the answer is … the questions

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Ed note: I apologize that the following is not well-edited. Meaning it’s not edited at all. Meaning I hit the snooze button three times this morning and I’m out of time. So good luck. 

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The secret of education lies in respecting the pupil.

~ Ralph Waldo Emerson

~

After yesterday’s post went up, I got a couple (okay, a lot) of questions about my conceptual view of educational inclusion – mostly from parents trying to figure out if it was really the right answer for their own children.

I’ve addressed this before, but I’ve avoided digging in too deeply for fear that I might sound like I’m preaching a universal gospel when really, it is, like everything else, an intensely individual topic that defies a one-size-fits-all answer.

The closest I came to sinking my teeth into it was this past October, when I talked about our choice to include Brooke in her team meeting. In that post, I said the following:

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.)

A friend brought this up yesterday. Her kiddo is struggling in an integrated classroom setting and she’s wrangling with his team to take him out of the room more to – well, actually teach him. I know this road well. I’ve travelled it before.

Many of our kids get easily overwhelmed. Many of them have language processing challenges. Many of them have sensory issues that can make a typical classroom nearly unbearable. For some (and for many years, mine), trying to be taught in a class of twenty some-odd kids is like trying to learn French while your house is on fire. It simply isn’t possible.

The best part about inclusion DONE RIGHT is that it’s never an all or none proposition. It’s flexible, malleable, creative. It is, above all, INDIVIDUALIZED so that the needs of each individual are seamlessly incorporated into the every day routine of the group. And the best part? When generalized, the accommodations of individuals so often benefit the whole. Predictability? Visual prompts and learning tools? Movement breaks? Tools for emotional regulation? Social skills teaching? A little more time to process information? GOOD FOR EVERYONE.

But back to this least restrictive environment thing. Well, based on my experiences in the past and recent conversations with friends, it seems that the assumptions that we’ve begun to make based on that language have become a little, well, restrictive. We assume that LRE means the room with the most typical kids (or even just the most kids) in it. Well, no. It doesn’t. It might. But it might not.

Because the room with the most kids in it may be the one that is the most difficult for your kiddo to manage. It might be the one in which his house is on fire.

For my money – and this is, of course, based only on my own experience with my own kid and may or may not have the slightest bearing on you or yours, but what has worked best for Brooke has been a thoughtful combination of all of the above. Either a typical or integrated classroom as a home base, but with lots (I mean LOTS) of time outside that room. Pre-teaching and review, one-on-one instruction of an individualized curriculum, speech therapy, occupational therapy, social pragmatics instruction – all of those things need to happen OUTSIDE the room in order to make life INSIDE the room possible for her. That’s not always easy. On a lot of levels. But for now, the benefits outweigh the challenges.

Again, this is just what works for my kid. And it’s what works for now. In six months it may look totally different because SHE may look different. As the demands on her change, as the kids around her change, as her skills and coping strategies change, so must we, as a team, change our plan for supporting her. So I can’t say that this is always going to be our best practice. Only that it is for now.

So, back to yesterday’s questions. Since this post is threatening to become a book, I’ll start with the shortest one. It was, simply, “‘Are you married to inclusion?’

I hadn’t planned to share my answer publicly until the question started popping up consistently (though typically with a lot more words attached). And because I think that it is VITAL that we ask these questions — and even more vital that we are honest with ourselves and our children in answering them — well, here I am dedicating this whole dang post to this. So here goes – beginning with my answer to the question, ‘Am I married to inclusion?’

I’m not — or better said, we’re not – “married” to anything for the long haul. What I’ve found to be most important throughout has been our own – and the team’s – flexibility of thinking and creativity of implementation. We try not to find the right boxes to wedge [Brooke] into, but instead to create the boxes that she needs. Obviously that’s a lot easier to say than to do, but we make every effort to stay true to it.

In the present tense, she’s in an inclusive setting, but we’ve fought to have a LOT of physically separate one-on-one or one-on-two instruction. So she’s out of the room a great deal, which, of course has its own challenges, but for her it’s what currently works. Next year, Hell, next month or next week, she may look different. It’s our job to keep up and keep adjusting as much as we can so that we’re serving her best.

I’ve described inclusion as a living, breathing organism. If it doesn’t remain dynamic and flexible it can be disastrous (for everyone involved.)

***

After some further conversation about specific schools, I added the following:

We talk about it a lot (and VERY recently readdressed it) and so far have decided that there really isn’t a better option out there for the totality of what she needs. While [some schools] can likely serve her better academically, they won’t be able to provide what she currently needs socially and emotionally.

