Thursday, December 5, 2013

Time to Reinvent

Now that the headaches and nausea have subsided, I'm sitting here quietly trying to reinvent myself.

I've basically been a member of a gang (or perhaps a cult) for 3+ years. Almost everyone I know in Connecticut I know through playing derby. I've based my schedule around countless practices and games and fundraisers and promotional events. I have used roller derby as my incentive to work out - I find running intensely boring, but knowing it might improve my endurance and footwork, I'd drag myself out for a jog.

So who am I going to be next?

Tuesday, December 3, 2013

Loverboy

Remember Ryan's "girlfriend" Hediyeh?

Yeah, he's totally into her.

Monday afternoon, Ryan stepped off the school bus and sadly announced, "I did not play with Hediyeh today!" Volunteering any info about his day is beyond rare, so I pounced on this.

"Oh no!" I said. "Was she in school?"

"No, she was not."

I hope y'all realize that ANY time Ryan and I have a real conversation I report it to you. So you can go back and count how many times this has happened.

I suggested Hediyeh may have been home sick, and that if he wanted he could make her a get-well card.

This morning, Ryan busted out the foam sticker crafts and make Hediyeh THREE foam penguins. I'm told when he got to school he hugged Hediyeh and cried, "I'm so happy you're back!" and then gave her the presents.

Unfortunately, they won't get to play together for a couple of days, because shortly after he got to school, Ryan spiked a fever and I had to bring him home. Of course, he's acting totally healthy now, much to my annoyance - he even asked if he could go back to school this afternoon - and he won't be permitted to return to school til Thursday no matter how he feels tomorrow.

Love will have to wait.

Friday, November 29, 2013

End of an era

So, it looks like I can never play roller derby again.

At practice on Tuesday I sustained a concussion. A minor concussion, but my third, and these things apparently have a cumulative effect - the more you have, the more susceptible you are to getting them in the future, and the more damage they can do.
Photo by Ryan Loewy, about an hour before this stupid concussion.
I don't remember who hit me - probably a bad sign. We were scrimmaging, I was lead jammer (this is a good thing), the opposing jammer was closing in on me as I approached the pack, I started to call off the jam (end the round of play so the other team can't score) and then I was on my back. And then my head hit the floor. Like with my previous concussion, at the time I thought I was ok so I kept playing; I didn't start to feel wrong until I was halfway home.

The point is, it would be really stupid for me to put myself in a position where the risk of hitting my head again is high. Never mind that I got my first concussion in my shower...

So I'm in mourning.

Roller derby has been an indescribably important part of my life for the last 3 1/2 years. Yes, I will stay involved, probably learn to officiate or train rookies or something, but it won't be the same. Hitting people has been very cathartic, and I'll need to find a healthy substitute to keep myself sane. Also, after playing derby, working out at the gym is even more unappealing by comparison. And being part of a ref crew is, I'm sure, a different social dynamic than being on a team.

Stu keeps telling me not to make any decisions until I'm feeling better, but I don't see any responsible decision that ends with me playing again.

If you need me, I'll be sobbing quietly in the corner.

Friday, November 22, 2013

What's that sound look like?

Sadly, I am not a synaesthete. I can not taste colors or smell words, but I wish I could experience synaesthesia for a day.
Image stolen from http://www.pbase.com/johnebones/visiting_professors

I've often wondered if Ryan experiences synaesthesia. When he hears a surprising sound, he will often ask, "What's that sound look like?" but it's likely that's just one of his odd linguistic constructions.

A recently-published study reveals that synaesthesia occurs almost three times more frequently in people on the autism spectrum than in the general population; nearly 19% of autistic participants experienced synaesthesia, vs 7% of the control group.

How cool would that be, if every sound had a color? If the number four tasted like an apple?

Someday, when Ryan is able to communicate such things, I wonder if he will reveal this is how his mind works. I'd be in awe and totally jealous.

Friday, November 15, 2013

A Letter to Santa

Ryan just wrote his first letter to Santa.
If you've been around this blog at all, you know that Ryan loves Christmas. If you're new around here, see this or this or this or this... So it's noteworthy that he has never written a letter to Santa or even asked for a present. I think he really loves the spirit of the holiday, and the decorations and the music,

The other day we were at Barnes and Noble, and Ryan asked if we could buy a little stuffed triceratops. Stu suggested he could put it on his Christmas list, and surprisingly, he agreed this was a good idea! The next day I got some paper and asked him what the letter should say. He dictated the text, I wrote a visual model for him and suggested we add the word "please," and then he wrote out this humble request:
"Santa will bring my a triceratops please. Love Ryan"
I think by age eight typical kids are already questioning the existence of Santa, but "age appropriate" is an all-but-meaningless phrase around here. In our house Dora is still exploring, Team Umizoomi is still doing whatever the hell it is they do, and YouTube is still used for finding alphabet songs. We have yet to graduate from Duplo to Lego or from Little People to action figures.

Blessedly, this means Santa and his reindeer are alive and well.

And Santa will be bringing Ryan a triceratops.

Thursday, October 24, 2013

Sing it with me: "Ryan has a giiiirlfriend..."

A few weeks ago, Ryan came home from school and announced, "It's almost Hediyeh's birthday!" Hediyeh is one of the two girls in his class. I thought it was neat that he knew that; I certainly didn't know that.

Yesterday Ryan told me, "Tomorrow is Hediyeh's birthday!" I asked if they would be having a party in school, but Ryan provided no further information.

This morning, the first thing Ryan said after Good Morning was "Today is Hediyeh's birthday!"

Clearly this is a major event. It's also the first time Ryan has told me any information about another child without being prompted. SoI asked Ryan if he wanted to make Hediyeh a card. He said yes.

I offered him a choice of pink or blue paper; Ryan said "She would like pink paper." Not I want to use pink paper, but I think this is the one my friend would prefer.

I asked if he would rather use a pencil or markers; he announced "We can use both together."

I wrote a model for the words "Happy Birthday Hediyeh" on some notebook paper, and without hesitation or distraction, he copied the words perfectly onto the pink paper. Writing is not a task Ryan generally enjoys. Doing his homework generally devolves into him pretending his pencil is an airplane.

Then he picked up a blue marker and drew a spiral. With a yellow marker he drew a flower. I was in shock - Ryan doesn't like to draw very much, and when he does he typically uses just one color and scribbles.

I forget if this next part was my idea or his, but when he was done with his drawing, Ryan asked if he could decorate the card with stickers. I opened the sticker drawer and asked what sort of stickers he thought Hediyeh would like - Dora? Monkeys? But he was already hard at work with stickers he had selected himself. He shot me a look as if to say, "Cool it, Mom, I've got this under control."

When the card was finished, Ryan said "And now we must take it to school so Hediyeh can see." I had him show the card to Stu and then I helped him put it in his backpack. He looked very proud.

After school I asked if there had been a party at school, and if Hediyeh liked the card, and what I should wear to the wedding.

No answers.

I don't even know if today was actually Hediyeh's birthday, and I don't much care. Today was a day when Ryan thought about a friend and did something nice for her. And that's a pretty good day.


Thursday, October 17, 2013

The big scary question

There's a significant chance that Ryan may not be able to take care of himself when he's an adult. It's not a certainty, but that possibility is always hanging over my shoulder, daring me to turn my head and answer the question that plagues all parents of children with special needs:

What will happen to my baby when I'm gone?

I'm an only child, so Ryan doesn't have any aunts or uncles on my side who could help him. Stu has a brother, but he and his wife have been very busy building their careers and haven't really gotten to know Ryan well; in any case, if Stu and I are old and senile, they probably will be, too. I have a small gaggle of second cousins who adore Ryan, but they're all around my age, and the ones who live nearby don't have children yet.

