I Would Just Like to State for the Record That the System is Stupid

It is not a secret that Jack has been struggling in school this year. His inclusion classroom isn’t the right place for him anymore. His teacher is fantastic, she really is, but it is just not working. I can’t even begin to tell you how many IEP meetings I’ve sat through this year.

Our most recent meeting for Jack was last Thursday, but I should go back to last fall to give you the whole background.

Jack started struggling early this year. Third grade is a big transition for anyone and it was a huge transition for Jack. I started to see early on that things weren’t going well and called a meeting to get the ball rolling to have the school district take a look at him to see where they thought the appropriate placement was. Then I hired an advocate and went through the same process privately.

Both sets of people pretty much came up with the same conclusion: Jack’s next step in school placement is the Asperger’s program, which is a self-contained classroom with mainstreaming opportunities in a public school located somewhere between Quinn’s school and Sam’s.

I mean, actually it’s called the High Functioning Autism program, but I think referring to people as high or low functioning is kind of an asshole thing to do and bullshit to boot, so I’ll be calling it what most people in the county call it, which is the Asperger’s program.

No one mention to anyone that Jack doesn’t have Asperger’s, okay? It’s our little secret.

Anyway, at one of the IEP meetings, it was mentioned that Jack had long (like, for years) been considered a “poster child” for this program, but as he was doing well in his inclusion classroom, he was not eligible for the Asperger’s program.

Interesting, huh? See, there’s this thing called the “least restrictive environment,” or LRE. Unless you have a special education kid, you probably don’t know about it. If you do have a special education kid, you’ve probably heard that phrase a million times. What it means is that kids are supposed to be put in the most mainstream placement that they can hack.

It makes sense. You want kids to learn to live in the mainstream and you don’t want to isolate or stigmatize special needs kids just because they have a diagnosis. That makes sense. I’m a fan of inclusion. I think it is great for both typical and special education kids. I think everybody can learn from each other. I understand LRE and I think, applied with broad strokes, it’s absolutely what we should strive for.

Except that it’s kinda bullshit. See, Jack had to pretty much fail at his current placement to be put in a more restrictive environment—that is, a classroom made up entirely of kids with autism.

Then there is Sam. You might remember that he is in what is known as the Highly Gifted Center (another asshole name for a program, if you ask me) in a classroom made up entirely of kids with giftedness—and the quirks that come along with it. That is for damn sure not the least restrictive environment for him. And he damn sure didn’t have to fail at his original placement to end up there.

But because being called gifted is something to strive for, being put in a self-contained classroom in a school 20 minutes away from his home school is something to be coveted, sought after, and congratulated. Because being a special education student has an entirely different value judgement attached to it, kids are supposed to strive to move out of their self-contained classrooms in schools 20 minutes away from their home schools back into the mainstream.

There are two exactly opposite standards for these two groups of kids.

What I see when I look at my kids is that they have found classrooms that work for them. They have/will have teachers who know how to teach to their particular brains. They will have peers. They will build on their strengths and work on improving their weaknesses. This is how it should be. It shouldn’t matter if it is more or less restrictive. Semantics shouldn’t get in the way of teaching children.

If someone is the poster child for a particular program, HE SHOULD BE IN THAT PROGRAM.

I don’t know that the Asperger’s program will be the best thing for Jack. I hope it is. If it isn’t, then we move on to the next step. What I hope happens is that Jack will be able to get a couple of really solid years of specialized instruction under his belt so that he will be able to either move on to a middle school Asperger’s program or return to his home school for those grades.

Mostly I hope that his dread and negativity about school will be alleviated at least a little.

Also I hope that I can figure out how to deliver three different kids to three different schools every morning and then manage to reclaim them again every afternoon.

So remember that meeting where I was told Jack was a poster child for this program? That was two months ago. At that meeting, it was decided that the Asperger’s program was the place for Jack and that we thought it was the right environment for him and yay for the correct placement! Except they couldn’t finalize the placement until we had new goals written and blah, blah, blah, we’ll meet again in May and we can do this then.

