While standing first in line to be let in the outdoor pool, T tells me he’s peeing. I look down and sure enough, a puddle of pee on the pavement with 20 people looking at my 5-year-old.
I feel mortified and I could not hold in my embarrassment. “That is disgusting, why would you do that?!” I reprimand him loudly, as if that would make the situation less humiliating.
The elderly woman behind me looks at me but doesn’t say anything. It is those silent stares that kill me. You know what they are thinking especially when they don’t say it.
The pool gates open and they let us in. T, who is often clumsy, manages to find a way to trip on plain flat ground. He has a small scrape on his knee and of course, it’s like a great Shakespearean tragedy and the waterworks begin.
I’m still fuming from the pee and I pull his whiny self up and we walk over to the benches to drop off our things.
I tell him he should’ve held his pee in or told me he needed to use the potty. And as always, I feel like it’s in one ear and out the other ear with T.
To a stranger – even to family and friends – it is hard to imagine that our handsome, sweet and normal looking child has an invisible disability.
Because of this, his behaviour often illicits misunderstanding from others – like he is being a bad kid, intentionally willful, or being “weird.”
I know how other feels or think, because the hubby and I sometimes feel and think these exact same things about him.
T has a prognosis of at-risk fetal alcohol syndrome, an invisible disability caused by prenatal exposure to alcohol. His birth mother admitted to drinking for the first three months of pregnancy.
T is too young to diagnose. He has made great gains thanks to early intervention services and he seems to hit most developmental milestones and so our developmental pediatrician wants to wait before giving him a formal assessment.
Recently, T received a diagnosis of ADHD and as such, we started him on medication. Four weeks in, it is still too early to tell what the long term effect of the medication will be.
T’s behaviour often elicits strong reaction from others. He struggles with hyperactivity, focus and emotional regulation.
He is the kid that will never stop moving and sit down to focus on a task. This creates challenges with learning at school.
He is the kid that gets angry, upset and frustrated easily. When he gets emotionally charged, it results in meltdowns, sometimes hitting his parents, and some times he would even push a chair down or start throwing toys at us.
Thankfully, through behaviour therapy services, we have developed and implemented wonderful strategies that have made a big difference. And his outbursts are now often short lived.
I think a lot about how the world will react to T. I guarantee that most people will not be as understanding as the hubby and I.
The darkest moment of parenting T to date came in Spring 2019, when we were informed by the T’s Montessori that he was not invited back to the fall school year, because a parent had complained to the owner about T’s behaviour.
Can you imagine how that felt? To have a stranger, who didn’t have the guts to talk about this to our face, play judge, jury and executioner to a 4-year-old.
We are blessed to currently have a very awesome school, principal and teacher and support services for T. Being kicked out of Montessori ended up being a great blessing!
But the hubby and I are not complacent and are prepared – while staying cautiously optimistic – for the battles ahead. Battles with teachers and administrators who don’t want to work with us – because these people will come. Other parents and kids who don’t understand his condition.
What hurts me most is how this will affect T’s self concept and self esteem, because he is a perceptive child.
Kids with special needs – especially those with an invisible disability – often have difficulties making friends. This part kills my heart the most when I think about it.
And this is why I blog. To spread awareness.
The wonderful UK-based blogger and author Andi Webb at Diary of a Gay Dad nominated me for a Sunshine Blogger Award – thank you, Andi!
And one of the questions he asked me, as part of the award process, is “Why do I blog?”
It’s quite simple – to spread awareness.
T’s brain-based disorder is never going away, as much as I pray for it to go away.
But I am not going to let that get in the way of a positive and quality life for T.
There is no point focusing on things that I can’t change but rather to invest my energy on things that I can affect:
1. Maximizing his potential through intervention services and therapies.
2. Focusing on positive parenting strategies to maximize his self concept and self esteem.
3. Educating others about an often-misunderstood condition so that they can see beyond the behaviors and see the wonderful, bright, funny and caring boy that we know T to be.
There are so many wonderful advocates out there, some of whom I met recently through my still new blogging journey, such as Robyn at the wonderful Autism in Our Nest blog and also the equally inspiring Our Sacred Breath and Love That Max.
Everyone is doing their part to make this world filled with a little bit more sunshine.
T fills our lives with sunshine – and yes, lots of stormy days too – and I want to share his ray of light for the entire world to see just how incredibly amazing children like T can be.
One important life lesson T continues to teach me is to not let the hardship wear me down nor to become cynical.
And to realize that there are many people who do understand, who do empathize and who will help you spread your message and awareness.
On that same afternoon that T peed outside the pool, we did end up going into the pool after I washed him and his pants off in the shower first.
While we were in the pool, the elderly woman who stood behind us in line, swam up to me.
“I just wanted you to know that I’m sorry I didn’t help earlier when your son fell,” she said. “I just didn’t want to get close, because of COVID. I just wanted you to know because I felt very bad.”
I smiled at her and said thanks. We both looked at T who was jumping off the pool’s edge into the water. “I think he’ll be ok,” I said with a smile and thanked her for her kindness.
And he will be ok. I just need to keep reminding myself of that.