Wednesday, February 12, 2014

Rage Against the School Machine

Ever since we took Faith to the Kennedy Krieger Institute (KKI) back in the beginning of December, we have been pursuing the course of action they recommended. She was already in private speech therapy because the public school was only providing 90 minutes of service per month, and the KKI report recommended that occupational therapy (OT) be added to her school services.

Here we are in mid-February and I still haven't been able to get the school to add OT to her education plan. I had to ask five separate times before they finally agreed to schedule an IEP meeting where we can formally request an assessment. This whole time, they've been pushing back with "Well, we don't really think she needs it."






Meanwhile, we have her in private OT at the same place where she gets speech therapy. It's been great so far, but during her assessments at the private therapy place, they recommended that she have 2 one hour sessions a week. Currently, we only have time for one because Faith is in "school" 4 days a week and we already have to factor in 2 speech therapy appointments. Even with one day of OT a week, Faith has made significant improvements. She can now put on her own jacket and snap it up (!) and they've been working on pre-writing skills so she can learn how to appropriately hold a crayon.

At the public school, they've been "working on" getting Faith to learn how to put her own coat on for over 3 months with no progress. It took three OT sessions for her to get it.

Even though I told the school that I wanted to be present for any assessments done on Faith, the conducted an informal assessment without me and sent home a letter stating that Faith is totally average in terms of motor skills and doesn't need any services. Nice try, but we aren't canceling that IEP meeting for next week and we're still going to make you do the formal assessment.





It's pretty clear that they have made up their minds that Faith doesn't need OT services (and I'm just sure their testing is completely free of confirmation bias), so there is little to no chance we're going to be able to achieve our goal here.

Luckily for everyone involved, my husband is coming to this IEP meeting with me because my opening question was going to be "What exactly do you see as your value added to Faith's education when we have to seek private resources to meet all of her needs?" While that question may be blunt and rude, it's not unfair. Right now, this is how it breaks down:

For social interaction: We pay for her to go to a private preschool program two days a week because the public school classroom has no typical peers.

For speech: She goes to private speech twice a week for 30 minutes each time. At school, she gets 90 minutes per month, and if there are snow days, they do not make up the time at a later date.

For occupational therapy: Private therapy because as far as the school is concerned, she's totally fine even though experts at the freaking Kennedy Krieger Institute provided them a report outlining why she needs this therapy and what specifically she needs help learning.





So what DO they do at this public preschool? As far as I can tell, they spend an inordinate amount of time discussing the seasons and holidays and consuming junk food. They send home copies of the curriculum and a daily report of activities, so that's the source of my information here. I don't understand the preoccupation with seasons and holidays. Are learning shapes and rudimentary math passe now? I get that it's not what they learn that matters so much as introducing the classroom learning process, but my God...do we really need to waste time making fucking Groundhog Day cupcakes? They are only there for 2 hours twice a week, so is that really the best use of the time? It's not that I'm against a treat occasionally, but it's literally every week:

"We decorated cookies today and read a book about Gingerbread Men!"

"We ate popcorn today and talked about movie theaters!"

"We made ice cream today for no goddamn reason!"

"We made cupcakes because they can't talk when their mouths are full!"


As you can see, I'm not having warm and fuzzy feelings for the public school program right now. We haven't made any decisions yet, but we are exploring options of private school programs for next year. I'm also considering cutting her down to one day of public preschool a week so she could have an extra private OT session that morning instead. It's not like she'll miss out on any critical curriculum (but what kind of sugary crap WILL they make for St. Patrick's day?!) but I'm not sure they'll "let" me do that. I'm pretty sure I'm already "that parent" by now, so I have nothing left to lose by proposing it at the IEP meeting next week. Well, actually my husband suggested that I should just be quiet during the meeting and let him talk. Apparently, I have a problem controlling my "tone".






What's your biggest source of rage at the moment? Nothing ticks me off more than when I think something is impeding my kid's education or ability to catch up developmentally.


Does anyone have experience with having a kid with special needs (like a speech delay) in a Montessori school? 


