the crack and the light

Little Losses

2012-05-10T22:03:00.002-07:00

Let me tell you about little losses.

When we were in the throws of the early times... first assessments, first therapies, first fights, and first diagnoses... many many sad thoughts floated through my mind. It wasn't just the "my kid as a disability" crap, although that was most definitely there. It was the little losses... or potential losses... that seemed to swell up to an unbelievable pitch in my mind.

He couldn't talk: Yeah, that sucked.
He wasn't engaged: Yeah, not fun.
Meltdowns and Mayhem: Ugh!
What would the future hold? Yeah, that question monopolized my brain.

But it was the little losses that seemed to be the most sharp. At Christmas, he didn't seem to understand... or maybe care?... about Santa. Little loss. He showed no interest in books or (more important to me) having me read to him. Little loss. He hated singing, especially anyone singing to him at all. No "Happy Birthday" songs for him. No "Wheels on the Bus" on the car rides home. Little loss. The sweet little moments that I anticipated would come my way as a parent seemed elusive and unattainable, and for me that was a loss. A little loss.. but like a paper cut... it still stung.

I tried to just set them aside. Those moments were not for us, after all. We are on that different path, and it is still a good path. It was up to me to see the beauty in this, and spending too much time dwelling on the little losses was futile and counterproductive to building a good relationship with the Amazing J-man. So I man-ed up and moved on, and tried not to cry when a little loss snuck up on me and bit me on the ass. It happens, but it does not do to dwell.

But you know what? I think that many of those little losses are proving to be temporary.

Last week, J-man said to me, clear as day, "Make cookies?"

I was stunned, to say the least. Not that he said "make cookies"... but that he wanted to make cookies with me. Seriously? Be still my mother-loving-heart! I can count on one hand the number of times I have tried to get him engaged in cookie-making, and can honestly say that only once has he even tolerated my "forced" attempt at having one of those moments. You know, sometimes you just ache for what you know, for the things from your own childhood...

Anyway, I replied back, "You want to make cookies??"

Yes, yes, cookies.

Well, I jumped on this like house-afire! I actually sent Big Daddy out to the store for chocolate chips as we started making the cookies, because I did not want to lose this moment. He pulled a chair up to the counter. He helped measure the dry ingredients. And the wet ones. He cracked eggs with me, hand-over-hand. He even helped with the mixer, one hand on the handle and one hand covering his ears (because it was too loud, of course). He licked the cookie-dough-and-bacteria-laden beaters (and I didn't care one bit!!!). He helped me spoon out cookies onto the cookie sheet. And he waited for them to bake, looking in the oven a couple of times to see if they were done. And then ate one with gusto.

And two days later, during snack at his program, he told his OT that HE made the cookie he was eating.

Yeah, I know... right?

Now in the car, he has favorite music from the soundtrack to The Lorax. He lets me sing along. And he tries to sing too. He asks for this one by name.

And this one... he sings this one in a very J-man way.

And last week he wanted to plant seeds. What?? So we went to the garden store, bought dirt and seeds, and planted. And he 'helped" daddy seed the lawn as well, grabbing handfuls of the stuff and whipping it around the yard. (You know, my parents owned a greenhouse for 30 years. I have a brown thumb. I think maybe the green thumb skipped a generation??).

I used to yearn. I yearn no more.

It is his path, his way, and I shall no long dwell on the little losses. Because, to be honest, I am not sure they are really lost at all.

And Sometimes There Are No Dirty Looks

2012-04-26T07:40:00.001-07:00

We took a little trip last weekend to visit some friends. A little weekender to get away, hang out, do nothing special with friends who moved away but with whom we are still close.

Of course, we flew.

Those of you with special needs kids.... or heck, KIDS of all types.... know how nerve wracking traveling with children can be. The chaos, the lines, the overstimulation... and that effect is just on me! YIKES. So we planned ahead. Family security line: check. First on plane to settle in and avoid standing in a line: check. Snacks, activities, toys, movies, iPad: check.

A very excited little man: check check.

And he was perfect. By all standards, he was absolutely perfect. He sat well, following important directions, was engaged and interested in the experience, able to be distracted and coped beautifully with the overwhelming experience of traveling. So much so that when we landed, the lady sitting in front of us turned around to speak to me.

At first, I mentally cringed a little. I feared she was going to complain because J-man had been kicking her chair or something. He wasn't, but you know.... reflexively defensive instinct, I suppose. But instead she complimented him on what a wonderful job he did on the trip, and how well behaved he was.

Uh, what?

Not that J-man wasn't well behaved. He was amazing.

But did I just hear someone praise my child on his behavior? Really? Did that just happen?

I think I mumbled a surprised "thank you".

