ADHD & Probable Dyslexia, Stupid SPED Team! - Mothering Forums

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Old 10-22-2013, 03:16 PM - Thread Starter
 
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So how many of us mamas have to deal with the "highly trained" special ed team knowing less than WE do about how to teach our children? And why are they so resistant to taking suggestions, as if it's not their job to help educate these children with different learning abilities?! UGH!!

 

My DS1 is in 2nd grade, has been on an IEP since last year for ADHD and speech/OT, and at my request, his IEP is being re-evaluated next week. His regular teacher, SPED teacher and the school social worker all but flat-out told me to put him on meds.  I told them our family doesn't react well to pharmaceuticals, and I was not about to try that first. Instead, I am starting him on supplements to remedy his symptoms and bring him back into balance naturally.

 (see: http://articles.mercola.com/sites/articles/archive/2001/01/07/lendon-smith.aspx )

 

I took DS to our pediatrician, and he told me "I certainly don't want MY kid on that medication - so I completely respect your position if you don't want YOUR kid on meds. Even though he has many ADHD symptoms, I don't think he really needs them. It will take a while to notice any improvement with the supplements, but it certainly can't hurt to try."

 

So now, I need to figure out a way to get the SPED team to change the ineffective techniques they are using, after telling them I won't drug him into a zombie-like state so that he HAS to pay attention to their ineffective techniques. Whatever they are doing, is not working with his reading disability...whether or not it's truly dyslexia is irrelevant at this point. I have told them he is incapable of sounding things out phonetically, can't perceive words correctly when they're written in black & white, so color works best, preferably writing words out with a different color for each syllable. He does great with a visual, sight-word approach, and if you "give" him the word before he can imprint it wrong, he'll remember it.

 

Instead, they give him black & white cookie-cutter worksheets, have him draw a "scoop" line under each word and try to sound it out if he doesn't know the word...he tells me it just makes him focus on the "wave" line and the words go "blurry", and sounding things out phonetically confuses him. Then he gets distracted because he can't focus on something he can't perceive correctly or understand, and he gets in trouble for not focusing.  I don't understand why they can't figure out that their methods are NOT working for him!!

 

Anyone have some advice on what to tell them? shrug.gif  Does this sound like dyslexia, or if not, what else could it be?


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Old 10-22-2013, 03:52 PM
 
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Hi my3beasties, and welcome here to this forum.  I completely respect your desire to not use meds if you can find other methods to help.  I am so glad you found Dr. Mercola's website.  I learn so much there that has helped my family.

 

O.K....about the team....take a deep breath.  You may have to call a team meeting and go over the home approaches that you use that are most effective.  Show them, tell them why they work for him, and then, you just may have to have an amendment written into his IEP that requires that these approaches be used by his teachers.  Often educators, well meaning, but stretched for time, use what has worked with "many" children in the past and may not see what you do.  If necessary, you may need an outside evaluator to 1.  determine if he does have a "reading" and decoding issue like dyslexia or if his issues are  2.  purely attentional in nature. 

 

Curious to me is that he describes the line and words as going "blurry".  Here's a tip, one that I wish I had known about.  I discovered "Irlen Syndrome" on my on-line google searches, trying to discover why my son had headaches and eye strain despite getting corrective lenses.  So, one, if you already know your son's eyes are fine, consider visual processing problems being part of the issue.  Research www.irlen.com.  My son, after getting Irlen lenses, began to describe that he had been seeing the words in wavy lines.  Before this, he hadn't been aware that they should look any different.  Also consider that he may have other vision problems that may benefit from the screening of a developmental optometrist. 

 

It does take a while to see improvements with diet and supplements, but, six months will pass, and big changes can happen.  My son benefits enormously from a gf/cf diet which he's been on for almost three years which has cleared many of his issues with attention and anxiety, without meds.  We noticed a big change after six months passed.

 

Best wishes.

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Old 10-22-2013, 03:55 PM
 
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Oh, and after his Irlen lenses he began to read prolifically after finding reading very very HARD to learn due to his visual distortions.  He is now an AVID reader. 

 

Hope that this helps.

