Category Archives: Punch-drunk with Sleep Loss and Feeling Silly

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

Reunited and It Feels So Good: Me and My Inner Girly Girl

No, this isn’t my actual closet. But wouldn’t it be pretty if it were?

profundity: noun.

1. intellectual depth, 2. the quality or state of being profound or deep

I have a confession.  I – originally a very girly girl – have been walking around for some time looking awful.  Not because I don’t have the slightest clue what is flattering or cute.  But because, for so long now, I just haven’t cared.  I have this syndrome some chubby girls get in which I tend to procrastinate buying clothing out of the  desire to buy them “after I lose some weight”.  Intellectually, I’m aware this isn’t a good attitude.  I’m just saying it happens.  Some of us visualize the ideal “me” we want to be and don’t want to acknowledge the needs of the current “me” we are.

I did something shocking in recent weeks.  Shocking and so unlike myself that the word “profundity” comes to mind.

I threw out my entire wardrobe and bought a new one.

It was the realization that someone might get desperate enough to nominate me for What Not to Wear that made me realize I needed a change.  Although not extreme in the kooky or sleazy sense, I’ve looked tired for ages and in dire need of new duds.  But my illness earlier this year forced my hand.  I had been hearing people tell me it looked like I was losing weight, but thought it was maybe 5 or 6 pounds.  Turns out, it was 34.  And, following the death of my father in May, I lost even more.  My clothes – which were limited in quantity to begin with – were falling off of me.   (I’m still thankful it was just my BFF with me when I had that embarrassing tankini malfunction, but that’s a story I refuse to ever tell you.)

So, with a goal of mix and match separates and adding some color to my style, I headed out with a couple of friends and a 30% off the entire store coupon from Kohls– including sales/clearance.  In the spirit of What Not to Wear – though without the $5,000 budget and designer clothing stores – I shopped from the skin up.

I was shocked to discover stress had eaten two entire dress sizes off of me in the months preceding and just following Callum’s diagnosis and the death of my father.  Typically, stress adds weight to me — which is how I got chubby to begin with.  (Peanut butter fudge is a most efficient caloric source, you know.)  But that was before Callum.  Worry for one’s child is a whole different kind of stress.  One I never imagined back in my single days when I thought I had problems.  The loss of my daddy just magnified it.

Instead of gaining weight, it just melted off.  And, though ready for the runway I’m decidedly not, shopping was a lot more fun than 40 pounds ago.  I like the clothes out this season so much more than a couple of years ago.  And I realized it was time for a cool change. I picked things I liked, with fun colors, and bold prints.  I chose dressier clothes, so that I wouldn’t be as tempted to schlep around.

I bought a whole new closet.  And, since I’d done all that, I went and had my hair colored and highlighted. Then I pulled out my rarely-used-of-late makeup brushes and makeup and dusted them off.  And now I know a little how those folks on WNTW feel when they return for their “reveal”.  People were thrilled to pieces.  My coworkers got excited.  My boss was beside herself.  And my little girl, who I confess has rarely seen her own mama dress up, was mesmerized and told me I looked beautiful.  Another “layer of understanding” if ever there were one.

No, not all mothers of autistic children are sloppy dressers.  Many look fabulous.  It wasn’t autism’s fault.  It certainly wasn’t my son’s fault.  Autism didn’t make me stop trying.  I did that.  That’s on me.  I avoided shopping and stopped looking cute long before my son came along, so the only cause for blame is my own rather listless reaction to stress.  Yes, of course there are medical labels for such phenomenon.  But, I’m too busy to go seek one.  And the end result is the same regardless.  As with our children, call it what you want.  The question is always, “What are you going to do about it?”.

I, for one, am going to do better.  Not because I view looking well as a noble characteristic — but because I see it as a necessary one.  I cannot just fall apart or walk around looking as if I might.  I have to enjoy my life – or I won’t be able to enjoy him as much as he deserves.  I, like female shoppers in dark parking lots, have to look the part of someone who could take on the world.  Because I really do have to take on a world.

His.

So, there you have it.  My new clothes.  My new return to feeling girly.  My new determination to not forget myself again.  I never thought the clothes hanging in my closet were symbolic in any way.  But they are.  And, though my new assets are depreciating ones, I’d still say they are a heck of an investment.

FYI:  Later in the day that I published this post, I was contacted by a very nice lady affiliated with Kohl’s (and also has autism in her family) who wanted to wanted to offer my readers a discount they can use online.  It is a 10% off code that can be stacked with other department discounts.  You can use this code until October 24th.  UBLOGTEN

And, no – for you suspicious types, I am not affiliated with Kohl’s in any way myself, nor are they paying me for linking to them or sharing the code.  I just dig their stores and thought you guys might like the discount.  :)

5 Things I Would Do for My Son and Others Upon Winning the Powerball Lottery

Dear Universe, Random Chance, Fate, All Powerful Individuals My Somewhat Suspicious Grandfather Believed Controlled the State Lottery, Etc.,

No, I didn’t address God here.  I do believe in Him.  But I prefer to think He is concerning himself with matters unrelated to state lotteries or NFL football. 

I have heard the unfortunate stories circulating in the past few years about lottery winners who later go on to personal misfortune.  It has occurred to me that this is perhaps the reason you have reservations about letting me win the Powerball lottery.  I know that we don’t actually have the Powerball lottery here in Florida, nor do I actually play it.  But my dad assures me that this should not be a hindrance if I am destined to win.  If it is meant to happen, it will happen.  So, I thought I should outline exactly what I would do with the funds should you rethink the matter and place a winning ticket in my path. 

Here is what I would do with several hundred million dollars:

1. Build a new home — complete with a large sensory-friendly playroom filled with therapy equipment and furniture ideal for preschool learning.  Build a nice guest home a little distance from the house.  Hire a full-time ABA therapist.  Recruit someone awesome with competitive salary and free housing (the guest house).  Yeah, so this one is personal.  But, if I win the lottery, my baby gets taken care of first.  However, he needs socialization and a school.  So…

2.  Put together a team of education experts –some made up of professionals I have worked with in my local school system who are awesome, recruited persons knowledgable in autism and special needs learning, and experts in charter schools and private schools. 

3.  Build an autism charter school or private school here in my hometown.  Staff it with teachers who have experience working with autistic kids, speech/occupation/physical therapists, and ABA therapists and trainers. Design it on a sliding scale of affordability for parents to enroll their children and establish some sort of foundation to assist in keeping it running after the money runs out.  I was an English major.  Somebody else will have to be in charge of that part. 

4.  Found a special needs parent organization designed to establish a chapter in each city – including mine.  The goal being to have a PTA type group looking out for each others’ common needs across a common school system and training some members to be special needs advocates. 

5.  Begin a therapy scholarship for families like ours.  Whose insurance (just yesterday) deemed that their child may not attend locally based speech, occupational, and physical therapy but most drive out of town for 6 therapy sessions per week.  People who can’t quit their jobs to do so.  People who need ABA therapists to travel to remote areas to provide services in little towns that have never heard of ABA.  People who aren’t eligible for any kind of help whatsoever because they are living high on the hog on the equivalent of a teacher’s salary.  People who didn’t sleep a wink last night — eaten up with panic in the witching hours of worry for parents of special needs kids.  Yeah, people like that.

So, you see, I have good plans for these funds.  Certainly better than that guy who put it in the bank and bought an RV, right?  I’m ready, Universe.  Bring it on.  I got this.