Contrary to what Drs are likely to tell you, your child with Hydranencephaly can communicate.  But…. not with the language most of us know. Someone explained it to me as sort of being like being dumped on an alien planet with this little being and then having to learn his/her language rather than teaching him/her yours.  For children with Hydranencephaly communication is likely to be quite subtle especially at first. It will take observation and patience. 

The following are examples of ways our children communicate as stated by their parents:

Elizabeth, age 9, is on a ventilator, has a tracheostomy and can make no sounds with her voice. When she wants attention she moves in such a way that her ventilator alarms go off. As soon as you say “It’s ok Elizabeth” or go over to her she stops.

She does this when her mom comes in from being out and hasn’t said hello right away,

She has also figured out how to pull several parts of the tubing attached to her apart so that alarms go off and she gets the attention she wants.

 When you stand near her, if you’re someone she likes, she’ll reach out her hand and rest it on your arm.

Update 2003: The part about her not making any sounds...well she can now "talk"
around her trach...she has gained in many ways. she responds to smells like lotions, candles ect, She loves flavored lip gloss and she smiles a lot more.. She will set off her alarms if one of the other girls cries and stop when we go to the who is crying. She moves her arm now to set off her pound puppy's barking.

Jason, who died at the age of 10 1/2 had a shunt malfunction at the age of 3 and since then cannot do anything but: When he doesn’t want the OT or PT or school workers to touch him he goes into a seizure.

Even though Jason doesn't cry we still know when he is upset. His face gets red splotches everywhere until his entire face becomes beet red. That's how we found out about his two broken legs.

Emily, age 5: When she is put down for a little while, whether it's in her "chair" or on her blanket on the floor, when she's had enough, she whines loudly. She will continue to get louder and arch herself until she is picked up. As soon as she is picked up, she gives a great big smile.

Also, when she is extra hungry she will stick her tongue in and out. She will also tighten her lips and make a face if she doesn't like her food. Although there are few things she doesn't like to eat. When she's full, she'll let the last mouthful completely slide out and down her face.

We get the biggest smiles from her every morning when we go into her room, open the shade, and she hears our voices. If she doesn't smile, it's a clear sign she is sick. She also does the "concentrating" thing with the therapists. The only thing different is she doesn't kick her legs and move her arms. If Emily is extra simulated to laugh, her right leg will bend up rally fast. It's soooo cute.

Seeing Em wake in the morning is one of my biggest joys. Whenever I'm working from home, I always ask Kathy to let  me know when Em is awake so I can go see her first thing.


Daniel age 8: also does this chewing thing when he has gas and needs venting. He also does this when he is fed (bolus) Its funny how some of our children are so similar.

 When he has to poop he turns red and stiffens up his arms.
Daniel has a little wrinkle in his forehead for an itchy nose.
He will cry with pretty extreme pain. But he smiles most of the time.
The nurse the other day said that when she mentioned brushing his teeth he turned the other way so quick.
He is able to activate his with tape player with his head. I am positive he knows he is doing it.
Of course when we are not home for a while his heart rate goes high and won’t settle until we are all back home.

Update: If I have been holding him on my lap for a while and then I put him down he has this really big frown on his face.  He doesn’t warm up to most people at first. But after 3 or so times he starts smiling. He does activate a switch toy with an obnoxious barking dog on it. He does it with his head on a pillow by turning it to the side. I actually use the side that he doesn’t like to turn to so I know he knows.

Noah age 2 ½ years: If he doesn’t like something he will ALWAYS arch his back and yell out like he is cross.   For example, if he is on the floor kicking and he is getting tired and/or has had enough he will arch and yell out.  As soon as I pick him up he stops and relaxes.  If someone is giving him a cuddle and he doesn’t want to be held, but wants to be on the floor he will arch.  ALWAYS in his car seat he arches - especially if the sun is in his eyes.  As soon as you get him out he stops and relaxes and often gives us a cheeky smile as he has gotten what he wanted!

Every morning when he wakes he 'calls out'.  Whenever he vocalizes he makes an 'aaaah' sound.  I hear this in the morning and go into his room and put up his blind and every morning it is exactly the same, unless he isn’t feeling well.  I say 'hi Noah - how are you this morning' and he gives me the biggest smile and makes sounds back to me.  When we talk to him (usually only Aaron or myself or someone he is familiar with) he will 'talk' back making the 'aaaah' sound. 

His way of letting us know he is really happy is always making these sounds, smiling and always kicking - no matter where he is. If he is happy he will kick and move his arms. 

You know that he is really listening to you by his eyes.  They get really still and really big, and then he moves them around like he is concentrating on what you are saying to him.  Our PT and OT have both commented on how well he 'stills and listens'.

Megan, age 7 does this also  with the arching her back when she has had  enough of something and shouts out. Also every night when she wants to go to bed she will push her head so hard on your arm  and you say to her do you want to go to bed and she laughs and smiles  so off we go and she really chuckles when you lay her in the bed and this she does every night.

Heather, age 3: Heather has excelled in the art of non-verbal communication.  Even the un-initiated can understand, "You're not putting that in my mouth" when Heather wishes it to be known.  She clamps her lips together, twists her mouth, and then turns her head away from you.  When she is starting to get hungry she will groan a little.  As she gets more hungry, she will put her hand up toward her mouth.  If you've waited entirely too long to feed her, she will bite her hand and scream bloody murder until you put something else into her mouth (like food.)  If Heather thinks you're not paying attention when you feed her, she will very likely reach out and try to grab your hand that is holding her bottle.  She also likes to grab the spoon (or the hand that is holding it) and try to direct it toward her mouth.

