Sunday, 19 March 2017

When does accommodating become enabling?

Before you jump to conclusions, our home is an autism friendly household. We have trampolines, wobble cushions and exercise balls galore, sensory toys in every room and we pride ourselves on having relationships built on mutual trust and respect. Accommodation is something we have DOWN.

That being said; at what point do those accommodations, by which I mean any of the things you or I or any other carer of a person with additional needs do, consciously or unconsciously, to adapt the environment to fit their loved one's or their own additional individual needs, become more of a hindrance than a help?

To start, I'd like to take a look at the difference between short term and long term aims. This could be applicable to most situations, any person (including you, the reader). Often, I find my short term aims are actually interfering with my long term aims.

For example; in the short term, I'd like to clean the house as quickly as possible so I've time for other jobs; perhaps pursue some leisure activities if time permits. Long term, I'd like housework to be at a level in which I can keep on top of it without dedicating whole days to cleaning one room and without having periods in which it borders upon uninhabitable.

The short term solution would be to do a quick, sloppy job and leave the things that can wait until later. Then later comes along and I'm still struggling to juggle time, so I do the same thing the next day. It becomes a cycle that ends in me having to spend hours, days, WEEKS even, trying to sort through all of the jobs I left 'til "later" and I begin to feel negatively about cleaning anything at all, as it seems to take so long and it's such an enormous task each time; and the bits I do in between don't leave me feeling like I've really cleaned at all, it's more like a band-aid, with the pressure mounting each time).

To focus on the long term goal, I'd need to dedicate some serious time first to focus on cleaning each and every room in it's entirety, then schedule time each day to keep on top of daily tasks and tackle the larger cleaning projects on set days of the week. Turning this into a regular, predictable routine helps prevent mountains born of procrastination, eases anxiety around starting new tasks and keeps the household running smoothly, leaving me physically and mentally free to take on new projects.

Image courtesy of Good Housekeeping

Leaving behind the cleaning analogy; each time we forget the long term goals, for ourselves or our loved one (to be able to make healthy/good choices, to learn new skills, to work on distress tolerance and personal safety, anything to get to the point of being able to experience the world and all of the adventures you know are waiting out there) and focus on the short term (keeping them/yourself calm or happy at all costs, making things "right" or fixing everything instead of simply "making do", getting through the day without tears), the long term goals begin to slip beyond reach.

Image courtesy of cpeay at photography-on-the-net

There's a fine line between making our loved one's lives (or our own) less frustrating by letting things slide, avoiding conflict and giving into pressure or guilt, particularly when faced with a situation within our control, and holding them or yourself back from developing vital coping skills and learning to accept situations for what they are.

You can not control life. Life can be unfair, life can be cruel and there are absolutely no guarantees... aside from death. Death, as it turns out, is a subject I've dwelt upon quite a number of times now. With 5 children, a partner and both of our respective parents still living, I'm almost certain to lose at least one of those people in my lifetime. Then there's my own death; I could be a walking timebomb and I wouldn't know it. I could die tomorrow, or 50 years from now; I could even live to be 100.

Without guarantees, though, I'm stuck with the knowledge that I could leave our boys behind; sooner rather than later. Who would do what I do for them? Who would know them so well, read them like I can? Who would bend over backwards for them, the way only a parent could? I have no way of ensuring that what they experience and expect from life right now will continue to be. How could I, or anyone, know a future that exists without them?

So, I consider this and I know that those long term goals are important, for them and for me. I know that, as much as life is about enjoying the moment, that's not all there is. We need to move forward; it's who we are and it's how we thrive. Stagnation brings about an awful pain, lethargy and a loss of lustre for life. It disables and limits a person in a way that's almost impossible to break free from or accommodate. The longer we stand still, the more rigid our lives become; the more fears and compulsions control us. The sick thing is, it lulls us into believing we're making the right choice; it soothes us into a false sense of security and we begin to depend on meaningless rituals and cling to our safe places like a comfort blanket; we become imprisoned by our own minds.

