Posts Tagged ‘parenting advice’

Jessica Stern: JUST GOOGLE IT

August 28, 2017

“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone but that you’re not really any different from everyone else.” -Maya Angelo

IMG_1638

In the 90’s, there was no Google website to go to when you wanted to search for tips on teaching your deaf child how to speak. There was no online forum where you could talk with other parents in your shoes in order to find out what worked for them. There was no app on your phone to help teach you ASL. Parents were left to their own resources and gut instincts, they were left with vague recommendations from their audiologists, and they were left with hand scribbled landline phone numbers of someone that had a deaf child.

My parents were in those shoes of not knowing what laid ahead for them. They had just been told that their 15 month old baby daughter was profoundly deaf in both ears as a result of Meningtis. They lived in rural Minnesota in a town of 1,200 people. The only deaf people in town were 80 years old or more. My parents desperately needed a family to empathize with and to relate with the issues they were going through.

The moment that gave them hope was getting a phone number for a couple in the Pilot Parent program. Dennis and Deb were the parents of a girl who also had Meningitis as a baby, and had been deaf for about 5 years. This family was the Morrows and they were our saving grace. Over the next decade, our moms became very close and learned to rely on each other. There were many phone calls to ask:

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

With everything they shared, the most important thing Deb told my mom was, “You will meet a lot of experts that will tell you what to do, but remember, the most important expert in her life will be you.” We were one of the lucky families, not everyone was able to find this type of guidance.

CHALLENGES BEYOND THE FRIENDSHIP

No matter the motherly advice my mom received from this family, there was always still a lack of professional advice based on real life cases. One of her biggest struggles was that she was not sure what accommodations the school system was legally required to offer. In an effort to know more, she joined a state board in order to surround herself with others who knew more.

With this support system, she was able to understand so much more when it came to IEP’s and services. In fact, with the expertise of other board members, I was the first D/HH child in Minnesota to have the public school system help financially with an interpreter within a private school. I did not stay long at the parochial school but it was something that my mom’s hard work and research helped make happen.

A significant lesson that my parents learned right off the bat was that you can and should try every tool out there. Each person is different and each person will benefit differently. Instead of looking at different routes as successes and failures, they looked at them as crossing out the items that didn’t work and keeping the items that did. There were many things that worked for us, and even more things that didn’t.

“YOU WANT THREE QUESADILLA MEALS!?”

We had a rule they made when we went out to eat because dining out was a chance for my parents to teach me how to be assertive. This story often makes my parents seem like they did not care, but it is the opposite… They cared so much that they struggled to watch me go through the situation of dining out. They started me with this practice at a very young age.

When it was time to order, whether it was McDonalds or Perkins, I was left to fend for myself and it would be a conversation between the waitress and me. If questions were asked by them, I had the chance to smile and nod or I had the chance to ask them to repeat themselves.

IMG_1634

For many years, my dad did not order a meal for himself because they knew with certainty that I would not get the food I ordered and he could eat my food. In fact, when I was 16, I accidentally ordered three quesadilla meals instead of three quesadillas. That was a $48 mistake…

As a child, I was the picky eater who would order a cheeseburger with no mustard, no onions, and no pickles. After smiling and nodding at the clerk, my order would come with extra onions, extra mustard, and pickles. My mom would just hand me more money and send me off for a second chance.

For years it seemed like I would not learn, but slowly and surely I began to ask the waitresses to repeat their questions, I would tell the cashier that I was deaf, and I would repeat my order back if needed. Now, as a 30 year old woman, I am confident going through a drive through and telling them I will see them at the window to give them my order.

“I’M A BARBIE GIRL, IN A BARBIE WORLD”

Music was one of those things that we struggled with trying to figure out. When a kid with hearing aids wants to learn lyrics to a song today, it’s easy to go to MetroLyrics or Lyrics.com. A song can be played on repeat until the feeling of the beats becomes natural and the words become second nature.

I grew up in the days where radio was the source of music and songs could not be played on repeat on iTunes or YouTube. There was no way to look up lyrics beyond learning them from sound.

