Chronicles of the lives of the Dulocks and their adventures in journeying through the mysterious land of the Autism Spectrum.
Formerly: "The Dulock Diaries"
It's been a busy day at Casa Dulock. Today, we were introduced to the newest member of our family: The PODD, or the "Pragmatic Organization Dynamic Display Communication Book".
What is a PODD you ask? Well, in simple terms, it is a low-tech communication device which will allow me to model visually the use of language for Sammie, with a long term goal of him being able to use the book to communicate his own thoughts, wants, needs, and desires.
It's a pretty exciting tool, but a lot to wrap my head around.
The concept is simple- We build phrases in structured parts, using specific images and phrases, within the context of a conversation. I use the PODD as a modelling device, with an emphasis on my own thoughts and feelings, and encourage Sammie to the do same to express himself.
It has about 50 pages, each identified by various categories and labels. Each page has 9 main symbols, and a series of sub-symbols such as "turn the page" or "oops" for when you have navigated to the wrong page accidentally.
Each PODD is individualized to the child's needs, interests, tastes, activities, etc. This allows for great precision when it comes to communicating wants, needs, likes and dislikes.
Where some symbol-based communication systems are based solely in selecting images, the PODD combines imagines/pictures with voice/sign prompts to create an entire concept. It isn't enough to show a picture of a dog. That, in itself, doesn't actually convey anything more than "this is a dog." With the PODD, you would also indicate that you have "something to say" about the "dog". You could then identify if you have a question or a comment, and whether you want to pet the dog or whether it frightens you. It is driven by the guiding principle of vocabulary, beyond just the simple use of words, and can be as simple or as intricate as the situation dictates.
It is intuitive, comprehensive and awesome.
And, right now, it's also totally overwhelming.
You see, there's going to be a serious learning curve with this one, and that's hard for me to accept. I have been waiting so long for actual practical tools that I want to be able to dive into it head first and nail the landing on the first attempt.
But that's not how these things work. I have to learn it before I can teach it.
So apparently my weekend plans have now become spoken for. I'm going to be spending a lot of time getting acquainted with my new friend PODD and finding simple ways to start integrating the model into our every day lives. I will also have to manage my expectations carefully to give Sammie a long time to adjust to this model before expecting him to pick up on it overnight. I suspect that will be a struggle for me, as patience is not a virtue I'm particularly known for. ;)
So I will read. And I will practice. And I will annoy my friends by using them as PODD practice guinea pigs.
But first, I'm probably going to start by creating a strap for it so that I can wear it around, because this thing is HEAVY!
So, PODD, welcome to the Dulock family. I know we're going to become fast friends.
Of all the things I hear all the time that really drives me batty, "I don't know how you DO it" is pretty high up there on the top of the list.
I mean, really.
You say this as if there is some sort of "opt out" option when it comes to parenting. Like God has a customer service counter where you can bring back your defective child and say "I'd like to upgrade to a better operating system. Do you have this in a blonde?".
Come on, people. It doesn't work that way.
"How do I do it?"
I just "do".
I "do" it because my kids are my everything, and I would "do" anything for them. I don't parent an "autistic child" or a "neurotypical one"- I parent Sammie and Charlie, my flesh and blood, perfect exactly as they are.
Is it easy? Nope. Parenting seldom is. But is it worth it? More than words can say.
Sometimes, I am running on fumes. Between school, meetings, therapies, IEPs, research, doctors appointments, and- you know- parenting another child, the days are often long and sometimes difficult.
We navigate a complex diet, massive sensory issues, and a couple of strong and persistent personalities, and we just try to do our best.
99% of the time, we do.
We survive.
Most of the time, we even thrive.
But we don't "do" it because of some deep seeded, altruistic motive. We do it because there just aren't any options.
Parenting has an automatic no refunds or returns policy.
And you don't know what you're going to get.
In the blink of an eye, everything can change all at once, and your expectations get smushed into the ground.
So you make up new dreams, and you create a new reality.
