America, Extremes Are Killing Us.

Polarizing extremism is hurting our country along with those complacent enough to let the extremes divide us.  Before you nod your head in agreement and think “You’re right those (insert party you oppose) are nuts these days…”, think about your own views.  Are they rooted in reason and understanding, are they your agenda or someone else’s?  Are they stances you have thought through or stances that have been passed down to you from preceding generations?  Most of us could benefit from a step back to get some perspective on what is dividing us.

That means you who assumes every black man shot by police is not complying.

That means you who assumes every cop who's had to use his gun was wrong.

That means you who thinks every person proudly waving our country’s flag is a redneck.

That means you who thinks every man in a turban is a terrorist.

That means you who thinks abortion should have no regulations or restrictions.

That means you who thinks guns should have no regulations or restrictions.

That means you who thinks gays don’t deserve the same rights as heterosexuals.

That means you who thinks people aren’t allowed to say they personally disagree with homosexuality.

That means you who thinks #alllivesmatter is racist.

That means you who thinks #blacklivesmatter is racist.

That means you who thinks every Democrat wants to take your guns.

That means you who thinks every Republican wants to control your uterus.

That means you who thinks our government should enforce your religious beliefs.

That means you who thinks every religion but Christianity should be afforded protected speech and practice.

That means you who won’t agree that some on food stamps are lazy.

That means you who thinks everyone on food stamps is lazy.

That means you who thinks all cops are corrupt.

That means you who thinks all cops are standup citizens.

That means you who thinks all Hispanics are illegals.

That means you who disregards some Hispanics are illegals.

That means you who thinks all social programs are a waste.

That means you who won’t admit social programs are being abused.

That means you who thinks all rape victims are liars looking for a payout.

That means you who thinks all rape suspects are automatically guilty.

That means you who thinks all whites are racists.

That means you who won’t admit some whites are racists.

That means you who fights for transgender rights, gay rights, and black rights but won't fight for the rights of those with disabilities.

That means you who thinks a sign on a bathroom door is going to destroy our country or violate your religion.

We must start using REASON.  We must start having EMPATHY.  We must call for JUSTICE AND RESPECT FOR ALL and admit our system is flawed.  We must LESSEN THE RAGE.  We must INCREASE THE UNDERSTANDING.  We must admit we are divided.  We must attempt to rise above it. 

I was the parent who would never medicate my child; until I did.

Before I was a special needs mom there was a lot more black and white. I was guilty of a lot of opinions, some judgment and more ignorance than I would like to admit.  Before I was a special needs mom, there were a lot of "I would never" proclamations. And one such proclamation was "I would never medicate my child."

Of course when I would talk about this I wasn't thinking about abstaining from medication needed to treat a disease or illness. I was talking about the other medicating. The medicating that still has a stigma attached to it. The stigma that perpetuates the idea that parents who medicate their kids are lazy or don't know how to discipline their children. The stigma that has kept me from writing about this decision until now.

Part of me blames that stigma for my bias. Another part of me recognizes that my preconceived notions were based in my own lack of understanding of mental illness. Even after witnessing our son's inability to sleep, hyperactivity, compulsiveness, anxiety, mania and aggression, we were hesitant and scared to talk to the doctor about medication.

Were we closing doors for him? Were we giving up on therapy? Was there any other way? Would meds change who he was? Could they hurt him? Were we taking the easy way out? Was it healthy to continue on without medicating?

With him only sleeping three hours in a 24 hour period most days and with his anxiety so high it was literally crippling him from functioning, we knew we didn't really have a choice. As his aggression spiraled out of control and therapy was so limited, we knew it was the only way to keep everyone safe. And so we chose to medicate.

There is no magic pill. Even after choosing to medicate, he still works so very hard to overcome the challenges autism and its accompanying conditions present him. He still struggles with anxiety and compulsiveness. He still has and progresses in hours of therapy every week. Even after accessing quality therapy, he was struggling with issues therapy could not address.  We didn't give up on therapy. We didn't give up on him.

Medication did not change him; it helped him. I do not regret the choice and hope that he won't either. And looking back at his pained gaze in moments that his anxiety and senses were assaulting him; looking back at manic episodes that had his blood pressure through the roof; looking back at his absent stare due to another 28 hours of continuous wakefulness; my only regret is not helping him sooner.

He still is a very active little boy. But now he can play with his little sister and I don't fear for her safety. He still jumps and flaps and has an unmatched excitement for life. But now he can go to a new place without shutting down or melting down from fear of the unknown. 

We, as parents, would never let a deadly illness or ravaging disease go untreated in our children's little bodies. Why should mental illness be any different? We owe it to them to not brush childhood and adolescent mental illness under the rug. We owe it to them to be honest that it is real and it can be scary and overwhelming. What does it say to them when we choose to hide certain diagnoses and certain conditions? Doesn't it tell them we buy into the stigma too? We owe it to them to show the world mental illness cannot be taboo, we are not ashamed and they shouldn't be either.

Our society's inability to talk about mental illness openly is the reason we lack resources. Our choice not to talk about it is the reason more people take their own lives over asking for help. When we choose not to talk about childhood mental illness we pull a wool over society's eyes while families across our country go through hell and search for answers.

I was a parent who would never talk or write about our son's mental health issues, but now I am because it needs to be said and needs to be heard.

Beyond the Label; We Are More

I am always surprised by how many parents of not-yet and newly diagnosed children seem fearful of the autism label.  Many keep the diagnosis a secret to try to avoid a certain stigma being attached to their child.  Others avoid an evaluation and/or diagnosis at all costs, because they think as long as it is not written down on an official piece of paper they can somehow avoid the reality that their child has autism.

