[blindkid] Failure to Thrive or Live to defy???

Bernadette Jacobs bernienfb75 at gmail.com
Thu Aug 30 13:31:09 UTC 2012


Good Morning:

I have a daughter who is blind, extremely bright, beautiful, outgoing
and friendly, and I know many of you already know her.  Yes, she is
quite the display showgirl, if you will.  She keeps talking about
wanting to be on TV as a career for the rest of her entire life.  You
all know she has the looks for it too.  Yet, there are some ways here
in which she gravely concerns me and I'd like some concrete
suggestions to deal with those concerns.

Firstly, when we first brought her back to the U.S. from Thailand, she
weighed 30 pounds.  She was five years old then.  She has always had
amazingly impecable command of her eating utencils.  So, that has
never been a problem.  When she was first seen by the pediatrician,
one of the diagnoses given was "Failure to Thrive."  She will be ten
years old in March, 2013 and she still only weighs 36-1/2 pounds!
There are a number of issues and things here that enter into this.
Firstly, she is a frightful dawdler.  Doesn't matter whether or not
we're talking about getting dressed in the morning to eating.  If I
let her get dressed independently in the morning, it never takes her
any less than a full hour.  She knows how to do it all.  she simply
twirrels her clothing in between her fingers, turns it inside out and
right side out again and again for 20 minutes at a time or until
someone calls her on it.  When she's eating, she may chew on a bite of
something for a full seven minutes before swallowing it?  When she's
watching tv or playing, rather than going to the toilet when the need
arises, she'll see how long she can ignore it before simply standing
there while it's running down her legs?

My husband and I have asked her countless times, "What would you like
to eat?" constantly giving her choices.  She chooses whatever it is,
and these behaviors still persist.  There actually have been times
when she asks us for "rewards???"  So, she's only going to get dressed
if there's a "reward" in it for "HER?"  She's only going to eat if
there's a "reward" in it for "her?"  She's only going to do her
homework if there's a "reward" in it for "her???"  She will only keep
herself dry and clean if there's a "REWARD" in it for "HER???"  We
have even offered to purchase ballet lessons for her if only she will
keep dry and/or let her have a "Sleep-over" if she can keep dry.
She's very, very seldom dry at night.  She has been messing in
pull-ups then hiding them so we've taken the pull-ups away.  She's
going to be ten in March!  She knows how to use the toilet and clean
herself and she knows she can ask for help if she's having trouble.
If she was two, this would be one thing.  But she's not!  Our son is
Blind and Autistic and I can't remember the last time he's had a
wetting accident.  He's in the habit of going upstairs to the toilet
as soon as he walks in the door off the school bus in the afternoon
and has been doing that for at least a year now.  I don't even have to
prompt him.  He simply does it.

I am under the understanding there is a diagnosis for the toileting
issues, that maybe because she is so underweight that maybe her system
is extremely under-developed that she can't yet control that part just
yet.  does anyone here have any idea what this is? There must be a
name/diagnosis?  Or, in fact, is this purely indignant manipulation as
I am suspecting?  Can anyone enlighten me?  I've tried, at least, from
what I thought was the right source for assistance for this, (to no
avail).

Our daughter is simply blind.  She's very, very bright, beautiful,
fun-loving, and even helpful and thoughtful of others.  But I don't
want to shower her with "REWARDS" because by this time, she's a bit
beyond the age of two and I don't want her to become already more
self-centered expecting that she can only do something in life for its
rewards.  After all, how many of us are rewarded for cleaning up
toileting issues.  I refuse to call them accidents because as it is
now, these are simply acts of lazy carelessness and negligance and I
don't believe that my husband and I are the only things here helping
these issues along.  If I really thought a "REWARD" system worked,
I'd be the first one to promote it.  But she's far too smart and I
think this is getting beyond age-appropriate???  It's almost as if the
"failure to thrive" has only become the "live to defy."  it's not that
she can't do it.  It's that she WON'T for whatever reason.

If anyone here on this list has any ideas and would like to touch base
with me offlist, my email is bernienfb75 at gmail.com.  Cell:
410-215-8587.

Take care everyone and have a great day!





