The Hardest Decision to Make

Helen Horn by Helen Horn Additional Needs

Helen Horn

Helen Horn

I am mum to two young men. My eldest son James, who is 27 years old, has a diagnosis of Wolf- Hirschhorn Syndrome and Autism. On my blog I write ab...

The Hardest Decision to Make

Life has changed considerably for my family in the last three years. At the end of April, it will be three years since my then 24yr old son James moved into supported accommodation.

It would be fair to say that since James’ birth, life has been an emotional rollercoaster. With the sleepless nights, open heart surgery, stomach surgery, other minor operations, behavioural issues and seizures to name just a few of the life events we’ve had to negotiate.

However, from the very beginning of the process of looking at a long-term home for James through to moving in day (and some-time after) I shed more tears than I had done at any period of my life.

James moving out was the most difficult decision my husband and I ever made.

When James was very young and the future seemed very far away, we discussed that when James reached his mid-twenties, we should be looking for a permanent home for him. In the end it actually came about by chance because a supported accommodation house was being renovated near to our house.

To cut a long story short, the accommodation on offer there wasn’t suitable for James but the lady who manages the company who run the home invited us to look at another of their properties a little further away. Actually 22 minutes door to door from our house to his.

A couple of months later after several visits to the home and many meetings with all the agencies involved in James’ care, we had to give a definitive yes or no.

The flat we were looking at in a communal home was in great demand. Due to covid, meetings were being held online. One August afternoon in one of those meetings I stated that yes, we wanted to proceed. I was home alone and at the end of the meeting I turned off my laptop and I cried…and I cried some more….and I didn’t stop for months.

It’s a complex process to get all the funding in place not to mention the whole transition process itself for James and preparing his flat too. It was complicated by covid and the actual moving day was pushed back twice due to lockdowns. I really didn’t mind as it meant I got to keep James with us a little longer.

I will never forget how I felt the day I walked away and left James without us in his new home.

Of course, there have been some hiccups since James moved in. Nothing is ever going to be perfect but between myself and James’ staff we work them out. Life has taken on a new routine. We see James at least twice every week, he comes for tea on Tuesdays and we see him at the weekend.

I look forward to seeing James and enjoying quality time with him as I am no longer permanently exhausted. When he is at our house, I spend virtually all my time playing with him and he comes for regular sleepovers too.

What I do know is that I had total control over where James moved to. When I slip out of his life which one day I will, he will be secure in his home.

He will not be uprooted and moved miles away from everything he has ever known. I have seen this happen and this is what motivated me, this is what got me through those tearful difficult days. I did not want that for my son. When I am no longer here, his life will continue…….just without me in it.

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