Tag Archives: Speech Therapy

Special Parents Confidential 64 5p Syndrome aka Cri du Chat

5p Syndrome aka Cri du Chat.

Cri du Chat, aka 5p Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with Cri du Chat, or 5p Syndrome. These individuals will likely need a lifetime of support. Parents who have children born with this rare disability are usually given a very grim prognosis. In many cases they are told that their child will never speak, never walk, and not be able to accomplish much of anything.

Defying Expectations.

But, as often is the case, many children with Cri du Chat go on to have remarkable breakthroughs and are able to overcome a lot of these challenges. New therapies and treatments along with improved technology has allowed many kids to exceed and succeed far better than anyone expected.

Loving You Big 

Like most people, I was unaware of Cri du Chat, until I was contacted by Leah Moore, who writes the blog, Loving You Big. Her daughter Jordan, now age 7, was born with Cri du Chat, and Leah’s blog has some remarkable stories of how her family’s life goes on with a child who has such challenges, but also such amazing gifts. Leah is a high school English teacher in the New York City area, and can’t help but find the irony of her life, as she says, “in love with words”, yet now faced with a daughter who struggles so hard to speak. She also talks about coping with her emotions and that she now also has two twin sons who bring their own set of issues. It’s a story that many parents of special needs kids can relate to.

Links mentioned in the podcast:

Leah’s 3 favorite posts from her blog:

The Irony of Language.  

Yes My Hands Are Full.

Welcome To The World, Baby Girl.

Video of Leah and her husband Zac, and their daughter Jordan.

Resources:

5p Minus Society. 

The Danger of a Single Story – Ted Talk by Chimamanda Ngozi Adichie.  

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Special Parents Confidential 59 Parent Stories 03

Parent Stories 03

We continue our new series of episodes dedicated to Parent Stories – real life experiences raising a child with special needs.

When I first started doing these podcast episodes, my goal was to provide two things – answers and advice from experts on many subjects of concern to parents of special needs kids, and stories of experience from other parents of special needs kids. I wanted to re-create some of the support group meetings I’ve attended where we would hear from an expert and the the parents would get to talk. Hearing parent stories can help because we all seem to do better when we know we’re not alone.

Of course, when the episodes started I mostly began finding lots of professionals willing to talk about their areas of expertise that could help all of us with our kids. And the parent stories idea has kind of taken a backseat to those episodes on advice.

Every Kind of Special Need

These episodes are going to return to the second goal. We’ll hear from parents who’s kids are either still in school, or recently graduated from school. Parents who have worked for and fought for their kids, parents who have struggled and may still be struggling, or parents who have somehow gotten through. They may not have always gotten exactly the help they wanted for their child, but they were able to get  the best they could and their kids are either on their way toward independence or already there.

The first two Parent Stories episodes dealt with parents of children with Autism, largely because I knew those two parents. But my goal is to have parents of kids with every kind of special need talk about their experiences. For that matter, I’d like to also include adults with special needs who want to talk about their lives and experiences. 

Welcome Jenny Moo

In this episode, we hear from another parent I know, Jenny Moo. Her daughter Calla was born with Cerebral Palsy, and was also diagnosed with epilepsy. Jenny talks about the treatments Calla received at birth, a cooling cap technique, that helped to minimize some of the affects of the CP, and the struggles that Calla still has to this day. She also talks about the difficulties with epilepsy, the special education supports that Calla gets, and some of the difficulties she’s had with health insurance. Jenny also talks about the new outlook on special needs and special education she experienced both as a parent, and in a class she took when she began working on renewing her teaching career.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

Helpful Links:

Cerebral Palsy Guide – U.S. based online support group and advocacy site.

Cerebral Palsy: Hope Through Research – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Epilepsy Foundation – U.S. based online information and resource guide website.

Epilepsy Information Page – from the NIH National Institute of Neurological Disorders and Stroke – fully updated research information from the National Institute of Health.

Head Cooling May Help Babies With Brain Damage – Article from WebMD.

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