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.