Tuesday, December 23, 2008

How Not To Write a Christmas Letter

This time of year, mailboxes everywhere are filling up with letters from our friends and relatives recapping their years. To a parent of a kid with special needs, or any child struggling, or any family struggling, these letters can be as painful and annoying as sciatica. Maybe I should speak only for myself. I find them to occassionally be as painful and annoying as not just sciatica, but as heartburn, canker sores, and blisters.

I should stop here, or at least pause, to say I do share in the victories of my friends and their kids. I guess I have a hard time with the comparison. Were I to write a Christmas letter, this or any year, it comes out sad and tragic and just not right. Perhaps it's just my writing style, or my intense need to be honest (should anyone ever ask me about it later, I need consistency), but I'm just not one of those people who can paint things in a light that is more cheery than things really appear.

My Christmas Letter, had I actually written one this year, would read thusly:

To my dear friends and family,

Here's hoping 2008 really is coming to an end soon, and let's hope and pray for a fabulous 2009. I hope that the celebrations of Christ's birth in your home and community are filled with peace and love, and if you don't believe in Jesus, I hope you have abundant peace and love too.

We've had quite the life changing year this year! The year began and only 5 days in, my mom's eye went out. As you may know, she has been blind in her right eye for the last 7 years, due to a series of retinal detachments. On January 5, her left retina detached and the surgery to repair it ended up permanently damaging the back of her eye, rendering her almost completely blind. I had essentially moved in the day she had surgery, to help her recoup, but then made it permanent somewhere around March, when we knew that her vision would never recover. The rest of the year for her has been spent relearning how to negotiate the world, and with the help of my awesome sisters and my mom's generous friends, she is doing very well. I tell everyone who asks about her, she's exactly the same, her health is still fine, she just can't see you if you sneak into a room.

So, I moved back in to my childhood home. It's a nice home, I have no complaints. My cat certainly likes it more than she liked our old place, there are more windows and hiding places. I've always loved my bedroom, with its south and east facing windows.

The Kid had a comeback this year that would put Shatner to shame. He started the year in the throes of antipsychotic withdrawals, which lasted until the better part of April or May. I got sick of his weight gain, drooling, bedwetting and continued erratic behavior and told his psychiatrist he was going off of the meds. The Kid dropped from 15 mgs of Abilify to none in 9 months, dropped tenex and depakote without much down-titration (and without ill effects really, it's the abilify that was the bitch for him to lick). While going off of the meds, I tried to engage the help of the psychiatric community, but they all told me to put him back on the meds. I went completely against medical advice, and was right. After he had the meds leave his body, he dropped approximately 50 pounds, his violent and aggressive behavior generally stopped, his motor skills improved, he slept through the night, he engaged at home more willingly, he began to participate in academics more fully, he became capable of participating in group activities at school, he could make it through a day, then a week, then a month without aggression, without outward difficult behavior. We fought hard to add occupational therapy and assistive technology to his IEP, and won.

To anyone who has ever poo-pooed mother's intuition: Go suck it, I was right on every single point. Vindication is the word of my year. That, and eyeball.

So, The Kid was officially rediagnosed with Asperger's in April, bringing on the official autism spectrum disorder diagnosis I'd inexplicably put off for several years. With it comes a new slew of therapies that are on the slate for 2009, most notably occupational and vision therapy. He is getting more one on one work at school on social thinking processes, and my approach to helping him has grown in innumerable ways.

This fall he went back to school and has been an absolute success over last year. His problematic behaviors gone, we've been able to concentrate on a number of core issues and challenges, most notably sensory integration, handwriting, reading, and understanding other's social intent. He's making some progress, and our hope is that before the end of the school year, he will move into a less restrictive classroom environment inside of a general educational setting, so that maybe he can meet some kids who live nearby, and maybe he can begin to make some friends. It's exciting, and terrifying.

I spent a great deal of the year in career limbo. My boss quit his job, leaving me alone for a full 9 months before my company realized I was sitting there day after day with little to nothing to do. I've been reassigned and I'm busy and hassled and annoyed again, and with the economy the way it is, I've never been more grateful to say I have a job, even if it annoys the ever-living crap out of me 90% of the time.

Personally I've been in a deep dark hole and for the most part I've been inside my own head so much I barely recognize the outside world. I wouldn't say I was depressed, because I know people who get depressed and I just think I'm chemically incapable of being depressed. God knows I would have refused psychiatric medications anyway. I am held up by my family, my amazing and loving inspriration of a child, my sisters who are my best friends, my best friends who are like sisters (and brothers), and I guess, I world of hope and a deep-seeded belief that I'm at this for one reason or other, which will only be elucidated after a long life. I'm doing okay. You move back into your mom's house at 32 and tell me you would be all, "MY LIFE FUCKING ROCKS! I'M AWESOME!" you know?

