Friday, February 24, 2012

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 in about 5,000?  And what then would be the statistic of those kids who actually get through it with some level of 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.

Thursday, February 2, 2012

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?'