The Specter of Residential

Some things we just don't want to hear.
Photo by Ambro

Last week, we had a meeting with the Wrap team and E's ABA therapist.  We went over the current plan and schedule and discussed what was working and what wasn't.  Mostly what wasn't.

We've had a few scary instances with E. lately.  These were relayed and discussed.  Each ABA session so far has been one big non-stop meltdown.  It's exhausting.  Appointments are becoming non-stop meltdowns.  We're all tired of walking on eggshells around E.  Sometimes his meltdowns are unpredictable, but usually we know what will set him off.  The reality, though, is that he has expectations to meet, including chores, and life is not one big party where you get to do whatever you want.  Just this afternoon, he threw a hairbrush at my head because I reminded him that there was a load of his laundry that needed to be put away.

Residential treatment was brought up at the meeting for the first time as something that could be a real possibility.  Even though I know that it's necessary for some kids, the idea is terrifying to me.  If it gets so bad that E. has to go into residential treatment, I feel like I've failed.  How many kids come back from residential with real improvement?  It seems like the ones I know of are a lost cause.  I feel like if I send E. there, I'll be washing my hands of him.  I fear the judgment:  "You can't even take care of your own child."  "You sent him away to be someone else's problem."  I would certainly feel that way, so why shouldn't everyone else be thinking it too, even if they are too polite to say it to me?

I don't know how to make this better.  I don't know how to make residential okay.

The Bank Incident

Ignorance makes me see red.
Photo by Stuart Miles

The other day I was in line at the bank when the following incident occurred:

At the small play area that the bank provides for kids whose parents are waiting in line a boy about E.'s age was having a full-blown meltdown.  He was pounding his father with his fists while screaming at the top of his lungs and cursing.  The father, who was holding him in a safe hold, looked worn down and exhausted, and it was clear that this was something he'd seen before.  He was also looking around a bit, clearly embarrassed that the other bank customers had to see this.  His three girls that were also there were playing in the area nonchalantly.  They had also clearly been witness to this type of meltdown before.  It was quite clear to me, both during the meltdown and once he had calmed down, that this boy obviously had an autism spectrum disorder.  Having been in that position many times, my heart went out to the poor guy.

This went on for a couple minutes.  Most of the people in the line were averting their eyes and staring straight ahead, obviously uncomfortable.  I wanted to go over to see if I could help, but I was afraid of making the situation worse.  Then, the woman in front of me turned around and said to me, not loudly, but clearly, "I guess some people just shouldn't be parents, huh?"

I immediately felt my heart speed up and my adrenaline kick in to high-gear production.  I suppressed an urge to hit this ignorant woman, and instead told her that I was pretty sure the boy was autistic, that my own son was autistic, "so maybe next time you should just keep your opinions to yourself."  My voice and my hands were shaking, and I'm sure she could feel my interior rage rolling off of me in waves.  Her eyes got wide, and she quickly turned around and didn't say another word.

The woman behind me placed her hand on my shoulder and said, quietly, "Good job."  I'm so glad she was there because I was nearly in tears.  I needed to get this check cashed, but more than anything, I wanted to run out of there.

I wasn't just angry because that horribly ignorant woman said that.  I was angry because I wondered how many others in that line were thinking the exact same thing and simply had the common sense not to say it.  It also confirmed my fear that people were indeed thinking that when I find myself in that same sort of situation.  I wondered what it was about me that made me look as if I would appreciate a comment like that.  Was it because I kept sneaking peeks over to the family?  Was it because of the worried expression that was probably on my face?

I was also angry with myself because I didn't have the guts to go over there and help.  For all I know, he might have appreciated a friendly face who had some experience with the same situation.  I don't know, and I never will know.

Would you have gone over?  What was the right thing to do here?

Alphabet Soup Mama?

Books have always made more sense than people
Photo by graur razvan ionut

I was perusing this month's copy of Autism Asperger's Digest, an excellent magazine that I highly recommend (and not just because I sometimes write for it!).  While reading, I came across an article that provided me with a great deal of food for thought.  The article was about girls with Asperger's syndrome.

I'm really only familiar with boys.  According to the article, girls usually go undiagnosed until much later because they present so differently than boys.  As I read through the article, my eyebrows continued to raise until they were practically crawling into my hairline.

This article could have been talking about me.

