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 band. I 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.
I know you hurt. I hurt for you. Writing your “me” story is a great idea. You can honestly write all the things you would never utter out-loud. Say every thought…no matter how vile it seems…it will be like vomiting the sadness, anger and horror from your gut. Love you, Amy. I am so glad I met you!
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You are so inspiring and your determination to get through each day is amazing to me. You are strong and I pray that the hurt goes away some day soon. You are so articulate in your ability to express what you’re feeling that it is truly a gift to the reader with each and every blog. We feel your emotions through your words and we feel as if we are on this journey with you in a weird sort of way. I feel like I have some investment in this whole surreal existence of yours and that may sound strange to you but that is what you do for your readers. You are a great writer and I truly believe if you write a novel, it will be a best seller and that is how you will be able to advocate for Jonah and the whole autistic community. Keep on writing, Amy, and keep on living each day one breath at a time, one smile at a time, and one happy memory at a time.
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Through all of your pain, please know that you are NOT alone. I have been a reader for some time now and I am consistantly in awe of the strength that you exhibit. I have two children on the spectrum and I use your blog to find my own strength.
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Hi, Amy – It’s Dave Tyler’s wife, Carrie. I think he’s told you we both subscribe and faithfully read every blog post, but I just wanted to write and add my support. I admire you so much and think about you and Jonah often. I’ll be sending happy-haircut thoughts later (or, you know, get-through-it-as-painlessly-as-possible thoughts) and you will have some far-away support and thoughts with you through this extremely difficult month.
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Been reading through my feed but haven’t gotten a chance to get over and post. Stay strong. I am thinking of you.
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