A grain of sand.

I often feel like a grain of sand. Sand is everywhere. Sand is in every town, state, and continent. One grain of sand could be a nuisance. One grain of sand may not be noticed. It is easy to displace one grain of sand. One grain of sand can be nothing. …Unless you are the grain of sand.

When one grain of sand happens to see another and nature allows them to roll towards each other, they are not alone. We all know what happens when a bunch of sand collects. It becomes noticeable and you take effort to brush it back to where you think it belongs. A bunch of sand could be… annoying. But a lot of sand, together, could create something beautiful. A whole lotta sand could be a beach or create a foundation for soil. You cannot have a beach or grow without single grains of sand.

I am going to start telling our story because I need to find other grains of sand. I feel in my heart that there are many other like-minded people who want to advocate. People are always interested, listen and comment how passionate I am for change. But people are scared too. They are scared that their advocacy will cause backlash for the one they are trying to help. I understand that. We have experienced the back lash and abuse. I have spent many nights forcing my emotions into a compartment so I can continue to advocate. There is only so much energy in a day. My emotional compartment became a cave that opened into an endless ocean. The people who listened and encouraged me became a bright point. They became hope. The bright points of hope became constellations. When the seas became tidal waves, I could close my eyes, see my constellations, and find home. I could find my way back to him, so I could be Mom again.

Our son Jack is on the Autism Spectrum and is diagnosed with Childhood Verbal Apraxia. He has a speech language impairment as well. We have battled school districts for over 9 years, and he still does not have a meaningful communication system. Currently the school district we are in cannot provide any per session pull outs or adapted education materials with state education standards. Curriculum is the idea that you want to get somewhere and then you decide what mode of travel you will use. Education standards are the train map, so you know where you are going, where you have been and how you are going to get there. Our school district will not provide a meaningful communication system nor education standards they have used or will use for our 13-year-old son. Typical students are provided with viable and guaranteed curriculum. Without clear curriculum, education standards, and adapted materials, how would our son spend his entire school day? We have no idea either.

During the 9-year education struggle, I have had to learn state and Federal education code so I could use it during official meetings. I have had to learn how to advocate for him in the most effective and least abrasive way. Advocating for him meant I had to compartmentalize who and how I was. I couldn’t have feelings about fighting the system or I would have just been a puddle of tears. I had to endure years of bullying and abuse. In most states, if anyone uses “unkind” language, wording then the system can dismiss whatever issue you bring up because you are “abusive”. The “system” had the clear advantage and the powers that be used it to poke my bear so I would go away. Most days I felt like a grain of sand. I was never sure where we would end up and if anyone would help us make a change.

In our journey I chose kindness. I chose to raise someone up when I could. I never cut anyone off at the knees. I could have sent them home crying, but I didn’t. I chose kindness because when I tell our son his story, I don’t want to have to edit it. I do not want to lie. I do not need to lie. I don’t want him to lie. I don’t want him to feel like lying is an option to protect or be respected in our eyes. We all make mistakes. If we are wise, we learn from them. When the people running the system chose to be small and hurtful to us, we made a choice to see them as human beings doing their best with what they have. We can choose the lens we look through.

My hope for this blog is to be an outline for others to benefit from all that we have learned from the special needs education world. When we first started researching and looking for information, there was little available to us. What I needed was to read facts, laws, codes and stories so I could form perspective. All our pain, our time and our efforts would be useless if they only stay with us, sharing is what gives us strength. Every event happened. All events are truth backed with emails, references, and education code. When we learn from each other we have more tools to advocate with. I have made a choice to change all the names. I am changing them not because a public employee deserves privacy, but because they don’t get to be a martyr in our story.

I am scared. I’m scared that others will criticize me and try to discredit me. I am scared people will seek us out to hurt or troll us just because they can. But I’m more scared of the regret I will have if I don’t try to find community. I am not brave because I am. I am brave so he will not live afraid. I don’t look for the good because I am optimistic. I look for the good so he will know how to see good in others. I am not writing this for glory. I write for him to find his people and a place at the table when we are gone.

Today, we may be a single grain of sand. Today we might be alone. But some day it might be different because a beautiful beach is made of many, many grains of sand, we just need to find and learn from each other. Once we know we are not alone, we can find strength together. If you don’t feel like a grain of sand, then try to be a light. Be the hope or encouraging word that someone needs in their heart. You can be a star in the constellation they use to guide their way home.

After all, we’re just walking each other home.

-Suzie D. (Jack’s Mom)