That leaves Ryan's somehow-related cousin Dylan and my one-year-old nephew Jude as the closest family members who are likely to be around who could look out for Ryan. I my head, therefore, it's critical that Ryan and his cousins grow up together and have a good enough relationship that Dylan and Jude care enough to look out for him. We see Dylan several times a year and the boys get along famously. Jude is still a baby, so we have some time to build that bond.



I should probably also be worrying about who will take care of Stu and me when we're old and senile, because if Ryan were unable to care for himself, he certainly wouldn't be able to help us. But I don't think much about that.

Fortunately Ryan is cute and sweet and little girls like to take care of him, so hopefully down the line he'll marry someone who can keep him on track and pick out a nice retirement home for me.

Friday, October 11, 2013

Poor Broken Camel

Gio's dad is coaching his peewee basketball league this winter. Dee asked me if Ryan wanted to join and play.

A team sport? With typical boys? I really don't see that working out too well.

Dee said "But John will be coaching, he'll keep an eye on Ryan."

"No," I explained, "you don't understand. Ryan would need a one-on-one to keep him on task. He'd have to follow the rules..."

"Oh just do it," Dee encouraged, "they're just little kids, it's not even like it's real basketball." Dee speaks with the authority that comes with having raised five kids.


One of the moms I've been chatting with on the sidelines at Nutcracker rehearsal has raised 13 foster children. As we watch #13 stomp around in her ballet slippers and shriek her objections to perceived slights, "Jean," the perpetual mother, declares she's done.

"Once you have a handicapped one," she confides, "you just can't do it anymore."

First of all, God bless this woman for taking on the raising of a dozen children who needed a loving home. That's just beautiful.

But secondly, I've been thinking about Jean's breadth of parenting experience. Kids 1-12 must have presented her with the full spectrum of challenges neurotypical children can provide, from the mundane to the terrifying baggage related to whatever threw them into the foster care system. Jean had seen it all.

And then she adopted "Cathy," the first in her brood who needed an IEP. Jean doesn't even know what Cathy's current diagnosis should be: at age three she was diagnosed with autism and exhibited unusual behavior that was attributed to being abused by her birth mother, but now at age 12 there are clearly other things going on, so she is being reevaluated. Not knowing what's wrong, of course, makes it harder for Jean to figure out the best way to help Cathy, which leads to frustration on both sides.

Raising Cathy has taken such a toll on Jean, she decided she will never again have the stamina to open her home and her heart to another child. Her experiences have reinforced what I have come to believe:

It can be really hard to raise an atypical child.

All the typical parenting experience in the world will not prepare you. There is no Dr. Spock or Parents Magazine for you. Your own mother probably doesn't have any tips from her experience raising you that would be helpful. Peewee basketball is less about playing basketball than about learning to respond to your name, following directions, learning that there are rules and that it's important to follow those rules, and not stripping naked at inappropriate times.

There's no shame in admitting that this stuff is hard.

Even if you can handle raising 12 foster children.

Wednesday, October 9, 2013

The Nutcracker Dance, part 2

Miss Debbie has decided that from now on Ryan will rehearse with the older kids so he can be in the Russian dance. And lo, the heavens opened, and it was good.

But he's still not 100% content, because he's still expected to participate in activities other than the Russian dance.

Today they practiced the scene he was in last year, in which the toy soldiers fight the mouse king. The first time through today the kids all had foam swords. Miss Debbie gave them a stern lecture to the effect that they were never to hit anyone else with the swords, but really, if you give a bunch of boys toy swords, everyone's getting stabbed.

So they walked through the number with the swords, and then later a bunch of other kids came in and there weren't enough swords for everyone, so Miss Debbie had everyone put their swords away and just pretend to have swords. Well, Ryan found this unacceptable. He started whimpering, the wailing, "I can not find my sword anywhere!" I tried to reassure him that everyone was using imaginary swords, but he wasn't buying it.

Then he went back to whining that he wanted to do the Russian dance.

After class I explained to Miss Debbie that Ryan does best with a numbered order of events. If I could write a list and say, "Step 1 is the soldier scene, Step 2 is the Russian dance, Step 3 is funny third thing" he'd be perfectly fine. However, Miss Debbie doesn't work that predictably. She goes with the flow to accommodate the unique and ever-changing needs of all the kids. Given the wide variety of challenges or handicaps of the participants in the class, I understand the need for her to operate this way, but it makes it a bit more difficult for Ryan.

At least he gets to be in the Russian dance.

The Role He Was Born To Play

Remember last winter when Ryan was a soldier in an adaptive production of The Nutcracker? Well, tis the season, and we're doing that again and kicking it up a notch: he will perform in both the soldier scene and one or two other dances. Ryan has been rehearsing with the youngest group of kids - adorable little girls who are beyond proud of their leotards and tutus. The older kids we got to know last year are in a more advanced class, practicing different dances.

While watching the older kids dance last time, Ryan fell in love with the Russian dance. You know, this number:
The dance involves lots of jumping and running and galloping.

"Can we dance The Nutcracker now?" he asks the air. By "Nutcracker dance" he means specifically the Russian dance. That the older kids will be performing. That he doesn't know he might not be performing.

The younger kids' group is supposed to perform the Chinese dance (but with much much less energetic choreography than this video):
Ryan has zero interest in the Chinese dance. When all the kids are supposed to be walking slowly on tiptoe, Ryan is running circles past them, taking half a dozen extra passes under the arch. The rest of the class - the warm-ups, practicing the Chinese dance, clapping to music - is just the tedium he endures for the reward of exploding into a joyous Russian dance. The sweet high school-age ballerinas encourage him to do demi- pliƩs and tendus at the barre, and he does his best approximations, but he's just filling the time.

I explained all this to the director, Miss Debbie. She said there's no time to change costumes between the Russian and Chinese dances, so doing both was not an option. Well, Ryan has made his preference clear, I noted. Can we switch things up?

Miss Debbie thought a moment. Then she cued up the Russian music and had Ryan and the one-on-one helpers line up in the front of the room. "Ryan, this is your audition," she announced; I'm sure Ryan had no idea what that meant.

The music started, and Ryan came to life. He danced with contagious exuberance. What he lacked in technique he more than made up for in enthusiasm. When the music ended he took a small bow and said "Thank you!" The other moms on the sidelines grinned.

Miss Debbie cocked an eyebrow at me. "Really?" she asked. "We'll have to think about this."

The other parents murmured, "She HAS to let him do it! He's so HAPPY!"

But the director is not yet convinced he can keep himself under control. Her concern, it seems, is that during this scene there are other people leaping and spinning all over the place, and that Ryan's energy might be challenging to contain. "He'll need someone on him," she told the mentors, meaning one of them would have to stay near him on stage, like they did last year. I said I didn't see that as a deal-breaker.

To be continued...

Sunday, September 29, 2013

How to Host a Birthday Party for an Autistic 8-Year-Old


Saturday was Ryan's 8th birthday, and his party could not have gone better. If autism parenting has taught me nothing else, it has taught be to head off problems before they happen: I think through how a potential situation will play out, then make adjustments in advance. I believe our utter success was due mostly to good planning, as well as to good luck that Ryan was having a focused day.

Here's how we prepared:

1) Know your customer. We know what elements Ryan values in a party: there must be extensive decorations, including balloons; there must be a significant number of bodies for him to count; there must be a pinata; and it should go without saying that it's not a party without cake. I let Ryan direct the decorating; he had pretty exacting specifications for how to hang streamers on the swing set.


