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Thursday, October 30, 2008

Parenting and Perceptions

As a new mom one thing I struggled with (and sometimes still do) is Kayla's behavior in public and the perception other people might have.

It's not necessarily what I would consider really bad behavior either; she doesn't throw fits/temper tantrums, beg for toys or candy, cries or whines...but she doesn't listen. She takes off down random aisles going where she wants to go. She doesn't have a care in the world or even cares if we're following her. She doesn't care if she's not staying with us. How frustrating is it to call your child back "stop!" "turn around!" "come back here!" and they completely ignore you? Or they think it's a game and see how fast they can get around the corner before you catch up to them.

Kayla was never one to just stand in one place while I browse the shelves for whatever I'm looking for. It would make me a little sad to see other kids just walking nicely and calmly holding their parents' hands, or just standing by their side; my kid would have to be in the cart or else she would take off. (Over the last year she has become better at walking with us, but still has her moments of taking off.)

Same thing with restaurants. It stresses me out to go out to eat with Kayla. We rarely eat out as it is, but now I try to avoid it if possible. She won't stay seated. Up, down, up, down. Fidgety, trying to climb under the table, over the table. I bring things to keep her occupied but it just doesn't work...everything else is so much more entertaining. I hate saying over and over "Kayla sit down!" "Just sit still!" blah blah blah...so we just don't eat out.

I know all parents want and expect their kids to behave - especially in public. No one wants to be the parent who has the kid acting up and everyone else is discreetly trying not to stare at you.

But kids will be kids. They have short attention spans, they're curious, it's hard for them to do grown-up things, shopping can be boring for them, they have moods, they're not always well-behaved.

So while yes, I do expect my child to listen when I'm calling her, or telling her to stop, sometimes I think I expect too much from her. I think I've put expectations on her to be good all the time and when she doesn't I get frustrated. And no child can be "good" all the time. It's not reasonable to expect perfect behavior (although it would be nice!)

I think I've put some unreasonable expectations on her because she has Down syndrome. Because if she's running away from me and not listening when I'm telling her to stop and I end up chasing her down...then people might see that and think "oh she's got her hands full with her daughter who has Down syndrome." Because if we're in a restaurant and she's not sitting still (and I mean standing up on the chair, sitting down, standing up, getting down) someone might look at us and think "thank goodness I don't have a child with Down syndrome; look what the parents have to deal with."

I expect her to have this oh-so-perfect behavior because what if our family is the only interaction some other family has with Down syndrome and think negatively because of it? Whereas if she was "good" all the time then someone might observe and think "oh having a child with Down syndrome isn't so bad."

Of course I have no idea what anyone else is thinking. These are only my thoughts on what they might be thinking. But I do worry about what other people's perceptions are. I worry if they're going to judge a whole segment of society - people with Down syndrome - based on what they see of my daughter.

I know this isn't fair to Kayla at all. It's not fair for me to expect her to be "on" all the time just so she can be a "positive face for the Down syndrome community." She's not the poster child for Down syndrome. And if I don't want people to perceive her "negative" behavior as an attribute of Down syndrome then I need to stop doing it myself..because sometimes I do wonder "would she be acting like this if she didn't have Down syndrome? Would she be this active and impulsive?" And if so would I care as much? Would I worry so much about what other people thought? Would I stress so much when we go out in public? I need to see her personality for what it is - a highly active and curious child (which totally clashes with my more mellow style!)

I do know that her "behavior personality" isn't specific to Down syndrome. I know a lot of typical kids act the same way and some of it has to do with age too. But when you have a disability it feels like everyone is judging you/your child on that instead of it just being "their age."

I don't even know what exactly it is I'm trying to say here! Just that sometimes parenting really is hard; trying to figure it all out - how to raise these little people that depend on you for everything. Trying to do the right thing by them...sometimes failing, sometimes succeeding...but learning through it all.

Get It Down; 31 for 21


jennifergg said...

