When Your Child Says He Wants to Die

He’s seven. He stomps down the steps of the school bus carrying an elaborate Styrofoam leprechaun trap. The bright sun and blue skies are in stark contrast to his moody face. His eyes meet mine for a fraction of a second, then he drops the Styrofoam contraption. He rears his head back, throws his small body into a nearby parking lot space and begins to howl.

Meltdown mode.

I’m used to meltdowns. My son has been having them since he was thirteen months old. Years of practice have made me an expert at identifying his triggers to prevent the meltdown altogether or waiting him out until his flailing-limbs storm can pass.

This time, his meltdown is the result of frustration at breaking one of his styrofoam cups while getting on to the bus. He is a perfectionist and incredibly hard on himself (inherited traits) and after putting hours into this elaborate trap (truth be to told, it was pretty cool), having it get damaged was simply unacceptable.

As I try to calm him down with soothing tones, I am also calculating how much time I have before a car pulls into the exact parking space he is flailing in. With a sense of urgency, I scoop him up, set him into our car, close the door, then take a very long breath before I join him in the backseat. I sit. I wait. After about twenty minutes, he is ready to listen and ready to talk and we continue on with our day.

As I said, I’m used to meltdowns. What I haven’t grown used to are his piercing words.

“Just kill me! Please! I want to die!”

I’ve heard these words before.

He was five the first time he told me wanted to die.

This is not “normal” for neurotypical kids. I found that out rather quickly when I asked friends if their own children had ever said this.

A resounding no, followed by incredulous looks.

Nothing can prepare you for these scary words coming from the mouth of someone you would gladly give your own life for.

My mother’s intuition assures me he doesn’t literally mean what he is saying, but the small speck of doubt prompts me to seek help. My son’s life isn’t something I am willing to take lightly.

We are fortunate enough to live near a reputable pediatric psychologist who specializes in neurodevelopmental diagnoses. He is someone our son truly enjoys talking to (that, and playing with the amazing arcade in the waiting room chock full of classic video games).

After the “leprechaun trap meltdown” (which failed to catch a leprechaun, but succeeded in capturing a few dropped coins from the leprechaun’s pocket), I find myself sitting in this psychologist’s office, sharing the story with him, worry etched on my face.

Without a moment’s hesitation, he says, “That’s very common in ASD kids. When they say they want to die, it means they’re sad. When they say they want you to kill them, it means they’re very uncomfortable and need a break.”

Speechless. An audible sigh of relief. “Can I get you to write that down?”

He continues. “Kids with ASD feel emotions on such a strong level that they are quick to react, both verbally and non verbally, and often in inappropriate, scary ways. The goal for you is to teach him to say the words that convey what he really wants. Teach him to say, ‘I feel sad’ or ‘I need some space because I’m angry.’ It’s not easy, but it can be taught.”

I am silent for a moment.

“Okay.”

I give my son an extra big hug that day (I want to give his doctor one too, but I settle for a smile and a thank you), renewed with the knowledge that he is going to be okay. That while we we are working through another autism milestone, we are not working through it alone.

I share this story with you in hopes it will provide you with some relief. Relief that if your son or daughter has said these scary words, that they are going to be okay too.

I also want to remind you to always trust your parental instinct, but don’t be afraid to have it affirmed by trained professionals, especially when the concern could be life-threatening. Share your fears with someone else so you don’t have to carry the burden of worry alone. Peace of mind is a beautiful gift.

Okay. Time to go give my little man another big hug.

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Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!

Want to join in on next month’s Voices of Special Needs Hop? Click here!

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How a Seven-Year-Old Can Educate the World: #ShareYourAutism

My seven-year-old son recently asked me how many surgeries he had to have before we realized he had autism.

It was a reminder to me of how little any of us really understand autism. In truth, trying to explain his diagnosis to him was hard. It’s so, well, open-ended. It’s a spectrum, right? People hear the word autism and picture a puzzle piece.

During the same conversation about the amount of surgeries it took to determine his diagnosis, my son told me he met a boy whose brain worked differently too. He has…hamburger something?

