"Things to do with Henry"

When family and friends spend time with Henry, everyone always wants to know what they can do with Henry to help develop his listening and speech, so I have a few pointers printed out and stuck on the fridge.  It also serves as a good reminder to me.  I have put a copy below.

 

Things to do with Henry

• Use a moderate, clear voice.
• Use full sentences and model language correctly.
• Talk, talk, talk – about every activity you do with him.  Don’t miss a chance to have a conversation whenever you can, and be close by and at his eye and ear level.  He needs lots of extra talking to, to learn both the language and how to listen.  However don’t talk about abstract things- talk about what Henry is focused on.  
• Give Henry a chance to talk back.  Ask him a question and wait, wait, wait.  Count slowly to five.  Only then provide the answer if he has not yet responded.
• Reward approximations.  If you say ‘cup’ and he says ‘oo’, don’t correct him, just say, ‘that’s right, it’s a cup, good talking Henry, you said cup’.
• Sing songs that are fun and include actions.
• ‘Communicate’ – When Henry makes sounds, copy and make them back, and then vary it and start a new sound and see if Henry will copy it back.
• Minimise background noise – turn off the tv, washing machine, etc.  It makes it very hard for Henry to hear properly.
• Say it before he sees it eg. ‘Do you want a drink Henry?’  Give him a chance to think about what you are asking, then show him the drink.  Do you want to read a book Henry?  Wait, then show him the book.

Aims:
-   To teach him that words mean something.
-   To teach him how to listen- how to distinguish between different sounds (much harder for him than a hearing baby).

And remember, he is our little baby Henry first and foremost- lots of hugs and kisses - enjoy him!!!!!

Henry 'talking'

I have been working so hard on Henry's "Learning to Listen" sounds - sounds which represent the different types of speech sounds that babies need to detect, identify and eventually produce as speech.  We have been working on associating different sounds with different toys or actions.  Henry takes after his father, so loves cars or anything with wheels.  So the 'vrrmmm' sound that we always try to associate with these have been heard by Henry over and over again. 
And now he has starting imitating the sound himself!!!!!!  It is so exciting.  He has only been hearing for six weeks and already he can not only associate a sound with a particular object, but more importantly, can attempt to do the sound himself!  Go Henry!

"Here's to the Mum's"

I have come across this piece on numerous other blogs and websites - I think it's lovely and recognises that value and role of mothers in a child's journey with hearing loss. 
(You can see the original post at: http://cochlearimplantonline.com/site/?p=1870)
I have actually printed it and stuck it up on my fridge- it's lifts me when I'm feeling down.

HERE’S TO THE MOMS
Here’s to the Moms who may not have “signed up” to parent a deaf or hard of hearing child, but do so anyway with grace and love.
Here’s to the Moms who narrate every second of every day, not caring what others may think.
Here’s to the Moms who put miles on their cars driving back and forth to countless therapy sessions, doctor’s appointments, hearing aid fittings, cochlear implant mappings, and more.
Here’s to the Moms who work hard to be their child’s best advocate and primary language role model.
Here’s to the Moms who have had to learn a new language full of AVT terms and audiological jargon.
Here’s to the Moms who face the “experts” and fight for their child’s best interest in IEP meetings.
Here’s to the Moms who can wrestle a CI or HA onto a squirming toddler… and replace it hundreds of times each day without loosing their cool.
Here’s to the Moms who can cook dinner, answer the phone, and change a CI/HA battery without breaking a sweat.
Here’s to the Moms who constantly have to explain their child’s “equipment”.
Here’s to the Moms who have ever felt the pain of having a child who is “different”.
Here’s to the Moms who never take a single word for granted.
Here’s to the Moms who never fail to astound me with their capacity to persevere… and to love.

Getting On With Life

My life has been very hectic lately, with many unexpected events consuming much of my time and energy. So the focus has moved away from Henry’s hearing. But that’s life. We committed everything we had to Henry over the last couple of months, however this couldn’t be sustained forever, nor would you want it to. We need a balance. We need to move on with life. That’s not to say we have lost any of our dedication towards our quest for a Hearing Henry. We will keep doing everything we can, giving him every opportunity. Henry’s particular hearing needs form a cornerstone of both our day-to-day life and our long term plans for the future. However there are other elements too and these will jostle for attention at different times, each requiring a different level of focus as circumstances change and time moves on.

We are still in Sydney, so still in the intense mapping and therapy stage of Henry’s journey. However the appointments are just becoming a way of life. I have been learning the Auditory Verbal Therapy techniques for eight months now, so hopefully I am becoming better at incorporating them into my everyday life. I know there are many things I do now which have just become second nature, which is how you want it.