Love this! I do the same thing and feel the same way. And it stretches to ALL my kids, because I don't want people to see us and think, Oh! Those kids are having such a hard time because *they have a brother with Down syndrome.*

It's such a burden! But it's real, it's there. I know we're the only family that has Down syndrome as a part of it in many circumstances.

But, we're also the only homeschoolers sometimes, or the only twins, or the only writers...so I really really try to see these things as positives.

I don't have a point! Just nodding my head in agreement...


Cheri @ Blog This Mom! said...

Hi Michelle,

Certainly you have some issues with Kayla unique to Down Syndrome. As you know, Laura has a good friend with Down Syndrome so we have seen people look and react to her friend's behavior differently than they might react otherwise, including sometimes being more patient, and sometimes not.

But worrying about what people are thinking when you're child is not acting as other people might expect is a trait all moms share. Laura is very sensitive and cries easily. I would constantly worry whether people thought she was a cry baby or that I was an inadequate mother in some way for "letting her be that way." And you know what? People are going to think what they're going to think. I have been working hard on letting go of outcomes and expectations, and trying to be in the moment where Laura is when she begins to cry or have a "meltdown." Rather than reacting to her tears based upon what I think other people might be thinking when they are staring at us, I have been trying to be present and available to her. It's a work in progress. I just wanted you to know that I get what you're saying.

jessica @ raising joey said...

I'm sitting here nodding my head with you and Jennifer! You're not the only one feeling this, hugs!

Anonymous said...

I could have written this post; it hits that close to home! I'm having a dilly of a time with Gabriel when we're out in public places and I do feel very self-conscience.

Your descriptions of Kayla running away and of going up and down in her seat is exactly what Gabriel does in both stores and restaurants. It's really hard for me to handle because I can feel people staring -- I've seen people stare -- and I do the best as I can under the circumstances. But it is HARD.

I have to admit that there are days when I just don't care what anyone thinks -- including well-meaning family members who won't support me when I'm trying to calm and bring focus to Gabe -- and those the times that I do better with my own anxiety in the situation.

Jeanette said...

Oh Michelle. You just described my 4 year old. (who by the way is not taking a nap right now, ugh). He does all of the things that you said, the only difference is that he is not the one with Down syndrome. He wandered off constantly. I even debated the kid-leash. He had no fear. He is also my restless one. He NEVER sits still.

My 8 year old had some major moments as well. Did you know that you can stand next to a car in a restaurant parking lot for over an hour with a screaming child?!? Or walk from one end of the mall to the other with a child dragging his body on the floor the whole time? He was prone to spontaneous meltdowns, pitiful crying, not tantrums. I have had my moments of being looked at with the "failed mother of the year" looks. I have shrivled and cringed in public with my kids' behaviors. Both of my boys were VERY different and they each gave me major "moments".

I know that there is one more child, Syd to give me a whole slew of new "experiences". I am sure that I will be thinking along the lines that you are. It is the human nature that we have.

Thank you for posting this. It definitely hit home. All I can offer in the form of advice is that you are SOOOO not alone! Mom's everywhere are in this with you. And NEVER under-estimate the power of a bath... for you, not the kids. HUGS, my friend.

datri said...

Wonderful post! My older daughter has autism, so no one can "see" her disability. My problem is that when I go out with my Kayla, she likes to grab butts and pull hair. When people turn around and see her, they just smile and say "oh, that's ok" and I have to smile back and say "thanks, but it's not ok". I don't think she should get a pass on her behavior just because she has Down syndrome.

rylie's mom said...

Yes, I can relate! Last year I was so worn out that I got Rylie a behavior therapy team. Unfortunately they were no help at all! The therapist and teachers at Rylie's preschool step in and helped me out. They put together a behavior plan at school and one for me to follow at home. It mostly involved giving Rylie choices,ie....Rylie, do you want to sit down and eat your dinner or go in time out? It really helped. I would be happy to share more if you wanted. Rylie loves the game, RED/Light Green/Light. When she starts to run away from me I shout RED LIGHT! And she always stops. She has gotten so much better! Eating out at resteraunts is not a problem anymore, however I would never take Rylie grocery shopping w/ me unless my husband goes to.

