Monday, October 22, 2012

Social...


I am very sensitive about anything social with Maddie...my first impressions of a young woman with Down syndrome were very scary to me...and when the dignosis of Maddie was real it was what I pictured in my head...and through the years many of the stereo types have been broken down...but still I am very sensitive and over protective over anything Maddie does in public or socially...having a home daycare has intensified this so much that at times I have thought of it as to much emotionally for me...I have a home daycare to raise my children in an environment providing a educational/home based setting...my background is in early childhood so it was a perfect fit...with Max it was fun and rewarding...I loved to teach him and watch him be mentored by older kids all under my watch...then Maddie came...when I reached out to our local child development center that would provide services to Maddie one of my first questions was do I keep having a daycare...or will it be to much for her...really what I was asking was would it be to much for me...they said this setting was the best setting for Maddie's development...that it would model and nurture what she needed...so I never thought twice about it...my home daycare became Maddie's classroom....and my greatest fear...no longer was it fun to watch what my child could or could not do...no longer was it fun to see her excluded from play because of the lack of communication...I struggled with watching children who are younger then her pass her by with milestones and words...I think struggle is a kind word for my true feelings of saddness...day in and day out I watch what Maddie cannot do...for the people who say Maddie is good for Maddie...yes that is true...and that she has mastered a lot of things...but not at the rate I have come to expect...and this truly is a members only understanding that no one can understand...unless you are the mother of the child that is not doing a particular something...Maddie socially has always tested as typical and above average on the charts...but what those tests do not do is show the whole picture...yes Maddie can play dolls and dress up, she can zoom cars and roar like a dinosaur...but what they do not gauge is how the interaction happens...Maddie does not take no for an answer...she does not except when I am finished you can have the toy...yes this is typical for a one year old...it is not for a three year old...negotiation for toys begins at age one...understanding a trade...maybe not a fair trade but they understand the give and take...by age two they understand the quality of a trade and the give and take that happens in a child's negotion of a desired toy or tool...Maddie thinks she is above the trade and is very elementary in her negotiation skills...I have always said the most important thing to teach a child before kindergarden is how to get there shovel back from a child that has taken it...without tears, fighting, or just taking...by proper negotiation...Maddie is 3 and she cannot communicate to get her toy back...she will scream, tackle the child down and take it back...socially this is not acceptable...funny...but not in the "real" world... if I did not know better I would think Maddie is ok...but I do know better and I know what her interaction should look like...and I think she does to...but her impulse control is off the charts...she cannot keep her hands to herself...her screaming and stomping is alarming to say the least...Maddie plays very good with kiddos that are a bit older that are willing to accommodate her every wish...this is the real world and most kiddos do not want to play like this and nor should they be expected...I will tell Maddie no and redirect her 100 times and she will do it again for good measure...I have never met a more stubborn child...I know she knows better...I can see her wheels turning but she just wants it that bad she will not give up...I do enjoy her milestones and celebrate all of them...what is nothing to some -is huge to us...the other night in tumbling the kids did not want to sit by Maddie and were saying she was a baby...she is older then all of them...but that is there perception of a girl that is small in stature and cannot communicate with them...my daycare kiddos will treat her as a baby also and I have to remind them she is a big girl and will be included and that she can do things herself...most of these kids are younger then her...but they see her delays...I still get sad by each comment...I still cry when I see her struggle...I still want to protect instead of seize the teachable moment...I also do not want to force the issue with others or with Maddie...this is a unknown of helping raise a child that I am very unfamiliar...Maddie is so many things...good things...great things...I am just at a loss when it comes to her interactions with the outside world...in the beginning I would be offended by the smallest or biggest of things...now not so much...now I get a sting...a pit in my tummy...quick...I rationalize each comment or gesture...but the reality is the same...Maddie will always be good for Maddie...but i am not sure if that is good enough for me...when do I stop making excuses for things she cannot do and excuses for the perceptions that people have about Maddie...when is it politically correct to be honest about my expectations of myself Maddie and the public...when is it ok not to apologize for Maddie yelling at a stranger in the mall; because that's her telling her story...when is it ok to tell the person that used the "r" word that it offends me and that I hate them for it...when is it ok to tell the old women that my pointing staring and whispering at my child is not a compliment and is really annoying...and how do I get it through to people that Down syndrome only means one thing...an extra chromosome...that's it nothing more...and it's ok not to attach anything else to it...no but...no and...no nothing...Down syndrome means a 3rd copy of the 21st chromosome...no need to think any more about it...

7 comments:

  1. Social stuff is hard. A lot of Claire's biting happens because she doesn't understand social interaction. Another child is too close and she doesn't like it...bite them. A child is done dancing with her and she doesn't want to quit....bite them. I would take tackling any day. :)

    What you said about negotiation is interesting. The other night at dinner Claire wanted a chip. We were having chili and she was having fish (which she usually loves), but all she wanted was a chip. We bargained for. ever. One bite of fish and I'll give you a chip...and she wouldn't do it. I'm really not sure if she understood what I was trying to get her to do.

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  2. Oh that stubborn side, I see it everyday too! Sutter will let kids take what he has and move on which I guess is good, but I'd like him to learn to stand up for himself a little more...we're working on it when Landon takes things from him! I'm trying to teach them both the art of "trade"...it's a slow process.

    Sutter's latest "frustration" or I don't know what you call it (I should post about it for feedback) is to bonk his head on something when he doesn't get his way or what he wants! So if I tell him "no" or punish him for doing something naughty/wrong he'll hit his head on the wall, floor, counter (whatever he's near) then he grads his head and cries (usually fake) for sympathy to avoid being in trouble!

    The social challenges are the hardest for me because I feel like what Sutter 'shows' people in public is what they will think we've taught or allowed and that's just not always the case! That extra chromosome packs a ton of cute but also a ton of extra worries and hurdles!

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    1. Just wanted to tell you Wren that Russell bangs his head on the wall or floor when he is mad too. It's really frustrating...And he does it really hard I am surprised he has not knocked himself out yet!

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  3. I have to constantly tell myself to stop worrying about what other people think. I just try to treat Lucas the same way I would any of my other kids. It's hard though to see the delays more clearly everyday.

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  4. You have nailed the hardest obstacle I see with your words. Right now our biggest obstacle to overcome is social behaviors...behaving like her typical peers...and how do you teach that? How do you deal with others in the meantime too? Great post. You also make me think...reflect...thank you.

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  5. I can relate to everything in this post kim. I too struggle with Russell and social behaviors...It's tough. My heart hurts every time a child younger than Russell treats him like a baby.
    I don't know, lot's of things in this post really struck a cord with me...This post was a nice reminder for me that I am not alone in all this, that we are all going through this together. As always I love your honesty and willingness to share what you think and feel.

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  6. Kim this post is so heart felt and you have articulated something for me I was barely aware of the growing social divide, the kids at preschool treatowen like a baby too, so hard to see him excluded because "it's not for babies" and Cys best friend is a kid not much older than Owey, they have beautiful little onover stations together and it sucks that Owen and Cy don't have that......I am still feeling robbed over that

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