Saturday, April 18, 2009

Mother Daughter Tea

St. Louis has a big DS organization, the DSAGSL, but it operates in several area support groups that meet throughout the metro area. Ours out here in St. Charles County has been a great source for community and information through the monthly meetings and other events, like the trainings on how to do an IEP, which I've been attending lately since we're just about to that stage. It's nice that the leader of the StC County group, Adrienne, is also a friend, online first and now IRL. And of course, Julie and I are undoubtedly two of the most important members of the group. I'm just sure of it. Right, Julie?!?

Today the girls and I went to a Mother Daughter Tea that was organized by one of the ladies in our local DS group. It was supposed to be a day for just Braska and I, but M ended up working again. (He's working ALOT of overtime. Great for income, not so much for my sanity.) So Kinlee came along too.

Braska wore one of her new spring outfits, thanks to the clearance rack at Children's Place. Granted, it's a 12-18 month size, and she's 29 months, and it's still too big, but I thought she looked just plain sunny and adorable. She even still fits in her sandals from last year, size 2!

It was at a little tea room that was all decked out in Victorian style, or I think that was the intent, anyway. I'm not up on that period particularly, but it was pretty cute.

There were alot of things I thought about while I was there that I wish I could remember to jot down for later pondering. I've been in this world of Down syndrome for almost 2 1/2 years now, and occasionally it surprises me the way I react to certain things. Today there were 9 or 10 little girls with DS there, ages 2 to 7, I think. It was a very small room, pretty much packed with our group of moms and daughters. There wasn't much room to move around, and very few of the little girls had interest in sitting in a chair. Moms were chasing daughters who tried to leave the room. It seemed there was a constant hum of "come back here," "sit still," "don't touch her," and so on. That's to be expected in a group of little girls, to some extent. But I found myself even more critical of the behavior, somewhere in my mind. I'm not saying that's the right reaction, but it was my reaction.

It made me think, and I realized that I actually hold Braska to a higher standard of behavior than I would most other children. Why is it that I want her to be better behaved, more obedient, more polite, and even more well-dressed and properly "styled"? Wow, that's far more difficult to admit than I thought it might be. Why am I so concerned that she always present herself well, keep her tongue in her mouth--no matter what the reason is for it to be showing, even if it's totally "normal" for the situation and very brief--and respond with a smile when spoken to (which she does not do)? Some of the little girls were better behaved than others. Some seemed to adapt to a new place and limited freedom within it pretty well, but most had a very hard time with the whole situation. It was like I was making mental notes of what I would remember to do or not do as Braska grew into these stages that were represented.

The only thing that makes sense is that I am in some way wanting Braska to defy the "norm" for DS. I want her to be the one who surprises everyone with her good behavior. If she has cute hair, matching bows, current clothes, and can sit still when told, maybe people won't sell her short from the first impression. How twisted is that? Or is it just a slightly bent way of trying to protect her?

This is alot of rambling nonsense now that I glance back over it, but I need to kind of think outloud. I did not think negative things about these moms in relation to their daughters. It wasn't that I was thinking, "Gosh, she obviously doesn't work with her on that," or "She really should have better manners." I mean, come on. The girls were young, most under 5. There aren't alot of 2- to 4-year-old girls that would sit quietly and proper-like in a tea room for 90 minutes, regardless of their chromosome count. Maybe my fantasy world has nothing to do with DS, maybe I just don't know how kids are. But I do know that I felt uncomfortable today at several points... and I wish I could really identify why. I hope it's not that I still have SO far to go in dealing with the reality of what this diagnosis means for our futures. I hope it's not that I've been kidding myself in thinking that I'm all resolved and settled with the whole thing. I'll never ever say that I've got it all figured out, but I did think I was farther along than that. I could be wrong. It happens alot, my being wrong.

Above all, I want to do the best for Braska, and for Kinlee, too. I really DO want them to be held to a higher standard, but yet one that is not unreasonable or overly restrictive. I suppose only time will tell. And I'll take these experiences as learning opportunities, that I may find out more about myself and where I need work. There's nothing at all wrong with cute clothes, pretty hair, and good manners, but I don't want to live in the shallow end. I'm definitely a project in process, but I'll get there.


  1. RK, a lot of the kids that are born today whether they have a disability or not, are NOT taught or disciplined to know how to behave. You experienced that yesterday. Yes those little girls had DS, but DS does not teach a child how to behave or act. People use the disability of kids to say it is okay for them to miss behave and act out. They have a disability so it is okay. NO IT IS NOT! When the real problem is the parents do not want to disipline them for whatever reason.

