When Amy was diagnosed three years ago with ASD (autism spectrum disorder) words such as "high-functioning" were tossed around. It was implied that her autism was mild - not as bad as some. Which is true - it isn't. It was also hinted that she may even one day get to the stage in which her autism diminished or even disappeared. Really?
The heartbreaking reality of having a child with ASD that can hit hard at times is - it's for life. Some aspects of autism become more manageable over time. But other aspects don't seem to change and this really hit me this week.
It was Thursday morning and I was just dropping Amy off to school and on my way to work. The RTLB was there and said we needed to chat - now. It was a twenty minute conversation about some issues the school is experiencing at the moment. I felt as though I was meant to come up with a solution and for years I have done that - all throughout Amy's Kindy years and for almost two years at school. I have been there supporting, suggesting, and contributing with all the specialists that have been on board over the last three years.
But I'm exhausted and running out of ideas. I went to work after that meeting on Thursday and shed tears about Amy and autism being for life. This week it has felt like a life sentence for all of us.
I was under the impression that with early intervention, the school years would be easier. Yet even though we were lucky to have help from the time Amy was three and a half and she has progressed in leaps and bounds in some areas; so many challenges remain. I cannot say that life with a daughter who is six and a half with autism is any easier than what it was when she was three and a half.
Dare I admit that on that Thursday morning that when the tears fell, I just for a couple of minutes wondered what it would be like if Amy didn't have autism. I know parenting is not an easy ride for anyone. But the daily challenges Amy faces are hard on all of us.
There are the beautiful and proud moments. Like when Amy completed her jazz medal test on Tuesday this week. Independent at times, she requested that I not be in the room during her test (even though all the other parents were!). She did well and held it together. But got home and had a huge meltdown.
I have just written a long email to the RTLB with some further suggestions for the school stuff. It's all stuff that I feel they should know by now - repeated information. Earlier this week I rewrote a social story Amy's occupational therapist had written as it had words like"don't" in it which don't work well for a child with autism. These specialists are on board to help and sometimes I wish they could just sweep in and solve things for us. But sometimes even they are stumped and on occasion get it wrong - specialists with years of experience with children with autism.
Mothers Guilt is something I believe that comes with babies are soon as they are born. Mothers Guilt with a child with autism is there all the time for me. When I don't have the answers, I feel as though I have failed Amy. I'm meant to protect and guide her. But sometimes all I can do is manage autism on a day to day basis and hope for the best. I'm never sure what tomorrow will bring.
