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

Fri Aug 31 03:14:57 UTC 2012

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
>> >>>>_______________________________________________
>> >>>>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/carol.joyce.castellano%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/arielle71%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/bernienfb75%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/arielle71%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/jyanez112%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/arielle71%40gmail.com
>