Disability Reads: Ariel Henley's "A Face For Picasso" A Revelation For Those in the Facial Difference Community

By Kara Jackman

I waited two years to read this book. 

Two.

I avoided reading this book because I knew how close to home it was going to hit – a cannonball to the solar plexus. It was all going to be all too much, so I had to be ready for it. 

I was as ready as I would ever be this summer, and I am happy to report I enjoyed every bit of the book, “A Face For Picasso,” written by Ariel Henley. 

She spoke directly to the way many of us feel in and out of the hospital. Ariel Henley is a twin. She and her sister, Zan, were born with Crouzon syndrome. Not only did she experience these surgeries, she also had to watch her sister go through them as well. They were part of a large family with three older siblings, and a mother and father that loved and fought for them all along the way. 

This exquisitely written book chronicles Ariel’s life in beautiful prose filled with wit, love, and revelations that were very meaningful to me as a fellow craniofacial-affected person. The book is organized into three sections: Before, Finding My Voice, and Healing. She gets into the surgeries, watching her twin experience surgeries, addressing her time in therapy, school, and as a cheerleader. In between, she talks about art history with regard to Pablo Picasso. Her ability to fold in the research she did on Picasso was seamless, and easy to understand. If you are not an art history buff, be assured you will find this approachable. I certainly learned a lot about the man behind the paintings, and I was not impressed, which is why Henley titles the book “A Face For Picasso.” This framing is a way to talk back to his misogyny and the rules of art that govern beauty such as symmetry.

Ariel deftly named so many things that we all experience, but often are not able to explain. Often we chalk it up to trauma, but never explore the root cause of that trauma. Her descriptions of agency and bodily autonomy are truly where the rubber hits the road. She writes, on page 184 of the book: 

“When you grow up in a hospital, you learn that bodily autonomy is a myth. My body was not my own. It did not belong to me. It belonged to the doctors and nurses who shaped every part of me. It belonged to the hospital personnel and to my parents, who signed waivers, consenting to strangers touching, breaking, molding, the very essence of who I was. This was what I hated the most about surgery. It wasn’t the idea of my body being cut open or the pain I experienced when I woke up. It wasn’t even the terror I knew I’d experience during recovery. It was the oblivion. It was fading off into total nothingness. It was waking up and realizing I had no idea what had been done to me. I didn’t know who saw me, who helped me, who touched me. I was helpless. I had no control over my own body.” 

After reading this paragraph, I gasped, my jaw gaped, and I felt seen. Actually, Ariel saw right through me to my soul. The precipitating event that brought on this bit of introspection by Ariel was trying to figure out where her underwear went after a surgery… it had to be removed for the catheter. Her mother kindly reminded her. This very same thing that had happened to me, and has scarred me to this day. So many of us speak of this experience of having to remove our underwear during surgery and it feeling particularly violating. Only recently, have I been able to reconcile this feeling in my own life. 

Another part that stuck out to me was the positive and negative interactions she had with classmates. Usually this kind of book will focus on the negative interactions, but this book shared the special bond she had with friends at school, even allowing them to come visit her while recovering from surgery.

There was some trepidation in allowing her friends to see her recovering, but once it happened, it deepened their connection. After receiving some water and an ice pack a friend brought Ariel after one of these surgeries, she reflects, “I couldn’t show this side of my life to the kids at school. I couldn’t tell them about what my experiences were really like. That was how I knew Nina and Victoria weren’t like our other friends. They never made Zan and I feel like we were different.” This moment, and others like it, detailed in the book, warm my heart.  

There is so much in this book to unpack, issues of control over one’s body; all the unpredictability of planning surgeries only to have them fail or not happen at all; school, college, and figuring out one's identity as one’s face and body change from year to year. Then, there are the triumphant episodes that family and friends of Zan and Ariel have around homecoming court and cheerleading which gave me great hope for society. I even appreciated when Ariel chirped back to her parents about things she hated about her life and experiences. Though I don’t believe I could ever do that to my parents, I am sure I did.

