I am grateful to have come across Ann and her lovely blog Gray Colored Glasses via a community resource website we both used while starting our separate journeys. She contributed a heart-felt article to my humble blog Downunder Dad that took my breath away, which you can read here. So the least I could do was repay the favour, right?
Well, it has not been that simple. I have been extremely apprehensive. The blog post she shared with me about parenting a child with special needs (something we discovered we had in common) would have been very personal for her to compile; I know that now. I have struggled, keen to do a decent job. I eventually came up with the post below, and an even deeper appreciation for what Ann wrote and bravely sent to me.
Please tell us a little bit about your story…
For the first 35 years of my life, the only time I came across the phrase Asperger’s Syndrome was in 2013, in an Eminem song entitled “Wicked Ways.” Interestingly, my experience and awareness timeline seems to align with that of society in general, at least in Australia.
Growing up through thirteen years of school and five years of university, I had never heard of Asperger’s Syndrome. Looking back, with what I know now, I should have. I am positive that I have shared classrooms and friendships with many (yes many) extraordinary individuals who are “on the spectrum.”
It is wonderful to see the awareness growing in recent years.
First child, first signs
It was first flagged to us by our son’s kindergarten teacher when he was four years old. She mentioned the physical signal of his tip-toe walking, and I can admit now that I ignorantly and quickly dismissed it as rubbish. Typical Dad denial, right?
We had a close friend who was something of an educated and accredited expert mention it at the same time, plus we were asking around about some of his other notable behaviours, too. It was a process, not a moment.
We had no basis for comparison. He was our first born child. His sister was only a baby, some three years behind him. We knew he was different in certain aspects compared to his friends, but all children are special in their own unique ways.
We have been the Mum and Dad of an Asperger’s child since 2011, and during that time our parental resilience has been hardened, and our alcohol consumption has increased!
Asperger’s: what’s in a name?
Asperger’s is technically an old-fashioned term for a particular section of the Autism Spectrum. In recent decades expert understanding has evolved, and more accurately our son is now deemed as having “high-functioning autism.” Nevertheless, the whole autism spectrum is extremely broad and our beloved boy epitomises the characteristics of a recognised “Aspy.” My wife and I find ourselves constantly referring to his autism as “Asperger’s,” and we believe (rightly or wrongly) that it helps when others are trying to learn or using Google.
“Ever heard of Aspergers? It’s a rare condition/It’s what you’re suffering from when you simply don’t care if it’s an/Eighty-degree day and there’s no fricken air conditioning…” ~ Eminem, Wicked Ways
How has your son’s Asperger’s diagnosis changed your family?
Our son is an undeniable, almost comically accurate, textbook “Aspy.” Now that we know what high-functioning autism is, it is obvious that it lives within our boy. Asperger’s is definitely his super power. It has already been an incredible journey, and we know the future will be…hmmm…adventurous.
From our conversations with the kinder teacher, we approached our local family doctor. He was rather prompt in recommending we speak with a nearby child psychologist. Making that appointment was one of the best things we did as parents. That man would become an extraordinary source of learning for us.
On our initial visit we waited in the foyer for five minutes, during which time our curious son had arranged all of the toys from a messy crate into a line and ordered them by size. The door opened. The psychologist smiled. He greeted our young man, and we went inside and took a seat.
After a little chit-chat, and after just 90 seconds, his first question to us was direct and would prove to be a pivotal point in our family life. “Do you want my expert opinion?” he asked us in a daunting and straight-forward manner. We quivered like a pair of nervous and timid emu chicks. “I believe your son has Asperger’s Syndrome.”
A process, not a moment
This wonderful psychologist then referred us to the most highly reputed Autism Spectrum Disorder (ASD) clinic in our huge city. Ten weeks later, driving to the long-awaited consultation, his mother and I were a collective nervous wreck. We had no idea what to expect, what might happen, what they might say. The fear of the unknown was strong, but not as overwhelming as the fear of potentially being told we had failed as parents.
The visit to the clinic consisted of friendly laughter, number games, questions, stories, riddles, hypotheticals, analysis, and pride. My main memory of that day was recognising for the first time that our son was, well…bloody brilliant. The results would inevitably reflect this. And with that feeling of awe came the foreseeable fear that I might single-handedly ruin his rainbow. Typical Dad insecurity, right?
What’s in a diagnosis?
I will always remember that the teachers at his school thanked us for getting the diagnosis sorted.
We had no idea, but they explained that they are often in a difficult situation when it comes to communicating with parents. Despite their extensive and ongoing experience dealing with a huge variety of children every year, there exist serious limitations on the conversations they are allowed to have with parents. Even if they suspect (or know beyond doubt) that a certain child is most likely living with a particular medical condition, there is not a lot they can do to help without an official diagnosis. This made me sad.
Our diagnosis has changed our family in nothing but positive ways. Our thirst for knowledge about Asperger’s has exploded, our ability to cope is constantly improving, and having an explanation for our son’s quirks and challenging behaviours is truly life-changing.
