“I hope that William will always be surrounded by kindness”

William is someone who, even today, needs support in his daily life. He can’t stay home alone, or maybe he can for 30 minutes or so. He takes his shower alone, but he has to be reminded to do so! He does well at his school, Joseph-Paquin School in Quebec City, which specializes in language disorders, because William has, among other things, verbal dyspraxia. He is always ready when the bus arrives to pick him up. He takes part in work placements in schools and does really well.

He is a boy who loves activities. He likes going to the activities at Patro Roc-Amadour, where he is enrolled every other Saturday; in fact, he wants to go every weekend! William really loves life. He is a child who socializes easily. And like any young person, he also likes to just hang out sometimes.

I am… quite protective. I worry about the future. What will happen when we are no longer here? I have always been very involved with my three children. When William was a child, my spouse and I found that daily life was complicated, with two full-time jobs. The exhaustion… My spouse had the higher salary at the time and I wanted to stay at home. Eight years after leaving my job, I returned to the labour market in 2019, when I felt that William was ready. When he comes home from school, he is alone for about fifteen minutes until his brother arrives. It’s manageable!

I wouldn’t say I’m a controlling mother, but there is a kindness in me that makes me constantly check to make sure my children are okay. I tend to define myself first and foremost as a mother. When William started going to respite care, as a couple we were able to make time for each other; we needed to reconnect. Eventually, after everything else, I managed to make time for myself. Just Julie.

There have been several diagnoses. During my pregnancy, a kidney problem was detected. The first surgery, on the kidneys and bladder, took place at four months. William was often in hospital during his first five years. A geneticist performed a karyotype; the diagnosis of chromosome 10 syndrome was the most difficult to receive as a mother, because it is a condition with no possible improvement. It is a very rare syndrome. We knew that William would not be very tall, that the kidney problems would persist, that intellectual disability and language disorders would be a factor. On top of all these issues, he also has verbal dyspraxia.

When William was a child, his behaviour was problematic. He was a handful and demanded time and energy from me, my husband and also his two brothers.

A mother convinced me of the benefits for our whole family of enrolling William in his first respite program. I had never done any research in this area because in my head, I wasn’t ready: taking my child for a weekend to a place where I didn’t know anyone was not an option! So the first time, letting go was very difficult for me. Today, respite care is part of William’s and our routine. It’s on our schedule and we plan accordingly.

Not much! His daily life is the same. On the other hand, it was anxiety-provoking for us! We had to take all kinds of steps related to the transition to adulthood. We started to find out more around the time our son turned 17. There were forms to fill in, but as we delved deeper, a ton of questions emerged. All of this was unfamiliar to us… It was scary!

We focused on the applications for financial assistance. It seemed the “easiest” part, but there were all kinds of hurdles. We should have done all this much earlier, had we known. It would have made things much easier for when he turned 18.

With William’s last-resort financial assistance, we were eligible for legal aid. A lawyer helped us navigate guardianship for a person of legal age. Today, William is 20 and guardianship is in place. A testamentary trust remains to be established; it’s in the works.

Opening the bank account! It seems simple, but it’s not! If only I had known that the bank account had to be opened before the child turned 14… When we started the process, William was already 17. The banks refused. But to receive social assistance, there has to be a bank account in the young adult’s name!

Fortunately, a notary directed us to an online bank, which allowed us to complete the process, after many calls, time and energy. I must say that, in general, the government gives us a lot of information and takes the time to answer our questions.

For the process of guardianship of a person of full age, we had to go back to a traditional financial institution to open an account ex officio.

It’s been a few years. We’ve always been inclined to seek help, especially from the CLSC. During a difficult phase, a CLSC social worker told us about a program for caregivers offered by the Monastère des Augustines. Those two days, when William was 15, were a real eye-opener: “We are caregivers!”

The site’s creator, Boris Mayer-St-Onge, and I were on the governing board of the same school for a few years. When it came time to make the arrangements for William’s transition to adulthood, I told the school how difficult these steps were and I gave them my contact details in the hope of exchanging information with other parents of children with special needs. Boris and his wife Brigitte then contacted me. I thought the idea of a website for caregivers was an excellent one!

I then became involved in the advisory committee for the reading of the various contents of the platform. Becoming involved was quite natural, simply because I found the site essential for parents.

Perhaps one dealing with a bank account, but I would say above all legal guardianship! What a big step! All these procedures mean stress, time and a burden on top of everyday tasks. Parents will save a lot of time and avoid a good deal of anxiety. With the timeline tool on the platform, they can prepare for the different stages.

Yes, that’s the crux of the matter. All the parents who were caregivers did their research on their own, without sharing information. The Parent aidant | Cap 18 ans website covers all the essential topics related to the transition to adulthood for children with special needs. But it’s not just the transition itself, it’s also what follows. We will soon have to make arrangements for a testamentary trust. The details of this process are on the website, so I will consult it.

Even today, the transition from childhood to adulthood involves a lot of administrative procedures and forms. Over and over again, we have to start over and prove that our child has a disability. We are moved from one system to another when there should be a common thread between childhood and adulthood. Why can’t the transition from childhood to adulthood be more straightforward? What if there were less paperwork, fewer documents, fewer forms and fewer supporting documents?

We love camping! With William, it’s not possible to go far because he finds travelling by car difficult. So we camp in different places, not too far from home, or close to our families and friends.

In addition to the Patro Roc-Amadour summer activities, William will also spend 5 days and 4 nights at Camp O’Carrefour on Île d’Orléans; while he is there, the rest of the family will go on vacation… a little further away!

The first word that comes to mind? Anxiety. What will happen to William when my husband and I are no longer here? All these thoughts are stored away in my head, in a little box. When and only when it is necessary, I open it and so many emotions come flooding out…

The second word is kindness. I hope that when William leaves home (in several years’ time, we are not yet ready for that) to live with a foster family or in a supervised environment, he will be surrounded by kindness forever. That is my greatest wish.