tag:blogger.com,1999:blog-66130984439178558262024-02-18T19:47:00.723-08:00Just a Little Muchier Muchness...formerly Just a Little Bit DownsyTiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.comBlogger420125tag:blogger.com,1999:blog-6613098443917855826.post-16125823879291614792019-02-05T20:14:00.000-08:002019-02-05T20:14:22.616-08:00Who I AmI hope to have several guest posts written by adults with Down syndrome. <br />
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I already have one that I am sitting on by a remarkable man, Alex. I have emailed several others requesting posts. I am very much looking forward to any words by any and all of them. I will be including whatever Elise decides to give me, as well. <br />
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I was inspired by a book that I read on Autism. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. It was talking about the history of autism, and that policy changes only really came when parents got involved over the professionals. And that listening to actual autistics will be where the neurological acceptance revolution will take place. I know that I write as a parent of a person with Down syndrome, because for now, Elise hasn't found her voice. I hope that I will know when it is time to let her make her own choices. I know that it will be hard, but I also know that letting her grow up and be as independent as possible will be exhilarating and joyful to witness.<br />
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So, if you know someone who might be interested, PLEASE get us in contact with each other!!Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-56013496580255499162018-12-04T10:58:00.001-08:002018-12-04T10:58:22.136-08:00ToysI have a thing for toys. I mean, I like them as much as my kids. Probably more, sometimes.<br />
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I am completely charmed by the faces and the back stories and the tiny proportions and the magic of what could be made up in their tiny worlds. The itty bitty accessories and conversations that they hold in my head hold me captive, even now, in my mid-forties. I can hold the toys of my childhood and I can smell my mom baking bread and the wet dirt under the bushes where my brother and I played. I am completely in their tiny, fixed plastic clutches.<br />
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I hold on to a lot of the kids' toys for two reasons: 1) because there was always a sibling coming behind that would want/need them, and 2) because they tend to loop in interests. They are completely obsessed for years, and the toys become a part of the fabric of our family, and then suddenly, a switch flips, and could not care less. But, fairly often, they also abruptly remember them and we need to acquire them again. These loops made me nuts because they were expensive to be purchased a second time, if they were even available. <br />
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But as we are coming to the end of our baby years, I am facing going through all the rubbermaids that hold their childhood, and it is a daunting task. It is horrifying in the sheer time it will require. It is nauseating to face the things that will need to be trashed after being exposed the the swings in temperature that Georgia offers in an attic. And the tiny friends that will need to be donated is just selfishly hard on me. Disposing of magic feels so wrong.<br />
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But it needs to be done. Because it's time.<br />
<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-84065628800825882582018-10-11T18:47:00.001-07:002018-10-11T19:04:38.005-07:00Some for 21: Speaking ofYou'll notice my super commitment phobic title. I know I won't be doing 31 posts for the annual "31 for 21", so I just promise *some* this year.<br />
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As I have mentioned so many times before, Elise's speech is her area of greatest delay and struggles. She has both delays and fluency issues. Disfluency being the proper terminology for stuttering.<br />
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We have speech therapy both at school and outside school. She gets it for functional reasons at school and personal expressionism and general communication outside of school. Both therapists have focused a lot of effort targeting the disfluency.<br />
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This week, after a very severe week of gum ups, her outside therapist brought up speech devices again. So I dug out the talk box that we got for her over 5 years ago, charged it up and let her see if it looked like something that can finally help with some support. It looks like the buttons are still too small and the layers too complex, in short, the problems are still not outgrown.<br />
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So I guess we will have to search for something else. I do know that Elise likes to talk. I know that she is willing to go to great lengths to get her thoughts across. I hope that we may be able to find something that will give her all the communication that she so desperately desires.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-50929442284350948392018-05-30T06:32:00.002-07:002018-05-30T06:32:42.751-07:00Putting Out FiresFor almost all of Elise's life, we have been functioning as wildfire fighters. We were actively battling a blaze that could do serious damage, or we were looking forward, trying to cut off one early before it did damage. Both medical and developmental.<br />
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It is exhausting and rather puts blinders on you so you miss other situations in life, simply because they aren't at emergency levels. Sometimes it is stupid things, and you realize that younger siblings don't know how to ride bikes or swim real strokes. Sometimes it is bigger, but you don't realize until you hit code red for someone else. <br />
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I don't want it to be like that. I read a book as a middle schooler that made me worry about situations like that, but as always, just because you are aware in theory, doesn't mean you will be able to stop it. I try to stop, even in crises, to have deliberate moments with each of my kids, but stuff still slid by.<br />
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I am happy to report that we have had several fires to put out for my others lately, and Elise has had a few things forced to slide. I know that sounds funny, especially after what I just wrote, but do you understand what that means?? SHE WASN'T AT EMERGENCY LEVELS!!! Like it was so nice and boring that I missed her growing FOUR INCHES!! FOUR. I just cannot even wrap my head around that. This also means that her health is stable enough to grow. Unlike when she was a baby and she couldn't grow because her body was too busy keeping her alive. Or when she was a toddler and it was trying to fight cancer. Or when she was a little girl and it was trying to tell us her thyroid was broken. OR when she was having such a bad time with puberty that she missed well over half of her school year. Or when her Vitamin D levels were so low she couldn't stay awake. <br />
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I am excited over the height, but I am most excited about what that actually means.<br />
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I am excited that she can get in on THE REASONS I HATE MY MOTHER COMPILED FOR MY THERAPIST list that every child gets to make....and that they whip out when they are raising their own kids...as their kids compile their own list.<br />
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Living life without panic is a good place to be. I look forward to more.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-72328241279680327482018-03-06T10:27:00.000-08:002018-03-06T10:27:06.566-08:00Talking Amongst OurselvesElise's biggest struggle is speech. It has always lagged behind. I think she is "officially" at a 3-4 year old's level. Receptive is a little higher than expressive, but as she is fifteen, it's not like dickering over a year is going to change the situation much. She is not even close to where she should be...and if you've ever chatted with a 4 year old, you know how much gets lost in translation.<br />
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I know that I regularly cheer over how she is playing, but the most recent play of choice is Littlest Pet Shop toys, and, thanks to YouTube, she has started casting her LPS critters in movies, which she then has them act out. Very recently, she has started breaking away from the scripts. They have been having conversations and even songs that do not belong in that particular movie. I know that does not sound like a big deal. But when her favorite drug to deal with stress is to loop 45 seconds of a movie, any kind of extrapolation is kind of a big deal. <br />
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There have been many things that we have not arrived at on time. Like, some milestones are literally 10 years behind at this point, and not looking like they are coming anytime soon. There are, however, things that are right on time, that I would have loved to be delayed until we had the emotional wherewithall to deal with. Like crushes on boys, and planning her future, and well, that list is way too long, too. It feels like there are just innumerable things that just cannot sync up...and are exhausting on their own. Not that they are a barrel of awesome when they come when they should, but without the emotional maturity, they are brutal to deal with,<br />
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But, honestly, that she is play acting her dreams with tiny plastic puppies is pretty precious to me. She recently expanded her play to include furniture. (I know, that I notice this is weird to me, too.) The lining up and sorting into "families" is just as comforting to me, as to her, because it is the one thing I can count on. That, and the incredible mess she will make as she sorts all her hoard of creatures.<br />
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She has fallen in love with Hulk lately. They are getting married. She is having a wedding cake and a wedding dress and it will be on a cruise or a beach. I am not sure why she loves him so much. I don't know if they speak the same language, have the same unbridled emotions, or what, but this crush fascinates me. I will probably get her a Hulk doll, to see if she will play Barbies with him, like she did with her Ironman doll. See if I get any clarity.<br />
