#FaceEqualityWeek2019 Rewind: How to Handle Awkward Questions About Your Baby

By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 

(Editor's Note: We chose to run this piece by Amy Mendillo during #FaceEquality2019 Week because parenting during these infant years can be difficult when you first bring your newborn baby out into the world. While the world asks questions, you, as parents, must provide answers and advocate for your child. Amy shows us how its done, through anecdotes shared with her from other parents with children born with cleft lip and palate.)

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.

As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.

Ask the Therapist: Feeling Different About A Baby With A Difference

By Jackie A. Castro, MFT

Jackie A. Castro is a licensed Marriage Family Therapist with a private practice in Granda Hills, California www.therapywithcare.com

• Have you just received the news that somethings not 'quite right' with your baby?

• Are you feeling frightened, overwhelmed or numb?

• Are friends and family inundating you with advice that feels useless or undermining?

No matter what the diagnosis, it's normal to have a reaction. Sometimes emotions get the best of us. When these emotions are managing us, rather than us managing our emotions, life becomes chaotic and overwhelming. Emotional reasoning can impair our ability to function with ourselves, our children and our partners.

Managing Your Emotions and Strengthening Your Ability To Think Clearly

Trauma/PTSD You will never forget the moment when you first heard the diagnosis: "Something is wrong with your baby." You might remember your body trembling, your heart racing or gasping for breath. Even recalling that moment today may evoke flashbacks, anxiety or vivid dreams. That's because trauma is stored in the body. Our brains become hyper vigilant in preparing for more bad news. Hearing this new information is definitely traumatic and subsequently you may now be experiencing Post Traumatic Stress Syndrome. Parents need to remember that the worst is probably over. You now have to deal with managing what's on your plates.

Grief Most people associate the feeling of grief with death and divorce. Did you know that there are over forty identified grief experiences? According to the Grief Recovery Model, loss is defined as a "change in a familiar pattern of behavior." Women get pregnant with the assumption that in nine months they will give birth to a healthy, happy baby with ten fingers, ten toes, etc. Then you hear otherwise and your heart sinks. It's normal to feel disappointed, short changed and angry. Because this goes against expectations, this sense of loss usually leads to anger and eventually sadness. These feelings are normal and natural.

Depression, Shame and Guilt Along with sadness comes blame, self doubt and guilt. You wonder what you did wrong or how the diagnosis could have been prevented. While it's perfectly reasonable to look for answers, it's simply unhelpful to blame yourself. Whatever happened, happened. It is no one's fault.

As human beings, we are always looking for a reason. That's why parents blame themselves in order to make sense out of an event that doesn't make sense. Some will

blame the doctor. Most likely, the medical team did the best they could. In truth, some things seem to be out of our control. That's a hard life lesson for all of us but it's true.

Right now, acceptance is what everyone needs. Acceptance from family members, friends and especially ourselves. No one needs to shame you. You did your best and will continue to do your best. Remind yourself that it's okay.

Anxiety Anxiety is fear about a future that hasn't happened yet. The thinking is based on 'worse case' scenarios. Many people feel that worry is beneficial. They believe it helps them find a solution. However, there is a difference between worry and problem solving. Worry is synonymous with obsessional thinking while problem solving is based on rational fact. Sometimes the truth is that there are no concrete answers in the moment. Parents find that hard to accept and anxiety becomes pervasive. This anxiety can effect your ability to function both emotionally and physically.

Marriage Conflicts The birth of a baby with a difference can often make or break your marriage. When you first heard the news, there's hope that the baby might bring you closer together. Your major desire was to form an indestructible team with your partner and work together. You vowed to be each other's cheerleader, support system and confidante. This was well intentioned until you found yourselves losing patience with each other.

The reality is that babies with a difference create stress. Stress is something that some people can deal with and other people can't. When two people are sharing a common stress, it often becomes too overwhelming. The couple reacts by withdrawing from each other or arguing. There are disagreements over medical care, parenting styles and financial issues. The fighting escalates and before you know it, you are now having a troubled marriage in addition to a special needs child.

Seeking Help Many parents try hard to put up a strong front. They don't want to burden family or friends. It's okay to get help. It's actually a good decision.

If friends and family are not available, there are many other resources. There are all kinds of groups for new moms. There are also organizations that deal with families of children Special Needs. Forming bonds with other parents is a good idea. Reaching out will not only help you, but it will also help someone else.

Professional Help While many feel that they don't need therapy and they can manage on on their own, counseling is a great resource when emotions are running amok. Feelings related to trauma and grief can escalate. So can your anxiety and depression. This is bad for you and your baby.

