Gifted Issues Discussion homepage Forums Twice Exceptional 2E suspicions/turbo parent?

Maybe it is that I know I am about to spending time with my relatives and I am gearing up for the "he seems fine, quit worrying about him so much" line but did any of you with 2e kids ever feel like everyone thinks you are crazy.

We had private IQ testing done to help us decide on early kindergarten and now we are heading towards seeing someone about suspicions of dyslexia.

All this and by the calendar he isn't even supposed to be in kindergarten until next September. I can see why some people might think this is crazy.

On the other hand, he has a Sept. birthday, he was bored with preschool and early kindergarten seemed to make sense - and it has worked out well.

As for the dyslexia, there is family history and plenty of other indicators. Of course the indicators are all within the realm of normal too so when I voice concern I feel like I am some sort of turbo academic stage mom.

Call me crazy too.

You have enough clues to be worried about this. I'd go get the dyslexia testing. If you find an issue, you can work on it earlier. If there is no issue then you can stop worrying. We knew that dyslexia ran in my husband's family. The school thought that we were crazy (and still does). We waited to test until after first grade. I wish that we had tested after kindergarten. We might have been able to avoid the "year of tears." Remember, when your kid is 2e, the normal rules just don't apply. You will need to get used to not caring what other people think.

Better crazy now than sorry you missed something and have to play catch-up later on - especially when it is your own child you're worried about.

I really don't stress too much about what other people (relatives, friends, etc) think about this type of 2e thing though - I really don't discuss it with them. When we get together with extended family we just have fun touching base and asking about what the other folks are up to, or talk about the fun things we've been up to in our own family. It's not that we're trying to hide anything - when questions come up I don't mind talking about it, especially if we have some experience that might help someone else who's not as far along in a similar journey. It's just not something that I feel like I need to talk about with family. OTOH, our family doesn't usually ask us things like "how is school going?" and they aren't the type of folks who brag about their kids being in gifted programs or great athletes or whatever, they're just more about hanging out and having fun

Re being concerned - I think most of us 2e parents here can really empathize with how it feels to be concerned when your child is really young and the things that you're worried about are also things that might still be within the normal range of development. My only regret about that time is not relying more on my mom-instinct when I asked about those vary same things and ds' teachers were so quick to reassure us that "it's completely normal". My gut feeling now (ha!) is that most of the time when a mom has one of those gut feelings that something isn't quite right - there's a reason for the feeling. I've met quite a few 2e moms who've had their suspicions confirmed - it wasn't always exactly what they suspected but it was *something* - and honestly, I've never met a mom who was questioning at that stage who had a child who was typically developing. I'm a very small statistically insignificant sample, so my stats really mean nothing, but I'm just sayin' - that gut instinct is most likely there for a reason. You might find out it was nothing - which will be great. If you find out it wasn't nothing, you'll be very glad you didn't worry about other people thinking you were turbo-parenting.

Hope you have a Happy Thanksgiving!

polarbear

I am in the "need to know" camp when it comes to relatives and testing/info on my kiddo's academic progress and issues. That includes my parents and siblings. I have shared a couple of writups with my parents over the years about younger D with my parents, but most of the time I have not mentioned what is going on. In fact, my parents were making me so crazy about my D's college search this year that I finally put a moratorium on discussing it with them. Told 'em we would let them know on May 1 (the day she needs to commit) what she has decided. They have stopped asking, although they do try to pump info out of my older daughter or get my siblings to do it. But we are wise to these tactics.

I think the trouble I have at keeping everyone at arms length when it comes to our kid's issues is that many of our relatives have relevant experience. We have people who were accelerated, people who went to gifted magnets, gifted people who went to plain old public schools and even other 2e's.

The trouble is that since they (or their kids) turned out just fine they think what they did or didn't do is the way to go. Actually everyone turned out better than fine. You could play a game of Scrabble with all the post-nominal initials gathered around the table.

