ABA is a little scary

With the start of 1st grade next week (and full days of school), we are cutting way back on the boys hours of ABA therapy.  Both have been in an ABA program for more than 3 years now.

Did you know ABA therapy can be controversial?  I was very nervous about beginning this program, because before I really knew what ABA was, I knew it was sometimes not the right way to go with Fragile X kids.  When I started asking around (i.e., emailing the listserv to see who else had been doing ABA with their Fragile X kids) the first thing I got was a link to an article warning against the ways straight ABA therapy (intended for kids with autism, not with Fragile X) could be harmful.  I had two little 3-year-olds.  I didn't want them harmed.

I did want them to cooperate with the activities of daily living though.  I wanted them to be able to feed and dress themselves.  I wanted them potty trained.  I couldn't imagine how they were going to go to school when they couldn't sit still for more than a nanosecond.

Behaviors were out of control.  Neither of them could do anything without screaming about it first.  I wore earplugs.  Literally.  Mostly just in the car, but sometimes around the house too.  I could still hear, but they muffled the constant screaming quite nicely.

And ABA therapy has been a lifesaver around here.  Zack and AJ have learned, among other things, how to communicate without screaming.  It's wonderful.  And I don't regret a second of the undoubtably 1000's of hours of one on one therapy we've put in.

But it might be time to move on.  To a more classroom-oriented therapy.  With other kids.  In a group.  Socially.

I just stumbled upon this blog called Reward and Consent, that discusses ABA therapy, its history and significance and the pros and cons.  I love it.  I'm going to follow this blog carefully, because three years later, I still feel like I need to stay on top of the ABA program and make sure it's not "harmful."  It certainly wasn't, for us.  But that doesn't mean each parent shouldn't pay close attention to exactly what kind of program is being used on their kids.

Every child is an individual (even if he's an identical twin), who should not be subjected to a cookie cutter therapy program.

Who are all these kids, and why do they keep calling me mom?

I stopped and looked around myself this weekend and felt some shock and awe.  My kids are getting so BIG, right before my eyes.  Big as in, they will concievably be taller than me one day.  Soon.  Probably tomorrow, the way things seem to be flashing before my eyes.

Weren't they babies, like yesterday?  And now all of sudden, they are ... people.

The Art of Brushing

I've taken off Zack's shirt.  I wince as I note a couple of small bruises on his back.  Looks like they must have hurt.  Would have hurt anybody else.  But Zack's sensory system doesn't work like other people's.  These are new from yesterday, probably from wrestling with his brother.  Yet, at no point did he let me know he was hurt.  I have no idea if he felt it at all.

I grip the soft, white, plastic, sensory brush in my hand and begin gently brushing down his left arm, while he stands in front of me, watching the Little Einsteins.  I start at the shoulder, pressing just hard enough for the bristles to bend, and draw the brush down toward his little hand.  He holds his arm out straight for me, but loosely.

He wiggles around a little.  He spreads his fingers out though, when I do the palm of his hand.  I imagine the brush in my hand is actually a paintbrush, and I need to spread the paint down his arm, evenly in a straight line.

I switch to the right arm.  Zack is cooperative.  He likes the brushing.  I focus on keeping the pressure steady, taking deep breaths myself.  The act of brushing is soothing for both of us.


I imagine that all the stress, anxiety, and tension in his body is just under the skin.  And by brushing, gently, slowly, deliberately, always in a down motion, I can extract the stress and anxiety.  I can release the tension for him.  In my mind I see the tension come flowing right out his fingertips, like five long, shiny ribbons.

I brush both Zack's legs while he stands in front of me, tenderly, but also firmly.  I begin at the hip and leisurely draw the brush down over the thigh, knee, calf, ankle, and end it over his foot, bringing it just down to ends of his toes.

Zack fidgets a little.  He can't help it.  He is almost never still.  But he's more still for this brushing activity than he is most of the day.

I cover the left leg with my imaginary paintbrush, and then begin with the right leg.

In my mind's eye I see ribbons of stress, laying all over the carpet, in a rainbow of hues.  Zack is free of them.

The Escalator Ride

We went to the mall this morning, just to walk around.

If you go before any stores open, it's nice and quiet and empty.   A great place to let little monkeys run around.