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Old 10-23-2013, 08:06 AM
 
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It could be dyslexia.  Has your ds had a neuropsych exam by a psychologist outside of the school?  It would be helpful in identifying his strengths and weaknesses and assessing his reading.  The psychologist can give recommendations for your team for treating both dyslexia and adhd, if your ds has them.  The team does not have to follow those recommendations, though.  

In regards to medication, you do not have to medicate.  The teachers can not prescribe medication, so therefore they can not require it.  

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Old 10-24-2013, 10:44 AM - Thread Starter
 
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Thanks for the welcome and suggestions! LivingLife, I will definitely check out the Irlen lenses, that sounds like a great idea! It's also great to know your DS improved over time with a natural approach...gives me hope that we can do it too!

And Melissa17s, I am trying to get him evaluated by a psychologist at Children's Hospital, but can't seem to get a return call, and keep getting jerked around by other places as well. Everyone says it SEEMS like he could have dyslexia, but no one wants to make an "official" diagnosis, they just refer me somewhere else. I've been getting this runaround treatment since he was in Kindergarten.

Now his teacher is expressing concern that by the time we get it figured out, he'll have missed half of 2nd grade...and I said, "So in the meantime, why don't you just treat him like he has it and use the techniques you'd use after the diagnosis?!"

SPED Team might as well have said: "Oh, no, we can't do THAT! It would not only make sense, but cause us more work...we would be required to THINK about how to do something differently! Just drug him into submission for us." UGH!! (OK, I'm done ranting...) Sheepish.gif

I am going to try calling Children's AGAIN today, and see what I can get in terms of help from their Learning Disability Clinic. His IEP Review is scheduled for next Tuesday, so hopefully I can get some info to share with his teachers, in addition to the techniques I've been using at home. I'm tossing around the idea of having a tutor come with me, but don't want to pay him $100 to do so. (We are fortunate enough that Jeffrey Freed, author of "Right Brained Children In a Left Brained World", lives in our town...had him working with DS in Kindy and he came to the first IEP meeting, but he's sooo expensive!) I can certainly relate some of his methods, and see if they can incorporate that into what they're doing at school.

Sigh. It's just so frustrating, and hard to get anyone else to understand. Thanks for listening and understanding! shy.gif

P.S. - Oh yes, and the icing on the cake of all the stupid little things that get under my skin...I sent him to school with a "worry stone" to see if that would help his need to fidget with something in class, and his PE teacher took it away from him! I told him to ask the PE teacher for it back, and tell him it's his mom's stone...the guy just said "No, you shouldn't have brought it to PE." Can you visualize me jumping up and down, pulling my hair and writhing in my little "angry dance"?

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Old 10-30-2013, 11:44 PM
 
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Is "Children's Hospital" a public academic medical institution?  I have both worked for and been a patient at one.  This is ugly to say, but my experience is that while the smartest people may be at those institutions, they may have the worst support staff because the way money moves into and within them is so different from the private sector.  If you can't reach them by phone, can you go there?  I've done that.  It's harder to ignore someone standing in front of you than a phone message.

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Old 10-31-2013, 06:36 AM
 
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To get into Children's Hospital for a Neuropsych evaluation, I'd talk to your son's pediatrician.  The pediatrician can put in a referral and the pediatrician's office can contact Children's for you.


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Old 11-01-2013, 11:13 AM - Thread Starter
 
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Children's Hospital Denver - as far as I know - isn't a public academic institution, although they do participate in research. (I took DS to a University medical practice when we lived in Nevada, and they were awful! The allergist there was more interested in showing off to his intern, than actually listening to my concerns. DS actually broke out in hives in his office while munching on corn chips, and the guy didn't even notice, let alone suggest a corn allergy.)  OTOH, Children's here has been great - all my kids have been there at some point. I finally did get a response from their Learning Disability Clinic - apparently the lady who does their scheduling had been out sick with laryngitis and couldn't return my call. So after I got no response by phone, I sent an online request for an appointment, and she emailed me the next morning.  I'm sending her the intake packet, and hopefully we can get things figured out soon!

