Autism Spectrum Disorders

Jell-O

Because today he heard Grandma say the gelatin was on the same aisle as Jell-O.

And he’d heard of Jell-O before.

Somewhere.

I blame YouTube.

So Grandma made him Jell-O.

And he couldn’t really manage to eat (new food alert) Jell-O.

So instead he licked it.

Peeps, we have so, so, so much Jell-O left.

Oh. And then he snuck into my room and chugged my kale juice.

Every drop of it.

Go figure.


#‎SpectrumMom‬

Pic of my boy with his grandma. And Jello-O. And hands flicking so fast they’re about to fly off. Because he was THAT excited.

Oh. And proof he licked the Jello-O. Serious OT kuddos, kid. For reals.

I’m Sorry

I’m sorry, baby.

I’m sorry that I couldn’t give you the attention you desperately needed this morning.

I know you need more of your Momma than some 5 year olds do. I know you struggle when my attentions are divided. I know that isn’t your fault or something I should resent. I know it’s something I need to remember when I’m planning our days. But I messed up.

Momma’s been messing up for a long, long time but I promise you, Momma is learning.

See, when all the smart teenagers and twenty-something’s were going to college, graduating, getting homes and growing up, I was doing my own thing.

I was messing up.

I withdrew from classes if I didn’t like the teacher. Or if I liked them too much. (Oh dear Spanish teacher. You cutie, you.)

I worked and worked and worked but more for the social interaction than to earn and save money. My focus was on talking and chatting and shopping and pretending to be a grown up, rather than actually growing up.

I was messing up. I wasn’t learning anything.

When I finally found a job I was good at I spent my time lording that success over others in an I’m-the-queen-of-the-universe kind of way instead of keeping my nose to the proverbial grindstone and focussing on getting and being better.

I wasn’t growing up, I was messing up. I wasn’t learning anything.

When you came along, brilliantly and surprisingly turning my world upside down, I wasn’t ready.

I’ve spent the last five years with you playing a viscous game of catch-up. Trying to make up for all the things I hadn’t figured out about life before you came. About who I was. About who I wanted to be.

I started learning.

I went back to school. I learned to stay with the class even if I was up working on assignments at 3am. If you woke I nursed you while I typed. I learned to stick with it.

Then I learned to research developmental milestones.

And I learned what it meant if they weren’t met.

Then I learned all about language disorders and fine motor skills and sensory processing and Thomas the Train.

Oh dear Lord did I ever learn about Thomas.

And then I learned about autism.

And I learned about you.

I still messed up but my messes were cushioned by you. By your curiosity and your hugs and your dimple. By your needs and your successes.

I’m still messing up though.

Sometimes I procrastinate. Sometimes I think about myself more than you.

Sometimes instead of stopping to think about what it is I have learned and what I should be learning, I mess up.

That’s what this morning was all about.

You needed my attention. You asked for my attention. You begged for my attention. And then you GOT my attention.

I messed up. I didn’t put you as a priority when I was busy procrastinating.

When my other responsibilities reared their ugly head this morning, your still-messing-up-Mommy had to fix it.

And I learned from it.

I learned that every time I mess up it isn’t just about my fixing it. It’s about me and you and us and our time together that I’m compromising. That my reliance on the adrenaline of procrastination and impending deadlines HURTS you.

I messed up. And I learned from it.

But I’m going to mess up again.

I’m going to forget something important or say or do the wrong thing or make a mistake. But I promise you that I’m going to keep learning from it.

I’m going to keep learning how to be a better mom.

A better woman.

A better human being.

Because of you.


P.S. Pic of my boy hunting zombies yesterday in the sunshine.

When he had my full, undivided attention.

P.P.S. Written while I was at the Drs office. NOT ignoring my Boy

RIP London McCabe

I need to talk about this. I need to talk about this murder. I need to talk about this heartbreak.

I don’t NEED to judge her. A jury will. And everyone else. But I know that I also need to, instead of judging Jillian McCabe, spend my energy reaching out to other mom’s who have lost all hope.

Please hold on. Please, please, please. One more day. Make one more phone call. Please. Reach out your hand. Please

There’s always something to be done. Someone to help. Somewhere to go. Always. Even if you can’t see it. You have to believe. Hope.

