The “A” Word

The “A” Word

That’s what I called it. Every time Brenda would bring it up and I didn’t want to discuss it, I would instead refer to it as “the A word”. After all I didn’t want to even hear the word unless it was our reality, which it was not.

The truth is, I had already made peace with it several months ago. We both knew a lot about the subject, and for a long time knew that Max needed some extra attention. It was even more noticeable since he’s a twin and there is a constant comparison, like it or not.

We (mostly Brenda) did a lot of reading and research on his symptoms and behaviors because obviously there was something not quite right, and it always came down to “sensory issues”. But that’s a big umbrella covering many different disorders.

Max is coming up on 3 years old and has been in therapy for well over a year now. While there have been some huge gains, he has hit a plateau of sorts. He’s not regressing, but we’re also not seeing the kinds of improvements we were getting used to. Because of this change, Brenda recently pushed to have a Medical Evaluation done on Max. It’s the one test that we knew would give us some solid information. That test took place on October 20th (just under 2 weeks ago) at Masonic Medial Center in Chicago.

A Medical Evaluation is a 1-2 hour test (really it’s more of playtime with the child and interview questions with mom and dad) that a group of doctors conduct with you and your child present. Each doctor has a different background and specialty. After they are satisfied with what they have learned from the session (as well as reviewing all previous medical and therapy information) they go off into their own private room and discuss your child for 15-30 minutes. When they all return, the deliver their assessment of the situation – the conclusion that they have all come to agree on.

When they came back, they said it was in fact “the A word” – Autism.

While I had made my peace with it long ago, and went through a kind of mourning, it was still a punch in the gut to hear and know that it was true. It was hard to not get teared up right then and there. We asked questions and talked for another 30 minutes or so and each physician chimed in with his or her own bit of information. Autism is not a single diagnosis, but a spectrum. If there’s good news to take away, it’s that he’s on the low end, or mild end of the spectrum. So it could be worse for sure.

The other bit of good news would be that we finally have a definitive diagnose, which means we now have a single focus to push forward with. This will make better use of the time we have to help him and allow us to move forward in the right direction faster, instead of being more scatter shot about all of the possible treatments.

The first 5 years, especially the first 2-3, are very important for this condition, and it’s a blessing that we had him in therapy as soon as we did. The odd thing is that we started the therapy because of Andrew, and later realized that Max needed it too (Andrew has recently exited the program having no more needs to address). We will also have access to more therapies that, up until school age, are covered, at least in part, but the state.

Another positive indication is that the same group of doctors wants to see him again in a year to see if the treatments and changes are helping him, and to be sure he’s progressing at a good rate. They said that while it does not happen often, it is possible that when he comes back he will no longer be considered Autistic. While we’re not counting on that, it is good news.

Because we started with him so young, and because he’s on the mild end of the spectrum, there’s a good chance that by the time he starts school at age 5 he will be no different than any other child. While there is no guarantee of this, the outlook is very good. There are plenty of examples of children seemingly reversing their diagnosis when it was treated at a young age.

What does this all mean for the here and now? What has really changed? Not much.

He’s the same little boy he always was that we loved from before he was born. We’ve always focused on his needs and symptoms and always tried to do what was best for him. The main difference is that we have a diagnosis for it now, and a singular focus on how to help him.

So Max is still Max. He smiles, he makes us laugh, he’s goofy and he laughs for no apparent reason. And we love him for who he is.

He’s also a very strong headed, stubborn boy that wants what he wants when he wants it and is not shy about telling you he’s unhappy with you. He throws tantrums, hits you when he’s mad, doesn’t like taking naps, is a very picky eater and can make the day as long as a week when he’s in a bad mood. And again, we love him for who he is.

So while he may have a label now, it’s just that – a label. When you see him just treat him like any other little boy, and he will love you back and leave you smiling.

Tags: Autism, Max