...and stress is a main cause for chronic disease and many parents of children with ASD suffer with Fibromyalgia, MS, Chronic fatigue Syndrome (CFS) and Cancer to mention a few! I suffer with Fibromyalgia, Chronic Fatigue Syndrome and recently in the last 18 months have had two malignant melanomas (skin cancer) treated by surgery.
During my research, I found that Parents get offered almost no support for their well-being and mental health during the assessment for and following their child's diagnosis of autism. No standard counseling or coaching is offered to help parents understand their feelings, bereavement and confusion. This can lead to a vicious cycle and downward spiral for these families because the stress the parents endure negatively affects their child's progress and prognosis and their child's progress negatively affects the parent's stress!...
Parents are left to get on with it, searching for interventions, treatments and therapies and General Practitioners (GPs) are either ignorant of what can be helpful and make a difference, if infact they know anything at all about autism, and/or reluctant to suggest anything due to their lack of training or research and scientific evidence! So I was very pleased to hear in the news this week that the NHS are creating autism training for GPs and other members of the NHS! Although from past experience of delivering autism awareness training with my daughter's past Paediatrician,
some GPs are reluctant to even understand why they need yo know about autism. One GP asking, 'Why do we need to know about this?' Answer - '...because if you can recognise the early signs and symptoms of autism, you will contribute to that child's chance if receiving early intervention and be supporting a very concerned and anxious parent, making a positive difference to the whole family.'
For a parent though, this is just the beginning! Next comes, trying to understand your child's communicating behaviours, learning how else to communicate with your child whilst teaching your child what you can as well as trying to get some rest when and if they sleep or when they are at school because you've been up all night with them as they hardly sleep, if they sleep at all! Keeping a constant eye on your child whilst trying to get other things done and feeling exhausted at the same time; looking after your partner, wife or husband and the rest of the family whilst trying to explain what you are learning about your child to them so they can understand too; trying to continue working whilst your employer is getting increasingly impatient with your sudden requests to leave work and the need to be flexible either because of your own needs or those of your child, who has just had a 'meltdown' at school and you've just received a phone call to go immediately and collect your child because the school staff cannot cope; dealing with judgmental remarks from strangers and family and friends who do not understand autistic behaviours; feeling physically and mentally exhausted, weak, inadequate, bereaved, depressed and wanting to withdraw into yourself as well because there at least you might find some peacefulness or wanting to curl up and sleep all day, bury yoir head and discover it's all a dream, or should I say nightmare!
Most parents of children with autism want the same as other parents want for their children; for them to be happy, be the best they can be and fulfill their full potential to live as independently as possible and not be dependent on anyone, including their siblings, because we won't always be here!
When the 'system' looks after parents and carers needs better, enables and empowers them to be the best they can be to help their children be the best they can be IMAGINE WHAT DIFFERENCE THAT WILL MAKE!
The Carer's Act 2014 will be the foundation from where this can be built!....
Dr Mate's book and youtube video clips, 'When the body says NO!' explains how stress causes disease which explains why so many parents with autism have chronic and fatal diseases such as Fibromyalgia, MS, Chronic fatigue syndrome, cancer and others...
The mind and body are one! One affects the other! Dr Mate's lecture also gives us a clue about how the gastrointestinal issues found in many children with autism affect cognitive and intellectual functioning...and how non-verbal children and adults understand what is being said through their instinctive brain in their gut as they don't understand language (remember just because they cannot speak, it does not mean they cannot understand language!)...and how our emotional brain in our heart also plays a role in communicating what we need to communicate and how we need to behave to stay healthy ... and how our immune system also plays a communicating role experiencing stress and reacting negatively when we are not congruent with our feelings, or authentic as Dr Mate calls it, threatening our health ....and he explains how our immune system (our floating brain), our intellectual (cognitive) brain, gut brain and heart brain are all interconnected and work in unity with each other and one influences all the others...
Dr Doidge's book and youtube clips 'The brain that changes itself' explains the plasticity of the cognitive brain and how it can regenerate new neuron's at any age with persistent exercise; by believing in something strongly enough; using your imagination as if you are physically performing an action and by changing your thinking by using brain exercises, psychotherapy, talking therapies and how all these can change the structure of your brain and increase physical and mental ability. This may not be something new to your ears but I find that I often like to watch and hear these things as revision to remind myself about them...
In the above interview he explains how a piece of technology changed a woman's structure of her brain and she regained her ability to balance; how the tongue has sensory stimuli which when triggered by technology can help a blind person to see and many more amazing true stories! In his book as well as others and on the internet you can find many examples showing the Power of the Mind and amazing healing. This is important because it gives parents and families hope and inspiration that interventions can make a difference at any age for many diseases, conditions and disabilities of many different severities...
Additionally, there are many adults with autism who can explain how they experience their reality of the world and are giving parents hope and inspiration and scientists the knowledge for researching to help us parents understand how we can help ourselves help our children cope with their sensory challenges and interpret their communicating behaviours and the many interventions, therapies and technological aids for children and adults to use to enrich, enable and empower their lives...
People such as Carly Fleischmann, Temple Grandin, Donna Williams, and many others you can google and search on youtube...You will see, hear, read and learn a lot about how you can help your loved one by watching these links above.
I also believe Neuro-Linguistic Programming (NLP) is a model for Education and Life Coaching that can make the difference that makes the difference for many children, adults, families, relatives and other loved ones living with autism and I practice it as best I can in my personal life every day and with my daughter, Farrah who was diagnosed with autism at age 2 years old in 1998. Other members of my family are finding it is helping them to live the life they want as well...Using NLP you can change your unresourceful thinking and behaviours to more resourceful ones using your 3 minds and body. I believe the potential is great for improving our lives to be happier and more fulfilling without the so much stress and anxiety...(there is always a usefulness for some stress and anxiety! eg. when you see something dangerous is about to happen!).
