Yo soy La Lay

adventures in family, faith, and Down syndrome

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 #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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Lesson #15: We owe a lot to parents of the past

This is part of the 31 for 21 Blog Challenge!

I’m cheating a little tonight…. not because I don’t have time to write.  Actually, one thing I DO have tonight is time.  However, I want to share the words of another mom… words that I’ve been trying to find a way to express for quite some time and frankly, she does a better job than any of the drafts that I have come up with.

Please click below to read…

To the Mother of the Adult Son With Down Syndrome in the Grocery Store Today

Tessa, 20 days old

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