Wednesday, December 30, 2009

Happy New Year

It's been a rough year here.  A year ago we were just a few months past The Diagnosis, and I was completely lost.  Swimming in research, alien acronyms, byzantine evaluation processes, and all sorts of troublesome behavior from the kid, the last thing on my mind was celebrating the new year.  I stared blankly at the dozen or so displays of fireworks  visible from my apartment window, bemoaned that that's a lame way to watch fireworks (I prefer being close enough to get hit by hunks of cardboard shrapnel), and cried myself to sleep, thinking about what my life was supposed to be like.

I'm a year wiser, a year more mellow.  This year has been a journey inward for me.  Ryan is absorbing the lessons of his therapies beautifully, and he has certainly changed a lot this year, but I have, too.  I have become more patient.  More tolerant.  I'm closer than ever to accepting that there are things I just can't control.  I've learned that there's more than one way to have a good time in a sprinkler.  I've learned who my real friends are.  And of course I've learned more than I ever wanted to know about PBS Kids shows.

I've discovered that as different as Ryan seems, his special traits run through all of us.  In learning about sensory issues, Stu has come to recognize that he has been living with sensory integration dysfunction all his life.  He has always been hypersensitive to taste, smell, sound, and light, but never understood why.  My mother has diagnosed my father as having traits of Asperger's.  While she teases him a little and enjoys calling him "Spectrum Boy," she admits that seeing him through this new lens blunts some of the frustration she has felt over the years; she no longer takes personally his occasionally inappropriate reactions or what she once perceived as his lack of empathy.

I look at my husband and my dad and their perfectly ordinary adult lives and I am infinitely more hopeful for my son's future than I was a year ago.

This year I will once again be in my own living room as the ball drops, but I will be content.  I won't need a fancy party for my celebration.  I won't need to hire a babysitter and escape to find happiness.  I will drink my rum and Coke and play Wii bowling in my jammies and watch a dozen fireworks displays from my apartment window and marvel at how much I have grown this year.  And that will be good enough.

Thank you for being a part of my journey.  Writing this blog has been a valuable, cathartic outlet for me.  And I find knowing that folks are reading of our adventures on six continents pretty exciting and awe-inspiring.  Wishing you all a happy and peaceful new year!

Monday, December 28, 2009

Ode to a Weighted Blanket

There are lots of scams out there targeting parents of autistic kids.  A desperate parent can be lured into trying all sorts of quackery and questionable treatments in an effort to help her child - hyperbaric oxygen therapy, mercury chelation, cycles of intravenous immunoglobulin.* 

But let me tell you about a simple treatment we swear by: a weighted blanket.

Individuals with sensory integration issues often have trouble feeling where they are in space.  Applying extra deep pressure touch stimulation releases serotonin in the brain, resulting in a natural feeling of calm.

When Ryan is having an inconsolable meltdown at home and all my usual tricks fail, I lay a five-pound lap-size blanket over him, and he quiets down instantly.  He could be wailing, screaming, dripping with snot, completely unresponsive to reason, and as soon as the blanket touches him, he can breathe.  He has been known to go from manic to asleep in five minutes flat because of this blanket.

The blanket is magical.  All hail the power of the blanket!


* For more information on discredited treatments, please see Autism Watch.

Saturday, December 26, 2009

Our Awesome Month

I upload the pictures and movies from my digital camera and scans of Ryan's artwork to my external hard drive and sort them into folders by month - the photo album of the modern age.  A typical month will take up like 250MB.  December has been busy - 1.1GB busy.

First there was the Gingerbread House Incident.


We took Ryan ice skating for the first (and second) time.  He loved it - I think we're going to sign him up for lessons.  By his second time on the ice, he could take a few steps without holding on.  He even loved falling down.


We went to a birthday party at which Ryan totally passed for normal - played all the games, wore the ice cream, had a great time.

Then there was our extended family's Chanukah party, at which he played beautifully with his cousins and tolerated the, er, extreme volume level my family tends to produce.


Then there was Chanukah.  We don't really pay as much attention to Chanukah as we do to Christmas, but we gave him his first and second guitar (the first one exploded the first time I tried to tune it).


There was the joy of the Christmas season:

Another birthday party, with the added bonus of hypoallergenic cake:


We went to the Mermaid Theater of Nova Scotia's production of The Very Hungry Caterpillar.  He was on the edge of his seat the whole time.

We met Bob from Sesame Street.  BOB!  I was way more excited about this than Ryan was.

There was the first big snowfall of the season, during which he enjoyed sledding, even when he got snow in the gap between his glove and his sleeve.


And Christmas, of course.




The Captain has glowed this month in all his awesomeness.  And he's cute, too:




Happy Holidays!


Friday, December 25, 2009

Tommy, Can You Hear Me?

I'm a Jew who was raised celebrating Christmas - the beautiful pagan winter solstice holiday, not the birthday of Jesus.  I love decorating our Christmas tree, the futile search for a gift my dad will actually like, the FonJew party we throw every Christmas Eve.  I recently met another Jewish woman who was also raised embracing Christmas, but when her father decided he could no longer justify celebrating the birth of Jesus, her mother did some research, and since then they have celebrated the December 25th birthday of Reuben Mattus, founder of Häagen-Dazs.  Freaking awesome.

In my family, holidays can be somewhat arbitrary - Thanksgiving may fall on a Friday, Chanukah has been known to come in February, and New Year's Day 2010 is coming on January 3rd.  This year, though, is the first time that Christmas has been tampered with - the plan was that we would move Christmas to Sunday 12/27 so we could include some out-of-town cousins in our traditional Jewish Italian Christmas dinner.  So this morning I woke up on everyone else's Christmas, and I didn't know what to do with myself.  It was kind of a let-down.  I contemplated the traditional Chinese food / movie combo enjoyed by the rest of the Tribe, but I couldn't think of any G-rated movies out now that I actually want to see.
Did you ever see the faces of the children,
They get so excited
Waking up on Christmas morning
Hours before the winter sun's ignited.
They believe in dreams and all they mean
Including heaven's generosity.
Peeping round the door
To see what parcels are for free
In curiosity.
Around 9am, my mother called.  I guess she was feeling as out of place as I was, because she announced that Santa had come to her house, and wouldn't we like to come over this morning.  Yes, yes we would.  Moving Christmas just didn't feel right.

