On PPT’s and Preparing for Kindergarten 

The effort to prepare for Kindergarten was more challenging for us then previous years.  Before the combination of honestly just being thrilled with the acceptance and support Rose received through pre-K and our admittedly  low- key academic expectations for a nursery school type setting and our own blissful ignorance of many interpretations of Inclusion left us with thankfully few, if any, PPT challenges. 

Our role, as Rose’s parents, had primarily been continuity and communication to help Rose and her teachers and therapists bridge the gap between home and school. And I think these relationships have worked very well and we’ve all been thrilled with the results. With much help and teamwork from the school, Rose has become a very interesting and capable five-year-old student.  And while Rose’s per-K classroom was technically a reverse mainstream setting where less than half the students were non-disabled peers, Rose has already enjoyed the inclusive benefits of friendships that have gone beyond the classroom. 

 Cheryl and I have found all of our PPT teammates to be wonderfully supportive both of Rose, ourselves and each other as well as being very skilled in their own specialties. Our new experiences with Rose have mirrored our early positive ones with Erin and Katie.  I have always been amazed at the skill, the energy and the devotion of people drawn to early-childhood education. Similar to the medical field, I sense that this is not just a career but a calling or a mission for the best of these folks.  Those of us whose children need their help greatly benefit from their willingness to care.

 Over the last year Cheryl and I had tried to learn more about Inclusion. At first, ‘Inclusion” was just an unfamiliar word and an idea that Rose would be in the regular classroom but beyond that the specifics were a mystery that we were slowly unraveling.   We had learned in general terms that Inclusion was both a civil right and the best way for any child to learn.  We knew the definition of the Least Restrictive Environment; that Federal law required that the regular classroom with appropriate supports be considered the first option when deciding a student’s academic placement.  And we were starting to become familiar with the general academic and social benefits of inclusion but we had no idea what the specifics of a successfully implemented educational inclusion experience were. What would they actually look like in the classroom?  What are ‘appropriate supports’? How much ‘Inclusion” was the right amount of inclusion? And despite our best attempts, there always doubts lurking in the backs of our minds; will she really be accepted? Does she really belong here?  Will we have the proper resolve when demanded? Would we push too hard for the wrong results? Our own ignorance and prejudices can be daunting obstacles that are difficult to unlearn and overcome.

 We do realize that we are fortunate to live today when the Inclusion of a child with Down syndrome in a regular Kindergarten classroom is on the verge of becoming generally accepted. Just recently this was not the case.  Two years ago in our state a class action lawsuit on behalf of children with Intellectual Disabilities (ID) was settled favorably after a 10-year litigation.  The case came about because Students with ID were so widely excluded from the regular classroom, more than any other group of students, despite the basic unfairness of segregation and the mounting evidence that the best educational benefits were to be found in the classroom.  The settlement laid out goals for school districts to move towards inclusion; more children going to their neighborhood school, more time in the general classroom, and more participation in extracurricular activities.  

Our town was stepping up efforts to comply with the terms of the settlement. In our medium size suburb of about 30,000 people and 4,500 students there are approximately 30 students in our schools with Intellectual Disabilities.  With so few a number it is fairly easy for town educators to know every student by name and every case by detail.  Over the last year, Cheryl and I have supported the movement towards an Inclusive education during our discussions with our town’s educators. So with the tide in our state and town turning towards inclusion, the capabilities at Rose’s school and the expressed willingness of us, her parents, we knew early on that her school was ready, willing and able to make her Kindergarten experience exceed the ‘80% of time with non-disabled peers’ definition of Inclusion. It was clear to us that Rose was well on her way to have a very inclusive year in Kindergarten, we just weren’t sure how close to fully included she would be. We were very comforted to know that we wouldn’t be battling over the first 10% of inclusion with Rose, we would be discussing hopefully the last 10% on our way to having Rose fully included.  As her parents our position was that we wanted Rose to be fully included in a regular classroom and we were going challenge any comprise to the best of our still developing advocate abilities.

