For years I have struggled with agencies who provide Nickys behavior intervention. It has been hard for me to get them to provide the hours in the "Gold Standard" way they need to be provided to get the results ABA/DTT programs are capable of. Seven years into Nicky's diagnosis I am still fighting as hard now if not harder to get his hours and therapist to work on his case. THIS WEEK I'M LOSING THE BATTLE. Nicky's 25 hours per week have dropped officially to 8 and he has gotten 4. Doesn't take a brain surgeon to know that you can't do in 4 hours what you can do in 24. Nicky is a beautiful, smart, funny, and kind kiddo who likes to work. Nicky issues include; severe language processing deficits, limited motivation, poor social skills, lack of danger awareness, aggressive behavior and sensory integration problems galore.
Nicky is this great kid, who has great capacity for learning who can't keep a program that will help him be the best he can be. I keep fighting but it seems I am fighting with myself. Our state has an epidemic of children who have been diagnosed with Autism and there simply are not enough people to fill the work market. The pay is not so good, so the only folks (for the most part) who want the job are young adults who are going to school to get BA's/ or MA in psych or a related field. They see their positions as temporary, because the pay is poor, so they work for a while and move on. So, the work force problem is massive. Which means no people to provide the therapy.
Which means time passes and my son doesn't get the help he needs to be the person he can be. I'm trying to find someone on my own, but I can't afford it (because an independent would cost me $50 plus an hour) and If I had it I would not be able to properly monitor the program and it's progress.
I know "something" is better than nothing. I know my son has more support than lot's of other children, I know people are doing their best. But none of that seems to matter when it comes right down to it, because all I want is for them to take care of my son, and provide him with the consistency he needs to have a successful program. He doesn't have forever - behavior programs are not meant to be long term and as children age the pace of learning slows. So my darling boy loses valuable time, and there is little or nothing I can do.
Right now he is in the other room working with the therapist and he is happy, happy to be in his routine, happy to be learning, happy to be asked the questions and get the praise. It's a big contrast from 2 hours ago when I could not get him to sit down, relax, read or listen. All he wanted to do was scream, swing, tantrum.
I am looking for a new agency to provide this service, but they all have 6 month to 1 year waiting lists and I can't afford to have nothing. Not your win/win.
Notes to myself and others:
1. Rely on what I can do to offer consistency...and not others
2. Accept the systems flaws, without becoming resigned to them
3. Ask the agencys how they manage their waiting list and what kind of turn over they have before signing off with them.
4. Talk to other families to learn their experiences
5. Try to remain calm and know that this too shall pass.
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