As part of the McCain partnership, we catch up with Perth-based parent Nicky to discuss the reality of the disability price tag many families face, tips and advice. 

I was very nervous to share my story as it's not always sunshine and fun times. But…unless we all start talking more openly about it, nothing will ever get better for the thousands of people and families struggling out there.”

Logan is 16 and lives with his mum Nicola and older brother in Perth, Scotland. Logan’s primary diagnoses are Attention deficit hyperactive disorder (ADHD) and autism, he also has epilepsy, Tourette’s, sensory issues and dyslexia. Nicola says: “Life is challenging for him I guess, but he is a great advocate for his conditions and I encourage him to be so.”

Logan’s condition and how it affects him

Nicola explains how Logan’s senses can be different to those of other teenagers. “He's got ridiculously good hearing; he can hear sounds at lower and higher frequencies than anybody I've ever met. Logan makes so much noise and yet I have to practically whisper when I talk to him, if I don’t, he says it sounds like I’m shouting. He wears noise cancelling headphones to help when he is out and about and feels safer when he has them on.”

“He's got a 26 year old brother and managing the two of them together by myself is a very difficult dynamic. I have to keep the noise down for one whilst the other wants to do nothing but make noise. I could probably be like a UN peacekeeper or something.”

“Sometimes I think it’s a contradiction that having autism means you need routine. You do need it, but only so much, you also need stimulation and interesting things as well. Like Logan loves playing on his Xbox, it’s his favourite thing to do without a shadow of a doubt. He has a few people from school on there from school, but he doesn't really have friends, just people he talks to in America. It’s mainly a fantasy world, somewhere he can escape into where he can control things. It's also good for his hand eye coordination.”

Daily life and challenges:

“When Logan was a baby, I knew nothing about his condition, but like most parents in my position, I set out to find everything I could. I did loads of research and went to all these groups, clubs and parenting courses. You name it, I did it, and I think it's changed me as a person, unbelievably so. I realised I’d grown up with it and didn't know.”

“It was because of Logan I actually got diagnosed with autism and several co-morbidities at the age of 45. Everything made sense when I was diagnosed, it was brilliant for me. It also means that I understand him and can help him, because I've been there, done that.”

Nicola explains how raising two boys with autism has impacted her financially. “When Logan was younger, he needed specialist medical equipment and around that time his DLA was reduced, this meant we were no longer eligible for financial support in that area. I had to start buying the medical items myself, at the cost of £5 for eight, but because of his epilepsy he would constantly move about in the night and get through loads of them. In the end he I had to speak to my local MP who helped me get the DLA rating put back up.”

“He goes through a huge amount of clothing; he is six foot five and outgrows everything almost every three months. He can only wear one specific brand of trousers from a specific place and shoes, he will only wear one pair of shoes so I have four pairs of the ones he likes in different sizes in my cupboard. It feels constant, I don't think people realise the extra costs that come with that, and the extra stress and worry.”  

Nicola has always encouraged Logan to be an advocate and feel comfortable to talk about his condition. “I think it’s better to talk about conditions and make people aware of them. I've taught him not to be ashamed, none of this is our fault and you know we're doing the best we can with it. Love your child for who they are. They can still do amazing things; you just have to look at it differently that's all.”

“Now that Logan is getting older, I don’t have to go back and forth to school with him as much and it’s meant I’ve been able to go to university to study film and media. As a child I didn’t communicate to the age of six and film and TV was how I communicated. My mum gave me this little camera and I would just make like little animated films, that’s how I expressed myself. Even now, if I need to understand something I'll watch a film about it or a YouTube video, or play people a song to let them know how I am feeling. That’s how I absorb information.”

I hope my degree will work towards helping people see how Logan sees the world and how I see the world. We see things very differently from most people and our anxiety suffers because of that. You can be at school or in community groups and look so competent and composed and be absolutely dying inside. And I don't think people really truly understand that Logan’s social anxiety is truly debilitating at times.”

How Family Fund helped

Nicola first applied to Family Fund when she became a single parent in 2011. “We moved to Dunning, outside of Perth, and it was at that point that I was like; I really need some help, I was really struggling and low.” “I became part of Perth ADHD group, I'm actually a mentor for them now, but I use their services and they recommended Family Fund. I thought what’s the worst that can happen, they say no? Family Fund has been like this lifeline for me for the last 10 years.”

“Family Fund helped us with money for day trips. It meant I could take Logan to places without his brother, which then gives his older brother some much needed space at home.”

“Then when my tumble dryer broke last year, I freaked out. I have endless washing and live in Scotland, there’s never an opportunity to dry something outside! I hadn’t thought to apply to Family Fund that year because we hadn’t been doing anything during covid, we’d all been stuck in the house. I got upset and was on the phone to the ADHD group and again they said “Have you tried Family Fund?” I didn’t think you helped with those sorts of things, but within two or three days I had a new one.”

“I can't even, I don't even know how to put it into words how important that has been for us.”

Taking part in the podcast

“I thought the podcast was really good, a relaxed chat with two lovely down to earth parents who are in the special club of parents who know how hard it can be. Paddy and Christine are amazing advocates for parenting children with additional support needs and came across as very genuine and just wanting the best for their kids.”

“I was very nervous to share my story as it's not always sunshine and fun times. But I am incredibly passionate about changing things for people with neurodivergent conditions and unless we all start talking more openly about it, nothing will ever get better for the thousands of people and families struggling out there.”

“I hope other families get the ‘me too!’ moment, I hope they don't feel like they are the only ones dealing with this and that you can learn ways to make things easier for you and your children, I hope it encourages more people to talk about diversity in all its forms and I hope our story can bring hope to others and maybe a smile to someone’s face.”

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