To New Parents and ones of Little Ones...

[christie]

I really need to know how you feel bout this. I was chatting with someone tonight that felt only the "glorified truth" or only the "positive" is what you all want to hear on this site Is that true?? I really need to know, cause I tend to be one that just post what is, you know the good with the heart wrenching, cause to me that is what a "SUPPORT" group is all about, BUT hey what do I know??

Would love to hear your opinions on this

CC ~

[Emilysmom]

I certainly don't qualify as a new parent or a parent of a little one, but I have an opinion that I'd like to share. I honestly do not believe that the overall desire of ANY of the parents here at Uno Mas is to just hear the GOOD (glorified truth????) stuff. I think we come here to share a big part of our lives.....and life has both good and some very real, difficult, scary times. I think when the posts are about the hard times a child or family are going through...that is when we really seem to show how much we care for one another. I believe we really do pray for each other and for the children and that we do support each other through the hard times.

I'm just speaking for myself though......I personally need some support during good times too! With the recent struggles I've had with Emily's school placement, I have not talked with my own family about it because they really do not seem to understand at all!! I have heard from my family "Honey, why would you even consider putting Emily in class with all the regular kids? That can't help but frustrate her"! So.......I prefer to come HERE to find parents who hopefully understand that everyday decisions are tough and that there can be good experiences with inclusion as well as non-inclusive school settings. I come here for support in the good times too. I really hope that the new parents and the old ones too want to hear it all.

Susan

[Pat]

I want to hear the truth! It helped me so much knowing there were kids out there like John-John. That I was not alone. Robin & CC helped a lot with that!!! I have a 5' fence, not a 4' one If Chase & Chris didn't have a few yrs on John-John, I'd let them race The kids I had seen with DS seemed so compliant, you could turn your head and they would still be there. John-John would be 2 blocks away.
If we only said all "good" things, how would we feel when things went awry? Who would else understand? How could we pray for a need we didn't know about? How could we share about the miracles that happened after we prayed? Who else would cheer when a mom had to change the first poopie diaper because the colostomy reversal worked? How could you give me advise or suggestions on how to change a behavior? or remind you that experts are NOT always right. What worked for your kid?
There are many threads that share the awesome things our kids do. I think this is a great site. (I do miss the daily Chaseman stories, can that boy get into things, one smart cookie!) I could laugh with them, cry with them, not be here to judge as I have not walked a mile in her shoes. I have a child who has DS, who is healthy. I do not have to deal with ADHD, OCD, or health problems. John-John is a pistol & has the same stubborn streak as his sister To really know you & your kids, it helps seeing the whole picture.
I am not alone & there are some great people out there!
CC you're one of them!! ;D You & others let me know there are some trials (there is with ALL kids) & they DO grow out of them. That's encouraging!
That's just my opinion Sorry, I'm not a new parent
Pat

[Staci]

I know I'm not a brand new parent, but I wanna hear the truth! I used to feel like only the good is shared here for the most part...so I hesitate to post a lot about what's happening with Aidan a lot of times. JMHO!

Staci

[MatureMomG]

The whole truth. The good, the bad, the ugly.
BUT, nothing wrong with emphasizing the positive.
My only "complaint" is that more than once I have read a post about some child, and at teh bottom it says something like mom to Billy, tommy, and Mary Sue (DS, 15 months). So I calculate Mary Sue's current age. Then I compare her achievements to my dd's. (I know, that is not the best thing to do, and all our kids will develop on their own schedule, but I DO look at where others of the same age are, or at what ages other kids with DS did certain things.) Anyway, it seems like Mary Sue is WAY advanced compared to my child, and I start feeling bad. Then maybe in a later reply or another post, the same mom refers to her child who is 3 (or whatever, much older than age indicated in "signature"). What has happened is that whenever this mom joined up, she put her child's age at that time (undersatdnable) and never updates it (doesn't think about it). That is my only "pet peeve" regarding this board. And now that I realize it, I sometimes "adjust" for ages mentally, or guess if moms don't give current ages in their replies, KWIM?

