Waking Up in Uzbekistan

Use the Fork, Luke

2010-01-27T20:22:00.003-05:00

About a year ago, The Boy decided he likes salad. This is not entirely accurate. What he likes is ranch dressing, and the lettuce leaves (the only thing allowed in his salad bowl) are merely a vehicle. Fine. They're green, and it's a good habit to start.

Lettuce (unlike just about everything else you might put in a dinner salad) is also hard to stab with a fork. The Boy has improved with practice, but has also developed less tolerance for his "misses." He went from stabbing and scooping like a trooper to picking up the occasional leaf and placing it on the fork to giving up on the fork entirely about halfway through the salad, and using his hands.

Both T and I are used to one another's dinner conversation sounding something like this:

"And I called the dentist to make that appointment, so can you -- use your fork, please, not your hands -- can you make sure you're home by 3:00 that day?"

A few days ago, despite numerous reminders, The Boy continued to use the forkless salad-eating method. T got annoyed.

T: [Boy], what part of "Fork not fingers" are you not understanding?

Boy (after a moment's thought): The "fork not" part.

Again, one might think he was taking the question literally, except he couldn't quite hide the little grin after he said it. He also finished his salad with his hands.

Copy Machine

2010-01-11T19:46:00.002-05:00

Quick Update: Medication seems to have brought most of the child I knew back into The Boy's body (knock on wood). Things with the cats (a.k.a. The Feline Fiasco) continue to be "challenging."

After I put The Boy to bed tonight, I realized that I'd never read his school notebook to check for any updates. His teacher had written that a couple of his classmates complained to her that The Boy was copying them, meaning repeating what they said.

We've been down this road before. That time, the repeating was The Boy's attempt to make conversation. Now I know he can stop when he wants to, and he just thinks it's funny. If I'd had any doubt, this conversation, just after I'd read the teacher's note, sealed the deal:

Boy: Mom, can you tuck me?
Me: OK

[I follow The Boy into his room and tuck him into bed... again.]

Me: Boy, I just read your teacher's note, and she said that J and Z were upset that you were repeating them a lot. She said that she would rather hear your words and your thoughts, and I think she's right.

Boy: But I like copying them.

Me: I know, but if you want J to keep being friends with you, you have to think about what she wants too. And you need to stop doing and saying everything she does and says. What do you think about that?

Boy: I think J should stop complaining.

I think our next addition to the after-school activities will be a social skills group of some type.

240 Hours to Go

2009-12-24T17:26:00.002-05:00

After several truly horrible days of misbehaving, talking back, and tantrums, the time-out system has been re-introduced. The Boy gets a 2-minute time-out for each rule infraction, and each instance of mouthing off or whining on the way to or in the time-out chair results in another minute. To his credit, he learned very, very quickly to just sit and take the punishment.

Thankfully, I have not spent all day yelling, which makes this day about 1000 times better than yesterday. Unfortunately, the time-outs haven't really put much of a dent in The Boy's current favorite pastime of torturing the cats. T suggested that we just put The Boy in time-out when he wakes up, and let him get up for dinner. Personally, I think we should just strap a chair to his butt so he can sit down for time-out wherever he is.

Even The Boy has started to realize that the frequency of the time-outs has gotten a bit ridiculous:

[One of the cats comes running down the stairs, with The Boy trailing behind, giggling maniacally.]

Me: Boy, did you push the cat off of the bed to get him to come downstairs?

Boy [honest to a fault]: Yes.

Me: Well, then, I guess I'm grabbing the timer again.

Boy [with a resigned sigh]: I'll get the chair.

I'm laughing now, but it's been so bad that we moved up The Boy's scheduled medication evaluation from January 6th to Monday the 28th (and now owe a lot of favors to those who helped us pull it off).

For the record, we are seeking an evaluation for anxiety meds, which doesn't have anything to do with The Boy's behavior toward the cats, or his smart-mouthing. But as long as we have the psychiatrist's time and attention, we'll definitely be seeking input on a discipline plan.

More to come on what sparked our interest in getting this evaluation, and on how it turns out.

Winter Break still isn't over yet, is it?

336 Hours to Go

2009-12-20T21:07:00.002-05:00

The following is an honest-to-God verbatim exchange that took place at about 11:00 a.m. today.

Me (starting a load of laundry): OK, Boy, let's get dressed. Can you go find a pair of underwear and put them on?

Boy: First I have to pee.

Me: OK, go do your thing.

[Brief pause as I continue loading the washer, and The Boy takes care of business]

Boy: OK, I finished peeing! [Thanks for the update.]

Me: OK, but I didn't hear a flush.

Boy: I don't have to flush.

Me: Why is that?

Boy: Because I peed in the bathtub.

Is Winter Break over yet?

Just Keep Breathing

2009-12-20T17:17:00.001-05:00

Someone responded to my “if I had a book” post on my blog with a nice compliment, and encouragement to write the book. So I've been thinking about what a first chapter would look like. What’s the very first thing I wish I had been told when we were diagnosed?

Breathe. Keep breathing. The world is not at an end, even though it feels that way. Cry if you want to. Yell if you want to. Get a second opinion if you want to. Keep breathing.

Your daughter has a future, even though many people might tell you that she doesn't. Allow your mind to touch for a nanosecond on the concept that your child’s future is now likely to differ from your hopes and dreams. Cry some more. Keep breathing.

Remind yourself that your son is the same amazing little person he was before he got a label. Get angry that it will take him so much more effort than most kids to make other people realize how fabulous he is. Cry a little more. Breathe.

Stop the obsessive researching and spend a few days just enjoying who your child is before figuring out how to “fix” her. Call a friend, and hope he or she is the kind who will just listen without telling you what to do, and that the diagnosis doesn't drive a wedge between you. Cry to your friend. Breathe.

Let your spouse or partner cry to you. Cry together. Breathe.

Be angry and upset at God, Fate, the Universe, because you did NOT sign up for this. Keep breathing.

Call a local or national organization that offers support for parents of recently diagnosed children. Get a parent buddy if you can. Cry to the parent buddy. Breathe.

Keep breathing.

Hug your child.

Breathe.

You, your marriage/relationship, your family and your child all have a future, and it has the same potential for greatness, happiness and satisfaction as it did before you got the diagnosis. The journey and the destination are going to be different, and probably a lot harder, than you thought. That sucks, and it’s OK.

But it doesn't have to suck forever…

If I Wrote a Book...

2009-12-16T09:41:00.003-05:00

...this would be the introduction. IMPORTANT NOTE TO FAMILY MEMBERS: I am not freaking out, so please don't read this and assume I'm losing it.

Please Don’t Read This Book

If you are looking for a book about autism that prominently features the words “healing,” “curing,” “overcoming,” or “treating,” please don’t read this book. If you need to hear the phrases “meant to be” and “happens for a reason,” please don’t read this book, as they will not be allowed within 10 feet. And if your soul has a hankering for chicken, hot and sour or any other kind of soup, please stop reading and head for your local deli.

If you want to learn about the 86 thousand different therapies for children on the autism spectrum, please don’t read this book. If you want to learn how to cook tasty and nutritious gluten- and casein-free treats for your autistic child, please don’t read this book. If you want to learn how God, Jesus, Muhammad, Buddha or any other deity can help you find peace while parenting your autistic child, please don’t read this book. If you want to discover the miracle cure for autism, please, please don’t read this book.

I am not mocking the many, many books about autism that feature these words, phrases and concepts (well, maybe just a little). Many of them are useful, inspiring and well-written. They are also already out there. If you go to amazon.com, select “books” and type “autism” into the search field, you will get 26, 315 results.

What I have not (yet) found is a book about how excruciating and exhausting it can be to parent a child with autism on a daily basis, no matter how much you love that child. I have not (yet) found a book about how even the simplest of daily interactions with a child with autism can require the emotional fortitude of an hour-long family therapy session. I have not (yet) found a book that acknowledges that regardless of your parental love and the wonderful, funny and unique personality of your child, helping a child with autism navigate the world can be a daunting, draining and frequently depressing job.

So that’s where this book comes in. It’s not about your child with autism. It’s about you, and how much harder parenting is for you than for most people. It’s about allowing yourself to acknowledge that you didn't sign up for this. It’s about understanding that being angry and sad about your situation doesn't mean you love your child less, or that you’re a bad parent. It’s about acknowledging that parenting a child with autism in a world largely constructed with “the norm” in mind sucks, for lack of a better word. And it’s OK to say that. Try it with me: This sucks. A little louder: THIS SUCKS!

So we’re all mad as hell and not going to take it anymore. Now what?

I dunno.

Back at the beginning, I should have added if you want answers, please don’t read this book. I can’t wave a magic wand or type a magic sentence and make you suddenly feel satisfied and relaxed in your job as a parent of a child with autism. I can talk about a few ideas and tools I've encountered that have helped my life suck a little bit less. Occasionally these things have even made my life downright enjoyable, if not any easier.

-------------------------------------------------------------------------------------------------

You know the air safety speech that flight attendants give before the plane takes off? When they talk about the oxygen mask, they remind you to put on your own mask before assisting children or others who need help. They say this because if you pass out from lack of oxygen, you can’t help anyone do anything. Taking care of yourself will help you have the emotional reserves to help your child and your family. This goes for the other responsible adults in that family as well. In other words, the less your life sucks, the less the lives of your other family members will suck as well. (Ever heard the saying, “If Momma ain’t happy, ain’t nobody happy”?)

****************************************************************************

In my perfect world, the title of my non-existent book would be This Sucks and That's OK. And yet, somehow I don't think that's gonna make the special display at B&N anytime soon.

7:15 AM to 8:15 AM

2009-11-29T08:15:00.003-05:00

The first hour of my seven-year-old's day has included listening to a song about DNA, researching the chemical compounds created by nitrogen and oxygen and studying the workings of our furnace.

What the hell am I going to get this kid for Chanukah?

Welcome to the World!

2009-10-25T13:10:00.004-04:00

Congratulations to my brother- and sister-in-law on the birth of their son (on their wedding anniversary no less)!

The Boy is excited about the arrival of his one and only "first" cousin, and contributed a few gift suggestions of his own.

T and I look forward to fulfilling our roles as aunt and uncle by purchasing very noisy toys.

I'm kidding. Maybe.

The Student Has Become the Master

2009-10-15T20:28:00.002-04:00

The Boy and I were on our own for dinner tonight, as T is working the swing shift. When it's just the two of us, I follow my mom's memorable example and allow things to be more flexible. I missed my dad when he worked late or traveled, and pizza, nachos or tuna melts on trays in front of Jeopardy helped balance the scale a little. So when we're not all together, we might play a game at dinner or order pizza.

Or both.

Tonight was pepperoni pizza and iphone Scrabble night. As the first part can get messy, I put myself in charge of any button-pushing necessitated in the second part. About 2/3 of the way through our team effort versus the computer, The Boy and I got two blanks and an assortment of letters that I just knew could be turned into a seven-letter word (50-point bonus!). Of course, at that stage of the game, the board was pretty crowded, and I was shuffling letters around for a few minutes trying to take advantage of a nice open space in front of an S.

We had the two blanks, and V, A, I, O, R, with the aforementioned S already on the board in a good position to end the word. As I busily rearranged V-A-R-I-O-U-S (doesn't use the S on the board) into O-V-A-R-I-E-S (still doesn't use the S on the board) and back again, I kept fending off The Boy's sauce-covered hands as he tried to "help" by hitting the shuffle button a million times.

After a few minutes of watching me arrange and rearrange letters, he swallowed his fourth slice of pizza and said, "R-A-V-I-O-L-I-S is a word, right? And it can go right there, in front of the S."

He doesn't even like ravioli.

We are in *so* much trouble when he figures out that he's smarter than his parents.

Love is in the Air

2009-10-15T11:25:00.002-04:00

The Boy's class consists of four boys and one girl, each with his or her own list of diagnoses and/or quirks. The small class size enables him to get to know his peers very well. And the unique personalities have provided him exposure to all sorts of new ideas.

For example, sleepovers have apparently been a popular topic of conversation in his class. So popular, in fact, that The Boy climbed into my car after school and told me that his friend J (the girl in the class) was sleeping over that night. When I explained that these are things that require prearrangement with parents, he was not pleased. "But she will be so disappointed!"

Side Note: Of course, The Boy's preference for his first sleepover is a child with a history of sleep disorders.

I spoke to J's mom, and we agreed that a play date was in order. However, I also learned that J likes to pretend she is having sleepovers, and comes to school packed for them. In her dolls' backpacks. Filled with her toothbrush and six shoes.

Once I assured The Boy that we could have J come over for a play date to start, I explained how she likes to pretend. According to his teacher, he's gotten into the spirit of the thing by pretending to have sleepovers with J during quiet time. They snuggle up with their arms around each other.

The relationship has also progressed to holding hands as they walk from place to place. Last I heard, J asked if they could take a bubble bath together at my house. I guess I should 86 the pizza idea, and order champagne and strawberries.

Of course, The Boy proudly informed J that he no longer takes baths, and so she agreed to join him in a shower.

So far, no one has asked my permission yet, and I don't think it's going to happen any time soon.

Call Me...

2009-10-14T12:25:00.002-04:00

A few weeks ago, my parents came into town with a dual purpose: visiting The Boy (and us) and attending a wedding. T and I happened to have a commitment on the same night as the wedding, and so engaged Ms. C, The Boy's longtime babysitter. While this was slightly unusual for the situation (Grandma and Grandpa are generally the babysitters while in town), The Boy has known Ms. C since he was two years old, and all but shoves us out the door when she arrives.

So we were quite surprised to get a phone call from my mother around 10:30 p.m., informing us that The Boy was still awake, crying hysterically, and that this had started about an hour before they arrived home. He kept saying he missed us, even after my folks relieved poor Ms. C.

The dinner we were attending took a lot longer than we anticipated: We were just receiving our entrees when my mom called. This, coupled with our reluctance to reinforce this behavior by coming home and our knowledge that The Boy was physically fine, led to the decision to stay and finish the meal.

Of course, the decision was not without guilt, and so T stepped away from the table and asked to speak to The Boy. When Grandma asked if he would like to speak to Daddy, The Boy said "No! *You* talk to him."

Then (according to eyewitness accounts), he put his head down on Grandpa's shoulder, still weeping, and said, "They are so irresponsible!"

He was asleep when we got home, and didn't mention anything the next morning, so I guess this time we won't get grounded for breaking curfew.

Literally Speaking

2009-09-16T19:00:00.003-04:00

The Boy is happily entrenched in his new school, and demonstrating more and more of what he knows now that he's in the proper environment. For one, somewhere along the line, he picked up fractions, which I didn't know he knew.

Another interesting development is his sharp increase in appropriate and spontaneous use of idioms in everyday conversation. Typically, people with ASD have a lot of difficulty with this skill because they tend to think about the phrase literally. As an example, generally, if you tell a 7-year-old with ASD that he is driving you up the wall, you'll either get a blank stare or a laugh. He's not being disrespectful: He's trying to figure out how you would drive a car up the wall of a house (blank stare), or thinking how ridiculous you are for thinking anyone, much less a kid, could drive inside the house (laugh). By age 7, neurotypical kids have usually picked up that driving someone up the wall means bothering them a lot. Kids with ASD don't usually "pick up" social or linguistic idiosyncrasies like that; they have to hear a detailed explanation.

