Tuesday, October 24, 2006

Bilateral Progress, Conferences and Being Two

Tom has been switched on bilaterally for a week and a half now. The left (new) ear is still mapped very conservatively but there are signs.... small signs. His grandfather said that Tom turned straight to him when he came into the room out of his sight line and spoke. Just the sort of response we're hoping for.

We occasionally experiment with speaking to Tom when he's only got his left ear 'on' - Nik noticed some verbal mimicking last night so his brain is starting to work something out. He still demands the right is switched on too, but then, he's always been a big fan of symmetry - wouldn't countenance one hearing aid at all; it always had to be two.

Listening to the Pros


I attended a conference run by the Ear Foundation last week – ‘Parenting in the Cochlear Implant Era’. Got to hand it to the Ear Foundation - they put together an impressive array of speakers that included David Luterman, one of the big names in the field of audiology (worthy of autograph-hunting it would seem… although I should be careful what I say having once asked Jakob Nielsen to sign a poster featuring a cymbal-playing monkey.).

The day’s target audience was audiologists, speech and language therapists, and teachers of the deaf; essentially all flavours of professional that we’ve had wandering through our lives these past six months. As you might imagine, a number of chords were struck, not least by the parent who gave an eloquent, humorous and reflective account of parental support needs. He referred back to the early days, soon after the diagnosis of his son’s deafness, when they could barely move for workers and how, now his son has been implanted for some 10 years or more, the visits have dwindled regardless of need.

We are at the start of this process – our current list of regular visitors and appointments stands at:

  1. Education service Teacher of the Deaf (once a fortnight)
  2. Cochlear Implant Team Teacher of the Deaf (once a quarter or so)
  3. Cochlear Implant Team Speech and Language Therapist (once a quarter)
  4. Auditory Verbal Therapy (once every two-three weeks)
  5. Audiology Mapping sessions (once every four weeks for each ear – haven’t quite worked out whether they are in sync or not)
  6. Community Paediatrician (once a quarter or so)


All excellent to a greater or lesser extent…but where have we gained the most insight and support? The parent speaker hit the nail on the head and the Ear Foundation is fully aware of the key element – its other parents we need. You cannot underestimate the relief felt when you don’t have to explain anything and you can cut to the chase about comparing harnesses, mapping experiences and therapists.

Hopefully, we can also compare homework answers. We’ve recently entered the world of ‘The Protocol’ a sizable folder of tables and forms that challenged our knowledge of Tom’s language development – and we thought we were attentive parents.

‘Does he pronounce ‘d’s and ‘l’s?’
‘Does he make and understand complex statements involving two or more actions?’

We’d tried to be good, liberal parents and not get involved in comparing Tom to other children; now we have forms to help us do it in a thorough, structured fashion. I fear we might get told off and kept behind after class– between the appointments schedule, work and looking after the little blighter something has to give.

Watershed Weekend

Tom went to stay with my parents this weekend. For the first time since his illness, we took advantage of Hotel Nanny and Papa while we snuck off to London to catch up with friends. All the assorted professionals in our lives will be delighted with this news as were the hosts, who were thoroughly entertained by Tom’s comedy repertoire, insatiable desire for stories on grandparent’s knees and willingness to succumb to requests for hugs and kisses.

We coped too. Numerous friends greeted us with ‘Where’s Tom?’, he being far more popular than us these days, but his absence allowed us to have an ill-advised quantity of red wine and stay up far, far later than was good for us.

Tom barely noticed us when we went to pick him up, ensconced as he was in Nanny's armchair looking as sweet as you like. He'd managed to talk his grandparents out of lunchtime naps which may well have contributed to the 'overtired' tantrum-to-end-all-tantrums we experienced when we got him home. That's payback for you.

4 comments:

John said...

Tom at his Grandparents - that's what I call a win-win-win. Fanstastic for everyone. Congratulations.

Anonymous said...

Wonderful to read all this.
BTW, any links to get some info on 'The Protocol’?
SOunds like an interesting way of guiding our children...

Anonymous said...

This is pure brilliance...

"We’d tried to be good, liberal parents and not get involved in comparing Tom to other children; now we have forms to help us do it in a thorough, structured fashion. I fear we might get told off and kept behind after class– between the appointments schedule, work and looking after the little blighter something has to give."

Anonymous said...

Monday night, I was filling out a form. Under the "Physical Mobility" section, it asked:

"Does you child climb onto furniture".

It seemed like a trick question.