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I shall keep you posted, of course. <br />
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<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com2tag:blogger.com,1999:blog-6613098443917855826.post-9164610016502107362017-10-03T14:20:00.001-07:002017-10-03T14:21:32.546-07:0031 for 21: SpectrumIt is 31 for 21 season. 31 posts for the 21st chromosome. Another Awareness. <br />
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As annoyed as I am with the concept of Awareness (you've all seen me say stuff on this), I like to at least make an attempt at the blog posts for Down Syndrome Awareness, because people like to learn during the "fun season". Walks and festivals and celebration make learning easier and more fun.<br />
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When I started this blog, I was sad that there weren't more blogs on older kids. As my own child grows older, I understand why there are less. <br />
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It's hard to discourage people.<br />
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It is hard to say, nope, no massive progression. Again. My kid, while making huge progress for HER, is still functionally non-verbal, because she is still struggling with word sounds and word progression. She still speaks like she is a walking emoji and text acronym, mixed with debilitating stutters, and you have to really work to make sure you know her conversation subject matter, so any of it can make sense.<br />
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We won't even discuss tying shoes or self care.<br />
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It is hard to know that the damage Down syndrome does is a sliding scale with a spectrum of impact, and that sometimes, no matter the intervention and therapy, it's your child at the lower end of the spectrum. It is hard to tell people with younger kids, that not only is it true in theory, but you have a super cute proof living in your house. I'm not one to offer false promises, but I also don't want to be a Debbie Downer...constantly reminding them that sometimes intervention doesn't "fix" everything. That you don't even want it to, you just want your child to not be trapped in their own silence. While at the same time watching while others send their children off to real colleges, and real jobs...and not wanting them to give up hope.<br />
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It is hard to tell people who don't understand, who have kids that function within the spectrum of normal, that nope, your kid still isn't growing up. That while they cry that their babies are growing up, yours isn't, and that is a thousand times sadder.<br />
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I have no real news, but I am going to try to offer her favorite subject matters. So if you know us, you can understand her passionate subjects. And if you don't know us, you can take a page out of this blog, as it were, and ask the parents of kids that you know that are trapped in their own worlds, where the doors are, so you can find a way in. Because despite the static activity at our house, we still have the childhood magic of still believing all the fairy tales, of limitless imagination, and of not allowing reality to take any fun out of your day. <br />
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We believe that tiny creatures that live in plastic houses, have actual feelings and adventures.<br />
We believe in Santa and fairies and Disney endings.<br />
We believe in costumes that power imaginations.<br />
We believe that crowns make supper more delicious.<br />
We believe trampolines and swimming pools are still viable exercise programs, but don't call it exercise.<br />
We believe sharks and crocodiles and sea monsters live in local lakes and do our bidding.<br />
We believe that colored gloves transfer super powers.<br />
We believe in anything we want.<br />
Reality is completely negotiable. <br />
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And really, I prefer supporting the boundless creative, especially in the face of looming disability. Because it is more fun, and doesn't change the narrative. If you don't look into the face of a 2 year old and kill the magic, and just enjoy the ride, why can I not do the same with Elise? So I do.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-79516615333407100902017-08-13T14:12:00.002-07:002017-08-31T07:03:51.513-07:00WE HAVE ANSWERSOr one answer at least.<br />
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Scroll back one post for my frustration at Elise's exhaustion and the lack of response on the part of her medical professionals.<br />
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After three years, we stumbled onto at least part of the answer. <br />
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As a child with Down Syndrome, vision screening is an annual process, with specialists (as it is with everything). So we go usually in February. I was too tired to go then this year, so I got her in at the end of March. She was tested and they decided that her vision was off enough to warrant glasses. But not near sighted, as genetics would have caused us to suspect, but far sighted. They arrived at the first of April. She chose them. Bright, neon pink. I was floored, but decided that if pink would make them fun enough that she would choose to wear them, then I didn't care and she could have them. They are called Rainbow Cookie by Dilli Dalli. They are squashy and flexible and have a headband on the back to keep them snuggled up on her face. She LOVES them. They have a home on her bedside table that they are placed on super carefully when she goes to bed and they are on her face as soon as she gets up.<br />
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The most important part of the story is that she is not straining to see constantly and doesn't get as physically tired. She can see, and is finding better success when she is writing and drawing and coloring. This is keeping her on task longer, is lessening her frustration, and is improving her work. She is not over tired every single day, and is sleeping more deeply and is waking more refreshed. <br />
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Being better refreshed, she is more willing to do physical things. Which segways nicely to my other new good news. I bought a tandem kayak for Mother's Day. My parents are very gracious to watch my kids so I can play on the lake, but this summer, they decided to tour the Northwestern United States and visit family. Consequently, if I wanted to paddle, I needed to find a family option. Amelia is a competent paddler. Charlotte might be. But Elise is not. However, I did discover on our family vacation, Spring Break 2016, that Elise very much liked a kayak and was willing to attempt to paddle. Furthermore, that if she tired, I could manage the whole 13.5 feet of it myself, with no problem. <br />
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So, I got one that I could put Elise and Charlotte on and I put Amelia on Ethan's kayak. It has gone over brilliantly well, and we have gone out several times. Everyone thinks it is grand fun. Interestingly, I put it on their older brother, Gabriel's truck. And as he is in the Army now, seeing his truck in our driveway every day was rough on them. Now they see it as a kayak transport, and they don't cry when they see it, which was an unexpected bonus.<br />
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When Amelia and Charlotte were in VBS, we took out Willow on it. As a consequence, she now has a real life jacket.<br />
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This may not appear to be a huge deal, but when you life stretches out with a daughter that will likely remain at home, that she will be able to participate in an activity that you love, it looks more fun and less wearying.<br />
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She also likes to hike. I mean, she would rather die than walk on a sidewalk or road, but in the woods, she is more than willing to push a little. Also, very hopeful. I haven't sorted a way to keep her from getting painfully hot...but I am going to probably look at a camelback and see if hydration will help.<br />
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But have I mentioned that I feel like I am getting my hoped for life back?? I am. I can live without family biking trips if I can find other "family fun options" that don't exclusively consist of movies and restaurants. <br />
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Hope is a little word, for a big thing.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-11920423062906388412017-01-16T10:24:00.000-08:002017-01-16T10:24:36.598-08:00Long Time, No SeeHi. <br />
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It has been ludicrously long since I posted. And I have no real excuse, but I am afraid that if I don't take a broad swipe at the last 6 months, I will give up posting because there has been too much time that was let pass.<br />
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The short, please understand excuse, is that I kept hoping that I could share hope and answers, and we still have no answers for Elise's exhaustion and soreness. The Vitamin D supplement has made a huge impact, but it has not been the silver bullet I was hoping for.<br />
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Nor have I gotten much encouragement or direction from our doctors.<br />
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In the last 6 months, I have watched several of my friends' kids and family members be excessively tired for less than a month and their doctors ran every test they had available to them, while I had to bully doctors and specialists to run the same ones. It has been up to me to ask for tests and specialist referrals. It has been up to me to read medical journals. I have not come up with any new hypotheses, but I also find myself angry, as it is not my JOB to do so, either. I mean, other than being an invested mom.<br />
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I have not given up, but my panic level is lessened by her physical response to the Vitamin D supplements. I am low grade seeking, but my anxiety levels had gotten so out of control I was having panic attacks and waking in the night. And so I had to give it a rest and allow myself to resolve my own issues before I had to seek medical help myself. Put the oxygen mask on yourself before you put it on your kid and all that.<br />
