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Post by momofrussell on Feb 22, 2008 13:14:57 GMT -5
Tiffany, you bring up something that sticks out as big thoughts for me. On one hand Russell does have DS and Autism and various major eye impairments and as a family we might be perceived as "different" or some people think things are SOOOO different in my house. So, yes, on one hand the DS and Autism consumes our lives... but on the other hand....we are JUST a family of 5 and Russell is a BOY. I think ourselves and others thought life was going to be SO different for us with Russell and even with all the adjustments, we are still just a family of 5! Other then helping Russell with his needs, we still do our regular day to day stuff as a family, still go places, etc.
We DO make adjustments for Russell and ourselves, like this year we are going to have my inlaws keep Russell while we head out for a vacation, but it's not like life as we know it ended for the rest of us, because we have Russell in our lives.
We are pretty realistic and matter of fact in my family.. I think we make adjustments, accept what is and move on with life! With all the "differences" maybe in our family... we are very simillar to the next family that doesn't have a child w/spec needs. It's funny how even though we DO have those differences, how much the same we all are.
I think I also thought Russell would be SO different mainly due to the vision and Autism. And yes, on one hand he is... but I smile lots through my days when I watch him... because he is still "my son"... "a boy"... he rough houses with us, giggles, smiles, tries to play around, TRIES really hard to learn independence, etc... JUST like ALL children!!!!
And Jessika... I am glad you are reading all of this... I know it's very raw for you still...but through little bits here and there, we can show you just what the "other side" might be like!
Hugs to everyone!!!
A.
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Post by lespring on Feb 22, 2008 13:24:24 GMT -5
Oh, I know one! All the kids who I worked with before Angela were just little kids. They were happy but had tantrums, just like other kids their age. I knew better than to follow the "they're always happy" idea, because I'd seen how typical kids with DS are in that way, and so that is what I expected with Angela. Angela's behavior is soooooooooooo not typical, of any child, DS or not. But she IS very much like her siblings! Those who know my family know I've been through my share of behavioral issues with my kids, and Angela is just following in her path. She swears like a sailor (long story behind this, but in short it's going to be part of her forever. ) She has just recently starting doing the "flop-n-drop", which is lovely considering she's 85 lbs and knows I can't move her. It's bad enough that she has now qualified for a TBI/NB waiver (traumatic brain injury/neuro-behavioral disorders) so that we can get an in-home behavioral consultant to help us figure this out. Dean and I, and all the school staff are at a loss what to do. But then she can turn around and be the sweetest, most indepdent kid. More responsible than her now adult brothers. Just don't piss her off. ;D
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Post by Emilysmom on Feb 22, 2008 13:32:25 GMT -5
There were some misconceptions that I personally had.........rather than misconceptions that someone else told me when Emily was diagnosed with Ds. As a mother, I used to worry about the whole "empty nest" syndrome and how I would handle NOT having my kids at home any more. I never wanted to be without children in the home!!! One of my first "reassuring thoughts" when we learned of Emily's diagnosis was "Well..........at least we will have ONE child with us all the time". That was nearly 17 years ago, and I now realize that Emily will most likely be moving out on us too!!!!! And I hope she CAN and WILL! I'd GLADLY live with her for the rest of my life, but don't think it's what she is going to want. And so, our prayer for her is that she will be independent enough to move out. (And LOL we do have a son younger than Emily.........maybe I can convince HIM to stay at home with Mom!)
I was also totally wrong when I thought that Emily would be happy to wear whatever *I* picked out, would happily DO whatever I suggested, etc. Where did I get that idea??? And, would I have wanted that for her anyway??? Nope. She does have an opinion of her own on just about everything, and that's just the way it should be.
One wrong misconception that we were given before Em was born was that she probably wouldn't be able to breast feed, and I was SO bummed about that. But one of the most helpful staff members at the hospital came to me the day after Emily's birth with information on breast feeding a baby with Ds and we had no problems at all. She nursed for a year, just like her brothers did.
I'm enjoying this thread!!!
Susan
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Post by Valerie on Feb 22, 2008 16:52:41 GMT -5
Hi all! Haven't posted in a while, been soooo busy! But have popped in here and there trying to keep up with everyone else. I saw this post and couldn't resist replying, seemed like the perfect thread to share this.
