Posts Tagged ‘parenting journey’

The Journey of Acceptance

October 24, 2018

During a staff discussion, the topic of “acceptance” came up. The journey of raising a child who is deaf/hard of hearing is an intensely personal one.

Hands & Voices posted this question on our Facebook page.

Parents,

Tell us about your experience:

I realized that I accepted my child’s deaf/hard of hearing journey when__________________.

Here are the responses that were shared:

I realized that I was given the gift of being this small human’s mommy, and God had His own plans for me with this journey. It was about a week after she was identified with bilateral severe/profound sensori-neural loss.


 

When I was no longer angry! It took a long time to get there also, probably 7+ years.


I realized that I accepted my child’s hard of hearing journey when she answered audible questions in sign language. She also has Apraxia of Speech, so her ability to form verbal words is super tough.


I was young when I had my daughter 18, 19 when I found out her hearing loss. I use to blame myself, that I had done something to cause this. When I stopped blaming myself and realizing that she was extra special. We started signing when she was 5-6 months old. I accepted it, when I stopped punishing myself for it..When she was one she got implanted with cochlear implants and that’s when our real journey started. Reaching milestone after milestone. She started first grade this year!


I found a sign language book at the store at the mall (remember when they had them) and started teaching her myself. At that point, no one official accepted she was deaf. Later, we switched to cued speech. That was on us, too. It was a very rocky road before diagnosis (thanks, Arlington Hearing Resources!)


I let go of the idea of what a “normal” child should be.


I accepted it immediately so that I could move forward and educate myself for my child, as denial gives no benefit to anyone. However, I have experienced several evolutions of understanding and ways of guiding my child, since there is no one resource or guide that applies to all deaf/hoh, or their attitude towards deaf culture. It is ALL on us as parents, that’s for sure… Educators and deaf culture can’t come together, and it is a terribly sad thing.


Honestly, not sure if I have fully accepted it yet. Going on three years now. I am waiting for the day to talk about it without crying. Y’all give me hope I will one day be able to fully and truly accept it.


I realized that I accepted my child’s deaf/hard of hearing journey when I had connected with parents and families, deaf adults and providers to learn from and feel supported. Transformational learning can not be done in isolation.


When she became “okay” with it. She got her hearing aids in the 3rd grade and was excited. Until the 5th grade…seeing her struggle with self esteem and not socializing hurt me to the core. She is now 15…growing in self advocacy confidence is returning…she wears her aids with no problem and is beginning to make d/hoh friends thru the camps she attended this summer.


When I was told she was hard of hearing.  It didn’t make a difference to me.


Well I have a twin brother who is profoundly deaf. My oldest son, we knew something was up around 2 months old they didn’t do newborn screen then. I accepted it right away, maybe because I grew up with it.When I was pregnant with my daughter we were prepared either way she is fine. Then there’s my 9 year old, we knew the second I found out he was a boy I knew he would have a hearing loss just not sure how bad.He was miss diagnosed 2 times before it came back moderate hearing loss.He also had severe speech delay with it my oldest never had speech problems.


I realized I had accepted my child’s hard of hearing journey when I could tell our story to other parents and not cry, but smile because the journey had made us so much stronger.


When I realized my strong, intelligent, beautiful girl; full of personality, can do anything anyone else can. Straight A’s and headed to the 7th grade! Proud mama.


I realized that I accepted my two sons’ deaf journey when I made friends with deaf adults and learned that it was all going to work out. I now consider their deafness to be my greatest gift. I have grown in ways that I never dreamed were possible.


My son was diagnosed when he was three. H&V, you all are great, and helped us to understand what we were going thru. I miss you all .


When my child was able to ask for help via sign language (at 10 months).


My husband is partially deaf (50% without hearing aids, 80% with), so we always knew it was a possibility. For my daughter, after her hearing test at age three. She had already failed the newborn screening, and had had two inconclusive ABRs. My son was as soon as he was born. Failed his newborn screening, but does have better hearing than my daughter.


I realized that God had blessed us!


I realized I accepted my daughter’s Deah/HOH journey when I met and got to know happy, well-adjusted, self-confident & successful d/hh adults who were willing to share their stories & culture, and also connected with parents who were supportive & knowledgeable. This process of acceptance & honoring continues today as I get to experience her as a happy, successful, self-confident mother & professional who is bi-lingual/bi-cultural.


It took me like six years to accept that he was hard of hearing and in the seventh year, my girl was born with the same problem and for me it was very hard, she is 4 years old and the boy 10. and I think I have not accepted it completely, I still wonder why?


