Archive | September 2012

Shop and Learn

‘A’ has always loved going shopping. Well, at least that makes one of us. 

To make our shopping trips more engaging, I created ‘A’, a visual shopping list, so she can help find items we needed. This provides the opportunity for having one-on-one time, while getting more in-tune with the shopping experience to learn about making healthy food choices.

A new dinner item was on the menu, and we were ready to go!

Along with healthy food choices, this visual is great for a variety of learning methods, pre-reading skills, visual recognition, social awareness and independence, and speech and language development.

How do your children help you with groceries?

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We Start Speech Therapy

It is a mother’s job to worry right? I always worry that somewhere, something will be missed. Something will cause a roadblock for the girl’s and their ability to succeed; succeed being a very loose term in this context. Something, that, will point at me, as not succeeding as a mother. 

I am very pro-active, but I am still learning, and don’t want my lack of understanding or knowledge to get in the way of helping the girls adapt into the world around them. I wish, just for a day, I could hear in their world, to grasp their experience. I will never fully understand, but I will always try! I will always support them! I will always do everything I can, to make sure they have everything they need, from people who are trained to give them the best, outside of mommy!  

We live in a very oral world, and they need to be equip to function as best as possible. One of the support systems that is in place, is speech therapy. 

 

‘A’ had her initial speech therapy session a week ago. She has established a wonderful relationship with the speech therapist! The best part is, A never realized so much, that she was being evaluated. The speech therapist came into the home, and used A’s natural environment to communicate. Sharing a book, playing games, building with blocks – all which were throughly enjoyed! 

The results, A’s language development is above average. She has an above average vocabulary and sentence structure and most of her enunciations, were on target if not above average. So, now I know that her language development is appropriate (and even advanced) for a 2.5 year old, I can rest a bit at ease. I have always known she is advanced with her amazing knowledge and fast learning abilities, knowing things that are taught in Pre-K and Kindergarten, but I was always unsure with the speech and language, especially having a loss and not being aided until a few months ago.  

So, what is speech going to do for us. Well, thankfully they are not going to close the book! The speech therapist will continue to be engaged in A’s speech and language development and making sure that she maintains, provide feedback for her audiologist to know her hearing aids and/or level of loss are not changing, and working on volume level! 

talk with me

Why do we get so excited for those first words? It only leads to more talking, that never stops – and I mean never! Did you hear that? Yup, it was more jibber jabber.

We will focus on A, since she is older, and the one that is the most verbally communicative at the moment, and some days, I wouldn’t mind it to stay that way – she talks enough for three.

 

A bit more history: A was not diagnosed with hearing loss until she was 29 months old. At birth, she was referred at her newborn hearing exam, but she was not the most cooperative for her follow-up testing with the audiologist. The audiologist said that she seemed to be fine and to follow-up in a year. Around 14 months, we set up a follow-up appointment, scheduled at 18 months. The appointment approached, life happened, her language was developing, we decided to cancel her testing. Well, once R was born with a diagnosis at birth, we wondered if the audiologist wasn’t accurate with A, that combined with her articulation regression, we set up an appointment with R’s audiologist (someone different, phew). A had an audiological behavior test done, confirming our fear, a hearing loss. With her loss and the continued decline of her language articulation, we knew that even though it would be nice for some extra times of silence, it was not what we really thought would be best for her.

Our fabulous support workers provided us options. The more options, the more difficult the choices. There is no rulebook to the best option for MY child and I did not want to mess it up. Were we just going to use hearing aids and have a speech therapist monitor her? She had developed language, so an ASL immersion was not going to be the best option for her at the moment. We are not closed to ASL, we learn new signs every day, and it actually has been a blessing for the moments I cannot understand the jargon clarity of her speech. Well I was not going to sit and wait for something to happen, potentially causing her more regression, I needed to find a way to help her have full access to oral language and develop the skill of reading and writing. It was then the light bulb turned on, I vaguely remember the overview of cued speech being an option. Cued speech, what is that?! It is not something that is common such as oral language and ASL. The gist of it, is 8 hand shapes in 4 positions around the face, to guide lip-reading. This supports oral communication, phonetics of language, and is quick to learn! I’m game!

You can find more information on cued speech, here.

