View Full Version : New here...multiple dx's? How do you know....


jskisses
01-14-10, 08:05 PM
Hi, I'm brand new here and sought out this forum because I need to talk to other parents of kids with ADHD.

A little background:

J is 9.5 yo and in 4th grade. He was suspected to have ADHD even before starting school and was officially dx'd in kindergarten. Started meds towards the end of that school year and of course went through the trial and error process there. He's been medicated ever since, and about a year later (age 6) they also dx'd him with an anxiety disorder. He's also medicated for that and it's been an improvement. He's also been in therapy every other week since right after the initial diagnosis.

Fast forward to a couple of months ago when problems at school started popping up, with his grades and with his behavior. He's always been a bright kid and his grades started slipping, he started saying he hated school and was bored there. This prompted some searching for answers and that led to having a full psychological evaluation.

That's the background. The psych report revealed that he has a high IQ (superior in some categories), the ADHD was confirmed as well as the anxiety, problems with executive function were noted and we were also referred to an OT because there are tons of things that point to sensory disorders with him as well. So I've hit the jackpot with a kid who has a multitude of issues, all that include problems with behavior, initiative in school, etc.

How do you deal with all of it?? We won't have the official diagnosis until the sensory eval in March (soonest they could get him in) but he's textbook for at least two categories of SPD. He gets completely overloaded/overstimulated and has poor impulse control when he's upset/overwhelmed. This of course leads to problems at school. He's pretty good for me, but he's not overwhelmed at home either, yk?

His school is NOT working with me at all, they've fought me tooth and nail on doing testing, writing an IEP or 504 (he had a 504 in 1st grade but was 'better' in 2nd so they dropped it) and I can't even get regular communication from his teachers. Having this bright kid who is starting to 'give up' is killing me! I've even strongly considered pulling him from school and homeschooling at least until we get a handle on the sensory stuff and get some therapy underway. I'm told that once we dx and start treating for the sensory issues, we should see a decline in the symptoms of the ADHD and anxiety (my bright spot in all of this!!) and hopefully with that, he'll be able to focus more and work to his potential.

SO if you survived my novel, thank you! I know it's long but I felt I needed to give enough info to garner good advice.

Anyone have a child with all of these dx's? How do you handle it all?

MuscleMama
01-14-10, 11:16 PM
My son has many of the same issues. He is 8 and in the 3rd grade. His neuropsych eval was very helpful and he started Concerta over the summer which has helped a lot.

I recently read a book about "twice exceptional" kids - both gifted and learning disabled (adhd). Something you might want to read up on. My son is smart, but also hates school and recently qualified for OT for his terrible handwriting. He goes so fast and his work is so sloppy you would never think he was gifted at all.

His school has been very good, though. Why do you think they are being so unhelpful? Are they like that as a rule or do you think you are having a specific problem? How is his teacher this year?

daveddd
01-14-10, 11:45 PM
there are some studies showing a very good response to ssris for conditions that have SID as a symptom

also says the SID can cause distraction and anxiety

a couple other ones saying anti convulsants show a ton of improvement in certain types of SID

my sister has issues with this leading to migraines (light) and lamactil has been extremely helpful

jskisses
01-15-10, 09:41 AM
My son has many of the same issues. He is 8 and in the 3rd grade. His neuropsych eval was very helpful and he started Concerta over the summer which has helped a lot.

I recently read a book about "twice exceptional" kids - both gifted and learning disabled (adhd). Something you might want to read up on. My son is smart, but also hates school and recently qualified for OT for his terrible handwriting. He goes so fast and his work is so sloppy you would never think he was gifted at all.

His school has been very good, though. Why do you think they are being so unhelpful? Are they like that as a rule or do you think you are having a specific problem? How is his teacher this year?

Thank you so much for sharing this! I had never heard the term 'Twice Exceptional' before yesterday and OMG it makes SO MUCH SENSE! I stayed up way too late reading about it and about how schools tend to overlook this because the child usually performs at grade level but with the acting out, being bored, etc. One of the county school system's in my area had a huge section on this with examples of how a strength and a weakness together can result in mediocre or poor work, attitude, etc and had lists of things to do to help (to put in the IEP).

