Is your family obsessed with Halloween? I have always loved dressing up and the spirit around this holiday, but having a toddler during Halloween elevates the fun and cuteness to a new level! Yes, I bought Sonya’s Halloween costume in July (it was on sale then!) and as soon as Oct. 1 came, the apartment was decorated with spider webs, pumpkins and ghosts.
Recently, Sonya’s speech therapists have started incorporating the holiday into their sessions, and I thought you might enjoy learning about some of the wonderfully creative ideas they have had! This week, we made pumpkin cloud dough and it was just the cutest:
Pumpkin Cloud Dough
Not only was it a great sensory activity, it incorporated new vocabulary and story sequencing as well. I have included Sonya’s speech therapist Jen’s recipe for pumpkin cloud dough, followed with some of the speech-related activities around it!
Pumpkin Cloud Recipe: 1 cup hair conditioner
2 cups corn starch
red and yellow food coloring
a dash of cinnamon
Simply pour the hair conditioner and corn starch in a glass bowl and use your hands to mix. Add a few drops of red and yellow food coloring and a few shakes of cinnamon and voila!: pumpkin cloud dough! Jen smartly divided up her colorless/scentless dough into small plastic bags for each child, and then let Sonya handle coloring and scenting the dough before we played with it. If your child is hesitant to get their hands dirty, they can also just mix the dough in the plastic bag.
Once the dough was complete, Jen asked Sonya to walk us through how we made it, step by step. She used an iPad with pictures of each step in the recipe process. This was definitely a challenging game for a three year old.
What Fall-inspired speech therapy activities do your kids love? I’ll definitely share more as I come across them 🙂
When Sonya was just a few months old, her speech therapist pulled out an iPad during one of our sessions and opened the game “Peekaboo Barn” I was immediately concerned. I had always been told that screen time was bad for kids. It seemed almost like a cop-out and it wasn’t until after the session when I brought up these concerns that I began to understand the benefit that this amazing device can have for kids with hearing loss.
Today, Sonya’s iPad has become one of our most important speech therapy tools. At the same time, we must use it responsibly. Our philosophy is that it is okay in small doses and in specific contexts. Sonya can use her iPad in the car or airplane, and at restaurants. We try to focus on active entertainment (i.e. games) as opposed to passive entertainment (TV shows or movies). It’s also a great way to motivate Sonya to put her CIs back on, as I wrote about here.
Here are some of our favorite games for hearing loss. I’d love to hear your recommendations, too…
When Sonya was approved for Early Intervention, we immediately put in a request for an FM system. She was only eight months or so at the time, but we knew having a device would be useful. We were approved to receive a Phonak Roger. Here I am wearing it while visiting Sonya at school last year. Continue reading “Love in the Time of the Roger Phonak Touchscreen Mic”
I love telling people about how Yan and I met. It took place in New York City circa late 2007 at a loud bar in the East Village. Upon being introduced by a mutual friend, I soon learned that Yan was a pianist and I was immediately entranced. On our second date, Yan invited me over to his apartment where he made me a mushroom omelette sandwich and then serenaded me by playing Chopin’s Etude no. 3 on his upright piano. I knew at that moment I would marry him! Here is a video of Yan playing:
Fast forward ten years. We are married. We have a grand piano that literally takes up 34 percent of our living room, and we have a three-year-old daughter who is ready for piano lessons (well, according to Yan – but perhaps this is debatable). The only issue is our daughter is was born deaf and wears bilateral cochlear implants. That said, she has always loved music. And we have decided to move forward with piano lessons!
However, Yan’s very Russian mantra “chain her to the piano!” may not yet apply. At least for now. Instead, we devote just five minutes a day to the piano and only if she is up for it. We don’t put her in front of the piano when she is tired or not feeling great. The key is for her to associate the piano with something fun. Not for it to be a drag or chore.
The next few weeks, we are working on accomplishing a few small goals:
For Sonya to be excited to play piano
For Sonya to identify the C key throughout the keyboard
For Sonya to have a general understanding of the keyboard
For now, Sonya is to identify two black keys on the keyboard, press them with her two fingers, then skip to the next three black keys and say “skip”. She then must find the next two black keys. We do this up and down the piano using her left and right hands.
