Playing Hookie from IEP Season



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This year, I am missing IEP Season. 

Actually, I am not exactly missing it.  IEP Season, that is.  I am not missing it AT ALL.

It is like I am suppose to be at an all-day staff meeting with a boss who can either be sweet as pie or a complete prick.  Who cuts my budget.  Wants me to work Saturdays.  And moves my desk into the basement.  And takes my red stapler.

And instead, I took a mental health day.  I called in and am frolicking at the beach.  Or going shopping.  Or doing yard work.  Or having painful dental work.  You know, something better than the anticipatory soul crushing anxiety and emasculating experience of IEP meetings. 

Not that I am bitter or anything.

I know my reprieve is probably short-lived. Unless I homeschool, I am pretty much doomed to have to enter the IEP arena again.  I will have to go back on my meds, endure the stress-induced ulcers and migraine headaches, and pray pray pray that no one breaks my baby boy. 

But until that day comes, I am going to bask in the sun with my son.  Make the decisions that are right for our family... our son... without condescending "we know better than you" attitudes.  Enjoy the company of professionals whose first priority is the J-man... as it should be. 

Bliss!

A Story in Three Parts

Part one, as relayed to me by my husband

Today, my hubby picked J-man up at preschool.  As is often their habit, he swung into the drive-thru to grab dinner on the way home.  When they left the drive-thru, J-man called from the backseat,

'ar-get??"  J-man said, reaching forward. He said it again, reaching toward my husband with serious intent.  My hubby, always a softy for the J-man's desires, turned the car around and drove to the Target down the road. 

When they arrived, my husband went around to get J-man out of his carseat.  Upon doing so, J-man lunged toward the front seat, repeating over and over "ug-get, ug-get".

J-man did not want to go to Target.

J-man wanted a chicken nugget.

Part two: The OT evaluation

Yesterday we took J-man for an OT evaluation.  We have taken an "OT break" over the past year, and recently decided to start it up again.  We found a place that had similar philosophies as us, and we were visiting for the first time.

When we arrived, the director gave us a tour. The clinic is.. in a word... awesome.  I wished I was a kid again.  There are multiple gym rooms with swings, mats, toys of every kind.  There is a blacklight room, with stars on the ceiling and big floppy cushions.  They have a POOL for aquatic therapy.  It was a child's dream playland come true. J-man was nearly giddy with excitement.

And that tour, my friends, was a singular mistake.  Because once you have been in the candy store, you just don't want broccoli.

The evaluation took place in one of the many gym-like treatment rooms.  There were plenty of toys, all well out of reach, to just tease the J-man.  And clearly, doing the standardized testing they wanted to do was soooooo not what J-man wanted to do.  The temper tantrum was fairly fierce. 

Abandoning any hopes of formal testing, the evaluator tried to get J-man to play with some of the equipment.  But by this time, he had reached Defcon 4 of Crabby.  Eventually, he requested a ball, and they went into the next room to get one.  When they got back, J-man was still unsatisfied.  He came up to me and said over and over "be-ball, be-ball".  He signed ball, over and over.  We showed him the balls that had been brought in, but he still looked at me with these pleading eyes... "be-ball, be-ball".

The visit was something of a total disaster.

As I lay in bed that evening and went over the events of the day, I suddenly had a flash of insight.  I recalled that on one toy shelf, toward the top, there was a toy basketball hoop.

Be-Ball.  Basketball.  He wanted the basketball hoop to go with the ball.

Part three:  The Transition

J-man transitioned from the young preschool room to the older preschool room this week.

It was a day I had been secretly... or not so secretly... dreading.  I feared.  What if J-man couldn't handle the transition?  What if he couldn't leave his beloved teachers?  What if the couldn't keep up with the demands of the other room?  So much doubt has been spoon-fed to us recently (and you know who you are), that I was on pins and needles. 

J-man rocked it. 

From all reports, he was in bliss to be in the new room.  Everyone... and I mean EVERYONE... was shocked at how well he did.  I received an email today from the Director of the center with this simple message in the subject line:  J-man is having a GREAT day in the FISH room... with this picture attached:

When I picked him up on the first day of the transition, I had an opportunity to talk to his new teacher, Miss H.  She was glowing.  She told me that when J-man came over, the other children were full of questions.  She introduced him to the class and reminded them that they had all been classmates before, and that he was moving into their room now.  She told me that several of the children said "Oh YEAH, I remember J-man.  He is my friend", and there were several volunteers to be J-man's "buddy for the day" to help him learn about the classroom and the toys.  It seems that the children welcomed him with open arms.

To them, he isn't disabled.  He isn't "defective" or "wrong" or "delayed".  He isn't one big, fat negative... a never-will... a can't do.  He isn't "other".  How the adults in his life fail him, time and time again, and yet these children just open their arms and accept. Today, he is their friend.

To them, he is just J-man.  Perfect as he is. 

******************************

I am not sure what I am trying to say with these stories.  I have been thinking a lot lately about our issues with the school district, of the choices we are making and the decisions that others have made.  I have been trying to read the tea-leaves of the future, to try and anticipate what our next, best move is.  As he now moves into his new room, I still fear.   I still wish that he could have more support, so that when he tries so desperately to communicate, someone would be there to hear.  To understand.  To be his bridge. 

But maybe I, too, underestimate him.

Maybe he will just be his own bridge.

When God Whispers

On Friday, we fired our school district.

And it feels like I have shed the weight of the world.

Like I can breathe again, deep and easy.

Like I am free.

Until we cut them loose, I didn't realize how heavy and trapped I felt.  Like I was slowly drowning.  My hubby said our relationship with the ECSE department was like a relationship with an abusive spouse that you just keep going back to, hoping they will change.  That things will get better.  Or that you have somehow convinced yourself that you can't live without them.  But you can...

He was right.