We had Nicholas' IEP this morning, and were discussing whether he would qualify for ESY or not. He does for speech, so he'll be getting that. But as far as education goes, he does NOT qualify....one of the reasons is he is TOO advanced! ;D Isn't that priceless?
This is one of the things they based this on. Keep in mind he is the only child with DS in a preschool of all typical children his age. Apparently, the class average for knowing upper case ABC's is 17 letters, and he knows all of the upper and lower case. And numbers, class average knows up to # 15, and he knows 20. So they can't justify him needing ESY if he's AHEAD of the class! ;D
I know, I'm bragging a bit, forgive me! Couldn't resist! I think sometimes it's not so much that they surprise us parents, but that they surprise everyone else with what they can do!
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Post by elizabethsmom on Feb 22, 2008 16:57:58 GMT -5
I don't think Joby or I ever had preconcieved ideas of what Elizabeth would or would not do. However, we had a RN in the NICU who told us "she will be very delayed... behind other children...if she can ever do what they do.....for example, it will be a long time before she will be able to even lift her head due to such poor muscle tone..." That happened approximately 10 seconds before E lifted her head up off of the mattress in the isolette and turned it over to look at us. :-) I think God was saying "wanta bet?" haha
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Post by Jackie on Feb 22, 2008 17:35:30 GMT -5
Well I am ashamed to admit...that one of the things I worried most about was HOW Em would end up looking. When I was growing up (and remember I am 60) there were very few visable people with DS in society. But...there was a girl...who had DS and sort of "waddled" behind her mother who was much older...out at our local country club pool in a very non flattering swim suit. In my mind this girl was on a 'leash'...NOT....probably because of the way she totally shadowed her mom. She was extremely short, extremely heavy, and had red sparse hair. (her mom was obviously a trail blazer in refusing an instutuion back then) And I am sure my recollection of her was colored by my young age and total unawreness of disabilities in the late 50s. To this day I regret these thoughts and have often wondered what happened to her.
So when Emily was born...I immediately saw that girl in my mind...and it did take me a while to realize that kids with DS do not all look alike, walk alike, talk alike, and think alike. Plus with early intervention and therapies all of our kids are improving their body tone and looking and performing a lot better.
However except for this...my expectations for her were extremely high...right almost from the git go. And in a very short time I stopped worrying about how she looked...and in fact seemed to get more photos of her than I ever had the other kids...LOL. And now I think she is just beautiful! But even though I had lofty expectations...she has exceeded most of them.
Jackie
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Post by dannysmom on Feb 22, 2008 19:21:18 GMT -5
What a great post. I admit I didn't know much about Ds when Daniel was born. One misconception I had was he would walk really late. I remember one of our first visits with his PT. We had just switched PT's so she was just meeting him. She said his tone was fairly good for a child with Ds. I of course was thrilled.....and told her I wondered when he would walk. She said "I've never had a child with Ds walk before 2 years old". Well, now we all know how silly that is!! LOL. I was so happy when my little man decided to walk across the room completely unassisted at 20 months old. I swear he did it just to show his PT a thing or 2 about kids with Ds. I was so happy when she said she will 'forever' remember my Daniel for teaching her a lesson. She now knows that kids with Ds CAN walk before they are 2.
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Post by momofrussell on Feb 23, 2008 9:59:52 GMT -5
keep 'em coming guys... great thread! We'll keep this at the top for a bit! a.
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Post by Jackie on Feb 23, 2008 10:47:29 GMT -5
I have had in the past people fault me for putting too rosey of a spin on my feelings when Em was born...so I need to tell you why. When Em was born at 8.5 lbs...healthy healthy healthy apparently at birth...within 3 days...she had 3 surgeries. She was diagnosed early on with a PD and VSD heart defect and thru a surgical biopsy Hirschprungs Disease (no nerve cells in her colon). All of these were potential life threatening huge surgeries in our future (and remember this was 1980). So here I was with a babe in arms who had a colostomy and then failure to thrive (remember 8.5 at birth and 9.3 at 6 mos) and the prospect of anything except her survival took a back seat!!!! I just wanted my baby to live....and LIVE she has...at 2 she was through with all of the horrible things and on the road to a healthy normal life. So when I look back and share...I need to put everything into perspective.
I guess my main fear soon after birth was that after opening my heart up to her...she might not make it.
