the crack and the light

A Different Kind of Valentine's Day

2012-02-14T20:16:00.000-08:00

My Valentines
Photo from 2009

I sort of forgot it was Valentine's Day. I find that odd, as I did remember to bring Valentine's cards for J-man to hand out to the other kids at his program. Made a point, in fact, to go back into the house and get them before we left. But at a late afternoon lunch with Big Daddy, he said ... sorta as a side note..."oh Happy Valentine's Day". And I went "yeah... I kinda forgot. There is a card for you in the drawer at home....". And we both wrinkled our noses and laughed.

We aren't anti-Valentine's Day. While there is plenty of reason to think Valentine's Day is just this made-up-marketing-buy-candy-and-jewelry-holiday, I also see nothing wrong with celebrating love and romance. Taking one day out of the year to just be sweet to each other. It's cool with me. We just didn't really do that this year. This year seemed to be a "we love each other everyday" kind of year, with no special pressure one way or another to somehow prove it today.

So instead of roses and romance, how did I spend my day?

Well, last night our Miss Dolly had to go in for emergency surgery. She had an uterine infection, and it needed immediate care. I spent pretty much the entire evening at the vet with her, getting home after midnight and getting up far too early this morning with a very cranky J-man. Big Daddy fetched a very tired and sad little dog home while I delivered J-man to school. Cranky. Then I spent about an hour in a meeting with J-man's OT, discussing his latest evaluation and new plan of OT action. It involves pencils and fine motor skills and feeding. Slow and steady wins the race, right?

After the rather productive OT meeting, I embarked on my ~~newest folly of epic proportions~~ project. Somehow... and I am still not exactly sure how this happened... I got ~~suckered~~ talked into helping spearhead a group that is trying to get insurance coverage mandated for individuals with autism in my state. Right now 29 states have some level of mandated coverage... and Minnesota is not one of them. What this means is that very few private insurers will pay for any therapy or services for autism (ABA, Speech, OT, whatever is needed), and that most families have to turn to the state Medical Assistance plans to get any coverage whatsoever. And that coverage is extremely difficult to obtain... lots of hoops, lots of hoops. It is a dicey situation, and one in which I want to help rectify. And now, suddenly, I am in this position to help recruit and organize people to write, call, and visit their legislators at the Capitol to try and get some legislation passed and policies changed.

Dude, I am just a mom!

Here I am with this little team of people, starting a Facebook group, making up a website, having phone conference calls and today... today I went to the Capitol and had my very first meeting with my Senator. I told him our story and showed him videos of J-man's progress. Talked about the issues specific to us right now. He asked questions. I answered some of them... failed some... and promised to get back to him on those things I could not answer.

Dude, I am just a MOM!

But here is the thing... even though I believe that 'politically' he was not one to likely support issues like public insurance or putting mandates on private companies or etc etc etc... you know the drill... when he saw the changes in J-man on video! How utterly amazing he is! When it was there, in his face, and I said to him : we are the lucky ones. We get to have this because my employer is knowledgeable and understands its importance. There are so very many who DO NOT GET EVEN A CHANCE to see if therapy could help them....

I know it made an impression. I could see it in his eyes. I think that when this issue comes up again for him, he will not disregard it or shrug it off. He will remember J-man, the little boy in the video, and he will spend a little time learning more and being open to the issues. And maybe... just maybe... help be part of a real solution. That is the power of telling your story.

So I guess that is why I got ~~suckered~~ talked into doing this crazy stuff. Because in the end, if I am not part of the solution, who will be? I might be 'just a mom', but I am J-man's mom.

And J-man matters.

Friends

2012-02-08T13:47:00.000-08:00

I want J-man to have friends.

I think all parents want their children to have friends, right? Well, except that psycho mom from the movie Carrie. And maybe that mom from the movie Throw Momma From the Train. But, you know, their attitudes resulted in some unsavory consequences.

I want J-man to have friends. And when your child is on the spectrum, relationships are hard, and language is hard, and processing is hard... friendships become hard too. Hard for the ASD kiddo, and hard for the neurotypical kiddo, and hard for parents. Cause, you know, no one knows what to do! Or how to do it or how to explain it or how to manage it or how to understand it. It is just harder.

J-man's therapists have started working on social play skills, and we are getting some favorable feedback. The trouble is, of course, J-man doesn't always respond... or the other child doesn't respond... and the shared moments are lost due to whatever it is that impedes it. Sensory processing? Language barrier? Attention issue? All of the above? None of the above?

Social communication relies on mutual give and take. And if one... or both... of the actors are grappling with autism, it could be hard to get them engaged with each other. So I had a thought... what if we had a playdate for J-man at his program? With a neurotypical kiddo. And not just any neurotypical kiddo... my friend's son G-man... a wildly social, verbal, and engaged playmate. Who just happens to really like J-man and wants to be his friend. Could they become good playmates for each other with some facilitation from J-man's therapists and us? Could G-man develop an understanding and appreciation J-man even though he 'plays differently' and doesn't always respond? Could G-man's persistence (which he has in spades) draw J-man out?

Could they become real friends?

J-man and G-man

So today, G-man and J-man had a facilitated playdate at his program. It was a first trial, and we were not sure if it would be a good idea or not. We drank coffee and waited. And wondered. And talked about all kinds of things while we waited and wondered. I am sure my friend was nervous. I mean, she just left her G-man with a bunch of strangers. Frankly, I think she deserves a reward for her willingness to try this! (I adore you, Ms N!)