2) Avoid surprises. As you know, Ryan is a stickler for completion, so I foresaw it would be a problem that my mother was going to be arriving without my father (my dad is a Red Cross volunteer, so he's off being helpful in Colorado). I made a point of telling Ryan a couple of days in advance (and repeatedly thereafter) that Grandma Alice would be at the party but that Grandpa Lee would not. Since it was not a surprise, he took it well.

3) Don't make promises you can't keep. I told Ryan "all his friends" would be at the party, but made sure not to name names, just in case someone didn't show up. I'm glad I did this, because three of his good friends never showed, but since I never specified that they would be there, he was not disappointed.

4) Stay flexible. We told our guests to expect a very casual backyard party. In addition to the swing set and sandbox that came with the house, we set out a few fun things for the kids to play with, and we let them go free-range. There were no organized games, aside from the requisite pinata. Our guest list included three non-verbal autistics, two boys with ADHD, and half a dozen neurotypical kids, with ages ranging from 3 to 11, and everyone had fun in their own way, and with minimal parental involvement.
 5) Don't make unreasonable demands. While I prompted Ryan to greet his guests politely and thank them for coming, I did not insist he spend every second playing with his friends. A few times he ducked into the house to play by himself, and I praised his growing self-regulation skills. Far better to take a break than to get overstimulated and have a meltdown.

6) Remember who the party is for. Going to other kids' birthday parties is always kind of a pain for us because we have to pack gluten free food and cake for Ryan. For Ryan's party, I made sure all the snacks were wheat-free. We ordered regular pizza for everyone, but we ordered from a place that could also deliver a GF pie. Instead of subjecting everyone to some crappy rice flour-based cake, we ordered an ice cream cake custom made without the crunchies in the middle. This is another thing I prepped Ryan for: Ryan had never had ice cream cake before (because they always have the aforementioned crunchies), and I didn't want him to reject a not-baked cake because it was surprising. We had several conversations about how special it was that his cake would be made of chocolate and vanilla ice cream.

7) Take your time. We saved the opening of the presents for after most of the guests had left, mostly because Ryan can't fake liking something he doesn't actually like, but also because he tends to be a leisurely unwrapper. Many people open a pile of presents like they have a train to catch, but Ryan likes to linger over some presents, playing with them as soon as the wrapping paper is off, then eventually getting around to opening another box. There's no reason to discourage his enjoyment of each of his birthday presents, so we let him stretch the process out as long as he wants.
This was by far his favorite gift. They're letters that transform into robots.
8) Welcome a puppy. The next door neighbors brought their itty-bitty puppy over. Every party is better with a tiny puppy.


Wednesday, September 25, 2013

Quacks of the Month: Mark and David Geier

This one's kind of old news, but it's new to me.


Father and son team Mark and David Geier are in the vaccines-cause-autism camp. Their based-on-falsehoods hypothesis is that thimerosal (which is no longer in vaccines) causes mercury poisoning; mercury binds with testosterone; kids with autism have too much testosterone; therefore removing testosterone from the brain frees up the mercury so it can be removed by chelation, thus curing autism.

The Geiers, through their practice, ASD Centers LLC, prescribed autistic children daily injections of Lupron, which reduces the production of sex hormones in the body. This is a way-off-label use of a drug used for chemical castration, the treatment of cancer, and sex reassignment.

Last year, Dr. Mark Geier lost his medical license in several states because of his unorthodox autism treatment. His son, David Geier, was charged by the Maryland State Board of Physicians with practicing medicine without a license; he has a BA in biology and a couple of graduate courses under his belt.

Do I have to explain why it's a bad idea to castrate your child? Apparently I do, because there are lots of desperate families who signed their kids up for this "treatment." I understand why a parent would buy in to this: testimonials on the ASD Centers LLC website extol the Lupron Protocol, saying it transformed their aggressive children into more passive and cooperative little people. Yes, removing testosterone tends to reduce aggression. This doesn't mean your child isn't still autistic, and it doesn't mean these injections are the best way to calm the volatile situation going on in your home.

Our primary job as parents is to help our children grow up to be the best adults they can be. When you reduce their bodies' production of sex hormones, you halt their development, infantilizing them and limiting their future options, both reproductive and otherwise. Please tread carefully.


Friday, September 13, 2013

Stage 5

Wednesday was open school night. All the parents and some kids crowded into the sweltering all-purpose room, where the principal gave a long-winded Power Point presentation on learning standards and metrics and assessments and standardized whatnots that do not apply to Ryan's education.

We walked out mid-presentation and wandered the halls.

First we wound up in the library - sorry, Media Center. Only a couple of weeks into the school year, the librarian already knew Ryan's name and when his class comes to check out books (or perhaps media.)

Then we asked Ryan to show us to his classroom; he only got us lost once. On the way, a classmate of his waved and said, "Hi, Ryan!" And Ryan addressed her by name. The right name. Blink blink blink.

Ryan's classroom was even hotter than the MP room. While Mrs. M talked to the parents and other assorted relatives in the room, a couple of boys played a loud computer game, while another boy dug his hands into a bucket of little plastic toys. Between the heat and the noises, I had a very hard time following the conversation. I imagine this is what school is like for Ryan under the best of circumstances, but he was happily playing with an alphabet puzzle, so I guess only I was in sensory overload
 
I was surprised to learn that Ryan's class isn't called Special Ed: now it's Adapted Curriculum. I don't know when this happened. I put my kid on the short bus and it took him to Adapted Curriculum without my having to do anything different.

The Adapted Curriculum classroom consists of six children - three third graders, a fourth grader, and two fifth graders - each of whom has an individual educational program (IEP). Ryan joins an inclusion class for specials (music, art, gym) and works on his reading and math and science in Mrs. M's room.

Open school night is one of those occasions that highlights how different Ryan's school experience is from the average kid's; how different Ryan is from the average kid. I used to leave events like this in tears, stewing in What Ifs and Whys and Why The Hell Nots. Just walking out of the principal's talk would have upset me - the realization that the wizard had nothing in his bag for me - but on this night, it never occurred to me to cry. (Of course, writing about this has resulted in over-thinking, which always ends in tears.)

In that moment, I suppose I had finally reached the Acceptance stage of my grief. In that moment, I truly accepted Ryan for who he is, without my usual internal fantasy of a day when he can mainstream. In that moment, it was obvious that my baby is perfect just the way he is. There's no reason for him to chip away at himself to fit in when the world can bend and stretch to accommodate him. I could see that Ryan is in the right school setting for him.
 
Intellectually, I've spent years articulating the importance of Acceptance, but the tears always betray me. On open school night, I was walking the talk.

I love Captain Awesome just the way he is.





Tuesday, September 3, 2013

I know my ABCs. Can we stop singing now?

One of Ryan's favorite "screen time" activities involves trolling for alphabet song videos on YouTube. He types "alphabet" into the search bar and follows an endless trail of related videos from around the world - India seems to generate a ton of content, and Ryan delights in the exotic Ex Why Zed endings.
Alphabet Rap. So offensively bad.
His preference seems to be for animations in which the letters have eyes and legs. He's not picky about animation style - the crappier, the better. The songs are usually as obnoxious as the graphics. There's often a train that transports apples and cats and xylophones along with their corresponding starting letters.
Shaun the Train, with TWO objects per letter!
Russian alphabet train.

The related videos also link to numbers songs, nursery rhymes, and other preschool fare. 
Their noses disturb me.
Think Whack-a-Mole.
I've become schooled in the subtle differences between renditions of the Five Little Monkeys Jumping On The Bed song - sometimes there are girl monkeys! Sometimes they sing a whole "No little monkeys" verse! The more versions of the song I hear, the more pissed off I get with the Mama - why the hell does she keep calling the doctor? He's going to give her the same advice every time, and she clearly lacks the parenting skills to stop her uncoordinated little monkeys from jumping on the bed.
 
