Dream Planning and Future Opportunities for Special Needs

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This post is sponsored by Daymark Living.

I grew up in a family of people who pray. While those prayers were rooted in deep faith and accompanied with a history of tradition and church, the premise of the prayers were to let our thoughts be known–to speak our gratitude out loud and to unleash the deepest desires of our heart and give them wings; transform them from hidden thoughts to something bigger–spoken words empowered with the belief that what we asked could be granted. I remember countless prayers for babies, my grandpa adding “our grandchild on the way” to the line-up of other grandkids’ names in his prayers before they were even born. Intentions for these little lives were spoken out loud: “Please give them health, protect them, let them grow up to be kind,” and later continued into more specific prayers: “Let her find the right college, please help him do well on his test, keep him safe on this trip.”

I believe in the power of making our wishes known and unleashing dreams into spoken words. In parenting, it’s often what saves us from worrying too much but also what fuels us for the future and excites us for what’s possible. We talk about dreams as our children pull stethoscopes from their plastic doctor kits and we hint, “Maybe you’ll be a doctor someday!” Or when they swaddle their dolls and we tell them, “You’re going to make the best mama.”

When Nella was born, it took me a little while to figure out what those prayers look like–how to speak dreams out loud. I’d watch her gently nestle babies into her arms, patting them softly, and go to say, “You’re going to make the best mama someday” but stop myself, knowing it was highly unlikely.

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I believe in dreaming big and “nothing’s impossible,” but I also want to be responsibly realistic. Sometimes that’s hard with Down syndrome when we understand legitimate limitations that will impact her future and yet are also living in a time when people with Down syndrome are accomplishing things they never have before.

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And so how do we dream? How do we speak intentions out loud, get excited about opportunities that will be available to her and follow a path toward real goals?

I’ve found three things that help me:

1. I focus on this: I want Nella to be happy, to contribute and to feel fulfilled in life. Period.
And what makes her happy and how she contributes or feels fulfilled might be different than what I think should fulfill her and make her happy. Brett used to love the possibility that Nella would live with us forever, and I frequently remind him, “She probably isn’t going to want to live with us.” She might want to live with other people who have Down syndrome. She might want to live alone. All I know is that whatever makes her happy and whatever she dreams of doing, we will work hard to support her in achieving that.

2. Knowledge is power.
There didn’t used to be very many options for the future. In fact institution and living at home were about it fifty years ago. But there are so many different ways to dream about the future for our kids now, thanks to new programs, opportunities and creative minds that are forging new paths. We know now that college is an option from working with Ruby’s Rainbow and that there are nearly 250 different college programs around the country for people with intellectual disabilities.

And there are new options. Daymark Living is one of them–an entire community dedicated to helping the developmentally disabled thrive.

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Daymark Living will be breaking ground soon in Waxahachie, Texas–a growing town (near Dallas/Ft. Worth) of 40,000 people that offers a historic walkable downtown, a welcoming community and something critical to people with disabilities–employment opportunities. And while Daymark Living might not be a “forever” option for many families, it can be a great fit for a specific time period and a perfect “away from home” college experience.

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Residents will increase independence while living at Daymark while having a huge support group of friends and staff along the journey. Daymark’s beautiful homes come with numerous amenities from daily resident programming and on-site healthcare to transportation into town, social events, pools, fire pits and monitored fitness rooms–all to increase quality of life and encourage greater independence and meaningful relationships.

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The Daymark Living dream started from a dad who has a son with Down syndrome and, like us, believes in the power of saying his dreams out loud. (I’m so glad he did)

Thinking about Nella’s future can sometimes be daunting, but knowing new opportunities like Daymark Living exist and clicking through their website? It gives me so much peace and direction toward realistic possibilities.

Which brings me to my third thing that helps me:

3. Plan for Greatness.
When we think about the future of our kids and plan for college and opportunities, we plan for ALL of them. Nella’s future isn’t exempt in that big dream pile for our kids. They will each find ways to fly away from the nest and experience the beauty the world offers, and we want to support all of them in their dreams.

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With that said, I have a little dream for Nella’s future. It might not be what she wants, and if that’s the case, we’ll follow her lead, but I believe in saying these dreams out loud. If just for me. I’ll throw it into the universe, like my grandpa did in those long prayers he made every single morning, pouring out the deepest desires of his heart for the grand kids he loved.

