the in between

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Inclusion is about a sense of belonging, about feeling respected, valued for who you are. It is an all-encompassing practice of ensuring that people of differing abilities related to, for example, sex, age, and race, feel a sense of belonging, are engaged, and are connected to the goals and objectives of the whole wider society.”

Buyie Masuku

We live in a district that, at least theoretically, prizes inclusion. And as a rule, I’m all for it. In my opinion, inclusion – educational, societal and damn near any kind you can think of – benefits everybody involved. BUT – big, huge, enormous BUT here – ONLY IF IT’S DONE RIGHT. Otherwise, it can be pretty damn damaging to everybody involved.

Inclusion doesn’t – can’t – mean throwing everyone in a room together and hoping for the best. In order to work, inclusion has to be thoughtfully designed. It must be painstakingly planned and executed. It must be FLEXIBLE and agile – constantly able to evolve and change as the needs and skills of those involved evolve and change – and it must be constantly monitored so as to see where those changes are occurring in real time.

So when we talk about the law’s requirement that our kids be placed in the least restrictive environment possible, to my mind that doesn’t simply mean the most inclusive setting in the building. It might, but that’s not the point. What it means to me is the ENVIRONMENT THAT WILL BE LEAST RESTRICTIVE TO YOUR CHILD’S LEARNING. (edited to add: And “learning” encompasses far more than academics.)

Diary, October, 2012

Friday …

No matter how well-intended, he says, inclusion is still largely symbolic. And while it might make the people involved feel like they’re doing the right thing, it’s not really making a quality life for our kids.

I remember the first time he called them “our kids.” That was when I knew I’d found the right doctor.

He offers an example. A fourteen year old autistic boy who wants to ask a neurotypical classmate to a dance. His parents and therapists work with him to create a script – to arm him with the language that he will need to ask. They support him, and her, through the process. She says yes.

They go to the dance together. And we write another feel-good story: Girl, Filled With Compassion For Autistic Classmate Gives Him The Opportunity To Attend School Dance. It’s inclusion at work, isn’t it? Or is it?

What happens when he wants to hold her hand? Because, well, that’s what fourteen year-olds do when they like each other, right? What happens when he wants to kiss her goodnight? What happens when he wants to ask her to the movies next Saturday night, or to be his girlfriend?

The reality is that those are not real options for him. The reality is that if he tried to kiss her, the story in the paper would no longer be a celebration of inclusion, but a cautionary tale of the predators among us. Going to the dance with him was an act of compassion, not a date.

I want to protest. I want to tell him that it’s not true. I can’t.

I see Brooke at a classmate’s recent birthday party. Two girls are running away from her and laughing. The ones who she’s known since kindergarten. The ones who stopped calling for play dates when her differences became increasingly pronounced. The ones who now laugh at her for sport. The ones she still thinks are her friends.

I want to protest. But I can’t.

We have to keep working on society, he says, but in the meantime, we’ve got to figure out how to create environments for our kids that really work for them right now, here in this imperfect world that we have to offer. Environments in which connection and friendship and romance and all the stuff of life is possible.

I don’t want to push segregation, he says, but I’ve watched so many of our kids grow up now, and I see it. I see that the ones who are happiest are the ones who didn’t try to force inclusion when it wasn’t real.

I think of all the times over the years that my girl has been sitting with her aide working on something in the back of the classroom as the rest of the class did something entirely different. Geographical inclusion is not inclusion.

But I see the teenagers when I go to visit the specialized schools, he says. And they’re furtively holding hands in the hallways between classes. It’s beautiful. His face lights up with a smile.

I think of every commenter on Diary who has said over the years, “We took my son out of the mainstream where he was floundering and put him into a school for autistic children two years ago. He’s never been so happy.” Scores of them.

The problem, he says, is that I believe in inclusion. I really do. But we, as a society, aren’t really there yet. And it’s hard to give you advice for our little one, he says, because people like you and Luau are trailblazers. You’re forcing the change that needs to happen, creating the programs that need to exist, but …

I realize I’m holding my breath.

But they’re not necessarily the best places for our kiddos right now because the rest of the school and the rest of society have not yet evolved around them enough to allow them to work off paper.

I think of the stories of the kids in the sub separate classroom that we’re looking at for Brooke next year. How happy they are in the functional bubble they’ve created. And how they’ve been teased in the gym and the cafeteria and the hallways because acceptance can be just as symbolic as inclusion.

I reach for my drink and take a long sip. It saves me from having to find words I just don’t have yet. Words that will acknowledge the truth of where we are as a society — so far from where we’ve been and yet still so damn far afield of where we need to be. Words that will acknowledge where that leaves our kids — somewhere in the In Between.

Two days later we will meet with Brooke’s team for the first of many middle school transition meetings. We will talk about one of the two initial placement options proposed by the school district. They will ask us about our concerns. I will borrow Dr Dreamy’s words and share them on Diary’s Facebook page hours later, when they still won’t leave my head.

At Brooke’s first middle school transition meeting this afternoon, Luau and I were asked to share our “concerns” about the transition. I said that given how complex a child she is and how incredibly comprehensive her support plan is in elementary school, the prospect of recreating it at the middle school level is not as much concerning as it is terrifying.