The Boy sometimes asks for explanations of these idioms. More and more frequently, he is able to figure out the meaning from the context of the conversation. And, no matter how he picks up the meaning, he can use the phrase appropriately about 95 percent of the time.

Case in point:

Me [packing a new lunch box option]: So how about you try a piece of string cheese now, and if you like it, we'll try it in the lunch box.

Boy [eagerly reaching for the cheese]: Mom, I've *never* met a piece of cheese I didn't like!

This is both true (he ate two sticks of string cheese on the spot) and amazing for a kid with ASD. After all, if you look at it literally, how could you meet a piece of cheese? He just heard that phrase in passing and figured out how to use it appropriately.

And a case of careful what you wish for...

T [watching The Boy plow his way through dinner]: Wow, you were really hungry. But I notice you haven't even touched your cauliflower.

The Boy [reaching out and placing one index finger on a piece of cauliflower]: There. Now I touched it.

To those who argue that The Boy was simply taking the phrase literally, I say that to get the full impact, you have to have seen the canary-eating grin on his face as he poked his vegetables while looking his father straight in the eye. It was a nonverbal "gotcha" if there ever was one.

Why is this a big deal? Well, The Boy correctly interpreted what his dad meant, strategized that pretending to take it literally might allow him to get out of eating the cauliflower, realized that this would also be at least a little bit funny and enjoyed that he had outsmarted the grown-ups. And it all happened naturally and spontaneously.

Just a few short years ago, we were celebrating three-word sentences.

For the first time in, well, years, I can honestly say that I'm envisioning the future Boy with a smile, rather than worrying about all his challenges.

Remind me of this day when he pulls the cauliflower strategy on me, and not his dad.

The Sound of Silence

2009-08-17T17:08:00.004-04:00

For the first time in more than two months, I am alone in my house. T is at work, The Boy is at school and our various relatives are travelling or in their own homes. I never knew that quiet could be so beautiful. And with the quiet comes time to reflect...

The summer was really good for all of us. The Boy really blossomed in movement-based camps geared for kids with his strengths and challenges. He became more chatty (I didn't think it was possible), more outgoing and, I think, a little more comfortable in his own skin. He was genuinely excited for his first day at The Academy, and came home with more energy and higher spirits than he ever did at his last school. His only apparent worry was that I would forget to record Pinky Dinky Doo. (I did not forget.)

Yes, we've all made a lot of progress over the last few months.

And yet... I've had a few reality check moments recently. Those are the ones that highlight the differences between At-Home Boy (whose personality grows and blossoms in a familiar, comfortable environment) and In-the-World Boy (whose personality tends to disappear behind the defenses he must build in order to interact with the unpredictable and often chaotic outside world).

In August, we all went to New York for my family's annual reunion. Last year, Gabriel had a lot of fun with his cousins, and so I had high expectations for this year. I forgot many fewer people attended last year, and that last year we were all in a hotel. This year, we were mostly in relatives' homes.

More people + smaller space = overwhelmed Boy

Having become very used to At-Home Boy and all he can do, it was a jolt to see the contrast between In-the-World Boy and his cousins of the same age. While he did interact with the kids one-on-one, he was simply unable to join in when the whole group was playing and laughing together. The noise and the chaos were too much for him.

At last year's reunion, The Boy seemed fairly close to, if not on par with, his cousins' social and emotional development levels. This year, it was painfully obvious to me that, despite The Boy's mammoth gains in these areas, the social/emotional maturity gap between him and his neurotypical age cohort is growing. This was underscored yet again when I went to change the ages in the sidebar description after The Boy's birthday, and realized that some numbers (like chronological age) are growing much faster than others.

Most days, I know that The Boy and his neurotypical peers are incomparable. One ruler does not fit all in this situation. It's more productive and more accurate to measure his gains against those of his younger self. And it's also much easier to do this with an only child who goes to school with other "quirky" kids.

Then I see how my relatives can talk and laugh with one another as their children entertain themselves. They don't have to excuse themselves from conversations to find a quiet spot for a child who needs constant breaks from the crowd and noise, or sit with that child and explain for the 50th time that we're not leaving yet. I don't blame The Boy for this. I understand where he's coming from.

But it's not easy to have that window into how the other 9/10ths live, and realize how much harder all three of us have to work just to function each day. There's some cliche out there about how life is a marathon, not a sprint, blah, blah. Every so often I'm reminded that I'm one of the few running the marathon with ankle weights. And when I do have a moment to think about it, I realize that my feet are really, really tired.

HAPPY 7th BIRTHDAY BOY!

2009-08-12T20:26:00.003-04:00

As always, our family celebrates not only The Boy's birth, but also that we all made it another year without anyone landing in the psych ward.

Thanks to all the friends and family who were there to drag us back from the brink, and most especially to the grandmas and the grandpas. It's no exaggeration to say that we wouldn't have made it this far without your love and support.

Onward to Saturday and (drumroll)... The Party!

A Brief Hiatus

2009-08-11T14:07:00.002-04:00

I have lots to report, from The Boy turning 7 to our family reunion experience to the latest iphone adventure. However, His Highness is home full-time until school starts on Monday, and unless I pay attention, he'll watch Noggin until his brain leaks out of his ears. (Did I mention we've discovered television?)

I'll be writing more regularly in approximately 138 hours and 10 minutes. Maybe 139 hours and 10 minutes, allowing time to go to the gym after the first-day drop-off.

Dinnertime at My House

2009-07-23T20:22:00.003-04:00

We have Burger Night a lot in the summertime, as The Boy likes cheeseburgers, and his dad can easily make more esoteric/gourmet versions for us without cooking for hours. Sometimes, everyone has different burgers. Sometimes, we use The Boy's fondness for being "dinner buddies" to coerce him into eating the same fare as his parents.

It's a judgement call. Last week we had salmon burgers, and didn't even bother suggesting that The Boy do more than taste a piece of ours (which he refused more or less politely). This week we had turkey burgers, and thought we had made it clear that everyone would be eating the same thing.

We were wrong.

For whatever reason, the initial turkey burger discussion didn't stick, and The Boy went a little berserk when he found out that "normal cheeseburger" was not on the menu. We spent the next 45 minutes coaxing, cajoling, demanding, cooking and listening to crying and screaming. And we had the standard "I-don't-like-turkey-burgers-You've-never-tried-them-how-do-you-know-I-just-know" argument.

After negotiations that would not have been out of place at the Mideast peace talks, The Boy reluctantly agreed to eat a turkey burger if we could play a game at dinner. Five minutes later, T called me out to the deck to show me that the turkey burgers were sticking to the grill and falling apart. We decided to bag the burgers and eat the rest of the meal and whatever else was in the house.

T broke the big news to The Boy that he would, in fact, be having a "normal cheeseburger" for dinner.

About five minutes after The Boy declared victory, T noticed that the burgers, while not attractive, had started to come together. They were edible after all. Since neither of us wanted to negotiate Turkey Talk II, we left well enough alone as far as The Boy was concerned.

Eventually, The Boy wandered out onto the deck to check out the grilling process. T handed him a tiny piece of what would have been his turkey burger, had we not blown our chance. The Boy walked back into the house eating it.

As he swallowed it, he turned around mid-step, walked back out to the grill, and said, "That's good. Can I have another piece?"

T wants to know if The Academy, which has begun collecting tuition for this fall, will refund the money or at least offer a discount if one or both of us is committed to a mental hospital.

iAddict

2009-07-14T13:24:00.003-04:00

T and I finally caved and climbed onto the iPhone bandwagon. While The Boy was in camp, we waited two and a half hours for the privilege of giving our hard-earned cash to Apple. In our defense, two of the nine people in front of us in line were helped within 15 minutes of our arrival. So it seemed like things were moving along. Then, after an hour, we both felt we had invested too much time to leave empty-handed and start over. The process took so long that T had to finish it up on his own so I could go pick up The Boy.

Do we like the iPhone? Yep. I don't think it's a life-changing possession, but I am enjoying it.

Not, however, quite as much as The Boy.

The Boy first learned about iPhones from his OT, who has one. She let him play games occasionally after doing tasks that she wanted him to try. He liked it enough to memorize the names of the applications he wanted me to download so that he could play. When I allowed him to play a few games so that I could use the bathroom in peace, he learned to use the thing faster and better than I have. (This surprised no one, including me.)

Recent conversations go something like this:

Me: Boy, I'd like my iPhone back now. I need to make a phone call.

Boy [parting with said phone reluctantly]: All the applications are exactly where I want them. Don't move anything.

Me: Whose phone is this?

Boy: Yours.

Me: So I get to move anything I want.

Boy: Yes.

Me: Good, I'm glad we got that straightened out.

Boy: Right. Don't move anything.

When asked what he wants for his seventh birthday, he unfailingly replies, "An iPhone." We had to explain that there is no way we are buying him a cell phone or any device with web access at 7 years old. (Note to indulgent grandparents: And neither is anyone else!) T, with the best intentions, made the mistake of saying that the subject would not even be discussed until he turns 10. Now The Boy asks several times a day how many years it will be until he can have his own iPhone.

I passed my old iPod mini down to him, loaded with all his favorite songs, and he told me he'd rather have an iPhone.

I think we can safely say that Apple has branded The Boy successfully.

Brief Apologies

2009-07-08T20:22:00.003-04:00

From the Front:

Boy home full-time from June 26th to July 13th.

Mom primary caretaker during this period.

Time to breathe scarce, time to blog nonexistent.

Upcoming topics... a fun train ride, iPhone addiction, treadmills, and losing my mind (in an amusing way, not the scary way).

More to come...

Amazing Grace

2009-06-28T15:02:00.002-04:00

The Boy might be delayed in some ways, but his first crush developed pretty much on time. Grace, the only girl in his group at camp, is the center of his universe.

According to his counselor, he fought to sit next to her on the bus trips. And if he was reluctant to try something new, all they had to say was, "Grace was just doing this same thing." And off he went.

If I dropped him off in the morning before his lady-love arrived, he parked himself on the ground just outside the front gate to the playground to wait. On one occasion, I walked him to the playground, and when he saw her he took off after her without even saying good-bye. When she changed the direction she was heading, he executed a mid-step u-turn to keep up.

One night, I put my just-washed hair back in pigtails to keep it out of my way. When The Boy saw me, he walked all around me, grinned and said, "You have pretty pigtails just like Grace!"

As the camp session came to an end, he pestered me for days about getting Grace's phone number. It was eerily like playing go-between in junior high. Fortunately, Grace's mom was enthusiastic about the idea of getting together. This is good, because Grace has received the highest honor The Boy can bestow: an invitation to join him on a commuter train ride.

Go Fish

2009-06-17T11:49:00.003-04:00

The Boy has progressed from the card game of the above title to the real thing. Yesterday, at camp, he caught a "medium-sized" fish. Then he threw it back, "so it could go see its fish mommy and fish daddy." And probably its fish therapist after the trauma of the day.

If left up to us, The Boy probably would never have experienced hiking, fishing and such. I like nature in theory better than in practice, and T's job leaves him too exhausted to do much outdoor stuff right now. Not to mention the fact that there are simply too many kids per group in a traditional summer camp for The Boy to feel comfortable.

This camp is different.

Created especially for kids with sensory challenges (including those with ASD, ADD, ADHD, etc.), PEOTSI (Physical Education and Occupational Therapy for Sensory Integration) works to push campers a little out of their comfort zones, while providing enough support for them to feel safe. The Boy's group has only 6 campers, and is typically supervised by three adults and two teenage assistants. The group leaders are all OTs.

And, most importantly, The Boy is having a fabulous time. He's happy and relaxed, and showing the most flexibility we've seen all year. Just goes to show that the appropriate environment brings the best results.

New Uses for Old Things...

2009-06-09T15:37:00.003-04:00

... a title borrowed from a column in one of my favorite magazines, Real Simple (mostly because my life is not). For those of you keeping track (you know who you are, Fran), we were all in California last week, visiting the West Coast Grandparents, and I opted to abandon all routine.

1) Old Thing: Paper Shredder

New Use: Food Prep Utensil

The Boy: What's that? (pointing to the small counter-top paper shredder I bought for dealing with the mail)

Me: It's a shredder.

The Boy: For cheese?

Part of me was really tempted to see what would happen if I said yes...

2) Old Thing: "As Seen on TV" Grabber Arm for high shelves

New Use: Torture Device

The Boy (picking up the grabber at Target, and trying it out): What's this?

Me: It's a grabber arm for lifting hard-to-reach things.

The Boy: Like the cats?

Guess what item we will now never, ever own?

After just one day, The Boy seems right at home at day camp. Today, I watched him for a minute after drop-off. He turned around, saw me looking, and said, "See you later!" while making a "go-away" motion with one hand.

Apparently, I'm not cool enough for day camp. I smiled all the way home.

Party Time! Excellent?

2009-05-27T10:34:00.003-04:00

The Boy's birthday approaches. As he gets older, it's kind of a challenge to figure out how to celebrate. He's been a part of other kids' parties, and heard them talk about it at school. It's almost like he thinks he should want a party. But when we start talking about the details, he remembers that he doesn't like crowds, loud places, kids touching his toys, and so on.

This year is the first that he's asked for a birthday party, and sustained the request over time. In fact, he's instructed me as to what should be on the cake, the color of the paper goods and the lunch selection. We also stumbled on a place that, if they do parties, is a good possibility for a location. The Boy is excited about the idea, and I'm excited about it not being in my house.

In case you're curious:

The Cake: Thomas, Percy and James (but not his trains, special "cake trains")

The Paper Goods: Blue, Green and Red (to match the trains of course)

Lunch: Pepperoni Pizza (surprise)

The Place: A genius of a man whose daughter has sensory challenges opened Sensations Therafun. We were there for three hours on our first visit, and I had to bribe The Boy out with cookie. Sounds like a party to me.

Then I found this book in the Sensations store: I Like Birthdays... It's the Parties I'm Not Sure About. It's like a little handbook of why parties are so tough for kids on the spectrum, and others with sensory issues. It seems so obvious after you read it, but there's a lot of stuff in there I hadn't thought about. And I can't guarantee that a balloon won't pop, for example, but there are lot of situations the book identifies that I can handle ahead of time.

Perhaps my favorite approach to partying with ASD is in this great article I read in Cookie magazine. In fact, I picked up the magazine because of the teaser for this article on the front cover. Nothing like a little reminder that I need to just back off and let The Boy be himself.

The best part of this is that since I hate big parties too, I no longer have to choose between "grin and bear it" or "guilt over denying The Boy."

Semordnilap

2009-05-19T10:45:00.002-04:00

The Boy loves words and word play of all kinds. Knowing this, I recently introduced him to the concepts of anagrams and palindromes.

About two seconds after I explained what a palindrome is, he excitedly said, "The word "eye" is two palindromes!"

I said, "What?"

And he said, "E-Y-E is the same forwards and backwards. And in Spanish, O-J-O is the same forwards and backwards."

Yep. Sure is.

So at dinner a few nights ago, T says to The Boy, "I have kind of a silly, gross palindrome: P-O-O-P!" (Apparently, 6-year-old humor is a permanent part of the Y chromosome.)

The Boy (giggling): Yeah! Like chicken poop!

T (confused, as chickens aren't a common topic of discussion in our house): What? Where did "chicken poop" come from?

The Boy: From the chicken!

After we stopped laughing, T asked The Boy if they had been talking about farms or chickens in his class at school. He told us that "it was in a book" that Ms. Murray read, something about the fox and the chicken poop.

