The Special Needs Rat Race

I'm tired of it.

Ever since they were diagnosed with Fragile X, seven and a half years ago now, (or at least, ever since I came to terms with the diagnosis), I feel like I've been racing toward something.  If we couldn't have a cure immediately, we were going to make sure we had the next best thing - whatever that was.

We tried all the proven therapies and some of the experimental and controversial.  We tried most of the medications, both FDA approved and common, and one still in trials.  Whatever people were telling me was the best and most effective, that's the direction I'd head. 

Our little babies weren't  getting any younger.  Brains just become harder and harder to mold as they age.  I couldn't see any point in spare time.  I tried to fill most of the boys waking hours with some kind of therapy, ever since they were eleven months old.  Now they are eight.  We've done occupational and speech therapy at school, Courage Center, and Fraser.  We had ABA therapy in our home for a little over three years.

Around two years ago, we had to take a break from our ABA therapy.  Not because we wanted to, but because the insurance company wanted us to.  Seems that if the data doesn't show a significant improvement resulting from therapy, the insurance company forces a "break" which makes you reevaluate the process and figure out whether it's the best course for this child.  As much as I understood why, I was not okay with it.  Not making progress should initiate stepping the therapy up - increasing hours or intensity or both.  Not backing off.

But the insurance company did decide.  Since they wanted Zack to take a break, AJ took one, too, while we looked into going back to have therapy at Courage Center, which ended up being a good move for us.  We did need a break from ABA.  Not just Zack.  All of us.  Hosting therapists in our house for eight hours a day was wearing on us.  It is easier not to have to bring the boys out somewhere for therapy, but the nonstop rotating door of therapists was hard too.  However I'm not going to say "if the insurance company hadn't made us take a break..." and give them any credit for it, because like Mark likes to say, if ifs and buts were candy and nuts, we'd all have a Merry Christmas.  I'm not sure what that means but I think it refers to the irrelevance of saying "if."

Anyway, we've spent the last seven years cramming in as much therapy and support and help as I could.  Forever, or until I saw a significant change in their capabilities.

And I'm burning out.  I'm tired.

After we wrapped up our ABA routine, I started thinking about trying out a new therapy center I'd heard was really good.  I filled out all the necessary paperwork to get us in to Fraser, and secured our place on the waiting list.  Six months later, in November of last year, we finally got the call - our boys had reached the top of the waiting list and could be evaluated.  The evaluations took the better part of a day, and then we shifted to a new waiting list to secure therapy appointments.  That wait took another four months (while we were waiting we had some therapy at Courage Center).  So, ten months after the whole process began, we finally started therapy at Fraser.  Unfortunately they couldn't get us in to the location closest to us, so we had to drive into Minneapolis for 5 and 6 PM appointments.  I had to entertain one boy in a crowded, loud waiting room for one hour and then the other.  The appointment timing couldn't have been more brutal.  It directly ran into rush hour and lasted into the start of our bedtime routine.  And I swear, every other week, it rained.  Or that could have just been the way it seemed.

So we are taking a break.

I'm careful not to say quitting -- we will be back to running the therapy circuit again before too long.  And of course, they are getting speech and occupational therapy at school right now, so it's not like there's nothing.

We are just going to pause long enough to catch our breaths.

My son kicked a horse in the face.

My son kicked a horse in the face this week.  How did the start of YOUR summer go?

We had our first riding session at Erik's Ranch on Thursday in Belle Plaine, about 25 miles outside the Twin Cities.  I was nervous for it because we are a week into the downward titration off Arbaclofen, and the boys are both exhibiting more anxiety.

The people at Erik's Ranch, though, are amazing with kids with autism.  I can say that after only one visit, because Zack gave them quite the challenge.

AJ was nervous, for sure, but AJ only fought back mildly when the trainers and assistants helped him up on the horse.  He whined for the first 20 minutes or so but then was relatively okay. He never lost his fear - his voice shook when he'd look at me and holler "bye, mom!" and he was very teary.  But when I held up the camera he gave me a tiny smile and said "Cheese!"