I get comments like

"Who cares if he is dyslexic. It isn't like he'll be illiterate. He'll figure it all out without any greedy therapists involved in his little five year old life. He'll figure out what works for him and be fine. He is an engineering type. There are worse things than being an engineer you know...(cough)...lawyer...(cough)"

And

"I am pretty sure the gifted program at my school was cancelled to provide new carpet for the football locker room. I turned out fine. Just pick a house you like. It isn't like you are trying to choose between the school district where they might be maimed and the one where they might become drug addicts."

Everyone means well and I know they are trying to help by minimizing the stress of our parenting decisions. It still makes me feel crazy.

I think that "feeling crazy" is probably a universal experience for 2E parents - especially if your child's combination of E's have them dazzling the world with their giftedness at a young age. I picked up on DD's hand-eye coordination/fine motor issues at 18 months. It took 3 1/2 years - until age five - to even convince the pediatrician to send her for an evaluation. "She's just SO FAR ahead of the curve that things that are age appropriate appear to be deficits even when they're not." We picked up on what we thought was likely dyslexia at age 4 and were patted on the head, the arm, the shoulder - whatever body part was accessible - by just about everyone. The school refused to even consider her for testing "She'd never qualify she's too smart." That "mom gut" is real - it knew all along but I couldn't convince people - people who were essential to be convinced. Forget "civilians" like family or friends. They would actually laugh at the idea of there being an issue. Or worse - speak to me in that patronizing tone of voice that I am sure all the 2E parents here know all too well.

With the last set of tests showing her scores ranging from above the 99th percentile to below the 1st percentile I don't get much of that anymore. I still get "Oh, not DD! That's not possible!" That 99th/1st percentile set of numbers convinces everyone pretty quick these days. Throughout this process I have said "knowledge is power" and sought as much info as I could get. It is a rough road that is full of lots of curves and bends. I have learned there are certain people I would never reveal anything to and others to whom I can bare my soul. There are lots of LD issues in DH's family but sadly even more denial. My 85 year old FIL - who turned down spec ed services over and over for DH while he was still in elementary school - cries his eyes out if we mention any of this around him. Not over concern for DD or guilt over DH but because of his own awful school experiences with undiagnosed LD. "They used to tell me I was dumb and that I wasn't trying hard enough. It didn't matter how hard I worked I just couldn't do it." You really never know what is behind that other person's reaction. I think you need to just stick with your gut on this. As others have said if you feel like there is a problem there is a good chance you could be right. Especially with family history.

Good luck!

I am you, and you have my son!

DS4 will be 5 next September. I have been worried about the 'red flags' for the past year. This is a child that did not talk until he was 3.5 yrs old, but knew all his numbers and shapes and colours by 18 months. He could put together 30+ piece puzzles by 2 yrs of age. He has been building the most intricate train tracks around our house since he could fit the tracks together at around a year of age. He is smart. Scary smart. BUT.... he can't learn his letters. He has been trying, but they just don't stick. He refuses to hold a pencil, he has never coloured a picture (just a scribble or two before bifting the crayon across the room in frustration).

His sister has dysgraphia and mild dyslexia. I feel I have valid reason for concern. Everyone else thinks I have lost my marbles. "He is only 4! He isn't supposed to know his letters and be able to print yet!" I get tired of talking about it. I have one friend with a gifted son the same age and she gets it. Her son can do these things and she understands why I am worried. If DS had normal development aside from the letters/printing, I would be less than concerned. It just is out of keeping with what I see and know. He learns everything else incredibly quickly.

Maybe it is my mommy-sense on overdrive. I am so determined to NOT let him fall through the cracks for so long, like his sister did. I do feel that I have reason to be concerned. For the time being, there is little I can do about it. I won't have him tested until he is in school and the difficulties can be corroborated by his teacher. My daughter's pyschologist suggested that testing for diabilities is more reliable at an older age, so we will wait. For now, we are using all the tips and tricks I have learned from helping my daughter. I figure, it can't hurt for him to have the extra help with learning his letters!