Unless, of course, somehow Jack pulls his shit together and has a great couple of months, in which case he would no longer be eligible for the program for which he is a poster child. Therefore, Stimey, because you believe that the Asperger’s program is the right place for Jack, you are going to spend the next couple of months being torn between wanting your child to be successful so he feels good about himself and wanting your child to fail so he can have the right placement.

Yeah. Exactly. That sucked.

Also? I shouldn’t have worried.

Things got, like, exponentially worse, to the point that Jack was not getting a whole lot done at school at all. Both his teachers at school and us at home worked really hard to try to help him. To no avail. His teacher told me a story about how once Jack stalled and refused to do any work until lunchtime and then looked at her and said, “I won.”

Ballsy, that Jack.

So. Long story short, the special education system eventually led us to what I hope is a good place for Jack for next year. In many ways I am sad for Jack to leave the school he has been at for four years because he has had wonderful teachers and his team really, truly cares about him. They have tried their hardest to get him what he needs and I am so grateful for that. I’m a little nervous to step into the gaping unknown of a whole other school and program.

Regardless, I’m hopeful. I really do think this is the best available option for us. My fingers are crossed. And my heart is finally fully set on the hope for absolute success in the right classroom for my precious child.

100 thoughts on “I Would Just Like to State for the Record That the System is Stupid

  1. We have our IEP on Monday. I hate that we have to negotiate our kids’ education.

  2. This was a interesting post to read, I know the schooling situation isn’t perfect, however, I am amazed at the opportunities that are available in your country. Just out of interest…. how do you explain the different degrees of autism? My son is very challenged and I also hate using the word lf…. I never know what to say!

  3. I have to admit I use the phrase “high functioning” with Joseph partly because I don’t know how else to describe his particular brand of quirk and partly because it’s a good way to explain to people who don’t know him well why he seems so “normal”.

    I’m glad Jack is going to move to a more suitable situation but yeah, the way he had to get there sucks. 

  4. I love you and the advocate and mother that you are.
    I love Jack for being Jack.
    I hate what our kids have to go through to get what they need.
    It’s the deficit model of educating our kids. Why shouldn’t our kids be where they need to be? Why does moving to the right classroom for them have to be looked upon as a failure? Why do our kids need to be put through the stress of feeling “wrong” when they are SO NOT WRONG but so totally right in knowing they need a different environment.
    Can you tell I’m in this with you? And I’ll stop venting now.
    You are my advocate hero. Can you come with me to my placement meeting at the end of May?

  5. I feel like I’ve been beaten to a pulp by the school system where I live. I keep telling myself, “Just four more years!” but sometimes I don’t know if I can make it. I will never understand why we have to wait until kids are depressed, defeated, and totally anti-school before we do anything to help them.

    My son will be going to co-taught classrooms for his core classes in the fall, and if that doesn’t work, he’ll be moved to full-blown special ed. The special ed director is adamant that special ed isn’t the best place for him, but I already know he’ll drown in mainstream high school classes, even with a special ed teacher in the room. My only alternative is to homeschool.

    I really want to marvel at the different levels and choices available where you are, but considering what you’re going through to get them, it really doesn’t seem much different. Hugs to you and Jack as you do what you’ve got to do to get what he needs.

  6. What, I wonder, happens to the children who don’t have intelligent, on the ball, informed and eloquent parents batting for them? Jack is more than lucky to have you acting as his advocate. And, if there was an Asperger’s programme available here, both our boys would totally be in it. 

  7. Best of luck with the thing today, by the way. I’m guessing I know which piece you’ll be reading. It’ll be awesome. 

  8. I hate the dance we force families and students to do just to get the supports they need in place.but I love that Jack said”I won!” heh heh. I hope the new placement gives him many opportunities to say that often. You, too.

  9. My kid was declassified Friday. I couldnt even complain because there were kids with more needs than mine who were “cured” this year. Building level services it is. And they congratulated me on my way out. And then he came home in a meltdown because his seat was moved. And then I thought, boy are we fucked for next year–third grade. And then I cried. Again. Good luck to your precious Jack. Oh,and I imagine Camp Stimey is coming down the pike sooner than you think…. :-)

  10. So many thing about public school are broken. Especially this. I want so much for things to be easier for you and jack.

