Monday, November 11, 2013

He's Important

I’m afraid I’m not going to make any friends with this post.  This is kind of what you wind up with when you find writing cathartic and when you’re not the kind of person who sits and has heart-to-hearts with people.  I mean, hey . . . I even have to be near a nervous breakdown before I’ll tell Bill I’m having a difficult time with something.  So, yeah . . . tough day.

I’m having a rough morning, from a “mental health” standpoint (as my co-worker would say).  The day started off pleasantly enough.  I took a shower, chatted with my grandpa, joked around with Joshua, and sang a couple of songs with Owen.  Then, someone ignored a simple request from Owen, and my morning spun into a circle of weepiness.  Admittedly, largely uncalled for, mountain-out-of-a-molehill weepiness, but weepiness nonetheless.  I'm well aware that I'm being unreasonable.  Doesn't really change anything.

These days, there seems to be this stigma attached to autism families who sort of mourn their situation.  “Don’t complain about the life you lead with autism, because it’s like saying there’s something wrong with your child or that autism is something to be ashamed of.”  Hogwash.  I have to deal with autism and all of the other issues that come along with it.  I don't have to like it.  So, I’m going to buck the trend and come right out and say it: I don’t really care for the way that people treat Owen.  Or, maybe it would be more correct to say that I don’t really care for the way that people don’t treat Owen.  Sometimes, I feel like people treat autism like a communicable disease.  You won’t catch it.  I promise.  I rub my face on the kid everyday.  Still not autistic. :)  I try to remind myself that not everyone has the knowledge that Bill, Josh, and I have, so they don’t necessarily know how to act around a person with autism.  That helps for a while, but then I get to thinking that autism is a lot like riding a bike, baking a soufflĂ©, or knitting a sweater: you’re never going to know how to deal with it unless you put forth the effort. 

There seems to be this pervasive belief that autism equals unaware and emotionless.  False.  So very, very false.  It’s proven false in the joy that I see on Owen’s face when he finishes tracing his letters on his worksheets at night.  It’s proven false in the proud giggles that I hear when he reads off 20 sight words without a single error.  It’s proven false in the happy chatter he rattles off when one of the teens from our youth group plays a game with him.  It’s proven false in the sigh I hear when I tell him, “No, sorry, we aren’t going to so-and-so’s house today.”  It’s proven false by the disappointment in his eyes when he has to stay home while Josh gets picked up to go hang out with someone.  People don’t think he knows any better.  He does.

I know autism is hard . . . believe me.  I know it requires massive amounts of patience, understanding, and a specific skill set.  I also know that those things can be learned.  All four-year-olds require patience, understanding, and a specific skill set.  Shoot, all forty-year-olds require those things.  In large part, though, we learned how to deal with autism the same way we learned to deal with nightmares, asthma attacks, and anxiety about not being liked by peers.  How?  By being present.  Not “present” as in “in the general location.”  “Present” as in “engaged, active, and interested.”  Autism aside, Owen is just like any other little boy.  He likes being ticked, wrestling, and being goofy.  He enjoys playing with Lego, going out for ice cream, and running around the park.  He gets excited when we sit down to play a game, lay out a blanket to have a living room picnic, or sing Bible songs.  We’ve spent countless hours on fostering our relationship with him.  That’s really all it takes, just as with any kid.

So, what can you do?  Try.  It’s really that easy.  Don’t ignore him when you walk into the room.  Say “hi” back for the 20th time.  Pick him up, plop him on your lap, and read a book.  Sing a silly song.  Ask him about Team Umizoomi.  Get down on the floor with him and play trains.  Tell him you’d like to hear him say the alphabet.  Anything.  Just make an effort.  Just make him feel important.

Because he is.

Monday, September 30, 2013

What Autism Has Taught Me

It has been sixteen months since Owen got his autism diagnosis.  Sixteen months of therapy, IEP meetings, and re-learning everything we thought we knew about parenting.  Sixteen months of medications, trampolines, and pressure vests to soothe his symptoms.  Sixteen months of climbing to top of the victor’s podium when we defeat a challenge.  Sixteen months of crawling to our feet when autism knocks us to the ground.

What a wild, crazy, joyous, frustrating, hilarious, anger-inducing, celebratory, disheartening ride it has been.  The journey has been confusing and, to be honest, a little bit scary.  Kinda like autism itself.