We're pretty sure he meant chicken COOP.

The Poet Laureate of Decatur

2009-05-12T12:28:00.004-04:00

On the Mother's Day picture The Boy drew at school:

Golden Gate Bridges are red.

Some gum is blue.

You are great.

I love you.

In addition to the magnum opus and my gifts, I was allowed to select the flavor of chewing gum purchased at Target "because it's Mother's Day."

_______________________________________________________________________

Overheard while The Boy was playing with his pretend fire station and firefighters:

"Ring! Ring!" The pretend firefighter picks up the emergency phone. "You have a fire? Sorry, only three fires today, and we've already had those."

Salad Days

2009-05-05T18:28:00.003-04:00

A few amusing moments...

A Song in His Heart

The school "Music Invitational" was a few weeks ago. On previous occasions, we've had to hide at the back of the audience during class performances so that The Boy didn't climb off the stage and run to us in the middle of the show. This time, we got to enjoy the whole thing from second row seats as we simultaneously held a video camera, waved and returned blown kisses.

The highlight for us was his class's rendition of "I Know an Old Lady Who Swallowed a Fly." Several other parents commented to us on The Boy's very apparent enthusiasm. Certainly if volume is any indication, he was definitely the most enthusiastic performer in his class.

A close second was the "light show" finale, in which all the students moved different colored glow sticks in time with the Olympic Theme. Since we saw The Boy get his sticks before the lights went out, we could track him by the frantic, excited movements of the two blue lights in the front row. If only it had shown up on video...

Phone a Friend

The Boy got his first phone call from a friend a couple of weeks ago. When Dad (aka T) picked up the phone, a little voice on the other end said, "Is this [Boy's] dad?" When T confirmed his identity, friend B asked to speak to The Boy. The two of them set up a playdate. Considering that the friend is also on the spectrum, I don't think it's hyperbole to call it miraculous. Especially since they both made it through the hour-and-a-half playdate without melting down or fighting.

The Thinker

As many folks know, our family participated in Autism Speaks' Walk for the Cure last Sunday. It was an abbreviated version, since telling The Boy that it would be crowded didn't prepare him for encountering 20,000 people. He was most vocal in his objections.

When we got away from the bulk of the crowd and were loading everything into the car, The Boy said, "It was too loud." T asked, "Was that hard for you?"

And The Boy said, "Yes. It was too loud for me to think."

Later that day, he was playing on the computer while Grandma S and I played Bananagrams. When Grandma upended the bag of tiles to start the game, The Boy told us that we were being too loud for him to concentrate.

It's made me wildly curious about what in his 6-year-old life is requiring such intense thought.

Salad Days

The Boy is known for changing his food preferences at the drop of a hat. We're used to favorite foods becoming gag-worthy overnight. But Sunday gave us all a case of whiplash.

On Sunday night, we all settled in our places for dinner. The Boy looked around the table and announced, "I want salad." Yeah, OK. But we never pass up an opportunity like that, so we prepped a small bowl of arugula and ranch dressing.

He ate the entire thing within 5 minutes, stopping only to wipe the dressing off his mouth--with a napkin and not his sleeve. Then he asked for seconds.

Surprises like these moments are always welcome. Still, even after all this time, I wish he came with an instruction manual.

School Daze

2009-04-28T10:28:00.003-04:00

After an up-and-down year in his first "big boy" school, The Boy is moving on to yet another academic institution. The Academy, where The Boy will start in August, is about 5 minutes from our house, as opposed to The School, which is 25 minutes away. This is a huge bonus for us, as is the smaller class size, better student-teacher ratio and more complete understanding of The Boy's challenges.

The additional $4500 a year in tuition--not so much of a bonus.

We'll probably be able to cut back on speech and OT, if not drop them entirely, which will help. What doesn't help is the fact that I've been "downsized." My position has been cut from the agency entirely. I'm not sorry to get the time back, though the money (little as it was) will be missed.

My new task is to figure out a way to spend those 10 hours a week on something other than autism. I'm taking suggestions...

Milestone: Manipulating the Parents

2009-04-21T12:07:00.002-04:00

It has become a tradition that when The Boy's favorite babysitter, Ms. C, comes to the house, he gets pizza for dinner. However, her most recent visit fell on Monday night. Monday happens to be pizza day at The Boy's school, and he also had leftover pizza for lunch on Sunday. So we gently informed him that he could choose whatever he liked other than pizza for dinner with Ms. C on Monday.

The Boy became displeased.

After a long discussion that featured a lot of whining (but notably no tantrums or melt-downs), The Boy accepted the fact that he was not going to get pizza for dinner on Monday, and opted for a cheeseburger.

For about five minutes, he was very quiet, munching away on that night's dinner. Then he looked up and said, "I want Ms. C to come on Tuesday instead."

Dad eventually controlled his facial expression and asked The Boy if this was because Tuesday's lunch is not pizza, and so the chances of pizza for dinner would be greater.

The Boy got a tiny little smirk on his face before answering, "Yes."

Ms. C still came on Monday, but we did give The Boy a high five for his reasoning and effort.

Jenny McCarthy, Please Be Quiet

2009-04-21T11:46:00.002-04:00

My original post title was Shut Up Jenny McCarthy, but I decided that was a little harsh.

Jenny started out on a roll. She raised a lot of awareness, promoted early intervention and dispelled a lot of myths about autism. She was also really careful about saying that no treatment protocol is guaranteed to work for every child with autism.

Now, Jenny is the co-author of a guide book titled "Healing and Preventing Autism: A Complete Guide." This is a whole different universe from "Louder Than Words: A Mother's Journey in Healing Autism." Why? Because "Louder Than Words" is about a personal experience with a specific child in a specific environment. Jenny's more than earned the right to tell her story and interpret her son's condition as she sees fit. She knows him best.

But a *complete* guide to healing and preventing autism? All autism? Whatever the contents of this book (which, admittedly, I have not read), the title implies that what worked for Jenny's son will work for my son. And while she can claim to be an expert on her kid, she certainly is not the expert on mine.

So I would like Jenny to stop the messiah-making media roller coaster and get off before she undoes her own good work. And I would also like her to shut up... oops, please be quiet.

Since it doesn't seem likely that this will happen anytime soon, I took her guide off the Autism Awareness Month display at my local bookstore and reshelved it (appropriately). In its place, I put several copies of Dr. Greenspan's "Understanding Autism," which is less about healing and more about helping children with ASD function as they are.

This was several weeks ago, and Jenny has not reappeared on the display. Feel free to try this at your local bookstore in honor of someone you know who is happily living, growing and functioning with ASD.

I Hate Autism Awareness Month

2009-04-21T11:30:00.002-04:00

Maybe "hate" is too strong a word. Dislike intensely?

Anyhow, because the media is the way it is, Autism Awareness Month tends to be an opportunity for them to run sensational stories, rather than looking at the daily lives of most of us with kids on the spectrum. If I see another story featuring a smiling set of parents who "cured" their kid, I'm going to put my hand in a blender.

I'm not even going to get into the "can autism really be cured at this time?" debate. [My personal feeling is no, but you're all entitled to your own opinions.] The reason I hate these stories is because the implication is always: If they did it, you can do it too! Just do exactly what they did and it will work exactly the same way for your kid. Often, the story will end with the parents actually saying something like that.

"What's wrong with that?" you ask. "Isn't it inspiring?" NO!

First of all, I take issue with the premise that every ASD kid will respond to Treatment X in the same way. Not all cancer gets treated the same way, and neither should all autism.

Second, I find myself asking, "What if I can't afford/don't want to put my kid through/don't have the energy for/don't buy into Treatment X? Does this make me a horrible parent? Shouldn't I be trying every single option that could possible help my child, no matter how expensive, emotionally draining or outlandish it is? And if Treatment X doesn't work for my kid like it worked on TV, is it my fault? Did I do it wrong? Or is my kid just so beyond help that I shouldn't even have expected it to work?"

Neurotic? Maybe a little. But true. And based on an extremely limited survey of ASD moms I know, it's a reaction not unique to my own somewhat twisted brain.

So if you are an ASD parent, ask yourself if it's really helping you to watch or read these stories. And if you're not, please think twice before you "help" by passing them on to friends or family. Try looking for stories about people with autism having relationships and leading happy, productive lives as they are. It's happening. Really.

Rules of the Road

2009-04-15T10:25:00.003-04:00

The Boy thinks he's ready to drive right now. He tells me how fast to go, what lane to drive in and what exit to take. I remind myself how long we waited for him to talk.

The following comment proves he's a lot more ready for the road than I realized:

[As I slow down to allow someone in front of us to change lanes...]

The Boy: Why are we slowing down? Is there an idiot?

Happy New Year

2009-01-27T20:06:00.004-05:00

Yes, I know it's January 27. But better late than never.

Despite a number of positive developments and great reports, our school conference shortly after Thanksgiving featured the sh*t hitting the fan. All of a sudden, the teaching team felt that "Boy would go much further much faster with more one-on-one instruction than we are capable of providing here." No, we haven't been asked to leave. But no one seems to be able to give us odds on our likelihood of being "offered a re-enrollment contract."

I cried, while The Boy's dad took point at the meeting, and the school psychologist kept looking at me like I was going to make a suicide attempt right there. Why do they always do that?

I cried at work, to my very understanding boss. Then I got it together, counseled some clients, went home and contacted an educational consultant.

Gayle's job is to 1) evaluate The Boy's current school placement and make a recommendation. If she thinks the current school isn't doing it, then her job becomes 2) to find a place that will. In our area, not such an easy job. Since Gayle ran a section of the current school for 15 years, if she thinks The Boy should stay, he'll probably stay.

So that's where we are: She and another professional observed The Boy at school on Monday (yesterday), and we're in the process of scheduling meetings to get results, recommendations, etc.

When we all started believing that it takes a village to raise a child, I didn't know that "village" was code for a paid staff of 30. I figure when The Boy wins his Nobel Prize, he'll just have a longer thank-you list than most.

And now for something completely different: Overnight, I'm patriotic again. Shivers still run down my spine each time I hear "President Obama." National validation of the concept of hope means a little something extra to me. It's a small thing, but I'll take what I can get.

Amusement value of the day: The Boy's latest obsession is geography. If you're ever inclined to watch a person's brain short-circuit, ask the clerk in the B&N children's section to recommend a book on Easter Island for a six-year-old.

Overheard...

2008-11-29T20:51:00.006-05:00

...while passing The Boy's bedroom during the dressing process. It was said in a very calm, matter-of-fact tone of voice:

Daddy, socks are frustrating.

U-Turn

2008-11-29T20:16:00.002-05:00

The week before Halloween, The Boy pulled a 180 and started thriving in school. We started getting teacher notes about cute one-on-one interactions with other kids and great classroom participation. He then tells us how much he loves school.

WHAT? I'm not complaining, really, I'm not. But if he changes gears any faster, I'm gonna get whiplash trying to keep up.

And it's not just the shock of the complete reversal of attitude. His attachment to school is now stronger than it's every been anywhere else. It used to be that when he left school for the day, no matter how much he liked it, he just wanted to go home for downtime. And it wasn't easy to get him back out to do *anything.*

A few weeks ago, a few of the classes at school had a Family Math Games Night. When The Boy's teacher was putting him in my car after school the day before, she asked if we were coming. I said no, because he had a therapy appointment that afternoon already, and he's never wanted to go to anything like that before.

He pitched a fit when he heard me say we weren't going. Even after I told him we could go if he wanted, he reminded me for the next three hours that "I was upset when you said we couldn't go to Math Games Night."

The parents and kids separated for about 20 minutes at the beginning of the event. He bopped off without a backward glance, participated in the games with both us and his friends and consumed his weight in pizza.

Just before Thanksgiving, The Boy's dad and I attended the school's Giving Ceremony, and sat with his class. When given the option of leaving school early with us, he actually CHOSE to return to class with his friends.

He's clearly adjusted, and also made one of his classic developmental leaps. He's interested in everything, asking a million questions a day, and diving headfirst into puzzle-solving. Knock on anything even remotely related to wood.

I'd like the instruction manual. Now please.

A Few Giggles

2008-10-30T20:25:00.002-04:00

1) At school, The Boy gets dropped off in the carpool line outside the gym, and is then escorted in by a teacher. He's still in a five-point harness, so it's a bit of challenge for him to undo the seatbelt.

Me: Boy, can you start working on your setbelt? Start with chest clip. Squeeze with one hand and pull with the other.
Boy (after a moment's wrestling): I got it!
Me: Great, now try the other part [the buckle just below his belly].
Boy: Now I'll do the penis clip.

2) A week or so ago, The Boy had a fight with his dad that led to a low-grade temper tantrum. Usually, when we can't get him to calm down enough to talk with him, we explain that "we can't talk to boys who scream" and tell him where we'll be when he is ready to talk.

Dad: Boy, are you ready to talk now?
Boy (still teary and sniffling): I can't talk to mens and womens who lose their temper!

3) Heard this evening, as we were getting ready for bed:

Boy (singing): Trick or treat! Smell my feet! Give me something sweet to eat! If you don't, I don't care. I'll pull my underwear down. And my sleeper too.

Fits and Starts

2008-10-14T21:06:00.003-04:00

The Boy's dad and I seem to be coming up against the hard fact that our chosen school might not be the right place for The Boy. While we are refraining from any decisions at this very moment, we've begun researching other options, just in case. The powers that be at our current school are reserving judgement until January. But I know what a happy Boy looks like, and what an over-stressed Boy looks like, and I know which one is coming home from school of late.

How do you know the difference between challenging your child and asking too much of him?

The whole process reminds me of buying a pair of women's jeans. Men's jeans get waist and length measurements. It's easy to pick a pair that fits. Women's jeans have meaningless numbers. The only way to find the right fit (at least in my experience) is to try on every single pair in the damn mall, and then do it again. Eventually, on a good day, you find a brand and a size that is comfortable, makes you look and feel the way you want and is more or less within your budget.

It's not so different looking for a school that fits The Boy. The key, it seems, is remembering that The Boy is trying on schools like I try on jeans. I don't take a knife to myself to fit into a particular pair of jeans, and I can't ask him to change who he is to fit into a particular school. We've got to find something with a structure that will allow him to display his best self and enough flexibility to handle the curveballs of ASD.

Not unlike my unmet desire to find jeans that have enough support to make me look good and enough flexibility to allow me to bend at the waist. Did I mention that I hate shopping for jeans? It always leaves me feeling that some part of me is the wrong size.

The take-home, for me anyway, is that the rest of the world will be only too happy to tell The Boy that he doesn't fit in. It shouldn't come from me. When my mom and I shop together, she points out the flaws in the unflattering clothing, not in my body. My job is to look for the flaws in the fit of the school, not the flaws in The Boy.

Here's hoping it doesn't take as long to find a school that fits (or for our current school situation to improve) as it does to find a decent pair of jeans. And don't even get me started on bra shopping.

Come Out, Come Out, Wherever You Are

2008-10-14T21:00:00.002-04:00

I've lost my voice--not metaphorically. I really can't talk.

The Boy thinks this is an absolute riot, probably because I can't say no anymore. He also wants to know where my voice is. So we looked for it. In my pockets, in his pockets, under the kitchen sink, etc. And we decided it's hiding.

Before he went to sleep tonight he told me I would feel better in the morning.

It's amazing how he always knows just when I need a reminder of how sweet and cute he is.

