Thursday, January 31, 2013

The Diagnosis, Part Three

This is the final entry in a series of posts about Owen's diagnosis

By itself, an autism diagnosis is enough to process for one day…too much, really.  Eight months later, and I’m still processing it.  I don’t suppose it’s anything that you ever stop working on understanding.  New strides are being made daily in determining more effective treatments, therapies, and interventions.  Sometimes, when you finally feel like you’re starting to make headway in grasping something, BOOM!  Something new shows up to throw you off your game. J  At the diagnostic clinic, we had been gifted with a medical team that helped us navigate the vast expanse of the sea of autism, but even then, the barrage of information we received in a one-hour period was enough to leave us with our heads spinning.

The team had a variety of recommendations that they passed along to us that day.  Although they had conducted an extremely thorough evaluation, they recommended that we have Owen participate in a separate evaluation to determine if he was eligible for a developmental preschool program.  These types of programs help children like Owen work on their cognitive, linguistic, practical, and social skills.  We are fortunate enough to live in a town large enough to have a developmental preschool nearby, so we were put in contact with them.

The team also recommended outpatient speech and occupational therapy services, in addition to the therapy that Owen would be receiving at his preschool.  His delays in these areas were deemed to be of enough severity to warrant the additional therapy.  The team mentioned that they felt this was of particular importance, since so many of the school-based therapies focus on behaviors that are desirable in a classroom environment as opposed to the atmosphere of home.  There is, of course, some overlap, but the outpatient therapy would also make us active partners in his treatment, enabling us to learn strategies that can assist Owen by making the world less overwhelming for him.

Above all, the team believed that it was of utmost importance for our family to be provided with sufficient information and emotional support to help us understand just how much an autism diagnosis can impact nearly every aspect of everyday life.  I think it’s pretty normal for families who are touched by autism to feel like they’re disconnected and alone sometimes.  During particularly trying periods, Bill and I go through stages when we feel lonely and left out, simply because Owen really can’t tolerate deviations from his routine.  Sometimes a simple trip to the grocery store is too much for him to handle, so we tend to go out in public in shifts.  That’s OK.  Time will help.  He has already improved so much from eight months ago, and every day with autism is different from every other day.  I have a very good friend who has a son with autism herself, and she can recognize when I’m having a bad day without me even saying anything.  She knows where I am along the autism highway, and every once in a while, she drags me into a rest area.  I hope every parent affected by autism can find a friend like that.

Nothing truly prepares you for an autism spectrum diagnosis, even if you believe deep down in your gut that you’re headed in that direction.  Your whole world shifts, and you’re hit with a cornucopia of emotions all at once.  The closest thing I’ve been able to compare it with is being unexpectedly roused from your sleep in the middle of the night.  You’re cozy.  You’re comfortable.  Everything is as it should be.  True, the blanket doesn’t always seem to stretch as far as it should, but you make do.  You can always throw on a pair of socks or toss an extra blanket on the bed.  And, yes, sometimes your husband snores a little too loudly for your liking, but with a swift nudge of your elbow, he rolls over, and unlabored breathing (not to mention, your much-needed peace) gets restored.  On the whole, though, there aren’t many things that can beat being snugly nestled in your spot.  In a stand-up comedy performance, Ben Bailey described it as “perfect comfy.”  All of a sudden, your phone rings, and the safe cocoon you’ve built to surround yourself is quickly decimated.  You’re up, but you’re by no means awake.  You’re confused.  Disoriented.  You can’t see well, you can’t think well, and (if you’re like me), you probably can’t speak in overly coherent sentences.  You don’t even want to know who’s on the line, because the phone rings in the middle of the night for one reason and one reason only.  Before you even pick it up, you know your serenity has likely met its end.

That’s how Owen’s autism diagnosis felt to me.  I am a notorious planner by nature, and this was not part of my plan.  Owen was going to be brilliant, yet funny; talented, yet humble; independent, yet loyal.  I mean, he already had the brilliant and funny down, so we were well on our way. J True, he didn’t speak very well, but he could verbalize well enough to make his needs and wants known.  And, yes, he seemed to tune us out from time to time, but if we kept at him and engaged him more, he would respond.  I could deal with that. My family was everything I ever dreamed it would be.  We were “perfect comfy.”  Then, all of a sudden, every dream I had built up turned on a dime.  I knew what autism was, but I didn’t really know autism.  I was lost.  Questions swirled like tornadoes in my head, and yet I couldn’t formulate one single question.  I was afraid to even read the diagnosis papers and treatment recommendations for fear of what was waiting for us on the other side.  I knew immediately that our lives would never be the same.  I was too overwhelmed at the time to understand that even with a spectrum disorder, over time Owen can still be brilliant, funny, talented, humble, independent, loyal, athletic, artistic, compassionate, energetic, patient, loving, and a whole host of other adjectives.  Ultimately, I’m just trying to raise a little boy who will grow up to be a good man.  In that regard, the destination is the same.  We’re just going to have to take a different route - and a few more pit stops - to get there.

