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acmusicquilt
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Neurological Reorganization
« on: December 23, 2009, 08:44:37 PM »

So today we had our post placement homestudy visit and our homestudy provider told us after observing our 2 year old daughter Caiya, who has been home since late May this year, that she has several developmental GAPS... I was expecting her to say "delays" but instead she said gaps.  This was a scary thing and she has recommended her to be evaluated and treated with "neurological reorganization".  I know... WHAT???? More info here: http://www.neuroreorg.com/  I am a little hurt and don't want to feel like this diminishes my daughter in any way, but I do. I've been crying all afternoon thinking about what this may mean for her in the future and like all moms, I want the best for her and don't want for her to have issues later on (frequently kids with disrupted neuro. issues have reading issues or dyslexia or other behavior issues).  I should also say that Caiya is bright, very attached, extremely loving and has caught up on her language delay and is otherwise a healthy, typical 2 year old. 
Does anyone have any experience with neurological reorganization?  And has anyone had their child evaluated and how did you handle this?
Thanks for any and all replies!
Aimee
Charlotte, NC
DH Cary
DD CAiya FF Day 5.18.09
http://adoptinglittleone.blogspot.com
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2littleroses
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Re: Neurological Reorganization
« Reply #1 on: December 23, 2009, 08:54:35 PM »

This "diagnosis" was made by your home study provider? Is she in anyway qualified to diagnosis?! What has your pediatrician said? I would defiantly have your daughter evaluated but try and hold of on jumping to any conclusions until she is seen by an appropiate profession!
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scbusf
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Re: Neurological Reorganization
« Reply #2 on: December 23, 2009, 09:01:22 PM »

This "diagnosis" was made by your home study provider? Is she in anyway qualified to diagnosis?! What has your pediatrician said? I would defiantly have your daughter evaluated but try and hold of on jumping to any conclusions until she is seen by an appropiate profession!

I was about to post the exact same thing.

Call Early Intervention in your public school district and get a free evaluation done.  The evaluations are done by teachers and therapists.  If she qualifies for therapy, it will be free.
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tomato3
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Re: Neurological Reorganization
« Reply #3 on: December 23, 2009, 09:22:48 PM »

I recently read a blog about this issue.  I found it from a link on No Hands But Ours.  Go to  http://www.nohandsbutours.com/  click on the blog, and scroll down to December 16, 2009, Whatever Wednesday.  The link is "Pondering the Pons" from Privyet Mei Mei.  There are other posts about this topic on the Privyet blog too. 

And I agree with the other posters that you need to have some more evaluations done, but it is good you are looking for more information.  Best wishes!
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kms
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Re: Neurological Reorganization
« Reply #4 on: December 24, 2009, 12:59:59 AM »



No idea what that is. My SW did one better and question a result of his bloodwork I'm not remember what actually, it wasn't one of the big things, some value was higher than she expected on the more broken down portion of the general lab. We showed the entire lab paper from doing the Heps, lead screening. My ped's office thought she was a nut when I called to ask.

It's going to take multiple observations and people to make a determination of anything. They just want you to do the eval's cause it's free and some parents don't notice a delay because they see an area where they are ahead of other kids their age so dismiss any concern. Like mine was way ahead gross motor for his age but way behind on speech and fine motor. One of the therapists told me how common that is, people surprised kids qualify since they are ahead in area, why would the other area need so much help? She also may want you to know ahead about some of the treatments that her clients have recently provided for their kids so you can look up, have heard before mentioned by someone actually qualified. Mine went on about how most her other families did the bottle longer and didn't switch to the sippy. If we didn't switch over to our ped and kept the IA doctor that did our eval longer, he'd still be on a bottle... Just write on the form he is in EI, is drinking from a sippy, gaining weight, had a fever once and is eating from more than 2 food groups, likes milk above all else to drink and he sleeps through the night. Please. Everything else is just small talk. He's thriving and we are seeing to it he sees therapists, doctors, etc...