Classical Conditioning

2008-10-04T20:22:00.003-04:00

Some people have pets that come running to the kitchen when the electric can opener is used.

I have a son who comes running to my desk whenever he hears my battery-powered label maker spit out a label.

I know that this is somehow genetically connected to my obsession with The Container Store, but I'm not sure of the exact pathway.

Oops

2008-10-04T07:26:00.003-04:00

I forgot that not using names doesn't mean I'm completely anonymous.

To my family: I'm sorry I scared you. You can stand down to yellow alert status. Yes, things are tough right now. No, I'm not gonna pull a Runaway Bride anytime soon.

I intend the blog to be an accurate picture of life raising a child with autism. This includes the funny stuff, the joy, the indignation and the lowest of the lows. Welcome to the roller coaster ride.

Thank you for the immediate offers of help and support. That's the best medicine for the rough spots.

Under Pressure

2008-10-02T19:44:00.002-04:00

I lied. Mostly just to myself.

The transition to our new school hasn't really smoothed out at all. We went with a specialized school because I'd hoped that I could stop explaining my son to people, and trust that they know what they're doing. They do know what they're doing here, but The Boy is still different enough from others in his class (as far as I can tell) that I'm still doing a lot of trouble-shooting, behavior management and rallying the therapy team for backup.

It doesn't help that His Highness is going through a rebellious phase at the moment (complicated by yet another round of croup and the school transition). We might not have to worry about school because he might not make it to age seven. I'm kidding. Mostly.

So every day in the carpool line, I go through anxiety that borders on a panic attack as I wait for the day's report. Was he disruptive? Was he social? Did he repeat the other kids until they got annoyed? Did he stay with the group?

And this all leads to: Did we make the right choice? Should I have looked at other schools? Am I making a massive mistake that will scar The Boy for life? A very expensive mistake, I might add.

After six weeks of this, I'm literally losing hair.

And I'm apt to forget the bright spots. Like the highly successful speech-therapist-moderated play dates we're doing each week. Or his new hobby of telling stories about Thomas the Tank Engine using stickers and dictation (to me).

Looking back, I usually end these things with a bit of humor or an "up side." So for consistency's sake:

The Boy learned "The Yellow Rose of Texas" in music class. Once he gets a song down, he likes to make up his own words. So I sang something to that tune about The Boy being cute. His response:

Oh Mommy is
Very cute.
But not as cute
As me.

But honestly, I'm not feeling the up side or the humor these days. I'm putting my head down, pushing through and trying to remember that we do get through these periods eventually. If you send good thoughts toward people or ask a deity for favors or whatever, please think of our family.

What You've All (Maybe) Been Waiting For

2008-09-04T17:22:00.005-04:00

So kindergarten is fine. The Boy is adjusting quite nicely, even to getting out of the car in the carpool line and walking into the gym by himself. He's doing the little bits of assigned homework without too much resistance. And at dinner, he's told us about a few of his pals, and said he'd like to invite them over to play.

I was so tense the first few weeks that it almost seems anticlimactic. He wound up with a different teacher than we were originally told he would have, and The Boy isn't the only member of our family who has trouble with last-minute changes to the plan. But everyone is breathing a little easier these days.

In other news, The Boy is now a Star Gymnast, at least according to the ribbon he received for mastering two skills: a pike stretch (sitting on the floor, legs straight in front, touching toes without bending knees) and a rock & roll (sitting with knees hugged to chest, rocking backward and coming back up again unassisted).

And after abruptly asking for and then wearing a bike helmet, he earned his just rewards:

Apologies

2008-09-04T17:13:00.003-04:00

Before I grovel for not updating in three months, a story:

Late Sunday afternoon of one particularly stressful weekend alone with The Boy, we got into a screaming match. When I finally got him to calm down, every time I opened my mouth to try to talk to him about it, he looked me square in the eye and started yelling so he couldn't hear me. I went a little over the edge, shrieking like a banshee. He's sensitive to loud noises, and started yelling, "You're scaring me!"

At the time, I didn't feel guilty, nor did I realize what a breakthrough it is that he could tell me that. Both of those came later (the former in spades).

But when it was happening, I was so mad that I just yelled "Good! Go to your room!" He went to his room and screamed for a while. About 10 minutes later he came downstairs, wiped his eyes and said he was ready to play.

I asked him if he didn't think an apology was in order. He thought for a moment and then said, "I'm sorry you yelled at me."

Nothing like the unfiltered honesty of a 6-year-old to make you reflect on how often apologies are meaningless. And so I refrain from groveling about my lack of updates, as I just didn't feel like blogging about what I was breathing, sleeping and eating 24 hours a day: Getting ready for kindergarten.

More to come...

Finding His Voice

2008-06-07T21:57:00.003-04:00

OK, I've posted four times tonight already. But I just went back and read through all the entries and realized that I never gave the *key* therapy update:

As of about 3 months ago, The Boy tests age-appropriate (i.e., "normal" for a five-year-old) across the board in all speech-language categories. A year ago, I was blogging about how exciting 3-sentence conversations with him were. Today, more than one of his classmates' parents has been absolutely shocked when I told them the diagnosis.

There are still noticable delays in social and emotional skills. But we see *progress* in these areas too, and that's indescribably wonderful. And he can talk to us about what makes him happy or frustrated or upset or whatever.

I don't expect a cure. And I don't expect (or really even desire) normality. That would be a bit much to expect with us as parents. Functionality and happiness are my primary goals for The Boy. And (knock on lots of wood) we seem to be getting there.

Skip If You Don't Want to Talk Politics

2008-06-07T21:16:00.007-04:00

Though I remained ambivalent until the rest of the country decided for me, I can now unequivocally say that

This Momma's for Obama!

This Momma would be even more for Obama if he got Hillary on the ticket with him. (Hey, a girl can dream.) But I was pretty excited about the sociological implications for either of the possible candidates winning the party nomination. I think Obama has begun to generate the same sort of excitement that Bill did after the 12 long Reagan-Bush years, and it's catching.

I do have to admit, though, that supporting a candidate I actually like and respect feels like a little bonus prize. Before the primary started, I was ready to vote for a hamster if that's who was opposing our current dictator... oops, I mean president. By comparison, I probably would have respected the hamster more.

Now I actually have hope for and expectation of (wait for it) CHANGE. Maybe we just kid ourselves that our daily lives are affected by who's in the White House. For me, though, just knowing that a significant number of Americans believe that a black man or a woman can and should be the face of the country is pretty life-changing.

OK, one foot is off the soapbox. Before I step down completely, one last thing: Get out and vote. Write in a hamster if you must, but speak up. We're in the place we are now because of apathy. Start caring.

Look for Us in Beijing

2008-06-07T21:04:00.002-04:00

During some paternal channel surfing, The Boy happened upon a broadcast of the U.S. women's national gymnastics championships. He recognized some of the equipment from his own gymnastics classes, and wanted to watch.

So we watched as a girl did her uneven bars routine.

Mom: You and Ben use those bars at gymnastics, right?
The Boy: Yeah!

The Boy's current uneven bars "routine" consists of stepping on his instructor's knee in order to boost himself up to the low bar, which he does with considerable assistance. While standing on the low bar, he reaches up and grabs the high bar. Then he dangles for a count of ten before dropping to the mat. It's a great accomplishment for him, but not quite at Olympic level.

The girl on TV finished her routine, which ended with some sort of double-twisting somersaulting thing.

The Boy: I could do that.

Don't Call Me Shirley

2008-06-07T20:58:00.002-04:00

The following conversation takes place with The Boy decked out in his Halloween PJs. Yes, we know it's June. But I fell in love with these PJs, and was compelled to buy them despite a completely outrageous price tag. So they're going to get worn until they fall apart. They feature candy corn, spiders and bats.

The Boy: Hi Mommy!
Mom: Aren't you supposed to be in bed?
The Boy: Yes. Come snuggle me? [Note: It is *impossible* to say no to this request. Ever.]
Mom: OK, let's go upstairs. C'mon Spider-Tush.
The Boy: Don't call me Spider-Tush.
Mom: But look, don't you have spiders on your tushie?
The Boy [craning his head, pulling out his elastic and checking his behind]: No, I just have a regular tushie.

'Phone Home

2008-06-07T20:43:00.002-04:00

He wore headphones--not just any headphones, but those 1970s, padded monster-size headphones we all remember from the preschool "listening center." This is a big, honking deal for a kid who has resisted wearing anything on his head since he was old enough to push it off.

Mom: Mrs. T said you wore headphones today!
The Boy: Yes. I listened to a story with Grant. [a new classmate]
Mom: Did you hold them up to your ear like the phone? [This is how we've done hearing tests in the past.]
The Boy: No. I wore them on my head. Like this! [puts hands over ears]
Mom [making a *huge* deal out of this]: That is so great! You know, big boys who wear headphones can listen to stories when they fly on planes.
The Boy [after a moment of pondering]: So when we go to Virginia to see Grandma and Grandpa, I will have Grant and stories on the plane.

I hope Grant's parents (who I have never seen, let alone met) are OK loaning him for travel.

Drat It All to Heck

2008-05-03T19:25:00.003-04:00

As reported by Ms. H, one of The Boy's favorite babysitters:

Ms. H: Boy, it's time to clean up your toys and get ready for bed.
The Boy: NOOOO! (stomps feet)
Ms. H: I'll help you, but you need to get started.
The Boy: No! Flip! Damn it!
Ms. H: What did you say?
The Boy: (very quietly, not making eye contact) I don't know.
Ms. H: Boy, what did you say?
The Boy: I don't know.
Ms. H: Well, I know what you said, and you know what you said, so I don't need to hear it again. But I want to know if you think Mommy would be happy that you said that.
The Boy actually takes a moment to ponder this question.
The Boy: (matter-of-factly) No, I think she would be very sad.

Fortunately, he's not mature enough quite yet to figure out that I was highly amused (as was Ms. H) and slightly embarrassed. Based on Ms. H's impression of The Boy, I could tell from the inflection exactly who he was mimicking, and it wasn't a classmate.

Now I know why my mother's favorite curse was "son of a beanbag."

Extra Foam, Please

2008-05-03T15:38:00.003-04:00

Recently, The Boy's echolalia, which had largely disappeared, has resurfaced. After a number of frustrating weeks, I realized that it's about 20% neurological and about 80% being a pain in my rear.

It happens most frequently when he wants the attention of an adult (usually me) who is talking to someone else, on the phone or face-to-face. The effect is like when there's an echo on your cell phone, and you can hear everything you're saying come back to you. He's usually laughing the entire time he's doing it, which is how I figured out that the vast majority of it is on purpose.

After a number of conversations about the meaning of the words "polite" and "rude," if The Boy catches himself repeating early enough in the sentence, he changes the end so that it won't be a repetition of someone else's words. Pretty clever, really. This strategy led to him telling my mother that he ordered a latte at the local coffee shop, so he wouldn't be repeating her comment about ordering a mocha. It's become a giggle-guaranteed inside joke.

Several weeks later, we were all at the airport headed out of town, and The Boy spotted a display case full of cookies at the airport coffee bar. Since my travel-parenting strategy is basically "anything-you-want-as-long-as-you-are-quiet-on-the-plane," we went to buy a chocolate chip cookie.

When the cashier asked The Boy what he wanted, he ordered a tall non-fat latte.

Imagine the Title of the Movie with This Song...

2008-05-03T07:44:00.003-04:00

I am so sick of the "Hairspray" soundtrack that hearing the overture makes me want to put my hand in a blender. So I downloaded a variety of other music for The Boy, and created a playlist for him on my iPod. Swallowing my personal convictions about Disney for what I'm sure won't be the last time, I included tried-and-true kid favorites from "The Little Mermaid," "Aladdin" and "Beauty and the Beast."

Because there's no CD box for The Boy to look at, he asks me what the name of each new song is as it starts. Since I'm typically driving when I answer (we listen to most music in the car), I'm facing away from him and apparently my answers aren't always clear.

According to The Boy, the two songs I downloaded from "Aladdin" are called "One Jump Ahead" and "Friend Like Peeing."

Broadway Baby

2008-03-30T21:58:00.002-04:00

The Boy recently announced that his favorite song from the "Hairspray" soundtrack (my current commute music) is "Welcome to the 60's," and backed it up by singing the chorus. I didn't even know he was listening.

It's a good thing he said something, because I was about to move on to the cast album from "Avenue Q," which The Boy's dad and I just saw.

Somehow, I don't think the Pre-K would appreciate The Boy bopping around the block center singing "The Internet is for Porn" or "Everyone's a Little Bit Racist."

Esperanza

2008-03-17T19:22:00.002-04:00

Again, it's been weeks since I've posted. Every time I sit down at the computer, The Boy asks for SpanishDict.com so we can look up words such as "skittles" or "fuzzy" in Spanish. Our dinner conversations have become bilingual--no joke:

"Papa, mas agua, por favor."

Too bad I took Latin in high school. Of course, The Boy is happy to correct me as necessary.

On a more serious note, a colleague who runs a support group for parents of kids with autism recently asked me for a recommendation for a developmental pediatrician. If you're a regular reader, you know how I feel about developmental pediatricians (DP) and the type of evaluations they do. And I shared my opinion with my colleague, providing her with some alternatives.

I realized as I talked that a small part of me truly believed that my dislike of the DP was rooted in a "shoot the messenger" philosophy. That is, I was going to dislike whoever bestowed the autism diagnosis on my child, no matter how nicely or sensitively he or she shared the information. But when I began to voice my thoughts to my colleague, I realized that my resentment didn't have anything to do with the DP being the bearer of bad news (or at least, not so much). It had everything to do with the fact that this doctor stole my hope.

Many physicians treating terminally ill patients don't provide firm predictions about life expectancies because they can become self-fulfilling prophecies. Tell a dying man he's going to be dead in three months, and more often than not, he is.

So what do you think will happen when you tell the parents of a three-year-old child to put aside all their dreams for the child's future? Kids have a funny tendency to strive to meet caring adults' expectations. When those adults expect nothing, that's exactly what they get in return. That's why I resent the DP so terribly: If I'd taken her "professional" advice and given up (though I'm sure she would deny that's what she told us to do), the fabulous, beautiful personality inside The Boy might very well have been trapped there forever.

Yes, autism will challenge a parent's hopes and dreams for her child. In my case, it made me realize that fitting in, normality and traditional definitions of success are not as important as I once thought they were.

My hopes and dreams for The Boy now include the desire for him to:
--Find friends who appreciate his unique perspective
--Understand himself and his needs well enough to advocate on his own behalf
--Discover what makes him happy and excites his interest
--Know that he can make a contribution to the world, and
--Feel loved and love in return

I would have taken these things for granted with a traditionally developing child, and I might not have worked as hard as I do now to help that child achieve them. Each and every day, The Boy challenges me to think about how human beings learn these skills, and to reevaluate the "best" way to accomplish these goals. It's not always easy, but it's never ever boring.

The marketing genius who came up with the Marines slogan "We do more before 8 a.m. than most people do all day" should come to my house about 6 a.m. and hang out for a few hours.

Another Sentence I Never Thought I Would Say:

2008-03-17T19:20:00.002-04:00

"You need to eat some more macaroni and cheese before you can have any more cauliflower."

He Got Rhythm

2008-02-16T17:18:00.003-05:00

The Boy's musical tastes have always been unusual for his age (despite brief Elmo and Thomas phases). At about 2-1/2 or 3, he was obsessed with Norah Jones. Eventually, the intensity of his focus let up a little bit. But even now, when Barnes & Noble plays any of her music in-store, he always smiles and says, "It's Norah!"

