not always

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Brooke on pajama day, soaring to new heights with Ms J

The other night, I went to a small group teach-in run by a Special Education attorney. I both love and hate things like that. I love them because I have found that there is no more powerful tool than information when advocating for my child. I hate them because, well, they can be pretty messy emotionally.

I learned some really important things. I learned that Massachusetts law very clearly states that “school districts must write an IEP and provide the special education (FAPE — free and appropriate public education) necessary to meet our children’s unique needs that result from autism spectrum disorder (academic & social / emotional needs).” (Parentheses theirs, Emphasis mine.)

It also says that “the IEP team must consider the academic, developmental, and functional needs of the child in developing the IEP.” (Emphasis theirs.)

I also learned that transition planning starts at age 14 and that the team (which, at that point MUST include the child, though they can attend meetings long before their presence is mandatory) is required by law to develop a post-secondary school vision statement based on the child’s strengths, needs, preferences and interests around employment, independent living if possible, and community participation. The vision statement must then be translated into measurable goals and objectives and include a plan to achieve those goals. The team is then required to update the plan annually as the child works toward transition.

I also learned that standardized tests (the MCAS here in Massachusetts) really don’t mean diddly squat until tenth grade. Which was nice to hear on a lot of levels.

And then I learned something else. Not about the law or my child’s rights under it, but about myself and my view of the world and my child’s place in it. About my thinking and how it’s evolved.

The attorney was presenting case studies for us to consider. The details don’t really matter for this discussion and since they’re about real kids, I’d prefer not to get into them. But in one case that we discussed, a very young child’s parents were pushing for a more specialized program. Reframed, one might call that a less inclusive program than the one he was in. It was clear that he was not making sufficient progress, even in the school’s substantially separate classroom. The parents wanted to place him in an out of district program. While discussing the case, the attorney said something to the effect of, “Of course, this is somewhat backwards, as typically we look to move our kids INTO mainstream classes as they progress.”

I sat quietly and tried to listen as she continued to talk, but the ringing in my ears grew louder than her words. I watched the other parents, mostly with younger kids, taking notes, scribbling down the gospel. I wanted to do something, say something. I wanted to scream.

As we evaluate programs for Brooke for next year, it becomes more and more obvious to me (Luau, to his credit was miles ahead of me on this one) that my child needs to get the hell out of the mainstream. Even the word feels overwhelming – the main stream – a flowing, thrashing, churning body of water moving along at a current that is NOT LIKE HERS.

She is currently in an integrated classroom. We’ve described it as the perfect setting for her: a special education teacher, a general education teacher, a classroom aide, and of course, her fabulous one to one aide, Ms J. But the more that we hear from the team, the more I ‘m thinking that it’s nowhere near perfect. Don’t get me wrong, the teachers are beyond fabulous and Ms J, is well, Ms J, and it doesn’t get much better than that. But Brooke spends far more of her day either outside of the classroom for speech and social pragmatics and the one to one academic instruction that she so desperately needs — or in the process of transitioning into or out of the room. When she is in class, she’s often working on something different from her peers, usually because the work had to be modified for her in order to be accessible to her. And she feels it. She HATES missing what her classmates are doing. At our middle school transition meeting the other day, her anxiety about always coming, going, and doing different work was the running theme as each member of the team gave their updates. It was hard to hear.

My girl is essentially 3 years behind grade level. She is making wonderful progress. But so are her peers. They’re not standing still waiting for her to catch up. Besides, how often do we say that autism doesn’t make for a slower journey along the same developmental path but for an entirely different trajectory? So “catching up” isn’t a realistic goal either when she’s running off in a (beautifully) different direction. And that’s okay. It has to be. But why, when it comes to school, are we trying so hard to force her onto the same path as everyone else? It doesn’t work. And it hurts her.

This idea that we all should be working toward the goal of mainstreaming our kids is, frankly, bullshit. And here’s why.

Setting isn’t a goal. Setting is part of how we reach the goal. The goal is educating our children. The goal is meeting our children’s unique academic, social and emotional needs in order to provide them with a free and APPROPRIATE education. The goal is the one that we provide to the school in our vision statement each year:

Above all, we want to see Brooke broaden her arsenal of tools, skills and strategies and use them to be a happy, social and confident child who enjoys life and all of its experiences.

That’s the goal. A happy, fulfilled kid who has the opportunity to grow into a happy, fulfilled adult.