  11. I just had a meeting for my oldest. He’s going to be a 3rd grader next year. Can I say that 3rd grade scares the $#!% out of me?! He doesn’t have Autism, but he’s a bucket of quirks.

    You are an amazing mom and advocate…I hope your boys thrive next year in their programs. As you say, there is hope. I wish our kids didn’t have to fail to get placed in the correct program. That is what happened to my oldest. Such an example of how the system is busted.

  12. I am fortunate that my Princess has such an outstanding IEP team that strives to provide a learning environment appropriate for her.  Birdie, her twin sister, has thus far “not qualified” for special services at school, however, because she is “not disruptive to her classmates and academically above and beyond her peers.”  Her teacher and I have joined forces and have *finally* gotten her a Child Find Committee meeting, where hopefully our arguments will be heard.  Both Birdie’s teacher and I see past B’s big brain to the difficulties she has relating to peers, regulating emotional outbursts, being socially appropriate, etc, etc, etc.  Although we live in a very accommodating school district, it still takes a certain degree of academic failure to convince the powers that be that your child deserves assistance.  I find it disheartening and deplorable that our school has to wait until everyone in my daughter’s class is affected by her behavior before *she* can get services.  Woe is the life of an autism mom…

  13.  The thing is, “high functioning” is something that most people understand. It’s totally easy shorthand to describe your kid. I’ve used it too occasionally.

  14.  For my kid, people don’t understand PDD-NOS, so I call him Asperger-y or “less affected.” For the other end of the spectrum, I usually say “severely affected.” I’ve tried to take my cues from parents and people who probably would object to having their children or themselves be called low functioning. I think “my son is very challenged,” says a lot too.

  15.  I know. Failing first is rough. And you lose that year of education. And you feel crappy about yourself. And your mom hires a therapist to make sure that you don’t want to *really* jump in front of a streetcar.

    I think it would be all kinds of fun to come raise some hell for you guys at your meeting. Are you pretty well prepared for it?

  16.  I feel that way too. I have home schooling in my back pocket, just waiting in case I need it. There are a good number of programs available in my county, but this county also historically fights parents on services. Hopefully this will be the right fit for Jack because taking it to the next step will be costly and time consuming.

    I’m so sorry it’s been so hard for you and your kiddo.

  17. See, Alex will be going into third grade next year and I worry for him.  Things get more challenging, he starts understanding his differences and the other kids get way more sophisticated in their dealings with him, for lack of a better way to say it.  We recently hired an advocate for a multitude of problems and to be honest, I’m not looking forward to next year.  Im just trying to get through the next two weeks.  We don’t have a separate autism program and the school system here believes full inclusion to the death….sigh.  I do hope things work out for Jack and hope to a little sun and summer will help put things to rights.   

  18.  Yep. Rural kids, poorer kids, kids of families who don’t speak the dominant language? Their outcomes are so much worse, not because of their abilities, but because they get screwed by the system.

  19.  Oh, Cheryl, I’m sorry. Start documenting everything. Every meltdown and its precursor. The homework he can’t do. Document how he was successful with supports but not without them. Hope for the best and prepare for the worst.

    I don’t understand how the response to kids having success with the supports they have been given is to take away those supports.

  20. Hang in there and good luck for your third grader next year. That grade is tough, but hopefully he can thrive there.

    Thank you so much for your kind words!

  21. I think I would rather have an “I Won” situation which my son would completely do over the rock throwing and licking everything in sight that my son has been up to the past few weeks in order to get out of doing his work. I read his behavior journal and want to dunk him in hand sanitizer before touching him! 

  22.  I hate that. You have to show how it affects their ability to access the curriculum. So frustrating. Schools are supposed to be trying to teach our kids to be adults, right? That social piece is just as important.

    And to base her services on whether she disrupts the other kids? I agree. Deplorable.

  23.  Third grade is definitively a year where the social divide becomes more obvious. I wish you the best of luck. I’m so sorry it’s so hard. It shouldn’t be.

  24.  Yeah. I hear that. We have some of the other stuff too. That just doesn’t make the blog. :) Although I have to say I read your comment first as “rock licking” and the image made me laugh a little.

