No, seriously, I tend to do this little eye-twitchy thing when I hear the word “autism”.

I know, I’m a horrible person for feeling this way, and may make myself unpopular with people for stating this. I don’t blame the word, or the condition, or the kids who have it. But hear me out and maybe you’ll forgive me for feeling this way.

It first started when Maura started preschool. She was placed in a special ed preschool, and my thoughts on it were “Great! I can meet more parents who are in the same boat as us, and we’ll have so much to chat about.” I mean, I already had other friends who were parents of great little beings who were deemed “normal”, obviously I would be able to make friends easily with parents who knew what life was like with a great little being who was also a bit special.

Oh, the naivety of it all.

I was stunned by how not accepted I was. See, a few had formed their own club, their “My kid has autism” club. And I was not allowed to join. They asked if Maura had autism, I said no. They said “Are you sure?” I said “Oh, we went to this doctor at the Big Deal Hospital and they told us that Maura definitely doesn’t have autism.” The one response was given to me with a smirk and “Oh, they told us that to, but they were wrong.” The “and you could be too.” was implied. They would share information with other parents of kids with autism, information I could have used as well, but wouldn’t share it with me.

I viewed us all as people who may not be in the exact same boat, but we were on the same lake and had lots in common. They saw me as “the one whose child doesn’t have autism”. They would go on about their child’s issues, and if I said “oh yeah, we go through that”, it wasn’t the same. I guess because I didn’t bitch and moan about how tough life was.

Now I know what some of you may be thinking – “Oh, you just read them wrong!” or “You must be exaggerating!”

I could buy that, if it weren’t for the fact that one of those parents looked me in the eye and said words I will never forget.

“You’re lucky. You’re child doesn’t have autism.”

Say what?

The ironic part of that statement was that at that exact point in time, if a doctor said to us “I hate to break it to you, but Maura has autism.” I would have kissed the doctor and have been thrilled. At that point, we had spent two years testing her for different syndromes and diseases. I was desperate for a label. I would have been glad to have heard she was autistic. And I thought they were the lucky ones – they knew what was causing their kid’s issues. We didn’t know and knew we may never know.

A year later, I sat in the school psychologist’s office and was told my son had mild Asperger’s. My response was a bland “Okay.” He looked at me quizzically and must have assumed I was in shock, because he then said “Well, how do you feel about it?”

I told him, “You have to understand – my daughter? We’ve spent the past few years trying to find out what she has. Anything that comes with a book and a support group, I’m okay with.” Besides, I already knew the boy was quirky. We just had a name for that quirkiness now.

Ironically, my son’s diagnosis of mild Asperger’s suddenly gained me respect in certain circles. When people would give me the “Are you sure she’s not autistic?”, I could say “Well, my son’s an Aspie.” and suddenly, I was in the know, one of them, the card carrying member of the club. Which I thought was a bit ridiculous because his Aspie-ness was no big deal. Oh, it’s given us interesting moments, like the time he corrected the priest in the middle of Confirmation, but in a big family full of quirky people, he’s kinda normal. And having watched friends whose kids have more challenging versions of autism, I know that what we go through isn’t that major or life-interrupting.

Interestingly enough, Maura has more in common with the kids with autism we know than the son who is actually on the spectrum. Maura has apraxia – a speech disorder that is common in kids with autism. She has sensory issues as well, though hers are sensory seeking, rather than sensory avoiding. She can scream in public over a minor issue just as well as her autistic counterpart, as well as has poor sense of danger. Thirty percent of children with autism can develop a seizure disorder – Maura already has one. Many autism therapies work for Maura as well, and many of the apps for her iPad were created for kids with autism.

Here’s the catch – many times, we don’t qualify for things…because to qualify, you have to have a diagnosis of autism.

Yeah, I have to admit, that brings up the old bitterness. “Oh, we train guide dogs!…for kids with autism, go away.” “We’re a special school that has lots of occupational and speech therapy!…for kids with autism, so sorry, you don’t qualify.” “We’re giving away iPad stuff!…for kids with autism, so you can’t enter.” “We’re fighting to get insurances to cover therapies!…for kids with autism. You still have to suck it up and pay for stuff.”

I get it. I have just one child with her own little Sherlock Syndrome, and there are lots and lots of kids with autism. I’m not saying those kids shouldn’t get help. I’m glad there is all that out there, because it helps dear friends of mine. I just wish that they would be more welcoming to those of us who may not have autism, or any other label actually.

Imagine having to slog through the world of Special Needs with no help or guidance or handy guide to places suited for you child, having to do all the footwork yourself, reading up on sites on the internet, asking around, wondering if you can accost the stranger in the grocery store whose child reminds you of your own in hopes they want to befriend you and be a cohort. Imagine coming across something that sounds perfect for your child only to then read “But this is only for kids with X.”

Imagine being told you’re lucky that your child doesn’t have X, when in fact, what your child has is actually more disabling than what their child has, only it’s not visible yet.

Now imagine not twitching a little when you hear X.

For me X = Autism.

And that’s where I’m coming from.

So many times in life, we notice what is different about Maura.  She likes to remind us that in many ways, she is a typical little seven-year-old girl.

Case in point – she got all excited to go to the mall today. 

