The Late Late Toy Show is an absolute staple of Irish life. It is watched by most households in the country and in over 70 countries around the world. It is the official start of Christmas, and even though it often airs in November, the Christmas tree has to go up in time for the Toy Show.
Whilst it showcases the toys on the market for everyone’s Santa list, the toys are in fact, secondary to the children that appear on the show. To be totally honest I have been a little bit underwhelmed by it in recent years.
But this year, it was amazing from start to finish. It was a totally inclusive show, raising awareness of so many issues facing our children today, but never in a way that felt like it was preaching.
For me personally, the absolute highlight of the show, and cause of my tear stained face, was a young girl named Sophie, who did a beautiful job presenting an interactive storyteller device that could record voices of people who couldn’t be there right then.
Her own story unfolded through the segment. She is the older sibling to a little boy, Cian, with Leukaemia. What I appreciated so much, was, although Cian’s illness is heart breaking for him and the entire family, the show focused on Sophie and recognised what it means to be a sibling to a child with a serious illness.
I am very fortunate that none of my children have ever had a serious illness, and I pray to God every day that never visits our door. We do face challenges that are different for most families. Our son Patrick is Autistic and has ADHD, many of the challenges that Patrick has faced have been life altering for everyone in our family. For Patrick, experiencing the world as it is with an Autistic brain, can be very distressing at times, this causes him severe anxiety. Significant anxiety happens for about 80% of Autistic people, as the world they live in is not often set up to suit the way they experience it. Patrick’s anxiety, his distress and challenging behaviours it results in for him would be deemed extreme.
Being an only child, I never had to deal with sibling rivalry, never experiencing the level of irritation that can be achieved from a discreetly flicked ear, kick under the table or the satisfaction of your sibling being blamed for a crime you shamelessly committed in their name.
My husband is one of eight children. I often listen in wonder at the tales of what they got up to. Licking each other’s food, throwing each other out of windows into the snow and tales of exciting journeys to the beach, all piled onto a sofa in the back of a van.
I’ll never forget the night when Mick and I first stayed at his Mum’s house, where 5 of his siblings still lived. His brother Keith, after a night out crawled into the ¾ bed with us, and could not be moved as he had drunk a fair few Guinness’, this ‘three in a bed’ experience, was my baptism of fire into a big family!
But nothing prepared me for the kind of sibling experiences my own children face.
From the second Patrick wakes up in the morning, his anxiety engulfs him. It causes him great pain and distress, impacting him and the rest of the family greatly. Patrick shouts screams, screeches, and hammers on doors, waking you up as if you were an arms dealer being raided.
The anxiety he is experiencing coupled with the hyperactivity of his ADHD, means he simply needs to do this to be able to function and prepare for his day. This is how he is able to get through without combusting, he has to let it out.
He can often be so loud and obnoxious; you would confuse him with a drunken football hooligan. The fact he is part of our family and we love him dearly, does not make this behaviour any less annoying. That may sound very harsh and cold, but as it happens virtually every morning, it wears you down and leaves me feeling like Duracell bunny that’s been wrestling with a fox.
Patrick’s sister Saoirse is just like me, a night owl that would gladly stay up all night, because her mind is wide awake. The challenge of that is always, the impact that has on her mood in the morning. We need a JCB to drag her out of bed for school. I fake a chirpy, ‘good morning world’ attitude, when really, I actually want to headbutt anyone that dares speak. Saoirse as a teenager, simply is not programmed yet to do this and her interactions in the mornings would not be deemed ‘polite’.
If we get a grunt from her, then we are doing well. Patrick latches on to her morning fatigue, and goads her continually, following her around, pushing, poking and prodding at her and often screaming in her face. She isn’t a robot, this is very hard for her to deal with and sometimes she explodes.
I’ve said it before, Patrick isn’t a bad child, this is just a huge part of his conditions, this being linked into something called Oppositional Defiance Disorder. Home and his family are his safe space, and he only feels comfortable to do it here – that’s why most people never really understand how challenging it can be for a child with these conditions. Like I have said already, it doesn’t mean we love him any less, but it does make some parts of life a little harder to deal with emotionally and we need to recognise that.
People often think you are a saint, but really the reality is that it’s very frustrating and you spend half of your life gritting your teeth and swearing under your breath and sometimes out loud too. The other half desperately wanting to help your child who is suffering, feeling like you are failing them. Feeling like you are failing everyone.
Parents and siblings of children whose needs are different to your own, who experience the world in a vastly different way, have to change the way we live or do things constantly to support our child. We are happy to do it, but it is ok to say, that it is at times exhausting and as exhausting as it is for an Autistic person to try and adapt to a neuro-typical world, it’s also hard work to do it the other way around.
Many Autistic people do something called masking. This is where they do everything they can to blend in. They have been conditioned in society to behave in a way that is deemed ‘normal’. Autistic people will often mask automatically, acting as they feel they ‘should’ behave, leaving the sensory overload, the pressure of not always grasping what is going on by the way it is communicated, and feelings of being overwhelmed pushed down and contained like an unopened bottle of Coke, they push it all down and control it with an emotional.
