Alfie is nine years old and lives in Dalkeith with his mum Amy, dad, little brother Jack and their two cats. Alfie has autism.

Amy explains that at 20 months old, Alfie’s speech started to disappear. “He only knew a few words, but he regressed to just babbling. At the time, his favourite things to do were stacking cups and putting them in size order, over and over again. He would also run around the same furniture constantly. When he was two and a half, he was diagnosed with autism.”

Daily life and challenges for Alfie

Alfie has Pica, is non-verbal and is at the early stages of using Picture Exchange Communication (PECs) and sign language to communicate. As Amy tells us, “One of the most difficult things is that Alfie can’t always tell us what he wants and he can get very frustrated at times. If he’s unwell, it can be difficult to tell what’s wrong with him and usually this involves a trip to hospital to have him checked over if he has a temperature or appears to be in pain.”

He also doesn’t enjoy going out to places where it’s very busy and noisy. Sometimes we will take him in his wheelchair or put his ear defenders on which calms him.

"As he has Pica, he is constantly looking to put things in his mouth, so everything has to be locked in cupboards and Alfie has to constantly be watched.”

Impact of Alfie’s condition

Amy explains that Alfie has recently been diagnosed with an intellectual disability. “Professionals no longer believe he has global developmental delay as his developmental age is significantly lower than his actual age.”

“He attends a special school with four other children in the class, and he gets one to one support. He’s still learning at a very early level and needs regular movement breaks as he can’t stay focused for very long. He is also not toilet trained so needs changing regularly and needs help with using cutlery at lunch time.” Alfie attends regular dental check-ups and visits from his paediatrician whilst at school. He too, has to take medication. “He takes melatonin every night to help him sleep as he is usually still running around at night time. He also takes Movicol as he has constant ongoing stomach problems, even though he is a very healthy eater.”

The impact of Alfie’s condition has meant that Amy has had to give up work to become his full-time carer. “My husband has been able to continue working. We did find Alfie’s condition quite hard to come to terms with at first as he was so young, but we both have a very supportive family who helped us through it. Now that he’s at school I have been able to get back to doing a bit of illustration and graphic design as a hobby and hopefully one day I can do it as a career.”

How we helped

Amy first heard about Family Fund through a social worker. “They told me about the charity just after Alfie was diagnosed with autism. I thought it was brilliant that you could request grants for the things your child needed.”

Over the past five years, Family Fund have been able to help Alfie with a range of grants, including an iPad, a family break, and a bike. Most recently, Family Fund provided Alfie with a grant for outdoor play equipment.

How it’s made a difference

“Alfie was awarded the iPad when he was three years old, and even now, he is hardly ever off it. He loves using various apps and watching nursery rhymes on YouTube. It really helps as I’m able to get everyday things done like washing or making dinner. He also uses it at school.”

“When Alfie was four years old we were awarded a family break, which Alfie loved as we could go swimming every day and play outside, and when he was six years old we were awarded a bike. He learned to ride a bike at school, so we got one with stabilisers and a back rest for home use and he’s doing really well with it.”

“The most recent grant, the outdoor play equipment, has been really helpful, especially due to the coronavirus lockdown. Alfie has found the time particularly difficult, as he’s usually always outside. He’s not able to go to school either, so his routine is all over the place at the moment. He was so happy when he saw the climbing frame built and wouldn’t come inside for ages.”