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Two Steps Forward, One Step Back

Two Steps Forward, One Step Back

The work will give him his own bedroom for the first time, and will mean we have a downstairs bathroom with bath and level-access shower for him, together with hoists to move him safely and easily.

I’m so excited that after years of feeling like we were banging our head on a brick wall things are slowly moving forward!

But it is a slow process. Most people assume that once the Council have said the plans meet the requirements for the disabled person that work will get underway quickly.

Sadly that isn’t the case – we now have to get planning permission for the work as an extension will be built for Sam’s new bedroom. So that could be around another 8 weeks.

Then we need to discuss with our architect where power points are needed (we need so many for all his equipment), where water and gas need to go, etc., then we have to get builders quotes in to find out how much of the work the Council will fund via a disability facilities grant.

Only *then* can we even think about getting work started…

I cannot even begin to tell you how exhausted I am by this whole process.

As with the majority of things disability-related, nothing is ever quick or simple.

The services in place to support families and children are woefully inadequate, and the majority of families end up, just like us, waiting years for essential work to be done.

On the plus side, my boy will have his own bedroom!

That is a massive thing for us all, until now he’s slept in the same room as us for safety; and because we can’t get him upstairs safely for the past 2 years we have slept in what is actually our dining room.

But I’m also terrified. For over 6 years my little man has slept less than 4ft away from me.

We have been immediately on hand to help him when the seizures hit, or when his monitor alarms (often these days because he’s kicked the probe off his foot, but you can’t ever ignore it… just in case).

When he’s upset it’s a simple matter of reaching over and gently comforting him until he settles again.

In the future, he’ll be across a corridor from us... not far in the grand scale of things at all, but it makes me feel sick with worry that we’ll miss a seizure, won’t be there fast enough, and so on.

Of course, the reality is certainly that he and we will be absolutely fine; once I’m used to him being in his own room I doubt I’ll so much as blink at the idea, but for now its overwhelmingly frightening.

That poor child will have so many video monitors, SATs monitors, etc. he won’t be able to hiccup without alerting us!

That and I strongly suspect I will be sleeping on the floor of his room for about the next 20yrs…!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

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