(Jillian practicing with “REAL” stairs)

Recently, I was able to attend a blog event, celebrating mom’s with Ronald McDonald House in downtown Toronto. I went on behalf of my friend Julie who blogs at Sober Julie. If you would like to check out my experience and maybe leave me some love, do so here!

I will also be posting at Bewildered Bug’s blog about a recent trip to the zoo on her behalf, it was so much fun! I’ll definitely update when I send her my final draft of the post. Look for it tonight, Serena!

Finally, I have to tell you a quick story. A month or so ago, an awesome blogging friend of mine, Tenille who blogs at Feisty, Frugal and Fabulous came into Toronto as part of the McDonald’s All Access Mom’s program. I offered to take her out for poutine and to meet in real life. Thankfully, she forgave me for the ridiculous walking tour I took her on with blisters on her feet. Totally not my fault I got over excited about what we were talking about and I forgot where we were going. Sorry again, Tenille, come back and I’ll make it up to you!

Tenille has done the most amazing thing. She is part of a new program that is being run by Walmart Canada. It’s the Mom of the Year campaign and it’s brand new to Walmart Canada this year. Tenille has done the unthinkable. She nominated little old me for the award. I’m beyond touched and honored, honestly. I feel like a tool by saying “It’s an honor just to be nominated” but seriously, it is. She’s one in a million that one.

From Walmart Canada:

About the Mom of the Year Award
This year Walmart is launching the Mom of the Year Award to help celebrate and recognize the huge contribution moms make as role models and integral members of the family and community.  This award will become an annual program to celebrate all that Mom does and shine a light on what is important to her.
Nominations will be accepted Mother’s Day (May 13) through July 8, 2012 and can be submitted through www.momoftheyear.ca. They can come from daughters, sons, family members, friends, colleagues or community members. Eight finalists will be selected and notified in mid-August and will be treated to an award celebration weekend in September. The Mom of the Year Award recipient will receive $10,000 for personal use and $100,000 to their cause or charity of choice. The remaining seven finalists will each receive $10,000 for personal use and $10,000 to their cause or charity of choice.

Feel free to head to Tenille’s post and read how wonderful she makes me sound. I’m so grateful to have such great friends.

So there’s this meme going around for a bit. Pictures of the ever hunky (and Canadian! woot!) Ryan Gosling saying “Hey Girl…” followed by some wickedly awesome phrase.  Sunday from Adventures in Extreme Parenthood began a regular meme for special needs bloggers to link up their ideas on what Ryan Gosling would say to us. And let me tell you, they’re all pretty hilarious. (I especially like Amanda’s from last week. Hi Amanda! Thanks for making me participate!) I bow to peer pressure and Amanda has been asking me for WEEKS to play along, so today, you’re welcome. You will see just how un-witty and un-awesome I am. Much like in real life. At least online I can get by on my children’s good looks and hilarity.

Dear Hands Free Mama,

I read your post about how to miss a childhood. Interesting, don’t you think? I have never read your blog before, but even the title of your blog is “Hands Free Mama” great thought… Urging mothers (in general) to put down their electronic devices (cell phones, laptops and the like) in order to spend time with their children. I find it kinda ironic that I came across your post when it went viral, so there must be a lot of us moms just sitting around eating bon bons around the interwebs.

Congratulations on a viral post! I know they’re somewhat hard to come by. The sentiment of the article is good, I mean, I love my children as much as the next person, but I shouldn’t be reminded to spend time with them. Have we become that judgy? I mean women are judgmental at the best of times and now you write a whole post about how much time we’re not spending with our children?

Plus… I’m not one to play tit for tat, but this article is post number 3942 for you. I haven’t checked your archives to see how long you’ve been blogging, but I’ve had my blog since ’07. I already know I’m not the greatest blogger in the world but I only have just under 700 posts since then. I feel that 3942 isn’t exactly hands free, is it? But really, I don’t know for sure. I don’t like to judge unless I’m actually in your shoes.

If you were to spend some time with me, you’d see that I DO have my phone with me often. My blogging usually happens quite late at night so I can spend time with my children AND my husband. If my children come to me and need/want me, they have me. They get my undivided attention. A huge reason my phone is with me? My youngest daughter has special needs, walks with a walker, is learning how to self propel a wheelchair oh and have I mentioned we don’t live near my friends and family? I share these things, via this amazing little hand held device called my iPhone. Not only do I capture HER and what she’s accomplishing, but her sister gets equal opportunity. Wouldn’t want to be accused of giving Lauren face to face time while I tape all of Jillian’s moves after all. Oh, I kid.

Really though, I just find it slightly funny that I came across your post via my little hand held device. Now if you’ll excuse me, I have some kids to ignore.

