Get Ready...Get Set...Blog!

It's that time of year again: The Summer Blog Challenge.

A blog post a day for 31 days straight. If it sounds easy, trust me, it isn't.

If it sounds entertaining, trust me, it is.

As hard as it is to believe, this will be my fourth summer completing the challenge. That's part of what is bringing me back to it. The first time I did the challenge, back in the summer of 2011, Sam was still barely even a toddler. Now, looking back over the blog entries of the past, I can get a picture of where I have been, how I got there and where I am ultimately going.

Journaling is a fascinating experience of self-discovery.

I won't (and can't!) promise that my posts will be thoughtful or provoking- though I do hope that at least one or two are.  I also don't promise that they will be thorough, well-edited or even spell-checked. I write generally in a free-style on this blog- more with the intention of getting the thought and idea out of my mind than with the intention of doing so with flair, grace, or attention to grammar (though these are things that I am working on, slowly but surely).

What I do promise is that I am going to take the challenge seriously and really push myself to explore some topics that have been nagging at my mind this year; and, trust me, there are a LOT of them.

So hopefully you'll join me on my #SBC2014 challenge and we'll see where the summer winds take us.

The longest response to a comment ever...

A thoughtful comment was made on my last post.

The text of the comment from stillfinditsohard (a blog that I have followed for some time) has been copied verbatim here:

"I wrote at http://wp.me/s2iISl-pardon about this admittedly important but much shorter than it needs to be step. I think it is worth the effort for both your good self and your audience to read what I have to say.

Patting the back of Build-A-Bear when they appear to have only done half a job is not going to do us a favour. Okay, so you have one less (out of thousands) of reasons to fear for your child.

What about those of us who can and do speak for ourselves, and do not live in America? What about us? And that speaks to the most profound division there is between the "parent of a child with autism" bunch and us, the autistic. You get all the attention, we end up suffering because you either jump guns or fail to think through.

Build-A-Bear's severing of ties to Autism Speaks FNA is a good thing. But until they go out of their way to let _all_ of their customers know why, and sever all ties with _all_ anti-autistic hate groups, autistic people everywhere have no reason to celebrate.

The Irish political party that was essentially a part of the IRA had a name that was and still is instructive for the autistic civil rights movement. Sinn Féin, an Irish phrase for "we ourselves". Sam might be a small child now, but there will come a time when he is the same age that I am now.

Thirty years from now, the way in which parental "advocates" behave, the way the movement cheers at a job half-done, and the way the movement fails to understand we are essentially at war, will have people like Sam taking up the same cry. Autistic people want to be spoken for and about by only one group of people.

We. Ourselves."

My comment was too long to post, but I felt really deserved a thorough answer, so I have written it out here.

Hi Dean.

Thank you for taking the time to post. I have read both your comment and your post carefully, and think that you bring up many important points. I really would like to answer them, but first want you to know that your words, feedback and criticisms/critiques are welcome here. I have followed your blog for some time, and have nothing but the deepest respect for your words and opinions.

On to your comment:

You are absolutely right- this is only a small step on Build A Bear's part. I absolutely believe that they owe the Autistic community a public announcement and acknowledgment of fact that this corporate partnership was harmful and wrong.
In my post, I do call on them to do this and, as many others have also done, have reached out them to on their social media platforms and through their email. There is still work to be done.

However, as with all civil rights movements, it is important to acknowledge when steps are made- particularly when these are the results of grassroots efforts. We need to do this both for the offending parties to see that we are sincere in our efforts and genuine in our advocacy. We also need to do this for ourselves. There will always be a much larger fight to fight. But without celebrating the battles, and taking the time to lick clean our wounds, we will not have the resilience it takes to continue working. We have witnessed this with various civil rights movements across the globe. No one oppressed group has fully succeeded in escaping their oppression. Women are still battered and beaten. Racial minorities still discriminated against. The disabled still dehumanized. Rectifying these wrongs and building a better world is a continuous act that occurs in multiple fronts, parallel to each other and working in different ways.