And as G-man came out into the lobby at the end of the playdate, G-man cried to his mom...

"Mom! I don't want to go home! I want to stay and play"... YES!

Apparently, it was a huge success. J-man's therapist said it went fantastic! She said that there wasn't a whole lot of engagement during 'quiet play' (cars, trucks, etc), but during gross motor movement and action play there were wonderful exchanges between the two boys. She said they would love to have G-man back again, and that they saw real value in working with the boys. YES!!!

It is a first step and I hope it leads to great things!!!

Six More Weeks of Winter?

2012-02-02T18:45:00.000-08:00

Five years ago today, J-man was born. The high that day was -10 F below zero. It was Groundhog's day. Clearly, when Mr Groundhog poked his head out and saw it was -10 below zero, he turned his furry butt around and said "c-ya in six weeks, suckers!" Every year since, Mr Groundhog has poked his head out, gave the skies an evil eye, and high-tailed it back underground for six more weeks of winter. Withdrawing and hibernating in his little cave.

According to the folks in Pennsylvania, Mr Groundhog did the about face again today. Six more weeks of winter.

But I beg to differ, Phil. I feel spring in our air. I see J-man starting to bloom. I think our winter is nearly over and we are going to be seeing the sun. So go hide in your hole, Phil, if you need to.

We are emerging.

Highlight It Blue LAUNCH

2012-01-30T09:40:00.000-08:00

Wow.

I am doing it. It is REAL. We have a location, we have a stylist (with more to come!) and we have a plan! I am so excited I can hardly stand it! If you are in our neighborhood, please check out our FB page and join us!!!

So, I have had a few of you loyal readers (I am still shocked I have loyal readers) ask me how to do this? Since I am making it up as I go along, I will give you my recipe. Alter to taste!

1. Pick a local autism charity group. There are a lot of wonderful causes out there... my take is consider a group that is doing wonderful work at a local level and fundraise for them. Go bigger if you like, but I love the idea of raising money for the people in my own community.

2. Find some amazing stylists who are willing to volunteer their time. Partner with them to get the materials and to set the donation you will ask for.

3. Find a place to do it.

4. Advertise... flyers, posters, Facebook, etc.

5. Organize people to help run it. Friends, family, etc... you might even consider other organizations like therapy centers to volunteer their time for a little free advertising.

6. Hold your event! Provide A TON of free information about autism so that the Highlighted can go out and educate the world!!! Or at least the old lady at work who will wonder why you have blue in your hair!!!!

Let's Highlight It Blue!!!

What No One Ever Told Me

2012-01-27T21:09:00.000-08:00

You know....

... when you dream about having kids there are many things that you never think of.

You know you won't get a lot of sleep. You will probably be a little poorer in the wallet (but richer in the heart, of course). Your relationship with your spouse will become different. Your time will not be your own. And of course, you know that you will change.

But there are some things... some specific things... that just never occurred to me. Believe it or not, it wasn't autism. That actually did occur to me. Heck, I am an NICU nurse with multiple degrees in developmental psychology... I am sure you can't even begin to guess the number of different things that did occur to me. I promise you... I over thought the whole thing.

But boy, I missed some stuff.

Like Power Rangers.

Did you know there are 17 different Power Ranger series? Not shows.... series! Did you also know that you can get all of them on Netflix streaming? Yes, you can. And did you know that... if you watch them often enough..you might actually begin to rate your favorites? Become involved in plot lines? Slowly see your brain cells whittled down to the point where you actually keep watching it even when the kid has left the room?

So tonight I was hanging out with the J-man watching the newest series he has discovered (Power Rangers Wild Force), when a thought crossed my mind.

'Hey', I thought, ' I wonder if any of these actors ever did anything else after they were a Power Ranger? I mean, all those Disney kids get contracts to eventually be in some movie... but the Power Rangers? I don't think I have seen any of them go on to fame and fortune. Is being a Power Ranger the kiss of death for one's acting career?'

I couldn't get this thought out of my head. Big Daddy said "Google it", so I did.

Did you know that Wikipedia has an exhausting source of information on the Power Rangers? And every Power Ranger actor there has been? I found myself doing research about what other shows the Power Rangers actors have done outside of the Power Rangers domain. I stuck mostly to my favorite series, Power Rangers Jungle Fury.

(Yes, I have a favorite series. Don't judge!)

What I learned was that most of them went on to do other kids shows or some more B-rated stuff. You know, the "straight to video" stuff. But then, I discovered that my favorite Power Ranger,

(Yes, I have a favorite. Weep for me)

Wolf Ranger RJ... aka David de Lautour.. is in the new Fox series Touch. Which is coincidentally a show about an autistic child whose ability to see patterns gives him some kind of superhuman ability to predict the future. I haven't seen the show yet, so I have no idea if it is any good. Anyhow...

And I feel like I have come full circle.

Then I realize I have spent a good chunk of time cruising the Internet looking up the career paths of Power Ranger Jungle Fury actors, and know that I really need a life.

Seriously.

Lord help me.

Highlight It Blue

2012-01-15T13:19:00.000-08:00

So, I had this genus idea. Dye my hair blue for April, which is Autism Awareness month. In reality, it is because I am over 40 and want a reason to do something super funky with my hair.... Cause, you know, forty year old mommies can't just dye their hair blue for FUN.