Our first bout of information came from Dr. Teesta Soman who is an assistant professor, pediatrics department of neurology with the Hospital of Sick Children. She happened to cover the most important question “What IS dystonia”? I was also lucky enough to find some familiar faces from Holland Bloorview and managed to learn a lot in a short period of time. Although Jillian doesn’t have dystonia, some of my friends have children with dystonia and some of the readers of this blog, their children have dystonia too.

Dystonia is a neurological movement disorder , in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.  The disorder may be hereditary or caused by other factors such as birth related or other physical  trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.  Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available.

Dr. Soman told us that there are primarily two major types of dystonia. Primarily- genetically inherited. It is being researched more, but it can even be pretty recessive. There are some people that recall their aunts acting in a similar manner before getting a diagnosis, somewhere in their family. Secondarily- Metabolic/Neurodegenerative. It was really interesting to hear about the 2 different types and what makes them different.

Next up was Dr. William Logan who is a senior staff neurologist at the Hospital for Sick Children. He is also affiliated with the University of Toronto, Holland Bloorview and Surrey Place.  He spoke about the differently medical management of dystonia. He explained his personal approach to treating dystonia as opposed to the science behind it. I thought  that was an interesting way to see it. Dr. Logan explained that dystonia is a symptom. In fact, I had been discussing this information forum with a friend of mine that was wondering what dystonia was. I took the time to bring light to the subject matter and explain that sometimes, dystonia is sometimes a buy one get one free symptom with CP. Just as ever case of cerebral palsy is different, dystonia is too.

Upon assessing the patient, you would need to find out what part of the body is involved. Determine the onset and natural history. Have there been any investigations completed (ie: MRI/genetic testing?) Past and present modulators and stressors? (Ie: what makes the dystonia better or worse? Typically, dystonia will get worse during times of crisis or stress and better while sleeping) Define which degree of disability. And identify co-morbidity.

Just like cerebral palsy, there are a vast amount of “treatment” that can be tried. Obviously, CP nor dystonia can be ‘cured’ so, they need to treat the symptoms. Following “typical” treatment for CP, dyskinetic treatments usually are: Physiotherapy, Occupational therapy, adaptive therapy, pain management, psychosocial evaluation, pharmacoptherapy. Often, there is a lot of trial and error to see what works best or what combination works well.

Let me know if you have any questions and I’ll try to find the answers for you. I’ll hopefully be putting up Part 2 tomorrow!

One of my favourite scenes. The trees and another hospital from the 5th floor boardroom.

Shortly after I joined the volunteer ranks at the hospital, I decided to become part of a committee to discuss how to move all outpatient charts to electronic format. I actually met Jillian’s doctor, Dr. Fehlings, 2 days before our first appointment. When I realized that she was on the committee, I immediately worried that she would peg me as one of those “know it all” moms. Thankfully, she didn’t. From that committee, it was decided that they needed a bigger committee that met more regularly and incorporating many people in different disciplines in the hospital. I asked if there was a parent on the team and the answer was no, so I volunteered for that too. So, every second Tuesday I sit on that committee. The larger group that I started out with meets once every 6 weeks. Also, taking into consideration my blogging, I offered to be a consultant of sorts for the social media sub-committee. Basically talking about all of the social networking sites.

Shortly before summer vacation started last year, I joined the family advisory committee. The committee is mad up of mostly families with a few staff sprinkled in for good measure. There are always great topics and great discussions. It’s nice to get out for the last Thursday of the month to attend a meeting with other like-minded people.

Just over the past few months, I have been speaking at the  new hire orientations. Basically, every person who is new to the hospital sit through a day of training to get familiar with the hospital protocols and such. My presentation is about 30 minutes long with a power point presentation behind me. The topic that I talk about is how to incorporate a family centred care approach and why it’s important to have the parent or patient collaborate with them.

When I typically introduce myself in these kind of situations, I like to lead with something a little light hearted and I introduce myself as “Just a mom”. Now that I keep adding things to my volunteer portfolio, my introduction has become a little long. I can safely identify myself as a family adviser, mentor and family as faculty.

Family as faculty sounds slightly complicated but it really isn’t. Basically my presentation at the new hire orientation is considered a faculty position. I also used to offer my personal email to parents who needed to talk. And get things off their chest. And thus, Parent Talk was born. Parent talk is an outpatient peer to peer “support” group (I hate that term!) and networking group. Typically when a child is diagnosed with special needs, the parents sometimes feel isolated and alone. This is just a way to meet other parents with special kids or to get some information about so many different subjects.

I really enjoy volunteering. I look forward to it even. I decided I couldn’t afford to give a large donation to the hospital, but I could give some of my time. Plus, it’s really nice to get a piece of me back since I lost some along the way when I stopped playing instruments seriously. It’s great to feel validated and included. It’s even better to hear afterwards what good ideas I had.