I have learned a lot of things over the last sixteen months.

Some days, autism wins.  Period.
In dealing with Owen on a day-to-day basis, we’ve sort of taken Mad Eye Moody’s mantra as our own: “Constant vigilance!” (That’s a Harry Potter reference, for the less nerdy among us.)  We address autism from all sides, always looking for new ways to engage him, and we’ve learned a lot about how to handle the majority of Owen’s issues.  We know what environments he just can’t handle (a roller skating rink being at the VERY TOP of that list…we learned that one the hard way).  We know that fifteen minutes on a swing or the aforementioned trampoline will give enough sensory input to his vestibular system to allow his mood to do a complete 180.  Most of the time, we can avoid the triggers and situations that are sure to spark a meltdown.  Some days, however, autism wins.  No amount of therapeutic assistance, soothing tools, or comforting words will suffice.  The world is just too much that day.  And we’re OK with that.  Even the neurotypical among us have “off” days. The key is to be more stubborn than autism is, and come back the next day, determined to make it better than the last.  I won’t lie and pretend that’s easy.  It’s not.  You do it anyway.

Reactions to autism are as numerous as people themselves.
“Autism is just what bad parents use to excuse their child’s behavior.” “He just needs a good spanking.” “I feel so sorry for you.” “He can’t be autistic; he’s too smart.” “I just love Owen.  He’s so awesome.”  I’ve heard all five of those things with my own two ears.  Guess which one I like the most?  You have five guesses.  The first four don’t count. 

Is Owen just being ill-behaved some days, autism notwithstanding?  Absolutely.  He’s still a four-year-old boy, after all.  Do I feel sorry for him (and, let’s be honest, myself) from time to time?  Of course I do.  More often than I care to admit. This stuff is hard.  If it’s this hard on me, I can’t begin to imagine how hard it is on him.  Is he smart?  Heck yes!  Those things aren’t mutually exclusive, ya know?  I try (note, I said “try”…some days I fail - magnificently) to remember that not everyone has the knowledge about autism that our family has gained over the course of the last year and a half, and that causes them not to know how to act.  We have friends and family that have been constantly present in Owen’s life since his diagnosis, taking an active role and learning as much as they can about how to deal with autism and how to respond to his needs.  We have others that have been shockingly absent and seem ill-at-ease in what interactions they do have with him.  Everyone is different.

Little victories are big victories; big victories are huge.
With Owen, we find ourselves celebrating even the simplest of things. The most mundane things.  Little things that most parents take for granted, like asking for a drink or pointing out something interesting.  The first time Owen said, “I’m hungry,” I raced to the phone to call Bill.  When you think about it, “hungry” is a pretty abstract concept.  It’s not like saying, “That shirt is red,” or “The dog is barking.”  It requires a bit more processing than that.  Recently, Owen has started potty training. Talk about a HUGE victory.  We were certain that he’d be quite a bit older before we got anywhere with that because of all of his sensory issues.  He still doesn’t tell us he has to go very often…generally we have to ask, but that’s OK.  And yes, we make a big deal about it whenever he goes, clapping and cheering.  Every. Single. Time.

Your child is the same amazing little person that he/or she was the day before the diagnosis.
Owen still loves trains, chocolate, and his great-grandpa.  He still likes sneaking into Josh’s room, taking off his shoes and socks at inopportune times, and being tickled to the point of hysteria. He’s still goofy, independent, and stubborn.  Autism changes none of that.  The diagnosis has done nothing to squash his sense of humor.  Yesterday, he tripped over his own two feet and fell rear-end first into our storage ottoman.  I didn’t think he’d ever stop laughing.  He didn’t all of a sudden become dependent on mom and dad for everything (quite the opposite…he is fiercely committed to doing things for himself).  He certainly hasn’t become any more laid back.  If you think you’re the parent of the definition of “strong-willed child,” I will pit my kid against yours any day of the week and twice on Sunday.  We’ve just learned that however strong his will may be, we just have to make ours a little bit stronger.

