I realize I'm not always being true to what our life is like if I don't blog about the challenges we experience. Most times I hesitate to write about 'those' days that I have with Kayla, and why is that? I have plenty of 'those' days with Lucas and I wouldn't hesitate to write, or talk, about the challenges and frustrations with a 2 year old - because people expect that. That's what life is like with a typical 2 yr old. No one is going to read about a challenging day I'm having with Lucas and think "I'm never having kids!"
But if I talked about how frustrated I get with Kayla sometimes? I worry that is the post some expecting mom will come across. Someone who is contemplating terminating her pregnancy because she doesn't think she can handle raising a child with Down syndrome. She might read a what could be perceived as negative post and that will convince her that she was right.
So I've hesitated, and had this post sitting in draft for a few weeks. I'm publishing now because this is real life. My real life. And if someone doesn't realize that there are good and bad and challenging days, and behaviors, with raising a kid with Down syndrome ... well then ... they had their mind made up a long time ago and my post isn't going to change that fact.
I signed Kayla up to play in the Bambino Buddy Ball league and she's participated in a handful of games so far. Its not been the fun time I thought it would be. She enjoys getting up to bat and hitting the ball and running the bases. Other than that she doesn't seem very interested. She doesn't pay attention when out in the field and runs around all over the place. Then her 'buddy' starts chasing her and of course Kayla thinks that's the fun part. So she laughs and runs more to get away and be chased.
Quick background on the BBB (which I think contributes to Kayla's lack of interest)
- it seems a little chaotic
- the team plays each other
- sometimes more than enough 'buddies' show up so some Bambino players have 2 'buddies' with them
- they don't go stand in specific positions on the field; just generally go out on the field wherever
- A lot of times there are more players then there are positions, coupled with each player having 1 or 2 'buddies' there could be around 20 players out in the field
- they have no practice
- there is no real instruction on what to do out in the field
- there is no age limit so 5 yr olds are playing with adults
I think I should have tried Kayla on a regular t-ball team. It might have gone better if she was with all kids her own age, having practice, having actual instruction, and not be so chaotic with so many people running around the field doing their own thing. Or maybe I'm kidding myself and Kayla still wouldn't be interested. (I think that's part of my frustration - I want her to like and enjoy participating in these typical kid activities, but she just doesn't seem to be interested.)
The last game Kayla 'played' in was the worst. I warned the lady who was helping out as her 'buddy' that Kayla is a runner and she should be firm with her and engage Kayla in what was going on with the game. This 'buddy' was also assigned to another BBB player (an adult male) who followed her around whenever she chased Kayla.
Besides running off and being chased down Kayla started taking her hat off and throwing it to the ground. The 'buddy' would pick it up and give it back to her and Kayla would slam it down again. Rinse and repeat. Kayla saw another BBB player lying down on the field (but her father was with her and she was only down for a few seconds) so Kayla copies her. When Kayla's 'buddy' tried to get near her and pick her up Kayla started kicking her feet at her.
I was so frustrated and embarrassed and upset. I couldn't believe she was behaving that way and I just wanted to sit in my seat and cry. I had never seen her be so disrespectful to another person as she was when she was kicking her feet at this lady. Once I could get her attention I had the lady bring her off the field and to the sidelines. I had Kayla sit in the chair for a time out the rest of that inning.
So what is my unpopular thought about? The whole time I wanted to cry I was thinking, "I wish she did not have Down syndrome." That is the thought that kept going through my head over and over and over. Because I attribute behaviors like that to that extra chromosome. Is that fair? Probably not. Who's to say Kayla wouldn't act like that if she didn't have Ds? She very well might ... but sometimes it feels ... easier I guess to have something to blame. Because it feels like all eyes are on you and your kid with DS when they're acting that way. You feel that people pity you, that they think, 'thank goodness I don't have to deal with that.' But does anyone see a typical kid act that way and have those thoughts? Usually not, usually they just figure you've got a kid having a tantrum and its part of that stage. So I blame her diagnosis. I blame Down syndrome. And I get sad that we have to deal with this. And yes, I sometimes wish she didn't have Down syndrome.
Does that mean I don't accept her or love her? Of course not. I do and I do. I just have days where I can't help but wonder what if. And I know that's not a very popular opinion in the DS community, but some days its just how I feel.
