Tuesday, October 9, 2018

Dear DS Clinic-Here's Why I Won't Be Back

Dear Down syndrome clinic,

Thank you for the reminder to schedule Jaycee's appointment this year, but I regret to inform you that I won't be coming back. I have been bringing my daughter to your clinic for the last 3 or 4 years. We initially switched to your clinic because we were at a loss with our daughter's health. The referrals you made to specialists in your hospital have been enormously helpful, and for that, I'm grateful.

But last year our visit to the clinic was not helpful. The only person who had anything positive to say was the speech-language pathologist (SLP) who was impressed with Jaycee's ability to communicate with her speech generating device. Maybe the fact that I'm an SLP caused this person to be a little more intrigued by Jaycee's communication and attempts at verbal speech. Whatever the case, the SLP interaction went well, but not much else did.

Our individual meetings with the occupational therapist (OT) and physical therapist (PT) consisted of them watching Jaycee make certain movements or do certain tasks. I was asked several questions. The bottom line from both therapists was that Jaycee's muscle tone was very low, and both appeared concerned by the things Jaycee couldn't do. From my perspective, she's been "really behind" her entire life, so I don't anticipate that magically changing as a preteen. I didn't hear anything real positive from either person.

Both suggested that we needed to seek private therapy to help her- aside from her school therapy she already received. I explained how her muscles have been affected by her hospital stays and illnesses. She use to bounce back from being in a hospital bed for a week, but now she needs quite a bit of recovery time. In addition, we have done private therapy off and on in the past that resulted with minor improvements and varying amounts of co-pays with our health insurance. Private therapy is not cheap. When someone suggests it needs to be done for Jaycee, I understand where they are coming from but last year we were paying off a large medical bill. We weren't looking to add to it.

My biggest problem during the 3 hour appointment was the nutritionist. I know I'm overweight, and I know my child is overweight. I blame much of my own weight gain on the stressful events that have occurred with Jaycee. I have had to cope with her diagnoses and her intense medical care and scares on my own, and I often turned to caffeine and food for comfort. In the past, I haven't always fed Jaycee the best. I know I can improve. However, I didn't need the hour long lecture on weight gain, nutrition information, and food facts. The plate demonstration, I felt, was a bit over the top. I have a Master's Degree, and I felt like at some point the whole thing became a little insulting.

When I tried to explain that part of the problem was the regular use of oral steroids (5 times last year prior to the appointment), frequent illnesses that often include multiple treatments a day for weeks, and a few hospital stays, they were immediately dismissed. I get that the bigger issue is me and what I'm feeding her but to downplay all of Jaycee's health issues that affect her everyday life (and mine) was off putting. It is something to consider. Her biggest health issue isn't her Down syndrome, constipation, and slow metabolism. She doesn't fit in the normal Down syndrome box. Her respiratory status is a major factor in everything we do or don't do. Sometimes, she (and I) are home bound for days and weeks at a time juggling treatments and medicines. Getting her to exercise in the middle of that is not a priority nor even a possibility with her labored breathing. In those times, I often feel like I'm in survival mode as the strain of monitoring her breathing weighs heavily on me.

After an hour, the nutritionist finally exited the room, and it was the doctor's turn to reiterate what the others had said. She, too, continued the lecture on my daughter's weight and how it was detrimental. She, too, was not concerned with how her frequent illnesses contribute to it. At that point, I gave up. I knew my role was to be quiet, accept the handouts, and agree to work on her weight.

Before the day ended, we met with a behavioral specialist. This was the person I was excited to speak with because his advice has always been helpful. At first, the conversation was driven by the topic of the day (her weight) and her lack of interest in exercise. He did provide some helpful ways to try to change that aspect. Then, I finally got to discuss the main concerns I wanted to bring up for this appointment- my daughter's increasing refusals, fears, and displays of anxiety related to all things medical. This concern of mine was something that I did need assistance with because it impacts every trip to the specialty appointments. This was my one priority I wanted to discuss that day with the team, yet it was given very little time. Jaycee's anxiety and behaviors have led me to avoid taking her to routine appointments by myself. I can't do them alone. If this would have been listened to, perhaps, you might also understand why private therapy in a hospital setting (which would be my only option given where I live) would be emotionally draining for Jaycee and I due to the fear she has associated to such places.

When the clinic appointment finished, I felt drained as I made the 3 hour drive home. I started to replay some things in my mind, and self-doubt started to creep in. I shed some tears later that night and again the next few days. I felt frustrated by the appointment, the focus on my child's weight, and my parenting that seemed to come into play. I felt like a crummy mother, and I felt that one problem with Jaycee had been singled out with little praise for anything else I do as her mom. I didn't like how I felt after the appointment. I have enough to deal with in her life as her caregiver who helps her daily with her bi-pap, nebulizer treatments, airway clearance, medicines, and homework.

When I read the letter to ask me to schedule a visit, I decided I wasn't going to add to my stress this year. I have made some recent changes with our diet, but I feel like it probably wouldn't be enough to make the nutritionist or the doctor happy. I feel like we are in a good place, but I don't know if it will be good enough. Thanks to a suggestion from my Aunt Sandra, I found a way to get Jaycee to exercise in the past year without much resistance. Headphones and an iPod with her favorite songs did the trick! Still, I doubt I'll hear any accolades. I'm sure no one would want to hear about Jaycee's 4 hospital admissions since our last visit, 4 oral steroid courses this year, and the long battle to get proper foot braces that allowed her to walk without pain. I feel that the focus will be the faults. For those reasons, I will not be back to your clinic. Maybe next year, I will feel differently. But for now, I'll let the six other specialists Jaycee sees be enough. They monitor her weight as well, and I'm aware of the goals we need to achieve.

I hope if I do come back that I will feel acknowledged. I hope that my daughter can be viewed as an INDIVIDUAL with Down syndrome who certainly doesn't fit every characteristic. I also hope my own concerns can be discussed more at length.

Jaycee's Mom


  1. I feel for you. I also have a daughter and a son with down syndrome. We have been fighting the weight for some time. Theirs and mine. Stress does not help. I did not go back to the Clinic this year but did put my kids and husband and myself on a low carb diet which has helped with weight loss in all of us. My daughter who is 16 has lost 21 pounds so far and my son who is 21 has lost 15 pounds, My husband has lost 25 and I have lost 54 pounds. With the weight loss came more activity which has helped their other problems with breathing. The steroids seem to put weight on them when they needed them, but with the weight loss they have not needed them. You need some respite care if possible, because you need time for yourself to get yourself in the right frame of mine to fight this battle. Good Luck.

    1. Thanks for sharing your story. I know many of us are in this situation. We are on a low carb diet at home and rarely eating processed foods now. So I am feeling better about it. We are seeing some progress. I just don’t think it will be “enough” for the clinic.

  2. How extremely frustrating! I wouldn't go back either! It sounds like your daughter's health is well monitored without it anyway, so why add one more stressor to your lives? It's very difficult to get my daughter to appointments too, so I know what that's like. My husband has to take the day off when she has them and even so sometimes she refuses to get out of the car when we get there! We gave up on private physical therapy when she could run away and climb up the cabinets to get what she wanted! I also realized that she I could do the same private OT activities with her at home.

    1. Sounds like you have similar issues! You are right about not adding any more stressors.


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