Autism Speaks has a campaign they do every year for Autism Awareness month called "Light it up Blue for Autism". They encourage people to change the exterior lights of their homes to blue to display support and encourage awareness.

Dude, we live on a circle. We have maybe 6 neighbors who would see it. Not enough! Plus, how am I suppose to educate ANYONE on autism with a blue light? Like someone is gonna stop at my house and say "hey, what is up with the blue light?". No, we need something more "in your face". Something I carry with me. Something out of character.

Blue hair.

And one thing led to another and.... allow me to reveal my latest effort:

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Highlight It Up Blue for Autism

Creating Autism Awareness while looking Super Fly

Highlight It Up Blue is a local autism awareness campaign and fundraising event that we are looking to launch at the beginning of April.

The Purpose: Provide people opportunities to learn and educate about autism through sporting funky blue hair extensions for the month of April.

How it works: For a small donation to United for Autism, participants will have blue hair extensions placed in their hair by our volunteer professional hairstylists. They will also be given education materials about autism, and be encouraged to spread the word about autism: what it is, how it affects children and adults, and how we can help. We will encourage these participants to pass on the word by educating their friends, family and even perfect strangers about the purpose of their super-fly blue hair extensions.

Who it is for: Anyone!! Old or young, male of female! (well, I guess you do need hair?) Let me know if you want to be on our email update list to participate!!!

Wanna help? Contact me pia.prenevost@gmail.com We are still looking to solidify a location for this event! Volunteers welcome! (Super Fly poster draft done by Tahni Cullen.)

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As you can see, I am still in the beginning stages! In addition to a awareness campaign, I have also decided to use it as a fundraising effort for United for Autism, a local group providing support to families dealing with autism in their lives. They do education, seminars, and provide sensory friendly activities for our ASD loved ones. How cool is that! I am keeping it local, cause you know... that is how I roll. But if you live elsewhere and want to blatantly steal my idea, go for it!!! Wouldn't it be cool if there was a whole lot of blue haired old ladies (or men) running around in April?! And by blue, I mean BLUE!

FEEDBACK PLEASE!! Thoughts and ideas!!!! Yes, YOU!

And for those who Doubted ...

2012-01-13T20:46:00.000-08:00

... I present to you....

J-man reads "There's a Mouse in the House"

See. I wasn't crazy or delusional. Do NOT underestimate the J-man.

Glows

2011-12-31T19:31:00.000-08:00

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.”

— Paul Collins

"I saw the angel in the marble and carved until I set him free" - Michelangelo

Michelangelo could have used many methods to create his sculptural masterpieces. He could have taken a piece of marble, crushed it up into powder, mixed it with a combination of sand, cement, water, poured it into a mold, and TA-DA ....He could have made something like this:

But he didn't. Instead he made this:

He could have claimed that he created the angel out of the marble. But he didn't. What he says is that the angel was there all along. He saw it in there. He let the marble guide him, and in doing so he helped reveal what was there already. He didn't claim ownership of the internal beauty. He just helped set it free.

Did he have a hand in its creation? Sure. But if he had not respected the nature of the marble... if he not used proper methods and techniques and respect and care for that which nature provided... he would not have been the instrument in the creation of such beauty. Such beauty is not the product of ego or self focus.

It is the result of careful refinement of the senses to that which you are trying to reveal. It is about being sensitive to the nature of that which you work. It wasn't wood. It wasn't glass. It was marble, imbued with its own special properties... imbued with "marbleness".

Have you ever seen one of the true masterpieces close up? They glow. They capture the light in such a way that it seems like they burn from within. They are ethereal in beauty, as if God touched life into the stone. It is amazing to see.

When I think about raising a child with autism, I think of Michelangelo. I think of how he saw the angel in the marble. The beauty and truth of the child is already there, ready to reveal itself. The child is unique onto himself. You cannot look at the child and wish him to be other than he is. All you can do is see the true beauty that is the nature of this child. And with careful refinement of your own senses, you guide that child into revealing their very best.

That is what being child led is.

Imposing your will, imposing 'compliance', imposing your adult expectations and vision of what the child "should be" will only get you this:

But by following the child's lead, and by using your own sensitive engagement and guidance, you can help the child reveal their true essence. Their true beauty.

The neurodiversity movement stresses the idea that autism is not a disease. It is not an illness to be cured. Rather, it is a difference. A different way of seeing the world. A different way of being. And this difference deserves respect and understanding. I love this perspective, and yet I have often felt conflicted about it. How do I... J-man's neurotypical parent... help him learn to live in this world without trying to make him like his peers? How do I help him fit in and function here... in this world as it exists today? How do other parents of autistic children teach their child the ways of the world and how to make their way? When the way they ARE is so very different? When their world can be so confusing and scary and fundamentally different than the one I understand and know...???

For me, the right approach seems to be the child led one. I will meet him where he is. I will appreciate his talents and excellence. I will sensitively understand how he sees the world (well, to the best of my ability) and I will hopefully be able to guide him to the next developmental step. I will allow for his quirkiness... cherish it even! And yet .... like all parents.... I will teach him how to channel his energy and communicate his thoughts. Wherever he is at in the course of his life, he will know he is amazing.

And that he glows.

Blessings (A "Little Things" Post)

2011-12-26T20:34:00.000-08:00

Hey! I have been invited to take part in a blog meme by Lisa at Autism Wonderland called The Little Things are a Big Deal. I thought this post might be a good place for me to launch!!! So enjoy these little blessings and check out the other fine writers telling their big-deal stories!

