Anyone Have Thoughts/Experience re 2E Kids?

[sste]

So this is what the neuropsych wants us to have assessed and hopefully rule out: http://www.mayoclinic.org/diseases-c...n/con-20033203

Apparently it is treated with vision therapy, I think legitimately so though I agree there is alot of wonky vision therapy going on out there. I guess DS did so poorly on all the visual processing and plus he has glasses since age 2 and an eye that turns in (though remediated with correct prescription). Through some extreme pleading on the phone the developmental optometrist bumped us into an appointment next Tuesday because the neuropsych did think sorting out what was going on in that was the first order of business.

On the reading, I will tell you where I am coming from in wanting to add the extra tutoring. Our neuropsych basically told me it is sort of a race: time versus fluency. The more intervention that DS gets early (short of the point of burn out and anxiety) the more likely he is to have a smaller "residual" in terms of reading slowly and fluency . . . possibly even no residual though she says that is uncommon. For that reason she rec'd we add more private tutoring. Also Sally Shaywitz the Overcoming Dyslexia author recs one hour per day five days per week. All of this has the added component of 20 or so minutes of parent "reinforcement" at home. I am struggling with the anxiety/stress piece but the thing is that DS ENJOYS the reading tutoring and actually his other services -- I know that sounds odd! The therapists are all nice, he gets stickers galore, and from the start of kindy he has always recognized he needs these services. One of the first things he told me about his new school at the start of K was that it was a good school because it has therapists for him. I see my role as DS's agent, negotiating now for what the future DS might want so that those options are available to him. It is a nerve-wracking position as I am very concerned about ruining his childhood versus losing his best window of early intervention. My thought is to try the additional tutoring, with a kick-*ss reward system and if I have to cut back then I will.

Inmypjs, I totally agree about homeschool or partial homeschool making all of those therapies possible. I just do not know what my district will agree to. I can't do full home school as I work and love my work and also DS--just speaking about my DS here who is in his own way extremely social and who has a big age gap with his younger siblings-- would absolutely miss school and his friends if we did 100% homeschool.

[Cam&Clay]

I'm enjoying reading through this thread. We should be receiving the results of DS2's testing in the next week or so. He reads way above grade level but struggles with writing along with some pretty severe anxiety issues that we have just turned to medication for. I wouldn't be surprised if he turns out to be 2E.

[Gena]

I understand what you are saying about the reading programs. I just think there is a difference between saying that a specific program is crappy for your kid or for a certain disorder and just saying that it is outdated and crappy overall.

Like I said, I understand that you are frustrated and feeling overwhelmed. I can relate. My DS has a list of diagnoses as long as my arm. He's not 2E, but the school gave him a savant label, which has its own unique set of challenges.

So this is what the neuropsych wants us to have assessed and hopefully rule out: http://www.mayoclinic.org/diseases-c...n/con-20033203

Apparently it is treated with vision therapy, I think legitimately so though I agree there is alot of wonky vision therapy going on out there. I guess DS did so poorly on all the visual processing and plus he has glasses since age 2 and an eye that turns in (though remediated with correct prescription). Through some extreme pleading on the phone the developmental optometrist bumped us into an appointment next Tuesday because the neuropsych did think sorting out what was going on in that was the first order of business.

Yes, convergence insufficiency is widely considered to be legitimately treated by vision therapy. There is a lot of questionable vision therapy out there, but CI therapy is pretty well-recognized. Since your DS has been in glasses for so long, I assume you've had a pediatric ophthalmologist (not an optometrist) rule out any sort of structural issues with his eyes. If not, you might want to check that out first.

DS has also been in glasses since he was 2 and had strabismus (eye turning) and amblyopia. He patched for a year when he was in first grade. He has albinism, which causes all kinds of structural issues in the eyes: foveal hypoplasia, iris transillumination, misrouted optic nerves, extreme farsightedness, severe astigmatism, etc. When we've been to autism expos or other events, I have several times met vision therapists who have insisted that they could fix DS's vision problems (after a long and expensive course of therapy). Uhm, no - not unless you can move his optic nerves and add pigment to his retinas and irises. So I understand you being leery about vision therapy.

