|
Post by Alice on Mar 8, 2005 14:51:12 GMT -5
Truth can be different: it could be very painful or just given as an useful info.
When Luke was born, we were given lots of papers with lots of info about DS - that was the truth about DS.
But that truth that time (when we were very new that OUR son is having DS with all its problems) was very painful, AND was not very truth. That was not truth, because every child is different and we were told that our child will have all that all children with DS are having.
|
|
|
Post by Jessie on Mar 8, 2005 16:52:33 GMT -5
I'm a fairly new mom to a not-so-new kid and I can tell you that coming here as made a HUGE difference in the way that I deal with Jason. I think that when there is "new meat" (stealing from Cbean ) here on the board, everyone does tend to tell all of the wonderful things that come with having a child with Ds. BUT, I think that is exactly what is needed when someone is just learning this news. There will be years of hearing and experiencing the bad things, so up front it doesn't hurt to hear there will be wonderful experiences and to know there is support from people who are LIVING this life. You know how I found this site? Several months ago we were trying to give Jason a haircut/excorsim, whatever you want to call it. I said to Brian, this is ridiculous, there's got to be a better way to handle this. I jumped on-line, did a search for haircuts for Ds kids and found this site - and you guys can't get rid of me now! Unfortunately, we still can't give Jason a haircut without it being an excorism, but I have learned so many other things from all of you that I would have never learned anywhere else. Hopefully, someday soon I will be pregnant again (we keep trying and trying! ) and I know I will be freaked out about the testing and the results, etc., but I also know that you guys are all here and have been through it all. Cbean's input will be priceless during those times for me. CC's Christoper is so much like Jason that I sooo rely on her to help me keep things in perspective. And, MB's tips on behavior modification are exceptional - just this past Sunday, Brian came into the house to get me to go out into the garage and instruct Jason to do something because he wouldn't listen to Brian!! Ha ha!!! I thought, hmmm, the boy minds ME better than his own dad - thanks to the superb advice I get here. Ok, I've rambled enough and really I just wanted to say that I like the site just the way it is! Thanks for being here everyone!!! Jessie
|
|
|
Post by Chris on Mar 8, 2005 18:26:52 GMT -5
I prefer to think of our posts as positives and challenges instead of negatives. I love reading about all the wonderful things our kids are accomplishing and how much we love and adore our little cherubs. I also appreciate honest posts about the difficulties we have with our kids. It is reasurring when I read posts and find that I am not the only parent who has a child that goes absolutely nuts when she gets a haircut. I have a three and a half year old who is still eating baby food! If there were only positive posts, I would start wondering if all my daughter's challenges were due to bad parenting. I would like to think that this board is a safe place to come when I need some encouragement if Sarah is going through a difficult stage. I don't want anyone to feel they can't post unless it is about celebrating Ds. I guess it is important to remember that even though we all have a child with Ds, we are a very diverse group and someone will be offended at one time or another. Unfortunately, we can't see your facial expressions or hear your tone of voice when we read your posts and sometimes someone's intentions get misunderstood. Keep posting what is true to you. I don't want to be the only one out there with a child who is more stubborn than a mule. Chris
|
|
|
Post by PaigesMom on Mar 8, 2005 18:35:05 GMT -5
I'm not new to this, and I'm not old to it either, lol, and I certainly cant say more than what everyone else has already said.
I think alot of what is construed as positive/negative is perception of the reader as well. I know, to be truthful, I was scared to death to come here and post my 'Pooping' thread.
I was afraid of scaring others, and I was also afraid at the same time that I would get no responses, and that no one would be able to help me.
Not only did I get so much help both thru the board and continued pm'ing, I've raised awareness for others - just things to be on the look out for and things to question.
Not everything is a challenge, there are GOOD THINGS about having a child with DS. And I think there is a good mix here, we all need to hear both, I know I do, I like the TRUTH, even though I may not like to hear it.
|
|
|
Post by MB on Mar 8, 2005 22:01:46 GMT -5
O.k. answer me this.
When someone posts that their kid goes nuts at haircuts and mine used to go nuts at haircuts until we found something that worked, do I sit here and keep quiet?
I have tried to stop giving unsolicited advice so that means sitting on my hands and keeping my fingers quiet. LOL
What's a person to do?
How about some input?
MB
|
|
|
Post by Tammy on Mar 9, 2005 0:53:43 GMT -5
I found Uno when Lewis was a year old... just before his first birthday in fact.
