Kelly, mother of an autistic six year old daughter, offers these tips to any parent who is finding their way along the journey with a child diagnosed as having a condition 'on the spectrum'.
I wouldn't dream of telling other parents how to bring up their children. And as the parent of an autistic girl of six, I am more than sensitive about the advice I get from well-meaning parents; people I know well and trust as well as complete strangers in the street. That being said, I offer these tips to any parent who is finding their way along the journey with a child diagnosed as having a condition 'on the spectrum'.
It's often said that children on the spectrum appear to be 'in their own world'. The best way to reach them is to invite yourself in - gently! Try sitting with your child while they play. Copy what they do. They pick up a toy and shake it - you pick up a toy and shake it. They roll on the floor - you roll on the floor!
Eventually, you might notice that they've noticed. They might start making more meaningful efforts to communicate; they might do something while keeping one eye on you to see your reaction. Or they might wait for you to do something and then copy you. This is a lovely way to communicate with non-verbal children in particular.
If your children are verbal and more engaged, show an interest in their interests. Even if you're not interested! They'll appreciate the effort and you never know, you might find it's something you enjoy!
Your child isn't sick. Your child can't be 'cured' autism. Yes, you may explore various therapies, medications and diets to try to lessen the more severe symptoms - that's up to you. But, please know that this is still your child - the same child you loved before the diagnosis. There's nothing 'wrong' with them - their brain is just wired differently. Some people liken it to using a different operating system! Acceptance of this will go a long way to helping you all.
As a parent, we naturally compare our child to others - either our other children or those of friends, classmates or even just the kids we see in the soft play centre. Stop. Comparison is the thief of joy.
Your child is unique - as is every other child - and they will develop at their own pace in their own way. This is true for kids on the spectrum too. If you're always looking at the things they can't do (yet), you're probably missing the things they can - however small!
Now you have your child's diagnosis, the fight isn't over. Nowhere near over. Nope, it's just the beginning. Getting a diagnosis of autism is not a magic key. You will need plenty of energy for battling for access to services, funding and benefits, the local education authority and who knows what else.
Don't waste any time on things that are, in the grand scheme of things, unimportant. So your 'friend' has stopped calling and avoids you at the school gate since the diagnosis? Their loss! It hurts, yes, but try not to let it get you down. You'll be ok (see point 7!)
This is one of my favourite mantras! I repeat it to myself often. Along with not sweating the small stuff, you'll find life is smoother if you choose your battles. Know when something needs to be addressed or whether it really doesn't matter in the grand scheme of things. Your kid likes to be naked in the house? Is it hurting anyone? Then let it be.
If he wants to be naked out in public, you might want to put some boundaries in place! It can feel as though you're being lenient or 'soft' sometimes, but I have come to learn that a quiet life is a happy life. If we can avoid the tantrums and meltdowns it makes it more pleasant for everyone!
Being a parent is tough. Being a parent of a child with additional needs is tougher. You will have to make decisions you don't want to think about. You will have to consider eventualities that no parent should need to think about. You will have to advocate for your child - maybe even when they're an adult and you need to be ever-present.
Literally, in some cases, thanks to a lack of danger awareness, or lack of continence, or the presence of co-morbid conditions that mean living a healthy, independent life is an all-but non-existent possibility.
It's imperative that you find some time for you. Time to recharge your batteries, ready for the next sleepless night, or the next round of meetings with the local authority, or the next spell in hospital while your child's seizures are investigated.
Yes, you are your child's parent, but you are also a person in your own right, and you need to hold on to that. If you can get a holiday or short break - amazing! Maybe even just a night on your own. Or even a few hours in the day while they're at school. Hell, even a trip to the loo alone is like 'me-time' at the moment, and I make the most of it! I have some more ideas here.
This is possibly the most important of all. No matter how strong you think you are, you cannot do this alone. You will need support, a shoulder to cry on, a friend to cheer with when the victories come.
It could be your amazing family, or perhaps you have great, reliable friends who will drop everything and come running when you need them. Maybe you go to a support group, full of other parents just like you, all paddling in the same boat together. Or, maybe you can make some fantastic friends online. There are so many groups on social media, you can find one that fits you and feels like your people. Wherever you find your tribe, hold on to them and treasure them.