Once she has mastered this, we will work on finding the two black keys, and then finding C.
Since the keys of our grand piano are still a bit heavy for Sonya’s tiny fingers, we purchased the MunkikiM Roll Up Rainbow Piano, which Sonya received on her birthday. The piano rolls up so is easy to store in our small apartment, and the colorful keys are perfect for visual learners like Sonya. She also received My First Keyboard Book, which has a small keyboard and simple songs with visual cues that Sonya can learn to play.
We have a wonderful piano teacher (who is incredibly talented – we aren’t kidding around here:). He visits us periodically to gage Sonya’s progress. Piano isn’t for everyone. It may not be for Sonya, ultimately. She is, after all, genetically predisposed both to love it (given who her parents are) and at the same time for it to be a great challenge for her.
We are tackling hearing loss-related literacy issues head on by having Sonya learn to read early! Check out what we are doing and tips from hearing loss professionals on how to foster strong literacy skills at home and at school.
This past week, Sonya started to learn to read! Well, actually, she started learning her letters, but once a week moving forward she will work with Dana Selznick, education specialist at the Center for Hearing and Communication, to work on literacy skills.
Like other children with hearing loss, Sonya is susceptible to having difficulties in all areas of academic achievement, especially reading and mathematical concepts. According to Reading Rockets, a national literacy initiative, the effect of hearing loss on academic achievement is distressing:
Children with mild to moderate hearing losses, on average, achieve one to four grade levels lower than their peers with normal hearing, unless appropriate management occurs.
Children with severe to profound hearing loss usually achieve skills no higher than the third- or fourth-grade level, unless appropriate educational intervention occurs early.
The gap in academic achievement between children with normal hearing and those with hearing loss usually widens as they progress through school.
Thankfully, extra support for children with hearing loss can significantly improve these effects. Under Dana’s guidance, we will work to help Sonya learn to read hopefully before entering kindergarten.
Our first reading lesson involved identifying the letters of the alphabet, placing those letters on an “alphabet train,” and coordinating images and sounds with letters.
In addition to learning letters and the alphabet, we spent a portion of the hour reading Elephant and Piggie books together. To Sonya’s delight, Dana has the plush Gerald the Elephant and Piggie set. Sonya held Piggie and I held Gerald as we acted out the story. It was a great way to integrate play, listening, speech and language along with reading. (I just bought the plush set for Sonya’s upcoming birthday, so we can reenact this at home too!)
We have been instructed to work on our letters and sounds every day at home. After our lesson, Dana gave us print outs of the letters we worked on. On Thursday, Sonya spent time coloring each letter. The next day, we played a game using the letters from the Melissa & Doug Magnetic Chalkboard. I presented Sonya with five letters and asked her which one makes the “b” sound, “a” sound, etc. Doing something different every day to keep it interesting is critical. I am perusing Pinterest for other ideas and will share them if helpful.
Dana recently wrote a blog post for CHC’s “Back to School Buzz” on this topic, and suggested parents follow the below tips to foster strong literacy skills at home and at school:
Literacy learning tips for children with hearing loss according to Dana:
Nightly Reading – Encourage nightly reading at all age levels by establishing a reading routine and sticking to it. You’ll promote language skills while creating a special nightly experience. Be sure to discuss the book you’re reading to aid comprehension and point out words and images as you go along. Reading charts can keep track of your progress and help instill a love of reading.
New Vocabulary – Be sure to regularly introduce new stories so that your child encounters new sounds and vocabulary. Exposure to story lines encourages the use of new vocabulary that children may not encounter in their everyday language.
Book Recommendations – Dana recommends visiting the Scholastic website and searching titles by age group. For preschool and elementary students, She really likes the “If You Give” series by Laura Numeroff and the “Little Old Lady” series by Catharina Ingelman-Sundberg. You can chose titles that focus on a letter sound that your child’s therapist is working on, such as “If You Give a Pig a Pancake” for the letter sound “p”. Having your child repeat back sentences and dialogue from the story fosters sequential memory.