  25. I’m so glad Jack is finally getting what he needs!!! I hope he loves it!
    And I’ve honestly never thought about the suckiness of calling someone high or low functioning…you’re right, that’s awful.  I don’t think I have much choice though…nobody seems to understand what “aspergers” is, and if I just go with “autistic” people will either a) not believe me (yeah, I’ve actually had that reaction) or b) think she isn’t as capable as she is. People suck.  

  26. Wow Stimey so well said.  The comparison between “gifted students” and the “special needs student” is another thing we have in common.  It really depresses me how the school systems handle the education of these students so differently. We have many highly trained and well paid special education professionals in our school system but to get your child in the right placement with the right supports takes so much work on the part of the PARENT (and many times also needed is the ca$h to hire other professionals to support doing the right thing for the special needs student) but when you have a child with “gifted” label — getting them into the right placement with highly trained educators is ridiculously easy.  It certainly adds fuel to my anger when I am advocating for my son in IEP meetings.

  27. I just read the first part of this post out loud to my husband, beginning with “Let me tell you why I love Jean” and ending with “THEY HAVE A M-F***G ASPERGER’S PROGRAM!” I am so jealous that you HAVE such a program, even, though I totally started having PTSD flashbacks about IEP meetings. (I am feeling very acronym-y in this comment. WTF. OMG. TTYL!)

    You know we got off the IEP treadmill and it ended up being the right choice for us. But our district doesn’t have the (many) options your does, and it sounds to me like you absolutely did exactly what Jack needed and this year sucked and next year will be better. For what it’s worth, I don’t know a single family with an autistic kid who didn’t say that 3rd grade was a game-changer in a terrible way. So I totally feel you. (And… more flashbacks.)

    Keep fighting the good fight, my friend. Push back. Be loud. Nobody puts Jack’s Mama in a corner!

  28. So sorry Cheryl. Our school district tried to declassify my son this year based solely on his IQ…as if nothing else mattered. Their argument was that based on his IQ score, his challenges are not impacting his education. Education is more than math and reading!   I wish they’d see the WHOLE CHILD and not just numbers. We fought and we won….for another 3 years at least. Jean’s advice is excellent. Document, document, document.

  29. My DS8 (Asperger’s/ADHD) began at an Asperger’s program a year ago March. It has been The. Best. Move. Ever. His anxiety decreased to the point where he lost the AS part of his diagnosis (he still has it, it’s just not as easy to see as the ADHD part now!) last summer. He loves school now, he has friends now. One thing that changed a lot was, home used to be the most structured part of his day. So he’d have all his meltdowns and behavior at school and was pretty good at home. In the AS program, THEY are so much more structured than we are here at home (I have 4 children, 2 with AS, 1 with Down Syndrome/Autism, and an NT girl…I’m structured but school is so so so much more structured!). So his behaviors happen here more. But, he wakes up cheerful and happy to go to school, and our evenings are no longer consumed with homework battles! Now that they are accommodating his dysgraphia, life is so much better (and he doesn’t think he’s stupid any more!).

  30. I hear you and it really stinks.  By the time a kid reaches my school, they have had to fail at several other programs first.  So, along with all the other mental health issues we work with, we have low self-esteems and learned helplessness.  I wish there was a better way.  I am sure there must be a better way.  But, once again, Jack is so lucky to have parents who advocate for him and are tuned in and fight for him.  Go Team Stimey.  Love to you. 

  31. I’m so worried about C’s upcoming year in third grade. I hope the new school is Jack’s game-changer! xo

  32. I’ve always thought of Jack as being an Aspie!  But I do hear you about the asshole labels the school systems use.  I always say Teo is a middle-of-the-road autie.  He doesn’t have a lot of issues like stimming or transition problems but he does have big communication and comprehension issues.

    I hope he thrives at the new program!

  33. We once had to stop all services for 2 months to prove that the boy did indeed need the services in question.  Because he did relatively well WITH services to help him, he didn’t qualify.  In no time, he proved that he did indeed need support services, but by that time, he had developed some negative behaviors and feelings about school, probably cuz he failed everything on his own.

