Autism and Circle Time Success

 

Recently, my posts have had a dark-humored tone, giving my friends “expecting” bone-chilling nightmares.  Today’s post is a bit more upbeat and a blissful reminder that perseverance, intuitiveness, and a deep respect for a child’s emotions can earn you a fast-track ticket on the Mommy Success Express.

A little over a year ago, when Big C first attempted preschool-style classes, it was disastrous.  Music class led to tantrums and instruments used as weapons.  Attempts at soccer led to chases around the gymnasium with zero interest in the children around him, let alone the ball.  Gymnastics became a free-for-all with circle time treated as a detour through Hell.  He was kicked out of a daycare, more or less kicked out of a preschool, and at the advent of his new daycare in January after the nanny quit, circle time was still a looming obstacle to conquer.

Given this back story, you’ll better understand why today was such a turning point, not only for Big C, but for me as his mother.

For those of you following my blog know, Big C is receiving in-home ABA therapy.  To supplement that, I have been taking him to a social skills class as well as organizing and participating in a variety of play dates to get him practice socializing with other kids (that, and to get me out of the house because I crave adult interaction).

Today, I decided a trip to our local library story hour would be great practice for Big C, not only with socializing with other kids, but following directions by another adult.  I was apprehensive, especially since the preparations to get him out the door were a little rough this morning, but I was meeting with friends and knew the snippets of conversation I could snag from them would recharge me for the day.  Plus, there was a part of me almost morbidly curious to see if Big C could even do it.  There was also another part of me that was terrified as I would also have my 15-month old son (Little C) in tow.  Two against one is never good odds, but I have great friends who I knew would help at any sign of disaster.

We arrived a little early, which is both a blessing and curse.   Yes, it’s impressive not to miss the festivities (those with kids know how hard it is to get them out the door), but arriving early also means unstructured “down” time which always freaks me out because it freaks Big C out.

But it was okay.  In fact, it was just fine.   Big C greeted one of my friend’s children with a smile, most definitely invading his personal space, even patting him on the head, but being “overly friendly” with a greeting is at the bottom of my list of social skills to work on with Big C.  I’m just pleased Big C acknowledged him at all and didn’t growl at him (as he may have in his younger days).

Once the story hour got rolling, Big C enjoyed singing the “Welcome” song while Little C clapped at the end, all smiles.  Big C was the first to raise his hand and share an idea about what to feed the dog puppet the librarian had: “Dog food!” Duh.  Whenever Big C got remotely off track, I whipped out my “to-go” set of visual cards to remind him when to “sit” and be “quiet.”

Then, about twenty minutes in, he said, “I’m tired.  I want to go home.”

I said, “Are you sure?”  He said, “Yes, I’m very tired.  I want to go home.”  I said, “Okay, thank you for using your words to tell me how you feel.  Let’s go home.”

And we did.  And that was it.  That was it.  

Anti-climatic?  Sorry.  I couldn’t be more happy about that.  For me, this was a moment of triumph.

For some parents, they may think I gave in by leaving; others might scoff that a near four-year old couldn’t last the entire hour. Frankly, I don’t care.  In my mind, he had the wherewithal to recognize he was tired, and the trust that he could tell me, knowing I would respect his feelings.

Wow.  Feels good to be riding that train today.

Taking a ride on the Mommy Success Express.
Taking a ride on the Mommy Success Express.

 

 

ABA Lessons: Extinction Bursts will make you question why you became a parent

ABA Therapy: Applied Behavioral Analysis (recommended treatment for children with autism)

A central concept of ABA therapy is that you ignore negative behavior and respond enthusiastically to positive behavior with a reward.  Often, verbal praise and recognition is all that’s needed (at least that’s the end goal).  Naturally, being ignored can be stressful and downright irksome, resulting in even more negative behavior.  In the ABA world, they like to call this “extinction burst.”  Basically, the child is going to try even harder to be noticed until he/she finally figures out it’s not going to work.

Sounds fairly basic, even easy, right?

Allow me to provide a little “snapshot” from this evening before you make up your mind.

***

Big C’s 4-6pm ABA in-home session is just ending while I am setting dinner on the table for three (another late night for Daddy Catharsis).  Big C comes rushing out of the office, smiling and pleased.  Okay, that’s nice, I think.  His therapist and I chat for a few minutes, then she finishes up in the office while the three of us eat.

