Real Bras

Tonight is another throwaway post. Why? Because I went out like a grown up and had a wonderful at a friend's theatrical dance performance. And now it's late and I have to be up early in the morning.

But as I close off my evenings and prepare for bed, I'm moved by a subtle and simple change in my life.

Lately, I've been wearing more and more real bras.

My daughter, pummelling towards toddlerhood like a speed train, is slowly starting to slow her nursing down. Day by day, the necessity of the staple of my wardrobe for the past four years- the nursing tank- is starting to slowly fade away.

This is bittersweet. Bitter in that I have treasured the breastfeeding relationship I have had with my babies, and this small step forward reminds of the fact that I am coming close to the stage where 'baby' will be a thing of the past for me.

But also sweet in many ways. My babies-to-me are becoming amazing tiny people. They are learning and exerting independence and are constantly surprising me with their knowledge, their wit, their curiosity and their unrelentless and bold personalities.

As my baby days fade into the past, they are replaced by brighter and fuller days of toddler, preschooler, and- soon- child, preteen, teen and adult. It goes by so quickly, and yet is so deeply enriching that I am left nostalgic...not necessarily "wanting more" but panged by a sweet longing and yearning that will follow me my entire life.

And while I am not there yet, I know that soon my body will have done its duty. It will have brought to life two amazing humans. It will have fed them, kept them warm, nurtured them and soothed them. And I wonder if, when all of this is said and done, I won't always remember their phantom hands stroking my body as they nuzzled into me, safe and secure in my arms.

Bitter. Sweet. Like so much in this parenting journey.
Happy. Sad.
Celebration. Loss.
Hope. Grief.

The yin and the yang of life lingering in the space between her face and mine.

It has been glorious to nurse these nurslings, and it will be sorely missed.

But to every time there is a season.

And I'm excited to wear real bras again. ;)

Back on the happy tracks

I'm half way through a real blog post. I was going to finish it but I decided to clean instead.

And then I had a meeting with the kids' (yes, PLURAL woohoo!) new part-time day home provider to discuss supports for Sam during his out of school care.

Then we celebrated the awesomeness of that meeting with french fries.

Then we went swimming. Well, Sam mostly floated around- happy as a clam- while I treaded water like a frantic cat.

And then I decided to go to Zumba. Because I could. And it was awesome.

And then bedtime and dinner and another 30 minute jog to hit my step goal (I've gone up to 15K a day)

And then, an hour of catching up on work since I'm a little behind today...while listening to Orange Is The New Black with my awesome hubby.

And now it's 1030. And I don't want to weigh my mind and my body down by taking on a really serious topic this late at night.

So, you get a throwaway post. Because sometimes feeling good really says it all...

:)

Conversations with Charlie

Charlie: Momma...wassdat?
Me: Charlie, that's a phone.
Charlie: OH! A PHOOONE?
Me: Yes. You know that.
Charlie: I know! So silly! Silly Girl!!!
Me: Sigh...
Charlie: GOOD GRIEF!

***

Charlie: Guppies?
Me: No Guppies until after lunch.
Charlie: Guppies now?
Me: Lunch now.
Charlie: NOOO! GUPPIES!!!!
Me: Hot Dog?
Charlie: Oooo! DIP DIP?
Me: Yes, you can have some dip dip too!
Charlie: DIP DIP!!! GUPPIES!!!
Me: Sigh.
Charlie: NOM NOMMMM <grin>

***

Charlie: Iphone?
Jason: No Charlie, Ipod.
Charlie: Oh...Iphone!
(note: no one in our home currently owns an iphone, nor have they ever.)

***

Seriously...this child.

Charlie, 18 months old. 

Richard Dawkins is an asshole Or "19 Weeks"

(This is a "two day" post because it took me two days to write it due to the significant amount of emotional stamina required to write it. So I think it qualifies for both Day 8 and Day 9 of the SBC)

Content Note: Discusses infertility, miscarriage, abortion, medical malpractice, sexual assault, medical/institutionalized racist/misogyny, ableism.

This post was inspired by Richard Dawkins's ableist and offensively anti-woman comments surrounding the immorality of not aborting fetuses that test positive for Down Syndrome. This blog post touches on some extremely personal and difficult to write about topics and, for that reason, comments on this post have been turned off.

***

I was 19 weeks pregnant.

19 weeks and three days, to be precise.

It was February 5, 2010, and it was unseasonably warm for this time of year. It reminded me of my wedding, back in February 2008, where the sun shone so brightly that it practically melted away all the snow while we were in our ceremony. I had to wear rubber boots to pictures. It made for some interesting shots.

It was a warm, beautiful, perfect day. Like that one.

And I could not believe that I was going to get to see my 19 week old baby.

Fetus. I was going to get to see my 18 week old fetus. That's what they call it, after all.

But after years of infertility and 7 miscarriages, all I knew was this. This fetus moved inside me. It had finger nails and eyes. It had a personality already- I knew it's playful times and it's quiet times. So, while I won't argue with the medical community about the fact that it was a fetus, please try to understand that- to my heart and to my soul- it was every bit as real a baby as a baby can be.

And in only 22 more weeks (or so) it would be mine to hold.

The ultrasound went beautifully, though the baby wasn't inclined to show me its gender. It didn't matter. "Healthy baby" is all I cared about.

"Born alive" was my personal mantra.

I was filled with beauty and joy, but still didn't share much about the experience on facebook or otherwise. No belly pics. No ultrasound images. No daily updates.

I'd been burned before, too many times to take the risk.

One week later, on February 12th, I received an extremely unexpected phone call.  It was from my OBGYN's office, asking me to call them immediately. So, despite being at work and surrounded by colleagues, I picked up my cell phone and called.

I was expecting an appointment to be rescheduled. I was expecting possibly a problem with my doctor's schedule, requiring a change of practitioner.

I was not expecting to be transfer to my doctor, to be told that he would have 'preferred to tell me in person, but that since he was leaving for Mexico for two weeks and the window for termination would be closed by the time he got back, this was the only choice.'

I did not expect him to tell me that there were some "irregularities" with the pregnancy- and showed what appeared to be a pericardial effusion, a pleural effusion, some dark spots on the brain (probably a subdural effusion) and a 'two vessel chord' (single umbilical artery), all of which lead him to conclude that the fetus likely had a condition called Fetal Hydrops.

I could barely get the words out of my mouth: "What does that mean?"

He launched into some complex medical explanation, and I cut him off:

"But doctor, what does it MEAN?"

"It means," he responded, "that your baby is unlikely to survive to term. And if it does, it will likely have little to no quality of life and will die shortly after delivery. It also means that there is a risk of hydroencephalis, a condition that could lead to fatal complications for you if it develops too far."

"So...my baby is going to die?"

"That is likely. And continuing with the pregnancy is extremely risky. We are going to want to have serious discussions surrounding whether or not you should consider termination. Babies born with these types of conditions have no quality of life to speak of."

