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ho had come to our buddy walk and absolutely loved it the year before wanted to know what she could do to break the ice with him her mom suggested she find something he s interested in and bring him something related to that he was interested in star wars she brought him a book and they ve been friends ever since with a bond likely never experienced by either of them before her eyes are open now to others who may be misunderstood who may have problems adapting socially who just need a friend she s a girl scout last month the girls in her troop were given a project to do research on a topic and present it to the group for a badge she told her mom she wanted to do her project on down syndrome can you see me smiling from wherever you are this young lady is one of the people who will go on to change the world this young lady is paving the way for acceptance tolerance and respect for people with differences this young lady is teaching lessons in humanity to say i m truly impressed is an understatement i told her i d love to be her mentor on the project to help her with some of the information and to be there on her presentation night to answer any questions and she s excitedly accepted my assistance i m really not sure who s more excited her or me a different co worker approached me a few weeks ago to tell me that he d just discovered that his niece was in samantha s class he doesn t live in our town he probably didn t even know what town i live in curious i asked him how he d pieced together that information he said that he was in the room with his sister when his niece came home from school excitedly telling her mom about a little girl in her class that she absolutely loved a little girl with down syndrome named samantha my co worker has met sammi several times and figured it out immediately how cool is that a little girl in her class that she loves this is 3rd grade any differences are totally obvious laid bare ever present and part of the day to day my daughter is accepted by her peers yes i knew this already but this year she s in a class with all new children only two of whom she d had class with before a whole new crop of kids exposed to her larger than life personality her quirks her idiosyncrasies her endless supply of stubborn and they accept and love her they too will go on to teach others the same acceptance tolerance and respect they too will teach lessons in humanity the world will continue to become a better place for everyone one new teacher at a time posted by becca at 8 13 am 11 comments email this blogthis share to x share to facebook share to pinterest monday october 6 2014 day 6 31 for 21 trying too hard so as i knew i would i missed a day yesterday it was our buddy walk so we were out of the house early and pretty beat by the time we got home i was just going through some of my old posts to see what i could give you today and came across this one from october of 2010 when she was 4 years old about trying to make fun positive memorable experiences for our children a lot of what i had written below still holds true today although my understanding of samantha s reticence has grown and my ability to recognize triggers and environments that will not work for her has become more finely tuned so i m able to avoid them samantha is able to give me her own opinions about things so sometimes just asking her will give me the answer i need before we barrel into a situation that becomes unpleasant for us both it s not easy for a lot of parents it hurts when our children are unhappy and it hurts when our children resist things that we ourselves would deem as highly enjoyable we expose them little by little to new things new places new ideas we hope they will adapt more as they grow and we learn to make concessions to avoid what we know to be disastrous are there things i wish samantha would enjoy doing ohhhh yes i could go on and on about those have i set them aside and stopped badgering her about doing them when she clearly doesn t want to mostly am i hopeful that one day she ll change her mind or her triggers whatever they may be will disappear and she ll be ready willing and able to do them absolutely but i won t count on it just to be safe october 4 2010 sometimes i feel like i try too hard to ensure that samantha is having great and varied experiences i ll read the blogs or facebook posts of other people and wonder why can t we do that for example people will take their young children including those with ds camping or to ball games or hiking or to music festivals and i ll just think no way on earth will sammi sit still for that or she d have a meltdown not worth chancing it but i think we should lastnight we watched a sitcom rerun where a married couple accidentally picks up the wrong family s pictures at the drugstore photo processing counter they become obsessed with the idea that their lives are dull and that they should try to do all the wonderful adventurous things the other family did so they tried and felt rediculous they realized that their lives were rich enough with the experiences they had mundane as they may seem a pretty timely program to have watched after yesterday but i didn t actually realize it until now as i write this post so i do try to take samantha to different places but her difficulty in transitioning often leads to frustration for me and what i perceive to be torture for her granted she s certainly better than she used to be and sometimes she really does have fun yesterday started off well enough it was probably the most beautiful day we ve had in about 4 months i had gotten her pretty excited about going to a pumpkin pick on a farm run by a lovely family who open it up to our down syndrome association every year for a day of festivities and celebration her aide n came with us i m always happy to have an extra set of hands and thank goodness i did yesterday samantha who has remained dry for all but sleeping hours for the better part of a few months now fell asleep in the car on the long ride to the middle of nowhere she was wearing a pull up i haven t gotten brave enough to eliminate them yet she was soaked when we got there sopping wet complete nappy failure and horribly ambitious optimistic unprepared mom that i am i didn t have a change of clothes or a clean pull up what kind of mom does that ugh so n stayed with sammi at the car while i ran to the group to filch off the good graces of a few folks with kids that may be approximately