The way in which that happens and the settings in which that happens are the HOW not the WHAT. If my daughter were to be repeating fifth grade for the rest of her life, it would probably be pretty reasonable to work toward removing supports over time and moving toward a mainstream version of the class. But she’s not. She’s moving along, forced onto this path that doesn’t mirror her own, with kids who are continuing to fly past her at the speed of light because the pavement was built for their kinds of tires.

She’s keeping pace beautifully, mind you, but it’s HER pace, not theirs. And she’s on her road, not theirs. So this whole idea that as the work gets harder and the demands for independence get ever greater, she should somehow be magically able to engage her turbo thrusters and dive into the mainstream strikes me as pretty destructive. I know better than to sell her short, mind you. There is nothing my kid can’t do with the right support and encouragement. But the more I hear about her day, the more I realize that we’ve been putting her in a position where she is always, always fighting the current. It’s exhausting. And it’s not fair to her.

So when I hear that the goal is to remove supports and to move our kids into the mainstream as they progress, I think, “Not always.”

For us, it’s time to find a place where our girl can learn without having to fight.

Ed note: I’m grateful beyond words for Brooke’s teachers and the team of staff members who support her. They do an incredible job day in and day out. It’s clear that they don’t just teach her but value her, celebrate her, care about her. Even if the setting isn’t perfect, they pretty much are. 

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61 thoughts on “not always

  1. Yes. Yes. Yes.
    The “happy healthy kid who has the opportunity to grow into a happy, fulfilled adult” – that should be the goal. In whatever setting appropriate.
    Thank you for this.

  2. Jess, you are evolving but you have always known you are the experts on your kid! Doing what’s best for Brooke is what’s really important. As with any child, you just can’t know what’s going to happen down the road so you need to make it right in the present.
    As a former PE teacher, I am very impressed with her rope climbing!!
    Keep up the good work.

  3. I think you’ve touched on something incredibly insightful here. Mainstreaming isn’t the goal. If mainstreaming is the way in which a child can reach THEIR goal, then that is the right way to go about it. But it isn’t THE GOAL.

  4. Mainstreaming is wonderful, until you realize your child’s progress is not at the level of the peers. I know that this must be such a difficult thing for you and your hubby to consider. You are wonderful parents and the best advocate that BOTH kids could ever want!

  5. Jack has friends at NLG.. He holds hands with another nonverbal kid during their augmentative communication group. They communicate with each other with their iPads. Jack lights up when he’s with his friends.. It’s just so right for him and one of the sweetest things you will ever see. I have visions of them growing up together, maybe living together with supports.. Who knows!

    Our kids are individuals who deserve to be where they can grow and thrive.. Praying you find a place like that for Brooke.

  6. I am crying. Mainly because in T-minus 58 minutes my husband and I are going to an IEP meeting for our oldest son. He qualifies for assistive tech to help with his dysgraphia, which is coupled with ADHD. He spends more than half his day in resource and with various therapists. The social worker describes him as fragmented. He is. With the addition of assistive tech, his team is recommending placement in an instructional, ie, self-contained, classroom. I am torn, but we will develop the best plan for our son. Thank you for this. No accidents, I swear. I see my son standing at the base of that hill, and his peers are not looking behind…they are looking forward… As we should be…as my son should be…on his own schedule.

    • Lisa: too luck with your meeting; let us know how you make out… These web sites are wonderful for parents (and teachers ) to share. I would really be interested in the progress you see when you discuss the IEP with the school and I would be interested in how they respond to you and I hope it is in a supportive way…. Parents need more compassion from the faculty — I attend IEP meetings with parents and grandparents to support the family/child etc.

      In particular, if you get the chance, try to get many descriptions of what the social worker is saying… what do people observe, what behavior do they see. to say he is “fragmented” is just a judgment and we need to know what underlies the judgment. Usually when a parent says something I ask “does the doctor also see it?” or “what happens in the school/community/church/boy scouts etc” you want to see the behaviors in different situations and not just a “judgment”

    • Good luck. I hope you find the solution/environment best suited for your son. I love your last line..It applies so much to where we are with my son.. Progress is what counts, whatever that unique timeline is…

    • Lisa
      I hesitate to mention this but have you heard of non verbal learning disability. I have only just heard of it but it fits many a box in my family. It is not well known from what I can see.
      My son has low muscle tone, bendy joints, had/has developmental delay. We are homeschooling because school was just too much plus we had no support form anyone really.
      He is 7 and finds writing hard but also mixes up letters like b,d,g,j. He knows them if he can see them written down.
      Not sure if it helps but I know it too well as I have it. Just never knew-school was tough.
      I hope you find the right help for him.