Tuesday, January 29, 2013

The Diagnosis, Part Two

This is the second in a series of posts about Owen's diagnosis

Though our minds were already reeling, it turned out that the medical team wasn’t quite finished with us.  In addition to classic autism (as if that wasn’t enough to process for one day), Owen was diagnosed with a number of other issues:

·         Generalized delays in the areas of speech/language, motor, and cognition (OK, clear enough, and not a surprise)
·         Sensory processing disorder (SPD): a person’s nervous system receives a variety of messages from the senses and turns these messages into motor and behavioral responses.  When an individual has SPD, the messages aren’t organized appropriately (or what is conventionally thought of as “appropriately”), and the individual can have a host of issues, such as clumsiness, hypersensitivity to smells and sounds, anxiety, etc.
·         Feeding concerns (due in large part to the SPD): at the time of his testing, Owen had real issues with food texture.  No one texture in particular was troublesome to him; it was the combination of textures that caused the problem.  For example, he could eat bananas just fine, and he could eat potato chips just fine.  However, if he had just eaten six bites of banana and then tried to eat a chip, he’d gag.  His gag reflex was seriously overactive.
·         Hypotonia:  Owen has low muscle tone – a fact that’s been confirmed by a number of medical professionals.  Every doctor and therapist who has had any contact with him since his diagnosis has mentioned it. His joints are hyperflexible (wish mine were), and he’s kind of “floppy.”  I honestly can’t think of a better word to describe it. It’s particularly noticeable when he runs.  He just sort of flails about, limbs flying in all directions, and then the completion of the run is usually punctuated with a face-plant. Interestingly enough, his low tone is in stark contrast to his ridiculous strength.  At about eighteen months of age, he was sitting in the cart at the grocery store, reached behind him, lifted a gallon of milk from the basket with one hand, and set it in his lap.  I asked a therapist about this apparent contradiction some time ago, and she indicated that there’s a difference between neurological muscle tone and physical muscle tone.  His physical tone is top notch; his brain just doesn’t always send the right message to his muscles.

As shocking as some of these issues were, they were nothing compared to his overall development profile.  The therapists and doctor had rated Owen on a number of factors throughout the day and assigned an age equivalence rating based upon Owen’s command of each area.  Owen was three years and four months old when he had his testing.  Based upon his performance throughout the day, the medical team determined that he was a couple of months ahead of the curve as far as letter recognition was concerned.  I could’ve told you that, I thought.  He knows even more than he showed you…all of the testing was just getting on his nerves, so he was being uncooperative.

Owen’s “typical” performance ended there.  In the areas of self-help, gross motor skills, fine motor skills, expressive language, language comprehension, and general development, he had an age equivalence between two and two-and-a-half years old.  He had a delay somewhere between 25 and 30 percent in each of these areas.  The team was concerned, to say the least, but not nearly as concerned as they were about the final area of testing.  In the arena of social skills, Owen’s age equivalence was twenty months.  Twenty months.  I did the math in my head.  Three years and four months old.  That’s forty months.  Owen had the social skills of a child half his age.  I was stunned.  I was shaken.  I was emphatic that they were misinformed.  Denial is not just a river in Egypt, my friends.

Half his age?  I don’t know about that.  I mean, I’m not sure your basis for coming up with that estimate is really legitimate.  He’s just a little boy, and you’ve been putting him through the wringer all morning, so he’s tired and frustrated and simply doesn’t feel like socializing all that much.  I wouldn’t either.  I’d just want to be left alone, too.  Not only that, he didn’t have a lot of opportunities to socialize with others anyway.  Seriously…he spent all morning alone with doctors and therapists that he’d never even met before.  Do you really expect him to thoroughly engage with complete strangers?  You didn’t give my husband and I an opportunity to play with him.  He loves being goofy with us.  His older brother has been right in the next room all this time, and never once did you call him in so that you could see the two of them together.  Talk about crazy play and socialization when they’ve teamed up, believe me!  Do you really think you’re being fair?  I don’t see how you can possibly make that kind of decision without considering other scenarios.

I said all of those things.  Loudly.  Enthusiastically.  Passionately.

In my head.

Monday, January 28, 2013

The Diagnosis, Part One

This is the first in a series of posts related to Owen's diagnosis.

