Never underestimate a girl with Down Syndrome

Today I am a mix of pride and disappointment. Disappointed that we are not in the space I hoped. Not even in the place that I believe is best for Addie…I’m proud we have fought and done all we can. Now we wait on the system, walk in the process and believe for a miracle. As the Jonestribe we are growing in our ability to fall out of love with the destination and in love with this journey. … When you cannot understand Gods ways, you CAN trust his heart.”
 

In that moment I really did not see what was coming. Not for Addie, and not for me. I was standing on the substance of things hoped for, the evidence of what was not seen.

Just one year prior, in the eighth grade, Addie was given the privilege of touring many Highschools in our city. The goal was to check them out and discover what might be the best fit. We passed up the tour to San Diego High, TWICE. We were certain that this school had zero options that would meet Addie’s needs. I was convinced there were other programs in other locations that would see my daughter the way I do and come alongside in a way that we had so beautifully been accustomed to. You see, there is no ‘spectrum’ of Down Syndrome. You either have it, or you don’t. There are no two people with Down Syndrome who are alike. People with Down Syndrome are just people. Each with a diverse set of personalities, abilities, challenges and strengths. They are each unique individuals with equal rights. How the world views them, how academic structures see them and the mindset of the community’s culture varies as well. As her Mom, I’ve learned in her fifteen years, that some have a more possibility filled perspective than others. Some systems would like to categorize a student with Down Syndrome as not able to “keep up” and exclude them from the general education population. It is true it takes a student with Down Syndrome twice as much effort to vocalize their thoughts and ideas. This does not mean they have no thoughts or cannot share them. However, this alone often causes them to be disregarded in the classroom and social settings. It requires administrators, leaders and teachers to be patient, to make room and time for them to be a contributing member of the school society. This fact can leave kiddos, like my Addie to be dismissed and disregarded. An inclusion mindset says ALL people, regardless of their abilities, disabilities, or health care needs, have the right to be respected and appreciated as valuable members of their communities. Inclusion SECURES opportunities for students who are differently-abled to learn alongside their typically developing peers. Rightly or wrongly I did not believe this mindset existed at San Diego High.

I was wrong.

Or maybe I was right and we just got our miracle. The goal was not to win or lose. The goal was to see my daughter find a space where she could thrive. I did my part, But God showed off on his. For the majority of Addie’s life I have taken steps white knuckled. As I entered into our recent meeting to discuss the plan they saw fit for Addie, I let go of the grip and took a deep breathe with palms up. The team of twelve teachers, administrators, school counselors, psychologist, case worker and even nurses passed made statements that literally blew my mind.

“Addie she is a joy in class.”

“She is engaging and fully participates.”

“She’s capable, resilient, confident and quite social.”

“We see no reason for her to be placed anywhere other than the general education classroom. In fact, we think inclusion is best. What other ways can we help build bridges into the school community so Addie can best reach her goals and be more fully independent on this diploma bound track?”

Psalm 37:4 “Delight yourself in the LORD, and he will give you the desires of your heart.”

This verse root in my heart in a whole new way. It’s a passage I’ve grasped often as I have pursued faith. Control was no longer mine as it related to Addie’s highschool placement. There are laws and a system and necessary enrollment. Though panicked in moments, and heart struck with fear as I believed I was walking into the worse case scenario for Addie. I was also conflicted with my belief that God loved Addie more than even I did. This is when I rested in that assurance and I chose to take joy in that truth. Delight–not in an outcome, not in my preferred plan, but delight in a God who clearly knew more than me.

 
 

Addie has been in school for almost two months now. I’m happy to report she loves it. She is excelling her classes with all “B’s” and one “D” (but we’re working on that.) And here’s the crazy thing, I LOVE IT. This experience has taught me that there are lots of desires in my heart. Some are unpure, some are unwise. Psalm 37:4 doesn’t promise if you delight in God, then you get all the desires in your heart. It’s saying, take a deep breathe, turn your palms up and just enjoy Him. It’s in those moments the desires of our heart are shaped, are defined and created in accordance with Him. Which is far better than we can imagine. We will still do hard things. There will continue to be pain. But I said it on August 26 in my post…that is a comma. As you wait and sit in the goodness of God watch him shape your heart and shift your aspirations in a way that will blow your mind, for the GOOD.

Once again, a girl with Down Syndrome, that many would underestimate has given me new hope in the future of humanity. And increased my ability to see the heart of God.

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