When the Milestones Don't Apply

In the beginning, when you learn your child has a delay, then a disability, you spend a lot of time worrying about the "will he evers".  Will he ever talk? Ride a bike?  Read a book?  Have a girlfriend?  Be able to go to the store without a meltdown?  The list goes on and on and on....

When the milestones don't apply to you, you feel adrift. No moorings to give a sense of where you are and where you are going.  It can be a frightening, disconcerting place to be.  It doesn't surprise me at all that when the messages you get are so vague and unclear, the trajectory uncertain, and the future presented so blatantly negative, so many people cry out for a "cure" and chase every miracle drug or therapy out there.

But what if we tossed those milestones out?  What if we accepted that some brains are going down a fundamentally different path, and their development cannot be tracked on growth charts?  What if we were, as parents, able to accept this different, unknown world for what it is, and accept the child for who they are?  And what if... through that acceptance... the child was able to become who they are meant to be?  The very best version of themselves.  And what if our definition of 'success' changed as well?  And our definition of what is a good life?  Is it possible that doing that could lead us to where we need to be, instead of just where we want to be?

I have been working hard at accepting Jman's development for what it is.  I try very hard to push when he is ready for it, and not push when he isn't.  I try to be sensitive to what his needs are and what his next step is.  It can be agonizing, because sometimes those steps seem insurmountable.

And then it happens.  Giant, huge, amazing things tumble out of him like floodgates opening up.  He goes from disorganized mess to got-it-going-on boy.  He does what I didn't know he could do, and does it with style.

Step-by-step, he teaches me to chill out.

He walked right in and sat in the dentist's chair.

She cleaned his teeth!
Hell, she TOUCHED his teeth!

"Don't worry, Mom.  I got this"

I will never, ever, ever, not believe again.

Thankfulness Fail

I made it five days on the blogging Thankful train.  Blogging FAIL.  

But in my defense, I have posted thankful posts on Facebook every day.  So that has to count for something.  

AMOT Day 5: I am an American

I Heart Bacon

Are you exhausted with the entire campaign season?

Yeah, me too.

It can be exhausting to go through the campaign gauntlet, assaulted with ads on TV, radio, Internet, your mail, driving through the neighborhood, and so on.  Signs, commercials, glad-handers, bumper stickers.  I feel like we... as a community... are so fractured during these times.  And it is tremendously difficult for me to drive by that house on the corner, which has covered their lawn with campaign signs and political statements that I wholeheartedly disagree with and not think "Damn, they must be a**holes".

I'm working on it.

But one thing that I am tremendously thankful for is that we do live in the United States.  Every four years we get a say on who leads us into the future.  We get a choice, and that choice is a precious thing in this wide world of ours.  It might not feel that way.  After all, what is my vote in the sea of all votes, in that mystery that is the electoral college?  A pebble in the ocean, perhaps.  But there are people in this world who do not even have the pebble.  There are women in this world who do not have any choices for their lives, any voice whatsoever.  It can be so easy to forget that, get absorbed in what we don't have and forget to really cherish what we do.

It's more than taxes.  It's more than domestic policy or foreign policy.  It is more than religion and religious differences.  Voting is about ownership of our home and of fellowship with each other as citizens.  We are a family after all, and when it comes down to it, we can bicker like siblings but we have to come together in the end and go forward for the greater good.  And when you make your choices at the polls tomorrow, I hope you keep in mind the fact that all citizens of this country are your brothers and sisters and you are making decisions not just for you, but for them.

I am Thankful to be an American.

Go Vote.

AMOT (Day 2-4)

I meant to write about Thankfulness and Appreciation all month.  But Blogger broke, and I couldn't post like I wanted the last few days.  So here is a rundown of my intended posts, in abbreviated fashion:

Day 2:  I am thankful for Noosa yogurt.  Yes, yogurt.  Dan and I went on a low-carb diet and my one daily "sin" is Noosa yogurt.  It is heaven on a spoon.  Seriously, I would eat this stuff over cookies and ice cream every day.  And I do.  Simple pleasures, but Lord knows I need those!  And in case you are wondering, the low-carb diet thing totally works... especially for my husband.  Might work better for me without the Noosa, but I refuse.  I will go down with the Noosa clutched in my hand, baby!

Day 3:  I am thankful for our super fantastic babysitters.  They are a pair of sisters from down the street who have a brother on the spectrum, totally get Jman, and he loves them.  They made it possible for Big Daddy and I to have a date night.

