Birthday Blues

We were in church the other day and at our church, the kids stay in the sanctuary for the first 15 minutes or so before they go to "Sunday school".  This particular day with no forewarning the preacher announces that it's so-and-so's birthday and that the whole congregation was to sing "Happy Birthday" right then.  Not missing a beat, my child blurts out in the silent space that was upon us, "Oh no!". Imagine the preacher all happy announcing "so-and-so's birthday", and out in the back of the crowd was a tiny, but loud voice responding with "Oh No!"  That was my lovely kid...

Birthdays have always been a struggle for Calder.  Until recently birthdays caused meltdowns, freakouts, shutting down and lots of anxiety.  For as many birthday parties I can remember, I have been juggling a very disregulated kid, (usually off in the corner of the room), with encouraging participation.  For many years he could not get close at all to the group, wasn't interested in any of the food, including the cake.  We always left as soon as it was polite enough to do so, and always missed the games, much to Calder's relief.  And his most abhorred birthday tradition?  The happy birthday song.  He hates it.  He covers up his ears every time.

In  the autism evaluation he had when he was 3, ultimately acquiring an autism diagnosis, they simulated, of all things..... a birthday party.  This represented a social activity, being used to observe his reaction and level of participation.  Since there is no test for autism, it is based solely on observation as well as parent and doctor/therapist report.  Needless to say, Calder failed his Birthday Party.

What is it about birthday parties?  He loves his friends, but sure does hate their birthdays.  He's definitely more mature and regulated now, but still each time the birthday song is imminent, he cringes and covers his ears.

Calder and Cisco

Yesterday Calder rode a horse for the first time and quite unexpectedly.  My intention was just to drive out to the ranch and at best fill out some paperwork that I was not able to print out at home.  I was told there were spots left when usually there is a waiting list so I rushed out there to sign and seal the deal.  I didn't explain much to Calder except that we were going to meet a guy named Carlos, oh and that he had a ranch, oh and that there may be some horses there.  That was it.

Carlos was as smooth as butter.  While he was getting to know Calder I noticed that he was quietly asking one of the volunteers to saddle up the enormous 16 hand sorrel horse that was just on the other side of the tack shed.  Little by little, ole Cisco, got bridled and saddled up.  Carlos produced a kid sized riding helmet and asked Calder if he thought it would fit.  We talked about how much it is like his bike helmet and he was eager to try it on.  Going out there, my key concern was that they go at the kids pace, knowing that Calder surely would need time and space to warm up to a 1600 lb. beast.  Maybe for the first few weeks Calder could pet the horse and brush the horse, yadda yadda yadda.

Within 20 minutes or so Calder was in the saddle, on the horse alone, being led by several volunteers.  All of this being orchestrated by Carlos himself, weaving in and out, standing with me, allowing space, checking in and quietly directing.

Im not here to go on and on about how fantastic Carlos is with horses and kids.  No, I want to share this single question Calder asked me over and over that first day, and again today when I took him back out for a ride:

 "Hey Mom, how are YOU doing?"  My 6 1/2 year old has never asked me that before.
It caught me off guard. I was in a secret wonderful kind of shock, just to be seeing my guy on the horse. How am I doing? He was totally relaxed and proud and confident up there in the saddle, having genuine back and forth conversation with his newfound team. "Mom, how are YOU doing?" Turning around so that he could look at me directly and hear my answer.

There is proven research that the rhythm of a horses walking cadence is beneficial to kids with autism.  I've read about how non-verbal kids talk while on the horse.  I've also read about how calming it is for the nervous system, benefitting a disregulated body; a body out of sync.  You don't have to convince me to try it.  You don't have to convince me that there is certain benefit, even for high functioning kids.  You don't have to convince me that feeling the power of such a large animal; sitting atop and seeing the world from a higher view, and being in control of that is nothing shy of marvelous for such a little kid.  You don't have to convince me that a friendship, even a love, can develop between horse and man (or woman, or kid....)  It seemed he grew up a little bit that day.

Our Disney World

I've thought a lot about what I will say when asked "Did Calder like Disney World"? The short answer is yes. But I have another answer...." Disney is the happiest, scariest place on earth".

"Where dreams come true". I've struggled with that one. Trying to find what that means to me, like a complicated bible passage, taking many years of study to glean out the true and simple meaning. Another one, "Let The Memories Begin" designed in the well manicured greenery as you walk into Magic Kingdom almost mocks me. What memory will we make today, oh boy. How about the 'foaming at the mouth' memory? But I'm getting ahead of myself. Yes, he got to meet his favorite characters, Woody and Buzz. He voluntarily waited in lines each day we were there to meet those guys. I believe this may have been his favorite thing. If it is true that kids with autism can not filter out all the background noise and stimulus, then what Calder accomplished at Disney is nothing short of amazing. Besides the loud bumping ramble of the crowds, the piped in music, the enormity of the place, the logistics, the sudden and loud parades and street parties, AND Mom and Dad asking 'what do you want to do?' And , and, and.....

I'm extremely proud of my guy. And a little bit sad. For him the fun comes at a cost . He takes it all in and when he can't take another minute, another decibel he retreats. He will shut down and he can no longer hear what you are saying. If it were up to him, just the unknowing would keep him from exploring and following his curiosity. The hour long line was so much of a hurdle, it didn't matter to him that something amazing awaited. Favorite characters aside, the unknowing was too strong. He kept saying he wanted to go back to the hotel. I would ask him why and he said "because they have elevators". Try explaining that to someone: he loves elevators more than rides. But I knew, if he could just get through the waiting and the unpredictability, that he would actually love it. And he did. But if we left it up to him, he just as well stay in the hotel. There is a fine line between taking things at his pace, and deciding what he can handle. I promised myself that I would not force him to do things. I thought that decision was going to be easy.

