The Last Resort

Not long ago, while working on my memoir, I was thinking about a story that appeared in the news back in 2006, shortly after the boys were diagnosed with Fragile X Syndrome.  It was about a woman in the United Kingdom who forced her 12-year-old son with Fragile X off a bridge, and she followed him, both falling to their deaths.

I had only known about Fragile X for a couple of weeks.  I didn't know yet how it would envelope our lives.  But here was a woman who had felt things were so hopeless for her son's future that she took him away from the world with her.  She despaired when she saw a world that, if he were left without her protection, would abuse and torture her vulnerable son.

I have to say, that didn't fill me with confidence in our future.

Now - seven years later - I see a story in the news like this one - about Kelli and Issy Stapleton - the mother who attempted to kill herself and her autistic daughter - and I can easily understand what Kelli's mindset might have been.  Her daughter was aggressive.  Mostly Kelli took the brunt of the physical toll, because she placed herself there - between her daughter and the world.  She did that because she knew that most people, and I mean, 99 out of 100 people she came in contact with, didn't understand Issy's aggression.  99 out of 100 people see aggression and think, violence.  Intent to harm.  Being a bully.

Issy' aggression (I am guessing - knowing she has autism, I'm making an educated guess), like my son Zack's, is more about self-defense.  Self-defense against forces that those of us who don't live inside her or Zack's head don't see.  Defense for themselves against themselves, a lot of the time.

If you see someone with autism hitting himself in the head, you might think "oh that poor person, so tortured by something inside him or herself that I can't see."  If that same person hits another person in the head, you are more likely to think "What the crap?  He didn't do anything to you."

An incredibly difficult concept, I know.

Another great example that helps identify the emotions that might be swirling through a special needs mother's mind is the book My Sister Dilly by Maureen Lang, an author who greatly inspires me.  It's about a woman who tries to kill her severely disabled daughter after resources run dry and she loses hope.  It doesn't give excuses.  It simply tells the story of that mom's fall into the pit of despair, and how both she and her daughter survive it.

Kelli has spent Issy's life protecting her from a world that does not understand her and probably wouldn't try to, before condemning her for her aggression.  And when she couldn't do that anymore, she did the only thing left she could think of to protect Issy - she tried to take her away from this world.

I don't think she thought she was hurting her daughter.  I don't think she saw it that way at all.  I think she thought she was saving her.

I get how insane that is.  I get how wrong it is to kill.  I just understand, I think, maybe better than some, where Kelli's mindset might have been and what her reasonings were.  I can easily imagine what her life with Issy was like.  There have been times when, to keep Zack from lashing out at others when he was overwhelmed and/or overstimulated, I permitted him to chomp down on my arm.  I've put myself between him and the clueless world.  I want to protect him.

I am deeply thankful for the help I've received along the way, because I know that is what separates me from Kelli.  I haven't reached the end of any ropes.  I'm supported and loved and so are my kids.  I hope a tragedy like this results in better understanding and compassion of people with autism and how much we don't know about what goes on in other families.

Aggression Rears its Ugly Head

Zack had kind of a rough day Wednesday.  Several things happened during the afternoon to take us out of our routine, some of which were my fault for not planning ahead well enough, and some just happened - but in the end, Zack couldn't deal with the wood chips that kept getting caught in his Crocs at the park, so he chased after a kid who had done nothing outside of standing too close by and tried to pinch him.  Then later, he had a tough time transitioning to and from his therapist, and then he got out of his seatbelt on the way home, came up to the front of the van to personally supervise the next video selection.

I got him to go back and sit down easily enough, but then I made a serious error in judgment when I asked Aliza to go back there and see if she could get his seatbelt rebuckled.  I foolishly hoped - in the back of my mind I knew it wasn't likely, but I hoped - that if I paused his video, he'd be able to let her do it.  We were crawling along in heavy traffic on the freeway in Minneapolis, there was nowhere to pull off the road.   So I took a chance and asked her to do it.

And after a short struggle that included me watching in the rear view mirror and uselessly ordering Zack to cooperate, he bit her in the thigh.  And she screamed.

I can't believe I made her do that.  What was I thinking?  He hasn't let her do anything like that to help him in weeks.  He's very aggressive/defensive toward her lately.  Toward everyone, really.  I don't know why I thought that might work. 

He screamed and cried.  She screamed and cried.  I told her to come back up to the front, which she did, and Zack stayed put.  He knew - oh, how he knew he'd done something bad.   In between sobbing and screaming, he would sing a few words of the tune from "Pluto's Bubble Bath," his current favorite Mickey Mouse Clubhouse episode, trying to comfort himself.

