Tag Archives: autism

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…

Why I Won’t Be Getting Mother of the Year (Guest Post for WhattoExpect.com)

If you have been a subscriber for a while, you might recognize this one from a year ago.  It’s my latest guest post for WhattoExpect.com.  We’ve had some developmental gains in the past year, and I’m still learning how to tame my fears.  But this was a snapshot in my journey, and it was a post I’m somewhat proud of.  🙂  

wteI used to believe that clarity was epiphanic. As in, you don’t understand and then — presto whammo! — you have an experience, an epiphany, that brings about full insight and you are that much wiser for it.

I know better now. Parenting a child with special needs is good for that, teaching you all kinds of lessons you never volunteered to learn.

I now know that understanding is multi-layered. Clarity comes in concentric circles. Just when you think you have come to a level of peace and acceptance, something occurs and you realize that there is a whole deeper level of understanding with which to contend. This is how the painful and stressful stuff gets you. It peels back another layer, and there you are again.

I’m beginning to understand this a bit better now. Realizing that true understanding, acceptance, and sometimes grief are forever cycling, beginning again with each new layer revealed. Comprehending that the things I am worried about now with regard to my special needs child will simply evolve into more complex facets of themselves.

A week ago, we took our kids on our first road trip to visit family in North Georgia. It was an eight-hour car ride and things had been going quite well. Callum was so easygoing, happy to look out the window, stim, babble, and giggle. Bronwyn christened us into traveling parenthood with endless bouts of, “Are we there yet?” — which, at four, is not unexpected. I found an awesome classic country station on the radio and got my southern belle on belting out fun singalongs like “Living on Tulsa Time” and “Family Tradition.”

I felt normal. Positive. High-spirited even.

Just a couple of hours away from our destination, Sean and I decided to break for lunch. We chose a McDonalds with a play area — determined to allow the kids some time to run their little legs off a bit. And it was a really nice play area — sectioned off, indoor, safe, complete with tables and even a toddler zone. Even the parents were all nice — smiling at others and encouraging their children to be careful with the littler ones. It should have been ideal.  Continued at What to Expect…

Letter to the Family of Mikaela Lynch

broken heart

This is but one of many posts in the event “An Outpouring of Love for the Mikaela Lynch Family”.  

Last summer, my then 3 year old autistic son wandered out the front door of our home.  His 5 year old sister was trying to help her daddy bring in the groceries and left the front door cracked.  My husband thought our son was with me.  It took several minutes for us to realize that he wasn’t in the house.  That’s when we both looked at each other in horror and remembered the groceries being brought in.  We raced outside.  I was frantically screaming his name while reaching for my cell phone to call the police when I heard my husband call out from the back yard that he’d found him.   I have never been so grateful in my life.  The idea that someone or something that might have harmed him could have found him –instead of us– still chills me.  I’ll never forget that moment.

My husband and I are loving and responsible parents.  We have bolt locks and chain locks at the tops of our doors.  We have an alarm system we set to instant alert when we are inside our home.  We use our car’s safety child locks.  Even in the grocery store, I keep one hand on my son’s leg (sitting in the buggy) while reaching for the milk.

But he managed to walk away unnoticed anyway.

That’s because life is unpredictable.  It’s because I cannot afford a bodyguard and full time nanny.  It’s because we are just human –not computers –and our brains aren’t so good at multi-tasking.  It’s because our unique children’s minds and spirits are often drawn to the very things that can harm them.

Your loss is unspeakable.  And, yet, while you are going through the first dark days in the club that no parent ever wishes to join, you are being attacked.  Attacked by some in the media – who value contention and traffic over truth.  Attacked by average people – who do not understand autism and have never walked in your shoes.   All this while likely suffering the greatest attack of all –  the heartbroken regret of your own mind, bashing you for your lack of godly omniscience.

It’s not your fault.  Anymore than natural disasters, plane crashes, or cancer.  Those of us who have walked in your shoes – that of being a parent to an autistic child – have all experienced close calls and the subsequent emotional beating we give ourselves.  No, we don’t begin to know the pain you are in right now.  But, I assure you, we are haunted by it.  Haunted because we know that your child could so very easily have been ours.  Haunted because we know too well the giant bulls-eye an especially vulnerable child carries in life.  We are sickened by the pain insinuations of parental neglect must have on you.  We know the love you have for your daughter.  We know how hard you worked to help her meet the challenges of a very confusing world.  We know.

shield

When I heard of the contentious “news reports” directed at your family, it reminded me of an infamous “church” who seeks to further their own notoriety by protesting the funerals of innocent Americans.  As if, by creating a media circus of a family’s grief, they could further their own “cause” — in this case nothing more than the pennies earned on each click of the mouse.

