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Part 4–One From the Team: Speech Therapy and the School-Aged Child

Why Aren’t We Done Yet?

My child already had speech therapy when she was preschool age.  Why does she need speech therapy again when she’s school-age?  

First, keep in mind that “speech” includes many different areas that change over time.  Ongoing changes with your child’s mouth, muscle control, dental development and learning can lead to some periods of a break from speech therapy followed with a course of speech therapy. Some children require secondary surgeries on the palate to improve and normalize speech and resonance (oral speech vs nasal speech).

In early childhood and preschool programs, the emphasis of the speech therapy may have been to target language skills. This includes comprehension of language, vocabulary, grammar usage and the development of more complex language that precedes reading and writing in school. If your child needed this type of intervention, the quality of the speech may have been considered less a concern at that time.

Learn more about cleft care and the school-aged child, here.

Learn more about cleft care and the school-aged child, here.

As children progress into elementary programs, the differences between their speech and resonance and that of their peers may draw unwelcome attention to your child. He or she may be in need of a secondary surgery on the palate to improve their speech production. Children may get lost to follow-up with their cleft team due to family relocations, changes in insurance or just because parents and school professionals may believe that the child’s speech problems have settled down and now seem to be fine. However, if the school-based speech pathologist suggests the need for additional speech therapy it is very likely needed.  Remember the importance of your regularly scheduled treatment team evaluations in supporting the timing of speech therapy.  Additionally, your team will help minimize the delay in identifying the need for additional surgical management for speech.  Although your school-based speech pathologist may suspect speech issues are related to the palate, he or she may not feel qualified to make the recommendation. The coordination between the two settings is critical to the correct timing and outcome of surgical management, if needed.

Secondly, some speech error patterns, even in the presence of normal palate structure and function (meaning they are not in need of an additional palate surgery for speech) can take years to correct.  If this is the case for your child, consideration of additional speech therapy with a specialist in cleft palate may be needed.  The school-based speech pathologist may be hesitant to recommend additional speech therapy outside of school, suggesting that they are not doing it correctly or worried about the school having financial liability. However, it is often a very specialized speech approach that is needed and not all school-base speech pathologists have the expertise in this unique specialty area.

Finally, as you consider speech therapy for your school-aged child, always:

  1. Consult with your team speech pathologist about the progress or lack of progress.
  2. Discuss the need for possible additional speech therapy with a speech pathologist specialized in cleft palate.
  3. Share your questions and concerns regarding insurance coverage and funding or consult with the social worker on your team.

Speech and resonance issues can certainly require speech therapy into the school years but you should see continued progress over time. It’s important that all providers, including the treating Speech Pathologist, have an understanding of structural limitations and how these limitations will be managed over time to promote solid speech development.

Miss earlier posts in this series?

Part 1Speech with the Team, Speech at School here.
Part 2–Building the Relationship Between Parents, Team and School here.
Part 3–Timing and Need for Speech Therapy here.

About this series: We recently asked Theresa M Snelling, M.A.,CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years. If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.

 

 

Part 3–One From the Team: Speech Therapy and the School-Aged Child

Timing and Need for Speech Therapy

Do school-age children with clefts always need speech therapy?

No.  Some children receive early intervention services through their Early Intervention (EI) programs and have no need for further speech therapy.  Some children have secondary surgeries to address speech issues that otherwise aren’t responsive to therapy alone. Many of these children progress to normal speech and resonance.  Another small percentage of children will not require speech therapy at all.  However, the goals of team care, timing of surgeries and early intervention for children are all aimed at speech and resonance typical of their family and peers! Achieving these goals may take some years of therapy and/or additional surgeries, but the goals are still the same.

For example, if an elementary school-aged child demonstrates hypernasality or speech issues that are not age appropriate, speech therapy may be needed.  I have met patients at a follow-up cleft team visit who’d been told previously that their “speech was acceptable for a child with a cleft!” That is not the expectation.  At times, a child’s speech may be impacted due to orthodontic needs or orthognathic surgery plans that are not yet age appropriate. The child may be wear an expander that reduces speech clarity, but this is typically a temporary issue and speech therapy may not be recommended at that time. However, follow-up evaluation should be in your child’s team plan.  This point speaks to the benefit of your cleft palate team guiding you through the timing of therapies, surgeries and procedures. Sharing all of this information with your school-based speech pathologist will make for easier transition and planning in all aspects of your child’s school years.

