Friday, December 23, 2011

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.

Tuesday, December 6, 2011

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.

Sunday, November 20, 2011

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.

Thursday, November 17, 2011

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.

Friday, November 11, 2011

"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" 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.

Thursday, November 10, 2011

Luxury Travel

Luxury travel: trip to the Bahamas, or a sailboat cruise....flying first class....having cocktails at 30,000 feet...all, 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.

Tuesday, November 1, 2011

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:

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.

Tuesday, October 25, 2011

variety is the spice of life, right?

We went to the Santa Fe Place today, which is a quiet mediocre mall. We went there to spend Calder's hard earned quarters which he made by doing some chores around the house. His choices were the little boat, bus and helicopter rides that sadly just go up and down. After riding three, he had one quarter left and being that the rides were 50¢ we were done. But being a kid with a quarter in his pocket we were off to find if and what we could spend our last quarter on.
I spotted an island of brightly colored gumball machines.....maybe these would give us something for our quarter. Since Calder does not like candy, I spotted a few machines that gave out a little trinket. Fun! He gets a rubber bouncy ball that he rather quickly stashed in his pocket without even bouncing it once.

Then came the ubiquitous kid question. Can you guess? "Can I have more money?" Now, I had a dollar bill: my money. I almost started with the white lie, "I don't have any more money". But instead I thought..."hey, maybe I can get him to try tasting a candy". How many Mom's do you hear say that? We made an agreement that if I gave him my money then whatever he chose to get he at least takes a "no thank you" bite. The No Thank You Bite (which I purposely capitalize) is a pretty genius idea we stole from one of Calder's best friends who is 4. A great way to get a kid to take a single bite of food. Sometimes if the kid likes the taste...well you know......

So first he picks the little square multi colored gums. I teach him how to cup his hand to catch all the colorful falling candy. With trepidation written all over his face, he takes his favorite color of the day, green and chews it up. Then he starts gagging. I dig frantically in my bag for something to spit into. Out comes all the little pieces and a whole lot of green spit. Ok, so he doesn't like little colorful gum. "Want another quarter?", I say, pushing my little agenda on my kid. He goes in for a second try. This time, something like a sour smartie: a flat round colorful candy. This time I opt for no chewing and I show him how to lick it. This goes rather well, again lots of green spit, now all over his hand. But he didn't gag. We take turns showing off our colored tongues. Yes, we are in public. No, I don't care. I have one more quarter. Now he chooses the colorful tart candy that is in the shape of fruits. He popped it in so fast I didn't even see what fruit it was. As soon as he chews that up, more gagging.

Who knew that an island of 40 gum ball machines could be cavities for one kid and therapy for another? Not even his nutritionist could get him to try new foods. I say that with a little liberty. She worked mostly with me, helping me with ideas to help my son. Yeah, I know some would argue that candy is not even "food". For us though, it is more about simply trying new things. Calder's repertoire of food is pretty restrictive. If it were up to him he may just eat pasta (only the shell shaped kind....with a white sauce, no red), mashed beans (only pinto beans) cheese sandwiches, fruit, "hexagon" crackers and fake sausage patties (not the real kind) the rest of his life. I know, I know, that wouldn't be so bad. His Grandy has been eating PB&J's for nearly 50 years everyday for lunch.....and still is! No, for some reason I feel like variety is the spice of life and I want Calder to have a little variety, or at least not to be too offended by it.

Wednesday, October 19, 2011

potty talk, no really....I mean the toilet

When I write, somehow a transformation begins. Something that is difficult seems to have a little less power over me when it's written down. That's the medicine of the process. So I am attempting to write about the frustrations of this morning and why something rather simple can be so difficult and charged for me.

Just like every schoolday morning we get up at 6:30. With minor bumps, Calder eats his oatmeal and gets dressed with the bribe of getting some computer time. Playing the computer is a highly valued activity and I can usually get something out of it. "First get dressed, then you can have computer". So, as well as he ,I too "need" the computer.

Since the computer is such high interest, that is when most accidents happen. As I come over to check on him, I notice he has made an accident. It causes him much grief to tear away from his favorite activity to go finish up in the potty, and this he is very upset over. I think to myself, "this has to be a good experience, if I want him to be able to leave the computer on his own to go potty". I feel my blood pressure start to rise, but I gotta play my cards with a poker face.