Aspergers. Which isn’t technically a diagnosis anymore.

And the confusion builds…

What does autism mean?

The prefix “auto” means “oneself” and the suffix “ism” is used to create action nouns, so the term literally means, “to retreat within one’s self.”

In 1908, the term was created by Eugen Bleuler to describe his withdrawn schizophrenic patients.

In the DSM-V, it’s categorized as Autism Spectrum Disorder 299.0.

The Oxford Dictionary defines it as a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

What does autism mean?

Here’s what I know.

My son has autism, so it is a word that is very personal to me. Even more so to my son. He wants to understand. Ultimately, I can only share with him what limited knowledge our medical field currently has while they continue to test hypotheses and make claims that may or may not be accurate.

So we wait…

In the meantime, what we all have, are our stories. Stories of our own experiences with autism, whether it be directly or as a loved one.

My son, at seven years old, had the courage to share his story to his entire first grade class. With help, he created a Google Slide Presentation, read from it using the classroom’s Smartboard, and answered questions from his peers. He even redirected the class when they got a bit off-topic (Who’s your favorite Pokemon?) by moving back to a specific slide and asking, “Okay, who has a question about autism?”

In our house, autism means being brave.

What raising a child with autism has taught me is that we shouldn’t avoid talking about it. We shouldn’t be embarrassed or afraid; autism is another way of thinking and viewing the world. It may look differently or feel differently or act differently from what our society views as normal, but that doesn’t make it less. In fact, as I’ve come to learn, it makes life more.

I ask all of you, not just this month of Autism Awareness, but from now on, to not be afraid to talk about our differences with our children. If you don’t know the answers, let them know. Then go find those answers with them. If you shy away from the hard questions – What’s wrong with that kid? Why is he spinning around and flapping his arms? – you are inherently teaching them that what they see is something to be afraid of. Fear stems from a lack of knowledge.

Sharing stories can ease that fear.

My son, and so many others like him, are a living symbol of autism. It is a badge of honor, as well as a heavy burden. I ask all of you to lighten his load. Accept him. Love him. Embrace him.

Continue to share and to listen so the stigma and fear and frustration surrounding autism can fade.

My son did.

So can you.

#ShareYourAutism

My son’s presentation (modified for anonymity)
Please feel free to modify and use!

 

This post also proudly appears on The Mighty.

Being Brave

Four years ago, my son was diagnosed with autism. He was three. It was scary and confusing and very lonely.

Four years ago, I started this blog. It brought me both relief and compassion as I learned with other parents how to understand and help my struggling child. I learned how to laugh and to cry at my mistakes and misunderstandings. I had found my tribe.

Then I stopped. It’s been nearly two years since I last posted and I’ve spent much of that time grappling with why. Busy with work. Busy with raising children.

Busy being afraid.

Two years ago, I posted something heartfelt, and it was received with heartless comments. Many a blogger friend had told me not to bother reading comments at all for that very reason, but my temptation was too strong. In retrospect, the comments paled in comparison to some my blogger peers had endured, but it was the first time I wasn’t received with open arms. It hurt because the negativity was directed towards my son. Strangers claimed that he should be institutionalized, that he was a danger to other children.

It scared me so much that I asked Scary Mommy to change the author name to Anonymous. Then I never looked at that post again, and I put my blog – my writing – to rest.

Two years went by.

Then this past December, something stirred within me. I was in my son’s first grade classroom, watching him present to his peers what autism is and that he has it.

At seven years old, my son is one of the bravest people I know.

A few weeks went went by, and I couldn’t shake the feeling that I needed to write, to share my son’s extraordinary story, but I wasn’t ready yet to let that fear go. It manifested itself into anger. Carrying the weight of all these stories wore me down; I found myself snapping at my friends, my coworkers, my students, my husband, my children – myself.

Then something extraordinary happened.

I attended my son’s annual IEP and was overwhelmed with pride at all the success stories his teacher and support staff shared. At one point, his social worker said, “He is already such an advocate for autism!”