    We go out to eat and there are kids running around, crawling on the floor, over the booths, fighting at the table, and just plain making other people not enjoy their dinner. Then at another table you can see a family with 3-4 small children who are sitting there behaving themselves and not being disturbing to anyone. I always notice those families and at times will even comment so that the parents can hear me of how well behaved the good kids are, and what a joy it is to be able to see kids go out to dinner and not disturb others.

    I did not have my own kids but did have the pleasure of helping raise other peoples kids. My mother and I use to take 3-5 kids (ranging from age 2wks old to 4yrs old up until they were teenagers, out to eat at a time. We did not have any trouble out of these kids either. It was not because we were mean to them, they were taught from day one (not really but you know what I mean) that it was not exceptable behavior and they did not push it.
    However, I had a friend that could not go out to dinner with her kids because they acted horrible and she always said "well they are small and will out grow it." or "They are just having fun." Well now that they are teenagers they must still be going to out grow it or having fun because they still act horrible. It maynot be when eating out, but in other ways and times. Sorry but they do not grow out of it, they have to be taught what is the proper way to behave or act around others.

    Your daughters will be noticed for who they are and how they act. It is your responsibility to teach them how to behave and act, they will not learn it on their own.
    So if you ask me you are doing nothing but being a WONDERFUL MOTHER and PARENT for expecting Braska and Kinlee to behave and act like little ladies no matter what age or disability they may have.


  2. I think that you are being a wonderful parent expecting your kids to behave. And I don't think it has anything to do with DS. It's just what you expect and that's fine.

    I think on this journey, some days you think you come to terms with it and other days you don't. Kayla's five and I still go back and forth and probably always will.

    On the flip side, I never judge other parents due to their kids' behavior. You never know what else they are dealing with. I have two kids with autism and while I don't use that as an excuse for bad behavior, it does complicate things a LOT.

  3. I'm thinking about this too.

    No answers, but you're definitely not the only one.

    Really shallow: I almost never dress Abby in William's old clothes. Don't want people thinking she's not good enough for her own stuff.

  4. RK, I often find myself thinking very similar thoughts as you have expressed. I hold my children (all 5 have special needs) to what some might consider a "higher standard" simply because we "stand out" when we are out in public.

    However, there are times and situations when two of my children (both with different forms of autism, one of them also has DS) behave in a less than stellar way. I'm sure people whisper, but if they only knew what these children have endured and the challenges they face on a daily basis they might not be so judgemental. My 4 year old with DS was prenatally exposed to drugs, cigarettes, and alcohol before she was born. She lived her first year in total chaos. Her behaviors are challenging, but I do my best to make sure she is "controlled". You've met both of my kiddos with DS. They are night and day ... same parent and same expectations ... different outcome.

    I love to take my family out in public, because more often than not, they make me very proud with their manners and happy dispositions. We often get compliments in restaraunts from waiters and other diners. Our favorite checkout ladies at Schnucks know them all by name. Well, they know my 7 year old because they hear me reminding him as we shop "Isaac, remember your manners." "Isaac, are you being obedient?" "Isaac, hand on the cart."

    You are an incredible mother to Braska and Kiki. Their behaviors will change on a daily basis as they grow and mature. When Braska starts walking you'll see a HUGE change. Independence (in thought and mobility) creates a whole new set of challenges, and I'm guessing that is part of what you saw in some of the little girls at the tea.

    As parents of children with challenges, I think we are more keenly aware of how people judge our children as well as our ability to parent them. We are judged differently, and we acclimate our own behaviors, reactions and parenting when we recognize that.

    In the end, we can only do our best to love our children, train them up in the way they should go (no matter what their ability) and pray that we have more good days than bad. Should we be judged by those who have never walked in our shoes, then so be it. And, we should be mindful of judging others without knowing their circumstances.

    Off of my soapbox for a sec ... Braska's outfit was absolutely PRECIOUS! I do the whole matching hairbow thingy with Alyssa too! Where was the tea room you went to?

    Kathy (Momma to Nita, Nathan, Isaac, Alyssa, and Brandon)

  5. Hey There

    Vince momma.
    Vince would definitely not have stayed still. I can promise you that. Is it because he is not well behaved? I would diagree. Is it becuase he is a boy? Nope. Is it becuase his chromosome? Maybe partially. What I mean by that is that it is definitely harder to describe soething to Vince than it is to most other 3 year olds. Many other 3 year olds (I am talking mainly sans bonus chromosome) you can bribe, with if you stay calm, we got o McD, or you can pick a toy or this ir that. That does not work with Vince. He used to be SO calm and well beahved and we could take him anywhere. Now I realize, that he is most of all a kid, and I do not expect him to beanything else. His attention span is definitely not that long, and therefore we chose to take him to mainly child friendly places.

    I hear what you are saying, and of course I want my kid to behave. There is no spitting, throwing, messing with food at the table. There is no throwing things, taking toys or punching/kicking. But sitting still for 90 minutes at that age, is kind of pushing it i would say.

