Tuesday, 31 October 2017

Halloween Throwback

We needed a little magic in our lives during the period of time when the picture below was taken, but no, this genie didn't appear by rubbing a lantern. Her name was Bea and she was one of Carter's nurses at McMaster Children's Hospital. She didn't grant us any wishes, but after a three week stay at McMaster what we'd been wishing for finally came true. We were able to take Carter home!

The pictures below were taken fourteen Halloweens ago! Carter was just eight weeks old. He was diagnosed with failure to thrive because he was having a lot of trouble coordinating his eating and his breathing and he just wasn't gaining weight. So, he was admitted to Mac where he got a heap of attention and some fancy shmancy tubes to help him breathe and eat. As a result, he finally gained weight!

You can read more about his early days here

Carter settled in for a nap just in time to head home. I couldn't have been happier.

Fourteen years later, here's 5'4", 100 lb Carter!

Sorry, no Halloween costume (he's not into that anymore). But, if you'd like to see some Halloween posts from days gone by, you can click here, here and here.

Happy Halloween!

Friday, 7 July 2017

Speak Up and Be Heard

I was browsing through some old material and came across this post that I wrote for WRFN's blog several years ago. 

I couldn't help but smile (in an ironic sort of way) as I read over the article. Carter graduated from grade 8 at the end of June. May and June were challenging months as we struggled with the school board to resolve issues around where Carter would attend school next year. I advocated strongly to ensure that Carter receive the best possible school placement in order that his needs be meet. In the end, we are very pleased with the result.

The information that I wrote oh so long ago still remains relevant (sigh - some things never change). So, I'm posting it here again in hopes that others may find it helpful.

Speak Up and Be Heard

Over the past seven years (actually thirteen now!) I have attended a number of appointments and meetings related to my son’s therapy, education and medical needs. At times I've been outspoken. I’ve expressed my opinion and gotten questions answered. Other times, after the fact, I’ve kicked myself for not speaking up about my concerns or for not saying enough, wondering why I didn’t make the most of the situation when I had the chance.

It’s not always easy dealing with issues regarding our children with special needs. How do we find the confidence to speak up and be heard, especially when dealing with professionals who can sometimes be quite intimidating? How do we know what to push for and how hard to push? How do we keep all who are involved up to date about the goings on and the changes occurring with our kids? Unfortunately, there isn’t a one-size fits all formula for dealing with all the extra (and sometimes unexpected) issues that go along with raising a child with special needs. One thing is certain: we want to ensure that, as parents, we are doing everything we can to promote the best treatment for our children because they deserve no less than that. To do so is not easy. Like most things in life, experience can often be the best teacher.

Here are some things I’ve learned along the way. 

Parent groups are an excellent source of information and support. There are several groups within local communities across the province that are set-up to fulfill the need of parents who are seeking assistance when navigating the world of special needs. The family network that I volunteered for offered a parent mentor program. The program worked by matching a parent mentor volunteer with a parent(s) whose child had similar needs and who was seeking support. It can be empowering to speak with someone who has been down a path similar to the one you are on. If a parent mentor program is not offered in your area, look for a parent support group. You can usually obtain information about these types of resources through your local doctor's office or at your local children's development centre. 

It helps to be proactive. Boost your confidence by educating yourself as much as possible about what is going on with your child. Sorting through the vast amounts of information on the internet can be intimidating but you may discover helpful resources and information that you didn't know existed. Beware of Dr. Google though. There is a ton of information on the web and it can become overwhelming. Try to stick to the websites of reliable organizations. If you feel unsure about going on the internet to seek information, ask a friend or family member to fill this role. They can share with you the pertinent information they’ve found.

It can often be helpful to provide relevant information beforehand to doctors, therapists, teachers, camp counselors or anyone else who is working closely with your child. Providing information in advance shows that you are organized and prepared when it comes to your child. It also gives professionals a glimpse of who your child is and what they’re all about.

You should never be afraid to ask questions. Have you ever heard the saying, The only stupid question is the one that isn’t asked? If you don’t speak up, you may end up leaving a situation wishing that you had. Better to have asked something you feel might be perceived as ridiculous, than to continue to worry about something because you were afraid to ask.