Anyway....if you haven't checked out the 2E page at Hoagie's Gifted, you might want to take a look at it. There are some links to articles and resources. I don't know how helpful they are, but it may be worth a look. I'll have to edit with the link, since my iPad doesn't want to paste right now.

ETA: http://www.hoagiesgifted.org/what_is_2e.htm

[KpbS]

Sste,
I sent you a PM.

[hillview]

Yes, convergence insufficiency is widely considered to be legitimately treated by vision therapy. There is a lot of questionable vision therapy out there, but CI therapy is pretty well-recognized. Since your DS has been in glasses for so long, I assume you've had a pediatric ophthalmologist (not an optometrist) rule out any sort of structural issues with his eyes. If not, you might want to check that out first.

[sste]

I just wanted to thank everyone again. I am listening to what everyone is saying and except for the tutoring and vision eval I am mainly just getting us on waitlists right now and straightening out an insurance switch so we can get all these therapies covered starting January 1.

I feel ridiculous writing this but I guess what has upset me is that we were pretty sure about the learning disability but I have been in quasi-denial over the giftedness for a while. When DS entered early intervention at 16 months the therapists told me he could be mentally handicapped and then when he exited a year later they mentioned to me he seemed gifted. When DS started a short-term therapy at three his therapist told me she thought he was gifted and when we went back at six she pulled me aside and said that she usually sees parents who think their kids are gifted and she doesn't agree and thought the term was somewhat over-used. But from her experience with DS she thought he was quite unusual with respect to certain talents and would test as gifted. And I STILL wanted no part of it because I have a personal history of parental exploitation on this point (and I don't think I am as unusual as DS actually) and because I see it as a test that measures certain aptitudes which often have little or no correlation to real life success or contentment. And most of all I wasn't enthused because I see it as another difference that--while it has its advantages and positives to be sure--also has vastly under-acknowledged downsides. I think I want what every parent wants for their child -- for him to be happy and for the world to treat him kindly. And my sense has always been that while there is a sturdy fleet of angels on this earth who care for and champion those who are different . . . most people do not. And now DS is different in two marked and contradictory ways. I guess I am grieving a little.

[StantonHyde]

sste:

Of course you are grieving. And you will continue to grieve. On the one hand, it is a marathon--which means it is never over. It's kind of like whack-a-mole--just when you think you have something covered, it manifests itself in a new way or stuff that was going well will pop up again. It is really an organic process. It is not linear. And it is frustrating.

The good news is this. There are lots of people with learning disabilities who turn out fine in the end. There is one study I cling to that showed that kids who needed help and got it did better not only than kids who didn't get the help but also kids who didn't even need help!! Yep, what that says is if you have a kid who is bright but held back a bit my a disability, they will use that help in such a way that it unleashes their abilities and the unique capabilities of their mind. DS's first grade teacher has a son who is now in his mid-late 20s. He had dyslexia and had real struggles with math--until he got to high school/college where it was all concepts and not calculating. He is now a very successful engineer.

You will meet lots of people with good stories to share. I have been very touched by the people who appropriately shared their stories with me--it gave me courage and confidence. And in that line of thinking...

DS was a super bright kid in pre school. Could talk to you about all sorts of scientific things and had all sorts of neat ideas. He had excellent retention of anything read to him and he was very articulate. But he just wasn't into retaining what they did in play-based setting with regards to letters and sounds. In kindergarten, his handwriting was really bad and he still couldn't get the letters/sounds. I didn't think it was a big deal--he is our first and DH and I have lousy hand writing and I didn't learn to read till first grade and then I got an award for reading the most books that year. His teacher (who had a masters in reading) said he was a little late but she didn't seem really concerned. And then, in April of K, they told us that he needed to repeat K again. WHUCK???? He already has a late birthday so he is already a year older so it isn't maturity. I cried and cried. I got on the phone and started calling people I knew who had kids with handwriting and reading difficulties. That led to an assessment by a Wilson trained reading specialist who tutored him over the summer and we placed him in a school known for its reading program. It was a disaster. The school was rigid and kids were told to shout out answers. DS started pulling out his hair.