You also raise some points about the Parent of Autistic Child vs. Autistic Person debate. I assure you that I agree with you 100%. It is saddening and tragic that the voices of parents are elevated above those of Autistics of all ages and all abilities. It is my absolutely intention to do everything I can to continue supporting Autistic voices so that mine can fade into the background, where it belongs. I have consulted extensively with my friend Autistic self-advocates on the conflict between wanting to help spread the message of Autism/Neurodiversity Acceptance (I fall heavily into the latter category) and wanting the Autistic message to be resoundingly and overwhelmingly stemming from the Autistic community. I firmly believe in "Nothing About Us, Without Us" and do everything in my power to elevate and amplify the voices of Autistic people when and where I can.

That being said, my son is four. And, like my daughter, I have a vested interest in protecting and defending his rights not only as an Autistic person but as a human being that I love and cherish. I do not (and have never) claimed to speak for him; despite, being non-speaking Sammie is quite capable of communicating for himself and we encourage this communication in any form that it takes.

As I commented on the TPGA page, my blog is a tiny one. I have no idea how to respond to this type of public attention. However, I do believe that if you take some time to read through the rest of my writing, you will find that I am rather consistent in my messaging regarding the role of parents in Autism advocacy. I assure you that I had no idea that my post would be so impactful or so heavily shared, and it was certainly not done so out of a desire for attention. I was simply trying to celebrate a small victory in my community, in the best way that I knew how. Sometimes, the battles matter as much as the war. I do not agree that this was poorly thought out or a 'gun jumping'- rather, it was seizing an opportunity to spread a message of acceptance in the best way I know how to and with the tools at my disposal.

In your post, you also take some pretty strong shots at the entire Boycott Autism Speaks page and group- a page that is run largely by Autistic self advocates who have dedicated their sweat and tears into this movement. I fail to understand what your issue with them is, but can assure you that their efforts have been unceasing. If you believe that there are less passive ways to go about advocacy, I would strongly encourage you to do so. But I would also encourage you to remember that both Malcolm X and Martin Luther King made waves in their movements, using very different messages, mediums and tools. They did not always see eye to eye, but they did both accomplish significant leaps for their community. Advocacy and Activism can take on many forms.

Finally, two points: I am keenly aware that Sam will be an adult one day. I am also keenly aware that I am doing right by him as a parent- I am not perfect by any stretch, but I am raising with love, respect, dignity, and understanding. He is thriving in every sense of the word, and so am I, through his direct influence. We are helping each other to grow and teaching each other wonderful ways of taking in the world. But I have *never* claimed to speak *for* him; not in this post and not ever. In fact, I have been extremely vocal about the fact that Sam speaks for himself. He always has and he always will. I am, at best, a translator- a poor one, oftentimes. It is my sincere hope that I will be able to help him discover tools that are significantly more effective at this than I am. We are currently working on introducing an AAC, and are only engaging in supports that are respectful, consensual and non-harmful.

The final point that I would make is this: I am not American. I am Canadian. We still have a lot of work to do here (and globally, as you pointed out) but thought I would clarify the assumption.

Open Letter to Build A Bear Workshop Founder, Maxine Clark

Maxine Clark, Founder
Build A Bear Workshop



Dear Ms. Clark,

I wanted to take a moment to introduce you to Lili, one of Build A Bear's newest furry friends.

Aside from being an adorable pug, she is dressed up in super hero gear and her heart is filled with courage.

Why is she a super hero?

Because she was built as a reminder of all the daily heroes out there, people who are making change happen in our world just by their very presence. She was built as a symbol of the ongoing crusade for human rights and as a beacon of hope for those who are still battling every day against bigotry, oppression, fear and hatred.

And she was built in celebration; celebration of the news that Build A Bear Workshop has terminated its association with Autism Speaks, an organization that has done tremendous harm to Autistic people across the world.

Autistic people like my son, Sam.

(Edited to add: for an indepth article examining the various issues with Autism Speaks, please refer to this post, written by my friend Michelle Sutton: I will not 'Light It Up Blue'!)

