This is my life. It’s not quite how I planned it, or how I dreamed it would be. But, here we are. I know no other way. I have one child and he has cerebral palsy and uses a wheelchair. He’s 100 percent tube-fed, and that comes with many challenges for him.
Eli is also an amazing little boy with a smile that lights up a room! Well, a room where people know him, anyway. Raising a child with a disability sets you apart from “the norm.” When we are out in a crowd, it’s easy to feel like an alien in a strange land. Sometimes I think to myself, “Are we invisible today?” Other days, I think, “What the heck are they staring at?” But, mostly, I just wish that people would treat us like just another face in the crowd. Yup, we go to the mall, because Eli wears shoes, too!
I sent a questionnaire to several of my friends who are raising children with special needs, asking if they ever feel alone in a crowd. The findings indicated that we all have. What I found most interesting is that all of us take the burden onto ourselves. We understand that people just don’t know how to respond to us, include us or even interact with us.
I feel very blessed to be able to share my story with you, and let you know how this one mommy feels about this subject, a topic very prevalent in my circle of friends.
My circle of friends is rather unique. I gravitate toward others who are on an alternative path in parenting: parents of children with special needs. I connect easily with moms who understand the heartaches of missed milestones, and the joy of delayed milestones we thought would never come.
I have never had the opportunity to potty-train a child. I’ve never turned a spoon into an airplane and then had peas spit in my face. I don’t know what it feels like to have a child purposely defy me, or choose how to discipline my child. We don’t have a chore chart in our house, and my son has never had a consequence for his actions because he doesn’t have bad behavior. I will also never hear the word “mommy” out of his precious little mouth.
Instead, my house is full of syringes, formulas, feeding pumps, drain bags, suction units, wheelchairs, standers and stethoscopes. We are on a first name basis with most of Eli’s doctors, we know the best places to shop around Seattle Children’s Hospital, not to mention the best place to order a pizza if you have to stay the night. Seattle Children’s Hospital is one of my favorite places to be, because it’s the only place we go where we are surrounded by other tube-feeders, and kids with even more equipment than we travel with. This is my life.
My favorite quote from my friend Katy, who responded to my questionnaire, was: “When I’m home with my son, we are normal. It’s only when we go out into the world that people have the power to make us feel less than.”
This really got me thinking. How can we expect others to help us feel like we fit in? My conclusion is that until you know what something feels like, you just can’t really know what something feels like. Deep, I know! It’s so true, though, isn’t it? None of us raising a child with special needs expects anyone to understand everything we are going through. We just want you to withhold judgment in the moment of realization that we are different from you. Maybe our child is being too loud in a public place because of their amped-up sensory processing. Maybe they are having a meltdown because an interruption to their normal schedule throws them off. Maybe the family wants to try for some “normalcy,” so they are attempting an event that they know is going to present challenges. Can you help us? Can you smile at us? You know that smile that says, “Wow, you have your hands full, but I know you love your child just as much as I love mine, and would do anything for them.” You know ... that smile?
The Playdate Expo is coming up March 16 at the Yakima Convention Center. The “Friends of Children’s Village” will have a booth offering activities geared for children with special needs. They will also have a “QUIET ZONE!” If your child has a tough time with any of the noise or activity, please find their special haven created for families just like yours. You just may find out that you are not so alone after all. This is our life!