It's been a bit of a rough week filled with various different stressors but today was a great day. I covered a priority one high school science class (the only one I know of in our board) at school today and it went AMAZING! This is the first year our board has offered pure classes in certain subject areas for priority one students. It's not inclusion, but I'm thrilled that we are providing science curriculum to these students instead of just "life skills". These students are like sponges - they soak up information with enthusiasm and interest. It was so refreshing. We had a great, respectful discussion on symbiotic relationships in ecology. There was so much learning going on...super cool! 

To top it off, Kate had a great day too. She's becoming more effective with her head nodding and shaking her head no. It has opened up huge communication opportunities with everyone, not just us. Her world is expanding at an extremely fast rate and she's enjoying the ride! At story time tonight, we read a book called "That's not my snowman". At the end of the book, the reader finds their snowman because "his nose is so squashy". Kate put her hand on the snowman's nose and I said, yes that's the snowman's nose. She then reached up, grabbed my nose and laughed. I squealed with delight "yes that's Mommy's nose!" and then she repeated this FIVE TIMES - identifying the nose in the book and then my nose, even when I asked "where's Mommy's nose?". Kate demonstrated her knowledge. This is a HUGE deal and a very meaningful memory. 

I tucked her in, gave her a big hug and told her I loved her. She reached her arm out to me, so I told her how proud I am of her and that I love her so, so much. She nodded her head in response. A truly wonderful moment. We don't take anything for granted!

When I think back to our life of four years ago, I’m reminded of searing, striking pain we felt as we accepted Kate had some kind of special need. The 2010 Olympic Winter games will always remind me of the uncertainty and worry we lived through in February 2010. It’s weird, because we love Olympics and enjoyed watching them so much. We enjoyed watching our athletes truly “own the podium” in their own country in 2010 and honestly felt that athletic programming would be a good investment for our spare funds. Little did we know what was ahead in our own lives.

The VANOC games were even more memorable because Jamie, Kate, my mom and I all visited my youngest sister Ashley in October 2009 in BC. We got to see some of the Olympic sites come to life. It was really cool and meaningful. However, during our stay it became really apparent that Kate was suffering from something neurological – her sleep was a complete and utter disaster. I had never felt so tired and ill-equipped to function in my whole life. Something was seriously “wrong” with Kate, but I didn’t put the pieces of the puzzle together until we watched Alexandre Bilodeau win gold in February 2010. My mom, the kids and I were up at the cottage for a few days enjoying the snow and some time to watch Olympics. As I watched this amazing athlete embrace his brother, something clicked in my brain. I knew Kate was definitely facing a neurological disorder – and at that point, I figured it was Cerebral Palsy.

The stories in the media that followed Bilodeau’s victory shared his family life and many details about his brother Frederic. I was thirsty for information and craving an answer for my daughter’s delays. It was the Bilodeau family’s story that helped push me to find answers. After we returned from the cottage, I went back to our family doctor and insisted on a referral to a pediatrician. I really wanted a referral to a pediatric neurologist, but our GP ensured us that the pediatrician would make that referral if necessary. Within a month, we had started occupational therapy, physical therapy and seen a pediatrician. All because an athlete won gold and shared it with his brother. That’s a pretty powerful effect of Olympic gold.

Here we are four years later. We try to model the inclusive lifestyle the Bilodeau’s have established for Frederic. Our life can be difficult, but no where near as tragic as I anticipated in 2010. And now that the kids are old enough, we all love watching Olympics. I cried when Bilodeau repeated his gold medal. It signified something deeper to me, a triumph uniquely our own. How far we've come from scary, desperate times. At the end of this Olympics, we were watching the men’s gold medal match in curling as the kids were getting ready for school. Team Jacobs made an awesome move and the crowd on the TV cheered. Kate threw her arms up in the air, flapped them excitedly and vocalized a cheer, essentially copying what she heard on TV. Four years later, we are more than OK. We are awesome. 

This is a big post and may seem jumbled as I try to piece together bits of memory. I’m sorry. My biggest resolution for 2014 will be to make more posts on the blog so I don’t have to do a year in review (and scrapbook more of the kids’ pictures, even if it is an electronic scrapbook!).  

