Category Archives: Mom’s the Word

Melanie Ribich blogs form a mom’s perspective.

The “Poetry” of our Parent-Professional Partnership

Mom's the Word: Pamela Aasen

I often wonder if the professionals that work with our children really know the impact they have on our lives.

I have two boys with bilateral cochlear implants. Within the cochlear implant world, I have been so fortunate to work with therapists, audiologists, social workers and doctors that have treated my children like their own. All these professionals played a role in guiding my husband and me on the journey of helping our boys with hearing loss to hear, listen and talk.

The skills taught to me by the professionals who worked with us have become invaluable and will be with me for life. The team all made their appointments fun and through them I learned how to help my sons without it seeming like I was doing “work”  I think of them often and their words and methods are close by when I need them.

A few examples come to mind:

Recently, one of my sons asked me what it meant to ‘not be able to hit the broad side of the barn’. I knew what to say and do to help him understand the idiom without it seeming like a lesson. The boy’s Auditory-verbal therapist and Teachers of the Deaf/Hard of Hearing have provided me with those tools to help my boys improve their speech clarity or language without them feeling like they’ve made a mistake.

Their audiologist made MAPping sessions enjoyable. She helped them to realize that they are key partners in the cochlear implant adjustment process by asking them questions about their hearing abilities and needs. asking for feedback during MAPping sessions, and involving them in any decisions regarding management or recommendations. Now, the boys, themselves, will suggest when they think they need to see the audiologist and can effectively advocate for their hearing needs.

They couldn’t wait to see their ENT as they looked forward to his magic tricks.

A trip to their social worker was a great opportunity for them to talk about themselves, reflect upon and feel proud of their accomplishments.

Occupational and Physiotherapists made their exercises fun and helped them develop a love of physical training so that they look forward to it and have made it a part of their daily lives.

Every member of our “professional family” was more
than someone who 
worked with my children once a week.
I know they will always be there if and when I need them.

Pamela and her sons

I am blessed to have found a group of professionals that have become a part of our family. This does not happen automatically. There were many things we had to consider when we were looking for the “right” professionals. Along with wanting the best , we needed to customize the team to meet the needs of our family. It was important to me that the boys enjoyed their various therapy sessions and looked forward to going rather than feeling like it was work and having them resent that time. I couldn’t do it alone. I knew that my expectations and my approach would influence the relationship my kids had with their many therapists.

About a year ago, my husband and I had to make a decision whether or not to move our family away from all that is familiar and comforting. It was almost unthinkable and our decision to leave was incredibly difficult for many reasons. We would be leaving our professional family, our friends, and our own extended family members who had been a huge part of our family’s journey.

Recently, in our new home, I had a moment that made me realize that the professionals will always be a part of our lives because they were instrumental in who my children have become and who they will be in the future.

My oldest son had an assignment for his Language Arts class that required him to read the poem “Still Here” by Langston Hughes.  After he read it, he was asked to think of a time when he was faced with a challenge and choose a line from the poem that would relate to that moment.

First, he said to me, “But Mama, I can’t think of a moment when I was faced with a challenge.”

Well, I was blown away.

You see, both he and his brother have Usher Syndrome Type 1. Along with being born deaf, he has problems with balance and he is losing his vision. To think of all the years of therapy and the challenges he has faced in his young life, I couldn’t believe he couldn’t come up with one challenge to write about.

At that moment, however, I felt so profoundly grateful for all the people who had helped him face his challenges along the way. My son loved visiting his auditory-verbal therapist, occupational therapist and physiotherapist, the hearing health professionals of the Cochlear Implant Program, and the vision health professionals of the Department of Ophthalmology and Vision Sciences. He never really thought that these appointments were a hardship in his life; he enjoyed them immensely. Those people projected the attitude that anything was possible for my sons. That attitude was infectious and my sons caught the bug.

So, next I had to convince him that he indeed, had faced challenges and I talked to him about his cochlear implant surgeries, the MAPping appointments, the therapies to address his skills in balance, listening and spoken language, and finally the appointments for his eyes and vision.

“But Mama, I don’t take them as challenges,” he responded.

So then I explained to him that other people would think they were challenges so he could talk about any of those for his assignment.  He seemed relieved that he would have something to write about but was still a little perplexed about how to begin.

He then had to find a line in the poem that would relate to him.  I read the poem to him and he chose the line, “But I don’t care!” because he thought it best reflected how he felt about his challenges.

Then he was ready to do his assignment. It was the end of the day and he was fatigued, even though he has many accommodations provided at school.

