Announcing my new initiative for children with hearing loss

ThankYou

I apologize for being somewhat silent over the past couple of months. But, I have been hard at work on a brand new initiative for supporting families of children with hearing loss.

My new initiative, Kids with Hearing Loss grew out of my search for down to earth, practical, everyday advice for raising a child with hearing loss. My purpose of creating this initiative is to provide a more supportive and user-friendly reading and browsing experience.

In order to access my new website simply click here and you will taken to the new site www.kidswithhearingloss.org. Be sure to scroll down the page and fill out the sign-up form located in the sidebar, that way you will continue to stay in the loop when new information and resources are added to the site. Additionally, when you sign up you will automatically receive my free resource, 5 Emotional Sticking Points of Raising a Child with Hearing Loss.


Thank you for all the support you have shown over the years. I look forward to continuing our relationship.

Best,

Krysty

 

 

 

Educating the Educators: Your Child with Hearing Loss in the Classroom

ClassroomThe minute you find out your child has hearing loss you step into a role that you most likely never imagined for yourself all those months, or years, ago when you first looked down and saw those two lines on your home pregnancy test; the role of teacher.

What does this mean for yourself and for your relationship with others? You might not realize it yet but you are on your way to becoming an expert. And it’s a role you need to assume, whether you like it or not.

Some of us might receive this news with a renewed sense of passion and enthusiasm (that’s what happened to me, although I didn’t have far to go as I was already an educator.) But for others this is a role that often seems impossible to fully embrace. They already have a career – they’re bankers or lawyers, or managers, or sales people, or healthcare workers, or electricians. They have other children, other responsibilities, and other stress.

But take a deep breath and realize that you don’t need to gain this knowledge all at once. You’ll do it slowly. You’ll accomplish this by attending a conference, or a seminar. You’ll find a webinar that looks interesting.

You’ll connect with other parents of children with hearing loss, whether that’s in a formal support group, parents you become friendly with at your child’s school or therapy sessions, or parent you have connected with over the internet.

You’ll read journal articles and blog posts about childhood hearing loss and slowly but surely you will begin to understand and make the connections with what the authors are saying.

And then you will be ready to teach others about your child’s hearing loss. And you will need to because the reality is the majority of our children will be educated in mainstream school settings and the mainstream isn’t always ready for them. And that’s okay – that’s where you come in as a parent and pull out your suitcase full of knowledge and let it rip.

You will know how to move beyond that stale set of menu items the school district will present to you, the cookie cutter options that are supposed to benefit every child with hearing loss and help them to succeed.

You will be able to state that captions need to be available on all visual media for students with hearing loss; that sound fields and pass around microphones are not luxuries, but necessities to access all parts of the curriculum (and yes, I am still stunned to hear that some school districts believe that FMs are optional for students with hearing loss.)

You will be able to help the classroom teacher move beyond putting tennis balls on chair legs and preferential seating for your child (although these are a step in the right direction).

You will be able to explain that hearing loss is not a learning disability, but that children with hearing loss might also have a learning disability in addition to their hearing loss, and it’s important to get the right diagnosis for that.

You will be able to tell them that having Computer Assisted Real-time Translation (CART) in the classroom is no more of a distraction than doodling in your notebook and checking out because you are unable to follow what is being said.

Most teachers want to learn – they view themselves as lifelong learners, but like all of us are stretched for time. Most teachers want this information but they are afraid to ask, they are supposed to be the experts, they are supposed to know it all.

You can help them figure out where to begin with your child and the needs that your child has, and eventually as your child gets older they can take over in explaining and advocating for their own needs.

But you need to move into your new role one step at a time. Don’t spend time planning your child’s high school graduation while they are still in early intervention. Learn what you need to, maybe a little more so you can stay one step ahead of your child. Trust me – before you know it you will have the experience and the knowledge that you and your child need.

Don’t Listen: Teaching our children with hearing loss to never give up.

Don't Listen

Don’t Listen

Hearing loss is misunderstood in the mainstream. As parents of children with hearing loss we get it, our kids our made up of all of the same stuff as the rest of the kids on the block. As speech-language pathologists and educators we also get it, that hearing loss has absolutely no effect on how the mind works, the only issue is ensuring access to the curriculum.

But so many people do not get it. They are afraid and unsure how to interact with a child who has hearing loss. It’s easier to avoid eye contact and evade. I love this commercial for the fact that it puts everything right out in the open – the people that made fun, the people that didn’t believe, the people that said there was no room for difference.