After about five minutes, Big C starts pointing his fork at me and muttering, “I’m going to stab you.”

Previously, my inclination would be to grab the fork and say, “No.  That’s not nice.  Eat your dinner.”  Instead, I remind myself to ignore it.  I take a deep breath and do exactly that, focusing more on 15-month old Little C who is right beside me, tossing parts of his dinner on the floor.

Suddenly, a fork goes whizzing past my face.

I whisper an expletive under my breath, calmly pick up the fork off the floor, walk into the kitchen, and place it in the sink.

“Hey!  Where’s my fork?” Big C comes rushing into the kitchen to see where I’ve placed it.  This begins our “dance.”  He grabs a chair, places it by the sink, and attempts to grab the fork.  I take him off the chair, then put the chair back.  I lost count how many times this went on.  A few punches are thrown (from his end).  He starts laughing. It totally becomes a game to him.  Probably I should have ignored it and stopped putting the chair back.  I don’t know.  This ignoring shit is complicated.

After a few minutes, Big C moves on into the office where the therapist is taking notes.  He starts throwing random stuff onto the floor.  I watch him do it from a distance.  He looks at her (who, naturally, is completely ignoring him), throws something on the floor, looks at her again, then does it again and again and again.  I have never witnessed, from the outside, such a blatant call for attention.

Once the office is trashed and the therapist has left wishing me well (thanks), Big C attempts to gain my attention again.  “Mommy, I have to show you something.  I was a bad boy.  I made a big mess.”  All of this is said with enthusiasm and a huge grin.  I refuse to acknowledge his existence.  I continually turn my head to avoid making eye contact.

That stresses him out.  “Mommy, Mommy, Mommy, Mommy, Mommy, Mommy……” (lost count on those too).  I am determined to ignore him until he does something positive.

However Big C decides more negative behavior is best.  As I am trying to clean up dinner (which includes putting away Big C’s largely uneaten meal: too bad buddy), Big C takes an exercise mat, ties it to a chair, then drags the contraption around the house multiple times, causing all kinds of destruction in its wake.

At this point, I’m holding Little C in my arms to ensure his protection, while muttering a tirade of expletives under my breath.

I then make a grand show of playing with Little C, verbally citing how wonderful he is and how much fun we are having with our Mega Blocks.

After about twenty minutes of this battle of wills, Big C finally walks over to me and says, “Mommy, I’m sorry.”  Those. Actual. Words.

A choir of angels appears.

I hug him and tell him I accept his apology and invite him to play with us.  While we are all three playing blissfully and peacefully together, I cannot deny the perfectionist side of my personality reeling from the havoc that I will be stuck putting back together later.  I push this aside for now though and savor in the moment.  It worked!

Silly Mommy Catharsis.  If it were that easy, everyone would do it.

Two more minor incidents occur, one involving a hammer aimed at  a glass door, but I won’t bore you with the details.  Suffice to say, I decide early bedtimes for both boys is a well-deserved treat for Mommy.

Too bad.   

While Little C goes down without a hitch, Big C is a little unsettled by the fact that he didn’t get to finish dinner, have snack, or watch the show he wanted.  Apparently, my chose of bedtime book also sucks, as he decides to rip every book off his shelf.  Then he decides being forced to stay in his room to sleep is ludicrous and tries to make a run for it.  I do not allow him to do so, calmly tell him good night, then close the door.  I know what’s coming though.  I keep a hand on the handle from the outside and, sure enough, he tries to open it.

Oh, is he pissed.

And may I just say at this point, I am dog-ass tired.

I keep a grip.  It is not easy.  My 40-lb three year-old is shockingly strong.  When that doesn’t work, I hear him make a running start and slam his body against the door.  He tries this at least a half dozen times.  I hear the startling smash of toys hitting the door.  I am in shock, and thankful, that his little brother is not waking up in the room next door.

Then, I hear the light switch turn on and the sound of Big C playing.

And now I get pissed.  Tears of rage and exhaustion wash down my face.  This isn’t supposed to be fun!  You are supposed to be asleep!

I walk in, pick him up, and literally toss him into his bed.