Zack took a little longer to adjust.  I sat on a bench with him, and struggled to hold him as he struggled to escape me and pinch and kick anyone within reach.  Sedan walked right up to us - the lovely, gentle, friendly horse Zack was going to ride.  He seemed very calm and curious about us.  I petted his nose and told Zack "See, gentle."

Zack reach out tentatively and sort of smack-petted the horse.  I yanked him away before he could hurt Sedan.

See, Zack was petrified.  And I held him, forcefully, in close proximity to the horse.  I was trying to get him acclimated, but this is what Zack does, when he feels petrified and threatened.  He lashes out defensively.  It doesn't seem like reasonable behavior to others because everyone knows horses are gentle and harmless, right?  But try and imagine Zack's terror.  In his mind, that horse might as well have been a rabid hyena.

Another trainer was right there with us, and we chatted a little, while I wrestled with Zack, and he fought to escape me.  For a moment he was still, and the trainer and the woman holding the horse's bridle and I all looked away, over toward where AJ was riding.

"Look, Zack!  AJ is riding!  He's doing it, and he's having fun, look!"

And Zack twisted in my arms, threw his leg into the air, and swiftly kicked that horse right in the nose.

I grabbed him.  He never actually got away from me.  Well, one leg did.

Sedan jumped back several steps, snorted, and stomped a little.  The woman holding his bridle talked to him and comforted him, and he was fine.  Just startled.

But oh, goodness.

Then one of the lead therapists, who had been walking with AJ, came over and took charge.  A couple of them took Zack for a walk, to get his nervous energy out and take a little break. 

When they came back, they asked me to wait outside the barn while they got Zack up on the horse, and I happily and quickly obliged.  Because in school and at therapy, through one of those I-can-see-you-but-you-can't-see-me windows, I've seen just how great the boys can do once I leave the room.

For some reason when I'm there, they are all "oh help me, I can't do it alone, I'm scared and need my mommy!" But as soon as I'm gone they are all "fine, now that she's gone I can stop putting on the show, so let's get down to business."

And Zack rode the horse that just a few minutes earlier he'd kicked in the face.

He rode for a few minutes and then said he wanted to get down, and they helped him down and went for another walk.  Oh and by the way, when I say they went for a walk, I mean, they went for a jog-skip-bounce.  Because Zack hardly ever just walks.

And then they got him up there and he rode the horse, again.

And this is why I have to say, Erik's Ranch has the most wonderful and amazing people working there.  We will be going every Thursday through the summer, and hopefully by the end, they'll be riding the horses enthusiastically.  Instead of with unbridled panic and terror.

Giving Myself a Pep Talk

Excuse me while I have a little chat with myself. I've been stressing over something I shouldn't be.

What happened is, I finally got the call from Frasier autism treatment center that Zack and AJ have reached the top of the waiting list.  The list they've been on since last June. We have our first evaluations there in a couple of weeks. This is kind of a big deal - kind of our first big venture into a therapy regimen since quitting ABA therapy about a year ago. It's very exciting.

And I've been a little afraid to be excited for it.

This will be about the 4th kind of therapy we've tried.

My mind rolled itself up into a ball and went right off a cliff after I got the call from Frasier. Like every other new therapy and medication and doctor we've tried, I was so immediately so excited. We waited for months for this. I'd filled out yet again stacks of forms. Twice.

Exactly like I did before we started the STX209 drug trial. And before we started speech and occupational therapy at Courage Center. And before we started the intense ABA program.

When we were thinking and talking about trying ABA, the head honcho, Nancy, was full of statistics that promised amazing results from ABA. She said a huge percentage (I don't remember exactly what the number was) of the kids treated with their ABA therapy were able to attend kindergarten without any aides or help and with few, if any autism symptoms.

I knew that wouldn't be us. Fragile X is genetic. It can't be "therapized" away. It can be improved upon, assisted, but it's always going to be there. I told Nancy this. We talked a lot, several times, going round and round about it. In the end she convinced me that ABA would be beneficial.

And it was - I admit it! They really have better control over themselves. They express themselves better. They follow rules. ABA definitely helped the boys. But like a lot of things we've tried, it ended without some major goals being realized.

I have to focus on remembering all the good things they got from it. I knew it wasn't a cure.

