Yo soy La Lay

adventures in family, faith, and Down syndrome

Oct 27

Advocacy #27: Include me outside of school, too

by Maggie

I need to be totally honest about something here and I feel a little like this is blasphemous in the Down syndrome community and I fear that maybe I’m going to be excommunicated or something, but in my world, it’s important.

I am not a huge fan of what I have observed about programming through Gigi’s Playhouse.

I will readily admit that I have never once stepped foot in a Gigi’s.  I have never taken part in any of their programming by purposeful choice.  Many, even most of the moms in the Down syndrome community go there often and love Gigi’s.  As a matter of fact, when Tessa’s diagnosis first became “public,” we had numerous people reach out to us and tell us how wonderful Gigi’s is for their friend, niece, cousins’s kid, neighbor, etc.  But it didn’t sit right with me.

I don’t know if this is a character flaw in me or some deep-seated unwillingness to accept that Tessa’s life may look very different than others, but when people told me that I should take her to Gigi’s to play with other kids like her, it got me a little angry.  I was not, and still am not, willing to believe that she needs to go to a special place, just for kids like her, to find friends and support.

This is what Gigi’s has signified for me.

I know that for a lot of families, it is vital and a great place to find comfort and information.  I’m glad that they love it.  I wouldn’t take it away from them because all families work differently and that is great.  But to me, inclusion means taking my child to play groups with all kinds of peers through park district and community programs.  And inclusion means that we don’t participate in walks just for people with Down syndrome, but we walk in big community races and wear our group shirts and infiltrate the typical community.  I believe in just being out there, in the big old world, helping my kiddo navigate her environment, teaching others to accept her through her participation in her own little way.  It is good for her and it is good for those around her.

May she do as she wishes, may her friends be her friends, and her loves be her loves, because she is Tessa and simply that.

That is what inclusion means to us.

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Oct 26

Advocacy #26: Include me – support the teachers

by Maggie

As a teacher, the first thing that I want you to know is that inclusion is not easy.

Worthy of the effort, yes, but not easy.

A high priority for students and communities, absolutely.  But it is not easy.

One of the biggest struggles that teachers face is the differentiate (modify) instruction for a variety of students.  Regardless of how many children have diagnosed special needs, when you have thirty students in a classroom and you have to meet the needs of every one of them, it can get dicey.  When you think about the upper grades, where teachers have over 100 students throughout the day, it’s even more challenging.

But still, it is worth it.

I have always taken the stance that I, as a parent, and soon Tessa, as an individual with Down syndrome, will have to spend a lot of time teaching people about her needs.  When the unexpected happens, when unkind words are shared or people are impatient or rude, we can react in anger or frustration… or we can use that time to teach.

Our school teachers are no different.  We can advocate for our children by understanding that their teachers do not know our children and by showing a willingness to help them understand.  They may have have received no training on working with a child like mine.

(On a side note just as an example, in my teacher training, I had one 10 week class on Methods of Inclusion (along with a clinical observation requirement).  We had a little sprinkling of information about all kinds of special needs and how they might show up in our classrooms.)

(And on another side note, teachers who are unwilling to learn about their students receive no sympathy from me.  If you aren’t willing to educate every child that crosses your path, you need to get out of the profession.)

If we, as parents, always take the stance that people just don’t know any better and that we are here teach them, imagine what a difference we could make.  Sometimes, even if you feel they should know better, they don’t.  Even if we think that they should have worked with a child with Down syndrome or Autism or any special need, they may not have.  Or they may not have done it well because no one ever taught them.

You can work with your child’s teachers.  You can talk to their schools about special training opportunities, presentations, and conferences.  You can talk to colleges and universities about their training programs.  Be open to sharing and teaching and people will learn.

People will learn.  We have to believe in them as much as we believe in our own children.

People will learn.