So there you have it ... it's not all tulips in Holland. But its not all roses in Italy either.
39 comments:
I have the EXACT feelings about posting negative or "too real" things about behavior and struggles with Braska. I want to be the light showing "It's all ok, we can deal with it, it's not so hard." I can't handle the thought that someone might look at or read something and think that they would prefer to kill their baby than deal with that issue. It haunts me. And it causes me to censor alot.
I've been going through alot of pondering about this lately. I think we have to be honest, though it scares me, I admit. So I'm glad you told us of this situation. For those of us a few years behind where you are, it's so helpful. I hope and pray it's not upsetting to the wrong person, but that's out of your hands, and mine.
And you make a great point...I often wonder what is T21 related and what is just being 3 and being Braska. I almost wish there were some way to tell the difference. But then again, I'm glad there's not. I remind myself alot that it doesn't matter. She is who she is, one whole package, and I am a fan of that package even on the difficult days.
I know exactly how you feel. I have days like that with Katie too. I too sometimes think of how much easier my life would be if Katie was a typical 8 year old but if I had the choice I wouldn't change her. I love her the way she is the good and the bad!
I'm glad you share the real. Leah is younger and it's nice to get a feel for obstacles we might face as she gets older and how we could attack that situation if it comes our way. We know there's joy (so much joy) but there are hardships. Hardships come with everything we do. So, from one reader out here in the blogosphere, I'm glad you share the real.
Hugs.
First, I appreciate your honesty. With children of any age and any part of the spectrum of ability, they are going to absolutely embarrass the tar out of their parent at some time in their childhood life. Believe me, K- still does it.
Just as you occasionally wish that Kayla didn't have Ds, I occasionally wish that my K- didn't have a birth mother with the history that she has. I wish that the story was prettier. However, I know that someday K- will know the full story and there are parts of it uglier than what I prefer to tell her, but I must at some point.
It doesn't make it easy.
Rest assured that each parent has had times that we've all wanted to dig a hole in the backyard and dunk our head in until it was all over.
Another day in the trenches.
I appreciate your honesty SO much. I wish there was a little machine that told you what stuff was related to DS and what wasn't. Do they give the buddies any specific training? It sounds like they might benefit from a little card on each player, you know, strengths weaknesses, possible issues to watch out for and how to react. If they're with a different player each week they probably don't get ot know them well, so maybe a little info card would help?
Not long ago, a person left a comment on my blog that really made me want to hide for cover. I think I've always been a pretty honest blogger about my feelings concerning having a son with Down syndrome. I was told to pretty much get over myself because my son only has an extra chromosome.
I don't have too many followers, and I'm okay with that. When I went private for a while, I received a few emails that made me realize that there are readers out there that "get me". I realized, too, that I write for me. It's one piece of my life that I have control over in a time when I feel so vulnerable.
I've learned that most people don't understand about parents who have kids with special needs is that we have NO choice in how THEY perceive us. And we have a hell of a lot to live up to and "managing our kids" is one of those quiet expectations.
We're entitled to feel beaten down and we're going to go to that place of "what if" when our kids aren't living up to our own expectations. The people that do get it, are there, wearing the same shoes.
I so get what you're feeling, too. Just now, I had to physically remove Gabriel from our neighbors' house. Unknown to me, he ran into their house, and when I found him, he was heading into their living room.
The woman's mother was visiting and I could tell she was disapproving. Her two six year old grandchildren barely tolerated Gabe's presence as well. They know he's "different". It was awful. In that moment, yes, I wished he would "just be normal".
I guess what I'm trying to say is that you're not alone in your hesitation, your feelings of disappointment, the difficulties of managing your expectations...all of it. I'm there too.
As the mother of a typical 6 year old I can tell you that even without an extra chromosome there have been times that I wanted to crawl into a hole. My daughter can also be easily distracted and is a little immature for her age and there have been many times that I wish she could behave or be like another child. But that is when I realize that one of the biggest challenges for ANY parent is accepting your child for who they are and loving them (and being patient with them) despite the things that you wish sometimes could be different. I realize that with down syndrome there are different challenges and I don't mean to minimize that but I think parenting children is a very humbling experience and sometimes those of us who may have more challenging children will also be more compassionate and understanding of others. Good luck-I admire that you had the courage to put her in a team sport. We are just getting that courage up ourselves as I didn't want to have the one child that couldn't stay where she was supposed to be :)
I am so with you on everything. It really is tough sometimes, but doesn't mean that I love her any less. My oldest is giving me a whole lotta grief lately with his behaviou and I don't have DS to blame it on with him! With him though I'm told it's "just a stage". If he misbehaves that's just part of being a kid, but if Kaia misbehaves people think it MUST be because she has DS....why is that? Anyways, hang in there, it's ok to have these kinda bad days. It's part of life with any kid.
