Guest Author - Bonnie Sayers
The first week of autism awareness for April of 2009 and I am tired of it already. I can honestly write this has nothing to do with the fact that my nonverbal twelve year old is on spring break this week.
It has been a good week so far. Monday we went to dinner at Burger King. Matthew was smiling and happy to see the renovated store, sat in the booth the entire time. The father to another kid on the autism spectrum that was in preschool with Matthew was there. He came over after eating to say hello to both of us. Matthew was pleased to see someone address him by name.
Tuesday we did some grocery shopping followed by the drive through at Mc Donald's. The cashier at the store said hello to Matthew, noticed how bigger he is getting. He stayed with me the entire time in the store. On Wednesday we picked up some items at a drug store before heading to Burger King drive through. As we were exiting the driveway I noticed another Dad of an old classmate of Matthew's from his Elementary School years. We gave the Dad and his daughter a ride home. Matthew was smiling in the back seat with no protest for the fries while we took a detour on our way home to go in the opposite direction.
Another parent whose son went to Kindergarten with Nicholas is stopping by the end of this week for some passes to the Los Angeles Zoo. Just last week another classmate from that Kindergarten class stopped by to see Nicholas. They last saw one another at the graduation from fifth grade.
When we see these families and kids on the spectrum or with other disabilities there is no negative talk about the disability or autism. These are times when we are happy to discuss how our kids are growing up and what their achievements have been.
I have been pleased with the way Matthew has adjusted to Middle School with riding the bus, wearing a uniform, new school campus, new teacher and classmates plus therapists.
For this autismfamily autism awareness is about accepting autism into the community, having knowledge on the spectrum, knowing my child is autistic by seeing the shirt he is wearing with a simple explanation for his behavior. We have a flag banner in the front yard that just says autism awareness, a magnet on the bumper to alert emergency personnel that there is a nonverbal person in the car.
You will see various members of the autism community standing up for autism, running or walking for autism, they might be bouncing for autism or fundraising for some autism organization for autism, many want to get rid of autism and say they are fighting for autism - why not just accept autism and live with autism?
Every year it is the same routine, the organizations are sending out notices to families asking them to donate so they can do more research. Where is the money trail leading?
When will the autism community ever come together standing in unity for services for both children and adults across the board? Not every family has a kid under the age of six on the spectrum. My kids are almost 13 and 14. Most agencies cut off serving kids at the age of twelve.
Why is it that parents refuse to acknowledge the adults living successfully on the autism spectrum? Some speak rudely to others on the spectrum because they don't get the lack of social skills in an adult, yet fight for services so their kid can get training for these same skills they put down in adults.
I have seen this countless times over the years in online communities and on social media sites. I am shocked at the way a parent can toss aside the feelings of a young adult with autism and not see that this could be their own child in ten or fifteen years.
I never understood parents mourning of what could have been for their kid when their child is still part of the family or how tragic the diagnosis is. I think if you have lived with a disability in your family since childhood as a sibling or other relative you have a different outlook on the situation and do not see it as dire. At least this is how it has been for me.
I want people in the autism community and the general public to refrain from being rude to the rest of the families who are busy living their lives and not fighting for anything.
Speak for yourselves if you are not happy with your child or their being autistic, but please refrain from publicly shaming those who accepted autism and are trying to take each day as it comes. We are fine, thank you.