[blindkid] Blind child and day-care. (Was Hello)

Mon Jan 2 15:36:40 UTC 2012

A thought on the word "manipulation"--in regular English, this word 
has a negative connotation--to be manipulated is not a good 
thing.  But in doctor-PT-OT land, the word simply means to examine or 
move or treat a certain body area with one's hands.

For the kids who have serious movement needs, as mine certainly did 
as a baby, manipulation of their bodies will be a part of physical 
therapy.  For example, in order to get the "movement idea" of rolling 
over into my daughter's body, the therapists taught us to begin the 
turn by moving the bottom half of her body, following how the body 
would do this movement for itself. I am quite sure that if Serena had 
not been "manipulated" in this way, she may never have rolled over, 
given her way too early birth and her hospital experiences (tied down 
via IV lines for months, etc.).  Again I believe the important thing 
is to get these activities accomplished in a manner that gives the 
child the movement information necessary without unduly upsetting him or her.

So I just think we need to remember that some babies--especially the 
micro premies and kids whose eye conditions are a part of a syndrome 
that affects other body systems--have legitimate therapeutic movement 
needs which will include manipulation of their bodies.  That's okay 
and we should not demonize the word "manipulate." These babies also 
have all the needs for love, interaction, encouragement, high 
expectations, etc. outlined below.  These are not mutually exclusive 
and we need to make sure the baby gets all these needs met.

