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
- 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!
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