Bowie is eight years old and lives with his family in Essex. He is autistic. As mum Fay tells us, ‘Bowie was diagnosed at the age of three in 2014.’

‘His diagnosis took 11 months over all and he was described as being ‘textbook autistic’. He ticked all the boxes of what signs and symptoms children with autism can have and experience.’

Daily life and challenges for Bowie and his family

Fay explains that ‘our life is moulded to suit autism. Bowie is a very anxious child and he suffers terribly with high anxiety. I try to keep life as normal as possible (though I do hate that word), and we have to live life by social stories, calendars, four point sequencing boards and boards known as ‘now’ and ‘then’ boards.’

‘Visuals are extremely important to Bowie. It helps him process what’s happening and what will happen next. He needs these aids to get through every day, as well as having a managed routine.’

Bowie’s condition leads to a number of different challenges. ‘They could be as simple as the weather being awful, which means we can’t have our day out that we planned – Bowie can’t cope with the quick change to routine. It could be a simple as running out of his fridge raider chicken he loves which can cause meltdowns. It could even be not winning a game whilst he’s playing on his Xbox and due to his condition, instead of being able to communicate his frustration, which he still finds extremely hard to with his limited speech, his room will be turned upside down.’

‘Bowie’s anxiety is just as predominant as his autism. I tell him everything that we have planned, and explain it all to him. If I don’t, it can affect both his day and his sleep.’

Education and support

Bowie currently attends a special needs school. ‘It’s absolutely amazing. It’s brought Bowie on leaps and bounds. He’s gone from a small non-verbal frustrated four year old to a the confident, caring eight year old with functional language.’

‘He used to take melatonin – a sleeping medication which a lot of autistic children are known to use. Bowie also has a low immune system and suffers with a weakness in his chest. He has paediatrician appointments yearly, he sees a speech therapist within school and has a school nurse at hand should he ever need to see them.’

Although Bowie is currently eight years old, Fay tells us that his developmental age is around that of a five year old. ‘He’s currently still sitting at an early years foundation stage (EYFS) level for his school learning, with his reading levels now reaching Year One.’

 

Impact of Bowie’s condition

‘Bowie’s condition has impacted our lives in so many ways. But I don’t sit and focus on the negatives that autism brings, though there are days where you can’t help but do that. I celebrate that Bowie is autistic and I embrace it.’

‘I still try to carry out mainstream activities such as going bowling, going to the cinema, and caravan holidays with him, but I always have the attitude of ‘if it doesn’t work we’ll come home.’

‘It’s taken me a long time to get to the place I’m at now. For the first five years of Bowie’s life I really struggled. I suffered with post-natal depression when he was born and as he was going through his diagnosis, I put myself under immense pressure to put in as many hours of intensive interaction, Tacpac therapy (touch and communication through music), and the use of picture exchange communication system (PECS). It was stressful, but with the help of his amazing school, all that hard work paid off. He said his first word, ‘mum’, at his school harvest festival assembly in front of everyone in 2015. I cried my eyes out I was so proud of him.’

Fay explains that she also suffers with her own health conditions. ‘I have two slipped discs in my back, spinal stenosis and a slight curvature of my spine. Over the years it’s got worse and I’m limited to certain things I can do with him. But we are both managing things so much better and we’re a team. Bowie is my best friend and I’m his.’

 

How we’ve helped

Fay first heard about Family Fund through First Step, Bowie’s former special needs pre-school. ‘A few of the mums told me about Family Fund and how it worked and the support that could be provided and I was blown away.’

Family Fund have helped Bowie over a number of years. ‘When I first applied we received help with an iPad which has helped Bowie’s communication immensely. Following the iPad we’ve been able to apply for a Smart TV, which helped Bowie carry out some home learning through the TV. Bowie was also awarded a swing set, which was perfect for him as he is sensory and loves to have a place he can go by himself and ‘swing it out’ as I call it.’

Bowie’s most recent grant was a computer.

 

How it’s made a difference

‘As we all know, Coronavirus is still very much a part of all our lives, and by receiving the computer through the pandemic, it allows Bowie to have his own space to complete his home learning. He was so happy when he received it and even said it was like ‘the best present ever.’ Having this technology to help him progress throughout the summer and beyond is life changing.’

Family Fund changes people’s lives.

'I’ve been the mum at the bottom of the barrel who uses food vouchers to feed her son. I’ve been the mum who has put layers of clothes on us both during the winter because, at the time, I couldn’t afford to put on gas on the meter.’

‘Items such as an iPad, a TV for a computer are things I would never be able to afford on my own. Family Fund give children the chance to progress by receiving equipment that helps them, whether that be through stimulation physically or mentally.’

‘I will always be grateful to Family Fund and I couldn’t recommend them enough for their support.’