A New School Year Begins

It is the end of the first week back to school and so far everything seems to be going well getting back in to that school routine.

As for that big school decision we had to make regarding where Kayla was going to school - we went with what we felt in our hearts and enrolled her in a private school with an inclusive education program.

At our last IEP meeting someone said to us "...we haven't closed the gap [my thoughts: but more often than not the gap widens for those with an intellectual disability and Kayla met all her IEP goals!] so what we've been doing isn't working and it's time to try something different." That 'something different' met a self-contained classroom for middle school for everything except PE and one other elective. That's what they were offering us.

So we took what was said - time to try something different - and we are trying private school. We are trying a place that has not balked once at having Kayla in the school (since I first observed there almost 3 yrs ago), a place that has let me know Kayla would be welcomed there whenever we were ready to make that move.

6th grade - Jr High - what?!

Kayla has a locker (2, actually) and multiple classes and teachers and is with her peers for the majority of the day. She's only pulled out to resource for 80 minutes and she is included throughout the school because she belongs throughout the school.

The transition has gone well so far in this first week. She has been happy and excited and giggly each day that I pick her up. I think she is quickly learning her way around the school, which is a small campus so that helps! I am excited for this school year and relieved to not be facing it with stress, anxiety and frustration. She's happy because she is at the same school as her best friend!

Lucas has a great teacher and one we were already familiar with so that was nice. He made a friend on "Meet The Teacher Night" that he was very excited about - they hit it off right away. When school started he was happy to find out that he already knew 5 of his classmates. Looking forward to a great year for him as well.

It's still dark enough outside when we catch the bus that the street lights are still on.
Second grade though; already!

His big accomplishment over the summer was to read the Harry Potter series and he met his goal a couple of weeks before school started. Now on to finding new books and series to capture the imagination.

 

Middle School Options

In a previous post I mentioned we were considering options for where Kayla will attend 6th grade. There aren't a whole lot of options.

1. She would go to the school she is zoned for.

2. We could possibly look at another middle school in our district; however, given the statistics of how students with intellectual disabilities are educated here I don't put much hope that another middle school would offer a more inclusive environment. They just might not be washing the football team's uniforms.

3. Home school. This actually kind of terrifies me. I don't have confidence in my ability of being able to home school successfully. I'm afraid I wouldn't be organized or disciplined enough. It's overwhelming to think of being totally responsible for her education; I don't even know where to start with lesson planning and how to get through the plethora of curriculums out there. I think I would have a hard time getting Kayla on board with this idea. She likes school; she is constantly asking if there is 'school tomorrow?' I don't think she would like staying at home.

4. On-line school. While I wouldn't be the one totally responsible for her education and curriculum see above. She would still be at home and the majority of instruction would be over the computer. Not sure that is ideal either.

5. Private school. This is the option we are seriously considering right now. There are scholarships for students with disabilities to attend a participating private school. One of these schools is about 15 minutes from our house - and her best friend attends this school. This school has an Inclusive Education Program. Kayla would be in the resource room for 40 min of reading and 40 min of math. 80 min out of her day - that's it! The rest of the school day she would be with her peers.

As with every decision there are pros and cons and this is true of the private school as well.

- I have always firmly believed that Kayla would go to her neighborhood school with the kids on our street and in some ways it hurts my heart that if we make this decision she won't be at her neighborhood school. (But then again, even if she were at her neighborhood school she probably wouldn't be spending much time with the kids on our street, or typical peers in general, given the schedule the school has proposed.)

- I would have to drive her to school. I know this is a very small "con" and if I'm making a decision on which school is better for Kayla I'm certainly not going to let a 15-20 min commute dictate that decision. The convenience of having the bus pick her up would be something I would miss though! (But then I ask myself - would I even put her on the [regular] middle school bus anyway? The thought frightens me a bit as I've seen the kids on that bus and I've heard the way they talk on that bus. I would be concerned about bullying, but I could ask the kids on our street to watch out for her. If I drove her to the public school it would only be about a 2 minute drive.)

- Uniforms! Again, another 'small' con but it's there. School uniforms can get expensive and Kayla has a closet full of skirts and dresses that she loves to wear. On the 'pro' side it should make getting dressed for school go smoothly because she wouldn't have a choice of what to wear ...and she can always wear her own clothes once she gets home from school.

- The classrooms and school itself are much smaller in size even from the elementary school she just attended.

- My biggest 'con' would be if she goes to this private K-8 school in a much smaller environment how would high school look? I'm already thinking of high school because she would only be in this middle school for 3 years. Would I take her from that small environment to the public high school? That transition seems like it would be overwhelming. Being in the public middle school seems like it would give her more of a smooth transition to high school.

- What do I do about high school? The high school that this private school 'feeds' in to is in another town and county/school district all together. It is about an hour away. I don't think I could make that commute. So she would go to this middle school for 3 years and then all the students branch off to different high schools? (If they go to the public schools for high school they wouldn't all be zoned for the same high school). Thinking about high school is already stressing me out too!

- When I observed at this school 2 years ago when Kayla was in 3rd grade there was one student with Down syndrome. There are now about 7 students with Down syndrome there - they must be doing something right if parents of kids with Down syndrome are enrolling at this school, right?!

Right now our decision is hinging on waiting for word of this scholarship to see how much she would be awarded. We thought we would have heard by now, but we haven't. School is only 3 weeks away (how did that happen!?) and "Facts and Fees" for the public school is next week. I hope we hear something this week on the scholarship so we can move forward one way or the other with our decision. If we end up at the school she is zoned for then we need to prepare for another IEP meeting since we don't agree with the placement from the last meeting.

That's where we stand right now ... just waiting, waiting, waiting.

   

I Failed As An Advocate

Several people have left comments on previous posts relating to Kayla's middle school situation asking if a decision has been made on her placement.

The answer is yes ... and no.

The longer answer is that I failed as an advocate.