The one video series Ryan has found that I actually like is a BBC show called The Alphablocks. It's a phonics show - when the letters hold hands they make sounds. Each letter has a distinct personality - M is always hungry, L is an opera singer, X is a superhero, N is Scottish and gloriously negative.

I had hoped that by age almost-8 we'd be done with alphabet songs, but this is Ryan's comfort zone.



Monday, September 2, 2013

The Beads

When Ryan was maybe 4, we got a big tub of assorted plastic beads. He could spend an hour at a time stringing beads, making patterns, sorting out the colors and shapes.

Well, most of the beads were for stringing.
 

He would string the barrel beads, the "dog bone" beads (those sort of triangular ones with bulbous ends), the flower shapes, the bumpy ball-shaped ones, the butterflies.

But he carefully gathered the donut-shaped beads and stashed them on the corner of his bed.


At first, I would encourage him to put ALL the beads back in the tub when he was finished, but soon it became clear that the donut beads needed to live in the corner of Ryan's bed. Eventually, they moved from the corner to directly under the mattress, like so many peas for a princess.

Over the years, I have occasionally asked him why, and the best answer I've gotten is "Because I like them there."

When we moved to the new house, the donut beads moved in the box with his sheets - they had become a necessary part of the bed. Ryan carefully spread them out on the bed platform and covered them with his mattress. Two days ago I found a random donut bead around the house (you know, as you do), and he grabbed it from me to add to his "cowwection."

Then yesterday, Ryan asked me to pick up the mattress for him so he could gather up all the donut beads. He played with them for a while, arranged them into a rainbow, used them to decorate his block tower. When we were picking up toys at bedtime, I asked him where we should put away the donut beads.

He put them in the bead container, with all the other beads. Like this was a perfectly normal thing.

He closed the lid and got into bed.

I felt a little uncomfortable. Like, how can I put him to bed without a dozen beads under the mattress?

But he was fine with it.

I guess he doesn't like them there anymore.

------------------
Addendum: two days after I published this post, the beads took up residence in Mr. Potato Head's butt, and have stayed there ever since.

Wednesday, August 28, 2013

Get the hell back to school


Like many special ed kids, Ryan gets extended school year (ESY) to prevent regression. The ESY kids get a week or two off at the end of June, then have an abbreviated school day for the next month, and then have another two-week break before the regular school year begins.

Even though the time off from school is relatively brief, it highlights how much Ryan needs ESY. The weeks without the structure of school or the benefits of therapies are painful. Behavior regresses by months. Since Ryan is at an age now where he has friends who can read and could conceivably read this blog, I'll just say the last two weeks have been really messy. And stressful. And provided me with lots of aggression to take out on the track.

Ryan loves school. He has been pretty much begging to go to school for days. Every day he has asked, "Is today Wednesday? Can I go on the bus?" Well, today was finally Wednesday. You've never seen a child get dressed as quickly as Ryan threw on his clothes this morning. He marched around the front yard with his backpack on for 20 minutes before the bus was even scheduled to arrive. And after school, he volunteered "My first day of school was fun!"

First day of 3rd grade. Be still my heart.

I, for one, celebrated the first day of school with a long morning nap and a leisurely afternoon walk. Because surviving the break between ESY and school totally earns you a day off.

Sunday, August 25, 2013

A Real Friend

Ryan's new friends aren't just playmates. They're real friends. The kind of friends every person should hope to have someday.

Stu brought Ryan to the playground yesterday, and my friend Dee happened to be there with Ryan's buddies Gio and Lovie and their friends. While Stu was pushing Ryan, Lovie, and Lovie's friend Sally on the tire swing, Ryan asked Stu to stop pushing so he could get off. Sally started making fun of how Ryan talks. Then, immediately and totally unprompted, Lovie snapped at her, "You need to stop saying that because it's mean." And Sally shut her nasty mouth.

While my heart breaks to think of all the Sallys Ryan will meet down the road, I'm so comforted to imagine there may also be some Lovies.

Friday, August 9, 2013

Ryan's Friends, and a chicken

Ryan suddenly has friends.

My friend and teammate Dee has five kids, two large dogs, and 18 chickens; there's a lot going on at her house. Ryan loves going over there to hold the silkie chicken and to be part of the joyous chaos that is a large household.
Silkie chickens look like little llamas.
And he has had a couple of playdates with the two youngest kids. At their invitation.

Absorb that. Typical kids are inviting Ryan to play with them.

Gio is almost 7 and refers to Ryan as "Silly Ryan," to distinguish him from the other Ryans he knows. "He's so funny!" Gio gushes. "He makes me laugh."

Gio and Ryan splash around together in the pool at the Y, along with Gio's 5-year-old sister Lovie. Gio enjoys picking Ryan up in the water and carrying him around the shallow end. Lovie likes to play Marco Polo, and doesn't mind that Ryan needs my help to follow the rules. Both of them can swim well, but they don't care that Ryan can't. Lovie even tried to teach Ryan how to jump into the pool from the side, and didn't seem at all frustrated that her lesson didn't take.

Ryan seems to enjoy their company, and refers to them as "Miss Dee's friends, Gio and Evy." He frequently asks if we can go to their house to "see the chickens," but while we're there he's perfectly open to playing with the humans as well.

These are the most open, accepting children we've met in the last year.

Gio once said Silly Ryan is his best friend.

Pardon me, there's something in my eye.

Monday, August 5, 2013

Neurofeedback Therapy Update #4, or How I Know The Wires Are Hooked Up

I don't know if we've seen real benefits from NT yet, but I can say definitively that the electrodes the nurse connects to Ryan's head do stimulate his brain in some way.

I know this because the nurse found Ryan's Reset button.

After a week or more of what I thought was clear progress, Nurse Brainley announced she was going to start treating a different section of Ryan's brain - the P4, for those following along at home. This bit has something to do with socialization, so I was instructed to make note of whether Ryan became more or less interactive.

Answer: he instantly regressed by several months.

Suddenly, there were meltdowns in places we hadn't seen meltdowns since the winter. All at once, Ryan was declaring the single word "Tummy!" instead of "My tummy hurts/I'm hungry/There's something wrong somewhere and I'm going to localize the problem in my tummy."

And then the nurse went back to poking the previous region of Ryan's brain, and everything was fine again.

Don't mess with the reset button.

Wednesday, July 17, 2013

Neurofeedback Therapy Update #3

I think we're starting to see the effects we've been waiting for. We're about 5-6 weeks into treatment - exactly when Nurse Brainly said we should start noticing changes.

This week, Ryan has been more interactive than ever. Today we even had a couple of real conversations!

First, after I rejected his generous offer of pre-sucked-on hard candy, he asked me "Do you like candy?" I replied that yes, I like candy, but I don't like candy that has already been in someone's mouth, and I'm not too fond of the kind he was eating (the ones that come in a wrapper that looks like a strawberry). He then asked me a follow-up question: "What kind of candy do you like?" Whoa. I told him I like chocolate candy. This prompted him to search the kitchen for chocolate; he's my kid.

The second conversation was more abstract, which was really exciting. Upon noticing that Stu was still not home from work, Ryan asked me "Why does Daddy go to work at the office?" I rewarded his perfect question with a brief lesson on microeconomics.

Being more willing to interact with people has also made him less obsessed with computer games and videos. And a new-found reserve of patience and maturity has reduced the frequency and intensity of meltdowns, so when I turn off the tv or the computer, he doesn't freak out about the transition to his next activity.

This is not to imply that everything is now totally typical, but this week has sure been more manageable than a month ago. Here's looking forward to more progress!

