I am a mother of a child with several disabilities. I happen to have rare disorders myself, so I keep people laughing by saying we could have a different diagnosis for every month of the year.
We just finished Autism Awareness Month. After being involved in our local community for twelve years with the first Autism Support Group and various other groups, I must admit it gets tiring. Maybe it's because my child is getting older and everything about autism is wearing me down. I don't have that initial vigor I did when he was first diagnosed. Maybe it's because I am just tired of autism. Social media floods us with companies that offer autism t-shirts, shoes, lanyards, autism this and that.
Then you have the good meaning friends and family members that offer you books, opinions and unsolicited advice to help keep you aware, just in case you forgot!
The rare moments I find during these "awareness" months are the ones that come from nowhere and can be surprising.
I had a dear childhood friend text me, out of the blue, asking where an adult could possibly get tested or screened for high-functioning autism, as she thought her older son and she might have it.
While waiting in a doctor's office, my son had a meltdown. The people look scared and confused. I assured them everything was ok by saying, "It's just autism and this is what it looks like." Then, a young mom started asking me questions regarding her child. There are moments we not only become more aware but moments we can use to help educate.
It's almost like a responsibility to help spread the awareness wherever you go, however you may do it. Even while your son is lying down in the middle of a doctor's office wearing a Viking hat and a Harry Potter scarf!
Connecting with other parents is one of the best ways to share information and help yours and other families.
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care