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!
