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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Please note: I want to include lots of pictures of children with Hydranencephaly clearly seeing. Not all pictures will be of the child whose story they’re next to.
When we show him something, sometimes his eyes will move fast and then look up to the side. Our vision teacher said that this is because he is trying to focus on it and it is a little hard at times. He will often look at something, then look up and then focus back on what he is looking at. To encourage his vision we have placed bright lights (rope lights) in his "Little Room" as well as bought black and white picture books and made some cards up with different coloured patterns as well as black and white patterns as we were told that black and white it the easiest for him to see. we have also learnt to put things very close to him if we want him to look at it. At school his teacher has made an open box which is black inside and has a fluorescent light in it. He looks in and it has a lot of things that glow with the light as well as things to feel. We notice that he can see this very well and this shows us how important it is to remove and "distractions" if we really want him to see something well. Tyson (8/2/02-3/27/03): When they
explained that if Tyson was able to (I believe he could) he would see
Jonathan, age 2 1/2: The only
experience we have had with vision for Jonathan is when the therapist brought a
light box to see if he would react to the colors. He reacted to red by actually
looking at it. Yellow and green he paid no attention to. White pu Chris, (9/23/88-2/1/03): Chris could
see some things. Of course, I will never know just how much. He would search for
light. IE: While coming in from the sunlight to dark, he arched his body as if
to say "Where did that light go?" He would not sleep in the
Jason, (8/16/01-1/12/05) We were told, like so many in this group, that Jason would be blind. Not entirely true! He did follow me with his eyes and loved looking at Althea's beautiful face. I have a great photo which I can send you if you'd like, of Jason staring lovingly at his "Little Althea Doll" which she bought for him. He's even trying to reach for his "new girlfriend". (Note: all Jason's pictures were lost when his home was destroyed by Hurricane Katrina) Once we got in to an ophthalmologist, he told us that the optic nerve was very pale and it was not certain whether Jason could see or not. BUT, he saw no harm in prescribing glasses for Jason. He was very encouraging. One of the effects of Jason's meningitis was that his pupils were of a very different size. One was very dilated and the other very constructed. After Jason started wearing his glasses, the two pupils became the same size! He did not always react to light but sometime he did, with the pupils constricting accordingly. We had several visits from a very nice lady with the MS Deaf Blind project. She explained that children like Jason would benefit from visual exercises involving only two colors at a time. Preferably, black and either red or yellow. She also told us that sometimes it was best to work on only one sense at a time. Hearing in one session, vision in another. She said children like Jason could get too much input from too many directions and would just shut down rather than absorb it all. Of course, there are times when we like to tickle all the senses too, which is ok. Just watch out for over stimulation. We also learned that a little movement, and something sparkly, is good for visual exercises. Althea rigged up a box with a pieces of black cloth for a background. She found a glittery little bee that was black, white and yellow. She suspended that from the top of the box and put a small fan under it, along with a little light. The light made the bee sparkle and the fan moved it around. She would sit Jason in front of this box for about 20 minutes at a time and called it "doing his homework". Another good combination for light and movement is mylar pompoms illuminated by a light. Kyra, age 7 months: After the CVI video conference the lady flew down from Anchorage and met us first at the PT and ten at home. We chose red for Kyra to look at and she gave me "toys" to use. Luckily, my husband as a photographer has black velvet and felt backgrounds (he just built one which looks like a puppet show "box" with 3 sides for a bridal fair tomorrow). We'll sit Kyra in front of it for short periods of time, when it's quiet in the house. There will be simple, red, shiny objects on it. This week my husband had Kyra on the dining table (yes, still) and se was seeing if Kyra would look at him or not. She was just looking "everywhere" so he said, "I don't think she can see me." I grabbed a white sheet (the closest thing I could find) and stretched out behind him. Kyra immediately started to gaze at his face. She looks at the eyebrows, the hair, the lips; she doesn't make eye contact for long periods of time, but she does get information. Now that Valentine's Day is gone, the heart stuff is very cheap. We got some strings with hologram-hearts on it. Kind of like the door-thingies (curtains) from the 70s. Rachel, age 11, Rachel has CVI but is good at tracking objects and people, especially boys. Brennan, age 3: When I took Brennan
to the ophthalmologist I mentioned that I thought he might have CVI Matthew (6/4/99-4/9/04): Matthew was legally blind with cortical blindness, but I know he could see, maybe not all the time but he could.
