Symbolism Lost

Friday evening, as I was getting dinner ready, the doorbell rang.  I was instantly annoyed because I thought it was another Jehovah’s  Witness, trying to foist their good news on me which, inexplicably, does not involve cash or tangible prizes.  I say tangible because, well, the promise of a vacation may be more appealing to me right now than the promise of eternal life.

Anywho.

Imagine my surprise to find Connor’s SPED teacher at the door.  She was all smiles and handed me a white paper bag for Connor (who was in the shower), and said she’d see us (tonight) at “Meet the Teacher.”

Connor and I sat at the table together and read the note:

How cool is that?

We poured the contents onto the table, and I started picking up objects and asking, “What does this mean?”

Me:  “What does the rubber band mean?”

Connor:  “Uh, to shoot at things or put around something.”

Me:  “No, remember the note, it says the rubber band symbolizes a hug.”

Connor:  “Oh.  What does symbolize mean?” That’s a hard one to explain, by the way.  Have you tried explaining that one yet?

Moving on…

Me:  “How about the tissue, remember what that one means?”

Connor:  “Yeah, it’s for when you have really gross boogers.”

Me:  “What about the button?”

Connor:  “That’s for pants.  Or a shirt.”

Me:  “And the candy kiss?”

Connor:  “That’s to eat!!  Can I have it now?”

Oh well, it was a lovely and creative thought.  But the symbolism was lost on my super literal thinker.  I wish all teachers put that kind of effort into welcoming our anxious kids back to school.  It was a great way to ease the tension.

It was a great lesson for me, too.  I will be sending Connor to the door the next time the JW’s come around.  He will not rest until he extracts some actual good news out of them, and not just far-off stories.

Facetime, Bringing Families Together

It turns out there’s one week and one day between the end of summer camp and the beginning of school.  That one day being next Monday, because the school district inexplicably decided that Tuesday would be the optimum day to begin classes.

Since I use my vacation time for doctor’s appointments and days off over the holidays, Hubs decided to take this week-and-a-day off from work.  But then he got to thinking that it would be a great time to take a 3-day road trip to Houston, where they could visit the beach and the aquarium.

And I thought, YES, that is a FABULOUS idea!!  Because, of course, the thought of 3 days of pure quiet is like a dream come true, since I haven’t had pure quiet in more than 7 years.  Sure, I would be a little sad to miss it, but it’s great father-son bonding time.

And so on Sunday, off they went on their trip.  And off I went back to bed, where I stayed all day, reading and watching TV in blissful, wonderful QUIET.

Hubs took the iPad with him, so Connor could play games and watch videos during the drive.  And since it has Facetime installed, they could call me on my iPhone at night.  The app is awesome since it gives a visual along with the auditory of speaking to someone.

That evening, I got my phone call from the boys.

Hey Mama, I can SEE you!! We went and rode a roller coaster and a ferris wheel!!

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Can you see me waving??? I’m waving!!!!

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Blalalalalala!!!!!!!!! Omb thticking awt mah tonga!!!!!!

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MAMAAAAAA!!!!! Can you see me NOW?! Look, I’m SIDEWAYS! Do you see me? Do you?

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And then all of a sudden Hubs was tired and they had to go.  Something about “STOP LICKING THE iPAD!!”  I don’t know.  But I cozied back up in bed and went back to watching the Real Housewives of New Jersey and eating ice cream.

I’m going to owe Hubs big time when he gets back.  Big time.  But all the quiet time I’ve had?  It will be worth every last blow job.

Yeah, I said that.

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Mistakes I Have Made

When Connor turned one, I remember beginning the transition from bottle to sippy cup, just like the parenting books recommended.  However, Connor had no interest in these new cups, and we spent hours, MONTHS, working on this transition.  He would angrily throw the sippy cup to the floor and yell “baaah, want bah!”  And I would pick up the cup and try again, over and over.  And the transition to solid food was much the same, a long, drawn-out process.

