The Unspoken Reality of Parenting a Child with Disabilities

There are days when I struggle to connect with parents who have a different family dynamic than mine. Our worlds seem so different and far apart that I don't know how to bridge the gap. There are times when I feel more similarity to a new mom, whose child still isn't sleeping through the night, as my 11 year old still wakes multiple times a night. I have said many times, and I will continue to say, that I am so grateful we have found our community, where we are seen, heard, and accepted, no matter how we show up. But it hasn't always been easy and it has taken a lot of work. There are a lot of little things that we do on a daily basis and ways we support our children that some parents won't see or understand. These things take a toll and are often unspoken realities that we live with on a daily basis when we are parenting a child with a disability.

The Bedtime Struggle

I came to work the other day and my staff noted that I was pretty exhausted. My daughter had been up all night, unable to fall asleep. This would have been fine if she had been playing quietly in her room, but she found it a lot more fun to run into our room and turn on our light and squeal in delight. She has never been a good sleeper. We have at least one night a week where she will be up extremely early, or not sleep at all. The others, she will often wake in the night or get up early. At 15 years into parenting, we are still surprised by a full night's sleep. Most days you just roll with it, because this is our reality. But there are times when it feels overwhelming, when you feel that your kids are at an age where this shouldn't be an issue. When it's hard to explain how your kids are 11, 13, and 15 and you haven't had a good night's sleep since before they were born.

We have adapted as a couple to try to ensure that we have enough sleep, but this also comes at a cost. We often take turns on the weekends getting to sleep in, in the hopes that the few extra hours we get will support us through the next week. But this means that it is rare for us to be ready to do an activity before noon on a weekend, and when soccer is scheduled for 9 am on a Saturday, we know that we just have to suck it up and hope that we make good choices about going to bed early during the week instead of watching just one more show. But when your oldest child goes to bed at 10pm, your window for spending time together shrinks in the evenings, and we often find ourselves staying up later than anticipated so we get time together to unwind.

The Joys of Mealtime

One of my kiddos was seeing an anxiety counselor and we were discussing their eating habits. After listing off all of the foods that they would eat, she said, "Oh, so only white foods." We looked at each other and realized, that yes, this kiddo only ate plain pasta, granola bars, and Mr. Noodles. And the more anxious they are, the more restricted their diet is. In our day to day life, we were able to adapt around their eating habits. When it gets tricky is when we have to either go to someone else's house to eat or on the rare occasion, eat at a restaurant. Now, our friends know, they get it. I can always count on them to either serve something my kiddo eats or not be offended if I bring snacks. I have also learned to give myself grace when it comes to offering them a well balanced meal. I read an article a few years ago that talked about why kids with autism may prefer packaged foods. It talked about how packaged foods always had the same consistency, whereas an apple, may be sweet or sour, soft or crisp, large or small. The ability to predict what a food will taste like provides comfort, which makes sense when I look at my middle child's eating habits.

I remember a few years ago we had some friends over for dinner. Before they arrived, we had asked what their kiddos eat so we could make sure to have food on hand that they liked. The dad was a tad embarrassed that their one kid only eats grilled cheese and they offered to bring supplies to make one. We both chuckled, as we knew in that moment, these were our kind of people.

Daily Life Activities

I was speaking with another parent the other day about potty training and we were commiserating about how challenging it is. We both had tried multiple times unsuccessfully and my daughter is still only partially potty trained at 11. Often our kiddos don't hit the typical milestones that are expected for their age. I had tried potty training at 2 years old, 3 years old, 4 years old, and was only partially successful at 5 years old. With each unsuccessful attempt I felt like a failure. At this stage, we are still supporting our daughter with dressing, brushing her teeth, buckling her seatbelt, cutting her food at mealtimes, putting on shoes, and many more daily activities. We love helping her and are trying to teach her independence with these tasks, but learning new skills can take months or years.

As our kids age, there are added complexities to deal with. Our kiddos often don't understand the changes that are happening to their bodies during puberty, which can bring heightened emotions and behaviors. We also feel helpless, as our daughter is unable to tell us if she is in pain. We do a lot of guessing and discussing how we can best support her, but it often feels as if we are going into the situation without the necessary information to make a decision. It also involves adding more doctors and specialists to our team, to ensure that we are meeting her needs and supporting her in the best way we can. This in turn adds more onto our plate in terms of driving, dealing with medications, and managing our work and home life schedule.

The Endless Appointments

Having a child with a disability often comes with an overwhelming number of appointments with doctors, specialists, therapists, consultants, and more. There was a time when our kids were young that I had to go part-time at work just to be able to keep up with all of the appoinments our kids needed. With each diagnosis we got, we added more specialists and therapists to our home team. Keeping track of who everyone was, what medication they were responsible for prescribing, and ensuring referrals were in place prior to appointments, was a full time job. I practically lived in my vehicle, driving kids to various offices and hospitals to meet with our team.