Technology Considerations – It’s vitally important to make sure your child has maximum access to sound at home and in school. CHC’s Back-to-School Audiology Tips by pediatric audiologist Anita Stein-Meyers will help you and your child’s teacher identify and fix common problems that can occur with hearing technology.
Advocate at School – Reach out to teachers at the start of the school year to make sure they understand your child’s listening challenges in the classroom and take appropriate action.
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!
“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!
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.
“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.”
When we came back from Sonya’s cochlear implant activation, we received two large suitcases (one for each processor) filled with equipment. Learning how to use the equipment has been one challenge. Figuring out how best to store it has been another. I thought it would be helpful to walk you through how we have stored her devices and equipment!
As I discussed in the video, storing the various chargers, cords, etc., is challenging. The Grid It is an amazing tool. It is compact and fits tons. We LOVE IT.
Hope this is helpful! Look forward to learning any tips parents might have for storing their equipment. And I should probably start dealing with my “broken equipment” container 😉
Sonya’s hearing loss is non-syndromic, meaning it has no other symptoms aside from hearing loss, but for many children this is not the case. Alex Diaz-Granados, an editor at Cerebralpalsyguidance.com (an amazing resource for parents of children with cerebral palsy – by the way) lives with cerebral palsy. He penned the below guest column, which resonated deeply with me, and I hope for you too. Despite a different diagnosis, parent education and connecting with other families has been critical for us – and it’s why I started this blog!
Hearing Loss and Cerebral Palsy: What Parents Need to Know By Alex Diaz-Granados
Studies have found that the rate of hearing loss in children born with cerebral palsy can be as high as 13 percent. For parents, to find that your child not only has this neurological condition, but also has complications like loss of hearing, is a pretty big blow. Hearing loss is just one of the possible complications of cerebral palsy, but it is a common one. Here are some important steps to take after your child gets this diagnosis:
Learn everything you can about your child’s hearing loss Knowledge is power and the more you know, the more you can help your child. Children with cerebral palsy who also have hearing loss have one of two types:
Conductive hearing loss means that sounds cannot get through the ear canal from the outer to inner ear. There is some kind of blockage or a problem with the ear bones. This is sometimes also called glue ear or otitis media with effusion because it often occurs with fluid buildup.
Sensorineural hearing loss occurs when there is a problem with the auditory nerve or the hairs in the inner ear.
Either type of hearing loss may range from mild to severe. Mild cases of conductive hearing loss may clear up, but may also be corrected with surgery. The damage that causes sensorineural hearing loss is permanent, but hearing can be improved with hearing aids and cochlear implants in many cases.
Talk to your pediatrician about treatment options and specialists Reading up on everything you can about hearing loss is a great first step. Armed with that knowledge, you can then discuss with your pediatrician what your options are. You will likely need to take your child to one or more specialists, so find out what your pediatrician recommends and get started on appointments with audiologists, otolaryngologists, and others. The sooner you find out the kind of treatment your child will benefit from, the sooner you can implement it and help him hear better or learn to live with a hearing deficit.
Remember that your child is a child first When you keep in mind that your kid is just a kid, like any other, you can better teach him not to let his disability define him. He may have hearing loss, but first and foremost he is a kid who will learn, grow, and explore. It’s up to you how you guide him as he grows, and how much emphasis you place on his disability. If you teach him not to be limited by it, he won’t be.
About the author: Alex was born premature in a Miami hospital in 1963. He suffered irreversible brain damage when a nurse in the hospital’s maternity ward forgot to turn on the oxygen supply. He has overcome many physical and emotional obstacles. He currently serves as editor at cerebralpalsyguidance.com and as a freelance writer for Examiner.com.
Thank you, Alex, for sharing this valuable information!!
Today, more parents are learning that their children have hearing loss earlier than ever before. According to the NIH, about 2 to 3 children of every 1,000 in the United States are born with detectable hearing loss in one or both ears. And more than 90 percent of those cases are born to hearing parents.
