|
Post by Debbie on Apr 3, 2005 17:57:31 GMT -5
Renee,
I agree with you on that first sentence totally! Society has us pegged. You are so right! For someone that has Down syndrome, I can say from experience that I have been pegged or stereotyped. It is how they see us themselves.
Having Down syndrome has definitely brought on problems for me. I also think that our personalities though play into this as well. I don't think that Down syndrome really plays a part of that though. We are all born with different personalities.
Susan,
It takes me a while to do things too! My parents tell me that I am slow in getting ready for anything. I thought it was because I am a slow mover. I don't like to rush when I am getting ready to go some where or do anything. I have to be pushed sometimes. Do you think this does have something to do with Down syndrome? I have heard of some kids and adults who are hyper and have problems with concentration. If I find a good book I will read it all day and not move at all unless I get real thirsty!
I have my routines too. Ever watch the show, Monk? He is a police detective that has many fears and odd behavior's due to losing his wife. He is a neat freak and has to clean everything and has to put everything in order including sizes and shapes. Well, that is me to a tee just about! I don't think I am that extreme though.
Monk is a nice show and there isn't a whole lot of violence which is nice for a change. I wonder how long the show will stay on tv......
|
|
|
Post by Kristen on Apr 3, 2005 20:04:12 GMT -5
On thing the a-hole doctor in teh NICU said that really stuck with me is "not to let him get away with something just because he has downs" Dave said "Are you kidding me? You don't know my wife!" Overall I think that sums it up. I never think oh it's because he has DS even though ok, the slow to walk and talk...that would fall under the harder for him because of the DS, but I can honestly say I have never had that thought "It's because of the DS" cross my mind. It's like I know it's a factor and will be tougher and I accept that somethings need extra work/time/patience and we respond accordingly, but I don't write anything off as that, KWIM? No way in heck will he ever get that lucky in life LOL!
|
|
|
Post by Chris on Apr 3, 2005 21:53:13 GMT -5
Debbie ~ I am very slow, too. My husband and his mother are completely done eating and I am just finished getting my food salted, buttered, cut up, etc. I was always the last person finished eating when I was growing up, too. It takes me an hour to get showered and dressed and that's when I hurry! I think it is because I am too meticulous. My husband can't believe it takes me so long to clean the house. When I go to the grocery store I am ususally gone for two hours. Being slow is just part of who I am. My daughter with Ds is three and a half. I must admit that she is nothing like a typical three and a half year old child. She has no sense of fear so we have to keep and eye on her at all times. I think we try to keep in mind where she is developmentally rather than her chronological age. I think Ds, her heart defect, frequent ear infections, frequent upper respiratory infections, low muscle tone, etc have everything to do with where she is developmentally. Maybe it is because I am older, but I have no problem in letting Sarah develop in her own time. I am not saying that we don't work with her, encourage her and expect good behavior because we do. I am also aware that she knows how to manipulate us, especially her daddy. I try to nip it in the bud as soon as I am aware of her doing it. I have an older daughter and I am a teacher so I have had a ton of experience working with children. I think I have a pretty good idea of what is typical of most children. I think my experience will help me determine what behaviors are due to Sarah just being a kid and trying to get away with stuff or the behaviors are due to her Ds. Hope that makes sense. Jessie, I have been so impressed with your interest and love for Jason. I have been a step-mother and know it is difficult to love someone else's child as your own. Like you, I was a step-mom before I had my own child. In hindsight, I wish I had been easier on my stepsons. I wish that I had expected less of them and just loved them for the unique and wonderful little boys that they were. I thought so many times that they would have been so much better if I had been able to raise them from birth. When I had my first child, I found that I didn't expect as much from her. Partly, it was because I knew her so well and the other part was because I loved her with my whole being. I loved my stepsons and would have gladly jumped in front of a speeding car to save them. I just didn't have the opportunity to bond with them like I did my own child. I was afraid to love my stepsons with my whole heart because they did have a mother. At the time, I didn't want them to feel that I was trying to replace her. Now, in my old age, I see that there is no way that I could have loved them too much. Again, I am probably not making any sense. Just enjoy Jason. Let your husband be the disciplinarian and you can be the fun parent. I know that Jason going through puberty and the behaviors that go along with it may not be too pleasant for you. Let his dad deal with it. BTW, how are you feeling? Chris
|
|
|
Post by Jessie on Apr 4, 2005 7:41:10 GMT -5
Thanks Chris for the encouraging words. I figured that being in my mid-30's I would end up marrying someone that was most likely divorced and there would be step-children involved. However, it never once crossed my mind that the stepchild would be a special needs child.
I try to look at it as it's just a differenty set of issues/problems, not that it's any worse or better than typical kid problems. And, although it ticks me off how Jason's mother is, at least we don't have to deal with her very often - and she's in another state!
I think you are correct that I just need to let Brian be the disciplinarian. He has a hard time with it though - typical dad way of thinking - he's gone all day at work and doesn't want to come home and be the big mean guy. Also - he doesn't get to read everyone's advice here at UnoMas, so I have to be the enforcer most of the time - LOL.
Thanks everyone for your input.
Jessie
|
|
|
Post by Renee' on Apr 4, 2005 8:35:15 GMT -5
Debbie I think you are amazing... I am "normal" yet I stink at math and I take too long to get dressed. I also have trouble doing just one thing at a time.
Thank you for your imput. ;D
|
|