Just Keep Swimming

I remember the colour of the pool that day when I watched you stand in the shallow end, fall forward, kick your legs and swing your arms as you swam through the cobalt blue water toward the ladder in the deep end. The sun glinted off the ripples you made as your body moved awkwardly, but successfully to keep you afloat and move forward. The air tasted thick with heat. The green backdrop of our yard and the surrounding trees that hugged our pool area in a protective, supportive way was fuzzy because my eyes were hyper-focused on you. 

This was the moment we’d all been waiting for. You’d been working so hard and your bravery and determination would now shine through. Your giggling laugh risked the possibility of you taking on water as you swam beside your brother whose encouraging shouts kept you moving. And when you finally reached the ladder how many times did you climb up and return to the shallow end splashing back in with an abandonment that sent water all over the slate grey deck? Once, twice, and on and on to the fifth and sixth ‘lap’ from shallow to deep waters. 

There was no stopping you now that you knew you could do it. You were a big guy now, just like your brother. The deep end was yours and you had conquered it. And that’s what is so beautiful about you. It takes you longer to learn things and to summon up your courage to try things, but once you’ve got them, you’ve got them! And you do learn. You do accomplish. You do conquer. It’s just all on your own time, and in your own way. When given the opportunity you never fail to amaze us. 

Oh, how you love the water. It frees you and allows you to be in your own world doing your own thing. Presume competence because competent you are. Look at you go!

(click here to see the video or click below)

(video taken Aug. 3, 2014)

He's So Well Behaved...Can I Take Your Dog Home With Me?

You'd be surprised at the comments you hear when you're out in public with a service dog. Take a look at this funny video to hear some of the things people have said to this service dog handler:

I wrote the following post for the Waterloo Region Family Network blog in November of 2010 to raise awareness about service dogs and how they can help children with developmental disabilities. I thought I'd run it again here to explain the role that our service dog, Bentley plays in Carter's life. 

Boys Best Friend

Bentley is a seventeen month old yellow lab who came to live with our family a week ago. He will be my son Carter’s service dog. I have been walking Bentley regularly to become more comfortable handling him so that he and I can work together to help my son.

It’s true what they say about babies and puppies; if you're accompanied by either one, you're sure to get a lot of attention. When walking through my neighbourhood I've had others who are out walking pepper me with questions about Bentley: How old is he? When did you get him? The usual kinds of things. And then there's the inevitable comment about what a well behaved dog he is. When I mention that Bentley is a fully trained service dog I get blank stares in response.

I'm guessing that most people are familiar with guide dogs that aid people with visual impairments, but beyond that they haven't been exposed to service dogs that provide help to children with developmental disabilities.

Take a look at the list of ways a service dog can benefit a child with a developmental disability or autism (from the Autism Dog Services website):

• Improve safety and security at home, in public, and at school.
• Help prevent a child from bolting into traffic or other dangerous situations.
• Provide independence, allowing the child to walk holding their dog rather than a parent’s hand.
• Lend support and a calming influence to the child as they cope in highly stressful situations and changes in routine.
• Allow greater freedom for families to participate in outings and activities.
• Help with transitioning and behaviour when out in public.
• Help improve socialization skills by bridging the gap between children with developmental disabilities and society.
• Act as a constant companion, offering unconditional love and friendship.

For Carter, one of the greatest benefits a service dog can provide is an increased level of independence. With practise, Carter will eventually hold on to the handle on Bentley's jacket rather than the hand of an adult when out in public. Carter is easily distracted by all that is going on around him during outings and it can be quite a challenge keeping him focused and moving forward. Bentley will act as his anchor as they walk along together.

Carter is non-verbal and interacts and communicates in a unique way. When in public, if people see that he is with a service dog, my hope is that he will receive acceptance instead of questioning stares. Hopefully Bentley will draw people to Carter in a positive way and maybe even create opportunities for him to meet some new friends.

Carter’s siblings are often invited to birthday parties and play dates. Unfortunately, social outings like these are few and far between for Carter. Although having a dog is not the same as being invited out with friends, Bentley will be a loyal companion who will love Carter unconditionally.

To learn more about service dogs check out these websites:

http://www.autismdogservices.ca/
http://www.nsd.on.ca/
http://www.copedogs.org/     

I Believe in My Son, Will You?

You're always gonna find

It was worth it

If you just believe

Suzie McNeil's lyrics from her song, Believe have been dancing through my head since Tuesday night. They are a reminder that although there have been plenty of times when I've felt uncertain about Carter's future, I've never stopped believing that he will someday communicate functionally.

On Tuesday night I gathered with a group of parents and professionals to take part in Holland Bloorview's screening of the movie, Certain Proof: A Question of Worth.

The movie is a feature documentary about three children living with significant communication and physical disabilities, who struggle against the public schools in an emotional battle to prove their worth.

*Take a look at the trailer:

After viewing the movie, I participated in a panel discussion and was given the opportunity to speak.

I introduced myself to the audience and shared that my 9 year old son, Carter uses a Vantage Lite speech device to communicate. I didn't speak of the challenges we've faced with the public school system. I didn't speak of the struggles we've had trying to find support for Carter with his device.

Instead I reflected on some things from the movie that truly resonated with me: the loss of parental dreams and the challenge of replacing those dreams, the concern that children who communicate differently are often ignored, and the importance of making sure those childrens' voices get heard. Carter, and others like him, should be given every opportunity to learn to communicate functionally and to practise their right to communicate.

Looking back on Tuesday night's discussion, I wish I'd spoken to the audience about my belief in Carter's abilities and about how important it is to believe in your child and not give up hope.

When one of the moms in the movie broke down crying after having taken her son, Josh to a speech clinic in North Carolina, my own tears pooled and threatened to flow. This mom believed with all her heart that her little boy had something to say and that he was capable of communicating and learning, but no one else believed it. She went to North Carolina in search of 'proof,' something that is so often required from kids with communication challenges, proof that Josh had something to offer.

The speech therapist confirmed that indeed her son was a bright little boy with communicative intent and the ability to learn. When given the right tools, a little guidance, some motivating activities and lots of time, her son, Josh 'proved' that his mom had been right all along, he really was 'in there.' She wasn't crazy after all.

When Josh engaged in activities with the speech therapist, I wanted to cheer. I felt like I was reliving those moments with Carter all over again - the doubts about his language progression, the wondering if there would ever be more to his communication than a few simple signs and gestures, it all came flooding back to me.

I get what it's like to have to 'prove' to others that your child has a lot to offer. I've experienced the feeling of being alone in the belief that there's a lot more going on in your child's head than he's able to demonstrate.

This movie illustrates the unfortunate truth, that kids with complex communication needs are held to a different standard than their typical peers. They continually have to prove themselves.

If only there were some way to relieve them of this burden of proof, to create greater acceptance and opportunity for them, to get others to believe in them like we, their parents do.

To those who doubt our kids, I leave you with this...

You will see things you'll never forget...if you just believe...

Our kids (and their parents) can move mountains with dreams!

Be sure to read Louise Kinross' blog post about Certain Proof on Bloom:

If You Don't Speak, You Don't Count, Families Find

*Those who subscribe to my blog by e-mail will have to click on the title to go directly into my blog to watch the movie trailer.