Sunday, January 31, 2010

Is this exploitation?

A blogger I love posted a video of her autistic daughter asking to buy a toy, because she was proud of how her daughter's language and communication skills and connection to the world had blossomed, and she wanted to share the cuteness.  Most of the comments under this post were very positive - yay kid!  Yay progress!  How many toys did you get suckered into buying?

But then there were a couple of lengthy comments from "Molly," a woman who identified herself as "a person who has grown up with health and disability issues" who took offense at the whole concept of disability mommy blogs - or as she called them, "About Child, but FOR Mommy bloggers."  Her argument was that she would be "mortified" to discover that all her childhood struggles had been shared with the world, and that making the choice to put a child's image and personal information on the internet is unfair to him.  She writes,

I can't imagine how violated I would feel today if I knew my mom had posted information about my difficulties with math or socializing or my medical appointments or embarrassing ballet recitals. Anyone who would do such a thing to a child is SELFISH. How dare you make your child's issues public. You mothers out there who post such vile things are primarily interested in your own experiences with your child.
My initial impulse was defensive - to dismiss Molly as bitter and reactionary and excessive.  But upon reflection, there's certainly some merit to her argument.

It has certainly not been my intention to humiliate my child, in the present or future.  I have made minimal effort to disguise who we are - I don't post our last name or where we live, but do use real first names and photos.  My goals with this blog have been predominantly selfish 1) to encourage myself to write more frequently; 2) to deal with my feelings about raising an autistic child; and 3) to put a positive, human face on PDD so that my son may grow up in a more understanding, more compassionate environment.  I've been pretty open about the fact that the blog is as much about my own personal growth as it is about my son or his accomplishments.

But yeah, someday he will be able to read, and he may read this blog and be mortified, or his peers might somehow find out about this blog and read it and tease him because of it.  And I should not be quick to dismiss the potential impact of that.  The internet creates a permanent record of everything ever uploaded, so even if I were to erase this blog today, traces of it would probably remain out there for digital eternity.  I could speak with everyone I meet about my son's struggles and achievements and leave no permanent record of those conversations, but when he is a teenager, or an adult, my writing about his childhood will still be available to him and to anyone he meets.

I believe he should feel no shame for being himself, but am I denying him the ability to make choices in the future about what he reveals or does not reveal about himself?  When he's 12, will he be whining that I've embarrassed him and ruined his life?  (Well, yeah, he will.  There's no getting around that, blog or no blog.)

So I ask you: is this blog exploitative?  Should I anonymize him/us?  Is there more benefit than harm in sharing the details of one family's life on the spectrum?  At what point will he be too old for me to be talking about him like this?

Thursday, January 28, 2010

Shorties: Back

Lately, all of Ryan's questions and demands end with "back."  "Can I have milk back please?" does not mean he had milk earlier in the day and wants it again; when stated first thing in the morning, it just means he wants milk. "Can I have blanket back please?" in no way implies I took his blanket away from him; he just wants to find his blanket.

I like to think of this as a window on his mind.  Perhaps he has a more fluid understanding of time than I do.  Milk is, milk was, milk will be, all at once.

Or maybe he's just learning the language.

Wednesday, January 27, 2010

Update on Kindergarten

As you may recall, I've been freaking out about the prospect of having to enroll Ryan in kindergarten this coming fall.  I am pleased to report on a lovely conversation I just had with two helpful ladies at the Westchester Institute for Human Development.  It is one of New York State's 13 Special Education Parent Centers, providing parents of children with disabilities information on navigating The System.

Here's what I learned:

In New York, kindergarten is not mandatory, but once you enroll your child in kindergarten, the school clock starts, and it is not the parent's prerogative to hold the child back for another year of kindergarten.  Once a child is eligible for CSE* all special ed services take place in kindergarten, BUT a parent can choose to enroll her child in a private preschool program and bring him to the school where the kindergarten is for therapy services.  So, I could send him to a private preschool (that would accept a 5-year-old) in the mornings, then bring him to our local elementary school for his speech and occupational therapy.  To continue using the same therapists he uses now, I would have to ask if the school district still contracts with XYZ on the CSE level.

Holding a child back from kindergarten is known as "red shirting."  I do not want my child to be blown up on an alien planet, but such is the life of a special education family.

There are major differences in philosophy between CPSE** and CSE.  CPSE is developmentally focused, and CSE is educationally focused.  Example: let's say a child has beautiful handwriting but has poor coordination.  He could qualify for OT under CPSE, but probably would not qualify under CSE, because OT would not directly improve his academic performance.  So CSE usually provides a child fewer services than he got with CPSE.

