friendship | Lessons from my daughter

No matter what disability one might have, Able Sail believe we can all enjoy sailing.

Lately, many new people have started to follow Lessons from my daughter, I am humbled that so many have decided to read about our journey and at the same time, increase the very small percentage of people who have heard of Cri du chat syndrome.

If you are new to our blog and want to learn more about Emily’s diagnosis, please try those links:

5p- Society

Introduction to Cri du Chat syndrome!

Raising Awareness

Every spring, we look at things to do for Emily during the summer.

It’s not as simple for us as it is for parents of other 17 years old teenager. We can’t let her use one of the car to go to her job or spend time with her friends. We are not planning her going away to college or university…

Since Emily has been 12, she’s been too old for day care and summer programs while being too young mentally for camps and programs for kids 12 years and older.

We found ourselves in a really strange place…

Jonathan worked part-time to stay home for Emily for awhile than moved into an overnight schedule so Emily could be home during the day, while he would try to sleep!

Try being the key word!

Emily has grown older and learned valuable life skills over the summer months but we feel guilty that she’s not socializing and participating in activities… allowing her so much free time has a down side… so much time watching tv, listening to music and playing with her dolls… little stimulation, little learning opportunities.

What are parents supposed to do when their child is too old for day programs but too young for the programs she’s old enough for…?

Quite a conundrum!

This year, we made some changes, Jonathan is now working from home during the afternoon and evening which allowed him to wake-up with us in the morning and spend time with Emily when I went to work.

Emily continued her tutoring over the summer months (we are not forcing her, she loves it), she joined a new cheer team, continued baseball, joined the summer program at GMACL and started to sail!

Yes, we’ve put Emily into sailing!

I had heard about Able Sail in previous years and talked to Emily about it but she wasn’t interested!

This year, she said yes! And she loved it!

Could you imagine a better place to spend some time over the summer months?

Jonathan loves fishing and boats… so this was a perfect activity for them to do as opposed of Emily and I.

Look at my girl! She’s learning about sailing and loving it!

If you are interested to learn more about Able Sail, have a look at their website here : Able Sail

I hope you can find something similar in your part of the world!

With fall around the corner and school starting next week, we say goodbye to sailing, baseball and the summer program at GMACL and we are excited that cheer is continuing and that horseback riding will be starting again for the fall season!

I can’t type fast enough to tell you about all the wonderful things we’ve done this summer.

I am a mom!

I am the mom of an amazing daughter who has special needs but I am not a special needs mom!

My needs are not specials.

What I want for my daughter is what you want for your kids.

I want her to learn and grow

I want her to reach her full potential

I want her to be happy and a little silly

I want her to have friends and be part of a team

I want her to fall in love

I want her to contribute to society

I want her to mater

I want the world to see her the way I see her

What I want for my daughter is not special at all.

I am not a special needs mom!

I am a mom!

What is special is what I had to and still have to do to get Emily anywhere near what we both (you and I) want for our kids.

What is special, is the people that we will need to help her get there.

Many doctors will continue to stare at her, study her, poke her.

Many hours of therapies will be required. Physiotherapy, Occupational therapy, Speech therapy…

While you were buying soccer equipment or ballet shoes, we were looking at walkers and communication devices.

Because, just like you I want my child, to walk, run, play, jump around… Just like you I want my child to talk to me!

When we dropped Emily off for kindergarten, we already had many meetings to discuss Emily’s abilities and challenges. We met her specialized educator (or educational assistant) and knew she would be safe. We do that, every year. This year will be her 13th year of school and I will still do that. Because, just like you, I want my child to be safe and comfortable at school. I want her to learn and grow.

A specialized education plan is required. Your child will follow the group, mine will fall behind. But regardless how far back she is, she is still learning and she deserves the opportunity to continue to learn.

When you are thinking about how you are going to pay for college and university, I’m thinking about how I am going to pay for tutoring.

When you will help your kids relocate for school or work, I will be teaching mine life skills and we will be looking at moving to a house where she can have her own space.

When your child will go for a job interview and start their career, I am hoping mine will too.

Because when all is said and done, I am a mom and what I want for my girl is what you want for your kids.

I want her to learn and grow

I want her to reach her full potential

I want her to be happy

I want her to have friends

I want her to fall in love

I want her to contribute to society

I want her to mater

Nothing special, really!

Next time you look at a kid with special needs and feel like the world has to bend backward for him or her, please take a second to think that what we want for our kids is no different than what you want.

What is different is what we will do to get there.

I not a special needs mom!