It is Jonah Russell’s 10th birthday today, and time itself must be bending and twisting and teasing me, because I just can’t wrap my mind around that. I’m off work from noon today until next week. I was going to drive down to see Jonah after I got off work, but I’m recovering from an ugly stomach bug (I didn’t go to work at all Monday) and don’t want to bring it to him (if he didn’t bring it to me). Plus, I don’t want to upset his special day with an unexpected visit – he won’t comprehend why I’m there. They’ll have a pizza and cake party for him tonight — and he even gets a present or two.
We had our own birthday party for him at grandma’s house on Saturday; Andy drove him up and grandma had gotten him balloons, all his favorite foods, and cake with chocolate frosting.
Tomorrow morning M and I are flying to Denver, Colorado to see Guster play with the Colorado Symphony Orchestra. Then back home for two more acoustic shows before (sob) the tour is over. There is a reason my son learned to sing one of their most complicated songs. If you click on –> Keep it Together you can see a You Tube video of him singing it, and in pretty good tune & rhythm, when he was 7 — at a time when his verbal language consisted entirely of two-word phrases. (Sorry to long-time readers who’ve heard me say this a dozen or so times). I guess I brainwashed the child; he was certainly unresistant. And so together we live happily ever after in Gusterland.
I just sent their album Keep It Together, in fact, to the awesome nursing staff who drive him to doctor appointments. It was their idea; they said they’d play it in the van for him. I’m so grateful for the kindness of those who have my son in their care. There is no better gift to me than to nurture, teach, play with, care for, and maybe even love my little Boo.
PAUSE
At that moment the nurse at his school called to tell me Jonah required another two-person takedown today, after it happening twice yesterday. I called his glaucoma doc yesterday to ask if the new meds he’d given him (eye drops) could cause pain or increase aggression but they told me no.
I don’t know if I believe this.
I’m going to ask a good doc I know, though, and look into it some. I don’t want my boy to be in pain, or feeling this compulsion to aggress anymore.
What is it, bunny? What can I do to make this world softer, better, more tolerable for you?
Sometimes I get mad. It’s like that scene from Rainman where Raymond’s younger brother Charlie, played by Tom Cruise, loses it while driving in the desert and Raymond insists on purchasing underwear at a K-Mart 5 or 6 states away. Charlie screeches the car to a halt, throws himself out onto the empty road, and paces wildly, ranting to the desert before returning to his brother, screaming, “You know what I think, Ray? I think this autism is a bunch of shit! Because you can’t tell me that you’re not in there somewhere!”
It’s the whole theme of the movie, and sometimes the theme of the frustration I feel when I can’t communicate with Jonah the way I wish I could. Our bright, amazing, incredible little boy has such violent aggressions – and now juvenile arthritis and glaucoma to boot. It ain’t fair. He’s so brave.
Despite everything, little Boo, you are ten today — and I love you more than the earth and sky.
Baby Jonah, 2002
Happy Birthday, Sweetheart…
The Never Normal 
Happy Birthday, Baby Jonah, and Mama Amy. Love you! Enjoy Guster!
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Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, Jonah Russell,
Happy tenth birthday to you.
Jonah, I don’t pretend to understand why you have autism, why you are filled with rage that impels you to strike out at others, why you have Juvenile Arthritis and Glaucoma. I do know why you chose the mama and daddy that you did. Because your mama and daddy love you more than the earth and sky. And because they both will do anything and everything in their power to help you. My love is with you as you begin your eleventh year.
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Happy Birthday to your sweet boy
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Thank You for sharing your thoughts. I came across your article today through HLN. I read the title and started weeping. My little guy Patrick is 4, diagnosed with autism for about a year now. He has very little verbal communication, but will repeat requests echoically if you say the word for him. He is so beautiful and such a loving child. His teachers and therapists marvel at how easygoing and lacking of behavioral problems he is. Just recently, though, he has blown my mind and started to become aggressive and physically abusive towards our one year-old. He screeches every time she makes a sound, and will smack, pinch, grab, kick, and slam her to the floor, seemingly unprovoked. It is heartbreaking! The more verbal and active she gets, the more agitated he is. We have one other child who is 6 and he is in a preschool with neurotypical kids and an aid – all of which he remains wonderful with. Poor Lily completely avoids him now and I am scared for her safety if I have to leave the room for even a second. Any advice or suggestions? I’m even wondering about maybe a new neurological condition that would affect a sudden change in behavior like this. I have no idea what to do.
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Crystal,
Thank you for writing to me. HANG ON. I will e-mail you privately, but I will tell you here that I also have wondered if Jonah was suffering from a new neurological condition, too. But lately a lot of people are telling me it’s just part of autism sometimes – this aggression.
It is ugly and frustrating, horrible and nightmarish. You feel so helpless. I know. But the aggression is not your child; the aggression is not your beautiful, loving Patrick. It does not define him.
I really believe they can’t help it, these kids, the lashing out. I wish I knew what it was, how to fix it. I’m so sorry you are going through this.
Contact all the local autism resources in your area. Can you take Patrick to a child psychiatrist? Do you know a trusted teacher or a wonder-doc? Make noise. You need help. I will help you all I can.
amy
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A wonderful, helpful reply to a desperate Mom. You’re my hero…
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Amy,
Thank you for your sweet words. I’m sorry that you have experienced such heartache as well. My husband and I are hypothesizing that perhaps jealousy may be the root in some of his new behavior. Which, let’s face it, I would almost be excited to have him fighting for my attention, but certainly not to the expense of Lily’s safety. We are going to try some behavioral management techniques as well as consult with the child psychologist associated with his autism specialist at Duke University ( we are in NC). My husband, who is a family physician, is skeptical about an underlying neuro condition since he is otherwise functioning at baseline. I guess such is the nature of the autism beast. We are also hopeful that it will phase itself out just as his problems with eating and sleeping have ebbed and flowed. In the mean time, he responds very well to hugs and love. I’ve noticed that if I stop everything I’m doing when he begins to ramp up and try to engage him in an activity very enthusiastically, he will usually calm down. Hopefully that will continue to manage his meltdowns. I still have a hard time changing my parenting style i.e. ignoring tantrums. But I guess with our little ones, the rule book goes out the window. Take care!
Crystal
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Guster rocks! They opened for Barenaked Ladies about 12 years ago here in St. Louis. I just discovered your blog – I love it. Such an honest look into your lives, thank you for sharing it. Happy Peaceful Birthday to your sweet boy.
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