Do your kids go to a public or private school? 

43 comments:

  1. I, obviously, have no involvement in that school system at all and I still want to slap the entire staff on Faith's behalf.

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  2. I always was confused why parents werent allowed to know about testing. I got my 'wrist slapped for telling a mom that her son had been tested' ... It was 'confidential'..... Ummm.. it her son.

    One thing I've learned in the public school setting here.... If you have a big differential between your 'potential' and what you do, then you get help. Frustrating!

    I thought that if you request an iep meeting, they have 30 days to give you one. You may want to have that in your back pocket.

    Good luck fighting the system.

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  3. Wow. What a bunch of dicks. My 15 month old is clearly not in school yet, but these sorts of problems are just one reason I've considered private school or homeschooling. More the former, because the latter might turn me into that woman from The Yellow Wallpaper. But then private school might turn me into the corner bag lady, because $$$$$.

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    1. +100 for Yellow Wallpaper reference :)

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  4. I am pretty sure I have PTSD from the IEP process, and my kid is only 5. We actually moved to a different city because of issues with getting appropriate (and state-mandated) speech and OT therapy through our local public school system. I have another IEP meeting today, and after reading this, I kind of wish I could take you with me, as backup!

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  5. Wow. That's just ridiculous. It is also the kind of "investigative report/human interest" story that would appeal to our local news stations here. I'd complain to the superintendent and principal, too.

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  6. I could write you a novel about my experiences taking Greg to the family doc about his speech delay to getting him signed up for preschool in the fall. I'm in Canada, so it is different. The process has been slow, BUT people have more than helpful and supportive-overall it's been a pleasant experience. His preschool will be funded and his class of 12 will have two teachers, a speech therapist, a speech pathologist and an occupational therapist in the room at all times. I'm sad that he'll be going to school, but I think it will do wonders for him. Keep fighting for what she needs!

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  7. Ugh, that SUCKS. I'm glad you're such a great advocate for your kid, but you must be exhausted!

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  8. Public PRESCHOOL? We don't have free preschool in Oregon. Free school doesn't start until Kinder.

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    1. The public preschool is for kids with IEPs, so your state may have such a program but if you don't have special needs kids you may not be aware of it.

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  9. My son had moderate speech issues (on a scale of mild, moderate, severe). He went to speech therapy through preschool and kindergarten. When he aged out of the public program in Grade 1, they sent a letter to the school saying that he needed to continue speech through the school system. His teacher asked the admin over and over again when he was going to be seen by the traveling speech therapist that was only at the school one morning per week. They finally told her that his problem wasn't severe enough, and he was never going to be seen at the school. We went the private route then.It was so frustrating that he couldn't access the services he was entitled to and needed to have, but it wasn't even the school's fault, rather the Board for having one therapist for something like 10 schools.

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  10. I don't think you should be quiet at the meeting - you have every right to show them every tone of your voice that you choose! That angers me, and she isn't even my child. Of course, I'm a bitchy bear when it comes to my own daughter.

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  11. I feel enraged just listening to this!

    Can you explain for me this whole concept of "public" pre-school vs. private? Does "public" mean that it is funded by the government and you don't pay personally? I've never heard of such bullshit before the age of 5 before "real" school starts!

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    1. We don't pay tuition for the public preschool. It is funded by tax money. It's "free" as much as any government service funded by taxes (which we pay).

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  12. Does your school system have an early intervention program? My mom worked in early intervention (babies to 4-5 year olds) for 30 years and did home visits where she would go to the kids houses for an hour once or twice a week. And this was all through the public schools. Maybe you should move to that school district. Heh.

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    1. Yes, we have an early intervention program (Infants and Toddlers) for ages birth to 36 months, but once they age out of that, they get an IEP and go to this public preschool program if they qualify.

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    2. I think in most states, the state-funded Early Intervention program stops now at age 3, and then the public education system is supposed to (allegedly!) take over the process, so that 3 and ups can get access to services at their local public elementary school even though they are not enrolled yet for kindergarten. Allegedly. On paper.