I don't fault these parents.  I think they are trying to do what they think is best for their children.  We ourselves had some hesitation about being open about our son's diagnosis.  For us, it was never a matter of being fearful of getting a diagnosis, but more so a concern for his privacy and the matter of whether or not it was our story to tell.  When we sat down and had that talk after the diagnosis, we agreed that being open about his autism and proud of who he is was our best way forward.

The label for me has always been more about getting him access to the services and education he needs than anything else.  A diagnosis, in a way, was a relief.  It gave us a plan.  It gave us a way forward and it gave us insight into the best ways to help him achieve his highest potential.

I use both phrases when talking about my son's autism.  I sometimes say he is autistic.  I sometimes say he has autism.  Both to me are labels.  Labels that do not scare me.  Labels that make me proud.  Labels I hope that one day make him feel proud, and not ashamed.

Clearly, I don't mind that my child is labeled.  But I do mind when people can't see beyond that label.  There are so many areas of our lives that have become all about that diagnosis.  I fear that the doctors, and teachers, and therapists working with him will not always understand he is an individual, not a diagnosis.  He is a person, not a statistic.  He is autistic, but he is also just a boy.  He is funny.  He is strong.  He likes to snuggle.  He likes to jump.  Autism may be part of him, but it is not all of him.

And as he enters kindergarten next year, I can only hope that his teacher will take the time to get to know him--not just the codes on his IEP.  I can only hope that she will take the time to let his personality shine through, just as any kindergarten teacher would get to know any new student.  I appreciate that his teacher will be aware of his challenges and struggles from the beginning, but I hope she is also aware that he has strengths and brilliance.  Teachers would never make assumptions about typical students they have never met.  Why should it be any different for our kids?

You may know the label, but don't assume that means you know my child.

Parents across the country asked our autistic children to describe themselves.  And even in houses where autism is talked about openly, all of our kids found a lot of other words to tell the world how they see themselves.  In fact, most of our kids didn't even mention autism; proving that they know they are so much more than any label.  They are individuals; each one with unique characteristics and strengths.  

Autistic may describe them, but autism does not define them.  This is them.  They are boys.  They are girls.  They are more than a label. 

Oscar from Letters From a Spectrum Mom
Our Inspiration 

Jojo from Jojo's World

Maddox from Maddox's Autism Chronicles

Jaxon

Summer from Summer All Year Round

Jake

                                                                 

Oliver from Jojo's world

Noah

Autism and Swimming; Confronting an Epidemic

As a parent of three kids 6 and under (one of them having autism), summer activities involving water have made me uncomfortable for years. Unless it was a splash pad or a pool with only a foot of water we pretty much just avoided it. Even in a few inches of water in the bathtub I would hover within arm’s reach and give constant reminders, “Don’t put your face by the water” or “No standing you could slip.” As we started to see how much our son with autism enjoyed the water we knew spending a summer avoiding pools and lakes was doing him a disservice. It was doing them all a disservice but with three of them and two of us we felt pretty limited. Compounding my fear of my autistic son drowning were the staggering statistics of how many in the autism community lose their lives to water. In 2012, the National Autism Association reported that accidental drowning accounted for 91% of the total U.S. deaths reported in children with an Autism Spectrum Disorder ages 14 and younger subsequent to wandering/elopement. With the many deaths in recent years due to drowning, I assume that percentage has only grown.

I knew we needed swim classes for all of the kids, but I also knew that finding someone to work with and be successful teaching a kiddo with autism would be difficult, if not impossible. We recently moved to the DC area and I heard about Sensory Swim, a program specifically for autistic and sensory challenged individuals. When I spoke on the phone with Andrew and Mary (Sensory Swim’s owners and founders) I asked about a million questions and tried to calm my nerves by understanding their methodology and safety measures. I found out they both had a background in special education and after seeing a demand and need for effective swim classes for our community had decided to apply their knowledge and skill sets to teach our kids how to swim.

We signed up and took the plunge. I watched as my typical son took typical swim lessons alongside our son with autism and was pleasantly surprised by how different Sensory Swim’s methods were from regular private instruction. They started in the deep end and let him get a feel for treading water. With only a few feet between the two of them they would propel him into the direction of the other so he could get the feel of moving forward without being able to touch the bottom. They didn’t try to explain to him how to hold his breath or how to kick his legs. They SHOWED him everything they expected him to do. And to keep him motivated and working each time they would lift him up high and spin him or make huge waves to make him laugh. He would get positive reinforcement every time he imitated what they showed him.

I watched my older son and realized none of the methods the typical swim school was using with him would have worked for our autistic kiddo. He would not have understood the demands put on him and he would have not had enough motivation or silliness to stay engaged. Seeing how hands on Sensory Swim was and how well he responded, a lot of my fear dissipated. And although I know we have a ways to go, seeing him put his head under water without anxiety and watching him know how to hold his breath now are BIG first steps. Watching him get about six feet now doggy paddling on his own, I am hopeful that the goal of him swimming and staying safe if he were to get in the water on his own is within reach.

Andrew with another student.

And as I have watched these successes and milestones and just how happy he is in the water, part of me is aching. We need more. We need access. We need every autistic child and adult in this country to have the chance to learn how to swim. So I sat down with Sensory Swim’s founders and talked to them about how we could make it a reality and what parents can do if they do not have access to a program designed for autistic, nonverbal, and/or sensory challenged kids.