After disembarking, we had a quick potty break where the woman again approached me and repeated her compliment. I told her that J-man was on the spectrum, so that makes her compliment extra sweet since it is a greater challenge for him than most. She mentioned she was once a special education teacher and that clearly we are doing something right. After she left, she apparently found Dan in the hall waiting for us and repeated her compliment to him.

YIKES!

You know, I think that was the first parenting compliment I have ever received. Or at least, my first compliment from a complete stranger who did not know J-man's backstory. I think most special-needs parents get the evil eye because our children do have difficulty in public for a variety of reasons: overstimulation, difficulty understanding social norms, difficulty communicating, anxiety, and so on. Our kids tend to have difficulty behaving "as expected"... as a well behaved neurotypical child (and note: Not all neurotypical children behave well. Just saying.). Anyway, we receive more than our fair share of the Hairy Eyeball.

So to have the opposite. To get a compliment. And to know that somebody noticed all of his hard work.... well, it warranted a blog post.

ABA: Methods versus Mission

2012-04-16T13:58:00.001-07:00

Big Daddy with blue hair for
Autism Awareness and Acceptance Month.
It has nothing to do with the post,
but I just had to share it.
He is the coolest man on the planet.

Selecting a therapy for a kid on the spectrum is a little like deciding on a religion. Each therapeutic technique has its own set of beliefs, rules, objectives, and techniques... a little like religions.

What do you believe about autism? Is autism something to be "cured", to be "tolerated", to be "accommodated", or is it to be "celebrated"?

How do you think autism works? Is it a brain disorder, a neurological difference, a whole body disease?

What is the purpose of therapy... to change behavior?... to alter brain functioning?... to provide and adapt information processing methods to better fit the neurological picture?

What is the outcome desired for therapy: being 'normal'?.... highest level of functioning?.... optimization of potential?

What you believe about autism can fundamentally effect what type of therapy you choose for your child.

This is why I believe that research into the causes of autism is so important: once we have a better sense about the why, shaping the beliefs about autism's meaning becomes a little easier to accomplish. And then, decisions about therapy can be guided by those beliefs. But this is for another discussion, perhaps.

Today I wanted to discuss the difference between therapeutic methods and the mission of the therapy.

Huh?

Okay, bear with me, because I am probably going to fumble along with this post.

Anyone who has been following J-man's story knows the following:

* He has autism and apraxia of speech
* He has been in some kind of therapy since he was 16 months old (ST, OT, ABA, EI)
* We had some serious issues with putting him in ABA and have had both tremendous successes and frustrations since he has been in the program.
* I personally like more relational styles like Floortime or Communicating Partners.
* I believe that autism is a neurological difference in which the communication between the different areas of the brain is altered, and it makes things like language and social communication difficult. I also believe that the capacity of the autistic brain to develop is tremendous but requires different methods and techniques than a neurotypical brain.
* We believe J-man is awesome and his potential is unlimited.

There are other things that I believe it is important to mention:
* I believe all children deserve to learn how to be in this world, and ability or disability should not exempt them from this. Even the hard stuff.
* I believe every child learns differently and is motivated to learn for different reasons.
* Behaviors exist for different reasons, and the decision to increase, decrease, or change a behavior needs to be weighted with the reason the behavior exists and the reasons to change the behavior.
* Communication and connectedness are more important than words.
* We convey messages to our children via our actions moreso than our words.

Recently I have been observing a lot of debates about the benefits and drawbacks to different therapeutic techniques. I'll be honest, most of these debates have been on (in-your)Facebook... *sigh*... but a few have been in Real Life, in relation to the legislative work I have been doing this year. I have found some of these debates particularly interesting, and I have noticed that often the arguments fail to differentiate the methods versus the mission.

So I thought I would take a stab at it.

And I am going to pick on ABA. Why? Cause it is just soooo easy....

ABA, or Applied Behavioral Analysis, is one therapeutic technique that tends to generate a lot of heated discussion. ABA takes a task or behavior, breaks it into its smallest parts and builds upon each part is a systematic way in order to eventually get to the full behavioral step. It focuses solely on observable behavior and each step is tracked through through data collection. It is not concerned with internal processes, merely on what can be externally seen and tracked. Largely that is because it comes from the behaviorist tradition in which the focus is merely on observable behavior and its relationship to the environment. The internal world of thought, cognition, and feelings was of little importance to the behaviorists, and while that extreme position may not be adhered to as strictly today, it has definitely informed the ABA tradition.

As a result of its focus on specific observable (and trackable) behaviors and its strict adherence to external environmental factors in shaping behavior (reinforcers, punishers, etc), ABA has a wealth of data that shows it is highly effective at changing behavior. Period. As a method, it works. If you want a behavior changed, you can get behavior change with ABA. If you want to teach a task, or shape attention, or increase or decrease a certain behavior, ABA works. It works with autistic people. It works with neurotypical people. It works with children, adults, the old and the young. The principles and methods are effective... to me, there is no question about this.