Day 4:  I am truly thankful for the new friends we have made via the connections of autism.  We had a night with friends who have two awesome boys on the spectrum.  We watched football, watched the kids play-ish, and chatted chatted chatted.  It has been a very long time since we have done anything like that, and it was pretty awesome.  You know, we have lost a few friends (or potential friends) along this autism way, but the ones we have gained far outweigh the ones we have lost.

And that is it in a nutshell...  three days of thankfulness rolled into one post.

A Month of Thanks (AMOT): Day 1

I have been notably absent.   I have a thousand excuses and none.  But I am vowing to make up for it this month.  This month, I will devote to expressing my thanks right here. Reflection can be very good for the soul.

Today I want to express my thankfulness to my wonderful Facebook posse.  And here is why...

About three weeks ago, Jman suddenly and inexplicably decided that he wanted to watch Elmo Happy Holidays.  Don't ask me where this came from, or why, or how....  just accept the reality that in early October we were watching Elmo Happy Holidays over and over and over again.

Not that you are overly interested in the finer plot points of Elmo Happy Holidays, but it is important at this juncture of the story that you know that Kelly Ripa plays 'Mail Carrier Kelly" and delivers many a holiday card to Elmo through the course of the video.  Jman discovered the wonders of... the mail.

So I tossed out this:
_________________________________________________________________

Pia Prenevost

October 17 near Minneapolis

Do you want to make a little boy very happy? Send him a card in the mail.
Jman has just gotten the idea of mail and getting cards in the mail (thanks Elmo). So if you wanna make him a happy boy, send him a card. That is all

Like · 

________________________________________________________________

I was flooded with responses from FB friends.   We are up to seven cards from four states from random friends from Facebook, some "real life" friends and some of the online variety.  When the first card arrived, this was his reaction:

To be specific, his response was, "Oh WOW.... Happy Kwanzaa!!!"

(Elmo encourages multiculturalism.  I'm good with that.  And this is an excellent example of echolalic scripting in practical action.)

With every card he has gotten, he has been more excited.  He loves it.  I have used it to teach him his first and last name, his address, and about writing cards and letters himself.  This is one of his first attempts:

How about THAT?

In a world in which there is so much anger and resentment and blame... where the social and political climate is so fractured and contentious (and Facebook definitely can highlight the hell out of that)... it is really wonderful when people can still do these simple little things to show friendship and caring with each other.  It means the world to Jman and the world to me.

Thank you.

When Words Fail Me

Unrelated photo:  J-man's Art.
  I actually think it is really good

For the last two weeks I have been staring at Facebook.  Specifically, I have been staring at J-man's kindergarten group page.  This page has been designed to communicate with the other parents who have children in J-man's class.  People pass on information, ask questions, you know...  an all around get-to-know-you page.  It is not overly active, but there are quite a few parents who have joined, so it reaches a large number of his classmates' parents.

And I have been staring at it, fingers inching.

You see, I want to tell them about J-man.  I want to tell them how awesome he is.  I want to tell them about his challenges.  I want to enlist their support.  I want them to teach their children about differences, about kindness, about understanding, about friendship.  I want them to know how loved he is and how worthy he is and how he is really worth it.

And I can't write a thing.

I am afraid of screwing it up.  I am afraid of scaring people away.  I am afraid of rejection.

It seems like if I could just form the perfect words, the words that would move them to take an interest in him, then maybe I could grow a caring community for him.  Maybe he would have friends, in spite of his obvious challenges with having friends.  Maybe their children's frustrations with J-man (which are sure to come someday) might be tempered with understanding.  Maybe, just maybe...  this big, bad scary AUTISM word would not be so big, so bad, and so scary to them.  Maybe it would pave the road to acceptance.

I love words.  It is ironic, since words are such a struggle for J-man, that I love words so much.  I love to take words and paint vivid images.  Wordsmithing.  I don't know that I am terribly gifted at it... I do believe I am at least moderately amusing... but I love it and love that I can do it.  But now, words fail me.

Since when does someone get writer's block over a letter to kindergarten parents???

Best Laid Plans and Other Myths

J-man had his first week of kindergarten last week.

I pretty much banked on the fact that I wouldn't cry.  I mean, come on...  after all the drop offs we've have, how could I possibly cry over him going into a kindergarten classroom.  After all, I am not an overly sentimental person.

When we arrived and clustered with all the other kids and parents, I was cool.  It was good.  And it stayed good until...

Until...

... the teacher came and lined them up and started toward the classroom.  And there was no para from J-man.  None.  He was suppose to just line up and go with the class.  He looked terrified and confused, and I imagine so did I.  Big Daddy just looked pissed.