We had some big, monumental moments this year. Despite the gravity of Kate’s seizures, she has met so many milestones , most of which were totally unexpected. It was my greatest dream for Kate to walk independently. To see her walk so beautifully with such purpose and care has been surreal. We are so proud of her accomplished walking.

Kate took her first official steps on Nov 15, 2012. By Jan 21, 2013, Kate was walking more than 20 steps in a row. Her gait was wide and her arms flailed in the air above her, but it was amazing to witness. In February, we met with the special education consultant from the WRDSB who briefly tried to tell us about the congregated classes offered by the board. We clearly stated inclusion was our choice and he began the process to get Kate entered into her mainstream school. He also mentioned that Kate had one of the best gaits in an "Angelman child" he had ever seen, especially in a child so young. At this point, Kate was still walking holding our hands. We never expected her to get as good as she did. Once September 2013 came around, Kate was stronger, her gait got narrower and she needed less support. By school holiday break, Kate had become a completely independent walker. 

Kate was in a charity fashion show in early May. She got to wear a beautiful flower girl dress with a tiara on her head. Before the show, I knew I needed to get Kate some shoes that were fancy but would allow her to walk, so I took her to our favourite store – Baby Charlotte. As Kate walked into Baby Charlotte, the owner Carla was on the phone. Carla told the person on the other line "I gotta go...a miracle just walked in". So grateful for the love, support and encouragement from this local business. 
Here are a few shots from the Beautiful Me Fashion Show by Guys and Dolls Salon and Spa. 

In the middle of May we took the kids back to Florida because I had successfully bid on a week at an Interval International resort at the FAST Gala silent auction in Dec 2012. We spent Mother’s day (May 12, 2013) at the Orlando Science Centre for something different to do. There was an exhibit on Clifford the Big Red Dog with lots of opportunity for play and interaction for the kids. I think I cried the whole time we were in the exhibit. It was the first time Kate showed me that she wanted to play and explore like the other kids. I let her walk around, picking and making her own choices, sitting in pretend cars and crawling through tunnels. It was breath-taking. The very next day we took the kids to Universal Islands of Adventure because I love Harry Potter so much. Jenny and KP originally offered to take the kids back to the resort so that we could enjoy Hogwarts, but Aiden became very sick so the kids stayed with us. It was unbelievably amazing. We had a great time! Kate went on every ride she could, including Spiderman. Jamie and Kate played hard in Popeye’s boat and totally loved exploring Jurassic Park. They were both big fans of Harry Potter, enjoying Flight of the Hippogryff three times. These kids are fearless! We drank butterbeer and then finished our afternoon in Dr. Suess Landing. It was such an enjoyable day. I felt exhilarated, hopeful, and knew I was living the life I was meant to live. We enjoyed another amazing day on May 15th at Disney’s Animal Kingdom for Jamie’s 6th birthday. The kids were treated to a character buffet at Tusker Haus in Africa. Jamie and I finished the day off together at Magic Kingdom. We completed all of our favourite rides in 2 hours and even managed to see the new Fantasyland. One of my favourite memories from this evening with Jamie was watching him play with the $5 pirate sword he bought at the Pirates of the Caribbean ride. Right in front of the new Fantasyland, Jamie practised with his new sword. Parents and grandparents alike walked by and smiled at his cuteness. He was so into it. 

We had a fantastic summer, which included a road trip to Boston to meet Dr. Thibert. He is a paediatric neurologist who specializes in Angelman Syndrome. Dr. Thibert has been so amazing in his support of Kate and our family. He helped me choose a seizure medication back in 2012 for Kate and gave us great recommendations for help with sleep this year. We look forward to continuing this great relationship that will ensure our Kate is given every potential to be the best she can be. We also enjoyed an amazing summer at the cottage with lots of swimming and playing in the sand. So many great memories to last a lifetime. Click here to see some awesome photos from the summer! 

