Thursday, March 25, 2010

Shorties: Making Friends

Ryan's teachers have been coaching him on certain niceties of conversation, and how to answer a few specific questions. Sometimes I discover Ryan's new areas of expertise in surprising exchanges.

The other day we were in the elevator, and a neighbor asked Ryan why his tricycle had the letters RYAN on it. I tried prompting him: "What's your name?"

No answer.

"What's your name?"

He said, "Meredith."

Oh. Surprise, he knows my name.

"No, that's my name. What's your name?"

"Ryan." Then he paused. "Mommy, this is Bike. Bike, this, uh, this, Mommy, Bike...." He apparently is being taught to make introductions, but he was having trouble remembering the formula: A this is B, B this is A.

"Pleased to meet you, Bike!" I said graciously.

....

This morning, Ryan was playing with a pile of stuffed animals. He held one up, looked at me, and announced, "This is my friend, Penguin."

He held up a polar bear. "This is my friend, Bear."

He held up the penguin's scarf, which had fallen off. "This is my friend, Scarf."

....

Then we were looking at the stuffies' tails. "Do you have a tail?" I asked him. (properly answering yes/no questions is a major thing we've been working on.)

He looked at me like I was an idiot.

"No. I'm a boy."

Duh!

Tuesday, March 23, 2010

Get Freaking Involved

"What a difference a year makes, huh?"  The CPSE chair smiled at me at the end of a parent workshop about transitioning from CPSE to kindergarten.  I was signing up to be a volunteer parent member at other families' future CPSE committee meetings.  "I remember vividly your first meeting with us.  You were crying..."  Her voice was light and chiding.  "But now look at you.  You're confident.  You're like, 'This is what we have to do.'"

She's right - I was a wreck.  I was doing fine until I asked the three professionals in the room, "Do you think Ryan might have autism?"  They all looked at each other.  And the district psychologist exhaled and said, "We do see some signs..."  That's when I lost it.  I knew nothing about autism, nothing about my child's future.  All I knew was this scary word.  Over the last year-and-change I've learned more about raising a special needs kid than I ever thought I would need to know.  

What struck me as odd about the chair's comment was that she remembered our first meeting.  This woman has a heavy case load, and she's certainly not brand new on the job.  Was that meeting really so unusual?  Don't all parents melt down when given a name for the not-quite-right feeling they had about their child's development?

Then the chair looked around the room.  "I have 75 cases a year.  How many parents do you see here?  Eight?  Maybe we'll have eight again when we do this workshop again next month.  Most parents just aren't involved."

I was stunned.  I understand that a lot of single parents might he pressed to secure a babysitter so they could go to a meeting after work, and many working parents might have a hard time taking off from work to go to a morning workshop.  But there were parents who brought their kids to the meeting I went to - it can be done.  In my world, if you have a special-needs kid, your primary responsibility is to be as informed and engaged as possible so you can be an effective parent and advocate.

Then I realized that the most likely reason the chair had remembered our first meeting was that I'm one of the few parents who has been actively involved this year.  Going to the meetings.  Calling.  Emailing.  Making requests for services.  Making work for this poor woman.

And because I've been involved, I've almost always gotten what I've requested for Ryan.

The parent workshop was ostensibly about the differences between preschool-level and kindergarten-level services, but the underlying theme was that the parent is an equal member of the Committee, and that it is imperative for the parent to participate in the Committee's decision-making process.  Parents should not have to be told that they have a role to play in decisions made about their child's well-being.  Parents should not have to be encouraged to become involved in their child's life.

I had been annoyed that at our CPSE meetings, the volunteer parent member has never opened his mouth, but now I understand why: he's there for the benefit of parents who don't understand the power they wield.  He knows that I can speak for my child, so he has backed off and let me do the talking.  Now I'm just looking forward to being trained to become a parent member so I can help other parents advocate for their own kids.

That's a job no parent should have to be told to do.