When we had our IEP meeting with the middle school team we were hoping it would be a somewhat quick meeting to discuss her placement. We had a previous meeting the middle school team wasn't available for when we discussed Kayla's progress, present level of performance, & suggested goals for next year. I didn't think we were going to go over all that again, but since the middle school team wasn't there for that the meeting started off with that information.

Our kids were with us in the meeting. I brought snacks and other things to keep them busy, but let's face it - after spending all day at school the last thing they wanted to do is sit in a conference room. They were very well-behaved though and quiet throughout the meeting.

By the time we got to what I think of as the nitty-gritty of the meeting, we were about an hour and a half into the meeting. I had a feeling this could become a long discussion.

As the discussion progressed we realized we were up against another brick wall. We realized we were up against all the same arguments and resistance we were met with throughout the elementary years.

When someone from the middle school team was looking over the example of modified science materials Kayla's gen ed teacher brought and said, "What is the benefit ...?" and trailed off speechless with a look of disbelief on her face, I have to admit I mentally checked out. In my mind the meeting was over. I was done.

I was absolutely done with all of it. I was done with the last few years of meetings consisting of eye rolls, sighs, facial expressions, and side whispers. I was done with feeling like we were crazy for suggesting our child could be educated in the general education setting. I was done with the animosity. I was done with the tension. I was done with the negativity.

I knew it would be fruitless to again present so much evidence - so much! - to show best practice, to show research, to show successful inclusion, all for naught.

I was done with trying to explain how this can work. I was done with hoping that one person on her team would finally say "Let's figure out how we can make inclusion successful."

With that comment of "What is the benefit?" I knew what kind of walls we would be facing because we heard a similar comment of "What's the point of even teaching her about the Civil War?" from someone at the district level at a previous IEP meeting. I knew this disbelief of an inclusive education for students with disabilities is from the district level on down to the school level.

We were tired of hearing she didn't belong in a ged ed room because it wasn't beneficial to her - because she would be like "a one-person classroom within the classroom", "in her own bubble in the back of the classroom", that "the aide would become her teacher and she would be getting most of her instruction from the aide instead of the highly qualified special ed teacher." Yes that's how 'inclusion' looked because that's how they did inclusion, because that's the way they made it happen.

The district does not have an inclusion plan in place; they do not regularly, or routinely, make it a practice to educate students with intellectual disabilities in the ged ed setting, unless they are near grade-level. IDEA does not say a student has to be close to grade level or that they need to earn their way in to a ged ed classroom.

How do I know this? Statistics paint the picture.

In 2013 there were a total of 82 students with Mild Intellectual Disability as their primary diagnosis in Elementary (27), Middle (22), and High School (33).

Out of those total 82 students ONE was included in gen ed for 80% or more of the day. (I don't know if that student was elementary, middle, or high.)

Out of those 82 students only 17 were in gen ed 79-40% of their day. I wish I had the breakdown of how many of those 17 were in gen ed near the 79% and how many were included near the 40%.

Out of those 82 students SIXTY were in gen ed for less than 40% of their day. (The remaining 4 were homebound/residential facility).

So 73% of students with mild intellectual disabilities are in gen ed for less than 40% of their day.

That's how inclusive education looks like in this district - virtually non-existent.

So it's not just that Kayla's needs are too great to be met in a ged ed classroom, but it appears the vast majority of students with mild intellectual disability can't be educated in the gen ed classroom for their core academic classes. Because less than 40% of their day really means they're only being included in fine arts, lunch, and recess... and I hardly consider that time to be 'general education' time.

Their placement recommendation would have Kayla fall in the less than 40% of her day category; a more restrictive placement than what she had this year.

Why is the percentage of time included in gen ed so important to me?

In a coincidence of timing I read a blog post after I got home from that meeting about suggestions to parents of children with intellectual disabilities to prepare them for college.

Among the several tips from Daivd L. Westling, Ed.D and Kelly R. Kelley, Ph.D. from the University Participant Program at Western Carolina University in Cullowhee, NC was one a tip on inclusion. In part, the tip said, "Even though it might take extra effort on your part and on the school's and teacher's part, inclusion is the best education for someone who wants to go to college."

We did let the team know that our goal and vision for Kayla is to attend college if she so chooses and she needs to be included to help make that a successful transition.

This is where I failed as an advocate. We probably broke every unwritten rule for parents of what not to do in an IEP meeting.

Because I was done mentally and emotionally, I was done fighting with the district, and in my mind she wouldn't be going to that school next year anyway (more on our options in another post), we caved.

We wanted the meeting to be over. We didn't want to drag it on any longer in a futile effort to maybe get our daughter reluctantly included at a minimum in science and/or social studies.

We should have called an end to the meeting and reconvened at a later date, but we basically said "fine" with their recommended placement because I didn't care anymore and we wanted to get out of the meeting.

I know that was absolutely not the right thing to do in an IEP meeting; believe me I know. I just can't emphasize enough how much I was done with the whole thing.

I reacted irrationally based on emotions - again - not the best way to handle an IEP meeting.

I figured that if other options didn't work out and we had to continue with her going to this school that we would request an IEP before school started, and we would ask Protection and Advocacy to represent Kayla; again. P&A represented Kayla a couple of years ago and while it ended up being a moot point, she initially took the case because they were suggesting a more restrictive placement. We would have another case against the more restrictive setting so we should not have agreed to that IEP and instead just requested another meeting.

Truthfully I was not mentally prepared to have to go through yet another stressful meeting with more of the same.

So I failed as an advocate by saying "fine" to be done with it, because I knew we had other options and I didn't want to discuss this middle school placement anymore.

I know that if she does end up at that middle school that they will have to follow that IEP as written and that was our mistake to leave it like that. We will have to request another meeting and start the process all over again. To prepare for that possibility we shouldn't have agreed to that placement, but we will cross that bridge if we need to.

For now we are hopeful that she will be attending another middle school.

Reflections on Elementary School

Friday was Kayla's last day of 5th grade, her last day of being in elementary school.

My beautiful, spunky, sweet, friendly daughter on her last day of school...and after this summer on to middle school.