The thoughts start in my mind..."he'll have to be able to get back on the computer or this whole stop-to-go-potty-thing will backfire"..."he can be late for school right?"......"wouldn't his teachers rather him make a BM at home, than have another accident at school?"..."let go, let go"...meanwhile he is not having any success. He's hugging me, almost in tears while he is sitting on the potty. Even though I haven't said it, he knows that this will make him late and he is pretty stressed out about it. He doesn't know where to begin...

We then strike a deal and he manages to have a little success. We agree that after he puts on his shoes, he can have 6 more minutes computer. At first it was only 5 minutes, but then I upped the ante with putting on the shoes, so I had to then bargain with 6 minutes. This seemed to work. I followed him to his room and reminded him that he may want to put on socks since it is getting a little cold outside (we walk to school). He chooses no, and I don't fight this one.

6 minutes of computer....check.

I use this time to get the baby ready and put her in her stroller, line up jackets and gloves, etc....
Ding, time is up. We had already discussed that when the timer dings, he does not dilly-dally and moves "moderato"...This means he doesn't go too slow. He loves to discuss speed in musical terms: adagio...moderato....allegro...presto.

Well, he doesn't move "moderato", he moves adagio, VERY adagio. If it were a symphony, it would be a dirge. Trying to hurry him up makes it worse. He does not seem able to process that hurrying will help us get there on time. Hurrying just adds another stressful element that he has trouble regulating. Now, I'm getting really sick of it. It's very hard at this point to "let it go". I still have my poker face, but I bet he can see right through it.

Now he wants his socks. Rather than lecture him on "I already asked you" I just keep it to myself. Is he stalling? Too stressed to figure that one out, I go myself to get his socks, to hasten the time. He knows how to put on his socks, but he asks me to. Again, I do not feel like this is the time to teach him a lesson. I am a Mom with a mission. GET MY KID TO SCHOOL!!! What you don't understand is that we still have to put on the jacket, scarf, hat, gloves and hasn't even begun. Usually I allot time for all this by getting up so early...but the accident threw us all off.

He gets his jacket on, good. Gloves go on rather well, great. I help with the scarf. Pop on his hat. "I need hexagons". Munching on "hexagon" crackers while he walks to school will help calm him down. After a moment of instinctual resistance to his demand, I go get him some hexagons......Sucker you say? Well, you haven't seen how stressful walking past the crossing guard with the loud whistle can sometimes be. I'll do whatever I can to help this go smoothly. I know we are late. I'm trying not to guilt him over it, after all pottytraining is worth being late. But boy am I frustrated! I feel like I am doing this strange ritualistic dance that no one would understand if they saw me, in order to get the planets to align, so we can make it to school without a full blown meltdown.

Were finally on our way! As we walk a few feet past our house Calder stops and says "my backpack!" Oops, in all the scurrying, we had both forgot his backpack. So turning the stroller around we go back to our house and get it. I can almost laugh at this point...but not yet.

Almost to the crossing guard, I wonder if Calder will miss his earplugs. Very often Calder will choose to wear his earplugs as we walk by the crossing guard. This seems to work well for him. But this morning I notince that the earplugs are missing from their usual pocket in his backpack. I don't say anything and Calder chooses to use his hands to cover his ears. Thank GOD. That is another meltdown we diverted!

Once at school. we have to get a late pass from Louise the secretary. I need to make sure this is not fun for Calder, but not too stressful either since this morning he is rather "fragile". I make him stand in the line of late kids when he really just wants to cling to me. Then I make him walk by himself to his class. This he silently does. I wonder what may have been going through his head. I'll know next time we are running late.....

Saturday, October 15, 2011

galleries are not just for grown-ups

Some days are hard, really hard to get through. Some days I wonder how Calder will make it in this world.....then there are days like today. When everything seems perfect.

When I was pregnant with Calder and after we decided to move to this little art hub of a city, I said to myself that I would expose Calder to art by visiting the galleries on Canyon Rd. starting when he was an infant. He could stroll in his stroller or sit in a sling and just look at all the colorful paintings as I would whisk by..... Well, it became apparent early on, that just wasn't going to happen.

