Monday, October 17, 2011
As we have talked about before, our little Rose was having some problems. She was 3 1/2 years old now and while she had always been a little more solemn, shy, and reserved, now she was having huge issues with separation anxiety as well as any forms of socialization.
From the beginning, my husband with Asperger's has said "she's got it". Like it's some 6th sense or something that he just knows she's an Aspie as well. I don't know if I believe that is possible, but it is true that we see many similar traits and behaviors similar to that in our oldest son with Asperger's.
It is interesting that before 3 1/2, she talked, she played, although never to others she didn't know. She talked and played with us. The only time others would hear her talk was when she would sing song to herself somewhere. Rose tends to just ramble on and on to herself at play, but it isn't talking, it's singing. She's always been singing what she wants to say. Everything is a song. At least she was talking even if it was in song.
Yes, she didn't really ever respond to others. She wouldn't look at other people or hardly ever smile, but she knew how. When she did show emotion it was very copied. She would smile if we smiled or show a surprised face if we did or looked mad if we did. We weren't too worried, we just continued to observe.
However, when summer came and all of the sudden she shut down, we began to worry. For 3 months she would not go to anyone else. While she used to go to a church class, now she was terrified of the people and environments that she had always known. She screamed in terror, she cried at any little thing that frustrated her. She stopped talking. She wouldn't go to family members. Something wasn't right.
We tried many things but finally decided to see if she needed some sort of an early intervention program. We agreed to having her evaluated through the school district at a local preschool program. They were to evaluate her in 2 ways; 1st in communication (which I don't think she had a problem with speech or vocabulary---she could talk, she just wouldn't talk or initiate her own thoughts and words), and 2nd in socialization skills (This is where I thought she had most issues as she would only play with kids over a year younger than her if any at all.)
The preschool wanted to evaluate her over a 30 day period. So we took her to preschool 2 days a week for a little over a month. Right away we were amazed as she began opening up to us again. She was talking again and finally after a summer long of not going to church class, she could go on her own again. She began feeling more comfortable around neighbors she knew and grandparents without the screaming fits. It was wonderful, however, we still noticed the same issues in socialization.
When we would pick her up from school she was always playing alone lining up all the play food in the kitchen. All that time I never once saw her interact with another child or playing with another child. While when she first began preschool the teachers would ask her something like, "what would you like to do?" and she would respond only with "yes", now she was actually talking to her teachers.
By the time evaluation time came to a close, I know that the teachers and staff probably thought we were crazy because she seemed perfectly normal to them. I felt stupid, yet we still knew there was something different about her.
The team sat down with us and went over there findings. First the speech therapist told us that her vocabulary was very high and had no communication problems with speech. We again stated that we knew she didn't have speech and language problems, it wasn't that she couldn't talk, but that she wouldn't talk.
Then, when they explained her socialization, they said they didn't see any problems because she played and took part in the different activities. I asked about how I only saw her playing alone, and they said that was normal because she always played with the play food in the kitchen everyday and there were mostly boys in the class who wouldn't be interested in playing over there. My husband told me, "Don't you think that is not normal for a child to play with the exact same thing every day the same way and never with another child?" But the school didn't seem to think so.
They didn't mark the box for greeting, saying hello, or saying goodbye. I tried to point this out to them that it made sense to me because with Asperger's my husband and my son don't do that, unless we specifically instruct them to. They responded and said, "No, she would say goodbye if we asked her to. So, she can do that." And then they checked off the box. So funny to us, because we are both thinking, this is the point. It's not that she can't talk, or do things with others, or say hello, or goodbye, or smile, or look at you, it's just that she doesn't do them on her own. She has to be instructed. That is what is different. But they didn't see it that way.
One last thing, they commented on how "thoughtful" she was because they would ask her a question and they said she would take a while before she answered because to them she was "going over all the possibilities in her head and making sure she said the right answers." My husband laughed at this talking to me later because he recognized that right away as the processing delay that comes with him and our son with Asperger's. I suppose it is sort of being "thoughtful" but not in the same meaning as these teachers defined.
So, in the end, they said she did not qualify for anything. Not that we thought she needed all sorts of special help or anything, but it's just so interesting that their ways of evaluating kids seem to miss all the signs of Asperger's Syndrome. I figure that is why a child can go undiagnosed for so long. This same preschool had evaluated our oldest son at age 4 and told us there was nothing wrong with him because he was so smart and his vocabulary was sky high.
I don't think people understand what Asperger's is. It seems they are more concerned with not being able to talk or communicate by words and vocabulary more than the problem of not knowing how to communicate. Everything must be instructed. Sure, Rose will talk and respond more when prompted, but it is always through promptings. She will go by another child if instructed, she'll hand a toy to another if asked, she'll copy what a teacher is doing, but she doesn't have that social interaction that a typical almost 4 year old would have.
I am grateful to the preschool and we plan to have her continue in their program so that hopefully she can gain more experience with a group interaction, but I honestly don't see it changing all these traits of Asperger's. Who knows. She may or may not have it. It doesn't change how we feel about her. It wouldn't change how we act with her. We know what works, and when we have to give her extra help, or how to quickly calm her down before she has these little meltdowns over the smallest of frustrations. It kind of just makes my husband and I laugh and wonder how it is that any young kid is ever diagnosed with high functioning autism. We'll continue to watch her grow and develop. But my husband believes that someday there will be an "I told you so".