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Oct 25

Advocacy #25: Include me

by Maggie

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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Oct 23

Advocacy #23: Change the Face of Beauty

by Maggie

We interrupt this regularly scheduled program on inclusion because, quite frankly, it’s Friday night and I can’t communicate clearly on that today.  🙂

Changing the Face of Beauty is a campaign to promote diversity in advertising for major retailers. It was started in the Chicago area by a fellow DS Momma, Katie Driscoll.  She and her amazing team have gotten over 100 companies to commit to including models with a variety of disabilities in their advertising.

Target is the only major retailer to consistently use models with disabilities in their advertising.  That’s sad.

Changing the Face of Beauty.
Like them on Facebook.

LOVE them.

Support them.

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Oct 22

Advocacy #22: Inclusion Part 2

by Maggie

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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Oct 21

Advocacy #21: Inclusion Part 1

by Maggie

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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Oct 20

Advocacy #20: Can we please stop with the 92%??

by Maggie

I apologize in advance for striking a nerve maybe.  But also maybe not.

This is the last time that I will reference this topic here on Yo Soy La Lay.

There is a statistic often shared in our community, most especially by new parents, who seem to have “chosen the unthinkable” by going through with a Down syndrome pregnancy.  The statistic is that 92% of women abort their babies when they find out that it has Down syndrome. Yes, I even (sort of) referenced it back in the “early days.” 

Let’s just get this out of the way first:  Is this a valid stat?  Well, no, not exactly.  It is based on a 1999 comprehensive study of other mostly European studies done between 1980 and 1998.  It also only accounts for those with a prenatal diagnosis (because clearly, those of us without the testing didn’t terminate).  A more recent study (2011) of a variety of international studies found that the termination rate is 65-85% and varies tremendously based on maternal age/race/ethnicity and other factors.  See the full abstract here.  That number still doesn’t give any indication of how many babies are born with a birth diagnosis.  We really don’t have a solid number on how many babies overall are diagnosed versus how many are terminated.

Beyond the whole issue with the statistic not actually being true, can we talk for one moment about the implications of centering our advocacy efforts around whether or not people have abortions?

Bear with my terrible analogy here.  Imagine you are trying to pick a restaurant for dinner.  Looking through reviews, you see that 92% of people would not recommend eating at the local Dutch restaurant.  You can see that a couple people are raving about it, saying it’s the best meal they ever ate, but overall, the vast majority, 92%, insist that this is just not a good restaurant to try out.  They haven’t tried it, but someone they know told them it might make you sick, it’s overpriced, or it’ll ruin your ability to enjoy a nice movie afterward because you’ll feel so miserable.  Likely, upon seeing that, you are going to do one of two things: you’re going to avoid that restaurant altogether or if you decide to dine there anyway, you’re heading into it with quite a bit of fear about whether you’re going to end up with food poisoning or a nasty waiter.

Do you catch my drift?

Look, I am all in favor of lowering the number of abortions, period.  Does that statistic (even the realistic one) cause me pain?  Yes, of course.  It infuriates me.  But, I think it is important to choose our brand of advocacy carefully.  And my preference is to advocate for the relevance of the lives of people with disabilities through knowledge about what our (very mundane) life is actually like.

You will never convince someone not to have an abortion by telling them that they are a horrible person or a baby killer or a sinner or that they are cruel and heartless.  You convince people with love, with facts, with hope, with information, with resources, with options, with a real understanding of life.

I understand the conversation started by the statistic.  I respect the conversation.  It’s just not a conversation that I choose as a central theme in my advocacy efforts.  We all advocate differently…. that conversation is not my way.

And now, comic relief:

https://youtu.be/nQ_yD4Xe5as

https://youtu.be/av0gX3mK9cQ

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Oct 19

Advocacy #19: Give the siblings a little credit!

by Maggie

It is a little disheartening when people worry (quite intensely) about Ellie’s role in her sister’s life.

My sister does not have any kind of disability.  In reality, someday, she could end up with one.  We all could.  One accident, one illness, one life event that doesn’t go as planned and we may find ourselves needing help.