We are fortunate to live in these times when the tides of education are clearly shifting towards inclusion and we are very fortunate to be working through our few   challenges with a team of capable caring professionals that are willing to engage us in balanced and thoughtful discussions when some of the answers weren’t so obvious.  These are my attempt to record those very interesting discussions.  Both Cheryl and I have been wonderfully impressed by  Rose's team's efforts to include and educate her. We are grateful for all their efforts. I have tried to relay our PPT conversations as accurately as possible. Any mistake or poor reflection on any of the PPT members is unintentional and my fault entirely.  Again, we tackled some difficult issues often with many fuzzy shades of gray and no clear answers and error is mine entirely.  The discussions themselves are an important part of the process.  All of the PPT members have consistently maintained an exceedingly patient, caring and professional manner through all our open-minded discussions.  As much as Cheryl and I have benefited from their shared  professional and personal  experiences I hope they have benefited likewise from our parental perspective. 

Meeting #1  ~  Self-Contained Classroom?                         May 2004

 Ms. D, the school principal, suggested we talk to Ms. S., the Kindergarten teacher for the Resource classroom or the self-contained classroom where traditionally the children with the most severe disabilities are taught along side disabled peers. Initially Cheryl and I hesitated.  Ms. D. told us she knew that we were interested in having Rose placed in a regular classroom but that we should be aware of all the full spectrum of options. We were leaning hard towards inclusion but we were inexperienced and trying to keep an open mind and be willing to learn, an informed choice is the best choice.  

Cheryl and I met for about 20 minutes with Ms. S., in her classroom near the end of one school day. Her students were off at a special so we had her quiet classroom to ourselves. We sat around one of the centers of students’ desks in the Kindergarten size chairs as we listened to Ms. S.  describe what her Resource Room had to offer Rose. It did sound like a full range of academic supports but our concern still settled on the non-diverse make up of the class.

Ms. S. was clearly a wonderful teacher and fully capable of helping Rose learn reading, writing and math but we were concerned that the limited mix of students in the classroom would provide Rose a narrow social experience.  A classroom with ten students with varying degrees of several learning disabilities and several teaching adults is a very unique social situation and not very representative of the real world.  Although we want Rose to know other kids with disabilities we don’t want that to be he dominant social experience any more than we would want that for Erin or Katie or any parent would want for their “regular” or “non-disabled” or  “non-learning disabled” child.  This ideal had come from life for us over the last year.  Rose’s pre-K classroom was a reverse-mainstream model, half the class was “non-disabled” age peers.  And from those peer models came three girls that formed quite a friendship with Rose, One in particular, Hailey, became Rose’s best friend like only four-year-old girls can.  As the year went on Rose was full of more and more stories centered on her friendship with Hailey and we were amazed to listen to a constant stream of; Hailey said this, and Hailey did that, and we played hide ‘n’ seek and we played dress up and on and on.  If one word came to mean ‘inclusion’ for us than that word was ‘Hailey’.  If Hailey or kids like Hailey weren’t to be found in this classroom then Rose wouldn’t be found there either. 

Cheryl and I met the other members of Rose’s PPT to start to discuss what Rose’s Kindergarten experience could be like.  We were going to discuss the specifics of Rose’s IEP (Individualized Education Plan) for the coming school year. Ms. R, Rose’s pre-K teacher and case manager for the last two and a half years; Ms. Sh.  for speech, Ms. L. for OT,  Ms. M., the school psychologist, Ms. B. for PT, Ms. D., school principal and Ms. S , the Kindergarten Resource Room teacher and Rose’s incoming case manager joined us around a table in the Parent’s resource room just down the hall from Rose’s classroom.  We exchanged friendly ‘hello’s’ as we each took a seat the table. This was a very comfortable setting.  We first met most of the team more then two years ago when Rose, Cheryl and I came to visit the school for our first transition meeting from Birth-to-3 to school.  Their welcoming attitude had been a fortunate constant through out every meeting.

Over the last year, Cheryl and I had begun to understand and appreciate the benefits of a fully inclusive education for Rose or for any student.  The night before the meeting we sat down at our kitchen table and worked out our “vision” of how we felt that should apply to Rose in Kindergarten.  We started the PPT meeting with a brief explanation of our desire for Rose to have a fully included school experience and handed out copies of “Our vision for Rose” for our fellow team members to read.  We realize that our roll is not to be Rose’s professional teacher or therapist, we can compliment her school experiences at home but we are only an echo of their capabilities.  Our role is to be Rose’s parents, to see the big picture that stretches back to her birth and forward across this school year and her life to come.  We certainly try to learn and contribute where we can but our primary role is to balance Rose’s near term school interests with her long term life interests.

