tag:blogger.com,1999:blog-42359151411304673582024-03-05T23:19:00.559-08:00From MotherhoodA blog from the trenches of motherhood. I write about raising three littles, autism and military family life. Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-4235915141130467358.post-61557124450683099672019-08-18T06:59:00.004-07:002022-04-14T17:45:20.379-07:00I want to tell you a story...<div class="separator" style="clear: both; text-align: center;">
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<span face="system-ui, -apple-system, system-ui, ".SFNSText-Regular", sans-serif" style="background-color: white; font-size: 14px;">I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad almost all the time. He did not sleep…ever. He gagged on even pureed baby foods. He could not hold his own bottle. He could not pick up food from his tray even as he got older. He could not crawl at nearly eleven months old. Transition from one room to </span><span class="text_exposed_show" face="system-ui, -apple-system, system-ui, ".SFNSText-Regular", sans-serif" style="background-color: white; display: inline; font-size: 14px;">the next or trying to remove a toy from his hand to bathe him would cause severe meltdowns.<br /><br />I was perplexed. I had just done this and it was not this way. My husband was on a six month deployment. I could describe the hardships and the differences, but he was not there to see how hard this baby was! I initially thought he was in physical pain or that some physical ailment was making him so miserable all the time. I took him to allergists. I took him to dentists. He had cut four teeth by only 4 months old…was that the problem? I asked the pediatrician to watch videos. I kept telling all of them something was different. I was told by all of the professionals that some babies are just harder.<br /><br />Fast forward to about 14 months old. He still did not have any words. He did not respond to his name most of the time. He walked in circles a lot and got awfully mad when you stopped his process. He could not go into stores without screaming and bashing his head on the floor or cart.<br /><br />A doctor finally referred us to Early Intervention. We were told he was behind in speech and fine motor and that he has a lot of sensory issues. One therapist called it SPD (Sensory Processing Disorder), but no one had used the “A” word. In fact, when I questioned professionals about autism I was always told that he made eye contact and therefore was not autistic.<br /><br />So I latched on to the only terminology I had been given and joined every SPD group there was. Many of these overlapped with autism groups. And some parents pointed out that most of the time SPD is just the precursor to an autism diagnosis. I met a friend in one of these groups and our sons were about the same age. With some of the same struggles.<br /><br />We had read about the Gluten Free Casein Free diet that was supposed to work miracles. She tried it and kept it going for awhile. I tried it for a few months but saw a miserable kid who seemed even grumpier and was starving all the time. I saw no improvements. She tried to talk me into essential oils. Initially just offered them as a way to help him sleep. The smells made him gag, so I knew that wouldn’t work. Eventually she was telling me I should be rubbing it on his throat before speech therapy or even have him ingest some of it. That did not seem like a good idea to me, but to each their own.<br /><br />Our kids both got an autism diagnosis. My son was diagnosed as severely autistic. Her son was diagnosed with PDD NOS.<br /><br />Many in the internet groups I was in were very early on in their journeys. It seemed like everyone was throwing treatments at the wall just to see what stuck. I remember at one point being told that parents might as well try whatever as far as biomedical stuff went…it couldn’t hurt. Many in the groups focused on gut health and heavy metals and a number of other potential causes. There were detox options and probiotics and chelation therapy and hyperbaric chambers. For the most part I just absorbed it all and some of it I read in disbelief. In the meantime, we went to all of the doctor recommended therapies and had him in special needs preschool.<br /><br />As my friend’s son aged she attributed his development to many of the treatments she had tried on him. My son was progressing too but not at the same rate. Looking back, our kiddos were on very different ends of the spectrum and a comparison of progress was ridiculous.<br /><br />But I decided to finally listen to her on probiotics. She gave me the number of the guy she used to get the extra strength probiotics that were helping her son.<br /><br />I called the number and a guy with an accent answered. He explained that he makes all of his probiotics himself and they are 10,000 times stronger than what you can get in the store and doctors and scientists will all be coming to him in time.<br /><br />I abruptly hung up on him. What was I doing? What harm could it do? Some dude putting a bunch of shit in a bottle in his basement and I’m going to force it down my kid? Yeah, that could do some harm.<br /><br />No. No. No. It was a pivotal moment for me. For how I viewed autism. For how I viewed my son. It was a moment in which I acknowledged my own desperation and realized that my attitude had to change.<br /><br />I was told by my “friend” that I was failing my child by not trying everything in my power to recover him. I was told her son was progressing and mine was not because of the choices I was making. I was promptly unfriended when I asked for peer reviewed research for a few of the claims she was making about cause.<br /><br />And I stopped looking for ways to recover him or heal him or fix him. My goal was never for him to be normal. But I hated seeing him struggle. And I think for many parents of young children on the spectrum the desperation and exhaustion pale in comparison to the pain of watching your baby go through something you cannot fix.<br /><br />We started seeing changes in our son when we started listening to him and reading him. Even before he had words he would tell us with his behaviors when things were too much. When we really observed him and learned his triggers, his aversions and his reinforcers, we no longer had a child who was miserable all the time. We have some hard days, but we also have some awesome days.<br /><br />Looking back at pictures and videos of that time I am transported back to a time of desperation. And to the young families currently living it, I cannot promise you it will get better. Everybody’s journey is so different. But I can tell you it will never get better if you are listening to mom groups on the internet more than you are listening to your own child.</span>Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-41503875324829333972019-06-07T18:47:00.000-07:002019-06-07T18:58:30.416-07:00When Military Life Doesn’t Work For Your Child With Special Needs<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="text-align: justify;">
After seven moves in ten years, here we are.<span style="mso-spacerun: yes;"> </span>Moving into a neighborhood that we have
carefully sought out.<span style="mso-spacerun: yes;"> </span>Moving to a city
in which we are near family.<span style="mso-spacerun: yes;"> </span>Moving to a
school district from which our kids will graduate.<span style="mso-spacerun: yes;"> </span>And, finally, moving to a state with adult
services that can support our special needs child when we are gone.<span style="mso-spacerun: yes;"> </span>Our last PCS.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbboxcTibp7k8PVE9UKgX8tL6SRr3GL10zwv_qr1-ltB2xT6NacCn41eIBc2Gx1JLsiIDAGQOhyRKK0fAOnas2U9oNQ38pBbWbC_WriMdHTzgbigLUqBmbbKYeM5IxAdOhvwyvkw2g03w/s1600/13775597_659839564170112_4429810333109734564_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="768" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbboxcTibp7k8PVE9UKgX8tL6SRr3GL10zwv_qr1-ltB2xT6NacCn41eIBc2Gx1JLsiIDAGQOhyRKK0fAOnas2U9oNQ38pBbWbC_WriMdHTzgbigLUqBmbbKYeM5IxAdOhvwyvkw2g03w/s400/13775597_659839564170112_4429810333109734564_n.jpg" width="400" /></a>I have heard a great deal being said about special needs
families in the military.<span style="mso-spacerun: yes;"> </span>I have heard
we use EFMP (the Exceptional Family Member Program) to cherry pick assignments.<span style="mso-spacerun: yes;"> </span>I have heard we try to bypass EFMP to
continue getting needed assignments.<span style="mso-spacerun: yes;"> </span>I
have heard there are a higher percentage of kids with special needs in the
military population, with little explanation or research as to why that is the
case.<span style="mso-spacerun: yes;"> </span>I have heard my child is a burden
on a system lacking medical expertise and funding.<span style="mso-spacerun: yes;"> </span>I have heard our service members stay in just
for the health insurance our special needs children desperately need.<span style="mso-spacerun: yes;"> </span>I have heard our service members get out and
use their family as an excuse as to why they couldn’t keep going.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I can’t speak to all of that and I certainly can’t speak for
all special needs military families.<span style="mso-spacerun: yes;"> </span>I
can speak for our family and for myself.<span style="mso-spacerun: yes;">
</span>I can say this life has been unnecessarily hard on my special needs
child.<span style="mso-spacerun: yes;"> </span>Our son is eight and we are going
on our fifth school district; our fifth determination of eligibility for
special education services and our ninth IEP.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Over the years we have not used EFMP to get ‘good’
assignments.<span style="mso-spacerun: yes;"> </span>We have done everything in
our power to keep checking boxes so my husband’s career could progress.<span style="mso-spacerun: yes;"> </span>For many of us that means researching areas
and finding providers that will work that the EFMP office may not be aware
of.<span style="mso-spacerun: yes;"> </span>It means sucking it up for a year in
a school district that cannot or will not meet your child’s needs or follow
federal law.<span style="mso-spacerun: yes;"> </span>It may mean living apart
for a year, or two, or three so your spouse’s career can keep progressing while
your child can keep some semblance of stability and proper care.<span style="mso-spacerun: yes;"> </span>It can mean homeschooling when the Air
Force’s War College is located in a state ranked the worst in the country for
education, and from personal experience the worst in the country for special
education.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I think this is typically the point at which a multitude of
keyboard warriors say, “Military life clearly doesn’t work for your family’ or
“You signed up for this and knew what you were getting in to.”<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Did my spouse sign up for the military?<span style="mso-spacerun: yes;"> </span>Yes.<span style="mso-spacerun: yes;">
</span>Did I marry someone I knew was a career military man?<span style="mso-spacerun: yes;"> </span>Yes.<span style="mso-spacerun: yes;"> </span>But
we did not sign up for this.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
We did not sign up for a disabled child that would need to
stay in one state long enough to get on a Medicaid waitlist.<span style="mso-spacerun: yes;"> </span>We did not sign up for a child whose
educational needs are so significant that some public schools cannot safely
accommodate him.<span style="mso-spacerun: yes;"> </span>We did not sign up for
regression and mania and mental breakdowns with every move.<span style="mso-spacerun: yes;"> </span>And my husband, who had already been in the
military 16 years when our son was diagnosed severely autistic at three years
old, certainly did not sign up for a life in which moves and deployments could
set back years of progress for our son.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
While we didn’t sign up for a child with special needs, we
wouldn’t change it and he blesses us every day.<span style="mso-spacerun: yes;">
</span>Naysayers would be right about one thing, though.<span style="mso-spacerun: yes;"> </span>Military life (as it currently operates) does
not always work for a family like mine.<span style="mso-spacerun: yes;">
</span>We have made it work; sometimes to the detriment of our child, when
the therapy and psychiatric waitlists are longer than our eleven month
assignment.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
And for families like ours the choice to stay or go is not
always so black and white.<span style="mso-spacerun: yes;"> </span>Some of our
service members retire well before their careers would be over to give their
special needs child a forever home and some certainty.<span style="mso-spacerun: yes;"> </span>Some separate for the stability and to be
closer to family for help and hope to God they can afford healthcare for their
child with preexisting conditions in the civilian world. Some choose to stop
checking the boxes and request stabilization, often knowing they are kissing
their careers goodbye.<span style="mso-spacerun: yes;"> </span>And some keep
going, picking up the broken pieces with every move or working ten times harder
so their child will thrive.<span style="mso-spacerun: yes;"> </span>Military
parents of special needs children do not always feel like they can continue
serving their country and their children’s needs simultaneously.<span style="mso-spacerun: yes;"> </span>Every new assignment and every additional
year can feel like a choice against your child.<span style="mso-spacerun: yes;">
</span>It can feel like another year or two that they are set back on waitlists
for needed services.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Had my spouse kept climbing the ladder, we looked into the
future and saw not one or two more moves, but at least three.<span style="mso-spacerun: yes;"> </span>And probably another remote and a possible two
years of living apart.<span style="mso-spacerun: yes;"> </span>And at least
another four years before our son could get on a Medicaid waitlist (lists that
are often 5-10 years long).<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
I don’t write this for pity or justification, but only to
point out a few growing trends.<span style="mso-spacerun: yes;"> </span>The
military as it currently operates cannot expect the retention for which it
aims.<span style="mso-spacerun: yes;"> </span>They cannot retain service members
if they cannot retain families.<span style="mso-spacerun: yes;"> </span>As
leadership has families that are younger and younger and as more military
children present with special medical and educational needs it may be time to
change the model.<span style="mso-spacerun: yes;"> </span>Families only have so
many moves in them before they say,<span style="mso-spacerun: yes;"> </span>“Enough”.<span style="mso-spacerun: yes;"> </span>Between school years, staff jobs, command, and
back to school, and staff jobs and command (all one to two year assignments)
families, even with typically developing children, face issues with continuity
of education and stability.<o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
We are done picking up the broken pieces of an incredibly
resilient autistic child who has been shattered time and time again by the
anxiety and uncertainty of this life.<span style="mso-spacerun: yes;"> </span>This
is our last military move. <o:p></o:p></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<!--EndFragment--><br />
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-84033967424291080322018-12-19T11:01:00.000-08:002018-12-19T14:04:50.120-08:00Reflecting on Aggression; Embracing Hope<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWE6GVqYrihzErEd9amahPUl3UbS172vVPO8fRY7cYH1umTX4yGTn1PM4ZwmLwblS1Szrjn2YOouOadepH_P2Lt3bTNNS3ltVVz8RhPfcIhJZLMO8w-4sGfRNImEJ4lmnY27K7jWzDyjk/s1600/FullSizeRender.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWE6GVqYrihzErEd9amahPUl3UbS172vVPO8fRY7cYH1umTX4yGTn1PM4ZwmLwblS1Szrjn2YOouOadepH_P2Lt3bTNNS3ltVVz8RhPfcIhJZLMO8w-4sGfRNImEJ4lmnY27K7jWzDyjk/s320/FullSizeRender.jpeg" width="320" /></a></div>
<span style="background-color: white; font-family: inherit;">It's been awhile since I have written anything of substance. The truth is things are going pretty well in our little autism world and when things are going well I'm usually pretty quiet. I have given some thought to this over the last few days. Why is this? Initially, I thought maybe I just don't want to jinx it. But I don't think that's all of it.</span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span>
<span style="background-color: white;">The truth is when I share progress or happy posts I can almost feel half of you stop reading and closing your laptops. I can almost feel the mama with the little one on the other side of the country tearing up that her son isn't there yet. I can almost feel the resentment of the mom with the adult nonverbal, aggressive daughter because her daughter may never get there. I can feel the anger of the dad who would love to applaud my son's progress but is so frustrated after years of trying to access services that he can't be happy for us.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span>
<span style="background-color: white;">And all of those feelings are legitimate. I have been on the other end of some of them and have felt the exact same way. It's hard to rejoice in the autistic child singing the anthem on national television when we are experiencing bathroom accidents every day thanks to that same autism. It's hard to celebrate another beautiful savant autistic mind reported on the news when my autistic child is still not reading or writing.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span>
<span style="background-color: white;">So I get it. I get that the little feel good stories and milestone shares are hard for some of us. And because of that I was hesitant to share something pretty spectacular that has happened in the last few weeks for us. </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><br /></span>
<span style="background-color: white;">I have been very vocal that aggression has often been the hardest part of our son's autism. For years it has been a physical and emotional battle for me personally, as I am often target number one. For our autistic son's siblings it has been the traumatic part of growing up in an autism household. And I never plan to sugarcoat that reality that many of us live. I did a quick search through our written journey because I want to emphasize what an impact aggression has had on us over the years. </span></span><br />
<span style="font-family: inherit;"><br /></span>
<span style="background-color: white; font-family: inherit;"><i>Please don't tell me his autism is a gift as I take his little sister to the hospital for a concussion resulting from an impulsive outburst that he could not control.</i></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><i><br /></i></span>
<span style="background-color: white; text-align: justify;"><i>"Ever since the last move our autistic child's behaviors have been pretty bad. There are a lot of mornings before school that he screams the entire time I am trying to get him ready. He will go after me. He will sometimes go after them. Going from that to walking through the school doors ten minutes later, that's probably pretty hard for his older brother..." my voice cracked.</i></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; text-align: justify;"><i><br /></i></span>
