It only takes one bad apple…

If only we were dealing with just one bad apple. If only…

I’m noticing a trend.  One doesn’t have to be highly enlightened or even have above average observation skills to see it either.  It’s appallingly obvious.

We autism parents deal with an inordinately high number of bad apples.

Bad apples that do not listen, do not understand, do not empathize, do not sympathize, do not care, do not do their jobs well, do not have any manners, do not show any respect,  do not mean what they say, do not say what they mean, do not do what they say, do not say what they do.  Bad apples of all shapes and sizes.  Bad apples in abundance.

It would be really nice if the bad apples could simply be plucked from the group and tossed to the side like so much garbage, allowed to decay out of sight and out of mind, leaving an open slot for a potentially good apple.

Our current most egregious bad apple is the Special Education Coordinator for Hank’s school.  I call her Spitch.  I’m sure y’all are smart enough to guess the origins of that moniker.  She attends all of Hank’s IEP meetings, four so far this year.  She puts a big smile on her face and tells us how much she cares about Hank’s education.  I don’t believe a single word that spills out her bad-apple-piehole.  We asked for a very specific educational service at the beginning of the year, a service that everyone but her agrees is reasonable and necessary.  She has offered several alternative solutions that really are not solutions at all.

I am tired of this game.  An entire half of a school year has passed already.  Too much time has been wasted, and I’m beginning to think that this was Spitch’s plan all along.  Stall, stall, stall…then the year will be over, and she will not have had to imperil her precious budget.  I totally fell into her trap, but I’m disentangling myself from her snares.

I have to figure out a way around, over, through this bad apple.  I’m enjoying the visual of picking her up and tossing her aside, most likely into heavy traffic where her mealy apple bits get splattered far and wide…or, just dropping her to the bottom of an empty garbage can where she can rot all alone.  Can apples cry?  Okay, enough with my furtive imagination.

I’m thinking and plotting.  This bad apple is going down, one way or another.

While I haven’t been writing here…

I have been doing a little bit if writing elsewhere.

This is one of a few pieces that I contributed to a book that is being released in April 2010.  This is the unedited version…over 1000 words!!  I received a request from a lovely young lady to trim it down to 250 for the final submission to the publisher.  I managed to get it down to 399.  Yay me!!

Dealing with autism is just plain hard, regardless of where your kid falls on the spectrum. The problems and needs vary according to each child, but it all boils down to one simple concept.

Your kid is different.

Describe them however you like: quirky, unique, special, extra-normal, hard-headed, beautiful, frustrating, wonderful.

Describe autism however you like: a disease, a disorder, a genetic condition, a blessing, a curse, just a normal part of everyday life.

Approach the treatment of autism however you like: Biomed, special diets, Applied Behavioral Analysis, occupational therapy, medications, no treatment at all.

Despite the many ways that we as parents of autistic kids can differ, there is one way in which we will always be the same. Our kids are different, and that is just hard. The reality of our kids’ struggles is something that we face every single day, and it certainly takes a toll on the mind, heart and body.

I have had some bad days, and, no doubt, I will have more. However, while I am certainly not reticent to air my emotional laundry, I do not want to do that right now or in this section of the book. I would rather write about a few important conclusions that I have come to as a result of my bad days…and my good days…and the space in between.

Feel It

Life’s many difficulties are bound to stir up all sorts of emotions, but I have found having a child with autism to be particularly emotionally confounding. There are so many instances in which you simultaneously feel completely opposing emotions. Joy and grief. Acceptance and anger. Guilt and absolution. Other times, one emotion, usually a bad one, is so all encompassing that you can physically feel it pressing in on you. During the good times, you can feel a high that no drug can induce. One thing that I know for certain, whatever you are feeling, it is completely normal.

In my experience, it is best to let yourself feel all of them. Recognize them and sort them out into neat, little categories if you want to. My preferred labels are “totally awesome – enjoy it while it lasts” and “really sucky, but it’s just how I feel right now” and “totally counterproductive – stop right now.” Just feel it, whatever it is. If you try to ignore or shave the blunt edges off of anger, guilt, grief, it may retreat only to return later stronger and meaner for not having been recognized and dealt with in the first place. If you try to tamp down your joy because you think it will hurt that much more when a downward spiral hits, you are depriving yourself of the best moments in life. Ride the emotional roller coaster. If you are not constantly trying to get off the ride, you might find that the highs are more enjoyable and the lows are more tolerable.

