The Magic of Siblings

“What do they see, Mom? She’s the cutest baby ever. Why are they staring?” Haley looks frustrated as I begin to buckle her into her booster seat.

“I don’t know, honey. They just see someone different and they stare because they don’t understand.” I kiss Haley on the cheek and I climb into the driver’s seat.

“I still don’t understand. Just because her eyes are shaped like almonds. Everyone’s eyes are shaped different.” Her brow furrows and she looks out the window staring.

How do I explain this? I love that she looks at her sister and only sees her sister. She doesn’t see Down syndrome. She sees Sienna.

However, this will be impossible to avoid. When I carried Sienna into Girl Scouts today, I thought nothing of it. Then, I noticed all the older kids. This was, most likely, their first experience with someone like Sienna. They couldn’t help themselves, but I also watched my observant little kindergartner look at the older kids curiously. Her eyes followed their stares to her sweet little sister, Sienna.

I decided in that moment, during this conversation with Haley in the car, that it was time. It was time to call the school and ask if I could do a Down Syndrome awareness presentation. This is Haley’s school and her friends will have to understand some of Sienna’s challenges.

The presentation was a huge success. We taught kindergarten through sixth grade and I now watch those same Girl Scouts stare at Sienna with affection. They no longer feel the need to investigate her. They understand her muscle tone challenges. They know they don’t have to be afraid of differences. They realize she is more alike than different.

Some days, I wish the whole world could see Sienna through Haley’s lens. I think of how I first stared at my newborn baby girl. I didn’t know a thing about Down syndrome. The fear paralyzed me. Haley’s lens changed all of that. No one in Sienna’s life accepted her as earnestly as Haley. She was the first one to accept her, all of her, while us adults still struggled. It happened the moment she laid eyes on her. The day they met was magical.

The magic of their love is our greatest blessing. It’s a gift we get to witness every day. I used to worry that Sienna would take attention and affection away from Haley. During those first few moments of learning Sienna’s diagnosis and the doctor portraying everything so negatively, I blamed myself. I remember these words going through my head over and over, “I am the reason this happened. I destroyed my family. Life will never be the same.” Over and over those words danced in my head. It’s hard admitting that. Of course, I couldn’t have been more wrong.

Everything changed the next day when Haley entered our hospital room. She didn’t hesitate to give her love away. Not from the second she saw her baby sister. Her joy filled the entire room. I began to realize I was looking at everything wrong. Sienna was a gift. She was just a baby. She was a beautiful baby that I had much to learn about, but there was nothing to fear. She was just as much our baby as Haley had been. She was a piece of all of us.

Haley gave me the strength to move forward. She saved me from my fear. As I immersed myself in this new world, I began to realize that siblings in the Down Syndrome community were grateful. Sienna would make our life better. She would make us better people. Haley showed me that. Haley shows me that every day. She was Sienna’s first advocate.

Their bond continues to amaze me. They have an unbreakable connection that I cannot penetrate. Their emotions are one in the same. When one is sick, the other is depressed. When one is hurt, the other melts down in grief. When one is happy, the laughter fills our home. Haley is the most consistent feature in Sienna’s life. I wanted to pay homage to their love for each other.

I made this video as a tribute to them and all rockin’ siblings in the Down Syndrome community. What a gift we have been given!

 

 

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Include Me

When I ask you to play, play with me.
When I’m building a tower, join me.
When I’m singing a song, sing with me.
When we’re eating a snack, share with me.
When I’m being silly, be silly with me.
When we’re together, include me.

Many of you know we had Sienna’s first IEP meeting last week. Our goal for her education, this upcoming year, is to learn social skills and make friends. It’s really that simple. She’ll be in school two days per week.

After her IEP meeting and evaluation, we were told that she qualifies for speech, PT, OT, and developmental therapy. They will come to her school. Some of them will integrate into the classroom. Others will pull her out to work. I’m glad that she qualifies, because she deserves those services. We live in Pennsylvania. It’s one of the best states in the country to have a child with a disability, and that is not something that’s lost on me. Our Medicaid services allow Sienna to continue outpatient therapies at the Children’s Institute outside of school time. Next year, she’ll still receive 4 therapies per week from them.

Now, I have to decide what’s best for her. Do I want these additional therapists coming in and out of her classroom during what’s already a short week of school? Am I holding her back by not using the therapies? Am I holding her back from important social time by agreeing to these therapies? It’s been weighing on me. I have time to decide, to process the pros and cons.

