My little man will be undergoing surgery in a few days. Not major surgery- he just needs to have his feeding button upsized as the smaller button I had to put in in December keeps clogging every time I give him his meds.

I think about how fortunate we are that we have access to the IWK, the children's hospital for Atlantic Canada. Sure, its still over 4 hours for me to drive there. I'll be tense the whole way there. And, I'm nervous about signing the consent papers. And handing him over. I'll likely cry like I do every time I have to hand him over for surgery. I worry about complications from seizures, and I worry that he just doesn't understand what is going on, and it breaks my heart.

But, the IWK is an amazing place, and we are incredibly fortunate to have the hospital as a resource, and I know he is getting the best care he can there.

Still... I think about the children and adults who survived the earthquake in Haiti, or those in other parts of the world right now who are suffering. Those who don't have access to medicine. We're almost "spoiled" in a way here with our anesthesia and our painkillers, and our specialists & surgeons. All things that we take for granted, because we have always had access to them. My heart breaks for the little children and adults who don't have a hospital to go to, and medications to help them cope with the pain. I will be praying for them. 

Since the holiday season is here, I suppose I should finally make an announcement- my son has his own "bear" that is available at stores all across Canada. Pretty cool, eh?


My Cameron & his PC Children's Charity Bear, "Cameron"


Last year we applied for a grant through the PC Children's Charity. They are a charity to which families can apply for funding for things to make life easier for their medically complicated children. At the time, we desperately needed a wheelchair van for our son and we had no idea how we were going to fund one. The PC Children's Charity will grant up to $20,000 towards the child's needs- far greater than any other sort of funding one can apply for.

I'll never forget the day we got the call from our local grocery store's manager (at SaveEasy), who told us that we had been approved for the grant. I was crying, she was emotional... I was sobbing when I called my husband and mother. From there, our community was amazing and held a fundraiser to raise the rest of the money. It was such a beautiful experience. Couldn't get any better than that, right?

Well, several months later I was contacted by a rep from the charity who asked me if they could model their yearly bear after my son. The PC Children's Charity Bear is promoted around the holiday season, and is available in SuperStores, $1 or $2 is donated from the sale of every $10 bear back to the charity. Of course, we thought this was wonderful- what an honour to be chosen to represent the PC Children's Charity! The bear is adorable, and he has a tag attached with a little story about "Cameron" the bear and boy (who has Angelman Syndrome), and how the charity donated the funds so we could purchase a van to make his life and ours much easier. All of the kids at school think it is pretty neat that Cameron has his own bear, and so do I

So, if you live in Canada, pop into a Superstore or Loblaws or SaveEasy, and pick up a bear. The proceeds go to a great cause. You can read more about the charity HERE

THANK YOU PC CHILDREN'S CHARITY! (you saved my back!!!)

{For more info on our grant, and our community's help, please read HERE}

When I was a teenager, I wanted to be a physiotherapist. Now that I'm older and perhaps wiser, I ask myself why I had this aspiration. I certainly didn't have any direct experience with people with physical challenges. Seems like a bizarre career path for me to choose.

Later, when deciding what to do for university, I had the application papers in hand to apply to study for a nursing degree, or for a teaching degree. I wimped out on getting the vaccinations I needed to apply for nursing school, and I went the teaching route. 5 years later, I had a BA with majors in English and Psychology, and a Bachelor of Education. I was a teacher. And I planned on getting my masters in Special Education.

But there was apparently another PLAN for me...

Fast forward to 11 years later. I am a (non-practicing) teacher. But, I am also a physiotherapist, a nurse. I am a speech and occupational therapist, and a doctor who specializes in gastric issues and seizures. I am many, many things. I am the mother of a child with significant physical and intellectual disabilities.

Is it possible that something inside of me "knew" I was destined to be a physical therapist and nurse? I think perhaps this is the case.

Today, I am the mother of 3 beautiful children. Two daughters- ages 3 and 7, and a little boy, aged 9. I sometimes forget how old my son Cameron is, partly because is small for his age, and partly because he is developmentally so "young". I've embraced the important role I have as his mother, and in helping show society that there is nothing wrong with being different. Although others may see him as "flawed", we see him as a truly valuable human being who adds great depth to our lives.  