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I feel like there is a huge cavern between typical kids and kids with disabilities in the worry and care that will spring forth when things are not at emergency levels. Between Elise's general pain, exhaustion, and even her sensory issues I have nothing but proof that this is not in my head. I have become so angry over this, that I can't even be a good friend at times, because I find myself spitting the same responses that I was given 3 years ago when the exhaustion started. That's right, that was not a misprint. THREE YEARS. I blew off the exhaustion for over a year thinking it was normal teenage growth tiredness. I started marking and cataloging weirdness for a year and talking to her general practitioner for a year after that before I demanded testing and specialists weighing in. And here we are with no one worried but me. Not the best place to be, by the way.<br />
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So while I am struggling with medical lack of response path, I do have some incredibly cool stories to tell you.<br />
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Without giving you the particulars, as mudslinging will accomplish nothing, we fought to establish a special needs program at the church we were attending back when Elise was moving up to elementary school. For the first couple years, we tried to fix things to make it easier for Elise, then we decided that we should be advocating for everyone in our situation. So, in 2011, over the period of a year, we tried. We wrote up a proposal, we sought resources, we gathered support. And the church kept putting up roadblocks: liability, man power, and myriad reasonable excuses. And at the same time, the then current organization for Elise's individual support stagnated. <br />
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We finally concluded that we were unwanted. And even if we "won" and established a program, there would be nothing gained if we were a millstone and not a goal or passion.<br />
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We spent the next year, going from church to church, looking for an established program. Because we were so emotionally battered, we were too exhausted to try again. We found one that was nice, and we stayed for a while. Even driving our oldest back to our old church as he had bonds there. We discovered that the special needs program ended abruptly at middle school at the church we had been attending, and so we again sought a new church home.<br />
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We have been attending our current church for several years. And from the first day, they adamantly stated that they wanted us there and that they would find someone for her so she could have a friend meeting her needs and so we could find peace in attending church by ourselves. I certainly cried over their response to us. As the years have moved, they have sought to better their program as best as they could. <br />
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Recently we were contacted, by the leadership, along with other parents and therapists and special education teachers. They shared their goals and asked us what OUR ultimate goals, needs, and desires were. They are actively planning and seeking to make their program the most supportive they can, for the most needs as they can, and growing it. They even ultimately want to market their program to the local special needs community and look for new families.<br />
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First of all: I have never had Elise sought after. If we don't come, we even get called to see if she is okay. Second: They have calendar dates for their plan. Third: I have never, EVER heard of a church begging for more.<br />
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And so, I cannot tell you what a balm that was to my soul. That my girl was a passion and not just rising to a need... I am sad to say, that isn't always the norm. I hope that others with similar needs have not had the path that we have. But I am here to say that even if you have walked the same path, don't give up looking, because just when you question your plodding, you will round the crest of the hill and have a glimpse of a city of light. <em> </em><br />
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<em>And it is beautiful</em>.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com4tag:blogger.com,1999:blog-6613098443917855826.post-39413632367610906872016-05-03T11:37:00.002-07:002016-05-03T11:37:59.501-07:00May Day, Mayday, and SuchThings are moving. Because, that is life and stuff. We are (hopefully) through "Sick Season". The very last of it has been vicious. Like it resulted in making changes in life and plans.<br />
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We went on a Disney cruise for Spring Break. It was kind of because it was our last secure Hoorah, with Gabriel graduating this May. Perhaps he will be back...perhaps he will be trying out adulthood...who knows? But it was also because we have limited options with Elise. With her hurting and being unable to walk much, we either have to use a wheelchair or we have to find vacations that don't count on walking...at all, if possible. If we use a wheelchair, she doesn't want to get out afterwards...usually at all...which leads to all manner of other things.<br />
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The one fun thing that gave a significant amount of hope that came out of the cruise was a tandem kayak rental. It seems that Elise adores boats. Of all kinds. She wants to kayak alone, but is about as safe doing that alone as driving a car. So, I have been pursuing options. The fun thing to discover, is that she will happily ride and paddle a tandem. She only almost beaned me in the head with a paddle a couple of times. And was actually helpful moving the boat forward. If she was without a paddle, she whined that she wanted one, but I could manoever us quite well alone. SO. It gave me hope that my fun place can actually be enjoyed by her for as long as she ends up being with me. We can go together. And she will enjoy it. PLUS it is cheater exercise. It actually is, in the meanwhile it is fun...and she sleeps hard after!<br />
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<br />
Speaking of unexplainable pain: <br />
<br />
We are now seeing a pediatric rheumatologist. So far, I have been blown off by her and her nurses. And disrespected by her blood work staff. We got no real answers from the blood work and the x-rays. And the only thing it secured us, was a recommendation for Vitamin D (significant deficiency) and an Aleve. We have an MRI scheduled for this Friday. I admit, that I am not holding out much hope. I figure that they will find nothing after a morning of NPO. NPO is pretty much a recipe for a day of disaster. NPO is medical shorthand for no food by mouth...for x amount of time. After which time they will sedate her and she will wake hungry, with a headache, and usually nauseated. Which is super fun.<br />
<br />
I would appreciate prayers for sanity and at least direction, if not answers, from the MRI.<br />
<br />
While I am requesting prayers, I am really, really worried about how Elise will handle Gabriel's graduation and going to college. I am already dreading it for me. Losing my evening buddy will be hard. BUT Elise gets weepy and weird just thinking about this. She is already anticipating and was worried that he had moved out last week when he had only gone on a band competition trip. He is one of her Most Important People and that transition is going to be huge.<br />
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I am currently trying to figure out how to sort meeting her social needs. She needs friends to hang with. Like *NEEDS*. Not just at school. So if you are a friend, you can expect phone calls this summer. And we will limp through this whole teenager thing together. And hopefully if I can iron that out, it will make this fall less hard.</div>
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Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-33292417673122128242016-03-02T20:00:00.000-08:002016-03-02T20:13:21.423-08:00Why Should You End The Word: The Historical PictureI typically post the End the Word Day post on 3/21, as it is National Down Syndrome Day. Today, I have a bigger post, my brain took off and got grandiose.<br />
<br />
Last year, I decided that the heart of the disparaging use of the word "Retarded" was less the word choice. (You know, find an unoffensive word to call someone...there are many synonyms and all that.) And I boiled it down to this:<br />
<br />
<a href="http://superdownsy.blogspot.com/2015/03/brass-tacks-on-end-word.html">"If you can't use the "R" word, why do you need another word to cut and hurt? Why do you need to find another disparaging word? Why can't you walk away? Why can't you use nice words with your friends? Why do you need to tear your own worth down because of a silly mistake?</a><br />
<br />
<a href="http://superdownsy.blogspot.com/2015/03/brass-tacks-on-end-word.html">Look for the good. Understand choices come from others' pasts. Understand that you are human, and move forward.</a><br />
<br />
<a href="http://superdownsy.blogspot.com/2015/03/brass-tacks-on-end-word.html">If you can't say something nice, DON'T SAY ANYTHING AT ALL."</a><br />
<br />
I believe the most "popular war" was that of World War II. It was possibly the only war in the history of time that had a clear cut bad guy doing bad things that was clearly defeated. There are BUCKETS of documentaries on it, movies, and books on it, because of that fact.<br />
<br />
The WWII concentration camps were used to confine "dangerous" political adversaries first. Hitler was doing it to protect those in power, and the superior groups under the guise of protecting the country from groups who would damage their country.<br />
<br />
Then, they decided to weed out the sick to strengthen the general population and keep them "safe". There were euthanasia plans, panels, and those who carried them out. Then there were horrific experiments performed on them.<br />
<br />
And all of these things were allowed by the rest of the population. No one said anything. Because it didn't apply to them. <br />
<br />
It was a slow devaluation of certain lives...that quietly expanded...in both the groups targeted and the violence that was heaped onto the groups in isolation. The sick became the physically disabled, the mentally disabled, the Romany, the Jews...anyone without voices...anyone without support...even those who would protect and support those that were having these despicable acts done to them.<br />