But then I thought of the thousands of people who have made that church’s efforts futile by a simple act — a symbolic shielding of those protestors from the view of the deceased’s loved ones.  I thought of a local family targeted by that group and how they were comforted by nothing more than the presence and spare bedsheets of complete strangers.  No, I am not naïve enough to think that a flash blog will help to shoulder any of your grief or deflect the outrageous criticism directed toward you.  I know we are too late to prevent you from hearing those ugly insinuations.  But please know this post — along with hundreds of others — to be our sincere effort to try.  And though we are not likely to ever meet in person, know the collective arms of special-needs parents everywhere are wrapped around you in love and empathy.

If you have a child on the autism spectrum and would like information on autistic elopement — along with a link to a kit to assist you in a wandering crisis, visit AWAARE.

Ethical journalists treat sources, subjects and colleagues as human beings deserving of respect. Journalists should: * Recognize that private people have a greater right to control information about themselves than public officials and others who seek power, influence or attention. * Show good taste. * Avoid pandering to lurid curiosity. * Use special sensitivity when dealing with children. * Show compassion for those who may be affected adversely by news coverage. — (http://www.spj.org/ethicscode.asp)

One click on this image will send a message directly to the irresponsible publication in question — without rewarding the “reporter” with pay-per-click publicity. 🙂

An Outpouring of Love for the Mikaela Lynch Family

blog loveToday, the body of 9 year old Mikaela Lynch was found.  Like so many autistic children, she wandered off and was eventually drawn to water.  My heart breaks for her devastated family — who have since been the targets of cruel accusations from those who know nothing about how easily such a thing can and does happen to our children.

This could have been my child.

Please join those of us in the autism & special needs community on Monday, May 20th in writing a blog post (bloggers) or a Facebook status update (non-bloggers) in support of Mikaela Lynch’s family.

We want to flood social media with love for the Lynch family and those who have suffered similar losses — under the cruel scrutiny of media and those who judge without knowing of what they speak.

If you would like to be a part of this movement please share this event & help us get the word out!

Note:
1) We feel it is important to NOT use Mikaela’s image without the consent of her family, now that the worst has happened.
2) We also do not want to send free traffic to those who have – without cause – cast suspicion on her family and other families who have experienced similar tragedy. In voicing your support, please do not link to or reference the journalist directly. She’s had quite enough fun already.

He Proved Me Wrong: On Autism and Presuming Competence

mirrorOne of the phrases that you hear a lot in the autism world is “Always presume competence.”  If you haven’t heard the saying, it’s a simple concept.  Autism is a neurological issue in the brain –not a mental illness or intellectual disability.  Yet, some people assume that it must necessarily coincide with an intellectual disability.  (Which is just an incorrect as assuming that everyone with autism is a genius– another autism myth.) Autism exists in persons with widely different intellectual abilities.  From the intellectually disabled to the average Joe to geniuses.  So, because we currently lack the ability to assess the intelligence of the severely affected, we don’t know what is happening in their minds.  It might be that a perfectly intelligent person is hidden behind his or her autistic traits, and we simply don’t know how to interact with them.  And it could also be that an autistic person may be intellectually disabled and lack – to varying degrees – the ability to comprehend what is happening around him.  But, in the absence of knowing for certain, then we simply must give such persons the benefit of the doubt.  I would certainly hope that – if I were in their shoes – the same would be done for me.

But “Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right.

When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed.

But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening.  Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make.

Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing.

My smart little stinker is proving me wrong. And I’ve never been so happy to be wrong in my entire life. I worried that he would lack the capacity to advocate for his own needs. That worry ate me alive inside. It haunted me. I was stuck, and I couldn’t get unstuck. It wasn’t that I didn’t believe in my head what others were saying.  But faith is hard in the absence of proof.  My fears for him have been impacting my perception of what he knows and can do.  That has led me to an important realization.  I must tame my fears.  I must accept that fear is nothing but a good survival tool.  Like every emotion, it has a purpose.  It makes us run from danger.  But the only danger with regard to believing in his abilities is the off-chance I’m wrong and suffer the disappointment.  And my fear of disappointment is a selfish reason to give in to worry.  Not disappointment in him, of course, but disappointment that he might not be able to direct his own life.

I have always been a believer in “Prepare for the worst, and you’ll never be disappointed–only pleasantly surprised on occasion.”  Which is a very good motto when building bridges and skyscrapers.  Unfortunately, it isn’t such a great motto when raising developmentally delayed children.  For, like all children, they see themselves reflected in our eyes.