Me tomo como 6 años, aceptarque el tenia perdida de audición bilateral y al séptimo año nació mi niña con el mismo problema y para mi fue muy duro, ella tiene 4 años, y el niño, 10 años. Creo que no lo he aceptado completamente, aún me pregunto por que?


He was one day old and failed two newborn hearing screenings. God gave me this beautiful little soul and made him how he saw fit. It’s my job to join him on this journey and help him any way that I can. My baby can do ANYTHING he sets his mind to.


I had an official diagnosis.


I could mention it to other people without breaking down and bawling my eyes out. It’s still a tough pill to swallow but it’s getting easier, but I still wonder why it happened. Now I just worry about the bullying I’m afraid he’s going to receive growing up (kids are mean).


I just wanted to share with you about my hearing parents . My hearing parents wanted me to be like other hearing peers . She (my mom) wanted me to manage and communicate better in the hearing World. She wanted me to hear and speak better in order to communicate via hearing people . I understand and respect their wishes . I can not change their views and opinions . They’re my mom and dad …


EHDI (Early intervention) did not exist when my daughter was born. That being said, once we had the diagnosis I was relieved, but not surprised as there is a history of deafness in our family. We charged onward. My daughter is very strong, independent, proud, beautiful Deaf woman who dreams big!


I realized it when I began to meet other families with children who were both deaf and hard of hearing. Seeing how “normal” they were and how they did everything else hearing children do. Once I let go of feeling embarrassed, to be open about it. I’m so proud of my deaf daughter. I love educating people who ask me. It makes me feel empowered and honored to be her mama.  Plus, I’ve met the most amazing families along this journey and when I think about if it weren’t for my daughter I might not know any of them…wow. I am so lucky!


Right before our appointment where the audiologist confirmed hearing loss… (12.5 months) after 12 months and roughly 6 audiology visits, two ENT visits, and starting Early start a couple months prior, I realized how sad I would be if she was determined to have normal levels and we would be kicked out of the program we loved so much with all of our DHH infant friends. Def made it easier to face the other challenges that came our way.


I don’t know. When she got accepted to Gallaudet?
Seriously though, about a week after diagnosis. I come from a family peppered with Deaf people. I knew the old realities, but man, so much has changed.


I realized that I accepted my son’s hard of hearing journey when he began to wear his hearing aids without being asked to. When he began to realize he needed them, I knew it was a real deal!


…when a family member said “he won’t have to wear his hearing aid all the time, will he? Like in photos?”

…when others’ lack of acceptance becomes your moment of acceptance!!


I went to my first Michigan Hands and Voices conference and met so many others from infancy to adults who thrive each day. I knew that my son thrives in his own way.

 

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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

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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.

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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.

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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.

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Bridget Ferguson: Reflecting on Our Parenting Journey

January 16, 2015

ferguson family

Bridget Ferguson is the Project Manager for the Family Sign Language Facilitator Service. Her husband, Oliver, is a Visual Effects Technical Director and has worked on major films such as The Hobbit and Avatar. They are the parents of Zoe and Elijah and reside in New Zealand. Bridget shared her thoughts about parenting on her blog and gave permission to share it here: 

 

I’ve been reflecting on what, if anything, I would do differently if I had my time again as a mum of a new born baby. I vividly remember that overwhelming sense of excitement, fear, joy and exhaustion! I remember the day that it hit me that this little life was utterly dependent on us.

Our first child, Zoe, was born in 2001, at that time Wellington did not have newborn hearing screening. In a sense I feel fortunate that we did not have to contend with the numerous professionals, appointments and conflicting advice that often follows the newborn hearing screening. We had 15 months of just bonding and growing together as a family. Language was acquired in a playful way in our home and in the wider community. Our two children were born into a bilingual/bimodal home. I am hearing and my husband, Oliver, is Deaf. We have two children, Zoe is Deaf and Elijah is hearing, NZSL is their first language and by the time Zoe was identified via an ABR, she was signing in sentences!

Prior to having children I had worked as a sign language interpreter and a teacher of the Deaf. But my most rewarding and challenging role has been as a mum. All the book knowledge and experience of working in schools and in the community didn’t prepare me for the parenting journey!

One of the struggles we had early on, when Zoe was very young, was finding a community of families, using NZSL. We struggled to find deaf or hearing children with whom our children could play, interact and sign with. We relocated to Sydney Australia and found an amazing community of parents and children who had sign langauge as a language in their homes! This made a world of difference. Both of our children attended a bilingual pre school. Zoe then went onto a bilingual primary school in Sydney.

