Claire, Isaac and the whole family
Claire is mum to eight year-old Isaac. Here’s her story:
“Isaac is 8 years old and the light of our lives. His big brother Josh and big sister Miriam adore him. He’s non verbal, double incontinent, and doesn’t really have any understanding of the world around him. He’s very sensory. He puts everything in his mouth, loves water and greets the world with a smile, a shriek, a clap and a licky kiss. Developmentally he’s somewhere around one to two and has been for several years now. Doctors never really found out why. They’ve called it severe global development delay, profound multiple learning disabilities and now Autism.
Isaac does not believe in sleep, or rather he sees it as an unnecessary waste of good partying time! He’s awake a couple of hours each night. Sometimes he’s awake and miserable. Sometimes he’s awake and everything is hysterically funny.
We have been on a mission since he came out of a cot 5 years ago to find a way to keep him safely in bed at night. I pride myself on being a quite ingenious, can do person who doesn’t give up easily. Sadly those traits are obviously hereditary and Isaac, or Houdini as he’s sometimes referred to, has frequently beat us!
Mummy and Daddy make DIY safe bed frame out of wood with long curtains tucked under his mattress- score one to team parent. Isaac wriggles between the gap between the curtains, escapes at 2am, knocks the bath taps on and floods the bathroom. Score one to team Isaac.
Mummy adds poppers to the curtains to try to keep Isaac in his DIY bed, 2-1 to team parent. Isaac finds a gap at the foot of the bed, escapes, and we wake to find him in the kitchen grinning at us, sat in a puddle of squash someone left out, trying to gnaw his way into a tub of custard. Team Isaac evens up the score.
Through it all Isaac giggles and claps and seems thrilled to have us join his 2am party, and we scratch our heads and go back to thinking how we can next keep him safe and get some kip.
At home at the moment our latest combination of a wood frame and a fabric cover is working. He loves enclosed spaces and seems to need to block out the visual stimulation of his room to be able to settle, but I know soon he will beat us again, it’s not a long term solution. He’s made very little developmental progress in the last 5 years and we’ve accepted one day we will be caring for a non verbal, incontinent, adult toddler with severe learning disabilities, no real understanding of the world around him – five foot something of pure mischief. As he gets stronger and bigger it’s essential we keep him safe in his bed at night.
We get by with a sense of humour, supportive friends and a lot of coffee! Going away on holiday however is a whole other ball game. The last time we attempted to stay in a hotel we had the management knocking on the door frequently throughout the night telling us they’d had complaints about a child running about and shrieking and clapping. That was pretty hard.
Today a letter came through the post though and the world became a better place! Our Cerebra grant for a safety sleeper had been confirmed. This amazing piece of kit fits into a small suitcase to go away with us, and folds out into a fully enclosed and very cool looking safe sleeping tent . It can go everywhere with us and when team Isaac next defeats our DIY home solution, instead of weeping over triple strength coffee and eating a whole packet of Jaffa cakes, we will simply put the safety sleeper up in his room as his permanent bed and know he’ll be safe. This is our forever solution. Everywhere we go, it will pack up into its case and come with us. And that will restrict the bathroom floods and squash/ custard spillages and all the other mischief he gets up to, to just the daylight hours!
Not in a million years could a family like ours afford the four figure sum for this incredible product. Without Cerebra’s grant, while we would single-handedly keep the world wide coffee industry afloat, we would be facing a pretty bleak and sleep deprived future and we have got pretty close to just giving up on attempting to take the children away on holiday and chasing Isaac about all night. I will be watching the post, our game changing life changing safety sleeper should be delivered next week and we have booked to go away the week after for a few days to try it out. So from the bottom of our hearts, thank you Cerebra, for giving us a reason to hold onto our sanity and dare to hope that this is a big part of our happily ever after”.