Where was the para?  You know, the one we all agreed would be with J-man during the day to help with transitions and provide him supports as he learned about this crazy, scary place called school.  The one he needed because of his extreme language issues and difficulty understanding.  The one we specifically all agreed to in the meeting a short five days before?

We walked him to the classroom ourselves.  There really was no other choice, as there was no way he would have gone on his own.  We stopped at the door and his kindergarten teacher, Ms L, was there.  She saw the look of confusion on our faces.  Or maybe frustration with confusion and a tint of ticked-off.  Anyway, she greeted J-man and took him by the hand to lead him into the classroom.  He turned back, a bit frantic, and told us to "wait", using both his voice and signs (which usually means he means it!).  Once safely in the room, we hit the front office to ask what-the-heck was up with the no-para situation.  We were told that the para would come to work with him in an hour.

That meant the for the first hour of his day, he was on his own.

Yeah.  You can imagine how well THAT went over with us.

(Let's just say that the next day, he had a para from the first minute he arrived!!!)

So I cried.  We went to lunch, and I cried, worried and was frightened for him.  I was so terribly frustrated, too.  After all that planning, all the meetings, all the conversations and double checking and hovering, it still wasn't enough.  The first hour!!! How could they have screwed up on the FIRST HOUR OF SCHOOL EVER?  How do I even wrap my head around that?!

Of course, he survived!!!  All is well now.  He seems to like kindergarten, or at least is not protesting going, which is a very good sign.  And apparently he is impressing them with his abilities already.  I really like the teacher, the para, and the SPED teacher.  They all seem eager to work with him, which is good.  So forward we go, one day at a time.  What I need to remember is that even if I think I have everything worked out and all is right with the world, it is probably not.  Constant vigilance is needed.  Which really sorta sucks.

The Last Weekend

This was our last weekend before Kindergarten.  We had a mommy & J-man weekend and went to the zoo to see dinosaurs (don't ask).

Tomorrow J-man becomes a Kindergartener.  He crosses that invisible line that moves him from young childhood into school hood, and a door to a time closes.

It is unlikely I will cry.  I am not really a crier.  Or at least, I am not a crier with these kind of "transition events".  After all, I have been dropping him off at some therapy or another for years now.  Afternoon Kindergarten for three hours is nothing in comparison to sending him for 40 hours a week of ABA.  So no, I don't think I will cry.

But I am sad.

Oh, I am anxious, excited, freaked-out, hopeful, and scared too.  All of those feelings are for J-man.

I am sad for me.

I am not ready for this stage of my parenthood to be over.  To not have J-man be my little boy.  To have a school-ager: not a baby or a toddler or a preschooler.  J-man being my one and only, I am sad.  So much of my parenthood thus far has been far-and-away from my expectations... well, of course it has... and while I have wrestled with that, I have also reached an uneasy peace with it.  It is...and has been.. what it is, with some bitter and a lot of sweet.  I will not regret a moment.

And I am not ready to leave this part behind.  This passage makes me sad.  I will never be this mother again...  I will be his school-age mother, and it will be great and good.... but I will never be a mother of a little boy again.

This was the last weekend for that.  Some bitter and some sweet.

don't speak too loudly, but...

pssst....

hey you...  shhhh....

i only dare whisper lest i jinx things....

but i wanted to tell you about our amazing iep experience.

it was good.  it was great.  it has set the stage for good things.
my doubts about the school and their commitment to jman have been soothed.

it SHOCKED me.  okay okay, shhhhhhh..... can't speak too loudly.

the team was amazing.  the team wants to do right by jman.
the kindergarten teacher has a plan.
a real plan.
a well thought out plan.
jman got a para.  a full time para.
jman has a speech therapist;  one who is willing and eager to talk to his private speech therapist.
jman has visual schedules.
jman has a calm room.
jman has a token system and visual supports.
jman has a sensory plan.

jman starts kindergarten on monday.  MONDAY.

i know, i know.

monday is coming... three days and counting... and we launch.
and with all the good and the great, mommy is still scared.
terrified.
freaked out.
and hopeful.

VERY HOPEFUL.

Tokens

Can J-man ride a bus?

It started out with that simple question.  Is J-man capable of riding a bus... a regular bus... without supports?  With a para?  Or does he need access to special education busing?

I was preparing for J-man's IEP meeting.  J-man gets TWO of those... one for his home district and one for his charter school.  The IEP from the home district can act as his charter IEP, but there are two meetings.  Two opportunities to get it right.  Or wrong.  Two opportunities to give me an ulcer.  One thing about IEPs... especially initial IEPs... is that they set the stage for the year.  It is important to get it right.

