but I am so excited... Kyle has gained a whole pound over the last two months!!! Putting him at 11 lbs 5 oz at his 6 month well visit which makes him plugging along steadily on the 10% of the DS growth charts so honestly he is TINY even in the DS community. Length wise he gained a half of an inch which officially drops him completely off of the both typical charts and down to the 25% in length on the DS chart. In other words he is the size of a typical 2-3 month old baby (and a small one at that). No wonder people are beginning to think I'm lying when they ask how old he is and I say 6 months and no he was not premature.

I saw a 2 week old baby yesterday and got to hold her. I was so excited to meet her because I thought Kyle would finally look big next to some baby. Boy was I wrong. He was a little bit longer and definately stretched out while she was still in her cute watermellon ball. But in no way did I say "Wow, Kyle looks so big next to her" We even compared their hands and guess what, they were the same size!

Okay, so here is my question, My sister thinks it is mean of me when strangers or semi-strangers ask me how old he is and I say he is 6 months and leave it at that even when they comment on how tiny he is or that they thought I'd say a matter of weeks old or ask if he was premature. I just respond with "Nope, he's just tiny" and move on with the incredulous looks on their faces. My point is the Down syndrome is NOT who he is or what he is about and I see no reason to tell the general public that constantly. I'm past the point where I used to cry everytime I said it. I also tell people we are friends or friendly with who make such a comment and somehow do not already know. I just honestly don't think it matters that he is so small and do not care what these people think when I give them no understandable explanation about he tinyness. Anybody else agree or disagree with me?

Also if there are any other 6 month old babies out there I'd love to hear how big your babies are too

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-Heidi wife of Kevin and Mom to Nikolai-10, MaryKate-8, Sara-2, and Kyle (T21)-5 months

We have pretty much the same attitude with Piper. We get a lot of "the look" when people find out how old she actually is, and we usually leave it at that. I usually say something like "at least we get our money's worth out of her clothes!", at which point no one can disagree! I have brought up that she has Ds, in a matter-of-fact kind of way to some folks if it comes up in conversation (like when we were at Gymboree and I got the incredulous look when I said that Piper has really short arms, and we'll have to go down a size for long sleeves). It usually opens up a conversation, which I'm more than happy to participate in. I think that sometimes it's important for people to have a positive reference point when it comes to babies with Ds. Who knows who they may know facing the decision of whether or not to terminate. But, at the same time, we certainly don't advertise it, either.

...and I have to say-- Piper weighed in at 11 lbs 5 oz two weeks ago. She's almost 11 months old.

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Aimee, Mom to Piper (5/11/09)
http://aimeesbowlofcherries.blogspot.com

Yep, I still get it all the time with McKayla. Just today I met another child who was born June 17 while McKayla is the 27th he looked soo much older than her. After next weekend I will have to post pictures of Kayla and her cousin who is a little under a month older. He is over 25lbs while McKayla is 19lbs as of last week.

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Windy
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I get the same looks about my 5.5 yr old. He is not small for DS by any means, but he is small for a typical 5.5 yr old. He is the same size as his 3 yr old brother. I am asked DAILY if they are twins. I used to say no with an explanation, but really, people still looked at me like I was crazy and surely they must be twins.... I haven't yet found an answer that will suffice. So now I just say no, they aren't. If they question, I say the one in green is 5, the other one is 3 with no mention of DS. And it's not that I'm hiding the DS or anything, the one w/DS LOOKS like he has DS. It's pretty obvious IMO.

Talitha has always been tiny and still looked like a newborn at 6 months old. People still ask how old she is and their jaw drops when I say she is 4 1/2. She looks about 2. They say "she is very tiny" and I say, "yes and totally gorgeous...though I might be a bit biased". I don't mention DS unless I feel like it. To me it is obvious she has DS but unless I want to get into a conversation I just agree she is tiny and keep moving.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

My response all depends on my mood that day lol. If I'm in a bad mood (kids are acting up and I don't have time/patience to get into the "DS" talk) then my response is "he's almost 3..." "yes I know he's small" and that's that. If I'm going to be somewhere a while, and I'm comfortable with the person (sometimes you just get bad vibes from people), I'll open up about it. I find most people don't know a lot about DS, and I don't mind if they happen to fall in love with my son for a few minutes. Noah loves the attention, and some of the misconceptions I've heard are ridiculous. People ask me if I knew before, or found out at birth...I'm sure everyone knows all the questions because they all seem to be the same lol, just different people asking.

I used to get angry, and just not go anywhere that people could, because I honestly got really tired of "educating" people. I'm over that now. The fact is my son has Down Syndrome, whether I choose to tell people or not. If I choose not to tell them, I see it more as a missed opportunity now.

If you describe down syndrome or explain it and you have a live baby or child in front of them to play with and see...it brings out the humanity of our children...they aren't just Down Syndrome...they are babies/kids first and I kind of like that people get to see that first hand...instead of just hearing about it...or seeing it from time to time...

I think it takes some time to get there though...and not all of us do. But for me, as I'm describing all we've gone through, the challenges we face, the struggles that most days I can't bear to think about, I fall in love with my son all over again, and I realise just how strong both of us are and how far we've both come. So bring on the strangers and the questions...Noah is eager to smile and charm everyone who dares to ask.

I forgot to add...Noah has just hit 22lbs (as of Jan) and he will be 3 in May. I believe he was about 12lbs at a year old and only 15lbs at 2, I'd have to look it up at the dr's office lol...

