Over the years I have spoken with numerous parents, from a personal as well as a professional perspective and while every family responds differently to a hearing loss diagnosis, there are also some characteristics that more successful families share.

Adjust Your Attitude

I have written about this before, but your attitude and acceptance of your child’s hearing loss goes a long way to creating a more peaceful climate for everyone. Children are really good at sensing the moods of others. If you are stressed and tense all the time about your child’s diagnosis, your child will begin to feel that there is something not good about their hearing loss.

Yoshinaga-Itano and Abdala de Uzcategui, (2001) have shown that parents of children with mild to moderate hearing loss are often more stressed than parents of children with more profound losses. Reasons can be they face more educational and therapeutic choices; also there is the potential that their child will have further hearing loss which can be stressful.

While I understand these stresses, having been through them, I also know the power of practicing a positive attitude.

Talk About It

Get real comfortable talking about your child’s hearing loss. When your child sees how easily you talk about hearing loss they will feel more comfortable about themselves.

If you don’t talk about and discuss hearing loss with your child then they will be uncomfortable discussing it with other people. They won’t know how to answer questions, or how to speak up when their needs aren’t being met.

Keep Things in Perspective

Yes, your child has hearing loss and no; it is not the end of the world. Yes, your child will need assistance with communication either through a device (such as hearing aids or cochlear implants), or through the learning of ASL or lip-reading. But the opportunities today are limitless.

Move Beyond “Why Me?”

If you are okay with your child’s hearing loss, they will be okay. There will be some changes that will need to be made with regard to education and communication needs, but what won’t change is the need your child has for love and support. Find the joy in your child’s voice, or the thrill of having them sign their first full thought. It’s about adapting and coming to terms with the child you have, rather than the child you don’t have.

Finding a summer camp for your child with hearing loss can be a tricky endeavor. While summer programs can be a time when your child expands their horizons in a new environment, it can also be tricky when you have to teach counselors about communication needs, and equipment troubleshooting.

Enter Dana Selznick. I recently had the opportunity to connect with this Hearing Education Service (HES) provider, who works on the Upper West Side in New York City. Dana, along with her two partners Arielle Ditkowich and Brittany Prell (fellow HES providers) is opening a summer program designed specifically for Hearing Aid and Cochlear Implant users.

I caught up with the three co-founders of Camped Up and we had the chance to discuss how they met, goals of the program, and summer camp memories!

It sounds like you three have a bunch great energy going on between you. How did you meet?

Dana and Arielle became instant friends during orientation on the first day of grad school. The next year Brittany started the same program and all the professors kept telling each of us how similar we were to each other. When the three of us finally met it was clear our professors knew us well, we have been friends ever since. After graduation we all started careers as New York City HES providers and have succeeded with each others help and guidance.

Why a summer camp? Where did idea for Camped Up come from?

Arielle is very active in summer camps and was thinking about a way to bring her love of camp to students in the New York area. She approached Dana and Brittany with the idea of starting a camp in NYC for Hearing Aid and Cochlear Implant users and they jumped on the idea! She also thought of Neil, a good friend and former camp director at her lifelong sleepaway camp who now runs multiple camps throughout the US. Upon calling him for advice, he loved the idea so much he immediately said he wanted to be a part of it and offered years of camp and administrative expertise.

One dinner later, Camped Up was formed.  We ran the idea by a few parents and they loved it. 

What can you tell me about Camped Up? What will it offer for children with hearing loss that other camps don’t?

We have created a camp that every child in New York would fall in love with.  The reason that it is a specialized camp for hearing loss and spoken language is because we make the environment conducive for listening.

Our camp avoids any acoustic challenges by providing appropriate modifications to the environment. We have the tools, technology and training necessary to provide the best possible experience for all of our campers. This camp has something for everybody. 

Whether you are into sports, arts and crafts or science, Camped Up is an all around fun day camp!   

What do you hope Camped Up will accomplish? What experiences do you want children to have?

