Happy Third Birthday, Sienna

My dearest Sienna,
Two has taught us so many lessons. Two is the year we learned that hard work, patience, and perseverance pay off. During your second year of life, you’ve spent 228 hours in therapy, working to achieve your goals. You are walking, communicating your needs, and soaring with your strengths.

You have so many strengths. You say hello to every person you see. You even make people that are truly determined to be in a bad mood (your dad) smile. You are the most intent, hardest working human being I’ve ever known. You never give up, and you refuse to accept help. You swat my hand away as I offer it to you for assistance. You are fiercely independent and that trait will serve you well in life. You are tough. You’ve been given vaccines and smiled at the nurses while it was happening. You are hilarious. We try so hard not to laugh when you throw things, but we fail often.

Two has taught us lessons about advocacy. We learned that acceptance is achieved through understanding. We visited hundreds of students teaching them all about you. We left each classroom knowing that we made a difference. The kids never wanted to say goodbye. We also learned the scope of advocacy work that needs to continue. We now know that we can positively affect legislation by lobbying for your rights. We will not allow people with Down syndrome to be marginalized. We will continue to fight to make sure you and your peers have the same rights as all citizens. We’ve only just begun.

Today, we arrive at three. Three brings us the departure of Early Intervention, a goodbye that is more difficult for your mom. We say goodbye to some amazing folks that have been in your life since you were six weeks old. They have been monumental on your journey and it’s hard closing that chapter. It’s also challenging entering this new stage….planning your education. Three is the beginning of preschool. It both worries and excites me. School has always been a looming fear, but if there is anything you’ve taught me, it’s to take it one day at a time.

I know that you’re going to continue to exceed expectations, prove that you’re capable of anything, and surprise the hell out of me. You’ve done it from the very minute I laid eyes on you. You’ve taught me that differences are what make life beautiful, and you baby girl, are the most beautiful three year old I have ever seen. I’ve learned more from you in these three years than I have in my whole life. I cannot wait to see what more you have to teach us. Thank you for choosing us.

Love always,

Mommy

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The Gut Punches

I cannot believe that tomorrow my baby will be three years old. It’s fitting that this week the Today Show aired a video of Shawn Johnson and her husband celebrating the news of their child not having Down syndrome. Three years ago, I remember anxiously awaiting the neonatologist’s opinion on whether or not Sienna had Down syndrome. I prayed that she didn’t, but I didn’t get the news Shawn and herhusband did. My baby did have Down syndrome.

Here’s what I want to say to the moms out there that got the same news I did. The moms sitting in hospital beds watching TV hoping for a distraction, but instead finding more pain while watching their morning news program. These painful moments are the hardest part of this journey. The casual use of the r word. Gut punch. A friend celebrating her normal genetics results. Gut punch. A curious child asking why your baby looks different. Gut punch. I’m not going to sugar coat it. These moments happen and they take your breath away. I promise you that you’ll get resilient.

The world doesn’t know that this life can be beautiful. They don’t know what they’re missing. To quote Shelby from Steel Magnolias, “I’d rather have 30 minutes of wonderful than a lifetime of nothing special.” Guess what? You’ve just been gifted a lifetime of special. You’re going to witness miracles every day and you will know that you’re witnessing them. I know it’s hard to see through the fog you’re in, but I promise you that one day you’ll be grateful for the perspective your child will give you. You’ll be grateful for the empathy your family will gain. You’ll learn how capable these kids of ours can be. Your dreams for your child don’t need to change. You’ll realize that the biggest obstacle in this life of ours is the outside world, and all that they don’t know. Try to give them grace. Try to educate them. You’re an advocate now. And when the outside world breaks you with one of these gut punches, you’ll quickly learn that there’s an army of moms behind you that do get it. We get it and we’re here for you.

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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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