So even though I had been telling Ryan that Christmas was still two days away, I announced to him, totally suddenly and without further explanation, "Hey, Santa came to Grandma's house!  Yay, it's Christmas!"

"It's Christmas," he repeated, with the same level of enthusiasm he would produce if I told him we were going to the supermarket.

This is an instance where Ryan's autism is convenient: he doesn't appear to anticipate events. He hasn't been counting the days to Christmas.  I don't think he has any idea that other kids make lists for Santa and beg for coveted toys.  As far as Ryan is concerned, Christmas is whenever I say it is, and I doubt that if we had let him know that last night was Christmas Eve he would have stayed up trying to spot Santa's sleigh flying through the sky.
And Tommy doesn't know what day it is.
He doesn't know who Jesus was
Or what praying is.
How can he be saved
From the eternal grave?
While convenient, this is also disappointing.  I want Ryan to love Christmastime as much as I do, as much as millions of children all around the world have for hundreds of years.  I want him to be able to anticipate the near future, to tell me what he wants, to share a common experience with other kids.  Perhaps predictably, he enjoyed the act of unwrapping presents more than he seemed to appreciate the contents of the boxes.  He spent much of the morning running away from the festivities to play with his old, familiar toys - it was actually hard to convince him to come back to the living room with us at all.  He had a perfectly fine time, but I don't know if he realized it was a special occasion.  At the end of the day he didn't resist leaving Grandma and Grandpa's house and promptly fell asleep in the car, no traces of the residual excitement that might keep other kids bouncing off the walls.

Monday, December 21, 2009

Delayed Gratification

One strange thing about raising a child with developmental delays is the odd combination of pride, embarrassment, and wistfulness you experience when your kid finally reaches some totally common milestone.  In the last 24 hours, my four-year-old has discovered the joys of both squirting bath toys and playing in cardboard boxes.

Yeah, people always remind me how far Ryan has come, and they always tell me to ignore milestones.  But dammit, playing in a cardboard box is one of those basic toddler occupations and it's hard for me to accept that my kid hasn't been developmentally "ready" to play in a freaking box until now.  It's somehow easier for me to accept that he has been late to come around to squirty bath toys: there's the motor skills required to squeeze the ducky; the aversion to the sensation of the squirting water; the order of operations involved in filling, emptying, and refilling the ducky... 

I think back to when Ryan was a year old and still wasn't feeding himself Cheerios, and the joy we felt when, at 13 months, he finally put a piece of bread into his mouth on his own.  We didn't know at the time that this was going to be just the first in a series of uncomfortably ecstatic moments -  being as excited as you can that your child is doing something he "should have been doing" months or years before.

I hadn't even realized that Ryan had never really thrown himself into a cardboard box until I saw him do it this evening.  The box he chose: a four-inch-deep Amazon.com box designed to hold two or three books.  He tried to crawl into it, broke it, made me tape it back together.  I found a larger box for him to play with instead; he climbed right in and covered the box with his blanket.

Just like a real kid.

Tuesday, December 15, 2009

It's Okay to Have Autism

I've been thinking a lot about this book I want to write, so I've been looking into what's out there.  First I was just looking for children's books that tell autistic children about their diagnoses.  But today, I stumbled upon various online conversations among parents of autistic children, discussing when and how to explain all this, and it makes me think I'm in way over my head.

These were conversations among parents of older children and tweens.  Many of these kids were tweens before their parents started having The Talk.  Many of the parents repeatedly asked their children over the years if they wanted to know why they went to a special class, or why they were different, and reported that their children didn't seem interested in the subject until they perceived that they were unusual, generally after age 9 or so.


The National Autistic Society (UK) offers, not very helpfully,
It is a very personal decision as to when families decide to tell a child about their diagnosis it all depends on personal circumstances. Some children are told when they are young as they become aware of their differences. In other cases parents/carers feel they should wait until their child is a little older so they will understand the diagnosis better.

I know there is much debate over when to tell a child he is adopted, but the approach that always made sense to me was for the adoptive parents to talk about it from day one, making "adoption" a regular part of the child's vocabulary.  Even if the child won't understand the concept for several years, he won't wake up one day and suddenly be informed that his parents aren't his birth parents, and that everything he thought was true somehow wasn't.

Intuitively, I feel like telling a kid he has autism should work similarly.  This will be a conversation we have over and over throughout early childhood until it makes sense to Ryan.

And yet.

Last night at bedtime, I was reading Ryan "The Okay Book" by Todd Parr.  It's a very simple book about accepting differences.  "It's ok to be short.  It's ok to be tall.  It's ok to wear two different socks.  It's ok to be a different color.  It's ok to put a fish in your hair."  It occurred to me that it would be appropriate to insert, "It's ok to have autism," but the words caught in my throat and I choked and just stuck to the text.  Why was that so hard?  Was it just because there was no cute little picture to point to as I said it?  Was I being self conscious?  Was it just too much to deal with at bedtime?  I use the word "autism" in Ryan's presence all the time, so why did I feel so strange about throwing it into his bedtime story?

It's definitely ok to have autism.  It's ok to be different.  I don't know about all that putting-a-fish-in-your-hair business, but maybe that's just my own bias.

Friday, December 11, 2009

An Odd Reading List

I'm looking for a picture book to read with Ryan to introduce him to the idea that he has autism.  I want to lay the groundwork early so he will grow up understanding that there's a reason some things are harder for him than for the other kids at the park - that he's not stupid - and that there are lots of other people in the world with similar challenges.  I want him to grow up knowing there's no shame in being himself, no matter how other kids may treat him.