When we were at family gatherings and Rylie was acting up, and my husband and I were chasing her all over the place, telling her no, stop... etc, it droves me crazy when people would always say to me, Oh let her go, she's Ok, she's just being a Kid.Sometimes I actually wanted someone to say, Oh poor Val, she must be exhausted, I should help her out! Ok, sorry I'm just venting now.LOL!

Anyway, I do finally feel like I'm making progress with her.

Sunny said...

I loved this post. I'm glad to know I'm not alone in my thoughts. My biggest struggle is at church. During worship service there is NO way to contain Antalya. She won't sit still for more than a second. She gets excited and starts laughing loudly or worse - screaming with delight. I look around at all the "normal" children sitting so nicely on the pews and which that we could just blend in with them - that my child would seem just like the rest, and that people won't pity me for having a child with Ds.

Omaha Mama said...

If you ever met someone who had those thoughts, they'd probably have them with or without meeting you.

Both of my kids have done (B) and do(our little guy) exactly those things you describe. We struggle to get B to sit while she eats, she's always so busy. High expectations are okay. I just don't want you to feel self-conscious for Kayla. She's not. :0)


Stephanie said...

I've only been a part time parent for a couple months now and I deal with this same issue all the time. Not because ours has down syndrome but because I am afriad that if my 15 month old acts up or starts screaming at the top of her lungs, that people will look down on us and think we're bad parents because we can't control her behavior although we really do try and often succeed. You just have to realize that if people judge you from seing you ONCE in public, then they're not good people and you don't want them as friends because you never know anyone till you actually take the time to learn about their family. How do they know that you daughter isn't having an "off" moment.

Don't stress about it, just do the best that you can and praise her for her good moments, if you're stressed, people will see that you're stressed and look down on that, if they see that you're fine even when she's acting out or being curious, then they're more apt to think that it may be an off moment or maybe that she's excited because you don't go out so much.

You're doing fine hun.

Mom24 said...

I don't have children with DS, yet I was nodding my head in agreement the whole time I was reading. Your first and last paragraphs could have been written by me. We all want our kids to be at their best when we're out. It's hard for all of us when they're not. I'm sorry you have the extra dimension of worrying about the 'face of down syndrome'. You're right, you don't need to take that on. Kayla is a child--just as she is, the good and the bad. You're also right to know that's no different than any other child.

BTW--we avoid eating out also. Our kids are better behaved now, although I would point out Jacob's 8 to Kayla's 5, but they are so picky. They don't eat what they ordered, they complain, it's just really not fun to eat out with them.

{{{hugs}}} for the honesty. I love reading other moms who are willing to admit it can be really hard sometimes.

Anonymous said...

You are not alone! I've learned to preface every experience (not so much necessary in the past couple of years but still a good habit) with a short review of expected behavior,"this is how we behave in a restaurant", etc. My daughter really responds to clear, concise expectations,"staying in your chair, feet on the floor, if you run away you have to go in the cart". I do think all parents struggle with how their kids behavior seems to reflect on them tho!She is still very young you know!

Killlashandra said...

Parenting is hard no matter the kid, that's just a fact. It's good to vent about it though, I have had those moments when people on the train look at me funny when W.W. suddenly decides to play with my hair or go to the bathroom 3 times in a row. It's so hard sometimes.

Acknowledging it's hard is ok, you're doing a great job with them both!

Bailey's Leaf said...

Oh, Michelle! I'm just confirming that Kayla is being Kayla because she is a kid. But, I understand what you mean by the outward appearance giving people an "oh no" label. It's sad that happens. Mostly, at least in the mom community, most moms think "Oh, I've been there." We're okay in a restaurant, but we do have the public runnings.

We feel your pain, sister. Feel our love!

Bonita said...

Michelle, I think it's wonderful that you identify and articulate your thoughts so well. I don't know what others are thinking, but if I saw Kayla in public I'd think she was acting like any other kid. That's how I remember mine acting anyway.

Sue said...

