Cri du Chat Awareness Week – May 1 to 7 2016 (Day 6)

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


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 daughterβ€˜s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter



A to Z Challenge – Day 23 – W


White…. As in white shoes!

When you have fine motor skill issues, something as simple as tying your shoes becomes problematic.

Add some global developmental delays (physical and mental) and tying shoes can be a huge challenge.

This is Emily’s reality!

Tying shoes is not a milestone she’s achieved yet and to be honest, it is not a milestone we are working towards either because we have found awesome shoes without shoe laces.

Emily has boots, flip flops (sandals), cute flat shoes and SKECHERS!!!

We love Skechers!  We love them so much and they are not paying me to say this, I doubt they even know we exist 😳

Skechers have opened-up a world of possibilities for Emily and given her her independence.

There shoes are stylish and comfortable and between Em and I, we have many pairs.

We picked those up in New York City!


When her cheer club said she needed completely white shoes to compete, we confirmed that the shoe laces weren’t mandatory and went shopping online.

We found the perfect white shoes from Skechers and decided to look for them locally so Em could try them.

There isn’t a Skechers store here 😒 which is probably a good thing for our budget $$$.

The store who sells them didn’t have Emily’s size in stock, we had her try the same shoe in a different color, agreed that size 9 is still valid and we ordered the white ones to be delivered at home.

The shoes arrived timely and unfortunately dirty 😒

We went back to the store, showed them the shoes, agreed that this was unacceptable, returned the shoes and ordered and new pair. We even got a discount for the trouble.

This is where it gets funny!

I returned the shoes on either a Thursday or Friday. The new pair was delivered on Monday and it came from our local store…

Did you guess what happened yet?

We received the dirty shoes that we had returned!

My understanding of what happened is that they were not removed from inventory and when the warehouse got the order, it looks at the stores closer to us, saw a pair in inventory sent the request, someone at the store got the request and sent us the dirty shoes back.

Seriously, the exact same pair was shipped to us a second time.

The store manager was mortified.

I returned the shoes, again.

The store ordered 2 pairs from another store and called me as soon as they arrived. Emily tried them on, we picked the whitest of the 2 pair and finally had competition shoes!

4 trips to the mall… I should have ordered them online 😜

A to Z Challenge 2016 – Lessons from my Daughter (PR) #709


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