Saturday, June 14, 2014


I don't even know what to say about what has occurred over the past two days. My last post seems to have hit a nerve.

I want to thank you for your support. Knowing that Jack and I have you in my corner makes me feel so very good. Thank you for commenting on that last post and sharing it and reminding me that it is important to tell these stories so more people hopefully hear, really hear, how important it is to include all students.

The thing that kills me is that, as a result of that post, I have been hearing story after story of similar exclusions happening to special education students all over the country. Every time someone sent a mean comment or told me that what happened wasn't a big deal, someone else sent me a story of a brokenhearted kid who had been left out of something as simple but important to them as a photo.

There were the kids who were left out of their school yearbooks. There were the kids whose school forgot to read their names at their elementary school graduation.There were the kids who didn't get included in the second grade end-of-year activities. There was the kiddo who was excluded from his first grade class photo. There were more stories, but you get the idea.

I sent Jack's principal an email on Friday morning. It seemed like the right thing to do. In the email, I told her why I wrote the post, my intention being to highlight how much it matters to include every student in all aspects of student life. I told her how, in her position at a school that houses an autism program, she had a very powerful opportunity to not just make sure that all students are included, but to make sure that the typical students know that all students are valued and counted as well.

She responded to my email with a phone call and we talked, not just about the bulletin board, but about the atmosphere of inclusion and whether or not special education students and parents feel it at Sligo Creek. I can't speak for everyone. I'm sure some do. I can speak for some. Even though they love the Asperger's program, they don't feel like a part of the school community.

The principal disputes the timeline as I laid it out in my post. She says the the photos were up before my friend posted the photo she took. My friend remains adamant that the photos were not up at that time. I know my friend and I know she was looking for her daughter's photo. I believe my friend. Her daughter stood with her as she posted the photo. I imagine that if her photo were already up, that bright, strong-minded fifth grader would have mentioned it to her mom. Some of you will believe the principal. That's fine. There's some fuzzy blame about not getting messages and front office staff. I can't know for sure what happened, but my friend is not a person who just makes things up. I trust her account.

The principal told me how our kids were left out in the first place. The photos were taken at lunchtime in the cafeteria, a time when my son and his classmates are in their classroom. Their photos weren't taken because they weren't there. Innocent oversight, sure.

But, I would posit that when you forget a classroom of kids just because they are not in the room, you are not fostering that atmosphere of inclusion.

To her credit, the principal sounded horrified about the whole situation. Part of that horror could be that everyone from the superintendent on down has evidently been in contact with her about this. To her credit, she apologized to me. Not to her credit, as of Friday night, she had not contacted my friend to apologize.

The principal told me stories of helping and standing up for the students in the autism program individually that I hope are accurate, because they are lovely. They are also the right thing to do and in most cases, legally required of a principal. She told me about her own disabled daughter and how it hurts her that people would think she doesn't support students with disabilities. I didn't mention this on the phone, but I have written here about some of the wonderful school-wide inclusion that I have seen at Sligo Creek.

She was very nice on the phone. She sounded very genuine. I don't think she's a bad person. Being a principal must be a very difficult job and I'm sure it's frustrating to be called out so publicly for one thing. I understood her position. But then I thought about how I had felt at the school for the past two years.

I really do love Jack's program. I feel very at home and welcomed by the Asperger's program staff and the school paraeducators and one of the general education teachers. But I haven't felt like a full, participating member of the school community

I needed to tell her that.

I hate phones. I hate confrontation. I was shaking as I spoke to the her. But I knew that I had to speak up. I am so glad that you are doing these things, I told her. (I am.) I hope that the students in the Asperger's program don't feel the lack of inclusion that some of the parents feel, because that is what matters, I told her. But, I said, I am not the only parent who feels this way. There are a bunch of us who feel as if we don't quite belong and aren't welcomed the way the rest of the school families are.

I reminded her about how last year a general education parent and I had tried for months to get a meeting with her to discuss doing some autism education for the general education kids who go to school alongside our autistic kiddos. I reminded her that the other parent works in autism research and that I have done autism education with kids—and have Asperger's myself. I reminded her that we emailed over and over and when that didn't work, when a meeting had been scheduled and then canceled just an hour beforehand, we submitted a written proposal that she never commented on. I told her how we eventually just gave up.

I told her about how my family had tried to attend the end-of-the-year social just last week, which was completely unstructured and held in a parking lot. I told her that my son couldn't participate without a common activity, even playground equipment, to start an interaction. I told her how my son, who has been at the school for two years, ended up just walking in circles. I didn't see a single student come up to him to say hi. No one was mean. No one objected to his presence. But no one welcomed him either.

There are more examples. I gave some to the principal. Some I did not. I don't need to go into them now. Probably any parent of a child with a disability has similar experiences. Probably any person with a disability has similar examples.

I am school volunteer person. This year I co-chaired large events at each of my other sons' schools. At my youngest son's elementary school, people used to ask if I worked there because I was there so often. I served on the PTA board there for the past three years and for the past two, have had weekly or near weekly volunteer jobs there. I volunteered last year at Jack's school for a couple of class parties and with some wall decorations for a big 4th grade project. The parents were nice. But I could never quite shake the feeling of "other." I know that's not all the school's fault. Part of it is my own baggage. But there are definitely ways to be more inclusive of our families, many of whom come in to the school in 3rd or 4th or 5th grade, after most of the families have been together since kindergarten.