It stopped me in my tracks. “Yes,” I said with a smile. “Yes, he certainly is.”

If my seven year-old son can be brave, so can I. It’s time for me to start advocating for him again.

Someone I greatly respect told me recently that I need to make writing a necessary part of my day. Treat it like taking a shower or brushing your teeth. Writing is an integral part of who you are as a person.

So I’m writing again. I can’t wait to tell you everything you’ve missed these last two years. From learning about his diagnosis to defending himself against a first grade fight club, I can’t wait to share how brave and beautiful my son is.

I can’t wait to share my story – the story of being his mother – with you.

Stay tuned.

Oh, and here’s the post that once scared me that I now proudly share: An Open Letter to my Son’s Preschool Class.

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Lightning Bolt Underwear: why you need a pair

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Boy runs. Mom weeps. Parenting.

My four year-old son ran his first race: a 3K.

It started with a declaration to the lady handing out bibs and shirts: “I’m wearing lightning bolt underwear!” He was convinced his underwear would give him powers to run quickly.

They did.

When the bull horn went off, he took off like, well, a lightning bolt. Of course, it didn’t last long. He gassed out after a minute or two, and it wasn’t long before he was experiencing the grueling middle of a race that runners know so well.

But he persevered. Sure, he may have fussed, whined, even cried, but he worked through his unique struggles. He kept going, even though so many passed him by. He persevered.

When the finish line drew near, his adrenaline sped up as he realized he could do it.  The lightning bolt underwear’s magical properties kicked in and suddenly his feet took over. He wasn’t stumbling along – he was running! The crowd cheered as this skinny little boy – all elbows and knees – pushed himself to the breaking point, literally sprinting.

As I watched him near the finish line, shouting “Rescue Bots!  Roll out!” and smiling profusely, I couldn’t help but marvel at what a metaphor for his young life this first race was.  He starts every task with a firm belief he can do it. Often, the initial confidence transforms into anger, frustration, and self-pity, but with the right encouragement, he always perseveres, despite so many obstacles.

Naturally, once he did cross the finish line, he took the time to assume a super hero stance, flexing both of his arms.

The boy loves to show off the guns.

If there’s anything to learn from this little anecdote, it’s that everyone needs a pair of lightning bolt underwear, that tangible something that reminds us we can accomplish our goals, that nothing’s beyond our reach.

Did I mention my son has autism? If a race full of hundreds of people isn’t a recipe for sensory-overload, I don’t know what is.

I’m telling you: lightning bolt underwear.  Go get a pair.

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Is this autism or NT kid-stuff?

NT: an abbreviation for neuro-typical, a term often used in the autism community to reference those who are not on the spectrum.

Ever since my four year-old’s diagnosis of ASD over eight months ago, I find myself constantly wondering, “Is this behavior the effects of autism or just a kid being a kid?”

Self-doubt and motherly instinct are in a constant battle of wits these days.

I don’t just ask myself this question.  I ask my husband, my friends, my parents, my son’s army of teachers and therapists.  Naturally, I get a different response, depending on the person (and the scenario I’m describing).  Let’s see what you think:

Big C is head-butting a group of girls at school.    Autism or NT?

Big C suddenly asks, “What’d you say?” to virtually EVERY demand I place.   Autism or NT?

Big C told his Occupational Therapist very matter-of-factly, “I’m going to kill you.”  Autism or NT?

Big C has a sudden preoccupation with dying and is starting to say, “I’m dead,” though I am very certain he has no idea what this actually means.  Autism or NT?

Big C is having a destructive streak, ripping wall decals, blinds, and picture frames off the walls.  When asked, “why?” (which I’m told is really too advanced of a question for a four year-old in this type of situation) he merely replies, “I don’t like it.”  Autism or NT?

Big C is becoming defiant again, telling me, “No!” and back-talking me constantly.  Autism or NT?

Big C is obsessed with winning.  He has to be the first one up the stairs, the first to open the door, the first at every game.  When he’s not, he has an over-the-top screaming, crying, temper tantrum.  Autism or NT?

