Saturday, October 31, 2009

Happy Halloween!

Ryan did not express any sort of preference for what sort of costume he wanted to wear for Halloween this year, so I decided to go with the penguin costume he wore last year: black pants, white shirt, hooded towel with a penguin face on the hood.  Cute, easy, useful year-round.

This afternoon, I announced it was time to go to our building's Halloween party.  "Can I watch George?" he asked.  No, it's not tv time, it's time to interact with other kids.  We waddled downstairs.

Ryan colored in a ghost, played with stickers, avoided dancing with the other kids, and ran off to the laundry room.  The party was too loud for him.  I think we stayed all of 10 minutes.

I followed him to the elevator, took him home, gave him dinner, let him watch tv.  Then we announced it was time to go Trick or Treating.  He allowed me to dress him, grabbed his big plastic pumpkin, and dutifully walked out the door.  There may have been a little excitement in there, but mostly it seemed like following directions.

Last year, he hadn't seemed to enjoy trick or treating all that much, but at the end of the night he was thrilled, and the next morning he was asking to go trick or treating again. I prepared myself for a similar outcome.  Plus, I reminded myself, he still has a cold.  I keep my expectations low when he's tired.

We followed the other kids from the building to the next block, where the neighbors take Halloween very seriously.  One family creates a very impressive haunted house in their driveway every year; other folks hang out on their front stoops to greet trick or treaters.

We coached him to say "trick or treat" (and not "Can I have candy please?"), take candy, and say "thank you," in that order.  The first house we went to, he walked right in to the living room.  This prompted us to add the instruction, "Then you turn around and walk down the stairs."

After the fourth house, he announced, "I want to go back home now."  We were thrilled that he had expressed himself so well, but we weren't about to let him quit so soon.  We kept going for another block and a half, which included that fantastic haunted house (Ryan was not scared), tiny people dressed as ladybugs and turtles, two slutty teenage Dorothys, and a man in a toga.  We knocked on a couple of doors within our building, then went home.

We showed Ryan how to dump out his loot on the floor.  While Ryan sang a little song to his Skittles, Stu and I tried to remove all items containing wheat: pretzels, Goldfish, Twix, Twizzlers, Whoppers, Kit Kat.  There were lots of questionable items - candies in wrappers "not labeled for individual sale," without ingredient lists or allergen warnings - that we took away just to be safe.  I think we confiscated half of his haul.

Ryan had me open the Skittles.  He put one in his mouth, bit it, held it in his mouth a few seconds, and spit it out on the floor.  Then he tried another one; same reaction.  And another.  And another.  He spit each of them out.  I think he liked the flavor but not the texture, so he was treating them like sunflower seeds: eat the nut, spit out the shell.  Earlier, he had rejected several other candies: he spit out his first bite of Mr. Goodbar and Snickers, and never looked back at either.

And then he discovered the joy of Reese's peanut butter cups.  Which was shocking, because he refuses to eat peanut butter.  He inhaled that thing like there were thieves after it.

He got really happy and silly for about 30 seconds, but the crash was immediate; he was asleep before 7pm.

Happy Halloween!

Wednesday, October 28, 2009

One step forward, two steps back

I've heard that when a kid is working toward a major step forward, he tends to take a few steps back. I guess the brain needs to focus on one area at the expense of others.  If Ryan's recent linguistic success is the step forward, I guess I should just suck up the regression, but man, it's so frustrating.

One major step back: the boy has stopped sleeping.  He has been waking up at 3 or 4am, ready for his day.  He announces this by knocking on thrashing against my bedroom door.  Repeatedly.  At 10 minute intervals.  We walk him back to bed, show him that his special green-means-go clock is still orange, announce that he will lose xyz if he turns on our freaking overhead light again, but nothing has helped. 

Another step back is my favorite subject, Potty Training.  Today we've had 3 accidents so far, and bedtime is hours away.  He is decidedly unimpressed by my offers of chocolate and stickers.

And he has cut back his diet to an even smaller array of acceptable foods.  Soon we'll be down to carrots, bananas, and cheese.