To a certain extent they are right ... most kids with high IQ's eventually figure out how to overcome the obstacles in front of them or how to go around them. My husband kept telling me that when our youngest hit midschool, things would start to kick in and he'd catch up. And they have started to kick in, and his isn't just catching up, he is now excelling and starting to show more of his Giftedness instead of just his learning disabilities. So, the been there, done that, and don't make your kid feel awful because of overreacting is coming from their own experience and a good thing to keep in mind. His voice of reason is what helped me make decisions like not making my son study for hours for a spelling test he was going to fail anyway. It is just a good thing to keep in the back of our minds that it is all a balance.

That being said, it in no way changes the fact that if your child is 2e that early intervention and therapy would be a huge help and give your kiddo more tools to really succeed. My huge regret is that I didn't listen to my gut and get him tested earlier than second grade, he went through years if speech therapy, occupational therapy and is in special Ed where his education has focused on remediation not acceleration. Had we started earlier, maybe he wouldn't have had to struggle so hard, but I'll never know because I didn't push.

Recently my husband made the comment that while he has certainly done well in life, he often watches how hard I fight for changes at school for my son and how much I've worked to find the right help and he wonders just what more might have been possible if someone had fought like that for him,

See, these comments are beacons of hope for me. I don't have experience with learning disabilities in my family (turns out my dh's brother might have undiagnosed dyslexia), so I love hearing things will turn out fine. I actually do think that's true in regards to my 2E son, but I like hearing it. Still, it doesn't stop me from getting tutoring and services and I wish I had been educated enough to know I should have pressed on when my son was quite young.

I KNEW when my son was 4 that something was wrong, but anyone I mentioned it to ignored me because he was so young. Plus, his twin is a huge outlier and people always said, "don't compare him to his twin," "it would be hard for ANYONE to be a sibling to [PG boy]." But I also knew they were similar intellectually, so my son's reading and writing misses didn't make sense.

Finally in 2nd grade, I had him privately tested and the tester said she knew immediately he had dyslexia-- from his writing sample I sent in before the test. (Now why wouldn't the school/teacher recognize that?!!) The school still wasn't in a hurry to remediate, so we hired a private tutor who worked with him 2-3 x week for almost 3 years. He's still not where he should be in writing, but he's an advanced, but slow reader now in 5th grade. I wish we could have started tutoring in K to avoid the year of tears, as someone mentioned, but also before he got the attitude that he wasn't good at school.

We're still working to undue the damage as he heads to middle school next year.

If I were you, I wouldn't talk about testing to your family if their comments bother you or dissuade you from testing. And I think you should absolutely be testing now, rather than later. If it turns out there's no problem, it's one less thing to worry about!

I felt that everyone thought I was crazy including doctors. All they saw was a smart kid. He was born with hypotonia and couldn't walk until he was 18 1/2 months old when all other babies in our family walk before they turn one, but he started reading on his own without being taught a year later. We could not get OT or PT because it was as if even his doctors thought he couldn't have too much wrong when he talked like a kid several years older. We had difficulty getting referrals from his primary care physicians.

They almost had me thinking that maybe he was a little lazy and that was why he didn't have as much endurance for physical activities and couldn't write for more than five minutes before complaining that his hands hurt. It was horrible to have people think I was either crazy or lying.

I feel like we are in some never ending episode of "Mystery Diagnosis." Now that he is 14 and needs surgery we are getting a referral to see a geneticist to make sure he doesn't have an underlying genetic disorder that could cause surgery complications. My anxiety is at a very high level.

People finally believe us now but because of what we went through I feel extremely isolated. I can't be around my extended family because of the stress right now, not even for Thanksgiving. I will visit my husband's family instead. I never felt like they doubted me.

My parents thought we were exaggerating for sure in regards to our son's behavior issues, until they kept the kids for a week while we were out of country. Upon arriving home I got the whole "wow, I think something's up with DS!" Gee, you think so??

They all were telling me he was gifted, though, long before we had him tested.

