To the Parents of Kids With Disabilities, You Do Enough

The past couple of years we have attended a camp in William’s Bay, Wisconsin, called Chatter Matters. It is focused around kids with disabilities who use a communication device to communicate. This is the one time a year we are surrounded by families who “get it.” One thing I brought away from camp this year that stuck with me, is how many of us parents feel we don’t do enough for our kids. I feel like this often.

So, here I am, writing a letter to you, to me and to any other parents of children with a disability who think they don’t do enough.

You do enough, and you are amazing.

I know you’re exhausted, but you still get to Speech therapy on Monday, Physical therapy on Tuesday and Occupational therapy on Wednesday. You are probably also running to extracurricular activities ranging from horseback riding (hippotherapy) on Saturdays, to adaptive baseball on Monday and Wednesday, to adaptive swimming lessons on Wednesday evenings at your local YMCA and on top of those, doctor appointments you have to schedule and show up to with a clear mind. And sometimes you juggle your own job to pay for everything, either at or away from home.

You do enough.

Besides all the therapies, you’re trying to help your child live the most “normal” life as possible by going to the park, or maybe a stroll through the zoo, or taking a family trip somewhere to get away from all of the hustle. But, let’s be real, sometimes the hustle is anywhere and everywhere we go.

If you’re like me at all, every waking moment of every day is something close to one of those therapy sessions we fight so hard to get approved by insurance on a quarterly basis. Every step up or down, every toy, the bins of corn and beans we use for sensory input that end up all over the floor, every time you play a game and make sure the communication device is out and ready and set up to make sure they are learning how to navigate around properly, you are there.

You do enough.

There are probably days when you don’t shower and your hair is a mess, but your kids look clean and put together. There are probably days and nights when you just want to cry. There are probably days where coffee is the only thing that keeps you going. There are probably days when you’re angry at the world, and every questioning look from a stranger makes you want to teach the world about respecting people with disabilities. There are probably days when you make it all look so easy because your child had a good night and you were able to sleep more than three hours at a time the night before.

This is our normal, and we do enough.

On top of therapies and other activities, you handle the medical bills. The countless hours on the phone with insurance companies and all of the follow-up calls to the medical professionals that all somehow seem to forget that more than likely we can’t answer our phones half of time when they finally call back days later, more than likely after our third call that week. We’re in a therapy session when they call, learning new ways to help our children this week while they’re at home.

You do enough.

 

Lets talk about IEP meetings. The one thing we can’t avoid and we pretty much might hate to the core. Who wants to sit in a room with multiple educators and therapists and hear about how our child isn’t making progress, or their progress is so slow they’re still learning the numbers 1, 2 and 3 — while all of their “typical” classmates are already working on multiplication. We fight for aide support, lunch support, buddy support, more therapy time, more 1:1 time and try to plan out a curriculum that “includes” our child in a typical classroom setting for a percentage of each day, which seems to be more for social interaction because you’re told your child should be focusing more on “life skills.” If you’re not familiar with life skills, think about cleaning a table, emptying the garbage and sweeping the floor. Once they get older it will include things like shopping at the grocery store and other day-to-day things. Luckily, we have had a lot of luck with our schools out here for my daughter, and they have been very supportive with her all around, and it’s been amazing. But, I know this isn’t always the case and no matter what, IEPs are always the time to put your game face on.

We do enough.

On to something as simple as a shopping trip to Target. I think it’s great they have the new carts to help kids with disabilities. Every store should have these. And if you’ve used them and they work for you, that’s great. My daughter will not use a cart unless she’s standing on it or trying to climb in the cart entirely (more like making me pick up her up and lift her in and out repeatedly). Add low muscle-tone yet constant movement. It takes us about 10 minutes to get to the back of the store between stopping and getting in and out of the cart, on top of trying to communicate what we should and shouldn’t be doing that probably looks like charades to most people because of lack of verbal communication, and it’s exhausting — mentally, physically and sometimes emotionally. Emotions can hit on any day, for me it’s when I see the 7-year-old girl holding her Starbucks cup as she walks nicely next to her parents, talking about something fun she did with her friend…it’s hard not being able to have a full conversation with my daughter and know what she’s thinking. And I wonder if she’s thinking the same thing as well. But we walk on and we do our thing and get stuff done.

We do enough.

Let’s talk about one last thing we probably have dealt with at some point while out in public: strangers and their looks of judgment. Whether a child is in a wheelchair, screaming, wearing leg-braces, licking the window at the entrance of a store, not answering a question when the checkout lady asks their name and age — we have felt that judgment these strangers show in their eyes and possibly hear them as they whisper and walk past you. Our kids do not deserve that judgment, at all. I don’t know about you, but I’ve given a few mean glances towards these people and muttered somethings under my breath. Sometimes I try to explain why my daughter isn’t answering a question and sometimes we use sign language to say “thank you” to help get the point across when she doesn’t answer the checkout lady’s question, and they usually get it… but then there are the people who don’t get it, the ones whom I have written about on a rant on Facebook while also making little business cards to hand out about my child and her disability in hopes to spread awareness in the future, in case the occasion arises again.

You are your child’s advocate.

You do enough.

Being a parent of a child with a disability can be hard. I don’t know how many times I’ve heard people tell me they could “never do what you do.” Honestly, what is that even suppose to mean? I’m pretty sure most people mean it as a compliment and in a roundabout way are telling us we are strong, at least stronger than them. And I can’t argue with that, because maybe we are stronger because of our child. But, let’s try not to say this in front of my child –she can hear you. How would you feel if someone talked like that about you?

Being a parent is a wonderful gift, and it is also putting yourself last each and every single day to make sure your children’s lives are as wonderful as possible. We try to make time for ourselves when we can, but, sometimes we get tired, sometimes we cry, sometimes we cancel on friends (the ones who have actually stuck around), sometimes we don’t shower, sometimes we don’t take out the communication device, sometimes we miss therapy, sometimes we miss baseball practice, and that is OK. We are not perfect, but we do try, and we try the hardest out of any other people I know, and sometimes we need to acknowledge that we do enough, we do more than enough.

We are strong and we are amazing.

Keep your chin up, you’ve got this.

You do enough.

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