(Relish that confession, babe, it doesn't happen often ;)

As some of you are already aware, we have had some issues with the school district services.  While I mentioned it on one or two occasions, lately I remained relatively vague about the issues. In part this was because we were in the thick of it and I wasn't sure of the outcome. However, through the magic of server-IP-identification, I also became aware some time ago that someone(s) at the school district have been regularly checking out my blog.  I will confess...  I am kind of amused.  Heck, the Internet is an open forum and I do put it out there.  And actually I have no problem with them reading my blog:  I am proud of my boy and all he is doing! But I was... hesitant... to go into specifics about my anger, frustration and angst regarding our conflict.  Not that I don't stand behind my blog...  what I say here I proudly own... but you know, they don't need to know everything.

Of course, now that they are fired...

I will admit I've had some fantasies about writing this post.  My hubby has been dying for me to tear the district apart, to name names and put it all out there.  But now that it is here...  what do I say?  That they acted poorly, were manipulative and lied?  Of course.  That they have made inappropriate and possibly destructive decisions?  Yep.  That they have failed to listen to us or treat us as equal partners?  Yep  That they have failed in their legal, ethical, and moral obligations to the J-man?  It goes without saying. 

We wouldn't have fired them for anything less.

But aside from telling the basic story in my letter, I have no taste for giving them much more of my time.  Instead, I would rather focus on why it took me so damn long to see what has been obvious all along...

We don't need them.

In case you are reading this, IEP "team", allow me to repeat:

We don't need YOU.

We will do this all on our own.  In many ways, we have been. You had a chance to be a part of something magical, something beautiful, something you could have been proud of.  Something meaningful. If you would have just opened your eyes and really saw him...

You lose.

The system is stacked against families.  The power structure leans heavily in the favor of the school district.  Don't get me wrong. The law is built for us.  But failing to follow the law carries few penalties and doing what is right for the child and the family is not necessarily rewarded.  The ethics seem nebulous at best, and it appears to be fairly easy to convince themselves that they have the knowledge and authority to be the ones making the decisions.  It is okay to keep parents in the dark about their options, because if parents know too much then they might challenge you.  As a parent, this attitude can feel very paternalistic:  Do what we say because we know best.  It is our system, our programs, and if you don't fit or agree.... well, too bad, so sad.  So much for the Individual part of IEP.

So we started with Hope.  Hope we get 'the good ones'.  Hope they will really see our child and work with us.  We smile and try and cross our fingers and pray that they share our vision.  And even as the evidence mounts that is not the case... we still Hoped.  Maybe they will see him as we see him.  Maybe they will.... 

And as Hope starts to fade... it is replaced by Anger.  Anger that they are failing in their duty.  Anger that they won't listen or maybe just don't care.  Anger.  We pay taxes.. have since we were 16 and probably will until we die. We have one child... only one.. and I think we have paid our dues.  J-man is a citizen of the United States of America and our society has decided that ALL children deserve a quality education. They are not allowed to fail. This is J-man's right.  They should feel ashamed, right to the core. 

And under all that Hope and Anger is Fear.  Fear about making the wrong decision.  Fear about defying 'authority'.  Fear about doing it all by ourselves... what an isolating, lonely feeling... How will we do what needs to happen for J-man?  Why can't they just love him as we do?  There is so much to love...

I was stuck by Hope, Anger, and Fear.

And amongst the chaos of this week... the lost Hope, the Anger, the Fear...  I read this post by my friend Ange at Life in the Pumpkin Shell.  The last line struck a chord in me so strong and clear it was like God himself whispering in my ear:

One gift allowed me by the spirits who guide me through...'Walk away when it feels wrong.'

And then, in a wonderful repost-response given to me by Ange about their experiences with their son  (who reminds us of J-man so clearly it is scary), I found solace and fellowship.  And Courage...

So while Hope, Anger, and Fear have failed me,
the Courage to walk away will save us all.

And it feels like we have shed the weight of the world.

Like we can breathe again, deep and easy.

It feels like we are free.

.

I Need More Mercy

Well, I still really can't talk about IT.  I will, someday. 

But we did have a Big Meeting.  A five hour Big Meeting. In all fairness, there was a lunch and pee break in there, so it was probably only four hours.  And some things were ironed out, discussed, and hopefully put on the good path of righteousness and virtue.  Clearly, communication on both ends has been less than ideal (Us included.  Hey, I own my sh*t).  Cautiously optimistic and hopeful am I.  The ultimate decision, however, was.... and hold on to your hats.....drum roll please....  we need to have another meeting! 

*sigh*

It's okay, in a way.  It needs to happen.  But given the ulcer-inducing level of stress this has been over the last few weeks, I am sure this will take 10 years off my life.  Seriously, while one can live on four hours of sleep at night (damn insomnia) and it is great to lose 7 pounds in a two week period (related to stress-induced nausea), I am not sure my creaky, aging body can handle much more. 

I used to be cute.  I guess J-man is going to have to be cute for the both of us. 

The only thing that kept me remotely sane (aside from J-man, my hubby, and the great lot of you who have emailed, called, or personally given me support... you rock my world, people!) was my re-reading of the Mercy Thompson series.  I just can't help it, that vampire fighting, coyote-shapeshifting girl mechanic with her werewolf-love-triangle just hits me right here. It is this awful guilty pleasure... like confessing you like Barry Manilow or that you eat cold SpaghettiOs out of the can.  I do read literature. I do.  But there is nothing like the cavity-inducing brain candy of the Mercy books to make me forget my troubles and get lost in the trials of having hot werewolf men chase after you (in a good way) while battling vampire demons or fairy queens or whatnot. 

I re-read all five books.

And now they are all done, and I need more Mercy. 

So dear Ms Briggs, if you are reading this, please hurry.  My sanity depends upon you.

Funk-a-licious

J-man is in a funk, too.

(Warning:  Philosophical rant ahead.  Proceed with caution. And wine... lots of wine.)

This situation with the school district has me quite in a funk.

F-U-N-K

It isn't entirely about the conflict, although certainly that is the nexus, the center round which the funk rotates.  It is hitting me quite hard, this idea that we are on our own on this.  I guess I had this illusion that everyone in a helping profession actually wants to.... err... help?  And maybe they think they are, in some twisted "we know better than you and your opinion is irrelevant" kind of way.  I can't even wrap my head around their reasoning, it is so foreign to me. 

