Angelman Syndrome: "Must Be Nice!"

Recently, we heard that a member of our rather small community said to a few people
"Must be nice, getting all that money from the government for babysitting and supplies! I have to WORK for MY money!". (in reference to the respite funding we get for Liam)

This article is to give a little insight into why families of the severely handicapped get some support from the government;

First of all, it is important to realize that not all families are fortunate to receive funding or support from their communities or governments; We are extremely fortunate that the county of Renfrew, the town of Whitewater Region, the village of Beachburg and the Beachburg Public School are all cognisant of the difficulties and challenges of living with and supporting the severely/multiply handicapped.

For those wondering what kind of support these people seem so jealous of, it's not a whole lot, in the grand scheme of things:

  1. About $5,000 a year for respite funding
  2. About $600 a month for the handicapped children's tax benefit
  3. A drug card for seizure medications, sleep medications, insulin
  4. about $800 a year for diapers

That's about it. Some people might say that that's a lot of money, especially on a monthly basis in a small village where the costs of living are so low, but I'd like you to think about a few things:

1) Respite funding: We pay our wonderful, angel of a respite worker, Jean, $10.00 an hour to watch over our kids so we can do the basics of life, like getting groceries, attending doctor's appointments and occasionally, just getting out alone. Some people make the snide remark
"Oh, must be nice, free babysitting, when the rest of us have to pay for it, or take our kids with us!"
They forget that bringing a child with angelman syndrome out to do your groceries is no where near the same as bringing your average six year old with you:

  • He's in a wheelchair, which makes pushing a grocery cart and a wheelchair at the same time somewhat difficult, to say the least.
  • He's extremely orally motivated: By this, I mean everything he can get his hands on will go in his mouth, especially plastics: If you can imagine moving through a crowded grocery aisle with your child ripping down half the displays of Doritos and Hostess chips, you can imagine what that feels like when you've got to pick it all up again.
  • A child with spinal and leg issues, sitting in wheelchair for extended periods of time is not going to be comfortable or happy for very long. Since angelman children are non-verbal (i.e. they can not speak), this means a lot of crying, screaming and squirming to try to get out.
  • Angelman children are prone to both seizures and vomiting (our son certainly is) - Dealing with your son in a pool of his own vomit while he's having a seizure in the middle of Loblaws (a major grocery chain here in Canada), is NOT anyone's idea of "must be nice"
Finally, we have to pay her wages up front, then apply back to the government for the money to be reimbursed: If it's a bad month with low income/high expenses, then no respite!

2) $600 a month tax benefit: It's no big secret here in Beachburg that, on average, we run our house on $1,300 a month: Groceries, mortgage, insurance, gas, etc. I like to brag about it to my big city friends, simply because the move to Beachburg has been so good to us socially, spiritually, financially, just generally all-around an amazing change in life.
What we do not tell people, however, are the other, non-normal costs associated with our kids
Why? Because nobody likes a whiner, because we're not complaining about it: After all, they are our children, we love them and we do what needs must and finally, we're not looking for pity: Everyone has their own issues with their own families: They don't need to hear us piling our problems on top of theirs.
However, since some people seem to think we're getting money from the government for "free", here are a couple of things and costs to think about:

  • Clothes: An angel's clothes do no last anywhere near as long as a "normal" child of a similar age: The vomit, diaper leaks, drool, spilled food, etc, combined with all the washing means you replace your angel's clothes a lot. Before replacing them, however, they do get washed... A LOT... Sometimes as many as five changes of clothes in a day due to all the little accidents, drooling, food spilling, vomiting, diaper digging, etc. Related to that are higher utility bills, more laundry soap, more sewage costs (i.e. septic needs to be pumped far more often than an average household in the country)
  • Furniture: As you should have guessed, our angel is in diapers at the age of thirteen. This is very, very common for a lot of mid to lower-functioning angels; Liam likes to diaper dig: For those of you not familiar with the term, this means to reach his hands into his diapers and smear the contents around wherever he happens to be. Yes, we've tried all sorts of different clothing to prevent this, but nothing is fool-proof, especially with an angel. This means that carpets, couches, chairs, floors, etc, need to be cleaned a *lot*. After all, aside from obvious health issues, no one likes the thought of one's living area reeking of feces and urine. This also means that your carpets and furniture have a shortened life span, needing replacement, in addition to a hideously high cost of cleaning materials. (The people who make Mr Clean, Lysol, Pinesol and Clorox Bleach just LOVE us: We've probably paid their pensions by now :)
  • Food: Some of this is our fault, some of this is unavoidable: There is an increased food cost, simply because Liam likes to make his way into cupboards, shelves, refridgerator, etc, and pull down and open everything he can reach. There's a lot of stuff on our compost heap that ended up not because it spoiled from lack of use, but because it had been mashed into the carpet, along with a dozen eggs and the contents of a diaper. For our particular situation, we also have a daughter who is a type I diabetic: This means low-sugar, low-carb stuff. You'd think less sugar means less money, right ? Wrong! More expensive, by far :(
  • Carpet / floor covering: Liam's bedroom is carpeted with cheap, indoor/outdoor carpet. However, he has his accidents and, fairly often, he simlpy gets out of his clothes and diapers and does his business on the floor if we don't catch him in time. In addition to odour issues, urine is acidic it eats away both carpet and floor varnish. So far, we have replaced to complete carpets downstairs and re-sanded and varnished twice. Currently (Dec, 2009), both rooms that Liam uses are near the end of their usable life-cycle for floor coverings: Guess what ? They have to be replaced. Again. (December, 2011 Entire downstairs flooring re-done in vinyl for ~$2700: 3rd entire floor change in 10 years)
  • Water/Hydro/Gas
  • While we are fortunate that we pay a single water bill no matter how much we use, we do still pay for electricity and natural gas to heat it. Liam takes a lot of baths. He doesn't (and cannot) eat with a fork or spoon, he crawls on his hands and knees and, as above, has numerous diaper accidents. Despite what his school may suggest, Liam, on average, has two to four baths a day, depending on his mood and what he gets into.
  • Lost wages: Any angel parent will tell you that we miss out on a fair bit of work because of doctors appointments (Liam has to make a 300km round trip on average, once a month, to Ottawa, for his various doctors), panicked school calls for seizures, vomiting or smeared diapers. It's a fact of life and our employers and clients (for those of us who are self-employed) have to understand that their business and profit come second to our children's special needs.
    Unfortunately, just as we have to deal with the realities of dealing with special needs children, businesses have to deal with their realities, too: This means lost contracts, lost wages and, unfortunately, loss of employment.
  • There are a ton of other, little expenses that really add up over time. I'm not going to list each and every one of them, because Angel parents already know what I'm talking about, whereas if you're not an angel parent, you just have to walk a mile in my shoes (or a kilometer, for fellow Canadians :) to understand what I mean.

