I'll begin at the beginning.
Truman receives behavioral therapy funded by the Regional Center. He has been receiving this therapy since shortly after his diagnosis and basically it is the one thing we've done that has made the most marked improvement in his life. That sounds pretty extreme, but if you knew anything about his behavior, demeanor, and communication skills before ABA, then you would realize what a game-changer it really is. These therapists have lovingly worked with him anywhere from 3-5 times per week over the past two years.
They worked very hard. We worked very hard. Truman worked the hardest of all.
These therapists have been welcomed into our home in the most intimate way. They really helped us learn how to more effectively parent a spectrum child. They helped us understand what he was trying to say to us with his maladaptive behaviors. They showed that there was hope for his future. They showed us there was hope for our present, too. Pretty much, they saved our family.
The work they have done means everything to us.
And now I am told it is all going away.
The meeting I went to yesterday included Truman's Case Supervisor, his Service Coordinator from Regional Center as well as their Autism Specialist...oh yah, and me. I requested the meeting because I was not happy with the proposed reduction in service hours for his ABA therapy. They wanted to reduce from 6 hours per week down to 4. They also wanted to have me take over running the sessions.
Basically, we're being cut off.
Just like that, BOOM! No warning, no consideration of where Truman is in his process and development, where he is in his behavior right now, where we are as a family unit. Just some arbitrary timeline created by the state saying "Tick-tock, Lady...your two years are up!"
Well, suffice it to say, I am not pleased with this prospect. I am not satisfied that this is a good solution for Truman's care and life management. And as a Regional Center client, he is entitled to certain protections and services under the Lanterman Act. (If you're not familiar with this, it's basically a California law that protects the rights of people with certain developmental disabilities so that they can choose to live as normal a life as possible. Like, in a house with their family instead of in some state-run institution - which was the common practice not so long ago. Incidentally, it is a great cost-saving measure by the state to have these people cared for in their own homes.) So, considering all those things and also coming to the realization that I need more help and support than I currently have, I am working on getting IHSS for Truman.
That opens a whole new bag of worms. Apparently this is a somewhat laborious process and it is confusing as well as a bit invasive. For us the process is complicated by the fact that I already receive SSI for my disability benefits. I keep saying that I wish we had someone that could come into our household and like, I don't know... trouble-shoot it. You know...look at all our possible options for support and intervention and basically coordinate the solutions. Like say, a social worker...duh.
So, now one is entering the picture. Unfortunately, I have heard nothing good about the social worker that has been assigned to us, and after the bumbling and incoherent 15 minute conversation I had with her yesterday, I can see why. I am fearful that we won't qualify, or that it will be a minimal benefit. I am also worried that the process will take so long I won't be able to hold out.
My surgery is going to happen whether this process succeeds or not, but the prospect of facing my recovery without this additional support is absolutely overwhelming. I feel scared, incompetent, out-of-control, and more than a little depressed.
But to quote Louis Wu from Ringworld by Larry Niven, "You're going to have to get over this sometime. Why not now?"
It seems like a simple platitude, but it actually is true. To put it in God's language it goes something like this:
"Therefore I tell you, do not be anxious about your own life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, not even Solomon in all his glory was arrayed as one of these. But if God so clothes the grass of the field, which is today is alive and tomorrow thrown into the oven, will he not much more clothe you, O you of little faith? Therefore, do not be anxious saying 'What shall we eat? or 'What shall we drink?' or 'What shall we wear?' For the Gentiles seek after all these things, and your heavenly Father knows you need them all. But seek first the kingdom of God and his righteousness and all these things will be added to you.Therefore, do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is it's own trouble." (Matthew 6: 25-34)
Okay, let's all take a deep breath together...come on...tummies big! And shhhhhhhhh.
And one more....shhhhhhhhhhh.
And...last one...shhhhhhhhhhhh.
Feeling better yet? Yah, me too.
Now...do you guys want some good news? I know I sure could use it.
Our request for Truman's intra-district transfer was successful so he will be able to go back to Frazier for Kindergarten. This means a lot to us because he is already so familiar with the campus and staff and also because several of his neurotypical peers with whom he was so bonded will likely be in his class again. Plus it means I will be working with an AWESOME site administrator to create Truman's program instead of a terrible, horrible, no-good, very bad administrator. So that is one giant check mark off my to-do list...aaaaaahhhhhhh.
It's a big list, but tell me... don't you think he is worth it?
Grace & Peace,
-Hannah
Yep, I sure do!!!
ReplyDeleteBooo on the struggle. But he & his happiness are so worth it!
ReplyDelete