Hearing: still not out of the woods

We were back at the ENT hospital today for yet another hearing checkup for Charlotte. While I am wholly grateful to the NHS for the first class treatment we have been getting for free, the waiting times each time we attend a clinic are phenomenal. But today it was pretty good: in and out in less than 2 hours. But no discharge yet.

Charlotte still has some mild hearing loss. In reality, she is probably no worse off than many children her age but because we got into the system, they can't discharge us in good conscience until she is testing normally. Today's tests went particularly badly: it was nap time, she was crying and carrying on too much to hear the sounds and hated having headphone-type sensors put in her ears. But we got the best results yet so hopefully next time, with more co-operation from her, she will get a good score.

Blog post

I wanted to share this blog post about mothering a disabled child. It sums up my feelings very well.

Famous navigators

Christopher Columbus, Ferdinand Magellan, James Cook? Oh no, my little Charlie is the best of them all!

Without her, Granny wouldn't have found her way to pick Emily up from school. She was heading into the completely wrong classroom and Charlotte grabbed her hand and started pointing and pulling her into the right room. Granny had no idea why she was making such a fuss but was so proud of her for being such an expert navigator. Not bad for a toddler!

Little rocker

Charlotte went to her first concert today. As I suspected, she rocked out!

Aside from the typical naughtiness expected from the under twos in public, she seemed to really enjoy herself. She danced along, looked at the lights, enjoyed the darkened surroundings and was generally an exemplary concert participant. I thought she would enjoy it because even in Starbucks, she bops in her seat to the music!

It was pretty clear she couldn't see the stage and was probably completely unaware that there were people on it but even Emily had difficulty grasping the concept of a live performance. Maybe binoculars would help her in the future, but, hey, who can see properly at a live performance?

Who did we see? The Wiggles!

Achromatopsia playdate

This week Charlotte had her annual get together with her little friend Harvey. We can only do this during school holidays because they don't live very close to us but it was worth the trip. It is so nice to get together with people who are having the same experience as us and even if Charlotte and Harvey have nothing in common as they grow up, hopefully it will be a comfort to each of them to know that there are others in the world like themselves. Plus, it is fab to go to someone's house where they also keep the curtains closed!

Airports

I've been I've been travelling on business this week and thinking about navigating airports with a visual impairment. i was noticing the special assistance given to some passengers and wondering if Charlotte would avail herself of it in airports.  They seem like they might be great in some ways and terrible in others. The lighting is really bad but all the floors are level and smooth with wide corridors; but the signage would presumably be a problem: reading the departure boards would be a nightmare. But they have those great golf carts for assisting passengers who need it.

I would think that is she wants to be an independent soul, she would navigate airports on her own but if she feels like a big of pampering (as I do at my age!), she could book some assistance and get all the benefits of being driven to the gate and queue jumping. This would presumably not apply with a discount airline.

Of course, once she is on the plane, she has proven that she loves, loves, loves the rod lighting!

More pre-school stuff

I had a very nice phone call today from the principal of the pre-school of one of the schools we applied for. She said she was calling to find out a bit more information about Charlotte's condition and if there was anything they could do in the assessment to enable her to have a better experience. We talked for a while and I tried to explain as succinctly as possible. She offered that they could assess her one on one in a room with the blinds drawn. I'm impressed! The suspicious cow in me wonders whether she was calling to find out more information to decide if they are going to assess her or not, but if I take her words at face value then I like their attitude and they are climbing to the top of my wish list! I am sure she was also impressed with my wonderful document full of positive statements about what Charlotte can do and how high our expectations are. I hope that there are some schools out there that would be proud to brag about how clever one of their disabled students is and feel good about educating a blind child so successfully.