Another difference: SEIT*** is a CPSE-only phenomenon.  A kinderg√§rtner [spell check wants this word to have umlauts!  I'm psyched!] might qualify for an individual classroom aide, but would not have a SEIT.  Our Chrissy days are numbered...

The ladies at the Parents Center / Early Childhood Direction Center stressed that a parent must be her child's fiercest advocate, and be an equal voice on the committee.  I am now armed with the name and number of my district's CSE chair, and a little information to help me make more informed decisions.  Watch out, Bureaucracy, here comes Mama.



* Committee on Special Education - in our school district, this happens the school year in which a child will be 5 as of 12/31.


** Committee on Preschool Special Education - for ages 3-5.


*** Special Education Itinerant Teacher.  AKA Chrissy.

Tuesday, January 26, 2010

We're baaack

Ryan, like most four-year-olds, is a creature of habit and routine.  But his routines tend to be location-specific.  Certain activities are associated with specific places; he can not perform the activity elsewhere, and he can not do other things in that spot.  For example, if he's sitting on his potty in our hall bathroom, he insists I must open the vanity cabinet, and he must pretend that two bottles of shampoo are a violin and bow, while scripting a certain animated sequence from Elmo's World.  He does not do the-violin-and-her-bow anywhere else, and that is the only game he will initiate there.

When you remove him from his usual environment, many of his daily routines go out the window.  We just spent a long weekend visiting my snowbird in-laws in Florida, and Ryan adapted beautifully, surprising us at every turn.  He's been avoiding drinking milk here at home, but he chugged almost a pint of milk on the plane on the way down (well, however much of it he didn't pour on himself), and glass after glass over the weekend.  At home he will nap maybe one hour a month; this weekend he took a two-hour nap two days in a row.  He never once begged to play computer games.  He didn't lean his head on the back of the toilet while peeing (yeah, I know...).  He stayed at the table in restaurants.  And on the trip home, instead of passing out by 8pm like he usually does, he stayed wide freaking awake until we stumbled through the door at 12:30am.

It's not like a change of environment changes everything - he was still reluctant to play with two wild five-year-olds at the playground, he still spit food all over the place, he still had his share of tantrums - but it definitely gets him out of certain patterns for a little while.

And don't worry, coming home put everything back to normal.  He bounced into our bedroom promptly at 6:15am and demanded to "play a game of Dora pwease."

Which leads me to a tangentially-related tip from the home front:  When stuck in a parenting rut, change the reward structure.  While Ryan has gotten very good at keeping his pants dry all day (and sometimes all night), he whole poop thing has remained elusive.  So I took away his favorite thing in the whole world - playing PBS Kids and Nick Jr computer games - and limited them to being a reward for pooping in the potty.  There has been much crying because of this change, but his pants have stayed clean as a result.

So now, during the times he wishes he was playing his beloved games, he just scripts them instead.  We'll be playing outside, and he'll recite, "Click on the green button to start."  Or he'll riff on it: "Click on Mommy..."

Friday, January 22, 2010

Grateful

I was catching up on some of my favorite autism-mommy blogs, and started clicking through links to their favorite special needs blogs, and drifted into a world of schadenfreude.  Reading about other families' problems made me feel like a whiny little bitch!

I'm so grateful that my son is as physically healthy as he is.  He doesn't suffer from constant seizures.  He doesn't have a chromosomal deletion or duplication.  He can eat real food, without need of a feeding tube.  His legs and spine and skull are all intact and functional.  He has two original kidneys and is not on a waiting list for replacements.  He doesn't bang his head into walls on purpose.

I am grateful that my complaints are so small and manageable.

Oh, the phone just rang.  Ryan's teacher thinks he has pink eye.  And we're getting on a plane first thing in the morning.  No problem.

Thursday, January 21, 2010

It wasn't the squirrel

What's the opposite of sensory overload?  That's what's been going on here the last week or so.

Ryan has been a cranky little bastard, because (I think) he's seeking some sort of sensory input he needs but isn't getting.  Maybe he needs to run around outside more, and the cold weather is taking its toll.  I'm not sure what exactly he needs, but there are only so many hours each day my back can handle turning him upside down, spinning him, wrestling with him, mauling him.

So this afternoon I stuffed Ryan into his winter coat and chased him outside.  He rode his tricycle!  He ran and laughed and seemed really happy!  He chased squirrels!

And then he chased a squirrel across the street.

Alone.

I went freaking ballistic.  I screamed; he ignored me.  I grabbed his shoulders; he smiled.  I yelled at him until it was clear he had gotten the message and he cried; it took quite a lot of yelling for that to happen.  It was like he was enjoying the sensory input of my yelling at him so much that he didn't notice the anger behind it.  And he was so excited about running that he didn't realize he was in the street.