No quality of life to speak of. 

The words felt like they were hanging in the air.

The conversation went on for several minutes. I don't remember much of it. I do remember telling the doctor that no, we would not be terminating the pregnancy- certainly not without receiving a second opinion, and I remember insisting that we be booked at the perinatal clinic for follow up and  My husband and I had already discussed this several times throughout our marriage- what would we do if?- and we knew that it was not a route that we could take. Not after 7 miscarriages.

(This is not a religious or moral statement on abortion. We are both supporters of a person's legal right to body autonomy, including the right to terminate an unwanted pregnancy, and Mr. Dulock is agnostic, bordering on atheist. But again- you have to remember- emotionally and psychologically speaking, this was our child. And we were invested. We were as 'all in' as you can get. We knew and understood the risks, but this was our child. Our child who kicked my belly. And had finger nails. And got the hiccups from 10am until 1130am every single day...)

Of course, it was still a conversation to be had, and it was a tough one. Many tears were spilled over the course of the next several days. There were so many unanswered questions. So much fear. So much confusion.

And we were alone, abandoned by the medical system that was supposed to guide us.

So, I did what I do best. I turned to the books. I started to pour over medical journals, by the dozens. I learned absolutely everything I could about the various irregularities, compared studies examining quality of life in FH, read about care for fetuses born with FH as well as antenatal treatment options. I discovered that up to 50% of effusions on ultrasounds can actually resolve themselves and can be the result of issues with the U/S picture quality, angle, or even caused by excess fluid if the mother has had cold or flu recently (which I had).

I also read up on the laws surrounding abortion in Canada. I learned that my doctor was making a very preemptive recommendation based on what I can only assume was outdated information and a desire for expediency. It is also possible that he was trying to 'spare my feelings', but I'm not the notion of what was really best for me was that strong a motivator given that he gave me the news on the phone, while on his way out the door to Mexico.

He lost my trust. The entire system lost my trust.

I armed myself with knowledge- not from Dr Google, but from actual doctors and scientific studies.

I was ready for battle when I walked into the perinatal clinic two weeks later, ready for my war to begin...

It was pretty anticlimactic, as far as 'wars' go.

The ultrasound showed a few abnormalities that would "need to be monitored" but the perinatologist said that he saw no indication of pleural or pericardial effusion, that the brain appeared to be developing properly ("if perhaps a little on the large side...") and that he saw "absolutely no reason to recommend termination of the pregnancy."

In fact, they weren't even sure why I was at the clinic to begin with, aside from the fact that I was showing signs of HELLP syndrome, a condition which would eventually land me an extended stay in the hospital and a premature delivery.

Developmentally, the baby was pretty close to perfect.

When I asked how the information could have changed so dramatically over the course of just to weeks, I got an 'unofficial' explanation that it was not uncommon for doctors to jump the gun on termination around the 18-20 week mark because otherwise women aren't able to access an abortion if things get worse.

"Abortions in Alberta are only performed up until the 20th week of gestation, unless there is a medical risk to the mother's life."

My jaw dropped.

Could that really be what just happened here? On the off chance that the complications did not resolve themselves, the assumption was that I would want an abortion, would regret not having one and would no longer be able to access it as a medical option?

That was when my rage turned to fury.

You see, part of my 'privilege' package is that I am rather well educated and a very strong reader. I also have gifts when it comes to information recall. My formal education was in political science and sociology, which results in my having a better knowledge and understanding than many of Canada's history and laws.

And I knew as a fact that abortion in this country is completely legal and un-legislated. There are no laws outlining how and when a woman should have access to an abortion, which inevitably results in the fact that women have the right to terminate their pregnancies up to and including the moment of birth.

However, it is slightly more complex than this.

You see, in Canada, the professional medical societies enforced their own standards of abortion law by creating unanimous policies regarding abortion access. Absent medical need (read: risk to the mother), women have an extremely difficult time accessing an abortion in this country past the 24 week mark.

Now, I am not going to comment on whether women *should* be able to access abortions passed this point. Nor am I going to entertain debate on whether or not abortion should be legal. But it does concern me gravely that it is doctors that are controlling women's rights to choose- doctors who have not been elected, are not held accountable to the public body in any way, and do not have to exercise transparency in their medical or policy decisions. There is no platform for debate, no special witnesses from outside the medical profession who can offer scope beyond the 'body' and discuss the social implications of abortion access.

And, I'm sorry but that's not how a democracy is supposed to work. Doctors should not be lawmakers.

It shouldn't be up to doctors to use policy to dictate what I do with my uterus; nor should it be up to bio-ethicist like Richard Dawkins to attempt to use their influence to do the same. Women must maintain the legal right to their bodies, but this legal right is meaningless if there is no practical way to apply it.

(Again, please note that our decision to not terminate our pregnancy had already been reached here.)

But the thought of how many women who had never had the opportunity to have long discussions surrounding disabilities, or who lacked the resources and skills necessary to conduct thorough research on their own, or who lacked the ability to self-advocate and demand a second opinion...the thought of them being in my shoes, being told that their baby was going to die and was possibly going to kill them while at it...that thought turns my stomach.

Let me be clear on this fact: I believe that women should have the legal right to terminate pregnancies for any reason they so choose. The law is not there to legislate morality (really, it's not.) and there is no way, at thist time, to protect a woman's right to bodily autonomy and integrity without this fundamental right.

I believe that women should have the right to choose this for financial reasons, for personal/emotional reasons, for medical reasons and- yes- even because they do not want to give birth to a baby with disabilities. I believe that a woman should never have to justify or rationalize to me- or any one else- her reasons for choosing to exercise control over her own body.

Women should have that right just as much as I had the right to know that there was no circumstance under which an abortion would be the right choice for me. (And given this story, I feel pretty comfortable saying that...) My choice is no more or less valid than any other woman's choice; my choice should impact no one's body but my own.

I do not have a stance on "gestational age" because the percentage of terminations occurring past the "20 week" mark are infinitesimal and are limited almost exclusively to situations where the mother's life is at risk. This is as true in Canada (less than 2%) as it is almost all over the world (in US, 0.08% of abortions are conducted post 24 weeks).

I believe in the right to choose, even when this choice is vastly different from the one that I would make.

BUT I DO NOT believe that the medical system should have the right to sway that woman's opinion because of a systematic and incomprehensible disdain for the lives of individuals with disabilities and differences.

I do not believe that it was ok for the medical system to use very scant information to make a premature judgment and attempt to influence my decision by using vague and undefinable terms like "quality of life" to encourage me to terminate my 'irregular' pregnancy.

