Monday, April 30, 2012

Awareness and Acceptance

Today is the last day of Autism Awareness Month.  I've heard many different takes on the form in which we should take this month.  Perhaps awareness isn't enough?  Perhaps, this should be Autism Acceptance Month?

I can tell you unequivocally that acceptance only comes on the heels of awareness, and awareness is something that our public still lacks.  Every time someone asks what my child's savant skill is or says that they've seen Rain Man, I know that awareness is woefully lacking.

Take last Thursday, for example.  Jack was at aquatic PT, which takes place in a nice sensory hell-hole of a municipal pool.  To add to the sensory nightmare, there are several toddler and preschool swimming classes that occur at the same time.  Compounded with the fact that Jack's in the midst of a behavioral/sensory/overall-no-good month, it resulted in a PT session in which Jack screamed through all but about 5 minutes of it.  He didn't want his PT to touch him (not possible in a pool).  He sobbed and sobbed and screamed through it all.

And everyone kept staring at him.  At one point, his PT made a comment to me about how he was having a really rough day.  Then everyone started staring at me.

I wanted to crawl under the bench.

I mean, it's obvious that he's there for therapy.  He's got weights and all sorts of flotation paraphernalia about him, but there's no big label on his back that says, "I'm just here for the PT!"

Instead, what people see is a disruptive, screaming kid.

It's on those days that I wish I had the courage to step up on that bench and scream, "He's not misbehaving!  He has autism!"

And that's why we need awareness.  Because each and every one of us special needs mamas doesn't look at a tantruming child the same way today as we once did, but there are plenty of people out there who have not - and God willing will not - have that same first-hand epiphany.  Instead, we have to share with them that insight and encourage people to not judge, because you never know what is going on with another child.  Another family.  Another mom.

Only once we can make people aware of what autism looks like - what it really looks like - can we hope to move towards acceptance.  People cannot accept that of which they are unaware.

So, I think that the name placed on this month is rather arbitrary.  What matters is the meaning.  What matters is how we mobilize to spread the word.  What matters is that we encourage each other to share our stories.  We encourage our neighbors, our friends, and our families to keep asking questions so that we can keep giving them the correct answers and not just what they perceive autism to be.

We must also keep the dialogue going, not just in April but every month, so that we can continue to bring attention to the needs of a population that now includes more than 1% of our nation's children.

What I really want to see come from Autism Awareness Month is awareness not just for adults, but for the next generation.  I want Jack's peers to grow up thinking that autism doesn't keep someone from being your friend.  From being a good friend.  I'd love to see kids Jack's age treating autism as the common condition that it is and extending hands of friendship and understanding to their peers who might be differently-abled.

That's my dream for whatever-you'd-like-to-call-what-we're-doing-to-continue-the-dialogue-about-Autism Month.

Really, it should be year-round.  We don't need to put out our blue light bulbs every night (Lord knows that my crazy HOA-obsessed neighbor won't appreciate that), but we need to metaphorically put the light bulbs out.  We should share with each other, support each other despite our differences in opinions and the abilities of our children, and continue to educate others.  Year-round.

Because it doesn't stop in April.

It doesn't stop here.

Sunday, April 29, 2012

Some Days You Break

I want to interrupt your weekend for a very rare Sunday post.  I've had a piece picked up by another online community!  Today I'm hanging out over at the Sensory Processing Disorder Blogger Network, where they are featuring a spin-off of my recent post, "The Stone Face", which you can read the original by going here.  So, pull up a chair and join me over there as we talk about the days when it gets to be far too much for us to handle.

You can find today's post, "Some Days You Break", by going --> here <--.

And I would be so grateful if you would go leave a comment on my post on the SPD Blogger Network.  Please let them know what you think of me and my work so that I can perhaps get more pieces picked up by them!

Much love everyone, and I thank you.

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You can be sure to hear about my adventures at the SPD Blogger Network by liking them on Facebook here, or by liking Reinventing Mommy on Facebook here.

Friday, April 27, 2012

Today I'm Featured On...

Rare dual post today!  My piece from earlier this week, Running in the Rain, is being featured over at The Oxygen Mask Project today!  If you haven't checked them out, I highly recommend it.  It's a wonderful project that reminds all of us mamas to put the oxygen mask on ourselves.  After all, you can't take care of the kiddos without taking care of the mama!

So, please go over to the Oxygen Mask Project and leave a comment on my post over there!  Let them know what you think of my work and join them on Facebook!  It's a wonderful site full of wonderful reminders to take care of us!

Much love, my friends, and thank you for your support!

Why I Hate GNC

I'll just say this, some days I could do with a little less customer service.

The first 7 days of each month bring an errand of which I simply cannot stand - going to GNC to get Jack more liquid melatonin.  Alas, melatonin is liquid gold in our house.  We cannot survive without it, thus GNC and I engage in the below mentioned perilous exchange.

Now, before I get much further, I can hear what you are saying right now - Well, why go?  Haven't you ever heard of ordering online and having it shipped?

I'd say that yes, I have, but here is one thing you must understand about me...I'm cheap.  Like, really, really cheap.  Cheap as in when I order Chinese food I actually drive to go pick it up because then I don't have to tip the driver.

The only things I can't cheapen out on are chocolate syrup and mayonnaise.  Even I have standards.

Having an item shipped involves one thing that a trip to the store doesn't, and that's shipping charges.  In order to get free shipping through GNC, I would have to order about 8 bottles of melatonin.  I'm not sure that it's shelf life is that long.

I always go during the first 7 days of the month because I get an extra discount with our platinum vitamin discount card (thanks to my mother-in-law...I'm too cheap to buy a membership to the discount program, but that's because it's more expensive to buy the discount program than to pay the extra dollar per month on melatonin).

Now, you'd think that all GNCs would carry the same products, but no, no they don't.  I've found that only one health food store in our area carries liquid melatonin - the one in the mall.

The mall.  Our nemesis.  The place that we avoid at all costs.  Think sensory hell for Jack.  So, I always wait until the weekend to go load up on the sleep-inducing elixir, which may be the worst time for me personally to go.  Well, no one likes to be at the mall when it is occupied to the brim with talking, squealing, "does this make me look fat?" asking, way too hyper teenage girls.  I go in with one objective - get in and get out.  Don't talk to anyone and try to not get too pissed off.

I never seem to meet that objective, either.

I go into GNC and locate the bottle of melatonin.  For some reason, it's always the only one on the shelf, as if they want to coax you into buying it.  Buy me now, lest I be gone tomorrow!  I snatch it and head for the cashier.

Now, at this point, I'm scheming in my mind as to how to avoid the exchange that's about to occur, because GNC cashiers are always far too chatty.  It's like the cashiers at our local neighborhood Trader Joe's...they always want to talk to you about your purchases, when in reality you just want to pay and go.  Unless you are a personal friend or acquaintance of mine, I do not wish to shoot the breeze with you.  I'd rather get done and go.

"So, getting some melatonin?  Are you having trouble sleeping?"

"No, it's not for me."  Mistake one - I've given her an opportunity for more questioning.

"Oh, for whom?"

"My 3-year old."

A look of alarm floods her face.  "You're giving melatonin to a 3-year old?  I'm not sure that's safe..."

Sure it is.  You'd need elephant tranquilizers to take my kid down.  "Actually, it's fine.  His pediatrician suggested it since he has autism and has trouble sleeping..."  Oh crap.  I've dropped the "A-bomb".  I never mean to, but educating someone always gets the best of me. I brace myself for any number of things to come.

"Oh, you poor thing!  You must be under so much stress!"  Lady, you have no idea.  "What are you taking for you?"

"Wait...what am I taking for me?"

"Yes, you!  To help with your stress?"

Now, if I were to be completely honest, I'd tell her that for my stress I take a generous glass of Riesling with some trash TV and a side of venting on my blog.  However, I seem to get the notion that this is not the answer she is looking for, so I reply in probably the worst way I could, "Just a multi-vitamin."

"Just a multi-vitamin?!?  Well, you'll need some B-12, and perhaps some ginseng, let me just pull some things for you..."  Wait!?!  This has gotten way out of hand.  I want to buy a $6 bottle of melatonin and get the hell out of here!

"No, that's not necessary!  I'll just take the melatonin for today."

She gives me a look that seems to say, I'm sorry that your body will slowly degrade into delirium without this sublingual B-12.  Reluctantly, she rings me up, takes my discount card, and calls me by my mother-in-law's first name (it's on the card) before sending me on my merry way.

What's even more fun is when I'm stuck behind a couple of people in line.  Then I have to listen to similar conversations for each of the previous customers.

Now, appealing to my stress level won't get me to try something on myself at GNC.  Stress no longer scares me...I eat stress for breakfast.  They need only figure out that I have low self-esteem and a horrible body image in order to lure me in.

