tag:blogger.com,1999:blog-46398316509849529822024-02-19T04:12:41.649-06:00When Owen Speaks, We ListenDaniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-4639831650984952982.post-55960931352991320432013-11-11T11:46:00.001-06:002013-11-11T11:46:52.599-06:00He's Important<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 <i>don’t</i> 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 soufflé, or knitting a sweater: you’re never going to know how to deal
with it unless you put forth the effort. <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. <i>All</i> 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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 <i>Team Umizoomi</i>. 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. <o:p></o:p></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;">Because he is.</span><br />
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<o:p></o:p></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-87136508760843725452013-09-30T22:52:00.000-05:002013-09-30T22:52:05.128-05:00What Autism Has Taught Me<div align="left" class="MsoNormal">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I have learned a lot of
things over the last sixteen months.</span></div>
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Some days, autism wins. Period.</span></b></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <i>Harry
Potter </i>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.</span></div>
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Reactions to autism are as numerous as people themselves.</span></b></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“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. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. <a href="http://www.blogger.com/blogger.g?blogID=4639831650984952982" name="_GoBack"></a>Everyone is different.</span></div>
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Little victories are big victories; big victories are huge.</span></b></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <i>tell</i> 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.</span></div>
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Your child is the same amazing little person that he/or she was the day
before the diagnosis.</span></b></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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
<i>fiercely</i> 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. </span></div>
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<b><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is absolutely no way to predict what the future will hold.</span></b></div>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">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?</span>Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-57255390791639376642013-08-29T12:42:00.000-05:002013-08-29T14:15:21.952-05:00What Is There To Say?<div align="left" class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I’m a fraud, pure and
simple.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. :) <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 14<sup>th</sup>. <o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtYsQgkFhzNUj1oKpyEX8IWUXbPMv7589egyWUc9lVmcmv_N5rxq3igx59h0grhnUVkJKDnNAL-ang_nAuBmtzhJCNn9ObTa8dMxyU_ewC0goZOIWlVWKIWMGT628uuwatScZoAK6vQaJ5/s1600/Owen+PreK4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtYsQgkFhzNUj1oKpyEX8IWUXbPMv7589egyWUc9lVmcmv_N5rxq3igx59h0grhnUVkJKDnNAL-ang_nAuBmtzhJCNn9ObTa8dMxyU_ewC0goZOIWlVWKIWMGT628uuwatScZoAK6vQaJ5/s400/Owen+PreK4.jpg" width="400" /></a></div>
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<o:p><span style="font-family: Georgia, Times New Roman, serif;"> </span></o:p><span style="font-family: Georgia, 'Times New Roman', serif;">The last six months have
also been plagued with numerous difficulties.</span><span style="font-family: Georgia, 'Times New Roman', serif;">
</span><span style="font-family: Georgia, 'Times New Roman', serif;">I’ve been going through some medical problems and am on a lot of
medicine.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">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.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">He’s only gone
without therapy for two weeks, and I can already notice some slight
regressions.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> </span><span style="font-family: Georgia, 'Times New Roman', serif;">We try to keep him engaged
at home, but we’re not speech pathologists.</span><span style="font-family: Georgia, 'Times New Roman', serif;">
</span><span style="font-family: Georgia, 'Times New Roman', serif;">It’s just not the same.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">On July 8<sup>th</sup>,
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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I am <i>extremely</i> 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 <i>exactly</i> 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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQ70eCbMxFf82I3V5LZ9UVDtcOfhlftwym-BzVD9PCeECMImUKKHqSkUPmL6DBdp0n17WHW3bBSrJ-fPEb1kqGvX-BV3JH5v_r1Gtkz9_y63zW7vpSm5DkLYv3QoHOj2vtXJz_hPQlDJa/s1600/Pa+and+Grands.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQ70eCbMxFf82I3V5LZ9UVDtcOfhlftwym-BzVD9PCeECMImUKKHqSkUPmL6DBdp0n17WHW3bBSrJ-fPEb1kqGvX-BV3JH5v_r1Gtkz9_y63zW7vpSm5DkLYv3QoHOj2vtXJz_hPQlDJa/s400/Pa+and+Grands.jpg" width="400" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Pa with his grands, great-grands, and a great-GREAT-grand!</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I say all of that to say