And to be honest, their reasoning doesn't even jive with their policy and their own initiatives.  Clearly, based on website and literature from our district, preschool inclusion is suppose to be a "focus"...an ideal they are pursuing, striving for.  Indeed, while googling 'preschool inclusion' I ran across a site devoted to the idea of preschool inclusion.  Ironically, the director of early childhood at my district had even commented on the article (weird irony, I know).  I'll protect her identity, but she said in part (in relation to the difficulty in training, organizing, and supporting preschool inclusion, which they strive to do... italics mine)...

".... However, the comments from our partners (in the community) always tends to be that they need more support, a teacher full time or a para full time. Even the para model has been met with a lukewarm response as our partner programs want licensed teachers. Some of these models are very expensive and we are limited to the number of slots they will open for us (for good reason with their size limitations, too). As much as we do to train and collaborate it still feels like the old "your kids" versus the "community kids". "

Clearly (while I hate to admit it) the director is really frustrated with what she sees as an inability of the community preschool programs (be they private or public) to work with the district in a meaningful way. I get that, for sure.  Change is hard for any system.  Of course, there is a hesitancy to invest the money in providing the support.  A full time teacher or para is pricey (a worthwhile investment in my eyes for many reasons, but pricey nonetheless). And part of the frustration stems from the reluctance on the part of the community preschool staff to be a full partner with special education, I am sure.

Except, of course, our preschool wants to learn.  They really, really do. 

And we, the parents, want to collaborate.  To be part of the solutions.  We really, really do.  We have a successful home program that we would love to tell them about, to get them to try.  We want to tell them about him, and what we see as his real needs.  We want to be involved in the solution to the problems in the classroom, and as we are the experts on the J-man, we should be.

So I am not sure I buy the "your kids" vs "community kids" beef.  When we have a willing preschool, a willing family, and a desire to support J-man in his community setting but the lack of support to really help him progress, the district's answer is to segregate him.  Not to build skills here, provide support and opportunities to expand the practice of these teachers in the community, skills they might just use down the road, with the next 'J-man'.  Nope, just pull him out:  it is quicker, easier, and cheaper. 

There is this disconnect between the ideals espoused and the practice in place.  It is like those people who have their corpus callosum cut, resulting in the hemispheres of the brain being separate and unable to communicate with each other.  Each side operating on a completely different frequency, and neither side recognizing or communicating with the other.  Literally, the right side doesn't know what the left side is doing.

(Note:  I used the words "funk" and "jive".  Can you guess the era I was born in?)

Back to Our Regularly Scheduled Program...

I can't talk about it.  You know, IT.

 I really want to talk about IT.  I really do.  But for now, I cannot say much.  I can say there will be another meeting.  A meeting with more people, the same people and different people. Important People.  And until that meeting, it would be unwise to talk about IT here.  You know, just in case They are reading this.  And They might be...  who knows, maybe They are trying to learn more about Us.  About who we are.  About how far we will go.  And if I talk about IT here, They will know that we will go all the way, as far as we need to, because our son is worth it. 

So, of course, I can't talk about IT.

Instead, I might talk about how we have started re-examining our committment to the public school system.  How this system is appearing to be more and more broken.  How we fear for our son in a system that fails to protect their children, their students, and may fail to do the right thing (yep, that's our district!  Seriously, people, there is NEVER an excuse for this type of hateful behavior; I don't care what your beliefs are.  Teaching compassion anyone??)

But I think I will just close here with two pictures of the J-man, because he is cute and full of promise.

I am coming out of my shell!

Faithful



IEP Alert Level:   HIGH

(Update to post below)

So.  IEP meeting today. 

To discuss getting a few more hours of teacher time.  A little more time.  To give J-man what he needs to be successful.  To .... hmmm..... try harder.

I can't go into details right now.  Needless to say, though, it did not go well.

Here is what I can tell you.  No one believes in J-man but us.  No one is willing to have faith in him, that he can succeed where he is.  One of the school district "team" members even had the nerve to say to me "What... do you want him to fail???"

Excuse me??   EXCUSE ME???

So here is my response to you, "team" member.

Why do you assume that he will fail?  Why, when the question of where he needs service, and what kind of service it is, do you assume he cannot succeed where he is? Why do you have no faith in the ability of a well-crafted plan and a devoted team of people?  If we provide what is appropriate, why do you assume he can't?

This is starting to become a fundamental issue that I am noticing:  The focus on deficit instead of potential.  The focus on everything that is wrong or bad or disordered instead of what is possible, on strengths, and on rising to the occassion.  You know, if you have low enough expectations, you can always meet them.  But we insist on high expectations, and apparently that is a problem.  Oh, and that we are involved, that we have opinions that differ, and expectations for performance.

*************************

Update:  Title Change  

My dear friend JK emailed me after I posted and took exception to my title "Faithless".  She said (in part) the following:  

...I found the title of your writing interesting because in my eyes, it is "faithful". Faithful to the fight and to the life and future of your son. Don't give those who are say ignorant and negative things that much power, credit or even a headline. Shout it from the top of your lungs how much you love and adore your son and how every inch of him is worth any frustration coming your way. I can't imagine your frustration, but you will prevail. You've never given yourself the option not to.....

You are most certainly right, JK.  Title changed, and negativity will never get top billing again!  Thanks, I needed that gut check :)
 

Alert Level: Somewhere Between Guarded and Elevated

In the interest of full disclosure, it wasn't an actual IEP meeting. 

It was suppose to be a meet-n-greet.  An opportunity to talk about J-man, his progress, and some plans to start out the fall.  An opportunity to meet the new special education teacher coming on board, answer her questions, and hopefully get a sense that she was supportive for our overall goals.  I had also indicated to our case manager I had hoped to get a little more teacher time for the J-man, if possible.  Currently, he gets one hour of time a week.  One hour.  That is an "arrival at preschool, get acclimated to the room, work with J-man, wrap up and write a report" hour.

Doesn't seem like a lot of time to get anything really done, does it?