Our Vision for Rose

Thanks to a wonderful start at Roger Wolcott, Rose thinks of herself as a successful preschooler.  She has a positive attitude and is happy to go to school everyday.  She is already looking forward to moving on to Kindergarten as much as she is looking forward to her next birthday or next Christmas. 

Rose has a strong desire to learn and to grow.  She is very curious and observant about the world around her. When we sometimes inadvertently hold her back she often reminds us how capable she is by making her intentions clear to us she is ready for the next challenge. We hope her self-confidence continues to be nurtured through out her school career. We believe Rose has already accomplished a great deal in her life.  We have high expectations for Rose and we hope everyone on Rose’s team has the same high expectations so she can be the best student, the best person she can be.

Rose thinks of herself first as a student ready to learn and not as somebody going to school to receive special services.  We would like any special services and supports to be integrated into the general classroom so her class mates view her as just one of the kids.   As Rose’s parents, we believe the long term, life benefits of full inclusion far out weigh any perceived short term academic difficulties.  We will try to support working through any difficulties as they come along to keep her fully included.

These are some specific goals we hope to see Rose accomplish in Kindergarten: 

·  A year of full inclusion with all the new relationships and friendships that new classmates have to offer

·  Learn how to talk clearly with other kids her own age so they can play together

·  Beginning writing skills including the ability to write her full name

·  Beginning steps to reading with the long term goal of reading

·  Riding to and from school on the same school bus as her neighborhood friends

·  The physical and social skills necessary to play team sports at her age level (We are looking forward to Rose participating in soccer in the fall and T-ball in the spring.)

 The group thoughtfully read our vision and thanked us.  We had placed what I thought was one unreasonable demand, that Rose learn to write both her first and last name as an attempt at humor.  I questioned the group on the reasonableness of this, thinking this would be an opportunity to have some fun at the expense of our long, polysyllabic, multiple upper case last name.  “Don’t you guys see one unreasonable goal in here?”

They scanned the our short list of goals again, “No?”

“She’s not going to be able to write her last name, is she?”

“Oh, yeah,” came the quick answer.

This was a familiar goal for all kindergarteners.  Their quick concurrence showed no doubt in their belief in Rose’s ability to learn. 

The meeting followed a familiar pattern, each teacher and therapist taking their turn to report on their experiences with Rose, their assessments on her, achieving her IEP goals, their favorite stories and their recommendations for next year.  The stories were great to hear, Ms. B., Rose’s PT told us about one time how Rose had taken over a therapy session.   Always eager to not just be taught but to teach, one day Rose set up an obstacle course for Ms. B. and then carefully and patiently directed her through it, often placing Lori’s foot and positioning her body and encouraging her, “Ok, go here, Ok, now here,….good…”

Ms. B. also had a warning for us.  Once or twice, she had seen Rose exhibiting a strong stubborn refusal to participate in a therapy session.  It had happened rarely, not often enough to be a concern but she just wanted us to be aware.  Cheryl and I shared  that we had sometimes seen a similar reaction at home.  We usually related this ‘shut down’ or ‘meltdown’ as a symptom of fatigue or exhaustion, most often coming at the end of a long busy day during the bed time preparation routine.  But I’ve often thought how amazing it is just how much Rose does do.  I’ve never seen a child follow so many specific instructions, do so many rigorous drills.  It’s a wonder her patience and energy don’t give out more often.   Some credit goes to Ms. B. and the other therapists and teachers and their ability to keep the countless drills interesting but much credit goes to Rose, she’s a hard worker.  And I’ve started to ask myself why is Rose having these stubborn shut downs?  What is she thinking?  What causes me to shut down? How would I behave at her age in similar circumstances? There must be some clues here to try to understand Rose better.  

Ms. Sh. went on to talk about Speech Therapy.  She gave results from a standardized test she had used as an informal gage Rose’s now rapidly expanding speech abilities.  While she seemed to appreciate the technical insight the results afforded her the news that Rose was in the bottom one percentile of children her age was a kick to the stomach.  Objective information is important to appropriately tailor Rose’s therapies but comparing her progress to ‘regular’ kids often feels painfully harsh and jars our parental awareness against the wonderful progress that we know Rose has made.   