The next time either you or your child have a rough day take a look at this video. It will bring tears to your eyes, and make you tingle with all that is possible. Sometimes it is better when you don’t listen.

(I tried to post the closed caption version, but it didn’t work. To see it click here

 

Your Child’s Hearing Loss: Permission to Begin Again

heart-shaped-cloud-828829-mThe start of a new year means different things to different people. For some parents of children with hearing loss it can be a time of renewal and reflection, a time to look at all the progress that has been made over the year. A time to get excited about what the upcoming year will hold.

For other parents it is a time filled with frustration and regret. The feeling of never really getting anywhere with their child’s hearing loss diagnosis and therapy. A time filled with “if onlys”, “what ifs” and “should haves.” But the good news is that whatever camp we see ourselves in, January allows us to start with a clean slate. We get to begin again.

These first few weeks of the New Year are a time to let go of self-judgment and the stress that has accumulated in your family over the past year. As the parent of a child with hearing loss it is so easy to become stuck in focusing on all the things you should have done differently, but you didn’t because you simply didn’t know you could do them differently.

Not knowing generally boils to down to…

  • Lack of money
  • Lack of time
  • Lack of resources
  • Lack of knowledge
  • Lack of support

 

But it is never too late to start again.  We continue to gain experiences and knowledge every day. We grow every time we read an article, a blog post, or a book. We gain support every time we talk to someone who is more experienced in raising a child with hearing loss, or if we ask questions of our child’s service provider. We can look for new paths to help us with the money and the resources we would like to help us with our child (the HLAA website has a great roundup of resources.)

 

So give yourself a break and a pat on the back that you have made it this far. Continue to grow and to question. Step back into your life

 

Let’s Hear it for Wendy Kupfer…

almigalcoverA couple of months ago I had the pleasure of interviewing Wendy Kupfer, Author of Let’s Hear It For Almigal. I could feel her energy through the telephone and her passion and zeal for inspiring children who are deaf and hard of hearing and their parents came through loud and clear.

She is giving away six copies of her acclaimed book. Almigal makes a great holiday gift and it would be a great addition to any library. There is still time to enter the giveaway, so swing by Wendy’s website for a chance to win.

Get Ready for Fun: How to Pair Hearing Aids and Cochlear Implants with Winter Activities

mr-snowman-under-construction-923720-mWinter has not quite hit in the part of the Northeast where I live, yet, so I am a little slow in getting into the outdoor spirit. Having grown up in the Canadian Rockies I am used to winter hitting hard and early. This past weekend we were up in the Adirondacks where winter has already hit and there was lots of snow to play in.

I love winter – it brings an abundance of outdoor activities that families can participate in together – from building a snow fort in the backyard, to skiing down the slopes. However, cold temperatures, snow, and the necessity of winter headgear, such as warm hats and protective helmets, can be a concern when your child wears hearing aids or cochlear implants.

 

While the newer generation of hearing instruments are sturdier than you think, especially those that are designed for pediatric use, you should still take some precautions when your child is playing around ice and snow. Here’s a round up of tips to help you with all the snow fun this winter!

 

Snow Play

 

Let age be your guide.

The age of the child is a factor when children are playing in the snow. A three year old might not understand how playing in the snow can lead to “wet” hearing aids. At this stage there is a need for a little extra supervision and assistance when outside. Consider investing in some protective hearing aids covers. Ear Gear is a popular cover used to protect hearing aids from moisture and dirt and comes with an optional leash to attach to the back of your child’s collar.

 

Starting at age 5 your child will be able to assume more responsibility and will know what situations might lead to wet hearing aids. “Our daughter spends a ton of time outdoors in the winter, so we made sure we found a hat that had a tight enough headband so that snow wouldn’t get in”, says a Vermont father, whose 10 year daughter uses bilateral cochlear implants, “but it’s still loose enough everywhere else so it doesn’t interfere with her microphones.”

 

What is the activity?

What your child is doing outside can also be in factor in how they wear their hearing equipment. “For us it very much depends on the situation. While we do try to keep our son’s hearing aids in as much as we can, if he wants to go outside and make snow angels in the backyard we often remove them just to be on the safe side”, says a mother whose 3 year old son is a bilateral hearing aid user. “But, if he wants to go sledding at the local hill we definitely keep them in, we just make sure he has a leash on that connects them to his jacket, in case they get bumped out.”