Kate started junior kindergarten at her local mainstream school in September. It gave me high anxiety to send my baby girl to school all day, every day, but she quickly found her niche in her classroom. After the first week of school, Kate used her PODD book to say “more to say: let’s go: places: elementary school”. We were foolish not to explain to her that we don’t go to school on weekends! The following week, Kate would march out of school at the end of the day, give me a hug, then try to get back into the building. It became very clear that she loved it. It brought me great peace to know how happy she was. I was slow to learn this but it became apparent to me that Kate was truly happy at school. One night at the end of September, after much stress and anxiety in our house on my part, my brilliant daughter delivered a beautiful message. At bedtime, she was fussy, so I crawled into bed to calm her. I told her I was so sorry that I stress about her growing up and going to school so much when I know how happy she is there. She listened and relaxed. She kept touching my shoulder and face to make sure I was still there. And then, for the first time in her life, this child with a sleep disorder snuggled up, got cozy, and fell asleep with her head on my shoulder. I've been waiting 4 years for her to relax enough to fall asleep like that! My fellow Angelman parents know how significant this is! It was wonderful. Our Kate is amazing and once again, taught her high-strung mother that she is OK. She is happy. She loves school. She's making unbelievable progress and it had only been 3 weeks. 

Kate settled in nicely at her school before a bout of seizures hit in November. In October, one of Kate’s teachers at school overhead this: 2 grade 4 boys were talking about the awesome park at Gibson Park...Kate's Place. The one student said to the other, "do you know that Kate goes to our school?! Kate is at our school! And that's her classroom!". A good friend and supporter of Kate's Kause, Gail Martin, wrote a lovely article in The Independent about Kate at school. 

Our good friend Mary-Louise Bertram visited us during the summer and again in October. She helps support us in PODD, literacy, writing, friendship, laughter and love. She is the epitome of friend. On October 14th, we were preparing to make an alternative pencil for Kate to have at school. Kate seemed interested in our easel but was unsure how to use it. Mary-Louise demonstrated that she could write and doodle with the markers. Jamie came over to see what we were doing and promptly took a marker and wrote on the easel. Once he was gone, Kate grabbed 2 markers in her hand and slammed them onto the easel. Jamie showed her how to do it by modelling. It was so powerful and quickly reminded me the importance of peer modelling: it’s so effective for Kate to learn from her typical, age-appropriate peers. 

To be honest, I'd been feeling kind of crappy for a most of the fall.  I'd been sick for 7 weeks; had pink eye and bad sinus infections. I was stressed at work; being 1/3 time is too hard. Our sleep was HORRIBLE because of Kate. And I really missed Mary-Louise Bertram once she was gone back to Australia. But in late October, as I dropped Kate off late at school after she slept in, I got a glimpse of Kate's JK journal. It looks just like everyone else's with a "picture" (Kate's scribble) at the top and some letters printed using her alternative pencil at the bottom. Holy smokes - it was beautiful!! I'm so proud of Kate's work and proud of her teacher and school team for really and truly "getting it". Included in the classroom AND participating in curriculum. Hot damn, that's awesome!

And so it is really hard to articulate the awesomeness I feel. With the help of wonderful family, a supportive community and an incredible big brother, Kate is living a life way beyond the constraints and difficulties of her diagnosis (I should really put diagnosis in air quotes - what does it really mean anyways?). She is doing things we were warned she wouldn't. There are so many things she's done over the holidays that I appreciate so, so much. Who would ever think that I'd appreciate the opportunity blow-dry Kate's crazy curly hair...a simple mother/daughter thing that I thought would escape us with an AS diagnosis...but today it happened. Life is full of surprises. Little things matter so much. These moments far out-weigh the struggles. She's my little girl - the one I always dreamed of. Merry Christmas to my two perfect children - you fill us with so much love.


A big thank you to our exceptional family and friends. You dream an amazing dream with us. We can feel your love and support. I won't name you here because I don't want to leave anyone off of this fantastic list but know this: you support, friendship and encouragement are rare. You are a person who truly knows what special means and you are loyal to us no matter what. We are so lucky to have your unwavering support and dedicated friendship. You make our lives easier. It takes a village. We are fortunate our village is so huge. 

Dear Kate,

I feel like I let you down a little bit today. I don’t often feel this way. Normally, I really feel like I do a great job advocating for you, taking care of you, and helping you achieve your potential. But today at your playground, the woman sitting on the accessible swing caught me off-guard. I was a bit shocked and speechless at what she said, which is weird for me…we all know that, but I should have addressed her comment. I should have followed your lead and called her on her ignorant and unnecessary comment.