<span style="background-color: white;"><i>I could also tell you that upon arriving to occupational therapy today he threw himself down in the hallway and screamed that he hated me. I could tell you that he nearly kicked through a glass door and that his sister had to be taken by another therapist to safety while we blocked and managed his meltdown. I could tell you that right after that polite conversation at school he saw a teacher he didn't want to walk with and bolted away from me down the hall. I could tell you that while I gathered him up he screamed obscenities and tried to bash his head into the cement wall. I could tell you I had tears in my eyes as I left the school. I could tell you that while I'm thrilled we were invited to a party we most likely will not go because his behavior has been too impulsive for me to chance it.</i></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><i><br /></i></span>
<i><span style="background-color: white; color: #1c1e21;">And while we all know there are hard days and we all know what that means, I think we do ourselves and our community a disservice by pretending aggression is</span><span class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline;"> not something a lot of autism families deal with. Some daily. Some hourly. </span><span style="color: #1c1e21;">Not talking about it takes a toll too. Along with all the good, there are a lot of feelings and a lot of pain that go along with raising a child with autism. And those feelings are valid. Always.</span></i></span><br />
<span style="font-family: inherit;"><i style="color: #1c1e21;"><br /></i>
<span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span></span><br />
<span style="color: #1c1e21; font-family: inherit;">We have had ups and downs with aggression. The bad months were especially bad, with locked doors and tears and bruises and blood. We have medicated. We have fought hard for access to intensive therapies. We have gone weeks without aggression only to regress and be near inpatient admission the following week. We have seen gradual progress over time with different therapy methods and medication. But most of it has been reinforcement and consequence driven. When aggression would ramp up we would ramp up our behavior plan at school and at home. Methodically we would reduce the aggression with consistency in reward and consequence and we would eventually get back to him being more in control and less likely to lash out.</span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">This has been the pattern since he was four years old. But a few weeks ago, for the first time, he started a new pattern all on his own. He would feel himself getting worked up (usually when compulsion or rigidity would get the best of him) and I could see it coming. I anticipated the blow or the bite. I readied myself to implement his behavior plan for aggression. But instead of lashing out he grabbed onto me and said, "Just hug me. Please just hug me." </span></span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">As soon as the immediate shock wore off I did just that. I sat down with him and hugged him as he rocked in my arms. Later I pointed out the difference to him. "It was so nice that you asked for a hug instead of hurting me."</span></span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">And he very matter of factly said, "It doesn't feel good when I hurt you. I'm always sorry. This is better."</span></span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">Ever since that day, when he is in the midst of meltdowns (which are still plentiful this time of year) he has burrowed his head into me and asked for a hug. We stay that way until he calms down and until we can talk about a plan to make him feel better.</span></span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">I don't write this to make anyone sad or mad that they are not there. And I certainly don't pretend to have it all figured out. Nor am I naive enough to believe our ebb and flow with aggression won't have many more chapters as he gets older.</span></span><br />
<span style="font-family: inherit;"><span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span>
<span style="color: #1c1e21; font-family: , , , , sans-serif;">But if your family is in a dark place with aggression I write only to say we have been there too and to give you hope. Continue on with strength and empathy. As much as you as a parent are struggling to keep everyone safe and hold it all together, your child is struggling that much more to find a constructive way to deal with everything going on inside of them. And when they find a better way to cope, you'll be there, scars and all, to embrace them.</span></span><br />
<div>
<span style="color: #1c1e21; font-family: , , , , sans-serif;"><br /></span></div>
Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-18532050551083744672018-08-26T11:59:00.000-07:002018-08-26T18:20:38.678-07:00Back to School Sales and Must Haves for Your Sensory Kid<div style="text-align: justify;">
<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigBByrPg497aN5UoSCXPTGje8OZ1W7ns6OhGn8enR8EhhOWOFjhxWaCfpSsqjAnr1v1iZ7IPhIIVPi25RESvpUEOtCTgrEzcM9E9SD7M3qNVAEPeHr1c9bt4KPk6LkYiW90EfvJsXLPtg/s1600/orange_back_pack.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="404" data-original-width="426" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigBByrPg497aN5UoSCXPTGje8OZ1W7ns6OhGn8enR8EhhOWOFjhxWaCfpSsqjAnr1v1iZ7IPhIIVPi25RESvpUEOtCTgrEzcM9E9SD7M3qNVAEPeHr1c9bt4KPk6LkYiW90EfvJsXLPtg/s200/orange_back_pack.jpg" width="200" /></a>The leaves are turning. There is a chill in the air. The clothes are all picked out and their backpacks are crammed with pencils and fresh white paper. The excitement surrounding the new school year is palpable. </div>
<div style="text-align: justify;">
<br />
But for some of our sensory and spectrum kids it is a very anxious time. They don't know what to expect. They don't know what will be different this year and what will be the same. Your son may be thinking about that awful sound made by the fluorescent lights in Room 32. Your daughter may be worrying about how she got in trouble last year for needing to tap her fingers to think. Your child may be thinking about how embarrassing it was to be moved to the front of the class because he kept leaning in his chair. Your little girl could be dreading how hard mornings will be following her many restless nights.</div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
For the families going into this year knowing their children may need a little help, I've put together a list of back to school sensory deals and products. Some of these we have used personally and some have been recommended by other families seeing their benefits. Before investing in anything you plan to use for your child for school use ensure it is allowed or can be added to their IEP or 504 as a necessary accommodation.</div>
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<h3 style="text-align: justify;">
Chewigem USA</h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijpr4AQlWqz37aU6A8cEANoGzey14REM-Hz8474FGiY_5hubrnanHt9TNbbDAB0L92sjsLx1N9XddJrELirELufftENwGdVFV9Q-ChofY3aELayheTmWoIIvgQXLon9yl4SfshIEQr58w/s1600/chewigem.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" data-original-height="320" data-original-width="479" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijpr4AQlWqz37aU6A8cEANoGzey14REM-Hz8474FGiY_5hubrnanHt9TNbbDAB0L92sjsLx1N9XddJrELirELufftENwGdVFV9Q-ChofY3aELayheTmWoIIvgQXLon9yl4SfshIEQr58w/s320/chewigem.jpg" width="320" /></a></div>
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So many of our kids need oral stimulation, especially while trying to focus or when anxious and my son is no exception. We have had weeks in which we had to throw away his shirt at the end of every single day. When another child is upset he chews his shirt. When he is bored he chews his shirt. When he is worried he chews his shirt. Having some alternatives for him to chew has been so helpful! He still seems to prefer the shirt, but thankfully he will chew on a Chewigem option instead when it's offered. He likes the Hexichews, but there are also more discrete options that can be worn as necklaces. Chewigem USA has given us a special code for our followers to save 15% off their entire site if you want to check them out! Code expires August 31st.</div>
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<a href="https://www.chewigemusa.com/">https://www.chewigemusa.com/</a></div>
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Use Code: <span style="background-color: #f1f0f0; color: #444950; font-family: , , , ".sfnstext-regular" , sans-serif; white-space: pre-wrap;">B2S 15</span></div>
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Heartek Ear Protection</h3>
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I can honestly say we would not have made it through last year without our son's earmuffs for noise. He wears them on the bus. He wears them at lunch and to assemblies. He also has it written into his IEP that they will be available to him and he can use them any time he asks for them. Often, just knowing that he has them in his backpack lowers his anxiety significantly. You can get the ones we use on Amazon or the Heartek site has quite a few discounted styles right now.</div>
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<a href="http://www.heartek-usa.com/">www.heartek-usa.com</a></div>
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HICKIES No-Tie Shoe Laces</h3>
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Both my ASD son and my typical son have a hard time with laces. My oldest didn't want to wear velcro this year and my son on the spectrum no longer fits in most of the shoes with velcro. Thankfully there are a ton of options out there now for adaptive laces! HICKIES is having a back to school sale right now and you can get kids no-tie laces for $9.99.</div>
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<a href="http://www.hickies.com/">www.hickies.com</a></div>
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Senseez Vibrating Cushions</h3>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPWvE-y7c7CoQZ9edZyKVr3oIAymy_M_Is1P330e_23amR-53gUs7UMKkjoG-TYXUnRpTt6cKDj9kOGLNKOWUgwutnc76Q1SY8ovvRCNsP-Vh-hcYWViNQge_vL8fADk_MIWhncr1icxE/s1600/girl+sitting+on+Senseez+WITH+VIBES++WM.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" data-original-height="972" data-original-width="628" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPWvE-y7c7CoQZ9edZyKVr3oIAymy_M_Is1P330e_23amR-53gUs7UMKkjoG-TYXUnRpTt6cKDj9kOGLNKOWUgwutnc76Q1SY8ovvRCNsP-Vh-hcYWViNQge_vL8fADk_MIWhncr1icxE/s320/girl+sitting+on+Senseez+WITH+VIBES++WM.jpg" width="204" /></a></div>
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Our oldest isn't on the spectrum but he is definitely a sensory kid. He often talks about how he needs to move or pace to think. He taps his fingers on the desk, wiggles in his chair and walks back and forth when he is deep in thought about something. This year we are trying out a Senseez vibrating seat cushion for him. He just started using it at home and it helps him a great deal with focus. He even said that it satisfies that part of him that has to move. We will just be using it at home for now, but I can definitely see how it would benefit a child in a school environment for focus or calming. If you wanted to try one out they are having a back to school sale right now and you can get 20% off your order! Don't forget to use the code.</div>
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<a href="http://senseez.com/">Senseez.com</a></div>
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Bouncy Bands</h3>
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In the same realm as the vibrating cushions are Bouncy Bands; allowing little feet to move while the rest of the little body stays still. Kids can get their wiggles out without distracting other students around them. We haven't yet used these personally, but I know many teachers who love them for their classes! Bouncy Bands is giving our readers 15% off if you buy within the next two weeks. Don't forget to use the code! </div>
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<a href="http://bouncybands.com/">Bouncy Bands</a><br />
CODE: B2SCHOOL</div>
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Therapro Pencil Grips</h3>
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One of our son's biggest academic struggles is fine motor and grip. It unfortunately has made it hard for him to stay anywhere close to his grade level with his writing. Thankfully, we have seen significant improvement over the last year in his writing through occupational therapy and accommodations. One of those helpful accommodations has been finding him the right pencil grip. We love these Zaner Bloser grips from Therapro, but it's all about finding the right grip for your child and they have a big selection. </div>
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You can get free shipping right now for orders over $35.</div>
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<a href="http://www.therapro.com/Browse-Category/Pencil-Grips/">Pencil Grips at Therapro</a></div>
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Wiggle Disk or Wiggle Seat</h3>
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There are a number of variations of the wiggle seat. This is an inflatable wedge or circle that goes on chairs and offers feedback and input for kids who have a hard time sitting still. When our son was younger he used one of the smaller ones and it definitely kept him seated for longer periods of time as he was still able to move and get the input he needed. AKC Kinetics has one on Amazon right now for $12.99 and you can use a $2.00 off coupon too!</div>
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<span style="background-color: white; color: #111111; font-family: "amazon ember" , "arial" , sans-serif;"><a href="http://a.co/d/9XO4NQW">Stability Seat on Amazon</a></span></div>
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Handheld Fidgets</h3>
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The selection of fidget possibilities is endless and now that the fad is dying away a bit you can get them fairly cheap! My oldest loves the spinners and the cubes. Fidgets give busy hands something to do while kids are thinking or listening. You can get fidget anywhere and everywhere; just make sure they are allowed in the classroom if they are needed. Oriental trading has a sale right now on a six pack of the fidget cubes. Just in case one or four get misplaced...</div>
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<a href="http://www.orientaltrading.com/fidget-busy-blocks-a2-13784734.fltr?sku=13784734&BP=PS544&ms=search&source=google&cm_mmc=GooglePLA-_-736570281-_-44071635732-_-13784734&cm_mmca1=OTC%2BPLAs&cm_mmca2=GooglePLAs&cm_mmca3=PS544&cm_mmca4=FS39&cm_mmca5=Shopping&cm_mmca6=PLAs&cm_mmc10=Shopping&cm_mmca11=13784734&cm_mmca12=Fidget-Busy-Blocks---6ct&gclid=CjwKCAjw_IPcBRAjEiwAl44QkU-72JEjo-OMhmyR6M6lvoMQt0LnDIvEmYa5_ziMOZxZJNxRrpQZeBoCNfYQAvD_BwE">Fidget Cubes at Oriental Trading</a></div>
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Weighted Blankets</h3>
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I'll close with a product that at one time was a lifesaver for us because it saved the entire household countless hours of SLEEP. Coming down from an overstimulating day is hard for our sensory kids even when they are tired or overtired. A weighted blanket can help not only bring them down, but it can keep them down and cut down on night wakings. It gives our son a feeling of security and offers the pressure and input he needs for his body to stay at rest. Make sure you research the weight appropriate for your child's weight and size. There are a couple sale options for blankets right now.<br />
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Check out Sensory Goods. They have a special going and you can get your weighted blanket 20% off!</div>
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<a href="https://www.sensorygoods.com/category_s/1515.htm">Weighted Blankets at Sensory Goods</a><br />
CODE: FB 20</div>
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Another great option for a more personalized blanket is <a href="https://www.facebook.com/JudysLilQuiltFix-133767393370321/">JudysLilQuiltFix</a> on Facebook. She made our son's blanket years ago and it has held up great through countless washes, trips and moves. Send her a message and mention the Back to School sale and get $5 off your blanket!<br />
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I hope you and your child find some of these products helpful and useful. Keep in mind everybody is different; so what works for one child may not work for the next. It's mostly about trial and error and finding the right fit for your child's sensory needs.</div>
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Here's to a great school year!</div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-45617379658399129882018-08-05T12:05:00.003-07:002018-08-05T12:05:52.803-07:00Life being hard doesn't give you a pass to kill your autistic child<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqaC4xViRkqGsuVHYNURdGU9i7WYDnRPG84ilUUj5pWP4f0gKzDo-Nmue84bOCDKobtfYQQZkvtK-FD3YCVCk5MzLEn6Ye7ZG8ltkUJeg4fdqSd39LTERH_DeBts12aQGJ-gWUcMaMM54/s1600/graveyard-1417871_1920.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqaC4xViRkqGsuVHYNURdGU9i7WYDnRPG84ilUUj5pWP4f0gKzDo-Nmue84bOCDKobtfYQQZkvtK-FD3YCVCk5MzLEn6Ye7ZG8ltkUJeg4fdqSd39LTERH_DeBts12aQGJ-gWUcMaMM54/s320/graveyard-1417871_1920.jpg" width="320" /></a><br />
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Did that headline make you sick? Do you know what will churn your stomach even more? Google "Number of autistic children killed by their parents". Look at the faces, the names and the numbers just in the last year alone. It's sickening. And equally sickening is the aftermath; the excuses for the parent and the sympathy. Not sympathy for the murdered child, mind you, but sympathy for the overstressed parent who murdered the child. And, sadly, when a disabled child is killed even the ensuing trial becomes more about the parent's struggle raising an autistic child rather than about justice for the victim. </div>
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Every time one of these tragedies is reported I try to understand the logic behind all of the "This is awful, but it is really hard" comments. And I wonder if maybe someone who has felt desperate and out of control and helpless as a parent to an autistic child is sympathizing with the feelings that could lead up to such an evil act, but not excusing the act itself. I get it, but that's such a dangerous path and slippery slope. When we do that we lose sight of the victim's worth and the victim's struggles. When we relate to a murderer's possible feelings because we are in a similar life situation and start to rationalize we are indeed defending their actions, not just their feelings of desperation. </div>
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Even with our rhetoric in talking about day to day struggles raising a child with autism it's so important to be conscientious of how it is framed. Anyone who has followed this blog for any amount of time knows I do not shy away from talking about the hard stuff. But should the focus be how hard it is for me or how hard it is for him? When we only focus on how autism negatively affects us, the parents, we are perpetuating the stereotypes and stigma that autistic children are a burden. When autistic children are seen as a burden they are seen as disposable. </div>
