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Ask The Therapist: Getting That Guilt Under Control

By Jackie A. Castro, MFT

Did you know that more often than not, people who are compassionate to others, are downright mean to themselves? They are forgiving of others, but extremely harsh on themselves.

They are overly committed, work extremely hard, and always strive to do their best. When things go well, they hardly take notice. Yet, when something goes wrong, they are the first person to blame themselves. They then berate, condemn, and speak to themselves in a harsh voice. They go on and on about what they  'should have' done, or not done. Oftentimes, the self-deprecating rant goes on for days only to accomplish nothing. Sound familiar? Do you know someone like that? Maybe yourself?

I'm describing something I call 'self guilt,' as opposed to real guilt like the guilt felt after committing a crime or being hurtful to another person. Basically, self guilt is a feeling we 'sentence' ourselves to for something that's difficult to understand. Most often, we see this feeling arise in people who have experienced trauma.

Examples:

• You are  in a car accident. Before you even step out of the car, you are taking blame.
• You were abused as a child or adult, and blame yourself for provoking the abuser.
• You are a mother and berate yourself whenever something wrong happens to your child.

Or perhaps, you are a parent of a child who was born with a facial difference. You constantly find fault with yourself. You obsess about what you could have done differently even though. intellectually you know the truth. Emotionally, you blame yourself and live in a constant state of guilt.

The Origin of Guilt

Guilt is a way to explain that which we cannot understand. It's almost always about putting the blame on ourselves, when we are not at fault. No one is.  This is especially true for parents who have a child born with a facial difference. Whatever the doctor told you about the genetic origins of the craniofacial condition is often dismissed. Putting blame on yourself somehow feels more logical, even though in truth, it's false.

The idea of self-blame and self-guilt comes from the very human desire for explanations. Parents feel very, very responsible for the well being of their children. Once again, when things are right, we feel good, but when things are wrong, we tend to beat ourselves up.

In Therapy

As a therapist, I routinely see people who are highly anxious or very depressed as a result of having a child born with varying medical conditions, mental health, or behavioral issues. While we assume that the guilt, anxiety, and depression are a direct result of the event, in this case the birth of a child, it's actually not true. The emotions actually are born of our own ingrained, personal thoughts and beliefs. We have carried these emotions, beliefs, and thoughts with us for most of our lives. Most of these thoughts manifest themselves on an unconscious level. In therapy, I work with parents to untangle these beliefs, thoughts, and emotions.

Parents universally come to therapy with feelings of guilt. They start off by telling me what they think they did wrong during their pregnancy and how they are currently feeling badly about their child's health, happiness, and social issues. They speak in terms of absolutes. I often hear phrases like "It's all my fault," or "My child is suffering because of me."

These parents go on to tell me that they are constantly feeling anxious and upset. They worry and second guess their decisions about medical procedures. They imagine that their child is taking a turn for the worse. They are concerned about bills and the high cost of medical procedures. Eventually, they begin to doubt their abilities and feel inadequate for not being good enough. They feel both overwhelmed and upset. It's very common for nervous parents to wind up as highly, depressed parents. They have problems coping with life and end up feeling hopeless and sad.

How To Combat Guilt

Feelings happen not from the event, but how we think about the event. So while it was shocking to hear the diagnosis, and natural that we would experience a myriad of emotions, we must understand that these thoughts and feelings are falsely created in our own minds. I say this, not to blame you, but to inform you that sometimes our own mind can be our worst enemy. Most of us have no idea that our thoughts and feelings are connected.

Cognitive Behavior Therapy (CBT)

Here's the good news. You can learn how to manage the thoughts  that trigger bad feelings. You can learn how to identify how these thoughts, or cognitions, are simply not true.  The goal is not to think positively. Rather, the goal is to think rationally, or in a more balanced fashion.

I often utilize a type of therapy that is known as Cognitive Behavior Therapy (CBT). CBT is considered to be one of the most cutting-edge, effective ways to manage feelings that get in the way of living happy, productive lives. CBT helps you look at your thoughts, identify the distortions, and reframe them in order to see a more realistic truth.

For example, if your child is bullied, we assume you will have a reaction. What do you think it will be? Your first thoughts will probably be connected to anger, sadness, or fear. Believe it or not, the feelings that occur are not so much about the event, but your thoughts about the event. See if you can identify what feeling would occur with each thought:

"It's not fair that my child has to go through this."