  34. We’re ready. I have all 10 copies of the different iterations of this year’s IEP with me. Best/worst learning experience.
    And no, no streetcar jumping allowed. In this together. All for one and one for all of us.

  35. I’m sorry. It kind of stinks. But I’m so glad both your boys may have found their best schools. I will tell you, Jack sounds so much like my G. It’s kind of scary how similar their lives sound (except for the puking parts) — only we somehow managed to get all the way up to 5th grade with no better solution than a mainstream class with a one-on-one aide. It’s a battle every day, as you know. And I wish there was something else. But I’ve yet to find it. Good luck and godspeed, my friend. Faith, right? It’s all we have.

  36. Oh…..we have walked down the same path…..it took our little guy making “no progress” to have his placement changed to a private school placement. So please know I feel and know your pain. So yes the system is so very stupid….but your boys have one smart mama!!

  37. Much love to you and Jack.  As a teacher I have to say that I also hate the system.  The past 5 or 6 years I’ve been able to buck the system and serve students who were considered “at risk”.  Unfortunately, that is coming to an end next year.  :(  Co-teaching and inclusion here I come.  I’ll be serving 16 kids instead of the 32 I’ve been able to reach doing things the way we’ve been doing them.  Less work for me, but setting kids up for failure isn’t why I went into teaching.  Grr.

  38. Your assessment of our educational system is so spot on!  The system is so deeply flawed, it’s amazing it works for anyone!  I hope Jack likes his new class and is successful!

  39. Jean….it is MCPS. We were firced ti play their game through 2 due process hearings before we decided that the system is backwards. So, we mived to FCPS in Va. Tgey have been great about accomadatiimons and placement so far. Buy un MCPS, we experienced the sam dog and pony show you described. My heart is sending you strength!!! Our kiddos deserve better.

  40. Yes! It is like – “This is building has clearly been successfully built because it is standing up, so let’s just take those support beams away since it doesn’t need them any more, and give them to another building… Hey why did it fall down?”

    Gravity surprises them somehow. Sigh.

  41.  Yes I have a friend whose son was deemed “no longer SP. Ed. worthy” based on his scores on a test – given ONE ON ONE in a small quiet room with an adult. This is a kid with severe social deficits who also cannot handle chaos and noise without melting down!

    Fortunately, due to help from in-laws, she had the $$ to fight the district and pay for his private special school education until they sue for reimbursement, but I am so sad for families that do not have this option (i.e. most of us)!

  42. Oh, babe, I feel your pain! Not from the inside, as Jake was never a candidate for inclusion, his language processing issues being too severe to be able to learn in a regular classroom even with support.  But still I have a lot of friends going through what you’re going through.

    Believe it or not if Jake did have a more Asperger-y flavor of autism NYC actually has a great inclusion program specifically tailored to that – with much smaller class size and 2 teachers (1 sp ed.) and it works so well for a lot of people I know. That said a friend of mine had a son who was doing so well in that program they declassified him and… yeah you can figure out the rest – HORRIBLE year this year. Sigh.

    It kills me that a law designed to keep schools from dumping kids in the warehoused “little more than babysitting” segregated Sp. Ed programs of yore is now being used AGAINST you to keep Jack from the place he needs to be. But I also know that any flexibility and open to individual opinion-ness you build into these laws will be used by nasty school districts to once again screw kids over royally.

    The situation becomes: “Sorry we can’t just use common sense here, because other districts have used ‘common sense’ to do wrong by kids, so we can ONLY use quantifiable metrics to classify and place kids” – but if they’re measuring the wrong and incomplete things? I hate the incredible mistaken idea that “numbers don’t lie” because they so do. You can use statistics to argue ANY conclusion. And I have a statistician friend (on the spectrum himself, btw) who gets so infuriated by the notion that just because something has become a number it’s objectively TRUE. 

    OK enough ranting on your blog now my friend  – And congrats on LTYM-DC!

  43. I’m so glad that Jack will be attending the Aspergers program next year.  It does sound like it is the best environment for him and a place where he will flourish.  

    But, I totally agree that the system’s way of determining that is the best place for him sucks ass.  

