PSP Association
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"But Dear, you're 21!"

I've waited since Monday to calm down enough to write this post in an eloquent and supportive way versus the rapid-to-slow-to-no boil I've been feeling this week, and say something inappropriate.

I'm writing this for ALL individuals with various illnesses and disabilities, some of those which can't be seen or detected at first glance unless you've spent a little time with the person. Sometimes as little as 5 minutes is all it takes.

And to the caretakers of these individuals who have the often unpleasant duty of arranging appointments, transportation, etc. and deal with a person 'just doing their job' on the other end of the phone.

Both of my girls were born with a genetic disorder which it's acronym is O.T.C. Google if you wish; it's complex; chances are 1:80,000 tho now they believe some of the SIDS deaths can be attributed to this awful disease. It's not curable and no effective treatment but to limit protein in your diet.

My oldest daughter Katy, has always been more affected and brain damage from it's toxicity left her with a variety of disabilities, although after years of hard work, she's high functioning not to mention the bravest person I know.

She's been flirting with high blood pressure since junior high school; all was carefully documented. She was referred to a kidney Doc at Mayo a handful of years ago who did some BP testing on her but it was fine that day. He said to watch it tho, as OTC has a way of going after the kidneys and/or high blood pressure in a child or young adult usually starts with a kidney problem.

Friday, May 3rd, Katy had a very long day with a kidney doc because her BP is consistently high (she's not overweight). They did blood work and hooked her up to an automatic BP cuff that went off every 15 minutes, then had to spend the next 6 hours walking around downtown Rochester and could not nap. (I didn't go; no way because of my PSP could I endure that event.)

Turns out after they met with the kidney Doc who was able to read 6 hours worth of readings in a few minutes, she does have high blood pressure. Is it due to OTC, God forbid? Or diet and lack of exercise? The next step is to get a call from Mayo with a date for much radiographic work on her kidneys.

Monday of this week, the phone rang; caller ID indicated it was Mayo. Katy doesn't like talking on the phone, but as much as I can, I encourage her to push her boundaries; works well some days; others not so much.

I answered the phone and they asked for her. I told Katy it was a call from Mayo and she eagerly took the handset. Within seconds, I saw her eyebrows furrow together, her body go rigid, and that 'look' I've come to know that means she's in over her head.

The Mayo person was loud - I could hear her easily tho I wasn't on the handset - and she was talking so rapidly, she wasn't making sense. Anytime Katy would try to interject with a "can you slow down" or a "I don't understand!", the woman kept going, rapid-fire.

I told her to let me talk to the Mayo person. Enough was enough. Katy had tipped over the line of being able to manage and I was frustrated as well.

When she told the Mayo person she was going to give the phone back to her Mother, she said, "BUT, DEAR, YOU'RE 21!" Grrrrrrrrr!

As soon as I got the handset, the Mayo person just kept talking as if there was no transference. When I got a word in edge-wise and told her I didn't appreciate how she dealt with my daughter, that was the end of the call. Period. No chance to say more. Like I wanted too. I should've, but didn't, called and reported her. Why didn't I? I'm tired. I need to pick my battles. Over the years raising these girls, I've stamped out fires, slayed dragons, lost some battles, but won important wars on their behalf. It doesn't mean I won't do it again.

What I want to say to everyone, is my heart goes out to all of you, no matter if you are the one being cared for, or the caretaker. The simple tasks, like making those sometimes tedious calls, or receiving them, can turn quickly into a lot of work, requiring even more patience than we might have. Or not. Sometimes I find myself, or found myself, daydreaming about just losing it with one of these insulting, insensitive, ignorant, people, but don't. At least not yet:)

And, this type of thing, whether over the phone or in person, has happened many times over, and will do doubt continue to do so. But that call just really got to me; I'm just really sick of it.

There is just no place in this enlightened society for a person to be degraded by someone 'just doing their job'. Or any neuro-typical person or persons to degrade, judge, put-down, stare, or say hurtful things to or around individuals that have special needs. It angers me. Perhaps I'm still too idealistic. But, I'll take it, even if it stings a bit.

11 Replies

Hi Judy,

I share your frustration and it is particularly galling when the individual concerned is a healthcare professional or working in the field. I think it is reasonable to expect that they have a greater awareness than the general public but alas they often don't.

I work with Deaf people and the hidden nature of hearing loss means that they experience similar discriminatory behaviour. As a professional I bite my tongue but I have so often wished I could 'let rip'! I completely agree with your last paragraph - there is no place for this.



Thanks for your reply and understanding. I know this was not a new experience for me, Katy, or anyone who uses this site, but that just really stuck in my craw. Not in a good way. Too much of it, too often. Tho I know it's true, I find it trite to hear 'there's one in every profession', or 'they need to find a different line of work'.

I have my bad days too and perhaps the person who called from Mayo was having a bad day too, but my impression was the whole thing was 'a task she needed to cross off' without the human factor.

I can empathize with hearing-impaired people and totally believe they receive various and similar discriminatory behaviors directed at them and are highly misunderstood. I am sure there are a great number who appear neuro-typical and healthy until it comes time to communicate with them out in the general public, then all bets are off.

I believe my flame was lit years ago when it comes to ignorance, bias, discrimination, and plain cruelty, when my youngest sister, Jennifer, was born in 1971. She has Down Syndrome.

I found out when my Mother called my Dad from the hospital. I could only hear his side of the conversation, but it was loud & it was foul. To sum it up in one sentence, he said "There is no greater curse on earth than having a Mongoloid child!!".

I kind of knew what that meant, but not really. I just remember running out of the house in a rage at my Father and kept running til I had nothing left in me. I was so very angry that a vulnerable child, any vulnerable child, could be referred to as a "curse" not to mention the no longer used derogatory reference.

