Sunday, September 20, 2009

What's New?

New Glasses

Zoe's glasses were lost two weeks ago at school. Her teachers are always very responsible with her glasses and other equipment and felt terrible about them falling out of a side pocket of a bag when they were on their walk. I think they were more upset then we were! So we ordered new glasses and they came in on Friday. We were so happy to see Zoe in glasses again. What a difference it makes in her looking and focusing now. As soon as the new glasses were on, Zoe just kept looking and looking at everything. When we got home, we put her in the walker and Zoe just took off and kept laughing and smiling like she was saying, "Hey, I can see everything again!" We were looking at replacing the old glasses soon anyway since they were starting to press on her temples. And this time we got transition lenses so Zoe can see better outside. So far we are very happy and so is Zoe. She keeps signing "Zoe happy."

Zoe posing for the camera in her new glasses.

Zoe's New Big Girl Role

Now that Zoe is a big girl and goes to preschool, she is starting to have jobs around the house. Currently, it is Zoe's job to feed the fish, oversea daddy cleaning the fish tank, turn off the light in her room, and sometimes Zoe will help us with preparing dinner.

Zoe helping Daddy clean the fish tank.

Zoe helping make pizza.....

....sometimes throwing the cheese on the floor is more fun than putting it on the pizza!

Zoe's New Fish

Zoe adopted Brittany, the fish from school. After rearranging the classrooms this summer, Brittany no longer had a safe place to live. We were very excited to take her home. Zoe knows that Brittany is her fish and therefore, she has to take very good care of her. Gavin was just a little bit excited about having a second fish tank!

Zoe showing Brittany her rolling toy.

New Look for the Pony and New Walking Style

We used to use a basket on Zoe's pony with a toy in it as a way to motivate Zoe to walk. Lately, she became so interested in the toy that she would just stand there and play with it. So we have taken off the handle bars and basket so the pony is open in the front. Now, Zoe is able to get right up to tables, chairs, etc to reach things better. And she can see where she is going so she is not distracted from walking. We have noticed big changes in Zoe's walking style. She used to walk just for walking sake and just run around when in an open area. Which is typical of kids when they are first walking. Now, like an older child, Zoe will take off and run over to a toy or something she wants to play with but does not do a whole lot of walking for walking sake. She now expects to walk to get where she can play. We have set up different areas of the house for her to explore and play in. School has done a really great job with this as well.

The other way her walking style has changed is that her coordination has really come along. Zoe now gets a full gait going with opposite arm swinging at the same time her leg is moving forward. It is very exciting to see this development. Zoe can now back up and move away from things when she is stuck. Every now and then she gets really stuck and will squawk for help, but mostly she is very independent (and has to be watched or she will really take off!).

Zoe playing with her pom pom outside of her "bat girl" cave.

Zoe stopping to play with one of her favourite toys while walking around the living room.

And despite us putting up all sorts of fun sensory play stations and toys throughout the house, Zoe's favourite place to go is still the bathroom! Crazy girl! She now has the coordination to turn herself and go into the bathroom very easily and loves to just hang out in there signing "more." More what? More toilets? Who knows! You can see her signing more in this picture.

New Signs

School has been great about working on lots of new signs with Zoe. We are continuing to work on signs at home too. Zoe is working on her animals right now and names for objects in her classroom. I have been working on feeling words and Zoe is doing an amazing job communicating. Something I did not teach her but she has started doing herself is to add "mommy" or "daddy" to her feeling sign to let us know which one of us is making her angry or sad. And she will label our mood too by signing "daddy tired." She is also doing a great job of vocalizing to get our attention and then signing. We joke now because she has become so vocal that we feel like she just yells at us all day long! She is not always patient but it is so great to see how much she is able to communicate despite her being "non-verbal."

New School Schedule

Now that Zoe is in Preschool, we decided to increase her days at school to three days a week. Zoe now goes to school Monday, Thursday, and Friday. Three days in a row were too much for her, she would just be exhausted by Friday and not get much out of it. This way she has some time to rest in between but is never away from school more than two days. Zoe continues to LOVE school. This past Monday I woke Zoe up to get her ready for school. She kept repeatedly signing she was tired. The conversation went something like this:

Zoe signs: mommy

Mommy says: Yes, Zoe?


Yes, Zoe. I know you are tired but it is time to get up.


Yes, Zoe?


Yes, Zoe. I know you are tired but it is time to get up.


and it repeats itself until Zoe hears Gavin in the kitchen. She then applies to daddy for help.


Yes, Zoe. Daddy is in the kitchen.


Yes, I know you are tired.


Yes, Zoe. Daddy is right there.


Ok Zoe, I will tell Daddy you are tired.

Daddy- Zoe wants you to know that she is tired.

Daddy says: Ok Zoe, I know you are tired but it is time to get up.


and on it continues until I answer with

Zoe I know you are tired but it is time to get up for school.

suddenly Zoe's hand stops in midair from signing "tired" and grasps the other hand in a "school" sign while a big smile spreads on her face.