As a group I ask this; let’s not condemn her. Someone else will have that horrible job.

Instead let’s talk about how she HAD been a patient. loving and caring mom. How her husband was dying. How she was facing homelessness. How she …. snapped…

And think about it.

I know humans are capable of horrible, horrible atrocities.

I know humans are capable of great beauty.

I believe humans are capable of being, and of creating, miracles.

I believe humans need help and prayer to be the better, and not the worse, of the race. They need support. They need hope.

So.

Today I pray for myself.
I pray what I always pray: that my fears never outrun my hope. And I pray a new prayer: I pray that I do not ever know the despair or brokenness that could drive a mother to do such a thing.

I pray for all of us reading about this tragedy.
That we use our sadness to motivate us, not our hate. That we open our hearts and our minds and look around us for someone who might need us. That we think of London and that our eyes are opened and we see those who are desperate. That we stretch our hands out to them, offering them a boost. Preventing another tragedy.

I also pray for other mothers headed down her path.
That you reach out, and find, a strong hand to pull you back up onto a better path. I pray someone makes you a priority. That someone is there for you.

And little London.
Oh. My heart is broken for you. I can only pray that your end was swift. That you are at peace. And that you have an endless, glorious supply of hats in your new home.

RIP London McCabe.

London McCabe. Lover of hats.

For more on the story:

http://www.kgw.com/story/news/local/central-coast/2014/11/03/woman-reportedly-throws-boy-off-bridge-in-newport/18446035/

Eclipsed

My Boy’s language development has hit a bump.

He was making progress with his ‘wh’ questions in language therapy. Really awesome. He had finally figured out that a question is a prompt for an answer.

No, he doesn’t differentiate between who/where/when/how unless the subject or object implies a certain response. But the Back-and-forth of questions is a big deal for us. Very big. For a little boy who acknowledges his name 20% of the time to take questions as a prompt for conversation… is just… wow. I guess unless you’ve lived it you can’t quite understand.

It’s had us all in giggles.

Then suddenly last week we noticed something was wrong.

For all of last year and part of the summer he worked on prepositions. On. Under. Over. Behind. Paper prepositions came easiest. Pictures. Cutouts. Drawings. They came first and rooted the strongest.

Then we made our way up the ladder. Paper laying down may imply different prepositions than paper on the wall. “Under” moves, you see.

Then there are prepositions with objects. Putting the tiny Lego Michaelangelo behind the 3-D Lego house is a whole new perspective. Did you know it was this complex? It can be. For a child with language disorders these nuances that other children just naturally absorb… don’t always absorb.

And then there’s the belly whopper of prepositions. 4-D relational. The toy is behind him. Behind. HIM.

That was tough. Behind him wasn’t a general area. It was a mystic place in the sky. One that evaded him as soon as he turned around until he was just turning in circles. Where was this curious place we hid his toy? He would be so confused.

It was funny when he was 1. It was hilarious at 18 months. Not so much at 4. When you know it’s a problem.

But this summer before he turned 5 he started getting it. Finally. We could direct him verbally to an object he was looking for and he could find it!!! Pride in a child’s accomplishment may be a bit different for a Spectrum Mom, but it’s still pride in a child’s accomplishment. Hard. Earned.

And so we moved on to ‘wh’ questions. The bane of so many spectrum families. And he just started sailing through them.

Cue angels singing.

And that’s when we noticed. He lost the prepositions. He totally had them. He HAD them. A year and a half of work and he HAD them. And then they were gone. Not completely but so much so that I could feel myself physically shrinking under the worry. Some of his expressive prepositions are there still. The simple ones. Sometimes now he will understand receptively he is asked to perform the expressive ‘put this on’ something.  The rest? Gone.

It’s okay to feel that wonder bread knot in your throat choking you now. I know I did.

And since I’m always afraid of being that skiddish/paranoid Mom I asked Grandma if she noticed. She had. And was worried, too.

So yesterday I was hitting up the SLP’s with questions. Getting tips. Reeling in my connections. Panicking. Trying to break down possibilities. The causes. Track the next steps. Worried. Panicked. Scared. Overwhelmed. Sad. Panicked. Did I mention panic? It’s a great one when anything resembling regression or loss of skills pops up. Just. Great.

