I am well aware that you all look to places like this for inspiration and encouragement. And we all need that. But I’m going to take a moment to ‘keep it real’ because there are days that I am really struggling; days where I feel utterly alone. Yet, I know I can’t be. Perhaps sharing some of my difficulties and shameful moments will help someone out there feel a little more human … a little less defeated … not so lost.
Raising a child with a disability is hard. Really hard. As parents we forget this, or hide it deep, deep inside of ourselves because we love our children so fiercely. We don’t want to admit some moments are pure hell because we want the world to treat our child like every other child – AS THEY SHOULD. We save our meltdowns for private moments because we are already fighting so hard for our child to be included: at school, in society, even with something as simple as an invitation to a birthday party. We don’t want to fuel any negative thoughts or make it seem like our child is different.
Here’s the thing – my child IS more alike than different. He is a regular kid. But there are still differences. And some days they weigh on me. Some days they can be suffocating. And lately, simply by doing the best for my son I’m reduced to tears almost daily.
My son is 6. He has Down syndrome. He is awesome. When he was little and he didn’t want to do something, I’d simply carry him. If he didn’t want to sit in his seat or leave the playground; over the shoulder he went.
Now, it’s different. Now he’s a boy and I’m realizing that manhandling him is not OK. It’s becoming a form of restraint. One afternoon he melted down because we weren’t going to the swimming pool. He collapsed to the ground and refused to leave the pool entrance. I decided 15 minutes of his tantrum was enough and carried him to the car as he kicked and cried, “No.” It was a 20-minute physical struggle to strap him into his seat. I cried as I did it. It broke my heart. “There has to be a better way,” I thought.
I consulted with my son’s private speech therapist. Yes, speech therapist. She is amazing and when I questioned if I should be coming to her about this, she said absolutely, “behavior is a form of communication.”
She confirmed what I already knew. What I was doing was wrong. If I ever want him to learn how to handle these situations appropriately, I have to show him. I have to help him learn. And I need to do that by giving him more time.
Patience has never been one of my virtues. In my previous life I was a television news producer. I made things happen, fast. But kids change everything. I now have to muster up an obscene amount of patience because my 3 little ones deserve it. (My poor husband, he’s getting he short end of that stick.)
Now that I am working with my oldest instead of forcing him to do things – I have channeled a level of patience I never knew I had. Our days are longer. I am building more time into every activity we do. And I am glad. But I am at the end of my rope.
Here’s a snapshot into a few of our days.
CUPCAKES AND CHIPS. In the 90-minute span of walking home from summer school, my son and I spent 30 minutes at a table while I explained why he cannot have a cupcake. He insisted, over and over. Out of the blue, after 30 minutes of calmly talking to him, he gets up; ready to go. On the short walk home we pass a favorite restaurant and he insists on chips (they have awesome chips and salsa). He won’t budge. I sit with him on the sidewalk for 40 minutes telling him that we cannot go to the restaurant now but we can get chips from the store or go to the restaurant another day. Every time he got up he attempted to go to this restaurant. Thankfully he has a personal care attendant who had my younger children so I could work with my oldest. After 40 minutes, he finally chose to stand up and walk home, sporting a smile no less.
CARSEAT DRAMA. My son is a champ at doctor’s appointments. He has so many he knows the drill. But leaving is not always easy. Recently he was exceedingly patient waiting for inept staff at a new facility. But when we got to the car, it was a different story. He insisted on sitting in his sister’s infant seat as I stood in sweltering temperatures and heavy traffic calmly telling him that wasn’t his seat. After 25 minutes he moved to his seat and sat down.
An hour later he did the same thing as we left the grocery store, including lying on his belly on the parking lot floor. This time it took him 20 minutes to come around.
As hard that 3 1/2 hour span was, I drove home feeling victorious because getting into his seat was HIS decision.
GETTING HOSED. My boy loves water. He and his brother found a rain barrel at the playground one day. I convinced the younger son to leave. My oldest insisted on staying. He was having so much fun he started stripping down. I did my best to handle the situation with finesse until my 3 year old starting walking home without us. Danger trumps working on behavior every time. So I carried a half naked, soaking wet, crying 6 year old while making sure the 3 year old held my hand while we crossed the street.
BATHROOM BRAWL. At one of his other regular doctor visits, we have a routine. Part of it is using the bathroom before we leave. But some days he refuses. Or he touches every disgusting surface you can think of in the bathroom. Or he splashes in the sink. Or he sinks his hands as deep into the bathroom waste bin as possible. Getting him to leave takes anything from bribery to a timer. Maintaining patience in a public bathroom is one of the more difficult parts of my week. But we managed and made it to the car after a few screams, collapses to the floor, and sprints in the wrong direction.
MORNING GLORY. Mornings are hard for anyone. For kids, everything from going potty to sitting down for breakfast can be like pulling teeth. No matter how much extra time you build in, it tends to run out. Getting my son outside the door fully clothed, medicine taken, teeth brushed, lunch packed and back pack on is nothing short of a miracle most days. Actually walking to school rather than on my shoulder is a total crapshoot. The timer has become my best friend. But there is a good chance he will be late for school often until we get over this hurdle.
STORE SHENANIGANS. Having a family of 5 means spending a lot of time at the grocery store. My children actually really enjoy going with me. Sometimes it’s magical. Other times I spend most of the trip chasing my oldest son through the aisles with my toddler strapped to my chest and my 3-year-old in the cart. Literally running in circles. Thankfully a bag of popcorn can usually get him to sit in the cart long enough to get through check out and get the hell out of there.
WHY DO WE DO IT? I have had loved ones asked me why I bother. Why do I put myself through this? Why not let my kids watch TV more often? Why not let someone watch them while I go to the store? Why eat out when you can order in? Why take 3 kids to a museum? Why not just make things easier for myself?
Because by staying home, my children will never learn to behave in a store or at a restaurant or in a museum. Because I get stir crazy. Because I love sharing new experiences with them. Because I adore seeing the 3 of them interact outside the confines of our home.
Because if my son doesn’t learn how to handle these situations now it will only get harder as he gets bigger and stronger.
Because existing in a vacuum built to make things easier on me isn’t living – not for me, not for my children.