Callum CheeseToday, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked.

So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.

And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

Pranking Autistic Pre-schoolers and Other Ill-Advised Pursuits

Bronwyn, my 5 year-old, has discovered YouTube.  For the most part, this is a good thing.  She watches kids’ music videos, children’s stories, and monster makeup tutorials made by other kids.  She enjoys these “tatorials” so much that I can hear her “filming” her own videos, speaking directly to her audience as she discusses how to do such things as washing one’s own hair, counting to 100 by 5’s, and so forth.  It’s cute, but I fear she is going to ask me for her own channel soon.  No, she won’t be getting one.

Recently, she asked if she could watch some little girl “pranking” her family members.  The pranks were innocent enough, so I allowed it.  Big mistake.  Now she is stalking our home, lying in wait for some way to prank us all.  (You should have seen her delight when her daddy discovered the salt in his morning cup of coffee.)  Really, it’s been kind of cute watching her tap into her imagination, although we did have to have a discussion about funny vs. mean pranks. 

You probably have guessed where this is going.  Yes, my little stinker wants Callum to join in the fun.  So I explained to her that her little brother probably wasn’t going to appreciate being pranked and that we should all refrain from doing so.  Being a little Choleric, she of course ignored my advice and set about pranking Callum.  It didn’t go well.  He thought it was funny when she jumped out at him from behind a door, but that’s where the hilarity ended.  Hiding his candy, letting the water out of his bathtub, and touching ice to the back of his neck were all spectacular disappointments as well.  (Which earned her repeated trips to time out in her room.)  So I’m going to go out on a limb here and state emphatically that playing practical jokes on autistic preschoolers is ill-advised.  Somebody alert the media. 

I must say that I was impressed with Callum’s handling of it all.  He may not have much language, but he has communication.  And, boy, did he communicate.  He yelled, growled his displeasure, and – understandably for any long-suffering little brother – gave her a little shove.  A clear case of self-defense, so he escaped prosecution. 

True Story – “How a Hog Pen Saved Me from Death”

As for my daughter’s love of practical jokes, I blame my husband.  She inherited it from him – along with his nose, a suspected case of ADHD, and a decidedly grumpy morning demeanor.  (It has been suggested to me by her teachers that I have her tested for gifted.   Let’s just attribute her staggering intellect to me, shall we?)  I’m more like Callum.  I don’t like surprises.  I have sensory issues.  And don’t even think about messing with my food.  Nope, I don’t like being on the receiving end of a practical joke at all, though I confess to having orchestrated a few really good ones.  (The best one nearly got me killed.)

But you know what I love?  The fact that my daughter loves her little brother so much that she constantly tries to find ways to entertain him.  Her solutions – at 5 years-old – leave much to be desired.  But her little spirit is willing, and – for the most part – so is his. 

How I look forward to seeing the trouble these little monsters get into together.  J

 

Siblings are the people we practice on, the people who teach us about fairness and cooperation and kindness and caring, quite often the hard way.

– Pamela Dugdale

 

 

 

7 Things You Might Not Know to Ask for When Transitioning Your Autistic Child to Middle School

“Middle school” is a scary phrase for most parents. Thoughts of your baby wandering around a big school, trying to find his classes and being run over by much bigger 8th graders are frightening. He will no longer be cocooned in the safety of his elementary classroom with a teacher who knows him well, and there is the expectation your child will be able to function more independently. But what if your child is on the autism spectrum? What if he has difficulty advocating for his needs? What if he is difficult to understand? Or becomes overwhelmed? How do you rest easy knowing that his differences may make him an easier target for bullies?

I am a middle school teacher/media specialist and an autism parent. In my 15 years of teaching middle school, I have encountered many children on the autism spectrum. Some struggle and, yes, some do quite well. I have learned small things can make all the difference for our special kids. Unfortunately, many parents don’t know they can ask for special assistance. Without the proper plans in place to begin with, it can take months or years for solutions to occur to teachers or administrators.

Every child is different — autism or not. The following ideas are things I have seen to be most helpful for spectrum kids surviving middle school:

1. A 5-minute early pass. If your child is overwhelmed by loud noises or people bumping into him, passing time in a middle school hallway can be upsetting. Ask for a laminated hall pass to leave each class five minutes early. Your child will then be able to use the restroom and make it to his next class in peace. A pass may also curtail bullying, which often occurs in the bathroom or hallways. Deans and guidance counselors utilize such passes for students for various reasons and it won’t hurt to have one. If you find your child doesn’t have a problem in the hallways, he can simply choose to not use it.  (This post is continued on WhattoExpect.com.)