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  13. As a public school teacher I appreciate that you're staying vigilant. If you say that your husband is your lawyer instead you'll get anything you effing want.

    At the exact moment I was writing I wasn't raging about anything and that my morning was going well my dog threw up his breakfast. So there's that.

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    1. Well, I hope the dog had the decency to at least eat the vomit to save you the clean up :)

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  14. Kim brings up a good point - school districts are only supposed to provide special education starting at 3. So while socializing with typically developing peers may be best practice, the public school district is not required to provide you with said typically developing peers. My former school district did have an inclusion preschool program in addition to the "preschool disabled" class -- but they were able to do this by offering a set number of spots for reasonably priced preschool program to the general population.

    I wasn't as close with our OT, so I don't know how their eval process works entirely, but to be fair, parents were not allowed to be in with the kids for psychoeducational evals or speech evals. Test item confidentiality is an issue as well as the possibility of parents jumping in to encourage their child to respond or providing additional prompts or directions that break the standardized administration of these tests. Our OT used standardized measures as well. There were several students I was aware of getting private OT but not in-school OT. The key for in-school OT is to argue the educational relevance.

    Not at all giving your district a pass, or making excuses for them. Just perhaps bringing some new shit to light. I'm sorry to hear you're still battling with your district at this point in the school year.

    Actually your state DOE sucks too. I tried looking up Special Education code for the state of Maryland, found the link for Early Childhood and got 404'd. Real helpful.

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    1. Yeah, we get that they aren't required to provide a typical peer component, which is why from the beginning we had her in the private preschool as well.

      My husband was allowed to be present for Faith's private OT evaluation. We're pretty good at sitting still and shutting up, but we do like to see the testing. They are using a standardized test, but they are getting different results from the standardized tests done at KKI. I'm more inclined to believe our county is at error rather than KKI. Right now, Faith lacks the fine motor skills to do things like draw a circle and she doesn't have the control to trace letters. That seems to be educationally relevant to me. What they are basically telling us is that Faith isn't delayed ENOUGH yet, but as she gets more and more behind, then she may qualify for services. Understandably, we don't want to wait for that.

      It may not be the public school system's "fault" that they aren't providing the best educational options to Faith. I understand all the layers of bureaucracy that limit them. That's why we are thinking about private school instead.

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  15. I'm a bit confused here. KKI is concerned b/c she lacks the fine motor skills to draw a circle well or trace letters? I just found out from my six year old's kindergarten teacher last week that he lacks the fine motor skills to draw a circle well or trace/write letters. We were given a pencil grip to correct his grip and told to work with him more to help him build the muscle tone required. So, if Faith needs OT to work on these skills, shouldn't a six year old? No one has suggested anything of that sort for him. Just a discipline chart (because apparently he is acting out during the day time activities (such are writing and language arts) that require him to have better fine motor control).

    I'm just confused b/c I am not aware that anyone is worried about his ability compared to his potential and I would think a kindergartner being unable to do this is worse than a pre-schooler being unable (I don't mean any disrespect by that or any lack of sympathy to your situation...he's just got a couple years on her).

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    1. I can't speak to your child's needs, but for Faith she has a neuromotor abnormality, which basically means she has low muscle tone. This is why she needs help with things like learning how to grip a pencil. It will take her longer because of this abnormality and she'll need lots of practice.

      If your 6 year old is having fine motor problems, I'd think the first step would be trying to figure out why and that would start with your pediatrician, not the school. These problems usually aren't isolated (like problems with grip are usually paired with something else) or maybe the doctor can get to the root of the problem and it may not be muscle tone related at all.

      If you find out that he does need services, you'll have to ask for them. It's like Beetlejuice. He doesn't just come unless you say his name three times.

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  16. The answer is...

    PERCOCET!

    Did I get it right?