Big Daddy and I have agreed that J-man will not be taking a bus this year.  We are helicopter parents, after all, and the idea of putting him on a bus is a little like telling him to go rent his own apartment and get a job.  Not gonna happen.

But when it comes to the IEP, getting busing secured it pretty important.  It is an expense that districts don't relish, and yet all children are guaranteed transportation to school by law.  So if a child cannot be safe or tolerate regular busing, special education busing is the accommodation needed.  If you don't address it from the get go, and then later you need it, it becomes harder to justify.  

I was uncertain if we could require special education busing with a charter school (we can).  And we aren't planning to use it anyway.  But for some reason I just know it is important to fight for it. To have it there when we are ready for it.  I spoke to a couple of advocates at a local agency and the message they gave me was clear:  it is very important to emphasize worst-case-scenarios for J-man.  Emphasize how disabled he is.  Make sure you  don't give them any reason to deny him a service.  No hope.

It made me sick to my stomach.

How do I talk about my Amazing J-man that way???  How do I present him as being completely unable to manage a bus, or a classroom, or a playground, without supports?  Because to be honest, I don't know.  To be honest, some days he might be very capable?  Sometimes it works, sometimes it doesn't.  We are proactive people:  hope for the best, plan for the worst.  Not expect the worst, but know it could happen and try and have a game plan for it.  And a lot of the time we get the best.  Or at least the good.  But we don't invite trouble either... we pick our battles and select where we will challenge him and allow when we need to back off.  We are child led so we listen to him.

I was depressed.

And then, a ray of light!!  Or at least, good sense!!  A posted my woes on my Facebook page and asked my ASD posse to help me out.  Karla, an autistic adult and brilliant owner of Karla's ASD Page provided me with some of the best insight I have seen.  Here it is...

Let's say you have two children: Jimmy who is neurotypical, Bobby who has autism.

Each child gets 10 tokens for their day.

For Jimmy to ride the bus, it takes 1 token.  So for the rest of his day, he has 9 tokens.  Nine tokens to learn to read (maybe 2 go there), to sit still in circle time (1 token), to eat lunch with his friends (3), to play and be social  (another 1)... and so on...

For Bobby to ride the bus, it takes 5 tokens.  So for the rest of his day, he only has 5 tokens left.  Can he ride the bus?  Yes.  But what does it COST Bobby to do that?  What won't he be able to do because he used so many 'tokens' keeping it together to ride the bus?  And is riding the bus a priority for those tokens?

Obviously, the answer is no.

To me, her answer means that we pick the important things to get the tokens, and the less important things we ease the cost of.  Support, alter, or omit those things that cost too much and don't provide a real benefit.  Seems to make a lot of sense to me.

I presented this analogy to the home district IEP team (and gave Karla full credit!!) and .... honestly... I think jaws dropped.  The SLP wrote it DOWN in her notes, she liked it so much.  I could see that this perspective was greatly appreciated and was a perspective that they had never heard before.

And he got busing.

Not that we are gonna use it.

Hello Anxiety...

...It's been awhile.  For a time, I pushed you back and out of the way.  Oh you'd pop in now and then and add your two cents,  like that nosey co-worker who just has to give you their unwanted opinion.  It happens.  But for awhile, it seemed like you were relegated to the back seat.  You didn't show up much, and you didn't stay long.  An unfortunate, but manageable, houseguest.

And now it appears you have brought two large suitcases and forwarded your mail to me.  You've moved in.  Awesome.

I worry.  A lot.

I worry if we made the right decision to change therapy centers. (I think we did)
I worry if we are going to be able to make this new schedule work for real. (I have my doubts)
I worry and worry about putting J-man into kindergarten this fall. That he will fail.  Or we (the adults) will fail him.

Our experience with the school thus far has not provided me with loads of confidence about this decision.  We met with school officials about a month ago to discuss his entry.  In essence, the special-ed director basically said... without actually saying it (cause that is illegal)... that she felt that he didn't belong there.  That his needs were too great and he would be better served elsewhere.  Of course, she met him once, for about an hour, and he behaved rather well I thought.  So I must say I am not sure where she is getting her information.  Or opinion.  And I am suspicious of the roots of the opinion:  are their concerns truly about J-man, or is there some other issue going on?

And do I want to put him in a school that doesn't want him?  Whether it be because they aren't up for the challenge or they don't want the hassle?  Regardless of their motives, the fact that this is the attitude has me in something of a spin.

I doubt everything.

And this is just fricken kindergarden!!

I envy other mothers who don't have these worries.  I envy parents who can just get the regular old jitters about starting school.  I would love to have those worries, because with those jitters comes some excitement I think.  And right now, I have no excitement about this.

Only dread.

