[blindkid] our introduction

Sharisse Roberts sroberts at newvisionfl.org
Mon Oct 15 15:31:56 UTC 2012


Hi Tuesday,

First off, you are a great mom and we all support you during your efforts
to find out what is going on with your son. Everybody has given you great
ideas (second opinion, different kinds of doctors to see, etc.) that you
can pursue  My suggestion is to contact the Cincinnati Association for the
Blind (CABVI) which is a FANTASTIC organization for the blind and visually
impaired in your area. They have a children's program and could be a
wonderful resource for you to help you find the best doctors/specialists in
your area or give you other ideas of how to proceed; you may also be able
to meet other families in your area dealing with the same
frustrations/concerns/issues. Also they may be able to refer you to the
local blind services organization in your area (in fl, we have Division of
Blind Services) and they may also be able to help you find resources too,
especially since your doctor has stated that he is "legally blind". Also
your school system should have a Teacher of the Visually Impaired (help
with his visual tasks) and a Orientation & Mobility Specialist (help with
his bumping and tripping, help him to be more comfortable and confident
when moving around, learn to use a cane) who should be brought in to start
getting vision services on his IEP. You are his best advocate to get the
ball moving with services in the school system (as you already know very
well) regardless of his actual diagnosis.

As for your child being too young for RP, I would just like to say that I
have met many children/young teens diagnosed with RP so i wouldn't rule it
out based on age. Also behavioral issues can arise because of the lack of
visual information he is getting. It can be very frustrating for a child to
not be able to do what other kids are doing, have his vision
changing/fluctuating daily or to have people around him having certain
expectations of him when they don't know he isn't seeing like everyone
else. Plus he doesn't understand what's going on any better than you do and
that can be frustrating for him.

I hope you get some clarity soon on everything. My thoughts are with you.
Feel free to contact me further if you have any questions.

-Sharisse Roberts
Orientation & Mobility Specialist/Youth Services Coordinator
New Vision for Independence, Leesburg, Florida

On Mon, Oct 8, 2012 at 1:00 PM, <blindkid-request at nfbnet.org> wrote:

> Send blindkid mailing list submissions to
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> than "Re: Contents of blindkid digest..."
>
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> Today's Topics:
>
>    1. our introduction (*2sday*)
>    2. Re: our introduction (Brandy Wojcik)
>    3. Re: our introduction (Penny Duffy)
>    4. Re: Preparing for the PSAT & Pre-ACT - Seeking Insights
>       (Bonnie Lucas)
>    5. Re: our introduction (Doreen Frappier)
>    6. Re: our introduction (Penny Duffy)
>    7. Test Prep (EMMOL at aol.com)
>    8. Re: Test Prep (Arielle Silverman)
>    9. Taking the SAT Braille Test (Brian Hatgelakas)
>   10. Re: Taking the SAT Braille Test (Arielle Silverman)
>   11. Re: our introduction (Julie Yanez)
>   12. Re: Taking the SAT Braille Test (Debby B)
>   13. Re: Taking the SAT Braille Test (Doreen Frappier)
>   14. Re: Test Prep (melissa R green)
>   15. Re: Taking the SAT Braille Test (melissa R green)
>
>
> ----------------------------------------------------------------------
>
> Message: 1
> Date: Sun, 7 Oct 2012 12:11:08 -0700 (PDT)
> From: *2sday* <tuesday0728 at yahoo.com>
> To: "blindkid at nfbnet.org" <blindkid at nfbnet.org>
> Subject: [blindkid] our introduction
> Message-ID:
>         <1349637068.11574.YahooMailNeo at web124901.mail.ne1.yahoo.com>
> Content-Type: text/plain; charset=iso-8859-1
>
> Hello all ...?
>
> ? ?My name is Tuesday and I am from Cincinnati,
> Ohio. I am 30 years old and have four amazing children. Joey (7), Carson
> (5),
> Landon (4), Summer (2) These little people are my world! Our oldest Joey
> has
> always been hyper and?struggled?socially and in school. He was 4 when he
> started
> preschool and mostly just had behavior issues stemming from him being so
> hyper.
> Kindergarten was a major struggle, Joey was behind and we noticed that he
> couldn't see all that well. He failed his school eye exams so we went to
> the
> local eye Dr. which he passed. His vision was fine. It was in Kindergarten
> when
> we started his IEP for behavior and being so behind. Things that we would
> notice
> were Joey doing what seemed like adjusting his eyes. He would widen them
> and
> look to the side. His pupils were also VERY?dilated! My mom would question
> this
> all the time. When we went to the regular eye Dr. we mentioned this but
> nothing
> ever came from it. Kindergarten and 1st grade he was seeing the same
> intervention specialist who was always keeping in contact with me because
> she
> just HAD to know what was going on with Joey. She had been working with
> kids
> with disabilities for 30 years and Joey just caught her attention.1st
> grade was
> challenging. Joey was so behind that he would just cause trouble in class
> and be
> sent to the?principles office a lot. Up to this point we had tried several
> ADHD
> medications for his behavior and attention with not much success.?We were
> also
> going through Cincinnati Childrens Hospital for some?physiological
> testing. I
> had told the?psychiatrist?about Joeys vision and how we hadn't gotten many
> answers. She told me to call Childresns and set up and appointment with
> the?ophthalmologist?there. I did, & it took 7 months of waiting to get in.
> We saw her April 26th, 2012. She said right away that there was some
> issues with
> his retina. His central vision was good so there was nothing that
> prescription
> glasses would do but she wanted us to see a Retina specialist. We saw Dr.
> Sisk
> with the Cincinnati Eye Institute on May 1st 2012.?
>
> This day ... I remember oh so well. After some
> testing we met with Dr. Sisk and this is when he told me that Joey was
> legally
> blind. The way that he said it "Joey will never be able to drive a car or
> fly a
> plane, this will limit a lot of things in life for him" As a mother I
> was?devastated. I broke down. After getting myself back together to listen
> to
> the Dr. we were told that Joey possibly has one of two diseases.?Leber's
> congenital amaurosis?(LCA)?or?Retinitis pigmentosa. We did blood work and
> had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to do
> an ERG as soon as possible but their?machine?was broken and we had to wait
> until the new one came in. waiting for that felt like forever! When we did
> finally go in to do the ERG it wasn't working properly so it felt like we
> had Joey put under for no reason. We did get to talk to the Dr. a little
> better that day and he was very certain that what Joey was dealing with was
> LCA. He had never told us that he was leaning more?towards?LCA so this was
> news to us. so now, we were just waiting for test results to come back.?
>
> Watching Joey we did notice more loss of peripheral vision. Over the
> summer it seemed to get worse. He started tripping over things and holding
> on to me whenever he walked. He did fall a few times and you could tell
> that we was scared. Last week we?received?a call from the Dr. that the
> testing from Carver lab came back. Out of the 14 genes that were tested for
> LCA they were all negative. ?? My initial thought was "WHAT?! you were so
> sure!! you told us it was...." both his father and I were confused. If it's
> not LCA then RP? is it RP??so here we are, back at square one. In the dark
> and no closer to knowing what it is that Joey has. Dr. Sisk?recommended
> that if we could afford it to go through with the phase 2 testing so we
> could see if it is LCA. He said we need to trust him with this. He still
> thinks it's LCA. I asked him why he wasn't leaning more towards RP and he
> said RP is normally in older people. Everything I've read on RP though
> sounds like
>  Joey.??
>
> Joey also had his first seizure in June and another in September. We have
> had an MRI and EEG which both came back normal. Joey's behavior has been so
> bad that no one wants to be around him. We have started with a therapist
> and are scheduled to see the?psychiatrist?in November. He has ADHD, ODD,
> ADD, and is Bi-polar. Atleast that is what they say...