You can be strong when you need to be. Even if it’s not in your nature to be outspoken and you feel you lack confidence when speaking with professionals, reminding yourself that this is about the needs and the best interests of your child can help you to overcome those feelings. It can be helpful to write down important points and any questions you have before a meeting or appointment.

In order to keep the lines of communication open, you will need to remain polite. Speak firmly and directly but remain tactful when stating your point or asking your questions. Polite yet assertive is a winning combination.

And finally:

You are the expert when it comes to your child. Your child deserves a voice and you need to be that voice because no one knows your child better than you do. So speak up!

Monday, 13 March 2017

Coming Home to Writing

Last Thursday was the final class for the Firefly Creative Writing workshop I participated in. It was called, Coming Home to Writing and it was like no other writing experience I've had before. I really enjoyed it.

The facilitators were amazing. Midway through the seven week session they even mailed out some awesome treats!

I've cut and paste some of the nuggets that I wrote during the workshop (below). I wanted to keep them somewhere other than in a dusty, old word file that will soon be lost or forgotten on my computer. 

Some of the writing starts with a prompt given to us by our facilitator, some of it is poetry built from our own writing or from a poem read to us during class, and some of the writing was prompted by looking at a picture.

These days I’ve been thinking about...

These days I've been thinking about writing. It got away from me for a while and I want to get back into it. I’m doing just that tonight with my fellow Fireflyers. 
I was going over some of my writing today and thinking about what holds me back in my writing. It’s the thought of having to have direction and purpose in my writing. The feeling that I have to become published, or recognized in order to be successful in writing. But my first few sessions here with Firefly have shown me that writing is very therapeutic and it’s okay if that turns out to be the purpose behind why I write. I believe that it may lead to more, but if that’s what it is for now, I am going to work very hard to accept that.


It doesn't have to be...                                           

It doesn’t have to be perfect. Whatever it is that you do, you need to accept that you are not perfect. You have flaws. You make mistakes. You are human. It doesn’t have to be the same as everyone else. Everyone’s situation is unique. Everyone does things in their own way. Everyone is different. Do what is right for you. It doesn’t have to be measurable. It can just be. It can happen without being rated or compared. It can just be.


Bear with me I want to tell you something about...

Bear with me I want to tell you something about life. It has a way of knocking you down, of blindsiding you, of taking your planned destination and putting up a roadblock. Just when you think you’ve got it all, you get sent in a totally different direction from where you thought you’d be going. You discover a road less travelled and on that road there are stops along the way that you never would have seen had you followed the planned route. You meet people you never would have met and you have experiences that change you and shape you and build you up.


This is what life does. It takes you by surprise.
It serves things up like an order of burger and fries.
Your order was, hold the onions, but when the burg arrives
It’s piping hot and looking good but the no onions just didn’t jive.


Now the ears of my ears are awake
When your footsteps they come in on the take
Every night you come calling
My sleep level falling
Now the ears of my ears are awake

Now the mouth of your mouth it lies still
Speech as we know it won’t fill
The halls like your feet do
Speech will evade you
Now the ears of my ears my heart breaks


Believe, Encourage.
He is different, not less.
Presume competence.

(Haiku about Carter)


When I see the words take my hand run away I think about running away from it all, from the struggles and monotony of everyday life, from the never ending demands and neediness of others.
If only for a moment.
To catch my breath with you again.
Take my hand and run away.
But if we ran, we would come back, wouldn’t we?


I see myself in this picture. My boy Bentley watching out for me. He’s got my back. He’s my sounding board. He’s my companion, my pup who pushes me to get out the door and get moving, to take care of myself so I can take care of everyone else in my family.
Bentley is the pup who loves unconditionally. He gives me so much, but what I love the most is that he gives my boy a best friend. When my other two are off on play dates or at birthday parties Bentley is the one who is here giving my boy what doesn’t come to him like it comes to my other two children.
Boy’s best friend indeed.


Where the singing resides is where I go to unwind. The dancing often follows. It is in this place that I let it all go. I stop the world around me and let the music take over. I sing like nobody’s listening and dance like nobody’s watching. Music becomes my escape, if only for a few brief moments of release. And then I get back to it all again, this time with a skip in my step, and humming a tune until it becomes time to unwind again.