After one of the busiest weeks I can remember, I am finally managing to catch a few minutes of peace and quiet with a coffee – hot, for once!

Last week it was all go, Sam's EHCP meeting happened as did a meeting with his OT and one of the technical managers from the council…  more on that in a minute, as first I NEED to explode with excitement about Sam's EHCP meeting!

Now then. To set the scene a tad, allow me to take you back in time to 12 months ago when he was at his first school. The one we weren’t exactly very comfortable with. 

Well, the EHCP meeting I attended there was the reason for that discomfort.

In the space of one hour it became very obvious that most of the people there did not know my son, had never met him and were making judgements on his abilities based on the (incorrect) information his form teacher presented.

It was concluded that he was incapable of communicating, had made no attempts to do so, and in effect wrote him off as a lost cause.

My insistence that he DID communicate etc. was dismissed as parental wishful thinking and I left that meeting utterly broken.

Now, back to 2016; on walking into the room the first thing we noticed was that everyone there had spent a lot of time with Sam this year – he was known to EVERYONE there and they were all sharing stories of what he’d been getting up to!

His cheeky personality, his love of painting and making things and how well he had come on with his head control and strength/balance were all highlighted.

He’s progressed from 0-11 month skills to 8-20 month skills in all areas. The only difference is that here he has people who believe in him and who are prepared to work as hard as they need to, in whatever ways work for him, to enable him to develop and reach his potential. 

We walked out of that meeting on cloud 9… I didn’t trust myself not to burst into tears and just hug his form teacher who has been so instrumental in my boys growing confidence.

Who would have thought that so much could be possible in just one year.

The next day we had event #2, the adaptations meeting with the technical manager, aka 'The Man That Makes Things Happen'. 

We’ve discovered that we could quite easily convert our kitchen into a bedroom for Sam, and the adjoining utility room would then become his bathroom/wetroom.

Great we say, but where exactly would be put the kitchen?! And there, dear reader, is the issue.

Although the DFG grant will cover some if not all of the costs of the adaptations needed for Sam, it won’t cover any building works etc required to set up a new kitchen elsewhere in the house.

 

In reality an extension will be needed but we will need to fund it ourselves.

In addition to the £30K DFG, we’re looking at having to find an additional £70-80K in order to make it work. Ouch!

Not entirely sure how we’re going to manage that but my current optimism tells me to just relax, somehow it’ll be ok and we’ll make it work. Somehow.

Even if it DOES mean living off beans on toast and microwave meals for a while. 

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