Solving Medical Mysteries
Through Team Science

My sibling has special needs: a Q&A

Introduction

Emily Glanton, a genetic counselor and project manager at the UDN Coordinating Center at Harvard Medical School, recently sat down with 10-year-old Aleah Smith and her father Chad to talk about Aleah’s experiences as a sibling of someone with special needs. Aleah’s little brother, Blake, is 7 years old and is undiagnosed.

Q&A

Q. Tell me about yourself—what is your favorite subject in school?
A.
I’m in fifth grade. My favorite subject is math. And I am going to be a doctor when I grow up. I’m going to be a pediatrician and do research at the NIH and help kids like my brother.

Q. What is the most awesome thing about your sibling, Blake?
A.
I get a lot of medical practice already, so I can be an amazing doctor like the ones at the NIH. We get to do all kinds of fun activities. There are special things we only get to do because of my brother, like going to the Paralympics. We go to Christmas parties put on by organizations like the MDA [Muscular Dystrophy Association].

Q. Have you made friends with any other kids with special needs or siblings through those organizations?
A.
Actually, a cool story is that at one of those parties, there was a girl from my class there. We started talking and found out that she has been diagnosed with Charcot-Marie-Tooth (CMT). I had no idea before that we had so much in common, because she was private about her disease. I also have made friends through the Little Miss Hannah Foundation. Hannah was a little girl with Gaucher disease whose older sister I became friends with. We relate a lot and have a lot in common. I meet other siblings running for MyTEAM TRIUMPH with my dad. I can learn from them and they can learn from me. It makes me feel better because I get to know that I have similarities to other kids.

Q. What difficult feelings do you have because of your sibling?
A.
It’s difficult feeling that my brother could die at any time. Knowing this, I spend as much time as I can with him.

Q. What do you do when you have a hard time talking to your parents about your difficult feelings?
A.
I talk to my pillow, because the pillow just listens and can’t answer back. That helps me feel better.

Q. Do you ever feel jealous of your sibling? Why?
A.
Yes I do feel jealous sometimes. He is the youngest in the family, so he’s the baby and gets the most attention. Plus he has special needs, so it feels like he gets 3/4 of the attention.

Q. What kinds of things help you deal with those difficult feelings?
A.
We go on daddy-daughter dates and my parents make sure I get alone time with them. My dad and I just went on a Valentine’s Day date, and my mom took Blake on a date. My dad and I also run for MyTEAM TRIUMPH, and we just recently did the hot chocolate 5k run, which was really fun. It doesn’t involve Blake directly but it does raise money for the Ronald McDonald house.

Q. Do you feel like you have to help your parents care for your sibling?
A.
Yes, I do feel like I have to help. For example, it can be difficult for my parents to suction him when they are driving in the care. So I learned how to do it and can help them. I think my parents appreciate when I help with Blake.

Q. Do you feel like your parents share enough information about your sibling with you?
A.
Sometimes I wish they would tell me more so I would know everything that’s going on.

Q. How is your life different from other kids?
A.
Sometimes my brother’s teachers need to pull me out of class to help them understand what he is saying.

Q. What do you wish teachers knew about your family?
A.
I wish they knew how often I have to go over to other’s people’s houses in the middle of the night when my parents have to take Blake to the hospital.

Q. How do you explain Blake’s condition to your friends?
A.
I describe what his tracheostomy does for him and help them understand that’s why he has a hard time speaking.

Q. What is your hypothesis about what your brother has?
A.
I think he might have some clog in the branches that come out of his spinal cord—not enough to make him paralyzed. There also could be a virus eating his muscles that makes it hard for him to speak and move. I came up with this question because I know a lot about him and want to be a researcher to help more people like my brother.

Additional information

Thank you again to the Smith family for sharing their words of wisdom with the UDN! To hear more from Chad the Dad, click here to read his articles “8 Things You Don’t know About the Smith Family” and “Finding the New Normal”.

The links to organizations mentioned during the interview can be found below:

Muscular Dystrophy Association
myTEAM TRIUMPH
Little Miss Hannah Foundation

You may also contact the UDN Coordinating Center with questions by emailing UDN@hms.harvard.edu or calling 1-844-746-4836.