An Enchanting Children’s Book About Hearing Loss

This enchanting book explains the golden rules for speaking to someone with hearing loss. A great book for classrooms!

Recently, I met with Sonya’s Teacher of the Deaf at a coffee shop near her school. We talked about ways to encourage self advocacy in the classroom. She took out this book from her bag and told me that she would love to read it to Sonya’s class for her next session.

In the story, a little boy named Freddie meets a fairy who has hearing loss. He is delighted to learn she will grant him every wish he has, but he soon realizes that because she can’t hear well, his wishes often come out wrong.

My favorite page is one I would like to print out and frame. When Freddie becomes frustrated that his wishes are not coming true, the Fairy Queen appears. She tells Freddie that before he wishes again, there are three rules he must learn: “Rule One: you mustn’t mumble. Rule Two: don’t turn away. The fairy needs to see your lips to read the words you say. Rule Three: don’t cover up your mouth. She can’t see through your hand! Obey these three gold rules, and then I’m sure she’ll understand.”

It’s a great lesson in kindness, embracing difference and in empathy — all without being overly sentimental or preachy.

Sonya’s teachers plans to use the book to help all of the children in Sonya’s class be more mindful about how they are speaking to one another, as it benefits everyone to communicate effectively.

I’ll be sure to report back following the book reading to let you know how it goes.

xx

Have You Considered Teletherapy For Speech and Language?

We no longer live in NYC, but we still access amazing speech pathologists via teletherapy! Would you consider it?

One of the major drawbacks to moving to London is the fact that speech services for kids with hearing loss is significantly less than what we enjoyed in New York City. For kids like Sonya who have cochlear implants and are oral auditory (as opposed to using sign language), options seem limited. As Sonya is high functioning, she was told she did not qualify for any speech services through NHS.

For the past ten months, Sonya has continued to work with her NYC-based speech therapists via teletherapy. Once a week, Sonya has a video conference with her speech therapist, for 45 minutes to an hour. Despite an ocean’s distance, Sonya and her therapists in real time:

  • Do a sound check in which the speech therapist says non-sensical sounds or silly words and Sonya is to repeat them (typically we have her take off one processor and do each ear, then both ears);
  • Play listening games that involve following multiple directions; and remembering sequences of events to help improve her auditory memory;
  • Listen to a story and then retell the story in her own words;
  • As we like to limit screen time, our speech therapist has me print-out work to do during the week, rather than rely solely on computer games. Sonya and the speech therapist will do this work over VC as well – with the speech therapist giving tricky placement directions (e.g. “place the sun on the top right of the picture under the cloud”).
  • Discuss news each week and offer support and suggestions.
Despite living across the pond, Sonya still accesses her NYC-based speech and language therapists via teletherapy

Of course, teletherapy is not a perfect solution. For one, it’s expensive. We pay $130 per session. Further, video-conferencing technology, for all its benefit, just isn’t as good as in-person speech therapy. Sonya struggles hearing certain sounds over the computer (so I will repeat them, to ensure it is just the computer speaker sound and not her ears that are impacting her hearing). Also, technology has glitches. Computer games sometimes freeze, or screen sharing doesn’t work as well as we would like.

Sonya is listening to her speech therapist’s tricky directions when pasting cut-outs on a sheet of paper.

Despite some frustrations, overall, I feel teletherapy has been a good option for us at this time. We have moved countries with a very different system, but I do not feel that Sonya’s speech has derailed as a result. Further, Sonya loves her weekly 45-minute sessions, and I do too! It’s lovely to stay connected to her beloved therapists and has offered us a sense of stability during a rather chaotic time. Moving is always stressful, but having people who can be there (even if on screen) can make all the difference.

For those interested in accessing the specialists at CHC through teletherapy, check out the program overview. I am happy to answer any additional questions as well!

When CI Batteries Fail

When Sonya’s cochlear implant batteries failed, I realized we need to do more to help her advocate for herself.

At the end of each school day, it is British custom for the teacher to escort each student to the doorway and to shake their hand. Today, instead of releasing Sonya to me so that she can enjoy her afternoon snack, her teacher gestured me closer.

