Who is your support system? Who helps you deal with your child's problems?

Dennis and I are pretty much alone in this. We certainly talk to the Dr when we have appointments, but nothing where we just go in to talk. Our families listen to us, but my friends aren't that helpful. I was so upset with how far behind Joe was once and was telling a friend and she said, "I know someone else who has a preemie and they don't have any problems at all. There must be something else majorly wrong with him.". Of course, that wasn't helpful, so we are no longer friends.

Mary

We're also pretty much on our own, since our families don't live close-by (my parents are 1300 miles away and Ken's parents are 100 miles away). They do support us long-distance by listening to us and talking to us about the kids, but until you live with my kids, you have NO idea what life is really like! :lol:

We do get a lot of information from all of Kayleigh's therapists about her issues, and we belong to a special needs support group that meets once a week. That helps a bit. With Lincoln we just get the support of his doctors. None of our friends even have children, never mind special needs children, so they definitely don't understand what we go through.

We don't have any sort of respite program, though. I wish we did. Ken's parents end up watching the kids during the weekend so that we can get out of the house, but they're sickly and I always feel badly about it.

Jillsers, do you get your therapy through the EIP? When Joe qualified for that, prior to being 3, they did have respite care. They also had discretionary fund that you could qualify for--they could be used for things like swimming lessons or anything else that could be beneficial that wasn't provided by therapy. Do you have any of those options?

Mary

Well, our friends have been so caring and are always wanting to help, but it's hard to help.

I have a great on-line group through the TS Alliance for parents of kids with TS. The group is somewhat overwhelming because a lot of the kids are really bad off. But, they have helped with with a lot of questions and in finding a specialist for Heather. I email one lady specifically who has a daughter very similar to mine. I've met with one other mom who has a kid with TS, but he's much more effected than Heather is right now, so it's scary to see him.

Our family is all about 3 hours away, so they aren't close enough to help out really. We have left Heather with friends a few times now. It's getting easier to do since she's been so good lately - not having any seizures.

Mary, Kayleigh is getting all her therapy through EI. But they don't have any kind of respite care or discretionary fund that I'm aware of...that's so cool that yours offers it! :nod:

Mary, Kayleigh is getting all her therapy through EI. But they don't have any kind of respite care or discretionary fund that I'm aware of...that's so cool that yours offers it! :nod:

I'm sorry. It was a great help to us. Hopefully you will be able to get some help, I can't imagine how exhausting it must be to have two kids with special needs. It is hard enough just to have two kids!

Mary