And a child who has difficulty with information processing... who may have difficulty allocating attention and learning things that require the coordination of multiple brain centers at any one time... ABA can help by both providing motivation, positive reinforcement, errorless teaching through careful analysis of the task and situationally setting the task up for success while concurrently increasing the difficulty up to the next level.

So as a method, ABA is pretty awesome at what it does.

But in my (humble) opinion, ABA cannot make you "not autistic". You might be able to get a child to act less autistic, but I promise you... they are still autistic. They still have their brain, and it is a pretty sweet brain as it is. The pathways might become more defined because through repetition and effort the child has learned those skills, but they still process the world the way they do. They may be able to respond to new information faster because they has developed those other pathways and therefore do not have to try and process everything at the same time... memory and skill sets take over.. but they still are autistic.

And this is where the mission of the therapy starts to become really important.

What are you trying to accomplish? What are the goals? And why? What message are you sending to the child? Are you changing their behavior because it does not fit into social expectations, and if so, why? Is it dangerous? Distracting? How important is it to be like everyone else? Is it? What are your desired outcomes?

These are murky questions, people. As I said before, ALL children (autistic, neurotypical, whatever) need to learn about the world, and we (as elders) need to teach them. I think ALL children should be given the opportunity to learn... within their ability.... to communicate, to behave within some basic social rules, to develop academically, emotionally, and socially within their highest potential. Of course, who determines what those things are is what gets murky, but overall I do not think that it is wrong to expect all people to strive for these things.

However, I think we have to be very careful when therapies start to promise to change the child OUT of their autism. The implication is that the autism is wrong, and therefore the child is wrong. And THAT is wrong. Autism isn't wrong.... autism just IS. And I might... as a parent... need to adapt my teaching and interaction style based on that difference.... and ABA might be a helpful tool to do that.... but to assume that the goal is to so fundamentally change the child so that they are "not autistic" is both foolish and insulting.

Recently a friend of mine and I were talking about ABA and her hopes for her child. She wanted her kids "indistinguishable from their peers". I guess I understand that to mean she doesn't see a world where their autism can be any benefit to them, and therefore getting rid of it should be the goal. I told her I don't see that for J-man. To me, ABA serves a purpose in that it helps teach him to be able to do things that he couldn't learn through just natural observation. It breaks things down and provides reinforcement for the tough work of learning. But my mission isn't to make him "not autistic"... my mission is to make him the best J-man he can be, and the world is not built to teach him in a way that is accessible to his learning style. ABA methods help. But I am on constant guard for the curest messages that might get to him.... and it is very hard to communicate that with the therapists who tend to look at atypical behavior as deficits. Which might be why I have always tended to like the relational approaches more... the mission is more about creating relationships with the child where they ARE instead a more adult or "normal" way of being.

So we do ABA because as a tool it is working to help J-man learn. But we stand on constant guard for WHAT they are trying to teach him, and I do foresee a time when ABA as a central therapy for him will be used up, because while the methods might still be effective, our focus for what is important to learn will change.

My advice to those who are out there and trying to figure out what to do: read as much as you can about different techniques. Go with therapies that have empirical evidence (and I mean serious journal publications, not just some study they did and got published in the journal of crap research). Carefully vett the therapists: what are their goals, how do they view disability, what are their beliefs about learning and behavior, and why? Examine your own ideas, and ask yourself: does this honor my child? Does this help him be the best HE can be, or am I trying to fit him into some kind of "ideal" that I want? Am I meeting him where he is or am I trying to force him into being something he is not... and frankly, doesn't need to be?

Highlight It Up Blue 2012

2012-04-07T05:41:00.002-07:00

Just wanted to share the amazing people from our day.

Autism, Acceptance, and April

2012-04-04T11:12:00.000-07:00

April is Autism Awareness and Acceptance Month

For some people it is a month devoted to building awareness. For some it is about teaching acceptance. For others it is about rallying for a 'cure'. For others it is about building support. And for others it is about celebrating autism's challenges and triumphs. It is a mixed bag of responses in a divided community, with some horribly harmful messages (like using the word "hate") and beautifully inspiring messages. It is exhausting and inspiring and frustrating and motivating.

On April 1st, I helped spearhead a fundraiser for a local autism organization that provides supports, information, and activities for the local community. It is an organization affiliated with the program J-man goes with, and they are small potatoes: simple events, seminars, and the like. For example, they are holding an upcoming fundraiser to help a family in the program whose autistic child has cancer. That is what they do. They don't promise a "cure"and aren't looking to change the world. They help small groups of people with simple things. They hold fun events that are sensory friendly and autism accepting. It is local level advocacy that I can really get behind.

