I first got elected to Parliament when my son, Jaden, was 9. Now 25, Jaden has autism. He is non-verbal and has difficulty navigating the world around him. He loves dogs and also enjoys concrete things like sorting books (when he was in school, he worked in the library), making puzzles and Lego; but he has difficulty with the more abstract parts of life – things like articulating pain and understanding danger. We don’t let him leave the house alone because, even though he understands to look left and right before crossing the street, he doesn’t fully understand that he will get hurt if a car hits him.
There is this 24-hour awareness needed about what is going on because danger is always a risk. When Jaden was growing up, we were always worried that he would walk out of the house in the middle of the night. That fear became a reality one early morning at the cottage when Jaden was a teenager. We were awakened by a neighbour who found Jaden on the beach and walked home with him. Some people don’t really understand that the worry is constant. One of our close friends once said, “it must be nice to get a babysitter paid for”, when one of the respite workers came in. That lack of understanding of your situation can be lonely at times for caregivers, but overall, we experience way more joy and bonding with Jaden than we do loneliness. Something I think we all experience, however, is the feeling of being overwhelmed. It is necessary to have that reprieve from time-to-time so that you can recharge and continue caring for your loved one.
People often comment on the synchronous flow between me and Jaden – something that has developed over the past 25 years. As a family, we have all developed a sort of natural rhythm with Jaden that most caregivers have with their loved ones. Caregiving has become hardwired into our lives and our approach. We are much more tuned into his wants and needs from years of working to understand his non-verbal communication. That attention to Jaden’s non-verbal cues allows us to get into his world instead of trying to constantly drag him into ours. Interestingly, I’ve found that what I’ve learned from this approach has been helpful in all of my relationships.
As a caregiver I also think about Jaden’s relationship with his sister and the pressure she must feel to care for her brother. Although she has never known a life without Jaden, and she would say that has impacted her very positively, I constantly think about what will happen and who will care for Jaden once his mother and I are gone. That burden cannot fall entirely on Jenae.
As policy makers we need to think about what the future holds for those who don’t have siblings or other support networks. We must build a supportive environment in society that is genuinely compassionate towards our loved ones rather than one that simply manages them in an institutional type of system. As family, we want Jaden to thrive and be able to contribute to a society that looks at him as a human being with real potential rather than a burden. That is why it is so important for us to share our life experiences as policy makers, because most people have never experienced caregiving for a child with a developmental condition.
To young parents who have recently received an autism diagnosis for their child, I would say that this may not be the life that you mapped out or imagined for your child. But eventually, you’ll discover that you don’t celebrate any less than you would for any other child. You just celebrate different things.