Wednesday, September 19, 2007

Learning of Johnny's Autism

I guess Oprah had a show yesterday about famous Mom's of children with Autism (I did not see it). It now seems to be popping up all over on the news and online. It's caused me to think about Johnny and how very far he has come in the last several years. I'm very grateful that he is high functioning and also grateful for how much he is changing and growing.

The signs:
I tend to lean towards believing from research and experience that there really is something to the belief that autism is possibly brought on by immunization shots (specifically several given at once). When Johnny was 18 months old we had just moved to TX and taken him to a new doctor that told us he was behind on some shots and gave him several at one time. It was around that time that we started to see concerning things in Johnny's behavior. He rarely spoke in the first 4 years of his life, but instead he would meow like a cat. He got really good at it and we had many conversations when we had visitors in our home when we had to insist that we really did not have a cat and it was just our son (he sounded so good people took a while to believe us). When we would try and take him to class at church he would flip out. He would cling to us and when we put him in class he would go wild. He would scream, hit, kick, and bang at the door. When he would give up on that he would crawl under the table and refuse to come out until we got there. We thought he was just being "difficult", "strong willed", and "rebellious" so continued to consistently put him in class thinking he would get over it, but he continued to get worse. As my health got worse and we had to have baby sitters and child care while Jim was at work Johnny really lost control. He would have what we call "meltdowns" and would be sitting in one place playing nicely one minute and the next scream, kicking, and flailing around. One day I picked him up to hear that he had one of these meltdowns and was hitting and kicking at his baby sitter (who was also one of my closest friends). I left her house and just cried and cried. We tried every punishment imaginable with him... what more could we possibly do? The more we would punish him the worse he would get. Jim and I both noticed that there was something wrong but couldn't quite put in to words what was going on. It did seem as if Johnny couldn't help himself when he would snap. Even as we recognized it we also wondered if we were just giving an excuse for poor parenting. From the time he was 18 months until he was 4 years old were some very difficult years. When he turned 4 his meltdowns began to disappear. He would still get very upset if taken in to a social situation. We attended a weekly home bible study. One night Jim was carrying Johnny inside the house (filled with people we had known a long time) and Johnny saw all the people and panicked. He grabbed the door and clung to it while screaming and crying. We could see it in his eyes... he was really terrified! This and many things like it went on over and over again. We were at a loss for what to do or what we were doing wrong and could not get a doctor to help us. As he got older and his symptoms mellowed out a bit we were able to see more clearly that something really was just not the same for him as other kids. One week I took him to his Sunday class and came back to find him curled up in a ball (at 6 years old) in a corner of the room shaking and crying out of fear. I decided then and there that I would never again put him in a social situation so intimidating to him. I know... what took me so long, right? There are so many other things... he has trouble looking anyone in the eyes, he is constantly fidgeting and moving, makes unusual noises and sound effects almost non-stop, has trouble following or holding a conversation or remembering directions given to him... the list could get quite long.

The "news"-- I am sure all parents react differently to the news that their child has autism or any other disabilities. However, Jim and I had been sure that something was up for a very long time. Even if the doctors did not recognize it as a problem in the short time they spent with him, we always knew something was not right. Johnny was 6 (and many of his symptoms were much milder) when a doctor finally caught on. She was doing a really thorough exam for our adoption home studies. We told her (just like every other doctor) about our concerns about Johnny and she listened. She did some tests with him. Then she turned to us with a very sweet and sympathetic smile and gently "broke" the news to us that she believes our son has autism. This is the point she expected us to fall apart and we instead smiled, nodded our heads in agreement, and asked "How can we get him help?" We could tell that it was not the reaction she expected but it was better then the "Well DUH" we were saying in our heads. :)

The changes: We have made some major decisions about how to handle problems Johnny faces and life has become so much better for us all! Home schooling him has been FANTASTIC for him and we can't even begin to imagine putting him in a public school situation and expecting him to learn. We no longer put him in situations where he is scared or intimidated by his surroundings and if we accidentally do it we immediately take him out of that situation. Instead of harsh punishment for everything he does we punish only clearly rebellious actions and not the ones that we know he does without making a conscious decision to do so. Recognizing his needs and struggles has been so helpful in his feeling safe and allowing him to be himself. He no longer has any of the meltdowns and is about the sweetest, most loving, and even very obedient child you could ask for!

What I would do differently- If I could do it all over again I would not have trusted so much in the doctors. I would have listened to all my instincts screaming at me that I was missing something. I wish I would not have forced him in to situations that terrified him or punished him for things that he could not help... I just did not know at the time.

Johnny is such a joy in our life and a really wonderful gift from God. While he may always have things he struggles with (and who doesn't?) he is also very talented, smart, and kind. I believe with all my heart that God has a very special and exciting purpose for Johnny's life and I look forward to seeing it play out. It's an honor to be his Mom!


funspirit said...

Wow, Angela your story really touched me. I know a little of what you are going through. I was in Big Brothers, Big Sisters in Florida. The younger brother of the girl I was involved with had autism and it was very disconcerting at first.

He did many of the things you mentioned - especially sound effects. I believe he was 8 when I stopped seeing them and he had yet to speak in a full sentence. Most of his communication was grunts, sounds and pointing.

I'm sorry you couldn't find the help you needed. It is so confusing and bewildering to deal with this behavior. I found that this boy was very sweet and loving. Although he only liked to be touched when it was HIS idea, he would often come over and touch my arm and later, even sit in my lap for a hug.

I'm glad to hear things have improved for you and your family. May God bless you all.

Amy said...

Hi Angela, thanks for sharing about Johnny. We have waited two years for our son to come home and he turns 10 on Sunday. 10 is the "magic age" that they have to get a bunch of immunizations in order to get a visa. I really prayed about this, that God would spare him that, but it doesn't look like it will be so. I don't want him to be sick when we travel. I don't want him to get a bunch of stuff he doesn't need. We signed a form trying to keep from having to get the shots, but I'm not sure if the wording on it will keep him from having to get them. We've been in MOI almost 4 months. I asked our chiropractor about the immunizations and he said when babies get all those vaccinations at once it is an assault to their systems. As they get older, it's not such a shock to get one at a time. I hate to think of J getting all those things at one time but I guess I have to trust God that he will be okay. Maybe he's old enough that it won't be so bad. Anyway, thanks for sharing your story about Johnny.