a new level of confusion

Luke was evaluated for Special Education Services/an IEP back in 1st grade in late 2008-early 2009. He was denied inclusion in the program March 2009. I contacted the county Board of Education and inquired about what else we could do, short of a formal court appeal of the decision. She offered to have someone from her department take a look at him again. He was still denied.
The process left me battered and thoroughly confused. For the life of me, I couldn’t wrap my brain around how it was even remotely possible that my struggling child didn’t qualify for special help in school. He was constantly misbehaving in class, couldn’t finish his work, and you couldn’t read anything he wrote, not even his name. And yet, he didn’t qualify for help.
When I think about it again now, almost two years later, I just stare at the dust in the windowsill, gears spinning, and still don’t reach any understanding. They tried to explain to me how he didn’t qualify under the law… more than once. And each time it was like being a child again and trying to understand death or some other complicated grown-up topic, hearing the words as it’s explained to me but not comprehending it.
So now here we are again at the precipice of this maddening process, this Evaluation for an IEP.I still don’t understand the process. I know they have 90 days to evaluate since I wrote a formal request. 90 days is more than an entire grading period. I know they still have to put him through the “at-risk” team before agreeing to services, even if he seems to qualify. A group of the school staff will discuss his needs with the teacher and suggest interventions to try and then revisit every couple weeks. If they work, he won’t get special education services, if they don’t work, he will still be considered. This is all I know.
I was asked to attend a meeting on Nov 4 with the special education teacher at Luke’s school and his classroom teacher and, I think, the school psychologist. I have no idea what this meeting is or what to expect. I was asked to bring his latest IQ test scores in the hopes they can use it rather than test him again. I have mixed emotions about that. He tested higher the second time on the private test, now in the Gifted range, but they had denied him on the original, lower (high average) scores. An IQ test should not be a measure of success though. I made this argument the first time we went through this process: if his IQ scores are really high and his classroom work is much lower, doesn’t that mean there’s a problem, a disconnect? He’s not fulfilling his potential. He’s not enjoying success in the classroom. But tangled in the red tape of it all is that ugly beast, “good enough.” He’s not failing so he’s okay. {ugh}
But, unlike the last time, he is failing. He is failing Writing. His teacher and the 504 Coordinator have agreed he’ll get a “D” on his report card instead of an “F,” but his teacher says he’s failing. No ifs, ands, or buts about it.
Failing.
How does a Gifted IQ child end up failing any subject? He has a learning disability and needs help, that’s how.
And so I enter this rip current once again without really knowing how to swim. I know my child needs a life jacket but I don’t know how to acquire one for him. And I feel like the keeper of the life jackets is determined not to give him one. That sounds dramatic, I realize, but it’s exactly how I feel. I feel like IDEA, the law to protect children with disabilities, is designed to help as few children as possible. They don’t take a look at how a child qualifies but they go through a testing process to show how the child doesn’t qualify. It is so backwards and asinine.
I almost don’t even understand what I’m asking for, oddly enough. I am asking that he get services and an IEP to help him succeed in handwriting and the writing process, as both are a struggle for him. What does that get him though? If he has a disability (dysgraphia), it won’t be cured. He needs technology and someone to work with him in a very small group or one-on-one to complete these tasks. As I understand it, to get a staff-person’s time allocated to a particular child, you have to qualify for special ed. If he is granted special education services, then what? He gets an IEP. Okay. Beyond knowing that it stands for Individualized Educational Program, I have no idea what it really is or how it’s structured or how to be sure it’s right for Luke… {breathe!}
Luke is using an AlphaSmart in the classroom now (fortunately his teacher happened to have one in her classroom and it wasn’t being used). It is helping him to produce legible work. He is willing to use it for the most part and it has been a very positive change. They have also loaned me a Zaner-Bloser Cursive Handwriting Workbook to start teaching him cursive, as the fluid motion of cursive is often easier than printing. We do one or two pages with homework each weekday but learning cursive is a very long process. If it were just a handwriting problem, these accommodations under his 504 Plan would be enough.
But it’s more than just illegible handwriting, it’s definitely dysgraphia. Luke struggles with the writing process as well. He can’t organize his thoughts and put them on paper. He can tell you a brilliantly imaginative story orally. Then asked to write down that exact story, he immediately states, “I can’t,” and gets very frustrated. He really can’t. He doesn’t know where to start. Even if he recites the first sentence or two from the story again, he cannot then immediately record it on paper. It’s not just the physical process of writing that is tripping him up but the planning, organizing, and most of all, processing deficits that making the writing process nearly impossible for him. I am not sure what they will do for this if he gets services this time, but I’m hoping it’s one-on-one instruction and more technology (like Kidspiration software that breaks down the writing process and makes it more visual). He has great ideas in his head and we have to figure out how to help him record and share them.
I’m swimming in a lake of very dark water and I’m already getting tired. What was the evaluation and IEP process like for you? Please share your story!