There were many happy moments for him. First, he had the constant attention of all four of his wonderful grandparents! Another thing is for sure, they never say no to kids at Disney. Reliably refreshing. He got to eat marshmallows for dinner one night. Magic. But the next morning after he ate his breakfast at the buffet he asked to eat marshmallows again. Some kind server went digging in the kitchen to unearth marshmallows for my kid. Double magic.

$10 balloons: two kids =$20. Little did we know we were also getting an insurance policy, and a disgruntled waiver. After one night Calder's $10 balloon went flat. It was replaced the next day gratis. When Calder then changed his mind about which balloon he wanted, the nice balloon man let him trade it out for another. These little moments were absolutely magic unfolding. It had nothing to do with rides...

The Countdown Jar

We have planned a trip to DisneyWorld. I've ordered everything free there is, as far as brochures, DVDs and maps. I've googled, Youtubed and surfed, looking for even more footage of the parks to show Calder. He's not overjoyed about it yet. He will get bright eyed when he sees a favorite character but mostly so far, suspicious is the word to describe his "enthusiasm". He avoids the Disneyworld videos I casually pop in the DVD player while he is in the room.... It's not that he isn't interested but rather it all must be just a bit incomprehensible. He doesn't like seeing people out of context: like a teacher or therapist we may run into at the grocery store for example. So can you imagine seeing the REAL Mickey Mouse after knowing him to only be a TV character? It's like hero and boogeyman all in one.

Today we received a homemade planning package from a friend. Inside is a countdown jar that you fill with candy. You then eat a candy each day until the jar is empty and you're off to Disneyworld. Knowing that he does not like candy, I asked him what was the yummiest food in the world and with huge eyes and overjoyed body language he tells me Hexagon crackers! This is an edamamme gluten free rice cracker. I don't really believe him. He eats these crackers every day. I would even say it is his number one staple. So I decided to give him some ideas. "Think of something really special: Ritz crackers, sugar cookies, chocolate chip cookies, Maw Maw's cookies". The light bulb went off over his head, he had found the answer. A food so very coveted, so very special and rare. Something so simple. He shouts out loud, "saltines!". I couldn't believe it, but it makes sense. When someone offers him a saltine I can feel like a pretty crummy mother, denying my kid gluten-y saltines. What kid begs and pleads for a saltine? Mine does. And I always give in, but nevertheless, it remains the holy grail of sacred snackdom.

So tomorrow we fill our treat jar with saltines. We'll count down the days. We'll prepare like no one else. We'll make Disneyworld as predictable as possible, as impossible as that sounds. Well watch the firework show at a comfortable quiet distance. We'll write down the order of transportation: first the car, then a monorail, perhaps a boat before we even arrive at the entrance. I've ruled out the Bose noise cancelling earphones. I've ruled out the handicapped parking. Is this crazy? Yes, it is. Will he have fun? Probably he will. Will it be too much? Will he have more anxiety than fun? Will he feel like a train wreck inside, filled with uncomfortable novelty? Maybe. Will the sheer awsomeness prevail over his fears? I explained to him that the characters don't talk, much to his relief. He doesn't want to be talked to or touched. I really do believe there is something there for everyone. And not all things are for everyone. He may like the hotel elevator best, who knows. We'll see.

38 words

It is often difficult to get details from my now 6 year old. Nearly every day I ask Calder "what did you do at school today" and every day he sort of struggles with that question. He may give me a partial answer and then rattle off the lines of his favorite Toy Story 2 scene. Oh right (I remember).... ask a concrete question. "Calder, did you have P.E. today? What did you draw in art? Did you learn a new song in music class?"

For his homework today, Calder had a list of 10 spelling words that he needed to write in 10 sentences. He got through this pretty painlessly except for his second sentence. "I am really up." The next 30 minutes were spent negotiating his way towards making that a better sentence. He lost every toy he was distracting himself with until he was laying on the couch really bumming. I decided to go over to him and ask why he was so reluctant to correct his sentence. I asked and asked and he mumbled on and on about something, saying "three pages of ten and one page of eight makes 38" so I asked him about 38. "Calder, if I go count the words you wrote on your homework sheet will it be 38 words?" He didn't answer me. I wondered as I often do, does he hear me at all? I go count his homework sentences. 38 words. I have no idea what to think of that. But I realized there is way more going on in his head than meets the eye.

I never did understand what the significance of 38 was or why he was able to write 10 sentences in 5 minutes then took over 30 minutes to erase one word. This also is a good example of how some conversations go around our house. You start off with a clear idea in mind of what you want to ask/tell Calder. He'll respond in his adorable non-sequitur way, you repeat yourself, the conversation takes a few spins, you repeat yourself again, it takes a nosedive and you find yourself standing there looking at each other.... except that Calder is not looking at you. He's in his own world. You decide that it's just fine to let him be there for now, that you were being really redundant anyway. You realize that there will be many other great conversation/exchanges to be had, another time.

Please, my Mommy wish these days is to just please eat a PB&J!  It would make school lunch so much better.  If my kid would eat a PB&J it would be easier (not to mention nutritious) to take a snack or a meal to go.  Right now our only sandwich is a gluten-free cheese sandwich.  Which, if he is eating right after it is cooked, is somewhat appetizing.  But after it has sat in a sealed container for 4 hours, it's kind of past its prime....


PB&J is our first goal at Food School.  Yes, in Santa Fe we are lucky enough to have such forward thinking therapy as Food School.  No really, it is a blessing.  But I'm stretching the truth a little.  His first food goal is not PB&J as I hoped it would be  but it is just PB.  No bread, no jelly, no layering, no 'to toast or not to toast'.  No jelly variations.....I realize after his first 3 Food School visits, that PB&J is going to have to remain on the back burner as a long term goal.  Right now, we are only looking at PB.