For parents like us, who have children born with profound hearing loss, here is what you can expect that first year once they fail their initial hearing screen at the hospital:
Genetic testing: Because Yan and I are both Jewish of Ashkenazi descent, we did a Counysl prenatal screen when I was about 10 weeks pregnant. At the time, it was an annoying inconvenience, but in retrospect, it was the most important test of my life. The test confirmed before Sonya was even born that Yan and I were both carriers of a non-syndromic hearing loss gene (meaning no other symptoms aside from hearing loss) called Connexin 26. It was devastating news to receive while pregnant (I discuss receiving the call from our doctor here), but it gave us the information we needed to move forward quickly once Sonya was born and had failed her hearing screen.
In addition to us taking the Counsyl test, Sonya also received genetic testing when she was 14 days old to confirm the cause of hearing loss. This was not an easy time to say the least, but I am grateful we accomplished it so early.
Auditory Brainstem Response (ABR): A more sophisticated way to diagnose hearing loss conducted by an audiologist. For an infant, this is a long – but painless test – which measures the reaction of your child’s auditory nerves to sound. It is safe and it does not hurt your child. For babies younger than six months, it is done while he or she naps. Sonya did an ABR test twice when she was about two weeks old.
At this point, Sonya was diagnosed as deaf. We received loner hearing aids immediately from NYU.
Evaluations to determine candidacy for Early Intervention and the Deaf Infant Program: Soon after Sonya failed her ABR, I contacted Early Intervention. The Early Intervention is a state-sponsored program that supports families from birth to three who have disabilities or developmental delays. The first step is for the child to be evaluated. A case worker came to our apartment and asked us basic questions, and at that point determined Sonya would be a candidate for EI services.
The next step took place at the Center for Hearing and Communication in Manhattan. We made the schlep downtown (the first of many) and had her evaluated by speech therapists and audiologists. The process took a few days, but ultimately, it was decided that she was also eligible for the Deaf Infant Program, a privately funded program that provides speech therapy services (and transportation to and from a speech therapy center) for children with profound hearing loss in New York.
Lots and lots of speech therapy: Sonya started speech therapy through Early Intervention and the Deaf Infant Program at three months. This included two to three 60 minute individual speech therapy sessions a week and a group therapy session. She also received her own pair of hearing aids through Early Intervention.
Evaluations to determine candidacy for cochlear implants: At four months, we took Sonya to NYU’s Cochlear Implant Center where a team of audiologists and speech pathologists determined after numerous tests and evaluations that Sonya would be a good candidate for cochlear implants. We also met with Dr. Tom Roland, the surgeon, around that time – who gave us a bit more information about what the surgical process.
MRI: While all other evaluations pointed to cochlear implants as having the greatest benefit for Sonya, Dr. Roland required an MRI to be conducted to ensure the anatomy of Sonya’s ears were suitable for the devices. It’s never easy to put your baby under anesthesia, but after two failed attempts at CT Scans, I was game. The MRI gave the doctor a detailed view of Sonya’s ears, and it gave us a glimpse at what the surgery day would be like as it took place at the same hospital and prepped us for what it would be like for Sonya to go under anesthetic.
A few days later, Sonya was cleared for the surgery. We scheduled it for when she was seven months old.
Choosing a device: Many families struggle with the decision as to which device is best for their child. Between Advanced Bionics, Cochlear and MED-EL, the choice is not always clear. We opted for Cochlear because the internal component was the smallest and the newest at the time (2015). That said, I know many families who went with Advanced Bionics and have been very happy with their choice. Ultimately, all of the companies have great reviews and there is no research I am aware of that shows one device has better hearing results than the other.
In addition to the brand, you will also need to choose the color of the processor and coil. Parents usually go by hair color. We went by skin color because Sonya had no hair at the time.
The surgery: See my post on Sonya’s cochlear implant surgery here.
Activation: Two to three weeks after the surgery, the cochlear implants will be activated. This is the first time your child will hear. Check out my post on Sonya’s activation here – which includes videos of the actual activation of the devices.
As you can see, the timeline is not easy. But then, THEN!! you will have a little one who hears! I am tearing up watching this old video of Sonya who couldn’t yet speak at less than a year, but definitely could hear!
And before you know it, a couple years have passed and she is talking on par or ahead of her hearing peers. Thanks speech therapy!