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Imagine if a similar argument was made regarding a typical child who was killed by his parent. "I know it was wrong and I'm not making excuses, but that kid was really hard to raise and was always getting into trouble. He had a terrible attitude. Maybe the mom just snapped. Who are we to judge?"</div>
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That sounds ridiculous, right? Because it is. There is no amount of parental desperation that justifies murder. Ever.</div>
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The other aspect I see often brought up in light of these tragedies is the lack of support and the failures of a broken system. Those are valid concerns and ones that probably should be addressed when we see an epidemic of a certain community of children and disabled adults being perpetually targeted by their caregivers. Maybe some of these children would be saved with more resources in place. It's likely that with better support and access to care we would see a drop in such cases. That is a fight we can all keep fighting everyday, but when we make murderers our example for the community's need we are transferring the blame from them on to the system. </div>
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The system is often failing families and it can be very hard, but parents must do everything in our power to protect our children. They are worth it. Their lives are worth living. They deserve to live and those taken did not deserve to die. They deserve justice. And should be remembered and mourned; not just as murdered autistic children, but simply as murdered children. These parents are murderers, not victims. Their dead children are the victims. </div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-53234509886316141902018-07-09T23:18:00.000-07:002018-07-09T23:18:57.290-07:00Like Mine<div class="separator" style="clear: both; text-align: left;">
<span style="color: #454545; font-family: ".SFUIText"; font-size: 17pt;">We met at a park</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I wondered right away</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">But I knew for sure over time </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Your boy’s a lot like mine</span></div>
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<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I saw his explosive moments </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">And the look of defeat in your eyes</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I wanted to tell you </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Because I’m not sure you know</span></div>
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<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I saw his tears over the wrong color cup</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I saw the panic in your eyes </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I wanted to say I’ve been there </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">But I don’t know if you know</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">As kids around him play he lines up his toys</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">You play it off and laugh</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I want to ask the question</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">But I’m not sure you want to know</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Your boy talks in sentences</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Your boy does okay in school </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">So I’m not sure you see</span></div>
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<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I see how you look at mine</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Because your boy doesn’t flap and rock</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">He doesn’t chew holes in his shirts</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Your boy doesn’t say the same word over and over</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Or need headphones to get through the day</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">After seeing your reaction to my boy today</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">It became clear to me </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">You don’t want your boy to be</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">A lot like mine</span></div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-58661785939719621792018-04-04T17:03:00.002-07:002018-04-04T17:03:36.320-07:00I know you have heard of autism...<div class="separator" style="clear: both; text-align: center;">
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I know you have heard of autism. I know you may think you know what it means. I know you probably know of somebody who is on the spectrum or has a child on the spectrum. I know you have probably seen feature stories or read articles about amazing autistic minds and talents. But I wonder if you know much beyond what you have seen on a TV show or what you’ve heard in passing.</div>
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Do you know autism can be nonverbal, but it can also be very verbal? Do you know autism can be anti-social, but it can also be very social? Do you know autism can be debilitating, but it can also be enabling? Do you know autism can be sensory defensive, but it can also be sensory seeking? Do you know autism can mean aversive to touch, but it can also mean needing touch and pressure?</div>
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Do you know autism can mean brilliant, but it can also mean challenged? Do you know autism can mean gifted, but it can also mean in need of special education? Do you know autism can look like rocking and jumping and flapping, but it can also look calm, collected and introverted?</div>
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Do you know autism can occur by itself, but it can also be accompanied by other disorders that can make it that much harder?</div>
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Do you know someone with autism may be able to read and write, but may never be able to talk? Do you know someone with autism may be able to talk, but may never be able to read and write?</div>
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Do you know autism can make it next to impossible to sleep? Do you know autism can result in aggression when over-stimulated or dysregulated? Do you know autism can mean overly friendly and unable to read social cues?</div>
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Do you know autism can mean speaking too loudly for the venue, but can also mean speaking too quietly to be understood?</div>
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Do you know autism can bring on extreme interests, but can also mean extreme disinterest in surroundings, people or toys?</div>
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Autism can mean he can’t look you in the eye, but it can also mean talking to you just a couple inches from your face or reaching out to hold a stranger’s hand.</div>
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Autism can mean bolting and wandering and flight risks, but it can also mean debilitating anxiety that makes it impossible to leave the house.</div>
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Autism can mean one day he needs snuggles at every opportunity, but the next day he may scream he hates everyone over and over again.</div>
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Autism can mean not being able to dress oneself, but can also mean taking off clothes when angry or uncomfortable.</div>
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Autism can mean slower processing time, but can also mean unbelievable memory.</div>
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Autism can mean excitement for life and unmatched joy, but it can also mean lifelong struggles and sometimes needing lifelong care.</div>
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Did you know autism is so much more than we know or understand and the spectrum varies widely from person to person? Did you know the challenges and joys of living with autism vary widely even from one day to the next?</div>
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Maybe you didn’t know. But now you know. And the next time you might be tempted to make a judgmental look or comment you no longer have the excuse that you didn’t know.</div>
Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-76345473373993959042018-03-06T12:50:00.003-08:002018-03-06T13:28:34.153-08:00Too Real and Too Tired For Nice<div class="separator" style="clear: both; text-align: center;">
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This morning while trying to drop off my child at school I stood in the middle of an office and watched him flail his body, try to throw things off desks and lunge at myself and his teachers. While office staff looked on gaping and his teacher tried to separate his body from mine I heard him screaming he was going to kill us all. Damn. Did reading that hit a nerve? I'm sure it did for all of them too. Every time he screams terrible things that he has far too little cognitive ability to comprehend, I wonder if today will be the day that something he screams will get him arrested or shot. That's our reality. That's our autism. I am scared to take him to stores. The last time I had to carry him kicking and screaming out of a store the police were called. They thought I was kidnapping him.<br />
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And the harder part is that when people think of autism they usually think of nonverbal or Asperger's. They don't think of what a verbal meltdown brought on by anxiety or overstimulation could look or sound like. Every time I am handling him and trying to keep his body safe in a parking lot I'm worried a video of it will end up on Youtube with a caption "Kids these days are assholes..."</div>
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And because this is our reality it gets really hard to care about anything else beyond the basics when everyday feels like a battle. I am worried how this will go down when he weighs more than I do. I worry how it will be perceived when developmentally he is eight but his body is sixteen. Many days every ounce of my being is poured into trying to ensure he has the highest quality of life, trying to ensure he meets his highest potential and trying to keep him safe.</div>
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So, if he loses therapy because of an insurance issue or loses mental healthcare due to a coverage issue, I'm going to be a bitch to every person I talk to who failed him in that process. If he spirals out of control and has to be institutionalized because he was not given access to what he desperately needed, I will knock down every door and blaze every trail to make sure he and others have access to it in the future. </div>
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If there is a school safety issue and my kid's safety is at risk, I don't care how much good your school has done for him educationally. Autistic children die in this country every single day due to seemingly insignificant oversights. Safety oversights KILL OUR CHILDREN. It is a BIG deal. And if I don't feel like you understand it is a BIG deal I won't pull any punches when we discuss it. And if you think I'm a mean, ungrateful parent so be it.</div>
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After nearly two years of a doctor telling me he'll grow out of it or it's just a phase I learned the hard way that professionals do not always know better than parents. Now, if there are doctors or therapists who will not listen to our concerns I make my point louder and clearer and if they continue to ignore me, we move on to someone who will listen.</div>
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If you are a friend and asked me how my day was going these past couple weeks, I couldn't even pretend it's going okay. I couldn't even pretend I'm not terrified and exhausted and I appreciate the friends who are good with a raw report of our reality.</div>
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Overall, I try to be a nice person, but there are times when I am too fed up, too tired and too worried for nice. </div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-67973323562953103912017-11-13T17:35:00.000-08:002017-11-13T17:35:29.366-08:00Someday, I Won't Have to Write About Autism Anymore<div class="separator" style="clear: both; text-align: center;">
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Today, sweet boy, was a good day. There were very few meltdowns. There were a lot of snuggles. You used your words to communicate your needs and frustrations. You played with your sister nicely and compromised when needed. And we had a great outing that left you smiling from ear to ear.</div>
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You had a moment of excitement at seeing an unexpected favorite thing while we were out and about. You flapped. You jumped up and down, yelled with delight and ran towards it. You only saw the exhibit. Not the people around it. You didn't see the mother shield her daughter when she thought you got too close (you weren't too close). You didn't see her smile turn into a disapproving frown when your voice was a bit too loud for indoors. You didn't see her eyebrows furrow with a perplexed look when you kept saying the same phrase over and over. You didn't notice how quickly they moved on to the next exhibit or the ones they skipped to get away from us more quickly.</div>
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I saw it and I'll admit it took a little bit of joy away from a moment that should have been nothing but joyful. It didn't bother me in that I felt judged as a parent. I got past that feeling long ago. It didn't bother me that her kids were quiet and well-behaved and she clearly thought you weren't. To each their own.</div>
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But it bothered me that she didn't know. It bothered me that people expect you to wear an "I'm autistic" sign on your head for them to be kind to you in those situations. It bothered me that she appeared to be scared of you because your mannerisms are a bit different. It bothered me that I didn't even get a chance to tell her about you or explain you were just excited. It bothers me that as much as we advocate and explain that there is still a whole world of people who don't know how autism can look. And maybe they don't want to or care to know. The optimistic part of me wants to believe that they would care about you and they would accept you, but they just don't know yet. There aren't always great moments to educate the masses while we are trying to get through our day. But we will try and we will keep explaining, and educating and enlightening at every chance we get. And I'll keep writing about you and your beautiful mind until everyone knows.</div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-2453018047249464322017-10-30T22:37:00.000-07:002017-10-31T06:48:26.084-07:00Off Meds and Scared Shitless<div class="separator" style="clear: both; text-align: center;">
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It's been awhile since I've written. In fact, it's been so long that my last post adamantly defended our decision to medicate our son. Between then and now there have been some pretty major developments. We've moved across the country. We've started a new school. Our therapy schedule has been turned upside-down.<br />
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All of our kids have rolled with all of these changes beautifully. But for our son on the spectrum, I'm especially proud of how well he has done. We've had some hard days. He's been confused. He's been angered by some of the changes. He's been elated by some of the new experiences. He's been saddened for the friends, teachers and therapists he's left behind. <br />
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But, overall, he's done well. A new school schedule has meant he's getting up at 5:45 to catch the bus. It was such a hard adjustment. So hard that he was regularly falling asleep in school for large chunks of time. We asked his psychiatrist about lowering his meds. He was on board.<br />
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As we lowered them I saw some positive changes. We wondered if we are in a place now in which he would do better without meds. After all, he's had countless therapies and has progressed amazingly with coping and communicating. We have been down this road before but I seldom talk about it. Because the positive changes of reducing meds were followed by a terrifying fallout of psychosis, aggression and self injury.<br />
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And I was filled with guilt for taking him off or for putting him on them in the first place....I wasn't really sure. And then different meds were tried instead to help him cope. None helped. So he was put back on an antipsychotic and I cried.<br />
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I know what we say about medication and stigma. It's alive and well. But this grief was so much more than that. It was a grief that acknowledged that this is my child off meds and he cannot function, he's miserable in his own skin. And it's a heavy reality.<br />
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Fast forward to now. He's off of everything because after talking to a new doc I discovered last time around the fallout could have been withdrawal. It could have been the new sleep med. It could have been any number of variables. Of course, it could also have meant he really needs it still and that is yet to be seen.<br />
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So, there you have it. And I haven't said it out loud because I feel like it will be perceived as though I did the wrong thing putting him on it then. Or we did the wrong thing taking him off of it now. Or I will be eating these words in a month when we realize there is no other way right now. <br />
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But I have to talk about it because I want you to know there may be a season in your child's life in which medication is a godsend for their peace of mind and ability to function. There may be another season in which they thrive without it. This is not an "I've see the light and medication is evil" post. Not by a long shot. For a time it saved his life, it saved his family. It may very well be a necessity again. As he's gone off of it I've asked him everyday, "Do you feel happier? Do you feel more in control? Do you feel out of control? Do you feel too fast? Do you feel too slow?" And he can answer. And I know that's a luxury not every family has. They were the same questions I asked him when he went on meds or when we changed meds. I just want to know what's best. I want to read into his actions and listen to his words and just do what's best for him.<br />
