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

 

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.