What about the Parents of Children with autism?

During my research for my MA dissertation, I discovered that parents of children with ASD experience more stress and mental health issues than parents of typically developing children and those with any other special health care needs or disability and have close to nil support for themselves.  (Osborne and Reed, 2009; Hastings et al., 2005; Dunn et al., 2001, cited incorrectly as 2004 in Dillenburger et al., 2010; Schieve et al., 2007)....

...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 ...

  

Make your 2015 New Year Resolution one you really want and can keep!...

As we move from 2014 and into 2015, what do you really want to be different in your life next year?
How much do you really want that difference? How can you be sure you really want it?

How often do we wish things could be different and believe that life is just the way it is and we cannot change it? How often do we make New Year Resolutions and after a short period of time find we have slipped in to our old behaviours and tell ourselves, that's just the way it is and carry on doing the same things we always did?

Well, guess what? It doesn't have to be this way! 

We can choose to think like this or we can choose to think differently and when we choose to think differently, we really can make the changes we want in our lives and achieve our dreams and much much more!...

There is always a choice, often from many options, they may be ones you think are not for you but what if they are? What would happen if these are possible choices you can choose?

Using Neuro-Linguistic Programming (NLP) as a model for making changes in my life has really made the difference for myself and my family, it has not necessarily made life easier; when we want change, it is something we must work at and that work starts with you changing your habits, your way of thinking, your state of mind, your communication and behaviours! You have to make that difference!

This last two years, whilst training to become an NLP Master Practitioner and Life Coach, specialising in Coaching Families living with Autism, I have explored changing my habits, my thinking, my communication and my behaviours in situations where I was repeatedly getting stuck in situations that were causing a downward spiral towards stress and misery for myself and my whole family. I have discovered how very different even the smallest changes in my responses to others can make to their communication and behaviour and how the final outcome can be very different from previous similar scenarios and times where the results have been in a one way unwanted direction!

 

The most important change I have made to myself has been to notice how the meanings I create of situations, others behaviours and communication affect my communication to myself and how this affects my behaviour towards myself and others and how much this affects the outcome of any reoccurring situation...

It can be so easy to assume that someone means something when they say or do something! We really do not know unless we ask them directly or if they are not able to verbally communicate or communicate in any way, ask ourselves,

'What else could that mean? ...and what else could that mean?....and what else?...and what else?

One very useful model in NLP is one which helps you to make well-informed decisions and create well-formed outcomes and has been researched and published in a peer-reviewed Education Journal and concludes,

compared to SMART goals and targets - 

'well-formed outcomes offer a more rigorous and holistic approach, by taking greater account of the learner's identity, affective dimensions (feelings and emotions), social relations and values, as well as encouraging mental rehearsal. (Day & Tosey, 2011)

It is this model, called the PACER model from NLP, integrated with another that I am using in this blog to offer you the opportunity to create your personal well-formed New Year Resolution for your desired outcome in 2015...

* How many New Year Resolutions have you achieved and kept going?
* Where will you be tonight when you are making your resolution/s for 2015?
* Where do you want to be on 31st December 2015 when you are making more Resolutions for the next year in your life? Where you are now or closer to your destiny?
  Here is how you can achieve what you want in 2015... 
* Find as many answers as you can to all the questions, whether you think they are relevant to your choice or not! 
* When you think you have found all the possible answers, you need to search for more - there is always more!....and these are the ones which will make the difference!
* You may want to get a pen and paper to write down ALL your answers? ... (They can be just one word answers).

First, state what it is you want in 2015 in positive terms. 

Make it specific and ensure you are not stating what it is you no longer want or don't want!

 

* How will it feel to have what you want?

* What will it look like?

 

* What will you be hearing when you have it?

* Have you already had a taste of it and want more of it?

* How will it smell? 

Where do you want this outcome? Who do you want it with? By when do you want to have it?

* What will you gain and lose by getting what you want? (Remember! There is always something to lose when there is something to gain!)

* How will your resolution affect others? What will they gain and lose by you achieving and sustaining your 2015 resolution?

* What do you need to be able to achieve your resolution?

* What do you need to sustain it?

*How can you get what you need to achieve and sustain it?

* How important is this resolution to you on a scale of 1-9?
* Why is it important to you?
* What difference will it make to who you are by achieving and sustaining this resolution? 

If you believe you can achieve this New Year Resolution now and you have or can find the resources you need and you can do what you need to do to achieve and sustain it t make the changes in your life where you want them...What are you waiting for?

GO FOR IT! ...Life is what YOU make it!