Big C is incapable of walking through the grocery store without running his hand along every item on the shelves.  Autism or NT?

While Big C’s 19-month old brother is eager to play catch with him, Big C would rather take the ball and run away, keeping it for himself.  Autism or NT?

While in the urgent care waiting room, our 19-month old son is content to sit and play cars, while Big C is literally trying to climb the walls, settling for my husband’s back, ripping the leaves off the fake plants, and taking the toy cars from his younger brother (now both are wailing), all while the older couple sitting in the waiting room gives us death glares.  Autism or NT?

Essentially, it’s all very muddled and confusing and full of blurred lines, begging the potentially more important question, “Does it matter?”

Certainly, getting at the root of a behavior can help, but in many situations, there’s no “fix” or “quick” solution.  My son is my son, autism label or not.  He’s always going to leave me in wondrous awe (and perpetual frustration).

Any other moms out there wish they had supernatural intuition?

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Why does my Toddler Hate Me?

Jealousy: resentment against a rival (ahem, husband) who enjoys success (ahem, our toddler’s favoriteagainst another’s success (or lack thereof.  The boy always picks his Daddy).

My 18-month old son is starting to give me a complex, people.  A genuine complex.

I’ve been waiting for this whole “Daddy” phase to become just that – a phase – but it’s been months now, with no end in sight.

Don’t misunderstand me.  I love that my husband and youngest son have this amazing bond.  It’s sweet.  It’s adorable.

BUT….

Does the child have to blatantly show his distaste for me?

Think I’m exaggerating?  Allow me to prove myself with a few poignant examples:

Daddy has to leave to run some errands.  Little C is so distraught Daddy has left, he flings himself upon the floor and will not let me console him.  He cries for upwards of 20 minutes.  He is struggling so hard to get away from my clutches, I nearly drop him on more one occasion.

Daddy isn’t home from work yet, so Little C is actually giving me the time of a day with a big ol’ bear hug. Cue Daddy’s entrance.  Little C leaps out of my arms so quickly you’d think I pinched him.  Sayonara Mommy.  Daddy’s home.

The whole family is relaxing on the floor playing with Mega Bloks.  I scooch over beside Little C to help him with the tower he’s building.  He stops what he’s doing.  He makes an angry scowl directed at me, picks up his tower, and promptly plops down beside Daddy.  I swear to God he smirks.

I’m in the kitchen.  Little C is playing with a toy car a few feet away.  Daddy is in the living room, out of sight, out of mind.  Little C suddenly slips and falls, banging his head on the floor.  I immediately drop what I’m doing, rushing to his aid.  As I begin to hold him in my arms, he looks at me – there’s that scowl again – then runs across the house to Daddy’s arms.

I notice Little C perusing the bookshelf.  I sit beside him and ask him if he’d like me to read him a story.  He gives me that telltale scowl, then saunters over to Daddy.  Once he’s in Daddy’s lap, he looks at me, eyebrows narrowed, then hugs Daddy.

Wtf?

Don’t get me wrong.  At times, it’s kind of convenient that the little guy wants Daddy.  Considering we have two attention-seeking boys, this often makes life easier, and even occasionally allows me five minutes of “me time,” (which we all know just means doing the dishes in peace or making lunches without a little munchkin clinging to my legs.  Am I right, ladies?).

If I’m being perfectly honest though, the Mommy pride is a little hurt.  Sometimes, it’s a lot hurt.

Am I the only mother experiencing this?

Don’t leave me hangin,’ Mamas!


Valocity Studios / Foter / CC BY-SA

 

 

Why NOT throwing your child a birthday party is okay

Bounce houses, rambunctious party games, sugary candy, caffeinated soda, cheap party favors, food left out on banquet tables for children to grab, spill, and lick, large pinatas inevitably leading to kids blindfolded with bats…

If these images send chills down your spine, you’re like me and, likely, you have a kid like mine who gets overwhelmed and overstimulated in a party setting.

