You've come a long way baby! Misconceptions...

[momofrussell]

Ok... I have something we can do! I know that we all had our own preconceived notions about DS and our child when the DX was first given to us. Even though we are all at various stages of our paths.... why don't we share what things our children have proven to us wrong on thinking! I am sure we all have some positive experiences to share!

Someone start... I will come back later LOL



A.

[Tammy]

First one... when given the diagnosos at 30 weeks pregnant, I was told Lewis would be very small and weak, I would HAVE to have a Caesarian delivery as he would most likely NOT survive a normal delivery...

I mostly believed them, but I poo poohed the Caesar... opted for normal delivery, was induced at 36 weeks...

My poor helpless tiny baby arrived in the usual way (and survived the trauma!), at 6lb (hardly small for a 36 weeker!) Screaming loudly (hardly weak eh?)

That has set the trend for the rest of Lewis life so far... If they say it cant be done or it wont happen... it is like Lewis needs to prove them all wrong...

I stopped listening a long time ago.

[Renee']

Well, I as I stated before an individual told me when I was pregnant that my child would do nothing, be nothing and learn nothing. Pretty much said she would be a blob.
I never believed that.

Then at 4 months old they came out of the operating room after 9 hours of surgery to tell me there was nothing more they could do. She was gone and they were going to bring me to her when they removed her from the heart bypass. They returned to tell me that she indeed had not passed on but she only had the heart rate of 20. So they were going to bring her to ICU so I could hold her while she passed on. Well, 12 days later Ms. Lauren was home and enjoying the good life with a repaired heart. She has been keeping me on my toes from that day on.

She can play piano. Twinkle Twinkle, Move Away, London Bridge and Mary had a Little Lamb all by memory now.
She can spell and read some.
She can remember people by name better than I can.
She is funny, silly and quit witted.

She has proven critics wrong from day one.
I too stopped listening a long time ago

[lespring]

Before having Angela, I had worked in a center-based respite program for several years. We had lots of kids with DS (most under the age of 6) and they were largely non-verbal. I assumed that not only would Angela look like most of them, but she would talk (or not talk) like them as well.

Well, Angela talks incessantly, and she doesn't look like ANY of the kids I worked with. LOL

Oh, and some of those kids I still have contact with. They're all adults in their late 20's now. What I didn't know back then was that none of them had the early intervention services that Angela got. In fact, there were lots of things our kids get that they never had the benefit of.

[Chris too]

lespring said:

...
Well, Angela talks incessantly, and she doesn't look like ANY of the kids I worked with. LOL

No, she looks just like you, Leah. Such a beauty!

I've not had any negatives spoken to me, and the thing I cried about when I heard the dx was that she wouldn't get to be a mother. In my life, it is among the greatest joys to be a mom, so I took it hard that she'd not get to have that. But she'll have her own joys, as will all my kids. It still makes me sad though, so I guess I haven't come very far on that road... *sigh*

[Renee']

ngela talks incessantly

I thought I was the only one who had a child with DS that NEVER quits talking

[lespring]

If Angela stops talking, she's either asleep or deathly ill. It just doesn't happen. She even talks in her sleep, and sometimes laughs full belly laughs while she's sound asleep. The talking drives me crazy.....really....I'm loosing my mind!

I have to say though, in the last few weeks she's come up with the goofiest things! Like tonight she was reading to me and I complimented her on a good job with a difficult word. Her response? "Cha ching!"

Today in the car she told me that her friend is going on a roller skating field trip on Friday. I told her "In a couple weeks you're going on a skiing field trip."
Response, "Say WHAT? You gotta be kidding me? That's DA BOMB!"

[Googsmom aka Jennifer]

I really can't think of anything someone said or that I thought that Brook wouldn't/couldn't do. I knew it would take a bit longer but I didn't care. The specalist said "we need to learn sign language" I said "no she will talk" and she does. (althought I think it's remarkable the kids who do know how) The PT said this, that, and the other and I said "no she will do it" and she has. Brook is my angel baby. I prayed so long for her. She will play in the dirt. She will play w/ sticks and rocks. She will look for ants w/ my nephew. She will do everything I did when I was a kid. (not eat rabbit poo though ) She will do everything every kid does. I treat her no different than any other kid who crosses my path. She is a kid.... who just happens to have DS.