These setbacks may also just be because he has a cold.  Maybe the decongestants wear off in the middle of the night, his sense of taste is off, and he's just too tired and cranky to care if he's wet.  It's probably just that.  But it might be the regression that foreshadows the Great Leap Forward, and how cool would that be?  Imagine if his brain is just working really really hard to figure something out, and in a day or two something will click and he'll be carrying on conversations and understanding "if/then" statements and playing age-appropriate games with other kids?  What if we woke up tomorrow (it's my fantasy, so let's say at 6am) and Ryan were suddenly capable of peppering me with who/what/when/why/how questions?

But more likely, he just has a cold, and in a few days everything will be back to the way it was last week.

But I can dream.

I think my lack of sleep is showing.

Tuesday, October 27, 2009

Shorties: Stop the Presses!

Today, Ryan came home and requested a snack.  After one bite, he announced, "These strawberries are yucky!"

Whoa.

So I gave him an apple.  He said, "This apple is yucky, too."

I am bowled over by the grammar.

Then he found my stash of Dum Dums.  "I don't like this lollipop, either.  Can I have some animal cookies, please?"

Who IS this child?

Is this the upside to his waking up at 3-freaking-a.m. today?

Thursday, October 22, 2009

Alex Barton

Remember Alex Barton?  Alex is autistic.  In the spring of 2008, when Alex was 5 and going through the evaluation process, his mainstream kindergarten teacher grew tired of his autistic behaviors and had all of her students vote Alex out of the class.  They voted 14-2 to exile him, Survivor-style, and the teacher had each student stand before the class and tell Alex why they didn't like him before they sent him out of the room.

Seriously.

So today I read the follow-up to this horrible story.  Alex's mother home-schooled him for first grade, and now in second grade he's on the honor roll in his private school.  The evil teacher got a one-year unpaid suspension (which she unsuccessfully appealed), took away her tenure (which was later restored), and starting this November she will be back in the classroom under an annual contract.

Good for Alex, finally getting the education he deserves.  But this whole story has angered me in ways I'm having trouble expressing.  Stu summed it up best:  he said, "I would have gone in and punched that teacher in the head."

But what's most upsetting to me is the mean, ignorant, hateful comments people wrote after the follow-up story. Of the 36 comments after this article, fully 18 were like this:
.
Why wasn’t the mom more pro active like sitting in class to keep him calm or making sure he wasn’t disrupting the whole class with his inablility to sit still or behave when he was going to public school a system already overloaded with troubled kids it took a private school to help him booo for the post keep bringing him and his lazy mother to our attention.
 or
Great the taxpayers are footing the bill for a kid that’s gonna end up on the dole eventually anyway. Might as well start ‘em young. Soon all the $$$ will be gone and we’ll be hunting each other like rats.
or
Wonder who submitted this to the Post?? The mother is a media whore who will never let this die. There are many kids with his condition that make an “honor roll” somewhere. Why is he so special. Give me break. This will be on the 10pm news for sure with the proud mommy. Geez
or my favorite:
Congratulations to the young man for getting good grades and all the hard work that went into it. However, you will certainly not hear me congratulating the mother. It took her long enough to do something about getting this child into the proper forum where he could learn. My son’s education has been disrupted time and again due to a special needs child in his public classroom. You know who has to come home from work and teach him what he missed in class that day because of the disruptions - yup - me! These parents that insist on mainstreaming their kids in the public school system are not helping them. It should be like it was a few years back - if you need special help or attention you go to a special class. This saves the child from embarrasment and ridicule and the other kids and teachers from costly distractions.
Seriously?

Fuck you, you fucking ignorant, illiterate assholes who are raising the children that my baby will have to deal with someday.

Pride and Prejudice

Seemingly overnight, something has clicked, and Ryan is asking for the things he wants - in sentence form.

"Can I have more milk please?"

"Can I have fire please?" (This meaning, "Light the fireplace.")

"Ask calmly, can I play a George game?" (This one follows my asking him, "How do you ask?")

Hallefreakinglujah.

I'm really proud of him.  We're asking him to learn so many things at the same time, and he's really putting it all together.  When a kid takes his ball, Ryan remembers to use words to demand its return; when he wakes up at some stupid hour of the morning, he usually remembers to stay in his room until his clock lights up green; today he only needed to be prompted once to provide the correct response when Stu said, "Goodbye, Ryan."  I've been feeling pretty good about the direction things are going here.

So I thought we could handle a playdate with Grace.  We got to the park first, of course - it's much easier for us to get in the car and drive 20 minutes than it is for a 38-months-pregnant woman to get an almost-4-year-old and an almost-2-year-old across the street.  While we were waiting for them, Ryan slipped on some gravel and sliced his palm open pretty badly.  I dragged him across the street to Dana's house to clean the wound.

