Article: retinal imaging

Article from Chicago Lighthouse
Applications of High-Resolution Retinal Imaging in Achromatopsiaby Joseph Carroll, PhD
The Eye Institute, Medical College of Wisconsin

I always read these research reports with such mixed emotions.  On one hand, I would love for there to be a "cure" for Charlotte; on the other, I don't want to get our hopes up.  On the one hand, the researchers seem to be making great progress; on the other, any treatment will take a long time to get to market, with many setbacks.  On the one hand, she could have greatly improved vision one day; on the other, her cone cells are deteriorating/dissapearing as she ages and her time is running out.  On the one hand, there will eventually be a treatment; on the other, it will not be without significant risk.

It's such a rollercoaster.   One day at a time...

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Playdate planning

Charlotte has her first drop-off playdate this week.  I have been trying to walk the line between preparing the carer for keeping her safe on the walk home from school and having them to think it is all too daunting to take on.  

I ended up saying "Don't worry too much, the worst that will happen will be that she falls over."  I think I need a one liner about a single task, something like, "Don't forget, she can't see a step until it's too late".

Sunglasses A/B testing

I know there is some variation of opinion about red lenses within the Achromatopsia community but I thought I would share this little experience from yesterday. 

Charlotte is finally old enough to start to make proper decisions and communicate them in ways that I can understand.  We ventured out in bright sunlight, she was already wearing her third tier pair of sunglasses, her off-the-shelf Julbos.  She seems to like wearing them indoors, she often goes and finds them for herself (and calls them her "special brights").  I suspected that she can't see as well with these as her Moorfields pair with prescription and custom tinted lenses (her "school brights"), so I stashed these in my bag as we walked out the door.

As soon as we stepped outdoors, I could feel her hand grip me tighter and her steps get smaller and more tentative.  The difference between that and her ususal behaviour was remarkable.  I stopped her and made her try on both pairs of glasses before choosing which to wear.  She didn't want to experiment but quite quickly settled on the prescription lenses and we set off as normal.

 

New teacher

Charlotte has a new teaching assistant assigned to her.  She will be there 4 days a week which is what the statement funding will cover.  It will be great to see how she makes progress in the classroom with a bit of extra support.

She told me that the new teacher showed her how to draw a bicycle with two wheels and a seat.  It seems as though she was not aware that pictures of bicycles included a seat. 

The plan is that we won't make Charlotte expressly aware that this teacher is assigned just to her.  It will be better for her socially, and for her relationships with the other teachers, if the new teacher is there as extra support for the whole class.

I am so pleased and proud of the school.  So many (private) schools won't accept statemented children; but this one understands that there are benefits for the class and the whole school.  From a purely mercenary standpoint, they have put in some extra work up front for paperwork and meetings and got an additional teaching assistant out of it.  Who, parents and staff, would not prefer their nursery class to have one teacher and three assistants?  By the time she gets to year one, it would mean a doubling of assistant resources across two classes.  (Two assistants for two classes, instead of one shared between two).

I am aware that this is possible because of public funding and I am incredibly grateful for the state support that she has received.  From medical services, through visual impairment support and disability benefits, we have been incredibly fortunate.  Tax and spend, heh?

On a practical level, I briefed the new teacher by giving her a copy of the incredibly helpful Teachers Guide to Helping a Student with Achromatopsia from the Low Vision Centres of Indiana. 

Watch me!

One of the benefits of having a blind child is that the endless “Watch me, Mummy!” can be faked.

“Yes, yes, I’m watching darling!”

Except I’m not, I’m looking down at my book/phone/work as one does when one is supervising small children in the garden.

“You’re not watching!”

Huh?

“I can’t see your face!”

How much vision she has is still a source of mystery to me.  We were in full sun and she was moving confidently between light and shade and she could see if my face was turned towards her or not.  Partial Achromatopsia?  She still hasn’t let her Ophthalmologist actually measure her visual acuity.

Statement approval

Great news – Charlotte has a statement from the local council.  She is going to be getting the maximum hours per week of classroom support which equates to a full time classroom assistant dedicated to her learning.  It is going to be wonderful for her progress in school, she is clever and she probably has been held back in the classroom by her vision.  The school are now due to recruit someone for her and I can’t wait to meet them.  It is going to be under review after two terms but hopefully it will be able to become longer term and might last her through her primary years.

She is making great progress in her independence.  I'm sure that having an older sibling really helps.  She sees her sister going to “drop-off” birthday parties and playdates and has insisted that she wants to do the same.  Luckily the last two parties were ones where her older sister was also invited so it was easier to leave the two of them together.  But she has been getting on fine on her own.  It is amazing what a difference that first year of nursery makes to their birthday party participation.  In September, she was lying on the floor, crying; now she is rushing off without even saying goodbye!

She is scooting to school every day.  I have to give her a lot of help with bumps in the pavement but on the flat surfaces, on a familiar route, she takes off in front on her own quite happily.  I would like to get her riding a bike some day.  It will be a good source of mobility and independence in adulthood, if she can be safe in traffic.