|
Post by poojamom on Feb 24, 2006 14:03:01 GMT -5
My personal opinion on all of this discussion here: Down syndrome has been the same from what 100....+ yrs now. The diagnosis hasn't changed nor has many of its characteristics.Whatever the system,,,there was still more than a 50% chance of a woman with DS reproducing a DS baby and it still is!
What has changed is the outlook of the society and the awareness and the approach we as parents and guardians can take. Pooja is only 11 and still in the very early stages of puberty, I know I will have people like Jackie, who has already beenthro' that road to share her experiences what worked for her and Emily and lot of you who also have the same aged kids as Pooja.This is my own system and it works for me.
|
|
|
Post by Chris on Feb 24, 2006 19:24:26 GMT -5
I found out that Sarah would have Ds when I was pregnant. I read and read about how much more our kids are capable of achieving now due to the wonderful early intervention programs. Once Sarah started in our school districts program at five weeks, I was less than impressed. From what I have heard from other parents of children with Ds, our program has been basically the same for the past 20 years. It was really trail blazing 20 years ago.
The only difference that I can see is that we are given more hope. We are told to have higher expectations. In the area I live in, inclusive education for children with Ds is still a huge fight. Kids with autism are included more often but still not without a strong advocate.
I still believe that the parents are the most responsible for a child's success. A great parent 20 years ago probably is better than a mediocre parent whose child has a ton of cutting edge therapists.
Chris
|
|
|
Post by chasemansmom on Feb 25, 2006 8:43:36 GMT -5
Ohhhhhhhhhhhhhhhhhhhhh, why do you mae me post again CC and those of you who wrote asking what "new system" means. I took offense at that and thought, noooooo, I am just going to leave it alone. Well, I'm not offended any longer but am chuckling over it now because........... I am going to tell you the truth, Susan, you be truthful and speak up here now too okay?...... we have had these conversations, remember? I used to think when Chase was a baby, oh thank goodness it is now and not ten years ago as things will be so much better for him and he will be so much smarter then the children with DS of the past...LOLOL, I swear I really thought those actual dumb things. But I want to explain what Chase has had since a baby and maybe someone who is a part of this "NEW SYSTEM" can tell me what Chase missed out on being so old and all. He started schooling at 8 weeks, OT twice a week, PT once a week and speech once a week, yes at 8 weeks. He and I went to parent and baby classes once a week also, and we were a part of a big ARC family that met twie a month to work on and share new ideas. Chase walked at 14 months, sat up at 8 months and crawled at 10 months, every where.He got summer school speech for four years. He started preschool at age 2and 1/2, was included in his preschool with "NORMAL" kids, the term is inclusion. He learned to count in school to 40 when he was three, knew his alphabet and could read simple books by 4, and was potty trained by four, all of this was a part of our "new system." Chase was INCLUDED with others, his peers until fourth grade when I realized I was doing him no favors, he did NOt want to be a part of that, so he is in a self contained classroom for 2/3's of a day by our choice and his, he is more comfortable. He got sensory intergration until he no longer needed it two years ago. All his SCHOOL FRIENDS are non disabled which for some reason he perfers as well as him perfering older students to those his age or younger. Chase reads at a fifth grade level, does math at a 1st grade level, has speech twice a week and OT once a day. We have lots of things he is apart of, a super kids soap box derby...did I mention he took first place last year, special olympics, soccer which he chooses not to be a part of any more, he doesnt like others taking his ball away, basketball which he also wont play in for the same reason, he doesnt get that it is fun to get the ball taken away from him LOL, he swims three times a week, he volunteers at the local pet shop twice a week, he goes to the library twice a week to read and to play on their computers, we have horse back riding for disabled kids here also...so what I am not sure of is what the new system has that my "old" child doesnt have cause I think he is still young enough to get some of this as he is learning so fast right now I cant keep up. Our school system sucks, but heck, they suck all over the place, that isnt anything new or old, that simply depends on the mentality and intelligence of the school personell. So ouch, careful to not do what I did because I swear to you, in ten years you will be in our place and thinking the same things, it is all the same, just done a bit differently. Our children will still all be the same, the way God made them, either doing fantastic or maybe a bit slower, but in the long run it doesnt matter, they all have DS and no matter what this "new system" offers, they all will still have DS and be the same. I used to think that because I worked so hard with Chase every day, (I was consumed with making him the smartest child with DS in the world you know) he WOULD be the smartest child ever born with DS, as a matter of fact I was sure of it. Then life and truth stepped up and slapped me in the face and I realized Chase is just Chase, he is healthy, he is loved, he is a challenge, he is my son, and no matter who he turns out, nothing is going to matter except that he is happy. I am truely not being sarcastic, these words come from my heart, I have never told anyone how stupid I was and how pompous to think I truely believed all of this. I am not saying stop trying, I am simply saying your children will be as ours are, no better, no worse, simply children born with DS, wonderful sweet children, and some of them, as mine and A's do, will have more then one disability, and that is okay. hugs, Robin
|
|
|
Post by AnnieC on Feb 25, 2006 10:35:25 GMT -5
I think the only difference between therapies today & 20 years ago is that it has increased awareness of DS, which is a great thing. But, I do have an issue with today's therapies or the "new system" ..... I truly believe all of our children are their own individuals & they develop at their own rate...irregardless of therapies. I believe therapies are wonderful, but they are the enemy as well. What I mean is, instead of enjoying your child, you are constantly trying to "measure up", do the right thing, etc etc. & its exhausting & frustrasting. I believe it is false hope as well. And maybe this is good, because when we first have our child, we are terrified & just want to control the situation, so we dive right in, as we should. But, if it so happens that our child just doesn't measure up by therapy standards, it is awful. You feel like a failure & I hated that. Because, darnit I AM a good mom. Raven had every therapy under the sun...she started at 4 weeks old!!! We did school, school therapy, private therapy...everything! Well, Raven still progressed at her own pace. She may of sat up unsupported at 7 months, but she didn't crawl til she was 2, didn't walk til she was 6 & just started to feed herself with a spoon. I am so proud of her I could burst. But, it was very hard for a long time.....I felt I was failing her & I truly believe it was all the emphasis on the therapies that contributed. We are so vulnerable as new parents that I think we would believe just about anything & try anything to give our child what they need. Of course we would, we are wonderful parents who love our children. But, there is a price....our sanity!! No, seriously, I just wanted to say that I believe us, as parents, offer the most: the most support, acceptance, & love that our children need, & that is why our children thrive. I hope that I don't offend anyone, I am just offering my perspective of what I experienced. I am probably in the minority, but I just felt the need to say it. Thanks for listening
|
|
|
Post by Chris on Feb 25, 2006 15:18:03 GMT -5
Annie, I agree with you whole-heartedly. I often wondered if all of Sarah's screaming and frustration in therapy sessions did more harm than good. Between the school districts EI program, the classes for both parent and child, the private OT and PT at the children's hospital, playgroups and doctor appointments, my child did not get to be a baby! We had something scheduled everyday. I was able to take three years off from my job and all I did was run, run, run!
