Darian - Arm & Brain!

[Anita Hammer]

Darian had a real meltdown today. Pretty rough on all of us. She sees her Psychologist tommorow. We're having real issues with the Bi-Polar Disorder and her Jealousy of her sister. It's escalated pretty badly.

She starts therapy Monday - so both kids are looking forward to "playing with Janet". . . . hopefully that'll go well!

If therapy doesn't work - the next step for her is Botox Injections along with therapy - which I'm hoping we won't have to do because Darian is petrified of needles and bloodwork is traumatic let alone an injection into the muscles.

I'm going to have the TCH docs check her out at the OH picnic in June! Hopefully they'll say what we've been doing is correct. That worries me - I haven't had much luck with docs around here - so I don't really trust them. The doc Darian saw was an Orthopedic Surgeon and he seemed to "know his stuff" - but it still bothers me.

I'm also going to try and check into SSI for Darian due to Bi Polar Disorder - and possibly try again for Cassidy. Maybe, Just Maybe if I could get that to go through I might have a chance at staying home.

Any ideas on where to start for this?????

Thanks!

Anita

[TNT1999]

Hi, Anita. I don't know what to say except that I'm sorry that you have to go through all of this. I hope that you get good news about Darian and that she only needs some therapy (and perhaps splinting?). It sounds like you're going to have some difficult decisions to make in deciding what's the most important thing to do for her. I'll keep you all in my thoughts. -Tina )

[TNT1999]

Oh, also, regarding SSI, I wonder if there's some way that you can have someone look at both of your childrens' applications together and to look at the whole picture. I don't have a lot of SSI advice b/c we never applied after we foundout that we didn't qualify based on income. Do you have early intervention now? The svc coordinator might be able to help get you started or the Dept of Social Svcs -- where you would have a case worker. There are some great resource #s on the website http://www.nichcy.org then click on State Resource Sheets and select your state. There's a listing of #s for every state in the country. Even if SSI doesn't workout for you, you should be able to hopefully find a program that will assist you with the medical expenses that the insurance doesn't cover. Some states have secondary insurance that's free or with a varying co-pay. We have medical assistance (medicaid without the income requirements) that pays for the co-pays that the insurance doesn't cover -- for dr visits, therapy, prescriptions, etc. (as long as the provider accepts medicaid). I believe it will also cover the full cost of therapy when the insurance benefits end for that too. I am also inquiring about other things, like a program at our local children's hospital that has a fund of up to $1,000 / year / child to help cover things that insurance doesn't cover and I'm hoping to get alternative forms of therapy covered (for ex. Kindermusik, yoga therapy, massage therapy, hippotherapy, etc.). Anyway, what I have found is that there is a lot of assistance out there and there are a lot of people who want to help, but it just takes a lot of time and persistence, phone calls, letters, etc. I'm sure that's difficult to come by if you work during the day though. Anyone who can help you with making phone calls? (someone who is assertive and persistent if possible) Again, what I would do no matter what you apply for is to try to get them to look at both of your children together and not just as individual cases. Oh well, sorry this is so long. Hope it helps. -Tina )

[karen r]

You might want to e-mail Kathleen Kennedy who is the SSI "expert" for bpi families. She's in Iowa but was the person who arranged for the SSI hearing in Washington DC back in '99:
Kathleen_Kennedy@mail.ccs.k12.ia.us

Have you consulted your state "Bureau for Children with Medical Handicaps." That's what it's called in Ohio. You could call your state board of health and they could probably help you (might take some time and a number of phone calls).

You might also call your local Easter Seals for info. on SSI, etc. They're usually well connected and can give you names/phone numbers.

Best of luck, Anita. I'm looking forward to seeing you and your family in June.

[Anita Hammer]

Thank you to all who replied. I have wrote down all the leads and am going to spend the next 2 weeks checking into them. Hopefully something will help!

We found out Saturday that Darian is also hearing voices. This is common with Bi-Polar Disorder. . and I guess the difference between these voices and those that schizophrenics hear is the mood swings and the fact that they don't "act" on what the voices tell them.

This was very shocking to me - she has never said anything to me. She broke down on the way home from her Psychology appt and told me she was afraid to tell me about the voices for fear she would get into trouble.

She is openly talking about them now - so hopefully we can help her to "quiet" them!

Again - thank you to all!