This isn’t my story. And, in many ways, I’m glad because it’s not an easy one. But, more and more parents have to face the prospect of having a child or children with some kind of special need. This might be a learning disability or a deficit in attention. But it may be even more serious. Today, I chatted with a very treasured friend of mine, whose gorgeous little boy, Hunter, was recently diagnosed with autism. She shares her insights on having special needs kids.
I remember getting her text to tell me about the diagnosis. I was suntanning, completely stress-free, while she’d just got news that knocked us all flat.
She agreed to be interviewed for the blog because we both want people to understand special needs kiddos better, and to encourage other moms that may find themselves on this same road. Here’s her story.
When and with what was Hunter diagnosed?
Approximately two months ago, Hunter (who is one month away from being three years old) was diagnosed with ASD Spectrum, or autism.
We are not sure on which side of the scale his autism falls but, at this age, the doctor thinks he is in the middle of the spectrum. Things could either improve or digress with time.
How did you feel with the initial diagnosis? Did you have any clues beforehand that this was the case?
Although we had some very emotional moments and days, we actually felt really relieved when he was diagnosed as we had really been battling. We knew something wasn’t right but we weren’t sure what. The moment we started doing research on autism, everything made sense and clicked. It helped us to understand him better, right from day one. We felt positive that now we would be better equipped to look after him to the best of our ability.
How does their condition affect your daily life?
When you decide to have a child, you know that your whole world is going to change. But, when you have a special needs child, every single decision you make, whether small or big, revolves around them and how it will affect them.
Simple things like going to the supermarket take real planning, as things inside the shop can set him off and you always need to have an exit plan where you are prepared to leave your trolley full of groceries and just run.
We need a lot of patience, as you cannot discipline an autistic child in the same way that you would a child without it. So, you need to constantly keep trying new things to calm him down when he has meltdowns or doesn’t cope with everyday activities. You need to constantly think out of the box.
Our social life has changed drastically. We use to socialise every weekend with friends and we used to love eating out at restaurants. Both of these are now rare occasions as staying home is just so much easier and stress-free, especially for Hunter.
Hunter has no fear, which means that we need to be on high alert at all times, ready to run or catch. You never ever get to relax. He doesn’t feel pain and he isn’t scared to run out the house and down the road without even looking back to see if we are following him.
What are your favourite qualities about Hunter? Any cute quirks that just melt your heart?
Autistic children are normally known not to show affection. We feel so fortunate that Hunter hugs and kisses us. Just recently, he has started kissing me out of his own. The other day, he was lying on my arm and started kissing my arm from top to bottom. When he walks up to me and grabs my hand and looks up at me with his beautiful dark eyes and says “mommy WALK”, I battle to say no even if I’m exhausted.
We have a family bath every morning and night (Yip, me, hubby and Hunter in one bath). It’s our favourite time together – he sings and splashes and laughs constantly.
Hunter has such a sense of humour. He plays tricks on me every day and really makes me laugh, the kind of laughing where you actually laugh out loud.
What continues to be your major challenge(s) in terms of living with someone with this condition?
Energy levels! We are constantly exhausted. I knew being a parent would be tiring, but I never realised we would suffer from exhaustion like this. Our love never runs out – but our energy sure does. We need to make sure that we look after our health. When we can sleep, we sleep; we try to eat healthily and supplement our bodies so we don’t get sick too often.
Hunter is unpredictable in most situations and we need to be ready to completely change our plan at the drop of a hat.
What have you learnt from it? What joy has it brought you?
It’s taught us to be PATIENT.
We are grateful for what we do have. Hunter is the best thing that has ever happened to us, and his condition is not as bad as what other families are going through.
It’s humbled us as we also need to rely on family and friends for help and encouragement.
What do you want Hunter to know?
You are perfect just the way you are!!! You make us laugh so much. We do not want you to change – we are going to change and learn to understand YOU.
How do you unwind / regroup (on a personal level)?
I find that exercise helps both me and my hubby. On days that we feel emotionally and physically exhausted, we push ourselves to do physical exercise as it really revitalises us to continue another hour.
We also find date nights are so important, and when our in-laws take Hunter for the night, we try to go to our favourite restaurant, Sanook, share a bottle of wine, and keep the romance alive.
What advice would you give to other moms that have special needs children?
Don’t compare your situation with moms at school or in your social group. Your child and situation are unique.
Don’t be afraid to let your loved ones know you are battling and need a timeout. It doesn’t make you selfish, it makes you human and helps you refuel so you can be the best parent.
Thank you to Tracy and Bobby for sharing the many ups and few downs of caring for a cute, quirky, fun-loving gem like Hunter.