In true family love fashion, my parents and sisters came together to make music work for me. My older sister, Dani, would sit in the car and record the radio to a cassette drive. Then, my mom and dad would listen to the cassette and write down the lyrics on a sheet of paper. They would have to listen very carefully, mulitple times, in order to make sure they were on track with the words. To this day, my mom always laughs and says that no grown man should know the words to “Barbie Girl” by Aqua.

There are going to be challenges and there are going to be solutions. The solution might not be ideal, but there is almost always a way around it.

IMG_1632

THE FUTURE IS BRIGHT

If there is any advice I have for parents, it would be that the future is bright. There are so many opportunities out there for support and resources. I would be confident saying that my parents would be jealous of the options out there today as you begin this journey with your D/HH child.

Take advantage of everything you can get your hands on. Go to the family camps, try out the different technology options, follow blogs of those who have gone through this already, and never set limitations for yourself or your child. And if all else fails, at least you have Google, Siri, and Alexa to ask for help.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Different Perspectives on Raising a Deaf Child

November 3, 2015
Bill Kolb, Irene Kolb, Leigh Kolb, Rachel Kolb

Bill Kolb, Irene Kolb, Leigh Kolb, Rachel Kolb

Rachel Kolb is a Stanford graduate and Rhodes scholar who is currently pursuing a PhD in English literature at Emory University in Atlanta, GA. Rachel was born profoundly deaf to hearing parents and grew up bilingual, using both sign language and spoken English. In this guest blog post, Rachel and her parents, Irene and Bill Kolb, give their respective perspectives on how their family navigated the complexities of communication, education, and personal development, especially during the early years of Rachel’s life.

 

Q: Briefly describe your family’s journey with deafness and with communication. How did you, as parents or as a family, make the decisions you did?

 

Irene: The day after we received Rachel’s diagnosis of having a bilateral sensorineural hearing loss, we went to the main library and checked out every book available on sign language and deafness. I learned that the biggest window of opportunity for language acquisition is from birth to three years. We started using signs that same day and within a few months, Rachel was communicating to us with baby signs.

This was the year that cochlear implants were approved for children by the FDA and we were told she was a candidate. We did not know if Rachel would grow up to self-identify as Deaf. We chose not to pursue cochlear implant surgery for her because we were sensitive to the message it may send, that she was not okay being deaf. The most profound book I read was Deaf Like Me. With that book, we came to the early realization that Rachel may never learn to hear or speak, even with a cochlear implant, but we could learn to sign. And who wouldn’t want to have open communication with their child? The journey continued to unfold, but we didn’t really know where it would lead or how we would get there.

We as parents continually learned new things and let Rachel try new things. We enabled Rachel’s interests and passions, and we made educational decisions on Rachel’s behalf. That’s what parents do: set the path. We chose to send her to a preschool for the deaf and then mainstream her with an interpreter in elementary school. She attended a private school, with an interpreter and as the only deaf student, from sixth through twelfth grade. We never considered sending her to a residential deaf school because we felt children need to live with their families. Rachel being deaf is not more heavily weighted than her identity of being part of our family. Going to college was simply an accepted family conviction, not an option or a mere possibility. By that time, it was Rachel’s choice on where to apply for college and what she wanted to study. We had set the path; the rest was all up to her.

 

Bill: We have two lovely girls that we are truly blessed with. I believe Irene is the one who set the path forward for Rachel’s journey. Irene is the one who would read everything available on a topic and then ask me for my input. After that, we would march forward with a new plan. She is a remarkable individual who helped shape not only Rachel’s future but helped me make informed decisions.  

Right after Rachel was diagnosed, we were placed into a New Mexico state-sponsored program called Step-Hi. People from this program would visit our home regularly and give us important information and services. The initial visits were very basic, and taught us things such as how to clean ear molds, change hearing aid batteries, and so forth. Then during one visit the individual brought a record that gave me, as a hearing person, an insight to what different levels of hearing loss sounded like. The record repeated a story over and over again, and each time the narrator would drop certain frequencies until the recording lost all frequencies – that is, let me hear what it sounded like to be profoundly deaf. This recording really hit home with me. Going forward, I decided I would learn as much as I could about how to communicate with my precious daughter.

