Background

Max is nine and lives at home with his mum Jo, dad Jamie, little brother Archie who is six, and little sister Aubrey, four in Littlehampton, West Sussex. Max is one of the stars of our new TV ad with McCain (click here to read more about the ad). He was diagnosed with autism and Attention Deficit Hyperactive Disorder (ADHD).

His little brother, Archie, was born with Group B Strep, the most common infection in new-borns that leads to meningitis, sepsis and pneumonia. You can read Archie' story here.

 

Max’s condition and how it affects him

Jo explains that for her, Max’s diagnosis came as quite a shock. “I remember I sat there and I cried. The nurse said to me; ‘It's OK, some people can take this diagnosis hard.’ But I wasn’t crying because he was diagnosed with autism, I was crying because I felt like I'd done him a disservice. Max always puts Archie first in everything and I thought it was anxiety, but his anxiety was covering his autism. He has also been diagnosed with Attention Deficit Hyperactive Disorder (ADHD).”

“When Archie was little, he really discounted Max for a long time, but Max persevered and was like, ‘No, you are going to love me.’ and now they are best friends. Max is so proactive about being the voice for his brother that during lockdown he did an interview with The Sunday Times about being a young carer. Following that the SIBS charity got in touch and said how amazing it was that he had spoken out and asked if he would like to be part of some online sessions. In the sessions other children opened up and said things like; ‘Oh my brother does that too’ or ‘I’ve gone through something similar’. By him being so open he allowed others to do the same and removed the taboo around the word disabled for a little while. Since then, he has done an interview on behalf of the SIBS charity with The Sun online and been in a video with their ambassador Jo Whiley for their 20 year anniversary.”

“I think when Max grows up, he would like to be a YouTuber, he really likes documenting everything. He will walk around talking to himself doing his own little things. He also loves live action and adventures, recently he went to The Bear Grylls Adventure and did rock climbing. Oh my god, he was living his best life. So, if he could do something that combined the two, he would love that.”

 

Daily life and challenges for the family

Jo originally trained as a Special Educational Needs (SEN) teacher. “After I’d graduated I kind of thought I knew everything and had preconceptions of what work was going to be like. Then I became a mum of two children with disabilities. For example, I’ll hear comedians make jokes about people with disabilities and it shows that even now, there is a lack of disability awareness.”

“Things are flipped upside down, I thought I would be teaching by now and I don’t. I can’t work because I am Archie’s full time carer. My health has taken a toll, so now I have arthritis from lifting Archie. Then last October my husband had to stop working as well because our local support was stripped back. We lived in East Sussex and during pandemic the local authorities’ funding was stripped back. We got a letter that basically said if your child has an Educational Health Care Plan (EHCP) the law states we have to follow that plan, however, they've also told us that if we don't follow the EHCP, because of the pandemic, there will be no repercussions. So, Archie didn't go to school. We got food vouchers and our local authority dropped off a food box. We got told we could look out of a window if we needed to. And that was it.”

“We received so much conflicting advice to keep Archie safe. There was a point where police were stopping and checking people in cars and if you were driving outside your area, you could get fined. In the end we had to have a letter that stipulated Archie was shielding, from a psychologist at a service called FISS, Family Intensive Support Service. We took that letter out with us and we would drive around in a loop just to give the kids a change of scenery.”

“In the last month we have moved to West Sussex. We are closer to my parents and the local authority are so much better. They are like; ‘You need help? Cool, we will come right out and assess you on a case by case basis.’ So now we are just waiting for Archie to get a school placement.”

 

How Family Fund helped

“We have applied to Family Fund four times now. The first time our washing machine packed up, Archie doubly incontinent, so our washing machine is constantly working on rotation. We actually ended up getting a 9KG washing machine just so that it could support big loads. And I know it sounds odd, but it actually helps financially with a bigger washing machine because you use it less.”

“Then our cooker packed in and Family Fund helped with that. The kids eat so much, it was really important for us to get a double oven. It came with a five year warranty as well so give us that peace of mind in case anything goes wrong.”

“Family Fund also helped us get Archie a better mattress. The boys share a room but Archie doesn’t sleep at all. So, most of the time either my husband or I end up in there with him to try to keep him clam for as long a possible, having a double bed has really helped.”

“Then this year we received a grant for an iPad which meant we could get special apps for Archie and school can send over links. Even though he wasn't at school, he could participate. He's a really visual person so we get specialist videos up on there for him. It’s also got a really nice hard case for when he kind of lashes out and launches something across the room, it is safe.”