Over & Out- Parent Story

I seem to have lived my whole life waiting. From the beginning my children have needed extra help and all I seem to remember is pleading to doctors, paediatricians, therapists, teachers in schools and all sorts of people, looking for some sort of help. Throughout the years, I have gathered that children are supposed to be entitled to help. I gather I’m supposed to be entitled to help too, as a mother, as a family but I don’t really see it that way.  My own health has suffered over the years, I’m a single parent and have become more isolated as the years have gone by. My personal resolve has been drained to the point that I no longer look to the future I just see the end of the week.  I haven’t felt that I have cared for my sons in the way that they deserve. My boys struggle with a lot of things and still don’t express themselves very well, it’s very difficult to struggle with language and communication both from my own failing to achieve effective communication even after a lifetime of trying and their own frustrations with being misunderstood. 

How do you think that makes me feel as a mother? They gave up trying a long time ago, but there isn’t even an opportunity to argue. It goes silent and they retreat to their own world of isolation which is usually peering at a screen. I totally get them feeling frustrated and getting angry sometimes and I feel so guilty about that. It’s awful having to repeat your story 1000 times and the story gets longer as the boys get older, so it is even more eventful.  They’ve kind of come through school now and I don’t even know how in some ways. The years have passed, school has come and gone and they’re no better off. They haven’t enjoyed the experience and that makes me wonder why I have put them through such pain and suffering. They didn’t have friends, were bullied relentlessly and people set bars and targets for them that they could never achieve. Including me. And their dad; for a time. He couldn’t hack it and we split up eventually. I can’t blame him, it’s so hard, there’s no road map for this journey and we drifted apart. How do you know as parents that you’re doing the right thing? You can just try but you lose what makes you an individual person as you need to become this other person, the warrior, to fight for your children.

I reflect constantly on whether all of it was helpful to my children. What did I achieve but ongoing chaos most of the time.  They just learned they weren’t good enough. No wonder they hated going to school, hated me at times too, I’m sure. And if you had no friends or allies there, it must have been like being sent to war. It has affected my boys’ mental health badly, it’s worn them down, and one of them is so withdrawn and bitter about the world in general.  The battle now has shifted to a different battlefield, but I need to learn how to learn new battle skills to survive.   The boys are too vulnerable to be able to live on their own and it’s worrying as I don’t really see what the future lies for them They’re not quite as isolated as they once were because they’ve managed to find places where they can go. Even if only once a week to feel part of something other than being at home with me. It sounds like a small thing to go and meet a few friends for an hour but it’s not, it’s been so profound seeing them benefit from what little opportunities are on offer, as well as what they can actually cope with. They haven’t had the opportunity to socialise and make friends and it’s an alien concept that they struggle with. The mistrust, the unfamiliar environment, the stomach-churning fear and strange feelings that they’ve never experienced.  They need help to name and to nurture the new landscapes they encounter both physical and emotional to be able to learn and build skills that are taken so much for granted by the rest of us, in order to enjoy such simple but essential elements of belonging and feeling human.  Imagine being 16 and never once in your life having friends or going out on your own, that might get you thinking.

Most of my relationships have suffered because my extended family have lives that are different from mine and over the years, we’ve grown apart and disconnected. I’m the one that people feel sorry for, I’m the woman that looks about 100 years old and can’t go anywhere as I am at home looking after my boys.  My work colleagues pity me, they don’t get my life and how it needs to be the way it is. I am as isolated and fearful as my boys who are about to become men. But men who are not men, they are vulnerable young boys still, not able to navigate an adult world. Who looks after then when I’m gone if something happens to me? Their dad has moved on and has another family. Younger children who don’t experience the challenges my children have. My boys have gotten older, the invites to stay at weekends dried up a year or so ago. Time is a healer and I think as much as their dad loves them, he has found a way of coping, but elsewhere, steeped in another, new family. My boys don’t talk about it, they can’t, but they feel it. How much grief can hearts take before they descend into silent places where nobody hears their cries?  I’m not feeling sorry for myself as I would do it all again. I’m a mother. I understand what it’s like though and sharing these experiences with others who find themselves travelling to a similar destination has given me an opportunity to talk and share through this network, which has helped me. 

I’m not too sure what advice I can give for people who support children who are significantly disabled really but you get through and it does make you stronger. Despite the constant problems, we are an incredibly robust family unit. And I worry as I need to maintain that. For them. What else do they have?  The pressure to provide and be well and maintain everything grinds you down, but you can’t wear any of it on your face, you need to be the calm and smiling mum otherwise my boys get worried and upset. It’s my bedtime pastime to feel sorry for myself. It’s just so hurtful too, that families like mine seem to be forgotten. My boys, they’ve had multiple diagnoses over the years, different difficulties come up or practice moves on which change the professionals’ labels and to some degree it doesn’t matter, they are who they are, all they need is help to participate and find things that they enjoy doing and make them happy. They need to be valued as individual people with the right to their own feelings and emotions as neurodivergent people, and not have to fit into a mould that was never designed for them. If we value diversity, society must address its own values and see people’s neurodiversity as a spectrum rather than dictating how ‘we’ include ‘them’. Do they have the same right to include ‘us’? I don’t think so. 

School has been the main battlefield over so many years.  Particularly that they (the boys) don’t recognise and will never recognise the need for a formal education in the way that it’s structured. School isn’t a place for many who struggle to fit in. How many people do you know that actually enjoyed school?! Not a lot I bet. Turn on the tv and someone will be telling us about their lived experience or trauma. And that’s the non-divergent among us. Given the adverse effect it has, wearing children down, there must be an alternative and better solution. We don’t live in Victorian Britain anymore. Schools and education that are built on old institutions and old thinking should be a thing of the past. Like the NHS. Otherwise, the world can never be a good place for children like my boys. Mainstream isn’t for all. Support classes are generally holding spaces for children that schools don’t know how to help, and children simply don’t learn or thrive in them, despite their attempts to tell us otherwise. Go and visit one, they haven’t changed much in all the years my sons were at school. They’ve gotten worse, with more children in distress and causing havoc with challenging behaviour a common theme. Little wonder I’d say.  Spaces that cause distress, isolation and amplify difference. Youngsters are traumatised by their experiences which last for a lifetime, my boys are living examples, and I’m a parent who has suffered through the trauma of a lifetime of trying to fit my beautiful and gifted square family into a round hole. 

I could write a book about it all if I had time.  Even with all the supposed support it just didn’t ever seem to work, and nobody really listened to us. It’s sad to reflect on it.  I was left to fight and generally was perceived as a problem mum rather than a mum trying to find different and kind ways of doing things.  I think that is part of the problem, people don’t appreciate how challenging it is to have special children with a whole array of needs and those needs on top of their inability to express themselves. So many people need to be involved and to be honest, you and your family get lost in a game you’ve got no chance of winning; almost extra, redundant players, outsiders on the bench, rather than being at the heart of things. I hope that sharing my story might help other families to find better ways of getting what they need.   

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