Our Autism Story

11/08/2016 House of Geekiness 6 Comments

For the longest time, I thought I was a bad mom. Growing up, I thought I was just a weird person and that's why I didn't fit in. If only I'd know then what I know now...

Me (about 4 years old) on one of my "better" fashion days
You know those awkward kids you see in movies? They've got nothing on me. I was the queen of awkward and weirdness. No one really understood why. My sisters were baffled that I wouldn't let them play with my hair or teach me how to style it. I had absolutely no concept of my physical appearance. In fact, my fashion sense was wearing whatever I felt like (which lead to some of the absolute worst school pictures you'll ever see) and my hair had to be almost shaved off (literally) to remove all the rat's nests because I couldn't stand to let anyone brush it.

Thankfully, I was blessed with friends and family who care and the problem-solving skills to learn to manage some of my worst behavior issues (I no longer recite entire Steven Wright sketches during church or expect everyone to recognize obscure movie lines that I quote—and sometimes completely alter to fit my purposes). We won't even begin to talk hygiene because I don't want to make anyone sick.

Several years ago, someone told us that they thought our oldest kid might have autism. This was mostly, she said, because he preferred to play quietly by himself. Unfortunately, this wasn't something we took too seriously because that person gave us about a million other parenting "tips" in the same sitting. Later, another friend (which we did listen to because he was about to graduate with a degree in behavioral science or something) told us that our son couldn't possibly have autism because he would look us directly in the eyes (sometimes) when we spoke to him and "autistic people never do that".
So, even though I put everything I could into parenting and my child was very academically advanced, I thought his behavior problems were my fault—that I was a bad mother. Why would God trust me with one kid, let alone three? The fact that my son didn't know how to hold a conversation (instead of ranting about his latest obsession) and would flap his hands up and down as he constantly bounced when excited, was terrified of swimming/bathing, heights, having his mouth/teeth/ears touched, changing his clothes (especially his socks), having his nails trimmed, haircuts, loud noises, and any fruit/veggies other than fresh apples or canned green beans, and so much more... This was all my fault. As was the fact that when he was scared, he would clam up and couldn't think or talk, or how, on really bad days, I literally had to drag or carry him into the school office as he sobbed and wailed—where a staff member would physically restrain him until I was gone (after-which time, he would eventually calm down and be fine the rest of the school day. This went on for several grades). Rewards and bribery wouldn't work. Threats made everything worse.

In first grade, due to their zero tolerance policy, he was suspended when he tried help a girl get a leaf off of her clothes that had gotten stuck there at recess. He didn't know how to tell her it was there or what he was doing. It was bothering him, he thought, so it must have been bothering her too. All the teacher heard was that the girl had been "touched" somewhere inappropriately and our son, seeing he was in trouble and not understanding why, wouldn't talk.

The teacher and office staff assumed he was being belligerent by not answering their questions (he literally wouldn't speak a word to them) and told us to come get him. Distraught, I rushed to the school and started trying to figure out what really happened. I wasn't a complete idiot thinking my kid could never do anything wrong, but the behavior he was being accused of really didn't sound anything like him.

The principal let me borrow her office as I spent over an hour trying to calm him down and getting him to tell me what happened, in his own way. Dragging it out of him included having him draw diagrams, a seating chart, etc. It was absolutely exhausting, but at the end of it, the principal said that she believed us (even though she couldn't lift the suspension) and asked if we'd ever had him tested for autism.

The testing process was eye opening for me. Instead of testing him alone, since he was so young, the therapist asked me to participate. As I answered her questions, there were so many things that were brought up that I'd never thought of before (like sensory issues and self-awareness). Not only that, but most of the questions that I answered for him, I ended up adding a mental check-mark for my own self.

I'd never considered that I might have some type of disorder, I'd always just been weird. I was already being treated for depression and anxiety, so I spoke to my therapist about it. She told me that she'd had her suspicions that I was on the autism spectrum, but that, at my age, testing was pretty pointless. Besides, I was pretty well adjusted and high functioning enough that most people wouldn't notice anything was off and it wasn't affecting my life too much anymore.

Fast forward several years: My oldest is in seventh grade now. Last year, he completed sixth grade without any special accommodations. This was huge for us because he'd had an aide working part-time with him to help with things like staying on task, test taking, and, for a few years, even reminding him to eat (he would get so anxious about missing recess, despite wearing a watch and being able to tell time, that he would skip lunch). And he did it all in a Spanish dual immersion program. He still has some struggles, but we're so proud of how far he's come!

Over the past few years, our youngest son has developed some major behavioral issues. Once again, I took it as just bad parenting on my part. I knew what autism looked like, I saw it everyday in myself and my oldest, and this kid was so much more outgoing and adventurous that when my best friend mentioned getting him tested, I said it couldn't be autism.

What I used to think Autism looked like. Image source
This article helped me see Autism more realistically. We all have areas that will be higher or lower functioning than another.

