Month: July 2014

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.”

 

 

Buried treasure

 There comes a time in every rightly constructed boy’s life when he has a raging desire to go somewhere and dig for hidden treasure. – Mark Twain
For every moment that I can look at him and say, “That’s the autism” there is another, glorious moment where I can look at him and say, “That’s my boy.”  ~Letters From A Spectrum Mom
https://www.facebook.com/SpectrumLetters

“Dare is buried tweh-zure some-whey-uh!”

Chewing Gum Is Fun! Oral Stim Social Story

I made this for K.O.

Downloadable .pdf  ”Chewing Gum Is Fun” social story. Gum is a great idea for a socially acceptable alternative to certain oral stims.

Print this off, let your child color it while reading it together, laminate and bind and you have a handy guide to the rules of chewing!!!

Thanks for the idea, K.O.

I hope this works for you!!!

https://drive.google.com/file/d/0B-iqosn6ny4ZWE9oUmVlcElGYU0/edit?usp=sharing

 

EEG Update; To be or not to be… it’s up to us!

Ok.
So according to the neuro #2+++ “idiopathic staring spells” are common in severe autism and the prolonged episode we experienced after his EEG was not a seizure but rather my Boy’s brain shutting down from over-stimulation. Which is the OPPOSITE of a seizure. Okthen.

He felt that Boy’s “autistic spells” are mild enough in nature as they occur in daily life that they can be accommodated (rather than medicated) and that it is up to us whether we want the 24 hr EEG. Yeah-NO.

Because of the severity of my boy’s autism** (
**Cue Boy hiding under exam table and growling) he said that if we decide to do that he would like us to go to the epilepsy center, but again, because they are short and mild in nature, they would likely choose NOT to treat medically, even if the diagnosis were epilepsy. Which they can’t be sure it is. And can’t be sure it isn’t. Got that? Good.
So that’s a pretty firm yes/no/I dunno accompanied by a very adamant “move forward with life as you’re doing it”.

Additionally, (because there’s always more and it’s always an after thought) previous Drs who were unable to elicit post-rotary nystagmus and patellar reflexes may or may not have been incompetent. I didn’t share this with our pediatrician (who rotated under neuro #2) when we updated him yesterday. I’m thoughtful like that.

So…. odd reflexes that come and go? Who knows. Epileptic? Who knows. Idiopathic staring spells are ‘best guess’ by a highly revered Neuro? Um… ok.

On with the show.

 
#EEG

+++Neuro #1 said that despite his obvious Challenges (cue Boy licking my shirt and rubbing his teeth on my arm) we are doing an amazing job and to keep up his therapies.

 

Momma letters, baby letters and squeakless learning.

Writing his name is coming along. Slowly. Very slowly. Painfully. Slowly.

So slowly that I’ve learned something new; Letters are not writing.

I am just starting to wrap my brain around this.

Letters are not writing.

Letters are the base of the pyramid of written, typed and most other non-spoken forms of communication.

Writing involves fine motor skills and squeaky sounds on delicate paper.

Letters are not writing. Typing is not writing. Writing is not reading.

And which do I want more? Writing or reading?

So we are taking a mini-break from writing to learn letters. Not A is for Ant because Boy couldn’t give a Hootie’s Blowfish about Ants or Aunts or Alphabets. And no, he can’t sing the song. So I’m trying a work around.

He learned the letter ‘H’.

 “It’s a line (finger down his chest) and another line (finger down the other side of his chest) and a line (finger across the middle). That is Hero Factory.”

Ahhhhhhhhhhhhhhh….

Light bulb moment. I love light bulb moments.

“Yeah. That’s called an ‘H’ and ‘H’ is for ‘Hero’.”

Now he’s telling everyone. Our world is the letter H.

So progress a few to rainy day/not enough to do/Youtube day/Momma’s beat day.

 

“What do you want to watch?” YouTube, I love/hate you.

“Hero Factory.” Of course.

“Ok.” (Starts typing)

“NO! I will do it! I will type it.” (proceeds to find iphone’s mini letter ‘H’).

Spectrum Mom mind blown.

I tried to help him with the rest but E & R…. they don’t mean anything. They are rambling sounds that his little auditorilly challenged self just can’t grasp.

Ok. Open up your brain…. think…

“Boy, what shows do you want to type into Youtube?”

“Hero Factory. Mixels. Thomas.”

Type it up for him. Print it out. Let him follow the letters like he follows his Lego directions.

Problem solved.

https://drive.google.com/file/d/0B-iqosn6ny4ZcEtjb0NsNVRpb2c/edit?usp=sharing

I thought.

But typing in himself he noticed the ‘E’ he typed came up on Youtube as ‘e’ and we narrowly averted a meltdown.

Ok.

“There’s a momma letter and a baby letter for each letter you type. They sound the same and they build the same words. You might type a momma and baby comes up. That’s ok. They’re the same letter.”

Got it.

Problem solved version 2.

https://drive.google.com/file/d/0B-iqosn6ny4ZQ3Y4ZmRPU1lucUU/edit?usp=sharing

 

If any of your kiddos are struggling, I hope you give this a try. It took me about 5 minutes on a computer doing pic searches for Google and copy/paste. Let me know if it works for you!!!!

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.

When Momma Fails

He was so wonderful this morning. Don’t get me wrong, he wasn’t easy. Never easy. But wonderful. He wanted his Momma. Kinda crabby and kinda clingy. His first words today were “No going nowhere today”. And that’s where I failed him. Right there. He told me he wasn’t up for it. He wasn’t ready for today. He needed a break.