HAVE A FABULOUS 2015 EVERYONE! 

For a more personalised Coaching session which will include finding the resources you need to make the changes you want for 2015

or

Personal Life Coaching and Mentoring to Create the Life You Want to Live with autism, 

you can contact me through my website: www.copingwithautism.co.uk

 by phone: (England UK) 077711162122

or by email: info@copingwithautism.co.uk

If I were planning another baby I would...

I am not planning to have any more children but if I were or if I were asked how I would prepare myself based on my 18 years of research and autism intervention implementation and experience, this is what I would do or suggest...

...Firstly, I would have my Vitamins D, B6, B12 and Magnesium and my thyroid levels checked by my GP and make sure I was as healthy and fit as possible.

I would sing the ABC and number songs and other nursery rhymes whilst I was pregnant and once the baby was born I would continue singing these and maybe introduce picture cards with the alphabet and numbers on as well as use Makaton signing http://copingwithautism.co.uk/makaton.php to prepare the child to recognise the name of people and objects. Babies later diagnosed with autism have been shown to pay more attention to objects (such as a mobile over their cot rather than human faces in some research conducted at the Cambridge Autism Research Centre so, autism can be noticed much earlier if you do have reasons for concern.

I would be watching my baby's attention to my face and their likes and dislikes to sensory input (extreme responses to  noises, light and touch). As my baby developed, I would be looking for the signs and symptoms of autism and encourage turn taking, help the baby by using their hands to sign the Makaton signs for specific and frequently requested foods such as milk, juice, biscuit, (even 'toilet' when I change their nappy)...My intention would not be for the baby to independently sign or talk any earlier or be trying to make the child  'super clever,' just ensuring any risk or potential autism related problems could be improved by this extreme early intervention. The brain has so much plasticity at this early stage of development which means it can be influenced how to develop through this kind of support.

If I had concerns about my baby, I would speak to my health visitor and GP and if I felt they were not taking me seriously, (as can often happen and you can be considerd an over anxious mother) I would ask for a referral to the community Paediatrician and give them the links , sections and page numbers to the NICE ( National Institute of Clinical Excellence) Guidelines found on this page of my website along with much more... http://copingwithautism.co.uk/diagnosis.php and quote the Children's and Families' Act 2014 where Early Support is now embedded within legislation from Birth to age 25!

This may all sound extreme to those who have never had a child with autism but I believe, it would be the best possible intervention a mother could be proud of doing, knowing she is giving her child the best possible chance in developing to become independent and reach their full potential in life...what most of us want for ALL our children...ü

The power of our mirror neurons, silence, a calm state and environment...

...I recently responded differently to a child at the school where I work and got a completely different result... The routine of time out and the sandtimer appeared to have become another way to get attention and was not getting the desired result for the peace of the classroom and emotional state of the other children. I sat with the child in the room where he was having his time out but gave no response, eye contact or feedback what so ever to his verbalisations and behaviour....gradually, after 25 minutes or so, he calmed down and sat on the floor quietly, still asking me why I was not speaking to him...I still did not respond...I went in to the classroom where another assistant helped me carry a table and chair into the room, put his work on the table for him to continue and said nothing, sat back down , still no eye contact...no repsonse or reaction from me... He stood up, sat to the table and started to finish his work...he turned round and asked if I would help him with it...That's when I looked at him and said calmly...'yes, of course I will.'

For anyone who is not familiar with mirror neurons, they help us recognise other peoples states and behaviours and relate to their experiences when we have experienced that state or experience ourselves. Our states and behaviour affect others emotionally and behaviorally and so when we are responding to a behaviour which is not useful and not creating the desired outcome, we can change it  by behaving/responding in a different way ourselves. 

From a behavioral perspective, the child was in the presence of another person but getting no feedback what so ever, not even eye contact, body language or facial expression ( I was sat very still -zoned out). He therefore, calmed down. 

Children with autism can be hyper and hypo-sensitive in all their senses and therefore experience their state at a much higher or lower intensity than others and what works for one will not necessarily help another in a similar situation...one example being on a different occasion and with a different teacher and assistants, a girl aged about 9 with autism was screaming and behaving very aggressively at a support assistant and nothing the assistant was doing was helping so I 'broke the state' by screaming as loud as the girl (something I used to do with my own daughter in the midst of a tantrum). The girl immediately stopped and screamed again in my face, so I screamed back at her and she burst out laughing and it became a game until she completely calmed down and the class resumed!...ü

With my own daughter on the way to school with my son one morning back in 1998, she was age about 3 then, decided she wasn't going to walk and threw herself on the pavement, screaming and behaving like a dying fly...so I lay besides her on the pavement and did the same! Other parents asked if they could join in but didn't! ...My daughter stood up immediately and said the only word she could back then 'NO!' So I got up and she held my hand and we carried on our way!

