Jude’s Giant Steps

19/04/2026

When you find the best friend you didn’t even realise you needed ♥️

28/03/2026

Today we went to visit a very special friend who invited us to her boys birthday party. Jude can find ‘parties’ very stressful due to noise, social anxiety and visual clutter.

Today Jude managed 1.5 hours before asking to leave. It was great for us all to leave the house together and be with other people we care about.

Even if it was only for a short time.

21/03/2026

Always so grateful to my lovely mum, who had Jude for 3 hours today so I could take a breath and get some important things done. Current Local authorities decided not to give us any respite for 10 years and counting. …even still after the judge ordered it.

Thank you mum. Not sure how I would cope without you.

But it shouldn’t be this way should it?
There is nothing in the community suitable for Jude to access either.
What a F - up world we live in.

Get your priorities right and support the most vulnerable - surely?

Love you mum. Always indebted ###

17/03/2026

Medical appointments get harder to attend as Jude gets older. I have also now come to dread them. Jude is curious about the world and everything that’s happening to him, but struggles to process the information he often asks clinicians to break down for him.

This often results in sensory processing overload and extreme anxiety that is so severe we have to leave the appointment prematurely, often without the information or advice we purposely went there to obtain.

Whilst some clinicians are wonderful and go out of their way to understand Jude and be gentle with him, there’s equally the same number of clinicians that really do not care and are not able to understand what’s important to him. These are the appointments I truly dread.

The ones where the Doctors don’t even read anything before we come into the room and I am there cringing and left to try and explain things but without talking about Jude, in front of Jude.
Which i can tell you, is a pretty impossible situation to be put in.

Unfortunately we’ve had two of these not so desired appointments already this week and the fallout has been massive.

Today we did have a small win at wheelchair services, where there is one of the nicest clinicians we know and Jude finally got given a decent wheelchair cushion that looks like its going to provide proper support and comfort, especially during the long journey to school.

The previous one was wafer thin. Not exactly sure how we ended up with it in the first place? Jude had to miss a whole day of school to attend the appointment, which he was unhappy about. He loves his new school, he falls apart when his routine breaks.

Anyway, very happy with the small win, this week, as always.

As cusions go, this one is gold dust and much more appropriate for his growing needs and worsening scoliosis.

22/02/2026

Hey, Life’s been super busy. We haven’t updated Jude’s page in a long while.

Following our tribunal hearing in which the Judge ruled completely in our favour. Things then predictably took a different turn.

Just when we thought we could relax after a landslide win, trying to get the support we need, our local authority, ESCC refused to follow the order of the courts; except provide the new school placement.

So all of the social care and health support we were awarded; the 2 nights respite stays at school and the direct payments we were awarded by the Judge remain unfulfilled.

This was a huge blow which has now entwined us in a judicial review process.

Why do governments HATE disabled children and their families so much?

Because appropriate care comes with a price tag they will do ANYTHING to ignore.

We are now almost ten years in and zero acknowledgment we provide 24 hour care ( plus work jobs) and also have another son that is affected by this.

Parents carers die early due to stress and lack of support. And that’s just a reality.

Send reform is looming, so more cuts and gaslighting and more traumatising of families to come; but it’s hard to see how it can get any worse?

But obviously it can and will.

We continue to hold our heads high, fight back and look for the beauty in every day moments we all share together.

Jude loves his new school, is thriving and is finally understood by his teachers that have expertise in his conditions.

Holding on to the good is sometimes all you can do. And of course, continue to hold the line between right and wrong.

14/11/2025

01/11/2025

A bad case of flu for half term for all of us here.

Today was the first time we managed to get outside. Beautiful yellow leaves and autumn colours in the woods.

Let’s just try to delete this awful week from our memories and somehow begin again ..

29/10/2025

🎉Justice was finally served last week.

We won our SEND tribunal and Jude will be changing SEN schools to a new setting, our parental preference.

Jude was initially incorrectly placed in mainstream, then it took 2 years to get him out.

Then he was shoehorned into an inappropriate SEN setting ( that didn’t match his profile) because it was ‘cheaper’ than sending him to the school we wanted him to go to, a school that DID match his profile.

I lodged an appeal. I was made to wait 1.5 years to have my say. When we were finally listened to, we proved that decisions made by those in power were all wrong.

They put so many obstacles in my way, and they hoped I would give up.

Most people would have given up for the sake of their own health, but I was never going to do that.

The system tried to kill me, and it may of succeeded a little 🥹 but I did EXACTLY what I set out to do,

I won ! 🎉

24/10/2025

28/09/2025

Very smiley today in therapy 😊