Friday, July 12, 2013

Deer: 1, Car: 0, Ryan: oblivious

Around 12:30pm yesterday I was driving home from the gym via the Boston Post Road. I was in the right lane of a four-lane section, focusing on avoiding the construction zone, when I felt something hit my rear driver-side door. An instant later, there was a deer staring me in the face through my windshield.

So first I'm all

And in the rear view mirror I see the deer continue its sprint across the road, and it's all
like, "Ha ha, I crossed three lanes of Route 1 traffic just to mess with you, puny human! I am indestructible!"

And then I noticed my whole body was covered in tiny shards of glass. And I looked around.

The whole left side of my car is damaged. First the deer hit the back door,
then it somehow flipped around and hit my window and fender,
Note the deer fur where my side mirror used to be.
and finally it smashed its head into the windshield

and gave me the evil eye.

As I stood on the side of the road waiting for the tow truck, I texted a friend to tell her what had happened. Her youngest son, who is quickly becoming one of Ryan's best friends, first wanted to make sure Ryan was ok (yes, he was safely at school), and then wanted to know if I was dead or bloody. These seemed like reasonable questions for a young boy to ask.

Stu came home early to meet Ryan at the school bus while I dealt with the insurance company and the auto body shop and the rental car. When he told Ryan what had happened, Ryan's first question was, "Where is the car?" This was followed by one or two more questions about the whereabouts of the car, and then he lost interest.

When I finally got home, Ryan met me at the door and ran to... see the rental car. "Where is the blue car? Where's the bumper sticker? Do we keep this car?"

I don't think he had any idea that anything bad could have happened to me. This might be rooted in a lack of understanding of cause and effect, or a childish belief that Mommy is indestructible. Probably more the first than the last.

Today I tried testing this point a bit further. I said "Wow, I'm glad I was wearing my seatbelt, because otherwise I could have gotten hurt."

"You could have gotten hurt?" he repeated. Echolalia usually indicates that he is listening but may not have processed the words yet.

"Yes," I continued, "if I hadn't been wearing my seatbelt, my head would have hit the windshield and my face would be very badly hurt."

"Where your car, Mommy?"

I showed Ryan the photos above in the draft of this post. "Can we watch the movie of when the deer hits your car?"

Um, no, there's no video of that as far as I know.

"Can I see Spongebob?"


Yeah, he doesn't get it at all.

Tuesday, July 9, 2013

Quack of the Month: Bleach Enemas

I can't believe I just wrote that title.

So, the Archbishop Jim Humble, through his Genesis II Church of Healing, came up with a treatment called MMS, which he says "restores health from 95% or more of the world's diseases," including HIV, malaria, acne, cancer, hepatitis, and H1N1. And, of course, autism.
Archbishop Jim Humble

According to Kerri Rivera, author of "Healing the Symptoms Known as Autism," autistic behaviors are the result of standard biomedical stuff - food allergies, heavy metals, inflammation, toxins. MMS is administered to kill pathogens, remove biofilms, and neutralize heavy metal compounds, and the result is a decrease in inflammation and sensitivity to allergens. Rivera claims to have cured 93 children of their autism diagnoses.

MMS stands for Master Mineral Solution, a chlorine dioxide-based substance. Proponents of MMS are quick to say that chlorine dioxide is not bleach, but the FDA and many doctors have described it as concentrated industrial-strength bleach. Chlorine dioxide is used in treating drinking water and in the bleaching of flour and wood pulp. It is the disinfectant of choice for eliminating anthrax from government buildings.

The FDA has (twice) warned that MMS can cause nausea, severe vomiting, diarrhea, kidney failure, and life-threatening low blood pressure caused by dehydration. Because, they say, it's a bleach, and you're not supposed to drink bleach.

One of Rivera's treatment protocols calls for giving a young autistic child an MMS enema every two hours for 72 hours around the clock.

Imagine giving your child any sort of enema every two hours for 72 hours.

Now imagine using bleach.

Sure, it would kill pathogens, but it might also kill your child, or your child might get angry and sleep-deprived and try to kill you.

I spent an evening Googling MMS, and I didn't find any reputable sources that advocate its use; if you come across one, please let me know.

In short: for the love of God, don't put bleach into your kid's digestive system. He's autistic, not infectious.


EDIT: I absolutely love how defensive MMS devotees get about this post. I publish all the criticism. Keep it coming!

Neurofeedback Therapy Update #2

Yesterday a friend told me she has been taking her son for neurofeedback therapy for the last two weeks, and she has seen notable improvements (I think for ADHD symptoms?) after each treatment. She asked how Ryan's doing with NT.

I have no idea.

We have days that are more or less challenging, but I don't know to what I should attribute those changes.

Nurse Brainley has asked me to keep a daily log in which I rate each of 10 problematic behaviors on a scale of 0 (not-a-problem-at-this-time) to 10 (significant-problem-dear-God-get-me-out-of-here). I have been looking for patterns, and I have found absolutely none.

Yesterday was fantastic. Ryan was happy to go back to school (I love extended school year!), let the nurse put the clips on his ears at NT without a struggle, didn't freak out over insignificant things, asked strangers their names, and tried to tell me about something that happened at school, using the name of a classmate. Zeros across the board.

The day before, everything was a fight. He whined all day that "I can not find" some toy that was right in front of him or that some random body part mysteriously hurt whenever he couldn't get his way. The only behavior that ranked below a 7 was "sleep difficulties."

So, is neurofeedback working for Ryan? It may be too early to tell. Some days he seems perhaps a bit more focused, a little more verbal. Stu and I have had a few moments in the last couple of weeks when we've stared at each other in shock that Ryan said/did something he had never done before. But we've always had those moments, because Ryan is always growing and changing, albeit more slowly than a typical child his age.

Two days ago Ryan revealed he can snap his fingers. Should I chalk that up to growing up, or to neurofeedback? My inner skeptic knows this is how snake oil salesmen stay in business: people love to connect dots even when those dots have nothing in common but proximity.

To be continued, three times a week for the next couple of months...

Monday, July 8, 2013

Alarming

Ryan is terrified by the sight of fire alarms because he is sure that if he touches one he will cause a fire, and he's a kid, so the urge to touch things is almost irresistible.

He has been avoiding handicapped bathroom stalls ever since that one time he pulled the string for the I-need-help alarm and set off a scary loud buzzer.

And every time we're in my car, he both warns me not to touch the OnStar button and begs to press it, "so there would be an emergency."

"We would not ring the alarm," he warns me, "or we would make da fire and be firemen."


I have tried to explain cause and effect - that a fire will cause the alarm to go off - but he either doesn't get it or doesn't believe me. I have also tried to reassure him that if there is an emergency, we can sound an alarm and firemen will help us, but in his mind when an alarm sounds an emergency situation breaks out and we magically transform into first responders, possibly with uniforms and equipment and extensive training.

Thursday, July 4, 2013

The trouble with fireworks...

It's not the noise. It's not really the crowds. It's only a little the staying up late.

The trouble with fireworks is that you have to get to the viewing venue early in the afternoon and then stay there all evening.

Ryan isn't yet at a stage where we can reliably stay in one place all day without a meltdown, a runaway, or a request to go home.

I know Ryan would love fireworks if we could just, you know, show up five minutes before they started blowing stuff up and then disappear when the show was over.

If arriving two hours beforehand were an option, we might, might, be able to get through that.

But that's never an option.

Tuesday, June 25, 2013

Not yet

I thought I'd be used to it by now.

We've been in our new house almost a full year. Everyone told me a new town takes getting used to. They assured me it takes a while to make friends. They agreed that suburban life is very different from urban life, but that I'd learn to like it.

It hasn't happened yet.

I want to be happy here. I recognize that it's pretty and quiet and that we have tons of room. I acknowledge the schools are better, that we're closer to Stu's job, that there are more opportunities for Ryan here.

