The Siblings’ Perspective – Life with GFPD Patient Ambassador Archer

A few thoughts from Ashley, Archer’s Mom: I have to say I think Archer is really special (well for many reasons) because I feel he unites his siblings. They are all very compassionate and sweet with him. They are also very understanding of the demands of taking care of him; I think because they were all fairly young when he was born. They went to many early appointments before he was diagnosed, and I think it’s just a regular part of their lives. I do get the sense they are very proud to have Archer as a brother, and they get very excited at his accomplishments.

I think that the positive side of having a sibling with PBD is that my older children are living a very special childhood, despite its share of struggles. They see that although Archer has many challenges, he is still vibrant, loving, and happy. They see him fall and get back up. They see he needs lots of help and patience. They see how much we appreciate and value each day because the future is unknown. I think ultimately they are growing in compassion for others because they see that having “special needs,” is only a small part of a human being. I feel sure as they grow up they will appreciate the unique perspective on life that having a sibling with PBD has given them.

Q & A with Archer’s Siblings:

Sophie – age 14 | Lydia – age 13 | Madden – age 11

What is the biggest challenge in having a sibling with PBD?

Sophie: He has for the most part UNLIMITED energy, and it can be hard to keep up with!

Lydia: He has lots of appointments, and it stresses mom out. Also, we can’t have a two story house.

Madden: When he’s mad and hitting stuff and you’re trying to calm him down.

What is the best part of having a sibling with PBD?

Sophie: The best part of having a sibling with PBD would probably be all of the opportunities. Most teens don’t know how to take care of a child with PBD.

Lydia: Archer’s really sweet and he’s fun to play with and read books to. Also, we get to go to the GFPD conferences and family meet ups.

Madden: Getting to go to the GFPD meetings.

What do you enjoy most about the GFPD conferences? What do you look forward to at this year’s conference?

Sophie: I really enjoyed meeting the families and the kids who have PBD. There’s not a lot of families near us who have kids with PBD, so it’s really cool meeting all the kids.

Madden: Getting to see friends and other children with PBD.

What do you love to do with Archer the most?

Sophie: Snuggling.

Lydia: It’s fun to read him books. He always gets so excited; it’s cute.

Madden: Snuggle with him.

How do you think having a sibling with PBD has changed you? What unique perspective do you have?

Sophie: I’ve seen people be very intolerant of people with disabilities in public school. But it’s different for me because I’ve learned that every child with a disability is very unique and different. I think my unique perspective would be that we were the ones that were able to have Archer in our family, and that’s very special.

Lydia: I’m more tolerant of noise. Archer can be very loud.

Madden: I think I have more patience.

What would you like to see for Archer’s future?

Sophie: The things I would like to see the most would probably for his eyesight to stay the same or improve. I’d also like to see his balance get better and not deteriorate.

Lydia: I’d like to see Archer be healthy and take care of himself a bit more.

Madden: See him be able to use the bathroom by himself, and have a long life.