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Navigating the Social Desert of Special Needs Parenting

Photo by Lubo Minar on Unsplash

Picture the scene. It’s March 2010 and still chilly enough to justify lighting a fire. I’ve made a proper pot of coffee to impress the social worker and me and my then husband are smugly completing our pre-adoption assessment. We’ve been asked to make a list of all our friends. Adoption is going to be difficult, apparently, so we have to prove that we’ve got a decent support network. There have been tricky questions as part of this process, but this is not one of them. We’ve made a long list.

It’s no exaggeration to say we were good at the whole community building thing. And I mean really good. When we moved into our current home, we had fifteen people round for fish and chips before we actually had furniture for anyone to sit on. Two weeks later, we invited everyone in our new street round to ours for a housewarming party. There was a string of people who lived with us when relationships broke down or they just needed a place to come and recover. Our parties were legendary. We had an open house at Christmas. If there were new people at church it was usually us who asked them round to dinner first. We got on so well with the neighbours on one side that we’d taken down the fence so we could share our gardens. When the neighbours on the other side replaced their fence, they put a gate in it, to make fetching wine easier on sociable summer evenings. It didn’t feel like we tried to make any of these things happen. They just did. It was who we were.

We didn’t just give support. We received it too. When my husband was in hospital with a brain tumour, the love we got from friends was humbling. Dozens of phone messages. Almost too many to manage. A crowd of people round his bed at visiting time. For weeks. One couple who told us they were putting aside some money, in case we needed it for any reason. When it turned out that the waiting list for the treatment my husband needed was 18 months long, another friend did some research and discovered we could get it quicker if we took a trip to Sweden. I rang the couple who were putting money aside. They contacted people in our network. Four days later we had the funds we needed to book a medical mini-break to Stockholm.

So when we decided to adopt, social support was not on my list of concerns. We had it in bucketloads. We had lots of supportive friends praying for us, cheering us on. I knew that our network would change a bit when we became parents, but I was pretty confident that we would make new friends too. I imagined befriending other parents at the school gates, hosting play dates, seeing more of our friends who had kids.

Looking back now, that era of rich social connection seems an age ago. There is not a corner of my social world that hasn’t been affected by what is sometimes euphemistically referred to as ‘social thinning’ since my sons came home in 2011. If our social network was like a lush woodland before, what followed adoption was brutal deforestation and drought. It wasn’t long before we were living in a social desert.

Don’t misunderstand me. There were a few oases in our desert. Friends I love. People to whom I am hugely grateful. But the comparison with how life was when we were answering those pre-adoption questions was stark. The distance between one oasis and the next was often horribly long and lonely.

I know my experience is not unique. In society at large, there tends to be a fairly romantic view of adoption. Kind hearted grown-ups, lovingly offering a home to unfortunate but grateful children who will push the boundaries to make sure they aren’t going to be abandoned, and then settle down into blissful, well behaved gratitude. But the truth is that the impact of poor attachment and early childhood trauma is deep and wide. It leaves devastation in its wake that affects everything and doesn’t just go away when children move in with their newly adoring parents. Most adopted children face huge emotional and psychological challenges that will still be with them in adulthood. They find navigating life incredibly difficult. And, in common with many children facing the challenges of living with additional needs, they frequently find coping strategies that cause chaos for those around them.

There is an assumption that good parents have well behaved children. Everything else being equal, there is some truth to this. It’s not a one-to-one correlation though. Some very bad parents, for example, have children who behave well because they are terrified and it’s an essential survival strategy. But those families don’t get stared at in supermarkets. If you have a child with, for example, autism or attachment disorder, or even just lots of energy and an interesting personality, you will have long ago ditched the idea that there are simple, easy to follow parenting strategies that will result in socially acceptable behaviour in any given circumstance. Most of the people around you, however, will still be living with the assumption that a child behaving in ways that are not regarded as socially acceptable is evidence that their parents are lazy, immoral, incompetent or all three. And even though you may know at one level that this is rubbish, you can’t live in a society all your life where these things are held to be true and not be vulnerable to feeling shame when you find yourself cast in the role of ‘that parent’. Add all these things together and you have a perfect storm. A storm that leaves many families of children with special needs facing shame and isolation.

