If you’re reading this piece, I’m going to thank you before anything else. It means you care enough to know what it’s like to be raising and caring for a child with disabilities. So, thank you for acknowledging that we exist, and that we truly do have different parenting struggles and face heightened challenges every day. Here are some of the most needed things parents and caregivers hope to receive in no particular order of importance, because they are all equally weighted!
To the caregivers of exceptional kids reading this, I salute you!
1. Someone to Talk to
Parents who are raising or caring for a child with disabilities need the support of trusted friends and family. One of the things we learn early on in our journey with our kids is that it’s so difficult to find people we can just talk to. Sometimes we want to talk about the things that pain us or hurt us like not being able to cope, and we need a trusted and non-judgmental ear to help us with this. We are searching for empathetic hearts who will simply acknowledge our struggles and let us cry, scream, or even stay silent beside us. Trust me, it makes the world of difference to us when we can cry on your shoulder and know you’ll be there.
I know parents in general are looking for this, too. I completely get it. Here’s where it’s different for many of us parents of kids with disabilities. Some of us aren’t sleeping at all, or are getting very minimal sleep. Maybe it’s because our children don’t sleep because they have sleep disorders too. Maybe it’s because we need to be monitoring our kids as they sleep for vital life signs and feedings. Maybe it’s because we lay at night worrying about things like what will happen to our children when we are no longer here? So, if there is any way to give us a few hours to simply recharge so we can continue our battle, please help. We love day naps just like anyone else, but these are long gone, and we would welcome the comeback.
3. Help – Housework, Groceries, Cleaning, Make Me a Cuppa
There are so many ways to help a family with a child with a disability, because the needs are so many. In addition to caring for our kids, some of us are battling our own health issues, or need to work, or have other members of our families to care for. Offering to buy groceries, pick up items, or coming over to mop our floor takes a load off in our daily lives. My neighbor once saw our grass getting too long and knew my husband and I were both sick, so he mowed it for us. His kind gesture made me cry. It doesn’t take much, but to us and for us, it makes all the difference in the world. If you don’t trust your culinary skills to make us a meal, no problem. We like takeout, too!
4. No Judgment
If you see a family with a child with a disability in the community, all we ask is that you see us like everyone else. Please don’t judge us if you see our kids in meltdown mode and don’t understand why. You can ask us if we need help or simply say nothing. But please do not tell us that if we disciplined our kids more, they would listen. Same if you see a child or an adult with a disability, please don’t stare or make comments, because I assure you we do see you and feel you staring.
Many of us rarely get the opportunity to venture out in public because it takes so much effort, so please give us the space and grace we need. We want to be in the stores, the malls, the theme parks, the salons, the parks. Let us be part of what comes simply for so many. I once carried a sign in my bag which was laminated and said, “Meltdown in session, nothing to see here. Please carry on.”
5. Strong Educational Supports
I’m a teacher and I have to admit I was new to the world of special education. It’s only when I had a child with a disability that I needed to educate myself on what supports my child needed and what he was legally entitled to receive. Let me make that clearer so the people at the back of the room can hear: students with disabilities aren’t getting more — they are simply receiving what they need to be successful.
It seems to me the entire education system needs a re-haul, and the people who are in power to make this happen needed to do so, yesterday. No parent should be put in a position to beg or feel grateful for the things that should have been put in place for all kids, so let’s catch up, shall we? Worse, no parent should feel guilty because their child’s school is offering supports and just down the road, another school isn’t. If this pandemic has taught us anything, it’s that kids with disabilities have lost out the most, and things need to change. We need more special education supports, consistency among school boards, and funding.
6. Sustainable and Consistent Therapy Options
It would seem like the most obvious of the list, wouldn’t it? I mean if you have a medical condition, treatment should be available and covered, right? Nope. We have to find out in the most disheartening ways that our kids don’t have supports and treatments readily available, and that waiting over two years for them is a normal occurrence. Imagine your child doesn’t communicate, cannot use the washroom, or cannot move his body and needs therapy, and you’re only offered consultations every three months of things you can try to do with your child. This is why you see us at rallies and spending our time with government officials, on T.V on the news, on the radio, or writing things like this.
7. Inclusion for Our Children
This one makes me cry. All parents want their kids to be included, so why would it be different for our kids? One of the most amazing things that has happened to my son is that when going to school, his peers still see him as, “Max.” He attends the same programs as his peers and he is included in whatever activities are taking place. Of course, things are modified as best as possible, and in some cases, alternate programming is required. Parents — you know that child who moves differently, communicates differently, is different in some way? Invite them to your parties, your gatherings, and while you’re at it, invite the parents too. They may not attend, but just knowing that someone thought of us makes us feel someone sees us. There is no better feeling.
8. People Willing to Learn
If you want to support us further, please educate yourself about who are children are. We are always expecting our kids with disabilities to learn how to live in a world that wasn’t made for them, but we never ask the people around them to learn more about them. Read, ask questions, and please learn more about what our children face every day. It makes it so much easier to express our needs when we have people who understand our kids.
9. Reliable Respite
Nothing will help us more than to offer to watch our children. If parents who are caregivers to kids with disabilities don’t get respite, they aren’t able to cope. Caregivers are likely to struggle with mental health and physical conditions related to stress, so it’s so important that they get the rest they need. We are sometimes alone with our kids 24/7 with no help, which makes us less and less able to care the way we need to. Many times, we are afraid to leave our children with people we don’t know because our kids may not be understood or because we fear abuse. It’s not as simple for users to call a sitter, so we need someone who knows our child and whom we can trust.
10. People That Will Stand Next to Us
On top of parenting a child or adult with disabilities, most of us have to do a lot of advocating to access the supports we need. When you advocate with us, you also advocate for better solutions and systems for everyone else. When we advocate for inclusion and equity for children with disabilities, we also give every other child what they need. Stand beside us when we are advocating at rallies or take it one step further and speak out against ableism and discrimination against those with disabilities. Share our stories, our photos, our posts. Trust me, we need more allies and we never seem to have enough. And when we fall, because we will fall often, please be there to help us up. I promise you are not only helping us, you are helping our children.