Having a son with special needs, has taught me much about myself. He inspires me both personally and professionally- he led me on a completely different career path that I had never imagined. Instead of going back to school and "officially" getting my master's degree in Special Education, I started my own business, with products I designed because of him.  Even though I don't formally teach, I am still able to educate others about his disorder, Angelman Syndrome, and to make connections with amazing people I would never had met had I not been his mother.

Yes, I admit that I would prefer to not have to deal with g-tubes, and seizures, and trying to figure out where to fit all his specialized equipment in our small home. And, I've already seen enough bodily fluids to last a lifetime. But I wouldn't have it any other way. I'm enjoying this career that life planned out for me...

Sometimes I'm amazed at the simple solutions that parents (or therapists, other educators) come up with. Something so easy, that I think "wow, why didn't I think of that???". But, when a mom I know- a fellow Angelman Syndrome parent- posted a tip today online, I was obviously not the only parent who hadn't thought of it. She received numerous comments from other parents who also thought it was a fantastic idea.

Josh's mom found that her son was having a hard time keeping his toy in an upright position when he played with it.

"All I did was glue the gumball machine to a cookie sheet that I bought at Goodwill for 25 cents. Josh is now able to play with it much more successfully! Before he would accidentally push it over, and the balls would all roll away from him. He is loving it! "

Check it out!

Credit to: JOSHSMAMA on youtube.

With all the commotion over the H1N1 virus lately, I had to make up my mind quickly on whether or not I was going to vaccinate my special needs son, and his sisters. Frankly, the decision scared me a bit. I've never been one to rush into things without being educated. However, it is hard to educate yourself when there is SO much information online- much of it not valid. And with so many people having such strong opinions, I felt very torn between the two opposing sides. I had never even gotten myself or any of my children the regular flu shot, so to rush into this vaccination made me uneasy.

My 9 year old has Angelman Syndrome (AS). Many children with AS have respiratory issues when they get sick with colds & flus, and my son is no exception.  With him, and his younger sisters (ages 7 and 3), a simple cold settles right into their chest and has led to hospitalizations. They've never been bad enough that I've feared they wouldn't pull through- they just needed some extra oxygen and a little more care, but nonetheless, it is a concern every time I hear that first sniffle, that one of the kids will need to go to the ER at 3am.
 
Through the online AS community, I've learned about several children with Angelman Syndrome losing their fight with the H1N1 virus.  Every time I read it, the fear sets in, and the sadness for their family. I weep, because I can't imagine a life without my son, and my heart aches for them.  It has confirmed to me that I made the right choice for our family. We were fortunate enough to get one of the first offering of vaccines in our area. We had to wait 3 hours at my son's school, but all 3 of my children and I got the vaccine. Unfortunately, they quickly ran out of vaccines.  (In the next few days to come, priority groups were assigned to make sure those who needed it the most, received it). Yes, we indeed were very fortunate.

I'm still a little unsure about the vaccine. But, my options were to get it, or not to get it. If I didn't get the vaccine for the kids- if I didn't heed the doctors' warnings- and something happened, I would never forgive myself. By getting the kids vaccinated, I can "blame" the medical community if there are any long term affects. I did my research- the children's hospital and neurology department recommended my son get it. And I've made peace with my decision...

I was approached by a representative from KnitRite recently, who asked if I'd like to try out their products. Of course, I willingly accepted, and eagerly awaited my samples. They sent me a few pairs of their SmartKnitKids Seamless Sensitivity Socks, claiming that the socks have proven to be beneficial to those in the special needs community.

The box arrived, and the test began...

FIRST IMPRESSION:
I must say, I was immediately impressed with what I saw, before even trying them out.  The packaging is fun, bright, and eye-catching. I thought the slogan on the socks is clever and well thought out ("No seams to bugya"- with the friendly bug on the packaging). I also had great communication with the rep from KnitRite, so that created a wonderful impression for me as well.

