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.
I love you, dear. You are so strong.
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Thank you Leah, and all of you. I don’t feel strong but you guys make me feel that way!!
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This is such a beautiful post Amy. Absolutely beautiful! I feel a little bit calmer in my heart for you just reading it. Thank you for sharing your story. I am so certain there are others who are reading your blog and gaining strength from you. One step, one star, one attitude at a time… that is how we make our difference!
Here is a poem from a post to which you might relate… It is about my experience with my son: http://30daysofautism.wordpress.com/2011/04/15/if-i-didnt-have-you/
If I didn’t have you
My eyes would not be open
They don’t have you
can they be expected
To just know
Your perspective(s)
Your experience
Has altered my world
And now
Together
We are changing
The world
(Maybe just a little piece of it)
And making a difference
Leah
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Thank you Leah – it’s beautiful and mirrors so much of what I feel!
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Beautiful post. Thanks for your kind words. I will be wishing for the best for you and Jonah.
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My best wishes to you all. The social story is a great tool for Jonah’s transition.
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I just got back from two days working on my next home to find your great post. Congratulations on touring Anderson for a second time without tears. It seems like you have turned a corner to focus on Anderson as the answer to a prayer for Jonah and not so much as the place that is snatching your beloved son from you. Keep on making a difference one little deed at a time, buying the stuff Jonah needs, reading the social story to him . . . Keep on keeping on, my friend.
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I read with tears tonight…my own heart aching for you. I have a 7 yr old on the spectrum and we’ve had to hospitalize him twice in the course of a year. The first time for a month and the second time for a week. It was the hardest thing we’ve ever done. So I can only imagine what you are going through right now. Even though we don’t know each other, my heart is with you during this time. I wish you all the very best!
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Hi Amy!
Loved your “Normal is a Dryer Setting” catchphrase, so I stalked you here from a comment you’d left over at Year of Kindness. I am a special needs Nanny by passion and trade, and used to live in Latham, NY. I dearly miss life in the Capital District, but decidedly do NOT miss driving on I-87!!!
Hope you won’t mind my archive-diving here in near future. Your son so reminds me of a particular boy I cared for a couple years ago, and your struggles purely resonate with me, as someone who’s “been there”- even if peripherally. One thing I’ve learned, is special needs families simply MUST have a network/community of people for support, and feedback. Please, feel free to contact me anytime, for any reason. ( I do hope you’ll consider this random invitation from an Internet stranger as genuine, for I truly feel I’ve found my life’s purpose in my work, and strive to reach out when and where possible.)
So glad to have found your blog, can’t wait to learn even more! 🙂
Kindest regards,
MaryPoppinSertraline
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