Sunday, October 09, 2016

(Not) Welcomed, (Not) Included in Virginia

This year, like many other mothers, I attended an Open House at my son's school before the first day of classes. Even though my son was entering 6th grade at our local middle school, this was a novel thing for me to do because until this year he had been home schooled. I approached the evening with some trepidation, not quite sure what to expect. Another boy in our neighborhood, one year older, volunteered to go with us. He said he would show us around, help us figure out how to navigate from class to class, help us find my son's locker, and introduce him to the teachers. I gratefully accepted.

When we arrived at the school there was a little bit of mix-up with my son's schedule that was straightened out in the guidance office. While we waited, a very friendly counselor asked my son if he had any questions and made a real effort to help him feel at ease. She talked to him about the cross-country program and helped him think about which instrument he might like to play in the band. She told him about the school play and suggested he either try out for a part or help behind the scenes if he was interested.

Later, I followed my son and our neighbor through the building and watched as teachers and administrators stood in the hall greeting kids by name, giving them high-fives and asking about their summers. There was a jovial, welcoming energy throughout the school and I could see how it felt like a little community. Kids who hadn't seen each other all summer gathered in small groups catching up and looking at their schedules to find out who would be in which classes together. Parents and teachers greeted each other warmly and talked about the year ahead. Without a doubt, I knew my son would be welcomed here. I had worried about how he would manage in a classroom environment after having been unschooled for so long, but the teachers seemed engaging and eager for my son to join their classrooms. They told me about all the fun activities they had in store for their students. They spoke of field trips. They set my mind at ease when they described the wide diversity of students in their classes which include a large number of immigrants and refugees in our area. I began to see how my son might fit in and thrive here. I could see how he would be a part of something, how he would begin to forge the relationships that would imbue the next years of his life with richness and texture.

You might think that I left that event at the school feeling relieved and excited. And, in a small way, I did. But the greater emotions were sadness and grief.

You see, this was not my first experience in this school. My older child, who has a disability, had attended this school for nearly three years. And during that time no one had ever asked him if he would like to join the band or what instrument he might like to play. No one ever suggested that he might participate in an after school activity. They never asked if he might enjoy helping with a play or, for that matter, even attending one. He didn't have a locker. He never once stood in a group of his peers in the hallway. There were no field trips or school dances unless I consented to go along as his chaperone.

Every interaction we had with teachers took place inside a conference room where faces were veiled with trepidation, where all the things my son couldn't do were considered barriers to even the most basic participation.

Over the three years in which my son was enrolled in this very same school, I spent countless hours meeting with teachers and administrators advocating on his behalf. I spent evenings and weekends adapting and modifying coursework. I bought apps that would allow him to participate in algebra and Spanish, loaded them onto his communication device, and taught his teachers how to use them. I lobbied at the district level for more teacher training so that they could get the support they needed.  I participated in our division's new Strategic Planning Group for Inclusive Education.

I spent so much time advocating for my son and other children with disabilities that one principal joked that he thought I worked for the school district.

After three years at this school my son graduated from eighth grade, ready to move on to the high school, having only completed three classes. And still, I counted our time there as a success. I believed that the lessons his team had learned about the supports needed to help him be successful in the general education classroom were the building blocks for a more rigorous education.

It wasn't until my younger son started school that I realized how dismally we had all failed.

I knew, of course, that inclusion was about more than being able to participate in the general education classroom, but until I walked those same hallways with my son who does not have a disability, I didn't realize how much my other child had been denied a sense of belonging.  I didn't realize how much he had missed out on by not walking the same hallways with his peers, how few people knew his name or anything about him. Advocating for extracurricular activities and programs felt like just one more hurdle to overcome and I didn't realize what I let go of when I thought just being allowed to attend a science or math class was enough. The promise of relationships and experiences, of a community of support, wasn't just denied to my son with a disability, it was denied to our whole family.

I had no idea how much we were excluded until my child without a disability was welcomed so openly.

I had no idea how much we were on the outside until I saw what it looked like from the inside.

My oldest son is now enrolled at the High School, although 8 weeks into the school year he has yet to attend a single class.  He missed out on Diversity Day when students and staff wore the clothing representing the many culture represented at the school. We got the pictures in an email. He didn't get the chance to go to the homecoming dance or participate in any of the related school activities. He didn't get his picture taken for the yearbook.

Except for a few administrators, nobody at the school knows his name or that he should be in school and isn't. He isn't missed.

It's difficult to be missed, after all, when you were never included in the first place.  And that is a grievous failure for us all.

17 comments:

  1. You absolutely will make yourself crazy with grief if you allow yourself to focus on what is missing in your or your child's life rather than on what you have. It sounds like you were able to gain alot for both your sons...but there is no way to protect our children (or ourselves) from normal social pain. It comes with being human. Hope they both have great years. And you too. http://gretchenrubin.com/happiness_project/2016/07/little-happier-children-social/

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    1. Thanks taking the time to comment and the link to Gretchen Rubin, whom I admire. But I don't agree that recognizing systemic exclusion constitutes "normal social pain". None of us should accept that fewer opportunities to build an enriched life are offered to our children with disabilities.