And then I said that our greatest concern is that we address her needs as a whole child – that we don’t sacrifice the social emotional support that she so desperately needs in favor of academic, or vise versa.

And then I said, “But above all, we want to ensure that we’re not engaging in symbolic inclusion at her expense. That we’re giving her opportunities for the real connections and real relationships that she so obviously craves. And then I ate one of the cookies that we’d brought to the meeting so I wouldn’t cry.

And then I will write to Dreamy to ask for his permission to share our conversation. It was one of those watershed, perception-shifting moments for me, I’ll say, and I’d like to share it with my readers, if that’s ok.

And I’ll be very, very grateful when he says yes.

* Dr Dreamy is Brooke’s neuropsychologist. He’s been seeing her since she was five. And yeah, he’s pretty dreamy. 

56 thoughts on “the in between

  1. Yesterday I had the great pleasure of getting to interview two of Michelle Garcia Winner’s right hand ladies for an article I am writing on social skills and special needs children. We were talking about social thinking and I asked them about the concept of peer mentoring and their response was well, eye opening. They said it is good in concept and it is a step in the right direction to creating an inclusive school environment, however in their opinions it is more beneficial to the neurotypical child than the child who is lacking social skills. It teaches compassion and empathy but honestly if a child was capable of seeing and then doing well then they would have already observed and did it! And while I agree with this I cannot help but still hold out on the fact that I did believe our children benefit from being in an inclusive environment. Example, second of middle school my Aspie son came home and said he needed me to buy him different underwear because he noticed in the gym locker room that the other kids were wearing boxer briefs and not tightie whities. And while my son does not like those other underwear, he did not want to stand out. My husband and I were floored because we could not beleive that he had made tha observation. Did he really notice or did someone say something to him? I do not know but it encouraged him to want to do something on his own. I honestly could careless which underwear he wore as long as he wore them. So on PE days he wears the “in fashion” as we call them ones and non PE days he wears the ones he likes. Is he conforming? Yeah, is he trying to fit in? Yes perhaps. But it is more than that to him. It makes him feel like just one of the guys. Anyway not really sure if this makes sense or not but i wanted to share with you. While i always want my boy to be his own person, I also want him to grow and have all teh opportunities that other kids have too. For us it means mainstream so he can have it. Does he still come home and talk about some kids who say mean things, yup but I have friends that have kids in specialized schools and they have said the they had that happen to thier children too.

    I guess I am just saying that sometimes you just have to do what you can do, lay the foundation and then just step back and HOPE and let your child try to walk the path. If they stray, you gently guide them back on track. If they fall you help them back up and if the road gets blown up in front of them… then you find a new road!

    • This is all clearly so loaded, and more than anything, dependent upon individual needs and comfort and well, individuals. The two things that stand out most for me are these ..

      The phrase “peer mentoring” has always bothered me when applied to typically developing kids (or adults) and their differently abled same-aged peers. The first definition that comes up for mentor is “verb – advise or train (someone, esp. a younger colleague). A mentor and his or her mentee are not really considered equals, but teachers and protégées. That, to me, is illustrative of this whole idea that our kids are “included” but still not yet viewed as whole, equally contributing members of their communities.

      Secondly, with the example you gave with your son, I hear you on the fact that he made an observation about his peers and that’s wonderful. What I also hear is that he saw himself as different and decided that his comfort was less important than fitting in with people who were different from him. And the fact that he had the wherewithal to process all of that, make a decision, express his desires and act accordingly is all pretty damn neat. But the question that pops into my head is – what if he could be in a place where he could be comfortable being who he is AND fit in?

      To be clear, I’m not in any way, shape nor form trying to say that he’s not in exactly the right place for him or to push segregation AT ALL. I just see these places where inclusion in name doesn’t always translate to practice and I’m trying to work it all out in my head – and my heart.

      Brooke is nowhere near the mainstream academically, nor is she anywhere near being able to “fly under the radar” at this point, even if she wanted to. I don’t know if that matters. If degree of difference changes the equation or not. I know it shouldn’t, but I feel like it still does. I’m rambling. I don’t have any answers. I’m just starting to understand the questions.

      Thank you so much for thinking this through with me.

      xo

      J

  2. I have been thinking a lot about this. My daughter is starting kindergarten in the Fall. I am thinking of placing her in a special ed classroom in the same school my NT older daughter attends. I know she cannot and will not blend in at school. I hope that she can make friends, but probably within her class. I also hope having her older sister around will help.

    I hesitate to keep her at a special needs school, but I might tour one just to see what is available.

  3. My every thought is with you, Luau, Brooke and Katie and, of course of Dr, Dreamy. You will ultimately make the best decision, Jess. You always do.

    Love you,
    Mom

  4. We are hoping to create a space to help with the “In Between” in Atlanta–a charter middle/high school that offers small class sizes and individualized learning in an inclusive environment designed with the needs of students with ASD in mind. See http://tapestrycharter.org (principal candidates and/or teacher candidates who are interested, please note we are hiring now!). So much of this journey is unknown. We anticipate state board of education approval in February; our first enrollment lottery is mid-March; we open in August; fundraising is and will remain a priority to supplement state/county per student allotments. We know we can create something amazing for all of our students, but it will take every ounce of energy and commitment we can muster. Our goal is to create a model program, which sounds so lofty and yet so necessary. I will be keeping Brooke, and all my extended autism family out there, in my thoughts and prayers. May we all find a place where our children can thrive!