“The most important thing we do is gain the child’s trust. We get that connection with them,” Andrew explained. “About seventy percent of our students have been instructed somewhere else before us and have this traumatic experience of being forced below water before they were ready. It takes a lot for us to undo that trauma.”

Although some organizations are pushing for funding for swimming lessons for autistic children Sensory Swim’s concern is that most of the money is going to swim schools not necessarily trained in how to handle or actually teach special needs kids. They recounted a number of conversations they have had with instructors at other swim schools in which they were shocked to discover the goal was never to get the child to learn how to swim. These programs admitted they do not know how to communicate to our kids to teach them so they just let them enjoy the water and learning to swim is rarely the outcome.

As the demand for Sensory Swim lessons increases, Andrew and Mary have continued traveling and teaching teachers their effective methods. They want more schools to be focused on actually teaching our kids how to swim. “We will tell swim schools and teachers and parents all of our methods all day long. It’s not a big secret. We would be happy if effective special need swim lessons were all over the country as long as they worked.” For now, Sensory Swim is only available in Maryland and Virginia and they travel to each location on different days of the week. They are looking into expanding and hiring on additional teachers, while ensuring safety, quality and effectiveness remain the highest priorities in their program.

Because not everyone has access to effective special needs swim lessons, I asked Mary how she felt was the best way to overcome the child’s fear and for tips on how parents can best teach their autistic children how to swim. She explained, “Whether you are the parent or the swim teacher you have to validate their fear and anxiety. It is real. Acknowledge that it is scary to go under water, but say we can do it together. You just have to make the whole thing a shared experience. Get down to their level in the pool and try to experience it as they are experiencing it.”

She also emphasized the importance of teaching all safety-focused things first. Teach them to get to the side of the pool no matter what their method looks like. At that point it doesn’t matter if they are using correct strokes or whether or not they have the correct form. Let them sit on your knee and reach and propel towards the wall, allowing for more distance each time as they are ready.

One of the biggest obstacles to our children learning how to swim is our own fear and anxiety about our kids’ safety around water. That anxiety often transfers to the child and their apprehension to get into the water can be that much harder to get past. If we never expose them to water in a controlled environment, they will be clueless as to the dangers of water and what to do if, God forbid, they ever wander off and come upon a body of water or a pool by themselves.

We as a community are seriously failing at keeping our kids safe from wandering deaths. The dangers of elopement will always be there for many of our families, but getting past our own water anxiety as parents and making a commitment to teach all of our kids to swim can eliminate one risk that is killing so many. 

Why I'll never say his autism is harder than yours

One thing that shocked me the most upon becoming a part of the autism community was the great divide and the tension between seemingly warring sides of the spectrum.  You don't have to go any further than the comments section on an autism blog to find the division and anger.  I see the derisiveness in our support groups, in our special ed classes and in our internet discussions. I see support groups separating into functioning levels, as parents with kids on opposite sides of the spectrum can't relate to one another.  Amongst parents with children on the more severe end of the spectrum there is this constant one upping.  This constant bickering over whose worst days are worse; over which child's autism presents the most challenges.  When you put it that way, it sounds crazy, right?  Are people really arguing about this or feeling slighted if their child isn't "severe enough" to be considered on the severe end of the spectrum?

Well, in fact, we are.  Maybe I should give you some context.  How many times have you heard or read:

"At least your child talks."

"Oh, he's mainstreamed some of the day?  So he's just quirky, right?"

"Well, you just don't know what it's like to have a nonverbal kid.  It's a different struggle."

"If you don't deal with aggression on a daily basis, you don't know the autism I know."

 Sound more familiar now?  There is nothing wrong with acknowledging that autism is a broad spectrum and it affects everyone differently.  But when we start belittling others' struggles and day to day challenges, we start hurting our entire community.

I was reading comments on one of my published pieces the other day.  One reader said something like "The person who wrote this clearly has a high-functioning child.  They don't deal with self-harming or aggression or destruction."

Except we do deal with self-harming and aggression.  Every day.  We do have our house torn apart and things broken mid-meltdown.  The first thing I thought: How dare this person presume to know what we go through day to day based on one article, based on one day, one snapshot of our lives.

My second thought: Damn, I think I have said something like that before.  I remember a couple years ago arguing with a self-advocate and saying something to the effect of "Well, if you are sitting there typing your thoughts, you have no idea what severe autism is like.  Your opinions don't apply to ME and what MY KID goes through."

How dare I presume to know what someone else's autism is like or how severely they are affected.  That autistic adult could easily be my son in twenty years, possibly able to type his thoughts with some articulation, but also having gone through years of grueling therapy to get to that point.  They could easily be someone who can type their thoughts but still can't speak or someone who still struggles with so much anxiety they cannot leave their house.

I'm sure at some point we have all been on our side of this divide and we cringe when the other side tells us we don't have a right to feel the way we feel.  When people unfollow my page because they see a video of my son talking and they assumed he was nonverbal like their child, it hurts.  Especially as I go through his re-evaluation results this week and see that my beautiful five year old is still performing like a three year old and got "poor" or "very poor" marks in almost every category.  Don't presume to know another family's struggle.

When my friend tells me her Aspie son has attempted suicide again because he is so very aware of his differences and isolation, my heart breaks.  And it breaks even more knowing that before I knew her, I judged that side of our divide.  I thought "Are they really complaining their gifted Aspie isn't challenged enough in school and is having behavior issues?  I would love to have that problem."

My child may never live on his own, but maybe he will find his version of happy and that will be enough.  Your son may never say the words "I love you," but his smile and his hugs are enough.  My son may never stop having explosive moments, but maybe he will learn to get through them without hurting himself or his family. Your daughter may never have a lot of friends, but maybe she will find great satisfaction in what she does for a living.