On Writers Block, Mud Wrestling, and the Autism Blogosphere

Alternate Title: What Happens When Flappiness Wakes Too Early and Gets to Thinking Without Any Idea of What She Plans to Write

Today my heart is waiting on a phone call that my mind knows won’t be coming.  A year ago today, my daddy called and asked me for the last time, “Will you be my Valentine?” – a little tradition between us that I loved.  A tradition that my little girl won’t get to remember about him. My heart is heavy.  I wish there was a place I could safely set it and not feel these raw emotions for just a few hours.  But grief doesn’t work that way. It’s been a hell of a week.  For personal reasons I can’t divulge and other dramas I don’t want to.  Since I didn’t already have enough on my plate, pneumonia decided to vacation in my lungs.  I’m tired.

I haven’t written much lately.  It’s not because I have nothing to say.  On the contrary, I have too much to say.  All of the thoughts are pushing and shoving, trying to get out of the door in my mind.  And since I don’t like crowds, I’ve just been sort of sitting back and waiting for them to calm down and line up in some semblance of order.  But the mind is a very uncivilized place.

So is the autism blogosphere.  If you aren’t a part of it, let me suggest you avoid it.  There’s a war going on right now.  It’s ugly.  Factions of advocates are angry with one another.  They bond together over whom they mutually hate, planning strikes and counter strikes in a war of words that no one is winning.  We live in a world where recent generations have little understanding of the commonly accepted rules of debate.  Thinking is very black and white, and one’s opinions of a single subject determine whether or not he is viewed as a person deserving of kindness and respect.  Autism bloggers write posts expressing their views, and – rather than simply commenting with a reasoned disagreement – others seek to discredit them by questioning whether they have a right to be heard at all.  Name-calling and personal attacks become a game whose winner is determined by the number of shares and likes received.  Because the subject matter is so close to the hearts of the participants, all of this is easy to get caught up in.  I know.

But today, I’m thinking about my father.  A man known to never say a bad word about anybody.  He was an attorney, and he knew a lot about arguing.  When you practice law for 40 years in a small city, you know all the players.  Every judge and attorney you know and like has been both on your side on cases and has worked against your side on cases.  You duke it out using the rule of law.  You win some, and you lose some.  But, when you bump into those folks at the deli, you don’t hold a grudge.  They made arguments that you didn’t agree with and maybe even won.  They may have won a case you felt passionately about and now saddened for your client.  But there isn’t an assumption of evil intent.  You don’t race out and publish articles attacking them as lawyers.  You don’t claim they have no right to practice.

Now I know that autism advocates aren’t necessarily lawyers.  It’s not a parallel for several reasons. But I was raised with this mentality.  That you don’t have to hate someone to disagree with them.  You don’t have to make it your life’s mission to discredit them.  You don’t need to be unkind simply because they see things differently.  You can argue and reason and even declare their statements to be illogical.  But you are never going to find anybody in this world who agrees with everything you do.  And you will wear yourself out and become a very unlikable character if you go around expecting and hysterically insisting that they do.

I do not require my friends to agree with me on every important issue.  I have friends who are pro-choice and friends who are anti-abortion.  I have friends who are pro-gun rights and friends who are terrified of guns.  Gay friends, straight friends.  Jewish friends, Christian friends, and even a couple of ordained witches.  I am positive that a dinner party with all of these folks would get lively.

The problem with the blogosphere is that the people behind the blogs aren’t really real to readers.  You see a joke, assume a tone, take issue with a perhaps unfortunately worded sentence and – in the absence of any other knowledge of that person – a real human being becomes just a viewpoint that you hate.  Unlike co-workers or acquaintances whose views you might disagree with, you don’t know that this blogger donates her time at nursing homes, feeds the poor, received a cancer diagnosis, makes from-scratch chicken soup for her neighbors, or whatever.

Fifteen years of working with middle schoolers has taught me something.  (Actually, middle schoolers teach you a lot of things.) I have had to counsel more kids than I can count who are caught up in some sort of drama.  Friends who become enemies by lunch time.  Girls who insulted each other on Facebook.  Every day of the week.  And what I have found is that when you take two people who are passionately in disagreement, being egged on by an enthusiastic audience, and instead take them to a side room and close the door, they will eventually speak to one another.  It takes a long time, but usually all it takes is one telling the other, “This is how I felt”.  And the other usually says, “I didn’t intend to make you feel that way.  But this is how I felt.”  Despite all the animosity and stubbornness, they will usually find common ground and make a truce.  I’ve rarely opened the door and found them still mortal enemies.  They still might not agree, but they have become real to one another.  Usually, you don’t have many problems after that.  Sometimes, they become friends.