Oh, and for the record, baseball/t-ball is tough for any kinda kid. DS or not. It's too slow moving and not enough action, unless you're at bat which is for about 3 seconds every 1/2 hour or so. What kid wants to stand around in out-field and just stand there and wait? None that I know of. So they need to entertain themselves. That's just what kids do.
Michelle - I think we all feel that way sometimes... lately Whitney has started getting such a little attitude - anne will try to kiss her or hold her hand (and granted anne gets in whitney's personal space a little too often, so i can see where whitney is coming from) but whitney will just push her away and give a real attitude sounding statement (that we don't know exactly what she is saying but it is clear by her tone)- so i wonder... is it because she is almost to the terrible 2s or is it that she is just extra feisty because of the fact she has that extra little chromosome? i love whitney to death but who of us hasn't wondered at times what it would be like without all of these extra therapies, research of best ways we can parent/feed/keep healthy/etc... that is in addition to the TON we already would do just for our typical kids. i am happy to do it, but sometimes it would be nice to just have a break and you can't help but wonder "what if she didn't have Ds." i think you did the right thing by posting what you have been thinking and feeling and there is no shame in what you had to say AT ALL!!! :)
I know my mom has gotten embarrassed by me and I do not have ds
One of my fears about having a kid with DS was that all the other parents would be so superhappy and not struggle and I'd be the one with all these difficulties. So, for what it's worth, thank you.
on baseball, I have a few thoughts. William played this year and it was just chaos. Kids that age, it's hard for all of them.
I find it odd that she'd play with adults. I guess I understand, but if I think about it...I don't know. weird. Would you put her on a mixed-age bball team if she didn't have DS?
Finally, maybe she just isn't into baseball.
Thanks for sharing this post. I know exactly what you mean!!! I know in the Ds community none of us like to highlight the difficulties we face, but because of that, sometimes I feel I'm the only Ds mother that struggles.
PS When did you start doing time-outs with Kayla? How did you get her to understand the idea of having to sit in a time-out?
I love your last statement. It's so true. Matthew is only 2-1/2 and we have "those" days too. I attribute his tantrums to him being 2, to personality traits he might have inherited from Bill or I, and yes, sometimes to him having DS. I have been contemplating a post similar to yours recently but haven't gotten around to it. Someday...
I think that everything we write about our lives with our kids is helpful to new parents. What you write is helpful to me since Matthew is a few years younger than Kayla. People have to eventually realize that we're only human. Our kids are only human and as RK said in her comment, it doesn't matter because our kids are who they are. We take the good and the bad in one whole package.
this may be a total repeat comment, I didn't have time to read everyone's words but I want to hopefully encourage you! as a early childhood teacher I need you to know that any child, put into a situation where they don't know what is expected of them or what their specific "job" is will act out! this situation sounds chaotic whether down syndrome is involved or not. and please don't think that everyone is out to find a fault in your or your child. all children have moments when they behave disrespectfully... and there is usually something triggering it. I bet Kayla would have done will with regular ol' t-ball, just because it would have provided the structure that any first time learner needs! thank you for sharing your thoughts on this though Michelle - just in doing that you are helping many parents of children, ds or not. hugs to you and play ball! :)
Oh my gosh Michelle, you're NOT alone! I think we all wish the Ds away some days. If I said I never did ... I'm probably not being totally honest. And since I'm being honest, I've got to tell you that post had me giggling. Sorry. It's just that I could have written it!!! First I was thinking of my son last year, his 1st sport, tball and it was the summer after K. He was all over the place, never knew what was going on and nobody ever told them what to do! All he cared about was talking to the other kids and if he had to use the t (which was usually back then) - he would throw a big temper tantrum and cry (yep, cry in front of all the people!)