Seamless Sensitivity Socks from SmartKnitKids


TEST SUBJECTS:
My 9 yr old non-verbal son with special needs & sensory issues (wears AFOs).
My 7 yr old daughter

PROS:
I got my daughter to try the shorter socks, and my son to try the longer socks. Because my son can't speak to give me his opinion on the socks, I relied on my daughter's expert opinion on sock-wearing to give me her review. She really liked them, and found them to be comfortable. They really ARE seamless- I wish I had known about this product 2 years ago when my now 3 yr old would have complete meltdowns for an hour at a time over her sock seams.
The no-seams aspect is FANTASTIC for AFO wearers! Sometimes the seams in his other socks dig into my little guy's feet. These socks were so smooth and snug and easy to wear under AFOs.

I can see how the snugness on the socks would really appeal to kids like mine with sensory issues, or those with autism and other sensory disorders. (I want some for myself).  What I particularly like about the snug-ness is that the socks actually STAY UP under the AFOs.

Other perks: I'm forever losing socks. So, I really liked how the socks have the company name on them. It makes it so much easier to recognize them and match them up.

And, the company claims that due to the high-tech fibers, that the socks wick away moisture, and feet will not be stinky. Well, this is a huge issue for me, so I`ve done the smell test. Many, many times. Initially, when I take Cam's hot feet out of his AFOs and sneakers that he's had his feet in all day, they stink. Within a minute or two of airing out, the smell is gone. The other socks? Nope. So, if you have a foot odor issue, I'd definitely consider shopping with KnitRite.

CONSIDERATIONS:
It took me a moment to figure out the sizing chart and how it works (I think I'm just chart-challenged), but once I did, I understood it.
The only real con I can think of is that at full price, I likely wouldn't buy socks for my other 2 girls. I tend to lose socks, so I go as cheap as I can for them. But, for a specialty sock for my son, the price is reasonable, and I would definitely invest the money into buying socks for him- even the longer length ones for over his AFOs.

I definitely recommend checking out the SmartKnitKids Website.
You'll be glad you did!
****************

Where to find the AFO socks:
I had a hard time finding the info for the AFO socks on where to purchase, so I asked the helpful rep, who supplied this info:

Thereis a link below that sells the AFO socks online.  Right now, she onlyoffers white, but will be offering more colors soon.  Also, customerscan call therawear.com at 866-848-9327 to order.  They have all the colored AFO socks, but do not offer them online.  Smartknitbrace.com also has a practitioner locator for your readers to find a doctor in their area that sells them.

I wrote this originally 2 years ago for Remembrance Day, for another blog. The words remain true for any day of the year. I thought I would share it.
----------

I'd like to take a moment to thank those men and women who fought for us and our country. Like so many other Canadians, I honour you on this day. But, I also remember you every time I look at my children.

At night when I tuck my children in, I think about what a wonderful country I live in. I look at my son's sweet and innocent face- he is so lucky to live in a place where those with special needs are valued and their lives respected. I know elsewhere he might not have this, and my heart aches for other children who live differently.

And as I tuck in my daughters, and stroke their hair gently- I think about how lucky they are to live in a time and place where girls and women are given rights and freedoms and respect that they deserve.Again, I feel deeply saddened for little girls who have less, and am so thankful for my girls.

I love that my children are blissfully unaware (for now) of how lucky they are.

I am thankful every day for living in Canada. I will always remember the men and women who helped give us these rights and freedoms,especially when I look at those three precious, safe, happy faces.

Thank you

Ican't remember how I stumbled upon this. eBay perhaps? I think I waslooking for some type of 'jumper' device for the baby. I figured when Iwas downstairs working, it would keep her busy and in one spot, out oftrouble.

Merry Muscles

A few years ago, I told Santa my interest in this product, and he agreed with me thatit was something our youngest might like, so he brought it for her when she was still an infant. Now, in all honesty, I rarely get time to go down to myoffice to work (most of my work is done in my kitchen), so she reallyhadn't used her Merry Muscles as much as I would have liked. But, whenwe did get to use it, I was very pleased with it.

How does it work? You fasten the Merry Muscles to thedoorway (ours screwed in), where it hangs, and you put them in it tojump around (has very durable snaps).

How is this different than other jumping devices? Well, itwas designed by an occupational therapist for safe positioning. I likehow it hugs the body, which is a BONUS- it's safer because the child can't CLIMB out!Also, you can purchase a doorway attachment so you can move it fromdoorway to doorway. It is also washable, which is great. The price wasreasonable (I think I may have ordered mine new from a store on eBay,not from this particular website).

