Interested in what you all have to say....

[CC]

Do you ever have anger bout the DS not the child but the DS?? KWIM??

CHRIS is 12 and I can honestly say I have never been one to think Colin or I were sooo special that we were chosen to have a baby with DS, honestly I think thats just a nice thing to say to one to get thru the day.

DS yes may be easier then some disabilities but even just DS can be hard for the child and I do have anger toward it. Personally I wish it did not exist, does that make me or others that feel the same way, Bad people??

Just wondering...

CC

[Monique]

Puleese. I hate when people say we were "chosen". Thanks but I never asked to be the martyr.

I always wonder and wish I could just see what Jameson would be like for one minute if he didnt have DS. What would his words sound like, what would he tell me he wanted to do if he was physically able to do anything. What would his favorite foods be if he wasnt restricted to a pureed diet. Would he have a wink in his eye or would he by a shy quiet guy. And yes, I would even like to see what he would look like if he didnt have the DS features in his nose and eyes and mouth.

I know that DS is a small part of Jameson in alot of ways but I hate that it does take away some of things he may have wanted to be. It's my job to try and help be all the things he wants to be.

Are we bad people? I think we're just human. And I'm okay with that.

[nica1]

First I must say I do realize my situation is much different than yours, you see we adopted our son. But, I do know that my husband and I both said if one more person tells us how "special" we are for adopting a baby w/ DS we were going to strangle them!!!!!!(how's that for special) We never intended to adopt a child w/ special needs, never even talked about it, but after 5 yrs. of trying to conceive (almost 2 yr.w/ fertility drs.) We just wanted a child. I was working in special ed. as a para for a little 6 yr boy w/ DS (oh my gosh he is now 14!!!) There was also 4 others w/ DS in the classroom that I worked in. When we decided to "LOOK" into adoption, after one phone call to the agency they were going to send me out info. and by accident I was sent my Adam's info. ( I KNOW it was not an accident, it was destiny. I was always meant to be Adam's mommy I believe this 100%) from the moment I opened that envelope I knew this was my baby, my son. My husband on the other hand thought I was crazy and had never meet anyone w/ DS and flat out said "NOWAY, Never, No how" Finally he agreed to be open to it as long as I did not pressure him while he learned about DS. Long story short one month later Adam at 31/2 months was our son. I have one biological son I always felt I had a special bond w/ him because I carried him for 9 months in me, but I learned you can have that indescribable bond w/out carrying a child in you. But we hated when people said we were so special to have done this. We were not "special" we were finally blessed with the baby we had been praying for, for so long... I have always for some reason been drawn to people w/ DS even when I was growing up there was a little girl that went to our church that I just loved. Don't get me wrong Adam is now 6 1/2 yr. old and boy, do we have our days!!!! Along with extra special, extra sweet, extra cute, he is extra stubborn, extra naughty, extra work!!!!! But being the mom of also, a 17 yr. old boy, you know what this is HARD!! I worry so much for him in very different ways. Sometimes I feel like we were put on this earth to figure out how to live, love, and get along. And personally I don't think with all or our technology and knowledge we have come very close to figuring it out. But when I spend time w/ my child and friends that I have, w/ DS you know what I think they are superior to us. They have figured out the real important stuff. I do wish that all the health problems did not exist, and that the world would be more accepting of all people, And that things wouldn't be so hard for Adam and others w/ DS. Does that make you or others bad people I don't think so at all. But I can't help but love the innocence and purity that oozes out of those w/ DS~ does that make me bad? no, we are just all trying to figure this thing called life, I guess Monica

[Chester]

No I can honestly say I haven't ever thought of our little guy not having DS....or the DS being something apart from him.

HMMM....I'm going to have to think about this one, it's a deep one......but that sounds kinda like my parents being upset that I am a girl when they were told I was going to be a boy? My name was going to be Darryl. She has told it to me like twice in my 30something years of life. I wonder if she ever wonders how things would have been different if I would have been a boy?

We had a big full day today at the local amusement park and my body hasn't quite come off the rides yet, so I'm having troubles sleeping. This will be a good question for me to ponder.

[momofrussell]

No.. not the DS.. I do not get angry for that or ever wonder about Russell w/o DS...

BUT...

the Autism... OMG... I DO wish that was SO not here!!!! THAT is the part I have a problem dealing with. I see almost all kids w/DS and wish Russell JUST had DS... so I would love for the Autism to not be in the way so much of Russell's daily life, and in the forefront daily, with his behaviors, lack of communication, no gestures, no pointing, no gazing at mommy... ect.. you get the pic....