And I certainly do not believe that it is ok for them to do so because their own policies make it complicated for women to abort after a certain time frame so adding pressure on them to make quick (and possibly even) premature decisions to fit into "20 weeks of less" Canadian status quo

When the medical system throws around terms like "Quality of Life", a term that lacks both definition and context, and fail to provide sufficient time and support for women to sort through the information regarding the decision to terminate a complicated pregnancy, what they are doing is creating a layer of pressure and exerting a completely inappropriate amount of authority and control over the decision-making process.

The reality is that women who choose to use medical practitioners in their birthing journeys put a significant amount of trust into these individuals. We expect them to be transparent with their biases, and to be supportive of our decisions and our right to oversee our own medical care. We also expect them to comply to the ethical concept of "informed consent", a process that requires not only a full transparency in the information provided (pros and cons of the procedures itself, and of the decision to not have the procedure) but also should include a disclosure of personal bias when one exists.

Few would argue that a doctor treating a woman whose fetus has tested positive for Down Syndrome, who happens to be the parent of a child with Down Syndrome, must be transparent of her likely bias towards continuing the pregnancy or must- at the very least- recognize this bias and ensure that it does not interfere with medical care. This is likely not a point that would be argued by many.

However, what we fail to recognize is that the same must be true for the doctors who have an ableist bias- a pervasive belief that anything that is not deemed 'typical' in terms of is somehow inferior, or a problem to be fixed. This mentally has been the dominant one in the medical field, likely since the birth of the field itself, and has led to the medical profession performing atrocities that- to this day- boggle the mind.

Let us not forget that it was doctors who created and undertook the Tuskegee Syphilis Study (In the Negro Male) which followed a group of 600 poor, African-American men, 399 with untreated syphilis, for 40 years to examine the effects on their bodies. These men were not only refused treatment for their illness, their families were as well.  This is only one of many historical examples of medical racism.

Let us also not forget that it is the medical profession that gave us the term "hysteria", blaming 'wandering uterus' and other nonsensical conditions of both the physiological and mental variety (research today indicates that the symptoms used to diagnose hysteria would most closely fit those of PTSD, usually resulting from sexual assault), allowing medical practitioners to assault women's bodies to 'manually manipulate' or 'orgasmically stimulate' as a cure. Again, this is just one of many examples of the atrocities the medical system has perpetrated against women.

Let us also not forget the fact that, up until 1974, homosexuality was considered a "mental illness", and curing the condition was something strongly advocated within the medical community. (Note: "Curing" homosexuality used the exact same process that many people still use against Autistic people to attempt to "cure" them of their condition.)

So let's not kid ourselves about the fact that the medical system, while oftentimes an indispensable force of greatness, is also often a force of great harm. Bioethicists (which, ironically, is the profession of Richard Dawkins) must begin to consider that social/medical bias against disabilities is a topic that must be acknowledged, discussed, and- ultimately- discarded in order to protect the interests of this all-too-often vulnerable population.

Continuing to forward arcane ideas of "quality of life" without either a) a sufficient and comprehensive definition that includes not only the medical disability model, but also the social model, b) providing women with as much objective and comprehensive information regarding not only the risks but the positive outcomes of those living with complex medical conditions, is a failure to acknowledge bias and prejudice towards those with disabilities and- unchecked- results in a continued, unrecognized predisposition towards eugenics.

It is also a continued violation of the principles of women's right to body integrity. Making the choice to terminate or not terminate a pregnancy is only really a choice when the information that you are using to make that choice is accurate, comprehensive, and as objective as humanly possible. In the absence of objectivity, a balance of opposing points of view should be provided to allow for as thorough an understanding of the situation as possible.

Failure to ensure that these measures are in place is to allow doctors to continue to exercise a completely inappropriate amount of influence over a mother's decision to terminate a desired pregnancy, a terrifying reality that I have lived first hand.

Put bluntly: If my doctor had his way, my son would not be alive today.

I am grateful that I knew and understood that the choice was not his to make. 

(*It should be noted that I used the same doctor for the birth of my daughter. With this exception of this one issue, his care was exceptional and when I made my intentions clear regarding my pregnancy, he respected my right to do so.)

Taking one for the team.

I didn't blog last night. I went to bed at 830 pm.  I didn't hear the toddler wake up at 230 am, nor did I hear my husband get up to rock her. I did hear my son wake up at 3, and barely Jason telling me to go back to bed- that Charlie was back asleep and that he was taking care of Sam.

I remember Jason coming back to bed at 330, and I remember hearing Sam's giggles and the voice of Emily the train over the monitor.

And then I remember nothing until 7 am.

I wouldn't know until morning that Sam didn't fall back asleep until 5, and that Jason didn't either.  I wouldn't know until morning that the trade off for my night of rest was that my husband would hardly sleep at all.

Of course, I could have predicted it. And I know that tonight, the tables will be turned, and it will once again fall to me to make sure that Jason gets at least a few extra hours.

This trade off is how we work, like a well oiled machine. It is hardly ever discussed, but we are effortless- practically psychic- in knowing what role we are to play at any given time.  There is no sense of competition.  There is no counting the hours.  There are no score sheets.

All there are are "Thank yous" and "I understand" and "my turns" and "I love yous" and "I'm sorrys".

I don't know much about marriage.  And I don't know much about marriage in the context of an intense and complex family life.  But I do know this much:

The second you start keeping score, you go from one team to two.

Our motto is- has always been- "we're all on the same team."

In compromise, everyone loses something.

In collaboration,  everybody walks away feeling like they have won, because the goal is a shared goal.

I am really lucky to have Mr Dulock as my co-captain.  Thanks for taking one for the team, Bebe!

Now, my turn.

Exercises in futility.

I made the deliberate decision to not blog last night.  As I crawled into my bed at 9 pm,  three hours earlier than usual, I knew that if I did not soon get some sleep, the thin line I walk between tired and full-out sleep deprived would be crossed. Jason and I had made a pact- 9 pm bedtime,  no ifs ands, or buts.

So, of course,  here I am at 3 45 am am, struggling to put an inexplicably awake Charlie back to sleep. We are already forty minutes in, and no end in sight. Every minute that passes, I am getting closer to the time that Sam wakes up- usually between 4 and 430 am.

Trying to catch up on sleep is an exercise in futility.

Edited to add, in response to a well intentioned by ill-timed comment: 430 am.  Charlie is just falling back asleep.  Sam has just woken up. I am stuck with her. Jason is dealing with him.

This is not 'some' nights.  It's many nights. Some weeks,  it's most nights.

And it has been this way for years.  So unless you *actually* get it (and I mean *actually* as in have had weeks at a time where both adults in your household are running on less than 3 hours of sleep a night, total, with each of them balancing trying to balance work as well) please don't try to commiserate and tell me that you "know how I feel".  It doesn't help- it makes me feel worse and more isolated. The odds are, unless you have a child with an sleep disorder, you have no idea how it feels.

Happy Secrets

It's been a happy day.

The kind of day that makes me really realize how blessed I am.

A day that was full of smiles,  of laughter, of sunlight,  and of living life to the fullest.