Here is his assignment entitled, But I don’t care!

Life has given me a lot of challenges. Some I was too young to remember, but I don’t care.  I have always needed to use an FM System since I can remember. My eyes started to affect the way I worked in school when I was in grade 4. I have a lot of things that make me different, but I don’t care. I have always been thought of differently than normal people, but I don’t care. I have a lot of challenges that I will face in the future, but I don’t care. I choose to live my life the way I want it to be. I will always work hard to do the things that I want to do. The only thing that will ever really stop me is my disability, but those are for reasonable reasons like safety. But, I don’t care. I will find other things to do.”

As I read this I thought of everyone who had been a part of his life and how everyone has contributed to this view he has of himself. These people have been an important part of my family from the time my children were born.

The professional members of my family were all invested in the process of helping me and my husband nurture our boys into brave, strong, confident children, who would overcome all the challenges they face, with dignity and determination.

Many people have asked how we have adjusted to our move and I think my son’s assignment answers this question beautifully.

I was so worried that he would have difficulty being around new people who hadn’t grown up with him and been used to his differences.

I am not worried anymore.  He is not worried and he will figure it out as he goes along.

This is what I want everyone who has ever worked with him to know.  This is the child they helped me raise. There are still many years to go but he has an incredible foundation to build on.

‘Thank you’ just does not seem like enough.

My Top Ten Tips for Parents:

  1. Determine desired outcomes for your child and choose the intervention approach and professionals who will help your family achieve them.
  2. Clearly state the family’s goals and expectations to every professional involved, so everyone is on the same page.  At the same time, be open to new ideas.
  3. When visiting a clinic, walk its halls, saying hi to everyone on each visit, not just the professional being seen that day.
  4. Turn appointments into an adventure and plan something fun to do that day after the appointment, especially if you are traveling.  If an appointment that is close by, get a special treat afterwards.
  5. Give respect if you want respect back.  Be timely and polite, not demanding.  Also, be personal and ask about family.  Encourage your child to do the same.
  6. Inform professionals of the extra-curricular activities in which your child is involved enabling them to develop an intervention plan that can be incorporated into those sports/activities. Professionals may also chose to use extra-curricular themes in their therapy plans.
  7. Include and involve school professionals in the intervention process by sharing goals and expectations.
  8. Share important events/successes/accomplishments with each member of the intervention team, helping the professionals get to know your child.
  9. Help your child develop self-advocacy skills by having professionals direct questions to the child from an early age. Make the children the focal point of appointments – after all, he/she know themselves best.  Also involve your child in his/her ‘Identification, Placement & Review Committee’ (IPRC) meetings.  This will help your child gain confidence and greater understanding of his/her strengths and needs.
  10. Become involved in professional training, advocacy and fundraising organizations focused on your child’s needs. This will further develop the child’s and family’s self-advocacy skills.

***
We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://soundintuition.com/blog/pam-aasen-the-poetry-of-professional-partnerships), as being the originator of the content.

What do parents value most about their experience with auditory-verbal therapy and education?

Melanie Ribich short bio

I recently had the opportunity to read through 101 Frequently Asked Questions About Auditory-Verbal Practice edited by Warren Estabrooks. It was fascinating to me as a parent to read what professionals from around the world have to say on a wide variety of topics relating to Auditory-Verbal Practice.

One article that I found particularly interesting was the response to the question What do parents value most about their experience with auditory-verbal therapy and education?

In their response, Terri Cohen-Johnson and Marguerite Vasconcellos wrote that in general, parents value the umbrella of support that auditory-verbal practice provides.  Parents/caregivers appreciate:

  • the emotional support they receive from their child’s therapist,
  • the opportunities to observe, learn and practice the techniques and strategies that can help their child learn to listen and talk,
  • the boost in their confidence they experience as a result of being included as a key members of their child’s auditory-verbal team.

As a parent who also went through the auditory-verbal practice experience I wholeheartedly agree with this response and thought that I would share my personal experiences as they relate to this response found in 101 Frequently Asked Questions About Auditory-Verbal Practice.

We started working with our auditory-verbal therapist when our son Noah was four months old. At that time our family knew very little about hearing loss.  We found ourselves trying to balance the needs of all of our children — our two year old daughter, Noah and his twin brother — while dealing with the diagnosis of Noah’s hearing loss. I remember it as being an overwhelming and extremely exhausting period of time. My husband had gone back to work and I was home with the children.

I recall worrying: How I would manage Noah’s equipment? What about the constant ear mold fittings? How would I find childcare that would allow for all the audiology appointments? How was I to keep the hearing aids in his ears when he seemed to take them out fifty times a day? Why we were continuing to do therapy when it seemed like he wasn’t hearing a single sound we introduced to him?

