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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 |
Sensory
Stimulation As most of our children are visually impaired and have limited understanding of speech, it’s a good idea to come up with “cues” to indicate to your child who is talking to him/her, what time of day it is, or what activity is coming next.
At bedtime, I always played a particular version of Pachelbel’s Canon with ocean sounds. As an example of how meaningful this was to her; After she had been with us just over a month we took her on holidays to visit relatives in the Interior of the province. The trip took all day and we arrived around dinnertime. Kayda was stony faced and looked totally out of it. None of my family that we were visiting had ever met her or had previous exposure to someone with her degree of disability so I wanted her to make a good impression. I started to get her ready for bed in the living room, as that was where a tape player was. I put on her bedtime tape, and low and behold, she gave a big smile. From that minute on she was relaxed and responsive and loved our trip. That was only after a few weeks of hearing a particular music. It also helps to have specific “cues” for different people your child might meet. This can be as simple as just saying hello in a particular way. One of her former teachers always greeted her with a particular song. Others had her touch their watch or their hair or glasses. Anything you can do to help your child be more aware and feel more secure about themselves and what is happening around them is good. Comments from
parents about activities their children like: Noah – 2 ½ years: Noah has some
hanging toys, which I have made up for him myself. It just has pegs on
Another toy, which Noah loves, is a play mat that has different textures and sounds on it. One of the parts is a flap that makes ‘crinkly’ sounds – whenever I lay him on it he knows that moving his legs will knock this part to make the sound and he gets very animated and excited. He also loves the Fisher Price Crawl Along Drum Roll. It is supposed to encourage children to crawl, but we just put it next to Noah and whenever he knocks it it lights up and plays music. It is great for when he is having time lying on the floor – his eyes get very big every time he knocks it! He loves any toys that make sounds or play music and light up, but we are finding toys that he can do on his own more like the ones we mentioned (and the little room) are best as he doesn’t have to rely on us to help him with it.
Emily, age 5: Emily likes any musical toy. She has a switch toy with a bumpy yellow surface, which vibrates when she touches it. Yellow is her favorite color. Also, hanging on her bedposts are 2 "pull" toys. They are all scrunched up, and you pull them down to play a song. As the song is playing, it scrunches back up. We play them every morning when she wakes up, and it really makes her smile. Emily also gets a lot of hand painting activity with her therapist. They use rice, coconut, raisins, whipped cream; all different kinds of textures, and she loves it. Megan, age 7, Megan does this (eye gazing to make choices) very well. We started off by having 2 objects of which see knew ( teddy.......Shoe ) and asked her to look at teddy and she did, then asked her to look at the shoe again she did. We then changed objects and did again and she did. She can now choose which things she wants as she will look at them and then fix on to the thing she wants. Today we have been reading. She has a book which has magnetic animals that fix to the page as the story goes on and I show her the animals and ask her which one it is and she focuses on it and we put it on the page, great fun. Also you can make things. I have made her some great toys out of scraps and things. Great one when she is on the floor. Big cardboard box covered in hologram paper turned on its side and hang all sorts of this inside bells, pretty Christmas baubles. I lay her on her side and she will reach out for them. That was an idea I got from her preschool teacher who bought a small one for the table so just made a bigger one. Round about made out of a mug holder. Lamp shade without cover attached and hang bells. Hologram cards with bells on the end she loves it. Megan favourite toy is her rain maker would not be without them 5 in this house. She loves them when she is sitting in her arm chair we put them under her feet and she kicks them off the chair wonderful noise. She will do it again and again and squeak with laughter. Brennan, age 2: He loves the
Playskool Tummy Time Picture Show that he got for Xmas from Santa :-) It's great
for when he's on his tummy and working on his head lifting. It was developed to
encourage babies to lift their heads. I will usually put him on his bolster to
encourage him to look up at it. Sometimes we'd try to help him bat his hand over
the large flower petals on the bottom and it lights up the musical screen. Cute
music and can also be removed from it's base. For older kids they can be held
sitting and able to see the curte little light show. Works good at night in a
dimly lit room. To see a picture:
http://www.toysrus.co.uk/Product.aspx/BruHome/BruBabyToys/BruBabyToysBirth/BruBabyToysBirthActivity/096849
Another toy that's great is the one he
got from his OT for Xmas. It's made by Sassy called Fascination Station. It's
like a little Ferris wheel with spin toys and a suction cup base so you can
place it on any surface. We put it on his sitting table and he'll bat at it
himself (intentionally-? or unintentionally) or we'll help him and it'll spin
easily like a Ferris wheel. He seems to enjoy looking at it, it has those great
developmental colors. It can come off of it/s base and also be held as a rattle.
