Just sitting here thinking.....

[Debbie]

Since we all are being honest here.......I do have struggles myself. I will tell you of one that is the constant, overpowering problem I have. Stereotypes and attitudes of other people. They can say the darnest things sometimes especially those comments that can really offend but in an offhand way. I guess I come across as a person who may not fall into what a person must look like that has Down syndrome. Now my Mother will say I am slightly affected physically. And because they are ignorant they can make some rather strange, offhand remarks. When they meet me and hear me talk they just don't believe me. It is a struggle because I do have some limitations that are not often seen.

I struggle with low self-esteem as well. When I went to the last Down syndrome conference, the National Down syndrome Society one that was held in Washington D.C., I was constantly aware of the competitiveness from the parents. When they were told I had Down syndrome the almost first questions they were to ask me was, Did I have a job and what did I do? You are
identified by what you do in your life you know. Their grown child is usually working or doing some type of community volunteer job. It was as if they were asking what do you do and saying my son or daughter does this. Do you? I think it is really normal to compare yourself to others. It is something we all do when you get right down to it some time in our lives. I am not saying that is good or bad I am simply acknowledging this. I met some really nice people at the National Down syndrome Society Conference that summer. I just felt out of place.

I struggle with vision limitations. I have some health problems. Mom says that some of them could be due to my Down syndrome. You just never know.

I don't see myself as "highly functioning" at all. In fact, I just see myself as a person who can do alot of things for myself but I still need lots of help in other area's. I struggle with finding my place in my community.

I know one thing for sure though. I know who I am and even though I am not sure where I am going I am okay!
That is all what matters to me. ;D

Pauline,

I think you are a terrific Mother! You are not a failure. You are simply a loving, caring, Mother. You know, my grandmother's name was Pauline. She was called Polly sometimes.

[Deannalee]

Pauline, please don't think of yourself as a failure.....be proud of yourelf for what you have accomplished that many others would not even think of doing. I never feel as if I am a failure with Justin, but at times I feel as if I may be missing something. At 3.....Justin can't walk, only says mama, and is 100% tube fed. He is so precious. Many people wonder how I do it 24/7......but I just do it because I love him and he needs me to do it.

I am not a lurker here either....there are times I am just so ding dang busy I can't get on...LOL!!!! The past 2 weeks all of us have been hit hard with colds, stomach flu, etc. Justin has yet another sinus infection which landed him on rounds 7 and 8 of antibiotics....then his ears started draing blood and pus!!!! EEEWWWW!!! But I do the drops and clean out those goobers.

We....the parents of more challenged children.....;are not failures....we were given this job title because God knew WE could do it....not the person down the street.

Cheers!!

Deanna

[donnita]

This was on the Indiana Ds Foundation loop that I am part of:

"this show will be on pbs in April (pasting it in below). Don't know when; it's not on listings yet. I think it will be interesting to see the story of the positive view of this man with DS who is severely intellectually disabled. I love hearing all of the DS success stories, but I do think we as a community sometimes neglect the stories, concerns and joys of families dealing with DS at the other end of the spectrum. If I find out that it's going to be on in Indiana and when, I'll let you know.


The pbs film description:
"The Teachings of Jon" is an insightful, soul-touching and funny documentary about my brother Jon, a 40-yr old man, severely and profoundly affected by Down syndrome. He has an IQ of 20, doesn't talk and earns less than $13.00 a year. Although Jon may never accomplish much in this world, he has an important purpose here... not necessarily to learn, but to teach.

My parent's biggest fear was that having a child with a mental disability in the family would bring everyone else down. In fact, the opposite is true. "The Teachings of Jon" shows how the "family secret" locked away in an institution for the first 7 years of his life became the family treasure, teaching my family the most important lesson of all, how to love.

From the opening shot, "The Teachings of Jon" offers an up close and personal, no holds-barred, no embarrassment, no shame look at what it's really like to live with someone who is severely mentally retarded. "The Teachings of Jon" is about celebrating Jon exactly as he is, and how we as a family allowed ourselves to change and grow and succeed because of him.

