Note: This is kind of stream-of-consciousness – I am writing lazily and may or may not proofread or edit…
This morning, P, one of Jonah’s caregiver/bring-to-the-doctor folks, called me at 8:09am on my cell phone. I was still lying in bed and answered sleepily. Jonah had an 8am doc appointment today with his glaucoma doc and I’d forgotten to write it on my calendar. There was no way I’d make it there, so I asked P to please call me after the appointment.
I want to emphasize my continuous daily gratitude at the mere fact that I can still be in bed at 8:09am on a weekday at all. It’s a distressing mystery how (and how quickly) I furtively and quietly descend from undying gratitude to a place where I am taking everything for granted. I’m doing pretty well at maintaining the self-awareness necessary to stay in appreciation mode, though. So I am still here in Thankful Land; even though it may not sound like it, gratitude is still my foundation.
When P called me after the appointment, she told me they weren’t able to do anything there. Jonah attacked her, J, the nurse, the doc…everyone but mama, the no-show. My immediate reaction was guilt — he expected mama to be there. I wasn’t there with octopus and fruit snacks and slinky and a drink. I started to cry and I said “I’m so sorry” – everyone had gotten at least a good scratch or bite, I’m sure. And I’m sorry because maybe if I was there he’d have been fine. Three hours driving for nothing. P told me it wasn’t my fault — and maybe it wasn’t — but my forgetting the appointment was my fault, and I don’t think I’ve ever done it before. So they have to reschedule and drive back up tomorrow or the next day if possible, because the doc is going on vacation.
Maybe it was divine intervention – I couldn’t handle seeing Jonah like that, so I was supposed to miss this appointment so I wouldn’t have to watch (or be injured by) Jonah’s out-of-the-blue attack modes. It’s just one more thing to add to the list of everything I don’t know. Good thing I am relatively comfortable with ignorance where it can’t be helped.
Is it normal for me to constantly want to attach Jonah’s behaviors to some shred of meaning? I am not a ruminator but maybe I should be more of one. Maybe if I tried harder to attach things, they would finally attach. For some reason today I need to feel like someone understands, and the blessing is that (partially because of a core group of readers’ comments), I know people understand.
There should be a non-fiction, realistic, autism book out there to help us feel like we are not alone and to educate the world that there are plenty of us who are just making it day by day, as best we can. I’ve read most of the well-known “autism family” non-fiction books, but they seem to offer not empathy but rather a superior attitude. And 90% of them (or maybe even 100%) are written about children with very high-functioning autism (or kids who were low-functioning, but thanks to the Superparents’ dogged determination, have climbed their way out of the darkness of autism into the fucking light). Evidently the rest of us can rest assured we have done everything wrong, made bad choices, and are selfishly lacking in the love-drive necessary to save our children like the people in the books.
Now I’m projecting.
I feel angry today. Can you tell?
Part of the reason I haven’t written in a while is personal, stuff that doesn’t belong here but has nonetheless messed with my head on one level or another…not all in a bad way. I have found out where I stand in order of importance/significance/priority with a person or two, and that order was lower than I knew, and that hurts. But I do it to myself. You teach people how to treat you, as Dr. Phil used to say back when he was still good. I’ve taught a lot of people to treat me however they please. Unless you have hurt me in an ongoing, vicious, or deliberately harmful way, everybody knows it’s a safe bet Amy will capitulate on the side of letting it go… or letting it be, right K? It’s the path of least resistance.
The truth is, though, things like this usually dissipate quickly. They exit my mind…and so they’re only really a problem if I allow them to be.
A joyful Sunday – went with my wonderful friend D and her husband to Tanglewood for the Boston Symphony Orchestra, which was fun and lovely. The Royal Baby was born (I wanted Kate to have a girl, though). I watched the last episode of The Sopranos last night (which, perhaps for the same reason I love Schubert’s Unfinished Symphony and Lois Lowry’s The Giver, I found appropriate, clever, and chilling). Then all the news: George Zimmerman and Helen Thomas, and this star’s marriage and the latest viral video. And the way I put off writing here when I feel dangerously upset or anxious, because I don’t want to come off like I’m having a pity party. The phone calls each night between Andy and me. Something I said to him on Saturday I wish I could take back because it laid me so bare I shivered in the heat.
Inside me today lives an unrest that may last for a day but has the potential to go on and on unless I get a grip, which I undoubtedly will, given the fact that I’m not sitting at a desk in an office selling advertising and trying not to feel all this.
I will post some picture-stores of what’s been happening since last I wrote.
On Sunday the 15th I went to Delmar for brunch to hear my lovely friend Chrys play with the Jim Sande Ensemble (they were awesome)
Jonah, last week at the same glaucoma doc he flipped out on today. Here they are testing his left eye. He can’t see out of the eye and is about to give some bullshit answer.
Boo playing nicely with the slinky I’d brought him…sitting in the waiting room patiently for doctor number two, this time planned that way. He was a very good boy the whole time.
