This is the third article in a series written by Gary Staerck the father of three daughters all of whom have Additional Support Needs (ASN).
“We are not waving, but drowning.”
It all starts with what questions we are asked, more importantly it’s the questions we are not asked which make things difficult for us.
As the journey becomes harder, we find it harder to socialise and so you start to drift away from your friends. Noone ever asks, what can we do to make it possible for you to come out? Noone does because it’s not the normal thing to do.
If you don’t have a child with a neurodiversity or indeed any type of additional support need (ASN) then you have no reason to adjust your methods because the standard methods work. However, for parents with an additional needs child nothing is never “the norm”.
Let’s start with a standard visit to a friend’s house for drinks or dinner. At first all is ok, and the kids play but you are on edge waiting for the moment that they meltdown, explode or hit out. Perhaps they don’t play and sit with a device, you can’t berate them as this whole situation is out of their comfort zone and they need to regulate but you feel constant guilt because they won’t play with the other kids. They don’t like the food, they want to go home, they come to you every few minutes and you can’t hold a conversation. You try to eat your food, you need to comfort them, you don’t eat, it looks like you didn’t like it. You go home hungry, exhausted and embarrassed.
Leave the kids at home, I hear you say. We don’t have family nearby and can’t get a standard babysitter as the three girls can be hard going and need someone with experience.
We can’t afford to go out and pay for a specialist service, so we need to wait for the odd occasion that a grandparent visits or even rarer when they go somewhere to stay with family. So, you see going out together is a rarity. If we do get out, you still can’t switch off and often there is a phone call to say somethings happened and you need to go home. Sometime you don’t even make it out the door before the incident has happened.
I’d get fed up with me if I was my friend, having to cancel or cut short plans. Is it any wonder we don’t get asked out much anymore?
You end up drifting apart from friends you have had for years because of it.
What about getting out for a coffee during the school day? You used to do this with pals and neighbours. Even just popping over for a coffee and a blether. Honestly as your life became busier, people stop asking. There are appointments, meetings, webinars or you end up with a child off school. Already this year I can count on the fingers on one hand how many days there have been with all children in school.
“It can’t be that busy, you don’t even work anymore”, well let me tell you this, my life is busier now than it’s ever been.
I care and advocate for my three children who are all neurodiverse, with a mixture of dyslexia, anxiety and ADHD (Attention deficit hyperactivity disorder) I also care for my wife who has Functional Neurological Disorder as well as Autism.
For them, I attend medical appointments, school meetings, council meetings, write letters, apply for support, take them to clubs, counselling, support groups and more. For me, it’s more council meetings, board meetings and volunteering for REPAIR – The REPAIR (Edinburgh) Network is a group I cofounded in 2024 to help improve the relationship between parents, carers and Edinburgh council education directorate. It is also a network of parents and carers of children with ASN, a safe space to chat, get advice or just vent.
Doing the work with REPAIR, helps with the loneliness and has given me a new passion. Helping to improve the lives of disabled children and their families is incredibly difficult but incredibly rewarding all the same. However, it’s not much of a social activity. That is still missing from life. Something we all need.
You might think that’s enough for us to contend with, but as if to make us more isolated we have to contend with public opinion. Take two recent stories in the press for example. Two stories led by teaching unions weaponizing our children against the reading in parliament of the Restraint and Seclusion in Schools Bill.
Firstly, the articles talk about children in our special schools and children with ASN in mainstream schools hitting, biting and kicking at teachers and staff. Our children are not animals but this certainly paints that picture. There is little mention of the fact that the children’s needs are not being met nor the fact all behaviour is communication, no mention of the lack of teaching assistance, training and support in the schools that have led to this catastrophic failure leading to staff and children being hurt physically and emotionally. If a neurodiverse child is having a meltdown, you can’t reason with them as these stories suggest you should.
They are in a state of flight or fight and need regulation and calm not restraint and shouting at. This is where knowledge and training would make all the difference.
The second article blames children with ASN for 300 teaching assistance leaving post last year. A very sweeping statement. If you read to the end of the article, you will find that “other” reasons include poor pay, lack of training, no progression pathways etc but that is only if you make it all the way past the adverts and to the end of the article. Otherwise, you are left with the clickbait headline, a very surly looking union rep and a selection of pictures of bruised body parts. It’s enough to make anyone believe that our children are monsters.
That is not fair. Our children are far from monsters. They are sweet and loving children that don’t necessarily understand the world around them as much as everybody else. But with 47 percent of Edinburgh’s school population now recorded as having an additional support need, is it not time that we made more allowances, trained teaching and support staff better, provided more resources and support to schools and pupils alike and realise that the Seclusion and Restraint in Schools (Scotland) bill (put forward by Daniel Johnson MSP and passed stage 1 in the Scottish parliament last month) will protect not only the pupils but the teachers and support staff too?
So how can we compete with media like this isolating us even more? In short, we can’t, we just have to do the best with what we have. Keep calm and carry on, they say, easier said than done.
Gary is a founding member of the REPAIR (Edinburgh) Network www.linktr.ee/repair.edinburgh and is also on the Board of Tailor Ed Foundation. Formerly a theatre and events professional and now a full-time carer for his family and an ASN advocate. Gary has also written two books of poetry and short works inspired by his life journey. His books Back to our Future and It’s not really about a shirt are available on Amazon.
Sign up here for the online Town Hall meeting organised by REPAIR on 26 February at 7pm.