Grace came to the locked screen door.  "We're meeting you in the park, not here," she pointed out.  I told her to get her mother to open the door.  While I was washing Ryan's hand, Grace told me, "When I was a baby and hurt myself, I didn't cry."  I assured her it's perfectly ok to cry, and resisted saying "I've known you since you were a baby; you totally cried."

When we all finally got to the park, Ryan was still sulky and in pain.  He was gripping a paper towel (because he hates band aids) and trying to climb ladders without using his right hand.  Dana suggested Grace go on the slide with Ryan; Grace started whining.  Then little Stella was having a fit about the swings, so Dana and I couldn't exactly just sit and chat.  When we did start having a conversation, Grace needed to get in on it.  "Do you know my friend Elana?" she asked me.  "Well, we went to..."  I must admit I wasn't listening.  "Are you eating dinner?  At the house?  I want you to eat dinner at our house!"

Ryan came to me and asked me for his juice.  I alerted Dana to how well he had asked, and started to gush about how well he's been doing with things like that.  She nodded and smiled, but clearly didn't really understand what I was so excited about.  I said, "I know this is all stuff that Stella has probably been doing for a while."

"Yeah," she agreed.  Her seeming inability to grasp what a big deal this was hung in the air.

I engaged the kids in non-verbal activities, like rolling down a hill.  Then Grace announced, "I think it's time for the girls to go into a meeting."  As Ryan was the only boy around, this was clearly a rejection of him.  Ryan was still miserable because of his hand, and I wasn't much happier, so shortly after this, we left.

Why the hell did I think that playdate was a good idea?  I should have listened to Ryan when he told me he wanted to go to a different park.

Which brings up another thing that impresses me: I love how Ryan can distill the essence of something and express it to me in a single word, said in such a way that I know exactly what he's talking about.  The park he wanted to go to has a big playground, fields, a large pond, and a small stream with a wooden footbridge across it.  He likes to throw rocks into the stream and chase geese across a field.  He calls this park "Water."  The park across from Dana's house has a small playground at street level, a giant boulder to climb, a steep hill that leads to a tennis court, and baseball fields; he calls this park "Hill."  The simplicity is elegant, almost haiku-like.

I don't think Dana would be impressed by this, either.

Monday, October 19, 2009

Behavior Management

Ryan's fabulous school hosts a series of parent workshops - they even offer free babysitting during the meetings.  Last week I went to the first session, entitled "What Do I Do When...? Understanding and managing your Child's Behavior."  What parent couldn't use that workshop?

I'm happy/disappointed to report that Chrissy had already taught me all the techniques that were discussed, so while I can pat myself on the back that I'm heading in the right direction, I can't say I walked away with any significantly new ideas.  But hey, I can share the bullet points with you.

The key seems to be recognizing that your child's tantrums and other strange behaviors are attempts at communication, albeit not the best ones.  You just have to interpret what the kid is trying to tell you, then teach something in place of the behavior you don't like.  Gee, that sounds so easy!  So why does it take so freaking long to get results?

The behavior expert, Ann-Marie, asked us to consider what triggers set the behavior in motion.  Common triggers are demands placed on the child; not knowing what to do with unstructured time; transitions or changes in routine; environmental factors (too hot, too loud); or medical issues.  She also had us consider the functions of troublesome behaviors: is the child trying to escape or avoid something he doesn't want to do?  Is he seeking attention?  Is he requesting something he just can't have?  Is he stimulating himself?

Ann-Marie warned that you shouldn't try to eliminate all annoying behaviors at the same time - the kid will get stressed out and confused.  Instead, she suggested a triage system.

I must admit I was really enjoying listening to the other parents discussing the behaviors they face at home: a 3 1/2 year old boy who is so obsessed with the cable guide channel that he rides his bike to Grandma's house to watch it; a child who gets hit by other kids because he has no sense of personal space; a boy who will eat no veggies or fruits except for apple juice.

So now I'm trying to figure out which of Ryan's troublesome behaviors to address first.

There's the spitting.  When Ryan doesn't like a food, he spits it out, dramatically.  We've tried to teach him to spit into a napkin or onto his plate, but he often spits it on the floor (and then we make him clean it up).

