5 Things I Need as Mom of a Child With a Disability

Some nights my tears hit the pillow before my head. The exhaustive effort I put into each day to simply keep my head above water never feels adequate. The demands of parenting a child with a disability can be unremitting. From the moment my child was diagnosed five years ago, I’ve felt like I have had to wade through the challenges with little guidance. Many people along the way have lent me their support but rarely had any understanding as to what I was going through, or how best to help.

If you find yourself in this situation, here are a few suggestions:

1. I need the space to make the best decisions for my child. 

When my son was diagnosed with autism, I was bombarded with information from every direction. It was dizzying instead of useful. Children with disabilities can require additional considerations about care, education and health. I hesitantly question and second guess every single therapy available. Trust that I’m capable of doing my own research and that I debate the pros and cons already. Allow me the space to make those decisions on my own.

2. Don’t leave us behind. 

I know plans being turned down or cancelled last minute has become the new normal. Please don’t take offense by our absence. Try to be understanding that my child might not be capable of handling every situation, place or event. And sometimes I may not be up to all that’s involved in tackling them with him. But that doesn’t mean we don’t want to attend or be thought of by you. Over the years, after cancelling and declining more often than we attended, the invites started to dwindle. It hurts. It’s difficult to feel left out. So, even if you’re certain I’m just going to pass, send that birthday party invitation anyway because it’ll remind us both that we were not forgotten. Hey, we may just surprise you one day and be ready to handle your kid’s party at Chuck E. Cheese.

3. We need friends.

When my child was diagnosed, I read a myriad of books and articles to prepare myself for what to he might expect. Nothing prepared me for what I would experience myself. The isolation and subsequent loneliness was crushing. My world very suddenly shifted focus to my child’s care. I went from play dates to doctor’s appointments. Keep me in your life however that has to look like now. My absence from relationships isn’t my desire, but it’s a necessity in this juncture of my life because this parenting can be all-encompassing. I still badly want and need that connection. Reach out and remind me that you’re still there.

4. We need compassion.

Having a child with a disability can be intimidating. Just like anyone else working hard at something, support is so critical to fuel my inertia moving forward.People frequently try to relate to what I’m going through, but every situation is unique, so this can sometimes come across as offensive. Instead of comparing someone else’s circumstances to mine, just encourage me. Tell me I’m doing a good job because sometimes, I just need the reminder.

5. Give me a break. 

Some days the best way to be helpful is show up and help. An extra pair of hands will never be turned down. If we can’t maneuver a night out with you don’t hesitate to suggest a night in with us.