Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Marcus

Marcus,

Dude, my kids love the book that you wrote.  Black Day: Monster Rock Band is a great story!  Every single day, they come home from school, throw down their bags, and beg us to play the Black Day DVD on repeat.  Then we read the book before bed.  My husband is learning to play the song on his guitar so that they can sing it all the time.

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We love Halloween in our house, so the story is perfect, especially for this time of year.  I asked Ellie to tell me what her favorite part of the story is and she told us “pretty much everything.”  Tessa loves to sing the song.  It’s still hard for her to sing most of it, but she is really good at saying “black day” now.

We are so glad that we got to meet you at the NADS Conference.  Ellie tells all her friends that you signed her book.  It made her so happy.  Your mom is so awesome!  I hope you can come back to Chicago again soon.  My girls would love to meet you!

Let us know when we can buy the sequel!

Maggie

Marcus is a 26-year-old story teller who happens to have Down syndrome.  You can read more about Marcus’ book here, as well as buy a copy for your family.  I highly recommend it!  It is perfect for Halloween.

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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 Kristina and Sarah

Dear Kristina and Sarah,

Thank you so much for visiting our home, listening to our story, and being part of a project that is open to changing the dialog about disability in the medical community.

(For readers who are “new” to Kristina and Sarah, these two ladies are a part of LEND, the University of Illinois at Chicago’s program for Leadership and Education in Neurodevelopmental and related Disabilities.  They came to our house last weekend to talk with us about how disability has impacted our family.  You can find out more about their project here.)

I’m sure you thought we might be a little crazy.  I’m sorry that my children pretty much force-fed you chips for two hours.  Thank you for patiently listening as Ellie read you 47 Strings.  It’s how she makes sense of Down syndrome right now,  and boy, I’m sure you can tell, she loves to have an audience.

(A reminder that you promised not to write about her offering you wine.  I’m still blushing.)

As I told you that evening, we believe that the type of advocacy that fits our family is telling people about our life – it’s one of the main reasons that I write in an open forum rather than in a personal journal.  I would love to think that we can change minds just by being out and about in the community, but I also know that almost three years ago, when I was sitting in my hospital room alone while my new baby slept down in the NICU, I craved information.  I needed to know what life would be like.  And I found that information by reading the stories that people had shared online.

We are so grateful to know that future medical professionals are willing to listen, learn, and be influenced by the voices of the self-advocates that meet with your group.  I appreciate that you listened to our story, and that you will have the opportunity to hear from so many others who walk parallel paths.  Certainly our story is not the single story that speaks for all those with disability.  But thank you for taking in our perspective, and for already making a difference in the lives of families, just by LENDing an ear.

Maggie

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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 Kellie

Dear Kellie,

(No, not you, Kelly.  That’s another post for another day. 🙂 )

In an odd coincidence, perhaps foreshadowing what was to come, on the day that my OB called to tell me that my HCG levels were rising nicely and that I could expect this pregnancy to continue, I spent the day with you.  Well before the words “Down syndrome” or “inclusion” or “least restrictive environment” were a part of my every day thoughts, before my life was catapulted in an entirely different direction, my task was to shadow you, an elementary school principal, so that I could learn about your position.

I had chosen your school because you had been highly recommended to me (one of the best, they told me) and because at the time, I knew that someday, Ellie and this little one growing in my belly, would walk the halls of your building as students.

I was nervous, having not stepped foot in an elementary building since I was a child myself.  But you were kind and helpful, welcoming me into your day and talking me through your usual schedule.

On the docket for our day was a family visit.  This new family had just moved into the district, you explained, and while they lived within the boundaries of this building, one of the children had a disability.  You explained to me that while the other two siblings would be able to attend your school, the littlest girl would need to be placed in another building, where children with her type of disability were housed, so that her needs could be met.  You and I would travel to the other building, meet with the parents and the other principal, tour that school, and our goal was to help the parent understand why his daughter could not attend her home school.  Her parents were pushing for her to stay at the home school, and in your words, that isn’t how things are done in your district.

I was floored.

Before I ever had Tessa, before I was as well-versed in the law as I am now, before this fight for inclusion had come the forefront of my mind, I knew this was wrong. I knew it.  I didn’t understand how this child could be separated, segregated, away from her family, away from her neighborhood.  At the time, I didn’t know enough to ask the right questions; I didn’t know to push you to think about this in a different way.  But I knew it was wrong.  And to be honest, I think you did, too.

It is because of this very day, that promptly after Tessa was born, we made a plan to move before she would go to school. My feelings on that day drive so much of what I do now.  I cannot even imagine how different that day could have been if I were to live it today.  Because today, I have a stronger voice, and I use it.  I wish, for that girl, on that day, I would have said something.  I suppose I can be thankful that God put me in that place, on that day, to prepare me to advocate in the future.  I understand that you have moved on from that building and pray that you are in a district that encourages you to promote education in the least restrictive environment for all students, as is required by law.  I pray that you no longer group students based on a diagnosis, and that you have grown in some small way to understand that segregation is wholly inappropriate for children to reach their potential.

All the best,

Maggie

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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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Advocacy #31: Imagine what if….

For 31 days, we have shared a lot about what advocacy means to our family in our little corner of the world.  On this last day, I invite you to image what if with us.

IMG_9574What if we stopped equating smart with successful?

What if we believed that those who are not “smart” still have something to contribute?

Imagine a mom getting a diagnosis of Down syndrome in a world where it didn’t matter if her child would be smart.  What if she knew that the child would be accepted, taught, cared for, and loved regardless?

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What if we presumed competence in all?  And when someone doesn’t understand, what if, instead of being frustrated, we reacted with patience and love?

