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One mother's attempt to advocate for her special needs child

 
 
 

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  • Amber Drea

When A Therapist Fires You


How could anyone quit this face?

This week, Stanley’s feeding therapist informed me that she would no longer be working with him, and apparently I am to blame. That’s right, a trained professional who specializes in helping children with developmental delays and is paid by the state to do so has decided to stop providing feeding therapy for a 3½-year-old nonverbal autistic boy because his mother disagreed with her approach.


We showed up at the feeding therapist’s office on Tuesday around 12:00 p.m. for our regularly scheduled session, and the receptionist looked surprised to see us. She went into the back room to let the therapist know we were there, or so I assumed. As I started taking Stanley’s shoes off, the receptionist returned to say that the therapist wasn’t expecting us because she hadn’t heard from me. I was confused since I hadn’t been contacted by anyone regarding changes in Stanley’s feeding therapy. The last time the therapist and I spoke was at last week’s Tuesday appointment when she told me Thursday was canceled and offered to do a make-up session.


I asked the receptionist if I could speak with her. The therapist came out and I asked her what was going on. She invited me into the back room so we could talk in private, which annoyed me because that meant I had to unbuckle Stanley from his stroller and bring him with me. I just wanted answers and didn’t really care who else heard the conversation. Once we were behind closed doors, she told me that she’s terminating services with us due to “resistance” from me regarding her techniques. I asked why she didn’t text or call me before I packed my son up into his stroller and walked 20 minutes down to her office. She said there was a policy that she’s not allowed to directly contact me about ending services and that she submitted paperwork to Stanley’s service coordinator. I explained that I had not heard from the SC nor had I received any paperwork. She continued to list the reasons why she was unable to make me aware of the situation in advance so I wouldn’t waste the limited amount of free time we have between Stanley’s other therapies rushing to her office for no reason. I wasn’t interested in her excuses, so I said, “OK bye,” picked Stanley up and walked out to the waiting area where I sat him back in his stroller and proceeded to put on his shoes, which takes several minutes due to the orthotic inserts he has to wear.


The therapist followed me out, so I took the opportunity to give her a piece of my mind in front of the receptionist and another mother who was waiting with her children. “You have no idea what we’ve been through,” I said while struggling with Stanley’s sneakers. “I can’t believe you’re firing us as clients because Stanley’s case is too difficult for you, and I don’t understand why you couldn’t just talk to me like a normal person rather than hiding behind some policy. All you had to do was text or call me to let me know I shouldn’t come today. Instead you let me walk all the way down here and made me waste my time and energy. At least I don’t have to come here anymore.” She just stood there with a shocked look on her face as though she couldn’t comprehend why I was so angry. As I backed the stroller out through the door, I hurtled one final insult: “Fuck you.”


Sure, I probably didn’t have to use profanity, but there’s something so satisfying about telling someone off right to their face. As I pushed Stanley’s stroller down the street, I called the service coordinator to let her know what happened. She said she hadn’t heard from the agency regarding termination of services, and when she checked our file in the system, she only found a document uploaded on May 15th (the day after our last session) that stated the feeding therapy would end on June 14th. So even if someone had told me about the termination, we should have continued to receive services for three more weeks in order to allow us time to find another provider.


The most baffling thing is I had no idea there was a problem. In the five months that this therapist had worked with Stanley, his progress had been extremely slow, as is the case with all of his therapies. He has severe development delays after being hospitalized four times in his first year of life, including a six-week stint after undergoing a liver transplant, and he received most of his nutrients through a nasogastric feeding tube from the ages of 4 to 15 months. He basically forgot how to drink from a bottle and had such low tone in his facial muscles from lack of use that he literally had to be taught how to bite, chew and swallow. He’s had five different feeding therapists who’ve tried many different approaches with very little luck. At one point I was paying $125 per session out of pocket and traveling from Bay Ridge, Brooklyn, to the Upper East Side, Manhattan, because I was desperate for Stanley to get the best therapy. A couple months before his 3rd birthday, he was approved to receive speech/feeding therapy five times a week after the EIOD (Early Intervention Official Designee) finally understood the extent of his delays. Still it took another three weeks to find a feeding therapist whose schedule worked with ours. Unlike all of Stanley’s other therapies, we had to go to her office but at least it was only twice a week. She was young and it took her a while to find a groove with Stanley, which I attributed to her inexperience. In fact, she always seemed a little awkward around him, especially when he refused her attempts to use various techniques or started to cry. I tried to intervene sometimes, but it seemed like she wanted to figure it out herself, so I just sat back and observed.


After about three months, she suggested a new approach that involved feeding Stanley only textured foods at all meals, which meant he wouldn’t get as many calories as he had been. These types of changes always give me anxiety because we’ve had such a hard time getting him to gain weight and I don’t want him to have another feeding tube placed or be hospitalized again. I’ve actually been diagnosed with PTSD over it. In the first year of Stanley’s life, I didn’t question the doctors or nurses enough and some very traumatizing incidents occurred. Now, after three and a half years of caring for a child with numerous medical issues and special needs, I know that I must advocate for my son and make sure we do only what’s best for him. I told the feeding therapist about my concerns and she seemed annoyed that I wouldn’t just blindly do what she said. I understand that she’s the “expert,” but techniques that work for other kids don’t work for Stanley, and it’s not as simple as doing A, B and C to get a specific result. I eventually agreed that we could try the new approach after his next check-up with the liver team, which was the following week. I also met with a nutritionist to discuss ways to boost his caloric intake while introducing different textures.

Then Stanley got really sick with gastroenteritis, which landed him in the emergency room, and he was unable to receive any services for a week. During this time, he lost 2 pounds, which was about 7 percent of his total weight, and I didn’t feel comfortable starting the new diet until he gained the weight back. Shortly after he recovered from the stomach virus, Stanley contracted a bad head cold with sinus and chest congestion, which made it difficult for him to eat. He would often cough so much that he’d throw up. So I put off starting the new regimen for a couple more weeks. Finally his congestion cleared up and he’d returned to his pre-gastroenteritis weight, so I got the go-ahead from his pediatrician and the nutritionist to try the new diet. Things were going well for about a week, or at least I thought they were until Tuesday when the feeding therapist dropped this bomb on my head. Fortunately the service coordinator was able to find another speech therapist to fill in temporarily, but she doesn’t do feeding therapy so he will be losing valuable hours of an important service to which he is entitled.


I’m heartbroken that someone who’s supposed to help kids with significant developmental delays could give up on a child like Stanley. Even if she hated me, how could she turn her back on a little boy who’s been through so many physical and medical challenges? How could you spend five months with Stanley and then just quit because it was too hard? Sorry to break it to you, but special needs children aren’t simply problems you can solve by doing the things you learned in school. It takes understanding that each child is a unique human being with a different set of issues. It also requires compassion for the parents who are fighting every day to ensure their children are as happy and healthy as they possibly can be. If you can’t do that, then maybe you’re in the wrong profession.

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