 This is what an average person might look like.  Image source
The image above represents what the average person might look like in these areas. This is how autism is normally portrayed:

How autism is normally portrayed  Image source
That's usually not the case, not for my sons, and especially not for me. We all have our own areas of strength and weakness. Years of work have made my social awareness go from nothing to a lot closer to average, for example.

 What autism in one individual might look like.  Image source

Autism looks different in each person. After all, our individual brains do function differently. 

What autism in another person might look like.  Image source

That article and these diagrams made me more open to the possibility that my youngest might have autism, and my friend kept nudging me.

My seven (now eight) year old's behavior was getting exponentially worse. It's been heartbreaking and downright scary. When he gets upset, he goes into a rage where the is absolutely no reasoning with him. If he gets more upset, he starts hitting (either himself or us), runs away, hides, screams that he hates us and wishes he'd never been born or that we don't love him.

Me and my youngest
When he's calm, he's one of the snuggliest boys you'll ever meet—clingy even, so, saying that we didn't love him or saying that he wanted to kill himself was very unexpected and distressing. The first time he said it, I knew it was over. we'd done all we could on our own and we needed professional help.

It seemed like anything could set him off, but we finally figured out that it seems to be any sort of change in expectation. It doesn't seem to matter if it's something as small as his sister dishing up her dinner before him or something big like a rainy day ruining outdoor plans, the extreme reaction is the same. There have been other symptoms as well, but, next to the worse we've seen, they've been very low priority.

After months of therapy and long hours of testing, we finally got a diagnosis. Our youngest has a pervasive developmental disorder/autism, an anxiety disorder, ADHD combined, and a communication disorder. It makes sense. The theory is that since he's unable to communicate well when he's upset and not being able to express it appropriately, and feeling like no one understands him, can set him into a rage. This really makes sense because the times I am able to calm him down is usually when I talk to him about how he's feeling, letting him know I understand that he's upset, why he's upset, and how we can fix the problem. It's not really as simple as that (it usually involves a lot of repetition, snuggles, and some quiet alone time) but having this diagnosis helps.

I wrote all of this more than a month ago but was too emotional to go back and read it or add pictures, so it's just now being posted. There is so much more to our story, but this is what I can share for now.

The other day, my oldest asked me more about autism. We talked about how his brain works differently than most of his friends. He's noticed that many things like math and science come more easily to him but that he has trouble with other things that they don't. Autism just means he is more talented in some areas and will need to work harder in other things.

We just got approved to start ABA Therapy. (Yes, I had to look up what it is too.) We're super excited to see what we can accomplish with some help!

I know there are so many other parents out there going through the similar things. Please know that you're not bad parents. We all have challenges, struggles, strengths, and weaknesses. None of us are meant to handle all this alone. Even parents of "normal" children need help and guidance. If you've been blessed with a special needs child (yes, I do mean blessed!), remember that God knows what he's doing. While it's difficult, the love and joy make it all worthwhile. I wouldn't trade my kids for anything.

If you believe your child may have special needs, please look into getting some help! Here are a few resources that you can look into. If you know of anything else that may help, please comment below.

Autism Speaks has a great resource guide, tool kits, and even a lets you do a simple online screening test.

Headstart was a lifesaver for us! We didn't know about it until our other two were already in school, but it helped our youngest a LOT.

F.E.A.T. (Northern California, but also has great general resources in their Document Library, etc.)

Utah County's Stride Program, through Wasatch Mental Health, was an amazing program for our kids! Combining school and parental participation, it's a thirteen week program that helps kids with behavioral and social issues. If you live in Utah and qualify for the program, this is a MUST.

Emma's Worry Clouds by Annabella Hagen, LCSW, RPT-S, should be in every family's library. It teaches kids and parents about anxiety and coping techniques in a cute, imaginative, and fun way. Anxiety has been a huge struggle for me and my family (both for those of us with autism and those without), so when I heard about this book, I knew it was going to be a must read!
Transforming the Difficult Child by Howard Glasser puts a refreshing spin on both parenting and teaching and reveals new techniques and strategies that create thoroughly positive behaviors. I can't tell you how many times the instructors at STRIDE told us to read this book! They said that most of their curriculum was based on this book's approach to parenting and teaching.
The Entitlement Trap by Richard and Linda Eyre is another that came to me highly recommended by the STRIDE program. It teaches how to raise responsible children in an age of instant gratification.

by Temple Grandin  When people mention books about autism, they Temple Grandin's name usually comes up, and for good reason! :)
In this unprecedented book, Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges in Thinking in Pictures is the document of an extraordinary human being, one who, in gracefully and lucidly bridging the gulf between her condition and our own, sheds light on the riddle of our common identity.
Look me in the Eye by John Elder Robison, a "darkly funny memoir" of a man's experiences living with autism. 
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