I would walk my sister to the ends of the earth if she needed it.

In a 2011 study (abstract linked here), 94 percent of siblings age 9 and older expressed feelings of pride about their sibling. 88 percent said they felt they were better people because of their sibling with Down syndrome. Only 4 percent said they would “trade their sibling in” for another.

In our home, Ellie finds plenty of ways to shine, but she also adores her little sister.  I’m not naive enough to think that every day will be fabulous and that there won’t be times when Ellie resents the attention or the treatment that Tessa gets… but believe me, those same feelings will come from Tessa about Ellie as well… as they do in any family situation.

What I am saying is that it is helpful if you just treat them as what they are – siblings.  Not as one being dependent on the other, not as if one may be a burden, but as two sisters who lean on each other for support from time to time.  Often times, advocacy is in the simple act of just letting us be typical.  We are just typical.

These two… typical.

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(Yes, that is a pen drawing on Tessa’s forehead.  Ellie thought she needed a tattoo.)

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Oct 18

Advocacy #18: Encourage doctors to get it right

by Maggie

Did you know that several states are working to pass laws right now that would require doctors to give current, unbiased information to parents who are given a Down syndrome diagnosis for their child?

If you think like I do, you might wonder why we need such a law.  It seems odd, doesn’t it?  Why wouldn’t a doctor provide parents with accurate and up-to-date information about this diagnosis?  Why wouldn’t you expect that doctor to know what he is talking about and trust that he is giving you the most current data?

Well, sometimes they don’t.  Actually, many times, they don’t.  Page through the book Unexpected and you will hear lots of stories about medical professionals who got it wrong.  I believe that ours got it right.  And I believe that part of why they were able to communicate so well with us is because we have some groups that really work hard to educate medical professionals on what life is like now with a child who has Down syndrome.

The National Association for Down Syndrome (NADS) is one of our local groups and is actually the group started back in 1961 when a group of parents in the Chicago area decided to raise their babies at home rather than sending them into institutions.  Among a lot of other programming, they send groups of parents and advocates into area hospitals to meet with medical professionals and help them learn about our lives.  They encourage physicians to ask questions and open the line of communication so that others can move past their initial fears. 

On a national scale (and even international), the Down Syndrome Diagnosis Network is also working hard to provide current, relevant information to medical professionals so that they can work with families.  They offer a variety of print materials for doctors and nurses to read for heir own knowledge, as well as items to share with families.

Both of these organizations are well worth your time to check out.  We are so thankful that we and others can access this information!!!

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Oct 17

Advocacy #17: Let me act my age.

by Maggie

A letter from Tessa to everyone:

Dear everyone,

My mom says to tell you that she promises not to make a habit of talking for me.  She keeps telling me that I will have to “advocate” someday too and that she will speak up for me until I do it on my own and then she will speak with me, not for me.

But I want to tell you something!  Did you know that soon, I will be two?!  Can you believe it??  My birthday is coming in a couple short months, and even though I don’t walk yet or talk yet, I’m a toddler!

I know it’s hard to remember because sometimes I do things that babies do… And I’m little, so I look kinda like a baby.  But ya know what?  I really like it when you treat me like I’m my age.  

I hear that lots of people like me feel the same way!  It can be hard when people treat others with Down syndrome like they are kids, even when they are not.  Once my mom told me that she hopes people will always “presume competence” and make accommodations for areas that challenge me, but not “lower the bar” or treat me like I don’t know what it means to be an adult.  I don’t really get what she means by all that mumbo jumbo.  All I know is that I want people to believe that I’m not a baby.  I just want to be one of the kids! 
You can advocate for me by showing the world that I am my age.  If you always treat me like a baby, it might be harder for me to grow!  Plus, I get a little bummed out when other kids my age get to do fun stuff and people think I can’t be a part of it.  Let me play with kids my age – let me have the same privileges and experiences that they do (especially if it involves treats).  I will raise to whatever bar you set for me, so make it high. 

Love you!

Tessa

  

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