Starting early in his first couple of years Calder had a bit of a hangup with doors. At first it was cute how he would open and close them. Then it became a hassle to wait while he opened and closed them over and over. Some places like Trader Joes are awful....where the doors are automatic. Still to this day, if he is with Eric or I and we approach automatic doors, he insists we wait until they close so that HE can make them open. Try doing this on a weekday evening when everyone and their mother are out shopping. Many times, it goes like this: 1- look like a creampuff and give into it, or 2-face a meltdown. What would you pick? Well, I opt for the creampuff.

Today we decided to take the kids up to Canyon Rd. for an open gallery walk. We parked the car on a side street and walked up to the first gallery. Outside we saw large sculptures of animals which is totally fun with kids. We went inside where I noticed there were several tiny doors and steps leading to small rooms with more doors in those rooms. Calder definitely noticed all the doors. One gallery we went into, Calder's first words were "where's the elevator?". All being single-level adobe architecture, I knew there would be no such elevator. For those of you who don't know Calder, lets just say he loves elevators even more than doors. When we take him to Explora in Albuquerque (a children's hands-on science center) his favorite thing, hands down, is the giant red elevator WITH A SOFA INSIDE! I have to agree with him it IS pretty darn cool.

So guess what? No door hangups today, no blocking the flow of onlookers with a melt-to-the-floor-freak-out-puddle, no loud hollaring as we drag him out the serene gallery. No, it was much better than that. Went more like this: "let's discuss the art, which is your favorite?", "yeah nice door huh?....but can you spot the white buffalo? yeah, there it is". When a few folks spoke to him, he didn't run off or cower to the floor or say *and I hate this one*, "I don't like that man". Rather, he spoke with them. He even painted when one of the local gallery artist invited him to paint on his mixed media piece. Holy WOW! I want to say to everyone, you know how big a deal this is? That he is speaking to you and looking at the art? He's 5! He's 5, with autism. I was so proud of him. And you know what? He had fun. I made sure to ask him several times. He definately noticed all the doors, steps, keypads, lighswitches and the lack of any elevator, but he knew that was not why we were there. We were there to look at art.

Thursday, October 13, 2011

cats aren't red, except at our house

It was just this year that Calder has shown an interest in our neighbors. The lady next door to us has a beautiful dog and Calder has also befriended her pooch. Big deal, since Calder thinks he doesn't like dogs. Up until last Halloween he has not been very interested in "dressing up" in a Halloween costume. I think last year I even gently forced him to be a pumpkin. I love Halloween. It is the one time of the year you get to be your secret fantasy, your alter ego, even your own nemesis and no one looks at you like you're crazy. It's perfectly acceptable. Anything goes.

Other than the forced pumpkin costume (premade unlike me) there has not been that much discussion around the words that are associated with Halloween. Calder came home from school the other day saying all kinds of Halloween words, including the word COSTUME. I jumped on the opportunity as I saw the door was wide open. "So, would you like a Halloween costume?" "yes". "What would you like to be?" I named off a few ideas just to make a point: prince, pirate, lion etc...."I want to be a red cat". "A red cat?" A part of me, a very small part of me wanted to say that cats aren't red. They are sometimes orange, but never red. If I make you a RED cat costume, people will mistake you for Elmo. But I held my tongue, knowing that if a red cat is his fantacy then that is purrr-fectly acceptable, even if it misses the reality mark. Hey, it's Halloween, right? My job? to make sure no one thinks he is Elmo.

We went to the fabric store together, agreed on a red fuzzy fabric, came home and began. Every step of the way makes Calder so happy. "this is so exciting!" he says as I am sewing up all the parts. Secretly I too am having a BLAST!

Back to dogs and neighbors.... Another word that he came home saying was Trick or Treat, which I knew he had no idea what it meant. I explained it to him and he said he was game to go Trick or Treating at our neighbors houses (that is 3 people, maybe 4 if he is willing to walk over to the other street). We'll see how this goes, and I'll have to get back to you. But I will say knocking on doors and asking for candy that he doesn't like is not his cup of tea. But you never know when the door of opportunity will open. I have to be paying attention in order to walk right in with him when he's ready.

I am prepared for the actual Halloween night to be a flop. I don't have those expectations. The joy has already been had in the seeing his little face light up when I make his dream a reality.