At Food School he and his therapist Julie, work on experiencing food.  Yes, for those of you who may be squirmish at applesauce-in-the-hair kind of therapy, Food School is not your thing....They experience food in ways you probably never thought of.  It is an approach for the sensory sensitive individual, which Calder is.  They tap food on their teeth, lick it, spit out 'rockets', crinkle it near their ear, smell etc.  Whatever the kid may do with their food the poor therapist has to do as well, to reinforce.  Playing with your food is a necessary developmental experience on the path to eating.  Some kids breeze right through it, some kids avoid it.  There is a timeline to eating food and the very last step is actually swallowing it.  So Calder's therapist helps him along that long road he must travel in order to, at the end hopefully, take a bite and swallow it without gagging.


Calder loves his therapist.  She is spectacular.  She builds 'Peanut Butter Gardens' for him.  A peanut butter garden is a spoonful of peanut butter on a white paper plate with a few broken pieces of graham cracker pieces standing up in it.  He loves the graham crackers, and when he eats one, he inadvertantly eats some residual peanut butter.  Don't get me wrong, he knows he's eating it.  He could sense a PB molecule...He eats a graham cracker bit and Julie makes over him, falls on the floor.  (Don't tell BC/BS).  This is great therapy!  Now he has officially 'eaten' peanut butter!  He loves making us all surprised.  I take a video on my phone for later.


Generalization is a whole other issue.  For Calder, as with many others with Autism, they may learn a new skill in one environment, but not be able to generalize it to other environments.  This means Calder is willing to eat peanut butter gardens in therapy, but not at home.  He has not eaten a peanut butter garden at home, even though I have made sure to present the exact same brand of PB and crackers as Julie does.  I have set it out many times, with no expectation and no pressure.  And I realize that this is just the beginning.  After he conquers and generalizes PB, then we start with jelly.....it's a long road ahead.

a boy, a xylophone, and courage

Our guy doesn't like crowds, especially crowds in echo-y places (like a school gym). An with that said, he doesn't like loud noises either. He has an aversion to touch. He used to not like it when people sang, and often still tells me not to sing. He can be described as shy, but I think that is changing. Sometimes he is shy but sometimes he is charming and outgoing. You kind of just never know. Sometimes he freaks out, sometimes he's smoother than butter. There doesn't seem to be any rhyme or reason to it and we are often surprised. Things that we think will be really hard for him he glides through. The things that we think are no big deal, can totally undo him.

Yesterday evening Calder had a Spring performance at his elementary school. He has been coming home for the past couple of weeks singing a lineup of wonderfully cute songs about respect, worms, cookies, You Are My Sunshine (in ASL!). I didn't realize this was in preparation of a kinder-2nd grade concert. He sang the songs alot around the house but never mentioned to me that it was for a performance that he needed to attend in the evening on a weekday. (Thursday at that, our busiest day of the week).

With that said, let me paint a picture for you: 45 minutes before the performance he wanted to cook pasta. He wouldn't let me cook it, he had to do it. I let him, in fostering his independance. But he is slower than me, relishing every single measurment and moving of the stool all over the kitchen to different cabinets and countertops. Rice pasta takes an unbelievable time to cook and so it wasn't ready in time to eat before the performance. Pasta leftovers are just too yucky for him nowadays. Too coagulated.... I got a little flustered.

Then he goes through this craft project pertaining to the song lineup. I realize this is a form of processing and organizing for him so I try to stay cool. First he takes out the letter stamps and inkpad and proceeds to stamp out all the titles to his songs he is going to be singing. After that, I try to get him to the door, but then he insists on cutting out all the titles and gluing them to a different sheet of paper, and then cutting THAT paper down to size! Keeping my cool. I don't want to stress him out with all my stress. It can be catching in our house.

Once at school, they seat the parents. We wait a half hour, then all of the kindergarden, 1st and 2nd grade kids come out and sit shoulder to shoulder on the bleachers facing all the parents. Calder sits there for a long time playing and laughing with the cute blonde sitting next to him that I have never seen him talk to before. I am already a proud parent and the performance hasn't even started.

Fast forward a few songs.... He is singing, watching the music teacher direct, doing all the hand movements that go with the music. He watches (mostly) the skits done by the older kids and THEN, after I don't think I can get any prouder, he stands up on cue and quietly walks on over to the soprano xylophone, sits down and picks up the mallets. Let me pause for a moment to tell you that it has been a dream of my husband's that our child play the marimba one day......

HE PLAYED THE XYLOPHONE!!! He kept great rhythm! Grant it, it was only one chord from what I could tell but who cares? Who thought to put him on the xylophone? Was it his idea, did his music teacher see his potential or interest? He was the only kindergardener (from what I could tell)on one of only 4 instruments. I am sure every parent was beaming with pride that night. But my beaming was not only from what I was seeing with my eyes and hearing with my ears. It also was in knowing what challenges and anxieties my particular child carries with him all the time wherever he goes. And it was in knowing that he overcame all those anxieties in a beautiful, perfect 45 minutes!

Never Say Never

When I was looking at pre-schools (doing my homework) around the time Calder was 2 or 3, I was visiting the private school Santa Fe School for the Arts and Sciences.  I had heard a great deal about this school from many other Moms.  I decided, at the schools request, to bring Calder so we could see if it was a good environment for him.  We had to go through a few sets of doors to get to the Dragonfly room, a mixed ages classroom of 3-5 year olds.  It was apparent from door one, that Calder was in no way interested in this environment, in fact he was kind of freaking out.  Now in hindsight, I realize he was fixated on the doors and could not go much past them.  As he was sitting in a foyer area, maybe taking off his shoes, I quickly grabbed a peek inside  the classroom in question.  What did I see?  All the little children being corralled from free play into a circle for circle time.  Immediately, I knew this was not for us.  I felt in my heart at the time, that there was no way anyone would be able to get Calder to sit in a circle.  That seems so long ago.  It amazes me how far we've come.  Now Calder is in Kindergarten and his day is full of circles....

Never say never.....