 

Met with the SPED team on Tuesday, and when I gave them his history of birth trauma and emotional trauma from his bio father, it tugged their heartstrings, and they had a much better perspective on what's going on and how to help him. They actually had some great suggestions, like the OT recommended equine therapy for gross motor & core strengthening, and chiropractic to potentially help with his attention issues. His teacher is requesting an iPad through the district that he can use in class for writing assignments, and he can get books to read on it, etc. The iPad will be "his" as long as he's in the district, so he could potentially have it through middle school, and another one in high school. Score!!  He will also be able to have accommodations for standardized testing, and instead of a 2 hr written test, he'll be able to answer verbally! :joy

 

FINALLY, they realize we need an integrated approach that addresses all areas of difficulty for him, not just "drug him into being calm and give him a double dose of reading"! Things are looking up. :thumb


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Old 11-01-2013, 11:59 AM
 
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If Children's doesn't work out, I have used this center to diagnose dyslexia in the Denver area previously when every one else was turning us down. http://www.ndckids.com DD1 was incredibly young and other places were  hesitant to even eval her because of her age but she clearly had signifiant learning disabilities. I'm in contact with this clinic once again after migrating through all the various depts at Children's regarding my DS1. We are going to see a neuropsych here for learning purposes. I had one conversation with the doc this morning and she was already sprouting off exactly what I wanted to hear and not just talking meds like what I normally get.  


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Old 11-02-2013, 01:05 PM - Thread Starter
 
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Thanks so much, Peony! Both Children's and NDC are kind of a hike for us, but we're in Evergreen...nothing is close! LOL  I will check them out as well, it's great to have more resources. All the talk about meds gets on my last nerve, too. My kid needs help, not amphetamines! Good luck to you with your DS. :)


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Old 11-02-2013, 07:43 PM
 
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I hear you! We come up from across the state to get specialized care. So annoying at times, I'm tired of driving and living in hotels but one of these days, it will be easier. :twothumbs


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Old 11-02-2013, 11:16 PM
 
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It looks like you're already on the way to getting him evaluated, so I'm just going to wish you good luck.  The waiting list for neuropsych evals when we wanted one was crazy, like 9+ months at all the places our insurance was contracted with.  We ended up using a group at the local University who didn't bill to insurance, and then fighting with insurance to cover it as an out-of-network provider on the basis that since the only provider they covered has 9 month wait lists, they aren't able to provide adequate resources in network (9 months = an entire school year which is unreasonable!).  It worked out, but we were lucky it did.  


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Old 12-21-2013, 12:41 PM - Thread Starter
 
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Update to this thread! So much for "things are looking up", and back to my original title: Stupid SPED teacher!! We finally got the eval at Children's, and the specialist was wonderful. She diagnosed dyslexia, dysgraphia, and ADHD.  We already know he has anxiety disorder on top of that.

 

So he got in trouble for being impulsive at school (duh - he can't really help it!), and I wound up in a meeting with the principal.  I told them about his test results from Children's, and that he gets frustrated when he feels unsuccessful, as anyone would, and lashes out when he's not in a confined setting.  I told them AGAIN, from what I see at home (and who knows him better than me?!), he can't focus on something he can't perceive correctly...but if it's presented in a way that's engaging and colorful, he can do it. In other words, the dyslexia is causing most of the ADHD symptoms. They told me they see it the opposite way, that if he could just focus they could teach him.  His teacher, the special ed teacher, and the principal ALL told me if we don't want to do meds, we might consider a change of school environments. As much as to say, either drug him so he can pay attention to our ineffective teaching methods, or leave the school. duh.gif

 

I'm so p!ssed at them, I don't know where to start!  I freakin' can't stand those people!!  What the heck is an IEP for if it's not "individualized", and why the heck don't they want to do their jobs?!  My mom thinks I should call an attorney, the media, and possibly a mob hit man if those routes fail. (just kidding on that last one! :wink) I'm ready to pull him out for the rest of the school year, and just homeschool him!  It's becoming obvious I will have to fight HARD to get what he needs from these people, and he doesn't need to be subjected to their passive-aggressive backlash. DS2 is starting K there next year, DD is starting preschool, and with baby #4 due in August, I REALLY don't want to be driving all over hell's half acre to take them all to different schools!  Much as I LOVED Montessori, and they're 2 minutes from our house, I can't afford the $11,000 per year tuition for elementary. But I'm desperate enough to see if they'll do financial aid, and maybe let me work in exchange for partial tuition if I can bring the baby!