  7. since so much is given from the Law in MA — I just wanted to say we also have a supportive group called “Federation for Children” that will talk to parents, advocate for students and assist in finding legal advice (at moderate prices). They also have training for parents and for “advocates” if you are so desired to help other families. Does each state have this kind of group?

    • I really don’t know. I know that we are VERY lucky to be in MA and that we are nowhere even remotely close to equal educational opportunities or protections across the country. It’s part of what drives my advocacy. And keeps me awake at night.

  8. Once again, thank you, thank you, thank you! I feel guilty when I have said mainstreaming or inclusion is not always the way to go. That “A” in FAPE should be a primary consideration. While ideally classrooms should be welcoming to all children, sometimes a typical one is not, and there needs to be a whole spectrum of classrooms available. While it is ideal for a student to be in the neighborhood school, that doesn’t always work

  9. Maine has the same laws about the child attending the IEP at 14, making measurable goals around secondary school, living, employment, etc. This is the part that scares me. My girl is 12, she can’t cross the street by herself or take a shower and dress without prompts and the school is going to want to make independent living goals? Earlier this week the developmental pediatrician suggested we bring up vocational skills at our IEP meeting. She said they won’t be worked on now, but part of her programming should be out in the community shopping, learning to make simple meals, how to make an appointment, how to entertain herself if she were alone for a few hours, etc. It got me thinking about what her future will be like and it’s all very unknown which frightens me. I know she’ll be happy, healthy and have a full life, but what will it “LOOK” like?
    We decided not to mainstream, one of the most difficult, but best decisions, we’ve ever made.

    • Independence is a wholly subjective concept and I firmly believe that its manifestation should be just as individualized as education. The post secondary plan isn’t a blueprint for how to kick the child out of the house at 18 (or 22) and send them on their way. It’s a plan for what happens after “senior year” and what the schooling / support will look like at that point.

      I hope this helps you as much as it helped (and continues to help) me …

      http://adiaryofamom.wordpress.com/2013/10/24/rethinking-independence-with-amy-sequenzia/

      Hugs, Mama. This stuff is HARD.

  10. Wow this and your post about inclusion are timely and interwoven. I think there is a big difference between inclusion and integration..
    I am beginning to wonder if “inclusion” is in reality more about cost savings? Do we expect too much of education? Are we told what the law is, what the white paper from the government suggests?
    So we put everyone together but do not diverse the curriculum to incorporate individual needs both for the children who need assistance and those who don’t?
    You are right about finding the correct setting is part of reaching the goal.
    For us it is home school right now. We can incorporate motor skill development into a multi sensory approach to learning.
    For someone else our choice would not suit them for any variety of reasons.
    Our problem is there is little understanding of learning disabilities/differences, a confusing approach to school budgets, big and busy school that he would just get lost in, lack of OT/physio support..
    We tried what we thought was the alternative, private school but it was too focused on “academics” and pushing them. Plus no support medically which meant school just viewed me as over anxious..
    The correct environment is what is important and if we push for inclusion do we run the risk of these alternatives not being funded/available???
    The wonderful team you have for your daughter are special people. This is by no means a reflection on them.
    I more and more see we need alternatives based on the needs of the child.

  11. Our kids need appropriate learning peers too – that means kids who are doing the SAME work as ours, not just academically, but socially. Real equals. Real potential friends, not kids who see ours as “less” and are willing to overlook it to act like a friend, but kids who see ours as equal, and want to be real friends. People who like you, and who don’t need compassion or pity to like you. ASD kids are great at pattern recognition – long before they say so, they know they are different from their peers, and it doesn’t feel good. Integrated classrooms can be good if it means there are true learning peers there for you child – but they are often a mis-mash of whatever SPED kids happened to be in your grade at that school. The idea of working a kid towards independent mainstreaming is an old one born before the autism epidemic. Kids with less pervasive issues than ASD can fit that mold. Even a few Aspies managed to outgrow aides and slide into the stream. But wouldn’t it maybe, have been better and cheaper to have a school designed for ASD needs? Wouldn’t they reach their goals faster there, than in a place that isn’t designed for them, where they are bootstrapped in with an aide? Just as long as that place is large enough that there are enough peers with whom to form friendships?