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I am in a pretty good place right now.

I am tired... nearly exhausted... but in a very good place. J-man's autism doesn't bother me like it once did. I don't feel quite so lost. I don't feel quite so scared. Or lonely. I feel at peace with J-man, and therefore... by proxy... at peace with autism.

Not that we don't have struggles, cause we do. Not that I don't get frustrated. Cause I do. But most of my frustration is about how hard J-man has to work to communicate and make his way. And this boy works hard, my friends. I am constantly amazed at what these ASD kids do every day, dealing with a neurology that challenges them at every turn. And yet still they grow. Little by little, inch by painstaking inch, they grow. When you see it... when you hear the small triumphs that these kids achieve and know the efforts and barriers they go thru to get there... I mean, come on!!! How can you not be full-on inspired!!

I used to compare J-man to other neurotypical kids his age. There came a point when I sorta noticed that I stopped. I am not sure why. Maybe the gulf was so wide that there was no point. Or maybe it was because I refocused on comparing J-man to J-man. What have been his developmental steps? How has he changed from where he was to where he is? What is better, or even just different? What are the 'green flags' he is flying, and how can we build on those? I live in that place, most days. It is a good place to live.

Today, while I was in my bedroom getting dressed, I heard J-man on the monitor in his room. He had his new book, There's A Mouse in the House, on his bed and he was reading it. Word for mother-loving word. As I was listening to him in his broken speech, I realized that indeed, he was reciting the story nearly perfectly. I peeked around the corner into his room and there he was, using his finger to follow each word. Was he actually 'reading' it? Or had he just memorized the story? I am not sure I care, to be honest. He was 'reading'. I was so excited that I fetched the videocamera and tried to get him to read it again. Alas, it was not to be... but that was ok. Instead, I got this little snippet of video that is classic J-man.

What you need to know about this video is this: I believe that he is telling me about watching Netflix and Power Rangers. He is telling me a story about that. I think he might also be telling me that after watching Power Rangers we are going to Target. Then I try and push the story thing (stupid adult agenda!)... but not too hard I hope. He tells me he loves books. And that he wants a different one. And that he wants to go to Target.

What you will notice is that there are times... many times... that it doesn't seem like he is really saying anything. And maybe he isn't. Maybe he is making noise to fill in for words that he knows should be there. But I think... my gut tells me... that in his head those words ARE there, but his mouth cannot get them out. So I treat all of his speech as intentional and deliberate. He is communicating with me. He is telling me something. Even when he doesn't speak, he is communicating with intention. I guess I believe all ASD people are. We just need to be smart enough to bridge the gap to meet them halfway.

Progress in Pictures

2011-12-22T10:49:00.000-08:00

What a difference a year (or two) makes...

Two Years Ago

Hated Santa

Last Year

As close as he would get

Christmas Party, This Year

He said "Hi 'Anta"

The Thinking Person's Guide to Autism

2011-12-18T19:25:00.000-08:00

It isn't just a uber-famous website filled with insightful, well written commentary on autism.

It is now a book. One review says of TPGA's book:

"Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person's Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum
and those who love them."

-- Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the
Public Library of Science (http://blogs.plos.org/neurotribes/)

Sounds pretty sweet, eh?

What if I told you that I was one of the contributors?? I know, right!?!?!?! I am freaking out!!!

I will admit... I haven't read it yet. But I looked at the contributing authors list and was WOW'd! Launch day is tomorrow, so if you are interested in reading some amazing work by some amazing people (oh, and something by me... how did I sneak in there???), check it out on Amazon!

My copy is in the mail!!

The Making of a Gamer

2011-12-17T21:02:00.000-08:00

Big Daddy is a gamer. He was a gamer when I met him. He remains a gamer to this day. And I can foresee J-man following in his esteemed footsteps.

The household Christmas present was revealed today. Big Daddy bought J-man a Kinetic for the X-box Clearly, we already have the X-Box.... I mean, Big Daddy is a gamer. Duh. Kinetic is a extension to the X-Box that essentially allows the player to just wave their hand at the TV and things happen in the game. Kinda like the Wii, but with no controller whatsoever. I am sure that there is more to it than that, but I am not a gamer so I am not sure I care.

What it does mean is that J-man can just move his body and play a video game. He is in love with this sh*t.

His favorite so far is Fruit Ninja.

Fruit Ninja basically involves hiii- ja - ing your arms frantically into space and magically the character in the game chops up flying fruit. J-man learned the concept very quickly and managed, in one short hour, to beat the crap out of Daddy and me.... score wise, of course.

It is quite a work out!

No real point to the story. Just had to tell it. We had honest fun. Pretty sweet!

The Nature of Keyboard-ness

2011-12-14T20:33:00.000-08:00

This is a piano.

Wait...or is it a keyboard?

Or is this a keyboard?

What makes a piano a piano? What makes a keyboard a keyboard?

What gives something keyboard-ness? Or piano-ness?

Pianos are:

* Often, but not always, made of wood.

* Tend to have legs, but not always.

* Have keys, black and white.

* Those keys make sounds and music.

In contrast, keyboards:

* Tend to be electronic.

* Have keys, but can have keys with letters, numbers, symbols, and or be black and white.

* Can be used to make sounds, play video games, amuse mommy on the Internet, make daddy be really serious on the phone or make music just like a piano.

So which word more accurately describes this object?