If you search the Children's Books listings on Amazon.com for "autism" you turn up 759 results.  Not all of these are actually books FOR children - many are aimed at adults teaching ASD kids or teaching neurotypical kids about autism.  But there are quite a few picture books out there.

Many of these are targeted for typical siblings of kids with autism: "All About my Brother," "Autism and Me: Sibling Stories," "My Sister has Autism," and so on.

Some are aimed at typical kids who may encounter an autistic child at school.  They have titles like "The Autism Acceptance Book: Being a Friend to Someone with Autism" or "A is for Autism, F is for Friend" - titles that sound like the Brussels sprouts of literature: I'm sure they're good for you, but I don't know if I could get past my gag reflex. 


Then there are books that seek to explain autism to adults, which for some reason come up in a search for children's books:  "Ten Things Every Child with Autism Wishes You Knew" and the like


There are some exciting-looking stories told from the perspective of an ASD kid, appropriate for older children and teens, like Baj And the Word Launcher: Space Age Asperger Adventures in Communication  or "In His Shoes: A Short Journey Through Autism" (looks very promising).  I don't know what population they are marketed for.



There are very few books for autistic children.  Searching Children's Books for "autism, ages 4-8" produces 67 results on Amazon, but a very small fraction of those would be appropriate for a kid like Ryan.  Here are the more promising-looking ones, mostly for ages 4-8:
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism by Elaine Marie Larson and Vivian Strand
Different Like Me: My Book of Autism Heroes by Jennifer Elder and Marc Thomas

Why Does My Belly Hurt? A book for Children with Autism and No More Macaroni and Cheese. A book for children with Autism. by Janelle M. Love, MD, and Kim Taylor  - these explain the GFCF* diet and why it is important to stick to it.

When My Autism Gets Too Big! A Relaxation Book for Children with Autism Spectrum Disorders by Kari Dunn Buron

Disabled Fables: Aesop's Fables, Retold And Illustrated By Artists With Developmental Disabilities  
 

 
While there may be 700+ titles on Amazon, the only one of them I've seen at my local book store is "My Book of Autism Heroes."  It's cute, but Ryans a good 5 years from being ready for it.

So I think I've found a niche that needs filling.  Any illustrators out there want to chat with me?

 


* gluten-free, casein-free (no wheat, no milk)

Wednesday, December 9, 2009

Freaking out a little

I'm swimming in alphabet soup.

Today I met with the CPSE* for Ryan's IEP** review.  The CPSE chair had been on maternity leave, and absolutely nothing happened in her absence (someone was assigned to cover her duties, but SHE was out for a month on disability, and nobody covered her), so this was a meeting to address issues that had come up at the end of the summer.  Ryan's speech therapist wanted to be able to provide him with an additional weekly session, and I wanted the school district to pay for SEIT*** services again (SEIT coverage had been cut off when Ryan moved from half-day to full-day school).

These meetings are always attended by what I imagine is the full Committee, but I don't understand why all these people need to be there.  At this meeting were the Chair, the school district psychologist, a general education teacher (not a teacher who has ever met my son), the social worker from Ryan's new school, and the Additional Parent Member.  This last one has baffled me from the beginning - he never speaks, I know nothing about him or his child, but I think he's supposed to be there to stand up for me.  The only people who speak are the Chair, the social worker, and me - the other three just sit and stare at me and sign the paperwork.

The meeting was fine, we got everything I wanted.  Then the Chair gave me something to worry about: kindergarten.

"I just want you to know that the cut-off is December 31st."  Ryan's birthday is at the end of September, so this means the school district will consider him eligible for kindergarten this coming school year, when he's still 4.  I've been working under the assumption that (if we're still living here then) I would hold him back and not send him to kindergarten until he's 5-going-on-6.  The problem with that, the Chair told me, is that once the school district considers a child kindergarten-eligible, he can no longer get services through the CPSE; responsibility moves to the CSE****, which would not provide services in a preschool context, and would only be responsible for in-district services.  In other words, if I hold him back for another year before starting kindergarten, I will have to pay out-of-pocket for preschool, speech, and OT*****, and if we choose a school that is not within our city's limits, things will get very complicated, and the CSE will not be responsible for anything.

The Chair recommends planning on sending Ryan to kindergarten when he's still only 4.  I find this idea frightening: in an era when parents of NT****** kids are delaying when their children start kindergarten so they'll have an academic advantage, and when children are expected to know how to read in kindergarten, Ryan will be at an even more severe social disadvantage than he would be if he were the same age as the other kids.  He speaks maybe at the level of a 2-year-old, and his social skills aren't much beyond that, either.  How can I plan on throwing him into a room with typically-developing kids who are as much as two years older than him?  Kids that age are cruel under the best of circumstances -  but God help a kid with an ASD*******.

When I was in elementary school I was one of the quiet kids, but I remember what the more outspoken kids would say to the special ed kids: Stupid.  Retard.  And the stigma usually stuck through high school graduation, even if the kid had long since mainstreamed.  The one exception I can think of was a kid who could not speak.  On the first day of sixth grade, our homeroom teacher sent him out of the room to take something to the office, and she gave the rest of us a lecture about what was wrong with him and how we were going to treat him with respect and kindness.  That boy wound up being reasonably popular.  The rest of the special needs kids, not so much.

I need to read up on the VESID******** laws - hopefully the NYSED********* website will be more helpful than it appears at first glance.

OMG...

* Committee on Preschool Special Education
** Individualized Educational Program, mandated by the IDEA ********** to provide FAPE***********
*** Special Education Itinerant Teacher (aka Chrissy)
**** Committee on Special Education
***** Occupational Therapy
****** Neurotypical
******* Autism spectrum disorder
******** Vocational and Educational Services for Individuals with Disabilities 
********* New York State Education
********** Individuals with Disabilities Education Act
*********** Free Appropriate Public Education

Sunday, December 6, 2009

Exceptionally Normal

Today was a fantastic day, full of exceptionally normal behavior from Captain Awesome.

