William: Creating His Own Space
When our son William was diagnosed with Tuberous sclerosis we decided that stairs and complex epilepsy were not a good combination, so we moved to a bungalow. We could only afford one that had two bedrooms, it was in a real state, but it had potential.
When William was six his sister Jessica was born. Jessica’s cot was put in our bedroom but William’s sleep problems and challenging behaviour became a major issue. All four of us regularly had broken sleep. We decided that the only way forward was to move William in with us and give Jessica her own room.
Eventually, as William was sharing with us, we were reassessed for the Disabled Facilities Grant. The powers that be looked into whether the children could share (our comment being not if you want Jessica to sleep or live!)
After much arguing and a huge amount of stress we eventually reached a plan but at £60,000 it was £30,000 in excess of the grant. We set about raising £30,000, no mean feat but we did it over two years. William now has his own bedroom and ensuite bathroom.
The new room hasn’t been a magic wand, but it gives William his own space and the rest of us space too. We now have a sofa bed in his room – I sleep on it most nights as otherwise he would scream the place down, but it’s progress.