Monday, February 3, 2014

The A Word

Most people, from the moment they find out they're pregnant, hope and pray for the perfect baby.  I think in a lot of cases we don't even know what that really means.  Healthy, yes, but beyond normal functionality I don't think most of us get too specific.  Most people probably don't spend significant amounts of time praying their baby avoids their environmental allergies, for example, but I'm sure at least once I specifically asked that my kids be spared of major food allergies, cancer, or anything else that would shorten their lives or significantly reduce their happiness.  I mostly just prayed that they would grow into happy, functional adults and live a long, healthy life.

You worry nonetheless but hope that God knows what he's doing.  But what happens when some of your worst nightmares start coming true?  What do you do when the bullets you thought you dodged boomerang back around?  That's sort of the spot we're finding ourselves in right now, at least to some degree.

I think my biggest fears with both kids were probably 1) Anything that could lead to their death (cancer, SIDS); 2) Anything that would be life-alteringly awful (deformities, major food allergies); 3) Autism or any other severe mental issue.  As Jacob got older, I thought we had gotten past those problems, at least as much as you can.  Cancer or accidents are always wildcards, obviously, but aside from a few behavior issues, his respiratory issues, and his milk protein intolerance early on, he was by all accounts a normal kid.  We had a healthy and happy kid.  And then the last six months happened.

Well, maybe the last year.  I don't want to pin Jacob's behavior issues on Carter's arrival because there were certainly issues before that.  They seemed to intensify a bit before Carter was born, and again about six months after, and while I'm sure that's a contributing factor (I'm probably more confident of that now that I was earlier), I'm sure there were various foundations set before Carter even existed.  In the last six months, his behavior problems have become a major disruption to daily life.  He's also been diagnosed with Celiac disease, which has sent our typical household menu into a tizzy.  It's all been very jarring to our simple, normal existence.  I never imagined we'd be facing down such an array of evaluations or having to put so much effort into having a "normal" daily life.

Today I got a call from the psychologist at Jacob's school.  She had started evaluating him prior to the holidays, and we hadn't really heard anything.  She wanted to make an appointment to discuss the results.  She gave me a bit of a preview, starting out with a rundown of his test scores from all of the different evaluations she did.  As a whole, he scored very high.  In most cases he was on the high end of average, or in a couple cases, as high as the 99th percentile.  He's obviously very intelligent, particularly in the non-verbal, visual realm.  The one area where he struggled was with writing his alphabet.  The test was to see how many letters he could write in 30 seconds.  He only got...two.  He was distracted and needed a lot of prompting, and it took over five minutes for him to do all of them.  That is nothing new, and that revelation transitioned into the more difficult part of the call, which was his behavior issues.  Based on what she was seeing in the evaluation we filled out, and what she's seeing on her end, she wants to do a little further evaluation, this one focused on Asperger's.  Obviously if he's on the spectrum he'd be considered high-functioning, but actually hearing someone finally use that term in an official "suspicion" sort of way (meaning, the red flags may be pointing in that direction) was hard, even though we've known for a while that it could be possible.

Heck, if you look back in the blog, I remarked a couple times how his stubbornness made me wonder what was up with him, even comparing his behavior to the character Max in the TV show "Parenthood".  Max has Asperger's, and while I know it's just a TV show, there were some eerie similarities.  But the thing that always made me think that wasn't the case was that Jacob was always more social than you'd think a typical kid on the spectrum would be.  He made eye contact, he was chatty, he was relatively normal, all the way up through the ages and stages where Asperger's is supposed to become apparent.  Even now, with all we've been through, he CAN be normal.  It doesn't happen a ton, but he can be totally normal and friendly for significant periods of time, and I just don't know if Asperger's kids can just "turn it off" at times.  It's just odd.

On a side note, a couple weeks ago I noticed that a friend of mine (who has her own son with some behavioral challenges) commented on Facebook on a photo posted by an autism support page.  The picture showed a city bus with an ad (possibly for a medical facility) talking about the ultimate goal of eradicating cancer, diabetes, and autism.  People (parents of kids on the spectrum, to be exact) were very upset by this ad, saying that their kids don't need to be "fixed" or whatever.  Maybe I'm just an outsider still, or a bad parent, but I just don't agree.  Yes, kids are all great and unique.  Autistic kids can have amazing strengths and skills, and I get how parents wouldn't want to change their kids, per se.  But, honestly, if I could better my child's quality of life, or prevent other kids from having difficulties like this, why wouldn't we strive for that?  I understand that things like cancer and diabetes are far more physically damaging, for sure, but am I nuts that I'd prefer my kid to be able to interact normally within society?  My boss and I were talking about it and she concluded it's like the people that are against cochlear implants.  They claim it's damaging to deaf culture and there's nothing "wrong" with being deaf.  But silly me, can't hearing be helpful in integrating into normal society and advancing one's career or improving interactions with loved ones?  I love Jacob, but--wrong or not--when I see him, I see so much potential that is being stifled by his inability to shut off the stuff in his brain that's dragging him down.  I am blown away by his vocabulary, math skills, and artistic abilities, but I'd be lying if I said I wouldn't trade even a tiny piece of all of that to have a kid that was able to enjoy his life without obsessing over wearing a certain color shirt or thinking that his little brother somehow spit on him from four feet away, rendering his food contaminated.  There's just not a lot of quality of life there, for any of us, and I can't for the life of me understand why people would have any issue with "curing" autism if it meant that their child would have a better life.  It's one thing to love and support your child unconditionally...but it's another to act like their world (and yours) wouldn't be better if they were able to fit in with their peers and communicate better with the world around them.  I just don't get it.  Maybe someday I will. 

So, anyway...we have more paperwork to fill out and we'll get the full story on the rest of it next Monday.  We still need to get in with the specialist, which will hopefully give us more answers.  Our main hope at this point (regardless of diagnosis) is to get some coping techniques to help us manage the hitting and the hardcore defiance--like when he needs to go to school but refuses to wear anything in his closet.  It kills me that this is our reality right now, but we're doing everything we can to get answers and help Jacob through this.  I pray that we find a solution that works for him, and for us.  I know there's an amazing kid in there, and while the flashes are great, I wish so badly that his bright shining light could come through all the time.

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