Sammie is a four year old, non-speaking Autistic child who is full of joy, wonder, and total awesomeness from head to toe. :)

And today, for the first time ever, Sam went into the Build A Bear Workshop knowing that he was walking into a space that recognized his humanity and his right to acceptance, dignity, and respect. He walked right in, built himself a bear, gave her a bath, dressed her in her super hero gear, and named her Lili.

As he chose his new friend's furry form, he scanned the wall, carefully taking in the dozens of colourful and interesting furry friends to choose from.

A wealth of options were available, reflecting, in a sense, the diversity of children themselves. Like each custom-made bear, no two children are exactly alike- and it is our differences as human beings that make us unique and exceptional. Each one of us has different likes/dislikes, interests, beliefs, values, abilities, skills, and personalities.

It is this very principle of diversity- that every child should be able to freely choose who their favourite bear will be- that inspired the Build A Bear vision and has allowed it to grow into the successful, international corporation that it is today.

Ms. Clark, your mission statement says it all:

"At Build-A-Bear Workshop®, our mission is to bring the Teddy Bear to life. An American icon, the Teddy Bear brings to mind warm thoughts about our childhood, about friendship, about trust and comfort, and also about love. Build-A-Bear Workshop embodies those thoughts in how we run our business everyday."

Friendship. Trust. Comfort. Love.

Are these not the very foundational principles that human happiness is built upon?

These are the things I want for my child, now and as he grows older.

More than cures, or therapies, or treatments.

I want him to find friendship. True friendship that accepts him for who he is, and encourages him to thrive- not in spite of his difference, but because of them. Friendship that lasts a lifetime and that changes his world for the better. This kind of friendship can not be prescribed. It does not happen by forcing him to be more 'normal'; it happens by creating a world that is more accepting of diversity and differences.

I want him to find trust. This does not happen by violating his personal rights, body and dignity. It does not happen by discounting his voice, and the voice of other Autistics, from the Autism dialogue. It happens by establishing that we, his parents and his community, will keep him safe from harm- harmful therapies and harmful ideas that wound the spirit. It happens by valuing that he has a voice, despite the fact that he does not use words. It happens by respecting that his right to human dignity trumps other people's right to comfort. Trust is an ongoing and fragile process, built upon an established mutual respect.

I want him to find comfort. There are many things in Sammie's life that will make him uncomfortable. There are things that will cause him pain. There are things that will cause him distress. There are things that will cause him fear. My role- my mission as a parent- is to find ways to minimize these difficulties and to help him manage the obstacles that he faces with strength, courage, conviction and a sense of self-worth. This does not mean "curing" him; it means supporting him and strengthening him. It means understanding that disabilities require a holistic approach and that our greatest responsibility is to do no harm- to not cause him or others additional pain in our attempts to "fix" things about him that are not broken. It means helping him become resilient, and always being the 'soft place' for him to land on when things get hard.

I want him to experience love. There are no words that could ever do justice to the amount of love that I have for my children. I will not even attempt to find them. But my vision for Sammie is so much bigger than just me. I want Sammie to find love everywhere he goes. And really, isn't that what most parents want for their children? I want Sammie's heart to overflow with love every minute of every day for the rest of his life. Love of others. Love for others. Love for himself.

And for that to happen, more people need to do as you and Build A Bear Workshop have done. More people need to stand up and say that to love someone is to accept them for who they are. That pouring money, time and energy into trying to find ways to 'cure', 'change', 'conquer', 'defeat' or otherwise 'attack' Autism is to tell Autistic people that they are not worthy of being loved. That they are not worthy of being respected. That who they are as human beings is not valuable.

Ms. Clark, as our family built Sammie's puppy today, watching him choose her name and squeal with joy as he gave her a bath, my thoughts were on you and your organization. On the good that I sincerely believe was in your hearts when you partnered with an association that claimed to be promoting a worthy cause.  Of the betrayal you must feel at knowing that this organization is really promoting harm and is doing so despite the resounding supplications of the Autistic community to change their ways. Of the anger you must feel at knowing that there are people out there who believe that Autistic children aren't worthy of love and acceptance based solely on the fact that they are different.

My thoughts were on this, and on all the work that you still have ahead of you to continue to undo the harm that has been done.