Thursday, March 18, 2010

The Most Offensive Thing in the World

I want to like Autism Speaks - I really do.  I like the idea of a large autism-advocacy organization with national reach, a recognizable logo, and the money and power to do good.  But they keep putting evil crap out there that makes me want to round up their leaders and smack each and every one of them in the face.  I'm at the point where I've made the conscious choice not to buy Lindt chocolate bunnies because they donate a portion of proceeds to Autism Speaks - when I avoid chocolate, you know the situation has gotten serious. 

Here's a video they have up on YouTube.  It's been up since September, but I only just stumbled across it today.  And it disgusts me.  I watched with my mouth hanging open.  Clearly others in the autism community find it as disgusting as I do, because it's currently rated ONE STAR, and followed by over 3000 mostly angry comments.  So go watch it, I'll wait.

[edited 3/1/15: Autism Speaks had taken down that awful video, so the link was broken for a long time. I just discovered that an anti-AS individual re-posted the video in December 2013. Read the comments (just this once) to see what autistic individuals really think of Autism Speaks.]

Now scrape your jaw off the floor...


Autism is not a disease.  When the scary narrator says, "I work faster than pediatric AIDS, cancer, and diabetes combined," I have no idea what the hell he means.

There's enough misinformation and stigma out there already without a group that supposedly exists to support families on the spectrum throwing terrifying images into the wind, like, "if you are happily married, I will make sure your marriage fails," or  "I don't sleep, so I make sure you don't either," or even "I am still winning, and you are still scared, and you should be."


Shut the hell up, Autism Speaks.  You do not speak for my family.  You do not speak for my son.  And I'm pretty sure you don't speak for anyone else with autism, either.  You don't even have a single autistic person on your staff (though I am pleased to hear that John Elder Robison has just joined your scientific advisory board.  So now you have one Aspie on board.)

Did you read any of the blistering comments that followed that hateful video?  Most appear to be written by individuals with autism who can speak perfectly well for themselves:
- You Guys are jerks! My autism is a GIFT! You want to take away WHO I AM... All I have to say to you lot is: YOU WILL NOT DESTROY ME!!!!

-
Autism Speaks hates our guts they would rather see us vilified and dehumanized than actually succeed in life.

-
Hmmm, brain damage? This brain damage has gotten me a 1500 on the SAT, a 4.0 in high school, a 3.75 in college, and I can do calculus in my head. But if my parents had fixed this brain damage, I could have been just like you! Man, I sure missed out!

-
As an Autistic, I am SO infuriated by this video. We are not evil problems, we are not pain-oriented psychopaths. We are not evil diseases who want to ruin peoples lives. WE ARE HUMAN.
Etc, etc.  Here is a terrific response video made by someone I've never met, but who I hope gets noticed by Autism Speaks.  Nicely done, Belinda.

And Autism Speaks does not speak for the medical or financial interests of spectrum families, either.  Here in New York the state senate is considering two distinct health insurance reform bills about autism-related care.  The Community Bill (Senate Bill S6123) is supported by every national and statewide autism advocacy organization, including the AMA; American Academy of Pediatrics; NYS School Board Association; NYS Speech, Hearing and Language Association; NYS Occupational Therapy Association; Autism Action Network; Autism Action NY; Autism United; Autism Society Of America (national and local chapters); Foundation for Autism Information and Research; Generation Rescue; Global and Regional Asperger Syndrome Project; National Autism Association; New York Families for Autistic Children; Project Link; SAFEMINDS; Schafer Autism Report; Talking About Curing Autism; Upstate NY Families For Effective Autism Treatment; Upstate NY Autism Awareness; United States Autism and Asperger Association; and YAI.

The competing bill (S7000) is supported only by Autism Speaks.  It was written by their lobbying firm, which also happens to represent many of the health insurance companies that would be inconvenienced by the Community Bill.


I think that speaks volumes about Autism Speaks.