It was the same thing with the drug trial. I tried to keep my hopes in check and realistic, and while the drug has been helpful and definitely has benefits - it wasn't as mind-blowing as I had hoped.

Admittedly my expectations were way out of whack. The day we gave them the very first pill, we braced ourselves and stared at the boys, knowing it was insane but half daring to hope that that day would be the day that changed everything. The proverbial "first day of the rest of their lives."

Okay, so let's try to be completely honest here. Would I do ABA again, knowing what I know now? I think so. Maybe. I do know it was good for them at the time.

Would I do the clinical drug trial again? Absolutely. No question.

So I give myself permission to be excited and anxiously anticipating the therapy at Frasier. It will be a good thing.

It feels sometimes like I've been chasing something - a perfect treatment, a cure, whatever - ever since we got the Fragile X diagnosis. We've tried so many different medications and therapy routines and styles, and it's easy to look at all we've done through the past 6 years and think - "all that work, and they still have Fragile X." Yes, they do. It's in their DNA. They always will have Fragile X.

But hopefully they can live with less anxiety, better sensory perception, and fewer upsets. I guess that's why we do all that we do.  Why we keep trying different things.

The only Halloween photo I got where everyone is facing the same direction.

How much is too much? Ryan knows.

I am wondering lately whether we are doing too much.  This is the boys' weekly schedule.

• School 5 days a week (usually, anyway.  It seems like there are so many late-start days, professional days, holidays, conference days, and random-for-no-good-reason days off school lately)
• Courage Center for speech and occupational therapy 3 days a week.

Okay so it doesn't make an impressive bullet list.  Only two things.  But it leaves them very, very little time left for just hanging out.  I haven't given them a lot of free time in the past because they didn't do constructive, educational, developmentally appropriate things with their free time.  They didn't play, like other kids.

If all they were going to do was yell and stim in front of the TV or computer for hours -- well, I wasn't going to give them a lot of time to do that.  So I filled their schedules with beneficial things.

The past couple of weeks though I find myself being relieved whenever we could cancel one of their appointments.  And I think the boys feel the same way.  Last night at Courage Center, while waiting his turn for occupational therapy, instead of playing his favorite games on the iPad, AJ climbed into my lap and put his head on my shoulder.  His therapist reported that he wasn't terribly cooperative.  He sat or stood in the corner a lot and didn't liven up until she said he could be all done, and go back out to his mom.

 And you remember how Zack was on Monday.  He was very overstimulated when we left.

I wonder if I should be giving them more time to themselves.  My manny, Ryan Gosling, is thinking the same thing.

See the other Special Needs Ryan Gosling photos over here at Adventures in Extreme Parenthood, written by the girl with the most fun name ever, Sunday Stilwell.  You can also find them by hunting for the Twitter hashtag #SNRyanGosling.  And thanks to Ryan for being such a good sport.  Not that there's anything he could do about this.

Late Night with AJ

If it's true that everybody wants to be friends with the funny guy, AJ is going to be very popular one day soon.  The kid's a stitch.

This afternoon at Courage Center, AJ went back to work with Zack's therapist.  She doesn't know them well enough to know the difference, and I wasn't paying attention with who went with whom.  So no one noticed at first.  The therapist did get suspicious within a couple of minutes though, and she asked him "Are you Zack?  Or are you AJ?"

And AJ replied "I Zack."  So the error went on for a few more minutes until we all figured out what he'd done.

Then tonight after dinner, AJ was watching something on the iPad.  He left for a couple of minutes, and the iPad shut off automatically, as it tends to do when it's left idle.  This happens at least a dozen times a day.

AJ returned, looked down at the black screen, and exclaimed in mock horror, "Oh no, it's gone!"

Autism vs. the Autism/Fragile X Combo Pack

It's such a time of change around here.  I feel like I just go with the flow every day, and I want to be flexible like that but I feel so out of control.  I'm tired of being reactive.  Just one day, I'd like to not have to react to something unexpected.

We are still getting used to the idea that our ABA therapy is probably coming to an end.