I could tell you all about my day.

But I would not be able to do it justice.

Because it was, after all, just an ordinary day.  What made it special wasn't what we did- it was who we did it with and how we did it.

And somehow I think that telling the story would rob this day of its magic. Of its simplicity.  Of the intimacy that is shared by experiencing sheer beauty in the ones you love.

So today, I am going to keep those precious details to myself. I am going to greedily relish them, cling to them, and keep them in my pocket to pull out the next time the day feels stormy.

But tonight,  I go to sleep with a full heart and a satiated soul.

And I hope you are feeling the same way.

Inclusion in a real world setting.

Lots has been written about inclusion. What it means, how it can be achieved and why it is important.

I am not an expert on the subject matter by any means, but as a parent who is quickly approaching the time when her child will reach 'school age', it is a topic that piques my interest.

Sometimes, I think that we over complicate the idea of what it means to be 'included'. Sometimes, I think that we think ourselves into circles, and finally think ourselves right out of it altogether.

In truth, inclusion can be often be very simple. Meeting a person where they are at, giving them the support and acceptance they need to navigate obstacles and focus on strengths, and ultimately helping them to achieve self-growth.

And it needn't happen in a classroom. In fact, inclusion can and should happen everywhere we go.

Today, we took Sam swimming.

This is not a new thing- we go almost every day. But today, I saw an example of inclusion at work. An ordinary setting, with ordinary people, doing ordinary things and making an extraordinary difference.

Sam really dislikes wearing his wrist band.

No wait- that doesn't go far enough.

Sam is incredibly uncomfortable wearing his wrist band. He fears it. Most of the time, he is so completely incapable of handling wearing it that he would rather not go swimming than put it on. (And that's saying a LOT because, if he had his way, Sam would live in the water.)

Where we go swimming, this has never been an issue. Not once. That's actually why we go there.

He is always offered the wrist band and, when he refuses, the staff members immediately (and casually) move to put his band on my wrist instead. No fuss. No questions. No expectations other than giving Sam a choice and respecting his ability and capacity to decide for himself.

It's simple. It's considerate. It's accommodation, at its finest.

And it's been going on this way for over a year. I think Sam was only two-and-a-half the last time he successfully wore a wrist band for the entire swim.

That is, until today.

Today, we walked up to the counter and Heather was there. Heather knows us- she sees us often- but we've never really chatted much before. She is very friendly, always warm and welcoming and I have thought more than once how lucky the centre is to have staff members like her.

Sam had two trains in his hands. A big Thomas train and a small steam engine. He placed them up on the counter as he often does. But this time, something different happened.

Heather said "Are those you trains, Samuel?"

(short pause)

"I really like the big one. Is his name Thomas?"

(momentary glance at her face)

"Does your other train have a name?"

(Hum and smile)

"I like that you brought your trains today, Sam. Do you think you might want to try wearing a wrist band today?"

(Pause.)

He waits, and does not pull away. She leans forward, without removing the train from his hand, and gently places the band around his tiny wrist.

My mouth dropped. Her eyes sparkled. Sam looked at the band- taking in the experience of wearing it- and paused again.

I was waiting for him to say no. I was waiting for him to signal that he wanted it removed.

But these things did not happen. Instead, he smiled, hummed, flapped for a second, knowing that the next step was pool time.

Heather followed us to the change room hallway. I could tell that she was proud. I was proud. But mostly, I was grateful and impressed.

"You do understand," I told her, "the importance of what just happened."

And she said, "This is really big for him."

I smiled and responded that, yes it was. But it was also big for us, because it validated our belief that Sam- when given the right opportunity to build trust and to establish his level of comfort, will always meet and exceed our expectations. That the presumption of competency, a fundamental principle in our parenting, is the understanding that- with the right supports- Sam will continue to thrive.

I told her "You spoke to him. You built a relationship with him, and you called him by name. You validated his feelings and showed an interest in the things that interest him. You respected his language, respected his body, and respected his space. You made him feel safe and secure. And you empowered him to overcome his fear and discomfort. You made a difference for him, and for us, and reaffirmed that this is a place where he is respected and valued."

That, my friends, is inclusion. When you feel safe, respected and valued in your space. And it isn't restricted to those with disabilities. It is a feeling that we all need. We all want to feel included, part of the bigger whole. But we want this on our terms, in ways that we are comfortable with.

Inclusion isn't a set of policies. It is a mindset. It is the inherent belief that every single person has the right to feel validated and has the right to participate in society to the extent of their desire. It doesn't happen in policies and procedure manuals. It happens, every day, in ordinary settings, with ordinary people, doing ordinary things that make extraordinary impacts.

Thank you, Heather.

Date Night: Retro Style

It's date night.

We don't do this often.

And by often, I mean hardly ever.

A planned, organized evening where we dress up and head out somewhere special like real grown ups?

I can't actually remember the last time it happened.

They are playing "My Fair Lady" (1964) at Fort Edmonton Park's historic Capitol Theatre (restored in 2011 to its 1929 glory) so we thought we would dress the part, Mad Men style.

I will post pictures later. For now, I am going to enjoy one of my favourite movies with my very favourite person in our favourite way: quirky, crazy fun - style.

"Autism Parent" and the Horrible Duplicity of the "Autism" Label

A few weeks after Sam was officially diagnosed with Autism, I was having a chat with another mom at an indoor children's play place. Young and impeccably dressed in her skinny jeans, immaculately coifed hair and super-trendy looking "Proud Autism Mom" t-shirt under a fake leather jacket, I could tell right away that she and I were not cut from the same cloth. After all, I'm not entirely sure I was wearing matching socks at the time, and the odds are pretty strong that the pair I was wearing actually belonged to Sam.

But I knew- deep inside my gut- that it was only a matter of time before she came up and said 'hi'. After all, 'Autism Parents' are a community. We are all automatically bonded...right?

Given Sam's propensity for 'happy flapping', I knew she would spot us almost instantaneously. And I was right.

 She approached me, with a big smile, and I braced myself for what I knew would be an extremely awkward conversation that would leave me feeling significantly more socially-defunct than Sam ever has been.

She was friendly enough, and immediately (predictably) launched into her 'Autism Mom' speech. Her daughter, whom she described (within ear shot of her) as an "extremely high-functioning Aspie who is so smart but is an emotional roller coaster and a total nightmare to parent" had been diagnosed at age two, almost three years ago. "It was a total shock", she said.

I didn't say much. I'm not really good with strangers.

"How about you?" she asked. "When did you know Sam had Autism?"

"Pretty much from the day he was born." was my seemingly unexpected response.

"Oh? Because he didn't make eye contact or want to be touched?" she pressed.

"Nope. He loved being snuggled and the eye contact thing comes and goes. But I just knew. When he looked at objects, he looked at them differently from other babies. He didn't just look at them, he experienced them and wanted to understand them from every angle. He was different- we always knew that. The question was whether or not Autism was the best explanation for those differences, which is why we had him diagnosed. But Sam was born Autistic."