“A Face for Picasso” has something for everyone. Please pick it up and read it, or listen to sweet Ariel read the audiobook version (Oh my, yes! She also read her words for the audiobook version.) Again impressed is not a strong enough word to describe Ariel. Explore the many layers that she examines, and feel validated by this book, an authentic and relatable read. 

  

Ariel is currently conducting research for her next book. I look forward to it and anything else she plans on writing. I am a fan for life. And I am forever sorry that it took me so very long to pick up this excellent read. Fear and trauma are such tricksters. Thankfully, I seemingly always have the last word in their defeat.

Disability Reads: "Love, Love" by Victoria Chang

By Kara Jackman

I took Victoria Chang’s “Love, Love” on my trip to Annual Retreat in 2022. (Yup, that was last year, and I am just getting around to writing about it this year.) I also brought my Kindle library along with me, too. I don’t know what I was thinking. When would I have time to read? Well, I thought, this was written in verse form, so how long would it take, right? Second, I always like to have a bunch of books around me for comfort when I am away from home. They are like my adult stuffies!

The story is about an Asian-American family told through the perspective of 10-year old Frances Chen. Her sister, Clara, mysteriously begins losing her hair. Her parents focus most of their time on the protagonist's sister, trying to give her vegetables and teas, purchase wigs, and otherwise keep up appearances as Asian Americans living in the midwest United States. This leaves Nancy Drew-loving, and worried, Frances to solve the mystery of why Clara is losing her hair.

Frances has her challenges, too. At school she is bullied, her friend stops spending time with her. She feels very different and very much "the other" in her mostly white elementary school. While times are tough for Frances, she does have one saving grace: tennis. She loves to play, and is quite good. A friend’s coach recognizes her talent, and she begins practicing at the bubble. Soon she must tell her parents about her interest in the game, after being offered an opportunity to play in a local tournament.

While all this is happening, Frances takes lunch in the school library, and begins reading with her friend about hair. They learn all about it, the science of it, what it is made of, and how it grows. At home, she keeps tabs on her sister, Clara, and eventually ventures into her room to learn, discover, and solve the mystery of Clara’s hair loss.

If you don’t want me to spoil the ending of the book, please stop reading here. Frances discovers that Clara has trichotillomania, by reading her diary. Trichotillomania, or hair-pulling falls under the umbrella of obsessive compulsive mental disorders. I, and many like me, some of whom are in our community, struggle with the compulsion to pull our hair. I have had many one-on-one conversations about my lifelong struggle around this issue. I feel this book is a great way to begin some dialogue about it among people in our community.

Frances handles learning about Clara’s trichotillomania in such a beautiful way, without words, but signing letters to her across the table, proving and demonstrating a way Clara can constructively use her body for connection, and to be seen. Frances signs “I K-N-O-W/ Y-O-U/ P-U-L-L O-U-T/ Y-O-U-R/ H-A-I-R.” Clara responds by telling her not to tell her parents. The last page of the book sums everything up nicely. “I still don’t know why Clara/pulls her hair out/I still don’t know/if she will tell my parents/but somehow/I know/it’s not/my secret to/tell/somehow I know that/not even the snow can/bruise us anymore/because somehow/we know/we are each no longer/fully alone.”

In this book, there is so much suffering in silence, and extreme feelings of isolation despite living and being around people. We in the CCA community know how this feels when we are in our home communities, or at school among our so-called peers. Yet, when we are together at Retreat, let’s say, we experience what it feels like to be seen for who we truly are inside, and to know we will never be alone again. This is the message of this beautiful book by poet Victoria Chang. Perhaps, there is no coincidence in me packing this book for retreat last year after all.

Chang grew up in the midwest, too. Though she admits not being very good at tennis, she feels her experiences growing up were similar to Frances. As she writes in her dedication, “To all the bullied kids in the world: I see you. To all the kids who suffer: I see you.” Chang wrote a tremendously beautiful story in verse, about mental illness, family, and belonging. I am so grateful to have read it. I encourage you to do the same.

Many thanks to my colleague at Boston University, Megan Sullivan, for suggesting this book through a syllabus her sister created for a class at University of New Hampshire. You both are truly "my people!"