This rings true for me too... I have son who is so similar to Lori H's... very intelligent but has hypotonia (as well as vision issues). He uses words like "nefariously" but can't write his name legibly. I was told today by DS' teacher that I "need to relax," which I get why she said that (I spend an awful lot of time tryign to help, advocate and try to figure out the best way to help my son) and maybe there is some truth to that but ... how can I relax? when I do relax my kid gets mislabled, misdiagnosed and misundertood ... he get anxious and depressed because he is so complicated and trapped. I am taking my guy to CHOP neuromuscular clinic in a few weeks in attempt to also see of we can find out they what and/or why behind his hypotonia and vision disorder (both of which are neuromuscular). My mom, and I think perhaps sme others, seem to think I just need to relax - to "stop looking for problems." Really, how can I do that? Anyway... sorry that I rambled I just can relate!

It's really tough to hear this as parents, particularly when our kids are young and we are still working through figuring out what's up. I think I became somewhat used to dealing with it eventually. The one thing that struck me when I was reading this again this morning is that now that my ds is older... he's starting to have to also deal with those comments and thoughts (he has issues very similar to Lori's ds). I suppose part of going through the comments as parents is what we need to do to work through how to model for our kids how to deal with them, which they will ultimately have to face.

polarbear

I should add I do like hearing that things will turn out fine (even great) ... etc etc... I like those anecdotes, the success stories - they do gve me hope. My husband is one... he had hyponita and some toher issues... They treated him kindly at school but treated him as he were slow cognitively and he blew them away in middle school. So... I ove those stories. I just hate the "you're lookig for problems, he is/will be fine" type sentiments. There is a difference albeit subtle at times. My mom told me I take my son to "too much therapy" - "I don't like all this therapy!" she said "He'll be fine! The more therapies you go to the more problems you find!" Just tell them "no" enough... Like soemone is forcing me to take my kid to therapy. Love her but I really wanted to tell her to shove it.

DH was not on board with the dyslexia concerns until he started reading the beginning BOB books with DS. The school asked us to work with him at home and I was the one doing it. He did it once and was convinced something is not right. The repeated struggle with simple sight words like "the", "is" and "and" is so noticeable. Plus, he has reversals, inversions and transpositions like crazy.

Slide 24 at this link seems about right given the stuff he comes up with while trying to sound words out.

http://neurolearning.com/ReadSpellWrite3slides.pdf

We have all that in our families too. I think part of the difference may be in family personality - my dh's family (which has dyslexic family members and I'm guessing other older relatives with expressive language challenges) just doesn't tend to talk about this type of thing. So on the one hand, that's good, because it means no one is offering up not-asked-for-advice... but otoh... it also means our ds had been already diagnosed for several years before we accidentally found out he has a cousin with exactly the same challenges... and honestly, it would have been helpful to know that way before he was diagnosed





It's not always easy to see this when you're in the midst of struggling with possible 2e issues (or any kind of a challenge).. but, fwiw, parents of typically developing non-gifted non-athletic not-much-of-anything-out-of-the-normal kids can also act this way too. Sometimes it helps me to not personalize comments like this as related to the actual issues my child has or to my parenting, but to remember the comments are coming from the personality-type of the person who is making the comments. That at least makes it easier for me to brush the comments off and ignore them.


Honestly, I might tell you the very same things with the absolutely best of intentions and because I care. My child is older. He is ok. In spite of that not being delivered in the ideal way as a message, there is caring behind it and there can be understanding - I (and perhaps your relatives) have once been in the very place you are now worrying about your child and not knowing what is going on. Try to just tell yourself they care and then change the conversation to something that's easier to talk about.

And I know - totally easier said than done!

Hang in there -

polarbear

We have all that in our families too. I think part of the difference may be in family personality - my dh's family (which has dyslexic family members and I'm guessing other older relatives with expressive language challenges) just doesn't tend to talk about this type of thing. So on the one hand, that's good, because it means no one is offering up not-asked-for-advice... but otoh... it also means our ds had been already diagnosed for several years before we accidentally found out he has a cousin with exactly the same challenges... and honestly, it would have been helpful to know that way before he was diagnosed





It's not always easy to see this when you're in the midst of struggling with possible 2e issues (or any kind of a challenge).. but, fwiw, parents of typically developing non-gifted non-athletic not-much-of-anything-out-of-the-normal kids can also act this way too. Sometimes it helps me to not personalize comments like this as related to the actual issues my child has or to my parenting, but to remember the comments are coming from the personality-type of the person who is making the comments. That at least makes it easier for me to brush the comments off and ignore them.