Thursday, October 6, 2011

from cookies to calamari

Calder loves to bake. If it were up to him he would bake a batch of sugar cookies every day. This is a bit of a problem since I have a serious sweet tooth (and that butter seems to be so pricey). When needed we give the confections away. He doesn't so much like to eat his creations, but rather just likes to bake. I try to support our sweet little baker and extend his love of baking into other things that I am preparing in the kitchen. He will help me prepare meals and generaly just wants to be in the kitchen with me pretending to help out, even if this just means making me a cup of earl grey tea, or a french press pot of coffee while I am cooking his dinner. How far can I take this, how adventurous is my little chef? Well, tonight I was making soup. Not just any simple comfort soup that MAYBE there would be a chance in heck he would maybe cold winter his teen years. was Tom Yum Goong, a Thai hot and sour prawn soup.

In this soup there are many unusual ingrediants that I needed to hunt and seek out, mostly at Pacific Mercantile in Denver, an Asian grocery. You'de think if I was going to go through all this trouble that I would actually follow the's the pathetic part (and yes I am going out on a tangent now), the soup is basically a prawn soup. Prawn meaning shrimp. I have shrimp sitting in our freezer. But they are my last dear two ziploc bags of gulf shrimp that I carried back on the plane from a trip to, I thought I'll just buy some unfrozen shrimp, just enough for the soup. When I got to Whole Foods (the only place I will buy shrimp here in land locked New Mexico) well, the prices were just I opted for calamari......yup, tastless squid. It was only $6.99/lb. Hey squid is seafood. I am infamous for altering recipes and it is almost always a disaster. I had an agreement with myself that I would never alter a recipe again... I am not naturally gifted in the culinary arts and can not create well in the kitchen. Regardless, the soup turned out limey and peppery and that is about it.

But the beautiful thing is I got Calder to help with the slimey strange seafood. I think the only thing that made this possible was that squid when cut makes really neat circle shapes, which Calder loves. As I cut the small circles he would take each one and put it in the soup. Wow, he has come a long way. No he didn't eat it, and probably never will. But touching food is one of the 38 steps it takes to eventually eat food. And he touched it! This is a kid who would gag when just stirring up the ingrediants to make spinach quiche. Some folks may teach their kids not to touch/play with their food, but in our house it is encouraged.

Monday, October 3, 2011

speaking out the spider's web

I remember it very clearly: the day my son began talking in sentences. It was a sunny day and we were all out in the backyard. Therapy with a three year old looks like play. It is play-based: meeting the kid where his interests are. This particular day Calder was enjoying sitting in the wooden slatted landing to his slide. A large swing/slide set his grandparents all pitched in and bought him for Christmas.

Calder wanted so badly to have us give him some colorful plastic balls to roll down the slide, but he didn't know how to ask for them, causing much frustration. Our therapist, Zoe, tried prompting him to say "three balls please". A three-word sentance was a real challenge back's hard to believe. But regardless, at almost 3 years of age, he had few words he could speak. I could see his little brain trying so hard to organize his thoughts and bring them to life, but alas, frustration.

It was then that Zoe decided to use rhythm. She accompanied "three balls please" with three taps on the wooden slats. One tap per board per word. And his eyes lit up! THIS, he could do. I can still see his face now, so happy and relieved. The door opened. Calder then used his own hand and while tapping three times on the wooden slats was able to say "three balls please". We all were so happy for him. We did this over and over again. Each time Calder wanted to ask for three balls he couldn't until he looked over at the slats of wood and tapped his hands on three of them, and each time he did this the words flowed out his mouth easily.

A huge step was made that day. Some children and adults on the spectrum remain non-verbal their whole lives. They are intelligent and have much to say, but their words are trapped in a web of crossed wiring. Like a doomed insect caught in a spider's web. Many things have to take place in the brain for speech function. We take it for granted most of the time that we are able to process incoming and outgoing language. And it all happens effortlessly...for most but not for all.

Saturday, October 1, 2011

little boy blue

Cats in the cradle and the silver spoon. Little boy blue and the man on the moon.
People often tell me that I am very patient. I try to be. I try to stay in the moment. But often I find myself rushing, especially with Calder. Rushing just to barely keep up. He is still a little boy, full of wonder and discovery. I sometimes feel too rushed to stop in that moment and discover and wonder with him. In his IEP, we have stated that he be given wait time when asked a question but yet I get so frustrated when he doesn't answer me quick enough. When he is so happy and full of boisterous joy I find myself saying shhhh. When he gets so excited he just can't listen anymore I can totally loose my sense of humor and my patience.
I want to laugh more with him. I want to join him in his silly shenanagins. I want to be able to be a kid again, in that moment. I want him to know me as a person with a light heart and gentle tenderness.

