Unless you are parenting a child who has autism, the brutal truth is, it’s pretty much impossible to get it. And that’s a harsh reality for you and for me because sometimes it can feel very lonely.
We are surrounded by incredible friends and family who go out of their way to support us, remind Sam and I that we’re doing a great job and to accommodate Josh in circumstances such as us going to visit. We are beyond lucky. Just because our loved ones don’t always get it (and by that, I mean raising a child who is autistic) it doesn’t mean they don’t care, or support us whole-heartedly. And me saying people don’t get it is by no means an attack on them. It’s just a very very difficult thing to understand sometimes.
For instance, Sam had spoken to a work colleague about one of Josh’s meltdowns, describing the tantrum and tears. “But isn’t that any toddler” responded his colleague. And from how we talk about Josh’s meltdowns at times, yes it does sound like any other toddler. But what his colleague didn’t get is that Josh will have had that meltdown for reasons that are probably even beyond Sam and I, and we’re the people who know him best. We’ve had to learn quickly to understand what it is that can set Josh off. A good example is that if we go for a walk we always make sure it’s somewhere that has a circular, loop like walk. Because if we walk somewhere and get to a point where we have to turn back on ourselves and walk the way we’ve just come, that will set Josh off. And trust me there have been some monumental meltdowns in this sort of instance. It can be any number of random things such as this through to having absolutely no understanding why he can’t have another childs pom bears that can kick start a meltdown. We can attempt to explain things until we’re blue in the face sometimes but the sad truth is he just doesn’t understand; his brain isn’t wired to compute the explanations we’re giving him just yet. For him it’s his way or no way; everything is on his agenda.
Of course, as any parent will vouch for, you get a lot of unasked for advice or uninvited comments. I’ve had them all from “he just needs a bloody good telling off” to a blunt “what’s wrong with him”. Bear in mind these are from total strangers, people who have walked past me in a park and rather than offering a hand with the baby whilst I deal with a toddler who is losing his shit and rolling in mud, feel it is far more necessary they impart their “wisdom”. And of course, being a blogger and an avid user of Instagram and Instagram stories, you are setting yourself up for other people to give you their two pennies worth.
I knew when I started blogging that was part and parcel. And I’ve developed quite a thick skin. But sometimes when you get you comments from people who have noticed you allow your child to have their Kindle whilst they eat dinner or that you’re letting your toddler watch Hey Duggee again, rather than be irritated by it I simply think “if only you knew”. They don’t understand that if I didn’t let Josh sit with his Kindle whilst eating he wouldn’t eat! That is how an autistic childs head works. One thing we’ve learnt with Josh and eating is that we have to allow some freedom. I let him have his lunch in the lounge, not because I’m a lazy parent or because I don’t have any pride in our house but because I’ve learnt that Josh can sometimes take up to two hours to eat a plate of food, particularly finger food. If he’s relaxed and at ease he’ll pick his way through it and will eventually eat the whole lot. This is a big win, to have him clear a plate of food.
And yes, some evenings when he has dinner (which he does have in the dining room and usually with his sister) I do allow him to have his tablet. Not because I’m lazy or because I have no interest in engaging with him but because it keeps him settled and he will then happily let me feed him a bowl of food that is a decent, healthy and filling meal. If I didn’t let him have it and he kicked off, I’d have no chance of getting him to eat anything even once I’ve calmed him. And one of the things Josh, and many other autistic children, don’t understand is that they need to eat. Before I knew what was wrong with Josh, if he was refusing yet another meal or not eating again, I’d do the whole “you’re not getting anything else then” routine. I’ve since been advised by paediatricians that Josh simply won’t have this understanding – if he doesn’t like something and I don’t offer anything else he will go hungry and not realise that he has to eat. So now if he refuses something I have made I give him a second choice of something I know he will always eat (Spaghetti Bolognaise, Tuna Pasta, Toast are all fail safes). It’s not just me being a soft touch but me ensuring my little boy doesn’t starve because he doesn’t understand the feeling of hunger.
Of course I try to explain such circumstances to people but I’ve learnt I don’t need to justify myself to every single person we see. I like to explain to our family and friends by way of helping them understand why we do things a certain way with Josh. I have to try and let go of my paranoia that people think behind our backs “oh they let him have the Kindle, oh they don’t encourage him to sit up with the other children” because that is very much something that is my issue and not something our loved ones have ever implied. It’s an insecurity that is silly and one I need to let go of.
The truth is, some days with Josh are just about survival. I’ve learnt the routines to follow, the places to go, the safe items to have with me in case he becomes distressed. Because being a Mum to a child with autism and the sort of complex needs that come with is not easy. The unease you feel going to a new place, the stir of nerves in your tummy when you spot another Mum looking at your child at the soft play place it’s taken you days to drum up the courage to try taking him to, and who is probably wondering why he’s squealing and screaming rather than sweetly asking Mummy for a drink. Being a Mum to a child like Josh stirs up so many different emotions; frustration, fear for the future, feeling massively overwhelmed, and then the strongest sense of pride when they take you by surprise and start singing Twinkle Twinkle Little Star at a friends birthday party. It is a rollercoaster. Sometimes I feel lost, like I have no clue what I’m doing and other times I think “we’ve got this” and our little family gang is winning as Josh has a good day.
So if I ever say to you “you probably don’t get it” it is not me being defensive or rude. It’s hard to even explain “it” even through my beloved writing. But unless you live and breath it every day as an autism parent it can be difficult to understand. But to those who do try to understand, our wonderful family and friends, you all have no idea how much your kindness and efforts mean to us. We are so lucky to be surrounded by so many wonderful, open minded people who go out of their way to help us.
You may not get the horrendous vomit inducing meltdowns, the aggressive outbursts (it’s quite something when you feel like you’re being beaten up by a near 3 year old!) or the sheer panic that engulfs us if we don’t have a blue toy and a woo (or a comforter to all you normal folk) with us. But that’s OK. Because you love Josh and us anyway. And for that I am forever in your debt.