I found myself reflecting back on her elementary years. Obviously Kayla was the focus, and the priority, in the decisions we made in every IEP meeting about her placement and what we believed her Least Restrictive Environment to be.

From Day One we've had to fight a school system that routinely starts with placing students with intellectual disabilities in 'programs' instead of starting with the general ed classrooms. The diagnosis leads the placement, not the boundary zones of where they live. I'm not exaggerating this point. From the notes of our first IEP meeting when we attempted to enroll Kayla at her neighborhood school it states, "It was also explained that X school is the school kids with Mild Mental Disabilities attend when their home school is Y school because all types of programs are not housed at each school."

They pre-determine placement based on diagnosis. Yes, I realize that's illegal, but there is a statue of limitation and it's too late to do anything about that now. The notes from that first meeting also state that at her neighborhood school "students typically see the special ed teacher (ie resource teacher) for a brief period of time and are with their regular ed class the majority of the day. Most children receiving this supplemental support have Learning Disabilities or Other Health Impairments. Children typically do not have Mental Disabilities." We heard that to mean: We don't educate children like yours at this school. We dealt with the attitude and realization that she wasn't welcomed, nor wanted, at her neighborhood school.

It was emotionally hard because we had every intention of rightfully registering Kayla at her neighborhood school and that was going to be that. But we left that first meeting so dejected and upset. We had agreed to go visit school X just to appease them, but when they called us later that day to say we could 'try' her neighborhood school and see how it goes we didn't have confidence in them anymore. We felt that if we sent her there she would get lost in the system, they wouldn't really 'try', and she would be set up for failure. So she attend school X - the school they already pre-determined she would attend - for 1st and 2nd grades.

After two years we advocated to change schools because we still felt strongly that she deserved, and had a right, to be at her neighborhood school. We had hoped that as a result of being included, of showing them research, best practice, and resources, that this would not only be successful for Kayla - but secondary to that be successful for the students to come after Kayla. It wasn't our goal to 'open those doors' but we had to open them and we certainly hoped that changes would be made, that it would be easier for the next family because the school team could say, "yes we've done this before and we know how to make it work!"

I'm saddened to feel like we failed at that, we didn't open the door wide enough, we didn't change the culture, and the next family will find themselves reinventing the inclusion wheel.

I wish we could've done more with her time at that school.

What's Best For Kayla

After venting about our IEP meeting and the school's recommended placement for Kayla for middle school, a common refrain I hear is "You know what's best for Kayla."

But I don't feel like I do know what's best for Kayla.

I know what I want for Kayla.

What I want is an inclusive education. What I want is for her to go to a school like this, or this, or this. I want her to go to a school that belongs to the Inclusive Schools Network.  I want her at a school where inclusion is the culture, where inclusion is the belief, where inclusion is embedded in the school life. I want to live in a school district like the Deer Valley Unified School District in AZ, where Michael Remus is the Director of Student Support Services. I want someone like Michael Remus to bring his power point "The Road To Systems Change" to this district and provide them with training.

Example from the power point presentation: Change of Thought Process. - From "Where do I put them?" - To "How do I deliver their services in a more inclusive setting?" That has never been the thought process at our IEP meetings.

I want this experience for her because I know that an inclusive educational experience is not beyond the realm of possibility and that it can be successful and rewarding if it is done correctly.

But when I've sat in IEP meeting after IEP meeting after IEP meeting for five years and hear mostly negative viewpoints on my child with an intellectual disability being educated in the general education classroom it starts to wear on me. It takes its toll emotionally. I start to question myself if I'm doing what's best for my child.

I hear the buzzwords over and over that my child needs "specialized instruction in a small-group setting with a highly-qualified specialized teacher." What I don't hear are suggestions and plans on how to deliver those services in a general education classroom.

Another frequent topic in IEP meetings, and another argument the school has for self-contained placement, is Kayla needs one-on-one support for frequent redirection because she is so easily distracted, can't focus, and is impulsive. Oh is she ever impulsive.

A couple of years ago Kayla was diagnosed with ADHD. We have decided, for now, to not medicate. I wonder what schools do with students who have ADHD and aren't medicated, because I know I'm not the only parent who has chosen to not medicate. They find strategies and ways to deal with the behaviors, don't they? They don't recommend that unmedicated children with ADHD be in self-contained classrooms for their core academics do they?

This ADHD diagnosis is another example of not knowing what's best for Kayla. Maybe medication would be the best thing for Kayla. Maybe it would help her to grasp concepts easier and retain information and learn more skills because she would be able to focus better. Maybe we are holding her back from reaching her 'maximum potential' in the realm of education because she's too easily distracted.

But it worries me. I'd hate for her to have to rely on, and be medicated for years and years on end. And there is a whole process with figuring out the right medication and the right dosage and going through different side effects.

Some kids have lesser ADHD symptoms when they eliminate gluten and/or artificial colors/dyes/ingredients from their diet. Kayla was diagnosed with Celiac Disease 6 years ago - she's been on a gluten-free diet for that long and I never saw any changes in her. I avoid buying products with artificial ingredients (not to say that she doesn't occasionally get it from elsewhere, but for the most part it's not in our diet), and I don't notice any changes in her.

She had a sleep study done, twice, that showed moderate sleep apnea. Symptoms of sleep apnea can mimic ADHD symptoms. She'll have her tonsils (they are large) removed this summer and then a follow-up sleep study. I'm hoping we'll see changes in her attention span and focus after that.

For now we are trying Vayarin - a "non-drug clinical dietary therapy for managing ADHD symptoms..." After a little over a month I haven't seen any drastic changes (although it does say it could take 1-3 months to see any affects because it's not a drug so it won't have an immediate affect on the body.)

So how do I know what's best for Kayla? I feel inadequate even as her parent. I can't go back two years and see how things would have turned out if we would have medicated her right away.

We sat in our end-of-year IEP meeting and were told that after two years they just didn't believe the placement Kayla had was the best placement for her to thrive, and grow, and learn and reach her potential. They don't feel like they did right by her. Even though she made progress and met all the goals on her IEP. We were told "We didn't close the gap so something has to change, the placement needs to be different."