{predicted, awkward pause}

"You mean, that he has Autism right?" {Awkward laugh.} "After all, he isn't defined by his disabilities."

And there it was. "Person-first language" in all its condescending glory.

Being relatively new to the person-first debate, I admit that I didn't say much. I nodded, agreed, and came up with some excuse to escape the situation as soon as possible.  Within minutes, her daughter became very upset and needed to be removed from the space. I felt horrible for her, but extremely relieved for me. But the whole experience left an extremely sour taste in my mouth for weeks to follow.

Most of us have heard it, in some form or another:

Image description: Image is of words on a white background. Quote says: "Labels go on soup cans. Autism is a diagnosis." Font is similar to child's hand writing, and word 'Autism' uses rainbow coloured font.

It can take on many forms, but it seems to always come down to the same message:

Image description: Image is of a silhouette of a human head on a gold back ground that appears to be radiating light from the head. At the centre of the head is a puzzle piece cut out shape. At the top of image is the following quote: "Autism may make my child HOW he is but it does not make him WHO he is." - Stuart Duncan" At the bottom of image are the words "Brain Balance of St Louis/Edwardville")

"My child is more than a diagnosis. He is a person. He has autism but he is NOT autistic."


We'll all heard these arguments before. Whether you are a disabled person or are the parent of a child with a disability, you've likely had someone explain to you the importance of "person first language". They will tell you that disability, in this case Autism, should not define the child. Instead, we should focus on what the child "can do, and not on what they can't do."

Many people much more capable than I have written on this topic extensively. I would recommend taking the time to read the following articles:

Identity and Hypocrisy: A Second Argument Against Person-First Language by Autistic Hoya

Why I dislike "person first" language- Jim Sinclair by Jim Sinclair

Disability first: autism is not an accessory by Illusions of competence

Remember autistic & person aren't mutually exclusive! Language, again. by Radical Neurodivergence Speaking.

As for me, I've been pretty black and white about my stance on this. Autism is not a set of behaviours, nor is it defined by the inability to perform tasks. Autism is a neurological difference, present at birth and scripted into genetic codes (for more on the definition of Autism that we use in our household, please see this fantastic post, What Is Autism?, by Nick Walker).

So when I say that Sam is Autistic, I am neither defining him by what he can do or what he can't do; I am describing him by how his brain (probably the most fundamental part of who he is as a human being) functions and by how this set of differences sets him apart from people who are not Autistic.

I am not 'defining' Sam by his diagnosis. I am not defining Sam by anything.

Sam is a human being who has the right to define himself.

(Warning: I'm about to put on my 'sociology hat again'. Proceed at your own caution)

You see, the thing about labelling theory is that human beings have a tendency to want to classify, categorize and define everything. We like to create order out of apparent chaos. We label instinctively, usually subconsciously, and we do this to socially-control behaviour.

Labels can be grouped into two major categories: Normal (or 'abiding by social norms') and Deviant (or 'deviating from social norms')

In labelling theory, the idea is that people conform to their labels. So, generally speaking, if someone (or something) is describe in negative ways, people become stigmatized by their label and 'othered' by society. This can lead to a reenforcement of the deviant behaviour as it can be extremely difficult to reintegrate into the social world once one has been stigmatized and excluded from it.

So, you can see why we would want to be very careful about 'labelling' people in ways that promote stigma.

Unfortunately, in many cases, the zealous movement of 'person first language' actually reenforces that which it is trying to combat. By stating repeatedly that Autism is a (implied 'negative') label and should not "define" our children, what is inherently being done is underscoring the idea that Autism is something that should be perceived as 'deviant', as opposed to a naturally occurring divergence from normal.

What we are inevitably doing is highlighting the deviancy of disabilities, and reenforcing the very principles that lead to stigmatization.

This is why we don't say things like "Jane Doe is a person who has homosexuality". (Well, at least we don't anymore...up until 1974, we would have said "Zita is a person has Homosexuality Disorder." because it was classified as a mental illness, using the exact same criteria and diagnostic manual as we use for ASD. Read more about that rarely talked about tidbit here.) The normalization movement within the homosexual community (see Cass Identity Model, specifically "Identity Pride" and "Identity Synthesis") demanded that normalization happen on a global-scale and not only within the LGTBQ community.

In many ways, the process of identity formation of the Autistic community parallels that of the LGTBQ movement, and it is exciting to see how Acceptance, Pride and Synthesis are being promoted throughout massive platforms. It will take time, but the message is spreading and the norms are changing. I suspect that within Sam's lifetime, we will see a massive change in the language surrounding Autism, both in the medical field and socially. And, I suspect that I will fall on the 'right side of history'.

All of that was a really, really long winded description to get to my point.

I'm all about identity-based language.

But what I am not all about is identity-appropriation. 

If you go back to my original story (assuming you can remember that far), the parent who chided me for my poor language choices was wearing an Autism t-shirt. A "Proud Autism Parent" t-shirt, to be exact.

This is a phrase you will see a LOT in the Autism community. Autism, despite being a diagnostic descriptor, is presented as being something that the entire family lives 'with'.

Not 'is affected by' or 'impacted by'.

Lives with.

Think I'm exaggerating? Think again.

Image description: Top half of Image is of a black and human eye, with tears streaming down. The pupil and iris are coloured puzzle pieces, interlocked. The bottom half of the image has the following quote in white words over a black background: "Autism causes stress, anxiety, depression, isolation, money, marital and family problems. Autism is a constant worry & is the unknwon. What can we do to change this? Be strong, tay positive, stick together, support each other,  love each other & fight for what we believe in...Our children. X Spectrum Superstars.

In the meme above, Autism is described in entirely negative terms and the "children" are treated almost as an afterthought. Moreover, there is no indication whatsoever that these children grow up to become adults who are still Autistic. The "Autism" experience is described entirely from the perspective of the parent, with the Autistic person's experience not being considered at all.

Image description: Image is of black words on a white background with two puzzle-piece ribbon symbols framing the title "Autism". Quote reads: "In what can feel like a lonely world at times, sometimes all it takes is another Autism Parent to hold out their hand and say "I understand"...for we speak the same language, the language of Autism, and we keep each other strong, we are Proud Autism Parents, and together the world is no longer a lonely place. Looking In/Looking Out - Our Autism and ADHD Family.

 In this case, the Autistic child's experience isn't even acknowledge. Once again, the entire focus is on the experience of the parent and of their 'loneliness'. The parent is the one who 'speaks' Autism, and they are the ones who build the community.

I could pull out another fifty or more examples of this, but I think you get the point.

And if you don't, let me spell it out for you clearly:

The vast majority of the dialogue regarding the experience of Autism is being had by people who do not 'have Autism' (are not Autistic). 

