Children with Autism Grow Up, Too

My heart is breaking right now.

Back in late 2004, I stumbled onto "birth boards" on Babycenter. I had never been on an internet message board in my life, but for some reason, I joined the board with a group of other moms-to-be who were due with babies at the same time as mine. Many of those moms became close friends, and I'm still friends with them eleven years later. We've been through birth, death, job loss, marriages breaking up, remarriages, younger siblings, and now we're heading to puberty.

We've literally been together in sickness, and in health.

And in such a large group of moms, of course there is a far-too-large percentage who have children with Autism. We run the full spectrum in our group, which means that there are some whose children are at the "lower functioning" end, such one child I'll call "A." This is where my story really begins.

You see, as I said earlier, our kids are now getting to that really fun stage of childhood: puberty. And puberty is hard enough on a neurotypical kid. Now imagine going through all of those hormonal and physical changes without the ability to express your wildly swinging emotions. It's not unusual for kids like A to become physically aggressive, and to become a danger not only to themselves, but to those around them: teachers, friends, family. This is exactly what's happening with A.

So what is a parent to do when their child can no longer be physically controlled? When younger siblings are afraid? When parents are being injured? What should that parent do when they are honestly afraid to have their own child in the home?

There's a lot of talk about how important early intervention is when it comes to Autism. And it's true that it's important, but for some kids, it simply won't be enough. And here's a point people seem to forget: kids with Autism grow into teenagers with Autism, and eventually into adults with Autism. The need for programming doesn't end at the age of six (like the Ontario Government thinks - although I will say that A is not an Ontario child). If anything, the need becomes greater with age.

But the therapies needed - including, in some cases, residential programs - don't come cheap, and unless you can afford to pay out of pocket (I've often heard $60,000 per year quoted) or in the US you have a low enough income to qualify for medicare, you are on your own. You have your usual bills to pay, your other children to feed, clothe, and house, and you're looking at coming up with an extra $60,000 or having to live in fear in your own home.

I know an Ontario family that somehow managed to pay for one of those private schools, and saw a huge improvement in their son. Then, without any warning for the parents, the school folded, and the children - some of whom had come there from overseas - were just sent home. The family in question was so determined not to lose the progress that their son had made that they hired back the teacher who had been working with their son, and re-opened the school. THAT is the kind of desperation that parents face when trying to get help with their older children with severe Autism.

I'm stuck watching A's mom as she posts pictures of things that A has broken, and most recently, a picture of her face, battered and bloodied after A head-butted her. I worry for her, for her other children, and although I'm glad to see her friends rallying around her to try and provide what help they can, I'm infuriated that they are facing a two-week wait to get an inpatient treatment bed for A, and no emergency help from CPS or any other agency.

How is this reasonable? How is it that no one talks about how to best help these children as they get older?

I don't know what to do, so I do the only thing I can: I write, and hope that maybe somehow this will the attention of someone with the power to change things. Maybe awareness will help. Or maybe I'll just continue to watch as my friend continues to live in fear of her own child.

Please - don't let it be the latter.


*NOTE: I am not an Autism expert by any means. If I have used terminology that is inappropriate, or given incorrect facts, please let me know and I will gladly make corrections.

Nanny is the New Niquab

Distractionary Politics at its Worst

Am I surprised at how little time it took for a "scandal" to emerge about Justin Trudeau. Um, no. In our current political climate it's more surprising that it took this long.

But this is the best they can come up? Really? He said that he wouldn't accept UCCB because he didn't need it. But now taxpayers are paying for his child care.

Now, I don't spend much time on social media anymore, but I'm told that it was the CBC who originally broke the story. If true, it makes it all the more disappointing the way that this was spun. And believe me, this was spun.

Trudeau Children's Nannies Being Paid for by Taxpayers

Justin Trudeau Billing Taxpayers for Nannies is Hypocritical, Lisa Raitt says

"Rich" Justin Trudeau Should Pay for His Own Nannies, Rona Ambrose says

Funny thing that none of this hew and cry wants to mention? The Prime Minister has always received an allowance for running his household. This is not new. Each PM then chooses the staff that fits his (or her) family. The staff usually includes maids, groundskeepers, drivers, and yes, child care. No one has said that the Trudeaus are exceeding this budget. So is the expectation that he should use less of the budget than any other Prime Minister would be expected to, so that he can pay for his own children's care, or should he just hire other staff that he deems unnecessary to use up the budget and then pay the nannies out of pocket.

And, let's look at this logically: if between the two nannies, they are covering all day, every day, that is 168 hours per week. Given that would mean they were each working 84 hours per week, I don't think that's possible, but let's just go with it. For the sake of math, let's say that it's half day shift, half night shift. So at the highest reported rate, it would be $15/hr x 84 hrs, and $13/hr x 84 hrs, which comes out to $1260 and $1092, or $2352 per week. That comes to $122,304 per year. Over four years, it's $489,216. Rich or not, that's a lot of money for most families. For taxpayers, it means you would be paying approximately $0.02 of your taxes towards the cost of the nannies over the four-year period.

By contrast, Stephen Harper spent $1.2 million shipping armoured limos for a trip to India in 2012 even after the Indian government offered to provide them.

