Good news is never simple here.
For instance today we found out some not just good, but great news - Asher was approved for the At Home Program (the assessment I wrote about last week). That means that going forward he will have most (if not all) of his supplies covered - seating system, orthotics, walker, wheelchair, diapers once he turns three - you name it! He's also been considered "dependent" enough to put us on the wait list for respite care. I have no idea how long the wait is, but the thought of ever having a respite worker to help out with the kids (obviously Asher in particular) is mind blowing to me. Exactly what Jordan and I could use to keep our energy reserves, health, and sanity in check.
This is fantastic news, right? Most of our financial stress around any gear Asher needs has been lifted!* So why did the news feel like a kick in the face? Why did I race out of our therapy session as quickly as I could to cry in the car? And why did Jordan feel the same?
Because this approval means that Asher has been deemed disabled enough to NEED this. A board of reviewers decided that Asher, and our family, need help. I can tell you, it does not feel good to need help because your child is disabled. It is heart breaking. The opening statement describing the program says it "assists parents with some of the extraordinary costs of caring for a child with severe disabilities at home through a range of health supports and services". Severe. That's a hard word to swallow.
I am however telling myself that similar to his CP diagnosis, this decision doesn't change Asher. He is no more or less disabled just because we are getting funding for him. He is who he is, every wonderful bit of him, and nothing about this changes that. I know that we will come to see this funding as the wonderfully advantageous thing that it really is, and I'm sure that when we make our first heinously expensive purchase (a seating system in the new year) we will be thrilled that we are not paying the bill!
All in all it is fantastic news and I am so glad we have it available to us. I just wish there was no sadness to go along with it for once.
*Unfortunately, this program doesn't cover an "alternative therapy" such as Feldenkrais. We're still on the hook for that one!
So happy to hear that you were approved!
ReplyDeleteGlad you were approved! It should really help a lot to not have to worry about purchasing the major supplies.
ReplyDeleteMany hugs.
At home does pay for diapers for under 3!!!!!! Just get the script from your GP for how many per day the diagnosis and the length needed for. They also cover wipes, basically anything from pedialyte to nutritional supplements.
ReplyDeleteWe get the pediasure, pedialyte, wipes, diapers, peg, thick it. We got approved at 2 for diapers!
Wow that's great Christina, except Asher has no reason to get diapers before two. CP doesn't affect him in that department :)
ReplyDeleteI totally FEEL your post. All of these things are tough realities.But we must "stop thinking in terms of limitations and start thinking in terms of possibilities" Thank you for visiting my blog and for your kind words :)
ReplyDelete