So I thought "well, it can't hurt to ask for a little more time, can it?"

Yes it can.  Oh yes, yes it can.

I could go into a play-by-play description of what happened, but I am not sure it would be helpful.  The meeting was going smoothly, the aforementioned activities talked about.  Updates were given.  And then, the question of the hours was brought up.  And that is where all Hades broke loose, my friends.

The case manager and new teacher basically told me that they recommended J-man go into a self-contained, special-ed only classroom at the district office, and that they didn't think he belonged at J&J preschool.  That an inclusion setting "couldn't give him what he needs" and "he wouldn't make adequate progress there".  In the special ed classroom he would learn to "follow simple routines" and they can work with him "more intensely". 

I was shocked.  It actually took my breath away. 

You see, we had already addressed these issues, not once but twice.  Our ultimate decision in the spring was to stay at J&J this fall.  They are wonderful.  They love him.  They truly want to do the best by him.  They believe in inclusion. We believe in inclusion.  And, most importantly, J-man is doing great there.  He has made progress all summer long.  Without any real district support whatsoever.  He follows classroom routines.  He is cheerful.  He likes his teacher.  No, he loves his teacher. 

Now, let me be clear about who these people are.  The case manager is also the district speech therapist.  She has had less than ten sessions with him, her last at the end of the spring session.  She hasn't seen him in three months.  And I now believe she has never had any faith in him, or in the process.  The new teacher is, well, NEW.  She has seen him... errr... never? 

Don't worry, I set them straight.  GEMM kicked a little butt.  There was absolutely no doubt whatsoever where we stood, and how utterly ridiculous I found the proposal.  The director and J-man's teacher from J&J wholeheartedly supported us.  Our private speech therapist was there as well, and gave glowing reports about the progress he has made over the past three months. (I will no doubt hear her opinion about the meeting itself on Monday).

Frankly, I am insulted.  Yes, insulted is the right word.  And devastated.  Devastated that the people who are suppose to work with him have no faith in him.  Or us. 

What do I do with that?

An Open Letter to All Professionals.

My Heart left my chest
In tiny jeans and t-shirt
Walks around, exposed.

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you.  And we are disappointed in ourselves.  We are your harshest critics.  We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

GEMM Loves IEP Season.

My current mantra

Did I think that we would dodge the craziness that is IEP Season?

Did I think that... somehow... because we had conversations and decisions made in the Spring, that we would dodge the chaos that is Fall Special Ed?

Oh, silly rabbit.... 

About three weeks ago I received a letter letting me know that Jonathan would be attending preschool at our local school.  This was a surprising letter since we had decided to keep him at Jack and Jill for this next year, and receive services there.  I called the school district office and let them know that some kind of error had been made. 

And a Call came today...

Oh, well, their impression was that the case manager felt that J-man needed more service than they can give at his daycare and therefore he was signed up for their program.  We would need to have a meeting to clarify things.  At the start of the school year.  In two weeks.

And what I find most frustrating... most insulting... is that the woman I spoke with doubted what I was telling her.  That I was WRONG.  That I misunderstood the case manager's plans.  That I didn't know what I am talking about. And oh, by the way, that I didn't get to decide...

Green Eyed Monster Momma's time has come again.  Let's get it on!

Red Flags vs Green Flags

Photo Credit to NakedPastor (really?)

It is IEP season in Special Needs Land. Families across the nation with kids with greater than average needs are putting on their big girl and big boy panties, their hip-wader boots, and diving into the swamp. Some are coming out winners, some are coming out losers, but most dread the hunt.

Attention School District People: When you focus on deficits, that is what you will see.

Attention Special Needs Parents: When the school focuses on deficits, that is how they will view your child.

Recently, I read a lovely piece written by Dr Jim McDonald called Red Flags vs Green Flags. He addresses the issue of autistic "red flags" and how they end up guiding professionals to make autism diagnoses when those diagnoses might be premature or inappropriate. What I found most compelling about his article is his urging of looking at what the child can do... green flags.... and how development works and that the addressing of those green flags is so very important. I was struck by this overarching concept: Look at what the child CAN DO. Build from the positive. Support that, and allow it to become a building place to address deficits.

Anyway, I thought it might be worthwhile to share his article with you.

___________________________________________________


Red Flags-Green Flags: Which do you follow?
By Dr Jim McDonald

Parents frequently tell me about the ‘red flags’ that professionals claim to see in their child.

‘Red flags’ are signs of autistic-like or delayed behavior---such as severe language delay, lining up cars, flicking his hands, isolating himself, not talking to others, repeating actions or communications and many more ‘suspicious’ behaviors.

Seldom do people stop and ask: Does the child show as many positive social behaviors as the ‘red flags’ that appear? The diagnosis of autism, PDD or Asperger’s is often based on these ‘red flags’ without accounting for two critical things; ‘green flags ‘ developmentally correct behavior that is not autistic-like, and recent changes showing productive social and communicative behavior. These ‘green flags” and recent changes show that for some children, autistic behavior is a developmental matter more than a long-term disorder. Some professionals seek out negative signs, focus on the obvious differences and ignore positive ones that I call “green flags.” This results in unreliable and invalid assessment and treatment.

A green flag is a behavior that shows the child is developing in skills that show he is not autistic or delayed all the time. It also suggests that he is even developing out of autistic habits. Common green flags include playing with others, initiating or responding to others’ contacts, playing functionally and not repeatedly, communicating to others more than to himself, showing more interest in people, using language socially, occasionally having reciprocal conversations, cooperating, showing empathy and many other skills that can be built into the effective social life that defines success in autism.

A global ‘green flag’ occurs when the child is showing fewer ‘red flags’ over time or when they are less autistic-like in certain environments. It is now clear that autistic behavior is not everywhere and with everyone. Autistic behavior varies as the child’s environments vary.

WHY ARE RED AND GREEN FLAGS IMPORTANT?

When a child is seen as a list of Red flags, people often attend more to negative behaviors and less to positive ones that a can be built socially. Attending to red flags can result in increasing them.