• I observe other people to figure out what to do in a given situation from an intellectual standpoint.  (I often fail or miss the point, by the way.)
• I learn to imitate other people.  You should have seen me in high school.  
• I was an avid early reader.  I read at a 12th grade level in the 2nd grade.  Yes, I was tested.
• I wrote my first piece of fiction in the 1st grade.  
• I was held back in Kindergarten because of immaturity.  I could already read, though.
• I'm fairly sure my parents would agree that I was quite pedantic as a child.  I still am, really.  As evidenced by this post.  
• I did not have many close female friends until about the 7th grade.  I usually played alone or stayed in with a book during recess.  I was much closer to my teachers than to my fellow students.
• I remember my 4th grade teacher showing me a trick so that I would at least look like I was making eye contact.  (Stare at the point directly between someone's eyebrows.  It looks like you are looking in their eyes.) I still use this tactic.
• I collected model horses, but I didn't really play with them.  I did, however, line them up very carefully and created labels for where each horse should go.  My mom was pissed when I wrecked my desk doing this.  
• Until I had kids and it became impossible to maintain, I alphabetized books, movies, and CDs and organized them according to genre.  It still annoys me that my stuff isn't alphabetized, but it's a pointless process with the kids around.  
• I never knew what was cool or popular.  Never.  That stuff was completely beyond me.  Even when I tried, I would always miss some crucial point.  I still do.
• I know a ton of random information on a ton of random topics.  It makes me a great content writer, though.
• I was freaking awesome at math up until about precalculus.
• Most of my romantic relationships have been utter, horrifying, horrendous failures.  I can beat you at pretty much any game of "who has the worst ex."
• I can be incredibly passive aggressive.
• My parents will know exactly what this means:  "... she has almost two personalities:  the meek school girl and the defiant, argumentative, and emotionally volatile daughter at home."

That's an incredibly long list and these behaviors are taken straight from the article.  I'm not going to pursue diagnosis or anything like that, but it certainly makes me wonder.  

Summary of the Week ending July 13, 2012

Okay, so I'm a day late....


Ready to get into some serious science?  What if a medication already exists that could change the circuitry of the brain enough to prevent the symptoms of autism?  Would you or wouldn't you?

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The fallout continues from last week's 50 Cent debacle.  The rapper decided to "apologize" (if you could call it that), but one of his events was pulled anyway.  Here's the thing:  When autism affects 1 in 88, maybe you should realize that chances are good that one of your promoters or supporters probably loves someone with autism and doesn't take kindly to nasty, ignorant remarks.  Food for thought....

********

This is one of those stories that makes your eyes sting with tears.  What a wonderful thing this family has done.

The OT Report

Integrated Listening System Therapy
Image by zirconicusso

A month or so ago, we had E. evaluated at MOSAIC, a physical and occupational therapy center in Seattle.  He has a number of physical issues that we've been concerned about for quite some time, and it was thought that they might be related to some of his other sensory challenges.

Last week, I finally received the full report.  It was huge and heavy, and I was worried just looking at it.  After reading through it, I felt like I had gone a few rounds in a boxing ring.  I felt overwhelmed, blindsided, and frankly, kind of sick to my stomach.

Nothing works the way it is supposed to on this kid.  Nothing!  How can everything be so goofed up?

Some of the highlights from the report:

• He has very low muscle tone, resulting in little trunk strength.  This is one of the causes of his difficulty with bicycle riding.  This is also reflected in his clumsiness, awkward gait, and even his difficulty sitting upright for any length of time.
• He has something called asymmetrical tonic neck reflex.  This is a reflex that is supposed to go away when you are six months old, and it causes a lot of problems if it doesn't.
• He relies almost entirely on visual stimuli for his balance.  If he closes his eyes, he basically falls over.  My mother hypothesizes that this is why we have such trouble getting him to wash his hair.
• He has severe deficits in practically every sensory category.

He'll be starting occupational therapy in August.  He is supposed to go twice weekly, and he's going to be using a program called integrative listening system (iLs) therapy.  This is a great blog post on the subject from Hartley Steiner, over at Hartley's Life with Three Boys.  I'm very interested to see how the system works, and hopefully it will make his life easier.

Have you had experience with this type of therapy?  What has your overall experience been with occupational therapy?  I'd love to hear your stories!  

Summary of the Week ending July 6, 2012

While Alphabet Soup was on vacation last week, one of the biggest stories of the year that could potentially affect Alphabet Soup families came down.  I'm speaking, of course, about the Supreme Court ruling in favor of the Affordable Care Act.

As expected, every group immediately chimed in with their opinion as to whether this was a good thing or not.    Here's my take away:  The ACA isn't perfect.  I don't think any perfect healthcare option exists.  I do think it's an improvement over the current system.  Do I think this way because I personally benefit from it?  You bet I do.  If you are the parent of an Alphabet Soup Child, you are going to benefit from this act because of one very important change that it brought about.  Your family can no longer be kicked off of insurance because your child has a pre-existing condition.  Your family can no longer be denied insurance because your child has a pre-existing condition.   These two points are so fundamentally crucial to Alphabet Soup parents, I just about want to shout them from the rafters.