Friday, March 12, 2010

My Hero

This morning I was stomping around the basement, pissed off about our building's resident crazy-ass old lady.  I think every community has one.  Ours is named Terry.  She's a crumbly lady with cat-eye glasses and a sour face.  I've never heard her say a single nice thing to anyone.  Once she rolled her granny cart up to me and said, "I just saw So-And-So.  She's put on a lot of weight.  I found this Slim Fast in the trash - I think I'll give it to her."  Her primary occupation is sorting the building's paper recycling area in a way that satisfies her OCD - newspapers on the bottom, comics and coupon circulars on the top, magazines in a separate stack.  And if there's old mail, she gathers it in a small yellow trash can and takes it home to read.  If someone told me she was involved in identity theft, I wouldn't be surprised.

The thing that had pissed me off this morning was that I discovered the bag of junk mail and cereal boxes I had placed in the recycling area last night had been magically deposited in the trash can in the laundry room.  It was clearly Terry's organizational work.  I've seen her separate out paper she doesn't approve of and throw it away - I've even called her on it.  I once made a big show of taking the paper out of the trash and putting it back in the recycling bin.

So I took the passive-aggressive-note route and made her a sign, which said "Terry: junk mail IS recyclable.  Please leave it in the blue bins!"  As I was putting it on the wall, I saw Mr. Serapio, one of the building's porters, and I blurted out, "I'm so sick of Crazy Terry's freaking bullshit!"

He nodded and calmly replied, "We must pray for her."

I told him, "You're a much nicer person than I am."

He shook his head and pointed a finger upward, and said, "There's only One who is nice."

Someday, I aspire to be like Mr. Serapio.  He's incredibly kind, patient to a fault, and he seems genuinely connected to his faith with a sincerity I envy. 

Me, I just grumble and talk shit about a pathetic little old lady.

I have a lot to learn.

Thursday, March 11, 2010

Little signs of big progress

Ryan's had a couple of days of fabulous little moments - subtle signs of progress that make me so proud of my little guy, and grateful I can be present to see them.

Yesterday, we were walking to the park, really freaking slowly.  Ryan stopped; I kept walking.  Then I heard him call, "Mommy!" to get my attention.  This alone was huge - it's more common for him to quietly ask for something while he's in the living room and I'm in the kitchen and can not possibly hear him. 

So he got my attention.

He pointed at a dried-up brown crumbly leaf on the grass and said, "We can take this to Daddy!"  He formulated a plan for the future!  And he told me about it! 

He picked up the leaf and we kept walking


This morning, Ryan asked me (very politely and calmly) to open the shade and curtains on my bedroom window.  As we looked out the window, I said, "It's foggy today."  And Ryan asked, "What foggy?"  Meaning, "What does the word foggy mean?"  He has never before asked me to define a word he didn't understand.  And the inflection of the question was perfect - went up at the end and everything.

Little signs of big progress.

Monday, March 8, 2010

Justify THIS

Saturday was another AutDar day.  At the park I noticed a barely-verbal eight-year-old girl playing awkwardly with a tree branch.  When I commented to Stu, "She's one of ours," he responded, "Even I could tell that."

I struck up a conversation with her father.  My point of entry was "You look so familiar, didn't we meet at Support Group?"  He seemed like a lovely man, he was full of suggestions of resources in the community, he twice offered me his wife's phone number to discuss Kiddo's fabulous public school.

But I couldn't bring myself to take the number.

"I'm sure I'll be seeing you around," I said.

The truth is, I feel a little funny around families of kids more severely affected by autism than my son.  When I see children who can not speak, why can not blend into society as well as my child, I feel like I have no business complaining about anything having to do with the hand we've been dealt.  Then I realize I still have all those feelings of frustration and anger and disappointment that I walk around with every day, and I feel like I'm supposed to justify myself.  I want to say, I know your life on the spectrum is harder than mine will ever be, but that doesn't mean mine is easy.  But this isn't a contest of suffering, so why the hell do I feel like I have to justify my feelings to anyone?