We didn't close the gap.

I know schools receive a report card on how well they are doing with closing the gaps of the sub-groups: minorities, poverty, English-language learners, and students with disabilities.

I'd like to see the statistics on how much this school has closed the gap specifically with the students that are educated in their two self-contained rooms. If they are closing the gap so well with that placement then why are those students still in self-contained rooms for most of their day?

And how are you going to close the gap with students with intellectual disabilities when I've always heard "the gap continues to widen the older they get." Kayla isn't going to catch up to where her same-age peers are. They are going to continue to learn at double, triple, quadruple the pace of what she learns every year. The point is for her to move forward, to make progress.

I don't feel like I know what's best for Kayla because I can't go back and travel the other road to see how that decision would turn out.

I only know what I want for Kayla, I know what's possible with inclusion, I know what research has shown to be best practice.

I know that a study from Bunch and Valeo in 1997 showed that "Special Education placement for students with disabilities has failed to demonstrate substantive advantages over regular classes despite lower teacher-pupil ratio and specialized teaching. Special Education has not proven to be academically and socially stronger than would regular class placement."

That was nearly twenty years ago, and yet, here we still are - placing students in classrooms by their diagnosis and delivering all the core academic subjects in self-contained classrooms.

And I know that Dr Robert Jackson found, "No review could be found comparing segregation and inclusion that came out in favor of segregation in over forty years of research." In over forty years no review came out in favor of segregation.

More from Dr Jackson's report: "...students in segregated education do less well than those who were included, and the longer they were segregated the larger the gap with their included peers." It isn't just a benefit for Kayla to be included as studies have found "...children without disability made significantly greater academic progress in mathematics and reading in inclusive schools."

That's why I may not know what is best for Kayla, but it is what I believe is best for Kayla.

Learning Life Skills at School

My post about the revelation that the middle school Kayla is zoned for sometimes does laundry, and that this laundry includes the football team's uniforms, brought up a broader discussion about learning life skills at school. Specifically students with disabilities in self-contained, special education classrooms, learning life skills.

As expected this topic brings up a lot of strong feelings on both sides. There are parents and educators who support this and there are parents and educators who don't necessarily support this practice. I'm not saying one is right over the other. I'm recognizing we all have differing opinions and that is ok - of course we don't all have to agree on everything.

I think it's clear from my post which side of the fence I fall on.

Let's not forget that my post was referring to my daughter's school and the fact that she's entering sixth grade. I still stand by my opinion that I am not sending her to middle school to have laundry be part of her curriculum. This is the beginning of middle school we are talking about.

Students with disabilities can stay in the public school system a few years past their senior year. If I'm not mistaken those 2-3 years are referred to as transition years, yes? Transitioning to adulthood, to independence, to employment, to continuing their education at college. What do they do during those transition years? My understanding is they are not back in the 9-12th grade classrooms, but in other classrooms or even buildings ... and aren't they learning life skills then?

So we are starting in middle school to segregate these students and start to include specific life skills in their curriculum like cooking and laundry? What will happen in the high school years? More of the same? And the transition years? Again, more of the same?

One of the comments left on that post was an anonymous commenter who said s/he is a "SPED teacher in an all-inclusion middle school classroom working on life skills. My students mainstream into an elective class and PE but are with me for the rest of the day."

I don't really understand that placement at all. How is it an 'all-inclusive' classroom, but the students are 'mainstreamed' into one elective class and PE and are with him/her the rest of the day?

S/He goes on to explain the classroom and their curriculum and what they do. "We have community based instruction once per month. We go shop, have tours, go to breakfast, go bowling and more. There are indeed skills they need to learn, and hands-on within a community environment is wonderful for them."

I still don't get this; I honestly don't. I don't understand the community-based outings in middle school. I understand kids act differently when their parents aren't around, but I can't imagine these kids aren't getting any community-based outings within their natural family lives? Do they not step foot in a store, or restaurant, with their parents? Maybe there are some parents who don't take their kids with disabilities out, but wouldn't it be a small percentage, not the whole class? Doesn't the school offer breakfast? Can't they eat breakfast in the cafeteria instead of making it an outing?

And this classroom also does laundry - their class PE clothes. (Do the rest of the classes in the school do their own PE clothes as well?) S/he said it takes no more than 5 minutes (I wish my laundry only took 5 min!) and that it is done during the teacher's PLC time so not to take away from academic instruction. I'm not sure what PLC time is, but guessing it has something to do with planning time? What other time would teachers have that isn't academic time during the school day? I thought teacher planning time was done when their students are in fine arts and they don't have any students in the classroom during that time?

More from this teacher: "I teach about Current Events in a reading program as well. I teach Time and Money. I teach students to learn/write/type their name, address and phone number..and if they are one of the few that knows this information, they are taught how to fill out job applications. I teach about street signs, measurements, reading menus, shopping, budgets (including checking accounts), and how to dial 911. I look at everything I teach in a day and see how vital this will be for my students in the future."

This teacher is doing a lot with the students and that's great - I'm not knocking all the work they are putting in to educating the students and kuddos to this person for caring so much for the students. But I'm still questioning why some of that is important in middle school - filling out job applications? Yes I had a job or two in middle school - the end of my middle school years. One was babysitting and the other was a cart pusher (cart collector, really) at the commissary. I'm not sure the commissary job had an application - this was before the baggers would bring the groceries out and return the carts themselves. I don't remember learning to fill out an application in middle school in preparation for this job. How many middle schoolers have jobs?

If it is such an important skill to work on, as with all the rest of those skills ... budgeting etc ... why isn't the rest of the student body learning those skills? And if they are learning those same skills then why can't they be learning it together in an inclusive classroom at a time the rest of the general ed students are learning them? Why so much self-contained time to work on life skills?