There are going to be hard days and although our hard may look different than yours, I will never discount your feelings or experiences because they are different than my own.  We're all in this together and if we spent a little more time building each other up rather than ripping the other down our community could move mountains.  

Where this Mom Stands on Politics

As I look out at the 2016 election landscape, I can't help but feel a little sad.  There aren't any candidates in either party for whom I want to vote.  All of the front runners make me scared for our country and the direction it's headed.   When I look at our choices I can't help but ask: where are the normal people?  Where are the candidates that are in the middle and admit not all issues are black and white?  Where are the candidates like me?

I figure most of America is a lot more like me than the candidates currently vying for our votes.  Most of us in America are shaped by our experiences, our upbringings and our current situations.  Our political views are no different, with each passing year and experience molding our perspectives.  And like life our perspectives become complicated and multidimensional with a whole lot of gray.  The truth is most of us can't get on board with one political party's platform, because there are simply too many extreme stances taken on a variety of issues.  Issues that we know are not all black and white.  I have never registered as a Republican or a Democrat, because frankly, I think both parties have more wrong than right.  Unfortunately in a two party system, us independents end up voting for whomever we think will do the least amount of damage, not for candidates we actually like or with whom we agree.

Credit: Sommecards/ KevinBurke

Being an unaffiliated voter, I identify with both parties on certain issues, which doesn't make me indecisive; it makes me human.

I was brought up in a hard working blue collar family.  We had a nice house, but money was tight.  There were times when hiked income taxes on my parents' hard earned money seemed like a punishment for working hard enough to make just a little extra.  There were other times that were harder, when my dad was laid off from the trade he knew during which we relied on unemployment and Medicaid for healthcare for us kids.  As an adult I stay at home with my kids and my husband makes a good living.  As a military family, we have to live in different areas with different costs of living.  We have to secure housing every time we move, which for many families means owning a house you couldn't sell and renting or owning another house you live in.  There are also a lot of costs that come with moving every 1-2 years, living away from family, and having a special needs child.  For all of these reasons we are grateful for tax breaks when we can get them.  I have seen entitlements abused and overused and get frustrated with those that see government entitlements as way of life.  But due to my upbringing and much of my extended family still living in areas where the economy is hurting, I also understand the need for taxation and the importance of government assistance (which is hopefully never looked at as a long term solution, but help getting through hard times).  

I see the cuts of military dependent healthcare and lack of cost of living and housing increases for military families that have occurred under a Democratic president.  It angers me that our Vets and our military families are often getting a lower standard of care than those on government assistance.  I have also seen the waste and incompetence in military healthcare and bureaucracy in general, so I understand the public's discontent with frivolous spending that could be avoided with better organization and less waste.  But based on my military healthcare experience of three hour hold times to get in for a sick visit, medical malpractice without accountability and understaffed facilities that foster inadequate care, believe me when I say you don't want the government running your healthcare.

I see the Common Core debacle and Republicans fighting to get back to states' rights with regards to education.  I do think decisions regarding our children's education need to be made at the state level by educators and administrators not politicians with little experience as to what works best.  But I have also lived in states in which current federal regulations put in place to stop discrimination against children with disabilities are not being followed.  Neither the state nor federal government are enforcing regulations that should protect these children.  Funding is too frequently shifted away from special ed in states where our children are seen as less than.  Seeing the disparity in education across different states first hand, I understand the need for federal guidelines and federal interference in education.  I actually wish there was more federal interference in this regard, as there are so many children going without the education and intervention to which they are entitled and desperately need.

On social issues I'm personally all over the place.  But, to me, it doesn't really matter because I don't think the government should determine or care what happens in our bedrooms or at our doctor's office.  I will say I find it interesting that the more religious among us seem much more concerned with gay rights and abortion than taking care of those that need it most.  It's great if you are prolife because of your religious views, but I hope you are prolife for the duration of that baby's life.  I hope you care how they will be fed and housed if the mom doesn't have the means to do so.  Wouldn't that be the Christian thing to do?  I guess this is why I find it so surprising that evangelicals are rallying behind a man that spews so much hate and complete lack of consideration for those in our society that need compassion the most.

On the flip side, I think if one believes something is wrong or offensive, they have a right to say so.  I don't think there should be "safe spaces" set up on university campuses.  I don't buy into the idea that we all have to embrace a liberal agenda just to keep from being called bigoted or sexist.  One of the things that makes our country amazing is freedom of speech and I am afraid that the politically correct crusaders are stomping out that freedom.

I guess the most disappointing part of this election to me, is that both sides are inciting fear and taking advantage of the fear of the "other".  I don't see passion.  I don't see great ideas that could bring people together.  I see division and fear mongering.  I have seen multiple posts from friends on both sides of the aisle saying "I don't care who our party's nominee is."  "I don't care if they are guilty."  "I don't care if they are crazy."  "I don't care if they are an asshole." "Anything is better than letting the other guys win."

How sad.  So none of these campaigns or their supporters are telling me to vote for some great person or platform.  You are all telling me you are the best of the worst.  And I (along with the rest of the country, I think) am thinking how pitiful that we think so little of our politicians that we hold them to a lower-than-decent-human standard.