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If you get nothing else out of this piece please know this: the decision to medicate is not taken lightly. Nor is the decision to stop a medication. We know the gravity of these decisions. They weigh on us every minute of everyday. Right now it's hard, but we're okay. And I think it's the right call. A month from now I could hate myself for making this decision. I wish to god we all had a crystal ball. But we don't. We love our babies and will move mountains to help them feel whole, regardless of which path gets them there.<br />
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-58119336184609736602017-06-06T09:06:00.000-07:002017-06-06T09:06:17.401-07:00Does He Look Like A Zombie?<div style="text-align: justify;">
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<span style="background-color: white; color: #212121; font-family: inherit;">Every time someone writes about some children needing medication for their mental health there are always at least a few comments, verbatim:</span></div>
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<span style="background-color: transparent; font-family: inherit;">"I don't want my kid to be a zombie." </span></div>
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<span style="font-family: inherit;">"I would never medicate my child!"</span></div>
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<span style="font-family: inherit;">"There are so many other options."</span></div>
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<span style="font-family: inherit;">"Parents who medicate their kids are lazy."</span></div>
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<span style="font-family: inherit;">So I have to ask....Does this look like a child who is drugged? Does this look like a kid without emotion whose life has lost excitement and joy? Does he look like he's zoned out or miserable? Does he look meek or as if all of his uniqueness has been stripped away?</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj54Lm8S9h4TYGx4Y2YvPloq1a4z-C3jh-BvzWPSwL8Ab3tciBDnUMzhrw__z2bUKLzQXzFv-3VkVzMg-LKGxKhB0hcXi-4ymbF0caKAAfkM0cXrE7lfi7NeU8vQiNI7P0OT9ylhjAozTY/s1600/170324-Promo+Farmer-086.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" data-original-height="1408" data-original-width="1600" height="280" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj54Lm8S9h4TYGx4Y2YvPloq1a4z-C3jh-BvzWPSwL8Ab3tciBDnUMzhrw__z2bUKLzQXzFv-3VkVzMg-LKGxKhB0hcXi-4ymbF0caKAAfkM0cXrE7lfi7NeU8vQiNI7P0OT9ylhjAozTY/s320/170324-Promo+Farmer-086.JPG" width="320" /></a><span style="font-family: inherit;"><div style="text-align: justify;">
<span style="font-family: inherit;">I didn't think so. I see a child who can go about his day without constant anxiety over what might come at him next. I see an individual who jumps and rocks and laughs. I see a boy who can now function, concentrate and attend long enough to learn and discover the world around him. I see a brother who can now enjoy playing with his siblings because his aggression and impulse control are so much better. I see someone who still experiences every emotion and still has some hard days, but can now get through those days in a more constructive way. </span></div>
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<span style="font-family: inherit;">I don't discount that some people have had bad experiences. I don't doubt some kids have been medicated when it isn't needed. I fully understand some individuals have been medicated against their wills and feel strongly due to that experience.</span></div>
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<span style="font-family: inherit;">But please don't apply one experience to every other situation. Every child is different and has different needs. We would never recommend just changing diet or hoping for the best for a physical illness; why is a mental illness any different?</span></div>
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<span style="font-family: inherit;">I don't see a zombie. I see a happy boy who I love and would do anything and everything to support.</span></div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-56648102698995054952017-05-05T11:29:00.000-07:002017-05-10T18:46:56.418-07:00My Kid's Disabled, I Can't Vote Red Anymore<div class="separator" style="clear: both; text-align: center;">
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I have always believed that one's political views are the result of a compilation of his or her experiences. I consider myself an independent because I simply can't get on board with all of the main pillars of either major party's platform. Although I have leaned Republican in past elections (on foreign policy, military budget, states' rights, and fiscal conservatism), I have realized over the past couple of years that I can no longer vote for the majority of Republicans. </div>
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Why not? It's simple. I have a disabled child. And Republicans are doing everything in their power to make his life harder. Before being immersed in the special needs world, I didn't know what I didn't know. I didn't know how much families with disabled children are affected by legislative decisions and how life altering it can be when services are taken away. Many of the state early intervention programs that got my autistic child to where he is today are now in jeopardy because Republican lawmakers cannot see the value in giving disabled infants and toddlers therapy now allowing them to reach a higher potential in the future. The outpatient therapy that has helped him so much is consistently harder for families to access. With the repeal of the ACA many families will lose their only chance at accessing life changing therapy for their autistic children.</div>
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The proposed cuts to Medicaid not only affect families who are in a specific income bracket; they affect future disability benefits that our children will need as they age out of the education system. These cuts also impact families who have other insurance but use Medicaid to fill gaps in coverage for their disabled and chronically ill children. How can these lawmakers look their constituents in the eyes when they are knowingly pulling the rug out from under their families? And many Republicans are fighting against my son's quality of life so openly and so blatantly that I can only conclude they simply do not care.</div>
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As much as I understand the argument for states' rights, after living in states that could care less about educating or providing services for their disabled populations, I can't argue that federal oversight, protections and enforcement of those protections are absolutely necessary. When you have entire states that care more about their high school football program than staffing their special education classrooms, one can't gloss over the disparity in special education from one state to the next. Having lived in multiple states and having dealt with multiple educations systems, I can tell you that any time we are heading to a red state I cringe and I worry about what will be available and if my son will have access to a free and appropriate education. </div>
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The new administration is touting school voucher programs as if they will be helpful to those in the disability community, but we have seen the results in states with robust voucher programs in use and they aren't good. Charter schools are performing just as bad as public schools throughout Michigan and now public schools are even more underfunded than before. Not to mention that a number of charter schools will not accept disabled children. And most voucher systems for disabled children require parents to sign away their education rights and have no input on their kids' education. What a joke. As a country we have worked for years towards more inclusion of our disabled students and now our Department of Education wants to send all of the disabled kids to special schools rather than supporting them in an environment with their typical peers. We are going backwards.</div>
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As a military spouse, I do not only worry about my disabled child's current access to education I worry about services after he ages out. We have to decide where to retire at some point and as much as I love the people and atmosphere of many of the states in which we have lived, I can't bring myself to commit to settling down somewhere that will offer him absolutely no support when we are gone. Some of the states we love the most have done away with all of their mental health support and some specifically have said their residency programs will no longer accept autistic individuals. I can't really wrap my brain around how archaic some states are when it comes to their disabled and mentally ill populations. But the one consistent thing I see over and over again with lack of services, lack of appropriate education and lack of healthcare is RED. Red state legislators are perpetually failing their constituents in these areas and they don't seem to care. </div>
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Yesterday, the House passed the AHCA, a bill that would allow states to opt out of any mandated coverage for those with pre-existing conditions (pre-existing conditions that include everything from autism to pregnancy). The bill also would greatly impact Medicaid funding for disabled individuals. Every medical, disability and autism organization has expressed opposition to the AHCA and what it would mean for our most vulnerable populations. And yet enough Republicans are okay with that that it passed the House and in doing so they made it perfectly clear to me that I can no longer vote Red in good conscience. And for those Republicans who voted against this heinous bill, good for you, but your party is still disappointing so many of us. </div>
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I have found that a number of friends in the disability community feel the same way. Regardless of where we stand on other issues, we can't get past the Republican party's attack on Medicaid and education. The AHCA now goes to the Senate and I hope against hope that I am pleasantly surprised and enough Republican Senators will stand up for my kid and vote NO. But, sadly, I have lost hope that the Right cares about my kid at all.<br />
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*****Added Edit*******<br />
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I shut down comments on this post for a bit because I don't have time to respond to every angry liberal in the world, but I would really much rather have a discussion. I have voted for Republicans, I have more often voted for Democrat or Independent candidates (even before having a disabled child). Over the last few years the GOP's attack on the disability community has felt very personal and solidified my choice not to vote for them at any level, regardless of my stances on issues other than healthcare and education. Perhaps, rather than jumping all over this post the left could see it as an opportunity to bring the insane number of people in the disability community still voting red into the fold? I am very socially liberal and very empathetic. But there are a number of people who may not be and they need to see that their vote does affect THEM even if they are only concerned with their own family's situation. There are also a number of people who would never know the ins and outs of Medicaid funding and health insurance nightmares unless they are impacted. Then there's a lightbulb, not just for their own family, but they realize many families are impacted by Medicaid cuts and an ACA repeal. People are not going to agree with every part of every party's platform, but there are a huge amount of voters in the the disability community that are still voting red and this post is written to identify with them. Perhaps from the title everyone is assuming I woke up one day with a disabled child and a sudden change of heart. Not the case for me, but with a different title and a different tone, it wouldn't have gotten the attention it needs. And I hope others in the disability community will realize that voting red is voting against their kid and/or against themselves. Even with the many many angry comments (that really aren't fazing me because most of them I didn't read and for the ones here on the blog they are based on a lot of incorrect assumptions) this post is still accomplishing everything I wanted it to accomplish as a number of people much more conservative than myself are messaging me "Wow, the GOP really doesn't support my kid's best interest so even if I am _____ (fill in the blank: Christian, Pro-life, Military), I can't vote red." So, you're welcome.</div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com19tag:blogger.com,1999:blog-4235915141130467358.post-18372171678583227692017-04-29T19:29:00.000-07:002017-04-30T05:06:33.364-07:00An Autism Mom's Review of Sensory Swim<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJsovcy1UTgCxbMclpXYa0TNdA9_MHZJJtMHZLgeZUBL28KAdrmYVsuDZmpNlBGjNWIaDT9vM3_sFLsvdGT680hpPxD7Rq4oLJ4G8bzktT4nENgQ5q_-0KJTXYKDeyUOmFqSgpIB3Ypek/s1600/DSC_0008.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJsovcy1UTgCxbMclpXYa0TNdA9_MHZJJtMHZLgeZUBL28KAdrmYVsuDZmpNlBGjNWIaDT9vM3_sFLsvdGT680hpPxD7Rq4oLJ4G8bzktT4nENgQ5q_-0KJTXYKDeyUOmFqSgpIB3Ypek/s320/DSC_0008.JPG" width="315" /></a><span style="text-align: justify;"></span></div>
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<span style="text-align: justify;"><span style="text-align: justify;">In February of last year we enrolled our son in the <a href="https://sensoryswim.com/" target="_blank">Sensory Swim</a> program. A few months after starting with them, I wrote an article about the progress I was seeing and their methodology with autistic students. We are finishing up with Sensory Swim due to a military move and I wanted to offer up a final review of our time with their program. </span>Drowning accidents kill way too many autistic adults and children and we, like many autism parents, worried for our son's safety. Along with autism, our son has a number of deficits that work against him in a traditional swim lesson setting. He has a speech delay, so he does not always understand and process verbal instruction. He has ADHD and needs constant engagement and reinforcement to stay on task. He has severe dyspraxia, which affects his core strength, fine motor and gross motor skill sets. He has sensory processing disorder, which makes him very sensitive to sounds and other stimuli, making a number of environments hard for him. He has severe anxiety and severe separation anxiety, making any new settings or working with new people difficult.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQWs8cvS1cHcGiB7sBYuaYyHJ-MdvyD6y7qQmfwsG65b6RiEokOi6uWGuv5BTwz5FElN6aYJ9scD9hftzFGhMpUczlPSPdvL6sb7abtfyU4pwZUtopDVmHRC1OspU7LcU9MqT-pR6D4ME/s1600/DSC_0505.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQWs8cvS1cHcGiB7sBYuaYyHJ-MdvyD6y7qQmfwsG65b6RiEokOi6uWGuv5BTwz5FElN6aYJ9scD9hftzFGhMpUczlPSPdvL6sb7abtfyU4pwZUtopDVmHRC1OspU7LcU9MqT-pR6D4ME/s320/DSC_0505.jpg" width="320" /></a><span style="text-align: justify;">Initially I was very concerned that our son would not go with Andrew and Mary into the pool unless I was right there. I also had a lot of anxiety myself that they would not be able to hang with him and that he might get aggressive or be too hyperactive during his lesson. I was concerned for his safety in the water without me right there. After just a few sessions most of those concerns were alleviated. He enjoyed the water so much that separating from me was not that big of deal for him. I also noticed that Mary and Andrew had a very good rapport with him and their other students. They could not only handle his hyperactivity, but they expected it. </span></div>
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<span style="text-align: justify;">We watched him over a few months get much more comfortable in the water. They only worked in the deep end so that it forced him to attempt to tread water. He learned how to hold his breath and "blow bubbles out" when he would go under water. He wouldn't tolerate goggles, but got more comfortable with water in and near his eyes. I thought, initially, well even if he doesn't learn to swim at least now he understands that he needs to try to get to the ledge or something to hold on to. I thought at least now he knows not to breathe in if his head is under water. And with how week his core is and how rough his motor planning is (at six he still cannot pedal a tricycle) I really did not expect much more.</span></div>
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Over time though, he started going a few inches further each time. At first they would propel him and wait for his natural instinct to take over. As he started getting a feel for it, over multiple sessions, they would back up further from the wall and encourage him to paddle heard enough to get to the wall. They worked with him on kicks and paddling his arms separately as he couldn't seem to do it at the same time. But eventually, he started kicking while he was paddling. Once he got a little stronger and a little more sure of himself they would have him jump to them in the water. They would back up a little more each time and he didn't seem to even realize that he was swimming. He built on this and before long was swimming the width of the pool without any assistance. It was really an amazing progression to watch.</div>
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After using Sensory Swim for about 15 months and observing them with my son and other children these are the things I like: They don't shy away from harder cases or kids that hate the water and they go at the child's own pace and validate the child's anxiety. They work with all age groups and meet the child where they are developmentally. They know how to work with nonverbal, hyperactive and aggressive children (many swim programs won't even consider teaching children with these issues, regardless of their disability). They use the deep end (where they can still touch but the children can't) for lessons and this seems to force the issue for kids who would otherwise be hesitant. Once the child is starting to get it they give the child space to be independent in the water. They will stay close by for safety purposes, but they will stay out of sight lines, thus encouraging the child to do it on their own. Mary and Andrew are teaching seminars, printing materials and books, and answering questions for anyone who cannot get lessons with them but wants to know their methods. They genuinely want to help our community and lessen the number of autistic children dying in drowning accidents every year.</div>
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<span style="text-align: justify;">I wish that Sensory Swim was available in more areas of our county as I truly believe they have the right attitude and methodology to help so many in the autism community learn to swim. Because they have so much experience with special ed students and travel weekly to help as many families as possible, their lessons are more expensive than traditional group swim lessons making their program less accessible for some. But for us, the proof is in the results and it was totally worth it. I cannot put a price on one less thing to worry about when it comes to my autistic son's safety.</span></div>
