Interview | Lessons from my daughter

Soon, I will be reaching out to my Cri du chat family, once again, to ask if anyone is interested to answer questions and be featured here, on Lessons from my daughter.

You might not get the comments and you can’t see how many views my posts are getting but each time I post an interview, we as a group, get more exposure. You share my post, your friends read it and they share or ask questions…

Slowly, we help spread the words about Cri du Chat Syndrome but mostly, we show people how amazing our kids are and how incredible are their achievements.

We raise awareness, together; and for that I thank you.

So today, we chat with Kathy!

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Hello Kathy, let’s start with you telling me about your family?

My husband and I were married almost eight years ago and have two boys. M is our five-year-old and N is our two-year-old, who has Cri du chat syndrome. N is our surprise baby. We were planning to adopt because my pregnancy with M. was incredibly difficult. So N surprised us in more ways than one.

We live in Texas and love being together outside — biking, hiking, swimming, trying new restaurants and doing various activities around town. Our faith is important to us and has been helpful to us as we’ve walked this road of having a special needs child.

Tell me about your loved one with cri du chat syndrome.
N was diagnosed at two weeks old. My husband, who is a physician assistant knew right away something was wrong. He kept asking me if his cry sounded like a cat and I responded with “I don’t know, honey I’ve never owned a cat before!” When we got the official diagnosis the geneticist’s first words were, “Congratulations dad, your diagnosis was correct.” It hardly felt like congratulations, especially since she went on to say that I would need a home health nurse in order to take a shower, curl my hair, or do my nails. I’m not sure why she felt compelled to say those things since I rarely do the later two anyway. Her presentation of the diagnosis was very difficult for me to process.

N is an incredibly sweet baby. He’s resilient in the face of many medical complications. He’s an observer, yet he’s already communicating in his own little ways. He’s very patient, but also incredibly motivated by the things he wants such as crinkly toys to chew on and being held and cuddled. He has great eye contact even from when he was an infant.

Tell me about doctor appointment, therapies or school.

We feel so blessed by some amazing doctors and therapists. N sees a lot of doctors: Neurology, Ophthalmology, ENT, Pulmonology, GI, Cardiology, Neurosurgery, Ortho, Urology, and Nephrology. it seems there aren’t many specialists he doesn’t see. We also added a doctor of Physical and Rehabilitative Medicine to the list last year who has been very helpful in creative problem solving and giving guidance with our therapy regime.

As his mom and main caregiver I am constantly trying to provide N the right mix of therapy. What types (OT, PT, ST, music, aqua, etc.)? How frequent? At home? In a clinic setting? I am learning that this is an ever-evolving process based on what N can handle physically, what I can manage within the schedule of our entire family, along with the skills and personality of each therapist. Just when I think I have it all figured out I discover that something needs to be added, taken away, or changed.
N’s biggest ongoing medical issue is gastrointestinal and urological complications. He’s chronically constipated and has been diagnosed with neurogenic bladder. At ten months he had surgery for a tethered spinal cord in the hopes that it work help his bladder/bowel function. We are still in “keep an eye on it” mode as he has high grade kidney reflux that has yet to resolve. His right kidney isn’t doing virtually any work and is prone to infections. We are still trying to learn more about what’s going on inside his little kidneys.

Tell me a success story.

Since birth N has not been able to eat by mouth. When he was in the NICU I was frustrated that the professionals wouldn’t let me try and feed him. He had a G-tube placed at five weeks old. Now I am grateful for their early advice because he is starting to do some tastes of food and has no oral aversions. He is doing vital stim therapy, which I believe has been very helpful to his progress. We have to drive a long way, twice a week for the therapy but I think it is paying off. He is also crawling, pulling to stand, saying “ba, ba, ba,” and never fails to giggle at his big brother.

The even bigger success story to me is not what N is doing, but how my heart is changing and falling more in love with him. I struggled to bond with him during the first year. I was overcome by the burden of his diagnosis and unable to see the blessing of his person that is buried in this syndrome. One of our favorite NICU doctors said, “Go ahead and learn everything you can about Cri du chat syndrome. Then, throw it out the window and be a student of N.” I am slowly letting go of my expectations for him based on his diagnosis and accepting who he is and who he is becoming. Two books were particularly helpful to me in that process were The Power of the Powerless by Christopher DeVinck and Disability and the Sovereign Goodness of God by John Piper.

What else would you like the world to know?

We are different because of N, but we are also the same. We still enjoy doing the same things, being with the same friends, the same things make us laugh. Our dreams have changed however, but in many ways for the better. N has inspired us and enriched our lives by showing us what is truly important. That is, he is teaching us that acceptance and love go far beyond your abilities.

Thank you Kathy! You have a beautiful families, both of your boys look adorable and N. sounds like a fighter! I really hope to meet you and your family one day!

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If you are a parent of a child with cri du chat syndrome and would like to be featured in one of my interview, please send me a note or add a comment here 🙂

If you enjoy reading my blog and would like to read other similar posts, please click on my top mommy blog icon, it will take you to a wonderful site where you can select the type of blogs you like to read. Lessons from my daughter resides in the Special needs category, you will find other great blog in our group but their are tons of great reading in thee.

Go ahead, give it a try!

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.