All things Isla 


I have been struggling with a specific subject for a blog so thought I’d write a general update of where we are at in general with all things Isla.

From being  a non verbal toddler,  Isla certainly makes up for it some days when she has a great sleep and is chirpy and full of chatter. I love these chats with Isla where she will tell me “its raining mum and the rain makes our trees and flowers grow”.  She will ask me “mum when will my boobies grow?…maybe when I’m 8?” and tells me when I say “perhaps you should take your slippers off when you go outside “don’t worry mum my slippers can handle it”. Her BFF Sammy gave her some cute hair ties for a prezzie and Isla says “maybe next time you can bring me Shopkins”. Discussing what we are going to have for dinner on the way to school, she says “maybe not meat… I struggle with meat”. She says these things with such sincerity and her wee high pitched sing song voice brings a smile to my face every time.  

Isla is now back sleeping back in her own bed after a few months in our room when we all just needed a bit of uninterrupted sleep. So far so good although she will still yell out at least once per night and by the time I get to her room she is wide awake. The wind and rain haven’t helped matters with her waking terrified and covering her ears. We have had a couple of 4 something am mornings with her (and me) not able to get back to sleep. Am hoping the addition of a 4 legged friend sleeping on her bed will help give her the comfort to go straight back to sleep. Fingers crossed. She really is a different girl after a full night’s sleep and I cope a lot better too. 

Talking of a 4 legged friend we have been matched with a dog and is all very exciting. I am really hoping her new friend will help her deal with the outside world a bit better when she struggles and provide me a helper when I struggle with her.

Academically Isla is progressing. Her reading is definitely coming along and I have recently discovered that she knows pretty much every word on Minecraft. I’m not sure exactly how considering the word isn’t sounded out when you click on it. She must have watched a fair few Stampy videos! Her letter formation is also getting better. She can still only spell a few words…Sammy and Isla being the most popular but we will get there. Her teacher Adele is the most amazing lady. In her spare time she helps with Special Olympics and has just been approved as a respite caregiver for foster families. I am so grateful for her and she is responsible for most of Isla’s progress. 

Therapy wise Isla does art on a Monday. Loves this and is great for her to express herself and for her social skills. She generally likes to paint boxes. The emphasis isn’t necessarily what they create but how they share it. 

She has started one on one swimming lessons on a Tuesday which is hard for her but good for her brain and motor skills. It is so so challenging for her to do more than one thing at once and to make her arms go forward instead of back (freestyle versus backstroke) is almost impossible for her. Things I took for granted with her sisters  are so difficult for her to master.

Fridays we have dance therapy (same organisation as art) and she also enjoys this although we have had a few crying episodes last term. Think it might be a bit much after an exhausting week at school and a bit of sensory stimulation causes her to shut down. She still is keen to go each week so we will persevere.

Toys, the iPad and computer are still her favourite things. Paw Patrol seems to be a favourite at the moment with Shopkins a close second. She plays for hours with play doh with her carer Zali and enjoys playing board games with her. Then she spends the rest of the time saying “you go home now Zali?” and Zali has strict instructions to sit on the couch when she’s playing with her toys! 

The seizure monster visited us before the holidays unexpectedly but fortunately not again since. There was no trigger for the latest one and she seemed to recover quickly after a sleep. Is frustrating understanding why these still happen randomly but for some reason her brain just decides to shortwire. We are apparently on a waitlist for a 24 hour EEG but who knows when that will happen.

Isla’s “stims” or a new name I have discovered “complex motor stereotypies” are out in full force currently. Upon researching why she does it…the reason is no one knows!  It actually can affect non autistic children (termed “primary”) or autistic children (“secondary”).   Her noisy expression of excitement is still very much a part of who Isla is and we have learned to accept it. In class when it is a bit loud for the other children Isla uses a chew necklace which helps quieten her down a bit. Another thing she has developed is loud belching. With Isla you have the I’m concentrating hard, swallowing air, small burping which has been present for a while now. However this has now progressed to loud, man sized burps which will draw attention wherever we go.  I’m sure people can hardly believe that noise has come from a small girl like her and probably think it’s one of us!  There is nothing I can do to stop her doing it so what does one do?  You can’t do much I can tell you! 

However all in all things are pretty good at the moment. There are external things that frustrate me some days. Things I can’t control and wish would be different. However i will continue being an advocate for my daughter and educate people as I go. 

Thanks for reading x

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

2 thoughts on “All things Isla 

  1. Great update Sara. I’m still laughing about the ‘Shopkins’ comment today. Wouldn’t life be so refreshing if we could all be as honest as Isla – maybe she’s got it right and society, with all its conventions, rules and hypocrisies has it so very wrong. Loved our bowling excursion with the girls X

    Like

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