Share It

All those feelings that you have? You don’t own the exclusive rights to them. Others are being knocked over by that very same emotional tsunami. Others share the same joys and heartaches. You may feel totally alone and cut off from the world, but, honestly, that is some pretty self-centered thinking. You’re not living in a vacuum in which you are the only one effected by your child’s diagnosis. Your spouse or partner, the person sleeping in the same bed with you every night, is struggling too. You need to share your feelings, communicate, confess your fears and bad thoughts to each other. Do not assume that he is doing just fine. Do not assume that you baring your soul will bring him down or increase his burden. There is no good reason for you to both seperately carry around the same weight. If you share it, it will lighten the load on both of you. Neither of you have to feel alone.

I used the example of a spouse, but the “share it” rule applies to other family and friends. There are other people out there feeling the same way that you do. Find them and build a community for yourself in which you feel safe, in which you can share without being judged, in which you can give and receive support. The autism experience strips you of all pretense. You need to surround yourself with people who don’t mind you streaking around emotionally naked, the kind of honest folks who will likely strip down and run around with you. Those are the people that know, because they feel it too.

Tell It

There is a whole other sub-set of people in your life that you might not want to share it with, but you just might want to tell it to. The co-worker set, the lady at the bakery that knows your name because you come in too many mornings to tank up on coffee and donuts set, the Judgey McJudgerson in the grocery store set. I do not feel that it is my duty to inform the masses about autism, and I don’t necessarily work the big “A” into every casual conversation that I have. However, I find a certain comfort in talking about it. Some times, it is an effort to educate in general. Other times, it springs from a desire for people to know me and to know my child. I tell it in the hope that the next time that I am having a crap day, that person might just understand and give me a supportive smile…or that the next time Judgey McJudgerson sees a child acting oddly or tantruming in a store, she doesn’t turn up her haughty nose or scowl or say something demeaning to that parent because just maybe she understands that she can’t possibly know what that child and that parent are dealing with…or when my co-worker sees a child in her family that has issues, she recalls our conversation and gets earlier intervention for that child. I like to tell it, but that’s just me. Not everyone does, and that is just fine too.

Screw It

Some days just suck, for any variety of reasons. I won’t bother to give examples; you have already experienced them. Sometimes you just have to say screw it. Screw autism. Screw this day. Do whatever you have to do to release all the negative emotions. Cry it out. Break plates. Punch a pillow. Go outside and scream at the heavens. After that…screw it. You can’t let one bad day bleed into the next. If you let that happen, your life can turn into an endless succession of bad days, and you’re very likely to miss out on some of the good things. You have to let tomorrow be a new day with a clean slate.

Confess It

Here is where I confess something to you. I frequently really suck at following my own advice. There are many days in which positive, healthy coping just doesn’t happen. There are days when I want to hide and not face the world. There are days when I insist on keeping it all inside, even when I know that it is in there growing all sorts of nasty cooties and possibly tentacles. But, I have my box full of coping tools, and more often than not and in my own time, I manage to dig through it and find the tool that I need.



Other things to entertain you on the internet…

Click me legible cuteness.

Courtesy of Whiteboard Unicorns.  Go there.  Be entertained.

Us, in clay…

Me & John

Dagney, Hank, a yellow pumpkin & a giant tadpole

Our best family portrait ever

My Dagney, she is a true artist.

Panic button…

If not for autism’s worrisome presence in my life, I’m pretty sure that I wouldn’t have one of these.  Sure, I might be occasionally stressed or worried, as a mom with two young kids, a full time job and a tight budget is wont to be.  But, I’m fairly certain that this little nuisance, my panic button, would not be my ever present companion.

Some days, I forget that it’s even there.  It’s not as if life is perfect on those days.  Life just happens, and I deal with it, good or bad.  Shit might happen, but I’m able to shrug my shoulders and move on.  Or even better, shit might not happen, and all is good.

Then there are the other days, the days when just dealing is not my forte.  The worst are the days that masquerade as the good, level, calm days, but then it hits the fan.  On those days, for whatever reason, I am vulnerable, and I don’t even realize it.  I get blindsided.  It can go something like this…

I’m standing in the checkout line at the grocery store.  The 3-year-old in the cart in front of me is chattering away.  Geez, she’s practically reciting her doctoral thesis, and mom isn’t even paying attention.  I’m seeing the future of America here, folks, lucky freaking me!  Hank is almost 5, and he doesn’t say a single recognizable word.  Will he ever tell me he loves me?  Does he even understand when I say it to him?  I get a lump in my throat, a hollow ache in my chest.  I feel something under my foot, and I look down.  I’ve stepped on a panic button…damn it.