Kate, I want to let you know that I learn something from you on a regular basis. Today you showed me that you truly are your own self-advocate. I know you were sad to leave the playground tonight, but I loved holding your hand as we walked out together. The woman sitting on the swing was loud and overbearing, but we didn’t really pay her any attention until she said “I feel so sorry for that little girl” as you walked by. I was so proud of you for instantly turning around to face her and make her look you in the eye. You made her really face the reality of her off-the-cuff comment. She was stunned at your honesty and confidence. You totally disarmed her while your mother stood by, baffled, and missed the opportunity to educate this woman. I promise that I won’t let that happen again. Perhaps we have been sheltered in our little community in Elmira. I know people look at you and think a lot of things, but I would have never imagined people would look at you and feel sorry for you.

So next time this happens to us, Kate, I am ready. This is what I will tell her.

Don’t feel sorry for my daughter. Kate is so well-loved, well cared for, and happy in her own skin, which makes her exceptionally rare and special. She loves her life and she loves her family. And she has achieved more and contributed more to our world in her 4 short years than most do in a lifetime. When you look at her, you should see a stunningly beautiful little girl with a contagious smile and a feisty personality. You should see that she is fiercely loyal and passionate about life. There is absolutely nothing to be sorry about. Kate is living life to the fullest.

Kate, there are a lot of people in this world who put others down to make themselves feel better. This will probably happen to us a lot. I’m not sure why…people could be jealous, unhappy, sad…whatever. None of that matters. We have each other and we have love.

Next time, Mommy will have your back. Thanks for teaching me how to handle these situations. I’m sorry I even shed a tear over this. I’m always a bit emotional at this time of year. It’s been 3 years since we lost Cooper and then a week later, visited the neurologist who performed the AS test. It’s still hard for me to face how difficult that was. This year, I don’t have something like building a playground <grin> to distract me from the pain. It still hurts a bit. Thank you for helping me through it. I love you more than life itself.

Mommy

We continue to model PODD on a daily basis with Kate. I'm getting really good at it and feel more confident every day. It's become so easy to think of things to say...it's now second nature as I've now learned to talk to Kate with her PODD. 

Two days ago, Kate was very upset during breakfast. I tried to figure out what was bothering her, figuring she wanted more food fast (hurry up: more: food). That didn't work, so I told her I think something's wrong in her PODD. As soon as I got to "something's wrong", she hit her palm on "grumpy". Without a doubt, she sure was grumpy!

Today I was cleaning dishes in the kitchen. Kate crawled up to me, pulled to stand and walked me to her PODD (a FIRST!).I modelled something to say. Kate selected "I'm telling a story" and then "It's a secret". I tried to find meaning to her efforts, so tried to imply that Daddy must have done something on the weekend while Mommy was working. However, I must have been incorrect because Kate crawled away. She went to the bathroom. When I caught up to her, she had peed in her pull-up. I put her on the potty with no success. A similar thing happened less than an hour later. Kate led me to the bathroom but had an accident while she was in there. This is the first sign she's made at attempting to communicate bathroom needs. We are making progress! 

Today I tried acupuncture for the first time because I'm getting terrible headaches. The chiro asked me to identify the greatest pain I ever felt. I thought she might think I was crazy (yes crazy, are you surprised?!?) if I told her the greatest pain I ever felt was my heart breaking during the spring/summer of 2010 while we tired to figure out the root of Kate's delays and accept her eventual diagnosis. Watching our recent videos of Kate walking reassures me that I'm probably wrong about that. 

We are definitely on a "high" right now. Life is good. Our kids are more amazing than we ever dreamed possible. And Kate is a walking machine! We've waited 3 long years for this moment and watched countless younger children achieve developmental milestones before Kate. As a parent, this is hard to do. Right now, we will bask in the glory of this achievement for a long time. Please forgive us if we seem over exuberant!  It's our time to brag and we are overly proud!   ;-) 

Update on our PODD efforts: 


All in one day, Kate told me she wanted to do what the others are doing, she wanted something "new" (there was a box of Honeycombs on the counter...we've never had those in our house!), and yummy!  