Our auditory-verbal therapist began coming to our home every Friday morning and I had no choice but to show her who I truly was. There was often no time to clean up the dishes in the sink, put away the toys or even look presentable. It was a time when I felt had little control over what was happening in my life. After a number of weeks, I found myself beginning to look forward to those Friday mornings. I discovered that the therapist was helping me address the numerous worries and concerns I had.

Despite their best intentions, my friends did not truly understand what I was going through but our auditory-verbal therapist seemed to be empathetic. She was emotionally supportive in a way that no one else, at that time, was and that support encouraged me to go on.

The more I felt supported, the more eager I became to learn.

During those Friday morning sessions I learned there were specific things I could do for my child to help him learn to listen and talk. The therapist demonstrated these skills through play activities and then passed the activities over to me so that I could practice those skills with her support and guidance. Every time our therapist modelled a song in a session and then said, “your turn Mom”, was a way to push me to the forefront. It was uncomfortable at first, but the more I did it, the easier it became. That seemingly small part of a sixty minute session is the reason I am now comfortable in IEP meetings, know how to find the best people to work with my child and am unafraid to ask for whatever will help my child learn in his mainstream classroom.

Melanie, Noah and his teacher reviewing his progress in school.

Melanie, Noah and his first grade teacher reviewing his progress in school.

The more I learned from my auditory-verbal therapist, the more confident I became in my ability to manage everything from ensuring Noah’s hearing equipment was appropriately selected, fitted and maintained to navigating our insurance plan so Noah could benefit from the services/equipment he needed. I learned to create an ideal and positive listening environment in my home.  I gained confidence in managing Noah’s hearing needs.

Auditory-verbal therapy taught me that I was the case manager for my child. We have an entire team of people who work together for Noah. It used to be just Noah’s therapist and audiologist but now includes a teacher of the deaf, an educational audiologist, regular education teachers, and even our school principal. I believe that this group works best when the parent is the one who links them together. I know my child best and therefore I am truly the one who is going to do the best advocating.

Auditory-verbal therapy became a way of life, not an hour on a Friday morning. I was guided, coached and eventually expected to play the role of “therapist” for my child. And I did. Noah progressed and less than three years later was discharged from therapy.

Because I felt supported in the beginning,
I was perfectly set up to blossom into a parent who was empowered.

Being empowered, in my opinion, is the greatest gift that auditory-verbal therapy gave me as a parent.

**

101 Frequently Asked Questions About Auditory-Verbal Practice edited by Warren Estabrooks.

We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://soundintuition.com/blog/what-parents-value-most-about-auditory-verbal-therapy), as being the originator of the content.

Do I need an AVT therapy room in my house?

Melanie Ribich short bio

Two of the questions I used to ask myself was, do I need to set up a therapy room in my house? How often do I need to sit down and do therapy with my child?

Elizabeth Rosenzweig of Cochlear Implant Online wrote, “in Auditory-Verbal Therapy, parents come to center stage to play a key role in the show.”

As a mom, I realize that active parent involvement in the therapy process is key to my son’s success and came to understand that was crucial for me to learn how to be my son’s pseudo therapist. Even with the best therapy, one hour once a week was not going to be enough for him to develop age-appropriate listening and spoken communication skills.

I have to admit, that although I loved the idea of being in charge
of my son’s progress, I was pretty worried during the early stages
of my son’s auditory-verbal intervention.

I learned that children with hearing loss need to hear a word or phrase three to four times more often than children with typical hearing before they master it receptively and expressively. I learned that 95% of a child’s receptive and expressive prowess is gained through overhearing adults engaged in conversational exchanges at extended distances.

Prior to cochlear implants, my son couldn’t hear a thing with his hearing aids. How was my son going to overhear my husband and I talk if he couldn’t hear? How was I going to do all that I needed to do, without replicating exactly what our therapist did with Noah every week when she came to our home?

AVT sessions do not consist of the therapist simply disseminating information, but rather, it’s an hour of therapist demonstration and parent practice with the purpose of enabling parents to feel confident using techniques and strategies that encourage the development of spoken language through listening. Auditory-verbal therapists understand that therapy is a process that does not end when their hour does. They guide and coach parents in creating and maximizing listening and spoken learning opportunities within their daily routines.

How was I ever going to find the time, resources,
and creativity to replicate what my therapist was able to do
every Friday morning in our living room? I felt that I had to
set aside specific time to “do therapy” with my son.

