Any journey has ups and downs, peaks and troughs. What I have found with Alice’s incredible journey thus far is that the peaks are so high it makes your head spin and the troughs have you reaching for that second bottle of Chablis that you know you neither need nor can your health justify.

When Alice is doing well, and by that I mean visibly progressing on an almost daily basis, it is all going to be ok. The fears about school, her future, her hapiness all disappear and the smile is hard to wipe from our faces. Then there are the times when it doesn’t seem to go so well. When Alice is too stubborn to play ball or some connection in her head hasn’t quite developed yet and her progress is halted. Add to this that, despite the phenomenal amount of time and money we have devoted to specialists, they don’t always seem to help and the whole house of cards can come tumbling down.

Yesterday afternoon I think I hit my lowest point so far. As Alice’s Mummy mentioned, until Alice’s hearing feedback loop is fully developed, her speech will not come on as fast as we or she would like. As a result, we have seen very little progress over the past couple of weeks. Her hearing and listening continue to improve to the point that, practically speaking, life has windows of being almost ‘normal’. We had spent the entire afternoon at one of Alice’s specialist centres and my patience finally ran out. Why are we here? What are you doing for Alice? Are you just making this up as you go along, because that’s how it feels?

The journey home was long and painful with many tears of anger and frustration held back on the way.

We knew this was how it was going to be, but I don’t think anything prepares you for just how low it makes you feel when you hit the buffers. On the positive side, I have not met a single CI parent who doesn’t regail you with stories of their own ups and downs, but by God the downs are hard.

What’s worse is that it can change on an almost daily basis. You can go from swimming in the glee of sucess to drowning in the depths of despair all within the space of 24 hours. I’m beginning to feel a little bipolar.

Nobody said it would be easy. We never expected it to be so, but nothing can prepare you for the physical and, more importantly, emotional journey that CIs throw at you.

Anyone entering on this journey should be under no illusion, its very very tough.  Alice needs to be taught speech and language one step at a time.  Being determind and logical people we have chosen to follow an AV approach. 

For the uninitiated, AV is Auditory Verbal therapy.  In essence, AV believes that parents (or carers) of the hearing impaired child are the primary therapist.  The AV therapist merely directs and shows the family the techniques for achievment.  think of it like a rugby team with coaches and players.  the rugby analogy seems to work better given the amount of time you’ll spend grinding out a result.  every metre is hard fought. 

Anyway, AV’s other main ideology is that Alice needs to learn to listen, (of course you all say) but here’s the rub.  Given she has spent 2 years not listening, we have to draw her attention to sounds and then stop giving her the other clues we all take for granted in speech.  That means no signing, no gestures and no lip reading. If she is to gain the most from her CI, she needs to develop an “auditory feedback loop”.  In plain English, this means I hear it, I say it, I think about what I can hear myself saying and then I improve it.  Alice should start to regulate her own speech and improve on what she hears.  This is a skill that hearing children do naturally, Alice needs to switch on her concentration to her ears alone. 

This is tough, Alice is an excellent lip reader, she mouths so many words, but take away our lip patterns to copy and she’s not as good.  She doesn’t like that (Daddy on the video below is distracting her by pointing at the jigsaw, to stop her lip reading), but every day we practice.  Alice is becoming good at connect 4 as every time she gets a sound right she can put another piece on the board, have a grape, get a sticker or whatever the latest game is. 

AV is all about lifestyle.  You shouldn’t leave a room without telling Alice where you are going, Alice has everything around her explained constantly and she is surrounded by the most annoying parents in the world.  We forget sometimes and talk to the rest of the world in the same way (and thereby look slightly mad). 

Aside from all the  therapy, she is growing up.  She’s down to start nursery in September, a huge leap of faith for both us and her new teachers.  Her teachers have no specific expereience of deaf children and certainly not of CI’s, so its a huge learning curve.  However, this is where her TOD comes into her own, with training days and specific Q&A sessions for the staff and the special needs team.  We have been overwhelmed by the positive response so far and pray that she will cope.  Alice can stay at the same school until she is 18, so we hope that she likes it.

The hard work continues and if you see a mad man in the supermarket, showing his beautiful daughter the milk and repeating himself a hundred times, stop and wonder why, chances are he’s doing his best to give her a most wonderful gift.