At home she would throw herself under my feet to scream and tantrum so I would sometimes do the same as her or deliberately turn my head away from her and walk to another room...she would come and find me and throw herself under my feet again so I would walk away again...that was when I decided to try copying her behaviour to see what she would do...sure enough the mirror neurons kicked in as she watch me mirror her actions and sounds and she would stop...it was a strategy I learned 'to get into her world' at the time and I decided to try it out as a last desperate attempt when I was struggling with her challenging behaviour...

 


Sometimes doing the same thing over and over again creates the same result and we get in a rut wondering what to do next and when you have tried everything you are aware of, as a parent, it makes you exhausted and very stressed living in this state constantly leading to other health issues. Learning to control our emotional states and diss-associating from our child is one way we can help ourselves, our child and the rest of our family. Neuro-Linguistic Programing (NLP) is one very effective way of coping with ourselves to help us cope with autism.

Changing unwanted/undesirable/unhelpful behaviours starts with YOU changing your response...try it...next time try behaving differently or saying something with different words, in a different tone or say nothing at all, do nothing at all except watch for your child's safety...see what happens...

I am an INLPTA certified Practitioner in the Art & Science of NLP and offer this as one of my services to my clients...http://copingwithautism.co.uk/nlp.php

How do we know Early Intervention makes a difference?

There is no way of proving what specific interventions worked and what difference any have made after the event and it would be impossible to pinpoint one out 'to be the specific one that made the significant difference!' Everyone is different.

This is why a tailor made personalised and holistic approach is needed for each individual child or adult. I can only know what interventions and therapies I used with my daighter and my reasons for trying them at the time and then consider how later research findings relate to what I did and how my daughter progressed. 

One problem for researching interventions in my opinion is that no one intervention is being used with a child at one particular time. Often a child is receiving a number of educational and therapeutic interventions to improve communication and behaviour. 

 

I implemented many, many interventions with my daughter very early in my daughter's life, with support where I needed it, as I am lucky enough to have a GP who practices complimentary holistic medicine as well as conventional medicines and I have a family member in the medical profession to support me too.

My daughter's development was severely impaired at age two and would tick all the boxes for 'classic autism,' - hand flapping, non-verbal, hyper and hypo-sensitive with all her senses. My hubby and I started with doing the Hanen program (The National Autistic Society (NAS) Early Bird program was later based on the Hanen). My daughter had Sensory Integration Therapy (SIT), Speech and language therapy and Makaton was her first way of communicating with us, Music therapy, Portage, specialist nursery, support at our local pre-school, horse riding, vitamin therapy and other supplements and enzymes, Eurythmy therapy and others; went to a specialist autism unit after mainstream couldn't cope with her at age 7 and she never attended mainstream full time; attended a specialist secondary school unit where they used PECS, TEACCH and other SEN support and other interventions as she grew older and became appropriate. I am currently using NLP with her to help her manage her emotional states and her current challenges related to autism....so you see how intervention evolves with the individual, depending on what they need as they progress. 

Back in the 1990s there was no support or suggestion as to what to do but I am fairly positive that if I had not intervened as early as I did, my daughter would not have attended mainstream college and passed 2 A levels, been in Team GB trampoline disability squad or a dancer of Free Style disco and Street dance.

Additionally, much research states the evidence for the effectiveness of early intervention due to the plasticity and early development of the brain at this time and the research I did for my MA Autism had to be from scientific peer reviewed journals to be considered credible. I researched my ideas/theories based on my work with my daughter, my understanding of autism from many autistic adults. 

The first autistic adult I heard speak about her experiences of being autistic in the 1990s, was Donna Williams and having read her book Nobody Nowhere, I remember thinking, if Donna can stand on that stage in this hotel with dazzling chandeliers and be able enough to describe what it is like to have autism, having had no help from her mother, there is hope for my daughter!...I am still in touch with Donna after all these years as she was my hope for my daughter at the very beginning. I have since met Temple Grandin and spoken to her about her mother and childhood and seen her film which resonates so much with me. Temple's mothers ignored advice to institutionalise her daughter and taught her with flash cards to speak and read and from my conversation with Temple, her mothers principles on behaviour and 'discipline' were very similar to mine and this is shown in the film. Her mother faced the same challenges back then as I and other parents did in the 1990s and sadly as parents still are facing now with the education system and many peoples' understanding of autism!