“I think something may be wrong with the radio,” she said. “It happened during ballet.” Sonya looked up at me, her eyes wide with fear.

In these situations, I am great at acting calm. “Put your oxogen mask on first before helping others,” is a mantra I love. “Okay, I’ll take a look at the FM this afternoon,” I told her (FM = radio in British).

As we walked home Sonya grabbed my arm and started to cry. I was taken aback by her response. She was trying to tell me something, but was so upset she choked on her tears. “Mama, I can’t hear anything!” She said in between sobs. I’ll never forget the fear in her eyes at that moment.

I removed one CI from her ear and twisted off the rechargeable battery. These batteries have a limited shelf life. They typically last a few years depending on how frequently they are charged. Moving to a new country, having a baby, it was a lot, and I blame myself for not being more proactive to ensure her batteries weren’t getting too old. Frankly, I couldn’t even remember the last time I had them replaced, but there must have been a little juice left since I was able to restart the processor by twisting the battery back on. Just enough time to explain to Sonya that it would be okay.

Suddenly, a little girl from Sonya’s class came running down the sidewalk to us.

“Sonya! Sonya!” she cried. Her cheeks flushed as she explained to me what had happened that day. “Sonya was crying in ballet and she couldn’t hear!” Then, turning to Sonya, she said, “Don’t worry Sonya!” The sweet gesture of this little girl was beyond. Sonya (and I) tried to hold it together but we were both very moved by her friend’s concern. At home, I replaced the processors with a back-up pair of batteries and for the time being, normalcy returned.

Thank goodness for good friends ❤

NHS to the Rescue

The next morning, I went to the Royal National Ear Nose and Throat Hospital, where I was immediately given a new pair of batteries. The NHS is not an easy system to maneuver, and it’s not perfect, but I am beyond grateful for it! In the United States, I would have had to contact Cochlear USA for new batteries. I would be charged $250 per battery and they would likely overnight it. Here, I am given new batteries immediately and at no cost. Further, I was given an entire box of disposable batteries for free, which should last us two months should the rechargeable batteries fail again.

Takeaways

Clearly, Sonya’s teachers needed more education. At pick up, I discussed with Sonya’s head teacher that it was the battery, not the FM that failed. I showed her how to tell if the CI was working by looking at the light on top of the processor. “Green means good and yellow means not connected. No light means the processor is off.” Of course, we had gone through this earlier in the year, but clearly a refresher was necessary. We now keep an extra pair of batteries in the classroom should this happen again. At pick up every day I ask if anything came up hearing-wise that I should know about.

This experience also underscores how critical it is for Sonya to learn self advocacy skills. For her to be able to inform a teacher that her CI isn’t working, and to trouble shoot the technology herself is vital. This is not an easy task. Especially, given that we are in a community where resources for cochlear implants are limited and there are no other kids with hearing loss at Sonya’s school. I certainly miss our Group Therapy sessions at CHC.

That said, we can still help Sonya get there. I am working with Sonya’s teacher of the deaf (ToD) to identify ways to help Sonya fend for herself. Currently, Sonya is to give her FM system to her teacher (not for me to do); but we definitely need to do more.

If you have any tips on how your child learned to advocate for themselves I am all ears!

xx

Missy

Some Big Changes

London calls

For the past six months (since my last post), a lot has happened.

First, I got pregnant! The second round of IVF worked! I am currently 31 weeks and so far everything is going well! As soon as Sonya learned about the baby, she told her teachers that her mommy was making her a baby. 🙂 Every night she talks to the baby and kisses it.

My lack of posting during this time, was partly due to the fact that I had a rough first trimester. I had to give myself progesterone shots in the rear every evening for 13 weeks. Sonya insisted on watching (she is my shadow after all…) and I’m pretty sure she thinks babies come from needles at this point. I don’t know if it was the pregnancy or progesterone (or both), but the morning sickness made it difficult to do very much at all. Thankfully, by my second trimester, everything settled down and I could resume my life.

Just as I was feeling better and my nesting instincts kicked in, we learned that Yan got a new job and we would be moving to London! As you can imagine, this was equally exciting and terrifying. Sonya was already accepted into a great school in NYC, which we were thrilled about. We had her speech therapists, ToD and reading classes in place. She was thriving. Obviously, making a decision to uproot your child at any point is not one anyone takes lightly.

