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.


  1. You're in a horrible position. It sounds to me that your instinct that he doesn't belong in inclusion is correct. It's a question of where he'll make the most progress and if his disabilities are so severe that he'll need too much attention in a regular classroom. When a parent and school are at odds, it's a tough situation to say the least.

  2. When I interviewed for the teaching position I held previous to this one, I was asked what it meant to me to be an advocate for children. Of course I thought this meant this would be an amazing place for me. They want an advocate for children! Yeah! But that's not really what they wanted. They wanted someone to do what they said, while making sure the children felt loved and advocated for. They wanted someone who would betray the children. Ewww... It was awful.

    Anyway, can't they do partial inclusion? I teach science, and all of the kids get science. It's great - we get to grow plants and go for walks outside and take care of animals. We watch videos and sort shells. A few kids every year are only included in a few classes, and then they are pulled out for the rest (life skills kind of stuff). They usually go to science, art, and music. Sometimes adaptive PE, sometimes social studies, sometimes art. It really works out great, for everyone. Maybe try to figure out which general ed teachers in the school are welcoming and accommodating to including kids?

  3. Tiffany,
    You are a wise one! Yes, this was a question I had also. I kept wondering why we were talking either or and not finding a spot in between. But after a great conversation with an inclusion specialist, I think we are ready to find a way to modify and make steps toward middle ground.

    Thanks so much for reading my blog and your response was right on!
    Liberty Rose!

  4. I went to my sons conference recently. He's a 4 yr old in a self-contained pre-school. I love the school.
    His birthday is in July. Talk of kindergarten began, and I stated I wasn't sure if I wanted him to go or not.
    I had a typical child with a july birthday, and didn't think he was mature enough to go. I was convinced otherwise, and have always regretted not sticking to my instincts.
    Well... when I say I may want him in the pre-school and additional year, I'm told "we don't do that". My question was: Is it against some law, or do you just not want him to?
    I think the SW's back went up a bit, and she proceeded to tell me it's in the childs best interest.
    My return was the school district is obligated to educate Ben until he's 21. What's the difference if we add time on the front or back?
    We have always had a good relationship. We were all able to sit back and agree, nothing being said was personal, but all just looking out for Ben. That was a positive thing, and the fact we all believed it helped.
    Do you have an opinion on holding back a child with moderate/severe autism for an extra year? Letting him gain that year of maturity.

  5. My thoughts on this are very fluid. I held my neurotypical son back many years ago due to divorce and his immaturity. It worked for him. I would have continued in home therapy rather than send Superman to school if he had not been getting useful services. I sometimes wish I had kept him home and worked intensively with him using the Son Rise program. It served us quite well when we used it. If you feel you can provide your son with the research based therapies he needs in an intensive way, then I would hold him back. If not, keep him in a program where he can supported and encouraged to be comfortable in our world.
    Google The Options Institute and the Son Rise Program. They do amazing work and have been on the cutting edge since the 70s! I spent a week there and learned so much. More importantly, I was given hope.
    May I ask what state you are in? That makes a big difference as far as services.
    Please keep in touch and email me at for further chats. We can probably help each other through lonely moments.
    Libby Rose


Although I am dangerously opinionated, I am a flexible thinker and welcome your thoughts.