This company also makes and sells larger versions of these forindividuals with special needs. Of course, I checked into getting onemade for my son, but in his case the cost was a bit pricey, and unless Isell an organ I won't be getting one for him (yet!). I think with his otherexpensive equipment, I ran out of organs to sell. I think I'll see ifmy husband has any he can give up...

It is very cool. Definitely worth printing off the information and asking your therapist about it, and whether or not it would be right for your special child. May also be great for those who crave sensory input.

I was recently contacted by email by a company. In the email, they asked me if I would mind taking a look at a product that they offer, and perhaps do a review for my readers. They would send me a sample to try with my own son, and I could make an informed review.

Yes, I definitely would consider this. (I used to write product recommendations for my blog when I worked for the newspaper, and thoroughly enjoyed it). I would also consider this for anyone else who has a product or service or resource that is relevant to my readers. If  you're interested, feel free to send me a comment or contact me. The product/service/resource should be something that parents or educators that work with others with special needs would find useful. If you want to send a sample, you certainly may make arrangements to do so (but isn't necessary). Please note, if I don't like a product, I'm not going to write a recommendation (sorry, I can't lie!)

As for that aforementioned product, I hope they send it soon, because I'm very excited about it. I can see it being a very useful item for me, and me ordering more for my personal use.

Want to know what it is? Stay tune!
 

My girls, ages 3 and almost 7, are signed up for swimming lessons at our local pool. (Well, the 3 year old was until we took her out of lessons- she's too teeny and shivers with cold the entire time). I pack them up every day, and head to the pool that is in our community and I watch my oldest daughter swim. I take Cameron with me, who looks on quietly and contently from his wheelchair. I always feel badly though, because he LOVES the water (one of the characteristics of Angelman Syndrome) and he can't do the lessons. And, even though we have a pool so close that would give him the opportunity to do something (because he is so limited in skills), I can't take them all myself to the public swims because I have TWO non-swimmers, and it isn't physically possible for me. I can't handle the 3 year old when my hands are on him all the time. The odd time I can find another adult to come with us and manage her, we get to all go.

(No we don't have any type of special swimming program here, the town is too small).

I like to reminisce about when I DID take him for swimming lessons, many years ago. And I was just telling someone about it the same day that something else happened, which makes it kind of funny. 5 years ago, I signed Cameron and his sister up for the Mom & tot swimming, where the mother gets in the water with the baby, and they do a play-based lesson. I made arrangements for this beforehand. I took my daughter in, and they offered me an extra instructor to take my son. Well, my son ROARED with laughter in the water, and my daughter screamed because she didn't like the water. People were surprised that the children were siblings from their different reactions. (Guess I volunteered to take the wrong kid in!). Cameron loved those lessons, and I was always grateful that the instructor took him in so he had the opportunity to go.

Fast forward 5 years.

On Friday it was our 10th wedding anniversary. I took the kids to the pool at 5pm for the swimming lesson (where I told a friend the story about those lessons years ago), and then came home and got ready to go out for dinner. We didn't have a babysitter, so we took all 3 kids out to the restaurant to celebrate our anniversary. We got seated, and our waiter introduced himself, then said: "I know this might sound weird, but is your son's name by any chance C?????" (I forget what it was he guessed at- he didn't get it right, but it was close). Then he asked about the Hampton pool, where we live. HE was the instructor that had taken Cameron in for the swimming. He told us how much he enjoyed taking him in, and later told my husband that it was one of the highlights of his instruction days. The guy even remembered that Cameron liked deep pressure, not light touch. Wow...

The really interesting part was how Cameron responded to this young man. Usually Cameron couldn't care less about strangers. He will reach out to us, and give us smiles, but usually does this only with people he knows really, really well. He immediately gave big huge smiles to him, and reached his hand out to his on several occasions when he came to our table. And the young man interacted with him so well; it was really fun to see. I told him that it was unusual for Cam to respond to someone like that- to which he replied that he was very honored.

I wonder if he recognized him somehow- could that be possible? Did he remember what we were talking about? Or did he just sense that this was a very approachable person?

I'm not sure why he responded the way he did, but it was so refreshing to see. And I'm glad he felt honored, because he doesn't reach his hand out for just anyone to hold. But, he can't do it TOO much, or else mama might get jealous