WOW that is AMAZING!! Congrats!! Hopefully it wasn't a one time thing and continues! That's fantastic! 
glad to hear she's making progress
glad to hear she's making progress
Raising Chickens and Special Needs Kids
- Thread starter Blooie
- Start date
This is an awesome thing to read! They get it after a while. It's great that you all watched and let her to do it herself. I remember how hard that was. When Richard decided to try something new, or go a different way, I had to keep myself from jumping in to help at times. So wonderful that she is becoming independent physically!
- Thread starter
- #43
I wish I'd seen her do it - Jenny called me right afterwards and told me what happened. We're pretty good about letting her get into things, explore, and push her boundaries. She's never going to get anywhere if she hears "no" or has someone jump in every time she decides to exert her independence. But you're right - it's hard to let go and just let her work it out!
I don't know why we put such emphasis on her walking - and I've felt that way from the beginning. Don't misunderstand me, it's great that she is getting it. She will walk, but it will only be very short distances. If she can go from the living room to the kitchen or from her bedroom to the bathroom, just seeing to her personal needs, I'd be content with that. The reality is that the chair will be her main method of ambulation. Period. What we need to focus on, and where she's sadly far behind, is in other life skills. She doesn't talk yet. She can name anything you put in front of her. She knows all of her colors, her shapes, letters (out of order or in different fonts) and her numbers up to 20, also out of order and wherever she she's them. She's IN there! But she will not communicate. She's 4 years old and doesn't ask for anything, doesn't respond to questions like "What's your name?" "How old are you?" She is so developmentally delayed and that's where I think the focus should be.
I tried to explain it to her therapist and to Jenny this way..... If you call a business for assistance, do you know if the person on the other end of the line is in a wheelchair? Nope. All you care about is if that person understands your problem, can converse with you about it, and can help resolve it. It's not what's below her waist that's going to help her be successful in life, it's what's between her ears. But so far I'm beating a dead horse. So when I have her here, I push. She doesn't get the milk, the cookie, the lunch or breakfast until she asks for it. She knows the words for those things. Granted it's still only one word, but it's something. She has said, "love you" but she's responding to a hug or kiss with the phrase she hears in association with that action, and even it comes out as one word.
When she's finished with breakfast or lunch she says "dishwasher". She gets down from the table and either crawls or walks (holding on to something) to the sink. She opens the dishwasher and tosses her dish in there. Then she goes back for her napkin and says "Trash" and puts her napkin in there. I know she understands perfectly - the lack of communication is so frustrating for all of us, including her.
I don't know why we put such emphasis on her walking - and I've felt that way from the beginning. Don't misunderstand me, it's great that she is getting it. She will walk, but it will only be very short distances. If she can go from the living room to the kitchen or from her bedroom to the bathroom, just seeing to her personal needs, I'd be content with that. The reality is that the chair will be her main method of ambulation. Period. What we need to focus on, and where she's sadly far behind, is in other life skills. She doesn't talk yet. She can name anything you put in front of her. She knows all of her colors, her shapes, letters (out of order or in different fonts) and her numbers up to 20, also out of order and wherever she she's them. She's IN there! But she will not communicate. She's 4 years old and doesn't ask for anything, doesn't respond to questions like "What's your name?" "How old are you?" She is so developmentally delayed and that's where I think the focus should be.
I tried to explain it to her therapist and to Jenny this way..... If you call a business for assistance, do you know if the person on the other end of the line is in a wheelchair? Nope. All you care about is if that person understands your problem, can converse with you about it, and can help resolve it. It's not what's below her waist that's going to help her be successful in life, it's what's between her ears. But so far I'm beating a dead horse. So when I have her here, I push. She doesn't get the milk, the cookie, the lunch or breakfast until she asks for it. She knows the words for those things. Granted it's still only one word, but it's something. She has said, "love you" but she's responding to a hug or kiss with the phrase she hears in association with that action, and even it comes out as one word.
When she's finished with breakfast or lunch she says "dishwasher". She gets down from the table and either crawls or walks (holding on to something) to the sink. She opens the dishwasher and tosses her dish in there. Then she goes back for her napkin and says "Trash" and puts her napkin in there. I know she understands perfectly - the lack of communication is so frustrating for all of us, including her.
I can't remember, does she have a shunt? I'm sure you know if she does, that this is something that needs to be watched. Just sayin.
On the other hand, I have a brother that did exactly what you are describing here. He would just say a few words here and there, then, all of a sudden, he started to talk at the age of 5! Finally .. sentences and all! Pretty different.
