Charlie is ten and lives with his Mum Katie and Dad Andrew in Bradford. Katie told us 'He failed every health visitor check, and on the first day of meeting our new paediatrician she gave us some leaflets and said I'm 98% sure Charlie is autistic. So, we started the autism journey and he was diagnosed really quickly at three and a half.'
Katie explains that because Charlie's condition is invisible and he is verbal, he is often misunderstood. 'People think he understands much more than he does. It's a bonus that he can speak, but it disguises his difficulties. Anyone who meets him for the first time and sees his Education and Health Care Plan think they have got the wrong child.'
Mum, Dad and Charlie are always together, their day-to-day life tends to be similar as Charlie is very routine driven. 'It might seem boring to someone else but we've got to be pretty regimented because he will easily take over, he likes to be in control. He gets up at the same time, has the same breakfast every day, we get him ready for school. When he comes home, he gets reward time on the iPad or his computer, tea time, then it's quiet time again and bedtime.'
'But recently the Coronavirus Lockdown has been really tough. We all had to shield because of my health, I have a life-threatening condition, so Charlie's had to shield as well as his Dad. That was difficult we had to home school him but it didn't work. For Charlie school is school and home is home, so he couldn't get his head around that change to routine. His behaviour changed during lockdown with meltdowns and lots of crying, he needs that structure and specialist input.'
Charlie was born at 32 weeks under dramatic circumstances. 'I went into respiratory arrest and he had to be delivered by emergency c-section, we were both starved of oxygen. The doctors discovered he had Echogenicity of the lateral ventricles of the brain, which is brain damage. When we got home, we noticed he wasn't hitting his developmental markers, wanted to lay down, didn't want our attention, didn't walk or sit up, he was really delayed.'
'We had always noticed red flags but we just put it down to his prematurity. It got to about two when it was really a turning point, his behaviour was really extreme, he had meltdowns, stopped eating and would self-harm trying to pull his toes off.'
When Charlie went through initial assessments Katie says the results did shock her a bit. 'I was quite defensive when they read through the notes and listed his struggles, I thought why did it have to be my child. But it's made me realise, although he does need constant supervision, I wouldn't want him to change. He's got so many qualities that I don't see in other children.'
'He's got a great imagination, he builds worlds and loves ornaments, he doesn't just play with normal toys. When he builds his worlds, he stands flapping his arms, that means he's really happy with them. Watching him do that is really quite special. We don't know what's going on in his mind, then there's this crazy little world that he builds. He loves drawing and in particular maps, they are so detailed.'
Katie and Andrew struggled to take Charlie out and about because he would run away with little fear for his own safety. 'Our first application was for a special needs buggy called a Trotter. It looks like a mini wheelchair, but grows with you and he can still fit in it.'
Over the years Katie applied to Family Fund for a variety of different grants. 'The deep pressure vest really helps with concentration at school. Pressure calms him and it makes him feel like he's getting a hug from us.'
'Charlie is also obsessed with his iPad and his touch screen PC that he's a whizz on, he does presentations and little shows on it.'
'Before we had the buggy Charlie wouldn't go anywhere. Now he says he feels safe in it we have had the confidence to travel abroad as a family, we would have never gone on holiday before that.'
'Charlie didn't know how to use a PC or iPad before; at school he had a very short attention span and didn't like writing. He's now showing school how to use iPads because they are just bringing them in for all the children. The PC has been useful for us all, we use it a lot, but it also takes the strain off us as he needs to be watched constantly 24/7, the computer gives us the peace of mind that he is safe. He's really proud of the Minecraft worlds he builds. Together Charlie and I build different worlds, talking it through and everyday he will think of something else he wants to add to it.'
Charlie's pack was chosen as the winning design as we loved his creative flair and great sense of personality. His self-portrait and illustrations added some special touches to what is still unmistakably a Home Chips pack. Well done Charlie!