this…<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br />
But what about Owen? <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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. <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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? <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">How do you tell your
four-year-old autistic son that his grandpa is dying?</span><o:p></o:p></div>
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<span style="font-size: xx-small;">Photo credit: <a href="https://www.facebook.com/melissabriggsphotography" target="_blank">Melissa Briggs Photography</a></span></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-16177114992969990532013-02-18T16:17:00.000-06:002013-02-18T16:17:56.717-06:00The Going Gets Tough<span style="font-family: Georgia, "Times New Roman", serif;">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 <em>just one</em> of the many, many things we've been dealing with over the past fortnight:</span><br />
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<span style="font-family: Georgia;">On February 7th, Owen, Josh, my grandpa, and I made the trek down to <a href="http://www.stlouischildrens.org/" target="_blank">St. Louis Children's Hospital</a>. 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.</span><br />
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<span style="font-family: Georgia;">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 <em>ever</em> met) noticed one of his spells and expressed her concern that he might be having <a href="http://absence%20seizures/" target="_blank">absence seizures</a>. 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.</span><br />
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<span style="font-family: Georgia;">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:</span><br />
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<span style="font-family: Georgia;">Doctor: "You two (motioning to Bill and me) aren't second cousins or anything like that, are you?"</span><br />
<span style="font-family: Georgia;">Me (laughing): "Uh, no."</span><br />
<span style="font-family: Georgia;">Doctor: "It happens more often than you might think."</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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. :) </span><span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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:</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">By the time Josh had gotten all hooked up for the EEG, he'd had <em>more</em> 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.</span><br />
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<span style="font-family: Georgia;">I didn't prepare enough.</span><br />
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<span style="font-family: Georgia;">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 <em>Angry Birds</em>, 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.</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia; font-size: xx-small;">Poor little boy...I think he'd give up at this point.</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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.</span></div>
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<span style="font-family: Georgia;">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!!!)</span></div>
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<span style="font-family: Georgia;">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.</span></div>
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<span style="font-family: Georgia;">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!</span></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-47567498173021842242013-02-06T16:39:00.001-06:002013-02-06T16:42:31.020-06:00How to Win Toys and Influence People<span style="font-family: Georgia, "Times New Roman", serif;"><u>Narrator (preferably Morgan Freeman, though James Earl Jones will suffice, if Morgan is busy inventing Bat-toys or something):</u><em> </em>"On today's episode of <em>Motherhood's Truest Confessions</em>, 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."</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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...</span><br />
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<em><span style="font-family: Georgia;">What if he thinks we're not working hard enough with him?</span></em><br />
<em><span style="font-family: Georgia;">What if he scoffs at the fact that Owen isn't even CLOSE to potty-trained yet?</span></em><br />
<em><span style="font-family: Georgia;">What if Owen throws a massive tantrum in the middle of the appointment?</span></em><br />
<em><span style="font-family: Georgia;">What if, heaven forbid, he discovers yet <u>another</u> thing that might be wrong?</span></em><br />
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<span style="font-family: Georgia;">All that worry was - as worry usually is - for naught.</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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).</span><br />