 

Skiing and Snowboarding with Hearing Instruments

 

Skiing with a hearing loss can present some challenges, however with some planning there is no reason why your child cannot participate. “Learning to ski really gave my son an extra boost of confidence,” says Kassie DePaiva, mother of J.Q. who wears a cochlear implant, “He’s not a big athlete but he loves skiing and now that he is 14 he is on a freestyle team and it’s something different from what his friends do.”

 

Protect, but don’t cover

 

A helmet is a necessity when learning how to ski; many ski areas require that children twelve and under wear one. Take the time to find a helmet that is both comfortable for your child and also one that lets the microphones remain exposed, so that your child can still hear. It is also worth it to invest in a helmet designed specifically for skiing as they are equipped with liners that will add an extra layer of warmth on cold days.

 

Using an FM system

 

The use of an FM system is not a necessity when skiing, however if your child has access to one it can add to the experience. “We never used an FM when skiing with J.Q.” says Ms. DePaiva, “it might have been helpful in some situations, but overall he has done great without one.” On the other hand, Janice Schacter Linz, maintains that “Skiing with an FM system was critical for my daughter (who is a bilateral hearing aid user). The instructor used to joke that she was probably the only child who could hear him.”

 

If you do decide to use an FM system let the instructor know ahead of time and plan to meet before the session begins so that you can show them how to use it.

 

What to do on the hill

 

One concern about skiing and children with hearing loss is that so much of the instruction occurs either behind or in front of the child, making it difficult for the child to see the instructor’s mouth.

 

“We started skiing as a family when J.Q. was 3 years old,” recalls Ms. DePaiva, “so my husband would ski with him attached with a harness. Once he was used to going down the hill we enrolled him in ski classes. We just reminded the instructor that he needed to speak to our son’s face if possible. It has all been a positive experience.”

 

Another option is to enroll your child in a skiing program right from the start. Ski hills today are family-oriented and there are great learn-to-ski programs available. One possibility is to enquire about adaptive ski programs.

 

“While we do open up our program to people with hearing loss, we very rarely have students that access the program,” says Pam Greene, Program Director of the Adaptive Sports Foundation located at Windham Mt, NY.”It seems that people with hearing loss don’t consider themselves disabled and don’t look in to adaptive sports programs.” However, adaptive programs can offer smaller class sizes and instructors who are familiar with the use of FM systems and the specific needs of children with significant hearing loss.

 

Get familiar

 

Make friends with people at the ski hill. Whether you live close to a ski hill, or are visiting one for the week as a family, make yourself and your child known. “It is always a good idea to check out a program before you start. Have your child meet with their instructor or try on ski boots, anything that can help them become more familiar with the process of skiing,” continues Ms. Greene. The Adaptive Sports Foundation provides a Getting Ready booklet (available under the resource section on their website, www.adaptivesportsfoundation.org). While it is not designed specifically for families of children with hearing loss, it is full of great information to help children prepare for their first time on the ski hill.

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Hearing Loss: By the Numbers

IMG_106515 months and 3 days: That is how old my son was when I first mentioned to his pediatrician that I wondered if there might be something wrong with his hearing. I know this because I was recently looking through his medical records, and there it was written in plain English. I had forgotten about those early concerns. In response to my questions about my son’s hearing the pediatrician gave me a what was meant to be soothing talk, “Don’t worry, he’s a boy. He’s a second child. He will begin to talk when he is ready.”

3 years and 2 months: That’s how old my son was when he is diagnosed with hearing loss. The pediatrician’s old wives tales about boys being late talkers didn’t exactly pan out. He is fitted with bilateral hearing aids. The speech language pathologist that evaluates him tell us that he is functioning at the language level of an 18 month old. His father and I tour special schools where children with hearing loss learn how to talk and to listen. We try to get the deposit back from the nursery school where we had already enrolled him, but they don’t budge. I guess non-refundable really does mean just that. Our world isn’t exactly turned upside down, only tilted sideways for a moment.

5 years and 4 months: That’s how old my son was when he graduated from the Clarke School for Hearing & Speech in Manhattan. Where he spent two jam-packed years with an amazing and supportive school staff, the likes of which he will most likely never see again in his school career. He talks. He listens. He tries to understand what is being said, but sometimes he is unsure of exactly what is being asked of him. He heads off into the world of mainstream education. And his father and I wonder how he will adjust moving to a school where he will be the only child with hearing aids.