There are exactly two things I like about our new home: we have a garden, and I can get to the beach in 10 minutes.

I feel isolated. My house is literally four times closer to a cow than to the nearest store. I hate driving everywhere. I have to drive 40 minutes each way to get to practice, an hour each way three times a week to take Ryan to therapy, and 15 minutes each way to the supermarket. I miss walking three blocks to the bank. Just taking a walk to nowhere feels weird; lots of streets don't even have sidewalks.

I've tried reaching out to my neighbors, and I've found one lady who's pleasant enough to talk to while she's walking her dogs, but no one I'd like to be friends with, and no kids who are willing to play with Ryan. The girls on my team are perfectly nice, but I don't feel like I've made any close friends yet.

I miss running into neighbors on the elevator. I miss the gaggle of kids that would teach Ryan games in our back yard. I miss New Yorkers - people who don't drown you in fake smiles, who don't wave their gun permits around, who have been known to leave the town in which they were born. I miss other members of the Tribe.

You know you're a New Yorker when you're not in New York.




Friday, June 14, 2013

Neurofeedback Therapy Update #1

Many of you have asked for updates on our adventure in neurofeedback therapy. Nurse Brainley says we shouldn't expect to see any behavioral changes for like five weeks, so for now I'll just tell you about the process.

We drive.

A lot.

I pick Ryan up at school at 3:30 and we drive for a solid hour to the clinic. At 4:30 Ryan scampers right in to the waiting room - on our second visit he asked if we could have a sleepover there. Then we walk back to Nurse Brainley's office, where there is a padded office chair and a mismatched ottoman in front of a large computer monitor. Ryan wiggles and laughs as we try to clean his earlobes with an alcohol wipe. He fights putting an electrode clip on his right earlobe, but accepts the left clip without a struggle. He asks if he's going to get a shock; we assure him he's not. Then the nurse glues an electrode to the top of his head, exactly seven inches up from the bridge of his nose. She sticks a cotton ball on top of the electrode and calls it a cotton ball hat.

Cotton ball hat. This is not Ryan. The clips eventually go on the earlobes.
Then Ryan is instructed to sit quietly and focus on the screen. The screen has a video game-like graphic - the first time we went there was a race car, the next time there was a spaceship. When he focuses on the car (or on a spot on the wall or really anything) the car zooms around the track. When his attention shifts or his body moves, the car veers off to the right or slows down. This exercise is supposed to train his brain to focus for longer periods.

He plays 5 or 6 rounds of this "game," Nurse Brainley cleans the goo off his hair, and then at 5pm we get back in the car for another hour.

We're supposed to do this three times a week.

For the next three months.

We've only had two sessions so far, and already I'm annoyed.

But if this therapy pays off, the drive will have been totally worthwhile.

Tuesday, June 11, 2013

Aware


On my way to Saturday's game, I hadn't even made it out of my neighborhood when I started getting angry text messages from Stu: "He's already having a fit and pissing me off." "I HATE this."

Stu has had it up to here with my derby schedule. The events that clutter our calendar. The practices and bouts that keep me away from home at bedtime, when Ryan is most challenging to keep under control.

I apologized again, thanked him again, told him to bring Ryan to the sports center and let him run around on the indoor soccer field before the game.

Ryan happily shadows my team's warm-ups, trying to follow along with our routine. My teammates are all wearing autism awareness patches, courtesy of a new sponsor. I note the peculiarly autistic way Ryan enjoys our exercises, stimming on us running from one edge of his peripheral vision to the other.

Stu says Ryan's a totally different kid when I'm not around. I'm sure he is, but I've obviously never seen that kid. He looks pretty content to me, except for the occasional freak-out over a bag of sand that's too heavy for him to move; I don't know why he thinks he needs to move the bag of sand, but I've stopped expecting answers to those sorts of questions.

I trace the edge of the patch on my jersey and shift my eyes from Ryan, walking the edge of the field between the wall and a soccer goal, to the typical kids playing together in the middle of the turf, and back again. Someday this sight won't hurt, I think to myself; it already hurts so much less than it used to.

The game begins. I look into the crowd and see Stu and Ryan in the bleachers, eating ice cream. I see my friend Niki and her daughters sitting near them. Everything looks under control. I wave as I skate past during skater introductions.

At halftime Stu gives me the death glare. It seems Evil Ryan has emerged in my absence and given Stu a hard time. He keeps muttering, "I'm done. I'm done." He says he wants to leave without Ryan and go home. I tell him to take a walk and just let Ryan play with Niki's kids for a while. He heads for the door and I think I hear him say something about going home.

I tell Niki she's in charge and I skate back to my bench.

I fiddle with the patch on my jersey and try to get my head back in the game. I avoid saying too much to my teammates. Throughout the second half I keep looking around the crowd for Ryan, and to see if Stu has returned. As we take our consolation lap around the track (in derby, even the losers get high-5s from the crowd), I see no sign of Stu, Niki, or any of the kids. I wonder if our marriage has reached the point where I have to choose between Stu and roller derby.

Turns out they were in the building. All of them. And back at our house all 3 kids were bouncing on the couch past 11pm.

And Stu and I have not spoken about it since.

But I am Aware.This is part of our Autism. I skate to escape, but the further I get from responsibility, the more it piles on Stu.

Time to find a good babysitter.

Wednesday, May 29, 2013

Your typical tactics won't work here

Shortly before Ryan's bedtime, he trashed his room. A totally thorough trashing. Quite impressive, actually.

So I laid down Typical Parent Threat #3: clean up this mess now or I'll give away anything that's left on the floor.

But Ryan is not a typical child, so typical parent threats don't always work the way I'd like.

I gave him 10 minutes; Stu set a timer on his phone as a visual aid.

I gave Ryan prompts to keep him on track: start with your rubber duckies, here are some more Legos, you'd be totally sad if I had to take away these dinosaurs.

Every few seconds, Ryan asked Stu for an update on "how many minutes are left?"

He stayed on task for the entire 10 minutes, but he was nowhere near done. I decided to give him an extension.

"Tell you what," I offered, "I'll pick up the books, and you have until I'm finished with the books to put away the rest of the toys."

Immediately he started picking up books.

"Don't worry about the books," I said, "you pick up the toys, I'll do the books."

He pushed some toys around, then asked "Should I clean up the books now?"

"No, sweetie, just work on the toys. I'll take care of the books."

He put a couple of toys on a shelf. Then he handed me a few books.

"You don't get it, do you? When the books are all cleaned up, time is up."

He truly didn't get it. I explained the concept several different ways, and he just kept helping me clean up the books. We played this game for a solid half-hour before declaring the room good-enough; I'm still holding his Play-Doh hostage until the room is actually clean.


How do you get your atypical child to clean his room?


Thursday, May 16, 2013

It's not his fault


A couple of weeks ago a nurse at the neurofeedback therapist's office put electrodes and goo all over Ryan's head, clipped some wires to his earlobes, and ran a series of five short tests called a brain map. For the first test, Ryan had to sit very still with his eyes closed for three minutes (I had him in a death grip for this) to measure his resting EEG. The nurse measured the electrical activity in various parts of his brain while he rested with eyes open, read a book, counted.

Yesterday I sat down with Dr. Brainly to get the results. Dr. Brainly has never met Ryan - has never seen his face - but you'd never know that from our conversation.


"Ryan's resting EEG shows more activity than average. Children with a higher dominant frequency tend to be easily frustrated and hard to calm down, and in the face of stress they have a tendency to show regressive behavior. It's not his fault."

Yes, that sounds like my kid.

"It's not his fault," the doctor emphasized.

I let that sink in.

