I have been thinking lately of how we as a family of two autistic teens have been treated by those professionals serving the disabled community. For nine years my son Nick attended the autism summer camp with Matthew being eight years. I start planning for camp early each year and due to this we do not sign up for Extended School Year , but that backfired this past summer.
A few years ago I read about a New Jersey Mom where the school her special needs child attended read and utilized her blog against her at the IEP. Because of this I have been lax in posting my true feelings about the camp issue this past year along with what happened with the behavior parent training a few years back through one agency and the clinic where Matt received Feeding and Floortime therapy.
But parents need to stick together and share both positive and negative experiences for others to glean from and determine what is the best resource for their kids. Quality control exists for a reason.
Camp abruptly was cancelled before the start of summer, but way after the deadline to sign up for ESY so Matthew had nothing for two months to keep his progress going and his decline was evident to his teacher at the start of this school year. Things he once was able to do had to be taught over. There were obvious deficits due to not having any services over the summer.
The camp ended their association with the State of California Regional Centers and proceeded to send the written exchanges they had to the families. I felt this was poor judgement to air their dirty laundry to the very people they serve. They basically left us hanging with nothing - there was not even a planned day for families to get together so the kids can see one another. After nine years this is how my son was treated and I felt it was unacceptable.
Over the course of the summer the Regional Center cut camps as a vendored option, leaving families scouring to find funding opportunities. Several weeks ago we started going to Kids Enjoy Exercise Now (KEEN LA) where we ran into a fellow camper that was in Nick's class for the previous two years.
For years I had been telling other parents and promoting online about the summer camp and now we are in the dark about what will happen next year. In talking to the other parent at the KEEN sessions she also did not get her daughter into ESY because of camp, but in spite of that her child still wants to go to camp next summer as does mine. It is a conflicting feeling and I wonder how they will contact parents in the coming year.
The Behavior parent training few years back was for a few months but the services were hardly professional. Since that experience the Regional Center has ceased doing business with that company, but after my calls to complain the so called therapist trashed me in the final report. This is why I hate assessments and reports.
The girl got the job from an ad on craigslist and tried to use her version of PECS with my nonverbal son Matthew. I explained to her that she was no speech therapist and to stick to the assessment plan. One session she brought a new therapist who had a low cut tank top on. I called the office to complain about their attire and the way the therapist conducted herself in my home.
The feeding therapy started years ago and went well for a long time until I requested the sessions to be at my kitchen where we needed the help. Matthew had no problems eating in their kitchens but the issues were here. There was never any organization to the sessions as the therapist would bring a piece of paper and never follow a plan or give me written directions. I asked many times to use foods that required a fork and spoon, but it was always foods that could be eaten by hand.
The visits to school were inconsistent and the same questions were asked each week. For months no one ever showed up and there was a huge gap in services offered. We were basically just left hanging and Matthew is back to eating limited foods.
I have run into the Occupational Therapist and Dietitian twice in the last year - once at a funeral and just last month they were presenters at a feeding seminar I attended. It is my belief that some professionals speak well on their topics and are good on paper, but fail in achieving success with the client.
I requested many times to get the copies of the videos they took of me and Matt, yet to this day nothing ever arrived in the mail. I wanted to see the progress and learn from these tapes, but they were too busy using them at their seminars to help other professionals instead of following through with their own clients. My son has suffered because of this.
The Floortime therapy was through the same clinic since we had a relationship with them, or so I thought. After a year at my home they stopped suddenly due to the therapist being allergic to cats and we had one from outside come inside. No one ever came again after that and just left my son in the midst of the progress with no help whatsoever.
It sure would be nice if the therapy remained consistent and the families received some guidance before it all ended. Thanks for nothing..