On 8/30/12, Arielle Silverman <arielle71 at gmail.com> wrote:
> Hi Julie,
> I want to offer my perspective as a blind adult. First of all I agree
> with everyone else that your younger daughter's aggressive behavior is
> unacceptable and must be stopped before a positive relationship
> between the two girls can happen. That said, conflict and aggression
> between siblings is very common and I actually think this particular
> situation has very little to do with blindness. Your two daughters
> simply prefer to play in different ways and your younger one is
> getting frustrated because your older one is not interested in playing
> the way she wants to. In addition to blindness, there is an age gap
> between them and probably personality differences as well that can
> lead to disagreement.
> My perspective is a little different because I am blind and my sighted
> sister is older (by two years) rather than younger. I don't remember
> interacting with her at age 3, but I do remember some interactions
> when I was 6 or 7 and she was 8 or 9. I remember a lot of times when I
> wanted to engage her in pretend games and she wasn't interested and
> kept telling me to stop talking about things and people that weren't
> real. She definitely wanted to play and interact with me, but just
> wanted to play differently than I did because she was older and had
> more advanced interests. Again, I don't think blindness factored into
> this much if at all.
> I definitely think that finding games and activities that fit both
> their interests is the best way to start. This might be hard if they
> are very different, but I think you should be able to find something
> they can both enjoy and where blindness doesn't present any
> disadvantage. I like the idea of playing in the dark. When they are a
> little older they can also learn card games, board games etc.
> I also think it's important to ensure you are giving both of them
> roughly equal amounts of one-on-one attention and as Carol said, never
> designate the sighted sibling as a helper. They should both be helping
> each other.
> Best,
> Arielle
>
> On 8/29/12, Carol Castellano <carol_castellano at verizon.net> wrote:
>> Hi Julie,
>>
>> My blind child was almost 3 when my sighted child was born and I did
>> have to work a bit to get them to play together.   My older one, a
>> girl, wanted nothing to do with this annoying little guy who made
>> noise, sat in her mommy's lap, knocked over her things, reached into
>> her bowl, climbed up her leg, and practically turned himself inside
>> out trying to get her attention.  It would have broken my heart if
>> they grew up without a good relationship, so I was determined to work on
>> it.
>>
>> One thing I did with my blind child was whenever we passed a park or
>> playground, I pointed out the sounds of children laughing and playing
>> and said things like "Oh, listen to the sound of the happy
>> children.  They're playing and having fun, just like we do when we go
>> to the park."  I was trying to have her associate the sounds of
>> children with happy thoughts and activities she enjoyed.
>>
>> The other thing that entailed my blind child was teaching her how to
>> pretend play, as others have mentioned.  The first time it happened,
>> she went to sit down on the floor but accidentally sat down on me.  I
>> laughed and said, "what do you think I am...a sofa?"  She thought
>> that was hysterical and so we played sitting down on the pretend sofa
>> for several happy minutes.  That was the first time I saw her pretend
>> something.  We then went on to using a cardboard box to pretend to
>> take a bath and using a Little People playschool set to pretend going
>> to school.
>>
>> Regarding the two playing together, I found I had to be present in
>> the beginning.  I used to read them many stories about animal
>> families and the first game we played together was the dog family,
>> with the mommy dog and the two puppies.  This was the first time she
>> tolerated actual playing with her little brother.  The fun of the
>> game trumped her disinterest in him--I think she finally found him
>> useful for something!
>>
>> We went on to acting out stories, such as Jack & the Beanstalk.  I
>> also banged out some notes on the piano that they moved/danced/jumped
>> around to and made up some high note/low note games where they had to
>> stand up or sit down as i played them.
>>
>> Hope some of these ideas will be helpful to your family.  Engaging
>> the kids in something they both find fun, where they can see the
>> value of each other as a team member, can help create a better
>> relationship.
>>
>> I would use extreme caution about making your younger child a helper
>> to the older one.  This could cause both children to internalize the
>> idea that blind people always need help and this will not help your
>> older one reach independence.  Find out the techniques that blind
>> people use to perform tasks and teach them to your blind child.  If
>> she needs assistance along the way, it is probably better to provide
>> it yourself in a teaching way, rather than having your younger one
>> provide it.  There will be times that your younger one assists your
>> older one; but make sure there are an equal number of times that the
>> older one assists the younger.  Hopefully, your children will then
>> grow up to view themselves as competent and confident and to view
>> each other as equals.
>>
>> Best wishes,
>> 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 12:33 PM 8/28/2012, you wrote:
>>>I have 2 daughters. My 5 yr old is blind, my 3 yr old is not. We
>>>have had a lot of aggressive behavior from our 3 yr old towards our
>>>5 yr old. Althou the reasons for the aggression seem to be
>>>multifaceted, but one that makes sense to us is that our 5 yr old
>>>wont play with her. We have not pushed this because I understood why
>>>my 5 yr old would not want to play with someone who hits bites,
>>>pulls her hair, etc. I am trying very hard to facilitate play
>>>between them, which sometimes works and sometimes doesn't. Lastnight
>>>my 5 yr old said, I don't know how to play with her. This is true,
>>>she doesn't know how to socialize with children very well. It is
>>>something we have been working on and is in her IEP. Do any of you
>>>have any experience, suggestions, recommendations for anything? We
>>>are open to just about Anything at this point. We realize both our
>>>girls have ha ing trouble because of this issue, and it's very sad,
>>>and frustrating.
>>>Thank you for any response!
>>>Julie
>>>
>>>Sent from my iPad
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>>
>>
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>
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