There's the burping.  Ryan recently figured out how to make himself burp, and I guess it feels good to him, so he will sit there burping for minutes at a time, often while I'm trying to read him a story.  It's annoying.  When I tried alerting him to the fact that I found his burping annoying, he just did it more, so we've been trying to ignore the behavior altogether instead; little progress so far.

There's always the tv tantrum - that falls under "inappropriate request."

And going back to table manners, I'd love it if the boy would wipe his hands on a napkin instead of on the underside of the table.

I suppose scripting and stimming should be on my list of "problem behaviors," but they don't really bother me most of the time, and I don't think they hurt anyone, so that's an easy one to leave at the bottom of the list.



Where oh where to begin?

Thursday, October 15, 2009

It's all guesswork in a white coat.

"I'm glad I didn't listen to you."

Ryan had his annual check-up today, and this is how I opened the conversation with Dr. Handsome.  Ryan has been seeing the same pediatrician since the day he was born. I like him, I trust him. He approaches parental freak-outs with either a "don't worry, this happens all the time" or a "this is what has worked for me with my kids, maybe it will work for you" approach. And you can always reach him or one of the other doctors in his practice on the phone at all hours of the night.

Last year's check-up was maybe a week after Ryan's Board of Ed evaluation, but before he had started receiving therapies. I was raw. I told the pediatrician what was going on, and he said, "You know your child best, but he's interacting very well with me, he's using words.  Evaluations can't hurt, but I don't think he's a spectrum kid." This was nice to hear, and I left the doctor's office a little more calmly than I had entered.

Then came the storm of professionals telling me my baby was abnormal: developmental pediatrician, speech and language pathologists, occupational therapists, teachers, special ed teachers, social workers.  They all agreed that his speech and social behavior were delayed.  They all agreed that he probably had PDD.  They handed me photocopies of photocopies of "Welcome to Holland."

As the storm passed and I educated myself a little, I realized how little our pediatrician knew about autism. I began to question other advice he had given us over the years.  Knowing that Ryan had reflux, constipation, and eczema, why didn't he recommend we have him tested for a milk allergy?  Should he have noticed the developmental delays? I recalled the moment I came to the terrifying realization that my parents were merely human and didn't have all the answers. And I kicked myself for trusting that any one doctor could have all the answers I would ever need. I realize this is something of a parlor game, like Find the Autism, but it's a little different, because while we can't change the past, we can always find a different doctor.

So today when we went in for Ryan's four-year check-up, I felt the need to inform Dr. Handsome that he had missed some signs. I wish I could say it was for altruistic reasons, like, "maybe he'll be more aware of XYZ in the future and will be able to help another patient get services sooner." I wish I could say that, but really, I just felt the need to call him out.


"I'm glad I didn't listen to you when you said Ryan was fine."

He became understandably defensive of his practice. "I would never tell someone not to get therapy if they needed it!"

"But you did say you thought he was on track."

"At 18 months, he was labeling his toy animals, making eye contact..."

"You said this when he was 3."

I decided to let it go at that point. He hadn't see the signs, just like I hadn't seen the signs. But part of me feels like someone with years of medical training should have seen them.

Dr. Handsome looked in his ears, tapped his knees with a hammer, gave him shots, asked the usual questions. As he finished up, at the point when he would usually say "Everything looks great, see you next year," he said, "I'm certainly glad he's getting the help he needs."

I crumbled a little inside. Ryan's developmental delays and abnormalities are now so obvious, there's no pretending he's typical.




Thursday, October 8, 2009

right idea, wrong language

Health and Human Services Secretary Kathleen Sebelius wrote a Yahoo News op-ed this week about the Obama administration's commitment to autism research, doubling research funding and preventing private health insurance companies from denying coverage to individuals because of their autism. I applaud this effort, but question her language and the thinking it reflects.

In this op-ed, Sebelius writes (italics are mine)

Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now....
Granted I am coming at this from the perspective of a mother whose child is very lightly touched by autism, but I don't think autism is something to be combated or prevented.  Yes, being neurologically different from ones peers makes life more challenging, but in addition to the many deficits that come with autism come many strengths - even genius.  Many studies have suggested a link between the autistic brain and musical, mathematical, and other intellectual ability.

