Our Autism Story

What is AUTISM?

Here's the simple and plain explanation from Autism Speaks, an Autism advocacy group:


                      Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.

                     Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.
By way of comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.



Okay, so here's our story.  You'll find that no two stories are the same, just like no two individuals on the Autism spectrum are the same.

SE was what you would call a 'good baby'.  He rarely cried, was content to chill out in his swing, etc.  At around 12 months he had no words yet and after a fight I was able to get him to a civilian pediatrician instead of one at the Army post we were stationed at.  I have my reasons that I won't go into here (because it's a WHOLE other story..LOL) but just know that I was very irate and I demanded to have my son seen off post.  At any rate, his 12 month check up happened at 13 months and while the pediatrician didn't suspect anything, I did.  I asked why he wasn't saying any words yet.  Her answer: he's delayed, we'll get him in speech therapy.  Why does he act like he can't hear us sometimes? Her answer: we'll order a hearing test.  So..at 14 months I pulled out my DSM-IV (a handbook for diagnosing psychological problems) from my psych nursing course and diagnosed him myself.  He had Autism...I was sure of it.  Hubs was in Iraq so I told him about my suspicions over Skype.  Now that was a lovely dilemma.  Do I tell my husband that his son has a lifelong disability while he's 5,000 miles away in a war zone or do I withhold it and spring it on him when he's back for R&R? 
Well, I believe in being up front so I told him.  Silence.  I knew he was processing.  That or the crappy internet over there had frozen the screen at the most inappropriate time EVER.  He said to me, "well let's see what the pediatrician says".  I made an appointment right away to address my concerns.  She blew me off.  I made another appointment, this time it was after I had passed my NCLEX (nursing exam) and given birth to C, so about 3 months later.  Hubs was home on R&R and we went together.  Her response? "I think you just have a challenging 2 year old". 

Really?  Well...this mama wasn't satisfied.

I mean seriously...who would think something was wrong with this adorable kid?!?!? I'm a little biased I admit.

 

 

Well, me.  That's who.  After hounding our pediatrician she scheduled a battery of tests.  First, a free field hearing test, then a sedated ABR using Chloral Hydrate to sedate him.  Too bad it didn't really sedate him.  The nurse gave 2 doses and while we managed to find out his hearing was FINE, he had gone through a horrific ordeal.  BTW- for some reason Chloral Hydrate does NOT react well with kids on the autism spectrum...something I found out when we had to take SE in for a sleep deprived EEG and the nurse there informed me why they don't use Chloral Hydrate.  I told her to pass the message down to the audiology dept.  They gave us another sedative and he did fall asleep long enough to get all the electrodes on his head, then he woke up and thought.....where the hell am I and why are there wires coming off my head?!?! 

 



Then it was a sedated MRI of his brain...

And after ALL that, our pediatrician tells me that the developmental pediatrician that makes autism diagnoses in my town doesn't like to see kids until they're 3!  Um, WHAT?!?!?!  Where has she been hiding??  Under a freaking rock apparently.  There is stacks upon stacks upon STACKS of research indicating that the earlier the child is diagnosed, the better.  Early intervention therapy is KEY!  For every $1 we spend on early intervention for these kids it's $7 saved when they're adults!  Not to mention it's when the brain is the most receptive to information and dare I say it...training!  But I digress.  I would just have to put on my cape and become....Supermama.  If I wouldn't advocate and push for the right things for my kid...no one would.  So I told my ped to find me a doc that would see him in Denver.  6 month wait and we were PCSing (moving to a different Army post) in 2 months.  By this time we had seen the developmental ped in town and she gave him a PDD-NOS diagnosis.  Hmph, whatever.  I found a private counseling firm with a child psychologist that could get him in.  In Parker, CO.  We made the drive, he was tested, 2 weeks later I went up again and the psychologist sits me down and braces me for this life altering news that, surprise surprise...my son has Autism.  Thank you captain obvious.  She was very impressed at my reaction.  It was more of a thankfulness than sorrow.  She kept asking if I was okay.  Yep, more than okay.  I was great.  I now held in my hand the report that would be able to get my child the services he so desperately needed and deserved.  It was like I was Charlie from Willy Wonka and the Chocolate Factory and I had the golden ticket!!!  And it only took me.....a year and a half.  A YEAR AND A HALF.  A FREAKING YEAR AND A HALF!!!!!!! I felt like one of those ladies that had to open all those boxes of chocolate bars for Veruca Salt's father...keeping with my Willy Wonka theme there. ;)

So we moved and got SE signed up with the Army EFMP program and enrolled in ECHO (love all these Army acronyms huh?) and into a center....that was a 45min drive ONE WAY away.  But it was worth it when 2 weeks later my son said his very first word to me.  "Hi".  Then we started to worry about C. 

Seriously?? 

Was this really happening?!?!?!  One I can handle, but two?!?!  Luckily this time around our on post pediatrician was VERY proactive.  She first saw C in September and he had a diagnosis from KU Med in January.  Now that was kinda defeating, depressing and well....that's another blog for another day...I'll tell you ALL about how I dealt with that blow.  But C started receiving services too, 2 months after his diagnosis!

 And now we have a team of therapists coming into our home to see the boys and SE goes to preschool and gets services there too.  I'm a firm believer that if you put the blood, sweat and tears (on both ends...us and the boys) in now...it will pay off in the end. 

What I want people to take from this is the fact that it was SO difficult to get SE's initial diagnosis.  I don't know if our doc didn't want to "label" him too early or what.  But who really cares??  We (autism families) need the paperwork to get the ball rolling!!!  I'm impressed with our Army provider and KU for getting things going so quickly with C.

 

 

So that's it.  The good, the bad, and part of the ugly.  It sucks, I won't lie.  There are still why my boys, why me, why our family days, but that comes with the territory.  And it's part of what makes me a

Supermama!!!!