The other night when we were at Grandma and Grandpa's, Kate was the centre of attention. She walked around like there was no tomorrow and charmed the pants off of all her relatives. While she was busy walking and playing, I modelled conversation through Kate's PODD and chatted with the adults about my new-found understanding of assigning meaning to all of Kate's efforts of communication. Kate was busy playing with a train with her back to me, so I acknowledged that I was talking about her progress and our efforts. To make sure that Kate knew I wasn't talking about her without including her, I engaged her in the conversation. I didn't expect Kate to acknowledge me, but she did. She looked at me over her shoulder and smiled at me...a smile that said she knew what I was talking about. I'll never forget that look. 


And to top it all off, after a fantastic session with Christine our physiotherapist last Friday, I received this awesome email: 

Hi Kelly
I just wanted to let you know how moved I felt today watching you use the communication book with Kate.  It makes so much sense to me that she is absorbing the words and pictures and meaning without always looking at the pages.  I really think your hard work will pay off and I feel very excited for her that you are giving her this opportunity.  It is beautiful to me how much faith you and Jeremy have in her ability. She amazes me ..... and her walking today.... is just beautiful:) 
Enjoy your March break.
Christine

Sometimes, life is pure AWESOMENESS. 

Our first 4 days with intense PODD modelling!

I spent last weekend with some very influential and inspiring moms who are parents to children with Angelman Syndrome. We got to learn from Caroline Musselwhite, an amazing literacy and communication expert. I also spent some great one-on-one time with my Californian friend, Tina Thompson, who has effectively implemented PODD communication with her 5.5 year old son. Tina and her son are inspiring!

When I came back from my weekend away, one of the first things Kate did was say Mom-ma when we started conversing. She’s such a smart girl!

Tina reminded me that it is so important to assign meaning to Kate’s communication efforts, whether I’m right or not. They be in her PODD book, sounds, gestures (including arm flapping!), or movements (Kate leads us to what she wants, usually bath, because she is non-stopping walking with us). I’ve been so conscientious of this over the past 4 days and it has made a HUGE difference in Kate. Well, more accurately, it has made a HUGE difference in the connection I have with Kate, her success at telling us what’s going on from her perspective, and her overall happiness. She seems a lot less frustrated.

The first day I used the PODD, Kate had a bad night (up 3 hours) so she slept in. This gave me lots of one-on-one time with her. I took her PODD upstairs with me and we modelled dressing. Then we modelled time for breakfast. She ate well (big surprise) but was shout-crying at me by the end. I did: you have something to say (bracelet): more to say: something's wrong: and said you're feeling sad and upset. She slammed her hand down on TIRED, which she definitely is!! Intentional or not, I was able to assign meaning to her communication. I said oh Kate you're tired. She grinned and stopped shouting. cool, eh?

At preschool that day, we arrived when the teacher and Kate’s fellow students had the chairs arranged to form a bus to do the Wheels on the Bus song. I put Kate on a chair and proceeded to sing along with the teacher. She was engaged, smiling and looking at her classmates and teacher. After about 80% of the song was done, Kate reached for me and got really squiggly. She was DONE. I told her that I understand she’s telling me she’s done and wants to move around, but the song is not complete, so we will wait until it is done. She then reached for her resource aid (B) with 2 affirmative out-stretched arms. We laughed and I restated that B also understands that she is done, but we have to wait until the song is over. Kate then tried to wiggle right off of the chair. I then touched her leg and said it again. She made it to the end of the song…well, pretty much the end of the song!  ;-)

The next day, I took the PODD book out to a restaurant for lunch. Kate hit her hand on MORE.

The following day, Kate’s resource aid at school said Kate had the best morning. She was focused when B used her ALDs and completed a whole book as well.

The big thing here is that I have changed the way I am interacting with Kate. It’s like I forgot what I was supposed to do as we settled into our life with an AS diagnosis and the seizures and sleep disorder that came with it. Last weekend, I was reminded that young infants only have about 20 min of conversation directed AT THEM during a day…that young babies and toddlers learn language through MODELLING. They learn from what they’ve heard around them, not only from what was spoken at them. Kids pick up things in their periphery environment. I can make so much of Kate’s sounds, gestures, and movements. I honestly haven’t done a good enough job of this.