    After nearly 20 yrs and 10 kids of navigating preschool through college with some IEPs and some therapies and lots of "issues", I feel confident in saying NO ONE will advocate for your kid as strongly as you will. The public education system at the helpful level (non-administrators) is overworked and underpaid. They're doing the best they can (though maybe not performing up to their potential). Yes, it's funded by taxes...which keep getting cut, and less of the less money goes toward education. There are no clear cut answers, unfortunately. Keep advocating for your girl, and try to keep it calm. She needs you loving and grounded more than anything.

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    1. Keeping calm is my husband's forte. That's why he's the better half lol

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    2. Mine used to be, but I've contaminated him.

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  17. Irritatingly, I just had an IEP meeting yesterday for Gabby, and they basically told me that although her teacher feels she is performing below grade level, she actually is not - her test scores in class are all normal. And unfortunately for her (first year) teacher, being super fucking slow at doing EVERYTHING is not enough of a reason to put her in special ed, and for sure not in first grade.

    Assholes.

    Anyway. Until her slowness (in moving, not in brains) adversely effects her school performance beyond being annoying as hell, they won't do an IEP. So she has to be doing poorly for anyone to want to help fix the problems. Awesome system.

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    1. That's exactly what we're dealing with. She's not currently behind enough and just because we have a doctor's report insisting that she'll continue to fall behind without interventions, they require us to wait until she's good and delayed before providing services...even though she'd need less if she got it earlier.

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    2. Heather-
      not sure if you subscribed to comments to even see this- Can you/have you pursued a 504 plan for Gabby??

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  18. As a general education teacher I get frustrated with the IEP testing process. I've brought kids up for testing or suggested for parents to do it, because then they have do it within 30 days. Often, they are way below grade level and somehow don't qualify!?! So frustrating. I've had amazing resource teachers that will find anything to get them help though. Keep fighting them because obviously the OT was beneficial to Faith and you have to go with your gut.

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  19. I'd really consider going all private. I grew up in a fantastic public school district...if you didn't have special needs. I can't name one kid I knew that was in the SPED program growing up who has a high school diploma. I can, however, name a few kids whose parents pulled them out of our public school and put them in a faith-based school in town and they all graduated. It seems like you're already coming out of pocket for a large chunk of her education anyway so, if I were you, I'd definitely look into the private resources near you.

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  20. My daughter starting going to preschool when she was 3. No "public" school, we paid for it, and I don't recall testing of any kind. She is in public school (2nd grade), and other than super hard to read handwriting (because she is too much in a hurry to print nicely), there are no issues. She has been really lucky to have hands-on, INTERESTED teachers. Last year, A invited her teacher to come to her gymnastics meet, and he actually came. So sweet.

    So... after all that rambling... if public isn't cutting it and you can afford private, go that route until you feel comfortable with her education.

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  21. This stresses me out just reading this. I'd LOVE to be a fly on the wall during your meeting. I don't care what your husband says, your opening line is PERFECT!

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  22. If I were you I would bring a tape recorder to the IEP. It is well within your rights to do so--the school will probably scramble to find one for themselves and threaten to cancel the meeting if they can;t find one but it can really change the entire tone of the meeting. I work in public education/assessment and hate to see anyone being denied by services. You may also want to look into what your state's policy is on private school scholarships. In Florida we have something called the McKay Scholarship and if a student receives exceptional student education for an entire FTE period in public school (basically nov-feb of one calendar year) they can apply for a private school scholarship.

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  23. Special ed teacher myself and I have a kid with an IEP...double whammy.

    The district has 30 days after you request an IEP meeting to hold one. No excuses unless you waive it in writing. They are allowed to decline testing if they don't think the child has a problem. And, at least here, the child has to be at least 2 years behind developmentally to get special ed services other than speech. *And*, for something like OT, the district won't provide it as a stand alone service. The child has to show delays in learning as well as in fine motor control in order to get OT. So if she's just qualifying for special ed services under speech (like mine is), she won't get OT through the district. It sucks as a parent because you want what is best, but the district isn't required to provide the best, just the minimum that is legally required for the student to show progress over time. As both a special ed teacher and a parent, that part really sucks.