We enrolled in sign language classes that were offered over lunch at our workplace. We went to the local university and enrolled in continued education sign language classes. We obtained as many sign language books and videos as we could and practiced with each other and with Rachel. We also decided we would not only communicate by sign but also with voice. If you were part of the family, signing was not an option. It was a way of life. Written language was also a way of life. We used 3”x5” cards to label most things in the house with their names. We also sat at night and signed (read) books to Rachel. Before long she was reading better and faster than I could, and she soon told me (in not so many words), “Get lost, you’re too slow.”

I believe that if a person is going to be born deaf, this time is much better than any other time in history due to the evolution of assistive devices such as hearing aids, text messages, closed captioning, Skype, and so forth. When Rachel was diagnosed, hearing aids were worn on the chest and the batteries were the size of a car battery – well, not really, but they were enormous. Technology was rapidly changing, which made it hard and expensive to keep up with. But we made an early decision as parents that we would try to keep up with the latest in technologies for the deaf and hard-of-hearing. We investigated and pursued options for hearing aids and other technologies to best meet Rachel’s needs, and I believe that also made a difference.

 

Rachel: As I’ve gotten older, I have appreciated more and more the effort my parents put into getting the right information and into making decisions on my behalf. Most important, for me, is the decision they made to learn sign language and to enable my bilingual communication access. I have met too many deaf individuals who feel like they cannot communicate with their hearing family members because their family does not sign. Having a family that signed and that worked to provide language access for me gave me a sense of confidence in myself, even when things got challenging. With my family, I was never just deaf; I was a fully contributing member of the family, and my parents’ high expectations enabled me to learn and to succeed in the ways I wanted.

I also appreciate that my parents recognized that it was important for me to have access to the deaf community, even if I was mainstreamed. I went to a deaf camp in Aspen, Colorado every summer for many years (and went for several winters, too). Although most of my friends are (and have always been) hearing, I’ve been able to find and keep in touch with deaf friends from many different places. Trying to be involved in both deaf and hearing worlds is not always easy, but I think my parents recognized this early on and tried to give me as many tools and as much access as they could to both.

 

Q: What was the most important thing you learned along the way?

 

Irene: I learned and was empowered by the fact that no one, not even the professionals, knows what is best for a particular family or child. Listening to the advice and reading up on how to raise a deaf child was just part of the critical thinking that led us to decisions, and we never felt we had to go along with what one side or the other said. We could make our own decisions, based on our family situation and our values. We certainly chose a different approach than many families, and that is okay. One size does not fit all.

 

Bill: I learned that family is the most important thing. Through thick and thin, family will always be there for each other. If you put a little effort into something, the rewards will surround you tenfold. I also learned to let my children explore the world and follow their heart. Rachel has mastered her passions through following her desires.

 

Rachel: I learned how to enable and advocate for myself, definitely not as something that happened overnight but as a result of my parents’ decisions and the expectations they had for me. They made it clear they would always be there for me, but also made it clear that there were some things I could only do or decide for myself. Learning how to take control over my own decisions and become my own best advocate has been a process that has taken years, but thanks to my family’s involvement I feel like I’ve gotten there.

 

Q: Were there any parts of the journey where you disagreed about one thing or another? What parts were the most challenging?

 

Irene: I can’t think of a time when we disagreed. I do think that at times Rachel wondered why we chose a mainstream situation instead of putting her into a school with other deaf students. A very challenging aspect for me was the grief I felt. It’s not that I didn’t love and appreciate Rachel. Having a deaf child was not what I had expected. A new, difficult situation would arise for Rachel, and I would grieve. Bill helped me realize that not every difficult situation was related to her deafness. Over time grief cropped up less and less, but it was a very tough emotion to process, especially at the beginning. Bill and I usually took turns being in a grief funk and luckily it was not often that we were in a funk at the same time. The emotional toll of having a deaf or other special needs child is something I don’t think people talk about enough, or one that the professionals appreciate from a personal standpoint.