There is also a little guy in our church that has some worried parents. He is three, no words..well, lately more, will explain in a min.
Interesting thing he does. He will do syllable words. Uh uh uh.. meaning.. that something that he wants is a three syllable word. I do music in the nursery at church. Once I learned that this is how he makes his own words, I would ask him which song he wanted to sing. Last Sunday it was, uh uh..had the nursery helpers help me think of some songs that were two syllable words. Snowman! As soon as I asked him .. snowman? He jumped up and down with a big grin on his face.
Now he is starting to use words too. But...this is the strangest thing. BIG words! And I mean, big words. His mom had him say some words for me, and they were words that only grown ups usually use. Interesting. Will be interesting to see if he starts making sentences soon. He is in speech therapy. What a love! I always get a love from him.
On the other hand, I have a brother that did exactly what you are describing here. He would just say a few words here and there, then, all of a sudden, he started to talk at the age of 5! Finally .. sentences and all! Pretty different.
There is also a little guy in our church that has some worried parents. He is three, no words..well, lately more, will explain in a min.
Interesting thing he does. He will do syllable words. Uh uh uh.. meaning.. that something that he wants is a three syllable word. I do music in the nursery at church. Once I learned that this is how he makes his own words, I would ask him which song he wanted to sing. Last Sunday it was, uh uh..had the nursery helpers help me think of some songs that were two syllable words. Snowman! As soon as I asked him .. snowman? He jumped up and down with a big grin on his face.
Now he is starting to use words too. But...this is the strangest thing. BIG words! And I mean, big words. His mom had him say some words for me, and they were words that only grown ups usually use. Interesting. Will be interesting to see if he starts making sentences soon. He is in speech therapy. What a love! I always get a love from him.
- Thread starter
- #45
Nope, she doesn't need shunts. Her neurosurgeon at Denver Children's Hospital said that she's one of the lucky 5% and he also said that the longer she goes without them the less likely it is that she'll need them. She does have a little extra fluid in her ventricles but that amount has never changed, so her body is handling the hiccup in the cerebral spinal plumbing beautifully.
What is a shunt? Like a waste bag?
- Thread starter
- #48
Hi FF. For kids born with Spina Bifida, like my Kendra and Cynthia's son Richard, hydrocephalus is a common issue. If you think of the brain and the spinal column as a "plumbing system", and the cerebral spinal fluid as the water, you can see where a break or disruption in the plumbing can cause the water to back up because it doesn't drain and circulate correctly. So the ventricles deep in the brain fill with this fluid - sometimes just a little as in Kendra and Richard's cases, sometimes a lot more.
When there is too much spinal fluid in the ventricles, it presses on the brain and this causes lots of problems with most of these kids. So, sometimes as early as the day after they are born, these kids are taken to the OR where not only are the the holes in their backs closed, shunts are put into their brains as well. These are small catheters that go into the ventricle, come out under the skin covering the skull, traverse (still under the skin) down the neck and into the chest wall. The shunts drain that excess fluid into the stomach. Shunts are permanent but the kids will need revision surgeries throughout their lives. Shunts can block, stop functioning, and are outgrown from time to time.
When we learned that Kendra would be born with Spina Bifida, my days were filled with research. The simplest explanation of shunting was found here:
I'm glad you asked about this! The more people are aware of Spina Bifida, the easier life becomes on our kids!
When there is too much spinal fluid in the ventricles, it presses on the brain and this causes lots of problems with most of these kids. So, sometimes as early as the day after they are born, these kids are taken to the OR where not only are the the holes in their backs closed, shunts are put into their brains as well. These are small catheters that go into the ventricle, come out under the skin covering the skull, traverse (still under the skin) down the neck and into the chest wall. The shunts drain that excess fluid into the stomach. Shunts are permanent but the kids will need revision surgeries throughout their lives. Shunts can block, stop functioning, and are outgrown from time to time.
When we learned that Kendra would be born with Spina Bifida, my days were filled with research. The simplest explanation of shunting was found here:
I'm glad you asked about this! The more people are aware of Spina Bifida, the easier life becomes on our kids!
Social Awareness..a biggy we worked on back in the 80's!
We have a son in law that has a shunt. He's had a non cancer tumor removed from his brain, but now needs a shunt. He's had a lot of problems with it. :/
We have a son in law that has a shunt. He's had a non cancer tumor removed from his brain, but now needs a shunt. He's had a lot of problems with it. :/
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