Thursday, April 26, 2012

Yes, He Is Sick

It's about 5 PM on Sunday afternoon.  Jack is, quite unexpectedly and blissfully, taking a nap.  Brian is outside mowing the yard in the final hours of weekend daylight.  I am laying back on the couch reading Catching Fire, which sounds far too much like it's prequel, The Hunger Games, and I'm wondering where the hell the author is going with this.

I look up and see that the time is indeed approaching the 5:00 hour.  Jack has slept a long time.  Lately, he naps during the week, as his mornings are filled with preschool and therapy, but weekends provide a respite from the activity and, in Jack's mind, a respite from napping, which results in no downtime for this mama.

This morning, however, has been an exception.  April is the month of a million birthdays in the Reinventing house, and this Sunday morning we celebrated two of them - mine (a week and a half late) and my sister's (a week early).  The morning was filled with family, fried chicken, and birthday cards with snarky commentary.

Good times.  Not for Jack, though.

He never does well with the activity that celebrations bring.  My family is, dare I say, a bit loud, which does not work well at all for a child with sensory issues.  So, Jack spends the celebrations at the periphery, playing his iPad and trying to remain apart from everything overwhelming.

Thus, his sleepiness was not all that surprising.  Nevertheless, I needed to get him up, or bad things would happen later in the evening.  As I entered Jack's room, to my surprise, he was awake.  He was silent, laying in his crib, but awake.  I smiled and gave my usual "Hi, sweet pea."  No response.  I unzipped him from his sleep-sack and laid it gently over the rail of the crib.  Still nothing.  As I lifted him up, he let out the smallest fuss, but was still basically silent.

Then I heard it.  It was the sound that I've become all too accustomed to over the past 3 years.  A gurgle, caught in the throat, signaling one thing and one thing only.

He's gonna throw up.

I search the room for an appropriate place to aim him.  The changing table seems like the best option.  I rush over right as the wave overcomes him.

Unfortunately, I forget to turn him away from me.  I'm a casualty of whatever has overcome my baby.  It keeps coming up.  I hear the door close downstairs and I yell out for Brian to come help.  Now.

When he finally makes it upstairs, it looks like Mt. Jack has erupted on his changing table.  I lay Jack down on the floor to change his diaper and clothes, when I notice that he seems hot...like very hot.  Like, more-than-just-throwing-up hot.

I tell Brian to hand me the thermometer out of Jack's dresser.  Yes, my old friend and yours, the rectal thermometer, is going to make an appearance.  Luckily, the thermometer works very quickly, because just seconds later I hear the beep.  The number on the thermometer is higher than I even imagined it might be - 103.7.

As I read it aloud, Brian tells me that I can't be right.  Check it again.  So, I do, and the result is 103.9.  My baby's running a fever, and a decent one at that.

We take him downstairs.  He's listless, just sitting in our laps eerily still and silent, but awake.  For anyone who knows Jack, you know how rare it is that a) he voluntarily sits in our laps unless he's having a meltdown and needs to be rocked, and b) that he is perfectly still - no stimming, no nothing.

His temperature has me worried, so I call the doctor.  The doctor-on-call tells me that we need to get his fever down, but since he's vomiting she would recommend a suppository.

EWW!!!

So, off I go, driving around trying to find a drugstore with a 24-hour pharmacy, because after all, it's 6:30 PM on a Sunday evening and no pharmacies are open past 6.  Finally, I end up driving down towards the local hospital, which has the only 24-hour pharmacy in our area.  I purchase the medicine and head home to do a job that I do not wish upon anyone.

I'll save you the gory details, but let's just say that I'll be having nightmares about that for years.

Even then, my boy is still listless.  I'll say that the doctor was right, he threw up again before the night was over, yet his medicine stayed in his system, so to speak.

The hardest part of the experience was the look on his face.  Jack was awake, but clearly hadn't the energy to do anything.  He couldn't move.  He couldn't look at me.  He wouldn't speak.  He was just laying there.  As much as I'd give anything to just cuddle my boy for an hour in normal circumstances, I do not wish that my child be so sick as to allow me to do it.

I couldn't bear the thought of putting him to bed that night, but I knew I must.  He won't sleep in our bed, so the best chance for him to rest was to get him into his own crib.  Luckily, he was still so lethargic that he didn't protest.

I emailed his OT and preschool teacher and informed them both of Jack's condition and that he would not be at school or therapy the next day.  My baby needed a day of rest, and I could only hope that he was better in the morning.

Luckily, his fever broke overnight.  The next day, he was a bit lethargic, but back to his usual self.  He didn't want to eat much, but that was okay.  There was no vomiting, so I was willing to take less food for that.

When our babies get sick, it can make us mamas feel so powerless.  To watch your child and have nothing to do but pray that the medicine brings relief, well, it seems to be the antithesis of what moms do.  We fight for our kids; we don't stand idly by and watch.  It just doesn't work with who we are.

I'm glad it was a quick bout with illness, even though it was extremely scary indeed.  Here's hoping it's the last one we have for a while, but with Jack now in school, I seriously doubt it.

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Wednesday, April 25, 2012

Is He Sick?

All kids know that no good can come of this.
We're going into week 4 of Jack being a hot mess.  He has beyond irritable, sensitive, and downright difficult to be around at times.  Some days, while he is at therapy, I find myself needing to put in my headphones just so that I can get through it.

It's been getting worse, too.  I think that the big change of starting school is the culprit, but the whole experience leaves me with a bit of anxiety over the natural ebb and flow of school.  Is this what we will deal with at the beginning and end of every summer?

Out of all of Jack's therapists, there is one, we'll call her ST #1 (not indicative of her abilities or what we think of her compared to the other, but she was simply Jack's first speech therapist) with whom Jack has had a bond since the beginning.  Usually, he's smiley, happy, and seems eager to go back to the gym with her for his sessions.

Until a couple of weeks ago.  The first week he was fussy, but last week he had turned into a banshee.

At the end of the "banshee" session, he comes walking out with ST #1, who says to me the words that no special needs mama ever wants to hear:

"I think Jack might be getting sick."

If you were a mind-reader, you certainly would have heard an utter stream of obscenities as I cursed the heavens and earth for bringing illness on my baby, who cannot tell me when he feels pain and who really doesn't have time to get sick.

Damn you school and your germs!!!

Then, as ST #1 began to explain to me why she believed Jack was sick, I felt better.  In the end, he didn't sound sick to me.  She mentioned that her concerns revolved around his irritability and the fact that he kept flicking his ear and cocking his head in a strange way.  He also did not want her anywhere near his ears.

As I processed it all, I was relieved to hear what is, basically, a description of Jack on a normal day.  Lord knows, I'd have loved for his irritability to stem from an illness, because illness I can do something about.  However, I really didn't think he was sick.

Jack normally doesn't like anyone touching his ears.  The one time that he had an ear infection recently it did produce enough pain for him to feel it and yelp.  Simply shying away from touch isn't really a new thing for Jack.

The same goes for ear flicking and head cocking.  Sure, it's not one of his normal stereotyped movements (pacing and hand-flapping are his go-to stimmy movements), but it also wasn't out of the scope of his reality.

So, I took Jack home and, much to his protest, took his temperature the only way I really can - rectally. I tell you, no parent likes taking a rectal temperature.  There's just something about it that seems...so wrong.  That and I swear that I'm going to mess up and injure my kid in the process.

Normal.  Thank God.

I'm left with a non-feverish kid who is royally pissed off at me for shoving a thermometer up his rear end.

I watched him for the rest of the day - hell, the rest of the week - and saw no signs of illness other than the increased irritability and disregulation, which has been a staple in our house for a month.

This left me where it normally does - pondering whether or not my child was indeed sick.  I think many special needs parents can sympathize with this.  A child with communication and sensory challenges may not show the typical signs of illness that you might expect.  If Jack's throat hurts, he can't tell me that.  He can't tell me if his head or tummy hurts.  We question if he even feels these sensations, because he doesn't seem to be aware of pain, unless it's extreme, or other internal sensations, like hunger or needing to use the restroom.  I'm left with temperature or a runny nose being the only indicators that illness is upon us.

It leaves me wondering if my kid that seems to dodge illness really does dodge it, or if he "suffers" in silence.

Special needs parents, what signs do you look for when you're trying to determine if your child is sick?

Tuesday, April 24, 2012

Running in the Rain

I've made some changes over the past couple of weeks.  I'm spending more time on my writing, trying to make some things happen.

I've also gotten my hair cut, a move that the majority of my family may or may not approve of once they see it.  It actually aged me a bit, which is good, because I'm a lot older than I look.  And yes, I'm typing that with a smile.  I know I'll appreciate my "baby face" when I'm in my 60s.