I worried a lot.  I was sure that I was doing something wrong, that I was lacking in the natural mothering instinct that most women have.  I worried about milestones and timelines, and feared that others would judge when we didn’t meet them.  I didn’t want my son to be judged.  I wanted to protect him, to shield him from others forming opinions about what he was, or wasn’t, doing.

So I pushed.  We kept working on the things we were supposed to be working on, according to the books.  But it didn’t seem to matter how much I pushed, Connor would get to the next step when he was darn good and ready, and not one single moment before that.

As this last week of summer camp has drawn to a close, I’ve been reflecting on what a great summer this has been, especially when compared to previous summer camp experiences.  There are different reasons for that:  Connor is older and a tad more mature; the medication regimen is different from last year, and includes a seizure med that helps with impulsivity; and the environment was a good fit for Connor.

During past summer breaks, we’ve enrolled Connor at the Y’s summer program, believing that it was important for him to be with “typical” peers.  We thought the more exposure he had with NT children, the more he would learn appropriate social interaction.  When he struggled through the summer, our frustration grew, and we continually tried to get staff to provide better, more individual support for him.

Last year, he attended the same adaptive camp he’s in this year, but he had a difficult time, and staff could not provide adequate support to meet his needs.  We finally had to move him to an even more “adaptive” camp, where he received more individual support and guidance.

So this year feels a little like hitting that next milestone, returning to the prior camp.  But much like getting him to transition to the sippy cup, per the typical timeline, things fell into place when HE was ready.  Not when WE wanted them to happen.

And therein lies the lesson.  Acceptance doesn’t just mean that you accept the diagnosis, it also means meeting your child where they are, instead of pushing them to jump ahead and meet you where you want them to be.  That means letting go of fear; fear that your child won’t be accepted, that they won’t be at the same place as their peers, that they won’t become independent.

Connor will learn all the things that he is capable of learning, WHEN he is capable of learning them.  It doesn’t really matter whether it happens on a timeline out of some parenting book, because the most important thing is Connor’s internal timeline, and his readiness.

That means that my job is to give him the support he needs at this moment in time, and not pushing him to fit into situations he’s not ready for.  It’s okay to make the sippy cup available, but it’s not okay to force it on him.

These are the mistakes I’ve made.

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Trapped in a Dressing Room With the Tasmanian Devil

The dog days of summer are slowly coming to an end, and the pale rider of school is approaching.  And with it comes the ritual of back-to-school shopping.

Up to this point, I’ve always gone out on my own and bought all of Connor’s clothes.  Once I get them home, he tries them on to see if they fit, and then I trudge back to the store to return or exchange the things that he didn’t like or didn’t fit well.  Sure, it’s a colossal pain in the ass, but not more so than trying to get a child with severe ADHD to wander through clothing stores and spend countless angst-ridden minutes in dressing rooms.

But this year, THIS year, I decided was the year of trying new things!

After all, he is 7 years-old now, and going into the second grade.  This shall be the year we attempt clothes shopping together!!  And although we have two months before it’s cool enough for long pants, I decided to take advantage of some of the sales and take Connor clothes shopping this past weekend.

We survived.  Barely.

I grabbed a couple pairs of jeans and told Connor, who was busy wandering through clothing racks, to come with me.

Connor:  “Where are we going?”

Me:  “To try on clothes.”

Connor:  “I’m too embarrassed to try on clothes around these people.”

Me:  “No, no.  They have dressing rooms where you try on the clothes.”

As we went into the dressing room area, Connor stopped to admire the large mirror.

“Ohhhhhh, three mirrors altogether!!!”

Inside the dressing room, I handed him the first pair of jeans.  He looked over and asked, “what’s that thing?”

Me:  “It’s a shelf.”

Connor:  “For what?”

Me:  “For stuff.  Like my purse.  It’s a shelf for my purse.”

Good god, it’s like the boy was raised by wolves.

BOING!!

Connor:  “What’s this?”

Me: “It’s a seat, so you can sit when you try on pants.”