At this point, my mother would point out that the root of the problem was the presence of a squirrel.  I come from a long line of squirrel-haters.  My grandmother used to catch squirrels in "humane traps" and then submerge the traps in a barrel of water and drown the trapped critters.  My mother once asked my father to airbrush a few little silhouettes of squirrels on the fender of her car: one for each squirrel she had run over; strangely, my dad declined.

I do not blame the squirrel in this case - it showed no signs of wanting to be chased.

So I will keep wrestling with Ryan and encouraging him to do somersaults and headstands so perhaps he will get whatever input he's been seeking in a safe way - one that doesn't involve playing in traffic.

Tuesday, January 19, 2010

On Ice

Today was Ryan's much-anticipated first ice skating lesson.  As you may recall, we went ice skating with him several times last month, and he freaking loved it.  So it seemed like the logical next step to enroll him in the Tot Class - ages 4-6.


At the beginning of the class, he seemed happy to be standing behind his big orange road cone.  The instructors told the kids to push their cones across the rink.  Nine kids started shuffling; one stood still.

Various instructors took turns devoting their attention to Ryan, encouraging him to move his feet, trying to get him to pay attention to the task at hand.

He got totally lapped.

While he appeared to be having a fine time doing his own thing, it was heartbreaking for me to watch his total inability to follow directions like the other kids.  True, most of the children in the class were older, and he was doing almost as well as the other four-year-old boy at actually moving on the ice, but I hadn't considered that Ryan might need that much more individual attention than everyone else. I sobbed with the realization that even with all the progress he's made over the last year, my baby is still nowhere near ready to mainstream.

When I showed Stu the videos I had taken of the lesson, he was not at all distressed.  "He's doing his own thing.  He's having a good time.  There's nothing sad about this."  And I know he's right.  I know Ryan is going to have a terrific time for the next 13 Tuesdays, and he might even learn to skate.

I'm just going to have to keep reminding myself not to pay so much attention to whomever is behind all those other road cones.

Sunday, January 10, 2010

Whatever the hell that was

Ryan's been fighting a cold, and therefore hasn't been his usual cheerful self the last couple of days.  He's been a little more tantrum-prone, a bit more obsessed with computer games, a little more raw.  Sure, he was terrific at a birthday party yesterday (I swear, when he knocked that one boy over, it was an accident - Ryan was just dancing really really exuberantly), but he saved all the crazy stuff for us.  We're lucky like that.

Bedtime is usually sometime between 7 and 8pm - lights always out by 8.  Last night, he was clearly exhausted well before 7pm, but we were foolish and didn't start the bedtime ritual until he was falling over himself and cranky.  The weighted blanket didn't even help the first two times we tried to use it. (An aside: he totally understands the power of the blanket, and will now lie on the floor at the sight of it, as if awaiting its restorative magic.)

I asked him to take off his clothes; he did.  "Naked Boy!" he shouted in delight.  He put his clothes in the laundry basket.  I helped him put on his pajamas.  Then his mood changed without warning.

"Pants put back on!  Pants put back on!  On da shirt!" he shrieked.

He grabbed his day clothes from the laundry basket and threw them on the floor with great purpose.

"You want to sleep in your clothes?  Um, ok."  I helped him change back into his jeans.

"Aaaaaaagh!  Green pants put back on!" he wailed.  I got him back into his pajamas, and let him put the long-sleeve shirt he had worn during the day over them.  Tears and snot kept flowing.  I couldn't get him to calm down, so I tried desperately to interpret what the hell he wanted.

Then, while crying and screaming like he was on fire, he proceeded to fling every item in the laundry basket, one by one, over his shoulders and across the room.  Shirts and underwear and socks were flying out into the hallway.  Stu and I just stood there (out of the line of fire), staring at this ridiculous scene, covering our faces so he wouldn't see us laughing.  When the basket was finally empty, I was able to wrestle him into submission.  I held him in his bed, Stu covered him with the weighted blanket.  I read stories until he fell asleep.  Peace.

When he was finally quiet, I let my laughing tears turn to real tears.  I sobbed for my baby, so overwhelmed by our world, unable to tell me what he needs.  Why does it need to be so hard for him?  I'm not even sure what I mean by "it" - communicating?  Self-regulating?  Remembering the order of operations for each of the little activities that make up a day?  He works so hard trying to follow social rules that mean little to him.  He has put in so much effort over the last year to be able to speak and listen and socialize as well as he does - hours of therapy to train him to learn things the average child absorbs effortlessly.  I'd like to think I understand this kid better than anyone else, and I still don't know what he was trying to express or what he wanted.  My heart breaks for him.  I want to scoop him up and tell him I understand him, but sometimes all I can do is love him.

