The Rollercoaster

Written for Firefly Friends Blog (https://www.fireflyfriends.com/uk/blog/the-rollercoaster/)

The Rollercoaster

Watching Isla in a playpen with the toddler toys in the waiting room of a specialist’s office yesterday, it was clear she is a much younger child in a 9 year old’s body.

By shutting down and lying fully stretched in the middle of the waiting room, soothing herself by sucking her favourite finger, reminds me not only that she should have grown out of this habit of by now but also when she gets overwhelmed she has no regard for others.

By trying to constantly grab all the equipment during the appointment and not listening to instructions, Isla shows me when she is out of sync she cannot focus and needs to constantly explore to feel regulated.

After a great week of achievements this was a stark contrast and did give me a few pangs of despair!

This is the rollercoaster of a special needs parent. One minute you are celebrating the small, but major achievements, and then it all comes crashing down.

We try to focus on the successes.

The easy transition of wearing new glasses and her look of amazement and wonder of being able to see a whole new world.

The willingness to do new therapy exercises each day to help wth neuromotor immaturity.

The first birthday party without one meltdown and overcoming fears about the guest magician!

These are the things that we mostly live and are a constant source of heartwarming celebration. The hard stuff we downplay as it can’t be changed.

Along with the highs and lows, there have been many unexpected outcomes from being a Special Needs Mum.

I love it has given me a purpose and a passion.

I love I can share knowledge and experiences to help and educate others.

I love the amazing connections I have made because of my child’s disorder in our local community and also online. See my blog post A support group – a lifeline to the newly diagnosed parent

I love that Isla has taught me about what really matters and has changed my priorities.  I now judge people by things such as kindness and encouragement, not by success and achievement.

I know its sounds cliche but Isla really does see the world differently. This in turn makes me have a new appreciation of  being in this world. The hustle and bustle, human nature, qualities of people, unspoken communication, beauty of nature, the complexities of our brains. The list goes on. Isla has changed me, opened my eyes and helped me love unconditionally. I thank her for that.

Being a special needs parent can be exhausting, lonely and scary but it is also amazing, hopeful, joyful and surprising. It is parenting but just in a different way.

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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