The school has always given me crap over his issues for the very reason that schools overlook the 2e problems. Up until this year he was A's/B's, he performs in the top percentile on the state assessment tests and is known as a bright kid and they think he's just socially immature and that b/c he has ADHD he has poor impulse control. The problem is, that the big issues (like impulse control) are mostly evident in only the school setting, so it's hard for me to tell them how to remedy it, yk? With NO communication from his teachers, I have no idea if he had any issues in a day and if he did, what led up to it, etc. Fortunately I have a friend who works at the school and there is a para in J's room for another child and she'll pass on any observations she makes on J because she knows how frustrated I am with the lack of comm. My friend has been invaluable there b/c she sees him at lunch and she can read him and know when he might need her to come help him calm down (the cafeteria is one of the places that overwhelms him b/c of the suspected sensory issues).
So yeah, because he's usually 'normal' they don't think he needs help despite my multiple requests for testing, etc (the testing I had done recently was independent and of course they say 'we don't have to accept it', etc. The VP at our school is in charge of spec. ed and he goes to every length to keep us from getting him identified. In fact, when I met with him to discuss our report this week, he said that my options are to put him in a special ed/special needs room, remove him from this school and put him in a program for behavior risk kids, or come up with my own solutions and see what they can meet me on (with an IEP if he qualifies). Yeah, so they're about as lacking in helpfullness as I am with patience for their BS anymore. The VP showed his true ignorance in regards to ADHD in our 'meeting' the other day and I'm appalled that HE is the head of special ed programs for our school!!

I've read enough over the last two days to know they are dancing on the edges of the law (and have gone over those edges in refusing to evaluate him) and I'm ready to nail them on it. I'm getting an advocate and whatever else it takes to get them to realize I'm not just going to go away. I know that makes me look like one of 'those' parents, but I'm not going to watch my bright child continue to fade b/c they can't be bothered to follow the law.

To show you the kind of person I'm dealing with (with the VP), after our meeting got a little heated and it was evident we weren't going to get anywhere, I tried to appeal to him as a parent so I asked if he had any kids. He got defensive and told me that I was 'personally attacking' him and shepherded me out of his office!! How is wanting to appeal to someone as a parent a personal attack!?!?

Thanks again...knowing that Twice Exceptional does in fact exist and that there ARE reasonable accomodations that can be made is HUGE.

Vickie
01-15-10, 01:40 PM
My youngest is also 2e, and with increasing stress and frustration due to undiagnosed ADHD and not-so-good teachers at school, developed anxiety and ODD to the point of violent rages. During the diagnostic period, we had an educational psychologist (who was on the school's list) do an evaluation and make written recommendations. At the time, we did not know that the school was really good with special needs kids, as we had only dealt with the uncaring difficult teacher.

Through this diagnostic time, collect all the diagnostic documents and ask the docs for written recommendations to help with handling the school. These professional opinions will carry weight with the school, and if not the school, with the district if you have to go higher.

During evaluation, did the doc send forms to the teachers to evaluate behaviors? This can give them a heads-up that serious outside evaluation is in the works which can sometimes grease the wheels for IEP time. When you request the IEP meeting in writing and send in the diagnostic information and recommendations from the professionals, they will have to pay attention and either make accomodations and do their own evaluations, etc. Also any IQ testing done by the docs will need to be accepted by the school and cannot be repeated by the school for a year because this type of test is not valid when repeated too soon.

Look at the wrights law site for info on your son's education rights. There is also info on getting an advocate if you need one:
http://www.wrightslaw.com/articles.htm

Ms. Mango
01-15-10, 02:23 PM
I was also going to recommend the wrightslaw site--it's a great resource.

Your school's VP needs a refresher course in IDEA. What he is doing is in violation of your state's own procedural rights guide:

http://www.msde.state.md.us/SpecialEducation/PSG_multi_lang_02/English.pdf

You do have the right to have him tested--have you asked for this in writing (certified mail return receipt considering the jerk you're dealing with)?

You do have the right to have your own testing submitted and considered.

It's interesting that your state also puts out this information to parents of gifted kids where they acknowledge there are 2e kids and help available to them:

http://www.marylandpublicschools.org/NR/rdonlyres/047CAC81-DEBA-42FE-A058-0C5C45947512/17481/top_10_GT_08.pdf

Has the VP seen this?