This site was the FIRST I had found that actually dealt with reality.
So much of what I read elsewhere was so sugar coated... A lot of stuff reads like adverts for cute puppies and actually makes you feel like you WANT one!... Sorry but I never wanted a child with DS...however I wanted my child, and got the DS as a bonus....
I have learned soooo much, not just about DS, but also about myself, by coming here and sharing thoughts, feelings and ideas with others that really do understand what I am having to deal with. Wether those thoughts feelings and ideas are god, bad or ugly is not the point. The point is it is real, not some glossy magazine story.
|
|
|
Post by christie on Mar 9, 2005 1:08:18 GMT -5
WOW GALS THANKS soooo much for ALL your input. I have to be honest and tell you I was kind of afraid to come back here and check if anyone posted to this thread cause I felt I was gonna be blasted for asking such a thing. THANKS for letting it be OK for me to ask As ALWAYS I appreciate your thoughts on things MB, Hmmmm K, I have my thought on your ? BUT it is late and I may not pick the right wording so PLEASE bear with me These are just my thoughts and I could be wrong although Colin would tell you that is impossible, LOLOLOL First I think as we all know these boards are hard sometimes as you can't see the person and sometimes one takes what they see in print different then what one means. I also think sometimes things get soooo crazy for us as parents that we just want to vent and not be told at that time anything other then "Awww HUGS, I can relate" Now what might help with that is as A~ did recently in a post she did bout the teacher change. She wanted to vent and share but also said she at the moment was not looking for adivse. Couldn't get much clearer with that ;D We ALL knew what she wanted/needed at that time. For me when I post say bout hair cuts, since you used that, and OMG till this day is still a problem I personally love to hear everyone's expereince and take what I like and leave what I don't KWIM? Pesonally I don't think you need to be quite when you have been thru something someone has been thru BUT I will say and PLEASE PLEASE take this for what it is worth and with GOOD intentions, HONEST ;D Sometimes people post things, that appear to sound, as if this is the only way and if you do this it will WORK and you know what thats just not the case. Some of what might have worked for your son might be a big flop for me and the other way around BUT what is good bout sharing what MIGHT help is this is what I have done to help the situation, take it or leave it. Do you KWIM?? I am very tired and I hope I made sense without being rude, cause there is nooooooooo way that was my intention, HONEST I don't think anyone should have to sit on their hands and not share here, or what is the purpose of this board? I don't know if I am getting across what I am thinking right soooo I will end this with How bout if we truly don't want more then a HUG at the moment we post that. AND if we really want advise we ask for it, would that help?? I personally LOVE to brainstorm bout things and figure well not all will be good BUT maybe somthing might, LOL and not for nothing if I read somethign I really don't agree with, hey thats why they have the delete button, right ?? NOTHING is black and white when it comes to our kids, we can only share what has happened to us or worked for us and maybe just maybe there is one person out there that can say OMG I can sooo relate or YES I tired that and it worked or you know what I tried that and it didn't work but I tried this and it did... K, I have rambled way tooo long, sorry what I tend to do CC ~
|
|
|
Post by MB on Mar 9, 2005 19:22:20 GMT -5
CC,
That was a very nice post! I did ask for input. O.K. I am too direct.
I do like the idea of the person posting asking for advice.
I do like the idea of the person posting making it very clear they don't want advice. Saves me from upsetting quite so many people. LOL!
Thanks for the response. It really helped. I mean it.
MB
|
|
|
Post by Valerie on Mar 9, 2005 23:19:35 GMT -5
MB... Since you mentioned it, what did you try that works with the haircuts??
|
|
|
Post by christie on Mar 9, 2005 23:59:30 GMT -5
Hey VALERIE, I am sooooo glad you asked that ? COME on MB, PLEASE share as Chris has just turned 12 and although he is getting better with this still the only one that he will let cut his hair and not happily, I might add, LOL is me. Soooo what tips could you share that might help. CC
|
|
|
Post by Cbean on Mar 10, 2005 9:45:28 GMT -5
First of all, I feel as if you all raised me and helped me to be the mother that I am. I remember quite a lot of venting and honesty as I was expecting my little bug. You know what - some of what you posted scared the hell out of me in the beginning - but then, my own baby that was growing inside of me did too! (All positive - not the way I remember it or see it!) But it was b/c of these honest posts that I grew something else besides a belly - strength, hope and joy. Some here really have more than their share and I was amazed at how they found the ability to cope and still remain in good humor. I find that I really pray for all here, when they need it or not and I love that I can also celebrate everyone's good times as well.