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What if we stopped believing that a classroom of learners who struggle is a “dumping ground”?

What if we stopped encouraging families touched by disability to band together in separate places and in separate communities and just embraced everyone?

Imagine parents learning that their child has Down syndrome in a world where they knew that their schools and communities wouldn’t bar them from participating in classrooms and activities.  Imagine never questioning whether your child would be allowed to participate in birthday parties, field trips, assemblies, or just in plain old school.

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What if we stopped believing that the brightest are the best and instead believed that those who are joyful, humble, caring, and kind are what we need most?

What if we stopped seeing advocacy as a way of “helping the less fortunate” and instead just saw it as being a human being?

What if we stopped seeing the disabled as less-fortunate altogether?

What if we always, always chose kind?

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What if we could see beauty in the differences that make each of us unique?

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What if we respected people’s feelings and beliefs and didn’t walk through life with the attitude that a different perspective makes someone a bad person or less worthy of kindness and love?

What if we could stop seeing another perspective as an attack on our own thoughts and feelings?

What if we just chose love?  Always.

YOU can make the difference.  YOU can be the Hands and Feet.  YOU can advocate in small ways, big ways, in thoughts, in actions, with money, with words, or with nothing but kindness.

I have a playlist on my iPhone called “Fight Song.”  It is made up of a series of songs that I find motivational and I listen to it on my way to work every single day.  It’s not that I need motivation to go to work everyday. I actually really love my job.  And it’s not that I’m fighting anything or anyone in particular at all.  These songs just tend to fill me up with the energy and positive feelings that I think are so important. They remind me to be brave, to be kind, and to do good.

The first song, the song I start each and every day with, is below.  As a last thought, before we go back to our regularly scheduled program of family antics and less-relevant rambling, I encourage you to watch the video, listen to the words and imagine if this song could drive what you do every day.

Imagine if this is how we lived.

What if?

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Advocacy #29: Support Early Intervention

Early Intervention is not a new topic here.  The number of posts tagged “Early Intervention” takes up three full pages on this site.  Right now, funding for EI is on the chopping block in Illinois.  We have a budget problem for a lot of reasons and every cranky person in the state has an explanation (some real, some not) and a solution (some constitutional and some not) and while the rest of the world has the benefit of just being able to complain about it without having their worlds turned upside down, my family does not have that luxury.  More on that tomorrow.  Today, some background on EI.

Early Intervention started in 1986.  It provides therapy services for children ages birth to three that show some developmental delays, be they physical, social, emotional, or cognitive.

EI is partially funded by the state, partially through federal funds, and families pay a monthly fee on a sliding scale based on income.

States can decide how to set up their EI programs within some federal guidelines.  Right now in Illinois, a child has to display a 30% delay to qualify.  It is estimated that about about 13% of children qualify for services, but only 20,000 kids are getting services right now (about 3.5%).

Each child develops an Individual Family Service Plan (IFSP) and goals to help the child function in their environment.  Goals are reviewed every six months.  Services (therapies) are scheduled based on what the goals for each child are.  Therapists come to the home to provide these services.

It is estimated that about 50% of children who enter EI as children are able to be remediated in their skills to the point where they do not need Special Education services when they enter the public school system.  Those who are not completely remediated still make significant gains.  And the earlier we start, the farther they go.

Early Intervention is crucial.

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Advocacy #28: RUN

John takes over tonight for one of the kinds of advocacy that I have stayed away from… running.

When Tessa was about a month old, Maggie signed us up for a seminar on inclusion.  If you haven’t figured this out already, Maggie is a bit of a planner (this is also known around the world as a diagnosis of “Type A”).  Anyway, my planning wife was planning for our daughter’s future school three years in advance, while I was just trying to get through a Saturday.

While Mag walked into the seminar with a plan for our future… I walked into the seminar (begrudgingly, I might add, as I am still aiming for personal growth in the advocacy department) with no plan and no idea what I was in for.  When I sat down, I noticed a brochure to be part of the Ups for DownS Charity Running Team.  I looked through the information and here’s what it boiled down to:

  • Run the Chicago Rock n’ Roll Half
  • Raise money for Ups for DownS
  • Raise awareness for Down syndrome

I took home the brochure and told Mag that I felt compelled to run and she told me I had her whole support.  She was tired of me doing races just for “fun” because she always said I could just do that on the street for free.  Being a charity runner made much more sense to her.  Her support was really important because in training, I can be gone on these runs for 2 or 3 hours sometimes.  And while I’m gone enjoying my music and shuffling along, she is there taking care of every burning need of my children.  To those of you who say it’s only a couple hours…clearly you haven’t met my children.  Sorry…back on topic.

When I signed up I thought:  Well, it’s for a good cause, it will be fun to run a race in Chicago, why not?   I mean, the worst case scenario was that I would end up paying most of my commitment to fundraise $250, but it would still be for a good cause and I didn’t really care if that happened.  Two years later, Team Tessa has collectively raced over 100 miles, raised over $8,000 and had 8 people join our team in support of a great cause.

Here’s the point I would like to make about running and advocacy… just like running, sometimes advocacy is difficult.  At times it’s hard to keep advocacy in mind.  At times advocacy asks us to step our of our comfort zone and step up for the people we care about.  And at times running for a cause seems as substantial or more so than those other challenges.  But here’s the thing:  People in our life continue to step up to support her and people like her.  You see, advocacy doesn’t have to be grand and with pomp and circumstance.  Sometimes it can be as simple as shuffling one mile after another to run for a little girl who deserves our love and acceptance just the way she is.  Thanks to all of you that do that…and a shameless plug here: There’s always room on Team Tessa for more runners!

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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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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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