You see, while being "Autistic" is socially perceived as deviant and a negative label, being an 'Autism Parent' is socially perceived as an admirable and positive quality (which I wrote about yesterday). So while we shun the 'Autistic' label, we freely apply and even encourage the label of 'Autism Parent' and revere those who proudly wear it.

Therein lies the horrible irony of the Autism label.

The very same people who would chastise you not to define their child by their disability define themselves by it. This, despite the fact, that they are only vicariously affected by it.

It is extremely difficult for me to put into words how not okay this is, but I'm going to try.

To do this, I need to introduce yet another concept: Cultural appropriation.

(Note to self: Maybe this should have a been a blog series instead of one colossal post? Duly noted for future reference.)

Put simply, cultural appropriation is the act of inappropriately taking and using cultural artifacts/ideas/symbols etc. from one culture (usually in a minority setting) and using them inappropriately in your own culture (usually by the majority stakeholder).

There's been a lot of writing about this lately, from Miley Cyrus and 'ratchet culture' to the hipster headdress trend.

Suffice it to say that the things that define a culture hold an important and semi-sacred value in their traditions, customs, language and history. It is not ok to use these elements without an acknowledgment and respect for their importance, nor is it ok to devalue them by negating their cultural importance.

In short, unless something belongs to you and is part of your experiential heritage, don't claim it as your own. 

So, what does this have to do with Autism? Well, everything actually.

Culture is often only thought of in terms of race and ethnicity. But the truth is that, in the anthropological and sociological sense of the word, culture extends far beyond that and refers to the subcategorization of people into groups that are dictated by common phenomena beyond their physical characteristics.

Image is of a chart defining culture. At the top of the chart is the word 'culture' and extending from it are the words Tradition, Custom, Language, Ethnicity/Race. *I will be seeking assistance in how to describe this graph accurate, so please be patient with me as I attempt to do so.

The concept of Disability Culture is a relatively new concept, likely due to the fact that, up until recently, people with disabilities were not considered 'human beings' by medicine, the law, and society. However, today- as evolutions in technology have allowed for disabled people to have more access to self-advocacy and as laws/practices are starting to evolve away from dehumanization (far too slow, but that's another blog post topic), the world is beginning to recognize that there is, in fact, an entire culture surrounding the experience of being disabled. This culture is being explored through art, music, writings (political and apolitical), clothing, technology and the development of social language.

This culture is not only valuable for its numerous contributions to society. It is valuable in that it is acting as a catalyst of empowerment and change for people with disabilities of all types and severity. 

However, not all cultural elements are reaching social-acceptance at the same rate. While society is leaning more and more towards acknowledging that physical impairments do not limit one's humanity (as evidence by the massive shift towards mobility-friendly access in public spaces), many forms of disability (particularly social, mental, and cognitive impairments) are still incessantly dehumanized and those within those subgroups are continuously the subject of stigmatization. 

So while it would be seen as completely inappropriate for a mother of a quadriplegic child to say that "they" (referring to the family as a whole) are paralyzed, we do not bat an eye at the idea of an "Autism Parent" saying that the entire family "lives" Autism. 

In fact, in the 'Autism Parent' community, it is not at all uncommon for parents of Autistic children to actually claim a better knowledge and understanding of Autism than Autistic adults, a trend that is deeply terrifying. 

So, not only are they taking away the cultural artifacts of Autistic people (including self-identifying language), they are actually attempting to minimize their experience and kick them out of their own sub-culture. 

What they are attempting is cultural genocide.  (Which pairs nicely with the actual genocide-based advocacy of 'cure' based groups like Autism Speaks)

When the "Autism Parent" claims that title as their own while simultaneously stripping their children of the right to self-identify, they are saying, beyond the shadow of a doubt, that the Autistic person does not have the right to their Autistic experience. They are saying that Autism is about the parent, not the Autistic child. And they attempting a mass exodus of the Autistic experience within the Autism culture and community. 

What this boils down to is simple: If they can not rid the world of Autism, they can disempower it enough that it can not fight back against the stigma and will remain marginalized. In this way, the conversation will remain focused on the needs of the parent and the families, and not on the needs of the Autistic person. This contributes to the further stigmatization of the Autistic person, as well as the continued elevation of the "Autism Parent", thus perpetuating the cycle of oppression.  

As long as we continue to allow for dialogue regarding services, needs, supports, and what it is like to "live with" Autism to be dictated by us, the parents, and not by the Autistic people themselves, Autistic people will never be able to achieve social normative status and live in a world where they are not dehumanized and demonized. 

So please, don't call me an "Autism Parent'.

And please, stop calling yourself one too. Especially if you are not in full support of the Autistic self-identity movement or use 'person first language'. 

And, unless you are Autistic, do not say that you 'live with Autism'. 

If you want to support your child/sister/aunt/friend and all Autistic people in the world, start by respecting their culture, respecting their right to self-identification, respecting their right to self-autonomy and respecting the fact that it is time for parents to take a massive back seat in the conversation.

Unless you have Autism, you do not know Autism. 

You are not an "Autism Parent". You are your child's parent, and that is all. 

End of story. 

Rant: On "Autism Parents" and Superheroes

I’ve always felt a little on the ‘outside’ in my life.

I’ve generally never had a hard time making friends, and have typically been readily accepted in most social circles, so this feeling hasn’t necessarily been due to any external forces.

But I’ve always known that, on many levels, my mind works differently than many of my peers. I process information very rapidly. I process emotions very (very) slowly. I experience the world more through sounds than I do through any other sense, and often operate a bit on autopilot when things get too overwhelming.

And, for better of for worse, I have a tendency to reach very different conclusions from my peers when presented with the same set of information.

Being a person who approaches things pragmatically, forging a community- in the ideological sense- has not been something that has come easily to me. There is no one personal philosophy that defines me enough that I feel like I can connect to others through it on a global scale.

While I breastfeed, co-sleep, baby wear, and follow the vast majority of the principles of “Attachment Parenting”, it’s never been a label I have related to. I have always considered myself to be a bit of a hybrid between an anthropological parent (ie: parenting in ways that help society function at its fullest, with practices that change and evolve as society changes and evolves) and a scientific parent (ie: parenting in ways that are dictated by healthy biological development, no different really from our animal counterparts), and my research in both of these areas has fuelled the decisions that Jason and I have made regarding our children’s early rearing.

Now, don’t get me wrong. I love my “AP Parents”. They are some of the most beautiful and deeply connected people I have had the pleasure of meeting. But I have not generally applied the term to describe myself.  I always considered our parenting to be too complex to be summarized by a set of doctrines and practices.

I don’t “AP” parent.

I just parent.

And, for the most part, that lovely community has always responded with kindness and understanding: We are here for you regardless of how you define yourself. We are your tribe.

Now, as my children are growing older and their distinct personalities are emerging, I am finding myself once again wandering within a community, feeling like an outsider in a bit of a foreign land.

