Like the beginning to all great stories, I feel that I should begin this blog with this epic statement to begin all statements. But I’m not going to do that. I’m going to jump right in. Bear with me on this entry. It will be a long one because it’s the beginning of a journey–our journey with autism.
I started this blog to detail our journey with Squeaker, our son, who just happens to have been diagnosed with autism. I won’t refer to him as “our autistic son” and I’ll do my best (promise) to bring the positive parts of his life into the picture. It’s a pretty big picture, so that should be easy, right?
Honestly, I’ve been inspired to begin this blog by a documentary we viewed just a couple days ago. What was the documentary, you ask? Well, I’ll tell you because if you’re reading this and you’re still interested, you’ve probably got someone in your life who also just happens to have been diagnosed with autism and I thought the documentary had a wonderful message.
In Loving Lampposts (the documentary aforementioned), explores two questions that have been asked about autism: Is it a devastating sickness to be cured or a variation of the human brain (a different way to be human)? This blog isn’t about the documentary, so I won’t go into great detail about it, but you can read about it on the website for the movie. I urge you to explore it.
Our particular journey with discovering autism began a couple of years ago, when Squeaker was two and half years old and having behavior problems in daycare. Squeaker has always been a sweet, well-disciplined child with a lot of energy. When he started hitting other kids and the teachers at daycare, and then started hitting us (his father and I) at home, I got worried. In addition to the hitting, we were experiencing some pretty bad tantrums when he wasn’t getting his way. He was banging his head on things, which really concerned me, and I had started holding him when he got upset to the point where he was banging his head. We’ve always used time-outs as a way to handle discipline problems, and they weren’t effective at this point. I took him to the Children’s Developmental Services Agency (CDSA) in our town to be evaluated upon the recommendation of our pediatrician.
Now I’m sure some of you are asking yourselves, “Well, isn’t that typical behavior for a two and half-year old child?” Well, according to the CDSA, it was, in fact, typical behavior. We were given the following recommendations for his behavior:
Provide consistent discipline and research resources you may elect to adopt. One good source of many is a book by Dr. Dobson entitled Dare to Discipline or a program called “Love and Logic.” Your local library or book store can help you locate a copy.
Try to anticipate problems before they happen so you can have a more stress-free life. Say “no” to him as few times as possible and focus on only 2-3 goals at one time. Keep discipline simple and make sure he is clear on your expectations of his behavior. Provide very clear limits and let him know what will happen if he crosses those. Consistency is key!
I quoted that information directly from his evaluation. I should say that, in addition to finding out that I had a typical child behavior-wise, I also found out that he had some pretty significant delays at this time, making him eligible for services in the Infant-Toddler Program. Had I never taken him to be evaluated, I would never have known he had delays in his fine motor, cognitive, and self-help skills.
My husband and I are text-book parents. Up to this point, I had already been consistently checking what milestones Squeaker was supposed to be meeting at his age. I don’t know how I didn’t realize he was behind, but I guess I had been so focused on language, I didn’t see anything else. I’ll get more into language later, because I learned later that he also had delays there. Anyway, if we’re told to read a book and it’s supposed to help us with our child, we read it. They had also mentioned a book called 1-2-3 Magic at the evaluation. I didn’t care for Dare to Discipline because it suggested spanking as one method, and I don’t believe in spanking. We did use 1-2-3 Magic (and still do) to address the behavior issues, and after some time, we saw a decrease, especially in aggressive behaviors.
We moved in the middle of all this. Once we moved, I got in touch with the nearby CDSA and began again. More evaluations followed, including Psychological, Occupational, and then eventually, Speech. I have to say that I kept pushing and pushing as we went through this process. If something didn’t seem right, I didn’t let it go. I totally believed that early intervention could make a big difference. I think my husband believed, in the early stages, that I was worrying over nothing. But he also wanted the best for our child, so he pushed with me.
We found out that Squeaker had significant Speech delays (apraxia, expressive, and receptive language delays) several months after the initial evaluation. He was 3 years old. I continued, during all this, to express concern about Squeaker’s tantrums, which at this point included him throwing himself down on the floor, hitting himself in the face, and banging his head on the floor. It made sense when they told me he was probably tantruming because he wasn’t able to express himself in words where people could understand. We began making him use phrases to ask for what he wanted instead of throwing fits or pointing. It was rough, but we stuck to it, and Squeaker followed the script. He also began speech therapy through the school system. We truly believed that once his language developed, the tantrums would stop.
Squeaker’s language has come a long way in the past year and a half. If I have to say anything about my child, it’s that he’s got a PHENOMENAL memory. He’s learned specific phrases for specific circumstances to get what he wants. He can identify things like no one’s business. Seriously. What 4 and a half-year old do you know that can tell you what an excavator is? He floors us sometimes with his knowledge. He still has difficulties expressing himself in words when he’s upset. He still struggles to answer “why,” “when”, and “how” questions. His language is very scripted. He recently decided to potty-train himself (and believe me, that was a journey in itself). I’m proud of how far he’s come.
Yes, he’s come a long way. But we do still see some pretty incredible meltdowns. They can be scary. He has bruises on his arms from biting himself. Scratches on his face and legs (self-inflicted). He still throws himself on the floor. He bangs his head on things at times, bangs his fists together, slams his legs down on the floor. He also doesn’t really have much interest in socializing with other kids. The ones he does choose to socialize with have the same type of personality as him. They are kids he can make noises with, scream, etc. He’s learned to identify kids who are like him and he gravitates toward them.
On June 14, 2011, he got diagnosed with Autism Spectrum Disorder. I just want to say, the people at TEACCH are so nice, and they did a great job getting Squeaker to do things for them. They truly enjoyed working with him. He’s a joy. But I do think they expected more emotion from us when they told us the diagnosis. But you know what? They didn’t tell us anything about our child that we didn’t already know. At this point in the game, my husband, who initially thought was crazy for suggesting our child might have autism, had finally come around to the idea. We were not shocked. We were not dismayed. We left that building with simply this: the knowledge that we were right all along.
Yes, our child has autism. But he’s still our child. He’s still Squeaker. And Squeaker is an incredibly energetic child with an infectious laughter and a beautiful heart. He is so, so smart. He has a great memory. And we love him. I began this blog with love. I won’t deny that we have some really hard days. But there is always a glimmer…a beautiful moment…in every day. I’ll write about it all with the goal being to embrace my child for who he is. All of him.
Originally posted 2011-08-08 16:37:00.