Dear "NT" Family & Friends...

Dear Neurotypical Friends and Family,

Um. So, hey, I just wanted to let you know that... yeah.

I don't do jealous.

I don't know why, I just never have.

I've never wished I had someone else's job or car or house or family.

I've wished that I had a bestseller on the New York Times... but it's more of a naptime fantasy than actual jealousy over anyone else's book.

I don't want THEIR success.

I want mine.

And I want success for my Boy.

There are a million ways my mind wants to go when I start down this thought-road, so I'll try to line up a clear, easy to follow map.

And it starts with this: I am not jealous of you.

I am not jealous of your child.

I am not jealous your child is not autistic.

I am not jealous your child is top reader in his school.

Or that she won a state solo contest.

I am not jealous your husband helps with your laundry. I'm not sure how such a thing happens exactly, but I'm not jealous.

I'm happy for you.

I just want to throw that out there.

Because lots of someones are apparently concerned, since I started talking about my Boy's autism, that they can't share with me. They can't brag. They can't talk about the wonderful, amazing, fabulous things their kids are doing.

Out of kindness and consideration for feelings I don't have.

But maybe one day I will. Maybe, as my Boy grows and our differences are more noticeable and our struggles more intense, I will have a hard time celebrating with and for you.

But not today.

Today we are living in that soft, gray cloud that floats ambiguously between the storm of pre-diagnosis and the soft, lily white fields of "we've totally got this autism thing."

We are somewhere in the middle.

Where life is manageable.

Where hope is concrete and pain is fleeting.

Where I can share ''us.''

We don't have it all down yet, but I can see that the tunnel we're in doesn't end at a brick wall.

I can see that the very, very rough years we've been through had purpose.

And that's why I'm sharing everything I do. I'm sitting here on Facebook every night talking through my thoughts and feelings. Sharing the hard and the easy. Sharing the laughs and the tears. Reaching out because I know we're not alone.

I'm not jealous of what you have, I'm trying to share what I have.

I know our life looks very different from yours.

And I'm okay with that.

Because I love what we have. I don't love that my Boy has to struggle to get through a meal or to get dressed or go to the bathroom. But I love him. I love how he loves me. I love how loving him is turning me into this insane advocate-ish, educated, aware human being.

I love this crazy, messy, stained, saturated life that we have going.

So, I said all that just to say "congratulations, I'm proud of you guys.

You guys are awesome.

Tell me all about you while we're here."

And I hope, really, really, really hope, you're proud of us.

Let me tell you all about us while we're here, too.

<3
#SpectrumMom

Pic of Me holding my Boy. Who is wearing iLs headphones. At Occupational Therapy.

A Picture I took because after 5 months of his wearing them twice a week he's finally decided there's absolutely nothing wrong with putting and KEEPING them on.

Which is a huge triumph.

One of many we had today.

Celebrate with us.

— feeling blessed.

The Hard Stuff

I'm a Mom. So I worry.

I worry about the gruesome death of a five year old by consumption of excess sugar and the vitamin deficiency of a broccoli-free childhood.

I know, right?

But some of the things I worry about are harder to pin down. And infinitely more terrifying.

Maybe NT Momma's worry about some of these things. Maybe every momma does.

But I learned for certain this weekend that my worst fears are shared by a great many Spectrum moms. So if nothing else, at least I'm not alone.

I attended an autism conference. My first.

And it was amazing.

It was also really, really, really hard.

Because some of my worst fears are already real life, actual, serious concerns in the autism community at large.

And isn't that awesome?

And isn't that terrifying?

Because whether it makes you angry or not, whether it scares you or makes you sad or not, many of the Spectrum Mom's fears aren't just "fears."

They are realistic concerns about the trajectory of some children on the spectrum.

Especially children, like my Boy, who come with an alphabet soup of diagnoses.

Fears that reach into the unknown, frightening, far off adulthood of our babies.

Fears that are shared by therapists and doctors and teachers. And other moms.

It's a bit overwhelming to hear your fears coming out of other people's mouths.

To hear their concerns about emotional connectivity and relationship awareness and ever-elusive, hard-to-pin-down concepts like life and death and love and hate and how our actions are connected to our feelings.

Or how our actions have consequences.

Or how those consequences can be harmful. To themselves. To others.

Concepts some of our kiddos haven't grasped yet. Concepts they maybe will, but maybe won't ever, grasp.

l know that all a Mom can do is her best. And I'm giving it.

Cuz this kid deserves everything I've got.

