But Wait....There's More

Miss T's speech and language problems have always been her major defining symptom of her ataxic cp. After diagnoses at the age of two we were referred on to a specialist provider for cp. The services they could offer because of the "f" word (funding) were haphazard to say the least. Because of this we also sought support from a private speechie who has been our biggest and best advocate from the professional side of things and I will always be indebted to her for her knowledge and empowerment she has given us as a family. She is an incredible advocate for those with severe communication impairment. In her rooms she has a sign that is a quote by someone I can not remember that says "Just because you can not talk doesn't mean you have nothing to say".

Back to the cp specialist provider. The speechie from the team we were under wanted to do an assessment on Miss T when she was 4. At this stage miss T was still really struggling with her expressive speech. The assessment took four weeks in one hour sessions. They were gruelling as an adult to sit and watch let alone being a child with hypotonia and cp having to sit there and physically do it. I don't know many four year olds without physical issues that could stay focused for this period of time on something so boring but Miss T tried really hard and did her best. When the assessment was completed and correlated the speechie from specialist provider sat down with me to give me the results. What she said floored me. She said based on the results as a four year old that she would be illiterate, would never read for enjoyment, would never be able to hold down a job or live independently because of her speech and language problems. Devastated is too small a word for how I felt. How could my daughter who has no cognitive impairment possibly go through life without the necessary skills to communicate? She even told me that the only enjoyment she would get was from watching TV! (Miss T wouldn't care if we didn't have a TV, she watches less than an hour a week.) After the speechie gave me the results she said that they would no longer be able to support her therapy because of funding. Huge steps backwards of us. I just couldn't get my head around how hard life would be for her if she couldn't read or write especially as a person myself I love to read.

After I got over the shock of what she said and talked to our private speechie and took a long hard look at Miss T and who I felt she was. I knew in myself that she would have much more richness in her life than a life stuck in front of a television. I decided than that it was time to balk at the predictions. Honestly at four that is such a huge call to make. Miss T deserved to go forward whether a speechie with lack of insight thought so or not. I would love to take Miss T back to her now. She is the best in her class with sight words as she has almost of photographic memory for words. Reminds me of why mothers have instincts.

At the moment, along with Miss T's private speechie, we are exploring the possibility that she has an auditory processing disorder. I wouldn't surprise me to be honest. She does find following directions difficult and has difficulty working in a noisy environment. In some sense I am sad that it is another issue but in other ways I am accepting that this is her path, that the damage is already there and all I can do for her now is give her the best intervention that she needs at the time. Although I dislike labels, government departments love them and sometimes it may be a way to get what she needs. It gives a name for her problems in class, that she is not being badly behaved when she looses concentration but that she doesn't have the ability to process and differentiate the sounds that she is hearing. Maybe this step back will let us make leaps and bounds forward.