  

The Importance of Awareness; The Beauty of Acceptance

We just got back from visiting friends and family a few days ago. On our trip with multiple get togethers something pretty amazing happened. There were still meltdowns when his senses were assaulted . There was still screaming from time to time when his anxiety got the best of him. There were still tears from communication breakdowns. There was still aggression when communication wasn't working. It was all still there. But there was a difference. There was no staring or gawking. There were no harsh remarks. There was a lot of accommodating and many had their get togethers set up with us in mind. No one batted an eye when he saw a Christmas tree and screamed for presents (at people that had already given him presents the day before). We worked through it all and I didn't feel embarrassed or on edge. They got it. And because they got it there was also a lot of laughter. There were a lot of moments that he enjoyed. He made memories and made friends because they accepted him for him.

The reason they got it: Every friend and family member we visited follow my blog and are learning as much as they can about what he goes through with his senses and his communication issues. They also know how hard he has worked to be doing as well as he is. That is awareness, people.

"Awareness" is becoming a bad word in autism/disability groups. One of my favorite groups is imploding due to this argument and I have since left the group, because no one has time for circular arguments that go nowhere. Some self advocates are asserting that parents aren't supposed to talk or write about a disability that isn't their own, an argument that completely disregards the reality that some of our children may not ever be able to advocate for themselves. We are not mommy martyrs for telling about the hard days. We are not objectifying those with disabilities to make us feel better about ourselves when we share stories of accommodation and acceptance. We are, instead, showing the world what accommodation and acceptance looks like and how it can make a difference for individuals with disabilities.

Acceptance is, of course, more crucial than awareness. But how can those outside of our community accept what they do not know? How can they understand what we do not tell them? Had I never laid out what sensory overload looks like, our friends may have thought he was just weird or a brat. Had I not explained that aggression can be part of one of his meltdowns, they may have thought he was just aggressing to get his way. Had I not explained his rigidity and need for meeting expectations, their feelings may have been hurt when he yelled for more presents. Do not discount awareness; there is something to it. Awareness lays the path to acceptance, whether or not others choose to follow that path is up to them.

To those that went the extra mile to make us not only feel accepted, but welcomed, I say thank you. And I say thank you because it's not enough to just know about his differences, it means so much more to accept them.

Today he rode the short bus and it was perfect

I will be the first to admit there was a time in my life when the thought of my child riding the "short bus" felt like a devastating blow.  It wasn't so much the stigma attached to it as it was the far reaching implications of such a need and the realization that things would be so different for our family.  When we realized we were going down a special education path I envied my friends who would worry about things like PTA meetings and bake sales.  Following our son's autism diagnosis and prognosis I worried endlessly about his future.  I worried everyday about how tomorrow would unfold.  The weight of so many unknowns was palpable.

As our son's aggression, anxiety and sensory issues worsened and interfered hourly with his quality of life my worries early on about giving up "normal" seemed petty and ignorant.  As I watched him so often crippled by his fear and pained by his senses, the only thing that mattered was helping him through every anxious moment and holding on to the happy moments that were so far and few between.  During the harder days when he was without services, without mental health care and without proper education, I didn't have enough energy to think about tomorrow or ten years from now.  I was spent just trying to keep everyone in our house safe from one minute to the next, including our son who would self-injure as well as aggress towards his siblings and me.

With his anxiety taking over, the hope of him attending a regular school in a special ed classroom started slipping away.  I was no longer obsessed with him mainstreaming or "fixing" his delays, that was the least of our problems.  When he shook, and screamed and got sick when we all tried to go on a bus for a special outing, I knew he probably would never ride the bus even if he could attend public school.  During the weeks he couldn't even leave the house without incident or sensory overload that affected him for days, I would have fully embraced my son going willingly on a bus (whatever size) to a school that could accommodate him.

So today when he rode the short bus for the first time on a class field trip, I had tears in my eyes and hope in my heart.  He looked back at me about a hundred times to make sure I was sitting in the seat behind him, but he smiled and got a thrill when the bus accelerated.  Guiding him onto the bus and asking him to sit next to him was a little boy that has taken to him since the start of the year. As the teacher explained all that was to come, my son started rocking and his friend grabbed his hand.  I watched them walk together in the hallway and heard this sweet boy tell him the bus wouldn't be so scary.  As we pulled away from the school he told my son he could cover his ears when we got to our destination if it was too loud.

I couldn't ask for a better friend for him.  A friend that is so accepting and aware of the issues my son faces.  A friend who has Treacher Collins Syndrome and partial deafness and has overcome so much already in his own young life.  The other children talked to my son, too.  The boy who sat across the aisle from them called for my boy by name to look out his window at the Christmas lights we were passing.  There was a time when I was so leery of special ed classes and the special bus, but now I see a safe space where my son is not judged.  He is not only accepted; he is liked.  He has friends.    

One of his other friends could not go today due to a seizure and hospital stay.   So, yes, you come to a point where you are not only okay with your child riding the short bus you are ecstatic that he can and did.  Right now seeing him happy and healthy, growing and learning is everything I could ask for and anything else is just noise.  We have hard days.  But today was a good day.  Today he rode the short bus and it was perfect.

My son is making progress and I'm pissed

I have shared recently the progress our son has made working through and overcoming some of the obstacles and challenges he faces due to his autism.  Some responses have been negative noise claiming we are trying to change our child.  I know our intentions and I know my son, so I ignore those.  Most responses have been positive and many are cheering him on.  But one response that has been all too common and most misinformed when sharing progress is the well-meaning celebratory, "I'm so glad kids with autism have so much help these days" or something to that effect.  But, really, they don't.  When it comes to helping individuals and families affected by autism we are so many lightyears behind where we need to be it's despicable.