While being compelling and entertaining, "The Teachings of Jon" teaches families affected by disabilities and general audiences alike that when life gives you a devastating blow and you can't change your situation, what you can change is how you think about your situation. This inspirational story of a family's journey is about honesty and redemption, acceptance and growth that offers people hope."

[Debbie]

I know a woman who has a son by the same name and how it is spelled. Her name is Ruth. I can't begin to know of how old her son, Jon, is now. She wrote a book about him. I am thinking the title of book was something like that. I will have to look for it. It is almost like him to a t! He is severely retarded too. The only thing is that I don't think he works, but, you never know, maybe he is.

[CC]

ALL our kids here at UNO and I mean ALL are "SUPERSTARS" if you ask me

To me UNO is a support group and one that is much needed as we are all on this journey with DS in one form or another. With DS comes struggles, they may not all be the same but they are still struggles. I have always said and thought its important for all to be shared, the good the bad and the ugly cause that is life in general. If all were only good, none of us would be hear at all, least in my opinion.

I think its important to feel free to share any and all, honestly where else can I go and shout out my happiness for Chris with how well he is doing at skiing and just a few posts later scream out YIKES he is 13 and having a melt down at the docs office. I mean thats Chris a complete mixture, KWIM

I for one hope anyone that is dealing with DS can feel free to come here and say what ever they need to and not worry or feel they can't share for fear of scaring someone. A support group to me is where you can be free and its OK.

Let me share that when I first came to UNO I will never forget reading one of Robin's post and something she was dealing with Chase on and I was like OMG thank you lord that my son is not the only one. Robin made me feel its OK and if not for her honestly I may have crawled back into hiding.

Pauline I think your thread was one that was needed to be out there to remind us all, one child is no better then another they are ALL special and shine ;D I honestly mean that.

Being Honest and sharing it all not just all the good or all the bad is to me what makes a SUPER Support group and what keeps me here

All that being said OMG Pauline I too have many a night sat and cried wondering what the heck did I miss with Chris in certain areas and you know what I didn't miss a thing. Our kids our who they are.

I was told by my one of my neighbors when my guy was born "OMG look at Chris Burke and what he can do, there is soo much hope for your Chris" Honestly I was turned off by that statement, nothing against Chris Burke BUT I just wanted and still want my boy to do the best he can and be happy not make him into someone he is not and not think I or he failed cause he is not the next star on a TV show. TV show, working in an office, or workshop or not working to me is not what matters, what matters is the child/young adult or older adult is happy and doing the very best they can. Thats all any parent can ask for, least I think that

HUGS to you ~

CC ~

[Jessie]

Debbie, Debbie, Debbie, you are just like the rest of us my dear!:

"I don't see myself as "highly functioning" at all. In fact, I just see myself as a person who can do alot of things for myself but I still need lots of help in other area's. I struggle with finding my place in my community.

I know one thing for sure though. I know who I am and even though I am not sure where I am going I am okay!
That is all what matters to me."

I'm sure we have all felt this way - I know I have many times!

Thanks for sharing your perspective.


Jessie

[Valerie]

Oh, Pauline, I was so sad to read your first post and think you might truly feel that way! You are in no way a failure as a mother! Not even! You love your kids and do everything humanly possible for them! How could that be considered failing? But I was so glad to read further and see all the positive things you had to say! ;D

Hang in there, we all have rough patches where we're wondering if we're doing the right things. Not just with our kids, but really with everything in life! Just know that you are truly doing a wonderful job! Never doubt that!

[cindylou]

Pauline-I hope you are doing okay?

Debbie-in regards to your writing:

I struggle with low self-esteem as well. When I went to the last Down syndrome conference, the National Down syndrome Society one that was held in Washington D.C., I was constantly aware of the competitiveness from the parents. When they were told I had Down syndrome the almost first questions they were to ask me was, Did I have a job and what did I do? You are
identified by what you do in your life you know. Their grown child is usually working or doing some type of community volunteer job. It was as if they were asking what do you do and saying my son or daughter does this. Do you?

I feel so awful that you would have to feel as though you're always being evaluated and it makes me think that our own kids probably feel this way but are unable to express their frustration about it cleary (though behavior can certainly be an indicator when their speech is not their best form of communication). You know how you can tell by your 'feelings' if someone is accepting you - or working you-evaluating you, analyzing you? I feel that Kaylee senses this in people and finds it disheartening as well..

