How to ‘Hold It Together’ as a Special Needs Parent – Fighting a good Fight against your Local Education Authority

When my son was around 4 years old, I had to admit that I couldn’t do it alone and that I needed professional help!  It’s been an ongoing battle ever since. 

At that time, I secured a Statement of special educational needs, which later became the EHCP (education health and care plan). As I went about these tasks, I was confronted by one challenge after another and came to the obvious conclusion that there is a huge gaping whole and major lack of support for parents of non-neurotypical children. 

The experience was highly emotional (amongst other things) and was the inspiration for launching Raising Spirit. My ambition, to support parents undergoing challenging circumstances using a combination of coaching, my experience in complimentary healthcare and specifically reflexology. 

LOCAL EDUCATION AUTHORITY 

Having battled with the local education authority (LEA), before to ensure my sons needs were properly described in his EHCP, I had some idea of what to expect in the fight for a specialist secondary school. 

However, my previous experience had left me with chronic fatigue and exhaustion - as a single working mum my life had got on top of me. Due to the stress and strain and working long hours, I had thyroid issues caused by adrenal burnout. So, this time, I planned to increase the self-care as I set about requesting updates to his EHCP and work towards secondary

I have my book (available soon) and coaching programme – A six-step, self help guide for parents of non-neuro typical kids. How to do more than ‘survive’ as a SEN Parent. However, despite that knowledge, just one whisper of the LEA is enough to send shivers down my spine. My stomach literally turns with anguish and anxiety.

SEN Parenting - mental, emotional and physical health

Parenting a child with special needs - be it a physical disability, a learning, emotional or behavioural challenge (diagnosed or undiagnosed) with ADHD, PDA or Autism or any other related challenge - all increases the demands of parenting.  

Research has shown a huge impact on parental wellbeing: increased problems with family and marital relationships, parent-child relationships, reduced parenting abilities, increased levels of stress and or mental health complications.

In my case, it has meant that I now suffer with a condition called Fibromyalgia. A chronic condition of widespread pain and profound fatigue. It falls into the bracket of PTSD  (post traumatic stress disorder) and impedes my ability to function as I once did. My parenting journey has impacted my health and the story is similar for what is estimated at over a quarter of special needs parents.

Across the national news and the internet forums there are hundreds of articles discussing the practicalities and impact of being a SEN parent.  Some have argued that PTSD is not a correct diagnosis for these groups and that Chronic Traumatic Stress Disorder would be more appropriate. We are living in it – day in day out - caught in a continuous cycle of anxiety and trauma, fear, guilt and stress. Constantly advocating for our children as well as trying to support them the best we can. On top of this we have to fight tooth and nail to access support and navigate the NHS, education system, social care system and other public services. 

THE LOCAL OFFER

My most recent experience of our local authority included: my son’s case erroneously being closed down; reports and assessments strangely going missing; phantom letters being sent and never received; multiple changes in case workers; waiting months for any progress to be made; and discovering that the LEA had consulted with a local school - who officially offered him a place! This may seem like a satisfactory end to a challenging time but not when you consider the school could not meet his needs and would prevent me from doing my job.

After all the months of trauma I found myself in what felt like a hopeless situation. A Panel of strangers from the local authority would make a decision that would put my ability to work in jeopardy.

AVOIDING TRIBUNAL

Trying to defend our case, I relentlessly tried to make contact with the Head Teacher of said school to no avail. For 7 days I called, emailed, left messages and pleaded to be heard. I sought the advice of a colleague - Amanda Sokell an Advocate who supports parents with knowledge of legislation and legal rights  https://community.amandasokell.com/  

Amanda’s practical advice was priceless, amongst other things, she suggested a co-production meeting ahead of the SEN Panel. This would ensure the case worker was fully informed of our case and my son’s specific needs. 

This literally saved my bacon and eventually allowed us to avoid Tribunal. As a result of the relentless fight to be heard and the torment that went along with it my health was exacerbated. With more and more stress, tension and anxiety building in my body, I was in tremendous pain - which in the end meant I needed more help through medication. I was also financially hard up due to being self employed and enduring a massive loss of income. Some spend up to £30,000 on legal fees to get some level of peace of mind around the ordeal – not a financial commitment afforded to me. 

Short term, the impact of handling the LEA meant I was in pain, my mental health was suffering, I had high levels of anxiety which created more tension and pain and I was needing to medicate. To top it off my parenting abilities were impacted due to my health and my stress levels hitting the roof. Long term the implications of my son not getting the right school were life destroying and devastating. 