You're not alone. I'm lucky that my girls hardly ask for anything in stores, but that doesn't mean their perfect angels. Alysa is the one who most often takes off on me, but Kayla has her moments too. Sometimes I think all people see of me is a Mom who has to "yell" at her kids all the time. :)

I've never thought what you think people think - about someone's behavior being from their disability. Maybe it's b/c my kids are doing the same things as yours? LOL

Hang in there - it may not be easy, but at least we're not alone!

Jodi said...

I can understand how frustrating it must be for you.

We live with the opposite problem but with similar results. Our adopted children have many emotional/mental issues that they deal with on a daily basis. These require creative parenting on our part and sometimes requires that we be extremely strict. Because you can't see their disabilities many times we are perceived as being mean, harsh, or unfair. The general public, oddly enough, are the most judgemental when we have to discipline our kids out in public. It is embarrasing and we avoid taking them out especially when we know they are having a bad day.

A Life Full of Love said...

This sounds so much like my daughter. She runs nonstop. We have had to do the leash many times with her and she will grab it and pull on it or sometimes lay on the floor and say pull me, pull me. You call her name and call her name and there is no acknowledgment at all! We know she can hear! Today was a particularly BAD day, and I was a little shocked to see your post and realize that I am not the only one wondering what people are thinking when I am out in public. I dont know if Kayla does this, but my little girl can scream so loud you believe glass will break in the store. Now, she is not ALWAYS like this, but lately.... grrrrr. I dont know if this helps or not since she does not have Down syndrome.

A Life Full of Love said...

Oh, and restaurants? Gosh, she does this at home too, up and down, up and down, but she adds a horrible whine in the restaurant to get what she wants.

Michelle said...

I totally agree - because I feel that way if Ruby cries while we're shopping, or throws food in a restaurant.

Tammy said...

What a good post, Michelle...

Although my children don't have Down Syndrome I too struggle with sometimes thinking- subconsciously- that my children should always act nicely...of course, intellectually I don't expect them too, but on another level I must because I get frustrated and embarrassed on occasions that they have acted out.
My now 9 yr old has outgrown it, but "back in the day" she could really throw a tantrum. I did my best to curb them, and to show strangers that I was not a mom who gave in to tantrums!
And even this week, my usually docile six yr old had a moment in the store when she didn't get to have a toy she wanted...SO embarrassing!
But as you said, our goal as parents is to train them up the best we can, and do that hard act of balancing love and discipline!

(And from what I can see, you're doing a wonderful job!) :)

Tracey said...

Well, I don't have a child with DS, but let me tell you, I have had 2 boys with personalities that don't always mesh well with society's expectations. And it's hard whether or not they have a genetic disorder. I can understand why you would worry over how Kayla's behavior might be the only time someone might be exposed to a child with DS, but I think that honestly? We all as parents, expect a lot from our kids. And we all tend to think everyone's looking at our child climbing up and down when really they're just eating their own meal and ignoring you...


Michelle said...

We have talked about this before - because Matthew is the same way. And I have the extact same thoughts - don't want someone to label it "because he has Down syndrome". So yeah - totally nodding my head in agreement also!

Debra said...

You took the words right out of my mouth. I see other children and know that even though they may not be well behaved, it is not the same for Hope. That little extra seems to make other judge her more harshly instead of thinking she is just four and what do most four year olds do.

Thanks for your thoughts.
Debra and Hope

rickismom said...

Well, this was me exactly several years ago, and sometimes, even today.
I would like to point out that those kids with Down syndrome who are the "run-around" type (as opposed to those who are more placid), if handled correctly, learn faster, as they SEE more.
If your daughter continues to be very contrary, impulsive, etc, past age 5, consider the possibility of a dual diagnosis of DS and ADD or ADHD. My daughter (now age 14 years) has both.
I wrote an article on this, you can see at:


In the meantime, a few recomendations:

Keep in mind that wandering behavior is still quite common at this age. Consider using a leash. (I know, I didn't either.)

Assuming she understands "rewards", I would advice sometime of behavior modification for when you are in the supermarket.If she walks with you, she gets to pic a treat out at the end, see favorite video at home. But this will work better as she gets older. Since she is small, you might want to consider making more trip, each one shorter. This will make it easier for her to "be good" for the duration.