We went to get her hair cut.  Last September, she got her first real not-by-mom haircut, and she thoroughly enjoyed the experience (she blew kisses at her new self in the mirror after high-fiving the stylist.)  We let her hair grow out all winter, but with summer upon us, her longer hair was getting sweaty and messy.  She does like pig tails and pony tails, but doesn’t care for the process of putting them in, then half the time pulls it out.

So we decided to go for a summer bob again.  Maura at first balked in the doorway of the salon, mainly because she wanted to head into the mall to go shopping.  But once in, she was fine.  She got her hair washed and cut, watching the stylist in the mirror, checking out what everyone else was doing.  The stylist got five stars from me as nothing Maura did phased her.  It was impressive how much hair was taken off of Maura though – probably four inches.  But Maura definitely enjoys her new, shorter hairdo.  She walked out of there with a spring in her step, bouncing her hair about on purpose. 

The only problem is  – she looks like an even bigger girl now with her new big girl haircut. 

You find  yourself reading articles on the best children’s hospitals in the U.S.

You know the ins and outs of the local medical center.

You have to buy a separate card holder for all the business cards of your doctors, plus hospital cards, insurance cards, cards with prescriptions on them, etc.

You have so many medicine syringes, you find them in odd places like your purse, your car, the driveway…

You start to have a favorite pharmacy.

You have a favorite doctor.

You forget about well-child check-ups not b/c you don’t want to go, but because you saw so many doctors that year, it just actually slipped your mind.

You’ve done the above more than once.

You are prepared to handle just about any question a person has for you about your child, to the point that you sound like you’re giving a prepared speech.

Yet there is still times when you’re completely blown away by someones question.  And not in a good way.

You watch Discovery Health Channel.  A lot.

You treat “Mystery Diagnosis” like an episode of Jeopardy and are proud when you’ve figured out what’s wrong long before the show tells  you.

You hope to be on “Mystery Diagnosis”.

You’re familiar with many different rare disorders after reading about them online.

You’ve spent any time at all at rarediseases.org

Your other children are well-versed in which doctor visits require packing Nintendo’s and books, don’t bat an eye when you have to take their sibling to the ER, and assume that every doctor appointment is for their sibling and not them. 

You don’t really think any of this is a whole lot because you know that others are going through so much more.

You’ve learned to count your blessings and enjoy life as it is – with all its surprises and unanswered questions.  Because sometimes, you don’t want that particular answer.

Today, I was at Borders bookstore.  I love Borders.  I love going there just for the calm and the books and their cafe area with the free wifi, where I can sit with an iced tea and my little pink netbook and write.  It’s one of my escape places. 

However, as great as Borders is, it lacks something I could use.  It lacks a book describing what I’m going through.  I know this because I’ve looked.  Today I was looking for a specific book, which I had seen there once before, Schuyler’s Monster, which is the story of “a father’s journey with his wordless daughter”.  (There is also a blog, if you want to follow their story further.) I wanted to buy this book partially to read the story of someone who had searched for a diagnosis and got one. But I couldn’t find the book in the store.

Oh, they had tons of parenting books.  Books on how to raise smart children, how talk to kids so they hear you, how to make your baby happy with sleep, what to expect at what time and supposedly how to handle it.  All the usual nonsense that I’m sure others less cynical than me find helpful.  They also had books for those with needs.  Sensory Needs.  Autistic Needs.  ADHD Needs.  Even a book on how to deal with Down Syndrome (yes, one whole book!).  And that there rounded out their section for special needs.

Like I said, nothing I needed.  No How to Potty Train Your Seven Year Old Without Losing Your Mind popped out at me on the shelf.  Nor did I find a handy copy of Finding the Right Doctor to Diagnose Your Child Without Going Broke or a guide on how to explain your unlabeled child to a world that loves labels and idolizes doctors. 

What would be extremely handy right now is a book on how to talk to school administrators without looking like a demanding ass of a parent.  I think the closest thing to that is a book on how to mix drinks.  Okay, that wouldn’t help with talking to school admins, but it would sure help afterwards!

Anyhoo – after perusing the parenting section today, I turned to leave, only to be confronted with a whole shelf full of baby journals.  My First Year type things.  Though since having my first, they’ve upped the ante by having pregnancy journals, journals for your son or daughter, grandmother journals.  Lots of journals.  Plus the old-fashioned baby books, like what I have for my older three.  Those things you start to fill out, vowing to be good about noting every tooth and first sneeze, only to peter out on it at month six, then frantically fill out at their first birthday the best you can by memory because you don’t want to appear to be a slacker mom.

Did you notice I said “older three”? 

Technically, Maura has a baby book as well.  It’s a pretty, girly baby book.  It’s also a pretty irrelevant to Maura’s timeline baby book.  It expected her to do certain things by certain  months.  My poor little Maura just couldn’t keep up with it.  It sat unfilled for years on a bookshelf, slightly mocking me, always reminding me of what Maura wasn’t doing.  What she couldn’t do by a year and maybe still wasn’t doing by age two.  One day, I discovered Maura sitting with the baby book, bending pages all out of whack as she scribbled on them.  I thought “Oh, what the hell, it’s her book.” 

Oddly enough, we still have the dang book, and she still flips through it.  The only writing in it is hers.  But I decided long ago that I will just make Maura her own special book, one to accommodate her milestone timeline.  She should reap some benefit to having a mom who claims to be a writer who is also crafty and creative.