This post was originally published on April 22, 2010.
Today I am pondering our journey with a child who is termed Special Needs. This is the first post of a series where I will be sharing our personal journey. Some of the things I will share I have never shared before and they are close to my heart. I hope that by sharing our experience and journey that this can help someone else.
I had just finished purchasing a couple of new books from Amazon, when Chandler asked me what I was doing. I commented that I had just bought a couple of new books on Asperger’s Syndrome and they would be delivered on Monday. He countered with, “What?! Why?! I don’t have that.”
After assuring him once again that he does indeed have Asperger’s, I was left to wonder why he continually thinks he doesn’t have it. He doesn’t see himself as a child with special needs. I think some of it is because we try really hard to help him feel as normal as possible.
When Chandler was first born, I remember looking at him and thinking he was special. And I realize that every parent feels this about their children when they are born, but I mean something different. When I looked at him, I saw a child with characteristics of a Down Syndrome baby. He had that look through his eyes and I wondered why no one else could see it. I still look at those pictures and see that, although he doesn’t look that way now. I think that God was using that opportunity to prepare me for the special needs that my child would have. God knew that I needed spiritual preparation to minister to his special child in my care.
When Chandler was just two years old, I began to suspect he had autistic tendencies. He would line up his little cars in a row and would freak out if we dared to move them. But he had so many things that didn’t fit autism that I began to consider that he might have some autistic characteristics or be mildly autistic. He was obsessive about certain things, particularly the order of his things. But he also liked to be cuddled on his own terms. He didn’t like strangers or loud noises. But he was also exceptionally bright and could work out things that would stop the normal child. One instance of this was our VCR. We purchased one of those locks for the front of the machine because Chandler would put his cars in the tape slot. He figured out how to work that in short order and would put his cars in it and then replace the lock so we wouldn’t know right away. I still remember finding the remnants of a peanut butter sandwich in our VCR. The only reason I knew something was amiss was because the lock was placed in the slot upside-down.
When Chandler was 4 years old, he asked me if he could have something for Christmas that would help him to learn to read. He loved books. So we purchased the Hooked on Phonics program for him. He took charge and had gone through the program in a couple of months. I mean the entire program. And he did most of it on his own.
It was then that I began to consider that perhaps Chandler had a “touch” of autism and it was just enough that it wired his brain a little differently so he was fairly smart. You see, I knew in my mother’s heart that something was still different about my child.
I sent Chandler to Kindergarten reading at an end of 2nd grade reading level. His teacher was amazed. However, she also began to pick up on things that weren’t quite right. He was having trouble socially with the other kids in the class. He didn’t understand social norms or boundaries. He wouldn’t come in from the playground when the rest of the children did. He would wander alone as an outsider looking in. He also had issues with motor skills and his speech needed a little work.
His teacher was wonderful and worked with him and helped us to fight for Chandler’s rights. His classroom was actually very special as the school he was attending was starting a pilot program for a multi-age classroom for the school district. The thought was that the kids could all work at their own level. He was in a K-1 class and actually had this teacher for two years. (After that, he entered a 2nd-4th grade class and had the same teachers there as well.)
One thing that was really special about his K-1 class was that the kids from the special needs department came in and worked with the class as well. All of the kids in the class became accustomed to kids with special needs and were loving and tolerant. Chandler finally made some friends. But then we had a new issue to work through. He became obsessive about one of the girls in the class and had to sit next to her and play with her every day. If it was any different, he would have a melt down. We had a lot of work to do to help him learn to cope and learn that it was ok for his friend to be with someone else.
We spent a lot of time talking with the school psychologist. We took him for counseling elsewhere. No one wanted to give a solid diagnosis because then he would be labeled. I wanted a label desperately. We heard that he had everything from high anxiety to OCD. I constantly read and researched. I asked about Asperger’s because it all fit together. The response I got was that it was possible, but they didn’t want to label him. It would go with him on his permanent school record forever and he would be treated differently and not be taught in the mainstream school. Even though he was working above his peers, he wouldn’t be allowed to progress any longer.
So I pulled him home for school and we labeled him. It was the best decision we ever made. It has been a challenge to learn how to teach him the way that he needs. It is also a challenge to keep up with his brain at times. He is a challenge.
But I am grateful to God for showing me how to be Chandler’s mom. And I am grateful for the gift that Chandler is. Special needs? I think they are truly mine, as God knew I needed the spiritual journey that having a child in the Autism Spectrum brings. And for that I thank God every day.