Last from this teacher in the form of a question: "Would you as a parent rather them learn about Ancient Greece, Ancient China, Silk Road, etc. (social studies), and velocity, force, elements, etc. (science)? With the implementation of common core, with more critical thinking skills (which our ID kiddos struggle with)?"

Yes, as a parent I do want my daughter being exposed to those same curricular topics like Ancient Greece and velocity. Yes, she struggles with more critical thinking skills. No she is not going to learn Ancient Greece in the same way as her typical-developing peers, and she won't learn as much information as they do either. That's why she has an IEP. She doesn't have to learn and master all the same content and standards. That's why there are extended standards, that's why there are modifications. She needs to make progress and move forward. Yes, I want her exposed to those subjects. Will she get anything out of Ancient Greece? I don't know, but will all the rest of the general ed students get something out of it either? Will they remember what they learned about Ancient Greece 20 years from now and use it in their lives?

The National Center and State Collaborative created alternate assessments based on alternate achievement standards for students with the most significant cognitive disabilities. They have a plethora of resources available that show how these ELA and Math standards can be implemented in the general education classroom; particularly with the public wiki page.

Having an inclusive educational placement is not unrealistic. Check out what SWIFT is doing. Look at the CHIME Institute "...a national leader in the development and implementation of a unique model of inclusive education. Inclusive education at CHIME Institute means that children who reflect the demographics of the surrounding region - including children who develop typically, children with special needs, and children who are gifted - learn side-by-side." Last example: The Dr William Henderson Inclusion School in Boston is a fully inclusive elementary school. It has been so successful and there is such a need for expansion that plans are made for a K-12 inclusive school.

Here is a great blog post about "Why It Matters" - a student with Down syndrome, fully included in school and learning about Shakespeare. Yes, it matters.

I recently read an article from Dave Ramsey - How Teens Can Become Millionaires - and what struck me is the statistic that came from a basic financial literacy test given to high school seniors. Less than half correctly answered the questions. Another study found "that over 75% of college students believe they are not ready to make smart financial decisions themselves." So do the general ed students get lessons in these important budgeting and balancing-a-checkbook life skills?

There is a wonderful book from Patrick Schwartz called From Disabilities to Possibilities - The Power of Inclusive Classrooms. He discusses the specific topic of students with disabilities learning life skills "...the best time to teach life skills is when they naturally occur." and gives some examples of life skills and when they should be taught throughout the day, naturally.

From the book: "As students with cognitive challenges or autism get older, they tend more to be diverted into a life-skills-only curriculum. Life-skills-only programs are not necessary nor educationally relevant for anyone. Students who receive these programs are being highly shortchanged. If I were the parent of a son or daughter with autism or a cognitive challenge, I would want academics to be taught within inclusive classroom settings and life skills to be promoted during the natural times they occur. The debate between whether to include a student with autism or cognitive challenges in general education environments or provide them a life-skills-only curriculum in self-contained and community environments could be simply resolved if we teach life skills only when they naturally occur and promote education/curricular goals as well. Life skills need not interfere with inclusion; both can work hand-in-hand. If experiential skills are taught when the student needs to use them, they are naturally embedded throughout the day and do not interfere with general classes or curriculum."

What Does Kayla Think?

After posting my thoughts and feelings about a middle school special education classroom we observed as a possible placement for Kayla, I shared Lucas' thoughts on that little tidbit of doing laundry.

Now I needed to ask Kayla what she thought; I was talking about her, after all.

So I posed the question to Kayla, "When you are in middle school would you like to do laundry in your classroom?"

She was at the table having a snack and shook her head 'no' with a smile on her face that seemed to say, "are you silly? what kind of question is that?"

Me, "So you wouldn't want to do laundry, learn to do laundry, when you're in middle school?"

K, With her mouth closed she made that 'nu huh' kind of sound to indicate "no."

M, "Why not?"

K, "I don't want to."

M, "What do you want to do instead?" A shrug of the shoulders.

M, "Do you want to do your school work in middle school?"

K, "Yes."

M, "Where do you want to do laundry?" Silence from Kayla. "Where do you think you should do laundry?"

K, "One."

M, "One what?"

K, "One hour."

M, "No, not how long will it take to do laundry, but where do you think you do laundry?"

K, "At home!"

A few minutes later I asked again, "So Kayla, when you get to middle school what if your teacher asks about doing the laundry?"

K, "No!"

Me, "What do you want to do in school?"

K, "Keep learning math!"

M, "Whoa, Kayla! High five! That was a good answer!" (Because I truly was not expecting that response from her.)

K, "And science! And social studies!"

(Disclaimer: Yes I know this doesn't mean she would be doing laundry all day, every day. I realize she would still be doing school work. I realize it would be a small part of the school day. I don't even know how often the students do this laundry as I admitted in my post. But I still maintain my opinion that even doing the football team's laundry one time out of the school year is one time - that is not why I'm sending my child to school.)

 

The Words of a 7 Year Old: "Sad for Kayla"

I wanted to see what a typical child thought about the whole issue of washing uniforms in middle school. 

So I presented the scenario to my son.

I asked him, "Lucas, when you get to middle school what would you think if you were told that your class and only your class was going to learn to do laundry? And to learn to do this laundry only your class would be washing the football team's uniforms."

I stressed that it was only his class because I didn't want the hypothetical question to be a generalization of doing laundry in middle school. I didn't want to present it as, "hey how would you feel if you learned to do laundry when you were in middle school?"

I stressed this was only his class so he would understand the specifics of it - that it is indeed only one class washing the uniforms. He had no prior knowledge of the situation or my feelings about it.

He replied, "Sad."

Me, "Why would you think it was sad?"

L, "Well just my class would be washing the uniforms?"

Me, "Yes, just your class, none of the other classes in the rest of the school would be washing the uniforms. How do you think that would make you feel?"

L, "It would make me feel kinda mad, because why should only we have to do that? And the uniforms are probably all sweaty!"

M, "How would you feel if I told you that the classroom they want Kayla to go to when she goes to middle school does that?"

He stared at me with wide eyes and his mouth hanging open; speechless.

Finally he says, "Seriously?!"