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom.
A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom’s view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

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Related posts:

504 plan, adhd and school, classroom accommodations, dysgraphia, learning disabilities, Penny Williams, school failure, special education (IEP) ·

About the author

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom. A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom's view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

33 Comments

  1. Laurie says:

    My niece has dyslexia and dysgraphia. She used to tell me her stories and I would write them down for her, and the teacher allowed that. I don't think they had an IEP for her, it was just a good teacher. I wish you the best of luck! Katie (my niece) is now an excellent writer but it was a long time coming and even now the mistakes she makes are truly funny – sort of like Yogi berra funny. She's in college now and doing extremely well.

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  2. samantha says:

    I began the “process” of requesting an IEP in Kinder. My thinking was ok, he has a medical condition that is affecting his ability to learn, therefore, he should qualify. No one really took me seriously. Again, in first grade I began the process and pushed and pushed and pushed. My son struggled in reading so they offered him LAP (learning assisted program). When that did not give me the results I wanted, I pushed for OT since he struggled just holding his pencil. After LOTS of phone calls and being a very pushy mom, he finally was accepted for Writing and OT. In 2nd grade when his behavior became so out of control, that also was added to his IEP. Thank goodness for that, because now my son has legal protection when he misbehaves in school. You might want to ask about Specific Learning Disability (my dau qualified under that because her ABILITY was so much higher that her PRODUCED WORK). Good luck!!

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  3. Oh, Penny, I feel for you.
    We went through the IEP process last year and were denied because our school district has a wait-to-fail model in order to qualify for exceptional children's services. LittleJ's issues were the exact same as your son's. Exact.
    Now he's in 2nd grade with a great teacher and I can see that we're getting a repeat of what happened last year despite all her hard work and modifications.
    He doesn't like school, he thinks everyone thinks he's stupid, he thinks he's stupid, and he knows he can't behave.
    I am really at the end of my rope with all of this. One thing we've done is gone private: he goes to OT weekly (the OT eval said he definitely needed handwriting help – the school ignored this). We are lucky b/c our insurance pays for it.
    Where we stand now we have 2 choices: ask for a re-eval, or homeschool. I'm really thinking hard about the latter.

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  4. Anonymous says:

    I'm so sorry you are going through this. I completely understand where you are at as we have been there. Our only way out of this same situation, was to obtain a formal, written evaluation/diagnosis through an independent source, which we then took to the school (including the Director of Special Ed. at the District Office) and told them that if this did not enable us to acquire an IEP for our son that we would pursue the matter in court. But, that outside entity must provide a diagnosis that fits the school's criteria – like PDD/NOS, for example – I'm not sure if Dysgraphia qualifies – does it?? It's total bs to have to dance around like this – but schools are so disgustingly rigid with their “red tape” – especially in light of all the budget cuts/funding issues. As I understand it, while ADHD is on the DSM IV, it does not qualify your child for “special needs.”

    Our state (California) also has a free advocacy service that we used for help with the wording of the letters that we wrote, and with what we would say in our meetings. We now have a psychologist that acts as our advocate when we need her to – she comes to our meetings and helps with the development of goals, etc.

    I don't know if your state offers this service, but you might call this organization and see if they will help you out with some advice over the phone. The organization is called TASK and I'm not sure if I can share their link but I'll try. If not, it is TASKCA dot org (Task California dot org). I don't know if I could have figured this process out without them!

    http://www.taskca.org/abouttask.html

    But I will say this, even with an IEP in hand, from year to year, there is no guarantee that any one teacher will even consistently follow your plan (or is even capable of following).

