Help-less, not Helpless

It’s Friday morning; one more day and another busy week will come to a close. I look forward to the weekends, as many of us do. It’s when I get a couple more hours of shuteye without interruption, when I don’t have to wake up too early to get a jumpstart on a long day. On weekends, we usually get breakfast to go for the kids and that, by itself, feels like a rewarding treat after a long, hard week. Compared to weekdays, weekends are not as stressful, although they can be just as physically taxing. The time when we spent Sunday mornings in bed doing nothing is a time long gone.

We’re surviving these help-less seasons in our household strongly, something no one would ever have thought possible in a household with autism. In a country where domestic help is legal and available, our family is one of the few who have decided to do things our way. In this case, everyone pitches in and everyone pulls his or her own weight. Not even Alphonse is exempted. Of course, we’re dead tired at night but the house is clean (somewhat, haha), our bellies are full, and Alphonse is almost always happy. That, by itself, is already big change.

When I injured my neck in 2009, I had a lot of difficulty moving my upper extremities. Back then, I couldn’t lift my arms, my hands were thick and numb, and my neck stayed uncomfortably bent for months. I couldn’t do a lot of things that I used to do. I was suddenly very dependent on others to help me with activities of daily living. My husband took care of me when he was at home but when he was at work, we needed more help around the house, people who would care not just for Alphonse but for me as well. Thankfully, my neck got gradually better over a two-year period and I was able to take over some of my previous chores again.

The nannies stayed because Alphonse fell in love with them. They became his lifelines to the world and having just lived through my “limited participation” in his life, we didn’t want to take away any of his emotional and physical security blankets.

In time, however, they all said goodbye to make new lives for themselves. We looked for replacements to help with Alphonse but none worked out. We went through a succession of people before we finally decided to quit the cycle. By then, we noticed the emotional toil this revolving door of nannies left on Alphonse. He was, in turns, self-injurious and highly aggressive, unable to trust anyone, not even us.

In the many months since then, we’ve overhauled how our household works, splitting chores among the three of us and assigning simple tasks to Alphonse (mostly clean up scut work and removing laundry from the laundry wash line). Over time, we also reestablished a new relationship with Alphonse. Today, Alphonse is thriving under our care. He is expressing himself more, and for a nonverbal fellow who is used to using his burly brawn to get his way, it is quite a feat. We haven’t had to use the wrap/restraint his previous caregivers employed for meltdowns (knock on wood) and I think that’s because he feels more secure with us around him. He knows we are always here for him. We don’t put him off for a cellphone call or Facebook. We kiss him more, hug him more, and just love him more.

Lest you think I make it sound so easy, allow me to disabuse you of any rose-colored notion. Being without help isn’t so bad really; any full-grown adult should be able to fend for himself. But when autism gets thrown into the mix, it becomes quite a different thing altogether. Think about having an overgrown man-child constantly needing you, demanding one-on-one time, requiring 24/7 supervision, and think about how one can only do so much in a day and within limits, and you can maybe scratch the surface of what we live with autism.

The truth is, most nights, we are dead on our feet and running on empty. Some nights, even rest isn’t possible as Alphonse occasionally finds sleep elusive. These are the moments that test our patience and strength. When most everyone would be willing to throw in the towel and give up, we draw on our rediscovered sense of unity to help each other get through one more night. And one more day. And maybe just another night again. And so on and so forth.

I guess it’s true. You never really know how strong you are unless you are tested and pushed to your limits. And knowing that, I don’t think we can ever call ourselves helpless again.

Alphonse says hello! ❤️

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2 thoughts on “Help-less, not Helpless

  1. It is nice to read this strong update.
    What are your plans for Alphonse as you and your husband grow older, and no longer able (or available) to care for him? Is there any system for disability care in the Philippines, government or private sector? Any group housing, set up by families with similar situations?
    We are also an autism family parenting a teenager, so we parents are not as young as we used to be, so this question is in the front of our minds. We cannot place the burden of care on our child’s sibling – who knows what their situation will be?
    Thank you.

    • We don’t have organized care or housing for adults with autism- or any other disability- in my country, S. A few organisations have started to raise funds for communities that will house/care for individuals with autism, but even with funds donated by private persons, the family will have to pay some sort of maintenance fee. It is a steep price, especially when one considers that the amount is easily more than an ordinary person’s monthly salary. Also, until these are set up and running, there is no assurance that these can accommodate our children, particularly those with behavior issues. I think at this point, we have reconciled ourselves with the reality that we will have to scrape the money for Alphonse’s upkeep, and that primary decision-making will be relegated to his brother. There is no other way. When the time comes, however, that our eldest son is unable to care for him, we will not begrudge him his decision to place Alphonse in future housing. We need to come up with the money to make sure this is possible. It is sad, but this is our reality.

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