“My Butt is getting SO big!”

Laugh: to express mirth, pleasure, derision, or nervousness with an audible, vocal expulsion of air from the lungs that can range from a loud burst of sound to a series of quiet chuckles and is usually accompanied by characteristic facial and bodily movements.

…and other hilarious stuff my three year-old says.

It’s these kinds of surprising and honest comments that keep me going, that keep me sane.  When I’m feeling overwhelmed with the sheer magnitude of being a mother, it’s these simple moments that remind me why I chose to a parent in the first place.

I’m sure we all have a laundry list of adorable things our children have said, but how often do we take the time to really tally them up and enjoy them?  A lot of my posts are, and will continue to be, about the struggles of raising a child diagnosed with ASD, but I cannot allow myself to merely unleash the struggle.  I need to embrace the moments of pure joy parenting brings as well.

So, for today’s post, here are a couple of moments highlighting my “laundry list of laughter,” if you will.

Laugh #1: “Mommy, you’re a princess!”  
Big C’s comment when he saw me in a dress for the first time (I’m a slacks kind of gal).  After that comment, it’s a wonder I don’t wear dresses every day.

Laugh #2: “Mommy, you are my son.”
Imagine this said with a completely serious and sincere tone.  I often tell Big C he’s my son and that I love him. Obviously, “son” has a unique connotation for him.

Laugh #3: “You wanna piece of meat?”
One day when wrestling with our son, my husband asked him, “Do you want a piece of me?”  Big C heard something a little different, and it’s stuck ever since.

Laugh #4: “Ask.”
Big C often repeats things verbatim.  In the world of ASD, this is called echolalia (one of the many terms I’ve learned).  So, for example, when I tell Big C to ask his father for a popsicle, he walks up to his daddy and says, “Ask.”  It’s adorable, I tell you!

Laugh #5: “There’s a snake in my boot!”
Big C will often randomly quote lines directly from movies and tv shows and insert them awkwardly into “conversations.”  It leaves most he interacts with perplexed, but makes me smile understandingly.  It’s like our own private joke (speaking of  which, that’s a Toy Story reference).

Laugh #6: “T-rex have teeth big as ‘nanas!”
No surprise that Big C likes to fixate on things.  One of his biggest fixations are dinosaurs.  He watched an episode of Dino Dan (sneaking suspicion he may also be on the spectrum) and they mentioned that Tyrannosaurus Rexes have teeth as big as bananas.  This little fact has fastened itself to Big C’s brain ever since, and it is a fact he is thrilled to share with anyone who will listen.

Laugh #7: “I’m the little boss!”
In a fit of frustration one night, my husband said to Big C, “You need to listen to me.  I’m the boss!”  to which Big C responded, “Well, I’m the little boss!”  Well played little dude, well played.

Laugh #8: “Patience, Mama.  Do you understand?”
This past Christmas morning, I was perplexed that Big C was not ripping his presents open.  Instead, he was placing them into a pile and simply staring at them, seemingly savoring the moment.  When I asked him why he wasn’t opening any, that was his response above. I do understand, Big C, I really do.

Laugh #9: “Oh, man!”
Big C picked this up from Swiper on Dora the Explorer and says it at pretty hilarious times like after throwing up on the kitchen table.  Little dude’s got comedic timing down.

And finally, Laugh #10: “My Butt is getting SO big!”
Big C loves to talk about how big he’s growing and then cite each individual body part’s amazing growth.  You get the idea.

What are some of the hilarious comments your child makes?  I’d love to have you add to the laundry list.


Lost in a Lingo-laden Land


The number of terms I’ve come across since the diagnosis of autism spectrum disorder was placed on my child.

And the list keeps growing.

Just days before we got Big C’s diagnosis of ASD, I’ll never forget what I said to a dear friend of mine with three NT kids (look at me showing off already):

“I just wish I knew some other parents with an aggressive child like mine.  No offense to you, but you just don’t get it.   I feel like I have no one to talk to.”

Oh, the irony.

And yet…

I still feel quite a bit alone.  You see, my son is tiptoeing along that line of  autism or “something else” that no one can quite put their fingers on.  Big C isn’t a simple case (who is really?).  He qualified for autism on some tests and not on others.  In fact, when his IEP was developed, the team that created it made it very clear that they bounced back and forth between the label of EDD or ASD and, in the end, went along with the medical diagnosis of ASD merely because the accommodations recommended were the same regardless.  They also emphasized a strong need to re-evaluate him in three years to see if the label would even stick.  It’s entirely possible it will be replaced with a new label or no label at all.

I’m not complaining.  This is great news!  To me, the label is really just a means to an end.  Whatever the professionals wanna call Big C, I’m okay with, as long as it gets him the services he needs.  It just makes it harder to find a community to call “home.”  My son doesn’t have severe autism, so I cannot truly relate to those families; my son is not a “typical” kid so I cannot relate to the bulk of my friends.  So where is my community?  Where does my family fit in?