Jackie
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Post by Emilysmom on Feb 23, 2008 11:00:43 GMT -5
EXCELLENT point, Jackie!!! I can also remember one of my own misconceptions when Emily was born. I think I had heard so much about babies with Ds being so delayed in WALKING, that I made that one milestone wayyyyyyy toooo important. In fact, I sort of felt that walking was the one TRUE test of how well she was going to function overall in her life. So, we worked SO hard with PT to help Emily along to achieve that all-important walking skill!! She crawled so fast and so well and.........SO long!!! And I was concerned when she turned 2 and was still crawling. And when 2 1/2 came along and she was still crawling, I was even more nervous!!! I firmly believe that she was just so mobile on her hands and knees and she saw no need to risk falling! She cruised the furniture for almost a whole year before she finally walked nonstop everywhere she went at just short of 3 years old. And, looking back.........did it matter, really?? She walks, she runs, she can dribble a basketball like a champ. I can even remember going to an NDSC conference when Em was a baby, seeing a young girl with Ds who looked like she was doing really well! (She seemed independent, walked well, etc) I struck up a conversation with her mom and asked her "Did she walk really early" ?? LOL She smiled at me and answered, but I'm sure she must have wondered what made me ask that! Susan
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Post by liasmom on Feb 23, 2008 20:09:05 GMT -5
I honestly thought that our life as we knew it was over. I thought she would NEVER talk, also. Neither is true at all. (She is one that talks your ear off 24/7). My experience with ds prior to her birth was at a State Hospital, with adults who had been institutionalized their whole lives. They did not talk or do much except self- stim- nothing I'd care to write about. Now I realize they could have done so much more if they had been part of a family. Nancy [img src="[/img][ iIMG]http://i251.photobucket.com/albums/gg303/liarossmom/liabbfeb082.jpg"]
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Post by sandi on Feb 23, 2008 21:47:45 GMT -5
That makes me sad that people with DS were put in an institution. I am surprised that kind of stuff happened awhile ago. My social worker has worked with kids with DS for a long time and she worked in BC when kids were institutionalized. I can just imagine what she saw. Sad really.
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Post by Kristin on Feb 24, 2008 0:56:29 GMT -5
Misconception #1-She will sit in front of the television, be lethargic, but happy. While I'm greatful this isn't true, I'd like to know when she will sit still!
Misconception #2-all kids with DS should be on the same track and in the same single class in school. Our kids are not made by a cookie cutter! This is one I still fight. I keep reminding the school that she is an individual, and should be placed where she academically needs to be. Our kids are as individual as any! I constantly remind them not to underestimate my child!
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Post by chasesmom on Feb 24, 2008 18:46:20 GMT -5
Oh boy....I just love this thread!!! I was told children with DS don't lie...you should hear Chase blame his brother or the dog for things...lol! That thick head of hair that needs cutting every week...was suspose to be thin and sparse :-) He was suspose to be my constant friend and companion so how come when I open his door to ask if he wants to watch a movie with me I get "grrrr leave me alone! as he sits on his bed and sings at the top of his voice to his CD's? LOL! I was told he wouldnt learn to read, he would wear diapers, and I have to laugh, Chase was reading at three, granted it was simple sentences, but it was reading and he was totally potty trained by 4. They said he would be complacent and always happy go lucky...ROFL, he is NOT! He has 15 year old hormones just as he should have, he loves girls and says he is marrying Emily, Susan's daughter and if you ever saw them together, you'd believe him :-) Chase is a boy first...excuse me, I mean a young man first, and he has disabilities that cause him to have challenges in his life, but what they told me about him, about the DS....they were/are so wrong.... Chase, my son, he rocks! He is more alike than different. He loves Hockey, football, we fight over which team is the best and should win :-), he loves music, the louder the better, he takes control of the remote, he loves pizza and nachos, chips and dip, playing vidoes and hanging out with the guys, dancing and playing on the computer, he is your average teen and he is my son, d**n I love this boy!!!! hugs, Robin
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Post by Renee' on Feb 25, 2008 11:53:16 GMT -5
I have to say I also was one who thought children with Down Syndrome are always happy. I even get people saying well, you are so lucky, people with Down Syndrome are sooo happy all the time" That is NOT true. Lauren has an attitude almost daily!
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