I cry and hope that is enough.

Friday, January 8, 2010

He's not Lance Armstrong yet, but...

This morning, Ryan rode his tricycle for the first time.

Over the past two years, I've tried to teach him to ride a tricycle.  I'd push his knees several times, then let go and encourage him to do the pedaling himself.  I would stand a few feet in front of him and tell him to ride to Mommy.  He would sit on his tricycle at one end of the long hallway between the buildings in my complex, ordering me to go "far," as if he wanted to ride to me, but he'd just sit there.  He would pedal his right foot forward once, then backward half a turn, then forward with his right foot again.  Santa brought a video game that's controlled by pedaling a stationary bike, presumably to encourage him to want to learn; Stu and I had to contort ourselves to prevent him from pedaling backwards while also helping him learn to steer.

This morning, immediately after Stu had left for work, Ryan asked me to open the front door.  I assumed he wanted to follow Daddy to the elevator, so I opened it.  Then he told me to unlock the outside hall closet.  And he tried to pull out his tricycle, which I had put away to make room for the Christmas tree, but hadn't bothered taking back out.  As soon as I brought it into the apartment, he sat right down and started pedaling.

Very.

Slowly.

Right foot.  Left foot.  Right foot.  Smile.  Left foot.  Giggle.  All the way from one side of the dining room to the other (maybe 10 feet).  I turned him around, and he rode across the room again.  He tried to ride across the living room, but the rug made it too difficult to negotiate, so I turned him around and he pedaled.  Through.  The.  Dining.  Room.  Again.  His face beamed with pride.  He kept looking over his shoulder at me, grinning a "Did you see that?!?" grin.

I grabbed the camera, of course, to film this tremendous milestone, but it seems there was some sort of technical difficulty (or Meredith-is-a-dork difficulty), and the camera didn't actually record the freaking movies.  But I swear it happened.  And I bet it's going to happen again.

I bet this spring he'll finally be able to ride around the patio with the other kids.

Saturday, January 2, 2010

Oxygen Deprivation

In a 2005 study, rat pups were deprived of oxygen for as long as ten to twelve minutes during birth (by increasing the level of nitrogen in the air).  As they grew older, the oxygen-deprived rats showed autistic-type symptoms, including delayed or disrupted reactions to sound.  The study suggests that there may be a correlation between oxygen deprivation at birth and autism later in childhood.

I became aware of this study after reading through a fascinating thread on an ASD message board on Circle of Moms.  Dozens of women were discussing the difficult births of their autistic children - umbilical cord strangulation, unusually quick deliveries, emergency c-sections - that all included oxygen deprivation.  Obviously this is not a scientific sample, and I'm sure you could find lots of autistic kids who were not deprived of oxygen (and suffocating newborns who never developed any special needs).  But I'm really into the idea that there may be some sort of connection between poor air supply and early brain development.

Are we seeing more diagnoses of ASD these days because doctors are better able to keep struggling newborns alive than they were 20 years ago?  Could it have something to do with the modern medical practice of clamping off the umbilical cord too soon after birth?  Apparently, although blood continues to pulse through the cord for about 5 minutes after birth, doctors often clamp it off after 30 seconds to a minute, thereby cutting off the newborn's oxygen supply before his/her lungs are 100% functional.  This can lead to birth injuries such as cerebral pasly, retardation, learning disabilities, and autism.

So, in the interest of totally non-scientific inquiry, I pose this question to you, Dear Reader:  was your child somehow deprived of oxygen at birth, and do you consider your child neurotypical or somehow challenged?  I'll start: Ryan wasn't breathing at birth, and has PDD.

Discuss.

------------------
An addendum: I wrote a note to the researchers on the Interactive Autism Network project, and Dr. Connie Anderson wrote the following in response:

"So far, various researchers have found some slight associations between autism and various pregnancy and birth related factors. In a recent article on the epidemiology of autism, Newschaffer et al wrote, 'Uterine bleeding, Cesarean section, low birthweight, preterm delivery, and low Apgar scores are among the few factors that have been more consistently associated with autism... Methodologic issues continue to challenge the synthesis and interpretation of this body of evidence. The underlying cause of a measured obstetric factor or set of factors is rarely known, nor is the temporal relationship between the obstetric event and the actual biological onset of autism.' (The Epidemiology of Autism Spectrum Disorders, Annual Review of Public Health 2007, Vol 28, pg 244)

"In brief, there have so far been some associations found, but little is still little understanding of whether they are cause or effect or how they even relate to autism's onset."