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

[Julie Yanez]

Arielle,
My 10 year has finally hit the 60lb mark. But she's tall! About 5'4" now
and still growing like a weed. She doesn't seem to ever be full. And also
doesn't seem to gain the appropriate weigh either. She completely blind due
to ROP. She was a micro premee.
What are the optic issues you are talkin about that are linked to weight?
I'd really like to know so I can address it with her pediatrician.

-julie:)
On Aug 30, 2012 2:16 PM, "Arielle Silverman" <arielle71 at gmail.com> wrote:

> Hi Bernadette,
> I have had difficulty gaining weight for most of my life and I, too,
> weighed 30 pounds when I was 5. First of all, to address the weight
> issues, have you tried giving her high-calorie shake-type drinks such
> as Pediasure? This was helpful for me and although I did not like to
> eat much at that age, I really enjoyed the drinks (especially the
> chocolate!) and was able to reach 40 pounds by the time I was 8. (I
> think by the time I was 9.5 I was about 45 or 50 pounds).
> I have a few more questions that might help me get a better handle on
> what is going on. You mention that your daughter will chew a piece of
> food for minutes on end before swallowing. How much does she typically
> end up eating? Does she ever complain about being hungry? Does her
> appetite tend to fluctuate with her eating a lot one day and not much
> the next, or is she always eating very little? Does she talk about
> enjoying food? Do certain food textures bother her or make her gag?
> It is possible that she is not eating much and/or eating slowly
> because she isn't experiencing normal hunger patterns, or may have an
> impaired sense of taste which might mean she doesn't enjoy her food
> very much. There are medical conditions that could cause these issues,
> many of which are treatable with medications. Have her hormone levels
> been checked with a blood test? Imbalances in certain hormones, like
> those associated with optic nerve hypoplasia, can mess with appetite,
> eating and weight gain. You may have already ruled these things out,
> but if you haven't it would be a good time to check and make sure
> everything is on track medically.
> I would recommend getting the opinion of a pediatrician about whether
> the issues are medical (i.e. whether she is unable to feel when she
> needs to use the toilet) or if this is psychological/behavioral. You
> don't say much about what her situation was like when she was in
> Thailand before you adopted her and you might not know much yourself,
> but things that happened during those formative years could have a
> huge impact on her eating and toileting behavior today. For example,
> it's possible that she has an eating disorder. A child psychologist
> should be able to pick up from one or two sessions whether there is
> something deeper going on psychologically. They might also have good
> concrete suggestions for you about how you can manage things from a
> behavioral standpoint.
> What kinds of "rewards" is she asking you for? I agree that she
> shouldn't need rewards to do basic life activities. At her age and
> with her intelligence, she is ready to learn through "natural
> consequences" and a little bit of discipline might be enough to
> discourage her from manipulating you. Natural consequences means if
> she takes an hour to get dressed for an outing and doesn't get up
> early enough to allow for that much time, instead of bailing her out,
> you wait for her to finish getting dressed and then the outing doesn't
> happen. She can choose to get up earlier, hurry her dressing along or
> she has the unwanted consequence of missing out. Or maybe if she wets
> her pants, she can't sit on the furniture, or she loses her TV or
> other privileges. Again, you want to make sure first that she is
> actually able to control her bladder, but if she clearly is able to
> take herself to the toilet at least some of the time when she needs
> to, then she needs to understand that if she willfully misbehaves
> there will be unwanted consequences. She is probably also old enough
> to learn about the health effects of her behavior, i.e. if she
> continues to not eat that she could end up in the hospital. Not to
> completely terrify her, but she should be aware of what control she
> does have over her health. In my own case gaining weight had a
> built-in reward, because I was told that when I reached 40 pounds I
> could sit in the car without a carseat like a big kid. I became very
> motivated to eat as much as I could and drink my Pediasure in order to
> reach that goal of not having a carseat anymore. I guess this was a
> reward, but it was a naturally occurring one.
> She may even be old enough to sit down with you and get involved in
> deciding what will happen if she does what she is supposed to do and
> what will happen if she doesn't. You can write it down, display it in
> Braille and print for both of your reference, and refer to it often.
> What kind of school situation is she in?
> I hope at least some of this is helpful. If you can provide a little
> more detail I may be able to give more specific recommendations.
> Best,
> Arielle
>
> On 8/30/12, Bernadette Jacobs <bernienfb75 at gmail.com> wrote:
> > 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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