We always say things like, "Oh, he's just wired differently," but this was my first time opening up the machine and seeing the wires. There they were, firing at 9 Hz instead of the typical 7-8 Hz, demonstrating in a clinical, dispassionate way that there really is something different going on in my kid's head - that he can't help freaking out over things I don't think of as problems.

The doctor moved on to the results of other tests.

"Ryan demonstrated very little focus on reading, and a much greater degree of engagement in math."

Yes. That's what all his teachers would tell you.

Then he became very animated telling me about Ryan's P3 - the area of the brain responsible for staying with a task and finishing things. "Look at this chart! He's three-and-a-half standard deviations outside the norm!"

I have seen the real-world results of this, and it's pretty frustrating.

He talked about "co-modulation" and said Ryan's brain efficiency is low in the area that handles self-awareness. "He's off socially but he doesn't realize he's off," the doctor explained.

Any lingering doubts I had were quickly erased when I saw how much a doctor could tell about Ryan's challenges just by looking at his EEG. So in a few weeks, Ryan will begin a three-month-long course of neurofeedback therapy, which we hope will change his neurophysiology in a way that reduces some of the behaviors that prevent him from focusing in school or interacting with other kids in a positive way.

This was the first time I left a therapy-related appointment without crying. Walking out the door, I even felt a little hopeful for the first time.

It's not his fault.

It's not my fault.

Monday, May 13, 2013

A Tale of Two Ryans

It was the best of days, it was the worst of days. It was a day of "what the hell is that on my carpet?," it was a day of "who is this child and can we keep him?" It was a day of three baths before noon, it was a day of planning a party for a friend.

I'm going to race through the winter of despair [redacted, redacted, I'm going to take my time picking up my friend at the train station so I don't have to deal with this anymore] and get right to the spring of hope. My friend Jessica came to visit - it was the first time we've seen each other since the move. Though he had certainly met her a couple of times, I had no reason to believe Ryan would have any memory of her.

As soon as she and I walked into the house, Ryan jumped out from behind the kitchen counter and shouted "Surprise!" He was totally excited to have company over, and announced that we needed to have a party. He talked a lot about putting up decorations, but somehow never got around to making any. He debated whose birthday we should pretend it was (if it's a party, there must be a birthday, right?).

"Should it be the shed's birthday?"

Uh, sure, Kid.

"No," he corrected me, "the shed does not have a smile to blow out the candles, so it can not be the shed's birthday."

Ah. Right.

"Should it be a bird's birthday?"

"Yeah, I'm sure one of those birds outside has a birthday coming up," I agreed.

"No," Ryan explained, "it could not be a bird's birthday because the birds would keep flying away." He flapped his hands to clarify the point.

Oh.

"Why don't we pretend it's Jessica's birthday?" I offered. This seemed like a good idea - one that was never spoken of again.

Ryan helped me give Jess a tour of the new house, helpfully pointing out what he considered the highlights. "And we have a plant with HEART FLOWERS!" he said with an impressive Vanna White gesture toward one of our bleeding heart bushes.


While Jess and Stu and I were chatting in the kitchen, Ryan kept running off to his room and returning with one toy or another he thought was worth sharing with our guest. A remote control car! A talking parrot doll! A fishing net full of rubber duckies! He demonstrated each one proudly.

Most surprising, he brought down a couple of teddy bears and created an elaborate pretend scenario with them - I believe White Bear was flying away in a hot air balloon and fell and Orange Bear, in a superhero cape, had to get him to the "hop-si-tal" to fix a broken leg. There are two noteworthy things about this seemingly-typical scene: first, these bears almost never leave his bed or serve any function other than being sleeping companions; second, it is extremely rare for Ryan to use his toys to act out stories, and even more rare for the stories he performs to be anything other than scripts from books or cartoons.

Stu and I told Jessica that if all this interaction was because of her that she would never be allowed to leave our house. Ever.



Tuesday, May 7, 2013

20 Years

"Are you going to Reunion?"

In another sign that I'm not a kid anymore, I got a notice that my 20th high school reunion is coming up this fall. My (very few) high school era friends have gone through a flurry of "I'll go if you go" sort of hedging. We'd like to see each other, but none of us is all that anxious to see the other members of our graduating class.

Because there are two types of people: those who enjoyed high school, and those who were crippled by it. If you're one of the latter, you know what I mean. If you're one of the former, let me explain:

You enjoyed high school at my expense.

You mocked me. You bullied me. You teased me for being too smart. Too slow. For not wearing the right jeans. For being shy. For being outspoken. For trying to improve my accent in Spanish class. For not having a boyfriend. For having the wrong boyfriend. For trying to be nice to you. For giving up and keeping to myself.

The only time you were friendly to me was after I had starved myself to the brink of hospitalization; you asked me for diet tips.

Five years out of high school, I still felt like I had to prove I was deserving of my life. Graduated college; so do lots of people. Landed jobs in my field of choice; I should be able to find better ones. Guy attempted date rape; I shouldn't have gone home with him. Had my heart broken; I must be unlovable.

Twenty years out of high school, despite how fabulous my life is, I still question my adequacy at all turns. Didn't make the roster? Must be because the team knows how much I suck at this game. New neighbors aren't welcoming? They must not like me. Depression has escalated? I should be able to keep this crap under control by now.

Twenty years later and I still avoid anyone who gives off that I-loved-high-school vibe, because I know they will only lead me to disappointment. I can smell it when a person is prone to saying one thing to my face and talking about me when I'm not around. I distrust people who love things I consider superficial - makeup, shoes, shopping, goddamn decorative pillows - because I fear they'll treat me like I'm back in high school.

I've spent over half my life avoiding reliving my high school years. So while I'd love to catch up with a handful of people, I'm not so keen to hang out with the rest of you. I don't anticipate any personal benefit to be gained from telling you off in person, so the polite thing would probably be for me to let you have your little wow-those-were-the-best-years-of-my-life party and try to surround myself with people more worthy of my energy.


Monday, April 22, 2013

The next big thing

You know how wary I am of quackery. How angry I get about all the whack-jobs out there peddling their bizarre, untested therapies and "cures" to parents desperate to do something, anything, to help their children function more easily in the neurotypical world.

So it is with a great deal of skepticism and a after whole lot of reading that I have scheduled an appointment for Ryan to have his brain mapped.

Next week I will take Ryan to a doctor's office an hour away from home. They will put a bathing cap-type thing on his head, squirt gel through the holes, and hook electrodes up to his head. Then a nurse will perform a Quantitative Electroencephalograph (QEEG) while Ryan performs tasks like reading and counting.

Based on the resulting brain map, he will then start a lengthy regimen of neurofeedback therapy. The premise is that the brains of autistic people have atypical electrical activity (the brain map will "reveal areas of cortical dysregulation occurring on the right hemisphere"), and that the brain can be trained to rewire itself, resulting in greater "social competence." Ryan will play computer games, and the bathing cap thingy will signal when his brain is firing strangely, and then the game will stop until he brain is typical again. Magical scientific stuff happens, and after a few months the brain has been permanently reprogrammed.

On face this sounds like it could easily be bullshit. So I read up, asked around, and various people I trust assured me that neurofeedback therapy is for real. I met with the doctor, and he seemed legit.

I want to believe this will help Ryan interact with other kids in more expected ways. I really do. But it's a significant investment of time and money, and I don't want to be ripped off or made a fool of, or waste time that could be better spent at a playground.

Because I'm kind of desperate to do something.

Tuesday, April 16, 2013

Hi There Yet

Ryan is even worse at making friends than I am.

But he tries.

He really tries.

We took a walk around our quintessentially suburban neighborhood. A girl on a bike pedaled toward us, and Ryan shouted, "HI THERE YET!" The girl did not stop, but Ryan continued trying to greet her, over and over.

