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er did not try to have rowenna sit down as long as a behavior is not harmful to another child or too distracting for an activity children are usually left to make choices like this her teacher had also pre emptively let me know that rowenna would probably do this and that it would be fine with her and while rowenna was the only one standing and the only one moving she wasn t terribly distracting in fact i got the distinct impression that her classmates are used to her doing this and even heard a delighted exclamation or two from her classmates of look at rowenna dance i ve learned more than once over the course of this year that children really are so accepting of differences and the things that might cause an adult to raise an eyebrow are simply seen as a classmate embodying her joy but while watching my girl soak up this music and participate in her own way i stole a few glances at the other parents most were absorbed with their own children and rightfully so but there were a few casting quizzical glances at rowenna and occasionally looking back at me clearly my child was not demonstrating age appropriate behavior even the 18 month olds in the group were sitting quite happily as they sang clearly there was something different about rowenna and in those quizzical glances i could see them trying to figure it out rowenna was crossing a line by not sitting with the other children but she was also quite obviously happily engrossed in her movement sometimes i wonder about the line the line between allowing rowenna to simply be rowenna and helping her understand social boundaries and customs maybe that seems too much to consider at such a young age but considering rowenna s slow but steady learning curve it s good to plant little seeds ahead of time and to watch them blossom later where s the line between simple compliance and autonomy what do i take from her if i insist that she simply comply but what do i take from her by allowing her to act on impulse where is the line and how do i successfully straddle it so rowenna has some autonomy but also some understanding of what it means to live in a society to be a friend to be a classmate when do i meet her where she is developmentally and when do i ask for age appropriate behaviors is montessori with its safe environment for exploring things of interest to rowenna the best choice for next year or would a more structured environment that functions on the idea of compliance be the better choice how important is it that rowenna sit in the circle or is it more important that all children have the freedom to dance with her in the middle of that circle for what it s worth if any child had wanted to join her in that this morning they would have had the freedom to do so and i suppose that brings me back to what we ve been turning over in our minds all year what is the best school environment for rowenna what is the purpose of a 3 year old attending school do those reasons apply to rowenna and if so in what way and as always i m left with many questions and nearly no answers but time enough to figure it out 12 may mother s day posted by garden of my heart in uncategorized tagged miscarriage mother s day pregnancy loss 1 comment it s mother s day and i want so much to simply celebrate the girl who made me a momma i want to be able to say i ve been pregnant once and have one beautiful girl i want to go back to the time when pregnancy meant a baby in 40 weeks for my family to grow for my girl to be a big sister but here i am three pregnancies and one sweet girl and the knowledge that babies don t always stay knowing you can watch your belly grow only to have it fall slack it s days like these when i long for the baby that should have been in my arms for months now or to run my hands over a big pregnant belly just three weeks from clementine s due date it s days like these i ache with loss when it seems my entire facebook feed is full of babies and bellies and i m here with my girl but also a sense of emptiness these kinds of days are few and far between for me now but the idea that i should be celebrating my motherhood and womanhood just doesn t ring true this year it feels empty and like i ve failed in some way since sharing clementine s loss i ve heard from many of you and for that i am grateful it seems there is a large silent sorority of sorts women who carry a secret pain the world cannot handle hearing about or maybe we cannot bear to talk about there is no secret handshake or sign to know we ve crossed paths with one of our sisters maybe just a sad smile when they hear you stumble over saying you have one child but hope so much for one more or the shared cringe when someone offers some well meaning but ultimately hurtful advice we plan to spend the day arranging our flower pots and prepping the vegetable garden i want to sink my hands in the earth that cool and calming home for things that grow i want only to plant and water and nurture to watch my girl explore and dig and hear her shriek with delight at the sight of colorful blooms and that s what we ll do just the three of us 8 may an end posted by garden of my heart in down syndrome transition tagged birth to 3 down syndrome therapy transition 6 comments we re nearing the end of an era for rowenna in 3 short weeks my sweet girl will be three and she will finish with the birth to 3 program it s a hard stop on her third birthday everything just ends no transition no easing into the next step rowenna s situation is a bit different in that we re going straight into summer so while kids born during the school year would have therapy one day then public school the next we get a three month cushion in between people have expressed concern that she will go three whole months without therapy but we re not worried and neither are her therapists summer is the best time for natural therapy she will have plenty of opportunities to run and climb pt dig draw and fill ot and chatter up a storm with everyone we meet on our summer adventures st we ll never know if the therapies themselves have made or will make a difference for rowenna and even after three years i m left with some lingering doubts about the message it sends to families to have professionals intervene from birth but what i do know is these three women are family and we will miss them very much and that there s something to be said for a team supporting a family in these early years cheering them on and empowering them they have been with us through surgery hospitalizations and endless random viruses they have sent supportive texts and made concerned phone calls when rowenna would throw us for a particularly wild loop and we all worried together about what would be they have been with us throughout all my forays into advocacy and through all my chattering stream of consciousness monologues in which i wonder and dream aloud about my girl they have supported us in every choice every step along the way never questioning and always providing gentle guidance and support and i believe without a shadow of a doubt that they care about my girl i was out of town at a meeting today so my dad was holding down the fort he took some pictures for me since he knew we were nearing the end of our time with our team i kind of laughed it off my dad is a lot more sentimental than i am but when i sat down to flip through the pictures i was surprised to find tears spring to my eyes i ve spent hours upon hours with these women and