  44. My child has no diagnosis, and by all accounts is ‘just fine’ academically. But that doesn’t stop me from agreeing WHOLEHEARTEDLY with your assessment of The System, and believing that it has failed my kid too.   Unless, you know, they were aiming to produce a generation of kids who hate school and don’t see the point.  In which case, System is WINNING!

  45. I can so relate to so much in this post.  My son has ADHD, which doesn’t even rise to the level of having it’s own program.  But my son struggles and the school has basically said they cannot help him unless (until?) he fails.  It’s so disconcerting, so disheartening, AND NOT THE WAY THAT IT SHOULD BE.  His teachers have bullied him and bullied me.  I don’t like it. I’m just existing until the end of the year (12 days!) and then over the summer *I* work with him (at night and on weekends) the way he should be taught.  I want to undo the negativism that his learning has been met with and show him the excitement that is learning.  That social studies does not have to be boring.  That writing – though very very difficult for him – can get better and easier.  I want to show him that he’s smart – because he is – even though this school year and his teachers have been hell bent to show him that he’s not. 

  46. Stimey for president.Amen.
    You rock.Right on…
    I could go on and on… but THIS IS PERFECT.  And so so sadly accurate.

  47. If it’s any consolation, we had a horrible third grade too.  The policy was to separate twins, so C got the “good class”.  A’s teacher was completely overwhelmed with behavior problems (maybe the kids who should have been in other programs?) and the really challenging learners, so shuttled her out of the class for almost every subject.  With A’s shyness and need for dependable routine, not a great situation.  I think it took until 5th grade to really work out, when I insisted that they both be put in the high learner class. 

    Your article aslo brought to mind my friend who teaches 4th grade in a low economic school nearby.  Many parents will not let their kids be part of the available programs due to denial and the potential stigma attached.  It’s not always the system that is the problem. 

  48. It’s so interesting to read others experiences.  For us, third grade was fine, great even.  It was a little bumpy in the fall as it always is but then it smoothed out enough that we were talking about increasing the amount of time that K spent in the gen ed class for 4th grade.  

    So we set that up in K’s IEP meeting in the fall.  And then everything went pear shaped.  4 weeks later I’m sitting in another IEP meeting talking about how we need to decrease the amount of time in the gen ed room, even less than what he was doing in 3rd grade.  It has slowly crept back up.  

    But that was a very hard meeting to sit through mostly because I really felt that part (if not most) of the problem was the parapro that was K’s main support person.  I don’t know if other parents complained about the parapro (she was new to this classroom in the fall) or if K’s teacher just finally had enough or if there was a particular incident…. but eventually the parapro was moved back to the resource room she had been in the previous years.  And things have felt calmer in the K’s classroom.  

    It makes me angry that it took so long to remove that parapro even though you could see after a couple of weeks that she just wasn’t working in there.  And it’s not that she was a bad teacher or person.  I just don’t think she “got” these ASD kids.  She had certain expectations and autism be damned, they were going to follow her expectations.  I know the school/district  had to give her extra training to show they were doing their part in good faith.  But it just made it extra difficult for everyone.  I was seriously thinking about setting up a frozen margarita machine in the teachers’ lounge as my holiday gift/thank you.  

  49. I just want you to know what a powerful post this is. What is so inspirational is how you clearly refuse to give up and  give in tot he school. Your willing to fight for what is best for your children.   As a kid I was both gifted and LD and my parents tried to fight the good fight, but they gave up. I stayed at the same private school for 9 years that was the wrong fit for me, and didn’t provide me what I needed to succeed.  I love my mom and have a new appreciation for her since she past,  but there is a part of me that hasn’t forgiven her for giving up. 

  50. You’re lucky that you have such great schools that really try, and seem in many ways to be succeeding, to help all levels of kids. Our schools SUCK. See: my gifted kid can’t even get a freaking challenging homework assignment, and one o my good friend’s kid, who has an IEP and 504, can’t get ANY HELP from the school or teachers. They say NO  at every turn. But oh those test scores show that the school is great. I’m tempted to pull my kids from testing just so the damn school doesn’t get their superior scores. /rant

    I hope next year is stellar for Jack, and Sam, and Quinn. You need it, Mama.