We thought that it would be a great idea to provide children with a summer camp experience in which they could come together and play with other Hearing Aid and Cochlear Implant users. We hope that our campers will gain a sense of pride and comfort with their hearing loss, and make new friendships within this community. 

We want our campers to have an all around amazing summer camp experience. We want them excited to come to camp in the morning and not wanting to leave at the end of the day. At the end of camp we hope they will go home with new friends, the same love for camp that we had as campers, and memories from the exciting activities that they will be talking about for months to come.

Can you tell me a bit about the experiences you all bring to the camp?

All three of us have a dual masters degree from Columbia University- Teachers College in Deaf and Hard of Hearing Education. There we learned how to use all forms of assistive technology, and have been implementing these skills throughout our careers as New York City HES providers. Together we have years of camp experience and involvement in a wide variety of programs geared towards children. And most importantly we all share a love of children. 

Did any of you go to camp as a child? What memories do you have?

You could say that, collectively we have over 45 years of camp experience! All of us have attended day camps, sleep away camps and have gone from counselors, to group leaders throughout the years.

Dana’s favorite memories from camp are the camp songs and cheers she learned and sang throughout the summers.

Brittany loved the circle games and team building activities she played with her camp friends.

Arielle’s favorite memory was making a picture frame in Arts and Crafts that still sits on her desk with pictures from camp.

 Is there anything else you want to share about Camped Up?

We just want everyone to know that CampedUp’s main goal is to provide an awesome summer for your child!

Thank you for taking the time to meet with me, and I wish you all a great summer of creating camp memories for a new generation of children. For more information about Camped Up, please visit their website at www.campedup.com

My son’s school has a book of the month. Each month several copies of the same book are passed from family to family, and the entire community spends some time reading the same book. The books are always picture books, meant to be read in one sitting. It’s an interesting program and one that always brings home a book, and an author, that we are not familiar with.

The books are generally tied in to the theme of the month – which is often reduced to a word or a phrase that the students and teachers spend time talking about and doing activities around.

This month the book is called Ish, by Peter H. Reynolds and the word is PRAISE.

Ish is about a boy, Ramon, who loves to draw. He draws everything and he draws everywhere he goes. One day he is drawing some flowers and his older brother laughs at him. Ramon becomes upset and stops drawing. He becomes upset because his drawings aren’t perfect. He is rescued by his younger sister, Marisol, who has collected an entire gallery of Ramon’s cast-off drawings. As she walks Ramon through the gallery she describes a picture of a vase as “vase-ish” and this one word unlocks Ramon’s mind and he starts drawing again with a passion. Drawing trees that look “tree-ish” and houses that look “house-ish” and suns that look “sun-ish.” His mind is freed because he is no longer trying to define his drawings before he has even started.

This lead me to begin thinking of my son and where he fits in the world. He could be “hearing-ish” or he could be “deaf-ish” – it’s really a matter of how you look at it. And maybe if we weren’t so busy defining everything as parents, and educators – then we could simply allow our children to define themselves as they wish.

And really that would be okay because we are all sort of “ish” in our respective ways.

I can’t even begin to describe all the changes that have occurred in those four years. Hearing loss has become a part of our life, but not in the way that I imagined.

When my son was first diagnosed I saw the hearing loss and hearing aids as being front and center in our lives. I thought that is all that people would focus on, all that we would be focused on. But, instead, the hearing aids have slipped slowly into the background, they have become secondary.

My son turns seven in a few short weeks. He loves Ninjago, playing the piano, riding his bike, and playing basketball with his friends at recess. He paints, plays ice hockey, skis, and swims. He loves to tell jokes, read books, and write stories – and oh yeah – he wears bilateral hearing aids. No big deal.

Comments like these are heard in classrooms and playgrounds the world over. I often overhear my own children making similar comments (We have to play my game first, or I won’t play with you!). Most of the time these comments are tossed around in a casual fashion and five minutes later the children involved are best buddies again. However, comments such as these, and the intentions behind them, are not always innocent. I recently experienced a situation where a child was so desperate to hang onto his “friend” that he was doing whatever the boy asked.

