Former Blanket columnist Dr John Coulter is challenging any of Ireland’s top media presenters to spend a few weeks with his family helping to care for his severely autistic teenage son so they can fully understand the disorder.
I really need top BBC broadcast shock-jock Stephen Nolan to spend a few weeks caring for my severely autistic teenage son. If TV investigative legend Louis Theroux can make a heart-rendering and compulsive-viewing documentary about people in America with autism and their carers, then maybe Big Steve would take up my gauntlet of a month at the Coulters. And if Big Steve can’t spend the week at the Castle Coulter’s Autism Chaos, then maybe top Southern presenters Pat Kenny or Ryan Tubridy could take up the challenge. Louis’ show hit the nail on the head about the plight of carers who have to cope 24/7 with the challenges posed by their autistic relatives.
The Assembly once succeeded in getting the North’s first Autism Bill passed, but its supposed boost for sufferers and their carers was lost in the political wrangling and point-scoring among the parties. I wish Louis had made his show in the North. With hard-hitting cuts about to slash the health budget, many carers feel those with Autistic Spectrum Disorder (ASD) will be relegated to the bottom of the cash heap.
Autism does not respect class, creed, colour or the Irish border. The spectrum is expanding with each year, and so do the challenges.
Uppermost in my mind at all times is who will care for my son if God decided my wife and I were to die in a car crash? Sounds morbid, but the reality is even in his teens, we have to prepare for my death. Unlike some other conditions and disorders, there is no reason why my son should not live “to a ripe old age”. That’s why we ASD carers urgently need big name Irish broadcasters to spend more than a flying visit to gain the true picture of what caring for an ASD teenager really involves.
And let’s not forget that spectrum has widened considerably since my son was first diagnosed in November 1997. There are many, many more kids and adults on that spectrum who would never have been considered in 1997.
Daily life is a far cry from the glitz of the hit TV series, Alphas, which features the autistic genius character, Gary Bell. It can be a depressive grind with seemingly very little progress to show after nearly two decades of loving care.
My son doesn’t talk. I’ve never had a father/son chat with him. I would give my right arm simply to hear him say, ‘Daddy I love you!’ Sometimes for no apparent reason, he throws a violent wobbly. If I am home, I can control him by pinning him to the wall. If my wife is alone, she gets thumped or head-butted.
My family has had a terrific tradition with the Christian Boys’ Brigade movement. I am often reduced to tears as other healthy lads cycle their bikes, get involved with BB activities and learn to drive. My son will do none of these.
The worst time is the summer when people walk their dogs off the lead through our development. My son loves cats, but is hysterically terrified of dogs of any breed or size. On beautiful sunny evenings, because we have an open plan garden, we must bring our son inside around 7 pm in case a stray dog off the lead comes towards him. That will trigger an epileptic-style fit, ending with him vomiting.
If my son wants to play after 7 pm, I have to guard him with my AK47 bb gun. It’s like a scene from the Redneck horror film, Deliverance – except I’m the armed Redneck, ready to shoot any off-the-lead mutt that danders onto my turf. My thanks to sensible pooch owners who have their dogs on a lead.
How do you encourage my son to try new food when all he wants is three sausage suppers a day, with some KitKats and Smarties?
He has a supposed quiet room where he watches his two favourite movies, Jungle Book and Ants AT FULL VOLUME!! He constantly plays back short sequences over and over again.
We need an alarm system whereby if he got up at 3 am and decided it was 3 pm and time to go outside and play on his trampoline, we must know he is on the move. Some mornings he will not settle to sleep until 5 am – and then I’m up at 6 am for work.
If Big Steve made one of his no-nonsense packages for the hit TV series, The Nolan Show, then we might be able to guarantee a worthwhile slice of the ever-vanishing health budget cake. Any takers?
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John,
ReplyDeletethis is a very touching piece. Thanks for sharing it with us. It puts our own challenges and difficulties into perspective.
I read something somewhere where a parent said "you don't know the definition of hell until you have an autistic child" Always gave me the chills thinking about it. This piece confirms that quote. I'm really sorry John. Let's hope for a cure, and soon.