Alt Text Is Accessibility For All

By Kara Jackman

Accessibility is inclusion. CCA Kids strives to be as inclusive as possible and one of the ways we are working on meeting everyone’s needs is by providing alt-text in our social media and blog posts. Alt text describes images displayed on websites, social media, and other devices.. This allows people who are low vision, or blind to see what is depicted in the photo. There are screen readers, machines, or software and apps, that do just this for our friends in the CCA community with different vision-related issues. This way we can invite more people to view content on our website, social media posts, and other publications, thus widening the circle of acceptance.

Image Credit: @disability_visibility on Instagram

Let’s explore what alt text is. “Alt text (alternative text) describes the appearance or function of an image on a page.” For our purposes of accessibility, it is important that all people receive the information we post on our website, or share on social media. People that are low vision or blind may have a screen reader app or device that will use the alt-text to describe the image and its context on the website or a social media post. A list of screen readers, applications that read scan for text that describes an image, can be found on this website.

Sometimes this text is embedded in the image metadata, or the information about the picture that you do not see that sits behind the webpage you are reviewing.. In other instances, the text may be part of the social media caption so everyone can enjoy what you posted.

Here is an example of what this looks like on social media. In this example, the writer created an “image description” in the caption to make it accessible to all.

On websites, the text will be hidden in the code, as you see in this example for a bag of Doritos. The highlighted portion reads “<img alt> Doritos Tortilla Chips, Nacho Cheese, 1.75-Ounce Large single serve bags (pack of 64).” This text would be picked up by a screen reader and read aloud to the shopper so they know to purchase the correct item. Additionally, if the original image does not load, then the text would appear in place of the Doritos, describing it.

Image Credit: https://www.pngkit.com/view/u2q8w7o0e6w7y3u2_doritos-tortilla-chips-next-to-html-code-alt/

In our community, we strive to level the playing field for all. Alt text is just one way we practice the principles of universal design, which is defined as “the design of buildings, products or environments to make them accessible to people, regardless of age, disability or other factors. (Wikipedia).” CCA practices inclusion in so many different ways, including choosing Annual Retreat locations and office spaces with curb cuts, elevators, and accessible hotel rooms, In between Retreats, we connect with one another online. Describing our images, and writing in fonts that are easy to read, provides everyone a seat at our CCA family table.

References

Harvard University Digital Accessibility 

Screen Readers

Universal Design

Talking to a Person with Differences Can Make You Kinder

Today on the blog we have a video of a research study conducted as a part of the BBC Documentary by Adam Pearson, "The Ugly Face of Disability Hate Crime." This excellent documentary follows Adam as he seeks to uncover some justice regarding disability hate crime (including cyberbullying) and also as he tests out his theory that engaging with people with facial differences can in fact change how individuals will act towards people with differences in the future.



This documentary is certainly timely, because as students head back to school, it's important to help them reach out to their classmates and educators about their conditions. By proactively scheduling introductions and presentations, students develop the skills of assertiveness, positive non-verbal communication, and self-confidence. Learning to talk about one's self can be difficult for anyone, and can be even more so with a facial difference. However, using tools and resources like our Wonder classroom kits, students can proactively set the tone for a school year built on kindness, empathy, and respect.

Please contact us if you'd like help setting up a presentation at your school.

Erica Perry Takes Control: Short, Awesome Documentary

The CCA Bloggers think you will love this short, inspiring documentary about Erica Perry, a New Zealand woman born with an extremely rare condition called Miller’s Syndrome, which affects her physical appearance from top to toe. Having undergone 40 corrective surgeries, Erica's wondering: what’s the alternative? She takes us on a journey, discovering different ways to gain self-confidence and be happy in the skin she’s in.

The full 27-minute documentary is available on AttitudeLive: http://attitudelive.com/documentary/erica-takes-control

Here's a clip.

Media Monday: Difference and Fashion

Pro Infirmis: Because who is perfect? Get closer.

It's no secret that I love fashion blogs, so when I came across this Pro Infirimis project, I couldn't get it off of my mind and I had to share it with you! I am thrilled at the prospect of seeing non-traditional models in fashion because as I've said elsewhere on the blog, "I like different." Different is beautiful and this project celebrates differences. Projects like this one remind me that we are changing the world and how the world sees disability and difference.

