max has a speech therapy angel watching over him.

A year ago today, the world lost Kim Pace, one of the most special people I have ever met. I think about her every day, and I miss her terribly. Every time I drop Max off at therapy I see her photo on the wall, and I wish she was still here. She would be so proud of Max's progress. I know in my heart that she is watching over him and that he has his very own speech therapy angel helping him along. Over the past few weeks we have seen an explosion of language and I can't help but think that he may be getting a little extra nudge from Kim. I can see her now, a twinkle in her eye and her contagious smile as I tell her that yesterday Max asked his first spontaneous and unprompted question. He picked up a water bottle and asked "Is it empty?"and then turned it over and watched the little bit of water left trickle out. As I got a towel to clean up the water I responded "It is now!".

Last week at gymnastics, when asked by a coach he had never met where he wanted his stamp, he responded "My knee" and when I pulled into our driveway that night he commented "Aaaaaand we're home". The funniest comment he has made was at my friend Shannon's house when he ran up to the pool gate and hollered "Come on! The gate is locked!". I also enjoyed his observation after I primed the walls of our previously red dining room, "Wow, it's white". Not only is he a smart little fella, he has a very funny sense of humour. Kim always told me how smart and funny Max was. She saw his magic and helped me understand that with a lot of hard work and a strong belief in my son, I could help Max knock autism on its ass - that it autism wasn't a death sentence. So Kim, thank you for watching over my boy. I'm sending you light and love and please know that you will never, ever, be forgotten.

2 year anniversary of max starting to talk.

This post is dedicated to Kim Pace

Two years ago tomorrow, Max started talking. Up until that point, I really wasn't 100% convinced it would happen. I hoped and prayed that I would one day hear my son say "Mama" in his sweet little voice. On August 20, 2009, he did just that. I remember calling Scott on my way home and putting the phone up to Max's face so that Scott could hear him talk. Scott told me later that he sat and cried tears of relief at his computer after hearing Max say "Dada". It was a big day.

So we celebrate. We celebrate this milestone because it is important to remember how far Max has come. It is so important to stay positive and truly rejoice in Max's progress. This video was shot this morning. Max doesn't like having his picture taken so he did his best to avoid looking at the camera. It's still mind blowing though. Max - you are a rock star! Kim, you promised me he would talk, and check out our little guy now!




August 2010: One year anniversary of Max talking
August 2009: Yay!! Max is talking!

ill communication: trying to put what i feel into word and rhymes.

Over the past few weeks, Max has been exhibiting some aggressive behaviour at daycare. Because I'm not there when it happens, I have no idea what is leading up to the behaviour, how it is being reinforced (as in, how are the kids and adults reacting and are they doing something to make him think that continuing this behaviour is going to get him what he wants). Insult to injury, he is laughing after he hits or pushes his classmates, which makes them think that he is enjoying hurting them. I dread picking him up at lunch time because I know that his teacher is going to give me the "he had a hard morning and did xyz thing" speech and make me feel like they hate Max and wish he wasn't there. Yesterday I was informed he pushed three children and incident reports had to be filled out and today he pushed a child down the stairs.

The challenge of course, is that he is trying to communicate something with this behaviour, and he is doing so unsuccessfully. Now it has turned into a game to him. The laughing? Well, that is yet another example of how someone with autism does not always exhibit an appropriate emotional response. I doubt that he is in fact happy. Or if he is, then that is because he hasn't yet learned how to care about being liked by his peers. It's very upsetting on many fronts. Last year Scott wrote a guest post about a time where Max laughed hysterically in response to Scott having an emotional breakdown. We understand on a very personal level that it is hard to know what to think when Max's response is so far out in left field.

Since Max's behaviour at daycare is clearly escalating, we have decided to send one of Max's IBI therapists into the daycare to see what's happening and to give the staff some help and support in figuring out how to react when Max behaves aggressively. The entire point of him being at daycare is for him to have more opportunities to socialize and clearly this isn't going to happen in the current state. Scott told me this morning that his "heart breaks at the thought of the other kids being scared of Max" and truthfully, mine does too. Max is a sweet kid. These behaviours only come out when he is frustrated because he is having problems communicating.

Max's CDA (Communications Disorders Assistant), Tara Dawson, wrote a beautiful poem for Kim Pace which she read at Kim's funeral yesterday. I think it describes perfectly the patience and understanding required when working with and raising a child with autism.

