Harry is five years old and lives with his mum Vicky, dad Peter and older brother Freddie in Northampton. Harry is autistic, as is his brother Freddie. Vicky tells us that Harry was diagnosed when he was two and half years old, whilst Freddie has recently been diagnosed with attention deficit hyperactivity disorder (ADHD) and is suspected to be autistic.  

‘He has yet to be fully diagnosed, as there is such a long waiting list, but professionals who work with Freddie have accepted that he is autistic.’

Daily life and challenges

Vicky explains that one of the main struggles of having two children who are autistic is other people’s expectations of them, and fighting for the support services they need.

The boys are beautiful and happy but it can be hard for them in a world that often won’t make small adjustments to help them cope.

'It can feel as though they should be expected to fit in and be something they are not.’

Home is the boy’s safe space. ‘We want our home to be safe for them, where they can be proud and confident in who they are. It can be hard to achieve it – we want to make improvements on the house, but it’s difficult with little ones that need protecting all the time.’

‘The recent struggle, of course, has been with the Coronavirus lockdown. Harry and Freddie love being outside and they don’t understand how to regulate themselves when they are stuck inside. For them it’s a huge break in routine, especially with the absence of school.’

Impact of the condition on Harry and Freddie

Harry is non-verbal. ‘Communication is different for him. With patience and a lot of creative thinking, we work out what he is trying to say. Harry has a special interest in numbers and letters, and likes to line things up and organise them. He is very affectionate and has recently started giving his brother little hugs.’

Harry currently attends a specialist school where he has been able to flourish, but for his brother Freddie, the process is still very difficult. ‘Freddie is still struggling in main stream school. He doesn’t meet the milestones of his peers, but he has such a beautiful way of thinking. He is so clever in his interests, which are mostly animals, insects, plants and bugs. Sometimes things can be difficult for Freddie, he has all these needs of his own, but often has to wait for Harry, who doesn’t understand how to keep himself safe.’

‘He is a wonderful big brother.’

 Impact of the condition on the family  

Vicky tells us that it can be ‘heart breaking, seeing my children struggle when the world won’t understand them. It can be stressful fighting for help, especially as I’m dyslexic and find the paper work and legal wording difficult. I don’t get to look after my own medical needs and I can’t work full time. But it’s not the boys that make mine and Peter’s lives this way.’

‘Life changes when you have children and you never know who they are going to be. Our lives are very different from others, but we work together to make sure we all have what we want from life.’

Peter has recently started his new job, and Vicky has returned to college. ‘We are happy and lean on each other through the hard times.’

How we helped

Vicky first heard about Family Fund through school. ‘We mentioned to school how hard it is for us to get out of the house – our garden wasn’t safe and we’d often end up having to stay in the house as I couldn’t take the boys out safely on my own.’

‘We told them we had plans for our garden as both Harry and Freddie love being outside, but we weren’t able to start work on it properly. We’d worked so hard to afford our first home but we were struggling to fix it up.’

The school told Vicky about Family Fund and Vicky applied for a grant towards fencing for the back garden.

 

How it’s made a difference 

‘The garden was a mess when we moved in. We tried to do some work on it so the boys could play out but it was such a big job for us. When the Coronavirus lockdown happened, it was difficult to take the boys out on walks as they don’t understand social distancing.’

‘Having a safe garden means they can be free to play, jump around, be excited and make noise with no judgements or dangers. Being outside makes them so happy and it means I can watch them from our kitchen whilst I get some work done and I know they are safe.’

‘Family Fund have brought a lot of happiness and I can’t tell you how just how much we really appreciate it.’