B O I N G!

Connor:  “Oh, I don’t need a seat to try on pants.”

B O I N G!!!

Me:  “I don’t care whether you NEED the seat or not, it’s still not a trampoline, so stop jumping off it!”

Connor:  “What could happen?”

Me:  “You could get hurt or I could lose my mind and start screaming like a lunatic!”

BOING!!

Connor:  “Oh, sorry, I was already about to jump when you said not to.”

Me:  “Just try on the damn pants!”

World’s worst trampoline.

Usually I always get the loose-fitting jeans, but this time I must have grabbed one pair of “slim fit”, because that’s what he tried on.  They were snug, but not too tight.  Still, I usually choose comfort over style since he’s such an active child.

Me:  “Those are a little snug, let’s try on the loose-fit jeans.”

Connor:  “I like these jeans, I want to buy them.”

Me:  “They’re not as loose as the others, can you bend over?”

He immediately started contorting in various yoga-type poses, thus proving his ability to move in the pants.

They fit fine, watch me jump around!

Connor:  “Pleeeeeease, I really want these pants.”

Me:  “Why do you like these pants so much?”

Connor:  “Because they’re really cool, and they have a belt, and everyone will think I look sooooo good in them.  And they’ll want to marry me.”

I had no idea that these slim-fitting pants held so much sway over girls.  None.  Or maybe it was the belt because, after all, this was our first foray into belt land.  Prior to this point, I could never have trusted Connor with a belt, knowing full well it would be removed and used as some sort of jump rope or weapon as soon as my car pulled out of the school parking lot.  I’m still not convinced that won’t happen, but we will at least give it a try.

Me:  “Are you sure you’ll be comfortable in these jeans?”

Connor:  “Oh YES!  Can I wear them home?”

Me:  “No, I have to pay for them and it’s way too hot.  Also, I don’t want you meeting any future marriage partners here in Kohl’s.”

Somehow we made it out of that dressing room alive, twenty minutes later.  That might not sound so bad, but that’s twenty minutes for TWO PAIRS OF PANTS!

Any further school clothes shopping will be done by me.  Solo.  Yeah, I know what I said, but I’m not going again with Connor this year.  Once was enough.  We’re baby-stepping our way to maturity…in slim-fit, belted, mating ritual marriage jeans, apparently.

How you like me now, with my new belt???

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The Cult of the Autism Mom

Cult – an instance of great veneration of a person, ideal, or thing, especially as manifested by a body of admirers.

One wouldn’t think to look at the social group comprised under the heading of “autism” as a likely place for cults, but if you peel back the layers and examine it closely, that is exactly what you will find.

When my family became part of this group, I did what every other autism parent does, which is to spend vast amounts of time on the internet researching, looking, and praying for interventions to help my son.  Wading through the information is a huge undertaking considering that a Google search for “autism interventions” will yield you 2,070,000 results.

Finding the intervention that works best for your family requires a commitment to trying and discarding different approaches until something feels like a fit for your family, and especially, your child.  This means exploring different therapy approaches, such as Floortime, ABA, and Play Therapy.  It may also mean exploring specific dietary regimens, such as GFCF.  For some, a biomedical approach works best.

What you don’t realize on this journey is that you will meet other parents, and most of them will have strong opinions about the “best” approach for a child with autism.  If you explore biomed, you will encounter these moms who call themselves “Warrior Moms”, and they worship at the altar of Jenny McCarthy.  Yes, the same woman who posed in Playboy.  This group is determined to find a cure or “recovery” from autism for their child.  That’s all well and good, and certainly it’s their choice to pursue treatment that works for their child, as long as it’s not harmful.  But it’s not enough that they have their own course of action, if others don’t follow that same course, they will categorize you as being the “victim” mom, who enjoys the attention that our children’s autism brings us.  Because, you know, it’s non-stop admiration from other people, right?