Chillin’ while he waits for doctor number two, who told us everything looks great and the cloudy blood cells are beginning to dissipate. He got to leave without the eye shield, too! He’s had it on for two whole months. Poor kid.
This past Saturday: Daddy helping Jonah put his shoes on — and no more eye shield, finally!
Here’s a cute little video of us in the car: me handing Jonah some lip balm and showing him how to press his lips together afterward.
Me, at Tanglewood Sunday afternoon, about to enjoy Tchaikovsky, Bach, and Tellmann (all contemporaries; Beethoven and Mozart came next)
When the music’s over…
Lots of writing work today. I can tune my TV to 1270 and go back to the music…
The Never Normal 
Good to write it all down but don’t be consumed by guilt or what might have been. Don’t ever think you have done everything wrong or that anyone might think that. Truth is, no one truly knows what is right and we are all just trying and learning new things every day. Sunday afternoon looks wonderful! Debbie X
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My dear Amy,
I sit here trying to decide whether what I want so desperately to say is appropriate in this forum. Errrrg! Maybe a message on Facebook. Maybe an email. But I can say that although there is a decaying pit in your stomach over whether you did the right thing for Jonah, you did what you needed to do. For yourself and your own health, forJonah whose options had run out when he left his school, for your sanity.
I’ve been there…done that. I will never know whether it was the right thing to do, but it was necessary at the time. My life was on the line…my sanity.
I think I will feel guilt forever. It sickens me. But I did what I had to do, after every other option was tried.
So, dear Amy, you are not alone in this. Different cicumstances, same outcome.
I have surgery tomorrow, so I won’t get to the computer until I can crawl into the office.
OK, I’ve said enough. I am sending you energy to get through your mad, and know you are never, ever, far from my mind.
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Everyone forgets or misses an appointment once in a great while. We all feel apologetic, embarrassed and annoyed with ourselves. You have juggled so much for so long — don’t be hard on yourself for one oops.
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Isn’t it crazy how many books there are in the autism spectrum disorders section of Barnes and Noble? They multiply like rabbits … and used to make me feel guilty that John didn’t have 30 hours of speech therapy when he was 2. My most recent purchase was Chicken Soup for the Autism Parent’s Soul, which I haven’t read much of, but I think just having a book filled with what are probably other people’s similar problems makes me feel better.
I’m glad Jonah’s eye is on the mend! I hope the next appointment goes better.
Take care –
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First, I ditto what Art & History said. We all do that once in a while, it’s ok. Forgive yourself and move on. You have so much else to do, it is not worth fussing over.
Now, as for the HFA kids, and the non-fiction books of overcoming, and the autism is rainbows and unicorn farts…I feel your pain! I have a kid who is classified HFA, but as you know, we have been so far from rainbows and unicorn farts. And truthfully, while I have written good stuff lately about him, and he deserved the good stuff, don’t get me wrong, we have had more than our fair share of tough times, too. We have been attacked, today he pitched a fit in the car and the force of a punch busted a window that we have to have replaced tomorrow. We have holes in the wall the size of a basketball, and many other small ones. Samoo has had nightmares of D’s tantrums and the girls break my heart with the, “Sometimes I wish D was still at ” However, I know how they feel…this sounds horrible, but sometimes I wish that too.
I honestly can’t help but wonder if those people who write those rainbow and unicorn fart non-fiction books are covering up the times that are still exceptionally hard, those times when their kid (now grown), still flips out and screams and yells and loses his/her temper. I wonder, truly wonder, do these people not see that there are some of us who are working so dang hard and trying everything possible, and still cannot find the pot of gold at the end of the rainbow.
I love you, Amy. Take a deep breath, a long bubble bath, a cup of tea or coffee, and a good night’s sleep. Tomorrow is a new day. ❤ ❤
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First, I ditto what Art & History said. We all do that once in a while, it’s ok. Forgive yourself and move on. You have so much else to do, it is not worth fussing over.
Now, as for the HFA kids, and the non-fiction books of overcoming, and the autism is rainbows and unicorn farts…I feel your pain! I have a kid who is classified HFA, but as you know, we have been so far from rainbows and unicorn farts. And truthfully, while I have written good stuff lately about him, and he deserved the good stuff, don’t get me wrong, we have had more than our fair share of tough times, too. We have been attacked, today he pitched a fit in the car and the force of a punch busted a window that we have to have replaced tomorrow. We have holes in the wall the size of a basketball, and many other small ones. Samoo has had nightmares of D’s tantrums and the girls break my heart with the, “Sometimes I wish D was still at ” However, I know how they feel…this sounds horrible, but sometimes I wish that too.
I honestly can’t help but wonder if those people who write those rainbow and unicorn fart non-fiction books are covering up the times that are still exceptionally hard, those times when their kid (now grown), still flips out and screams and yells and loses his/her temper. I wonder, truly wonder, do these people not see that there are some of us who are working so dang hard and trying everything possible, and still cannot find the pot of gold at the end of the rainbow.
I love you, Amy. Take a deep breath, a long bubble bath, a cup of tea or coffee, and a good night’s sleep. Tomorrow is a new day. ❤ ❤
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