I dream of our house in the mountains–it’s small and charming with ivy crawling up the face of it, and there’s a red front door, but my favorite thing about it is the little mother-in-law house behind it, far enough away that it has its own space. That’s Nella’s house. She’s close enough to us that she can borrow a cup of sugar or ask for some help if she needs it, but she runs that precious space on her own…with her husband, of course. There are wildflowers in their front yard–Black-eyed Susans by the hundreds, and they don’t mind when I run over to cut some for my vases before dinner parties. I invite them to all my dinner parties and love when they come, but most of the time they are having fun with their own friends–and that makes me happy. I own a children’s bookstore in our little downtown, and Nella works there part time. She runs story hour every weekday at 10 a.m. for all the little kids, and they love to hear her read stories but mostly love the hugs she gives them after. She has another part time job–with benefits–in town and loves her work friends–and being a beloved aunt to her nieces and nephews. We’ve watched our kids grow up and follow their passions, and we’ve supported Nella as she’s tried new things, went to school, lived on her own and eventually fell in love and moved in to the little house out back. She is surrounded by love and people who will help support her when we are gone. We have worked hard, experienced challenges, overcome them together and learned a lot over the years. But we are here…and she is happy. And all those who know her are better for it. 

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I don’t know what the future holds, but I am grateful for more opportunities. Thank you Daymark Living for being one more star in the sky for our dreamers. If you are a parent who’s dreaming of more for your child, follow Daymark Living’s growth and feel free to inquire about the possibilities they hold.

If You Could Take Her Down Syndrome Away, Would You?

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I took the kids downtown this past weekend, an impromptu decision brought on by taking the dogs out early Sunday morning to be met by what us Florida folk call “a chill”–a drop in temps I’ll liberally define as “comparable to a northern fall.” Regardless, it was the kind of weather that begged us to be outside, so I dress the kids in long sleeves, throw Dash’s trike in the trunk, text Heidi with an invite to meet us and head south toward the fancy part of town we go to window shop and play at the good park.

“I’m doing this every weekend,” I always tell myself at the sight of so many people out and about, enjoying Fifth Avenue–mostly spry well-dressed rich people walking their dogs, but there are a few regular folk who help us blend in–that is, if you don’t count Dash ramming his tricycle into the front window displays of stores we have no business walking into. Or Nella, investigating the nether regions of street statues to see if their privates are showing.

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But the dogs–so many dogs, and my kids want to stop and make friends with every one of them.

What’s his name?
Is he nice?
Can we pet him?

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We pet Boomer and Kiki and Reba while their owners wait patiently and smile at my kids.

Heidi talks to a woman who’s sitting in the sunshine, enjoying a coffee. I’m distracted, making sure Dash is gentle with the dog he’s petting, but look up when Heidi calls me. “Kelle!” She smiles. “She has a son with Down syndrome,” she says, pointing to the older woman who’s intently watching Nella play.

“You do?” I say, “How old is he?”

There’s a pause that prepares me for what I know follows. “He passed away,” she answers. “Thirty-two years ago.”

“I’m sorry,” I say. “I bet you miss him every day.”

We talk a little bit about how things have changed for people with Down syndrome these past several years before I gather the kids to keep walking, and then Heidi grabs my arm.

“I’m sorry, Kell. Is that hard to hear?” she asks.

“I’m used to it,” I smile. “I guess I’m just thankful that so much has changed.”

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For one, how did word travel thirty-two years ago? How could a mother tell the world the secret story she discovered when she took that baby home? That the joy and love her child radiated and his will to learn and contribute was far more powerful than the narrative she had been told to believe about him. How could she spread word of the powers of human connection she was discovering–the way she saw things differently, the way all her investments in a life of comfort and convenience had crumbled only to give way to something new she didn’t realize existed–an understanding that allowed her to love better, fight harder, and appreciate people for every ounce of spirit that beams from their very existence.

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Do you know what the life expectancy was for a person with Down syndrome in 1983? 25.
And today? 60, with many people with Down syndrome living into their 70s. And while much of this is due to the end of inhumanely institutionalizing individuals, I believe so many of the actions that have changed the outlooks for our children’s future are due to the power of story–moms and dads and grandmas and grandpas, brothers and sisters and friends shouting to the world, “She is worthy, she is smart, she is beautiful, she is happy, she is funny, she is capable, and you know what? She’s a lot like your kid.” Now that we have more tools to be heard, seen and to tell our stories, the world is expanding.

