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Post by edugatortracy on Mar 7, 2006 12:09:24 GMT -5
I have to admit that I am one of those parents who doesn't post much for many of the reasons you described, Pauline. I was pretty good when James was small, but as the delays and gaps from his "like peers" my gaps from Unomas grew. It was a terrible feeling to be so happy for other's accomplishments and so down about what was occurring at my own home. I have felt like a failure on so many levels for so many different reasons, and as I have said before, this website is such a positive place- everyone seems so with it and "okay" with things! I have been ashamed to admit my own struggles with acceptance and have tried to talk about it more because I know I need to heal. I know one thing is for certain, regardless of my posting a comment or response or not, I find GREAT COMFORT from this site and from the families who share their stories.
Hugs!! Tracy
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Post by ethansmammy on Mar 7, 2006 12:13:00 GMT -5
When we have a baby we all have dreams for them - the sky is the limit. When we have a baby with DS the sky is still the limit - but we question what is actually possible. It's nice to see the "superstars" because they show us what can be achieved - by some - what is possible for some...
I remember when Ethan was born and I was talking to my DH about such things and he said "I don't need my son to be a genius to love him". I'll never forget it, it allowed me to take a deep breath, and think, and realize that I don't either. He has always been more relaxed than me about Ethan - therapies etc. He just takes each day as it comes. I would love Ethan to be a DS superstar - maybe he will be, maybe he won't, but think it's very important to remember that every child is precious whether high or low functioning.
Of course with any child things can happen. My brother was a normal child, very intelligent, private pilot license at 18, in university. Things started to go wrong, he was diagnosed with schizophrenia - very severe, he is totally dependent on my parents and is now 33. Is this what my parents dreamed for him? of course not - do we still love him? yes we do. It is hard for my parents and I do worry about what the future holds..... but as my mother says - that's life and you have to get on with it. He is coming from England to visit in April, with my Mother and Aunts - I can't wait!
Pauline from what I have read of your posts, you have had a time. You do your best and you love your boys and that IS good enough, nobody can ask more - the way things are, are the way things are. HUGS to you.
OK this is an emotional one and I'm rambling on - hope some of it makes sence....
Elaine.
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Post by Radonna on Mar 7, 2006 12:39:20 GMT -5
Elaine, A couple things you said were just so touching
"but think it's very important to remember that every child is precious whether high or low functioning."
That is so true
"from what I have read of your posts, you have had a time. You do your best and you love your boys and that IS good enough, nobody can ask more - the way things are, are the way things are. "
That is so true too!! Pauline You are a devoted caring mother that I admire a great deal. I remember you from when I use to be on Uno Mas and there was several times that you posted to me the exact words that I needed to here because YOU understood my life better than most people could.
Radonna
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Post by paulinemjc48 on Mar 7, 2006 13:25:05 GMT -5
WOW! I never expected such a large response. Since I started this I have been thinking about the things Nicky CAN do rather than the things he CAN'T and do you know there are a lot of things he can do. He now brings me a nappy/diaper when he wants changing. He can undress himself if there are no buttons or zippers He takes my hand and takes me to the bathroom when he wants a bath. He brings me his coat when he wants to go outside He takes me to the stairs when he wants to go to bed He gives me the car keys when he either wants to go out or has left a toy in the car that he wants to play with. He will bring me a musical toy at the first sign of the batteries running low and take me and the toy into the kitchen and give me the screwdriver He gets up as soon as I tell him his transport is outside to take him to school He will hang on to the car door if he doesn't want to get out of the car. He starts grumbling when he knows he is going to have a blood test. He will come and put his cheek up to me for a kiss when he wants something and knows I won't let him have it - he thinks he can get anything he wants with a bit of love for Mum!!! He hides behind the cupboard in his class room when the teacher says it time to do some work The list goes on.............................. Guess he is smarter than I think ;D ;D he is one fantastic young man. Pauline UK
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Post by laurasnowbird on Mar 7, 2006 13:38:59 GMT -5