Today, it's good-bye Norah, hello Dar Williams. For those not familiar with college radio, Dar is a folk-rock singer-songwriter with a strong, faithful following. Her subject matter is most definitely beyond The Boy's comprehension, no matter how precocious he is. And yet his favorite Dar songs are strangely appropriate--to his own life and to his parents':

"Better Things" is about moving past adversity and looking toward the future with hope.
"Are You Out There?" is about the kind of local radio stations that feature conspiracy theory-loving DJs and appeal to adolescents who dream of overthrowing "the system."
"What Do You Hear in These Sounds?" is about psychotherapy.

Coincidence?

Miss Hannigan and Proud of It

2008-01-31T17:50:00.000-05:00

After five years of ignoring the cats, The Boy has noticed them with a vengeance. By the time he's tired of the sneak-up-and-scream-in-their-faces-to-make-their-ears-twitch phase, they'll need a therapist.

One evening, after scolding him about torturing the cats for the millionth time and having him turn around and do it in the middle of the scolding, I sat him on the couch for a time out.

He sat down and started singing the chorus of "It's a Hard Knock Life" from the score of "Annie" (which they've been playing at school).

It's unclear whether this was on purpose, but I wouldn't put it past him.

Peas on Earth (and Mars and Jupiter...)

2008-01-31T17:42:00.001-05:00

The Boy's passionate personal commitment to Thomas the Tank Engine is rivaled only by his burgeoning interest in the solar system. The Boy's dad wins the prize for most creatively manipulating this interest to achieve parental goals.

Dad likes food, cooking and most things culinary, including artistic "plating" of our dinner. One night, he made a pattern on our plates with dots of sauce. The Boy saw the circles, and started naming them after planets.

Whereupon Dad selected nine peas from the pile on The Boy's plate, and lined them up, naming each one a planet.

The Boy ate five rounds of "pea planets" that night, and eventually added the sun, the moon and a comet to each set.

This has worked three nights in a row.

Leaping and Bounding

2008-01-12T07:38:00.000-05:00

The past month has been amazing. Here are just a few of the sweetest moments:

1) When I arrived at ELC to pick up The Boy yesterday, he was playing Go Fish with a friend. No teacher was facilitating. He was just playing. When he saw me, he leapt up, ran to me and said, "Mommy, I got a match! Morgan got a match too!"

There's just no way to explain what an achievement this is for The Boy, and for us. Either you get it, or you don't. I almost cried.

2) One of The Boy's babysitters (C) typically brings her 13-year-old daughter (N) with her. The Boy adores N, and has shoved C out of the way to get to her on several occasions. The last time C came to the house, N was unable to come.

The Boy looked outside on the porch, saw that N wasn't there and said, "I'm feeling sad because N isn't here." Then he pulled it together and went to play with C.

This may well have been the first unprompted statement of a feeling I have ever heard from The Boy.

3) The Boy continues to hone his math skills, with little or no intervention from his parents. He's also fully immersed in the Thomas the Tank Engine phase right now. These two facts produced the following conversation:

The Boy: Thomas plus Toby equals ten!
Mom (confused): But I thought Thomas was number one and Toby was number seven. That would make Thomas plus Toby equal eight.
The Boy (using fingers to illustrate): T-H-O-M-A-S is six letters. T-O-B-Y is four letters. Thomas plus Toby equals ten.

Of course. About a week later, he announced that Thomas times Toby equals 24. My parents bought him placemats printed with addition, subtraction and multiplication tables, and he's started memorizing them.

He's also learned the planets in the solar system, and basic facts about many of them (i.e., Jupiter is the largest, Pluto is the coldest, etc.).

4) At the start of a playdate with a friend he hadn't seen in a few weeks, he spontaneously hugged the kid, and got a hug in return.

5) He's using the Thomas trains to make up simple stories of his own, and act out stories from the books and CDs. First unprompted pretend play *ever*. And they are all performed with Ringo Starr's accent, as he's the storyteller on The Boy's favorite CD.

It's been a lovely month for a lot of reasons. Our family is having more fun with one another than we've ever had before. I credit a lot of this to the move to the ELC, and to the people who helped us get there. It's amazing what a difference an appropriate environment and teachers who listen can make.

But the vast majority of the credit goes to The Boy, with his uncanny ability to let us know when something (like the situation at The Center) is wrong for him, and his unflagging desire to learn and grow. Not that I'm biased.

Fat!

2008-01-12T07:35:00.000-05:00

It's official: The Boy is in to the school of our choice.

We heard before the holidays, but I didn't hear it straight from the source until a few days ago, so I held off posting.

No, that wasn't a hurricane. It was my sigh of relief.

Thanks to everyone who had fingers crossed for us.

Is the Envelope Thin or Fat?

2007-12-12T14:09:00.000-05:00

Anyone besides me remember that question? If the envelope from the college admissions department was thin, you got rejected. If it was fat (with all the enrollment information), you got in.

I don't know if the same maxim applies to private elementary schools, but I sincerely hope not. I can't imagine freaking out over the size of an envelope twice in my life (at least not until The Boy actually applies to college).

The Boy had an "interview" today with the school we really want him to attend next year. I wasn't there (on purpose), but I understand it went just fine. Now, of course, Dad and I are second-guessing and pacing and even crying over the "what-ifs."

We're supposed to hear within two weeks. What good is having a physician in the family if he can't prescribe a sedative that will leave me numb but functional for half a month?

Excuses and Updates

2007-12-05T19:20:00.000-05:00

First, the explanations and excuses:

Yep, it's been ages since I've posted. And if I get into the reasons why, I'll get really mad all over again. So those of you who haven't heard me rant lately get the bare bones version.

1) One of the best teachers The Boy has ever had left The Center last month. After talking with her about why she left, and observing the decline in The Boy's behavior after her departure, T and I came to the difficult decision that we needed to make other child care arrangements for The Boy. His physical and emotional well-being were at stake.

2) We found a new program, which I'll call The ELC, and transitioned The Boy. (All this, despite knowing that in August, he'll go to kindergarten. Somewhere.) He's doing great. His class has 8 kids and two full-time teachers, and he's thriving. We hear about more and more involvement and social interaction every day... more than we ever saw at The Center.

3) I got involved with a group of parents of special needs children who attend The Center and are trying to get their grievances resolved (the same grievances that led us to leave The Center). I came to a meeting with this group and some of the Center's administrators after I had withdrawn The Boy from The Center, and was thrown out by Center personnel. No, I'm not kidding. Today, I received a letter--dated the day I was booted from the meeting, signed by the person responsible for my eviction--telling me that Center policy is 60 days notice of departure, and that I owed this fine institution for December and January tuition (more than $1,000).

I've been restrained in my description, so in case you can't tell: I am livid. I am so angry at The Center administrators (who I hold responsible for the whole mess) that I become incoherent when I try to describe what has happened. There is no way they will ever see that money from my pocket.

I've also been up to my ears in planning for The Boy's education next school year. We've been touring schools, collecting applications (yes, for a 5-year-old), and harassing our therapy team for evaluations. If this sounds like the college application process, it is. One of the schools we're looking at actually costs more than my freshman year tuition.The application for our first choice is in, and The Boy's interview is next week.

Yes. His interview. They are interviewing a 5-year-old with expressive and receptive language delays.

I'm such a basket case that I'm making The Boy's dad take him. The stars aligned so that Dad is free during the interview time, even though I didn't have his schedule with me when I made the appointment. I took it as a sign that neurotic Mommy should stay home and pace.

Now, the stories:

1) When I put The Boy to bed, we snuggle for two minutes before I leave. I say something like, "The clock says 7:45. When it says 7:47, it will be time for Mommy to go and The Boy to stay."

Two nights ago, The Boy added, "The clock says 7:49. When it says 7:51, it will be time for The Boy to leave and the bed to stay on the floor."

2) I cleared out the playroom in preparation for the Chanukah windfall. Last night, The Boy and I were putting one of his new toys in a recently emptied bin. He looked at the other bins and then said, "This one needs a label." Then he took me over to where I keep my label-maker and had me print one. Like OCD mom, like child.

3) The Boy has developed a consuming interest in math, mostly adding and subtracting, with some multiplication thrown in for variety. Just to keep us on our toes, he's teaching himself negative numbers. Did I mention he's FIVE?

At his new school (The ELC), we were walking down the hall one morning when a teacher I haven't met yet leaned out a classroom door and called, "Hi [Boy]! What's 68 minus 70?" Without breaking stride, The Boy threw his arms in the air and called, "Negative 2!" Then he walked to his classroom.

4) The interest in numbers has come with a companion interest in the time. As in, needing to know what time it is, how many minutes until it's another time, and so on. He was fascinated by the process of changing all the clocks in the house for Daylight Savings... so fascinated that he learned how to change them himself. This led to the following exchange:
Boy: Hi Mommy! It's 7:00. [The time at which he is nominally "allowed" to wake us up. We rarely make it that late.]
Me (bleary-eyed): I can't believe it's morning already. *What* time is it?
Dad (rolling over and looking at his bedside clock): Hey, it's not 7:00. It's 5:30!
Me: [Boy], it's not 7:00. You need to go back to your room.
Boy (pulling me out of bed): No! It's 7:00. [Taking me to his room] See?

As you all have probably already guessed. The Boy had reset the bedside clock in his own room to read 7:00 a.m. In reality, it was in fact 5:30 a.m.

When we hit adolescence, I am in SOOO much trouble.

Backstory: Test This

2007-10-22T20:11:00.001-04:00

I said in Chapter I that I was going to write about our adventures in IEPs (individualized education plans) with our local school.

I changed my mind. I don't feel like it. Here's a quick and dirty version of why we aren't considering the public school as an option for next year.

--The school staff set us up in a room filled with toys The Boy had never seen before.
--They started testing him with about 8 adults (no exaggeration) participating, observing and walking in and out of the room.
--Then they commented that he seemed to have difficulty concentrating.

Y'think?

The best part is that when our new therapy team leader (I swear I'll get to her eventually) looked at the various test reports, she told us that the school's results completely contradicted Dr. B's in terms of The Boy's strengths and challenges.

We're in the process of looking at area private schools (some targeted toward special needs kids, some not) for next year. I don't know what kind of school The Boy will attend. The only thing I know for sure is that we're done testing. Any school that needs something in print for evaluation purposes is getting a detailed write-up from each of his therapists. They know him.

For five years, I've tried to define The Boy according to existing labels and scales. I can now say with the assurance of an expert that IT DOESN'T WORK.

So I'm not going to do it anymore, and I'm not playing along with anyone else who does (except for insurance reimbursement purposes--I'm not a complete martyr).

This is just one of the many reasons why it's so miserable to deal with the world of medicine and health insurance when your child is on the autism spectrum. Doctors and insurers like definitions and categories. If you can define it, you can control it. (And trust me, I understand the need to feel some control over this.) But the fact is that most people with ASDs defy any attempts at labeling. Not to mention the fact that labels have very different emotional, cultural and social meanings for each person who uses them. (Can you tell I have a liberal arts education?)

So I'm hereby declaring my intention to let go of the need to control or define or label or categorize my son. The insurance company and the doctors can have their test results if that's what they need to authorize services. But I'm not interested in reducing this beautiful, complex, funny little person to a number on scale.

The people in our lives (personal and professional) who choose to focus on the diagnosis rather than The Boy are cheating themselves out of knowing a truly special child. And that's their loss.

Once Bitten

2007-10-22T19:59:00.000-04:00

Last week, The Boy bit Maxine, a classmate.

Apparently, everyone was sitting at the snack table, more or less quietly munching away.
Maxine was minding her own business.
And The Boy leaned over for a taste.

Fortunately, he didn't break the skin.

When asked why he bit Maxine, he said, "I don't want to talk about Maxine."
When pressed (and offered multiple choices), he said he wanted to see what would happen.

This incident has led to our new slogan:

Eat food, not friends.

Old MacDonald, 5-Year-Old-Boy-Style

2007-09-27T19:00:00.000-04:00

(You all know the tune.)

Old MacDonald had a farm.
E-I-E-I-O
And on that farm, he had a cow.
E-I-E-I-O
Take your finger out of your nose.
E-I-E-I-O
With a moooooo here, and a moooooo there.
Here a moo, there a moo, everywhere a mooooooo.
Now take your hands out of your pants.
E-I-E-I-O

Team Playing

2007-09-22T17:55:00.000-04:00

After six weeks of e-mailing, phoning, begging and juggling, I actually achieved the impossible: All of The Boy's therapists, his pod (age group) leader from school, the school inclusion specialist, his gymnastics coach and both of his parents met in one place at the same time. I'm sure there's some post-modern meaning in the fact that the meeting took place at a Starbucks.

We met the goals of the meeting--to give everyone a workable grasp of The Boy's developmental goals and some good ideas about how to help him achieve them.

And I walked out of that meeting knowing that The Boy, his dad and I are supported by people who are not only excellent at what they do, but also some of the kindest humans I've ever had the privilege of knowing.

For me, the effect of getting everyone together was almost magical. This past year I've felt like I was pushing a huge rock up a mountain (yeah, I get the mythological reference), getting a rest only when my husband took over the pushing. After that meeting, it was like I got a peek in front of the rock and discovered that a whole bunch of people are up there pulling. We have a team in the truest sense of the word.

My junior high gym teacher would be so proud. Even if I still can't do the flexed arm hang.

A Soldier in the Gender Revolution

2007-09-22T17:52:00.000-04:00

A game of hopscotch is in progress in the entry hall.

Dad: Hey, that looks like fun! Can I play?
The Boy: No. Go make dinner.

Backstory: Chapter One

2007-08-27T20:18:00.000-04:00

A few weeks ago, I was telling a friend about a new therapy program we're about to start with The Boy. In order to explain what I find so appealing about this new program, I contrasted it with the approach taken by the developmental pediatrician who diagnosed The Boy a year ago.

After a thunderstruck moment, my friend said, "Now I understand why you were so upset this time last year."

Two basic and flawed assumptions contributed to the time gap in understanding.
1) I assumed that my family's emotional implosion was entirely due to the devastation of hearing the word "autism" applied to our child. Believe me, that's a pain like no other. But it wasn't the only source of trauma.
2) With autism in the media every time you turn around (Larry King, Oprah, etc.), I also assumed that the people in my life were informed enough that they didn't need to hear me rehash "the facts" I'd heard from the developmental pediatrician.

These assumptions kept me from talking about the actual experience of assessment and diagnosis with others. I denied myself both the opportunity to process what I'd just been through, and the reality check of others' reactions to our experience. When I shared with my friend what August-September 2006 had been like for me, I finally got to talk through the moment of diagnosis and get that reality check.

What I ultimately realized was just how much our initial misery was created and fed by the professionals we had consulted.

