When Emily was diagnosed, we were alone…. Surrounded by people but extremely alone.
Nobody around us (including doctors and therapists) had ever heard of cri du chat syndrome.
Facebook wasn’t around and the support from support group wasn’t what I needed…
Over the years, I have met many families virtually and even had the chance to meet some in person in New York in 2013.
From now on, I am going to do my best to introduce you to our extended family.
Today, let’s meet Rick, Kathy and Allie.
1. Can you tell me about your family?
Answer: As retired teachers (me 30 years teaching elementary and middle school music, my wife 31 years teaching 6th and 4th grades) we had many expectations for our retirement. That all changed when Kathy and I were asked to be honorary grandparents to Allie, (now age 11) with Cri du Chat and her siblings, Nate age 9 and Laney almost 2. We never had our own children but Nick (who was my private voice student when he was in high school) and Angie have shared theirs with us. And what a blessing they have been.
2. Tell me about your loved one with cri du chat syndrome.
Answer: Allie was diagnosed when she was a little over a month old. The geneticist said she would probably never walk or talk and might not live past the age of 5. She has proven all of that wrong. She is an amazing little girl who is reading, doing math, very definitely talking and it’s getting clearer almost every day. She is a very happy child who loves deeply and enthusiastically. She gives marvelous hugs and loves to spend time with us. She loves to play with her brother and will ask him to pretend with her and be her favorite Disney princess (of the day). At birth there were many problems with her eating and they put in a g-tube. She was fed that way for about 3 years. Today, she eats totally by mouth and much prefers vegetables and fruits to meat. She loves the old Lawrence Welk shows, loves Disney, enjoys playing on her iPad and loves her rings and bracelets. She is a very feminine little lady and wears only dresses, never shorts or jeans. She loves to tease and giggles easily. she is truly a joy
3. Tell me about doctor appointment, therapies or school.
Answer: She has gone to a variety of doctors over the years. Her parents had her to a GI specialist because of her stomach and bowel issues but today that no longer seems necessary. She had physical therapy, occupational therapy and speech therapy from a very young age. Her early intervention physical therapist also did hippo therapy (horse therapy) and she did that for a couple of summers. She is in a special needs classroom at school but is mainstreamed for several classes including music, physical education and art. She started nursery school when she was only 3 for one year and then had three years of preschool. Then entered a regular school for kindergarten. Today she is in 4th grade and doing very well.
4. Tell me a success story.
Answer: Two areas of success stand out for me. She is, today, reading at a first or even second grade level and her speech continues to improve. She is quite willing to tell us what she does and doesn’t like or want. I am impressed that she really wants to be treated like every other child. Yes there are special needs but her growth and maturity are wonderful.
5. What else would you like the world to know?
Answer: I would like the world to know that every child, special needs or typical, just wants to be given the chance to learn, to grow, to shine to the best of their abilities. That will vary for every child but can we just accept each child as the wonderful and unique being that they are, here to bless those of us who are fortunate enough to be in their lives. Please expect only the very best from any child you have but accept and treasure their best, whatever it may be.
The picture is of Allie’s first day of school this year.
Thank you Rick for jumping in and being my first featured guest.