As the therapists took turns reporting, sharing stories, assessing Rose’s progress on her IEP goals and offering their recommendations for next years plans Cheryl and I listened and asked how each of the therapists could be delivered in the regular kindergarten classroom we hoped Rose was headed for.  Ms. L., OT, took a second to consider our request and then answered that she thought she’d have no problem working Rose’s 60 minutes of Occupational Therapy into the regular classroom setting.  Ms. B, PT, was unsure how to deliver all of her recommended 90 minutes of physical therapy she could possible do a 30 minutes Gross Motor Skills group with a few of Rose’s ‘typical’ classmates but was unsure how to accomplish the remaining normally one-on-one 60 minutes of PT in a more inclusive setting.  Ms, Sh.., speech, had the same questions.  She was concerned that Rose might be distracted or wouldn’t get enough repetitions if she had to share all her speech therapy time with other kids.  On top of the concerns she would be handing off to a new therapist, Ms. N., and didn’t want to sign somebody up for an unfamiliar, challenging goal. 

Ms. B. and Ms. Sh.. listened patiently to our repeated challenges, “Will she be pulled out for that?”. “Can’t that be done in the classroom?”, “Isn’t there some way?”  We were at in impasse.  They wanted to agree with us but they had a sincere fear for Rose not gaining the maximum benefit of her therapies.  As far as Rose has come, as much as she has accomplished, she still clearly had much work ahead of her.  Ms. D., the school principal, joined the meeting late.  She let us go around and around for a few times until she was certain just what we were stuck on.  She stopped us to take a quick status on the scope of the problem.

“Ok, how much therapy we are taking about here?” she said

“90 minutes, maybe 30 minutes with a gross motor group but that leaves 60 minutes. She still needs a lot of work” Ms. B. said

“90 minutes, too.” Ms. Sh... said

“60 minutes of OT.” Ms. L. said

“But you’re OK working in the classroom?” Ms D. asked

“Yes, that shouldn’t be a problem.”

“And Ms S., what will you be doing?”

“I’m listening for now, trying to see where I fit in but I thing I’ll do 60 minutes a week of observing and consulting”

“Ok, well that’s in the classroom.”

“Ok, so we’re talking about where to do with 60 minutes of PT and 90 minutes of speech.  And we hear what the parents are saying but that’s still a lot of therapy time to squeeze into a week of half day of kindergarten.”

“How many hours in a half-day week?”

Ms. D. did some math in her head, “There’s 13 ¾ hours.  That includes two classroom specials and four hours of therapy.  That’s a tough scheduling problem.  And I’m not really sure it’s fair to the other kids to have them pulled into so many groups with Rose.  That doesn’t leave a lot of time for their regular curriculum work versus the full day program with 32 hours.  Now would mom and dad be open to bringing Rose in before or after the regular school hours for some therapy time?  I know mom is available to drive.  Would that be Okay?”

This was an unusual moment of preparedness for us.  Cheryl and I had actually discussed this very scenario the night before as we went through our pre-PPT meeting cramming drill.

“Yeah, we’re not sure how that would look to Rose if she was still spending a lot of her time in school one-on-one with adults it won’t be like a regular classroom experience.  Just like if she was being pulled out of class for therapy.  She’d know she was being treated differently than the other kids.  And I would think the other kids would notice too.  We want her to be part of the regular classroom, just like any other kid.”

“Well, you know, kids get pulled out of class for all sorts of reasons.  It wouldn’t be that unusual.”

“Really? Regular kids?”

“Sure”

Cheryl and I were caught off guard by that one.

“But we’re getting ahead of ourselves.  We do have the full day kindergarten lottery coming up.  It would be a lot easier to work her therapies into a 32 hour week.  Are you considering the full day program?” Ms. D. said.

“Yeah, we are.  Rose is entered in the lottery.”

Cheryl and I discussed this option as well last night.  Earlier feedback from Ms.R. had increased our confidence that Rose was ready for a full day of school.  Our town currently has a unique kindergarten situation.  Because of limited building space only two full day classes of kindergarten are offered.  Entry is gained through the luck of a lottery selection.

“Ok, well that will be a much easier schedule to work with if Rose gets into full day.  Why don’t we wait and see ho the lottery turns out and go from there.  The lottery’s coming up, May 28^th, we can get together after that and see if we need to work with a full day or ½ day program.  There’s no point in trying to figure out both of them now, Ok?”

“Yeah, sure that sounds fine.”

“Ok, so are we all set here?” Ms. D. took a look around the table.

“Yes, just one more piece of business,” Ms.  R. said, “Rose has her triennial coming up.  We’ll need the parent’s permission for testing.”  She slid a form across the table to Cheryl and me.