Monday, September 19, 2011

don't sing please

Eric and I are both very sing song-y people. We'll sing in the house and we sing in the car. We will even answer each other in song. We beat box rhythms together (he being a drummer is naturally gifted with beat box). It's kind of discusting...we can't help it.

As speech comes in, first a child will name things. Nouns. Ball, swing, toy, car, etc. For us, the next step was to teach Calder how to ask for what he needed. Usually you begin to pair two words together: Want food, more milk, juice please, Mama help, then onto three word sentances etc... We decided it was important to give Calder words that he could use instead of just freaking out. Freaking out was one way to communicate, but a way no one really likes. Calder didn't begin to speak until around 3 years old. As an "older" kid learning to speak, he had already had quite a lot of anxieties and fears that would manifest through freaking out. He needed some words.

One phrase we decided to teach him was "don't talk please". "Don't talk" being the language we chose to help him, and "please" so that maybe it would sound nice....He learned this very fast and soon was using it for everything: He used it to mean "don't talk", but also to mean, "I don't like that ", "stop", "I don't like your answer", "I do it", "go away", "no".... He was basically using "don't talk" for any high stress situation. Sometimes when he said "don't talk" it was awkward and made no sense.

"Calder, do you want milk or juice?"..........."dont talk"
"lets go to the store with Mama"................."don't talk"
"Calder, where's my eyes?"........................"don't talk"

Then "don't talk", expanded to "don't sing". He would say "don't sing" for everything he did'nt want us to do. We spent a long time getting him to use "don't sing" appropriately. Now at 5 years old, he's got it down and says "don't sing" whenever Eric or I hum a tune or sing along with a song. You would think we'de know by now. We always forget and he always reminds us. "Don't sing". "Don't hum, Dada". Its a funny thing to teach your kid to differentiate "hum" from "sing", just so that he can tell you not to "hum" when you're humming. Well, at least he is not freaking out.

Our therapist thinks he's got perfect pitch and it is pitch he is sensitive in "Mom and Dad suck at singing". But really, we're not that bad. We can sing in tune. I look forward to the day when he can tell us why he does not like us singing. I have my theories. Don't get me wrong, HE likes to sing....sings all the time. I can sing directions to him or sing questions, just not songs...unless it's snuggle time in bed at night. That is the one SURE time of day I get to sing with him.

Friday, September 9, 2011


It was when C. was 2 years, 10 months old that I finally called New Vistas, an early intervention service here in Santa Fe. He had been hitting all his milestones pretty late, and some not at all since he was younger but it wasn't until I noticed the way he played that I had to be more proactive in getting him evaluated.

Among other delays, he crawled late and I said that he just wasn't motivated to move. He would sit in one place, where I would place him on his quilt on the floor. He would not move out of curiosity or motivation to another part of the room, or even to a different toy.

By around the age of two I noticed that he would play for an unusually long time by himself and be perfectly content....for hours. At first I would say "woo hoo, I can get so much done...he is so independant!"

But as he neared his third birthday, something in me changed. I watched him play with a bit of unease. Sure it was great he played so long by himself.....but really, is that alright? I noticed that he had rigid ways of playing with his toys. But the real clincher....he was lacking the joy that most other kids would find in their toys. His play was more strategic and I wondered " is he even having fun?" He would not smile or laugh. When he played by himself it seemed more "necessary" than joyful.

That's when I called. That's when I knew in my heart that something was off.

I am a huge believer in early intervention. If you could see C. now, you would never know what I have just described. He always wants us to join him in play and seldom sits and plays alone. He wants us to be involved. Our therapist once told us when we just started with New Vistas, "It's not that he doesn't want to play with's that he doesn't know how."

It's ok if he is introverted, shy or not very social....that's ok by me. But if a door in his mind is sealed shut because of some off wiring in his young brain, I certainly want to be the first person to hand him the key....just in case he needs it to open his door.

Wednesday, September 7, 2011

our Giants

I stumbled upon this photo this morning and for some reason it really moved me.

