Acadia
Long ago you first observed our son during your internship, but when you became the lead NMT therapist on his case it was under pandemic conditions using telehealth that I honestly never expected to be successful. You’ve been in those sessions. You remember what the first few weeks were like (thank you for not giving up after that, BTW), and I think we both can agree it ultimately ended up being much more productive than it could have been. Thank you for being so patient with our son and with me during this process. I am grateful for your positive attitude, and really appreciate that you always find something to praise Tony for. Thank you for working with us to help prepare him for a transition back to clinic, I can see each week how much care and consideration you have put into planning for both that and transitioning me out of his NMT sessions. I am touched that you care about his comfort when it comes to masks. We are so very grateful for you and the work you have been doing with our son and our family.
Fabulous Team Member at our Local WalMart Pharmacy
Thank you. When we came in this past Thursday and one of our scripts wasn’t filled as previously promised, I really appreciate what you did in expediting that and for being so understanding of our needs as we were working with Tony on that trip. He was already angsty because he saw someone with french fries at the McDonald’s up front and, having tried to raid their bag, felt like that should have been the whole purpose for our trip. I know you’ve seen us before so you may remember a little bit about how interesting things can get when he’s not feeling happy with an unexpected wait. We were just trying to get what we needed before his denied desire for crispy fried treats caused him to loose all interest in cooperating, so again, thank you. And thank you for not commenting when he kept trying to stick his head under the plexiglass partition 🙂
Some Reading To Consider
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“Why ‘Special Needs’ is Not Helpful,” by Rebecca Cokley
I am not recommending any longer pieces this month because I really believe it is important for those of us who might not be aware to read these articles and reflect upon how we can apply them to the way we think and discuss disabilities matters within the community. As a mother, I often tend to use the language others are most comfortable with when I am trying to talk to them about my son. Both the terms ‘special needs’ and ‘differently abled’ were first used in my presence by either special education professionals or therapists working with my son. I know I personally will use these terms sometimes when I am talking to people in the community because I have noticed that they tend to view them as being a more polite way of talking about my kiddo and I often just don’t have the energy or the time while I am trying to help him navigate a public space to do anything but go with the peace-keeping flow.
So in pondering this, I feel like the best place each of us can start is with how many disabled individuals themselves perceive the term “special needs.” I think it is also fair to say, and I mentioned this last year when I was discussing the term “differently abled,” for someone like my son who has some differing abilities that are not considered less-than, and who has some more specialized needs that typically are not seen within the community, I personally am not offended by the use when I encounter it in others. Logically I look at these terms and I see in them things that apply to our son, but I also recognize that it is incredibly important for us to be aware of language we are using that can leave others feeling diminished or patronized. You can click on the titles above for links to the articles. The first one is written by a reporter, the second is written by a disabled activist and little person, and I am including a link HERE to an op-ed piece she did for CNN a few years back that I feel adds some important insights into the ways the systemic perceptions around terms such as “special needs” and “differently abled” can contribute to a culture of ableism.
“Postural Orthostatic Tachycardia Syndrome,” by A.K. Agarwal, R. Garg, A. Ritch, and P. Sarkat
When my PCP prescribed Lexapro last week, I looked up the side effects and was concerned about an initial mention that individuals with certain heart conditions shouldn’t be using that medication. A quick look on the National Institutes of Health website turned up this article, which mentions a possible therapeutic benefit for patients with POTS, which is a condition I have. I am not expecting any of you who do not have this condition to read this article. What I am asking is that you remember this and share it with anyone you may know who has POTS. I know this was never mentioned to me, and it may not be the first thing somebody else’s medical team is thinking of to try either.
That being said, I also think I need to make it clear that I had to stop taking this medication four days in, and I think it is important for you to share what I say here also if you are sharing this article with someone you know who has this condition. What I noticed was the first day an immediate improvement in my heart’s ability to maintain a steady heart rate without rising over time as I exercised that was similar to what life was like for me before I developed symptoms for POTS. But it left me far more wired than my adrenaline was, I litteraly couldn’t get to sleep, and had to take the max dose of hydroxyzine Hcl for me as given by my allergist to overpower that enough to get 4 hours of sleep. By comparison, it only took four the day before I started the Lexapro to power through my adrenaline burst and sleep for 7.5 hours.
By day two I was super irritable, and by day three my heart rate was rising across the board and was going up to 103 in bed at night. By day 4 a massive fog of anxiety descended that was like caffeine on steroids and my heart rate continued to rise (highest spikes happening 3 hours after I had taken the Lexapro) and my heart rate was rising during movement in ways it hasn’t for a few months now after my intensive focus on lifestyle changes. Now, it is important for me to note that typically when I am feeling anxious, there is pretty much always a reason, and most people would agree it’s something to worry about. Having a sense of anxiety this unrelenting and intense unrelated to anything I was thinking or feeling in and of itself would have been rough, but the raises in heart rate and decrease in movement tolerance were deal breakers, especially when coupled with the inability to sleep.
Once I stopped the Lexapro, my heart rate immediately returned to normal. I suspect my body probably has a happy place for that medication when it comes to my POTS that is a significantly smaller dosage than the 10mg I was prescribed. My body can be very sensitive to medications. Some things, like Fluconazole that are well known for their side effects go over in my system like a massive yawn…no fuss, no side effects, no problems. Other things it gets dramatic pretty quickly. So my point here is everybody’s system is a bit different. This may be helpful, it may be helpful only with dosage tweaking, and it may not be helpful. Each person with POTS seems to respond to things a little differently. But I think it’s important to share, because it is so much cheaper than the medication (Corlanor) that was originally suggested for me. I don’t know many people that can afford that medication (we certainly couldn’t), to be honest, and you probably don’t either. So I share this so that you can too if need be.
