Two Beasts in a Bottle

John is finally asleep. I love my children, but Autism can still go fuck itself in its ear.

The worst part about having more than one child with Autism is it is no different than being a child in any family with another sibling with a chronic condition.  My oldest, Jacob is comorbid and complicated. He is also loud, abrasive and an unusually engaging Autistic. He is a sensory seeker, he demands an audience, but on his terms. He also still loves snuggles, hugs and stuffed animals. He's awesome!

My middle son, John is a text book moderate Autistic.....on paper.  His language was delayed, hence the moderate diagnosis. He is quiet, he is delighted to disappear from the world. Then when it's just you and him and he is comfortable enough, he is hilarious. He tells Uncle jokes, and he has immaculate timing. Better yet, he waits for your response. I praise every single Speech and Language Pathologist he has had since age 2 for that. And me, I tell the worst Uncle jokes.

While my oldest seeks out your response, once it agrees with his, my middle son waits for it. But he has to know you. You have to be close. A teacher he trusts  (we have two this year, we adore them, a case holder and science teacher), a family member, someone he can dissolve in. Hard enough for a Neurotypical child (NT). It takes a long time for middle boy to connect.

My sons have the same diagnosis on paper yet they couldn't be more different. One arrived talking, one arrived silent. I would comment on their sister, but she would talk your head off.

It's a three headed monster. I kiss all three heads at night.

Me, A Troll?

Today I was accused of being a troll. Really not a big deal, I've been called far worse in far more polite forums. What bothered be about this was the context of said name calling. It was a reply log to an article about something exceptionally close to my heart. A 3 year old boy with autism who was subjected to a 5 hours ride from his school to his home; a trip that would usually take his parents 20 minutes. A dear friend of mine posted his own scathing article; well written, composed (considering the subject matter, he is al so a parent of a son with autism.) Along with the usual platitudes, "Oh my GOD.....That's horrific......if that was my child," I could easily pin point those with children with Autism and special needs comments.

Then, there were the others

You see, I have been spoiled. I am in a private group for parents of children with Autism. I have several face book and twitter friends and followers who just get it. I have cut out all those that are cruel, or refuse to learn or understand.

I have been reading back over my last few blog entries and am quite aware what a lyrical but melancholy sense I have been weaving.  I've been so introverted and selfish, I forgot about the rest of you.  The parents of the 1:88, the aunts, uncles, cousins and siblings of that 1:88.  If you entered my blog you no doubt would have stopped reading four sentences in and run screaming for the nearest Developmental Pediatrician. Shit, I would have.

I have a dear online friend (yes, most of my special need friends are online, and on the phone) who is dealing (I refuse to say struggling) with three special needs babies, aged between 1 and almost 5.  Today I started wondering what I would have wanted to hear from a been there done that Mum; three kids with needs, aged between 1 and 5.

* This too shall pass; Hannah is entering Kindergarden this Fall, her IEP is this week.  She is still a sensory mess, but compared to the 15 month old I literally held out like a sensory offering to Babies Can't Wait, she is eager, willing and racing towards Kindy.

*

The Meh and the heartbreak

I hear "My Heart breaks,"...."doesn't it break your heat." Even from those that have plenty enough to bear heartbreak wise. If it's not your child though, that heartbreak seems warranted, even accepted. I have read and followed many an article and thread and it seems "My heart breaks" leads the view. I can only speak from personal experience, my heart doesn't break. It just doesn't, my emotions are pulled, like a tug boat against it's will. You know you should but you don't want to, in fact beneath it all you're irritated you are asked an emotion at all. This is America where American emotion's are worn, expressed and thrown like confetti. Our real emotion, well, we don't know. We have been lead and drawn to convey and spread out emotion like a thin quilt.We cleave to theater to help us express said feelings: Golden Globe's, Oscars's. Oh trust me, I am as much to blame, I cleave the play, the distraction. I read a tweet tonight that said their "heart broke",while watching a recipient's acceptance speech. It reminded me,all the times I see similar tweets for stories about people, kids and adults how their "hearts broke," for an illness,a death,a child with cancer, that child's death from cancer, a celebrity's death. I have lived heart ache from a few seconds after Jacob was born. Not lack of love,not lack of longing but a heart ache. A knowing something didn't fit. The professional's around me knew as well. They shared the heart ache. Periodically we cried together. I lived that heart ache until he was medically diagnosed as Bipolar and Autistic. Then my heart broke. When your heart breaks it's the ache you've been carrying, it slows down, rests and stops. It's quite peaceful really. Seven years later I still carry it,although it's not an ache or a break. It's a hike. Don't laugh, that is what Autism and Pediatric Bipolar is, it's a hike. You slog, someday's you keep the head down and trudge on, someday's it's head's up and uphill and looking around. Many day's is head forward,no movement,forward,the blinker and both side's of his face, keeping him forward, his wide guide. Because those days you are his guild, compass and counselor. So,when I hear "My heart break's, my heart aches...."I think, really, my heart goes meh. I couldn't survive breaking and aching. Meh means I can aide him,all of them, and me. My heart goes meh, a lot, but it's my meh.

