IndiGlow - The Ordinary Illuminated

IndiGlow - The Ordinary Illuminated

Sensory Issues Suck

Tuesday, December 17, 2013

Well, we almost made it to the Christmas program this year...almost.  


Our high-functioning autistic son has only agreed to do it one year before, and annually this event brings him incredible stress and frustration as they prepare and practice from the moment they return from Fall break in October, until the big day of the whole-school performance.  

I was pleasantly surprised (although cautiously optimistic) when he announced he was going to participate this year because his sister, who is now in Kindergarten, was going to perform.  He wanted to be there as a support to her, which melts my heart.  Despite his sensory & social difficulties, he takes being a big brother to his 2 sisters very seriously.


I bought him a new outfit, and of course I washed it first.  I learned long ago that if new clothes aren't washed before wearing, he breaks out in a terrible rash.  (A whole day of school was ruined and miserable the day we discovered that.)  

He looked so handsome in his black pants, white shirt, and Harry Potter tie, and while my 5 year old sweet girl was "embarrassed" I know she was excited to dress up in her pretty holiday dress and stand next to her BFF from school at the performance.


As usual, we were running a little behind (our youngest, who turns 4 tomorrow, is a wild-card to say the least).  We never know when she's going to have a fit or completely melt down, etc.  Getting these 3 and ourselves ready is a bit like herding cats, which most parents can relate to I'd imagine.  But, somehow we miraculously managed to get everyone looking pretty darn good and out of the door with just enough time to grab a quick bite of dinner on the way.  


And then, it happened.  Half-way through our sub sandwiches he started to itch and twitch.  I should have known...what a rookie mistake to not have him put a t-shirt on beneath the new white collared shirt!  Within moments he was freaking out, completely miserable, and ready to rip off all of his clothes right then and there at the restaurant.  Keeping calm, I packed up everyone's remaining food items, bundled the girls back up, and got to the van so he could get some relief.  I thought I'd take them all home and drive my pretty girl back to the performance myself, but there wouldn't have been enough time.  

It was a horrible moment on so many levels.  I know he couldn't help it, and I am still feeling crushed for my girl...I know it hurt her feelings not to be there.  I know she was embarrassed this morning to go to school. She cried this morning and I held her and kissed her tears away...knowing there is no way to make up for that lost moment.  


I wrote notes to the teachers, trying to explain, but my heart is broken.  Sensory issues are so difficult - not only for those who experience them, but also for their loved ones.  We're always learning, and I will never forget the damn t-shirt again.  In the future, we'll drive separately, so there will be time for a plan "B" when needed.  I can only plan and look toward the future, as it isn't useful to dwell on the past.  

But just for today,  I need to grieve.  I grieve for the difficulties my son faces, and I grieve for the effect it inevitably has on his sisters lives.  I'm sure there is a silver lining...there always is....but I can't look for it at this moment.  I need to get on my yoga mat - find my breath and allow my own tears to flow so that I can release this feeling.  


Namaste,

IndigoGrrl

Finding My Center After the Storm

Saturday, September 07, 2013

I'm watching Turkey Buzzards circling over my backyard as I sit and work in my office on this peaceful Saturday morning.  Through the other window I see an intricate spider web attached to the eaves of the roof swaying in the gentle breeze.  My 3 children have spent the morning playing, disagreeing, making-up, and playing some more.  There is such peace and fullness in my heart/mind at this moment.  I'm reminded of the word purnam, or "perfection," which, in this context, does not mean what we might think.  I am full...I am whole...I am perfectly content in my spirit as I observe the fluctuations of the world around me.   


After the longest Winter of my life (which bled into the Spring and even early Summer), I am refreshed to find the ground beneath my feet again.  It felt like a metaphorical hurricane swept through my life and left me completely demolished internally.  

After a month of testing in January, my son was diagnosed with High Functioning Autism.  While I had suspected this for the 5 years prior to his diagnosis, there was still a part of me wishing they would tell me I was wrong on that emotional day.  

The day before I drove to Chicago for this news, I learned that my father was diagnosed with another form of cancer (he had beat Prostate Cancer years before).  My relationship with my Dad has not been a close one, and so I was left with a mixture of feelings, including grief and fear.  

It was a hell-of-a week, and I took a few days to try to assimilate all of this news.  And then...that following Friday as I was waiting in the pick-up line at school I received a terrifying call from my mother.  She was having a stroke!  I spent the next week in and out of the hospital with her...trading shifts with my brother as we worried what would happen next.  Once released, she came to live with me for a few weeks so I could care for her, which included sorting out all of her new meds, helping her learn to give herself insulin shots 4 times a day (for her out of control diabetes), cooking heart-healthy meals, and more.  I was happy to do it, but I felt the weight of the world on my shoulders.

By the grace of God, her stroke did not leave her completely handicapped.  While it certainly affected her, with time & rehab she regained most of her speech, balance, and abilities.  It was life-changing for her (and for all of us who love her), and she made incredible lifestyle changes in an effort to avoid another stroke.


Now, months later, we're all doing pretty damn well!  My father & I have become closer than we've been in years, and his cancer is under control at the moment.  My mother lives independently with a helper now who comes twice a week, and she continues to be stronger everyday.  My son, well...of course there is no cure for Autism, but we've been able to get him a 504 at school, which means he is protected for the rest of his educational days.  I've finally been able to talk to him about his diagnosis, and together we are learning how to navigate this unique path God has blessed us with. 


Everyday there are new challenges to face, but this is the nature of human existence for all of us.  For everyone of us life is going to be full of heartache, scary moments, and metaphorical hurricanes that make us feel defeated.  But, the beauty is that there are also moments of deep joy, moments to celebrate, and remarkable miracles which build us up again.  All moments pass, change, ebb & flow.  

I'm eternally grateful for the skills my yoga practice has given me.  Because of these tools I am able to find my center...remember to breathe...and accept that I am not in control of the world around me, but I can control how I react to it.  With a very glad and grateful heart, I am thankful for this moment.  


Namaste

<3 IndigoGrrl


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