I know that nobody is actually looking at me thinking "what's her problem, she has no business complaining," but I have an active paranoid imagination.  I always have.  When I was a kid, I spent several years convinced that people were only being nice to me because my mother must have told them I had a terminal illness and they all felt sorry for me.*

I've only participated in the support group I mentioned above two or three times because I felt stuck between worlds.  Most of the families who participate regularly have lower-functioning children, and their needs are so different from ours that I felt like I had little to contribute to the conversation.  But when I'm around typical kids and their families, I feel lost because Ryan's needs and abilities are so very different, and I have absolutely nothing to talk about with them.

I wish I felt evolved enough to have taken that guy's number, but I still have some growing up to do before I can play nicely with others.  I think I couldn't bring myself to admit I might actually belong in his circle of friends.  It's a club nobody wants to join, but it sounded kind of nice - his wife wasn't at the park because she and her special-needs-mommy friends had taken a girls-only overnight trip for the weekend.  The husband said the ladies only take that trip once a year.

Maybe next year I'll be ready to join them.



* For the record: I am not now, nor have I ever been, terminally ill.

Friday, March 5, 2010

Enclosed are the following reports for the CPSE/CSE Annual Review...

All of Ryan's teachers and therapists have written reports on his progress in preparation for Monday's big annual IEP* review.  Analysis of all his accomplishments and weaknesses, classified and assigned percentages and percentiles and equivalent developmental ages. A clinical and dispassionate evaluation of my child's progress toward achieving his academic goals.

It's kind of painful to see all that stuff in writing, even though I know it's all true.

According to the Behavioral Observation Developmental Assessment of Young Children (DAYC), Ryan has only a 1% cognitive delay, but a 38% social-emotional delay.  He's on par with a 2-3-year-old on X, on a 3 1/2 year level with Y, and a 4 1/2 year level with Z. 

Then there are the long, strangely detailed lists of his IEP goals.

- Ryan will maintain eye contact with the speaker for 1 minute. (Emerging)

- Ryan will clean up materials after each activity and at the end of the day. (Mastered)

- During 1 verbal exchange, Ryan will control vocal intonation and body language to accurately match the intent of the message. (Emerging)

- Ryan will attempt 3 new experiences without protest.

My favorite part of these reports is the Regression Statement - each therapist details what sorts of losses of skills Ryan experiences following short breaks from school, and recommends the board of education continue to provide services for him over the summer.

Then there are 15 pages of narrative, single-spaced, excruciatingly detailed accounts of what my baby can't do that a typical 4 1/2 year old should be able to do.

I know these statements are accurate - I've seen all these behaviors myself - and I know that the worse the reports make Ryan sound, the greater his odds of having his required services covered.  But it's hard to read this litany of my baby's challenges all spelled out in black and white.

When Chrissy emailed me her report, I shared my ambivalence with her.  Her response sums up all the reasons I love her:

I know it sucks to read - but we know what an awesome kid he is and how much he has grown since last year and continues to change every day!!

She's right.  Ryan is still The Captain.





* Individual Education Program - the document that outlines what services Ryan will receive and why.

Thursday, March 4, 2010

We're Quitters

It all started out so promising.  Ryan was really excited about ice skating at first.  He loved staggering around the rink with me at open skate.  When we signed him up for lessons, he seemed open to the idea of skating with other kids and an assortment of high school-aged teachers who had no idea what to make of him.  Week after week I watched the other kids learn to glide while Ryan struggled to walk back and forth across the ice, but figured as long as he was having fun, this would be a good experience for him.



Then he stopped having fun.

One week he started bawling halfway through the session.  The instructor escorted him off the ice.  I tried to calm him down enough to find out what the problem was.  He asked for juice.  I gave him some juice and sent him back out on the ice.

The next lesson or two he seemed perfectly content.

The teachers divided up the kids by ability.  Ryan's lesson devolved into a one-on-one with one instructor or another, as the other children broke off into groups too large for a single instructor, tripping over each other as they practiced two-foot glides and swizzles. 

Then, the crying and screaming started about 10 minutes into the lesson. When the instructor ushered him out of the rink, Ryan wailed, "Go home take a break!"  I returned his rental skates and brought him home.