Don't get me wrong, I am grateful for the progress my son has made over the last few months, but another part of me is angry and disgusted it took moving across the country to finally get him the help he needs.  We are a military family and thus in a unique position in which we experience services and education differences from state to state on a regular basis.  Since our son's diagnosis we have lived in three different states.  He is five and was diagnosed at three years old.

To those who would say simply get out of the military and live somewhere with decent services: I would say getting out of the military would mean we would lose one of the few insurances that cover autism services at all.  While advocacy groups are working towards insurance reform, there are many individuals with autism whose life-changing outpatient services are not covered by insurance.  Many insurances that will cover therapies to assist those with physical disabilities will not cover those same therapies for someone with an autism diagnosis, even if their autism impairs them just as much as a physical disability.  Most families cannot afford to pay out of pocket for these services so their children go without.  Those of us who are lucky enough to have insurance that covers various therapies have to jump through constant hoops to keep those services.  In our case, for instance, Tricare has just come down with an entirely new protocol for our children to receive ABA (Applied Behavior Analysis, behavior therapy).  Part of that new protocol is my physician reassessing and verifying my child's autism and and the severity of his autism every five months (you know because kids so often grow out of severe autism *rolls eyes*).  With so much red tape, there is a backlog of authorizations and lapses in services occur.  These lapses often occur during critical times when our children are most likely to regress (like after a move when we have to go through this entire process again).

Every time I make yet another phone call to check on an authorization or to ask for the status of a referral (while my child goes without therapy for weeks/months as our insurance drags their feet on approval) I think of how many parents do not have the time or energy or knowhow to do this.  I think of how many families whose children are covered but the system is so damn complicated their parents have lost hope for their child to ever get what they need.  I think of how many parents have hung up the phone in tears after waiting for an hour on hold for answers they will never get.  It may be better than it was ten years ago, but this is still NOT a workable system.

Beyond the problems with insurance and costs is the issue of availability.  There are so many families in rural areas and even those that are just outside of metro areas who cannot access services without driving two hours each way.  Even in metro areas families are looking at months or sometimes even year-long waitlists for their kids to get the therapy they need.  Imagine your child not being able to feed himself or dress himself or communicate with you.  Imagine knowing there was something out there that could help him, but having no way to access it due to cost or where you live.  Many have picked up their entire lives to move to states with better services, but that's not plausible for everyone.  And how many parents would have to move away from their entire support system that special needs families so desperately need just to get services?

Our special education system is even more broken than our health system.  From one state to another the disparity in public education and district services is enough to make me sick.  School districts think they are saving money by curbing the amount they spend on early intervention and preschool services, yet this is the time when our children can benefit the most from services.  And yet we have governors calling for even deeper cuts and some calling for the elimination of their entire early intervention programs.  Our leaders and their constituents are completely disregarding the fact that without that essential early intervention and spending they will be spending even more on their special needs population as they get older and are less equipped to function in the world around them.  Until current federal IDEA regulations are enforced in every state, our children will still be far from getting the help they need.  How can we say things are better when over half our population is still going without services or receiving so little that it doesn't make a difference in their lives?

Individuals in the autism community fall victim to a broken mental health care system as well.  Autism is often accompanied by comorbid disorders (like anxiety disorder or bipolar disorder, to name a couple) that require psychiatric care and/or medication.  Finding professionals to treat children or adolescents with these issues is next to impossible in many areas of our country.  As a result, families can be enduring a true mental health crisis with aggression or suicidal tendencies and have absolutely nowhere to turn.  Pediatricians will not medicate with psychiatric medications and wait lists for child psychiatrists and developmental pediatricians can be years long.  What is one to do when their child is a danger to themselves or siblings and no one will treat them?  It's a very real problem that far too many in our community are facing everyday.

Since moving to a state with preschool services our son has thrived.  Since pushing and calling and pushing some more our son is finally getting the amount of in home services he should have been getting all along.  Since moving to a metropolitan area this time around we finally have access to a developmental pediatrician that is helping him work through all of the mental health issues that so often go hand in hand with autism.  He still struggles everyday, but now it's a battle he at least has a chance of winning.

I look back at the time lost and it makes me angry and fills my head with what ifs regarding where my son is today.  I think about that huge percentage of kids on the spectrum not getting the services and education they need and I can't help but think what if... What if every child on the spectrum had access to occupational and speech therapy?  What if every autistic child had a school system that supported them and had the funding to back educators and therapists that could make a difference in their lives?  What if every parent trying to get in home behavior and developmental interventions for their kids didn't have to spend ten hours a week on the phone just to be pointed in the right direction?  What if every individual with autism who had underlying mental health issues had access to a psychiatrist early on that could help them and their family through the darker days?

The numbers are in and autism is not going away.  How can we move forward when an entire subset of our population does not have the supports in place that they need to be as successful as they can be?  How different would their lives and their family's lives look if that support was there?

So, no, I'm not happy that there are now so many more options and therapies for our kids with autism.  It's not good enough...not by a long shot.  This is the reality of the situation and it sucks.  What good are all of the life changing therapies in the world if no one can access them? Too many in our community are hanging on by a thread and we are far from "there" when it comes to the support and help we need.  They deserve better.  That is the reason we are loud about autism advocacy.  That is the reason I am angry about the current state of autism services and supports.  And as an advocate, as a citizen, as a person it should make you angry too. 

        

I Am Thankful

It has been a year of ups and downs on this autism journey.  But in everything, I am thankful.

When the kids are wild and loud and messy, I am thankful.  Chaotic happiness is always better than quiet tears.