It had been a while since my hair was this short, since the days at my 9 to 5.  Once Jack was born and throwing up all over me on a daily basis, I figured that no hair cut could hide the vomit stains on my clothes and the sour milk smell that hung heavy in the air around my person.

Ironically enough, I think that Jack is really confused by it.  For example, take this exchange from when I picked him up at school yesterday:

Me:  "Hi, Jack!"
Jack:  No response, no eye contact.
Me:  Trying to prompt him - "Jack says, 'Hi, Mmmm...'"
Jack: "Hi, Ms. (his private OT's name)!"
Me:  "Nope, I'm not Ms. (OT).  Try again.  Jack says, 'Hi, Mmmm....'"
Jack:  "Hi, Ms. (his preschool teacher's name)!"
Me:  "No, I'm not Ms. (preschool teacher).  Jack says, 'Hi, Mommy!'"

To which Jack looked at me for the first time in this whole exchange, with a look that said, To hell you say!  You're not MY Mommy!


Yeah, that wasn't my intent by making changes.

Ultimately, I've decided that I needed to do some things for me - to make me happy.  I need to discover who I am and what I like and want out of my life.

As a means of getting to that goal, I've started running again.  I used to run when I was younger.  Really, my neighborhood is the perfect place to run.  It is very hilly around where I live, but my neighborhood sits on a rare oasis of perfectly flat ground.  The main street actually loops around the neighborhood, serving almost as a track, if you wish.

I had not gone running since before I got pregnant with Jack, which was in 2008.  Once Jack was born, he always had so many needs that it seemed like running was more of a hassle.  I thought about getting a treadmill, but they're just so damned expensive.

That and I far prefer to run outdoors.  I like the feeling of the wind on my face.  I like the fresh air and the smells of the grass, the various blooms of the season, and the smell of rain as it is coming in.

Much to my neighbors' confusion, the time you will always see me running is in the rain.  I adore running in the rain.  As long as there is no thunder and lightning, I don't let a little thing like precipitation get in my way.  I love feeling the rain roll down my skin.  I love the slight chill as the wind lashes against my wet skin.  I love the solitude, the peace, of the rain.  It is so cleansing, as though the rain just washes away all of your cares, your concerns, and your fears.

I can do some of my best thinking in the rain.  I basically write out a piece in my head while running.  It gives me a chance to really examine myself.  What do I like?  What do I want?  These are questions I've never really asked myself, but I feel like I should after all of these years of being so concerned by the answers others would give.  Now, I actually am starting to care about what I have to say.

I'm probably happier now than I have been in years...and yes, that's with an autistic child.  He has a long way to go, but he's made great progress and I feel like we've got the right combination of therapies with the right therapists and we will continue to see progress as he continues to work with them in the years to come.  I feel confidence in that.  I have proven to myself multiple times that I - and I alone - can fight for Jack and make things happen for him.  That has been so empowering.  I am doing some things just for myself that make me feel good.

You may look at Jack and some of the issues I deal with on a daily basis and feel either sympathy or sadness, but don't. I'm at a point where autism is just a "normal" part of my life and, even though some days are harder than others, for the most part I just deal with things as they come and make the accommodations I need for him.  Sure, it sucks at times when I see what he can't do (evaluation time comes to mind), but then I remember how far he's come.

And I helped get him there.

It's the same with running in the rain.  You might look at me out of your window and think, That poor woman!  She's soaked!  She must be miserable!  However, if you looked at my face, you'd see a smile as I think about how far I've come.

Monday, April 23, 2012

Loving/Hating Autism

Before I begin today's post, I just want to give a huge thank you to each and every one of you who has encouraged me, read my stories, learned a thing or two, or simply said, "Yes!  That's me!  That's us!"  The support I got from my first piece on Hopeful Parents was simply unbelievable.  I look forward to being featured there again in the future.


And to the new readers, welcome!  I hope you'll find some peace and comfort here amongst friends.  We're a casual group, so kick your feet up and make yourselves at home.

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I stumbled upon an interesting debate recently about whether or not autism was something to be loved or hated.

Loving and hating autism.  That, in and of itself, sounds problematic to me.

Before I get too far, I should say that the following is my opinion.  Mine and mine alone.  The opinion you might have is your own.  Both are okay.  Everyone - and I mean everyone - is entitled to their own opinions.  Everyone can feel however they feel about this.  There are no right or wrong answers...every answer is okay.  It is okay for you to be in whatever place you are right now, and it is okay for you to change your mind, too.  Do what feels right for you.

First of all, autism is not something that can be separated from my son.  I do not think that autism can be cured.  I just don't.  The way I see it, Jack has a genetic neurological difference that has made his brain develop differently.  To completely rid him of his autism would necessitate a new brain, which, besides being impossible, would make him someone else, and I really like who Jack is.  He is my little boy and I love him for who he is.

There are some things that I find endearing and amazing in him even though they are considered autistic traits.  I love the way that Jack shows the world he is happy with every inch of his body.  He flaps, he smiles, and he paces as though he simply cannot contain his joy any longer.  Who else expresses overflowing joy in such a way?  Some people might say "That's the point", but I say that it is magical.

Jack also has an incredible memory.  He can hear a TV show just once and memorize every word said.  Sure, he scripts, but those scripts are uncanny in their accuracy, right down to the inflection and sound effects.  Now, I have a really good memory, but his far exceeds mine.  Imagine the potential of someone who can log away information like in a library?  Scripting isn't something we encourage in our house by any means, but I can imagine very functional uses for such an amazing memory.

Jack also dives into fixations with more passion than I can comprehend.  He does the things he loves to the fullest.  The energy he puts into his letters is astounding.  Sure, it keeps him away from the social world, but I can also imagine him finding a place in this world in which he does what he loves with all of his heart.  He will pursue his passions full force and let nothing stand in his way.  What is not to be celebrated about that?

I've said it before, and I may be biased, but he's here to change the world.  He's changed mine.

That being said, I do not love autism, either.  My boy struggles to feed himself.  His little body gets battered by the everyday things, like light, sound, and texture, and it brings him to his knees.  He has to be taught every single thing.  He hits himself and scratches at his skin.  He struggles to communicate.  These things frustrate him.  His anger overflows and he lashes out, sometimes violently, as evidenced by the scratch on my eyelid and cheek.  He cannot tell me if he's sick or hurt or scared; he just screams.

There is a reason for why these things occur for my baby, and it's called autism.

This past week, my boy's screams brought me to my knees and, in that moment, I hated autism.  I said it; I hated autism.  I didn't hate it for me.  I don't feel robbed of a "normal" motherhood, regardless of whether or not you think I am.  What I hate autism for is what it does to my angel.  I hate it for the pain it causes him.  The frustration.  The discomfort.  The lack of independence and control.

It's those days that I'd love to have a big punching bag that says "autism", just so that I can beat the shit out of it.  Friends of mine, I'd gladly let you each take a few cracks at my punching bag, too.  Baseball bats, chairs, anything goes.  That would be for us, ladies and gentlemen.

And yes, I realize that I just used a not-so-pretty word, but let's face it, sometimes 4-letter words are the only ones that truly convey our actual meaning.

Thus, perhaps I should clarify.  I don't "hate" autism.  I hate what autism does at times to my little boy.

Here is where I find a departure from what some people say about "hating" autism.  There is a contingent of people who believe that to say that you "hate" autism is equivalent to saying that you hate your child.  That's the furthest thing from the truth.  I love my son.  I love him more than anything - anything - on heaven or earth.  What I hate is the disabling aspects of autism.  I don't hate them for me, because life isn't going to always be easy for me and I get that, but I hate them for him.  I don't believe that makes me a bad parent; I believe that makes me just a mom.  After all, what parent would not take their children's struggles away if they could?

I don't hate my child.  I don't even always "hate" autism.  I wouldn't say I "love" it, though, that's for damned sure, and there are days when I do hate it.  The days when I break because I feel my baby's pain so acutely are the days that I hate autism.

I don't even hate autism for what it does to me and my family.  For the stress.  For the financial burden. For the constant worry.  The everyday problems would exist with or without autism, but just in a different flavor.

I will remain proud of my son.  I can take pride in his accomplishments.  I can appreciate that autism makes those accomplishments all the more sweet.  It is the reason why I screamed from the mountain tops last weekend when Jack used a fork independently for the first time at home.  It wasn't pretty and his grip was horrid, but he did it, and it was a beautiful thing to see.

Autism has also brought wonderful, talented, incredible people into my life.  I have found a sense of purpose and belonging here that I never felt before.  I've said it before, but there is one love in this community.  Autism has also made me a fighter, something that I never would have said a year ago.  I have my days in which I am weak, but I am happier with myself right now than I have ever been in my life.  I have a confidence that I never had before.  Autism, indirectly, is a part of that.