“What’s a triennial?”

“Federal law requires students in special education to be tested every 3 years to make sure they still belong in special ed. When’s Rose’s birthday?”

“She’ll be six in February.”

“Ok, so we have some time.”

“Well, what kind of tests?”  Cheryl and I were caught off guard by this but my natural aversion to any of my kids spending extensive amounts of school time taking standardized tests was starting to peak. 

Ms. R. started to point to various lines on the form, “There standardized tests in all the areas Rose is receiving therapy; there’s OT, PT, Speech and some cognitive test as well.”

“Cognitive? Is that an IQ test?” I asked.  I carried several recent memories of distraught conversations with parents of kids with DS as painful lessons learned.  Two families were crushed by very low IQ test result numbers that defied their own very real, very tangible appreciation of their child’s abilities.  Another family fought a determined schools system’s attempt to test their seven-year-old daughter against their wishes. Their school district actually took them to due process to try to enforce an IQ test.  Fortunately the settlement went the parent’s way.  IQ tests in children under 10 years old, with or without an intellectual disability are considered unreliable.  The results are too easily influenced by the child’s attitude and or other disabilities, the relationship with the tester or any other number of mysterious elements.  One of the families I had spoken with found out shortly after receiving a very low test result that their 5 year old was nearly blind with cataracts.  The test results were obviously irrelevant but the parent’s were still emotionally stung from such a number on their child’s permanent record.  It was wasted time, wasted energy and unnecessarily hurt feelings. As well as a number they didn’t need on their child’s permanent record. The fear that their child will be taught to lower expectations is a widely shared one. 

“Yes, I believe it is.  Among other tests there is an IQ test.  Is that right, Ms. M.?”

“Yes, that’s correct.  We look at other things as well but there is an IQ test in there.”  Ms. M., the school physiologist, said.

“Yeah, I think we need to think about this.” I looked at Cheryl and she nodded her agreement.  “We can’t sign this.”

“Well, we have time.  Rose’s birthday isn’t until February.  We have more than 6 months.  It’s getting late today.  Let’s save that for when we get back together.  OK?” Ms. D. said.

“Ok, sure.” Cheryl and I agreed.

Ms. R. pulled her form back and good-naturedly joked, “Ok, I guess we’re not going to get anything done today.… just kidding.”

We hadn’t signed any forms or agreed on an IEP but we had learned a lot in a welcoming, friendly environment.  This was another good PPT meeting for our team.

I’ve been having a recurring dream that I finally told Cheryl about.  Ok, it’s not an actual dream, it’s more like a daydream or a premonition or a bad case of wishful thinking.  Either way, I take the thought as a good sign and I wanted to share the hope with Cheryl on the eve of the kindergarten lottery selections.  The dream takes place in the gym-a-torium (a combination gym and auditorium.  I enjoy making up new words) of Rose’s school.  The gym floor is packed with nervous, excited parents.  The stage, at one end of the large room is crowded with the school staff busy with last minute preparations. Cameras from the local cable community access channel are set up to the side of the stage to beam the event live to homes town-wide.  Cheryl is there with Rose saying hello to countless friends.  The other kids are off somewhere else; Erin is sitting in a high school classroom sharing another sarcastic observation and Katie is busy at the middle school, trying to sift through numerous social invitations for the upcoming weekend, both are oblivious to my daydream.  I am at work, trying to concentrate and failing miserably.  Cheryl and Rose move through the crowd, both are smiling and engaging as only these two very social beings can be, Cheryl seems to know just about everybody in the gym-a-torium and Rose, in fact, does and everybody knows Rose (that is part of both my dream and our reality).  Their short, friendly conversations are repeated again and again as mom and five-year-old daughter make their way, hand in hand to the front of the crowd; so many friends that helped our family so often.  So many people saw something unlooked for but surprisingly positive because of Rose.

“Rose, you’re going into kindergarten?”

“Yes,” comes Rose’s confident answer

“Rose, how old are you?’

“Five!” says Rose and adds a handful of five fingers for emphasis.

“Wow! That can’t be.  That time went by fast.” 

“It seems like she was just born!” 

“It can’t be possible.”

“I know.” Cheryl answers, “It’s hard to believe we’re here.”

