One account from parent, who explains in the following account of how her daughter is getting on at school with ACC.

My daughter is age 7 and is in a mainstream classroom in school with a classroom assistant in class full time.  She has complete ACC and SOD (septo optic dysplasia) but is very independent and fully mobile, running , cycling without stabilizers, swimming, football, dance etc She has good vision but struggles with depth perception.

Our main obstacle is to educate the teachers each year (they change each year) about ACC and the challenges it brings.  It usually takes the teachers a few months and many meetings to understand the condition and the challenges it brings.

My daughter is a year behind her peers in relation to reading and writing.  She needs so much more repetition before she grasps words letters etc then her peers.  Sometimes her teachers are deflated as it takes so long but I encourage them to stick with it as it will eventually click.   Progress is slow but it comes eventually and once learned it’s not forgotten! A psychologist once described my daughters ACC brain to me as a ship in a bottle analogy …very narrow opening.. so gently and repeatedly feed the parts through…and once they are through they have room to flourish into something set and concrete!

The daily challenges at school are:

Socially trying to understand and get along with peer groups – lots of support given from  teacher and classroom assistant, many social stories etc

Some separation anxiety from mum at drop off (manageable with help from staff)

Writing – huge struggle to form letters and stay on the line, struggle to write in sequence – would recommend the paper with raised lines for tactile feedback and also enlarging all words letters etc

Reading – slow but steady progress – after 3 full school years she is reading 3 letter words – patience and repetition is key

Maths – a complete conundrum – knows numbers but has no concept of plus or minus … it has been taught several ways to her at this point and no progress made … any ideas on this would be very welcome!

Routine – thrives on set routines and use of visual schedules at home and school

Fatigue – tires very easily and a lot faster than her peers- complete rest breaks with no noise or movement twice a day during school time combined with movement breaks throughout the rest of the day all help with this.

Struggles with receptive language skills – understanding commands being given etc. – one command at a time works best – if any more than one is given she will only remember the last one – eg open your bag and take out your book and turn to page 7…. will cause confusion and frustration but if it’s given in separate commands and the pace is slowed down slightly then she can carry out the tasks.
Sometimes if frustration is reaching high levels reducing language use altogether and using visuals instead brings great results – so instead of saying you can have an ice cream or a banana – I won’t speak and just use photos of the ice cream and a banana – it levels off the anxiety !

Fine and gross motor skills are affected – struggles with pencil grip, buttons , zips etc

Weak core muscles – lots of Physio to strengthen these –

definitely struggles with knowing how to put weight on her pencil to make a mark – not sure if it was related to her strength or coordination or sensory feedback.!

Toileting – visuals used in the early days to learn the routine of what to do – at this stage sensory struggles with recognizing the bladder is full… – built the toilet breaks into the lunchtime routine to prevent any mishaps!

Transition from school to home is very difficult – often results in over anxiousness and sad or angry feelings… try to have snacks and visuals ready to relieve some of the anxiety…

These are just some challenges my daughter has faced since starting school and some of the fixes we’ve put in place to try and help her to cope better.  We are based in the West of Ireland.

One thing I’ve learned on our ACC journey is that repetition and patience are key to a happy little girl!