Last week I was at my breaking point. This week I feel like giving up. I want to fire everyone.
Early Intervention, although we are fortunate to have such a program in NJ, is a difficult system to navigate. It does wonders, but it is flawed. Very flawed.
When you have a child on the spectrum, your options for treatment are slim to none. If you have millions of dollars, you can hire a private team of therapists and a coordinator to oversee your child’s care. When you are poor, you can get Medicaid and pursue your child’s treatment with providers who honor Medicaid (if you can find one!). If you are middle class, your only option is to second mortgage your house, get money from rich relations or go through the state’s Early Intervention program. However the Early Intervention program is based on an educational model rather than a family model. It is designed to help a family learn and cope with autism (or any disability) rather than cure or treat an individual. Now why would I want to maintain her autism? If she is so young and quite possibly can be recover with intense treatment, why would I not pursue that avenue?
Ava’s therapists are all wonderful, well-educated and compassionate professionals. I like them as people as well as therapists. She receives 18 hours of ABA therapy a week from four different therapists. Ava’s team leader had to leave because of complications with her pregnancy. We got a new team leader who has a different ideology, but is still true to Ava’s program. Ava’s new team leader is enthusiastic and compassionate — she already has had a great effect on Ava.
I used to manage a team of young adults when I worked at a gym in Brooklyn. It was a horrible job and I hated dealing and supervising people. I became an actor because I take direction well — not because I wanted to be a control freak and boss people around. I vowed I would NEVER manage people again. But lo and behold, now, I am managing a team of five people – her four ABA therapists and an occupational therapist. All of them cancel sessions for various reasons and make-up sessions do not seem to be a priority. I have to manage Ava’s schedule like a secretary for a high-powered boss. She has very little open windows of time. She naps. She eats. She is two years old. I am overwhelmed and discouraged. One mom told me, “you are going to have to be a hard-ass, Kim.” That turns my stomach. I have to keep people in check? Constantly? Why can’t people just be accountable and trustworthy — and do their jobs.
Lately the cancellations have been getting out of control. In any given week, 2 or 3 therapists may cancel. To date, she has never gotten a full week of the allotted therapy hours she is to be provided. I wonder how this affects her recovery or possible recovery. I wonder if this is doing her any good — or is all this time wasted. Consistency is key for an autistic child — and she is not getting consistency.
So I complained to their supervisor, something I hate to do. And I was promised of more of an effort to curb cancellations and perform make-up sessions immediately. Well, so far, one therapist canceled the entire week due to vacation and one other canceled due to illness. Here we go again!
Why can’t I get people who want to treat my daughter? Why can’t I get a full commitment out of anyone? Why can’t people be accountable and reliable? I pray for the day when autism is treated like any other disorder and proper treatment is available to all autistic children – not just the very rich and very poor. I shouldn’t have to beg for treatment hours or settle for sub-standard, inconsistent treatment for my daughter.
Do you have similar challenges?