In fact, battle lines are drawn all over the autism map.  The adherents to ABA therapy will find a very vocal group in opposition to the ABA method.  Those whose child attends public school may be derided by the worshippers of homeschooling.  Autistic adults take autism parents to task for all the wrongs they’ve ever endured, and the participants on each side stay right where they are, feet firmly planted, refusing to meet somewhere in the middle.

Some create a cult following by penning blog post after blog post condemning someone else, or some corporate entity, for some egregious wrong they believe has been committed to the autistic community.  They do this by honing in on a benign statement, such as “preparing my child for the world”, and then they take those words and, through the magic of creative writing, transform that caring parent into someone that doesn’t believe in the capabilities of their child, and doesn’t provide them the security and love of just being a child.

Between all the talking heads, standing on their soap boxes, is the rest of us.  The parents that go quietly through their daily lives, doing everything possible for their child, and feeling battered and beat down.  We are the masses that don’t believe in magic elixir cure-alls, nor do we believe that by not allowing our child to be aggressive we are not accepting their autism.

On the contrary, those that continue to teach their children how to interact with, and take part in, the world around them are not refusing to accept them for being autistic, but are instead TREATING THEM AS EQUAL TO NON-AUTISTIC CHILDREN by teaching them the very same things we teach typically-developing children.

But what is a parent to do when faced with such a hostile landscape?  All we can do is tread lightly, with our head held high, and refuse to drink the Kool Aid.  When someone believes so strongly in their approach or method that they have to make others wrong or put others down to present it, then it loses its appeal very quickly.

I, for one, am weary of the autism war, waged by the varying cult factions.  Where we should find a community united in promoting acceptance and understanding, we find a group divided, distracted with petty bickering over approaches and semantics.  Where the motto should be “do what works best for you and your family, as long as it’s not harmful”, we find “do it this way because THIS is the best approach.”

The good news is that the extremists and cult leaders are relatively few, and the families in the middle, just living their lives, are many.  We will be the ones that make the difference in our children’s lives, and in the world of autism, because we don’t take an extremist approach, but instead we seek a collaborative approach.  We welcome others instead of alienating them.  We share information instead of forcing it on others.  We love and parent our autistic children just as we do our non-autistic children.  And we find ways for our children to be part of the community not by throwing the word “autism” in people’s faces, but by introducing them to our child first, and not their diagnosis.

What Would Your Bumper Sticker Say?

The white SUV in front of me pulled into the rec center where I was driving Connor to camp, and we both pulled into adjacent parking spaces.

I sat for a moment, watching the woman get our of her car and walk inside the building…short, white-haired, a little thick in the middle.  I watched and thought of all the things I already knew about this stranger, because of the bumper sticker on her car.

Without even knowing her name, I knew she was strong, perhaps stronger than many women.  She either had a wonderful support system, a deep, abiding faith, or maybe both in equal measure.  She is fearless and determined, despite a nagging ache in her heart.  On she goes, one foot in front of the other, and for the life of me, I didn’t think I’d be able to do the same if I were her.

The bumper sticker said, “I’m MADD because my daughter was killed by a drunk driver.”

I don’t know if it was 6 months or 6 years ago.  But I know that she had a daughter she loved very much, who was taken from her too soon.

Everyone has a story.

That bumper sticker made me realize that everyone is dealing with something.    We plod along on our respective treadmills, often not realizing the burdens that others carry.

If everyone had a bumper sticker to tell their story, what would it look like?

My mother is dying of cancer.

My son is a drug addict and has been missing for a month.

I just lost my job and I have three children.

My wife is fighting cancer.  Again.

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Those are stories from just a few people I know.

How differently would we all behave if each person’s sorrows and pain was emblazoned on a bumper sticker?  Would we be more patient?  Would we try to be kinder to others?  Would we take the time to reach out more?

Would we learn how to be happy, just being healthy and whole?

What would your bumper sticker say?

When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life.

- John Lennon

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There goes my hero
Watch him as he goes
There goes my hero
He’s ordinary

- Dave Grohl, Foo Fighters

“My Hero”