"This is all my fault. I'm the one who created this child and they are suffering because of me."

"This is just the beginning. What if this bullying gets worse and worse?"

I'm sure you know the answers, but just in case, let me clue you in. Whenever we have thoughts about things not being fair, you are going to feel angry. When you blame yourself, you are feeling guilty. And, when you worry about the future, you are guaranteed to feel anxious.

Upsetting feelings are almost always a byproduct of a thought. And nearly all of these upsetting thoughts have some kind of cognitive distortion.

Rethink Your Guilt With CBT

When we think in terms of self blame, we will feel guilt. The feeling of guilt is something that was most likely learned in the past, instilled in us while growing up. CBT will help you to unlearn this pattern of thinking, replacing it with more helpful ways of thinking.

Going back to the example of a child getting bullied, we can learn more helpful ways of thinking. I refer to this as neutral thinking. Neutral thinking allows us to observe and accept a situation for what it is. If necessary, we then can think calmly about any actions that are necessary to take. We learn how to behave rationally as opposed to emotionally.

Dialing It Back

You might believe that experiencing guilt can be helpful, and you have a point. Guilt is an emotion that basically keeps us from doing wrong and many would say it helps keep a moral compass. However, if you make a list of how guilt helps, versus how it hurts, chances are good that you will find it hurts more than it helps. That's where I tell my clients to 'dial it back'. Instead of feeling guilt at one hundred percent, maybe you'd like to feel it at thirty percent or less.

Reframing Your Thoughts

Guilty thoughts center around disappointment. You feel as if you didn't live up to the high, oftentimes, unrealistic standards you impose on yourself. These thoughts generally have a 'should' statement attached. 'I should have done this, or 'If only I'd done that.' How are these thoughts helping you right now? They are generally thoughts that relate to the past. Can you go back in time? Do you have a time machine? My guess is that you don't.

Be Kind

Instead of beating yourself up, it's far more productive to speak kindly to yourself. Talk to yourself the way you would talk to a good friend who was going through the same thing that you are. You would not judge. I bet you would remind that friend of all the good things they've done. Ultimately, you'd give the friend a big hug.

Sometimes we need to give ourselves that hug. We need to remind ourselves that we are doing the best we can despite a boat load of challenges. Most of you were ill prepared to raise a child with a facial difference or medical challenges. You literally had to take a crash course in both childrearing and the complicated diagnosis, while keeping up with the daily responsibilities at work and at home. It's a lot!

Give Yourself A Break

When you find yourself speaking in absolutes or predicting a future that you can't foresee, stop. Take a deep breath and fight that negative thought with the truth. You'll find that almost all of our absolute thinking contains many shades of grey. Our faulty thinking does not provide the answers we are seeking.

Be gentle with yourself, focus on real truths, like the good you do rather than thoughts that scold or admonish you. Guilt brings us down while compassion brings us up. Be as good to yourself as you are to others. Be aware and conscious of your thoughts.

In Summary

Guilt is a a self-imposed emotion. It is based on our own moral standard of what we believe to be right and wrong. Generally speaking, it's based on the idea that we have to be perfect in order to be good. The feeling is almost always factually incorrect and unhelpful.

Self guilt is always felt by people who are inherently good.  We have good intentions and want to do our very best. The problem is that the feelings often work against us. We end up feeling disproportionately bad about ourselves. That's simply not fair.

The good news is that we can learn how to mange these emotions so that we can think more neutrally. Neutral thinking will allow us to see things clearly and make good, sound decisions based on fact, not feeling.

Learn how to be good to yourself. Remind yourself of your own worth and value. Instead of focusing on what you did wrong, tell yourself what you did right. Stay in the moment. Learn self love and acceptance so that you can share these positive emotions with your family.

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

www.therapywithcare.com

© 2019 Jackie A. Castro, MFT

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

The Best Friends Bash

We're pretty sure this is the best thing you'll see all day.

We love CHOP & PennVet's "Best Friends Bash," a fun party which brings together therapy dogs, including many with physical differences, and kids with facial differences (including many of our CCAKids!). We could go on about how joyful and inspiring the result is, but really you have to see this video...


The Best Friends Bash from Carl Weiss on Vimeo.

Check it out in print and photos at PennCurrent.

Three cheers for everyone who put this amazing event together and all of our friends who participated! 