I can't recreate the experience in detail. It upsets me far too much, and so much of it is a blur of tears and ice in the pit of my stomach. I may never be able to recover all the details, and I'm not sure I want to. Here's what stands out for me now that I've finally started talking about it:

--The diagnostic tools were a series of Q and A tests performed in a sterile doctor's office. The developmental pediatrician (Dr. B) never observed The Boy interact with me or his dad, or saw him in any environment outside her office. Since The Boy had just had his booster shots for the year, you can guess how comfortable he was in an exam room.
--Dr. B spent a total of 1 hour and 15 minutes in the presence of my son (in her exam room) before she delivered her diagnosis.
--When we asked about higher education, Dr. B essentially told us that The Boy would never attend college.
--When I began what would turn into a 3-day intermittent crying jag, Dr. B seemed completely at a loss as to how to respond. (You make a living telling people this sort of news, right?) If my husband hadn't kept it together long enough to get us out of the office, I might still be sitting there, crying.
--When my husband and I asked about parental support groups (which we were clearly going to need), Dr. B stared at us blankly, and then told us to contact "one of the national groups."
--She had a list of 32 recommended actions (itemized), and clearly intended to go over each one of them with us, as I sat there crying. I did stop long enough to tell her that I couldn't take this all in right now, and could she tell us three things we should do immediately.
--We paid $1200 for the privilege of this interaction.

No, I'm not bitter. I'm PISSED OFF when I think about how we were treated. It gets worse when you know that there are a total of 3 developmental pediatricians in this area that do these sorts of evaluations. Our regular pediatrician warned us off the first one. We'd already met and disliked the second. And Dr. B was the third.

Here's the kicker: Our experience is apparently one of the better ones. Ms. Kate reported that the mom of another of her autistic clients was told by the diagnosing pediatrician that if she was lucky, her daughter might get a job sorting hangers at Wal-Mart. The little girl was 18 months old at the time. You'd think that sometime in the course of her education, a doctor would have come across the concept that low expectations and minimal goals produce lousy results.

I didn't know just how much I was dreading a return visit to Dr. B for our follow-up until we found someone through the new therapy program (more on this later) to take over the job of tracking The Boy's progress. Sending the e-mail to cancel that visit was one of the most joyful things I've ever done. Not quite up there with my wedding day or the first time The Boy said "I love you." But damn close.

Coming soon... Chapter Two: What's an IEP?

Geography 101

2007-08-27T20:15:00.001-04:00

The Boy: On the school computer I found the Arctic Ocean and the Specific Ocean.

We Made It!!

2007-08-12T08:16:00.000-04:00

HAPPY 5TH BIRTHDAY, BOY!!!!!!

And a toast to our family---Mom, Dad, The Boy, Grandparents, Aunts and Uncles and all the friends who might as well be family---for making it through the last five years. Thank you all for your love and support.

Honesty is the Best Policy

2007-08-09T19:19:00.000-04:00

Late this afternoon, we took The Boy to an outdoor farmers' market. It's over a hundred degrees here, and The Boy was tired. In spite of this, he was patient. We were only there about 15 minutes (*so* freakin' hot), but by the time we got back in the car, he looked like a baked ham. He was also clearly disgruntled about being forced to endure the errand.

He said he wanted to go to the bookstore, and we obliged given his good behavior. As we pulled into the parking lot, Dad said, "We can go look at books, but it's too close to dinner for a cookie."

If you heard any screaming around 5 p.m. Eastern time today, it was The Boy's response to that statement.

We ended up not going to the bookstore, and The Boy whined, screamed and cried all the way home. We were working on the "ignore it and it will stop faster" philosophy, but by the time we turned onto our street, Dad just couldn't take it anymore.

Dad: OK, Boy, that's enough. Just stop it.
Boy (screaming and crying): NO IT'S NOT! I DON'T NEED TO STOP!!
Dad (with rising volume): It is definitely enough!
Boy (still screaming): NO IT'S NOT!
Dad (now also yelling): IT *SO* IS!
Boy: [inarticulate shrieking]
Dad (yelling): BOY! YOU ARE NOT ACTING LIKE A BIG BOY!! YOU ARE ACTING LIKE A LITTLE BABY!! [short pause] And so am I.

Self-understanding is a beautiful thing. And everyone eventually calmed down.

Evolution of a Stalker?

2007-07-29T20:13:00.000-04:00

Yesterday, we spent virtually all day at Mr. L's house. Mr. L and his parents are friends of ours, and The Boy recently decided that Mr. L is the very coolest person on the face of the earth. So we showed up for a morning playdate, then asked Mr. L and his mom out to lunch with us. The Boy then decided that we were going back to Mr. L's house--a plan with which Mr. L wholeheartedly agreed.

It's a good thing that Mr. L's mom and I like spending time with one another.

It was exciting to see The Boy's social progress in just a few weeks. (This was our third playdate in as many weeks with Mr. L and company.) There was a lot of echolalia during the first two encounters. This happens for several reasons.

1) The Boy's auditory processing is delayed, and echolalia buys him some time to think over what's being said.
2) Adults speak more slowly to children than other children do, and make more of an effort to understand them. In order to communicate with other kids, The Boy falls back on repetition to keep up.
3) He has figured out that it drives me absolutely bananas, and thinks it's hilarious to get a rise out of me.

That said, there was a lot less of it during this last playdate. He asked appropriate questions:

The Boy: Mr. L, do you want to play Candyland?
Mr. L: Yeah!
The Boy: What color do you want to be?
Mr. L: I'll be green.
The Boy: I'll be blue.

There was eye contact and mutual giggling and (with prompting and warnings) turn-taking. When The Boy needed alone time, he would take a musical toy into another room and hang out for 5 minutes. He came back on his own, when he was ready.

Later that day, after we left Mr. L (much hugging), The Boy's dad reported a very pleasant jaunt to the shoe store. The Boy paid attention, waited patiently when necessary and listened when given directions. We were thrilled with all this "big boy" behavior.

To top it off, he had a relatively good night's sleep. He crawled in with me early in the morning (Dad was at work), and went back to bed until after 8 a.m.

That was the last good thing that happened today. Apparently, The Boy changed places with the star of the film "Child's Play" when I was asleep. He threw two colossal public tantrums--the kind where he just opens his mouth and howls as loud as he can. Everything I asked him to do was immediately met by whining and crying. And I just had to stop writing this to put him back in bed for the fourth time since he said good night.

At some point during the afternoon, I finally asked him what was going on. He gave me that pitiful pushed-out lip and said, "I want to see Mr. L." All explanations of Mr. L being busy and promises of future playdates were met with a very pouty, "I want to see Mr. L."

The irony here is that we lived across the street from Mr. L's family for nearly 3 years, during which time The Boy would barely say hello to any of them.

Some mornings, it just ain't worth chewing through the straps.

Our New Crush

2007-07-14T19:24:00.000-04:00

As you might have gathered from "*This* is What to Say," I've been feeling a little frustrated about knowing what to do next for The Boy. Over the last few weeks, some new therapeutic opportunities came to light, and I'm feeling a lot more optimistic these days.

First of all, we switched occupational therapists. Ms. Kate came recommended by Ms. Julie (our longtime speech therapist, now officially considered a member of the family). The Boy *loves* Ms. Kate.

During our first session with her, The Boy mostly played in her therapy studio while I answered a lot of questions. During the second session, he spent the entire time saying "no" to everything Ms. Kate asked him to do. Yet she continued to follow his lead, integrating herself into his games and refusing to be left on the sidelines.

Apparently, this is the key to The Boy's heart, because from the minute we left the studio that day, he asked to go see Ms. Kate every day until the next session. By our fifth trip, he launched himself into her arms to say hello. And when he found out she was going on vacation, he asked to go too.

Ms. Kate is much more focused on sensory processing issues than fine motor skills (such as pencil grip or using scissors). That's not to say she doesn't work on those things with The Boy. She works from the assumption that the skills we all need to process sensory information are an integral component of our ability to perform fine and gross motor tasks.

And she found the way to my heart too: Practical, fun suggestions for therapeutic, sensory-focused play at home. Wikki Stix are portable and have a zillion uses, and The Boy loves them. Shaving cream in the bath is hilarious and cleans up in about 10 seconds (music to my OCD ears). In case you can't tell, I like Ms. Kate a lot too.

As if the rest of it wasn't enough, on the way out of our fourth session, she made a point of stopping me to say that The Boy is doing great, and that he and I have a lovely relationship. No matter how far out of school I am, it's always nice to get positive strokes from "the professionals."

On Monday, Ms. Kate and her family will be off to England for about a month. The Boy and I will just have to survive on the memories until her return. Sigh...

What Rhymes with Surreal?

2007-07-09T10:50:00.000-04:00

Recently, my mom reminded me of a rhyming game we used to play in the car when I was very young. I thought The Boy might enjoy it, so we gave it a shot.

Mom: I'm thinking of a word that rhymes with "cat." You wear it on your head, it is a...
Boy: Hat!
Mom: Good job! I'm thinking of a word that rhymes with "rain." It rides on the tracks, it is a...
Boy: (giggling) Train!
Mom: Great! I'm thinking of a word that rhymes with "blue." It's where animals live, it is a...
Boy: Fish!

Baseball on the Brain

2007-07-05T08:09:00.000-04:00

At the dinner table...

The Boy: Daddy, please close it.
Dad: Close what?
The Boy (pointing): That.
Dad (putting his hand on it): You mean the water pitcher? [It has a snap-top pour spout.]
The Boy: Yeah.
Dad: OK, then you need to say, "Daddy, please close the water pitcher."
After a moment of intense thought...
The Boy: Daddy, please close the water batter.

Playing Candyland...

The Boy (picking a card): I got orange!
Mom: You did. Do you see where the orange is?
The Boy: Yes.
He moves his marker to the orange square. Then he tries to hand me the card, and it hits the floor.
The Boy: Safe!

In the car...

The Boy: Mommy, can I have some fish please?
I hand him the baggie over the seat. A goldfish falls on the floor during the transfer.
The Boy: It went foul!

This is What to Say

2007-06-28T21:19:00.000-04:00

The following is an e-mail from a good friend of mine, sent in response to a somewhat strung-out rant that I sent him. (My original e-mail appears below his, but you don't have to read mine to get the point.) When I comment on the way some of my friends and family appear determined to ignore the huge mountain my family is climbing, I often hear, "Well, people just don't know what to say." Consider my friend's heartfelt response a crash course in how to talk to someone like me. J, if you're reading, thanks for getting it right.

Dear Dagtag,

I wanted to reach out to you, because I absolutely couldn't let a week go by with this email in my inbox.... Since reading [it] last Thursday, you've been on my mind more than ever. I never do well remembering the difference between sympathy and empathy--which one is it that makes me want to eat my heart out--I don't know, let's just call it friendship.

We wrote an email yesterday to a friend of [my wife's] family who is [about to be deployed to Iraq.] As we sat, struggling for something to say, we were oppressed by the desire to resort to cliches. Ultimately, that's what we did--something about the enormity of the situation for him, the risk for him and his family rendered us nearly mute. Of course, perhaps things become cliches because they are all you can say when you feel sadness and longing on behalf of a loved one.

Some cliches for you, that are all I can really offer:
You are in my thoughts and in my prayers.
Please make sure you are taking care of yourself.
I wish I were there to give you a hug.

There's no way for me to comprehend how you must feel--but please, on days when things feel rough, do remember that I am beaming good thoughts towards you, T and The Boy.

Love, --J.
---------------------------------------------------------------------------------------------------------
Dear J,

The Boy is doing well. He's in a stable period right now, meaning no huge leaps each day. Every time this happens, I start freaking out that we're not making progress, when I know good and well that's how kids work. And I know that I'm doing the best I can for him. Intellectually, I know this.

Then I... started helping [a friend] research some treatment options, driving myself nuts in the bargain. I think the real issue... is that we're approaching a year since the formal diagnosis, and the looming re-evaluation has made me realize some of my fantasy beliefs are still lurking. I just acknowledged that I had this idea last August that we would work really hard in therapy and provide him with everything he could possibly need and that when we went back for more testing this year, he'd drop off the spectrum and everything would be fine. Denial, anyone?

I've always known that there's no "cure." And that all the literature on the shelves with parent testimonials about how they cured their kids is cruel garbage. But emotionally, I let a tiny part of my brain hope. And it's painfully obvious right now that though he is the best little boy ever on the planet (no disrespect to your son, of course), he is still very much autistic and always will be.

I hate this disease/disorder. I hate all the "extra" work we have to do to parent. I hate all the extra work that The Boy has to do just to get through the day (though I'm sure he's completely unaware of it at this point). And I am so angry at God, the universe, karma, fate, whatever that I could just scream.

I'm sure this brightened up your day, right? Don't worry about answering.... I think I just needed to vent. Thanks for reading.

--Dagtag

Deja Vu

2007-06-11T20:41:00.001-04:00

"Mommy, give Baby X back to [X's dad]!"
--The Boy's reaction upon seeing me hold our friends' new baby.
...

So some friends of ours who live nearby had a baby last week. (They also read this occasionally, though I'm guessing probably not much in the last week. However, if either of you new parents are here, congratulations!) Their experience is strikingly similar to ours: A botched C-section, a long recovery and a baby who wants to be held all the time.

It's simultaneously unnerving and reassuring.

Unnerving: It brings up all these feelings I had in the first days of The Boy's life about how motherhood was NOT what I expected, and why was everyone so crazy about The Source of My Pain and not helping me? Ladies and Gents, welcome to post-partum depression. (Tom Cruise, kiss my butt, and not in any kind of sexual way, either.)

Reassuring: At last, we're NOT THE ONLY ONES. In fact, one of the new parents actually said to us, "It's so nice to hear that not everyone had the perfect experience." 1) At least half of the parents they've talked to are lying or in denial and 2) Amen, brother. I wouldn't wish our first three months on anyone, but at least now I don't feel like we were singled out for some sort of special hell.

In those early days, I would have *loved* having a slightly older, more experienced friend around to help me, especially after all the grandparents went home. So my husband and I have brought food over, checked to see if they needed groceries, held the baby for an hour, etc. Nothing heroic, just plain, everyday, necessary stuff. I guess it's in the vein of needing someone to benefit from the worst of our experiences.

A request to baby-sit tomorrow brought on this huge wave of anxiety and sadness that dumped me back into those first few weeks with The Boy, when I felt like I couldn't do anything right. On top of that, there's all the regrets I have now that I understand a little bit more about newborns and The Boy in particular. No, I DO NOT feel guilty. I did the best I could with the tools I had. But I do wish I'd had a few more tools, not just for The Boy's sake, but for mine as well.
...

"I am NOT going to talk about the table any more, and I am sitting at the counter."
--The Boy's reaction to being told for the 15th time that when the whole family is home for dinner, we eat at the table.

Three Things I Don't Care About:

2007-06-10T11:40:00.000-04:00

1) Pitcher Roger Clemens's sore groin. In fact, if I never, ever hear the phrase "sore groin" again in my life, that would be OK. (We've watched a lot of SportsCenter this weekend.)

2) The number of dog remains found on QB Michael Vick's property. I don't think the issue here is whether 25 or 30 dogs were killed. (See above note about SportsCenter.)

3) Anything having to do with Paris Hilton, including her jail time. Maybe they can pit her against one of Vick's dogs instead of assigning community service.

And one thing I care about a lot:

The Boy, who has just arrived home, and so cut off his own story. This week, we're into Mardi Gras beads. He turned to his dad, looked him over and said, "I like your blue shirt." Then he made him bend down, slipped a strand of blue bead over his head, and said, "I like your blue shirt with the blue necklace." Isaac Mizrahi, look out.

Walk This Way

2007-05-25T14:22:00.000-04:00

As many of you already know, I participated in last week's Cure Autism Now walk. If you haven't yet received a thank-you for your contribution, I'm working on it, I promise! In the meantime, thank you so much for your support.