[jelanismom]

luv that Jennifer, and you're right "happens to have"Ds

For me, it was my own crazy notion out of frustration..I "thought" he'd never walk...yes I just felt that way and this is why...he crawled for 3 years and I had to carry him everywhere and I was so worried... but then by 3 years 10mos he started to walk...I was the happiest and most tired mama chasing him down.

I never had any preconceived notions after his dx, I really was too obsorbed by him surviving out of the NICU...I suppose I secretely wished he becomes the first child Einstein prodigy with Ds ;D

[Jessie]

I must admit I was one of "those people" that thought that everyone with Ds was happy all the time. I know, I know, I was so wrong!!!! LOL

I will never forget the look on Brian's face during our first official date when he was telling me about Jason. I had said, "Oh yeah people with Down syndrome are always happy aren't they?" The look I got back was, "Are you crazy woman, you haven't met my son yet!". LOL Now I know Mr. Grumpy Pants all too well and realize I was dead wrong.

That sounds like a negative, but it's not. I've grown to love Mr. Grumpy Pants and he's not quite as grumpy as he used to be.

He is also the most amazing problem solver I've ever met. I don't think, before knowing Jason, I would have ever thought someone with a cognitive delay is soooo CAPABLE of so much! He surprised even his teacher and principal with how much he did improve with many skills since his previous 3-year eval. Don't let anyone tell you that kids with Ds don't progress much after they hit puberty!

One other thing that continually surprises me about him is how funny he is, especially with basically being non-verbal. He's actually been voted class clown at school and 'most likely to be a comedian when he grows up' from his camp buddies. Even other people see how funny he is even though they can't understand him verbally - weird huh?

Jessie

[sandi]

Angela has DS?

[sandi]

Well, I must say, that no one so far has told me anything negative about what Cassie will not do. Maybe its because my pediatrician has a 3 year old daughter with DS. I am blessed to have her. My social workers that come to see Cassie also go to see my ped's daughter as well. So... so far so good here. I know it will take her longer to do things, but I also know she will do it sooner or later. Cassie is 10 months, had open heart surgery at 5 months. She doesnt really like lying on her belly for to long. So she doesnt really move that much when she is on her tummy. She rolls from tummy to back good, but doesnt roll from back to tummy very often. She is sitting on her own for a little while. She is very loud and chatters all the time, and yells, hehe. One day, she will just get up and go.

[tiffany]

I think what stands out in my mind is that I thought she would be soooo different than my other kids. She isnt!! She is just a part of the family! I often forget she even has DS!! She is really smart too! She can sight read, do simple math, write her name and surf the net!! I am so proud of her! She also LOVES music! The louder the better!!

[damarasmom]

Well, I have not had the experience of being told that Damara "would be" or "wouldn't do"...we have been very lucky to have great professionals in our lives that always said..."we just don't know what she will do, wait for her to show us". But when she was born and we were told she had ds- yes we found out at time of birth- and then a few hours later were told she had 2 large holes in her heart, that's when my own mind started to put limits on her. I thought she wouldn't make it, then after surgery I thought she will not walk or talk or be able to attend school...
Well....I say with such pride that she has proven me wrong on every thing! I am glad to say that I no longer have any preconcieved thougths about her ability to do anything! She has shown me that she can and will do what ever she darn well feels like! We are such proud parents of this wonderful girl-
And as you all know...her achievements are always more exciting because she works to hard to get them!

[faithhope]

Thank you so much for this!!!!! I really needed this, I will remember that only I can put limitations on him and stop his potential. He is a baby who will grow to be an active little toddler and then a talkative little boy, and so on. Oh by the way, Angela does not at all look like she has ds!!!! She is beautiful ( not that kids with ds aren't beautiful, they are). Be careful with her, the boys are going to go crazy!