When Henry first got his CIs, I looked and saw my little boy with his new CIs who could now hear and I was so excited. When we went out to a coffee shop, or the park, I wanted to show everyone. I didn’t- but if anyone showed the slightest interest, I jumped at the opportunity to tell them all about it. Now, when I look, I just see my gorgeous little Henry, I don’t even see his CIs. Sometimes when people walk past us they stop and do a double take, have another look. And I think, yes my children are so cute! And then a minute or two later it occurs to me that they were probably looking at his CIs!

Video- Henry and Immi on Henry's Birthday

My little boy is growing up!!
I thought his birthday was a great opportunity to buy him some toys that make sound, which he is really enjoying.

First Birthday

Today our little boy turns one year old. It has been an emotionally intense and immensely rewarding 12 months. Personally, I feel that I have grown in so many dimensions.
I have felt a depth of emotion that I haven’t felt before. I have felt the pain of my children’s challenges. Long nights in hospital nursing Henry sick with pneumonia, fighting with hospital staff to do everything I could do to give him the best care possible. Undertaking a rapid education into the world of hearing loss, determined to find out all I needed to know to give Henry the latest, the best opportunities available and make the best decisions we could for him. Navigating my way through the protocols, the testing, the medical professionals, to properly diagnose Henry’s hearing ability and get him on the road to being hearing. And I have experienced great joys. Watching the relationship between Imogen and Henry strengthen into an amazing sibling bond. Seeing how Imogen has accepted and embraced Henry’s hearing issues with a love and compassion beyond her years, or perhaps because of her years. Celebrating the joy in every day moments. Henry hearing a knock at the door. Imogen chasing him down the hallway trying to put his CI coil back on his head. Moments together as a family, enjoying just being together, knowing that these moments are what we live for.
I think I have better clarity- I have refined my ability to filter that which is important and that which I just let fly right past me without blinking. There is less that is actually important, that warrants my attention. But those things that are- my family and close friends, I have a better focus on, can devote all my energies to.
I have a better understanding of our capacity to love, to withstand obstacles. And to really understand, what are obstacles? There are many things which we think may define us, may limit us, but it’s only in our mind. Henry was born completely deaf, but we all have no doubt that he will grow up hearing and communicating, participating in life. Both our children, Imogen and Henry, we do not have a defined path for them. We will celebrate their achievements and help them through their rough times, but we do not have a yardstick of success to measure them against. All we want for them is happiness and most of all love, an ability to meet challenges with a smile and take joy in the moments that life brings us every day.

Henry and Imogen out for a babycino

Happy Birthday my darling Henry. One year of age. One month of hearing.

Making Progress

This week at therapy we did a formal assessment of Henry’s speech, language and development. The “development” aspects are interesting- there are many aspects of a child’s development which are dependent, at least in part, on hearing, which are not immediately obvious. For example, an early aspect of cognitive development is the concept of object permanence- the idea that an object is still present even though you can’t see it. This is easier for a hearing baby to learn because they are exposed from birth to situations which assist in understanding and learning this- such as their mother talking when they can’t see her. Another aspect is social development. Things like saying hello and goodbye – this is a baby’s first experience in participating in social interactions. It makes them feel part of the family, the group, and engaged with everyone. It is difficult for a deaf child to pick up on the social cues that allow participation in something so simple as hello and goodbye. A knock at the door goes completely missed. Talk about ‘saying goodbye’ does too. Waving must appear completely unexpected and random.
Hearing is such an important sense that it can delay so many aspects of development that are so important for a child.
We first did the assessment at RIDBC when Henry was six months old and had been wearing hearing aids for nearly three months. Having been initially diagnosed with a moderate-severe hearing loss, he should have been responding well to his hearing aids, but I never felt they helped at all (and I’m still not sure if the initial diagnosis was wrong, or his hearing just degenerated quickly after the test). Anyway, Melissa had the assessment that we did in August last year with her this week. At six months of age, Henry was assessed at 0-3 months in development and did not even make the chart in speech and language (ie. he was not even at 0-3 month level). Interesting, Melissa did not tell me that at the time- I think that would have been a bit disheartening!
This week we did the assessment again. Henry has only been hearing for three weeks, so we couldn’t expect too much. He was roughly assessed at around 6 months developmentally and 0-3 months in hearing and speech. I have to focus on the positives. The fact that Henry, at almost one year old, has a hearing and speech perception and understanding of a newborn baby is something to be celebrated, because he is actually on the way now. If we hadn’t ‘addressed’ the problem , then it would be hard, but I have no doubt that Henry is extremely smart and we will start to ‘catch up’ really quickly now that Henry can actually hear. And I can see Henry learning and developing so quickly in front of my eyes. He is making sounds and babbling. You know how babies babble? I actually had forgotten that. But as Henry does things now, I think, oh yeah, that’s what babies are supposed to do. My Henry who has pretty much been silent for 12 months (what is the point making noise if you can’t hear it??). He is still on vowels sounds, and we are eagerly awaiting something more, as this will be really important (things like ma ma, and ba ba...), but we will get there, soon I’m sure. Can’t wait!!!!