<br />
The most horrifying dart of information that I got as a parent of a child with disabilities was the knowledge that the first group of people to be categorized, tortured, and murdered in the death camps were people with disabilities. They were first line. They are the unmourned of World War II.<br />
<br />
If the entire population had banded together and said "NO. No one deserves this." at that first time, at the first wave, I don't think the camps could have gathered the momentum he did.<br />
<br />
Now. I am not conspiracy theorizing here. I am not saying that we are prepping for the next crazed tyrant. I am really not. I am saying that this level of disrespect of others is the beginning of that first wave.<br />
<br />
And I ask you to ask yourself, what is that first ripple of that first wave? Believing yourself to be better than your neighbor. To scorn your brother. To believe you must be superior to be valued. <br />
<br />
You are nothing without compassion. You are nothing without love. You are nothing without your brother.<br />
<br />
End the use of the word "retarded". End the belief that living life more slowly is bad. End believing that you must be superior from your neighbor to have worth. Love those that show life is a full spectrum of abilities and histories. Be the voices for those who have none by LISTENING TO THEM. Learn the beauties of life that they offer. Feel the struggles and triumphs that they have experienced. Learn and grow and love. You will be the better for it.<br />
<br />
And in these political days, I highly suggest that you look for that respect in your next president, as well.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-39685453506095814682016-02-05T18:27:00.000-08:002016-02-13T07:16:46.689-08:00Itty Bitty Living SpaceToday I went on a bit of a rant on Facebook. I'd like the chance to explain myself a little bit. Give some perspective.<br />
<br />
My Facebook post:<br />
"I don't particularly love having to pick up my kid in the handicapped pick up in the back parking lot because it means my kid is not ABLE to sit like yours and wait without being unsafe. But I do know that when I was forced to pick up in the regular carline, I got hands flailed at me, cussed at, and flipped off for taking so long.<br />
<br />
Imagine my irritation at getting flipped off, cussed, and flailed at for trying to save you time by picking my kid up in the handicapped area. <br />
<br />
DON'T be a TURD. Or I'll take pleasure at gumming up carline.<br />
<br />
You'll mess only your own nest."<br />
<br />
I get the big arm flail...you know the one...the one that asks WHAT ARE YOU DOING? with exasperation...about once a day in carline. I get flipped off about once a week. Today was a first time event this year, where not one, but two cars cut me off and blocked me from going down the other lane to avoid the carline, so I could go around back to get Elise. I am not sure what they thought they were proving by doing this, especially as the principal goes around back and makes sure you are supposed to be there if there is too much traffic in the back.<br />
<br />
Here's the thing. I don't feel that IT'S MY RIGHT to get special treatment. I prefer for my child to get help to remain safe and for us to be able to take our time without duress at every transition. Especially as it is truly her body (and sometimes mind) that requires more time to plan movements as she gets in and out of the car. But I don't WANT to block everyone else as my life moves in slow motion. My life always moves in some kind of time subset from everyone else, I am used to it. I cannot plan what will make a day go sideways, though, and if that happens, it's going to get weird fast. <br />
<br />
As a matter of fact, a friend posted up a comedian talking about his son with autism. He said something along the lines that he never knew<a href="http://www.cc.com/video-clips/e26ud1/john-oliver-s-new-york-stand-up-show-raising-a-child-with-autism"> "how to describe taking care of a child with autism.... But during a festival, it all became very clear. It's like taking care of your very best friend, after they have done waaaay too many shrooms. While you yourself are on a moderate amount of shrooms.</a>"<br />
<br />
Now, Elise has not been diagnosed with autism, but she does have a lot of personal similarities. And I have, on more than one occasion, likened my life to Alice in Wonderland. Things get keep getting weirder and weirder...and you know it's weird, but everyone that you are dealing with makes YOU feel like you are the weird one in the situation. You are forced to change yourself and your expectations so many times, that you find yourself just as crazy as everything else appeared to be. (And, for the record, I also said, all through high school and college that I absolutely thought Lewis Carroll wrote it while high. You know the drill, right? He thought he was being suuuper deep, and was smart enough that he managed to tie all the crazy to actual happenstance, political or otherwise, but it was still completely wacked out. Yuh. That. You've all seen that guy once, right??)<br />
<br />
EEEEnyways, back to my story, I am truly doing you a favor not to tie you into my brand of crazy. So if you don't have a child with special needs, you may think that I am getting these absurd special privileges. But let me explain this to you in a nice, tidy little nutshell. <br />
<br />
You know the scene in Aladdin where he tricks Jafar into wishing to become a genie? Because Genie explained to him the paradox? (<a href="https://youtu.be/SfTfXLLJlzM">https://youtu.be/SfTfXLLJlzM</a>)<br />
<br />
Well, the allowances may appear to be <br />
"Phenomenal cosmic powers!!!!"<br />
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But to us, as special needs parents, it's really just allowance to get tied up into our <br />
"Itty Bitty Living Space", where our child feels and IS safe.<br />
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So, do us a favor, and be patient. Please assume that things are more complicated than they appear on the surface, because they usually are.<br />
<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com3tag:blogger.com,1999:blog-6613098443917855826.post-59569912471261708342015-12-16T15:04:00.000-08:002015-12-16T15:04:27.621-08:00Open Letter to My Daughter's Support SystemTis the season where you shop for your family and your kids' friends and your kids' teachers....and so on and so forth.<br />
<br />
I will, without a doubt, post again about the holidays, but today's shout goes out to the host of people that brings me zipped coats and intelligible words.<br />
<br />
I have to buy gifts for the people who I live with. I have to buy for family members who are hard to buy for. I have to buy for people who expect presents, but are not happy with anything. I get to buy for people who are easy, and I get to buy for people who are excited for anything...but those are mixed in with obligation gifts. And just because someone is easy or hard to buy for, in no way illustrates who I love deeply...<br />
<br />
The list of people that I LOVE to buy for is short. <br />
<br />
The list of people that I would LOVE to buy for is ridiculously long.<br />
<br />
And every year I am faced with squeezing the budget for that last category. <br />
<br />
But I want to take this moment to say to my daughter's teachers, aides, and therapists:<br />
<br />
I wish I could buy each and every one of you a loaded gift card for Target or Staples, a trip to the spa for a massage, luxurious goodies, and a trip to Hawaii.<br />
<br />
The work that you put in over YEARS of fighting for the same thing for my kid, is not unnoticed. That we have been working and crying together for tied shoes and zipped coats and clearly written alphabet and spoken pronouns for 10 years...well, we are sisters and brothers-in-arms. You know better even than most of my family how HARD it's been crawling up canyon walls to get to heinously behind, wrestling our way up from static and stalled.<br />
<br />
You have been the backbone to Elise's scholastic achievement and her social successes. I don't lay down on the job, but I also know I can't do it alone. I know some tricks, but you know many more, and are continuously learning for MY KID. You learn the hard way how 6-50 kids react in stressful situations. You take even physical abuse protecting my child from herself. You go home every night, trying to figure out what else MIGHT work for 10 kids...and you make mine feel like she is your most beloved. You reach out to me when I cry at IEP meetings, crying with me and offering me comfort.<br />
<br />
If I sat on Santa's lap right now, I would wish that every single time you opened your desk drawer, you would discover just exactly what you needed.<br />
<br />
I will have to content myself with gifts that actually depress me to give you....in desperation that you feel how much I value you.<br />
<br />
Because this year for Christmas, you gave me a kid who could talk on the phone with me and make sense, and, despite warning me that she may never be able to zip her own jacket zippers two years ago, she has done so, BY HERSELF this month, for the first time. I have gotten more weepy about that than my son applying to colleges (shhhh, don't tell him).<br />
<br />
Thank you. You are the very best sort of elves. You work magic with my girl and you do it with creativity and the most amazing ethic. And, frankly, you don't get paid nearly enough for all the magic beans you plant in our lives.<br />
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Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-61510141487545524462015-10-15T10:21:00.001-07:002015-10-15T18:35:40.803-07:00Trouble Shooting PubertyThis particular post will be a little vague to protect Elise from embarrassment in the future, but I felt like the general specifics needed to be shared due to some surprised exclamations I received lately when spontaneously discussing it naturally with other parents of kids with varying disabilities.<br />
<br />
Puberty is a giant war against crazy. Seriously. Add incomprehension and sensory issues in the pot and PTSD is unavoidable. Truly, and NOT being disrespectful to veterans.<br />
<br />
My personality default is to trouble shoot. To the detriment of friendships at times...and to the redemption of relationships sometimes...go figure. Parenting is a humongous exercise in trouble shooting and sometimes getting it right and sometimes getting it wrong, and a WHOLE lot of prayer.<br />