>
> What scares his father and I is, what if it's not LCA or RP and it's
> something else that also includes his behavior and seizures? We had
> discussed Battens disease with Dr. Sisk in the?beginning?and again when he
> heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> am a member of the LCA boards on yahoo and they had reffered me to this
> group. I'm just at a loss as to what to do for my child. I feel helpless.?
>
> Thank you for listening to my long story :)?
>
> Tuesday
>
> ------------------------------
>
> Message: 2
> Date: Sun, 7 Oct 2012 15:39:00 -0400
> From: "Brandy Wojcik" <ballstobooks at gmail.com>
> To: "'*2sday*'" <tuesday0728 at yahoo.com>, "'Blind Kid Mailing List,
>         \(for parents of blind children\)'" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] our introduction
> Message-ID: <002401cda4c3$67634770$3629d650$@com>
> Content-Type: text/plain;       charset="iso-8859-1"
>
> Hello Tuesday. I'm so glad you came on over to this list. There are many
> many helpful people here. Hugs and prayers for peace with the new
> diagnosis.
> A few of us from the LCA list are, but many are new people you haven't
> spoken with.
>
> Bran
>
>
> -----Original Message-----
> From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of *2sday*
> Sent: Sunday, October 07, 2012 3:11 PM
> To: blindkid at nfbnet.org
> Subject: [blindkid] our introduction
>
> Hello all ...?
>
> ? ?My name is Tuesday and I am from Cincinnati, Ohio. I am 30 years old and
> have four amazing children. Joey (7), Carson (5), Landon (4), Summer (2)
> These little people are my world! Our oldest Joey has always been hyper
> and?struggled?socially and in school. He was 4 when he started preschool
> and
> mostly just had behavior issues stemming from him being so hyper.
> Kindergarten was a major struggle, Joey was behind and we noticed that he
> couldn't see all that well. He failed his school eye exams so we went to
> the
> local eye Dr. which he passed. His vision was fine. It was in Kindergarten
> when we started his IEP for behavior and being so behind. Things that we
> would notice were Joey doing what seemed like adjusting his eyes. He would
> widen them and look to the side. His pupils were also VERY?dilated! My mom
> would question this all the time. When we went to the regular eye Dr. we
> mentioned this but nothing ever came from it. Kindergarten and 1st grade he
> was seeing the same intervention specialist who was always keeping in
> contact with me because she just HAD to know what was going on with Joey.
> She had been working with kids with disabilities for 30 years and Joey just
> caught her attention.1st grade was challenging. Joey was so behind that he
> would just cause trouble in class and be sent to the?principles office a
> lot. Up to this point we had tried several ADHD medications for his
> behavior
> and attention with not much success.?We were also going through Cincinnati
> Childrens Hospital for some?physiological testing. I had told
> the?psychiatrist?about Joeys vision and how we hadn't gotten many answers.
> She told me to call Childresns and set up and appointment with
> the?ophthalmologist?there. I did, & it took 7 months of waiting to get in.
> We saw her April 26th, 2012. She said right away that there was some issues
> with his retina. His central vision was good so there was nothing that
> prescription glasses would do but she wanted us to see a Retina specialist.
> We saw Dr. Sisk with the Cincinnati Eye Institute on May 1st 2012.?
>
> This day ... I remember oh so well. After some testing we met with Dr. Sisk
> and this is when he told me that Joey was legally blind. The way that he
> said it "Joey will never be able to drive a car or fly a plane, this will
> limit a lot of things in life for him" As a mother I was?devastated. I
> broke
> down. After getting myself back together to listen to the Dr. we were told
> that Joey possibly has one of two diseases.?Leber's congenital
> amaurosis?(LCA)?or?Retinitis pigmentosa. We did blood work and had samples
> sent to both Carver Labs and igene labs. Dr. Sisk wanted to do an ERG as
> soon as possible but their?machine?was broken and we had to wait until the
> new one came in. waiting for that felt like forever! When we did finally go
> in to do the ERG it wasn't working properly so it felt like we had Joey put
> under for no reason. We did get to talk to the Dr. a little better that day
> and he was very certain that what Joey was dealing with was LCA. He had
> never told us that he was leaning more?towards?LCA so this was news to us.
> so now, we were just waiting for test results to come back.?
>
> Watching Joey we did notice more loss of peripheral vision. Over the summer
> it seemed to get worse. He started tripping over things and holding on to
> me
> whenever he walked. He did fall a few times and you could tell that we was
> scared. Last week we?received?a call from the Dr. that the testing from
> Carver lab came back. Out of the 14 genes that were tested for LCA they
> were
> all negative. ?? My initial thought was "WHAT?! you were so sure!! you told
> us it was...." both his father and I were confused. If it's not LCA then
> RP?
> is it RP??so here we are, back at square one. In the dark and no closer to
> knowing what it is that Joey has. Dr. Sisk?recommended that if we could
> afford it to go through with the phase 2 testing so we could see if it is
> LCA. He said we need to trust him with this. He still thinks it's LCA. I
> asked him why he wasn't leaning more towards RP and he said RP is normally
> in older people. Everything I've read on RP though sounds like  Joey.??
>
> Joey also had his first seizure in June and another in September. We have
> had an MRI and EEG which both came back normal. Joey's behavior has been so
> bad that no one wants to be around him. We have started with a therapist
> and
> are scheduled to see the?psychiatrist?in November. He has ADHD, ODD, ADD,
> and is Bi-polar. Atleast that is what they say...
>
> What scares his father and I is, what if it's not LCA or RP and it's
> something else that also includes his behavior and seizures? We had
> discussed Battens disease with Dr. Sisk in the?beginning?and again when he
> heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> am
> a member of the LCA boards on yahoo and they had reffered me to this group.
> I'm just at a loss as to what to do for my child. I feel helpless.?
>
> Thank you for listening to my long story :)?
>
> Tuesday
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
>
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> om
>
>
>
>
> ------------------------------
>
> Message: 3
> Date: Sun, 7 Oct 2012 17:15:30 -0400
> From: Penny Duffy <pennyduffy at gmail.com>
> To: "Blind Kid Mailing List,    (for parents of blind children)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] our introduction
> Message-ID:
>         <CABb_=
> QfPKrOBZ3OkQeA_CXbCNR3etwLP_Dp9oEz8OaBL8ZBunA at mail.gmail.com>
> Content-Type: text/plain; charset=ISO-8859-1
>
> Hello Tuesday
>
> Welcome.
>
> You sound so frustrated I really just want to hug you.  You sounds like a
> wonderful mother.   I imagine the biggest issue needed to knowing your
> child's official diagnosis is to know the prognosis and if there is a
> treatment.  Sometimes the known can be a lot worse then knowing.
>
> When we didn't know what was going on with my 6 year old daughter it was
> very frustrating the first two vision professionals decided she must be
> faking. The few weeks i spent questioning what my daughter could and
> couldn't see breaks my heart now.
>
> Maybe you should try a go to another pediatric ophthalmologist and get a
> second option?  Not because you don't trust the other doctor but because
> all doctors have a bit of a bias to what they have experienced in the past.
> Doctors discount 'mommy gut' even though sometimes mommy's end up being
> right in the end. I know I was.
>
> My 8 daughter is blind with little to no central vision(but lots
> of peripheral vision) so the reverse of what your son is experiencing.
>
> You have come to a great place and there is lot of people here that want to
> support you and your son.
>
> I don't know if it would be any help to you but my daughter
> was diagnosed two years ago and I wrote a letter to that crazy mom two
> years ago in my last blog post.
>
> http://visionfora.blogspot.com/2012/09/a-letter-to-myself-two-years-ago.html
>
> -Penny
>
>
>
> On Sun, Oct 7, 2012 at 3:11 PM, *2sday* <tuesday0728 at yahoo.com> wrote:
>
> > Hello all ...
> >
> >    My name is Tuesday and I am from Cincinnati,
> > Ohio. I am 30 years old and have four amazing children. Joey (7), Carson
> > (5),
> > Landon (4), Summer (2) These little people are my world! Our oldest Joey
> > has
> > always been hyper and struggled socially and in school. He was 4 when he
> > started
> > preschool and mostly just had behavior issues stemming from him being so
> > hyper.