Secondly, Chelsea played on a soccer team much like Kayla's team it sounds like. Too many people, all chaos, nobody was stern with her or tried to get her to conform in any way shape or form. By the last "practice/game" she didn't even get near the group of kids playing. She spent the entire time on the other side of the field, most of it on the ground. She was sitting, laying, running from her buddy. At one point I could see her from across the way sitting criss cross applesauce and pointing to her buddy, then to the ground. She was clearly bossing her around and telling her to SIT. She was persistent the girl play patty-cake with her. Sigh. Seriously I thought ... MAKE her participate! Because it's a special needs team, I guess they think it's okay for the kids to do whatever the he** they want. Ummm, not so much. We're trying "typical" community center soccer next fall. If Dad or I have to be her one on one buddy, so be it. She's active, needs exercise and has great gross motor skills - I want her to use them! I would like to hear from somebody who has tried their young Ds kiddo on a "typical" sports team. Maybe we're asking for it - who knows?!
I much Prefer the honest stuff, too! I feel a little less alone when I find out my child is acting like a lot of other kids (ds or not). Also, i'm with Cate about the team--the ages and maybe she's just not into baseball. There's probably something right around the corne she IS into!!
So glad you posted this...I too have had those days. And it's true, sometimes I don't write about the hard stuff...I should start doing that because there are hard things about parenting a typical child and I would write about those. By the way, I think you should try Kayla in regular T-ball, the situation you describe sounds like absolute chaos! Again, thanks for sharing!
Thanks...and Sorry!!
Sorry all didn't go well. But thanks for posting truth. I posted the other day about the positive things about Jonathan along with the very real negative. I tossed the idea around for over a month, for the same reasons you did. As much as I want people to see him for Jonathan and not the Ds, I think they should know that they to are real kids. Some on the same level as their age some not. We have good days and very tough days, so we take the good with the bad. Sometimes on occasion I have a few tears and then we move on ;)
Your a great Mom and Kayla is very blessed!
Laura
I love your last sentence. Very true.
I think its kid by kid, but you're right that you can't discount the Ds. We did regular t-ball (and gymnastics, tennis, ballet, and soccer) through our county parks dept. They offer a free aid, usually a college girl, for Abbie. Some days Abbie participates wonderfully. Some days she only wants to do the fun parts like bat or certain games/skills. Some days she runs and wants to be chased. Some days she sits on the side and simply rolls a ball with her aid. Some days she sits on the side and yells if her aid comes anywhere near her. Yeh. We have good and bad days.
BUT when we get home, even if she never picked up the dang racket in practice--she will go through every skill like a pro when Daddy gets home. So proud of herself. She was watching. Its the participating that's hard.
HOWEVER, you know my twins, right? They're in the same classes with her. And my bigger twin, M*, stands on the sidelines and throws ALL OUT TANTRUMS every single practice. The kind of behavior that makes you want to pretend for a moment that she's not yours.
So...hard to say how different it might be without Ds, you know?
Our first year of baseball did not go well...B had just finished kindergarten. She'd often come and try to sit on my lap, hot and frustrated. She was not into it. Failed attempts at team sports seem to be our experience in general so far. Kayla may enjoy something else more, there is so much down time in baseball...it requires a longer attention span. Don't beat yourself up for things your mind wanders to. I picture my life before kids sometimes, before marriage even. Does it mean I don't love my family? Absolutely not. We all have *those* days. I think it's great that you're willing to lay it out there, to be real. If I were there, I'd give you a hug and we'd laugh about motherhood. Isn't it a roller coaster!
T-ball was a disaster for Joe the first year (exact same issues). Now he is in year 3 and he is really a star on the team and he actually LIKES it. I think T-ball has too much down time of waiting so it takes awhile for kids with limited attention spans to participate fully.
I share your feelings and I think it would be dishonest to suggest that there aren't unique challenges when raising a kid with special needs. The trouble is, for me, that I keep beating myself up for having those thoughts!
Amy
So there you have it ... it's not all tulips in Holland. But its not all roses in Italy either
That sums it up. Thanks for you honesty.
Michelle,
I think you have spoken for most of us Ds parents. Beth is 25 and for me, those feelings have never diminished. I still blame her poor behavior on the fact that she has Down Syndrome. The tough part is knowing, really knowing if it is in fact, disobedience or just nonunderstanding. And how to deal with it, teach or punish? I wouldn't say it gets easier as they get older, but you find it just becomes part of everyday life. And you realize that every parent has stuff to deal with. Ds or not.
