Sara, this was such a good idea and Mark, thanks for getting it off the ground! I can't wait to get to know other parents out there who have similar struggles. I've belonged to other online support groups that targeted my son's disabilities, but I've never belonged to a Christian one. In those groups, talking too openly about faith was a strict no-no. Consequently, I often left my computer more depressed that when I went in, due to the negativity and hopelessness that these parents lived with. I was often struck by how shallow the encouragement was that they could offer. "I'm sending white light out to you" really doesn't offer much hope, does it? What's that all about? How refreshing to be able to offer true hope, love, and encouragement!
I would love to hear your stories! They don't have to be long ... just a brief introduction about who you are and what brings you to this group. I'll start...
My husband, Steve, and I adopted our son Kyle, now 18, when he was two months old from Bethany Christian Services. He was a special needs adoption since he was born with Neurofibromatosis Type I. His birthmother has this disorder, as well. With NF1, there is a strong possibility of developing fibromas (benign tumors) under the skin. These tumors can be disfiguring and could cause multible problems, especially if they form on the optic or auditory nerves. NF1 can also cause learning disabilities and ADHD. So far, Kyle has not developed fibromas, but he does struggle with learning disabilities and ADHD.
Our greatest challenge with Kyle, though, is his struggle with mental illness. This is most likely not associated with his NF1. Kyle has a diagnosis of bipolar disorder, generalized anxiety disorder, ADHD, and Asperger's Traits. His primary mood, at least when's he's unstable, is anger and agitation. That's probably been one of the hardest things to deal with. He is usually anxious about something and it always expresses itself in anger. He has rages (though not at bad as before proper medication) and often has meltdowns. Not fun.
Our biggest issue right now is getting him to work. So far, we're not having much success. He's receiving funding to work at a sheltered workshop, but they primarily serve adults with mental retardation. He does not feel like he fits in, and we understand that. He would only need to work there a few months, though, and they would help him find a job in the community, as well as provide job coaching. It sounds great to us, but we just can't get him there. Today again, he had a meltdown and simply refused to go. We're totally frustrated and not sure what plan B is.
We do know, though, that we're not walking this path alone. That's where our hope and encouragement comes from. We couldn't get through a day without the strength Jesus provides us. He has been our constant Presence. White light? No, I rely on the Light of the world!
Anyway, that's a little of my story. What's yours?