Actively engadge her in helping you shop. Have her put the stuff in the basket. Comment on the stuff you see. (A cool opportunity for reviewing colors, sizes, food groups, etc etc., etc....)Make staying at your side interesting and exciting.

As for the resteraunt, perhaps a few small "special, new toys tucked into your purse could be used to help keep her occupied more possitively.

I can be found at:

Cana said...

Great Post! Wonderful Picture! Cute and Sweet Kids!


Christina said...

I feel the same!
Vince does not stay at the table for very long. We tent to go to spots bars mostly for dinner with him, as they usually have TVs... Then he stays for as long as it takes him to eat, Usually a meal is OK. But we dont do it very often...

But Kayla is our idol! I love the picture of her a few years ago when she is holding a broom. Viunce was just a few months old back then, but that picture changed our world!

Best wishes fr Austria

Nancy M. said...

When my son was younger he was like that. Up and down and all over the place. He has ADHD, so I guess it's all that extra energy. It has gotten better with age. Just try not to worry so much what other people think.

Heidi said...

I can absolutely understand where you are coming from. And with that I say, Who Cares! My kid DOES throw fits and doesn't listen, and the other one begs for candy. They are all kids. We should lighten up on ourselves and just handle each situation to keep the kids safe, not to please the onlookers. They can think what they want, they already do.

Heather said...

I CAN tell you that my oldest was/is just like Kayla. She is 10 and I still dread taking her to the store...although restaurants are much better now! She does not have down syndrom but I can still relate to what you are saying. I do feel that I put unrealistic expectations on my children and want them to ALWAYS behave out in public. I remember that I couldn't wait for my child's teachers to have my 2nd child come through their class so that they could see that I am a good parent because she is so much more behaved. So silly. Sometimes I think God gave us the children He did to humble us (as far as their bahavior). What should we care what someone thinks?! One time I heard another parent say loudly to her perfectly behaved child, "that child needs a spanking!" And it kind of hit me...how boring their life must be! My kid may act crazy sometimes and maybe sometimes she does need a spanking...but she makes me laugh every day and fills my life with joy!

Karly said...

I can so relate to this post, Michelle. It's good to know we are not alone.

Beth said...

Funny I should read this today - you mention that she runs down random aisles trying to get away from you! I had the girls in the grocery store last night for a quick run in - nothing major. I honestly thought I was going to leave the cart in the middle of the aisle and just walk out! They were both running in different directions, going around corners where I couldn't see them! Makes me very nervous!

I think this is a post that all parents can relate to whether Down Syndrome is involved or not! I worry what people think when I'm in a store or restaurant and my girls are behaving "just so"!!!

Good luck and parenting is hard! But oh the rewards are so great....No point either...

chelle said...

I feel like this when we are out with others that know us. Not quite the same, but still. I was totally on edge eating out when my Dad was here because Becca wouldn't eat or would stay seated.

I think moms in general worry too much about it all. It is what we do.

Kari said...

I could have written this post lol I feel the exact same way. I have 3 children and they are all challenging in their own way. I need to remind myself often that the older 2 were also a handfull at this age. It is not because of DS. Maybe some of the behaviors will last longer but other than that my other 2 kiddos drove me equally nuts and maybe even more so at times. I so cannot wait for the day we can go for a walk in the mall and not have to worry for Tristan to run off. One thing Tristan does often is grab people as they pass us in the grocery store. I always tell him not to and explain blah blah almost every single person tells me "It's ok" It drives me nuts. Some times I even get mad and say back "No it's not he can learn like everyone else that it is not ok OK" I'm definately not the poster Mom for children that have DS LOL People probably think I'm cranky because I have a child with DS little do they know I have always been cranky LOL

Joy said...

I do the same thing. I worry that people will think negatively about bigger families, since we have 4 young kids. I also worry they'll think negatively homeschooling because of seeing my kids having a having a hard time sometimes. Don't we all have hard times sometimes? Thanks for your thoughts on this.