Is it what I would have chosen for my life when I was a newly pregnant mom-to-be 4 years ago?  Absolutely not.  However, we're here, this is home, and I am going to make it spectacular.

And that's where I am right now.  I understand that many autistic self-advocates feel differently, but I have a different perspective - that of a mom.  I know that some parents even feel differently.  I see that I can separate my son, his triumphs and his struggles into two separate components that can exist in the same wonderful person.

That is my opinion, and I do not feel a need to apologize for it.  Conversely, we all have our own opinions and places in which we feel comfortable, and I respect that.  What I don't respect is the bickering and accusations that occur within our community whenever topics are debated.

Remember, we're all in this for the same thing - our children.

For the people who might say, "What about the day, 20 years from now, what if Jack reads this blog and sees how much this pained you?  How will he feel about himself?"  Well, my reply would be that I would hope that if he could process it, which would be Mt. Everest-quality progress, that he would also see that his mother fought for him with every ounce of energy she had.  That I loved him so fiercely that his tears were often shed by me as well.  That I thought him to be incredible and worthy of acceptance, admiration, and respect.  That I knew that he would change the world.

And he will change the world in spite of his challenges, maybe even because of his challenges.  I hope that he does embrace his uniqueness and, yes, even his autism one day and see himself to be a brilliant self-advocate.  If I can teach my son to fight for himself as I did, then I will have succeeded and be the first to beam with pride at his side.

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Feel free to add your thoughts and emotions on this topic, but I'd like to remind everyone to please be respectful of the opinions of others if you do.  Remember, one love my friends.

Friday, April 20, 2012

The Big News

Well, you know how I said that I had exciting news?

Okay, in reality, how many of you thought I was going to say that I was pregnant?  Sorry to disappoint you, but there is no Reinventing baby on the way.  It's something that, to me, is equally exciting!  It's the beginning of the realization of a dream.

I'm now a monthly contributor over at Hopeful Parents, a community where parents of special needs children can connect...and today my first post is being featured!  So, please take the time to go over to Hopeful Parents, read about the upcoming one-year anniversary of Jack's autism diagnosis in "One Year Later...", which you can find --> here <--, and leave a comment so that they'll know that people like to read the stuff that I write.

I am beyond excited about this.  I guess I can officially call myself a "Freelance Writer" now.  There are big things coming, people, big things.

I am so eternally grateful to each one of you for the comments, encouragement, and stories you share with me of your journeys.  This blog has been such a source of comfort for me in some very dark times, and I will continue to make this my permanent home.

Much love my friends...and I thank you.

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I'll be hanging out over at Hopeful Parents on the 20th of each month.  So like them on Facebook and look out for more posts from me both here and on Hopeful Parents!


While you're at it, like Reinventing Mommy on Facebook to get the latest updates from my blog and beyond!

Thursday, April 19, 2012

Mostly (Kind-Of) Neurotypical: Part Four

Today marks the final installment in this series, Mostly (Kind-Of) Neurotypical.  To understand what is going on here, please read Part One of the series --> here <--, Part Two: Socially Awkward --> here <-- and Part Three: Walking on Broken Glass --> here <--.

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Part Four:  Different Ways of Learning

When I was 5, I was a...well...sickly child.  For years - years people - I had been plagued with ear infections that would rage on to the point of causing my eardrum to rupture.  I actually used to have anxiety as a kindergartner about waking up in a pool of blood on my pillow, because it actually happened quite often.  It was always at night, and it always resulted in yet another trip to the emergency room.  I have very clear memories of my evenings in the ER at the local children's hospital.

They finally decided that I should have tubes placed in my ears during my kindergarten year.  These days, the procedure is really common and performed at a very early age, but tube placement was a relatively new surgery at that time.  I remember that surgery very clearly, which was also combined with an adenoidectomy.  I remember trying to talk the anesthesiologist out of giving me an IV and I remember them bringing my stuffed dog Jacques (like from Lady and the Tramp - he was a Scottish Terrier) back with me and placing a mask on him so that he could "go to sleep".

That same year, I also suffered from the Chicken Pox (again, the diseases that we "endured" while our kids will not), Fifth Disease (look it up), and for a touch of the 1800s, Scarlet Fever (yes, I came down with a disease that raged during the time of the Civil War).  The experience left my body weakened and gave me some interesting pox scars - which I imagine that everyone over a certain age has.

After my year of epic immune system fail, it was determined that I should go see an audiologist.  The result, which was also reconfirmed later in my life, was that I had some minor hearing damage and some auditory processing problems.  Now, I'm certain that the hearing damage resulted from the repeated assault on my eardrums, but the auditory processing was always blamed on the ear problems.  Really, I'll never know for sure, but the one thing I know is that I did - and still do - have difficulty discerning sounds.

Sure, I can "hear" what's going on, but I cannot filter out the extraneous sounds.  As I type this post, I am watching The Big Bang Theory, but the fan is also on in my bedroom.  I can also hear a mild squeak of the ceiling fan.  I can hear the clicking of my keyboard and Mason's slow snores.  Even though the TV is sufficiently loud enough for me to hear the speaking, I cannot discern out what they are saying.  When I was a kid, the audiologist told me to just ask my classmates what the teacher was saying.  This was back in the days before 504 plans and classroom accommodations, so it was assumed that the teachers would allow it because they would be understanding.

Enter the worst 1st grade teacher in the history of public education.  We'll just call her Ms. T.  Ms. T was older and acted as if she was counting down the days until she could retire.  She is the teacher who punished me for toe-walking.  She is also the teacher who gave me Cs in handwriting (there were no Ds at my school, so a C was next to an F - though in her defense I always got poor marks in handwriting).  She also saw that there would be no need for me to speak in class regardless of my inability to understand what she was saying.  There was no talking in class and that was that.  Violations of the above rule would result in swift punishment, and this was in the days in which corporal punishment was practiced; our principal proudly displayed his paddle in his office.

The result was that I went to school with zero expectation of actually learning anything.  Instead, I went to school, filled out my worksheets, and went home to pour myself into my books and learn what I needed to learn.

Luckily for me, I guess, I learned how to read when I was 2 years old.  I say "I guess" because it eventually seemed like a bit of a side-show act - Look at Jeanie...the amazing reading toddler! - but when I was in elementary school I was already reading many, many years ahead of grade level.  Where most kids weren't expected to "read to learn" until the 4th grade, I was reading to learn in the 1st grade.

Also, luckily, Ms. T slipped one rainy morning walking into school and broke her hip.  I got to school to see the ambulance driving off with her.  I feel so horrid now for thinking this, but to my little 1st grade heart it was by far the best day of the school year.

Now, not to brag, but I am a reading Jedi.  I can polish off books like TV shows.  I can easily read 400 pages in a day (it takes me about 2-3 hours uninterrupted, so it doesn't happen often), so I got by.  The same with college, except that professors have a nice habit of testing based on lectures and not textbooks.  Thank God for the little tape recorder that saved my ass through many a biochemistry lecture.  Only when I could go back and listen to the tape in the quiet of my apartment could I understand the lecture.  The best professors for me were the ones that used PowerPoint and would make me a copy of their PowerPoint presentations.

Perhaps, the thing that produces more of a side-show factor with me is my ability to do math in my head.  I'm not talking about basic arithmetic; I'm referring to upper level algebra and calculus.  For some reason, I can close my eyes and see the numbers.  Literally.  I can see the way the graph would look for an equation.  The position of all of the numbers shows me each curve in the graph.  It got me in trouble, though.  So often in school we were asked to "show our work".  I always got knocked points for that, but I usually could fake it enough to get something in the ballpark of the work on paper.  Well, I wasn't cheating, but I just didn't need to work it out on paper.  Now, for some reason, I need to work statistics out on paper, but most algebraic equations I can do in my head.

So, what is the point of this diatribe on my learning style?  Well, I guess I can say that public education doesn't exactly cater to my learning style, either.  I would have excelled in a quiet room with a pile of books, but instead I only excelled academically because I spent hours at night studying the material that I would not learn in class.

This is why I like the IEP and 504 systems, because they try - note I said try - to address the learning differences in our children.  As much as some people might complain about the number of accommodations made in schools these days, the fact of the matter is that not everyone - myself included - learns the same way.  Some of us need fidgets; I needed to wiggle my foot or flip my pen.  Some need sensory breaks; Jack certainly does.  Others need material presented in different ways, not unlike the way I needed to read the material rather than listen to it.

And that's okay.  It's okay to learn differently.  In fact, we should support that!  I'm so grateful that Jack is growing up in a time where sensory breaks aren't that unusual.  He needs a sensory break every 1 - 2 minutes at school, but that's what he needs to be able to attend to task for the 1 - 2 minutes that he is not on a sensory break.  In the end, it isn't how we learn it but if we learn it that's important.

