10 Things A Special Needs Parent Wishes They Had

If you’re reading this piece, I’m going to say “thank you” before anything else. Reading this means you care enough to know what it’s like to be raising and caring for a child with differing abilities. So, thank you for acknowledging that we exist, and that we truly do have different parenting struggles and heightened challenges that we face 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!

Someone To Talk To

Parents who are raising or caring for a dependent with differing needs require good support from 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 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 a world of difference to us knowing that you’ll be there and we can cry on your shoulder.

Sleep

I know parents in general are looking for this, too. I completely get it. Here’s where it’s different for many of us special needs parents: 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 lie awake at night worrying about the things that no parent should worry about, 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.

Help – Housework, Groceries, Cleaning, Make Me a Cuppa

There are so many ways to help a special needs family, 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 shop for 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. That gesture made me cry. It doesn’t take much, but to 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!

No Judgement

If you see a special needs family 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 discipline our kids more, they would listen. 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, just like other families. Let us be part of what comes so 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.”

Strong Education Support

I’m a teacher and I have to admit that I was new to the world of special education. It’s only when I had a child myself with special needs that I began to educate myself on what supports my child needed, and what he was legally entitled to. Let me make that clearer so the people at the back of the room can hear: Students with differing abilities aren’t getting more, they are simply receiving what they need to be successful. It seems to me the entire education system needs a reminder of what this means, 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 support and just down the road, another school isn’t. If this pandemic has taught us anything, it’s that kids with special needs have lost out the most, and that things need to change. We need more special education supports, consistency among school boards, and funding — so let’s do it already.

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. Yes, try to imagine it. It will break you, I promise. This is why you see us at rallies and spending our time with government officials, on TV news broadcasts, on the radio, or writing things like this.

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 at school, his peers still see him as Max. He attends the same programs as they do, and he is included in whatever activities are taking place. Of course, things are modified as much 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 them makes them feel seen. There is no better feeling in our world.

People Willing to Learn

If you want to support us further, please educate yourself about who our children are. We are always expecting our kids with special needs 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.

Reliable Respite

Nothing will help us more than to offer to watch our children. If parents who are caregivers to dependents with extensive needs don’t get respite, they aren’t able to cope. Caregivers are more likely to suffer from mental health and physical ailments than those with typically developing children, so it’s so important that they get the rest they need away from their posts. We are literally sometimes alone with our kids 24/7 with no help, which makes us less and less able to care for ourselves 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 us to just call a sitter, so we need someone who knows our child and who we can trust.

People Who Will Stand Next To Us

On top of the demands of parenting a child or adult with differing abilities, most of us have to do a lot of advocating to access the support we need. When you advocate with us, you also advocate for better solutions and systems for everyone else. Because when we advocate for inclusion and equity for children with special needs, we also give every other child what they need, too. 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. Because in helping us, I promise you are not only helping us — you are helping our children as well.