This morning I met Jonah, J, and P (his transporter/caregivers) for Boo’s retina doctor appointment.
It was raining out as I walked over to the van to greet them, and people going into the building either had umbrellas or were running to get to a dry place. But I love being out in warm rain (and even pouring rain, if I’m at my house so I can go inside and change). Jonah’s like me. He stepped down from the van to the pavement and we danced around in the rain for a minute before going inside. I greeted him with kiss and blue octopus and fruit snacks, and he was in a happy mood. He sat nicely in the waiting room, too.
As we waited in the exam room for the doc, he sat on his legs, facing the back of the chair. Then he lowered his torso and let me scratch his back and give him a little massage. More here, he’d say, moving my hand to the spot he wanted scratched. He even stuck his butt in the air. “You scratch your own butt,” I told him, and he giggled. He does have a sense of humor, my Boo. He asked for kisses on his elbow, shoulder, head, and belly. I tickled him and got more laughs.
He never lets me do this and it is wonderful. Rare like a jewel.
He lifts his shirt so I can scratch and rub and kiss his back. Kiss neck? he asks, and I happily oblige, pouring a weeks’ worth of love and affection into every touch and every kiss, whispering to him how much I love him, how he is my angel.
Boo was great for the doctor, too, tipping his head back like a pro for the eye drops. The pressure in both eyes was 12 (very good) and the doc said she could see the back of the left eye some, finally. When she tested that eye, he pulled his usual bullshitting: “A…X…J…G” – no matter what the letters really were…as if he thought he could outsmart us by declaring the letters with confident, rapid clarity. So I’m in the corner laughing with P and then the doc tries holding her fingers up instead, and he could tell her how many fingers correctly from about a foot away. This is super-encouraging because it means there is still sight in Jonah’s left eye. And maybe it’ll even improve. Best news of the day, hands down.
My boy has had a good week behaviorally, following a crappy week. I’m starting to accept the uncertain cycle of this, for the time being anyway.
I’m writing so much that these newly-August weeks are filled with work; I took on a temporary assignment for standardized test passages in addition to my other job with Modest Needs. I have two deadlines swiftly approaching. That’s just fine with me. When you love to do something, they say, it ceases to be work – and I agree. I love my job(s). At the tender age of 43, I’ve been set free of the rat cage. It almost feels like retirement, sans boredom. I have nothing to complain about. No matter what happens, I have been blessed. Nothing can take that away.
Tomorrow my mom and I will drive down to Rhinebeck as usual, hoping Boo will be like he was today – but even if he’s aggressive and impossible to handle, he can see out of both eyes, and that’s what I’ll be most thankful for, no matter which Jonah the world hands us.
YAY! Yay for Jonah’s left eye! Yay for the touch and kisses and giggles and love you shared with your son today! Yay for your writing busyness and for your joy in being set free from corporate America! Yay! Yay! Yay!
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Yay!! Yay!! Ditto!!
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Amy, Wouldn’t it be wonderful if Jonah’s agressions were at least in part because his eye hurt? Oh, I so wish it is true. Let us know how tomorrow’s day goes, and I weep with happiness at how wonderful your day was today. Love you!
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Your son is, what, 12?? And you’re bathing him and giving him “mamalove” kisses everywhere? Inappropriate much??! ? Beyond icky.
Interesting that you claim to love your Boo — yet institutionalized him. You see him once a week for a few hours. This is love, how, exactly? Boo learns to love and live and peacefully exist in the world by… not living with mommy or daddy??
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Wow!? Judgemental much?
Have you read that Boo has serious special needs?
Have you ever been attacked and beaten by your child? Have you ever had your child pull hands full of hair out of your head or leave you black and blue sitting against the refrigerator shaking when the ambulance got there – FOR HIM – and the police asking who was the one that needed medical treatment? Have you ever in your sat in the middle of an aisle of a grocery store and cried because you just could not take one more step because your heart was so broken for your child and you had no idea what else to do. Have you ever sat in the doctor’s office being beaten and had the doctor tell you to leave and never come back, despite how serious your child’s problem might be? Have you ever sat with your back against a bedroom door with three little ones in the room and held the door tight while your child banged on it with a hammer or scissors begging to come in because while he was raging and you were scared to death, he realized he was alone and now he was also scared to death, but you did not know whether or not the rage was truly towards the end? Have you ever sat against that door listening to his cries, knowing that he wants to be held by you, but you are afraid to open the door because you have to protect the other children too?