How do you learn differently?  In retrospect, what might have made your educational experience better?

So concludes this series about being mostly (kind-of) neurotypical.  I hope that my own admissions of my quirks, idiosyncrasies, and frustrations give you cause to examine yourselves and take note of the ways in which you are wonderfully unique.  Perhaps, that quirk of yours might give you pause the next time you see a boy like mine flapping his hands or screaming in a situation in which you don't understand.  Perhaps, you will look back at your own qualities and see that everyone struggles with something, and for those of us who struggle more than others, perhaps you will see that you are not alone.

Wednesday, April 18, 2012

Mostly (Kind-Of) Neurotypical: Part Three

Today marks Part Three in this series, Mostly (Kind-Of) Neurotypical.  To understand what is going on here, please read Part One of the series --> here <-- and Part Two: Socially Awkward --> here <--.

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Part Three:  Walking on Broken Glass

"Do you have restless leg syndrome?"  This was a common refrain I heard as a child.  It was hard to not notice the way I would fidget.

My foot then, and now, would wiggle back and forth if I wasn't on my feet.  If I were standing, it was my hands that would move.  I was not a hand-flapper by any means, but my hands were in constant motion.  I did policy debate in high school and for a brief period in college and I came to be known as someone who would shake a timer in my hand while I spoke.  Either that, or I would fidget with a pen.  It was the only way I could focus.  I just could not keep still, despite the commands to do so.

Even now, my foot is wiggling as I sit to type this.  If my feet aren't moving, I'll either rub or lightly tap my thumb against my index or middle finger.  As strange as it sounds, my brain just does not work if I'm not moving.  Right now, I've stopped wiggling my foot to illustrate the point.  My skin feels so strange when I stop fidgeting.  It's hard to describe, kind of a cross between tingling and pain.  Almost like slight muscle spasms, but not that.  It is uncomfortable and drives me to keep moving.  Ironically enough, I have never been able to sleep without being wrapped up like a burrito, even in the warmest weather.

I get Jack's food hang-ups, too.  I'm not as picky of an eater as he, simply because I was made to eat foods whether they made me want to gag or not, but that may be because I can select my own foods now.  I have real problems with foods that have mixed textures.  Things like soup, ice cream or yogurt with chunks in them really get to me.  There are certain foods that, in my mind, seem to need to be smooth.  Give me a cup of yogurt with fruit on the bottom and you will see me turn green.  Gummy textures get me, too.  Things like gummy candies, Twizzlers and licorice, raisins, and other chewy foods really get me.  Luckily, I don't throw up like Jack will, except when I was pregnant with Jack.  My vomiting was the stuff of legend for months.

Don't ask me to touch those textures, either.  I won't like it.

When I was a child, I exclusively walked on my toes.  I did this until I was 6.  It did not feel right to walk flat-footed.  It was more comfortable - more natural - for me to walk on my toes.  However, it wasn't the way the world worked, so everyone discouraged it.  One very cruel teacher broke me of it by imposing punishment every time she caught me walking on my toes.  The irony of it all is that I cannot walk in heels now, when I could walk on my toes all day long then.

Doctors told my parents that they should just enroll me in ballet, because toe-walking would make me a natural!  Well, the pediatrician clearly had not seen me move, because I am the world's klutziest person.  Seriously.  I have, over the course of my life, broken every toe and my right wrist.  I have also sprained my right ankle, which never healed right and flares up occasionally.  I cannot walk without tripping.  My arms seem the hardest to control.  I drop things constantly.  It is not a matter of me losing focus, it is like my hands inexplicably release objects.  As a kid, I remember getting yelled at several times for breaking dishes or glasses, simply because I would drop them.  I was told to be careful.  It wasn't that I wasn't careful, it was that I just could not hold onto anything.

The lack of coordination and klutziness is the most frustrating.  At least I can fidget, but I don't know how to make my hands hold onto objects.  I don't know how to make my arms do what I want.  A good example - my previous employer used liquid nitrogen freezers for storage.  I did some validations and calibration of the freezers, and I knew full well that touching the freezer walls would freeze my skin solid to them, not unlike the way a tongue sticks to a flag pole on a cold day (thanks A Christmas Story!).  Every time, I would keep my arms as close to the middle of the freezer as I could, but when I turn to walk away, my arm would suddenly stick to the wall!  It was as if I lost awareness of where my arm was.  I have several battle scars on my arms from freezers, because the natural reaction when your arm freezes to something is to pull it away quickly.  Well, the top layer of your skin remains when you do that.  Trust me.

I stay banged up because of it.  I also keep a ready collection of swear words close at hand for these very occasions.  Sometimes, the best word is a 4-letter word.

I think that the hardest thing for me has been being touched.  I absolutely cannot stand to be touched.  I hate that, because other people seem to enjoy affection and I want to enjoy it, too.  Being a woman, many women greet each other with hugs, but hugs always feel so forced to me.  I hold my hands at my side and go to my "happy place" until it's all over.  I've also been reported to get a deer-in-the-headlights look when hugged.  Sometimes, I actually have to back away from hugs.  There is one notable memory in which Jack's special instructor tried to hug me before the holidays, in which I squealed, "I really don't like hugs!"  She looked at me with a shocked, and hurt, look, and I had to apologize.  After all, it's not that I don't like or love people, it's just that I can't do hugs.

Affection is the hardest.  I feel like I disappoint my family by not being affectionate.  I know that significant others in the past never liked how unaffectionate I was.  It was just that it never felt right.  Hugs felt like a million tiny needles all tingling my skin, but not in a good way.  It is almost like ants crawling over my skin.  Very uncomfortable.  I always felt like I was missing out on something.

I now know that these things are sensory, not because I've been diagnosed with anything, but because I identify with Jack's sensory issues.  At this point, there's probably little anyone could do, anyway.

And yes, I'm aware that makes me just like Jack.  However, the only person I've ever been able to be affectionate towards is Jack, but maybe that's because he never wants to be affectionate back.  It's always on my terms.

And yes, I know it makes me incredibly quirky.  Unlike Jack, I don't break down into a crying, screaming mess.  Having a lack of control over my body, and knowing that my body doesn't respond to things the way that other people describe they do, firms my resolve to be a "sensory warrior" for Jack.  His issues are far more severe than mine, but I want him to have ways to cope that I never learned.  I want him to feel more in control of his body than I do.  When Dr. DP first mentioned the importance of sensory integration to me when Jack was diagnosed, a light bulb went off and I knew that this was something we had to tackle aggressively.

If you think about it, if your sensory system is out of control, if you can't make your body do what you want (motor planning/coordination), then you cannot function.  Regulation is the foundation for everything else.  My various issues make me quite a different learner growing up (see tomorrow's post for why).

I think there is definitely truth to the fact that we are all very neurologically diverse.  I think that only in understanding that not everyone processes the world around them in the same way can we truly accept people of all abilities.  I grew up in a time when people did not accept different ways of learning and doing things.  As a child, I never mentioned that things made me feel uncomfortable, because I was always given the impression that the way I felt was wrong.  Not different, not that there might be a neurological reason behind it, but that it was wrong...like it was something I could control.  I'm glad for Jack that we are seeing that mindset change.

Confession time - what are your sensory issues?  What do you to find relief?

Stay tuned tomorrow for the 4th, and final, installment of this series - Different Ways of Learning.

Tuesday, April 17, 2012

Mostly (Kind-Of) Neurotypical: Part Two

Today marks Part Two in this series, Mostly (Kind-Of) Neurotypical.  To understand what is going on here, please read Part One of the series --> here <--.

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Part Two:  Socially Awkward

I remember the first time it occurred to me that I had no idea what to do in a social context.  I was in the 3rd Grade.  We went on a Girl Scout camping trip.  My mother was the troop leader.  Many of the girls in our grade were a part of our troop.  We had been together since the 1st Grade.  Most of us came from the same area of town, as the school we had gone to only serviced a small area of town, before it was closed at the end of my 2nd Grade year and we were merged with another school.  Think 3 classes per grade.

Practically unheard of these days, right?  My school was also nearly 100 years old.

It was the classic scenario, there are a certain number of tents and a certain number of girls...and we can't all sleep in the same one.  There was also one girl who, in retrospect, I can identify as a 3rd Grade version of Rachel McAdams's character from Mean Girls.  She was a bitch (yes, I just called an 8-year old a bitch), but I wanted to be just like her.  She had the respect of everyone.  Even I got that.

