Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Self Advocates

Dear Self Advocates,

I am so thankful for your voices.

While I love to read blogs written by the mothers and fathers of children with disabilities, it is your words that matter the most to me, your words that hit home.

There are more individuals living with disability who are sharing their stories than I could possibly list here.  However, Aubsome Aubrey, Anonymously Autistic, Tim Harris, the cast of Born This Way, and @djmpoweraz (instagram), you all give me a perspective that I could never get from just reading the stories of parents.

No one person can give the single story of what it is like to live with Down syndrome or Autism or CP or any other disability.  Collectively, your perspectives matter.  I thank you for being willing to share – because it helps me think about the decisions I make for Tessa so that she can be her best self.  Your stories give me pause; they open the eyes of the public to your joys and successes, as well as your trials and fears.  They teach us more about how to treat one another.

I hope you’ll keep writing or vloging or speaking or instagramming, or whatever medium you choose to be your megaphone.  You are making a difference in the lives of families by using your voice and our little ones will be better for the stories that you share.

Thank you so much for sharing,

Tessa’s Mom

 

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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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Incomprehensible

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song.  I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory.  Like for many around me, it is hard to digest all that has happened this week.  I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.  

We have so much.

I did not wake to the news of Dallas this morning.  Before the national news, another devastating headline about a former student crossed my feed.  He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures.  I don’t know that either can help a person gain perspective or bring warring sides together.  But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.  

He had been through so much.  Made so many bad choices.  An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now.  We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement.  Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can.  I pray and try to be kind and gentle.  I don’t know what else to do.  I don’t know what words to say.  I don’t know how to stop the hurt.

This morning, Tessa sang me a song.  Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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