Me, "Yeah. There are only students with disabilities in that classroom; and only their classroom does that."

L, "Seriously?"

Me, "Yes. How does that make you feel?"

L, "Sad for Kayla."

  

They Wash The Football Team's Uniforms

So we observed the self-contained classroom at the middle school that Kayla is zoned for.

We figured out pretty quickly that this was most likely the placement the school was going to recommend for Kayla in 6th grade.

We learned that the students spend the majority of their day in the classroom because they're getting all of their academic instruction in the 5 core academic subjects in this classroom. (Kayla's current placement is being in the general education setting 79-40% of her day [I don't have on-hand her actual percentage of time] and I dislike that range because it's such a broad range between being almost at 80% included to 40% included. The recommended middle school placement would have her in general education settings less than 40% of her day.)

We learned it's possible for a student to 'move up, or out' to another classroom setting based on how well they are preforming academically.

We learned that the students aren't assigned lockers like the rest of the school population.

We also learned a few other things during our observation tour.

This classroom is in what used to be the Home Ec room. The school doesn't offer Home Ec anymore so the self-contained classroom moved in to this room. I don't know when Home Ec went away and I don't know what classroom they were using before and I don't know know why they moved in to the old Home Ec room.

What I do know is because it was a Home Ec room it still has refrigerators and stoves and sinks.

We learned that sometimes, maybe as part of a Social Studies or Math lesson, the students will learn to cook.

I wasn't completely thrilled at the idea, but not totally against it either. After all, I remember having Home Ec in middle school. I remember learning to thread a needle and complete sewing projects (a stuffed pink pig with a button for the eye!). I remember some cooking lessons, too.

The difference is that was something the whole school took as a class. The difference is the rest of the student body no longer has Home Ec as a class. If it was something the rest of the middle school students were learning to do I would be somewhat ok with it.

But then there was something else.

At some point a washer and dryer was acquired for this classroom.

And as part of that whole "life skills", "being independent", "real life experience" (I'm not really sure what the whole justification is) ...

We learned that "...sometimes they wash the football team's uniforms. They learn how to measure and do laundry, and the football team gets clean uniforms. It's a win-win!"

This was reiterated to us during the IEP meeting in a description of the things they are doing in the classroom and that the students are learning to use the washer and dryer and "they wash the football team's uniforms and it's ... great!"

Let that sink in for a moment.

Sometimes they wash the football team's uniforms.

Why is this even a thing? Why is this ok? Why is this acceptable? How is this appropriate?

I don't know how often they wash the uniforms. This does not mean this is the only thing they are learning in the classroom. This doesn't mean they aren't doing academics either.

I felt shocked, saddened, disappointed, disbelief, speechless, frustrated, anger. I felt like having these students wash the uniforms is demeaning; as if they are less-than.

I've heard other parents tell stories of high school students in special education classrooms collecting trash or cleaning up the cafeteria after lunch and I couldn't believe that was allowed.

Then I found out something like this is happening right at the school where my daughter is supposed to go, at the middle school level ... that they are washing the football team's uniforms.

Students receiving special education services should not be doing ... chores ... that the rest of the student body does not have to partake in. Why are they singled out? It continues to create a divide; an "us" vs "them" mentality at the school.

What do those football players think of those students with disabilities who are washing their uniforms? How does that create an even peer relationship?

Why is doing laundry even so important at the middle school level? And if they do feel this is an important skill to have at this grade level then it is also an important skill for the rest of the students to have.

Why not give the players on the football team those same important, real-life, independent, life-skills experiences like doing laundry? Why not teach the football players to wash their own uniforms? They are, after all, the ones who are dirtying up those uniforms.

The thing is this: I am not sending my child to middle school to learn to do laundry. Especially not the laundry of the football team. It doesn't matter if it happens once a week, once a month, once a quarter, or once a year. One time is one time too many. Even one time is not acceptable.

We will teach our daughter to do laundry at home ... we send her to school for the same reason we send our son (and the same reason any parent sends their child) to school - to get an education.

Until students without disabilities are learning to do laundry at school, I don't find it appropriate for my child to learn to do laundry at school.

Especially not in middle school.

Middle School Gets More Restrictive

I've been hiding my head in the sand at the fact that Kayla will be going to middle school next year.

We went to the "Rising 6th Graders" open house night to get a tour of the school so there is no more denying that she is, indeed, a "rising 6th grader".

Then we had a personalized tour set up for us as parents of a child receiving special education services. We met with the school psychologist who brought us to observe a classroom: The "ID-Mild (Intellectual Disability)" classroom.

That's all we observed. We weren't taken to observe any of the other 6th grade classrooms; not the general ed classrooms, resource room, cross-cateogry (cross-cat) resource room, or the Read 180 and Math 180 rooms.

Could we have asked to observe other classrooms? I'm sure we could have, but it was obvious that by only bringing us to observe that particular classroom where they expected Kayla's placement to be.

It seems to be a 'standard operating procedure' that students with intellectual disabilities are educated in self-contained special-education classrooms. Never mind that the Individuals with Disabilities Education Act states that a general education classroom in the neighborhood school should be the first placement considered; it has never seemed to be a consideration discussed in Kayla's IEP meeting. In our experience it seems the standard is to start with the self-contained classroom and work backward letting her have some inclusion time.

The students in this classroom receive all of their academic instruction in the 5 core classes (Reading, Writing, Math, Social Studies, and Science) in this classroom. Unless a student shows more mastery, or a stronger skill in one of those areas ... then they may get to go to another classroom. In other words they can earn their way out of the classroom by their academic performance. The time of day we were observing the classroom they were working on reading. We were told that there was another student out of the classroom at that time because that person is doing so much better in reading, it is their strong subject. I don't remember if this student went to the cross-cat room, a resource room, or the general education room for their reading instruction time, but I think it was cross-cat. Regardless ... can you imagine if all typical students were placed this way? If they had to earn their way in to the classroom by showing proficiency or did well in one subject over the other?