Not because he earned it or asked for it.

Not because I love him or he loves me.

But because he's here. His very existence qualifies him to receive the absolute best he can get from me.

I think more people need to remember that: he deserves it because he's here. It's that simple.

Loving him just helps fuel me to give it to him.

Well, love and life and the fact that he's very, very cute.

<3

#SpectrumMom

Our alphabet soup: Autism, ADHD, SPD, ODD, Anxiety, Impulse control disorder, expressive language disorder, receptive language disorder, articulation disorder, phonological disorder, global developmental delay, weakness of the musculoskeletal system....(more here)

And the cutest dimple you've ever seen.

Just one of the many, many, many awesome seminars from the conference.

Letter A

We've had some success with the ''type it yourself into YouTube'' practice so I pushed the envelope today.

Play D'oh lettering.

Most Pinteresting Mommies know this one, but my guy hates letters. He does love him some Play D'oh though.

Well, now that he knows LETTERS = YouTube cartoons, he's a smidgin more pliable. Just a smidgin.

But here's the growth factor from the above little factoid that really blows me away; my Boy doesn't understand why we do things. Curse those "wh" questions!

But really;
 "Why do we wear shoes?"  Shoes and socks on feet.
"Why do we eat?" Apples and banana peels.

That's our language reality. So....
"Why letters?"  So that I can find my cartoons on YouTube like a big man.

Window. Opened.

Why answered.

Welp.... I jumped all over that like hotcakes. Spectrum Mom + Pinterest = Homeschool success.

Here's to ONE letter of success. One letter? Yup!!! I'll take it!



Hi there, Momma 'A' and Baby 'a'. How you doin'? (If you didn't read that in Joey's voice, you're doing it wrong; click here to become edjumacated: https://www.youtube.com/watch?v=YjQ1xD6UL-4  )

Lovely free printables found on Pinterest via http://www.123homeschool4me.com/ . Printed, added to slickies and put in 3 ring binder.

BAM!

'A' is for "ausome".

Lettering

So here's an updated version of our typing project. Boy added ''Lego'' as something he wanted to watch on YouTube. Good call, my Boy.

So here is a .pdf template and I will post pics this afternoon of his typing prompts. Heeeeeeeeeeeee

https://drive.google.com/file/d/0B-iqosn6ny4Zekg1NU51SlEwWkE/edit?usp=sharing



If you're new here and have no idea what I'm talking about, no worries. Click here and catch up!
http://spectrumletters.blogspot.com/2014/07/momma-letters-baby-letters-and.html

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!!!!

Early Intervention

     My boy is sitting in my bed, watching Transformer videos. Or rather, he is watching videos made by grown men and posted to YouTube about the +s and -s of certain Transformer figurines. I am trying not to be bothered that these reach him in a way that I can't; supporting the interest.
But as I watch him the thing I wonder about most, and am perhaps the most upset with at the moment, is the reality that the term 'early intervention' is very, very empty. That it's a catch phrase. That people use it to make it seem as if problems are being addressed, questions answered, services rendered.
     They aren't. At least, in our world they weren't. The Dr. who helped us with Boy's evaluation made certain to put his IEP assessment percentile rankings on her report. She did that to draw attention to them. Attention even I hadn't paid. I focused on the fact that he was ''at least'' receiving services. 15 minutes a week was better than nothing, right? Well, that depends. It depends on these nice little numbers, numbers Mommy's who don't know what they are looking at don't understand, mean.
These numbers were from last spring. One year ago. Before he qualified for the DD pre-pre-K class they enrolled him in and promptly tried to graduate him from without services.

1%

     That's 1 percent. That puts Boy in 1 percentile ranking. Which apparently means 1% of children his age score LOWER than he does and 99% score higher. That is not good. The PhD and OT and SLP at his school gave him that ranking in more than one domain on his Batelle Inventory. His total was 7%. I'll let you do the math.

And then I'll ask you a question;

Does 7% sound like ''does not require services'' to you?

Well, golly.

     So you see the frustration. A year later, after countless concerns and fits and interventions and assessments here we sit with a diagnosis that explains EVERYTHING and then I have to back track and wonder what happened. I mean; what the hell happened? Where did these specialists who do nothing but provide early intervention, get the idea that 7% ranking is ready to go into a typical classroom without modifications?
     I don't have the exact answer. I have suspicions. One of those haunting suspicions, lurking in the shadows, whispers that this is the reason IEP advocates and lawyers exist.

And it sucks.