This is a dangerous way to think when you have a child with disabilities. We need a lot of help. So much help - sometimes we forget that other parents can do things on their own with their kids. And when we witness those moments, it’s a heavy reminder of how different our lives really are.
I really shouldn't compare my parenting challenges to parents who aren’t raising children with disabilities. It’s just not fair to do. But - I am human and I forget. And I compare.
I clearly remember a moment when I began making these unfair comparisons. My kids were two and four at the time. We were at the library for a summer reading program with our sitter, Heather.
|Heather and Kathryn|
|Heather and Matty 2007|
As the librarian finished her story, I overheard a mom of four kids all under the age of six tell another mom, “I’m trying to decide if I should take the kids to the mall or to the pool from here.”
Wait – what? With your four kids? By yourself? What are you talking about? How do you shop with four kids? Or watch them
at the pool by yourself? I barely made it to the library today with two kids - and I have help.
Another mom in this conversation replied, “Meet us at the pool, we are heading straight there after this.”
I told myself there is no way that I heard them correctly. I looked at these women as if they might know the secret of how to be successful moms. I impulsively asked, “Wait, do you mean you are taking your kids by yourselves to the pool?” Immediately I wish I hadn’t asked. I already knew the answer.
The mom of four said, “Yes, the big ones are easy - they listen to me. The little ones will just follow what the big ones do.” Short pause and then, “do you want to meet us at the pool?”
My mouth was hanging open in shock and wonder. Instantly I became aware that we lived in totally different parenting worlds. She made it sound so effortless. Was her life as a mom really that easy? The familiar wave of grief for the motherhood experience I’d imagined for myself traveled through my insides.
I knew I had to respond to the pool invitation before my voice would start to crack with emotion, “not today, thanks anyway.” I began to think of myself as an inadequate mom because I couldn’t take my two children anywhere by myself. I always needed help.
For Matthew (and I imagine that most parents of children with disabilities will agree with me), one-on-one supervision is required. ALL. THE. TIME. Not just because there is a pool involved and he might fall in, but because he has no impulse control. I am quick on my feet, but I can’t always guess his next move. If he walks by people eating at an outdoor café, he might grab a delicious looking French fry off their plates. If he stands next to the buttons inside the elevator, he will definitely push them all - including the emergency call button. Is the stove on? He will touch the hot pot with boiling water in it, guaranteed. I’ve learned over the years to position my body in defense mode – placing myself between Matthew and that stranger’s plate of fries, or the elevator buttons, or the stove. It is draining. I can't shower if he is home (unless he's asleep). When he impulsively runs out the front door to see a car drive by, I need to be right there next to him to stop him from running into the street. Even now at age 13. I need help.
Soon after that day at the library, I started inventing outings that I could successfully accomplish alone with the kids. I needed to feel successful as a mom. We went to the Dunkin Donuts drive through (instant success when no one has to get out of the car and everyone gets a treat). We went to the local Gluten Free Bakery where Dee, the thoughtful and understanding owner would walk us out to our car when we had finished choosing and purchasing our goodies. Partly because she loves kids and partly to help make sure I got my kids back in their car seats (she knew I needed help – thank you, Dee).
As kids grow up, most parents notice that they need less help. Not me. I need more help. This is hard to swallow. But part of my reality.
Today, most of my friends’ kids are at the ages where they can begin to stay home alone. My friends are sharing their excitement that they no longer need to hire sitters when they go out for an evening because their kids are old enough to watch themselves. Or the big kids watch the little ones. If I equate parenting success with not having to hire help, I will be a failure forever.
It’s time for a new mindset. Success as a mom is asking for help and receiving it. No matter how hard it is to ask. No matter how painful it is to watch other moms do the things with their kids that I imagined I’d be able to do with my children. Success as a mom is asking for help, allowing it to happen, accepting the help gracefully and appreciating the support given.
** Thank you to all the family members, grandparents, cousins, babysitters, lifeguards, teachers, neighbors, community members, colleagues, coaches and friends who have supported me with the gift of help over the years. Your presence and support along this journey have brought comfort and encouragement -even on the most challenging days. **