ACPA Family Services

November 2014

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Family, Friends, and Finding Nemo

Thanksgiving Wishes from CPF

Every year, during our biennial Connections Conference for Patients and Families, there’s a showing of Finding Nemo.  After lunch, with the lights low, the kids scatter across the carpet with dozens of pillows and blankets and settle in for a story from the deep blue.

Family and friends swimming along together. Happy Thanksgiving from CPF!

When we first started showing the film, we had a really good reason:  The story of a brilliant clown-fish with a birth difference (one of Nemo’s fins is smaller than the other) who goes out into the world with confidence, joy, and courage is obviously a great story to share with kids who are doing the same thing.

That’s a good reason, right?

But when we talked with kids about the film and asked, “what was this story about?” we only sometimes heard mention of Nemo’s birth difference, the smaller fin. More often, kids told us that the story was about a fish (or Nemo, or a kid) who gets lost and his friends help him find his dad (or get home). To the kids, the smaller fin is a small detail. It’s not the big story. What’s the big story? It’s a story about a supportive community helping out a few of its members, Nemo and his dad, Marlin.

We still show Finding Nemo but our really good reason is revised and expanded: The story of a brilliant clown-fish with a birth difference whose family and friends help him go out into the world with confidence, joy and courage is obviously a great story to share with kids who are doing the same thing.

And this Thanksgiving, that’s where our wishes and thanks to you begin:

 We wish you time among family and friends who help you go out into the world with confidence, joy and courage.

We wish you great sharing, of small details and big stories.

We thank you for including us among your friends and for sharing your stories with us.

Crush the Sea Turtle says to his son, Squirt, “You so totally rock!” That’s exactly how we feel about you, too.

From all of us at CPF, happy, happy Thanksgiving.

CPF’s New Arrival

Prenatal Diagnosis of Cleft Lip and Cleft Palate, the newest addition to CPF’s collection of booklets and fact sheets, arrived Tuesday, November 11! Take a peek here or request a printed copy here.

CPF's new arrival: Prenatal Diagnosis of Cleft Lip and Cleft Palate

CPF’s new arrival: Prenatal Diagnosis of Cleft Lip and Cleft Palate

At only 12 pages, it’s a little booklet with some big goals. We hope it will help families:

• better understand what a prenatal diagnosis is;

• make informed decisions during pregnancy;

• prepare for the birth of a baby with a cleft lip or cleft palate;

• understand why working with a cleft palate treatment team is important.

My first days at CPF were filled with phone calls and emails from new parents, often only a few hours or a few days after the births of their sons or daughters. That was 2006, when learning about feeding an infant with a cleft, cleft treatment teams, and cleft care and repair still only happened after baby’s birth, not before. And that’s how CPF has pursued its mission since 1973: meeting and supporting families only after the birth of a child with a cleft.

These days, advances in technology, particularly in the area of ultrasound imaging, increasingly help families and health professionals identify and prepare for baby’s birth differences, including clefts. Many of today’s phone calls and emails will come from parents expecting a baby with a cleft, sometimes as early as week 20 of pregnancy!

Stephanie Williamson, Director of Family Services for CPF, is excited to add Prenatal Diagnosis of Cleft Lip and Cleft Palate to the CPF collection of booklets and fact sheets.

Stephanie Williamson, Director of Family Services for CPF, is excited to add Prenatal Diagnosis of Cleft Lip  and Cleft Palate to the CPF collection of booklets and fact sheets.

The prenatal diagnosis of clefts is a tremendous opportunity for families to learn about feeding, treatment teams, and cleft care and repair–before baby’s arrival. Our hope is that when the due date finally rolls around, families will feel confident, optimistic and excited about welcoming their newest member.

Whether it’s a prenatal diagnosis, a delivery-room surprise, or any other cleft care question that may pop up for toddlers, teens, or adults, we’re always just a phone call (1.800.242.5338) or email away.

–LGW

Parenting a Child with a Cleft: 10 Things Every Parent Should Know

CPF welcomes guest blogger, 20-year-old Sarah Stone. Born with a cleft lip and palate, Sarah shares some of her experiences with cleft care via her blog, Fearless Face. Sarah is a 3rd year university student in Ottawa, Ontario where she studies communication.

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Sarah and her parents.

10.Your child is just like everyone else.S/he has 10 fingers, 10 toes, and 2 arms. Your child also has a smile. It just needs to be fixed.

   9. You don’t need to feel guilty. It’s not your fault and there is nothing you can do about it except be there for them. There are support groups that are available if you need to seek help. But your child probably doesn’t blame you or hasn’t even considered it. They love you just as much as you love them.

http://www.nationwidechildrens.org/cleft-lip-palate-support-group
http://www.cleftadvocate.org/ftfc.html
http://www.cleftsmile.org/#1
http://www.cleftline.org/parents-individuals/publications/support/

  8. Learn to be patient. Feeding won’t be easy and your journey will be longer than a day.

  7. Never make fun of your child’s appearance. NEVER agree with what a bully said. The “yeah, it does look like you hit your lip” isn’t going to boost their confidence.

  6. Surgeries are scary for anyone. The best thing you can do is find something that calms them. In my opinion, I love it when my mom rubs my arm before going in the surgery room, even though I’m in my 20’s. It’s comforting but distracting at the same time.

  5. Encourage your child to be active in school and extra activities. It’s easy to hide at home, but it’s more fun to be active and make friends and feel proud of yourself. Achieving something like a soccer goal or dance recital will allow them to gain confidence.

  4. If your child has a bully, it’s best NOT to go to the school and make a scene. It often makes the situation worse. The best advice my parents gave me is that people who bully often have insecurities and need to feel powerful. In my own experience, I’ve seen the same people get bullied themselves. Teach them that good people get far in life while bad will not succeed. When your child grows older,  they will see how accurate this is. They should still tell an adult about the bully, but teach them that they are better and above someone who needs to hurt other people.

  3. Don’t shut them out when they need someone to talk to. You may not want to hear it, but they do. And they need you. Thank them for opening up and expressing concerns and feelings because if they don’t trust you to listen then there will be greater problems down the road.

  2. When they are getting older, they will realize that they are different and ask questions. Repeat after me: “You were born with a birth defect. Your mouth was not completely formed when you were a baby in mom’s tummy. You are just like everyone else but will have to be stronger to overcome some hurdles.”

  1. Even if they don’t show it, they appreciate everything that you have done and given up for them.

–Sarah Stone

visit Sarah at her blog, Fearless Face