On the other side of the equation was the amazing opportunity. Yan and I both spent quite a bit of time in Europe before we met (I studied in France and he lived in Amsterdam for two years post-college). The notion that we could so easily travel within Europe (and expose Sonya and her new sibling to new cultures, languages, etc.) was thrilling. It was something we had always wanted to do. We know these opportunities are rare.

So, today, I write to you from our new (temporary) home in Kensington, London. We plan to move to a permanent flat in mid-May.

Given the life changes, I think this blog will be somewhat redirected. While Sonya has thrived in speech therapy in New York City, we are learning that services here are not the same. My subsequent posts will be about the obstacles we faced and continue to face as we maneuver a new system, which has its own pros and cons compared to what we were used to.

If anyone reading this is in Central London, do let me know! Would love to hear your experiences raising kids with hearing loss in this new and beautiful city we are so excited to call home.

xx

Missy

 

A Few Highlights From CampedUP

Are your kids having a great camp experience this summer? This year, Sonya returned to CampedUP, a summer program for kids of all ages (and their hearing siblings) who have cochlear implants and hearing aids. Founded by teachers of the deaf, CampedUP ensures that all kids have a great day camp experience in a listener-friendly environment.

Here are some highlights…

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The first week of camp, Sonya enjoyed a hands-on reptile show! A wildlife educator introduced these city campers to all kinds of reptiles including turtles, frogs and even a yellow boa constrictor! I am still in shock that Sonya was so brave to wear this snake as a necklace!!

The next week didn’t disappoint. Sonya was thrilled to learn she would get to play with  two “special guests” that week, who turned out to be none other than Disney Princess Sophia and Prince James! “The real ones, mommy, not pretend!” she told me. The Prince and Princess helped the kids decorate crowns and then they all enjoyed a royal ball!

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decorating crowns

Despite a rainy third week, the CampedUP counselors made sure the kids had plenty to do. Counselors dressed up as clowns and did face painting (in a cute, not scary way) 🙂

The kids played the Pie Face Game, and even made balloon animals. Stephen Wise, where the camp is held, has a great indoor playground where the campers could still burn off steam, despite the rain. When the sun finally came back, the campers spent the afternoons on the rooftop playground where they played water games and climbed the jungle gym.

Marvel

For the last week of Camped UP, founders Dana Selznick and Brittney Prell had one more very special surprise in store. Marvel’s newest superheroes Blue Ear and Saphera visited the campers. These heroes have special hearing powers because of their cochlear implants. Dana told me that when Blue Ear and Saphera told the kids about their special hearing powers, the kids also shared their own powers, including: hearing Santa.

super heroes

The superheroes truly connected with the kids. So amazing 🙂

That night, Sonya transformed into “Super Sonya!” Protector of her toys.

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Above all, Sonya made such incredible friendships this year. We are so thankful for Dana, Brittney and their wonderful team of hearing education specialists and counselors who are creating such a strong Oral Deaf Community in New York City.

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For Sonya’s upcoming birthday, instead of gifts, we ask that friends consider donating to this wonderful camp. Donations will go toward scholarships so that any child can attend CampedUP. Check it out, here:

https://www.gofundme.com/manage/sonya039s-fourth-birthday

A New Community That Exists Between the Hearing and the Deaf

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Recently, an opinion piece in the Washington Post written by Juliet Corwin, a middle schooler (how crazy smart is this kid, by the way…?) raised an interesting issue. Juliet writes that while she was born profoundly deaf, with the help of cochlear implants she can hear and speak. That said, Juliet still regards herself as a deaf person. “I’m still quite different from people who hear naturally,” she writes. Despite this, she feels rejected by the Deaf community. “In the view of many who are integrated into the hearing world through technology, such as hearing aids or cochlear implants, myself included, are regarded as ‘not Deaf enough’ to be part of the community.”

“There is a color between yellow and green that no one can agree on: I think of cochlear implants — hearing but deaf all the same,” she writes.