It bugged me DS wasn't caught up at 6 months, then again when he aged out. I called EI right away (DH took off work to sit in on many team meetings and some sessions), I stayed home with him, he came home young at just over a year, no medical issues and even excellent head shape so we assumed he didn't spend every moment in one position in a crib while in China. Yet I wondered what could we have done? We felt he had gotten over so much. Using a spoon, repeating phrases clearly, he stopped throwing things the second he became frustrated. Can do a mean puzzle. Is fairly social. Shows concern for kids when they are crying or fall down. Can build blocks way higher than they observed and was glad they noticed by the first parent/teacher meeting he could build more blocks than they first thought before they crash to the floor. I thought a speech delay for several years, simple pull out service I bring him to school once/twice a week for therapy. But no, he needed multiple services so preschool it is.

Every now and then something bugs me. The feeling you have now will return from time to time when you least expect it. I made the mistake of trying a new kids activity place for the summer he wasn't getting EI and not in school yet and I told them about the sensory for our free try and they just treated us awful and he was actually doing fine the brief time there; wouldn't have been noticed had I not opened my mouth. I just felt I should since he was technically going to be there on his own with me observing from another part of the buiding. I should have talked more specificially with other parents nearby and even the EI therapists who were just finishing up with about specific places for activities and not generic activity. Like a gymboree class is more appropriate than a language stars cause of the expectation of sitting in a circle is more required of LS. Actually at the end of our gymboree time he was the only kid sitting for the one story on the mat and that's not his strength skill. (with my help) But one story is not a LS class. Unless they have a basketball net and balls in the room he play every 5 mintutes or so. Laugh

We had 2-3 therapists for almost 2 years and at different eval's he'd perform differently. The OT evaluations gosh he did every activty she brought no questions, no rebellion, no frustration but the speech and developmental therapist who came regularly saw sensory issues 3 weeks out of 4. She came every 3 months and she never saw him in the extreme. She saw him do something out of her bag with hardly suggesting it and doing an activity of his choosing for ore than 15 minutes without let up. It was pulling teeth with the others to do an activity for 2 minutes most weeks. He kept wanting to do the next thing or his own thing.

I visited for the class party a few days ago. He was the only child wearing a weighted vest (sigh) for circle time which in September we were told he didn't actually need so far, so odd time to find out. We knew about them and had limited success in EI with. They weren't doing anything odd and we checked off that they were fine before school year started so they could do whenever they felt like it. His preschool class has kids with CP, down syndrome, sensory and developmental delays. I spent the day and was amazed at how different all the kids were. How does the teacher manage with so many different abilities in the room? 6 boys and 1 girl. 1 child was completely dependent on an upright support or chair, 3 boys were very able motorwise and 3 kids were struggling with balance and climbing. No wonder there is much turnover in special ed. 3 kids are very aware of each other and interactive and the others quite shy still socially. I wonder how long he'll need to be in a special class. I wonder if I want him in a regular not so forgiving class? I think what gets me is the lack of choice I thought I'd have before we adopted. We were prepared to just put him in preschool at 5 since a June b-day and then first grade at 6. But we just can't withhold services. Services they want to provide in the regular preschool class and I certainly don't feel the need to fight them to make them a pull out servie, but rather trust them on their plan for service. I'm not the expert. I also thought in addition to not doing preschool until kdg age we could also have been able to choose homeschooling or parochial or public school. But really only public school has the team to meet all his needs right now. And they are doing a great job.

But still... Goodness he knows his letters two years before I learned mine! It doesn't seem fair he is still behind in so much. How could he manage to do so many skills ahead of schedule and be so behind with others? How can he have issues that get in the way of learning and growing and yet manage to do so well with some things?

Kristine
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luckymama2two
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Re: Neurological Reorganization
« Reply #5 on: December 24, 2009, 08:51:39 AM »

Can you elaborate on the "gaps"?  Perhaps some of us AP's have experienced similar issues with our children and can put your mind at ease.