  12. When Jess talks about transition planning at age 14, it’s transition planning to adulthood, and should include the school teaching your child life skills they might need if they can learn them, like how to manage money, use public transportation, cooking and shopping, job skills training, etc. If a child can pass 10th grade MCAS, they can get a high school diploma, and are no longer the school system’s responsibility when they graduate. If they can’t pass MCAS, they can stay on with the school system until age 22.

    • Just want to be sure people realize that students can also stay in the school system until 22, even after passing MCAS, if they aren’t ready re social/emotional and life skills development.

      • Right. It was a real revelation to learn that–I’m sure not enough parents are aware that readiness for graduation isn’t just MCAS and courses completed. There are places where that’s officially stated, but I can’t say where that is…determining readiness for graduation is supposed to be a TEAM decision, but my guess is that the TEAM may not begin discussing it until the parents raise the issue. Especially if the student is out of district, because the out of district high school programs rarely offer transition programs. The school where my dtr was was ready to process her for graduation even though she was nowhere near prepared for what comes next.

      • New Hampshire Dept of Ed. has K-12 Career Development Curriculum Framework guidelines that address benchmarks for life skills.

    • How many “normal” kids are tested on whether they can manage money, public transport, cooking and shopping, and job skills?

      I mainstreamed for my entire life so far, and I was never tested on any of those. And I still can’t manage money worth shit. Same as a lot of neurotypical people I know.

      • Actually, I need to correct myself. I’m a wiz when it comes to spreadsheets. I shop around for the best value for money, I don’t have a car (which is very expensive here), I am awesome about energy savings (my heating bill is 25% lower than comparable houses in my neighbourhood, my electricity bill is 60% lower – nope, not joking), and I still end up in financial trouble. So even though I am more aware of my finances than practically EVERYONE I know, I still can’t “manage money”.

  13. I don’t know if it was you who said “maximization, not normalization” – but it’s this. I never thought of it in this context, but such a simple and powerful thing.

    You do your best for your girls, and we are SO glad you are blazing the trail so we can walk next to you or follow behind you to make it wider and easier to walk for those that come after us.

  14. My boy was also X number of years behind while in mainstreamed elementary school classes. (X because it varied based on subject matter; reading/comprehension is his main bugaboo.) When we put him into his middle school’s special ed program (for all academics; his electives and PE are “mainstreamed,” though even there, because those are the periods when ALL the kids in sped have electives and PE, he’s surrounded by his people as well) they put him in the kind of classes where they teach to the grade you’re in. To say I was skeptical, well…yeah, Skeptical. SKEPTICAL. But I was sosososo wrong. Taught by people who know how to reach him, taught by people who are teaching him 7th grade material, but who do not care if it takes a little longer to get through the curriculum and/or if they miss a chapter or two at the end to make sure he and his classmates gets what they’re being taught, that makes a HUGE difference. I thought there would be ‘gaps’ in his education, but they’re not showing up. When he was working below grade level, his grades were abysmal. His first middle-school report card had him with all As and Bs (except in PE, where he sort of keeps refusing to run the mile…sigh.. ;-) ). That might not be the way they do at it wherever Brooke ends up, and it might not be what works best for her. But what I’m saying is, when we stop worrying about where they are relative to the kids in their classes, they are no longer ‘behind.’ Then they are just learning. And they can learn at levels you just wouldn’t have thought possible.

    • This actually sounds very similar to the program that we’re looking at for Brooke for next year – a very small, substantially separate academic classroom made up of ASD kids with similar profiles who then join the community for non-academics. I’m thrilled to hear that it’s working for your son! Tell him I don’t run either (unless I’m being chased ;)).

    • Also …

      ” … when we stop worrying about where they are relative to the kids in their classes, they are no longer ‘behind.’”