[hidyperson]

Debbie, I understand the frusatration and annoying repetitivness of the question 'what you do' and how it feels for you. But we ALL get asked this, and we are all intitially defined by our answers.


My favorite is to say that I'm a zoo animal. I go in and just do whatever I'd do all day anyways. Not a bad thing, and you do get used to the staring, but I don't like it when they throw peanuts. - Jeff

[gloriaelias]

Hi Pauline,

Girl you hit this nail right on the head. I come here EVERYDAY and read and learn, but I rarely post. I feel EXACTLY the way you do. Jacob is almost 4, doesn't walk or "correctly" crawl, doesn't feed himself with a spoon, communicates where my family knows what he is saying, but doesn't sign or anything. His favorite and only word is "mama" ;D . I read about all these wonderful things that other children are doing that mine isn't. Of course, I blame myself for that, even though I know I am doing everything possible to help him. I just keep on going and only post when I can offer anyking of advice or insight to something, which is very rare ;)but I have learned so much from this sight that I will always keep coming back everyday.

In short Pauline, we are not failures and in our hearts I think we know that, it just hurts us to the core that we can't help our children anymore than we do. God bless you and here are some hugs going your way. You are an awesome mom. Don't forget it!

[chasesmom]

Oh my goodness, if only I could line everyone of you up and hug you guys so hard......this is why I came back to unomas, this is what unomas is about.....and I adore everyone of you!!!! ;D
You Miss CC 8-)have made my heart sing today. I have so many times questioned myself...maybe I shouldnt post about Chase and our struggles with him, fearing it will cause people fear, not wanting people to think negatively and then today....... seeing your words, that hearing about Chase made you think, yes there is another child like mine, well CC, I just want to bawl with joy. Never again will I second guess myself, and I will start posting Chase stories again now, I swear I will and not worry about what others will think. This is home and this is where we all need to be able to share about our babes, be they 6 months or 60 years old, whether they are super smart or average kids with DS or children with DS who struggle more then others. We all need to be heard, we all need to share and not fear what others will think.....and you Miss Cindylou had me laughing, the emotions I went thru reading this thread were amazing, from sad after reading Pauline's first post to reading your first post Cindy, you left me laughing because indeed I have always envied what Kaylee has that Chase has not, the friends, the acceptance, the ability to play in the neighborhood, the sports she can do, the cheerleading she participated in with her sister, heck, LOL, even when you said she took a shower by herself, got dressed and came dowstairs ready for school, it blew me away, those are things I have always wished Chase could do. Susan's Emily, I have always wished Chase could be like her, so independent and able to go places and do things, I mean, Susan can actually send her into the store by herself and let her look at things and she does!!!!!! She...at the hotels we go to can actually go from room to room, even on different floors and find her way around, and come back and act appropriate,,,, and sits in her room and sings and plays teenage msic, not barney music like Chase plays, ....that so blows me away, and then there is CC with her Chris..he can ski!!!!!!! He SKIS!!!!!! Fat chance Chase would even ever try it. And the sports, I have always longed to see Chase play basketball or soccer or something with a group of kids, friends or team mates, anything........ you know what I think? I think we all see things we would like our kids to do that others do, cause hearing you say you wish Kaylee could do better at academics made me realize it was okay for me to say wow, I so wish Chase could do so many things your kids can do and he cant, and it is okay, he is Chase and as long as he is happy, that is all that truely matters in his life....but at the same time, it is okay for me to wish he was able to do more right? And it is okay that i wish I could find another child in this world that is like Chase cause it sucks that he is the only child that acts like he acts that we know. I used to cry because he was so different from others with DS. At the get togethers, Chase was so different from the other children, his behaviors.....but it is okay, no one minded, he was accepted, as different as he was and is and everyone has always been so accepting, even catching him when he escaped and bringing him back, laughing and not judging, smiling and not horrified by his behaviors or mine, LOL sorry, had to throw a chuckle in there thinking about all the frustration I have shown at the hotels trying to keep up with Chase (God bless CMH for letting us hire an aide for him so life can continue on) anyways I am rambling.......... Pauline, I read your posts and I pray for your sweet boy often and for you, for the struggles you endure and I wonder at your strength, it is amazing. God made your son and mine and they are the way they are because of their disabilities, not because of anything we neglected to do, you were and are the best mom you can be, I am the best mom I can be, CC is the best mom she can be, Cindy is the best mom she can be, Radonna is the best mom she can be and so on and so on. Our children are our children, with as Pauline has just shown us each of them having great strengths that we sometimes forget.
I loved your list of things Pauline and I am going to sit down and write a list of Chase's strengths. I just bet you I will come away smiling now that you all have given me a clear insight into how good life is with my son, how good life is with my having friends like all of you to share this journey with. And that...in a rmabling sort of way is what I wa trying to say..... I will from now on share everything with you on this life's journey with Chase, the good the bad and the funny I love you guys! thanks for making life easier for me and for Chase ...and for my family cause they have to put up with me and Chase every day you know
hugs, Robin
PS I had to edit this because I forgot to add...Debbie you are indeed an awesome individual and I bet your family is so proud of you.
And if this thread has brought even one person out to start posting and sharing..like Gwen, well then , you did a great thing by sharing as you did you guys! Welcome Gwen!!!!

