My son was diagnosed at a little over a year old. He has constantly been up and down with blood sugars. We have tried pumps and the CGM system. Pump gave us horribly inaccurate readings and the CGM was sometimes almost 200 points off. He can hit 40 and still be up running around. He is suppose to start school this coming fall but with how up and down he is, I can’t imagine any school being able to keep up with him. His doctor also agreed that he would spend more time in the nurses office than in the actual classroom. I have been looking into the idea of homeschooling just until he is able to handle his ups and downs by himself, but not sure that’s the best idea. Just curious if anyone can shed some insight on this…
I’m in the same situation. 6yr old was diagnosed at exactly 5. Thankfully we were already homeschooling. she was just too young to calculate and treat herself. This year I was excited to send her to a private school two days a week but after getting my hopes up, she was rejected because of a lack of staff (she would practically need her own personal aid with how up and down he is.)
I spoke to a young man with T1 today(diagnosed at 11 months old!!) Who expressed the same problem of spending most of his day in the nurses office. Not only was it a giant bummer, but he ended up in special ed because of the stigma and not being able to keep up with class work. I’m sure some kids do fine in school this young, but I would hate for yours to end up in a permanent rut when in just a few years, he will learn enough to treat himself on a normal day.
I’ve been in the homeschool community for several years and would be more than happy to help you with resources etc. I’ve actually been searching for other T1 homeschooling parents. I know it’s a tough choice but I feel thankful to have the choice and a great hope that as she grows, more doors will open.
There are great programs that make it easy to transition into public school when you are ready. Start by checking out the k12 programs in your state. Tons of teacher support online program that is free and run by the state schools.
I am a public school teacher and a type 1 diabetic. I have had students who were type 1, so maybe I can shed some light on the process. You would need to let the school know about your sons medical condition. They will set up what is called a 504 plan. It is basically a plan set up with administration, counselors, classroom teachers, the nurse and anyone else who would have daily contact with your child and a need to know how to care for your child. All adults would be properly trained, and yes the nurse would be your child’s new best friend! Your child would be serviced under special education. Special education is a broad spectrum. My son is serviced under special education for speech. The goal of school districts is for each child to be part of the general classroom as much as possible. I hope this helps!
Have you ever looked into a diabetic alert dog? Yes they are very expensive but this would be another option. They are service animals so it would be allowed to go anywhere. Even if you decided to home school the dog would be a help to you at home. In time if you want your child to try going to school the service dog could go too. See what your doctor thinks and do some investigating.
We homeschool, but had already made that choice before our T1D son was born or diagnosed. I still work in my professional career, part-time a few days a month. It got more difficult finding childcare once he was diagnosed so now I am home full-time, but that won’t be forever. Diagnosis was a huge lifestlye adjustment! We were already involved in the homeschool community and a support group for 3 years before his diagnosis at age 6. We finish his first grade work in 3 hours/day, 4 days week, with catch up on the weekends. We enjoy doing co-op classes with other families as I am always in the building, but don’t have to be in the same class. If you want immediate support and help starting out, you could check into Classical Conversations. Private and charter schools aren’t an option for us because of the staffing issues you mentioned. Public school isn’t really either because a nurse is only there 1.5 days/week…but when he gets older and can do more solo more opportunities will be available. They are only young once…and honestly, kindergarten doesn’t have to be more than lots of reading, trips various places, and outdoor exploration. Library programs, kids museums, a sport if he/she is interested, etc.
There are many very young children with the same problems discussed in Facebook groups Some of those groups have thousands of members, and there is much support given there. The Moms are very good about replying. You will get much more support and great suggestions there.
Try the following group on Facebook:
“Parents Of Children With Type 1 Diabetes”
Thanks so much for everyone’s response! Reassured me on my decision to do homeschooling until he is able to fully manage it on his own. I would hate for him to be dealing with his sugar highs and lows, then kids constantly asking him why he had to leave so much I already have an application filled out, I would love some help finding homeschool groups to do stuff with and allow him to make new friends. I’ve looked into a diabetic alert dog and that is something I would love to do more research on. Only downside is we already have 2 small dogs, so I’m not sure if 3 dogs would be doable.
Would love to talk more about the homeschooling group’s and trying to find more families with Type 1 to start meeting up with. Hard doing things with parents who don’t understand what it’s like to have a child with type 1. Be nice to have others to talk to!
Thanks so much everyone!