My guests this week on my regular live radio programme ‘All things Autism’ were Linda Nortcliffe a grandparent to a young man on the autism spectrum and Kevin Bugler who has given up his career to support his wife with caring for his 2 younger boys.
Kevin formed a Dads support group initially which became ‘Hillingdon DADS’ a non profit organisation.
Both Linda and Kevin volunteer at regular events with this group.
After complications at the birth of Linda’s grandson, her colleagues were curious to know how things were progressing with her grandsons milestones. Linda kept them up to date periodically with snapshots of his development. When it became obvious that her grandson was different to her other grand children she began to question the Doctors Linda was working with to see if they could shed any light on his differences. All of them suggested that her daughter should refer her son to the Health visitor and GP.
Whilst Linda spoke to her colleagues it became obvious that they had little knowledge of child development and in particular Autism Spectrum Disorder (ASD). This didn’t surprise Linda as her nursing colleagues also had little knowledge of ASD. I decided to do a survey amongst my colleagues to ascertain their knowledge on ASD, so I asked some pertinent questions relating to common myths about ASD.
The usual responses were:
- Rain man
- Mental incapacity
I was alarmed. My own knowledge was also very sketchy, but I had nursed some children with special needs, so I understood that neurological elements of the condition were often present. A professor I was working with, when I brought up the subject of ASD suggested that ASD was the new benefit go to and that bad parenting was responsible. I was furious with his response and suggested to him that he himself probably had traits. i.e. rigid thinking, limited interests, the need for repetition and routine, and his obsessions. He considered my suggestions and later came back to me and agreed with me.
He also shared with me that he had a difficult patient who presented with the traits mentioned above. This patient just couldn’t accept his diagnosis and became obsessive about his condition. I pointed out to the professor that the patient could have high functioning autism and that’s why he was finding it difficult to come to terms with his treatment. The professor was grateful for my input as now things made sense. He also decided to give a series of talks to his colleagues in the hope that they would become more aware of Autism and Special needs patients.
In order to help enlighten my colleagues I took my grandson to work. The response was standard. ….. He doesn’t look Autistic! Are you sure the doctors got it right! Does he go to mainstream school? Is he violent?
In order to enlighten my colleagues I set up a few information sessions with them about ASD and in particular, the way it affects my grandson. Whilst I was in close proximity with the surgeons I was working with, I engaged them in discussions about Special needs provision and its effects on my grandson.
The school has a special ASD resource centre with a number of learning assistants. All with varying experience of Autism. Often this causes conflict with my grandson as they perceive his behaviour as “naughty”. Rather than look for the triggers for his behaviour they treat the behaviour as bad behaviour and impose meaningless sanctions. They fail to understand that Behaviour
Kevin Bugler shared:
‘I am 45 years young, Married to Ivana and father of 3 boys all on the spectrum although each are as individual in their personalities as they are their SEN.
After giving up my career to support my wife with caring for my 2 younger boys, I formed a Dads group initially which became Hillingdon DADs – Non Profit Organisation. It fast became clear that some of the dads in our group wanted to do a little more to help all families with children with disabilities and special educational needs, so we decided to run events for children with any disabilities and special educational needs, their siblings and their carers. All events designed for children to have fun and relax while their carers will meet other carers and get info on what support and services are available for them and their families.
We are now in the Charity application Process where Hillingdon DADS is the Charity and within the Charity we currently have 2 groups 1 being the original format of a dads group called HD DADZ4DADZ so called as it offers support from DADZ4DADZ caring for children with disabilities and special educational needs, the other group is called the HD Carers Support Group, which runs all the events for children with disabilities, their siblings and their carers. Events such as the forthcoming SEN Summer Funday and our very successful HD Santa’s Grotto and Christmas Market.
Once we achieve our goal of becoming a fully-fledged Charity we will continue to look for gaps in the support for families caring for children with disabilities and fill the gaps with affordable support required to fill the gaps.
HD Support Group run a regular SEN Saturday Drop in Centre which is held every second Saturday of the month. All carers of children with disabilities are welcome to join in events run by the Carers Support Group.
Social Media links
HD Carers Support Group – join us for Summer Fun Day being held on 22nd June, between 11am and 3pm at Pentland Field School, 8 Pentland Way, Ickenham, Uxbridge UB10 8TS This is a Fun Day Open To All Children & Adults With A Disability Or Special Needs, their family, friends and carers !
ENTRANCE ONLY £5 PER CHILD OVER AGE 3 – click here for details and book your tickets!