<br />
Puberty was weird enough my first go round, with a typical son. When faced with my darkest fear, a GIRL...well...I did what I always do...I made lists in my head of how I would handle things. Then revamped them...over and over and over...ad nauseam.<br />
<br />
When it became clear that Elise was going to go into it with a lowered mental age, limited communication, and raging sensory issues, I decided that I was going to handle it with as little stress as possible. To do that, I decided that nothing could start as a time duress situation. I was going to have to ease into everything slowly and WAAAAAAAY early, so I didn't happen into any surprises without wiggle room.<br />
<br />
So, when she got all <a href="http://superdownsy.blogspot.com/2013/11/tmi-and-shaving.html">flippy dippy about her leg hairs in her leggings</a> a couple of years ago, I started shaving her legs about once a week to week and a half, with a Schick Intuition. No risk to cut herself, no shaving cream sensory gags (which I tried about 3 weeks ago, and she fell completely apart), and no pressure. It was all on her terms. Now that it is obvious when she needs to, its already an established routine and it's not a big deal to up the frequency a bit.<br />
<br />
I handled the bra transition the same way. I started letting her wear my exercise bras and the super stretchy sleep bras for fun. Then I had her wear them to school once or twice a week, and then everyday. And, again, now that it is no longer negotiable for modesty, she loves them and they are an established routine.<br />
<br />
Deodorant, even. I offered it to her when she was watching me get ready a few times, and she giggled and gagged. Then I started asking her to put it on after a bath about once a week. We are up to every bath, now, and she rarely needs it...but it is already established, with a scent that she loves, and we are poised, ready as soon as it becomes a daily non-negotiable.<br />
<br />
Elise will be 13 at the end of this month and the most stereotypical aspect of puberty is looming, her period. <a href="http://superdownsy.blogspot.com/2014/08/bizarre-blessing.html">I mentioned how thankful I was for Willow</a> being in heat for taking away the panic at its discovery last year. It will be any time now, so I have also been very proactive in trouble shooting for that rather huge adjustment. I have fully anticipated that she will not handle it well, so I wrote into her IEP last year that when she starts, she will stay home that week. My stance on that is "I don't hate anyone enough to make them deal with that." <br />
<br />
I have been trying to figure out how I was going to mediate that week for about a year. Pads are dodgey and hot and bunchy for a person with typical sensory thresholds...and trying to face that with someone who loses her mind at seams in her socks and still gags watching anyone put on chapstick...well,it is daunting at best. So, I have been trying to sort my way around that for quite some time. I decided one day at the grocery that Poise incontinence unders would be a stellar option. Nothing independently problematic. TA-DA. Except that they are hot and big. Oh, well. And then I got a advertisement in my Facebook feed thanks to my natural food "Like"s for <a href="http://www.shethinx.com/">THINX underwear</a>. But as lovely an idea as they are, they don't make the kind of unders Elise prefers AND they cost a FORTUNE. And a few months later, I accidentally bumped into cloth menstrual pads. They can be made in any length, shape, or fabric. I messaged a very lovely lady on Etsy with ALL of my questions. And not only did<a href="https://www.etsy.com/shop/MotherMoonPads"> Denelle</a> answer them, she sent a couple of pads for Elise to try and use to decide on her favorite fabrics. Elise LOVES them, unlike the disposable one I made her try as well...which she gagged and retched and whined about. And so, I have a nice little stash of pads that she wears around the house periodically...and which she brags about to her sisters who are now desperately jealous. I can confidently say that we got all the transition of technical crazy out of the way, and we can deal with the normal, hormonal crazy head on. While you may not be as comfortable as me, since I opted to cloth diaper my two youngest...I just share this because I know that most people don't realize there are other options out there...And I know how loathe I was to realize that I wasn't going to get out of this transition, and so I needed to act in a manner that would make it all easier on all of us.<br />
<br />
If you have any questions on any of this, as usual, feel free to message me or email me, and I will answer anything that I can.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com3tag:blogger.com,1999:blog-6613098443917855826.post-22544569062860329452015-10-15T09:21:00.001-07:002015-10-15T18:37:36.427-07:00The time I called a doctor out and did him a favor.I've corrected people on more positive language toward people with disabilities. I've kept my mouth shut on a few occasions so I wouldn't end up needing bail. I've wished I said something when I didn't...aaaand I've wished I'd kept silent when I didn't.<br />
<br />
Over all, I try to listen to people's hearts and respond in a manner equal to what I think they are going to hear. Abusing someone will not change hearts or encourage friendships.<br />
<br />
I know that doctors are most under scrutiny by parents of kids with disabilities. Which, to some degree I agree with, as they have access to the most forward information of successes. But in another, I feel like their very profession encourages grouping needs under headings. When they see a child with a single disability, they see the flow chart that comes from that definition. When you see a child, you should see the child first, and the disability only as an outflowing of how you will need to alter or at least understand any changes to your communication and relationship. When you go to the doctor, you WANT them to see the impact and consequences of that defining diagnosis...<br />
<br />
However, I've seen doctors that have been crucified for the off the cuff remark, "Most Downs kids"...They have been black balled by entire communities and warned off by EVERYONE.<br />
<br />
Person First Language, simply asks that you use semantics to underscore a person's individual value without any diagnosis. For example: Elise is a girl. Elise is a girl with Down syndrome. Elise is not Downs. She is not That Downs girl. Do you see? Do you feel the value and respect difference?<br />
<br />
Summary: Elise, as I have said, is having some originating problem that is damaging her. She is completely exhausted...sleeping to excess and struggling to cope with life as a consequence. My first address came at the pediatrician, to make sure I wasn't missing a virus or infection or allergy. Second, I requested a blood draw, a CBC with differentials, and a thyroid panel...to rule out cancer relapse or her thyroid crashing because of puberty and hormones. This week we went to the cardiologist to rule out heart damage from the chemo or some kind of damage/tearing due to her congenital heart defects that were repaired at 3.5 months. So far, we have no answers. Frankly, this is good, because other than a virus or thyroid, the responses would have been gargantuan and dangerous. I am still treating her asthma, and we have an appointment in a few weeks.<br />
<br />
ANYWAY, at the cardiology appointment, we got a doctor doing his cardiology fellowship. He looked about 15, with the long, foofy, Bieber hair, and freckles. The words "darling baby boy" should not come to mind when you are at the specialist for your child's medical conundrum...yeah. But he heard my concerns and discussed with me back and forth like I was a peer. (This is lovely, not all cardiologists have this kind of respectful manner!) Some of his advice was put on the back burner, but some was put into my current medical pot to stir about. At one point, he stumbled onto the generalization, "Many Downs kids". At the time, we had already established a positive back and forth. He had already been respectful to me, to Elise and her history, and given genuine input to the questions we are dealing with. I heard it as it was meant. I heard his compassionate heart, his knowledgeability of our situation, and his insight into possibilities.<br />
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After I got home, I realized that keeping silent had done HIM a disservice. He is in training for a specialty that will be involved with a high number of kids with disabilities. By letting that slide, I was putting him up on the chopping block for his heart and knowledge not to be heard by not using person-first language. So I called the office back, and asked how I should get into contact with him over a concern. Through a long chain, I ended up sharing this information with what felt like half of the office...and eventually he, himself called me back. And I got to share with him my regret at not saying anything. That I was not calling for me or my child, but that I was appreciating HIS specialty and learning process, by sharing with him MY specialty. And he responded like a champ. He heard me, defended his ignorance with what he MEANT to say, and graciously accepted the criticism AND education. I am confident that he will be more conscientious in the future, and I hope he will tell his fellowship peers and anyone who trains under him in the future. I am also rather grateful that I was late in my response, as I inadvertently educated about 4-5 other people in that office as well.<br />
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Step outside of your world and your comfort zone with confidence in your own unique skill set, and you will witness the changes.<br />
<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com2tag:blogger.com,1999:blog-6613098443917855826.post-44448505269449969252015-10-05T08:32:00.001-07:002015-10-05T08:32:23.353-07:00Air<div class="hLozenge">
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For those curious, Elise has had a genuine struggle adjusting to middle school. I love her teacher, and she loves her teacher, so that portion is lovely. She is the kind of teacher who knows what to push and how far to go with things...and when to stop and let things go. </div>
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However, since about 2 weeks before school, she has been excruciatingly tired. She will struggle to wake, beg to go to bed early, nap during the day, and have an unusually high number of meltdowns.</div>