My middle child was diagnosed with epilepsy in primary school, which in and of itself took countless months and hospital visits to get that diagnosis. We were in the stage of meeting with their neurologist and trialling meds, when they had a reaction to a medication we had put them on. This landed us in Children's hospital, and we were asked to do daily blood work, which gradually shifted to weekly and monthly over time. Due to my child's needs, the blood work had to be done at Children's hospital. There was one day that I was running late and of course, the parking lot at Children's was extrememly full. I pulled up to the valet and was disheartened to see the sign saying there were full too. The valet recognized me from having been there every day for the last few weeks and waved me over. He told me it was fine, he would park my car near the front, as he knew how long I would be and that I needed to get my kiddo in before the lab closed. I felt so relieved, but often reflect back on this, because living near Children's hospital was a requirement for us when our kids were young. Our daughter had numerous surgeries at Children's, the majority of our Specialists work out of Children's hospital, and we have spent countless hours in their Emergency Department over the years. It's only recently that we felt we have been able to move a bit further to the North Shore, as appointments have been offered virtually and our children's medical issues have been stable thanks to medication.

There were some definite growing pains, but over the years, my husband and I now have a system for keeping track of everyone. We have joint calendars that track all of our appointments, we have meds written down with dosages and times for each child, and we connect every evening to review the next day and discuss who is going to cover which appointments. We talk frequently about our home teams and ensure that everyone is currently meeting our child's needs, from Speech and Language Pathologists, Occupational Therapists, Counselors, and Art Therapists, to the school support teams and upcoming placements.

The unspoken cost of all of this was that it was damaging our relationship. We became co-workers, debriefing about each child at the end of the day, and somewhere along the line, forgot to connect on a more personal level. It is only this last year that we have intentionally decided to reconnect and prioritize our relationship. We are dating and planning fun activities. When going out isn't an option due to lack of childcare, we are trying to connect and have fun at home by cooking a meal together or playing a game. This hasn't been easy and has taken a lot of time and we have definetely fumbled along the way. We are having to learn to communicate again, and not just about our kids. In doing this, we are also having to learn about ourselves, what we want and enjoy, and how we want to show up for each other.

Participating in the Community

Have you ever seen a post in the Facebook moms group about ensuring you have set a reminder in your calendar for the community centre swim lessons? A pretty normal activity for the majority of families is not something that I can readily register my kids in. The year my kids went to a community centre camp, I had to fill out endless paperwork, go to multiple interviews and meetings, and we still were sent home the first day. Our kids with disabilities tend to have a lot of appointments and therapies, but often don't get to participate in recreational activities as much as their peers. And when they do, it often takes a lot of prep work from us beforehand to have them integrated into their community.

But even when we make it out into our community, we can't predict how or if we will be accepted. I have also found it harder as my kids get older as there is a societal expectation of how an older child should act, and my children have invisible disabilities. I find myself explaining my children's behavior to others to rectify a situation in certain situations. My daughter loves to go to our neighborhood coffee shop. She has learned how to order her doughnut and hot chocolate, and this is our little treat before school whenever her dad is away on a business trip, and I am doing the drop-offs. We were there a few weeks ago. She had gotten her treat and we were just waiting for her drink. She always sits on the same bench while she waits and if it is busy, I find her a spot out of the way, where she has some space. On this particular day, no one was at the bench and she sat on her usual cushion eating her doughnut. As we were waiting, a little girl and her dad came over and sat next to us. Usually I would have placed myself in the middle, but on this day, I stayed in front of my daughter talking with her, as she was having a good day, and I thought that this situation would be okay. The little girl repeatedly looked over at my daughter, and unexpectedly, my daughter reached out and hit her. I went through my usual routine, apologized profusely, checked in on the little one, ensured dad was okay, and then as quickly as possible got my daughter to the car, as she was crying and starting to escalate. They couldn't have known that my daughter is going through a stage where she doesn't like to be singled out and stared at, and that this is a trigger for her. I was grateful on this day for their understanding and for the other people in the shop that helped me carry our drinks out to the car, and showed us grace and understanding.

But I have also been in situations where this wasn't the case, where instead of helping, people pulled out their phones to record the situation or stood by watching. Where I was left feeling helpless and not supported by my community. I know as our kids get older, my fears grow deeper. I worry that members of our community, including those that are there to protect and help us, don't have the necessary education to help de-escalate a situation. I know that this needs to change, and fast. We need to all have a deeper understanding of how to support the most vulnerable in our communities so that we can keep them safe.

I think that parenting can be a lonely journey at times, and parenting children with disabilities can be even lonlier, as our journey takes a different path. I think so often we are just 'in it' that we don't get a chance to take a breath and connect with others. We also don't see our stories or reality shared in writing, which is why I think it's critical to start telling our stories and to be open about how our realities look. So many activities and outings were not designed with my children in mind. We spend countless hours trying to adapt to a situation that was never built for us. We also have added appointments and responsibilities that we need to manage on top of parenting. I remember once when I was teaching a High School Life Skills program, a parent on the PAC asked me why my parents didn't show up for PAC meetings. I remember being blown away by the lack of understanding of what they were dealing with in their personal lives. Most days I feel that I am just surviving, barely making it through, so the thought of adding one more thing to my already long to do list, is not in the cards.

I hope that some of this resonates with you and if you ever need someone to connect with, I love speaking with parents about this journey. You can find me at This World's Ours Centre in Vancouver.

Take care,

Koryn