WALKING THE RAISING SPIRIT TALK

My choice has been to use alternative channels such as homeopathy and holistic treatments to support my health. However, I’ve always advocated – that a combination of pharma and complimentary healthcare provides balance. For the past few months, I’ve had to compromise on my ideals and go with the mind frame of needs must! The medication alongside my usual entourage of supplements, homeopathy, yoga, vitamins, hot baths, crystals, good nutrition and positive thinking certainly helped. 

TOP TIPS FOR SURVIVAL

• Do something for yourself every day - a walk, a bath, a nice meal - whatever you can to give yourself some nourishment

• Yoga or gentle stretching to get some head space and tune in to your body

• Meditation

• Talking to friends - sharing the load

• Asking for help - find someone who has been through it or understands the law 

• Going to the doctor - if you need medication to help see you through - do it!

• Get enough sleep, parent YOU as well 

• If you can, get coached – awareness is crucial. How you are doing? What is your next step?

• Have positive friends that help lift you up – avoid anyone who doesn’t!! 

• Stay strong, focus on the outcome needed, don’t take no for an answer and keep going

• Remember everything is transient, this too will pass

EMBRACE THE CHAOS, ITS ONLY TEMPORARY 

Witnessing my life spin out of control, battling the system, parenting and managing my own health condition whilst attempting to work meant much of my self-care ritual went out the window. This in turn made my health condition harder to manage and one thing led to another! 

As a coach, I’ve worked extensively on myself, which I’ve developed into my Six Step programme specifically for SEN Parents. However, at the hardest of times, with the best will in the world things get on top of you!  

I can’t stress enough the importance of self-care but also community. Without compassion and understanding and feeling you are not alone you can easily downward spiral. For this, I have an amazing circle of friends.  There is no food, exercise or self-care regime that can replace them. To have a community is to be heard, it’s a foundational human need. 

COMMUNITY AND FRIENDS

I advocate for the non-neurotypical community and for SEN families. My personal experience brings a great deal to the work I do.  Supporting parents undergoing challenging circumstances is my passion. 

The reality is that the education, social care and health departments - that were once trusted to advocate and help families - are unfortunately so deprived of budgets that they are using whatever strategy possible to not support children in need.  Unfortunately, the lives of families having the hardest time are made harder by the very support systems that were put in place to support them.  

My story is not uncommon – I was fighting to not be forced to give up work and rely on the state and benefits system.

NEW - GROUP COACHING COMMUNITY

Taking my most recent experience forward, to be able to inspire and help others, Raising Spirit is about to launch a group coaching programme. More information will be coming soon. Group Coaching provides the opportunity to work together, to connect and feel supported – to be heard and to have a community. 

I have been so lucky with my friends – always offering plenty of hugs and understanding. My ambition will be to duplicate my friend circle with the professional coaching, knowledge share, compassion and understanding that will come from other SEN Parents. Together Stronger! 

Dog walking with one of my besties - The amazing Practitioner of Positive Psychology

amyshefik.com

How does coaching help parents of children with special needs

EMOTIONS OF PARENTING CHILDREN WITH SPECIAL NEEDS

The journey of parenting is a tough one regardless of what sort of child you parent. There are all sorts of emotions to handle, guilt, worry, anxiety, competitiveness, feelings of fear, frustration or even resentment. Of course, there are the positive emotions too but we tend not to focus on those when life gets challenging. It’s the ‘hard’ stuff that we put under the magnifying glass and can often lead us to a place of overwhelm. Balancing money worries, work commitments our own health, friendships, sleep and wellness.

Now, magnify all of that bigger, and bigger and bigger and bigger. Then you can start to imagine what life as a parent raising a child who has ‘special needs’ might involve. Special needs could mean the child is on the autistic spectrum or have physical, emotional, social, developmental or behavioural challenges. It means that what you might ‘usually’ expect from your child – what you had planned for – is unlikely to be happening. It also means that it is most likely that alongside one challenge or disability or delay there are any number of other challenging factors as a result.

As anyone knows, parenting was never meant to be an easy journey but when the usual mile stones are not met and words like developmental delay are voiced it brings with it a vast array of complex feelings and emotions for the parent of a child with special needs.  Fears, exhaustion, helplessness and loneliness to name a few. Quite often the system and society we live in contributes to this further - leading to more anxiety, stress and worry. A lack of compassion or understanding from your partner, family or school. Or balancing the needs of a special needs child and their sibling. Quite often this is all impacted further due to having to pursue different types of support - from social services, the national healthcare system or the educational system. 