Media Monday: Lizzie Velasquez

Today's Media Monday post comes from Lizzie Velasquez, a motivational speaker and person with physical differences. I love Lizzie's story: She made her haters her motivators. Sure, anyone can say it but Lizzie lives it and proved it to be a successful philosophy.

I hope you'll watch her TEDx talk and feel inspired to take charge of your life. Her poise is truly skillful. I'm taking notes!



Lizzie also gave a talk aimed at children and teens.



Thank you Lizzie, for your commitment to positivity and progress. Kudos to you!

-Erica

Friday Remix: The Face to Face Project

The Face to Face Project from Carl Weiss on Vimeo.

Face to Face is the first program of its kind in the United States. Studio Incamminati artists, in partnership with the Craniofacial Program at The Children’s Hospital of Philadelphia painted intimate portraits of four patients with craniofacial conditions to help them see themselves in a different light. The portraits, which premiered November 1, 2013 at The Children’s Hospital of Philadelphia, will be permanently displayed at the hospital.

The location videography was produced and edited by Carl Weiss of Weiss Communications. With the exception of a small set of stock video clips (eye opening, NYC street scenes, couples looking at a smart phone and in a restaurant, etc.) all content was captured on SONY NEX-VG20 cameras with Rokinon SONY E-mount cine lenses and was edited in Final Cut Pro X.

Educational Advocacy Series: Part Two

CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Two in our October Series. You can read Part One here.

Scott’s Journey, Part Two: "Get it in Writing!"

In response to comments to last week’s entry about Scott’s first five school years: Scott’s placement in a segregated setting is what was considered “best practice” at that time. It’s refreshing to hear that people are surprised. We hope that the educational best practice of inclusion is now taken for granted.

Moving to the second part of Scott’s Journey. . .Scott was bussed across Evansville for five years to the class for children with multiple disabilities in a public school. His teacher understood that we wanted Scott educated with children in a general education (inclusive) setting. She found a first grade teacher who let Scott and an assistant come to her class for reading class. Other teachers let them attend reading, art, and music classes during subsequent years in that school--the result of “agreements.” Scott learned and made educational progress in that setting.

Scott's 1st day at Highland Elementary, our neighborhood
school. August 29, 1994.

During those early school years, Bob and I interviewed adults with disabilities throughout the country about their education, and we asked how they believed Scott should be educated. Everyone recommended an inclusive setting. These interviews contributed to our mission for Scott’s case conference committee that year and from that time forward: general education class in his neighborhood school with appropriate aids and supports.          

When it was time for Scott’s brother, Aaron, to enter kindergarten, we wanted both boys educated in the same school—our neighborhood school. Another parent (of twin girls with CP) and I met with our neighborhood school principal sharing our mission and further stating that we believed special education services could be provided in any school. He agreed and said he would welcome Scott and the twins.

Bob and I discovered that students with multiple disabilities were being successfully educated in inclusive settings in other school districts. We talked with their parents to see what attributed to those successes. We spent hours documenting Scott’s strengths and needs in all areas of his life. We wrote a ‘parent report’ to be presented at the conference. (A future blog entry will be solely dedicated to the parent report.) We wrote out the general education teacher’s role, the teacher of record’s (TOR) role, the resource room teacher’s role, and the necessary requirements of an aide to provide educational support and personal care to Scott.

Once word got out about our mission for Scott, a few other parents of children with disabilities called saying that’s what they wanted, too. So, at spring conferences in 1994, families worked with our school corporation to move five children with disabilities from segregated classrooms into inclusive classrooms. Scott was the only one classified as “multiply disabled.” Even though Scott was 10, we decided that he should be in a third grade class since he was ready for the third grade reading curriculum. More importantly, we’d been advised that 8-year-olds would be more accepting (compared to 10 year-old fifth graders) to a student with multiple disabilities.

Eleven hours of conferences with 19 people sharing and receiving information about Scott achieved the mission that he would transfer to his neighborhood school, be educated in a general education classroom, receive pull-out resource supports, and have the services of a dedicated classroom aide. We celebrated. . .until the written IEP was received. It did not include these three main points!

Scott and his classroom assistant, Karen Maxey.

(We’d previously learned the hard way that Scott’s rights weren't protected if “agreements” weren't written in the IEP. Years earlier we had an unwritten agreement that Scott would have increased speech services. He received those services; but, during that year the TOR took maternity leave, the speech therapist took medical leave, and the principal resigned. Bob and I were the only ones left who’d been in on the original agreement. The new TOR, speech therapist, and principal were obligated to provide the lesser services that were written. We had to conference again to get the increased services written in the IEP. . .a delay which could have been prevented if only it had been written when agreed upon!)