There is absolutely no way to predict what the future will hold.
I distinctly remember the hour-long drive home after Owen received his diagnosis.  I felt defeated, almost torn in half.  Every parent thinks about the future.  Where will my son go to college?  What kind of job will he have?  What will his wife and children be like?  Those questions were immediately replaced with a whole new set of questions.  Will Owen ever be able to be in a mainstream classroom?  Will he be able to function independently, or will he have to live at home forever?  Do we need to make arrangements for him after we’re gone?  Six months after his diagnosis, I honestly have to say that the outlook seemed pretty grim.  Forget thinking about independent living…we couldn’t even go out to eat as a family.  Owen just couldn’t handle it.  A year later, after loads of therapy, iron supplements (that have been literally life-changing for him [and us]…not even kidding), and increased knowledge about autism, we feel like we can say, “Eh, maybe!”  His pediatrician is thrilled with his progress.  We see improvements daily. He’s a bright, happy, active little boy. One year ago, we would never have guessed that we’d be where we are now.  Who knows where we’ll be in another year?

Thursday, August 29, 2013

What Is There To Say?

I like to pretend that I’m a beast.  Like I have it all together.  Like I can handle anything that life throws at me.  Like I’m a superhuman who doesn’t need help.

I’m a fraud, pure and simple.

I haven’t updated this blog in over six months.  That’s ridiculous, to the point of being embarrassing.  I’d like to say that I haven’t had time.  People would probably believe me.  I have a full-time job and a part-time job.  I homeschool one son, and deal with all of the autism-related issues that afflict the other one.  I have a husband who I not only love but also LIKE, so every once in a while, I decide it would be good to talk to him.  I’m fairly active in church.  It sounds like I have no time for anything else.  Sure, I’m busy, but there have been plenty of times that I could have posted an update.  Instead, I’ve chosen to indulge in slothfulness.  In the rare moments that I haven’t really had anything pressing to address, I’ve opted to do nothing.  I’m trying to be better. :) 

The last six months have been filled with blessings.  I got a promotion at work.  Josh became very good friends with the new kids next door.  Our best friends got married.  Owen made huge improvements in terms of speech and cognition.  His preschool decided that his academic ability was so high, he needed to be moved to a blended classroom instead of a dedicated special needs classroom.  He started school on the 14th

 The last six months have also been plagued with numerous difficulties.  I’ve been going through some medical problems and am on a lot of medicine.  Our insurance stated that they would not pay for any more speech therapy for Owen this year, due to a special clause in our contract that they neglected to mention when we asked how many sessions he could have.  He’s only gone without therapy for two weeks, and I can already notice some slight regressions.  We try to keep him engaged at home, but we’re not speech pathologists.  It’s just not the same.

On July 8th, our lives changed dramatically.  Within a half-hour time span, our family learned that my mother-in-law had passed away unexpectedly and that my grandfather – who has taken the most active role of anyone in our lives – had cancer.  Upon learning that Bill’s mother had passed, I left work to head home, be with Bill, and talk to Joshua about what had happened.  I was greeted by my mother, who hesitantly filled me on what was going on with my grandpa.  The world stopped spinning.

I am extremely close to my grandpa.  I was raised by my grandparents, so he has played the role of dad for my entire life.  As much as I loved my grandmother, there is no denying that I am a Papa’s girl through-and-through.  I’m 34 years old, and he still calls to check on me when I’m sick, has me let him know when I’ve made it back home after a trip out of town, and checks the oil in my car.  I was gutted.  I’m not an emotional person in any sense of the word, and I completely lost it…alone in the back yard (well, my mom was there, so I guess not exactly alone).  I didn’t want the kids or my grandpa to see me in my fragile state, and I certainly had to pull it together before Bill got home.  He just lost his mother, after all…it wasn’t my time to grieve.

Over the past few weeks, we’ve learned that grandpa’s situation is likely even more grim than originally thought.  His oncologist believes that the cancer has moved into the lymph nodes elsewhere in his body, not just near the kidney as we originally thought.  He’s also got a large abdominal aortic aneurysm that adds even more difficulty to the situation.  Things don’t look promising.  We have no firm prognosis as of yet, but we do know that we’re not looking at a possibility of a cure.

Pa with his grands, great-grands, and a great-GREAT-grand!

I say all of that to say this…

Papa Sonny (a.k.a “Pa”) is an institution around our house.  As close as I am to him, my children are even closer.  The love they have for him is pure, fierce, and steadfast.  He has been actively present in their lives since the moment they arrived.  He waited anxiously in the waiting room while I labored with Josh, and drove me to my first (unsuccessful) trip to the hospital to have Owen. He has babysat both boys from the moment I went back to work following their births.  On days he doesn’t have to watch them, he’s there to visit them at 4:00 SHARP.  He has accompanied me to every doctor’s appointment the boys have had.  He has nursed Josh through asthma attacks and Owen through terrible bouts of stomach flu.  He’s clapped from the audience at every single Christmas program, walked hand-in-hand to the classroom on every single first day of school, made crafts during every single Grandparent’s Day event, chaperoned every single field trip.

Josh knows that those days are numbered.  We’ve explained to him that this is the time to cherish every moment with his beloved Pa.  Now is not the time for bickering, stubbornness, and petty frustrations.  It’s the time for playing together (while Pa still feels up to it), lots of hugs, and expressions of love.  He’s playing the “tough guy” role, but we know it’s crushing him.  You can hear it in the way his voice deepens when he talks about it.  You can see it in his eyes and the bright red glow that comes to his cheeks when someone asks him about it.  He hates it, but he gets it.

But what about Owen?

For the neurotypical among us, death is so final and concrete.  And it is.  But it also isn’t.  You can’t see it.  You can’t hear it, smell it, taste it, or touch it.  You can feel it, but not with your fingers.  You don’t know the time, the day, or the circumstances.  It’s abstract.  It’s unexpected.  It’s not part of the planned routine.   

How do you explain that the people we love don’t get to be with us forever?  How do you explain the fragility of life and that people as wonderful as his Papa have to go through horrible things like this? How do you explain that the man he has seen literally every day of his entire life will someday not be there? How do you explain that “someday” is coming sooner than we ever thought? 

How do you tell your four-year-old autistic son that his grandpa is dying?

Monday, February 18, 2013

The Going Gets Tough

Today, I noticed that I haven't had a blog post in nearly two weeks. February's been a rough month around our house.  Don't get me wrong...there's always some measure of insanity around the ol' homestead, but these last two weeks have really been tough on all of us.  Here's a glimpse into just one of the many, many things we've been dealing with over the past fortnight:

On February 7th, Owen, Josh, my grandpa, and I made the trek down to St. Louis Children's Hospital.  The trip was by no means an unfamiliar one.  When Josh was but a wee little thing, he had a couple of visits with the neurosurgery department and another with the ophthalmology department.  I have nothing but good things to say about St. Louis Children's.  We have always gotten impeccable care there.  Doctors in tune with the needs of little ones.  Infinitely patient nurses and lab technicians.  The coolest cafeteria I've ever seen.  A fun environment suited for children. Virtually no wait times.  The place is really a master class in children's medical care. On this trip, we were headed down for a second visit to neurology with Owen.

Over the past few months, Owen has been having fairly frequent staring spells.  He'll sort of drift off into the abyss and have a little private party there for about ten seconds or so.  After that, he rejoins the rest of us, with no lasting effects from the episode, nor any memory of anything happening (at least as far as we can tell).  I'm ashamed to admit that I never really noticed anything strange going on with him.  Sure, I knew he kind of "zoned out" from time to time, but who doesn't?  While we were at speech therapy one day, his pathologist (who is BY FAR the kindest, most patient person - let alone medical professional - that I have ever met) noticed one of his spells and expressed her concern that he might be having absence seizures.  It didn't take long for me to notice his spells around the house from time to time.  Concerned, I sent an e-mail to his preschool teacher to ask her to be on the lookout for any strange spells in the classroom.  She e-mailed me back nearly immediately.  Apparently, Owen had been having the same sort of episodes in class nearly every day.  She was extraordinarily apologetic about not having put two and two together before then.  I can't blame her...I didn't either, and I don't have ten special needs toddlers running around my house.

After a consultation with our pediatrician, we were sent to St. Louis Children's back in January to meet with a neurologist there.  It was the most complete examination I've ever seen given.  The doctor spent a full hour with us, looking over every inch of Owen's body and asking every possible question in the world...and I do mean every question.  I present for your consideration, this exchange:

Doctor: "You two (motioning to Bill and me) aren't second cousins or anything like that, are you?"
Me (laughing): "Uh, no."
Doctor: "It happens more often than you might think."

After the exam, we were sent on our way home, with orders to return in two weeks for an EEG to check for seizure activity and instructions to pinch Owen...hard...whenever he had a spell.  The neurologist's belief was that if Owen was just spacing out, he wouldn't be able to ignore pain, so the pinch would jolt him back to reality.  If seizures were truly present, the pinching would have no effect, and we'd have an idea of just what the issue was.

Upon returning home, the "opportunity" to pinch Owen came very quickly.  My parents invited us over for dinner, and Owen had a spell.  Bill leaned over and pinched him.  Owen instantly started crying and said, "What did you do, Daddy?"  My mom came to Owen's defense leaning over and pinching Bill. :)  After that point, every spell went the same way...staring, followed by pinching, followed by renewed alertness.  We were hopeful that this meant that Owen was just having a little "time out" whenever he'd have these spells and that seizures were not present.

When the day for the EEG finally rolled around, I was pretty nervous.  Josh had an EEG when he was five, and I distinctly remember him being very agitated by the time all was said and done.  In case you've never seen an EEG in person, it goes a little something like this:

The technician measures all around the child's head and makes several marks to indicate where the electrodes will be placed.  The technician then goes over each of these marks with a cleanser, so that the electrodes adhere properly.  The electrodes are then attached to the area with an adhesive.  In many cases, the child's head is then bandaged up to prevent the child from tugging at the electrode wires.

By the time Josh had gotten all hooked up for the EEG, he'd had more than enough.  I dreaded going through the same experience with Owen.  With his autism and sensory processing issues, I had no idea what we were in for.  I prepared myself for one very upset child.

I didn't prepare enough.

Owen wasn't upset.  He was hysterical.  He doesn't like to be fiddled with in general, and on the head in particular, so this was especially troubling for him.  After the technician made maybe the second mark on Owen's head, it became apparent that I was going to have to physically restrain him.  It was absolutely brutal.  He screamed.  He thrashed.  He cried.  He pleaded.  Nothing consoled him.  Not toys.  Not games.  Not TV.  Not even Angry Birds, which pretty much cures all of his ills.  He begged for Bill, who was unable to make the trip with us that day.  He begged for his Papa Sonny, who was holding court in the waiting room with Josh.  The technician, bless her heart, was the picture of patience - a true testament to just how relaxed the St. Louis medical professionals are with children.  Indeed, once Owen was finally hooked up to the machine, she said, "That was nothing, Mom.  I've had much, much worse."  I can't imagine much, much worse.  It was easily the most traumatic hour-and-a-half of my life, not to mention Owen's.

Once Owen was all hooked up to the electrodes and had his head bandaged, he grew still, completely exhausted and emotionally defeated.  It was probably the saddest thing I've ever seen.

Poor little boy...I think he'd give up at this point.

The one saving grace of the whole proceeding was that Owen was so tired by the time the prep work was done that he lay perfectly still for the actual test.  He asked the technician to give him a blanket, turn on Sesame Street, and turn off the light. :)  I think if the test had lasted another ten minutes, he probably would have fallen asleep.

When all was said and done, we headed out of the hospital and made the long trek to the sixth floor of the parking garage.  We got him loaded up into the van and headed for home.  By the time I had driven down to the fourth floor, he was sawing some serious logs.  He was really out of sorts for the rest of the day (don't blame was I!!!)

We finally heard back from the neurologist at the end of last week.  There was no discernible seizure activity on the EEG.  Given those results and the fact that he perks up whenever he's pinched during an episode, the doctor feels confident that he isn't having seizures.  He believes that whenever the world gets to be too much for Owen and his autism, he just checks out for a minute.  That's certainly better than the alternative.

Thanks to everyone who's been praying for Owen over the past several months.  Since we first learned of Owen's episodes, our friends, family, and church have been bathing Owen in prayer.  We are so blessed to be surrounded by a community that cares so deeply for our little guy!

Wednesday, February 6, 2013

How to Win Toys and Influence People

Narrator (preferably Morgan Freeman, though James Earl Jones will suffice, if Morgan is busy inventing Bat-toys or something): "On today's episode of Motherhood's Truest Confessions, Danielle tells us why she doesn't like taking her kids to the doctor.  Tune in at 11:00 for all of the sordid details."

There it is, folks - one of my dirty little secrets.  I dread taking my children to the doctor.  It isn't because I don't like (or trust) our pediatrician.  The very opposite is true...I trust his judgment implicitly, and although some people would be put off by a doctor who is forthright and fact-driven, I actually respond well to that.  Beating around the bush gets you nowhere with me.  Let's just put the problem out there so that we can meet it head-on.

No, over the past ten years, appointments with the doctor have left me on edge because we always seem to be hit with something new - allergies, asthma, autism (I'm starting to develop an aversion to the letter A).  We get referred to specialists.  We get orders for testing.  Don't get me wrong...I would MUCH rather address the issue and get everything under control than adopt a "wait and see" attitude.  It can just get a little overwhelming from time to time.  Every once in a while, I just get that whole, "When are we gonna catch a break?" feeling.

I was particularly nervous about taking Owen in for his four-year well-child visit today.  This was his first wellness check since he was diagnosed with autism back in May.  Sure, we've popped in for a couple other things, but it was the first time that he was looked over from head to toe for a physical with our regular pediatrician.  I've been plagued with worry for days...

What if he thinks we're not working hard enough with him?
What if he scoffs at the fact that Owen isn't even CLOSE to potty-trained yet?
What if Owen throws a massive tantrum in the middle of the appointment?
What if, heaven forbid, he discovers yet another thing that might be wrong?

All that worry was - as worry usually is - for naught.

Owen is continuing to grow at a pretty good rate.  Today, he weighs 36 pounds and is 41 inches tall.  According to our doctor's growth chart, that puts him right at about the 50th percentile for both weight and height.  I don't think that's too bad for a child who met the world weighing less than six pounds.

Our pediatrician was very pleased at the progress that Owen has made over the past year.  He actually commented more than once that he can tell I've done a lot of research about autism and that we all have worked very hard to get Owen the best help that is available.  He believes that Owen is much calmer, vastly more verbal, and quite a bit happier than he was at this same point last year.  I suppose I would agree.  It's hard to gauge that sometimes, since we have a much greater understanding of autism than we had several months ago, which enables us to recognize behaviors that we never would have given a second thought to in the past.  So, while Bill and I are inclined to say that we think his autistic traits are more obvious in some ways now, he is also much more acclimated to the world around him, receptive to new situations, and able to deal with sensory overload more easily (either that, or we've learned how to step in and eliminate outside frustrations before he deteriorates into a full-blown meltdown).

Our pediatrician did indicate that he wanted to send Owen over to our hospital laboratory to have his ferritin level checked.  Ferritin is a protein that stores iron and releases it throughout the body.  Low ferritin levels are an indication of a poor supply of iron to the body.  There are some indications that there is a high prevalence of iron deficiency in children with autism and that the difficulties caused by this deficiency can be plentiful.  Iron is necessary for both physical and behavioral functions, so a severe enough iron deficiency may cause cognitive delays, behavioral issues, and a host of other problems.  There are even some studies that have indicated that a lack of iron can lead to Attention Deficit Hyperactivity Disorder (ADHD).  In light of these issues, our doctor felt it important to take a look at Owen's ferritin level.  He instructed us to go ahead and begin giving Owen a multivitamin and DHA daily, and indicated that we would discuss additional treatment, should his ferratin level prove problematic.

Just a hop, skip, and jump later, we were at our hospital's laboratory.  Praise the Lord for small favors...Owen has excellent veins.  My veins are absolutely atrocious, a trait that I've apparently passed down to Joshua.  Thankfully, Owen was spared this hardship (he has enough to deal with, I'd say!)  In an effort to make the situation as trauma-free as possible, I put Owen in his OT vest as soon as we arrived at the hospital.  It worked wonders...until we walked into the lab.

Our phlebotomist (who was approximately 12 years old), had me sit down in the chair and hold Owen on my lap.  When she tied the tourniquet onto his arm, Owen asked, "Are you sick?" (That would be, "Am I sick?" in Owen-ese.)  The phlebotomist said, "Awwww! No, buddy; just a test."  As she approached him with the needle, he immediately began to lose it.  "No, no, no!  It hurts!  No!"  He's only had one blood draw that I can think of, and that was over a year ago.  Somehow, he remembers it.  The phlebotomist started to back up and said, "Awww!  Now I don't want to do it," and looked incredibly sad.  She then tried to get her helper to do it instead (seriously!)  No dice.  When she finally stuck him, he began crying big, fat tears and said, "I'm sorry!"  Apparently, somewhere in Owen's mind, needles are equated with punishment.  Not that I disagree.  The poor phlebotomist was a wreck. I seriously thought she was going to cry for a minute.

We have long had a very special rule in our house...needle sticks - whether for shots, blood draws, finger pricks, whatever - result in a new toy.  All it took was me saying, "Are you ready to go get a new toy?" and Owen's tears slowed immediately.  That in itself is a true testament to Owen's improvement.  Had this happened four months ago, he would still have been having a fit two hours later.  I guess we really have made strides!

He's been eyeballing this computer for was the day (yay, clearance!)

The tradition of needles = toys stems from my own childhood.  Any time I had to have a needle stick, my grandma would do something nice for me.  I'm pretty sure my shots hurt her more than they hurt me!  When I had my physical for college, I got my finger pricked to have my iron checked.  Just a finger prick.  My grandma took me out to dinner, got my hair cut, and bought me a new outfit.  I might have been a little bit spoiled.  Maybe.  I'm not sure.  At any rate, Owen's long-desired toy computer cured whatever ills may have remained from his less-than-stellar blood draw experience.  By the time we got to the car, the entire thing had been forgotten.  If only we, as adults, were so easily contented.  We should all be so ready to look at the good things that we have and move past the bad.

All in all, we had a pretty successful day.  It's nice to hear from an independent source that Owen's improvements are visible.  Sometimes, we feel as though we're just walking on a treadmill.  We walk, and we walk; our breathing grows labored, and our legs grow heavy, but we never seem to get anywhere.  It's good to know that we're apparently moving from the treadmill and out to the sidewalk.  There are so many more things to see out there.

Cue Morgan Freeman:  "Tune in tomorrow, as Danielle tells us how Owen does with his EEG.  Will he sleep through the latter half, like he's supposed to do?  Will he lie still?  Will he have a complete meltdown from dozens of wires being attached to his head?  These answers and more, on the next episode of Motherhood's Truest Confessions."

Monday, February 4, 2013

The Kids Are All Right

Right after Owen was diagnosed with autism, I was overwhelmed with immense feelings of doubt.  Feelings of inadequacy.  Feelings that I'm sure virtually every parent of a special needs child experiences at one time or another (well, shoot...feelings that every parent period probably experiences at some point - kids are hard, man!)

How am I going to do this?
I'm not qualified for this.
Doesn't God know I can't handle this?
Why this?

As so often happens, God - in His infinite wisdom - put people in my path who were able to gift me with messages that I so desperately needed to hear at precisely that moment.   So very many people had words of wisdom, words of comfort, and words of support.  One friend in particular shared with me a story that he had heard about Rich Mullins, one of my very favorite musicians.  As the story goes, Rich's sister had a baby who was born with a birth defect, and as so many parents are, she was devastated and plagued with guilt, blaming herself for what had gone wrong.  Rich told her that he was proud of her, because God sends special needs kids to special parents who are able to give them special love.  A woman I work with said nearly the same thing to me.  When I shared Owen's diagnosis with her, tears immediately came to her eyes.  She looked directly at me and said, "God knows what He's doing.  He knows that you and Bill are just the type of parents that Owen needs right now.  He knows that you will see that he gets absolutely the best care.  If anyone can handle it, you can."

He's a handful, all right! 

A very wise friend (seriously...I want to be just like her when I "grow up") told me that she believes that God not only gives our children to us because He knows the kinds of parents they need, but because He knows the kinds of children we need.  Sure, I do my best, along with my family, to get Owen the help that he so desperately deserves.  That's a no-brainer.  If there's a way to help him navigate through this crazy world that is even more confusing to him than it is to the rest of us, I'm going to do everything in my power to find it.  If there's a way for me to teach him something that will help him grow and mature and function as successfully and independently as possible, I'm going to do my absolute best to work with him.  As far as I'm concerned, though, I've learned so much more from Owen than he will ever learn from me.

I can freely admit, without a moment's hesitation, that my personality doesn't have many redemptive qualities.  I am dreadfully impatient by nature.  I'm not overly compassionate or empathetic (I say this with great shame, but it's use lying to myself about it).  I'm not very good at being flexible and can be pretty "My way or the highway, Buster" about a lot of things.  Those are all highly unflattering characteristics.  They look really ugly written down.

In the door walks autism.  It takes a good, long, hard look at my shortcomings, and it laughs.  Loudly.  From the belly.  "Silly girl," it scoffs.  "Life has never been about you, and it certainly isn't about you now."  It takes my impatience, my self-absorbed nature, and my Type-A personality and tosses them straight out the window.  God has used both autism and this wonderful little person to teach me many, many lessons.  I have no choice but to be patient.  I'm likely never going to see quick results from our hard work, and my frustration only leads to frustration for Owen.  Therefore, I've got to slow down, focus, and take things one step at a time.  I've learned over the past several months that the world simply is not going to be as empathetic and compassionate about Owen as he deserves for it to be.  You would not believe the things we hear during a short trip to Wal-Mart.  As such, I need to be understanding and further develop my compassion, since the world often won't pay him that kindness.  (Unfortunately, my understanding and compassion don't always extend to those rude folks at me.)  Over time, I've also learned that I have to be more pliable and bend to Owen's particular needs at the moment.  Yes, much of Owen's success hinges upon the adherence to a routine, but the simple truth is that sometimes, my best-laid plans just aren't going to work, and I have to come up with a new course of action.  Owen dictates a lot of the routes that we take, as opposed to me.  A year ago, that would have stressed me out to the max.  Now, I understand that it's necessary  for me to adopt a philosophy of flexibility.  No two days are the same, so I've had to learn to adjust to that.

It would be easy to make this blog entirely about Owen.  He's the one who is most directly impacted by autism, but the fact remains that this journey belongs to all of his parents, his brother, his teachers, his therapists, his doctors, his friends, and his extended family.  As much as God knew that we had lessons to learn from Owen, He sent us just what we needed in the form of Joshua as well.

Don't let the picture fool you...he's a handful, too!

As Josh started growing up and developing his own personality, Bill and I wondered to ourselves on numerous occasions, "Where on earth did this child come from?"  I can be paralyzingly introverted around people I don't know.  Put me in a room full of strangers, and I practically curl up into the fetal position.  Once I get to know people, I'm as talkative as the next gal, but it takes me a while to warm up to new folks.  Josh is the polar opposite.  The child has never met a stranger.  It scared me a bit when he was little; I lived in fear that he'd just take off with someone.  However, as he gets older, we see how much of a blessing it is.  Josh lives to make people comfortable.  If we have a visitor at church, Josh is guaranteed to be sitting next to them and carrying out a conversation within about 15 seconds of walking into the room.  He has a genuine love for people, untarnished by the cynicism that can plague so many adult relationships.

Josh adores spending time with the elderly and people with special needs, a trait that existed long before we knew anything about Owen's autism.  It is imperative to Josh that everyone feel loved and important.  That aspect of his personality has exploded since Owen was born.  Josh has always been fiercely loyal toward and protective of his brother (Josh was six when Owen was born, so we expected some jealously...not even the tiniest shred appeared).  After Owen's diagnosis, Josh's loyalty and protection sprouted new blossoms, and he is now Owen's most ardent defender.  He has an understanding of autism and a patience with his brother that belies his years.  I wholeheartedly believe that God knew the situation in which we would find ourselves down the road, so He provided Josh, knowing that he would be just the child that we needed and just the brother that Owen deserved.

When I'm feeling down, I find it therapeutic and extremely helpful to try to stop looking at the hardships and focus on all of the blessings that I have.  My beautiful children are just two of many, many blessings with which I've been bestowed.  It can be very, very (a thousand times very) easy for families affected by autism to look at their situations and become exhausted, exasperated, and defeated.  Heaven knows that I've found myself circling the drain a number of times over the past several months. The key is to look for silver linings amongst the clouds.  They can be extraordinarily hard to see sometimes, and you have to make a concerted effort to look past the rain, but they're there, just waiting to be discovered.  Find your silver lining, my friends.

"And we know that in all things, God works for the good of those who love Him, who have been called according to His purpose." - Romans 8:28

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.