Tag: Autism Spectrum

What we did this April was…

What we did this April was…

Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!

When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen.  I mean, plenty of people have loads of ideas, don’t they?  I needed to be sure I was well armed with better groups to align with, more current information.

And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.

And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.


Dreadful photo of me, I’d just returned from having the flu and pneumonia.  Gack.  But my friend Erin makes this photo better, yes?  

So… it’s nearly the end of the month.  I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community.  I’ve heard their stories and shared mine, including my own personal move into self-identification.  This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.

And just because April is nearly done does not mean that my our work is over.  No way.  Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year.  Our work has only just begun, lovies.  Are you ready?

Image shows a woman with blonde straight hair, wearing a white shirt that has the words “autism is not a boys’ club” on it.  

The beginning of the most important journey of our lives…a.k.a. Chapter 1.

When we had our first son together seven and half years ago, life was relatively simple.  I had been married before, as had my fiancee (now my husband).  I had ended my previous marriage and we shared custody of my two sons from my first marriage.

So there we were, with a new baby and two pre-teens.  Wait.  Did I say it was simple?  Okay, it wasn’t at the time, but when I look at how life is now and look back to that time, we had it kind of easy.  We were making very little money but by gum, we had LOVE on our side, right?

Starry-eyed and raising this brand new life, we were totally unprepared for what would come a few years later, when our second son was almost one year old.

Can anything really prepare you for that moment when you realize that things may not be progressing typically with your child? I remember moments when he was about 8 months old when I’d be holding him and rocking him to sleep.  I’d remember the scene in Mr. Holland’s Opus when his wife realizes that their son is deaf. And on some level, I knew.  I didn’t know what I knew, but I knew.

A few months later, my husband voiced his concerns to me. “He doesn’t look at us when we say his name or when we speak at all.  I think something’s wrong.” He was right- our very smiley, happy child was no longer looking at us.  Most kids at 11 months old are at least looking up when a parent says something, but he did not.  He was happy, but distant. At first we thought it was his hearing, and we talked with his pediatrician.

She referred us to the Ear, Nose, and Throat doc in town, and suggested that we call Early Intervention so that they could come and assess his development.  He was missing out on some of the standard developmental milestones.  By the time he was a year and a half, he would get tubes in his ears to hopefully bring an end to the many ear infections he had as an infant. At the same time, he was receiving speech therapy and “special instruction” to help him learn how to play with toys in an appropriate manner (don’t get me started on that, I have a whole separate post on “appropriate” play).  He was seen by social workers and specialists galore.  He had one hearing test after another, all inconclusive.  A month after the tubes were put in his ears, he had what’s called a “sedated ABR”, or auditory brainstem response study.  This is a test which measures the brain’s response to sounds, and the patient is sedated.  This was our first conclusive test- he had perfect hearing.

Finally, we had a better idea of the direction to head. This was not medical at all, but developmental. His pediatrician referred us to a developmental pediatrician at a hospital two hours away.  They had a long intake process and were booking quite a ways out.  Four months later, almost exactly one month before his 2nd birthday, we were given his official diagnosis of Autism Spectrum Disorder, a Global Developmental Delay (he was delayed by about 18 months), and a Sensory Processing Disorder.

Luckily for us, we’re a rather “clinical” household, as I describe us to physicians.  That is my way of saying “don’t tiptoe around it, just say what it is”.  We’d already done a lot of research by diagnosis day, so this was no shock to us.

By the time he was three, he was aging out of Early Intervention services, and we found him the most perfect integrated preschool.  He was the smallest and youngest in his class, a tiny little non-verbal boy with a pacifier in his mouth and two small plastic animals in his hands everywhere he went. He communicated by pointing at things, and using the few ASL signs that we’d learned as a family.

He developed an incredible bond with his teacher and his aides, people that I am so grateful to continue working with.  About midway through his second full year at the preschool, he began to speak.  I finally heard his voice, and I sobbed.  From there, he continued to flourish, and now he can speak at length about his favorite subjects.

When he finished his second full year (including summers) at the preschool, we braced for him to move into the school district, in a gen ed classroom with a fabulous teacher and a 1:1 aide.  Now he’s in 1st grade, reading well and writing well.  He’s still got needs, and we’re meeting every one as they come up.

All along our path, things have just kind of…aligned in our favor.  I can’t say why, but I do know that no two families travel this path in the same way.  We bring to it our own personal experiences, knowledge, heart and soul.  And no two days are the same, either.  Some mornings I cry on the drive to work.  And then I dive headlong into helping other families so that I can feel some sense of purpose.  Other days are more easy to manage, and on those days I realize how lucky we are to have kids who have taught us so much more than we ever thought possible.

On to chapter 2…

A new diagnosis

Two days ago, we made the two-hour drive to see the specialists who gave us our youngest son’s diagnosis four years ago.
This time, we were going to see if we could get to a more definitive diagnosis for Speedy, because while we felt like we were standing in the right forest, we definitely were not barking up the right tree… it didn’t seem enough to simply classify it as combined-type ADHD, and we’ve gotten nowhere with medications so far.

The psychologist who saw him a few months ago agreed, and at that first appointment he couldn’t even get through the evaluations with Speedy.  He is just so… speedy.  This time we took a different approach, with me listing off all of the long-term behaviors and sensory needs, social skills needs and anything else that might fit the bill.

