Monday, December 26, 2011

'Tis the Season...

...for growth!

As parents, we all measure growth in our children.  Physical growth, of course, but also emotional and educational growth.  I'm a teacher, which means I am in the business of constantly analyzing educational growth, and of course I examine my own child with the same analytical eye.  The difference between me and other parents is that a success for Ben in my mind is a daily expectation for other kids; events that are a huge accomplishment for Ben are not a big deal for most kids and are not reason for celebration.

One of the reasons I began this blog was to have a place to celebrate Ben-- his uniqueness, his strengths, and his growth.  So here goes:

Ben's fine motor skills are severely delayed.  At age 4&1/2, his were assessed at 18 months.  That was hard to swallow.  We work on fine motor skills.  We string the beads and play with the blocks and the Play-Doh and color with the triangular crayons just like we are supposed to, and we started doing that right when we were supposed to, but his fine motor skills are still delayed.  It's one of the areas Autism shows up the most in my child.  At 5&1/2, he still cannot write his name unassisted.  BUT!  This year, he was able to place all of the tiny candy pieces on the cookies and he placed all of the candy on the roof and walk of the gingerbread house and all of the little dots on the gingerbread man and tree!  Last year, the cookies he decorated looked nothing like that.  I so should have taken pics last year for before and after, but trust me, the difference is huge!

Do you see that glorious mess?!  Musical instruments, pirates, firemen and fire truck, dinosaurs, LEGOs, etc?  Last year, Ben obsessed over his musical instrument toys.  And that's all.  That's all he touched for days.  This year, less than 24 hours after opening his presents, he has played with almost every single thing he received, at least for a few minutes.

In retrospect, one of the early signs of Ben's Autism was his tendency to obsess.  Lights and fans had to be on all the time.  He began pretending to cook at age 2; everything became a spoon and pan and all he wanted to play with were spoons and pans.  At age 3, this obsession changed to musical instruments.  Everything became a musical instrument, he wanted to spend hours in front of You Tube watching people play musical instruments, and all he wanted to play with were musical instrument toys.  Occasionally, he would play with a dinosaur or a car, but after a few minutes it would become a "dinosaur flute" or "car harmonica".  He began speaking at 3&1/2 and a few months after he spoke his first (retained) words, he could name over a dozen musical instruments.  Now he can name them all, even lutes and balalaikas and other things I did not know existed until Ben became obsessed with them.

A few months ago, an assessment by his private OT showed this might be changing.  She reported that he no longer reverts to pretending to play an instrument in order to avoid therapy.  We began noticing that he played with LEGOs and other things as much as his instrument toys.  And now I am spending my morning joyfully watching him move from toy to toy: fire truck to pirates to drums to Legos to binoculars to pretending to be a guitar-playing pirate.

I do not have a picture to accompany the next benchmark, but it might just be the most important one.  Ben made it through all of Christmas day--Santa gifts, Mommy gifts, gifts at my parents' house with grandparents and aunt and uncle, and the family gathering at my aunt's house with only ONE instance of a mini-meltdown (wanting to be a pirate instead of opening the rest of his gifts) and one instance of isolating (in the back entryway about 8 feet from the rest of us)!  It may not seem like a big deal, but it is HUGE!

Another early sign of Autism that only registers as such in hind-sight is his need to isolate himself from noise, crowds, and over-stimulation.  On his 2nd birthday, Ben freaked out.  He cried, screamed, went into his room, and refused to be a part of the party.  He did not open his gifts.  He did not blow out his candles or eat his cake.  He sat in the recliner with his dad reading books until everyone left.  Then he was fine.  I blamed it on not having taken a nap and on being two in general, but about 6 months later at my dad's 60th birthday party, he went as far back into my parents' house as he could and stayed there by himself.  He would have nothing to do with the party or the people, even family members he knew well.  He just wanted to play with a pan and a spoon by himself, completely away from the crowd and the noise, and attempting to draw him out led to a colossal meltdown. 

Yesterday, I watched him negotiate his day and the commotion and disruption to his routine mostly with ease and was so relieved there are no words to describe it.  He occasionally sought pressure to help him deal with sensory overload, but other than the one example of resisting opening packages, he handled it all like a champ.  I have every hope and reason to believe that he will continue to grow and learn to navigate the world, and I am so happy for him that he was able to enjoy the holiday instead of hide from it.

I hope you all had a wonderful holiday celebrating everything you celebrate, and I wish everyone a peaceful new year full of happiness and growth!

Sunday, December 11, 2011

You Can Do Anything

A few weeks ago, a coworker sent us all the link to a short film, The Butterfly Circus.  It's one of the most inspirational things I have ever seen.  She showed it to her students on one of our "college days", I suppose to inspire them to do the hard work that earning a college education requires.  And I can totally see that.  One of the most important beliefs to have as a teacher is that your students can overcome any challenge and "do anything".  I believe it.  I have seen it.  And I know I will see it again.

Of course, my precious boy is always on my mind and in the center of my heart, and he was the first person I thought of when I watched it.  I have always been focused on the idea that Autism should not and will not stand in Ben's way.  I am determined not to let it limit him and his potential to do anything he wants.  I know that he can and I believe that he will.

