Tag Archives: disorder

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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Time to change my speech up a bit

Whenever Francois and I have a discussion about Ben and his sleep patterns, we are always asked how we manage.  Our answer is the same and something a long the lines of “It’s been six years of not sleeping, you get used to it.”  I think that speech is has become a little less convincing.

We are used to it but our bodies are not as well adjusted as they were even a year ago let alone six years ago when Ben was a baby.  Our bodies are tired, our patience well worn and my eyes are suffering in the form of big black bags I cannot get rid of.  We used to tag each other out but now, we take turns sleeping on the couch with Ben so the other can sleep.  Three all nighter’s in a row used to be a rare occurrence and now it’s become the norm.  Ben has fallen asleep at nine and then up by one every night since Wednesday.  The past three nights, not going back to sleep at all.  It’s beginning to take its toll.

We base many of “tomorrow’s decisions” on his night because it directly influences our night and even though we try to be considerate of each other, it’s hard not to want to punch your spouse in the face while they’re snoring away and you haven’t yet been to sleep.  We started with two nights respite in October and I think it’s time to up the anti (already have the doctor pushing for it anyway); maybe we’ll get some sleep in the new year?

Another thing to add to the list…

Last week, Ben was put into his standing frame in his AFO’s like always and lasted about thirty minutes before he had had enough.  When he was removed from his stand, the muscles in his ankle and calf on his right foot started spasming and continued to do so for about an hour and a half.  Scary stuff.

This morning we met with our Physical Medicine doctor, Dr. Watt (who is very cool!) and he informed us that this type of spasm is actually called Clonus.

Clonus as defined by Wikipedia is:  a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyper-excitability). Unlike small, spontaneous twitches known as fasciculations (usually caused by lower motor neuron pathology), Clonus causes large motions that are usually initiated by a reflex. Studies have shown Clonus beat frequency to range from 3–8 Hz on average, and may last a few seconds to several minutes depending on the patient’s condition.

 

Sounds fun right?  Hardly. 

I am definitely starting to get the hang of this diagnosis stuff; I predicted that it was a neurological thing.  And in that of course means we now have to schedule a follow up appointment with Ben’s neurologist. 

It’s definitely that time of year – November through February is appointment time.