We are also aware that our other child is different neurologically, and she needs to be parented uniquely. We require the use of two brushes to paint our family portrait.
What is the most challenging aspect of parenting your son?
Without a doubt it is his Asperger’s-driven attitude, which places him at the centre of the universe and everyone else just floating around the outskirts for the purposes of serving his desires as required. That might seem dramatic, but I feel like any other Aspy parents would be nodding along as they read the above.
When it comes to parenting an Asperger’s child, it is an absolute mind-bending exercise. They are frustratingly literal and logical, provided it suits them and their wants (or more appropriately, I should say their “needs”). As explained by our psychologist, we must throw away our neuro-typical rulebook. If we are all playing life like Monopoly, kids with Asperger’s are playing Scrabble.
Without doubt that was the worst part of not having the diagnosis, not knowing what we were dealing with. You cannot imagine the frustration and futility in trying to implement the simplest of parenting concepts and the result just being a house full of people screaming at each other and not knowing why.
Life at home
It is severely challenging and a gorgeous blessing that our son’s worst and most-deflating behaviour is reserved for the comfort and safety of the family home. Aren’t we lucky?
Well, depending on our perspective at the time (which is always related to how much sleep we have had), we really are lucky. Although the brutal concentration of his outbursts are always absorbed and witnessed by his parents and his sister, it would be worse if it occurred in public. We are grateful that has rarely been the case.
At home, our young son is like a grumpy old businessman from the 1950s. When he goes to school the maths and spelling and science are all rather easy, a breeze in fact. Especially when compared to the difficulties of gauging and interpreting the schoolyard’s social cues and the associated human-based, illogical inconsistencies. After a full day of that, he is exhausted, utterly pooped. He seeks the solace and respite of a familiar and secure home base to kick off his shoes, wear some comfy slippers, crack open a beer (not really), put his feet up, turn on the TV, undo his belt, lean back and relax.
Unfortunately when a primary-school aged Asperger’s child wants to unwind, from his or her vantage point that translates into “you all HAVE TO let me do whatever I want.” There is a constant trade-off. It feels like ‘bad parenting’ versus the formation of a potential world war: give in or suffer the consequences. That is the biggest challenge, particularly when you are parenting another non-Asperger’s child at the same time.
“It feels like ‘bad parenting’ versus the formation of a potential world war: give in or suffer the consequences.”
Our son is well liked. In fact, I would say he is widely loved. His personality is larger than life, and he has a wonderful sense of humour. Plus we are continuously working on his manners towards others to develop them to a level accepted by society. Most people would be blissfully unaware of his condition and the trying circumstances that surface at our house. If the side-effect of this is having his meltdowns at home, we’ll take it.
What techniques have you implemented as a couple to remain a strong team?
Like an established championship wrestling combination, we always try to know when to tag. When you are in the middle of an Asperger’s hurricane, it can be difficult to recognise the carnage that is swirling all around you. The power of your spouse tapping you on the shoulder and offering to take over is massive and mighty.
Interestingly, when my wife read this she reminded me that it was not always like that. In fact, the first thing that came to my mind when contemplating the strategies that have worked best for us as a couple, the tagging, is the same idea that used to be a common source of friction and fighting. Our parenting experience has grown to a point where we no longer feel that an empathetic offer to help out or even take over is an indication that one of us is accusing the other of failing.
We have also developed a healthy habit of general Asperger’s- related communication, usually pouring a wine and going over what has worked and what has failed. Figuring out plans of attack for next time and encouraging one another consistently.
What should parents of neuro-typical kids know about your life?
Just because you don’t (or can’t) see the difficulties does not mean they don’t exist.
For years now we have simply stopped trying to force Friday night socialising; it is a losing battle. A week of school drains an Asperger’s child’s battery, and we eventually realised it was cruel to then force him to play with our friends’ kids because we want to have a beer after the working week.
Also our parenting will be different from yours, and that’s OK.
“Just because you don’t (or can’t) see the difficulties does not mean they don’t exist.”
As mentioned, our parenting styles vary between our own two kids, and some of the things we do with our son would certainly raise some judgmental eyebrows.
Our approach is not lazy, it is not rude, and it is not ignorant. It is actually the complete opposite. We have worked extremely hard to learn as much as we can to collaborate with him to be socially acceptable and smart with how we manage his condition. (And that is why we let him have our phone!)
What message do you have for other parents of kids with special needs?
You are doing an amazing job. You are winning, especially when you feel like you are losing. You are showing up. You are there, and you are trying your best.
Keep pushing yourself forwards, you are improving, you are learning, people are noticing, and they appreciate you. Even if your special-needs child cannot right now, or never will.
Get a diagnosis. Seek professional advice. Ask for help. Be proud. Read. Talk. Love.
Downunder Dad is an Aussie bloke undertaking an adult journey full of personal trial and error. The blog www.downunderdad.com is simply a look at those life lessons after the age of forty, documented & shared. The website aims to engage, entertain, educate and evolve.