The book, "Wonder", and the movie of the same title truly resonated with me. I cried buckets during the movie, mostly during Isabel's (the mother) scenes. It was as if I was watching myself (or a better version of me) on screen. Isabel was strong, patient and believed in the general goodness of humanity (almost to a fault). I wish I could be like her. I hope to find reasons to believe in humanity the same way.
THE "INCIDENT"
Last month I got a call from a mom about some disturbing things my son had been saying in a Viber Group he was part of along with other kids in his age range. The thing is, he had only been in that group for a month; and, while I had been meaning to, I never got around to checking the thread.
Apparently, he had carried his pretend game too far. Somehow he had built an alternate reality, merging characters (think Assassin's creed) and events he had read with his own deepest wishes. You see, there is no middle ground for my son. In this alternate reality, he was living the life of his favorite characters ... had a father, an older brother and a younger one. Some friends took everything he said and thought his life was awesome ... and crazy (and probably thought I was either such an irresponsible mom or a bad ass one). Some who knew him better played along, but then got confused between reality and fantasy. And, because his favorite characters are adults, he was also indiscriminately spewing some mean and bad words he didn't entirely understand. He thought cool tough guys used bad words. He was completely in character. Of course, the mommies got concerned. I did, too.
I also felt hurt that he found his life so boring that he created an alternate reality for himself. And I felt helpless, knowing the deepest and oldest desires he had been praying for are things I cannot give him at the moment (or ever ... there's no way I can produce an older brother, right?).
I processed everything with him for an entire day, took his phone and explained to the concerned mom. He issued apologies and explanations to his friends. I issued apologies and explanations to the mommies. Then my son and I agreed he will write his stories and I will be his editor (He wants to publish).
CAMP LIFE
A week later, we dropped him off to his first ever 5-day camp --- without us. "Camp Life" was facilitated by CANDENT, his Social Skills Therapy center, to provide kids from the center a controlled environment to practice their social skills.
(Social skills is the biggest challenge for individuals in the spectrum. Their impulsiveness and inability to immediately draw correlations [or make connections] inhibit their ability to understand the "grey areas". As such, they are often viewed as rude or socially awkward).
Before deciding to let him go, I talked to one of his therapists, who, surprisingly, was not as concerned as I was. I have to say, I still had misgivings and apprehensions, but I knew he needed to be exposed to these situations. What better venue than a 5-day camp attended by a mix of kids (kids with conditions, siblings of these kids, and regular neurotypical kids of some really radical parents) and managed by an entire team of licensed therapists and SPED (special education) teachers?
That day, the center decided to leverage the parents' presence and organized a full day Communication Workshop. And it was here that I finally understood the therapist's reaction to our latest "incident". I felt an entire spectrum of emotions wash over me ...
The problem
THE "INCIDENT"
Last month I got a call from a mom about some disturbing things my son had been saying in a Viber Group he was part of along with other kids in his age range. The thing is, he had only been in that group for a month; and, while I had been meaning to, I never got around to checking the thread.
Apparently, he had carried his pretend game too far. Somehow he had built an alternate reality, merging characters (think Assassin's creed) and events he had read with his own deepest wishes. You see, there is no middle ground for my son. In this alternate reality, he was living the life of his favorite characters ... had a father, an older brother and a younger one. Some friends took everything he said and thought his life was awesome ... and crazy (and probably thought I was either such an irresponsible mom or a bad ass one). Some who knew him better played along, but then got confused between reality and fantasy. And, because his favorite characters are adults, he was also indiscriminately spewing some mean and bad words he didn't entirely understand. He thought cool tough guys used bad words. He was completely in character. Of course, the mommies got concerned. I did, too.
I also felt hurt that he found his life so boring that he created an alternate reality for himself. And I felt helpless, knowing the deepest and oldest desires he had been praying for are things I cannot give him at the moment (or ever ... there's no way I can produce an older brother, right?).
I processed everything with him for an entire day, took his phone and explained to the concerned mom. He issued apologies and explanations to his friends. I issued apologies and explanations to the mommies. Then my son and I agreed he will write his stories and I will be his editor (He wants to publish).
CAMP LIFE
A week later, we dropped him off to his first ever 5-day camp --- without us. "Camp Life" was facilitated by CANDENT, his Social Skills Therapy center, to provide kids from the center a controlled environment to practice their social skills.
(Social skills is the biggest challenge for individuals in the spectrum. Their impulsiveness and inability to immediately draw correlations [or make connections] inhibit their ability to understand the "grey areas". As such, they are often viewed as rude or socially awkward).
