Somedays I can almost forget that I’m parenting a child with special needs. Just trotting along down the path, enjoying the scenery and completely enthralled with the beauty and joy Harper exudes. But sometimes I look up and realize that I’m on a different path than the majority.
And it feels incredibly hard.
I had one of those days recently, where I collapsed under the weight of special needs parenting. I was in the middle of a parking lot, changing my daughter’s dirty diaper on the asphalt. As I struggle to get her cleaned up, the wind catches my drink that I placed on top of the car and comes crashing down exploding all over my feet.
And I’m frustrated.
But not in the way that you grit your teeth and get through it, only to laugh about the story later as you recount it to your friends.
It’s a deeper level because my friends won’t experience this the way I do. Because this isn’t just a one-off toddler mess situation. The world is not set up for Harper, my daughter who has Down syndrome and it is getting harder and harder to ignore.
And the only way to make my life easier is to ask for accommodations. And for the most part, people have been very understanding and willing to work with us. Which is wonderful. But I still have to speak up. And I wish I didn’t have to ask. Because when you are asking for a special accommodation there is always the chance that someone will say no. And that fear paralyzes me from asking.
But then I end up in a parking lot changing a diaper because I didn’t ask for help sooner.
As the gap in development grows between Harper and her peers, it is getting harder to ignore that she will need accommodations if she is going to participate in this world. And if I don’t ask for help, she won’t get what she needs. That feels heavy. Because I don’t like asking for help. I don’t like feeling like I’m inconveniencing others.
But I’m learning slowly.
I’m realizing that people don’t know that we might need some extra help to participate more fully. It’s not that they intentionally are set up to exclude her. So, I’ve got to get more comfortable with asking for help. And by being more honest and open about what we need, it brings more awareness. So maybe another mom won’t have to speak up next time because the accommodation will already be arranged.
And I’m thankful for the people that have stepped up in ways to help make it easier for us to participate. Like when my friend invited Harper to participate in a soccer class with her son. She made the phone call to the organization to see if it was ok for Harper, who technically was too old for the class, could be a part of the class. I didn’t ask her to make the call. She just took on the ask for accommodation on my behalf. And then passed on the good news that it wasn’t a problem for her to join the class. It’s so nice to have people who are willing to make the phone call for you.
I don’t know if it will get easier. I’m really still in the beginning stages of parenting a child with a disability. But I hope that I will get better at asking for help. And I hope people will grow in awareness of how they can accommodate people with disabilities.
