Recently I was trying to explain to a friend who I’d not seen in years about Josh and the fact he is autistic. I find it quite a difficult condition to try and articulate to people.
I didn’t know a thing about autism until it became apparent it was going to be a huge part of our lives. And many other people don’t understand it either. It’s such a vast condition, so individual to each person it affects, that it can be difficult to explain. But I wanted to try and give a bit of an insight into just what day to day life has become now that Autism is part of our world. Autism isn’t always what it seems.
As a Mum you are constantly learning. As a Mum to a child with special needs, that learning curve ramps up a few gears. You are on constant high alert, ready to go into crisis mode when the shit hits the fan and it is an emotional roller coaster. Days are extreme, high or low; there isn’t often any middle ground. A day is either a shit storm of stress and emotions or it is full of love, laughter, affection and pride.
You have to differentiate between your head and your heart sometimes. Your head will remind you there is a reason why you still have to help your child eat his dinner, why he’s still in nappies, why you have to ask him 15 times to come back to the dinner table, why he can’t tell me why me taking his shoes off has sent him into utter turmoil. You sometimes have to wait until its the end of the day, your babies are tucked up in bed, the chaos has stopped and then you can allow yourself to deal with whats in your heart. The feeling of “sometimes this simply isn’t fair”. Because it is OK to say that sometimes. It isn’t fair but it’s the hand you’ve been dealt and you have to learn to accept that.
Your heart will also take affect with valuing every moment of your other children. It has dawned on me of late that many of Holly and Josh’s firsts will coincide. The fact that Holly is 13 months old and has said Mama many more times than my beautiful Josh has (he’s only ever said it once) is both a gift and heartbreaking. My hope is that she will teach him so many things in life. She will be a proud sister to her unique brother. And I will be exceptionally proud of her and Josh, especially in watching their development.
In our house, things aren’t just a phase. This is our life.
For Josh, milestones are out the window. Every email newsletter I signed up for whilst pregnant with Josh has been unsubscribed. We don’t live by “at this age you should be doing this”. We live by hope and the realisation that with us all doing our best, one day he will get there, and what a beautiful achievement that will be.
We don’t get to do some of the typical stuff; dropping Josh off at nursery this morning on World Book Day, there was no way we could have dressed him up. Instead he went into nursery proudly clinging on to the biggest cuddly toy Twirlywoo you’ve ever seen. You adapt; you accept you can’t do some of the regular stuff and instead you find a way to make a day special for your child so that it doesn’t overwhelm him.
Hand in hand with that you learn to accept their way of doing things. At Christmas Josh didn’t join his cousins looking for presents from Father Christmas. He wanted to be upstairs, playing in his room with just me or his Dad. I felt so sad that he was missing out. My husband pointed out the importance though; he was happy doing what he wanted so let him be. You learn not to rock the boat.
You learn to bite your lip. To the people at the place you’ve braved going to for lunch (a military operation in itself) eyeballing your child who is merrily making noises that you know means he is happy but to them is putting them off their lunch, to the parents offering “advice” because their child would never do that (that’s because they’re not autistic……), to the friends excitedly planning trips abroad for their first family holiday and you’re stood there smiling but inwardly wondering if you’ll ever even take a flight again (and throw in the guilt there because sometimes you long to get on a flight away from it all ). There is a lot of putting a face on in this autistic parenting malarkey.
You embrace the unknown. As I’ve said before, the unpredictability of everything is a huge factor in our lives. But you can either stay in the safety of the house all day (which is actually no good for any of us) or you can take a risk, go out and brave face it. Some days you’ll be pleasantly surprised; things will go smoothly. Other days might be a shit storm. But how will you ever know if you don’t try.
The things you become envious of are not something you would have ever expected. I long for the day I can take Josh to Costa for a babycinno.
There is nothing quite like the heartache of watching Josh in full force meltdown mode. When other parents say their kids have had a meltdown they usually mean a hideous tantrum in the supermarket, which I truly realise is horrible enough to have to deal with. When Josh is in meltdown, the fear in his eyes, the lack of understanding that he mustn’t hurt himself, the state he gets into where he begins to retch, breaks my heart every single time. He doesn’t allow me to comfort him. I literally have to crouch down near him, talk quietly and watch my child go through these hellish emotions until he realises Mummy is here and he collapses in my arms, exhausted, for a cuddle. That is very painful for a Mother.
I don’t always have my shit together. Parenthood is survival at the best of times. Life isn’t what it appears on Instagram. Some days it is potato waffles, Hey Duggee and bribery in the form of pom bears.
There are so many unknowns. Will he speak properly, will he be OK at school, where will he go to school, what will be his thing to excel in, will he get to go to uni. My way of dealing with that is simply take everything a day at the time. I can’t look too far into the future because there are so many unknowns, and that’s another thing you have to learn to accept and be OK with.
You learn to see the world through their eyes. Never underestimate the beauty of a white feather (even if you do have to stop to pick one up approximately 17 times when you walk to the park).
Sometimes people say ridiculous shit. Vaccinations are linked to autism….. (No they are not – that’s been fundamentally proven and the doctor who made that statement was struck off before admitting himself that he was incorrect), I wonder if it’s anything you did or didn’t do in pregnancy, does it come from you or his Dad. People don’t mean to say stupid stuff (apart from the vaccination comment which is so stupid it kills me), it’s part of the fact that most people don’t know about Autism and just listen to speculation that some doughnut has written on Daily Mail.
I’m not afraid to admit, some days I completely fall apart. The energy it takes to be strong all the time, deal with the aggression, the meltdowns, the constant guessing; I am only human and it can take a great deal of strength to go on and on, day after day. I’d rather cry and let it all out now and then than bottle it up. Because then I’d be no good to anyone.
You never underestimate peoples kindness. Yes, some people stare when we’re out and wonder what on earth Josh is making all that noise for, or they watch with unashamed interest as he has a tantrum and I’m there trying to wrestle this super strong toddler whilst trying to stop his sisters pram escaping. But more importantly, some people say nothing but offer that kind, reassuring smile that says “you’re doing ok” and that outweighs every negative comment or glance.
I have got this. I don’t always feel it. More often than not I feel lost, overwhelmed, emotionally drained. But I am the right Mum for this job. I’m so good I didn’t even have to have an interview – they gave me the job on the spot.