The walk was somewhat overwhelming. The Boy stayed home with his dad, because it was a madhouse, so I had the opportunity to explore, network and troll the resource fair at my leisure. This was both a good and bad thing.

First the good: Joy was definitely the predominant mood at the event. Because so little is known about autism, it's easy to feel helpless when faced with the diagnosis. The walkers (me included) clearly felt a lift just from having the chance to *do* something about it. Everyone was energized and upbeat, and many (me included) were proudly sporting t-shirts featuring pictures of the kids who had inspired them to walk.

More good: There were a lot of autistic kids there. More than I've ever seen in any one place before. And (barring the occassional meltdown or temper tantrum, to be expected in any large crowd of kids) they were having a great time. Most of the exhibitors at the information fair had bubble machines or other kid-friendly entertainment, and most of the kids had an idea that all this to-do was for them.

Even better: Autism and the experience of raising a child with autism can be very isolating. It's rare for me to be in a crowd of families and not feel somehow separate from them. It's rarer still to be in a group of parents of autistic kids and get to talk about something besides diagnosis and treatment options. At the walk, I felt connected to every family in the crowd, and I spoke to people about gymnastics classes and toys and summer camps and things that parents of "neurotypical" kids talk about all the time. And I didn't have to qualify or explain anything.

And the opposite of good: TMI, aka information overload. And beyond. I didn't know that so many types of therapy even existed, much less were available in the greater Atlanta area. All these options tend to make me question whether we're doing the right thing for The Boy, wonder if there are other treatments we should be pursuing, and generally wallow in self-doubt.

On top of this, I had the second of two meetings in one week with Ubermom (see "When Supermoms Have Autistic Kids" below). I'm not going into a lot of detail here, because just re-hashing it makes me crazy. But I have to wonder: When the hell did she have time in the 3 years since her son was born to find out every single thing about autism, investigate all the treatment and schooling options in the area, and meet every local professional associated with treating autism? Not to mention raise her other kid. OK, I'm exaggerating. But not by much.

I came to the conclusion that I have to figure out a way to let the anxiety roll off my back when I'm around her, because she's just too good a source of information to avoid. I also realized that, like the rest of us, she's scared to death for her kid, and this is how she deals with it. That doesn't make me any more eager to set up a playdate with her, but it does make me feel a little less hostile toward her. (At least, when she's not telling me to watch the TV interview with her about her kid.)

Whew. And I haven't even added any new Boy stories or therapy updates. I have them, and I'll put them up soon. Along with a few pictures (!) taken by The Boy himself.

Getting What You Pay For

2007-05-07T20:35:00.000-04:00

Written in all capital letters at the bottom of a recent speech therapy progress note:
"He did not stop talking the entire session."

Substitute "weekend" for "session," and it's a perfect description of my last three days.

Say What?

2007-05-07T20:31:00.000-04:00

At some point in my life, it became completely normal to say, "Yes, the chicken is wearing polka dots," in the course of everyday, sober conversation.

With a Moo Here...

2007-05-07T20:23:00.000-04:00

Grandma S bought The Boy these really neat flashcards from the gift shop at our local children's museum. They're supposed to teach manners, but they're great for working with The Boy on social situations.

For example, one cards reads: What do you say when someone gives you a gift?
The other side says (of course): You say, "Thank you very much!"
The pictures show cute cartoon pigs acting out these situations.
To make these into a game for The Boy, I photocopied one side of a card, and presented it with three options for an answer.

Me: "What do you say when someone gives you a gift?"
[Long pause while The Boy studies the pigs in action.]
The Boy: "Oink."

Good for the Gosling, Good for the Goose

2007-04-23T19:51:00.000-04:00

The grown-ups' dinner tonight included grilled asparagus, while The Boy's featured a side of green beans. (Or, as we are required to call them, frijoles verdes.) I asked The Boy to eat a piece of green bean. He picked it up, looked at me and put it down. Then he reached over to the plate of asparagus, snagged a piece and put it on my plate. He wouldn't pick up his green bean again until I had a bite of asparagus.

I could tell by the look on his face that if he'd had the words, he would have said, "If I have to eat the green stuff, so do you."

Going on a Guilt Trip

2007-04-20T10:51:00.000-04:00

Whew! It's been way too long since I updated. We've had a lot of visits from family recently, and that's one reason. Another is that I started working this week. It's a 10-hour/week job, and has nothing to do with autism, which is a very refreshing change. And I work in the middle of the day, so for the most part, it won't affect how much The Boy sees me.

As I found out, however, that doesn't mean it won't affect him in some way:

For the first two days I worked this week (I went in one extra time for paperwork stuff), Dad took The Boy to school. He was very, very vocal about not wanting to go to school, and he was reportedly very clingy at drop-off (The Boy, not Dad). We've hypothesized several reasons why this might be, including the departure of his best friend, and two weeks in a row of saying good-bye to grandparents. I'm sure these things have at least a little to do with his school anxiety.

The third day I worked, I took him to school before I went in. His class was in another room watching a presentation, and it threw him for a little bit of a loop, so I stayed for a few minutes. Ms. G asked me why I was wearing make-up and "all dressed up," so I told her about work. When The Boy's class went back to their room, I went in, got him settled, and prepared to leave. The Boy began to cry.

As I walked out, Ms. G asked The Boy to help her get the breakfast cart, and they started walking down the hall in the opposite direction. As soon as The Boy realized I wasn't right behind them, he melted down. My last view of him was reaching over Ms. G's shoulder toward me, crying, "Mommy, don't go to work! No work!"

Oy vey.

P.S. I waited around the corner for a minute, and he did calm down as soon as I was out of sight. Drop-off this morning was much better too. But if they awarded degrees for guilt-tripping, he'd already have a PhD.

My Very Best Parenting Moment So Far

2007-04-05T21:22:00.000-04:00

"Spring Break" is exactly the opposite of that when you are a parent whose child usually goes to school 5 days a week. It doesn't leave a lot of time to share stories, but I had to make time for this one:

About a week ago, The Boy was playing with his pretend laptop, leaning on the seat of a living room chair. As he played, the chair slid across the room and knocked a nearby bulletin board off the wall. I walked over, asked if he was OK, and started picking up the bulletin board and the stuff that had fallen off of it. It's a metal board, and it had dented a bit.

I think I said something like, "Oh [Boy], it's all dented." I know I didn't yell. I moved the chair over to pick up more stuff without realizing how close The Boy was to the chair, and accidentally knocked him over. The Boy became absolutely, unequivocally furious with me. He cried and screamed, and walked away from me when I tried to pick him up. He clearly thought that I had pushed him over because I was angry about the bulletin board. The initial fuss escalated into a tantrum fed by the chaos of dinner preparation, and went on for at least 20 minutes.

After all the usual comforting measures failed, the Boy's dad and I eventually decided to ignore the tantrum in favor of getting dinner on the table. When all was ready, I turned to the still-screaming Boy and said, "Please go wash your hands for dinner."

(Author's Note: At this point, it is essential to remember that The Boy has only just started to have anything resembling a conversation, and that "the diagnosis" usually means difficulty understanding social conventions such as apologies.)

The Boy glared at me, and shouted, "No! I want to go upstairs and lie down!" He then stomped his little self upstairs to his bedroom and slammed the door. His dad and I looked at one another, torn between awe and amusement: Awe at The Boy's newfound ability to express emotion verbally, and amusement at the fact that our toddler suddenly seemed to have become a teenager.

We sat down to eat. The Boy spent the next 10 minutes creeping downstairs step by step, eventually coming to rest on a step from which he could "spy" on us while sniffling loudly. Daddy went over, picked up The Boy, handed him a chicken nugget and sat him on his lap. When told he had to sit in his own chair to finish dinner, The Boy insisted on moving the chair next to Daddy. (I was clearly being punished.) After a few more nuggets, with a fuller tummy, The Boy looked at me for a minute and then said, "I want a hug." It was an immediately recognizable initiation of an apology.

We thought we were awed before. I think a full minute went by with the two of us staring at one another with our mouths open. The Boy insistently repeated himself, and of course, got two huge hugs.

Later that night, I was putting The Boy to bed. During our post-story snuggle, I said, "I'm sorry we had a fight." When he began to whimper, I quickly added, "But it's over now, and I love you no matter what." He was quiet for a moment, and then said, "I love you so much, Mommy." I still tear up when I think about it.

We're going to start building a garage for his Porsche any day now.

Achieving Our Aims

2007-03-27T10:31:00.000-04:00

When The Boy became toilet-trained (cue the angels' chorus), I was so thrilled to be done with diapers that I didn't care if he peed upside down or standing on one leg. As we encounter different sizes and shapes of toilets throughout the metro area (and trust me, we've seen them all), I've become aware of certain, ahem, procedural requirements.

At the first school The Boy attended, the bathrooms were communal. So as his peers began to toilet-train, I noticed that the most popular method for beginning standers was the "lean." Picture a toddler being patted down by the cops, but with hips pointed forward and hands on a raised toilet seat, and you have the general idea. This being my only frame of reference for peeing while standing, it's what I taught The Boy.

The drawback to the lean quickly became apparent: The hands are propping up the toddler, and so are unavailable to aim. When the toilet is not toddler-sized, the results can be very messy. This is how and why I found myself standing in a(n otherwise empty) public men's room (because, of course, The Boy will no longer enter the women's room) telling my child to "hold your penis and point." I expect to be arrested any day now.

Since The Boy does better with demonstration than verbal instruction, and I am most definitely not equipped to demonstrate, progress was slow. Then, last night before bed, he got the hang of it. As with all his accomplishments, I made a big deal out of it, cheering, getting a "candy prize," and alerting Daddy ("Daddy, I aimed!!").

This morning, when The Boy came into our room, he announced his arrival with, "I aimed!" I feel sure the entire school will know by lunchtime.

A Humble Request

2007-03-22T13:27:00.000-04:00

To all concerned and caring friends and family:

I appreciate how much you want to help us through the especially difficult parts of raising The Boy, and coping with his diagnosis. I know that all your efforts come from a place of love and concern, and are grateful for your presence in our lives. I welcome your support.

For our family, the most effective support is asking how we're doing, applauding The Boy's accomplishments, and letting us know (loudly and clearly) that you believe in our efforts and choices on The Boy's behalf (if you do). These actions make us feel loved and strong.

Please choose one of these actions, or something similar, to express your concern, rather than forwarding us new information, articles, interviews, etc. regarding autism. While we do try to stay informed, we are constantly inundated with this type of media, and it's overwhelming.

I can't speak for The Boy's dad, but it also makes me feel as though the first thing everyone thinks of when they think of my son is his diagnosis, rather than his beauty and personality. This may be true for some of you, but I'd prefer not to be reminded of it regularly. I struggle with it on a daily basis as it is.

Thank you all so much for your understanding and continued support.

The Highest Highs

2007-03-22T13:15:00.000-04:00

The Boy continues to expand his pretend play and conversational skills on a daily basis. It's wonderful to watch, not to mention hilarious. According to Julie, in their last therapy session the daddy of her doll house family spent his day on the potty, checking his e-mail (a completely spontaneous action from The Boy) and making toast. My husband is steadfastly ignoring the implications of this scenario. The Boy is also reaching out to other kids, with and without prompting, and even asking them to do certain things during play.

All of these new developments illustrate one of the most beautiful aspects of our situation: While it's very hard to realize that these things don't come naturally to The Boy, the smallest developments bring so much joy that we might not experience without the diagnosis:

Several days ago, I asked him to park his toy vacuum underneath the hook that holds his fire chief helmet (a new acquisition). After looking around the room, he asked "Where's the fire helmet?" This simple question, asked spontaneously and appropriately, had me walking on air for days. Previously, he'd have just said "I need help," and I'd have had to ask questions until I figured out what kind of help he wanted. It was an amazing moment for us.

Similarly, in December, The Boy's school held a "holiday" (i.e. Christmas) pageant. His class sang "O Christmas Tree" dressed as Christmas trees. (I decorated The Boy's with Stars of David and menorahs.) One little girl in his class knows German, so she sang a solo verse of "O Tannenbaum." At least, it was intended to be a solo. The Boy had heard it so much during rehearsal that he memorized it in German, and sang it with her. At the Thanksgiving show, I had to sit on the steps to the stage so he would stay with his class. By December, he was standing with his class, singing his heart out and grinning the whole time. I cried from the minute his class hit the stage. I think I can safely say that no one at that pageant enjoyed it as much as I did, except maybe The Boy's dad and grandparents.

Of course, there are still many times when I curse the existence of autism and its presence in our lives. I hate that ordinary things can be so difficult for The Boy (and his parents). Yet one developing school of thought, particularly popular among adults with this diagnosis, is that autism is not a disease that requires a cure. Instead, it's a way of being that is an inseparable part of who the individual with autism is, and should be accepted as such. Even when I wish things were easier for our family, I wouldn't change one iota of my son's sweet, funny personality.

So I try to file away the highs (because I have to file everything), the intense moments of joy we find in the smallest accomplishments, and pull them out on particularly difficult days. And I also try to remember to thank The Boy for showing me how to celebrate the seemingly mundane details of everyday life.

Grandma Came to Town

2007-03-19T13:21:00.000-04:00

...and so I was busy shopping, lunching and planning activities for The Boy all last week. Recent developments include: the first IEP (individualized education plan) with public school personnel, new songs and games, and spontaneous basic conversations.

I'll provide more information later (because I'm going to squeeze in a catnap), but here are some of the details.

The IEP turned out to be much less painful than I had feared. Usually, these meetings are a recitation of all The Boy's weaknesses and delays (oh-so-tactfully called "challenges" in the documentation). However, the administrator doing the IEP had last observed The Boy in January, and Julie and Center staff were all able to say how much progress he's made since then. And it was a lot. Even the administrator was surprised :)
Our newest song is "The Animal Fair." The Boy sings it all, including sound effects:
I went to the animal fair (boom, boom)
The birds and the bees (beasts?) were there (boom, boom)
The big baboon by the light of the moon
Was combing his ginger hair (Here, The Boy gestures appropriately.)
The monkey fell out of the bunk (boom, boom)
And slid down the elephant's trunk (wheeee!)
The elephant sneezed (aahh-CHOO!)
And fell to his knees
But what became of the monkey, monkey, monkey, hmmmmm?

This is alternated with "The Months of the Year." In Spanish.
Grandma S and I discovered that becoming the goose in Duck, Duck, Goose results in giggles so uncontrollable that they lead to hiccups. Later, he played a round with his dad and me, in which he overcame his giggles enough to run. And run and run. Until grabbed and tickled.
On the phone...
Grandpa A: Hello Mr. [The Boy]!
Boy: Hello Mr. Grandpa A!
Grandpa A (in a funny voice): Franklin rides a bike!
Boy (imitating funny voice, giggling): Franklin goes to school!
[This is an in-joke for the two of them]
Grandpa A: How are you?
Boy: I'm fine. How are you?
Grandpa A: Good! Are you having fun with Grandma?
Boy: Yeah.
Grandpa A: Is school good?
Boy: Yeah. Love you. Bye.

It's a real, honest-to-goodness conversation. I'm sure it'll be ages until they show up on demand, but he can do it!!
The Boy also refined his coloring book skills (filling in whole sections) this week, and asked his best buddy [called "Buddy" from here on out] direct, unprompted questions during play. ("Buddy, come blow bubbles!")

