[blindkid] Which Direction Should I Go?

Marianne Denning marianne at denningweb.com
Tue Jan 20 02:43:18 UTC 2015


That is another good thought.  Now that you mention that you remind me that
I have worked briefly with some students who did not have a clear diagnosis
for several years.  In fact, the doctors, teachers and other professionals
thought the student was making it all up.  That can certainly make parents
feel frustrated and angry.  

I would also recommend that you increase the font to 16, 18... and find out
where he is most comfortable.  Just because he can read with 14 doesn't mean
that is the best font size.  Also, but sure to try different fonts.  Have
you tried light or white print on a dark background.  Many people with
decreased vision prefer this.  Those are just a couple of suggestions.

-----Original Message-----
From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of
lindashalm--- via blindkid
Sent: Monday, January 19, 2015 8:35 PM
To: haley.dare at yahoo.com; blindkid at nfbnet.org
Subject: Re: [blindkid] Which Direction Should I Go?

the night blindness , or lowlight blindness, makes me think of Retinitis
Pigmentosa, which is what my son has.   after years of eye doctor visits and
trouble with schoolwork, deterioration of the rods and cones in his retinas
finally became visible to the ophthalmologist.  There maybe other conditions
with night blindness, but that symptom is a big clue to RP.   my son is now
31 and was diagnosed at age 8.  trying to read print was doable but
exhausting.    all the  advice you've gotten should be helpful.


Linda, NJ



-----Original Message-----
From: Haley Dare via blindkid <blindkid at nfbnet.org>
To: Himanshu Neema <hn.nopbc at gmail.com>; Marianne Denning
<marianne at denningweb.com>; Blind Kid Mailing List, (for parents of blind
children) <blindkid at nfbnet.org>; Blind Kid Mailing List, (for parents of
blind children) <blindkid at nfbnet.org>
Sent: Mon, Jan 19, 2015 6:23 pm
Subject: Re: [blindkid] Which Direction Should I Go?


Thank you, everyone, for your great advice and warm welcomes!  I had
requested a free white cane from NFB, and Aron has been using it alot
lately...especially since it started snowing and making is harder to see the
ground.
Marianne, I don't believe that Aron has C.V.I., although I did in the
beginning and researched it fully.  He doesn't fit into any of the possible
causes...no birth trauma or oxygen depletion.  There just doesn't seem to be
any "medical" 
reason for this blindness.  We were able to get the computer screen made
bigger for school by hooking the laptop into our television.  I've had the
print up to
14 pt and Aron says that he can see it really well, but he cannot read for
more than a few minutes w/o experiencing eye strain/fatigue (he says his
eyes hurt and starts rubbing them).  This inability to read for length of
time is just going to hurt him later on.  Suggestions?  I will definitely
have him take the reading assessment from NFB.  Arielle, I will definitely
check out NOPBC on Facebook; I wasn't aware that they had a page.  Thank you
for this info!  
Himanshu, thank you for the references to consultants to check with in Royal
Oak.  Lucy, thank you for the offer to put me in touch with other
homeschooling 
families.   I may take you up on that!  Does anybody know of a blind
childrens' 
advocate here in SW Michigan that could come alongside our family?
h 

     On Monday, January 19, 2015 5:56 PM, Himanshu Neema via blindkid
<blindkid at nfbnet.org> wrote:
   
 

 Haley,

My personal opinion is that he should definitely learn blindness skills, not
just because it will make his life a lot easier, but also because it is
going to empower him with a lot of self-confidence. I can tell you from my
personal experience with my blind daughter that you will be highly proud and
delighted to see the independence and self-confidence in your son. You also
need to get it in writing in his IEP and if you face struggle with that then
you need to get advocacy help (if possible from a blind person who can serve
as a role model).

Also, if possible, I would encourage you to see:

1) Associated Retinal Consultants in Royal Oak, Michigan (I think they are
simply the best).
2) Visit ROPARD center in Royal Oak, Michigan (Ms. Paula). They will provide
a number of techniques, tools, and mobile apps to help him learn to use any
and all vision he has to make the best of it.

