Introduction

In addition to the worry and anguish brought on by their child’s condition, parents have to deal with regular medical appointments, complicated forms, and a lack of resources. Some choose to work less or to leave their jobs altogether in order to care for their child, which can put a strain on finances. And, because children with disabilities require a lot of attention, couples wind up having less time for their other kids. In the end, every aspect of a family’s personal, social, and professional life comes to revolve around the needs of a single child.

But even this cloud has its silver lining. There are the small victories, protective siblings, amazing support networks—and, of course, oodles of love for this child and all the pride that comes with watching them grow and integrate into society!

To better understand what these families go through, we asked eight parents of special-needs children to tell us about one aspect of their lives. While each family’s experience is unique, the parents all have one thing in common: a devotion to ensuring the happiness and well-being of their child. Here are their stories.

Getting the diagnosis

By Nathalie Vallerand

“My husband and I would take turns sitting by Ariane’s side at night while she was in the hospital. She had to do a hearing test because meningitis can cause hearing loss. I was sure that she was fine so I wasn’t worried. But during the test, I could tell from the look on the audiologist’s face that something was wrong. Then she told me, “I regret to inform you that your daughter is profoundly deaf in both ears.”

The words weren’t registering. I couldn’t believe it. I called my husband and he came to meet us. He cried and said it was his fault that our daughter was deaf. It’s a little complicated, but Ariane has a minor kidney problem that is hereditary and that lead to a urinary infection. The bacteria spread and she developed meningitis. That’s why my husband felt he was to blame. For my part, I couldn’t stop thinking that I was about to lose the ability to communicate with my daughter.

Not long after, the pediatrician came by and assured us that Ariane could have a very good life despite her handicap. Then, the audiologist discussed the option of cochlear implants to help her hear. We decided to go ahead with the operation.

I let Ariane and her determination carry me through. Of course, I was sad. I sang her lullabies knowing full well that she couldn’t hear me. That made me cry. I consulted a psychologist at the IRDPQ, the Quebec City rehab centre for people with physical disabilities. It felt good to talk to someone neutral.

My other two children, who were 15 and 7 at the time, took the news about their sister’s handicap well. In hindsight, however, I realize that my youngest son didn’t get enough attention.

As for Ariane, she’s been able to hear since she was 6 months old thanks to the cochlear implants. She’s 5 now and doing well. She even sees a positive side to her handicap : she can unplug her device to play quietly, in her bubble. It’s a good thing I learned sign language!”

Impact on the couple and work life

By Kenza Bennis

“In 2013, when she was nine months old, Roxanne was hospitalized after experiencing major convulsions in her sleep. It was Christmas Eve. The doctors ran a bunch of tests but found nothing. In early 2015, they told us she had a global developmental delay, but it wasn’t until February 2016 that we were given the official diagnosis. Our little girl had an intellectual disability caused by a genetic mutation.

The news gutted me. As parents, we want our children to be healthy. We dream of watching them grow up, go to school, become independent. That dream was suddenly crushed! The diagnosis was a shock, to the point where I became depressed and could no longer bring myself to work. My husband reached his breaking point a few months later and had to stop working as well.

There’s no doubt that managing our daily routine is a huge challenge. Roxanne is behind in all areas and everything is a struggle. She learned to walk very late, throws frequent tantrums, and still wasn’t potty-trained at three and a half years old. We need to watch her 24/7. It’s exhausting.

We have to plan everything we do around Roxanne—think about what she can and can’t do and the logistics of where we can take her. I’d be lying if I said this hasn’t created tension between me and my husband. He tends to be more protective of her whereas I want her to push herself.

Looking back, I think we’re coping pretty well. After a lot of discussion, we decided that I would stay home to be with Roxanne for all of her appointments with her occupational therapist, physiotherapist, speech therapist, and so on. She has several appointments every week, and it’s these specialists that allow us to see our daughter’s progress.

In my opinion, now’s the time that she needs to be stimulated. It might mean sacrificing my career for a few years, but I want to give my daughter the best shot at reaching her full potential.

My husband is doing better and is in the process of returning to work. Living on just one salary makes things tougher, but we’ve come to the decision that our family’s well-being is more important than travelling or getting a new car. Ever since we made that choice, we’ve felt more at peace.”

The perceptions of others

By Nathalie Vallerand

“Éli-Noam has a hard time following instructions, is completely fearless, and hardly ever talks, but he makes a lot of noise. You always know when he’s in the room, and he has trouble sitting still.

When he gets overexcited in public and starts climbing everything in sight, people sigh and give us exasperated looks. They think we lack authority and make it clear that we’re being a nuisance. But it’s no use scolding Éli-Noam or punishing him. He doesn’t understand because he hasn’t gotten there on a cognitive level.

