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I Have A Secret, Self-Contained is Not A Dirty Word

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I was wrong. I always hated the word self-contained. It depicted a cage like atmosphere in my mind and while I had been in the school and seen self-contained, I thought I wanted inclusion. Always. Maybe even when it wasn't best for my daughter.

I guess I had hope. Hope that my child would stand with your children, learn with your children, be accepted by your children. It wasn't false hope. I thought we were here this year. Why? There was a homeroom. I thought because there was a homeroom there was inclusion. I read the words on her IEP but still my mind didn't allow me to believe it.

Inclusion was what I had dreamed of. I remember how it worked with my own kids. I remember my children coming home sharing stories of children they met, they knew, they fell in love with and there was no note of a disability. They were just friends. I wanted that too. For her. Selfishly, for me. And then there is mainstream. A child is included for homeroom, specials and even social studies and science. I remember watching my mother as she mainstreamed kids and how loving the typical kids were towards the children who were differently abled. It was beautiful. Hearts were softened. Lives were changed.

So that homeroom, those names...I thought that meant we were there. I thought it mean she was ready for more. More inclusion. You see, my daughter doesn't fit in any box and parents like myself are limited by a plan that I believe does more harm than good. We hold no typical child to a legal document that says how many minutes they can do one subject or another. There is no time limit on the number of visits to the school social worker or whomever is needed, whenever they are needed. Kids, like Seraphina are pigeon holed on an out of date document that doesn't allow for fluidity for the child. Still, our school has to put her there. Legally. I don't think any of them want to do it and so she is "self-contained". She's too disabled to go into mainstream schooling or inclusion but no matter what I seem to do I can't get my child to be considered "disabled" by our state. She's in limbo where she just doesn't fit. I send reports, records and notification of her struggles. Her weakness. The restraints, the letters from the doctor and the actual prescription papers our physician scrawled about her need for therapy. ABA, OT, Speech and for years, she's only gotten what they have at school not what I could give her at home.

This, its where I feel like I failed. Self-Contained but not disabled enough for services outside school.

And so I wallow in the sadness I can't seem to give her what she needs and get here to where she needs to be included.

Maybe I even failed the teachers not being able to give them the support they need for her at home.

In my Partners in Policymaking Class, we have been reviewing the IEP's our children have and I saw those words. In those moments, my vision blurred, tears fell and I wondered how I could have her spend time with her peers. I reeled. I sent emails, I called the school. I was angry. She loves peers. Always. She loves to be with children. I spent nearly 36 hours struggling, crying, being physically ill that "inclusion" wasn't in that IEP box. It reminded me, the system, the archaic practices are wrong. Slowly, I came out of it with the help of her team and realized those words, self-contained they aren't bad nor should be dreaded and it is okay to lament the fact that inclusion isn't right. For now. Those words are hard to see and when you have a vision for your children, being "self contained" is not the nicest way to say having their indivudal needs met.

In my Partners class, I have developed a passion for inclusion and also IEP's. I want to change IEP's because they pigeon hole the kids. They limit the teachers and even the administration. There are boxes that they have to fill in with minimal space, poor word choices and a legal document that often takes away from what the team actually wants to give the children. For me those dreaded words, "self contained" don't really say what they mean.

So, what does self-contained mean? For me? It means love. It means more care, concern and compassion that what a few words cannot explain. It means a teacher, giving her time, sitting at home, thinking of creative ways to teach what is necessary for a child to succeed in public education today. It means para professionals who are told not to fall in love but do. They love unconditionally even when times get tough. It means therapists that work, tirelessly to meet each child's needs even when the child can be pushing back and trying everything not to be loved. It means saying, "I will try" even when it seems to others they have exhausted all possibilities.

You see, I broke yesterday. I went into my conference with a plan. A plan to ask for complete inclusion. I want that. Its not time. I was reminded gently we have to go on "Serrie's time" and so instead of walking away defeated and deflated, I walked away not just love for my daughter but for the mother I am trying to be. I was told I am too hard on myself, and perhaps I am. I was met with eyes that suffered with me, that felt my pain me because they knew how much I hurt and I was met with the promise that we are a team, who all want the same thing. Inclusion. When its right for my child.

Parenting is hard. Very hard. Parenting a child with complex needs is even harder. Parenting a child you had dreams and visions for that you have to realize they may never attain is brutal but learning that, beginning to accept that, living that process is better when its done with people whom you love and they may just love you.

I am grateful for our team. I am hopeful for the future and even more so I feel empowered to work to make a change so that "self-contained" isn't a dirty word, so that we can learn to make a child centered IEP, so that all parents have a TEAM that truly loves their students and that we as families and educators are transparent.

I have a secret, self-contained isn't a dirty word. We, as parents need to work to make a change and realize that education isn't one size fits all, not just for kids who are disabled but for all children. Its also time to acknowledge IEP documents are somewhat archaic and outdated and that the legal documents someone thought were a good idea don't always mean what is best for the child at hand, their family and those serving them, growing them, helping them to succeed. One day, someday, I hope I will fully accept this journey and understand why we are walking it. I know it is making a difference in my life and for everyone in my family. I believe this journey is using our family for good. I also hope that perhaps as it uses our family we can also help us to make a difference for another parent, another child, someway, someday.

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