Tuesday, June 10, 2014

Why I Haven’t Mowed My Lawn: Sensory Regulation As A Neuro-Physiological Need


In speaking with a family member the other night, we were discussing some of the activities that my husband and I, along with our two kids, had participated in the week prior.  Of these, I mentioned that we had taken the kids swimming four times in six days and how this had left me pressed for time in terms of completing other tasks around the house.

My family member surprised me by saying “Yes, well that’s your choice though. It’s about the priorities that your family sets. Which is fine. You guys have prioritized spending time together over mowing the lawn.  I’m not saying it’s a bad choice- but it is a choice.

I was taken aback by this response.

Firstly, I very rarely ever complain or vent about some of the struggles that we have in our lives. I am deeply aware of how how fortunate we are to live a life of privilege and comfort. I see it as a responsibility to my children, and to society, to make the best of these opportunities, to give back when I can, and to focus on the positive as often as possible.

So, while it was not intentional, this response felt strangely condescending to me. Of course, like every one else, I realize that our priorities dictate our time. I wasn’t saying otherwise. I was simply saying that sometimes these priorities made it difficult to attend to the every day things, and that I sometimes find it hard to catch up.

But more than anything, it was the implication of the word ‘choice’ that bothered me.  While I do appreciate the privilege of being able to do things that meet my Autistic child’s needs, I do not see these things as being ‘choices’ as much as I see them as being imperatives and responsibilities.

Let me explain:

We go swimming at a very specific pool, in a neighbouring city.  The drive is 20 minutes there and 20 minutes back. It takes us at least 20 minutes to get Sammie (and Charlie) into the pool, and at least 20 minutes to get them dressed and back to the car. Quite often, we swim for about forty-five minutes.  Sometimes, when time allows, we will stay closer to an hour or even an hour and a half.

But sometimes we are in the water for a grand total of 15 minutes before the balance tips away from the ‘benefit’ mark and too far towards the ‘cost’.  And we are never able to predict when this tipping will occur.

So, four to six times a week, we head out to the pool. 80 minutes of prep time for a potentially 15-minute long swim.

Sounds fun, right?

If you answered “not so much”, then you and I are on the same page.

But we do it anyway. Usually after long days of work and despite the many hours of housework and every day grown up duties ahead of us, we find the energy to trek both kids off to the pool.

{Image is of a preschool aged, male presenting child
who is looking at the camera and is wearing
a life jacket and swimming in deep water.}

So, why do we do it if it isn’t fun?

Because we don’t go swimming for fun.

Sure, we do usually have fun while we are there, but fun is never the primary goal of the activity.

We go swimming because it is an integral element in Sammie’s sensory diet, and his sensory regulation is considered a basic physiological need in our lives.

Sensory diet trumps mowing the lawn, even when the lawn is so long that I'm embarrassed to see my neighbours on the sidewalk. 

During my university days, while studying sociology, I often encountered Maslow’s Hierarchy of Needs. Now, as the parent of an Autistic child, I have become reacquainted with it through various training seminars and readings.

The concept is relatively simple. The hierarchy represents various levels of human needs: 1) Physiological, 2) Safety, 3) Love and Belonging, 4) Esteem, and 5) Self-Actualization).  Maslow’s theory was that the most basic of these needs must be met in order to create motivation for the other needs to be met.

{Image is of Maslow's Hierarchy of Needs pyramid. There are five categories in the pyramic. 
The bottom category is named "Physiological" and is orange. It includes the words: breathing, food, water, 
sex, sleep, homeostasis, excretion. The second category from the bottom is red and is named"Safety". 
It includes the words: security of body, employment, resources, morality, the family, health, property. 
The third category from the bottom is green and and is named "Love/Belonging". It includes the words: 
friendship, family, sexual intimacy. The fourth category from the bottom is purple and is named "Esteem". 
It includes the words: self-esteem, confidence, achievement, respect of others, respect by others. The top 
category is navy and is named "Self-Actualization".  It includes the words: morality, creativity, problem 
solving, lack of prejudice, acceptance of facts.}

So, before you can reach your full potential as a human being (self-actualization), you must first be nourished (physiological), have a sense of financial security (safety), and feel like you are part of an accepting community (Love and Belonging) and feel a sense of self-worth (esteem). Only then are you able to focus on your inner self enough to discover what makes you ‘tick’ as a human being.

Makes sense.

Despite being slightly simplistic (particularly in terms of the fact that many of the processes overlap and interact with each other in a way that is not accurately portrayed by the conventional pyramid model) Maslow’s theory does provide us with a concrete understanding of how some of our needs break down and rank themselves in terms of their fundamental importance.

In the Maslow model, the "physiological need" is the most important set.  These are the requirements for human survival: food/water/air, homeostatis (body temperature regulation), shelter from the elements, and sexual reproduction (which refers more to the species as a whole than it does to an individual’s needs).

You need to do the things you need to do to keep yourself alive.  