Another good resource for parents of gifted kids is the hoagiesgifted.org site. There's some info on 2e resources there.

A good reference book is Webb's "Misdiagnosis and Dual Diagnosis of Gifted Children and Adults...".

A lot of 2e kids are missed because they don't act that exceptional in the classroom. Even if they are identified the school often tries to deny these kids help because they're performing at grade level. There seems to be resistance on the part of some educators to the fact that these kids do exist. The Webb book even talks about this and our notions of what gifted is and how it often doesn't match up with reality.

Get all your ducks in a row, educate yourself and know your rights. If the school still doesn't smarten up (pun intended) get that advocate. We've been fortunate that our school has mostly tried to work with us, so we haven't had to go that route. Other people I've talked to (not in our district) haven't been so lucky--it seems like some school districts just count on the parents not knowing their rights (and the school's obligations) under state and federal laws and parents settle for being told the school can't help.

MGDAD
01-15-10, 02:40 PM
Yup, write a letter to the principal requesting testing for your son, and send it certified mail. I believe they have to do something within 30 days after recieving the letter.

His list of options for you is not correct. They must attempt to mainstream your son before resorting to a special needs classroom.

jskisses
01-15-10, 07:55 PM
Thanks again everyone! I've been up to my eyeballs in Wrightslaw, IEP info and just about everything else I can find and have gotten some great advice and a ton of info.

Made some progress today, I contacted the school system's office of special ed and had some 'annonymous' questions about the options I was presented with and she confirmed that he was wrong on all accounts. Because she would be the next step since I'm butting heads with the school, I went ahead and gave her our info so she could persue the matter. Went one further and sent an email to the VP to ask him to 'clarify' the options he presented me with and I basically recapped our meeting and I expected him to call me and say 'no, I meant XYZ' and didn't think he'd reply to the email, but he did and did not challenge or deny any of the statements I made re our meeting (paper trail anyone??)
Both the supervisor and the VP have promised a phone call on Tuesday to let me know when we'll be having our TEAM meeting to get the evaluations started.

If they won't/can't redo the IQ testing, I'm fine with that, b/c from what I've read so far, the 'loophole' to getting them to work with us even though he is achieving school goals, etc is if there is a discrepancy in the various sections of the IQ test. He tests superior in a few areas, and in things like processing speed, memory, etc, he has low average scores and the psych has stated this can be contributed to the ADHD, so this alone should qualify him for the IEP.

So much to digest, I'm printing a ton of stuff and building a little notebook so I can 'study' and go in there armed with info. I'm also keeping track of who I talk to and when, and will be printing the emails, etc and have them. J's therapist has agreed to attend the IEP meetings with me b/c they've had a long standing relationship and she was as appalled at the suggestion of a special ed room as the rest of us are.

Whew!

Thanks...I'm going to devour the new links you've all provided in a bit.

Justtess
01-15-10, 08:15 PM
I'm not sure what county you are in however, Montgomery County Public Schools published their Twice Exceptional guidebook a couple of years ago. It was one of the areas around the country that seemed advance with reaching 2e kids.

here is a link: http://www.wrightslaw.com/info/2e.guidebook.pdf

Maybe it would give you a few nearby resources and contacts.

jskisses
01-15-10, 09:23 PM
Justtess, thanks, that is the one I found. I've printed it off and will be using it to my advantage while working on my contributions to the IEP. Unfortunately, I'm not in Mont. County, I have a feeling that if I did, I wouldn't be having this fight!

JenSMP
09-08-10, 12:27 PM
JSKisses. I can SOOOO relate to what you are describing. It sounds oh- too-familiar.

My 7 year old was diagnosed as gifted long before an ADHD diagnosis, although the school would never have guessed. He was in a private school, so we HAD to have our own testing done. The school assumed ADHD. My son even repeated PK-4 due to "social immaturity." He was bored to death. We then had him tested. He scored in the "highly gifted" range (98th percentile), and that got me reading about giftedness. You might want to check out info on Debrowski's overexcitabilities in gifted children and google "adhd or gifted" and see what you find. If your child is gifted, it will explain a lot.

