How cool is this?!

Henry gets to be just like any other child, enjoying playing music with his sister.

How great are Cochlear Implants!!!

We are eternally greatful for the opportunities Henry has.

hearinghenry business is up and running!

Our hearinghenry business, selling products to keep hearing devices in babies and toddlers is up and running!
We have four great colours of both the hats and headbands and deliver worldwide!  We have:
Pilot hats - to keep hearing aids in, and
Headbands - to keep cochlear implants on.
Please check out our website: www.hearinghenry.com

Would love to hear your feedback!!

Twelve and Six Months On

Twelve months ago, Henry was five months old.  After numerous appointments and tests and re-tests, he had been diagnosed in Dubai (where we were living) with moderate hearing loss, fitted with hearing aids and sent on our way.  From my online research I understood that Henry would benefit from some sort of early intervention, but I thought this was more of a bonus, not the necessity it actually is.  I made an appointment at the Royal Institute for Deaf and Blind Children (RIDBC) in Sydney, and I feel that this was the turning point to getting us on the right track with Henry.  Melissa, who would become our therapist, took the time to explain hearing loss, early intervention, and the sort of services that were available in Australia.  Despite my lack of knowledge of all things hearing related, I had a mother’s instinct that Henry still wasn’t hearing, despite wearing his hearing aids every waking moment.  With Melissa’s support, we pursued this over the next few months.  The assessments and tests we did in Australia over the next few months, combined with my observations and Henry’s lack of progress hearing-wise, resulted in a clear diagnoses in December of profound deafness.  These six months between our first trip to Australia, and Henry’s surgery in January, were fraught with worry, confusion, uncertainty, sadness and stress.

Our next turning point was 4^th February 2011 when Henry was switched on.  In the last six months, Henry has moved ahead in leaps and bounds.  It seems like he was just waiting for a chance to hear and access the rest of the world.  Our quiet, serious little baby has been transformed into an engaging, curious, very intelligent, still sometimes serious, but also very noisy, little boy.  Before the surgery we were so worried about him getting CIs, how much work they would be to manage and maintain.  But most days we barely notice he has them.  I put them on first thing in the morning, and then I just have two normal, hearing children who play together and fight together and do everything that any other child does.  I am eternally grateful that Henry has been able to enter our hearing world, and especially at such a young age.

This week Henry had his six month post-implantation assessment, and even though we knew he was doing well, it was so nice receive such positive feedback from his audiologist and therapists and to compete the same assessments he did six months ago, but this time with completely different results.  In one assessment on speech perception and language, he got a score of 1/44 last time.   This time he got 36/44, which is an awesome result.  I am so proud of how far my little boy has come and so grateful to everyone involved in our progress, particularly RIDBC and SCIC.

I Need You

Just jotted down some thoughts on my responsibility as a parent and what Henry needs from me.

I Need You

I need you to teach me, with patience and understanding.

I need you to help me, nurture my strengths and strengthen my weaknesses.

I need you to challenge me, new ideas, new problems, new insights.

I need you to set boundaries for me, allow me to explore safely, and to know my limits.

I need you to set examples for me, allow me to live by the model you demonstrate to me.

I need you to love me, unconditionally, without question.

When I succeed, I need you to celebrate my accomplishments.

But when I cannot do the things that other children can do, this is when I need you the most.

I need you to be proud of me and love me, as I am, who I am, to love me in spite of, because of, my differences.  I need you to be proud of me, so that I can be proud of myself.

Imogen

Imogen has adopted the language of a mini- Auditory Verbal Therapist as she models her behaviour on mine, as always.

She points out sounds: ‘Henry, did you hear that? (exaggerated pause, pointing to her ear) Did you hear that, that was a cow”

She repeats herself:  ‘Henry, do you want the truck, this is the truck, do you want the truck?’

She commentates life:  ‘Henry, look, Grandmas is cooking, can you see Grandma cooking?’

Her language has even become more basic as she adopts my simplified versions of everyday words:  She says: “ba, ba, ba, balloon” and “ta” instead of thank you.

And she matches objects with sounds, “Look Henry, that’s a bird, the bird says, tweet, tweet, tweet, bird, Henry, that’s a bird”. 

All without even thinking.  It’s amazing how as the language has become second nature to me, so too has it to her. 

Sometimes I find it frustrating that I can’t sit and read to Henry quietly without Imogen chatting away.  Talk about minimising background noise, not an option when Imogen is around!  But having her around also provides so many positive benefits for Henry. And she is the best model for Henry.  He watches her every move and copies everything she does, so it’s a very powerful thing to have her modelling language for him.  I have to remember not to expect too much of her, after all, she is only three.  So if she wants to crawl under the table and pretend to be a cat, which Henry can imitate perfectly, well, that’s okay.  After all, they are children first  The most rewarding thing is to see them playing together, not as an advanced three year old and hearing impaired one year old, but as brother and sister, my two precious munchkins.

Some photos of the kids mucking around...

Henry and Immi being silly in milk crates

Henry teaching Immi tricks this time- car in the mouth for photos!

Glimpses

In the morning when Henry gets up, I slip his headband with his CIs onto his head and at that moment he is transformed into a hearing baby.  And until I remove it as he hops into the bath that night, there is really no difference to our daily life with him, we are just like any other family.  Sure,  I try really hard to expose him to as much quality language as possible, I talk and talk, and I point out sounds and commentate our life, but for the most part I have just gotten on with life, busy juggling two small children and my new business (hearinghenry).

However, sometimes I come across a new aspect of Henry’s hearing loss, and it causes me to stumble for a moment.  This week Henry has (finally!) moved into his own room and so I went to buy a baby monitor, so I would still be able to hear him through the night.  As the well meaning sales assistant explained the features of each one, she tried to sell me on the ‘parent talk’ feature – ‘look, you can just push this button and talk to your baby if they are distressed’.  I quickly assured her I didn’t need that (as of course Henry wouldn’t be able to hear me) and tried to move on.  “But you can sing to your baby”, she continued, “you could sing songs and not even have to go in there”. 

And at that moment, I felt raw and exposed again.  I felt a wave of grief sweep over me as I thought of Henry in his cot at night, in a world of complete silence, unable to even hear his own cries.   I felt the pain of Henry’s deafness.  My layers of positivity, strength and composure completely stripped away for that moment.

But every time this happens, I add a new layer.  I become stronger on the outside, yet below, I have a new depth of compassion and feeling.

I can’t pray that Henry doesn’t have difficult times as he grows up, because that is inevitable.  But I do pray that he can use his adversity to develop strength, empathy and love.  

"Up, Mama"

I had the most amazing moment today.  I was trying to get Henry to go down for his morning sleep, but he kept crying and crying in his cot.  I walked into the room and he looked up at me and said “Up, Mama”.  So, so beautiful!!!!!!!!  It’s the first time he has put two words together.  In fact, he has only been saying “up” (when he wants to be picked up) and “mama” (sounds more like ‘baba’) for the past week and now he put them together!  I am so overwhelmed.  My little boy who has been hearing for just over four months, is talking!  We are hearing henry!!! 

(Ironically Henry could not hear himself at the time as he doesn’t have his CIs on when he goes down for his sleep).

Will is in Dubai at the moment, so I just told him on the phone.  His message back sums up beautifully how I feel, so I will quote him here:

I can’t explain how happy and excited and amazed and thankful and tearful I feel about what henry was saying.  I’m lost for words...........................awesome!