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@spinningworldofautism

Time can change everything. 💜 Proud of my prog

Time can change everything. 💜

Proud of my progress & wanted to share. I never thought that I could get to this point. A solo breakfast date, where I drove with Ethan in the car & we had a wonderful time. I hope this gives some hope if you, at your current time, don’t believe this would ever be possible. 🧡 Of course we had hard moments - Ethan & waiting in the queue just aren’t possible & in the stress I totally forgot to order my own breakfast - but, it didn’t spoil or totally derail our day as it would have before. We chatted via his AAC device, Ethan watched a little YouTube, we did one of his fave number puzzles & I had strategies up my sleeve to support change & transitions which I just wouldn’t have known about before. 💛

I saw that @mattzhaig shared an image recently sharing “Same tree, different seasons” & it really resonated with me. I’m still me & always have been - even during the hardest of years. But, now I’m coming out the other side - hopefully wiser, definitely older [hello grey hairs & wrinkles], with hopefully lots more breakfast dates waiting with my little boy. 🫶

Oh joy. Now the government, whilst simultaneously

Oh joy. Now the government, whilst simultaneously trying to scrap EHCP’s, remove parental rights & make our lives much harder, are trying to turn us against each other & belittle the only support that many of us get. 🤯 For me, other families on Social Media & the content they share has been the biggest support network - from seeing an AAC device being used for the first time, to parents who had been through it before supporting us literally every step of the way through the EHCP process, to information about specific diagnoses, to general “you’re not alone”, guidance style posts. The wisdom I have gained is unmatched & I will always be grateful for it. 💜

The examples given within the article seem to, yet again, totally disregard neurodivergent families & I for one am totally sick of it. As a generalisation, families like mine aren’t supported - our children are diagnosed [after fighting & waiting for years] & pretty much that’s it. We’re left to battle it out ourselves. In an ideal world it would be full of neuro-affirming professionals, short waiting lists, regular Speech & OT appointments, guidance & support, an array of specialist schools - but for many of us our online communities are our lifeline.

To use a phrase used by Bridget Phillipson within this article, we’re also building a “legacy that will last.” We’re researching, fighting, messaging, campaigning, advocating, emailing & supporting others - all to put “children front & centre.” 📣

And, of course, I know that misinformation is an issue online - but many of us within these online communities are using our voice to counteract this.

Dare I say it, is the government starting to know our voices are stronger together & is starting to see Parent Voice & our communities as a threat?

Communication is everything. 🫶 When Grandad wi

Communication is everything. 🫶

When Grandad will always honour the 100 “Ahchoo” requests made via your AAC device. 💜

Sound on for the laughter. 🫶😭🩷

Device used: TD Navio by @tobii_dynavox_uk

Trigger warning // I have gone back & forth with

Trigger warning //

I have gone back & forth with whether I want to mention this today - this post comes with a huge trigger warning as the statistics are honestly devastating. But, I was reminded today how talking about suicide is essential to prevent it, so here I am. 💜

Please protect yourself if you need to though & don’t read any further.

Recent research from @unibirmingham has found that 41% of parents caring for a child with a disability or long-term illness have thought about suicide & less than half have ever told anyone about their plans & feelings. Those who did reach out shared that nothing ever changed.

“Led by Dr Siobhan O’Dwyer, the first UK study of suicide risk in parent carers found that for those who do speak up, the response is rarely helpful. The problem is not being the parent of a disabled or seriously ill child. The problem is trying to care for that child in a system that is no longer fit for purpose.”

They have recently produced a short film, which is 8 minutes long, to accompany this research. It’s heartbreaking, hugely emotional, hugely powerful to watch & I feel every one of us will relate to it in some way - I will link this in my stories if you want to watch it or share it with anyone you know.

If you need support today, please reach out to a trusted friend, family member or advice line & share your feelings honestly. You’re not alone & you matter - you deserve to not always be seen as the “strong” one. I hope that you get the response you deserve - the response that remembers your name, the response that truly listens & a response that validates you rather than makes you feel ashamed or worthless. 💜

A quote from the film - “we don’t need you to pity us, we need you to believe us, help us. If we say we’re drowning don’t study the tide just throw the damn lifeboat.”

💚 @samaritanscharity: call 116 123
💚 @mindcharity: 0300 102 1234

P.s I cried whilst writing this post & watching the above film in Coffee #1 this morning - it’s a hugely emotional watch, but one I would recommend none-the-less. Have the tissues ready. 💜

Thank you @unibirmingham for putting this together - it’s so needed.

On World Mental Health Day I’m sending love to p

On World Mental Health Day I’m sending love to parents of autistic children. Those who advocate, those who support, those who co-regulate - but will always need a little extra love & support to do so. 💜🩷

📣 My son’s AAC device is his voice – please,

📣 My son’s AAC device is his voice - please, please, please listen. 🩷

So often non-speaking autistic individuals are underestimated & it’s my greatest fear, as the parent of a non-speaking autistic child, that my son also will be. He deserves to show all that he knows, all that he can do & be surrounded by those who will always assume his competence.

We’re on a mission, with the help of his AAC device, AAC advocacy & various educational resources, to show the world exactly what he can do.

If the world won’t accept the way he communicates,
If the world won’t provide suitable learning opportunities,
If the world won’t listen the way he speaks,
How will they ever know?

📣 My son’s AAC device is his voice - please, please, please listen. 🩷

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