Keep on climbing.


These are the moments:

I love the song The Climb, I’ve written about it before. I love to turn it up loud when it comes on in the car and belt it out while driving and feel like I’m leaving my cares behind.

Recently, while listening to it on the radio and singing it out at the top of my lungs, accompanied by Megs in a duet, I got to the line “I may not know it, but these are the moments I’m gonna remember most, I gotta keep going.”

In that moment in my head I screamed “Oh please, I hope not.”

That might seem harsh. Don’t get me wrong, I love singing in the car with Meg. It’s one of my favourite things to do and actually those are the moments I do want to remember most. The tough moments I want to disappear are those moments leading up to that sing-a-long consisting of meltdowns from both children, a last moment mad search for a watch that Eli refused to leave the house without but only started looking for 5 minutes before we left. Crying because watch couldn’t be found and then more delays trying to put on watch when it had been found. Lunches forgotten, P.E. kits misplaced, pantomime scripts vanishing into thin air. Then the arguing over radio stations, trying to out noise each other, kicking my chair, telling me the world’s unfair.

All this while my hand are swollen, my eyes burn, my knee is tight from where the arthritis is rumbling. My stomach is growling because having time to make myself breakfast after Elijah’s three rounds of breakfast and Megan’s two was never going to happen. Yet another crisis already breaks out as we forgot to pack the new trainers instead of the old ones, or one child has a confidence crisis or meg has a pda panic.

Yes I get through it and yes my morning looks like every other mother’s morning but, these are not my moments. I do not enjoy this bit of parenting. It doesn’t make me stronger or better or wiser. It makes me stressed and sore and guilty that I’m not doing it better, why can’t I do it better?

My kids and life in general give me so many moments and the hard ones do shape and strengthen our character but they don’t define who we are.

Since June I’ve been living with the reality of having a house hold where I am the one who is ’different’.

Obviously a diagnosis hasn’t changed who my husband or kids are. They have always been who they are and we simply can now access services and resources that make their world a little easier, until the world itself learns to fully accept diversity.

Their diagnosis do change me. I’m constantly learning, researching and studying how can I make their worlds better. I deal with the judgement and looks when out in public. I accept the loss of friends when my kids or husband appear rude. I silence the urge to scream when they refuse to engage with people I spend time with.

You see I adore my family, I would fight to the death for them but that doesn’t mean that there aren’t hard moments. These are not the moments I want to remember most.

There are so many moments when I am the outsider. So I have to live my life misunderstood and often screaming in the inside (sometimes on the outside – at Ben). Where other households think logically and work within the confines of social norms taught to us our whole lives, my household doesn’t play by those rules. And while I fully believe the world needs to constantly be learning, changing and diversifying, I also accept how hard it is to change your way of thinking.

Maybe I find it so compelling to learn and fight for my kids because I live, in my home, the life they live outside of it.

The reality of living around ASD, depression, anxiety, PDA and ADHD is that it’s painfully lonely.

People pick at our lives, they don’t understand us so they exclude or laugh at us. They justify that behaviour by thinking that they’re doing the world some great justice by keeping people who are different just on the edges of society, never quite included.

It’s easier to push people who are difficult away. People who take time to get to know, who don’t play the normal social games and who can be different from one day to the next aren’t easy people to be friends with.

I never know how an outing will pan out for us. It’s unusual to have an easy day out where none of the three struggle. Often one meltdown sets off a meltdown in the other. Soon I can have three miserable people in a car, crying, shouting or complaining and too often I find myself wondering why I bothered to attempt an outing at all.

When life throws up challenges, as it so often does, rallying together doesn’t look the same for us. Often if someone is unwell or routine is out the window for hospital appointments or visits or even simply for birthdays or mother’s day etc, instead of rallying round, ASD raises its’ head and the pressure of knowing that conforming to social rules becomes too much. When an event is coming close, it’s regular for all three in our house to back away, to retreat to whatever is their safe space (at the min it’s computer games for all three) and I’m left standing on my own dealing with meltdowns on mother’s day. Or the birthday we’ve worked so hard to make perfect becomes one massive meltdown because of the overwhelming surge of emotion that’s just too hard to process. Or when I’ve had just a horrible day and the pressure of feeling that it might be down to them to fix things becomes too much so instead of holding me close, I’m pushed away. I understand these things, I know the whys and the hows, but it doesn’t make the reality any easier.

Now I know this sounds depressing, where am I really going with this?

The moments that I do want to remember…
The moments that make me want to fight for our little unit of 4. The reason I am always in their corner and how I know they’re in mine. It’s when we laugh and we joke and there are things that only we can understand. When we have a connection with another family who get us. When we make those friends who see past the struggles and love all of us the same.

Everyone has their battles; normal is totally just a setting on the washing machine. My moments, good and bad, have made me realise that. They’ve also made me aware of other people’s moments: to try and be tuned into what moment and what season they are in. To reach out to others, regardless of my own crazy life, and make sure that others aren’t drowning. There are people who I love dearly who have turned a drowning moment for me into a memorable moment with a text or a card or a simple hello.

Help give those you love the moments they’ll remember most.

Comments are closed.


There are no comments yet.