Because their bright, smiling faces make it all worthwhile. In fact, it makes you forget that you ever thought you wanted something different to begin with.
On the heels of an exceptionally trying day, I wake up and slowly start to put back together the pieces of my shaken spirit. I say my prayers, kiss my husband, bid good morning to my children (while striving not to silently curse them for waking up so early). I combed the interwebz for my morning laughs, go over work emails, review my scheduled events and plan out my course of action. One step at a time, I launch myself back into the world.
I'd like to say I'm ready to "take it on" and that I washed all the ugliness of yesterday down the drain with my final shampoo rinse, but I'd be lying. Yesterday still lingers over me like a shadow, a cold reminder of the fact that hard days are still ahead.
But I have released myself of the self-piteous, emotionally distraught state I found myself in last night, and I think that's a start.
Sometimes, on the hard days, it can be difficult to remember that this is the life I deserve.
I earned it.
I merited it.
This struggle, these challenges, this frustration.
I asked for it. Or it asked for me. I don't know. And I'm not entirely sure it matters.
I earned it when the surgeon told me at 15 that I had significant scar tissue and internal trauma that would forever complicate my chances for pregnancy.
I earned it when my oncologist told me that cancer survivors don't have babies- that our eggs and bodies just seem to never be fully able to recover from the barrage of treatments that it takes to keep one alive.
I earned it when I sat, covered in tears and blood, collapsed on the floor of my washroom, mourning the loss of life that I had once held inside me.
9 miscarriages.
2 children.
You're damn right I earned this.
Becoming a parent was not something that was supposed to be "in the cards" for me. Each of my pregnancies carried with it a formidable risk of complication, with both of my births landing me in the hospital and resulting in emergency procedures to keep the babies and I safe.
It wasn't something my body was meant to do.
But it was something my spirit was meant to do.
Compelled, even- if you want to get poetic.
Call it what you will:
A miracle of science. Fate. Providence. Divine Intervention. Karma. Coincidence.
You have your words, and I have mine.
Vocation.
This is the life that I was summoned to lead.
Despite all challenges. Despite all struggles. Despite all odds.
I chose to take it on, as a challenge and as a mission, because I know no other way to live.
I am, and have somehow always been, a mother.
I have often been asked: "If you knew your child would be born with Autism, would you still have had him."
What these people don't know is that, on some level, I always knew. I have been talking all my adult life about adopting a special needs child (believing, of course, that I could never have a child of my own). During my pregnancy, I was told that there were "abnormalities" and given the option to terminate because the risk for life-long complications was very high.
And yes, he is complicated. And yes, he probably always will be. But I learned to live when I gave birth to my handsome son, and again to my beautiful daughter.
Where once was lost, I now am found; was blind, but now I see.
I was born again, as a parent.
I worked hard for this life, knowing full well what it entailed.
I don't have much to say today. It's been an ugly one in my little corner of the world. I'm cranky, tired, and frustrated with so many things right now that it's all I can do to not scream. But of course, we never scream...or we might wake the kids. Which would literally be the worst thing ever.
They say that if you can't say anything nice, you shouldn't say anything at all. I've always believed that bloggers should follow this advice in general, so I'm setting the gold standard for that practice tonight.
Shakespeare told us that "A rose, by any other name, would smell as sweet".
And while it is true that, in spite what you name it, a rose would retain its essential characteristics regardless, modern psychology has confirmed time and time again that our impressions of that rose would be highly subject to influence by the words that we use to describe it.
The fact is that words, and how we use them, are incredible tools for influencing perception, understanding, and social definition. How an item, situation, or person, is described unquestionably impacts the idea we have of them.
Fog, in the context of a horror story, is terrifying. But strolling through a foggy morning with the one you love creates a picture of romance and peacefulness.
In both cases, the fog stays the same. But the impression surrounding it changes dramatically.
I've been giving a lot of thought lately on language, particularly when it comes to describing my child. Being the parent of a minimally-verbal three year old forces me to often have to speak "of him" and "on his behalf". Often- almost always, even- I have to do this in his presence.
