12 'Truths' to Remember About Parents of Kids With Disabilities

Sadly, before becoming a parent to a child with a disability, I had no idea what some families were walking through. They say when you know better, you do better, which is why I collaborated with other parents of kids with disabilities (whom I’m honored to call friends) and asked what they wanted the world to know about their families. I wanted to give them the chance to express what’s inside their hearts. Their strength and deep love for their children knows no limits.

I hope this list will inspire you to support families with disabilities in your community, to reach out to children you know who are used to being ignored, to have a conversation with your own children about including and loving all human beings regardless of our differences, and encouraging a family that might possibly be walking through the hardest season of their life.

1. Our children are the best thing to ever happen to us. Any loving parent would call their child a gift and a blessing. Our families are no exception.
2. Please don’t feel sorry for us. My child is not a burden. It’s difficult at times dealing with my child’s medical issues, but my child is such a blessing and a light in this world.
3. When your child has a chronic condition, being a parent becomes a full-time job. I am my child’s caregiver, and not many –if any– people can safely watch my child. For that reason, there will be lots of times I won’t be able to join you for that girls’ night, dinner out on the town, or even just your child’s birthday party. Like anyone else, we still want to be invited though. An invitation, even if I have to decline, still goes a long way to make me feel included despite not being able to attend. I might not be able to attend this time, but hopefully the next time I will. Please, keep trying. If you do, I will too!
4. Please don’t stare. Ask questions instead. One of the worst feelings in the entire world is knowing you’re being stared at by someone, and knowing it’s not for any good reason. I understand it’s human nature to be curious — I would be too. But my feelings would not be hurt, but rather thankful if you asked me questions about my child instead of staring silently and wondering why my child has a wheelchair, why my child is banging their head against something they shouldn’t be, or why my child screams at the top of their lungs. I would rather you ask. Plus, I love to talk about my child (like any other parent), so give me the opportunity to do so.
5. “Parenting shaming” is a real thing. Some people feel the need to make comments to parents who worry too much about their children. This is where the hurtful name “helicopter parents” came from. I see such value to the idea of not parenting out of fear, truly I do. However, parents whose children have a disability are playing in a completely different league and shouldn’t be compared to “typical” parenting. Yes, parenting, whether your child is sick or not, can be incredibly difficult and exhausting, but “typically” developing children have a healthy sense of fear to keep them from danger. Our children sometimes lack the understanding of safety; they are fearless. If I don’t parent out of fear sometimes, my child is likely to get extremely hurt or could even die. It’s that serious. Many don’t understand what can hurt them. They often don’t understand that putting things they don’t know how to chew in their mouths can cause them to choke. I can’t take my eyes off my child for even a second. That isn’t being a “helicopter mom” –it’s straight up survival.
6. Please don’t tell me “it’s just a phase.” Saying this along with “one day they’ll be out of the house and you’ll get to sleep again,” is not helpful. The truth is, unlike your child, mine will likely never leave the house, and I am his full-time caregiver for the rest of whatever days I have left on this Earth. I don’t want people to walk on eggshells around me, but it also stings to have to hear these comments that for us, just aren’t true.
7.  Please don’t say “I don’t know how you do it.” Any loving parent would do what we’re doing, which is taking care of our child and loving them the best we can. “I could never” statements aren’t helpful. Trust me, you could, if you were in our shoes. From where we’re standing, there is no other choice.
8.  We need a tribe just like everyone else. Every parent needs support. There are so many activities for young parents, for young moms, because the world knows that in this particular season of life, parents need a break and someone who can relate. For parents of sick kids, this isn’t just a season, but rather a lifetime for which we need support. My church told us they weren’t equipped to handle our child’s needs in the nursery, so we had to stop going. When my friend’s child reached a certain age, and my child who was the same age was still rolling around on the floor and playing with infant toys, they stopped coming around. We haven’t had a date night in years because we have no family in town, and can’t afford nurse care.
9. We celebrate milestones too. You wouldn’t miss celebrating your child’s first time crawling, walking, or talking. Well, I wouldn’t miss mine either, even if it comes much later in life. This journey has taught us to see miracles and blessings even in the small things.
10. We still have a life to live. My family’s need for groceries, getting haircuts, and getting out into the world for our sanity’s sake doesn’t stop because our child has a disability. This means I’d greatly appreciate it if you would smile when my child is screaming in the bread aisle instead of glaring at me, or giving us dirty looks, or making us feel completely unwelcome. If I waited for a “good” time to go anywhere, we would never leave our house.
11. We generally live in a state of extreme exhaustion. One of the most gracious and meaningful gifts you could ever give families is to offer to babysit or watch their child for even an hour or two so they can simply sleep. It would be life-changing.
12. Above all else, treat my child like the beautiful human being they were created as. You know that same awful instinct so many people get to just “put your head down” and just ignore the homeless person as you walk by because it feels awkward or uncomfortable? If you live by this, you walk on by like they just don’t exist. It’s dehumanizing. It’s not loving. Nothing breaks my heart more than watching people notice my child ahead, and then walk right on by, head down, on purpose. It’s soul-crushing. If you just said hello, they could bless you with the world’s most beautiful smile.