And then I had to go to school, because that’s what I do. And I’m sitting there in class trying to listen, trying to pay attention. Trying not to be distracted by anything and everything. Because it only takes one little chip off a porcelain cup before it starts crumbling. And my attention is fragile.

When it was time for the eclipse, I was grateful for the break from class and I ran outside to look. I blinked. I looked. My eyes watered. I blinked and looked again. Until I could see it. There was this tiny little bit of rock (aka the moon) blocking out a part of the sun.

And here’s where I’m about to get profound thoughts.

Where I stand there realizing that the moon can only block part of the sun because it’s closer to us. Because that big, freaking ball of fire in the sky could swallow the moon WHOLE if it was actually next to it and we wouldn’t even see it go.

And I thought about the sun. How I don’t run outside to look at it and marvel at it and stare at it until my eyes water and my head aches. Ever.

Yet there I stood. Staring at the eclipse.

Because, from my view, a huge chunk of the sun was obliterated by the moon.

And I realized that’s what we have right now. With my boy.

An eclipse.

A small, tiny thing in our lives was taking the glory that IS our lives away from me. The glory of him. The brightness of all the amazing things he has done and accomplished. The awesomeness of his determination. The strength of his will. Him. My sunshine.

Preposition loss eclipses ‘wh’ questions. Eclipse him. My son.

And my profound little mind decided that our eclipse was just a thing to look at. To notice. To address. To work on, yes. But not to be more than that. Not to panic over. Not to see instead of him.

I could either focus on it or focus on the sun.

So here’s to sunshine.

G’nite ❤

Ecliiiipse.
Not that you can tell from the pic. But I could tell.

Because I looked at it. 20 minutes before it was safe .

Because I’m a rebel.

#Eclipse.

T.G.I.F.

So.

My Boy did some new things.

He:

1. Got Legos wet yesterday at OT without screaming. He didn’t enjoy it, but he did it. He loves water. Loves. But wet Legos are poisonous. K? K.

2. He did not put on socks after getting his hands wet at OT. No, I don’t know. It his thing, k? K.

3. He sat down and played/shared with a male child he’s only seen a few times at OT. He lasted about 5 minutes. It typically takes us months of regular contact to get to this point. Dunno whuz up there.

4. He got himself a drink this morning. No biggie except 2 months ago he couldn’t even tell us (or seem to know) when he was thirsty. Now he’s getting it himself? Huh?

The kicker is though that this morning we are on orange alert. He’s seriously about to pop an anxiety rocket. Like his body/emotions can’t keep up with the new things his brain is doing.

He’s pacing. He’s verbally stimming. He’s screaming in spurts.

Let’s call this a psychic mommy warning;

Do not approach. 

Do not make eye contact. 

Do not speak unless spoken to. 

Stand ready.

Meltdoowwwwwnnnzz a comin.

Pic of my Boy yesterday in OT with a Lego Boat. In the water. His OT sent it to me. Because she couldn’t believe it.

The Look

Hey friend,

I got a “look” today from a woman as we were leaving the grocery store, but it wasn’t the usual look. It was the pinched smile, raised brow and sympathetic eye gaze of someone who, if nothing else, “got” that my Boy was miserable.

 I was alternating hips so his headphone-wearing self wouldn’t give me a black eye, walking full blast past the pumpkins toward the parking lot.
 And she got it.
She got that he was not wailing and screaming at the top of his lungs through the aisles because he thought he could manipulate me. He was not thrashing because he thought he could win. He was not crying and snotting and choking because he needed a stronger momma or a Bible thumping on his ass.

He was full on meltdown and long, long past rationalizing a way out of his torment.

I didn’t know her. I don’t know that I would recognize her again if I saw her. I have only a vague memory of light hair pulled back tightly from her face. Or maybe it was brown and just highlighted. I don’t know.

But I saw her.

And I was grateful.

There are lots and lots and lots of blogs and articles online complaining about the rudeness of other people when autism affects their day unexpectedly. I’ve had a few of those incidents myself, but only a few.