Sometimes, I am speaking to his school friends or peers at a playground. Other times, I am describing him to our friends and family members. And, lately, I've frequently had to do it to professionals- doctors, therapists, teachers, aides- all of whom have varying degrees of first hand experience with my son.
And all too often, these conversations revolve around one key topic: Sammie's development, aka: Autism (or something like it, as it should be noted that Sammie is still officially undiagnosed).
It is an incredibly odd thing to have to speak on someone else's behalf. I am not in my son's mind. I have nothing but his non-verbal language, body and behaviour cues to guide me. At best, I am only guessing as to what he is thinking and feeling. Often, these guesses are shown to be relatively accurate. But sometimes, I wonder how much of my own mind I am projecting onto his.
In any case, I know from my background in sociology that the words that I choose to describe Sammie will create lasting impressions on those to whom I describe him. This can, and often does, impact their interactions with him in ways that, consequently, lead him to react in kind. This is known as labeling theory. We internalize the labels that are ascribed to us and these lead us to acting in ways that fulfill these labels, like a psychological self-fulfilling prophecy.
Jason and I chose to parent our children with one central philosophy at the heart of it all: Our children are human beings, from birth, with wants, needs, feelings, and opinions of their own that merit respect and consideration. This has led us to parent with practices that are often lumped under titles like "Attachment Parenting", "Peaceful Parenting", "Evolutionary Parenting", "Permissive Parenting" and so on.
In truth, we've never really related to any of these terms. We didn't choose our parenting tactics out of a book. We have always simply sought to identify the need that our child had, and meet these in a way that is respectful of them. More than any other term, we have related to the concept of "collaboration"- working together to find the solution that meets everyone's needs
In our quest to parent with respect and consideration, we have committed (as often as we can, as we all slip up once in a while) to adopting language that is either a) neutral or b) positive when we speak of our kids. We do this when they are present, and we do it when they are not (more out of habit than anything). So, for example, instead of saying our child is having a "bad" day, we talk about them being "sensitive", "off", "tired", "dis-regulated", "overwhelmed", etc. These descriptors, aside from being more accurate, remove the negative connotations associated with "bad" behaviour.
It has worked for us. We find that, for the most part, when others speak about Sammie they tend to use the same language that we have modelled and focus on the positive aspects of his behaviour.
Curious to know what other parents thought about the impact of language on their kids, I tossed the question out to the interwebs on two different forums, one for parents of children with Autism and another for parents of children with diverse and complex exceptional needs. The answers that I got were interesting, and generally consistent with my own point of view on the subject. However, one person's reaction definitely made me pause to think.
She wrote: "I think it is a fine balance. I also need to vent about the things that make my son more difficult because if I keep it in I will explode. I would never vent in front of him, but to my husband, friends, and you guys well... I also need the world to see that my son has both challenges ( that require extra supports) and strengths (limitless potential). If the government investes in our kids they will get productive members of society (taxpayers) rather than lifelong dependents."
She definitely brought up a few interesting points: 1) that negative language can be therapeutic, as a form of release and can be properly utilized in appropriate contexts, and 2) that, when we choose our language, we need to also remember to paint an accurate picture of the challenges that are faced.
Another poster gave an even more raw and incredibly human response: "I still haven't mastered positive language. It's a trend in all my life. I feel like part of me needs others to acknowledge how hard things are for me."
Another point to consider. If we use positive language, do we somehow create a situation where we are minimizing the struggles that we face, and therefore creating an unrealistic impression of our challenges and lived realities?
On many levels, I can relate to these posters. I have definitely struggled with family members telling me that it's "not that bad" because I have chosen words carefully in order to ensure that they do not judge or misrepresent my son. I have even been accused of "sugar coating" things, or of only talking about the "hard times" when it is convenient for me.