Oh and I've been really receiving quite a reality check this week - guess what, my little bug has DS! Becoming quite apparant these days that my baby has a struggle ahead of her as I'm seeing other babies around her age with their heads held high while burping, etc. and looking around at people and she still slumps. I haven't even sent out pictures or a birth announcement of her yet b/c I can't get a decent photo of her b/c of her slumping! Now that we're receiving EI - physical and developmental - I see what she should be capable of and isn't and I'll admit it gets me down. But so what, she's still adorable, she's all mine, she's in excellent health and will do all the things the others are doing in her own good time! That's a given! We've got two wonderful therapists who are helping us and she is going to do wonderfully! Sorry, that's as negative as I can get for now, but I am so sure you will hear negativity from me in the future!
So, I think that comment is totally bogus and I have received quite a lot of support from the people here and given quite a bit in return - whether it was in the posts, IM's or emails. I wouldn't be the person I am now if it wasn't for you all! Perhaps it's just that having a child with DS is all that bad???
|
|
|
Post by MB on Mar 10, 2005 9:50:02 GMT -5
Our barber has been cutting hair for 30 years and has a son with developmental disabilities. He started cutting my son's hair when he was 9 weeks old. I forget at what age my son decided he did not like the clippers anymore and went ballistic.
The barber looked at me (I mean my son was going gutwrenching ballistic!) and said, "if he gets out of this chair without a haircut, I will never get him back in." My son was screaming and begging me to help him. Gutwrenching. I got up and announced I was going next door for a cup of coffee. The barber smiled. I told the barber that he could send someone over when he was finished. I went outside out of sight and wiped the tears from my eyes.
The hair was cut. It took three haircuts like this and then it was over. Haven't had a problem since. And now that my guy is 135lbs and strong as an ox, thank God for our barber! He was one of a few people in my life that taught me how to stay focused when dealing with my son.
MB
|
|
|
Post by chrfath on Mar 10, 2005 9:52:13 GMT -5
I just like to hear the truth. I like coming here because there are so many experienced mom's who have great advice.
It makes me feel better to hear some of the stories about the kiddos who did things later/slower. Since that is where we are at and it gets discouraging only seeing the great stories about kids doing more than my little one.
|
|
|
Post by MB on Mar 10, 2005 10:02:25 GMT -5
Oh C-bean, I remember the day I realized my son was disabled. He was six weeks old. I had to take him to a junior league shopping event. The place was filled with women. I had him in a snuggly.
The comments were:
1. He must have been born yesterday. 6 wks old 2. Was he a preemie? No. 3. Low birthweight? 8lbs.
Any of the other babies there were doing what you described. I could see how delayed he was. I went home and called the early intervention center. They said they had been waiting! We started the next week.
Thirteen years later I can tell you I was wearing black slacks and a white blouse. He was wearing a onesie with ducks on it. It was one of those life changing moments (from the "hit over the head with a 2' by 4' category) that I will never forget.
MB
|
|
|
Post by laurasnowbird on Mar 10, 2005 10:38:52 GMT -5
I found UnoMas when Ethan was a little under a year old. It seemed like in the beginning, my concerns about him were primarily medical, so I visited that page often. It took me a while to get to the General Forum, and far longer to figure out there was a message board. (What can I say, guess I'm a slow learner, LOL!)
I will admit that some of the posts can be discouraging upon initially reading them, but I am always grateful for the honesty of the person who posted. I have learned so many things about the potential pitfalls and things to be aware of at this site. And I'm with you Pat, when we build a fence, it will be a five foot fence. I think I would be far more discouraged if I visited this site, and only heard everyone taking a Pollyanna point of view. It would be incredibly isolating to be unable to share the challenges as well as the joys.
As someone else mentioned, those of you here are among the few people in my life who TRULY understand the challenges in my life. I have some wonderful friends who empathize with me, but none of them really "get it". You guys and gals do.
As far as advice goes, I like the idea of asking for advice, or making a note that we are only venting. It certainly should help to keep feelings from getting hurt. I've gotten some awesome advice from this site, and I hope to get much more in the future!
|
|