I've always loved the saying "standing on the shoulders of giants". You can't see it very well but in this photo, C. is standing on all the names he has written. Everyone in our family. No one is perfect...but to a little kid, everyone is a giant. This is a very magic time in our little boy's life. There will come a day; a moment when the little boy will be gone and in his shoes stands a man. Childhood should be magical for every kid. Mine was. I was pretty lucky, magic lingered with me for quite a long time and I was mystified by the simplist of things.

Saturday, September 3, 2011

baby wipes

This post has nothing to do with kids....well, not really....

You know Borders is going out of business. Since there are less than 10 days left to shop deep discounts, I went by to see what was left. Now, how do I say this next part? Sometimes when the shopping is particularly exciting....well, I need to visit the ladies room. That being said as discreetly as I can, I was in such a rush I didn't check to see if there was toilet paper....

Of course they're not stocking the bathrooms. They are selling their shelving, cases, racks and ladders; everything. Not even a computer to look up who wrote Lonesome Dove. Now what was I to do stranded there with the baby's diaper bag. C'mon Melissa, get creative..what do I have? BABY WIPES! Oh, thank you, thank you, thank you. I looked over to my right and even the tampon recepticle had a sticky note on it, SOLD. Really? I wonder who felt like they needed a used tampon bin?

Regardless, I washed my hands (yes they still had soap)and got outta there to do my exciting shopping.

Goodbye corporate Borders. I think I may miss you.

Thursday, September 1, 2011

tuning in....

Have you ever been waiting for that big game (insert favorite team here), or needed to see that sitcom. Or maybe you needed to know who won American Idol or Survivor? OK, so you turn on your TV, get it to your station....its the right time, and damn! the reception is bad. Really, bad reception? Isn't this the digital age? Things should work. You catch glimpses of your teams offensive plays, then the screen freezes in digital cubes, raining on the image distorting the play. Did they make the touchdown? I could go on and on here, but you get the picture....right? (no pun intended)

This is what it is like somedays trying to get my sons attention. I'll find myself asking him over and over"do you want to eat beans or quiche?"
When he was younger my Mom would say "don't repeat yourself. People always say things twice when they speak to kids. Just say it once". I understand this approach. It is to teach kids to listen.

Auditory processing malfunctions in some kids. The words get jumbled up in their head...words coming in, and words intended on coming out. Some kids with autism never speak, but actually have a lot to say. Many non-speaking kids are using Ipads to communicate and are able to go to school. Were lucky, our kid speaks.....a lot. But listening is a real challenge.

In Animals in Translation, author Temple Grandin (an amazing woman living with autism) describes it beautifully for us. Since our brain; our species is capable of higher functioning such as reasoning that we have to sacrifice ancient survivor skills that we don't need since we have evolved from caveman. For example, any given time during our day we are not paying attention to the changes in lighting, or the drone of traffic, or hearing all the appliances humming.

Sit there if you will and listen to all that ambient noise. Now feel the clothes on your body and the breeze on your skin. What about that cookie you just tasted or the headache you're having. Imagine the lady next to you having on too much perfume.
If you were inundated with all this stimulus and could never turn it off you would go mad. Our brains have to filter this stuff out so that we can focus on higher levels of thought.

So I try to go easy on my kid, knowing all this. Still in order to function in this society, or to simply be able to listen in school, I have to teach him listening skills. It's hard. I'm ignored a lot. It's frustrating. For years he didn't respond to his name very well and he didn't speak until 3. It's all about tuning in. One day I bursted out crying when I was able to play with a child and he was tuned into me. Conversing had a real flow to it. It wasn't strained. It was so easy! We'll get there one day. It'll just take a bit more work.

Tuesday, August 30, 2011


Well, we have decided to disclose his diagnosis to our insurance company so that we can continue to get him therapy. This is a big deal for us, disclosure. Not because we are not open, but once you disclose the information, it is no longer in your control. For example, once our insurance carrier knows they will share his info with all future insurance he will have. Also, the school will probably know at some point and it will follow him through high school and into college even. I hope he is never discriminated against, or denied coverage based on pre-existing condition.
As a parent you try to make the best decisions for your kid. You have to weigh current benefits against future needs. The future is a risk and a gamble. But if in the future insurers decided to deny benefits to individuals with ASD based on pre-existing condition there would be a lot of outcry since ASD affects a large population.
You want to give your kid every possible opportunity to succeed in life.

