As a parent of two kids with ASD (Autism Spectrum Disorder), which is a developmental
disorder affecting communication and behaviour, I struggle with the question of when is the right time to share that little tidbit of information with others. So far it’s been shared with teachers, grandparents, school administrators, family doctor, a few close friends, and a few other family members.
As someone who does a balancing act of trying not to care what others think, and caring too
much, I do sometimes feel awkward when my kid or kids are acting, well, like their own quirky selves. For example, my younger son is obsessed, er, um, (sorry) passionate about elevators. He is fascinated with their mechanics, their appearance, whether they are made by Thyssen Krupp or Delta, Schindler or Otis. He shows his excitement by bowing towards the elevator and tensing up his ab muscles, and on other occasions will kneel down on the ground head bent right over almost to the floor as if he were worshiping the elevator. It looks unusual to say the least. When others are around who witness it, I try to play it cool and act like it’s a normal thing for a kid to do. Some onlookers observe with quiet politeness while others will warn my son to be careful not to get his nose stuck in the closing elevator door. These two things are fine with me.
I think even if I were to divulge this information about my kiddos diagnosis, I’m not sure how a person might react. All they might see are the meltdowns, the rigidity, the difficulty and
stubbornness in transitions and chalk it up to poor parenting on my part resulting in bad kid
behaviour. And I guess I can understand that because sometimes it’s hard to tell the difference between naughty behaviour and spectrumy behaviour because they can be one in the same. For example: my kid has trouble with transitions, so do many other neurotypical kids; my kid sometimes has a hard time staying on task, so do other kids and my kid sometimes has huge meltdowns, and so on, and so on.. The difference is that this is a lifelong condition that will not go away, but with early interventions, some behavioural therapy, a whole lot of patience and understanding, my kids might be able to live a somewhat normal life filled with all the things you and I take for granted such as: having a home, friends, a job or career, a partner, opportunities, good health and someday a family of their own.
In the meantime, we’ll take it one day, one stare, one unusual behaviour at a time and deal with each situation as it happens with the hope that others will show compassion and patience to my little weirdos. For now, I am guarded and still protective with sharing this information with others
- They share first about their own kids
- My kids behaviour has somehow negatively impacted them
- They ask in a kind and genuine way about my kids
- You’ve just read this blog post!