Have you ever lived a minute of the hell we have lived? No? I didn’t think so …
Boo learns to love, and live peacefully in this world because of two parents who have given up everything to provide him a safe place with lots of trained professionals who can help him, keep other people safe, and most importantly keep Boo safe from himself. Boo is learning to live and love because he is loved by parents who are willing to go to the ends of the earth, doing even the unimaginable to those who have never lived this way. Quite honestly, I am praising God that Amy, Andy, and their families are loving and caring enough to do what is necessary.
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It would appear, Icky McIckerson, that you are a newcomer to this blog, that you were not reading it in 2010 and 2011 when Jonah’s aggression escalated, when he knocked his mother backwards into the bathroom’s tile, when he attacked her many times, scratching her face, mutilating her glasses and yanking fist-fulls of her hair out. I doubt you read of his parents’ angst while coming to the excruciating decision–prompted by the teachers in his day school–that he needed the 24/7 guidance of trained professionals as he grew bigger and stronger an his physical attacks grew more violent and frequent. You could not possibly have read of his mother’s trauma the day she left the son she loves dearly at a school capable of giving him what she cannot.
Do you have a child with autism? An autistic child whose violent outbursts have knocked his grandfather to the ground, as well as his slightly built, thin mother? I suggest that you reserve your judgements and cutting comments until you have walked a mile in Jonah’s mother’s moccasins.
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Wow!? Judgemental much?
Have you read that Boo has serious special needs?
Have you ever been attacked and beaten by your child? Have you ever had your child pull hands full of hair out of your head or leave you black and blue sitting against the refrigerator shaking when the ambulance got there – FOR HIM – and the police asking who was the one that needed medical treatment? Have you ever in your sat in the middle of an aisle of a grocery store and cried because you just could not take one more step because your heart was so broken for your child and you had no idea what else to do. Have you ever sat in the doctor’s office being beaten and had the doctor tell you to leave and never come back, despite how serious your child’s problem might be? Have you ever sat with your back against a bedroom door with three little ones in the room and held the door tight while your child banged on it with a hammer or scissors begging to come in because while he was raging and you were scared to death, he realized he was alone and now he was also scared to death, but you did not know whether or not the rage was truly towards the end? Have you ever sat against that door listening to his cries, knowing that he wants to be held by you, but you are afraid to open the door because you have to protect the other children too?
Have you ever lived a minute of the hell we have lived? No? I didn’t think so …
Boo learns to love, and live peacefully in this world because of two parents who have given up everything to provide him a safe place with lots of trained professionals who can help him, keep other people safe, and most importantly keep Boo safe from himself. Boo is learning to live and love because he is loved by parents who are willing to go to the ends of the earth, doing even the unimaginable to those who have never lived this way. Quite honestly, I am praising God that Amy, Andy, and their families are loving and caring enough to do what is necessary.
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I McI, what sort of ignorant internet troll are you? Every child in Jonah’s boarding school is unloved? Institutionalized– what sort of 19th-century language is that? Jonah is fortunate enough to have all the befits of one of the best, most embracing, stimulating, supportive, educational, and behavioral programs available.
This is not a blog for vicious anonymous comments. If your life has been so empty that you have not had the opportunity to learn sympathy or compassion, it’s never too late. Jonah is surrounded by love, appropriate care, and wise planning. Educate yourself about the autism spectrum.
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Note: Because I spoke against anonymity above, I want to add that my name is Marilyn Richardson.
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IMcI,
What a trolling bitch you are! Congratulations! (inside joke for those of us who have read the entire blog.) Hopefully one day you’ll find yourself in a Lose/Lose situation and some anonymous C-word will treat you with the same consideration.
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Wow. YEAH for jonahs healing eye! And icky mcidiot is probably trolling some breastfeeding website telling them its inappropriate to let their children drink human milk, too so what.ev.er beoch! We will smooch our kids until they stop letting us
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thanks paula! i hope you are smiley.
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