Three and a half years ago, when we started this program, Nancy was full of sales pitches that included strong claims of how this therapy could "cure" them.  Alright, she didn't say the word "cure."  But she bragged quite a bit about statistics of kids who went through their therapy program and then went to school not needing any aides or support of any kind.  Kids who were able to be mainstreamed in the typical classroom, keeping up with their peers and their studies.  Showing no signs of autism.

And while I try to have high expectations, I knew this was not going to be the case with us.  And I tried to tell her that.  The autism/Fragile X combination was going to make "graduating" from the program a lot harder.  Her statistics didn't include kids with Fragile X.  I also suspected that ABA therapy would be very good for the boys, though, and that while they most likely wouldn't be entering school without aides, it would definitely help them.

Still, it's sad to me that they will be quitting the program, rather than graduating from it.  It's the same way we ended things at Courage Center - our insurance stopped wanting to pay for it, because they weren't making enough progress - so we started the ABA program.  This time it's not because insurance doesn't want to pay for it, but history is repeating itself - therapy is ending because they (well, only Zack, really) aren't making enough progress.

My poor little Zack.  He is getting used to the full school days, though.  It was a slow transition because he was sick a couple of days and had to stay home.  Actually everyone's been sick.  I'm the only member of this household who hasn't been on antibiotics in the last month.  Well, me and the cat.

September has been such a busy, scattered month.  I hope things settle down soon.

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.

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.

Social Conversation Speech Therapy

Now that the boys have mastered labeling objects

"what's this?" 
"It's a chair."

They are working on using speech in regular conversation.  It's called the Social Conversation program.  We ask them questions like

"What do you say when someone goes away?"
"Bye."


"What is your cat's name?"
"Lily"


"How does that taste?"
"mmmmm"

And then there's fill-in-the-blank phrases and song lines, like

"head, shoulders knees and -"
"toes"

Some of them they are really good at.  Others not so much.

Both boys have learned to say "Hi" when someone comes into the room and says "hi" to them.  Then they both have worked on responding to the question "how are you?" with "good."

Zack however has decided that is all just too much idle chitchat.  He'd like to cut it down.  Now when someone comes into the room and says "hi" to him, he just says "good."

I'll get right in his face and say emphatically "HI, Zack."  And he'll give me the quickest nanosecond of eye contact and say "good."

It takes 2 or 3 tries to get him to say "hi" instead of "good."

This morning when I came downstairs I said "Hi Zack."

And Zack, without looking away from You Tube, said "Hi.  Good."

Well, that's progress!

Zack Loves Aliza/Government Shutdown Update

Zack has decided Aliza is the greatest thing since Cookie Crisp.  He was in visiting with her early this morning, before she got up.  I went in to check on them and she was laying down in bed, he was sitting on the bed next to her.

"He's okay, he's not bugging me."  She told me.

"What are you guys doing?"  I asked.

"We're talking.  Zack's saying something about being a king, I think."  She said.

This is my boy who would just as soon watch the Wiggles as do anything social with anyone, including his twin brother.  So this made me smile.

Then we went out to a park this morning before it got too hot, and it became clearer what Zack was really interested in.  I don't know if it's the fabric or the print, but for some reason, he loves the shirt Aliza has on today.

We thought he was going to push her on the swing, but he really just wanted to touch the back of her shirt.

I tried to get her to pose by this tree for a pic.  Zack stuck to her like glue.

AJ was always a day late and a dollar short.  Where'd they go?

Is it the cotton shirt, or the butterflies that is attracting him?

Eventually she got annoyed and sought refuge at the top of the tunnels.

The state government is going to have to shut down, it looks like, but our therapy will not be affected.  Medical assistance is considered essential.  Thank goodness!  It's not good news for the 1000's of government employees who will be out of work during this time though.  I wrote our state representatives last week, and got a response back from one of them yesterday.

The email (almost certainly a form letter that went out to 100's of us) completely blamed the governor for their inability to come to an agreement on the budget.  I'm going to write her back.  I don't know who is at fault and I don't care, but it sounds like she is being the one who is inflexible and instead of playing the blame game, maybe she should be trying harder to come together on an agreement.  I won't forget this, come reelection time.