> > Kindergarten was a major struggle, Joey was behind and we noticed that he
> > couldn't see all that well. He failed his school eye exams so we went to
> > the
> > local eye Dr. which he passed. His vision was fine. It was in
> Kindergarten
> > when
> > we started his IEP for behavior and being so behind. Things that we would
> > notice
> > were Joey doing what seemed like adjusting his eyes. He would widen them
> > and
> > look to the side. His pupils were also VERY dilated! My mom would
> question
> > this
> > all the time. When we went to the regular eye Dr. we mentioned this but
> > nothing
> > ever came from it. Kindergarten and 1st grade he was seeing the same
> > intervention specialist who was always keeping in contact with me because
> > she
> > just HAD to know what was going on with Joey. She had been working with
> > kids
> > with disabilities for 30 years and Joey just caught her attention.1st
> > grade was
> > challenging. Joey was so behind that he would just cause trouble in class
> > and be
> > sent to the principles office a lot. Up to this point we had tried
> several
> > ADHD
> > medications for his behavior and attention with not much success. We were
> > also
> > going through Cincinnati Childrens Hospital for some physiological
> > testing. I
> > had told the psychiatrist about Joeys vision and how we hadn't gotten
> many
> > answers. She told me to call Childresns and set up and appointment with
> > the ophthalmologist there. I did, & it took 7 months of waiting to get
> in.
> > We saw her April 26th, 2012. She said right away that there was some
> > issues with
> > his retina. His central vision was good so there was nothing that
> > prescription
> > glasses would do but she wanted us to see a Retina specialist. We saw Dr.
> > Sisk
> > with the Cincinnati Eye Institute on May 1st 2012.
> >
> > This day ... I remember oh so well. After some
> > testing we met with Dr. Sisk and this is when he told me that Joey was
> > legally
> > blind. The way that he said it "Joey will never be able to drive a car or
> > fly a
> > plane, this will limit a lot of things in life for him" As a mother I
> > was devastated. I broke down. After getting myself back together to
> listen
> > to
> > the Dr. we were told that Joey possibly has one of two diseases. Leber's
> > congenital amaurosis (LCA) or Retinitis pigmentosa. We did blood work and
> > had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to
> do
> > an ERG as soon as possible but their machine was broken and we had to
> wait
> > until the new one came in. waiting for that felt like forever! When we
> did
> > finally go in to do the ERG it wasn't working properly so it felt like we
> > had Joey put under for no reason. We did get to talk to the Dr. a little
> > better that day and he was very certain that what Joey was dealing with
> was
> > LCA. He had never told us that he was leaning more towards LCA so this
> was
> > news to us. so now, we were just waiting for test results to come back.
> >
> > Watching Joey we did notice more loss of peripheral vision. Over the
> > summer it seemed to get worse. He started tripping over things and
> holding
> > on to me whenever he walked. He did fall a few times and you could tell
> > that we was scared. Last week we received a call from the Dr. that the
> > testing from Carver lab came back. Out of the 14 genes that were tested
> for
> > LCA they were all negative. ?? My initial thought was "WHAT?! you were so
> > sure!! you told us it was...." both his father and I were confused. If
> it's
> > not LCA then RP? is it RP? so here we are, back at square one. In the
> dark
> > and no closer to knowing what it is that Joey has. Dr. Sisk recommended
> > that if we could afford it to go through with the phase 2 testing so we
> > could see if it is LCA. He said we need to trust him with this. He still
> > thinks it's LCA. I asked him why he wasn't leaning more towards RP and he
> > said RP is normally in older people. Everything I've read on RP though
> > sounds like
> >  Joey.
> >
> > Joey also had his first seizure in June and another in September. We have
> > had an MRI and EEG which both came back normal. Joey's behavior has been
> so
> > bad that no one wants to be around him. We have started with a therapist
> > and are scheduled to see the psychiatrist in November. He has ADHD, ODD,
> > ADD, and is Bi-polar. Atleast that is what they say...
> >
> > What scares his father and I is, what if it's not LCA or RP and it's
> > something else that also includes his behavior and seizures? We had
> > discussed Battens disease with Dr. Sisk in the beginning and again when
> he
> > heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> > am a member of the LCA boards on yahoo and they had reffered me to this
> > group. I'm just at a loss as to what to do for my child. I feel helpless.
> >
> > Thank you for listening to my long story :)
> >
> > Tuesday
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> >
>
>
>
> --
> --
> --Penny
> ----------
> My Blog - visionfora.blogspot.com
>
> NH Parents of Blind Children http://www.nhpobc.org/
> NHPOBC on facebook   https://www.facebook.com/nhpobc
>
>
> ------------------------------
>
> Message: 4
> Date: Sun, 7 Oct 2012 16:17:58 -0800
> From: "Bonnie Lucas" <lucas.bonnie at gmail.com>
> To: "'Blind Kid Mailing List,   \(for parents of blind children\)'"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Preparing for the PSAT & Pre-ACT - Seeking
>         Insights
> Message-ID: <50721bbb.6457420a.1a40.4bf7 at mx.google.com>
> Content-Type: text/plain;       charset="us-ascii"
>
> Aubrie is also taking it and she got her practice test just the other day.
> I
> did comment that since she has to take the test a few days before the
> others
> and since they have had their practice tests for a while now, that it
> wasn't
> exactly the way it should be but, I guess it could be worse. Unfortunately,
> with all the work she has to-do, I'm not sure how much time she will have
> to
> study anyway.
>
>
>
> From: Barbara.Mathews at sce.com [mailto:Barbara.Mathews at sce.com]
> Sent: Saturday, October 06, 2012 9:24 AM
> To: Blind Kid Mailing List, (for parents of blind children)
> Subject: Re: [blindkid] Preparing for the PSAT & Pre-ACT - Seeking Insights
>
>
>
>         We got old PSAT tests in Braille to use for practice from the
> College Board.
>
>
>
> From:        Carol Castellano <carol_castellano at verizon.net>
> To:        "Blind Kid Mailing List,        \(for parents of blind
> children\)" <blindkid at nfbnet.org>
> Date:        10/06/2012 05:57 AM
> Subject:        Re: [blindkid] Preparing for the PSAT & Pre-ACT - Seeking
> Insights
> Sent by:        "blindkid" <blindkid-bounces at nfbnet.org>
>
>   _____
>
>
>
>
> Hi Eric,
>
> We did the practice materials that the school
> provided orally--not great, but better than
> nothing.  I really wanted Serena to have some
> experience with the format of the test, though.
>
> The last time I contacted the College Board about
> this, they said old PSAT tests are available in
> Braille for practice purposes, so if there's
> still time, maybe you can get ahold of one of those.
>
> Hope this helps,
> Carol
>
> Carol Castellano
> President, Parents of Blind Children-NJ
> Director of Programs
> National Organization of Parents of Blind Children
> 973-377-0976
> carol_castellano at verizon.net
> www.blindchildren.org
> www.nopbc.org
>
> At 07:38 PM 10/5/2012, you wrote:
> >Hi All,
> >My 10th grader Vejas (braille-reader; no vision) will be taking the both
> the
> >PSAT & Pre-ACT in the next 3 weeks - any suggestions on taking the actual
> >test? Any suggestions on how to best study for these? All the kids got a
> >PSAT descriptive booklet - we found a PDF of it on the web. The actual
> >Pretest booklet however seems to only be available in print. Suggestions
> >anyone? Words of experience & wisdom?
> >
> >He did look on Bookshare but he says there were problems with the books
> >
> >Book 1: Cracking the SAT (2013 Edition).
> >Problems: Most, if not all, of the reading comprehension passages are
> >omitted & in some of the multiple choice questions, the choice answers are
> >cut off.
> >
> >Book 2: Cracking the PSAT/Nmsqt (2013 Edition).
