Has anyone seen my focus?

If you have, please give it my phone number or address.  I haven't seen it in weeks.

Stuff happens but I can't seem to get it together enough to sit and write it down.

If I could, I'd write about how yesterday morning, Zack wanted to go outside so he went over and opened the front door.  By himself for the first time, as far as I'm aware.  Our front door is big and solid and sticks in warm weather, and historically, young children can't open it.

It was before 7 AM, so I told him no, we weren't going outside yet.  He tried for the back door, then.  So I told him to get dressed and then he could go out in the backyard.

A few minutes later AJ took one look at Zack climbing up the slide, and tried to have a little backyard play time himself, also in his PJs.

I brought him upstairs to get him dressed, waking Mark and telling him to go watch Zack out in the backyard.  He came right back, and said "Zack's not outside, he's in the living room."

"Oh, he must have come back in," I replied.  AJ was dressed now, so we went downstairs, and two things registered immediately, one after the other.  The front door was wide open.  And Zack was nowhere to be seen.

I went straight to a hopeful state of denial and thought no, he couldn't have gone out the front door, and I checked the backyard and the basement before admitting that Zack had to have gone out the front door, and into our wide open, unfenced, unaware neighborhood.  I stepped out onto the front stoop and saw him right away - he was bouncing around in our next door neighbor's front yard.  He wasn't far away, he wasn't in danger, and I wasn't dressed for public viewing, so I called Mark and he threw on some jeans and ran over to fetch Zack.  Whew.

After seeking advice from my Fragile X Family friends and parents, I am in the market for a product called the Door Guardian.  So that my two monkeys won't open the door one day and decide to run away to Australia and start a Wiggles tribute band.

If I had any focus, I might also talk about how we were at Grandma & Grandpa's yesterday and Zack showed us his inability to transition from wintertime-stay-in-the-house to springtime-go-outside-and-frolic.  We tried to make him, but he's bigger and stronger than he used to be and cannot be made to do things he doesn't want to do.

Beautiful warm weather - stand aside, I've got an iPad and I'm not afraid to use it.

Brief Thoughts, Briefly

I have things pop into my head daily that I'd like to write about.  Thoughts I'd like to pursue thoroughly.  But I just don't have the uninterrupted time.  So I'm going to touch a few of the dozen or so things I thought about writing about in the past week or so, here.

1.  Isn't it amazing how quickly after the Boston Marathon bombings that the suspects were identified and captured (or killed)?  5 days.  Impossible without modern social technology, I'm sure.  It was just one more example of how print media is going to be completely unable to keep up with news.  Magazines and newspapers are going to have to stick to human interest stories and avoid anything timely, because by the time they can print it and disperse it, it'll be history.

2.  And another thought about the Boston Marathon bombing - I couldn't help feeling special sympathy for those who were injured and will suffer lifelong disabilities.  I'm going to be daring and say, I felt more sympathy for them than even for the families of those who died.  Of course it's tragic to have your child's life cut short by something like this.  Something so completely avoidable and unnecessary.

The reason is because I think the media gives so much attention to the deceased, and not enough to the disabled.  The ones I really feel for are the ones who survived, whose lives will go on, but not at all in the way they had been living up until last Monday.  Those who lost limbs, or whose limbs won't work right even after they recover, and especially - those with brain injuries.  Those who might recover visibly, but whose minds will never work the same again.  I'm absolutely positive this comes from my personal experience raising children with brains that don't work right - but those are the people I feel the most strongly for.  And they get virtually no media attention.

Not that they want it.  Not that I think they should get it.  They probably don't.  But the way the media honors and dignifies those who died - I wish they'd show similar respect to those who will live differently, and probably with a lot more difficulty, now.  They are telling us what to think, by what they tell us - and I feel like (and feel free to disagree with me, but like I said, I know this comes directly from my experience with my kids) they are telling us that those who died and their families suffered the most - they are at the top of the suffering pile - and anyone who survived should just be grateful they survived and they aren't at the top of that pile.  And I'm sure they, and their families, are grateful.  But I can't help but feel for the mothers of the people whose bodies and brains were permanently broken, and who will live, but with challenges and trials they never dreamed they'd encounter, and that will never get the attention of any news media outlet.

That's enough of that.  Please don't send me hate comments for not respecting the dead.  I do respect them, and their families.  I just wish there was more respect and sympathy, and lasting sympathy, for the life changing injuries, and less of a "they are just fine because they survived" attitude.

I don't know if I explained that well and I'm not going to review it before sending this out, so please try to understand that I'm not trying to minimize the pain of those who lost children.

3.  We just returned from a trip to Chicago for an Arbaclofen, STX209 drug trial.  Here's a cute but blurry iPhone photo of the boys in the car on the way home yesterday.

The trip was as uneventful as you'd want a roadtrip to be.  A little bit of weather to deal with but mostly we left a spring snowstorm behind in the Twin Cities, and we arrived in Chicago just as the rain and flooding were starting to dry up.  It wasn't pretty, but it wasn't terrible.

It was a little alarming to hear about how the company sponsoring the drug trial is having money issues, and there is a possibility this trial will end, without being approved by the FDA.  Hopefully if they have to cancel trials, they'll cancel some other drug trial that isn't as close to being completed as this one.  Phase 3 of this trial (the one the boys participated in) ends in June, and then it's just a matter of paperwork and business stuff, and it could be approved and on the market by spring of 2014.  If they can keep it going.  We haven't been reimbursed for the trip we took in January yet, and now we just added another one to their bill.

I'd hate for us to stop having to take the medicine, and I'd hate for all our travels and all those blood tests and urine samples and stress to have been for nothing.  I'd hate for this medication to be delayed in getting to other people with Fragile X.