Not long after the children came home, the neighbour put the fence back up. Not long after that, he came round to tell us that he was moving because he didn’t want to live next door to us anymore. New neighbours on both sides invested in taller fences. Friends with kids would meet up with us once or twice and then quietly stop. Later it would leak out in conversation that their kids didn’t really want to meet up with ours because they found them too difficult. Friends and family were initially enthusiastic, but enthusiasm quickly cooled to be replaced by undercurrents of judgment. One family we used stay with regularly, began inventing non-existent imminent home renovations whenever we suggested we might visit. The group we used to join for a Christian conference every summer asked us to stop coming because we were spoiling other people’s summer holiday.

The local community that before felt warm and embracing began to feel hostile and unwelcoming. For years, my son was banned from the local newsagents. We would be intermittently informed by our social worker that there had been a call about us from ‘a neighbour’, leaving us guessing as to which neighbour it might have been. I hated school drop off and collection. The judgement of other parents was palpable. Usually the hostility was unspoken. Sometimes it was open and I was shouted at.

Our reduced energy levels made investing in friendships sometimes an ask too far. Having people to visit or to stay was so difficult for the kids that it largely wasn’t worth the stress. The church we attended was initially very enthusiastic about our new family. But their enthusiasm soon cooled and I was asked if I could either make my children behave more acceptably or find somewhere else to worship. So we left. Finding somewhere else turned out to be far from simple and in the end I stopped trying. Church, in one form or another, had been a central part of my life for as long as I can remember, so that was no small loss. My husband couldn’t cope with the challenges of adoption parenting and became an ex-husband. A string of problems with school meant that maintaining a professional life became impossible and I found myself giving up work completely.

Creating new social networks was far harder than I’d imagined. I met some amazing fellow adopters and when I was free to meet with other mums by myself, that was great. Socialising with kids in tow was rarely feasible. On the fairly rare occasions we socialised with families whose kids were without special needs, things were tricky. But try and get together with a fellow adoptive family, and carnage ensued. Somehow my kids and their kids always seemed to create a perfect storm. Dysfunction meeting dysfunction and causing chaos.

My boys have also experienced social isolation. There were never any invitations to tea from school friends. They were never on anyone’s birthday party list. At one point it turned out that parents had been telling their children not to play with my sons at break time. When my oldest wanted to take just one person with him to Alton Towers to celebrate a birthday, there was no one who would accept the invitation.

We tried a range of extra-curricula activities. Generally my oldest found them all too overwhelming and opted out, while my youngest would be asked to please not come back. The local gym terminated our family swimming pass. Young son was expelled from Beavers. They were deemed too disruptive for Sunday School. We tried cricket, martial arts, trampolining, football training, ordinary scouts, sea scouts, youth groups. None of them worked out. Visits to parks and play places and anywhere with kids always felt like a lottery. Experience soon told me which parks were best for playing this lottery. I learnt to pick the places where the disapproval of other parents was expressed in well articulated disdain rather than angry swearing with threat of violence.

Social isolation didn’t happen all in one go. It was a bit at a time. Gradually my world became smaller and smaller. And it wasn’t just that other people were becoming more distant. Social isolation is internal as well as external. Shame was making it harder and harder to feel like I belonged. Sometimes I knew I was being judged and looked down upon. Often I was just assuming that other people thought badly of our family even when I didn’t know that was the case. It became my default assumption. I found it difficult to parent the way that I wanted to if there were others around to see. I knew that it probably looked as if I was simply allowing my children to do what they wanted. If other adults butted in and told my children off, it knocked my confidence and I didn’t know how to respond.

After my son was banned from the shop around the corner, I stopped going there too. I was annoyed they hadn’t spoken to me about it, but mainly I was simply too embarrassed. Perhaps there were parents who would have happily chatted to me at the school gates, if I’d made the first move, but it’s difficult to start a conversation with someone if they don’t look friendly and you think they might be gossiping about you behind your back. I felt like I’d shrunk inside. I didn’t want to live in my house anymore. I wanted to disappear to somewhere else, where we wouldn’t be recognised. I hated going for walks in my neighbourhood because I didn’t want to be visible. If I saw people I recognised, I assumed they were thinking badly of me. That they would rather I wasn’t there. I couldn’t even bring myself to join the locality Facebook group. I was painting myself into a smaller and smaller corner. And it was a pretty miserable corner.