> >Problems: The reading comprehension passages seem to have been omitted.
> >
> >Thanks in advance for your time & input.
> >EricV
> >
> >
> >_______________________________________________
> >blindkid mailing list
> >blindkid at nfbnet.org
> > <http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org>
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> >To unsubscribe, change your list options or get
> >your account info for blindkid:
> >
> <
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/blindchildren%40veriz
> on.net>
>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/blindchildren%40verizo
> n.net
>
>
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
>  <http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org>
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
>
> <
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/barbara.mathews%40sce
> .com>
>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/barbara.mathews%40sce.
> com
>
>
>
> ------------------------------
>
> Message: 5
> Date: Sun, 7 Oct 2012 19:42:23 -0500
> From: Doreen Frappier <dcfrappier at yahoo.com>
> To: *2sday* <tuesday0728 at yahoo.com>, "Blind Kid Mailing List,   \(for
>         parents of blind children\)" <blindkid at nfbnet.org>
> Subject: Re: [blindkid] our introduction
> Message-ID: <36005F46-8241-4372-8740-ED7EF31CBD2B at yahoo.com>
> Content-Type: text/plain;       charset=us-ascii
>
> Hi Tuesday,
> I would like to suggest that your child see a neurologist or geneticist.
> It is possible that there is something else going on, and maybe all the
> symptoms combined are a disorder. There are some neurological disorders
> that cause vision loss, some progressive.  Maybe looking at all of the
> symptoms he is experiencing combined might help. We saw a geneticist for
> our vi twins since they had more than one problem. They searched for a
> syndrome, but were unable to come up with anything. I think it's worth a
> shot.
>
> Doreen
> (Mother of legally blind 18 year old twins)
>
> Sent from my iPad
>
> On Oct 7, 2012, at 2:11 PM, *2sday* <tuesday0728 at yahoo.com> wrote:
>
> > Hello all ...
> >
> >    My name is Tuesday and I am from Cincinnati,
> > Ohio. I am 30 years old and have four amazing children. Joey (7), Carson
> (5),
> > Landon (4), Summer (2) These little people are my world! Our oldest Joey
> has
> > always been hyper and struggled socially and in school. He was 4 when he
> started
> > preschool and mostly just had behavior issues stemming from him being so
> hyper.
> > Kindergarten was a major struggle, Joey was behind and we noticed that he
> > couldn't see all that well. He failed his school eye exams so we went to
> the
> > local eye Dr. which he passed. His vision was fine. It was in
> Kindergarten when
> > we started his IEP for behavior and being so behind. Things that we
> would notice
> > were Joey doing what seemed like adjusting his eyes. He would widen them
> and
> > look to the side. His pupils were also VERY dilated! My mom would
> question this
> > all the time. When we went to the regular eye Dr. we mentioned this but
> nothing
> > ever came from it. Kindergarten and 1st grade he was seeing the same
> > intervention specialist who was always keeping in contact with me
> because she
> > just HAD to know what was going on with Joey. She had been working with
> kids
> > with disabilities for 30 years and Joey just caught her attention.1st
> grade was
> > challenging. Joey was so behind that he would just cause trouble in
> class and be
> > sent to the principles office a lot. Up to this point we had tried
> several ADHD
> > medications for his behavior and attention with not much success. We
> were also
> > going through Cincinnati Childrens Hospital for some physiological
> testing. I
> > had told the psychiatrist about Joeys vision and how we hadn't gotten
> many
> > answers. She told me to call Childresns and set up and appointment with
> > the ophthalmologist there. I did, & it took 7 months of waiting to get
> in.
> > We saw her April 26th, 2012. She said right away that there was some
> issues with
> > his retina. His central vision was good so there was nothing that
> prescription
> > glasses would do but she wanted us to see a Retina specialist. We saw
> Dr. Sisk
> > with the Cincinnati Eye Institute on May 1st 2012.
> >
> > This day ... I remember oh so well. After some
> > testing we met with Dr. Sisk and this is when he told me that Joey was
> legally
> > blind. The way that he said it "Joey will never be able to drive a car
> or fly a
> > plane, this will limit a lot of things in life for him" As a mother I
> > was devastated. I broke down. After getting myself back together to
> listen to
> > the Dr. we were told that Joey possibly has one of two diseases. Leber's
> congenital amaurosis (LCA) or Retinitis pigmentosa. We did blood work and
> had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to do
> an ERG as soon as possible but their machine was broken and we had to wait
> until the new one came in. waiting for that felt like forever! When we did
> finally go in to do the ERG it wasn't working properly so it felt like we
> had Joey put under for no reason. We did get to talk to the Dr. a little
> better that day and he was very certain that what Joey was dealing with was
> LCA. He had never told us that he was leaning more towards LCA so this was
> news to us. so now, we were just waiting for test results to come back.
> >
> > Watching Joey we did notice more loss of peripheral vision. Over the
> summer it seemed to get worse. He started tripping over things and holding
> on to me whenever he walked. He did fall a few times and you could tell
> that we was scared. Last week we received a call from the Dr. that the
> testing from Carver lab came back. Out of the 14 genes that were tested for
> LCA they were all negative. ?? My initial thought was "WHAT?! you were so
> sure!! you told us it was...." both his father and I were confused. If it's
> not LCA then RP? is it RP? so here we are, back at square one. In the dark
> and no closer to knowing what it is that Joey has. Dr. Sisk recommended
> that if we could afford it to go through with the phase 2 testing so we
> could see if it is LCA. He said we need to trust him with this. He still
> thinks it's LCA. I asked him why he wasn't leaning more towards RP and he
> said RP is normally in older people. Everything I've read on RP though
> sounds like
> > Joey.
> >
> > Joey also had his first seizure in June and another in September. We
> have had an MRI and EEG which both came back normal. Joey's behavior has
> been so bad that no one wants to be around him. We have started with a
> therapist and are scheduled to see the psychiatrist in November. He has
> ADHD, ODD, ADD, and is Bi-polar. Atleast that is what they say...
> >
> > What scares his father and I is, what if it's not LCA or RP and it's
> something else that also includes his behavior and seizures? We had
> discussed Battens disease with Dr. Sisk in the beginning and again when he
> heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> am a member of the LCA boards on yahoo and they had reffered me to this
> group. I'm just at a loss as to what to do for my child. I feel helpless.
> >
> > Thank you for listening to my long story :)
> >
> > Tuesday
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/dcfrappier%40yahoo.com
>
>
>
> ------------------------------
>
> Message: 6
> Date: Sun, 7 Oct 2012 20:49:38 -0400
> From: Penny Duffy <pennyduffy at gmail.com>
> To: "Blind Kid Mailing List,    (for parents of blind children)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] our introduction
> Message-ID:
>         <CABb_=QcEKuOMNpscAaKvx61VJW-=
> nvt5aALC2VVwn3iMbe_BVQ at mail.gmail.com>
> Content-Type: text/plain; charset=ISO-8859-1
>
> Doreen
>
> Has a great suggestion.
>
> We saw a geneticist for our daughter and that is who diagnosed her and it
> has since (two year later) been our best appointment.  We
> see neuro-ophthalmologist for my daughter and to some of the best in the
> country and they are rarely that helpful.  We loved our geneticist
> appointments. What caused my daughter's blindness is very rare for her age.
> -Penny
> On Sun, Oct 7, 2012 at 8:42 PM, Doreen Frappier <dcfrappier at yahoo.com
> >wrote:
>
> > Hi Tuesday,
> > I would like to suggest that your child see a neurologist or geneticist.
> > It is possible that there is something else going on, and maybe all the
> > symptoms combined are a disorder. There are some neurological disorders
> > that cause vision loss, some progressive.  Maybe looking at all of the
> > symptoms he is experiencing combined might help. We saw a geneticist for
> > our vi twins since they had more than one problem. They searched for a
> > syndrome, but were unable to come up with anything. I think it's worth a
> > shot.