Now, that said, my son continued to struggle in the classroom (a very rigid classroom is not so good for gifted kids as they need freedom to think for themselves). He had trouble paying attention and had MAJOR prefectionism issues (read about that too-typical gifted trait). Long story short, we ended up pulling him and homeschooling for a semester so I could see for myself because I was convinced he just wasn't challenged and was in the wrong environment (not ADHD). Well, he was definitely challenged with the curriculum I did with him, and we still had lots of trouble with inattention and frustration.

I got him through KG in that one semester, and then he started a Montessori school for the second semester and completed first grade in one semester. Just after starting his new school we did end up having him evaluated for ADHD by a behavioral-developmental pediatrician, and he was diagnosed. I truly believe it is an accurate diagnosis. So, our child is gifted and has ADHD. It's not uncommon at all.

The problem is distinguishing between which behaviors are related to giftedness and which are related to ADHD. The doctor specializes in both, and she said the symptoms overlap. To her, if the treatment works, it really doesn't matter which triggers the behaviors. My son takes Concerta, and it has worked really well for him. It's not perfect, however, and we are now concerned with anxiety. I ask myself, does the anxiety stem from the ADHD, giftedness, or does it stand alone? There are even kids who have anxiety and are misdiagnosed with ADHD because their anxiety causes inattention and impulsivity. Ugh!

Remember the overexcitabilities I referred to above? They are also called supersensitivities, and my son has classic emotional hypersensitivity. Example: I told him the story about when he broke his arm when he was one year old, and he cried because he couldn't stand the thought of ME being sad and worried about him! This is pretty typical of him. He's very sensitive. His reactions to failure (perfectionism) or pain are severly exaggerated (MAJOR MELTDOWNS). You'd think he was being tortured! It all seems to match up well with gifted overexcitabilities, but knowing that doesn't help my son. I have to find a treatment that works, and while these symptoms may fit with giftedness AND ADHD, he also fits the bill for anxiety. I'm at a point where I don't think I care what we call it; I just want to help my son.

By the way, before the gifted or ADHD diagnoses, my son was diagnosed with SPD. We went the whole sensory processing therapy route, and personally it was no help at all. Not to be negative, but it's very costly, and unless you can afford to go every day or have time to do all the exercises they want you to do at home every day, I feel it's a waste of time unless your child has severe SPD (and it doesn't sound like he does). If the diagnosis allows your son to get extra help at school, by all means, go for it! If not, it's one of those things that helps for the hour or so after the therapy session, but not long term. You can do most of the things they'll do in therapy at home. Get a book, read online, you'll see there are tons of SPD exercises and interventions you can try. They work if you do them on a daily and consistent basis. I've had multiple friends try the same thing with the same result. I'm a speech therapist, and even my friend who is an OT and does SPD therapy (and has an autistic child) admits it's not that helpful unless it is a severe case and must be done regularly-not once or twice a week for an hour. Severe cases of SPD result in children who will (examples): eat only yellow food, can't touch anything wet or grainy, refuse to wear socks, scream bloody murder if a tag touches their skin, etc. Many gifted kids are hypersensitive to touch, but they aren't non-functional. Ok, off my soap box now. Sorry about that!

I guess my point is, devour the information so that you understand your child, don't assume he actually has every childhood disorder known to man, and understand that b/c the symptoms overlap so much you may never know exactly what causes the behaviors you see in your son. It sounds like giftedness + possible ADHD, and to me it sounds like an environmental change might be good. I don't know if that's possible, but if not push for the school to accept that testing or have them do their own if you can. If he can get into a gifted program, it might be just what he needs. Another option is to ask the teacher to give him more challenging work (I know, she'll say he's already having trouble with the work I'm giving him), and it might help. It would be really great if the teacher could give him a special project to work on that might satisfy his need to create and explore a topic of interest. If he's gifted, trust me, he has this desire even if he doesn't know it.

Good luck, and please keep us posted. Now I'm off to find some advice on anxiety!

JenSMP
09-08-10, 12:28 PM
Oh, forgot to mention, check out davidsongifted.org. Their forum was a huge help when I was going through the initial diagnosis of gifted, and then ADHD. The parents there are amazing and very knowledgeable about giftedness. They even have a 2e forum. You might even see my old posts when I was freaking out and asking a new question every two minutes! LOL