      I couldn’t agree more. The only reason that it’s currently such an issue is that she’s faced with it every day in her current environment. :(

      • As it was for us, until this year (7th grade here). The similarities in schooling issues between Brooke and my son are so remarkable, although we unfortunately never did convince them to give my son a one-on-one aide. (When your kid’s autism manifests in his getting quieter and quieter and essentially disappearing or trying to, they tell you he’s not disruptive and thus not in need of an aide. We started fighting that, which is what got us to the point where they agreed to pull him out for speech twice weekly, for RSP two hours a day, for occupational therapy weekly, for counseling weekly…and that was, it seemed, enough. Or so I thought. Until his math teacher this year described him as a “leader” among his peers. As opposed to his being either an outcast (at best) or a victim (at worst) in elementary school. At which point I might have cried a lot, with a mixture of regret and joy. I’ve decided to give up on the regret. I did what I thought was best. How was I to know? Now I have a better idea, though I’ll be you two years from now I’ll be singing yet another trying-not-to-be-regretful tune!

        You’re awesome. Thanks for providing the free commenting-as-therapy!

    • TC-Thank you for sharing. Everyone’s posts and ability to share their experiences is so very needed and helpful. I am so glad you found somewhere that your son is thriving. I absolutely love and agree with your last couple of sentences.
      My son was not sitting up at 12 months, global developmental delay. Thanks to some amazing therapists he is doing wonderful but still about 2 years behind his peers… but he is just learning in an environment that suits…

      • Exactly, Jo! Also, when they’re adults, nobody will care about WHEN they first sat up/read/could divide/rode a bike without training wheels/whatever. Doesn’t matter when. If they need a skill and they have it, that’s all that counts. And if they don’t need a skill and don’t have it? Then who the heck cares? (Says the woman whose 13-year-old still can’t ride a bike. Is too scared to try. Worth the fight? Not unless he’s going to be a bike messenger some day. Swimming, on the other hand…we’re working on that! That’s a safety issue, especially living in Southern California as we do.)

    • We are embracing the technology we have and are so grateful to live in this age. It has its downsides like sensory overloading. Yet when used correctly has the ability to open up a whole new world to those who require it.
      Writing is just so hard for my little guy. We are using the tablet more and more, educational apps and helping the world to fit around him rather than it always having to be about them fitting into the world especially within school setting.
      I am also seeing that the technology is being made to help those who need it like spelling/grammar check, word recognition on the tablet. Bit daunting for me as I am not used to it but I can see why it is so needed to help. Wish it was a round when I was little.

  15. On top of my 2 asd boys middle school boys – I have a 21 Nt son and he had trouble reading – still does – at the same speed as other kids. I am happy to say I totally mirrored your thoughts. His pace was fine for him – but his teachers were mad! I said he isn’t a round peg – so build him a square hole. I never put his ability against the other kids. He was him – as he was – and is!

  16. Newbie here and couldn’t’ agree with you more reference the ‘Mainstreaming of children’. My dd is only four years old and has global delays (chromosome disorders)….there is NO way we want to place her in mainstream school classrooms which is why we’re so pleased to have her in a specialized school. If the theory is that each child is unique, that concept is gone when we try to crush children into group A and group B. I’ve taught special ed myself-currently homeschool the others in our home, and thank God we don’t have to mainstream our little girl.

  17. It feels politically incorrect when you arrive at this realization, when the rest of the disability community seems to be in favor of inclusion. But yes, the kids do know they are different, and staying in a mainstream setting makes it impossible for them to forget it for a minute. They’re also vulnerable not just to actionable bullying from peers but plain old nastiness. An appropriate out of district placement provides protection from the worst of the social pounding. It’s a good thing to be in a socially safer place and to be with others who face challenges. Kids can see their own disability in the context of a narrower spectrum that doesn’t include the NT crowd. Without the constant stress of not keeping pace with peers, they can focus their energy on learning and growth.

  18. Best decision we ever made, educationally. My girl went to a school specifically geared to disabled kids, a rare treasure. She is 25 now, and the 7 years she spent there impact her still. There, no one was left out or different. They owned the place. Sure changed my mind about total inclusion. They had everything a “normal” kid could want…Homecoming, Prom, fun, football, campfires, sleepovers, peer friendships that still endure today. Not a popular educational model, unless you were one of the incredibally lucky families served by Fairview South. Brookfield,Wisconsin!

  19. I work in a middle school, and we have so many different programs available for our students. I know we work hard as a district to find the right fit for our students. If something doesn’t work, we look to change it for the benefit of the child. After all, they are the most important! So I can totally see where you’re coming from. Also- you probably already know this, but there IS an MCAS-ALT that is available if you feel the MCAS is too stressful for your beautiful girl. I have about 25 students who are on one just in my school alone. It’s always something that can be discussed at future meetings if you find the MCAS is causing more anxiety. :)

    • Jamie, thank you so much. Brooke did the MCAS-ALT year before last, then tried the test last year with significant accomodations. I’m perfectly happy with her doing whatever works for her on any given year. The last thing we want is to create anxiety where it doesn’t need to be!

