Parenting. It’s a tricky business, no? Just when you think you’ve got it sorted, a new challenge appears and throws you off balance. Raising tiny humans to be intelligent, compassionate, thoughtful, tenacious, brave adults is not a job for the faint-hearted. But, throw additional needs into the mix, and it’s a whole new ball game! As well as all the usual challenges and fun parts of child-rearing, you now need to factor in dealing with professionals, hospital appointments and admissions, learning difficulties, school choices, judgement, learning a whole new vocabulary, and second-guessing yourself at every turn. In short, raising a child with additional needs is Parenting Plus!
As the mother of a child on the autism spectrum, it wasn’t immediately obvious Tink had additional needs, unlike some conditions and disorders. Once you’re given that diagnosis, it can feel like being a new parent all over again. Just like when you were pregnant and reading ‘What to Expect When You’re Expecting’ – or online versions of the same sort of thing, you’ll want to learn all about the new world you’ve just landed in. But, it’s easy to become overwhelmed, so I’ve put together a few dos and don’ts of parenting a child on the spectrum.
The Dos and Don’ts of Parenting a Child on the Spectrum
DO: Read and research. As I mentioned, you’ve just been told your child has autism and this may or may not mean anything to you. You’ll want to do some research so that you have at least a vague idea of what you’re dealing with. There are loads of books, websites, Facebook groups and pages absolutely jam-packed with information, anecdotes and resources.
DON’T: Get overwhelmed! The trouble with the internet is that it’s pretty limitless. There’s a heck of a lot of info out there – and it’s not all accurate or even remotely true. You need to be careful! Start off with some of the more trusted websites for organisations in your own country and have a mooch around the Facebook groups and pages and get a feel for them before you post yourself. I can wholly recommend this group, however, which has a lovely mix of parents and teachers working together to help each other understand their children/students better.
DO: Ask for help. We all need a hand every now and again, and autism parents often try to struggle through alone, for a number of reasons. For one thing, it can be difficult for others outside of the immediate family to understand your child’s needs and behaviours, and to explain over and over again is draining. Another reason we don’t ask for help is the fear of admitting failure. Which is ridiculous, when you think about it. We are petrified that something terrible will happen if we’re seen to be struggling. Here’s a secret… No-one will think any worse of you if you need to ask for help. If it gives you the break you need to refresh and and be better equipped for the job of parenting, then go for it!
DON’T: Forget to take care of yourself. You can’t pour from an empty cup, as the saying goes, so it’s crucial you look after yourself too, or else you risk burning out. See the point above and ask for help; it could be child care, financial, someone to do your cleaning – whatever. Give yourself time and permission to take a break and carry out some self-care. There are some more ideas in this post.
DO: Make plans. It’s not something anyone ever wants to think about, but who will be there for your child if you can’t be in the future? Are they likely to be able to live a totally independent life, or will they need someone to look out for them? Perhaps they’ll even need full-time care. How will this be provided financially if they aren’t able to work and support themselves? These are awful things to have to consider, but it’s prudent to make plans sooner rather than later, as none of us knows what the future holds. There are organisations who can advise on this kind of future planning – more details here.
DON’T: Make plans. I know, right? I just told you that you need to make plans, and now I’m telling you not to. This time, I’m talking more short-term. Autism is predictably unpredictable and, as such, plans can often go flying out of the window at the last minute. Sometimes it’s better not to make plans and just go with the flow to avoid disappointment and meltdowns all round!
DO: Find your tribe. As I’ve already mentioned, special needs parenting is a
slightly very different experience to parenting typical children. Although you don’t want to lose friends, sometimes this does happen as a result of you having to put the needs of your family first. Or people just being arseholes. But, there will be more people out there for you, who understand what you’re going through, who get it. Grab these people and hold them close (not literally, they’ll think you’re a bit weird!) – they are your tribe now. They may be real life people, or they may live in your computer – doesn’t matter.
DON’T: Cut yourself off or cut people out because their life is not like yours now. Yes, it hurts to see families doing ‘normal’ family stuff like meals and days out, holidays and parties when you feel as though you’re winning if you make it out of your PJs by lunchtime or your kid eats a bite of new food. But try not to hold it against other people for living their life the way they do. Instead, encourage them to learn more about you and your way of life, including the difficulties. It might just make them think a little about your different situations and give them a new perspective. Education encourages acceptance!
DO: Choose your battles. If you know me, or follow my blog or Facebook Page, you’ll know that this is one of my favourite sayings! We have this hang up about being seen to be doing everything the ‘right’ way. But, what we often don’t realise is that the ‘right’ way is whatever works for you. If your child doesn’t want to wear a coat because it feels scratchy or too tight, or too warm or all of these, let them go without until you can work out a better solution. Who cares if the old lady down the road tuts at you as you walk past? Not her circus, not her monkeys! If it makes her happy, put a coat on your child and let her deal with the ensuing meltdown…
DON’T: Sweat the small stuff. This is really just another way of repeating the point above, as I just can’t stress it enough. I used to cringe in a restaurant if Tink had her ipad on the table, worrying about what other people thought of me as a mum. Then I grew a thick skin and a ‘don’t give a rat’s ass’ attitude. I know that if Tink has her ipad she’s much more likely to eat, eat in relative peace, and sit still for the duration, which, believe me, makes for a much more pleasant experience for everyone in the restaurant!
DO: Talk to your partner. It’s easy to forget about each other when pretty much all of the focus is on the kids. Remember that (if there are two of you at home) you’re a partnership and need to share the caring, as well as the housework! If you are the main carer, it can be easy to assume that your partner doesn’t have an opinion, or doesn’t care as much and this is most likely not the case! Talk to each other regularly to make sure you’re in agreement about the big stuff. Not having open communication can lead to resentment.
DON’T: Forget to live! When your child has special needs, it’s natural to put most of your focus on them and making sure life runs as smoothly as possible. Just don’t forget that this is your life too! Make sure you find time to enjoy your hobbies, go out with your partner and friends, and generally be YOU again – even for a little while. Be with people who call you by your actual first name, and not your assumed first name, “Mum”.
DO: Celebrate every victory. No matter how small it might seem to outsiders, even the tiniest new thing is a huge victory to your child and you. They tried a bite of broccoli? Celebrate! Said a new word? Woohoo! Took you by the hand to show you they wanted a biscuit? Amazing!
DON’T: Get hung up on the ‘can’t dos’. Just because your child can’t do something now, doesn’t mean they never will. Just because they aren’t doing what Ben next door is doing, doesn’t mean they won’t get there in their own time. Focusing on what your child isn’t able to do should be left for filling in the DLA forms (goodness knows it’s hard enough to think about it then!). It’s not helpful to you or them. Instead, focus on all the things they are good at, or do well, no matter how small or insignificant it may seem to others. Write them down, make a photo book or a video and share it with them!
I hope this list of dos and don’ts of parenting a child on the spectrum has given you some things to think about? What would you add? Let me know in the comments.