We ask ourselves and Dreamy the question about thrice-yearly to make sure we’re being honest. For now, we believe that the option we have is the best one. And truth be told, she is overwhelmingly happy at school. Her [one to one aide] is beyond fabulous – which makes all the difference.

**

ed note: Yes, apparently I use the term “thrice-yearly” in casual conversation. Believe me, I’m just as shocked by this as you are.

The thing that jumps out at me in reading my own words this morning is that in every one of those passages above, I used the terms “currently” and “where she is now” and “for now” ad nauseam. That matters. Those terms are there to ensure the understanding that all of this — every bit — is subject to change as my girl changes.

Inclusion is not easy. (And to the point here, it’s not always appropriate.) But when it *is* appropriate, it has to be done with care. It has to be agile and flexibility and it has to be as proactive as possible, because, in my experience,  nearly anything consistently reactionary is doomed to fail — especially anything educational.

I don’t have time to wrap this up in a bow, but I will leave you with a parting, if not really final, thought on the topic.

If we’re asking the questions with regularity — of  Brooke, of ourselves, of her team, of the doctors and specialist who we trust — and we’re all answering them as honestly as we can, then we’re starting in the right place. Often for us, there is no right answer in this, just the most right — or the least wrong — one for the particular time and place. But for me, the most important things are the questions and the realization that we have to KEEP asking them because Brooke, and her peers and therefore the environment she’s in, will continue to change. They are not stagnant nor static, so we can’t be either.

23 thoughts on “the answer is … the questions

  1. Fantastically put! Everything has to be “for now”. There can’t be any other way. Flexibility is key!

    Love you,
    Mom

  2. As a teacher in an inclusive preschool classroom I love this view on inclusion. It is and should always be what is best for the child and how to make it work around the child’s needs. Not how to make the child work around what is already set up. So glad you have a school that see this and is willing to continue to work with you to accomplish this.

  3. Happiness is KEY. She is happy in the setting she’s in, so that is what matters. I have said, repeatedly, to myself, to the school, to therapists, and anyone else who will listen to me ramble, that all I want, ALL, is for K to be HAPPY. I don’t care if she lives with us forever. I don’t care if she goes to college or doesn’t. I don’t care about anything else, as long as she is happy. Wherever that is, that’s where she belongs. Of course, we have yet to find/be offered that, and today we have a nauseatingly important IEP meeting to discuss just this, but at the end of the day, HAPPY, CONTENT, having some semblance of self esteem, times without soul crushing anxiety, is what we strive for. If a kid is happy, then they will be their best self…(which, barf, that totally sounded all The Secret or something, but, you know what I mean).

    • Amen! Happiness has always been our number one goal…and our gauge of how things are going. Over the years when my son has started to show signs of anxiety (which I equate with unhappiness), we know something’s not working. As Jess said, you gotta be willing to adapt.

    • When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life. – John Lennon

    • God how I wish more people felt this way. It seems nothing else you do for your child will make the slightest bit of difference if they are unhappy and battling a miserable placement. I hope everyone can see inclusion with an open mind. Both inclusion and special-ed classes have worked for us at different times, just watch and see.

  4. This is great.

    I posted a ginormous note in yesterday’s comment thread. Thanks for being so generous with your blog space! And I will continue to monitor and question — thrice-yearly — as well. Ha.

    • You see my question there re the fact that the school has given him EA support 60% of the time?

      “Oh, and … I wonder what we would say if a child who uses a wheelchair for mobility was told that said chair would be available to him for 60% of his school day.”

      Amazing that it’s viewed so differently.

      • I missed that question in the thread of comments yesterday. So glad you shared it again. That was one of our biggest challenges earlier this year – support in the classroom for part of the day. Fortunately the school also realized how much of a difference supports made, and we worked together to change it. If we had to fight harder to make that happen, I think a question like this would be a powerful eye opener that might help the team look at things differently. Great post as always!

      • Yes!! So true and very powerful. Our school of 550 kids has 3 EA’s to float around. THREE. And this is not unusual; we’re in a large school board in the suburbs of Toronto. It’s cut-backs and lack of “resources”, the Board claims, with everyone pointing their finger at the next higher level of government. B/c of my involvement and rapport with the staff, I am lucky that my ds gets the amount of support that he does. I feel badly for the kids who aren’t getting anything, and whose parents might not know (or might not have the time, or the language ability, or the confidence) to fight for it. And yes, you’re right, next on my list is fixing this. I have started taking baby steps toward the political piece, but probably time to ramp it up a bit…