I understand most of what my child says, but his school says teachers and other kids don’t. What should we do?

As a fourth grader, Jena Keith created a class project that helped her classmates learn about her cleft, surgeries, and speech.

As a fourth grader, Jena Keith created a class project that helped her classmates learn about her cleft, surgeries, and speech.

Most parents and siblings can understand their own family members at a level that others in their schools or communities cannot. It is very important to take this message to heart and follow-up with your team speech pathologist or your school-based speech pathologist.

At times, it has been difficult to qualify some children with speech or resonance (oral vs nasal) issues for school-based speech therapy. If it is determined that speech issues do not impact a child’s educational success–the common standard used for determination of services–that child may not qualify. However, if your child is not understood at a level equal to his peers, by teachers and peers, that is an impacting issue for educational success! Many parents have verbalized their concern for their child’s self-esteem and fear their child is not fully participating in school activities because of their speech. Every school district is different, but most will see this as an educationally impacting issue and qualify a child for school-based support.  Let your team, community-based or school-based speech pathologist provide an evaluation and follow-up with the classroom teacher’s concerns.

 How can parents help support healthy speech development for school-age children with clefts?

  1. Be a good model! This will not eliminate the need for speech therapy, but it is a good start for any child. Imitating your child’s speech errors as “cute” can prolong the use of these patterns.
  2. Access the resources in your community, including Early Intervention (EI) programs (Birth to 3 years) and Child Find programs (Birth to adult).  These free programs are available everywhere and most children with a cleft palate will be eligible for services as needed.
  3. Follow-up with your team according to your team’s recommendations! If a long lapse in team assessment has occurred, children may have needed another surgery, another set of ear tubes, a dental procedure or a palatal appliance. The later a necessary surgery or procedure is done, the more challenging it is to correct articulation and resonance errors in the child’s speech.

Miss earlier posts in this series?

Part 1– Speech with the Team, Speech at School here.

Part 2–Building the Relationship Between Parents, Team and School here.

 
About this series: We recently asked Theresa M Snelling, M.A.,CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years. If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.

Part 3 of 8
Miss earlier posts in this series?

Part 1– Speech with the Team, Speech at School here.

Part 2–Building the Relationship Between Parents, Team and School here

Part 2–One From the Team: Speech Therapy and the School-Aged Child

Building the Relationship Between
Parents, Team and School

What should parents know about coordinating speech therapy between the team and school?

Be aware that both the team speech Pathologist and the school-based Speech Pathologist have very busy schedules! This should not detract from your child’s needs being met or affect what services your child is eligible for but busy schedules are a reality that must be managed. When parents can assist with the communication between the two providers–school professionals and treatment team–things can happen more efficiently.

Some of the ideas that have helped with coordination between our center and the many school districts in our area may be helpful to others, as well:

Offer to initiate an email between the two speech therapists. I work on a local team and I see children in my private practice that specializes in cleft. In both settings most of my patients receive services at school as well. When a parent initiates an email between the school and center, it gets things moving! And, be sure to ask to be copied on all correspondence, too.  This way, you know the communication happened and can nudge things along if progress slows.

Why commit to speech therapy for school-aged kids? Meet singer, actress and dancer Jacqueline Denise Militano who found her voice and a passion for the stage.

Jacqueline Denise Militano
singer, actress, dancer

Bring any reports from your school-based speech pathologist and/or your private speech pathologist in the community to ALL team meetings! This includes IEP reports or goals and progress reports. When I am evaluating a child on the day of team with a short amount of time, the input from the treating speech pathologist at school will often guide me in the evaluation.

Why commit to speech therapy for school-aged kids?
Meet singer, actress and dancer Jacqueline Denise Militano who found her voice and a passion for the stage
.

Share all team reports with your school-based speech pathologist. Be sure that he or she actually sees the report! If the report is put in your child’s school folder housed in the office, it may not be read by the ones that should see it. Many of the school-based speech pathologists feel they are part of your child’s team (which they are!) when they are included in the reports between meetings.  You can even invite them to your child’s team evaluation if they have time.  This is often difficult based on the school schedule, but inviting them will go a long way toward emphasizing their value, contribution and participation in your child’s coordinated plans (both medical and educational).

Part 2 of 8
Miss the first post in this series?
Find Speech With the Team, Speech at School here.