She claimed a tent and banished me, along with 3 other girls, to another tent.  Theirs was the place to be, because everyone was there but me.  I walked over and called into the tent.  Little Ms. Thing of Tent 3 came to the opening and stared at me.  I said something that, at the time, seemed so innocuous, but was also something I'd heard on TV...like on Nick at Nite.  Yes, I was scripting TV from 20 years prior.

Mistake one.

I said "Peace."

Mistake two.

Little Ms. Thing of Tent 3 burst out laughing and said something that, almost 25 years later, I haven't forgotten...

"What a loser!"

With that, she closed the flaps of the "cool" tent.  I knew something had gone wrong.  I walked away very hurt, so hurt in fact that I never have forgotten this exchange, even decades later.  Of course, I can look back and say to myself that I know exactly what went wrong.  Never script off of Bewitched or The Mary Tyler Moore Show when you can script off of The Facts of Life.

Unfortunately, the rest of my school career ran much like this.  The 3rd and 4th Grades weren't as bad, but 5th Grade was the worst (sorry Moms of 5th Grade girls...I feel for you).  Suddenly, I was getting excluded from the "in-crowd".  I still got birthday party invites, because my parents bought the best gifts (note to self: buy awesome, expensive gifts...it will equal invitations for Jack).  Everyone got a personalized pencil box from me that year - something that was rediculously in-style (along with slap-bracelets and Trolls).

The 6th Grade, however, was the year it hit a breaking point.  I was in honors classes, which segregated me from the other kids for a few classes a day.  It was also the year that one of my biggest obsessions - dinosaurs - began.  For some reason, it wasn't seen as cool that I was an 11-year old girl that could tell you the difference between an Ovoraptor and Gallimimus.  Yeah, go figure.

It was also the year that my parents got divorced.  Things were not good at home, and as with so many things, I held it all in.  School - a place where I had always excelled - should have been my sanctuary.

As a nod toward cruelty, we had assigned seating at lunch.  I was placed smack in the middle of a group of the popular kids, and they tortured me.  No matter what I said, they laughed and called me names.  Horrible names that I won't repeat.  Words that people don't use anymore.  So, I did what I could...in the style of Jack, I just shut down and stopped speaking.

From the 7th - 8th Grades, I was in all honors classes, which provided me a bit of relief.  However, they made us have homeroom with everyone else.  The bullying continued there.  I remember that I could not figure out why I could never say anything right.  One day, I revealed that I had a little crush on someone in my class.  One of the girls who sat nearby chimed in, "Why would (that person) ever like someone like you?"

In high school, my family moved around a lot...as in every year.  Those years provided relief in two ways - one, no one expects the new girl to be overly social, and two, being the new girl carries a bit of intrigue.  I never stayed in one place long enough for anyone to get to know me, so it actually worked out a bit in my favor.  We would always move on before anyone got to know me.

What was so hard about those years was that I wanted to be liked.  I wanted friends.  For the life of me, I could not make it happen.  I had a handful of friends that I could really count on one hand.  They were mainly friends who had known me my whole life - like since preschool.  Others came and went.  For some reason, many treated me as a social pariah.  The ones who didn't...well...I'll be forever grateful.

I speak out against bullying so often for this very reason.  Many kids get bullied for reasons completely beyond their control.  Some kids, like me, want so desperately to fit in, but simply cannot understand how to do so.  I just didn't get kid-speak.  I made friends with the teachers rather than my peers.  I took a couple of college classes geared for gifted kids when I was 11.  I fit within the adult world, but I was perilously trapped within adolescence.

Even as an adult, I really struggle to read people.  I tend to gravitate and speak most easily to the people who just tell it to me straight.  Sarcasm, non-verbal language, and the other games adults play tend to just confuse me.  I just cannot read a person's emotional state unless they are very clearly displaying it for all to see, through big smiles and big frowns.  The subtleties get me.

Eye contact was something that alluded me for a long time.  My whole childhood was filled with people telling me to "Look [them] in the eye."  When I was about 20, I remember a lightbulb going off one day and I thought, people actually expect me to look at them when they are talking to me!  Ah ha!  I started working on strategies to help me look people in the eye and shake their hands.  I never could quite get the hand shaking thing right (I shake hands like a man) and eye contact became a compromise of looking for a brief second into someone's eyes, then averting my gaze to another location, like their lips, their hands, or hair.  Looking people in the eye is still very uncomfortable for me.

As a result, I don't get out much.  Having an autistic child certainly comes into play, but I really struggle to be social, too.  When I am at support group meetings or amongst people I trust, I can open up a bit, but I tend to never initiate interaction with another person.  I wait for people to come to me.

It helped me excel at my job, too.  After all, being alone in a clean room with nothing but a piece of equipment to keep you company is enough to drive the average person insane; however, I loved the solitude and peace of the clean rooms, with nothing but my thoughts, an electronic puzzle to solve with a particular piece of equipment, and the lull of the air handlers.  I would spend days in the clean rooms working on validations alone, but that time was my favorite.  Meetings were what I could do without.  Just let me tinker with the electronics and I'll be just fine.

I also suffered from panic disorder for many years and had crippling panic attacks.  Well, I say "suffered" in the past tense, but I still have the occasional panic attack.  It became a cycle of avoiding situations in which panic attacks would be triggered, like social settings.

There have been some other draw-backs, though.  Romantically, it's always been hard for me to connect with people.  That made dating very difficult.  It's not that I didn't love or didn't want love, but I had a hard time expressing it and I am definitely less than affectionate than the average person (see tomorrow's post for why).  I could never figure out how to keep anyone happy, regardless of how hard I tried.

It also has affected relationships with my family and friends.  I made up for that by making friends with my pets and the horses I worked with in high school.  I began to approach life as a big social experiment, trying various approaches until people responded to one of them.

As a kid, I think I could have definitely benefited from some social skills training.  I just needed a boost, if you will, in my social abilities.  I needed someone to tell me that not everyone wants to hear about the plates on a Stegosaurus.  Luckily, no one gets subjected to diatribes about dinosaurs anymore, but get me going on physics and we'll be talking (or rather, I'll be talking and you'll be dozing off) for hours.  I think it also contributes to why I like writing.  I feel like I can convey exactly what I mean through writing versus speaking to someone.

I have come to feel like there are a great many people out there with social issues.  We're definitely not alone, even though we might all feel that way.

Open discussion - do you have social issues?  If so, what tips/tricks have you found make socializing easier?  What do you wish you could address?


Stay tuned for tomorrow's installment - Walking on Broken Glass.

Monday, April 16, 2012

Mostly (Kind-Of) Neurotypical: Part One

This is a post that I've tried to write multiple times, honestly I have.  It's been a struggle between courage and cowardice, with the latter winning every time.

But not today.  And not last week.  I feel it to be one of the most liberating pieces I've ever written.  A very intimate look into who I am and what makes me tick.

So, I decided to stretch it out into a series.

This year is going to be one of self-discovery.  Of reinvention.  Of being comfortable - being happy - with me.

I have written in the past about how the acorn doesn't fall too far from the tree.  In the autism community, I've heard people use the expression, "Cats don't give birth to dogs."  Quite simply, it means that some, but not all or even most, of the parents of kids on the spectrum are, well, a little off of neurotypical themselves.  It's not a bad thing, Lord knows it's not, but it is an honest admission that many of our children's struggles are indeed our own.

I think that many of us can honestly say that we see ourselves - that we understand ourselves better - through our children.

I had never really spoken it aloud to anyone - until last week.  Really, it was spur of the moment, very brief, just kind of came up in conversation, but I trusted that this person would likely understand, so I revealed that I had sensory issues.  Not just any sensory issues, but ones that have impacted my life, my relationships, and my ability to feel comfortable in my own skin.  Ones that I wished with all my heart that I could have escaped from.  At times, I still do.

And as I spoke those words, a little lump in my throat, the one that reminds me to hold back who I am, lest the world see me, slowly released me from its grasp.

They have also resulted in what was, by many accounts, a very rough childhood for me, one of misunderstanding, bullying, and big gaps between my deficits and strengths.

I had never spoken those words aloud.  Not to anyone.  Not even to my family.  Or even my husband.  Not that it would be a surprise to them, really.  They'll read this series and say, "Of course!"  It's not that it's ever been given a name - it's just a matter of, "That's just Jeanie."

For years - years people - I felt like there was just something wrong with me.  I'm not a self-diagnoser, and I won't be even now, but for the longest time I grew up feeling like I was damaged.  That I was beyond repair.  That I was, as everyone was saying to me, just weird.  Broken.  A nerd.  A geek.  Awkward.

I spent huge amounts of energy trying to make people like me.  I just couldn't figure it all out.  You might say, "That's just a teenager thing" and I'd say that you were right.  It was different, though.  I'll show you.