Friday, August 26, 2011

priceless pal

We have a dinosaur living with us named Russe (pronounced roo-see). She loves to hang out with Calder and unlike Calder, Russe likes to try new foods and she even eats vegetables. She is after all a brachiosaurus. She likes her hair washed and is generally easy going. She sat at the foot of Calder's bed probably two years...waiting for a little boys imagination to spark. A part of development often never attained in those with autism. Or attained by many hours of therapy and prompting. Many times I would say to myself "oh I should get rid of this stuffed animal. Its taking up space, collecting dust. He'll never play with it. He doesn't do pretend play. He is cerebral and very literal".

When a child hits a milestone it is a happy and fun occasion. E. had her first giggle yesterday, what fun. But when a child misses just about every milestone by 18 months or so, attaining a milestone is joyous but also it is a huge relief.

Thank God for stuffed animals. Thank God for dinosaurs. Thank God I never got rid of it. Thank you Russe. You are priceless to me.

Thursday, August 25, 2011

38 minutes of opera!

We made it through the parking lot and into the house to find our seats. Things were going as good as they could. Whew. After sitting for about 5 minutes Calder says to me, "we have to get out of here". If he can just hang in there until the music starts he'll get interested. It's a very visual opera.

After we are about 5 minutes in he says again, loud enough for a few of the people sitting around us to hear,"we gotta get out of here". I whisper to him let's wait 5 minutes until we see Kitty (the main character ). He says don't do that. Don't tell me a secret. Ok scene change, come and capture my borderline restless 5 year olds attention.

Going great. He is recognizing the characters we have shown him for two weeks now. He sits on my lap, which is sweet...another 10 minutes go by. I notice that he is really paying attention. Cool. Relief. After 38 minutes from the moment the orchestra started he turns to me again saying "we gotta get outta here". I say "are you sure you don't want to see just 5 more minutes...see the savage in his cage?" He says "absolutely". Well there it was. The kindest, whispered words...I had to respect that. I had told myself before that I would not force this on him. So after 38 minutes of opera we went home.

the letter "P" blows out candles.

Who knew that blowing out candles would be scary. Our son is not a big fan of birthday parties. He has a lot of anxiety when it comes to going to a friends birthday. I've asked him what it was that bothered him. He tells me "I don't like the happy birthday song". Hmmmm. And the candles and the cake....he does like the party hats though!

So in a few days he will have his 5th birthday party that he is in charge of. He picked which friends he wanted to come. He picked his theme. And he decided that we will make a cake for his friends to eat (oh yeah, and he loves to bake).
While a friend was in town recently Calder got to see her blow out candles. Many kids love to blow out candles. Calder is afraid of the heat. He would watch her but from the other room.

Calder loves the alphabet. Many of his favorite games involve playing with letters. When we found out that sounding the letter "P" can actually blow out a candle he was happy as a lark! We've also found that "qu" also blows out candles. But most letters will not blow out that makes P and QU pretty special.

Wednesday, August 24, 2011

what this is

So I do sit up at night after the kiddos are tucked away in bed. It is the only quiet time in our home, as many parents would say. For me, this is a place to be during this quiet time.

Tomorrow night I will be attempting to take Calder to his first opera. Since hubby is the TD at the SFO we felt like this was an opportunity not to be missed. We have been preparing for weeks by creating social stories. We even have a huge map of the house seating chart and we can find exactly where we will be sitting. We've arranged to be sitting by ourselves, away from the main cluster of folks. Also hubby has made a condensed, kid size story of the opera we are going to see "The Last Savage". It has drawings made from designer renderings and set draftings. Well see how this goes.

We have learned how to "aim for success". This means if we just get through the parking lot and even to our seat then we have "succeeded". Nevermind actually getting through an entire opera. I know I didn't get through my first opera. We have learned that you just have to let go of expectations. Because that is what they are..."your" expectations, often not representing any reality. This can cause great pain..when you think something should be a certain way and it just isnt going to be. I have learned that I do not get to be the parent I thought I would get to be, instead I am the parent I need to be.

Ever since the moment a child is born we have expectations. It is a natural thing. But as we get to know that child, ASD or not, we find the specifics of a personality. Sometimes our dreams for that child, or for ourselves as a parent, fly out the window. Some more than others.