In the morning, we went to Ashleigh's fourth birthday party, and Ryan was pretty much indistinguishable from the other kids.  He ran around when everyone ran around; he glued foam thingies onto a picture frame when everyone else was gluing foam thingies; he played the party games like all the other kids; he ate his ice cream with a spoon which he held in the typical fashion; he sat on Santa's lap and gave a high-five to Rudolph (the unfortunate dude in the costume with the light-up nose).  I was able to chat with the other moms and didn't have to chase Ryan around or sit with him in a corner.  It was delightful.

In the afternoon was my extended family's Chanukah party.  Ryan slept in the car the whole way there, and woke up as we were parking.  He didn't need any warm-up time before launching into the crowded, loud family shindig.  He played appropriately with his cousins; he answered properly when relatives asked him how old he is; he shared toys; he gave Grandma a zillion kisses; he didn't have a single fit of any kind.

Passing for normal - that's the goal.  There were people we didn't know at the birthday party, and I'm pretty sure that unless they heard Ryan speaking, they had no idea there was anything at all unusual about him.  My cousin had been debating how to explain to her five-year-old son that if Ryan didn't want to play with him that it wasn't personal, but Ryan played beautifully with Dylan, so she never had to have that conversation.  That's a fantastic feeling - not standing out, not being stared at, not having to explain anything.

I picked up on certain subtly odd behaviors this morning, but I think they were probably SO subtle the average parent wouldn't have noticed them at all.  Like, when Santa arrived at the birthday party, Ryan wandered up to him and poked his sleeve, then walked away, then wandered back to him and poked him again, and left again.  Eventually I guess he decided that this Santa guy was safe and he sat on his lap.  But I doubt anyone but me thought twice about the Santa-poking incident.

I'm so proud of this kid.  He's figuring out how to deal with his world while still being his amazing self.  Good job, Captain!

Wednesday, December 2, 2009

Shame on New York

This has nothing to do with parenting or autism, but dammit, it's important.

I am mortified to be a New Yorker today.  Our state senate defeated a bill that would have allowed for marriage equality regardless of sexual orientation. The State Assembly had already approved the legislation - 88 to 51 - early Wednesday morning, and the governor had said he would immediately sign the bill if it made it to his desk, but NY law somehow required another round of voting, so Wednesday afternoon the Senate defeated the bill 38-24.



First Amendment: Congress shall make no law respecting an establishment of religion...
 The argument against gay marriage is usually a religious one -  that homosexuality is an abomination against God, or that God decreed that marriage should be between a man and a woman.  It is not the role of the U.S. government to impose Christianity (or any other faith) upon its people.  And all that "sanctity of marriage" bullshit?  Don't tell me that heterosexual quickie 24-hour Vegas marriages, rampant heterosexual divorces, and far-too-common heterosexual infidelity are sanctified activities.  And for those who argue that God declared the purpose of marriage is to bear children: should all childless-by-choice heterosexual couples be denied the right to marry?  How about infertile people?

[An aside, this is also the root of my problem with the anti-choice movement: the Catholic Church might say that life begins at conception, but the rabbis teach us that life begins when the baby's head crowns.  The "pro-life" camp seeks to impose its definition of when life begins upon the Jews and any other non-Catholic group that might have its own opinion.  But I digress...]
14th Amendment: No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States
 I do not understand why civil rights should be subject to voting at all.  Substitute the word "interracial" for "gay" and it's obvious what we're dealing with here.  I don't care if individual churches refuse to recognize a marriage between two women, but I care deeply that the right to a legally-recognized marriage - and all of the benefits that go along with one - is being denied to 10% of New York State's citizens.

And just to tie this all into parenting for a moment: I pray that if someday (far, far from now) my son announces that he has found someone with whom he wants to spend the rest of his life, and if that person happens to be a man, he will be afforded the legal protections that Stu and I enjoy.

Monday, November 30, 2009

Future Shock

I tend to avoid thinking about the future.  Even the fairly-near future is a little too much for me sometimes.  It's not just that I'm living in the moment - I think I'm too scared to imagine Ryan's life more than like six months from now.

Recently, someone asked me if we would be enrolling Ryan at the local kindergarten for next fall.  "The deadline is coming up," she warned.  This sent me spinning.  This coming Labor Day, Ryan will still be four, and with his delays maybe he'll be up to the level of a three-year-old, so no, we will wait another year before sending him to kindergarten, and hopefully by the time kindergarten time comes around we will have moved; so then I start thinking about where we might move, how long our apartment has been on the market, how much longer it could remain on the market, whether  Stu will slip into another depressive funk about how long the apartment has been on the market...

Yesterday Ryan and I went to the nature center.  We walked on the trails, visited the chickens, prairie dogs, and turkeys; Ryan was disappointed that there were no lions.  We made our way to the indoor exhibit, where there are tanks filled with turtles and frogs and lizards and the occasional furry critter.  Some teenage volunteers were sitting around, blocking the view of several tanks; one of them was holding a large snake.

I asked Ryan, "Do you want to pet the snake?"

"Snake," he echoed, but when he says it, it sounds more like "Sny-yick."  One of the teenagers muttered under her breath, "sny-yick," clearly more in a mocking way than an oh-that-little-kid-said-something-cute way.

I chose not to respond to her, but in my mind, I flashed to my baby as a fifteen-year-old, still several years delayed, getting teased by his neurotypical peers in high school.  Then I flashed back to being 15 and being teased for my untrendy clothes, my attempts at an authentic accent in Spanish class, my unusual personality.  I remembered sitting in the hall before school and asking a passing teacher, "Do you have the time?" and her curt reply: "Yes, but probably not for you."  I remembered recess in elementary school, standing against a wall as kids threw their backpacks near me and said, "Watch my stuff while I go play," and believing I was actually obligated to do so.  I remembered the boy who called me from a sleepover party to pretend to ask me out, his friends laughing in the background.