When our marriage is strained from the stresses of special needs parenting, I am thankful.  We have made it through another year and I still have a confidant, a shoulder to cry on, a partner.

When our son screams that he is angry or hurting, I am thankful.  It wasn't long ago he didn't have the words to tell me.

When he rocks in public and I get strange looks or rude comments, I am thankful.  He is learning to calm himself when this world is just too much.

When he falls to the ground and melts down in a parking lot, I am thankful.  I am still strong enough to keep him safe until it passes.

Though he only eats eight foods, I am thankful.  Last year he only ate four.

Even though he wakes up every night, I am thankful.  He used to go days without sleeping.

When I think of all that time lacking services and falling behind, I am thankful.  At this moment, he's getting what he needs.

As I sit in waiting room after waiting room for hours, I am thankful.  There are so many lacking care.

When I feel exhausted and drained, I am thankful.  I have three beautiful children whose energy and love of life wear me out everyday.

When I see on the news another child with autism has wandered off my heart breaks, but even then I am thankful.  My child is safe and with me yet another day.

On the days all my time and energy go into helping him cope, I am thankful.  His family understands.

And even on our hardest days, I am thankful for those still there for me so that I can be here for him.

He has taught me to find the wonder in the mundane, to see the beauty through the pain and to believe in the impossible and for that I am thankful.

Dear Senator of the Land Lacking Services: Our Year in Review

*** A letter written to the leadership of Alabama at the request of one of E's former teachers who is fighting to get better services and special education in her state***

Dear Senator,

I have been asked to give you a glimpse into what it is like trying to get services and appropriate education for a child with autism in Montgomery, Alabama. We are a military family and we recently moved away from your state.  We are now living in DC and my son is recovering from our time there.

I say recovering, because our year in Alabama was the worst of our lives.  My son didn’t regress from moving across the country or living in a new house.  He regressed from falling off a cliff into a land of very little services for autistic children with seemingly no priority for special education.  

Upon finding out we were going to be stationed in Alabama, I worried a bit that services would be different.  But we were only going to be there ten months and we would be living near the state’s capital, surely we could make it work.  After all, the alternative would have been to separate our family from my husband for a year—my husband who has already missed major milestones for our children, who has in the past been in a constant deployment cycle, who was coming off of a position in which he worked 14-hour days.  Staying together as a family seemed like the right thing to do.

Before moving I found a center in Prattville where my son could get Occupational and Speech therapy.  I made contact with an ABA provider (Applied Behavior Analysis—the only clinically proven treatment for autism) and got my son on their list and I spoke with Autauga County Schools to see how we would transition from our current state to Alabama/Prattville schools. 

Because I found providers that seemed to meet all of my child’s medical needs, the military approved our move.  They didn’t take into consideration that the county to which we were moving was not following the IDEA and could not provide proper special education for my child.  I was taken aback when the preschool special needs coordinator of Autauga County let me know they did not provide special needs preschool.  She gave me a few numbers to try and said that I would have to find a private preschool that would accept him and then they would bring their services to his school.  Well, there is a reason, Senator, as to why special needs students are federally mandated to receive preschool from the state.  Finding a preschool to accept a severely autistic child still in diapers was next to impossible.  After having preschools hang up on me, fail to return my calls and straight up tell me they would not accept a child with autism I called the county back.  The coordinator then told me that she wasn’t surprised.  She said people there just weren’t very accepting of “special” kids.  You can imagine my shock and anger.  After ten more calls I finally found a church preschool that was willing to accept my son as a student.

So we moved to Alabama in the summer of 2014.  Upon getting there and trying to begin services with all of the contacts we made we hit more roadblocks.  Our son was put on a waitlist for outpatient Occupational and Speech therapy evaluations.  We discovered that the only place that offered these therapies in Prattville had lost their only speech therapist.  We were strung along for months and being told if we wanted to drive to the other side of Montgomery the waitlists there were just as long.  So outpatient speech went on hold.  Our son was 3 at the time and the loss of speech services at a time when we were finally making progress was detrimental to his development.  A few months later they lost their occupational therapist as well.     

We were even more disheartened that the life altering ABA our son was supposed to start receiving was so limited it would hardly be beneficial.  We were told by Tricare that based on our son’s severity we could be getting up to forty hours of therapy a week.  This may seem like overkill but the American Academy of Pediatrics recommends at least 25 hours of ABA a week for an autistic three year old to make successful strides.  There were unfortunately very few providers in our area, not in Prattville, not in Montgomery and virtually no providers set up to offer tiered model services [where therapy is given by both BCBA’s (Board Certified Behavior Analysts) and behavior techs to maximize quantity and quality of care].  We were initially told our son would be getting 10 hours of therapy a week, but we never saw more than 4 a week with the first provider.  He was stretched thin driving from one county to another to provide services and he often would show late or not show at all.   He told us that with no state mandate for health insurance to cover ABA therapy, military families were the only ones covered and therapists had no incentives to practice there.  He said he couldn’t find qualified techs to provide more hours.  Meanwhile I was making more phone calls to see if there were any other ABA providers that could provide better care.  I was given all of the same numbers…all dead ends or waitlists so long we would not be seen until after our 11 month assignment was up.

With outpatient services clearly lacking our last hope was that the school district would be able to provide us with some support.  We were not so fortunate.  Our son with a severe autism diagnosis was given 40 minutes of speech a week (broken up into two sessions), 40 minutes of occupational therapy a week and 40 minutes of “special instruction”.  We had been coming from an IEP where he had 15 hours of school a week and a speech therapist assigned to his classroom who worked with him every day he was there.  A setting in which he was making great strides.  Even in the transitional IEP period Autauga county ignored the laws that state an IEP incoming from another state must be followed until a new one was agreed upon.  Our son having just been diagnosed, we were new to the system and confused.  We pressed for answers, but were told time and time again that funding for special needs preschool was not in the budget.

