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Wednesday, March 31, 2010

World Autism Awareness Day

Well, I missed Epilepsy Awareness Day... it was March 29. I usually had Facebook remind me of such things. *sigh* Well, to make up for it, I want to remind everyone that April 2 is World Autism Awareness Day (WAAD). You can read the press release here.

Also attached to the original email I received, there was a part coming from the Canadian Senate regarding Bill C-504, for the establishment of a National Autism Strategy. I've copied the text below for your perusal.


World Autism Awareness Day
Monday, March 29, 2010
SENATORS' STATEMENTS
Hon. Jim Munson: Honourable senators, April 2 is World Autism Awareness Day, a day recognized by 192 members of the United Nations. First, I invite you to join us tomorrow in the Commonwealth Room, room 238-S in Centre Block, and meet people working on behalf of autistic people, a group called the Canadian Autism Spectrum Disorders Alliance. By bringing these leaders together with parliamentarians, we want to raise awareness and create links between decision-makers and the people working hard every day on behalf of people with autism.
Later this week, I will move and speak on second reading of Bill S-211, an Act respecting World Autism Awareness Day. This bill has twice been given support by the Senate, in particular the warm support of Senator Keon and Senator Oliver, but has not become law yet because of two prorogations.
 The bill includes in its preamble two short points. First, it states that Canada has no national strategy  or autism and, second, it reminds us that Canada is a signatory of the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities.
These elements of the bill are important to the stakeholders honourable senators will meet tomorrow. These elements are fundamental to improving the lives of people with autism in this country.
Without a national strategy, efforts to address this disorder will remain ad hoc and disparate. Without recognizing the rights of people with autism, we fail to show them respect.
As I have already said in this chamber, recognizing April 2 as World Autism Awareness Day will not cure autism. It will not guarantee treatments for the children who need them and who wait a long time for them. It will not provide financial assistance to the families who band together to pay for these treatments themselves.
However, by making Bill S-211 law, we express compassion, care and respect. We say to people with autism that we will take action and we want to include them. This action shows what Canadian values are. House of Commons
Tuesday, March 30, 2010
Routine Proceedings
National Strategy for Autism Spectrum Disorder Act
Mr. Glenn Thibeault (Sudbury, NDP) moved for leave to introduce Bill C-504, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorder.
He said: Mr. Speaker, I would like to thank the House for giving consent to move this bill forward.
I am pleased to rise in the House to introduce a bill that would provide relief to thousands of Canadians across the country who have loved ones living with autism.
If passed, Bill C-504, An Act respecting the establishment of a National Strategy for Autism Spectrum Disorder, would establish national standards for the treatment and delivery of autism-related services, study the possibility of transferring federal funds to assist provincial governments in providing treatments, establish a medical surveillance program monitored by the Public Health Agency of Canada, and estimate the amount of funding required for health research into treatments and service delivery for autism.
If passed, this bill would bring relief to thousands of Canadian families who have loved ones living with autism.

An Awesome Article

Another IS parent, Ken,  has posted this link to a great, great article about Epilepsy. I encourage you to read it. The article starts about a 1/3 of the way down the first page. 

Tuesday, March 30, 2010

A Little Seizure Video THE SEQUEL

Clever title, eh? 

Another short video with Abby having a seizure, filmed yesterday at supper. And while we're on the topic of videos, you might want to go check out this one about radical brain surgery. It's yummy (and don't get queasy like I did when they show the big brain probe thingy). 


video

Puppet Gods





We did the "divide and conquer" thing again on Sunday: we got up late, I really wanted to go to 9 a.m. Mass,  and there was no way we'd all be ready in time. Besides, the kids were cranky and I didn't want to sit through the extra-long Palm Sunday Mass with them. So I went to 9 a.m., and Michael walks out the door as I walk in to make the 10:30 (generally calling questions and instructions to each other while one walks down the driveway).

 As we head into Holy Week, and coming up to the Triduum (my very favourite time of year), often the homilies are about the Death of Christ and the Redemption of Sin, for obvious reasons. Sunday's homily was no exception. 

Father talked about the Triumphant Entry into Jerusalem, but how they turned on Him demanding His crucifixion only a few days later. What changed? I've heard this explanation before, that they were expecting their Messiah to deliver them from their enemies, the Romans. When it became clear that it was not the case, well... I'm sure you know how this story ends. 

But something Father said has stuck with me, and I admit has troubled me. He said that people often treat God like their own personal puppet God (his words, not mine), expecting them to deliver them from their problems. In fact, Christ came to deliver us from our sin.






At first, I nodded my head. It made sense. I mean, I understood it with my brain. We can't rely on God to fix our own  personal problems: He has equipped us to do that more or less ourselves. I have know people over the course of my life that have sat back and expected God to fix their lives, and then blamed Him when nothing happened.


And I mean, there is nothing saying we can't pray for wisdom as to how to solve our problems, on making the right choices, or praying that we receive a little divine testicular fortitude courage to do the right thing.


Absolutely. I wholly agree with this homily. God doesn't fix our problems, He fixed our sin.  Case closed.


But then my heart whispered: What about your children? 


And so I said to my heart: What was that? Speak up, please.