Luckily the family was able to resolve the situation, but this led me to thinking how quickly a bullying situation can start without anyone really seeing it. When a child is being coerced into acting inappropriately premised on the loss of friendship – that is bullying. It needs to be addressed with all parties involved, I disagree with punishing the bully, but there does need to be discussion about feelings, behaviors, and expectations coupled with consequences.

The friendship world can be tricky to navigate. Some children have a difficult time distinguishing between supportive relationships and relationships that have a different motive.

I recently spoke with Dr. Jennifer Reesman, Director, DREAM (Deafness-Related Evaluations and More) Clinic in Baltimore, Maryland, about friendships and children with hearing loss and how easy it is to misread social situations. “Children want to fit in, they want to be part of a group,” says Dr. Reesman, “often times I hear of situations where the child will go along with a group that is really making fun of him, because he doesn’t realize the difference.”

Dr. Reesman suggests that families talk about friendship at home. “This shared, open communication is important in building resiliency in your child,” says Dr. Reesman. “Start at an early age, and discuss the idea of friendship. Help your child understand the difference between what friends do and what friends don’t do. Find out who your child’s friends are, invite them over to your house, stay connected with how they talk and play together.”

It’s important to remember that friends and family members often tease one another good naturedly. The difference between friendly and unfriendly teasing has to do with the cues that surround the words – tone of voice, body posture, and facial expressions. All those social cues that children who are deaf and hard of hearing often have a difficult time picking up on. Role play with your child. Say phrases to him in a friendly voice and a mean voice. Sign unfriendly phrases to him. What do friendly facial expressions and signs look like? Have him distinguish between the two and also have him practice what they could do in response.

Helping your child become more aware of the intentions of others can go a long way towards navigating the world of friendship.

During this time there is a tendency by all involved (parents, educators, and therapists) to focus on the learning and behavior problems that your child has, and little time is spent discussing the strengths that she brings to the classroom. If goals are not being met on an IEP and there are still areas of weakness, then the solution is often to increase time spent on these areas. Is your child struggling with writing? Then let’s make her spend more time on isolated writing exercises. Is your child having problems following multi-step directions? Then lets pull him out of the classroom and make him practice this skill.

While I am not against providing children with opportunities to increase their skills and knowledge through practice (Malcolm Gladwell suggests it takes 10,000 hours of practicing a specific task to become successful.) I do think that we often focus on the weaknesses of our children at the expense of their strengths.

Stanley Greenspan, in his book Playground Politics: Understanding the Emotional Life of Your School-Age Child, asks us to imagine how we would feel if we were made to spend 90 percent of our time doing tasks that were difficult. One example he uses is what if you were right handed, but made to write with your left hand several hours a day. The results would be frustrating and would not make you develop enjoyment of the task. Dr. Greenspan’s suggestion is to “spend no more than 50 percent of practice time on a child’s weakness,” the other 50 percent of the time should be spent on developing your child’s natural strengths.

Think of ways to help your child use their strengths to develop their weaknesses. By working together with your child’s IEP team you should be able to arrive at some creative solutions, rather than simply writing down the same old frustrating exercises.

Related articles

• I Got Yer IEP Right Here: A Survivalist’s Manifesto
• Building Home-School Partnerships
• The IEP

to pay attention to sound

to hear something with thoughtful attention: give consideration

to be alert to catch an expected sound

I find it interesting that being alert and paying attention are highlighted in each meaning. As parents we pride ourselves on our multitasking abilities. Look how easily we can get dinner ready, send a text message, and catch up on the day’s news, all while listening to our child talk about the art project she worked on at school.

It is easy to fool ourselves that we are listening. After all we have alerted our ears to pick up the sound of our child’s voice, but listening involves more than simply using your ears – it involves your eyes, ears, and heart (Medwid & Weston, 1995).

As parents of children who are DHH it is particularly important to pay attention when our children are speaking. Communication becomes exhausting, and breaks down easily, when the listener doesn’t understand what the speaker has said, but pretends they do.

