As a parent of an Autistic child, I was shocked to find that there was very little, if any support available to parents and carers facing life after diagnosis. What was given to me when my child was first diagnosed were out of date telephone numbers of haphazard support groups. Set up and run at odd times of the day (no good for working parents like myself) and for short periods of time once every so often.
For a parent with a child newly diagnosed with Autism, the outlook is pretty bleak. You’re on your own. From this day forward, it is up to you to go and find the support, contact the local authority, negotiate with your child’s school. You’re alone and what’s more, people start to turn their back on you. The birthday party invites stop coming. The other parents in the playground after school aren’t comfortable around you anymore so they move away. It is like you and the air around is infected. The ignorance of people is astonishing.
I fought the following years to get help not just for my son but for me too. No one told me what life was going to be like. You ache for the life you thought was going to be. You grieve. Jon didn’t just have Autism, but a little known condition called Pathological Demand Avoidance syndrome or PDA for short. (Still not entirely accepted by the medical profession, as a professional myself, I intend to change this point of view.) The picture of Jon was taken about a year before he was diagnosed with double Scoliosis – a condition which effects the development of the spine. He had two severe curves, top and bottom by the time he was 15. He has been through corrective surgery now and is improving.)
(Jon and I were always people who never did anything by halves..)
Like all the massive hurdles in life, you want there to be a welcome from somewhere. I would have handled those first years better had there been someone I could turn to when things became darker and the days went from one battle to another.
If I wasn’t battling for recognition from schools, the council, family members, employers, I was battling with a son I didn’t know anymore, who was slowly slipping away from me.
Then I got smart. Once you hit the bottom, the only way is up, so they say. I got educating myself from that day on. If no help was going to be out there for me, I was going to create some of my own. After all, great creators in life make opportunities where they cannot find any.
It was many years before I found exactly what I was looking for. I discovered techniques, took diplomas in therapy, read books, visited experts and travelled over 8,000 miles to get to be face to face with the best in the world.
I had to look for answers for how I could help my child find the way through again and back to a life that, well, he deserved to live.
I started to educate other parents in what I had found. I wrote a book that became a best seller on Amazon. I spoke to yet more and more experts and got invited to talk at major events to hundreds of other parents and carers who were, just like I had been, all those years ago.
But I wasn’t satisfied entirely with what I was doing. The more I researched into what services were out there across the UK, the more I found that there were better services in some areas and not others. In parts of the West of the UK, support was non-existent. I had to ask myself, ‘how the heck are parents managing?’ The answer was that they weren’t. Or it would be truer to say that they were struggling and because of this, both they and their children where,
losing out badly on the life that they could have.
No one should ever have to deal with Autism or any conditions on the spectrum on their own. No parent, no child, no adult, no carer.
There was only one thing for it. It had to be down to me.
I had lost my job recently due to ill health (the attempt to juggle a job a 100 miles away full time and be there for Jon after school each day took a massive blow to my health and my confidence.) I was still learning to cope myself, despite all the knowledge and experience I had built up. I was on my own. Now it was about survival.
The brain has a default state. It is called survival mode. It is animal but it is what connects us to every living thing on the planet. The overwhelming desire to keep alive and keep going.
When the s**t hits the fan, it is amazing how creative you can be.
I had computer skills. I had been white collar, pen pushing, public sector work for the last 20 years. Ironically, I had worked in the Safeguarding Sector where Adults and children who were also on the spectrum had been under my departmental care.
I had spent a decade serving the community in emergency services caring for those who could not care for themselves. I knew the strain the NHS was and always had been under. I knew that asking for help, my voice now, would be a whisper in the wind, unheard and gone.
I found that the best form of support was the connection we make in the world.
In an ever-increasing dependency of the internet, we find our support and help online, but often at the expense of our pocket, often getting ripped off or treated badly by the people we hope we can trust.
I wanted to design a community which was transparent. Where the aim was trust and more trust. Where parents and carers could access care, support and help at any time night or day, regardless of where they are in the country, what lifestyle they have, income, social status. Where everyone could be welcomed and offered more support than they expect.
I needed somewhere where I could over-deliver day after day. Offer both professional and personal help in an environment where everyone had a say and everyone had access to everything they need to get through the day, or even get through the night.
So, it was here, that the Mentoring Hub was born.