Driving Jessica's Taxi: After the parade has gone by

Thursday, April 03, 2008

After the parade has gone by

As I watched all the coverage CNN gave to Autism yesterday, I was amazed. I don't think I've ever seen them cover any subject (apart from the election) quit so well. Really, it was amazing. I'm sure many people, who had no idea about Autism learned allot. That is wonderful. But today I feel like someone left to pick up the paper and spilled popcorn after the parade has past by. I just changed Jessica's stinky diaper. She may be more understood by more people (that is very good) but she is still sick. The world may take notice of our kids one time per year, but we fight this battle every day. I have to be honest, I wish she was not Autistic. I wish I could say I did not understand this need so very well! But I do understand it. I simply need to gather my courage up, and just keep walking. I know (sadly) I am not alone. Million’s of other families all around this world are also scraping the gum off the side walk today. We serve our kids. It was nice the world stopped and took notice. None of us are doing this for the attention any way. It is a labor of love. I truly love my girl!

2 comments:

Momtofour said...: Amy, I always feel the same way whenever it is Autism Awareness Day. I think about how others can watch a program, read an article, and think about autism and how hard it is on families just for THAT day, or sometimes even just for that hour. Then they go to bed, wake up the next morning and go back to their "normal" life, and we are still living autism. I sometimes don't watch the programs or read the articles, because somehow they just frustrate me... people who call themselves "experts" trying to talk about what we live EVERY SINGLE DAY. Anyway, I am so happy about your blog, and Jessica gives me SO much hope for my Abby who is also nonverbal. We just got an AAC device for her and we are in the beginning stages of its use, so I really hope it can be a tool for Abby to let us know what is in her head. I know there is so much in her head!
hugs
Angela; 3:31 AM
Suz said...: Amy,

I am a newer reader of your blog and this was my "first" Autism Awareness Day. My 7 year old, adopted at 5.5, has been diagnosed on the sprectrum. We are struggling with English and school and daily living. Therapy is helping some, and reading about those going before us helps too. Thanks for writing.

Suzanne; 11:14 PM

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pot holes and pits

There are pot holes and there are pits. To this point I had never really fallen into a pit. I had no idea how to handle what was happening, no idea at all. When you run over a pot hole, it shakes you up a little. Some times the pot hole is so large, it can even cause some car damage. That would require a day or so in the shop. But a pit is different. You fall into a dark hole, and when you get up to inspect for damage, you often fall off the ledge even further down. If fact one of the scariest parts about falling into a pit is being in the dark, and never knowing when and if you have really hit the bottom. When Jessica was 18 months old she had 5 immunization shots in one day. I remember asking the nurse if it was a problem that Jessica was sick, and taking antibiotics for an ear infection. I should have used my best instincts and said "no" not today. But they were the medical professionals. I was just a first time mom. What could go wrong? But with in 4 days things went terribly wrong. It has be wrong for 19 years now. Jessica lost her voice. I thought we would just spend some time in the shop, get the car repaired and be back on our way. Instead of getting on the road, I have had the challenge of learning to live my life inside this hole...and I know now I may never be allowed to recover from that fall.