When I was a child, I was not very popular and I usually only had one close friend at a time. There was one point in my life when I had exactly one friend and I relied very heavily on her for emotional support. We did everything together in school, had sleepovers on the weekends, and occasionally played over each other’s houses. One day we were in 8th grade, sitting at the lunch table, talking like always, and she looked a little nervous. She looked away and said, “M… I think I’m going to go sit with some other friends today.” I said, “Um… okay?” And she left me there with the drawings
we were working on. She didn’t invite me to come with her. That was the first time I felt truly rejected by a person I trusted.
Little Bear started Physical Therapy in February of this year. He was an itty bitty thing, delayed in walking, delayed in crawling, delayed in everything gross-motor related. His muscle tone was low and balance has always been a challenge for him. We went to Early Intervention and they gave him 30 minutes of PT and 60 minutes of feeding therapy. His first therapist came twice and basically said, “Oh, he’s doing great. We’re going to put him on a maintenance schedule.” Her maintenance schedule was coming once a month. He did not improve in that time, although her cheery demeanor made me think he was almost normal.
By April, she was already dodging my calls and cancelling sessions. I called up my coordinator and she was livid that she had changed his therapy hours, let alone decided he was “cured.” She was quickly replaced and the new therapist was wonderful. It was the first time we’d been left so suddenly, so the sting was forgotten once our excellent new therapist started with our little bear.
July rolled around and the events of this blog occurred. Little Bear received his diagnosis and we began the journey into therapist land. We received an agency recommendation from a friend whose toddler had severe delays related to being a micropreemie and spending two years with breathing help. We knew any recommendation from her would have to be the best of the best.The OT was excellent. From the very first day, Little Bear was interested in her and loved being in her company. His second PT was equally enjoyable and suddenly we had about ten hours of therapy a week, making Little Bear’s progress grow in leaps and bounds. As parents, we were so proud of his progress and were beginning to see a light at the end of this dark, endless tunnel.
October rolled around and the PT told us that she was going to begin sending her PTA to do Little Bear’s therapy and she’d come and do progress checks. We were fine with it, since all of our therapists up until that point had been excellent and we felt secure that the PTA would be the same. We planned a Saturday visit after a weather emergency in the area cancelled our first appointment.
The PTA came to our house wearing ill-fitting scrubs and shoes that were meant to be regular shoes, but she had stomped down into flip-flops. Her hair wasn’t completely combed and she gave me a feeling that made me uncomfortable with her around my child. Papi Bear was also there and he raised an eyebrow when she came in. Papi Bear goes on first impressions and I knew this woman wo
uld have to be a brilliant therapist in order for him to allow her to come back to our home.
She was not a brilliant therapist. She essentially just chased Little Bear around for 60 minutes, repeating over and over again how cute he was, and at one point put him in her lap and kissed him. That was the last straw for us. When we closed the door behind her, my husband literally said, “She is never coming near our son again.”
We told the agency we were not happy with her and we’d like a different PTA. The PT responded that she was off for the Jewish holidays, but she’d take Little Bear back on as soon as she was back and she’d find a suitable PTA as a replacement. Two weeks passed… And by two weeks, I mean two weeks after Rosh Hashanah had ended. We received no update and no new schedule. I called up the owner and asked when we would be starting again. She called the PT and she said she didn’t have time to take Teddy on and she was dropping him. We were devastated. Two hours a week of therapy gone. The company told us they would find someone else, but here we are two months later without a replacement. I’ve started looking on my own at this point.
We continued on their wait list for an SLP. We finally got the call in November. She came on a Saturday morning and seemed very friendly and professional. We went into Little Bear’s room and I sent Papi Bear and Brother Bear to get lunch so there would be no distractions. Little Bear is never in the mood to be evaluated, but he was even less so that morning. He wouldn’t do anything she said and he kept biting me. She said she understood – it was his first time meeting her and he was understandably distracted. He was not happy and not cooperative. He just wanted to play peekaboo on the bed and roll his trucks around. His interest in her test was nil.
After she finished the evaluation, she told me her availability and it worked perfectly with ours, so I was very happy to hear it. She shook my hand and said she looked forward to planning our sessions soon. She would not answer any questions about where she saw him developmentally. I closed the door expecting her to call me within a few days to get started.
She never called.
The agency called more than 2 weeks later and said she would not be taking Little Bear on because he was “aggressive.” She was not comfortable working with a child who scratches, bites, and cries when frustrated. My immediate response was, “Then why on earth would she even bother to waste my time and money evaluating my autistic toddler?” A neurotypical toddler bites, scratches, and cries when frustrated, so I would imagine a “professional” would expect a child with an ASD diagnosis to have these traits as well. On top her label, this chart shows where she ranked my little bear. 15 months old. My Little Bear has a vocabulary of around 100-150 words, even though he’s not a big talker. He used a three word sentence in front her repeatedly (I see you) and he knew all his colors, shapes, numbers, and letters with her.
The other rejections bothered me, but this one broke me. My son was labeled aggressive. My son was labeled as being half of his developmental age. Were his other therapists lying to me? The agency told me she had spoken with his OT before taking this decision, so I assumed they may be. I showed the evaluation to every therapist he has and they all disagreed completely with what it said. It made me feel a bit better, but now I just felt my child was the victim of discrimination rather than having been misdiagnosed. I made sure her agency knew I felt this was a very discriminatory practice. As his ABA therapist said, “Any therapist who takes on a child with ASD should expect to be bit, scratched, spit on, and screamed at. It comes with the territory.”
Little Bear has also been in a new daycare since late August. He loves it there and we love do, too. It’s more money than we’d like to spend, but we think his socialization and education are worth the investment. He’s in the 2-2.5 year old room with 20 other kids and 3 teachers. He seems happy there.
Over the past month, there have been a number of biting incidents. We’ve realized that Little Bear knows that biting gets attention and he’s been taking full advantage. We’ve attempted to address it with cheweys and other actions, but nothing has worked so far. Usually he comes home with a note saying he’s bit a child at least one of the three days a week he goes to school.
On Wednesday they informed us that they would be putting him on probation. He has one week to stop or he’s going to be kicked out of the school. They told this to Papi Bear – originally saying that would be his final week, but Papi Bear was able to negotiate one last try. The owner claims 4 families have already left because of him. I don’t know how much I believe that, though. It’s a 2 year old classroom and unless he’s biting one child over and over again – which they said he isn’t – then I don’t understand what parent in their right mind would pull their child from an excellent school based on one or two bites. Both of my children have been bitten in school and my thought is, “Well, they’re in a room full of 2 year olds and 2 year olds bite.”
Little Bear being threatened to be thrown out really broke me emotionally. I cried buckets when Papi Bear told me. I want Little Bear to stay there, but I don’t want to be in a perpetual state of fear that he’ll be expelled. I sat and thought on it a long time. His OT recommended special daycares for ASD children. One is 30 minutes away going in the same direction as traffic. The other is $900 a month for 3 days a week plus a $600 registration/supplies fee. Neither is within our means. Today his ABA therapist and I came up with a possible solution. Once he has been added to our private insurance, we’ll start him on 20-30 hours of ABA a week. We’re going to ask the school to put him back on the wait list to give him a few months to work on his problems. When he goes back the ABA therapist will be with him in the classroom and prevent him from biting. We’ll also start working with picture cards for him and see how he does with them.
I feel confident that he will improve. We just need to get the right team together that believes in him.