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Some are legit, tween tantrums, some she has no control over. And those are what worry me.</div>
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When she started school, there was the usual testing period. And then she got a new parapro, and that lady needed her testing time...but I was still dragging her to school and she'd sleep all the way home and then some. She also decided to throw in copious weeping, periodically...with no standard explanation. </div>
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And then I found out not only was she napping 1-2 hours in the car, but she was sleeping at school 1-3 hours...on top of begging to go to bed and sleeping in.</div>
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So, I did what every good cancer survivor parent does, I panicked and had all her blood panels drawn. They came back all normal. Even her thyroid, which is honestly had been what I hoped was screwy, because it would explain the exhaustion and the emotional dippiness.</div>
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I hate getting no answers...so I decided to mull things over a bit and see which other direction to strike out into. </div>
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We went to a friend's birthday party this weekend and besides being great fun, it turned out to be a very educational party!</div>
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Elise ran around and danced and got blue around the mouth. I suddenly have a new direction to start in. It would explain why she's so tired. She has a history of bronchial asthma, and it can be fairly invisible, unless you are watching pulse ox or she develops croup and goes into distress. It even explains the emotional volatility, I know I am always more irrational when exhausted!</div>
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Sadly, we can't get in until November 6, but we have rescue medicines until that point. I'll keep you posted.</div>
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Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-39576381188177320692015-10-05T07:48:00.000-07:002015-10-05T08:44:17.856-07:00Snake Oils and Essential OilsI have been using essential oils for a while now...As in, I got desperate with Charlotte never sleeping and flipping out and being unable to self-soothe...back about 3-4 years ago.<br />
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I have slowly upgraded to better quality oils. I have done my homework on safe practices and what I shouldn't use on little kids. I have read up on which ones are effective, and which ones just smell wonderful.<br />
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I would encourage you to do likewise, because just taking someone's word on extremism can be unwise.<br />
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I am a big fan of medicine. I am a big fan of being aware that eating habits and exercise affect your health. I am a big fan of essential oils. I am also a big fan of using them all to make you healthy and balanced in life.<br />
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As I said, I got involved with essential oils when Charlotte would not sleep. I got some marginal lavender oil and mixed it with water and HOSED her room down with it. She because much more relaxed and rested willingly. At the time, I didn't know or care if she just liked how it smelled, so she smelled more deeply, allowing her body to wind down to sleep or if it chemically affected her.<br />
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She was hyper sensitive to all smells and chemicals so this made sense. If certain ones could turn her into a crazy woman in 2.3 seconds then it stood to reason that other external stimuli could smoothe out the nuttiness.<br />
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Over the last 3 years, I started reading up on oils. Which could soothe, which could help kill germs in the air, which could freshen. Eventually, I was looking more deeply. Which could be used as antiseptic, which could help you concentrate, which could help you sleep more deeply.<br />
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About 6 months ago, I got a kit of oils and a diffuser from Young Living. I am a terrible seller, because I can justify so many options. I bought in mostly because I think some oils are worth the pyramid price because of the commitment to purity and the documentation, also with the kit, I basically got a diffuser for free. Some I think are worthy of a lesser price tag that are sold from other quality options. Some I like the mixture/ratios better in Young Living, some I prefer other brands. I bought the kit because it had one of the more expensive oils that I wanted plus a diffuser, plus a bunch of other oils to try for basically free...and I knew I'd never try them if I had to order them separately. I currently have <a href="http://www.youngliving.com/en_US">Young Living</a>, <a href="http://www.doterra.com/#/en">DoTerra</a>,<a href="http://www.planttherapy.com/"> Plant Therapy</a>, and <a href="http://www.nativeamericannutritionals.com/">Native American Nutritionals</a>. My favorites are Young Living and Native American Nutritionals. I have found them effective to mediate many different issues. They have helped Charlotte and Elise improve their coping and emotional feelings. They have helped us fight off several viruses and they have helped us shorten the duration of several. They have helped my girls rest more deeply. They are helping mediate some of my ADHD symptoms. They have helped with several of my migraine symptoms. They smell wonderful. <br />
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My husband is still skeptical, which is fine, it's his right. He has said that it's all in my head...but as some of my struggles are in my head (stress, attention, migraines) then them helping in my head I figure is still a good thing. However, he did get to witness Charlotte have a full on meltdown over spring break and the oils brought her back to sanity, such that they have received a certain measure of credence.<br />
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More importantly, they help Elise and Charlotte calm down...which, when you can barely get from place to place for them having an emotional breakdown, this is more valuable than diamonds. <br />
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Just like medicine varies in dosage per person and gives different side effects and magnitude of those side effects because of personal chemistry, the oils are also differently effective on each person. Elise is not impacted significantly by the oils I use for attention, but one of the calming blends is her personal silver bullet. Amelia is very much calmed by some combinations. Charlotte takes almost no strength to see huge changes in behavior.<br />
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If you are already a fan, I have one other thing to share...As I am carrying some of these oils around, I need a way to protect them and keep them somewhat organized. I have been known to take them out to let a friend sniff them in a Tinkerbell lunchbox. Which I find entertaining in a juxtaposition of wildly printed plastic and alternative natural therapies...<br />
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A friend of mine makes bags. While I know her to be a very quality seamstress, and I would have recommended her products simply on her consistency, she gave me a couple in a fun group swap, and I was shocked at the room in them. I could get ridiculous numbers of rollers and oils in them! <a href="https://www.etsy.com/shop/glowfromtheinside?ref=shop_sugg">GlowFromTheInside</a> sells fun bags in prints for everyone and in a ton of different sizes, for storage or for grabbing them to keep everybody sane. And, of course, they can keep anything in them, like pencils, crayons, make up, jewelry, rocks, or toys...which is why I always like bags!! <br />
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If you have any fabric *NEEDS*, do message her, and she will find you something of your taste. <br />
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If you have any oil questions, don't hesitate to message me on this blog's Facebook or email me...and I will happily get you the info you like.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-25299586788291799172015-10-02T08:59:00.002-07:002015-10-03T05:16:47.618-07:00Ribbons and Whatnot<div class="separator" style="clear: both; text-align: justify;">
<em>I have obviously taken a very long vacation from posting. As a short explanation, my husband decided to run for a local political seat earlier this year. I locked up my personal Facebook page, the blog's Facebook page, and my blogs so there would be nothing that I said carelessly...like a human...that could be used against him. He ran a very positive and honest campaign, which makes me very proud, but that did not stop others from choosing to do otherwise. So I am exceedingly glad I took those precautions. He was not chosen, but I had such a horrible taste in my mouth from the attacks, I literally had panic attacks when I thought about unlocking my security. </em></div>
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<em>I have still opted to keep some security on the comments...forgive the flippancy...but "It's me, not you."</em></div>
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I<strong> spent 75% of my Childhood Cancer Awareness month worried for the health of someone I love...and wondering if I had breast cancer.</strong> So I was not really in the mindset you have to be to revisit cancer.</div>
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I will be 40 in November, so I did my duty, spurred by several friends who are breast cancer survivors, and had my first mammogram. Because I have had several bouts of mastitis while breastfeeding each of my kids, I fully expected dodgy mammogram results. So I paid extra to have the 3D mammogram. However, instead of the quick results they promised me, they didn't call me for almost a week and a half. There are some results that "no news is good news"...stuff like this is less so, because it means it wasn't a quickie overview...so when I was called and told that I needed an ultrasound, I was already a smidge stressed. However, I wasn't <em>really</em> worried, because I figured that they had found scar tissue from the infections. I kind of blew it off. But the nurse kept stressing that it wasn't "That kind of call back. It's the kind that is no longer a diagnostic call back." to the point that I was genuinely strung out by the time I had the ultrasound scheduled.</div>
