Here is an interesting article from WalesOnline.co.uk
Are toddler tantrums pushing you to the edge? Learning from parents of children with autism could help steer you through those meltdown moments
What is it about supermarkets? Is your weekly shop more meltdown than melt-in-the-mouth?
Surviving tantrums is a parenting rite of passage.
But for parents of children with autism, that passage can be a long one. For some, the supermarket will always be a no-go zone.
Learning to avert or cope with meltdowns is what parents of children with autism excel at.
And a conference in Cardiff tomorrow will explore how these parents can remain effective even in the most testing circumstances.
The lessons they learn could benefit all parents.
The keynote speaker at tomorrow’s conference is John Clements, an internationally-renowned clinical psychologist who has specialised for nearly 40 years in the field of developmental disabilities, specialising in autism.
A major career focus has been finding practical support for people who present with significant behavioural challenges.
The event has been organised by the local branch of the National Autistic Society (NAS), a parent-led volunteer group, and is being hosted at Cardiff University by the Wales Autism Research Centre (WARC), the first national research centre within the UK.
The NAS branch regularly meets up to exchange information, advice and support in a sociable and friendly atmosphere.
For mums like Marie Macey, whose 19-year-old son David has autism, the group is a lifeline.
“It is devastating to find your child has serious special needs, and it really helps to be in a group with other parents, supporting one another,” says Marie, from Cyncoed, Cardiff.
“Initially I was very involved with Thrive, but for the last six years also involved with the NAS branch. It’s so good to see these two great support groups working so well together because they do offer something different to parents.
“I welcome the friendship, the talks, the coffee mornings, the good quality information and of course evening meetings in pubs.
“My son has just gone to special needs college, which is a massive change in my life, but I can chat to other parents in the branch about the process of college applications, just as other parents exchange experiences of statementing, Disability Living Allowance applications and things like that. There’s always someone who knows how to get good help – and there is the website for information as well.
“It changes your whole life, having a disabled child from what you expected it to be.
“It’s so good to be with other people who are going through the same, we all help one another. Joining the branch is something I’d really recommend for anyone who’s worried their child could have autism, and for parents of adults who haven’t joined before.”
Dad Joe Boyle, from Penylan, Cardiff, whose eight-year-old son was diagnosed with autism five years ago, believes that early diagnosis and support from others can be a major help.
And many of the parenting strategies he learnt at the start have also been useful to use for his daughter, who doesn’t have autism.
“The fundamental difficulties faced by children with autism are those confronted by all toddlers,” says Joe.
“My son’s autism was actually picked up by a nursery worker. I suppose looking back on it he was walking around in circles and lining cars up, but at the time we had no concept it was a problem.
“He was our first child so we didn’t have anything to compare him to. But looking back the signs were there. Like the time when we went to the supermarket and he had a massive unstoppable tantrum at the checkout because two of the bananas in the bunch had broken off. Once the health visitors got involved and we had the diagnosis things moved very quickly.”
His son has high functioning autism and is able to attend a mainstream school, but Joe admits that the first six months after diagnosis were very difficult.
“I did the thing they tell you not to do and looked on the internet,” says Joe.
“I totally scared myself and for the first six to eight months there was a lot of gloom and I had images of him sitting in the corner becoming very distressed. All those dreams and aspirations I had for my child had gone.
“You tend to gravitate to the worst case scenario. But we got involved in NAS Early Bird scheme that helps parents of children with autism put strategies into place. It was very practical and bit by bit it helped us pick up from the worst case. It helped us become the actor rather than the one being acted on and helped us to get more control of the situation.
“It is not a cure for autism by any stretch of the imagination, but it is something that helps smooth the situation and many of the strategies could be used by all parents. In fact, we have used a lot of them for our daughter too.
“Autism is a lifelong condition and we are now a lot more positive about what our son can achieve. The help we received from support networks and other families have been so much help. We don’t expect any less for him and the glumness that we first experienced has vanished.”
HOW TO COPE
There is a National Autistic Society programme that helps parents whose children have been diagnosed with autism called Early Bird. Many of the strategies can be useful to all parents.
Become a detective. Parents of children with autism soon learn that behaviour is communication. So work out what your toddler is trying to tell you when their behaviour is inappropriate.
Use the STAR method to understand why tantrums take place and how you might prevent them happening in future: the Setting in which the tantrum takes place, the Trigger that caused the tantrum, the Actions of the child while having the tantrum and the Results of the tantrum, which influence how likely it is the behaviour will reoccur.
Use visual schedules. The autistic brain can become overwhelmed by information. Presenting information in a visual way can help guide them through the day. Line up photos and small pictures, easily available online or hand-drawn, to remove the uncertainty and stress in a young mind.
Reduce your language. When things are going wrong, it’s easy for the amount of language to increase, as you move from pleading to bribing to telling off. Step back for a moment, use as few words as possible, speak extra slowly and leave long gaps between your sentences.
Consider the environment. Sensory difficulties lie at the heart of autism. A toddler’s senses, too, are still developing. Their tantrum could be a basic response to sensory overload: are there distressing noises and smells nearby, are the lights too bright, is the temperature causing them discomfort?
Distinguish between “can’t” and “won’t”. Are you expecting too much of your child? And are you too quick to accuse them of deliberately misbehaving when in fact they can’t help it? A tantrum is an attempt to tell you something. Are you listening closely enough? Who’s the adult here?
The Cardiff & the Vale NAS Branch was set up by a group of six local parents nearly seven years ago.
The group has regular meet-ups, either daytime or evening, which provide the opportunity for parents, carers and professionals to meet up. They also campaign for improving local autism services for all age groups.
One of the founding parents, Lynda Morgan, whose son has autism, understands the need to have the support of other.
“We are not trained counsellors, but we are there to support other parents,” explains Lynda.
“Every child with autism is different and every case is different but it is great to have support.
“I once had the branch mobile and a mum phoned me who was really upset. She said I am on the phone to you and my 13-year-old son is under the table pulling my leg to try and get me off the phone. I told her that my son was doing the same. Having someone who understands what you are going through does help.”
The annual programme of events for the branch, including coffee mornings, social evenings and workshop is being launched at the conference tomorrow.