It looks as though he likes it. We do too. This toy can be viewed at:
Ada, age 7, US: I have a Neurosmith by Musini** - it is a great toy. Ada loves it. It sits on the floor and it plays different music and has lights on it. All Ada has to do is move her arm or leg or anything like that. She doesn’t have to touch it - that makes it nice - she gets it going all the time. She will laugh and laugh at it and that makes it go off even more. We also use a lot of Vtech toys. She loves them as well. We also have the snooze Winnie the pooh that she likes. We have a Spinoza bear as well. We put different tapes in it and she likes to snuggle up to it and hear the music. Kaleigh, age 11: Kaleigh has always been the most interested in any of the V-Tech toys that have switches and then make music or sounds. So good for the cause and effect concept. The play gyms that Playschool and any of the other companies have made, we used until she was just too big for them. The "Little Room" has taken their place. Now she is very motivated by te computer books that she operates with a switch. But by far at this point in her life she is the biggest fan of country music and CMT videos on the cable station, and we do position her so that she might see what she can. Unless any one should think she is not aware of what she likes and dislikes and that she cannot control her environment they just need to hear the vocalization when the news is on or when she does not like a particular song. She is very capable of having a temper tantrum if she feels it is her turn to determine what is on TV. Kaleigh has always loved closeness and sound, be it reading, music or even Grandma's singing. Heather, age 3: Heather also can "read a story" to a listener. We have Dr. Seuss' Green Eggs and Ham loaded onto the Macintosh computer. The story will read the page and then stop. Heather at that time must push the mouse button to get the next page to come up and read. She went through the whole book with her vision teacher. She stopped longer than usual on one page that was the color she had shown preference to earlier in the lesson, and on one page she kept trying to click the mouse before it was done. She was also turning her head away which lets me know that she really didn't like that page.
Through the years she had a number of
toys that she liked, mostly "baby" ones to start with. There were the play Of course, as she got older, her favorite things were listening to stories (and she knew if you made her listen to a "baby" one or not) and watching videos. She also grew to love Start Trek Deep Space Nine and would fuss if I forgot to turn it on. She always knew when it would be on. And, she hated commercials. She would fuss and shout during a commercial.
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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Kayda, I used music to cue her to the time of day. We had one song that
indicated that it was time to get up-this changed as she got older. It got so
that she’d just lie stony faced if I forgot to turn on her music. For most of
her years I had a series of songs that got played in the morning to help her
know what we’d be doing. After the “good morning” song (Rise & Shine by Raffi,
and then Rise & Shine (Arky Arky song) as she got older) there would be a song
played if she was taking the bus to school, then a school song or story. During
the summer and when we went to Disneyland her morning cue tape was altered to
reflect the different things we’d be doing. At school, her teachers did the
same.
it
and I have attached it with elastic to a hook in the roof. Off each peg I have
attached something different such as rattles, beads, balls, brushes (like nail
brushes etc) and bells, which are his favourite. Whenever I lay him under it he
goes CRAZY! He kicks his legs so much to make the sounds and is soooo happy and
moves his arms to knock things. 
Chrissy,
age 3: I just wanted to mention something else regarding those pictures of
Chrissy I just posted. In the pictures with the book, you can't make it out but
the book has black and white pictures along with the standard Braille "dots".
You can see how she is concentrating on it. Chrissy will drop her head down and
look at things as close as she can get them. Her therapist mentioned to me that
sometimes kids with visual impairments prefer to keep their heads down and
tilted (like Chrissy in this picture) in order to see better. It isn't always
poor head control that makes them drop their heads down! Chrissy can raise her
head pretty well, when she wants to, but often she will take
this position to "peek" at things on her tray. So new moms, don't get
discouraged-sometimes our babies know what they need to do better than we do!!!!
Also, as for being blind-well, we were told that at the beginning too-but our
last ophthalmology appointment was great, and from the picture of Chrissy
activation the switch, you can tell she is looking right at it. That is how she
activates her switches, she looks to see where it is, then will often reach to
activate. Sometimes she will not even be looking at the switch anymore when she
activates it, but she "remembers" where it is. I hope you guys don't
think I am bragging. I just thought these pictures were awesome, and I could see
from them how much progress we are really making, in slow small steps. 
Kayda,
(12/2/88-6/23/00): Kayda liked a variety of toys. For her first Christmas
with us (age 5) I had a hard time finding toys that were appropriate as she
didn't move or interact at all. I found a couple of Disney toys that could be
activated by "accident" with touch and that lit up and played music. Another one
was motion and voice (noise) activated which she enjoyed. She also got a "Dinoroar"
by Fisher Price. I got it to put under her arm when she was lying down in the
hopes that one day she might catch on to the fact that if you squeezed him (We
called him Bruce) he made a noise. Well, that toy was our miracle toy that
changed Kayda's life. Shortly after Christmas she discovered how to move her
arms so that she could pull Bruce near her to suck on his head. She quickly
started reaching for, touching and chewing on anything that got near her mouth.
And, with many of the toys she had she quickly learned how to do the most
difficult thing on the toy. The toys that were activated by "accident" were no
longer wanted. The Dinoroar in the above picture was Bruce's successor named TC.
He was her teething ring or soother for many years. 
gyms, and various toys you could manipulate. She also enjoyed a keyboard and
had
quite a few of them. By the time she was about 8 she decided she didn't play
with "baby" toys and knew what they were. For her last years the keyboard was
really the only toy she would play with. She also loved things with textures.
The kids in her class at school made several books for her where they made up
stories and did pictures to go with the stories that had a variety of things for
her to feel like rice, seeds, etc. She loved those and felt it was her
responsibility to take all of them OFF the pages. 