Although Owen’s diagnosis on that fateful day in May simply confirmed fears that I already felt were pretty well-founded, I was fairly shocked at just where the consulting physicians believed that Owen fell along the autism spectrum.

For the uninitiated among us, at the time of Owen’s diagnosis, there were five disorders that were classified as being on the spectrum:
·         Classic autism
·         Asperger syndrome (which has since been re-classified; Asperger’s is no longer considered its own disorder, but has rather been lumped into the more general “autism spectrum disorder” classification)
·         Childhood disintegrative disorder
·         Rett’s syndrome
·         Pervasive developmental disorder not otherwise specified (PDD-NOS)

If I had been forced to guess, I would have lumped Owen into the PDD-NOS group. Although he definitely had some obvious delays, I didn’t think his social issues were as profound as they typically are in children with classic autism or Asperger’s (or what I thought at the time was "typical" of either of those disorders; I now know that every case is wildly different from every other case).  Rett’s syndrome is almost exclusively seen in girls, and Owen did not have the significant physical issues that go along with Rett’s in any case.  He also hadn’t experienced regression, the hallmark of childhood disintegrative disorder.  Children with that particular disorder typically develop normally for the first few years, and then they lose the language, social, and motor skills (among others) that they had previously developed.  That left PDD-NOS. Generally, children with PDD-NOS have developmental delays and issues with communication and play, and while they do have some difficulty in their interactions with others, they’re generally too social to consider to be autistic.

Gasp!  I said the word “autistic.”  Embracing my own ability to become easily distracted from the issue at hand and commencing mini-rant in 3…2…1…

I’ve learned a number of things during the eight months that we’ve all been trying to adjust to our “new normal.”  Some parents blame vaccines (I don’t).  Some parents sing the praises of special diets (we tried it; it’s not for us).  Some parents are offended by use of the word “autistic,” since it puts a label on the child.  Instead of saying that the child “is autistic,” these parents prefer to say that the child “has autism.”  Is autistic.  Has autism.  Sounds about the same to me.  I’m far too concerned with helping Owen understand the world (and helping the world understand him) to get too caught up in the description.  You know what offends me?  Ignorance, not semantics.  Say it either way you want - doesn’t bother me.  Truth be told, I’d say that “Owen is autistic” is probably more accurate than “Owen has autism,” at least as far as our personal situation is concerned.  A person has a cold.  A person has a stomachache.  They are momentary afflictions, meant to be addressed and moved past.  Owen is autistic.  It’s not something to be ashamed of, it’s not something to treat willy-nilly, and it’s not something he’ll magically appear cured of one day (barring a touch from God).  It’s something that he, we, and everyone who loves him will have to deal with and address every single day for the rest of his life, and that’s OK.  It’s not wrong.  It’s not unnatural.  It just is.

Rant completed…where was I?

When the developmental physician handed me the paperwork that indicated that he and his colleagues were diagnosing Owen with classic autism, I was floored.  Not because I wasn’t expecting a spectrum diagnosis.  I was fully prepared for that.  I just wasn’t prepared for that one.

Friday, January 25, 2013

Don't Compare Your Children

You hear it from the moment you learn that you’re pregnant with your second child.  You hear it from friends who’ve already been down the more-than-one-kid path. You hear it from child-rearing books.  You hear it from your mom.  You hear it from that little voice that whispers truth to you from the back of your mind.

Don’t compare your children.

You hear it.  You try your hardest to listen. You fail.  Miserably.  Well, you know what I say?  That’s OK.

Practically from their moments of conception, my two children could not possibly have been any different from one another.  In 2002, on our first anniversary, Bill and I learned that our first child was on the way.  Though not high risk, and certainly not as difficult as it could have been, the pregnancy was by no means easy on me.  I had severe morning (and afternoon…and night) sickness for nearly eight months.  By the end of the third month, I had lost twenty pounds.  I was an emotional train wreck, which was a difficult row for someone who is a self-described “robot” to hoe.  Virtually every hour that wasn’t spent working, throwing up, or crying was spent sleeping.  I was a mess.  I hated every minute of being pregnant.  Every minute.  Isn’t that a terrible thing to say?

During a snowstorm on Christmas Eve, two weeks past my due date, after an extremely intense twelve hours of labor (starting with the very first one, my contractions were only a minute apart), I was left with the most beautiful little creature I had ever seen…all six pounds, nine ounces of him.  As soon as we found out we were expecting a boy, we decided upon the name Joshua.  It fit him perfectly.

