Family | Lessons from my daughter

I haven’t written in what seems like a really long time and for that I am sorry!

We’ve enjoyed life!

I promise to update you on everything but in the meantime, let me tell you about board games.

In our house, we play board games following rules we make-up!

The rules on the boxes are normally a little too complicated for Emily. Games for younger kids, she can manage but games for teenagers/young adults are another story.

Some games we don’t play, others, we give Emily more time or play with our cards on the table…

This works perfectly for the 3 of us but enters cousins and other relatives, it gets complicated again.

It’s difficult to explain to younger cousins why Emily can’t do things like they can. I don’t want them to look at her differently, I want them to get to know her. Once you know her, the struggles and challenges are secondary.

First, she’s Emily. Yes, she has cri du chat syndrome but she’s Emily!

Back to our game night.

Last year, we discovered “Headbanz”. Emily’s cousins were all younger than her and speaking French. They were faster than her and understood what they needed to do.

Last week, we played again.

This time, we all had a blast.

Emily knows her Disney characters more than the boys so I picked cards accordingly and helped a little but that wasn’t the fun part.

The fun part was when the cheating started. None of them were subtle about it. All of them did it and the dads joined in.

We played a game! All of us! Regardless of our age differences. From 2 to 42 years old, part English and part French. Some cheating… And lots of laughter.

We played a game!

For most, this is a simple feat. For us, it was amazing.

To see Emily having so much fun was heart warming.

So, we bought another game.

We changed the rules a little.

It’s just the 3 of us. Everybody else is gone home… So we played our way and discovered that Emily can draw!

We had 9 cards on the table and we had to find which card she was drawing.

We are still discussing this last one!

We say sheep. She says lion.

What do you think?

1. Can you tell me about your family?

My husband is German, but grew up in Taiwan. I’m from the US (Missouri). We met while we were working at an international school in China. We have three children. Our oldest, Ge Ge* is 13, Jie Jie* is 11 (CdCS), and Mei Mei* is 10. All three were born in China. We currently live in Taiwan where we work with families of children with special needs.

2. Tell me about your loved one with cri du chat syndrome.

Jie Jie is a character who loves to joke around and make people laugh. She loves legos, all animals (stuffed, plastic, and real), her baby dolls, loves to play ball (soccer, baseball, and basketball), and she loves the water.

Her two favorite places are the zoo and the beach. She thinks the penguins will dance and the pandas will break out in Kung Fu (Thank you “Happy Feet” and “Kung Fu Panda”).

3. Tell me about doctor appointment, therapies or school.

When she was diagnosed we were living in China, we would travel to Hong Kong every three months for therapy sessions. I would be given “homework” to do with her every day. After a few years, we moved to Taiwan where we could get regular PT, OT, and ST weekly – mostly in English. Her ST at that time was working on eating, so I wasn’t concerned about English. Now that she is eating, we’ve switched to an online ST program from the US. Her teacher is American. We use Skype to meet once a week. Jie Jie still has OT and PT with her Taiwanese therapist, though not as often.

School: This has been the hardest part of not living in the US or in Germany, but it has all worked out. She started out in a Taiwanese kindergarten class and did really well, but we switched her first grade year because we felt she needed more English lessons. The schools for international kids do not have a special education program. They are all private, so I began homeschooling her. After a couple of years, my husband started a small homeschool co-op that includes special education. She now goes half day there and has a special ed teacher. I believe the socialization has been so good for her, as well as learning to sit and wait in line.

4. Tell me a success story.

I once had a friend who is a special education teacher tell me that every letter, number, step, grasp, etc was a success and worth celebrating. She really encouraged me and helped me when I was homeschooling – so honestly, she has had a LOT of success stories. The most recent one though is this year she has learned to read and spell CVC words. This is so huge for me because I had hoped, but didn’t know if she could do it.

5. What else would you like the world to know?

I think the world needs to know that people with special needs are people with personalities and character. They are not just a shell sitting in a wheelchair taking up space. I love it when people look at Jie Jie and talk to her. I love it more, when the also acknowledge my other children as well.

*These are not their real names. It is what I call them on the internet. They are Chinese words. Ge Ge means older brother. Jie Jie means older sister. Mei Mei means younger sister.