Thanks so much for the post. I really feel sad that the perception is that it's unpopular to be honest. We ALL have these moments, whether we publicize them or not, and I don't know a single mother that doesn't take comfort in solidarity. So please, keep sharing.
We had a sort of similar experience recently. My husband got all excited about going out to buy our son his first bike and teach him to ride. We picked out the bike, and our son was really excited, but then when we got him on it, he just didn't care. Doesn't care about making it "go", and frankly doesn't care much to even sit on it. My husband was visibly deflated, and we both had a moment of "why can't we just have a typical parenting moment teaching our kid to ride a bike??"
I for one gain so much insight from reading your posts...my son is 3.5 so it really helps me to prepare for things to come. And you are doing such a fabulous job with Kayla - she seems very well socialized, functioning well, and developing a great relationship with her brother. Keep on keeping on, and know that there's a huge community out here supporting you.
I think it's great that you are posting real stuff like this - this is part of your life and who you guys are! I understand the feelings though - I used to be on a message board and ended up leaving because they said from my posts I clearly liked one of my kids better than the other...when really I was just having more trouble with one of them at the time and seeking advice..ugh. Anyway don't be too quick to blame this behavior on her DS. I have a 6 year old too and we have similar challenges sometimes - esp. if they are doing something they don't enjoy. Maybe she's doesn't seem interested just because she's not?? Maybe playing ball is not her thing? Anyway ((Hugs)) and I hope you figure things out.
I'm sure I'm echoing everyone here, in that I just loved your honesty in this post. I'm so glad you wrote about this, because I have felt this way often. I have blogged about this on a few occasions, although not so eloquently.
I believe that it is true about how our kids need more structure. I kept this in mind when looking for a private preschool for Sammi for this year. Having a chaotic field full of children and adults would absolutely cause a child (ANY child!) to lose focus or interest. And baseball, having to wait for such long periods of time for anything to happen, just may not be the right sport for Kayla. Have you tried her with soccer yet?
Again, thank you for posting this.
Thank you for your honesty. Although Caleb is younger, I found myself having similar thoughts the other day. He was being so grumpy and I wondered if it was because he couldn't say what he wanted the way his twin sister could. I'm sure we'll all have days where we ask, "Ds or not?" I'm sure we'll all have times (hopefully not often) when we wonder if life would be easier if Ds wasn't involved. All human stuff. Wonderful post! Thank you!
I think we all feel the same about posting negative things, but life is not always roses FOR ANYONE. it is LIFE. I hate you ahd this bad experience but we know this means nothing bad about K nor ds. It is ok to vent :)
{hugs}
I have the same thoughts at times regarding my daughter (we recently adopted). She is Deaf and behind in all areas due to her life thus far. Some days it is hard to remember she is not a typical twelve year old and I shouldn't expect her to be. At times I do though. Then I am hard on myself!!!
I started blogging again. Stop by when you can. I will be including a lot about our life with Little Six (our new daughter.)
I have been feeling the same way lately, and just couldn't bring myself to blog about it. It is reassurring to know that I am not the only one out there. After reading through the comments it looks like there are a lot of us out there that are too afraid to say what we feel sometimes. Down syndrome has not ruined our lives like I was sure it would before Rachel was born, but now that she is almost 7, I am wishing that she was becoming independent as quickly as my two older girls.
Please allow me to join you on the Unpopular Bus, k?
Shoot, I love my kid, but Ds? Ds can go somewhere. For realz.
I also wonder about what I write sometimes. It takes time and a lot of effort to find that comfort zone, I think.
I'm glad you're being honest here. Sometimes I wonder if you've ever had those thoughts at all, because there are plenty of days when Micah seems to embarrass me. I've learned to laugh off a lot over the years, but there are some things you can't laugh about, or ignore. We're all human, and kids will be kids, and bad days happen. And yet, I wouldn't change this course that I'm on for anything. Nor would you, I'm sure.
Well, you know that I don't have a child with DS, but I will admit that I have thought that same thing about each of my children, for different reasons: "I wish he didn't have ADHD and SPD" "I wish he wasn't so aggressive and overactive" "I wish she wouldn't be so dramatic"
I think it's natural to not always like everything about your children.
