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)