Tuesday, May 21, 2013

Birthday Blues

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

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

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

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

Tuesday, March 19, 2013

Calder and Cisco

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

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

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

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

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

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

Friday, January 18, 2013

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...

Sunday, December 2, 2012

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.

Tuesday, September 25, 2012

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.