One of the things I hate about ABA is that they seem to be as stuck and rigid in their protocols as some of the kids they are suppose to treat. So, a little background on his program…

J-man is in an Applied Behavior Analysis-Verbal Behavior program with a "natural environment" component to it. That means he spends a small portion of his day doing "table tasks" (i.e. discrete trial stuff) and the larger portion of his day playing in the natural environment and putting those skills to work. There are some benefits to discrete trial stuff, but I often have huge issues with it. Indeed, I have been struggling with a love-hate relationship with ABA-VB. Don't worry, I am working on a blog post... heck, probably a series.... about the pros and cons of ABA-VB. But that is a major project... and I just want to vent about this one pet peeve. Consider it a taste test of some future blogging moments.

Every day J-man has a little written note that comes home with him that documents what he did that day, things he is accomplishing in his program, and what he is still working on (or struggling with).

Lately, he has been stuck on the word "keyboard". So here is the "problem" (and I use that term loosely).

During his 'table time' (ITT, or discrete trial time), he goes through various exercises that are fairly rote, not terribly interactive, and bent on teaching simple skills like labeling objects. J-man typically kicks ass on all these tasks. We are often told he masters tasks very fast, sometimes within a day or two of being introduced a task.

He really isn't there because he can't learn, people.

Anyway, the last week or so we have been getting updates saying that he is getting stuck on the word "keyboard", and could we practice labeling it at home. Our therapists explain that they show him a picture like this:

And instead of saying "keyboard", he says "piano".

And of course, because the curriculum calls it a keyboard, they have to get him to call it a keyboard.

Are you kidding me????

One of our (sweetest) therapists explained that if it was in the "natural environment" (NET), they would accept piano. Well, of course they would!!! Because in the real world if I called this a piano, you would probably agree with me. In fact, you may even call it a piano too. It may not even occur to you that it is also a keyboard because let's face it:

THIS is a keyboard for most of us.

This illustrates one of my biggest pet peeves about ABA. There isn't an allowance for creative or critical thinking. Piano doesn't count because it is during "table time"... and the curriculum says "keyboard"... he has to say keyboard to show he knows what it is.

Are you fucking kidding me????

And at what stage, exactly, should a child developmentally be able to make this distinction? Do they actually know this? And why exactly is it important?? It wasn't like he called it a flute, for crying out loud. Or a pickle. Jeeezz...

The meaning of words (semantics) is a language skill that develops over the first 10 years of life. The ability to understand that one object can have multiple names, and that those names are not always stand alone in the what they can mean, develops over time...and speech-language pathologists don’t even test for this skill until a child is over the age of 5. So developmentally, the fact that J-man is selecting to use a word that frankly... in my opinion... is a more accurate description of the functionality of this object and is less confusing than the term keyboard to me seems.... I don't know... extremely appropriate.

But then what the hell do I know?

I am just a mom, right?

I Just Need This!

2011-12-13T19:26:00.000-08:00

Would you like a little glimpse into what it like get J-man out of the house in the morning?

It is much like this scene from the Jerk.

I just need one more thing.... wait wait.... one more thing... wait, potty....

He moves about as fast too.

And he is often in this stage of undress.

Just thought I would brighten your day.

Cracked Poetry: An Ode to Stress

2011-12-07T09:27:00.001-08:00

I am starting a new series: Cracked Poetry. Poetry about real life, real things, and real problems. And it can be really funny too. No poetry about trees or flowers or fluffy clouds need apply. But if you want to write a poem about washing the dishes while your toddler tantrums on the kitchen floor, please do. Please feel free to submit. It doesn't even need to be good...

To open the series, here is a poem I wrote last night. Enjoy.

An Ode to Stress By Pia Prenevost

Stress is my bedfellow

He steals my pillow

And farts under the covers

Laughing as I gag.

Stress is my dinner date

He suggests pasta Alfredo

and cheesecake

Smirks when my jeans are too tight.

Stress is my lover.

He holds me too tight

He takes all my time.

He is jealous of my joy.

My friend says Stress is a dick

But she sleeps with him too.

Stress gets around.

Let's face it...Stress is a whore.

I should kick Stress to the curb

And change the locks.

But he is like a nail fungus

Impossible to get rid of.

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(Note: In no way is Stress 'code' for my hubby. Just so you know. My hubby rocks!)

Negotiation by J-man

2011-11-25T18:25:00.001-08:00

This is how J-man negotiates.

If this isn't progress, I don't know what is.

PS: If you can decipher the few words I am stymied by, you win a gold star! All reasonable guesses will be posted and open for voting!!!

PPS: "Noodles" refers to Mr Noodle from Elmo's World. Mr. Noodle is a comic mastermind. Just ask J-man.

A Normal Life and Other Crazy Talk

2011-11-20T10:59:00.001-08:00

Photo by PaperWings Photography

A shift is happening here. It is weird. It is unexpected. Complicated. A little frightening.

We are edging a little bit closer to normal.

Egads!!! Not THAT!

Not J-man, mind you... he is still his fabulous self! He has gotten much more vocal, verbal, and opinionated, all good and frustrating things. His intelligible vocabulary is increasing daily, and his use/desire to communicate is happily expanding. We are happy. He is happy. All is well.

"Normal" comes in the form of "what other people's lives are like". As in... jobs, lifestyle, time, energy... all the crap everyone else does day to day. You know, "normal".

