Tots Together

02/12/2024

Hi everyone! Just breaking the FB silence with a little plea ❤️🙏

The charity who helped my Dad so much (The Wight Brainy Bunch) have been shortlisted to become our local ferry operator’s charity of the year. This is a HUGE opportunity for a tiny charity.

They have a 1 in 3 chance, but they need all the help they can get…👇👇👇

If you can spare 15 seconds, please, please click the link, scroll to the bottom and vote for them so they can help more families like mine in their time of need 🙏🙏

Come on Tots family, we can do this! Thank you soooo much for all your support. I hope you’re all doing ok ###x

Vote for your favourite Island shops, restaurants, attractions, accommodation and more in the Isle of Wight's ONLY visitor voted for awards. Voting closes 31st December 2017.

03/09/2024

Thought I’d give this a share - hope you’re all hanging in there ok! ❤️😭

And just like that... they’re starting school.

Covid baby/toddler parents, take a moment to really let it sink in. Everything we’ve been though. Everything they’ve been though. Look where we are now.

It seems like a distant memory when we were locked in our houses, not allowed to mix with others, each day rolling into the other. Our babies grew daily before our eyes, yet somehow simultaneously, time seemed to stand still.

Now we watch them fly, mix with others, hold hands and do things that in covid times would have been unthinkable.

Social Distance Tots. Tots Together. Baby Group of 2020. You did it. We did it. 😭♥️

24/02/2024

WE HAVE A DIAGNOSIS!! 🙌🏼

After being on the NHS autism assessment waiting list for over 2 years - and with an estimated 2 more years until assessment - we recently decided to take the decision to go down the private assesment route. Unbelievably, this has only taken just over a month - from initial enquiries to diagnosis 🤯

I know that the diagnosis isn’t going to suddenly magically change everything, and it won’t necessarily even grant us an EHCP, but it really is a step closer to understanding our wonderful girl. Her assessment report (that we will receive in around 2 weeks) will contain recommendations of support that she needs to thrive - not only now, but also for the hurdles that they think she may face in the future.

I wasn’t asked to write this post, I didn’t get a discount or anything for doing it, but I thought I’d let you all know in case any of you out there are feeling how we were; a bit frustrated with a broken system and constantly feeling like we were having to fight for her.

There are lots of private assessment companies out there… my self-researched, limited understanding is to make sure who ever you choose follows NICE guidelines, that the professionals are members of the HCPC, and ideally that they use the ADOS assessment criteria.

After lots of researching and a recommendation, we chose to use CareGen for this. It was £1,200 which is obviously a lot of money but it can be paid in instalments (plus that is actually a very ‘reasonable’ price in comparison to some other services 🙈) Apparently, in some areas, you can also ask your GP for a right to choose and you maybe be able to get the assessment funded via the NHS, although I think this also takes a bit of time.

I really liked that, although pretty intense, and very extensive, it was done online so that Indi could be at home - where she is most comfortable and probably most willing to show her true authentic self. They also do a free initial consultation and free screening with you a few weeks before, so that you don’t pay a penny unless they consider there to be a real need for assessment. Dr Abdi (who we spoke to) also works for the NHS in the neuro-divergent team, and he was so knowledgable.

I’m just posting because I was genuinely so apprehensive about what company to use, questioning whether it’s worth spending out for a private assessment etc, and if it hadn’t been for a recommendation I would probably still be deliberating today! I’m happy to try to answer any questions, feel free to pop a comment below if you have any!

Anyway. That’s the most I’ve written in months 🤣 well done if you made it to the end 🤣

For now, I’ll leave you with a video of our Tots Together superstar Indi and her beautiful, happy, flappy stims ♥️