So, we had our OT visit for the disability facilities grant. And I will admit I hated every. Single. Second. Whether it was the knowledge that we do now need help to care for Sam in his own home or the reminder that things really shouldn’t be this way at all I don’t know.

I just know that I wanted to scream. Our council DFG team OT is lovely. But we live in a 1930’s semi-detached house with steep stairs, no landing to speak of and which has been extended by previous occupiers giving a lovely, quirky family home. With steps everywhere. We bought this house to raise our family in, so talking about what they want to do the change it is upsetting because it Should Not Be This Way.

Sam is only 3, he’ll be 4 in April. He’s tall too, at just under 1m in height, but like his Dad he’s slender. We have to lift him everywhere, upstairs to bed, into and out of the bath, into his wheelchair to go into the garden; steps really don’t help the issue. And as his Dad and I are not getting younger, our backs, arms and muscles are starting to show all the signs of too much lifting, wear and tear. So, we reached the conclusion that adaptations needed to be discussed.

After talking with the OT we learnt the following:

1. All staircases are not created equal. Ours are too narrow and too steep to safely put a stairlift in place; no landing means the lift wouldn’t be able to turn, plus with Sams seizures he could be injured.

2. A stair climber is also out of the question, see point 1.

3. The only option would be a through floor lift.

4. Our bathroom is too small to adapt so a downstairs bathroom would need to be built

5. We wouldn’t be able to put hoisting tracks anywhere in the house, due to the difficult shape of the rooms The problems in our current house are not unique nor particularly unusual. A through floor lift would be HUGE and we’d lose half our front room and a bedroom. The DFG grant wouldn’t cover the cost of an extension AND a lift so it would be one or the other – and even with a lift Sam wouldn’t be able to access the upstairs bathroom.

Which left us with a big decision to make; do we stay and make do, or move house?

After much soul-searching early in 2014 we decided to move. We started to look round for suitable properties – we really wanted a bungalow we could adapt, or land to build our own place. We put our property on the market in May 2014. It meant that we in effect drop out of the DFG process for the time being, and will need to reapply once we’ve moved.

This will mean around a 6 month wait for another OT to come and assess Sam again. We can live with that, if it means Sam gets a home he can actually live in and access! Councils will only deal with access into and around a property, so access to gardens isn’t covered (apart from allowing you to get OUT of your house and INTO the garden – if this means you can get onto a patio but no-where else, tough.

However, this morning we’ve had a breakthrough.

Almost a year ago, when we first started looking we found a dormer bungalow, set back off the road with a large garden. It looked like nothing from the front or from the pictures, but the floor plan showed that we could easily move Sam around it in his chair, and hoisting could be put in at a later date. We never imagined almost a year on we would still not have sold our house.

However, we did find out that we can rent our existing place out; this would cover the mortgage and allow us to move… and the property we loved was still on the market at a lower asking price.

This morning, we put in an offer and after a bit of haggling agreed on a price. Fingers crossed everything now progresses swiftly and smoothly!

We will be living downstairs in the new place until we can afford to have adaptations done and we’ve been through the DFG process again… its going to be tight financially but we’re determined that Sam will have a home that is not only accessible to all of us but that does not look like a hospital ward!

We’ve already been researching bathing aids/wet rooms and know we’ll have to cover a lot of the cost, but Sam spent most of his first year in hospital, including his birthday; we’ve all seen enough of the inside of a hospital to know we don’t want to feel like we’re living in one!

As the move/adaptations progress I’ll update with what we’ve learnt etc… fingers crossed please guys x

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