Yo soy La Lay

adventures in family, faith, and Down syndrome

Not settling

I have been told recently that life isn’t fair.


This news doesn’t come as much of a surprise to me.  Once I moved beyond the age of oh, 14 or so, I never expected it to be.

The context of this statement, though, is what rattled me.  As I’m sure you can guess, the circumstances revolved around this little girl:


(when was the last time your face showed that much joy?)

You see, the political climate being what it is these days, I found myself in a debate of sorts with a dear family member about school choice and the impact that it has on children with disabilities.

Throughout our conversation, I was told about the great “special needs schools” that my daughter could attend.  Schools that “specialize” in her “special needs.”  Schools that are “specially equipped” to “handle” the “special care” of our “special girl.”


Dude.  Stop.

I tried to get someone to explain to me why it is that Girlfriend needs all this “special stuff,” most especially when research indicates time and time again that what is actually best for her is to be educated in a typical classroom alongside her typical peers.

(I mean, if you ask me, while she may be hard to understand, she’s kind of a standard three-year-old.)


The only answer that I got, really, was that life isn’t fair.  Basically, we just got dealt a shitty hand, so good luck.  Good thing there are those “special schools.”

I bowed out of the conversation there.

Here’s the thing.  

Down syndrome isn’t the reason that life is unfair for Tessa. It’s not shitty.  People are.  Down syndrome is not some awful life experience to overcome, but the belief that it is awful, is a problem. 


The problem is that no, life isn’t fair, but that doesn’t excuse us from the responsibility to make it better, not just for ourselves, but for anyone.

Our fight to keep Tessa in a regular classroom is very much about her, but it’s also about any other child who walks through the door of that school building – or any building.

(It’s also about the law, though that pesky little thing seems to be lost on a lot of people these days.)


It’s about changing perceptions about what people need.

Not pity. Acceptance.

Not charity. Kindness.

Not escorting off into some “special place” for their “special needs.”  Inclusion.


It hits you right in the gut when the fight is so close to home.  It is bad enough when perfect strangers are the culprit, but let’s be honest, it’s a thousand times more discouraging when people who know and love our sweet girl still don’t get it.  

We’re not settling for special.

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Dear Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings.  You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry.  I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Dear Brooke

Dear Brooke,

I didn’t know if it was happening anywhere… and then I walked into your classroom.

Ceramics 1, Gen Ed Elective.

Fully including a handful of our students with the highest of needs.

I try to keep my own life from taking center stage in my career, but Girlfriend, my heart grew leaps and bounds that day.  This little group of students, who many would believe cannot learn at any sort of valuable level… these kids weren’t just sitting in the corner making pinch pots while their typical peers advanced through the art curriculum.

They were critiquing art.

This was the first time I had really seen a teacher at the high school level successful accommodate students with significant learning needs without watering down the content.  And with all your preps and coaching responsibilities and outside coursework on top of teaching, you still took the time to really think about how to serve these students in your classroom.  These kids were artists and critics and a part of the class like any other.

I think my favorite part of this observation was when we chatted afterwards and I told you how awesome you did with that group.  You were totally modest and actually a little perplexed as to why this would be so extraordinary.

Thanks for showing me how possible it is, and for being the first of many awesome teachers that I have had the chance to observe just being inclusive because duh, why wouldn’t we be? I’m so thankful to have you on our team.

Maggie

This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Dear Nieces and Nephews

To my darling nieces and nephews,

I really love being a mom… and probably equally as much, I love being your aunt!!  It makes me so happy to watch you all play and learn and grow.  This weekend, I got to see all eight of you and boy, it was so much fun!!

You are all so different and that is fun to watch.  You all love to play the things that are most exciting for you… and as I watched this weekend, I saw that you each play in your own special way.  Some of you are bossy, some of you are not.  Maybe you are quiet or silly or sweet or grumbly.  One or two of you like to play one-on-one, where you are alone with an adult or just one cousin.  Some others like to put on a show for everyone.  I know that some of you are starting to notice that Tessa is a little different than everyone, too.  She has some different things that she uses, like her leg braces or her walker.  Sometimes she says a lot of words to you but you can’t understand what she says.  Or she uses her hands for sign language.

All of you are growing fast fast fast, even Tessa.  It’s hard for her to walk or talk like you big kids, so I know you sometimes forget that she is not a baby.  I love when she plays with you!  I hope that when she sees you run, she’ll want to run too!  She learns a lot by watching what you do.  That doesn’t mean that you always have to be on your best behavior when you are around her (but you do have to be on your best behavior because your parents say so).

