Stuck in IEPLand

Feeling stuck is one of the most miserable feelings in the world. Stuck in a bad school, stuck in a toxic relationship or friendship, stuck at work, or stuck dealing with a complex situation that has no exit.

I hate being stuck, and I think it’s one of the things that contributes to my anxiety, which has been much worse these last two-plus years. I have noticed it lately on the freeway. I can’t be stuck or not moving, or else I feel my body gets very upset with me. I am physically uncomfortable, and it’s like this thing takes over, and I have to talk myself out of whatever anxiety I’m experiencing. I take deep breaths, smell whatever essential oils I have nearby, and remind myself I’m finding an out. I’m pretty sure this is common for special needs families and those who have experienced trauma in many forms. PTSD is real. When this happens to me, I have to get off that freeway and find another way to my destination.

But, what happens when you can’t get off the freeway, or out of a school, or out of a toxic relationship? It’s something that can drive you to madness. It affects me a lot and I realize I always need options. Options make me feel safe and at peace. Moving makes me feel better. I see my son moving all day. Maybe this helps explain why? Is it autism, ADHD, or an impatience with boredom or being stuck? He doesn’t know why he moves but I know he needs to move all day long. I often wonder what job he will have so that he too can move and not feel so stuck.

I happen to be a special needs mother, so I really need my children’s teachers and schools. My children need their services so we can continue moving forward. When you’ve been working on behaviors with a child for ten years, you don’t want to go backwards. It’s got to be one of the worst feelings to see regression happen after all your painful work with a child with learning challenges.

These last two-plus years I realize more and more how stuck I am. I’m stuck in my children’s schools because even though they weren’t getting what they needed these past two years, I was stuck in IEPLand. I have to keep their IEPs active because they need services that support them. No services, no progress. Or is all that just in my head? Do I need to see it on paper to believe it? I don’t know the answer to that but maybe seeing it on a piece of paper or in a formal document feels better. So, the public school system has me cornered in some ways. I am stuck with them and they with us.

The IEP Maze reprinted with permission from © Cindy Deane 2016

I often dream about going to private schools, but each and every time I do I am told the same thing: “We don’t take kids like yours, we can’t help you if your kids have IEPs. We can’t honor those services or offer accommodations.” I get angry when I hear these words. It’s like someone is reminding me just how stuck I am. I can’t move. I can’t dream. I can’t leave. I am completely paralyzed and I just have to stay stuck. Why? Because my kids learn differently. Why is no one talking about this form of discrimination?

Related: Special Education: The Pros and Cons of Public vs. Private School

The maddening frustration parents like me feel is real. I meet them from time to time and we laugh/cry/whine about how hard it all is and what an unfair educational system we take part in. Why doesn’t anyone cry out about this? Why doesn’t anyone say, these kids deserve equity too? Why are there not more options for kids who learn differently? Our children are everything to us. They deserve a future and the same opportunities as children of color, or those from a lower socioeconomic status and those who have been traditionally discriminated against. They too deserve to be seen, heard and are a part of our communities. You can’t just isolate or exclude them because of their IEPs, can you?

I dream of starting my own school some days. I dream of using my teaching credential again and teaching and helping other families who feel stuck and paralyzed and so discouraged that they don’t do anything anymore because it’s a deep, long, lonely road they are on and it appears no one is there. But we are all there. We are just spread out and worn out and beat to a pulp and busy modeling good behaviors. We have to be happy and positive and teach our kids that they can succeed, they have to keep trying, and that everything can be learned even if it seems impossible today. We special needs families exist in great numbers and this injustice and our struggle will one day be highlighted and noticed. I keep silently screaming and I know one day someone will say, “I see and hear you.”

Until then, I will keep finding ways off freeways, shifting my plans and adapting to whatever road I have to pivot onto because I will learn to fly just to prove to my kids that we will make it. I will teach them persistence even when there is no road for you.

We will pave one up and make it everything we need it to be to get to the destination that welcomes us. And then we will welcome everyone because equity is really about everyone being welcomed and accommodated everywhere. No one is turned away no matter what they believe, what they can do and what little letters follow them from school to school.

About Author

Melanie K Milicevic is a graduate of UCLA and a former 5th grade teacher for the Los Angeles Unified School District. She worked mostly with second language learners and collaborated with special needs families to meet the unique needs of her students. She now advocates for her own special needs children and continues to work with schools to help educate them about ways to include children of all abilities in the classroom. Melanie is a passionate writer and has been published in Autism Parenting Magazine, Exceptional Needs Today and Special Needs Resource Foundation of San Diego. She lives in San Diego with her husband and two children.

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This post originally appeared on our September/October 2022 Magazine