To Kim, with love from all of the “little lives” you’ve helped along the way.

I flap my hands,
Make funny sounds,
And don’t look in other’s eyes.
I don’t understand emotions,
Or the benefit to try.

“A real handful”,
Others think.
I’m never the teacher’s pet.
Not toilet trained,
With others my age.
My pants were often wet.

Yet you came into my life,
And changed what others see.
Called me, “good boy”,
And “smart boy”,
‘Cause you believed in me.

You taught me “help” and “toilet”,
Rather than “thank-you” and “please”.
You understood when my engine was high,
And all I needed was a squeeze.

You were sensitive with my parents.
It’s hard- this wasn’t their choice.
And you let me though all obstacles.
And helped me find…
My voice.

let go.

The past few days have been really hard. I'm sad that my friend Kim is gone. I'm sad that my friend Liz is gone. My get up and go has got up and went and I feel stuck, unable to move forward or backwards, unable to cry (which makes me feel guilty, like I'm a shitty griever to boot). Losing people suddenly and losing people when you knew it was coming are equally devastating. And I hate that losing them makes me anxious about losing anyone else. So here I am, raising an eyebrow as I look skywards and say "Okay, enough already with the stealing away the awesome ladies before their times, back off for a bit, will ya?" I need to let go. I'm not ready to let go.

celebrating kim pace.

My friend and mentor, Kim Kearns Pace, passed away on Saturday after a 3.5 year battle with cervical cancer. But I don't want to focus on her death, I want to focus on her life, which she kicked Absolute 100% Grade-A Canadian Ass at. I want to focus on her heart, which was bigger than the sun. I want to focus on the thousands of children and families she helped throughout her career as Canada's top Speech Language Pathologist. I want to focus on the positive energy she exuded and how she fought for what she believed in and inspired everyone who knew her.

I met Kim in the summer of 2008. We were still in the pre-autism diagnosis days and desperately searching for ways to help Max. She was the first person who reached out to me. She was the first person who listened when I talked about what was going on with Max. She came to the table with information and real solutions about what we could do for him. She was kind, empathetic, and frank about the challenges that lay ahead for us. Her honesty and candour were refreshing and I immediately felt less alone in this journey that we were only just beginning. Kim saw the magic in every child and unearthed gifts that you would never have known were there if not for her.

I credit Kim with getting us started on the right path for helping Max from a therapy perspective. Most of all I am grateful to her for teaching me about faith, and how important it is that I envision a positive future for Max. She believed in him and saw the twinkle in his eyes. She told me she expected tickets to his university graduation ceremony because she wanted to be there when he walked across the stage to receive his diploma. Whenever Max gave us a run for our money she told me that I would tell these stories at his wedding. On one particularly hard day she emailed me the following:

Look past it all - into the future .. several years maybe but there it is....do you see it? That beautiful, smiling, happy boy! That's MAX. That's MAX's voice! That's MAX talking! That's MAX playing with toys! That is MAX calling you "mama".

Visualize it - each and every day and that is what WILL be. Believe it with every ounce of strength you have and there will be no other alternative. I am living proof of this.

I could write for days about how wonderful Kim was and how sorely she will be missed, that there was still so much for her to do. Kim was a person so tenacious that when she was told she had less than a year to live due to cervical cancer, she decided to train for the 2010 Ironman Canada - a race that was more than two years away. And guess what? She did it (while continuing to work full time). While she was at it, she and her friends started The IronDames and raised over $110,000 for Wellspring, a cancer program that promotes physical activity.

Kim, I am devastated that I will no longer get to exchange hugs and smiles with you over Max's progress. I am blessed to have known you in this life, and I know we will meet again. Instead of thinking of you as gone, I am going to imagine you in heaven serving up your Romulan Ale and watching over all of the children and families whose lives you changed for the better.

Rest in peace Kim. You were one in million and you will not be forgotten.

Edited to add:

Visitation will be held on Wednesday July 27th from 5-9pm at:
Dodsworth & Brown Funeral Home
2241 New Street, Burlington ON

The funeral service will be held on Thursday July 28th at 10:30am at:
St. Christopher's Anglican Church
662 Guelph Line, Burlington ON

In lieu of flowers, contributions to the Halton Down Syndrome Association and/or blue balloon Health Services.