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS) (May/07), Jesse Lynn (July/08 ), Baby Girl Due April/10

Momof5 - that was so beautiful - thank you! I was about to post the same thing about my mood. If I am PMSing and someone makes a comment well, I feel bad for that person(happened to my own brother just last week - lol). I used to hate the pity looks - because it just is not correct - there is no reason to pity me. I really feel like I have been given a wonderful gift and wish that everyone could be so lucky to have a child or sibling with ds. Now, I know that I have no control over what others think so I just smile and move on. Life is too short to worry about what others think or dwell on what other say.(I have been going to therapy - can you tell?LOL)

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Something I just noticed last night because I've been thinking a lot about this lately is IF I actually have time to talk about it I have no problem answering their questions accurately. I was at a softball game my husband was playing in and I went over to talk to some of the other wives that I knew. Sitting with them was someone I didn't know so when she asked about how old he was then said, "Wow! He's tiny!" I went ahead and explained that yes, he was the size of an average 2 month old but he has Down syndrome so we expect him to be on the smaller size. I had time to talk and it opened up a really nice conversation. I think it is those chance encounters with people you will never see again or will rarely see where I only have a minute that bugs me the most. I don't understand why people expect all babies, Down syndrome aside, to be in this nice little box of what they expect a baby to be.

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-Heidi wife of Kevin and Mom to Nikolai-10, MaryKate-8, Sara-2, and Kyle (T21)-5 months

i think marty was around 10 lbs at 6mo. right now he is almost 8mo and he's almost 13 now. they were happy about his weight gain at the last appointment after being concerned for most of his 5mo weight gain (it was going at a snail's pace). he's getting kankles now lol

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wife to martin II

mom to marty III (8/6/09, DS)

"I praise you because I am fearfully and wonderfully made." (Psalm 139:14)

I think as new parents of kids with DS we are over sensitive to strangers questions and looks. If I saw a child as small as Noah, DS or not, at almost 3 years old I would be curious/concerned as well. My son is the size of an average 12 mth old and is not walking...so believe me when I tell you...I GET it. Add to that I have a daughter who is 10mths older and a daughter who is 14mths younger...people think he and my youngest are twins...and when I tell them they are not, they are suprised to find out that he is actually the older brother.

I have come to realise that people are not trying to be rude, they are genuine in their curiousity, and it was my oversensitivity that made it unpleasant. Every baby has their strengths and weaknesses...and most people are able to easily spot someone who is different. I find most women are the ones who pick up on it quickly, men usually won't notice or care to say anything. I'm sure it has something to do with our nurturing nature...we have this sense that this child for some reason may need us more than say, a typical (I use that term loosely) child.

I have come across one person who couldn't stop staring at Noah...he was sitting next to his sister in a Costco grocery cart sucking his tongue looking totally "different". The woman behind us was STARING at him. So I stared at her...just to let her know quietly that A: she was busted...and B: staring isn't nice.

I much prefer the people who at least have the decency to politely start a conversation over the ignorance and rudeness of others. I don't think anyone has brought out the mother bear the way this woman did...to add to it I was with my bf (his dad) and I didn't say anything to him...good thing...because he would have verbally let her know just how rude she was being...

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Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS) (May/07), Jesse Lynn (July/08 ), Baby Girl Due April/10

HAnd wrote:

Something I just noticed last night because I've been thinking a lot about this lately is IF I actually have time to talk about it I have no problem answering their questions accurately

I find it's the same for me, if I'm not rushing round after the kids or in the middle of errands I'll quite happily have more of a chat with someone about Ethan! When we go to mother and toddler groups I'm more relaxed and will often have time to chat whilst Ethan is off exploring! People are often suprised by how old he is or will see me signing with Ethan and will be naturally inquisitive. I'll happily answer any questions (whilst doing my bit for DS awareness LOL)

Ethan is also on the small side for two and we still get occasional comments on his size. We were at a softplay activity centre the other day with lots of older kids running around and a mum commented 'ooh mind the baby' I think part of it is because Ethan's not walking yet so people naturally assume he's younger than he is!

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

momof5 wrote:

I think as new parents of kids with DS we are over sensitive to strangers questions and looks.

i am really tired of this response at the grocery store: "HOW old??? he's sooooo small/tiny!!!" i just say, "yeah, he's a small fry" for lack of any better response. perhaps i should say, "yeah, he's our sweet little peanut" instead.

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wife to martin II

mom to marty III (8/6/09, DS)

"I praise you because I am fearfully and wonderfully made." (Psalm 139:14)

Quote:

I much prefer the people who at least have the decency to politely start a conversation over the ignorance and rudeness of others.

My brother has a 5 year old daughter with cerebal palsy. She is in a motorized wheelchair, does not eat solid food (only because she does not want to, she can, they are just trying to teach her to like it) and is not potty trained yet. He has been such a valuable ally and ear to bounce ideas off of since Kyle was born. Anyways he told me this once also, he NEVER minds answering questions about her. But he hates it when people treat her with lower expectations (she is not cognatively impared at all) or think my brother is mean for giving her consequences for say, something like running over someone on purpose with her wheelchair . Different coin, similar issues. His wife will pointedly verbally assault rude strangers yet is kind towards questions, akward or not. They actually prefer the questions over people trying to ignore her or openly staring and I have to agree. Maybe I am still too sensitive.

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-Heidi wife of Kevin and Mom to Nikolai-10, MaryKate-8, Sara-2, and Kyle (T21)-5 months

Etta is also pretty tiny (even on the Ds scale). She's 22 months old, weighs 20lbs, wears a size 3 diaper, and still fits into 12 month fitted (footie) pajamas, though I believe she's about ready to move up a size...

Anyway, to answer your original question, It depends on the scenario. I have gone into the Ds explanation before, but I usually just say she's "small", "tiny", "petite", "little", and my personal favorite- "fun size" and leave out the part about Ds.

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Tiff wife to Keith
Mommy to Etta May- DOB: June 1st, 2008 (DS)
Etta's Website