And then my heart reminded me of all the times I spent on my knees, praying for Abby to be healed. Knowing that it probably wouldn't happen, but also believing that miracles can and do happen. I remembered my anguished cry when I started bleeding in my first trimester with Rachael: "Please God, let me at least meet my child." How many breathless prayers have I whispered for my children, my spouse, my parents, my friends and my community?


Sometimes God does fix our problems. We usually call them miracles. Pretty sure that's the definition of a miracle. Or at least, we'll call it Divine Intervention and consider the matter settled.  Either way, I don't expect Him to just... poof... fix something, especially if it's a mess I have skillfully created myself.  But I don't think that asking Him to fix my "problem" is in itself... well, a problem.


Is it?

Saturday, March 27, 2010

A Little Seizure Video

Many people have asked what Abby's seizures now look like. We've been trying to video-capture one, unsuccessfully I might add, for months now to show the neurologist. We finally captured one today!

The lighting is not great, so you can't see her eyes darting around. For those of you who know the "real-life Abby", you know it's not like her to sit still for so long!

We haven't seen a difference yet with the increase of nitrazepam (I've refused to consent to more VPA increases as we've seen pretty much bupkis for results thus far). I'm hoping for a med change sometime in the very near future.

Anyway, grab some popcorn and enjoy (and please just ignore the fact that I almost drop the camera about half way through the video)!


video

Friday, March 26, 2010

A Journey Of A Thousand Pieces of Toast Begins With A Single Crumb


First of all, a big pat on the back to my friend Jen who has put her daughter on a CF diet. You can read about her reasons and the beginning of her journey here and here. I was quite amazed at the difference in her when I saw them a couple of days ago... even after she accidently had some milk the day before at the breakfast table!

Our journey into GFCFSF-land has been progressing. What's GFCFSF? Gluten-Free, Casein-Free and Soy-Free. Abby has been CF since forever, and happily drank soy milk as a substitute. We've dabbled in the GF, and are finally feeling confident and certain enough about ourselves to fully do it for her. I've elected to go SF too because of the growing controversy about the safety of soy consumption. There's also a growing body of documentation that suggests that the similarity between the gluten protein, the casein protein and the soy protein causes cross-reactivity in sensitive people.

Some really good articles about the implementation of the GFCF (and SF) diet can be found here and here.

I suspect Abby is one of these aforementioned gluten-casein-soy people: we already have trialed (and challenged) the casein part of the diet, and we do see a difference in her ability to sit, concentrate and focus. We also know that she is sensitive to the gluten protein, as she has demonstrated that she can't eat wheat pasta, and hasn't had any for a long time (she wakes up screaming with a stomach ache in the middle of the night when she has durum wheat, which is a high-protein variety of wheat).

She loves anything dairy and pastas and bread. The dairy we were using soy-based products, but have recently switched her to Vance's DariFree, which I can't say enough good things about (DariFree is available in Canada through Medallion Milk). We've moved her to rice pasta, and she enjoys it and does well with it. Bread is another matter.

Who knew children with Autism are creatures of habit? She eats two slices of toast at 10:30 a.m. for snack. Every. Single. Day. And you know what? GF toast is... different... from "regular" toast.

We're not a fan of it, yet. We'll work on that.

Thursday, March 18, 2010

When Both Ends Are the Short End of the Stick


There was a time, in a galaxy far, far away, when I felt like I was hovering over Rachael waiting for something to go wrong (Jen, I think the term is "Helicopter Mother", LOL). I think it's a side effect of having a neurologically abnormal child as your firstborn: you expect the next one to be the same.

At some point, however, I decided that Rachael was A-okay, and quit worrying. I think it was around the time she turned a year old. And seriously, I worry about nothing with her, and figure everything these days is just "normal".

Fast forward to now...

The kids have been sick for 3 or 4 weeks. And I mean sick. And not good sick, I mean sick-sick, fully-sick, like that rapper guy...

http://www.youtube.com/watch?v=sxQwJ_bJUXA

(I'll let you link to the video, it has some... what I don't consider totally appropriate family viewing content, but it's quite, quite entertaining)

(but I digress...)

Abby has napped virtually every day the past three weeks (she gave up naps over a year ago), has been miserable, runny nose, fevers, the whole shbang. After a week or two of that, I finally took her to the walk-in clinic, figuring she had a sinus infection again (she's had two others already this winter). The doctor agreed and prescribed antibiotics. They haven't helped.

Rachael has completed not one but two courses of increasingly stronger antibiotics trying to clear an ear infection. Plus the cough, the restlessness, the cough, the runny nose.

Finally I threw in the towel and made an appointment with Dr. E, the pediatrician. He gave both girls a good look-over, hemmed and hawed, wrote some stuff down, and said, "Okay, now we talk."

My experience has been this can't be good.

Abby has a cold (duh), but most likely also has the flu and/or RSV, and just needs time. I can live with that, and suspected as much. She's sick-sick, but will get better all on her own.

Rachael, on the other hand....

*sigh*

Her ear infection is still not gone, and needs another 2-3 weeks of antibiotics to try and clear it up. Yuck.

She probably has RSV too. Double yuck.

"Oh, and I'm writing her a script for an inhaler, because I think she has asthma."

Whaaaaa????

Then, a little light went on....

That's what that wheezing (which I decided was nothing to worry about when Rachael magically became "normal" to me at a year old) has been all about!

For months!

Boy, do I feel like a crappy mom!