His smile is nearly evil in its triumph.

Score: Mommy Catharsis – O, Big C – lost count.

***

On nights like this, I like to think man invented wine solely for me.

 


mdanys / Foter / CC BY

 

ABA Lessons: Don’t be afraid to be that annoying student who has a question for EVERYTHING.

ABA Therapy: Applied Behavioral Analysis (recommended treatment for children with autism)

It’s been a month now since we began in-home ABA therapy for our three year-old son diagnosed with high-functioning autism.

To say it has been challenging would be a gross understatement.

I’ve been uncomfortable for most of these weeks.  I don’t know much about ABA therapy, so I started this process by taking a step back to merely watch it in action, still asking questions, but getting generally vague responses from Big C’s line therapists.  I wasn’t hearing from his lead therapist much, except at weekly team meetings she attended bi-monthly, and after two weeks in, one of the therapists Big C started with was replaced with someone new.

My frustration began to mount with the intensity of Big C’s.  He was adjusting well with the concept of working at the table for rewards and had moments where he even seemed to enjoy it, but nearly every session ended with tearful tantrums lasting sometimes as long as 45 minutes and him crying, “I just want  my Mommy!”

Enough is enough.  Last week, I decided I was done with trusting the therapists.  I demanded more concrete answers to my questions.  I demanded shorter sessions for my son.  I demanded more work on functional skills.  I demanded a therapist attend Big C’s social skills class.  I demanded more session time built around socialization and play.  I demanded the right to videotape sessions.  I demanded parent training.  I demanded more guidance on effective discipline.  I demanded more open communication among all of the therapists and myself.  I demanded better for my son.

And I got it.

And that feels damn good.

ABA therapy still may not be the best option for my son.  The verdict’s still out and, to be far to the process, it’s just too early to tell. But there’s no way I’m going to take a backseat and “let it happen,” ignorantly assuming the therapists know my son better than me. Ironically, it was Big C’s newest therapist that reminded me to reclaim my gut.  She reminded me I am my son’s advocate, his voice in this complex and overwhelming process.

Most importantly, she reminded me of the end goal: to help Big C reach his greatest potential.  I’m not going to call autism a disorder because, on some level, it’s offensive, implying that which makes him unique is deficient in some way.  I will say though that some of the characteristics of autism cause my son great distress, and I want to alleviate as much of that as I can.

For that reason, we will continue to try ABA therapy, with the strength and conviction to abandon it for something else if it doesn’t work.  Meanwhile, we will explore other therapies and research methods to alleviate the pain he feels.

It’s empowering to have my confidence, my gut, back.  Really, who I have most to thank is that dorky, purple glasses-clad little girl I once was, eager to learn and always full of questions.  I should have known better to try and silence her.  She may have once been annoying to her peers and a bit of a teacher’s pet, but she is alive and well in me, and by God, she will save my son.


Veronique Debord / Foter / CC BY-SA

 

ABA Lessons: get a big ‘effin paper bag and breathe into it

ABA Therapy: Applied Behavioral Analysis (recommended treatment for children with autism)

Read my page on ABA therapy and how it applies to our unique situation.

I receive an email from Big C’s ABA Consultant with his upcoming ABA schedule.  It consists of 21 hours a week of in-home therapy.

Shit just got real, y’all.

As I try to decipher the schedule and input it into my Google calendar, I feel the anxiety begin to rise.  A frenzied monologue begins racing through my mind:

Okay, there are three therapists…Carly, Shelby, Jennifer….his consultant is also Jenny…oh that’s confusing.  Carly takes Mondays…Shelby takes Tuesdays…no, Thursdays…well, Thursday evenings, Tuesday mornings…Tuesdays are three hours long, Wednesdays are two…wait, two sessions back-to-back…guess that means no naps on Thursdays and Fridays…did they leave time for his social skills class on Tuesdays…yes, okay, good…crap, I forgot I have to cancel next Wednesday already for work…oh, he has that new gymnastics class for children with autism on Thursday too…that’s such a long day….Saturday mornings with Jenny, I mean Jennifer…six days a week….wow…

I am going to have strangers in my home for 21 hours a week.  

I start to hyperventilate.