So when the promise of garage sales dangled and he took the bait I thought I’d won. I thought he’d be fine once we were out and about.

I was wrong.

30 minutes into our first attempt at getting into the car, Grandpa had to come help. I had managed to get Boy IN the car , but not all the way to his car seat. Then I couldn’t get him back out of the car. Grandpa did though.

They sat and watched the brush fire, Boy on Grandpa’s lap, Grandma pacing with the water hose. Then boy decided to run TOWARD the fire. Grandpa promptly brought him back to me. Then grandma cajoled him into heavy labor. Then he got to play with the water hose. Then some jumping on the trampoline while I sprayed him with the hose (oh ecstasy). 

Then he wanted to go to the garage sale.

And I failed him.

Because we tried again. We didn’t make it. And sitting in the car I realized it was lunchtime and we still had to stop at the store.

Fail.

I don’t know if anyone in that store had ever heard screams quite like his before. They ranged from intentional/high pitched/tantrum to guttural/meltdown. They varied between the two in waves. The only bonus was that at this point he was so beyond salvation that he remained in the shopping cart. He couldn’t even fight it anymore.

Two cashiers checked me out. They scanned the card while I held his fists. One asked if he was my only. I laughed. Right there with screams on one side and horror on the other. Yeah, he’s my only. My one and only.

It took 28 minutes in the car before I could get him in his car seat. I rocked him. I kissed his tears. I apologized for not staying home. I plugged my ears when he screamed. I kissed him some more. I squished him between the seats. I wiped his tears (when he would let me).

I failed.

When he fell asleep, .5 a mile from the store, he was sobbing in his sleep.

When we got home he snuggled on my lap while he ate his hard won, organic, grass fed meatballs.

Then I snuggled him in his bed until he fell asleep. 

My heart hurt.

I had failed him. I failed him when I decided to treat him as if he were typical. I failed him when I didn’t listen to him. These past few years, working so hard every day to give him words. And I didn’t listen to them.

In the quiet of his room I looked at my beautiful little boy, napping under his glow in the dark murals. I painted those. Painted them because he asked. I had listened to him. I looked back at him as he smiled in his sleep, his breath steady and peaceful, and I realized I hadn’t failed him at all. Failure is when you’re done, when you stop trying, when you give up. Through all my wrongs in this life I have never, not once, given up on him. I didn’t fail. I made a mistake. I made a mistake but I was there with him the whole time and we came through it together. 

I didn’t fail; I learned, more clearly today than yesterday, to listen to him.

And now he’s napping. And everyone knows, nap time resets the day.

What Do You Do?

I got asked.

 I knew it was coming because I was second in line. I had a full two minutes to think about it.

“I’m retired.”

It was all that I could come up with.

Until I heard “I wish I was retired, too.” That lit my fire.

Nothing makes you realize the absurdity of your own statement like a good reflection.

Plan B; “I’m retired from ____. I’m a full time student. I’m a stay at home Mom to a four year old boy who is severely autistic.”

It still wasn’t enough though.

“What do I do?”

Nothing really.

I don’t “go to work.”

Don’t go shopping. Or out to restaurants. Vacations. Coffee dates. Pedicures.

What do I do?

I wake up a half a dozen times a night to make sure my son doesn’t get hurt during night terrors.

I chase him when he bolts, often grabbing him by the collar right before he runs into parking lots or streets. Because he won’t wear a leash and he’s too big for me to carry him around like an infant.

I hold him like a yogi-Jedi master-pro wrestler when he’s having a meltdown. I strain back and stomach muscles doing it.

I make certain he doesn’t eat cat poop and cat food.

I decide which counters he can lick and which ones are off limits. And shopping carts. And trees. And people.

I take him to occupational therapy. And physical therapy. And speech therapy. And behavioral therapy.

I hide toys in bins of rice.

I plan his sensory diet.

I practice PRIDE skills.

I laminate PECS.

I help him line up his toys so he is perfectly, ecstatically happy.

I write his name on bathroom walls with shaving cream and teach him to trace it with his finger. And I make him wait 30 seconds before he can rinse it off.

I wipe his bottom.

I turn his straw a perfect 90 degrees.

I read him stories.

I talk to him about the seeds in watermelons and how they grow into new watermelons. No, not apples.

I tell him about G-d and I hug him and kiss him and tickle him.

I schedule play dates with children even knowing there will be fighting and screaming and meltdowns.

I rub essential oils on him that I can’t afford and I give him deep tissue massages even though it’s my back, neck and muscles that ache.

I fail daily at teaching him how to comprehend danger or sing the alphabet or recognize sight words. I try everyday anyway.

I fail daily at teaching him how to ask for help or answer a question. I try everyday anyway.

I try. I fail. I research. I try again. And again. And again.

I read about and research everything he struggles with; SPD, expressive language disorder, receptive language disorder, lack of post rotary nystagmus and patellar reflex, artic and phonological disorders. At night. In my room. Waiting for the next time he needs me.

I live in an 18 hour per day time loop that is full of frustration and exhaustion and miracles.

I am determined that we will not survive this life. We will conquer it.

I show him how to live in this world and I watch over him and guard him and teach him 24 hours a day. Not because I am super human or paranoid or have nothing better to do. Not because I need to be needed. Not because this is the way I thought it would happen. Or because this is the way I planned my life.

I do it because I’m a Spectrum Mom.

And that’s what we do.

RAWR.

 

 

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.