7 years and 7 months: That’s how old my son is right now. He is in 2nd grade at our local public school. He is just the same as any other second grader, except for the silver receivers and green ear molds that adorn his ears. The children in his class like having the chair feet covered with tennis balls, and they get a kick out of the pass around microphone that is connected to his FM he uses in class. He is happy. He is a good reader, he loves math, and plays any sport that has ever been invented, and some that he has made up on his own.

18 years and 2 months: That’s how old my son will be when he graduates from high school. I can’t predict what the future will bring but I know my son already doesn’t fit so many of the statistics and myths that float around about children with hearing loss. Current education wisdom clearly states that the ages 0-3 are the years that are most important for language development. Those are years in which my son missed the most. But I am amazed at all that he has accomplished and I don’t see him slowing down anytime soon.

Parenting a Child with Hearing Loss? Look after your own needs first

women bonding“Look after your own needs as a parent, before you look after the needs of your child.” “Put your oxygen mask on first, and then help your child.” How many times have we heard these platitudes, only to shrug them off and get back to our work of raising a child with hearing loss?

Parenting a child with special needs often blurs the line between where our needs end and the needs of our children begin. We become focused on achieving 30 additional minutes of speech a week, or on having the insurance company pay for an FM system. Our frustration of the present becomes intertwined with the hope we have for the future and some days there are more grey skies than sunshine.

But for the past two days I took some time out to look after my own needs and was fortunate enough to be able to attend the Clarke Mainstream Conference in Springfield, MA. For two days I listened to incredibly passionate teachers and researchers talk about their work and how it impacts the education of children with hearing loss. I was entertained and inspired by Justin Osmond (yes one of those Osmonds!) as he talked about his challenges growing up as a child with profound hearing loss and the amazing work he does today in bringing sound to others. (Learn more about his foundation here.)

But one of the most powerful parts of the conference was the parent lunch I attended. It sounds simple enough – put out some sandwiches and iced tea for parents, maybe they will spend some time chitchatting. But it was something way beyond that! I didn’t get a chance to speak with every parent at the lunch, but the three other women I shared a table with were wonderful. The ages of our children ran the gamut from 3 ½ – 20 years old. In that brief hour that was set aside – we laughed, we cried, we marveled at each other’s strengths, we shared stories, we exchanged email addresses, and we created a connection.

Sometimes it feels as if we are raising our children in silos. Our child is often the only one in the school with hearing loss and sometimes the only one in the district. While our friends and family can offer us support and sympathy, they don’t truly understand. One conference session I went too talked about the importance of having your child connect with other children with hearing loss – because the barriers aren’t there – there is a relief in seeing other kids with hearing aids and implants. I think that is just as true for parents; there was a relief sitting down and not having to explain my child, everyone at that table already understood.

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A Conversation with Wendy Kupfer: How to Support Your Child with Hearing Loss

authorpic_wendyLast week I caught up with Wendy Kupfer, award winning author of the children’s book Let’s Hear it for Almigal. Wendy discovered her daughter Ali had hearing loss at around the age of 10 months (today Ali lives in D.C., where she is a social worker.) We spent time talking about school, hearing loss, and supporting your child.

KK: What was it like raising a child with hearing loss at the time you did in the late 70s? So much has changed now with the internet and the way we gather information.

WK: When we first found out about Ali’s hearing loss we were completely overwhelmed. We were living in Bucks County, PA at the time and like so many other parents of children with hearing loss we didn’t know anyone who had hearing loss. It didn’t run in either of our families. In fact, Ali’s hearing loss was due to the Cytomegalovirus (CMV) that I had contracted while I was pregnant. And yes, there was no quick trip to the computer to Google about support groups or information about hearing loss in children. We found names of organizations that we could right away too and AG Bell was one of them. This organization played a huge role in our lives and I am so thankful for them. In fact I recently wrote a thank you letter talking about how meaningful they were in our lives.

KK: Having been through it myself as a parent of child with hearing loss I know about the decisions and choices that need to be made (aiding, implanting, therapy) all during a time of great emotion. Can you talk a little about the support and choices that you made?

