Laugh with me- Insight of an Asperger's mom

AJ at 9 months old.
AJ at 9 months old.

Laugh with me: Patience 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 105th 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.

Comments 4 comments

Ellen 5 years ago

Barb, your honesty is breath-taking and, in my opinion, necessary. I hope other Moms (whether of Asperger's diagnosed children or not) will read this and feel comfortable speaking openly. Such a gift! Namasté.


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mommysays 5 years ago Author

Thanks Ellen, AJ is an AWESOME little boy and it is important to laugh at the daily craziness...for any parent. Just because we love them and being a parent doesn't mean we are not human and sometimes overwhlemed by the challenges. The strong learn to keep going, laugh at the obserdidty and remember to be grateful. I would not have it any other way.


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abbykorinnelee 5 years ago from Ripon Wisconsin

LOL God you started me off wanting to cry feeling guilty I felt I had it hard when my son was little and I couldn't imagine it ever being like your beginning; then I was muttering to myself that I wish my daughter (just at seven being evaluated for Asperger's) would learn her dang ABC's but ended up laughing so hard because my son with Autism doesn't understand all the Where What When and Why questions...Why...Because and you go for an hour and not get anything else. Or you ask a question and its ...Iron man has the mask, the black one not the red, but spiderman can climb up buildings and Iron man can't...and dad is fighting megatron with bumble bee right?...no not iraq with bumblebee...he at work and...god it can go forever and I just wanted to know where he put my keys...lol...God Bless I love looking at things that frustrate me or did in the past and laugh about them.


Melissa 5 years ago

Barbara, I remember all of this happening and you updating on myspace and facebook. You are truly blessed with 4 wonderful children and an amazing husband. You can't complain. Those little boys of yours though, are the cutest little boys. I only see them a couple of times a year, but they make me smile. So if you ever would like a date night with Adam, let me know, I will come watch the beautiful boys!

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    Me with my crazy bunch of kids...top left Courtney, 20, on my lap Dylan, 2, myself, old, my oldest child Michelle, 23, and on her lap is AJ, 4 years old.
    Me with my crazy bunch of kids...top left Courtney, 20, on my lap Dylan, 2, myself, old, my oldest child Michelle, 23, and on her lap is AJ, 4 years old.
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