After getting everyone settled back down and traffic loosening up, I got over into the carpool lane and burned rubber.  We all wanted to get home.

The new anxiety medication isn't doing much of anything, so far.  I emailed the doctor Thursday.  Within a couple of hours we had it all worked out to increase the dosage.  I am so lucky to have associations with doctors and nurses who know me, and who respond immediately when I call or email.

It wasn't just today.  Every therapy session Zack has had this week ended with a tired looking therapist walking him out, shaking his/her head and saying "that didn't go very well today."

Just like during the Arbaclofen trial I constantly wondered, how much of the boys' progress was due to the medication, I now wonder, how much of Zack's troubles lately are due to the Arbaclofen trial ending?  If he were still on it, would he be having all these anxiety and lashing out problems?  His usual summer sensory issues have been greatly lessened this year, I think due to two things - the swimming pool in our backyard, and the fact that it's been a cooler, less humid summer.

I have to be so careful what I try and do with Zack.  Where I try and take him.  I don't dare go anywhere where there will be very many people.  The other two get bored, staying home all the time.

There have been a few stories lately in the Fragile X group of families who have had to resort to putting their children in a controlled group home setting, when their aggression/sensory defensiveness became more than their parents and caregivers could control.  These stories scare the crap out of me.

They all say that it's one of the toughest decisions to make, which I can certainly imagine.  I know we aren't at that point, but I am afraid it could arrive.  I read these stories and I see parallels in the descriptions of these kids' behavior, and Zack's.  I think about it whenever Zack attacks his sister, or bites me.  Luckily he's not that big, yet.  He's not that difficult, yet.

While it's nice to know I'm not alone, sometimes the way we can share in each others' stories and relate to each other is frightening.

Not only would it kill me to break up the family this way, but separating Zack and AJ would be beyond tragic.  They adore each other and lean on each other.  They worry about each other.  They are like two halves of a whole.

We won't do it.  We won't ever do it.  I have to promise myself that.

We've got to find a medication that helps Zack.  Desperation is setting in.

Aside from trying to pinch the therapists and volunteers, Zack did pretty well at horseback riding last night.

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.

A case of the Augusts, or something else?

I don't know what it is.  It could be a couple of things.

We took the boys off Tegretol.  We had to, because we want to participate in a clinical trial for Arbaclofen, a medication that I've read is having tremendously positive effects on Fragile X kids.  I think this is phase 3.  It's very close to the end of the trial (obviously, or they wouldn't be allowing testing on children.)

And we can't take part in the trial if they are on Tegretol.  We weaned them slowly, on a schedule created by our doctor.

They were taking Tegretol for the pinching and the biting.  And there still was some pinching and biting, so I decided the medication wasn't making that much of a difference, and it would be no big deal to take them off of it.

But now there's SO MUCH MORE pinching and biting.

It might not just be the medication change, though, because it seems like August is like this every year.  Weeks and weeks of hot, humid weather does bad things to their sensory systems.  Staying in air conditioning doesn't help because they need to be out and about where they can release their excess energy.

This is why we swim so much this time of year.  A cool pool seems to offer them some relief.

Arbaclofen is supposed to help with social anxiety.  Which I think is one of the reasons for the aggression.  So hopefully the new, trial medication will help with the pinching and biting even more than the old medication did.

But the time in between might be tough.

It's Fun to Stay at the YMCA

Awhile back I wrote about this great idea I had to bring the kids to the daycare at the YMCA and slowly but surely get them used to it, so that one day I can be one of those awesome and lucky moms who can just abandon their children to the daycare and go have a nice, sweaty workout session.  Last week I started the acclimation process.  Here's how it went.


DAY 1
Had to wait to get into the childcare area while no less than 7 moms were in line picking up their kids. I had no idea I was showing up at rush hour.  We stood in a corner while I wrestled with Zack and Aliza kept AJ from tearing in there on his own.

Got in, explained about the boys and our purpose here, and went to the play/climb/shoot baskets/tumble/slide room (also known as the kid gym).  We were alone for quite a few minutes then a TON of kids came in.  AJ loved it.  Little boys chased each other and fell hard on the tumbling mats; AJ followed them running, and then fell hard on the mats right beside them.  He was all sweaty and red faced and laughing, and it was adorable.

Zack's anxiety was at defcon 5, however.  It was like he was trapped in a house on fire.  I held him as well as anyone could hold a sweaty, writhing, wailing octopus.  I was going to take him out to the hallway just to calm down and leave AJ and Aliza in there, but AJ saw us leaving and he followed.  So we left.