ReplyDeleteAgree with previous comments John,my heart goes out to both you and your wife,your love for your child is amazing and I hope that sometime you get your just rewards,I have two friends with autistic children ,both single parents one the father cares for his son alone ,his wife couldnt cope and walked away,he had to give up his business to become a full time carer,the other is a single mum, her son would physically make the incredible hulk look puny, he recently ran of while on a vist to Lady Dixon park was found by police that evening wandering up the M1,your and their fear for your childrens future is more than justifiable and measures should be put in place where care will be provided after either you and your wife pass on or cant cope,it would in some small measure give you some peace of mind I,m sure, you are an articulate man John use your skills to highlight these concerns and daily problems hound your mp and mla and councillors,( you probably are already)A very moving post John good luck and I hope you and your wife get the help and peace of mind you both deserve
ReplyDeleteJohn
ReplyDeleteOn the face of it you have conveyed what is for you, and your family, quality of life. You have done so matter of factly in a very moving way.
But then, I figure you have probably not told the half of it where many other, lets say inconvenient, things have become so second nature to you and your wife that you both may not realize that most other families do not have that in their lives.
I hope that Nolan or someone takes you up on this.
John
ReplyDeleteA very moving piece, with these cuts the disabled are increasingly being pushed back behind closed doors, but those who care for there love ones as you and your wife do have always been societies forgotten people.
Unless something like this comes into our own lives most of us cannot imagine how valiantly you daily live your lives.
My sisters son has a three year old boy who is disabled, he is an absolute joy yet it breaks my heart when I worry about the difficulties he will face in life.
It makes me as mad as hell when I hear the media and reactionary politicians claiming disability benefit, etc are given out at the drop of a hat. As far as I can see, every thing has to be fought for. My admiration for my nephew and his wife grows by the day. This may seem a silly and thoughtless thing to say, but in many ways it has been the making of him.
Thanks for sharing this with us John.
Mick
John
ReplyDeleteThe humanity of what you have written has taken my breath away. Thank you for writing this article, Sincere Thanks.
You and your family will be in my thoughts
John,
ReplyDeleteI sincerely hope one or more of the media presenters accept your challenge.
It would be a revelation for many who are unaware of the struggle Autism brings to a family.
The headline says it all and politicians should not play politics when it comes to very genuine issues of health and disorders.
People should be very concerned with the erosion of healthcare.
My niece is autistic so I can relate to your poignant article on a personal level but can only imagine the distress the fear of uncertainty brings you.
I have had many conversations with my sister and she expresses the same very genuine concerns and anguish
Best wishes John to you and your family and if any of the media presenters accept, your challenge that would provide the imagery that words cannot express.
John, My heart goes out to Your Son,Yourself and your good Lady.
ReplyDeleteI watched a few programs about autistic children and adults, nothing was shown about head butting sleep etc, you all deserve more help, it cant be easy for parents/careers. I hope you get your wish.
John this was very moving, humbling and real as real... Decades ago i did a placement working with autistic kids... If I felt like I had been drained and all energy sucked outta at the end of a shift how did the parent/s/fulltime carers feel... I can walk away - parent/s & carers cannot. It is truly fullon and I salute you, you family for your upfrontness & dedication of love for your son. Fight on...
ReplyDeleteNB Have you considered making Youtube video and agitating that way?
You know how your boy loves those two movies and playing segments in a loop - am sure you know this but anyways will say it just in case. He is blockading - feeling safe inside a wall of familiar, specific sounds that creat a meaning. So to introduce new movies/sounds is the challenge ongoing... Kinda like comforting himself. There is a book you may have read? by physician Oliver Sacks Musicophilia pub. 2007 (if not read - it's a worthy read - just get it from library) Look up what he wrote for Autism and music.
You know how you believe in God (i do too but hate religion) well i believe the spirit inside an autistic kid reads the love What the flesh and cognition cannot do the spirit can... I am certain he loves you as you him.
PS God is gonna be asked alot of questions in the next life as to the whys of suffering.. See you & your fam in the queue. You are totally entitled to go ahead of me.
Saint?MaryHedgehog
ReplyDeleteThat was a very thoughtful response or at least it made sense to me.