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    2. Christine, you handled that comment graciously. It's a challenge to put our thoughts and sorrows out in the Internet world - only to have them organized and belittled. Feedback like that reminds me of those well-intended friends that tell you "everything is going to be ok" or "everything happens for a reason." That being said, your noticing the gap in your sons' experiences is what will add to the strength of your advocacy... Thank you for sharing this. As a mom of four girls -two typically developing and two severely disabled, I believe your story to be authentic and sadly more common than we think. It is important to share this truth, so that we can create a stronger step forward. Just because something is human doesn't mean it is good. Keep on keeping on. Sara Pot

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    3. I agree with Christine. She has a right to grief. But most importantly, be proud that all her efforts are leading to changes in our schools. If your son/daughter would have had the opportunity through inclusion and he/she was not given the option, then maybe it would be easier for you to understand her point of view. My son with ASD was in very self-contained classes in elementary school, somewhat less self contained in Middle School. Finally now that he is 17 he is being included. But he will not catch up academically or socially by graduation all the opportunities he lost. Even though we as parents were very involved with the many, sometimes frustrating meetings we had to attend to make progress and to demand inclusion. I am very happy that it appears that more inclusion is now being addressed and our efforts as parents will benefit some of the children in the future.

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    4. Thank you so much for your comment Sara! It is hard to share these things that we feel so deeply. I never in a million years thought I would be engaged in this kind of advocacy work but through it I hear stories and meet people that remind me that it is so important. And that our struggles are shared by many.

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    5. Ding-Lynn, I feel so much the same way: I'm not sure how much all of this advocacy will help my son. I wish I had started when he was much younger but I just didn't know!! But it gives me some measure of peace to know that other children will benefit. I hope your son is doing well!!

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    6. Christine, that is the problem. We, as parents trusted the IEP Team without actually knowing what we were being offered. When they used to tell me he was getting 2 "units" of time of general MATH, 5 "units of speech therapy", or 1 "unit" of physical therapy a week, I did not realize that was about 10 minutes per unit that he was getting these services. So he was getting about 3-4 hours out of his "assigned" class. The other 30 hours a week in school he was in a very self contained MIPA class with no peer models. He did not eat lunch in the cafeteria, he could not participate in the clubs, they did teach him very little reading since more than 1/2 the class was non-verbal and the 6 kids in the class ranged from 5-12 years old, with different behaviors and bad language. My child is extremely good at mimicking, so he mimicked all the behaviors and bad language.

      During the 1 hour IEP meetings (I demanded mine would last 1 1/2 hour or two at least), most of the time the teachers read their reports, and by the time our time came to put our input, the time already was exhausted. Again, without training on IEPs, we did not know how to prepare or what to say. After 11 years of practice, I get ready ahead of time for those meetings, bring samples of my child's work, insist they provide the information ahead of time, and tell them that the Special Education person needs to read the information ahead of the meeting so he/she can be knowledgeable of my child. Now is the time to pass the baton to my son. He is doing well, advocating for himself, and becoming independent; but it certainly continues to be an uphill battle for both him, his sisters, and myself.

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  3. Tina2va11:20 PM

    Thanks for leading the way. Maybe one day the principals, teachers, and other parents will realize that inclusion benefits them more than us. Sad to look around and see no one different - what's lost when everyone is the same?

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    1. Tina2va, I agree. Someone recently said to me that spaces that don't include the full diversity of humanity are impoverished spaces. I love this!!

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    2. Thank you so much for sharing. I relate to many of the things you said. My daughter is now 33. Key to my being a good mom to her is celebrating the large and small things she has learned to do and the inclusion she increasingly experiences. Just as important for me is to identify and grieve/then let go, the past,the continued struggles by persons with disBilities to get adequate health care, jobs or day programs or support in the justice system if assualted/other. The grieving allows me to continue being a strong advocate.

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    3. Rowena, you are exactly right. I'm learning to look at my emotions -- like grief and anger -- as a beginning and not necessarily just the result or the outcome. Those feelings help guide and strengthen me. I'm glad to hear your daughter has you in her court!!

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    4. Thanks, We are from Virginia as well in Loudoun County. In the past I supervised adults 16 years and up with all abilities as they did a varity of adapted recreation activities. Each participant brought positive value to the group experience no matter what their cognitive level, ability to speak or hear or physical disability. I learned again of the value that each and every one of us bring to this world.

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  4. Anonymous3:21 PM

    This was heartbreaking to read. If I may ask , as a first-time visitor to your blog, why isn't your oldest son in classes?

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    1. Hi Anonymous! The difficulty for us stemmed with changing from the middle school to the high school, a real lack of meaningful planning, and the abrupt loss of his communication support person prior to the first day of school. ... there's a host of reason's but unfortunately it's just part of the same old story.

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  5. Send them to a "Special" school and stop forcing the rest of our children to accept your bad choices. With over population such a problem there is no excuse for bringing a deficient child into this world. It's hard enough as it is, now you add not being to care for ones self to the list. Whom is going to take care of that child after you are gone? Tax payers?

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