Tag Archives: advocate

Let’s Challenge ANOTHER Word, Shall We?

Surprising?  HA!  I doubt that – to read that I challenge yet another word associated with Ben’s diagnosis and life journey.  This challenge isn’t like my internally brewing frustration for the use of “retarded” but instead a question of why a word is used when referring to my son (or your son or you daughter).

The word is SEVERELY

  • to an undesirably great or intense degree.  “our business has been severely affected by the slowdown”
  • strictly or harshly.  “the culprits will be severely punished”

Most of those words do not apply to Ben’s condition.

Undesirable presents as choice.  He condition is undesirable?  Well duh.  Can we change it?  Nope.

Strictly or harshly?  Strictly implies structure.  HA.

Harshly.  Not at all. Neither life nor condition are harsh for Ben.  Maybe on the rest of us but we’re not talking about “us” – it’s about Ben.

Yes, maybe intense degree applies.  1/6.25 billion.  That’s intense.  11% of a cerebellum.  Also intense.

But can anyone actually tell me that when they hear the word “severely” they’re considering the intensity of a condition and not the effects of it?

I would prefer the word SIGNIFICANT to be used.

  • sufficiently great or important to be worthy of attention; noteworthy.  “a significant increase in sales”
  • having a particular meaning; indicative of something.  “in times of stress her dreams seemed to her especially significant”

Sufficiently great or important to be worthy of attention.  Yes the condition is and yes, Ben is.

Indicative of something?  Of course; significant developmental delays?  For sure.

Severe creates a shadow of negativity over Ben’s life and over his diagnosis; it doesn’t have to be looked at it that way.

Ben’s life and world is far from harsh – it’s bright, fun, happy and centered around him.

That’s of particular meaning if you ask me.

World Rare Disease Day 2015

CARE ABOUT RARE

Ever wished you could do something to show you care about rare?  To spread awareness and provide opportunities for education?  Today is that day!  And it’s ridiculously easy!

Wear BLUE JEANS!  When someone tells you how hot you look – tell them why you’re wearing them.
Because you know someone living with a rare disease.

When someone else is wearing blue jeans, ask them if they care about rare?
If they don’t know what you’re talking about – let them know that just by wearing jeans on February 28th, they too can spread awareness.

Whether you know someone affected by a rare disease or know someone through a grapevine of connections or read an interesting blog on an individual – it’s all the same.
It’s about spreading the word.
We all have blue jeans.
We all wear them.
So why not promote a great cause at the same time?

BLUE JEANS FOR RARE GENES!

I love to see the pictures of everyone celebrating today – please find me on Instagram @k_haller and tag me or on FB!

I appreciate everyone’s support in showing the world just how beautiful rare is!

Concerns regarding FSCD funding process – a letter to MLA’s in the disability sector

Good morning!

I am writing you this morning as I am extremely frustrated by the approval and decision making process regarding services requested for my son.  We, as a family, absolutely do not ask for anything more than we need or our son requires and ensure that we do not abuse the system put in place to support children like ours but we have come to a standstill with our contract with Family Supports for Disabilities.

Our son Benjamin has a rare neurological disorder called Ponti Cerebellar Hypoplasia Type 3; I’ll spare you the details as I’m sure you will just Google it if you’re interested but what it has meant for us and more importantly him, are countless nights of not sleeping.  I’m not exaggerating when I state that our child does not ever sleep in a pattern or that he is up for hours at time each night.  In addition to that, he is supplemented food through a gastrointestinal tube which puts him at risk for aspiration and choking due to reflux and sensory issues.  For the past five years, my husband and I have tagged off and on to support Ben at night, taking turns sleeping the couch, watching Elmo with him for hours at a time or simply just playing with him but it’s come to a point where we are feeling burnt out.  I feel we have made a good run at trying to do it ourselves.  But the worst part of our exhaustion is how it relays to Ben; he definitely can feel the frustration when he’s been up  since one in the morning and we’re tired.  We try our best to be patient and accommodate him but for lack of better word – we’re pooped.  This is not a normal circumstance. We want to be the best parents for him, provide him the best quality of life and to ensure that he’s happy and to do that, we’ve applied for over night respite assistance and have even registered and qualified for the service from Nurse Next Door (a private company) to watch Ben through the week 10p.m. – 6 a.m.

However – FSCD will not approve the funding needed which I do not understand.  How is my child not considered as valuable as they funding requested?

I understand that FSCD may look into using the Supports Intensity Scale for future assessments and when that happens, Ben will without a doubt receive the financial supports he requires based on his medical and behavioral assessment alone but until then, I don’t believe that asking for overnight respite for him is much to ask; it will allow us to be our best for him during the day when we can engage him in his community, include him in social activities and allow him to have fuller days.  How is that not worth what we’re asking for? 
Please point me in the right direction…. a direction that allows us to provide nothing less than the best support possible for our son.

Thank you for your time and consideration.

Regards,

Kristi Hall-Busque