The crowd quiets as final preparations are completed.  At center stage is a giant clear drum filled with hundreds of ping pong balls, each carrying the name of a hopeful kindergarten-to-be student.  Michelle Rozek, Rose’s pre-k teacher for the past two years is helping to load the last batch of names.  To one side of the stage, the camera women is making adjustments, to the other side of the stage is a gigantic white board ready to record the results.  Cindi Deshais, the school principal steps to the microphone at the front of the stage and draws the crowd’s attention.

“Test….is this on?…..Test”  Her voice crackles across the crowd as a roadie sitting at a sound board at  the back of the gym-a-torium makes the final PA tweaks.  (There’s almost always, a roadie in my daydreams)

“Ok, can everybody hear me all right?….good…..all right.  I think everybody knows why we are here today.  We’re going to pick names for next year’s two full day kindergarten classes.  Then we’ll pick names for a third class as a contingency.  If for some reason a child that was picked for the two full day classes is unable to attend…, for any reason…, then the next child picked from the third, contingency class will take their place in full day kindergarten….”

Cindi pauses to let the full meaning of her works sink in.

“And, of course, if your child’s name is not picked…then they will for sure be going to…”  The crowd tenses in anticipation.  The roadie, in the middle of a series of constant adjustments, accidentally bumps the volume control ….

"......HALF!!!  DAY!!! KINDERGARTEN!!!!”

The crowd recoils in shock and then a din of confused conversations fills the gym-a-torium.  Cindi looks across the heads of the excited crowd and catches the roadie’s eye.  He shrugs and mouths an exaggerated ‘sorry’, adjusts one slide control on the sound board and the gives her the OK sign, Cindi furrows a brow at him and continues.

“All right, I’m not sure what that was but I think we’re OK now.  I think we’re ready to get started.”  Cindi turns to check the readiness of her staff.

“Are we all set?”

“Yes.”

“Ok,” she turns her attention back to the crowd.  “We are about to select the name of the first kindergartener for full day.”

Cheryl and Rose have worked their way all the way to the front of the crowd, pushed more by the energy around them then any conscience effort on their part.  Cheryl has picked Rose up, resting her on the right hip of her styling new bell bottoms.  They both share on adult eye-level view of the events.  Rose has her arm wrapped around the top of her mom’s shoulders, enjoying their closeness in the middle of the circus-like atmosphere. 

Cindi steps to center stage to stand beside the giant plastic drum.  Michelle closes the access door, reaches high with both hands and starts to turn the crank.  The drum slowly picks up speed until all the names are bouncing around with a crazy random energy.  The rattling sound filled the gym-a-torium as the parents hush, for many a substantial one-year savings in day care hung in the balance, for all students a potential academic boost.  Children looked at their parents trying to understand what was holding their mom’s and dad’s attention so completely. 

Michelle stopped cranking and let the drum slowly spin down to a quiet stop.  The click of the access door latch was clearly heard by all as she released the door and swung it open. (And, of course you know what happened next, after all, this is my daydream). She reached in to find the first ping pong ball.  Michelle searched without sight or thought through the vast number of choices filling the clear drum.  One ball found the palm of her hand and her fingers completely and securely closed around it.  Michelle claimed the ball without hesitation and without ever looking she handed the first name to Cindi.  Then Cindi takes a few steps back to the microphone pulling out her reading glasses as she goes and setting them half way down her nose.

“The first student chosen for full-day kindergarten is……”  as she lifts the ball to read and squints her eyes to focus a mild surprise shows on her face “….Rose McA….”  Before she can finish Rose’s last name the burst of cheers from the crowd drowns out her amplified voice.  There is only one Rose in this class.  The name recognition is instantaneous.  The cheering continues to build.  Those around Cheryl and Rose hug and pat them on the back pushing them through the final steps to the edge of the stage.  Cheryl lifts her child lightly to the front of the stage and Rose dances up to stand next to her teacher and principal. She waves happily to the crowd to even greater cheers.  Cindi catches a quick glance of the roadie on the sound board at the back of the gym-a-torium.  He’s widely pumping both fists in the air and dancing like a crazed football fan. 

The day dream fades with the cheers of the crowd still ringing in my ears.  I think maybe red, white and blue balloons and  confetti were starting to fall from the ceiling. Okay, maybe I’ve read the Polar Express one too many times to the kids.  

Okay, Rose’s name wasn’t picked first.  

Okay, she wasn’t picked at all.  