"Normal" means we managed to find a babysitter. In fact, not just one but TWO babysitters. Two sisters who live down the street from us, who are young enough to still love playing with little kids but old enough to be responsible. Two delightful young ladies who just happen to have a brother with autism. Who understand autism. Who get it. I mean, seriously...

It is like hitting the babysitter jackpot.

What this means is that now we do not have to rely solely on Mumu to babysit (which is good since Mumu & Papa are snowbirding this winter 1000 miles away). It means we can have regular date nights. It means we can make last minute plans with friends... go for dinner... laugh and have a few drinks... guilt-fricken-free. And might I add, J-man adores them, and has from the first moment they came to the door. Intuitively he just knew. It might seem like a small thing, but it is HUGE.

"Normal" also means big changes in Mommy's department. I applied for... interviewed...was offered... and accepted a new role at my work. I am going to be a clinical educator in my unit, which is both a huge change and an exciting one. I need to do this. Now is the time and opportunity. It is something I really want.

And yet...

.. of course, I am a little nervous. Or a lot. Or is the word "freaked out"? Not just about the job itself... I feel okay about that. But what is going to be the effect on J-man?? I will be working a lot more. He will start going to his program full-time now. I have my concerns about that (to be addressed in a different post). Some guilt. Or a LOT of guilt. If all goes well, it will be wonderful. If all goes sh*tty, then it is my fault. Yeah, nice thought.

Plus my house will probably become a disaster. Or more of a disaster than it already is. Big Daddy will have to take on some new duties which he says will not be a big deal but.... well, let's hope... All in all, though, not a bad problem to have. Not bad at all.

Of course, I am safe in the knowledge that J-man is unlikely to let our lives get too normal. We will... no doubt... continue to let our freak-flag fly proud. I think that sounds just about perfect.

"Too Loud"

2011-11-09T15:15:00.000-08:00

This is new for J-man.

And if you were just observing this behavior in isolation, you might think that he is having a sensory reaction to the volume of the movie. He has done this "hands-over-ears-too-loud-too-loud" behavior again and again over the past several weeks to different movies and at different times. He can be perfectly happy and content with the volume at one moment and suddenly "too-loud-too-loud". So is this some kind of new hypersenstivity to sound???

I don't think so. And here is why...

In this particular clip, we are watching Cars 2. Mater, the best friend to Lighting McQueen, is on the phone with one of his competitors arguing about how great Lighting McQueen is. Eventually, McQueen gets on the phone and has a little verbal sparring with the other car. It is a low key, kinda cute exchange.

J-man also does "too-loud-too-loud" to the Lion King. It is always at the same scene.... no, not one of the many scary-ish battle scenes. He does "too-loud" when Mufasa lectures Simba about being responsible. He does "too loud" to the movie Cats and Dogs when the evil white Cat is about to get a bath from the maid. And he does "too loud" to Happy Feet when Mumble is being lectured by his dad. And when Lilo's sister yells at her in Lilo and Stitch.

I don't think this is about volume, do you??

There is a lot of controvery about whether or not people on the spectrum are senstive to emotions of others and exhibit empathy. It is a topic that generates a lot of discussion. Well, my 4 year old ASD boy covers his ears and is upset when the (negative) emotional content of a movie becomes too much. What do you think that means???

I Never Do Product Reviews, but....

2011-11-07T16:39:00.000-08:00

... I am going to pass on a few products and resources that I have come across that I think are worth it! As always, my review policy is in effect.

Cozy Calm Weighted Blankets
I ran into these blankets over a year ago at a local Home and Garden show and was in love. Ages ago we were given a weighted blanket of the scratchy, plasticy variety and J-man hated it. He hated the weighted vest too. Anyhow, when I saw these blankets at the show, I thought that it looked perfect. They came in a few different fabrics at the time, so I purchased a fleece child's small blanket. The weighted material inside is made up of small plastic beads, which I did worry might come out or melt with washing and drying. They did neither. In fact, the blanket is washer and dryer safe and holds up wonderfully. The blankets come in several different sizes and weights, depending on one's needs.

J-man still didn't like it. I figured weighted blankets weren't for my boy...UNTIL the last few months.

Over the last few months J-man has had a major case of the bedwiggles. He fights bedtime more than he ever has before, and tosses and turns with just a little too much energy. Since I lay with him as he falls asleep, I noticed the change right away. So I dug out the Cozy Calm blanket and tried it out. It settled him right down... enough to let him relax and fall asleep. Now it is a standard part of bedtime, and WE love it. I am now saving my pennies to buy my own and a bigger one for him. It is awesomesauce!

The Autism Shop
This is both a brick and mortar store (located in the Twin Cities) and an online store, and I must say: if you can't find it here, I am not sure it exists. We dropped into the shop for the first time last spring while they packing up to move locations, I was impressed with the breadth and depth of the products they had there. I was a little like I kid in a candy store. So anyway, if you are local, check it out. If not, check out the online store.

ASD and Me by Teresa DeMars
Full disclosure time: I won this book as a door prize. But it is a great book to introduce the idea of autism spectrum disorders to other children, as well as an affirmation for children on the spectrum. It is a little over where J-man is right now, but I think it will be a great resource for the future.

Faces of Autism: Stories of Hope 2012 calendar

Ok, shameless plug. The Faces of Autism: Stories of Hope 2012 calendar is a charity calendar put out by a local organization called United for Autism. And J-man is Mr April!!! I mean, reallllly... who knew my little man would be a calendar model!? The whole project was volunteer driven, with some amazing photos taken by Tera Windfeldt Photography, and all proceeds go directly to United for Autism. So, if you have any interest in an awesome calendar for an awesome cause, with an AMAZING Mr April, consider ordering one of these calendars!!