Therapy is a place that provides unconditional positive regard and acceptance. It's a

place you can talk, vent and share your deepest, darkest thoughts. Saying things out loud helps you to listen and tune into yourself. You'll have an opportunity to sort out the confusion and pain you are feeling.

These days, therapy often provides more than just talk. Many therapists, such as myself, offer tools. The tools I generally utilize are comprised of Cognitive Behavioral Therapy along with Mindfulness.

Cognitive Behavioral Therapy is based on the tenant that our feelings are triggered by our thoughts. Worry is often characterized by 'what if' thinking and predicting a future that doesn't exist. Depression is connected to thinking about the past. Cognitive Behavioral Therapy helps you to understand distorted thinking and teaches you how to think rationally.

Mindfulness educates about how to live in the here and now. Mindfulness tools include meditation, deep breathing and progressive muscle relaxation. There's also an effective technique called Grounding which helps to bring us into the moment.

While many parents think they have to attend therapy with their partner, it's not always the case. That's because you might need some individual work in order to figure out your own feelings and needs. Sometimes one therapist will work with you and your partner individually as well as together.

In Summary Be gentle with yourself! The diagnosis was overwhelming and surprising. Like any unexpected situation we need to give ourselves a moment. Take a breath. Educate yourself. Reach out to others. Most of all be good to yourself. Remember you and your baby are worth it.

© 2018 Jackie A. Castro, MFT

Family Spotlight: P.J.'s Birth Story & Advice For New Parents

By Crystal Kouri

Surprise, your baby was born with Treacher Collins Syndrome! Your delivery was not the beautiful experience that you had expected. You may have had a lot of warning signs during the pregnancy that may have been overlooked and you feel let down by your doctors. You probably labored for days in the delivery room -- probably much longer than what is considered to be normal. And then all hell broke loose. You are not alone.

Here was my experience and the raw feelings I felt  after giving birth to my beautiful baby boy, P.J, born with Treacher Collins Syndrome.

(L-R) Jono Lancaster, P.J., Paul Reynafarje, father,
and Crystal Kouri-Reynafarje, P.J.'s Mom 

Finally, after days of contractions, I was induced due to severe polyhydramnios. Four days later, P.J. finally came out. His dad and I were both crying with joy and relief. They put him up on my chest for the first time. The doctors and nurses did a double take and immediately took him back. Being our first baby, we were so confused as to why they would take him back?

We had not even seen him yet. What was wrong? They kept him in the room for a few minutes as dozens of people rushed in and out. And then everyone rushed out of that room with him.
My husband followed them down the hall. He came back a few minutes later repeating their words,“Treacher Collins.”

Treacher Collins? I don’t know what that means??? As I’m still crying on the delivery table with my lifeless legs in the stirrups, my husband Googled Treacher Collins. We quickly learned that the internet is a very scary place. We were bombarded with all kinds of images of the most severe cases. Scary, considering we had not really seen our baby yet.

I lost it! Lost it on a level I have never experienced before. Complete hysteria set in. I remember apologizing to my husband thinking that I had done something wrong. Was I too old? Did I work too much? I did my fair share of complaining throughout the pregnancy. Was the universe, or God, punishing me for taking my pregnancy for granted?

My husband invited my parents and sister into the room to calm me down. They knew when the baby was not  there that something was wrong, but the did not understand why I was so upset. Everyone was silent as my husband read them the definition of Treacher Collins as written in the  Wikipedia entry he found on the syndrome. My family just looked confused as he read a bunch of complicated medical terms.

I finally said, “show them.” I’ll never forget the looks on their faces. Shocked, silent, awkward and scared. Is this what I will see for the rest of my life when people look at my son?
At this point everyone was in tears and trying to console me as I hysterically rattled off all of my concerns for his future - acceptance, friends and most of all, bullying. Medical needs can be treated and overcome, but emotional scars are so much more severe. Why was my child being punished? Why would the universe, or God, allow this child to be born into such cruel, emotional circumstances and medical hardships?

I completely shut down. I didn’t want to talk to anyone. Locked myself away and cried for two days straight without any food or sleep.  I had publicly posted about going to be induced on my social media accounts. I shut it all down! - I deleted everything and hoped people would not notice.  

When my husband finally talked me into going to see the baby, he didn’t look so bad. Cosmetically, he is a mild case, which was relieving, but he still has the classic medical problems that Treacher Collins babies have to endure (breathing, eating, and hearing). The bigger issue was that I wasn’t feeling a bond with him.

Over time, P.J.and I developed a bond. I love him so much. Energized by my personal experience, I want to give back to the craniofacial community. On Sunday, April 22nd, we hosted two charitable performances at Le Petit Cirque to help raise funds for P.J.’s hearing aids and the Love Me Love My Face Foundation. The two performances were a success. Still, I feel called to do more. I want to help other new parents develop a bond with their children born with facial differences. Here are my tips on how to handle the birth of your baby that also happens to have Treacher Collins.  