But then, what is the other option?  I feel like there is no school home for him... not really.  Even if we wait a year... then what?  Same spot, different day.

Oh, Anxiety, go away.  You drank all the milk and used the last of the toilet paper without changing the roll.  You hog the TV and watch the Jersey Shore while picking your toenails.  You are not welcome anymore.  Get your nasty feet off my couch and go.

Desperately Seeking School...

... that embraces a full inclusion model for all students, special needs or otherwise.  By full inclusion I DO NOT mean that all kids are just in the same classroom and no longer segregated from each other. Inclusion isn't about geography. I mean an inclusion model in which every child is considered part of the community and the classroom.  Each child is actively taught the value of diversity and differences.  Each child is rewarded for inclusive behavior, and there is no tolerance of bullying by either the staff nor the other students.  I seek a school where each staff member, from the principal to the lunch lady, recognizes the value and eagerly seeks the opportunity to embrace special needs children, children of color, of different ethnic groups, and every child who enters their doors regardless of needs or abilities.  I seek a school where every student is expected to not only perform at an adequate level, but at their own optimal level.  I seek a school where the teachers might look at my ASD child and say "how might I help get him to Harvard?" instead of setting the bar so fricken low because of a label.  I seek a school where the staff are not afraid of my child and his needs, but rather are trained... or will seek knowledge about... his disability and how best to teach him.  I seek a school which doesn't view him as a liability or an expense that has to be avoided.  I seek a school in which he is viewed as having as much right as all the children to get a quality education, and there are people surrounding him to want that for him as much as I do.  I seek a school that is willing to love him as he is and help him become the best he can be.

If you are that school, please get in touch with me ASAP.  (Oh, and say hi to Santa Claus, the Easter Bunny, and the Tooth Fairy.  I assume you are in Fantasyland.)

Father's Day, Ninja Style

We had Father's Day a day early.  Big Daddy has his black belt in karate and teaches locally.  He volunteered to help out at a local tournament and J-man and I went to watch for a bit.  I have never taken him to any of Daddy's karate events before, so I figured he would probably love it.  Or get overwhelmed.  Or both.

It was LOVE.

Getting all geared up in
Big Daddy's Darth Vader gear

This is JOY

We got in and immediately J-man was entranced.  The students were sparring, and he laughed and cheered and said "MY TURN" several times.  It kinda broke my heart to tell him he wouldn't be entering the ring!

J-man calmly waits his turn

Big Daddy came to the rescue, and J-man got a little one-on-one time training with him.

J-man and Big Daddy

And then the absolutely coolest thing... the thing that saved the day... happened!  Some of the students started to "spar" with J-man.  OH, he loved it.  Me too...  I couldn't stop laughing.  What a wonderful group of young people!





Happy Father's Day to the Best Daddy in the World

Moving On

We have decided to leave J-man's current program and start up at a new center.  This new place has a lot to offer in terms of being more in line with my kind of thinking when it comes to interventions for J-man.  They will still do some ABA, but they use a mixed model approach and so will taylor the programming for him.  It is awesome.  But... it is new.

Brand New.  As in J-man will be one of the first clients.  Yikes, talk about taking a leap into the unknown!

The program is very close to our home, which is a huge bonus.  Hopefully less 1 hour home commutes to/from therapy, and more time to be with J-man and Big Daddy.  They also want a lot of parent involvement, which is right up my alley.  Mommy likey!

It was bittersweet to give our notice to his current program today.  He has made such huge gains over this last year that I will admit to a certain amount of fear about this change.  I know they don't feel like he is ready for kindergarten...  that much is clear... and I don't know.  Maybe they are right.  But here is the thing...

J-man always rises to the occasion.  So can we deny him a chance to show us what he can do?  Because of our fear?

No.

Instead, we are moving forward.  He will attend his new program in the mornings and attend J&J preschool in the afternoon (his old preschool... they are amazing!!).  We will see how he does there, with the chaos of a room full of preschoolers.  And if he does okay, then onward to kindergarten.  If he struggles, Plan B.

But I am hopeful....

.... because today he rode a bike for the first time....

...  and danced with me to Elmo's World, twirling me around and telling me to 'dip' him.  And made faces with me in the mirror, first a mad face, then a happy face, then a surprised face.  And told me a story about a TV show he watches.  All I could make out of it was "the rust bucket is a motor home" .... which it is (Ben 10, people)... but he went on and although I couldn't understand him, I knew he was telling me a story.

I think he deserves a chance.

Little Losses

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

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

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

Just wanted to share the amazing people from our day.

Autism, Acceptance, and April

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

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...

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

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

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

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

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!!!