So, we wrote a letter to the Case Conference Coordinator explaining that we would sign the IEP only after the above three points of our mission were included. She apologized and explained that this was new to the school corporation. She corrected the IEP. We signed the IEP, and we never looked back.

Worth noting: I advise parents to NEVER EVER sign a blank IEP. One wouldn't sign a blank check, and one surely should NOT sign a blank IEP! Always read through the completed document and ensure that everything that was agreed to in the meeting is included in the IEP. If the IEP needs correcting before being signed, document the issues in an email or letter to the school and wait for the document to be corrected before signing it.

Our neighborhood elementary school principal hired an assistant. She worked with Scott from third grade until he exited the Evansville Vanderburgh School Corporation 10 years later. She was with him in all classes, at elementary band concerts, at middle/high school choir concerts, and at high school play rehearsals and performances. She went on field trips and work experiences. She was crucial to Scott’s success as were the attitudes of the many administrators, teachers, staff, and therapists who were a part of Scott’s journey.

High School Graduation! May 2004.

Scott remained in a general education setting until he graduated in 2004.

We now know there are benefits to inclusion that we did not anticipate. Some of Scott’s classmates have shared that Scott impacted their lives: some chose medically related careers because of him; some are teachers who are not afraid to have a differently-abled child in their class; some are parents of children with special needs who have said that they were better prepared for their own journey because of Scott; some are in jobs where they have opportunities to hire workers and are willing to select people with disabilities because of their classroom memories Scott.

Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person / one family can and does make a difference.

--Paula

Friday Remix: Helping Kids Deal with Death

This Friday we have repost from BackupCare.org about how to help children deal with death. This is a tough subject to write about but also an important discussion.

Thank you to Kevin for sending us the link.

-----

Originally published at http://www.backupcare.org/blog/helping-your-kids-deal-with-the-death-of-a-family-member/.

Helping Your Kids Deal With the Death of a Family Member

Losing a family member is hard at any age; however, children often lack the life experience that adults rely on for developing the coping skills to get them through this difficult time. When a child loses a loved one, he can experience a variety of emotions that may range from confusion to anger. Children who lose a loved one after a prolonged illness may even feel guilty about having a sense of relief. Throughout the grieving process, children will frequently turn to the adults around them to seek answers regarding how to cope with losing their loved one. Whether you are a parent, teacher or caregiver, here is what you need to know about helping kids deal with the death of a family member.

Have an Honest Discussion

Breaking the news of a loss to a child is one of the most challenging conversations that parents can have. However, this initial conversation is what will pave the way for a child’s reaction. To initiate the discussion regarding a loss, plan for a time when you can sit down and talk to your child uninterrupted. Allow your child to react however he may need to without expressing judgment. After hearing about the death of a loved one, children may react with anger, fear or confusion. Very young children may even deny that the death has occurred. Finish up your first discussion by letting your child know that you are available to answer any questions that may arise later or just to offer a hug.

Use Concrete Language

During every discussion with your child, it is important to avoid using one of the many euphemisms people have for death (e.g., “passed away”). This is especially true for young children, who may take it literally if you say that their loved one is “resting.” If your child has questions about how the death occurred, be honest, but be sure to use language that is geared toward your child’s age and development.

Recognize the Signs of Grief

Understanding the different signs of grief will enable you to help your child through the grieving process. It is important to note that children will react differently depending upon their age and stage of development. For example, older children may feel guilty that they did not do something to prevent the death. This can occur even when there was nothing they could do to help their loved one. According to Mental Health America, young children may also revert to outgrown behaviors, such as sucking their thumb or wetting the bed. While many of these reactions are normal, it is important to keep a watchful eye for signs that grieving is becoming severe.

Coping With Prolonged Grief

Because of the wide range of emotions children can experience during the grieving process, it can be hard to know if a child is experiencing deeper trauma. However, Dr. Bruce Perry offers a few things parents should look for regarding severe grief reactions. For example, Perry explains that severe grief reactions may be unnaturally prolonged if they are still occurring six months after the death. Although children may still feel occasional bouts of sadness, they should be on their way to handling their emotions in a positive manner at this point. Any child who has grief symptoms that are prolonged or that interfere with his daily functioning may benefit from talking to a professional mental health counselor who is experienced in working with grieving children.