I am so grateful that Build A Bear Workshop has terminated this relationship. I am so grateful to know that the words in your mission statement are true and sincere; that you truly are committed to giving children happiness and joy. I am grateful, and I am hopeful that you will now seize the opportunity to become advocates for friendship, trust, comfort, and love for people of all abilities.

Sammie's new bear wears a superhero cape to commemorate the fact that total strangers can be super heroes in their every day, ordinary lives.

Today, Build A Bear Workshop became part of Sammie's super hero team. I hope you will continue to rise to the challenge and continue to earn your cape.

With deep respect and appreciation,

Sammie's mom.

3 stories, one day.

It has truly been a beautiful day. 

***

I pull up to the school just as the light gray clouds begin to collect overhead and drizzle a cool mist over the windshield of my truck.

They won't be playing outside on a morning like this.

That's a shame. My favourite part of the day is watching him play outside, fully unaware of me- of anyone, really- and completely enraptured in his final run of the school day. Sometimes, he has kicked off his shoes and is feeling the soft grass tickling his toes. Other times, he is darting in and out between the trees, speedily making his way the world in an eternal figure eight.

But not today.

Today, he will be walked out instead. Right at noon. Usually the last of his class, his hand gentle enfolded in the wrinkled hand of his kind aid. She will pass him off to me- his hand into mine- and I will ask him how his day was. I will hold my breath waiting for the smile that signals a day well lived. If it does not come, my heart will sink as I will know that he struggled.

Thankfully, the smiles come most of the time. School is a happy place for him. Sometimes, he is so overjoyed that his eyes ask to meet mine, and within that split second I am privy to all the wonderment and excitement that fill his mind.

His eyes tell me stories that no words could describe.

I see him at the doorway. The picture looks the same as it always has...but there is something different today.

I can't quite put my finger on it.

Yes, he is smiling. But that's not unusual. He is usually smiling. And still, something seems different.

It takes a second to register but when it comes to me, the impact hits me like a ton of bricks:

He is looking right at me. Through my window. He sees me here. He is not just happy. He is happy to see me.

I jump out of the car and make my way towards him, eager to greet him in my usual way.

But I am stopped short. Before anyone can stop him, he has torn his hand free of his aide's, and he is running down the path, arms outstretched, and heartily laughing as he crashes into my knees. He looks up at me, right into my eyes, and holds my gaze.

One second...two seconds...three seconds...

Still looking right at me, he lifts his arms for me to pick him up. And, when I do, he places his hand on my cheek, once again looks into my eyes and kisses my lips.

Hi mom. Today was amazing. I am so glad to see you. I love you.

And then he looks into my eyes again, laughs out loud and climbs into his car seat.

No words were passed between us. None need to be said.

His eyes tell me stories no words could describe.

****

The pool is quiet today. I love when we get to come early. The dinner time hour seems to drag away the crowd and we have the space virtually to ourselves.

I wonder what kind of swim we will have today. Sam has been in an exceptional mood, but seems tired after his short car nap.  Today might wind up being more of a 'swim therapy' day than a 'swim play' day.

That's ok with me. I love watching Sam play, but I do secretly covet those therapeutic sessions where he asks me to help him regulate himself with deep pressure water exercises. What masquerades as a 'joint compression' truly just signifies a whole lot of extra cuddles for me.

But no. Apparently today is a bouncy, stimmy, happy flappy play day.

And he is so thrilled that I can easily bear the pseudo-disappointment.

But there's something different about the pool today.

Today, he is not alone in his Autistic glory.

There is another boy, maybe eight, bouncing his way through the lazy river.

I've come to recognize Autism quickly in children. I suspect the numbers are higher than 1 in 68, and consider this to be a good thing. Neurodiversity is a powerful force of change in our world.

But we seldom see Autistic children at the pool. And never alone. When they are there, it is almost always there with an aide or a parent, cautiously hovering and anxiously looking over their shoulder.

Sam is crashing his way through the waves, soaking up every ounce of comfort and freedom that the water has to offer.

But then, he sees the boy.

He sees the boy.

Not just seeing him as a body to navigate around, but really and truly 'seeing' him.

