The visit to the doctor that no parent wants to have

by beagooddad on August 25, 2006

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Beagoodmom took Pookie to a specialist yesterday. In March, he was labeled with PDD-NOS by the school district which basically meant he does not communicate or socialize well. He has some signs of autism but seems pretty close to being normal. And, the school district will allow him to get special education resources.

The specialist confirmed what we had expected for quite a while now. Pookie has autism. If Pookie continues getting the special help that he will need, he will live a normal life.

I can not think of too many things that are scarier for a parent to deal with. Autism is a scary word. Unlike a lot of challenges kids can go through, autism represents a huge variance in possibilities for quality of life and at 3 years old we have no idea where Pookie will fit on that scale.

The good news is that we have seen a ton of verbal improvement over the last few weeks. Pookie has both immediate and delayed echolalia. I can not begin to express the frustration of raising a kid who talks non-stop, all day, but never says anything to you. He is extremely affectionate, extremely happy, extremely interactive with Beagoodmom and me and even with his sister a little bit these days, and extremely entertaining to himself, his sister and us.

The hardest part for me with dealing with echolalia is listening to him in bed at night chanting the same lines of his favorite shows, books, and songs over and over and over again. Kids with echolalia do not just repeat words, they repeat cadence, pitch and everything. Hearing him sing-song a few sentences a couple hundred times in an hour as he tries to fall asleep is very hard to deal with. We are torn between knowing that the echolalia serves a function both with settling his mind and learning to speak and needing to teach him that there are times that you have to be quiet. How can you teach him to be quiet at certain times without discouraging him from talking altogether? How can you let him talk loudly in bed with his sister sleeping five feet away in the same room?

Recently, he started advancing to a new stage of echolalia. He is saying catch phrases that make sense for the situation. Last night after reading an Arthur story book before bed, he started singing the theme song to the TV show. He is also starting to ask for things with limited prompts.

We used to ask a question and then tell him the answer in the manner he should say it. Like this. “Do you want milk? I want milk.” And then we would repeat “I want milk” until he said it. Now, we can just say, “I…” and he will say “want milk” or whatever it is he wants.

He is starting to make some real associations that sometimes catch us off guard. Last night, we were playing a game where we point at things and he tells us what they are. Pointing at me got a “daddy”, pointing at mom got a “mommy”, pointing at Pookie got a “boy.” We never really knew that he really understood the difference between boys and girls.
He is starting to imaginitively play and starting to play with his sister. They like to play a game where they load a toy garbage truck with all the furniture in the doll house, push it to a different room and dump the contents. I can’t remember what he says when he dumps the truck, but something along the lines of, “Uh oh. There’s goes the garbage.” My new personal game to play with Pookie is one that Geetle has loved for a while. Now, Pookie thinks it is hysterical when I steal his nose and eat it. He always makes me put his nose back on.
Seeing all of these things and hearing the doctor tell us that he will be able to lead a normal life, makes us very excited about his future. But, getting the official diagnosis also reminds us that we will have to be constantly on our toes to drag him into our world constantly and everyday. If we let him, he would wander off and play with his own toys for hours at a time.

So, we have that to work with. Which is fine. I can deal with that. I was all geared up and ready to go last night when I had a realization. We don’t just have two kids. We have twins. Geetle is typically developing and constantly talking. As we go through the process with Pookie, we are also going to have to remember to continue to bring her into the mix. I don’t mean we need to pay attention to her, too. That’s a given. I mean we need to constantly involve her with everything that we are doing with Pookie. She already is starting to realize that he is different than she is. She will sometimes say that he “talks like a baby” and she does not seem to understand why he is not potty trained yet. She also is starting to do certain things that he does just because she knows he gets attention for them. She talks better than I do most of the time, but at the table, she’ll say things like “Want milk” because she knows that it works for Pookie. We are going to have to stay on our toes to involve her with everything we are teaching Pookie so that she does not feel left out, but also make sure that she realizes that her standards for certain things are different than Pookie’s.

By the way, that does not mean the bar will always be set higher for her than him. Right now, Pookie can point to any upper or lower case letter and tell you what it is. He can point to any color, most shapes, any number up to twenty and knows them immediately. Geetle is nowhere near that yet. Pookie can do summersaults. Geetle tries, but is not very good yet. There are a lot of things that we hold Pookie to a higher stander than Geetle and we have to make sure that we do not expect her to do something just because he can.

That’s a lot of information. My personal brain dump, I guess. Over the coming months, I plan on doing some real articles on autism, echolalia, working with the schools, etc., but for now, I just needed to get that off my chest.

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