One gap our DD#1 had was speech.  She was adopted at 12 months old and after she learned some English words, rather quickly I might add, she stopped speaking almost altogether until she was around two.  Turns out she was just taking it all in and once she began speaking again, it was in short sentences.  So while she had a "gap" it was short-lived and she ended up being ahead of her same-age peers in that area. 
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jelloanyone?
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Re: Neurological Reorganization
« Reply #6 on: December 24, 2009, 09:38:59 AM »

my boys have some gaps....like they can't do a shape sorter for the life of them unless you specifically show them which hole and then they will work their hardest to get that shape in,

but... they can put their own socks on (which I've been told is way early), can take off pretty much all their clothes and if they clothing is loose enough can put on shirts and almost pants (pull them up but can't get them over their bums yet).

and their speech is behind, but slowly coming along. 

We came home in May also  and they will be 2 at the end of next month. 

have you had any evals done?

we did and they qualified for speech and a thing called directed play.....which I didn't get - they follow directions amazingly! (we'll be giving this therapy up at the end of this 6 month period....I figured give it a shot to see what its all about, but I don't really see any benefit besides the women bringing them different toys to play w/ for an hour Laugh and helping me keep them entertained one day a week Laugh)

I was surprised that they didn't qualify for something different as at the time they were barely walking and their fine motor skills are behind a bit too.  but the walking caught up and moved to running and stair climbing super fast so not an issue any longer.

please don't let her worry you too much, let someone trully qualified make that evaluation. Its nice that she's looking out for your family, but still I think it odd that she would use such terms right off.
jello
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In4LongHaul
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Re: Neurological Reorganization
« Reply #7 on: December 24, 2009, 01:45:07 PM »

Wow, wonder how your SW knew about neuro-reorg (NR). Believe me, this does not dminish your dd in anyway. And "gaps" is the same as "delays". I am surprised she suggested this versus PT, OT, etc...  Seems odd to jump to this unless she has personally used it (and that may be why she brought it up) since it is so intensive and insurances generally do not cover it.  I would interpret her thoughts and statements like this: Your dd has some delays and now is the primetime to work on those. There are many therapies and treatments to help with this and one is NR (which is amazing in theory and anecdotal practice).  However, there are many other conventional therapies available to you.  Basically, there are some delays that could benefit from a professional evaluation and possibly therapuetic intervention.

Here is our expereince with NR and what I know about it:

Our dd was evaluated for NR last spring related to some neuro-motor dysfunction and anxious attachment issues.  However, most people would not even pick up on the fact that our dd had any issues other then she looks very uncoordinated at times, especially when tired or sick,  bcs she compensates so well for the things she is unable to do physically:-). There are only about 4 places in the US that offer this evaluation and training for parents.  One is in Maine, two are out of Washington - though those 2 travel (one goes to Atlanta, GA regularly) and one in FL. Anyway, the evaluation was fascinating and we were given a "home program" for our dd to do every day that takes about an hour. It is intensive and very time consuming. Its very hard work for the child, demanding, and takes a parent a lot of patience and willingness to do lots of motivational work. The NR practitioners counsel you on the commitment and time involved before you do the eval.

The concept of NR is really very fascinating and makes total sense, BUT it is not recognized by insurance yet and we could not get reimbursement.  I think insurance considers it experimental and they are now doing studies on its effectiveness, but not enough have been done to convince insurances to cover it yet. Also, the practitioners are not medical doctors and they are working on an accreditation process, but it is not in place yet. It would be very helpful for them to be able to get some neurologists behind their effort, but bcs so few practitioners exist, it has not really grabbed hold yet.

The NR program was originally developed and used to treat stroke victims. Once they realized the tremendous benefits it offered these patients to rewire pathways in the brain so that they could again be able to do the daily activities of living, they realized that the benefits would be so much more effective for young developing brains who are actually in a period of rapid growth and are primed for wiring (versus an older brain of an adult that is no longer growing as rapid). It really reminds me of a combination therapy for OT, PT and sensory integration, but starts at the beginning with your child redoing or doing for the first time very early developmental stages (like creeping and crawling) in addition to other work and then progressing naturally through the stages of physical development, which can also help with emotional development, that are often missed by children who lived in orphanages.  It is amazing how important these developmental stages are to brain growth and development.