And our son regressed further into his own world.  I was carrying him in kicking and screaming everyday to a preschool that was not equipped to handle him.  He would try to run out of the classroom, he would sometimes scream nonstop because he couldn’t handle the commotion of the classroom, he would throw chairs and attack his brother (who also attended the school) when other children would cry.  The teachers were caring, they tried their best to accommodate us, but there were so many mornings when I left in tears because going to school had become so traumatic for him.  There were mornings where he would fight getting dressed for an hour and I would throw in the towel because I didn’t have the stamina to put up the fight to get him there.

Without any level of quality behavior therapy, his at home behaviors began to spiral out of control.  We had broken televisions, siblings with bruises and bite marks, and our household was going through a trauma that you can’t begin to imagine.  Our almost four year old (at a hefty and strong 45 pounds) had me in tears on a daily basis.  I worried for my other children’s safety more than anything else.  We knew it was just a matter of time until he put one of them in the hospital or worse.  I called everyone I could think of and no one was of any help.  I called our doctor daily to ask if we were any closer to finding a developmental pediatrician she could refer us to so that we could medicate him and hope to get the aggression under control until we had better therapy options. 

I was put on hold, brushed off, told that they were doing the best they could, told that I could leave yet another voicemail.  None of the pediatricians within 100 miles of the state’s capital were comfortable prescribing psych medication.  I called psychiatrists and psychologists only to leave messages that were never answered.  On one of our worst days, while he was screaming and I was sobbing, the nurse finally came to the phone and finally got us a referral to a psychiatrist that would see him, but we would have to go through another month of hell before we could be seen.

We eventually pulled him from preschool, feeling like we had no other choice.  At our own expense, we found a special needs school that would take him and who had experience with children on the spectrum.  The school was great for him, but we found it too little too late and he was only able to attend for a few months.  My guess is that this school (New Hope Academy) is probably the only reason Autauga County has been able to continue with offering such abysmal special needs education to their youngest students, the ones who need it and can benefit from it the most. 

When I spoke to an advocate they agreed that Autauga County was breaking a great deal of federal mandates, but the only way to get them to change their policies would be to sue the district.  We have acquaintances who are also military who went through a similar ordeal in Montgomery county and had to sue the county, which hardly seemed practical seeing as how we were leaving the following summer.

We bounced from one ABA provider to the next, all promising they could offer us more hours, all not being able to provide services or being able provide a couple hours every few weeks.  About six weeks before our time ended we were able to finally get 8 hours of ABA a week and found speech and occupational therapy 45 minutes away after enduring a long wait list and that was only because I spent 10 hours a week on the phone trying to make it happen.

And then we left.  And now he is getting what he needs and he is recovering from a year that was very hard on all of us.  It is always a fight to get him what he needs, whether it’s a fight with insurance or a fight with the school district, but here we at least have a chance at winning those battles.

In Prattville, Alabama the cards are stacked against children with autism, they have very little hope of accessing the care they need to meet their highest potential in life and sadly many of your residents are unaware that such life changing therapies even exist.  I can’t describe to you how heart wrenching it is to know there is something that could be saving your child’s life and mind and not being able to access it due to funding and availability. 

I think of all of the families still there and how much money the state and federal government will have to spend on those individuals as they age out of a broken system without having been given the tools they need to succeed in life.  I think of friends we have and the tears they have shed for their children knowing they will not get the chance to succeed because legislators in your state and school administrators in your districts do not think their children’s education or quality of life matter.

The Air Force sends their best and brightest officers to Maxwell AFB for Command College and War College.  Unfortunately, it is becoming quite clear that the Montgomery area cannot support families with children with autism due to a lack of services, a lack of qualified providers and profound deficit in its special education offerings (particularly at the early intervention and preschool levels).  We, along with several other families, contacted the Exceptional Family Member Program office at Maxwell—the office that clears families to be stationed there—and informed them of the dyer situation.  We were very adamant that families with children with moderate to severe autism should not be stationed at Maxwell AFB.  Once the EFMP office starts turning down families to be assigned at Maxwell, airmen will have to come to Maxwell without their families, pay for living in two separate locations and their families and morale will suffer.  Not to mention if airmen are coming without their families, they will not be renting out the same caliber of housing, the local economy will not benefit from the spending the family would have been doing in your stores and restaurants.  Having the Air Force colleges located at  Maxwell is not sustainable if the counties surrounding it cannot meet minimum federal standards in providing special education to our children. 

  

This is our family’s story, but rest assured, EVERYONE who has a child with moderate to severe autism is going through this horrific struggle throughout most of your state.  Even though we are no longer stationed there, my heart aches for that special needs community.  I am hopeful that the leaders of Alabama will step up and pass legislation to mandate autism insurance coverage.  I am hopeful that the leaders of Alabama will acknowledge the shortcomings of their public schools and enforce federal and state laws that are already on the books.  Money set aside for special education should not be allocated into different areas.  Studies have shown spending on autism intervention early on can save states a great deal of money in the long run.  If children are given a strong foundation, they have a better hope of mainstreaming and not needing lifelong support from the state.  Even with that being said, I hope leaders of your state will stop looking at the bottom line and realize these numbers have names, they have faces and they have families.  And you are in a position to help them.

Sincerely,

Mandy Farmer