Yours in Christ,
Kathy

[amante]

I am a newer mom (my son Peter is 3) and I come here to learn reality and I like it. When I need to talk to mom's or dad's that have children more Peter's age I go to the website www.downsyn.com. It is for newer parents and I find that I am one of the older mom's there. At some point I will find myself coming here more than the other, but I am not ready to make the leap yet.
My two cents worth.
Amante

[meghans_mom]

Kathy - one thing to remember...the signatures at the bottom of the page aren't always updated for the child's current age...I'm not sure what mine even says, but I'll bet it's not current. I've noticed it alot because there are several kids here who are just the same age as my meghan and I do the same thing (comparing, BAD mommy, BAD!!) - and I know for sure not everyone updates their signatures....so dont always take it at face value :-D

CC - yes, I want to hear it all...I don't think that things should be sugar coated...I think when a new parent arrives and we have threads about "what's good about a child with DS" - then that's what that thread is about. And it's a good idea.
It could just as easily be "whats difficult about having a child with DS"....but maybe not as many would post as readily.
I know when we found out about Meghan, and we decided there was no decision...she was our child, and that was that...we agreed that there are no guarantees with any child. Difficult things happen. Illnesses, scary things that noone knows is going to happen - they happen with typical kids as well.
Yes there are things that are more prone in our kids...and i think these things should be shared. difficult behaviors should be discussed, because it helps to know you're not alone...and heck, someone might have a great solution that I haven't thought about yet. The other stuff I find more diffiult to read about - teasing, exclusion...but that doesn't mean I want it hidden. But nor do I want it talked about til I can't stand it anymore.
I think a good healthy discussion about the positives AND negatives is good...I dont think the difficulties should be hidden from those new parents either...they know what they're up against to a certain extent. I did and I'll tell you, my reality isn't nearly as bad as what my IMAGINATION thought it might be...of course we have many years to go and we'll see what the future holds.

Don't know if I'm making any sense at this point...I have Matthew yelling at me about his markers and what color each one is...little tyrant :-D but I love him....OK, gotta run. hugs, laurie

[justinsmom]

The good, the bad and the ugly is what makes this site soooooo AWESOME. As for us moms with not so little kiddos (Justin is 4 1/2) I LOVE to hear about the older kiddos the good and the bad. With the good stories I get renewed HOPE and with the bad I learn what to watch out for and better prepare ourselves. As for the new parents or parents just finding out in utero that come here for insight, how could we lead them to believe that the world of DS is a "perfect world", although it isn't perfect it isn't the "end of the world" either. I know for me when Justin was born, I wanted to know EVERYTHING the good and the bad, I was getting extremely frustrated I either got a fairy tale or the doom and the gloom and then I found Uno Mas and haven't looked back since. I have learned so much from everyone sharing their good and bad stories and have met sooooooo many WONDERFUL people here and oh the GORGEOUS kiddos ;D
Pat, Justin is right there with John-John If there's an opening he's gone!!!!!!!
For me if I only heard or read the good I would be feeling extremely guilty because I would think I wasn't doing enough or was doing things all wrong or Justin just wouldn't be doing half the things the good stories are talking about. I would be in a major depressed mode and/or working my tail off as well as Justins' day in and day out driving both of us nuts.
So CC please keep posting those good and bad stories. Just remember there's no pleasing EVERYONE and the threads are titled so if someone only wants to read about the good then they can just click on the title of a thread that only talks about the good.

[WANDA3CEE]

Hi to all

I want to know the truth weather or not is what I want to hear. I think we all want to know the truth. The problem is are we ready to hear the truth. At times the truth hurts and then we get in to denial but deep down we nknow it is best to hear the truth.

Wanda

[Kristen]

Um...as someone who comes and goes becasue sometimes I think it gets too NEGATIVE around here, I would have to say 100% NO!

[MB]

I would really like to hear from C-bean, RoseMary and Kellyds on this one. Would the bad and ugly send you three into a tailspin right now?

I know I always share the good things happening with my son. We worked very hard at straightening out his behavior when he was younger and know that we will always have something to work out with him. Sometimes it's just plain comical and sometimes it's challenging.

So, in the spirit of the whole truth, I will report the highlights of this week.

1. We are rewriting his IEP to reflect college readiness. We are, beginning next month, going to start traveling to colleges which have programs that support persons with Ds. He has told us for two years he is going to college and we now believe him. As far as I know, we are not going for any kind of degree, just the experience of living on campus and away from home. Special education majors from the local university have been invited to join his IEP team to bring the college perspective to the IEP. We are still working out their participation.