The other day, as I took Kate up to her room for a pseudo-nap, she noticed the snow falling outside. I picked her up to look at it and told her that I can still remember the exact moment when I know Kate first acknowledged the snow falling. She was 8 months old. We were outside, Kate was wearing the bear snowsuit, and it was February. As I shared the memory, Kate snuggled her knees into me (which she doesn’t do much anymore because she wants to walk so badly), put her arms around my neck, and put her head on my shoulder. It was a unique connection. 

Doors are opening for Kate and she’s ready to walk through them…literally! Kate is intentionally or unintentionally identifying something in her PODD every day. All that matters is that we assign meaning to her efforts and model. I have a great feeling about this! 

Yesterday Kate received a gift card to Mastermind Toys from some friends that reminded me I should tell this story.

I’ve mentioned that Kate’s communication is increasing. We’re seeing great evidence that her receptive language is awesome. On Family Day weekend, Kate, Jamie and I went shopping for a birthday gift for one of Jamie’s friends. We went to Hobby and Toy Central in Kitchener to pick out a stuffed animal. Kate walked me over to the stuffed animals and selected a blue dragon, very similar to the red one we bought Jamie in Oct 2011…the one Kate has loved and tried to make her own for over a year! She pulled this new blue dragon off of the shelf, got down to the ground and crawled away from me. She put it under her tummy and lay on top of it. In her big fluffy winter coat, I panicked and thought she must be seizing. Once I lifted the hood so I could see her face, I could easily see her huge smile. She was making a choice. She picked out her own toy!!! She giggled a sly giggle and I knew we weren’t leaving that store without that dragon. It was a super cool moment to witness. She’s developing and growing up!!

We are also working hard at modeling Kate’s PODD communication book. It’s easy to do at meal time. I’ve seen her identify “yummy” a couple of times. If it weren’t for all the learning I’m doing right now about communication and literacy, I would have assumed it was a coincidence. However, I now know to assume competence. It’s empowering.

Tonight we had Grandpa Mark over for dinner. Kate was working on her walking and chose to walk to him 3 times. It’s so cool to see her make decisions, to go to the person she wants to. She hung out in Grandpa’s arms afterwards, watching The Lorax music videos on her iPAD. I think it’s a bit ironic that Kate loves The Lorax movie so much. The quote on my rock from my parents at Kate’s Place is from The Lorax. She’s so smart…she’s made the connection! And really, how can one not like a movie that’s colourful, musical, and has an important environmental message! So smart! 

This week was a good week. I need to write about these moments so I can remember them later. At the beginning of the week, we had our first meeting about Kate attending her local neighbourhood school. It went WAY better than I ever imagined!

It is so cool to watch both of our kids excel in their own way. Swimming lessons is something that brings us so much joy. Kate is now in the preschool swimming lessons. She swims in her ring so she can have some independence and learn some new skills without Mom, Dad or Grandpa being there! This week showed large improvement. Kate wore the life jacket really well. She did some assisted jumping into the pool. AND she followed one step instructions and swam for a toy…all by herself! She did this over 5 times! Her teacher would throw the toy and ask Kate to swim to it. Kate swam in her ring toward the toy each time. It is so cool to see her succeed like this! Just awesome! It’s great proof that she’s so capable of learning. She’s really showing us that she understands what we are saying.

Meanwhile, Jamie is doing well in his lessons. He’s the smallest kid in his swim class, but that never stops him. He jumped off the swim block today. He also used a pole to get himself down to the bottom of the pool. It’s always a fun night, but this time it was extra special as both kids tried their best and exceeded their expectations.

At the end of the week, Kate and I spent the afternoon cruising the mall. She walked the entire way holding my hand, side by side, fom Old Navy to Bath and Body Works. We stopped at lots of windows. Kate loves the ones with loads of colour and lights! People would smile at her as they walked by because she can’t help but make people smile! If someone would walk by and not notice her, she would giggle and cackle at them until they would see her smiling up at them. I’ve never seen one kid make so many people happy. It was such a typical thing to do with your daughter. I thought I’d miss out on moments like these, but that’s not the case with Kate. She’s an awesome little shopper. I loved every moment.

Finally, Kate is working really hard at standing up on her own. She’s constantly popping into the bear crawl position. She’ll look at you upside down while doing her super flexible version of downward dog. Tonight she did it with only one hand as support and she figured out she needs to pull her body up to stand. So satisfying…there were those who said she couldn’t motor plan! As if! She’s a rock star.