The rest can usually be categorized as either blank-stared shock or awkward avoidance. A small percentage, usually someone of the more… Ahem… Grandmotherly persona, occasionally attempts to cajole him into distraction, which doesn’t work and in fact usually makes the situation worse, but is actually very thoughtful.

The rarest of the rare though, the golden response, the creme de la creme of acknowledgment,

is sympathy. 

Not sympathy for me because ‘my child has autism and OMG!!!‘ but sympathy because ‘he is upset and his Momma is sad that he is upset.

It might come from a place of experience or empathy or compassion or just flat out kindness. I don’t know. And I don’t know because it is so rare.

It’s a very lonely feeling, having a child you love more than anything in the world fall apart in front of you when you know the only thing you can do to make it better is push through or leave. It’s isolating. I can handle it like a badass, don’t get me wrong. I can carry that 45lb, writhing five-year-old superhero under my arm like a football all the way through a super Wal-Mart and out through the parking lot like I carry the mail. I can stay calm and keep my head up, my keys ready, his shoes on and still make eye contact with anyone in my way. There is no defensive lineman that can block a Spectrum Mom.

I can usually even find my car in the lot the first row I walk down, too. This is part of my natural awesomeness: don’t be intimidated.

But no matter how well I can manage grocery shopping during a nuclear meltdown, I still feel the social isolation of it.

Deeply.

So, Ms. Eye Contact, I just wanna say “thank you.”  Thank you for holding my gaze long enough for me to smile back. Thank you for breaking me out of the zone and spending 2 seconds out of your day to acknowledge me.

Thanks for really seeing us.

Love,

Spectrum Mom

(& Super Underpants thanks you, too)

Road Rash

Things have been going smoothly. Like really, really smoothly. We walk in to therapy. We walk out of therapy. He doesn’t bolt into the parking lot. He doesn’t bite anyone. Sometimes he even smiles at strangers. Sometimes. Ok, once.

A friend of mine offered to bring us with her to the Aquarium. What a blast. Right? Dark. Cool. Calm. Sounds like an outing we can mange, right? Right?

Oh no, no, no, no, no.

That would be incorrect. Not right.

He was so excited. He’s a four year old whirlwind and between his freckles and his giggles I forget. I forget that he just… can’t. When he whirls upwards the only way he can come back down is crashing. He doesn’t know how to just whirl back down and G-d knows I don’t know how to catch him. I try. I try as I sit on the bench and rock him. I try as I carry him as far as I can from whatever set him off. I try when I’m telling him what is next and watching to make sure he hears me.

And then I can’t anymore.

I just hit a wall. And when that little whirlwind crashes down onto the sidewalk and the screaming and crying tells me he can’t anymore I go autopilot. I pull or carry. But stuck on the goal of ”just get to the freaking car” I can’t seem to stop in that moment and help. I don’t know how to help. It’s 90 degrees and to my body that feels like 120 ( I mean really, that’s why we have air conditioning). I’m sweating. I’m seeing spots. My eyes are burning. And there he is on the sidewalk; prostrate under the 90 degree sun, back arched, tears streaming, sunglasses strapped to his head and monkey halter strapped to his back.

And he can’t and I can’t.

I can’t convince him that getting into the quiet car with lovely, cool air conditioning is better. That leaving is better. That going home is better.

He can’t hear me and process anything except that he’s done. It was too much.

He can’t.

I hate days like today. Days when I’m so excited to have some sort of human interaction that doesn’t revolve around autism that I push us both beyond our abilities.

I knew when he was on yellow.

It came fast and it came in a panic.

And I didn’t leave. I wanted to stay. So I stayed. I stayed til he hit red.

My poor little guy. I don’t want to say it isn’t fair because no one’s life is ”fair”. Living in this world comes with a ‘buyer beware’ tag that most decide to ignore as best they can, but it’s sticking out from every purchase. You can’t exchange your lot and I don’t think I’d want to anyway. I love my Boy. I love the freckles and the giggles. I love the lines of robots and searching for legos with a flashlight because that missing 1×1 Lego is SOMEWHERE.

I do not love 90 degrees on the sidewalk trying to drag a 40lb flailing ball of meltdown.