  5. Hi Jess,

    My son is in 5th grade in a V.E class, there is 10 students and 2 aides. He was in a regular classroom up until 3rd grade and just couldn’t handle the sensory overload. I had told you before, he was so upset and stressed, he pulled out all of his hair and stuff. It was so horrible. He is doing much better now.

    Here’s the thing. Here they start M.S in 7th grade. His school has been telling me since last year that once they leave the nest, as they put it, they are mainstreamed and on their own with little assistance. I don’t see how they can do that. My son has told me over and over again that he wishes to go to a school for autism for M.S and H.S. Heck, he even told me that he wants to “go back by our old house” so he can go college at Dan Marino’s new vocational school for kids on the spectrum. There are no schools in my county or outside of the area that I could drive to for kids on the spectrum. He even said to me “Mom, couldn’t you just open a school that I could go to and other kids too like me.” He even has my Mom chiming in.

    It is such a dilemma. We want to do what’s best for our kids. We want them to be able to function in the real world and be productive adults, but I think the problem is that everyone expects them to do this at our pace, not theirs. There needs to be a better understanding and a better balance of how do we get our kids to reach their best potential and not judge them against their n.t peers.

    So what do we do? Do we let them just try and see, do we let them fly under the radar and hope they can make it? Is this allowing them to reach their full potential? Are we missing out on someone who could invent/cure/discover (fill in the blank) because the system in place is not what they want, but what we want?

    I wish I knew the answer to my questions and could find the solutions to help our kids navigate in a way that is best for them.

    • This is exactly the situation we are facing in our school district–they do inclusion and support well (in general) for elementary and then our kids are often left to flounder in MS and HS. I’m so grateful for the committed professionals who are willing (and eager) to partner with our new Tapestry Public Charter School. We will need their expertise and guidance to make the academic, sensory, and social environments work well for each and every student. I wish we had the capacity to open one in every district where our kids need another educational option.

      • My son knows that he cannot function in a regular classroom setting, let alone go to a school where he is changing rooms for every class and dealing with a locker etc. He knows that he will shut down b/c of all the sensory issues. He does want to be with his friends that are in a regular classroom that he sees at recess. He is very bright and I would hate to see him not reach his full potential.

        I have been doing some research to see what it would take to open a school, but then I have an anxiety attack and become overwhelmed. I know from what I have found so far that it would take up to 2 years for approval and you need to jump through hoops and red tape and do a few magic tricks. I think that is why there is no such a school in place. Your school is a Charter school, so do you need to follow GA school guidelines(must take and pass state test, etc)?I’m in FL and according to the state, a charter school must basically follow the public school system b/c it is funded and approved by the school board. If you have a private school, then no state testing, but you have to show the kids are learning. Like I said, I’ve done some research and am not sure about everything I have read.

      • Debbie, yes to everything you have said. We have been working on this for almost two years and we’ve been told that ours was a “fast” process! Our charter petition was approved by the county with its first submission, which isn’t always the case. The idea for the school started in 2012 with two mothers (an educator and an attorney) concerned about their children’s prospects for MS and HS. They first had the “what if?” conversation with each other and then decided to explore it within the community. The support we’ve received from professionals in the autism community has been amazing (and humbling), including many formal partnerships to provide in-school services, guidance as needed, and staff training.

        As a public school, we will align our curriculum with state standards, follow all required testing, and track our progress as a school against goals outlined in our charter contract. And, most importantly for many parents, we won’t charge tuition–our funding will require a combination of public funds and philanthropy. Students will be admitted via open enrollment, with a public lottery if we receive more applications than we have spaces available. But how we reach our curricular and testing goals is where our students will feel the difference. No bells ringing every 50 minutes; small class sizes; no overcrowded hallways; differentiated instruction so that if a student excels in one subject s/he can pursue higher level content but if that same student struggles with another subject s/he will receive the support needed to make progress; sensory breaks as needed for all students (even those who don’t have an accommodation listed in an IEP can seek out the quiet room to regroup on a challenging day); technology to deliver curriculum (laptops and ereaders are cheaper than printed textbooks and will allow us to modify content based on student interest/strength); and the arts as a central component of our program (we have partners to assist with meaningful drama curriculum).

        We couldn’t be where we are in this process without the engagement of so many parents, supportive community members, service providers in the autism community, teachers, administrators and others interested in an inclusion model. It isn’t a one-person endeavor.

      • Thanks Suzanne B. for your info. I know I could not do something like this by myself. I was just doing the whole “what if”. I commend you and everyone involved. I know it is a lot of hard work and commitment that must come from everyone in order to make it as far as getting that first submission passed. I hope the school thrives and maybe down the road it becomes a model for other schools-and I mean not just a charter school, but something the public schools could use. Thanks again!

