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Topic: Do you ever forget about the DS part?

03-23-2006 10:52 PM

ValerieM   Senior Member Location: Moravia, Iowa Registered: Aug 2005 Posts: 665 Last visit: 03-24-2006

I've mentioned before that we didn't find out until Nicholas was 3 mos old that he had DS. At that point, we had already known him for 3 mos, and learning about a diagnosis didn't change the person that we already knew. So the DS kinda took a backseat compared to the heart problems, KWIM? Anyway, I find that I literally FORGET to mention that he has DS sometimes! I was talking to someone at work the other day, and her baby was going to have an ECHO to check for a suspected heart problem. (Didn't find any, by the way.) Anyway, I was telling her about Nicholas' heart problems. So later on she asked if his heart defect was genetic, and I was like, "No. Just one of those things." Then a few minutes later, I remembered..."Oh, he has DS. It's very common with DS." And after he had his surgery at 3 mos, somebody asked me if any of this would cause any delays, and I answered, "Nope. He's just fine, now!" Then, "Oh. He does have DS, so I guess there will be some delays." Have any of you ever done this? Or maybe I'm just very absent minded?!? __________________ Valerie, mom to Derek, 16, and Nicholas (DS), 2 1/2

03-23-2006 11:26 PM

bonniepd   Senior Member Location: Minneapolis area Registered: Jan 2006 Posts: 140 Last visit: 03-24-2006

When I meet someone new I usually don’t say anything about the DS but it is always in the back of my mind. I usually try to decide if I should say anything but have chosen not to say anything unless they are a friend. When I look at Anthony or play with him I forget. But today was different. It was not bad or good but different because I found myself comparing him to a non-DS child. This is what happened. I went into work to have lunch with friends and I brought Anthony and Andrew. When I was pregnant there were three other women pregnant at the time. (big baby boom at work) One of my co-workers came in with her little baby whose son was born two weeks before Anthony and the closest in age to Anthony. Maybe it was just me but I could see the difference in the two babies. Anthony is much smaller and I saw other slight differences with muscle tone. Other than today I usually do forget about the DS. I just enjoy being with him and I forget that there could be any delays. __________________ Alexander (8/7/99), Andrew (9/26/02), Anthony (12/29/05 DS)

03-24-2006 12:42 AM

Jen4David   New Member Location: Registered: Jan 2006 Posts: 8 Last visit: 02-09-2006

That's a funny question, because I was just thinking the other day that there must be something wrong with me, because I think about it ALL the time... when we play, when we do tummy time, when we babble, and every little thing that I wait for my son to do or should I say anticipate him doing. David was born 12/12/05, and it has only been in the last couple of days that I didn't think of it first when we were doing something together. It's not that the DS bothers me, but I'm so concerned that I'm not going to be on top of things for him. I'm glad I'm getting beyond that - Oh, and telling people... I just don't think it's necessary to tell everyone everything, so I do let it slip my mind in certain situations.

03-24-2006 07:32 AM

waith   Member Location: Manchester, England Registered: Apr 2004 Posts: 48 Last visit: 03-24-2006

The majority of the time I don't even think of the DS. Unless he has an appointment or something related to the condition, or some asks me about it. I was thinking the other day why I like the photo, I have chosen of him on my signiture. I think its because he looks just like my other son and then I thought yes, its also the look of the son I thought I would have had. Then I laughed, as I realised I had'nt lost a son to DS he was here all the time. I suppose what I am trying to say is we only see what we want to see, you can only see DS or you can see the child you were suppose to have all along. I think when you first come home with your baby and your hit with what seems like a ton of appointments, therapy and the great DS unknown. It can completely take over what really should be your special time as a family to snuggle up and bond with your baby. We all want to do the best for our little ones thats why at first its on your mind alot. In the early days I was felt Dominic was jumping through hoops to show everyone DS was'nt the bad thing its made out to be and that he could keep up developmental. Now I don't feel he has to perform or I have to prove anything to anyone. Its a lovely place to be and I can assure you its not denial. I just love Dominic for Dominic and the DS is just a small part of who he is. I suppose its just part of the journey. Sorry for rambling but your posts got me musing about things and its nice to know how much further down the road I've got. Does that make sense ? __________________ Maxine UK. Mum to Elliott 12, Dominic 2 DS.

03-24-2006 07:37 AM

Deborah   Senior Member Location: Asheville, NC Registered: Nov 2002 Posts: 373 Last visit: 03-23-2006

I also do not think of Ds much.. mostly in alone time thinking and wondering to much about her walking. and talking..other than that.. she seems to be typical.. into everything making big ole messes with toys and books and videos and such.. im not embarassed by her or the Ds... Most of the time i say something about it.. just to see reactions.. im like that with my humor too... just say funny crap to get reactions outta people have a purty day !!! __________________ Deborah, momma to Emily Grace 3/22/03. The love of my life!~~~God grant me the Serenity~~~

03-24-2006 08:04 AM

Mashpotato_69   Senior Member Location: Birchington, Thanet, Kent, England, UK Registered: Aug 2005 Posts: 136 Last visit: 03-24-2006