Those were some dark years.  College really allowed me to come into my own.  It was a fresh start.  It was an academic arena where I could study science and math all day and, hell, it would be encouraged!  Living on my own (if you count "on my own" as being with 5 other women in a 6-bedroom - no kidding - apartment) allowed me to do things the way that I liked.  I think that adulthood really is the salvation for people like me.  Some adults, but God knows not all, have the ability to see past some of it.  You become more valued for your assets rather than your deficits.

I'm sure you can all think of famous people who, in conventional circles, might have struggled romantically and professionally, but because they found a niche and found success, they live it up.  With supermodels.  And yachts.

Being an adult, many, many (no, I won't reveal how many) years out of childhood and my teenage years, I still focused much energy on everyone else.  There was no helping me, so all I could do was beg everyone to love me, but then someone came along who convinced me that I didn't have to put up with the injustices of the world.  Someone who convinced me that I could be strong.  Someone whose existence was tied into my own.

It was Jack.

Through Jack, I am better able to understand myself and, for the first time, feel as though I am not damaged.  I can feel as though there is a reason why I am this way, and it's not that I am just "weird" or "abnormal".

So, what would be the point of this admission?  It's because it helps clear the air.  Also, I believe that standing up and being the first to say, "This is hard for me," makes it easier for others to join you at the table.  All of us, united, make a stand that some of our "quirks", our departures from the neurotypical, do not make us weird or any less worthy of love and respect.

They make us human.  Part of the wonderful human experiment of diversity.

I also want to give people the courage and light the fire to help their own children.  When I was a child, my behavior and issues weren't seen as differences in neurology - I was seen as just awkward.  However, it didn't make my struggles any less so by saying that I was just weird.  We live in a time in which children have more access to the therapies that can help - really help - them overcome this.

Have courage for your children.  Have courage so that your children don't potentially feel as I did.  You are their advocate.  Your children might not be autistic.  They probably aren't.  However, if you feel like something is not right, follow your intuition.  Don't let people - general pediatricians come to mind - dismiss your concerns.  Sometimes, nothing is wrong, but it is best to let specialists evaluate and tell you that.  After all, for every mom like me that had the nagging feeling for a year that something was wrong, there was something putting that mom off a whole year from getting that evaluation.  And for each special needs mom like me, whatever was putting them off - family, pediatricians, or friends - was wrong.

Trust your instincts.  Fight for your children.  It's not about a label; it's about helping your children reach their full potential.  Don't fear the label.

I'm not a self-diagnoser.  I'm not even the kind of person who would seek any kind of diagnosis for herself.  If there is nothing I can do about any of it, I'm not the kind of person to go look for a diagnosis just for the sake of having one.  Nor am I sure I would have been diagnosed with anything way back when.  Certainly I would not, because it was before the days of sensory issues being discussed openly and the broadening of the spectrum.

I have, particularly within the past year, discovered that the world is peppered with those of us who slightly veer off the path of neurotypical.

I want this series to be an open forum for people to share what makes them so wonderfully depart from the neurotypical.  Please share your thoughts, feelings, and insights.  You aren't alone!

This series continues tomorrow with Part Two:  Socially Awkward

Friday, April 13, 2012

The Stone Face

The screams have lasted ever since school.  He was shaking, crying, and clearly needing something...but what my sweet baby, what is it you need?

The changes...it's the damned changes.  They hit my boy from all sides.  They leave him reeling.  It's that school has started and they are still trying to figure out how to reach my boy.  It's the demands on him.  It's all of it.  It's created a speed bump - a hurdle, if you will - that feels to me like a mountain.

And I don't usually feel like that.  That day, however, I did.  I felt vulnerable and like I would break.  I felt like I had to hold it together for my boy, but when he was out of my sight, the walls came shattering down.  There was no protection; just me having to face the thing I hate to face the most - myself and my emotions.

We went to therapy and the cries continued intermittently, though the therapeutic listening made him ever so quiet.  He pulled it together, but was silent.  Once we got home, his screams continued.  Putting his diaper on was incredibly difficult.  There were kicks, screams, and a sense that my boy was out of control.  He didn't want to be held.  He didn't want me.  He wanted me to put him down - to leave him alone.  So I did.  With a kiss, I placed him in his crib and closed the door behind me.

I could still hear the sobs and the screams.  Hearing your child so tortured, so unable to find relief, cuts you to your core.

I realized that everyone I encountered probably felt my air of gloom.  Being my birthday, such a mist hangs heavy over the air around me anyways, without feeling my boy lose his grasp on regulation.  This day, I felt like I could feel how much the world bothered my boy.  How his body couldn't make sense of it all...and my mother's heart began to break.

The tears flowed freely.  Both of Jack's therapists that day got a dose of this mama's inability to control it.  For someone who always tries (note that I didn't say succeeds) to remain collected, the fact that I cried in front of not one, but two therapists was, in the end, mortifying and made me feel like I had lost control.   I couldn't be strong any longer; the storm had finally weakened my roots and I began to give way.

The woman that many have referred to as "emotionless" - me - was definitely anything but this afternoon.  No, if anything, people who talked to me or encountered me probably were thinking that I was a friggin' basket case.

No.  Just one very emotional mama feeling her baby's pain far too deeply.

I do cry.  In fact, I've probably cried more over the past year than I have in a lifetime.  You see, I never cried for myself.  It's not that I never felt pain - I have and I do - but I never could express it that way.  My parents divorced and I didn't cry.  It wasn't that I was unfeeling; to the contrary, I was devastated.  However, I couldn't express it.  My mind just didn't work that way.  All the best to keep it bottled up.

Maybe that comes from my days of being bullied in school.  Maybe not.  Maybe it's just who I am.  Don't let it affect you, Jeanie.  Don't let them see you suffer.  Put on a face of stone and show no sign of breaking.  No sign of weakness.  Keep it within.  Don't let it out, lest you become more vulnerable to the attacks.

The reminders of past birthdays were not the problem today; it was my boy and the feeling that I was powerless to help him over this hurdle.  It was one of those days in which you want to look to the heavens and scream to anyone who will listen, "Why my child?  Why any child?  Why does he need to suffer so?"


Oh, how I wish there were easy solutions.  How I wish that I could take him into a dark, quiet sensory room and live there with him, locking the door behind us, on a swing, with nothing but peanut butter and English muffins to eat!  How I wish that time could stand still.

I can't.  Life doesn't work that way.  We all have to function in this world of ours.  Oh, how I wish so many things, but his life will be better for me not allowing him to enter that dark room and close himself off to us all.  That's why we work so hard, that's why we assembled the team we have, that's why we spend hours - hours - a week in therapy, that's why I send him to school - because the world cannot be shut out.

It just can't.  Jack needs the world, whether he realizes and wants it or not.  The world also needs Jack.  He is here for a reason.  I have to believe that.  He is here to teach us - to teach me.

And I'm here to open my eyes and ears to it all.  I'm here to absorb as much as I can from the angels in Jack's life that help him and from the angels in my life who help me.  I'm here to keep fighting.  I'm here to be his support - his guide - and to ease the journey when I can.

And occasionally, that means confronting my own worst enemy - my own tears.

I know that this - this speed bump - isn't permanent.  We will have times that are harder than others.  We will slip in our journey.  In those times, it will feel like we can't get back up, but we will.  Maybe not unassisted, but we'll do it.

I can no longer rely on that stone mask to keep me safe.  It can be penetrated by my baby's pain.  Others will see.  And I must move forward without that shield.

This speed bump - this mountain - is temporary.  I can do this.  I must do this.

Thursday, April 12, 2012

The Greatest Fear

I am about to give voice to what I believe to be every special needs parents' greatest fear...your child getting hurt and you not knowing it.

Many of our kids struggle to tell us what happened to them during their day.  My Jack can't tell me about his day at all; we're still in the "more glug-glug" stage.  So, when your baby comes home hurt, you would be irresponsible not to worry.

I'm not even speaking of more sinister things happening to our children - God knows I cannot let those thoughts enter my mind right now - but the more everyday occurrences.

It's not that we don't expect our kids to get the bumps and bruises of childhood - they happen.  Hell, with my lack of coordination, they happened to me with astonishing frequency.  I suffered more bumps, bruises, and broken bones than I can count.  However, I could tell someone what had happened to me...usually.

Jack, on the other hand, cannot.  Jack is also particularly worrisome to this mama because he has a very low awareness of pain.  So, he can run into a table, fall off a slide, or get a cut on his leg and not react.  You won't necessarily know he is hurt from his cry.  You have to see it happen.  You have to be on him all the time to watch him, because you'll never know if he's hurt.  It takes a lot to make him cry from pain.

In addition, Jack has very little safety awareness.  He also is very impulsive.  He has been known to reach for knives, scissors, and other potentially dangerous items.  We keep the house locked up like Fort Knox just to keep him safely inside.