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<span style="font-family: Georgia;">Our pediatrician did indicate that he wanted to send Owen over to our hospital laboratory to have his ferritin level checked. <a href="http://www.nlm.nih.gov/medlineplus/ency/article/003490.htm" target="_blank">Ferritin</a> 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 <a href="http://www.ont-autism.uoguelph.ca/Micronutrients-June08.pdf" target="_blank">the difficulties caused by this deficiency can be plentiful</a>. 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.</span><br />
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<span style="font-family: Georgia;">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 <a href="http://www.otvest.com/" target="_blank">OT vest</a> as soon as we arrived at the hospital. It worked wonders...until we walked into the lab.</span><br />
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<span style="font-family: Georgia;">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.</span><br />
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<span style="font-family: Georgia;">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!</span><br />
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<span style="font-size: xx-small;">He's been eyeballing this computer for ages...today was the day (yay, clearance!)</span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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 <em>might</em> 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.</span></div>
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<span style="font-family: Georgia;">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.</span></div>
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<span style="font-family: Georgia;"><u>Cue Morgan Freeman:</u> "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 <em>Motherhood's Truest Confessions</em>."</span></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-56085786617868475172013-02-04T12:54:00.000-06:002013-02-04T12:54:49.142-06:00The Kids Are All Right<span style="font-family: Georgia, Times New Roman, serif;">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 <i>period</i> probably experiences at some point - kids are <i>hard</i>, man!)</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><i>How am I going to do this?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>I'm not qualified for this.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Doesn't God know I can't handle this?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Why this?</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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."</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">He's a handful, all right! </span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: xx-small;">Photo credit: <a href="http://www.facebook.com/melissabriggsphotography?fref=ts" target="_blank">Melissa Briggs Photography</a></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 <i>they </i>need, but because He knows the kinds of children <i>we</i> 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.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 <i>but</i> 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 <i>believe</i> 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.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span><span style="font-family: Georgia, Times New Roman, serif;">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.</span><br />
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<span style="font-size: xx-small;">Don't let the picture fool you...he's a handful, too!</span></div>
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<span style="font-size: xx-small;">Photo credit: </span><a href="http://www.facebook.com/danielle.f.fields/photos#!/melissabriggsphotography?fref=ts" target="_blank"><span style="font-size: xx-small;">Melissa Briggs Photography</span></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
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<span style="font-family: Georgia;">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. </span><span style="font-family: Georgia;">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.</span></div>
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<span style="font-family: Georgia;">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.</span></div>
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<em><span style="font-family: Georgia;">"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</span></em></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com1tag:blogger.com,1999:blog-4639831650984952982.post-42429842439486167362013-01-31T16:56:00.001-06:002013-01-31T23:46:48.134-06:00The Diagnosis, Part Three<span style="font-family: Georgia, "Times New Roman", serif;">
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<span style="font-family: Georgia, "Times New Roman", serif;"><em><span style="font-family: Georgia, "Times New Roman", serif;">This is the final entry in a series of posts about Owen's diagnosis</span></em></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">By itself, an autism diagnosis is enough to process for one day…too much, really.<span style="mso-spacerun: yes;"> </span>Eight months later, and I’m still processing it.<span style="mso-spacerun: yes;"> </span>I don’t suppose it’s anything that you ever stop working on understanding.<span style="mso-spacerun: yes;"> </span>New strides are being made daily in determining more effective treatments, therapies, and interventions.<span style="mso-spacerun: yes;"> </span>Sometimes, when you finally feel like you’re starting to make headway in grasping something, BOOM!