      There was a lot of talk though about the ALT taking her “off of the diploma track”. Talk that I pretty firmly rejected given that we were talking about a third grader at the time, so no matter what “track” she was on, it was always subject to change. But that said, it was always in the back of my mind, the worry festering about when the mystical, magical diploma door would be closing. (I’ve since learned a lot about the folly of believing in mystical, magical doors :).

      • Where we live in FL, standardized testing begins in 3rd grade, at which point we were urged to consider the alternative curriculum so that Vincent would be exempt from taking the FCAT. I was very skeptical of deciding any track that would stay with him throughout all of high school at 9 years old, so I attended some workshops with a local advocacy organization. What the school district doesn’t tell you is that here, like MA, you can fail the FCAT year after year and it doesn’t matter until 11th grade. It matters to the school, obviously, because if their average score is too low, they get less funding. If you opt for the modified track, you can only get the special diploma which only allows for vocational training and doesn’t allow for admission into any institutions for higher learning. I don’t understand how we can be so quick to close doors of opportunity to our kids at such a young age. The autistic community has shown us time after time how wildly inaccurate these assessments can be!

  20. We went through a very similar realization last year, that our daughter’s very specific sensory and behavior needs would in no way be met in a mainstream middle school program, even an Autism program embedded in a public middle school. It took us awhile to realize that mainstreaming for the sake of mainstreaming wasn’t doing her any good. Her new private school is amazing and a much better ft for her at this point and time. She is thriving, she enjoys school and is in a setting where she fits in with her peers in a way she never did in any of her elementary school settings. The school incorporates behavior, sensory needs, learning differences and other needs seamlessly. It’s amazing and something a public school just can’t do. They also fully integrate social and life skills into everything. Her school also doesn’t do grades. It’s a competency based learning program, highly individualized. We get progress towards goals reports with lots of detail on how she is doing. We were lucky that we also had the full support of her team in finding the best possible placement for her. Can you tell how much we love it ;-)

    You all will find a wonderful placement for her, in that I have no doubt. Wonderful piece,as usual!

  21. Thank you for this. The idea that mainstream is THE goal, and where we should all want our children to be has long seemed ridiculous to me, but you have such a way with words and can frame it in such a way that parents and educators alike should be able to understand it.

    My kids are mostly able to keep up with their peers academically, but they are still a few years behind socially and emotionally. The idea that they must graduate on time has frankly terrified me. Thankfully, we finally got someone to listen and got my 17-year old in a program that suits him, and allows him to continue in a structured educational setting until he is 21, or is ready to move on.

    We recently held the future planning meetings for him and for his 15-year old brother. They are different from IEPs because they are not binding, but we get the opportunity to look into their futures, talk about their and our hopes and dreams, and our nightmares. Then we talked about ways to fulfill the dreams and avoid the nightmares. The boys were able to lead the discussions, with our input. At last, I feel like we are on the right track.

    Best wishes to you as you try to find the appropriate setting for Brooke to reach her goals!

  22. Jess, I think it was last spring that you and I exchanged notes on here. (It’s ok, I don’t expect you to remember. Ha.) My 9yo boy was in very similar placement as Brooke. I was debating a placement in an ASD classroom in our home school (very lucky on that) for this school year.

    We did it. And like many others say — Best. Decision. Ever.

    It no longer mattered what I wanted or “believed in”. (Love the “not a political statement” quote from your reader.) It was time to take a hard honest look at my boy’s days. Was he feeling successful? Like, ever?! Like Brooke, he had an amazing team who would (and did) do anything they could for him. But, he needed to “get the hell out of the mainstream”.

    He integrates for Science/Social Studies (PE is too unstructured and rule based and “team work’y” and NOISY for him). He has his own desk in that classroom with his name on the corner like everyone else. He attends integration with a classmate from his ASD class. A friend. A true friend. (It was worth the wait.) They go together.

    He loves his ASD classroom. He’s proud of his autism and talks frequently about his ASD classmates (one of whom uses only an iPad to communicate and has a service dog at all times — who wouldn’t love to be in a class with a big black lab wearing a purple vest?!).

