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In 1908, the term was created by Eugen Bleuler to describe his withdrawn schizophrenic patients.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

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Autism Still Lives Here

Autism still lives here.

I want it to leave.

I’ve tried taming it, coaxing it, encouraging it to move on. For awhile now, I thought it listened. So sure was I that it had vacated the premises, I made comments like, “I’m not so sure he even has autism,” and “Was the diagnosis even correct?” These comments, more often than not, have been met with sympathetic looks or avoidance of eye contact altogether, making me more angry and determined to boot Autism the hell out.

Those of you who have housed Autism for years probably think I’m ridiculous. How could I believe that Autism would simply go away?

Denial.

But I’m coming ’round.

Two years ago, when we received the formal declaration that Autism was making itself a permanent resident in our home, I did everything I could to make it comfortable. Hours of research, reading, phone calls, therapy sessions, doctor’s visits, and social skills classes ensured we could co-exist.

We got used to, even comfortable with, each other. I found myself forgetting Autism was around. I stopped giving it attention. Books got dusty, testing stopped, therapies started to wane, my writing came to an abrupt halt.

No one likes to be ignored.

Autism began following me. It would whisper in my ear at night, sometimes slipping casually into conversation with acquaintances and co-workers. It would manifest itself in my students, or appear on TV. It would proclaim itself loudly in the words of therapists and teachers and principals. It would blindside me in books read purposefully for escape. It defied my denial; it demanded my awe.

Autism still lives here. It reminds me of it constantly.

Autism likes to argue with me, rigidly refusing when it feels I have lied.

Autism likes to scream and hit and sometimes bite.

Autism doesn’t like to look me in the eye.

Autism likes to confuse my son, making it nearly impossible for him to understand his peers.

Autism likes to make my son feel overwhelmed, causing him to swing his arms and bump into walls.

Autism likes to make my son feel clumsy when he can’t catch a ball.

Autism like to make my son feel stupid when he can’t get things right the first time.

Autism makes my son cry.

I hate autism.

“Mommy, we don’t say hate.”

“Sorry, honey.”

Autism.

If I say the word enough, will it lose some of its power?

Autism, Autism, Autism.

We never know the words we will collect along the way, the ones which will forever reside within us. Autism is one of mine. I’m sure you carry your own.

Autism: 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.

Autism: a resident in my five year-old’s mind.

Autism still lives there.

And I am still adjusting.

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Public Domain Photo

This post also appears on Sammiches and Psych Meds.


 

 

 

 

 

ASD, SPD, WTF?

I’ve been grappling with something.

Does my four year-old son really have autism?

It’s not an easy question to answer. The umbrella seems rather wide, and my son has just squeaked his way under it. He can’t always find protection from the rain; part of him is perpetually sticking out.

There are moments when his imaginative play is creative and his language so articulate, I find myself scoffing at the diagnosis.

Then he licks the restaurant table.

There are moments when he shows intense empathy for his younger brother, and a true desire to play with him.

Then he knocks him off the couch.

There are moments when he gets so excited about a play date with a friend, he’s literally jumping up and down.

Then he spends the time playing by himself.

Just a few days ago, he was snuggled next to me on the couch watching TV. Then, suddenly, he was jumping on me, clawing and biting.

What is this?

Is it autism? Is it sensory-processing disorder? Is he simply an active aggressive child?

Does it matter?

Yes….and no.

Yes, it matters in that the label of ASD has provided us with therapies to help our son that insurance wouldn’t otherwise cover, as well as the opportunity to participate in programs that require a label to attend. It’s provided our son with an IEP that has been instrumental in bridging the communication between home and school. It’s allowed him to participate in a special needs preschool with a teacher that truly changed his life for the better. It’s providing us with a solid plan for when he starts Junior Kindergarten this fall, to ensure he has the best start possible.

Yet, I still find myself struggling with the label, wondering if it truly depicts my son. In my heart, I know it doesn’t. This label of autism felt all-consuming when it was slapped on him last year, but now, it feels like such a small part of who he really is.

Impulsive, creative, active, intense, aggressive, sensitive, funny, sensory-seeking, compassionate, competitive, energetic, autistic — these are just some of the words that describe my son.

For now though, I’ll take the label.

Do you ever struggle with your child’s diagnosis?

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Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month’s Sensory Blog Hop? Click here!


The Anniversary of a Diagnosis

A year ago, I received

a diagnosis,

a slap in the face,

a validation.

No mother wants to admit she feels a slight twinge of relief at hearing something is “wrong” with her child.

But I did.  A small, small part of me thought, So it’s not me.  I’m not a horrible mother.  I have a difficult child.  It isn’t this hard for every mother.

Feelings are feelings.  What can I say?

Of course, those thoughts were immediately bulldozed by feelings of deep sadness, fear, and shame. Sadness for my three-year old son who had to deal with these struggles, fear these struggles would overwhelm and consume him, and deep shame that I felt that earlier twinge of validation.

What’s also surprising about receiving a diagnosis is that, on the surface, nothing changes.  After our initial meeting with the doctor, we went about our day.  There wasn’t an immediate transformation or quick fix.  In fact, pinpointing a diagnosis our insurance company could accept took months.  Any change my son actually felt (in the way of therapies, special needs preschool, and the implementation of an IEP) was months down the line.

But for me, the change was immediate.

In an instant, I was told there was a name for my frustrations, for my son’s frustrations.

Autism.

I didn’t truly understand what the word meant beyond the stereotypes, but I knew in that moment, this word and I would come to know each other on a visceral level.

And we have.

Autism is feisty.  It refuses to pin itself down to just one definition.  Some days, I question whether autism really belongs in the list of terms to define my son. Then it slaps me in the face, boldly reminding me it is a term that defies boundaries.  I don’t know I’ll ever be able to provide it a proper definition.

While autism may be an intriguing word, I’ve also learned it’s just one of many words to describe my oldest son. It has some fierce competition with intelligence, strength, and passion. 

A year ago, I received

word,

an insight,

an understanding.

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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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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

 

 

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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