Tag Archives: opportunity

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 Ponto 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

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The Downside of Not Growing

The downside of Benjamin growing at such a slow rate is that when he does suddenly sprout an extra inch, his needs change dramatically.  This summer, Ben surpassed the “he’s still small enough to use an infant bucket seat” which was both awesome and scary.  Suddenly we needed new support equipment and FAST!

Hello fundrazr.com website!  In a week and a half we managed to raise enough money for Ben to get both a new reclining car seat which specifically addresses the needs of children with disabilities and for two new sleep systems (one for our house and one for the day home) – we are still incredibly grateful for everyone’s generosity.

Bug loves his car seat!  We had been borrowing one from his day program so we already knew how well it fit and how to adapt it properly but it still makes me smile when I watch him look out the window at the momentum passing by; I know he cannot really focus or see anything in particular when we’re moving but how fabulous is it that he’s even aware of outside (on the plane to Jamaica he also watched out the window).  Thank you for your help in obtaining this critical piece of equipment!

Now we’re onto sleeping and borrowing a Dakota chair from Home Care.  I have never seen him sleep so comfortably or stay warm like he has been the past few nights.  We can’t wait to meet with the company and get one made specifically to his size!

Dakota Chair Britax Car Seat Dakota Chair Britax Car Seat

Music to his ears

On the long weekend, we were honored with tickets to the Edmonton Symphony Orchestra’s Symphony Under the Sky event in Hawrelak Park.  It was set up by one of our Wish Granters from Make a Wish, Katherine,  and turned out to be an absolutely amazing experience.

We are never quite sure how Ben will manage in large group settings but as always, he blew us away.  When the music started – Benjamin went still and would listen intently.  For nearly two hours both Sunday and Monday, he sat pretty still, listening to the ESO perform a variety of songs and melodies. Francois and I both noticed when Ben recognized a song, as he perked up a little higher and his movements settled.  It was truly eye opening for us and proves, as in history, just how good music is for the soul.

Thank you so much to Mike from the ESO for allowing us to attend such an incredible event as your guests!

Purposely Exlcuding My Son

This past Saturday, we loaded the babes up in the van and headed to Francois’ parents for the afternoon.  We also planned a play date with the twins and were excited to see how the babies played in the pool together.

BUT…

We left Ben behind. 

And on the way to the pool (which is only a five minute drive) I bawled and felt sick to my stomach, so bothered by the fact that he would not be joining us on this cousin play date.  I felt horrible because Ben loves to swim.  He loves to splash, lay his head in the water and listen to the sounds of the bathtub or pool, loves to kick, laugh and watch other kids swimming around him.

We’ve left him behind before, taking Avery and Poppy swimming for a “girls date” with the parents and leaving Ben with a set of grandparents.  (Don’t get me wrong – I know and truly believe wholeheartedly that Ben gets just as much out of one to one time with all of his grandparents and loves when he gets their full, undivided attention) but somehow the idea of him missing out on play date with with Callie and Swenton, felt much worse than him missing out on swimming with his siblings.  To others it may seem like the same opportunity but to me, as his parent, it felt and continues to feel separate.

Over the past few days I’ve tried to decipher my own emotions around it and ultimately decide on why exactly it has been eating at me this much and I think I’ve narrowed it down to choice.  Like with so many other things in his life, Ben does not have a choice when it comes to swimming as unfortunately there is a best and worst case scenario in this department.  We have learned that from experience, swimming does not jive well with Ben’s health.  No matter whether it’s winter or summer, freezing out or hot as heck, Ben will get sick afterward.  He cannot be submerged in water for long periods of time.  It’s inevitable.  We have tried wet suits and water shirts, toweling him off quickly and completely when getting out of the pool, wearing a toque and sweat clothes, turning the heat up in the car, scouting out heated pools… it does not make a difference, Ben still manages to get sick.  Every. Single. Time.  And not just a little cold with a running nose sick but entire body shut down mode, will not take foods orally, double ear infection kind of sick.

It isn’t justifiable to his health and over all well being to take him swimming.  We have to consider the bigger picture.

While he loves to swim and has shown us in many different ways that he does (verbal, physical, emotional) the outcome is predetermined.  I don’t even feel the sense or urge to argue against it anymore but it does make my heart hurt and my eyes tear up.  Over time, I’m sure I will become just as desensitized to this as I have with everything else he “can’t do” or “can’t participate” in because of whatever reason at time but it still sucks.  There is no other word for it.

I will however remain hopeful that one day, his health will improve so much that we can try again.  And we will continue to provide as many opportunities as we can (beach days, splash parks, water tables, sprinklers).

In the oh-so-famous words of one of my nine year old’s favorite singers – “Never say never”