So there you have it... products I wanted to turn you on to. Let me know if you have a product or book that you are loving right now! I always like to find new stuff!!

Six Random Things to Know about Becoming a Mother

2011-11-04T19:51:00.000-07:00

(Warning: I curse a bit in this one. If you have tender eyes, skip it)

A friend of mine posted on Facebook today the following question:

(We) are Talking about maybe possibly bringing a baby into the world. Pros / cons: GO

The responses were much like you would expect: no sleep, poverty, no sex life, unbelievable love and connection, hardest job you'll ever love, etc etc etc. All very true. But it did occur to me that there are a few things that no one ever really talks about when the idea of having a child is considered. And while these things are completely random.... and are not necessarily "con" or "pro"... might be nice to know. Since I am a mom, of course, these are going to be things about being a mother. But some do apply to the father role as well. Or the two-mom or two-dad scenario, whatever the case may be. So, without further ado...

Six Random Things to Know about Becoming a Mother.

1. Your uterus might fall out. Or bladder. No, seriously. All the ligaments can get stretched out from the pregnancy and boom! One day you are standing in line at Target or giving a presentation at work, and suddenly it feels like you have a baseball in your panties. And by the way... this can happen 20 years later! Time is not your friend.

2. Everyone says you will never sleep again. Not true. There may be several years where you don't get a solid night's sleep, but yes Virginia, you will sleep again. You may suffer a little PTSD around your lack of sleep experiences, where you become obsessed with getting sleep and making sure the kid sleeps. And you most definitely will never, never, ever take sleep for granted again. Ever. And "sleeping in" is getting up at 8am. But you will sleep again, I promise. Someday.

3. You will fuck up. There are no perfect parents, only shades of shitty, and you will strive to not screw up too much. Lord knows I work hard to stay on the "tan" side. But you will not be perfect and you will fuck up and that is just the truth. Do the best you can, admit when you screw up, and try and learn a better way. Oh, and avoid any and all behavior you might see on a reality TV show.

4. Your kid will not be perfect. You may even end up with a child who has some very significant challenges *ahem!*. It happens. Perfection, however, is only for storybooks and fairy tales, and frankly is boring. There is something amazingly beautiful about seeing that little person be that little person.

5. It will be years before your house looks like your house again. Mostly, it will look like a daycare threw up in it. And you will try and have a "dedicated playroom" for all the toys and you will probably fail miserably. Just accept that your decor' will be Fisher Price for a few years. And your TV will not be your own.

6. You will be changed. Forever. Period. How you are changed is really up to you and your child, but have no doubt whatsoever you will not be the same person. For me, I have become snarkier and a little bitchier. In a good way. The Green-Eyed Monster Mama was born and she ain't playing around. I have also become keenly aware of what it means to "not sweat the small stuff". With the J-man, I have gained significant perspective on what is really important, and that is something that I know I just couldn't have learned with being his mommy. I became an adult. Not the "pay-my-bills-have-a-job" adult ..... I already was that (no, really, I was!)... but in the "this is what real responsibility is" kind of adult. Daunting, liberating, scary, and whole.

I would never trade it. Even with all the challenges. Maybe because of the challenges... I am more and I am better and life is sweeter.

But just so you know: Wine helps.

Channeling Michael Jackson

2011-11-02T20:16:00.000-07:00

The other day J-man did something that was completely new for us.

He came running to me to show me his "owie".

Now, by "owie" I don't mean a real, honest-to-goodness injury that would leave a child bleeding and crying. No, this was that tiny-scratch-you-can-barely-see kind of owie. He came running to me... genuinely concerned... wanting kisses and comfort and a solution to this microscopic gaping wound.

I offered a band-aid.

I offered a band-aid knowing that J-man hates band-aids. Always has. Other children might be covered with band-aids from head-to-toe, but J-man wants nothing to do with them. (Note: This is from the kid who did THIS.) But hey... what else could I possibly offer? Dermabond? An ER visit?

So I offered a band-aid. And he said yes. He said yes as he "fake cried" his way to the bathroom with me in search of said band-aid. Being fairly shocked and somewhat skeptical, I found a small band-aid in the first aid kit and offered to put in on the "owie". It was then J-man realized that no, he really didn't want a band-aid because he hates band-aids.

"No ban-ai! No ban-ai!" he shouted at the top of his lungs. He looked perplexed for a moment, and then came up with a fairly genius solution. He said, emphatically, "loves!"

Huh?

As he chanted this word in an ever-escalating panicked voice, I tried to decipher what he was saying. And then it hit me....

Gloves.

Holy Crap. He wants to wear gloves to protect his 'injured' hand. HOLY CRAP!!

Allow me to note at this time that J-man has never, ever worn gloves. Period. Lucky for me I had just purchased a set of small boys gloves and so we got them and put them on. And he kept the glove on. All day. All night. All the next day. He wore it to eat. He wore it to sleep. He wore it to our Halloween Party and Trick or Treating.

Two days later, the glove is finally gone. And the wound is healed. That, my friends, is alternative medicine.

The Glove
(Ignore the chunky witch next to J-man)

Happy Halloween

2011-10-31T20:23:00.000-07:00

I was a little worried about today.