Don’t get me wrong.  I love parties.  But now that I have a four year-old with ASD and a one year-old in tow, parties mean work, and lots of it.  I spend my time at parties running around like a maniac, trying to ensure my children don’t create too much havoc and, if they do, at least other parents will see me attempting to stop it versus sitting in a lawn chair enjoying an adult beverage (man, that sounds nice).   The relaxing for me comes at home, hours later when the kids are finally in bed, with my feet up and a glass of wine in hand.

Let’s face it though. It’s become a societal expectation to throw outlandish parties for our children.  Every year around this time, I get catalogs in the mail for kid-party theme kits running upwards of two hundred dollars for decorations alone.

Don’t tell me I’m alone in thinking it’s a little overkill.

So this year, we decided to forego conventions.  For Big C’s fourth birthday this past Friday, my husband and I decided not to throw a party.

Don’t get me wrong.  Big C still had lots to look forward to as we carefully listened to his comments about what he was expecting.  A new episode of Astroblast was in our DVR queue, a paper crown was set delicately upon a couch cushion, and we were sure to say, “Surprise!” when he walked down the stairs to his banner and balloons.  Certainly, we sang “Happy Birthday!” and he blew out four candles.

But…

I didn’t make the cake.  Big C helped me pick it out at Meijer.

I didn’t cook.  Big C got his favorite: Jet’s cheese bread with Ranch dipping sauce.

I didn’t buy party favors or play party games.  Big C spent much of his day playing in the new sandbox his Daddy made him.

I didn’t have a bunch of kids over.  His grandma, grandpa, and great-grandma were the only guests in attendance.

Big C was completely clueless he “missed out” on a big ‘ol party.  In his mind, his every birthday wish was fulfilled.  In fact, he told us repeatedly that it was a “Great day!” and “Thank you very much!”

Big C went to bed happy.

And I went to bed with a happy heart.

And a clean house.

Bonus.

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A version of this post also appears on Sammiches and Psych Meds.

 

Overdosing on Therapy (the real cost behind it)

 

It’s been just over a week now since we parted ways with our in-home ABA therapists.

I feel like I can breathe again.

I have my family back.  I didn’t realize just how toxic the situation had gotten until my husband said the other day, “Do you realize how much calmer you are now?  Big C and Little C too.  Everyone just seems…happy.”

He’s so right.

My little guys and I are sponges.  If one is stressed out, the rest are.  Now that the poorly implemented ABA therapy is gone (I have to say poorly implemented because I know there are some amazing ABA therapists out there), I feel normal again, or at least our family’s version of normal.

With a sense of normalcy came an epiphany last week: I need to stop trying to fix my kid.

He doesn’t need fixing.  He just needs my help.  Shame on you medical community for making me think otherwise.

He needs help learning to cope with his sensory overload.  He needs help learning how to express himself more clearly to others to avoid his own feelings of frustration. He needs help learning how to use his words rather than his fists when his emotions overtake him.

I don’t give a shit if he likes to line up his toys and his Cheerios.  I don’t give a shit if he likes to suck on turkey lunch meat to calm himself.  I don’t give a shit he has to run his hands along the surfaces of a new room.  I don’t give a shit he has to smell everything.  I don’t give a shit that he echoes back what people say.  I don’t give a shit he talks about subjects out of context.  I don’t give a shit that he expresses himself through leaping, jumping, and spinning.

I don’t give a shit that he doesn’t meet the doctors’ definition of “normal” or what I’ve come to know as “neuro-typical.”

I think that my son is awesome.  I think that my son’s quirks are adorable (most days).

Why do I need to try and eradicate that behavior?

Shame on you medical community, hell, shame on you society as a whole, for making me think I need to.

What I’ve come to realize is that two separate medical communities gave my son an unhealthy dosage of therapy recommendations.  The doctors that diagnosed Big C spent all of an hour with him, then doled out pages upon pages of therapy recommendations: 40 hours of intensive ABA therapy, social skills training, parent training, speech therapy, occupational therapy, physical therapy, genetics testing, all sandwiched between paragraphs of text about our role as parents and what we should be doing.

