Background

Archie is six and lives at home with his mum Jo, dad Jamie, big brother Max who is nine and little sister Aubrey, four in Littlehampton, West Sussex.

His big brother, Max, is one of the stars of our new TV ad with McCain. You can read Max' story here.

Jo explains that “Archie was born with something called Group B Strep, the most common infection in new-borns that leads to meningitis, sepsis and pneumonia. It's carried by the mother and I was undiagnosed and I didn't know I had it. So, when Archie was born, I haemorrhaged and I was really poorly. Then by the time it got around to treatment for Archie I'd kind of clocked things weren’t quite right.”

 

Archie’s condition and how it affects him

Archie’s first few months were constantly in and out of the Neonatal Intensive Care Unit (NICU). “He just wasn't very well at all. Then before he was two, we found out he wasn't meeting milestones. We had kind of thought; ‘Oh, he's just really poorly and he's behind because his body isn’t catching up’. So, he had an MRI and they found that he had brain damage like chicken pox all over his brain.”


“As a result of the brain damage Archie now has a diagnosis of autism, learning disabilities, immune deficiency, sensory processing disorder and some issues with his bowels. But to look at him he looks a normal child. It's quite funny because people will give you looks when you're out, especially when he's in his wheelchair. He has to be in a wheelchair for his safety, but he'll sit there kicking his legs out like a wild thing and they're looking at you like ‘that’s strange’. I wish they would just accept we know what he needs and not judge.”

“Archie is totally obsessed with numbers and Mickey Mouse. We put YouTube on the TV for him and he will flip in between episodes of Micky Mouse Clubhouse every three seconds. He really likes anything colourful, bubbles and swimming, he loves swimming.” 

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.”

Jo says that because of Archie’s immune deficiency both Max and their little sister Aubrey are vigilant of his care. “Whenever Archie is poorly, which can be quite often, they know what is happening.  And will ask if he needs to go to the doctors. I find it a bit sad that they immediately go to - OK, so where are we going? Where are we going to be? How long are we going to be there for? How sick is he? What are we looking at? And, you know, with Max it's just magnified because of his anxiety.”
 

“Aubrey, I can see already, has a really mothering side she is always asking to help. She is also his younger sister so knows how to push his buttons as well. When they were younger, we called them the twins because Archie was so small. But she’s started taking over him developmentally now and she’s starting to notice.”

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.”

Taking part in the podcast

“I am so grateful to share part of our story with Paddy and Christine on their Table Talk podcast with McCain and Family Fund. It can be isolating as a parent of children with additional needs and disabilities and you often feel like you’re in this bubble that nobody around you really understands. It’s like you’re a member of this exclusive club that you know has plenty of other members but they're all secret members that you don’t really have access to, if that makes sense.” 

“Chatting with Christine and Paddy was so refreshing. I could have a completely open frank chat with no restrictions, knowing whatever I said was met with understanding and empathy because they can relate on all levels of the conversation. It’s so nice to be able to chat away, and I mean really candidly chat, and come away from the conversation feeling good and almost refreshed.” 

“Table Talk is the first podcast I’ve come across where topics and conversations like this openly exist. I truly hope that in sharing our story it opens up the conversation for more families to be heard across all platforms and we start seeing more and more disability advocacy, and open conversations across social media.” 

“My ultimate goal when I decided to be on the podcast was for anyone listening, whether you personally identify with the podcast itself or you are listening as an ally, you can feel heard and know that our community is so much larger than you think, or you gain perspective and a deeper understanding of the disabled community. And please, please, please know that you are not alone. There is support out there, especially from Family Fund! They offer support with so many things that I would never have thought of. So just ask, they are so friendly and offer ongoing support. Because if you can make one thing easier in your life, why wouldn't you?”

Listen to the podcasts HERE (Spotify) and HERE (Apple Podcasts).

To find out more about our partnership with McCain and listen to further podcasts as they become available click HERE