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!