COACHING FOR PARENTS OF CHILDREN WITH SPECIAL NEEDS

Some of the issues that you may be challenged by as a parent of a child with special needs include: 

• Fully accepting their needs

• Becoming your child’s campaigner and advocate

• Handling the education system or healthcare system

• Establishing a routine or lifestyle that best supports you and your child 

• Connecting to yourself and fully understanding your fears

• Creating awareness in your child’s school, peer group or your own peer group or family

Coaching can be used as a space from which a clear sense of direction can be identified. A place where you ask ‘what now’ and ‘how’ and look at your options in a supportive partnership which will assist you in identifying the hurdles and emotional pitfalls and lead you to discover more empowering ways to live your life. 

HOW COACHING HELPS PARENTS

Coaching can help you to become more self-aware and enable you to identify thoughts, patterns and beliefs that are not serving you as a parent. Coaching can help you to find the areas of your life that are impacting your relationship with your child and support you to connect with them more fully by first connecting with yourself. 

It is my passion and mission to support as many parents as possible through Raising Spirit. 

I believe that as I have first-hand experience of what life is like to parent a child with complex barriers to learning and a host of physical and social challenges, I am able to share some of that vulnerability – having lived through it.  I intend for my experience, compassion and empathy to support other parents of children with special needs and to make a long-lasting impact to your life. 

My personal experience and understanding of what it is like to parent a child with special needs allows me to hold a unique position as a coach and complementary healthcare practitioner. My ambition is always to help you ensure your personal journey raising a child with special educational needs is met with compassion for your child but also and most importantly for you as a parent.

“Start by doing what’s necessary then do what’s possible; and suddenly you are doing the impossible.” Francis of Assisi  

The power of reflexology for SEND children

How symptoms associated with non-neuro typical children, autistic spectrum disorders or those diagnosed with developmental delay or learning deficits can benefit from regular reflexology

Global delay & learning deficits

My son, was diagnosed with a ‘global delay’ early on due to having hypermobile joints and low muscle tone. He didn’t walk until he was almost three and all developmental progress was slow. His first tooth finally appeared at 14 months and the entire process was agonising for everyone. 

‘Global delay’ is the term used when a child isn’t hitting developmental milestones in one or more areas.  With my son it included gross motor (due to low muscle tone), which led to fine motor challenges (creating issues with self-care and eating). As well as speech & language delays. It seemed across the board he wasn’t quite where he needed to be. 

Toilet training struggles

At the age of almost five, it became apparent he had digestive transit issues as well. He had always presented with a slightly distended tummy but he was having regular bowl movements and no one had voiced any concerns. However, despite successful toilet training with No’ 1,sorting No’2 was proving to be a considerable challenge. It was after months of getting nowhere, I managed a referral to his consultant at the hospital who upon extensive examination and a number of X-Rays diagnosed ‘severe faecal impaction’. Despite regular movements, what we had seen was an overflow scenario and he was literally ‘full of it’ from top to bottom.

The PACE clinic at our local hospital had over 250 kids on the books at that time, in our area alone, with parents suffering the same situation. Ours was a particularly severe case and it would take over a year to sort – possibly a lot longer and there were no guarantees! 

Faecal Impaction

We set about a programme of careful nutrition, a gluten free diet, pints of a drug called Movicol (to loosen the stools) and daily reflexology. Having trained with the Bayly School of Reflexology back in 2004, I had long used my knowledge to help with his various childhood symptoms, but my experience really came into its own with this situation. 

I would stimulate the colon, lymph system and intestine reflexes on a daily basis (sometimes twice daily) and to the astonishment of the consultants, Santi was clear and toilet trained in under a year. It took significant effort with added extras such as juicing raw beetroots before school (to aid digestion). He had many days out of school and on the days he did go, he took up to seven changes of trousers and pants with him for his Teaching Assistants to deal with the inevitable. At times of major ‘clear out’ he was kept out of school, it took three stints of up to 8 pints of Movicol Paediatric a day to fully break and evacuate it all.  I did not use nappies – as in the long term it would set us back with toilet training. It was SO tough, looking back I don’t know how we got through but the pain was worthwhile. The regime worked. 

Had it not been for my knowledge of anatomy and very careful management of his diet and fluid intake as well as reflexology he would no doubt still have issues. We met many children with parents along the way, I always tried to offer as much guidance as I could and encourage them to carefully manage nutrition. My results came from my full commitment to the regime. It is my belief, that had I not been able to complement the medical treatment with Reflexology and stimulating the bowel, we would not have arrived to the healthy boy I have today. 

Digestive transit issues associated with special needs kids

My son is not diagnosed with autism or any other ‘syndrome’ but he does attend a special school to help compensate with his learning difficulties.  The challenges we face on a day-to-day basis are similar to children on the spectrum. He has sensory processing challenges and various other developmental and neurological difficulties. Throughout our journey, I have gained an incredible amount of insight, knowledge and experience of the world of SEN (special educational needs), and the struggle that many of the kids and parents face both emotionally and medically. 