Honestly, I might tell you the very same things with the absolutely best of intentions and because I care. My child is older. He'll always be dysgraphic. He might not ever be able to write a paragraph independently. He's wicked smart. but didn't always have access to gifted programming at school. He won't ever like to play team sports. He's most likely going to be an engineer. He is ok. In spite of that not being delivered in the ideal way as a message, there is caring behind it and there can be understanding - I (and perhaps your relatives) have once been in the very place you are now worrying about your child and not knowing what is going on. Try to just tell yourself they care and then change the conversation to something that's easier to talk about.

And I know - totally easier said than done!

Hang in there -

polarbear

We have family members who have had...opinions...about my daughter and her diagnoses. I'd say to ignore them, which is mostly what I've done, but sometimes it simply isn't possible. I will say that in a couple of cases I've been soundly vindicated as she's gotten older and they've gotten to know her better. Same thing with her teachers, who think I'm nuts at the beginning of each year and usually "get it" by November.
Either way, about all you can do is embrace the helicopter and the straightjacket, and move on, because what they think of you won't change with explanations and arguing. The only thing that will help is that they get to know your kid (especially during a few of his or her particularly odd moments).

edited to add: I have a couple of friends who have older and younger girls with similar constellations of diagnoses to my daughter. None of us have chosen to handle things the same way, though we've all had about equal success with our choices. The "she'll be fine" phrase gets tossed out there a lot from older to younger. And judging by the facebook photos I see of one child having the time of her life at college, I'm inclined to go with that.

Thanks for the responses. It was fine. It came up a few times but it seems the collective opinion of the family is that dyslexia is "real" and should be either diagnosed early or ruled out. I think the OT for "sensory issues" is the one everyone thinks we are wasting money on. Whatever.

Now, the new question. DS can get on the Eide wait list with an appointment in Oct. 2013. Since we are local, he could be in earlier if there is a cancellation. It is pricey and there is a long wait but they are experts in gifted dyslexics. We could probably get him in to see someone else earlier and pay less for the assessment. Setting the issue of cost aside, would you get an earlier appointment with a regular doctor or a later one with an expert?

I am inclined to wait. He is in early K. If diagnosed next fall it would still be early. He will have just turned six.

I am interested in hearing from anyone who might have had a diagnosis missed early with a regular doctor only to have it discovered later.

If anyone has had a good or bad experience with the Eides, I would like to hear about that too.

I would wait. We had my son's dyslexia diagnosed at a children's hospital. The diagnostician had a rote list of accommodations and suggestions, but I would have loved to have expert opinion that related specifically to my son, which I think you will get at Eides. Since you do have a good sense about whether he has dyslexia, I would work on intervention strategies myself in the meantime. While most cases of dyslexia are caught later than 1st grade, the earlier the better for intervention. You can prevent him from ever being behind if you use intervention techniques now, which is something I wish I would have known to do.

Since the Eides are the gifted dyslexic gurus, I'd be inclined to wait for the them. We have not gone ourselves but have a good family friend who had their 2e, PG son test with them. The family had an excellent experience with the Eides.

My DD fits the Eides' description of a stealth dyslexic to a tee. We have gone through less expert testing locally. The results have been mixed. We have received reports with differing interpretations of DD's challenges -- one clearly stating that DD is a gifted dyslexic, another that reflected that the testing center didn't know what to make of her. BTW, the former recommended the subsequent testing with the latter. The latter freely admitted that DD did not meet the typical profile that they saw in their center. We have not pursued any further testing because we were able to get DD a 504 plan after a fair amount of arm twisting with the results that we had. We may need to look at again as we move to middle school.

I'll start by stating that I'm a huge fan of the Eides and I'd *love* to be able to have my ds evaluated by them - I think that he fits the type of child they are interested in to a tee, and that we'd get a lot of extra information from them as well as a unique viewpoint re ds' challenges based on their research. Unfortunately we're not local and although we've considered traveling to see them (I would like their opinion that much - that says a lot for me :))... we haven't for a few reasons.

