Sunday, March 21, 2010

Determining What Is Best

I made the trip to a neighboring state to attend and participate in an IEP for Incredible Friend's (IF) son Delightful Boy (DB).

I had many phone conversations with IF in preparation.  I was ready to go.  I had boned up on strategies, full inclusion models, Down's Syndrome, apraxia, strengths based IEP writing.  I was ready.  I put my favorite CDs in the car and was there in 3 1/2 hours.

When I first saw IF, who I have not seen in 13 years, I was struck by how small she has become.  Was it the burden of her life situation that caused this?  She still has a beautiful smile and wonderful giggle.  I could tell she was nervous about the meeting. She was also angry and ready for a fight.  She believes full inclusion is best for her son and is angry the school has not provided that in a meaningful way.

So, we enter the conference room where at least 5 people are already seated at the table.  Not one open, warm greeting was made.  It was tense from the moment we walked in.  I would venture to guess it was tense before we even parked our cars.  You know the kind of meeting.  The tension has been building all school year and now here we are.  So did it make sense to only schedule an hour for an IEP like this one?

I busied myself looking through some of DB's work samples, making notes regarding purpose, independence level and such.  Everyone was finally there and in place, there was no small talk, no attempts to reach out to IF with any sort of warm chit chat to thaw the room, prime the pump for collaborative and cooperative discussion.  None.

IF asked us all to put name tags on so I could remember who was who.  Thoughtful idea... why didn't the school personnel do that?  Introductions started to my left with principal, then sped director who was probably about 12 years old, then social worker, PT, OT, classroom teacher, SLP, parapro, resource teacher, next year's classroom teacher, IF, and me.  Originally I was going to state I was a friend and leave it at the that.  But after sizing things up I introduced myself as a friend of over 20 years, a special education teacher of 18 years, mother of two special ed children, consultant and parent and child advocate.  I wanted them to understand my credentials and knowledge base as well as my intent.  So there.

Long story short (for my sake, as there were so many painful moments in the meeting I fear my post traumatic stress disorder will get triggered again).  The goals were crap, everyone was defensive, nobody was saying the actual words that needed to be said, and the leadership at the table was ineffective.

About 15 minutes into it when I had to keep reminding those with reports to share to tell me the goal and then report if it had been met or not, I realized we had a larger problem than I knew what to do with.

And being the kind of gal I am, I called it like I saw it.  I stated the tension around the table was palatable, that I needed them to describe more clearly what DB was and was not doing.  And as reports continued, and as I asked more questions, I became grief stricken, a bit sick to my stomach, and overwhelmed by the task at hand.

I made THE MOTHER of all realizations.  DB was lower functioning than I thought.  I wasn't sure full inclusion was in his best interest, and now I was in conflict with what IF perceived, believed in, wanted for her truly adorable son.  I hammered away at every reporter trying to get a clear picture of DB's independence level.

I began hammering away at the goals as written, because they were ALL academic in nature and poorly written at best.... here is an example.  To measure DB's progress in written expression they were using sentence scramble activities.

ARE YOU KIDDING ME??????  ARE.  YOU.  KIDDING.  ME.  !!!!?????

Upon questioning, DB barely writes his name, (low muscle tone and fine motor issues are quite problematic), reads at a K level according to the (Accelerated Reading)AR program they are using.

I will be honest here.  I was beginning to feel like I was in an altered reality.  I wanted out.

ARE YOU KIDDING ME?????  They are focusing on sentence scrambles when DB initiates NOTHING.  (Which is common among kiddos with apraxia)  How about we start with him using his Vantage communication device consistently? How about we use a more effective and appropriate reading program?  How about we help him with self advocacy?  How about we help him walk independently from the front  door of the school to his classroom?

But, how about we determine WHY he is so dependent?  Is it a function of his low muscle tone, does he have debilitating executive functioning issues?  Does he know in his head what to do and just cannot figure out how to tell his body to get him there?  Or, is this all due to his low cognitive functioning?

How about we focus on his apraxia and spend the bulk of the day teaching him how to communicate?  I don't care if he can unscramble a simple sentence.  If he can't tell me he has to use the bathroom, or is thirsty, or has a belly ache, I DON"T CARE if he can unscramble a sentence!

I don't care if he is fully included.  I don't care.  That is the least of DB's worries.

Keep in mind here that I had never laid my eyes on DB,  NEVER.

OK, so after 2 hours, we leave the IEP with a date for a reconvene.  No goals were agreed upon.  Nothing was accomplished other than we had a closer to reality discussion about DB than in previous meetings.  I established that I thought life skills and communication needed to be included in the IEP.

Please note that throughout the meeting we had some unprofessional behaviors like eye rolling and side comments... all in front of the parent.  Unbelievable.  IF got smaller and smaller as the meeting went on.  She did not say much.  She has lots to say, and it is all important as she advocates for her son.

After the meeting I met DB.  He is adorable.  He was sitting next to his parapro in his own desk in the back of the room.  He seemed oblivious to most of what was going on.  He has trouble sitting at a desk due to low muscle tone, I am not sure what they were working on, his peers were mingling among themselves, he responded mostly to IF's camera and the buttons on my electronic keys in my hand.  He complied with and was excited by standing with me for pictures.  I did not sense any connection with anyone other than IF.  He responded to yes and no questions, but without IF there to interpret, I would not have known what his responses were.  More time with DB, and I would have caught on.  His responses to yes and no were consistent, so he does have some consistent expressive communication. So let's start from there.

IF and I had a nice lunch, we were both worn out, and I used the 3 1/2 hour drive home to process.