It’s a relatively simple concept, right? Common sense, yes?

Yes.

And no.

For some members of our population, these fundamental needs aren’t easily met. As we know, poverty, geography and social conditions can all tremendously impact our ability to access basic fundamental human requirements like food, warmth, and clean drinking water.

But there are other factors that are often forgotten about when it comes to discussing access to physiological needs, including the one that impacts my family the most: neurophysiological processing.

Yes, sometimes the brain itself makes it almost impossible for these basic needs to be met in ways that are easily accessed by large chunks of our population.

This is often the case for many people with Sensory ProcessingDisorders (SPD).

And Sammie is one of them.

Put simply, Sammie’s brain doesn’t process sensory information (sight, hearing, taste, touch, smell, equilibrioception, proprioception, nociception, and thermoception) in the same way as most people’s brains do.  In some ways, particularly thermoception (receiving temperature information) and nociception (pain reception), Sammie is under responsive and requires more information than most people to feel the effects of cold, heat, and a bonk on the head.  He also seeks out more physical information that most people, choosing to use his body to explore the world by jumping, spinning, running, and balancing himself whenever possible.

However, in most ways, Sammie is hypersensitive.  Tastes, textures, lights, sounds, and touch all feel significantly more intense for him than they do for others. A pungent smell that might make us slightly uncomfortable can actually be painful for him.  New sheets that feel slightly rigid for us might feel like sandpaper to his skin.

Sammie’s sensory differences affect his entire life, and when he is dysregulated (ie: over or under stimulated), he has difficulty performing even the most basic human functions including eating, sleeping and even excretion (toileting). 

When Sammie’s sensory system is off, his entire physiological world falls apart.

So mapping out Sammie’s sensory needs and planning out a carefully executed sensory diet has been the main focus of our parenting/therapy journey for the past two years.  Thankfully, we are now at a place where we are able to interpret his body signals and respond accordingly with sensory stimuli that meets his neurophysiological needs.

Deep pressure hugs and compression style clothing.

Dimmable lighting, and nest-space in almost every room.

Swings, trampolines, exercise balls, and fidgets.

A 500sq/ft area of the house built to meet his sensory needs.

{Image is of a preschool-aged male-presenting
 child  with blonde hair, who is looking at the camera
and is sitting in a gray and red cuddle swing.}

And swimming. Lots of swimming.

Yes, sometimes we can sub out a bath in our deep lounge tub for an actual swim session, but it’s just not as effective.

Nothing regulates Sammie’s system better than full body water immersion or "aquatic therapy". It provides 30X more deep pressure than air. Beyond that, it provides a vestibular imput that can not easily be replicated in other ways. Swimming is a full body exercise that engages all nine sensorial experiences.

And Sammie loves it.  Which makes it a double win. So does Charlie. And generally we love it too. Spending time with our kids is never a chore. 

Unfortunately, like everything else, the pros of swimming have to be carefully balanced against the cons. Many swimming pools offer sensory environments that are difficult for him to process. Harsh lighting, cold air, loud noises, limited space- all these impact him in ways that can’t necessarily be mitigated by a good dip in the deep end.

This makes the pool down the block inaccessible to us. The one a ten minute drive away is the wrong fit too. We have to go to another city to find a pool that works for us. It is almost perfectly suited to our needs, and it has a staff that gets us (which is worth its weight in gold). It is well worth the time and gas to get there.

And, like I said, we generally enjoy the experience.

But we enjoy it in a way that most people enjoy dinner together. It is pleasant, and pleasurable and we have made an event out of it. But eating is not ‘choice’- it is a life requirement.

We all need to eat, so we make it as enjoyable an experience as we can. And we all utilize our ‘choices’ and ‘priorities’ in doing so- to the extent that we are able to do so. Every family finds an eating routine that works for them, and no two routines are quite the same.

And yes, many of us live very privileged lives when it comes to what we eat and how we do it, while others are significantly less fortunate, through no fault of their own.

The simple act of eating is a luxury not afforded to many in this world.

But that doesn't negate the fact that eating is a need. It is not a choice.

Likewise, meeting Sammie’s sensory needs with swimming (and the other countless activities and routines that we utilize on a daily basis) is a need. Without it, his ability to sleep, eat, and function properly is significantly reduced.

When we skip swimming, we see the effects in numerous ways, some of which are downright dangerous. So while we may not need to go every day, we have learned the mistake of not going at all.

Swimming is a need. 

In fact, one could argue that- in Sammie's case- meeting his neurophysiological needs is an even greater imperative than meeting the rest of the needs because of the effect that it has on his total body functioning. 

So while we are fortunate that we are able to meet his need in a way that allows him to thrive, and while there is no doubt that we are simultaneously meeting needs for security, love, belonging and even self-actualization, let there be no question about the fact that accommodating Sammie’s sensory needs is a biological imperative. If it wasn't swimming, it would be something else just as time consuming. 

To fail to do so would be akin to failing to feed him or provide him with proper sleep.