When they get to their safe space the lid comes off and well – we all know happens when you take the lid off a bottle of coke that’s spent the day being shaken. Even a vileda super-mop, is simply not going to cut it in the clean-up of this kind of explosion. The explosion that ensues gets very messy, and you want to run for cover.
Saoirse and Erin, literally do have to run for cover some days. Saoirse’s room, having a lock on the door, is literally their safe space. If Patrick tries to get into the room with force, which has happened many times, they have an escape plan through the window and over to our neighbours’ house.
We have amazing neighbours, who have kindly given us a key to their home, so the girls can go in, even if they are out We didn’t even have to ask; it was their suggestion. That is what true acceptance of Different Needs looks like. It is not judging, not complaining, simply finding away to support those different needs being met.
Pre-covid 19, the extreme meltdowns had stopped happening quite as often. They did happen daily for a very long time, but we have to some extent got them under control, by working with Patrick to understand what was causing his anxiety and distress and to reduce or remove the causes as much as possible, and working with him on re-directing his distress, of communicating in a different way.
It is vital we all remember challenging behaviour IS a communication tool for people who do not have anyway of telling you how bad they feel right now. We need to listen to what is being communicated.
Luckily, the girls have never had to go out through the window, but they often get shipped down to my parent’s house, whilst Mick or I deal with the effects of Patrick’s anxiety, in all of our daily lives.
Erin now suffers from separation anxiety from me, as she doesn’t want to leave me as she has spent so much of her early childhood having to be removed from the house for her own emotional and physical well-being. In that situation of chaos and fear, all she wants is her Mummy or Daddy to make her feel safe. But we cannot always offer her that.
Saoirse simply doesn’t want to talk about the way it makes her feel, but just like that bottle of coke, that emotion has to go somewhere and sometimes explodes. Both girls have experienced things no adult, should even have to, watching their brother in so much pain and feeling it themselves.
Patrick doesn’t always become aggressive with the girls during a meltdown, but he gets very loud, agitated and it can be really scary. I sat with Erin trying to do her homework earlier this week, as she had asked me to do it instead of Daddy for once. She wanted to sing me her songs, and I so desperately wanted to listen to them.
Patrick was out in hall with Mick, lying on the floor screaming hysterically for me to come to him, as he kicked and headbutted Mick’s legs. We continued with the songs, but they could not drown out the screams. Erin didn’t have the words to show how upset she was, but it was clear in her eyes.
It may seem callous that I didn’t go to Patrick straight away, but there are some times, when we just have to choose to prioritise Saoirse or Erin, as much as Patrick needed me that night, so did Erin and they need to feel like they matter too, as so often they can be left feeling like they don’t.
Mick and I with the help of my parents, work exceptionally hard to give time to each of our children, but sometimes the most important time isn’t what you have ‘scheduled’ but it is being there for them in the here and now, both physically and emotionally.
When you live with a child that presents with the challenging behaviours that Patrick does, he is your priority, because you are stopping him causing harm to himself, others or our home. Every child in the world is told, “can you just give me five minutes” but in reality, our girls need to give us up for so much longer and they wait endlessly.
Patrick, needs what is known as ‘continuous engagement’, it means exactly what it says on the tin. He needs our attention all the time and will do whatever it takes to get it, he simply cannot help it. This is not naughtiness, or not as some people tell us ‘being spoilt’. It’s as necessary to him in coping, as physio may be to a child with a physical disability.
Again, this isn’t your typical ‘bad’ behaviour, this is a physiological need that must be fulfilled. We try so hard to explain this to our daughters, they listen, they understand and they respect Patrick’s needs but to be fair they need us too.
All kids will grapple for attention from their parents. Saoirse and Erin are so patient and understanding, but it is clear to see they are weary from the fact that this is a fight they know they will never win. But they accept it.
That is why I am so glad that the ‘Late Late Toy Show’, focused their attention on the beautiful Sophie. Celebrating who she is, what is interesting to her, reminding her that she does matter so much.
She and so many children in situations like hers or ours, matter so very much to their parents. Just sometimes, due to circumstances beyond their control, parents give so much more of their time and attention to one of their other children. It is rarely discussed, but that is equally as heart breaking to that parent as seeing the pain their child with the condition faces.
So, let’s celebrate the siblings, lets raise the roof for what they do every single day. They give patience and love and acceptance on so many levels, recognising the importance of this.
Ryan told Sophie on the show, “you are magic”, holding back tears I lent over to my eldest daughter Saoirse telling her “we think you are magic too”. Because being a sibling to a child with any kind of different needs, in fact is a super power. Because isn’t it super to have the power of patience, the power of love and the power of compassion to meet the needs of your sibling. The power of ACCEPTANCE.