Now, taking a kid with autism to a Mardi Gras parade just seems crazy.  The statistic is 1 kid in every 110 has autism.   I wonder what the statistic is of kids with autism who go to carnival parades...one in about 5,000?  And what then would be the statistic of those kids who actually get through it with some level of enjoyment...one in 10,000?  What is the statistic of parents who can relax enough to enjoy it themselves?  Two in 20,000? Anyway, you see my point. 

Never say never....

Still though I'm not willing to dismiss it.  After all there was a time that I believed Calder would never sit in a circle.  I know a circle is very different than tens of thousands of people screaming "throw me something mister"  while plowing down whole families to get a cheap pair of plastic beads that were made in China. But,

Never say never...

All my life I imagined taking my future kids to Mardi Gras in New Orleans. I always thought it was such a fantastic time and wanted so badly to share this with my kid/s. We would skip school, fly down to New Orleans, be with family, go to parades, watch all the marching bands, stand on ladders and catch as many beads as we could, filling up our large brown paper grocery bag. Thats how it was for me.  If I ever go with my kids, I am sure it might look a lot different than when I was a kid.  I can't imagine it yet, without getting a cold sweat and increasing heart rate.  But Calder always suprises me.  He is always eager to hang out at the learning edge.  I've realized that if I say he can't do something, than it is I who is holding him back. So, I'll sit back and wait.  We'll bake a lot of king cakes.  I'll order beads and doubloons on-line and bide the time.   And I will never say never.

House of Cards

Not always do I feel like I do today.  But today I'm tired.  I told Calder this afternoon that being a Mom takes a lot of energy.  Maybe it's my age...maybe it's keeping up with the never ending energy of a 5 year old.  Maybe it is putting out an ever streaming line of little fires.  Each day.  Maybe it is the problem of getting my kid's attention, always it seems lately.  Maybe it is worrying about my child's future, next week and the college years.  Maybe it is being accountable to a little person instead of being able to make decisions about his well-being without him in the discussion.  Maybe it is the long days...the rigidity...the heavy burden that novel situations bring.  Now, take out your autism magnifying glass and look again.

Accompanying my child in his education is a 25 page living document.  IEP: individualized education plan.  Along with the parent/teacher conferences come the IEP meetings, and the addendum meetings.  Teaching teachers about autism.  Teaching teachers about different ways of learning and experiencing the world.  We're lucky this year, Calder has an extremely eager teacher.  Filling up the file cabinet, new folders are popping up everywhere...ASD....IEP.....Therapy.  Dealing with insurance companies.  Living a life so completely structured.  Balancing a house of cards.


Personal hygiene...can I rant about personal hygiene?  Wiping a tiny hiney comes with being a parent, but it doesn't stop there.   For a year we cleaned nearly every single B.M. out of cute little Gap size 4 underpants, sometimes 3 times a day, at restaurants, on road trips....  Let me tell you how much easier it would have been to keep him in diapers until age 5.  Crusty noses.  Have you ever seen a face and clothing of a kid who can not blow his nose?  We have a therapist come to the house 5 hours each week to help support Calder in Adaptive Skill Building.  He is beginning to teach Calder how to blow out of his nose. I've tried everything I know.   It's a big deal...

When Calder was little, most of my time was engaging him in 'floortime'.  Now that he is getting older I stand up in advocacy and try in every way to pave the way for successes.  Anytime something may arise which is new, we prepare him for it.  When he shuts down, we will write words instead of speak them.  There is a funky kind of flow in our house.  Somedays, saying 'good morning' causes a meltdown.  You just never know around here.  Sometimes it feels like a mine field.  Things as benign as the exclamation 'bingo!', can tear him apart.

When Calder was young, in late infancy,  I wanted so badly for him to acknowledge me, to look at me, giggle at some silly face I made: or just to give me a smile.  In a way, a smile was in my mind a huge acceptance.  I know. It may sound a little distorted or self-serving.  No infant should ever be expected to 'give back'.  I often didn't know what he needed, and was ineffective at soothing him.  Mostly, he just wanted to be left alone.  My Mommy genes cringed at not being able to cuddle, rock or sing to my colicy crying infant.

The secret, I suppose is to make sure to weave in some joy.  Thank God for the moments of joy.   We have many of them.  Those are the lifelines.  As Calder grows up, I'm discovering so much about him and what makes him tic.  A lot of times I don't relate, but I know it is there and I can accomodate him these things.  It is a different way of being, a different way of walking through this world.  The very things that can bring me grief in our daily activities, I will honor as his right.  His right to be different than others. His right to have an environment he can thrive and learn in.  I just pray that every day, I can be strong for him.  That I never falter, that I never fall.  That I am carried on by a force that is bigger than me.  'River, oh river running deep can you lift me up and carry me?'

just another body part?

While nursing my baby girl, we look into each other’s eyes for a long time. As I’m gazing into her eyes I feel something, a kind of melting….. a kind of evaporating…

The eyes seem to gaze into the center of things...they can see into the beginning of you: where you start. If the right person looks at you too long you can feel so very exposed. The eyes are intimate and personal. Is this ingrained in our biology or in our psychology? Do we need this trait for intimacy and survival?  And I ask myself what is it exactly about the eyes? Why couldn’t I look at her nose or her hair and get the same moving experience? The eye is just another body part, made of cells. Even though they often feel very deep, you really can’t see further than the retina. Perhaps it is the ability of seeing inside, literally, even if it is just a fraction.  Beyond the surface of a human are the secrets waiting underneith.

One telling autistic trait is the aversion of eye contact. I believe it is even written in the DSM IV criteria for an autism diagnosis. A University of London team studied 104 six- to ten-month-old babies, 54 of whom were at elevated risk of developing autism because they had an older brother or sister on the spectrum. The researchers used a sensor cap placed on the scalp to register brain activity while the babies viewed dynamic images of faces that switchd from looking at them to looking away from them, or vice versa.