Anyway, we flew to Atlanta from the DC Metro area to get her evaluated. The practitioner did a 3 hour evaluation of our dd and her abilities.  It was amazing.  They developed an individual program designed specifically for our dd using exercises that range from being for the purposes of having her redo the "early work" she missed, rewiring her brain, exposing her to sensory stimuli slowly and strengthening her body.

Unfortunately, due to some very severe emotional issues with our son we have been struggling to do the program bcs of its intensive nature.  It needs to be done everyday and we can't make that commitment right now so we have to take a break. It is not fair to our dd that we can not do this to help her, but she really needs the cuddle time and emotional availability of me right now in the middle of this storm we are weathering versus this program. Its like a hierarchy of needs.

With that being said, the parents that I know who have been able to do the program are usually doing it for emotional reasons and attachment issues for their children and usually after a long line of conventional treatments and therapies. Though this is only one benefit of the program.  The majority of moms that I know who have been using NR are very pleased with the results, but it is a very long and intensive commitment regardless of the reason you have chosen to do the program (physical or emotional).  We pursued it for both emotional and physical benefits. Here is a listserv that talks about NR, it may be helpful to join to find out more about it and ask questions of BTDT parents.  Also, 3 of the 4 NR practitioners are on the that board (2 moderate it) and answer questions about research, individual issues about a child, etc... http://health.groups.yahoo.com/group/NEUROnetwork/

I am a huge skeptic by nature and even as we were flying out for the eval I felt like we were chasing the latest snake oil for our dd. My family is very medical and study based when it comes to medical issues, so this was way out of character for me to pursue (and expensive). Our dd had been in PT and OT prior to us pursuing this but had plateaued in her improvement. I just felt like I wanted to try everything while her "window of development" was at it most maleable.  Thankfully areas of the human brain continue to grow until a child is 25, so we still have time to do this program - its just the brain begins to slow down its rapid growth as a child ages and it takes longer. I think the only true "window" that I am aware of is for sight and speech development which closes very young. I know less about vision, but speech is truly difficult to alter after about 5 or 6  (some sources say 3 years old is the end of the window for speech and this is true for the most rapid growth, but I can say from personal experience that my son never heard a sound or word until he was 3 and his language and speech are rapidly progressing).

I still believe that this will have a positive effect on our dd when we can commit to the program and we do plan to figure out how to balance everything in our lives and move forward in the coming months.  But we made this decision after a few years of PT, OT, visits to developmental peds, a geneticist who specializes in hypotonia, and a neurologist - not as our first line of treatment.

If you have concerns, I would pursue an eval through your EI program.  We began there and it was an okay start, but we ended up going for private evals for PT, OT and speech and then private services for each in addition to the services offered by EI bcs either they would not offer us the therapy our dd needed, not enough to make an impact or not the right kind. Also, other then writing referrals our dd's ped was not helpful in identifying or taking seriously our dd's physical issues (the ped and EI BOTH totally missed her significant hearing loss  and only after my intense insistence did they agree to an audiological exam). We only pursued NR after our dd stopped showing progress, particularly in PT.

Hope something in there is helpful.
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Bunnygirl
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Re: Neurological Reorganization
« Reply #8 on: December 24, 2009, 06:28:19 PM »

Nothing against the EI evaluators but if you want a really thorough evaluation done you might want to have one done privately as well.  I would contact your local hospital and make an appointment with a neuropsychologist who specializes in children.  Also, as I think many others have already posted, the sw who made this comment is NOT a qualified neuro-anything so I would not put that much faith in anything she says!
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acmusicquilt
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Re: Neurological Reorganization
« Reply #9 on: December 24, 2009, 08:20:40 PM »