Re - what should you do, living local yet having to wait. If cost isn't an issue, I don't think waiting until October 2013 is terribly long to wait for a child who will be in kindergarten in 2013 and who isn't struggling in a huge way at this point in time. OTOH, I also don't think that the Eides are the only experts out there, particularly not in an area as large (population) as the Seattle area. The Eides may be the Rolls-Royce of this type of evaluation (2e stealth dyslexic) but that doesn't mean your other choices for neuropsych evals are not great choices too. I'm not sure you need to consider another eval since your child is still really young... but fwiw, I wish (in hindsight) that I had known as early as possible about my ds' challenges, and the first thing that really helped us see what was up in a cohesive way was his first neuropsych eval. He didn't have his first eval until he was 7, but I do believe it would have helped to have the eval when he was 5 and not yet in school - he'd had ability/achievement testing already for our school district's gifted program that showed a discrepancy that is a red flag for his type of LD, so if he'd had a private neuropsych eval at that time I am guessing we would have found out info about his particular challenges which I know would have helped save a lot of heartache and struggle in his first years of elementary school (even perhaps helped in preschool).

The other thing I'd ask for input from other clients on, and consider before choosing to wait for the Eides is - how accessible are they if you have questions after the eval or if you need a one-hour follow-up appointment for questions 6 months or a year after the eval? I've valued having our ds' testing done through a neuropsych who was accessible for follow-up questions and discussions. A follow-up interview after testing/draft report is always a part of every package (at least most neuropsychs include this).. but parenting my 2e kids has been complicated, and I've found that although I may think I've covered all my questions in that follow-up parent meeting with the neuropsych, I *always* have more questions after I've had time to let that meeting sink in. Things change with 2e kids too - we left his first neuropsych eval with a great, solid game plan. One year later we had a lot of good info from that first part of his game plan and it was obvious some things worked great, others needed tweaking. A one-hour consult with the neruopscyh was really helpful at that point, and we've done that again a few times over the years. We also needed a 3-year update on the testing for our own sanity and understanding prior to ds entering middle school, and I found it helpful to be able to have that testing through the same neuropscyh who'd tested ds previously. I suppose it's sort of like finding a good pediatrician you can return to - a neuropsych eval wasn't a one-time thing for our 2e ds so I valued being able to have accessibility to return and that's one thing I'd want to feel assured about with the Eides... *if* you are only going to be able to eval one time.

One last thought re if you choose *not* to go with the Eides - there is still a ton of useful info to be gained by reading their books and following their online resources.

I'll be interested in hearing what others who've seen the Eides think - I've only heard good things about them!

Best wishes,

polarbear

I am a gifted dyslexic and was not diagnosed until college - by my TA no less! So I have always been very concerned about the hidden compensation affect of being gifted - but things changed over time with DS now 6.5 which makes waiting not such a bad thing, although there are things I would recommend - if you haven't already gotten this advice already - get all the other testing done first - vision and OT. Turns out DS has mild vision issues which ironically impact primarily his ability to do the timed tests on WISC and puzzles. He was such a snail but eventually did it, he just had to work so much harder at it. And he they found a few other oddities. But between 5 and 6 he has stopped reversing his numbers - although when tired sometimes the 5 is backwards again. So that seems age developmentally appropriate. But his writing is still a mess - its huge, and he makes bizarre spelling and punctuation mistakes which he does not do when speaking. This is being remediated by the school OT and his words are now more legible and the use of spacing more appropriate. But his teacher has recommended they start keyboard training with him - I thought we would have to fight for this, so happy they have suggested it. He will be doing both typing and writing homework, basically they have recognized that he can't get his ideas down as effectively due to the writing issues. But we are But there might still be some dyslexia aspects - but it is not affecting his reading which is his strength so its impossible to tell.

So I would suggest getting vision, OT and that stuff done if you haven't, and waiting for the Eides next year or you could get WPSSI testing now and wait until 6 to see the Eides so they could do the WISC. For me it was when it began to affect him that prompted action, and that was when his writing was clearly far behind in PK. But we didn't get a good fit with the OT so we didn't stick with it and then in K we went through the school system. The OT told us that getting them in K is what they prefer because when they get them by 3rd grade its tougher to remediate.

