Daily living with autism #5 — on days it feels like anything but a blessing

Something I read earlier this week about a stranger’s caregiving journey filled me with immeasurable sorrow and dread.

Someone in a shared group chat on my WhatsApp posted the following text from a stay home dad:

“Some of us are more lucky to have higher functioning children. Some of us don’t. Some have children literally abusing us daily, killing us both physically and mentally. Some don’t. Some of us are heavily burdened, let it be financially, medically or otherwise. Some of us don’t. So to the many whom tell me that our children is a blessing, please do tell me how is it the case?”

In short, this dad is asking where’s the silver lining in his caregiving journey of a special needs kid?

A question I too wish someone would give me an answer for. Or at least a manual or playbook telling me what to do. When the going gets tough, and the day feels like anything but a blessing!

Special Needs Fathers need our own “Silver Linings Playbook”

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Photo by Kaustubh Joshi on Pexels.com

If you’ve been faithfully following my blog, you would know I too have had my fair share of caregiving grievances.

[But if it’s your first visit, you might want to check out my archive of posts. There, I’ve amassed — since April 2019 — snippets of my raw, ongoing and unfinished daily journey as a stay home dad to C, my beloved son who was officially diagnosed with ASD nearly five years ago.]

Though I’ll never trade my now-11 year old boy for another — not in a million multiverses of madness — on some days it’s certainly no walk in the park being his caregiver.

So when I see a WhatsApp message that raw and painful, it’s not hard to commiserate; especially when it appears to be a daily reality for that poor dad.

Now I cannot and will not speak to how raw and painful it is for him. For we each have a different kid obviously, and therefore a different caregiving journey. And like he said, some dads do indeed have it a lot tougher than others. (For starters, my kid doesn’t abuse me, “killing…both physically and mentally”; at least not yet. More likely it’s the other way around for now!)

Plus I don’t even know this dad. After all, it was a forwarded text message, by someone in our WhatsApp group clearly moved and concerned. Since this chat group comprised many special needs caregivers, no one in there would falsify such a message.

And there’s no need to.

Not when the reality of caregiving in the special needs community is far truer and more dramatic than any fake news, fiction or misinformation could ever hope to conjure!

Yes, the journey we special needs caregivers are on can feel like a mortal wound that never heals! Like a band-aid ripped off again and again, each time exposing afresh the scar and the bloodied skin underneath.

Every. Single. Day.

It often feels like we need more than a David to overcome this Goliath of a trauma when it comes to being a special needs caregiver!

O David where art thou in my caregiving journey?

Photo by Mateus Campos Felipe on Unsplash

In January this year, an unspeakable tragedy involving the murder of twin 11-year old boys with ASD took place and shocked our nation.

More importantly, it brought much needed attention to the stress of caregiving in the special needs community; and the toll it can take on caregivers (the father of the twins was charged in court for what happened).

Too affected with deep sorrow and dread at this horrific news, I wrote a blog post then because I didn’t know what else to do. All I knew was this daily living with someone who needed constant care for his day-to-day needs is something I’m very familiar with. I know what it can do to someone’s mental and psychological well-being, and I was desperate to beg society not to judge the twins’ father harshly.

And I thought with that tragedy, maybe more people will recognise this reality and we can summon more help. Maybe see more empathy all around.

But all it takes is a text message like that to jolt me back to reality.

There are still many suffering in silence everyday. For as dramatic and as real as this caregiving journey is, it is also deeply personal and unique. Since no two special needs persons are exactly alike in their condition and accompanying challenges, no two caregivers will have the same experience either.

Which makes the empathy harder to dole out in exactly the right proportion, the way you will more accurately dole out, say, ten millilitres of a cough mixture the doctor prescribed.

Where’s the blessing?

family bonding during quarantine
Photo by Elina Fairytale on Pexels.com

When I joined a fellow stay home parent on a podcast episode recently, we were interviewed about our special needs caregiving journey. Something the other parent said still rings in my ears today.

She said in reassuring tones that we were not given our special needs kids as a “punishment”.

When I heard that, I knew what she meant immediately, because there were days when it felt for me like it was nothing BUT a punishment! Days I’ve blogged about before and will likely continue to in this, my raw and unfinished journey with my son.

So to that father who wrote that gut-wrenching message, though I don’t know you, I hope you know that you’re not alone in how you feel.

And as I said by way of parting words on that podcast, you don’t have to feel alone. Like me on days I feel like calling it quits, reach out to someone who will listen. Seek if you can professionals and fellow parents who can journey with you and help you when you need it most.

There are Davids out there for your Goliath. And through them, maybe just maybe you can rediscover afresh the blessing that is your son.

Especially on days your emotions are a mix of sorrow and dread, mirroring again that text you wrote.

One thought on “Daily living with autism #5 — on days it feels like anything but a blessing

  1. Chronic pain – physical, psychological, relational – can be so consuming and dividsive. Thank you, Kelvin, for respectfully and skillfully designing your blog to draw readers like me into better understanding of this daily challenge caregivers of all types face day after day..

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