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**I have not received any compensation, products, or services in exchange for this review. I simply want other families to know what worked for us.</div>
Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com3tag:blogger.com,1999:blog-4235915141130467358.post-52456672206728231932017-04-12T06:27:00.000-07:002017-04-12T06:30:42.548-07:00What About Me?; The Story Behind Our Autism Sibling Book<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieUa6D8plPZPMh8Ic0sHgC2-_Lc-nrq_X78onAu1x2adVjmvnPfbFTHr3I_Bp7GGNPFVhHD0hFyfud2Mb6mJW73WyNawVPXf87sMvsFpr4xGsW8wHwqwkY9AhP32w2QOWw3tXMzO3p6V4/s1600/17761382_10154526139250765_226656553_o+%25281%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieUa6D8plPZPMh8Ic0sHgC2-_Lc-nrq_X78onAu1x2adVjmvnPfbFTHr3I_Bp7GGNPFVhHD0hFyfud2Mb6mJW73WyNawVPXf87sMvsFpr4xGsW8wHwqwkY9AhP32w2QOWw3tXMzO3p6V4/s320/17761382_10154526139250765_226656553_o+%25281%2529.jpg" width="320" /></a><br />
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A little over a year ago our eldest son started having a lot of behavior problems both at home and at school. He has always been our easy going kiddo and definitely the most mellow of our bunch, so imagine my surprise when I was called in for a meeting with the principal, the kindergarten teacher and a counselor to address out of control behaviors and outbursts that were occurring in the classroom. What?? We had been seeing some emotional moments at home, but most of them seemed reactionary to living with a brother on the spectrum who has a lot of behaviors himself.</div>
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As I talked through the meeting with the school (a meeting at which they recommended therapy for him) it dawned on me that I was so busy tending to our autistic child's needs and behaviors that I had lost sight of how hard living in our home must sometimes be for a child.</div>
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"Are there problems at home?" they asked. </div>
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Wow was that a loaded question. I explained, "Ever since the last move our autistic child's behaviors have been pretty bad. There are a lot of mornings before school that he screams the entire time I am trying to get him ready. He will go after me. He will sometimes go after them. Going from that to walking through the school doors ten minutes later, that's probably pretty hard..." my voice cracked.</div>
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His teacher spoke up, "He talks a lot about needing to be perfect and needing to do everything the right way. He seems to get down on himself a lot. His emotions lately have just been right at the surface and it takes very little to bring him to tears."</div>
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"He's definitely had to grow up fast and be the bigger person all of the time. But he's usually such a happy kid. I don't even know what to say. We'll talk to him."</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHfCKDKDfI4MtR8fjmTFc0EvVmgL-pNRqGguhqkJrK2Wti3UbkiaJp59bONUzJ9l6oslbLiAdPPvHxuxels1kjhMO98uCMmYUYZoYfqgHFdeJ8r1b1NXZH9rWdH0l0N6Fqd_-i03M9K-o/s1600/DSC_0246.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" height="241" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHfCKDKDfI4MtR8fjmTFc0EvVmgL-pNRqGguhqkJrK2Wti3UbkiaJp59bONUzJ9l6oslbLiAdPPvHxuxels1kjhMO98uCMmYUYZoYfqgHFdeJ8r1b1NXZH9rWdH0l0N6Fqd_-i03M9K-o/s320/DSC_0246.jpg" width="320" /></a>I didn't know how much to divulge. I was definitely being honest that I didn't know what had changed, but maybe that was the problem. Nothing had changed. For years Brennan (who is only a year older than his autistic brother) has had to hold it all together. For years he has had to go into another room and lock the door when his brother is having a meltdown and trying to go after him. For years therapists have come over multiple times a week to play with just his brother. For as long as I can remember he has done everything in his power to keep the peace. Even if that meant giving up his favorite thing or missing out on something he really wanted to do to avoid a public outing nightmare. Even with all of that, I really thought he was handling it in stride. He talked about knowing his brother is different and that he needs more attention and that sometimes he has different rules. He always said he understood when birthday parties had to go a very specific way or when we couldn't watch the movie he wanted because his brother couldn't stand the sounds in it.</div>
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After talking to the school and an outside therapist I realized that although Brennan was talking a good game, there is only so much of that that a seven year old can truly grasp. He knows things have to be different, but he won't really grasp the depth of why his brother is the way he is for quite some time. And all of this time the resentment, anger and sadness about everything he has seen and everything he goes through have been simmering right under the surface. He loves his brother and never wants to say when his feelings are hurt or when he is angry his brother takes something from him or hits him, because he knows it's not his brother's fault. But that doesn't mean it's easy.</div>
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As I was looking for resources to help him understand everything he was feeling, I realized there isn't much available for autism siblings. I saw a number of books that explained autism to siblings, but none that worked through these very real issues he was having and that I assume many autism siblings feel. </div>
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After realizing how much all of this was weighing on Brennan he started counseling and he and I sat down and talked. We talked about times he has been sad about having to leave something he was enjoying doing because his brother was upset. We talked about how it makes him sad when he sees his brother hit me. We talked about how far his brother has come and how now playing together is a lot easier than it used to be. He mentioned that he loves helping his brother and trying to make him feel better when he is upset. I asked him if he wanted to write down some feelings. I told him that it always makes me feel better when I do.</div>
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I looked at what he wrote and some of it broke my heart and some of it made me very proud. I told him there were a lot of other kids probably feeling the same way, but maybe they need a way to talk about it too. He was very open to the idea of sharing his thoughts and feelings about being an autism sibling, but as we worked out some of the harder memories there were some tears. At one point he said talking about certain memories was too painful and he got up and walked away. He later came back to it and said he knew it was an important part of his story.</div>
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We formed his experiences and memories into a beautifully illustrated story about the up and downs of being an autism sibling. As our illustrator Emily Neff brought the story to life, I couldn't believe how moved he was by his own story. We kept our message positive, but we didn't shy away from the hard stuff. We hope that <i>What About Me?</i> will help a lot of families that work everyday through the realities of living in an autism household but always try to see the beauty in being an autism family. We are incredibly proud of Brennan for the person he is and the person he will be and much of that has been shaped by being an autism sibling. We see in him compassion and empathy well beyond his years, and I am so grateful he was willing to share his story to help other kids. </div>
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Now available<i>: <a href="http://a.co/0fuiGNH" target="_blank">What About Me? A Book By and For an Autism Sibling</a> </i></div>
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<br />Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com3tag:blogger.com,1999:blog-4235915141130467358.post-51340764714376418692017-02-09T08:08:00.000-08:002017-02-09T08:08:59.822-08:00When Life is Doom and RainbowsEvery time I write about something that is a harder part of raising an autistic child I am accused of painting a pessimistic picture of doom and gloom. Every time I write about some amazing progress or breakthrough or positive aspect of autism I am accused of painting an unrealistic picture of butterflies and rainbows. I guess that's why I always try to share the whole story. But life, much like a post, will always present what we choose to see. We can choose to see the good or we can choose to see the hard. There are days when the hard overshadows the good and that's okay too.<br />
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I could tell you that this morning we got back evaluation results and our autistic son's speech is much better off than it was a year ago. I could tell you that this morning he had a normal back and forth conversation with our school secretary and it made my heart smile. I could tell you that he told me he loved me when he first woke up and that that's happening more and more everyday. I could tell you that he was invited to a birthday party by a friend outside of school and I could tell you how special that moment was.<br />
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I could also tell you that upon arriving to occupational therapy today he threw himself down in the hallway and screamed that he hated me. I could tell you that he nearly kicked through a glass door and that his sister had to be taken by another therapist to safety while we blocked and managed his meltdown. I could tell you that right after that polite conversation at school he saw a teacher he didn't want to walk with and bolted away from me down the hall. I could tell you that while I gathered him up he screamed obscenities and tried to bash his head into the cement wall. I could tell you I had tears in my eyes as I left the school. I could tell you that while I'm thrilled we were invited to a party we most likely will not go because his behavior has been too impulsive for me to chance it.<br />
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All of that would be accurate. And that was just this morning. Our current status is not butterflies and rainbows and it isn't doom and gloom. We take the doom a day at a time and we rejoice in the rainbows at every chance we get. Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-83163662332179563662017-01-10T18:31:00.001-08:002017-01-23T10:08:11.027-08:00Military Autism Families Fear Loss of Services Amidst New TRICARE Policies <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgynxTTYEmmWiFsYxBHsB3_RVh6s7qCC-abmzieZgaoDhmwvu3TZHAAs6Sq9dcVc2yDCCvqg8wGqDT40vDBjaCFnboS7qLaDvSNA7vuMbVpHE-gfbGft0k_zZavPDC2Ks-elsb_C8xGGi8/s1600/15895122_758693684284699_2972259442407884818_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgynxTTYEmmWiFsYxBHsB3_RVh6s7qCC-abmzieZgaoDhmwvu3TZHAAs6Sq9dcVc2yDCCvqg8wGqDT40vDBjaCFnboS7qLaDvSNA7vuMbVpHE-gfbGft0k_zZavPDC2Ks-elsb_C8xGGi8/s320/15895122_758693684284699_2972259442407884818_n.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An ABA therapist working on fine motor skills <br />
with a military child on the spectrum.</td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">It's the same fight, different year for many autism families across our country. As TRICARE rolls out new policies the ABA and military autism communities are scrambling to figure out what it all means and unfortunately it doesn't look good. ABA is an autism behavior therapy that is currently one of the only treatments endorsed by the medical community to address maladaptive behaviors, help overcome deficits and delays, and provide autistic individuals the tools they need to communicate their wants and needs. This therapy has been known to do everything from giving a nonverbal child words to reducing severe aggression. It can reduce dangerous behaviors such as bolting and self-injury. It can potty-train an 8 year who is still in diapers. It can teach an autistic child how to feed and dress themselves. </span><br />
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<span style="font-family: "times" , "times new roman" , serif;">Many autism families will attest that ABA therapy is value added. Bonnie K. (autism parent) describes what a game changer ABA has been for her family: <span style="font-family: "times" , "times new roman" , serif;"><span style="font-family: "times" , "times new roman" , serif;">"</span><span style="font-family: "times" , "times new roman" , serif;">A</span><span style="background-color: #f6f7f9; color: #1d2129;"><span style="font-family: "times" , "times new roman" , serif;">BA was a huge help for our family. My son went from combativeness and aggression to cooperative and able to attend school.</span><span style="font-family: "times" , "times new roman" , serif;">"</span></span><span style="background-color: #f6f7f9; color: #1d2129;"> </span></span><span style="background-color: #f6f7f9; color: #1d2129;"> </span>Because of similar testimonies and clinical findings most healthcare and state services are moving in a direction that will get more families covered (thanks to the tireless lobbying efforts of <a href="https://www.autismspeaks.org/advocacy" target="_blank">Autism Speaks</a> and other organizations 45 states have now signed on to autism insurance reform). While most state and private insurers are moving towards more coverage for autism families, TRICARE is making it more difficult to access the autism services it already covers. TRICARE requires more ABA provider credentialing than any other insurance, which is costly and time consuming for providers making TRICARE patients harder to serve. Their new policy (which was released at the end of November and started implementation on January 1st of this year) mandates providers administer and submit a behavior inventory every year for services to continue. This is in addition to the re-authorizations that need a specialist referral and severity level to be submitted every six months that families are already burdened with acquiring. Many families have already had reauthorizations rejected in the new year due to the short notice for the required behavior inventory. Thus military kids are already losing services due to the new ill-planned policy changes.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5teGgjUCYWfLrxYNu7WagX1U91yyEldtp1OJpWGxBrqhyphenhyphenSpuoTy_ZkH3qZ2Q2cbAFYsrot5Fr_aW5OSRTqcarKOJAbkqdyQKIU6_ouvmxsaN1tbnbzMQIoP6nj1wUTDu4H9FAbz7Rr7o/s1600/15967355_10102754033352634_537325455_o.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "times" , "times new roman" , serif;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5teGgjUCYWfLrxYNu7WagX1U91yyEldtp1OJpWGxBrqhyphenhyphenSpuoTy_ZkH3qZ2Q2cbAFYsrot5Fr_aW5OSRTqcarKOJAbkqdyQKIU6_ouvmxsaN1tbnbzMQIoP6nj1wUTDu4H9FAbz7Rr7o/s320/15967355_10102754033352634_537325455_o.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">A military child with autism works on gross </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">motor and transitions with his therapist.</span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">And that's not the worst of it. The policy that most worries providers and families alike is the new requirement that already diagnosed kids will need to have diagnosing evaluations re-administered every two years to continue services. The evaluations must be administered by an autism diagnosing specialist, many of whom have waitlists 12-24 months long for an initial evaluation. And many of whom will not entertain the idea of taking up a valuable 2 hour evaluation slot for a child who already has a diagnosis when so many kids are awaiting initial diagnosis so they can start receiving services. The new requirement that seems to be seeking a new diagnosis for a lifelong disorder has everyone pretty confused. Military spouse Cassie J. voiced her frustration with the changes: <span style="font-family: "times" , "times new roman" , serif;">"<span style="background-color: #f6f7f9; color: #1d2129;">I'm just dumbfounded at re-diagnosing every two years. Are they supposed to outgrow autism?! The need for ABA may change, but the diagnosis itself will never change if they were initially correctly diagnosed by a qualified provider."</span> </span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">An ABA therapist practices walking in the "wrong" direction</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">with her client. He has struggled for months with rigidity</span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">as to which way they can walk from his home.</span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">Despite military health care facilities' continual pleas that they are undermanned and unable to carry out such testing, TRICARE has moved ahead with the new policy. Military families are already facing waitlists every time they move, possible regression every time they move and nationwide provider shortages. Provider and autism parent Kerri A. states, <span style="font-family: "times" , "times new roman" , serif;">"<span style="background-color: #f6f7f9;"><span style="color: #1d2129;">As a parent, waitlists are already long. My children have been without services for 6 going on 7 months since we moved." Advocates point out with the new testing requirements access will only be further restricted. While families wait to be retested many fear they will lose services during critical times. Autism parent Kimberly G. cannot imagine what such a loss would mean for her son. "</span></span><span style="background-color: #f6f7f9; color: #1d2129;">ABA has changed our lives. I went from having a non-verbal, angry, unresponsive child to a verbal, happy, connected child. We went from not being able to leave our home due to meltdowns and anxiety to being able to go grocery shopping and go to church.</span><span style="background-color: #f6f7f9; color: #1d2129;"> My child went from not interacting with peers to being a kid that loves being around others and asks to play with friends. He is thriving...</span><span style="background-color: #f6f7f9; color: #1d2129;">Losing services would be detrimental to him right now because he is on such a good path. He loves his therapists and the change in him is remarkable. </span><span style="background-color: #f6f7f9; color: #1d2129;">We live in a small town with one ABA provider. They are overloaded as it is. Having to deal with re-testing and re-authorizations, especially as slow as TRICARE moves, would be a disaster for us."</span><span style="background-color: #f6f7f9; color: #1d2129;"> </span></span></span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "times" , "times new roman" , serif; font-size: small;">A</span><span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">n ABA therapist practices nice play with </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">a military autistic child who has had severe aggression </span><br />
<span style="font-family: "times" , "times new roman" , serif; font-size: x-small;">towards his siblings.</span></td></tr>
