School & Beyond

Written for Firefly Friends

Our eldest daughter has just finished school. She is neurotypical and has a bright, exciting future in front of her. She is fortunate to be able to attend University this year. She will make new friends and have new experiences. She is responsible, mature and independent. Although we don’t know what the next few years will bring, we know she is on the right path to being an independent adult.

I wonder how it will feel when Isla, who has autism and a rare chromosome syndrome, leaves school. In NZ if you are enrolled in a special school you can stay at school until 21. Although Isla is only 10 and we have quite a few years ahead,  I can’t help thinking about her future.

One of the biggest fears of a special needs parent is wondering if your child will ever have an independent life. Will they ever be self sufficient without you? This doesn’t come from a place where you think they will be a burden. You just worry how they will cope without you when you are no longer here.

Everyone needs a purpose and to feel valued.  Finding the correct path for a young adult with a disability after leaving school is going to be challenging I am sure.

We are already trying to think of business ideas we can embark on. Something that Isla will be able to take part in so there will be something for her to do at this stage of her life. The key is to find something that we both have an interest in. It would have to be financially viable without too much stress.  It is not surprising we haven’t come across the perfect idea yet!

For those with autism I can imagine the transition from school life will be hard to deal with. Shifting from the routine, predictability and socialisation that school brings to one of isolation and having no direction will be tough. Some parents say that there is a black hole when their child finishes their school years.

We can only hope when Isla reaches that age and stage there will something for her to do to give her a purpose. Some comprehensive transition support available to guide us through. An increased acceptance of disability in society. An opportunity she is keen to participate in. A group home available for her to lead a semi independent life.

We have many hopes for Isla.

When we are entering this time of her life we also hope we will be just as excited about her future years as we are about her big sister’s.

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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