Daily living with autism #11 — Is grief love persevering?

boy in white long sleeve shirt playing puzzle

This week, I was surprised by grief.

I know that sounds rather ridiculous. Maybe even disrespectful though certainly, that’s not my intent.

The funny thing was I didn’t even expect to feel that way at all!

So what happened you ask?

A steep learning curve

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Regular readers will know I have two sons. The youngest was diagnosed with moderate ASD (Autism Spectrum Disorder) five years ago.

Since then, it’s been a steep learning curve for everyone at home to figure out how best to care for him and his special needs.

Not that the curve was ever smooth.

Since birth, my boy C has been a challenging kid to raise and take care of. So the official diagnosis we got in December 2017 felt more like a formality than anything else. We were already in the thick of managing his different “quirks” which I’ve posted about in various past writings on this blog (do click on the Autism tab on my blog’s home page to check them out).

The long and short of it all is this: C will always take longer to master basic living skills we all take for granted.

It’s the same when it comes to academic matters. And many-a-times it can be downright hair-tearingly frustrating!

Just read my last post in this now not-so-mini series!

“C’s daddy, your son’s going to P5 Foundation next year.”

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This year in particular has been a very challenging one with C’s schoolwork.

Of course, one would expect each new school year to bring on more challenges in terms of learning harder stuff. Then again, the student is also a year older each time. This means the kid should, logically, also be better placed to tackle said challenges.

With C however, logic and convention don’t apply.

And it doesn’t help that life often gets in the way of us rendering undivided attention to help him catch up with his school work, tests, and exams.

In many ways, as his dad, I hold myself accountable and complicit in allowing his struggle to persist this past year. As an educator myself, surely I am best placed to find the right ways to help him right?

But self-blame now is useless, or so I console myself. It won’t change the reality that, based on his mediocre results from the recent exams, the school thought it best C goes on to what they call a Foundation rather than a Standard level next year.

That’s where the pace and pressure of studies are a lot more manageable for kids like him. And given that he’s already in a special needs school, this decision speaks volumes as to what he’s not capable of!

So when that news was announced four days ago, I ought to have felt nothing but a sense of relief.

Instead, what I felt was…grief.

What is love but grief persevering?

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In a scene from the penultimate episode of the Marvel/Disney+ series WandaVision, Wanda the Scarlet Witch recalled a past memory when the synthezoid being Vision comforted her (as she mourned her brother’s death) with the following entreaty:

“It can’t all be sorrow, can it? I’ve always been alone, so I don’t feel the lack. It’s all I’ve ever known. I’ve never experienced loss because I’ve never had a loved one to lose.

But what is grief, if not love persevering?”

I’m not too sure I fully understand that last bit.

Does it mean when I grieve for someone, it proves I love that someone?

But I don’t want to grieve or mourn. I don’t want to weep and fall apart.

I want to laugh, sing, and rejoice by way of expressing love! Grief feels so painful, almost like a hit to one’s solar plexus.

Who wants that?!

And yet as I look back all these 11 years with C, it’s true there were many moments I felt like I’d been sucker-punched! Each time we watch him struggle with daily tasks we take for granted, it’s truly hard not to get choked up.

Tasks such as buttoning his shirt or managing his toilette and bath.

Finishing his meals unaided. And under an hour.

Tidying up.

Writing legibly.

The list goes on.

So many moments to grieve.

Is that my love for him persevering?

Grief begone!

man in blue and brown plaid dress shirt touching his hair
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It feels at times more like torture. Pure, unadulterated torture.

Which parent wants to grieve without an expiration date in sight?

Again I find it funny. I should be cheered by the school’s decision to place him in the Foundation track. Given the fact he’s struggled this whole year — and us right along with him — this is a welcome respite.

Now he can take on the curriculum in, hopefully, a more palatable fashion. He’ll have more targeted help as the syllabus is adjusted to suit his slower pace of learning.

So why am I still grieving inside?

Am I still expecting that somehow his special needs will step aside so he can be “like everyone else”? That he can finally catch up and be “on par” with the rest of the world one day?

Maybe he can indeed. With the “right” help. Yet I have to wonder what or if there is such a thing. And we’ve gone through enough hoops all these years for me to feel this musing, this wondering to be nothing more than an exercise in futility.

The bigger issue here is whether can I find it in myself as his dad to simply accept that this is C’s life journey. And that all he asks is I love and stay with him on it for as long as I’m alive.

Would that be a better expression of “love persevering” than this “surprising grief” I felt this past week?

Only time will tell.

5 thoughts on “Daily living with autism #11 — Is grief love persevering?

  1. living with a special needs individual is sometimes hard to accept especially when you see them taking longer or being unable to perform simple tasks that most people can. it is a pang of grief, disappointment and frustration all at once. but after a while this reality gradually sinks in that they will never be able to match the pace of progression that we expect of them nor will they ever be able to catch up to many others their age and we slowly have to alter these expectations and learn to make smaller milestones for them. as a sister to a brother with downs syndrome, i have struggled and tussled with this reality many times over the past 13 years but slowly i think i have come to terms that he is who he is and that there is no need for me to pit him against other children his age.

    1. Couldn’t agree more! Thanks so much for visiting and sharing your heart. Let’s keep supporting our loved ones every way we can and never lose heart!

  2. My son is 25 and he can be quoted severe and we had accepted that years ago and yet there is the pain. When his younger brother who is 7 years younger to him got a driving license I felt severe knot in my stomach. I felt jealousy over my own other kid. So what you experienced is normal. On a positive note my son has friend/brother who can accompany him alone to mall and they both can do things together without our help.

    1. Thanks for visiting and sharing this encouraging testimony with me. Yes there are always ups and downs in this journey which I’ve come to accept though sometimes it’s still hard. By God’s grace may we all continue to soldier on as the special parents we are because of our sons! Take care!!

  3. Nearly 45 years ago “The Road Less Traveled” was published. You are doing a remarkable job engaging the readers of your blog into what might be called the “The Road Not Chosen but Received”. I know I am not alone in expressing gratitude for you and your wife putting the words of I Corinthians 13 into action: “Love Never Ends”. Appreciate your transparency and thoughtfulness very much.

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