Sensing his presence. Recognizing in him a peer.

"He is like me." 

And the boy sees him too.

Sam advances towards him, and smiles- a smile of understanding and of acceptance, like a secret handshake between two boys who know a secret that no one else knows.

The boy smiles back, his eyes filled with curiosity at this small child advancing upon him.

Their bodies collide like the waves crashing against the tiles.

They laugh out loud. And splash. And bounce. And flap.

An Autistic dance.

The moment passes, far too briefly, but in those few seconds something transpired that I had never seen before.

Somehow, without words and without help, Sam asked this boy to be his friend.

And in those seconds, they were friends like Sam has never had before. Equals. Peers.

"Social skills" can be taught in a class room, but friendship can only be born from the heart. 

They seperate and go their own ways, the older boy exploring the pool in ways too advanced for Sam to follow. But through it all, I see them watching each other, observing how the other body moves and experiences the world.

I look for the boys parents to introduce myself, but I can not find them. Perhaps it's for the best. Perhaps my child doesn't need my intervention. Perhaps in this brief moment, he has experienced a depth of friendship so intense and so authentic that my interference would do nothing but mar the memory of that moment of love, shared between two strangers who really aren't that strange at all.

***

He is hiding under the towels.

This is the ritual of getting dressed.  The bright fluorescent lights pain the eyes and the echoing chambers of the washroom overwhelm the ears.

The towel is like a barrier protecting the senses.

She doesn't need barriers. She likes to experience things as openly and rawly as life has to offer them. No sensory experience is too intense. Nothing intimidates her.

They could not be more different, these fruits of my womb.

This week, she has really discovered "play". She wants to play with everyone, all the time. Peekaboo, tickle fights, tag, tea parties...games that are far too advanced for what the books all told me to expect.

But she doesn't understand boundaries yet. She is, after all, only a baby.

Usually, he ignores her. Sometimes, he pushes her away.

Get her off me. I do not want her to touch my body.

We spend a lot of time playing referee between her needs and his.

And today, she wants to play. So I brace myself for the worst. It was a wonderful swim, but transitioning out of the pool is never the easy part.

She puts her hand on his body, and I pull her away.

"Charlie, you may not touch Sam's body..."

But from the very corner of the towel, in the shadows, I see his little face peering out.

And he is smiling.

It's ok, mom. We're playing. 

I yank the towel off his face: "PEEKABOO"

He erupts in giggles. He loves this game.

And so does she.

He sees her laugh. It makes him smile even more brightly. He pulls the towel over his head again.

PEEKABOO! I cry out as I tear it off one more time!

The musical sound of children's laughter is God's magnum opus.

My children. Laughing. Together. Playing beside each other. Can this be?

Before the thought can even fully develop, Sam covers his face again. But this time, the game has changed. It is he who yanks it off, with sparkling peekaboo eyes.

And they are looking right at her.

She explodes with joyous glee.

PEEKABOO SAM!

Back and forth, the game continues and I realize that I am no longer a player in it. They are playing alone, with each other, without me...their faces, inches apart. Sharing space. Sharing joy.

PEEKABOO CHARLIE!

As the game draws to its natural end, I help him stand to dress him. She stands too.

Like brother, like sister. 

And she stumbles her way across to him, and wraps her chubby arms around his legs for a hug.

He drops an arm down onto her body. Not pushing her away, but pulling her in.

Hugs.

There is no dream sweeter than the one that comes true.

Love.

***

It has truly been a beautiful day. 

I didn't blog today...

I didn't blog today
Though it was very much my intent
I was too busy actually living
My time was simply better spent
I cuddled with my daughter
As she sleepily rubbed her eyes
I wrestled with my son
One pant leg at...a...time!
I enjoyed cupcakes at the school
As kids' eyes lit up with glee
I wiped icing off a nose
And wound up getting it all over me
I splish and splashed around the pool
And, at the park, I ran for miles
I zoomed too quickly down the slide
And carried on quite like a child
I held his hand at the restaurant
And proudly watched him eat his meal
I tried to muffle her laughter
But had to giggle at her squeals
I watched him tear open his gifts
I became a train engineer
I was captivated by him
He was captivated by the gears
I rocked her gently in my arms
And breathed in her sleeping scent
I stroked the hair out of his face
As he slumbered off, content
And as lie in my husband's arms
And the pillow finds my head
I think "I didn't blog today...
I lived my life instead."