We were told they get plenty of opportunity for inclusion and to be amongst their typically-developing peers. Yet their inclusion time is during two related arts classes, lunch (which we later found out that classrooms really all sit together as a classroom so they would still be with their self-contained class) and courtyard time (20 minutes).

One of the justifications for having these students spend the majority of their day in this one classroom is because their goal is to teach them independence, how to work independently and develop those skills so they can be prepared to transition to high school. Prepare them to be independent in a self-contained classroom so they can be prepared for what exactly in high school? The same type of placement?

The students in this classroom don't even get lockers assigned to them like the rest of the general education students. Why? Well for one because they stay in that classroom, so why bother having a locker to go to when you need to switch out your books for the next class? All their books and folders and backpacks just stay in the classroom.

Also because organizational skills like going to your locker and putting away one book and folder for one class and making sure you have the right book, folder, notebook, papers etc for the next subject is too much for these students. It's too hard and confusing. That's what was explained to us on why they don't have lockers.

Oh! But they DO go out to the hall and mingle and hang around during class changes like everyone else! They just don't go to a locker and they go right back to the same classroom. But consolation prize for having inclusion time in the hallway during classroom changes?

How about teaching them those organizational skills? How about assigning them the lockers that are right outside their classroom door? How about the teacher reminding them to take their English books/folders to their lockers to be put away and take out their Science books? How about color coding their textbook covers to match with a color-coded schedule so they can see that Science is next and highlighted green, so that means take the green-colored textbook out of the locker?

My guess as to what the school team was going to recommend for placement was confirmed when I realized there would not be a general education teacher from the middle school attending the IEP meeting. Why should they bother having a ged ed teacher there when they weren't planning on recommending any time in the general education classroom? The two middle school teachers in attendance were the special education teacher of the classroom we observed and the special education teacher of the cross-cat classroom.

Their recommendation was exactly what we observed: for Kayla to be in the self-contained classroom for all 5 of the core academic classes and the standard inclusion time of related arts, lunch, courtyard.

IDEA also states that students with disabilities should be educated in the general education classroom to the maximum extent appropriate. Of course saying 'maximum extent' leaves what that means up to wide interpretation. There is no clear definition of what maximum time means, because it is an Individualized Education Program and the maximum time is defined at each IEP meeting.

But how is receiving all academic instruction (I am not counting the related arts time, I'm talking specifically about core academic classes) the maximum extent appropriate? It's NO time at all.

Kayla's current placement this year is receiving all of her ELA (English Language Arts) time in the cross-cat resource room. To me that isn't ideal, but she is using the System 44 reading program and for students on an IEP that's where they receive all their ELA instruction. The difference with the cross-cat room is it isn't typically where students with intellectual disabilities receive instruction. It is for students from the gen ed classrooms who have learning/emotional/behavior/educational disabilities to receive direct instruction or extra help. Kayla also goes there for 40 min of math. She is with the gen ed room for the rest of her time with modifications made to the science/social studies curriculum. She is with her ged ed class for 45 min of math but that is another topic.

Kayla met all but one of her IEP goals this year. She is not failing social studies or science (again, disclaimer that she does receive a modified curriculum in those areas). She is making progress. Yet they recommend a more restrictive placement for middle school. They don't even think it's appropriate for her to go to ged ed for social studies/science.

I'm reaching the point where I don't even want to fight anymore. Despite the fact that research has shown, over and over again, that students with disabilities perform better and make better academic gains in math and reading when included in general education classrooms. In Inclusion or Segregation for Children with an Intellectual Impairment: What Does The Research Say? Dr Robert Jackson said "...no review could be found comparing segregation and inclusion that came out in favor of segregation in over forty years of reserach." (The link above is for a pretty lengthly pdf document, but so worth the read for the knowledge and information on all the research that has been done over the years. It is very eye-opening. How could I not want an inclusive educational experience for Kayla?

We could fight that they are proposing a more restrictive placement even though she has made progress and met goals in her current placement. We might even win that battle and maintain the placement she has now.

But what is the point if the attitude isn't there? What is the point if the belief in an inclusive education isn't there? How is it beneficial if not one person truly believes in an inclusive academic setting with appropriate supports and modifications? How can it be successful if no one wants her in a ged ed classroom?

Self-Contained Classrooms

I realize that for some students a self-contained classroom is the better environment for them to learn in rather than a typical general education classroom. The general ed classrooms can be overcrowded with 20+ students while a self-contained classroom probably has less than 15 students. The faster pace of a general ed classroom can be overwhelming for students who need a slower pace. I know that IDEA states that schools have to offer a continuum of services and that includes self-contained classrooms.

But here are my issues with self-contained rooms based on the experiences and observations of these settings in two schools.

*Please remember these are just details we've either experienced or observed. I am not painting a broad picture of all self-contained classrooms. If your child hasn't entered the school system yet I am not saying that your experience will be like this. Parents need to observe all the classrooms that are possible placements for their child and make decisions on what is best for each individual child. Some self-contained rooms are the best placements for some children and there is nothing wrong with that if your child is thriving and you are happy with it. This blog post is about my own frustration with self-contained rooms in 2 schools.*

How is being in a self-contained (for the rest of this blog post referred to as SC) room any different from the general ed classrooms? They are still a group of students belonging to a classroom, right? They are in a classroom with the same students and teacher every day just like all the other classrooms right? Sort of. But in subtle ways they aren't 'part' of the general feeling of belonging with your grade-level same-age peers.

Here are my experiences and observations:

School A (where Kayla attended 1st and 2nd grade)

- While all of the students in the self-contained room are on an IEP (the I stands for Individualized, but I don't think there is much individualization to their education plans.) The 'standard' (what seems like the standard for this district) for mainstreaming (and that's what this set-up is - mainstreaming - not true inclusion) is the students in the self-contained room all go as a group to the same gen ed classroom for their mainstreaming time. And the amount of time for all those students is exactly the same. They get to join their typical peers for Lunch, Recess, Fine Arts, Social Studies and Science. If all 4 students went to the same gen ed classroom, where was the inclusion time for the rest of the 2nd grade classrooms?