> >
> > Doreen
> > (Mother of legally blind 18 year old twins)
> >
> > Sent from my iPad
> >
> > On Oct 7, 2012, at 2:11 PM, *2sday* <tuesday0728 at yahoo.com> wrote:
> >
> > > Hello all ...
> > >
> > >    My name is Tuesday and I am from Cincinnati,
> > > Ohio. I am 30 years old and have four amazing children. Joey (7),
> Carson
> > (5),
> > > Landon (4), Summer (2) These little people are my world! Our oldest
> Joey
> > has
> > > always been hyper and struggled socially and in school. He was 4 when
> he
> > started
> > > preschool and mostly just had behavior issues stemming from him being
> so
> > hyper.
> > > Kindergarten was a major struggle, Joey was behind and we noticed that
> he
> > > couldn't see all that well. He failed his school eye exams so we went
> to
> > the
> > > local eye Dr. which he passed. His vision was fine. It was in
> > Kindergarten when
> > > we started his IEP for behavior and being so behind. Things that we
> > would notice
> > > were Joey doing what seemed like adjusting his eyes. He would widen
> them
> > and
> > > look to the side. His pupils were also VERY dilated! My mom would
> > question this
> > > all the time. When we went to the regular eye Dr. we mentioned this but
> > nothing
> > > ever came from it. Kindergarten and 1st grade he was seeing the same
> > > intervention specialist who was always keeping in contact with me
> > because she
> > > just HAD to know what was going on with Joey. She had been working with
> > kids
> > > with disabilities for 30 years and Joey just caught her attention.1st
> > grade was
> > > challenging. Joey was so behind that he would just cause trouble in
> > class and be
> > > sent to the principles office a lot. Up to this point we had tried
> > several ADHD
> > > medications for his behavior and attention with not much success. We
> > were also
> > > going through Cincinnati Childrens Hospital for some physiological
> > testing. I
> > > had told the psychiatrist about Joeys vision and how we hadn't gotten
> > many
> > > answers. She told me to call Childresns and set up and appointment with
> > > the ophthalmologist there. I did, & it took 7 months of waiting to get
> > in.
> > > We saw her April 26th, 2012. She said right away that there was some
> > issues with
> > > his retina. His central vision was good so there was nothing that
> > prescription
> > > glasses would do but she wanted us to see a Retina specialist. We saw
> > Dr. Sisk
> > > with the Cincinnati Eye Institute on May 1st 2012.
> > >
> > > This day ... I remember oh so well. After some
> > > testing we met with Dr. Sisk and this is when he told me that Joey was
> > legally
> > > blind. The way that he said it "Joey will never be able to drive a car
> > or fly a
> > > plane, this will limit a lot of things in life for him" As a mother I
> > > was devastated. I broke down. After getting myself back together to
> > listen to
> > > the Dr. we were told that Joey possibly has one of two diseases.
> Leber's
> > congenital amaurosis (LCA) or Retinitis pigmentosa. We did blood work and
> > had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to
> do
> > an ERG as soon as possible but their machine was broken and we had to
> wait
> > until the new one came in. waiting for that felt like forever! When we
> did
> > finally go in to do the ERG it wasn't working properly so it felt like we
> > had Joey put under for no reason. We did get to talk to the Dr. a little
> > better that day and he was very certain that what Joey was dealing with
> was
> > LCA. He had never told us that he was leaning more towards LCA so this
> was
> > news to us. so now, we were just waiting for test results to come back.
> > >
> > > Watching Joey we did notice more loss of peripheral vision. Over the
> > summer it seemed to get worse. He started tripping over things and
> holding
> > on to me whenever he walked. He did fall a few times and you could tell
> > that we was scared. Last week we received a call from the Dr. that the
> > testing from Carver lab came back. Out of the 14 genes that were tested
> for
> > LCA they were all negative. ?? My initial thought was "WHAT?! you were so
> > sure!! you told us it was...." both his father and I were confused. If
> it's
> > not LCA then RP? is it RP? so here we are, back at square one. In the
> dark
> > and no closer to knowing what it is that Joey has. Dr. Sisk recommended
> > that if we could afford it to go through with the phase 2 testing so we
> > could see if it is LCA. He said we need to trust him with this. He still
> > thinks it's LCA. I asked him why he wasn't leaning more towards RP and he
> > said RP is normally in older people. Everything I've read on RP though
> > sounds like
> > > Joey.
> > >
> > > Joey also had his first seizure in June and another in September. We
> > have had an MRI and EEG which both came back normal. Joey's behavior has
> > been so bad that no one wants to be around him. We have started with a
> > therapist and are scheduled to see the psychiatrist in November. He has
> > ADHD, ODD, ADD, and is Bi-polar. Atleast that is what they say...
> > >
> > > What scares his father and I is, what if it's not LCA or RP and it's
> > something else that also includes his behavior and seizures? We had
> > discussed Battens disease with Dr. Sisk in the beginning and again when
> he
> > heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> > am a member of the LCA boards on yahoo and they had reffered me to this
> > group. I'm just at a loss as to what to do for my child. I feel helpless.
> > >
> > > Thank you for listening to my long story :)
> > >
> > > Tuesday
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > blindkid:
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/dcfrappier%40yahoo.com
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> >
>
>
>
> --
> --
> --Penny
> ----------
> My Blog - visionfora.blogspot.com
>
> NH Parents of Blind Children http://www.nhpobc.org/
> NHPOBC on facebook   https://www.facebook.com/nhpobc
>
>
> ------------------------------
>
> Message: 7
> Date: Sun, 7 Oct 2012 21:00:40 -0400 (EDT)
> From: EMMOL at aol.com
> To: blindkid at nfbnet.org
> Subject: [blindkid] Test Prep
> Message-ID: <1acc5.693035c3.3da37fb8 at aol.com>
> Content-Type: text/plain; charset="US-ASCII"
>
>
> Dr. V,
> After registering for the tests and creating an account, my son,  Patrick,
> tried the online sample questions provided by ETS. Not always easy  to do
> with JAWS, but that was a few years back. Then ETS would send prep
>  materials
> in Braille to my son's guidance counselor,  who happened to be  the testing
> coordinator in our high school. I believe they were copies of old  tests.
> They also sent a Braille booklet of Nemeth symbols that would be used in
>  the
> math section of the SAT.
>
> The PSAT in Braille was only offered on the Wednesday before the PSAT
> Saturday date. A challenge to find a quiet testing environment on a normal
>  high
> school day with a couple of thousand teenagers moving around the  building
> following their usual schedules, not quite like the totally quiet  building
> the other kids have on a Saturday morning. Also, when testing on a
> Wednesday, one misses the regularly scheduled classes and is of course
>  responsible
> for presented information. Looked into this and it is just the way  it is
> done, throughout the country, I was told. I decided this was one of those
> "Pick and choose your battles" situations.
> Guessing you may have a couple of years before dealing with the AP  final
> exam testing. That was another whole situation and a battle I chose to
> fight.
> Eileen Molloy
>
> Date: Fri, 05 Oct 2012 16:38:43 -0700
> From: DrV  <icdx at earthlink.net>
> To: "Blind Kid Mailing List, (for parents of blind  children)"
> <blindkid at nfbnet.org>
> Subject: [blindkid]  Preparing for the PSAT & Pre-ACT - Seeking
> Insights
> Message-ID:  <CC94BD93.B459%icdx at earthlink.net>
> Content-Type: text/plain;   charset="ISO-8859-1"
>
> Hi All,
> My 10th grader Vejas  (braille-reader; no vision) will be taking the both
> the
> PSAT & Pre-ACT in  the next 3 weeks ? any suggestions on taking the actual
> test? Any suggestions  on how to best study for these? All the kids got a
> PSAT descriptive booklet ?  we found a PDF of it on the web. The actual
> Pretest booklet however seems to  only be available in print. Suggestions
> anyone? Words of experience &  wisdom?
>
> He did look on Bookshare but he says there were problems with the  books
>
> Book 1: Cracking the SAT (2013 Edition).