  6. it’s funny (like existential dread funny)…my parents, way before inclusion was a commonly used word…pushed as hard as they could for inclusion. they watched me struggle to make friends, to mesh with the world…i wanted connections, yet my best efforts pushed people away…so my parents went for a non-stop policy of inclusion; they put me into sports, church groups, recreational school programs…they put me in groups, constantly, thinking that i would just naturally get the hang of it…that if there were an activity involved, like baseball for example, we would all just work together, and i would finally make friends. and instead these groups just gave me all new chances to flounder. this is obviously a completely different situation…happened in the 80’s, pre-diagnosis…but this post means a lot to me. i know, not just that inclusion can be hurtful if it’s done the wrong way…i also know that I WANTED to be included…my own desires lead me astray, i just wasn’t able to understand that i needed some distance, at least some of the time, in order to protect my sense of self. so thank you for this post, jess…i know people can understandably be enamoured of certain words, and that’s okay, inclusion is a good goal, but yes…there can be a down side.

    • Reading your story, I’m so glad that my parents never pushed me to do sports or any other kind of after school activities. They kept asking if I wanted to, and I kept saying no. I did enroll in a handicraft class when I was about 8, and drawing when I was 10, because I liked both those activities. But I can’t remember any contact with peers during those classes, just with teachers. Still, I had some friends all through my school years, so maybe my parents didn’t feel the need to teach me how to make friends. And both of them understood my need for solitary activities – because they both have that need as well.

      Growing up and interacting with people that I can now recognise as being part of my neurotribe has made me a far happier and balanced adult than I think I would have been growing up in a fully NT environment.

      • Autisticook–I am going to tell you right now that I will now probably use the term neurotribe in my daily living. It’s awesome 🙂 Just thought I would let you know, lol!

  7. I remember all too clearly what you are experiencing now. When Jeff left the Sp Ed school and came to the district’s regualr elementary school as a 7 year old, is was fantastic. All the pieces were in place, a small school, perfect teacher, a principal who included them in everything and only taken out when they couldn’t handle it, other teachers working together, “buddy” programs for the NT kids coming into his classroom. It was incredible and I will always be grateful for that experience, but unfortunately as the school years went on, it wasn’t so easy. My husband has said on our middle school experience, we went from the Penthouse (elem) to the Sh__ house. As the NT kids got older and academics became more demanding the opportunities to intergrate became less and less. The need for that age group to be social did not include my boy or his classmates. We also didn’t have the same quality of teaching or leadership from the top. It was vey disheartening. Then in HS, the class became more segregated and that was not neccessarily a bad thing for them. The program was geared towards jobs, self help skills etc. Of course graduating at 21, they were much older than their classmates who didn’t know them in their younger years. And of course, every milestone, like graduation is another grieving moment.
    Fast forward to my soon to be 29 year old…he is a happy productive person living with his peers in a wonderful group home. Again, because the agency that manages this home “gets it.” He is out in the community everyday doing all kinds of meaningful things. He has touched so many lives because of who he is, a funny, brilliant, totatlly tech savy, loving person. The journey is not an easy one but isn’t all about being a happy productive member of this world.
    Good luck, Jess, I know only too well what it’s like to try to make things “perfect” but in the end it’s really what is best for Brooke.

  8. It’s even more difficult for adults to find authentic inclusion…. But as autistic adults you can flip it around and it can work! Create a cool, safe, consistent environment, invite a bunch of autistic friends regularly, and THEN start inviting the neighborhood and greater community. The community will fall in love… How could they not? And all the autistic folks, well they won’t hesitate to genuinely ‘include’ the neighborhood. And then after awhile….. bring the whole crowd to the local park for a hike… Or the YMCA….. Community inclusion! And it’s actually not that complicated to make happen, just takes a little time…. But then it’s there….

  9. This made me tear up a bit. My son’s at the “fly under the radar” level. He passes until he doesn’t. Adademically he’s fine. Socially, he’s doing OK so far, but it’s only 1st grade. I really worry for him, because he doesn’t quite fit, and he will never quite fit. (Luckily, dad and mom never quite “fit”, so that’s a benefit). I don’t know if he has “friends”, though it seems he has playmates because he IS playing with kids at aftercare when I pick him up.

    But I worry so much. I love him so much. He’s such a great, loving, compassionate, beautiful kiddo (like your Brooke) and all I can think is “will any of you SEE this? Will you all just see the quirky, the different and not take time to see beyond that, see the WHOLE person?”

    I’ve been reading articles lately about autism in the workforce – parents with kids who are now entering the workforce that started businesses to help them and others like them transition. And I feel like this is a great thing because maybe, just maybe, it’ll have a “top down” impact. Maybe adults – who drive how their children behave – will learn what real inclusion is, what real acceptance is because they’ll be living it.

    It’s the adults that drive it. We’re supposed to know better, to be able to look past differences. But not everybody does or wants to – until it’s their family or their kids.

    Dr. Dreamy’s right – we’re not quite there yet as a society, BUT with people like you, your readers, our autistic blogger friends blazing a trail, it’s changing. It’s just never fast enough, is it?

