The Never Normal

Sometimes when I don’t blog for a while it’s because of a superstitious belief:  because everything is going well with Boo, I mustn’t write about it because it will break the streak of good, of happy, of laughter and kisses and hugs and learning.

Of course it is just superstition, but when you’re in my position you will cave to anything that works, or seems to work.  And that’s not the only reason anyway.  Without giving too much information about me, I had a hard February.  The kind of hard where I called a new psychiatrist for counseling and to adjust my meds and I called my OBGYN to figure out what the hell kind of hormonal changes are happening to me at the age of 44 1/2 to make me suicidal one day and joyful the next.  Menopause?  I already have osteoporosis and arthritis so why the hell not.

This will not do.

And so in the meantime I meditate and I pray and I work and I try to get outside – it’s so easy to hibernate most days when it is so damn cold and I work from home.  Some weeks the only time I go outside at all is to go visit Boo.

I didn’t even go to the advocacy thing I spoke about in my last post.  I was about as depressed as I get that day accompanied by a migraine that slammed me down into puking and crying.   Weakness.  My mind and my body betray me all the time, just when I’m ramped up to DO SOMETHING about all the low-functioning kids and their situations, just like mine before we were able to place Jonah at the Anderson Center for Autism.

And so for the first time in a month –  Two months?  – his school called me on Monday AND Tuesday to tell me that Jonah had gotten aggressive to the point that he needed “a two-person take-down” — meaning they’d had to subdue him physically.  Of course they know how to do it without harming the child, but someone always gets hurt in the process – usually a teacher or caregiver.  I suppose that’s better than another child, at least.

When I wrote to his room head teacher she told me she thinks it was because she was out sick on Monday, and on Tuesday there was a new child in the classroom.  Jonah does not do well at all with change.   Yet sometimes, as has happened many times in the past, there is no antecedent at all and we are left to wonder what the hell made him “flip out” for no reason we can discern.

It bursts my bubble again and again, and the longer Boo goes doing really well between aggressions, the bubble bursting hurts all the more.  Then again when I compare it to 3 years ago or so, I have to remind myself that it used to be 8-12 aggressions a DAY.  So I get out my trusty old bubble wand, blow some more bubbles, and hope.

He has been happy when my mom and I visit on Saturdays, dancing and singing and eating his lunch, taking his bath, requesting his Oompa Oompa, shrieking with joy, asking for car rides.  It’s our routine and he enjoys it.

Then I found a group on Facebook, thanks to an online friend, for people dealing with children who have “classic autism/severe autism.”  I expected the usual – a bunch of people arguing about diets and treatments and drugs, parents insisting “if you just do this you can cure your child of autism,” etc.  I was never so wrong in my life.  It was a light of love that I found — a place where you can say what is happening to you and your child without fear of judgement or blame.  A place where everyone affirms one another, cheers for the accomplishments and offers empathy for the disasters.  It is the best place with the best people I have ever found since Jonah was diagnosed, and I wish I’d found it long ago.

Because Asperger’s ain’t what we’re dealing with and yet that’s all anyone talks about in other groups, it always seems.  Parents bragging about their accomplishments, lifting their child(ren) out and away from the autism and into social groups and “regular” schools and how they take their child everywhere with them; that’s why their kids are doing so much better, don’t we see that?

I hate that shit.  I could never take Jonah anywhere with  me (in public) since the time he was a little baby, without facing stares and glares and the whole rest of it – my screaming, crying, unhappy Boo hating the car seat carrier, unable to participate in the little “music and movement” classes I’d enrolled us in before he was diagnosed.  Then, later, attacking random people in the mall, at the “family” restaurant, at parks and playgrounds.  And always the ugly glances, always the eyes boring into mine, the message loud and clear:  God what a bad parent she must be.  What a brat she’s got….until I prayed for winter to give us the perfect excuse to hibernate inside.

This new group is a cyber-world where I cry for others’ children and they cry for mine.  Where we offer each other suggestions and support but not any of that “I’m right and you’re wrong” bullshit.  Where we read one another’s stories, watch heartbreaking or joyful snippets of video, share blog posts, hugs, prayers, ideas, and love.   Where no one has to feel alone, or persecuted, or guilty.

I am so grateful to have found them, my fellow aliens on this planet of normalcy, so many of them suffering worse than I ever did, with other children to protect and deal with, often more than one on the spectrum, sometimes facing heart operations or other serious medical problems on top of all the other stresses.  God bless them all.  I don’t know how they do it but I do know how they do it — because life isn’t offering any of them a choice — you do it because you love your child(ren) beyond reason and would do anything to help them when they are suffering.

And so now I am no longer alone in this, not at all, not ever.

Yesterday when my mom and I visited, Jonah was happier than ever.  Laughing, giggling, smiling, lovey.  He pointed to the computer and asked for train and I put on an hour long video from YouTube with endless trains coming and going, coming and going, made by some rail fanner adult.  Boo sat mesmerized, first on my lap and then alone in the computer chair, alternately single-mindedly catching the visuals of the movement of the trains with a dumbstruck look on his face and smiling at the approach or departure of the train.  “Bye bye train!” I say, every time a train rounds a corner and disappears, only to be replaced with another approaching train.  Boo smiles, giggles, eagerly anticipating the next train.  Over and over.  Train after train.  When I had him on my lap I breathed him in at the back of his neck, gave him little mama kisses all over his shoulders, rubbed his back, whispered “mama loves you so much” into his ears.  I drink him up every time I see him like this.

And, on his car ride, as happy as the song playing on the radio:  Happy by Pharrell Williams.

My mom and I left in a satisfied state of happy ourselves, both of us saying “thank God” as we get into the car to drive away from Andy’s apartment, where he and Jonah will have “quiet time” in the big blue bed, just lying together, and sometimes Jonah will take a nap.

Then, later, the daily phone call from Andy, always around 8:08pm, always just after he has called Jonah’s residence house to see how Jonah did that evening – on Saturdays, particularly, after Andy has dropped him back off.  The news wasn’t good this day.  Always Jonah cries a little and maybe tantrums as he is being brought back to his residence.  He likes his residence and has his favorite people there but still leaving daddy behind is hard for him.

This night his favorite staff members were not there, and he was angry, and did not want his dinner.  They have other foods to offer the kids and he asked for a bagel.  I want bagel please? he kept asking, over and over even after he’d been given one.  His voice gets more desperate and he cycles through a million things.  Bath?  Car ride?  Train?  Bagel?  Bagel?  Bagel? and he ramps up even more, torn between a mysterious desperation and an OCD-like anger and sadness.

Eventually he went into his room and was quiet for a while.  Then one caregiver heard banging and crashing, and when she went into his room he was kicking the walls and throwing items around, frenzied with the sadness/anger again.  When she gently asked him what was wrong he flung himself at her, attacking her, and eventually needing 3 people to get him under control.  Another bubble burst.

God forgive me but I am grateful I don’t have to see it, to be the one attacked anymore, to have the freedom of being removed from it all, physically if not emotionally.

I have gone from this scratched-up, bruised, beaten down person

to this person

in three years.

I can’t believe the difference.

And Jonah has gone from this child:

to this one:

I have to remember that despite the setbacks, in general we are both so much better, so happier.

And if I am upset or confused or angry or sad, I know I now can reach out to my new peeps online in the Facebook group, and there will be understanding, there will be light.

I will try to post more often, superstition be damned…

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