therapies | Lessons from my daughter

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.

It’s Sunday night and Emily asked me to watch the Billboard Music Awards with her.

So here I am, on the couch, feeling slightly guilty for having spent the last 2 days sitting around, enjoying my family, watching Netflix and eating.

Tomorrow is a holiday in Canada… Tomorrow will be laundry, cleaning, organizing and everything I should have done already.

Maybe I can start writing about our trip to Florida… I have so much to tell you.

But for now, here is my newest interview.

Let’s chat with Amy

1. Can you tell me about your family?

We are a family of 5. My husband Jay and I have Colin 17, Nellie 15 and Braley 11. Nellie has CDC. We live in upstate NY. We are a busy family, always on the go. Our children are all involved in sports and that takes a lot of our time

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

Nellie is super sweet and has blessed our family in ways we could never have imagined. She has taught each of us about being kind, patient and understanding. Nellie attends a life skills class at our local high school and she knows everyone. She enjoys many of the same things that all 15 year old girls enjoy. She always has her iPhone in hand, loves music and you tube. She enjoys her bike riding and swimming. She plays on 2 basket ball teams, baseball, football and bowling. Most of her sports are played through our local miracle league. She also spends a lot of time playing littlest pet shops. Above all I would want to tell you that Nellie is a gentle, sweet, very funny, well behaved little girl who is adored by all who know her.

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

When Nellie was little our life was a whirlwind of doctor & therapy appointments. We saw every type of specialist imaginable. Nellie was sick as young child and spent a lot of time in the hospital. She had open heart surgery and palate surgery. She had a spinal fusion done at age 13 for scoliosis. Now, at 15 she is very healthy and rarely even gets a cold. She had failure to thrive as a baby so weight was always a big issue but she outgrew that too. Nell has always had a ton of therapy and I believe it made all the difference. Speech has always been a big issue so she has always had speech every day, she has taken sign language since she was baby and still has a sign teacher at school, she speaks pretty well but we always wanted to give her every opportunity to communicate. Music therapy was fantastic for Nellie. She has also always had PT & OT. She gets all her therapy through school and they are amazing. She works with her high school class for 2 hours a day at different local businesses. I have to say that playing sports, Sunday school and Girl scouts were all important too.
4. Tell me a success story.

Our CDC are always amazing us so it is very difficult to pick one success story. A few stick out. 1. Getting the training wheels off her bike. 2. Learning to read! She can read hundreds of words, thanks to finding the right reading program for her. 3. It may be strange to hear a parent say this but being able to use a iphone. It gives her a way to communicate with all of us. I feel so much better knowing she has a phone with her to reach me. She knows how to use a smart phone better than I do. She keeps it charged and is actually really responsible with it. And it is typical for her age!!!!

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

I would like people to know that with a lot of support these children are capable and will continue to amaze us. We were so lucky to have access to great therapy & medical care. I never believed in the “it takes a village theory” but I do now! Without wonder teachers, therapists, programs & doctors I do not know where Nellie would be. We have also been blessed with a loving & supportive family. We could never have gotten this far without “our village”.

Thank you Amy for taking the time to chat with me.

Here is Nellie and her brother before homecoming dance