J-man woke up on the wrong side of the bed. Grumpy and tired, his favorite word was "no". He took it to the extreme this morning, refusing to go potty. Until 11am. Yes, you read that right. He "held his water" from 8pm the night before until 11am. Now, that's a super bladder and a stubborn streak!!! The rest of the morning and early afternoon seemed to follow this course: "No" to anything/everything I said. Period. But he seemed to get over it by evening and trick-r-treating went awesome. He loved his costume, he loved all the other costumes. He loved the door knocking, the saying "trick or treat", and getting the candy. And he doesn't even LIKE candy.

Halloween is truly J-man's holiday.

Epic Fail

2011-10-30T20:32:00.000-07:00

Okay, maybe not EPIC, but I have been a bad blogger. I haven't posted since October 13th!!! And you will have to wait a bit longer. The truth is I am wiped after work and J-man. By the time I have the time, I have no words. I also need the pillow. Sweet, sweet pillow.

I will make it up to you, I promise. In the meantime, a picture of J-man with some pumpkins. Enjoy!

How to Know When Your Autistic Kid Is Potty-trained

2011-10-13T18:11:00.000-07:00

We walk into the house after an obscenely long commute home from therapy. J-man carries his chicken nugget bag in like it is gold. He is ready to eat, now! I run to the kitchen to fetch a plate and ketchup as J-man sashays up to the table with his Golden Arches prize. I do this strange, exotic, weaving dance as I quickly deposit plate and ketchup on the table and hoist his rear into his chair.

I have to pee. Bad.

As I sprint to the bathroom, J-man screeches at the upper range of his vocal cords, "'Lion King!!!".

(In the spirit of full disclosure, I must confess that The Lion King is the new favorite and has been dinnertime viewing for the last week. Yup, Mother of the Year. Chicken nuggets and TV, the American way)

Lucky for my bladder, Lion King is already in the DVD player and ready to go. One push of a button and we are off to the races! And boy, did I race!

Just as I get "settled in", I hear the thud of little feet heading toward me. Crap, J-man is coming to pee too!! Will I get booted... midway, so to speak... or will he be willing to use the potty chair? I offer a silent prayer to the Goddess of Kegel Muscles as he comes barreling in. My prayers were heard.... he chose the potty chair.

Just as his bum hits the plastic, however, the beginning strands of the Lion King flow into the bathroom. J-man's eyes go big and round. He jumps up and "runs"... underwear around his ankles.... to the living room. I quickly follow (fully clothed) and tell him "No worries... I will pause it. Go potty, honey!".

"No potty!!" he says.

"Yes, go potty! You just went in there to go! It's ok." I say.

"NO POTTY!! LION KING!", he shouts as he pulls up his pants.

"Okay, okay," I concede, silently consoling myself that maybe he didn't have to go that bad.

J-man settles on the sofa, chicken nuggets forgotten. Feeling much more relaxed, I wander to the kitchen to rustle up something to eat myself. Big Daddy comes in and we chit-chat for a bit, and then we wander back to the living room.

And there is J-man, at the DVD player, trying to stop the movie with one hand while pulling down is pants with the other. He has a combined look of determination and panic as it becomes clear to me that he is trying take the DVD out. It is also abundantly clear to me that yes... indeed... he does have to go to the bathroom. NOW.

As Big Daddy and I laugh at this half-exposed bum, J-man pulls the disk out of the DVD player and races (pants halfway down) to the bathroom.....

... and makes it!!!

(Might I proudly add that it was #2, too.)

And that is how you know when your autistic kid is truly potty-trained!

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Once again I am thrilled to be highlighted by the folks over at Best of the Best! Check out this months very very funny blog posts!

The Season of Change

2011-10-12T20:44:00.000-07:00

Just a little update...

J-man and Big Daddy

With change comes more change.

J-man is changing so fast and furious that it is hard to keep up or take stock of the changes in any sort of cohesive way. He is talking. Not consistently, but often enough and with enough real communicative intent that I can say he is talking. He is using sentences. Mostly 2-3 word, but every once in a while a longer, complicated one comes out and I spend several very long seconds trying to decode what he tried to say.

I usually fail.

Good-bye diapers?

J-man is officially 99.9% potty trained. He goes on his own, doesn't need (or want) prompting. He has had several meltdowns at his program because they were working on potty training from a toileting schedule perspective (go at regular intervals... like every hour... and reinforce attempts). One day last week, J-man just decided he would have none of that. He starts a round of temper tantrums when they would try and make him go. Over the weekend I just decided that hey... it's his body... he should get to decide when he goes to the bathroom. So I would ask "have to go potty??" and leave it up to him.

Only one accident. At Target of course. And number 2. Awesome.

I promptly informed his program to back off on the whole 'forced potty' thing. He gets it. It is his body, and he gets it. They have, and so far no accidents this week. He still wears a diaper at night, but only because I am too chicken-sh*t to risk it. He stays dry, but I cannot handle the pressure.

Nonetheless, I think this might be the last pack of diapers I will have to buy. Ever.

(yes, I know I have just jinxed myself)

Yet with all these great changes... and they are uber-great... come the meltdowns. Think nuclear. Chernobyl-like. Over such important things like "who gets to carry his backpack" and "who gets to pour the juice". I am going to make the huge assumption that the reappearance of Melt Down Man is rooted in all these new changes, as he learns to adapt to the New Skills.

Cool beans. I will just put on my helmet and hide under my desk. Duck and cover, my friends. Duck and cover!