Nothing good comes of my thinking too far ahead.  The little I'm sure of about the future frightens and upsets me.  Ryan WILL be different from the other kids.  He WILL be delayed.  He WILL be at a social disadvantage.  He WILL get teased and bullied.  And he WILL have to figure out how to make it through each school day on his own.  It WON'T be easy.

Now, when kids tease Ryan, I can step in, or remove him from the situation, or teach him what he's expected to say or do.  But he won't be four forever, and the world's expectations of him are going to change soon, and I'm afraid for him.

Friday, November 27, 2009

Medical Marijuana and Autism

I've been reading a lot of testimonials from autistic adults and parents of autistic kids who swear that medicinal use of marijuana has reduced their gut pain and constant anxiety, reduced the occurrence of aggressive/violent episodes, reduced hypersensitivity, increased focus, and improved sociability.  The down side: marijuana increases perseverative behavior, tics, and some other non-violent symptoms of autism. 

Proponents of treating symptoms of autism with weed (as a medicine of last resort) note that marijuana is relatively safe, while commonly-used psychotrophic pharmaceuticals like Risperdal have a wide range of highly-toxic side effects.  There is also a manufactured drug called Marinol which contains synthetic THC - one of the 60 naturally-occurring cannabinoids found in marijuana.

For obvious reasons there are few good scientific studies on this subject, but I'm fascinated by the anecdotal evidence.  It makes sense to me that a brain that is wired differently than a neurotypical brain would also process drugs in a different way.  And it makes sense that if an autistic person is more relaxed he will be more receptive to communication and learning and all those things we expect people to do in society.  I have no doubt that these tales are true - the most striking of which involved a 9-year-old boy who used to go into violent rages, had chronic pain due to spinal tumors, and suffered from pica (he would eat his own clothing and bedding - he would consume a shirt a day).  Almost immediately after starting the cannabis, the pica stopped, the child started doing better in school, and he went from having over 300 violent episodes per day to going days at a time without a single aggressive incident.

And yet.

We're talking about giving a 9-year-old child marijuana.  It's been drummed into our heads since elementary school that using marijuana while your brain is still developing will mess you up - decreased short-term memory, gateway to all the evils of the world, dependency, aggression, depression...  I don't know if there's a minimum age for a child to receive a medical marijuana prescription, but I'm disturbed by the image of my preschooler listening to Bob Marley and staring at van Gogh paintings in Amsterdam.

But the more I read, the more I am convinced that for kids who require medication, marijuana might be one of the safer options out there.  Yeah, there's the whole legality issue, but I think marijuana has been excessively demonized, and if it can ease chronic pain, it shouldn't be kept from ill people who could reap its benefits.  I am thankful that my son is benefiting from non-chemical interventions and does not require drugs, but I'm glad to know there's something out there that's helping families cope with behaviors that can not be changed in similar ways.

(Read some of those links up there - good stories abound.)

Thursday, November 26, 2009

The Comfort Pile

Most kids form an attachment to a comfort object - a favorite blanket, teddy bear, other plush friend - and drag it around throughout early childhood.  Ryan has a variety of lovies, each of which is important in its own special way.  All of them must be present at bedtime.  They are: Bear, White Bear, Brown Bear, Orange Bear, Blue Blanket, and White Blanket.

(This picture is from March 2007)

The main fabric friend is Bear - also known as Blue Bear and Two Bears (because it has a picture of a bear embroidered on it), Bear is a teddy bear head and arms attached to a little blue blankie.  Bear is Ryan's trusty companion when we're out in the world, even if he is spending more and more time tucked away in my bag.

White Bear wears a hat; that seems to be the extend of what makes him special.  He doesn't get played with much, and never gets hugged in bed, but he must be present at bedtime.

Orange Bear (which is really tan) is occasionally fun to play with and to hug while sleeping.

Brown Bear used to be Stu's childhood bear; Ryan doesn't treat him any differently than Orange Bear, but we know he's extra special.

Blue Blanket is a large fleece blanket I made out of a remnant.  It's big enough that he uses it as his sleeping-under-it blanket, but not long enough that it makes it to the end of his bed.  Blue Blanket makes for a fine tent, and we can all hide under it together when the world gets a little overwhelming.

And then there's White Blanket.  White Blanket is small - the size you would expect a child's favorite blanket to be - velvety on one side and satiny on the other.   Ryan has assigned White Blanket magical healing powers.  Whenever he is hurt - physically, and sometimes emotionally - he will request White Blanket, and will rub the satin side of the blanket on whatever part of him he perceives has been injured.  White Blanket has been following Ryan around the house lately, Linus-style.  It also makes a nice, if slippery, superhero cape.

Monday, November 23, 2009

A weekend of meltdowns

We've had a very meltdown-prone couple of days, probably due to a stomach bug.  Whatever the organic cause, the tantrums are fascinating, infuriating, and confusing.

The most common example of a tantrum from this weekend was the "Can I pee in the potty?" freakout.  It goes like this: I ask Ryan if he has to go to the bathroom; he does not know how to properly answer a yes/no question, so even though the answer should be no, he runs crying to the bathroom; then he refuses to leave the bathroom until he has peed, even though he didn't have to go in the first place.  I think what's going on here is that when I ask "Do you have to?" he hears "You have to."  Then he has a fit because I'm making him do something he doesn't want to do.  And then he's frustrated because he's unable to do the thing he thinks I've ordered him to do. The obvious solution would be to stop asking him if he has to pee, but he rarely thinks to communicate his own needs, and I like to err on the side of keeping the floor dry.