She turned away from light; ie a light box. And she was a little monkey, if she knew we wanted her to do something she wouldn't do it, like look at something on the light box. As long as an adult was looking at her she sat there and ignored it. As soon as the adults would go on to something else or start talking you could see out of the corner of your eye that she was looking at the light box and reaching for whatever was on it, as soon as I looked at her she's stop. When she was 8 or 9, the doctor that had told me she had no optic nerve now said she could see. Not well; 20/1200 but still it was vision. The vision specialist agreed that she had some vision but not enough (yet) for glasses. I was actually relieved as she was such a little monkey I knew she'd never keep them on. At first I wasn't too sure she could actually see but one night my husband had put up the Christmas tree while Kayda was out of the room. Without saying anything to her about it I took her back in to the living room. She looked over at the tree, looked away and looked back at it and didn't stop. I knew she could see. Like the other kids she didn't see all the time and it came and went, but heaven help you if you stood in front of the tv when our local weatherman or Tim Allen were on. She'd peer around you to see them. Other pages in this section:
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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to register all that he can see. Some days Noah will look at a lot of thing and
other days it seems like he sees nothing at all. We have discovered that he
likes red in particular as he looks at something red a lot more than anything
else. 
upside
down and backwards. He didn't have the part of brain to make things the way we
see. So I made him a bright checkered quilt. That way no matter how he saw
things it still looked the same. He loved that blanket. It brought him a lot of
comfort. 
t
him in the worst seizure I have ever seen. He is extremely fussy is the sun
comes thru his window in the morning. We have to keep the curtains closed until
around 10:00am EST. The doctors do not feel he can see anything other than
light. He does not like to sleep in the dark at night. We leave a little light
on by is bed and he is content. I guess he needs the light. It just can't be
bright. 
dark.
Lights were on at all times. He squinted a lot while outside. He wore his cool
sunglasses when he was out. 
(learned that from the hydran website), but she never actually confirmed it
(yet). She said there isn't a prescription problem, so he doesn't need glasses.
And that he could see, but she wasn't sure if he was actually focusing in or
concentrating on what he's looking at. She also said that the optic nerve in his
right eye is bigger than the one in his left. The second time I took him to see
her she said he is far-sighted. (I still have no clue how she could figure all
this out!) Brennan will look at things peripherally too. He will tilt his head
to get a closer view of something. He likes the colors red and white and black
and white. He enjoys looking at mylar things (such as balloons or pom poms) at a
distance. He tracks better horizontally. He will also use his head to knock down
soft blocks or to touch/move musical toys and such. It's very interesting how
keen we become to these things. 
Chrissy,
age 4: I read the post Ildi, about helping Kyra's vision to actually get
better and I just wanted to say I absolutely believe this is possible!! This is
what we did with Chrissy, from the time she was 8 weeks old. She has had vision
therapy from the very start and it has improved her vision and her
interpretation of what she sees tremendously!!! She started with black
backgrounds and bright colors on the background just like you described. Then
she progressed to a light box that has helped her see all kinds of different
objects. We read to her and hold the book close to her face and she looks at
each page. We have to be slow and let her take her time to see things. You can't
move it away fast as they take longer to process things. Also wanted to note
that sometimes they may hold their head in a different position to see better.
We think Chrissy has better
peripheral
vision, because when she really wants to see something she will "tilt" her head
down and to the right so that she can look intently at it. Her vision therapist
had to tell all her other teachers to NOT put her head up (everyone tended to
put her head up and back into her headrest, thinking it had just fallen down)
because she was trying her best to see and WANTED her head in the lowered
position. She lowers her head and looks to see where her switches have been
placed on her tray and then will raise her head back up and puts her hand right
on the switch. It is amazing. Chrissy's vision diagnosis is ONH (Optical nerve
Hypoplasia) and CVI (Cortical Visual Impairment). Her ophthalmologist fills out
her annual vision report for the school district and she always tells me the
same thing-that she puts "Legally Blind" on the paperwork to get Chrissy all the
vision services she needs, but to never doubt that she DOES see, we just don't
know now much she processes. I believe she processes a lot! So, keep working
with these babies everyone!!!!
Kayda
(12/2/88-6/23/00) I've been reading people's stories about their children's
vision and seeing things that Kayda did too. Maybe there's a special
"hydran" visual pattern. At first I was told that Kayda had no optic nerve and
therefore was totally blind. The first time she was tested by the vision teacher
at school (grade 1) she took notice when the lady turned the light out in a
windowless room. "Spastic reflex" said the vision teacher-she knew all about
"kids like Kayda". Then every time she turned the light on or off, Kayda clearly
reacted "Oh..." she said "Kayda can see light and dark" duh!!!!!! Like many of
the kids Kayda clearly didn't like bright sunlight but wouldn't keep sunglasses
on. After that first test we knew Kayda responded to light and dark. A year
later she was tested by the same lady and lo and behold Kayda could see: not a
lot, but like many of the kids she was best off to one side and she saw a
lighted object in a dark room best. It helped us situate the tv or her so she
could see it the best. We discovered she could see up to about 4 feet away.