But the truth is that Justin Trudeau is the second youngest Prime Minister in history, and he has a very young family. Stephen Harper's children were six and nine when he was elected, and would have been in school full-time, making childcare during the day, at least, less of an issue. The truth is, I have no idea who looked after them when they weren't in school, and I don't really care, as for all intents and purposes they seem to have been looked after. It's none of my business. Before that, no Prime Minister had required child care since the early days of Brian Mulroney's tenure. And he got flack for it, too, so he ended up calling the nannies "maids." Personally, I like "special assistant" better.


No one has said if Justin Trudeau did, in fact, donate his Tory UCCB bribe cheque to charity. No one has said that the Trudeaus used taxpayer money for their nannies prior to moving into Rideau Cottage. It isn't likely that they will when they move out (assuming that they even need child care by that point). But Prime Minister of Canada is not a "normal" job by any means, and neither is the (unpaid) job of being spouse of the Prime Minister. The Trudeaus can be called away on a moment's notice, for days at a time. The Prime Minister can be called on at any time day or night in the case of an emergency. And the Trudeau children deserve to have consistent, loving care when their parents can't be with them. We owe them that much.

PS - I have more to say about the REAL issues we should be looking at when it comes to child care, but I'll save that for another post. 

Measles: What Else is There to Say?

I have been trying not to get into the vaccine debate, mainly because I have friends who choose not to vaccinate their children, and whether I agree with them or not, I do respect and love them.

This used to be the only protection against measles.

I'm still hesitant to post this: I mean, there's already enough blogs on the subject, aren't there? Why should I post this and risk further alienating those who disagree with me? (I say further, because for the first time tonight I did speak up on a friend's post, and I was torn about whether to do that or not, too.) What more can I possibly add to the ever-mounting din of measles and vaccination debate?

Not much, I suppose. Except this.

I suspect most parents my age or younger have no real concept of measles. The first measles vaccines were around in the 1960s. In 2000, the year before my oldest child was born, measles was essentially eradicated in North America. Most of us have never seen a person with measles. Up until the glut of news coverage lately, I would imagine that most of us thought of measles as similar to chicken pox: a fever, some spots... just another childhood disease to check off the list in the baby book.

But it's not. Yes, it was once a common childhood disease that almost everyone got. But it was also the most lethal one. In the years leading up to the 1963 introduction of the measles vaccine nearly everyone got measles at one time in their life. According to the CDC, 3,000,000 to 4,000,000 people were infected each year, and approximately 400-500 of those would die. Another 4,000 were affected by encephalitis (swelling of the brain that could lead to permanent mental impairment.)

And it nearly killed me.

I was 11 months old, according to my mom (I obviously don't remember the details) and too young to be vaccinated. Mom says she's put a lot of the details out of her mind, which is understandable, I think, but basically she just remembers giving me alcohol baths, and praying that my fever would come down, because there really wasn't anything else she could do.

I can't imagine going through that with one of my children. I went through a life-threatening illness with my husband last year, and that was one of the most traumatic things I've been through in my entire life. If it had been one of my children, I don't know how I would have coped.

Roald Dahl dedicated his book, "The BFG" to his daughter, Olivia,
who died at the age of 7, after complications from measles.

The mistrust I see in my generation - of the political system, of capitalism (or socialism, in some cases), of "Big Pharma" - it's a systemic problem that isn't going to be cured overnight. There's no vaccine for it. This measles outbreak may convince a few anti-vax parents to vaccinate, but most of them, like my friends, will just dig their heels in even further. They will be even more convinced of the conspiracy behind vaccination. It won't matter to them that their children are more likely to be killed in a shark attack than they are to be injured by a vaccine. They are more likely to be struck by lightning.

It's true: you don't know that your child won't be the 1 in 10,000,000 to die from a vaccine complication. You also don't know that they won't have a reaction to peanuts, or eggs, or Tylenol, or any other number of things.

No matter how much we want to, we can't protect our children from everything.

You know what we can protect them from?

Measles.

Ben Reproduces! Twice!

Okay, so the whole "30 Days of Ben Mulroney" thing was sort of tongue-in-cheek, BUT, since I may now have dedicated Ben fans watching this blog for all things Ben, I thought I should mention that Ben and his wife, Jessica, welcomed twin boys Brian Gerald Alexander and John Benedict Dimitri this morning. I don't have any other details, but first-time dad Ben is apparently over the moon:

"Both boys are healthy and beautiful,” said Mulroney. “Jessica is radiant and in great health and sprits. I am the happiest man alive."

ETalk Daily is, of course, milking this for all its worth (I was about to make a breast milk joke here, but I'm thinking it might be crossing a line...) so they'll have all of the details tonight, and also "fatherly advice" from celebrity dads such as Tom Cruise and Peter Facinelli.

So... yeah... more Mulroney DNA in the world.... yeah... and two boys... that's a lot of future hair products...

Mr. Rogers is EVIL???

I must thank Roger Ebert (whose Tweets I enjoy mightily @ebertchicago ) for pointing this out to me. It's apparently an oldie, but still amusingly asinine, clip from good ol' Fox News.

Yes, it's Mr. Rogers' fault that the current generation has a sense of entitlement. God forbid anyone think that they're special just because of who they are. Just wait until you see the response from "Nancy" in Tallahassee. Apparently it's not just Mr. Rogers who ruined children's lives!