She wants to sing and dance?
Now that Rachel was a part of the system, I was able to get help from an agency. One problem…what kind of program would be able to help my daughter get back on track? For the past three years she had so many disappointing and devastating experiences that she could barely function. She did not want to even try another school or prevocational program. That was out of the question. When a representative from the agency we met with asked her what she would like to do, she replied, “I don’t know; I just want to sing and dance.” All I could think was, “Oh great, this is never going to work out… I should just give up now.” But the representative replied, “I think I have a day program that you will love.” Within a couple of months, Rachel became a member of a theater day habilitation program at Family Residences and Essential Enterprises…she became a “FREE Player.”
This program was absolutely magnificent; but transitions for someone on the spectrum never go without its bumps and bruises. Also, getting individuals into any kind of program takes time. Paperwork, paperwork and more paperwork. That’s how it is…and endless stream of red tape. Patience is not a virtue for those with ASD. Once Rachel knew she was accepted into this program her anxiety level was through the roof and living with her for several weeks before she started was without exaggeration…UNBEARABLE. I was literally at the end of my rope.
Fortunately, Rachel started this program in June of 2007 and she slowly started to feel a sense of belonging. One hitch…most of the participants in this program lived in group homes. Remember, she experienced living away from home when she was in that “college-type program” just a few months before. That program did not have the appropriate staffing and supports necessary to keep individuals on the spectrum emotionally, psychologically, and physically safe and sound.
Even though she was, for the most part, suffering in an inappropriate environment…she loved the freedom. It was intoxicating. She was invigorated by living in a community of her peers and enjoyed being somewhat of a rebel, doing things that she would never be allowed to do while living at home. Yet she was in agony by not being able to handle all the emotional and social situations that she was experiencing.
Once she became OMRDD approved, as advised, I did place her on a list for FUTURE residential placement with a waiting time of approximately…..who knows when…but I would probably be very old and very gray when that day would actually come. Since Rachel was new to the system, she was placed on this list very late. Most of her new friends were already established in their residential placement or about to be because they appropriately came through the educational system straight into the adult services system for individuals with developmental disabilities.
Rachel had ups and downs at her new program, but was in a valuable therapeutic environment. She was slowly learning to manage her symptoms and behaviors in order to be a member of the community. Where her behaviors were not improving, but actually getting worse, was at home. While at home with me, my husband and my fourteen year old son, she felt like she was missing out on life. She had a little taste of independence and believed that living in a group home, like many of her friends, would be a wonderful solution for her. We did everything we could to keep her busy and stimulated, but she craved being with her peers and wanted a life that she felt she deserved.
Okay…maybe I could fundraise and help to ultimately get more houses to be developed quicker. This proved to be an outrageously TALL order. Nevertheless, I got very involved in trying to raise awareness for the cause and did what I could to make people aware of the epidemic that would, in some way, affect almost every family in America one day. I was so focused and determined to make a difference, not only for my daughter, but for every young adult with ASD who “fell through the cracks” and was suffering.
Rachel had successfully finished her first on stage production with the FREE Players and I had just finished up with a profitable fundraiser with the help of my very good friends. I was exhausted, but hopeful…then in a blink of an eye…my life as I knew it was completely changed. I was diagnosed with breast cancer.
To be continued…