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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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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