About this series: We recently asked Theresa M Snelling, M.A.,CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years. If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.

Part I–One From the Team: Speech Therapy and the School-Aged Child

Theresa M Snelling, MA, CCC-SLP shares 30 years experience with patients, families and us, in this eight-part series, One From the Team, Speech Therapy and the School-Aged Child.

Theresa M Snelling, MA, CCC-SLP shares 30 years experience with patients, families and us, in this eight-part series, One From the Team, Speech Therapy and the School-Aged Child.

 About this series: We recently asked Theresa M. Snelling, MA CCC-SLP, to help us learn more about speech development and support for the school-aged child. We are so pleased to share her response with you in this special eight-part, One From the Team series, Speech Therapy and the School-Aged Child.

 Teresa is clinical coordinator for the Cleft Palate and Craniofacial Center at Rose Medical Center, Denver, CO and has been working with patients and families affected by clefts for more than 30 years.

 

Speech With the Team, Speech at School

Part 1 of 2

Look for part 2 tomorrow:
Building the Relationship Between Parents, Team and School

What’s the best way for parents to engage with speech services through schools?

Request an evaluation with the speech therapist directly or ask for a Child Find evaluation.  It is typically very effective to bring to the school your child’s team records and any assessments done by other speech therapists involved in your child’s care.

 My child works with a speech therapist through his treatment team. Why does he need another speech therapist at his school?

Speech therapy services provided in a clinical/hospital setting differ than those provided in a school setting in many ways.  School-based services can offer additional speech therapy that supports the goals and objectives determined by the speech therapist on the team. With limits on resources and insurance coverage, the additional therapy, when coordinated between the two settings, can truly result in more consistent progress.   Most children with articulation (sounds) and resonance (simply put, sounds in the mouth=oral vs. sounds in the nose=nasal) issues will at some point require treatment from a Speech Pathologist associated with their team or in the local community and who is specialized in speech issues related to cleft.

School-based speech therapy allows for direct assessment and treatment for your child’s success in being understood by their peers and teachers/other adults, at school!  In a hospital/clinical setting, children may make consistent speech progress, yet there are no ongoing changes or noted progress at school. In a perfect situation, a child would receive services in both school and clinical settings to optimize carryover and generalization of speech skills to all environments!

The key to benefitting from school-based services is a Speech Pathologist who is willing to investigate the differences in techniques, surgical management and cleft related speech patterns if their experience is limited.  In a local survey I did in our metropolitan community, the Speech Pathologists surveyed reported only 1 or 2 children with cleft palate or related speech needs on their caseloads over an average of 15 years working in the schools. That small number makes it difficult for the speech pathologist in the schools to be specialized in the speech needs specific to children with cleft palate. That does not mean you should avoid speech therapy through the schools; for many children it is their only option. In this case, your role as parent advocate and facilitator connecting both speech therapists involved in your child’s care ensures more and varied intervention for your child (keep in mind that signed releases are an important first step for both the school and team speech therapists).

Can our team speech therapist help the school speech therapist?

In our community, we often find that children are being seen for speech therapy at school but not by a speech pathologist specialized in cleft palate speech and resonance issues. The primary reason for this, typically, is lack of funding for the private speech therapy, and as previously noted, limited experience on the part of the school-based Speech Pathologist.  It’s important to discuss with your team speech pathologist, at your child’s regular team visits, the need for collaboration between the speech pathologist specialized in cleft palate speech needs and the school-based speech pathologist who may be providing your child’s only therapy.  The school-based speech pathologist has a Master’s Degree in Speech Pathology; however, many university programs may offer no instruction on cleft palate speech issues, or possibly only a lecture as part of other classes. In fewer university programs, an entire class might be devoted to speech and cleft palate.

Your school-based speech pathologist has the background to address most of the needs your child may have related to cleft palate, but will likely need input from the team speech pathologist or a community-based speech pathologist specialized in cleft palate speech and language needs.

In the 30 years that I have worked in a moderately large metropolitan area, I have found “MOST” school-based speech pathologist appreciate the guidance and recommendations from the team.  In spite of large student caseloads, most want what is best for the children they serve and welcome the support.

Does speech therapy at school cost money?