But on the other hand, I have a child to consider, and the weight of being his only voice in a world where spoken language is deemed to be the only valid form of communication bears down on me. Sammie has no control over what I say, and therefore has only minimal control over how he is perceived. What I say matters a great deal to him.
I think the first poster is right when she says it is a fine balance, and I have come to the conclusion that there is, in fact, a way to blend the two and to walk the fine line between presenting the cold hard facts, while not labelling the child and impacting the perceptions of who he is. This comes down to something I was taught in grade school: Using "I" language.
When I am asked to describe the challenges and difficulties that are present in our lives, I am actually not speaking only on Sammie's behalf. At that point, I am speaking of my own lived experiences as well, and on the impact that these have on my own life. By refocusing my language towards the "I", I am shifting the focal point away from him and onto myself.
For example:
"Sammie had a bad day. He kept melting down and wouldn't calm down no matter what I tried. He hit me in the face, and can not be controlled when he is like this"
can very easily become
"Sammie and I really struggled today. I wasn't able to help him through his meltdown no matter what I tried. I wound up getting hurt trying to help him control his body and emotions. We need more supports to learn how to get through these challenging times together."
By utilizing "I" and "We", and rethinking some of the context ("I wound up getting hurt" instead of "He hit me"), we shift the negative impact away from the child and onto the situation. We still clearly outline the challenges and accurately describe the situation, but do so in a way that is more solution focused, pro-active and respectful of the impact that negative words can have on our child and those who work with them.
I fully admit, these are still very preliminary thoughts on an aspect of the topic that I hadn't fully considered before today. I would love to hear some feedback from others on how they navigate the fine lines.
Do you find venting negativity, unhindered, to be therapeutic?
Do you worry about how it will impact how others treat/view your kids?
How do you draw the line between telling the "ugly truth", and keeping things positive and optimistic?
As I've written before, I'm pretty tolerant of people's ignorance regarding Autism and special needs in general. Ignorance is generally rooted in a lack of exposure, and not usually in malicious and purposeful obtuseness (though, I admit, that the latter does exist). Most people are not deliberately unkind, inconsiderate, or judgmental. They simply lack knowledge, information and guidance on what they should do in the face of a situation that is unfamiliar to them. They react on base instinct alone, and that's all that we can expect of people who don't have much else to go on.
And, unfortunately, a lot of "information" out there isn't exactly what I would consider to be the most accurate representation of life on the Spectrum.
But everyone's got their thing. Their pet peeve, if you will. The one thing that they can not, and will not accept as being part of their life. And while they can ignore other things, when that one thing creeps up, it can't be ignored.
Yup, she pretty much nails it! That is definitely one of my biggest pet peeves.
But even then, I can forgive ignorance, trying to remember that- once upon a time, less than 20 years ago- "retard" was a completely socially acceptable term and is still even deemed to be the most accurate medical term for some cognitive impairments. There are many that haven't yet caught up to the rest of society that understands that this term, and all the connotations that accompany it, are better left in the past.
But I understand her frustration. It's her thing. I get it.
I have a thing of my own.
So, to paraphrase Jillsmo: "You want to know how to get me to unfollow/unfriend/un-'know' you? Of course you do! Just refer to my kiddo as "suffering" from Autism in any context. Kthnxbye."
You see, there are few pills in life harder to swallow than for someone to tell me that my bright, smiley, sunshine-filled, fun-loving, charming, caring and affectionate kid is "suffering" because of how his brain works.
Nope, that dog don't bark here.
Yes, Sammie has a genetic (arguably epigenetic) neurological difference that leads to his brain processing information differently than those of with typical neurology.
Yes, that has created challenges for him to learning how to communicate and socialize with others in ways that are deemed socially acceptable.
Yes, he sometimes gets frustrated by these obstacles. Sometimes that frustration turns into tantrums. Sometimes (rarely), it even turns into meltdowns.
But let me make one thing very, very clear: WE DO NOT SUFFER.
