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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The Privilege of Music

When I reflect back on my life experiences and think of some of my biggest joys and most devastating heartbreaks, I remember turning to one thing to celebrate, and at times immerse myself in grief. Music.

Music is an intrinsic part of all of us. The range of emotions that can be found in a song help us process our feelings. Rhythm and pulse can be found in our heartbeat, and our breathing and movement. Melody is created in our laughing, crying, screaming, or singing. Our feelings can be processed and held within the rhythms and harmonies of different musical styles. These intimate connections with music remain despite our abilities intellectually or physically, and are not dependent on musical training.

Because of this, it makes sense that music therapy would offer numerous opportunities to teach children an array of things. As babies, when Sienna or Haley were upset or struggled to communicate their feelings, I turned to music. It has been the number one tool in my parenting kit.

As Sienna evolved in her therapeutic needs, I realized that I should be capitalizing on her love of music. When she is struggling to grasp a concept, I find a way to make it into a song and inevitably, she grasps the concept over time. She pays more attention. She smiles and listens. It garners her focus. For this reason, I chose to start weekly music therapy, despite the fact that our insurance carrier and Medicaid do not see the value in it. We pay out of pocket for a therapist to come to our home on a weekly basis. We started these sessions in March. Since then, Sienna’s vocabulary has expanded. The clarity of her speech has been enhanced. She is starting to understand colors. She is picking up various objects and turning them into musical instruments. I can understand every word she says while singing.

Music therapists can use music to help with a wide variety of needs ranging from learning difficulties, mental illness, abuse, stress, or illness. Music therapy can support the development of children in many ways. Music, in all its forms, can provide expression and pleasure at all ages. There is a great opportunity to use music in a planned way to help children and adults to improve their spoken language.

 

Yet, most insurance companies will not approve it. Our federal government aims to take services away from our children, when truly we should be adding services. Medicaid is on the verge of change. It’s looming. Every day, I wake up terrified of what the news will say about the programs my daughter utilizes. I watch her grow developmentally, with the aid of her services. When she is an adult, she will be a valuable member of society. She will contribute and I will make sure of that. I will fight and advocate to get her everything she needs, but I need your help. I need to spread this message to our senators, congressmen and women, and our political leaders.It benefits us all to give children the services they need now, so that they won’t be dependent on the government as they mature. I hope that this is something we can all agree on, regardless of political affiliations. Children are our future, and they should be given the resources they need. I realize that I come from a place of privilege and that is the reason that Sienna is succeeding. Not all families are that lucky.

For local families interested, we currently work with Allison Broaddrick of Three Rivers Music Therapy. She is a fantastic resource. If you are interested in learning more about what she offers, reach out to me and I will share her contact information with you.

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