Image courtesy of Blacksmiley at Art Corgi

That same trap can also await children; although routine can be helpful in creating stability and improving memory, absolute rigidity around routine and rituals can teach a person to have unrealistic expectations and become increasingly dependent on the world inside their home, where things are predictable. It can intensify the belief that rituals keep them safe. It can confirm those beliefs, even. If the whole world stops for you when you say you need to compulsively count the tiles, is it accommodating you or is it agreeing and further perpetuating the belief you already held that you NEED to count those tiles to feel "right" again. The mind is a powerful tool. OCD can be absolutely crippling and, the more you act on the compulsion, the stronger the belief becomes that it helps and the more vital the ritual becomes. Can you see where I'm going with this?

Just this week, a fellow group member on a popular Facebook group for parents of autistic children began a post expressing her frustration that some parents of autistic children seemed to use their child's diagnosis as an excuse not to hold them to any expectations whatsoever and allowed their children to harm others, be rude/verbally aggressive and not intervene. Many people agreed, arguing that autistic children may need to be taught differently, but they can be taught basic rules at minimum and wouldn't make any progress if they weren't allowed the chance to work through their feelings and learn about boundaries instead of being left to it. Some disagreed vehemently and made assumptions about the poster's experience with severe autism, criticising her opinion's as being ignorant. 

A comment on that thread jumped out at me; written by the lovely Nona Melkonian, with whom I had the pleasure of chatting with in the group and who kindly agreed to allow me to share her story, to put it far more eloquently than I could:

"I made a post about this several months ago. And I'll admit, I was this parent for a while. Here's my previous post:
I've been spending time and growing closer to a friend of mine who has a child with special needs. Her boy is 9; older, has a slightly different diagnosis than mine but is, too, on the spectrum. He is a very sweet and fun loving guy and, despite the 6 year age difference, loves to play with my son. They get along beautifully and the two of us mamas have been getting along nicely, too. Well, until recently. 
She made a comment to me during one of our play dates with our boys that I found offensive. And now I am beginning to wonder whether my reaction to it was premature and if I was being overly sensitive. And perhaps, she may have even been right. Unsolicited parenting advice from strangers or other parents can be annoying, but parenting advice from another special needs parent is golden. And yes, we all parent differently and our kids may be on the opposite ends of the spectrum, but our journeys are similar. We all struggle, we all advocate, and we all celebrate those small victories. 
Here's what she said- "Don't baby him so much. You really are at his beck and call. You've got to see him for what he is, and not for his disability". Immediately, I got flustered. "I don't see him as a disability", I reinforced. We were quiet for a moment. Several moments. This was when I expected her to apologise. She didn't. Instead, she began explaining further. I'm not sure what she said because at that point, I really wasn't listening. All I understood from the statement was that she questioned my love for my son. And she didn't understand my journey or my struggle. Now, I am beginning to question that notion. And maybe that's not at all what she was saying. And maybe she was even right. 
I give him excuses. I give him passes. And I shiver and shake at the sight of every trigger, desperately attempting to avoid the meltdowns. "I want a lollipop, mommy. No. I want the red one. I want the red one!" What usually happens next is meltdown city. He loses control of his body and seeing him in this broken state hurts my soul. I try my best to remain calm, but I die inside. My heart beats a mile a minute and my brain scatters about everything I need to be doing differently to fix it. Where the hell can I get the red lollipop? I need the red lollipop now! 
This is wrong. All of is. And my friend, with nearly a decade of special needs experience, is right. Maybe her delivery was wrong. Maybe her word choices were poor, but she was right. We can not be at their beck and call simply because we want to make their lives "easier". This approach will not make it easier. It will make it harder for both them and us. They will become more rigid in their ways and grow completely dependent on us, and we will live our entire lives in fear. Fear of the meltdown. Fear of the "oh no, it's happening".
Well I refuse to live in fear. I refuse to see my son as a condition. He is very capable and very smart. And I am guilty of making his life too comfortable. I do this because I don't want him to struggle any more than he already does. And that is simply not the right approach. The right approach would be to give him that gentle push. The same push that he got in speech that helped him speak. The same push that he got in ABA that helped his behaviour. The same push that he got in OT that helped him adapt to different stimuli. 
With that gentle push, they are better adjusted to this big world. With that gentle push, they are more confident in themselves. With that gentle push, they thrive. 
Calling my friend now to apologise and let her know that she was so very right."

So, where do you draw the line?

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