Focusing on red flags often frightens parents into a state where all they see is negative things. Red flags depress parents and a depressed parent often gives up or gives up opportunities to help the child themselves. They give professionals many tasks that only they as parents can do at home in their daily interactions. Red flags can get parents into a habit of getting rid of behaviors rather than building positive behaviors (Green flags)

Focusing on “green flags” gives parents hope and motivation based on clear evidence. “Green flags” show how the child is developing and where support is immediately needed. They give the parents a place to start to have successes. We find that when parents and professionals respond to the ‘green flags’ they get more of them. Often the most effective beginning goal for a child is to have him do more of their green flags and do them in interactions with people who are matching, balancing and responding to them. Parents will even find that there are ‘red flag” and ‘green flag” people, that is ones who their child does poorly or well with.

Discuss the “green flags’ with your family and others so everyone is supporting your child’s progress rather than focusing on his problems. Use the red flag-green flag approach in your IEP plans with the school. Specify the value of including green flags in the goals so the child has some success to encourage him through the difficult goals.

IEP Alert Level: Low

We had another IEP meeting last week.

What is it about these meetings that freak me out so much? 

Allow me to catch you up to speed on where we are in the whole world of IEP.  J-man is getting his speech and special-ed teacher time at his wonderful child care center, J&J.  His J&J teacher also works with him within the classroom and has been involved with implementing his IEP.  We go two days a week, and so far he is doing well.  Come summer, he will get three observational sessions with the District representative (a teacher?  a speech therapist?  who knows.... apparently they don't know either... *sigh*).  The purpose will be to check in on how he is doing and what recommendations those staff can make to deal with issues or concerns that may come up over the summer months.

And that was what the meeting was about:  Summer plans. 

The transition from our Birth to Three staff to our current staff has been a bit of a struggle...for both J-man and myself.  Of course, Kristin was outstanding.  But it is also that the new folks just don't know him... and me... very well.  And I worry that they look at him with a "glass is half empty" kind of look... read him in the worst possible way, the worst possible light.  I am not saying they do, just that I worry they do.  So the other purpose of this meeting was to do a little "now that you have worked with him a little, thoughts?" kind of meeting. 

So, we started out the meeting with one missing:  The Special Ed teacher.  Doesn't bode well, does it?  But we go on with our Speech therapist, the J&J staff, and us.  We went through the goals and where he current stands (informally).  It was good... our speech therapist had just had a really good session with the J-man (he has been slow to warm up with her) and was able to get some good information from our J&J teacher about other things she has been working on.  I think she was surprised at how much he is doing.... because he rarely does it for her.  I chalk that up to the time of day and her being new.... he just isn't a morning person, and doesn't give it up easy.  He makes you work for it....

It was also wonderful to hear what he is doing in the classroom, and how much his J&J teacher appears to love him.  She glowed when she related stories, and I never got the sense that she was overwhelmed or lost when it came to working with him. The J&J staff also related their summer plans... they are changing the configuration of their room to accommodate a lower teacher-student ratio.  J-man keeps his favorite teacher, but now it will be only 1 to 7 versus 1 to 10.  Color me THRILLED!!!

We discussed goals for summer, and then move to the fall.  And then she dropped the bomb...  she had placed J-man on the list for the school district preschool for the fall.  Even though she knew... and admitted she knew... that we planned to continue at J&J.  Lucky for her, Daddy had already left the room with J-man.... he might have come unglued.  She (hastily) made her case:  if he got into one of the classes with a specific teacher she knows and thinks very highly of, it would be wonderful and we should go for it.. she said "Kristin-like" wonderful.

So GEMM stayed in check and I listened. 

She said he didn't know what class he would get into, because that is based on busing....

"Hold up,' I said, "No Bus."

"Oh, well you could drive him, but he would probably love the bus." She stated.

"No bus. Period" I said.

Are they on crack???

So basically I am in a bit of a holding pattern.  We are thinking about it.

Now, before you start screaming at your screen "What about J&J?!?!?!".   We won't leave them....  this would be an add on.  He loves J&J and I love J&J and that is that. 

Good meeting.  Confusing meeting.  Not sure what to do next meeting. 

Lucky for me I have some time to decide.

The One Where I Ramble About Stuff I Don't Know Anything About

Confession: I am now going to talk about something I know very little about.

Homeschooling.

In fact, I can sum up what I know about homeschooling by referring you to the TLC show "19 Kids and Counting" with the famous Duggar family. That's it.

I have always been a huge champion of Public Schooling. I, myself, am a fine product of the public schools. And my family and my husband and his family. I have never been a huge fan of private schools. When I lived in Virginia it always just felt like another way to segregate, because only people with money can go to private schools. Don't have to hang out with the riff-raff poor, and certainly don't have to pass bills to pay for that public school funding. I don't know, it just always bugged me a little. Religious schools were a little different. I could get how a family might want to immerse their child in a religious education. But, again, I have always believed that educating children in an atmosphere accepting of differences and tolerance was a good thing, and again... the whole segregation thing.... well, private school just never was my thing.

And Homeschooling? Well, that was what people who were too paranoid to go to private school did. It seemed really really fringe.

Until recently....

I am a member of multiple special-needs child message boards and websites. And regardless of whether the children have autism, learning disabilities, speech delays, or other significant medical and developmental needs, I have noticed one consistent trend....many of them are homeschooling their children.

I mean, A LOT!

Based on the stories I read, it is largely due to an overwhelming sense of frustration with the school systems, especially related to getting appropriate services for their child. There is this general sense of acknowledgement by these parents that the school either:

A) are not up to the task, or
B) don't care about their child's needs or even understand them, or
C) won't listen to and partner with parents, or
D) all of the above.

So they pull their children out, teach themselves to be teachers, and take on schooling at home. And although I am still a fan of the public school system, and although I believe they can be great, I sorta get these parents.

I guess you can only fight so many fights before you can't fight those fights anymore.

What I wonder is this: Do school districts care that these families have so little faith in them that they choose to do it themselves? Do the administrators worry? Do they reflect at all on what their mission is and how they have lost the faith of these families? Or do they chalk it up to "crazy parents"?