We’ve come so far. So very, very far. We have our routines and even the odd kink in the day doesn’t throw us off anymore. We just keep swimming. And our routine gets calmer and happier and we get to enjoy each other more and more every day. The past year we have seen beautiful things happen in our lives.

Life is good.

And then I go and figure that if he can handle a kink, he can handle a whole wrench thrown in, too.

But he can’t.

Not yet.

Maybe one day we can go somewhere new and I can visit with old friends and not worry about his halter or meltdowns. A visit where I can spend time oogling over her kids because I’m not on pins and needles waiting for mine to fall apart.

A visit that isn’t policed by autism.

But not yet. Not yet.

YET is the word.

Tomorrow will be a better day than today and tomorrow ”yet” will have more hope on it’s back than it does today. Tomorrow when I say “not yet” it will mean ”someday we will have this.”

But not today. Today it’s a little sad. Today ”not yet” has teeth marks on it’s arm and road rash on it’s bum from the sidewalk and a pulled back (on the right side, just below the ribs, thank you very much).

Today it thinks, “Maybe we will dig that stroller out of the garage.”

Today it realizes the stroller should have come out yesterday. Before the road rash.

Note to self; “Increased tolerance for new activities at home and increased pleasure in therapies” does NOT equal ”ready for an outing at a new place, in public, with new people.”

 

 

New Words

He spaces out.

We all know it. Me. The Grands. The Uncles. It’s just one of his ”things”.

We just wait a few seconds while his eyes grow wide and then one of us touches his cheek or says his name and waits for him to see us again.

Cuz he’s spacing out.

After all the exhaustive behaviors this has always been the least worrisome.

Until our (very nice) new Dr. Man addressed it. He was worried. His expression changed. He looked at my boy running around the office, flapping his hands and squealing. And Dr. Man said the word.

“Seizures.”

“Petit mal seizures. Zone out seizures.”

And that’s not even all of it.

All that screaming, chest arching, arm thrashing that has woken me up hour after hour at night for years? Maybe they aren’t night terrors after all. “Sleep seizures.” Who knew there were so many kinds?

“Have you had an EEG done? Do you want it set up right away?”

My boy didn’t become a different person with “autism, sensory processing disorder, impulse control disorder, AD/HD, speech disorders, neurological and musculoskeletal disorder” anymore than he did when Grandpa called him “B” instead of “Boy”. He’s the same boy he was before all those words came along; he just has more people helping him.

If only they ALL fit on that shelf! Problems, problems.

After almost five years into my adventure in mommyhood, adding one more log on the fire doesn’t really change much around here; Boy is playing Legos so I am pouring myself out to the internet. Same ‘ol, same ‘ol.

And tonight I will do what I always do at night when new words come into our lives, just as I have with the ones that have come before; I’m going to remember that new words are just new words, and we only need new words so we can address them and help my Boy get on with life.

So here’s to new words.

Name That Emotion

I’m not a crier. I don’t have anything against it, but in my own personal experience tears only flow when anger overflows. I never quite learned how to have that tummy-jarring, hand-shaking, strangle-an-apple anger without ending up crying. What can I say? I’m not a fighter. But otherwise? Crying? I just don’t really.

 I was thinking about Boy today. Thinking about how I don’t cry over his diagnoses. I didn’t cry about SPD, AD/HD, Dyspraxia or DBD-NOS and when the acronyms all meshed and flowed and settled on ASD like some overworked ouija board of acronym diagnoses I didn’t cry then either. That means something to me because, since I only cry when I’m angry, I’m therefore not ‘angry’ about his diagnosis. Right? What does that mean? Shouldn’t I be angry about it? Shouldn’t I hate it? Shouldn’t I be crying and shaking my fist at the evil autism fairies for striking my child? G-d knows how frustrating, tiring and helpless autism is. Being a spectrum mom ain’t a picnic.

 I’m trying to teach Boy his emotions. We still don’t have ‘sad’ or ‘happy’ down quite yet. Oh, he can name them on cards and point them out in a Disney princess, but naming his emotions we just don’t have. I got through to him one day though. Somehow the stars aligned as that venting, red little face tore through the back door and his eyes met mine ( aaaaaaaiiiiiiiii knooooooow, right) and instead of hitting, his little fists just hung by his side while he tried (apparently) to share some mental image with me via telepathy of whatever wrong had assaulted him. Like sunlight.Or leaves blowing. Leaves are a bugger.