: to experience something unpleasant (such as defeat, loss, or damage)
: to become worse because of being badly affected by something
So yes, in that context, I am sure that there are moments in Sammie's life, like in all our lives, where he is "suffering". But that is not what is implied when one says that Sammie "suffers" from Autism. People aren't commenting on the occasional moments in life where Sammie might fall, hit his head and 'suffer' pain. Nope. They are commenting on his existence, as a whole.
They believe that to be Autistic is to suffer.
And that's just not a belief that I can accept as being a part of my world, particularly not from anyone who has any first, second or even third hand knowledge of my kid and his life.
Those who know Sammie will tell you that he spends about 90% of his time smiling. Sometimes, he smiles at people. Other times, he smiles at things. And often, he smiles at the world in general, as if he is in deep psychic conversation with Mother Earth.
He laughs ALL. THE. TIME. Sometimes they come in small giggles, and other times huge explosions of hearty chuckles. But laughing is a huge part of his special language, and he loves to share his happiness with the world.
Sammie may not speak, but he can sing. He hums almost the entire day. Some of the songs are made up, others are almost spot-on renditions of his favourites like "twinkle twinkle" or "three blind mice".
Sammie seeks hugs, kisses, tickles and other forms of affection. When he really wants to know that you are paying attention, he looks deeply into your eyes, seeking out your reaction and ensuring a lasting connection. Granted, eye contact doesn't happen as frequently with him as with other kids...but in a way, that is a gift. I have learned to appreciate his eyes and cherish every gaze. I'm not sure I've ever understood eye contact as "connection" before Sammie.
Again, yes- He gets frustrated by the fact that he functions differently from other kids. That's pretty typical actually. We all get frustrated by differences in our skills, abilities, and personalities. We want to be able to do things that others can do, and often don't understand why we can't. This is a part of being human. It is a vital aspect of our personal growth. But it is not suffering.
And, yes- sometimes, he has tantrums. He's 3. That might actually be the most neuro-typical thing about him.
And finally- ok: Every so often, those turn into meltdowns. In Sammie's case, these are exceptionally rare (a luxury that I know is not shared by every family with special needs kids). When they happen, they are intense, and they are frightening. Sometimes, they are dangerous. There are few things in life worse than watching your child become physically, psychologically, emotionally and spiritually overcome by the world around him, to the point of not being able to control his mind or his body.
Those moments are terrible.
And in those moments, there is suffering.
For him. And for all of us.
But these are NOT the moments that define him.
And they are NOT the moments that define our lives.
Sammie is defined by the smiles, the laughter, the joy. He is defined by the intelligence, the sense of humour, the inquisitive nature. He is defined by his persistence, his memory, his perceptiveness. He is defined by his interests, his likes, his dislikes, his fears, his ambitions, his hopes and his dreams.
Without words, he tells us daily the story of who he is. And it is a wonderful story about an amazing little boy, who loves his life and loves himself for who he is.
We do not suffer.
Don't believe me?
Pictures tell a thousand words. Does this face look like the face of a kid in a perpetual state of suffering?
No???
I didn't think so. So don't ascribe to him a life of pain just because you have a hard time understanding that he likes himself for who he is, even if that doesn't suit your definition of what is "normal".
Different is not suffering.
kthanxbye ;)
With love,
Mama Dulock
PS: Just in case those around me need a reminder, THIS is my son. And his voice is full of happiness.
It's day 3 of November, amd therefore day 3 of National Blog Post Month ( http://en.blog.wordpress.com/2013/11/01/nablopomo-november-2013/).
I only decided to enter the game today, which is ok since I actually wrote blog posts on both the first and second of November by coincidence. This will probably help me as I make the "brand" change from the "Dulock Diaries" to "Autism, or Something Like It", a move I have been considering for quite some time.
So here goes, another 30 day blog challenge in which I will push myself to really write about topics and ideas that compell and intrigue me. I suspect, as usual, most will center around parenting, special needs, and the space that connects the two. I don't promise brilliance, or even that much wit...but I do promise consistency.