For my son, the doctors did not give any concrete explanation of how or why it happened. In my view it is threefold: 1) a slower peristalsis and digestive transit due to muscle tone, 2) less activity in his early years than an average toddler due to hypermobile joints and difficulty moving around, 3) IBS related symptoms due to his various challenges / anxiety playing a factor. 

The picture is similar with many of the other children I have met. It is very common for children diagnosed with Down’s syndrome to suffer from low muscle tone and faecal impaction. It is also very common for children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), Autism (ASD), Pathological Demand Avoidance (PDA) and Sensory Processing Disorder (SPD) to suffer from anxiety related gut / brain issues which create IBS type symptoms. 

Reflexology – a little goes a long way

Relaxation, as all of us know, is such a crucial aspect to reducing stress and anxiety related issues. In my experience with non-neuro typical children there are complex issues that result in a host of digestive transit challenges. The brain gut connection is so fundamental. If you consider that people with anxiety related issues suffer from IBS and related problems, then it is logical that children who are stressed - due to sensory challenges - are likely to have similar problems with their gut. Many have very sensitive systems and need a very ‘clean’ diet. It is important that parents are empowered with techniques to combat these situations. By looking at diet and learning some simple reflexology techniques parents can really start to support their child’s digestive transit as well as create a state of calm – which is going to be hugely beneficial. 

Quite often it is impractical to offer a ‘full Reflexology treatment’ to children – especially those with hyperactivity or other challenges. In my experience a small amount of reflexology, on a regular basis can assist in a number of ways. Firstly, the relaxation benefits of treatment as it is incredibly calming, and this is invaluable. Stimulating the solar plexus point provides relaxation, the spine works on the neural pathways, the digestive tract tackles anxiety related IBS symptoms and the lymphatics system increases elimination. This all goes a long way to good health and on small feet can be treated within 10 minutes. 

Every little helps with a child with learning difficulties, developmental delays, special needs or any of the many syndromes and other diagnosis that are appearing. 

Helping parents

Parents of SEND children have to be incredibly resilient.  I think we would all agree that creating a space of calm would be top of our list.  Whilst a full reflexology treatment on us (as parents) would also be wonderful, equipping ourselves with as much knowledge as possible to support our children is often our priority. All we want to do is the best we can for our kids. Reflexology is non-invasive and hugely empowering for SEND parents. Encouraging knowledge share of how Reflexology can help support SEND families is one of the pillar stones behind Raising Spirit. 

On a SEN Mission: Striving for a better future for parents of non-neuro typical children

This is my first blog to welcome you to Raising Spirit. 

It took adrenal burnout, a near breakdown and the loss of my major work contract to tip me over the point of no return and to seriously re-evaluate my life and what was going on for me. An unfulfilling career had been an ongoing factor for years, but as a single mum with a child on the disability register – the contract was a 'god send’ ! It enabled me to work from home, exhausted but not be seen, cry and have no one be any wiser. At least I was being paid well and could wash the shitty pants and scrub the toilet when required in my lunch break!

Life was good!!

Well, I survived but the fatigue started to take its toll after I eventually got my son into the right school. It had followed years of battle with the local education authority and ridiculous amounts of private therapy assessments, endless sleepless nights for one reason or another and having to move homes five times, that’s an average of every other year with a child with sensory issues – you get the picture!

So, Raising Spirit evolved from the fatigue and the need to get it all out, a cathartic process that before I knew it was 70,000 words long with one clear focus. Help others to get through their journeys and not end up in the same state as me. Turn everything i'd learnt into a positive attribute, all the hard times, all the pain - be a positive contribution.

Helping parents of non-nuero typical children find their way through the dark times and into the light has become my mission. The statistics speak for themselves, marital breakdowns, loss of careers, depression, anxiety, stress: These parents have the hardest job in the world and it is made harder by the systems, society and the fact it is just torturous loving our little spirits with all our might and wondering how on earth they will ever find their way.

It is utterly exhausting: finding the therapy, doing the therapy, getting the diagnosis, sticking to the job, the family. The demands are high and so are the stakes.

Raising Spirit, aims to reach these parents and help. Coaching, workshops, advice, alternative therapy guidance and resources. I hope your journey with Raising Spirit truly supports you on your path to a sense of freedom and peace of mind with your children.

A favourite quote:

“When you can’t control what’s happening, challenge yourself to control the way you respond to what’s happening. That’s where your power is!”

 

Clare x