Bringing It Back to Life

It's been far too long since I've posted on this blog. I think it's time for a resuscitation!

This month, I was fortunate enough to have another article posted in Autism Asperger's Digest, this one a personal piece about making tough decisions and finding solutions in unlikely places. Since I received my contributor copies, I realized that the magazine would be hitting other people's mailboxes and that they might find their way to this blog.

What has happened in the months since I last posted? 

When I last left you, we were worried that residential treatment was lurking on the horizon since Elias was having such a tough time. Fortunately, that option is presently off the table.

Unfortunately, you didn't get to hear about the excellent new program being offered by our school district. They had created it over that summer and Elias was one of the first students to be in it.

A New Program

It was called the High Structure Classroom, and it was for the kids at the middle school level who needed the extra behavioral support before high school. The goal of the classroom was to find that support and eventually mainstream them. In the 7th grade, Elias did well in the class. There were about eight students and four paraeducators, and he could get the one-on-one attention he needed. His grades improved significantly. For the first half of the year, things went well.

In the second half of the year, after the holiday break, we began to have some setbacks. Elias doesn't handle transitions well, and we really struggled to regroup. Toward the end of the year, with Elias still struggling and meltdowns becoming more and more common, another option began presenting itself.

In our district, we have a school that is designed specifically for kids with high behavioral needs. Not thugs and gang members, mind you, but kids like Elias. Many kids who attend that school are on the spectrum or have other "alphabet soup" conditions. We decided to keep Elias where he was for the time being.

More Challenges

In September, when school resumed, the high structure classroom had grown to a whopping 16 kids. While they had the same level of support, the classroom was noisier and more chaotic, and Elias didn't handle it well. I was getting phone calls every day, and before even a full week of school had passed, Elias was suspended for a week for bringing a sharp object to school.

In the two months since the beginning of school, Elias has only made it a single week without having to go home because of meltdowns and aggressive, unsafe behavior.

A couple weeks ago, we had a meeting with the full team. The specialized school was put on the table. I was initially resistant, feeling stigmatized and like Elias was being grouped in with the "bad kids." I'm sure many of you know what I mean. It's hard to realize how much help your child really needs sometimes.

Switching Schools

Gavin (husband) and I had a tour of the school last week. Only about 40 kids attend the school and there will only be 6 kids in Elias's class, with three teacher-counselors (every staff member at the school is a counselor who has a teaching certification). There's just about a one-to-one ratio of kids to teachers at the school.

After the tour, I felt better about Elias's chances and the opportunities he could have. On Tuesday, we had an IEP meeting to change his placement. Today, Elias gets his tour and intake meeting for the school.

So that's where we're at.

Welcome to Alphabet Soup Child. I hope we can turn this site into a vibrant place once again. Sorry for dropping off the planet! On a personal note, work has been fantastic and business is booming. My writing is in demand, and I'm now the Copywriting Director for Great Professional Websites, a title I'm quite proud of (and you'll know why if you've read the Autism Digest article!).

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....

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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.


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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.