Sleepless nights of fear – one family’s story of inaccessible housing
Danielle Faulkner, is the mother of James, 5, who lives with hydrocephalus, water on the brain. Read about her battle to find a suitable home for James, and how their currently unsuitable, inaccessible home impacts their lives literally and emotionally, every day.
“My son James was born prematurely leading to multiple disabilities, some we had not heard of at the time of diagnosis. Immediately after James’s birth, life became focused on keeping him alive with the goal of ‘getting him home’. However, what we hadn’t considered was that getting him home would just be start of our battle.
No safe home
We have moved four times in the last five years due to James's complex disabilities which compromise his safety and therefore limit the housing in which we can live.
Despite our very best efforts and desperate searching we are still not living in a house, which is safe for James as a result ‘home’ feels more like a prison and life feels like it is permanently on hold.
You see, we have so much to take into consideration - things that unless you are in my situation may never be of concern.
For example, steps. James isn’t going to get better. In fact, the prognosis means that he will always be dependent on us for his care and so, as he grows, it will become harder to lift him.
We were offered a house with five steps to the front door- it simply wouldn’t work for us as we won’t be able to lift him up the stairs and it wasn’t possible to put a ramp in.
‘Reasonable’ adaptations
We are offered houses with the promise of reasonable adaptions. However, ‘normal’ adaptations would cause more risk to James and so, when we work with our social landlord, it is vital that James is seen as an individual and the recommendations as listed by his neurosurgical team are taken into account. Often, we feel this doesn’t happen.
What we noticed during James's first five years of life is that things like the bath taps being too large and bulky causes James too frequently strike his head against it. The size of each room is always difficult to cope with as we need storage space for James's equipment.
Multiple professionals are involved in James’s care, all giving advice and recommendations as to what we need to do to help him. This includes creating a sensory room for James to be completely safe and able to learn and develop to his best abilities.
If we create this room, James’s may be able to reach his full potential, but there just isn’t the physical space in our current property to do so. The room would have to be safe as James has had had multiple brain surgeries and two devices in his brain that keeps him alive, head bangs isn't an option for him.
Support from Harry’s HAT
We have been fortunate to have been supported by Harry's Hydrocephalus Awareness Trust (Harry’s HAT) for a few years now. We've had emotional and parent support.
The support varies depending on James’s needs and surgeries at the time. It can be support for our mental health and well-being. That includes phone support, sibling support, connections to other families that are in a similar situation as us etc, or funding for equipment that James has been able to use to build his strength, muscles and coordination.
We also make use of all the resources on the Harry's HAT website, which includes things like information packs to give to his teacher to help the school understand the complexity of his hydrocephalus.
The resources have been developed by families for families and the information helps us with questions we may have and provides links to those who can help us now and in the future.
Inaccessible space
A child like James needs lots of life saving equipment and yet we can't seem to find any space to allow us to store them out of the way and thereby minimising risks to James as he manoeuvres around the house.
We have multiple areas of danger in our home including radiators and windows. James is still very young in his mind and doesn't understand any dangers around him.
Our garden space is currently inaccessible to James as it is uneven and so unsafe for him to venture into. Sometimes when I lay awake at night, I dread what the next day might bring. All the horrible images of James needing surgery due to a fall or head injury.
There are many sleepless nights just out of fear of what could potentially happen, and I can’t change it.”