<span style="mso-spacerun: yes;"> </span>Something new shows up to throw you off your game. <span style="font-family: Wingdings; mso-ascii-font-family: Tahoma; mso-char-type: symbol; mso-hansi-font-family: Tahoma; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span><span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">The team had a variety of recommendations that they passed along to us that day.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>These types of programs help children like Owen work on their cognitive, linguistic, practical, and social skills.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">The team also recommended outpatient speech and occupational therapy services, in addition to the therapy that Owen would be receiving at his preschool.<span style="mso-spacerun: yes;"> </span>His delays in these areas were deemed to be of enough severity to warrant the additional therapy.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;"> </span>I think it’s pretty normal for families who are touched by autism to feel like they’re disconnected and alone sometimes.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>That’s OK.<span style="mso-spacerun: yes;"> </span>Time will help.<span style="mso-spacerun: yes;"> </span>He has already improved so much from eight months ago, and every day with autism is different from every other day.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>She knows where I am along the autism highway, and every once in a while, she drags me into a rest area.<span style="mso-spacerun: yes;"> </span>I hope every parent affected by autism can find a friend like that.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">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.<span style="mso-spacerun: yes;"> </span>Your whole world shifts, and you’re hit with a cornucopia of emotions all at once.<span style="mso-spacerun: yes;"> </span>The closest thing I’ve been able to compare it with is being unexpectedly roused from your sleep in the middle of the night.<span style="mso-spacerun: yes;"> </span>You’re cozy.<span style="mso-spacerun: yes;"> </span>You’re comfortable.<span style="mso-spacerun: yes;"> </span>Everything is as it should be.<span style="mso-spacerun: yes;"> </span>True, the blanket doesn’t always seem to stretch as far as it should, but you make do.<span style="mso-spacerun: yes;"> </span>You can always throw on a pair of socks or toss an extra blanket on the bed.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>On the whole, though, there aren’t many things that can beat being snugly nestled in your spot. <span style="mso-spacerun: yes;"> </span>In a stand-up comedy performance, Ben Bailey described it as “perfect comfy.”<span style="mso-spacerun: yes;"> </span>All of a sudden, your phone rings, and the safe cocoon you’ve built to surround yourself is quickly decimated.<span style="mso-spacerun: yes;"> </span>You’re up, but you’re by no means awake.<span style="mso-spacerun: yes;"> </span>You’re confused.<span style="mso-spacerun: yes;"> </span>Disoriented.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Before you even pick it up, you know your serenity has likely met its end.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">That’s how Owen’s autism diagnosis felt to me.<span style="mso-spacerun: yes;"> </span>I am a notorious planner by nature, and this was <i style="mso-bidi-font-style: normal;">not</i> part of my plan.<span style="mso-spacerun: yes;"> </span>Owen was going to be brilliant, yet funny; talented, yet humble; independent, yet loyal.<span style="mso-spacerun: yes;"> </span>I mean, he already had the brilliant and funny down, so we were well on our way. <span style="font-family: Wingdings; mso-ascii-font-family: Tahoma; mso-char-type: symbol; mso-hansi-font-family: Tahoma; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;">J</span></span> True, he didn’t speak very well, but he could verbalize well enough to make his needs and wants known.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> I could deal with that. </span>My family was everything I ever dreamed it would be.<span style="mso-spacerun: yes;"> </span>We were “perfect comfy.”<span style="mso-spacerun: yes;"> </span>Then, all of a sudden, every dream I had built up turned on a dime.<span style="mso-spacerun: yes;"> </span>I knew what autism was, but I didn’t really <i style="mso-bidi-font-style: normal;">know</i> autism.<span style="mso-spacerun: yes;"> </span>I was lost.<span style="mso-spacerun: yes;"> </span>Questions swirled like tornadoes in my head, and yet I couldn’t formulate one single question.<span style="mso-spacerun: yes;"> </span>I was afraid to even read the diagnosis papers and treatment recommendations for fear of what was waiting for us on the other side.<span style="mso-spacerun: yes;"> </span>I knew immediately that our lives would never be the same.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Ultimately, I’m just trying to raise a little boy who will grow up to be a good man.<span style="mso-spacerun: yes;"> </span>In that regard, the destination is the same.<span style="mso-spacerun: yes;"> </span>We’re just going to have to take a different route - and a few more pit stops - to get there.<o:p></o:p></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span>Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com2tag:blogger.com,1999:blog-4639831650984952982.post-35742358475761615742013-01-29T13:07:00.000-06:002013-01-31T23:46:36.330-06:00The Diagnosis, Part Two<div align="center" class="MsoNormal" style="margin: 0in 0in 0pt;">