Good luck!
Himanshu




> On Jan 19, 2015, at 4:38 PM, Marianne Denning via blindkid
<blindkid at nfbnet.org> wrote:
> 
> It may seem like Arielle and I are giving some contradictory 
> information.  He
would probably qualify for an IEP but his visual acuity of 20/35 in the
better eye would cause most professionals to discourage braille and
nonvisual techniques.  I still think there is something else going on with
your son's vision.  I do agree with Arrielle that there is no harm in
learning braille but he needs to learn to read it with his fingers.  If he
reads it with his eyes it will not do any good. Do you enlarge the print for
him to read?  If so, what is his preferred font size? 
> 
> -----Original Message-----
> From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of 
> Arielle
Silverman via blindkid
> Sent: Monday, January 19, 2015 4:56 PM
> To: Haley Dare; Blind Kid Mailing List, (for parents of blind 
> children)
> Subject: Re: [blindkid] Which Direction Should I Go?
> 
> Hi Dare, and welcome. I am a 30-year-old woman who's been totally 
> blind since
birth. While I am not a doctor or a parent, I have a few thoughts on this.
The most important is that there is absolutely nothing wrong with being
functionally blind or using nonvisual techniques to do things. I would also
say that if your son has tried visual techniques and they don't work well
for him, regardless of any medical opinion, it can only help him to try a
new, nonvisual way to do those things. I'd definitely suggest switching from
an ID cane to a white cane that's fitted for him and also having him learn
Braille.
> Again, these things might help him and they definitely will not hurt 
> him. If
your son's vision tests as 20/400, then he should qualify for an IEP where
you can request he receive Braille instruction. If you are homeschooling,
there are some other parents on this list, I believe, who have gone that
route. You should also check out www.nfb.org/nopbc and www.blindchildren.org
or the NOPBC group on Facebook to get some excellent resources on cane usage
and to connect with other parents. Good luck and welcome!
> 
> Best,
> Arielle Silverman, Board Member, National Federation of the Blind 
> Greater
Seattle Chapter
> 
>> On 1/19/15, Haley Dare via blindkid <blindkid at nfbnet.org> wrote:
>> Good afternoon,
>> I haven't posted to this listserve before, but I am seeking some 
>> direction...hopefully, someone out there has a child who is 
>> experiencing the same type of problems as my son and can give me some 
>> advice.  Okay, here goes...
>> My 8 year old has been dx with amblyopia, huge refractive error, 
>> strabismus, accommodative esotropia, and a problematic visual 
>> processing disorder.  He wears very strong glasses with a 
>> bifocal/magnifier in the bottom.  We don't know how well he sees 
>> peripherally, but we know that his acuity is 20/400 in his bad eye, 
>> and 20/35 in his good eye with correction.  Our ophthalmologist says 
>> his eyes are structurally healthy and that none of these problems 
>> cause
"blindness", but my son's behavior suggests otherwise.
>> He walkes into the sides of the wall, misses changes in the terrain, 
>> panics about leaving the house, and won't go out in the dark (or a 
>> cloudy day), falls over toys or items that are right in front of him 
>> and acts very clingy and nervous in large groups of people or in 
>> unfamiliar
environments.
>> He can read, but not for any length of time, and the light must be
bright.
>> He struggles with glare (especially on a bright, snowy day), print 
>> size, reading and math in school; I currently k12 him at home.  He 
>> carries a white cane for identification purposes, but I've noticed 
>> that his posture has improved.
>> Here's my question...and it probably seems pretty stupid, but I'm 
>> going to ask it anyway.  Is my son blind?  Should I be trying to get 
>> him some nonvisual services (like braille, O&M, etc), maybe under 
>> sleepshades?  I sometimes wonder if I should just "lose" his glasses 
>> so he isn't so overstimulated (crazy thought, I know, but he does 
>> seem calmer
w/o them).
>> Right now, he has no professional supports, just me trying to teach 
>> him a few things.  Perhaps permaturely, but I worry about his 
>> future...he's a guy and needs to be able to read, work and take care 
>> of
himself and a family.
>> I've been in touch with so many organizations and people that have 
>> provided wonderful advice, but I have yet to come across another 
>> parent who is living with this confusing visual conundrum.  Can 
>> anybody out there suggest to me which direction to go?  Thanks so much.
>> hdare
>> _______________________________________________
>> 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%40gma
>> i
>> l.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/marianne%40denni
> ngweb.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/hn.nopbc%40gmail
> .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/haley.dare%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/lindashalm%40aol.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/marianne%40denningweb.
com





More information about the BlindKid mailing list