Yo soy La Lay

adventures in family, faith, and Down syndrome

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 Ashley

Dear Ashlery,

Girlfriend, I miss ya.  It’s been almost ten years since we spent our first year teaching together up in that tiny little town.  They did a great job when they hired us to work together; we made such a great duo.  I couldn’t have done that first year without my constant companion at Friday Night Football, my dinner date to Chili’s like 5 nights a week, my early morning breakfast buddy, my Spain travel companion… should I keep going??

I think what I love the most about our friendship is that even as different as our lives may be, and for as long as we sometimes go without seeing each other, when we get to spend time together, it always feels like we see each other every day, like there has been no distance or time in the way.

The other day, I had written a comment on Facebook about how I was so glad to have you in my daughters’ lives. I really mean that.  I love that they can see someone so kind and loving, successful, confident, gorgeous, intelligent, who is an awesome friend and family member and a leader in her career.  I feel that it is so important that they be surrounded by strong women, and you are a shining example of that for them.

I often feel like a terrible friend these days.  I know that I have too many balls in the air right now and that my balance is a little off.  Another friend of mine always preaches that people find time for what is important to them and I don’t know, that seems a little unfair to me.  Maybe that is part of my struggle for balance.  In any case, I want you to know that I miss your face!  Thanks so much for always being there to help lift my spirits, hear my whining, and to drag me out for margaritas when I need it the most.

Cheers to pink, sparkly, shopaholic, wine-and-chocolate-loving girl bosses!  Now come over already, will ya??

Love,

Dub

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Dear Baby #1 and #3

Dear Baby #1 and #3,

I must be in a weepy mood this morning.

Perhaps.

Before Ellie and before Tessa, there were you two.  For a few precious weeks, we got to daydream about life with you, to think about who you might be and how fun it would be to have you to love and care for, to watch you grow.

God kept you before we met you and while we couldn’t understand it at the time, we do now.  If we had been sent you, how vastly different might our life be.

The pain of losing you both is eased only in having the grander plan revealed as life moves forward.  It’s really hard to say that I would rather have this baby than that one, but I understand the purpose in the suffering.  I can begin to recognize how each piece is starting to come together to make a far different picture than we imagined – not just because we have Ellie and Tessa, but because we don’t have you.

Little ones, you are loved.  I expect that you are making some others very happy up in Heaven, and that we’ll get to meet you some day.  Thanks for teaching us some lessons that we very much needed.

Hugs and Kisses,

Mom

:):

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 Blog Readers, Part 1

Dear Blog Readers,

Thanks for understanding that we love to be out and about loving life.  As such, tonight’s post is a short one.  More to come soon.  For now, I’m just happy you are here.

Hugs,

Maggie

A little cuteness to tide you over until tomorrow…




 

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 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 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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Dear Julie

Dear Julie,

Back when Ellie was a baby, we did not get off to a very good start with our in-home daycare experience.  Very thankfully, only months into her life, fate and a bunch of awesome family/friend connections brought us to you.

We know that  Ellie was a (generally pleasant) handful and you loved her for it.  I so appreciated having a friendship with you – my commute home was always a little longer than expected because we would chatter about the day while Ellie s l o w l y put her shoes on her little feet.

When Tessa was diagnosed, we were afraid of so many things.  One of our fears was that you might not be able to care for her.  We didn’t know how she would be, what her needs would be, or how you felt about the extra responsibilities of a child with special needs.  We ripped the bandaid off quickly, telling you almost right away about Down syndrome.

Of everyone we told, you had the best reaction of all.

Without even a second’s hesitation, you told us that you would love her just like you love all of the children you care for.  That was that.  And we couldn’t be more grateful for how you lived that statement for the rest of our time living in that area.

Our girls miss you.  They love going to Mimi’s house for daycare, but Ellie still talks all about her friends at Miss Julie’s house and how she is going to marry Aiden.  She even still takes care of her Michael’s stuffed animal.  She adored him!!!  I love seeing your family grow on Facebook.  You gave our girls such a wonderful start while John and I worked.  Thanks so much for being their daycare mommy.  We are so blessed to have been able to send our girls to you – thank you for just loving on Tessa like you do all the others.

Lots of love,

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 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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