 

Any ideas where to go from here?! I'm so lost. :dizzy


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Old 12-22-2013, 08:26 AM
 
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I think you could indicate to the staff your interest in hiring a lawyer, if they keep trying to play doctor they may back down on medication.  However, sometimes it is easier to get them to listen, if you are not confrontational, which the lawyer comment might be perceived.   I would try to address this with the teacher and special ed teacher as much as possible because they are with you kid- not the principal.  A form of treatment that they could utilize in this situation would be behavior therapy.  This is not a curriculum strategy for the dyslexia, but one for the impulsiveness of adhd.  Also, knowing that your ds now has dyslexia, I think instead of telling the teachers this is the way you have to approach it, ask them what methods they use for kids with this disability and talk over the recommendations from the specialist you just had evaluate your ds.  There are many strategies to handling disabilities, and the school is not required to use parent's preferred approach for the IEP.   However, you may be able to call another IEP meeting to adjust the IEP in light of this new information, to help them set a better course and this would be a way to give some curriculum input.   

 

My ds does have both dyslexia/dysgraphia and adhd.  We found our school to be responsive to our requests, but limited by budgets and district stuff. They tried very hard to implement aspects of various programs related to dyslexia, but could not afford to train staff in or utilize programs like Orton-Gillingham or Davis.  Often, methods were left to the classroom teacher, so having a repoire with this person is important.  Sometimes, it helps to supplement with private tutoring outside the home, if you want a particular program.  

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Old 12-22-2013, 09:55 AM
 
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To add to what Melissa17 said, I've also known parents to offer to pay to have an expert come in and train the teacher and special ed teacher on preferred teaching methods.  It is not only good for your child but is professional and career development enhancing for them.  A win win approach so to speak.

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Old 12-23-2013, 02:20 AM
 
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there are some excellent tutors for dyslexia out there. While my son isn't dyslexic, we did work briefly with one for writing (my son appeared to be dysgraphic, but just needed some extra support there). Our tutor was amazing, and that little extra time (an hour a week) made a huge difference. She was really amazing, and we received other recommendations from families struggling with dyslexia. Good luck!


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Old 12-23-2013, 08:06 AM - Thread Starter
 
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Melissa, I agree that mentioning a lawyer would seem confrontational and put them on the defensive - totally not my style!! That was my mom's suggestion, she has no qualms being confrontational, and has dealt with this same special ed teacher when my younger siblings were at this school. This special ed teacher was the one who suggested my sister start meds, which put her on a downward spiral of behavioral problems in school and mental health problems that she's still dealing with at age 25. A few years later, the same special ed teacher was also responsible for my brother being so stressed at school that he became physically ill and wound up having gallbladder surgery at the age of 10!  So I think my mom has a bit of a grudge, to say the least.

 

As for talking to them about different methods, we had another IEP meeting about 6 weeks ago, and they were very vague when I asked about their methods, and wouldn't give me any concrete examples, except for saying they could try to get him an iPad to use in class. They made it seem like they're doing SO much to help him, and they're SO invested in helping him be successful.  But so far, they have not "walked the talk" and are not doing anything differently, and DS is feeling a lot of pressure every day at school.

 

LivingLife & ForestMushroom, I had a great tutor working with him previously, and I think it might be time to call him up again. It really helped DS with his confidence and self-esteem.

 

Our biggest issue right now is that the special ed teacher is such a tool, she is stressing him out, and doesn't want to utilize other methods - just wants me to drug him into submission. I just don't want to see a repeat of my sister & brother.  Sigh. :(


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Old 12-27-2013, 07:54 AM
 
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Melissa, I agree that mentioning a lawyer would seem confrontational and put them on the defensive - totally not my style!! That was my mom's suggestion, she has no qualms being confrontational, and has dealt with this same special ed teacher when my younger siblings were at this school. This special ed teacher was the one who suggested my sister start meds, which put her on a downward spiral of behavioral problems in school and mental health problems that she's still dealing with at age 25. A few years later, the same special ed teacher was also responsible for my brother being so stressed at school that he became physically ill and wound up having gallbladder surgery at the age of 10!  So I think my mom has a bit of a grudge, to say the least.

