My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences.
This is my latest interview in an occasional series – A Parent Perspective – with Jenn, mother to Alastair who is 17. The two of them run Smiling and Waving which sells brilliant badges and merchandise. Earlier this year Jenn and her husband Adam fitted out an accessible camper van so that their family can travel with the facilities and equipment Alastair needs. We talked about how much freedom that gives their family, but also the challenges of Alastair transitioning into adult services.
Could you describe your family?
We are Jenn, Adam, our son Alastair and our spaniel. We live in Hull, East Yorkshire. Alastair is 17 and goes to college where he’s doing a sailing course, a Duke of Edinburgh award and works in the cafe and shop there. We love kayaking, the beach and the sea, live music, eating out, socialising. We’re never really at home.
Last year we bought a panel van that we’ve spent this year converting to be an accessible crafter camper van designed around Alastair’s access, equipment and safety needs. We’ve almost finished (it’s a work in progress) and we went away every single weekend over the summer.
What does Alastair love doing?
A lot of water activities like kayaking and paddleboarding. He also loves riding his trike which gives him so much independence – he’ll stop to notice things which we would have pushed him past in his wheelchair. He also loves skateboarding and music.
At home he likes YouTube. He loves watching reruns of Rick and Morty, laughing at the same parts every time. We listen to a lot of music on vinyl and he knows all the album covers. He’s a big Gorillas fan, and Paul Weller, Oasis, David Bowie.
How do you describe Alastair’s disability?
Alastair has Angelman syndrome, which is a genetic disorder. He is nonverbal but communicates through symbols, tone of voice and body language. Alastair has physical disability and doesn’t walk a lot. He uses a wheelchair, his trike, or his walker to get around. He also has a severe sleep disorder and epilepsy.
How did you pick up that Alastair might have a genetic condition?
Alastair struggled to feed after he was born and was tube fed as a baby. He couldn’t do things other babies could do and everyone said it was because he’d been tube fed for so long but I knew it wasn’t just that.
I was going to the Health Visitors, but one of them told me I should just do more shape-sorters with Alastair. I went to the GP. It was a constant fight to get listened to and it was only when we had Alastair’s one year checkup and he couldn’t hold his head up that they finally listened to me.
Alastair was finally referred to a paediatrician and a geneticist said they were going to test for Angelman syndrome. They told me not to google it but I did, and as soon as I read the list of symptoms I knew he had it. It wasn’t a surprise when he then got diagnosed at 18 months old.
I was 17 when I had Alastair so having a baby was a big thing, and he just happened to have a disability. Adam and I were so busy working out our careers that if anything it made me more determined. I had no preconceptions about what parenting would be like. I wasn’t even an adult myself, so we’ve always grown together. Parenting doesn’t come with a handbook, no matter what your age.
How was Alastair’s school experience?
I walked into a nursery classroom at a special needs school, with the children sat in a circle doing physio, and I felt like I could have just left Alastair there and he would have been fine. He was at that school from age three to when he left at 16, last year.
Alastair really thrives being around a variety of people. When he got older at school, he was put into a Profound and Multiple Learning Disability (PMLD) class and I felt it was very segregated so he’s now at a special needs college with a whole variety of disabled people and he is loving it.
Post-19 we’re going to look to get a personal budget for Alastair. He’d go stir-crazy in a day-centre type setting so I’m hoping to continue with watersports and what he loves, but also fill his evenings. He goes to a youth group on a Tuesday night and I just found this new disco on a Wednesday night, and we go and see live music on a Thursday night. He’s a busy guy.
How does Alastair communicate?
Alastair is very good at letting you know his immediate wants but sometimes he struggles with his emotional needs. He smiles a lot but sometimes he laughs when he’s in pain, or giggles when he’s upset, and the difference between a happy giggle and an angry giggle is very subtle. People can think he’s being friendly when I know he’s saying no. Alastair really responds to tone and mood so if we see he’s angry we model the word angry but it’s difficult because we’re trying to guess his emotions. Maybe he’s more mad than angry. Alastair loves choosing his own outfits. He does that every single day even though I think some of his outfit choices are questionable!