Yes, Zoe you are going to school. That is why I woke you up.

School (signed while laughing and smiling)

Gee Zoe, I thought you were tired.

Shakes her head no and then signs "Zoe school"

Well I am glad that you suddenly got so much energy for school.


Yes, Zoe you are going to school

Zoe School

(Sigh) Yes Zoe, you are going to school

Zoe School.....

and you can imagine this continues for some time!

New Physio Schedule

At this point, we are able to back off from doing so many physio exercises and able to let Zoe run around the house and play to get her exercise. For a long time, we had to teach Zoe to put her feet on the ground. Now, she loves to walk and stand. So we are working on building her endurance and this is best done by letting her walk as much as possible. We take her over to Variety Village (a great wheelchair accessible facility with big smooth hallways and a heated pool) and just let her wander the halls. It is also great to see how many people know her. Many have commented on her not having her glasses the last few weeks. It is nice to have this sense of building a community that is getting to know Zoe. Some people I don't even know but they will say, "Hi Zoe" so I guess they know her!

Zoe also loves being in her stander and will stay there for up to an hour as long as she has something to play with. She LOVES playing in the sandbox or water table at school.

We do still have to do some arm strengthening/ compressions to get Zoe to put her hands out. She continues to put her arms down at her sides rather than use her arms to push up or brace herself when falling from a seated position. Just like with her legs, we have to program Zoe's brain to do what other kids do instinctively. We also continue to stretch her hips and hamstrings which continue to be very tight.

As always, Zoe continues to be very motivated to grow and build muscle tone. She does a great job rolling her toy back and forth to build shoulder strength, pushing buttons to build fine motor, etc. She is even building the muscle tone on her right side without us needing to prompt her to use that arm and hand. This is different than showing a preference for one hand or the other since it is a weakness in one side rather than a preference in the other. We used to have to prompt her a lot to use that right side, but she is now doing it herself. It is so nice to be at a place where therapy is becoming more play based and less funky exercises that make her scream!

New Health Routine for Genevieve

I am continuing to have some health issues this year. In 2005 I had an endometrinoma removed from my left ovary. At the time of surgery, the doctor also removed several more endometrial growths from my pelvic cavity. Since surgery, I have done well maintaining my health by eating well, getting lots of sleep, and acupuncture. As you can imagine, finding time for these things has been challenging since Zoe was born.

My doctor gave me a stern warning lately and I have missed quite a bit of work so it has been a real wake up call. My symptoms are much worse lately and interfering with my life. So I have recommitted myself to taking better care of myself, building my own muscle tone (how else am I going to be able to lift Zoe in the next few years as she gains weight?!), and getting back to acupuncture. My symptoms are such to suggest I may need more surgery but I have decided to hold off on that option for the moment. Surgery is not a cure for endometriosis and can actually cause more growths on the scar tissue left behind. Unless I am in danger (like last time- the cyst got so big that if it erupted on its own I could have lost an ovary and gotten very septic) I am opting out of surgery for now. Acupuncture has proven to be very effective in treating symptoms. I just haven't been good about going on a regular basis. I also started a hormone last April to help with pain and I am happy to report that the pain is getting much much much better. In April, the pain had gotten so bad I could not lift Zoe but would drag her from room to room on a towel (she actually enjoyed this!).

I think it is a combination of not being in chronic pain and Zoe doing so well that I am feeling much better mood wise. I feel like a new mom in some ways. There are days when I know I should sleep in (like yesterday- Gavin was home and got up with Zoe but I heard then giggling so I HAD to get up and see what they were up to) but I just want to gaze at Zoe all day long. She is so beautiful and I just love watching her eyes light up as she cruises the house and discovers something she can play with. I love hearing her "yell" at us. I even love when she is mad at me because I say it is time for bed and she signs "mommy" and "angry" with a very angry looking face so I know that she is mad at me! She has such a great sense of humour and I miss her so much during the week when I am at work that is is hard to take any time for myself to sleep on weekends.

So for now I am committed to taking better care of myself (something women in general are not encouraged to do in our society or my family). And I am really enjoying watching my beautiful and wonderful daughter play with my gorgeous and wonderful husband. They both make me feel like I am the luckiest mom/wife in the world.

After posing for the first picture on this page, Zoe giggled and signed "all done" like she was saying, "Please, please no more photos right now..."

Then she got serious- "all done" aka "look, I mean it, no more photos right now!"

Thursday, September 17, 2009

The world we live in (sucks sometimes)

First off, Zoe is absolutely fine. Great actually. She just started three day a week preschool which she loves and is one busy little girl. I am going down early to pick her up and bring home Brittany, one of the school's goldfish (and her tank) that they no longer have room for. Zoe loves fish and wanted to adopt her (or at least she seems excited) so welcome to the family Brittany. We are all recovering relatively quickly from the cold we all had last week and Genevieve seems to be feeling a bit better after having a rough couple of weeks (knock on wood for those last two). So all is well.