 

As for talking to them about different methods, we had another IEP meeting about 6 weeks ago, and they were very vague when I asked about their methods, and wouldn't give me any concrete examples, except for saying they could try to get him an iPad to use in class. They made it seem like they're doing SO much to help him, and they're SO invested in helping him be successful.  But so far, they have not "walked the talk" and are not doing anything differently, and DS is feeling a lot of pressure every day at school.

 

I think you have put yourself in difficult position because the grudge against this teacher seems to affect everyone.  (I honestly can not understand how a teacher could do something that leads to gallbladder surgery, though.)   I think you need to talk to your state's agency that provides advocates (there seems be more than one for CO) for parents.  The advocates can go through the IEP process and explain things, such as,  "Can I call a meeting if my kid's IEP goals are not being met by the school or something has changed since the last meeting?"  They will teach you when you can throw around the phrase, "I would like to see the prior written notice of [that or insert subject]" and this is an important legal phrase that schools understand.  Often, the advocates will go to the IEP meetings with you, but if they can not they will work with/coach you through advocating for your child.     

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Old 12-27-2013, 08:58 AM - Thread Starter
 
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I think you have put yourself in difficult position because the grudge against this teacher seems to affect everyone.  (I honestly can not understand how a teacher could do something that leads to gallbladder surgery, though.)   I think you need to talk to your state's agency that provides advocates (there seems be more than one for CO) for parents.  The advocates can go through the IEP process and explain things, such as,  "Can I call a meeting if my kid's IEP goals are not being met by the school or something has changed since the last meeting?"  They will teach you when you can throw around the phrase, "I would like to see the prior written notice of [that or insert subject]" and this is an important legal phrase that schools understand.  Often, the advocates will go to the IEP meetings with you, but if they can not they will work with/coach you through advocating for your child.     


The grudge against this teacher is my mom's - I just know the details, but try not to let that affect my dealings with her, and I will never tell this teacher my relationship to them so that it doesn't taint her treatment of DS. As for my brother, the special ed teacher was responsible for his class placement with the ONE teacher my mother specifically requested he stay far away from - this guy habitually intimidated and belittled my brother in front of the class, took away recess saying things like "Well, if you're too dumb to do this right, you'll have to stay in to finish" or "Look at this class - does anyone want to do this like Nathan, or do you want to try?" Nightmare teacher! My brother's stress was so bad, he had constant stomach pains and would be curled up in a corner not wanting to go to school. It took my mom 4 months to get his classroom changed, by then his stress had manifested physically into a gallbladder infection. She managed to get the principal to convince the teacher to "retire" early after that year.  Anyway my mom blames the special ed teacher for placing him in this guy's class...but as I said, I try not to let that affect how I deal with her now. I just know her history of being nasty to kids (many more than just my siblings), so I don't expect much. Even our tutor has heard horror stories about her from other families.

 

I did speak with the tutor, Jeff Freed, who has 25 years experience working with kids like DS, and he wants to come with me to the next meeting. Hooray!  So as you said, an advocate would be very helpful. I will check into some of the legalities involved too - thank you for the links!  I told Jeff they said I'd have to consider changing school environments if I don't medicate him, and he said "What?! They can't do that! You could get a lawyer and make the district pay for him to go elsewhere." I consider that a last resort!  We'll try the conservative approach first, and I'll have Jeff come with me to the next IEP review as an advocate. I'll see what we can accomplish this way.  Thanks again for the links & helpful advice. :)


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Old 12-27-2013, 11:27 AM
 
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I think it's a great idea to take someone with you to advocate: that's one of the things I was going to suggest. I took my daughter's therapist to our last IEP meeting and it was great having someone else on "my side" of the table. It makes the experience much less like a high-pressure panel interview. I've considered hiring a professional advocate (but haven't yet found the right one to meet our needs) simply because I'm not good at pressing my points.