Check it out:


From the Huffington Post article:

Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer."

The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows today, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.

"Seeing it there for real is quite a shock," said one of the video participants. And that's exactly the point. Raising awareness of those with disabilities, specifically in the realm of fashion, is a conversation that's already begun with groups such as Models of Diversity, which aims to bring models of all shapes, sizes and colors to the fashion runways and media.

Outspoken individuals like Kelly Knox, the winner of BBC's "Britain's Missing Top Model," and Angela Rockwood, who returned to her modeling career with a Nordstrom campaign after becoming a C4-5 quadriplegic, have also made their voices known.

Some stores have made concerted efforts to include body diversity, including those with disabilities, in their ads. Nordstrom has been doing so since 1991, while British department store Debenhams made headlines earlier this year with a Spring 2013 look book that featured a woman who was an amputee.

It's still an uphill battle to make the mannequins in our store windows reflect the shoppers passing by. But "Because Who Is Perfect? Get Closer" and the Swiss stores who participated prove that it can definitely be done.

---
--Erica

Educational Advocacy Series: Part Three

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 Three in our October Series. 
Please also check out Part One and Part Two.

Parent Participation in the Special Education Process

Paula, Scott, Aaron and President Clinton at the signing
of IDEA on June 4, 1997. Scott played "For He's A Jolly
Good Fellow" on his Liberator communication device
for the President Clinton.

Bob and I felt that we had to learn special education acronyms, procedures, and laws to adequately advocate for Scott. We recommend that strategy for all parents of children who receive special education services. Once you are informed, you will be more confident when you are preparing for and attending case conference meetings. You will most likely know more about the laws than some of the school employees in attendance. Special education department administrators typically know and understand the laws and appreciate when parents do also.

This entry has two parts. If you don’t care to read about Special Education Process Rights, skip them and go to Suggestions for a Smoother Case Conference Committee Meeting.

Special Education Process Rights

The Individuals with Disability Education Act (IDEA) gives parents and their children with a disability the following rights for participation in the educational process:

• A Free Appropriate Public Education for Your Child. Free means at no cost to you. Appropriate means meeting your child’s unique educational needs.
• Have your child educated in the least restrictive environment possible. Every effort should be made to develop an educational program that provides your child with the services and supports needed in order to be taught alongside children who do not have disabilities.  Start with the position that your child belongs in ‘regular’ classes, and only allow special “pull-out” classes if the school and you agree to it.
• Request an evaluation at any time you think your child needs special education services or related services. The request should be written and dated. Keep a copy for your records. Give it to one of the following school employees: teachers, school counselors, school psychologists, school social workers, building principals or other administrators.
• Be notified in the language you normally use whenever the school wants to: 1. Evaluate your child, 2. Change your child's educational placement, or 3. Refuse your request for an evaluation or a change in placement.
• Informed Consent. Informed consent means you understand and agree in writing to the evaluation and educational program decisions for your child. Your consent is voluntary and may be withdrawn at any time.
• Obtain an independent evaluation if you disagree with the school's evaluation.
• Request a reevaluation if you think your child's present educational placement is no longer appropriate.
• Have your child tested in the language they know best.
• Review all of your child's school records. Give school personnel a dated, written request. Keep a copy for your records. You may also request copies of any part of the records, but the school might charge you a reasonable fee for the copies.
• Request that information in your child’s records be changed if you feel that it is inaccurate, misleading or violates the privacy or other rights of your child.  Give the dated, written request to school personnel. Keep a copy for your records.
• Request a hearing if the school refuses your request to change or remove the questionable information in your child's records. If you’d rather, you may file a complaint with your state’s Division of Special Education.
• Be fully informed by the school of all rights that are provided to you under the law.  Ask school personnel to tell you of your rights.
• Participate in the development of your child's individualized education program (IEP), or individualized family service plan (IFSP) if in preschool. The school must make every possible effort to notify you of the IEP or IFSP meeting and then arrange it at a time and place that is convenient for you and school personnel.
• Participate in all IEP or IFSP team decisions, including placement.
• Request an IEP or IFSP meeting at any time during the school year.  It is advisable for you to make this request in writing and keep a copy for your records.
• Be kept informed about your child's progress at least as often as parents of children who do not have disabilities.
• File a complaint with your state’s Division of Special Education if the school has violated federal or state laws that apply to special education programs.
• Voluntary mediation or a due process hearing to resolve differences with the school that cannot be resolved through case conference committee meetings. Put your request in writing, date it, and keep a copy.

