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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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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