I don't know, but it worries me. There is a lot that is wrong with the educational system, and people WAY smarter than me can discuss it ad nausem. But I want to believe that at its core it is still good. And slowly, my faith is being tested.

One for Team J-Man

I know you have been waiting.

You have been wondering.

What happened?

Did we get what we asked for?

So let me take you back to last week, Meeting Day. Head Honcho leaves with promises to "look into" what they could do and if they could "work out" an exception, and to get back to me as soon as possible. And she did. The next morning I received a call from Head Honcho, and it goes something like this (note liberal use of paraphrasing):


HH: Good morning. I wanted to let you know that I have looked into the issue of getting J-man summer service at his child care....

Me: Yes?? (note hopeful sound in voice)

HH: ... and I consulted with Advocacy Agency and two other school districts and they all said that summer sessions are not required to provide those services, so we will not be making any accomidations in the plan that we can provide. We can offer your son ESY in a special needs classroom.

Dead silence on my end.

The Green-Eyed Monster Momma woke up, stretched and muttered "What the *%$....?!?"

HH: ... I know this isn't what you wanted, but it is what we are willing to provide...

GEMM: So, what you are saying is that you just called Advocacy Agency and they said you don't have to do it? And you aren't going to try to help us ...?

HH: Well, yes... you may call Suzy Advocate and talk to her yourself. Her number is .....

GEMM: Yes, I will call her and get back to you. (note cold tone of rage in voice)

So, GEMM calls Suzy Advocate. After an hour of discussion (or arguing... whatever) with Ms. Advocate, she has basically told us this: Because the Extended School Year Rule does not address Least Restrictive Environments, they don't have to comply.

What?!?!

Basically, the argument is that the rule doesn't talk about it, so they don't have to do it?

To me and GEMM, that is complete BS.

I called the Department of Education and talked to the specialist there. I explained the situation, and my confusion about why they would say that they did not have to comply with IDEA/LRE in the summer. She laughed. I asked her if she could provide me with something that explains it. She said "Well, the reason you can't find anything is because there isn't anything! That is not true, and if I was you I would request a mediation meeting" (fancy talk for a sit down with the Department of Ed and hash it out... not to be confused with a Due Process meeting, which is bigger and scarier).

'Nuff said.

A little research later (and lots of Law reading), we wrote a Letter. Allow me to dazzle you with just the highlights:

J-man qualifies for ESY via the "Self Sufficiency requirement. Specifically, J-man needs to maintain skills regarding his IEP goals for social development and communication as reflected in Minnesota Administrative Rule 3523.0755 Subpart 2 D 6 'development of stable relationships with peers and adults" and 7 "basic communication".

ESY is able to comply with IDEA 2004 requirements for Least Restrictive Environments. J-man's educational setting does continue into the summer. Additionally, Minnesota Rule 3525.2335 governing Early Childhood Program Services, Alternatives and Settings states in Subpart 2 B 3 that "A school district must provide direct and indirect special education services by district special education staff attending a community based program". There is no stated waiver or exception for ESY services noted in this or any other rules. Additionally, nowhere in the ESY Rule is there any reference that suggests they are exempt from complying with the requirements of IDEA 2004 for a Free Appropriate Public Education. Indeed, the Minnesota ESY rule apparently only addresses criteria for these services, not the services themselves, and therefore should still need to comply with IDEA. Additionally, IDEA states when implementing ESY services the public agency may not "unilaterally limit the type, amount, or duration of those services".

Yeah. Bite me.

It was sent, and we waited. And waited.

And today... SUCCESS! Apparently, they have found a way to "work it out" for us.

Yep, I thought they might.

Most excellent.

Battle Interuptis

I am exhausted and rocking a major headache, so I will give you all a brief low-down on our school district meeting and go to bed.

Essentially, here's what happened. The entire team (Birth to Three, Three to Five, and the Head Honcho) came to the house and we all sat around the table and pow-wowed. The Head Honcho came out strong and a wee-bit hard-assed, and if I was anyone but me I might have caved at that moment and laid down like a rug. She informed me, with a lot of academic high-flalootin programy wordage that they are not required to provide the same services during the summer, they are not held accountable to the Least Restrictive Environment requirement, and that what they have to offer is good enough. Now, this is not what I have read, or heard, and I have done some research....

I didn't cave. I am not sure I came out swinging, but I do believe I made my point clear: J-man greatly benefits from where he is, will not benefit from moving his services to that location, they cannot provide what he needs there, he does qualify and should be able to get services where he is at. I explained that while I understand they don't have the program he is in during the summer, they should. And that, given his unique needs and situation they should make an exception to the hardcore position they have, since what we are asking serves him best and the other option does not.

My hubby popped in and provided our united front, plus a steely eye and presence that says "we mean business". Plus a few well placed (yet polite) words.

She didn't cave.... exactly. What she said was that she would "look into" whether they could make an exception for J-man for the summer. She needed to "consult with others" and will get back to me "soon".

So where does this leave us? Not sure. I know that if they turn us down our next step is to go into mediation with the Department of Education. While we did not out-and-out say we would take it that far, I am fairly sure she got that vibe from us. And we would... in principle alone. However, I find it utterly amazing that we might have to go there.... for 3-4 visits over the summer??? Really??? Don't they have better way to spend their time? So, I am hoping that they can "work something out" so we really don't have to make a mountain out of molehill.

Link UPDATE: For those of you interested, this is a wonderful commentary: Into the Mainstream

On Meetings and Other Battles

So apparently I am going to become "that parent".

Let me start with the story, and then move on to the rant. It'll be a little more coherent that way.

A few weeks ago we met the J-man's new teacher and speech therapist from the school district. Over the next few weeks we are going to lose Ms Kristin (much to our deep sadness), and Ms Becky and Ms Jane will be working with him at his preschool. Of course, Ms Kristen has set the bar shockingly high, but I am going to remain hopeful that his new teachers will be as excellent.