You see, I’m not convinced that there is any “community” more defined, more proud, and more present than the “Autism Parents”, at least not in my own particular neck of the parenting world.

I know some amazing parents of Autistic children. Truly I do. And I would consider some of them to be friends that have provided me guidance, support, and friendship in way that has not often been paralleled in my life.

But I am not an “Autism Parent”.

And every day this distinction becomes more and more apparent to me.

Unlike the ‘Attachment Parent’ label, my reaction to ‘Autism Parent’ is a much more negative one. Not only is this not a term I relate to- it is a term that I reject outright. It is a term that I find offensive on multiple levels, not the least of which being the fact that Charlie does not, at this time, show any indication whatsoever of being Autistic and how I define my parenting experience should probably not completely exclude her from the dialogue.  She is my child, as much as Sammie. She is not an after-thought.

(I also have massive issues with the double-think required to use this type of terminology, but that’s a story for another post.)

(Come to think of it, there are a whole lot of things that I hate about the “Autism Parent” culture and I suspect that I will have an entire series of posts dedicated to just this topic…)

(But, for now, one thing at a time...)

One of the things that really gets to me about the ‘Autism Parent’ movement is the idea that somehow being the parent of an Autistic child has made me “more special” than other parents. And not only more “special”, but “better”- more powerful, more engaged, more dedicated, more patient, more, more, more, more, more.  

The memes abound. There’s a new article about it every day.

Autism Parents are different from all other parents.  They simply ‘love’ their kids more.

Now, I’ve met a fair amount of parents of all walks of life. And I have one thing to say about that:

Bull shit.

Let’s put one thing to rest once and for all:

There is NO prerequisite training, test or other screening process for having an Autistic kid.

This is genetics, people. It’s the combination of DNAs, all interplaying with each other over the course of generations.

NO. God did not hand-pick ‘special people’ to have ‘special kids’, and if he did, I would sure like to have a word with him about the fact that thousands of disabled children are abused at the hands of their ‘special parents’ every single day.

“Autism Parents” are no more empowered to be exceptional parents than any other parent on the planet.

Are there some parents of Autistic kids who are absolutely amazing and make us all sit there thinking “Man, they have this shit nailed?”

Yes.

Just as there are some parents of “typical” kids who are absolutely amazing and make us do the same.

Don’t get me wrong- parenting an Autistic child can be a vastly different experience from parenting a neurotypical one (or so has been my experience from parenting my two diverse kids). Yes, there are different challenges and different struggles. I’m not going to deny that for a second.

But how we deal with that is an entirely personal decision.

There is no “Autism Parent Gene” that gets activated and turns you into a super hero the second your Neurologist hands you a piece of paper to sign.

And no, raising an Autistic child does not necessarily make you a better parent or a better person.  No more or less than raising a typically developing child would.

Parenting is an experience that absolutely transforms you from the inside out, sometimes for the better and sometimes for the worse. Which side of that fence you fall on is- quite frankly- entirely up to you.

So call me a cynic, but when I see crap like this:

All I can think of are articles like this. And this. And this. And this.

And the hundreds, upon hundreds, upon hundreds of different stories we have of “Autism Parents” abusing, neglecting, traumatizing, and even killing their children.

Autism is a neurological difference, not a flowing red cape. It is a part of the identity of the person who is Autistic, not the person who is raising them. 

And having an Autistic kid doesn’t make you a super hero. Nor does it make you a better parent than anybody else.

You aren’t a super hero* for raising your kid, neuro-diverse or otherwise, with love, empathy, support, compassion and respect. 

These are parenting fundamentals, and doing them is the bare minimum of basic human decency.

So, enough with the self-adulation.

edit note: Original text read "You aren't a hero for raising your kid", an unintentional omission brought to my attention by Liam in comments. People can indeed be 'heroes' for being good human beings who share love, respect, support and compassion with their children and with the world. But they are not "super heroes", which implies an ability beyond that of a normal human being, which is the point I was trying to get at in the post. 

Day 3 and already a throwaway post

So, following yesterday's post about my broken tooth, today's post was going to be a deep reflection about the importance of self care.

BUT in doing my self care, I went and got my painful tooth pulled. Finally. After almost two years of on again, off again hell.

And so now I am in serious amounts of pain (freezing doesn't do much for me and even T3s aren't putting much a dent in this one). And I can't really think straight. And I've been sleeping on and off since I got home.

So yeah, I'm going back to bed and hoping that I don't choke on my bloody gauze pad and that the pain has begun to subside by morning.

Goodnight, y'all.

Broken Tooth

I have a broken tooth.

I have had it for six months.  It's a wisdom tooth and I keep meaning to make an appointment to get it dealt with but my life never seems to allow me any time to do so.

Healing from dental surgery is more "free time" than I can afford right now. I don't know how or when  to fit it in, nor can I figure out the logistics of how to do it with Jason's work schedule and my work schedule and kids and all the things that seem so much more important than my damn tooth.

But now,  I think it has an abscess.  And it hurts like hell.

So I suppose I don't have much of a choice anymore.

And once again, my plate is so full that the food keeps sliding off.

There is no baseline for me lately. There are only the fleeting moments where I kick up hard enough to catch one big breath of air before falling under it all again.

So that's my blog for tonight, because my head is throbbing and I can't think about anything else.

Anything except the three hours of cooking and cleaning I still have left to do before Monday hits.

Sigh.  Sometimes it can be hard.

They say self care is one of the most important things parents can do for themselves.

Unfortunately,  they don't tell you how to fit it in.

Edited to add: Got my tooth pulled today in an emergency surgery. It took less than two hours total. And so my entire argument of "no time" was a very powerful lie to myself. I'm glad I can be transparent about that in this space and promise to write a better post about it this month.

Rainbow Coloured Walls

Like most parents of Autistic children, I field a lot of the “What is it like?” question.

It’s a particularly obnoxious one since, up until Charlie was born, I didn’t know any other type of parenting. And, even now, the only thing I really know is what it is like to parent my own children. There isn’t really a universal parenting experience- no more for parents of Autistic children than for parents neurotypical ones.

But, I suppose, there are some things about our lives that do distinguish parenting a child with disabilities from the experience of those that don’t. There are some things that we encounter that most of  my friends will never quite have to worry about, consider, or mitigate.

Consider, for a moment, that you are house shopping and you come upon a Magic Genie realtor. He tells you that he can give you your perfect home. It will be exactly the right lay out, exactly the right size, exactly the right location, and in a completely affordable price point…Perfect in every way and exactly the home you have always dreamt of owning.

Sounds like a pretty good deal, right?

But of course, as is often the case with genies (and with realtors), there’s a catch: Your walls can never be painted. They must always be the colour that they are now.

Now, the rookie shopper will tell you: No problem! I can work with whatever.