It sounds like the principal will be making an effort at more inclusion. She contacted a family who had had some inclusion concerns of their own and suggested that they meet over the summer to discuss how to make the school more inclusive. She has told me that she'd like to schedule a meeting with me and the other mom who wanted to speak to her about autism education. I'm thrilled to hear these things. I hope they really do come to fruition. I am sad that it took a firestorm of controversy to make it happen.

At the end of the day, however, we have to remember that our kids weren't included because they weren't in the room when the camera showed up. We have to remember that my friend went to the office multiple times and was put off, fuzzy blame about who knew what and who was told when be damned. My friend followed the chain of command in informing the secretary and had extremely valid reasons for not contacting the principal about this particular issue (those reasons being not mine to share). The school was informed of their mistake and it took them weeks to fix it. That matters to the kids who walked by the bulletin board every day.

You should know that my friend works so hard at that school. The reason she knows the photo situation was going on for so long was because she was at the school regularly. She's a squeaky wheel, my friend, always speaking up for our kids. Part of speaking up as a parent of a special education child includes fear of reprisals—not for us, but for our kids. That is the culture of special education in this county, in this country. I panicked a little when this post started making the rounds, for that very reason. My friend is extremely brave to speak her mind the way she does and I am so glad that I could amplify her voice this one time.

I have hope that maybe this will start a conversation at Sligo Creek. I hope that the principal can put aside feeling hurt and listen to the kids and parents who are at the school now and in the future. I hope that the angry parents who responded on my last post telling me this was no big deal can look past their anger and understand that this isn't about parent egos—it's about young kids and their self esteem. I hope that all the parents at the school can continue to help their kids grow into people who include all people every time. I hope that I can put aside my own hurt and anger and meaningfully contribute my voice to the conversation.

I hope that this fundamental message can spread: Every person has intrinsic value and deserves to be included as a human right. Remember what my son wrote in his essay: "I would not be forgotten." No child should have to feel that they could be forgotten at their school.

To each of your kids who has had this happen to them, tell them that that they are important. Tell them that they are valued. Tell them that they are not less than or an afterthought. Tell them that they should be included because they are worth including, not just because it's the right thing to do. Tell them that we love them and that we SEE them. 

Tell them that they are superstars.


  1. Thank you so much for your follow up with the principal. I truly hope this will pave the way for me and the other parents to start some exciting inclusion work next year. I can only imagine the anxiety you must have felt when talking with her about this topic -- I know I would have been shaking -- but please know that I, and many of the HFA parents, really, truly appreciate you representing us and opening up this line of communication. Have a great summer, Jean.

  2. If you are taking pictures in a cafeteria, and know a class doesn't eat there. be sure to go to where they DO eat and get them taken. What about kids who were sick that day? Were they included on the wall? That's a no-go excuse.

    You keep rocking, Stimey. People need to understand that this IS important. This IS a big deal. Silent discrimination is more insidious, and requires more voice to make it stop. This isn't just about Jack, but about the entire school community, and how those children are being raised to value- or ignore- others. Parents who think this isn't important? Imagine if it was YOUR child being left out, excluded, silently, consistently. How would your child feel?

  3. You are just really Awesome!!!!!

  4. I was left out of all my hs senior activities because I went to an alt school. I will never send my kids to that hs that left me out.

  5. Please tell your friend I believe her.
    And thank her for not backing down.
    It's been a few years since we have organized a demonstration on behalf of our kids (google Zvi Greismann) but the issue of respect for our children still surfaces in MCPS and it should have been resolved years ago. Thanks to your friend for moving us forward. And to you.

  6. Wow. No words for all that you have written. You are simply amazing. Keep it up!!!

  7. I hear you and I support you. Don't ever give up. Don't ever be silent. We, as parents to children who have needs or delays that aren't developmentally typical, must be brave and fill in the gaps. I believe without a doubt that my calling/purpose in life is to advocate, encourage and be present for my daughter and son as they grow up with their delays & struggles. Jeremiah 29:11

  8. VERY happy you and the principal were able to speak before the weekend, despite how stressful. It sounds like a constructive dialog was started or renewed.
    Then, wondering what the MoCo school board is doing to promote inclusion, I searched their site and found many hits, including this: "Special Education is a Service—Not a Place." It's possible some of the principles stated have evolved since 2001. Anyway, the document mentions a Task Force on Inclusive Education. If this doesn't still exist, maybe it should. I promise I am not asking you to lead it, you know, in your spare time. :)
    Is there a reason that all the kids don't have lunch together - maybe schedule conflicts? Or, maybe lunchtime is stressful enough already, for all tweens. [Where is my table?! Why don't I have cooler clothes? Does my hair look ok? Why oh why did I bring my advanced algebra book TO LUNCH?]
    Sorry, having a bit of a bad memory there. I don't mean to diminish the actual discussion here. I'm not known for appropriate humor. :)
    Anyway - hang in there, and maybe recommend a task force plus teacher & admin awareness education around inclusion.