Josh (about nine months) with my dad (a little more than nine months)

The first six years of Josh’s life were medically tumultuous, to say the least.  Immediately after birth, he had a fever, and his pediatrician was concerned at the “perfect roundness” of his head.  After a head ultrasound and ten days of antibiotics, he was deemed healthy and released to finally join us at home. 

By the time Joshua was two years old, he’d seen a neurosurgeon, a geneticist, a cardiologist, an endocrinologist, a gastroenterologist, a physical therapist, a dietician, and an ENT (an ear, nose, and throat specialist…not a tree-like creature from Middle Earth; as cool as that might have been, I’m pretty sure it wouldn’t have told us anything). Doctors checked him for a variety of conditions: craniosynostosis, osteogenesis imperfecta, a hole in his heart, cystic fibrosis, celiac disease, and more that I can’t even remember.  Aside from needing physical therapy for a muscle condition in his neck and tubes in his ears, no tests ever indicated that he needed any treatment.  The general consensus seemed to be, “We think something’s wrong with him; we just don’t know what.”

In kindergarten, we got a scary surprise in the form of Josh’s first asthma attack.  It was followed by a more severe attack a few months later that landed him in the hospital for three days.  Doctors finally determined that the asthma attack was brought on by a severe allergy to dogs and exacerbated by undiagnosed bacterial pneumonia, so they gave him antibiotics to treat the pneumonia.  He had a massive allergic reaction. After yet another visit to the hospital and a switch in medicine, we got him back on the right track. Thankfully, though his asthma and allergies still plague him from time to time, his medical issues have slowed way down.

Fast forward to 2008.  After purchasing our first home, and after many, MANY requests from Josh, Bill and I decided the time was right to have another baby.  Given my less-than-desirable experience with my first pregnancy, I had been in no hurry to try all of that again.  However, that spring, we learned that we’d been gifted with another blessing.  Josh wasn’t going to get the sister he had requested, but he was OK with that.  He enthusiastically requested that we name the baby Anakin, since he was on a gigantic Star Wars kick at the time.  As much as we hated to disappoint him, we politely declined.

The pregnancy was an absolute dream.  I had not a minute of morning sickness.  Not one.  My hormones and emotions were completely in check.  I had more energy than I had when I wasn’t pregnant.  The only pregnancy symptom I had was an insatiable craving for fries.  I actually enjoyed being pregnant.

During a snow storm on Martin Luther King, Jr. Day, three days before my due date, after an extremely easy 45 hours of labor (yes, you read that correctly), I was left with another angel…all five pounds, fourteen ounces of him (I seriously had beautiful newborns…stunningly beautiful).  We had settled on the name Owen.  Good choice.  He looked like an Owen.  Plus, it pacified Josh, once we reminded him that Luke Skywalker’s uncle’s name was Owen. 

Owen (a whopping two hours old)

Aside from a battle with RSV when he was eight weeks old, as well as some trouble with eczema (which, sadly, both Josh and Owen have inherited from me), Owen was remarkably healthy.  Shockingly healthy.  I didn’t know what to do with a baby that I didn’t have to cart around to every specialist within a 150 mile radius.  I was relieved not to have to take him to the doctor every two weeks just to have his weight checked.  He grew and thrived…he was even chubby!  Josh had never had so much as a lick of fat on him.  I distinctly remember going to Owen’s one year checkup and having the doctor say, “I’m glad you can see how I am when it comes to treating a more ‘normally’ developing child.”  Truthfully, I didn’t know whether to be offended or relieved.  I guess I was a little of both if I still remember it after all this time.  I just couldn’t believe how very different our second experience had been.  Nothing was the same.

Don’t compare your children.

Owen met most of his milestones at basically the same time that Josh had met his.  They rolled, crawled, stood, and walked at virtually the same time.  However, when Owen was about 18 months old, I became concerned that he wasn’t talking nearly as much as Josh had at that age.  I knew that it was a difficult comparison to make, because Josh has always been wildly verbose (to put it respectfully).  I kept trying to convince myself that he just didn’t need to talk that much, because Josh was doing all of his talking for him.  No matter how hard I tried, though, I just couldn’t shake the concern.  At Owen’s 18 month checkup, I brought up the subject with our pediatrician.  He made the magical comment.

Don’t compare your children.

The doctor told me that Josh spoke more than virtually any child that he knew at that age, so comparing them was fruitless.  He asked if Owen could say a dozen words.  I confirmed that he could, and that he could also name all of his colors and shapes, as well as most letters and numbers (something Josh hadn’t come close to being able to accomplish at that age).  The doctor talked me down from my worries, convinced that Owen was fine...maybe even advanced.