This experimental laboratory test showed that most infants who did not go on to develop autism showed clear differences in brain activity when viewing images of a face looking toward them versus one looking away. By contrast, infants who did go on to develop autism tended to show little difference in brain activity when viewing the two types of shifting gazes.
Studies have shown that the human brain displays characteristic patterns of activity in response to eye contact with another person. This response appears to be critical for face-to-face social interactions. Research has also shown that older children with autism have atypical patterns of eye contact as well as atypical brain responses when making eye contact. "Researchers studying infants at risk for ASD are now able to show differences in brain function as early as six months of age,” says Autism Speaks Director for Environmental Science Alycia Halladay, Ph.D. -see footnote

In one of the books I have read written by someone living with autism the author couldn’t get over how us “neurotypicals” are so obsessed with eye contact. They described it as “just another body part” We ARE obsessed with eye contact, right? We have the expression “the eyes are the window to the soul”, which must sound utterly ridiculous to someone with autism. But there is something to it, because I can feel it. Why the eyes? What are they meant to do? Is their function beyond that of seeing things? If so, where does that leave people on the spectrum?

article exerpt from http://www.autismspeaks.org/science/science-news/infant-brain-activity-flags-autism-risk

Calder, meet Ray

Last night I found a note taped to our new upright piano which reads: "Grown ups should not play the piano". Lately, Calder has been bothered when Eric or I sit down to play the piano.
I've tried to reason with him. I've tried to explain to him that the piano is for everyone to enjoy, not just him. I've also tried to explain to him that his Dad played on this very piano when he was a kid just like Calder! None of this matters to him....you know, he's 5.
So I decided to tell him this morning,"you don't know about Ray Charles do you?". Not only was he a grown up, he DID play the piano, he SHOULD play the piano, and he was very good, at that! AND he was blind; his eyes were broken. No argument there, the guy was brilliant. Calder knows Ray Charles' music because we sometimes play it in the car.
So, even with the best evidence supporting my case, my 5 year old will still attempt to argue with me that grown ups should not play the piano. I will keep my Ray Charles nearby and play it as often as I need to in order to make my point.

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hugs are often hard

What I'm going to write about next upsets me a bit, only because I haven't figured out quite what to do about it.  We were recently visiting friends in Arizona and Calder got to visit with his friend Thackery who, like Calder is 5 years old.  They played together really well having a lot of fun together.   The second day of our visit Thackery fell and hurt himself, not too badly but enough to get Mom hugs.  While on her lap he says to her "I want my friend Calder ".  Calder was nearby and was able to hear this request/compliment.  He didn't respond so I repeated what Thackery said and tried to explain what to do.   Calder didn't respond in any way and in fact he resisted my attempts to encourage him.

Today after school his best buddy classmate gave him an unsolicited hug goodbye which in my thinking is a very sweet thing to do.  But Calder didn't like it one bit and recoiled.  I tried to get Calder to settle for a wave and "goodbye" to which he did begrudgingly with totally averted eye contact.

I'm not sure where to begin with this one. Do I teach him social expectations or do I support his wishes not to be touched?  I hate putting limits on him because he often surprises me.  I feel so bad for the kid on the receiving end ( or non-receiving as it may be...) because usually it is a dear friend and I can sense hurt in their eyes.  I want my kid to have friends and know how to show comfort to them when they are in need. 

Parents don't always know the answers right?  Sometimes there is a curveball thrown your way.  I wish I had some great explanation for Thackery but all I can say is that Calder does love you and you are very dear to him.  He remembers things about you that most kids will forget.  Maybe he just has different ways of showing it. I know as Calder gets older and better at organizing his thoughts, he will be able to explain more things and how he experiences them.

I do think the gentlest of touches can hurt him and that when he says that washing his hair hurts, he is actually experiencing a form of pain. I don't always know what 'normal' or 'typical' looks like.....maybe a lot of kids recoil ....but from their best of friends? I don't really ever see it, but maybe it's out there.

"blending in" is overrated

Sitting down in a hotel restaurant in Deming, NM we had no plans on being the strangest family in the place.  It all started with the kids menu.  What would Calder eat?  Oatmeal, banana, and yogurt...ok great, we're going to be just fine.  Until.....well the oatmeal is different than the kind at home.  Once Calder understands that, we're down to the yogurt and banana, still a pretty decent breakfast.   We ask (badger) the very young waitress for a banana which now we are told they don't have.  We decline the bowl of cut fruit assortment that Calder won't eat.  We're down to just the yogurt.  I warn him that it will be pink with bits of strawberry.  We strike a deal. We order our food and get the fruit cup for Elodie (easy).

When the meals come we see that the waitress didn't understand that the low-carb breakfast plate Eric ordered should not have potatoes and bread on it.  We sent the waitress and the carbs away to the kitchen.  She no sooner left when she returned with the enlightened notion that since Eric's plate was already cooked did he want the potatoes and bread anyway?  She had no idea what "low-carb omlette" implies.

Calder had come over to my side of the table and we were "eating" yogurt together, meaning that I was picking out the whole fruit and eating that while he would get fed spoonfuls of creamy *pink!* yogurt.  I decided to point out that while we had to dismiss the oatmeal and banana, I was very proud of him trying a yogurt color other than the usual white.  Right in the middle of my compliment he got his bundled silverware, asked me to unwrap the napkin out, walked over to Dad's side of the table and proceeded to spit out all the contents in his mouth, which was creamy yogurt, a strawberry molecule and spit.  Eric started to tell Calder that doing that was gross and unacceptable when I interrupted him and said that it was I who taught Calder to spit out food onto a napkin.  Otherwise it would have looked a lot worse...spitting in his hand, spitting in my hand, spitting on the table, spitting on the floor all possibly while freaking out.

In this moment after Eric's side of the table has been cleared of anything the baby could grab, while Elodie was eating bits of cut fruit (dropping some on the floor next to the fallen cheerios from last nights dinner), I noticed how thoroughly I had picked through my egg and bacon muffin.  I wondered out loud "I see where Calder gets his pickiness from" while complaining that american slice cheese ruins anything it touches.