More lessons, more crying.  I could see him mouthing "Go home" through the plexiglass.  This past Tuesday, the crying started before he even stepped onto the ice.

On Wednesday I called the rink manager and got him to agree to credit the remainder of the semester toward a future session.  "I really appreciate all the one-on-one attention, but he's just not ready."

Maybe in a few months he will be.

I'm embarrassed by my own reaction to this situation.  I think I just wanted him to be able to succeed in a "normal kid" activity.  I had this fantasy of standing around with the other moms, making small talk while our children skated for 30 minutes.  Ryan would blend in with the other kids (except he'd be the one without the goddamn overprotective bike helmet - there's no freaking need for a bike helmet in skating lessons, people) and I'd make some mommy-friends.  Ryan would stand in line with the other children before class, and I wouldn't have to stand with him or demonstrate how to stand in line or what to do when the line started moving.  He would wear the I-belong-in-this-class button on the front of his coat and without crying about it.  I wouldn't have to run to one side of the rink then the other so my child would focus on skating toward me instead of staring at the rafters.  We would pass for neurotypical for half an hour and top off the experience with some hot cocoa.

I've been trying to remind myself to be proud of Ryan for being able to tell me he wanted to go home.  It would have been more convenient if he were able to tell me he didn't want to skate before we went to the rink and laced up his skates, but I should be proud that he eventually found the words.

Maybe in a few months we can try that again.

Monday, March 1, 2010

McCarthyism

Time magazine recently ran an article about Jenny McCarthy, the mom I love to hate.  She's taking a step back from her anti-vaccine crusade, instead advocating for further research on the subject.  I agree with a scientist quoted in this article: 22 studies have shown no causal relationship between vaccines and autism, and it's time to put our research dollars into other areas, like genetic causes or environmental triggers.

I love this part of the story:
In McCarthy's world, there is scientific truth and there is emotional truth. There is the fact of a mother looking into her son's eyes and knowing something has gone very wrong and the fact of about two dozen studies showing no link between vaccines and autism. There is the truth of the parents and the truth of the doctors. And she believes that some truths are more equal than others. "She's a mom," says her boyfriend, actor Jim Carrey. "That's what she is. That's her truth." It all sounds so reasonable, expressed by the charming, gamine Jenny McCarthy. And this is what makes her dangerous.
As they say, you are entitled to your own opinions, but not your own facts.  This Time article says that something like 20% of American kids are not getting the suggested roster of vaccines, inspired by McCarthy's movement, and diseases like measles and mumps are reappearing for the first time in decades.  I think McCarthy has been irresponsible in her use of her public platform.

But as much as I love to bash her, McCarthy is quoted saying something I believe is a truly important point: "certain therapies work for certain kids and they completely don't work for others."  This is totally true: a spectrum disorder requires a spectrum of approaches.  I wouldn't be surprised if 20 years from now we discover that many of the individuals we have shoved under the autism umbrella actually have been experiencing a variety of diagnoses, caused by myriad genetic abnormalities and/or external causes.

We're finding this even today: the most ironic revelation from this article is that there is even debate as to whether McCarthy's son had autism at all - they say his symptoms (like seizures) seem more indicative of Landau-Kleffner syndrome.

I also learned a new phrase from this article: "Curebie community" - the camp of parents who believe they can cure their children of autism.  I am not a Curebie.  I believe autism is as much a part of a person as his skin color or heritage.  I could adapt to life in the Middle East or a rural village on the Indus River, but I'll always be a white Jew from New York.

I wish Jenny McCarthy's family luck with their journey.  I admit I know nothing about Landau-Kleffner syndrome.  Maybe it is curable. Maybe the hyperbaric oxygen chambers, chelation, aromatherapies, electromagnetics, and spoons rubbed on her child's body have actually cured him of Landau-Kleffner.  But I wish she would stop misinforming and misleading gullible, hope-filled parents of children with autism.