Here are some tips to help you listen better:

• Pay attention with your eyes. If ASL is part of your communication method, then you are way ahead on this one! In order to be an effective communicator in ASL you need to pay attention with your entire eyes – on the lookout for subtle differences in gestures and facial expressions.

• However, if you and your child communicate orally/aurally you should be paying just as much attention with your eyes. Your child is constantly sending you visual messages that go along with their words – body language and facial expressions. If you truly are too busy to pay full attention at the moment tell your child: “I really want to listen to what you have to say. Just give me five minutes to chop these onions and I will be able to hear you better.”
  

• Repeat what your child says. There is no need to give a “play by play” of what your child has just said. But if your child is trying to tell you about difficult feelings, has a specific request, or is simply telling you a long story it is a good idea to repeat back what you just heard. This can clear up any confusion or misunderstanding that might be happening on either part. It can be as simple as saying something like, “So, you want to know if we are going to the store before or after dinner?”

• Be warned – repetition is a must when your child says something that you do not understand. Never pretend that you understand when you don’t – your child will begin to feel like you are not really listening and won’t always talk the time to tell you what they are thinking. What’s the point if you are only pretending to understand?

• Listening all the way through: We like to be prepared as parents. We want to make sure we can answer our child’s questions; help they understand their feelings; and generally like to stay one step ahead. This often means that halfway through listening we tune out, or begin to think ahead, of what our answer might be. It’s okay to take some time to put together an answer after your child has finished speaking. It’s even okay if we “hem” and “haw” a little bit. When you take the time to slow down you can ensure that you understand exactly what your child is trying to saw.

Taking the time to listen with your eyes, repeat what your child has said, and listening all the way through, not only helps increase your communication with your child, but also serves as a model for what your child needs to do when they are in a conversation that they don’t understand.

Sources: Medwid & Weston (1995) Kid-Friendly Parenting with Deaf and Hard of Hearing Children, Gallaudet

Karen you have a great deal of experience working in the deaf and hard of hearing community. You have also had your own reality of dealing with hearing loss over the course of your life. What made you want to write the book at this particular time in your life?

The book just kind of poured out of me. I spent many years working with families with deaf and hard of hearing children as well as raising my own three kids and I just wanted to share my experiences and the lessons I’ve learned along the journey.  For me, one of the most valuable aspects in this whole parenting experience has been the wisdom, support and sharing from other parents. I wanted “The Parenting Journey” to be an extension of that.

When you have a child with hearing loss it can be difficult to sometimes distinguish between behavior that can be attributed to typical child development and behavior that is specific to your child’s hearing loss. In your book you mention that it “shouldn’t always be about the hearing loss.” What advice can you give parents about how they can help with their child’s needs?

That’s always a toughie! As a parent, you have to step back and ask yourself, “Would my child be going through/experiencing this if he/she wasn’t deaf/hard of hearing?” The answer isn’t always easy or clear.  Always check to make sure that communication is happening and that both you and your child understand each other – that helps rule out the deaf/hard of hearing part of the equation.

Another thing to ask yourself when it comes to your child’s behavior is, “Will this matter ten minutes, ten months or ten years from now?”  If it’s something that’s going to solve itself in a short amount of time, then pick your battles wisely.

In your book you talk a lot about the importance of recognizing options and choices in dealing with hearing loss. What can parents do when they feel overwhelmed by the decisions and choices they need to make?

The good ‘ole “pros and cons” list can be helpful. In areas where you need more information or education, seek out mentors (parents, professionals and D/deaf/hard of hearing adults) and ask questions.

Dan Miller from 48days.com has some general guidelines that I think applies very well:

1. State the situation/issue.
2. Get advice.
3. List alternatives.
4. Choose the best alternative.
5. ACT.

If you’re overwhelmed, take some time to do nothing. Understand that doing nothing, is also a choice. Ultimately, you have to get into a place where you and your spouse/partner/significant other “own” your decisions for your child. You’re doing the best you can with the information and resources you have at the time. Also, look at your child– you will find that you learn a lot from your child and the journey changes as you all grow as a family.

