There is no denying that living with autism can be really hard at times. It’s frustrating and lonely sometimes but it’s also magical and amazing too. Here, to balance the points I made in 9 reasons why living with autism is hard, I want to share with you a few aspects of autism that make our journey wonderful.
Constant awe and wonder moments
Can you remember the intense pride and excitement that surged through you when your child said their first word? Took their first steps? Wore their first school uniform? The feeling that floods from your toes, lights your eyes up and creates a smile that would make the Cheshire Cat look miserable? Those moments pass so quickly as your baby grows. With my eternal boy, he is always mastering a new skill – putting his own socks on, packing his own school bag (with instructions from me of course), pouring himself some juice (granted it was neat cordial but it’s a start). He is always speaking a new word even though on occasion it’s been a swear word. I need to control my road rage when he’s in the car! Ooops. Whereas typical children make steady progress in learning and mastering the life they are growing into, special needs children plateau before a ‘spike’ of progress. You never know when those moments are coming or what Harry will show me he’s been ‘working on’ in his own world next but our lives are peppered with moments that make me clap and squeal like a demented seal lion.
Intense love and protectiveness
The love we feel for our children is different to any other kind of love we ever experience. Its more intense and permeates every part of who and what we are. Even in those moments when we don’t like our children very much (please say that’s not just me), we still love them and would protect them in a heartbeat. I can’t speak for everyone but for me, loving Harry; my eternal boy, with his additional needs and vulnerability that love is magnified. That same incredible sense of overwhelming responsibility that I felt when my boys were first born has lessened slightly with Oliver as I watch him make his own way in a world that is his for the taking. I know I can’t protect him from everything and I wouldn’t want to. He will learn valuable lessons which will shape his views and personality. Meanwhile, Harry is still as vulnerable as ever and I still have that overwhelming urge to protect him from a world which is quick to judge and often slow to understand. And I love that I still have that blanket of love to wrap him in and keep him safe. I am proud to be his protector and guardian. I am terrified of what will happen when I am not here anymore but I know that this fierce love will always be with him.
Excited about new things
Recently, I posted a picture of Harry on Instagram eating some egg on toast for breakfast. I explained how excited I was that he was eating something other than jam or honey on his daily toast. The community of loyal Harry fans double tapped in appreciation and I had some lovely comments of ‘well done Harry’. But another mum with an autistic child commented “On a fork too. Yeay!!” Who else gets excited about their 11-year-old feeding themselves with a fork? Not a ‘typical’ mum. But she saw it and she got it. Moments like this are just brilliant. And there are so many small wins to celebrate each day and yes, sometimes they get lost in between the challenges and frustrations but the fact that I know that every day holds the potential for an exciting new accomplishment is just brilliant. Incidentally, that post has to date had over 36,000 likes. Turns out I am not the only one who gets excited about egg on toast.
No back chat (winner!)
I underestimated the significance of this one until Harrys twin Brother, Oliver, hit puberty. I will say that generally he’s a brilliant boy. He’s not turned into ‘Kevin the Teenager’ just yet but there are moments when he pushes me. He’s testing my boundaries and answering back at times. My son is in transition to a young man and finding his feet in the world which means he’ll be treading on my toes from time to time. It’s inevitable and natural for Oliver and I’m bracing myself for the next few years. Meanwhile, Harry is still playing with his Thomas trains and generally fairly compliant. He doesn’t negotiate bed times or demand money for the latest game he’s playing on his ipad. He doesn’t tell me I’m unfair (I’m camp cruel-to-be-kind parenting) and he doesn’t badger me to upgrade my phone so that he can inherit mine! Autism is Harrys mute button and although that presents challenges of its own, no back chat is definitely a benefit!
Harry as no idea of what hate is or how it feels. He doesn’t understand the sadness of disappointment or the pain of grief. He doesn’t feel jealousy or loneliness (at least I hope he doesn’t). He doesn’t know the blind anger that can cloud a person’s judgement. I don’t know if he ever feels fear. He has no concept at all of how it feels to judge others or be judged. All of the toxic emotions that we can experience, he is spared. How amazing is that? My eternal boy only feels happiness, excitement and safety in abundance. Yes, he has his moments, his tantrums and frustrations at times but they leave him as fast as they arrived. My boy is the personification of pure love and that, is beyond amazing.