  51. yes, our county BITES.  I can’t even GET my Aspie-girl an IEP because she “can clearly access the curriculum at grade level” – she gets A’s and her test scores are through the roof. So she’s in private school,, which costs more than we can comfrotably afford, and even there it is touch and go, with a  class size of 10.  maybe we should start an Aspie- PDD – HFA specific home-school group and co-teach / rotate things…  Only half kidding about that.

  52. Great post, Stimey Mama. You made so many good points. I too hate “high functioning” or “low functioning” because it doesn’t really indicate much. I really really hate when people refer to Asperger’s as “mild” autism… cuz there ain’t nothin mild about my kid’s Aspergers. So i tend to refer to mine as “highly verbal” but in many other ways, he can be not very “high functioning.” I appreciated Jack’s power play with the teacher… I think sometimes they just need to “win” to stay with the world in some way. One day, when I had finally had it with my DS’s defiant behavior, I instituted a really serious token economy where he had to earn everything in his dear sweet little life… except healthy food, a bed, and clothing. (But he didn’t really want healthy food or clothing, so he didn’t see that as an automatic win.) When I was madly cleaning out the play room to remove access to his toys, he looked at me and said, “I don’t know why you keep trying all these programs. You know they never work.” My eyes bugged, and I thought “Game. On. Dude.” I always laugh when I think of that day! And, it actually was a really good home program and it worked and right now we don’t need to use it, but I always have it in my back pocket…

  53. I’ve heard of Child Find, but have no idea how it works. Can anyone enlighten me? We’re moving to a local charter school for next year, hoping the fabulous things I’ve heard and seen are the real deal. My oldest starts infamous 3rd grade next year. We’ve spent the past 3 years just attempting to get them write a 504 Plan. The kicker is every teacher has made more than a handful of accommodations, we just want them in writing, especially with him changing schools. We have been repeatedly told, ” What problem? He’s at or above grade level.

  54.  Totally. And it’s so hard to find out what options are available. Good luck finding the Asperger’s program on the school website, but the gifted, language immersion, and every other program is listed right there in the sidebar!

  55.  Getting off the IEP treadmill sounds awesome. Sadly, we’ll be running for a while. Never fear, though, we’ll keep on pushing. Love you!

  56.  Right? You totally see the results of the this whole run around. We’ve hired mental health professionals to try to keep Jack from getting to that low self-esteem place regardless of placement. Keep your fingers crossed for him.

  57.  He’s kinda Asperger-y. But he’s technically a PDD-NOSer. It’s so funny how they all have their own little mixture of things.

  58. It’s so funny you say that because I’ve always looked at you and G to see how things will be in a couple of years.  You’ve given me a lot of hope. It’s hard, and I KNOW you have your share of struggles and I also know that Jack isn’t G, but I watch y’all carefully. :)

  59.  You’re totally right about the valid reasons for LRE. Absolutely. And that is important to keep in mind. You’re right. But, oy. :)

    And congrats to you too! And on the NYT! I’m headed over there later!

  60.  Oh, I’m so sorry. Because school can be so exciting and so fun. I hate hearing about teacher bullies. We have been so lucky (knock on wood) to not run across any of those yet, but I know that they are unfortunately out there. I hope that you are able to repair some of that damage.

  61.  It is all so complicated, isn’t it? And, yes, there are definitely people out there who fight services and labels. I hear those stories too. And they’re right. There is totally a stigma. It’s hard to find a good answer, but that’s why I’m trying to teach my kiddo to own his neurodiversity.

  62.  Oy. School politics. I can understand why you would be so angry. Any chance you can get a two for one deal on the margarita machine and keep one for yourself? :)

  63.  Thank you so much, Corey. It means a lot to me to hear from people who have been through this sort of thing themselves. I promise you that I won’t give up on Jack. I promise.

  64.  Right? It’s so hard here, and we’re one of the better districts. It’s horrifying. And you are so right on about there needing to be differentiated instruction for all kids—at least to some degree. It is so frustrating.

  65.  Ha! I love it! Don’t underestimate these guys, right? They are paying attention every second.

    Also, I’m going to put some thought into this token system of yours.