When we were just in Louisville at the waterpark the second day, we handled Russell ALOT better in the water then the first day. He would sit on the 2 man raft in the wave pool and I would hold him. Susan and Robin were so TICKLED at how EXCITED he was. Now, I KNOW he was excited and I was happy he was happy and that the day was going so much easier then the day before... but his behaviors to SHOW us he was happy is, well, is a VERY Autistic trait. Meaning, even though some kids w/DS may do what he was doing, I see it in Autistic children ALOT and really have never seen another child w/DS do what Russell does. So, Susan and Robin would say.. "Look he is having such a good time" and they loved to see it... but I said this is the part of him I have a problem with. Susan said she knew that.. and I do know he was happy... and I really don't MIND the stares... but we get LOTS of stares when he does it incesantly. He does that stiffening of his body with his arms and legs and tightens his jaw in a smile and FLAPS HIS ARMS and makes this WIERD sound. Personally, I know Russell is at his happiest this way.. and could also leave that trait at the door! I have very mixed feelings about his Austistic traits.

As far as feeling choosen or "special", Susan and I have talked about this... and I do feel that God gave me ALL my kids.. and that he DID give me Russell for a reason.. he gave me ALL my kids for a reason I do feel honored (and special) to have a "Russell" truthfully.

Hey Chester the non-sleeping cat LOL, with lack of sleep you have brought up a very good analogy actually. I never thought of it that way....

A.

[andrewsmom]

Anger toward DS??....OMG YES!!!!! I see my 2 nieces playing, and walking, and eating "regular" food and yes I get mad. I too wonder what Andrew would look like without DS. Would he look like my first son, my scond son or would he look more like my daughter? Although they all look alittle different, you can tell they are from the same family. So who would Andrew look like the most?
I used to think I just felt sad, having my own "pity-party" in my head. But I think mad descibes it better. Mad that Andrew can not walk, talk, or eat all the things the other little ones his age can.
Bad people??.... No. Just loving parents who want the best for our children. Ofcourse we ALL would want our children to do everything age-appropriate. Walk, Talk, play, etc.

Andrew is only 16 months, and (since we are being honest) I have been VERY mad lately because he can not walk. I get even more mad when I try to think of the future. Will he play any sports? Friends? Graduate from school, etc. It's not easy.

Now I know, for those of you who probably want to jump down my throat right now, being this honest isn't easy. But this is how some of us feel. I love Andrew with all my heart, and I'm sure everybody here feels the same. But geez, sometimes enough is enough.KWIM?

I know, I know, He WILL get there, just at his own pace. oh well....

cc.... Boy did you get me going, I could talk about this all day. Thank you for being so honest. It's nice to hear honesty. I think I just let out what would have cost MILLIONS at a therapists office!! LOL!

Let me just say (I promise I will stop after this) lol, I LOVE my little boy with all my heart. The anger is because I love him so much and want the best for him. I NEVER want any of my kids to feel sad that they can't do something, or lonely, and most of all, I DON"T want ANYONE feeling bad for my children. KWIM?

[rickismom]

CC, thank you as always for the interesting questions....
One of Rickis neices is a bit over her age, and the next two years behind. I look at them, thinking OMG Ricki could have been like that--- and yes, I do feel if not anger, sadness. And maybe anger. I believe that this is all for a reason, but as I see what she misses out on, I do feel at times a
very big sense of loss.

Monica, once I was at a meeting for parents of children with DS and everyone started oohing and awing over someone who had adopted a child... I got so MAD I stood up and yelled at everyone for not giving themselves as much credit for not giving their child away...PEEVED....

[meghans_mom]

CC - yes.
I love Meghan with all of my heart and I am very proud of her both because she is my daughter and for what she has accomplished.
But do I get mad at the DS - or something...not at the DS part of her, just the DS....YES. I get mad because I think of the what ifs, and what *I* might miss out on because of the DS. Please do not think me selfish here. Like I'll never have a grandchild that she'll give me...I won't know what her children would ever look like (I know, had she been
'typical' she may not have had children anyways) I feel bad sometimes because I think of what Meghan might miss out on, that she'll feel bad about missing -- when she's a teenager and maybe isn't invited to the prom, or when people she was friendly with in 4th grade start snubbing her in 7th grade because its not "cool" to be friends with her. I get mad because of the hurt I feel and the hurt I want to protect my precious daughter from.
I dont so much mind the stuff that comes later than sooner usually...but I do mind that no matter how many times I explain it, Meghan does not understand that it is dangerous to run away from me in the parking lot, or the store...
I get mad because I feel that Meghan always hasn't had a typical childhood....she's been in school since 6 weeks old! She, at 4, spends a very busy day in preschool (which she wouldn't have if she didn't have DS...she would have been home with ME!) gets shuttled to therapy afterwards...does therapies at home...she can't always just relax and hang out or play, because there's somewhere else she needs to be.

anyways - i could go on and on...interesting topic and good to get me thinking! laurie

[Debbie]

