As dads everywhere celebrate Father's Day, we are proud to have supported so many RAF dads and their families. One such dad is Sergeant John Wright who is currently serving at RRH Buchan. We recently adapted John's home to help with the care of his son Lewis who has complex needs. In this blog, John shares with us how we were able to make a difference.
On 2 March 2009 myself and my wife Mary became the proud parents of a baby boy we called Lewis. At this point the roller-coaster of 'Life with Lewis' began for the family as he was born with a complex seizure disorder.
From birth Lewis suffered from severe epilepsy, which in the early years of his life resulted in prolonged hospital admissions and some emotionally testing times for Mary and I.
After what seemed like a lifetime of trying different medicines to bring his seizures under control, a successful medicine combination was eventually found and his seizures were brought under an amount control after almost two years.
Despite the medication, Lewis still has seizures and consequently, he carries rescue medication, oxygen and a suction machine with him at all times.
In addition to his seizures Lewis suffers from profound learning difficulties, limited mobility, self-injurious behaviour, Autistic Spectrum Disorder (ASD), is non-verbal and is also fed via a tube known as a mic-key button in his stomach.
Furthermore, Lewis has low immunity and even a simple common cold in winter can have an adverse effect on Lewis and often develops into much more serious condition such as bronchiolitis.
With no known cause to Lewis's condition, he is known as a SWAN (Syndrome Without A Name) child along with many others around the country.
Due to his Special Educational Needs (SEN) Lewis is unable to attend mainstream school but loves the routine of going to his SEN school where he gets the best education possible. He has a limited ability to communicate by sign language, and currently we are working with the school towards using a communication app on an iPad as a method of communication.
As with the majority of ASD sufferers, Lewis benefits greatly from routines, and as such school is a great source of this for him. However, the school holidays can often prove very challenging for him. The sight of his school uniform is an immediate indicator to him that today is a school day, and Lewis has been known during the holidays to fetch his school uniform indicating that he wants to go to school.
As a family, we moved into what we perceived to be our dream home in October 2012, with a view to adapting it to meet the needs of Lewis. We began adapting the house by converting the family bathroom into a walk-in shower room, fitting lots of sensory toys into the house, and obtaining a “safe space” sleeping area for Lewis.
The safe space was an absolute blessing to the family as Lewis has no perception of danger and could easily come to harm if he was to get up through the night and decided to move around the house.
Prior to getting the safe space, many sleepless nights were experienced. We were then dealt with a crushing blow when we found out that were unable to fit a stair lift into the property (despite being told earlier that it would be possible) and this prompted us to move again in October 2015 into our current home.
Constantly purchasing equipment for Lewis and needing to move house twice in such a short space of time drained the family finances making it difficult to fund any conversion to the new house and it was at this point that I turned to the Royal Air Force Benevolent Fund for assistance.
Liaising closely with Warrant Officer PMS and Officer Commanding PSF at Royal Air Force Boulmer, I completed a single application form and submitted it along with supporting letters from medical professionals. My application was then processed at Boulmer and sent onto the Benevolent Fund who presented us to Grants Panel in July 2016, acting as our voice and telling our story.
Adapting the home
Lewis was awarded a substantial grant that has allowed us to transform our family life by means of a garage conversion. The garage is now well gone and in its place is a bedroom fitted with an array of sensory items including an interactive projection system (similar to those found in hospitals and specialist play centres), a bubble panel and a fully accessible shower room and toilet.
Within the bedroom there is a new safe space style bed which will be suitable for Lewis into adult life. Lewis also now has his very own iPad with a communication app which will hopefully become a voice for Lewis in the future.
Following completion of all the work in the garage, Lewis is now able to access to all of his sensory items without the need for a stair lift. During the day the whole family are now all on the same floor, making simple every day tasks not just easier, but possible. Whilst Lewis is in his bedroom playing with his sensory toys, we know he is safe, and simple things like preparing a meal can now be done. Prior to the conversion, this would not have been possible as we would have been upstairs supervising Lewis.
Lewis, now aged eight, also loves being outdoors and we are always on the lookout for accessible routes where his off-road buggy or bicycle trailer would manage the terrain. We pride ourselves on doing as much as any other family with children, and Lewis in the last year has enjoyed ice skating, celebrated his first Halloween outside of hospital by dressing up as Batman, had his first birthday party, went sailing and learnt the love of a selfie with Mum.
Thank you for taking the time to read the story of Life with Lewis and I hope that this blog raises awareness of the Royal Air Force Benevolent Fund and how it may be of assistance to you and your colleagues who are all members of the Royal Air Force family.
By Sergeant John Wright