Suggestions for a Smoother

Case Conference Committee Meeting

• Ask for all anticipated proposals or changes to be shared with you before the conference. You don’t want surprises in the conference clouding your thinking. Receiving the information at least 3 days in advance is recommended.

• Ask for your child’s progress-to-date information and goal achievements to be provided in advance (at least 3 days in advance is recommended). Reviewing this information before the conference will help it go faster. It also gives you the opportunity to get your questions / comments ready.

• Ask for all test results to be shared and explained in advance (at least 3 days before the conference). This will help the conference go faster. You don’t want surprises in the conference. This will give you the opportunity to gather facts and be better prepared for decision making in the conference.

• Prepare a Parent Report about your child to present at the conference. My next blog entry will be devoted to preparing the Parent Report. Give a copy to the conference coordinator for distribution to conference participants in advance of the conference. Since you’re asking for all school personnel’s reports in advance, give them the same courtesy.

• Go into the conference knowing that you are an equal partner with school personnel. Share in decision-making. Remember that everyone in the conference is supposed to be on the same side—that of the child!

• Before the conference, give school personnel a written list of topics you want to discuss so they can be put on the agenda.

• If you have obtained an independent educational evaluation on your child, share the results with school personnel in advance.

• Invite a friend, family member or advocate who is knowledgeable about your child to attend the conference with you.

• At the beginning of the conference, ask how much time has been set aside for it.

• If you have concerns during the conference, state them. Expect school personnel to take them seriously.

• Ask questions about anything you don’t understand. You will be respected for speaking up.

• Take notes. This will help you stay focused on what’s being said. They will come in handy when the written IEP is received.

• If you like something, express your appreciation.

• Do not sign the written IEP until it is completed and you’ve had the opportunity to read through it, compare it to your notes, and ensure that it accurately contains all information that you expected it to contain based on decisions made at the conference.

Resources: For training opportunities, contact the Parent Training and Information Center in your state.  This link to the Wrightslaw Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC) has a listing by state. http://www.yellowpagesforkids.com/help/ptis.htm

Stay tuned for Paula's next post!

Wrightslaw (www.wrightslaw.com) provides accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

 --Paula

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

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!

Life & Loss

Tragedy struck our family last weekend when our 14-year old nephew unexpectedly passed away. It is the worst fear that all of us have as parents. There is no greater loss.

Tommy had autism, and, like many of our own kids, was often referred to as “special.” Although that word is the socially acceptable term for describing kids with various handicaps, I have never liked it and seldom use it. Kids like Tommy and my son, Peter, are indeed special, but I don’t feel that my other son and nieces/nephews are any less special. I would be equally devastated to lose any of them. Rather than special, I like to think of children like Peter and Tommy as difference makers. They leave an intense lasting impression, they deeply change the people who love and care for them, and they possess insight that is much wiser than their age.

Of the many amazing stories that were shared about Tommy this week, there is one that personally resonated with me. Tommy’s Grandpa would often take him out for breakfast at McDonald’s. They would always order exactly the same thing, although at various locations since they live in different states. On one visit, the cashier entered their order before they got up to the counter. Tommy’s Grandpa said, “We were here six months ago, and you still remember?” Of course she remembered. This did not surprise me.