First, do not let anyone make you feel guilty for not feeling a bond right away. My husband was kind enough to give me the time I needed before I went to visit P.J. in the hospital. He did not pressure me to go with him. Everyone processes feelings in their own time. I encourage you to keep trying to go visit. One time, out of nowhere, and for no reason, it just happens. Instantaneously, you will fall in love with your baby. You will still be scared as ever, but in love! This child is now your child and you were meant to protect and nurture him or her.

Secondly, if you are not ready to talk publicly about the your child’s facial difference... DON’T! Have someone tell others about the circumstances of your situation, that you need space and privacy during this time. You can announce the birth of your baby when you are ready!

Crystal Kouri-Reynafarje and P.J. at the
Le Petit Cirque charitable
event 

Thirdly, you did nothing wrong! In most cases, Treacher Collins and other facial differences happen because rare, genetic mutations occur at the time of conception. It is no one's fault.

Finally, and perhaps most importantly, CONGRATULATIONS on your new baby. Not many people will say that to you at the beginning of this journey. In fact, I’ll say it again.... CONGRATULATIONS!

Siblings in a Special Needs Family

Today's guest post is from Amy K. Williams. Amy K. Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques.

Siblings in a Special Needs Family

Relationships in families can be complicated, especially when siblings are involved. They are our first friends, confidants, partners in crime, and even our first enemies. Growing up in the same household allows siblings a unique chance to bond and forge relationships that are sometimes tricky to understand.

After all the fighting and backseat squabbles, siblings are bonded by shared life experiences that can unite people in very strong ways. Even though we might pick on our brothers and sisters, it’s nice knowing that they will always be there or have our back. Siblings relationships are precious and dicey, because occasionally real life interferes causing a few rough patches along the road. This is especially true in our families where one of the children has special needs.

The Needs Of Siblings of Kids With Special Needs

The reality of raising a child with special needs is that parents are often required to put in a little more one-on-one time or give attention towards meeting that child’s needs. Siblings often pick up on this and often develop feelings of resentment if they perceive a brother or sister is receiving all our attention. These very real emotions of sibling rivalry can be challenging for any parent, but can be especially taxing in a special needs family.

The brothers and sisters of a child who has special needs often are supportive and willing to help their sibling. However, there are times, just like in any other family, where jealousy might rear its ugly head. Siblings may surprise us and react in unpredictable ways if they are feeling one of the kids are receiving a lot of our attention and time.

“The siblings aren’t given as much attention, and they may not understand why,” said Dr. Jill Emanuele, a clinical psychologist at the Child Mind Institute. ‘Why are Mom and Dad always worrying about Peter? Why aren’t they paying attention to me? What did I do?’ ”

Underlying competition for our attention can easily cause a rift between siblings and even resentment to develop toward parents. This can occur even in normally understanding and protective siblings- after all, it is a common occurrence among brothers and sisters. In the same breath, it is important to realize that a side effect of these feelings is that children tend to act up, hide their emotions, and even deliberately disobey parents.

Support Siblings With The Following Ideas:

Remember that children are still children. Sibling conflicts are natural parts of growing up and the age of child can impact how they process the situation. Younger kids typically react in outbursts and have difficulty understanding why their sibling receives extra attention. As they age, new worries develop. Now a child might begin to notice bullying at school, worry about the future of their sibling with special needs, and if the condition could possibly be inherited by their own offspring.

Openly discuss a child’s special needs and the needs of other family members. Talking will empower family members and help kids understand the situation. Children often will seek any form of attention if they are feeling neglected- positive or negative. Allowing everyone a voice will keep the lines of communication open to benefit everyone. Remember, knowledge is powerful.

Find a support group for siblings in a special needs family. Whether it is online or at the local community center you are offering the youngest family members a safe place to share their feelings with peers who can relate to the situation and experience. Check out the Sibling Support Project or turn to the Internet for additional resources for siblings.

Help a sibling find an activity of their own to become involved in. Allow children to choose a cause or sport they are passionate about. If they decide to try soccer or 4-H, these organizations allow children to develop their own identity and give a boost to their self-esteem.

Allow siblings to tackle chores and duties around the home. By allowing siblings to help the family will ultimately create a solid unit and provide ample opportunities for positive feedback on a regular basis.

Schedule dates with all the children. Caring for a child with special needs does require extra work and taking the time to schedule quality time is necessary to show all children they are valued. Even if you need to find a sitter or hire help, taking the time to bond individually with our kids is definitely worth the extra hassle.

What ways do you try to keep sibling rivalry at bay?