Be Available for Questions

As a child begins to accept the loss, she may still come to you with frequent questions. If you are also experiencing profound feelings of grief, it may be hard to talk about the loss, but your child depends upon you for support. Therefore, try not to avoid bringing up the death, and encourage your child to talk about it any time she feels sad. If you recognize feelings of guilt in your child, it is important to reinforce the concept that death cannot be prevented and that moving on with life does not mean that the loved one’s death did not matter. Death can be scary for children, so don’t shy them away from asking questions or expressing their fears. Help them see that death, while sad, is a part of life.

Surround Your Child with Support

When a child is learning how to deal with the death of a family member, he can benefit from having many different resources for finding ways to cope with grief. Let your child know that other family members are available to help him through this time. School counselors, teachers and other familiar adults will also be willing to provide support to your child once they are aware of the family member’s death. There are also support groups available where your child can meet other children who are also struggling with the loss of a loved one.

Helping your kids deal with the death of a family member begins the moment you have the initial conversation. By talking to your child openly and honestly, you will be paving the way toward better coping skills that will help your child throughout the grieving process. As your child begins to accept the loss, be sure to set up a memorial ritual that you can use to remember your loved one while providing your child with a healthy outlet for his grief. The goal isn’t to extinguish those feelings of sadness, but to help your child learn to understand them and incorporate them into a healthy view of life.

Becoming Body Positive

I know this will shock no one, but I love blogs.

(Before reading on, I wanted to disclose that the links in this post may be PG-13.  Additionally, this post does not represent the views of CCA, only me. Okay, you're free to continue.)

One of my favorite types of blogs recently is "body positive" blogs, also called fat acceptance blogs. If you're wondering what the heck a body positive blog is, let me suggest you check out "Pudgy & Peachy" or "The Militant Baker." 

I started following these blogs for the fashion because these women (and men) have superb style and are excellent photographers. The more posts I read, though, the more I loved the message. These bloggers are fighting the shame and stigma that comes from being overweight by wearing what they want, when they want. People who are larger or overweight are constantly marginalized, misrepresented, and even mistrusted. People assume they are all lazy or unhealthy, which is certainly not the case (obsv, right?!). And these bloggers aren't sweet, meek activists. They are aggressive in their approach and refuse to let critics haters define their bodies. Their insistence on bodily sovereignty and commitment to loving themselves in the face of their loudest critics is inspiring. Their willingness to be so open slowly, but surely, chips away at the rigid definition of beauty in our dominant culture. 

But the best part about body positive blogs for me is that they share the experience of being judged on looks alone. How many times has someone assumed you were incapable or unintelligent because of your looks (or your wavering self-esteem)? Too many, I'm sure. How many times has someone commented on your ability to do or not do something based on their assumption of your physical abilities? Probably, more than you'd like. But like body positive activists, let's fight the culture that says looking different - whether it is weight, a facial difference, or a disability - isn't beautiful, sexy, and worthy-of-super-self-love.

you wouldn't tell a flower

that it is too oddly shaped 

to be given to someone you love.

you wouldn't tell the ocean that 

its waves are too curvy to

kiss the shoreline.

and you wouldn't tell the moon 

that it is too round to illuminate

even the darkest of nights.

so why would you tell 

someone that they are too

big to be beautiful?

n.d.

--Erica

The Things We Take for Granted

Those of us who were born with all of our senses in tact think nothing of how they enable us to explore and engage in the world around us.  Like most things, we simply take them for granted.  Take away even one portion of those amazing gifts, and I’m pretty sure it would consume most of us with concern and even fear.  Because Peter has had unilateral hearing his entire life, he knows nothing different.  He has never heard in “stereo”, and he has never been able to localize sound.  Since he was five, Peter has worn a prosthetic ear that is very realistic.  Consequently, people (including myself sometimes) often forget that he is completely deaf on his left side.  Sit on his left side in a crowded restaurant, however, and you will quickly realize how difficult it is for him to communicate in a noisy environment.

Peter had ear tubes placed many times when he was a baby/toddler, and he has fortunately been able to avoid chronic ear infections.  There is only one previous time I remember him having an ear infection that concerned us to the point of taking him to the ER on a Sunday.  It really is frightening how much his hearing deteriorates with an infection, and, like I said, I’m thankful this has been a rare occurrence. 

