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?'