That was Day 1.  Not good, but not exactly unexpected.

DAY 2
So much better!  There were a bunch of littler kids in the kid gym when we got there, and AJ ran around with them pretty well.  Zack bounced back and forth, wringing his hands, in a corner for the first few minutes but then he got comfortable and started climbing and sliding and generally running around.  He really only pinched one kid, who held his arm closely and looked wide-eyed at Zack.  I went over and asked him if he was okay, and he said "yeah, I just have a mosquito bite right here."  Very sweet little boy.

But the best part was that I talked to one of the staff there who said they have several kids with autism who come in, and a couple of them, they have a specific staff person to watch that kid and follow him around and make sure he does okay.  I'm going to have to call and find out how I can get in on that deal.  One or two more times with someone helping us, and I could be one of those moms who gets to drop kids off at the childcare and go upstairs and work out!

It's so humid that my camera lens fogged up.  And yes, Zack is wearing one blue Croc and one black one.

The boys have been working in therapy on playing together in the sandbox - and this weekend they did it all by themselves!

The "Bad Zack"

Zack has caught up to his brother, and can run the laptop.  He's so tickled with himself and we're thrilled, of course, that he's found a new and very valuable skill.

The trouble is, there are only so many computers in this house.  I try to keep the Doritos crumbs and milk spillage to a minimum around my laptop, so I'd prefer they stick to using the secondary one.  They fight over it, like regular 6-year-olds.

His favorite clip on You Tube is from Dora the Explorer (I'm sure that comes as a big shock), The Chocolate Tree.  He could watch it over and over and he stims (v. to self-stimulate; (specifically) among autistic people, to fixate on a comforting or compelling thing or action (such as rocking or humming); to perseverate.) wildly as he watches, screaming and wringing his hands until he rubbed a sore on his index finger (if you look at the pictures on the post right before this one, you can see it in the picture of him screaming right next to the trampoline). 

He gets himself so worked up watching it that I'm trying to ban him from it.

I poked around in Internet Explorer looking for a way to block just The Chocolate Tree videos from You Tube, but it seemed to want to block You Tube altogether.  So be it.  I blocked it.  But it doesn't work!  They can both still bring You Tube videos up on that computer.

When I try to remove him from the computer and redirect, he's pretty aggressive and out of control.  It brings out the "bad Zack."  He'll scream and cry and it's more than the screaming he usually does, when he doesn't get his way.  There's a breathlessness to this screaming, and his face gets all blotchy.  He'll pinch anything or anyone within reach.  It's much more tantrumy.

So apparently, going to "Content" in "Internet Options" and blocking http://www.youtube.com/, does not actually make it so you can't get to http://www.youtube.com/.  I'm not sure what function it achieves.  I'll keep exploring it and maybe I'll figure it out.  I guess it's just another example of technology getting the best of me.

A social life made complicated by aggression

AJ is really comfortable at school, just makes himself at home:

Zack is less comfortable.

Today their teacher called to tell me about a little social situation that has occurred between the boys.  A friend-triangle, if you will.  As any regular follower probably knows now, Zack is more shy and introverted, while AJ is quite outgoing.

Well, my little social butterfly has made a friend -- I'll call him Tyler.  AJ and Tyler sit next to each other on the bus sometimes (not by choice -- they are strapped into seats), and once in awhile during school day, they will hold hands.  (Awwww!)

Well today at rest/quiet time, Tyler patted the mat next to him and looked at AJ, wanting AJ to come lay down next to him.  AJ did, and apparently Zack didn't take too well to it -- he came over and was pretty aggressive toward Tyler, trying to pinch and bite him.  Their teacher said it was heartbreaking, because it was pretty clear Zack was jealous.  Zack had to sit in a chair during rest time (which is not as bad as it sounds.  In the autism room several kids can't lay still and are disruptive, and sit quietly in chairs.) and AJ looked from Zack to Tyler.  He seemed torn.  Their teacher thinks AJ understands that Zack is jealous and frustrated.

Zack had problems on Valentine's Day, too.  He became angry about something and tried to pinch a classmate shortly before the scheduled party in their typical kindergarten classroom.  So AJ and Tyler went to the kindergarten room for the party, and Zack went to his regularly scheduled DAPE - developmentally appropriate physical education - and then just popped in at the end of the party.  I feel bad that Zack had to miss it, but then it sounds like he wouldn't have enjoyed it anyway.

What is causing Zack to be so frustrated lately?  If anyone knows, I'd be interested to hear about it.

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!