  9. Oh, I just re-read your post, and you already HAVE recommended more education / awareness. Hope they follow through, and if not then maybe the board would.
    They seem to have good intentions, like with this:
    Also, happy almost-summer!

  10. I am so glad the principal responded to you. So many times they continue to ignore it. I am so proud of you for dealing with this confrontation head on. Believe me, I am not a confrontational person either but having a child with a disability has made me become one!

  11. Hi,
    To your comment that 'most people who are not immersed in the special education world–especially those whose children are not in special placements–have no idea what anxiety and fear we have often have to endure.' I agree; yet
    many of us really want to understand, though we clearly don't have the same life experience.
    SO, I hope my kinda humorous anecdote above, isn't misunderstood. I still recall lunchtime as being particularly stressful. Fortunately, 'my table' was a bunch of us who were either the 'smart' kids [some of whom probably weren't typical, but this was the 70's!], the 'music' kids, the 'behind the scenes drama club but please don't make us get on stage kids' or some combination. So there was usually someone to have lunch with.
    Anyway, I do wonder whether separate lunchtimes is an example of exclusion, or an accommodation of some sort. Maybe it is both.
    I hope your daughter and Jack enjoy middle school, if that starts in 6th grade now? That is a challenging transition, and yet there might be additional ways to participate. Lets hope. :)

  12. Also, I'm done commenting.
    Jean knows that I write lengthy comments on her blog. Some have insights, and some are completely off topic. :)

  13. So glad that you had what sounds like a constructive conversation, and I really hope some good things come out of this at the school!

  14. I believe your friend. I believe you. I'm so proud of you. I live by, "no one will stand up for your kid like you will. Even if that means being the squeaky wheel."

    She did the right thing. You did the right thing. And yes, reprisals happen.

  15. Since you heard so many crap stories, I'll share this. When I read your post, I immediately thought of all the Principal and Vice Principal (who used to be a special education teacher) at my own neighborhood school work their tails off to include every single child - including those in specialized programs. Because they lead this way, the students - and parent - know that is the way we operate at our neighborhood school. So when I was volunteering at field day last week, and a student in one of the classes that comes in and out of the third grade was looking a little lost, I wasn't at all surprised that another student who's in 3rd grade walked up to him - called him by name and said "let's do this together". The administration has such power in setting the tone of the school. I hope your admin gets its act together so that if something like this happens again, finger pointing, time lines, and such don't need to be debated - things just get fixed. Good on you and your friend. You're making the world a better place.

  16. Heroes are people who take action to right a wrong. They worry about the consequences. They get nervous stomachs and shaky knees when facing the confrontation they have reluctantly chosen to engage in, in the name of right. They would rather they didn't have to do it.

    And they do it anyway.

    Thank you Hero Ladies.

  17. On PTA, I've been advocating in my small way for inclusion and awareness for a few years in MCPS (as well as burden of proof change on the state level). I'm a member of the MCCPTA special education committee, and I've been a special needs chair at school for several years.

    On the theme of inclusion . . . each PTA should have a special needs liaison or chair. And it should have some funding comparable to other committees on its PTA. If your school does't have a special needs chair, become one. If it does, reach out to her and talk about inclusion - or whatever is on your mind. When my son was in elementary school, I worked with some caring PTA presidents, and for three years with a very committed principal - we had assemblies for the students and training for the teachers. We had our own walk for autism awareness and inclusion. I've moved to middle school now, where I am the first special needs chair at that school in years. The experience has been different, and though I feel I'm making progress on awareness, inclusion, and support, I personally don't feel quite the same level of inclusion that I did at my son's elementary school. Hopefully that will change. (My personal goal is to begin a tradition of a yearly assembly on inclusion. Hopefully that will start this year.) Anyway, as I do each fall, this fall I will invite every special needs parent in my child's school to my home for coffee, so we can work together to improve our children's' educational / social emotional experience at the school.

    My pitch: parents need to work together across MCPS. As much as possible, become involved in MCCPTA, your own PTA. Come to SEAC meetings, be a unified voice for change. The Special Education Advisory Committee (SEAC) exists to support parents and our children.


  18. Once again, I appreciate the post. It was funny to read that you have fears about making waves. We feel the same way for many reasons, some of which I can't articulate. We very gently raised the issue during a recent IEP meeting about the school not promoting a culture of inclusion. We were nervous about raising the issue, partially because it is hard to help others understand why we feel this way. We offered a few examples, none of which seem like a big deal ont heir own. I think for us, our hesitation to make a big deal out it is because we are so thankful to be a part of such a wonderful program. It feels like we are being unreasonable to be critical. But, you post, and in particular Jack's own essay, reminds me that just because something is good doesn't mean that it can't be improved. And I should stop being thankful that the school tolerates my son's challenges and remember that he deserves an education too. Any that by promoting inclusion, he will have a better experience and just as importantly, his peers will be better and more tolerant citizens. Thanks for your courage and we promise to carry this forward next year.

  19. My latest blog post just went up.


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