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And then, yesterday, I was informed that the spot was a cyst that was "The wrong color on the ultrasound." And that I needed to have an aspiration/needle biopsy. </div>
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I typically have a "DON'T Google the symptoms." stance on things because you always have a tumor by the time you read all the hyperlink options. But in this case, the nurses had gone to so much trouble to tell me how atypical this was, that I figured that the odds were bad. Ironically, when I finally got the guts up to Google it, because, really, what's a worse WebMD outcome than cancer? There were way more assurances that these come up cancer proportionately less...which led me to really question "Why all the medical cautioning?" Which only left me nauseated.</div>
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This morning at about 8:00, they emptied the cyst, and it was benign and that there was no need for pathology. So I am left with a hefty hospital bill, but a release to normal life...which looks way sparkley and brighter today.</div>
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BUT as I looked over at my friends who have fought this beast, because I wondered if I would join yet another club in the Awareness Month, I was struck at how the white washing of breast cancer is mainstream just like the glossing of childhood cancers.</div>
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And it really makes me mad.</div>
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Breast cancer awareness is not all pinks and cakes and 5Ks with balloons. It's ugly, it's vicious, it's destructive to family life, general health, and it has long term impacts. I know several survivors that have beat it, only to have it loop back and attack another system. I hear all the funny games of what color bras you are wearing to bring "awareness", but it's not kosher to point out that even those who have survived and have something to put in their bras and had reconstructive surgeries have aggressive scarring and permanent damage and suffer long term effects.</div>
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It's not about the boobies, People, it's about saving lives.</div>
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Childhood cancer awareness is also not all about the beautiful, shiny bald heads on the St. Jude commercials. It's not the beautifully written books/movies of Nicholas Sparks or John Green. </div>
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It's about kids who have DIED. Or those who have survived with long term losses, brain damage, and lost childhoods. It is an ugly monster that steals what you take for granted. It steals things that you simply don't "<em>deserve</em> because we live in the world we live in". It destroys things that are hauntingly beautiful. Things as basic as your family being together. It steals futures.</div>
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Childhood Cancer Awareness Month is always a kick in the teeth to know how resilient kids are, how their bodies fight like wild animals against cancer, but that the funding for new treatments for a cure is virtually non-existent. It's about 4% of the cancer research allotment, and it stands to do far more good and offer more saved futures as a unit. </div>
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For me, it doesn't matter how long it's been since Elise was on treatment. I feel its impact regularly, but I don't despair in what was ravaged, I treasure that she was given a future. And the kids that are still fighting don't stop when September is over. If you ever want to pass on an over-priced coffee, there are lovely organizations that would love your dollars to make a difference for kids and their families. Even if you missed the publicly prettied-up window.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmYx1iNPhYq53w-QOnfO9xU0NAaynE1ZHSjE7UTqQI049Ovg3A9yFOPTay3LFG6TNFoKPmtq4mKhrMfTy_7Rfel3L1r6ZqNb3NH-w527SjUIvHRwAEvSuIRCngbsVwvxoiBQSSz92HlOY/s1600/gray-ribbon.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmYx1iNPhYq53w-QOnfO9xU0NAaynE1ZHSjE7UTqQI049Ovg3A9yFOPTay3LFG6TNFoKPmtq4mKhrMfTy_7Rfel3L1r6ZqNb3NH-w527SjUIvHRwAEvSuIRCngbsVwvxoiBQSSz92HlOY/s320/gray-ribbon.gif" width="206" /></a></div>
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I am posting 31 for 21 posts for Down syndrome this year on my personal Facebook page and this blog's Facebook page: <a href="https://www.facebook.com/Just-a-Little-Muchier-Muchness-146239852081726/timeline/">https://www.facebook.com/Just-a-Little-Muchier-Muchness-146239852081726/timeline/</a>. At the end of the month, I'll collect them all up and post them in a single post on here. So do like us and follow to check and see what hits me as important to share this month...I am always just as surprised as you.</div>
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P.s. It's good to be back, I've missed our little chats.</div>
Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-69765367329212532015-09-09T16:16:00.000-07:002015-09-09T16:16:41.894-07:00HopeHope tends to be either overused or underused in the special needs world. <br />
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Either you are failing your child in some manner or another for "not believing hard enough" or you are not "taking advantage of available therapies".<br />
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OR you are a "pie-in-the-sky parent who doesn't see the reality of your child's current status".<br />
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I've been accused of both...and more. Sometimes in the same conversation or IEP meeting. So, go figure...<br />
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Once upon a time...several years ago, Elise and Gabriel (4 years older) were on my parents' sailboat in a bit of a gale. Such that Gabriel, who has always been a bit of a boat baby, hunkered down in the cabin, praying that they wouldn't capsize and die. The bizarre part, what that Elise who had always been a bit of the Safety Police, and was over-aware of every jiggle of the boat, was up on deck, hand-over-hand tightening the jib lines, her face to the wind, grinning.<br />
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It was such an odd reaction for the both of them that it was added to family lore. And sailing was not the battle to get Elise from the dock to the boat from that point on.<br />
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This weekend, we went to a friend's house on the lake. And Elise did her usual screech every time the dock moved more than she liked. But she remembered riding on their motor boat, so she ensconced herself on the back of it so they couldn't take it out without taking her. She eventually got the guts up to get herself moved over to an inner-tube, and then squawked while I tried to get her turned around so it wouldn't dump her out at every movement of the water. All this time, she has been observing everyone out playing on kayaks. There was one adult one that was a tandem, and two little singletons for kids. She decided eventually that the tandem had to be tried. So, with some significant effort, we got her on with her brother. She thought this was so excellent that she needed to try a kid-sized one after she got back. There were a LOT more panic-y moments getting her situated on that, but when she finally got on, she was so pleased that she actually spent the time figuring out how to work the paddle.<br />
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By the time came for her to ride on the motor-boat, she had figured out how to manage it amazingly well...only needing help with turns. And she thanked me, and the spare dad she had borrowed, profusely for letting her play on the "Gak boat". And now she pleads to go again periodically.<br />
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This is epic. <br />
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I love to kayak. I am in the process of getting one of my own. I have been out with a friend a bunch of times. But when I had this in my head, I saw this as never being something Elise could actually participate in, if I could even talk her onto a boat. I was afraid that it included just way too much motor-planning. But this weekend has given me hope that she could actually participate...and bask in it as much as me...and it opened not only kayak possibility, but the possibility of things changing in her motor status...which has been rather stagnant and depressing for the last several years, to be honest...and not on my own, but the information I have been getting from many of her therapists.<br />
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Adventures are still ahead. And hope certainly is.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-76851808444961343942015-03-04T19:09:00.002-08:002015-03-04T19:09:59.793-08:00Brass Tacks on "End the Word"Today is the End the Word Day. <br />
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I have<a href="http://superdownsy.blogspot.com/2013/03/end-word-day.html"> talked</a> on this before. It is the campaign to ask people not to use the word "retarded"...<br />
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I am going to make this really simple. I've changed my mind since last year. I don't want you to find another word. I don't want you to use a synonym. I want you to consider your heart. <br />
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I have a friend who posted on how "<a href="http://www.meriahnichols.com/special-is-the-new-retard/">'Special' is the new 'Retard'</a>". About how now, people are indeed getting away from the "R" word, and using a variant. She concluded with "Respect Everyone".<br />
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And that really struck me as key to what I have been mulling.<br />
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If you can't use the "R" word, why do you need another word to cut and hurt? Why do you need to find another disparaging word? Why can't you walk away? Why can't you use nice words with your friends? Why do you need to tear your own worth down because of a silly mistake?<br />
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Look for the good. Understand choices come from others' pasts. Understand that you are human, and move forward.<br />
