But it is not...a secret...so in the hospital this past weekend the nurse asked me if Maddie has developmental delays...I ask her if she was serious...she said yes...I said you do understand what it means to be born with Down syndrome...right...she said yes...but I was thinking -no...Maddie was born with a extra chromosome...there is no reason to pretend that it's not there...Maddie is a product of how the sperm met the egg (meiosis)...I am sure some people like to think it is more...it makes them feel better like it is not their fault or what ever the reason may be...but a huge pet peeve of mine is that when you are talking with me...never pretend that the disability does not exist...or minimize it by saying she is like everyone else...she is not...Maddie is unique...and that is ok...Maddie learns different...and that is ok...do not whisper to me about things you notice...and for the love of humanity do not tell me about your second cousin or friend of a friend that had a child born with Down syndrome...I do not care...like ever...I may smile...but it's just because I am nice...
kind of...
Maddie was born with Down syndrome...I actually want her to marry a person with Down syndrome...I want her to be best friends with a person with that extra chromosome...seriously I do! I also want her to go to school with kiddos that also have extra challenges...to be honest a "normal" child just does not cut it for me...Maddie was born with Down syndrome and it does not make her a second class citizen...she is not high functioning or low functioning...she is a 4 almost 5 year old...she has selective hearing and a stubborn streak..
and...
exactly...
Maddie is her own person (human)...the extra chromosome does not define her...please do not minimize it by telling me you didn't notice she was born with an extra chromosome...because you did...and I am not ashamed or embarrassed about it...embrace the cuteness...
Please do not assume I want my child to be in the same classroom or activities as your child...and let's not pretend you did not have a fleeting thought of "oh no" Maddie may be in my child class/activity and take away from the learning time of my child..you thought it...it's ok...i get it...but it's not really ok is it...because I have to fight to be in the same room as a "normal" kid...she is a human with rights...that's it...and I do not want to have to explain it...or feel it...I want people to see Maddie for Maddie...not what the politically correct version of today is...it's that simple...I want Maddie to have people around her that like her because she is a great kid...not because it looks good for them...will I trust a "normal" kid/person that wants to be Maddie's friend...probably not...they can earn my trust...but it will be hard...because I am just that way...I have a home daycare...and the kiddos struggle to understand Maddie...Maddie sounds angry when she is not...she plays aggressive when she is trying not to...when she touches a kiddo she will pat her belly first because I have taught her since she was very young hands to self and then pat her belly with her hands...she thinks about it...and she always tries...but most of time it ends in a redirection with what should have been the appropriate touch or word...in reality Maddie's interactions with others can be awkward and strained....please do not pretend my WHOLE child does not exist...she does and that includes the extras that come along with it...I am ok with it...and it's not a dirty little secret that should be ignored...
When being in the company of me think before you speak...understand your words and actions matter..it's not really that much different then me saying to you...so does your child have developmental delays?
kind of...
Maddie was born with Down syndrome...I actually want her to marry a person with Down syndrome...I want her to be best friends with a person with that extra chromosome...seriously I do! I also want her to go to school with kiddos that also have extra challenges...to be honest a "normal" child just does not cut it for me...Maddie was born with Down syndrome and it does not make her a second class citizen...she is not high functioning or low functioning...she is a 4 almost 5 year old...she has selective hearing and a stubborn streak..
and...
exactly...
Maddie is her own person (human)...the extra chromosome does not define her...please do not minimize it by telling me you didn't notice she was born with an extra chromosome...because you did...and I am not ashamed or embarrassed about it...embrace the cuteness...
Please do not assume I want my child to be in the same classroom or activities as your child...and let's not pretend you did not have a fleeting thought of "oh no" Maddie may be in my child class/activity and take away from the learning time of my child..you thought it...it's ok...i get it...but it's not really ok is it...because I have to fight to be in the same room as a "normal" kid...she is a human with rights...that's it...and I do not want to have to explain it...or feel it...I want people to see Maddie for Maddie...not what the politically correct version of today is...it's that simple...I want Maddie to have people around her that like her because she is a great kid...not because it looks good for them...will I trust a "normal" kid/person that wants to be Maddie's friend...probably not...they can earn my trust...but it will be hard...because I am just that way...I have a home daycare...and the kiddos struggle to understand Maddie...Maddie sounds angry when she is not...she plays aggressive when she is trying not to...when she touches a kiddo she will pat her belly first because I have taught her since she was very young hands to self and then pat her belly with her hands...she thinks about it...and she always tries...but most of time it ends in a redirection with what should have been the appropriate touch or word...in reality Maddie's interactions with others can be awkward and strained....please do not pretend my WHOLE child does not exist...she does and that includes the extras that come along with it...I am ok with it...and it's not a dirty little secret that should be ignored...
When being in the company of me think before you speak...understand your words and actions matter..it's not really that much different then me saying to you...so does your child have developmental delays?
This post is AWESOME!!!! I feel you 100%, Sutter is different and I'm totally okay with it...well except the running and lack of fear, that scares the crap out of me and I can't wait until he stops doing it! The rest, I'm fine with! He growls, grunts and plays rough even when he doesn't mean to, he's not like a typical 4 year old by any stretch of the means so I hate it when people say 'it's okay, he's just acting his age'....NO he's not he's acting like a 2 year old in the midst of a terrible 2 tantrum! I feel like people need to sugar coat it to make me feel better....or maybe make themselves more comfortable with the situation...or maybe a combination of both?!? The reality is, Sutter, like Maddie and any other child, is just Sutter. I'm use to his loud noises, his babyish behavior, his stubborn side, his silly sense of humor and is over use of the word NO...it's who he is, extra chromosome and all I simply can't get enough of him! There is a little girl who's almost 5 in his class who also has Ds and her mom and I have decided they are going to get married one day...they already make-out like teenagers (we're working on just hugs and high 5's) so we figure they'll probably be okay with it too! LOL
ReplyDeleteCould have wrote most of this myself! I too want people to see Russell as a whole, Down syndrome included.
ReplyDeleteNot all children with ds have delays. It's frustrating for those of us (the vast majority) who do have delays, but is not altogether an unfair question..
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