DeHe

It will probably take a few months to get an appointment with someone else anyway so the difference between waiting for the Eides and a "regular" evaluator is probably not going to be that long. As someone who spent $3k on a neuropsych eval that was deemed "invalid" I would absolutely wait for the experts. No question about it.

Also you will probably have a good chance of getting in sooner from the waiting list since you are local. People travel to see the Eides so I am guessing that a number of people book a year out then can't actually make the trip. We were able to get in 2 months early that way with a local guy for a "redo" evaluation even without travel in the equation.

FWIW, we decided not to wait for the Eides, and had our daughter evaluated by a neuropsych in Bellevue (who they actually recommend on their website). She diagnosed her with dysgraphia but not dyslexia, and was able to thoughtfully articulate the reasons. (I emailed her a question about "stealth dyslexia" with a link from the Eides, and she wrote me a very nice email explaining why she thought that dysgraphia was a better fit with DD's testing profile, but acknowledging that she does have many of the characteristics associated with stealth dyslexia.) I really liked her a lot, and she has been very generous with her time answering follow-up questions by email.

She also had a long wait to get in, but it was 5.5 months, not a year. We could have gotten in about 2 weeks early with a cancellation, but it was on the day of a field trip to a water park and we decided that DD would not be in a good frame of mind for testing if she had to miss that.

So while we wait, what do we do?

I talked to DS's teacher yesterday about our concerns. She had noticed some of the same things and wants to help him. She had a copy of the Gift of Dyslexia at her desk and said she would review it to see if any of the remedial measures mentioned would address some of the struggles she sees. She is open to suggestions for activities.

As I mentioned before, he attends a small private Montessori. There is no special education department.

Each kid has an individual plan each week. His teacher prepares them over the weekend and they are different for each kid. So every Monday he comes in he has a sheet that tells him what is expected for that week. Here is an example:

Read two BOB books with teacher
Do two phonics workbook pages
Do two handwriting worksheets
Do two math activities
Learn song relating to nearest holiday
Paint picture relating to nearest holiday
Do puzzle relating to science study of the month (skeleton, tree, spider, etc.)
Make science theme book relating to study of the month (page one shows spider and kid colors whole thing, page two shows same spider but they only color the pedipalps and write pedipalps under it, etc.)

I don't think she is planning on changing the whole curriculum for him but if there is an activity that is dyslexia friendly, she would do a substitution. She mentioned The Gift of Dyslexia says to have the kids make letters and words out of clay. So she might do that instead of the worksheets or something.

Every plan meets the kid at their level so there are a variety of workbooks and reading levels being used in the class. DS loves science so in an effort to support his strengths she does experiments with him.

Any suggestions for activities that could fit into this framework?

I know everything I read says multi sensory instruction but what does that look like and could some of it be done in his classroom?

Trace letters and words with finger in sand paper, onto a drawing app on a tablet using a finger or using the full arm to draw into the air. The tactile experience helps and makes it large motor with swooping gestures rather than the fine motor of holding a pencil.

For phonics, you might ask about using Wilson. It is geared for dyslexics. There are other similar programs as well.

For artwork, suggest a paint program or app. My kiddo used to make characters from the shapes in PowerPoint in kinder rather than draw freehand.

It's great that you have a supportive teacher and school. Try buying the teacher a copy of the book "101 School Success Tools for Smart Kids With Learning Difficulties" http://www.amazon.com/School-Success-Tools-Learning-Difficulties/dp/1593635338.

When DD was first diagnosed 2E I spoke with one of the authors and she suggested it as a resource for teachers who want to help but just don't know quite what to do. We got a copy for DD's first grade teacher last year and also bought a copy for ourselves. It has useful strategies for all sorts of learning issues and gives concrete tips on how to alter assignments for various needs. We haven't bothered giving one to her second grade teacher because, well, she's not exactly receptive.