 

Well, here we are today. A is 33 months old and we had our first cued speech session. Our cued speech angel instructor is amazing and comes to our home and helps us with hands on learning and practice! With practice and immersion in our day-to-day lives, talking with the girls, especially during those intimate moments of one on one time and stories, we can really practice it, and they will be able to have a better grasp of connecting with the oral language.

So yes, I would love moments of silence, but I am so blessed that there are options available for our special daughters to not miss important parts of our oral dominant world, of which is so valuable.

 

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Some fun after learning
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The quietest time of day!

Every parent looks forward to the end of the day, when the children are snug in their beds and there is silence through the house. Well, I can commit to that truth ten times over!

With the hearing loss, A cannot hear how loud she is being, (R I’m sure will have her day, when she is older, I’ll slowly wait) especially when the hearing aids are out, and no matter how much effort you put in to whispering, it just doesn’t last!  It is a hope that as she continues to adjust to her hearing aids, with speech therapy, and with persistence, the baseline volume will eventually lower. 

So – when the crickets are chirping, the breeze is blowing through the trees, and the birds are signing their evening tunes, it is peace in the world …. until R cries to be settled back down. 

Turning on the sound

Turning on R’s hearing aids! 

R was the first to get her hearing aids, at 5 months old, March 26, 2012. Pink hearing aids with molds colored clear with pink sparkles. After multiple appointments for the initial test to the ENT to the fitting, then finally to big day, the hearing aids to be turned on. It is a moment a parent will never forget, that first moment, when the world turns on. Her face was blank but with the expression of taking in the new stimuli. It was a moment of emotion and memories.

Now, if only it was easy for an infant to keep hearing aids in. After hours of searching for options, we found the Hanna Andersson pilot caps, were the best option for our needs. It was excitement on delivery day, and no more battling to put the hearing aids back in from being pulled out. With the hat on, R doesn’t even bother with them. If only with a baby, that gets into everything, they were easy to keep clean. It is an item that is sure to need multiples.

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Turning on the sound for R

Turning on A’s hearing aids

After a few months of baby sister having hearing aids, it only comes to a two year old, that she wants to have her own. She waited in constant anticipation for her purple hearing aids to arrive. Now, picking out purple was a very hard decision with a two year old, as she couldn’t decide from blue or purple. And like R, after many appointments,  the big day finally arrived to turn them on, July 5, 2012. The look on her face when they were first turned on was complete surprise, a deer in the headlights. Moments later, R started to cry, and the most impressionable moment of that day, was A demanding that the hearing aids be taken out! It was a confirmation that they worked.

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Turning on the sound for A

Welcome to the world of new sounds!

Feel free to leave a comment, I would love to hear from you.

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An Introduction

With no known family of hearing loss, it was a shock to learn of having children with bilateral sensineural hearing loss, meaning that it is loss of hair cells in the cochlea, therefore it is irreversible. Here is our story:

It is a blessing that our state law mandates a newborn hearing screening. It detected a loss in both A and R. As a follow up with A, her testing came back inconclusive, but when R was born 2 years later with a confirmed mild to moderate loss, we had A retested, and confirmed a moderate loss. Proceeding her scheduled testing, her speech began to decline, and with a greater loss than R, there is a bit of a suspicion that she may have had some progressive loss.

Within six months of R’s diagnosis of hearing loss, both girls were fitted with hearing aids and are continuing to adapt to the world around them.

In the world of hearing or deaf, A and R do not fit either, but thrive right in the middle, at hard of hearing. Their losses may confuse those that are unfamiliar with hearing loss, because even without their hearing aids, they can hear some, and they are able to communicate verbally, but they still struggle. With the assitance of hearing aids, they are able to access speech and hear the spoken language, but it cannot be mistaken for a full audio correction, because it will never be 100%.

We may have to do things a little bit differently, but they can do anything everyone else can do, except fully hear. It’s not a disability, but a special part of their identity.

In this blog, it is my goal to journal our journey as hearing parents to hard of hearing children. It is my goal to share what we learn along the way, the struggles to triumphs, and the pride I share in being a mother to two beautiful girls that have hearing loss!

 

All text and images are copyright to HEAR IN THE MIDDLE. Please do not use any content without exclusive permission. Thank you.