Ok so I have to say here that just because I laugh, does not mean I condone Harrys behaviour but the social boundaries that autistic children lack can at times be hilarious. I can be in the middle of a very stern word or two with Oliver and Harry will suddenly get a fit of the giggles and throw his head back in raucous laughter. It’s hard to stay mad in those moments. Maybe he’s secretly coming to his brothers aid but I doubt it.
On the rare occasion that I dare to brave a supermarket, Harry will either twist out of my grip or hurl himself over the trolley side and run like Usain Bolt to the electrical aisle. There, he will choose a remote control (‘mote’) telling me repeatedly “dis one, dis one” until I either put it back and then spend the next 10 minutes calming him down, or give in and buy it anyway. I laugh as I chase him, all the while hearing the crazy benny hill music in my head!
After we had spent his birthday voucher last year, he reached for a new Thomas train but I explained that there wasn’t enough money left for another toy. At that point, he grabbed my coat and said “pocket, pocket!” I don’t know if autistic children don’t understand the concept of shop lifting or simply don’t care but either way I laughed my head off (and put the train back! Chillax Toys R Us)
More recently as he stripped off for a visit to the toilet he also ripped his prosthetic ear off and threw it into his pile of clothes before he dashed off. Trousers? Off. Socks? Off. Top and Vest? Off. Ear. Off!
There is never a dull moment with Harry and I know he doesn’t ever mean to be funny. He’s just a natural!
Others fall in love with him
Harry really doesn’t give much back to the people who meet him. He doesn’t engage in conversation or particularly make a fuss of others. If anything, he tends to use people as tools to get him what he wants – a biscuit from the cupboard, an instrument to play for his entertainment. And yet, everyone who meets him falls in love with him. The nursery staff who cared for him when I returned to work years ago, still ask after him and love an update. My friend’s children love his company even though he’s not particularly arsed about theirs! His primary and secondary school staff all adore him and have made time to see him out of working hours too – just to get a ‘Harry fix’. My boy has a superpower that makes everyone fall in love with him. I find him incredible in a wonderful, confusing way but if living with autism is magical, then Harry’s ability to create an adoration in others beyond words, is the classic rabbit in the hat trick.
The people I have met because of him
Other parents who have been on similar journeys to us, and of course their amazing children who constantly show me the power and strength of a love beyond words. The teachers who have nurtured and guided my boy, now my friends and members of the unofficial harry fan club (with lifetime membership). The strangers who are brave enough to approach us and ask questions about Harry and his unique face – we are changing the world in those moments, one person at a time. The doctors and surgeons who are the architects of my boy’s face and try so very hard to create a better life for my boy. I have met so many incredible and inspirational people who make our lives and this world better just by being in it. I have also met some not so wonderful ones who I also appreciate. The trolls, keyboard warriors and the haters who, with their small minds and poisonous words just make me more grateful every day that my boy was born to me and not to someone like them. Thankful that I am his defender and voice. I’m in his corner and will always come out fighting for my boy. And the best part? I am never alone. Harry has an army and it’s a true saying that there is strength in numbers.
He has changed me
Wow this is a biggie. When Harry was born, people used to tell me that he must have been sent to me for a reason and that I was the best possible mummy for this baby. At that point, I would smile at them, all the while, imagining punching them in the throat! I didn’t want to be a special needs parent. I battled for a very long time with the fact that I was. Slowly over time my son has changed me. I am more tolerant now, more understanding, calmer, slower to judge, quicker to care. He took the broken pieces of the woman I was and created a mosaic mother. A mother that now wants to help other mothers at the ‘say that once more and I’ll punch you in the throat’ stage. A mother I didn’t know I could be. One that I am proud of. All thanks to my eternal boy and his autism.
Sometimes, in a quiet moment at the end of a tough day I wonder if I would change our lives if I could. If rubbing a magic lamp could grant me just one wish, whether I would use it to transform our lives into a non-autism version. I have to admit that sometimes I wrestle with that question longer than others but I always come back to the same answer. If Harry didn’t have his Goldenhar syndrome and autism then he simply wouldn’t be Harry and my life would be someone else’s. I think about all the things that make our journey together so incredible and I know for a fact that I just couldn’t change the life that chose us. Living with autism, living with Harry, is magical.
Incidentally, I would use that one wish for a lifetime supply of extra mature cheddar that made you thin. Now THAT’S a life changer!
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