  66.  Once you are in the public school system, you have to go through the school system instead of ChildFind. That’s a tough one, if he’s been getting accommodations that aren’t officially documented. I would ask his teachers to write down what they have been doing in a letter or something if the school isn’t willing to give him a 504. I would also document all his troubles and how they’ve been dealt with.

    My oldest has ADHD and doesn’t (yet) need a 504, but we’ve had meetings and I’ve made sure that his teacher makes notes on official documents about what informal accommodations she gives him in case he ever does need something codified, or for when he goes to another school.

    It’s hard too when they’re at or above grade level. That was Jack…until this year. I wish you the best of luck. Hang in there and keep fighting.

  67. It’s been so long since I commented anywhere, including your blog, Stimey… but all I can say is that Tyler has his initial IEP evaluation set for June 6th and I’m terrified.
    He wants to be a damn doctor. I keep hearing lovely stories of (albiet socially awkward) successful adult Asperger’s physicists, surgeons and whatnot, but keep hearing of difficulties within the education system when it comes to kids with challenges, specifically kids on the spectrum. I almost feel as though it all sits on my ability to advocate for him and know what’s best for him to get him the right amount of services (not too much and not too little) and I feel woefully inadequate to that task.
    You are effing super mom, you’re my hero. I hope you get exactly what Jack needs and exactly what you want for him. This is a scary task.

  68. i hate this for you. but mostly i hate it for him. and for all of our kiddos who have to be set up to fail to be where we all knew they needed to be in the first place. but he has you. and for jack, that makes everything different. you did what you had to do. he’ll be where he needs to be. good job, mama. 

  69. My sister is a special education teacher.  I am constantly asking her questions about how to get the best services for my son.  Her answers always come down to LRE and goals on an IEP.  I find it so frustrating.  I often feel no one is even LOOKING at my son for WHO HE IS and using HIM to determine best services.  Don’t get me wrong, his teachers are great and we live in the Washington DC area and have great schools and great services.  But you’re right, the “system” sucks.  There are too many rules and regulations. 

    My son starts 3rd grade next year.  Dreading it.  It is the year my oldest started on ADHD meds b/c he was having such a hard time.  (Although he didn’t qualify for any services….just get him tested and get him on drugs, please!)

    You are such a great advocate for your kids!  Hope Jack does great in his new program.

  70. My fingers are crossed for a great year next year!! FWIW, the Asperger’s program this year for 3d grade has been for the most part a big success for our “Aspie.”  Some of the kids are classic Aspergers and the rest are a mixed bag of quirk.  But there is a community of acceptance and warmth that has made a big difference.  Here’s hoping it makes a difference for Jack and you too!    Stacey T. 

  71.  Thank you so much, Stacey! I’m hoping that Jack will regain a more positive school experience. I appreciate your help with telling me your experiences so much!

  72.  If you look at it as a whole, you will never be able to take a step. Take it one chunk at a time, but keep a side eye on the future. You can do this. You can. You will learn as you go and if something isn’t working, you can always call another meeting or work on making an adjustment. I didn’t know ANYTHING when I started. You’ll get there. Tyler will get there.

    I always recommend the book “From Emotions to Advocacy” by Wrightslaw as a fantastic starter book for navigating IEPs. And if I can help you out at all, I will.

    Hang in there and GOOD LUCK on the 6th!

  73.  The really frustrating thing is that in a class with 22 kids and one teacher, I don’t know how she can be expected to even KNOW what his goals are, let alone work toward them.

    Good luck to your son next year. I hope he hangs in there. And at least you have an inside eye on the system, right?

  74. I like your description of LRE, Jean. Should put that in the IEP. God I had the process, it will suck the life out of you.

  75. Stimey, I have enjoyed reading your blog for a while and I hope the HFA program works out well for Jack. I also hope I might run into you guys, since my son is at the school I think Jack will be going to (though he isn’t in the HFA program — my interests in autism are professional rather than parental). Good luck! 

  76. Wow. Your juxtaposition of the asperger’s and gifted programs, and the explanation of least restrictive, is terrific. We’re not in either situation, so it’s not something I’ve given a lot of personal thought to, but you make a great point there.

    Here’s hoping you got the good place for Jack.

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