And they’d be right.  You can make just about any colour work in most spaces, particularly when you can control things like lighting and decorations.

But a more seasoned shopper knows that the colour of the walls is actually kind of a big deal. Not a deal break- again, this is the perfect house- but a big deal, nonetheless.

On top of that, Magic Genie tells you that you don’t get to know the colour of the walls before moving in. And once you are there, you can never move away.

If you can’t agree to these terms, you must walk away from the home completely.

It’s the perfect home, and you are committed to the long-term picture, so you agree.

And in your mind, you start to ask yourself: What will my walls look like?

You think to yourself: Maybe you’ve lucked out and they will be white! White, while not exactly an exciting colour, does kind of go with every thing. There’s an awful lot you can do with white.

In your mind, you start to decorate your white walls.

And you feel secure in knowing that you can work with what you will be given.

But, life isn’t always that easy.

See, there’s the catch: No one gets white.

Every single magic house has a colour of its own, and white is not among them.

Some houses have very pale blue walls. Others have pale sage walls. Others still are pale taupe.

Some are bolder: a vibrant green, a cool lilac, or a serene gray.

Each of these walls has its own personality, and its own flavour. And, despite your best hopes, they will not match perfectly the white décor you had envisoned in your dreams.

But, for the most part, the colour is flexible. After all, there are a wide variety of different colour schemes that work with a butter yellow wall. While you do need to put in a bit of thought and work with the hue that you have been given, you can walk into most department stores and rest assured that you will find a wealth of different options to accessorize and decorate your space.

And, whatever it is, it is a beautiful colour.

***

Now, imagine that your house has a bright red focus wall.

Like it’s more muted and uniformed counterparts, this red wall is beautiful. But it is also extremely powerful. It is extremely present. It is dominant.

And it doesn’t necessary work with as wide a variety of colour schemes.

You will need to think more intensely about how to decorate your space. You will need to consider the particular decorating needs that accompany a strong focus wall.

 Red requires a different amount of mental work to coordinate. It also requires a different amount of mental processing to become accustomed to. It may not be as easy for every one to adapt to a red wall. For some, it may be really jarring and they may try to find ways to minimize the impact of the wall. However, as we all know, a focus wall is called a focus wall for a reason: it’s the focus. Most efforts to minimize the impact will be in vain, and it is generally best to let the wall dictate the tone of the space.

You will want to pick your décor carefully. It will take time to plan out how to best use the space. You may need to seek out specialized shops to find the perfect picture frames and furniture.

But you will find them. But it takes more time, more energy, more thought, and- often- more investment to get the room exactly the way you want it. But you will get there. 

***

Some of us however,  whether through fate or fortune, walk into our new houses surprised to find them painted in extremely unconventional colours.

Lime Green. Aquamarine. Bright Orange. Fluorescent Pink.

And that’s a whole other ball game.

They don’t make a lot of home decorating catalogues dedicated to teaching you how to work with fluorescent pink walls.

Decorating a fluorescent pink space is a challenge like none you’ve ever undertaken in the history of your decorating life. And, at first, you have no idea what you are going to do.

Some people grieve. How could they have agreed to this? They didn’t know! They were fooled! They were lied to! This is not the deal that they accepted.

(And they would be wrong. This is exactly the deal that they accepted.)

These people will spend the rest of their lives trying to figure out how to get out of their contract and either paint their walls or move away.

Others will dedicate themselves to finding ways to work around the pink walls that they find so offensive. They will hang curtains to cover them. They will use blue lighting to try to conceal the colour. But, at the end of the day, the walls are still fluorescent pink, regardless of what they do.

(These people will often wind up frustrated and will never gain a true appreciation for their home or comfort their space.)

Others still will embrace the intensity of the wall colour. They will learn to love fluorescent pink and will spend the rest of their lives working towards trying to perfect that space and find all the accountrements that will enhance the wall’s natural beauty. They become artists, and learn that the pink walls are an opportunity to turn their lives into living canvases.

Is it more expensive? Yes.

Is it more time consuming to decorate? Yes.

Can it be frustrating sometimes, particularly in the beginning when you don’t have an understanding of how to work with the colour? Yes.

Can the intensity of the colour be difficult to manage sometimes and require more energy from you? Definitely, yes.

But…there is a richness and uniqueness and power that emanates from a pink wall.

And the intensity is exactly what makes it so beautiful.

Your home, while unconventional, becomes a life long labour of love, teaching you to open up your eyes to all the colours of the rainbow.

***

Longwinded as it may be, this is the best analogy I can think of to describe the experience of parenting my children.

When I was pregnant, I naively thought that my child would be like a blank white canvas that I could do with as I pleased.

Of course, no child is a blank canvas. They are all bright and colourful personalities of their own, and while you can impact them, you can not change who they are.

Some of their colours are more typical of what we would expect in children. They fit into the moulds we have create more easily and blend successfully with the world around them.

My daughter, Charlie, is not one of those children. Like a bright vividly-coloured focus wall, she is an insatiable force of life that dominates almost every space she enters. Her incredible thirst for knowledge and for interaction is unlike any toddler I have ever met, and she is already one of the strongest people I know.

To parent Charlie is to embrace the richness and boldness of her personality and to build up a world around her that plays to her strengths. It requires a lot of thought and planning, and ultimately, she and I are discovering that her atypicality may not always fit the mould. She is unlike her peers, but she is unlike them in a way that is generally easily accepted- and even admired- by the world. She ‘breaks’ the social mould, but in ways that are deemed socially acceptable.

To parent Sam is to walk into a proudly fluorescent pink house. There is nothing conventional about him, and his beauty isn’t always understood by others. He doesn’t break the moulds- he is apart from them, functioning independently from almost all social expectations.

The difference in time, effort, cost and intensity of parenting Sam in a way that is respectful of his pronounced differences can not be denied. It is not always easy to build up a world around him that compliments and enhances who he is.

And, as amazing as he is, I am always aware that he will never be considered to ‘fit’ the definition of what we consider a typical person to be.

There are people who spend their lives telling me that I must learn to do everything in my power change him, to cover up his differences and try my best to change his colour into one that is deemed more palatable.

But the thing is that I love his colour. I never expected to have an Autistic child, but I have fallen in love with the complexity, the vividness, the unabashed uniqueness of him.

And, like Charlie, while he doesn’t necessarily fit the mould, I am learning to live in a house that is multi-coloured and multi-faceted. I am learning to take the time to really think of who they are, as individuals, in every decision that I make. I am learning that, while the journey is different for both of them, it is phenomenal one well worth the undertaking.

I love my brightly coloured walls. I love that they are outside of the norm. I love that they have made me rethink everything I thought I knew about the world.

I love living inside a rainbow. That is what parenting my children is like. 

They are more glorious than anything I could ever have imagined on a blank canvas.

And that’s what it’s like to parent my atypical children.  

It’s colourful.