After the stores opened, Aliza wanted to look in a little toy store.  It's right by some escalators.  Which are basically an amusement park ride, as far as AJ is concerned.  He did his imitation of a puppy (i.e., whining) and strained toward them, as I held hard to his hand.

Then I decided, what the heck.  Stores had only been open for about 10 minutes.  There was nobody around.

I told Aliza we were going to ride the escalator.  I can see inside the toy store the entire time.  So she can stay there and look at toys.  I abandoned our stroller at the top of the escalator and took a boy by each hand, and we stepped onto the down escalator.

AJ squealed and laughed, as if we were on the rollercoaster.  As we got close to the bottom I warned the boys -

"okay we're almost at the bottom, get ready."

And AJ looked down where the escalator stairs magically flatten out and disappear, and he waved said wistfully "buh- bye, stairs.  buh-bye."

We turned around and went right back up.   The "up" was just as exciting as the "down."

We rode the escalator ride three times, always watching the stairs disappear, waving and telling them "buh-bye, stairs!"

Seriously, could that kid BE any cuter?

San Diego is the most awesome place to have a meeting

As I mentioned in this post that was mostly pictures, this past week I had the amazing opportunity to attend one of the Fragile X Patient Advocacy Advisory Board Meetings with Seaside Therapeutics. 

They held meetings in Philadelphia and in San Diego and I got to go to the one in San Diego because that's the side of the country Minnesota landed on, and because God knew that that way I'd get a chance to see my cousin who lives in San Diego, who I haven't seen in 10 years.

A representative from each of the local Fragile X groups, called the LINKS groups, was invited to attend.  At the meetings we brainstormed for ideas about how to increase awareness of clinical drug trials, and get more people involved in the trials.  We also chatted each other up about how to reach the less active community members and make sure they are supported and have the resources they need.

Oh, and I was treated like a VIP.

I was escorted from the airport by someone who insisted on pulling my luggage for me and loading it into the LIMO (not a stretch one or anything, but still...) and then I was driven to the hotel in style, views of the San Diego Bay on the right and city skyline on the left.   I don't mind telling you I totally enjoyed that.   I would make an excellent super-rich celebrity. 

All that was missing was autograph requests.

View from my hotel window.

Another view from hotel window.

The meetings were spellbinding.  Have you ever gone to a movie that was so good, you were afraid to go to the bathroom because you didn't want to miss a crucial part of the plot?

I was afraid to leave to go to the bathroom during these meetings.

I learned a lot about the clinical drug trial we're going to take part in. I thought I knew a lot, but I learned more. Some of the information I got gives me pause, but none of it makes me not want to do the drug trial. Many of the people there had children already taking the trial medication and they had riveting stories to tell of how their children have responded to it.  Stories about how their children acted ... like regular kids on this medication.

While they were describing the totally typical, ordinary things their kids are now able to do on this trial medication, things that are like miracles, things we all never thought our kids would do, all I could think was, so when my boys are on it, I can expect to burst into tears of joy at least once a day.

I can't wait.

I met such incredible people from around the country.  I met Pat from Seattle, who has six children, three with Fragile X, and who just found out she has FXTAS (an adult onset neurodegenerative disorder).

I met Kelly from Omaha, who has an older son with Fragile X and a younger one who is unaffected because she used an egg donor.

I met Elizabeth from New Mexico, who says she has a very small local Fragile X group.  It consists only of her own family members.  She doesn't bother to have Fragile X gatherings anymore, because they "already see each other at Thanksgiving."

I met Rose from Wisconsin.  Jen from Indiana.  Mary from Montana.  Donna from Kansas.  Laurie from Houston.  And Missy and Holly from Illinois (well, I already knew Holly!). 

All of us Fragile X family members, plucked from various parts of the country, brought together to represent our hometown and state Fragile X communities, honored and blessed and celebrated.

After the meeting I got to meet up with my darling cousin Andrea.  (She's from the non-Fragile X side of the family.)  Without going into too much detail as I know she wouldn't want me to, she needs a weekend of pampering much more than I did.  More than anyone else I know, offhand.  She takes care of a lot of people.  Some of them are people who should be taking care of her. 