  10. The move to public school terrifies me…I am extremely spoiled (though not without some classroom issues) by his current special ed preschool. Despite the recent concerns (ironically if he has an aide hell actually have more support theoretically in kindergarten) he has a team of therapists that go above and beyond in their work. I am seriously floundering in thinking about the IEP that will take place in just over a year. There are no other schools in our area for special needs so I have no idea what happens next. I know what I want to happen but as you say even the good schools aren’t there yet. Terrifying stuff! On another note do you know of any sites etc to get help learning how to go into that meeting…most of the parent advocate and IEP help sites follow the traditional autism model and don’t understand a single word i say so helping me navigate the mess falls by the wayside.

  11. My mom worked as a special needs aid for years, in a variety of school districts, and would agree completely with this. They used to try to foster inclusion by having NT kids come and have lunch with the special needs kids in the special needs room, but it would usually turn into games for the NT kids, with the special needs kids looking on as usual. My mom would spend half her time kicking kids out of the room because they weren’t actually interested in being there for the special needs kids (this room had some video games and other games that weren’t in the rest of the school, so it was an attractive place). She was always so frustrated that politicians and other decision makers use the word ‘inclusion’ without having any idea what it means or what it entails.

    Best of luck to you; the transition to middle school is terrifying at the best of times.

  12. I taught in a public school in Virginia for seven years, and I feel my school had a great handle on best practices for inclusion. Part of the reason for this was that the kids were around special ed children from an early age, even if it was just for homeroom and recess, and part of this is that our teachers actively spoke about not just accepting kids for their differences, but seeing the inherent worth of kids for their differences. The students in my class used to fight over who got to be the special ed kids’ buddies for the week- they loved the role, loved helping them with their morning work or just playing games with them. I think part of the reason inclusion there was so successful was the groundwork laid in the early grades. The truth is I don’t believe many parents of NT children talk to their kids about celebrating differences- I’d ask my students, and they would respond that they’d learned that at school. School is where acceptance and celebration need to be taught, emphasized, and expected, the earlier, the better.

    Your paragraph about those two girls just broke my heart. Any chance talking to the moms would make it better? Hopefully they’d be horrified (as they should be) and would insist they stop. Brooke deserves much better.

  13. Tough subject on our front, as well.

    Ethan starts Kindergarten next year. For the past three years, our little guy has been in the most amazing school for children with autism. The school has the option to keep children until they reach second grade.

    We made the very difficult, long thought hard decision to cut him to half time and to put him half time into our local Head Start. Not that I *WANT* that of him, but E COULD fly under the radar. I do teach him to love himself, to be authentically him. In our case, segregation was working against authentic connection with E at his autism only preschool. Ethan is not just verbal, like his mom, he is verbose, lol. While he still struggles in places not obvious to others (but to those who know him well, we can see it), he has developed his language skills pretty well. He was struggling at the school to find anyone with his level of lingual development. E became one of the “lesser” affected kids at his school and he was missing the connection with kids who have more language, more ability to pretend, less sensory limits.

    It’s scary. I won’t know for a while whether or not we made the right decision. Our local school district has a K-3 mixed class. E is a brilliant boy. He reads on the second grade level. He asks the big questions, the ones that are developmentally above his peers.

    We put him in the Head Start and he *has* made authentic connections. He has friends now in both schools and for that I am very thankful. I am glad to see that he has his autism specific program that has 20 kids in it, who make him not feel alone in his autism. I am glad he has his Head Start class full of really well-loved kids who know how to love other kids. E has been able to scaffold by being connected more with his NT peers at this point.

    That scares me, too. Because I don’t want E to become disillusioned by his closer connection to the NT crowd, trying to be something that will take so much more effort than is rarely comfortable to upkeep. But I don’t want to limit his ability to grow with a crowd who can scaffold him.

    And while it all seems great now…

    ….Will I still feel like we made the right decision in Middle School?

    Will there come a time that his classmates that love him now won’t be so willing to appreciate the growing difference gap?

    Will removing him from the maximum amount of time from his neurological “like” peers make him try *too* hard to BE an NT?

    It’s all so scary. Such a big deal. Right now he is thriving in the mainstream. But we’re talking second level pre-K, here. Not even Kindy yet. I don’t want my kid to be the *token* handicapped kid in a class. I want him to be a classmate in a group of kids, who may or may not need adaptations, but just one of the crew all the same. Will inclusion, in the long run, break his spirit, force him into a mold of a person he isn’t, or allow him a chance for optimal development? I wish I had a crystal ball 😦

  14. “Geographical inclusion is not inclusion.” This hit me like a ton of bricks. I see this happening to my son who is in the 3rd grade with autism. He is included in the regular classes pulled from most academic classes for smaller class of kids with LDs. He is left with regular class for morning instructions, lunch, recess, and specials (art, gym, computers, music.) He complains constantly of being not being able to do what the other children are doing (ie. if he doesn’t use the paint brush the correct way, he is only allowed to draw with a pencil and paper. or not being allowed to play a musical instrument because he didn’t participate with the musical worksheet.) He still not reading and struggles with handwriting but they push for him to get the “social” benefits from being in inclusion.