We're working on yes/no questions at the same time we're working on either/or.  If I ask Ryan "What do you want to eat?" he might respond with an item on his short list of favorites: fruit bar, cheese, banana.  If I want to encourage him to pick something else, I might ask, "Do you want Kix?"  He will always respond "Want Kix."  But that doesn't necessarily mean he wants Kix; I have to wait a few seconds to see if he starts whimpering to know if he actually means he does NOT want Kix.  I might say, "Do you want Kix or animal cookies?"  He will inevitable respond, "Want Kix AND animal cookies!"  But again, this doesn't mean he actually wants both, or either, of these snacks.  If I approach this visually, say by holding up a box of Kix and a box of animal cookies and asking which he wants, he will usually still demand both, or will point at one and then ask for the other.  And then he'll still request a fruit bar.

Another common trigger for tantrums the last few days has been changes in routine.  On Saturday, Stu's parents came over to visit, but they were coming from different places and therefore arrived at different times.  When Grandma walked in the door, Ryan asked, "Where's Grandpa?"  We explained that he was on his way.  Ryan was ok with this at first, but when 5 or 10 minutes passed and Grandpa still wasn't there, he realized that the order of the universe had been upset - Grandma and Grandpa must be in the same place at the same time - and he launched into a meltdown.  There was a brief respite when Grandpa arrived, but the world had already been shattered, and Ryan wasn't about to let us forget that.  After 4 hours, he mellowed out enough to play with his grandparents for a few minutes before they had to drive home.

On Sunday we celebrated Thanksgiving at my parents' house (holidays tend to be somewhat arbitrary in my family).  Things were going pretty smoothly (aside from bathroom tantrums) until guests started arriving for dinner.  The break in routine was jarring, and spun Ryan into another meltdown - this time he initiated our exile to the bathroom.  We left early.

Then when we got home, he started throwing up.  So I guess much of the tantruming was a result of his not knowing how to tell us that his stomach hurt, which is odd, because he certainly knows how to tell us when he hurts his leg or his head.  The closest he came to expressing his discomfort was saying, "Can I have squeeze it please?"  Somehow  I figured out that this meant "Rub my tummy."

One of these days, he's going to be able to let me know what he needs without having to cry.  Soon, please.

Friday, November 20, 2009

Patterns

One of the hallmarks of autism is rigid thinking - getting into patterns that are very hard to break.  Seemingly anything can become habitual, at any time.  Around here the patterns often stem from pairings - things that Ryan has decided go together that can never be apart or paired with anything else.  Perhaps he has a future as a sommelier.  Other times, the patterns are predetermined reactions - the absolute opposite of spontaneity.  It's like full-body scripting.

Here are some of the newer patterns in this house:

- For maybe the last week, every time Ryan takes his first sip of a cup of milk, he shouts, exactly the same way every time, "It's a milk mustache!  Get me a towel!"  It doesn't matter if you offer him a straw - the first sip always results in this routine.  As a result, he's drinking a lot less milk these days

- Similarly, whenever he eats chocolate, he declares, in exactly the same way every time, "I'm dirty!  Get me a towel!"   Chocolate consumption is not affected.

- Bananas are one of his top three favorite foods; "nana" was his first word for "food."  Strangely, he still has trouble pronouncing this word - he says "bwana."  Anyway, whenever he notices there's a banana lying around, before asking for it, he will declare, "Maybe bwana will help," as if he's been mulling some deeply troubling global potassium shortage.

- In the bathtub, he insists on singing "Curve of the World" from "It's a Big Big World."  He has not seen this show in about a year, it has nothing to do with water, and he doesn't sing it in any other context.

- He's started making this weird throaty vocal sound to punctuate... something, perhaps the end of an unspoken thought.  It sounds like "nta."  It's totally annoying to me; Stu says he barely notices it.  Oh, how I wish for his level of man-focus.

- When eating dry Kix, if he drops a piece (a Kick?) he will pick it up, but instead of just eating it, he will place it back in his bowl, then pick up that exact same piece again and eat it.

These habits last a long time, we push back against them and try to mix things up, then suddenly they dissolve and are replaced with new patterns.  Rinse, repeat.

Wednesday, November 18, 2009

FlashForward

A few weeks ago I wandered into the living room while Stu was watching Flash Forward, and I was compelled to sit down and watch the rest of the episode (and then later search Hulu so I could catch up on the series).  For those who haven't seen this show yet, the premise is that there was a worldwide event in which everyone in the world simultaneously blacked out and saw what they would be doing during a specific 2-minutes-and-17-seconds period six months in the future.  They aren't sure if the future is set in stone..  Individuals who don't have visions during the blackout believe that they have less than 6 months left to live.

Anyway, this particular episode I walked in on, they introduce this autistic boy, maybe 10 years old.  I was stunned by how well the character was portrayed.  The young actor had been directed to be more like Ryan than like Rain Man - echolalia, lack of eye contact, and social awkwardness, but no rocking and flapping kinds of crap.  It was perfectly clear to me that the character was autistic; Stu said he hadn't realized it until the character's father announced it in a previous episode.  I was totally transfixed by the portrayal of this minor character, Dylan.  Dylan is in a hospital following an accident that killed his mother.  His father, Lloyd, has not been in his life much, but is now at his bedside, telling the child that his mother is dead.

Near the end of the episode, there was a moment that made me cry with joy.  Dylan put his hands on Lloyd's cheeks, looked him directly in the eyes, and said... something, I wish I could remember what, but it doesn't even matter.  Just the eye contact made Stu and me gasp. I was filled with this overwhelming sense of hope for this child, this fictional child I barely knew anything about on a show I had never seen before, because I understood that moment.  I recognized the progress that was represented in that tiny moment, the struggling that could make that beautiful moment possible.

I'm looking forward to seeing where this series goes, and how this character develops.