I mention Saul's DS to most people, mainly to see how they react and what information they know/think they know about it. Generally in everyday life i don't see it. He still runs about destroying stuff, throwing things, climbing on stuff. The main thing that would make me notice is the fact he signs instead of speaks. But i'm planning to teach the new baby this also. When i take Saul to a special needs group, one of the mums brings her ds son and her grand daughter. (she doesn't have special needs). The girl and Saul are about the same age and fight over toys and things. Unlike her Saul can't express to her what he wants her to do. Like last week he wanted her to get out of a carseat and so pulled her hair just to try and get her up. So i notice his differences then __________________

03-24-2006 08:06 AM
Renee Lacey's mom   Senior Member Location: Gloster, Louisiana Registered: Oct 2005 Posts: 700 Last visit: 03-24-2006	I just don't think about it unless I see another DS baby and then,of course, I have to go over.. To us it just isn't a big deal anymore.. We love her and accept her for who she is.. So you aren't crazy it is just called acceptance!!! __________________ Renee Parker Haley Kassidy * An extra little Chromosome thats all it is, you see. Where all of you were born with 2, my angel was blessed with 3.*

03-24-2006 08:17 AM

LovelyKennedy   Senior Member Location: Niagara Falls, NY Registered: May 2004 Posts: 964 Last visit: 03-24-2006

I don't think about the DS much. Like you, we didn't find out Kennedy had DS until later, when she was nearly 6 months old. And she had a major heart defect as well. We just wanted to get her healthy and the DS took a backseat. Now that she is walking and doing pretty much what her brother and sister are doing, I don't think about it. I did moreso in the early months because at 1, I was still carrying her everywhere, preparing separate meals she could eat, etc. Life is good! In a lot of ways, she is a typical 2 year old. Into everything, her attitude is starting, and she has her own ideas about what SHE wants to do now. It really is just precious considering I didn't know quite what to expect once we received her diagnosis. __________________ Beth Mom to Cameron 2/26/2000, Kendall 6/25/2002 and My Lovely Kennedy 9/10/2003(DS)

03-24-2006 08:25 AM

raeanncollins   Senior Member Location: Illinois Registered: Mar 2005 Posts: 274 Last visit: 03-24-2006

For us...Sam have DS was the least of our worries...we wished he ONLY had DS since he was born so premature with so many complications. Well a few months ago (wow maybe almost a year now) we switched GI docs and she sent me a medical release form and a medical history form to fill out and bring with me to the appointment. I was meticulous and filled out every little tiny line and even had attachments. So the day came to meet with the new GI and she went over Sam's chart and then asked me..."does he have Trisomy 21?" and I said "Yes he does have Down syndrome"(and then I started thinking does this woman actually read the files)...and then she said..."I thought so but wasn't quite sure because you forgot to mention it on his medical history form...but it looks like you got all the really important stuff..." and we both had a good laugh. She see sees both my boys and is wonderful. So I guess that yea, I forget about the DS sometimes too. rae __________________ RaeAnn~ mom to Andrew the Destroyer(11.24.01) and Chromosomally Enhanced Boy Sam (12.11.02) ~slow and steady wins the race!

03-24-2006 09:16 AM

fixedyang   Senior Member Location: Orlando, FL Registered: Dec 2005 Posts: 166 Last visit: 03-24-2006

Early on it seemed like everyone wanted to talk about DS so much all I wanted to do was get to know Sadie and bond with her so when I would see her sandal toes I'd say to myself "Thoese are Sadie's toes" or the crease in her left hand "That's Sadie's sweet little crease" so that I was focusing on her. It worked! I got to the point where I'd request only to talk about DS related issues that were important in the moment. Why should I worry about if she'll drive or not? Do any of us really have tomorrow? So, yes, I'd say most days I don't even think about it anymore. I don't ever mention it to anyone unless they say something first. It's a medical diagnosis not who she is. I wouldn't say "This is my friend so-and-so she has genetial warts" or "This is my cancer friend so-and-so". Saide has the right to be introduced as a person.....not DS or T21. If someone asks, and at this point they don't, I would be happy to talk to them about it. __________________ Sherri & Chad married 12/16/00 Mom to Cooper (14), Hunter (12), Ethan (2), and our sweet baby girl Sadie born 10/3/05 (DS) "Listen to the MUSTN'TS, child Listen to the DON'TS Listen to the SHOULDN'TS the IMPOSSIBLES the WON'TS. LISTEN TO THE never haves Then listen close to me- ANYTHING can happen, child, ANYTHING can be" Shel Silverstein

03-24-2006 08:28 PM

ElijahsMom   Senior Member Location: Waverly, Ohio Registered: Nov 2005 Posts: 135 Last visit: 03-23-2006

Hmm...yes. I do. For me, it doesn't make Elijah. It's just the tiny part...you know, the one chromosome. I know it sounds ridiculous, but I NEVER remember to mention it...even to his drs...or on medical sheets and stuff. It has just kinda went to the back of my mind, and stayed there. Once I accepted it (which took a while) I was ok with it. I don't think that I have to TELL everyone...cause what difference does it make? He's not going to act...cry...or look different (and I mean that as HIS look isn't going to change) just because of the DS. There are more important things in life to worry about---like his heart defect. That originally (and still does today) worried me more than anything. Everyone that knows Elijah loves him for Elijah. And I love him...and I think that that's what matters...not the "DS part". __________________ Elisha: Mommy to Elijah 2/1/06 [IMG]

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