Trying To Find A LKS Support Group

I was pretty excited today to learn of a Landau-Kleffner Syndrome support group. Turns out, there are only 5 members. I know it's a rare disorder, but c'mon people! There's got to be something going on out there!! But at least it is a starting point.

But then it made me wonder. What if there's not? What if there are people going through the same thing as me without anywhere to turn for advice, reassurance, and most importantly - support and encouragement? It makes you kind of start to put things in perspective and realize why you may have been given a specific deck of cards in the first place. Is this the point where I need to step up to the plate and instead of searching for something, actually DO something that can help other people? And if so, how and in what capacity?

I do know that if I knew then what I know now, a lot of things would be different and I need to figure out a way to let parents know how to force the system to work. I've said it before that you have to push-push-push, and I don't mean lightly.

Unfortunately, my request for additional respite hours (I get 4 hours per week) was denied due to budget cuts. I was really looking forward to another 4 hours added - as I was told would happen earlier this year - but I guess need to be happy with what I have. My case worker today told me that hours have been reduced for many, which makes me very sad. Respite is key to keeping your sanity. At least for me. When you are dealing with a special needs child - and a very demanding one - you really do need a chance to remove yourself and recharge. They will re-evaluate again on her 4th birthday and hopefully I'll get an increase in hours then.

I was also given the contact info for another school district so we can do an inter-district transfer. Hopefully they will be more responsive than what I've been dealing with in ours. I've also spoken with my insurance company and found out that they cover both occupation and speech therapy if she's not getting her needs met through the district. Looks like she may be seeing Karin (her previous OT) in the very near future...