Or did I?

It wasn’t long before I learned that my world is my son’s oyster of listening and spoken language opportunities.

My auditory-verbal therapist emphasized that my son’s world (e.g. home, car, grocery store, apple orchard, etc.) is the most natural place for him to learn spoken language through listening.

I was reminded that my husband, my daughter and Noah’s twin brother are Noah’s primary spoken language models. I learned that we, as a family unit, know my son’s skills and interest the best.

The Auditory-verbal therapist taught me how to elicit a response from Noah. I learned to wait, pause and to allow him time for him to process the information he heard and to answer for himself. The therapist guided me though typical developmental norms in listening and spoken language and with her help I learned what Noah needed to learn each week. It was up to me to teach him what he needed to learn.

I quickly learned that it’s not practical or convenient (nor is it natural) to have a specific time during each day to “do therapy.” I learned that I didn’t need a therapy room in my house. I learned that every waking hour consists of golden opportunities that will enable my son to develop listening and spoken communication skills. Every hour of every day in the life of our family became the “real therapy session” as opposed to the therapy session in the therapist’s office or our living room.

The “real therapy session” involved anything and everything.
My husband and I could do it any time, any place. It was easy to
involve our other children in the activities we planned.
We quickly saw that all three of our children benefitted, not just Noah.

When my boys were very little I used to walk them around our neighbourhood and narrate as I walked. I would comment on the trees, the weather, the birds, cars, airplanes, anything I saw that I could talk about and point out to them. When the weather was cold, I took them to a local mall and did the same thing. I became very good at narrating while I folded laundry and cleaned the kitchen. Narrating mundane tasks is therapy. It is real life language. Any opportunity to hear rich language was one I took advantage of.

We went to the library almost every day. I found that the more books that I read, the better Noah’s attention span became. Initially, Noah was only able to listen for just a minute or two. Now at six years of age, he is a bookworm whose appetite for listening to a story seems endless.

Not only did children’s books provide the perfect opportunity for
grandparents and other family members to bond together with Noah,
but they also served as conversational starters.

Reading another copy of the book that was introduced by our therapist during her therapy session was also something I did repeatedly. For example, Noah and I read “The Carrot Seed” at home after it was introduced during a therapy session. We then bought carrot seeds and planted them in our garden and watched them grow. We bought carrots at the grocery store and peeled and chopped them in the kitchen. We ate carrots for lunch and dinner. We even baked with carrots. The therapy session was the springboard to the real language experience that happened in Noah’s everyday environment.

I learned to make homemade “experience books” which became great conversational starters. They weren’t anything fancy as I’m far from being a crafty mom, but they were quickly assembled books that contained stories, drawings about events, photos and things that were of high interest to Noah. Repeated exposure to the experience books not only helped my son to improve his speech clarity, expressive language, early literacy skills, but they also gave my extended family members a chance to understand his early communication and literacy attempts.

Noah's AVT space

Grocery shopping and cooking were full of listening and language learning opportunities. I had to shop and cook anyway! It was tailored to any topic or session target being worked on and was modified at varying ages and stages. When my kids were in high chairs, I used to narrate while cooking. When they were a little older, I would have them find certain foods (colours, shapes, food groups, etc) at the grocery store or the kitchen cupboard. I had Noah and his siblings measure, sort, and put ingredients together. The possibilities are endless when it comes to food and language!

Even today at six years old, Noah is always my first child to ask to help me in the kitchen. But now he is the one narrating to me. He is the one reading the recipe aloud step by step. He is the one commenting on how delicious the ingredients smell, describing how a particular food feels in his hands, how excited he is to taste the final result, and making suggestions of what we should cook next time.

Developing skills that will help integrate listening into the
personality of a child with hearing loss does not happen solely
in a therapy session. It does not require a therapy room in the house,
fancy equipment or a even crafty mom.

I have learned that what is required is an open mind and heart, a willingness to explore the world through your child’s eyes and ears with your knowledge and skills learned from the weekly auditory-verbal therapy sessions.

Resources: Cochlear Implants Online

 

We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://soundintuition.com/blog/do-i-need-an-a…om-in-my-house), as being the originator of the content.

It will be okay

Melanie Ribich short bio

 

“The Click ABR and Tone Burst test results correlate with a severe to
profound degree of hearing loss in each ear. Auditory steady state
responses were also evaluated and correlated well with the tone burst results.
These results indicate that Noah will be unable to detect speech when
the speaker is talking at an average level in a quiet room.
Noah should return for the fitting of super power
hearing aids for both ears.”