Anyway, hope you get some good loot for the holidays, but more importantly, you get the opportunity to tell someone that you love them, and that you have the luck to be told that you are loved back.

Much love,

Friday, December 12, 2008

Actual Music I Have Listened To...

...in preparation for IEP meetings.

I have to psych myself up for school meetings like athletes get ready for the big game. I need to get myself ready with the three basics of IEP preparation: 1. Don't Cry. 2. Kick Ass. 3. Take Names. Oh, and of course, be nice, don't burn bridges, but mostly 1, 2 and 3.

Here's the top five songs I've used to prepare:

1. Army of Me.
"If you complain, one more time, you'll meet an army of me." Simple enough.

2. Lacrymosa.
Get the tears out privately. I nominate this song for the saddest song ever, in latin.

3. Hooker with a Penis
Um, I had to look up this title, and I had no idea this was the name of this song. I know it as the 'Fuck You, Buddy' song, and it's fairly hard for me to believe that the actual name of the song is well, worse than that. Actually it totally changes my concept of the song, and I must state here that this has been my go-to angry song for the last, um 12 years, and I never ever listened to the words, tried to conceive that tool had stories to tell in their songs. But, it totally also totally makes sense. "If I'm the man then your a fucking man as well." Um. That just makes me feel stupid that I never figured that out. I include it, because it's a rocking, ANGRY song. Now, however, I know it's a song about some dude's angry reaction to finding out the painted lady he hired is no lady at all. Ah well.

4. Lessons Learned.
Cheeseball, I need inspiration song. No nominee for best ever anything, unless you count lyrics that speak to me, personally. It is also very hard to find good you tube videos of this song, just so you know.

5. Me Jane.
Dude. This post is making me feel old. This has been my she-power song for 15 years. I swear I do have new songs that I like. I swear! I'm still, um, six months behind being hip! I just can't put any of those songs as my go-to psych up songs yet*.I used to listen to this song to get ready for dates (this may explain why I'm not married). Now I listen to it on my way to talk about my son's special education interventions in the school. I'm also nuts.

*Honorable Mention: Hot Soft Light
Didn't mention this song because it's totally about partying and making out and being stupid and young, so it's not particularly inspiring me for IEP meetings, persay. More of an 'on the way to work' song, for sure. Apparently, I need to rethink my criteria, because I clearly am inspired to talk education by songs about dudes who are really pissed off that their hookers are dudes.

Saturday, December 06, 2008

Books About Aspergers and Corresponding Disorders

In response to my last post, Wrong Shoes asked respectfully for a list of the books I've been reading to get up to speed on The Kid's fairly new diagnosis of Aspergers. So, here's a list of resources, some new to me, some long-ago dogeared, that I find to be helpful in teaching me all that I can learn about how perhaps I can tap in to The Kid's brain, and more effectively build a home and school program to help him succeed...

  • The Complete Guide to Asperger's Syndrome by Tony Attwood. This book is the textbook on textbook Aspergers. Lots of info, lots of what to look for, not so much, in my opinion, on what to do. Finding WHAT TO DO is the hardest thing, I think.
  • Kids in the Syndrome Mix by Kutscher, Wolff and Attwood. Hits it right on, that there is this type of kid that bounces from ADHD to Bipolar to Tourettes to LD to Aspergers. The Kid is definitely 'in the mix.' Unfortunately, once you've read Attwood's Asperger's tome, the Papolos's Bipolar "bible", and then Russell Barkley's ADHD books like I have, you've essentially already read this book. I suggest this book for TEACHERS, and for parents new to a diagnosis, or have a child entering school and special ed without a diagnosis, but with a strong sense that their child will be diagnosed with ADHD and the like.
  • Seeing Through New Eyes by Melvin Kaplan. I keep putting this book down before I can get very far. It is about Behavioral Optometry, which is a method of helping The Kid that I am very seriously considering. He was evaluated by a Behavioral OD this fall, and it was clear that The Kid had difficulty tracking an object with his eyes across a field of vision (his eyes jumped, intermittently, rather than smoothly following the object, something which developmentally he should be able to do by 8 years old), and cannot discern depth perception with great accuracy. The conceit of this kind of therapy is that if you repair the ability to see, you will clear up a number of the sensory and attentional difficulties that manifest from problems created by these vision impairments. These are not vision impairments normally caught by your everyday eye doctor, and of course the therapy and the exams are not covered by insurance. I am not a fan of this particular book, although I'm interested in following this course of therapy, because it promises a complete cure to autism, aspergers, ADHD, learning disabilities, etc. That annoys me. I don't get my hopes up anymore.
  • The Out of Sync Child and The Out of Sync Child Has Fun by Carol Kranowitz. The basics on Sensory Integration Dysfunction. The Kid has numerous sensory issues, which I've written about before. Clothes have to be just so, with no tags or fabrics that he might find disturbing. Jeans are out, as are any pants with buttons. Loud, open, cacophonous rooms or venues make him either explode outward or escape inward, either way, unreachable. I could go on and on. I didn't find the former especially helpful for a plan of action, but the latter has lots of fun, sensory-friendly activities and games. We are, and have been, on the waitlist for weekly occupational therapy for months now, and now that we're at this stage, I find it hard to believe that I've waited this long to take this plunge into intensive OT. To any trained eye, it should have been the first thing we did when he was in preschool. Bygones.
  • Saving the best for last, of course. Thinking About Me, Thinking About You by Michelle Garcia Winner. Big fan. I'm a BIG fan of Ms. Winner. Her methods don't work for all kids on the Autism Spectrum, but her brand of teaching social convention is right up my kiddo's alley. I have been pleading for his school to use the Superflex program with him in his 1:1 therapy time, but they haven't done so even though they own the program, mostly in favor of allowing him to perseverate on paper airplanes and the like. Grrr. At any rate, the basic tennet of the Social Thinking programs is that social convention, like everything else we aim to teach children with ASD's, can be broken down and taught. You can be taught that other people are thinking about you as you are acting. You can be taught that other people think differently than you and may or may not expect you to act in certain ways at certain times. You can be taught that there are appropriate situations for certain behaviors, and situations where certain behaviors are never appropriate. Big fan. Huge.