2. We found a pile of his underwear behind the sofa in the living room. Seems he has been coming home from school and taking off his underwear and going "commando" for the rest of the day. His underwear is uncomfortable. And to his defense, he has complained three times to me and I haven't replaced it yet. I will today!

3. Keeps taking CD players to school even though they were banned this year. He has been in trouble at home and school. This morning he told us he was going to create holograms of himself so "we would be distracted while he got on the bus." Do you just love the vocab? Hologram, distracted.

4. His daily woodworking, which he does on our driveway, has attracted a diverse group of kids from the neighborhood. Seems no one but our son is into woodworking which makes our house a popular spot. It is great to see all these kids sawing and hammering and working together. His creations have become too big to carry! And, at some point, we are going to have to start getting rid of them. Anybody want wood art for their walls?

5. With puberty, we are seeing an unhealthy weight gain. We are struggling with ways to put him in charge of his health. IEP team is all over this one and they are coming up with nutritional education and the track coaches are talking to him about his weight and it's effect on his times. We are working on portion control and good habits at home. For example, kitchen is closed after dinner.

O.K. hope this helps. Would love some reactions.

MB

[YoshsMom]

I want to hear everything and be able to say whatever I need to. That's why I come here, to discuss stuff that my family doesn't want to hear or can't understand. People always have the choice not to read things that upset them. Yosh is turning three in a few months and I like hearing about the older kids so I have some idea of what's coming next.

I was finally able to stop doing the comparing thing. Besides just natural differences in ability and timing, so many of our kids have been through so much medically and that sets things back, too. When I realized I wasn't taking into account Yosh 10 weeks in NICU and 1 year with casts on his feet, I saw that I wasn't being fair to either of us. For the first time, I feel I can honestly say I'm happy with whatever progress he makes, as long as we keep moving in the right direction.

[kellyds]

I want to know, realistically, what kinds of things we can expect . . . good, bad, or inbetween. I'd be strongly suspicious of any site that seemed to imply there were never any bad moments in parenting a child with DS, since I'm an experienced mom who knows there are good and bad moments in parenting ANY child. I've been all over the Internet, looking for real information, not sugar-coating.

Still, at a time when everyone else seems to be expecting my husband and I to be going through some sort of grieving process (which we're not), it was really nice to find a place that would celebrate the birth of our son with us instead of saying things like, "I'm so sorry". It's possible to be positive and supportive, without sugar-coating.

[jeannette]

:)Funny this came up. When I first started reading the board, I use to tell my husband about some of the stories from the board and he use to say, maybe I read it to much because it can sometimes be a little discouraging for me and I actually felt that way at some point but continued to read anyway because not only do I get comfort here, it is also such a great source of informaiton. Whether good or bad, it is what it is and I feel that I can only learn from it. So I want to hear it all.

Now when we have an issue with MeKyah, my husband will ask me to put it on the bullentin board because he know that someone has delt with it before. Just my thoughts.

Jeannette

Jeannette

[alisonzmom]

Not so new around here but I do have a fairly little one!

Like Kelly said, I'd be VERY suspicious if only the positive side of things was ever talked about. Yes, we all want to celebrate the things our kids do, and in alot of ways only someone who is dealing with similar issues can really see just what a triumph seemingly little things can be for our kids.

I also have learned so many, many things that may or may not come in handy as Alison gets older because someone came here and posted about a problem they were dealing with, whether it was a behavior issue, school and IEP issues, whatever.

To my way of thinking, it's very easy and all well and good to be there for each other in the good time, but we need to be here for each other in the BAD times - the time when people need the most support!!! Seems to me we wouldn't be much of a support if we all stuck our heads in the sand and hid from the less than joyous times.

And like Pat said, who else would have been doing the "happy poopie diaper" dance with me after all that time Alison had a colostomy! Believe me, not even members of this household, were as happy and supportive as so many of you all were!

I'll quit rambling and babbling on now! But seriously, CC ( and the rest of you guys!!!) if I want a dose of sugar-coated life, I'll go watch Leave It to Beaver, or something like that on Nick at Night, when I need a dose of reality ( which means the good, the bad, the beautiful, and the ugly!) I'll fire up the computer and take a trip to UnoLand!

Barb