katrina4384
Dec 1, 20213 min
1. What is your name? Christopher Tabor
2. What is your relation to the child you are a caregiver for? Stepfather
3. How old is your child with JHD, and how old were they when they got tested? Autumn is 15 now but was 11 when we got the diagnosis.
4. How old was your child when they started showing symptoms? It’s hard to say, so many of Autumn’s early symptoms were behavioral. At least a year or two prior to her testing
5. Who did your child inherit JHD from, Mom or Dad? From her father.
6. What were the first signs that made you think your child may have JHD? Trouble in school, mood changes, a bit of clumsiness.
7. Did you notice any sort of changes in school before your child was diagnosed? Her grades were going down, and her teachers noticed her performance was dropping. They brought it up at parent-teacher conferences.
8. Did you notice any behavior changes in your child around the time of their diagnosis? Autumn would get really angry or refuse to get ready for school.
9. How is your child’s behavior now vs. when they were first diagnosed with JHD? Surprisingly, a lot of the anger and behavior stuff has gone away.
10. What are some of the biggest changes you have seen in the child since she started showing symptoms? This is hard because sometimes you don’t notice the progression when you see someone every day. It’s only when I go back and watch old videos that I realize how incredibly quickly everything’s changed.
11. Did you know what JHD was before your child was diagnosed? I knew what HD was, but not specifically JHD.
12. What was the testing process like? We did it while in Iowa for the Kid’s HD Study, so probably easier than some other families since the doctors were familiar with Huntington’s Disease.
13. What professionals helped you and your family through the genetic testing process? The staff from the Kid’s HD study, and Dr. Nopoulos in particular.
14. What stage of JHD was your child in when they were diagnosed? Early, I think.
15. Does your child have the help they need at school? Our school district has been great at working with Autumn, especially when I hear how difficult IEP’s can be for some parents.
16. Are you part of any support groups? (online or in-person) Maybe a Facebook group or two? I’m not very active in any of them.
17. Do you have any other children at risk for HD/JHD? My stepson, Logan, is potentially at risk.
18. How do you explain JHD to people? I don’t really, at least not as much as I should. I find it hard to talk about, even to people I’m close to.
19. What is your biggest struggle as a caregiver for a child with JHD? Having patience is hard with parenting, but I try always to tell myself when I’m getting frustrated that Autumn is doing the best she can.
20. If you could give any advice to a new caregiver, what would you tell them? I don't know if there is any advice I could give that would possibly help. If anything, it would be to just do your best too and cut yourself slack when you inevitably fall short – the only other people who can understand what this situation is like are those who’ve been through it.