You want a different perspective? ;D

Having grown up with Down syndrome and living with it can be challenging in itself. I had some bad experiences as a child and so therefore I grew up withdrawn and shy. I had memories of being rejected and so therefore I was angry and had a chip on my shoulder. Experiences can do that to you.
I was angry at having Down syndrome. I didn't think it was fair. I was treated differently sometimes. I was kind of slow in moving and learning so I experienced people some times sighing and having to explain something to me again. I was a very angry child and young adult. I got so tired of people talking to me like a child. I get tired of the Down syndrome and trying to explain why I couldn't do something.
Having Down syndrome is only a part of who I am, I am also a person who has her own tastes, interests, dislikes, disabilities, and quirks. I would talk to Mom about it all the time. Why people would stare at me because of my rapid eye movement. My eyes move in all different direction's and I can't control it. I would wonder what I'd be like if I didn't have Down syndrome, what kind car I'd drive, job, and future. Adult's who have Down syndrome may not always express these thoughts but I am sure they do have them.

I don't like that statement where people say,"special people." If I am special then I think it should be because of who I am as a person and what I can do not because I have Down syndrome. It is my personal opinion that a person should treated as a person not by what they have. If someone says to me, "I think you are special because you have Down syndrome" then I would have to say, "No, I am special because God loves me as I am." He is one that loves unconditionally then I would tell that person to read Psalms 139.


Okay, I am off of my soapbox! ;D



Debbie, Gifted Mosaic Down syndrome

[CC]

THANKS Gals for each and everyone of your responses I have read each of them and enjoyed hearing ALL your thoughts and feelings.

Its sooo cool to be able to share and even thou some of us think different bout things, its nice to know its OK, no one is right or wrong ;D Feelings are just that feelings and its OK to have them, least in my opinion

CC ~

[Kristen]

ITA that feelings are fine to have. have you found a way to control the fleeting thoughts the cross your mind? I haven't! I have had some very hard times with Carter having DS. I wish no one had to expereince the frustrations, difficulty and disctiminatin that it brings. If we could have DS without the negatives, that would be wonderful by me, KWIM? I hate to say no one should have it because to me it has an air of not good enough. I have gotten mad at it. I have hated it. After C was born a shrink I kept sending myself to and kept telling that I LOVED him so much, but this *HATE* for everything that happened to us and him having DS was bigger than a mother's love for her baby at it was exhausting. She said one day the love for him will be bigger than the hate. That is when things will turn around. SHe was 100% right. It took only a couple more weeks and it started turning. THe love was bigger and at the risk of sounding like a total sap, that is what I remind myself of - is the love bigger right now? Always yes. Well then it's fine. Yes, I still have bogged down and sad feleings from time to time, but never bigger than how much I love him and that keeps me grounded.

[CC]

KRISTEN you said "have you found a way to control the fleeting thoughts the cross your mind?" Speaking for only me, YES, what helps me the most is acknowledging the feelings, letting them out and talking bout them and knowing Its OK to have them For me talking bout things sooo helps relieve the stress that comes with having a child with a disability, hence why I am a regular poster here, it HELPS

CC~

[Claire]

In simple terms I love my son Adam but I hate the DS. Not because it interfeers with our life but I sometimes wonder what the extra potential could have done for him. All that for one little chromosome.
Hope no one takes this the wrong way cause we do love Adam with all our hearts and some days we don't even think about the DS anymore so I guess that's a good sign.

[Valerie]

I can't say that I HATE the DS. Hate is such a strong emotion and uses soooo much energy. I can say I don't like the DS and the issues it's caused for my son. I could have done without seeing him go through two surgeries before he was 2 yrs old. And of course I wonder what the future will hold for him. And it's hard to watch your child struggle to accomplish what comes so easily to other children.

I also have wondered what he would have been like without it. I do see a lot of his older brother in the way he acts, so I often wonder just how much like him he would have been.

BUT...he is who he is, and I love him whole heartedly! I do not feel like he is a burden in any way. Yes, my life has changed, but let's face it, having a new baby after 14 yrs is gonna change your life, anyway! I can say that boy brings smiles and laughter into my life everyday, and I thank God every day for him as well as his older brother!

[Jodi]

CC ~

I think of this in terms of all medical problems - I don't think anyone is content with the negative impacts, however little or significant.

I think that many of us learn to cope with what we have. Some do phenominaly well and go on to impact the lives of others in a positive way. Others, like my co-worker, take it day to day.

DS has changed who I am and how I view many things - for the better I guess it just again depends on the person and their outlook on life.

Being angry with the DS... hmmm... well, sometimes when Ryan says things it comes out sounding completely like it shouldn't, but I find I rejoice in his attempts - I rejoice in Ryan. I know it's the DS causing this - So I'm getting joy from Ryan, but I tell ya, when I stop and think about it, no, I really don't like the DS. Let me ask this, and it might come out all wrong, but what the heck. What if he had cancer (God forbid!)? Do I sit there and say... well, it's a part of him, and I wouldn't want to change who he is? Heck no... get rid of it!

But that's just my humble opinion.

Jodi