The film is 20 minutes long, but it is completely worth your 20 minutes.  I promise.

The Butterfly Circus

Sunday, December 4, 2011

Unsolicited Advice

Something happened a few weeks ago that I fully intended to post about but didn't have the time to do so, which is the story of my life lately.  It has sat there in my brain, kind of hanging out for awhile, and every time I focus on it and really think about it for a moment, I get worked up about it again so here I am.  That's partly because an event like this is very much a part of the experience of raising a child on the spectrum, a child with any kind of special needs, and quite possibly any child at all.  It's also partly because it's an example of how raising Ben has changed me as a person in many fundamental ways. 

A few Saturdays ago, Ben and I went to the local super center to do our grocery shopping.  Such an errand creates a medium-to-high level of anxiety for me because I don't know how Ben is going to handle the noise, crowd, and being stuck in a cart for up to an hour.  I place it on the picture schedule so he will know ahead of time, discuss expectations and what "big boy words" to use if the store is too noisy or if he needs something, and I pack fidget toys, a juice box, snack, and mints in my purse to make sure he has the distractions and comforts he might need.  It's never just a matter of getting in the car and going, as it always requires preparation.  Sometimes he handles it perfectly well, sometimes he handles it mostly well with a few outbursts, and occasionally he screams the whole time and punctuates that screaming with throwing things.  There is no way to predict the latter and even though I always try to head it off, sometimes there is no way to do that either.

On this particular Saturday, he did mostly well until we were in a particularly crowded aisle of chatty people, and I swear someone cranked the Christmas music up a few notches.  Ben lost it.  "It's too loud! he screamed, while hitting the side of his head with his hand and simultaneously kicking off his shoes.  He swiped at me, threw a roll of paper towels out of my cart, and howled.  I covered his ears with my hands and began telling him that it would be okay and we could put the hood up on his jacket to help, when some lady I have never seen before in my life wearing a horrendous cat sweatshirt stepped up to me with a condescending smile on her face, and said, "Your son is throwing a tantrum."  I just stood there while my jaw dropped.  My child was throwing a tantrum?  No kidding, lady!  She continued, "This is what happens when we try to be our child's friend instead of his parent.  I recommend strict consequences for behavior like this."  And then she took a step back and looked at me expectantly.

I don't know what the hell she was expecting, but I'm sure it wasn't what was going through my mind because first of all, did she really think I was not aware that my child was throwing a fit?  Did she really think I needed that pointed out to me while his shoes were in the floor and he was screaming?  And second of all, who the hell asked her?  It's not like he is the first child to ever throw a fit in Wal-Mart, and the fact that he did indeed throw a tantrum does not mean he does not have consequences for his behavior.  Having sensory integration deficits is not a chosen behavior, and that's what I suppose I should have told her because she was clearly clueless that he has Autism and probably has no idea what that is, but my brain was so full of profanity in that moment that my filter (which isn't a very good one) was working double time to control my mouth, and instead all I could do was glare at her while retrieving Ben's shoes.  Thankfully, some other lady quietly put my paper towels back in my cart (if I had picked them up myself, I probably would have thrown them at the cat shirt lady), so I pulled Ben's hood up over his head and pushed my cart out of that aisle as quickly as possible.

This is not the first time such a thing has happened.  Ben and I have been stared at and whispered about (and even laughed at) at restaurants, parks, Mommy and Me gymnastics, etc, but never had I encountered someone who would dare tell me I was doing it wrong and that they knew better about my own child than I did.  Part of me regrets not telling her off and part of me wishes I had been able to stop and educate her, not only about Autism and my child but also about that judgemental cloud she lives under that caused her to say what she said and make a rough moment even worse, for all the good it might have done.  When I say that Ben changed me, I mostly mean he changed this.  Not that I was ever exactly the cat shirt lady, because I never would have told someone how to parent their child, but I would have thought it.  I would have felt critical and I would have thought, "Parents don't discipline their children."

I am no where near perfect and never will be, but raising Ben has taught me that there is always another side to things; that living under a critical cloud blurs my own life.  I have had to learn to look at my child in a more positive light and to believe that he can overcome his obstacles to do whatever he wants and be anything he is willing to work toward.  I am able to see my students in a different light as well, with that same hope for possibility.  There is more sunshine in my life now, and I am a far more positive person than I was.  As frustrated as I get with Autism sometimes, I needed Ben.  I needed the change.  

In response to the rude cat shirt lady, a friend suggested I get Autism Awareness cards to hand out in similar situations.  It's a good plan and a good reaction, much more acceptable than throwing paper towels or unleashing unfiltered profanity.  I browsed them online and didn't find any I completely liked, so I borrowed bits of a few and added my own line.  Below is what I came up with.  Feel free to use the wording if you have a need:

My son has Autism                                         
When a person with Autism feels overwhelmed
by his sensory integration deficits, he may behave
in an unpredictable manner.  His current
behavior is a reflection neither of his intelligence
and worth, nor of my parenting.  Your patience
would be appreciated.  For more information,