WELCOME TO

Smile with SIMON

A website primarily created for those born with craniofacial differences

SMILE

WITH SIMON

Hello, my name is Patricia Ann Simon. I was born in 1961 with a cleft lip and palate. I am a Registered Nurse and am a patient advocate for those born with craniofacial differences.

I will be sharing my story with you. Hopefully, my story will offer you support and encourage you to become the person that you want to be-happy, healthy, and helping to create a community where it is ok to be different.

I have written four children’s books (see below) for children born with a cleft lip and/or palate. These books are for children born with craniofacial issues. However, these books and the messages they contain apply to all children and adults. We are all different and we are all beautiful. Be kind to others. Extend your hand to others. Look at yourself in the mirror and love what you see! Love every wrinkle, freckle, scar, and dimple. We are all wonders!

Click "Shop Books," to purchase my books or "Learn More," for more information.

Smile with Simon Books 

Smile with Simon Craniofacial Differences book link
Simon and the Buddy Branch Craniofacial Differences book link
Simon and the Bully Craniofacial Differences book link
Simon & Patty Go to Camp Craniofacial Differences book link

Simon's Craniofacial Links & Resources

Meet Simon & Friends Craniofacial Differences Characters link

Meet Simon &  Friends

Get acquainted with Simon and his friends. Characters from the books made into dolls.
TAKE ME THERE
Simon's Craniofacial Differences Resources link

Simon's Resources

Available network resources and website links for those born with craniofacial differences.
LEARN MORE
Patty's Craniofacial Differences Story link

My Story

The story of how it all began. The creation of Smile with Simon, books and the journey.
READ MORE

Smile with
Simon Video

We may not be the same
And if we were it'd be a shame
You have a voice let go and sing
Open up just Spread your wings
CLICK IMAGE TO WATCH THE "SMILE WITH SIMON" VIDEO
Smile with Simon  Craniofacial Differences Video link

Frequently Asked Questions

What is a craniofacial disorder?
A craniofacial disorder refers to an abnormality of the face and/or the head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect, disease or trauma.

What is a cleft lip and/or palate?

A cleft lip is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse, or join together, as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate) or on both sides (bilateral cleft lip and/or palate). Because the lip and the palate develop separately, it is possible for the child to have a cleft lip, a cleft palate, or both cleft lip and cleft palate.

How do I feed my baby if it was born with a cleft?

Whether you are a new parent or caregiver, a doting relative or a health care professional, this video will guide you through the special techniques and bottles to help create an enjoyable, satisfying and productive feeding experience for a baby with a cleft palate. Feeding Your Baby includes step-by-step instructions for using a variety of special bottles demonstrated by families who once had the same questions and concerns you may have now. The video includes a frequently asked questions (FAQ) segment as well as breastfeeding and cleft palate treatment team information.
For a complimentary copy, please contact American Cleft Palate-Craniofacial Association (ACPA) by phone or e-mail:
http://www.cleftline.org/parents-individuals/feeding-your-baby/

What does Team Care mean?

Children born with cleft lip, cleft palate and/or other craniofacial differences may require individualized treatment into adulthood. Their care is best managed when a team of specialists works with the family to develop and follow a treatment plan.

Where to find a team approach for child care/treatment?

To ensure comprehensive, quality, medical care, Children’s Craniofacial Association (CCA) has opted to link to the American Cleft Palate-Craniofacial Association’s list of ACPA Approved Teams. ACPA Approved Teams are the teams that the ACPA encourages patients and families to consider first for cleft and craniofacial healthcare needs. CCA recognizes the quality of the ACPA Team Approval process and encourages CCA families to also consider first using an ACPA Approved Team. You can use the ACPA website to search for teams in your state, region, or by your address. Contact information is linked there.
Please take special care to note if the team is approved for Cleft Palate Team (CPT) and/or Craniofacial Team (CFT) when searching their listings. The website also includes information about the ACPA Team Approval process.
What about Spanish Speaking Patients?
ACPA provides information En Español

What is the #ChooseKind Initiative?

CCA envisions a world where all people are accepted for who they are, not how they look. To support this vision, they are encouraging educators and parents to incorporate CCA’s #ChooseKind Initiative during the child/student’s developing year.

What is the book, Wonder, about?

Wonder is the story of Auggie, who, after being home schooled, enters the 5th grade of a regular school. Though he’s had 27 surgeries, Auggie’s features still “look like they’ve been melted, like the drippings of a candle”, earning him nicknames like “Freak” and “Lizard Face”. Despite his physical ailments, Auggie’s an engaging boy who’s smart, funny, kind and brave, and who feels pretty normal inside. Palacio intersperses Auggie’s first-person narrative with the voices of family members and classmates, wisely expanding the story beyond Auggie’s viewpoint and demonstrating that Auggie’s arrival at school doesn’t just test him, it affects everyone in the community.
What is the myFace/Wonder curriculum?
myFace has developed a pro-compassion English Language Arts Curriculum based on Wonder. Working in collaboration with Wonder’s author, R. J. Palacio, myFace is proud to make this curriculum available online.
The myFace Wonder Project is structured thematically, rather than chronologically. This allows for flexibility in that some classrooms might only be looking at this book for a few days or a week; others might be exploring for longer – you, as a teacher or administrator, can determine the entry-point. Although each of the six sections focuses narrowly on one specific theme, all of the themes weave throughout the curriculum. These themes, Exploration of Self, The Masks We Wear, Friendships/Relationships, Bullying, Empathy, and Choosing Kindness are all explored through a variety of educational activities and exercises.

What is FGFR?

The eight disorders comprising the FGFR-related craniosynostosis spectrum are Pfeiffer syndrome, Apert syndrome, Crouzon syndrome, Beare-Stevenson syndrome, FGFR2-related isolated coronal synostosis, Jackson-Weiss syndrome, Crouzon syndrome with acanthosis nigricans (AN), and Muenke syndrome.

Are these syndromes genetic?

The FGFR-related craniosynostosis syndromes are inherited in an autosomal dominant manner. Affected individuals have a 50% chance of passing the pathogenic variant to each child.

What is Apert syndrome?

Apert syndrome is a genetic disorder characterized by skeletal abnormalities. A key feature of Apert syndrome is the premature closure of the bones of the skull (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face.

What is Crouzon syndrome?

Crouzon syndrome is a rare genetic disorder. It is a form of craniosynostosis, a condition in which there is premature fusion of the fibrous joints (sutures) between certain bones of the skull. The sutures allow an infant’s head to grow and expand.
What is Pfeiffer syndrome?
Pfeiffer syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face. Pfeiffer syndrome also affects bones in the hands and feet.

What is Treacher Collins syndrome?

Treacher Collins syndrome (TCS), is a rare genetic condition affecting the development of bones and other tissues of the face. Because this condition is also characterized by absent, small, or unusually formed ears roughly half of people with TCS experience hearing loss. Therefore, many children need hearing aids and sign language lessons.

I’m feeling all alone. Where do I go for help?

You are not alone. You are part of a community that is here to help you. Reach out to the list of Groups/Associations contained in this website for caring and support.
A portion of all book proceeds will go to our support groups.
You can make a difference! Please find a list of Simon’s favorite groups to support on our Resources Page.
1410 N. Meacham Rd
Schaumburg IL 60173
Sales: (847) 204-9220
Support: (224) 210-8076
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