 

Your tutor is right in that the school can't tell you "medicate or leave", but they can, I think, force your DS to move to another school if the he's manifesting behavior that they can't handle in the current school. The issue here is whether the behavior is actually that bad, and who gets to decide, and it sounds like you have such a long history of distrust with the special ed teacher that her opinion will be disregarded in any case. I would definitely call the state advocacy offices and consider whether it would be worthwhile finding a neutral professional to come in an observe so you have trusted information to go on.

 

All that said, I also think it would be worthwhile to get in touch with a medical specialist (NOT just your family doctor--find someone who specialises in ADHD and who _really_ can tell an ADHD kid from a non-ADHD kid) and get their opinion on the situation and treatment options. Your family has a long history with this school and I can see where you are likely inclined to never do ANYTHING they ask, but medication for ADHD has a reasonably long history at this point and is well-studied--and there's a LOT of research showing that proper medication managed by a specialist brings a great deal of benefit to the child, socially, emotionally, and health-wise, especially if they're also getting appropriate therapy and accommodations in school.

 

I realize your sister had a bad experience, but please consider she is just 1 person and that there is a great deal more knowledge, science, and many more choices of medication now than 20 years ago. I'm saying this with personal experience: my DD's father had Ritalin as a kid and never liked it (though as an adult he takes Adderall and it's a huge benefit to him), and consequently refused to medicate our DD (who is approximately the most ADHD child in the county) for 2 years. I honestly feel this was hugely detrimental to her; she has been down a bad path of frustration, anxiety, and perpetual behavioral failure.  Medications can be discontinued if they don't actually help, but the emotional toll of being unable to control your behavior, being in trouble with adults and peers can be so huge.


Erin, mom to DD (1/06) and DS (10/09)
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Old 12-28-2013, 09:34 AM - Thread Starter
 
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Aufilia, I am with you - I am so easygoing, I'm not good at pressing my points either. I hate going in there solo and feeling like they're all pressuring me to do things their way! I don't want to be the wicked witch of the west in there, but it would be nice to have someone on my side to help make sure things get addressed properly.

 

As for my son's unmedicated behavior, his biggest problem in school is not the ADHD, it's the dyslexia! I honestly feel like if they would use different techniques so that he can correctly perceive the words on paper, he'd be able to focus much better. I see that his lack of attention is directly proportionate to his inability to read. He can hyperfocus on things he finds interesting and engaging, such as a Stephen Hawking show about theoretical physics, or even when the tutor works with him simply using brightly colored markers, with a different color for each syllable. The school doesn't see those abilities of his, because no matter how many times I tell them it doesn't work, they present things in black & white text, which to him looks like a blur with the occasional sight word sprinkled in.

 

The thing I really take issue with is, it seems like the school is unwittingly goading him into bad behavior with their refusal to do things that work for him. It's called an INDIVIDUAL Education Plan for a reason - if the same tactics worked with all kids, there would be no need for special education. He gets so frustrated and stressed out, but is forced to maintain in class, then when he's out at recess he lets loose and gets in trouble for being impulsive! I don't know if they just don't get it, or if it's intentional on some level.

 

I've talked to his pediatrician, tutor, the specialist at Children's, and even the doctors at Sewell Child Development center - while they all acknowledged that he probably has ADHD, none of them think he needs to be medicated. It's not a matter of me resisting what the school wants, because while I see their side of the issue (just trying to do their jobs & being hindered because it doesn't work for him), I also - more importantly - know my son.  My intuition tells me that if I put DS on meds, it will backfire - no matter how focused he is, he will still be unable to perceive words correctly, and will become even more frustrated and anxious, then depressed. And I also worry about adverse reactions, because our whole family doesn't react well to drugs...heart palpitations, psychotic episodes, depression...you name it.  Then there's the message it would send him that "something is wrong with you and you need drugs to fix it" - which will ultimately lead to self-medication later in life.

 

Meds can be a good thing for some kids - I was a childcare teacher for a time, and one of our boys was severely ADHD; the meds helped him immensely. But for my son, ADHD isn't the only problem...it's just exacerbated by his dyslexia, and he's NOT getting proper accommodations and interventions at school. I guess the best thing to do now is to take my advocate with me and talk to the school, then see where we go from there.


Mostly SAH mama with DS1, 8yo DS2, 5yo DD1, 3yoDD2, born Aug 2014 & my awesome DH
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