ALL children develop naturally to different levels of functioning and ability and autism is described in the literature as a neuro-developmental disorder but as with ALL children it is how we nurture them, play, stimulate and encourage them that makes the difference. If you leave a seed in a dry soil it will not grow and flourish to its full potential! You need to water, feed and nurture it and it is the same with human beings too...ü

Welcome to my BLOG page. Allow me to introduce myself...ü

My name is Caroline Seyedi and I am an Autism Intervention, Communication Behaviour Specialist & a Master Practitioner in Neuro-Linguistic Programming (NLP).

I am particularly passionate about EARLY SUPPORT AND INTERVENTION. However, I am also very passionate that parents should know that it is NEVER too late to start intervention and support for Personal Development and Life Skills!

I have a daughter who was diagnosed with Autistic Spectrum Disorder (ASD) at the age of two. She is now 19 years old and has amazed professionals and us, her family, with her progress because her prognosis looked very grim in 1997.

I have always supported and helped other parents with their children who have or are awaiting an ASD diagnosis and in 2009 decided to formalise my knowledge and experience by enrolling at the University of South Wales, to do a Masters research degree in Autism.

I have an MA Autism and I am INLPTA accredited as a Neuro-Linguistic Programming (NLP) Master Practitioner which supports my passion and my goal of empowering, enabling and supporting individuals and families living with autism; by helping them explore their desired outcomes; discover the resources they already have to achieve them; explore aspects of their lives they may wish to change; control their emotional states to help them fulfill their aspirations, reach their full potential and be the very best they can possibly be.

I have personally experienced the powerful impact of NLP in my own life and seen very positive transformations using NLP with my daugher; helping her see her options; explore the possibilities available to her; make her own informed decisions and find solutions to anxiety; resulting in positive changes and outcomes in her life.

I am a member of the following organisations:

• ACAMH (Association for Child & Adolescent Mental Health)
• Bristol Association for Neighbourhood Daycare (BAND)
• Mentor of the Institute of Enterprise and Entrepreneurs 
• State Registered Senior Hairdresser with the Hairdressing Council UK
• NHS Foundation Trust (North Bristol)

I have a CRB (Criminal Records Bureau) check certificate (now called a DBS certificate).

Now my daughter is a happy, sociable, loving adult who loves and competes in freestyle disco and street dance and British Gymnastics Trampolining.
She has been a member of the British Gymnastics Trampoline disability squad for Team GB in 2011, 2012, 2013, 2014 and has won a Bronze, Silver and Gold Medals at the National British Championships throughout these years... Something I could never have even dreamed she would do when she was little, non-verbal and displaying all the signs of classic autism and in a world of her own!

I know there is so much that can be done to make a difference to children and adults with autism spectrum disorder, especially when implemented early and my passion is to help individuals and families living with ASD reach their personal aspirations and full potential; whatever that may be for them; creating happier and more fulfilled lives.

ALL children are different and have different abilities, interests and potential and that is the same for children living with ASD. They are children first and the ASD 'label' is only there to enable professionals and parents/carers have a guideline of how to help develop their learning further in a way they understand. However, the diagnosis is very helpful to access the Local Authority services and support they need.

'Once you have seen one child with autism, you have seen one child with autism.' ^1.

I have had nearly every experience imaginable nurturing my daughter to the wonderful, loving, caring and determined young lady she is today and I know my learning will continue as she continues to develop as an adult, as we do with all our children with or without a Special Educational Need or Disability.

I am much more confident now, that she will be more independent than I could have ever wished for back in 1997 and know she will strive to achieve the goals she now sets for herself as she has for the following...

Duke of Edinburgh Gold Award
National Citizen's Award (Engage for Life)

...We have climbed over that rainbow we thought we would never climb;
seen our dreams come true  and watching them as they continue to come true
and now I want to enable and empower others to climb the autism rainbow too;
explore their aspirations and meet their goals in life and reach their full potential

...see my 'Over the Rainbow' services ...it will be a privilege to hear from you, Support, Mentor and Coach you in your experience of living successfully with autism....

                 ...'My daughter still has autism BUT autism no longer has her!'
                         
                                  'Somewhere over the rainbow dreams come true'...
                                   We've climbed over the rainbow...
                                    I believe you can too...ü


1. PAYNE, M. 2010. Supplement Therapy:Rescue, Repair, and Reconnect. In:SIRI, K. & LYONS, T. ed. Cutting-Edge Therapies for Autism. New York:Skyhorse Publishing, pp374.