We’ve always presumed competence with Alastair. The first time we heard about AAC (augmentative and alternative communication) and presuming competence was at a conference through a charity called Angelman UK. His speech and language therapist (SLT) said he would have to prove himself before he got an AAC device. They said he wasn’t doing enough on the one they had loaned him at school. But hearing about competence was like a little light bulb moment and made me realise the advice we’d had was outdated. I watched webinars and I found an AAC device for Alastair. People assume his SLTs got that for him, but it was us. Sometimes he’ll random press on his device, but whatever he says we respond to. One of the first words he learned was ‘come’, and I would come running, every single time. He’d wait until I’d get out of the room, just because he knew I’d come back.
We’re modeling language to him on his device and it’s really helped his understanding. Alastair wouldn’t really understand if you asked, ‘Would you like a drink?’ but if you say show him a drink, he knows. We don’t always have objects with us, but on the AAC device we’ve got a full range of vocabulary available. Maybe he’ll use it more to communicate to us in the future.
What do you do to facilitate him doing the things he enjoys doing?
We employ Personal Assistants (PAs) for him. Everything needs to be wheelchair accessible and we have to plan a lot of what we do around toilet stops and Changing Places. The van is life changing in that respect – we can go more places without needing to find a hotel or a toilet. It was a mobile Changing Places at a festival that first gave me the idea!
Alastair has funding through a personal health budget and direct payments from the local authority – two separate accounts, two separate audits – which pay for his PAs. All of his PAs have been friends of friends, and only one of Alastair’s PAs has worked in care before. We’ve got a team of three young people who have similar interests to Alastair. It can be difficult having people in your house a lot but it’s made easier by us all getting along and Alastair winding us all up.
We’re going to readvertise soon because we’re looking for somebody to add to our team but I do find it a really daunting process. The employment side is not something I enjoy doing at all. Adam’s always reminding me that I’m not an accountant and I shouldn’t be doing all the work. We’re very lucky to have a lot of different medical specialists involved but it’s also managing all of them. There’s all this stuff that goes on in the background – what you see on social media in the smooth swan gliding along, but actually there’s all this paddling beneath the surface.
Are there new challenges now Alastair is almost an adult?
Yes. Alastair’s meant to go to a respite home for two nights a month, but he’s only been six or seven times in the past two years. We wanted to move to a new respite setting for adults and the meeting happened recently with continuing health care, his adult social worker and a children’s social worker. The meeting was without us and one of the social workers didn’t agree with our plan. I got so frustrated because I can’t make even something as important as this work.
We are no longer Alastair’s legal guardians because he’s over 16 and that’s really hard. Alastair needs a filling and we had to sit with a whole panel of people to decide whether it’s in his best interest or not. We get told all the time that the systems are there to help vulnerable people who lack capacity but I want to do everything for him and instead I have to apologise that I can’t get things to work for him. Last Friday the social worker hadn’t responded to any emails about Alastair going to respite so the team cancelled his transport but didn’t tell us. Alastair was left at college and when they rang us we were an hour and a half away. Apparently he’d just been saying ‘home, home, home’ on his talker which broke my heart. I’m trying to ring everybody on a Friday night but they’d gone home. I couldn’t get anybody else to pick him up because his wheelchair doesn’t fold so we ran to get him. So much of his care has to be organised by all these different people and there’s no process for when it falls down.
How has having Alastair changed you?
Alastair has taught me to have fun. We’re playful and laugh a lot. I was so shy at 17 but there’s no room for being shy if you want to stand up for Alastair and demand what he needs. Deep down I’m still really shy and get nervous but if you saw us out you wouldn’t recognise that side of us. He’s also taught me how to advocate not just for him but for a lot of people. To stand up for everybody’s human rights.
We’ve been parents for nearly 18 years now, but this last year has been the hardest. Raising a teenager has been the best thing I’ve ever done. It’s amazing. But the transition into adult services has been the most difficult thing since he was born even though I tried to get all the information that I could. I sat down with solicitors. I’ve gone to conferences, workshops, webinars, and it’s still fallen down. I was warned about the transition process being hellish and it is.
I’ve just had a few months where I’ve not been able to work. I went back and did a Masters four years ago, and then I built up my own freelance business because working full time just wasn’t possible. Last year was so frustrating when I’d set up my own business but Covid meant I suddenly couldn’t work for for six months. That’s when Smiling and Waving came about, selling badges and merchandise. It’s for Alastair – he’s involved as much as possible in every aspect and it gives us both a kind of creative output. He designs T shirts, uses his walker to go to the post office. It’s really great for both of us.
Find Jenn on Instagram at @smiling_and_waving