As a parent new to this world of autism diagnosis, I was terrified.   These doctors, these professionals, made me feel like if I didn’t get my son access to all of these therapies immediately, I would be failing him as a parent.

And failing is something I do not do.

Where was the counseling, the medical guidance, through all of this?  After a diagnosis and a twenty-plus page report, we were sent on our way with a list of websites and books to check out.  That was it.

There was never any discussion of, “This therapy list is simply that.  A list.  A list of all the possible options you might pursue.  It’s a generic list we provide all children diagnosed with autism.  Your son is on the mild end of the spectrum, so some of this is a little extreme for him.”

Why wasn’t that said to me?  Did anyone ever consider the toll it would take on us as parents?  The emotional burden placed on my family because of a therapy overdose?  To me, it is the highest form of lethargy.   No one took the time to really talk to us.  They gave us their diagnosis, derived rather quickly, then sent us packing.

Shame on you, medical community.

But here’s the good news.

I’m over it.  I’m putting my trust in my own gut and inclination to research and study a subject until I am an expert in it.

So when the social worker finally calls me back from the first medical community we met with, I can happily tell her to piss off.

I just worry about the other parents, like me, who are going to be unnecessarily overwhelmed by a diagnosis that, let’s face it, is explained piss-poor by the professionals.  I’ve learned more from my new community of bloggers than I have from any doctor.

To those parents, remember you know your child best.  It may seem like obvious advice, but you start to doubt yourself when a doctor and a diagnosis tell you otherwise.


ep_jhu / Foter / CC BY-NC-ND

 

 

ABA Lessons: Ditch the Bad Therapist

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

When I first started this particular blog series, I had grand dreams of sharing all sorts of valuable lessons about ABA therapy.  I imagined all of the amazing ideas I would learn about how to work effectively with my three three year-old son diagnosed with ASD and how blogging about it would help, not only me, but other parents out there.

It hasn’t worked out so well.

I haven’t been blogging much valuable insight about ABA therapy because the therapists we’ve worked with haven’t given us much.  ABA Lesson #2 goes into more detail about the issues we’ve had; it’s been disheartening and frustrating, to say the least.

Though I should say former company we’ve been working with because we cut ties as of yesterday.  I couldn’t feel more relieved.  It all came to a head after Friday’s session.

After our last team meeting, I thought we had hashed-out all of our concerns and had a game plan.  One of our biggest concerns was the back-to-back therapy sessions on Thursdays and Fridays, meaning we would have therapists in our house for four hours and Big C wouldn’t get a nap.  I was very explicit about this being a concern, and I was reassured that the second session would take on the form of a “play session” where Big C and the therapist would socialize through a series of board games.  I was still a little worried, but I thought we’d give it a try.

That is not what happened.  At all.

Here’s a prime example of why some students grow to loathe school.  They get stuck with a shitty teacher who lacks intuition or empathy.

***

The second therapist shows up at the house for the second session and seems a little surprised by the reminder of a “play session.”  I also remind her of my concerns about overtaxing Big C, and that  he seems a little extra tired today.  Unprepared, she hasn’t come with any games, so I have to give her a crash course on how to play Hungry, Hungry Hippos, a favorite game of his we have.

The session take place in our home office, as usual.  It has a glass door, so I can “sneak a peek” if I want, but we keep the door closed to keep my 15-month old out (he’s always interested in what big brother is doing!). The session begins about 4:25 pm with a promise that “we’re going to play and have fun today, buddy!”

First lie.

She starts running drills.  He moves through them fairly quickly, but it is quite evident he is a little wound up, which is actually a sign that he is tired.  It’s the mania before the crash.  The therapist attempts a game of Hungry, Hungry Hippos, but she screws up repeatedly (seriously, it’s not hard) which flusters Big C immensely.  After only one game (which takes, literally, a minute) she puts it away and goes back to “table time” asking him to do a series of tasks for rewards.  Today’s rewards are cheese, Craisins, and iPad time.