Or…

I read a Facebook status posted by a friend with an autistic child the same age as Hank.  Wow!  He is doing really great.  I am so happy for them!  Fully potty trained!  That is fantastic!  Yeah, that…is…great.  Will Hank ever be potty trained?  Will we still be changing his diapers when he is 14?  I push away from the computer, but it’s too late.  I have already hit the big, red panic key that I swear wasn’t on my keyboard just a few minutes ago.

That’s how it often goes.  My panic button is a stealthy little bastard.  I step on it.  I sit on it.  Sometimes a dirty look will set it off.  Some days it patiently follows me around until I acknowledge it’s presence, no subterfuge necessary.  Some days it’s almost comforting.  I will sit at my desk and tap-tap-tap a rhythm on it while all the awful doubts and scary questions scroll through my head like the opening credits of a Star Wars movie.

Just a few days ago, I had a panic moment.  I’m not even sure what set me off, but I was reduced to a soggy, blubbering mess.  When I got home from work, John and Hank were out in the yard.  I watched as John gave Hank some directions.  They were the opposite of what Hank wanted to do, but he did it anyway.  Later, Hank wanted cookies that he thought were on top of the fridge.  I showed him a box mix for gluten-free cookies as a substitute, and he smiled and pushed the box to me in his way of saying, “Yes, I would like some cookies, please.  Thank you.”  He then waited patiently for the cookies to bake, although he did want to peak in the oven a couple of times.  He quit asking for the cookies on the fridge.  Later, we shared cookies.  In a moment when I wasn’t paying attention, he went to the kitchen and returned with two big handfuls of cookies.  He had a huge grin on his face because he knew he had gotten something past me.  He looked me right in the eye, and I could see the mischievous twinkle and the innate intelligence that resides there.    Then we played his new favorite game.  It involves him stealing something from right under my nose (which he is extremely good at) and then running away while laughing riotously and glancing back to see if I am giving chase, which I always am.  Much tickling ensues.

That night, I was lying in bed enveloped in a rare sense of calm.  I imagined my panic button sitting on my bedside table, placed carefully behind the alarm clock so that I wouldn’t accidentally hit it instead of the snooze button.  I thought about my evening.  It had been so lovely.  I had seen something that had not been visible to me for the last six months.  I imagine that it was there all along in some degree, but I was incapable of seeing it.

I saw progress.  Hank has made progress.  He is understanding so much more.  He is following directions.  He is looking us in the eye more often.  He is playing games with us.  He is interacting in more meaningful ways.  He is as cute and joyful as he has always been, and more so.  I saw what I needed to see that night.  And trust me, I really needed to see it.  It was like food for my soul.

So, my kid has autism.  I have a panic button.  It is what it is.  It is my beautiful life.

Vacation…

pictures now…words later…

It’s all about the mystery…

I am changing all the names on here to make this sucker anonymous.

Dagney is now the daughter.  Hank is the son.  John is the husband.  I shall remain myself since my name is in the URL.

Big prizes to whomever comes up with the origin of the names…wanton sexual favors, 5000 points toward your biggest goal in life, whatever your wee heart desires…

Life’s not all pickles and rainbows…

This little nugget of wisdomly wisdom came lilting from the backseat of my car one day.

Me:  But, Dagney, you don’t even like pickles…

Dagney:  **smiles in a way that conveys that I am somehow missing something**

Me:  Hmmm…well, I do like pickles.  And, you’re right, life’s definitely not all pickles and rainbows.

This followed a conversation we had about Hank, autism, being different.  It made me wonder if she already realizes, just a little bit, how much Hank’s autism is bound to effect her life…how much it already has.

I know that she loves her brother.  There have been times that I have wondered about her true feelings.  In my most pathetic moments, I have come right out and asked her, “You love your brother, right?”  She always answers in the affirmative.  However, it’s the unsolicited statements of love that are more convincing.  I got out of the shower one morning to find “I love Hank!” written in the steam on the mirror.  Other times, she will just blurt it out along with “I love mama!” and “I love daddy!”  She gets excited when Hank gives her a hug, which doesn’t happen very often.  It makes me sad and happy at the same time.  It’s an emotional limbo that I have become resigned to, if not comfortable in.

