Our Journey of Jumbled Joy

26/04/2023

It is somewhat strange to me that no one ever knew I was autistic yet there was obviously something 'different' about me. The sign was always there: that I was always on my own.

Maybe it is a sign of the times because not much was known about autism then, compared to now.

Can you relate?

More: https://thegirlwiththecurlyhair.co.uk/2018/12/03/how-to-cope-with-not-being-able-to-integrate/

06/04/2023

Airenay has a genetic change and brain differences that whilst medically diagnosed can't be attributed to anything/we can't know for sure what they might mean for her in the future due to lack of information on her '7q11.22 AUTS2' specific duplication, future research may shed some light & that's why we signed up for whole genome sequencing so they can keep her information on the world wide database,

As she was recently diagnosed with Autism this is part of the information pack we have received today, plus a page full with local services and contact numbers. There is nothing on here I didn't already know because I've been reading for 4 years straight, but to read it with the 'official diagnosis' does feel a bit different. I hope one day in the future her being understood and accepted will make her feel liberated ✨️

27/03/2023

💜💜💜💜💜

18/03/2023

💜

15/03/2023

Today after a Multidisciplinary Team Meeting Airenay was diagnosed with ASD. She is 'officially autistic'

It's not just a label, it's an explanation and its answers, to questions that one day in the future she will ask & be able to understand why she struggles with certain things, why her brain works the way it does.

Thinking back to when she was 1 years old and I knew that there was something, all the sleepless nights, the online searching, joining forums, all the assessments, all the people who told me that 'all kids do that'. Today I could let my shoulders down & breathe out

It doesn't change anything for us just confirms what we already knew, but it opens some doors and gives clarification to others.

Nobody wants their child to have difficulties but i wouldn't change one thing about this absolutely incredible girls personality, who's got the most amazing sense of humour, outstanding memory, so unbelievablely inquisitive & caring, she's so passionate about everything & gets so much joy from life!

Different not less 💜💜💜

09/03/2023

It's been 6 months since Airenay started at her specialist school. We couldn't be more pleased with how she's settled in and the friendships she's made!
But if someone would have told me when she was newborn that she'd be in a specialist school, that she'd be having therapy since 1 years old, or that she'd be diagnosed with numerous conditions before her 3rd birthday, development delays, brain abnormalities, genetic abnormalities, well it would have broken my heart! But here we are, yes it's a hard journey but my girl really is thriving with all the support in place ✨️

& it all began with my gut instincts. I've had many people ask me over the years about their child as they have concerns & they're too worried about voicing them. Please don't be! There are lots of parents who've been through the same thing ready and waiting to help you. Seek support & get the ball rolling..

https://www.specialneedsjungle.com/coming-terms-childs-hidden-special-educational-needs/

06/02/2023

We all win 🥰

24/01/2023

🙏🏻❤️

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10/11/2022

I see all of these but especially the rehearsed scripts, forcing eye contact, appearing to know what's happening, and ignoring sensory difficulties, which all cause the coke bottle effect. Airenay doesn't suppress stims too much yet probably because of her age, but I never want them to stop, i could watch her all day 💜💜

05/10/2022