Also? Baseball is boring. If she's a runner, put her in soccer. There are only a few rules and (at her age) the basics are just running from one side of the field to the other. It's about activity and learning coordination which sounds like something Kayla could benefit from. I love soccer because EVERYONE can play, no matter how fast or slow or athletic they are.
I just started a blog last month and haven't posted much or added pics yet. I will connect with everyone when I have the time to work out the details. In the meantime I just wanted to say to you that we always need to remind ourselves that even though our kids may exhibit troublesome "behaviors" more often or maybe even to more extremes than so called "typical" kids, the good still far outweighs the challenges. My daughter with DS is 7 and I have cried many, many times over the past 4 years or so (her behavioral issues started around age 3), wishing I could change that one aspect of her life with the extra chromosome. She is definitely judged more harshly by society, and it kills me to see that the standard she is held to appears to be so much higher than the expectations for the "typical" kids. If she steps over the line just a touch, she is met (not everywhere thank heavens!) by an "oh we can't have that" sort of attitude by people who have no clue what having a cognitive disability is like. Our kids have to work so much harder to achieve everything and yet they are judged more harshly at every step. There is obviously something wrong with that. And, let me tell you that my "typical" older daughter, a 14 year old, makes me cry more often now than her little sister does. I was definitely not prepared for the daggers she would stick in my heart most days when she decides to present me with her teenager "attitude." Parenting is the hardest job on earth, no matter what our specific concerns are. Keep up the good work, post the good and the bad, and let's remind ourselves of the reasons we keep up the fight for our kids.
Missed this one Michelle! We all have those days and I think it has as much to do with our own feelings of exposure and vulnerability as others perceptions.
1) baseball is very boring for most kids under 12. My personal belief after surviving t-ball is it shouldn't be done. I myself, an excellent ball player did not play much more than catch until I was 11 when I moved up to street ball and no teams until I was 13! It's borrrrinnnggg! Many kids put the cones on their heads, pick their noses and eat the snot,melt down- it's the norm.
2)Even typical kids do weird embarrassing things but I know I have a special sensitivity with Kayli. If she has a dirty face or flaw I find I get all tense and I have more of a drive for perfection as though it can make up for her DS stigma.
3)You are a wonderful mom and person- it is normal to experience the gamut of feelings and thoughts
4) all that behavior means is that she wasn't ready for that kind of activity- it's okay.
Hugs and well wishes- try soccer or basketball (on the opther hand soccer since Kayli at Kayla's age was always handing the ball to the other team with big smiles!:)
Oh, hun, I feel you. I have these same issues with Henry every. single. day. For him, this kind of behavior is the default. I cannot tell you the number of times I've been embarrassed to be out with him in public, because he most often will behave abominably. Between his DS and his sensory issues, he's almost always hitting, throwing & kicking to get his sensory input.
I totally understand how you're feeling. Too often, I feel like I have to apologize to the world for the very existence of my son because being around him can be so disruptive. But there is NOTHING wrong with you feeling the way you do. You're a human being and we all get embarrassed, overwhelmed and frustrated by what we're dealing with. THANK YOU for being honest!!
Ben's behavior issues have intensified so much this summer break that I have found myself telling my husband that I love him madly, but I really don't like him in this state. I never fully understood how someone could say that about their child, but after dealing with his frustrations, his autism, his need for destruction and aggression...I get it, and it breaks my heart. Things have steadily been getting worse, but this break has been my breaking point. I find myself just crying about missing the earlier years, before this all started, when he was just -- happy. We have tried so many things, diet, nutrition, behavioral psychologist...I hate to say it, but we are considering meds. I don't expect it to cure his autism, but the irritability and aggression toward others makes life very difficult for him and for us. School starts Friday, and with a new principal, no less. Cross your fingers for us.
Thanks for posting about the not-so rosy side of life with a child with special needs. Sometimes I feel that I am all alone in the DS world and can't really talk about the severity of what we are going through without just getting sympathy. I appreciate your blog and look forward to reading it with every post!
You just made me cry but your honesty Michelle. We all feel like you do. It is so normal, but it is so up-lifting to hear someone actually say it out loud. Thank you !!!!
Ruthey x
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