The turning point was a conversation with a family therapist which helped me to see just how small my world had got and how hemmed in by shame I had become. I realised that I wasn’t confidently being myself.

When I stepped back and thought about it, really thought about it, my lack of confidence simply wasn’t justified. I know why I parent the way I do. It’s based on research and experience. Lots of it. I’ve attended courses, read books by leaders in their fields, shared experiences and wisdom with other adoptive parents, drawn on my own professional knowledge and skills. I know about psychology. I have a deep, hard won understanding of attachment. I have the experience of years of living with my sons. Years of listening to them, working hard to know them and understand them. Years of trying things out, noticing what works and what doesn’t. I’ve had therapy and worked on my own stuff so that most of the time my triggers don’t get in the way.

Malcolm Gladwell (in his book ‘Outliers’) makes the oft quoted observation that people who are exceptional in their field have at least 20,000 hours of experience. I reckon I have about triple that. By anyone’s standards, I count as an expert practitioner. And yet I was feeling shamed and diminished by encounters with strangers who had spent twenty minutes with us on a bus, or professionals in meetings who flashed their fancy titles about, refused to consider that my opinion might have validity and referred to me, patronisingly, as ‘Mum’. I decided it was time to occupy my own space and to be myself. I didn’t need to bend myself around the opinions — real or imagined — of other people. I didn’t need to apologise for existing or feel ashamed that I lived in my community. I certainly didn’t need to apologise for being a competent parent. It was time to stand tall — which was a terrifying prospect. Knowing it was going to be a case of ‘fake it ’til you make it’ I started to act as if I was unashamed and confident. Sometimes that was in little ways. Like walking tall and smiling at people when I was out and about. Sometimes it required a bit more assertiveness. I stopped just letting people take over the parenting role when they thought I wasn’t doing it right and did my best to help people understand why I handled things the way that I did. I deliberately stopped assuming that people were thinking negatively about me. After all, I wasn’t inside their heads and it was doing me absolutely no favours. Giving up mind reading other people left me free to notice that sometimes people weren’t appalled by my parenting. Quite often they were deeply impressed by my patience and empathy. That, in itself, helped me to be more confident.

There was a morning when a woman who lived around the corner took a detour on her way to work in order to drive down my street and shout at me because she’d seen my son on his scooter outside the school gates. She thought it was unsafe and if it happened again, she was going to report me to social services. What, I wondered, was the most positive way of viewing what she’d done? I might not have appreciated her intervention, but she had gone out of her way to come and find me. She might have been angry and aggressive, but she was definitely concerned.

That evening, I worked out which was her house and went round to thank her for being so concerned about my son and for taking the time, when she was obviously busy, to come and talk to me. I got invited in and we had a long chat. I was able to explain that while I would have preferred for my son not to be out and about on his scooter outside school, I knew from experience that he was using his scooter to regulate his mood and that trying to control his behaviour at that point would be the least safe thing I could do. Whether or not she believed me, I have no idea. But her husband said he thought I was brave to go and talk to them, we had a good conversation and instead of becoming more scared and isolated, I had made a connection with people in my neighbourhood. I had stood my ground. It felt terrifying but good.

Looking back, my reflection is that although the outward reality of my life didn’t change greatly, I was at least was able to replant trees in the parts of my social desert that I had unwittingly deforested myself. A few years on, things have shifted. Parenting teenagers brings challenges, but it’s not nearly so physically exhausting. I have energy left over to engage with people and inviting people into my home has become easier, now that the boys are a bit older. Of all the changes, the one for which I am most grateful is that I am no longer carrying the shame that was once so crippling. Once a month I host an open home for local parents who have children with special needs. And I advertise it on the local Facebook group that I didn’t dare join for so many years. First published on Catherine's blog on Medium.

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