    My son is in 5th grade now,and we managed to get him a one-on-one aide; he uses an alpha-smart (but hates it); and lots of times his teachers have allowed him to dictate various writing projects to me and I will either write it or type it for him. Some years we have had excellent teachers who will bend over backwards – other years, not so much. Many teachers have absolutely NO CLUE how to work with kids like ours, nor are some even interested in changing their style of teaching to accommodate one kid. I've had to be diligent and do as much as I can from home to make sure they know I am involved in his process every step of the way.

    The stress is horrible – along with the worrying. Again, I'm sorry you're going through this.

    Julia L.

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  5. Anonymous says:

    This post has been removed by a blog administrator.

    Reply
  6. Lisa Kaye says:

    Penny, thank you for your post! This is a common plight of advocating parents. I am about to go into the ring again, and I dread the fight. Ironically, my son qualified for an EBD version of IEP last spring because of his mood disorder, and we were going to weave in what he needed for ADHD. Now, as I watch him fail 4th grade already in October, I fear we've got it all backwards. His accommodations address his anxiety, but perhaps his anxiety is a result of an information processing disorder like dyslexia or some other that we're NOT accommodating for. I have put in a formal request for further testing, and I'm girding my loins.

    I find it completely demoralizing that our children have to fail to prove they need help. They have to slip off the cliff before someone will give them a hand up, and then it's too late, they've fallen too far. All you can do is hope there's a net at the bottom. There often is – it takes the form of drugs, jail, gangs, etc.

    Stick with it Penny! My son would not have qualified in 1st grade as he did by the end of 3rd, and now we have a foot in the door and I won't let them ignore me. I'm going to be the peskiest parent they've ever seen if I don't get him help! I feel a battle cry coming on! 🙂

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  7. dmd says:

    ((Hugs)), Penny.

    Dylan only has a 504. Because I don't fully understand the whole thing (and I'm an educated person!), I haven't pushed for an IEP. Basically, he's getting some of what I want. Honestly, I wish someone in my city would do a seminar on all of this so I could “get” what is reasonable, what would be helpful, what is possible, etc.

    I am also hesitant to push too much because he in an language immersion program (French). I had the special service team member say: “I can't tell you what to do (which of course meant she was going to) but I'd take him out of French. I didn't like how she said and I didn't like that 3x in the conversation she said his teacher's name wrong. It was like – oh, this is the problem, we don't have to do anything else. This was after I asked if there was any testing that might show other issues besides the ADHD. But reading (grade C) is in English and so French wasn't the issue. Math is in French and he also got a C but Science and Social Studies are both in French and he got a B. And a B in French. He likes speaking French. It expands his world and encourages him to think beyond our community, our state, and our country. Nothing I've seen suggests this his struggles are because part of his day is in French. I can explain math to him and sometimes he gets it and sometimes he doesn't. Also the French class has 14 kids. The “regular” class has 22. Smaller class sizes have always benefited Dylan. He would get less personal attention in a larger class (like his reading class) and he gets overwhelmed the more kids there are (although this is improving). On top of that, he is supposed to get math intervention beginning this year and homework assistance by the French teachers one day a week.

    Sorry – I veered off topic, but this has been bugging me since the meeting I had and I've had no one to talk to about it!

    dee

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  8. Deb D says:

    I can't even get an IEP, three years of trying (we will be going at it again tomorrow).
    My daughter has diagnosis of RAD, ARND & GAD.
    She is smart, very smart, but her sensory processing and comprehension are below average. I have supplied them with resources info, interventions, you name it, but they will not grant an IEP.
    Ok, have a headache just thinking about tomorrow.

