Pascale LeBrasseur

I asked Emily what my next blog should be about and she said: “My most improved award!”

So here we go….

In 2008-2009, Emily decided she would concentrate on her swimming. She was going to free swim with Special Olympics and was invited to join the swim team!

This was serious swimming, they practiced once a week, doing lengths and having a coach telling her how to improve her technic.. It was difficult for Emily, she enjoyed free swim a lot but had to work hard at practice…

Practice was not her idea of fun anymore but she didn’t give up!

She kept going to practice and registered for a swim meet!

I was, once again, left speechless!

Swim meet day was beyond difficult for Emily… there was a crowd and teams from other part of New Brunswick and from the other Maritime provinces…

The crowd was loud… too loud!

Emily had to wait for her turn… the waiting was long… too long!

She had to sit with her team, I wasn’t sitting with her… she wanted to sit with us!

She cried and asked to leave and go home!

…..

I didn’t let her quit! In my world, you don’t have to win but you are certainly not quitting. You need to finish what you start! We had a chat in the change room and she went back out!

She had her first race

She did well!!!

Than she couldn’t find her t-shirt…

She cried!!! Back in the change room, chatting about quitting, not quitting, the importance of a t-shirt…!

She went back out, we found her a t-shirt! It wasn’t hers (according to her) but after some arguing and more tears, she took it!

She had 3 more races and than she was done!

It was sandwich time!

Sitting with her family and “fan club” 🙂

Emily was so proud of herself. I was so proud of her!

Most people take for granted that their child will sign-up from something and they will be good at it. They will give a 100% and they will go to meets and stay with their team and ignore their parents in the crowd because it’s not cool to have your parents there cheering for you!

Not us… every single step of every single decision needs to be discussed and agreed upon. If something doesn’t go according to plan, it can get ugly quickly, not because she is a brat but because it’s just not working according to what she was expected….

…..

That day, Emily received prizes in all her races! She was proud of herself! But not enough to register to another meet!

At the Special Olympics end of season gala, she received an award for most improved in swimming!

At the gala, once she was done eating and had her award, she called it a night. The dancing was starting and she doesn’t like loud music or crowd… once again, this was a really difficult evening for her but she stayed as long as she could.

The following year when it was time to register for swimming she decided she wasn’t swimming anymore! She hasn’t returned to swimming with Special Olympics since that 2008-2009 season! She goes swimming with her school every year but she doesn’t want to be part of the swim team and won’t even go to “fun” swim night.

I have tried to talk to her about this and see if she could be convinced to at least go to fun swim as it is as much a social outing as it is an exercise thing… but there is no way I can make her go!

When Emily says no, it means no. She is stubborn, her no is as powerful as her determination to learn how to walk was… once she makes up her mind, one way or the other, it is really hard, almost impossible, to make her go with another option. I am actually quite proud of that…

We showed her how to make decisions for herself and when we offer her an option (yes or no) we have to be sure we can live with either option. When it is a non-negotiable, we start with that, we don’t ask if she could… we tell her what we are expecting…

Experience taught us well….

Back to swimming, she finished her season which was all I had required from her when she signed up!

I am so proud of her for not quitting, for facing her fears…! Again and again…

What does it take for you to be proud of your kids?

Do they have to win?

Do they have to be the best?

What kind of pressure are you putting on them to achieve your goals?

Emily did it…. again!

She has amazed me beyond my wildest dreams!

This morning was the day. She got up feeling ready to present her syndrome to her classmates.

For you and I that would be the equivalent of opening up about our well kept secrets to the world. Or stripping in front of a crowd!

She didn’t hold back anything. She stood in front of her classmates and talked about how her doctors told us she would never walk or talk! She talked about how she’s missing part of her 5th chromosome, she showed the cri du chat awareness video and talked about our upcoming trip to New York City and our attendance to the 5p- society conference…

I was less nervous for her than I was nervous about her classmates’ reactions.

A class of 13-14 yr old kids reminded me of most of the meetings I have to attend. Some kids were listening, some were looking but were not listening, others were not even pretending to be listening…. Quite fascinating to see that regardless of the age group or situation, people in attendance are almost always the same.

Emily stood tall in front of the class and did her thing.

Her brochure, which she designed with her EA didn’t fit on the smart board properly but they managed with what they had…

She asked for questions, there was only a couple which she answered and although the teacher tried to get the conversation going it didn’t happened. Not sure if she will get questions later but if she does, I know she will be able to answer them.

Sometimes, for her to be so aware of her syndrome, is hurtful. She will tell us that she wants to be normal, to be popular and have friends… We started a journal last year where when she feels blue we track how amazing she is. We have lots of stories in there that we read together and it helps her see that she is extraordinary. That normal is boring! That she has overcome more in her life than most people will in their lifetime.

I wish people could see how much she has achieved before they see how far behind or different she is…

I wish kids would give her a chance… Even when she disconnects and can’t quite engage in their discussion, if she could really be included and not just standing or sitting alongside her peers, they would discover a really fun girl who has traveled and seen lots…

They would see Emily the way we see her!

In your life, do you take time to get to know someone before you decide if they are worth getting to know? Do you pre-judge people or do you give them a chance? What do you teach your kids to do???