WK: Making any sort of decisions about your child is so personal and unique to each family, that there is no right or wrong answer to whatever approach you decide to follow through with. It’s really about what resources and support you can offer as a family. For us, Ali was not quite a year old when her hearing loss was diagnosed and we had a little bit more time to try an approach. The oral approach (listening and spoken language) made sense to us. Thankfully we were directed to work with the Helen Beebe Center in Easton, PA, which was about 90 minutes away from our house. Helen Beebe was very much a pioneer in the field of auditory-verbal therapy. Ali was taught to process language through her ears, with the help of her hearing aids, rather than relying on sign language or lip reading. It was very intense therapy and we are all very involved in this approach as a family. Ali truly thrived in this environment – once she started she kept going!

KK: That is so good to hear. I just wanted to talk a little bit about your involvement as parents in the therapy process. I know we have spoken about the importance of parent involvement and the impact that it has on children.What is your take on this?

 

WK: It’s not only parent involvement that is so important, but parent attitude as well. As a parent of a child with hearing loss I did everything that everyone else did. I had high expectations of Ali; I always expected the best from you. Right from a young age I projected that attitude that Ali could achieve whatever she wanted to achieve, I don’t believe that her hearing loss should hold her back. I have always advocated for Ali from a position of believing in her, because if you don’t believe in your child and their abilities, nobody else will.

KK: Is there anything you wish you had done differently?

WK: There is one thing, and I really feel strongly about it, that children with hearing loss very much need to meet other children who have hearing loss. I was so intent on having Ali fit in with the hearing world that I really shied away from my involvement with other kids and families who were also dealing with hearing loss. To make a long story short, Ali has worked towards connecting with the deaf culture. In high school she was able to take ASL as her foreign language requirement which led to a class field trip to the Florida School for the Deaf & Blind. This really opened her eyes to deaf culture and she actually went to school at Gallaudet University, which was scary for her at first because she is so oral, but she really enjoyed her experiences there.

KK: Ali received her cochlear implant as an adult. How has that adjustment been?

WK: Yes, Ali received her CI at the age of 29. You know adults tend to adjust differently than children, but she is doing great. She brings such graciousness to everything she does and I couldn’t be more proud of her!

KK Wendy, it was great connecting with you and I look forward to future discussions! In particular we will be talking again in November in more detail about your wonderful picture book Let’s Hear it for Almigal.

Family Mealtimes: What you need to think about when your child has hearing loss

a_family_eating_dinnerToday is the start of “Eat Dinner with Your Family” week – a nationwide initiative to remind parents that what kids want most at the dinner table is their family.

Research suggests that children who eat dinner with their families:

  • receive better grades
  • eat more nutritious foods
  • are less likely to engage in risky behaviors (drugs/alcohol/promiscuity)

All that is great, but of course, the importance of families eating together isn’t just about the food – it’s about taking the time to sit down together as a family and talk – share stories, discuss problems and dilemmas that occurred during the day, and talk about future goals and plans.

However, for children with hearing loss meal times can be one of the most difficult places to follow conversations. Take the time to think about what occurs during your family meal and what adjustments you can make. The following tips can help

What else is going on in your eating area? If you have typical hearing it’s easy to drown out a noisy dishwasher or a whistling tea kettle and focus on the conversation, but for a child with hearing loss it is difficult to tune out additional noise. Beware of background noises that are happening during a meal, which ones can you reduce (do you really need to eat with the TV or the radio on?) Ask your child which noises bother her during mealtime.

What’s filling your space Sounds likes to bounce around empty spaces and echoes and reverberations make it difficult to hear the gist of a conversation. Kitchens and other eating areas often have bare floors which can contribute to echoes. Will it help if you put tennis/rubber balls on chair legs? Is it possible to put a rug under your table (don’t be afraid of making a mess of your rug there are some great indoor/outdoor rugs you can use and the best part if you can literally take it outside once a month and house it down!)

Where can I sit? Think about where your child sits during meals. Shadows on family members faces, or light coming from behind the speaker can make it difficult for a child with hearing loss to focus on the speakers mouth if they are trying to lip read.

Mind your manners. Talking with your mouth full of food is not only bad manners, but it can also distort sounds that your child needs to hear. Remind other family members to finish chewing before they contribute to the conversation.

Who said that? Multiple conversations are difficult for a child with hearing loss to follow. Be aware of what conversation he is a part of and help him follow the speaker. Depending on the age of your child you can either ask the speaker to slow down, or your child can begin to advocate for themselves.

I’ll get back to you on that It can take a little extra time for your child think of an answer to a question, or to get her thoughts in order to share a story. Let other family members know that it’s okay to have a pause in the conversation and help your child with some prompts like: “What happened next?” or “How did that make you feel?”

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