Pauline, Before I say anything else, let me say this: I sooo admire you! I know that you don't see your children as a burden, but you have loved and cared for them when no one else would. I always read your health updates on Nicky with my heart in my throat and tears in my eyes. Maybe I should post more often, but I'm truly guilty of not knowing what to say sometimes. You are literally dealing with life and death issues with him, and the rest of it seems so trivial to me. You just need to come here for comfort and support. I'm so glad you posted this, because I've been contemplating a similar post for almost a week. There have been some who feel that we shouldn't post our struggles so much, that this board is intended to encourage other parents. I wonder what Michelle Mc thinks about that. We do learn a great deal here, but I don't think we will ever find a parent who comes here for counsel about a pregnancy who can fail to see that we love our children UNCONDITIONALLY. If it were me, and I were deciding whether to consider a pregnancy, I would feel betrayed if someone sold me a Pollyanna story and I learned the challenges later. And I'd also feel pretty alone, because I'd think no one else's child has the issues mine has! It ain't easy sometimes, and it ain't pretty, but is there even one among us that feels like we love our children less? Even when we're stressing, that comes through loud and clear. And quite frankly, I think it comes through most often that we are frustrated FOR our kids, not because of our kids, if that makes any sense. Many people have similar feelings about the national conventions and the DS "superstars" that it highlights. Most of our kids will never achieve those levels of functioning. And most of us are OK with that, some better than OK. We aren't too comfortable with those superstars being held up as the standard though, because it somehow makes our children seem less. I was careful when addressing that class of students at U of M to stress that Ethan isn't one of the superstars, that he has scattered strong skills, and scattered weak ones. The main message is that we need to play to our kids' strengths, and seek professionals who recognize those strengths and help us build upon them. So this has been my dilemma, and I'm curious if anyone shares it. In an effort to "keep things positive", I tend to post mostly positive things. The downside to that is that it feels like BRAGGING to me, and I hate that. I often feel when I'm having a really BAD day that I shouldn't share it here for fear that I might influence someone else's decision. P.S. I've been struggling with this since someone posted recently that we all seem to have it so together. I mean Geez, really, how intimidating is THAT? A bunch of perfect moms? Perfect people are BORING!!!!!!!!!!!!!!!!!!!!!! P.S.S. Is it becoming obvious that I feel really strongly about this, LOL?
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Post by Kristen on Mar 7, 2006 13:50:41 GMT -5
You bet he can do a lot! Good for him! I, for one, certainly do not think you did anything "wrong"! Someone said that when you have a child the sky's the limit. Trus, but just like I don't compare Sydney (non-DS) to child prodigies, I don't compare Carter to kids with DS who are superstars either. I think they are both awesome, wonderful, beautiful kids. Syd is 2 and doesn't do long division, speak 3 languages (english is sketchy!) or play an instrument. Carter doesn't talk and can't run yet. They both have many great personal characteristics that I don't often see in their peer groups, though, and although they don't make it onto a scale of excellence, they excel at being themselves. It's easy to compare - there's a boy in C's class that has the exact b-day. I don't know what his dx. is, but i find myself comparing Carter to him - how goofy is that of me? It's natural, but at the same time, if you can recognize it and put it out of your mind, no harm done. Nicky sounds awesome and like he knows just how to work it
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Post by cindylou on Mar 7, 2006 14:00:03 GMT -5
Pauline- Gosh-I can so relate to you and for that reason I hope you continue to post up when time allows. Maybe you're thinking-"But Kaylee can read a little" or "she plays basketball with her friends". I don't know what your feelings are in that regard--but I know that deep down we all struggle with wishing more for our kids. I think it is a balance of full acceptance of all our kids (typical and disabled) and also trying to help them keep gaining, whatever that looks like.
For instance, my girl is about the same age as Susans Emily and Robin's Chase. We've all communicated online for years. Their kids are much farther ahead then Kaylee academically. Yeah, I wish she could read more. Do better math. But I still really value their input and advice/encouragement. And am happy for their kids...but there's always a bit of a rub, ya know? ON the other hand--I have gained SOOOO Much insight from Radonna--and her life with Kaden is so different from mine with Kaylee. She has been a huge inspiration and life-line, just reading her stories. She's a bit contagious. ;D We haven't directly communicated much Pauline--but I have to tell you that Nick (and you) have a special place in my heart-always have. Your insight is important and valued.
Bob said "All I've ever wanted was for Charlie to be the best Charlie he could be, not somebody nor anything else. But it is sometimes hard to know just what that is and hard to come up against the fact that the best may sometimes be not all that good.