After a half hour of working with Speedy, they emerged and he told me that he absolutely felt comfortable expanding his diagnosis to included autism spectrum disorder. Speedy felt it important to interject, “the numbers on the clock are WRONG.  They are not first grade numbers at all.  You need to change them…I’m watching you….”.

​After a moment to hide a smile, the doctor did say that if we were working with the DSM-IV, he’d receive a diagnosis of Asperger’s Syndrome, however that is now all lumped in with ASD under the new criteria.

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Occasionally it washes over me that something that was never even on our radar five years ago now utterly consumes us. This life we live, it’s not for the faint of heart. It’s not what we expected at all, and yet here we are. Day after day, tirelessly advocating not just for our children but for all children and adults with disabilities. And you know what? While I clearly wouldn’t trade it for anything, I’m so so tired.

When our children are their advocates

When our children are their advocates

Seeing our children advocate for themselves is the goal of many parents. We teach them the rules of living in the social world and we teach them to question that which they do not understand.

The method to getting there is a little more labor-intensive with children on the autism spectrum and/or with ADHD. My husband and I often talk about taking the “scenic route” to get to these goals, as we often have to navigate our children’s various challenges along the way.

For neurotypical children, it starts early. From the first time that your toddler tells you “no!” they are well on their way to understanding self-advocacy.

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(Image shows a young boy looking out a window)

This sometimes can take a year or even two years longer for some children, and may never happen for others- not in a standard way, that is.

Behavior is communication

Remember this phrase- it will get you through the tough moments, I hope.  Behavior is the communication of need, my mother tells me after a lifetime of working with children and families in crisis.  This is absolutely true, and the behaviors we see don’t always translate in a very obvious way.  This is to say, when you see your child jumping on the couch all the time, this doesn’t always mean that they want to jump, but they are trying to communicate something…

But what??

If behavior is the communication of need, then the next step is determining what they are telling you through their behavior.  A person with a sensory processing disorder has a need for certain types of movement and sensory input, and there isn’t just one type of thing that will fulfill that need.

(You may hear an occupational therapist refer to proprioceptive and vestibular input.  These are connected to how we perceive our body’s position based on movement.  If you have a sensory processing disorder, the information may not be reaching its intended destination in your brain, or may take longer to get there).  

A “sensory diet” is a list of activities that is typically provided by an occupational therapist.  This “diet” is designed to help your loved one with his or her sensory needs, and includes a variety of activities such as:

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Using a body sock!
(Image shows a boy standing up inside a stretchy body sock)

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Smooshing into a beanbag!
(Image shows a boy lying on top of a beanbag, pushing into it with his face)

Other helpful activities can include swinging or gentle squeezes.  I like to think of it this way: for people with a sensory processing disorder, it’s as if they don’t always know where they end and the world around them begins.  The information coming into their brain through their five senses is getting jumbled, and this input gives the brain confirmation of where someone’s “edges” are.
I picture a comic strip character: thick, dark lines outline the character.  When you take those thick outlines away it becomes more difficult to tell where that person ends and where their comic strip world begins.

I may seem to be getting off topic, but I promise, it all leads to one place (remember- we’re taking the “scenic route” to get there).

Do you remember what I said about behavior?  It’s all about communication- for our loved ones who take a different path to get somewhere it’s all about getting their needs met and helping us to know how they feel.

If you follow my blog you may have read the post about social stories.  If you haven’t read it yet, you can find it here.

This past Sunday, we decided to try the trip to Target again, with a twist- this time we only went to Target.  I went with WonderBoy, my husband, and the Teen.  There’s a lot to be said for the three-to-one ratio.

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(Image is a boy in a store, holding a stuffed animal against his chin.  There are two people                                                                 behind him, looking at DVDs)

WonderBoy stimmed the entire time we were there the previous week, but this time he decided to sit in the cart.  This provided him some sense of security, and he was more at ease.

I reminded him of what we were doing: “We’re just getting a few items today, and we only have time to be in Target today, okay?”  I found myself repeating these words on what felt like an endless loop.
“Just getting a few things today,” he’d repeat.  Then he’d ask, “And then we will go to the mall?”
This has been the struggle- to get him through these social situations like shopping. “No, not today.  Today is just Target.  We will have time to walk around inside Target once we get what we came for, okay?”
I wanted to be sure that he understood what we would be doing today.  “Remember, once we’re done shopping we will pay and then go out to the car with the things we bought.  Then you can have a special treat!”
After finding the special treat of  his choice, we paid for our items and made our way out to the parking lot.

With papa on one side of him and me on the other, we took a moment to congratulate him- “You did a great job in the store today, buddy!” to which he replied, “that wasn’t me.”  That told me so much with three words.  He continued by later telling me that he didn’t want to talk about it.

You may wonder why I connected this moment to a post about using behavior as communication.  For our children, communicating how he felt about his success in the store involved more than simple words.  He showed me through body language, and through his need for time in his sensory room when we were home.

That level of advocacy is something that makes my heart fly above the clouds.  We were told early on that he might never talk.  For him to be able to tell us that he isn’t in the mood to discuss this major success in his life goes beyond just the words themselves.  It tells me that the day was hard for him, and that we’ll talk about it on his terms.

Behavior is the communication of need.