We aren’t really sure where else to reach out for any tips, and we haven’t met anyone like us! Our daughter was diagnosed in August of 2023 at 8 years old. Now our son, who also has Down Syndrome, was diagnosed Just 2 weeks ago at age 14. The chances of this happening are slim, and we have been living in a whirlwind.
Does anyone else have any siblings who were diagnosed? Or even anyone who has a child with special needs that was diagnosed? Their experiences are 100% different and will be handled differently. My husband and I are just looking for any guidance in what is to come for our future.
I have had Type1 for just over 60 years. My sister is 3 years younger than I and has downs syndrome but does not have Type1 - however our mom’s best friend’s younger son has both. Our mom died several years ago and it’s been a while since I have spoken with her friend but last I heard her son was doing well, living with her and working part time at about 60 years of age.
My sister receives disability benefits and has lived in a supervised apartment with a roommate since she was about 40 years old: our parents wanted very much for her to be in her own place rather than have me care for her when they were gone (I am her legal guardian), and they found a law practice that specializes in disability law to guide them through the process.
She and her roommate both have caregivers who take care of things they are not able to do on their own, and my sister worked part time until a year or so ago, when she stopped due to physical limitations.
I’m getting a bit off track as far as diabetes but all that is to say that she does get regular medical visits and dietary and exercise guidelines, which staff follow. These are included in her service plan, and I “imagine” similar guidance - including specific instructions on what to do when - would be included for diabetes management, similar to a 504 plan for school.
I can reach out to my mom’s friend and see if she might join the forum to get in touch with you but I don’t know if she would be able.
Our mom and her friend connected with other moms at the special ed school the kids attended and they formed very close bonds that remained in place long after the kids were out of school - my mom was 94 when she passed and the friendships remained in place. If you connect with other parents whose kids do not have both issues, you may be surprised at the level of support you find in the community of parents with special needs kids.
Thank you so much for all of that! We have been very fortunate with being close to a community just for people with Down Syndrome in our area. There’s an amazing place called GiGi’s Playhouse that is designed for infants all the way up to adults. We’ve been able to attend a lot of the teen programs for him and he is loving it. We just don’t have anyone much older than him to reference! Adulthood is something quickly approaching, and I liked hearing about your experience. Thankfully his 2 sisters love him more than anything and will be there when we can’t, much like you. It’s just been a whirlwind entering the world of T1D and then once again with a special needs teen. I wasn’t sure if I’d find many people with experience, but all aspects is so helpful to us.
Your kids docs have probably mentioned this but if they didn’t consider talking to your doctor about screening family members who haven’t been diagnosed for T1D autoantibodies. BreakthroughT1D has good post about screening with links to more details and how to have it done for free.
One thing we found with my sister was - like most kids she came to a point where she wanted to do what her older sibling did:
when I went away to college she went away to “college” too (I’m not sure I can mention the name here but if you want I can send you a PM with the details once you’ve been on the forum long enough to receive them). It was not a college per se but a program that offered residential and vocational training for people with her special needs. After that, while she understood she couldn’t be totally independent, she wanted a place of her own rather than living with our parents - or with me.
I hope I’m not speaking out of line but
while his siblings may be more than happy to care for him when the time comes, it might be good to have a Plan B or C in place for further down the road. One or both may have opportunites to move or travel with their career; the responsibilities of marriage and children of their own may make it harder; an accident or illness may make them unable to care for themselves much less someone else, at least temporarily; or their spouse or child may come to need special care.
Apart from any of those things, I know of one sibling who is in her 70s and caring for her brother, and is simply finding it more challenging to do now. It might be good for parents and siblings to plan for the long view, even if they are sure of what they will do when the time first comes.