There is a huge need for support in the form of interventions, therapies, treatments and advice for parents, carers, children and adults living with autism AND LOTS THAT CAN HELP WHEN YOU KNOW ABOUT IT, WHERE TO FIND IT, WHO TO ASK & CONNECT WITH TO GET IT!
I just wish parents would get referred to a Coach, Mentor or Counselor and that more will be offered and available at that crucial time when parents are awaiting a diagnosis and following the confirmation of one, to help them process their anxiety, stress and grief whilst juggling everything else for themselves and their family; to enable and empower them; keep them healthier so they can enjoy life more; enable them to function better in all their many other roles and get some typical life back; instead of exhausting themselves with worry and having to fight the 'system' for all theses basics...
Whilst I have been writing this blog, Paul Whiteley PhD. brought to my attention this research which is exploring the effectiveness of a cognitive and behavioural intervention for parents at the critical time immediately following diagnosis...Great!...it's a start!...
So, here's to a more successful and happier 2015 and subsequent years where families and individuals with autism get more help to support their needs to become the best they can be and fulfill their full potential ...
Most parents of children with autism want the same as other parents want for their children; for them to be happy, be the best they can be and fulfill their full potential to live as independently as possible and not be dependent on anyone, including their siblings, because we won't always be here!
When the 'system' looks after parents and carers needs better, enables and empowers them to be the best they can be to help their children be the best they can be IMAGINE WHAT DIFFERENCE THAT WILL MAKE!
The Carer's Act 2014 will be the foundation from where this can be built!....
Dr Mate's book and youtube video clips, 'When the body says NO!' explains how stress causes disease which explains why so many parents with autism have chronic and fatal diseases such as Fibromyalgia, MS, Chronic fatigue syndrome, cancer and others...
The mind and body are one! One affects the other! Dr Mate's lecture also gives us a clue about how the gastrointestinal issues found in many children with autism affect cognitive and intellectual functioning...and how non-verbal children and adults understand what is being said through their instinctive brain in their gut as they don't understand language (remember just because they cannot speak, it does not mean they cannot understand language!)...and how our emotional brain in our heart also plays a role in communicating what we need to communicate and how we need to behave to stay healthy ... and how our immune system also plays a communicating role experiencing stress and reacting negatively when we are not congruent with our feelings, or authentic as Dr Mate calls it, threatening our health ....and he explains how our immune system (our floating brain), our intellectual (cognitive) brain, gut brain and heart brain are all interconnected and work in unity with each other and one influences all the others...
Dr Doidge's book and youtube clips 'The brain that changes itself' explains the plasticity of the cognitive brain and how it can regenerate new neuron's at any age with persistent exercise; by believing in something strongly enough; using your imagination as if you are physically performing an action and by changing your thinking by using brain exercises, psychotherapy, talking therapies and how all these can change the structure of your brain and increase physical and mental ability. This may not be something new to your ears but I find that I often like to watch and hear these things as revision to remind myself about them...
In the above interview he explains how a piece of technology changed a woman's structure of her brain and she regained her ability to balance; how the tongue has sensory stimuli which when triggered by technology can help a blind person to see and many more amazing true stories! In his book as well as others and on the internet you can find many examples showing the Power of the Mind and amazing healing. This is important because it gives parents and families hope and inspiration that interventions can make a difference at any age for many diseases, conditions and disabilities of many different severities...
Additionally, there are many adults with autism who can explain how they experience their reality of the world and are giving parents hope and inspiration and scientists the knowledge for researching to help us parents understand how we can help ourselves help our children cope with their sensory challenges and interpret their communicating behaviours and the many interventions, therapies and technological aids for children and adults to use to enrich, enable and empower their lives...
People such as Carly Fleischmann, Temple Grandin, Donna Williams, and many others you can google and search on youtube...You will see, hear, read and learn a lot about how you can help your loved one by watching these links above.
I also believe Neuro-Linguistic Programming (NLP) is a model for Education and Life Coaching that can make the difference that makes the difference for many children, adults, families, relatives and other loved ones living with autism and I practice it as best I can in my personal life every day and with my daughter, Farrah who was diagnosed with autism at age 2 years old in 1998. Other members of my family are finding it is helping them to live the life they want as well...Using NLP you can change your unresourceful thinking and behaviours to more resourceful ones using your 3 minds and body. I believe the potential is great for improving our lives to be happier and more fulfilling without the so much stress and anxiety...(there is always a usefulness for some stress and anxiety! eg. when you see something dangerous is about to happen!).
There is a huge need for support in the form of interventions, therapies, treatments and advice for parents, carers, children and adults living with autism AND LOTS THAT CAN HELP WHEN YOU KNOW ABOUT IT, WHERE TO FIND IT, WHO TO ASK & CONNECT WITH TO GET IT!
I just wish parents would get referred to a Coach, Mentor or Counselor and that more will be offered and available at that crucial time when parents are awaiting a diagnosis and following the confirmation of one, to help them process their anxiety, stress and grief whilst juggling everything else for themselves and their family; to enable and empower them; keep them healthier so they can enjoy life more; enable them to function better in all their many other roles and get some typical life back; instead of exhausting themselves with worry and having to fight the 'system' for all theses basics...
So, here's to a more successful and happier 2015 and subsequent years where families and individuals with autism get more help to support their needs to become the best they can be and fulfill their full potential ...
