For the past couple of months, I have struggled to get Sonya out of bed in the morning. We are perpetually late for school (despite the fact that we live four minutes away). I have been on the lookout for alarm clocks for kids that are hard of hearing, but I was disappointed by the bulky and not kid-friendly options that I found (I don’t know about you, but I wouldn’t want to put a vibrating disk that is attached by wire to an alarm clock under my kid’s pillow…)
Fast forward to today: Sonya wakes up on her own. She eats and leaves the table when it’s time to get dressed. Today we were so early to school the doors hadn’t even opened yet! For any parent out there that struggles to wake up their child (with or without hearing loss), this watch has been a game changer!
The Aupalla Kids Health Activity Tracker is similar to a Fitbit, but smaller and softer rubber for little wrists. You can program the vibrating alarms (we use multiple alarms to get her up and going in the morning) from your phone. The downside to the watch is the face, which in my opinion is a bit hard to tell the time, though Sonya has figured it out. Also, Sonya’s watch shows 24-hour time rather than 12-hour, but I guess we live in Europe now, so I should get used to it 🙂
I love that I can control the alarms from my phone. I have numerous alarms set up with different icons. Sonya can see that it is time to wake up, time to eat, time to get dressed, time to do her reading and even practice piano. It’s not an Apple Watch, but for a five-year-old kid, it’s really a great and inexpensive solution.
Just a cute, fun hack that has really worked, so I thought I’d share!
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 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!
In a month, we will celebrate Sonya’s third birthday! While I can’t believe three years have passed already, I also can’t believe we have only had Sonya for three years in our lives. She has had such a profound impact on who I am.
As Sonya approaches her big day, we are also working on transferring our speech therapy services from Early Intervention (which is state-sponsored) to our local school district. To do so involves a somewhat lengthy process, including:
A referral from Sonya’s EI service coordinator, informing the school district that Sonya was born deaf, has been receiving speech therapy through EI and that she should be considered by the school district for special education services (i.e. speech therapy and in-classroom support);
A psych/ed evaluation, which assesses the child’s physical, mental, behavioral and emotional factors;
A speech and comprehension evaluation, which assesses the child’s current abilities; and
Letters from Sonya’s audiologist and surgeon detailing her hearing loss and the tools she will need to succeed in school (i.e. FM system and receivers).
In the below clip, you can watch excerpts from Sonya’s speech and comprehension evaluation. The entire evaluation was nearly two hours, but this gives you an idea. Also, I was observing behind a one sided mirror – so the quality is a bit grainy.
Once the evaluation is complete, we met with a school administrator who discussed Sonya’s progress and whether she would be granting us the accommodations we requested. Since Sonya will be in preschool five mornings a week this year, we requested a hearing education specialist to be in the classroom with her three times a week; for the school to order an FM system (and receivers that fit on Sonya’s processors) that we can use; reading help once a week; group therapy and individual therapy.
The school board meeting was one I dreaded for a long time. I had heard horror stories from other parents, who said they would resort to tears and refuse to leave the room until the administrator granted an accommodation. I heard of another parent who brings a big black binder with her child’s adorable photo on the cover. Looking extremely organized, she runs the meeting! (It’s actually a phenomenal idea). Thankfully our meeting went very smoothly. That said, we will continue to have them annually until Sonya is out of high school. Chances are, we will face such challenges in our future.
In other news, Sonya has grown so much this summer. I have noticed that when Sonya has a developmental leap, she tends to remove her CIs more frequently. Yesterday, she refused to wear them at speech therapy. It took 30 minutes of prodding before she finally agreed to wear them (the game of hot potato finally coaxed her); and this morning, she threw them off just as we entered NYU’s Cochlear Implant Center for her three month mapping. It’s frustrating to say the least. Sonya speaks loudly without her CIs and tends to hurt herself too. Yesterday she was being crazy and hit her head on the corner of a bench and now sports a small red dot right below her hairline 😦
Something tells me that we are only starting to appreciate the true challenges that await us as parents of a ‘threenager’ 🙂
Sonya is attending CampedUp, a unique camp where kids with hearing loss can socialize, gain self advocacy skills and have an awesome time!
Sonya (bottom right) is with her buddies and counselor Brandi Prell at CampedUp, a summer camp located in Manhattan for Cochlear Implant and Hearing Aid users.
“Thanks, but we don’t do playdates with other deaf kids.”
These very painful words believe it or not came from a mother who, like me, was raising a baby with profound hearing loss. She explained that she didn’t want her child to be held back by other children who couldn’t hear.
Thankfully, we also had Ketty Baalla in our lives. Ketty has been Sonya’s Early Intervention Service Coordinator for almost three years. More than that, she has been a friend who has personal experience raising a child with hearing loss. This past fall, I asked her about summer activities she would recommend for Sonya. Her response?: CampedUp, a day camp for children with hearing loss.
“But shouldn’t we focus on programs with hearing children?” I asked. My fear that this mom was right had made its way in.