We haven't really known each other since we were kids.  And growing up has changed us.  While there are undertones of stress and drama and serious grown-up stuff, she is still definitely the kid I knew and loved.

I'd post the picture of the two of us, but we let her daughter take it, and let me just say this; when a child takes a picture of you, it's not going to be from the best angle.  All I can see are double chins.  And other double things.  Definitely only let tall people take pictures of you.

I hope and pray one day soon she's able to get a weekend away to just play.

Blog Gems - Airing the Archives...

In between San Diego updates I'm going to do a quick blog hop today - currently sponsored by this blog:

The Squashed Bologna:  A Slice of Life in the Sandwich Generation

which I love.  Great special needs blog.  Very insightful and fun.

Blog Gems was created and begun by Jen from The King and Eye, who says:

"How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!"

So this is my Blog Gem for the day.  The theme is Endings and Transitions, so I chose the post I wrote about the boys' last day of Kindergarten.  Here it is.

Last Day of Kindergarten - Comparing Them to Other Kindergarteners

You stay classy, San Diego

I am outrageously fortunate.

I mean it's ridiculous, that I got to come to San Diego, stay in a gorgeous hotel, meet and get to know a bunch of other Fragile X moms and dad and grandparents, and gain and share information from Seaside Therapeutics, a company that is working to improve the lives of people with autism, Fragile X, and other neurological disorders.

Did I mention it's gorgeous in San Diego?  For about the first 24 hours I was here I couldn't wipe the silly, tickled grin off my face.  I can't even wrap my head around the fact that I got to stay in a place where palm trees just grow right in the ground.

Okay I've been in places where palm trees grow right in the ground before.  I've been to Texas a few (dozen) times, and I've been to Mexico and the Dominican Republic.  They were all exotic vacation paradises.

So I guess, palm trees signify exotic vacation paradises to me.  I'm sure it's orchestrated that way.  They plant the palms all over the hotel landscapes and along the highways to and from the airport, so those of us from colder climates will feel like we're in paradise.  I'm sure it's a conspiracy.

It worked on me.

Ditto for giant cacti.  They make a good icon for exotic paradises too.

There are more pictures and plenty more to say, but right now I have to close and get packed up. 

To be continued.....

Leaving on a jet plane, and more brushing!

For the next couple of days, I'm going to give up my at-home juggling act and turn it over to my parents and Mark, while I will be in sunny San Diego, participating in a patient advisory panel for Seaside Therapeutics, the company that is working on several medications that will help Fragile x patients.

Then after the panel meetings, I get to visit with a cousin I haven't seen since she was pregnant with her daughter.  Who is almost 10 now.

Aliza is beside herself with anxiety over my leaving.  How do moms with attached children ever get away at all?  She sobbed last night as if I were planning a six-month sabbatical.  Instead of a quick 48 hour trip.

But, about the brushing - it's going really, really well.  I tried it a few years ago and it didn't seem to make any difference, and I really got the feeling I was bugging him, so I quit.  But now - now it rocks!

I've got to make sure my parents and Mark know to keep the brushing up with Zack, because he's loving it.  I'm not sure whether it's calming for him - there's still a lot of screaming and pinching - but it's definitely making him happier.  I finished brushing down his arms and legs this morning while getting him dressed, and he picked up the brush (carefully by the sides, so his fingers weren't touching the bristles) and handed it to me.

I asked him "Do you want me to brush you some more?"  "Yeah," he said.

So, we'll do whatever makes him feel better.

AJ had his own little meltdown a couple of nights ago, I think resulting from the combination of not getting his anxiety meds anymore, and the emerging 6-year molars.  I'm going to have my folks give him some Motrin.  He gnaws on his fingers and/or a chewy all day long.  With all that stuff in his mouth he can't talk clearly, and if he can't talk clearly he can't very well respond to speech therapy, so they were trying to get him to at least get his fingers out of his mouth, and he just couldn't take the pressure.  He burst into crocodile tears.

Once he sat down with mom and watched his favorite Little Einsteins video he was giggly and fine.

AJ is my delicate little flower.  They are going to have to be very gentle with him while I'm gone.  And keep up the Motrin.

Therapy, sociability, and aggression, oh my!