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  9. Anonymous says:

    A million thanks for posting this! My son is going through almost identical issues with writing being his nightmare. I was advised to “wait until 3rd grade” for a 504 or IEP. He doesn't qualify for testing for an IEP as of now, so no help with OT or organizational issues… WHY?… Because “he is making good progress and his chances of qualifying will be better next year!”. Yes, he is making progress, but his progress is not up to his potential (also, high)! Incidentally, he did not qualify for the gifted program because he “had trouble focusing on the written portion of the gifted eval!” HA! I was also told (by his doctor) that I should go to a private OT for therapy because the results are better when the OT is specialized in ADHD. I suspect B has dysgraphia, too. I am in the process of figuring that one out.
    I am a teacher as well, and while I know the process of evaluation and qualifying, I do not agree nor understand the thoughts behind it. If it helps, I know that teachers are very frustrated with these types of issues.
    I am so glad I came across this. It seems to be an overwhelmingly big issue for kids with ADHD. Good luck! I'll be looking forward to hearing how it is going!
    Karen H

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  10. Sunny says:

    Penny,

    Just to reiterate some of these comments. My kids have an IEP because they were diagnosed with anxiety–both by the district psychologist and an outside psychologist. From what I understand, they would not be covered for ADHD. (Which does not make a drop of sense.) But it seems most kids with ADHD have some anxiety, so if you want to try that route… Our IEP's focus mostly on behavior, but they have worked in some ADHD stuff, too. And as was said, once you have the IEP, you have to work to make sure it's implemented. Sigh.

    @dmd My ADHD daughter is great a picking up languages. I think the language issue could definitely be distinct from other learning problems.

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  11. Wow! What a response! Thanks to all for sharing your experiences. I'll try to answer all.

    @Laurie, Thanks for showing us our kids can have a happy ending! We so need to be reminded of that when we are bogged down in just getting by some days.

    @Samantha, glad you finally got the help your child needed. Oddly enough, we first applied under Specific Learning Disability, I think, and it was suggested we try under Other Impairment this time. Although I don't have any say in that so I don't know…

    @Adrienne, It sure does feel like a “wait and fail” system doesn't it? Maybe it's our great state of NC?! I was told this year that first grade age is never taken into special ed for things like handwriting, because there isn't yet a large gap between grade level and ability. I am told now there's a HUGE gap between where he is and where he should be and that it's a no-brainer for special ed. However, the school administrator that told me this has nothing to do with this decision and probably little influence although she says she'll try.

    We did go private with the OT after he was completely denied last time. Even with insurance coverage, the copay was $50/week and we were not making enough to pay bills and so I was wracking up credit card debt to pay for OT! It felt so wrong and was just awful. But my kid needed it and I wasn't going to deny him. While OT has been great for sensory needs, it made little difference in handwriting and no difference at all in writing process.

    I have thought of homeschooling from time to time but only for a moment. It would never work for this little boy who needs so desperately to have friends to play with. It wouldn't work for this (working) mom either.

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  12. @Julia L., I have told myself I will take it to court this time if he's denied. We do have a great teacher this year and we have always had a great administration at this school. The teacher and the principal both wanted to just refer him for services and have it be so, but couldn't because of that damn sticky red tape.

    @Lisa Kaye, you are so right that our children shouldn't have to fail to get help. the whole point of special help for special needs is so that children don't have to feel like failures. I am anxious about Luke's reaction to his “D.” He is either not going to notice at all or he's going to get really upset and call himself stupid. I am hoping he can ignore it like I plan to do.

    @dmd, thanks for the hugs. you can vent here anytime! it sounds like you have an entire extra set of circumstances to mucky things up. I think it's great that he can participate in a program like this French program and get the challenge he needs. You keep giving them what-for until they hear you. A mom knows her kid better than anyone else on the planet (at least at younger ages before they hit puberty and hide their true selves completely from their parents!)

    @Deb D, hang in there. we'll all be thinking about you and sending positive thoughts your way tomorrow. Fight for what you know your child needs. Consider private evaluation if you can. Professional reports from outside the school seem to help. Hopefully the teacher is on your side too, it helps.

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  13. @Karen, the system is completely discombobulated, isn't it?! I have found though that the older they get, the more glaring the problem is during evaluation and the more likely they'll get services, at least that is what I'm told now. Luke's scores did not meet the standards for Gifted last year. However, our gifted teacher knows us from Luke's older sister being in her program and she knew of Luke's ADHD. I sent her an email directly at the beginning of the year last year and asked if he could be considered for the program. She went to her boss and went to bat for Luke and had him included on the premise that he was only to go to the weekly pull-out sessions if he completed his classwork. His teacher knew he needed the challenge so she always sent him anyway, even if he wasn't finishing his work. Luke is in the process of being tested again for the gifted program — we do have higher IQ test scores now that meet their criteria but they do more of something… always with the tests.

