It has been there all along. We've known it, whether we admitted it (even to ourselves) or not. Some people are bold enough to ask, most are not. I'm sure many people have wondered. But I've never really answered the question for anyone, at least not with complete honesty.
Why did we have
Sawyer formally evaluated for his autism and not Xander? They are identical twins, after all. And they both clearly have developmental delays when compared to your average (almost) four-year old.
For those who have wondered, I will tell you what I told the IEP committee last week at our annual meeting. It was the first time I have ever answered the question out loud and with as much honesty as I could.
The answer is actually rather simple. I simply could not do it again.
When we first began suspecting an issue with the twins, somewhere around their second birthday, it was a difficult time. So much of you wants to believe that you are mistaken, that it is just the fact that they are boys and twins, as so many suggested, and that they would eventually catch up. But, the longer the delays last and the more pronounced they become, that's when you start to do some reading and when reality starts to settle in. It's real, it's lifelong and there is very little that's understood, much less known, about the causes, the treatments or the eventual outcomes. It's scary.
At that time, when you looked at the twins, there was a big difference. The easiest way to explain it is that if you were going through any of the standard autism checklists, Sawyer would hit on almost every single red flag. Lack of eye contact. Lack of engagement with others. Not answering to his own name. Staring at random objects for long periods of time. Lining items up instead of playing with them. Yes, to all of those, and to many other things as well. He very clearly had it, and it was severely impacting his development.
But with Xander, he only hit on some of the things, and the things that he hit on were typically to a much lesser degree. Lack of engagement with others. Yes, but mostly with strangers. Rigid play. Yes, but there was still actual play. Limited eye contact. Yes, but again, mostly with strangers.
Autism a spectrum disorder, meaning there are many different levels of severity. Xander probably had it in some form, but it was not nearly as pronounced or obvious. He was, and remains, on the edges of the spectrum. I'm sure on some level we simply hoped he might grow out of some of his behaviors, that his behaviors were more an identical twin imitating his brother rather than a pervasive problem.
But beyond the different levels of severity, Sawyer eventually scared us into action. He had always been withdrawn from others, but a few months after his second birthday we started to see a significant regression. The words had already slowly faded. The OCD tendencies were getting more pronounced. But what finally got to us was that he started pulling away from even me, the one person he had always interacted with and who he had always clung to in just about any situation. He was spending more time staring but not really seeing, less time smiling or enjoying anything, and simply withdrawing from everything and everyone.
His need was simply greater.
That's when we started the state program for assessment and therapy based on our pediatrician's recommendation. Both boys were assessed, and began receiving therapy. Sawyer was on track to receive what I had wanted to gain from the state program all along, a clinical evaluation at the statewide center for autism. One of the therapists thought Xander should receive it as well, but the other two disagreed. We were still on the fence. Our most pressing concern was still stopping Sawyer's regression, so we went ahead with his evaluation and didn't push for one for Xander at that time.
And for those of you who have never had to take a child through a serious clinical evaluation, count yourselves lucky. It was, far and away, the single worst thing I have ever had to do in my life. Ever.
It was neither the people or the place, both were absolutely amazing, but rather the process itself. The months leading up to it and following it, the actual day itself. Nearly six hours, being examined, questioned, watched, tested in as many ways as you can possibly imagine. Sometimes two or three clinicians were simultaneously asking questions, observing and interacting with us as we moved from different exam and play rooms. You are constantly being asked to recall the most minute details of development from birth to nearly three years of age, being asked similar questions over and over to check for consistency, being asked to rate skill and developmental abilities as compared with a typically developing child when clearly your frame of reference is going to be a bit off, all the while knowing the end result is going to be the same. Because I knew. I knew the diagnosis was going to come, knew it many months before the evaluation actually took place and knew it before they began going over the results that afternoon. It was there all along.
And in some ways it was good to have it confirmed. I was not crazy, all those red flags were actually there (you'd be surprised how many well-meaning people tried to tell me that I was crazy, that my children were perfectly fine and normal and what was wrong with me anyway). In other ways it was awful. It was a label. It would, of course, not change at all the way I felt about my son. But it would change how others might perceive him, or limit him or even count him out all together. I hated that part of it. I will always hate that part of it.
The
diagnosis came only a few months before the boys aged out of the state program. Even if I had been inclined, which I was not because we were still coming to terms with one diagnosis, Xander would not have been able to be evaluated through that program. Our insurance, or mostly our out-of-pocket deductible, would have had to pay for it. And we were also in the middle of starting the transition to the local school system, where I knew that they could also perform a similar evaluation. Even better, as far as I was concerned, they could do it through a combination of school and home settings and we would not have to endure another evaluation at the statewide center. It would be easier for Xander, easier for me.
Basically, we waited because we knew that it wasn't absolutely necessary at that time. Based on his speech delay alone, Xander qualified for the local early start preschool services just like Sawyer did. Both were going to be entering the program and both had IEPs developed that included instruction and therapy to meet their current needs. We knew that he could be evaluated later and that it would be a (somewhat) easier process. Part of me was not ready to face it, and part of me simply knew that it was not going to change any of his services at this point so why put either of us through it. That's what I told myself, anyway.
And that brings us to now. The question was asked and answered because the time has finally come. Grant money has been received and there is a pilot program for students with autism being developed at the boys school for next school year, but only those with the official diagnosis are going to be a part of it. His team of teachers and therapists at school asked the question, and I finally answered it. It was time.
And now we're moving forward. Xander is going to be clinically evaluated through the school system for autism in the coming months. And whether he gets the diagnosis or not (some of us are still not sure that he will), it is there. It's always been there. It's much harder to see unless you know what you are looking for, but it's definitely there. I will be neither shocked nor surprised to hear the words. I will not like them, because I know now even more than I did the last time I heard them about what it truly means to have autism, but they will not be quite so hard to hear.
I also know it will not change anything. It certainly will not change who he is or how much he is loved. My son will still be the same sweet, funny, mischievous and lovable little boy he's always been. He will run and jump and laugh and climb, just as he always has. He, too, will find his own way in this world.
It's just another bend in the road on this journey we call life ...