During this initial meet-&-greet with the new folks, the subject of J-man's ESY (Extended School Year) eligibility came up. Essentially, ESY is summer school in 'special ed' language. And yes, the J-man qualifies. Apparently, however, they do not provide the community based services in the summer like he is getting now. The only way he can get any coverage of either speech or teaching is if we enroll him in their multi categorical classrooms.

Now, we have already addressed the issue of the multicat classrooms. We toured, we considered, and we rejected the idea. The reason he is enrolled at his current preschool is because we believe, strongly, that typical-developing peers are a tremendous benefit to our boy. He has been hugely successful in this environment, and the idea of putting him in an environment that is exclusively with other special needs kids (many of whom have significant behavioral and language issues) does not jive with our goals for him.

Now, the rant.

See, this all goes back to the idea of Least Restrictive Environments and Inclusion. In a nutshell, inclusion is the ideal in which all children learn together, regardless of disability or ability. According to Wrightslaw, the Individuals with Disabilities and Education Act states that the Least Restrictive Environment policy says that school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers to the maximum extent possible.

Dan Habib eloquently deal with the issue of inclusion for his documentary Including Samuel.



I highly recommend this documentary (check out your local PBS station for viewings!)

Now, the issue of inclusion is a thorny one. I know this. Inclusion is difficult to start, requires lots of teacher training, good classroom supports, and a commitment from all involved to make it work. It isn't always easy. Another documentary series, Educating Peter (and later, Graduating Peter), highlights both the challenges and rewards of inclusion (another series I highly recommend).

I believe that whether or not inclusion is appropriate for a child is truly on a case-by-case basis. However, I also believe that.... done well... inclusion should absolutely be the goal for the vast majority of children. And for the J-man... well, this is a no-brainer. His current achievements in preschool, with appropriate support, is crystal clear. Hands down, inclusion is the only way to go. He needs typically developing peers. They help him learn. It is essential.

So now, we get to have a meeting with All-Powerful School District people to argue about getting him some summer service at Jack and Jill. Have I mentioned that we PAY for him to be in preschool... a lot of money...? And we are only talking about 3-5 one hour sessions over the summer to address issues and help him maintain skills?

Yeah.

So I get to be "that parent", and see if I can convince them that his least restrictive environment IS preschool, and they do have an obligation to continue his current programming. Wish me luck, because GEMM might have to peek out on this one.

Optimism & Hope

Some people might say daycare is a bad thing.

I say daycare has been Jonathan's lifesaver.

He loves it. LOVES it. He has evolved from this anxious, unsure child to this confident, excited, social boy. He walks in, goes to his locker and willingly takes off his coat and hat. Puts them away, by himself. Walks with me, hand in hand, to his room and knocks ever-so-gently on the door. We go in and he turns to me, gives me a hug and a kiss, and pushes me out while closing the door in my face. Yeah, mom... don't let the door hit you on the butt on the way out.

He joins in classroom activities willingly and joyfully. The other children in the room apparently love him. I am told that there are a few children who are particularly interested in him, will pull him to activities and try and engage him. The amount of things he has learned is utterly amazing. I believe that... for the J-man... being with peers who engage him, whom he can model after, learn from, and enjoy has made a huge difference.

His mouth is moving. And moving and moving. He is starting to imitate sounds...sounds I and hubby make, others make, even things on the TV. He is trying words. Mostly, he gets the first sound in the word, but he is making so many more attempts. It is encouraging. He still doesn't always try to use sounds or words to communicate his wants, needs or thoughts, but the fact we are hearing more noise out of him... aaaahhhhh, heaven.

I am not sure, but we might have had the best IEP meeting ever last month. Definitely, the bar was set very high for every subsequent meeting we have. We made the decision to continue to get the special education services at Jack & Jill Child Care instead of moving him into the district classroom, and it is the best decision we have made so far. The center had TWO staff in attendance at the meeting and they were completely willing to work with Jonathan on his goals. The district folks were wonderful, and we came up with a plan that I think truly addresses what needs to be the focus for Jonathan right now. I am just thrilled with the way things are going...

To add to it all, we are starting new speech therapy next week. We decided to go back to Associated Speech with Janet Jacobs, and they were willing to take us on. She is advocating a different approach with the J-man, and while I am not sure what that will look like, I am optimistic about what we might gain.

Next week will be a tremendous week for the J-man. In addition to starting his new speech therapy, he is also moving into the preschool room at Jack & Jill. With the big kids! I am nervous but extremely optimistic. I think he will love it. And I think that we will start to see even bigger and better things down the road.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence. -- Helen Keller

Goals

How many two year olds do you know who have goals?

Next month, we have Jonathan's IEP meeting. An IEP (Individualized Education Plan) is essentially a road map or 'contract' for establishing educational goals and tracking those goals. The IEP not only establishes these goals (and some kind of metric to measure those goals) but also helps establish the ways in which these goals will be met. Generally speaking, the goals are built by information on the the educational assessments previously done, and on both parental and teacher feedback on where the child is and where they need to go. The IEP is like the Bible for special education students. It guides all.

Crafting a good, quality IEP is not an easy task. It requires an understanding of the child's strengths and challenges, how they learn best, how to capitalize on those strengths and minimize the impact of the challenges on overall performance, and how to address the areas of weakness in a way that is most effective.

Parents come to the table with the Child Knowledge. We know our kids. Alas, we don't always know the best way to address the issues and implement them in the classroom. We don't always know the words to describe the subtle problems and issues, and frankly... if we could fix our 'broken' children, we would.

In a perfect world, teachers and therapists have the education and skills. They are suppose to know what to do and how to do it. And we parents look to them to help craft the perfect IEP... the IEP that will provide everything the child needs to progress... no, EXCEL!!

.

Do I set expectations too high, perchance???

So with Jonathan's IEP coming up, I have started thinking about what kind of goals we should be establishing for him this next year. I have been brain storming a list of "good goals" for his IEP.... and I found that this was not an easy task! It is so hard to articulate what his goals should be in a meaningful way. It is so much easier to just say what I want....

I want him to say "Hi mommy!" when I walk in the room.