> Problems: Most, if not  all, of the reading comprehension passages are
> omitted & in some of the  multiple choice questions, the choice answers are
> cut off.
>
> Book 2:  Cracking the PSAT/Nmsqt (2013 Edition).
> Problems: The reading comprehension  passages seem to have been omitted.
>
> Thanks in advance for your time &  input.
> EricV
>
>
>
>
>
>
>
> ------------------------------
>
> Message: 8
> Date: Sun, 7 Oct 2012 19:43:50 -0600
> From: Arielle Silverman <arielle71 at gmail.com>
> To: "Blind Kid Mailing List,    (for parents of blind children)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Test Prep
> Message-ID:
>         <
> CALAYQJAzpp+a_RRu9rCN12spMBU8ZXRpQx9YMScohtia17eJSA at mail.gmail.com>
> Content-Type: text/plain; charset=ISO-8859-1
>
> Hi Eileen,
> That's very odd that Braille students throughout the country must take
> the test on a Wednesday. I took the test in 2002, and I took it on the
> same Saturday as the other students. The only difference was that I
> took the test in the VI classroom with my TVI as proctor and of course
> used a Braille test. I have some trouble believing that everyone who
> uses Braille would have to test at the same time and at a different
> time as the other students. Have others experienced this?
> Also, I'm just curious, what problems did Patrick have with the AP
> test? Are AP scores still being released late for blind students? I
> know back in 2006 the NFB was taking this issue on.
> Arielle
>
> On 10/7/12, EMMOL at aol.com <EMMOL at aol.com> wrote:
> >
> > Dr. V,
> > After registering for the tests and creating an account, my son,
>  Patrick,
> > tried the online sample questions provided by ETS. Not always easy  to do
> > with JAWS, but that was a few years back. Then ETS would send prep
> > materials
> > in Braille to my son's guidance counselor,  who happened to be  the
> testing
> >
> > coordinator in our high school. I believe they were copies of old  tests.
> > They also sent a Braille booklet of Nemeth symbols that would be used in
> > the
> > math section of the SAT.
> >
> > The PSAT in Braille was only offered on the Wednesday before the PSAT
> > Saturday date. A challenge to find a quiet testing environment on a
> normal
> > high
> > school day with a couple of thousand teenagers moving around the
>  building
> > following their usual schedules, not quite like the totally quiet
>  building
> >
> > the other kids have on a Saturday morning. Also, when testing on a
> > Wednesday, one misses the regularly scheduled classes and is of course
> > responsible
> > for presented information. Looked into this and it is just the way  it is
> > done, throughout the country, I was told. I decided this was one of those
> > "Pick and choose your battles" situations.
> > Guessing you may have a couple of years before dealing with the AP  final
> > exam testing. That was another whole situation and a battle I chose to
> > fight.
> > Eileen Molloy
> >
> > Date: Fri, 05 Oct 2012 16:38:43 -0700
> > From: DrV  <icdx at earthlink.net>
> > To: "Blind Kid Mailing List, (for parents of blind  children)"
> > <blindkid at nfbnet.org>
> > Subject: [blindkid]  Preparing for the PSAT & Pre-ACT - Seeking
> > Insights
> > Message-ID:  <CC94BD93.B459%icdx at earthlink.net>
> > Content-Type: text/plain;   charset="ISO-8859-1"
> >
> > Hi All,
> > My 10th grader Vejas  (braille-reader; no vision) will be taking the both
> > the
> > PSAT & Pre-ACT in  the next 3 weeks ? any suggestions on taking the
> actual
> > test? Any suggestions  on how to best study for these? All the kids got a
> > PSAT descriptive booklet ?  we found a PDF of it on the web. The actual
> > Pretest booklet however seems to  only be available in print. Suggestions
> > anyone? Words of experience &  wisdom?
> >
> > He did look on Bookshare but he says there were problems with the  books
> >
> > Book 1: Cracking the SAT (2013 Edition).
> > Problems: Most, if not  all, of the reading comprehension passages are
> > omitted & in some of the  multiple choice questions, the choice answers
> are
> > cut off.
> >
> > Book 2:  Cracking the PSAT/Nmsqt (2013 Edition).
> > Problems: The reading comprehension  passages seem to have been omitted.
> >
> > Thanks in advance for your time &  input.
> > EricV
> >
> >
> >
> >
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> >
>
>
>
> ------------------------------
>
> Message: 9
> Date: Sun, 07 Oct 2012 22:57:14 -0400
> From: "Brian Hatgelakas" <brian.hatgelakas at verizon.net>
> To: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: [blindkid] Taking the SAT Braille Test
> Message-ID: <000801cda500$9f85c6e0$1400ba43 at BRIAN>
> Content-Type: text/plain;       charset="iso-8859-1"
>
> I took the SAT's in 2001 and took them on a Wednesday with my TVI as my
> proctor.  @Arielle How did you get to take them on a Saturday since TVI's
> don't work weekends.
>
> ------------------------------
>
> Message: 10
> Date: Sun, 7 Oct 2012 21:05:24 -0600
> From: Arielle Silverman <arielle71 at gmail.com>
> To: "Blind Kid Mailing List,    (for parents of blind children)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Taking the SAT Braille Test
> Message-ID:
>         <CALAYQJCaPa=
> YRMWb4QO5YmqjPM8dJ3Ah9EKp5YhW6Mtna0cgBA at mail.gmail.com>
> Content-Type: text/plain; charset=ISO-8859-1
>
> My TVI was willing to come in on Saturday to proctor my test. I don't
> know if she was paid extra for this.
> Arielle
>
> On 10/7/12, Brian Hatgelakas <brian.hatgelakas at verizon.net> wrote:
> > I took the SAT's in 2001 and took them on a Wednesday with my TVI as my
> > proctor.  @Arielle How did you get to take them on a Saturday since TVI's
> > don't work weekends.
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> >
>
>
>
> ------------------------------
>
> Message: 11
> Date: Sun, 7 Oct 2012 20:18:23 -0700
> From: Julie Yanez <jyanez112 at gmail.com>
> To: "Blind Kid Mailing List,    (for parents of blind children)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] our introduction
> Message-ID:
>         <CALOZGC2wjYEvbVTb2+2T0076b3q2d5-GtHz9zR9=
> yuS1ykh2-w at mail.gmail.com>
> Content-Type: text/plain; charset=ISO-8859-1
>
> Hi Tuesday,
> Welcome to the group. You boy certainly has something going on. And as his
> mother, you are his best advocate. Do give up on pushing to find a reason
> for everything. He may have more then one illness or disability.
> My daughter is 10 and was born with ROP. So vision never developed. She's a
> braille reader and writer. She is very independent as well. We are
> currently trying to figure out if her lack of attention span is considered
> a "blindism" or an ADD. She gets distracted with everything she hears. Most
> kids look up, see what's going on, then get back to work. She has to take a
> min to understand what's going on, who walked in the room, ect. And then
> she ends up off track.
> Don't be discouraged. You may have many more hurdles ahead. Just know here
> is one place you can turn to if you need advise of to even vent.
>
> Hugs and kisses!
> Julie
> On Oct 7, 2012 5:57 PM, "Penny Duffy" <pennyduffy at gmail.com> wrote:
>
> > Doreen
> >
> > Has a great suggestion.
> >
> > We saw a geneticist for our daughter and that is who diagnosed her and it
> > has since (two year later) been our best appointment.  We
> > see neuro-ophthalmologist for my daughter and to some of the best in the
> > country and they are rarely that helpful.  We loved our geneticist
> > appointments. What caused my daughter's blindness is very rare for her
> age.
> > -Penny
> > On Sun, Oct 7, 2012 at 8:42 PM, Doreen Frappier <dcfrappier at yahoo.com
> > >wrote:
> >
> > > Hi Tuesday,
> > > I would like to suggest that your child see a neurologist or
> geneticist.