    @Sunny, it's interesting that your kids have IEPs for anxiety. It's the last thing I'd think they would qualify a child for. Luke is actually taking a medication for anxiety now. I realize we'll have to battle on if he actually gets an IEP to be sure it's implemented. He has a GREAT classroom teacher this year though so I feel like we'll at least be good for this year.

    Thanks for all the comments! Keep them coming… what is your experience trying to get special services in school for a learning disability?

    Reply
  14. mindfulness says:

    I am a Special Educator. I am also the parent of 4 children with ADHD. I have only been through the process as a parent with my oldest child, but I found the process frustrating. I often find it frustrating with my students too.

    I once went through the process with a school psychologist and some others on the team insisting that this child didn't qualify. We looked at learning disabilities, ADHD, Speech/Language, etc, etc. But I KNEW she had a disability. Finally on the 4th evaluation round in one school year, we were able to get an autistic coding for Aspergers. This child NEEDED services, but could easily have fallen through the cracks.

    When my oldest daughter was in 4th grade, she started failing almost everything. Her teachers described her as a wonderful student…did all her work, participated, etc. but she failed her tests. She was so discouraged. She even asked me, “Mommy, am I mentally retarded?” We did the ADHD scales and she was found to be ADHD, but by the time we got to the IEP meeting, it was being “controlled” by medication, so she didn't qualify. Later, she just barely didn't qualify as LD and finally qualified for Speech/Language with a language processing deficit. She received these services in 5th and part of 6th grade and was then dismissed. I had her re-evaluated again in 8th and then 9th grade, but her grades were good enough (only one failing E…in math) that they chose not to evaluate her. She went back on meds and did better, but school is a struggle for her. Accommodations would really help her. I think she is a high achieving learning disabled student. But she needs to fail to be considered.

    These IEP meetings were held at school where I taught as a special educator!

    My 3 younger kids have the worst ADHD I have ever seen. They are incredibly smart, but greatly underachieve. I know if I went through the process, their ADHD would be acknowledged, but they are medicated and not “failing enough” and they are bright. Their education level evaluations would come out high and “classroom performance” is a challenging basis to get an IEP approved for. Usually, the very bright kids who get identified are the kids who are emotionally disturbed. And the gifted kids with learning disabilities are rarely identified.

    It's a very frustrating process.

    Reply
  15. Fiona says:

    Penny,

    I'm just at the very beginning of this process. My boy is in Kindergarten in Australia, and we've only just been told the school would like him assessed for ADHD.

    I was under the impression that ADHD is a disability covered under legislation!

    Australia (and the US?) is a signatory to the UN 'Convention on the Rights of Persons with a Disability.' This was ratified only in 2008.

    The definition of 'disability' is in Article 1: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments”.

    ADHD = classified 'mental' impairment under the DSM. Doesn't that automatically qualify ADHD as a special need?

    Article 24 of the CRPD then notes Educational Provisions that children with a 'disability' are entitled to receive.

    Or am I completely barking up the wrong tree here? I thought that in addition to the CRPD, various Domestic Laws in various states defines a 'disability' to include 'mental or behavioural conditions'.

    The full text of the CRPD is at:
    http://www.un.org/disabilities/convention/conventionfull.shtml

    Reply
  16. Fiona says:

    Penny,

    I'm also studying Primary Teaching at present. I'm very, very interested in the relatively-new “Universal Design for Learning.” This proposes new, more inclusive ways of teaching, designed to include ALL children in mainstream classrooms.

    It's a lot to read, but it's at:
    http://www.cast.org/research/udl/index.html

    Reply
  17. Liz Ditz says:

    Dear Penny & other moms: Hugs to you all. It is a long slog.

    I'm talking to you from your future. My darling dyslexic daughter is now almost 22 & made the Dean's List at a respected college last semester.

    1. USians: Every parent of a child who has a neurological or physical condition that affects the child's school performance should take Wrightslaw's several courses. They are available in person and in a DVD-like format. You have to know your rights and your child's rights under IDEA and ADA. Surprisingly often, the school (teacher, principal, & district) have an incomplete understanding of the law. (If you have this in your resources & I missed it, I apologize.)