Here's what other special needs websites are saying about the ACA:

The Autism Society
Autism Speaks
Easter Seals
The Special Needs Network

What is your takeaway on the Affordable Care Act?  I'd love to discuss it in the comments or on Twitter or Facebook.


*********

Other stories in the news:

One big story making the rounds, especially in the autism social network community was 50 Cents' tweet insulting someone by saying they looked "autistic."  The community was immediately up in arms, with boycotts and hashtags flying, demanding that 50 Cent apologize for the tweet, with autism advocate Holly Robinson Peete leading the charge.  I hope that I never have to see the day when "autism" turns into the new "r" word.

The research department of my hometown hospital Seattle Children's published a study providing evidence that autism is the result of a gene mutation.  The mutation can lead to a variety of disorders, including megalencephaly, cancer, and epilepsy.  

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The Daily Schedule

We recently started Applied Behavior Analysis with E.  From the first day, the therapist identified that E. needed to be able to follow directions without melting down.  (Kind of a "duh" moment for us...)  E. is extremely good at avoiding activities that he doesn't want to do, and once he has slipped into "meltdown mode," it's challenging to get him back on Planet Earth.

After three sessions that basically consisted of the therapist trying to get E. to participate in family life and E. having a meltdown for almost the entire session, the decision was made to create a structured schedule for the summer that includes time for chores and daily living activities with built-in natural rewards.  I know that E. can flourish with this type of schedule; I've seen him do it when he was at Children's.  I've thought that E. would actually do really well in the military, except for the whole shooting people with guns thing.

On Tuesday, we sat down with our Wraparound parent partner and hammered out a schedule for the summer:


8:30 Take medication, feed cat, feed fish

9:00 Breakfast

9:30 TV time

10:30 Book time

11:00 Clean up and chores

11:30 Lunch

12:00 to 5:00 Free time. May use one hour of TV and play outside, as long as chores are done.

5:00 Help with dinner prep

6:00 Dinner

7:00 Kitchen cleanup

7:30 Room pickup and inspections followed by bath/shower time

8:00 “Simpsons” if room is clean and shower is done

9:00 Bedtime

We start implementing the schedule today.  I'm suspecting that we are going to have some resistance at first, but I'm hoping that E. will adapt to it.  I'm also concerned about days that don't follow the schedule, such as when M. has her speech therapy on Tuesdays and E.'s own appointments (which might be increasing drastically in August... more on that later...).  Once a schedule is set and details are hammered out, he tends to fixate on them.

I think E. will like having set times for each item.  One of his first questions when we have a potential event is "What time will it be?"  If I can't give him an exact time for when something will occur, he gets extremely agitated, sometimes even to the point of melting down.  "Later" is never an acceptable answer; neither is "sometime this afternoon."

I'll update with how it goes....

The New Friend

Photo by twobee

We just recently moved to a new complex on the other side of town.  While E. usually has some challenges making friends, he had a few kids to pal around with at the old complex and was worried about whether he was going to find anyone to play with at our new home.

A few days after the official move, E. asked if he could go out to see if he could find some kids to play with.  I didn't see a problem with that, so I told him to check back in an hour.  When his hour was up, he came back bursting with excitement over his new friend.

I was happy to hear it, and for the rest of the day, all I heard about was how cool Luke was and what Luke was into and what they had done together.  I was looking forward to meeting Luke, this child who was so quickly accepting of E. and all his quirks.

A couple days later, E. came back with Luke's dad's phone number and a request that Luke come over and play.  I was impressed that he had thought to get a phone number and called Luke's dad, ready to meet E.'s new best friend.

It turns out that Luke is not even five years old yet.  E. will be twelve in just a couple weeks.  I was disheartened and felt like I should have known.  E. doesn't get along well with kids his own age and typically prefers the company of kids who are much older or younger.  It's a pretty stereotypical behavior for kids with HFA, and it sometimes hurts to see E. behaving in "textbook" fashion.

I explained the situation to Luke's dad, who also didn't understand why E. would want to play with someone so much younger.  He was understanding and even walked Luke over so that we could meet.  Luke and E. played together well, even including little sister in their games (Luke is, after all, much closer to her in age).  Occasionally E. was disappointed when Luke was unable to follow along with some games and wasn't interested in looking at items through microscopes, but they seemed to have fun.

Watching them together, I completely understand why E. would seek out a friend like Luke.  To Luke, E. is the cool, older kid who takes the time to show him neat things.  He admires E., and he doesn't see the differences the way a child his own age (or older) would.