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 09:49 PM 1/1/2012, you wrote:
>Dear Sarah,
>You have had some wonderful advice about organising your little 
>girl's world to make it motivating and interesting. I agree with all 
>that has been suggested. However, I want to encourage you to remove 
>your daughter from that day-care situation as soon as you possibly 
>can. It is extremely unlikely that they are treating her like a 
>bright, inquisitive, competent little girl. I imagine they expect 
>her to be retarded in her development and intellect because, at the 
>moment, she is not behaving like the other children her age.
>
>If you surround her with the sorts of motivating experiences which 
>have been suggested, and you find therapists who begin to treat her 
>like a child who needs motivation and choices, rather than 
>manipulation, then I've no doubt that she'll start to develop and 
>improve dramatically.
>
>However, ten hours a day in a day-care that is not interacting with 
>her in lots of ways for lots of time will result in a very sad, 
>despondent, and perhaps even angry little girl. She is full of needs 
>that she doesn't yet know how to meet ... the need to move, to know, 
>to interact, to understand, to relate, to succeed. Yet, she doesn't 
>know how or believe that she can. I'm not saying this to upset you, 
>I'm sharing your daughter perspective with you.
>
>Several years ago I began teaching a 5-year-old, blind girl (we'll 
>call her Katie) who had been put into a prestigious 
>day-care/preschool when she was 18-months old. Her parents worked, 
>and they believed she needed the experience of other children and 
>the help of professionals. even after she had been through two years 
>of the county's programme for blind children her emotional and 
>developmental level were astonishingly low. While Katie also had 
>some other physical issues, her main problem was the lack of 
>stimulation she had received and the way she had been moved and 
>manipulated all her life. When she came to me she moved like a 
>zombie, afraid to put one foot in front of the other. Her hands 
>flopped beside her for she didn't know that life was for her to 
>"take hold of". She had not been taught to dress herself, put on her 
>shoes, or backpack. she didn't know she could search the shelves and 
>choose an activity. She didn't initiate conversation with other 
>children and didn't know how to carry on a conversation if another 
>child spoke to her. she didn't know how to play; to pretend that a 
>ball was chasing her or that a rocking horse was trying to buck her 
>off. She didn't know how to even roll play. She was frightened of 
>stairs, of the sand-box, of slides of jumping of a step...it was as 
>if she was scared of life itself.
>
>she had not reacted to her situation with tantrums and fury, like 
>some children, she had reacted by withdrawing. She had no love of 
>life; in fact, she had the worst case of learned helplessness that I 
>had ever seen in over 20 years of teaching. When she was asked to 
>put on her shoes she would push her foot into the first shoe she 
>touched - whether it was hers or not and irrespective of whether it 
>was a right or left shoe - and would then lean back on one hand 
>while flopping her other hand about on the shoe as if she knew she 
>was supposed to do something, but didn't know what. It was very 
>apparent to me that she had never been properly shown how to do the 
>job. She'd had people grab her hands and do "hand-over-hand" (a 
>largely ineffective method) demonstration. Then she'd been told to 
>repeat the task. But, for a child who hadn't learned to use her 
>hands to manipulate and explore her world, she didn't have the 
>prerequisite skills. but, far worse, she'd been so manipulated and 
>grabbed and moved, she didn't know that she could do it herself. She 
>had no belief that she could actually do things herself. Why try if 
>you know the outcome will be failure? My heart broke for Katie 
>because her problems were not the result of blindness; they were the 
>result of people who didn't know how to interact with a blind baby. 
>No bouncing on someone's lap, no singing and rolling games, no 
>crawling under a pile of cushions. She didn't know how to jump, or 
>run, or climb, chase. She wasn't much interested in food, or smells 
>or stories or pretending. No fun for Katie, no joy of living, no 
>meaning no understanding. Just lying and sitting still and alone in 
>the crowded day-care and then, with no warning and no recognition of 
>the therapists by voice because of the time passed between visits, 
>*grabbing* and *making* and *pulling* and *moving* and *forcing*! 
>Then, with no language to express her misery and fears and 
>loneliness, she was left alone again.
>
>Was this because she she was blind? No, blindness doesn't cause any 
>of these things. It was because of how they interacted with Katie 
>during her long hours at the day-care.
>
>This is not what you want for your little girl. If you can find a 
>family day-care setting where she can have more, small group, 
>interaction this would be better. If you could find one person who 
>might have her in their home while you work that would be even 
>better. Or, perhaps you may need to stay home with her for a year 
>and play with her and love and encourage her into life. If you'd 
>like to contact me and discuss things I'd love to help. Please just 
>email me off list and we'll organise to talk.
>
>Incidentally, Katie is now a wonderfully social little girl who 
>loves life and people. She has made unimaginable progress and is on 
>grade level in most areas though she has areas of delay that we're 
>still working on. But, things could have been so very different for 
>Katie if people had known that the child was normal, she just didn't 
>interact with the world using vision. Katie's problem was the lack 
>of correct information possessed by her parents, therapists and 
>teachers. Blindness, of itself, is not the problem.
>
>I applaud you for reaching out Sarah and I implore you to trust your 
>instincts as a parent. You have a lovely little girl who just needs 
>to learn that she can interact with her world. Please keep in touch 
>and we'll help as best we can.
>
>Warmest regards,
>
>Heather
>
>
>-----Original Message----- From: Sarah Dallis
>Sent: Thursday, December 29, 2011 8:12 PM
>To: blindkid at nfbnet.org
>Subject: [blindkid] Hello
>
>Hi. My daughter, Ellie, is almost 16 months old and completely blind. She
>had a VEP two months ago and it came back inconclusive. She may have had
>her eyes closed or she's completely blind with no light perception. It
>helps me to go ahead and think she's completely blind, I'd rather have the
>surprise then to have to lose an expectation, if that makes any sense.
>Anyway, she has other health issues (septo-optic dysplasia, optic nerve
>hypoplasia, hypo-pit, diabetes insipidus, so on and so forth). Those are
>all back seat drivers to her vision in the sense of development.
>
>She doesn't walk, crawl, or stand. She likes laying on her tummy but more
>for sleep so we're working on her pushing up and reaching for things. She
>can roll.
>
>My husband and I are both active duty Air Force so she goes to daycare
>about 10 hours a day. I'm having problems with my confidence in her daycare
>and therapists. I'm debating on whether or not I should switch my
>daughter's OT and PT. She is always unhappy and crying during therapy. They
>force her hands and body into positions and make her stay there or do
>something. She's not quite 16 months and her PT session lasts 45 minutes.
>What do you all think? She also receives feeding therapy but she's showing
>more progress withth at then she is with OT or PT.
>
>In my signature block the second link is to Ellie's blog if you want to
>read more about her. Thanks for your time and I look forward to hearing
>from you all!
>--
>
>Sarah Dallis
>
>Pampered Chef Consultant
>
>Order 24/7 Online: http://www.pamperedchef.biz/sarahdallis
>
>Mom to Ellie: http://elliesgrace.blogspot.com
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