    2. This is a very short & terse version of a very long train of thought: “Doing well in school” actually has four (or more) components. (a)Taking in what is being taught or imparted; (b)Understanding what is being taught (c)Mastering what is taught (d) Producing evidence of mastery. What seems to be tripping Luke up here is that he cannot perform (d) to the school's expectations.

    3. Another terse & telegraphic comment: children who struggle in school from neurological attributes (ADHD, dyslexia, dysgraphia, autism) are asked to do MORE than their peers. Specifically, what can teachers and parents do to help the child acquire & master the curriculum while at the same time remediating and/or accommodating the child's challenges? I suspect that the lack of clarity about how much more a child “with issues” has to do is part of a parents' struggles with school.

    4. Arrgh. The madness of “academic kindergarten” and demanding that children begin to learn to write before their brains can do so accounts for a great deal of suffering.

    5. Handwriting is a both cognitive skill (being able to recall the form of a letter) and a physical skill (being able to control your body to produce the form you have in mind). Mastering a physical skill to automaticity requires thousands of accurate, correct repetitions. What do our kids get? Tens of inaccurate, incorrect repetitions before they are expected to produce an accurate, correct physical output, and are penalized if they do not.

    OK, rant off.

    I guess my advice would be: (a)how can you get Luke off being graded on handwriting (which is what accounts for his poor grade in writing)while (b) ensuring that he is getting the handwriting remediation he needs.

    Feel free to email me if you want to discuss this more.

    Reply
  18. Liz Ditz says:

    I had two other points, which blogspot ate.

    They were in brief:

    Handwriting is a physical skill, which takes thousands of correct, accurate repetitions to master — to become automatic, so that he's not using cognitive power to write. My position is that his previous teachers failed to teach him, and now he, not his previous teachers, are being penalized. (“But the other kids learned” is not an acceptable response.)

    Parents need to keep their eye on the ball, which is: how to I make sure that my child has a strong and accurate self-concept of himself as a learner? In other words (for example) Luke has to be able to say, “Sheesh, yeah, handwriting really trips me up. But you know what? I understand what I'm learning”.

    That's really telegraphic. Do feel free to email me if you want to discuss this more (not just Penny, all y'all).

    Reply
  19. Anonymous says:

    Penny,
    Good luck. Been through this too. I would try to not have the school do more testing if you have already got private testing done. We started the process last year and after many meetings, private testing, school informal testing, got an IEP the day before school started this year. I am sorry for the stress and ridiculousness of it all. You are trying to help your son and so many obstacles seem to be in the way. I think you should trust your gut and keep advocating. Write down what your wish list would be for him – what supports you see he really needs. Use Wrightslaw to frame them in an IEP goal type thing. We did this and gave copies to everyone at our meeting. If you do things in their terminology, they will be less reluctant to write it off. It's a lot of work. Get your OT reports, bring scans of his work w. and without support etc. We are fighting this w. my older son who has an IEP and tested in teh 3rd and 6th percentile for ot and they denied b/c he is in middle school and they say there is no point to giving him writing lessons! Choose your battles wisely. Find some good things in the mix so you don't go crazy. Good luck.
    kct

    Reply
  20. Donna R says:

    Why is it so hard to get our kids the help they need? I always gear up for battle when I go to the IEP meetings because you never know what's going to happen.
    One year, we were at a standstill after 2 hours. My son's teacher sat on the same side of the table with me, advocating for him with me Eventually, the therapist typing up the IEP had to type in,
    “Parent disagrees with the recommendation of …” and “At the parent's request, but against the advice of the IEP team” just
    so that we could move forward and get everyone out of there.
    We've had an IEP for years. The teachers try their best to help, but with 26 other students to attend to, they can't always do what my child needs. I understand. But what to do?
    This year I've asked for a 504. And being in a new state, I have asked for an educational evaluation that may pick up a learning disability, which forces them to evaluate him according to state law.
    As I was ready to tell the new doctor who didn't want to give me the next higher medicine dose (my son had been on the same dose for 3 years; he needed more):
    “You want to give my son a crutch when all he needs is a pair of running shoes??!! Please, help me help him help himself!”
    (And if your kid doesn't have ADHD and you're reading this, you DON'T understand, no matter how much you sympathize. But don't take offense–us parents need that sympathy to keep going sometimes. THanks for supporting us, really. THank you!)

