We here at Mending Autism would like you to meet someone very special to us, Dr. Jerry’s wife, David’s Mom, Donna Kartzinel. She’s been the parent of an autistic child, Joshua, who is now 15 years old, and has three other sons. She’s going to be a periodic guest here at Mending Autism to provide a mom’s perspective.
What’s being a parent of an older child with autism like?
Life as the mom of a teenage son with autism, type 1 diabetes, thyroid disease, and Scheuermann’s disease (which causes a young person to have what is essentially a hunchback) can be full of wonderful moments and great challenges. The sweet, kind spirit and innocence of my son is refreshing. I love it when Jerry reaches to touch me and Josh says “what are you doing?” Josh loves to tickle and kiss our arms as we give him insulin injections, yet other times he’ll say “ouch” just to see how we react and then laugh at us. He listens to everything we say so we have to be very careful when we mention Disney, Legoland, or anything else that he loves because he will bring it up later. He loves to wolf whistle when he likes something.
What kind of challenges do you face as the mom of an autistic young adult?
Challenges of course are not so pleasant. When you have a small child with special needs many people are sympathetic and more patient, or at least tolerant of some of the stranger behaviors. As our children grow and get taller but fall further behind their peers intellectually, they stand out more, especially if they happen to have Scheuermann’s disease too! Most people just stare at us as we walk by them at the store or at the mall. Thankfully Josh doesn’t notice. He is so comfortable in his own skin that he’ll break out in dance or song at the store. I do try to keep his impromptu music sessions to the minimum or at least a little quiet but it brings him such joy, so why not let him dance and sing!
How do people treat you differently?
The other thing I notice besides the strange looks when we go out in public is that family and friends stop asking how you are doing. People don’t seem to realize that it gets harder with a teen since you can’t just leave them at home with a therapist or a sibling and run to the store or find a nice teen to watch them. You and your spouse can no longer go out for dinner alone at the drop of a hat. Other people also don’t consider what your daily life is like, depending on how much your child can do. For me this includes helping my son tie his shoes, fixing all his meals, giving his insulin shots, helping with his hygiene like shampooing hair, putting on deodorant, eventually shaving, etc. You begin to realize that as your friends talk about “empty nest” you most likely won’t ever get to that stage. It hurts at times, but it doesn’t mean you can’t be happy with your life or that you love your child any less. It does mean for greater planning, trying to find people, friends or family, who can watch your teenager and provide the care they need, for us that includes testing blood and giving insulin. My oldest son (who’s not a fan of needles) had to learn how to do blood sugar and give insulin.
There’s good news though too! As one mom said to me last week that she finally got to the point that she was going to enjoy her son for who he is now and he is a really cool teenager! No they aren’t perfect but who is. They are fun; loving teens that still have their ups and downs but why not enjoy them. Each of our teens is so different and we all have different struggles but we can all love and enjoy time with them.
Every once in a while, we get a special blessing too. Last week at church, we had a lovely woman, who didn’t know anyone in our family, come up and give my son a hug and said, “He’s always smiling and so joyful.” Our special needs son had blessed someone, and then they turned around and blessed us too. In a world where most people won’t even touch our special needs children, having her come up and hug him meant so much to me and to our entire family.
What kind of challenges do you anticipate as you get older and plan for retirement and beyond?
Knowing there can be challenges ahead, we need to be smart about our resources and planning. Some of our kids will be able to live pretty much on their own if not completely. However some of our kids are a little less self sufficient and will either stay at home or will need an awesome group home community to live in, have friends, and work depending on their capabilities.