Interview | Lessons from my daughter

On this beautiful Sunday, allow me to introduce you to Bonnie and her family.

Hello Bonnie, can you tell me a little bit about your family?

Our family is made up of me, my husband Blaine, our daughter Angelina(10) and our son Turner (8) I also have a step daughter that doesn’t live with us. She’s 19. I was 32 when Turner was born. Blaine was 34. We had no struggles during pregnancy.

Can you tell me more about your loved one who has cri du chat syndrome?

Turner was diagnosed just after he turned 2. He had raspy breathing and snoring which lead us to discover he had laryngomalacia, a soft voice box. When they saw him they asked about his not walking and talking at the age of 2. That lead us to an amazing pediatrician and genetics testing.

Can you tell me about doctor appointments, therapies and/or school?

Our home is located 800 km/ 500 miles from the nearest center that can execute these types of testing. Travel is not optional and with Turners diagnosis, we began traveling more than ever.

Turner is a strong headed, bossy, sensitive kid. He’s typical in many ways. His best friend is probably his sister. She can understand the struggling words he chokes out, and knows how to make him laugh.

His school has been a major partner in his progress. They have found his words, they have taught him to count. He can read about 200 sight words!!! I nearly cry just thinking about it!! They taught him to potty train, ride a bicycle with training wheels and are now working on riding a scooter. They even supported us by buying jewelry when we took the puzzling piece challenge to earn him an iPad. We couldn’t do it without them.

Tell me a success story!

This winter, the boy that would never talk or walk, learned to read and ice skate! There’s nothing more Canadian than ice skating!!

Anything else you would like the world to know!

Turner is not a common kid. He has no fear and will stop at nothing to do or get what he wants. That, I believe, will lead him to successes beyond our imaginations. ❤️

Turners diagnosis encouraged his step sister Haley to enroll in post secondary school to become a Special Needs Teaching Assistant. We are quite proud of her.

This is Turner and grandpa swordfighting with pool noodle light sabers.

Thank you Bonnie!

Today we chat with Brooke!

Hello Brooke, can you tell me about your family?

We are a family of 5, my husband Shane, Kali, Kera and Kasi! Kali and Kera are 6 year old twins, Kasi is 1 1/2 years old! We live in Avis, PA! I’m a stay at home mom!

Can you tell me about your daughters who have cri du chat syndrome?

Kali and Kera both have cri du chat syndrome! We found out Kera has 5p- when she was 7 months old and we found out Kali had 5p- when she was 10 months old! Kera is our adventurous one, she crawls, walks with a walker and recently started walking with one hand held! She is nonverbal and not potty trained yet! Kali is more content being left alone playing with toys that play music and light up! She doesn’t crawl or walk! She had corrective surgery on her foot in Feb 2015 and we are using an up and go to try and get her walking! Kali doesn’t do anything on anyone’s terms but her own, some days we can get her to walk in the up and go like she’s been doing it for years and some days she acts like she has no clue what she is supposed to do in it!

Tell me about doctor appointments, therapies and/or school?

Our doctors appointments for the most part have dwindled off! Kera still sees her neurodevelopment doctor every 6 months because she is on risperidone, Kali sees him every 2 years! They both see there PCP every 6 months still! Every other doctor, orthopedics and cleft clinic(Kera), we see once a year! Their ENT dismissed us now that Kera doesn’t have ear infections anymore and Kali got her tonsils and adenoids out! We drive 2 hours for orthopedics and cleft clinic, 1 hour for our neurodevelopment doctor, I did research and found the best doctors closest to us for the girls! They get PT, OT and Speech in school and then I take them to outpatient PT and OT once a week and I take them to Penn State University once a week for speech also! They absolutely LOVE school, they love being in their mainstream classrooms with all of their friends and they love being in their multidisabilities classroom too because they get to be on the floor and do what they want for a little bit!

Cab you tell me a success story?

We FINALLY got Kera to walk with one hand held, after years of trying! We are getting Kali there, like I mentioned above, she is our stubborn one and only does stuff on her terms and nobody else’s!

Is there anything else you want the world to know?

Our kids understand more than people think they do! Just because they are nonverbal doesn’t mean they don’t know what you are saying to them! If we are talking to them and tell them something funny they will laugh before we do!

Kali
Kera