    Reply
  21. Linda says:

    you have a wonderful blog. thanks for sharing your life and experience here. keep it up and never give up. you can do it.

    Reply
  22. Anonymous says:

    From what I understand, a child with ADHD can be included on an IEP for “other health reasons”. The whole problem is that the child has to be “significantly struggling in one or more academic areas”. (And that is where the catch it!) I am so frustrated that because my son is bright and compensating (and the meds are somewhat working) that he is excluded from help to get him up to his true potential. I am very fortunate that his teacher is wonderful with him, but it breaks my heart when I see stories posted in the hallway by other kids in his class, and my son has written only one sentence. He has wonderful stories in him, but as I said, struggles with the whole “writing it on paper” process. Figuring out how to get the writing out of him in the classroom setting is next on my agenda… I may have the teacher send home things like that so he can dictate it to me…
    What a trip this is! I wish the best to all of you as you navigate the “system”!
    Karen H

    Reply
  23. Wow, Penny – you have really hit a nerve with this one. It is crazy frustrating that schools don't recognize ADHD as a problem, and the wait-to-fail model is horrible for children. RTI (Response to Intervention), which is the new thing in a lot of school districts, is supposed to help out kids with ADHD, but I don't see it working that way in my son's school.
    And about the homeschooling comment – I know that most people don't have that option, but it illustrates how frustrated I am with the constant arguing with the schools. I am lucky in that my job (b/c I do work) is pretty flexible, so this is an option for us, although not really something that I think will be easy or pleasant, honestly. But here's a good example why I'm thinking about it: this morning I had to literally toss my child, shoes off, teeth unbrushed, and 10 minutes later than we should have left – into the car to go to school because he would not get ready. Part of me thinks it's just because he's a stinker with oppositional behavior, but a larger part of me sees it as avoidance. Why is he being oppositional? Why is he refusing to get in the car? Why would anyone want to go to a place where you fail at everything and you feel like everyone is smarter at you?

    Reply
  24. Lisa Noel says:

    Penny thanks so much for stopping by my blog and leaving a comment. I have searched many times for other blogs that talk about ADHD openly from a moms point of view but found very little.

    As a fellow mom I offer a hug. I have to say I don't fully understand how you feel as my son is still thriving (thanks to meds) at school. But my middle son was denied initially for the speech help I knew he needed but luckily was approved the second time and the process was all very easy.

    Have you attempted to find a parent advocate to work with? I haven't personally but I knew a lady at my boys school who worked for a place that did that. I'm not sure how it worked but it was a free service to parents. And they would be there for the meetings and help you fight from their vast knowledge and experience. If this isn't something you've heard of or checked out, let me know and I'll shoot this lady and email and see if she has suggestions on how to find one in your area.

    Reply
  25. I really hit on a heated subject talking about school evaluations and IEPs! This is the most comments any post has ever received on this {nearly} 2-yr-old blog. I think that comes from the fact that (1) it's a flawed system, and (2) we don't understand the system and how to best help our children. I am considering purchasing some videos on advocacy from http://wrightslaw.com — I looked at their seminars but there aren't any close enough to me to make it financially feasible.

    Despite getting lost in the system, Luke (and I) are very fortunate to have a very supportive and understanding teacher and administration. They are doing everything they can to help him.