She has a baby sister Elizabeth.  On a number of occasions they have been fussing separately, but when I put them together, Heather reaches out and feels Elizabeth, and Elizabeth reaches back and feels Heather.  They both get quiet at the same time.

One of Heather's best communication devices is the snuggle.  You can ask anyone who has held her...her snuggle can make you feel like the most important person in the world.    

Kayda, who died at the age of 11 1/2: Her eyes were what were the most communicative. From looking at her eyes I could tell if she was recognizing something or listening to something. I think her eyes would stop flickering.

If she didn’t like the story she was listening to or the TV show she was watching she would fuss and yell. As soon as you put on what she wanted she would be quiet.

She knew what time her favorite show (Star Trek DS9) came on and would fuss if it wasn’t turned on for her. It took me a while to clue into this. I’d look at my watch and say “Oh you want your show on”. I’d turn it on, and she’d be quiet.

For several years she had 2 Big Macks (switches that talk when pushed) on her tray. She usually activated the switch on the left the most, but if she didn’t like what it said (she especially didn’t like it when her teacher put a message in French on it) she would reach her left hand over to the right to push the other switch.

Even when she first came to live with us and was mostly unresponsive, when ever we’d come home after being out with her she would get a big smile on her face and relax right away.

One time we took her on holidays with us, and every time we took her outside she’d start to fuss. Once we took her back inside and had her lying on the couch listening to stories as she did at home, she would relax.

When she was very sick, or had come near dying, she would make this high-pitched whine unless I was with her. I usually had to hold her. She would start to cry if I even moved and she thought I was going to put her down.

She hated having her hair brushed when she wasn’t feeling well. It was the only time just about that she would ever cry.

During her last couple of years she would only sleep if she had her husky dog under her left arm and her bunny under her right. If either was missing or not in the “right” arm she would not sleep. I tested this many times, always with the same result.

She would only sleep listening to a story not music. Again, we tested it numerous times.

 If you put on a book that had more than one tape she would stay awake to listen to the whole book.

 If she didn’t want a particular toy or stuffed animal you’d given her she’d push or toss it onto the floor.

Dillion, age 2: Dillion communicates by smiling when he is happy. He follows things with his eyes, loves to listen to music, when he is hungry he will cry until you put something in his mouth and when he is full he spits it out and lets if run down his face. When his big sister or brother are around he will play with them by holding their hand, reaching for them or kicking his legs and waving his arms to let them know he is happy and when he is tired  of playing he starts crying. He also knows how to get anyone to pick him up and he is great to snuggle with.

Joshua, age 5: Josh does the eye thing when he is listening; he also loves the phone he shouts when you put the phone to his ear. Josh has a dummy (pacifier) for bed & I know with the noises he makes if he has lost it, he also shouts when he wakes, different sounds for different things. You just learn what he wants.

Ryan, who died at the age of 12: If he has a bellyache and needs to burp he does this chewing thing with his mouth, it's just like you or I would do when eating something. It's a continuous chewing motion.

When Ryan is hungry he starts to move his tongue in and out of his mouth.

When there is a lot of chaos or Ryan wants to be left alone he will stiffen out. He actually is doing that as I speak. I was holding him and he started to have a tantrum, I put him on the floor and he is as happy as can be.

When Ryan is going to vomit he also does a chewing motion with his mouth. Very similar to the belly ache, but when he needs or is going to vomit he smacks his mouth together and it's more of a non-stop motion.

Ryan adores my dad, if my dad has any contact with Ryan or if we speak to him about his grandpa he WILL NOT sleep. Grandpa is only allowed a couple visits a week. Ryan will actually lie in bed all night until he sees his grandpa, after they have visited a short time Ryan will then fall asleep.

Ryan WILL NOT sleep when he is hungry. He will lay in bed wide-awake until he is fed. With night pump feedings he sleeps much better.

This is silly, more body language I think. But when Ryan is going to have a bowel movement he gets very quiet. His breathing settles down but he is tense in the arms and he gets goose bumps on his legs. Within 2-5 minutes he will go. I picked up on this little trick some year ago. People are amazed when I am on the other side of the room and will say, oh he is going to poop his pants and within 5 minutes he does. I alsohave found knowing this has helped when we may be in a certain place, if I can distract him he will delay this process until we can get somewhere.

When Ryan is having discomfort, his breathing becomes very rapid and he clutches his fists together very tightly. After readjusting he settles right down. He also is able to cry, Ryan feels pain. The trick is trying to find where the pain or discomfort is but he is able to communicate something is not right.

When Ryan likes something or is experiencing some type of pleasure he will smile, laugh, and scream.

Ryan also jabbers A LOT; he does not like people to over speak him. A good example may be when Eric and I are sitting here talking, Ryan will start to jabber and if we are speaking louder then he is Ryan gets louder and louder. There are times that I have to actually tell him to settle down.

Ryan use to grind his teeth when he was in pain or sick but THANK God he stopped doing that.

Leo, age 12, Leo smiles a lot so I know he's happy sometimes makes happy noises, he also make mad noises and cries when unhappy.

As you can see from these examples our children are very good at communicating. It is us who need to learn to understand what they’re trying to “say”. Sometimes, when I’d finally catch on to what Kayda wanted I’d feel so dumb. I’m sure she wondered how on earth she’d gotten stuck with such a dense mom.

Other pages in this section
Personal Dictionary
Communication Links
It Takes Two to Talk