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!!!!

How does a cochlear implant work?

A lot of people ask me how a cochlear implant works and I just watched this video which explains it very clearly and simply.  Scroll down the page to where it says "How does it work" and click on the play arrow to start the animation.  (It only goes for 51 sec, so don't worry, it doesn't take long to watch!)

http://www.cochlear.com/au/hearing-loss-teatments/cochlear-implants-adults

Challenges Ahead

After the euphoria of Henry’s switch-on and first ever responses to sound, it is slowly dawning on me that we still have many challenges ahead.  I know that there will be years and years of therapy to enable Henry to learn to listen and talk, and this is what I have been focussing on.  But even once Henry can listen and talk, there will still be challenges for him everyday.

Henry will always be deaf.  He has been given a wonderful, amazing way to access sound, however without his CIs, he is still profoundly deaf.  And there are many situations in life where this will pose an issue.  Waking in the night for example.  When my three year old daughter Imogen wakes through the night, we can quickly discuss what the problem is (she needs a drink/to go to the toilet/she’s hungry because she threw her dinner on the floor earlier in the evening/she wants a hug/she’s cold/etc).  Henry doesn’t sleep with his CIs on, so he cannot hear anything through the night.  At this age I can usually work out what the problem is, however I wonder how frustrating it will be later on, when Henry will have to get his CIs on at night if he wants to hear what we are saying.

Henry’s CIs are not waterproof either, so he cannot wear them in the bath or the pool.  Technology is advancing so rapidly that I have no doubt this problem will be solved in the near future, but at this stage, bathtime and swimming are going to be a quiet affair for him.  Flying too, since apparently he can’t have his CIs on when the seatbelt sign is on. 

In the big scheme of things, these are just small inconveniences, and I look forward to working with Henry to come up with ways to deal with these situations.

Update: Hearing Age = 1 Week

It is now one week since Henry got switched on to the world of sound.  He is coping remarkably well and has started to make excellent process already.  I cannot even imagine how overwhelming it must be for him to cope with a whole new sense.  He does get tired very easily and after his mapping on Wednesday I think he was just so over-stimulated that, despite being so exhausted, he just couldn’t wind down and it took hours and hours to get him to sleep.  But in general, he actually seems happier.  Which sounds like a strange thing to say, but he has never been a baby to smile much.  He has always seemed content, but not really happy.  Now he is smiling all the time.  Perhaps it’s just coincidence.  Or perhaps he now feels more engaged with all of us.  Part of our world, instead of just an on-looker.  As Helen Keller once said, Blindness cuts us off from things, but Deafness cuts us off from people.

New motivation

Henry- Oh, so this toy makes noise!!

We have renewed energy and motivation to work hard teaching Henry to listen and talk, now that we know he can hear us. It has been really hard over the past six months, learning the techniques of AVT and ‘practicing’ with him so that we were in the habit by the time he could hear. It is pretty disheartening talking to your baby when he clearly cannot hear a word you are saying. But all that has changed now.
Reading books to Henry has taken on a whole new dimension. I used to choose touchy-feely books and really focus on the visual and tactile aspects of the books. I didn’t stop reading to Henry, because I knew how important it was for him to become familiar with books and the process of reading, but certainly some of the joy of reading is missing when your child can’t hear you! Today we had a completely different experience. Sure, I knew he didn’t understand me, but it’s just so rewarding to think that he can hear me now and over time the words will start to have meaning. Singing too is SO much better now that Henry can hear me!! I was singing to Imogen and Henry today and, in the past Henry used to be completely bored by the whole experience, but today (and I might have just been imagining it, because it is quite early) he seemed to feel the energy of the whole experience and was much more engaged.
Imogen has picked up on our lead remarkably. She narrates her actions to Henry (now Henry, I am cutting up mushrooms, see these are the mushrooms, see Henry....), she points out new sounds (did you hear that Henry, that was me banging the table, hear that?), she reads to him (admittedly getting frustrated very easily when he tries to eat the book rather than listening!) and she proudly explains and shows off his CIs to new people. Henry is very lucky to have her as a big sister.

Me and my little angel Immi

Switch On

Henry is switched on!!!
He was really patient during the mapping process and then when he was switched on, he definitely heard my voice!  It was really special.  At the moment, it's just all noise for him, but over the next few months it will start to make more sense, which is going to be really great to watch.  We are so excited and happy.  What a special day.  Henry can now hear!

New Equipment

Henry had his internal ‘equipment’ implanted at surgery, so today we went to SCIC to get all the external gear. It’s amazing how many gadgets and devices he needs. William was excited about the sophistication of all the technology, but I am a little daunted about learning how to use it all. I’m sure that, just like his hearing aids, it will quickly become another part of our routine and we won’t give it a second thought. In the meantime though, I have a lot of learning to do!

Acceptance

Not long after Henry’s hearing loss was first diagnosed, my Aunty Marianne said to me that I probably wouldn’t have Henry any other way. I replied “No. I will get to that point, but I’m not there yet”. I knew that Henry’s hearing loss was part of who he was, but at that time I still wished it didn’t have to be. Since that time, I have learnt a lot. About hearing loss. About family. About what is important. About myself. And about Henry.
Now, we are only at the beginning of Henry’s journey to hearing, yet emotionally I am in a completely different place. I feel calm and confident about what lies ahead of us. Henry’s hearing loss and the activities I was supposed to incorporate into my every interaction with him felt like such an imposition. I resented having to talk, talk, talk. Having to eliminate background noise. Having to constantly explain his hearing apparatus. I thought about what if? What if Henry had been born hearing? I wished I could just enjoy my time with Henry without having to make every interaction a learning experience. But now, it is almost becoming second nature. We attend therapy every week and I obviously have so much to learn, but it’s not a strain, it’s actually just part of our routine. I know we will have to work hard, but I have completely accepted our new path. I know there will still be difficult times. Times when I think I can’t cope. Times when Henry thinks he can’t cope. But there will be so many rewarding times too, and this is what excites me. I have no doubt that Henry will learn to listen and speak. I say, if he doesn’t then that’s fine, we will just do what we have to do, but I never really consider that as reality. He hasn’t even been switched on yet, so we don’t know how he is going to go, but I just feel so confident.
In the past six months, I have gained an even better understanding of how hard it is going to be, something I underestimated before. Yet despite this, I know we can do it.

Implant Scar

In the interest of being completely honest and open with this blog, particularly for any parents who go through this in the future, I thought I would post a picture of Henry’s scar, a week after surgery.  Amazing that they can implant everything and leave such a neat scar and I’m sure once he grows some hair and it fully heals, you won’t even notice it.