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  24. Eff them. Your tone seems perfectly appropriate given their jackassery

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  25. Wow…I think you are right to be seriously angry…does she have to go to the public preschool (i.e. is it required if you want to keep her IEP, etc? sorry, don't know much about this yet, although F will likely qualify for an IEP in kindergarten)? It does sound like a waste of time if it's keeping you from having enough time to go to private OT sessions.

    I can't say enough about how much OT has changed all of our lives…and it sounds like it's doing the same for Faith. We are now paying completely out of pocket, which sucks, because our insurance has "run out," but it's a necessity for F right now.

    I looked at a Montessori preschool for him and although it was very impressive, i didn't think it was the right fit for him, as he thrives on a LOT of structure and there's more "explore your interests freely" emphasis in montessori from what I gathered. But the teachers are generally highly qualified and I know several people who are very happy with the montessori approach.

    Hang in there and good luck!

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  26. Yeah, being a parent sucks sometimes. No advice, just commiseration.

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  27. I didn't have issues during the early education years, but we had serious issues when my oldest son was in high school and the people employed by my school district who were supposed to help us were worse than useless: the school psychologist who didn't show up to any of our meetings, despite my repeated requests for her to attend; the totally unhelpful guidance counselor; the vice-principal who thought in school suspension would be the answer to my son's problems. My son WANTED to learn, but he felt so alienated and frustrated in their idiot system that he took to constantly skipping school and failing all his classes---a kid who had gotten straight A's through middle school. So we allowed him to drop out of high school and sent him to the local community college instead, where he did very well and transferred to a four year college and ended up finishing his bachelor's degree at age 19, oh and he was also a national merit scholarship semi-finalist, but the stupid idiots at our school could only see him as a discipline problem. I am still SO angry.

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  28. Well I won't share my opinion on public schools on the internet bc I got bills to pay, but this sounds exceptionally bad. I can never imagine anyone at my school treating a parent this way. The IEP is a legal document so they have to give her 90 minutes regardless of snow days, otherwise they are out of compliance and can face consequences, unless it's different in preschool or something. When parents and schools don't agree there is some sort of third party arbitration you can go to that I am forgetting the name of right now, but that sounds like a good idea.

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  29. I hesitate to offer an opinion because I think I'll be a new recipient of your rage, but here goes. I have 4 kids. I'm an American living overseas. The public schools are not so good. There is no free preschool. We send/have sent all of our kids to private preschools from the age of 2 or 2.5

    Every single private preschool has recommended our kids need a variety of therapies - he hates the sand, he has sensory disorder! he needs OT! he slumps and his core is weak, he needs physio! she holds the paintbrush wrong and she needs fine motor skills! he can't hang upside down on the monkey bars and speak clearly while he's doing it, he needs physio, ot, AND speech therapy, and so on. OT is a huge business here and there's not a mom around who doesn't worry if she's not doing enough to make sure her child doesn't fall behind...

    We've done some therapies, ignored others and the weird thing is, the kids all catch up. Some milestones kids lag behind and some they hit ahead of time and some they are right on track. I think you must trust your instincts and advocate for your child but at the same time you also have to relax and keep things in perspective (easier said than done I know). I'd keep her in the public preschool - it really is just supposed to be a socialization time not really learning at this age - and then pay for some private therapies that get results - gymnastics is supposed to be excellent for the core and more satisfying than paying a therapist to roll your child around - unless of course private playschools ALSO include therapies free of charge? and then that might be a better option.. Good luck with this all and with your back!

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    1. The public preschool doesn't serve to meet that "social" component because there are no typical peers there. That's why we send her to a private preschool part time.

      Also, we can't just wait for her to catch up. We know (and have a diagnosis) that there is something wrong with her, so she needs speech and OT. It's not just a neurotic parent thing. That's pretty much like telling someone with fertility issues that if they'd just relax, then they'd get pregnant.

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  30. I had to pay for a private speach therapist because my son was in AIG and the students can't recieve two special classes.

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