As we've been slowly discovering, the more we challenge The Boy, the more he strives to meet the challenge (after initial token protest, of course). Would that we all responded that way.

No Stinkin' Naps, Part II

2007-03-11T09:59:00.000-04:00

Yesterday afternoon, The Boy told us that he wanted to put on PJs and take a nap. Ever hopeful, we both capitulated to the demand to put on our PJs and "snuggle in Mommy and Daddy's bed." The Boy lay down between us, and we pretended to be asleep.

After playing with each of our faces in turn, he began to recite Dr. Seuss's Mr. Brown Can Moo, Can You?, that day's Barnes & Noble story-time feature. Complete with the story-teller's comments on the text. That was followed by numerous repetitions of "[Boy] the Boy," (a song I made up to the tune of "John the Rabbit," learned in an early Music Together class).

Finally, The Boy's dad calmly said, "[Boy], it's rest time. We're being quiet now."

At which point, The Boy started the song over in a stage whisper.

No one took a nap.

A Life of Her Own

2007-03-07T14:13:00.000-05:00

Speaking of things to celebrate: I got a part-time job in my field! In April, I'll be working 10 hours a week doing group and individual counseling with domestic violence survivors.

Therapy Update Ia

2007-03-07T14:04:00.000-05:00

I had intended to do therapy progress updates once a month, but this one was too good to pass up. Julie took the time to call on Monday afternoon to tell me that The Boy had had his best session ever that day. She's almost as excited as I am.

During their hour session, she logged:

Six unprompted, conversationally appropriate full sentences
A 90 percent accurate response rate for "who" questions (up from 40 percent last session)
and regular use of "I don't want to..." instead of whining/screaming and "No...!"

We could have told her about "I don't want to," since he spent all weekend telling us everything he didn't want to do. Who thought we'd be celebrating that?

Quote of the Lifetime

2007-03-05T14:15:00.000-05:00

From the spine of a back issue of Real Simple magazine:

"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us." --Joseph Campbell

Like Smart-Ass Father...

2007-03-05T14:07:00.000-05:00

Sunday afternoon found The Boy and his dad side-by-side in a big recliner. Dad was doing work, and listening to internet radio. When I came into the room, they were both bobbing their heads to the music, and The Boy was moving his toes back and forth in rhythm as well.

I said, "I think I'm going out for a while," and paused to take in the scene. My smart-ass husband replied, "Do you want a parade?" The Boy punctuated with, "Yeah!"

I looked at them and said, "It's like living with Statler and Waldorf." Dad grinned at his son and asked, "Do you want to be Statler or Waldorf?"

"Waldorf," replied The Boy, absolutely deadpan.

Around the World

2007-02-28T09:40:00.000-05:00

[E]veryone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that’s where I was supposed to go. That’s what I had planned.'
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
--Emily Perl Kingsley

The ever-resourceful Julie sent me the text of the original Welcome to Holland essay that my friend used to describe the experience of parenthood. The essay is actually about parenting a child with a disability, and it is a tear-jerker. She goes on to describe how if you mourn Italy your whole life, you'll never see the beauty of Holland. (I used Sweden in my version.)

Though I appreciate the original text and its message, the Italy to Sweden/Holland to Uzbekistan journey is a better metaphor for my experience:

Italy = preparing to be a parent before The Boy's birth
Sweden/Holland = The Boy's first 3 years, so very different from what we expected
Uzbekistan = the diagnosis and learning to live with it daily

In her essay, Kingsley points out that Holland may not be what she expected, but it's not full of pestilence and filth. It's just beautiful in a different way from Italy. I've never been to the actual Uzbekistan, so I can't speak to its beauty or lack thereof. What I do know is that Eastern Europe feels much more foreign to most U.S.-born folks than Western Europe. And that the former SSRs are all relatively new at being countries.

There are certainly lovely and amazing moments each day with The Boy. But there is nothing natural, comfortable or familiar about hearing the word "autism" in connection with my child. It's foreign.

Right now it's anyone's guess whether Uzbekistan and its fellow former SSRs will be able to remain stable, peaceful countries over the years. I guess that someday, I'll be more at peace with describing my child as autistic, or myself as "parent of an autistic child."

But I started with the Kingsley quote for a reason:
No matter how much peace I find or how much I enjoy The Boy (which I do), there will always be at least a little bit of anger and sadness that my trip was rerouted. (After all, I packed all the wrong clothes.)

For all you relatives out there (hi mom and dad), it's OK to for you to be angry and sad too. It's even OK for you to tell me about it (sometimes). Mourn the loss of Italy. But don't let it ruin the trip we're all on. I've got a feeling that The Boy has plans for us all to visit a few more countries before we're through.

*If anyone wants the full text of Kingsley's essay, let me know. I'll e-mail it to you.

Therapy Update I

2007-02-24T21:16:00.000-05:00

One of my intentions for this space is to provide updates on The Boy's progress in therapy. He receives both speech and occupational therapy. For reasons to be discussed in the future, this is a speech therapy update only.

Current Goals
1) The Boy will engage with therapist by giving a direction or making a request with 80% accuracy over 3 data sessions.
2) The Boy will follow 1-2 step directions with 80% accuracy over 3 data sessions.
3) The Boy will answer "who," "what happened," "what do we need," "what is that used for," and "where" questions with 80% accuracy.
4) The Boy will use descriptive words related to a toy or self ("He is cold" or "I am hungry") with 80% accuracy.
5) The Boy will ask a question during floor time play with 70% accuracy over 3 data sessions.
Other long term goals include:
1) Conversing with teachers and peers by asking questions. (Such as, "Hi, how are you?", "Where are you going?", or "Do you want to play with me?")2) Participating in pretend play with peers inside and outside the classroom.
3) Following a command related to verbalizing. Example: A teacher instructing The Boy to ask a friend, "What do you want for snack?" or "Do you want to sit with me?"
4) Following through with directions, such as "Go get your coat on and line up at the door."

Julie writes me progress updates in a notebook we leave at school. The following are excerpts from her notes throughout the month of February. When the text says "I," it refers to Julie.
February 5
The Boy independently and spontaneously: asks "I need help," asks for specific games ("I want to play with the stickers."), gives simple directions during play. I am incorporating pretend play during every session with my small plastic animals. The Boy tends to echo my phrases but is beginning to elaborate on some of the themes.

February 7
I continue to encourage The Boy to invite me into play with him. If he wants to assemble my train set, he has to ask if I want to play with the trains. He has to give me directions related to setting up the tracks. He likes to play out the same scenario every session, so I continue to try to be "playfully obstructive" with the trains.
-a snake wants to drive the train
-a tree falls on the tracks
-a bear falls asleep, and gets angry when the train comes by.
Lately, he has been handing me the trees or bears, almost encouraging me to create a problem/solution scenario.

February 12
The Boy has to ask for [a] snack and then answer multiple questions before he can actually eat the snack. After several successful trials, The Boy said, "Miss Julie, I need a cookie please." I asked, "Where should I put it?" He said, "Please put the cookie in my hand." I also brought a dollhouse with a mom, dad and baby.... We worked on function of objects and answering "what happened."

February 14
I am also trying to shape "no animal game" to "I don't want to play the animal game."

February 21
The Boy greeted me, saw the house, and said, "I want to play with the house." He directed me to take off my raincoat before we started playing. Some of the scripts that I've modeled are coming out when Gabriel role plays the mom and the dad.... Improvement noted with answering "who" questions!

End therapy notes

So that's a general idea of what we're working toward, and how we get there. He's following multi-step directions at home very well, and increasingly using descriptives for himself (hungry, thirsty, tired, happy, etc). As the anecdotes below indicate, his pronoun usage has improved dramatically over the past month, and spontaneous speech (such as observations about his environment) is on the rise. Verbal interaction with peers is our next hurdle.

Family and friends: Please feel free to use the comment section or the phone to ask questions!

Stories from the 'Stan

2007-02-24T20:38:00.000-05:00

The delay in posting is due to a series of nasty illnesses that cycled through the whole family. I'll spare everyone the details. Suffice it to say, it SUCKS to be Mommy when you're sick. To catch everyone up, here are a few recent anecdotes in no particular order.

Pronouns
Pronouns are problematic for The Boy. If you think about it, you can see why. Other people refer to The Boy as "you," but he's supposed to call himself "I." On the other hand, I call myself "I," but encourage The Boy to call me "you." He is catching on, slowly but surely. The other piece of background you need for this story is that when I put him to bed, I tell him, "You are the sweetest boy in the whole, wide,"... and then he chimes in with "world."

A few days ago, we all went to our local grocery store to get the heck out of the house after our long quarantine. The Boy was so excited to be out that he could hardly contain himself. He sang and danced. Literally. In the checkout line, he turned to the people behind us and proudly announced, "I am the sweetest boy in the whole, wide world!"

Kisses
On Presidents' Day, Julie, our speech therapist, came to the house, since school was closed. She usually arrives with cookies, which The Boy eagerly anticipates. This time, she also brought a handful of Hershey's kisses. For Valentine's Day, he had a special little pail that held candy kisses, so he knows all about this magical food.

I brought out the pail, to give him and Julie something else to work with. When she handed him a kiss, he unwrapped it and put it in the pail. Then, she held up the baggie with the candy and asked him how many he wanted. He didn't answer, but stared intently at the bag. So she asked again.

He stared for another minute, and then answered, "I want ten." Because, of course, he had been counting how many were in the baggie, so he could ask for all of them.

Me Llamo El Nino
One of The Boy's favorite toys is a play laptop computer, on which there is a series of games that teaches Spanish vocabulary. We knew that he had learned all the words, because we can hear the computer tell him how many he gets right.

Last week, he turned to me at dinner and said, "Mommy, I want some more queso, please."

When Supermoms Have Autistic Kids

2007-02-19T20:20:00.000-05:00

Today, The Boy and I took advantage of our local weather's arbitrary nature to go to the park. As I watched The Boy cheerfully risk death on the monkey bars, I overheard one mother explain to another that her son is autistic. When I recognized his name, I asked her if she's the Center mom who brought the pamphlets about gymnastics classes for autistic kids (in which I subsequently enrolled The Boy). Indeed she is, and we started chatting.

Within 5 minutes, she told me how many hours of five different kinds of therapy her son receives each week; about her program-altering legal fight with the city school board; and her fabulous but exclusive OT.

It was like some twisted version of the stereotypical conversations upper-crusty parents supposedly have about their five-year-olds' extracurricular activities: "Brittney's in soccer and ballet and gymnastics this semester, but I think next year we'll drop the soccer for Japanese lessons. I've heard that all the best schools want them bilingual before first grade."

To be fair, I asked for some of this information, and I know it's exciting to feel that all the crap you've gone through can help someone else. Ultimately, however, I wound up feeling completely freaked out about all the stuff we're not doing with The Boy.

Our wonderful speech therapist and my practical (and equally wonderful) husband addressed the freak-out very well, and I feel much better now. But how sick is it when your kid's therapy becomes a means of competition with other parents?

Next, we'll be having these conversations (e.g., brag-fests) about pediatric psychotherapy: "Well, we're thinking about a behavioral approach right now, but all the best psychiatric wards want them to have at least a year of Jungian therapy before they're committed."

Ophidiophobia

2007-02-19T20:14:00.000-05:00

How much do I love my son? Enough to spend 20 minutes in a room full of snakes and lizards.

The Boy: Big snake! It moved!
Me (shivering with barely repressed revulsion): Wow, that big snake sure is cool!

What have we learned?
1) Before going to your local natural history museum, make sure the featured exhibit is not something you fear and loathe. Fish are good. Fossils are better.
2) Before going to your local natural history museum, consider the possibility that a school holiday may result in crowds of 9- and 10-year-old boys pretending to drop snakes down one another's shirt collars.

We Don't Need No Stinkin' Naps

2007-02-16T17:03:00.000-05:00

The Boy stayed home today, following what The Center nurse termed a "large vomiting episode." (His classmates announced that he had "throwed up.") The moderately dreaded three-day-weekend is now a four-day-weekend. Sigh. While a delightful, lovable child, the following exchange should give you some idea of what this weekend will be like:

The Boy: I wanna go upstairs and put on PJs
Me: Are you tired? Do you want to take a nap?
The Boy: Yeah.

We go upstairs.
The Boy: I want Mommy to put on PJs.
As I humor the sick child and change into PJs, he dances around with his pants around his ankles and his shirt half over his head, yelling, "I need help!"

The Boy: I want to read "Babar's Birthday Surprise."
We read the book for the third time today. He closes the book two pages from the end.
The Boy: I want to snuggle. (Insert jaw-splitting yawn here.)
I turn the light out, snuggle up and allow a tiny ray of hope to surface that a nap may miraculously occur. Four more yawns and about 15 minutes later, I'm about half-asleep. The Boy reaches over and closes my mouth. I'm not asleep anymore.

The Boy slides out of bed and makes for the door.
Me: [Boy], where are you going?
The Boy: I want to get the computer.
Me: You can get your computer at 4:00. Let's rest some more.
The Boy (screaming): No!
A low-level tantrum occurs, punctuated by yawns and whining. No tears, just pathetic fatigue. Perhaps a nap?
The Boy (grinning, leaning into my face): Hi Mommy!
Whereupon the exhausted, ill child giggles like a maniac, leaps up, and begins bouncing on the bed.

If we put him on a wheel like a hamster, maybe he could somehow serve as an alternative energy source.

String Me Up, String Me Down

2007-02-15T10:33:00.000-05:00

For those who don't know, The Boy goes to school at The Center, where traditionally developing and nontraditionally developing children are in class together. The teachers work very well with all types of kids, and The Boy has both peers and models to play with.

When I dropped him off this morning, about five kids were already in the room, stringing beads with Ms. G (lead teacher). The Boy said good morning in response to Ms. G (with prompting, we're still working on that, especially when coming into a busy room). She invited him to come make a necklace with the other children.

OK. I know he can string beads. We've done it at home, and he does it in OT (yay fine motor skills). He loves to make "neck-o-laces." For whatever reason, though, he ignored the table of beads and went straight to the computer in the back.

It took every ounce of willpower I have to keep from grabbing his hand and leading him back to the bead table. From the minute he bypassed the beads, all I could think about was that he wasn't being social, he was isolating himself, he was obsessing about the computer again, and on and on. I had to make myself leave before I redirected him.

Logically, I know that:
- He has friends he interacts with at school.
- It often takes him a few minutes to adjust to being in a group.
- Ms. G likely gave him five minutes to come over, and then went to get him.
- He might just be tired of beads. We've strung a lot of beads lately.

But it took me a good 10 minutes of self-talk in the car to remind myself of all this. I don't mind that he may never be the kind of kid who runs right over to a big group to play.

What I mind is the leap in the pit of my stomach every time something the slightest bit not "normal" happens. And I resent losing 10 minutes of my life three or four times a day to talking myself off of the ledge.

Anyone know how to skip the panic and go straight to the logic? Anyone? Beuller?

Too Sexy for My Undies

2007-02-14T20:54:00.000-05:00

We dressed for Valentine's Day today, from the inside out. The hearts say "Love Bug" on them. This picture got posted for two reasons: 1) Soooo cute. 2) Payback for one or two of the zillion nights he wakes up at 2 a.m. and drags me into his bed to sleep.

Reaping What You Sow

2007-02-13T21:50:00.000-05:00

The Boy (sitting in the tub watching dad relieve himself):
"Good peeing! I'm so proud of you!"