April 3, 2007 by Marj Hatzell
While we were at my favorite red-dot-store-that-rhymes-with-Barget this morning, I ventured over to the pharmacy to get the next month’s supply of Bugaboo’s meds. They know me by name and never have to ask. I merely show up and they grab my stuff. That is how often I am there!
Anywho, while there I saw a mom pushing her little guy around in a special stroller. He was in his footy pjs (like my kids!) and had some physical challenges. We chatted a bit while we waited. Her little boys smiled and laughed. He just couldn’t move.
I am guessing he was two-years-old but because of his physical limitations he could be small for his age. But as we left (and ran into them again at the elevator) I have to admit I was nearly in tears just thinking about that little boy. I cannot even imagine what his parents have gone through to this point. He has a feeding tube and mickey and has sensors to make sure he is breathing and his heart keeps beating. He cannot independently move out of that chair. His every need is taken care of by his mother and nurse (who was with them). She had a cart full of Easter stuff, my guess is that she has other children. Four, from the amount of goodies in her cart!
Why did this affect me so? Her child’s condition is fairly obvious. On first sight most people could guess that he had Cerebral Palsy. He may even have been a preemie, due to his small size. I really do not know. Most people know what to expect with a child with CP. Often their brains are intact (average to mildly below average intelligence ) and their bodies cannot move. Sometimes it is more severe. A child with Down’s Syndrome has obvious physical features. Most people know that they have developmental delays and often speech issues. But a child with Autism? Most times they look like everyone else. I do not know if this is a blessing or a curse.
At least with my child no one will have a preconceived notion of what to expect from him. I know that this is debatable, since each child with a disability is different, even within their own diagnoses. People are usually shocked to find out that my children have issues, on first sight. Once they observe their behavior I usually get a knowing glance (the, “It’s-ok, I-have-a disabled-child, too!” look, like this morning) or a pity glance (the “Wow! Sucks-to-be-you!”) or better still, the “Look-of-horror-and-disgust-combined-with-embarrassment-and-wanting-to-shrink-away-and get-their-child-out-of-there-before-they-catch-something-contagious” look. Those of you with children with “issues” (because I hate the word disability, really) know what I am talking about.
The thing is that even though people aren’t going to judge my children right off the bat like some children they also will not be given any allowances. People will assume (and they do!) that they are normal and just spoiled. Or give me dirty looks in the grocery when Bugaboo is shrieking, buzzing, flapping, stimming, etc. I even get little old lady (and some young ladies) scolding me for not using the belt, which he has taken off about fifty times. My only defense is to repeat the grocery mantra, “You need to sit! Sit down! That is unsafe! Sit in the cart! Do not climb out!” and I still have my hands on him the ENTIRE TIME, yet he manages to jump out while I am checking eggs and run laps around the store. The people at TJs know all about us, as they do at the little co-op in town (which isn’t truly a co-op, but I digress). I felt compelled to tell them so they’d be a little more understanding with us and they are VERY kind. They even help us out.
With everything in my life, their disbilities are a mixed blessing. They have taught me lessons I never knew I needed (or wanted) to learn. At the same time, I am almost jealous of the woman with the child who could not move (those of you who know me personally know why!) because of what I go through with Bugaboo. Then I feel like an ungrateful wretch because I have this perfectly healthy, happy child who may have neurological differences but is a a joy to most people. I never get tired of hearing from perfect strangers (and friends and family) how gorgeous my little boy is. I never tire of people asking me about Bug Boy’s little genetic hair display (think: Calico kitty!).
No parent of a child with issues has it easy. No parent has it easy. Parenting is a difficult job to begin with . Add in the stress of dealing with a child with special needs and you have recipe for disaster. No wonder the divorce rate is so high among people with children with special needs! The paperwork, therapies, denial of services, meetings, people coming and going, schedule, appointments, it never stops! It is a full-time job in itself, so I appreciate being able to stay home and dedicate myself to it. After twelve hours of Bugaboo I feel like I have been doing hard labor.
As for the word “disabled,” I hate it because it is so negative and condescending. It focuses on what your child CANNOT do instead of what they CAN do. Do not misunderstand me, I am not one of the “So-PC-It-Mkes-Me-Want-To-Puke” types. I just wish folks would stop being so hung up on a bunch or words and concentrate on the whole child! Concentrate on the blessings! Concentrate on the love!
Speaking of the love, he has been helping me type all along. Nothing like having “help.” I apologize for the lack of proofreading and proper spelling and grammar! I just wanted to post it as quickly as I could before he deleted it all!