What all of this labeling creates is an ever-shifting line dividing “neurotypical” and “atypical.”  Big C refuses to cross the line.  He dances, runs, jumps, and leaps along that line which I love about him.  He is uniquely himself, defying conventions, but it can be a very lonely line to walk upon because, inevitably, society tries to force us to choose a side, or else risk being an outsider.

That’s sort of how I feel right now: lost in a land of acronyms.  For now, I think I’ll continue to dance along that blurry line with my little guy.  He’s got some nice moves.

Oh, and make some flash cards.

That’s a lot of acronyms.

This post also appears on the blog, Sammiches and Psych Meds.


Early Intervention is Key…but wait six months.

Patience = something I don’t have.  I really wish I did.  It’d make life a hell of a lot easier.

My impatience leads me to a natural disinclination for doctor’s offices.  I loathe going to the doctor.  Inevitably, you spend more time waiting to see doctors than actually seeing them.  It’s annoying.  I don’t like it.  ‘Nuff said.

I think perhaps this disdain led me to the overzealous idea of combining both my three year-old and four month-old’s check-ups into a joint appointment last August.

Not my finest hour.

Big C did what I would have done, were it socially acceptable.  He screamed and ran in circles around the room, hitting the walls, and writhing on the floor.  I feel you, Big C.

After some attempt at discussion with me, his pediatrician recommended he see a child behaviorist.  She went on to say it might take six months to get in.

I thought she was joking.

Nope.  She recommended a few books and more or less said, “Good luck,” and we were on our ‘merry’ way.

The doc was true to her word.  Six months later (after some persistent calling on my part), we finally had an appointment to see this “amazing” doctor (not impressed).

My husband and I weren’t honestly sure what to expect.  I, for one, was excited to hear what this behaviorist had to say.  Finally, I thought.  Someone was going to give me some real strategies to help my kid!

What we got was a claim that he might be “mildly autistic” (more on that in a later blog) and that we’d have to come back in a few weeks to confirm.  She compared Big C to a news broadcaster.  He had a lot to say, but much of it was unintelligible, random, and directed at nobody (was this a knock at news anchors?).

It took a few days for the potential diagnosis to really sink in.  When it did, I cried (a lot), and felt guilty, embarrassed, confused, angry, scared: if you’ve been down this road, you know exactly what I’m talking about.  Once it did sink in though, I was ready for action.  I didn’t want to sit around anymore.  I already felt like I’d lost six months; I wanted to get rolling.

Then the road blocks began popping up.  When we got the official diagnosis of ASD, along with a gamut of recommended therapies, resources, and books to read, we discovered our insurance didn’t recognize this pediatrician’s diagnosis.  She hadn’t done a full evaluation.  We had to make more phone calls.  Once again, answers of six-eight month waits was the norm just to get an evaluation.  This didn’t include the additional months of waiting to get the therapies started afterwards.  A genetics test was suggested.  Wait time – eight months.

I was dumbfounded.  I was being told my son had ASD and it was possible I may have to wait nearly a year to start certain therapies?

This was simply unacceptable, so my husband and I did some more digging.  We found a place, a full evaluation center recognized and approved by insurance with only a three-week wait.  It was new, so the long wait lists hadn’t developed (yet).

So we went through an entirely new health system and got the same diagnosis, but this time at least, we had the single sheet of paper our insurance company wanted to see.

That was two weeks ago.  Now, we are in the midst of building our team of therapists for our son.

We’re the lucky ones.  It’s been less than a year for us to get all of this figured out.  My heart goes out to those of you who are still trying to get answers, who are still on waiting lists, who don’t have insurance, for those of you who simply want the best for your child, and are being told, sorry, you have to wait.

I’m rooting for you.

And please, let me know if you need someone to make a few nasty phone calls to get the ball rolling.  I can be highly persuasive.

Photo Credit

“When did you first suspect your son has autism?”

Um, never.

Autism was never on our radar, mainly because my husband and I had no real concept of what autism even was (we are learning quickly).

Regardless, I have been asked a form of this question by countless therapists, doctors, psychologists, pediatricians, teachers, social workers, friends, and family these past two months.   I’m never quite sure how to answer them.

And it’s a dangerous road to travel down, the “I should have known” road.  Trust me.  I’ve been down it.  It’s dark, dangerous, and inevitably leads to a dead-end.

The reality is that Big C is my first child, so I have had no frame of reference for what is ‘normal.’  To me, he is a perfectly ‘normal’ kid, albeit with some quirks (who doesn’t have those?), a bit of eczema, fearlessness, and an impressively high tolerance for pain.  He didn’t have any of those potential “red flags” of delayed speech or developmental delays.

But, oh, that temper.

It’s not uncommon at a family gathering to hear, in reference to my son, “He comes by it honestly!”  Both my dad and I are notoriously known for our hot tempers, so we’ve always chalked up Big C’s aggressiveness merely to temperament and family genes.

But then it got worse.

Big C started attending daycare at five months of age and everything was pretty smooth until he reached about 13 months.  Then, the shoving, slapping, and biting of other kids (and daycare staff) moved beyond the realm of ‘normal.’  The temper tantrums were getting more elevated and he was starting to bang his head on the floor when he got frustrated.  There was talk of  suspension (you can imagine how good that felt).

