Child Spotlight: Drew & Vincent

 

1. Please introduce your child

My son is Vincent! He is four years old, and has a Micro deletion, 3q13 etc he uses a wheel chair, needs lifting, support etc

2. What were your thoughts when you first found out your son was going to receive a diagnosis?

I wasn’t too sure what to think at first, the doctor who we were seeing at the time suspected some underlying conditions (due to low muscle tone and poor head control) and it got me thinking they could be onto something due to the small ongoing issues his mom and I were seeing…

When we received his official diagnosis, it didn’t really change anything for me, he was still the same little guy to me and I was going to raise him no matter what.

3. Have you ever been at work or elsewhere at a time of emergency?

Yes, more than once… nobody would like a call like that but we learn to adapt. I am a mechanic local here in Edmonton, a few times I’ve been out of town during a call from my wife too.  Rather quickly you have to line up family to watch one child while your wife goes by ambulance to the hospital due to medical issues with the other child.  While still at work I try to do my job but the whole time you’re thinking about being there and how you could possibly be helping.

Its memories like trying to find parking at the local university hospital with a ¾ ton (that doesn’t fit in the parkade), wife and child have been there since early morning and the one place you know your truck fits is full… I swear I could write a book on the inconveniences I have ran into upon some of the hospital visits.  Then COVID hit and parents had to really learn to adapt with only one caregiver being allowed to stay with our son at a time, this was a new challenge being we also had a new baby at home.

4. How has having a child with a disability changed you as a parent or made you the parent you are today?

I think it has really taught me a lot, especially as Vincent gets older and bigger and more equipment is needed, I am always learning.  Vincent’s disability became more apparent to me once we had our second child, Violet…I try to be as open as possible to anything that comes our way and what he might need.  I am probably more opinionated now and quick to fill someone in on how those with disabilities don’t have the same access we all do or enough funding or coverage for basic necessities.

I believe we all need to do better, I know before Vincent I didn’t give much thought to how that snow pile in front of a curb cut was such a huge deal or the electric door opener at a store not working would create such an extra obstacle for a disabled individual. But now, if there is a button I try it, I try to clear the snow, and notify the building staff whatever the issue may be.  Think of it if you were in their shoes, just a small task can be made more complicated due to our world not being informed on how they can help improve accessibility.  Never be afraid to speak out and tell someone of these issues, it will make difference.

5. What gaps in the system have you noticed?

As soon as you put the label ‘disability’, ‘special needs’ or ‘accessibility’ on something the cost jumps through the roof.  The cost for equipment is ridiculous, whether it be simple accessories, a wheelchair or standing frame, costs can range anywhere from 3k-20k plus!  We are fortunate in Alberta to have AADL (Alberta Aids for Daily Living) which will cover some equipment costs, but it is very specific and we always pay an annual fee and often they don’t cover the type of chair we deem appropriate for our child. Ie. They would only cover a 70lb wheelchair (non motorized) that would double as a boat anchor for our 3 year olds first wheelchair.

6. What is the hardest part about being a disability parent?

The hardest part is not being able to truly relate with other parents about the hard days, the sleepless nights because of seizures and fear of if its going to be ‘the big one’, are we going to have to call an ambulance?  People like to pretend they get it and know the mental exhaustion, but they don’t. There’s always so much extra running through our minds, do we need to go for another dreaded EEG? Do we need another medication increase?  And let’s not forget one of my pet peeves, is our neuro doctor still on holidays??

If you aren’t a family with a disability in your life it can be hard to understand what a disabled child goes through. However, I can appreciate when people try to be open about it and ask questions.  Communication helps.  I don’t like when people ask ‘What’s wrong with him?’ But I do like when someone wants to say Hi!  Say something like what’s your name, how does he like these wheels?  Don’t whisper to your child ‘come over here we need to give them space’, that’s not necessary, I will gladly talk to people who are open to conversation.

I really believe it weighs on people how a small part of their day went when crossing paths or being around new people and their reactions to your child who has disabilities. Children with disabilities are not senseless, they have feelings and I believe Vincent can tell when someone is unsure or nervous around him.

7. What is the best part about being a disability parent?

I like to see Vincent succeed, whether it be big or small achievements all the wins are awesome! From crawling to sitting up or getting super excited when we go for truck rides (floor the old Duramax)… all the wins big or small are awesome and make the hard days easier.

8. If you could give any advice or guidance to a fellow dad receiving a new or similar diagnosis, what would it be?

I was told by a neuro doctor during an overnight stay at Edmonton Stollery, “short term pain for long term gain” during the recovery from Vincents skull surgery. It resonated with me, yes it was what seemed like a big set back or a painful time, but we were looking forward to the future, a little pain and a few nights staying at the Stollery, but that would make for a better future for Vincent… ‘Short term pain for long term gain’.

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