 

Bill: I also can’t think of a situation where we disagreed. I think the most challenging aspect for me was being concerned about Rachel’s emotional wellbeing. When she was a young child we would attend social gatherings where all the other kids would be playing and talking. Rachel would end up in an isolated part of the house reading a book. This just wrenched my heart and there was nothing we could do about the situation. Nothing could be said or done that would make others accept and include her in their games and time together. When faced with groups of people, we would try to sign or at a minimum explain what was happening, but often we failed to keep Rachel current with the situation. I am not sure what I would change or how I could make it better for her if I had to do it again. Sometimes we would visit deaf individuals to give her the opportunities to be with other deaf people, but that then put me in a situation where I often could not understand the conversations.

 

Rachel: I’ve come across stories of deaf and hard-of-hearing people who resent the decisions (especially communication-related decisions) their parents made on their behalf. I don’t feel like this has happened to me, maybe because I’ve never felt like my parents dropped me in completely over my head, or did not understand the repercussions of their decisions, or did not empathize with what I was going through. Some things along the way, such as being mainstreamed or going to speech therapy, were certainly frustrating and difficult. I’ll be honest, I did not always enjoy being surrounded by hearing peers, many of whom did not make the same effort to communicate with me as my family did. But my parents gave me their full support, and I also was conscious that their choices gave me benefits I would not have gotten otherwise, such as access to an incredible education. Growing up, my family was my refuge: they were the ones who enabled me, who were always there, and who let me be fully myself. I won’t deny that it was very difficult at times to grow up in a hearing world, but with where I am right now I also can’t say I would have changed very many of those tangible decisions, based on the options we had.

 

Q: Who was your most valuable mentor?

 

Irene: Rachel’s very first speech language pathologist was very instrumental in helping us through those early days. Beginning at six months old, Rachel started going to speech therapy twice a week for years, and continued going once a week in middle school through high school. I would often talk to the SLP after the sessions. That was therapeutic for me and helped shape my ideas of how to educate a deaf child to function in a hearing world, even though we did not choose the cochlear implant route, which must have seemed odd, especially since this SLP was the director of the cochlear implant program. She supported our choices. And she helped me to formulate the ethos of never putting limits on Rachel just because of her deafness.

 

Bill: I had several mentors at work and church who guided me with family concerns. There is one individual who was, and still is, inspiring when it came to guidance about deaf life. My friend Roger is a man with a progressive hearing loss who became immersed in the deaf community later in his life, and who offered sign language classes to many people. We often met for coffee on Saturday morning to catch up on life and to support each other. He taught me so much about deafness, deaf culture, and service to others, and not only offered advice but would also lend an ear when needed.

 

Rachel: I can’t pinpoint one mentor, but I do remember a number of counselors and staff members I met at deaf camp when I was young who gave me a positive image of how to be deaf in the world. I think it’s very important for young deaf and hard-of-hearing children to have access to older deaf role models. I’m still meeting deaf role models in a variety of places as I move into adulthood, and their influence on me is huge. (I say this, even if I would add that I have had many positive hearing role models, too.)

 

Q: What piece of advice would you most like to give to hearing families with deaf or hard-of-hearing children?

 

Irene: It’s important to be mindful and intentional about communication with a deaf or hard-of-hearing child. They receive limited incidental learning by overhearing what’s going on around them. So do take time to fill them in, even when it means explaining things that seem like they should be obvious. And be as inclusive as possible so the incidental becomes the intentional.

 

Bill: Treat them as you would any other family member and include them in everything and anything. Learn as many communication skills as you can, and apply them as early as possible. The first few years of your child’s life are the ones in which they learn the most. And last but most important: love them daily, and it will be rewarded in many ways.
Rachel: Communication is key, and so is being inclusive and intentional. Find out all the information you can, not only from professionals but also from people who have lived it. Engage with a variety of communities and give your child options, based on what works best for that child and for the family. Discover your child’s passions, the things that light his/her imagination on fire, and enable them.

Rachel speaking at a TEDx event:

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail