• Alice – Who wants one ? – “Meeeeee”

    July 20, 2009 By in Uncategorized Leave a comment

    Sometimes it’s important to draw a line in the sand.  Alice’s speech and language are delayed.  Not a surprising comment, but how much is something less tangible. According to her most recent testing, Alice is currently about 1 year behind.  Oh god she’s a year behind! but actually its more of she’s only a year behind.  With everything that has happened since we discovered a year ago, I couldn’t be more pleased.  We have a target, albeit one that keeps moving but we can see “age appropriate” on the horizon.  The game is now to narrow the gap as quickly as we can. As parents we are now firmly AV, as confirmed by our continual use of “Good Job” to every spoken response. I think we may be slowly driving ourselves mad.

    Alice is targeted to have 30 words in 6 months, her pace is picking up and we hope she does better than that.  We can count around 20 approximations.  One of the common misconceptions is that you should think of implantees in terms of hearing age.  But Alice has the brain of a toddler not an infant hence the increased expectation.  Normal 2 year olds have many more than that, so we have to up our game.

    Daddy is sitting at home delighted that Alice can finally say something that sounds like Daddy. The joy the small things bring is difficult to put into words. x

  • Reality Bites

    July 14, 2009 By in Uncategorized Leave a comment

    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.