Great advice! As you know parenting is full of ups and downs. Have there been certain times throughout your journey that were particularly difficult?

Yes, we’ve faced twists and turns on the journey. We’ve encountered the occasional team member who did not agree with our decisions. The kids themselves have moments where they’re facing challenges and as a parent, it can be really difficult to watch your child go through struggles. As a parent, our natural instinct is to smooth the road for them, but they have to learn to do this themselves.

Agreed! It is so important to provide our children with tools they can use in difficult situations. It sounds like you were able to find a great deal of support on your journey of and we know how critical it is for parents and children to find support. Do you have any suggestions how parents can go about trying to find support when they live in an isolated area?

Support can indeed be a challenge and sometimes it feels like you’re all alone on the journey. Seek out organizations serving parents and request support. There are online groups as well. Local hospitals, schools and service organizations may have regular meetings for parents. Thanks to technology, Skype, ooVoo and videophones offer face-to-face opportunities for parents to connect with other parents, professionals and D/deaf/hard of hearing adults.

Karen, I thank you for taking the time for the interview. Your book is a wonderful addition to the resources available for parents of children who are deaf and hard of hearing. I wish you luck with your future projects!

In addition to all the work that Karen does in the DHH community she is also a Passion Coach and the author of three books. In her spare time, she can be found walking on water or competing at barefoot water ski tournaments. You can read more about Karen and her parenting journey on her blog deafmomworld.com

Directed and produced by Hilari Scarl, the film follows four deaf entertainers, Robert DeMayo (actor), Bob Hiltermann (drummer), CJ Jones (comic), and TL Forsberg (singer), as they work towards finding their way in the entertainment industry.

Despite their obvious talents and success in the “Deaf world” the entertainers are virtually unknown in the hearing world. The documentary is not preachy, but instead it highlights the divides and separations between two cultures, and what it might take to break down barriers.

One of the most powerful moments for me came when Ms. Forsberg, who is not “Deaf” but rather hard of hearing, describes how her hearing loss leaves her trying to fit into both the hearing and the deaf world, and in some sense being rejected by both. I get that. That is exactly where my son and I fit in, or don’t fit in.

This lack of fitting in is one of the parts of the Deaf community that I don’t understand. Many of the complaints I hear from the Deaf community are about the barriers that the hearing world sets up, what I don’t hear though is that the Deaf community puts up just as many barriers to those with different degrees of hearing loss who want to enter the Deaf community. I get the pain, frustration, and discrimination that the deaf community has gone through, but I also get that there is strength in numbers and that it’s important to allow new members into a community. Erecting barriers won’t lead to greater acceptance, but instead to further isolation.

I used to be hearing, now I have hearing loss. I know others who used to have hearing loss, and are now deaf. Hearing, hearing loss, and deafness are all just different points on the same continuum. Realities that can shift seemingly overnight.

I ask this question of myself as 2012 draws to a close. January can be a time of promise. The year still stretches out before me – the squares on my 2013 have yet to be filled in with competing after school activities, speech therapy sessions, and doctor’s appointments. For now my calendar sits there with a bounty of white space. There is room for change, for new routines, for new goals, for new connections. All my faults and shortcomings of the previous year can now be wiped clean and I can start again.

But before I can start trying to move forward, I need to figure out where I have been.

I feel that I often become so focused on where I think my son should be, that I don’t notice the bigger picture of all the progress that he has made as an individual with hearing loss, and that we have made as a family dealing with hearing loss.

Sometimes my focus is more on what goals my son still needs to cross off his IEP, instead of the ones he has already reached. I focus on trying to find time for my son to play with others to help with his social skills, instead of finding moments in our day to model social skills. Sometimes all I see his gaps in his knowledge and what I can do to fill them, instead of acknowledging all the connections and ideas that he has on a daily basis.

Sometimes I forget that he is only a six year old, and that hearing loss has only been in our lives for the last three years.

So I promise to be kinder to myself, to keep realistic expectations, and to celebrate those small everyday moments that are so easy to overlook.

Where do you want your family to be a year from now?