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Disability Parenting: My Experience So Far

Oct
01

Disability Parenting: My Experience So Far

woman leans agains black wall, wearing cream coloured crewneck with an illustration of mother and child walking down a path with the headline "my journey matters"
Photo by Haley Erdegard

When our pediatrician first suggested pursuing an autism diagnosis for our son, I was floored. It was such an overwhelming time for me as a young mother. I didn’t know the first thing about autism, or where to turn to learn about it. That was five years ago now. We aren’t far into the journey, but I’ve learned a lot in that time. In honour of National Autism Awareness Month, here are a few things I would love to share with you.

The Biggest Struggle

For me this has been knowing he will face more adversity than the average kid. Of course, everyone goes through challenges, and there are difficulties for even the most privileged among us. But when I see my son trying to communicate and it’s just not coming out, or people don’t have the patience to wait, it’s heartbreaking. Knowing he is far more likely to be bullied in the coming years is also a tough thing to accept. I understand that these might sound like silly worries to another person, but for me, it’s definitely something I am bracing myself for. I hope that he will be respected and appreciated for exactly who he is.

The Best Surprise

This has definitely been the acceptance I see amongst my family. My other two children are far more compassionate towards others, and that is always the first feedback I hear from their teachers and community. We have richer, more diverse discussions at home. My husband and I have become much more open to humans of all kinds as a result of this experience. Do I wish we had just been those kinds of people from the outset? Of course I do. But the growth we have made through this journey has been beautiful, and I know we wouldn’t be the people we are today without it.

Photo by Haley Erdegard

What’s helped the most

There can’t be just one answer for this. The first thing is learning the stories of other families and individuals who have been affected by a disability. When people are willing to open up and share their stories, it makes your own life seem so much less complicated. You can weave little pieces of your own situation into theirs, and it can give you insight to a way forward when the answer may not have been clear before. Sharing your own failures and successes can also help someone learn from your mistakes and find the information they need. It’s such a beautiful thing!

The second thing is the therapy teams we have had over the years. We’ve been exceptionally lucky and have attracted exactly who we needed when we needed them. I can honestly say that when you are working with the right people, you are assured to see growth in your child and family. We’ve always had teams that fully believe in our son’s abilities and have championed him towards things we weren’t sure were possible when he was diagnosed just five years ago.

What I hope changes in the coming years

From our experience, the school system is really lacking. Again, we’ve gotten really lucky and have always had great teachers for our son. However, I can’t imagine the heavy work load they are carrying every day, year after year. It’s inevitable that if we continue to rely on the current system, the people involved in it daily will crash and burn. Their classrooms are over crowded, their funding is insufficient, and the range of needs in their classroom is extremely broad.

I don’t know what the right answers are, but I think it’s clear that schools need more support. So far our son has been placed in a regular program because there isn’t another option that feels like a better fit. While there are some great advantages to this, it doesn’t always feel right and we are constantly waiting for the other shoe to drop. I have so much gratitude for the teachers we’ve had on this journey, but I also wish there were better programming options to support both them and the kids in their classrooms.

When it comes to disabilities, I wish everyone knew…

People living with disabilities want to be included. They’re eager to share parts of themselves and be social, even when stereotypes suggest otherwise. Communication is often one of the biggest challenges disabled people face. Caregivers, siblings, and those close to people within the disability community know this all too well. If you are willing to be patient enough to get to know someone, their personality will shine through regardless of if they can or cannot communicate verbally. We are always communicating with one another. It’s up to each of us to be better listeners.

— Kathy

The apparel featured in the images above are from The Inclusion Collection. This collection is a collaboration between myself, and The Branded Good. 100% of net proceeds will be donated to AdaptAbilities. A local nonprofit serving youths and adults with visible and invisible disabilities.





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2 Comments

  • I can relate so much to this. My son has always been inclusive , with EA support. ( which was not just easily handed to him, it’s something we fought for in the earlier years) . This year he is in Junior High , and he now has to travel to a different town for school , just to be in a program that will be best for him. So he’s in an entirely different community, without the peers he grew up with , just to have the support he needs. Thankfully the school and its program are AMAZING !

    Reply
    • I’m so happy for your family that you’ve found a program that works! But yes, it’s so unfortunate that there isn’t more accessible programming available. It would be amazing if he could stay within his community — but it sounds like it’s working out well!

      Reply

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