  15. It was not an easy decision for me to make the change to a specialized school for my son. He is Brooke’s age and would also be starting mainstream middle school next year. I read everything you write, and have so much respect for your perspective, you truly are a trailblazer . One of the things I always wished for was a school district more like yours, where inclusion seems to be executed effectively, but I think your Dr . Dreamy may be exactly right. We can’t force classmates to be compassionate if they don’t feel it, or not to be influenced by peer pressure. We can only lead by example, educate, and hope that we are getting through. Meanwhile, our kids are feeling isolated, and to me, that kind of anxiety is so very restrictive to learning. So we are now at our second private school in as many years( the first one didn’t have enough focus on academics for us) and while I’m still uncertain much of the time, I feel like it’s a good start connecting him with the local autism community and helping him to find/form his village of kids he can relate to.(By the way, I think “out of my mind” by Sharon Draper should be required reading at the middle school level )

  16. I am so torn by the dialogue here. I get the “geographical inclusion is not inclusion” – totally get it. I get that things are different in middle school and high school – I have a 10th grader on the spectrum. My concern is that the more and more parents who choose to send kids to separate schools because of all of this pretty much extinguishes the likelihood of upper level schools changing how they do things. We are not going to change society if we only push the “differences are ok” with younger kids, but let it go when they turn 12 (and then try to pick up the mantra again when they are 18). But the decisions we make are so that OUR kids can be ok…and that’s ok.

    Jess…I’m not saying that you or anyone else has to sacrifice your child’s well-being by fighting the good fight. But…what is it going to take to make middle and high schools safe for our kids? My kiddo is in a private (Catholic) high school but previously attended public school – middle school was abject torture at times. Switching him to private school without an IEP was a bit terrifying but the environment was 800% better for him. He struggles some, but it’s worth it (he says so…not just us!). He tells people he is autistic, and probably shows them why, just by being himself everyday. So…I cannot judge decisions made for your child’s safety/well-being. But I worry about our kids and work in the education system and cannot help being concerned about this continuing conundrum.

  17. I am convinced that to teach social skills, we have to give both direct instruction in it and then let them practice in real settings, such as the dance example above. I’ll tell you a true story, I did not even think to go to a school dance before 12th grade because no one taught me any dancing. I also think that teaching kids to get dates is a good idea, even if the papers may think that that is wrong. Some kids may not know how to get a boyfriend / girlfriend. We cannot assume people with ASD are asexual. Instead, I think their deficit is not easily learning the social rules of recreation, leisure, manners, etiquette, friendship, and romance vicariously and instead need someone to teach it to them directly and in a positive manner.

    I a m a person with autism myself, and I have presented on this topic in many states to school districts, conferences, parent groups, and more. I favor inclusive enviornments for social skills and teach the kids what to do and have them practice. I also helped with an 8th grade social skills class for my practicum hours when I got my masters.

    There are some very good resources available on this including:

    * Brenda Smith Myles book “The Hidden Curriculum”
    * Emily Post Institute
    * Boys Town Social Skills
    * Carol Gray’s Social Stories
    * Comic Strip Conversations
    * UCLA’s Peers Program
    * Michelle Garcia Winter’s books
    * Tom Dowd’s Books
    * Scott Belini’s Books.

    Stephen Hinkle, disability rights advocate.

  18. We transitioned my son to middle school this year. From a “regular” sixth grade classroom (he’d been in “regular” classes his entire school career at that point; not a large enough population for actual inclusion programs) to a special-needs middle school program, where he is FREAKING THRIVING. (Sorry. Had to shout. After years and years and years of trying to keep him with his peers, I realized…HE WASN’T WITH HIS PEERS. He was with people who either tolerated or condescended to or taunted him. Those are NOT his peers.) It’s amazing. He’s doing really well in school, after struggling ALL THE TIME previously. And he has friends. Not a whole lot, and not all of them are fully ‘with’ him (he’s young, developmentally, younger than even most of the similarly delayed kids), but there are some, and he is happy and feels PART of things. Dare I say…included? In this segregated program, finally, included.

    • This …

      After years and years and years of trying to keep him with his peers, I realized…HE WASN’T WITH HIS PEERS.

      Ho. Lee. Crap.

      Yes.

      Wow.

      Thank you.

      • Jess
        This I think is the universe not only whispering but shouting!!!!
        Lee
        Thank you for sharing this. For many reasons it has helped me today when I so needed it.. For today has been a day of revelations for me.
        I am glad your son is thriving.

      • You’re welcome. There’s so much in this concept, this inclusion thing. I’m certain that there’s not a right and a wrong here, just what is best for each individual. Sometimes it just takes a while to figure out what that is. Thanks for starting…and continuing…and nurturing…the conversation.