I often have the same experience with Peter. People may first notice his facial difference, but they usually walk away remembering his sharp humor, his thoughtfulness, or his insightful remarks. This may be a result of his challenging life experiences, but I think there is more to it. I see compassion and enlightenment that comes from a place deep within. It’s the essence of who Peter is and how he lives his life. It is the soul of someone truly touched by a higher power. As his parent, I am fortunate to see this gift in action all the time. This week, for example, Peter removed his prosthetic ear and told me that he didn’t want to wear it for the funeral. He said, “I think Cousin Tommy would want me to be just who I am.” What a profound statement from someone so young. I was speechless.

I hate that Peter has to have so many surgeries, I hate that he has to endure stares in public, and I sometimes even hate how his needs have complicated my own life. We sometimes talk about how unfair all these things are, and how Peter wishes he wasn’t born with Goldenhar Syndrome. The overwhelming positive outcome from all his issues, though, is the far reaching influence he has had on so many lives. Families like ours, who face so many emotional and scary challenges with our children, have a different appreciation of life. Although we all cope individually, we are connected on a very deep level. I don’t believe that connection and relationship ever ends, even when the worst happens and we have to look toward a different future. Anyone who interacted with Tommy, even that cashier at McDonald’s, was changed for the better.

“Be the change you want to see in the world.” Mahatma Gandhi

Taking a Break

I don’t have much to report about my ongoing battle with the school system. I wrote a letter summarizing our meeting from last week and included requests for specific information on the budget as well as answers to several questions. I am still waiting for a response. In the meantime, I’ve made phone calls to attorneys and advocacy groups and am learning what my options are. Rest assured I will be taking action soon!

Navigating the legal and political bureaucracy when facing problems like this is extremely time consuming. You have to take breaks and step away from the situation to clear your head. Fighting an organization as large as the school district is a long process, and, just like in a marathon, you have to pace yourself. From my experience, organizations, when faced with challenges from those they serve, strategically hide behind their many layers and levels of management. They hope we will eventually become frustrated enough to give up our cause. Private insurance companies, State Medicaid offices serving the disabled, and school systems like I am now dealing with all employ these tactics.

As parents of special needs children, we have many extra issues to manage. Taking an occasional break from advocating for a cause is not giving up. It’s a necessary means of balancing your life, completing other projects, and enjoying your family. Nevertheless, it’s hard for me to watch too many days go by without a resolution for Peter. The FM system he used in school for the last three years is collecting dust somewhere in an office simply because he is enrolled in a private school. It’s saddens me that we have such a limited ability to govern where our tax money is spent for education. To me, “equitable services” as outlined in IDEA law means that private, public, and home-schooled students should all have equal access to assistive technology as needed. To our local and intermediate school districts, it simply means a balanced budget, even if it comes at the expense of kids with special needs. How sad and pathetic is that!

What's for Dinner?

I have to confess that Peter's eating disability is a source of constant struggle in our house. He has had a feeding tube since birth, and we have suffered through countless hours of therapy in an attempt to get him eating by mouth. Personally, I have thrown in the towel, and stopped trying to get him to eat "normally." My husband, however, still has enough spark left to keep pushing Peter to try new foods and consume something that might resemble a meal. I'm grateful for that because I just don't have the energy to try anymore. The fact is, neither one of us really knows how capable he is of chewing and swallowing.

When Peter was a baby we endured the feeding pump on continuous feeds both throughout the day and all night long. We changed sheets at 2:00 in the morning whenever the bags leaked formula all over his bed. We woke up to alarms going off due to kinked tubing. And, we mourned the fact that we never got to give our baby a bottle. If you think about it, feeding is a tremendous bonding time between parent and child. It requires you to take a time out, sit down, and enjoy each other's company. That special time is not supposed to include technical hardware and syringes!

As Peter got older, I began to worry about how he would eat at school. The summer before kindergarten, I totally gave up on therapy and went to my own approach. I was sick of playing with food and clapping over the fact that he finally touched a spoonful of applesauce to his lips. I also hope to never again finger paint with pudding!!! I did make some progress after about a week of dragging Peter to the table kicking and screaming and making him take a few bites of whatever pureed recipe I mixed up. Honestly though, we were all miserable.