I have to remind myself not to compare but to accept. I have a neighbor who's child is the same age as my Emma. Now Emma is good at about anything she tries. She has Erbs palsey in her right arm-but it has not stopped her. She play volleyball, violin, soccer, basketball. She's beautiful and everyone remarks about it. She gets good grades without ever trying and to top it off--she is not proud or arrogant -the kindest, old 10 year old soul you will ever meet (probably mostly because Kaylee is her sister and she's learned a lot about acceptance). This neighborfriend constantly compares her child to Emma. Emma's grades-she asks how Emma did on all the tests. I never know-because I don't care that much about academics. She wants her daughter to be faster, cuter-smarter. ALL THE TIME. Her daughter gets off the bus with Emma in 3rd grade and says "you're the kind of girl that will always get any guy she wants" IN THIRD GRADE! Emma's like-"what are you talking about" (Emma's a tom boy) All that to say--this neighbor girl is extremely insecure. She doesn't feel like she meets up to the "emma standard". Anyways--as much as it saddens me that this mom compares her daughter and pushes her daughter all the time--one day it hit me. I was doing this to Kaylee. Oh, I didn't talk about it out loud-and I didn't tell Kaylee she needed to be like someone else. I certainly didn't high light her hair like the neighbor did--but I wasn't embracing Kaylee for her, who she is - you know-full acceptance/without strings attached. When I realized it--I started loving on my kid more-laying down with her at night--having time with her--not trying to work on ANYTHING. I remembered she wasn't a project. I didn't have a dead line. She was my kid. My first born. The song I used to sing to her through my tears when she was a baby "You are so beautiful to me. Can't you see? You're everthing I hoped for - you're everything I dreamed..." I began to sing that again to her. No, I don't think she's an angel. I would take away the Ds if I could--but am I lying to myself when I sing that song? You're everything I hoped for? you're everything I dreamed? No, because she is my child-and we accept them because they are. I believe in God-and I believe the Bible when it says she is created in Gods Image. I don't understand-but I believe. Sorry for the rambling Pauline-I just want you to know that many can relate to you--on all different levels-and I'm so glad you posted this because you're getting many to weigh in here that otherwise might not-
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Post by ValerieC on Mar 7, 2006 14:01:16 GMT -5
Pauline,
Kudos to you for posting your true feelings! Thanks for allowing us to be a part of your processing.
I'm also ecstatic that you stopped to look at the positive things that Nicky can do. I was going to recommend you do that.
For me...as a mom of a little girl that happens to have Ds, I try to focus on the positive things all the time. For me, it's my sanity! If I focus on what she can't do, then I'd be depressed and defeated. I would be no good for her or any of my children. That's not to say that I don't allow a Pity Party from time to time, but they only last a few short hours. No one likes to join me and it's no fun to party by myself! LOL
From time to time, I'll ask for advice on an issue that just seems to be overwhelming, or we just can't seem to develop in an area, etc. I look here for those answers. The families who have struggled through them really can help those of us who haven't been there yet. You know, the older (more experienced) teaching the younger (less experienced).
But, for the most part of the daily grind, I do look at what Alethea has accomplished and when she meets a goal, I love to come here and let you know because you know how huge the small accomplishments can be! The family here gets excited like no one else in my world ever could because they don't KNOW first hand the accomplishment it truly is.
There is this old song, not sure who sings it, not sure when it was written, but it says, "Accentuate the positive, eliminate the negative, and don't mess with Mr. In Between."
I truly try to live my life that way. I guess I am the other Polly Anna (C Bean being the other from a post long ago) on this board. Doesn't everyone live in my perfect little world?! LOL
Valerie C
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Post by cindylou on Mar 7, 2006 14:05:56 GMT -5
Pauline-- Great response! I think you did just what you needed! You looked at what Nicky can do!!! I think your post helped us all to look at our kids and accept them where they're at. ;D good for you- great for Nicky-
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Post by Radonna on Mar 7, 2006 14:08:47 GMT -5
Laura, This post hit home to me too because I have felt that way MANY times and even before when I got offline it was hard to know what to post because of how public this board is and not wanting to discourage new parents.
Here is what I come up with and I believe it with all my heart. We have the Chris Burkes and the Superstars of Down syndrome the inspirational stories that they write books about. With what a beautiful picture that is painted by "OUR SIDE" how come SO many women abort babies with Down syndrome. On Baby center there is a whole group of Anti Down syndrome women it would break your hearts to read some of the posts. What I see is the Doctors give the statistics tell What could happen in kids with Ds and then there are the public stories. WELL new parents facing this diagnosis knows what the Doctor told them and knows that they "MIGHT GET LUCKY" and have a child that isn't "that bad" what they don't know is that people that have children like my Kaden AREN'T unhappy. We don't live half lives and our lives are not a nightmare they are unique and special and ours. I look at Kaden and I know that he belongs to God. his life his purpose is all in God's hands because GOD made him exactly like he is. WHY well we all know how that WHY question can run you in circles.
Sometimes you just have to take things on faith and one of those things is there is a purpose for children like Kaden that society would see as not having much to offer. What I see is how having Kaden has added to each member of our family has made ALL of us better in some way by having him and I FEEL Kaden's purpose in everything I do or say.
It IS kind of hard when you know that Kaden is what so many people are afraid of. IT HURTS!! Because I want the world to see his value the way that I do.