So here we were a family all feeding each other.  Without the carb sides, Eric was still hungry and I was feeding him spoonfuls of my rejected american slice cheese and disproportionate amount of egg on my muffin.  Eric was feeding the baby, I was feeding yogurt to myself and Calder...

For most of my life I've never bothered much with "blending in", but this morning I really felt like a family with very freaky rituals revolving around food: like maybe even when we are in the privacy of our own home we take turns feeding each other under the full moon, facing West.

"By the light of the moon...by the light of the stars...from there to here...from here to there...funny things are everywhere". (T. Geisel)

using our imagination

Counterfactuals are the scenerios we play in our minds to imagine other worlds: what might happen,  what could have happened.   Counterfactuals are the "woulda,  coulda, shouldas".  The ability to create alternative worlds in our mind is a very common human trait.  We do it all the time.  It allows us to imagine our world in a different way and allows us to make changes in our world. We see this phenomenon in children manifest through imaginary friends, pretend play, and made up stories. 

In studies, it has been shown that sociable children are more likely to have imaginary friends than shy children. Having imaginary friends allows a child to have greater theory of mind: a term used to describe the understanding that other people can think differently and have different beliefs and intentions  than you do.

Children with autism,  on the other hand, do not live in a world of counterfactuals and struggle with theory of mind. They are most comfortable with facts only and things which are measurable, logical and predictable.  For many kids on the spectrum, pretend play just doesn't make much sense...why bother?

I've noticed lately that Calder has a really hard time making things up, surmising, and guessing.  If it is not clear to him what is happening in a new picturebook for example, he hesitates to guess, or even make things up.  "Whats happening in that picture?".  "I don't know".  We are learning right now how to 'use our imagination'.  Our imagination is in our head (as concrete a biological placement as you can get),  and our imagination is the part of us that makes up stories.  This stumps him.  Calder wants to be told the right answer in which case he will memorize in one instance.  When asked the same question again at a later date, he will find the answer filed away in his mind and recall what you had once said.  That is quite different than looking at a picture for clues to what is happening.

The other day I was trying to explain to him that when I  cook rice pasta, I don't time it, I just guess when it may be done and then I test it.  This really rocked his world.  Up on his stool ready to punch in the time on our microwave timer, he just could not accept 'guessing'.  We went back and forth forever...."give me a number", "no Calder, I'll wait and test it". Rice pasta is not nearly as forgiving as semolina pasta.  It goes from raw, to falling apart and mushy very fast.  And it depends on how much water and pasta is in the pot which I never measure.  I think this is why he loves recipes and baking as much as he does, it is very concrete.  Baking, in fact is much like a science.

Calder has been working on story skills with his therapists the past few weeks, and already since I have begun this post about a week ago, he is beginning to explain pictures. I don't doubt for one second that one day he will be making up so many stories I'll have to wonder what is truth and what is make believe.

you say hello....I say goodbye...

Up until a couple of months ago, Calder has had anxiety when greeting others. Not so much family and dear friends, but people like: neighbors, the crossing guard, the bus driver, some of the elementary teachers at school, so I guess "aquaintances". Here is what that might look like: we are walking along and someone who knows Calder will say "hey Calder", and they may come over to chat. He then mumbles something like "oh", or "oh no!", bows his head and often will drop to the floor and kind of ball up. If he is near a table, he may try to go under it or might curl up really close to the stroller wheels or a bench nearby. I usually take a moment to greet the person, or they may then turn their attention to Elodie in the stroller. As soon as they are gone, Calder will perk up and resume where he left off, seemingly alright. Sometimes he has been known to say aloud, "I don't like that man".

So I decided to print out greeting words from the internet. We taped them up on one of the walls in our dining area, and Calder likes to occasionally read off the words on the list. We've had this list up for a couple of weeks. It was two days ago that Calder felt ready to 'field test' his newfound vocabulary.

Before school the other day, he asked me if I could write his hello words on an index card so that he can take it to school with him, which I did. When we got to his classroom he found one of the rougher kids to practice on. He walked up to the kid who was taking off his winter coat at the cubbys. With index card in hand he says to the kid "Hey Dude". The kid looks at Calder like he was an alien. Probably because this new greeting is in such contrast to his usual inwardness. I doubt Calder has ever spoken to this kid before.

As a Mom, you want your kids to succeed. You teach them about how things work the best you can and you pray to God that when they decide to try or test something you've tought them, that it all works out the way you say it will... Well, when it's kids you're dealing with they are entirely unpredictable. The rough kid never said anything back to Calder and after giving Calder a strange look went about his own business. Calder looked at me perhaps thinking "is that how it was supposed to work?" So I said to him that sometimes kids are not ready to say hello (hoping Calder would relate to this). And that was that. Walking home I was a little bummed that after so long, Calder decided to try a greeting, prepared for it and was brave enough to initiate it and it kind of just flopped. Ouch.

When I picked him up from school that day, I saw he had his list again walking around the classroom. I was speaking with his teacher and off to the side I barely noticed a couple of kids chatting. All of a sudden Calder turnes to me and said "It worked!". Knowing that he had just tried another greeting word, and with proper reciprocation felt gratified and shouted to the world, "IT WORKED!". I felt so proud of him, and so happy, and so GRATEFUL the other kid replied to Calder!

To an outsider it may appear as if Calder wanted to avoid people, which can be a personality trait I suppose. But given the opportunity to learn what is expected in a certain (social) situation, he came out his shell. He is eager to know how we interact as people in this culture of ours. He soaked up the greeting word list like a sponge. Not knowing what to do, or not knowing what others expect from us can really wreck a nervous system, whether we are speaking about a 5 year old, or a spouse or a boss. Just give me the tools already, just decode the expectations for me and I'll show you what I am capable of.

a letter to my son....