I know that she longs for a normal sibling.  She wants another brother or sister.  One that will play with her.  I long for that for her, but it’s just not practical.  I only ever wanted two children.  But now…if I was a bit younger…if we were more financially set…if we had a bigger house…if, if, if…I would do my best to give her that normal sibling experience.  A little while back, I thought I was pregnant.  It turned out that I was not, and I mourned that little life that blipped in and out of existence, if only in my mind.  I mourned the loss of that chance for Dagney to have normal sibling interaction.  I regretted the loss of that chance for it to not all be on her small shoulders one day.

She loves him.  Despite the fact that he raids her closet for her clothes hangers.  Despite the fact that he blows through her room like a miniature tornado.  Despite the fact that we don’t always get to go and do things that many families do with ease.  Despite the fact that she has to explain him to her friends.  Hopefully, her sibling experience will teach her so many of the good lessons in life…tolerance, understanding, hope, patience, humor, love.  I see all of these attributes blooming in her already.  Some of them more than others.  Hopefully, we can avoid the thorns and pitfalls…bitterness, jealousy, hate.

“Life’s not all pickles and rainbows.”

Maybe Hank is the pickle.  Maybe autism is the pickle.  Maybe it’s one of those sweet pickles, so that if you have to eat a pickle, it’s the best possible pickle.  Maybe I am giving her too much credit, and she was just talking nonsense to mess with me.

Maybe I will have a turkey sandwich for lunch.  With pickles.  The sweet ones.

Me and my couch…

This is my couch, or a close approximation anyway of how it looked when we purchased it.  It does not look like that anymore.  It has taken a beating.  It has been eroded by time.  I think it may have a case of Hank-induced Post Traumatic Stress Disorder.  It has become resigned to its existence, but I detect some bitterness.  Of course, that may just be from the coffee that Hank poured on it last week.

Recently, I can really identify with that couch.

The couch is rarely fully put together.  The cushions are removed and slung about, leaving its guts bare to be bounced upon by ungentle feet.  It has springs popping out, coiled and ready to snag unsuspecting victims.  It is covered with stains, some visible, others hidden and ingrained.

You see, one of Hank’s favorite activities is to dump all manner of everything onto that couch.  To date, the list of abusive substances includes water, tea, sodas, coffee, five different colors of paint, toothpaste, chicken soup, diaper cream, lotion, whatever is inside a snow globe, rice, noodles and other unmentionables.  I can clean the outside.  The cushion covers have been stripped and washed so many times that one is ripped at the seams and no longer zips.  But the inside, I’m pretty sure that it is permanently scarred.

I am that couch.

Many nights when Hank falls asleep, oftentimes on that couch, I study him.  His face in perfect repose.  The even rise and fall of his chest.  His eyelashes casting spiky shadows.  And the feelings overwhelm me.  The love, the sadness, the wonder, the determination.  It makes me heavy.  It makes me light.

John will carry Hank off to bed, and the couch and I will breath a sigh of relief.  If it’s not too late, John and I will watch some TV, frequently cuddled together on a single couch cushion because the other is getting over its most recent trauma.

The couch, plus Hank and minus the cushions, 2008.

Absenteeism…

I have been absent.  From here.  From work.  From life in general.  The only place that I have been consistently present is in my own head surrounded by a cacophony of thoughts and emotions that refuse to be filed away to be dealt with at a later date.  Apparently, the filing cabinet was already full.

Well, I am tired of cowering in a dark, dank corner of my psyche.  I’m a social person.  I usually reach out to people.  Seclusion is so not good for me.  So, why my psyche decided to run and hide and cut myself off from those that know and love me is just a mystery to conscious me.  Why haven’t I called?  Written?  Answered with something other than an automatic “I’m fine”?  I don’t know.  For some reason, at that point, my misery did not want company.

Anyway, enough of that.  I am going to be present.  And, I’m getting a little help to do that.  I am seeing a therapist.   I have never done therapy before.  I have had one session with her, and I really like her.  I think I may have lucked into the perfect therapist for me, and I am very grateful.  I didn’t want to go down the full list of in-network providers before I found someone I liked.

So, I am reentering society.  Someone buy me a white dress and throw me a debutante ball.  Or, let’s all get together for food, margaritas, dancing, laughing and much regret the morning after.  I could so deal with that.

Love…