    Reply
  26. leonsmom says:

    Ugh Penny, My stomach is tied up in knots just reading your post. I know that feeling! It comes back everytime Leon gets re-evaluated. I hate the fear that comes with it. I don't have any answers either. Leon has been consistently denied an IEP but has a very very good IAP in place under the 504 plan. in many ways it is better than any IEP I could have been granted. Under normal circumstances it would NOT be acceptable to me to just have an IAP antd not an IEP. But our circumstances are not normal. We got lucky, very lucky, in more ways than I can count. We were lucky that we didn't lose our son completely due to the school literally losing him. His walking off school property in the middle of the day and walking all the way home by himself at 6 years old undetected, was a blessing in disguise. The nightmare of it all still haunts my dreams at night, knowing how many things could have gone so very wrong, yet the blessing is that the school has obliged our every request and I believe that it is because they are worried about a lawsuit against them for negligence. I still am waiting for the bottom to drop out from underneath us. I don't know for how long I can hope to rely on this misfortune with a happy ending.
    I know that when it does drop out from under us – I WILL be getting a lawyer to fight it

    Reply
  27. leonsmom says:

    BTW I did recently shared a letter that I had written to the Committee of Special Education on my blog as an example to help others who were looking for ideas on how to word their requests. I really don't know if it is the right ways to go about it, or even if there is a right way to do it. But as lost as I was when I was first on this journey of discovery for Leon, I know that I would have wanted someone to share their ideas for me to pick from. So feel free to take a look if it helps
    http://leonsmom.wordpress.com/2010/10/21/ive-been-asked-to-share/

    Reply
  28. dmd says:

    I read somewhere (wish I could remember where) in a piece more generally about education, not necessarily special education. But the author's premise was that for K-3 or 4 if I remember correctly, EVERY child should have an IEP. Now, we all know that would never happen, but isn't that the truth? So much is just getting started in those early grades. Even for kids w/o any diagnosable problems, having their education tailored to their skills and level of development would make them so much more … complete in later grades. Unfortunately, education is the first thing to get cut so there is no way enough money would ever be allocated for something like this. But I can fantasize what it would be like….

    dee

    Reply
  29. Sunny says:

    Wow. I am realizing how lucky we are to have IEPs in place and helpful teachers and administrators. We are at a charter Montessori. Psychologists told us that a Montessori school might not be the best for our kids because it is not highly structured. But I stayed because the teachers, principal, and special ed. teachers have been so helpful and thoughtful. They have given my kids individual attention. They have listened to our family and gotten to know us. They are the most important factor to me–not whether it's Montessori or charter or traditional, etc. And maybe our district is not as busy or overcrowded?

    I wanted to also mention that at school, my kids get individual counseling once a week and twin counseling every once in a while because some of their issues stem from being twins. They also go to “Friends” group once a week. This focusses mostly on behavior and understanding social interaction. Does anyone else have these kind of programs in their school?

    Reply
  30. Shell says:

    I've been on both sides of this- I was a teacher. Including one year when over 50 of my middle schoolers had IEPs, so I am definitely familiar with the process.

    And now I'm a mom. And my middle son NEEDS help. But, he doesn't qualify for any. Everyone agrees he needs help, but NO ONE can give it to him. So incredibly frustrating.

    Hang in there! You sound like you are an amazing advocate for your son.

    Reply
  31. dmd says:

    Saw this today and had to share. Not ADHD, but about one parent's struggles for her son. It is HEARTBREAKING.

    http://blogs.edweek.org/teachers/teacher_in_a_strange_land/2010/10/this_boys_life.html

    I hope it is accessible. If not, I'll see if I can get permission to share. –dee

    Reply
  32. Anonymous says:

    Hi Penny,
    I really enjoy your blogs. Last year a PT suggested a Hanidwriter for my son who was having a difficult time with grasping the pencil as well as letter formation. I'm not sure if you ever tried it but it did really help. The below is the website.
    http://www.handithings.com/handiwriter.htm
    Thanks for sharing your experiences.

    Reply
  33. Anonymous says:

    I wonder why I can't see full text in your RSS feed, do you allow full articles?
    So do you like this movie Inception? I think it's a masterpiece, aside from the cast… they didn't do a very good job, though they tried.
    I'm not happy about my life, what can I do to be happy?
    It's not a good idea to make me upset, and when my comments get removed I get really sad.

    Gravity doesn't exist. Earth sucks.

    Reply

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The "ADHD Mommas" are not medical or mental health professionals, nor an ADHD coach. Any opinions shared here are just that, opinions. I, and the other "ADHD Mommas," are sharing our experiences with our own ADHD children. Please do not re-post or publish any content or photos without a link back to {a mom's view of ADHD}. Have the courtesy to give credit where credit is due. Copyright protected. All rights reserved.

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