In the beginning, the negative reactions we got from other people made my girlfriend and me sad. It doesn’t bother us as much now that we’ve learned to live with our son’s condition. At the same time, I still find it hard to believe that people can be so self-centred. That type of reaction is disheartening and makes me angry sometimes.

Despite everything, I think it’s important to avoid shutting ourselves off from the world. Getting out of the house is good for keeping our spirits up, getting Éli-Noam used to being in new surroundings, and getting others used to people who aren’t like them. But we also know where to draw the line. There are places and situations where it wouldn’t be appropriate for us to bring our son.

Overall, I get the sense that people are more open and compassionate than before. It could be the fact that we’re hearing more and more about kids with special needs. When I meet people who seem understanding, I like taking the time to answer their questions. As parents, we have the power to raise awareness in the community and to help people understand.

Things have also gotten better with the people close to us. They used to get anxious and stressed out whenever we came over with Éli-Noam, but they’ve learned how to deal with his disability, too.

I have three goals with regard to my son: I want to make him happy, give him the tools he needs to become as independent as he can be, and make him feel there’s a place for him in society.”

Siblings

By Kenza Bennis

“Post-surgery tests revealed that Constance had cerebral palsy. Our daughter is now 3, but in terms of development, she’s at the same stage as a 4-to-6-month-old baby. She has epilepsy, can’t sit up, doesn’t crawl, and can’t speak. She doesn’t react to our presence so we’re not even sure she can see.

When Constance was a baby, we were surprised to find out that I was pregnant. My husband was thrilled, but I was a little nervous. It turned out to be the best thing that ever happened.

Our son, Tom, is 2. Of course, he doesn’t understand why his sister is always lying down or sitting. But he’s always bringing her toys, giving her kisses, and playing with her even though she doesn’t react and sometimes hits him by accident.

Not long ago, Tom realized that whenever he sneezed, she’d smile. He went and sat next to her and sneezed over and over to make her laugh. I watch him with her. He’s very protective.

With us, things are good, except the odd time when Tom makes it clear he’s feeling neglected. If I’m busy taking care of Constance, for instance, he might drop his toys, cry, or have a meltdown so that I’ll pay attention to him. He also sulks when I get back home after a few days in the hospital with Constance, which happens pretty often. When I get in the door, he’ll rush over to see his sister, but it takes a couple of hours before he’ll talk to me.

At one point I noticed that Tom had fewer tantrums if I spent a couple of hours with him just one on one. That’s why I’ll sometimes get a sitter for Constance, to give us some quality time together. I can tell that it makes him feel better.

As much as I wish I could spend more time with Tom, I don’t see any alternatives. There’s only so much time. I actually had to quit my job so that I could take care of Constance. But these are the realities of our life, and we have to accept them.”

Finding resources

By Julie Leduc

“At first, we thought that Gaël was taking longer to speak because he was learning two languages at once. I’m from Mexico and was talking to him in French and Spanish. But when he turned 3, we really started to worry. He couldn’t say more than 20 words and still wasn’t making short sentences.

A social worker from the CLSC suggested we look into a speech-language assessment for Gaël. Since there was a waiting list to see the CLSC’s speech-language pathologist, my husband and I decided to go to a private clinic. We wanted to be sure our son got the help he needed quickly. The assessment took three sessions at $90 apiece!

The SLP told us that it was very likely Gaël had dysphasia, but that a firm diagnosis couldn’t be made until he was 5 or 6 years old. We sent in a request to the language development services department at the Jewish Rehabilitation Hospital in Laval. We had to wait another six months before we were accepted. To help Gaël in the meantime, we signed up for language stimulation workshops offered by Dysphasie Plus.

At the Jewish Rehabilitation Hospital, speech-language services are free. But since there aren’t enough professionals to meet the demand, services are offered in 10-week blocks of meetings followed by a 10-week break.

During these breaks, we’ve decided to have Gaël see a private speech-language therapist every two weeks. It’s a lot of money, but our son needs the help! Fortunately, the child disability benefit we receive through the federal government gives us about $2,000 a year.

The waiting lists and fees are discouraging, but the hardest part has been accepting my son’s condition. The learning disorder institute in Montreal has been a big help. I’ve also attended meetings with other parents to talk about our experience and share tips and resources. That’s how I learned about kindergarten language classes. Space is limited, but hopefully Gaël will get in next September—fingers crossed!”

Integrating into childcare

By Amélie Cournoyer

“Our son, Gabriel, was diagnosed with autism spectrum disorder (ASD) in June 2016. He’s an only child and had never been to childcare, so socializing and communicating didn’t come easy for him. The professionals he sees insisted that we enrol him in childcare so that he’d learn to interact with other children, follow instructions, and stick to a routine.

We were lucky: it didn’t take long for us to find Gabriel a spot at a centre that provided services for children with special needs. It was a smooth transition; Gabriel felt at home from the moment he set foot in the daycare. The other kids immediately welcomed and accepted him.