<em><span style="font-family: Georgia, "Times New Roman", serif;">This is the second in a series of posts about Owen's diagnosis</span></em></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Though our minds were already reeling, it turned out that the medical team wasn’t quite finished with us.<span style="mso-spacerun: yes;"> </span>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:<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Generalized delays in the areas of speech/language, motor, and cognition (OK, clear enough, and not a surprise)<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Feeding concerns (due in large part to the SPD): at the time of his testing, Owen had real issues with food texture.<span style="mso-spacerun: yes;"> </span>No one texture in particular was troublesome to him; it was the combination of textures that caused the problem.<span style="mso-spacerun: yes;"> </span>For example, he could eat bananas just fine, and he could eat potato chips just fine.<span style="mso-spacerun: yes;"> </span>However, if he had just eaten six bites of banana and then tried to eat a chip, he’d gag.<span style="mso-spacerun: yes;"> </span>His gag reflex was seriously overactive.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7pt 'Times New Roman';"> </span></span></span>Hypotonia:<span style="mso-spacerun: yes;"> </span>Owen has low muscle tone – a fact that’s been confirmed by a number of medical professionals.<span style="mso-spacerun: yes;"> </span>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.” <span style="mso-spacerun: yes;"> </span>I honestly can’t think of a better word to describe it. It’s particularly noticeable when he runs.<span style="mso-spacerun: yes;"> </span>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 <i style="mso-bidi-font-style: normal;">ridiculous</i> strength.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>His physical tone is top notch; his brain just doesn’t always send the right message to his muscles.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">As shocking as some of these issues were, they were nothing compared to his overall development profile.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Owen was three years and four months old when he had his testing.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">I could’ve told you that</i>, I thought.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">He knows even more than he showed you…all of the testing was just getting on his nerves, so he was being uncooperative</i>.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">Owen’s “typical” performance ended there.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>He had a delay somewhere between 25 and 30 percent in each of these areas.<span style="mso-spacerun: yes;"> </span>The team was concerned, to say the least, but not nearly as concerned as they were about the final area of testing.<span style="mso-spacerun: yes;"> </span>In the arena of social skills, Owen’s age equivalence was twenty months.<span style="mso-spacerun: yes;"> </span>Twenty months.<span style="mso-spacerun: yes;"> </span>I did the math in my head.<span style="mso-spacerun: yes;"> </span>Three years and four months old.<span style="mso-spacerun: yes;"> </span>That’s forty months.<span style="mso-spacerun: yes;"> </span>Owen had the social skills of a child half his age.<span style="mso-spacerun: yes;"> </span>I was stunned.<span style="mso-spacerun: yes;"> </span>I was shaken.<span style="mso-spacerun: yes;"> </span>I was emphatic that they were misinformed.<span style="mso-spacerun: yes;"> </span>Denial is not just a river in Egypt, my friends.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;"><i style="mso-bidi-font-style: normal;">Half his age?<span style="mso-spacerun: yes;"> </span>I don’t know about that.<span style="mso-spacerun: yes;"> </span>I mean, I’m not sure your basis for coming up with that estimate is really legitimate.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I wouldn’t either.<span style="mso-spacerun: yes;"> </span>I’d just want to be left alone, too.<span style="mso-spacerun: yes;"> </span>Not only that, he didn’t have a lot of opportunities to socialize with others anyway.<span style="mso-spacerun: yes;"> </span>Seriously…he spent all morning alone with doctors and therapists that he’d never even met before.<span style="mso-spacerun: yes;"> </span>Do you really expect him to thoroughly engage with complete strangers?<span style="mso-spacerun: yes;"> </span>You didn’t give my husband and I an opportunity to play with him.<span style="mso-spacerun: yes;"> </span>He loves being goofy with us.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Talk about crazy play and socialization when they’ve teamed up, believe me!<span style="mso-spacerun: yes;"> </span>Do you really think you’re being fair?<span style="mso-spacerun: yes;"> </span>I don’t see how you can possibly make that kind of decision without considering other scenarios.</i><o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">I said all of those things.<span style="mso-spacerun: yes;"> </span>Loudly.<span style="mso-spacerun: yes;"> </span>Enthusiastically.<span style="mso-spacerun: yes;"> </span>Passionately.<o:p></o:p></span></div>
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<span style="font-family: Georgia, "Times New Roman", serif;">In my head.<o:p></o:p></span></div>
