awareness | Lessons from my daughter

Here we are, May 7th

Last day of Cri du Chat Awareness week

I hope you’ve learned some things over the past week

To celebrate Cri du Chat Awareness Week, let me introduce you to our Cri du Chat Family.

Like any good family picture, some members are missing but this is a good representation of our extended family!

Hello from New Zealand, UK, Iceland, Costa Rica, US and Canada

Awareness day 7

Of all the things I have shared with you this week, I hope you will remember that Cri du Chat is a spectrum, while some of our loved ones can walk or talk, other are in wheelchair or non-verbal.

This is a wide spectrum and all of our loved ones have potential.

To be non-verbal doesn’t mean no communication. It means other type of communication. It is amazing what our loved ones will do to achieve some sort of communication. I remember understanding Emily when the speech pathologist was convince she had no words. She had words, they were just not the words the pathologist wanted to hear.

Emily, like all the others, brings beauty, joy and love everywhere she goes. She also, like many others, have granted us many sleepless nights.

Dreams and hopes are crushed at first but we move forward and work to give our kids or loved ones the best life we can. We enroll them in therapy and learn along the way so we can help them reach their own potential.

It’s a journey!

None of our loved ones with Cri du Chat Syndrome are the same.

They are individuals who are defining themselves and finding their place in this big world.

I have had the privilege to meet other families and I have been lucky that some have agreed to talk to me in my “Interview with” series of blog posts.

Please take a minute to let me know if you enjoyed my 7 days of awareness and which day or information you enjoyed learning!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

Find more about about Cri du Chat syndrome at 5p- Society

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Cri du Chat Syndrome is a big unknown for many doctors and therapists out there. Although we (the parents) know that this is a spectrum and that the diagnosis we receive is worst case scenario, many doctors still believe that our kids will accomplish nothing.

If you’ve been following Lessons from my Daughter for awhile, you know Emily is doing lots. She is her own person and regardless of the challenges, she continues to move forward, she continues to learn and grow!

Here is what you can find about the development of kids with Cri du Chat Syndrome on the 5p- Society website

Development

Here’s some things to look for when it comes to development with 5P- syndrome.

Gross and fine motor skills
Expressive speech and language delays
Communicate by sign language, communication devices, gestures and a few basic words
Poor muscle tone (hypotonia)
Slow growth associated with failure to thrive
Constipation
Low Birth weight
Normal Life expectancy
Young adults may have premature graying
Most children walk, although at a slower pace and with a guarded gait.
Majority of children do not achieve toilet training.
Many children and adults have sleep issues.
Some have visual problems.
80% of children have a hearing condition known as hyperacusis (hypersensitivity to noise).
Children with CdCS undergo typical changes in puberty at the appropriate age
Many children have seizures ranging from Grand Mal to silent.
Very few adults are able to work with supervision.
Even fewer adults are able to live independently.
Most children with CdCS have behavioral issues
Attention Deficit Hyperactivity Disorder (ADHD).
Poor concentration.
Impulsiveness and OCD.
Biting, hair pulling, pinching and hitting.
Temper tantrums, stubbornness, frustration, self-biting, head banging and skin picking.
Autistic-like characteristics- some are dually diagnosed with Autisim.
Hand flapping, string twirling and rocking.

As you can see, there is a wide range of challenges, not all kids face the same struggles but all of them do face some struggles.

Our kids have faced more challenges in their young life that many people will face in their whole life.

Regardless of the struggles, issues and challenges…

Emily is still smiling and laughing!

Emily continues to learn and grow!

Emily will not let her syndrome define her and all the kids I have met with Cri du Chat Syndrome are the same…

They define Cri du Chat Syndrome!

We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter