The things I know!

I am aware of so many things… 

I can tell you what time it is without having to look at a clock. 

I know how long it takes for Emily to….

Wake-up

Use the bathroom

Brush her teeth

Have breakfast with or without the tv on

I know her school schedule, her tutoring schedule, when she cheers, plays baseball, sails, rides (horses) or have appointments

Yes, I write it all on the calendar on the wall,  in a paper agenda and in a shared electronic calendar but I still know before any of those tell me

I am aware of ….

How much soap she uses in the shower or if she needs help rinsing her hair

I know how long it will take her to get dress after a shower as opposed to getting dress on a morning without a shower

I am aware of the food we have in the pantry and in the fridge so I know that we are ok to have breakfast and make lunches for school

I am aware of which pieces of clothing are clean and which are in the laundry basket. I always know if what she wants to wear is clean 

I am aware of how long it takes Emily to pick an outfit

I know when I need to pick her outfit and I know how to lay her clothes on her bed for her to get ready faster


I get a little nagging feeling when she needs help.  By the time she says “mom!?!?!” I’m already on my way 

It’s not even 8am and all of this has happened already

πŸ’œπŸ’–πŸ’œπŸ’–πŸ’œπŸ’–

While I make sure Emily stays on task, I am also getting ready for my day.

I know how she is feeling.  I know when she’s healthy or sick and I know when she’s trying to fake being sick. I know which part of her body hurts even when she can’t tell me

I am aware of the help she might need to clean-up and do her hair and make-up

I know to ask her if she wants to put on jewelry

I am aware of the weather

I know how to help Emily pick her shoes, jacket and scarf for the day

I know the music she wants to listen to on the way to school

I am aware when she wants to talk and when she wants to sing

I know some of her dreams and hopes

This week, she started grade 12!


I know everything she eats

I know the shows and movies she likes

I thought I knew all of her struggles but missed a big one recently, it nearly broke my heart to learn about it

I see every changes on the floor, ground, sidewalk, hallway, stairs. I know Emily might not see them or might think their is a step when there is none. So I am aware of our surroundings.  All the time!

I know her medical history

I am her biggest fan and strongest advocate

I am her mom and the day she was born I never dreamed that my life would be like this but today, I wouldn’t change anything!

I’m exhausted but I adore Emily, she is an amazing young lady

Now…

I know I need to find her that special person to teach her more about painting so she can improve her art

I know I need to help her make connections in the community

I know I need to focus on learning about adult programs, support workers and how Emily will continue to learn and grow after high school is over
I know I need to treat her like a young adult and teach her life skills

I know she needs to learn to be more independent 

I know this is where we are at but in my heart, she will always be my baby


If you haven’t had a chance, please go check Emily’s business page on Facebook:  Emily’s Hopes and Dreams

Interview with Madonna. Let’s meet Jie Jie!


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.