I want him to share with me his interests and show me things he likes, not just get me to do things that he needs or wants.

I want him to play with me, not just by me.

I want him to have friends. Real friends that he likes to see and wants to play with.

I want him to try and tickle me. And chase me. And chase and tickle me.

I want him to be able to use his imagination and play creatively.

I want words.

Lots and lots of words.

Am I asking for too much?

A little spooky...

My analytical side does not believe in fate. It does not believe that God micromanages our lives.  It believes that we have free will, and that events that happen in our lives that seem like fate are really just freakish coincidence.   I am rational, logical, intellectual, and not persuaded by fantastical talk.

And then, there is my other side... my secret side.  This side believes in fate, in a guiding hand of God, in Santa Clause and in the idea that "there are no accidents".

This side looks back on my life and sees some crazy acts of fate.  The way my husband and I met (long story).  The fact that I have this wealth of previous experience and education in the area of early child development and autism, which in many ways primed me to be aware of Jonathan's issues early on instead of catching it later. 

And now, another example of the crazy hand of fate.

In April, 2008, Jonathan was just starting to be evaluated.  The school district hadn't yet started to test him, speech therapy had just started to get involved, and we were waiting on an appointment at Children's Hospital.  Anxiety was high.

One night I was watching the local evening news and saw a story celebrating a "Top Teacher".  Only half watching, I keyed in when the story explained that this teacher worked closely with young children who had autism.  Obviously, given my fears at the time, this caught my attention.  I distinctly remember thinking "If needed, I wonder how we would get Jonathan in her class in the future".

Time passed, and when we expressed concerns about our first teacher, the district very kindly assigned us a new teacher, Ms Kristin. And we have been massively impressed with her ever since... her knowledge, her sensitivity, her willingness to work with us and Jonathan, her observational ability.... I could go on and on.   We sorta felt that the district must have given us their best, given the fact we bitched.

And... strangely... she felt familiar.

Today, something sparked my memory about that news story.  A little Google search later and...



Ms. Kristin is the exact same teacher. THAT is a little spooky...

Of course, they were completely right, Ms. Kristin.  You are a Top Teacher!

Alphabet Soup

Confession: I am an NPR junkie.

I am not sure when I went from cool hipster listening to the newest, coolest, obscure alt rock bands to cruising around in my Saturn VUE (the ultimate "non-SUV" soccer-mom-mobile) listening to such riveting programs such as The Splendid Table, Speaking of Faith, Car Talk, Marketplace Money, BBC Worldnews, This American Life, and so on. But so it is... I am a NPR junkie/intellectual elitist. What can I say?

Anyhoo. I was listening to NPR the other day and they were doing a program on OCD (obessive compulsive disorder). Now, I fell into this show at the tail end, and so I missed a large percentage of this discussion. And, to be honest, I was only half listening to the rest as I was driving J-man to yet another appointment. Nevertheless, my interest was peaked when a listener called in and asked the Expert Psychologist about her son who has autism. She stated that she had been trying for many years to get the doctors to add an OCD diagnosis as well, but was meeting resistance and wondered if the Expert Psychologist could comment. Now, of course, because I was only half listening I missed the first part of her answer... but my ears tuned into this part (which I am completely paraphrasing. Never have I wished for Radio DVR more. Expert Psychologist, please forgive my swiss-cheese memory, but I hope I recalled the spirit of your statement):

"... parents end up with a child who has what I like to call Alphabet Soup: PDD, OCD, ADHD, LD... all in the same child. But instead of looking at these as four different diagnoses or disorders, we should instead focus on this as one nervous system that functions in a particular way. And the individual problems in each diagnosis are actually a part of a whole neurological picture... where each set of behaviors no doubt influences other elements of functioning."

One brain. One nervous system. Not 4 or 5 different disorders. One brain that functions in a specific way, in a way that creates specific set of 'problems'. And those problems are not always neat and tidy in the way we "label" them. So, in order to attempt to capture the essence of this nervous system, doctors and educators rely on this Alphabet Soup approach. Of course, Alphabet Soup doesn't work. It doesn't work because these nervous systems are actually people, each which is unique and individual in its presentation of the particular challenges. But instead of crafting a carefully articulated story of specific challenges that one child may have, we get diagnostic codes and shortcuts and assumptions.

Which is why children have parents. And why we, as parents, must force ourselves to become absolute experts on our child. I cannot abdicate my role as the J-man's voice. We are coming up on his Big Evaluation and IEP planning for when he turns three, and I need to gear up and get ready.

.

I have been told that the Big Evaluation is merely to qualify him for services. Essentially, the school district needs to know that he is delayed, and delayed enough to qualify for service. They will ask us questions about his development. They will test him on standardized tests measuring speech, language, sensory issues, and cognitive development (which I have a HUGE problem with, but that is for another post). They will add up numbers and 'quantify' the J-man. And they will, no doubt whatsoever, qualify him for the special education.

.

Our school district has a designated evaluation team that does all the evals for special education. The reasoning behind having a designated team is a good one... you have experts in evaluation, who know how to administer the tests, and who do so in a somewhat systematic way. That way, all children who are tested are tested with essentially the same people, the same way. The hope is that by doing it this way, the results can be seen as reliable and valid. That his scores compare to other kids who have the same experience.

.

Except...

.

... what does that actually tell us? That... when dealing with complete strangers in an artificial setting, the J-man can or can't do X, Y, and Z? That... with no supports whatsoever, my language delayed, crappy auditory processing, socially delayed and possibly autistic TWO AND A HALF YEAR OLD can or can't do X, Y, and Z?

.

I guess if the goal is to to see if he will qualify for service, this format is a goldmine. However, if you actually want to see what he CAN do, and do well, this is not the way to do it. How will they really be able to know who he is and what he really needs? Can this team of complete strangers assess the root of his processing difficulties, his motor planning issues, and social needs, and come up with a valuable plan that addresses those issues in a meaningful way? Shouldn't THAT be the point of the Big Evaluation?

.

So, I shall be putting on my game face and going in...