Since then, IF and I have had some really difficult discussions.  I have had a phone conference with the principal, I have done hours and hours of consulting with other experts, internet searches, gathering information about full inclusion models, cognitive disabilities, apraxia, and parental grief.
I will continue to be a voice for IF.  She knows I am not convinced full inclusion is in the best interest of her son, but if that is what SHE believes best for him, I will fight for that.  But I am struggling with if she can separate what SHE needs for him and what HE needs for himself.

I get it. Believe me.  I get it all.  I get the school side.  I get the parent side.  But most importantly I think I get what DB needs.

And for whatever reasons, he is not getting it.

I invite all of my readers to comment on this one.  I need some guidance.

I don't do my best thinking with a broken heart.

Tuesday, March 9, 2010

Sometimes My Head Is Too Busy And My Heart Too Heavy

I have come to my desk numerous times since I last posted but end up just staring at the screen.

My head is swimming with ponderings about so many things.  When I try to sort them out and categorize them, I can't.  They are a jumble of inter-related bits and concepts that I cannot separate.  They include all things special education, best practice in general, political points of interest that are not working in effective education's favor, poor school administrators......well, you get the picture.  you really do not want to peek inside this head right now.

My heart is heavy on behalf of an incredible friend of many years (and a state away) who is grappling with what is best for her son with Down's Syndrome.  She and I have always gotten each other, but now that we have special needs kids in common, it is an even tighter connection and I love her dearly.  I admire her beyond words.  And as I write today's blog, I realize that is what this blog is meant to be about.  

Let me list my other heart heavy issues and I will return to my Incredible Friend's (IF)  current battles.

My heart is heavy on behalf of Movie Man.  His challenges are great and he surely must be a genius to be experiencing any successes in school.  
I am heart heavy when I watch what has happened to my program in my absence, how ineffective public education can be and is in too many cases. 
The biggest contributor to my heavy heart is my inability to figure out if I should go back to  my old job or cut the cord and move on.

So, back to IF.  She and I met as teachers.  We taught in the same elementary school.  Me as an LD teacher, her as an SLP.  I learned a lot from her.  We were very dedicated to collaborative co-teaching when appropriate and even presented about our findings at our state board of ed conference one year.  It is remarkable that I have not driven her crazy yet.  I am a fly by the seat of my pants kind of gal.  She is much more precise and thorough.  We have differing opinions and practice in some pretty major parenting ways, but we respect each other greatly.  She is a true friend.  What we have in common is our love for our kids, our belief in our kids, our advocacy for our kids.  We understand each other's pain and heartache.  We understand each other's rage and frustration.  We confide some of our ugliest thoughts about parenting special needs kids.  In fact, she is the only one I am completely honest with about the realities of parenting my kids.

Anyway, IF is in the throes of a big battle.  Not only with the school, but I think within herself. This is common among those of us with special needs kiddos.  This tricky balancing of advocating, wanting our kids to be normal, wanting the world to accept them and accommodate them, with what our kids can really handle and accepting their limits.  

This means that we have to abandon (at the very least, adjust) so many of the dreams we had for our kids while they were still safely in our wombs.

So, IF has a 4th grade son with Down's (Delightful Boy).  He has significant communication challenges, sensory issues, health problems, and a really crappy IEP team.  IF has fought to have her son fully included all along.

But it seems she is at a significant crossroads. It seems that the team has reached its potential and limits.  It seems that Delightful Boy has also reached his tolerance level for much of his school day. For whatever reasons.  For reasons nobody on his team has taken the fricking time to figure out!!! There has been no systematic analysis. There has been little to no communication with IF about the specifics of Delightful Boy's behavioral changes. The latest communication she got was that Delightful Boy was passing gas in class at a much more frequent rate than in the past.  

WHAT???  Are you kidding me?  

'And, by the way, Delightful Boy is flatulating a lot.'  So, what is IF supposed to do about that?  Is it louder, stinkier, accompanied by discomfort, causing disruptions in class, affecting social interactions?  

IF has also detected a bit of a conspiracy among the team members... like they are building a case for some argument to change Delightful Boy's placement....nobody is talking.

And then IF gets the IEP invite and on the list was the school social worker, who has never been part of Delightful Boy's team.  

OK, that just wreaks of foreshadowing a shoe dropping at the IEP meeting.  IF is not stupid, could write meaningful IEPs in her sleep, and knows her rights.  The team obviously underestimates her and they certainly are not using her as a resource. It has turned into an us against the parent dynamic and I fear Delightful Boy will get lost in the battle.

It is hard enough for a parent to sort out what their special needs kid needs.  But to try and sort it out objectively when you are battling an ineffective team is impossible.  You need to be able to objectively consider what is best for your kid...but to remain objective when facing a team you perceive as borderline hostile is impossible.  Objectivity is easier when you are sitting across the table from people you know love and care for your kid, who really know your kid and have taken the time to understand him, who believe in your kid.

To sit across the table and develop a meaningful strengths based IEP is absolutely impossible if you (the parent) do not trust the perceptions of the rest of the team.  All your energies have to go to advocacy and 'selling' your child's strengths to a group of people shaking their heads in disagreement.  Your energies cannot possibly be spent in developing an IEP based on mutual beliefs about the student.

I plan on attending this IEP. No parent should have to face that alone.  

I will do all I can to listen objectively to both IF and the worthless team.  I will keep Delightful Boy in mind the whole time and I will insist this IEP team address his specific needs and if they cannot articulate in enough detail what his needs are, I will insist they do FBAs and BIPs  and reconvene the IEP until they can prove they know Delightful Boy and have a plan to help him grow in his way and in his time.

I hope I don't get escorted out of the meeting for disorderly conduct.

I love you, IF!