Even when we returned to New Zealand and no longer had the option of a bilingual education setting for Zoe, the thing that has made the mainstream schools more accessible has been having Deaf professionals involved in the school in a variety of ways and having a community of users who have made the effort to learn NZSL.
When I reflect on Zoe’s primary school years, the biggest priority in the mainstream schools has been friendships and social acceptance. There was often a greater focus (by the professionals) on learning goals and academic learning, however we found very quickly that if Zoe was not happy and was having issues with friendships then her academic learning was taking a back seat anyway. So it made sense to us to put the effort and focus into ensuring Zoe felt confident and comfortable at school.
Her final two years of primary school have been amazing. She has been at a primary school that has adopted NZSL as the alternate langauge for the years 5-8 students. This has created an environment where sign language is a language seen throughout the school not ‘just for the deaf student ‘.

The notion of inclusion has been made more of a reality via the provision of a professional educational interpreter. This has enabled Zoe to relax and learn alongside her hearing peers. And with the peers also having the opportunity to acquire NZSL, it has enabled Zoe to develop real friendships.

In our home we want to raise our children to know that they can do what ever they put their minds to, and to instill in them a sense of confidence and pride in their bilingual/bicultural identities. Oliver and I work hard to ensure that both children have access to NZSL and English. Within our bilingual/bimodal house there are a number of things that we do that I believe brings us closer as a family unit and adds more clarity to our communication.

For example:
Signing at the dinner table- when seated around the table for dinner, NZSL is the language for conversations. This is because it is accessible to all of us and ensures that no-one is left out.
For families who are starting to develop NZSL in the home, this can be a great way of developing confidence and practice in the language. The conversation is often predictable and provides a safe setting for the family to all give it a go.

Storytime in sign- bedtime stories were always signed to Zoe. For Elijah he would choose particular stories to be read in spoken English and others he preferred to have signed to him. Again for a family starting out with developing NZSL, learning a particular story, rhyme or song, can be another way of developing confidence in the language and bonding with your children.

Signing around the child – I believe it is important that deaf children see conversations around them and that they are aware that there are many users of NZSL – both Deaf and hearing. It is important that parents take time daily to have conversations in sign language, not necassarily with the deaf child, but with hearing children and each other. This provides the deaf child the opportunity to ‘over hear’, ask questions and learn about the world around them. In the same way that hearing children pick up information incidently from conversations around them.

Seeking out Deaf examples- we are always exposing our children to Deaf examples in all walks of life. There are so many benefits to this: for Zoe it provides her more opportunities to have greater aspirations and a variety of role models. For Elijah it reiterates the validity of his first language and a sense of pride that he is connected to the Deaf world. For the teachers working with Zoe and the general hearing community, seeing successful Deaf people in a variety of roles broadens their understanding of what it means to be Deaf and raises their expectations of deaf children.

As parents there is nothing we want more than happy healthy children. We aim to have an environment that enables our children to communicate with us about anything. I love that Zoe and Elijah can sit with us at the end of a day and tell us about the highs and low of their day.

I am in awe of Zoe’s perseverance. As inclusive as her school is she is still faced daily with a predominantly hearing environment and it is exhausting at times. There are many days when she just wants to be in a Deaf environment and access information directly (not via an interpreter). Her experience this year attending the WFDYS children’s camp at Gallaudet University, was incredible. This was her first time staying away from us for that long. She found it challenging but again her perseverance and courage served her well. She has connected with deaf children from all over the world. She has met Deaf leaders and seen parts of the world that have so much meaning to her and have inspired her to strive to get back to Gallaudet University in the future.

For families who are beginning to develop NZSL I believe it is important that they feel connected and comfortable with the language. This happens by having a connection to a community of users of the language. Having access to Deaf adults, hearing signers, deaf and hearing children who use NZSL, means that families can relax and enjoy learning NZSL alongside their child. This also provides numerous opportunities to practice and refine their use of the language. Although Oliver and I were bilingual before having our children, it was having access to a community of signers at a variety of ages, that made a huge difference to how our children acquired the languages.

Our parenting journey over the past 13 years has been a roller coaster ride that has seen us relocate to different cities in NZ and even to Australia, in search of what we wanted for our children. I have no regrets and I am thankful for the lessons learned with each move we have made. This year we have entered the ‘teenage’ years I am again feeling that overwhelming sense of fear, joy and exhaustion…but most of all excitement about what the future holds for our bilingual/bimodal children!

Read the original post on Bridget’s site: Reflecting on Our Parenting Journey So Far

Deaf Aotearoa in New Zealand

 

 

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