Before deciding to let him go, I talked to one of his therapists, who, surprisingly, was not as concerned as I was. I have to say, I still had misgivings and apprehensions, but I knew he needed to be exposed to these situations. What better venue than a 5-day camp attended by a mix of kids (kids with conditions, siblings of these kids, and regular neurotypical kids of some really radical parents) and managed by an entire team of licensed therapists and SPED (special education) teachers?
That day, the center decided to leverage the parents' presence and organized a full day Communication Workshop. And it was here that I finally understood the therapist's reaction to our latest "incident". I felt an entire spectrum of emotions wash over me ...
- I felt relieved. What my son was going through was "normal" for those in the spectrum and have similar conditions.
- I felt affirmed. A mother (and a loving auntie) knows her son (nephew) best. Somehow, following where prayer, love and mother's instinct took us, we ended up on the right path and doing the right thing for him.
- I felt I wasn't alone. There are parents/families, teachers, therapists going through the same emotional, physical, mental, spiritual rollercoaster I am going through. They, too, get tired, frustrated and hurt whenever they deal with their kids. It's normal. And it's alright. That's what timeouts are for.
- I felt hopeful. There are parents (Tiger moms and dads), teachers, and therapists (heroes) who, like me, believe in my son (these kids) and will walk the line for him (them). There are people who will stumble, but will get back up to help kids like my son have a shot at living full lives within a cruel society.
- I felt energized. The condition is manageable with intervention, dedication and constancy. We can and let's do this!
THE AFTERSHOCK
After the camp, I forgot to take back my son's phone. He assumed it meant he could contact his friends again. Still high from the events of the past 5 days, he thought it a good idea to introduce his new friends to his old friends.
It was catastrophic.
His old friends, apparently, felt he just dropped them like a hot potato and completely forgot about them during his hiatus (even though he told them I was taking his phone). So, when my son introduced his new friend, the old group's initial reaction was jealousy and then hostility. The new friend, being in the spectrum as well, went on defense mode. So, while my son firmly kept his promise to be "real" with his friends and not use bad words, his new friend was on all out fight mode (expletives included). Consequently, the friend and my son got booted out of the group.
My son was broken. So was I. (I also switched to fiercely-protective-mom mode). And, suddenly, I understood how Mama Mary felt when Jesus was being ridiculed by people who, only a few days before, were praising Him; and deserted by the very people He loved. It felt very much like a sword piercing my heart a hundred times. It took everything in me to keep a strong front.
You see, unlike me, my son is an extrovert. While I take comfort in my solitude, he needs to be around friends --- lots of them. But it's the one thing he has difficulty cultivating and keeping.
STARS & BOXES
It reminded me of the final exercise we had at the workshop. The facilitator gave us a problem to solve.
We have a paper star that we need to put inside a box with a small round hole. How will we do it?
The potential solutions put forward by some parents
- Fold the star
- Cut the star up
- Crumple the star then push into the hole
The ideal solutions some parents came up with
- Open the box
- Widen the hole
The star represents our kids (for me, it's not even just the kids with conditions but all kids, in general). The box represents society as a whole. The solution is to drive Inclusion. The reality is we are still a long way from opening that box.
During one of the sessions, a parent raised a question: "Should we explain to people about our child's condition?"
This was a question I had struggled with. I considered it. But the reality is we can only explain our child's condition to so many people; and only so many people will truly understand. If we do this now, who will do it for them when we're old or gone? My stance from then on had always been to equip my son, so that he is able to deal with these on his own.
A follow-up to that was: "Adults are easy, but how do you explain it to children? Children can be so unintentionally ruthless."
My take here: Teach children kindness. Because, if children are taught to be kind - to see beyond form or wit, then there is no need to explain anything to them. They will just be kind. Naturally.
In fact, the same is true for adults (moreso!). Why do we have to explain and spell out a condition before people shift gears, make allowances and choose to be kind? Why should we make distinctions? Should we not afford everyone kindness? Perhaps it's not a condition but a serious illness, a financial challenge, a terrible loss ... or just a particularly bad day. Shouldn't we, by default, be kind to each other? Indiscriminately. Always.
RJ Palacios, in just two simple words - "Choose Kind", gave us the basic formula that will trigger the breaking down of the box of society. Imagine, if everyone decided to "Choose Kind", it will be a silent revolution that will change society (and the world) at its very core!
So, "Choose Kind" with me. Let us give each other a reason to believe. It won't be easy, for sure. We will stumble and fail. But the good thing is, there will always be an opportunity to make up for it.
Oh! To teach our children
Always
Kindness above all else
Regardless and despite all else;
To find joy in giving joy
And in the simple things;
To see beauty in all things
Visible and, moreso, the invisible.
That in being kind to others
They might learn to be kind(er) to themselves.
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