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<span style="font-family: "times" , "times new roman" , serif;">This action on behalf of TRICARE and the DoD has families wondering if the government is intentionally trying to limit access to covered services. This isn't the first time TRICARE has slashed autism services and military families have paid the price. In 2014, TRICARE planned to cut autism provider reimbursement rates in half. (<a href="http://thehill.com/policy/defense/220201-pentagon-to-cut-autism-healthcare-payments-in-half" target="_blank">http://thehill.com/policy/defense/220201-pentagon-to-cut-autism-healthcare-payments-in-half</a>) Many providers would have shut down, downsized or stopped taking Tricare clients leaving families with no option for services for their autistic children. Due to the outcry from military families and the media attention, the Pentagon back-peddled and postponed rate reductions. They later came out with a lesser rate reduction based on cost of living. <a href="https://www.blogger.com/(http://thehill.com/policy/defense/272749-pentagon-under-fire-for-proposed-cuts-to-autism-care)" target="_blank">(http://thehill.com/policy/defense/272749-pentagon-under-fire-for-proposed-cuts-to-autism-care)</a> These reductions hurt families in low cost of living areas the most as smaller providers collapsed under the red tape and lower rates. Because of all of these changes and the surrounding uncertainty many military families' services went on hold or disappeared. The most recent NDAA (after many senators and organizations' advocacy efforts) reversed these rate cuts, but for some providers it was too late and those areas are now without services altogether.</span><br />
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<span style="font-family: "times" , "times new roman" , serif;">Families and providers are hoping these newest ill-conceived policies will be re-evaluated as well. They are calling their Senators and reaching out to the powers-at-be in hopes that their voices will be heard. But how long will it take the DoD to realize how detrimental these changes will be for families? And how many military autistic children (who already face a great deal of challenges) will go without critical services in the meantime?</span><br />
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com6tag:blogger.com,1999:blog-4235915141130467358.post-33199660065324446292016-12-13T07:53:00.000-08:002016-12-13T07:53:10.185-08:00Don't Give Up On MeLately I feel like part of being a special needs parent means letting down everyone in my life. I'm sure to a lot of friends, family and teachers it looks like I just don't care. There are days when tasks don't get done well or at all. There are mornings when socks don't match and his hair is not combed because after battling getting dressed, eating something decent and transition meltdowns, the hair was just too much. I'm sure even to my own children it may seem like on some days I am too worn down to have much left to give. And some days I guess I am. But even in my exhaustion and occasional disheartenment, I hope they can see I'm always trying and I hope they don't give up on me.<br />
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To the school that sees us come in late nearly half the time and wonders why I don't volunteer or why the constant forms are never signed on time: Don't give up on me. Please know we are always trying out new methods and new routines to make mornings easier on him. Please know if life is ever not filled with outpatient appointments and medical forms, I would love to volunteer for my oldest son's parties. Please know when it comes to forms sent home in the backpack, they're an afterthought, because they have to be. And when I find them the next morning they go into a stack of papers that I swear I'm working through as quickly as I can. </div>
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To the friends that leave voicemails that go unanswered: Don't give up on me. Please know it is not that I don't want to talk to you. It's not that I don't care what's going on in your life. Knowing that you called or texted, I know that you care and in the spare moments I have when I have enough in me to give you a real conversation I will call you back. I don't know when that will be, but please don't give up on me.</div>
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To my husband when I am often cross and the house is far from perfect: Don't give up on me. Please know you are often seeing the climax of a trying day in which I tried to hold it all together and by the time you get home is when I usually start to fall apart. Know that I want to have a better attitude and a better part of me to offer up at the end of the day, but right now I don't. Please know that I would love more than anything for the house to be picked up, the laundry caught up and dinner to be made (or even prepped), but I know it's a rarity. I hope one day things will even out a bit, and that it will be less of a rarity. I'm not giving up on that.</div>
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To the family that wishes we could visit more: Don't give up on me. There is always the hope that one day traveling will not be such an ordeal. Maybe one day our son will be able to go on a plane. Maybe some day we won't worry about regression anytime we stay away from home. Please don't ever think we do not want to see you, but for now, we do the best we can to do what's best for our family. I'm not giving up on the hope that someday it will be easier.</div>
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To my neurotypical kids who want nothing more than my attention, love, and time: Don't give up on me. There will always be moments when I say "Not right now," but that doesn't mean I don't care. Please keep showing me your Minecraft worlds and the artwork you brought home from school. Please know that even when mommy is tapped out for the day, it doesn't mean I do no love you. It means I need to regroup and reenergize so I that I can be the best mom I can be tomorrow. On the days your brother takes up the majority of my time and effort, know that you are just as loved and cherished, and that I do my best to take care of each of you based on your different needs.</div>
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To my son on the spectrum: Don't give up on me. There will be days when it may look like I have thrown in the towel. There will be days when the most recent therapy or medication seems to be helping you so little that my hopelessness will be palpable. There will be days when I light up at progress, but there will also be days when my inner-cheerleader is not quite as loud. There will be days when I am overcome with joy and optimistic hope, but there will also be days when the grind of accessing that hope gets to me. There will be days I am giving you my all because you absolutely need it, but there will also be days when I have nothing left to give. Please know that through it all, I will never give up on you. And on the days when I'm barely holding it all together, don't give up on me.</div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com14tag:blogger.com,1999:blog-4235915141130467358.post-43159084474424443072016-11-27T10:53:00.003-08:002016-11-27T11:02:19.826-08:00What's Up With Special Needs Families Wanting "All That Special Treatment"?<div class="separator" style="clear: both; text-align: center;">
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Last night I had my rather large six year old autistic son in the seat of a rather small cart at the grocery store. He definitely does not fit in carts as well as he once did and I get a lot of looks and even some comments. Yesterday, I got two comments from the same person during our short grocery trip. Initially, the older gentleman said to my son, "You barely fit in there boy." I just smiled and kept walking, knowing he didn't mean anything by it and thinking he was just trying to make conversation.<br />
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The second time we came across him, he said, "Boy, you got it made. Enjoy it while you can. She can't push you around forever." Once again, I just brushed it off. I could have told him my son would have much rather been out and free to explore. I could have told him I would much rather that my son had the impulse control and danger awareness to walk next to my cart and not ride in it. I could have pointed out that my son has autism and would fit much better if the store had a cart that could accommodate children and adults with any number of special needs. But I didn't. Because as much as I have taken it upon myself to raise the banner of autism awareness, sometimes I am tired and do not feel like I owe everyone we encounter a detailed explanation as to why we do the things we do.<br />
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Although the man didn't say it, I am sure he thought my son was spoiled or receiving special treatment. And even though he did not know my son is special needs, there are a number of people in our society that know someone is special needs and cannot stand the "special treatment" that person seemingly receives. Why does someone with autism need a handicap placard? Why does an autistic preschooler get free preschool from the state? Why does the little girl with cerebral palsy get a one to one aide in the classroom? Why does the little autistic boy get to be in the play if he can't remember the lines?<br />
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<b>But to the people that ask these questions, I guess I want you to realize that more than anything we want our children to be treated the same and have the same opportunities as anyone else. </b> I would have loved it if my son would not have needed special needs preschool from the state, but no private preschools would accept an autistic preschooler with behavior issues who was not potty trained. And when we lived in a county without public options we were not treated the <i>same</i>, we had no options. I would love it if my son was not a bolting risk and parking lots presented the <i>same </i>risk to him as they present to any other child, but the truth is he is much more at risk in a parking lot and parking close could save his life. I would love it if my son could use the <i>same</i> mens bathroom on his own, but he cannot and a family or neutral bathroom is incredibly helpful. The mothers of grown children in diapers would love it if their children toileted independently, but they need changing tables big enough to fit their children and when they do not have the <i>same</i> access to a table that fits they have to change their large children on public bathroom floors. We would love it if our children did not need aides in the classroom, but unfortunately many of our children cannot make academic gains or even function without one. So in order to access the <i>same </i>education, many children need an aide. We would love it if our kid could be in the play, say his lines, and stay in his place without help, but right now he can't do it on his own. I would do everything in my power to make it work, but sadly most of the time, our kids are excluded all together rather than being given help or a chance to be in the <i>same</i> play as everyone else. We would love it if our kids could go on the <i>same</i> field trips and get the <i>same </i>experiences as the rest of their class, but many times they aren't given the option. <br />
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<b>So the next time you hear someone proclaiming that our children with special needs should be treated the same as their typical peers tell them you agree that our kids should have the <i>same </i>opportunities and be treated with the <i>same</i> respect as everyone else. </b> But the way to achieve our children being treated the same is to accept that their most basic needs are genuinely different and everyone has a right to have their needs (not wants) met accordingly.<br />
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com4tag:blogger.com,1999:blog-4235915141130467358.post-52646207794799632722016-11-16T09:06:00.000-08:002016-11-27T09:11:43.144-08:00Why Words Are Never Just Words<div class="separator" style="clear: both; text-align: center;">
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On Thursday my friend's daughter (a beautiful, fourth grade girl with autism) opened her desk and found this note from a classmate: "Just Kill Yourself Now!!"<br />
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Fourth grade. Nine years old. Let that sink in. The school is currently investigating, but what will be done? Will it be enough? Will it stop the bullying? <br />
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In September, 9-year-old Jackson Grubb of West Virginia killed himself after enduring months of bullying. Just one month earlier 13-year-old Daniel Fitzpatrick killed himself after documenting all of the instances of bullying in a letter one month prior. In October, 11-year-old Bethany Thompson killed herself after being bullied for her curly hair and crooked smile. She survived cancer, but could not survive the bullying she endured daily.<br />
These are just a few cases from the last few months of lives lost to bullying. A quick internet search reiterates that the number of names and faces and lives and families goes on and on. In all of the above cases the parents knew. And in all of these cases they informed the school of the problem, with some having multiple meetings with principals and teachers to advocate for their children. But it wasn't enough. And things didn't change. Ultimately, these parents could not protect their children from the hate, ridicule and the verbal and physical assaults that they faced daily.<br />
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Don't tell me bullying is unheard of in our schools today. Don't tell me it's getting better. Don't tell me our kids just need to toughen up. Don't tell me it's not your problem. Don't tell me that schools are doing everything they can. It takes more than an assembly. It takes more than a poster. It will take proactive teachers and caring administrators to stop an epidemic that is killing our kids. <br />
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But the blame does not all fall on the school. This debasement is not "just kids being kids". This cruelty and attitude are learned and emulated. And they are learning it from us. No child learns to hate or mock differences in a vacuum. They learn it from their parents. They learn it from their teachers. They learn it from our leaders. They learn it from a society that tells them different is a bad thing and being different makes someone a target. <br />
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It's evident that many kids still think bullying is okay. The deaths of those who couldn't take it any longer are on our hands. Collectively, we have to take the blame. It's on you. It's on me. Because the culture of intolerance and exclusion starts at home. And it has to stop.Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-80863544767531536692016-11-14T15:37:00.000-08:002016-11-15T07:30:42.923-08:00To the President-Elect from an Autism FamilyMr. President-Elect:<br />
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I don't have to tell you this has been a tumultuous election year. And I probably don't have to tell you that there are a number of autism families (and people across a number of disability communities) that are concerned about what the next four years will look like for us. There are a number of reasons why you should care what our community thinks and how we are impacted, but the most obvious reason is the numbers. One in every 68, Mr. President-Elect, that is how many individuals in our country are diagnosed with autism. And of course the number of people impacted by autism (the parents, the siblings, the teachers and the professionals) is much, much higher. The other reason your team needs to recognize and acknowledge the needs of this community: there are some pretty dire needs. To any leaders who do not think our community is in need of assistance, early intervention, insurance coverage or programs, I implore you: go spend a day in an autism household from sun up to sun down (actually you will probably need to stay a great deal longer than that, because our days never end when the sun goes down and our days always start before the sun comes up). The experience would be enlightening, to say the least.<br />
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Now that I've explained why you should care, here are five ways you can show our community that you do. <br />
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<b>1. Keep and enforce federal education requirements that impact special needs children.</b><br />
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I understand that a number of issues need to be solved at the state level, but as a military family we have lived in three states with our autistic son and let me tell you, the disparity between states is disheartening. Some states are not even following current IDEA or other federal guidelines and if we strip more federal guidelines from our education system, I fear that disparity will be even worse. When we lived in Alabama, our son had no access to special needs preschool and because of his challenges due to autism, no private preschools would accept him. I was told Alabama was breaking the law by not following federal guidelines, but the only way for me to right that wrong was to sue them. There is very little oversight as to federal guidelines states have to follow regarding special needs and that needs to change. <br />
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I understand states' rights, but when states and counties choose to pay their high school football coaches 6 times more than their teachers (no, really), there is cause for concern. When some states look the other way when children with autism are locked in closets half the day, there needs to be <b>more</b>, <b>not less</b>, done to ensure our public schools all over the country are upholding ethical and effective methods with special needs students. When our kids cannot tell us what happens at school, we have every right to worry about their education and safety, and we hope you understand why federal regulation matters to us in this regard. And from a holistic perspective, these things should matter to you too as research has shown that autistic children with access to early intervention and quality early special education have much better likelihood of needing<b> less</b> supports as adults.<br />
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<b>2. Understand why we are fighting for health insurance coverage for life-changing and imperative therapies and fight for it with us.</b><br />
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When our children are first diagnosed with autism we are handed a laundry list of things we MUST do to ensure they have the best chances at the highest quality of life and to become the most productive members of society they can be. Imagine our surprise when most of these therapies and interventions are <b>not covered</b> by private health insurance. There have been strides made in this area over the last ten years thanks to the tireless lobbying efforts of Autism Speaks and other organizations to get coverage. Unfortunately, though, even in some states with now mandated autism therapy coverage, health insurance companies have been able to help shape legislation so they can still legally avoid covering these therapies.<br />