That makes school all the more anxiety-producing for this mama as well, because not only do I have to rely on others to watch over my angel and keep him safe, but I also have to rely on them to come clean and tell me when an incident has occurred.

Which is why it pains me that my child has not only had the anthill incident, but he came home with a bruise Monday afternoon...and I have no idea what happened to him.

When he is in my care, I watch over him extra closely to ensure his safety.  I've had people comment that they think I should leave him be and not hover over him, and I do try, but it is a fact that he needs more close supervision that a parent sitting 15 feet away.  If my son were to get hurt, I might not know about it until the damage had been done.

So, what do you do?  I know I can't shelter my son.  He has to be out in the world.  The reality of life is that I will not always be there to protect him.  I can give him the tools, to the best of my ability, to protect himself, but I rely on the watchful eyes and intervention of others to help keep my boy safe when I'm not at his side.

Unfortunately, I cannot speed up my child's ability to communicate any more than we are already attempting to do, so the best I can do is communicate to others his limitations and hope that they heed my warnings and protect him just as I would.

That's not always going to happen.  I know that, particularly in a school setting, he's not going to be in a 1:1 situation very often.

I know the worry won't go away.  There will always - always - be something to worry about.  I know that.  It doesn't mean that I can't wish with all of my heart that nothing will harm my angel.

We all just have to keep praying that our babies stay safe when they're not under our watchful eyes.  I'm hoping that a solution, whether it is greater awareness of his needs by school personnel or 1:1 support, will soon present itself.

Wednesday, April 11, 2012

The Birthday Blahs

This was going to be a bit of a doom and gloom post for me.  This day, every year, the stars seem to align just right, creating some kind of a horrid, rotten awful, no-good, bad day.  I try not to anticipate it, lest I bring the ill-will on to myself, but it seems as though I can't hide from calamity.

You see, today is my birthday.  Not that you'll get my age out of me or anything.  Not falling for that one.  I still look a hell of a lot younger than I really am (my genes don't all suck, apparently), according to the people who still card me any time I buy wine (with a preschooler in tow) and who think that I'm younger than my siblings and my husband (I'm not...and yes, that makes me older than Brian, if you're counting!) I'm guessing that I probably can't get away with that ruse of "It's my 20th birthday!"

For as long as I can remember, birthdays have really sucked.  Here is just a short list of some of the things that have occurred on my birthday (or close to it) to effectively ruin the day:
  • I got in a car accident one year.  Because nothing says "Happy Birthday" like a rental car and x-rays.
  • I was dumped by my boyfriend one year.  That was memorable.
  • I've had close family forget my birthday (more than once).  I've also had them forget to get me anything...including a card.
  • Last year, my son was days away from being diagnosed with autism.  So, yeah, I wasn't really in a celebratory mood.
And that's just a smidgen of the fun.  Historically, some bad events have had their start on April 11th as well:
  • On April 11, 1970, Apollo 13 launched on its fateful voyage to the moon.
  • On April 11, 1912, the Titanic sailed away from the coast of Ireland, never to see land again.
Every year, I get the same choruses of, "Let us celebrate your birthday!  Don't ruin your birthday for everyone else!"  I don't want to "ruin" it for everyone else, but I guess I thought that birthdays should be about...well...the birthday girl (or boy).  Well, this year, I really want to crawl into a dark hole and sleep until I am __ (still not getting it out of me) and 1 day old.  Is that okay?

Probably not, considering that Jack has school and 2-hours of therapy.  Wishful thinking.

I'm kind of past it all.  Really, Jack celebrates birthdays in the best way...like they are any other day.  Birthdays?  What's a birthday?  Cake?  Who needs it.

Well, I might could stand having some cake, considering that I'm a cake-a-holic.  Perhaps a nice bottle of Barefoot Reisling and a lovely meal of Chinese food, too.  No singing, though, it unnerves my boy.  No candles, either, because I don't want to spend the evening playing "Which Smoke Detector is Going Off and How Do I Shut It Up?"

I'm not going to let it be a doom and gloom birthday...and I really hope I'm not tempting fate by saying that.  No, I still don't want to "celebrate", but I am determined to make this year (hell, this decade) better than the last.

I have to keep working for my boy every day, but in the process, I need to do some things for me.  I need to give more credit to the angels placed in my path to help support me and carry me when I feel I can barely walk and cast aside those who only make me feel bad about myself.  I've gone through some really horrible things in my lifetime - some of them having absolutely nothing to do with autism - and I've survived.  I'm made it through multiple decades and I'm still standing.  I've survived some things I thought would tear me down in a way that I couldn't be rebuilt.  I've helped my son along a path of progress.  I've found strength I never knew I had.

Through my son, I have gained a greater understanding of myself.  Thank you for that, Jack.

I've encountered things that I thought would be impossible.  I remember thinking that there was no way I could get through Jack's diagnosis.  Well, I did.  I remember thinking there was no way I could do his Katie Beckett application.  Well, I had help, but I did it.  I remember thinking that there was no way I could survive the IEP process and get what my boy needed out of it.  Well, I had some good advice, but ultimately I did it.

Do you know how empowering that is?  To know that I can do these things?  I want each and every one of you to understand that if I can get this far with some of the obstacles that have been in my way at various points in my life, you can too.

As I enter this next decade, I'm committed to doing things to help my sweet Jack, but I'm also committed to myself.  I need to support my boy, but I need to support me, too.  If I don't do it, who will?

That's the point.  I've learned, after many, many years, that you cannot rely on anyone to take care of you except for you.  I've got to stand up for me.

So, Happy Birthday to me.  I'm cracking out the Reisling and toasting a new decade filled with progress for both me and, most importantly, my boy.

Tuesday, April 10, 2012

People Don't Change

So I walk up on high and I step to the edge / to see my world below / and I laugh at myself while the tears roll down / 'cause it's the world I know, it's the world I know. ~ Collective Soul, "The World I Know"

It may make me sound like Dr. House, and it pains me to say it, but I really believe it to be true - people don't change.

You may want them to, but they won't.  Lord knows, you may hope someone changes, but people are who they are.  All the wishing in the world won't change it.

I should know.  In the many years I've been a member of the human race, I've come to learn that people don't change...and yet, here I sit, year after year, hoping for change.  We make progress, we grow, but we never truly change who we are.  Yet, there are people who I wait for, year after year, to change.

Uncontrollably, we love who we love.  We trust who we trust.  We are drawn to people based not on the pain they can cause, but on the relationships they have to us.  The way they make us feel.  The way they make us smile.

Does it make me an idealist or an idiot?  If you were to ask Dr. House, he'd probably say the latter.  Well, idiot or idealist, I'll more than likely keep optimistically hoping that the human race proves me wrong.

It hasn't, yet.

That is the one thing I can say about Jack that is so incredibly refreshing.  With Jack, you get what you see.  There is no hiding.  No games.  No lies.  It's just truth and brutal, blunt honestly.  If he doesn't want me around, he just pushes me and says, "All done Mommy."  If he doesn't want to cuddle, he squirms away.  He's going to be himself, no matter how much it hurts.

That's actually kind of nice, really.  How many times to we all stop to wonder just what another person is thinking?  We stop and search their faces for some clue - some sign - of their intentions.  Whether it is at work, when we look to see if our co-worker is about to take the glory for our ideas, or in our personal lives, when we search the faces of others to see if they are interested in us, if they think we are their type of person, or if they are attracted to us.

None of that wondering with Jack.  What he cannot say in words, he more than makes up with in "all dones!" and plain old disconnecting.  Sure, he's about as much of a people person as Dr. House, but he never leaves you guessing.

Which brings me back to another Dr. House adage that autism seems to have conquered - "Everybody lies."  And they do.  I don't know a single person who doesn't lie.  Even me, who finds it so incredibly difficult to lie that I probably twitch when I do it (it's like my mind doesn't do lying, for some reason).  I lie about what people would consider "little white lies", and occasionally it gets me in trouble.  Like when I tell someone that a particular dish they made me tastes good (even though I am dry-heaving inside), and they continue to make it over and over again for me.

Jack would just throw up.  That's honesty for you.

It does seem like everybody lies.  It makes trust incredibly difficult.  Who do you trust if, A) everybody lies and, B) people don't change?  It's all a study in human nature, and I am still trying to figure out this grand social experiment.

Well, as evidenced above, you can probably trust people who have an autism diagnosis (Jack will be brutally honest about what he likes and doesn't like), or you can approach the world just a little more cautiously.

Really, I hate doing that.  I don't like feeling jaded.  I hate feeling like I have to approach the world with skepticism.  My husband is good at it, being the perpetual pessimist, but I have always hoped that the world would prove me wrong.

So far it hasn't, but one can still hope.