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.

An InLinkz Link-up

Goals...

It's IPP day again at Casa Dulock. In just a few hours, our little family will trek over to the school to meet with Sam's teacher, principle, SLP, OT, PT and aides to talk about the school year, where he is at in his goals and what next year holds for us.

While dropping Sam off and picking him up from school every day has presented some very real challenges for us, one of the real advantages has been daily contact with his teacher/aides. Beyond the communication book, I usually get a quick update on how the day went, what his mood was like, and any wins that went down. This 1:1 info means that there are usually very little surprises when we actually get to the IPP meetings. I've got a pretty good idea of how much Sam is rocking his way through the school-day grind.

As I was reviewing his goals in preparation for today's meeting, I couldn't help but smile to myself though. The goals set out by the school are so very different than the goals that we are working towards in our every day lives.

Don't get me wrong- I am ALL about taking the learnings that he gets in the classroom and applying them here. Being part of Sam's team means supporting all team members in their work with him. So I try to expose him to the arts and crafts for fine motor work. And I definitely make sure that he gets his gross motor play in. And I use the techniques and equipment recommended by his SLPs.

But those are the schools goals. And while I support them, they are vastly different than the ones we have created for ourselves.

The school focuses on 'school readiness'. They focus on 'social skills'. They focus on 'life skills' like doing up zippers and taking off shoes.

These are all extremely important and definitely a part of what we work towards at home as well.

But these goals are such tiny ones compared to the larger goals that we are always mindful of, within the family unit.  Our goals are more long term, and they are so broad that they are hard to measure in terms of forms and checkmarks.

Here are some of the main goals (or 'principles', as I like to call them) that guide our every day parenting journey (using the language of IPPs, just cause I'm feeling a little snarky):

1. Sam will live a full, rich, and happy life in which he feels loved and accepted for who he is.
2. Sam will learn to self-advocate in a variety of ways to communicate to others his needs, wants, feelings, and opinions. 
3. Sam will develop an awareness of his strengths, challenges, likes, dislikes and areas of disability. He will learn to capitalize on and/or mitigate these, just like every other person must, in order to navigate the complex social fabric of living in community with others. He will make friends with people he trusts, and nurture healthy relationships with people who respect him and accept him for who he is. 
4. Sam will understand that he is expected to grow and learn to the maximum of his capacity and capabilities and will lead a responsible and meaningful life.

Those are the things that are important to me. 

Honestly, I am not concerned with whether or not Sam learns to self-toilet in the next twelve months. While that is unquestionably a skill that I would like to see him develop, I believe that if I focus on helping him communicate with me in ways that are mutually meaningful and if we are able to create a relationship of trust and acceptance, in which all modelling is done with sensitivity and respect, that he will naturally learn these skills as part of his natural personal growth. 

It doesn't mean that I won't teach him. What it means is that I won't hold him down on a toilet seat, trying to protect my face from kicking and thrashing, because peeing in the toilet is "on the list of goals."  I will not train him like an animal and forget that he is a person. I will not contribute to anxiety and frustration, and will respect that home is where he is supposed to feel safe and secure.  It means that I will not teach using coercion and will trust that he will continue to grow and discover in a way respect his own individual timeline.

Ultimately, what it means is that I will not sacrifice our relationship in order to develop compliance so that I can check a bunch of marks off on a developmental score sheet. 

Because at the end of the day, it is much more important to me that my child loves himself and feels respected, safe and secure than it is for him to learn to tie his shoes.  Shoe tying does not equate happiness. Shoe tying is not a measure of a good life. 

So I will leave the shoe tying to the schools and the therapists. And I will do what I can to help Sam achieve the goals that they have set. 

But never at the expense of the goals that we have set in our own home. 

Because happiness and self-acceptance should really be the only goals that matters.