<span style="font-family: Georgia, "Times New Roman", serif;"></span>Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-5815861717243859972013-01-28T13:06:00.000-06:002013-01-28T23:09:36.663-06:00The Diagnosis, Part One<div align="center" class="MsoNormal" style="margin: 0in 0in 0pt;">
<em><span style="font-family: Georgia, Times New Roman, serif;">This is the first in a series of posts related to Owen's diagnosis.</span></em></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">For the uninitiated among us, at the time of Owen’s diagnosis, there were five disorders that were classified as being on the spectrum:<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size: 7pt; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span>Classic autism<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size: 7pt; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span>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)<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size: 7pt; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span>Childhood disintegrative disorder<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size: 7pt; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span>Rett’s syndrome<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size: 7pt; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span>Pervasive developmental disorder not otherwise specified (PDD-NOS)<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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).<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>He also hadn’t experienced regression, the hallmark of childhood disintegrative disorder.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Georgia, Times New Roman, serif;">Gasp!<span style="mso-spacerun: yes;"> </span>I said the word “autistic.”<span style="mso-spacerun: yes;"> </span>Embracing my own ability to become easily distracted from the issue at hand and commencing mini-rant in 3…2…1…<o:p></o:p></span></i></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I’ve learned a number of things during the eight months that we’ve all been trying to adjust to our “new normal.”<span style="mso-spacerun: yes;"> </span>Some parents blame vaccines (I don’t).<span style="mso-spacerun: yes;"> </span>Some parents sing the praises of special diets (we tried it; it’s not for us).<span style="mso-spacerun: yes;"> </span>Some parents are offended by use of the word “autistic,” since it puts a label on the child.<span style="mso-spacerun: yes;"> </span>Instead of saying that the child “is autistic,” these parents prefer to say that the child “has autism.”<span style="mso-spacerun: yes;"> </span>Is autistic.<span style="mso-spacerun: yes;"> </span>Has autism.<span style="mso-spacerun: yes;"> </span>Sounds about the same to me.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>You know what offends me?<span style="mso-spacerun: yes;"> </span>Ignorance, not semantics. <span style="mso-spacerun: yes;"> </span>Say it either way you want - doesn’t bother me. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>A person <i style="mso-bidi-font-style: normal;">has</i> a cold.<span style="mso-spacerun: yes;"> </span>A person <i style="mso-bidi-font-style: normal;">has </i>a stomachache.<span style="mso-spacerun: yes;"> </span>They are momentary afflictions, meant to be addressed and moved past.<span style="mso-spacerun: yes;"> </span>Owen is autistic.<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>It’s not wrong.<span style="mso-spacerun: yes;"> </span>It’s not unnatural.<span style="mso-spacerun: yes;"> </span>It just <i style="mso-bidi-font-style: normal;">is.</i><o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Georgia, Times New Roman, serif;">Rant completed…where was I?<o:p></o:p></span></i></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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 <i>that</i> one. </span><span style="font-family: Tahoma;"><o:p></o:p></span></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-26042053151389630632013-01-25T09:09:00.001-06:002013-01-28T23:09:44.459-06:00Don't Compare Your Children<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Georgia, Times New Roman, serif;">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.<o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Georgia, Times New Roman, serif;">Don’t compare your children.<o:p></o:p></span></i></div>
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<span style="font-family: Georgia, Times New Roman, serif;">You hear it.<span style="mso-spacerun: yes;"> </span>You try your hardest to listen. You fail.<span style="mso-spacerun: yes;"> </span>Miserably.<span style="mso-spacerun: yes;"> </span>Well, you know what I say?<span style="mso-spacerun: yes;"> </span>That’s OK.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Practically from their moments of conception, my two children could not possibly have been any different from one another.<span style="mso-spacerun: yes;"> </span>In 2002, on our first anniversary, Bill and I learned that our first child was on the way.<span style="mso-spacerun: yes;"> </span>Though not high risk, and certainly not as difficult as it could have been, the pregnancy was by no means easy on me.<span style="mso-spacerun: yes;"> </span>I had severe morning (and afternoon…and night) sickness for nearly eight months.<span style="mso-spacerun: yes;"> </span>By the end of the third month, I had lost twenty pounds.<span style="mso-spacerun: yes;"> </span>I was an emotional train wreck, which was a difficult row for someone who is a self-described “robot” to hoe.<span style="mso-spacerun: yes;"> </span>Virtually every hour that wasn’t spent working, throwing up, or crying was spent sleeping.<span style="mso-spacerun: yes;"> </span>I was a mess.<span style="mso-spacerun: yes;"> </span>I hated every minute of being pregnant.<span style="mso-spacerun: yes;"> </span>Every minute.<span style="mso-spacerun: yes;"> </span>Isn’t that a terrible thing to say?<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<span style="mso-spacerun: yes;"> </span>As soon as we found out we were expecting a boy, we decided upon the name Joshua.<span style="mso-spacerun: yes;"> </span>It fit him perfectly.</span></div>