The people on baby center thinks that we sugar coat things so that people think our lives are better than what they actually are. That isn't true at all our reluctance to share our lives isn't because we see them as bad it is because we are afraid of how other people will perceive them.
What we have to know is that ACCEPTENCE should never be based on ability.
I have a beautiful child. People comment to me people I LOVE so much that they couldn't do what I do. That offends me. I TRY not to be so "eggshell" but I think OK WHAT part of my life couldn't you do?? LOVE a child like mine. Care for a child like mine. WHAT is so scary about my precious little boy.
Pauline, Thank you for listing the things that Nicky can do!!!! It made me think of everything that kaden can do and smile because I know that he knows ENOUGH to meet his needs and to have his needs met. I call him ROYAL personally because he does get waited on hand and foot sometimes. They are happy little men and that is ALL that matters.
Radonna
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Post by Radonna on Mar 7, 2006 14:15:05 GMT -5
Cindy ;D Just read your post and have to say RIGHT back at ya! I have been so inspired by YOUR stories over the years! Radonna
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Post by edugatortracy on Mar 7, 2006 14:47:39 GMT -5
Laura- I was the one who posted about people here seeming to have it all together. I didn't mean to suggest perfection, but rather I was trying to convey, in part, what Pauline was saying. It is hard sometimes to read how far "ahead" some kids are from others- and how much some families do to help their little ones. I know I do the best I can with what I have (time, knowledge, patience) but , whoa, I could use improvement! Now, I know one shouldn't compare- but in our own ways we do. Anyway.... I do agree with Bob that I just want my son to be the best he can be. Now if my heart can convince my head to stop thinking so much, my world be a much saner place! Have a happy! T
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Post by YoshsMom on Mar 7, 2006 16:04:41 GMT -5
I've also been doing more lurking than posting lately. Partly because of lack of time, but mostly because while Yosh's new skills are tremendous for him, I still see him falling farther behind. When he was a baby and I shared a milestone with family they were all as excited as Dh and I. Now I call with something that Yosh has done which I think is wonderful and the response is kind of lukewarm. Then I lose my enthusiasm and no longer have the energy to take time out of a busy day to post about him.
So thank you Pauline, and everyone else for reminding me that each new word, sign or even just a glimmer of understanding is special and that this is the place where people understand that. Yosh is demanding my attention right now, but I'll be back soon with an update on my wonderful little guy.
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Post by cindylou on Mar 7, 2006 16:20:50 GMT -5
In regards to Laurasnowbird saying:
I'm so glad you posted this, because I've been contemplating a similar post for almost a week. There have been some who feel that we shouldn't post our struggles so much, that this board is intended to encourage other parents. I wonder what Michelle Mc thinks about that. We do learn a great deal here, but I don't think we will ever find a parent who comes here for counsel about a pregnancy who can fail to see that we love our children UNCONDITIONALLY. If it were me, and I were deciding whether to consider a pregnancy, I would feel betrayed if someone sold me a Pollyanna story and I learned the challenges later.
I really think it's good to share your struggles-I don't think there's anything wrong with it at all. That's what the board is here for and I'm almost certain Michelle would feel the same way. I think the only issue that bothers Michelle is when people are mean to eachother. Honest, open diaologue is what this place is all about. Kind of reminds me of when I take the kids to get their picture. Sometimes I choose the soft focus--and everything looks all shiny and a little blurry. Almost angelic- Then when I do the regular focus you can see the messy hair flying out of place and the zits..even once a booger hanging on the edge of Sams nose--but it's such a more true picture of my kid, ya know? love unomas-boogers and all-
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Post by andrewsmom on Mar 7, 2006 17:00:47 GMT -5
You are not a failure! I also have a daughter who is in kindergarten. I meet about twice a month with other Mom's from her class. All of our children that are in kindergarten together are NOT all on the same level. Some can read, some can not. Some can tie shoes, write in cursive, do cartwheels, jump rope, do multiplication, and some can even speak fluently in other languages. They are all different, and so are our children with DS. You are NOT a failure! You sound like a very good Mom who loves her children very much. My Andrew (DS) will turn 2 at the end of the month. I have absolutely no idea what he will or will not be able to accomplish. But you see...I have learned (and I'm still learning) here at Unomas that it's not totally up to me. Like I said, I'm still learning and I always fall back into "what more can I do" mode. But Andrew will be Andrew.. period.
I think Donna has the right idea..."we are a group of friends asking for and offering advise."... at any and all levels. That's exactly how I feel about Unomas. I just love it here and would never want anyone to think as you have. Please post more often and let us get to know your little ones better!!
-Trisha
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