Hey Bipolar Bear

In a previous blog a long time ago I referred to Jacob's Mood Disorder as Bipolar Bear. He was in the midst of a manic episode and I knew where it would end. I was spot on too; it ended up with an emergency appointment and a swift medication juggle. Here was my dilemma, I was delighted he was receiving the treatment he needed and simultaneously traumatized that once again we had barely escaped a psych ward admission. We've avoided it thus far, really minimally avoiding that threshold between outpatient and commitment. He's still little though. He was an even littler boy then. Yet today I knew from the moment I heard the sun, my bear is again sick. There is a 'normal' state of silliness and hyperactivity before his Adhd medicine focus's him. Today was different. I heard that scream, that maniacal laugh, that racing thump of ball and heel along hallways, and immediately my throat constricted and my stomach formed an introverted knot. Remember, Jacob has co-morbid disorders. Autism, Adhd, Bipolar Disorder. They Coexist like a Russian nesting dolls. Jacob's nesting doll is not finite, it's not fixed, no one neurology is bigger or smaller than the other. They hold hands and dance, twisting their pathology like a twisted ribbon on a Maypole. His dolls dip in and out of one another, they overlay, separate and return; a psychological osmosis moving though each other. His brain and neurology strike cruel tricks, cast riposte and shadow. Today it was not my Jacob, today the doll's spoke, not my bear, I only heard the dolls. Over 13 hours they laughed, screamed, cried, sobbed, raged and finally slept under the gaze, yes tears, remorse and soothing rub of nails on a 12 year old boy's little back. His body relaxed, slack and soft, and finally my bear slept. Tomorrow the doll's and I need to talk.

When Jacob asks!

When your 4 year old son decides in a fit of rage his best recourse is to attempt to break the body of an acoustic guitar over your back, his cries are suddenly heard loud and clear. At the time I was in reactionary mode; I didn't hear that muffled cry, embedded in the splintered case and sprung strings. I heard the dampened echos of something alright, but his cries were still crouched in the nonverbal corner of his autism. It was enough, it was the clearest he'd been since those first screams of afterbirth.

I sloughed off well meaning relatives, doctors and friends and he and I took that first step together. My justified fear carried me through the next few days; I blocked out the world, it's criticism, advice and judgement. Jacob and I took that broad step together into the realm of pediatric psychiatry.

He couldn't tell me much, his action with the guitar had said enough though. Eight years on and last week Jacob expressed an interest in his own medication regiment. After eight years of speaking for him, I both relieved and reluctant allowed that red headed chatterbox speak for himself. He asked to stop.

Who am I to say no? Three days in and weaned off his main mood stabilizer we wait. The wait is different now, because Jacob asked.

When My Well Is Empty

Unfortunately I don't write about the everyday things that would warrant a daily, weekly or even biweekly experience.  The Island of Autism and special needs is far more mundane than you think.  You see, us parents, teachers, leaders, go out of our way to try to make everything the same.  Changes in schedules, glitches in an everyday habit can throw our children and thus ourselves into a meltdown, anxiety attack or even as tonight proved a few flipped chairs, slammed doors and irrational yelling.

I sense you are either nodding or curious.  While tantrumming over a negative response Hannah flipped chairs, by "accident," Jacob interfered with everyone's personal space and screeched for about 30 minutes, John declared he needed space and locked his door, (the sanest of all reactions).

Slammed doors?  Oh, that would be me.  Irritable and snappy, that would be me too.  It was a long few weeks and today when school was out I was effectively on essential mode.  If you know Maslow's Hierarchy of needs I was pretty much at the base two tiers of the pyramid, although you can snip out the sex bit ;)

http://two.not2.org/psychosynthesis/articles/maslow.htm

My children would be of course given food, water, shelter, clothing and security.  Basically I was down to my absolute last enth of an ebb.  Of course you tell that to a child.  Now tell that to a child with hypersensitivity, hyper anxiety, hyper activity, and basically a need to treat your (meaning my) physical body like a lamp and they are the moth.  The more I pleaded for space, the more my two sensory seekers sought me out.  It wasn't anything mean either, just a need to feel loved, wanted, understood, held.  Still, by the evening I had nothing left in my personal well to give.  Even me, (and I know many close special needs parents can avow to this) was empty.My well was empty.

When this happens I simply need space, as simple as sitting on a bath tub with a locked door for 20 minutes; yet even then the fingers slid around under the door gap asking "Mommy...where are you!"  I found time to go walk for 30 minutes, I arrived back to hysterics as to where I had been even though they had an adult with them.  We were now in full fledged Autism and anxiety.  This continued all night in flurries and clouds of moments.  I flitted from crisis to crisis, like a ladybird with one wing.  When I felt we were all finally settled, out of nowhere I was asked something actually quite neurotypical, I don't remember what it was, most probably something simple and easy.  Yet my well was still empty.  I stormed down the hall, slammed a door, heard a picture frame crash on the ground and fumed quietly to myself.  Of course later I emerged and found my little girl playing with stickers.  I apologized and she hugged me no matter what.

Isn't is comical, we deal with the special needs as best we can,  maybe irritant and grumpily when overwhelmed,  but after that a typical child request just edges us into slamming doors and fractured picture frames?!  But, what a hug, and I know I didn't earn it.