Blog #67~ Dear Abby, Down syndrome and Autism Style…
Advice Columnist, Dear Abby 🙂
It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome. That was it! This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!
Ten years later we would meet Chris in person at the National Down Syndrome Congress convention. (For more information: http:// www. ndsccenter.org)
My older son, Hank with Chris Burke at the NDSC Convention……
There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids. Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors. I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.
Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh. No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child. The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens. Topics last week were varied. One mom needed help on how to explain and guide her daughter about getting her period. I added a comment about a great book that tackles puberty and body privacy issues called: “Taking Care of Myself,” by Mary Wrobel. There were dozens of helpful tips from other parents who had daughters that had dealt with this issue. Another parent had just given birth to a baby who has Down syndrome. I was moved by all the support given to this new mom. Here are just a few of the many offered to her:
- “Go home and bond and love your baby”
- “Congratulations you have been blessed.”
- “Get regular checkups and a heart echogram to rule out heart defects.”
- “Low muscle tone may make it difficult to nurse your child but don’t give up.”
- “Focus on the baby, not the Down syndrome.”
- “Go to www.noahsdad.com it has great information presented positively.”
- “Check out www.futureofdowns.com it has a lot of good information.”
It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents. For a long time I was alone. I pulled away from the Down syndrome support groups because I didn’t fit in. Nick didn’t progress like the kids who just had Down syndrome. After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org. Within NADS, there is a group is called “More than just Down syndrome.” I found a new home here. We have a unique bond because these parents get it!
We’ve have been through it all with Nick. Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights. But some things have become easier as he has matured into an adult. Just yesterday we gave him the best, most cooperative haircut ever! Miracles do happen. 🙂
As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop. Bless these warrior parents for getting up and fighting the good fight! That’s what is in my noggin this week!