That led to: an appointment with the child psychologist to handle the anxiety through CBT, a repeat assessment by the reading specialist who said it was time to get a neuropsych eval--which we did, an appointment with the child psychiatrist to discuss meds (which we all decided against initially), an evaluation by a developmental pedi. We had done an OT assessment and some treatment the summer after K but he didn't really need it/it was not a priority when reading tutoring was. Everybody came up with the same diagnoses: dyslexia, anxiety, and then some ADD.

So we switched schools to the school where the Wilson tutor was on staff and it was awesome! In 6 mos, he advanced 1.5 years in his reading level. (We also did reading tutoring the summer after 1st) The school told us we had to put him back a year because he couldn't read. It actually worked out really well. He was in a class with 14 kids and they are all very nice. DS's social age is about 2 years behind anyway!

Overtime, we have: medicated for anxiety, then medicated for ADD, met with the psychologist for CBT--varied from once a week to once a month, worked on CBT workbooks at home with DS, tutored over the summer for math, not tutored over the summer for math (bad idea), and he continues to work with the Wilson tutor. He has the Catholic school equivalent of an IEP but its very loose and we change it to meet his needs. Truly, it is his Wilson tutor that makes everything happen for him. She is amazing. She has years of experience and is a kid whisperer.

We are still facing issues with math and executive functioning. But for a kid we worried would never read--get this. Last year, he got into trouble because he would put down any old answer on his class worksheets so he could get them done fast and get back to....his BOOK! When the teacher was telling us this in a conference, I turned to the reading specialist and said "this is all your fault you know". We all laughed.

Fortunately, DS has always been a kind, compliant kid and teachers really like him. He is starting to feel the effects of hormones though and we are having to ride herd on his attitude. We have had some great teachers and some ok teachers. Teachers who communicated with me and those who don't really. But he is in 5th grade now and doing ok. We will have to keep tutoring in the summer. He will continue to work with the reading specialist. He will probably go to the Catholic high school that is right next door to his K-8 school because it is small and he can still rely on the tutor. I don't know what we are going to do about college. But we will figure that out when we get there. Things change--some get better, some get worse. Some are par for the course with 12 year old boys.

You will get through this. There are many resources available to you--but you have to work hard to find them. There are people who will be angels in disguise. And some who are a PITA. But overall, it will work. I promise!!!! Good luck!

[sste]

Thank you Stantonhyde, that was such a generous post. I feel much less alone in what appears to be a long and winding road!! So glad your DS is doing well and has seen such great progress.

On a lighter note, I will say that although we are still concluding our testing I do think DS has issues with phonemic awareness as well as visual perception underlying his dyslexia. At the neuropsych, I was watching through the one way mirror and the neuropsych takes out a gadget and says to DS, "This is a Dictaphone." And DS replies knowingly, "Oh, you are addicted to your phone."

[StantonHyde]

Thank you Stantonhyde, that was such a generous post. I feel much less alone in what appears to be a long and winding road!! So glad your DS is doing well and has seen such great progress.

On a lighter note, I will say that although we are still concluding our testing I do think DS has issues with phonemic awareness as well as visual perception underlying his dyslexia. At the neuropsych, I was watching through the one way mirror and the neuropsych takes out a gadget and says to DS, "This is a Dictaphone." And DS replies knowingly, "Oh, you are addicted to your phone."

DS went to kindy at the Jewish Community Center (because they had all day kindy which fit better with my work schedule). Then he was being tutored by the woman who works at the Catholic school. She holds up the card for the letter "T" which has a picture of a "top" on it. DS looks at it and says "D", "dreidel". Needless to say, the tutor was a bit confused.......