I don't think it's in the public interest to eradicate autism, and with it some of our world's brightest innovators.  I know it's a parlor game to speculate on which historical geniuses were autistic, but some commonly-cited examples are: Einstein, Mozart, Orwell, Warhol, and Darwin.


Going back to Kathleen Sebelius, she writes (again, italics mine):
Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism.
Autism is not a disease; it is a neurological difference.  You can't catch autism like you can catch AIDS or polio.  Yes, more people are being diagnosed with autism today than ever before, but that doesn't mean autism is more prevalent.  It means we're re-categorizing previous diagnoses - kids who were diagnosed with severe language disorders or who would just have been considered socially awkward 10 or 20 years ago are now being diagnosed on the spectrum.  And it means we are perhaps more aware of neurodiversity, and are realizing the need to apply more resources to supporting children's education and development. 

I've recently learned that my point of view puts me in the "autism rights movement."  It's the opposite of the Autism Speaks / Defeat Autism Now camp.  It's the belief that autism is an innate part of a person, like his sexuality or skin color, and that autism should be accepted and accommodated rather than "cured."  I didn't know there was a movement, but I'm happy to move along with other like-minded folks.

Sunday, October 4, 2009

A very big deal

I had this happy, inspiring post percolating in my head.  I wanted to tell you about this awesome new thing Ryan has started doing: while having a crying fit, writhing on the floor, he will choke out the words, "I'm so sad!"  It's heartbreaking, but totally exciting: he's labeling an emotion, and using words to tell us how he feels.  Last night at bedtime, he launched into Standard Meltdown #6 (the I-want-to-play-Curious-George-computer-games tantrum).  Usually during this type of fit he will just chant "Play a game of George" ad nauseum while crying, but last night, in the midst of it, he said, "I'm so sad!  I miss my George!"  Booyah!  He used words to both label an emotion AND tell us why he felt that way.  AND he added the idea of possession to it: it's his George.

So I was thinking about what a big deal this is, and how much I freaking love the new speech therapist, and about how far Ryan has come, and I was going to launch into the blog equivalent of the heavens opening and the Israelis and Palestinians joining hands to sing Kumbaya.

But then I got sulky.

After a rocky morning at home, I brought Ryan to the playground today, where I encountered a tiny little girl, maybe 2 1/2 years old, joyously playing on her own, initiating full-sentence, totally-intelligible conversations with her parents, out of diapers, showing no signs of resistance when told it was time to leave, and her utter normality slapped me across the face.  She was no different than any of the other neurotypical children in the neighborhood, so I'm not sure what triggered my reaction.  Maybe it was her size: seeing someone so tiny who is able to outperform my 42" tall four-year-old in so many ways was jarring.  Maybe she was just the proverbial straw.  My chest suddenly felt heavy.

When we got home, there were assorted tantrums, chewed up bits of dinner spit all over the living room, and more than a few child-inflicted maulings.  Eventually we got up to Standard Meltdown #6.  He ran to his room, wailing.  I lay down on the floor in our office, breathed deeply, and let my eyes leak into the carpet.  Then from down the hall, I heard:

"I'm so sad."

I went to Ryan's room and lay down on the floor with him.  I hugged him tightly, and he stopped crying.  "I get sad, too," I told him, sobbing into his hair.  "Sometimes you can't get what you want.  It's ok to feel sad sometimes."

I wiped his eyes.  He kissed my nose.

Friday, October 2, 2009

Giving Thanks.

I'm feeling very fortunate.  I have so much to be grateful for.

I am grateful that there are wonderful people looking out for my kid.  Yesterday I got a call from the speech therapist.  She wanted my permission to petition the school board to let Ryan have an additional weekly session with her, because he's doing so well she thinks he would benefit from more one-on-one time.  And Ryan's itinerant teacher wants to visit the school because she's concerned that Ryan might be ill-served by a class that has several non-verbal kids in it.  Who would turn down these offers of help?

I am grateful that we can afford for me to be unemployed. We are so fortunate that Stu's job is secure and we have savings to draw from.  I have a few opportunities on the horizon, but I'm not in a position where I have to jump on any old out-of-field gig.

I'm grateful for my family.  I hear so many horrible stories about families who jump ship when a child has special needs - grandparents who blame their child or child-in-law for the grandchild's problems, couples who divorce because they blame each other for their child's condition.  Our families are totally on board for this journey, and I don't take that for granted.

What are you grateful for?