Aggression

You'd think after 2 1/2 years of ABA therapy, we'd be compliant, and done with aggression.  And most of the time, we are.  I have weekly meetings with the lead therapists and they tabulate the number of aggressions each boy had from that week (mostly biting and pinching) and the numbers have been way, way down.  AJ actually had his first zero aggressions week.

But today has been rough for some reason, and yesterday wasn't exactly a walk in the park.  I'm not sure what has changed, and it's exhausting to constantly try and come up with a reason for it.  Has anything in the routine changed?  Are there new therapists or teachers?  A change in medication?  Have either of them been sick, or not sleeping well?  Is he hungry?  What is the mysterious reason for this change in behaviors?

At least one of these things occurs practically all the time.  And the reason is Fragile X.  I get so tired of trying to think of what might have caused a behavior.  And trying to figure out what to do about it.  I hate when they ask me.  I want to say, isn't that why you are here?  If I knew what the heck to do with these kids, I wouldn't need a team of 8 therapists rotating through my house every day.  One night this week three of them were here until almost 7:30.  They were training someone, and I had no idea how much I rely on their leaving by 7:00 PM until they were here later.  I was just desperate for them to leave so I could relax, put on my mental PJs.  I mean, with people working in my house all afternoon, I can't really let my hair down, you know?  And I didn't realize how much I need them to leave until they didn't.

There's even therapy on Saturday morning.  I so look forward to Sundays, when nobody comes over!

Talking Zack

AJ is the superstar of speech advancement, lately.  My Zachary is a man of few words.

But the words he does say are meaningful, from the heart, and even show the little comedian blossoming in him.

Yesterday he came upstairs from the basement where he was having ABA therapy, and he outran his therapist by about a mile, shooting past the kitchen where he was supposed to be headed, darting up another flight of stairs and pounding down the hall to AJ's bedroom where he was having ABA therapy.  He slammed AJ's door shut.  Just call him Captain Subtle.

His therapist went upstairs after him, opened AJ's door, and Zack looked over at her, smiled, and said "heh-woh."

It strikes me that this might be one of those "you had to be there" instances.  Maybe you did have to be there to see the cute "you got me" smile and to hear his game show host tone of voice.  I actually wasn't there.  But I've seen the smile, and I've heard the tone of voice, so I can readily imagine how cute it was.

Yesterday Lily got into a cat fight in the backyard -- a neighbor's cat was back there and the two of them yowled and wrestled it out for a few minutes before we spotted them and I broke it up.  Lily seemed fine but she ran downstairs to hide, mostly, I think, just to nurse her wounded pride.  I let her be most of the afternoon but then decided I needed to make certain she was okay, so I ducked around the furnace and laundry area with a flashlight, calling her.  She's a cat that thinks she's a dog -- she usually comes when I call her.  So when she didn't come out and I couldn't even spot her...

anyway I digress.

Zack was back in his little orange chair learning how to "wait" 20 seconds (you can't imagine how hard it is for him to sit there and do absolutely nothing for 20 seconds), when I walked through the room.  I waved at him and he said "buh-bye, mom."  Crystal clearly.

I get so used to hearing babbley-chittery-mumblety-nonsense from these boys, and it's just a thrill to hear real, meaningful, appropriate, clear words come out of their mouths.  Words and phrases you'd hear from a typical boy.  Words that show that they are understanding what they hear, and know the right thing to say in the right situation.  Phrases that show they are getting more social and interactive with people.  All things I took for granted that kids learned, before I knew these boys.

And my AJ -- well he doesn't just watch Wiggles videos on You Tube anymore.  Today he played a Moose and Zee game on http://www.nickjr.com/ where he had to match up the lower case letter with the upper case letter.  And he could do it.  And he liked it.

Well he liked it, because after he played one round of the game, I let him go back to You Tube.  But only a few times did I have to point out to him which upper case letter went with which lower case one.  And he came back to play the game again, on his own accord.  I figure, if he's going to use the computer, might as well get him to play an interactive game with it so it's at least a little bit educational.

And now I have to go back downstairs and continue the search for Lily.  Haven't seen her in about 22 hours now.  Starting to worry about what I'll find when I do find her.