Silver Lining

Getting a good, knowledgeable general case manager is the absolute greatest thing I could have done through this move for the boys! She has so much more understanding and maneuverability through the systems and red tape and knows more resources than I could have ever dreamed of finding on my own. With her help, we are getting a wonderful team in place here that is *mostly* shaping up to be even better than the one I was dreading to leave behind! Our case manager feels like a best friend and has been my saving grace by helping me not only to find and obtain resources but to also accompany me to our various appointments and therapies and help me manage being out and about with two special needs kiddos (a feat which is difficult, to say the least, when I fly solo)!

Our new Early Childhood Special Educator (ECSE) through CDS is EXACTLY what the boys, especially J, need! I couldn’t be more happy with the aid she is providing us. She is so accepting and understanding and has some wonderful perspectives and suggestions for helping with some of the boys’ more difficult characteristics.

At our last session, the ECSE asked me who my greatest support(s) are and I answered her honestly by saying that, besides my husband, it is my children’s therapists! Is that really pathetic? I don’t have many close friends; the ones that I do have find it difficult to relate to all that comes with having children with special needs because they have never been there themselves.

All this wonderful support couldn’t be coming at a better time because we’ve lost some of the progress we had been making with J before the move. Moving has really thrown a wrench into an engine that has difficulty accepting change to begin with. We’re seeing many manifestations of the chaos he feels. He’s back to screeching all the time, he doesn’t want to eat and has become extremely picky, he’s becoming aggressive with his little brother and lashing out with adults too, he can’t self-direct any more, he’s more easily upset, he’s taking more risks, and the list just goes on.

C’s seizures are worsening in intensity and frequency, especially in the last week. We saw a neurologist on Monday who thinks that the seizures seem to be occurring due to lack of oxygen to his brain from the breath holding as opposed to originating in the brain as in the case of epilepsy. At first he was just tensing up but that last couple days he’s full on convulsed and it’s more pronounced on the right side of his body (so right arms and legs are convulsing much more than the left). I’m hoping the severity and frequency plateau soon. He’s having multiple spells a day when not even 2 weeks ago he would have about 1 every other day. I was able to get a few on video to show the doctors but there seems to be nothing more that we can do for him. The doctor mentioned medication to help with the seizure part but it wouldn’t do anything against the breath holding reflex and the side effects wouldn’t be worth it. We were advised to just make sure he’s safe and then ignore it as much as possible so we don’t subconsciously reinforce the reflexive behaviors. I disagree.