Listen up!
This blog was chosen as one of the Top 30 Parenting Special Needs Blogs .  Which is an honour, because there are a lot of fantastic blogs out there. Now, I'll have to update it more often!

Did you know that I'm a freelance writer? yup. It's true...

Are you involved with a special needs or medical related publication or website?
If you're looking for a writer for your special needs or medical related topic (Autism, Angelman Syndrome, seizures or something else), I might be the writer for you!

Check out my freelance writing website for writing samples in my portfolio at ---> www.penofjen.com
And, of course, you can contact me at jenniferfiander@gmail.com

A few years ago, I had a great idea- I wanted my son to be able to go on his school skating trips and experience skating like everyone else. The problem? He is in a wheelchair. Traditional ice skates are not an option for him. However, it seems a shame- since we live in a small town with very little to do, but there IS an ice rink beside the school that they DO walk to- that he miss out on a recreational activity he would enjoy. And, there were several kids who went to school with him who had mobility issues or used wheelchairs, who were missing out.

So, my mission became to get our town a few sledges.

What is a sledge? Well, you already know from the post's title- a sled is a sled-type thing with blades. It's a compo sled/skate. They use them for disabled hockey. They use them for recreation. Someone who is capable can self-propel it, or someone who can not (like my little man) could be pushed from behind.

It was going to be my mission- to get one or more of these sleds. I was going to approach the town to see if I could get permission to store and use them at the rink, then had fabulous idea on how to get funding. With a lot of research, I found a small company in Canada who makes them and I wrote to the company. They responded that they were going away for a month to the World Cup.

Then I got stuck. I didn't proceed. I pulled up that email. Two and a half years has gone by since I wrote it, and that was NOT the first time I had thought of doing this project. Two school skating seasons have passed, and I feel guilty because there is no sledge. Well, I'm back onto my mission! Enough is enough! First step- I sent a message to therapists who oversea these children to make sure they have no objections. They're keen on looking at this, once I get more info.

Now I'm stuck again. I need to find some of these sledge manufacturers. Where are they? I keep weeding through Google seaches that talk about sledge hockey (which is painful, because hockey is NOT my thing). If the Google Search Gods lead you to this post, and you know manufacturers, or have any great information on the topic, please send me a comment!  I promise to think of you every time I take my son skating.

Upon my research, I found a Youtube video of someone in a wheelchair being pushed around on the ice by another person, "skating". We have done this with my son several times. So, it got me to thinking- is a sledge really necessary? Would it be "different" to be in the sledge? And, the therapist brought up the point about transfers- maybe its best to STAY in the wheelchair? (My little guy can't really assist with transfers).

Which is funny that I was thinking this, because someone responded to the video in a similar manner:
I think that person had a really interesting question. Is it "different", or is it the social aspect of being able to be there, with the other skaters.

So, I added my own question, which I really hope the video poster gets (although its an old video) and responds to:

I'm researching ice sledges, to try to get the town to approve a few for my son & other kids in our area, so they can go "skating" with their peers. I thought the question that (the previous person) asked was a good one- how is the enjoyment level IN the wheelchair, compared to had you been sitting down in a sledge?
We've taken my little guy (who is non-verbal, so he can't tell me about this sort of thing) out on the ice in his wheelchair. I'd love your perspective. Thanks!

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.