  19. Jess
    Your post is very much rattling round in my head since I read it earlier today.
    I will compose a better reply when I have time. I am about to tackle some paperwork regarding a meeting I have tomorrow that ties into advocacy on several fronts.
    However as far as what to do about it for you and your family that is firstly a very personal/family matter.
    Two thoughts I have are;
    1) Where will your daughter be most comfortable and likely to thrive? Each child deserves an environment which enables them to reach their full potential.
    2) A yoga teacher I had told me to “listen to the whispers of the universe” when needing guidance, direction etc.. sometimes it is an overheard conversation. something you read etc..
    I wish each of you the best as you strive to find the solution that fits.
    Namaste…

  20. I get where M. Kelter’s coming from as well. I grew up undiagnosed with some really, really, really in denial parents (they refused to take me for evaluation, despite the school referring me every year – they’ve expressed concerns about “labels” limiting kids and suchlike, so I think they thought not getting a diagnosis was for the best with me). They couldn’t understand why I wasn’t a social butterfly like my sister. They forced me into all sorts of social-heavy activities, and denied me any chance at exploring interests that were too solitary. I’m sure they had my best interests at heart, but I was miserable. Completely. Miserable.

    I have no advice to offer, only sympathy and understanding. I’m sure you want to do the best for your girls, and I’m glad you have the insight to see that inclusion might not work if it’s inclusion in name only.

    I will say that I’ve only ever been able to make friends with allistic people over a shared interest – school, work, gaming, etc, and those relationships evolved organically, usually with both of us getting something out of it. Relationships wherein someone took it upon themself to befriend me for my own good never lasted long either because they didn’t respect who I was as a person, or because they felt I should be grateful that they were bothering to spend time with me – as if I was a chore. Relationships wherein I was at an activity I didn’t like or an environment I couldn’t handle also didn’t work, because then I viewed the socialization as a chore. I know your mileage may vary on that front, but it’s my experience.

    I hope you figure out a way to keep Brooke happy and safe as she starts middle school.

  21. I wonder if the adult autistic voices are giving us the real insight. That maybe as parents we need to find the place where our kids thrive and aren’t miserable (as best we can), because that’s where their foundation of self-esteem is built, wherever that place is. Having a place where you know you fit, having at least one or two friends, learning what you need to feel safe, accepted, OK to be yourself, as a kid give you the ability to know who/what you need as an adult.

    It’s our job as parents, I guess, to keep working to build the inroads into the allistic world so that it becomes what we want our kids to have now – to have those worlds merge (or at least meet easily – kind of like the different countries at Epcot that are separate but flow into each other) eventually. We keep building the bridges, making the invitations, showing how interesting it is on “our side”, so that when people are ready they can cross over.

  22. Yeah, I want to second what TC says. The emphasis on inclusion, I think, has to do with trying to provide equal access to resources and opportunities for both typical and atypical students. But atypical kids often do not want, or need, resources and opportunities intended for typical kids. Including a child in a class that is structured to only serve other children’s needs is just another way of excluding them. Both socially and academically. I’m in favor of sticking to the strategy that NT and atypical weirdos, nerds, freaks, and bullied kids have used since the beginning of time: Find the other weird kids. Go to where they are. Stay there as long as you want/need. Rinse and repeat.
    From a more personal perspective, I went to Montessori schools for most of my elementary and middle school years (after one disastrous year of public school in first grade). It wasn’t perfect, but I was, generally, quite happy, because of the way that academic work is structured in Montessori (and, as far as I know, many special ed. classes). In those classes, everyone worked at their own pace, sometimes in groups, sometimes alone, sometimes with a teacher. And they worked on whatever work was at the appropriate level for them. This meant that, as a 11-year-old, I could read books about ancient Norse, be unable to read clocks, draw a giant map, write some sonnets…and then spend recess hanging out with the other kids who enjoyed pretending to be cats and drawing stripes on our face with dandelion heads.
    I could work on academic work that was at the appropriate level for me, without being embarrassed or isolated, and then also interact socially with kids that had the same interests/social “style” that I did, even if we might have nothing in common academically. Putting your kid in a segregated classroom is never going to mean isolating them from people who are different from themselves; all special ed kids are different from each other. The important thing is that lots of people being lots of different kinds of different together is always better than one person being one kind of different alone.

    • Beautifully put. Thank you. What we NTs tend to forget (now that we are parents with autistic children) is that many of us were also miserable for much of middle and high school. Well, at least I was. Trying to be aware of my own transference with my son here. 😉

    • Finding the other weird kids has been my strategy for happiness ever since I was 12. In fact, I think most of my friends (and coworkers! I work in IT) have some autistic traits, to the point where I can see light bulbs going off in their heads now that I’ve gotten a diagnosis. Doesn’t mean we all present the same, but yeah, “lots of people being lots of different kinds of different together is always better than one person being one kind of different alone.” Word.

    • “The important thing is that lots of people being lots of different kinds of different together is always better than one person being one kind of different alone.”

      Love this…really do!! And really loved the picture I got of you as a child…just beautiful, really. If it was half as good as the picture in my head, no wonder you were happy most of the time!!

