Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #25: Include me

The law that requires a child to be taught in the Least Restrictive Environment (LRE) is part of IDEA, the Individuals with Disabilities Education Improvement Act, that was passed in 1975 and then reauthorized in 2004.

This does not mean that every child will automatically be placed in a “normal” classroom.  It means that students are placed in the least restrictive classroom in which their needs can be met.  Sometimes these placements are in a general education classroom without any supports.  Sometimes students need a one-on-one aide or paraprofessional.  Sometimes they have some instruction in the general education classroom and have some time pulled out to work in a special education setting.  But school districts need to provide a continuum of services to meet the needs of all learners.

IDEA also stipulates that a child cannot be placed into a more restrictive or segregated classroom based on their diagnosis alone.  All too often, school districts will tell parents that this classroom is where our students with Down syndrome go or that classroom is for students with vision impairments.

That’s a big no-no in the eyes of the law.  Students must be placed based upon their own unique set of needs and abilities.

While schools may try it, they are also prohibited from refusing to provide services based on cost.  In a nutshell, this means that if the appropriate LRE for your child is in a general education classroom with an aide, they cannot deny that placement by saying that they can’t afford to hire an aide.  

It’s also important to remind yourself, your schools, and your community as a whole that when done correctly, inclusive education is more cost effective than educating students in a segregated setting. 

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Advocacy #22: Inclusion Part 2

Students in the United States are guaranteed, by law, access to a free appropriate public education (FAPE) in the least restrictive environment (LRE).

Here’s a handy infographic that describes the definition of FAPE:

Graphic of At a Glance: Free and appropriate public education (FAPE)

School inclusion is the practice of educating students with disabilities alongside their typical peers.  They have access to the general curriculum (the stuff that all the kids learn) and it is modified to suit their learning needs and challenges.

Inclusion is not the same as mainstreaming.  Mainstreaming involves teaching students with special needs in the same classroom, but with a different curriculum altogether.  It is not the same as providing access to the general education curriculum (the stuff that all kids learn). For example, in an inclusive environment, all of the students might write a report about the water cycle. Typical students would write a three-page paper to describe what that is and why it is important. A student with special needs who struggled with paragraph structure might write a 5-paragraph essay of one page over the same topic. Both learn about the water cycle. Both write a paper. In a mainstream environment, the typical class is learning about the water cycle. Typical kids still write the three-page paper, but the student with special needs is tasked with coloring pictures of the water cycle. He is not learning about the water cycle, he is not accessing the general curriculum, he’s working on a totally different assignment while physically present in the classroom.

Not cool.

Research has shown time and time and time and time and time again that school inclusion has tremendous benefits for all students, whether they have special needs or not.

From Wrightslaw.com, a leading website for information on inclusion and the law:

There is a strong research base to support the education of children with disabilities alongside their non-disabled peers. Although separate classes, with lower student to teacher ratios, controlled environments, and specially trained staff would seem to offer benefits to a child with a disability, research fails to demonstrate the effectiveness of such programs (Lipsky, 1997; Sailor, 2003).

There is mounting evidence that, other than a smaller class size, “there is little that is special about the special education system,” and that the negative effects of separating children with disabilities from their peers far outweigh any benefit to smaller classes (Audette & Algozzine, 1997).

Students with disabilities in inclusive classrooms show academic gains in a number of areas, including improved performance on standardized tests, mastery of IEP goals, grades, on-task behavior and motivation to learn (National Center for Education Restructuring and Inclusion, 1995).

Moreover, placement in inclusive classrooms does not interfere with the academic performance of students without disabilities with respect to the amount of allocated time and engaged instructional time, the rate of interruption to planned activities and students’ achievement on test scores and report card grades (York, Vandercook, MacDonald, Heise-Neff, and Caughey, 1992).

The types of instructional strategies found in inclusive classrooms, including peer tutoring, cooperative learning groups, and differentiated instruction, have been shown to be beneficial to all learners. For example, Slavin, Madden, & Leavy (1984) found that math scores for students with and without disabilities increased by nearly half a grade level as a result of working in cooperative learning groups.

– See more at: http://www.wrightslaw.com/info/lre.incls.rsrch.whitbread.htm#sthash.Rl3VXxil.dpuf

Inclusive education, while widely accepted as the best way to educate all students, is not always common practice… especially not in the upper grades.

We’re on a mission to change that in our world.

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Advocacy #21: Inclusion Part 1

The first in a series on inclusion and what that means to us….

Because everyone can add to the richness of community.

Because everyone has value.

Because no one likes to be excluded.

Because no one likes to be told they can’t.

Because it’s good for everyone.

