Post by Amy Lombardi on Mar 31, 2009 9:28:42 GMT -5
Subject: What to do when speech fades?
Name: Deborah
Date Posted: Oct 4, 08 - 11:48 AM
Email: Click here to Email
Message: After a recent series of seizures, my son has lost the ability to speak. There has been a noticable decline since he was 14. He tries so desperately but even I am unable to understand 95% of what he is saying.
My question is: How do you communicate with your child once you can't understand them? How do you help them communicate their wants and desires?
Deborah
Name: Darlene Royalty
Date Posted: Oct 4, 08 - 6:49 PM
Email: Click here to Email
Message: That is a very good question. I found myself always asking yes and no questions of my three girls. I would listen to them rattle off their fast speech and try to catch one word that might make sense to me. I found myself thinking of them as babies again and how we would try to understand them when they were little and do the best we could. When we saw them get upset because we could understand them we tried to pasify them as best we could. It will get worst. There will come a time when they won't talk at all.
Sarah will be 23 tomorrow and we sang "Happy Birthday" and it brought a smile to my face when I could only understand her say "birthday". But she had such a smile on her face, my heart was so full of joy and saddness. Her twin sister Sandy is not here to sing with her. Happy birthday Sandy and Sarah, I love you, mommy.
I am sure this does not help much, but it is all I can share with you. Good luck.
Darlene
Name: Dawn Sorenson
Date Posted: Oct 5, 08 - 8:50 AM
Message: Darlene,
Happy Birthday Sarah! I hope your day is beautiful. I can only imagine the birthday party Sandy is getting in Heaven!
Name: katarina Calderon
Date Posted: Oct 5, 08 - 9:00 AM
Email: Click here to Email
Message: Have you tried some kind of voice communication aid? There are many different kinds out there, some very basic. I don't know if this is a skill your child has previously mastered or is capable of mastering now?
My daughter had one of these devices that she practiced on at school.
She never did lose her speech, she died of status epilepticus long before her mobility or speech were totally comprised.
Good luck.
Name: peg davis
Date Posted: Oct 6, 08 - 12:29 AM
Email: Click here to Email
Message: hello! my 3 adult children have not talk for years--i found it alot easier when they no longer had speech than when they tried so hard to speak--Holly is 30 and Hannah is 27 and what i do now is that i know them so well i know what they want--they haven't changed over the years of who and what they want--i get this question all the time--how do i know what they want--when watching a movie i take turns with their favorites when they were younger--i pick clothes that are their favorite color that they wear everyday--
very rare do they get a word out that i know now--it was so difficult trying to figure out what they were saying--i find it just easier now without trying to figure out the words--Peg
Name: Nancy Peterson
Date Posted: Oct 8, 08 - 2:36 PM
Email: Click here to Email
Message: Deborah,
This is a really tough stage. For us, it went on for a very long time. In the early years we tried to have David say 1 word at a time. That helped. As it progressed, we asked him to slow down. That worked for awhile. Thankfully he was patient and would repeat over and over. As Darlene suggested, try to get one or two words and then ask questions. Hang in there, I know how hard this is, even though we know some day it will be gone for good going through it is very hard. Just one of the parts of the disease that make us Batty!
David's last word was "Dad". Now how fair is that?!
Good luck, Nancy
Name: jb
Date Posted: Nov 4, 08 - 2:52 PM
Message: it does come to just doing the things you know they
like saying to them things they like we play alot of
music and sometimes a word will come out i think it
makes my son feel connected that hes a part of something anything that gets a smile play on that
and i use distraction when i cant figure it out my
son is 17 but we sing every preschool kindergarden
song because long term memory he can be satisfied
with that and i do get lots of smiles....
Name: Deborah
Date Posted: Oct 4, 08 - 11:48 AM
Email: Click here to Email
Message: After a recent series of seizures, my son has lost the ability to speak. There has been a noticable decline since he was 14. He tries so desperately but even I am unable to understand 95% of what he is saying.
My question is: How do you communicate with your child once you can't understand them? How do you help them communicate their wants and desires?
Deborah
Name: Darlene Royalty
Date Posted: Oct 4, 08 - 6:49 PM
Email: Click here to Email
Message: That is a very good question. I found myself always asking yes and no questions of my three girls. I would listen to them rattle off their fast speech and try to catch one word that might make sense to me. I found myself thinking of them as babies again and how we would try to understand them when they were little and do the best we could. When we saw them get upset because we could understand them we tried to pasify them as best we could. It will get worst. There will come a time when they won't talk at all.
Sarah will be 23 tomorrow and we sang "Happy Birthday" and it brought a smile to my face when I could only understand her say "birthday". But she had such a smile on her face, my heart was so full of joy and saddness. Her twin sister Sandy is not here to sing with her. Happy birthday Sandy and Sarah, I love you, mommy.
I am sure this does not help much, but it is all I can share with you. Good luck.
Darlene
Name: Dawn Sorenson
Date Posted: Oct 5, 08 - 8:50 AM
Message: Darlene,
Happy Birthday Sarah! I hope your day is beautiful. I can only imagine the birthday party Sandy is getting in Heaven!
Name: katarina Calderon
Date Posted: Oct 5, 08 - 9:00 AM
Email: Click here to Email
Message: Have you tried some kind of voice communication aid? There are many different kinds out there, some very basic. I don't know if this is a skill your child has previously mastered or is capable of mastering now?
My daughter had one of these devices that she practiced on at school.
She never did lose her speech, she died of status epilepticus long before her mobility or speech were totally comprised.
Good luck.
Name: peg davis
Date Posted: Oct 6, 08 - 12:29 AM
Email: Click here to Email
Message: hello! my 3 adult children have not talk for years--i found it alot easier when they no longer had speech than when they tried so hard to speak--Holly is 30 and Hannah is 27 and what i do now is that i know them so well i know what they want--they haven't changed over the years of who and what they want--i get this question all the time--how do i know what they want--when watching a movie i take turns with their favorites when they were younger--i pick clothes that are their favorite color that they wear everyday--
very rare do they get a word out that i know now--it was so difficult trying to figure out what they were saying--i find it just easier now without trying to figure out the words--Peg
Name: Nancy Peterson
Date Posted: Oct 8, 08 - 2:36 PM
Email: Click here to Email
Message: Deborah,
This is a really tough stage. For us, it went on for a very long time. In the early years we tried to have David say 1 word at a time. That helped. As it progressed, we asked him to slow down. That worked for awhile. Thankfully he was patient and would repeat over and over. As Darlene suggested, try to get one or two words and then ask questions. Hang in there, I know how hard this is, even though we know some day it will be gone for good going through it is very hard. Just one of the parts of the disease that make us Batty!
David's last word was "Dad". Now how fair is that?!
Good luck, Nancy
Name: jb
Date Posted: Nov 4, 08 - 2:52 PM
Message: it does come to just doing the things you know they
like saying to them things they like we play alot of
music and sometimes a word will come out i think it
makes my son feel connected that hes a part of something anything that gets a smile play on that
and i use distraction when i cant figure it out my
son is 17 but we sing every preschool kindergarden
song because long term memory he can be satisfied
with that and i do get lots of smiles....