No.  Speech therapy in the schools is funded as part of special education. Please don’t let that worry you! I have met many parents who didn’t want their child labeled or pulled out of class. Children do need to go through development of a formal EIP (Individualized Educational Plan) which includes assessment, data collection and parent meetings. This process is to protect your child. No school I have ever worked with wanted to deliver special education services that were no longer needed! It is a fear verbalized by many parents I have worked with over the years. However, in a typical school day in a typical classroom, children are coming and going for extra help for many reasons, and your child moving in and out of the classroom will be another typical event.  I add this information to this question because even though it is a free intervention provided by the schools, many parents have resisted because of the concern for the process.*

*CPF staff note: Regarding the concern for labeling and social stigma associated with cleft and speech services, parents, teachers and school counselors often emphasize that a child who struggles with speech issues may already suffer some social challenges because of them. Helping a child access resources that improve speech to some degree empowers the child to improve his or her social experience and with support of school staff, may be an opportunity to destigmatize the cleft and its effects on speech by helping peers learn more about it.

If you need assistance locating a team or a cleft-specializing speech therapist, please, drop us a line or give us a call! 1.800.242.5338 or info@cleftline.org.

A Good Question: I’m an adult with a cleft, do I need to see a cleft team?

A Good Question is a series of posts inspired by common questions from patients and families.

Childhood and teenage years are busy ones for cleft care and repair. As those final care-and-repair list items are completed, older teens and young adults look to a future with few cleft team appointments on the calendar and for many patients, little or no care may be necessary for many years to come. However, the great majority of individuals with clefts will need specialized cleft care again at some point in their adulthood. Why consult with a professional specializing in adult cleft care?

butchin2

Gina Butchin continued researching cleft care options throughout her young adulthood.

New treatment options may exist that weren’t available previously. Many adults of all ages tell us that they are satisfied with both the appearance and function of their cleft repairs and wouldn’t change a thing; we love hearing this! Occasionally we do hear from adults who’ve always struggled with some part of the repair that’s never been quite right. Difficulty breathing, appearance of the lip or nose, and speech issues are a few of the broad categories of concerns for adults with clefts. If one of these challenges is yours, consider a consult with a cleft team or professional specializing in care of the adult patient. A new technique or other resource may make difference for you. Meet Gina Butchin, an adult who had her last surgery at age 40.

Complex dental care should include a consult with a cleft specialist. Your favorite family dental practice is a great source for routine cleanings, fluoride treatments and checkups. In some cases, if a prior consult with a cleft-specialist has given the green light, your family dentist may even manage routine treatment for cavities and application of sealants. But when it’s time to care for any number of more complex dental issues–loose or cracked teeth, extractions, dental implants, application of orthodontia or any other non-routine intervention–your first call should be to a team or professional specializing in adult cleft care.

Mid-life changes aren’t limited to your eyesight and waistline. Your last cleft care may have been 30 years ago. You may have had a great repair with no problems and for many years, hardly even thought about your cleft. But lately you’ve noticed something feels different. Perhaps a tooth doesn’t seem as stable as it should be or you’ve become aware of your breathing in a way that you hadn’t previously. Whatever it is, the change is very probably a normal part of how your cleft and its repair are growing and changing right along with the rest of you. As soon as you notice changes in your mouth or cleft, consult with a team or professional specializing in adult cleft care so that those changes can be managed in the most pro-active ways possible.

As an adult with a cleft, what are your experiences with ongoing cleft care?

 

Drum Roll Please…

With big smiles and cheers, we’re thrilled to announce our

2014 Connections Conference 

for individuals and families affected by cleft lip/palate or other craniofacial conditions!!  Connections will be held March 22, 2014 in Indianapolis, Indiana and you can learn all about it here.  We hope you’ll consider joining us!

CNX-Postcard-Front2.0

The Cleft Palate Foundation hosts a Connections Conference every two years in different cities around the country.  This year, we’re looking forward to adventures in the MidWest with many Families of Champions (our conference theme).

Connections offers a unique mix of education, friendship, and fun and is designed for the whole family.  Some highlights of the conference include keynote addresses by David Roche and Marlena Blavin, breakout workshops covering common topics of interest, a Q&A session with treatment team specialists, and a panel of families sharing insights from their own journeys in cleft/craniofacial care.  For the kiddos, we’ll have some four-footed, furry friends stopping by, kids’ yoga and movement fun, professional storytelling, and more!  Still on the fence about coming?  Let’s throw a pizza party, wine & cheese reception (cookies & milk offered too), and Connections t-shirts into the mix!  Okay, you’ve gotta see by now why we’re a little excited for this event…  It’s only $30 for the first adult, $20 for additional adults and teens, and $10 per child to attend and you can register online.

