1. BY AN AGENCY

In the spring of 2006,  I received a flier about a 4 day long, spring vacation  program for children with autism. It came from  the autism support organizations we were part almost from the inception. I was not sure if Robert would have had enough support to attend all the four days, but I believed that he could go with a small group of his peers to the Big Apple Circus. After all, he went there with me and his sister a few  times.  He loved it and he behaved appropriately.  Going with a small group seemed like a natural next step.  So I called the number on the flier  to register Robert for that outing. As soon as I said Robert’s name, I heard a silence.  It lasted so long, that I thought I was disconnected. I hung up and redialed.

“How did you learn about this program?” I was asked.

“From the flier.”

“You shouldn’t get the flier.”

“How come?  We have been members for years.”

“You shouldn’t get the flier. ”

“This is a program paid by grant for children with autism.  Robert has autism.”

“This is not for Robert.  You shouldn’t get the flier.”

2.BY A PHYSICIAN

The same spring  I tried to transfer Robert’s allergy shots from the Children’s Hospital to a local allergy office. Weekly trips to medical area in Boston were tiring and time-consuming. I found a local allergy doctor who agreed to cooperate with the specialist from Children’s Hospital in regards to Robert’s treatment and I made an initial appointment.  That day, like many other days, Robert was miserable with his running nose , result of the hay fever. He was constantly reaching for tissues and looking  for places to dispose them.  Since there was no waste basket in any of the two waiting rooms, I kept taking the dirty tissues from Robert while simultaneously filling the office registration form. As I approached the counter to pass the form back to the secretary, Robert noticed a  waste basket! In a fraction of a second, he removed all the dirty tissues from my open purse, ran BEHIND A COUNTER , and threw all the tissues in the only waste basket he could find. I couldn’t help noticing the shock on the faces of the three secretaries.  Someone has invaded their space! Since,the rest of the appointment went uneventfully (at least in my eyes) I didn’t make much of that silent scorn.

A few days later, when the vaccine was already transferred, I received a call from the allergists’ office. I was given explanations, too convoluted to understand and too tortuous to  reconstruct them on this blog,  why Robert couldn’t be served in that practice.  I was clearly assured that a refusal to provide medical services to Robert didn’t have anything to do with his trespassing in a quest to find a wastebasket.

“It is not because he has autism.” I was assured. “There are other reasons.”

Maybe there were other reasons, but none of them made any sense.

3. BY THE SCHOOL((s)

“No, Robert cannot attend Collaborative ‘s summer program”. Said the program’s lead teacher  in the middle of June, 2006.
Although I knew that Robert was hardly tolerated by this teacher, I was surprised nonetheless.  Just two and a half month earlier I participated in  a meeting, attended by more than 10 people from the Collaborative, from local agencies, and from public school district.  Robert’s behavior was discussed. He broke a window in the room he was left alone because of his behavior.  I am not sure what this prior behavior was.  Somehow, that detail escaped my attention.I know it was not an aggression.  It could be a self-injurious behavior.  It could be screaming. I don’t know.  He was separated from other children, left in the huge room, a part of a rundown, modular unit. He bang on the window.He broke the glass.  He didn’t hurt himself.   He was suspended for a week and now a meeting was held to discuss the next step. Since from the teacher’s prior attitudes expressed in her multiple phone calls home, I had deduced that she had had a hard time dealing with Robert, I suggested, I asked, I  begged many times to let me explore  different schools.  It was clear to me then, in end of March of 2006, that the program didn’t work for Robert and that he would not be tolerated much longer.  So I asked, “Please, consider other programs. Please, send his folders to other programs.  Let me check them, before the school ends, so he is not left without a school.”

Under Massachusetts’ commonly approved practices -if not laws- I could not visit any program without the public school consent .

I repeated myself ad nauseam, as humbly as I could, “Please, let me see other programs.”

“There is no need for that.” Stated the lead teacher.

“It is too early for that.” Said a person from the  Commonwealth’s (State) Department.

“Oh, the Collaborative is doing a good job. They know Robert, they like Robert.” Affirmed the administrator from the public school district.

“I like Robert very much.” professed the teacher.

Two and a half months later the same teacher said, “No, Robert cannot attend the Collaborative’s summer program.

“But the summer program is written in his IEP.”  I replied.

“If it is, it has to be ANOTHER summer program. Our summer program is not for him.”

For the next four and a half months, Robert, fourteen years old at that time, stayed at home.

BUT:

1. I found another agency, wide open to Robert.

2.I found another allergists in the town of Natick, and for almost two years Robert was receiving allergy shots over there in a wonderful, calm atmosphere.

3.For four months, I taught Robert at home to discover how much more he could learn with appropriate instruction, and how easy it was to improve his behaviors in and out of the house.

In the end all those rejections were beneficial for Robert, but I cannot say that I still don’t feel the pain, they caused.