Sensory regulation is a need, not a luxury.


It is not a choice; it is a parenting responsibility.

One that we take very seriously because our child's health depends on it.

And that's why my lawn isn't mowed this week.

9 comments:

  1. Thank you for this - it's a terrific explanation for why I moved into a building that has a pool and that this wasn't a "decadent" choice on my part but one based on need. Something else I'd like to add - our kids' sensory needs are there all year round. Where the boys and I live in Canada it's typically incredibly cold in winter and incredibly hot in the summer. When you don't drive and your children are sensitive when it comes to extreme temperatures, having an all-weather sensory activity that's easily accessible is pretty close to being vital.

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  2. This actually brought major tears to my eyes. Part sadness, part admiration and part, ahem, rage. I am SO ANGRY that in any way you should feel the need to justify yourself to ANYONE when it is clear to someone who knows the tiniest bit about you and yours that you are a warrior.
    A lot of this information is super helpful in the parenting arsenal, sure, and I do thank you for that...but will people who make such comments about "choice" and "lawns" even benefit? No matter -- the rest of us will!
    Love,

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  3. Thank you for this. And F the lawn. The bees need the weeds to live, anyway.

    May I link to your blog on a website I'm creating? It's purpose is to be an easy-access doorway for parents of autistic kids to the words of autistic bloggers/autistic parents/neurodiversity parents.

    Thank you very much for your words and for sharing your experience.

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  4. Wow! So well said! Meeting our children's sensory needs is part of our responsibilities as a parent, and certainly rates higher than the lawn getting mowed in a timely manner. I also liked your comment about the "cost" versus "benefits" of staying at the pool past the tipping point. Sounds like you are tuned into to your kiddos and their needs. Keep it up, Mama!

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  5. I'm glad to hear there are other moms who take parenting a special-needs child seriously. I felt the same way about going to 4 hours of therapy a week with my autistic son. I didn't do it because it was 'in' or 'cool' or because we had money to burn (we didn't). I did it and sacrificed a lot of my life to make sure his is the best possible life he can have. Bless you for your efforts!!!

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  6. Good for you! I get tired of the condescending attitude towards us too at times because it is often tough to understand that our actual survival needs are not being met when we are overwhelmed and feeling unsafe. Keeping strong boundaries for our family has been very important:)

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  7. So well written! I hope this reaches people who don't yet understand or who haven't yet heard this before.

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  8. HOW I WAS CURED TOTALLY FROM AUTISM
    I had my first attack of (AUTISM) when I was a kid, I wasn't diagnosed until 27 years later when I was totally experiencing speech delay. It was so terrifying that I began dropping things and losing sensitivity to sounds, having severe fatigue and muscle weakness. A horrible poor eyes contact began. I sometimes can't walk straight and fall onto walls and I get leaning disability, the English medications i used proved abortive. i was so frustrated that i had to contact My neurologist,he told me about a new RRMS (relapsing-remitting MS) drug which was only in its trial stage, CAMPATH. I started the chemo-type treatment and some prescribed drugs like: RISPERDAL, EFFEXOR XR, GEODON and MEMANTINE. which resulted in 1st seizure of my life, thereby adding more salt to my injury. As a result to proffer solution to my problems, i started going online in search for a cure, i came across a testimony of a woman who got her son cure through HERBAL MEDICATION, at first, i doubted because of the misconception that autism can not be cured. But i later contacted the Doctor through the email provided, and I used his Herbal product, after 1 month of use, I noticed tremendous improvement in my health, 5 months after, I can proudly say, I've been totally cured by Dr.williams Herbal Medication from AUTISM..., If you have the same health issue, you may contact him for a total change of story, Via: drwilliams098675@gmail.com . I believe your predicament will be a thing of the past just like mine

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  9. Wow just wow!! So perfectly explained.

    For so many years I’ve felt deep down I was making the ‘right’ parenting decisions, but couldn’t quite find the way to make others understand why the dishes weren’t done, the house was messy or the lawn wasn’t mowed..

    Every hour of every day I’m faced with a so called ‘choice’. Vacuum or pile up mattresses so my daughter can meet her SPD needs by rolling....weed the garden or build a cubby for my daughter, de-clutter or take my daughter to the playground, mow the lawn/mop the kitchen or bounce on a trampoline with my daughter?

    Other aspects of life as a husband and father have similar responsibilities too...talking with my son for 30 minutes about an emotional or passionate topic he is involved in, or folding the laundry...helping my CFS suffering wife make dinner or working for another hour?

    I ‘chose’ to fold laundry once and my son looked depressed the next day. I ‘chose’ to work for an extra hour once and my wife feinted in the kitchen. I ‘chose’ to mow the lawn once and the grass grew straight back, but my daughter won’t forget the hyperventilating, crying and frustration she went through that night.

    These are not the shoes we chose to walk in, this is the path we have been presented with. We do have ‘choices’...responsible ones and irresponsible ones.

    Thanks for this great article 👍

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