The line seems to be drawn. Either Juliet can be a part of the hearing/speaking world, or she can be part of the Deaf community. Only two options seem to be available.

While I certainly empathize with Juliet’s situation (and have feared the same fate for Sonya in the past), I can’t help but wonder whether Juliet or her parents had sought out a new and equally wonderful community: the Oral Deaf Community? This is a community of people who are deaf, who use hearing technology to hear. Juliet doesn’t mention it. I wonder if there was a reason why they didn’t or couldn’t access it?

Now, I recognize we are privileged to live in New York City, which is at the forefront of hearing loss research and speech therapy. We are very fortunate to have found the Center for Hearing and Communication, which focuses on teaching children like Sonya, how to hear, listen and speak with technology. At the CHC, Sonya attends group speech therapy sessions once a week, which emphasize language interactions with kids and importantly help Sonya develop friendships with kids who also use technology to hear.

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Sonya at CampedUP

While Sonya attends mainstream preschool; does ballet and yoga with her hearing friends; she also attends attends CampedUP, a summer program for cochlear implant and hearing aid users. CampedUP further cultivates the Oral Deaf Community. It allows children like Sonya a place to socialize with other hearing aid and cochlear implant users of different ages, to gain self advocacy skills and of course to have a wonderful time, it’s summer camp above all!

The Oral Deaf Community is a strong and growing community. It is a community where Sonya can ask questions about and learn to take ownership over her devices. Where Sonya can feel proud of her uniqueness. Above all, this is a community where Sonya can see (and hear) that she is not alone.

Parents: do you have such communities where you live? Do you find them useful? Do your children? I would love to know more (and provide more information to parents who are reading this who aren’t New Yorkers!)

 

 

Check out the Present and Future of Hearing Loss Research

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Recently, Yan and I had the opportunity to visit the Stanford Initiative to Cure Hearing Loss (SICHL). Not only did we get to tour the research facilities, but we sat down with several world-renowned researchers who are on the cutting edge of curing hearing loss.

Basically, SICHL’s goal is to create treatments that repair the damaged inner ear and restore lost hearing, quiet tinnitus and improve balance. Stanford believes that hearing loss can be corrected and avoided. I strongly encourage other parents to follow their research and blog!

In particular, take a look at the following posts. These will help you to understand what the key areas of hearing loss-related research that Stanford is investing in currently, and what their goals are for the next five years:

Grillet Lab: Nicolas Grillet, PhD is focusing on a gene called Loxhd1, which is responsible for a non-syndromic form (i.e. no other symptoms) of hearing loss. His team is using mouse models to study the effects of different mutations in this gene.

Oghalai Lab: John S. Oghalai, MD has been studying how sound vibrates the hair cells within the cochlea, and how the loss of some of the hair cells affects the ability of the rest of the hair cells to work. Dr. Oghalai’s work will help to develop more effective treatments for patients with hearing loss and better hearing aid and cochlear implant programming algorithms. Notably, they have developed a way to image the cochlea in animals in a non-invasive way. They are hoping to do the same for human patients so that we can learn exactly why an individual has hearing loss!

Cheng Lab: Alan Cheng, MD lab has made major discoveries in the areas of cell regeneration. His lab has established one of the first models of mammalian cochlear hair cell regeneration (which before his lab was understood not to regenerate in mammals). His lab studies several models of mammalian hair cell regeneration and also has the ability to determine whether regenerated hair cells function as normal hair cells.

Dr. Cheng’s lab has also focused on ways to prevent certain types of antibiotics known as aminoglycosides from causing hearing loss. They are working to create non-toxic antibiotics in the next five years.

This is just a sample of the areas of research happening at Stanford. You can learn more about their ongoing investigations and goals here.

Do you follow any research you would like me to include here? Please let me know in the comments section!

 

What it’s Like to be a Twenty-Something with CIs

I stumbled across Becca VonLangen’s blog, Hear Our Silence, while searching for hearing loss-related Instagram accounts (she has a great one). Becca (like my daughter) was born profoundly deaf. She relied on hearing aids until she was eight-years-old when she received her first cochlear implant. At 17, she was implanted on the other side. Today, she is 26 years old. I was interested in hearing about how hearing loss has or hasn’t shaped her identity at this stage in her life.

