How did you get here, Mrs. Rogers?

For years now, Mrs. Rogers Neighborhood has been one of the Fragile X blogs in the list at the bottom of this blog.  Mrs. Rogers, Cindi, is mom to two sons with Fragile X, both in their 20s, both not mildly affected.  (See what I did there?  I avoided having to say it.  Hello denial, my good friend.)

Like it's namesake, Mrs. Rogers Neighborhood is a place where things run smoothly and by a comfortingly predictable routine, which makes life manageable for two boys living with all the challenges Fragile X can toss their way.

In addition to writing a blog Cindi has presented at the International Fragile X Conferences for years, providing ideas and tips for helping people with Fragile X and other cognitive disabilities learn to live as independently as possible.  She's amazing, she's brilliant, she's relatable, and she's completely crazy.  That's what I thought, for awhile, because her methods for organizing her sons' lives is so ... well, methodical.  (I feel like I can call her crazy because she knows I love her and mean it in a good way.)

Meticulous schedules.  Remodeling and additions to their home.  Vacationing in "Rocket," their RV, so they can basically bring the comforts of home everywhere they go.  I don't think she's ever seen a problem she didn't stare down and beat into submission.

She is so together.  She is so self assured.  How did she get to be like that?  Presuming she started out a total wreck like the rest of us.  How the heck did she get there? 

I can't wait to read her new book, in the hopes that these questions will finally be answered!

Cindi is a real role model for me, not just as a mother to children with Fragile X but as a speaker and educator, and now an author!  I was green with envy when I saw that she had a book out - but quickly realized, mine isn't ready because our story isn't finished.  I'm still in the thick of it.

Check out Cindi's story, available on Amazon! I plan to bring mine along to the conference in Anaheim this summer, so I can ask her to sign it.

Adventurers

 

How can Memorial Day be only one week away?  Spring just started a week ago.  The leaves on the trees are barely beyond buds.  And we are as joyful as ever to welcome Spring.

 

Aliza, AJ, Jocelyn and Grandpa went exploring down the creek.  AJ became a little nature boy; he threw rocks and dodged trees and brush like he'd just gotten off an expedition with Louis and Clark.

Zack didn't want to go, and we didn't force him.  I go back and forth on that one.  I don't know whether I should make him at least try some new experiences, or let him decide whether or not he's ready to try things.  AJ is always more than ready to follow Aliza anywhere.

They went on a long trek - long enough to make their parents start to become uneasy - but they were all fine and they had a wonderful adventure.  I underestimate AJ's tolerance sometimes, in the effort to protect him from anything that will make him anxious.  He was worried about a couple of blisters on his feet from the new water boots, but he'd probably still be out there if it were up to him.

Moment of awe

I had a moment of awe at AJ's cognitive ability this morning.

When your child has Fragile X and you watch him grow up and struggle with things like holding a spoon, unlocking a door, and putting his shoes on the right feet, you carry that with you when forming expectations of what other kinds of cognitive things he might struggle with.

You don't want to have these preset notions and somewhat lower expectations but we are only human, right?  We form ideas about people based on our experiences with them.

Based on my experiences with my sweet AJ, I never would have expected what I saw this morning.

One of his current favorite apps is the ABC Mouse alphabet app.  It's very basic and preschoolish - it's a simple video and song about each of the 26 letters.  When you first download it you get the videos for A and B, and you have to watch the videos all the way through to earn "tickets," and after 50 tickets you can choose another letter video.  It didn't take long to get C.  I turned the thing on and played it every time I saw it, just to get the tickets at the end.  We got D in much the same way.

The videos are very fun and catchy tunes, but they are a good 3 minutes in length, which is about 2 minutes and 48 seconds longer than AJ's attention span, so he keeps starting them over and over, only playing the first few seconds of the video.  I told hm over and over, you have to let it play all the way to the end to get the tickets, but he was obsessed with watching just the first part.  And I didn't really think he got the concept of earning tickets to get another letter video.

This morning AJ happens by, iPad in hand as always, and I hear the strains of a new letter video.  It's playing "E."  I grab it from him and look - sure enough, there's the video for E.  Apparently he earned tickets and downloaded it without my help.

"Wow, AJ!  You got another letter all by yourself!  Great job!"

I sat down with him and encouraged him to show me the E video.  But as usual, his patience ran out just a few seconds into the song.  He put his finger on the bottom scroll that shows how much of the video remains and fast-forwarded it to the end.

"No AJ, you won't get a ticket that way.  You have to watch the whole thing..." I began to tell him.  He pushed my hand away as I tried to stop him.

The E video ended within 10 seconds.  AJ and I watched as one ticket popped out of the slot onscreen.

OMG, do you know what this means?  You don't have to watch the whole 3 minutes of video to get a ticket!

But even more jaw dropping....  AJ FIGURED THIS OUT ALL BY HIMSELF!