Posts Tagged ‘social stories’

In preparation for Jonah’s new chapter in life we are (hopefully successfully) going to give him a buzz cut tonight.  Sitter/cousin D is coming over to help Andy and me- and with the 3 of us we should be able to get ‘er done.  Then, if it clears up and is nice later, D and I will take him to friend H’s to swim. 

I am starting to think ahead, beyond the time when Jonah goes away.  Before this I was simply thinking of it as a doomsday clock – that everything would come to an end on August 16th – that there was no point in thinking beyond this day or its inevitable heartbreak (and relief?).

My fantastic therapist, Dr. Alex, mentioned that I maybe should make a (real or metaphorical) social story for ME.  I’ve made one for Jonah and something like one to send to his care workers, but one for ME might help me prepare emotionally – to help me not block out, ignore, or go numb about all of this, which are the defense mechanisms I have been using.

Jonah has been awful at school.  Where usually he would be at camp during summer school, this year he has been disallowed (and, unfortunately, rightfully so) because of his behaviors.  I’m so happy the Anderson School has such a big, nice pool so he can swim.  At Wildwood he has been what they euphemistically call “smearing” almost every day.  YUCK.  Then they have to shower him and clean all the shit off him, the walls, themselves – and probably endure scratches, bites, and kicks in the process.  The dedication of these direct-care workers amazes me. 

It would be one thing if they were making the money they deserve, but the money just isn’t there.  I wish they could have a capital campaign earmarked specifically to raise salaries of these incredible individuals.  I am so grateful for them I want to fall at their feet and sob out my thanks, in my usual over-the-top style.  Instead I will make them gift bags and pray they’ll know, somewhere in their hearts, how much they (and Wildwood) have meant to us and to all the children who need them.  What a wonderful school. 

Here’s Jonah learning emotions, a year or two ago, with his speech teacher, L.  In an earlier post I put up a picture of “excited face.”  Here is “mad face” :

If Anderson is anything like Wildwood I will be so relieved. 

I have received ever-increasing support from everywhere – people e-mailing me, leaving comments here – people who don’t even know me, or who knew me from my childhood.  People I’ve met both virtually and personally who’ve been through this or are going through it…we’re like Sgt. Jonah’s broken hopeful hearts club bandI am not alone.  I am not alone.  It is my mantra and I cling to it like a proverbial rope you climb to get up and back over the cliff.

I yearn for Gina, for she was my sister-in-spirit.  I yearn for siblings, for I have none.  But I don’t want to yearn.   I don’t want to worry.  When I don’t want to worry I think of this Bible verse:

“Look at the birds of the air; your heavenly father feeds them. Are you not much more valuable than they? Matthew 6:26

Stay focused, Amy.  Have faith.  Stay busy, stay optimistic, stay positive. 

And don’t forget to breathe.  When I want to remember to breathe I think of HH the Dalai Lama:

Practice for the New Millennium by the Dalai Lama

1. Spend 5 minutes at the beginning of each day remembering we all want the same things (to be happy and be loved) and we are all connected to one another.

2. Spend 5 minutes breathing in, cherishing yourself; and, breathing out cherishing others. If you think about people you have difficulty cherishing, extend your cherishing to them anyway.

3. During the day, extend that attitude to everyone you meet. Practice cherishing the “simplest” person (clerks, attendants, etc) or people you dislike.

4. Continue this practice no matter what happens or what anyone does to you.

These thoughts are very simple, inspiring and helpful. The practice of cherishing can be taken very deeply if done wordlessly, allowing yourself to feel the love and appreciation that already exists in your heart.

I’m trying; I’m learning.  I’m grateful. 

I just hurt.

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On Friday I reached out to a LinkedIn contact whose description said she was an ASD (Autism Spectrum Disorder) specialist.  She was incredibly kind and has made a social story for me to read to Jonah as he gets closer to transitioning out of Wildwood and into Anderson.

Also on Friday my mom and I drove to Anderson for a tour (her first, my second).  She was very brave about the whole thing and only cried a few times.  We got to see his room, and the bathroom (with a bath tub) is right across the hall from him.  Today I’m going to work on his social story and make a list of all the things I still need to do (get doctors to sign things, give us prescriptions and permissions…buy things on the list I haven’t yet gotten him.  I’m even sending him to school with my beloved GUSTER book bag).  These last 5 weeks are going to go fast; but then again, summer always seems to fly after the 4th of July has passed.

Emotionally I have good days and bad days, just like boo.  It is worst when I approach the cash register with a pile of his towels and bedding or whatever.  One cashier even asked me if I was going off to college – which was flattering, considering I graduated from college 20 years ago, but her question also required some sort of response.  I smiled that just-smile-Amy look I have on my face a lot these days and told her, simply, “no.”

Yesterday M and I took Jonah to swim at my friend H’s house.  Her 3-year-old was there but he was floating around in a pool toy so whenever Jonah told him “bye bye,” H could navigate her boy away from King Jonah of the Pool.  Meanwhile Jonah cavorted, swam around, went underwater, and jumped in about 80 times.  When he was done, though, he was done.

“All ny-yah,” he said (rhymes with pie-yah) which is his invented, alternative way to say “all done,”  and he climbed out, ran down the pool stairs, and started to make for the car.  “whoa, whoa, little boo,” I said as I caught him up in my arms.  After chasing him around the pool deck for 10 minutes or so, I got him dried off and dressed, and we quite literally swam-and-ran.  Five minutes later we’d thanked H, said goodbye to the other people there, and were back in the car, where Jonah promptly smacked my face when I put him in his car seat.  I’d already taken off my glasses, so it wasn’t too bad, as Jonah’s smacks-in-the-face go.  All in all I’d say he did really well there.

M is working on his car today, using instructions from online and the knowledge he learned from his dad, working on cars growing up in the ‘sticks’.  He’s doing stuff 90% of non-mechanics wouldn’t attempt, I think, but what do I know?

M is very supportive to me through all of this, helping care for Jonah whenever he can and holding me when I need to cry about what is happening.

But I’ve found an outlet – a way to turn the negativity into positivity – a method through which I can focus on something good, something that makes me feel like I’m not rapidly approaching the unimaginable age of 42 without having done anything of any real significance.  Now I am changing what I can, where I am, within my means and ability.  Whether this sudden need to do something good is inspired by chance, middle age, or Jonah’s leaving, I don’t care to analyze.

I have always loved this story:

Adapted from The Star Thrower by Loren Eiseley (1907-1977):

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

This story has appeared all over the web in various forms, usually with no credit given to Mr. Eiseley. Loren Eiseley was a anthropologist who wrote extensively. He was the ‘wise man’ in the story, and he was walking along a beach after a storm and encountered the fellow throwing the starfish back.  Sometimes it is a little girl throwing the starfish into the ocean, sometimes a young man, once even an elder.

I want to be a star(fish)-thrower.  Like that lady I found was for me.

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