  5. I definitely feel like inclusion is a great thing, but only as good as the people that are practicing it and how well prepared everyone is for it.
    I go back to my own memories of junior high and a blind girl that was in our classroom with a one on one aide.
    This girl had some social skills issues around awareness that other people were there and could see her (touching herself inappropriately, picking her nose, etc) other than that she was very bright. Of course, junior high kids being what they were she was a total pariah. I was not one of the people that picked on her, but I’m sad to say I didn’t do anything to defend her either.
    Mostly the students tried to just ignore her and pretend she didn’t exist.
    Her aide tried to help her, but I think was probably overwhelmed and undertrained. The teacher didn’t really address anyone’s behavior, not this girl’s or the other students.
    Even though this girl had gone to school with these kids most of her life, she ended leaving the school and going to a school for the blind. I hope that was a good solution for her and she got the support she needed.
    But I can’t help but feel we all could have tried a little harder and there could have been a real effort to prepare everyone, students, aide, and teacher, there could have been a more inclusive solution.
    Fingers crossed you find what works best for your girl 😉

  6. You are right, you have to do what works for best the child. My son (he’s HF)was in a regular classroom setting, being pulled for small group and it “seemed fine”, until he hit the 3rd grade. We saw what was really going on for him. He was completely overwhelmed because of all the sensory issues that he pulled out all of his hair-yes every last bit of it on his head. He would basically shut down for the day and not do anything. The school felt it was best that he stay in 3rd grade-since he had no work to show academically that he was learning anything at school. He had to take the state test (FCAT) and stumped the school since he passed with extremely high scores. Of course, they had to promote him to the 4th grade. My husband and I fought with the school to put him in a ESE classroom because we knew that was best for him. We won and he is in a classroom with 10 students, a teacher and an aide for the classroom. Can I tell you, he is doing wonderful. He does his work that is on grade level, his grades are all passing and his confidence in himself is great, it really is like night and day. And here’s the funny thing, we just had his IEP meeting and all of his teachers think that they have been some miracle worker since he is doing so well, when actually it was just his enviornment. Will we keep him in the ESE class? I’m not sure, it’s not up to me, it really up to him. He knows what he can and cannot handle and maybe in the future he will want to be back in a regular class. It really is what is best for the child.

  7. I always feel a little jealous when I read about all the choices and options of living in or near a major metro area. It sounds like a fantasy. The idea of getting to “fine tune” anything for our children is beyond comprehension, when we literally have to fight to even get them tested for an IEP. For the rest of us, our options are “slim and none.” It is a harsh truth. Since my girls were diagnosed with ASD, and subsequently discovered that there is absolutely no support or resources for any family with any special need within a hundred miles, I have started a support/resource group for our area. This is a horrific story, but absolutely true. This is just one example. Because the schools don’t want any more “kids with problems,” they were refusing to test this particular child (because she doesn’t “look” like there is anything wrong with her). After this third grade child was held down and beaten by four other children…and subsequently, punished for the incident (and never taken to the school nurse), the parents went in to talk to the principal. He was not there, so the school secretary called the sheriff, and they were escorted off school property. They said and did nothing overtly threatening. They had received no documentation, no phone call, and, based on the child’s words, knew that she had not been treated medically. They were just very upset and were insisting that something had to be done about this situation. I saw this child after the incident. Her injuries were visible and significant. As I spoke with the parents, I was horrified to discover that this was not the first incident. When I suggested that they keep this child home from school until the situation was resolved…and an IEP firmly in place…they were terrified of the repercussions. The school was bullying them and threatening truancy charges if the child did not attend the next day. It may sound like the wild west, but for vast parts of our country, this is the reality for special needs parents…for any parents. This family is poor and uneducated, and they have no idea that they even HAVE rights. The playing field is NOT level. In our area, I have talked many parents thru the process of contacting our statewide “free” legal support system for families with special needs…just so they could get their child tested or considered for an IEP. (None of us even knew this legal group existed until I started attending some of the ASD conferences/meetings/ events happening in other parts of the state.)
    So, Jess, keep up the good work. Although it may make me jealous, it is incredible to read what is possible. It feeds our hope. It fuels the desire to keep fighting. We may never have available to us what you have, but we can have something better than what is…which is pretty much nothing. If I give up in the face of the challenges, who will educate these parents and advocate for these children? I truly believe that it just takes one…one person believing, one person trying, one person stepping out. It is amazing the response and support that has been growing over the last year. And it is utterly terrifying how many famiies we have found suffering in silence. I can’t stop. I can’t give up. Lord help us. And God bless you for all you have done to level that playing field.

    • I hate everything about this story. Everything. But what I absolutely love is the attitude with which you approach it. And me. And all of us. And above all, the kids and families who so desperately need help. This is the stuff that keeps me up at night. But this ..