Saturday, November 14, 2009

A Long Rambling on Vaccines and the Quest for Control

There is a very vocal camp of parents who are convinced vaccines caused their children's autism, despite numerous scientific studies that show no connection between vaccines and autism (and NO scientific studies that DO find a connection).  There's a terrific article in the current issue of Wired magazine on this subject in defense of science and reason.  The author notes that the human brain seeks out correlations and tends to confuse correlation with causation, and that the pseudo-science that comprises the vaccines-caused-my-kid's-autism arguments preys on well-meaning parents who are desperate to find a reason for their children's struggles and a manageable way to solve their problems.  (Autistic behavior happens to become evident around the same age as kids get vaccinated, so parents conclude one caused the other.)

So more parents are choosing not to have their children vaccinated, but autism diagnosis rates continue to climb.  And the largest U.S. outbreak of mumps in three years is occurring in New York and New Jersey right now.  Is this because fewer children are receiving the MMR vaccine?  It certainly correlates; I wouldn't be surprised if there were a causal relationship as well.  As the Wired article points out, opting not to vaccinate your child is not removing a risk; it's taking a different risk.  I, for one, am not willing to put my son at risk of contracting polio, diphtheria, rubella etc, or developing meningitis or going blind as a result of such illnesses.  (An aside: I knew a guy who had had meningitis as a kid.  It messed him up.  At age 21 he still had all his baby teeth.)

For a nice roundup of some facts about vaccines, please see the sidebar piece to the Wired article.

As a parent, it's hard to accept that your child will face obstacles that are out of your control.  It would be comforting to believe if you could make all the right choices throughout his childhood, he'd come out with a perfect life.  You can't control genetics, and you can't control how other people will behave toward your child throughout his lifetime.  But you can control what you put into your body, and therein lies the root of the anti-vaccination movement.  And eating disorders.

When I was 17, I started experiencing symptoms of depression.  I felt completely at its mercy, and I didn't know what to do about it, so unconsciously, I started grasping for control of my world, and I guess I felt like the only thing I could control was what I put into my body.  So I stopped eating.  Ironically, this exercise in self-control spun my life totally out of control - all I could think about was not-eating.  My parents forced me into therapy.

When I graduated from high school, I weighed 97 pounds.  My doctor and parents threatened that if I didn't gain some weight soon, I wouldn't be allowed to start college in the fall, and I'd have to go to an in-patient hospital program instead.  So I started a new exercise in control - making the choice to become healthier in time to leave for freshman orientation.  Logical arguments had not convinced me that I had made seriously unhealthy choices, but creating an alternate narrative of self-empowerment and self-control did manage to give me a viable new direction.

Now, almost two decades and 30 pounds later, I feel more in control of my life than I ever have before.  I could not control my son's being born with PDD, but I can control how I deal with it.  I choose not to be swindled by snake oil salesmen.  I choose to reject chelation and hyperbaric chambers and B12 shots in favor of behavior modification and (increasing) personal acceptance of my son's neurological differences.  I choose to believe in scientific studies instead of the quackery popularized by a Playboy bunny.  I choose to be an advocate for my child and not make death threats against someone because he invented a vaccine for rotavirus.

Thursday, November 12, 2009

Are You Me My Mudder?

When I was little my grandmother kept a couple of kid books and a mermaid doll in her coat closet for me.  The only one of the books I remember specifically was Are You My Mother?  This classic story features a baby bird who hatches while his mother is off finding food for him and goes off in search of her.  He has an innate sense that he has a mother, but doesn't know what she looks like, so he starts asking random creatures - a kitten, a hen, a dog, a cow, and a digger truck - if they are his mother.  The truck returns the bird to his nest moments before the mother bird returns with a worm.  I remember being disturbed by the Snort -  even though it eventually did the baby bird a favor by putting him back in his nest, it looked totally menacing, and I couldn't accept that the bird would ask this scary truck if it was his mother.

Ryan loves this book; it spawned his earliest instance of scripting: "Down, down, down, plop!" was his go-to phrase for "down" from the beginning.  Our copy is a tiny board book, which seems far less menacing than the full-sized worn-out paper edition in Grandma's closet.  To try to ease the anxiety that used to arise whenever I left the room, I always tacked on a final social-story line when I read him this book: "And Mommy always comes back."

Tonight at bedtime, Ryan read Are You My Mother? aloud for us.  It was magical.  It was full of paraphrasing instead of rote recital.  It went something like this:
Are You Me My Mudder?

A mudder bird sat on her egg.  The egg jumped and jumped and jumped until out came a baby bird. 

"Where's my mudder?  I will go and find her."  Down down down down PLOP!

He asked a kitten.  "No, I'm a kitten!"

He asked a chicken.  "No, I'm a chicken!"
Then he got stuck.  The formula here is supposed to be, "'Are you my mother?' the baby bird asked a dog.  'I am not your mother, I am a dog,' said the dog."  I pointed at the dog and prompted, "What did the dog say?" 

"Woof!"  he answered.

Then he saw a big thing.  "You are my mudder!"  The big thing said, "Snort!"  "Oooh, you a scaaaary Snort."  The Snort lifted the bird up up up and in da nest.  The baby bird was home.

Then the mudder bird came back.  "You [are not] a kitten, a chicken, a dog, a cow, a Snort.  You're my mudder.  And Mommy always comes back."

Yes, baby, Mommy always comes back.

Tuesday, November 10, 2009

Quilting

I feel like things with The Captain are stable at the moment.  Yeah, I'm sure I just jinxed it, but the past week has been notably un-noteworthy.  Sure, there have been tantrums I didn't understand (something about "big potty little potty"), and there have been adorable misuses of the English language (like alerting me to a bath toy jammed on his wrist by saying "Can I have stuck please?"), but overall, I feel reasonably content and in control.

So I've turned my focus to quilting.  I enjoy piecing and playing with fabric.  It both relaxes and challenges me, and occasionally people pay me to do it.  Last year I started a blog to showcase my work, but things got busy, so I hadn't updated it since New Year's Day.  Until today!  Presenting a round-up of some things I've worked on over the last year:  Naptime Memory Quilts.

Monday, November 2, 2009

Shorties: Can I...