[updowns]

Oh Pauline, I am so glad you posted this. I often feel reluctant to post and boast about Sarah's achievements as they seem so small compared to others and also often reluctant to post about the problems and struggles in case we "look bad" or scare a new parent etc.. I realise that is really stupid as that is what this group is all about, a place to share the good and the bad.

Pauline you are a WONDERFUL mother, an amazing mother and Nicky and Ryan are so lucky to have you and what makes you even more amazing is that you chose to love and care for your boys, I just got Sarah, didn't have a choice (not that I'd send her back, I love her dearly) but in all honesty I don't think I would have chosen this path for our family.

I love hearing about all our kids and adults achievements no matter what they may be, big or small. And I hope this post has opened the floodgates for everyone.

Debbie - you ROCK - I would love to meet you, I admire you so much and you have so much to be proud of and I hope that didn't sound patronising, wasn't meant to be.

Robin, I look forward so much to the Chase stories!

Stella

ps Pauline, hugs to you

[cindylou]

Gosh Robin--I'm so glad you weighed in here. (not sure why I used that term..has such negative conotations for me at this point..LOL..but I am working on it. Put a size 12 on, trying to get to 10-) I know..I'm rabbit trailing..

glad you posted because it just gives such a broader perspective. I just had to add--there must be someone else around here who has 'chase-like' characteristics....POST UP anyone if your child is a huge escape artist! I can still remember that post where Chase locked you INTO his bedroom and OUT of the house in the snow in your pajamas!! Sorry--but I was laughing my butt off on that one--just thinking of me trying to climb out the bedroom window! I mean, I'm only 39, but it's been a while since I climbed out a bedroom window!! ;D

that's why it's great to have everyones perspective...to show the more accurate view of our kids...unique as they all are....because there are lurkers that need someone to relate to. And because ideas of how you handle any given situation with Chase really turn into life savers for others...which is one of the main reasons I come here--I need advice and I get it from reading about everyone else's kids.

Maybe if we didn't look at the negative things as negative--but rather just information--I don't know if that's possible..but I really think people should post the good, the bad and the 'I'm going insane' moments...

[paulinemjc48]

Gwen, I agree that when children are used to g tubes it is just another way of feeding them and giving their medication but Nicky has had a g tube for 12 years now and will have it all his life, he still has the inclination to eat but he gets ALL his nourishment and drugs through the tube. He also has an oesophagostomy so anything that goes into his mouth comes out through the stoma in his neck. He does have tastes of liquids as they come out of the stoma, he will have a spoonful or ice cream, custard, soup etc but only a teaspoon! However, he would much rather have french fries, I don't know if he remembers the time all those years ago when he was able to eat them or see other eating them and he wants them. He also gets most of his feed overnight by pump but has now got the stage where if he doesn't want it on he will switch it off! Without the g tube he would not be able to survive so I think it is wonderful but at the same time I just wish he could eat a little of what he fancies.
Pauline UK