She never comes back to any games.  So much for a “fun” session.

By 4:50 pm, twenty-five minutes in, I can hear the meltdown begin.  I am frustrated because he should have had a break already. That was something repeatedly discussed, but I don’t go into the room because I recognize he needs to work through the tantrum before seeing me.

It isn’t until hours later, when I watch the video of the session (something I insisted on a week prior) that I learn what I describe next.  Had I known sooner what was actually going on in there, I would have intervened sooner.

Basically, I feel like I am watching my son suffer a sort of mental torture.  I’m not exaggerating.  She makes promises and doesn’t keep them.  She makes demands: “Touch the table, go ‘Ba!”, match the red card, find the circle, touch your nose, what’s this boy doing on this card, blah, blah, blah,” running drill after drill, then not making good on the promise for a break.

Big C tells her early on, “I’m tired.”  I am so proud.  He is using his words instead of simply having a meltdown.

She doesn’t care.

“Do this (another random, out-of-context task), then you can have a break.”

Lie.

Big C tells her, “My butt hurts.”  He wiggles around and tries to stand, but she restrains his seat so he can’t.

“You just have to work through it.”

Are you kidding me?

He keeps trying to put his head down.

“Put your head up.”

He closes his eyes.

“Open your eyes.”

He starts flailing his arms, getting more and more agitated with every passing second.

“Hands down.”  She grabs his arms and places them on the table.

He starts to get angry.  “Don’t touch me!”   Good for you, buddy.  Tell her what you want.

She ignores him.  She continues to poke and prod him until he is literally sobbing.

“What do you want to work for?  Do you want to work for cheese?  Do you want to work for water?”

Work for water?!?  

“I want my Mommy!”  He has already told her this repeatedly, but it falls on deaf ears.  He tries to get up, but she won’t let him.

“You have to work for it.  Do this.” She taps her nose.

“No!”

“Do this.” She taps her nose again.  After a few more times, he does it.  He wants her to stop and is smart enough to know it is the only way to make it stop.

But it doesn’t work.  Instead, she says, “Do it nicely.”

My three year-old son is completely exasperated at this point.  He has no idea when the end is in sight.  I sure as shit don’t, and frankly, I don’t think the therapist knows either.  She seems to have completely lost herself.  It’s like she’s trying to break him.

And she does.  At this point, he is going through all of these crazy motions, tapping the table, touching his nose, putting his hands down, matching colors, describing actions depicted on cards, all with snot and tears dripping down his face.

Finally, after 45 minutes, he is allowed a break.  He runs out of the room and collapses in my arms, sobbing.

And the therapist has the gall to tell me she has no idea what set him off.  Even though he told her he was tired, he told her his butt hurt, he told her he wanted to see him Mommy.  Even though he completed every task she asked, even though she kept lying to him, promising him a break that would seemingly never come.  And she couldn’t tell me what “set him off.”

Oh, and she also warns me he may have a scratch on his arm from when she was restraining him.  Yes, you read right.  And, sure enough, he has a small, bleeding scratch.  Thankfully a Jake and the Neverland Pirates band-aid is a cure-all.

I tell her the session is over and to please leave.

Our goals have been very explicit with our so-called ABA “team.”  Teach him how to manage his aggression, and teach him how to interact positively with his peers.  How did this session help to reach those goals?  No one can seem to tell me how.

I am so sorry, Big C.  I am so, so, so sorry.

***

So I guess I have learned some valuable lessons so far.  Don’t just assume that if a person is a BCBA (Board-Certified Behavior Analyst) that he or she is necessarily quality material.  Sadly, you sometimes have to learn that truth the hard way.

I would like to end by saying this post isn’t meant to put down ABA therapy.  I certainly hope my experience was merely a bad one and not representative of what ABA therapy should look like.  I’m quite sure there are amazing therapists out there (and I plan to pursue them), but I cannot deny the bitter taste this bad apple has left us with.

 

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.