Since Nick and Vickie Bothwell’s son Jack, 9, was diagnosed with autism five years ago, they have had to fight constantly to get him the educational help he needs.
“What they don’t tell you when you child gets the diagnosis is you will have to learn to fight for your children. You will have to learn to dig your heels in and say 'I disagree with your assessment'," says Nick.
"If you have an educational psychologist, a special educational needs (SEN) coordinator, and two classroom teachers sat across the table from you discussing your child's education, it can be quite intimidating."
Mainstream classes have been a struggle for Jack. He had significant speech delay, and would sit in classes in a daze, not understanding, his dad says. Sometimes his frustration would come out in bad behaviour and he would come home unhappy and anxious.
"As a parent you don’t like to see your child suffering and coming home stressed. He would struggle to hold it together at school and then the anxiety and frustration emerged at home. The school would say 'we're not seeing that'.
"You would feel the other parents looking at you in the playground because you have the 'naughty' kid, and I felt like taking a placard up with me saying: 'He's not naughty, he's got autism - and he's stressed out of his box at the moment'."
When Jack was anxious about taking part in the school’s sports day because he finds competitive sports stressful and was embarrassed about his poor coordination, the Bothwells successfully persuaded the school to instead involve him by holding the finishing line and assisting the teachers who were running the event. As a result Jack felt relieved, happy and included. But this is not always the case.
“Jack is P5 and still struggles to write. But he is often not allowed to use a computer or a tablet because the school says it is not appropriate as he needs to learn to write. They had a parents' evening last week and they had his classmates' writing up on the walls. And Jack’s wasn’t there.”
They know that better access to supportive technology and communication aids, as well as adequate levels of support teaching staff, would enable Jack to express his knowledge and learning and build his confidence, which would also better equip him to integrate with his classmates and form more meaningful, equal-footed friendships with his peers. However, a lack of funding and understanding still acts as a barrier.
“My son isn’t really integrated in school. He copes with school. They help him to an extent but they don’t help him to thrive,” Nick says.
They feel fortunate they are able to manage these scenarios but believe greater support is needed to equip and empower parents to stand up for their children’s needs.
“It is important to acknowledge that some parents of children with special needs actually have special needs themselves and need support. I come across lots of other parents and find myself sharing advice with them, even just to know how to go in and handle a meeting, to learn how to communicate in a constructive cooperative way, because it is emotive and it is emotional,” says Nick.
After fighting Jack's corner for several years, the family now feel he's on a reasonably even keel, with an arrangement that sees him in mainstream school part of the time and also attending a special unit where he gets extra communication in another school.
"It is not perfect, but it's not terrible. I want the school to be able to tell me he's thriving, not that he's just coping," says Nick.
The Bothwells welcome ENABLE Scotland’s campaign and its focus on highlighting positive solutions that will enable children like Jack to reach their full potential and thrive.
All the council education authorities are doing the same thing - there is less fudning and fewer assistants available and fewer specialist schools.
They say a child doesn't need support, but what they are really saying is 'we don't have the funds'."
“What you do now at school for these young people will set them up for the rest of their lives. This is something that will help these young people achieve their best and maybe even reduce their support needs in the future.”
"There is a risk that you end up trying to change the child to fit mainstream rather than adjusting mainstream to fit the child." He points out that this is the opposite of disability employment law, which demands employers make the necessary adaptations for disabled employees.
"On a good day mainstreaming is great, on a bad day it can be pretty damaging."
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