This post is a copy of a letter I sent the CBC last Thursday. The CBC is Canada's national publically funded broadcaster and the show I refer to is a satirical news program (long past it's prime). It's not really a happy letter- not really a sad letter either. More resigned, I guess, and a reflection of the world we live in, and the perception society has of those that we all know deserve far better. It contains some terms I would never even think of using- not meant to offend but to illustrate my point. Here's the letter, anyway.

Hey "This Hour has 22 minutes" people,

I am not a fan of your show, though once I was. It has probably jumped the shark tank some time ago, despite the introduction of some peppy new comedic talents. Still, you are not as terrible as "The Air Farce"; you are certainly no Rick Mercer Report, however. Sorry, but there it is. I do thank you for bringing a nice little piece of irreverence and satire to the Canadian/world scene, no matter how frequently miss your mark.

This letter is not intended as a critique of your comedy, however. Today I sat down to dine on some nice leftovers and switched on your show at 3:53 PM. As I enjoyed my re heated meatballs a segment came on- the show was a rerun and I have no idea what the segment was on or when it was from. Something about IQ scores at the CBC. Whatever. However, in the course of the 92 seconds I watched you used the term "borderline retarded" at which point I clicked away. We don't have cable, so five channels later I found myself back again to hear "it's like getting a gold medal high jump at the Special Olympics" at which point I turned off the TV, sighed (I had finished my microwaved meatballs by this point) and came through to write this letter. And here is why.

The term "borderline retarded" is, except in very specific medical senses (and even then it is insensitive and non specific) an unacceptable phrase. As are Special Olympic jokes, when the aim is to denigrate the accomplishments of somebody. People with developmental disabilities (like my daughter Zoe) have to put up with these insults, and this discrimination, and this denigration of their worth as human beings every single day. Casual references and jokes, like yours, really do stigmatize and hurt. My daughter, only two and half, does not yet feel this hurt , but I do, and her older friends with developmental or intellectual disabilities do, and my cousin who has Downs syndrome does, and thousands and thousands of other Canadians and people around the world every single day do. Imagine for a moment you are an adult with a developmental disability, and you come home from your job or your day program or whatever and you’re sitting on the couch with your mom or your roommates and you flip on "This Hour has 22 Minutes". You think, "oh good, they are funny" and then BAM! Mark is calling you and your friends retarded. And then BAM! you look up to see your Special Olympics medal you are so proud of just as Gavin is taking a big fat dump on it on national TV and calling it worthless. Nice guys. Really classy. And people laugh. And laugh. And laugh.

And you shut off the TV and then what do you think?

And by the way, have you ever seen some of those Special Olympics athletes? They can kick my ass at High Jump or Shot Put, or just about anything athletic. Yours too, I'd be willing to bet.

So will I boycott your show? No, I don't really watch it anyway. Will I organize a letter writing campaign? No, though I will encourage my friends and family who I included on this e-mail to write to say "Yo, guys. Way to go. Thanks for picking on the weakest and most discriminated against group in our society, and contributing to their continued degradation by doing it so during prime TV watching hours, and showing it continually on re-runs, so people can see it again and again and again". I am far too busy for letter writing campaigns- organizing my daughters medical appointments, looking for ways to maximize her quality of life, doing her physiotherapy, taking her and her walker and her stander and her special needs stroller everywhere, fighting discrimination and fostering inclusion so maybe, maybe one day she won't have to put up with this shit . . . you get the idea.

If there is an air of weariness to this letter, it is because I have to fight this fight, for my daughter, every single day- I hear it on the subway, on TV, at work (and I work at Sick Kids, the largest Children's hospital in the nation). And do I ever expect to see "retard" go the same way as "nigger" or "pakky" or "kike" or “faggot” as it should? (I use those terms to demonstrate that retard is a word of the same ilk- filled with denigration, judgement, prejudice, discrimination and hate) No, not really, because shows like yours use it so casually so often it becomes a part of our language, so disconnected from any meaning but still spreading hate and pain to those that, really, deserve far better. What do I expect the outcome to be from this letter? Realistically, maybe a polite letter from a junior assistant on CBC comedy staff saying "we appreciate your comments, and keep watching the CBC". What would I like? Maybe for the writers of your show and the stars to see it, and think about it, and what consequences their words had, and maybe they shouldn't have been, well, the insensitive assholes that they were.

Shame on you guys, really. Put yourself in the shoes of my daughter - well, maybe not literally her shoe's, she has tiny feet- but metaphorically. Her shoes and the shoes of the women you see at the mall or the guy on the subway or the cute Downs Syndrome kids you see in the Special Olympics poster or somebody's cousin or sister or granddaughter. And you'll realize it's not funny. It just hurts.

Thanks for your time. Zoe sends her love. No, this is a lie- she has no idea who you are. And yet you took the time to insult her? In truth the only TV show Zoe watches is "Hockey Night in Canada" and that's because sometimes Daddy watches it with her for a couple of minutes before she goes to bed. Like my mom and dad did with me. Go Leafs.

Best to you and yours

Gavin Ross

It's been a week now, and so far- no response.