It’s easy to get lost in the IEP process. You watch your child being directed to perform tasks. You have 4 people asking you questions about your child….Does she walk backwards? Does she know the names of articles of clothing? Is she able to go up and down steps? How does she hold a pencil? Can she turn a page in a book? Does she isolate her index finger?

It’s easy to lose track of that goal you mentioned in the beginning of your meeting….social skills and making friends. For our family, that’s what preschool has always been. It’s a place to play and make friends. Down syndrome doesn’t change that.

This picture is Sienna and one of her buddies. They’ve known each other their whole lives, and they start preschool together this fall. I watched them play yesterday and it gave me all the feels. It grounded me and reminded me that this is what it’s about. This is what she deserves. She deserves to share snacks, to giggle and be mischievous, and to play with her pals. I’m still not sure how it will work out, but I’ll make damn sure her experience at school is everything that she deserves. Her buddy reminded me of that yesterday.

It’s easy to get lost in Down syndrome. It’s easy to forget that at the end of the day, Sienna’s just a kid that wants to play with her friends, whether or not she can hold a crayon, use a utensil, or how many words she has. At the end of the day, she’s just a kid starting preschool. #justakid #inclusion #downsyndrome #actuallyshecan #presumecompetence #theluckyfew #scootoverandmakesomeroom

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The Beginning of our IEP Journey

Sienna runs from one side of the room to the other, shouting loudly, while chasing her sister. They both erupt in laughter. I stare at them and observe Sienna. The looming pressure hits me like a truck.

How can this document capture her personality? How can I possibly predict her needs? I reflect on all the changes that have occurred over the past year. I sigh. Even more daunting is the thought that this is only the beginning of her educational journey. Our first IEP meeting.

What the heck is an IEP? I had never heard that terminology until I entered this world. This world is full of acronyms…..IEP, PT, ST, SLP, OT, AIU, etc. It can overwhelm you. An IEP is an Individualized Education Plan. Sienna will need one every year. This 20+ page legal document is a requirement every year. We have to make her needs clear, and we have to spell out the accommodations that she will require.

For instance, we found out that Sienna is aspirating not so long ago. All of her liquids are thickened. During snack time, this will be crucial. While the other toddlers in her class are drinking water or milk, Sienna will need juice. Sienna won’t drink water. It spills out of her mouth. The taste of juice wakes up her mouth and stimulates her muscles to drink. I know that sounds crazy, but it is our reality. I have tried thousands of times to get this child to drink water. So, I am sure it will seem unfair to a bunch of 2-3 year olds that Sienna gets juice while they drink milk or water.

What else will she need? Tomorrow, she will be evaluated by strangers. A speech therapist, an occupational therapist, and a physical therapist will all make determinations about the services she will receive for the next year. They will make this determination after one brief meeting. Since Sienna cannot make her needs clear, that’s my job as her advocate. Again, the pressure looms.

Tomorrow, we will say goodbye to the folks from Early Intervention. Most of them have been with us since Sienna was 6 weeks old. On her third birthday, our professional relationship with them will be terminated. It’s impossible to understand the emotional connection I have with some of these people. They were there when I wasn’t ready to accept the diagnosis. They have watched me grow in advocacy. They have seen Sienna overcome countless challenges.

This is just another part of this journey that others don’t think about. I find myself using the acronym IEP around friends and family. I forget that they don’t know what that is. Most of them have typically developing children. They have never found themselves in this situation. Their children don’t require exceptions to deal with behavior, health & safety, transitions, and learning.

The only thing that feels within my control right now is spelling out her needs. I create her one page profile sheet. I spell out her strengths, weaknesses, and what works for her. Keep in mind that she is only two years old.

As I feel the pressure, a little voice in the back of my head reminds me that she is going to the same school Haley attended. She will be surrounded by the same love, support, and inclusion that nurtured Haley into the beautiful soul that she is. This school will do whatever we need to make sure that Sienna is safe, happy, and that she flourishes. It’s going to be okay. I can relax knowing that for the next 3 years that is our future, but just like saying goodbye to EI, I know that we will have another transition in three years. At the end of the day, our family is the only permanent fixture on this journey. We will never stop advocating. Tomorrow is only the beginning.

Sienna’s one page profile. For information on how to make your own, email me at shannonstriner@gmail.com
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