      “If I give up in the face of the challenges, who will educate these parents and advocate for these children? I truly believe that it just takes one…one person believing, one person trying, one person stepping out.”

      … is why I believe it will be different. Because you are that one person. I am that one person. We are ALL that one person.

      We will make this different.

      Thank you. And keep fighting. No one should have to live like that. Ever. But so many do.

  8. Again, it is amazing to read your blog and see how well you articulate what I feel. Thank-you. We are in this path of planning for where will my son, functional non-verbal with cognitive delays, will spend his kindergarten year. We too feel the LRE is used to describe facilities not a child’s needs. We have been pushing for a plan – thought out and flexible, but I fear a reactionary approach is too much the norm for the district. Thanks for all of your posts of recent — Not a competition, The whole story, and of course today’s. Best to you and your family.

  9. It really is quite the see – saw isn’t it? You fight for not only inclusion, but inclusion done right , because you know your kid is capable of handling it, only to witness the gap between him and his NT peers growing wider still. So on goes the “hair coat” once again, as you ask yourself ” how could I not have recognized that I’ve slipped into denial AGAIN?! I think the answer is simply that we will always see an ebb and flow when it comes to that gap. Our kids will continue to take 3 steps back in gearing up for a leap forward. (there’s that fine line between hope and denial once again) We too are seeing a decrease in percentile in speech, ( NT peers are just becoming SO mature so rapidly at this age) but the language pragmatics that are developing, slowly, of course, amaze me every day. So the whole question of inclusion will always remain a really tough, individual decision we have to make on a personal level. For us, unfortunately our school, while having good intentions, proved to be unable to execute an effective plan. We commute 60 miles daily, which is a huge strain on our time and finances,to take Vincent to an autism school, and I’m thankful that, as much time and effort that it requires, for now we are able to make it happen. It seems that while I, too sometimes have that feeling of having dodged a bullet, these so called “high functioning” kids have the hardest time fitting in anywhere. I would add that in our situation, although I worry about not having NT role models on a daily basis, we are seeing a dramatic decrease in anxiety, along with a huge increase in self esteem. Having personally had a great deal of social anxiety as a child, I think, and this is based only on personal experience, that if you can take away the weight of feeling isolated from anybody-autistic or not, the setting in which that occurs may well be their least restrictive environment.

    • This really hit home for me:

      “… although I worry about not having NT role models on a daily basis, we are seeing a dramatic decrease in anxiety, along with a huge increase in self esteem. Having personally had a great deal of social anxiety as a child, I think, and this is based only on personal experience, that if you can take away the weight of feeling isolated from anybody-autistic or not, the setting in which that occurs may well be their least restrictive environment.”

      Thank you. That makes a lot of sense. I would love to see my ds’s self-esteem shoot up. He doesn’t present as lacking in self-confidence, bc he’s that class clown who will do anything for a laugh, but I know that that is exactly why he’s goofing around — in the hopes that just one classmate will notice him and smile. How amazing would it be for him to be authentically “seen” every day.

  10. I love the perspective and attitude you take in advocacy for Brooke. I’d love to hear more about your working relationship with Brooke’s school and support team.

    We’ve just rounded the corner of 1 year of services/IEP for my son, and I’m still barely catching on how to best advocate for him. His support team is warm and I believe cares for him, and answers questions that I have. However, I am not treated as part of the team. When i make suggestions I am met with explanations of why my ideas won’t work, and the one time I stood my ground in an IEP meeting it made for a very awkward situation because, looking back, I’m pretty sure they never expected to have my input.

    Burning bridges, taking a me-against-them stance, and building distrust is the last thing I want to do, since these people are the key to my child’s education. But yeah, I’m starting to let the frustration get to me. So far I am stumbling along at best.

    So, how about a post on “the 10 best things I’ve learned about fostering a great working relationship with my daughter’s team?” I need a strategy. 🙂

  11. I haven’t read all of the comments, so sorry if I’m copying any of those above. I like how you are presenting inclusion, because I do think it’s important for every parent to figure out what will work best for their child. Especially if they have limited choices on what a classroom looks like in a typical school in their area…it may behoove them to look at other options than just the school down the block.
    I would love for you to expand the view for your readers in terms of inclusion. I would like for us to discuss inclusion not just as an educational place(ment) but as the general term…as you say in your post “societal” inclusion. If our society was inclusive of all…and I mean ALL…people, educational inclusion would be so much easier, I think. I think we have a long way to go, though.
    I always appreciate your views on life/autism/etc. Thanks!

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