A few days ago when I was dropping my daughter off at dance class, I had the experience of meeting a young individual with special needs whom I had never met before. Being in a small town, this doesn’t happen very often. The young man was with a woman (who I had assumed was his mother, but later learned that she was a caregiver). He was a teenager. Very well behaved, a big boy. Needed some prompting and reminding. Spoke well, but it was apparent right away that he was developmentally delayed. Still, it made my heart happy to see him out and doing so well (he functioned far beyond where I expect my own son to ever function).

On his way past me, he made a quick move to grab my hand. His caregiver reminded him gently but sternly that he was not to touch people he didn’t know, and that he had to have permission first. Of course, his action didn’t offend me. I didn’t feel as if my personal space had been invaded, and it was just a simple hand grab. But, I knew the lesson that this woman was helping to teach him. She didn’t realize that I had a child myself with special needs. And most of the kids with my son's disorder (Angelman Syndrome) are themselves very affectionate and will approach and hug strangers, and get in their personal space. (My little guy doesn’t do this, as he isn’t mobile).

I always think in these situations about what the right reaction is, or what to say. There is a little girl at my son’s school who adores him, and who is prone to touching and hugging others. They spend a lot of their day together. I tried to respect how the school teaches the “no touching” rule, but at this point she knows me quite well, so do I refuse a hug from someone I see on a regular basis?

In the case of this young teenage man, he stopped trying to grab my hand when reminded by his caregiver. At that point, I extended my hand in what I felt was an “appropriate touch”, and said “Hi, my name is Jennifer. How are you?” and waited for him to take my hand, which he did. He introduced himself and I chatted with him and the woman for a few minutes before we parted ways. The exchange went very well. Although I wouldn’t have been offended had he hugged me (although he was a big boy, and had he not known his strength, he could have crushed me), I feel I made the right choice in trying to teach personal boundaries and space, and in helping to teach appropriate (& inappropriate) touch with a stranger.

How do you respond when put in these situations of a developmentally delayed child or adult hugging you or touching you, and personal space?

Wanted to share with you my new "baby", something I'm very proud of:

The Canadian Disability Resources Database

This resource stemmed from being asked many, many times for information on how to apply for specific funding, or how to go about doing something. I hope it will become a huge benefit to many, many families & therapists & doctors.  Please check it out- and submit your suggestions for the database through the easy to use submission form!
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Are you tired of not having the answers you need to live your life?
The Canadian Disability Resources Database is a practical & comprehensive database to assist you with managing your disability, or that of a loved one.

Our free database contains links to information on:

      .future planning
      .mobility equipment
      .travel & transportation
      .medical suppliers
      .modified clothing & living aids
      & more
all organized & relevant to the area you live in!

We invite users & suppliers to contact us to submit their information for our database. Please specify whether the service/product/resource is relevant to a specific province, or nationally.

www.canadian-disability-resources.ca

My guest post for IWK (children's hospital) blog.
 
Please leave a comment!

And, I earned my "badge", which I display proudly...

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!
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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.
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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