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Under the Affordable Care Act, some families have had their first hope of accessing these therapies. Many families have signed up for much more expensive plans just so they can get this coverage. While the Affordable Care Act is not perfect and needs some serious changes to stop skyrocketing premiums, please understand that when there is a threat of complete repeal, these families are watching their hope that their autistic children could get help and be successful slip away.<br />
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As a military family we have been fortunate to access these therapies when we are stationed at bases in states that have state-mandated coverage. In states without mandated coverage, there are very few providers and even covered families cannot access care. While the rest of the insurance industry and the Affordable Care Act are slowly starting to cover more for autism families, our coverage has become more restricted over the last year, with Tricare lowering reimbursement rates for providers and requiring more provider certification than any other insurance company. This makes military families much less attractive to providers, and many providers (especially in low cost of living areas where rates were hit the hardest) have stopped accepting Tricare patients all together.<br />
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As you can see, autism insurance coverage has a long way to go and it matters. Imagine knowing there were services that would enable your nonverbal child to talk or communicate their wants and needs, to go on public outings that before could not be tolerated, or to be mainstreamed instead of needing special education; imagine knowing those services exist but not being able to access them due to your health insurance plan. That is the position in which many families in our country find themselves. And it's heartbreaking.<br />
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Just as with the federal education regulation, this isn't just an emotional argument; it's an economical argument. When we have years of research illustrating what a difference these therapies can make early on and how such therapies give autistic individuals a better chance at being productive members of society, this is clearly something we can all acknowledge is worth the fight and the expense in the long run.<br />
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<b>3. Realize that a huge population of autistic children are aging out of the education system and work with us for autistic adult housing, vocational training and employment placement.</b><br />
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This is an area that needs serious attention. With a growing population of autistic individuals getting older we need to have a plan in place to ensure their needs are met. As families, we plan as much as we can, but there is only so much we can do. And those of us that have saved and put away funds to support our autistic loved ones when we are gone are constantly worried that those funds will keep them from getting disability or placement. Our son is currently in kindergarten. At his IEP meeting this year we were handed a pamphlet and told that we need to start getting on adult residential placement lists <b>now </b>if that is a concern because the waitlists are so long and residence centers are so sparse. Many autism parents and siblings lay awake at night worrying and wondering who will take care of their autistic loved one when they are gone. We have to have more quality centers, more assisted communities and more programs for adults on the spectrum. We need to offer incentives and breaks for professionals and investors that can make this happen. <br />
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Of course, not all of our autistic loved ones will need adult assisted living arrangements. But even for those higher functioning individuals their employment rates are incredibly low compared to the national average. Many in our community want to work and want to contribute to society, but are often not given the chance or opportunity due to their challenges. Autistic perspectives, work ethic, honesty and talent are an untapped well from which our society needs to start pulling. We need to start looking at ways to incorporate more autistic individuals into our workforce. Programs for specific vocational training and placement could start in high school, especially for those not able or not wanting to go into higher education. Ultimately, such a plan would mean more autistic individuals in the work force and able to provide for themselves. <br />
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<b>4. Realize that many parents and caregivers of autistic individuals are caregivers 24/7 and cannot work, run errands or rest. Work with us to find respite and caregiver financial relief solutions.</b><br />
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I know a lot (and I mean A LOT) of autism families with severely autistic children. Unfortunately, I know very few who have access to or know how to get respite services in their county/state. Most of the families I know have one parent who stays home, not by choice, but by necessity. I know families whose children are too severe to be accepted to daycare or for an in home sitter to be qualified to take care of them at a cost that would not break the bank. Not only can one parent not work, but while many families with chronically ill children qualify for in home nurse care, because our children have a neurological condition that is not an option for us. There are respite services through some states and some programs, but there is so much red tape and waitlists are so long that very few people know how to access those programs. We see study after study showing the mental and physical health strain on parents of autistic children, yet there are few options available for us to have any time to take care of ourselves so that we can best take care of our children.<br />
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We need to look at more ways the national government can help states help us. That may be as simple as streamlining the respite application process or in some states it may mean starting a medicaid waiver program so that families of all economic standings can qualify for much needed respite care. After living in three different states with an autistic child, I can attest that some states will need a nudge to make this a reality for all autism families.<br />
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Many of us are saving the government a great deal of money by continuing to care for our disabled children after they age out of the system and not signing over guardianship to the state. For those of us that choose to take care of our kids well into their adulthood, it should be easier for us to get funds to be our son/daughter's caregiver rather than being forced to put them in a home. For those who have a severely autistic child and are single parent families, they have to have more options for funding as a caregiver, especially when they try over and over again and do not qualify for disability. <br />
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<b>5. Help us find national solutions for autism wanderings and police relations with autistic populations within our communities.</b><br />
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One of the hardest statistics to swallow as an autism parent are the number of accidental deaths due to wandering. Many autistic children and adults have no awareness of danger. Many also have a tendency to bolt or wander. We as parents do as much as we can to keep our kids safe. We have special locks, some of us use harnesses, we are hyper-vigilant in public settings and we are very specific about who can watch our children. Even with all of that, accidents still happen and we cannot plan or prevent every situation, especially as our children get older, bigger, and are sometimes in the care of a school district. When autistic individuals do get away from their caretakers many of them cannot communicate their name or address, or understand if someone is trying to help them or hurt them. Around half of all autistic children exhibit wandering behaviors. And the outcome can be fatal, especially if the child goes near water. Over 90% of autism wandering deaths last year were due to drowning.<br />
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Unfortunately, officials will not issue an Amber Alert for an autistic child gone missing if they have not been kidnapped. Families have primarily relied on social media and local media to try to get the word out that their child, teen or adult on the spectrum is missing. Some communities have started their own local alert systems, but with the number of autistic children that go missing daily we need a national alert system for the autism community. <br />
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Some local police departments have received grants to distribute trackers, but getting one for your child, like everything for special needs families, is very difficult. In most cases, your child has to have already gone missing at least once in the past to qualify for one. But, if we look at the amount of money spent on recovery efforts when autistic individuals go missing (the police, the helicopters, the dive teams, etc), a GPS tracker for every autistic child with wandering tendencies would be less expensive in the long run.<br />
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Another safety issue for our community that has recently garnered national attention: encounters with police officers. Autistic individuals are seven times more likely to have encounters with police than their typical peers. These encounters are often nerve-wracking or even terrifying for people on the spectrum. They cannot always verbally express themselves or understand commands. A sensory meltdown, can also look like a rage and be misinterpreted, especially if the autistic individual is older and bigger. And because people with autism do not always have the awareness to realize the gravity of the situation, things can be miscommunicated and turn tragic very quickly.<br />
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Many police officers have not been around autism enough to have a real understanding of how to handle encounters with people on the spectrum. These two communities need to be able to trust each other. More training is needed for police officers when it comes to mental health and neurological disabilities, but we cannot stop there. I would love to see communities across the country have autism awareness events at which police officers could be exposed to autistic individuals and autistic individuals could be exposed to and try to get more comfortable around police officers.<br />
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<b>Notice What Is Missing From This List </b><br />
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Millions of dollars have been spent on trying to find a cure for autism. Millions more have been spent trying to prove a link between vaccines and autism. As an autism mom, I beg you to look at all of the most current (peer-reviewed) research data on these topics and listen to the current professionals in the field.<br />
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More than 3.5 million Americans fall somewhere on the autism spectrum and if we can shift the focus and more funding from <i>cure and cause</i> to <i>support and care</i> the future for this community and all of America will be that much brighter.Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-72080392116899246752016-11-02T11:51:00.002-07:002017-01-28T09:25:47.200-08:00Why We Let Ourselves Go and Why We Can'tOne of the hardest things for me about being a mom is still making time to be a person. As we put a 1000% of our energy into our kids, we find that we start to lose some of ourselves. At first, it's a piece of identity or the things we used to like to do that get pushed to the back burner because there simply isn't time. Maybe before kids we painted, or read, or enjoyed sports, or had a fulfilling career. Raising littles as a stay at home mom doesn't allow for much of that, not right now anyways. So we say goodbye or put on hold some of those things and hope one day we will have time again to do some things just for us. Not only do most of us box in parts of our identity for a later date, but we also pretty much completely give up self-care. Hygiene slips, hair is usually pulled back, real clothes are shoved to the back of the closet and as long as we can keep going, we rarely see the doctor or make time for own physical and mental well-being. <br />
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As a mom to a child with autism this struggle is exponentially harder. Even after our kids are in school, there are typically multiple appointments a week for therapies and specialists. If we aren't in medical appointments with our kids, we are filling out paperwork for IEP meetings or insurance. Not only do we have to be master schedulers to try to find the time to make an appointment for ourselves, but autism parents have the additional stress of finding appropriate childcare. If we wanted to join a gym, few gym daycares would accept special needs kids. If we need to go to the dentist or the doctor (or the rare hair appointment), very few sitters are qualified and willing to watch a severely autistic child. And even if we find someone who is, handling the separation, the meltdown, and the fallout can often be daunting enough that we do not even try.<br />
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With all of these obstacles to taking care of yourself as a special needs parent, it seems easier to just let it go. And sadly that is what most of us do. We look around and have very little left of ourselves, our health is often deteriorating and many of us are on an emotional roller coaster daily, but keep going. And we keep going until something gives. For me (and many other autism moms I know), the wake up call came after finally getting to the routine doctor appointment and realizing that blood counts were off, blood pressure was high, and overall nutrition and health were plummeting. There is study after study showing that moms (I think most of the studies have looked at moms specifically, but I am sure it applies to parents across the board) of children with autism are more likely to have heart attacks and more likely to have serious health issues. Much of this is due to the stress, the physical strains of being a full time caregiver, the almost guaranteed lack of sleep, and the constant worry. Many of us also develop bad eating habits. We either don't eat at all due to lack of time, eat unhealthy due to convenience, or overeat due to stress. All in all we simply don't have enough time. Not enough time to get to the doctor regularly, not enough energy or time for physical activity, and not enough time to destress. <br />
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So I made a decision. I cannot let myself get so worn down that I cannot take care of my kids. I cannot let myself go to the point I end up in the hospital. I cannot sacrifice myself to meet their needs, because if I am gone I can't meet their needs. We have all heard that you cannot pour from an empty cup, so fill your cup first. I am the first to admit that that is so much easier said than done. There are still appointments for myself that I have not made and appointments I have not kept, but I am trying. I joined a gym and go during the small windows of time that all three of my kids are at school. I would rather nap, but find I actually have more energy if I exercise during those times. When my husband is home, as much as our son fights the separation from me, I go run or go to the grocery store alone. On the days when there is no chance of getting out, I force myself to do something for just me, whether it's putting on a Pilate's video or taking an hour to read. Sometimes that means they get more screen time. Sometimes it means the dishes don't get done. But I am slowly discovering that I will never be the best mom I can be if I give all of myself to them. Since this change I feel better about myself, I am stronger, I have more energy and overall I am a lot happier and more patient with them.<br />
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I know not everyone is in the same situation and not everyone has even the small bits of freedom that I now have since our son with autism has started full day school. And if you would have told me when my kids were 4, 3 and 1 to take some time for myself I would have shot daggers out of my eyes and told you to come babysit. But I guess I want to encourage all of you in the moments of downtime (however fleeting) that you do get, to choose yourself. Try to budget for a sitter every once in awhile, find someone who regularly works with special needs kids and work through the separation issues many of our kids have. Look into respite options offered through your state or your insurance and support organizations that are lobbying for more respite care access and services for families. When respite or a sitter is not an option, take the five minutes in the car between appointments and put on music you like and enjoy a cup of coffee. If you're married and your spouse is able, have them take the kids even if they have worked all day...you've worked all day too. Go for the run. Get the massage. Go out with the girls. Take a bubble bath. Let a few things around the house go for awhile and save your sanity. Know that any time you can make for yourself you are doing it for you, but you are doing it for them too. <br />
<br />Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com11tag:blogger.com,1999:blog-4235915141130467358.post-79196904012979312192016-09-29T10:36:00.001-07:002016-09-29T10:54:55.213-07:00The SuperMom I Don't Want to Be<div class="separator" style="clear: both; text-align: center;">
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Lately, I find myself very tired. Not just physically tired, but a much deeper emotionally tired that seems impossible to overcome. As a parent of an autistic child, I am always searching for answers and better ways forward. At some point, you almost feel as though you are on autopilot. Everyday schedules filled with therapies, doctors, interventions and intense school drop offs and pick ups become the norm. This chaotic schedule is peppered with meltdowns, aggression, rigidity, small victories, small setbacks and an emotional roller coaster. As outsiders look in they watch in amazement at just how convoluted our new normal is.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCfDGxcq0JCXAwzlxRo39KGxcQuxNJ1JsViwd8XoV3OojRNMkrksMM0iGq3jBVB4cHI7JHzoeAUGKB47PgAWfiqAFdEUOOCcD1Jqk-EoZ13Rzv7e8CqCGEL63XvHhupiBGKxqOrpIXSlU/s1600/DSC_0850.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCfDGxcq0JCXAwzlxRo39KGxcQuxNJ1JsViwd8XoV3OojRNMkrksMM0iGq3jBVB4cHI7JHzoeAUGKB47PgAWfiqAFdEUOOCcD1Jqk-EoZ13Rzv7e8CqCGEL63XvHhupiBGKxqOrpIXSlU/s320/DSC_0850.JPG" width="232" /></a></div>
During a recent particularly hard stretch that has consisted of a lot more bad days than good, I looked through my Facebook feed filled with mostly autism pages and ads for autism related merchandise. I saw not one, not two, but three shirts advertised that were boasting of the SuperMom Autism Mom. And it made me mad. <br />