HTH

New question:

How involved was your pediatrician in the 2e diagnosis? We have no real relationship with the kids' pediatrician. At this point DS5 only sees her a few minutes a year at his check up. Everytime we see her it is like she is seeing him for the first time. Early on this was a problem. She'd forget he was premature, forget she ordered PT for torticollis, etc. We'd change but her office is nearby and we rarely use her anyway.

I don't really care what she thinks (like we should wait and see instead) but at the same time it seems weird to see a neurologist without talking to the primary physician first. Our insurance probably won't cover it anyway so a referral isn't the issue. I am just curious what other people have done.

Our pediatrician didn't make the 2e diagnoses; those came from professionals (neuropsych, speech pathologist). We did consult with our ped prior to seeing a neuorpsych however - in our area you can't get in to see a neuropsych (or neurologist or any type of medical specialist) without a referral from your primary care physician. We also can't get into see OTs/SLPs/etc without a referral from someone - it can be a ped or neuropsych or psych, but we still have to have a referral.

When we consulted with our ped, we simply told her what was going on with our kids that we were concerned about and then she made the recommendation re who to see for an eval, and I found their advice helpful in that they had knowledge from previous patients of which professionals would be more helpful than others and which professionals focused on different types of problems, things like that. I'm not sure that you need any info like that because you have a good idea of what you are seeing in your child, and the Eides don't require a referral - but otoh, you could always put a call in to your ped to ask for their input. Another difference here is our ped does remember our kids and asks about how the follow-up went for neuropsych etc evals.

polarbear

I first started bringing my concerns about DD's fine motor/ hand-eye coordination to our pediatrician when she was 18 months old and ped refused to make a referral for an OT eval until DD was 5. That was a 3 1/2 year delay. She knew immediately - and by immediately I mean by the time DD was a few weeks old - that DD was "exceptional" in many ways. She kept telling me "She's so far ahead of the curve things that are age appropriate appear to be deficits even when they're not." Turned out to be a big problem. When DD was having such an awful time at the terrible magnet school ped was no help. When DD had a concussion she refused to send us to a neurologist for an evaluation. So all in all not a lot of help there.

When we got the initial testing by the school district showing such significant issues our ped was on vacation. I spoke to someone else in her practice 3 times trying to get referral info for a neuropsych. The 40 point IQ difference was dramatic enough that even that doc who had never met DD wanted some further investigation. We also have a relative who is a pediatrician (and a friend of our ped which is how we came to work with her - making it very awkward to switch once I lost faith...) who looked at the paperwork and helped us decipher some of it. Ped did not call us once she was back from vacation but hit the roof when we provided her a copy of the neuropsych report we got a few months later that indicated suspicion of a seizure disorder. She called and reemed me out for "doing this on my own" and "leaving her out of the loop." How dare I????

I know there are some pediatricians who can be a great resource in all of this but don't count on it. After the neuropsych got us into the *leading* pediatric neurologist in the world our ped made us go see the local one "just to have someone local." It was a terrible experience - that doc really resented our wasting her time and of course felt that she would have been perfectly able to diagnose DD - seeing world renowned guy first apparently insulted her.

Ped is now on board somewhat but I am not comfortable with her anymore. We are stuck, though, because she has become a player in our dealings with the school. Changing would give the appearance of "doctor shopping" so we are staying put for the time being.

HTH

The tradition seems to be that pediatricians do "medical" stuff, but gifted is an "educational" thing and totally not in their purview. 2E is sort of half in the purview, because some disabilities are "medical," but we found that our ped. (excellent otherwise) was not quick to recognize DS's autism, and that slowed our progress in figuring him out.

I eventually realized that I am the one who coordinates my kids' care; they are complicated, have many professionals, but I'm the one who tracks the big picture. Our ped. is great for medical stuff (both rare and common things); but I don't hesitate to use specialists. I do keep the ped. informed of the big picture, because I want *someone* to know it; but it's mine to manage.

Our health insurance claims to be moving toward the "medical home" and "patient-centered care," both of which involve having one practitioner who has the big picture under control; but I don't see it happening for our family.

DeeDee