Sunday, July 25, 2010

Not Otherwise Specified...... and that means?

In the last year since both of our boys were diagnosed with PDD-NOS we have tried to figure out exactly what that is. What does it mean when your child carries the label Not Otherwise Specified? Well I have come to find out that the professionals are just as baffled as we are. In short what I can tell you is that my two boys share many irregularities similar to Autism but not all, really not most. I have often wondered if it wouldn't have been easier if their disability had been more severe. Then I realize how ridiculous that sounds and ask whether MY brain has malfunctioned. Of course it wouldn't be better if they were more severe. Granted it would have been more obvious to me and all those around me that something more was going on. It may have caused the ball to get rolling sooner with testing and intervention. But my children's futures are promising when so many children with more severe diagnosis will have a much harder time.

So there is a point in here. Today a sweet lady came up to talk to me about Micah. He was sitting in the women's auxiliary class at our church with me because he just couldn't handle the children's class today. We talked about how she used to work as an aid for children with Autism and Aspergers. She commented that it must be so great to have such a high functioning child. I agreed it was great that they functioned so well. She said that if you didn't know some of the peculiarities of the diagnosis you would not know that Micah had anything wrong with him. I just sadly smiled and said "And there is the root of all of my problems." As a parent where both my children are "abnormal" I didn't know the difference. All the parenting advice I was given strictly forbade comparing my child with another. "Every child is individual and learns and grows at their own pace. Give them time and everything will be fine." That's a good rule in general but in the case of Special needs..... not so good.  You keep waiting for your child to catch up and then there is a huge gap because you waited too long. It is hard to have a child on the edge of normalcy. While people watch my children I see them tilt their heads and squint going "Wait, did he just do that?" or "hmm something's a little odd about that one." You never know what to expect from them. Some days they function great, practically perfect. The next it is total meltdown and regression. I spend most of my time explaining behavior to people we come in contact with. Most of the time during the day I am disciplining and I find it hard to recall praising the boys at all. Then I read books that tell me my child thinks differently and I feel guilt over my expectations and punishments when he JUST DOESN'T GET IT! (or does he?)

As my family and I travel down this road together I just hope that forgiveness abounds. I honestly don't know what I am doing. But I am doing something and that is going to have to be enough. So yes I am thrilled that my children are so high functioning. I feel blessed everyday.......... after I eat chocolate and take 5 Ibuprofen.


LeMira said...

Today I got, "He's so cute. . ." at something that in a year won't be cute at all, and I know he'll do something similar. Hang in there, Nat. . .today it took 20 minutes and force to get Jackson to remember to put his pajamas on. . . really? Really? YES!!!

Monica said...

Amen on the chocolate and ibuprofen. Right there with ya! :)

F said...

I would second the amen on the chocolate and ibuprofen - some of the best parenting advice I've come across :)