If you reside in Rhode Island and have a child with autism, good luck. Most likely your child will be placed in an adaptive classroom and an individualized education plan will be developed for them but, unless you are very fortunate, you are going to need additional services.
The saying “If you’ve met one child with autism, you’ve met one child with autism” is true. A dozen children with an autism diagnosis will be a dozen individuals with extremely different needs. Our schools do not have the funds, resources, staff or time to attend to each child’s needs at the depth they most likely require. School is about education so its likely you will need to reach out for additional resources when it comes to therapies. This is where that “good luck” is aimed at.
Most autistic children are in need of a variety of therapies. Physical therapy, speech therapy, behavioral therapy, cognitive therapy and the list goes on. A Rhode Island directory will show you numerous organizations which offer numerous services, including ABA (Applied Behavioral Analysis) and HBTS (Home Based Therapeutic Services).
You may call these organizations and sit through hours of meetings and then fill out mounds of paperwork during the intake process. You will spend days or even weeks gathering the necessary information the organization needs. And then, more likely than not, you will be put on a waiting list. More likely than not, you will not hear from that organization again for months or years.
I am the mother of an autistic child. My first experience with obtaining therapy for my son was eleven years ago. I was new at this so, even though I thought it odd, I questioned nothing when the therapist came to my house twice a week and sat there for an hour blowing sticky bubbles from a plastic wand and literally doing nothing else.
When the opportunity to obtain services from a different organization came up, I jumped at the chance to maybe find some real help. As my child was non-verbal, I was completely pulled in by the video tape the organization played for me at our initial meeting. The tape was allegedly proof of all that their services accomplished.
In the first part of the tape, a non-verbal child is unable to communicate. Flash forward to a “few months later” and the child comes running into a room exclaiming, “Mom! I got a new lunch box! It has Barbie on it and I’m going to bring my peanut butter and jelly sandwich in it to school tomorrow!”
Wow. It was like a miracle. I signed on the dotted line. I actually signed on about 75 dotted lines as we went through the high stack of paperwork. My son didn’t start speaking in a few months. He didn’t start speaking through the entire span of years I was with the organization.
Several other things occurred however. On two occasions, two different therapists from that organization accidentally left their own prescription medications in my toddler son’s bedroom. Another asked me if I minded if she went out on my porch and smoked pot. Yes, I did.
I spent several afternoons listening to one loudly yell and cry while arguing on the phone with her boyfriend while she was supposed to be engaged in therapy with my child. Another broke something very valuable while she was alone in the living room and tried to blame it on my 7-year-old daughter who was in her own bedroom.
One of their therapists spent almost the entirety of his time at my home locked in the bathroom. Yet another, who was scheduled to work on Saturdays, only showed up one time within a two-month span.
The staff was always changing. My son would no sooner get used to a therapist and they would be gone. Then it appeared they just started hiring anyone. One man, who only worked one day, explained to me that he had never worked with kids before in any capacity and was in college studying accounting.
Eventually the organization was no longer able to accommodate the hours in which a therapist was needed in my home. I got him on waiting lists for other organizations and we waited. In the meantime, my son began speaking. That miracle cost about $20 as opposed to the tens of thousands which had gone toward therapy.
My daughter had gotten a Taylor Swift CD for Christmas and played it over and over and over and over. I couldn’t take anymore. Then, one day, I heard two voices singing along to it. The monotony had caused my son to memorize every word on that CD and he could sing them all. Suddenly my son could talk. Thanks, Taylor Swift.
We were later able to obtain new therapy services. The problem was that the services never actually began. Once a month, a staff member would come to my home while my son was at school and go over all the paperwork while telling me that services would begin “any day now”. Months passed before they admitted they had no therapists on staff.
One day they had an idea. They would send their “office person” to conduct the sessions until they hired an actual therapist. I was not comfortable with this arrangement. As with most autistic children, my child’s needs had changed greatly over the years. My son was going through puberty and had become very violent. The seriousness of my need for behavioral therapy to address this dangerous situation was explained in great detail and I was assured that adequate help would be provided.