EVERYONE.

Because there is always a way.

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Advocacy #11: LISTEN!!!

You probably think I’m cheating a little bit at my 31 for 21 Challenge when I post videos, but there is a lot to be learned from the voices and experiences of others. You might not seek out these types of videos like I do.  I hope you watch them, most especially the one below.

It is 17 minutes long.  I know, it’s extensive.  I promise, it’s worth every second.  Because getting the message of this video means “getting” my family’s perspective.  This is what we are about.  This is what we are advocating for.

Is it is the same as every other family?  No, most definitely not.  But at home, in school, and in life, this is the cornerstone about our approach to Down syndrome.  I hope you will take some time out to understand us.

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Advocacy #7: Listen

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Rattled.

The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace.  He doesn’t know.  He cannot know.

“We love it!” I exclaimed, probably a little too brightly.  Tessa burst into tears.  He was quite clearly baffled and muttered something about how she’ll never be….  and then he stopped.  I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand:  Why is it acceptable to put any child into a box marked undesirable?  Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life?  And why the hell does it matter if she ends up smart or high-functioning or independent??  She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues.  Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love.  My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am.  I pray that we opened his mind and heart just a little bit.  I pray that Ellie remembers her mom’s response more than his words to me.  And I pray that somehow, we have made a little tiny difference.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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Lesson #13: Advocacy never sleeps

This is part of the 31 for 21 Blog Challenge!

ad·vo·ca·cy

noun \ˈad-və-kə-sē\

the act or process of supporting a cause or proposal : the act or process of advocating something

There are a lot of days that I wake up with a take-charge attitude toward advocacy.  Most, even.  When connected to a community who advocates for special needs, there’s always a cause to fight for.  Some magazine posts an insensitive article about birth defects.  A television program uses the R word inappropriately.  Some crazy scientist tells me that my child is suffering.  Yes, every day, without fail, there is a need for vocal campaigning.  Every.  Day.

Trust me, I’m all about fighting the good fight.  I’ve never been one to shy away from (politely) sharing my feelings.  If someone posts a link to a news story that isn’t supportive or encouraging, I do my research and then I’ll call someone out on it.  I champion the causes of acceptance, love, understanding, empathy, and inclusion through words and actions.  I am all for preaching to the choir, preaching at the devil, even preaching to a brick wall if no one else will listen.

Most days.

Some days (not many, but a few) I’m tired.  I can’t fight every battle.  I do think it’s incredibly frustrating that something happened, but today, I cannot fight.  Because even if advocacy doesn’t sleep, sometimes I must.  Without a break, it’s an effort that isn’t sustainable.

Thankfully, there is a huge network of moms out there ready to advocate for inclusion and acceptance when I can’t.  Not just moms, actually.  A community of supporters stand in the wings, picking up when I’m tired.  I do the same for them.  Together, united behind a worthy cause, our advocacy never sleeps.

True.

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The Back Row

My goodness, I love graduation. My squirrelly little freshmen who can’t sit still in Spanish One morph into goofy sophomores and sarcastic juniors and then suddenly they are walking back to their folding chair on the football field, diploma in hand, beaming like they won the lottery.

Every kid smiles at graduation. Every. Single. One. It’s lovely.

My charges were a group of 13 students, 10 boys and three girls (the kind of male/female ratio that I seem to be handed very frequently these days). We were the second-to-last row. I knew most of them pretty well. As we sat in the line-up room, they were sassy, but fun.

“Why can’t I have my cell phone? I want a selfie with the principal.”

“What if I trip on purpose? What if we all do? That’d be awesome.”

“Is this gonna take forever? I’m so done with this school.”

By the end, they were jubilant yet reserved. Sad it was over, thrilled at their accomplishment.

I love graduation.

Still, the ceremony tugged at my heartstrings more than usual this year. Because here I sat, in the second-to-last row, and quietly observed the back row… the row where our “Vocational Ed” Special Needs students were grouped together with their aides. The row where every child in the graduating class with Down syndrome was seated.

Not my child.

Most schools don’t seem to do Inclusion well… especially not high schools. We aren’t near school-age yet with Tessa and yet I already feel like I’m suiting up for battle with an education system that I am a part of. At the same time, I’m really annoyed. Annoyed that I have to suit up. Annoyed that in order for Tessa to have the same access to education that Ellie will get with no question, I have to fight people. That’s obnoxious.

Thankfully, I’ve never minded being a trailblazer for things I believe in. I’ve got some years to build up my armor and I’ll be ready.

Nobody puts my baby in a corner… or a back row… unless, of course, her alphabetical seat assignment puts her there.

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