> > > It is possible that there is something else going on, and maybe all the
> > > symptoms combined are a disorder. There are some neurological disorders
> > > that cause vision loss, some progressive.  Maybe looking at all of the
> > > symptoms he is experiencing combined might help. We saw a geneticist
> for
> > > our vi twins since they had more than one problem. They searched for a
> > > syndrome, but were unable to come up with anything. I think it's worth
> a
> > > shot.
> > >
> > > Doreen
> > > (Mother of legally blind 18 year old twins)
> > >
> > > Sent from my iPad
> > >
> > > On Oct 7, 2012, at 2:11 PM, *2sday* <tuesday0728 at yahoo.com> wrote:
> > >
> > > > Hello all ...
> > > >
> > > >    My name is Tuesday and I am from Cincinnati,
> > > > Ohio. I am 30 years old and have four amazing children. Joey (7),
> > Carson
> > > (5),
> > > > Landon (4), Summer (2) These little people are my world! Our oldest
> > Joey
> > > has
> > > > always been hyper and struggled socially and in school. He was 4 when
> > he
> > > started
> > > > preschool and mostly just had behavior issues stemming from him being
> > so
> > > hyper.
> > > > Kindergarten was a major struggle, Joey was behind and we noticed
> that
> > he
> > > > couldn't see all that well. He failed his school eye exams so we went
> > to
> > > the
> > > > local eye Dr. which he passed. His vision was fine. It was in
> > > Kindergarten when
> > > > we started his IEP for behavior and being so behind. Things that we
> > > would notice
> > > > were Joey doing what seemed like adjusting his eyes. He would widen
> > them
> > > and
> > > > look to the side. His pupils were also VERY dilated! My mom would
> > > question this
> > > > all the time. When we went to the regular eye Dr. we mentioned this
> but
> > > nothing
> > > > ever came from it. Kindergarten and 1st grade he was seeing the same
> > > > intervention specialist who was always keeping in contact with me
> > > because she
> > > > just HAD to know what was going on with Joey. She had been working
> with
> > > kids
> > > > with disabilities for 30 years and Joey just caught her attention.1st
> > > grade was
> > > > challenging. Joey was so behind that he would just cause trouble in
> > > class and be
> > > > sent to the principles office a lot. Up to this point we had tried
> > > several ADHD
> > > > medications for his behavior and attention with not much success. We
> > > were also
> > > > going through Cincinnati Childrens Hospital for some physiological
> > > testing. I
> > > > had told the psychiatrist about Joeys vision and how we hadn't gotten
> > > many
> > > > answers. She told me to call Childresns and set up and appointment
> with
> > > > the ophthalmologist there. I did, & it took 7 months of waiting to
> get
> > > in.
> > > > We saw her April 26th, 2012. She said right away that there was some
> > > issues with
> > > > his retina. His central vision was good so there was nothing that
> > > prescription
> > > > glasses would do but she wanted us to see a Retina specialist. We saw
> > > Dr. Sisk
> > > > with the Cincinnati Eye Institute on May 1st 2012.
> > > >
> > > > This day ... I remember oh so well. After some
> > > > testing we met with Dr. Sisk and this is when he told me that Joey
> was
> > > legally
> > > > blind. The way that he said it "Joey will never be able to drive a
> car
> > > or fly a
> > > > plane, this will limit a lot of things in life for him" As a mother I
> > > > was devastated. I broke down. After getting myself back together to
> > > listen to
> > > > the Dr. we were told that Joey possibly has one of two diseases.
> > Leber's
> > > congenital amaurosis (LCA) or Retinitis pigmentosa. We did blood work
> and
> > > had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to
> > do
> > > an ERG as soon as possible but their machine was broken and we had to
> > wait
> > > until the new one came in. waiting for that felt like forever! When we
> > did
> > > finally go in to do the ERG it wasn't working properly so it felt like
> we
> > > had Joey put under for no reason. We did get to talk to the Dr. a
> little
> > > better that day and he was very certain that what Joey was dealing with
> > was
> > > LCA. He had never told us that he was leaning more towards LCA so this
> > was
> > > news to us. so now, we were just waiting for test results to come back.
> > > >
> > > > Watching Joey we did notice more loss of peripheral vision. Over the
> > > summer it seemed to get worse. He started tripping over things and
> > holding
> > > on to me whenever he walked. He did fall a few times and you could tell
> > > that we was scared. Last week we received a call from the Dr. that the
> > > testing from Carver lab came back. Out of the 14 genes that were tested
> > for
> > > LCA they were all negative. ?? My initial thought was "WHAT?! you were
> so
> > > sure!! you told us it was...." both his father and I were confused. If
> > it's
> > > not LCA then RP? is it RP? so here we are, back at square one. In the
> > dark
> > > and no closer to knowing what it is that Joey has. Dr. Sisk recommended
> > > that if we could afford it to go through with the phase 2 testing so we
> > > could see if it is LCA. He said we need to trust him with this. He
> still
> > > thinks it's LCA. I asked him why he wasn't leaning more towards RP and
> he
> > > said RP is normally in older people. Everything I've read on RP though
> > > sounds like
> > > > Joey.
> > > >
> > > > Joey also had his first seizure in June and another in September. We
> > > have had an MRI and EEG which both came back normal. Joey's behavior
> has
> > > been so bad that no one wants to be around him. We have started with a
> > > therapist and are scheduled to see the psychiatrist in November. He has
> > > ADHD, ODD, ADD, and is Bi-polar. Atleast that is what they say...
> > > >
> > > > What scares his father and I is, what if it's not LCA or RP and it's
> > > something else that also includes his behavior and seizures? We had
> > > discussed Battens disease with Dr. Sisk in the beginning and again when
> > he
> > > heard of joey's seizures but with a normal MRI and EEG it's not
> likely. I
> > > am a member of the LCA boards on yahoo and they had reffered me to this
> > > group. I'm just at a loss as to what to do for my child. I feel
> helpless.
> > > >
> > > > Thank you for listening to my long story :)
> > > >
> > > > Tuesday
> > > > _______________________________________________
> > > > blindkid mailing list
> > > > blindkid at nfbnet.org
> > > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > > >
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/dcfrappier%40yahoo.com
> > >
> > > _______________________________________________
> > > blindkid mailing list
> > > blindkid at nfbnet.org
> > > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > > To unsubscribe, change your list options or get your account info for
> > > blindkid:
> > >
> > >
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
> > >
> >
> >
> >
> > --
> > --
> > --Penny
> > ----------
> > My Blog - visionfora.blogspot.com
> >
> > NH Parents of Blind Children http://www.nhpobc.org/
> > NHPOBC on facebook   https://www.facebook.com/nhpobc
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
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> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/jyanez112%40gmail.com
> >
>
>
> ------------------------------
>
> Message: 12
> Date: Mon, 8 Oct 2012 03:42:52 -0700 (PDT)
> From: Debby B <bwbddl at yahoo.com>
> To: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Taking the SAT Braille Test
> Message-ID:
>         <1349692972.2947.YahooMailNeo at web112508.mail.gq1.yahoo.com>
> Content-Type: text/plain; charset=iso-8859-1
>
> Winona's TVI will be coming in on Saturday to proctor during the regular
> SAT hours. Then she will pull Winona during the week to finish the test.
> She'll probably only do one sub-test a day.
>
> ?
> Debby
> bwbddl at yahoo.com
>
> ~"Kindness is a language which the deaf can hear and the blind can
> read."~Mark Twain
>
>
> ________________________________
>  From: Arielle Silverman <arielle71 at gmail.com>
> To: "Blind Kid Mailing List, (for parents of blind children)" <
> blindkid at nfbnet.org>
> Sent: Sunday, October 7, 2012 11:05 PM
> Subject: Re: [blindkid] Taking the SAT Braille Test
>
> My TVI was willing to come in on Saturday to proctor my test. I don't
> know if she was paid extra for this.
