Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hello, I just joined the list today. I read the archives for about two hours. It seems I have things in common with some of you. Alena is ten, and has the double whammy of Down Syndrome and autistic tendencies. She has never been formally diagnosed. Her current school teachers feel that a diagnosis won't change anything for them. They will treat her the same and do the same things. They are resistant to using labels, which I appreciate. However, I have struggled with relating to other parents who have " typical " children who have Down Sydrome. I have also felt powerless as to knowing how, and having strength, to help Alena. Alena is non-verbal and constantly pats her face. All her baby dolls have no toes since she has chewed them off. She doesn't play with toys as much as pat with toys. Library books are easily destroyed around here. She is not very responsive. She regularly has giggle-fits that last hours in the middle of the night. She has " lucid " moments when she seems to connect with us, but most of the time she is in her own world. She is very routine-oriented. She doesn't do well with loud noises and some crowd situations. She has a texture aversion problem. She is not toilet trained (I found some good info to read up on in this site). Do these behaviors sound like autism? I don't feel I need to label her necessarily, but I want to understand her, know ways to teach her, and help others understand. About five years ago I was on a DS e-mail list. I felt awful because I couldn't brag as much as most people. I didn't relate to our local support group for similar reasons. For a couple of years I pretty much gave up trying to give extra help to Alena. I let school deal with her progress and concentrated on just loving and taking care of her as I do my other children. But lately, I've been wanting to do better, to do extra. I know there are things I can do. I am tired of being ignorant. Then I found this list. I'm already going to check out the chewy tubes I read about in the archives. I already feel less alone and more understood. Alena's school had a PECs training session for parents that I attended a few years ago. She started PECs but wasn't very responsive to it. So, the teachers stopped using it for a while. Now they are trying it again. I appreciated the posted info on PECs. I think I'll send my husband to the training. I'm embarassed that I didn't do much with it. I related to the posts on guilt. I have been a deadbeat mom. I'm sure your posts will help me find motivation to try harder. Thanks, Deb K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 i'm sorry you feel like a deadbeat mom...bet we have all had those feelings from time to time. we can all just do what we can do and sometimes it is easy to be motivated and sometimes it's not quite as easy. hope you get some support through this list. ps your name caught my eye...are you the deb koehler I may have known from fairport, new york? cheri > >Reply-To: >To: >Subject: Learning >Date: Tue, 06 Jan 2004 22:22:40 -0000 > > >Hello, > >I just joined the list today. I read the archives for about two >hours. It seems I have things in common with some of you. > >Alena is ten, and has the double whammy of Down Syndrome and >autistic tendencies. She has never been formally diagnosed. Her >current school teachers feel that a diagnosis won't change anything >for them. They will treat her the same and do the same things. >They are resistant to using labels, which I appreciate. However, I >have struggled with relating to other parents who have " typical " >children who have Down Sydrome. I have also felt powerless as to >knowing how, and having strength, to help Alena. > >Alena is non-verbal and constantly pats her face. All her baby >dolls have no toes since she has chewed them off. She doesn't play >with toys as much as pat with toys. Library books are easily >destroyed around here. She is not very responsive. She regularly >has giggle-fits that last hours in the middle of the night. She >has " lucid " moments when she seems to connect with us, but most of >the time she is in her own world. She is very routine-oriented. >She doesn't do well with loud noises and some crowd situations. She >has a texture aversion problem. She is not toilet trained (I found >some good info to read up on in this site). Do these behaviors >sound like autism? I don't feel I need to label her necessarily, >but I want to understand her, know ways to teach her, and help >others understand. > >About five years ago I was on a DS e-mail list. I felt awful >because I couldn't brag as much as most people. I didn't relate to >our local support group for similar reasons. For a couple of years >I pretty much gave up trying to give extra help to Alena. I let >school deal with her progress and concentrated on just loving and >taking care of her as I do my other children. But lately, I've been >wanting to do better, to do extra. I know there are things I can >do. I am tired of being ignorant. > >Then I found this list. I'm already going to check out the chewy >tubes I read about in the archives. I already feel less alone and >more understood. > >Alena's school had a PECs training session for parents that I >attended a few years ago. She started PECs but wasn't very >responsive to it. So, the teachers stopped using it for a while. >Now they are trying it again. I appreciated the posted info on >PECs. I think I'll send my husband to the training. I'm embarassed >that I didn't do much with it. > >I related to the posts on guilt. I have been a deadbeat mom. I'm >sure your posts will help me find motivation to try harder. > >Thanks, >Deb K > > > > > >-------------------------------------------------- >Checkout our homepage for information, bookmarks, and photos of >our kids. Share favorite bookmarks, ideas, and other information by >including them. Don't forget, messages are a permanent record of the >archives for our list. http://groups.yahoo.com/group/ >-------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 What a beautiful poem. Thanks for sharing. Diane > I usually don't share sappy crapt..... but many days this poem has gotten me > through... > > After awhile you learn the difference > between holding hands and draining a soul > And you learn that love doesn't mean leaning > and company doesn't mean security. > And you begin to understand that kisses aren't contracts and presents aren't > promises. > And you begin to accept your defeats > with your head held high and your eyes open > with the grace of a woman not the grief of a child > you learn to build your roads > on today because tomorrow's ground > is to uncertain for plans, > and futures have a way a falling in mid-flight > After awhile you learn even sunshine burns if you get to much > So plant your own garden and decorate you own soul > instead of waiting for someone to bring you flowers. > And you learn that you really can endure > That you really are strong > and you really do have worth > and you learn and learn and you learn > with every goodbye you learn > by: veronica a shoffstall. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 thanks for sharing rebecca Learning > I usually don't share sappy crapt..... but many days this poem has gotten me > through... > > After awhile you learn the difference > between holding hands and draining a soul > And you learn that love doesn't mean leaning > and company doesn't mean security. > And you begin to understand that kisses aren't contracts and presents aren't > promises. > And you begin to accept your defeats > with your head held high and your eyes open > with the grace of a woman not the grief of a child > you learn to build your roads > on today because tomorrow's ground > is to uncertain for plans, > and futures have a way a falling in mid-flight > After awhile you learn even sunshine burns if you get to much > So plant your own garden and decorate you own soul > instead of waiting for someone to bring you flowers. > And you learn that you really can endure > That you really are strong > and you really do have worth > and you learn and learn and you learn > with every goodbye you learn > by: veronica a shoffstall. > > > Quote Link to comment Share on other sites More sharing options...
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