So, to this I add two items, fiction or memoir.

  • I Love You To Pieces. A totally heartbreakingly wonderful book of short stories written by parents of special needs children, organized along a timeline of birth to adulthood, representing the various concerns that come along with each milestone and age in both the lives of the children and parents. Some of the authors' children have autism, some cerebral palsy, some more rare disabilities I'd never heard of before. If you are a parent of a child with special needs, this is inspiring, touching, real. If you have a friend who has a child with special needs and you want to know what the spectrum of emotion they may go through, this book will give you a fairly good idea.
  • Hurry Down Sunshine. I'm not done yet, and technically this book is about schizophrenia, but it's also about a dad and his daughter. I have promised the publisher I'd write a full post about the book once I get it done, so expect that sometime next week.

Now, I know I'm missing many many books here. Most notably, I want to read more books from the perspective of adult aspies, like Look Me in the Eye and some of Jonathan Mooney's books. Any other suggestions?

Tuesday, December 02, 2008

Internal Debate

Me: I think I'm going to kill Soapy Water.

Me: But you love Soapy Water. You at least have to keep the archives!

Me: But the archives make me want to cringe. All that bloviating about the "idiots" at The Kid's schools, all the "thank God for psychiatric medications..." It's just a big emblem of the wrong path, the lost years...

Me: And yet, that's what got you and The Kid here.

Me: But where are we? Who wants to read about it?

Me: You know people will read it, the people who love you will.

Me: Yeah, we can't all be as famous as Mr. Lady. But the posts aren't coming out any more. I'm too self aware. I've lost that voice, I've certainly lost all semblance of hip-mom that seems to be prerequisite for mom-blogging.

Me: Dude, you were never "hip."

Me: True. But I thought I was. I have lost something. I can't describe it. And I'm suddenly gunshy. I can't be as opinionated as I once was, ever since every assertion I made about The Kid being bipolar turned out to be The Kid reacting poorly to the meds he was on, not at all bipolar.

Me: Yeah, and then the Asperger's Diagnosis.

Me: Autism Spectrum. I'm a newbie. I'm at a loss. I don't know anything, I'm fumbling around in the dark with what to do. And then there's the fear that just because the Asperger's fits today, it all makes some sense, I know in my heart of hearts I made bipolar fit, like a world view to help me fight. What if I'm wrong about this one too?

Me: But you read the books and you see those similarities. Your friends, all their stories. The years where he didn't sleep, even without meds screwing up his circadian rythyms, the hard times with haircuts and dentists, the vocal self-stimulatory behavior, the narrow interests, the hyper-focus, the social stuff, the sensory stuff. And don't forget the approach.

Me: The approach to Asperger's is the thing that makes me confident in his treatment, that's for sure. If the child is acting out, or seeking sensory stimuli, to what aim? What is the root cause of the behavior? Isn't that the best question ever?

Me: It's my favorite. After years and years of "if he's acting out, let's increase his dosage another .5 miligrams." I think you need to leave the old behind and start a new chapter. Part II of sorts, without moving the actual website, or so I hear...

Me: Part II. I guess it's worth a try. I can't promise anything.