        ACPA-0449_rev

If you still have questions after looking through our website, please feel free to give me a call (800-24-CLEFT) or leave me a comment on this post.  Please register soon so we can plan all of the best for you!  If Indy’s a little too far this go-around, please stay tuned for future conferences in your area.  (Wouldn’t hurt to drop us a note about how great your city is too… future locations are under review!)  We love interacting with you all on social media, email, and the Cleftline, but we’d be so happy to meet you in person too.  Hope to see you at Connections 2014!

 

**Also, please note our new blog feature, ‘Subscribe via Email’, on the right side of the page. Get new CPF posts delivered to your inbox!**

We Can’t Wait to Connect in 2014!

Happy 2014 everyone!

We hope you all had a wonderful holiday, and that you are ready to read, comment, ask, answer, interact, and just generally connect with us and others here on Cleft Connection this year!

The new year is a great time to regroup and refresh so we’d like to take this opportunity to share a refresher on what exactly it is that we do here at the Cleft Palate Foundation and hopefully on how we can help you.

So let’s get started!

So what/who is the Cleft Palate Foundation?

The Cleft Palate Foundation (CPF) is a 501(c)(3) nonprofit organization founded in 1973 to be the public service arm of the American Cleft Palate-Craniofacial Association.

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Our mission is to serve individuals and families affected by cleft lip/palate and other craniofacial conditions by connecting them to team care, providing education, and offering personal support.

What does the Cleft Palate Foundation do?

We:

  1. provide information to educate patients, families, and professionals,
  2. make referrals to cleft/craniofacial treatment teams and advocate for family-centered team care,
  3. offer telephone and online support: 1-800-24-CLEFT (800-242-5338), info@cleftline.org,
  4. host the Connections Conference: for Families, Caregivers, and Patients,
  5. provide Cleftline Teddy Bears with repaired cleft lips,
  6. share stories from and for affected individuals and families,
  7. award a minimum of three $500 college scholarships each year to young adults affected by cleft and craniofacial birth defects,
  8. fund research to learn all we can about prevention and care, and
  9. award scholarships to healthcare professionals.
How can I find out more about one or more of these services and programs?

You can click on the links above for more information on the specific service or program you are interested in.

For more information on #s 1-4 above, call us at 800-24-CLEFT or email us at info@cleftline.org to speak with our Director of Family Services, Stephanie Williamson.

For more information on #s 5-9 above, call us at 919-933-9044 or email us at admin@cleftline.org to speak with our Foundation Administrator, Emily Kiser.

Questions? Comments? Just want to say hello?  Let’s connect in the comments section below!

A Good Question: Is there a good pacifier for babies with clefts?

A Good Question is a series of posts inspired by common questions from patients and families.

Although there are no specialty pacifiers for babies affected by cleft lip and palate, a bit of education and a lot of improvisation may help parents satisfy baby’s intense need to suck.

Successful sucking relies on the creation of a vacuum, an impossible accomplishment for a baby with a cleft.  Have you ever tried to use a drinking straw that didn’t work? Only to discover that it had a hole in its side? That’s very similar to what happens when a baby with a cleft tries to suck: She’s always pulling air through with her suck making it impossible for her to create the vacuum-suction needed to hold the pacifier in her mouth.

For the youngest babies who seem to enjoy a pacifier, many parents and caregivers simply settle in for the duration, gently supporting the pacifier in baby’s mouth so baby may enjoy the satisfaction of sucking without depending on true suction to keep the pacifier in place.  Many parents tell us they have the best luck with the softest, silicone-based pacifiers they can find. The pacifier’s size and shape are other considerations and may vary depending on size and location of the cleft in the palate.

MINOLTA DIGITAL CAMERA

For older infants, perhaps six-plus months, who may have the motor-skill development to support their own pacifier, something like the WubbaNub* might be a good alternative.

*CPF does not endorse or recommend any particular product or brand.

What pacifier advice do you have to share?

 

Today is Giving Tuesday!

What is Giving Tuesday?

