I’ve actually known about Cri du Chat Syndrome for a few years…before I had Brooke I had a friend in town that had a daughter with this syndrome and I spent one afternoon quizzing her at the mall while our kids played…miss you Taimie!
And through blogging I’ve met other fantastic women that have children with CdC, and I asked Tiffany from Elastamom’s Excerpts to write a piece for me, seeing as how last week was the first ever annual international Cri du Chat Syndrome Awareness Week! Yes, I know, last week…but my auto post didn’t work and I suck…but anyway…here’s Tiffany!
When I started my blog almost 4 years ago, it was because I wanted to give others hope. I wanted to show those who were looking for information on Cri du Chat/5p- Syndrome and anyone who happened to come across my blog what life is really like for us with Olivia, warts and all. But I definitely wanted to focus on the good and the happy and the hope because that’s what I was most surprised by. I had no idea there would be so much joy in raising a child with special needs; I wanted to let others know that the happy definitely outweighs the sad.
This week is the first annual international Cri du Chat awareness week. The syndrome is very rare and not many people, including medical professionals, are aware of it. This week we are hoping to introduce as many people as we can to the syndrome and the families that are affected by it. When Olivia was born they suspected the syndrome because of her cat-like cry; she sounded like a kitten. Cri du Chat means “cry of the cat” in French and a French doctor discovered the syndrome. I usually refer to it as 5p- Syndrome, it’s other name, because Olivia is missing the “p” part of her 5th chromosome. Every time I say “Cri du Chat” to someone they look at me like I’m crazy anyway. Although 5p- doesn’t get that much better of a response but at least I’m speaking English.
Most children with the syndrome have low muscle tone, are non-verbal or are limited in their ability to speak, have mental retardation and physical delays. Olivia has all of those things except she is VERY verbal. If you’re not around her all the time, she’s difficult to understand at times. But we can understand her 99.9% of the time. She gets majorly pissed that 0.1% of the time when I can’t understand her, let me tell you! She requires an aide at school, she is mainstreamed for most of the day but does receive special education services. I have no idea what the future holds for her but I do know I won’t be an empty nester. And that’s totally ok with me.
I think this awareness week is a chance to give Olivia a voice. To let people know that even though she has this syndrome, it is not who she is. It does not define her. It is not her essence. It’s just her syndrome.
Olivia is an 11-year-old girl who would live in her one-piece, footed pajamas and slippers 24 hours a day, 7 days a week if she could. In fact, she’s been to a few soccer games lately in her “flippers” as she calls them. Her hair is super thick and brown and luscious and her eyes are the color of melted milk chocolate; she has a megawatt smile that she shares with everyone. She loves to play her new pink Barbie guitar that we found at a garage sale for $1 and sing “Clementine”. She loves all things Disney, Tom and Jerry and Spongebob. Her brothers are her best friends. Being with me is her favorite thing in the whole world. She loves her Daddy. She screams at the top of her lungs with excitement when my Mom comes over. She loves dogs. She has a crush on a boy on her baseball team. She has friends at school, she participates fully in everything at school. If she doesn’t get her Oreos after dinner, there’s hell to pay. She loves foreign accents and opera singing. She is joy personified. To know her is to love her.
That’s what I want people to take away from this week. People with disabilities are just…people. They have a mom and a dad and siblings and likes and dislikes and feelings. They are just people. Just like you and me.
Visit here for more information on 5p-/Cri du Chat Syndrome.