When we received the news that our infant son Noah had a profound hearing loss in both ears, we were left stunned.

There was no history of hearing loss in either of our families, and our other two children were born with normal hearing.

 We drove home from that appointment with an audiogram that we did not know how interpret and a report we did not understand. We didn’t have the slightest idea of what would happen next.

Hours of online research later and we were confronted with the stark reality that Noah’s audiogram and report meant that our little boy was deaf.

Our hearts sank as the words repeated: Deaf. Deaf. Deaf. Deaf.

Noah couldn’t hear us singing while we rocked him to sleep like his brother and sister could. We feared that our child would never enjoy music, never have friends to chat with, never talk on the phone and would never hear the rain on our roof. He would never giggle at the dinner table with his twin brother and older sister. He would always be different.

nick-noah

We cried and cried and we began to grieve the loss of our dream of having two perfect baby boys. We were heartbroken that day, because we knew little about hearing aids or cochlear implants. We simply didn’t know what was possible for children who are born deaf and hard of hearing.

We chose Auditory-Verbal Therapy when Noah was just four months of age. Our desired long-term goal was for Noah to hear, listen, talk and attend our local school with his siblings. We had no idea if this would be possible with his level of hearing loss but we were determined to try to have faith this approach would be the best way for our family to get there.

Every Friday morning our auditory-verbal therapist came to our home. Noah’s huge hearing aids squealed. They fell off and often ended up in his mouth as chew toys. My baby would sit on my lap while we tried to get him to respond to any kind of sound, but he didn’t. It became very apparent that I was the only one benefitting from the therapy sessions.

During the week, I spoke, sang, made Learning to Listen (LTL) sounds constantly while I fetched bottles and fed him. I talked to him incessantly while I changed his diapers and clothing. I was desperate for Noah to hear something, to recognize my voice, his name, a song—anything!

But he never did, and I would burst into tears and sob.

We then pursued cochlear implants for Noah because his hearing aids were not giving him enough access to sounds to learn to listen and speak. As soon as Noah’s cochlear implants gave him auditory access, I began to see him respond to sounds and I felt encouraged!

As I learned more in our therapy sessions, I became empowered. The more skills I learned, the less heartbroken I felt.

Our auditory-verbal therapist provided guidance, coaching,
correction through suggestions, and she listened, empathized and
never wavered in her commitment to our entire family.

With the weekly therapy sessions, cochlear implants, and his audiologist, slowly but surely Noah’s words came. Every sound our boy uttered was a miracle at first. I kept a log of every word until I couldn’t keep up anymore.

He began speaking in sentences, then paragraphs, and stories. He even began to sing.

Noah is now the most animated storyteller I have ever met.

The list of things that we had feared that Noah would never do were slowly dissipating.

A parent of a newly diagnosed child once asked me when I knew it would be “ok” and I guess that moment came a few summers ago.

Noah and I went outside to water the flowers and heard bugs humming in the trees; the most incredible sound that you can only hear in the tail end of summertime. Noah immediately exclaimed: “Mommy, I hear so many bugs!”

It stopped me in my tracks.

His eyes were wide and his smile was enormous. It was the first time he had ever noticed this chorus of nature and he was ecstatic.

Those bugs were performing a symphony in my backyard and my little boy who is profoundly deaf heard them.

I suddenly realized that this moment mattered to me just as much as any word he ever said. At this moment, I knew our time of grief was over.

Noah may not have typical hearing but absolutely everything else about him is typical in every way.

Listening has been integrated into his personality.

melanie-noahNoah is now six years old and excels at mainstream school with his siblings, reads above his grade level, and is very eager to learn.

He is primed for anything life has in store for him. The sadness of those early days is gone and we are left with only the joy that comes from being around our exuberant little boy.

With six years of hindsight, looking back on the report that gave us the news that our son was profoundly deaf, I wish it had said:

“Noah is deaf. It is nothing you did—it just happened.
He needs hearing aids now. He may need cochlear implants later.
We will help you learn about both. Go home and drink a bottle of wine and cry.
Then find a great therapist who will teach you skills to help your son
learn to listen and speak. Even though you feel devastated and helpless
right now, eventually, it will all be ok.”

***

We appreciate your interest in this blog post. The text contained in it is copyrighted by SoundIntuition as of the date of publishing. Contact us by leaving a comment on this post if you would like to use this text elsewhere. When used, we would ask that you cite this page, using the full URL (http://www.soundintuition.com/blog/blog-it-will-be-ok), as being the originator of the content.

PHOTO CREDIT: denistorm.com