  23. I love this and all the comments. My step-son (by the legal definition. I have been the only mom this boy has known since he turned six and he calls me mom) has flown under the radar until just recently when he finally received his diagnosis of Aspergers Syndrome. He has struggled horribly with inclusion. He desperately wants to connect socially but lacks the skills to do so successfully. Self contained has never been an option for this precious boy. The years of bullying have had a major negative impact on his self esteem. Add to that his unsuccessful attempts at connecting socially have also damaged him. We may finally be at a turning point on getting him the services he so desperately needs. Ironically this is because of a discipline hearing that occurred today. Somehow, the school team found that the incident was not a manifestation of his disability. I believe this was decided because they realize that full inclusion is not an appropriate setting, but their hands are tied because a 504 does not allow for alternate placements. This can buy us time to pursue further medical (neurological) evaluation to get the documentation he will need to be eligible for an IEP, which can address placement. My brilliant boy who does not want to be identified as different has finally squeaked loud enough for the powers that be to hear his need. We are still waiting for the final decision on disciplinary action as the superintendents designee wants to deliberate on the information we provided at the hearing before putting forth his recommendation. I am hopeful that he will get what he needs and that we may be able to undo some of the damage done thus far.

  24. emmapretzel that is such a great post, so many great points! ‘lots of people being lots of different kinds of different together is always better than one person being one kind of different alone’. Two years ago a good friend of mine finished a 4 year 18-21 transition program at a school for ASD kids and young adults, and the friendships and camaraderie and FUN they all had together during that time has now endured into young adulthood, they still get together monthly and stay in touch through Facebook, sharing interests and supporting each other as they figure out their next steps.

  25. What our public school system offered our kindergartner was completely inappropriate–gigantic class, nowhere near appropriate supports–so we’ve tried a private special ed classroom this year. It’s been amazing. Our little guy is thriving academically and socially, enjoying his peers, happy to go to his classroom every day. But I see already how he’s being left behind socially by his NT friends from preschool and wonder how much longer they’ll be willing to have play dates with him, and I live in terror of running out of money (real, imminent possibility) and what to do when he ages out of this school if we make it that far. Our public school system is all about inclusion, but inclusion in a classroom where kids are bound to fail–somehow especially at at young age, when they need to build a foundation of self-esteem and learn how to advocate for themselves–doesn’t make sense. I’m at a loss.

  26. Jess,
    I think this post is one of my favorite you’ve ever written. Inclusion is so tricky, and segregation is certainly not OK.
    When I got to IEP meetings I always make clear that while I am concerned for my daughters academic advancement, my main concern for her is her emotional well being, her confidence and self esteem. We need to look at where she will be at the end of her time in school (she’s only a 6th grader) and make sure that from now until then her self esteem and confidence isn’t damaged.
    In elementary school we didn’t do the self contained classroom. My girl was in the mainstream with quite a bit of support and resource room time. She struggled socially, academically, she was exhausted at the end of each day. She made no friends, she was teased, it was a nightmare. I would go into her class for special events and kids were mean girl nice to her. It broke my heart.
    Transition meetings came and my concerns were heard. Her IEP doesn’t call for a self contained classroom, but that’s what she’s in. She spends most of her day with a special ed teacher, an aid, and a very small group of kids with like abilities in the resource room. When they travel to science or social studies, it’s together and the teacher is modifying the work. She is flourishing. She’s making friends that are appropriate for her, she likes a boy! The school work is challenging but not too challenging, just enough to advance her but she can do it so she still feels great about herself.
    I’m not sure why, but these special needs kids are “off limits” to most of the mainstream kids in our district. They don’t tease them. They say hello out in the community, give high fives, it’s very welcoming and heartwarming. I asked my girl who one boy was that said hello at the library recently and she had no idea, but he knew her name and was very excited to see her and engage in conversation. I don’t know if these kids have grown up from elementary school to middle, matured a bit? Our schools are all about working on kindness and community, so maybe that’s it. Whatever it is it’s working and it’s wonderful. Maybe you will find a similar experience with Brooke at the middle school in your district.
    In my opinion I think the most important thing to remember, and I’m sure you already know this is that end game is always at the forefront when thinking about our kids, and her confidence needs to remain in tact as she makes it through middle and high school, and how can that best happen? That’s what I asked myself.

  27. I work day in and day out to create the inclusive environments for children with autism. We create groups where the children with autism learn the skills they need to join and everyone learns the skills they need to welcome. Every child, every person needs to learn how to join and to welcome, for many children it is quite easy, for others not so easy. However, with support and focus I have seen many, many children with autism who had been isolated now able to participate in groups activities and to collaborate with the other children. It takes time and focus, that focus needs to be on the skills that the child needs to join groups developed incrementally over time.

  28. I love your insightfulness and thoughtfulness. It gives me pause to read every post you write.
    I have been struggling with the school issue for a while now (though this year our awesome support team has completely disintegrated and that is the nature of our short-term struggle, while inclusion is really our longer term struggle)
    I would love for your permission to quote you in a post (with a link to this article of course) Thanks!

  29. Pingback: Social Inclusion at School | Adventures of Team W

  30. You have no idea how relevant this is tonight. I am rereading my comments from last year above and the discussion I had with Suzanne. We just had a meeting today with the teacher with our concerns for next year and transitioning in to middle school. H@ly Sh!T,You must have been reading my mind.

  31. Found a quote from a year ago and then found where I had shared this blog post the next day. I felt the need to share the quote here: “Special Education should never be treated as a place! It is a SERVICE!” ~Principal Nadia Lopez, Mott Hall Bridges Academy in Brooklyn, NY

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