The weather has warmed and spring has arrived, meaning that May – and, with it, Mother’s Day – is just around the corner. For me, Mother’s Day is a delightful Sunday when I eat breakfast in bed, go to the beach or park with my family, and then enjoy a barbeque during the evening. It’s a laid-back and relaxing day, and it gives my husband and my son an opportunity to express their appreciation for my role in the family. For that I am always touched and honored.

So Mother’s Day certainly delivers as a holiday set aside to commemorate mom. But, in my mind, it doesn’t make me truly think about being a mother. It doesn’t remind me of this maternal role I have taken in life – and the path I’ve followed to get there. At least, it doesn’t do this on any level that differs from a normal day. But I do get such a reminder whenever a family birthday rolls around, especially if the birthday being celebrated is my son’s. To him a birthday is a chance to receive gifts and attention, an opportunity to celebrate the next age and next step upon which he plans to embark in life. To me, however, my son’s birthday party is more like a birth day commemoration – a time when I can think back on the planning, pain, and pride that took place in the days and weeks surrounding the moment he was born. It is a reminder of how much he’s changed but how special he has remained. It also encourages me to think of the bond that we will always share; even though the umbilical cord was cut on that day, that bond still remains. In fact, thanks to umbilical cord banking, the physical origins of our relationship may one day even prove beneficial to his heath.

So despite my son’s birthday being primarily about him, I can’t help but think about “us” whenever that time of the year comes. Mother’s Day is special, meaningful, and worthwhile, to be sure, but in my mind the ultimate mother’s day (this one spelled with a small “m”) will never be surpassed by the commemoration of the moment my child was born.

What do you think? Do you agree? Which Mother’s Day (or mother’s day) ultimately means the most to you?

(Photo Credit)

Our first assessment didn’t go well. Actually, that’s an understatement. It went horribly. Jillian had decided to get it in her head she didn’t want to be there, she didn’t want to participate and she certainly didn’t want a new chair. All while the OT and seating specialist talked specs for a new chair. The OT was surprised that Jillian had little to NO core tone. I said “She’s faking. She’s decided she doesn’t want to be here. Jillian, I have smarties in my purse, sit up for 5 minutes please” and she did. The OT chuckled to herself and said “I know it’s not right to laugh, but I have a 3.5 year old too. If she doesn’t want to do something, she just doesn’t do it”. There was another family waiting to trial the same chairs that Jillian was about to try,  so we opted to come back in a few weeks to get the process started.

Today was that day! We were a little bit late, but I tend to be late everywhere since I had children. I really do miss the pre-children punctual me. Ahhhh. Where did that girl go!? Anyway, back to the task at hand. Lately I have been asked A LOT how I felt about Jillian getting a wheelchair. I answered that I was a) excited and b) I need to learn how to run. Reason a) is mostly for independence. This whole “wheelchair” isn’t a new concept for me. When we first received her first chair, it looked like a stroller. Some of my friends said I should just call it a stroller, but I explained I needed to call a spade a spade and get used to saying “pediatric wheelchair”. Reason b)? Well, Lauren was never a wanderer, I have a very sneaking suspicion that Jillian will simply say “bye mom!” and take off. Note to self:  Must buy new running shoes.

Pardon me, I’m taking a trip down memory lane… Jillian, 18 months, first wheelchair, Kimba by Ottobach

We got to see 3 different wheelchairs: The Quickie II (most popular pediatric wheelchair), The Helio and the TiLite Aero Z

From left to right: Helio, Quickie 2, TiLite Aero, colours available for the body of the chair and hardware.

We started off with the Quickie II, it was a decent enough chair, looked pretty cumbersome and rather heavy, I didn’t try it out though. Sitting next to the Quickie was the Helio and we didn’t even pay much attention to that one. That one would have been pretty beneficial if I had a smaller trunk, it is more compact. Jillian did do pretty well with this one. Obviously we’ll have to work on her driving skills. Thank goodness she’s only using it for independence. I’m thanking my lucky stars it’s not a car.

In the end, we decided to try the TiLite Aero Z. The poor Helio was never given a second thought. Jillian immediately loved this chair. The frame is purple and she was just drawn to it. We did talk a lot about how light weight it is, transportable, etc. The OT even said that this particular chair is often used for sports and paraplegics like it a lot. I may or may not have snorted when she said “sports”. I don’t think anyone in this family is good with sports!

We get to try the chair for another 3 weeks. Then we’ll talk customization and specs. It’s looking quite exciting! Let’s just hope that Jillian won’t change her mind eleventy billion times about the colour before it comes in. There will be a few extra components that Jillian doesn’t actually need, but they’ll be mandatory for traveling on the bus to and from school next year. *Gulp…* the bus. Hold me, I’m skeered!