At the Fragile X picnic this past weekend, I noticed that my friend's son Timothy, almost 6 years old with Fragile X, was so social.  He played catch with the other kids.  Just jumped right in and hung out with them.  He was such a little joiner!

Zack and AJ, on the other hand, either took off for the park where they could play alone, or stayed glued to their DVD player ignoring everyone and everything going on around them.  When Aliza and the other kids started blowing bubbles, AJ did go over to check that out briefly, but he went right back to the movie.

Now, I brought the DVD player specifically because I knew it would keep them busy and entertained.  I knew I would be pretty busy greeting everyone and making sure everyone felt welcome and was having fun.   I knew that if they had their movies, it would be easier for my mom and dad to keep track of them.

But I so wished they would have played with the other Fragile X and nonFragile X kids, like Timothy did.

My boys' daily routine is different than Timothy's.  Zack and AJ get around 6 hours a day of ABA therapy, one on one.  Timothy has 4 hours a day of classroom style therapy and spends some time in daycare.

It could also be the fact that Zack and AJ are twins, and have each other to play with and lean on.  They night not need other people as much as a singleton might.

I know, I know.  I shouldn't compare them.

All I know for sure is, I was jealous that Timothy was out there, participating a little bit in some fun with other kids, and my boys didn't even appear to notice that other kids were there.

Zack is having such a hard time lately.  His aggressive behaviors are really intense.  We are really feeling the loss of the Tegretol.  I am worried about him starting school with this level of anxiety.  I wish there was something else I could give him right now, but we can't add any meds if we want to be a part of the clinical trial for Arbaclofen. 

I think today I'll try brushing him.  I haven't done that in awhile.

Brushing is part of a sensory diet, with a plastic, surgical-type brush that looks like this. --

You rub the brush methodically and briskly over the arms, legs, and back.  It is supposed to help them stay calm and focused.  For more information on brushing, click here.

Our Fragile X Picnic

When I got up yesterday and saw that it was raining, my first feeling was one of indignance.  How dare it rain today - the day of our Minnesota Fragile X picnic!?

I didn't worry about it for long.  Because there's no better group than the Fragile X families to handle unexpected surprises, like rain during a picnic.  I kept the faith that everything would be fine.

And sure enough, by picnic time, the skies had dried up and the sun smiled down on us.

I was distracted with getting to know people and didn't get around to counting, but my dad said he counted twice and and came up with 50 people.  Several of us were having a great time greeting old friends, and meeting new ones.

Some were seeing others affected by Fragile X for the first time.

Some came from just down the street.  Others drove for hours to get here, coming together to share our experiences with Fragile X.  Our joys and pains.  Our children, grandchildren, moms and dads, cousins, aunts and uncles.  Because Fragile X is an extended family thing.  It's not something that just involves children.  The effects of Fragile X spiderweb across family trees and generations.

And yet, we are all just regular people.  Regular families, coming together to enjoy each other's company and to share food, conversation, and sunshine.  Were it not for the banner, labeling us as a group brought together by Fragile X, we could have been any group of people having a picnic.  Because that's what we are first - just people.  We're not defined by that one little gene, yet we are drawn together by it.

Online friendships can be so enlightening and valuable, but there's nothing like meeting those virtual friends in the real grass, trees, clouds, rain, and sunshine world.  It's the reason the International Fragile X Conferences are so popular.

We don't have to go that far to find Fragile X friends, though.

"Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one."

~C.S. Lewis

Summer Fun Photos!

Summer Fun Photos linkup!

Over @ Things I Can't Say

There are prizes to be awarded in this link up, but I'm not sure what they are.  I'm trying to save up for an ipad, so all I want is cash.  Cold, hard cash.  If the kids are insanely well behaved for the entire rest of the summer, I might let them see it once or twice.  But it's going to be MY ipad, because they are in the process of destroying my laptop.

Anyway, here's our fun photos of summer 2011........

The bunny ears comedy routine is mostly lost on my boys, but Aliza does it anyway.

He can see The Wiggles much better from up here!

Pre-tweens being silly.

Not sure what happened to the "filmstrip" effect on this one.

Monkeys need naps too.

There are ducks down there somewhere.