When Peter went to school all day for the first time, he drank a high-calorie Carnation Instant Breakfast shake for lunch (made with whole milk and cream). Fast forward 3-4 years and his diet is virtually the same. He drinks 3-4 of those shakes every day and has a few other special dishes. He will take bites of other foods but usually not enough for what I would count as daily calories. We also tube feed him a can of Pediasure at bedtime. Yes, I've heard of "food jags," but they obviously don't apply to Peter. I keep asking him if he is tired of drinking the same thing every day. Maybe try a new flavor? A different texture? Anything??????? The answer is always, "No thank you."

It's obvious that Peter takes no pleasure in eating. I sometimes wonder if his sense of taste and smell maybe never developed properly. I know he has those senses based on his reactions, but I just don't see how they can be very refined. I continue to be surprised at how little help the medical community is when it comes to an eating disorder of this nature. None of his 8-10 specialists really seem to care much about how he eats so long as he gains weight and shows up respectably on the growth chart. Whenever I bring up the issue, I receive a prescription for occupational therapy. I'm aware of a few facilities that specialize in treatment for transitioning from a feeding tube, but they usually require intense daily therapy and a great deal of time away from home. A commitment I'm not willing to make right now.

Here is what I believe. I believe that if Peter ever decides that he wants to eat like a typical kid, then he will. If he needs help at that time and shows me that he will work at it, I promise to be right there beside him finger painting with pudding on a paper plate!

P.S. I have to quickly share another ear story. They just never seem to end! Peter lead some new students in his karate class this week and, as expected, they were all very curious about his missing ear. One of the kids finally asked, "Did you fall out of your crib when you were a baby?" Peter, who couldn't stop laughing, simply said, "No. I was born this way."

School's Out... Now What?!

As every school-year ends, I try to find a balance between getting Peter’s medical needs met and still allowing time for unstructured fun. Sadly, our craniofacial kids are often subjected to an excess of appointments during summer break. These are the easiest months to travel for that second opinion, schedule the elective surgery or test, and intensify therapy sessions or tutoring before school starts again.

On the “necessary” side, I've committed Peter to weekly tutoring for math and a handwriting therapy class. Fortunately, we don’t have to deal with any surgeries this summer, but he will be getting braces. I also try to take care of several clinic visits so that he doesn't miss too much school. That usually means lots of appointments in July and August to see his 8-10 specialists.

On the “fun” side this year is the CCA retreat, karate classes, the library’s summer reading program (he’s a bookworm!), Bible School, and trips to visit out-of-state family. Altogether that is way more scheduled time than Peter or I would like. I know what Peter craves most of all is the freedom and relaxation of simply being home with no school projects or homework deadlines. Who doesn't, right?

What seems pronounced to me during the summer is how Peter’s disabilities have become more socially isolating for him. He has a difficult time with the heat, so outside activities like sports and day camps are not enjoyable. Peter used to love the pool, but his friends have moved beyond the shallow waters and are now diving at the deep end. The most he can do is float around on the surface due to his still open trach stoma. Peter is also restricted from playing contact sports because of a single-pelvic kidney and c-spine instabilities. Eating, which is also very social, is a problem as well (he's had a g-tube since birth). Separately, these restrictions don’t seem like such a big deal, but they are extremely frustrating. In many ways, they are defining his social interaction, his level of independence, his self-confidence, and his overall personality.

Peter has become an expert at escaping into a fantasy world, usually of Star Wars or Harry Potter, and it often consumes his entire attention-- to the point where it is almost obsessive. I think this has a lot to do with his physical limitations as well as the stress and anxiety he has from being so medically complex. I do love his active imagination, but most of his friends don’t want to live in a constant fantasy world of pretend anymore. They are in organized sports and activities that Peter either can’t or won’t participate in. Right now, Peter’s main avenues for social interaction are video games and movies. These activities level the playing field and enable him to connect with friends in a relaxed and fun way.

I’m sure the dilemma of a “necessary” vs. “fun” summer schedule will continue well into Peter’s teen years. The best I can do is to find a balance that doesn't overwhelm him or the rest of our family. Schedules are not what summer should be about. It should be about creating memories and spending extra time together. All I know for sure is that Peter and I will be waiting in line when the new Harry Potter movie comes out in July!

Happy Summer!!!