 I pointed at his tummy and said ”That feeling you have right now, in your tummy, making you hot? That’s frustration. That’s when you tell me, “Mommy I’m frustrated” or “That makes me so frustrated.”

 Bam.

 Out. Of. The. Ballpark.

 If the kiddo is thirsty? Meltdown. Hungry? Meltdown. Sad, happy, excited, tired, etc to infinity? Meltdown. If he’s frustrated? “Mommy I’m so frustrated.” I hit that nail. On. The. Head.

 I taught him to name that emotion.

 It was only one.

BUUUUUUUUUUUUUT he has the name for his emotion. And in this kiddo’s life, frustration flows like water, so by all that’s holy I’m gonna polish that bad boy every day.

 Thinking about that, thinking about how I never cried over a diagnosis, I don’t cry at the end of a hard day, I don’t cry over him, I began to wonder. Can I name that emotion?

 It’s not anger. I know anger.

 What is it?

 I disagree with ehhhh… let’s pretend I know numbers… 50% of the other Mommy Bloggers; I say that autism is not a blessing or a gift.

 Autism is something that tortures my son, right? Keeps him from sleep and play and friends. It keeps him from learning to read and eating on his own and getting dressed. It prevents him from knowing what it feels like to run down a soccer field. Ha! Just kidding. No it doesn’t actually. He’s quite the runner, especially when I’m not looking. But it does keep him from playing soccer. Like, with other children.

 Autism sucks. I should hate it.

 So… name that emotion?

 What do I feel about it?

 I have a collection of paper growing for my little man. Every paper ever written about him is copied and organized and hole-punched and bound and waiting for the next time it’s needed. Now I want to be very clear; I am not Martha. You can’t walk across my bedroom floor without stepping on jeans, robes, blankets or socks, some of them worn, some of them tried on and promptly discarded, some of them just because they were in my line of site in the drawer. But if you need a document about Boy it’s all there. In chronological order. Color coded. In binders. What drives a person to do that? To go OCD on paperwork like that when she doesn’t even know if the renewal sticker made it to her car.

 OMIHOLYWHATDIDIDO. I don’t think the renewal sticker is on my plate. April. May. June. Oops. Um. Aww jeez.

 Ok. No. I just checked. I literally just took a break and went out and checked. APRIL 2014. This is June 2014. It came in the mail… I saw it… and that was most likely in April. But it’s not on my tag. GREAAAAAAAT.

 Ahem.

 Autism.

 So I’m a flake. But not with Boy. Not with anything about him. Speech therapy. Occupational Therapy. Physical Therapy. PCIT. Behavioral Therapy. This evaluation. That evaluation. Sedation dentistry. First step. First word. First meltdown. And on and on and on. I know it. Like driving to Taco Bueno Yum on autopilot I know it.. I know it all inside out.

 I don’t love autism. I don’t hate autism. Autism doesn’t make me angry. I think I just don’t really care about autism. I guess all ”autism” is to me is, well, the services and therapies we get because he has that label. Services I love. No. No, I don’t. I’d rather have play dates with another Mommy and sip Starbucks and get pedicures. But improvement from really great services by people who love my boy? I love that. Gratitude.

 And since I mentioned love; by all that is holy, I love Boy. And I think maybe that’s it. That’s what the other 50% of the Mommy Bloggers mean when they say they don’t want to kick autism’s butt. Maybe they mean “My child is my everything. And that label is just his paperwork. It’s not him. It’s his challenge. Like someone who is too tall or too short or too freckled.Only with meltdowns. Ha.

 At the end of the day, when my tired, sore self crawls into bed there is no anger or hate, there are no tears, there’s no venting. But there really isn’t any ‘autism’ either because ‘autism’ is the paperwork that I’ve sorted and filed already. It’s over there on the shelf where I put things I don’t think about until I need them.

  All there is here in this safe place we call home, all that is real in the quiet at the end of the night when I’m thinking instead of sleeping, is me and Boy. And if all that’s here is us, me and my Boy, then the only emotion I have here is love.

