Thursday, April 2, 2009

Today is an important day!

Today is Autism Awareness Day. The month of April is Autism Awareness Month. So, for the rest of this month I am going to focus the subject matter of my posts to education and insight into the world of autism. I will still post updates on our very interesting life (ha ha) but will try to provide some information too.

With that said, I am not sure where to begin. Our story is not all that different from so many other's. We had a totally typical baby. We never thought, ever that there would be something wrong. Slowly, we started to realize that our baby was just not developing the language and social skills his peers were. We also were noticing that the language he once had was disappearing.

I have written before about how it was my sister who finally said something to us. I had been walking around for months feeling like something was not right but no one would really agree with me. I don't blame them... they were probably scared to do so. Amiee was very brave in encouraging us to have him evaluated. She did mention autism but again, we NEVER thought he had autism. After all, he was not like Dustin Hoffman in the Rainman movie.

In the beginning (3 years ago), the only things I truly remember are feelings of being totally overwhelmed and lots of crying. As we met with speech people, psychologist, neurologist, social workers.... it felt very surreal. Everyone had a different thought and opinion on what was going on. Everyone spoke so casually. They do this everyday but yet their words would cut me so deep and be so painful. I know they were only doing their jobs but I just wanted to scream..... this is MY BABY!

Carson on the other hand had no idea any of this was going on. He was just okay to have people try to play with him or talk to him. At that time he was very much in his own world and oblivious to any of these evaluations. He was also only just over two at the time.

I am so very grateful to those people though. They started Carson on the path to recovery. They empowered us as parents to know what to "do". They were also very resistant to diagnosing him with anything other than a developmental delay. They wanted to give him time to see what he could do. That was really important to us. Of course, we were petrified of the label of autism but we also wanted to make sure Carson did not get labeled and then just placed is a group without being challenged. Boy, did we have a lot to learn.

As the years have gone by, we have heard it all - Autism, Tourettes, ADHD, ODD, OCD. Jay and I are not overly concerned by labels. Carson is a complex kid. He is not your standard, out of the box, autism kid. That is why so many have differed on what exactly we should do. One thing everyone agreed on though, is that he was on the autism spectrum. All these other disorders are just characteristics of - Autism.

As you know, Jay and I have tried to educate ourselves as much as possible. We still have SO much to learn. After much research we decided to try the Biomedical approach suggested by the Autism Research Institute. The kids on this protocol seemed to be recovering and making gains in language and behavior.

This was not a light decision. It is a HUGE commitment but one I can say has been a miracle for our child. The biomedical approach is about healing his body so that his mind can grow and catch up. So many kids on the spectrum also have digestion issues, yeast sensitivities, parasites. ETC. Carson has them all too.

We have seen first hand how this approach is helping our child. His diet along with his therapies have helped him recover in so many ways. Just 18 months ago, he have VERY little language. He could not answer a yes or no question. He would not respond to his name. He did not care for affection or attention. He was happy to live in his secluded world.

Today he is an amazing child. He has a great deal of language, loves to imagine and play and lives for your attention. As we have worked on healing his body, these things have come through. We still have a way to go. Professionals estimate that with higher functioning kids, autism robs them of 2 developmental years. So, in essence, Carson is five but really developmentally he is three. This is not seen as a big deal when he is 30 but might act like at 28 year old but when you are five that two year delay is very significant.

In the big picture, we are so very blessed. I know too many parents who have children that are not responding to the treatments. Too many kids that don't have ANY language. There is no explanation as to why it works for some and not others. It all depends on how severely your child is impacted by the disorder. I believe we got lucky. Carson is high functioning and we also, did something about it very early on.

I can't speak enough about early intervention. People - if you child is not talking by the age of 2, just have them evaluated. It does NOT mean they have autism but language is so very important for everything else that is going to come. If they are already behind, it will make everything else that much harder for them.

Anyway, you can probably see that I am very passionate about this subject. I will write more later but for now, if you are interested, Dr. Google can help you find more info.

Love you all - Em

1 comment:

Journey To Eden said...

Hi! Just want to make sure you know that the Discovery Health channel is starting a new show about autism. I believe it is on Mondays at 8:00. It looks really good.

Carson has come soooo far... it's amazing. He is a funny, sweet, bright, beautiful boy.