It still took a couple of months for the childcare providers to work on Gabriel’s behaviour. He could be aggressive with the other kids, pushing them or pulling their hair, and would often run away. I should mention that this was during the summer, and the childcare staff was constantly changing.

But ever since he’s been in a group with just one educator, Gabriel has been doing great. A specialist comes to see him for an hour each day. She helps him with things like nap time, when he used to bother the other kids. She solved that problem by giving him headphones so he can listen to music.

Childcare completely changed Gabriel’s life—and ours! His dad and I were exhausted from taking care of him night and day. Ever since starting childcare, he’s been sleeping much better. He’s not the same little boy anymore—he’s more talkative and expressive. You can tell that he’s more comfortable around people and is better at showing affection. For instance, he’s learned how to hug his friends goodbye.

Gabriel still acts out when he doesn’t get what he wants or when he needs to be alone, and he’s still awkward about asking others to play with him, but his behaviour has improved by leaps and bounds. His motor skills are much better, too. We’re confident that he’s ready to start school. Nothing but good news!”

The importance of a good support network

By Julie Leduc

“My son has MEDNIK syndrome, a very rare genetic disease that has slowed his development. He can’t talk or walk. He needs a special walker to get around. Léo also has food allergies and cannot chew.

My wife is French. Her parents live in France, while my family is in Quebec City. Even though we’re far from our families, we have lots of help caring for Léo. My aunt Claudette lives close by and is a huge help. She takes Léo every Sunday. She’s become such an expert at taking care of him that sometimes she keeps him overnight! She makes him dance, has him listen to music, and takes him to the park. She knows how to make him laugh and he’s always happy to spend time with her. It gives us a breather and lets us refuel.

Through programs like the direct allocation program (service employment paycheque), we were also able to hire someone to take care of Léo for 20 hours a week when he was a baby. We were lucky because we found a physiotherapy student who would come up with games and exercises to strengthen his muscles.

Also, ever since he was 18 months old, Léo has been going to a daycare for specialneeds kids. The daycare workers are amazing, and our son has access to physiotherapy and occupational therapy services. It breaks up his routine and helps him open up to the outside world. It’s a life-saver. It means that we can still work and lead normal lives like other parents.

And then, of course, there’s the medical personnel who teach us about how to give Léo the care he needs. Our son is a patient at the Complex Care Unit at the Montreal Children’s Hospital. There’s an on-call nurse that we can contact at any time if there’s a problem. We can also count on the CLSC social workers for help.

Léo gets so much from everyone who helps take care of him. They each have their own way of stimulating him. I think it’s because of their support that Léo is making progress every day.”

Choosing to adopt

By Kenza Bennis

“I’ve been working with the handicapped for 20 years, and I’ve always been happy in that environment. My partner and I are gay and always knew that we’d have to adopt to start a family. In my mind, it was a given that we would adopt handicapped children.

When we started the process with the youth centre and Association Emmanuel, which facilitates the adoption of children with disabilities, we said that we were comfortable with mentally handicapped children. I should add that we fostered several handicapped children during the four years that we were a foster family.

During that time, we learned first-hand what it was like to live with a handicapped child and became familiar with the resources provided by the healthcare system. It was also an opportunity for our friends and families to be around children with special needs. They therefore weren’t surprised when we adopted Rose and Maxime.

Rose has Down syndrome. She had heart surgery when she was about 18 months old, but she’s been fine ever since and has no physical impairment. As for Maxime, he has cri-du-chat syndrome. He has delayed mental and motor development. Even though we knew what to expect with a handicapped child, Maxime’s development has been up and down and slower than anticipated.

With all of their doctor’s appointments, it was during our kids’ first few years that we had the toughest time staying organized. We managed to get through it by taking a combined three years off from work.

Things are easier now. Maxime is in a special school where he receives speech-language pathology services and occupational therapy. Rose is getting ready for nursery school and visits the speech-language pathologist at the intellectual handicap rehabilitation centre. They still have regular check-ups, but we’re able to manage because my partner works four days a week and I have a flexible schedule.

Every night, we do intellectual stimulation exercises with Rose and physical exercises with Maxime. Otherwise, we’re just like any other family. It may look like we have too much on our plates at times, but we always make things work because we’re very organized and are lucky enough to have families we can count on.

Rose is 4 now and Maxime is 5. We’ve managed to find a good balance between our family, social, and professional lives. Will we adopt a third child? Lately we’ve been wondering the same thing...”

Source : Naître et grandir magazine, May–June 2017 Interviews by Kenza Bennis, Amélie Cournoyer, Julie Leduc, and Nathalie Vallerand

Photos : (in order) Maxim Morin (photos 1,2,3), Guillaume Roy (photo 4), Maxim Morin (photos 5,6,7), Nicolas St-Germain (photos 8,9)