If you have questions about the things that she does, you can always ask me or Uncle Johnny.  What is most important is that you just keep playing with her like all the other kids.  She is a tough little girl, just like the rest of you, and she just wants to do the things that you do… it just takes her a little longer to learn how.

Love you guys!

Auntie Mags

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

 

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Dear Well-Meaning Friends who recommend the “other” stuff

Dear Well-Meaning Friends who recommend the Other Stuff,

I understand your sentiment, and I appreciate your thought, I really do.  There isn’t a week that goes by that we aren’t informed of something special just for Tessa and “kids like her.”  There’s a new church group just for kids with disabilities… there’s a program at the local dance studio for “special” little dancers… try out these new play groups, too!!

Sigh.

I get that these programs make places seem welcoming, and that to you, it feels like they are doing a good thing for the community.  It’s an effort made, and I really do understand the draw.  However, my perspective is a little different.  You see, to me, the notion that we need something special and separate is a tough pill to swallow.  As someone on the newer side of special needs, I can very distinctly remember recoiling in shock the first time someone suggested a special place for our special child.  I’m sure I smiled and nodded, probably said thank you so much, but in my brain, this:

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Is this me living in denial?  I don’t know why it has to be called that.  I don’t know why it makes people more comfortable to include by exclusion.  Because to me, that’s what special programs are all about.  They tells us that Tessa can’t be as good as the other kids, or can’t handle the speed of the program, or can’t be accommodated.

We don’t much like the word can’t in our house, most especially without trying it first.  So please excuse us while we insert ourselves into your regular community.   Thank you for your offer of a special opportunity, but for now, I think we will pass.  This might be uncomfortable, for us and for you.  Maybe I just hope it’s uncomfortable in that good way that means that all of us are growing and learning.  Because growing and learning is what we’re all about around here.

Thanks for your consideration,

Maggie

This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Size Matters


(Ellie and Tessa in the same 4th of July outfit.  Ellie is one. Tessa is two and a half.)

Two and a half.

25 pounds soaking wet.

A little tiny package bursting with laughter and joy and sunshine.

Our park district has an amazing indoor play area where we like to bring the kids to get their energy out.  It’s huge, with oodles of slides and soft-cushioned obstacles to climb through and around. They have an area that is just for little ones and it is there that we like to let Tessa roam free and explore.  Mostly because it is caged and keeps her out of trouble. 🙂 

There are, of course, other children in the play area and I am so often amused when I see her surrounded by infants.  The sheer size of her peers is so markedly different.  And inevitably, another mom will come over to make conversation, hoping to commiserate on the exhaustion of having an infant in the house.

I wait for the question.  I know it’s coming because it always does.

“She’s so cute,” they say, “how old is she?”

“She’s two and a half.”

Inside, I cringe and wait for the response.  They vary, but usually it involves an effort to restrain eyes bugging out of their head and an oddly confused smile.  “Oooh,” they say, their eyes darting back and forth between my child and theirs, sizing up the differences.  Mostly, the conversation kind of dies.

One time, a mom literally asked me if I was sure.  She shared that her daughter is that same age and asked when her birthday is.  She thought I had miscalculated my own child’s age.

That was awkward.

A small part of me just wants to lie when I get asked.  Would it be any easier to just tell them she is 15 months or 18 or whatever number I feel like throwing out?  Maybe I’ll really wow them and say that she is 10 months.  That could be fun!

I think, as parents, we might all be happier if we could just stop asking each other how old our children are.  It does nothing good – just feeds into this urge to compare.  And what good are comparisons anyway?  One is potty trained, one isn’t. One is reading, one isn’t.  One is sitting or walking or talking or whatever.  Some are not.  They are not less.  Different, perhaps, but not less.

But more than that, I’m sad for the conversations that die out.  Our experiences are probably a little different in parenting, there’s no denying that.  But we can still share.  We are parents in the same community.  Our children will grow up near each other.   Commiseration gets us through some days!!  And even if my little one is on the scenic route, she’s headed in the same direction as all the other little ones – up, up, up.  I’m just a mom.  She is just a kid.  So let’s talk!


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Advocacy #27: Include me outside of school, too

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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Advocacy #26: Include me – support the teachers

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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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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