Ketty and I spoke on the topic for an hour. Her experience with CampedUp was not limited to her work as a service coordinator for kids with hearing loss. Her own daughter had attended the camp and it had been life changing for them both. “After CampedUp, my daughter had great interest in her devices,” Ketty told me. “At audiologist appointments, it was my daughter – not me – who asked the majority of the questions. She gained a confidence and interest in her devices she didn’t have before. She had taken ownership of her hearing loss!”
I signed Sonya up that afternoon.
For two weeks, Sonya has attended the camp. I can’t say enough positive things about it. Created and operated by Hearing Loss Specialists, CampedUp provides a unique community in which children like Sonya can socialize with other hearing aid and cochlear implant users of different ages, gain self advocacy skills and above all have a wonderful time.
“We recognized the need for kids to have an opportunity to form relationships with other children with hearing loss, outside of a therapy setting,” says Dana Selznick, co-Founder of CampedUp and a Hearing Education Specialist. “We wanted to create an environment where campers can play, create and build a community among their peers starting at a young age. Brittany Prell [CampedUp’s other Co-Founder and Hearing Education Specialist] and I grew up going to camp and our experience helped shape who we are today. We wanted our camp to have the same impact on their lives as it did ours.”
So far, Sonya has enjoyed projects such as marble painting, creating a color changing chameleon, meeting a “real life” princess and a super hero, decorating paper fans with bubble art and making homemade bouncy balls. The highlight was a reptile show!
Note that the reptile guy is wearing an FM around his neck which is synced to all the kids’ devices. “All the kids love seeing that they are not the only one wearing an FM,” Dana says.
Can’t believe this is my kid. Brave girl!
While Sonya attends half days, the camp goes from 9 a.m. to 3 p.m. each day. Kids enjoy a morning snack and an afternoon “fun with foods” activity (yesterday they churned butter!). A hot meal is provided during lunchtime. Each afternoon kids play water games on the roof of Stephen Wise synagogue and this week (among other activities) will meet children’s book author (and speech pathologist) Fara Augustover, author of Harmony Hears a Hoot, a story about Harmony an owl who has hearing loss.
Sonya, a turtle, and her counselor/Co-Founder of Camped Up Dana Selznick
“As a hearing education service provider during the year, I typically see these campers in a mainstream school setting. It’s great to connect with the campers outside of an academic environment and to see them build friendships with other kids wearing cochlear implants and hearing aids. I love to see that ‘aha’ moment, when they realize that there are other people just like them.” – Brandi Prell, CampedUp counselor.
One of the most valuable lessons CampedUp teaches to its campers is self-advocacy. These skills are interwoven into the activities campers do all day long. “We foster conversations among our older kids about their hearing loss and talk about how they describe their hearing loss to their hearing friends,” explains Dana. “Campers share what they like about their listening devices as well as challenges that they may have experienced, so that the campers can help each other problem solve solutions.”
For CampedUp’s younger kids: “We read stories about characters who, like them, have hearing loss. We also encourage campers to include their listening devices in their art work. Throughout the entire camp day, campers are encouraged to identify when they need a word repeated. We help them figure out how to find the best seats for their listening needs. Campers also learn to take care of their equipment during sprinkler time when we are taking off and switching devices,” she says.
As I put Sonya to bed the other night, she asked me, “Mom, do we have camp tomorrow?”
“Yes,” I responded.
“Okay, good.” she smiled sweetly, “I love to go there.”
In the mornings, as I push Sonya down West End Avenue in her stroller, Sonya sings. Loudly. Sometimes she takes requests. Most of the time she sings to her own soundtrack, on repeat. It’s pretty cute. Strangers often smile as we pass. I love to sing too, so I sometimes try to accompany, to which she immediately protests. “Stop Mom! It’s my turn! Okay?”
During our walks, Sonya sings the ABCs, Mary Had a Little Lamb, Frère Jacque (en Français – pas mal!), Songs of her own invention and her favorite new song “The Orange Room class song.” The Orange Room is Sonya’s room at nursery school. She attends a mainstream two’s program at the Nursery School at Habonim.
The Orange Room is the place to be We learn to count. One, two, three Music, yoga, science too Our school colors are orange and blue! The Orange Room is the place to be We’re as happy as happy can be!
I can’t help but feel this is pretty amazing progress considering Sonya was born deaf and has worn bilateral cochlear implants since she was eight months old.
While Sonya often sings to express joy, she also turns to music when she is angry. Her current ‘go-to’ angry song is one she wrote herself. It goes:
I don’t like
I don’t like
I don’t like
Mommy Missy!
As I often discuss on this blog, when we learned Sonya would need cochlear implants we were initially very concerned about what this would mean in terms of her appreciation of music. Now, Sonya hasn’t yet demonstrated tone or pitch accuracy. She often starts a song in one key and ends up in a different key. According to AudiologyOnline, most kids develop this skill by kindergarten, though these are skills that might be more difficult for someone using cochlear implants. Cochlear implants were developed to access speech. Music is more complex. But, clearly, there is much we don’t understand about electronic hearing. Despite the obstacles, Sonya loves to sing. She loves to dance. And for the time being, she seems to enjoy it as well as her friends who hear acoustically.
Hearing Sonya Rose 