There Is No Better Education In Love, Compassion And Empathy Than Having A Child With Special Needs

A few weeks ago we went to a fundraiser. It was a black tie event to raise money for the family of an old colleague of the old man’s whose son broke his neck and damaged his spinal cord in a freak rugby accident recently.

Alex Noble is their son’s name, and if anyone feels like funding a real cause, as opposed to other, less noble causes, please feel free – here is the link to his GoFundMe page.

At one point in the evening, Alex’s parents stood up on stage to tell us a little about his story, his progress, and their plans for the future – should they reach their target that night to secure the funds they need to renovate their house, meaning he can eventually come home.

“There’s not a lot of joy in my life right now, but there’s a lot of love,’ his mother said.

It was a comment that hit me hard, because albeit that in terms of bums on seats that night, there was a wonderful level of support in the room, as a mum who is also a part-time carer of an adult dependent, (as well as being a professional cynic), I did wonder how many guests would be there for the long-haul of Alex’s journey, once the glitter is swept away.

Many of the guests were close friends of the couple or friends of their son, so in some ways it felt almost voyeuristic to be there, to witness the pain and rawness caused by such a cruel twist of fate; to sense the fears that his family feel in terms of the uncertainty of Alex’s and their future.

When we plan our children, we never anticipate for one moment that things won’t work out like the parenting manuals told us they will, so I understand what Alex’s Mum was trying to say. I’ve felt that way many times with Kurt – because let’s not underestimate the devastation caused by mental illness or disability, either. Indeed, it was only a week before that I thought that we had lost our son?

Scratch the surface and there is heartache in every family. I can’t tell you the number of times people open up to me about siblings or relatives with mental health issues who have been hidden, the skeletons in their cupboards.

But Alex’s Mum was right about how adversity cultivates love. Because in return for the pain caused by our son’s neuro-diversity, we have been given an education in love, compassion and empathy, and we are better people for that. We are as proud of him as we are of NC – much to her horror. While his steps forward have been slower, they have been celebrated with the same enthusiasm as hers, and his progress has provided us with an invaluable insight into how society should be measuring success.

Admittedly, there have been times when there’s not been a lot of joy in caring for someone who may never get better, and I wouldn’t wish our experience or that of Alex and his parents on anyone. Before his accident, they would have been looking forward to the last chapter of their lives as independent once again, but the ramifications of his physical disability may be lifelong, and they will affect not only them, but his siblings, and possibly future generations of their family.

I’m glad that they feel loved and supported. I hate cliches, but shit like this does make you stronger, because you have no choice but to be strong. But as I said, there are hidden benefits to life’s knocks such as this. While they will have to reset their expectations of Alex, his milestones will be as meaningful as those of his siblings – if not more so. And though it may feel painful at the time, this tragedy will draw a line in the sand between their true friends and their fair weather friends, because they won’t have time for games.

But they will be tired all of the time and there will be days when they feel like they can’t go on and will question why me? So I suppose what I really want to say to all those parents battling through each day with kids with disabilities or dependencies, is that your joy may well be diminished, but like a flower in summer, your heart will be opened to maximum capacity.

Empty-Nesting: You Know When It Is Time…

Photo by Mantas Hesthaven on Unsplash

The old man and I became empty-nesters this week. Kurt has left the building.

I swear he wasn’t pushed. We view our negotiations as closer to a manipulation that made sense – primarily, for him. Not once did we bring up the subject of our sanity in the conversation.

Anyone who has twenty-something-year-old kids still living at home will know that there comes a time. A time when the kids need their space to grow, go wild and make their own mistakes. A time when you need your sleep.

It’s one thing to offer them a roof over their head while they are studying – to improve their career chances – but it’s another to sacrifice your peace when they are in the workforce, with far more disposable income than you’ve had in a very long time, and living the rowdy lifestyle that goes with it.

We have tried to make living together work over the past year – honestly! In some ways, Kurt has tried harder than us, and yet no amount of nagging will make the twenty-one-year-old brain of our son think along the same lines as our fifty-something-year-old brains.

Particularly, an ADHD brain – which I can vouch for because I was that kid that smoked the butts of cigarettes at five in the morning, hitch-hiked across Europe, and strolling into work straight from nightclubs. Needless to say, “the crazy” hasn’t fallen far from the tree in our house.

Fortunately for my father, my period of existentialism happened away from home, with no one to nag me about noise, how often I ate, or the dreaded R-word (responsibility) every five minutes, like a stuck record.

I swear that the word will always be a trigger in Kurt’s life.

I have no idea how long this amazing strike for independence will last. Forever, I hope – for his sake – even though my heart physically hurts when I think about my loss. For all his noise, for all those visits to the police station and suspensions from school, I will miss our boy.

Like any child, he has made an indelible mark on my heart. But in his case I have shared his struggles so viscerally – struggles that have mirrored mine many times – so his departure almost feels as though a part of me is leaving with him.

But this decision is not about me.

When our daughter left, I knew that she was ready. Kurt’s departure is different – he needs to go. For him, for us; perhaps most importantly, for the future of our relationship with him.

I would be proud to say that raising my son has made me a better person, and yet I’ve never pretended to be that “perfect,” selfless stereotype of the mum of the kid with special needs who rose to the challenge. Our journey has been a tough one, and there have been times when I have resented his “different” dynamic in what should have been an ordinary life. ADHD is not an easy condition to live with – for neither the sufferer nor the carer – and it can have a devastating impact on close relationships.

But what I will say is that my son’s presence in my life has made me more conscious of “difference,” and the difficulties of those people that have a “different” brain, who struggle in a society not customized to their needs, that continues to deny their disabilities, and to fall by the wayside. Being Kurt’s mother has made me less discriminatory and an advocate for people like him – work that I am proud of.

Am I more patient? No. But then, this stage of my life is probably not the best time to be judged by my patience levels.

Our boy has only moved up the road, which means that he can pop back, anytime – which he did last night at 1.30am, in search of a clean towel – and we can reach his new unit within five minutes if he needs us. Nevertheless, the three of us know that we need this time. We need time to heal, time to forget the scarring judgments spoken in anger, to repair, and to breathe freely again. We need time apart to remind ourselves of how much we love each other. The old man and I have more than twenty years of sleep to catch up on.

A year ago, I would never have believed that this day would come. A year ago, it felt like a fantasy to think that one day Kurt would hold down a job. A year ago, we feared for our son’s life, or that he might remain fully dependent upon us for the rest of ours.

In those darkest moments, hope and survival are sometimes the only things to hold onto, and one of life’s greatest gifts is the element of surprise. Always remember the healing power of time and its ability to scaffold forgiveness, change circumstances, and people. We are so proud of where Kurt is right now.

Friends, whose kids have already left the family home, have assured me that their relationships with their kids improved once they decamped. And while my relationship with Kurt has always been complicated – intense, symbiotic, and unhealthily enabling at times – I know that deep down both of us need this move to work. Little has remained left unsaid in our relationship. We know each other inside out – for better or for worse – so we know what we mean to each other.

Nevertheless, it is time for our chick to fly.