sammi s size bingo a fresh pull up and a pair of pants hooray next adventure of the day a still tired super cranky child who became obsessed first with cookies then with an open police car set up to allow kids to explore pulling her away and re directing her from both was not pretty but we were there to take a hay ride out to a field to pick pumpkins and damnit that s what we were going to do that was the wonderful experience i was bound and determined to make for her here was the result these photos really really pain me i feel so guilty for dragging her out there forcing her to pick out a pumpkin forcing her to sit for a photo that she didn t want to sit for but that i wanted to have so we could see later what a fun time we had i m pretty sure pms fueled some of my own crankiness and insistence but it s not like she didn t have any fun at all there were moments mostly captured by someone else s camera since smiling for mommy was not on the agenda by the time we got back to the car we were all completely done nothing could possibly feel better than to sit in the air conditioning and get the heck home except a quick need by samantha for the portable potty i carry around in the trunk as i loaded up the car n pulled sammi s pants down to situate her on the little toilet unfortunately there was a miss resulting in the soaking of the borrowed pull up and the borrowed pants sorry heather they have been re washed though and there was a bottom less ride home sammi s gauge of how people are feeling when she suspects something is amiss is to ask you happy on the ride home she said n you happy to which n replied yes n said sammi are you happy to which samantha replied yes mommy mad yikes reassurances to the contrary followed btw when it rains it pours i know i probably just need to chill out a bit take the time to smell the roses put my camera away nah posted by becca at 1 36 pm 2 comments email this blogthis share to x share to facebook share to pinterest saturday october 4 2014 day 4 31 for 21 2012 q a i posted this back in 2012 during 31 for 21 it was part ii of a q a happy saturday everyone ____________________________________________________________________ october 2012 i m a little bit sad because i don t actually have anything to do planned for this weekend and like i said in yesterday s q a i feel guilty for those lazy weekend days when we don t do anything especially if the weather s as beautiful as it s supposed to be tomorrow ah well there s always a pumpkin patch petting zoo library mall playground just waiting for us maybe it s time to pull some playdates out of a hat so back to answering questions here s one of the triple barrel variety q when did you feel like everything was okay and when did you stop wondering what others thought and where is your favorite place to shop for sammi s amazing clothes a good questions feeling like everything was okay is pretty relative while still in the hospital with the support of my husband saying everything would be okay and the information given to us by the social worker showing me a glimpse into a possible future for samantha i kind of felt like things would be okay like we could do this after all but was i truly okay with it not at all it wasn t an overnight transformation although i was able to put on a brave face and show people honestly how in love with my baby i was how happy i was to have her but i did mourn the child i didn t get the future she certainly wouldn t have and the struggles she would have to face how can i protect my child that was what really broke my heart as samantha grew and thrived both before and after her open heart surgery at 4 months her personality began to really shine through the brightness in her eyes and her smile the magical way she captivated us and anyone who came into contact with her her strength and determination that s what really made me begin to realize that things would be really okay already the vision of that blank slack jawed woman child shuffling along behind me was gone just like that already i began to see snippets of our future lives together the things we would do the things we would see the things she could accomplish and then i knew it would be okay certainly it wouldn t be without bumps and struggles but those were nothing compared to what i d originally envisioned it took a bit longer to stop wondering what others thought i never actually worried what they thought of samantha she usually had everyone eating out of the palm of her hand on first glance and i never had reason to think people had negative thoughts about her or about down syndrome no negative comments no sideways glances no signs of disdain but i had this weird irrational thing in the first year where i worried that because i seemed was so happy with my daughter because i didn t wear a my daughter has down syndrome badge on my arm or across my forehead that people would think oh poor thing she doesn t know irrational like i said and so during that first year i felt compelled to bring it up in conversation all the time usually with complete strangers i m sure part of that was born out of my need to talk about it myself i m not exactly sure what spurred the turning point after that time but just after she turned 1 i began blogging i m sure it s no coincidence that that s when i stopped caring what others thought okay fun stuff sammi s clothes stay tuned for my new blog i m going to put up likely not until the new year when i can get everything together it ll have photos and information about sammi s clothes and where to buy cute kids fashions without spending much money in the meantime i ll tell you i get them from any number of sources i buy bits and pieces that can be easily layered or combined with others almost always on sale we have a great children s thrift store selection nearby where i ve been lucky to obtain some amazing finds but as far as retail stores go i usually get things from target naartje check out their website amazing prices and sales gorgeous stuff and children s place along with anyone else who happens to be having either an end of season or going out of business sale stay tuned for the next set of questions thanks for indulging me posted by becca at 9 16 am no comments email this blogthis share to x share to facebook share to pinterest older posts home subscribe to posts atom grab this button grab this button grab my fashion frugality for kids button grab this button grab this button i m 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