Tuesday, March 30, 2010

From Signs of Love to Words.... Our Journey Part 6

It was now mid March and I was working at about 18 hours a day to find not only the reason Joshua wasn't speaking, but a way to fix it. I know that it may seem kind of weird that I fixated so much on the "why" he didn't speak, and if you have never actually had a person on your life that has a speech issue then you don't know that with the different speech impediments comes different therapies and different ways of handling the "problem." If he was just slow that was a great answer in my books, but I knew he wasn't, and I knew that the answer wasn't just autism.

I have mentioned it before that people had used the word autistic on Joshua and I think that without understanding why I came off strong the wrong opinion might be reached about how I feel about it. I will admit that prior to any knowledge of autism I, like many others, had a preconceived idea of what autism was. I watched a movie when I was young that had this smart little boy sitting in the corner of a room rocking back and forth while his parents sat in another room behind a glass mirror (like the ones in the interrogation rooms) discussing how he should be placed in a home. With movies like that out there of course it is something that sends chills up your spine when you hear it, especially about your baby. However after the first few times that I had someone make the autism comment I really looked into it, and met other parents that had children that were diagnosed as "being on the autism spectrum," truly unless you had knowledge of the situation you would never have guessed that they had it.

Now the reason that I was so I guess you could say forceful with Dr.X (the pediatrician) was because I at this point had almost on a daily basis someone tell me that my son was probably autistic. I remember one girl made the comment that I was simply in denial, and that I needed to just accept it. She had knowledge of children because she was a daycare worker and thus had the capacity to diagnose him. I had many friends who read the book Jenny McCarthy wrote about her son and used it as a map on how to deal with my "situation." Please know that I am not saying one bad word about Jenny, but she had her own war path that she and her son were on, and Joshua and I were on a totally different path... we just had the same style flash light. It was this big elephant in the room with anyone who thought they knew Joshua, if they didn't tell me in person I could hear the whispers as they left my house, "she really needs to come to grasp with what is happening with her son, if it were me I would..." I would have cried had I not been so angry, I wasn't oblivious, I had professionals in the house almost on a daily basis, I was so happy that a majority of them were named Michelle, it really helped. At one point we have over 15 professionals reviewing Joshua and the only consistency that they all had (other than Dr. X) was that this boy indeed did not have autism.

There are so many tests that can be done to come to this conclusion, but the main one that I kept pointing out was that Joshua had ONE symptom which is a sign of autism, and that was that he did not speak. He was perfect in every way, but could not say a word, or even more than that anything other than "ahhhahhahh ahhahhhaha."

At this point we had ruled out quite a few different possible reasons as to why he didn't speak. It felt as though we were untangling a bundle of chain necklaces, you need to sit there and focus, and slowly look at each strand, and ever so carefully you pull one through a loop and you feel like you either took a step forward, or maybe you made it worse. Sometimes you need to walk away and stop looking at it because you are going cross eyed... and well I WAS! I needed out. I was breaking and so was Joshua... we needed some rest. So that's what we did on day 402 we rested.

1 comment:

  1. My daughter is 3 1/2 with only a few words that come very few and far between. I too am fighting the autism label. I know my daughter is not autistic. She has apraxia. Every day I feel like I am fighting off people who just want to label her and not find out why she is the way she is. The people who bother to get to know her agree - her private speech therapist, her pediatrician.

    I kept on taking her back to the pediatrician because I swore that there was something medically wrong with her besides the apraxia. I have gone at least four times begging them to test her for different things. Two weeks ago I found out that she has a thyroid problem. I also found an article by Raphael Kellman, MD that relates thyroid problems that mirror signs of autism.

    My five year old daughter did not speak until she was 3 1/2. They wanted to label her autistic too. (She has apraxia also) Now, she is doing great in a regular kindergarten class and still gets speech therapy.

    If I would have just said that my daughter is autistic I would have never found the thyroid problem. The school keeps pressuring me because autistic kids get all kinds of free services. They tell me you can't diagnose apraxia until they begin to talk (?@#?). I tell them that I will not label my child with something that she dosn't have just for free services. Shame on them.

    Jenny's book helped a lot for me to actually rule out autism. I love her. We are all "Mother Warriors" for our children :)