This month, for Down Syndrome Awareness month, I’ve read countless stories from families of a child with Down syndrome–how much these kids are loved, how much their families can’t imagine life without them, how they believe in them, advocate for them and continue to discover–alongside their children–what life is truly about. Based on the algorithms of who I follow on Instagram, my entire Explore page is full of babies of Down syndrome, so I frequently pop in to see these new families beginning. Behind the rawness of the uncertainty of those first few months, the love is palpable, and that’s the most powerful foundation a story can have.

Last month I spoke at the annual conference for the Utah Down Syndrome Foundation, the theme of which celebrated the power of storytelling in advocacy. Yes, things have changed and yes, raising a child with Down syndrome in 2016 is so much easier than it was in 1983, but there’s still an outdated narrative that our stories need to flood out–that this isn’t some sad thing that happened to us that burdens our everyday life. Someone in the crowd raised her hand and asked a question I hadn’t been asked in a long time–“If you could take her Down syndrome away, would you?”

It’s a hard question to answer. We try and separate Down syndrome from who Nella is and often compare her challenges to that of asthma or allergies in that it’s just something she has, not something she is. And yet if you asked any mama if they would take away asthma from their child, I’m sure they’d jump at the chance. No one likes to see their child go through physical struggles, especially ones that affect the opportunities they’re presented with.

But I can’t imagine Nella without Down syndrome, and in a way it is part of who she is. There’s a love, a vibrancy, a compassion, an awareness of people’s need to be seen, and a determination to take in the world that is just…well, Nella, and I don’t know how much of it may be wrapped up in the mystery of that extra chromosome.

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Would I change her? Not her spirit, not her face, not her will, not her heart. Not the way she’s taught me to slow down and stop expecting life to roll out exactly how I planned. Not her crescent moon eyes that squint into tiny slits every time she smiles or the way, when her hand is in mine, I don’t worry so much about tomorrow because this moment right now demands all the emotion I can muster…and that’s happiness. She exudes it. So I will attempt to change what I can–the world around her. To value her, offer opportunities, expand its definition of beauty and success, and to celebrate the many things that make us different.

As for quality of life, I’ve got six years on this now. Our cuddly baby with the big blue eyes and milky skin grew into a girl, and we entered realms I used to worry about–public education, IEP meetings, bigger social settings and opportunities where her challenges are more prevalent and less cushioned by the bliss that is babyhood. But you know what? Life continues to get more beautiful, stretching my perspective, demanding growth and yet, without fail, offering more–more beauty, more love.

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I am so grateful to be living this story as her mom in an age where I can watch, listen and learn from the many others who share it with us.

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If you haven’t seen these, three online mama friends shared their stories in beautiful ways this month, and they made some incredible impact in the media: Amanda Booth and her little Micah, Oakley Peterson’s video of Welles’ story and little Sofia, self advocating like a boss. Your voice, your stories…the world needs them. It’s the most powerful advocacy tool we possess.

Happy Down Syndrome Awareness Month.

First and Last Impressions

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The hallway is empty now–bare bulletin boards that, just last week, were covered with colorful projects and pictures and sign-up sheets for the end-of-the-year party. The emptiness speaks of the fullness that’s been here the past nine months. This hallway is usually Main Street in the morning, a steady stream of in and out–parents leading the way and little ones following behind, dragging their tote bags, stopping in front of bulletin boards to find their hand print, their leaf project, their construction paper kite with the yellow yarn string.  There it is! The pink one! You made that? It’s beautiful!  Classroom drop-offs and hugs and Have-a-Great-Day!’s. Moms in yoga pants shuffling away to workouts and e-mail boxes, stopping outside the door to catch up–let’s do breakfast, let’s have a play date, let’s remember these preschool mornings forever.

Today it’s different. Classrooms have been cleaned out, projects sent home and the name tags that have personalized desks and job lists and cubbies have been removed to transition this sacred room for next year’s lucky students. The only last bits of this year reside at the table in the center of the room, covered in a summer table cloth, scattered with party treats. There are games, crafts, pizza and cookies; and I volley between Nella and Dash’s classrooms for events–a class photo picture frame craft and a montage slideshow to that ukulele version of Somewhere Over the Rainbow that always makes me cry. Today is no different.

I realize how much I truly love this place–for its smallness and coziness but mostly its greatness: behind each classroom door is a world leader. A preschool teacher who holds the key to an individual’s entire world of education with the power of a first impression. There will be many teachers that follow–classrooms, policies, tests, memories of projects and field trips, routines, and over the years a cumulative folder that grows fatter with reports. But there’s something about that very first classroom, that very first person who believed in you and knew you not by a student number–but by your first name. Your favorite book. The way you hold your pencil. How you learn. What grabs your attention. How it takes you a little more time but, man, how you shine when you’ve got it.