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Does anyone else in your family have hearing loss? How did your parents approach your hearing loss?

No one in my family has hearing loss. I was lucky in the way of having the love and support from my parents and my brother. Importantly, they did not treat me differently. My parents enrolled me in a preschool for the deaf as a toddler, which is where I learned how to talk. When I got my hearing aids, my parents would talk to me about everything, from the weather to putting away dishes. As I got older, my parents gave me more control over my hearing. They allowed me to take ownership over my implants and my classroom needs. They also taught me the importance of self-advocating.

Did you do speech therapy growing up? If so, for how long?

I went to a preschool for the deaf that focused on oral education. At six, I started mainstream kindergarten. Throughout elementary school, I worked with a special education teacher, but I hated being pulled from my classes so I stopped going without permission from anyone. In middle school, I met with an itinerant teacher before school started each day until seventh grade. I should add that I received more intense speech therapy following the activation of each of my cochlear implants. When I was eight-years-old, I worked with a professional speech therapist, and at 17 I worked with my mom (who had experience as a teacher’s assistant at my preschool).

I attended SUNY Oneonta for college, where I graduated with a major in anthropology and a minor in Earth science.

Do you think you hear differently from friends or family? If so, how?

I definitely do. I notice my friends and family can hear different pitches than I can and can pick up sounds from a distance easier. I do have an advantage with my telecoil mode, however! Using it blocks outside noise on the phone, which is great when I am at work. I end up handling the most office phone calls since I can hear people the easiest on the phone.

What was college and dorm-life like for you?

It wasn’t as tricky as I thought it would be. I let everyone on my floor know I was deaf and they helped me out during fire alarms, especially if I was in the shower when an alarm went off (which happened!).

Did you take advantage of any hearing-loss related accommodations while in college? What helped you be successful?

I used a few accommodations in college. The first floor of the dorms were equipped with strobe light fire alarms so I was able to request those rooms for housing. That made moving in and out a lot easier! For certain classes, I took advantage of having a note taker. I used a note taker for a physics class that had a professor with a thick accent; for a literature class where the professor spoke very quickly; and for a history class which was pure lecture – no power point. Reflecting back, I do wish I had utilized them a bit more for certain classes where I struggled, but wouldn’t admit to it.

I also found open communication with my professors to be helpful. I kept in touch with professors throughout the semester and let them know if I felt I I was falling behind. I had a very rough sophomore year and learned how to advocate better my junior year, which helped me so much. I kept in better contact with my professors and in return I felt I knew the material better and my professors were willing to work with me because they knew I was trying.

What kind of work do you do currently?

I work as a veterinary technician in an emergency and referral hospital, mostly focusing on the dentistry and oral surgery department. I started off as a receptionist for that department and now I have been cross-trained as a technician in multiple departments to help out where needed. When in the dentistry department, I perform dental cleanings, radiographs of the mouth, some minor non-invasive procedures and I help the veterinarian with root canals, braces (to correct a painful mouth, not for cosmetic reasons) and even metal crowns for police canines!

Additionally, I help out at Summit Speech School, a preschool for the deaf, that teaches kids how to speak and hear (the same preschool I went to). Parents with young infants often approach me, hoping to know that their child is going to not just be okay with hearing, but also okay socially. I do think that their concerns have some merit. It’s hard to be different in today’s society and being deaf is something different. I have found that as long as you are proud of your hearing loss and don’t let it prevent you from doing what you want, the challenges are like any other kid growing up.

Have you faced any challenges socially?

I noticed social challenges when I went to college. I grew up in North New Jersey with the same friends who all knew how to adjust in social settings with me, but in college I had to train myself how to get around with strangers. Once I established a core group of friends, things got easier. House parties and bars were probably the toughest challenge due to the dark lighting and loud music. I stuck close with the people I went with for the most part. There was a bar in college I went to every time I went out and developed friendships with the bar and bouncer staff, so I felt more comfortable in that environment.