In 1971, these type of situations were hush-hush and quite taboo. She was a premie & came home at 3 months. I was 14 and the neighborhood kids came to see her. Afterwards we all sat at the picnic table. Jeff, a few years older than me, snickered and said "So how does it feel to have a retard in the family?". My hand met his cheek with a loud smack before he finished his sentence.

To sum up, my Dad has passed away. My Mother still goes to court to retain paternal rights once a year. Jennifer was only in our home a few weeks during 1971 when she was placed in foster care. At that time, and given my parents problems, it was probably the right thing to do.

But that was 1971. It's 2013 and she's still there! Absolutely breaks my heart. I've seen her about a dozen times in my life, the last was in my 20's. My girls have never met her. My oldest daughter with special needs especially doesn't get it; the message she gets is we throw away those in the family who are 'different'. My Mother has shown an obvious disdain of her all of her life. She won't let us interact with us or make contact, and I can't get in touch, even thru her social worker because of HIPPA rights.

How crazy is this? So I've become a strong advocate for those with special needs over the years. So much has changed for the better since 1971...better support programs, raising a child with Down's in the family, so on and so forth.

Maybe my immediate family is an anomaly; I don't know. It just feels mean and ignorant to me. So while some progress has been made on tolerance and understanding, we have a long, long, way to go. I experienced it first had raising my daughter; saw and heard very ugly stuff while she was growing up within the family, the school system, and neighborhoods.

I've posted about this before but I am 100 percent sure it starts with us as adults. Can't tell you the number of times I'd have her out in public (her appearance is just a little different) and young children would tug on the sleeve of the shirt of their parent and ask "what's wrong with her?" and hear the response "leave her alone, she's retarded." or some other equally ugly comment. There was a family in our old neighborhood where the little girls would gather to play, including Katy's little sister, by less than a year. When she got closer to the house, one or the other of the parents would pull the shade down over the picture window so she'd go away, sometimes with my other daughter in the house who would also come home crying and upset. Absolutely heartbreaking sometimes.

I watched this play out in the school system as well; Katy was always in special ed; I volunteered a lot back in elementary school days. Numerous times I would overhear teachers being verbally abusive to kids with special needs; don't care if the kid was acting out; it's their job to try to soothe child if at all possible and if not, place them in a sensory room to wind down; it is not their job to call them ugly names, raise their finger to them, or give them a shove. Also was first had witness to para-professionals using the same behaviors. They are assistants to special education teachers, but the only requirement was a high school degree, so you can imagine the quality pool wasn't that great.

I did call those teachers out and/or paraprofessionals for their behaviors. Almost always denied it. Didn't make me very popular either but I didn't care.

I know I'm not telling you a thing you don't know, haven't been trained for, or experienced yourself, but these precious kids are like little sponge-mimics. They learn ugly, intolerant, unjust from us. Thank God there are families out there, single parent or double parent, who know what will be right in this world starts with what does or doesn't happen within our own 4 walls. And it has a ripple effect from there.

Thanks for allowing me to go on like this. Particularly since my PSP diagnosis & probable shortened life-expectancy, I worry for BOTH my girls, it's just that Katy's more vulnerable. It's a crazy, mixed-up world out there. I'm determined for the rest of the time I have to continue to emphasis self-advocation, tho they are at the age when they know everything:), life skills, coping mechanisms, and how to stay in the present and enjoy simple pleasures. Always comes back to that; helps ground a person and what's unpleasant disappears.


My dear Judy You write MOST beautifully. What a talent, so strange that I immediately felt a Bond with you. I have a daughter born in 1970 who has special needs but no diagnosis. She lives with me. My husband (her father) died 4 years ago he would have been 101 this year!!

I send you smiles and strength

Flicka x


Dear Judy

I so know where you are coming from. If one more so called "health professional" asks me one more time over the phone, rather than coming to SEE for themselves, one more time, "what sort of help/care do you or your husband need?" I will scream the house down!

I am sorry to all you health professionals out there but I truly believe some of you are only there to preserve your jobs.

Nil desparendum Judy.



It is nice to know there is someone else who feels like you 'will scream the house down':)

I must say out loud to my pets, a person, or myself, at least 3 or 4 times a week..."I'm choking back a scream...!"

Ever notice how that scream that wants to fly just sits there ready to fly at any second at the back of your throat with one more straw that breaks the camels back, or provocation at exactly the wrong time? And how much self-control it takes not to let it rip.

When I felt just on the edge of losing it, screaming for real, I'd jump in my van and drive to the middle of an empty parking lot and scream, scream, scream. Always left with a smile on my face and feeling 10 lbs. lighter.

But, now that I am no longer driving...I have to figure something else out. Suppose I could sit in my van in the garage and scream anyway, but then I'd be the 'crazy new neighbor in the neighborhood:)

My daughter, Katy, hung a plaque up in a visible place on the main level today. It says "Stay calm and carry on." I really like that. Still need a Plan B for a needed scream, tho...:)

BTW, what does Nil desparendum mean?



Dear Judy

I have just re-read your blog. My troubles are nothing in comparison.

Take care.



Hi Judy

Nil desparendum - its Latin for "don't despair" I think - spelt incorrectly here though.

We always used it less reverently though - as in nil carborundum - "don't let the b.....s grind you down"!!!!

The "Stay calm" wartime messages are on everything in the UK at the moment - its all to do with austerity and the so called "Blitz " mentality.

good wishes





I can't find mine on the computer! But sending one of from my heart Flicka x


I am also illiterate!! Did not check my last reply. there seems to be a stray of before the from. x


Thanks for your heart - heart back to you:) wouldn't know where to find it on the computer anyway. No worries about typos, etc. - I don't check mine either.


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