Ryan's been getting really good at asking for things.  He understands the formula: Can I have ___ please?  He does not yet understand that not all questions follow this formula.

Yesterday he was crying.  When he was finished, he tried to formulate a sentence to express that he needed me to use a tissue to dry his tears.  The result: "Can I... wipe off the cry, please?"

Later, his thumb was itchy, and he hasn't figured out that he can scratch his own itches.  Again, he made the effort to use words to get what he wanted: "Can... I... itchy the thumb, please?"  I modeled the right words for him: "Scratch my thumb, Mommy!"  So he tried again: "Can I... have... scratch the thumb... please?"

I love this generalization stage.  It's clear that he understands that we expect him to use language, and that stringing words together can get him what he wants, but he hasn't learned the natural patterns of language yet.

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?

Sunday, September 27, 2009

Happy Birthday, Baby

In just a few hours, my baby will be four years old.  I don't know how he got so big - it's not as if he eats anything.  I'm very proud of him, and of all the progress he has made this year.

Ryan's diagnosis came just after his third birthday; we started the evaluation process the month before he turned three.  We had two parties for his third birthday - a small family gathering at our apartment and a raucous kiddie party at the ball pit.  Neither party was without incident.  He did ok at the kid party; he had some trouble transitioning from play time to lunch time, and he dragged me through all those damn tunnels, and he had a small fit about the presence of those chocolate cookie crunchy things in the ice cream cake, but overall he had a decent time.  The family party was the bigger disaster: Ryan was overwhelmed by having his four grandparents and aunt and uncle in the house at the same time, so he spent the afternoon hiding in his room, shrieking. At the time, I knew nothing about PDD or sensory integration disorder.  I thought Ryan was just being difficult.  Not knowing any better way to deal with my child's peculiarities, I pushed him to act like I thought a kid should act at his birthday party: playing with Grandma, chasing his friends around, smearing icing all over his face.  Then I got mad that my efforts only made things worse.

This year, Ryan's birthday party was fantastic.  Again, we held the kiddie party at the ball pit - it's his favorite place in the world, so I never even considered having it elsewhere.  Ryan ran through all the tunnels and ladders and slides independently, once or twice even interacting with his friends.  (OK, I went into the dodgeball pit once, because he looked at me angelically and said "Come on in, Mommy!"  I couldn't resist him.)  His transitions were perfect, he kept his pants dry, he showered Grandma and Grandpa with hugs and kisses.  My friends all commented on how well he did.  And he and the other kids had a terrific time.



This year, Ryan's birthday coincides with Yom Kippur, so it seems appropriate for me to atone for the sinful way I have tried to push him to be someone he is not.  A year ago, I would get frustrated with him for being (in my eyes) withdrawn, stubborn, odd.  I would feel embarrassed by his behavior at the playground.  Over the last year, I have come much closer to truly accepting Ryan the way he is.  I still try to give him tools to help him live in my world, but I also work on developing the skills I need to interact with him in his world: compassion, empathy, patience.  I'm learning to see the world as he sees it.  I'm learning not to dismiss things that make little sense to me but are obviously important to him.  I have much further to go, but I'm trying my best, and I hope God will give me another year to work on this.

The difference from last year's party to this year's was night and day.  I'd like to think the therapy has played a major role.  I'd also like to think my change in perspective has affected things.  My expectations have shifted, and I'm learning how to prepare my son for our adventures.  This has been the hardest year of my life, but I could not be more proud of Ryan.  Happy birthday, Baby!

Wednesday, September 23, 2009

Oh boy, sleep! That's where I'm a viking!

Ryan is adjusting well to his new school, and I am unemployed.  I had a freelance gig during his first week of school, but nothing this week, and nothing on the horizon.

I could be more active about hustling to find another job, but I've been so busy with errands and whatnot that I just haven't gotten around to that.  Stu says I should take the opportunity to relax a little, but I haven't made time for that yet.  Maybe next week.

Really, I should carve out some time for unapologetic napping, even though I feel like I should be engaged in more productive endeavors.  Ryan has stopped sleeping, and therefore Stu and I have cut back as well.  He used to be such a sound sleeper - he would pass out at 7 or 8pm and we wouldn't hear from him til like 5:30am - but lately he starts crying or screaming every half hour or so, starting around midnight and going past 3am.  (He may make noise past then, but I think my brain turns off my ears after a while.)  If I wanted to be getting up every half hour, I  would have had another kid.

I don't know why he isn't sleeping.  He's tired, and he knows he's tired.  Miss Maria said he told her he was tired several times at school (omigod, he identified a feeling and expressed it to someone other than me!  Yay!)  The first thing he said when he got off the bus this afternoon was "Tired."  I assured him he could take a nap.  "Sleep!" he begged.  I sat him on his bed, took off his shoes, tucked him in, and as soon as his head touched the pillow, he declared "Car."  I asked if he meant he wanted to sleep in the car.  "Sleep in the car," he echoed.  I'd like to think that when he echoes me he's agreeing, but I'm not always sure.

I strapped him into his booster seat and pulled out of the garage.  "Playground!" he requested.  Ah.  Since I had been under the assumption he was going to go to sleep in the car, I hadn't packed a Mommy Bag.  I stopped to pick up a bottle of water and drove the very long route to a park.  He looked perfectly awake when we arrived.  He galloped up the hill and into the playground.

It soon became obvious he was way too tired for this adventure.  I dragged him back to the car, despite his protests that he wanted to climb more.  I headed for the parkway and drove for a long time, ignoring his requests to watch tv or drink juice.

Twenty five minutes later, he was asleep.

Ten minutes later, I pulled into my garage and transfered him to the umbrella stroller, whereupon he promptly woke up, demanded tv and juice, and refused to go back to sleep.  He remained cranky and overly emotional until bedtime.

Maybe tomorrow I'll use some of my unemployed hours to catch up on some lost hours of sleep.  Lord knows how long this phase will last.