4.  We had talked about going to Canton, IL after our appointment on Friday to attend the 10th Annual Walk for Fragile X put on by Holly Roos, but we couldn't work out the travel and hotel details in a way we thought would work for the boys.  We are a little high-maintenance, and while AJ and Zack have become really excellent little travelers, there are still certain things that need to be in place for it to work.  And it ended up being a puzzle I just couldn't complete.

There's also the fact that after a drive to Chicago and an appointment at Rush, we are all pretty beat.  What they needed after that was rest, not more anxiety-inducing activities.  I shouldn't have tried to combine the trips.  If we could have made Canton it's own trip, all by itself, it would have worked better.

I have seen all the pictures online from the Walk and the gatherings before and after, and while it looks so fun, it also looks impossible.  I could have gotten Zack through some of that, but he would never have tolerated the amount of socializing I see the other Fragile X kids participating in.  AJ could have done it, but he'd have been outrageously stressed out.  I don't know how they all did it.

Seeing the Person before the Disability

In the disability world you may have noticed a big campaign going on for the past couple of years.  (At least that's how long I've been aware of it.)   The campaign is called "People First."  It's to remind you that people with disabilities are just people.

Do you wear contacts or glasses?  Did you know that you have a disability?  You do.  It's just that wearing glasses is so common it's become normal.  Nobody considers someone whose eyesight is failing to be disabled.  It's a disability that even has a cure, now - lasik.

The problem is that the general public is a lot less comfortable with the less common disabilities.  Wearing glasses makes you look smarter.  Glasses add to your attractiveness and desirability, at least that's what producers of eyewear would have you believe.  Sitting in a wheelchair doesn't work that way, does it?

If you have kids with disabilities, you have a front row seat to their lives.  You probably don't have any problem knowing the person before the disability.  If you don't have kids with any kind of disabilities, however, it's harder.  It takes an enormously open mind to see the person, rather than the person-in-a-wheelchair or the person-who-can't-talk-normally or the person-missing-a-limb.  Without experience with these people - without having opportunities to get to know the people who live with disabilities - it's next to impossible to have that enormously open mind.

It's easier if you knew the person before he or she had a disability.  If it's something they weren't born with.

Remember Jack Jablonski?  I wrote about him before, here.  He's the local teen who was paralyzed during a high school hockey game.  He has received so much love and support.  It's easy to see Jack, and not the disability because he was a nondisabled person, first.

I met a girl named Marrie last year.  Her name is pronounced Mary.  Here's a short video of Marrie testifying at the Minnesota State Capitol.

She has a twin sister named Carrie, and Marrie was born with cerebral palsy.  I got to know her last year at Partners in Policymaking, and I got to see the person behind the body that doesn't work quite right.  I've never experienced Marrie-without-the-disability, but I can see past it now, because I got to know her.

I know, I've harped on this subject before.  The recent death of Roger Ebert got me thinking about it again, though.  Roger Ebert was disabled.  Most of us don't think of him that way, because we knew him before he had a disability.  He was a person-without-a-disability first. 




Cancer took away a lot of his face and his ability to talk, but thanks to modern technology, he still had the ability to communicate.

In this video, Roger explains with heartbreaking personalization why society is so uncomfortable with living, working, and playing alongside people with disabilities:

"It is human nature to look at someone like me and assume I have lost some of my marbles.  People talk loudly and slowly to me.  Sometimes they assume I am deaf.  There are people who don't want to make eye contact.

It is human nature to look away from illness.  We don't enjoy a reminder of our own fragile mortality."

"We are all just one banana peel away from joining the disability movement."
(I heard this for the first time at Partners in Policymaking, but if you Google this phrase, you'll find it attributed to several different people.)

 

When you hear about battles for legislation to help people with disabilities, think about Roger Ebert. Think about Marrie and Jack.  And watch your step, literally and metaphorically.

Cars These Days!

We drive old cars.  I don't go to auto shows or pay any attention to car commercials, because unless I win a lottery, I'm likely never going to have a fancy, brand new car.

We drove Mark's van until it literally just stopped on the highway.  It died in motion.  It was made in 1996, and it didn't have a CD player in it, but the radio worked, and Mark could play his old cassette tapes in there.

My car is 6 whole years newer than his was - mine is from 2002.  It has a CD player in it.

Since Mark's car left us for that big highway in the sky, we are on the hunt for another one.  We'll do a car rotation, because our deal is, the one who drives the kids around the most, gets to drive the newest vehicle.  The new car will be "mine" and Mark will drive the one that is currently mine.  He'll finally get to play CDs in the car.

So last night I went to a car dealership in a neighboring suburb, to see a used minivan Mark found online that filled our one requirement (a built-in DVD player) and was priced agreeably.  It was manufactured in 2008 and shiny red.

And I was BLOWN AWAY by the features of this five year old car.

It has dual DVD players with wireless headphones.  Touch screen controls for the radio and CD player, satellite radio capability.  A rear-view camera, that shows me exactly what is behind the car when it's in reverse.  A mirror separate from the rear view mirror specifically for seeing what people in the back rows are up to.

When in park, I can play a movie right in the front, on the touch screen.  I can load an ebook to it, and it will read it to me while I'm driving.  There are front and middle row seat warmers.  The middle seats swivel, and you can put a table up between them.

The key isn't like a typical key - it's more like a computer thumb drive.  I've never seen a car key like it.  The two back doors and the back hatch can open and close with the touch of a button from the driver's seat, or from the remote.  The back row seats flip all the way back into the cargo area, for tailgating.  In the cargo area there are fitted compartments for grocery sacks, and hooks to hang grocery bags on.

And this car is from FIVE YEARS AGO!

I swear, cars built in 2013 must be hovercrafts.