Laugh with me- Insight of an Asperger's mom

My oldest son AJ was recently diagnosed with Asperger’s Syndrome, a disorder on the spectrum of autism but high functioning and more of a focus on being socially challenged. The news came, believe it or not, as a relief.

AJ was threatening to leave this world since pregnancy, with periods of almost no heart rate for the last three months to seizures at four weeks old. As time passed, he had a slight delay of about one month on every benchmark of development. His head grew much larger than average, in the 105^th percentile, which with the seizures cause us many trips to Children’s Hospital in Boston and many minutes of waiting; him being drugged and wheeled away on a stretcher to begin exam after exam. There is no sight on earth like a nine month old taken away from you on a stretcher. We were left behind, hugging, crying and praying.

They examined him for disorders that could be fatal. They examined his blood in tests that required so many vials, I do not know how he had any blood left. All we learned was what they could possibly rule out.

So now, at four-years-old, AJ is seizure free and his body has grown into his large cranium. We learned from some recent exams that he tests above average in vocabulary, knowing his numbers and all the months of the year. His memory is astounding and he can recall things and places in detail from a single day two years ago. But he can not always answer a simple question. Most importantly, he doesn’t seem to care. A few more rounds of tests and we are told he scores on the high end of the scale for Asperger’s Syndrome, meaning that more than half those who have it are at a lower level of functioning then he is.

AJ has all the words to say, but he doesn’t always fully get the question. He also doesn’t always care you are asking it. If he wants to talk about his Thomas trains instead, the subject can veer crazily in that direction.

“Where are the coats kept in your classroom?” I could ask. And the response could either be correctly, “In our cubbies, mine is next to Cody’s.” Or, it could send me on a journey into his favorite topics, “My coat is new and Dylan got my old one because I grew very big and we had to get a new one. And we found it at the circle store (Target) and it is red and I like it. Cody’s is blue and the other Cody has a black one. There are two Cody’s. Cody W. is the nice Cody….He had a birthday and I am going to have a birthday and I will be five and maybe I will get another Thomas train.”

So like many parents, when I would get this never ending train of information-minus the answer to my question- I would think it was just a toddler being well, a toddler. I mean have you talked with a toddler? They are crazy fun little beings. And I guess it is very toddler-like, but it is just more often than that of a child without Asperger’s Syndrome. It is perhaps 50 percent of the time you ask a question.

AJ has also developed a studder and a stammer which intensifies if he is excited or frustrated. It is frustrating for me, I am going to admit, because now when he is going wildly off topic it also takes five times as long to get a single sentence out. He also has it in his mind that he must start every sentence with the name of who he is addressing. So, talkative AJ begins a constant line of communication with “M,m,m,m,m,m,mommy” at the start of every sentence. This translates to about one million times per day.

I feel for him, really I do, but by the end of a 14 hour day with him (he does not nap) I am exhausted by sounds and words and, well everything. I too become socially challenged. Not to mention I have a two and half-year old making demands and on one of my exceptional days my eldest child, in her 20s, seems to need me to be the sounding board as she vents about her day of work and what she will do with her life. If I am truly blessed my other daughter, 20, will call to tell me her car is in need of costly repair or she broke up with her boyfriend or both. I am ashamed to admit, but sometimes AJ getting stuck and saying his drawn out version of mommy at the start of every sentence in a string of endless sentences that don’t necessarily connect or have any purpose…well it makes me crazy.

How crazy? Crazy enough that I have threatened to go eat dinner up in my bedroom just to have some silence. I don’t want dinner conversation, (see, socially challenged) I just want everyone to stop talking to me and to eat a meal with food being wiped on my shirt by the little person next to me. I of course, never would actually hide in my bedroom to eat because I really do love them all and hiding from your children is a level of dysfunction I am not ready to visit.

And I always remember how grateful I am to have them all…especially AJ, whose health worried us down to our core for so long. I have been asked, if you knew he would have some of these issues would you still have had him? Really? I remember being at Dartmouth Hitchcock, seven months pregnant, hooked up to a monitor 24-7 and hearing that heartbeat slow to a stop twice per day. You yourself stop breathing as you begin to pray…please, come back. Come. Back. So, let me say, after you have felt what you feel in those moments you realize how deeply you want them…no matter what their challenges may be.