- Meet the Teacher night for the gen ed teacher: the students' names were on all the desks except the 4 students who would be joining the classroom from the SC room. The teacher was just going to put those students at a table. (Thankfully the teacher realized that wouldn't work and found desks for them, but that didn't help on Meet the Teacher night when your child sees all the names on the desks but their own). Later in the school year all the students' names were on the outside of the door - except guess which 4 students didn't have their name on the door.

- During the 2nd grade field trip the students from the SC room were kept in a group with the aide from their classroom. There was no mingling them amongst the other chaperons and typical peers, or even adding a typical child or two to their group to foster some peer relationships. The only reason Kayla wasn't with them and was with a girl from the ged ed room was because I was a chaperon and I had the 2 girls in my 'group'.

- Kayla brought home a lot of 'busy work.' Worksheets on material that she had mastered but was still doing the same thing over and over. Worksheets that had identifying colors and shapes even though she was in 2nd grade and was well past already knowing that information.

- Kayla was in the SC room for 1st and 2nd grade yet she never worked on spelling or had spelling tests. She had minimal homework. At most it consisted of 5 sight word cards a week to learn. But she didn't have to do anything else with those cards ... not learning to spell the words, not even having to write the words 3x or something like that. She wasn't doing anything on the curriculum that typical 1st and 2nd graders were doing. When I asked when the class was going to work on spelling I was told they did that when they went to the other SC room (which was for 3rd-5th graders). Then when we wanted her in a 3rd grade gen ed classroom they complained how far behind she was and couldn't spell basic words ... well gee, I wonder why!

- This SC room for 1st and 2nd graders was not even in the cluster of the 1st and 2nd grade hallway. They were 3 hallways away. So how could they, or their typical peers, feel like they 'belong' with their peers if they can't even be in a classroom amongst the rest of the 1st and 2nd graders? This set up also fostered a lot of dependence because the students all traveled together with the classroom aide down the 3 hallways to their gen ed room. It wasn't like they could just go by themselves across the hall. (Near the end of the 2nd grade year I did ask for Kayla to go to the gen ed room for ELA and she went for 30 min during their phonics time and was able to go by herself.)

School B (Where Kayla was for 3rd grade last year and will be in 4th grade this year)

Kayla is not in the SC room in this school ... but I observed this classroom 2x because the school team wanted me to consider this placement for Kayla.

- This room is for K-5th grade. Yes, Kindergartners through 5th graders. Wrap your head around that for a minute. You know how little Kindergartners are and how big 5th graders are? In the same classroom. Last year there weren't any kids in K, but there was a 1st grader and there were 5th graders.

- Their mainstreaming time was split (there were 10-11 students in the classroom) between two first grade gen ed classrooms. First Grade. Every student in that SC classroom went to a first grade classroom. Even those big, tall, 5th grade boys. How is that appropriate?


- So, potentially, they could be in this same SC classroom their whole elementary school years starting with Kindergarten and remaining in the same class year after year through 5th grade. That's 6 years of the same classroom. And, some students, if they aren't 11 by a cut-off date, can stay an extra year in elementary school. Potential to be in the same SC room for 7 years.

- How is putting the 3rd, 4th, and 5th grade students in a 1st grade class for all their mainstreaming time teaching them how to interact and be with their same-age peers? Where is the interaction with their same-age peers?

- The kids in this class all seemed to be about the same with their verbal skills. Very minimal and saying 1 or 2 word sentences. There are 3 or 4 adults in the classroom. The majority of their time is spent with the adults and with each other (how much actual conversation can they accomplish with typical peers in a noisy lunchroom, or at recess when everyone is running around?) So all their conversational modeling is coming from each other and the adults in the classroom. How is that helping to facilitate and foster better communication skills with their peers?

- If Kayla was in that classroom she wouldn't have any typical peers to serve as role models to help with speech and language skills. Her verbal skills are a little bit above what I observed.

- Their classroom is located on the corner of where the K classrooms are. Again ... not anywhere near, or in the middle of, a group of gen ed classes. Once again that SC room and 2 others are clustered together at the end of a hallway. Those older students aren't anywhere near their same age peers.

- There was a fundraiser the school did with students running laps. The grade levels were broken up to run at different times. I went to watch Kayla. I didn't see any of the students from the SC class in with any of their grade-level peers. As I left the school I saw their class coming in the front doors.

- The schedule for field day was emailed out and I didn't see the SC classes on the schedules going out about field day. Then field day was rescheduled due to rain. This time the new schedule did list the SC classes, and their time slot was with the Kindergarten classes. The SC class didn't even have any Kindergartners in their class! Again, how is that appropriate to have their field day with the Kindergartners? How does that look? At the minimum why couldn't they have split up and joined their 1st grade mainstreaming class?

- And again ... why are they not even being mainstreamed with their same-age peers?

- My last issue is with the names they give these classrooms. They put students with intellectual disabilities in one of 3 'types' of classrooms. They are self-contained but they refer to them by EMD, TMD, and PMD. Educable/Trainable/Profound Mentally Delayed. Educable and Trainable were terms that should've went out years ago. Supposedly they don't officially call them that anymore. I was told they are "Mild/Moderate/Severe" yet habits are hard to break and they are still referred to as the EMD/TMD/PMD rooms. How do you have a classroom of students that you refer to as 'trainable'? You train pets. And shouldn't all kids, in general, be considered educable? I'm tired of the labels. The gen ed classrooms throughout both the schools we've been with are identified by the grade number and a letter. 1st grade rooms are 1A-1G, 2A-2H and so on (depending on how many classrooms.) Yet at the school we are in now, on the school website, it lists the teacher of the self-contained room as "TMD". It's on the official school website. So much for changing the language.

- This is why I've been advocating so hard for Kayla to be in ged ed classes with resource room support. Not to mention that numerous research over 40 years shows kids with Down syndrome do better in math and English Language Arts when they are educated with same-age peers in the gen ed classroom.