 So I named that emotion. The one in the pit of my belly that makes me a tiger Mom and a flake. Jack Nicholson-OCD-Crazy Eyes and a little bit shameless Ma Kettle.

 I’m me. But I’m ‘me’ fueled by love. A love that changes me into what he needs me to be, when and how he needs it. 

 Named. 1 job done. 10,000 left.

 So, goodnight.

 Goodnight, Autism. I realized I don’t care about you much. You’re filed with the other papers. Indifference.

 Goodnight my little boy. My Decepticon transforming in the living room. My frog catching man with a bubble beard in the tub. My snuggle boy at bedtime who smells like lavender oil and bananas. Love.

 Goodnight my love.

 Boy: I love you.
Me: I love you, too.
Boy, tell me about love.
Boy: Love is big stinky poo poo in the toilet because I eat so much food.
Me: Oh. Yeah. A big poop is always good.
Boy: Oh yes.

Welcome To The Spectrum

We didn’t actually just arrive here. We’ve been here the whole time, but our immediate family was the only group who knew it. Oh, there’ve been the few, wonderful/amazing/supportive therapists along the way who knew that we were here, and who bravely helped us find our way. The rest … not so much.

He’s four and a half. Well, almost five. And when he was two weeks old I was already staring at him wondering what was wrong. At two weeks old I was told it was the crazy-mommy-baby- hormones talking. At two months, still baby hormones. At one year, paranoia. At two years, low thyroid. At three years, still paranoia and Xanax might help. At three and a half, someone finally watched the videos and listened to me. At four he finally started receiving services. A lot of services. At four and a half I finally got a diagnosis that made sense.

It’s three nights after my one-on-one with the PhD. The one who came as close to understanding him as someone possibly could after two days in a locked room with my boy and his Legos, watching him stim, watching him run around the room in circles, try to escape the exam room through a window, giggle at the Play D’oh … and listening to him scream when they pulled me out of the room to fill out forms. There aren’t any more tests to run at this point. Every inventory, assessment, diagnostic schedule, observation pattern… they’ve all been run and I have a 4-inch binder where I keep them like some sort of golden trophy, hole punched and sorted and waiting for someone to try to tell me, once again, that it’s all in MY head.

Even now, after all this time, I don’t understand. Why would anyone, let alone a medical professional, tell a parent they were paranoid, overly worried or depressed instead of just sending the kid out for an eval? I look back and I can still see him, running around the exam room of our (former) pediatrician’s office, touching everything, climbing on everything, not making eye contact, not responding to questions. Just running in circles giggling. She looked me in the eye and said, “He’s perfectly fine. You’re worrying too much.”

The 4-inch Dx stack says differently, my dear indifferent Dr.

299.00 Autism Spectrum Disorder; Requiring very substantial support.

312.9 Unspecified Disruptive, Impulse-control and Conduct Disorder (R/O)

314.01 Attention-Deficit/Hyperactivity Disorder, Predominantly hyperactive/impulsive presentation (R/O)

…Dyspraxia… Dysgraphia… Sensory Processing Disorder/Neurological Sensory Differences… Poor Muscle Tone… Abnormal Gait.. Receptive Language Disorder.. Expressive Language Disorder… Phonological Disorder… Articulation Disorder… Fine Motor Difficulties…. Normal Vision… Normal Hearing… Impaired Verbal IQ… Average Non-Verbal IQ…

I’ve been told

He also giggles and hugs and smiles and runs in circles and finds joy in everything from pattern walking to popping Legos on and off over and over and over and over…. So I don’t care what the diagnosis is. I only care about the help he’s going to get, the services and finally… after four and half long years… fewer people looking at me like I am out of my mind. Maybe. Maybe they will see him in his monkey halter, wearing footie pjs and giggling or, if we are at the grocery store, tantruming and screaming like he needs an exorcist, and think I need serious Mommy-intervention.

But the ones that matter, the OT’s and PT’s and SLP’s and Behavioral Therapists… they will look at the papers in their hands, usher us in the door. and we will start fighting as a group what I’ve been fighting on my own for a very long time.

I hope.