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

Fri Aug 31 03:59:25 UTC 2012

ok thanks. they just keep saying that shes under weight due to being a
premee. she has never past that 10% tile.

On Thu, Aug 30, 2012 at 8:14 PM, Arielle Silverman <arielle71 at gmail.com>wrote:

> Hi Julie,
> The condition I mentioned is optic nerve hypoplasia (ONH). It is not
> related to blindness from premature birth.
> Is your pediatrician concerned about her weight? If she's eating
> normally and growing, she might just be a skinny kid. If he's
> concerned, though, it would be worth doing a basic blood test to check
> for common issues like hyperthyroidism that could cause weight loss.
> In my own case my low weight is not related to my blindness or any
> particular medical condition. I think I just have a small stomach and
> though I love food, I can't eat that much at any one time.
> Arielle
>
> On 8/30/12, Julie Yanez <jyanez112 at gmail.com> wrote:
> > 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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