I learned about the power of a first impression working in health care. In college, I had a number of jobs at the hospital where my dad worked–a hospital well-known for its incredible patient satisfaction reviews. Every employee, from valet parking assistants to cardiac surgeons, went through extensive training to provide exceptional patient and visitor service–to recognize that walking into a hospital automatically presented vulnerability and to recognize and respond to that vulnerability with utmost attention for every single hospital guest. I see you. I know that you might be anxious or scared and that you don’t really want to be here. I’m here to make it better. Assure you, support you, offer you a warm blanket, listen to you, connect you to the right place that can help. As a patient transporter, I was paid a lot less than, say, a doctor. but I was often one of the first people patients encountered as I picked them up from waiting lounges and patient rooms to take them to their procedures. I remember being told–and believing–that I might be the most important person that patient interacted with; that my presence, words and care could be the ones that changed that person’s entire hospital experience into a comforting and calm one. I had the power of a first impression. We learned that patients, without even thinking about it, expect that doctors are licensed, nurses are trained and that machines that keep your heart beating are working properly, but what they judge you on–what their entire health care experience is truly about–comes down to being seen. Feeling valued, listened to, loved.

Education is a lot like health care in that sense. I assume and hope I can certainly expect that my children’s schools are up to code–that teachers are properly trained and text books are up to date.  But what their entire educational experience is truly about comes down to being seen. Feeling valued, listened to, loved. I was reminded of that recently by another teacher and a parent of a child with Down syndrome when I had IEP Tunnel Vision: the document. Make sure it covers everything. Focus on the plan. The wording. The accommodations. The legal rights.

“Remember,” she wrote me, “an IEP is a fluid document that can be changed at any time. What’s better than a great IEP is a great team of teachers behind your student.”

Like health care, I know that I can’t control everything and that little minds are a lot like little bodies. But as we prepare for Nella to go to kindergarten and enter a much bigger world of friends, teachers and experiences that will continue to shape her entire world of learning, I’m comforted by the foundation that’s been laid by a lasting first impression–this little school and a teacher who has taught my child that she is incredibly capable of very big things, and that she is valued, listened to and loved.

I hug her teacher one last time yesterday, unable to let go. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

We’re now in the bridge between two sides–the ground that launched Nella into the public school system and the side that will receive her next year. And this week, we venture into another first impression as the principal of the school she’ll attend next year takes her hand and leads her to the kindergarten classrooms so she can explore and get comfortable. “We cannot wait to have her here next year,” the principal assures me. “We’re ready for her, Kelle. She’s going to do great here. We love her already.” With tears, I hug her before we leave. “Thank you, thank you,” I whisper. “You’ve given me a gift. I’m not anxious anymore.”

I know there is much to be done across the country in the world of education, especially when it comes to special needs. I’m prepared for setbacks and frustrations in coming years and understand the power of advocacy and the importance of growth and change. It gets harder every year, I know, and as the gap between learning pace becomes more prevalent and she’s more aware of her differences, I’m expecting it won’t be easy. But right now I have two powerful first impressions that drive our next step and cushion our new beginning.

I wipe my tears after our last goodbye yesterday and take Nella and Dash’s hand as we make our last walk of the year down the empty hallway of the preschool. But wait–I forgot to take a picture. We turn around and pop back into the classroom one more time. “Can I get one last picture of you two together?” I ask her teacher.

“Of course,” she answers as she kneels down and hugs Nella. And just before I hit the button, Nella shifts her eyes to her teacher and I see it–the all powerful look. Her worth, reflected by the one who’s revealed it to her this year.

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Teachers, you hold the keys to our everything. How you see them is how they see themselves.

Later at home, I read the letter Nella’s teacher wrote to next year’s teacher and rifle through projects and reports from the last few weeks. “She is wise enough to know that she’s at a different level than her friends, but smart enough to know that she can fit in,” her teacher writes. “She has a wonderful stubborn streak that reminds you that she knows herself well and won’t settle for less. She is most comfortable being treated as equal and being given the same responsibilities as her friends.” Oh, to have your children seen for who they truly are.

For this little one, I’m so thankful that her launch has her sails full spread, pushed by the wind, guided by those who love her.

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