have always been glad to see them but it took seeing them through the lens of a camera in pictures taken by someone else to see to realize how they see my daughter pt and ot joint session i think they like her and i know rowenna likes them she runs to the door when the bell rings and i tell her miss d is here she excitedly peeks into their big bags full of fun things to explore she is all smiles all curiosity admittedly there are pt sessions when she seems hell bent on showing just how good she is at sitting on the ground and not moving but on the whole it s always been a positive experience for rowenna speech therapy so as we finish our time together i am grateful i am glad to have had a team who saw only rowenna and not her deficits went along on my crazy ride of no developmental assessments or homework assignments or arbitrary tasks made everything about how rowenna can be a bigger part of our lives our home and our community smiled laughed danced and made silly faces to make every single session something for rowenna to look forward to listened to my worries about her health cheered us on as we placed her in preschool engaged her with ever more clever activities and learned to read her little nuances and always always celebrated my sweet girl for all of that and more i am grateful 26 apr hope bigger than fear posted by garden of my heart in down syndrome tagged dignity of risk down syndrome hope 2 comments i m just home from a conference i spent 2 days surrounded by families and individuals with disabilities at a conference about life in disability world the ins and outs of service systems how to advocate for yourself and for systems change and discussion of the big ideas that cause us to step back and look at those systems with a critical eye self determination was a prevalent theme the dignity of risk cropped up here and there as well it certainly goes hand in hand with self determination i d argue it s one of the guiding principles after all self determination is about guiding your own life and don t we all sometimes guide ourselves into uncertain situations when we feel the payoff outweighs the risk and haven t we all failed at something only to learn something about ourselves there is dignity in choosing something for yourself even if it is risky or ends in failure for me the dignity of risk is the ultimate sign of independence more than having my own home or having attended college or driving a car here s where raising a child with a developmental disability feels a bit different the stakes of failure seem so much higher it s easy to worry and in that fear to hold your child back and frankly there will be a lot of people around you telling you it s ok to hold your child back that it s better smarter safer i think about all i hope for rowenna s future for her to be happy to feel fulfilled to be an integral part of her community i hope for her to have real friends and things to look forward to and be excited about the trappings of all that the whats and hows are less important rowenna will guide us there but there are fears too what if we can t figure out a way for her to achieve her goals on her own what if we can t find a good team that knows and loves our girl and are willing to support her self determination what if we allow her the dignity of risk and she gets hurt emotionally or physically one of the speakers said something i m going to tuck away for those days when the fear looms big and i want to sweep my little chickie back under my wing make your hopes bigger than your fears it s so simple so beautiful and yet i know there will be days when it s a challenge to remember but it will be there and i ll use it to remind myself to keep adding to my hopes for my sweet girl and her future 21 apr open letter to ndss and ndsc posted by garden of my heart in down syndrome tagged down syndrome justiceforethan ndsc ndss 5 comments i read that you are seeking information from the community about the proposed law enforcement training program you plan to help implement as mother to a child with down syndrome i would like to share my thoughts it seems your support of a training program is a foregone conclusion since you feel you must support such a program i urge you to consider the following as you move forward consider the precedent this kind of training sets should law enforcement officers harm or kill a person with down syndrome in the future if the officer involved has not yet received this special down syndrome training will he or she be able to use that in their defense will the three men responsible for mr saylor s death be able to use that in their defense when writing this training please be clear how exactly lack of specialized training led to mr saylor s death and please be clear that lack of this kind of training is not an excuse for poor decision making consider the precedent this kind of training sets by establishing a false standard for down syndrome there is no one set of diagnoses or behaviors that defines a person with down syndrome individuals with down syndrome share one thing and one thing only a third 21 st chromosome outside of that they are as unique as you or me as an example for each person with down syndrome who does not mind being touched there is another who reacts negatively what will the training teach to touch or not touch this could make a significant difference during interactions with law enforcement examples like this are many too many to craft an effective plan for working with all people with down syndrome training to a false standard of down syndrome only creates further confusion for those working with this population a person with down syndrome will react as an individual based on his or her individual needs and on the unique situation no amount of specialized training can teach law enforcement what they should already know treat people with respect keep calm read the situation carefully and do not escalate unless all other options have been exhausted and the person is an immediate threat to himself or others consider what this kind of training says about the down syndrome community at large it furthers the belief that community members require highly specialized training to work with individuals with down syndrome an argument often used to deny individuals access to jobs schools and other community resources just this month a teenager with down syndrome was denied a gym membership because the gym has no qualified staff this concern is real and immediate what will the training teach that being a reasonable kind human being cannot people with down syndrome require dignity respect and perhaps a little extra time or a little extra support no one needs special training to work with them spend time with them or in the case of law enforcement to protect them i urge you to please consider these three points as you develop training for law enforcement please do not let this become a step backward for the down syndrome community s push for independence dignity and respect older entries good links baha i faith down syndrome association of wisconsin weeding through info what to say about down syndrome follow us email address sounds good blog at wordpress com the garden of my heart create a free website or blog at wordpress com subscribe subscribed the garden of my heart join 60 other subscribers sign me up already have a wordpress com account log in now privacy the garden of my heart subscribe subscribed sign up 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