Calder, tonight at age 5 you started asking me about death. I stumbled through some explanations trying to be honest yet simple. Almost impossible, when your'e speaking about death.
"Mom, what happened to Nemo's Mom?"
"well, she died"
"why did she die?"
"the barracuda got her"
"am I gonna die?"
whew....what do you say in that totaly unprepared for moment? I gave him straitforward answers, rather grim I'd say. I realized after this bedtime discussion that I can tend to lean toward the pessimistic. So what would be the optimistic thing to say? That is the discussion of God, Jesus, and angels. I never really knew how to begin that conversation about Jesus and who he was: the bible stories. But if I had to describe death and afterlife to a 5 year old who loves doors it would sound something like this:

One day, hopefully when your'e really old and you have had a family of your own, after being given the gift of a happy and full life you will come to the end of it. Death is like a door you pass through, except you only go through this door one time and you leave your famly, friends and all your things behind you in the place you just left. Even your body, you leave behind in the other place. Only your soul can pass through this special door. It can feel very scary because you will be leaving so much behind you.

When you're young you are in the Spring of your life, still growing like the sapling. When you get older you have alot of fun in the Summer of your life and you experience so much and learn about what it means to be grown up. In the Autumn of your life you begin to teach things to the people in your life: things you have learned that you can now share. In the Autumn of your life you may choose to create a family of your own. Autumn is knowledge. The winter of your life is when you slow down. You notice the things really close to you. You do a lot of remembering. You are the wisest during the Winter of your life.

Some of your family and friends will die before you do and they will pass through this special one-way door. They will be on the other side waiting to greet you. So, although it may seem scary for just a short time, soon you will feel very good inside. You will feel so good inside that you will not want to go back through the door to your old life and your old body. You will want to stay in the new place you're in. Different people see different things in the new place. You might see Gage. Some people see bright lights, some see angels, some see meadows, some see tunnels, some see sunsets, or sunrises, some people may even see Jesus.

Remember your sunflower you grew in Jan's classroom? You saw it start from a seed you planted. Then you saw it start to grow, (when we thought it was actually a bean plant). In the summer, you saw it bloom into a flower, and in the Autumn you saw it bend over it's head and make seeds. In the winter you helped pick out those seeds, and next Spring you will plant those seeds and watch them grow all over again. Even though the new plant will look the same as your first plant, it will be an entirely new plant. And so the world goes, year after year, before and after we walk through our lives.

Robbie the Robot

It is recommended that young kids get limited T.V. and computer time. When Calder was around 2 and 3 years old, I really had a lot of guilt and grief over letting him watch T.V., videos or be on the computer for any length of time. It was around his 3rd birthday, that he learned his alphabet, on his own, using the computer. His Grandma and Pampa were here to celebrate his birthday and had bought him a Sesame Street computer game. While Pampa and Calder were sitting at the computer together, I could hear Calder (who was not speaking yet), repeat the letters of the alphabet! No one prompted him to do that , he just did it. It didn't take long before Calder could recite the entire alphabet on his own, without the help of his computer game.

At 5, Calder now knows how to read at about a 3rd grade level, I'm guessing. Other than reading books with him at bedtime, I really have to give him all the credit for his reading skills. We never pushed him to learn his letters, or to read, in fact we DID teach him in other deficient areas, mostly social skills. But he basically tought himself to read and write.

There is a browser called Zac Browser, that was developed for kids with autism who play online computer games. It takes out any ads, membership requests, any unnessary banners and words and simply presents the websites as icons on a dashboard. There is one site in particular that is Brittish and the stories are told with an accent. They are mostly social/emotional stories: "Robbie has a hat he loves. When Robbie goes outside the wind blows his hat off. Robbie feels sad". Robbie is a simple animated guy with a monitor for a head. On the screen is a face of a real guy with blond curly hair. Personally, I think it is a little creepy, but Calder seems to really love it. He plays that particular game a lot.

I don't remember where we were, or when it was exactly, but once Calder saw a kid crying. Up until that point, Calder never really noticed the emotions of others. We had to teach him, by demonstrating facial expressions, all the simple emotions. Tell me how funny it is to take the time and mental energy to say, "look at my face, I feel MAD", when I would be furious at something. That takes great mental power.

Back to the crying kid. It may have been a friend, or a kid at the park, but when Calder saw the sad kid, he says in a Brittish accent "look that girl feels sad, we can give her a hug to help her feel bet-tuh". At this moment I had an epiphany! Since hearing a perfect Brittish accent coming from my adorable kid....since my kid recognized an emotion of another....and since my kid KNEW what was an accectable and even socially expected response...I knew it was Robbie who taught him that! At that moment, it occured to me that Calder was learning social behaviors, not from observing Eric and I or his peers, but from a computer game.

So began the letting go of all the guilt over computer time. In our family, the computer and the T.V. have been great learning tools. Sure they have to be moderated, or else he would spend hours on them. But they teach him things that he couldn't learn from us.

"I like astronomy"

John Elder Robison is an author and public speaker who has Asperger's syndrome, which is often associated with autism. John describes his Asperger's as "mild autism". There is one particular speech of his that Eric and I have listened to where he describes a personal view of missed nonverbal communication:

"If you were a kid and you came up to me and you said, "look at my new picture book", I might say "I like astronomy". And that was not the response you wanted and you would try again and you'd say, "look, it's all about horses", and I would repeat "I like astronomy", and you would wander off. And as funny as those things are today every one of those failed encounters for me, carried with it a sense of real crushing sadness because each time I wanted to say the right thing. I wanted you to like me for whatever I had done. I wanted you to share your picture book with me but I didn't know how to respond to you in a way that would work".