Giving Tuesday is a movement to create a national day of giving to kick off the giving season on the Tuesday following Thanksgiving, Black Friday, and Cyber Monday. In the same way that retail stores and customers take part in Black Friday and Cyber Monday, nonprofit organizations and the community come together for Giving Tuesday.

Giving_Tuesday_logo_with_buttonHow can I give?

This Giving Tuesday we at the Cleft Palate Foundation are raising funds to print our feeding video in Spanish. As many of you know – and have experienced firsthand – learning to feed a baby with a cleft can be TRICKY. If the parents are not informed about proper feeding techniques, the baby might not receive enough nutrition and therefore not gain essential weight needed to survive. Your gift today will support new parents all over the world in feeding their babies and SAVE lives! [Click here or on the button above to make your secure online gift.]

What if I would like to give to another one of CPF’s programs?

That would be wonderful! To give to another one of our programs – including teddy bears, research, college scholarships, etc. – you can use this secure donation page.

What are other ways I can help?

Check out these links for more ideas on how you can spread awareness and support CPF!

Thank you for joining us this Giving Tuesday in the celebration of sharing and giving back!

Strangers and Friends Alike: Part II–Responding to Common Questions about Baby’s Cleft

“I fell off a mountain!”

“I don’t know.”

“My sister hit me!”

“Nothing’s wrong with my lip.”

“It was sword fight with a lion!”

“I was born with a cleft lip and after the doctors fixed it, I still have this scar.”

We get to hear lots of stories about the creative, inventive ways kids respond to the questions about their clefts. How does a child respond to a tough question? Age, personality, audience, experience are all powerful factors. The most influential factor, though, may be the storehouse-of-responses kids collect from their parents throughout their lives–beginning long before they could answer the questions themselves. That collection is an important resource for information, confidence and a communication style that has the potential to strengthen and prepare a child for positive experiences with others and their questions for many years to come.

No perfect answers. After a prenatal diagnosis of cleft, when parents first experiment with telling close friends and family they are expecting a baby with a facial birth defect, the very first question is often, “What caused it?” Sometimes, there’s a known genetic component–an uncle or grandparent also had a cleft and so the answer might be, “well, clefts tend to run in families,”–but far more often, the answer is, “We don’t know.” For parents, family and friends alike, “we don’t know” isn’t the perfect answer we’d like it to be but still, it’s the answer we’ve got.

Prepare and practice. What about baby’s first adventures to the grocery store or walks around the neighborhood? The first question from a stranger may be, “What’s wrong with her?” or, “What’s wrong with her mouth?” Prepare and practice your response before you need it. Some of us are gifted with easy-going calm no matter the situation; others of us, well, we may find ourselves speechless, or worse, defensive and angry when those first questions come our way. “She was born with a cleft lip; our doctors will repair it when she’s a little older,” is a simple, stick-to-the-facts response and often, a sufficiently satisfying one.

Remember your audience.  The question may come from a family member, a friend or a stranger but the most important audience member? That’s your child! From the first day of life, from the very first question, remember that your child hears, records, and will reference for the rest of his or her life what you say, how you say it, your tone, mood, and expectations. (No pressure!) Ten years from now, twenty years from now, will your responses to questions about the cleft be ones you’ll be proud to hear coming directly from your child?

Kid talk.  As early as possible, encourage your child to engage with those questions himself. This is another tough parenting mission, but one with a huge payoff. Encourage your toddler to, “Tell Mrs. Smith about your lip, what do we call it?” Your two-year old may be able to say, “Cleft lip boo-boo,” or whatever other language you and your family use to describe the cleft. You can jump in from there, helping Mrs. Smith with her question, but the most important mission is accomplished: You’ve helped your child begin her own practice of answering difficult questions. She’ll be a pro, sharing details about surgery and other care, in no time!

Meet-and-greet natural curiosity with natural parent-pride. Humans are curious, it’s our nature. We see something new and we want to understand it. The grocery clerk at the checkout counter, the preschooler at the table near yours at the restaurant, the senior citizen who sits on the pew in front of you at church: They’re all curious and they’ll all have questions about your child’s cleft. Ideally, they’ll ask those questions in the gentlest, kindest, most genuinely curious of ways. Ideally, your response will reflect your mom-and-dad pride in your child. Be patient with curiosity, be generous with your pride; your child will benefit from all!

What are your experiences with questions about your child’s cleft?