It's funny, in a strange sort of way. I remember the exact minute that Little Miss M had her first seizure. I remember every detail, the diagnosis was clean cut, there were medical tests and I could fit things into boxes. I remember when she was diagnosed with sleep apnea and asthma, I could give you the dates and the scientific reasoning behind it. However, the diagnosis of Autism was much more grey for us.
When Little Miss M was fourteen months old, we noticed her development falling behind her peers. We had her evaluated by the Birth to Three system and she qualified for services. As she approached her second birthday, we did the MCHAT and she threw up more then three red flags, which meant she was more likely to have Autism. So, we had her observed, we had her evaluated and tested and at two years old we were told "No Autism". They said she was developmentally delayed. She underwent the standard ADOS testing at two years of age, and again they said "No Autism". When we were still struggling daily at age five, we endured the 18-months of the wait list to have her development evaluated again. We did not know what to think, but we held on to that token of "it's not Autism".
Shocked doesn't seem to adequately explain the feeling we had when Little Miss M was diagnosed at five years old. We had no idea what this meant for Little Miss M or for our family. We were sad, mad and scared. The emotions were so raw and life didn't want to pause for us to catch up. I don't remember much of that first year after the diagnosis and I think I've colored a lot my memories with happiness and flowers - but I know where we are now.
Autism is a scary word because it doesn't mean just one thing. It is such a large spectrum and doesn't really describe the person, their abilities or their struggles. I think the word Autism is scary to so many people because there is no one example of what it means. In the over three years since her diagnosis, we have come to accept that it is a part of her make-up, but it is not her.
We found by embracing the difficulties: the social communication problems, the intense need for structure and schedule, the extreme emotional responses, and so much more - we embraced our daughter and we started to learn who she was inside. She is loving, she is kind, everything she does she does with her whole heart. Little Miss M loves theater, acting, singing, dancing, creating stories, riding rides, being with her family and planning parties. We try to help her structure her world so that she can be successful. We have our moments when her inability to cope in certain situations leads to us missing activities - but instead of being defeated, we look at how long she was able to cope.
We'd love to hear your stories of how Autism has affected your life, especially during this Autism Awareness month, please share in the comments below.
Amanda is feeling glass-half-full today and hopes this feeling continues!