The Ladies from Salon Onyx

Highlight It Up Blue for Autism was my brainchild: Get blue hair extensions for the month of April and use your blue hair as an opportunity to talk about autism and what it means for you in your life. To educate people, to generate discussion, and hopefully affect people in some small way. My friend Tera and I organized it online. We got stylists from a local salon (Salon Onyx) to volunteer their time. We made a Facebook page. We networked.

Tera of Tera Photography
These amazing photos are hers!

The turnout was amazing. Considering myself and my friend Tera organized it via email and Facebook, we were both stunned at the number of people who showed up to get silly blue hair extensions, make a donation, and meet each other.

Over 160 people stood in line: mothers, fathers, brothers, sisters, friends, family, autistics and neurotypicals, professionals, teachers and lay-people. People who want a 'cure'. People who believe in neurodiversity. People who knew very little about autism. People who live with autism every day of their lives. People who do every therapy known to man. People who don't. The rainbow of beliefs about autism was represented in those people who stood together in line this one day, who laughed and giggled about getting a silly little blue hair extensions, who had their photo taken, who shared the experience with their friends and family on Facebook. They all shared one thing, though:

Love

Love

They may love someone with autism. They may BE someone with autism, and they love themselves and their friends and family. They want others to understand it; they want to understand it themselves. Some flounder. Some don't. But they all LOVE.

This month I devote to loving autism. I believe in acceptance, insofar as I believe that my boy has a brilliant brain that experiences the world differently and that is okay. His brain needs to learn about the world differently and that is okay. I believe his path to happiness might be different and that is okay. I believe he is capable and able and disabled and that is okay. That is my message this month. In fact, it is not just okay... it is good.

He is the Amazing J-man.

J-man, I love you.

I don't mean to suck at blogging...

2012-03-28T19:31:00.000-07:00

Really, I don't.

But somehow... and I am still unraveling how... I have hit a giant rut. A snag. A bear trap.

So bear with me. Don't leave. I will be back. I promise.

Vacation Post Due

2012-03-14T19:46:00.002-07:00

I have been an AWFUL blogger.

Part of it is because I have been working full time, doing advocacy work at the Capitol, preparing for the Highlight It Up Blue for Autism fundraiser/awareness event, and taking care of J-man and Big Daddy. But hey... I did skip out on the seminar at J-man's program entitled "Parental Burnout - what you need to know". I am working toward being the poster child for parental burnout... I am not sure I need to go to a seminar on it.

The other reason is that J-man and I flew down to Arizona to visit my parents. It was a long weekend, and there is lots to talk about, and unfortunately... because of the above events this past month... my brain cannot possibly convey the terrible wonderfulness of our trip right now. So that will have to wait. Maybe this weekend I can write something coherent... if I am not in a stress-induced coma.

In the meantime, two photos. One of the oh-so-awesome J-man sporting some serious shades...

... And the next of me, sporting my new blue highlights. I just want you to know that I hate pictures of myself, but I am sharing it here because of YOU. I am just that giving.

I promise much more entertaining blogposts in the near future.

School Daze

2012-03-01T18:27:00.000-08:00

And so it begins...

My yin and yang. My highs and lows. My dream and nightmare. All this and more has resulted from a single, crazy, amazing event.

J-man got into the "dream" charter school. For Kindergarten. This fall. THIS FALL!

*sob*

Those are tears of joy and dread, people. Of hope and doubt. Of confidence and fear.

I am so excited, confused, conflicted, excited... oh wait, I said that already... well, there you go. I am a whirl of mixed up emotions.

Of course, my first mistake (or act of utter genius) is that I applied to have J-man enrolled at the "dream" school to begin with. You see, we didn't plan on enrolling him in Kindergarten this year. The plan was to keep him out until he was six. Give him time to mature, etc etc. And I still think that is a really, really good plan. A reallllllllly good plan.

But.... well... for some crazy reason I thought that it couldn't hurt to apply to go to the "dream" school. I knew the odds were stacked against us. There were only a very small number of empty slots (like, 20), and well over 100 applications. So, you know... the odds of J-man getting in were very small and....

Here we are.

Will he be ready? Welcomed? Able to perform in a regular classroom? How much support will he need? Can they provide it? Is this school truly as wonderful as everyone says?

Am I making a giant-ass mistake by even trying this????

And yet, as I waiver to and fro, I see things like this bus...

J-man cut out the bus, windows, and tires independently. And glued them on independently. And those were things he couldn't do a month ago. So maybe I am worrying needlessly? Maybe he can do it??

Stay tuned. The drama is just beginning.

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.