Tuesday, June 28, 2011

The Summer Alex Plan

I may just be deluding myself, but here is the plan for the summer for Alex.  Learning to initiate socialization.  Alex has learned so much over the last few years, and this is one of the final keys to a bright future.  So far we have taken on: emotional ties to safe adults, emotional regulation, communication with adults, friendships with a few select peers, activities of daily living- dressing, bathing, eating, brushing teeth, zipping zippers, etc., navigating around and responding to same age peers, typical classroom participation, regular school work, and empathy and understanding emotions.  Taken them on, and still working on most of them, with general great success.  So much success that it is time.  It is time for him to blossom into initiations.

Initiations?  Sounds so clinical, but it is key to opening the whole world.  Without initiation he is dependent forever on assistance.  Without initiation he cannot be truly creative.  We may be jumping the gun a bit, as he is not a really great copier, and copying comes first on the developmental ladder, but he's his own man so why not.  He so wants to be around his friends that I can't help thinking it is time.  But how to do it?  He can initiate with his closest and safest friends, so how to broaden that out?  Make more kids safe?  With the help of Congdon Creek Summer Camps.

The camps are perfect.  Geared to 3-9 year olds and based out of the preschool he attended when he was 5, they play all day long.  They play, and hike, do projects, and play some more.   It is a gold mine of communication opportunities.  The staff is top notch, and they handle everything that comes along with style and grace.  His particular teacher also has a special education degree, and was his teacher at 5, and also did her internship in his 4 year old ASD classroom.  Can't get much more perfect than that.  When I met with the staff before summer to talk about encouraging initiations, and also good motivation strategies and using multiple cues with him, they didn't even blink.  They do all that and more, on a daily basis.  Including promoting positive social skills with all the kids. Heaven. 

Alex has been at camp for two weeks now.  He has met up with old friends at camp, and made new friends too.  The staff keeps me updated on his progress, and he is making gains every day.  They are prompting and he is responding...and initiating.  He does not just do his own thing anymore, and it is not a royal fight to get him to interact with the kids.  He is participating fully, and developing his own style.  He is king of the monkey bars, and loves to read with and to other kids.  Yesterday he spent much of the morning playing "puppies" with one of the girls, barking and snuffing noses.  And the other part of the morning he was discussing Kung Fu Panda 2 with one of the boys.  Ahhhh, Bliss. 

What you have to understand is that when Alex was 5 he could hardly be in the same room with the other kids.  He maybe talked to two kids on his own all year.  He had a paraprofessional with him much of the time, yet could not connect.  He was very handsy with the kids, it was his only way to communicate.  He would roll on one girl that he particularly liked.  He always looked like a deer in headlights.  The staff put in major work just for him to participate and partially work on projects.  His desire to be with kids blossomed that year, but there was very little appropriate interaction.  He was in his own orbit, getting closer and closer to the others, but still miles away.   It is a joy and a delight to see how much he has changed, and to watch him fully participate.  Yesterday he asked his dad if they can make a chocolate cake for the staff... he happily agreed.

So, there is the meat of the Alex summer.  Four days a week he is at Congdon Creek Summer Camps.  The rest of the time is dedicated to playing outside, camping trips, acting class, kayaking trips, play dates, reading, math, writing, stories, baking, eating good food, biking, building a rocket with his dad, and putting the coffee on in the morning.  Santa Barbara may not be in the cards for this summer, but with the help of their ideas (initiations being a big one) and books, I think we will do alright.

Friday, June 3, 2011

Locked In

If you know any Autistic kids You Must Watch This

Wow, this is it in a nutshell.  I cannot help but think of Alex first when I see this.  Granted, this girl has a much larger challenge than Alex, but challenge is challenge.  It is profoundly hopeful, and also sad.  "Never give up.", they say.  That is much easier said than done.

My heart is cut to ribbons every day with my little guy.  Every day.  Cut to ribbons with fears for the future and the past.  Fears that it will not turn out all right.  Fears that I did things very wrong in the past that can never be undone.  Fear of the darkness that gathers at the edge of consciousness and doing.  Fear that we are not doing things right, right now, and will lose our way in the future.  When I see behaviors that are outside of the norm, I fear he will never be truly accepted.   Or, more accurately, that since he IS accepted now and has many wonderful people in his life, both little and big, perhaps that will vanish in the future.  The fears gather, and multiply, and prowl just outside of my consciousness.

And then I hug my Alex.  Or he gives me a kiss.  Or I pick him up and give him a big snuggle.  Or he shows me something, anything.  Or I look at his picture, or artwork, or think of his brave little self.  Any of a hundred things that happen every day, and my heart is healed.  Cut by fears, healed by love.  Love shining out of him, and through me too.  Love of others who hold him dear in their hearts as well. 

It is a rough road, having a kid with a disability.  Rough indeed.  But the rewards are great too.  Amazing.  More than one would ever expect, until you know a brave little soul like Alex.   Or even one quite different.  Fighting a different battle, having different challenges.  All of the brave kids.  Some of them still locked in.  Locked into their challenges, into behaviors that mystify, into worlds only they know.  "Never give up.", it is difficult indeed, but this girl, Carly, is showing us another way to follow that most difficult path.   And the rewards are clearly great.