Here in the blogosphere, we cannot do that.  Even in an email or private message.  One’s mind interprets the words sent in the context of what one already believes about a person.  They remain just a symbol of what you disagree with.  Combine that with the anonymity of the internet, and you have a recipe for meanness.

I have been the subject of criticism this week and read some mean comments about me.  People who like me have jumped in as well.  Friends of those on both sides have gleefully infused themselves into the drama.  All hell broke loose.  And I find myself sitting here, early in the morning, wondering how to scrub off all of this caked on mud.  Realizing that everyone in the wrestling ring is also covered in it and unrecognizable.

But there is no little room to go into in which to solve our differences.  I remain the symbol of a viewpoint, as do they.  I want to disengage, but I sincerely believe the issues too important to abandon.  A friend told me last night that I just don’t have the stomach for all of this.  And I think she’s right.  I don’t like conflict.  I don’t like people not liking me. I don’t like accusations I know to be untrue but feel powerless to correct.  This ride – blogging – has a been a wild one.

I have been sitting, staring at this screen for several minutes now.  But I still have no idea how to wrap this up neatly.  Except to say that, aside from anything having to do with autism or parenting, it is my sincere belief that the first rule of discourse is kindness.  That we must remember that those whom we disagree with are not necessarily evil.  They have their own experiences that have flavored their perceptions, and those perceptions are every bit as real and heartfelt as our own.  The problem is that most people simply don’t have the right words to convey to others who they are or where they are coming from.  Not really.  We try.  We fail.  We try again. But there aren’t enough words in all the combined languages of Earth to portray a single human heart.

And there is nothing to be done for that but to keep on trying.  While trying to keep in mind that most people really are good at heart.  Most believers in any cause are sincere and want to do good.  Whether or not I agree with them is irrelevant to how they deserve to be treated.  With respect, with civility, and with the benefit of the doubt I believe every human being should be willing to give to another — that we are all just trying to do the best we can with what we have and know.  It’s a hard principle to remember in the heat of anger.

But it’s the best mud repellent around.

“I hope that one or two immortal lyrics come out of all this tumbling around.”   -Louise Bogan

What Autism Means to Me

When asked to write about what autism means to me, I jumped right in. I had a metaphor ready, and I set my fingers to the keyboard. But everything I typed in my first draft was no good. So, I tried to look at it from another perspective. Then another. Before I knew it, this simple question gave me a serious case of writer’s block. It seemed that no matter what I wrote, someone would take issue with it. Somebody would angrily declare, “That’s not what autism is to me!”

And he’d be right. Autism can be described. But it refuses to be defined. That’s because autism will never mean the same thing to two people. Especially if those people are coming from different perspectives. Parents vs. teachers. Grandparents vs. parents. Science vs. conspiracy theorists. Parents of “low-functioning” children vs. “high functioning” self-advocates. The media. Public perception.

It’s a lot of cooks in the kitchen. Their problem is that they can’t all agree on what they’re cooking. They all want different things. They all approach autism from their own subjective experiences. They observe autism from their respective places and report back to the world – which constructs its concept of autism from these reports. And that is problematic.  (This article is continued where I’m guest posting today at A Dog for David…)

When Siblings Have Special Needs

My beautiful Bronwyn.

Our siblings. They resemble us just enough to make all their differences confusing, and no matter what we choose to make of this, we are cast in relation to them our whole lives long. -Susan Scarf Merrell

When my husband and I decided to start our family, I knew one thing right off. I wanted my child to have siblings, and I wanted them to be close in age. Having been an only child myself, I envied my friends’ boisterous households. Say what you want about the benefits of being an only child. But playing with flashlights under bed sheet tents just isn’t as much fun when you’re by yourself. And now that I have mourned alone the passing of my father and am dealing with the declining health of my mother, I have a greater understanding of what a sibling really is.

So, within 11 months of my daughter Bronwyn’s birth, I got pregnant again. When she was 20-months-old, we were blessed with her brother, Callum. Having two babies under the age of two was quite an challenge, but I had all sorts of pre-conceived notions of how close they would be, how well they would play together, and how they would one day have each other when their father and I are no longer here. Visions of little league, dance lessons, scout meetings, and excited Christmas mornings danced in my head. And I briefly enjoyed the illusion that life would be what I had ordered up.

Continued at What to Expect, where I am guest blogging today…