I am sure people did treat me differently more often than I realize, but I try to focus on the people that treat me the same. There are trends of what people do when they start to treat me differently. Sometimes people over exaggerate their lip movements, which actually makes it harder to understand. I’ve had people say “never mind” when I ask them to repeat themselves, which hurts. I deal with it by letting people know that what they are doing doesn’t help. I find that calling people out helps them to not only help me, but also furthers their awareness. Most people don’t realize what they are doing and apologize.

It’s clear from your blog and Instagram that you love to be active. Can you talk a bit about how you handle sports with CIs?

I grew up playing soccer in a travel league. At that time, I noticed I played best on the side closest to the coach, since I could hear him better there. I learned how to play using both of my feet instead of favoring one side like most players, which gave me an advantage. I also did ballet, jazz, hip hop, contemporary and modern dance most of my life (on top of color guard in high school), and I had to wear “huggies” to keep my CIs on my ears. I learned how to style my hair to keep magnets on my head, too (braids work best!)

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What was it like to date with CIs?

Dating was normal for me. I didn’t think hard about relationships because everyone had different experiences and challenges, and my hearing loss was just another factor. My first real boyfriend was during my sophomore year of high school. I remember being shy about watching TV and movies with subtitles, so my mom mentioned it to his mom. The next time I went over, they had closed captions on the family TV. He asked me why I didn’t say something before and I couldn’t come up with a clear answer.

I noticed a pattern with relationships that followed. I would wait to bring up my deafness. I tried to do it in the most natural way possible, but it didn’t really work. For example, I met one boyfriend on vacation and told him I was deaf while we were swimming in the ocean! That’s not the best place to break that type of news!

Since then, I have been sure to be upfront about my deafness. I met my husband in line at Starbucks and my hearing loss came up in that first conversation, which made it easy! My husband is also the most interested in my hearing than anyone else I ever dated. He comes to audiologist appointments with me, he learned ASL and he learned how to care for and troubleshoot my CIs.

Ahhh…that is so romantic! 🙂 Do you sign?

I do not sign on a regular basis. I would like to, and I took classes in college. It is hard since no one around me signs, so I don’t get much opportunity to practice. My husband and I are learning together. He even surprised me during my wedding ceremony by signing our vows!

Okay. Love him! So why did you decide to start your blog, hearoursilence.weebly.com?

I noticed there was a lack of community with the young adult cochlear implant/hearing aid crowd. There were blogs out there for parents of deaf children and for older adults, but not many for young adults. I started to search social media for other sources and continued to find nothing. That was 2014. Today, the community has grown with other deaf activists my age. You can find them on Instagram, Twitter, etc., but the blogging world still holds a place in my heart.

Thank you, Becca! So grateful to you for sharing your experience! 

Hear in the Big Apple! A Summer Program for Children with Hearing Loss

Are you looking for a summer vacation that is equally enriching as it is fun? CHC and CampedUp have teamed together to create a summer program for kids ages 3-10 with hearing loss in NYC! This is such a cool opportunity for families outside of NYC (and even outside of the US) to take advantage of!

Not only will you and your kids get an opportunity to work with (i.m.h.o.) the best of the best when it comes to speech therapists and hearing education specialists, but if it’s anything like CampedUP, the kids are gonna have a blast, too.

More details below:

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Contact Dana Selznick at dselznick@chchearing.org or +1 917-305-7855 for more details.

A British Accent?

IMG_5456 (1)Maybe I have been watching too much of The Crown, but lately, Sonya’s speech has been a bit… fancier. It could be a mapping issue or an auditory memory issue (meaning she is just used to saying words this way and it is habit), but she tends to speak with a British accent at times.

It’s really quite adorable, and I am sure this has something to do with the fact that she continues to speak this way. We likely encourage it.

When asking Sonya to pick up her toys, she responds, “I just cahn’t!”

We are working with Sonya’s speech therapists to resolve the issue. First we show her a picture of a beach and explain that it is “hot” there. Then we show her a picture of a “hat.” Sonya will most of the time choose the right picture when asked. When we reverse the roles her production becomes better.

It could also have to do with her love for Peppa Pig

I plan to bring this up at her next mapping. Sometimes these little issues resolve themselves overnight.

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Sonya at Buckingham Palace this fall

 

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