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<o:p><span style="font-family: Georgia, Times New Roman, serif;">Josh (about nine months) with my dad (a little more than nine months)</span></o:p></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The first six years of Josh’s life were medically tumultuous, to say the least.<span style="mso-spacerun: yes;"> </span>Immediately after birth, he had a fever, and his pediatrician was concerned at the “perfect roundness” of his head.<span style="mso-spacerun: yes;"> </span>After a head ultrasound and ten days of antibiotics, he was deemed healthy and released to finally join us at home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>The general consensus seemed to be, “We think something’s wrong with him; we just don’t know what.”<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">In kindergarten, we got a scary surprise in the form of Josh’s first asthma attack.<span style="mso-spacerun: yes;"> </span>It was followed by a more severe attack a few months later that landed him in the hospital for three days.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Fast forward to 2008.<span style="mso-spacerun: yes;"> </span>After purchasing our first home, and after many, MANY requests from Josh, Bill and I decided the time was right to have another baby.<span style="mso-spacerun: yes;"> </span>Given my less-than-desirable experience with my first pregnancy, I had been in no hurry to try all of that again.<span style="mso-spacerun: yes;"> </span>However, that spring, we learned that we’d been gifted with another blessing.<span style="mso-spacerun: yes;"> </span>Josh wasn’t going to get the sister he had requested, but he was OK with that.<span style="mso-spacerun: yes;"> </span>He enthusiastically requested that we name the baby Anakin, since he was on a gigantic <i style="mso-bidi-font-style: normal;">Star Wars</i> kick at the time.<span style="mso-spacerun: yes;"> </span>As much as we hated to disappoint him, we politely declined.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The pregnancy was an absolute dream.<span style="mso-spacerun: yes;"> </span>I had not a minute of morning sickness.<span style="mso-spacerun: yes;"> </span>Not one.<span style="mso-spacerun: yes;"> </span>My hormones and emotions were completely in check.<span style="mso-spacerun: yes;"> </span>I had more energy than I had when I wasn’t pregnant.<span style="mso-spacerun: yes;"> </span>The only pregnancy symptom I had was an insatiable craving for fries.<span style="mso-spacerun: yes;"> </span>I actually enjoyed being pregnant.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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).<span style="mso-spacerun: yes;"> </span>We had settled on the name Owen.<span style="mso-spacerun: yes;"> </span>Good choice.<span style="mso-spacerun: yes;"> </span>He looked like an Owen.<span style="mso-spacerun: yes;"> </span>Plus, it pacified Josh, once we reminded him that Luke Skywalker’s uncle’s name was Owen.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="mso-spacerun: yes;"></span><o:p>Owen (a whopping two hours old)</o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.<span style="mso-spacerun: yes;"> </span>Shockingly healthy.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I was relieved not to have to take him to the doctor every two weeks just to have his weight checked.<span style="mso-spacerun: yes;"> </span>He grew and thrived…he was even chubby!<span style="mso-spacerun: yes;"> </span>Josh had never had so much as a lick of fat on him.<span style="mso-spacerun: yes;"> </span>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.”<span style="mso-spacerun: yes;"> </span>Truthfully, I didn’t know whether to be offended or relieved.<span style="mso-spacerun: yes;"> </span>I guess I was a little of both if I still remember it after all this time.<span style="mso-spacerun: yes;"> </span>I just couldn’t believe how very different our second experience had been.<span style="mso-spacerun: yes;"> </span>Nothing was the same.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i style="mso-bidi-font-style: normal;">Don’t compare your children</i>.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Owen met most of his milestones at basically the same time that Josh had met his.<span style="mso-spacerun: yes;"> </span>They rolled, crawled, stood, and walked at virtually the same time.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I knew that it was a difficult comparison to make, because Josh has always been wildly verbose (to put it respectfully).<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>No matter how hard I tried, though, I just couldn’t shake the concern.<span style="mso-spacerun: yes;"> </span>At Owen’s 18 month checkup, I brought up the subject with our pediatrician.<span style="mso-spacerun: yes;"> </span>He made the magical comment.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i style="mso-bidi-font-style: normal;">Don’t compare your children</i>.