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Archive for May, 2013

There are a lot of parents of autistic children out there who just want to “fix” their child.  Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that.  Have I fully embraced the neuro-diversity camp?  No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different.  That sense of helplessness is what can get us, parents, into trouble.  We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them.  Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

***

Yesterday Brooke has her annual check up with her pediatrician.  I like our pediatrician.  She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude.  She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business.  So yesterday we had Brooke’s annual.  After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really!  now this?  another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope?  In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn.  Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s.  The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain?  What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there.  I’m a parent.  I can’t help it.  I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures.  A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer.  How awful is that?  There is a small part of me that is now hoping, maybe it’s been Celiac disease all along?  Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope...

grasping for hope…

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I generally don’t buy into the whole “slippery slope” theory of life.  You know the theory, where people are afraid that if we “let” gay people get married, then before you know it, people will be marrying their turtles, their horses, their coffee makers or their jobs…wait, scratch that last one.  These are the same folks who will tell you that if we put any kind of regulation on gun sales and ownership then the next inevitable step is that the government will take away all of our guns, impeding our ability to defend ourselves against F-16’s, artillery, tanks and submarines…because you just have to know where to aim your .44 to take out the tank rolling down the street or the Stealth Bomber flying overhead, right?

This week however, I read a story that’s now everywhere that made me cringe and immediately think, “oh boy! that’s a slippery slope!”

Michael Jefferies, the CEO of Abercrombie & Fitch has gone public with his belief that he doesn’t want overweight or ugly people wearing his product line.  The store does not sell items over a certain size for women because he doesn’t want any “fat chicks” who “aren’t cool” as walking advertisements – and as we all know, fat = uncool, right?  They do sell some larger sizes for boys because, well, football players are cool.

This blatant exclusionary policy is frightening to me.  I’m sure in his world, I’m sure that neither Brooke nor Katie would not qualify to wear his brand.  Ultimately, the whole “you’re not cool enough” to be seen in our clothes is really sad more than anything else.  Seems to me that Michael Jefferies may be trying to make up for a rough childhood maybe?  Perhaps Jefferies felt the sting of exclusion as a kid and now is doing whatever he can to surround himself with the very people who rejected him in high school?  I don’t know.  Maybe not, but I will say this to Jefferies – watch out for that slippery slope man.  Have you looked in the mirror lately? You look like a first year medical student did your facelift with a hatchet…not exactly the face of someone a company that pushes young, beautiful and thin would want as their CEO.  How long before they realize YOU don’t fit into your own policy of young, thin and beautiful?  You don’t even fit into one of those categories.  It’s a slippery slope dude…just sayin’.

It's a slippery slope dude.

It’s a slippery slope dude…at least I hope it is.

 

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The TARC 100 is less than 6 weeks away.

#AutismStreaks currently stands at 125 days.

For the last week or so I’ve been suffering from Plantar Fasciitis in my left foot.  I tried to burn it out of my foot early with a barefoot 3-miler, but it didn’t work…it may have something to do with landing on a rock right in the tender spot where it hurts, I’m not sure.  The bottom line is that this past Friday the pain took a turn for the worse.  After a 5-miler on Friday that was maybe just a tad bit too speedy, the pain, which had been holding steady, became a bit more intense.  As a result, the 24 miles I had planned to run this weekend turned into 2 – 1 mile on Saturday and 1 mile on Sunday.  Looking ahead, I know there is no way I will be able to run a 50-mile training run this coming weekend as I had planned.

So what to do, what to do?  I am trying to balance the need to get myself healthy as quickly as possible (i.e. rest, heal, resume a compressed training schedule for the 100) and the need to keep the streak alive.  True, my original goal for #AutismStreaks was 100 days – and I not only hit my goal, but ran more miles than I had originally shot for.  But now 25 days later, with the streak still alive, I have dared to eye the possibility of attempting 365 days.

Although the situation is fluid, as most things in life are, my current thinking is this:  when confronted with a speed bump, slow down.  So I will continue for a couple more days with easy 1-milers so I can keep the streak going while essentially resting and hopefully healing my foot.  I must say though, running 1 mile can be very dissatisfying – almost like going to a fancy restaurant for a big dinner and then being told after you’ve eaten the appetizer that you’ll have to leave without dinner, dessert or wine…not satisfying at all.

Hope you are getting in more mile than me!

Luau

you can see it on my face...not satisfying, not satisfying at all!

you can see it on my face…not satisfying, not satisfying at all!

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