At around two, Owen started walking on his tiptoes.  WAY up on his tiptoes.  We’re talking ballerina en pointe style.  I had no idea how he could possibly maintain his balance walking like that, let alone how he didn’t exhaust himself. My calves would have been on fire. Walk on those tiptoes he did, though.  I brought that up to the doctor also, but after a physical exam, he believed that Owen’s toe-walking was more the product of habit and some tight ligaments than anything else.

Don’t compare your children.

Owen continued to grow and thrive, but he grew distant.  He never really looked people in the eye.  He didn’t play with kids his own age.  However, as someone who has battled looking people in the eye for her entire life, and being an introvert myself, that didn’t really resonate with me.  At his three year well-child check, the doctor commented that Owen wasn’t really engaging with him during the exam.  He started in with a barrage of questions: “Does he play with other kids?  Is he loving?  How have his speech and toe-walking gotten?”  After about ten questions, I just blurted out, “I know what you’re getting at.  You can say it.”  One of my absolute favorite things about our pediatrician is that he is direct, and I’ve always responded in kind. He doesn’t beat around the bush, but that day, he was treading very lightly. That was when the possibility of Owen having autism was first addressed.  Though we wouldn’t have an official diagnosis for another four months, I suppose I really knew that day.

Don’t compare your children.

These days, Josh has developed into a relatively healthy, growing ten-year-old.  He’s even a little bit pudgy around the middle.  He hasn’t been to the doctor for an appointment other than a standard checkup in over two years.  My sickly little boy has grown and adapted into a healthy big kid.  My darling Owen, who – up until his third birthday – virtually never went to the doctor for anything other than a physical, now spends a large portion of his life at appointments with doctors and therapists.  I keep thinking that perhaps if I’d been more vigilant – if I’d trusted my gut in some areas and opened my eyes wider in others – we may have been able to address his issues sooner, which could have only been to his benefit.  I think I spent so much time trying to adopt that age-old adage that I failed my child somehow.

Don’t compare your children.

I’m gonna say that it’s just not that simple. Go ahead and compare them a little.  That’s why benchmarks exist…so you can know when something’s not quite right.

Thursday, January 24, 2013

Five Simple Words

I remember the waiting more than anything.  If for no other reason, I can recall virtually every moment simply because I felt exactly the same way the one time I got called to the principal's office in high school.  I felt anxious...dejected...defensive.  As my husband Bill and I sat on one side of the long, formal, highly-polished wooden conference table, I counted the seconds along with the clock that was ticking ever so loudly from the other side of the room.

Tick.  What if it's true?

Tock. We'll learn to deal with it.
Tick.  At least we have friends in the same boat.
Tock. It might be a totally different boat.  There might not even be a boat.
Tick.  Let's hope not.  I'm afraid of boats.

"I wish they'd get on with it," I told Bill, not that I really wanted to hear what they had to say.  Tom Petty's right, though...the waiting is the hardest part.

Bill and I had just spent the entire morning ushering our youngest son, Owen, through appointments with a cadre of medical professionals armed with a battery of tests.  In just under four hours, we'd seen a speech therapist, an occupational therapist, an imaginative play specialist, and a developmental physician.  Owen had been poked, prodded, measured, and tested until he was at the end of his rapidly-fraying rope.  Bill and I had been quizzed, questioned, and interviewed to the point of exhaustion.  After a much-needed (but all-too-short) lunch break, we had been called back to discuss the results of the morning's proceedings.

As the small army of professionals entered the room, I felt my chest tighten.  My heart was absolutely racing, and my breath quickened to the point that I was nearly hyperventilating.  Deep in my gut, I knew what they were going to tell us.  A mom always knows.  I'd spent the last three-and-a-half years watching nearly every move that Owen had made, trying to convince myself that there was an explanation for everything.

He doesn't talk much because his brother does all of his talking for him.

He walks on his tiptoes because he's curious and wants a better look at the world.
He doesn't respond to requests or commands because he's a bull-headed three-year-old boy.
He doesn't like to be cuddled because he's fiercely independent (just like me!)

As the doctor and therapists settled themselves in their seats on the opposite side of the table, they smiled at us with the unmistakable look of concern and understanding in their eyes.  Inside, I silently willed them not to speak.  No, don't say anything.  You know what?  I was wrong.  Waiting's not so bad.  We'll just take Owen home and work with him a little more.  Maybe we've just been lax in our care.  How about we come back in a few months and try this again?  It'll be better, then; you'll see.  Somehow, even though my heart was absolutely screaming, they didn't hear me.  Instead, the doctor slid a piece of paper to me from across the table and said the words I'd been dreading for months.  The words that seemed to shatter every expectation I had built for my son. The five words that changed our world: "We believe Owen has autism."

My heart hit the floor.