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.

SensoryBlogHopNew

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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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.

 

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?

keyboard-114439_1280


~Chaos Contemplated (for now)

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