3) Drug card: Anyone who's had to take medications for an extended period of time knows that prescription drugs are NOT cheap. Many Americans don't realize this, but in Canada, while our health care is paid for by our taxes, our prescription drugs are not. Seizure medications are expensive!!! So are the various sleep aids (our son has a cycle that is approximately three weeks of staying up from 11:00 PM to 4:00 AM crying and screaming unless Dad is up with him, and two weeks of relatively normal sleeping.)

4) Diaper money: If you think $800 covers anywhere near Liam's diapers for a year, you're on some pretty hefty medications, yourself!

What it all boils down to

Anyone who knows me knows that I'm no big privacy hound; I'll preface this with a little info from Statistics Canada: The average income in Beachburg, Ontario, Canada (Click here for the Statistics Canada report) is CAD$31,101 per year, before taxes.
Not a whole lot, eh? But really, you can live reasonable well in Beachburg on $15,000 a year if you're single, or $24,000 a year if you've got a child or two. Cost of living really is that low, here.
Now, with that being said, I make roughly $65,000 a year. You'd think that we would be living in the lap of luxury, right? After all, we're making roughly double the average income of our fellow citizens in this town - we should be living like kings, right ?
(Update: Since writing this, I have undergone a major surgery and radiation treatment for cancer. I am still under on-going cancer watch. Due to my extensive medical needs over the past, I have lost a fair bit of business, so my $65,000 a year has shrunk to $45,000 a year) - Them's the breaks.)
If you come by our house, though, you'll see that we are no better and no worse than the average Beachburg citizen: No luxury items (well, okay, we do have a big TV and a leather couch, but those were a treat after many, many years of living poor: Even then, those two items are rent-to-own). With the exception of the couch and the children's bunk bed (bought on sale at IKEA for $150), all of our furniture is second-hand. Our van is second-hand; Our cutlery and dishes are mostly the cheap stuff you get on sale at Canadian Tire; Most of our clothes we buy at Giant Tiger or Zellers. Our house is a little run down and there are a million little (and some big) rennovations that really need to be done.
(Update: Since writing this, The leather couch has long since disappeared to the dump - victim of food and diaper accidents. The big TV in our living room gave up the ghost - Liam liked to stand against it, bang his head, drool, smear food (and other stuff) on it - it finally went to the Big Electronics Store in the sky)

This isn't to say we're living in poverty: Far from it: Our life style is pretty much the same as anyone else in the village: Sometimes it's a tight month and we stay around the house without doing much; Sometimes we have a little extra money and my wife and I treat ourselves to dinner in Ottawa or a movie in Pembroke. Heck, we even got married, recently (after being together fourteen years) and the whole wedding was done on a budget of under $3,000.

The point of the above is to show that even while making roughly double what our fellow villagers make, our lifestyle is the same: Why? Because of the costs associated with raising a deletion-positive angelman child, a type I diabetic child, along with a (so far) healthy four year old.

In case anyone thinks that while we're living as the average person with a ton of money in the bank, or millions in RRSPs; think again: Right now, there's about $600 in the bank till the end of the month, my RRSP is about $1500 total (My wife used to have about $5,000 in an RRSP for herself, but we needed to cash that in years ago to pay our portion of a feeding pump and the food that Liam ate ($5.00 a tin, 5 tins a day - it's the only stuff he wouldn't throw up at the time). We've got perhaps $2,000 saved up for our other two kids' post-secondary education and zero saved up for Liam's long-term care. Still think we're living like kings or secret billionaires ?

Let us also be abundantly clear on one other thing: I would trade EVERYHING I OWN, including a limb from my own body, if my son and daughter's health were that of everyone else. I would do it in a heartbeat.

In conclusion

In conclusion, if you are one of those people who look down on a family receiving a little help from the government, I'd like you to think of two things:

  1. Any assistance received doesn't cover anywhere near the actual costs of keeping the multiply handicapped alive, well and healthy as can be.
  2. Next time you start a sentance with "must be nice" - finish it with "... to be so fortunate as to have healthy, happy children of my own" - Because that's what I think, often enough: "Must be nice to NOT have to worry about seizures, hypoglycemic comas, vomiting, drug reactions, following an ambulance into town with your child in it, regular trips to the hospital, worrying about what's going to happen to your totally dependant child when you're gone or even wondering if your seizure-prone child is going to be alive when you wake up."

Think about it.

-Marc Bissonnette
Dad to Liam, 6.9 years old, Angelman Syndrome, Deletion positive (DEL +)
Beachburg, Ontario, Canada.
June 26, 2005

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