Self Care: A Public Service Announcement

In the autism/special needs community there has been alot of discussion recently over two events.
One is the “the pink letter”  from a “pissed off mom” proposing her neighbor euthanize her grandson since he is “such a nuisance” and will “never hold a job”.  The other is the sad story of a fellow blogger and tireless advocate, Kelli Stapleton who found herself in such a dark place she saw no other option than to try to take her life and the life of her daughter.

I resisted any public comments of these on Jack’s page  for several reasons.  In the case of the pink letter, it was because it was EVERYWHERE.  It didn’t need to be addressed by me and the person that wrote it was getting enough attention.  There didn’t need to be anymore.  It was wrong and heartless.  We all knew that.  Nothing I had to say would have  added anything to the mix.  In the case of Kelli Stapleton, what COULD I say?  None of us will EVER know what happened in that moment.  Perhaps she is bipolar and trying out new meds and snapped.  There are elements at play that NONE OF US will ever know.    She was stressed.  She was tired.  She was in a dark place.  She snapped.

But these two seemingly disparate stories serve to illustrate something so very crucial to us who are caretakers of those with special needs (and I use that term in an extremely broad manner) – SELF CARE.
It doesn’t matter if you are the parent of a child on the spectrum, or with a rare genetic disease,  or a severe disability, or the caretaker of an aging parent…….  The most important thing you can do for those in your care is:
TAKE CARE OF YOURSELF.

I have strived to make this blog and Jack’s page as positive as possible and still be realistic.

Is living with Jack a joy and a blessing?  You bet it is.
Still– there are there days that I am bleary eyed from lack of sleep.  There are days that I am beyond tears with frustration.  There are days that it takes all I have to get up and do it all over again.

But I have learned to take care of myself in even the smallest ways to keep going and keep my sanity.

My husband and I communicate.  We provide each other with time away from the house.  We get away as a couple (THREE hours once a week!).  But most importantly…….we do little things to keep our sanity and our health.
For me, its small things like the occasional hot bath, Word with Friends, and sewing/crafting.
For Clay, its sitting in the backyard admiring the view, Fantasy Sport Leagues, and reading.

What these small things provide for us is a little food for our soul.  Small breaks in the routine that allow us to function properly.

What would I have done if I received that letter?
I would have been pissed.
I would have been distraught.
I would have wanted to seek out the person who wrote it.
But once the initial shock wore off, I would have dismissed it.  Shredded it and burned it– gotten the nasty energy out of my home and moved on.  I don’t  have time to focus on that type of negativity.  And it can only serve to be cancerous in my caring for Jack.

What about reaching that dark place?
I would like to think that I am strong enough with enough support to not go there–
Which is the purpose of this blog post.
I urge everyone of you who reads this– special needs parent or not.  If you are in the position of caring for someone– ANYONE– remember that you need to take care of YOU, too.

It needn’t be big and complicated.  It just needs to BE.  My sewing room is set up so that I can get in and get a small amount of wok done at any time.  Find those things that feed your soul and do them:
Five minutes of stretching.  A few minutes of crossword puzzles.   A hot bath.  Let go of high expectations for the state of your home.   Keep a list of people you know you can trust to call.   And if you start feeling like everything is too much?
STEP AWAY
CALL SOMEONE
BREATHE DEEP

Let that moment of despair pass.

I also suggest sharing and bookmarking this site  courtesy of the Post Secret community.

I thank you for reading this.  I thank you for taking the time to consider the ideas I have put forth.
I thank YOU for whatever work you are doing for someone you love.

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For your consideration…..

I am most honored to be a guest blogger over at
FIND MY EYES.  This is a stay at home dad with an autistic son named Jack.
Hmmmmmm THAT sounds familiar!

This month he focused on AUTISM AWARENESS month with a bunch of different perspectives.

I highly suggest following this fabulous writer and his journey!
In the mean time, not only check out MY perspective, but many other guest bloggers as well.
Theres a light of light shinnging over there!

Working my way to unemployment

EDITORS NOTE:
I write this blog entry with full permission from my students mom.  Who is a real peach .  AND a friend.  🙂
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When I became involved in Jack’s life I had a most amazing epiphany:
I had an aptitude for working with special needs.
I had patience.
My ego didn’t get tangled up in the battles.
I took delight in the step by step process.
I had a gut reaction and a clear visions as to what needed to be done and how to do it.

I went from working an office job to working in an early intervention program called PALS.

Oh how I loved it! Everyday I worked with these beautiful children who saw the world oh so differently. Who had quirks, and charms, and eccentricities.  Who were brave, funny, and sometimes baffled.
I met the most amazing teachers and parents.

There was one particular child who was ready to transition. He had aged out of our program and SHOULD be in a regular kindergarten class.

Could he do it?
Could he handle it?

Yes.  Most definitely.  PROVIDING he had a one on one aid.

I felt a special affinity for this child.

Why?  Who knows?
Sometimes you just “click” with someone.  He is smart,  funny, charming and some days:
TOTALLY in a world that has nothing to do with this one.  🙂
I was able to identify triggers, learn how to calm him, soothe, wait him out, and tether him back to here and now.
And so, I chose to leave the  PALS program  and follow this child to the NT classroom environment.

This would mean a significant decrease in pay.  AND forging the way since this particular school did not really “do” one on one aids.

But I believed in this student.  I BELIEVE in this process.
And so I went.
I was there to decompress, to run interference,  to translate,  to guide.  I went in armed with icons, a small white board, daily sticker charts, and other tools of the trade.
I’d love to tell you it was smooth sailing from the start, but I cannot.
I CAN tell you that there were days that I was calmly sitting outside the classroom with my student as he had a meltdown………that went on and on.
There were days that I would get “compliance” by hand over hand for certain tasks.
There were days we BOTH went home exhausted.
And yet there were days when he drew a recognizable picture and CLEARLY wrote the word for it.
There were days that he addressed his table mates by their name and not “girl” or “boy”.
There were days that something inside clicked and the learning came fast and furious.
About three-quarters of the way into the school year, the days of being “on” far outweighed the “off” and he blossomed.

Now “we” are in first grade.  Academically its tougher.  And there have been some hard days….
But it is becoming VERY clear to me–

I am working towards unemployment.
I see so much progress.  I see so much confidence in my little guy.

SO what’s the “point” of this particular blog post?

NEVER, EVER give up hope.
This mom — that I count among the many SUPER MOMS I have met working in a special needs environment– has been tireless  in advocating for her son.  She has had many a sleepless night wondering  what the next day will bring.  She has worried  and prayed.  She has researched.  She has listened.  She has hoped and she has wept tears of joy.

There was a day in his pre school environment that I held this child off and on for well over an hour, trying to move pass a meltdown:  compressions, breathing, changing environment, etc etc etc…..just getting calm when SOMETHING would trigger him again and it cycled over and over.
His vocabulary wasn’t that advanced.  His communications skills not the best and now…………

He and I sit  at “second snack” (a decompression time after recess) He takes deep breaths by reaching towards the sky.  We go over his sticker chart/schedule discussing what will come next in his day and we discuss  “Gold card” behavior.
He goes back to class and writes and chats with his classmates.  When things become too much for him he will take breathes on his own, or he will request to sit with me at a table in the corner where it is quieter.
Sure,  he may obsess about which pencil he needs to write with.  Sure, he zones out a bit when there is too much going on.  And yes…..there is stimming in the classroom.
But you know what?
He’s on his way.

So when you think that there is no way you can get past this current phase, I urge you to remember….

This too shall pass.  Progress awaits on the horizon.

Not JUST for my student, but for ALL of us.

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