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First of all, for the last few years I have felt like anything but a supermom. I have felt defeated, overwhelmed, sometimes cautiously optimistic, drained, but never super. I've seen the shirt and heard the mantra that "God found the strongest women and made them Autism Moms"...pfff. Or how about regular women get handed an extraordinary parenting challenge and are doing their best everyday to rise to that challenge. Some days we don't get there and there is no switch that flips on magical parenting powers when your kid gets an autism diagnosis. This shit is hard and you hope everyday that your best is going to be enough.<br />
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Secondly, I don't know of one autism mom that wouldn't turn in her cape to get some real support and assistance from professionals, educators, doctors, friends and family. When someone says "I don't know how you do it all..." most of us think to ourselves, "Well, we have to do it all. There isn't a choice." No one is going to hold our hands while we navigate and often fight the school system for proper placement and the right supports. No therapist is going to be there while he goes into a downward spiral over the weekends and spends hours raging. No doctor is going to tell us which therapies, when to give up on therapies, which diets, what's medical versus neurological, when to turn to medication, when to give up on a medication, what will insurance cover, what is the responsibility of the school versus private therapies or how to put all of that together and get a holistic picture moving forward. So we, as parents, do the best we can with the bits and pieces we gather from research, from our kids' teacher, from our doctors, from our online autism community and we map out some semblance of a plan. And all of that does take a colossal effort, but it shouldn't all fall on us. We would love to have more direction. We would love to have someone hold our hand. We would love for someone to get the 10 professionals who work with our kid in one room with us all at once and discuss our ultimate goals and methods going forward. But that isn't how it works, even with 1 in 68 kids now on the spectrum autism parents can't just be parents, we have to be case managers and IEP managers and insurance experts because right now there isn't a better way. If we simply choose not to do any of that, our kid, our families, our life falls apart.<br />
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Lastly, autism parents already feel incredibly isolated. The SuperMom Autism Mom complex sets up the unrealistic expectation that we are supposed to put on a happy face, have unabated optimism and carry our autism awareness torch through it all. Unlike other parents who have a child with a disability, mental or physical illness, we are torn apart when we vent about the hardships autism presents to our children and to our families. We all love our children, but are told we have to love their autism too. While other parents openly discuss hating watching what anxiety, or Sensory Processing Disorder, or OCD, or bipolar disorder does to their child, our autistic children are facing many of the same symptoms and disorders and, yet, I am expected to bury all of that and only talk about my son's amazing memory, unique perspective on the world and his excitement for life.<br />
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Don't get me wrong, I love those things and I will celebrate his successes and him as a person until the day I die, but right now our challenges outweigh our celebrations. Right now I'm wearing long sleeved sweatshirts everyday to avoid his teeth breaking through my skin. Right now I'm frustrated that he's crumbling inside and not a single professional on our team has the solution to stop the fall. Right now I'm exhausted from dodging and taking blows and I'm devastated that my other two children are looking on while it happens. Right now I'm in tears that my baby just had to have a prescription written for an immediate sedative because we've had too many recurrent rages go on for hours. Right now I'm terrified that as this beautiful boy gets bigger onlookers will misinterpret his sensory overload or short circuiting and will call the police. Right now I'm scared that during meltdowns he's screaming phrases he doesn't even understand; phrases that had the doctor on the other end of the phone wanting to call a squad and have him admitted. <br />
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Right now this is where we are. And it sucks. I don't want to put every ounce of energy I have into finding the solutions to get us to a more manageable place. I don't want to spend all of my time advocating for better treatment. I don't want to try a new medicine and hope the good outweighs the bad. I don't want to put up a facade of strength when all I want to do is cry. But there is no alternative.<br />
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I don't want to be SuperMom. I just want to be his mom. Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com8tag:blogger.com,1999:blog-4235915141130467358.post-8498628551624061032016-09-18T11:05:00.000-07:002016-09-18T11:05:11.364-07:00To the Boy Who Held My Autistic Son's Hand<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg54yJs7lTW4no_657LbYFCAec0XL_CYTf7xP9PZNeLxZZkAcqOfseJ3lC-YVDxJOtDrrinPeDfHvbXfUkt3aZcPdLVVGOKoX517SzjjyrywvpGIXcpbmYzNQjlANjDa3RLmW6V8hB4gRk/s1600/DSC_0850.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="232" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg54yJs7lTW4no_657LbYFCAec0XL_CYTf7xP9PZNeLxZZkAcqOfseJ3lC-YVDxJOtDrrinPeDfHvbXfUkt3aZcPdLVVGOKoX517SzjjyrywvpGIXcpbmYzNQjlANjDa3RLmW6V8hB4gRk/s320/DSC_0850.JPG" width="320" /></a>This is your first week of kindergarten. You are nervous and excited. You are getting into a new routine and meeting new friends. One of those new friends is my boy. He comes into your class only for a half hour each day because being in there all day would be too much for him. He goes to recess with you, but he has a grownup right there with him because sometimes he tries to runaway and he doesn't always understand playground rules.<br />
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When I saw the two of you holding hands today, my eyes filled with tears and my heart filled with joy. I know you don't understand why it means so much to me that my son has a friend. I know you are happy to play with a boy who is filled with life and laughter. I won't say thank you for being his friend, because I know you like him for him and not to get a pat on the back. </div>
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I do have a favor to ask you, though. Right now your days are filled with story time, play time and crafts and you both do pretty well side by side. But, you see, my son has autism and I know there will come a time when you will start to notice his differences. </div>
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You'll notice the holes in every shirt he has because when he's anxious he chews on his collar. You'll notice he runs back and forth and flaps his hands when he's excited. You may start to notice he often talks a little too loudly. You will start to wonder why he covers his ears when he's surrounded by people. You will start to notice the stares from other kids when he gets upset about seemingly little things. You will notice he often asks the same question over and over again. You will see he often gets stuck on a subject and can't always move on to talk about something else. You will start to wonder why he rides a different bus or why he spends so much time in another classroom. You will notice he does different school work and he can't ride a bike. You will hear other kids making fun of him. You will then realize he doesn't understand they're mocking him. These epiphanies won't hit you all at once, but I know they're coming just the same. </div>
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For today, I am going to hold onto and cherish the image of the two of you holding hands, blissfully unaware of your differences. But as time goes by and you start to notice, I ask with all my heart that you don't let go. </div>
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Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-91198195900327751292016-09-13T17:29:00.001-07:002016-09-13T17:29:06.228-07:00What are we fighting for?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp29eyPIWZd0mRvf9mxB6UqCNwe9eyaITycMjBbsBUsDMfGkLaFLVEhr4D1Jxj9zm77oNxF2oRBjlOHc9aR2iTBxoniWIPMcYtG8vB7C_eEq1zH5H6ZmNSRMpEVxRtUU6uhAxHNFwbAKA/s1600/wedding-1361076_1920.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp29eyPIWZd0mRvf9mxB6UqCNwe9eyaITycMjBbsBUsDMfGkLaFLVEhr4D1Jxj9zm77oNxF2oRBjlOHc9aR2iTBxoniWIPMcYtG8vB7C_eEq1zH5H6ZmNSRMpEVxRtUU6uhAxHNFwbAKA/s320/wedding-1361076_1920.jpg" width="320" /></a></div>
<span style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;">There's one subject you rarely read about on parenting autism blogs: marriage. I have stayed away from it too. I guess that's because it's not only personal, but it would no longer be just my parenting experience I'm sharing. It involves someone else. It could be considered airing our dirty laundry for the world to see. But it's relatable, it's honest and it's a void in the vault of the written autism parenting experience that could probably use some light.</span><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><span style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;">There are always disagreements in a marriage. As special needs parents there seem to be more. And with the additional stress that comes with being an autism household, boiling points come faster and cooler heads do not always prevail. During our latest (heated) argument my husband and I went round and round regarding the effectiveness of a specific therapy. Are we seeing gains? Are those gains in the right areas? Is it worth continuing when problem behaviors are still such a huge part of our days? Why isn't this helping and what will we try next if it doesn't get his aggression under control? </span><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><span style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;">I personally feel like we are making gains in this area and we are having less severely aggressive incidents than we had a year ago. My husband is frustrated we aren't making more gains and that nobody seems to care or understand the effect his aggression has on our everyday lives. While I'm fighting to press on, he's fighting to press professionals harder. As we butted heads, raised voices and jabbed rhetorical spears my rational brain became irrational. Until he said "In a couple years he's going to be bigger and you aren't going to walk away from those blows" and it cut through my angry haze. And then it hit me, his argument and frustration was stemming from concern. Concern for our son's well-being, concern for the safety of our other children, and concern for my safety. When we have these disagreements, no one is fighting to win. It's so important to remember we are fighting for our child and we ultimately want the same thing. It's especially important keep that in mind before arguments turn into insults and insults into low-blows. </span><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><br style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;" /><span style="background-color: white; color: #212121; font-family: wf_segoe-ui_normal, "Segoe UI", "Segoe WP", Tahoma, Arial, sans-serif; font-size: 13.3333px;"> This argument was just the latest in a string of arguments over the last couple years revolving around education setting, therapies, where we live, and how we can most effectively discipline and teach our autistic child. I could go on and on. But when I look at that list, I don't get discouraged. I see two parents who both vehemently love their children. I see two parents who both care enough to have an opinion about the best way forward, and who will both fight to make it happen. We don't always agree. Sometimes we argue. Sometimes we compromise. But if our children's health, education and mental state are the things we bicker about the most, I think we're doing something right. There are a lot less important things we could be fighting for.</span>Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com0tag:blogger.com,1999:blog-4235915141130467358.post-8715329599640610702016-08-23T13:52:00.001-07:002016-08-23T13:52:14.634-07:00Autism Parents: Navigating a Sea of Perpetual BullshitThere are some places that I expect to have to muddle through outrageous claims and advice about autism. Facebook is one of those places. Autism parents are constantly bombarded with advice on how to best help or even "cure" their autistic children. These opinions are sometimes confined to autism parent support groups in which each parent is giving and getting advice on the best way forward. Other times articles are posted on our walls by well meaning friends who don't know much about autism, but think that something that helped a friend of a friend or a kid on a talk show might help our kid too. <br />
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For parents new to a diagnosis and the world of autism, the amount of advice, recommendations and even condemnations are dizzying. As we stumble through, some of it we will internalize and work to make useful for our lives and our own children. Some of it we will blow off as a total quack method or nonsensical voodoo that was most likely thought up by someone trying to make a quick buck. Some of it we admit could work for others, but we know it's not the best way forward for our child.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-iNFEh8msmH47mQc6wcHDlRjc3shQYSryeXLkPelYkIOiIIQFaPyx7wfbUrK7eHEbWJ3w5-27dTSILR2XLCRwbV2WgEVYvEJ00mYDMGD5r6TGqGfHKvl3URUzjwnPf7VFe21sbVEGg_0/s1600/image1+%25282%2529.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-iNFEh8msmH47mQc6wcHDlRjc3shQYSryeXLkPelYkIOiIIQFaPyx7wfbUrK7eHEbWJ3w5-27dTSILR2XLCRwbV2WgEVYvEJ00mYDMGD5r6TGqGfHKvl3URUzjwnPf7VFe21sbVEGg_0/s320/image1+%25282%2529.JPG" width="320" /></a>Bottom line: we figure it out. We go through our internet interactions wearing our autism armor, only taking advice from sources we trust and people we have vetted.<br />
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Sometimes people with the best intentions get sucked in to pseudoscience and false promises out of sheer desperation. Because this is a known pitfall, most of us are appreciative of the advice we get from our autism internet support networks, but we leave the big decisions between us (the parents) and our child's doctors, specialists and therapists. <br />
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Seems like a legitimate approach, but imagine our surprise when some of the "professionals" with whom we consult turn out to be just as disillusioned as all of those confused internet gurus. It happens.<br />
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A friend of mine with a son on the spectrum who has gone back and forth for a year at a certain medical facility trying to find the right specialist, get an appointment with the specialist, find a way forward for her son with the guidance of a specialist thought her luck was finally changing when she finally got him in to a child psychiatrist. Up until that time her severely autistic son had seen a pediatric neurologist, ABA therapists, general practitioners, OTs, STs, PTs, etc. Even with all of that she had been told his regression was again in full swing and therapy would only do so much. Her concern at this point was treating the mental health comorbidities to help him have more successful days. <br />
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Hopeful that this new set of eyes would be helpful in managing medication and recommending a way forward, they went to the appointment. Much to my friend's shock and dismay, the doc pulled out a book written by Jenny McCarthy and a doctor who should probably have his medical license revoked. To anyone who doesn't know, McCarthy claimed her child was autistic, started a foundation, headed the anti-vax movement in the states, and later said her child never had autism. Her foundation advocates healing autism through homeopathic methods and does not recognize autism as a genuine neurological difference. The doc my friend saw told her to monitor what her child ate and look into chelation therapy (a therapy used to the remove toxins that is not FDA approved and would not be recommended by any doctor in their right mind). After rolling her jaw up off the floor, my friend left the office, had a good cry that another doctor was no help and moved on.<br />
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I think the terrifying part is that this is not an isolated incident. As healthcare coordinators for our children with autism we are constantly wading through bullshit from professionals and support systems alike and we're tired. From the general practice doc who won't recognize our child is autistic because they can make eye contact to the psychologist who says regressive autism is a figment of parents' imaginations. From one psychiatrist who says a medication must be weaned off to another who says the same medication can be used on and off as needed. From one ABA therapist who says extinction method is the only way to truly stop a bad behavior to another who claims extinction is dangerous and should rarely be used at all. <br />
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We get advice from strangers on the foods our kids should or shouldn't be eating. I've actually had someone tell me red dye was to blame for my child's autism in the middle of a meltdown. We face the overzealous essential oil consultant who claims by not using oil on our children's throats we are damning them to a life of silence. We have been told over and over a certain center, a certain regimen, a certain diet, a certain whatever will "recover" our child. And while we are inundated with advice, most of which we did not even ask for, no one seems to consider that we have done our own research. We have tried elimination diets. We have hoped certain therapies would make life easier. We have already heard about the newest thing you're sending us. We are consumed by this need to help our child and thus are already in the know of any new treatments, new information or new recommendations that come out. Another minor detail no one seems to consider: tossing around rhetoric regarding cure and recovery is not only misleading, it's insulting. Advocating recovery is telling an entire population of autistic people they are currently lost and need recovering.<br />
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At the end of the day, we look at our kid and know that we know them better than anyone else. We make all decisions out of respect and love for them and hope that our regrets will be few. The best way for us to help our kids is to know them inside and out and take all guidance with a grain of salt, no matter the source. But, my God, we are tired and making all of those decisions would be so much easier if we didn't have to navigate through the constant bullshit thrown at us as we try to do what's right and what works for our kid. Mandy Farmerhttp://www.blogger.com/profile/06597614838799191045noreply@blogger.com2