Then we came upon a house where four boys around Ryan's age were shooting baskets in the driveway. Ryan ran ahead of me and stopped dead on their lawn, silently staring at them. The boys shot him an uneasy glance. I approached and said, "Hi. This is Ryan." Remarkably, Ryan said, in an almost perfectly typical way, "Can I play with you?"

The boys stared at him in the same peculiarly cold way all the kids around here stare at Ryan. I held my breath.

"Do you have a basketball?" they asked him. Each boy had his own ball. There was one extra on the grass.

Ryan turned to me. "Do we have a ball at the new house?" No, sorry, we don't have a basketball. I suggested maybe they could share. One boy made it clear that the extra ball was not his. Nobody passed Ryan a ball.

I encouraged Ryan to take a step toward the boys, but he decided it was time for us to "get to the next speed bump," so we moved on.

He seemed content not playing with those boys, but I felt wounded on his behalf. I felt the sting of rejection that was meant for Ryan but which he is, so far, blessedly unable to detect. I pushed down that sense of rejection I felt throughout my childhood - my desire for the mean girls to want to be my friends; the sting of kids asking me to watch their backpacks during recess so they could go play (I really thought that doing them that favor was going to increase the likelihood of them inviting me to play with them the next time).


As we kept walking, a couple of adults gave a brief friendly-enough response to his enthusiastic "Hi there yet" and then returned to their conversation about garden care.

Ryan said Hi There Yet to a couple of dog walkers and some older boys playing basketball in their driveway, and then we went home.

I envy his aloofness to the neighbors' reactions to him. He has made overtures toward many kids nearby, of all ages, and they have all been met with blank stares and cold shoulders. Back in Mount Verminon, Ryan had no problem getting the other kids in our building to include him in their games. Part of the difference may be that we all shared a common back yard - there was no sense of "my space" and "your space" to overcome. Here, the balance of power automatically tips toward whomever lives at the house where the kids are playing.

Or they might just be jerks, like the kids who made my childhood so lonely.

Fortunately, Ryan seems better equipped to handle this sort of rejection than I was.

Or than I am.

Friday, April 12, 2013

Hi Chrissy!

"Hi Chrissy!"

This afternoon Ryan had a long phone conversation with Chrissy, his old one-on-one teacher from Mount Verminon. This was the first time they had spoken since last June.

Before we moved last summer, Chrissy had assured me that she wouldn't drop off the face of the earth, but, you know, life happened, and somehow Ryan never fit into her schedule. Chrissy had been a very important person in Ryan's life for many years, and our move wound up cutting her completely out of the picture. This made me angrier than I'd like to admit - especially when Ryan started asking about her.

Frequently.

Asking about Mount Verminon. Asking to move back to The Old House, because in his mind that's where Chrissy was. I had all but begged her to come visit, or to let us visit her. I offered to match the money she would have made from her second job so she could spend some time with the kid. At one point I flat out told her that she was on my shit list; she didn't seem terribly impressed.  I don't take kindly to anyone who makes my kid cry.

Ryan missed her. I missed her. And I missed the effect she had always had on Ryan. The weird behavioral issues we've seen around here lately, well, I don't think our toilet brush would have wound up in my desk drawer if Chrissy had been around.

And beyond being a stabilizing force in Ryan's life, she had been a huge part of my own personal support system. She was my parenting coach, my crisis counselor, my emergency babysitter, my sounding board, my friend. And then we moved, and I felt completely alone, figuring out how to handle Ryan's transition to his new home/school/environment, learning about the Connecticut special ed system, not knowing anyone or how to meet families like ours.

So Chrissy and I scheduled a time when she and Ryan could talk on the phone. I wrote "Call Chrissy" on Ryan's daily list of steps (having a list to look at helps him visualize his day and eases transitions). I put my cell phone on speaker and dialed Chrissy, praying she wouldn't flake on us.

As soon as she answered, Ryan's face lit up.

Normally Ryan has little use for phone calls - he'll get through one or two exchanges with his grandmother before wandering away from the phone - but for this call, he was fully engaged. I wouldn't describe what happened as a traditional conversation, but Ryan and Chrissy sang songs together and interacted for a solid 10 minutes.

And since traditionally Chrissy Time was a one-on-one experience, Ryan insisted on being alone on the phone with Chrissy. He kicked me out of the room, shut the door on me, then had his own special time with his old friend. I tried coming back into the room, but he quickly brought the phone with him to his bedroom and told me to go away. And when I suggested maybe we should let Chrissy go because the whole "conversation" was getting too weird, he said, "Can I talk to you more on the phone, Chrissy?" So, you know, there was no saying No to that.

I won't reveal the finer details of their very private conversation, but Ryan seemed completely content, and Chrissy said it was a good way to end a long week.

I felt Ryan's relief.

And if things work out, they might even have an in-person play date next week.

Monday, April 1, 2013

It's April again...

It's April, which for many people means Autism Awareness Month, and for many other people means Autism Acceptance Month, and for me means another 30 days of hopping on and off my soapbox to try to make the world a little easier for my kid to navigate.

Let's kick off the month with this video made by an autistic self-advocate named Amanda Baggs. In it she is seen stimming for three minutes, then she types out an English translation. It is a film about communication, about different ways of interacting with one's environment, about what's going on inside the head of a person many neurotypical folks would dismiss.

There's a vibrant mind behind the stims - being expressed through the stims. Try to understand her language, as she has learned to write in ours.

Tuesday, March 26, 2013

Haggadah: the original IEP

Passover is my favorite Jewish holiday. I'm about the least observant Jew you'll ever meet (see here and here and here and here and here and here...), but for me Passover sums up all that is good about Judaism: family and friends telling the story of our ancestors overcoming oppression while sharing dinner and drinking Manischewitz. Extra heavy malaga or go home!

One of the key parts of the seder is the asking and answering of The Four Questions, which are all variations of "Why is this night different from all other nights?" The point is for the adults in the room to teach the children about the history of Pharaoh's enslavement of the Jews and how God led the Jews out of Egypt to freedom. (By the way, Ryan asked three questions during the seder: Can you bring the big fruit salad closer? Can I have another piece of cake with no wheat in it? And Where is the Elmo sticker?)

The Haggadah describes four types of children - the Wise Child, the Wicked Child, the Simple Child, and the Child Who Does Not Know How To Ask - and says we must tell the story of the Exodus to each child in the way that is most appropriate for him or her. I like to think of this as the original IEP*.

The past couple of years we've been using a comic book haggadah. This haggadah depicts the Four Children as variations on the Marx Brothers. (And if you look closely at the picture of the Jews crossing the parted Red Sea you can find a little boy peeing on a cactus.)
We're pretty Reform...
When we got to this part of the seder, I made an attempt to engage Ryan in the asking of the questions, but he made it clear he is Zeppo, the Child Who Doesn't Know How To Ask. The haggadah advises, "Don't bother with questions for this child, just start telling the story."

I'm coming to truly appreciate the Four Children model. The ancient rabbis knew that to pass on our history and traditions we must teach them to every child, but that different children learn in different ways. The Wise Child (Groucho) knows the story backward and forward so you keep teaching more details. The Wicked Child (Chico) thinks the stories don't apply to him, but is still bright enough to grasp the stories if you can make them engaging for him. The Simple Child (Harpo) needs everything spelled out for him. And then there's Zeppo.

You have to teach Zeppo the stories, but you may not get a lot of feedback, or even know if he's listening. The important thing is to keep trying to teach him the story in whatever way makes most sense to him.




* IEP = Individualized Education Program - a document mandated by the American Individuals with Disabilities Education Act (IDEA) to tailor a special ed student's education to his special needs.