Sunday, August 18, 2019

I want to tell you a story...

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 the next or trying to remove a toy from his hand to bathe him would cause severe meltdowns.

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.

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.

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.

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.

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.

Our kids both got an autism diagnosis. My son was diagnosed as severely autistic. Her son was diagnosed with PDD NOS.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Friday, June 7, 2019

When Military Life Doesn’t Work For Your Child With Special Needs

After seven moves in ten years, here we are.  Moving into a neighborhood that we have carefully sought out.  Moving to a city in which we are near family.  Moving to a school district from which our kids will graduate.  And, finally, moving to a state with adult services that can support our special needs child when we are gone.  Our last PCS.

I have heard a great deal being said about special needs families in the military.  I have heard we use EFMP (the Exceptional Family Member Program) to cherry pick assignments.  I have heard we try to bypass EFMP to continue getting needed assignments.  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.  I have heard my child is a burden on a system lacking medical expertise and funding.  I have heard our service members stay in just for the health insurance our special needs children desperately need.  I have heard our service members get out and use their family as an excuse as to why they couldn’t keep going.

I can’t speak to all of that and I certainly can’t speak for all special needs military families.  I can speak for our family and for myself.   I can say this life has been unnecessarily hard on my special needs child.  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. 

Over the years we have not used EFMP to get ‘good’ assignments.  We have done everything in our power to keep checking boxes so my husband’s career could progress.  For many of us that means researching areas and finding providers that will work that the EFMP office may not be aware of.  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.  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.   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.

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.”

Did my spouse sign up for the military?  Yes.  Did I marry someone I knew was a career military man?  Yes.  But we did not sign up for this. 

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.  We did not sign up for a child whose educational needs are so significant that some public schools cannot safely accommodate him.  We did not sign up for regression and mania and mental breakdowns with every move.  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.

While we didn’t sign up for a child with special needs, we wouldn’t change it and he blesses us every day.  Naysayers would be right about one thing, though.  Military life (as it currently operates) does not always work for a family like mine.  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.

And for families like ours the choice to stay or go is not always so black and white.  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.  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.  And some keep going, picking up the broken pieces with every move or working ten times harder so their child will thrive.  Military parents of special needs children do not always feel like they can continue serving their country and their children’s needs simultaneously.  Every new assignment and every additional year can feel like a choice against your child.  It can feel like another year or two that they are set back on waitlists for needed services.   

Had my spouse kept climbing the ladder, we looked into the future and saw not one or two more moves, but at least three.  And probably another remote and a possible two years of living apart.  And at least another four years before our son could get on a Medicaid waitlist (lists that are often 5-10 years long). 

I don’t write this for pity or justification, but only to point out a few growing trends.  The military as it currently operates cannot expect the retention for which it aims.  They cannot retain service members if they cannot retain families.  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.  Families only have so many moves in them before they say,  “Enough”.  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.

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.  This is our last military move.

Wednesday, December 19, 2018

Reflecting on Aggression; Embracing Hope

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.

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.

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.

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.  

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.  

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.

"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 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.

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 not something a lot of autism families deal with. Some daily. Some hourly.  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.

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.

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."  

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."

And he very matter of factly said, "It doesn't feel good when I hurt you.  I'm always sorry.  This is better."

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.

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.

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.

Sunday, August 26, 2018

Back to School Sales and Must Haves for Your Sensory Kid

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.  

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.

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.

Chewigem USA

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.

Use Code: B2S 15

Heartek Ear Protection

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.

HICKIES No-Tie Shoe Laces

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.

Senseez Vibrating Cushions

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.

CODE: school

Bouncy Bands

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!  

Bouncy Bands

Therapro Pencil Grips

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.  

You can get free shipping right now for orders over $35.

Wiggle Disk or Wiggle Seat

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!

Handheld Fidgets

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...

Weighted Blankets

 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.

Check out Sensory Goods.  They have a special going and you can get your weighted blanket 20% off!

Another great option for a more personalized blanket is JudysLilQuiltFix 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!

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.

Here's to a great school year!

Sunday, August 5, 2018

Life being hard doesn't give you a pass to kill your autistic child

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.  

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.  

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.  

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?"

That sounds ridiculous, right?  Because it is.  There is no amount of parental desperation that justifies murder.  Ever.

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.  

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.  

Monday, July 9, 2018

Like Mine

We met at a park
I wondered right away
But I knew for sure over time 
Your boy’s a lot like mine

I saw his explosive moments 
And the look of defeat in your eyes
I wanted to tell you 
Because I’m not sure you know

I saw his tears over the wrong color cup
I saw the panic in your eyes 
I wanted to say I’ve been there 
But I don’t know if you know

As kids around him play he lines up his toys
You play it off and laugh
I want to ask the question
But I’m not sure you want to know

Your boy talks in sentences
Your boy does okay in school 
So I’m not sure you see

I see how you look at mine
Because your boy doesn’t flap and rock
He doesn’t chew holes in his shirts
Your boy doesn’t say the same word over and over
Or need headphones to get through the day

After seeing your reaction to my boy today
It became clear to me 
You don’t want your boy to be

A lot like mine

Wednesday, April 4, 2018

I know you have heard of autism...

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.
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?
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?
Do you know autism can occur by itself, but it can also be accompanied by other disorders that can make it that much harder?
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?
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?
Do you know autism can mean speaking too loudly for the venue, but can also mean speaking too quietly to be understood?
Do you know autism can bring on extreme interests, but can also mean extreme disinterest in surroundings, people or toys?
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.
Autism can mean bolting and wandering and flight risks, but it can also mean debilitating anxiety that makes it impossible to leave the house.
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.
Autism can mean not being able to dress oneself, but can also mean taking off clothes when angry or uncomfortable.
Autism can mean slower processing time, but can also mean unbelievable memory.
Autism can mean excitement for life and unmatched joy, but it can also mean lifelong struggles and sometimes needing lifelong care.
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?
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.

Tuesday, March 6, 2018

Too Real and Too Tired For Nice

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.

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..."

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.

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.  

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.

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.

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.

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.  



Monday, November 13, 2017

Someday, I Won't Have to Write About Autism Anymore

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.

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.

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.

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.

Monday, October 30, 2017

Off Meds and Scared Shitless

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Tuesday, June 6, 2017

Does He Look Like A Zombie?

Every time someone writes about some children needing medication for their mental health there are always at least a few comments, verbatim:

"I don't want my kid to be a zombie."  
"I would never medicate my child!"
"There are so many other options."
"Parents who medicate their kids are lazy."

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?

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.  

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.

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?

I don't see a zombie.  I see a happy boy who I love and would do anything and everything to support.

I want to tell you a story...

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...