    And academically? 2 years ago, he could barely count to twelve. This week, he is working on double digit multiplication and “carrying over” and simple division. Finally, FINALLY, he can LEARN. ‘Cause before, he was just dealing with a flaring amygdala, constantly in barely controlled (?!) panic mode.

    And because his stress level has dropped a kazillion points, guess what? His interactions with NT peers are smooth now. His shoulders have dropped 2 inches, and he moves around the school confidently and proudly. Because he has SUCCESS EVERY FRICKING DAY. And finally the school gets to see the sweet, funny, smart kid that I’ve known all along.

    It changed his life. It changed our lives.

    And yes, when I first agreed to the placement, I was all about “for how long? when will he go back to mainstream full-time?” And now? Umm, not so much. He’s too damn happy to think about messing with it.

    Ok now that my novella is complete, I’ll sign off.

    I love this place. :)

    Amanda

  23. all,

    i so desperately wish that i had the bandwidth to respond to every fabulous comment here (and on the facebook page!). please know how very much i cherish the fact that you all take the time to share your stories and your perspectives. it means so much to me.

    j

    • Jess,

      We all need to thank you. Without your blog and fb, so many of parents/caregivers would be lost. For me personally, reading what everyone has to say and all the different experiences, though many different then mine, but at the same time similar, really helps me to deal with day to day issues. I know it helps me to be a better advocate for my son.

      So if you don’t comment to everyone great comments don’t worry :)

      • Totally agree. I love her writing, but I love the writing in the comments, too. I really gain a lot from it all, especially the adult autistics.

  24. When we finally pulled the plug at 6th grade and got the heck out of mainstream, it was like a great weight had been lifted. I must say it does entirely depend on the teacher you get and the classroom makeup. A class with mixed issues (emotional, physical, academic, psychological) was a big disappointment as the noise and stress levels were too high to tolerate but moving into high school with what appeared to be a more severely affected group has been the blessing of a lifetime. Making friends and progess now and I pinch myself to make sure I’m not dreaming because she is so happy

  25. This is such a hard decision, like everyday. My DD is in SDC first grade in California. She mainstreams for reading group with an aide. Her social skills therapist is suggesting more mainstream time for her but we don’t know what that could look like at her school. Of course we are all meeting TODAY, ha! Great timing….
    It is so good to read all these comments, especially about older children so we can get a small glimpse to the future, thanks!

  26. Oh, I loved this. I work at a private, special-ed school in the area (likely one you know well, and know people at) as a speech/language pathologist. So many of our kids come to us from mainstream, where they have histories of anxiety, depression, feeling stupid, feeling different. At my school, they’re all the same. EVERYONE is struggling, everyone is working on something, everyone gets speech, O.T., counseling, a slower pace, etc. So, nobody is dumb, or different. Everyone connects. They make friends. They learn to love themselves. So – whatever program or school you end up choosing for Brooke, I get it. Also, the least restrictive? I firmly believe that it’s more about choice. That no district or education personal can MAKE our kids go into a sub-separate program or classroom just because they’re different. But if the families or the kids CHOOSE not to? Power to ‘em. You’re wonderful.

  27. I totally get this because my kid is not in a full inclusion program either. And, yes, of course, I love the idea of full inclusion done right, but in his case, being in a specialized program gave him self confidence, autistic community, and, most importantly, happiness.

  28. Every time I think you have gone to the summit, you just seem to evolve to greater and greater heights. Most parents see the “mainstream” as the ultimate solution when in fact it may be just the opposite for a particular child. It’s all about the CHILD, and you have helped so very many parents see that in this writing….God, how did you get so smart, and insightful, and wonderful?
    How fortunate “our” baby is that her parents put aside their sense of pride and status and self image to just focus on their little girl and her needs as they always have. More parents need to do the same no matter how difficult it is.
    You are so loved.
    Dad

  29. I wanted to pull my son with aspergers out of mainstream, but was pretty much told unless he were completely failing, he would not “qualify” for an autism program. Didn’t matter to them that he’d rather be dead than go to school. Things have improved, but I still wish there were more options. In January he told me he was starting to feel comfortable at school. He probably won’t feel comfortable this whole year. I feel like more progress could have been made in a different setting or at least he would have felt more comfortable.

  30. Pingback: An IEP is Nothing More Than a Set of Goals | Coloring Outside The Lines

  31. Pingback: Reblog: Not Always | Tanya Villanueva Tepper

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