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!

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.

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.

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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?

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!

Less Traveled Roads: A Repost

As we head into fall, I am struck yet again at how this journey is so different from other parents' journeys.  I have been watching all kinds of "news" reports about getting Back to School and all the concerns parents and kids may have, and I think to myself "PLEASE....  you should read some of the blogs I do!".  Because let's face it, the coming school year brings a whole host of new challenges (and anxieties) for special needs parents and their children. 

And we are right there with you.  New "diagnosis", new teacher, new therapists, new worries, hopefully new goals... this time last year I felt way better than I do this year.  I guess my feet are little stuck in the mud. 

In honor of the coming IEP Season (thanks again to Vicki for that phrase), I am reposting this piece I wrote last year. Forward to any friends, teachers, and family that may not understand!  (My little sarcastic updates are in yellow)

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Less Traveled Roads

I shall be telling this with a sigh

Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

--Robert Frost

There is this famous essay by Emily Perl Kingsley called Welcome to Holland. In this essay, she compares the difference between parenting a 'typical' child and a 'special needs' child to planning a trip to Italy, but ending up in Holland. While it is an interesting analogy, it sounds too easy. No offense, but Holland and Italy both sound pretty swell to me.

For me, I tend to think of it a little differently. I look at parenting like taking a walk in the woods. Now, most parents hike the well worn trail. It is wide and well traveled, with many other parents hiking right along side you. You see similar overlooks and panoramas, beautiful vistas and mountain creeks. There are definitely hills to climb, bugs to avoid, and the occasional rain storm. And sometimes you are the unfortunate one to step in the doggie-doo or trip on a big rock. But you have the benefit of others who travel with you on this same path, and most share the same experience.

For the parent of a special needs child, parenting is different. There is only a very thin trail, or maybe no path at all. Grass and tall weeds cover the forest floor, and there are unexpected mud pits that suck your shoes in. There is wildlife galore; some of it beautiful and some of it scary and dangerous. Gnatty, swarmy bugs bite. You aren't very sure where you are going or what direction to take, and the few guidebooks or fellow travelers you meet all have a different opinion or direction in mind. Mostly you hike alone, but occasionally meet others who hike these woods too. They know your hike because they are doing it as well. They can share tips and tricks to making it though the woods. But always you must hike on your own, because no one's journey is the same. Eventually you learn to navigate this woods. Slowly but surely you learn to avoid the mud pits, to defend against the scary critters, and to cut though the tall grasses in order to make the journey go more smoothly. And you hope that you are going in the right direction and that you aren't going to run into a bear or a mountain lion. You hope for the beautiful vistas, but you are never quite sure where you might end up.

Last week I attended a class on the Individuals with Disabilities Education Act (IDEA). According to Wikipedia, IDEA is a United States federal law that governs how states and public agencies provide early intervention, special education, and related services to children with disabilities. Essentially, IDEA is the rules of the game that States have live by when providing special education services. This course was put on by a parent advocacy group (PACER), and was organized in such a way as to explain to parents the essential "what you need to know" rules. It covered topics such as the evaluation process, getting services, evaluating those services, and how to troubleshoot the issues and conflicts that could come up.

I wanted to take the class because as we approach the J-man aging out of the Birth to Three programs and entering the next phase, we will be starting to revise both the types of services he gets and creating an Individualized Education Plan (IEP) for him. I figured it might be pretty important for me to not only know the rules of the game, but also how to navigate the system. Avoid the mud pits, tall grass, and toothy critters as much as possible.

What struck me was how lost and frustrated so many of the other parents were. One mom, upon learning that she should have been receiving quarterly reports from her son's teachers and that he was grossly overdue for a re-evaluation (by 1 year, no less), burst into tears. Angry pissed-off tears! Another mom's voice cracked and her eyes welled up with tears when she explained that her son would never progress beyond a 4 year old level, and she wondered how she could ever make a meaningful IEPs for him. And yet another mom explained her frustration in finding an appropriate school district for her child in a recent move (been there, done THAT).

We have been so fortunate. Jonathan has a brilliant team (umm, ya, that is changing??... ) and we have had very few struggles thus far ( That's changing too.... sigh ..  ) While I worry on a daily basis about where we are going and what we are doing right or wrong, Jonathan could care less. He is happy. And I think... no, I know... that the reason we have had it nice so far is that I am always willing to ask the questions. To be his advocate. And I have enough knowledge and skill that I can do it right. It doesn't mean I am not filled with doubt everyday, but I know we can make it.

My heart breaks for other parents on this journey who are struggling. There is no real guidebook for these woods, and feeling lost, scared, and confused can become a regular event. When people try to live from a place of stress and fear, things always go terribly wrong. And yet, this is where a lot of these families are ....trying to negotiate the forest without a map, a clear trail, and a solid endpoint.

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.

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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.