> Arielle
>
> On 10/7/12, Brian Hatgelakas <brian.hatgelakas at verizon.net> wrote:
> > I took the SAT's in 2001 and took them on a Wednesday with my TVI as my
> > proctor.? @Arielle How did you get to take them on a Saturday since TVI's
> > don't work weekends.
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> >
>
> _______________________________________________
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> blindkid:
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>
> ------------------------------
>
> Message: 13
> Date: Mon, 8 Oct 2012 05:46:10 -0700 (PDT)
> From: Doreen Frappier <dcfrappier at yahoo.com>
> To: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Taking the SAT Braille Test
> Message-ID:
>         <1349700370.45928.YahooMailNeo at web140605.mail.bf1.yahoo.com>
> Content-Type: text/plain; charset=iso-8859-1
>
> The school's Special Ed department chair came in on two Saturdays for my
> twins to take their's last year as juniors, and is going to do it again
> this year.
>
> Doreen
>
>
>
> ________________________________
>  From: Brian Hatgelakas <brian.hatgelakas at verizon.net>
> To: "Blind Kid Mailing List, (for parents of blind children)" <
> blindkid at nfbnet.org>
> Sent: Sunday, October 7, 2012 9:57 PM
> Subject: [blindkid] Taking the SAT Braille Test
>
> I took the SAT's in 2001 and took them on a Wednesday with my TVI as my
> proctor.? @Arielle How did you get to take them on a Saturday since TVI's
> don't work weekends.?
> _______________________________________________
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> blindkid at nfbnet.org
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> To unsubscribe, change your list options or get your account info for
> blindkid:
>
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/dcfrappier%40yahoo.com
>
> ------------------------------
>
> Message: 14
> Date: Mon, 8 Oct 2012 08:36:44 -0600
> From: "melissa R green" <graduate56 at juno.com>
> To: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Test Prep
> Message-ID: <72A4D69A078B4965BD28050709FFBC38 at HP30910210001>
> Content-Type: text/plain;       charset="iso-8859-1"
>
> I haven't had the experience where I had to take my sATs with other blind
> students who used braille.
> I was the same as Arielle.
> Have a blessed day.
> Many Blessings, Warmly,
> Melissa and Pj
> I never change, I simply become more myself.
>
>
>
> ----- Original Message -----
> From: "Arielle Silverman" <arielle71 at gmail.com>
> To: "Blind Kid Mailing List,(for parents of blind children)"
> <blindkid at nfbnet.org>
> Sent: Sunday, October 07, 2012 7:43 PM
> Subject: Re: [blindkid] Test Prep
>
>
> Hi Eileen,
> That's very odd that Braille students throughout the country must take
> the test on a Wednesday. I took the test in 2002, and I took it on the
> same Saturday as the other students. The only difference was that I
> took the test in the VI classroom with my TVI as proctor and of course
> used a Braille test. I have some trouble believing that everyone who
> uses Braille would have to test at the same time and at a different
> time as the other students. Have others experienced this?
> Also, I'm just curious, what problems did Patrick have with the AP
> test? Are AP scores still being released late for blind students? I
> know back in 2006 the NFB was taking this issue on.
> Arielle
>
> On 10/7/12, EMMOL at aol.com <EMMOL at aol.com> wrote:
> >
> > Dr. V,
> > After registering for the tests and creating an account, my son,
>  Patrick,
> > tried the online sample questions provided by ETS. Not always easy  to do
> > with JAWS, but that was a few years back. Then ETS would send prep
> > materials
> > in Braille to my son's guidance counselor,  who happened to be  the
> > testing
> >
> > coordinator in our high school. I believe they were copies of old  tests.
> > They also sent a Braille booklet of Nemeth symbols that would be used in
> > the
> > math section of the SAT.
> >
> > The PSAT in Braille was only offered on the Wednesday before the PSAT
> > Saturday date. A challenge to find a quiet testing environment on a
> normal
> > high
> > school day with a couple of thousand teenagers moving around the
>  building
> > following their usual schedules, not quite like the totally quiet
> > building
> >
> > the other kids have on a Saturday morning. Also, when testing on a
> > Wednesday, one misses the regularly scheduled classes and is of course
> > responsible
> > for presented information. Looked into this and it is just the way  it is
> > done, throughout the country, I was told. I decided this was one of those
> > "Pick and choose your battles" situations.
> > Guessing you may have a couple of years before dealing with the AP  final
> > exam testing. That was another whole situation and a battle I chose to
> > fight.
> > Eileen Molloy
> >
> > Date: Fri, 05 Oct 2012 16:38:43 -0700
> > From: DrV  <icdx at earthlink.net>
> > To: "Blind Kid Mailing List, (for parents of blind  children)"
> > <blindkid at nfbnet.org>
> > Subject: [blindkid]  Preparing for the PSAT & Pre-ACT - Seeking
> > Insights
> > Message-ID:  <CC94BD93.B459%icdx at earthlink.net>
> > Content-Type: text/plain;   charset="ISO-8859-1"
> >
> > Hi All,
> > My 10th grader Vejas  (braille-reader; no vision) will be taking the both
> > the
> > PSAT & Pre-ACT in  the next 3 weeks ? any suggestions on taking the
> actual
> > test? Any suggestions  on how to best study for these? All the kids got a
> > PSAT descriptive booklet ?  we found a PDF of it on the web. The actual
> > Pretest booklet however seems to  only be available in print. Suggestions
> > anyone? Words of experience &  wisdom?
> >
> > He did look on Bookshare but he says there were problems with the  books
> >
> > Book 1: Cracking the SAT (2013 Edition).
> > Problems: Most, if not  all, of the reading comprehension passages are
> > omitted & in some of the  multiple choice questions, the choice answers
> > are
> > cut off.
> >
> > Book 2:  Cracking the PSAT/Nmsqt (2013 Edition).
> > Problems: The reading comprehension  passages seem to have been omitted.
> >
> > Thanks in advance for your time &  input.
> > EricV
> >
> >
> >
> >
> >
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> >
>
> _______________________________________________
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> blindkid at nfbnet.org
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>
>
>
>
> ------------------------------
>
> Message: 15
> Date: Mon, 8 Oct 2012 08:37:33 -0600
> From: "melissa R green" <graduate56 at juno.com>
> To: "Blind Kid Mailing List,    \(for parents of blind children\)"
>         <blindkid at nfbnet.org>
> Subject: Re: [blindkid] Taking the SAT Braille Test
> Message-ID: <B7B0F9C2797F4D3AB82F88BD83D08280 at HP30910210001>
> Content-Type: text/plain;       charset="iso-8859-1"
>
> I did mine during the week.
> I have been out of high school pretty long.  May be it has changed.
>
> Have a blessed day.
> Many Blessings, Warmly,
> Melissa and Pj
> I never change, I simply become more myself.
>
>
>
> ----- Original Message -----
> From: "Arielle Silverman" <arielle71 at gmail.com>
> To: "Blind Kid Mailing List,(for parents of blind children)"
> <blindkid at nfbnet.org>
> Sent: Sunday, October 07, 2012 9:05 PM
> Subject: Re: [blindkid] Taking the SAT Braille Test
>
>
> My TVI was willing to come in on Saturday to proctor my test. I don't
> know if she was paid extra for this.
> Arielle
>
> On 10/7/12, Brian Hatgelakas <brian.hatgelakas at verizon.net> wrote:
> > I took the SAT's in 2001 and took them on a Wednesday with my TVI as my
> > proctor.  @Arielle How did you get to take them on a Saturday since TVI's
> > don't work weekends.
> > _______________________________________________
> > blindkid mailing list
> > blindkid at nfbnet.org
> > http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> > To unsubscribe, change your list options or get your account info for
> > blindkid:
> >
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/arielle71%40gmail.com
> >
>
> _______________________________________________
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> To unsubscribe, change your list options or get your account info for
> blindkid:
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>
>
>
>
> ------------------------------
>
> Subject: Digest Footer
>
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>
> ------------------------------
>
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> ****************************************
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