It looks like it’s going to be ….half day kindergarten!!!    for Rose

Do we allow the school to give Rose an IQ test as part of the triennial evaluation? That’s the question, asked at the last PPT meeting and still not answered.  Ms. M., the school psychologist, asked Cheryl and I to stop in a half an hour before the full PPT follow-up meeting to discuss the question and hopefully determine an answer. 

We’ve heard heart breaking stories through our friends at the Conn. Down Syndrome Congress.  Every report of a child with DS having their IQ tested resulted in a negative impact on their family’s lives. Cheryl and I had discussed these stories when we first heard them and again last night as we prepared ourselves for this next PPT meeting.  Although we would try our best to be respectful and open-minded we were determined to not expose ourselves or Rose to unneeded hardships or burdens.

We met with Ms. M. back in the same Parent Resource Room down the hall from Rose’s pre-K classroom. This time it was just the three of us sitting around one corner of the now very familiar table just down the hall from Rose’s classroom. 

 Ms. M. explained to us her positive feelings regarding the cognitive tests. She made her case for why she wanted to give Rose a full bank of standardized cognitive tests, including an IQ evaluation, as part of Rose’s triennial evaluation; Ms. M. would be giving the tests, she felt that she knew Rose well enough to make the experience comfortable for Rose.  She felt confident that it was appropriate and meaningful and that the tests would be presented to Rose in a friendly, non-threatening manner.  Ms. M. felt that the standardized tests would give an objective assessment as to where Rose stood developmentally relative to her age group.  Also, most importantly, Ms. M. felt that the results would give her and Rose’s teachers and therapists important and useful insights into how Rose’s mind worked and how she could best learn.

We explained that we understood that while some testing is beneficial but we were questioning the need for such an expansive array of tests.  Not that we were against testing we just wanted to be sure that the gains for Rose more than offset the strain on us and the distraction and stress on Rose. This was a special concern for us. Time away from the classroom needs to be carefully considered.  Watching Erin and Katie’s school career progress we’ve seen bigger and bigger chunks of time spent teaching to and taking standardized tests. 

Ms. M. was very gracious and exceedingly patient but it soon became obvious that this was one of those situations where we were going to have to just agree to disagree.  We shared a number of concerns that we didn't think could be resolved; the established inaccuracy of IQ tests for any child under 10 years old, our fear of Rose having an inaccurate and low IQ tagged to her record, and our own hurt feelings dealing with poor test results.  Pat listened patiently and then agree.

“Okay, I guess we are not going to do the IQ portion of the cognitive test….”

“No”

“Okay, well there is another part of the test that evaluates developmentally appropriate behavior.  We do it as in interview with the parents; does she dress herself? Does she help set the table? Does she clean her room?  That kind of assessment. I think you would find it helpful.  It might give you some ideas.”

Cheryl and I looked at each other for a second, “Sure…that would just be in interview with us?”

“Yes, it would take about an hour.  I think you will find it useful.”

“Ok, that sounds fine.”

PPT Meeting #4              Inclusion                         June 4, 2004 2:00pm

The PPT (Planning and Placement Team) gathered around the now very familiar table.  Ms. S., case manager and resource room teacher, Ms. N. for Speech, Ms. L. for Occupational Therapy, Ms. B. for Physical Therapy, and Ms. D., Principal, joined Ms. M., Cheryl and myself.

The therapists had worked out a proposal for Rose’s Inclusive Therapy.  They were going to do their best to meet our request that Rose spend as much time as possible in the regular kindergarten classroom setting.  Ms. D.i lead them through their presentation.

“Ok, just to recap, Ms. L., you’re Ok with working in the classroom?”  Ms. D. asked.

“Yes, sure, it’s not a problem.”

“Ok and that will be for…….”

“Sixty minutes a week.”

“Ok, and speech?”

“I’d like to do 90 minutes a week.” Ms. N. said.

“Classroom or pullout?” Ms. D. asked.

“That would be 60 minutes with a group in the classroom and 30 minutes pulled out for articulation.”

“There’s no way to keep her in the classroom all the time?” we asked.

“You know, um, I did talk to the folks over at JFK and even they are pulling kids out for one-on-one articulating.”  Ms. N. said.