I wondered if she would have reached those developmental milestones at the same age if she hadn't had therapy. My guess is there probably wouldn't have been much difference. I think she sat up when she was physically able to sit and crawled when her body was ready to crawl. I know that the studies show my opinion to be wrong but I wonder about my specific child.
I did get a lot of support and got to see so many people fall in love with Sarah. It helped validate in my mind that I had a wonderful child and she was perfect just as she was. I never doubted that she was wonderful, it was just great to see other people got it, too.
Chris
|
|
|
Post by kellyds on Feb 25, 2006 17:10:53 GMT -5
I still believe that the parents are the most responsible for a child's success. A great parent 20 years ago probably is better than a mediocre parent whose child has a ton of cutting edge therapists.Chris, thanks for posting this. It's what I believe, but you said it better than I could have. We are doing our own "early intervention". At 12 1/2 months of age, Joshua plays peek-a-boo and patty-cake, gives high fives, has a specific sound he uses to indicate he's hungry, and only has to be shown once which button to push go get a new toy to perform. He "combat crawls" anywhere he wants to go, is well on his way to sitting up and has recently started getting on his hands and knees, preparing to crawl. He nurses like a champ and eats anything I'm willing to squish up for him. I don't believe he'd be doing better if he was in "formal" E/I. A very motivated parent can do as well, or better than, the most "qualified" professional. I'm getting my training the same place they got theirs after all . . . books, videos, and others' experiences. I just don't have the paper to prove it.
|
|
|
Post by AnnieM on Feb 25, 2006 22:16:52 GMT -5
I wish these post were more condensed, so that some of what is being said wasn't getting missed. I have been looking and looking for the reply of the person who stated that there is a "new sytem" and I can't find the reply? So have I missed the answer to what the "new system' is? I am very curious to know what "it is?
|
|
|
Post by Deborah on Feb 26, 2006 9:12:29 GMT -5
I have finally taken the time to read all the posts! WOW, what a busy topic!!
Robin and Susan.. Jennifer is also "betrothed" to a very handsome boy named Hayden. Jennifer of course is the older woman seeing there is a year and a half difference in age. They have no need to worry about anything as Hayden's mom, Keri, and I have it all worked out! We are going to buy some land and build 3 houses. Jennifer and Haydens house will be in middle with me and Keri on either side. We will have a nice walkway connecting their house to ours. There will also be a pool and gazebo for family time. I think Jennifer and Hayden are SO lucky to have me and Keri for moms!! LOL.
Deborah
|
|
|
Post by chasemansmom on Feb 26, 2006 10:58:16 GMT -5
Annie C....you are right, you ARE an awesome MOM!! Annie M....LOL, condensing will not help, the peson who used that new term "new system" hasnt replied as to WHAT the new system is. LOL, and btw...you also are a awesome mom!!!! LOL Deborah.... sounds like Susan and I. We have planned to moer somewhere warm, it was susposed to be Florida but I am thinking I need to talk Susan into maybe a carribean island type place instead And of course puting their house into between ours is the only way to go.LOL, hugs to you! Robin PS..tell Jenn that Em is a year older than Chase and I am a year older than my DH so speaking from experience, that is the only way to go, LOL!
|
|
|
Post by Debbie on Feb 26, 2006 18:30:20 GMT -5
AnnieM?
It was Kristen I believe that talked about "new system" and the different way's things are now. I am so out of it that I wouldn't know anything about this topic. My time was back in the olden days. ;D
|
|
|
Post by hannahsmomuk on Mar 1, 2006 18:23:37 GMT -5
wow this post is soooooooo long and I have to confess I have not read half of the replies on here, so apologies for that but it is quite late in the UK so I am very tired
I just wanted to answer the original topic and to say that here in the UK there are a couple who got married and I had the priviledge to meet them
they both have DS and the were originally brought up in a home ( as back then in the UK it was considered the done thing to give your baby with DS up and put them in an institution )
The couple are lovely and inspiritional. They live in sheltered accomodation and they had a lovely honeymoon and they joke about each other and who wears the trousers in the relationship.
They even managed to locate the girls parents and her father gave her away at the wedding which was awesome
Just wanted to share that anyway as I have an open mind about it all, if Hannah meets someone and wants to get married then so be it, if she doesn't than thats OK too
|
|