As this decade comes to an end, I cannot begin to describe how awful it has been in so many ways, not just for us but for every one of my close friends. So much of what my friends have experienced has been sadly and devastatingly unavoidable. Two of my close friends have lost their partners to cancer, one friend suffering it herself more than once, job losses, and a variety of other weird, but never wonderful events, that have made these 21st century teen years, pretty unbearable.
Our situation is a little different. I firmly believe that a lot of what we have been through could have been reduced greatly, if Patrick had gotten the care and support that he needed back in 2013 when we first flagged his behaviour difficulties to ‘the system’. I can see now, with that wonderful little tool of hindsight, that Patrick was showing signs of Autism from a much earlier age than I realised. The earlier the intervention an Autistic person receives, the better their outcomes. It is like most other conditions, physical or intellectual, the earlier you know and take action, the better.
To protect his privacy, I have made a conscious decision not to go into graphic detail about Patrick’s meltdowns. I will discuss the challenges faced by many Autistic people in this regard, in my book (shameless plug), because I do feel raising awareness of this ultimate taboo, is vital in developing people’s understanding of how these challenges can be reduced and dealt with. This, in my humble opinion, is how we will achieve true inclusion.
I am an Autism Advocate, but I cannot accept that means agreeing that Autism is not a disability. It is at times severely disabling for my son and many other Autistic people. I also feel we shouldn’t hide from the word disability. Disability does not mean less, it means more support is required to achieve what a typical person takes for granted. Unfortunately though, like so many other words, disability has now become perceived as a significant negative.
Autism is not a disease that people suffer from, but at times people suffer as a result of the symptoms or presentations of Autism. That is why it is vitally important, that we as a society, do everything within our power to mange those symptoms. Such as anxiety.
What each of my children, and we as parents have experienced for the last 7 years, is devastating and exhausting for anyone to deal with and for the last 2 years it has been pretty much constant. Is it any wonder that at the tender age of (almost) 44, I look like a could get a bus pass!
I recently attended a Beyond Limits Summit, with a presentation, from a man named Jack Kavanagh. Jack is a wheelchair user and disabilities advocate who stated, that the biggest disabler, is the environment disabled people are in. We have found this is most certainly true. The lack of supports that are offered to people with disabilities and their families is neglectful of their basic human rights, to a dangerous level.
The most vulnerable people in our society, who need significant extra support to fulfil the daily functions, that so many of us take for granted, are given very limited tools to support them. Their families, in addition to providing extra daily care, have to continuously pull on their body armour and find the energy from their already depleted resources, to go into a battle for services.
We have to beg, please, demand and basically humiliate ourselves in a variety of ways to try and make our voices heard. Dealing always, with the guilt of knowing that if you shout loudest, you are drowning out the voice of an equally needy person. This year, I gave up my job to fight this battle.
In 2019, I have have had to involve the national media, local politicians, government ministers and threaten legal action. 3 times this year, I have presented at HSE buildings with a sleeping bag, refusing to leave until we get listened to and secured services that we are desperate for. Always packing my fanciest ‘sleepover’ PJs in case my protest ends up in the newspaper.
Often the agreed services and supports get cancelled or reduced soon after. We are very fortunate that we have the financial means for me to take a year off work, and that with my business background I have the skillset I need to take on the hardened and brainwashed guardians of ‘the system’.
Many people are not that lucky, what happens to their needs? The impact of this struggle, on my own physical and mental health, has come close to catastrophic. I totally broke down in Aldi recently, when some kind neighbours asked how things were going for Patrick bursting into floods of tears. My tear and snot stained face in the middle of the supermarket is not a look I generally go for whilst shopping, preferring a lightly made up face, with smart, fashionable eye wear to complete my look.
I am deeply saddened and angry that our beautiful little boy did not get the support he needed for six long years. Six years where he has been screaming in pain, for help through his behaviour. Six years where we have told ‘the system’ over and over again that we desperately need their support. Our pleas, backed up by teaching staff and therapists. Early intervention, would, in my opinion have made a significant difference to our circumstances.
My 6-year-old daughter, has never known anything but this difficult life, and now experiences the effects of trauma. My, almost, teenager has been forced to deal with situations, no adult should even have to. All three of our beautiful children, are completely blameless in the situation we find ourselves in and all three are at risk, a risk that could be mitigated.
There have been days when I feel I have completely lost my dignity as I’ve acted banshee like to try and get anyone to pay any kind of attention to our needs and give us some kind of help.
My daughter, Saoirse recently read ‘The Hunger Games’. I think the book may actually be based on the Irish Health Service. Children and young people are being left to fight for their lives. The resources are unfairly distributed, so some have a much better chance of survival that others. The people involved have to fight every step of the way to make any progress and if you live in District 12 (Rural Ireland) you’re deemed as insignificant, disposable even. Left to feel that you are pretty much screwed from the start. The odds, are never in our favour.
Just like Katniss Everdeen, I will fight to the death to protect my people!
It’s just a shame that I have to!
You can read more about Patrick’s story and some funny stuff about socks, hair and my crazy duck Johnny Sexton in my debut book.