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">The doctor told me that Josh spoke more than virtually any child that he knew at that age, so comparing them was fruitless.<span style="mso-spacerun: yes;"> </span>He asked if Owen could say a dozen words.<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;"> </span>The doctor talked me down from my worries, convinced that Owen was fine...maybe even advanced.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">At around two, Owen started walking on his tiptoes.<span style="mso-spacerun: yes;"> </span>WAY up on his tiptoes.<span style="mso-spacerun: yes;"> </span>We’re talking ballerina en pointe style.<span style="mso-spacerun: yes;"> </span>I had no idea how he could possibly maintain his balance walking like that, let alone how he didn’t exhaust himself.<span style="mso-spacerun: yes;"> My calves would have been on fire. </span>Walk on those tiptoes he did, though.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Georgia, Times New Roman, serif;">Don’t compare your children.<o:p></o:p></span></i></div>
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<span style="font-family: Georgia, Times New Roman, serif;">Owen continued to grow and thrive, but he grew distant.<span style="mso-spacerun: yes;"> </span>He never really looked people in the eye.<span style="mso-spacerun: yes;"> </span>He didn’t play with kids his own age.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>At his three year well-child check, the doctor commented that Owen wasn’t really engaging with him during the exam.<span style="mso-spacerun: yes;"> </span>He started in with a barrage of questions: “Does he play with other kids?<span style="mso-spacerun: yes;"> </span>Is he loving?<span style="mso-spacerun: yes;"> </span>How have his speech and toe-walking gotten?”<span style="mso-spacerun: yes;"> </span>After about ten questions, I just blurted out, “I know what you’re getting at.<span style="mso-spacerun: yes;"> </span>You can say it.”<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Though we wouldn’t have an official diagnosis for another four months, I suppose I really knew that day.<o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Georgia, Times New Roman, serif;">Don’t compare your children.<o:p></o:p></span></i></div>
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<span style="font-family: Georgia, Times New Roman, serif;">These days, Josh has developed into a relatively healthy, growing ten-year-old.<span style="mso-spacerun: yes;"> </span>He’s even a little bit pudgy around the middle.<span style="mso-spacerun: yes;"> </span>He hasn’t been to the doctor for an appointment other than a standard checkup in over two years.<span style="mso-spacerun: yes;"> </span>My sickly little boy has grown and adapted into a healthy big kid.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I think I spent so much time trying to adopt that age-old adage that I failed my child somehow.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i style="mso-bidi-font-style: normal;">Don’t compare your children</i>.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">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.</span></div>
Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0tag:blogger.com,1999:blog-4639831650984952982.post-83547304455555799122013-01-24T15:59:00.000-06:002013-01-28T23:09:53.230-06:00Five Simple Words<span style="font-family: Georgia, Times New Roman, serif;">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.</span><br />
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Tick. <em>What if it's true?</em></span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Tock. <em>We'll learn to deal with it.</em></span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Tick. <em>At least we have friends in the same boat.</em></span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Tock. <em>It might be a totally different boat. There might not even be a boat.</em></span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Tick. <em>Let's hope not. I'm afraid of boats.</em></span><br />
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"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.</span><br />
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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.</span><br />
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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.</span><br />
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<em>He doesn't talk much because his brother does all of his talking for him.</em></span><br />
<em><span style="font-family: Georgia, Times New Roman, serif;">He walks on his tiptoes because he's curious and wants a better look at the world.</span></em><br />
<em><span style="font-family: Georgia, Times New Roman, serif;">He doesn't respond to requests or commands because he's a bull-headed three-year-old boy.</span></em><br />
<em><span style="font-family: Georgia, Times New Roman, serif;">He doesn't like to be cuddled because he's fiercely independent (just like me!)</span></em><br />
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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. <em>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.</em> 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."</span><br />
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My heart hit the floor.</span>Daniellehttp://www.blogger.com/profile/00976832821988121100noreply@blogger.com0