Sonya’s Third Year Evaluation

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:

  1. 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);
  2. A psych/ed evaluation, which assesses the child’s physical, mental, behavioral and emotional factors;
  3. A speech and comprehension evaluation, which assesses the child’s current abilities; and
  4. 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’ 🙂

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Yep. She’s a threenager.

 

Camping with Cochlear Implants

Sonya is attending CampedUp, a unique camp where kids with hearing loss can socialize, gain self advocacy skills and have an awesome time!

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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!

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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.
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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.

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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.”

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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.”

Pretty sure I made the right decision here 🙂

For more information on CampedUp, visit http://www.campedup.com or email info@campedup.com