Then, it actually happened.  I’ll never forget it.  It was September 2012, the end of the first week of school (I’m a teacher: we’ll open that can of worms at a much later date).  I was pregnant with my second, and I got a call (not even a face-to-face) that Big C  wasn’t welcome at the daycare anymore.  I remember having to hang up the phone because I was sobbing.  I had never been so humiliated in all my life.  I felt like I had failed my son and so failed as a mother.

But we picked up the pieces.  My husband and I both took days off of work while trying to find another alternative (we had my parents to help too which was incredible).  We decided a nanny was the best fit for Big C at the time.  He simply wasn’t ready to be in a group setting.  We found someone we immediately connected with.  Big C liked her.  We liked her.  It was a done deal.

In the spring of 2013, little C was born with no complications, I took some time off of work to be with my boys, and the nanny said she’d love to watch both of them at the start of the next school year.  Life was pretty perfect.

And then it wasn’t anymore.

In the fall of 2013, we thought it’d be a good idea for the nanny to take Big C to preschool twice a week so he could start getting acclimated to other children.  It had been a year since he’d been removed from his previous daycare; we assumed he had matured and would be fine.

But he wasn’t.  He struggled immediately, and after months of trying, we chose to remove him.  It wasn’t a good fit.  Meanwhile, our nanny was visibly stressed and struggling with Big C.  She made comments that it felt like he was regressing and that she didn’t know what to do anymore.  Then, in December, right before Christmas break, she quit.

I didn’t cry this time.  I laughed.  Granted, it was hysterical laughing, but I wasn’t throwing a pity party this time.  I took it as a sign that he needed to be in a daycare again, full-time, one that could provide him with the resources he needed.  What those resources were, I had no idea , but I wasn’t going to have him form an attachment to another nanny, only to have it severed again.

We lucked out.  With some recommendations from friends, we found a daycare through our local school system who claimed they had never kicked a kid out (seriously, I asked).  We decided to give it a try, and Big C is still there now.  They’ve been incredible working with him, challenges and all, and have guided us through some pretty overwhelming stuff like the creation of an IEP.  I have no doubt they will be a tremendous asset to us as we continue to deal with this very recent diagnosis of autism.

So how did we finally find out Big C has autism?

You’ll just have to read the next post, my friends.

Photo Credit

When Strangers Call Your Child “Bad”

It was last August, and it still pisses me off.

I was with my sister-in-law and her two kids at one of those questionably sanitary play places with all the giant equipment for kids to climb on. I was with my three year-old (spoiler alert: turns out he has autism, but I didn’t realize at the time) and my four-month-old son. Needless to say, I was tired.

Sidebar: I pride myself on being a mom who diligently watches her child in any group or public setting. I have to. My son is aggressive. He’s been kicked out of daycares (yes, that’s plural). I monitor him closely because I fear for the other children. His aggression is exhausting, anxiety-inducing, and downright embarrassing at times.

Enter cranky old lady shouting, “That boy is hitting her!  That boy is hitting her!”

The pit of my stomach drops. I swear I only looked away for a minute! Gulping, my eyes glance up to the top of the play structure (unreachable for any average-sized adult) and see my oldest son hitting a girl about twice his size. I can guarantee you what happened.  The older girl probably bumped him as she walked by, and he assumed she was trying to hurt him.  In a flight or fight scenario, he’s all about the fight.

Regardless, it’s obviously not okay to hit other kids, so I tell him to come down from the structure and “take a break.”

So while he sits next to my sister-in-law to cool off and calm down, I head to the food counter to order some lunch, baby in tow.  About ten minutes later, as I’m walking back balancing hot dogs, drinks, french fries, and baby, I hear my sister-in-law (bless her heart), talking heatedly to the cranky old lady.

“What’s going on?”  I ask.

The woman glares at me and says, “That boy of yours is bad!  Maybe if you didn’t raise him to hit, he wouldn’t be!”

At this point, I’m visibly shaking with rage.  I imagine myself decking the cranky old lady in the face, then standing triumphantly over her body.

Sometimes it’s so fun to imagine.

Instead, I take the high road and step inches from her face (my son’s not the only one with the fight response).  I say a lot of things I can’t exactly remember anymore, but it is something along the lines of, “Are you kidding?  You think I teach my kid to hit?  How dare you!  He’s three!”

Whatever I said, or how I said it, must have been intimidating on some level because she backed away and didn’t speak to us the remainder of our stay.  She did, however, speak to the two little girls she was presumably a nanny for, calling them “bad” when they made a mess throwing their trash away (clearly cranky old lady has her own set of issues).

Why do I bring up this little anecdote for my first post? Because it is a prime example of what I fear. People judging my son. Judging me. People’s inability to see beyond face value. It terrifies me. It makes me so angry I want to punch something. Hard.

So instead, I write. Writing about that cranky old lady is its own sort of cathartic release.

And please, keep reading.  I have so many more stories to share.

Photo Credit: AbbyD11
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