As Dads go, my husband Alex is more hands-on than most. “I’m not an alpha male,” he says, and he’s right – his 6’6 stature and full beard are betrayed by his mild manner and gentle voice. Sitting together in the home we share in Brighton, Alex talks passionately about his recent experience of using Amaze, a local charity that was launched in 1997 to offer information, advice, and support to the families of children and young people with special educational needs and disabilities.
Alex recently attended one of Amaze’s six-week ‘Insider’s Guide’ courses, which offers a mix of practical skills, such as dealing with meetings or helping your child have a social life, as well as a supportive space for parents to share their experiences of raising a child with additional needs. He was the only man in the room, something he tells me didn’t bother him in the slightest. “When I went along, first of all, I thought there might be more of a mix. It’s not relevant though; we all let our guards down and it was very emotional. I’m in a similar situation to all the Mums,” he says.
The situation that Alex is referring to is that our son Bobby, who recently turned four, is currently in the process of getting a diagnosis of Autism Spectrum Disorder, or ASD. “Once we found out that Bobby was autistic we were looking at various ways of getting advice and information, one of which turned out to be Amaze,” recalls Alex, who found out about the course through our children’s preschool.
But after initially agreeing to go, in the weeks leading up to the first session, he became reluctant. “By the time it came round to starting, I didn’t really want to go. I had visions of it being really dry and people droning on about stuff that wouldn’t really be relevant to me or Bobby, and I thought, my God, is this going to be tedious? Will I feel a bit uncomfortable? I was toying with idea of just not bothering,” Alex admitted. But he did bother, and was pleasantly surprised by what he found. Rather than the classroom format that Alex was expecting, he discovered that each session was more like a form of therapy. “It was excellent. There were twelve of us and I rapidly found out that eleven of us, including me, were there because our kids are on the autistic spectrum, so it’s very relevant.”
Having a child with additional needs can be an isolating experience. During the first session of the course, participants received a copy of “Welcome To Holland,” a poem by Emily Perl-Kingsley that beautifully captures the experience of having a child with a disability. It compares it to arriving at a destination that is starkly different to the one that you expected. In recent years, the poem has become synonymous with ASD, and is often shared by parents in online forums. “Every kid has got different symptoms,” Alex tells me. “But I think there’s a camaraderie, and emotionally it’s been very good to meet up with people who are going through a similar thing.” He tells me that some of the other members of the group gave good advice, “which was quite unexpected,” he adds. “I think we all thought that we’d just be talking about local authorities and budgets for special needs, a lot of form-filling.”
The fact that Amaze takes a radically different approach to the paper-pushing that Alex anticipated is what made the experience so enjoyable. He describes how getting to know the other members of the group made digesting all of the information much easier. “When you’re in a peer support group, that makes the stuff which is actually about the structure of schools easier to discuss. If they went into all of that in the first week, and you’re sat in a room full of strangers, it would be useful but you’d probably be thinking, ‘Oh I can get this information online,’ but because the first three weeks were really about analyzing you as an individual and your relationships and how you handle situations and people, it’s very personal,” he shares.
Parents of children with autism often don’t have any inkling of their child’s condition for the first two years of their life, and even then, it can be a slow process of realization and, ultimately, diagnosis. Before he started the course Alex had misgivings about whether he was the sort of person that needed to access such services, “but then within two minutes of the course starting we were introducing ourselves and people were bawling their eyes out and you realize how valuable this kind of service it is. Now I don’t feel any stigma, and in that sense, it’s been very liberating. I don’t feel any oddness about having to chase stuff up due to the fact that we have a child with special needs, and that’s because for those three and a half hours you’re immersed in it, and the two women who run the course are able to normalize it and make you realize it’s nothing to be uncomfortable about.”
The label ‘special needs’ is not without its own issues, and Amaze often uses the less stigmatizing term, ‘additional needs’ instead. “When I hear the words special needs it takes me back to school and the kids who could be really cruel and mean. I don’t think inclusion was as embraced as it is now,” Alex says. “I always felt the term described kids with physical and mental needs, whether they were disabled or behind at school, so I think when that term was applied to Bobby, I instantly recoiled from it. I always assumed it was to do with someone’s intellect, that special needs meant you weren’t as clever as everyone else, and I think I’ve realized that it’s actually about children who need more support. That doesn’t necessarily mean that they’re not as smart, but they need additional support, whether that’s physical or emotional or educational. I’ve got a clearer understanding now.”
For any parent, your child’s first day at school is a daunting experience, but the sense of apprehension can be amplified if your child has additional needs or a disability. “I thought if a teacher or anyone ever did something I didn’t agree with, that my instant reaction would be to take him out of the school,” Alex tells me. “I was very, very defensive of my son, but I think, in terms of developing resilience and accessing help with this sort of thing, it’s made me realize that there’s a lot of help and support you can get. I feel more articulate in terms of how I would handle it going forwards instead of just getting really angry, and I think that’s primarily because I know that actually, there’s people who are more experienced than I am that I can chat with. Before I might have done something hot-headed, ill-advised and not particularly productive, but instead, you can talk to Amaze and get advice.”
And what about the atmosphere on the course itself? It would be tempting to assume that it’s a never-ending stream of tearful anecdotes and struggles. Not so, says Alex. “There’s a lot of humor in the way they present things and they’re constantly cracking jokes. There’s an endless supply of tea and biscuits; it’s very welcoming. It’s definitely not a course where you go and they just drone on at you; in fact, it’s quite the reverse.”
It’s clear that Alex has been a valued member of the course. “They give out little gifts each week and they were apologetic, because the gifts were predominantly feminine and they went out and bought a couple of men’s things for me. They say they’re pleased that I’m there and joked that they weren’t sure I’d be back after the first week.” Perhaps before starting, he wondered the same thing himself, but for Alex, accessing support through Amaze has clearly been a positive experience. “I’ve realized that raising a child with additional needs is not something me and my family need to go through alone. I had no idea Amaze existed, but I imagine we’ll be using it a lot. It’s quite incredible.
You can find out more about Amaze and the Insider’s Guide course that Alex attended at www.amazebrighton.org.uk
Stephanie Lake is a writer and stay at home Mum to her two boys, 4 and 2. Her son Bobby has high functioning autism and loves to learn about dinosaurs and prehistoric marine life. Stephanie is particularly interested in education, having worked as a primary school teacher for four years. She loves spending time with her family, as well as trail running and volunteering.
This article was featured in Issue 48 – Connecting and Communicating with Autism