    Ciao fr Austria

  6. I will admit that I do hold all my kids to a higher standard. I'm also aware that we do draw more attention because of the boys. We don't "blend in" anywhere. I'm slowly becoming ok with that.
    For us, because we are constantly "out" and "on the go"(and because we have 5 kids!), it is essential that my kids know how to act accordingly in public.
    There are a lot of things that people can say about my kids that make me proud, but when they receive compliments from complete strangers in public about how well behaved they are...that's one of my favorite things to hear! Their good behavior also allows to us go more places and do more things with them, because it can be an enjoyable experience.
    I'm not real sure how much of that has anything to do with Ds. I had the same opinion before I had the boys, so my first reaction would be to say that Ds doesn't affect my way of thinking at all on this issue. On the other hand, if I'm honest, I know that I have thought about the fact that because people will pay closer attention to my boys, it's very important that they know how to behave and have good manners. So, maybe subcontiously, I do put more importance on this than I did before. Hmmmm.

    I will also admit that if I'd been at an event like you described and my child would not sit still and follow directions, we would have got up and left.

  7. I am very conscious of how Liam behaves. For us, we expect Liam to behave in an age-appropriate manner, extra chromosome or not. He's two, not much younger than Braska, so typical two year old behavior is to be expected. We have adapted our discipline and our teaching him appropriate behavior to his cognitive abilities. So far, we've never had behavioral issues beyond two year old craziness. He is exceptionally well-behaved in public and has decent manners.

    You're definitely not the only one in thinking this way. I'm also very aware of what Liam is wearing. Same for our typical daughter. Some of it is DS, most of it is my own personal hang-ups.

  8. O.K. I have to admit. This makes me feel VERY self-conscious. And NOT--believe me--because we don't work with Georgia to sit still, and behave, etc...I could probably write a lot of what Christine wrote about her Vince. We don't let her throw food, or any of that other stuff she mentioned. But also,we are currently thinking Georgia might also have an issue with ADHD (very common in kids with DS apparently) and as a result, when we are in a group...she likes to run around. We do EVERYTHING in our power to dissuade this including, if we have to, leaving the situation. I have high standards and I DO NOT LIKE AT ALL to bother other people. It's a HUGE source of stress and worry for me because I don't want G/us to miss out on things, but there are some things (including this tea) that I would just NOT EVEN ATTEMPT going to. I just don't think, given her attention span and desire to GO GO GO, that it would be remotely enjoyable for any of us!

    That said, I hear you on the clothes and other things. I think I try to overcompensate in the other direction though. I know Georgia HATES having her hair done, so although it killed me, I cut it off. But at the same time she is a kid, I WANT her to get muddy. I try not to worry if I don't get to her boogers IMMEDIATELY (although I try to and it's HARD with her chronic sinusitis), and I let her wear clothes passed down from our other family members. ALex is a little more mirco-managaing, like at the park, but if she comes home clean from a dirty park, I don't feel like I have done my job letting her be a kid.

    I dunno. You never know what a person has been through to get to a certain point (even just a certain point in her day). I try not to judge. And I hope not to be judged. I try to make my child a GOOD part of everything we do.

    Georgia finally started signing 'please' and I can't tell you how happy it made me. Finally. Some manners.

    We're a work in progress.

  9. I have only briefly read other's comments. We try and try and try to discipline Cameron (well, both boys for that matter). But at times we are just so exhausted from saying "no", "don't" and "stop" that we occasionally ignore the behavior (of course, only if it's not causing harm to anyone) and sometimes this works.

  10. What a cute outfit!! She's so adorable. The tea sounds like a fun idea, but that set up at the restuarant sounds a bit much for that age group though; I imagine it was hard for most of those girls to sit still. Taking Kayla to something that seems "formal" like that at a young age would stress me out LOL
    Anyway, I identified with what you were saying about Braska's behaviour etc, I did a similar post last year (I think for 31 for 21) about how I feel like I'm putting too much pressure and expectations on Kayla to have this perfect behaviour when we're out in public because she might be the "face" of Ds. And if this is someone's only interaction w/a kid w/Ds I want it to be good and show that she's well behaved etc. But that's not really fair cause no child is perfectly behaved all the time, not to say I'm going to let her run wild, but I need to stop stressing so much about what others are thinking :)

  11. This is Joyce. I read your post and all of the comments and I don't think I have anything to add other than my shock that a group of 4-7 year olds were taken to that fancy tea room. I remember taking my Girl Scouts to a similiar place and they were 13 at the time. It's a lovely idea but I think any group of girls that young would have had a hard time sitting still. I would have been on edge too just fearful they would break something.


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