Sunday, June 20, 2010

From Few Words to One Kvetchy Kid

I remember when collegeman was little and I had decided to return to work. The only problem was that I had wanted him to talk to me about his day before I would apply for a job. While I knew that most nannies are good people and take their jobs of care seriously there is always that one individual who gives you nightmares. And yes they did play it up on the news but, why take a chance. Why have to put in nanny cams and security programs so you can go and earn a few extra dollars? The truth is that the sojourn into the world of work did not happen, because collegeman did not talk.

Oh he spoke a few words here and there. He could tell you when he was hungry and thirsty. He told me when he had to make potty and he even relayed when he was happy and sad (which we all know that in the world of autism spectrum disorders this is a really good thing). But what he didn’t do was regale you with stories from his day. You know how at first the pediatricians tells you that it is because he is a boy and they talk later. (With HSB they kept telling me that he was a second child so they talk later, and then it was because he was prone to ear infections- he had tubes put in when he was 2 years old)Then they tell you that he is so smart it is really nothing to worry about. You see collegeman was hyperlexic, but hyperlexic with understanding. He could even write before he entered pre-school at 3 years old. He even read Hebrew too. Who knew at that time that hyperlexia was the first indication of autism? Not the developmental pediatrician we were going to. (As I have said before, there is no way that doctor will ever miss a diagnosis of autism ever again in her career. In fact I saw her name listed in a local magazine as one of the top developmental specialists in our area. Told yah, she would know her stuff).

As it turns out it really was a godsend that I never went back to work. I understand that the economy being the way it is and the cost of children, never mind special needs children in today’s world, is financially draining. So I am not not not casting aspersions on those that need to work by any means. I am just saying that I am one of the lucky ones who was able to stay home with my children and ensure that they receive the support and help that they need on a constant basis.

The interesting thing that happened at that time is that we did give collegeman speech therapy. No one happened to tell us that we could have gotten it through the county or the school system at the time, neither the doctor’s office nor the speech therapist. Considering that the majority of pediatricians I have come across don’t even know about early intervention I can’t really blame the doctor but I sure as hell can blame the therapist’s office. They acted like there was really nothing wrong with collegeman apart from his speech delay. I knew they knew something was not right, because looking back on it and knowing what I know now, they were keenly aware that something was truly amiss. They said that they had never had a child who could read and understand the way he could and still not speak. In fact they devised a way for him to learn to speak by using cue cards.

They wrote individual words onto index cards and then rearranged them into sentences so he would learn sentence structure. They also used the cards for him to learn conversation and how to follow directions. They even had me sign a release because they filmed him in sessions for their speech therapy classes. They wanted to show newly minted therapists the innovative techniques they had come up with. Then when the pediatrician said that there was nothing really wrong with collegeman and that everyone was crazy, they told me that I couldn’t bring him back there anymore without a letter from a psychiatrist, so much for their caring voices and concerns. But I bet using the films they made of him to show their teaching methods made them famous in their little circle.

Personally I am tired of the egos that are involved in taking care of special needs children. Yes, I have written on many occasions about the condescension of the professional in dealing with your child (here. here, here) (Yes, I have also written about those that are terrific with your child. Definitely here.) But this was more than that. This was abandonment of a child they knew in the back of their mind that was in trouble in the long run and all they cared about was that the pediatrician didn’t agree with them and that I chose to listen to the doctor. Well howdidoo, who would you listen to? The medical professional who says that everyone is crazy and that your child is brilliant with just some minor issues or the therapists who can’t figure out how to teach him and don’t know what is going on but insist they know better than everyone? You pick. Well we did and they abandoned our child. (Actually they would be the first to abandon collegeman, but unfortunately not the last professional to abandon him. Yes, I keep a running shitlist in my head and I may not remember that therapist’s (or certain teacher’s) name, but you can bet I remember the faces. Just once I would like one of them to run across me on the street in the City and we’ll see what happens).

Anyway, as the story goes, we did finally figure out what was going on with collegeman and we got him all the help that he needed. Talking is not a problem for him right now, well he does have some retrieval and processing issues but for the most part he is quite verbal and doesn’t really know how to shut-up. No, not complaining, not complaining at all.

As I mentioned collegeman had his wisdom teeth out this week. He was not very happy afterwards and did require the attention of his “mommie.” But then again when we are sick, thinking that your mom is going to take care of you really gives us all comfort. Anyway, my mother called the day after his surgery to find out how he was doing. He was lying in my bed watching TiVo and feeling rather sorry for himself at that point. Now not wanting to upset my mother, she lives in Florida, thousands of miles away without the ability to come over to help or hold his hand, I tried to make light of the pain he was in. But collegeman wouldn’t have any of it.

“All right, all right, are you nuts” he yelled, “Give me the phone.” He grabbed the phone out of my hand.

“Grandma, it is just awful. My mouth hurts and it is swollen. I can’t eat anything but mac and cheese, ok that is good, but my mouth still hurts.” He would go quiet for a few minutes as my mother consoled him and relayed to him stories about my wisdom teeth episode. “But grandma…just listen to what they did…” He then regaled his grandmother with the entire story from soup to nuts about his wisdom teeth extraction and how we were taking care of him.

I finally got the phone out of his hand and made him lie down and watch TV. He needed to sit quiet at this point and rest. He reluctantly handed me the phone and turned over and quickly fell asleep. (He was on strong pain medication at the time).

My mother relayed the conversation about how she tried to make him feel better by telling him about my surgery and how I survived and that he would be ok. I told her that he really will be fine and that I couldn’t believe how he just took the phone and started kvetching to her. I know my mother in some small way was thrilled because not seeing the boys very often there is still a wonderful connection between them and that collegeman and HSB know deep in the recesses of their minds that my parents love and adore them, and truly I think that the love and affection is very much returned by the boys.

But what got me choked up was that I started to remember the little boy who couldn’t put two words together until well into his elementary school years. I remembered the little boy who had trouble telling and relaying verbal information. What I saw was a young man who eagerly told a story to his grandparents about issues and problems and the horrible thing that we were putting him through. The days of the word index cue cards are long ago. But they will always be there for me. I guess I will always see the troubled little boy that he was, and be very overwhelmingly overjoyed at the very verbal, albeit kvetchy, young man that he became. Not the dream I had had when collegman was first born, but I'll take it.

Until next time,