Thanks, everyone, for your input/comments/experiences/advice.  We are going to contact EI specialists in our area and try to get something more definitive from qualified specialists; our homestudy provider (not a SW) has trained under Emily J. who is one of the premier specialists in neurological reorganization and has 2 children (also adopted from China) who are going through NR currently, so she spoke from both perspectives.
Some of you asked why she had mentioned and/or encouraged us to seek NR and here's what she saw:  Caiya doesn't fluidly crawl.  She also noticed that Caiya has "skips" in her eye tracking both up and down and side to side.  She also observed that Caiya has issues with her eyes both converging and diverging when objects are brought into close view and away from her.  She also has a high-pain threshold, which represents a sensory issue. None of these are issues in and of themselves, but they represent problems with her neurological development that could show up later as reading issues (ie. dyslexia or other reading/processing issues), learning disabilities or other issues.   She did observe that Caiya is wonderfully attached, very loving (in fact, she gave me about 30 spontaneous unasked-for kisses today) and that she is intelligent, has good language skills, well-behaved, and clearly attached to both Mom and Dad. 
Thanks again for all your well-wishes and encouragement.  I'd love to say love and activities and enrichrichment opportunities can "fix" these issues, but I think they are a bit beyond me.
Blessings and Merry Christmas!
Aimee
http://adoptinglittleone.blogspot.com
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Sun9Shine
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Re: Neurological Reorganization
« Reply #10 on: December 26, 2009, 12:17:51 AM »

Quote
Nothing against the EI evaluators but if you want a really thorough evaluation done you might want to have one done privately as well.

I agree...totally.

Our DD is 25 mo. old and we started early on speech evals., just in case (and on a hunch from our ped. that our DD might be speech delayed).  We first had her evaluated by a private therapist.  Then we had her evaluated by EI, and EI gave her a much different score (more favorable).

We have two different therapists from EI (and we also have a private therapist) working with our DD on her speech.  The two therapists from EI are very young, right out of school.  One cancels every other session she has scheduled with our DD, and always at the very last minute.  They are both very nice, and the service is free so I can't complain, but I wouldn't trust any diagnoses they make.  I believe the private evaluation that we had done in the beginning was the most accurate and I believe the private therapy is helping our DD.  This is just our personal experience and others may have had much better experiences with EI. 
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kms
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Re: Neurological Reorganization
« Reply #11 on: December 26, 2009, 11:31:52 AM »

Quote
Nothing against the EI evaluators but if you want a really thorough evaluation done you might want to have one done privately as well.

I agree...totally.

Our DD is 25 mo. old and we started early on speech evals., just in case (and on a hunch from our ped. that our DD might be speech delayed).  We first had her evaluated by a private therapist.  Then we had her evaluated by EI, and EI gave her a much different score (more favorable).

We have two different therapists from EI (and we also have a private therapist) working with our DD on her speech.  The two therapists from EI are very young, right out of school.  One cancels every other session she has scheduled with our DD, and always at the very last minute.  They are both very nice, and the service is free so I can't complain, but I wouldn't trust any diagnoses they make.  I believe the private evaluation that we had done in the beginning was the most accurate and I believe the private therapy is helping our DD.  This is just our personal experience and others may have had much better experiences with EI. 

EI isn't free. The evaluation is free. There is a monthly fee based on income and they also will try to bill insurance where applicable. Looking good on paper which most do to adopt also means you financially look good on paper and there will be a fee. Much less than what it really costs to have someone or many come into your weekly of course.

Kristine
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ChinaBoundfor#2
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Re: Neurological Reorganization
« Reply #12 on: December 26, 2009, 12:19:20 PM »



EI isn't free. The evaluation is free. There is a monthly fee based on income and they also will try to bill insurance where applicable. [/quote]

In some places it is free.  I live in California and both the eval and ongoing EI was absolutely free.  My son received 9 hours of center based early intervention "preschool" and two hours of speech per week.  (We were actually offered  OT as well but I had to decline due to scheduling issues.)  I never paid as much as a dime.  While I certainly am not going to complain about free services, the fact that I was not asked to pay anything seems a little ridiculous considering the state's budget issues.

