THE hardest decision was not why I wanted to climb Kilimanjaro but who I wanted to do it for.
I am mother of six children, ages 17, 12, eight, five, three and 15 months, four of whom are on the autistic spectrum. Before you turn the page and think “Oh, for Christ’s sake, not this autism sh**e again”, stay with me.
Prior to my now five-year-old son being diagnosed back in 2016, I hadn’t an iota about autism. I stupidly thought of Dustin Hoffmann in Rainman or an aggressive person in a corner, lashing out and rocking back and forth.
We were thrust into a realm I often compare to Harry Potter, suddenly things you didn’t take any notice of before appear before you, a wizarding world. It is obvious now who the other wizarding families are and why muggles stare at you as your wizard demonstrates their unique abilities.
Your child has been given their sorting hat and is trying to figure out what House they belong to. You are left to deal with the Ministry of Magic and all that entails while the Dementors, who I often compare to lack of services and supports, suck the life out of you. I realised up until this point, a lot of people I knew, were muggles and I had no one to discuss magic with.
I think for anyone reading this who doesn’t have autism in their lives, the most important thing I need to stress to you is that, as parents, we left the hospital none the wiser either.
It is not like we were handed a manual and just chosen at random in the hospital. Au contraire, mon ami, it is each man for themselves and go figure it out.
Imagine, if you will, you are handed your baby and then told, “Eh, before you go, just one other thing, look, he may never talk but sure you might find someone who will help you at some stage, think the next appointment free is possibly when he is five. He may never respond or communicate but we will put you on a list there for a course, but just to let you know there haven’t been any services now in your area since 2015. The chances of him finding a school place are slim to none but if it doesn’t happen, sure just keep him at home with you, or do you know what you do, get onto a TD.”
You find yourself sitting at home with a screaming, frustrated child, crying as you have no clue what to do or where to turn. I had two choices, sit and wallow in this, which is not going to be of benefit to me, my child or the rest of my family, or get proactive.
This is what prompted me to start my own blog, to create a space for other families going through something similar. ‘Out in the Sticks with Six’ was born with the intent to try and help other people who had just been given a diagnosis and had no clue where to start.
I certainly didn’t think I had all the answers but by Christ I would try my best to point these parents in the direction of those who could.
It has now snowballed into so much more, a tribe of really supportive people, it’s not just about autism, it’s life, my sarcasm, it’s the chaos of a big family, grief, renovating a house, school runs and now treks to Kilimanjaro.
Ironically, it was lack of services and help that pre-empted me to read and educate myself further. It was through this and a rollercoaster ride of the past three years which has led to three more of my children being diagnosed, two of whom were missed completely by professionals.
Girls are diagnosed two years later than boys as all the diagnostic criteria to date is based on males.
I am of the opinion personally that the whole assessment process has become a cattle mart where vulnerable parents crying out for help can be exploited and are totally naive as to what they are being told by professionals, who are not always right, and are basing your child’s needs by ticking off boxes.
It was reading about females on the autistic spectrum which led to my own diagnosis of Asperger Syndrome this year. Imagine that. Here I am helping people and sharing our journey and the whole time I am also autistic. The irony.
People often say “I think we are all a bit autistic”. To me that is like saying you are “a bit pregnant” either you are or you’re not.
You may have experienced heartburn and nausea at one point so you can certainly empathise as to what that may feel like, but unless you are pregnant and experience that, then you can’t possibly know what it is like. But relate to elements of it? Absolutely.
Autism is not a one size fits all. It is not necessarily a child screaming in a supermarket aisle, it is not a teenager with a calculator brain or an adult rocking back and forth.
It can be a parent, a teacher, a friend, a colleague, etc. We are under the impression that autism presents itself only in children who are being bold and always causing trouble.
Einstein, Michelangelo, Leonardo da Vinci, Sir Isaac Newton, Mozart, Charles Darwin, WB Yeats, Lewis Carroll, Steve Jobs, Bill Gates, Emily Dickinson, Hans Christian Andersen, James Joyce, Tim Burton, Anthony Hopkins, Andy Warhol, Charles Richter (Richter Scale) were all autistic.
Many speculate that Abraham Lincoln, Woody Allen, Jim Henson, Alfred Hitchcock, Jane Austen, Thomas Jefferson, Beethoven and Thomas Edison also were. It seems sometimes you need a dash of autism so you can look at things from a totally different perspective and create new, untrodden ways.
I saw a clip of people climbing Mount Kilimanjaro about ten years ago now and thought, as I sat on my couch, ‘Jesus, I would love to do that some day’. As a parent you well know sometimes you lose a bit of your identity, the person you were before you were a mother, you struggle to accomplish personal achievements other than finding his socks and the top for her uniform.
Having lost someone very close to me 15 months ago I realised that time is nothing. If I want something then I need to get off my ass and get it. I can scroll social media all day and reply to messages, but other than fleetingly helping someone, it isn’t changing much. Time to stop posting and start doing.
My 40th birthday is looming and I decided, instead of a party, an Aspie’s worst nightmare, I will have a ‘40 at 40’, a list of 40 things I want to accomplish when I am 40. This is one.
I thought, if I am pulling this off then I am doing it for charity.
I have spent the best part of the last few years putting myself out there and sharing our journey and, like any other parent trying to access what every child in Ireland should have regardless of their diagnosis, help and an education.
I am sick of the sound of my own voice, if I am going to talk the talk then I need to walk the walk. 19,341ft of a walk to be precise.
This is the pinnacle for me, I’ve overcome so many mental mountains to date, I’ve been very open about my anxiety, depression and mental health. I want people to see I am more than just a diagnosis and to de-stigmatize people’s perception of autism.
I am of the opinion that we need to help those who DO provide the help and services we are crying out for. Sonas Junior Special School, Shine Centre for Autism and The Irish Guide Dogs do exactly that.
Over the next 12 months you can follow my story and my journey to Kilimanjaro and back, I will discuss in detail why I chose the above to be the recipients of my fundraising, how they have changed our lives, made a phenomenal difference to our family and how I am aiming to raise #20KforKilimanJ with three more individuals I have roped into doing this with me.
I have set up https://www.ifundraise.ie/4888_20kforkilimanj.html in the hope that each person will sponsor me. The cost of my trek will be covered by myself and a sponsor, as I am adamant all monies raised goes directly to those for whom the fundraising is for.
Details on how schools, businesses and individuals can help participate can be found by email firstname.lastname@example.org
You can follow Lenore on Instagram and Facebook, Out in the Sticks with Six