Interviews

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Hi everyone,

Last week I talked about my goals in the special needs community this year, so I wanted to start this week writing about an interview that I held with both a parent and sibling of a special needs adult and their experience as caretakers. This interview was extremely enlightening to me because I was able to understand what it means to help a special needs child throughout their life and how to do better advocate for them. I've condensed the interview into the most important questions I asked and their answers. I've kept the interview anonymous (I can't include the recording or pictures) to respect their privacy, but I hope you will be able to gain as much knowledge as I have from this interview. This is also posted on the Interview section of the blog.

1. How did you discover that your child was special needs?

We discovered that my child was special needs from the very beginning when the doctor told us, and it was something that made us stronger. We knew she wouldn't have much mobility outside a wheelchair, but I and my wife were ready to take care of her no matter what.

2. What are some difficult decisions that you had to make as your child was growing up?While my child was growing up, it was very difficult to make care-related decisions. Every morning, it's a different situation as one day can look different from the next. The future of our child was very important to me and my wife, so we made the decision to be there to fully support her.

3. What are the challenges you face as a parent to a child with special needs?

Again, as she is in a wheelchair, it's quite hard for her to be fully independent. Taking care of her is a challenge, but that's where love and patience play a role. Rather than seeing it as a responsibility, we see it as a way to help and love her. 

4. Some days are more difficult than others, how do you as a parent stay motivated? That's very true. Some days are more difficult than others. I think remembering the love that we have for our daughter and staying patient is most important. It's okay to feel tired some days, but coming out stronger and being there can make a big difference.

5. What would be some advice that you would give to new parents of special needs children?

Perseverance and hope are two big principles when being a parent. It's a difficult role to take on, but every child is different, and remembering what works for yours is of the biggest importance.

6. As a parent, what kind of resources were most helpful for you to better take care of a special needs individual?

When she was younger, we didn't use much technology, but there are all kinds of resources online now and more.

7. What was your experience growing up with and acting as a caretaker of a special needs individual?

When I was younger, it was very different to have a sibling that required extra care and attention. It made me be a more responsible individual that I carry into my life as an adult. In the future, I hope to continue taking care of my sister.

8. How can we as a community help parents and caretakers of special needs children?There's a sort of stigma that surrounds the special needs community. Eliminating that barrier and also taking action and steps to accommodate for caretakers is I think the best way to help. Honestly, It'd be extremely helpful to help caretakers through volunteering and service.

9. What changes need to be made in society in order to better accommodate special needs individuals? In what ways can we advocate for them?

That is a great question. Growing up with a sibling who has special needs has made me understand how hard it is to find accommodations and all the paperwork that comes with getting her what she needs. Making this process easier so that we as caretakers can focus on getting her the help she needs is of great importance. Advocacy can start small, and all it really takes is speaking up and staying informed of how to make this process better.