The United Nations has previously declared April 2 as World Autism Awareness Day. In most parts of the world, the entire month of April is dedicated to recognising people with autism and those who love and support them.
As a parent of a child with Autism, I can tell you that it has been a roller coaster ride. Katie was officially diagnosed at 4 years old, but my husband and I already knew about it even before that. So we’ve done our research—read books, attended parenting programmes, enrolled Katie in therapy, and find ways to help her reach several milestones.
It’s still early days and I know we have a long way to go with Katie. Today I’d like to share with you some lessons I’ve learned these past few years as a parent of a child with Autism.
Acceptance
I think that the sooner we accepted Katie’s condition (even without the official diagnosis), the easier it was for us to start looking for ways to help her. In the beginning, I really struggled to understand and support Katie because I was trying to get her to say and do things that kids her age should be able to. I was trying to force her into the “milestones” that the books say she has to reach.
Then I just let it go. It was less stressful on my part, and Katie even reached some of those milestones without my intervention at all. Sure, she still has a lot to go in terms of talking and her behaviour, but I’m pretty sure she’ll get there – in her own time.
Now, more than ever, I am firm in my belief never to judge a person by their appearance and behaviour. We’re all different and have our own way of doing things. If you want to support a child on the spectrum, the first step is accept and value their difference from yours and what society expects as the “norm”.
Never take a milestone for granted
As parents, we are proud of our children’s milestones. I’ve been writing down Katie and Patty’s milestones even until today. Especially for Katie, I know how precious these milestones can be. Any new word that Katie says is a milestone for me.
Stringing words together is a bigger one. How wonderful it was to hear “Let’s make a pizza” or “I love you, Patty”. These are small phrases that you’d normally take for granted, but when it was spoken at three or four years old after a long time of just using single words, this is a godsend.
Patience and Perseverance pays off
Anyone will tell you I’m not the most patient person in the world. I like doing things efficiently and quickly. I also have a pretty quick temper that flares up at the slightest provocation. And your patience is never more tested than when you’re with children.
I have to be honest that in these past years with our girls, there have been raised voices, tears on both our ends and frustration. Katie’s unique behaviour can sometimes be challenging for us. Even more so when she has a tantrum or meltdown in public.
In one therapy session, I watched Katie’s therapist get Katie to put a letter block into a slot, and Katie simply would not do it. They tried this several times, and I thought “if this was me at home, I would just give up already”. Eventually Katie did what she was asked to do, and I could see the therapist smile in victory.
Kids on the spectrum put in so much effort to accomplish tasks that come easy for us, so the least we can do is to be patient with them and celebrate any progress made.
Routine, pictures and always a back up plan
What happens to you when you miss your regular morning coffee? You feel like something’s off, right? It’s the same way with some kids on the spectrum. If their routine is not followed, the possibility of a meltdown is very high.
For Katie, we have learned that routines help regulate her behaviour. She is much more calm and happy. We are lucky, though, that we don’t steer very far away from her routines on a daily basis. There is a little wiggle room for some unexpected things.
We have a pretty much set routine for the week, so Katie knows what to expect. But there are some days where we have to go to a party or go on a trip. In those cases, it helps when we show her photos of our destination. Sometimes, we show her people that we will see (she mostly knows the people in our Life Group).
Most of the time, this works for us, but there are days when she’s really feeling off or overstimulated (by noise, light, people) and she may have a meltdown. In those times, a favourite food or toy helps, or move her to a quiet room. But if it’s really bad, we take her away from the situation by driving her around or simply go home.
It Takes a Village
The progress that we see with Katie right now is not just our work as parents. It took a whole team of people to get her here—her ECE teachers, speech therapists, behaviour therapists, paediatricians, ear doctor, early intervention teachers and her current special education teachers, and even our friends here in Wellington. I’ve joined Facebook forums and attended parenting programmes. It is a whole community of people who love Katie and want to see her reach her goals.
Being a parent of an autistic child, you will quickly learn that you cannot do this alone, and that there are people out there who are willing to help you. You will have to advocate for your child’s needs and you’ll be working with different individuals who have the best interests of your child at heart. It’s a good journey to be on, because you will get to know a lot of people along the way and your child can only benefit from it.
Would you like to know more about Autism? Here are some books I’ve found enlightening and inspirational.
The Reason I Jump by Naoki Higashida
Uniquely Human by Barry M Prizant, PhD
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Thinking in Pictures by Temple Grandin
Some NZ Autism Websites:
