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 immediately...by 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 him...so 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!

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 ages...today 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."

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! 

Photo credit: Melissa Briggs Photography

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 true...no 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 Wal-Mart...trust 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 us...to 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!

Photo credit: Melissa Briggs Photography

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