Now that we have aged out (my DS is 3.5) and I am paying for speech therapy privately, I'm certainly missing EI!
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In4LongHaul
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Re: Neurological Reorganization
« Reply #13 on: December 26, 2009, 01:34:31 PM »

Three things I have learned about EI over the last several years - the quality, willingness to actually offer services, and cost vary by location - even within the same state (one county can be profoundly better then another).  EI is free for us, but they are stingy with offering services even when an issue is obvious and they did not offer the type of services my children needed so we private paid for PT and OT for years and are still private paying for speech for both.

One county over and the services would have been vastly different and more appropriate for my children.  Twenty miles north and across the state line and everything to do with their hearing services all the way to the the hearing aids, specialized speech therapy, and cochlear implants plus surgery would have and still would be paid at 100% by the state - not one dime out of our pocket. Too bad we can't sell this darn house!!!
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uumom
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Re: Neurological Reorganization
« Reply #14 on: December 26, 2009, 01:53:51 PM »

Has your DD been evaluated by a neurologist? That would be my next step if I were in your shoes.

Your SWs observations point to the need for further evaluation, which (IMHO) should be done by a pediatric neurologist. Also, have you run your concerns by your pediatrician?

UUMom

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CH
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Re: Neurological Reorganization
« Reply #15 on: December 26, 2009, 03:00:34 PM »

None of these are issues in and of themselves, but they represent problems with her neurological development that could show up later as reading issues (ie. dyslexia or other reading/processing issues), learning disabilities or other issues.   She did observe that Caiya is wonderfully attached, very loving (in fact, she gave me about 30 spontaneous unasked-for kisses today) and that she is intelligent, has good language skills, well-behaved, and clearly attached to both Mom and Dad. 
I'm seriously impressed by your homestudy provider!!! Our homestudy provider wasn't even that up to date on attachment stuff, and she was a social worker for my country's equivalence of CPS!

Did your daughter grow up in an SWI or was she in foster care? If she was in an SWI then neurological delays and well... true gaps can more or less be expected (in my opinion). They grow up in a very sensory deprived environment, so they haven't gotten the proper stimuli and sensory input to develop their neurological pathways in the way it should.

Just one word of advice... if you get your daughter evaluated, try to get somebody that has some training in sensory issues. Our occupational therapist wasn't, but she had us fill in an evaluation form, and based only on that she wrote in our daughter's papers that she hasn't any sensory issues. Which to us was  and  as we had been surprised in filling in that form just how much fitted our daughter and thought that at least an evaluation would be in order (we had from the start suspected some sensory issues, but nothing had really been big red flags, just small issues). But noooooo... and that line in her papers closed a lot of doors for us as we tried unsuccessfully to get her an evaluation, and finally did it privately (note, I'm not from the US).
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hann23
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Re: Neurological Reorganization
« Reply #16 on: December 28, 2009, 06:14:21 PM »

ANy thoughts on starting with a pediatric optamologist to make sure there isn't something physical going on with the eyes?  I would do this in addition to the neurologist.  Having all these evals in place before EI can help get things moving too?

We have a fantastic pediatric optamologist, he can pick things out of the air.  But he's old and not into sensory issues. 

EI is free here, I had no idea folks charge for it in other states.  Though they did ask for my sons MA card.

I also wanted to say it's very very hard to hear that your child has problems.  It's gut wrenching.  I wanted to give you a 

Good luck!

Hann23
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hann23
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Re: Neurological Reorganization
« Reply #17 on: December 28, 2009, 09:32:20 PM »

Apologies for my fragmented post.  DS2 was in my lap and grabbing my neck as I typed.   My recommendation is to have her checked out physically first before moving into all these evaluations.  You may have already done this.  Early intervention will often ask for a doctor's evaluation.  If you have one completed, the process may move a little more quickly.

I also remembered that there is a type of doctor called a developmental pediatrician.  I am not sure that you daughter needs someone like that but I wanted to let you know. 

Hann23
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