How am I going to do this?  How will I keep the house picked up with a three year-old and a one-year old running around?  Can I still wear sweat pants around the house? Do I have to put on make-up every day?  Will I have time to shower? How will I learn the therapy while watching Little C?  When will I get time to play with Big C without somebody breathing down my neck?  Will this be too overwhelming for Big C?  Will he have time to be a kid?  When will I cook dinner? When will I grocery shop? Will I see any of my own friends this summer?  Will my husband and I ever have time for a date again? 

When will I have time to breathe?

But then I do.  I take a long, deep breath and say to myself, “Stop freaking out and calm the eff down.  What an amazing problem you have.  You are overwhelmed because your son is going to get an intensive amount of potentially life-changing therapy.  You are damn fortunate.  This is real.  It’s actually happening.  He is going to get all the help he can possibly get.  It is going to be okay.”

Is it going to be hard?

Yes.

Is it going to be overwhelming?

Yes.

Am I going to find myself in tears of exhaustion and frustration at inconvenient times?

Yes.

Is the therapy going to help Big C?

Yes.

And it is that ‘yes’ that I must constantly remember to keep me centered, keep me focused.

I can do this.  We can do this.  It is going to be okay.

Because if there’s one thing I’ve already learned about ABA therapy, it’s that it’s not for the faint-hearted.  It’s an “all-in” kind of therapy.

That, and just breathe, or else risk passing out, and I don’t have time for trips to the hospital.  Have you seen my schedule?

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~Chaos Contemplated (for now)

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Oh yeah, I have another child.

Guilt: a feeling of have done wrong or failed in an obligation.

Mommy Guilt: guilt multiplied by 1000.

Fellow parents of multiple children, I hope, I pray, you know what I’m talking about.  Please tell me I’m not the only parent who occasionally forgets, for fleeting seconds, that she has another life she is responsible for.  No, I haven’t left my child in the car or forgotten him at daycare (knock on wood).  What I have done though is obsessively worry about my oldest son so intensely that I’ve forgotten the quiet, contemplative little dude sitting right beside me.

It feels awful forgetting.  I love my youngest boy.  He’s thirteen months old, and he’s awesome.  He’s toddling around, climbing up stairs, and eating with reckless abandon.  He loves flashing his six pearly whites (creating dimples in his chunky cheeks) and showing off his skills as a yogi master (the boy is flexible, I tell you).

But he doesn’t get the consistent attention he deserves.  My Mommy Guilt is on overdrive these days.  I cannot figure out how other parents do it.  How do you devote your attention and focus on both children equally?  Seriously, I’m asking.  Tell me your secret.

Having  a child with special needs only exacerbates the problem.  Because of his recent ASD diagnosis, Big C demands, and I mean literally demands, my attention.  He needs my help right now.  There are therapies he needs and that means hours of prep, planning, and organizing on my part to make these therapies a reality for him.

But what about Little C?  Is he getting what he needs? Am I giving him enough of my undivided attention?  Is undivided attention even a part of my reality anymore?

I cannot stop wondering: in an attempt to help my oldest son, am I detrimentally affecting my youngest?

In the meantime, Little C is getting better at demanding attention.  He’s learning how to effectively use his fake cry (a born thespian), and he’s proven to have a natural talent for the temper tantrum, but is this because of his natural disposition or is it a reaction to my inattention?  Just last week, the daycare staff informed me Little C was starting to get “a little mean,” hitting and pushing the littler babies.  I wanted to crawl into a hole.  I began to imagine a recycled future of daycare suspensions, daycare removals, and nannies quitting all over again.

But that’s not fair.  It’s not fair to Little C.  He’s not his big brother.  He’s his own little guy.  He should be allowed to create a future that is uniquely his, flaws and all.

I know figuratively beating myself up over all of this is counterproductive, getting me nowhere but spinning in circles, but I cannot shut it off.  It’s frustrating when people tell me to stop worrying so much.  Don’t these people know I would if I could?

I. Feel. Guilty.

My only solace is that the guilt stems from a genuine desire to be a good mom for my boys.  I give a shit.

That has to count for something.

just a little boy by zznzz
http://zznzz.deviantart.com/

 

“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.

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Lost in a Lingo-laden Land

74.

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.

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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.

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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.

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Photo Credit: AbbyD11