Last Friday night while I was packing to return home from vacation, Peter awoke in extreme distress.  He couldn’t hear very well out of his “good” ear and was hysterical with fear that he was going deaf.  The terror on his face was heart breaking!  Once I was able to get him calmed down, I suggested that maybe he had some water in his ear from splashing in the pool or taking a shower before bed.  He was not experiencing any pain from the ear, but I could tell he was terrified about waking up unable to hear.  

The next morning his hearing seemed about the same, and he appeared much calmer.  Peter used his headphones all day in the car, and I assumed he was hearing well enough to enjoy the videos.  He was not outwardly distressed, but I now understand that he was in a constant state of worry.  By late afternoon, he did break down in the car and starting crying about his fear of going deaf.  We were not due to get home until later that evening, but I really wanted to ease his anxiety in any way that I could.  The thought of waiting to see his pediatrician on Monday didn't seem like a good option.  So after spending 14 hours in the car, Peter and I arrived home only to switch vehicles and head to the closest urgent care clinic.  

Turns out that Peter did have a slight ear infection as well as some wax buildup.  I felt such a huge sense of relief after taking him to the clinic.  I could clearly see the stress draining from his face once the doctor told him that his hearing was going to be fine.

Witnessing the terror Peter felt over the prospect of going deaf made me think about how much stress he must always be feeling.  I often use humor to help Peter cope in social situations, but the reality is that he thinks about his differences and how they impact his quality of life much more than I ever realized.  In addition to his hearing loss Peter was trached and tube-fed for many years which also interrupted his senses of taste and smell.  His constant need for medical interventions from birth further impacted his sense of touch (sensory system).  I can’t even grasp the thought of overcoming such sensory dysfunction, and yet I have watched Peter spend countless hours in therapy working through such difficulties.  I don’t believe therapy will ever replace what Peter has never had nor will it erase what was taken away due to his repeated trauma in early life.  As his parent, I do feel a responsibility to acknowledge how hard he works to accomplish tasks that are more easily achieved by his peers. 

Typical of Peter, he doesn’t hesitate to remind any of us about his disabilities, especially if there is potential humor involved.  Last week while on vacation, Peter says to his younger brother, “How come I hear better with one ear than you do with two?!”  And, when asked by the urgent care doctor if his hearing in one or both ears was bad, Peter responded in all seriousness, “Well, I only have the one.”  He then looked at me with that mischievous smile I will never tire of seeing.  That’s my Pete-E-Pie!

Giving back...

Something that has been on my mind lately is how much I've benefitted as a result of “giving back” since Peter was born. When we are faced with life-altering challenges, those trials can be like a fork in the road. We can grow, learn, and become better people, or we can wallow in self-pity and become hopeless and depressing to be around. I’ve spent time in both places, but I eventually chose to take the more positive path.

Volunteering my time and skills is a huge blessing in my life. The professionals I have learned from, the parents I have helped, and the many friends I have made are just a few of the benefits I’ve received through volunteering. If you are looking for ideas, here are some activities I’ve been fortunate enough to participate in...

• Parent Advisory Role – there are many opportunities to participate as a family advisor to hospitals or state legislative groups for children with special needs.
• Family Faculty Programs – many hospitals are now inviting parents to speak to staff about their experiences. I have done this and have found it to be very rewarding.
• Writing – sharing your story and experiences via a personal or professional blog, submission to a newsletter like the one CCA has, or submitting to a magazine.
• Online Support Groups – there are many Yahoo! Groups you can become involved with. CCA moderates several groups to help craniofacial families stay in touch and share information. I’ve been involved with several groups for many years (Goldenhar, BAHA, Microtia/Atresia, Tube-Fed Kids). It is so easy to share a simple tip or advice with other parents via online groups. Social networking sites like Facebook and Twitter have also become easy venues to stay in touch and share information.
• Fundraising – maybe you want to spread awareness within your community by organizing a fundraiser for CCA or your children’s hospital.
• Education – speaking at your child’s school helps to spread awareness and acceptance for all children with disabilities. CCA has information about speaking at schools if you need some direction to get started. For me, speaking to Peter’s peers was an amazing and rewarding experience. I highly recommend it!

Maybe take some time as this year draws to a close to think of ways you might give back. Sharing your time, skills, or experiences is a wonderful gift to offer as well as a great example for your kids.

Happy Thanksgiving!