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. ūüôā )

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 ‚Äď 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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State of Our Union, February 2016.

It’s time for a good, old-fashioned¬†State of Our Union update.

My lack of writing hasn’t been for lack of topic, or even lack of energy. ¬†Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page. ¬†What I haven’t found is an environment in which I can feel settled in and focused on the words. ¬†This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.

It’s weird.

We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer. ¬†Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness. ¬†For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time. ¬†We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year. ¬†Next year’s schedule, next year’s group of students, next year’s curriculum.

See? ¬†No settled, no focus. ¬†I’m like one of those frustrating novels that keeps flipping back and forth between time frames.

Those make me nuts.

Ellie’s big “news” is that she is officially a¬†reader. ¬†This is something that she is super excited about. ¬†She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled. ¬†Last night, I came home with some kind of cold virus. ¬†She plopped me on the couch, covered me with a blanket, and sat down with¬†Are You My Mother?¬†. ¬†She read me the whole thing, cover to cover. ¬†It took her an exceptionally long time, but she stuck to it. ¬†So cool!!

We’re getting ready to enroll her in Kindergarten next year. ¬†Like most parents, I’m not sure how we got to this point already. ¬†The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to. ¬†She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split. ¬†We toured the school recently and I feel pretty confident that it is the right fit for her. ¬†We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.

Please let that sink in for a few moments.  Tessa.  Learning SPANISH.

There is no “no.” ¬†There is only “how can we make this work?”

Speaking of Little Miss… we have an annual review coming up on Monday. ¬†She is on a roll these days!¬† No, no walking yet. ¬†No, I’m still not stressed about it. ¬†When she gets too heavy to carry, we’ll have another conversation. ¬†Right now, her words and her play skills are totally blossoming. ¬†We are still using sign quite a bit, but she is picking up on words and phrases left and right. ¬†The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face. ¬†It kills me. ¬†SO cute.

Her interactive play has also grown extensively. ¬†Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there. ¬†She’s gotten quite good at distraction. ¬†When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble! ¬†In public places, she is a total ham with other adults. ¬†This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.

Suffice to say, we’re rolling along now. ¬†Good things are on the horizon, but good things are happening now, too. ¬†It may feel unsettled, yes, but good.

I haven’t had the opportunity to sync my latest pictures recently. ¬†We’re over on Instagram now, participating in the #365ofDisability. ¬†If you want to join us, we are @yosoylalay . ¬†Lots of cuteness going on over there. ¬†ūüôā

Happy almost-Valentine’s Day!

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In which we begin again

Another school year begins tomorrow. That blissful stretch of open road that lay before me back in May¬†has now reached a dead end. Or maybe one of those intersections where you have to turn left or right into a hectic routine. You can’t continue on the open road of summer forever… not in this house.

In two separate and totally unrelated incidences, my mom and father-and-law turned to me as I was playing with Tessa and said the exact same thing: “You’re really going to miss her this year, aren’t you?” This statement has given me pause because it isn’t something that anyone has said to me before in regards to either of my children. Not when I returned after maternity leave, not at the end of any other summer break… not ever. I adore all of my family members, even my husband ;), so I’m trying to put my finger on what exactly it is about this child that makes the separation more intense.

Basically, it’s because I’m a control freak. I mean, there is that sweet smile that sends us all over the moon (especially me), but let’s be honest here. In seven and a half months, I have missed exactly one doctor appointment and 1.5 therapy sessions out of a zillion. This school year, Tessa will have both OT and Speech at daycare without me. I may have to miss a doctor appointment here and there. And I’m not done training John on how to best keep track of information for me! It’s a forced transition into letting go just a little bit. That’s good for me and my child.

To be frank, my brain needs a break from Google. I spend every spare moment networking, researching, reading about Down syndrome. It makes me a little bit insane. It’s unneccesary. It doesn’t do any of us any good. I am determined to provide Tessa with a quality life with many choices. I don’t want to “cure” her or to change her, but instead hope to create an environment in which she can thrive. I can do that best by giving my brain a break and the best way I can do that is to begin the school year again. So off we go!

And now, cuteness:

Tessa helped us get the room clean in the best way she knows how…

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I just love this picture that my sister took…

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Ellie and Tessa, hanging out as sisters do…

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And finally, Tessa’s first toenail polish…

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