‘Even JFK is pulling kids out’ was a pretty definite statement.  JFK, one of our town’s four elementary schools had under gone a mild inclusion revolution in the last year.  A new principal, Ms. W., had swept into the school last July bringing with her a wealth of successful inclusion practices.  By the start of the school year she had called a PPT meeting for every student with an IEP placement in a self-contained classroom and helped revise them to move all students’ placements to the regular classrooms.  A few months later I sat in a town meeting listening to Ms. W. explain how she was reorganizing the JFK School around inclusion.  Clearly, she had the understanding, experience and principal management skills, as well as the motivation to make inclusion a reality. Here school's new practices represented the local limits of inclusion. We pushed, we listened and we compromised.  In the give and take of asking for the most people were willing and capable of doing this was the practical limit.

“Ok, so mom and dad are Ok with pulling Rose out for articulation for 30 minutes?”  Ms. D. clarified.

Cheryl and I looked at each other, and hesitated.

“I guess I’m Ok with that.  What do you think?”

“Ah, I guess so.”

“Ok, that’s speech,” Ms. D. moved on.

“What about PT? Ms. B.?” Ms. D. asked.

“Well, I’m struggling with this but well I’d like 90 minutes, too.  She does still need a lot of work.  I mean Rose has made a lot of progress. She has definitely come a long way since she first started here but she still has some basic weaknesses that she needs to work on…. I’m not really happy about doing all her PT in the classroom….but….I’ll try.” Ms. B.  was torn, clearly she didn’t like the thought of losing her focused monopoly on Rose’s time.

“Ok, so how are you thinking of doing that?” Ms. D. prompted.

“Well, I was thinking of doing 30 minutes with a gross motor group from the class, and 30 minutes with her gym class but I can’t see taking other kids for more than that.  It’s just a half-day and it doesn’t seem fair to the other kids to pull them out or interrupt the class to do another gross motor group.  It just doesn’t seem fair……”

“Yes, you’re right.” Ms. D. agreed. “It would be a lot of time to take the other kids away from the class.”

“So, I was thinking I would try to do 30 minutes of consulting with the classroom teacher.”

“That sounds fine.”  Cheryl and I agreed.  We were unsure how to juggle the demands Rose’s therapy schedule might place on her other classmates.  Despite our efforts to educate ourselves on Inclusion we are unsure how to juggle the demands Rose’s therapy schedule might place on other kids.  But this was a positive initial suggestion of team teaching.  The 30 minutes of consultation time between Lori and the ‘regular’ teacher would come back to Rose many more times during the rest of the school week.

“So do we know who will be Rose’s teacher yet?”

“Oh, no,” Ms. D. said, “It’s too soon.  We won’t know until the end of the summer.  We have to see who’s going to register for kindergarten and then go through each class and make sure they’re all even for gender, for ethnic group and so on.  And we’re hiring a teacher too.  So we won’t know until just before school starts.”

“Ok, that’s fine.” Cheryl and I were familiar with some of the kindergarten teachers but we resisted the urge to try to guess at which teacher would be best for Rose.  In this regard we weren’t going to make any special requests.  We had confidence based upon our experiences with Erin and Katie.  From kindergarten through all of elementary school both of them had one accomplished teacher after another.  We were sure that who ever was Rose’s kindergarten teacher, they might not be expecting her but they would be able to more than meet her challenge.

The meeting dissolved into numerous side meetings, more stories shared, more possibilities examined.  The meeting was starting to get that wrap-it-up feeling.  

“One other thing.  Let’s schedule a follow-up PPT meeting... maybe six weeks into the school year to check on how we’re doing.  Ok?”  Ms. D. asked.

Everybody quickly agreed.

“So, we’re all set here?”  Ms. D. started to wrap up.

“One more thing, we still have the permission form for the triennial review.  What do you want to do with that?”  Ms. R. asked, still working on her role as Rose’s case manager.

“Yeah, we talked it over with Ms. M. before this meeting.  We’re not going to do the cognitive test but we are doing the adaptive behavior evaluation.”

“OK,” Ms. R. said.  “And how about the other standardized tests in speech and OT and PT?” 

The therapists all shared their desires to have the insights that the standardized tests would give them, and assured us that the impact to Rose’s time would be minimized and low stress.  Again Cheryl and I checked with each other.

“What do you think? Are you Ok with this?”

“Yeah, it sounds Ok.”

“Alright, with me too.”

“Ok then.” Ms. R. made some  minor corrections to the form and slid it across the table to me.

“If we’re all set then just sign here.”

I signed.  We were ready for Kindergarten.