In our family, we often hear pretty random remarks. Adults will get asked their favorite color, then their birthday, then their age (we're working on that one). That is how Calder knows how to greet others. But when the question comes to him "what is your favorite color?", first he'll tell you his favorite color and then tell you the birthdays of all his grandparents, and just when you think he's done, he'll continue and tell you what states they all live in. And that is the answer he may give you if you asked him his favorite color. Opening up in this way is relatively new to him. Soon he will learn about 'too much information'. His interest in others is growing and he does not yet know about social expectations. One day, his greetings will be seamlessly typical, but for now, I am really loving this endearing effort to engage and commune. It puts a big smile on my face.

I had picked Calder up from school the other day and as we were walking home I decided to remind him about an appointment we had later that day. We were going to visit a speech therapist whom Calder had not worked with yet. I was a little apprehensive because I had not prepared him much for it. "Calder, remember we are going to go home and have a snack then we are going to go play with Deb at Zoe's office". Waiting for his reply, which could have easily been a protest he says: "But, but, but, but, but, but"....here I am worried what he will say next. Usually the "buts" mean that he is not going to comply. "But, but, but, but tomorrow is Veteran's day". Huh? I was really taken aback by this on many levels. First of all where did he learn about Verteran's day? Next, why didn't I remember it was Veteran's day? *embarassing*, and lastly it has NOTHING to do with the appointment I was telling him about. I was so overcome with suprise all I could do was laugh and lavish in the awkward silly beauty of the moment. I let it go, and I assumed that somewhere in all those "buts" that he actually was o.k. with the appointment and just wanted to share with me the new thing he had learned in school that day.

I know his greetings with peers must be awkward. I'm sure some kid has walked away from him after attempting to engage him. I'm sure Calder may not have known quite what was expected of him. A missed opportunity? Would he be sad? I can't know that yet. It's a sober thought. But, Eric and I and Calder's therapists will make sure we teach him these social tools. Instead of an instinctual and direct social mechanism, he'll have learned a work-around. The end product will look the same, but the journey getting there will look different.

Luxury Travel

Luxury travel: trip to the Bahamas, or a sailboat cruise....flying first class....having cocktails at 30,000 feet...all inclusive....no, folks traveling with kids have a very different definition for "luxury" travel. For me, luxury is listening to an MP3 player while flying.

I watch all the folks traveling in airports don their ipods, ipads, laptops, kindles, nooks, heck just having a plain ole book or magazine is luxurious. Folks having hands-free phone conversations...with TOTALLY free hands! They have their hands free and no kids, now that's luxury.

For me luxury means something very different. This last trip luxury was in the form of a salted caramel 75% chocolate bar my hubby packed for me to be given at just the right moment. Luxury also can be a play area or a Mcdonalds in the terminal. Did you know that very few airports have areas for kids to play, besides the empty gates? Luxury also comes in the form of happy, listening,well-behaved kids. I noticed an interesting phenomenon recently. When you sit in your airplane seats with kids in tow, people leave you alone and don't make much eye contact. But when your kids are pretty much silent the whole flight, as soon as the plane lands, everyone is your best friend, telling you how awesome your kid/baby is (now that any chance of them being stuck next to a screaming baby or tantruming 5 year old is over).

I fly about 4 times a year. Since Calder was born 5 years ago, I have only been able to fly and listen to an MP3 player once. Listening to U2, or Radiohead while looking out my small oval window to the clouds below me, or at the sunset before me, or looking at cities with their lighted grids, is much more luxurious than hearing jet engines and making sure my 5 year old is not mindlessly kicking the seat in front of him.

Yeah, its hard work keeping everyone happy during traveling. It's a full time job. You bet I'd love a couple of those five dollar cocktails, but I opt for no drink usually, because quite frankly I've nowhere to put it.

But luxury aside, one of the best feelings in the world is to hold my sons hand as the plane takes off: to open his mind and experiences through travel. To pass on my love of travel to a wide eyed(mostly) 5 year old. To see the look on his face when he sees that for once, clouds are underneath, and that sometimes cities look really small. To realize when we are walking to school and look up at an airplane in the sky that there are hundreds of people, hundreds of destinations, hundreds of stories way up there in that little speck.

now I'm going to say the E-word

Every night last week Calder had been counting down the days until my birthday.  After his bedroom routine, as I would  leave his room, he would stop me.  "Hey mom, I'm growing bigger".  "Yes sweetie you are, every day getting bigger".  "And Mom, 6 more days until your birthday".  Every night he said that.  "6 days...5 days...4 days...3 days ...2 days...only one more day!" . On Friday morning, the first thing he said to me after I woke him up: "It's your birthday!"

Friday was a regular schoolday.  Regular, with some halloween activities throughout. School party and costume parade, special activities and snacks.  I was involved in these things and so I was in Calder's classroom a lot this day.  As soon as we got home from school,  I handed him off to Grandma and Pampa, who were visiting from Denver so I could busy myself with more things.

I had volunteered to purchase supplies for the Costume Ball which was that evening in his school gymnasium....which meant, bake 150 cookies as well as buy hundreds of tiny trinket prizes.  After setting up for the party I hurried home for a quick bite to eat and to nurse Elodie.  As I was walking up to the front door I noticed Calder had written in chalk, on the sidewalk:
Happy
Birthday
Mom
42

Eric and I had agreed to celebrate my birthday on Saturday since Friday was just too jam packed with other obligations.  But we hadn't explained this alteration to Calder.
The whole gang walked to the school together to attend the Costume Ball. I danced with Calder for a little while, but I often needed to tend to the snacks and prizes, running here and there.  At one point Calder turned to Eric and said "but what about mom's birthday?"

Now that last bit really gets me.  Empathy is this huge "attainment", which sits on the pedestal of human development,  like a trophy.  Some  young kids and adults even, do not have a trophy of the E. kind. In some autism circles, the E. word is a pretty sensitive issue.  Some say empathy can be taught.  Some say spectrum folks lack empathy.  Maybe empathy is simply a skill that we are all endowed with at some degree.  But on this particular Friday, I saw that my child is quite capable of empathy.  It touched me and moved me and I think because of those innocent words from such a young kid, I may have had the best birthday without celebrating my birthday ever.