The “office person” arrived as if dressed for a wedding; pearls, lacy shirt, coiffed hair and in no way looking as if she was intending to work with a child all day. She arrived, said hello and went into my son’s bedroom. My son immediately came out of the bedroom and proceeded to follow me around, loudly issuing his regular demands; I wasn’t allowed to stand in that area of the dining room, wasn’t allowed to look out any windows, wasn’t allowed to have any lights on, wasn’t allowed to enter the kitchen.
These demands, which began along with puberty, were one of the things I needed help to combat. But no matter how loud my son screamed them, the office person never came out of the bedroom. I finally went in the room to find her settled comfortably on the bed reading a book and asked her for some assistance. She stated that she didn’t know what to do.
I attempted to calm my son down but, even when I followed his demands, he got louder and angrier. Then, the office person stood there in the dining room with her arms crossed and simply watched as my son brutally attacked me.
I called emergency services. The police came, along with an ambulance. My son was transported to the children’s hospital for an evaluation. The lead person of the organization came to my house to make a report and the office person kept saying, “I’ll be seeing this in my nightmares for a long time.”
I was furious that this organization had wasted months of my time and then put me in such a dangerous situation with a person totally unqualified. I dropped services and got my son on another waiting list.
I then began another round of dozens of meetings and mounds of paperwork. Again I was told that services would start “any day now” and I waited. I waited for weeks. I waited for months. I waited for a year. Every couple weeks a staff member would come to my house to go over the paperwork again. I was first told they had no therapists currently employed. Then I was told, several times, that someone had been employed and was undergoing training.
Strangely, each time a different person was allegedly “undergoing training”, the person would quit right before they were supposed to start services with my son. Finally, a year in, they hired someone and the person actually came to my house for the purpose of working with my son.
The very young therapist seemed nervous and not only untrained but absolutely clueless about her reason for being in my home. I asked her about her qualifications and she explained that she had babysat before. I wasn’t seeking a babysitter. I was seeking a trained therapist.
Each week she came to my home and did one of two things; sit in my living room and watch television while my son was in a completely different room, or sit on the floor of my son’s bedroom and play on her cell phone. Over and over, I requested that she work with my son or at least establish communication with him. Her answer was that she had no idea what to do.
I addressed this issue with the lead person for that organization and he stated that, until she got to know my son better, due to his violent tendencies, they were not comfortable having her work with him. I questioned how she was getting to know my son when they were rarely in the same room.
I began to greatly resent this entire situation. I would be attempting to make dinner while my son was screaming at me about how I was not allowed to go in the kitchen, how I had looked out the window and that wasn’t allowed, how I had turned the light on and that wasn’t allowed, while a strange and silent girl sat unmoving on the floor of another room.
Finally, the day arrived when another physical attack occurred. As I scrambled to get up off the floor, my son ran for the door. His getting outside could have proved a nightmare. He got the door open and I lunged in front of him and attempted to hold it closed with all my might. Despite the utter chaos, the therapist never came out of my son’s room. I begged for her to come out and help me.
She came out into the hall meekly with her arms folded over her chest. “Help me hold this door shut!” I explained. “If he gets outside, he’ll run away!”
She just stood there and uttered no response.
“Help me!” I yelled.
“I can’t,” she replied. “I have no idea what to do.”
I had to call emergency services again. They took my son to the hospital again. I informed the organization they were done. I then once more began the process of getting my child on waiting lists for services. We’ve been waiting about a year now.
Once you get the official diagnosis that your child has autism, you have a long road ahead of you. If you live in Rhode Island, that road is filled with potholes, roadblocks, detours and washouts. I’ve heard that families have actually moved out of state to obtain adequate services for autistic children. It is a sad mark on our state when this is the best we can do.