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.
Have a wonderful weekend. Best regards to your family. ☀️🙏
I know very little about ADHD but my friend has it and he told me he was once put on a wrong medication that gave him MORE emotional dis-regulation like he totally freaked out about something that he never thought was a problem before being on the medication so BE CAREFUL WITH THE MEDICATIONS! Just find the right medication is all I mean. Great post. 🙂
Thank you. We are lucky to work with an amazing developmental pediatrician and are monitoring the effect of the medication (generic Ritalin). Lots of positives and a few things were keeping an eye on. And will adjust as needed. For sure, the emotional disregulation is one thing I’m mindful and cautious of. Thanks for commenting!
It is a shame that people are judgmental and indifferent instead of being caring and understanding. Many are parents out there yet are quick to stare cold to another parent when they see something they dislike. My son went to a terrible 2’s & 3’s, & even friends were so negative and unsupportive that we stopped attending gatherings, which created another set of more negativity. We can’t please anyone but I try to worry less of what they say cause it doesn’t matter anyway. T is an amazing boy and he will grow up into an amazing man . He has amazing loving parents that will show him a much better, kinder world.
Thank you, that is very kind of you to comment. T is an amazing kid, indeed! And The hubby and I hope to help others see that. And thank you for sharing your story. In my four years of parenting T, I’ve learned to thicken my skin and to care less of the people who don’t matter and to focus on the people who do, like T. Take good care!
The invisible disabilities are definitely the hardest! My heart goes out to you and your hubby!
Thanks Diane. I appreciate the kind thoughts. While this was a more somber most, I can also assures readers we have so many amazing, fun and wonderful moments. It’s more sunshine than clouds with T. But it’s important to also raise awareness of the cloudy moments to make it a better world for him and other kids like him.
A professional that was working with Declan when he was two asked me to speak to another woman whose son was just diagnosed years later. Her concern was that if her son was put in special needs schooling her son would be overlooked and just put into the corner – he would be too hard to work with. I told her that I felt that special needs children placed in a regular classroom are the ones who are overlooked because the school is not always prepared to handle the needs of the child, but when the child is place in a special needs classroom, ALL of their needs are addressed to really help the child flourish based on the child. Like what you saw with T is what I saw with Declan. He did so much better there!
I’m sorry about the looks. They suck. I’ve received my share as well. Some people are immune to them but I get you – they still get to me. We’ve been going to our pool for 10 years now, and believe me, some years were way harder and we were way more apparent with problem behaviors flourishing. There are still some people that go to the pool that have been as long as us and who still just stare at us waiting for the next “big show.” They do not walk in our shoes and have no idea what we manage every day. You guys are doing a great job! Don’t let those looks get in the way!
Thank you Robyn as always for sharing your story. I’m glad I met you and your blog through this blogging journey!
The “inclusion model” debate is certainly an interesting one. T was put into a specialized program this year which made a huge difference. Then the government cut the program. Their official reason was they were moving to an inclusion model but it’s really a budget cut if you ask me. I’m on the fence about this. I feel without dedicated supports for special needs kids, they will suffer in an “inclusive” classroom. I can rant about this for hours… maybe my next post? 😂
In my four years of parenting, I’ve learned to grow a thicker skin and am better at ignoring the looks. But we’re all still human and some days just get to me. One memorable moment was when a woman in a grocery store basically implied that I should spank T when he was in one his moods. Can you imagine?! Lol.
Thanks as always for taking the time to share your experience. It always helps to chat with someone who gets it! 😊