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If you can't say something nice, DON'T SAY ANYTHING AT ALLTiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-81030608665307417312015-01-19T08:16:00.000-08:002015-01-20T15:34:37.585-08:00The Queen's SpeechI haven't written a lot lately. Well, that's not true. I have several blog posts I just can't bring myself to push publish on. <br />
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I feel like my writing is linked to what we are fighting here. <br />
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Stuttering. Not just a couple of words, here, mind. Like it feels like everything. <br />
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(the link if you are on a mobile device: <a href="https://www.youtube.com/watch?v=qvWRf4_ydCw">https://www.youtube.com/watch?v=qvWRf4_ydCw</a>)</div>
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Unless she's angry and telling me off. The stuttering gets worse when she is tired and worn out. So even if she has an okay day at school, she is wiped when she comes home and I get it all. All night.<br />
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I get either the above or I get "turd," "no," or anything that she things might get a rise out of me. <br />
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Or she watches excruciatingly annoying YouTube variations of Frozen. You know what is way worse than Elsa? Elsa in Japanese. In anime.<br />
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(The link if you are on a mobile device: <a href="https://www.youtube.com/watch?v=BM1md3oYb8M">https://www.youtube.com/watch?v=BM1md3oYb8M</a>)</div>
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She is also dealing with a TON of sensory issues and tween attitude/hormone bursts. And some days it's hard to tell if she can help the fit or she can't. <br />
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Is it the sensory overload, is it a bad attitude, is it struggles at school, is it social anxiety, is it frustration with her own inabilities, is it that she is completely hacked off by the stuttering tying her down?<br />
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I have always been super conscientious to not give her consequences for things she cannot help. But I have been equally conscientious to give her reasonable consequences to behaviors that are not acceptable in public or life, like all my other children. <br />
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This whole tween/teen stuff with non-verbal peeps is the pits. So much of it is feelings. And if you can't express it, all of it remains bottled and it all remains there, chaffing....eating...hurting...<br />
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Also, who you are as a person, not as a parent, but your own struggles and foibles, figures in in surprising ways to kick you in the teeth.<br />
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The best thing to do with people with stuttering issues is praising success and giving tools to personally work through the catches, and then to just sit back and allow them to work through it. If I wait her out and don't rush her, I get distracted by dust motes...my brain races off to my to do list, stories, and really random stuff...and I am fighting to stay tuned in, so I can understand her story, request, whatever. My inability to shut up my head....well, it's worrying me...and I'm seriously considering treating my own ADHD so I can reasonably deal with her stuttering. I have opted to treat it naturally with essential oils and coffee, but some days, it's just not enough.<br />
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So.<br />
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I am not telling you good news. I am not telling you hope for your future if you have a little. I am telling you of the battle we are waging today. A bad one. One that keeps looping back to get us. Stuttering and disfluencies have been a factor that we have thought we beat. Several times. And every time it comes back, it's more virulent, and, frankly, more depressing to deal with.<br />
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And <a href="http://en.wikipedia.org/wiki/Stuttering">stuttering</a> is, in some ways, a terrifying foe. You cannot communicate and in some ways you lose your child. You cannot wage a focused war. You want to bomb everything and start over, but you can't. You want to take your kid and flee, but you can't. You have to start with one thing and keep trying while you flail around in the cupboard of possible treatments. None of which promise anything.<br />
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And I find myself fighting the urge to jump around like <a href="https://www.youtube.com/watch?v=xJvGE7Vvd4M">"Bertie" in The King's Speech</a> when he discovered that he didn't stammer when he swore. Stammering is a "Beastly Bastard" that I find heavier than the Downs. Heavier than the sensory stuff. Heavier than even the impulses of the ADHD.<br />
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For somebody that didn't communicate any of my feelings for the better part of 30 years, I find the restriction particularly cloying and hard to deal with. And I cannot fathom how hard it is on Elise, for whom there have never been barriers that she couldn't overcome in some slippery manner.<br />
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And so I let her watch 4.33 minutes of movies over and over when she is home....And with so many scenes that she obsesses over being battles or triumph, I daresay she is feeling the oppression, too.<br />
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<object class="BLOGGER-youtube-video" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0" data-thumbnail-src="https://ytimg.googleusercontent.com/vi/-wX6_qCCnPc/0.jpg" height="266" width="320"><param name="movie" value="https://youtube.googleapis.com/v/-wX6_qCCnPc&source=uds" /><param name="bgcolor" value="#FFFFFF" /><param name="allowFullScreen" value="true" /><embed width="320" height="266" src="https://youtube.googleapis.com/v/-wX6_qCCnPc&source=uds" type="application/x-shockwave-flash" allowfullscreen="true"></embed></object></div>
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(The link if you are on a mobile device: <a href="https://www.youtube.com/watch?v=-wX6_qCCnPc">https://www.youtube.com/watch?v=-wX6_qCCnPc</a>) </div>
I've spoken of her love for Peter Pan <a href="http://superdownsy.blogspot.com/2013/04/to-live-is-awfully-big-adventure.html">before</a>. But, I will add, that just because you are a child, does not mean you don't have battles. <br />
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And so we fight. And sometimes, it takes strength to stand. So we continue to.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIU2-VwqpwTtGbNdcTFd0eK-hU3liGpK5Au5m93UgoWDRrvXd6NwU6F4WHXCCqtmQUW_sd4LaWFUTdpUk5SsROf0GSI7jt5Lv7ayK1__voK3dUCXokWmAuIud1zXKTRGasGshH8wpSKdo/s1600/peter+pan.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIU2-VwqpwTtGbNdcTFd0eK-hU3liGpK5Au5m93UgoWDRrvXd6NwU6F4WHXCCqtmQUW_sd4LaWFUTdpUk5SsROf0GSI7jt5Lv7ayK1__voK3dUCXokWmAuIud1zXKTRGasGshH8wpSKdo/s1600/peter+pan.jpg" /></a></div>
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(<a href="http://joseserrate.blogspot.com/">credit</a>)</div>
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We'll fly again, eventually.<br />
<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1tag:blogger.com,1999:blog-6613098443917855826.post-15249351631833347842014-10-03T14:43:00.000-07:002014-10-03T14:43:17.943-07:0031 for 21: Pizza Friday and PuppiesElise loves Pizza. Perhaps with a passion that most people cannot comprehend. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGYLJA20tlnAixJRXG8iQyVL3LwFiW2ZPDpWc5HUmmoMcloL0jmBiIxEpku0YLPSZdBdbxkrj7UMBPcLeCtzekup0dVMDV3N_yJVtPanmBecpegGp-XGHLRGyGJDMrFuF_0Aop2b2IcG4/s1600/pizza.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGYLJA20tlnAixJRXG8iQyVL3LwFiW2ZPDpWc5HUmmoMcloL0jmBiIxEpku0YLPSZdBdbxkrj7UMBPcLeCtzekup0dVMDV3N_yJVtPanmBecpegGp-XGHLRGyGJDMrFuF_0Aop2b2IcG4/s1600/pizza.jpg" /></a></div>
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She wants it for any celebration for the rest of forever. <br />
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Whenever I asked what people wanted to eat, it was always pizza. If the answer was "no", it was followed by massive weeping and huge depression.<br />
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About this time last year, I discovered that if there was anything Elise liked more, it was expectations. She loves a constant schedule. I think this is a primary reason she likes school. I am not a schedule person. It does not make me happy.<br />
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BUT I don't like constant sadness, either. So we implemented Pizza Friday. She had a constant expectation that she would indeed get pizza, without fail on Friday, but tonight is not Friday. She could make peace with that, Friday nights became no-brainers, and the rest of the kids thought this was marvelous.<br />
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It has encouraged us all to enable more routine, and it has made it our lives much nicer...I have even bought a planner. *gasp*<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuJLN5zlI-scBaPeCC1lSmmf7Msyw6Wb47Ifoh-HfSzUyr_U3Tj2V6DENMuM8k37qbKipxhuXKi69NIWM1Dd6cIvXV92d58OOzJOWEuyzDgfCBhmgsNMntUgxJ-mKBTIbjVIcy91goqI/s1600/planner.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMuJLN5zlI-scBaPeCC1lSmmf7Msyw6Wb47Ifoh-HfSzUyr_U3Tj2V6DENMuM8k37qbKipxhuXKi69NIWM1Dd6cIvXV92d58OOzJOWEuyzDgfCBhmgsNMntUgxJ-mKBTIbjVIcy91goqI/s1600/planner.png" /></a></div>
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Today, October the 3rd, 2014, marks another shocking milestone.</div>
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Today I was able to march into a regular store, with no list or angst, and purchase Elise's birthday presents. And I know, with no reservations, that she will love them. And play with them.</div>
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This may be a weird piece of information, but Elise doesn't really play with toys. She likes toys, but has very few that she interacts with and takes pleasure form. About once a year, she figures out some aspect of "play" and life improves drastically. </div>
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She is turning 12 at the end of this month, and what has she been pining for? A Nerf Crossbow. For about 6 months. I cannot wait to present it to her.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzLUfuN_NqvRTWOAOD91LQ1m_VoRXQXcZD22UQZJbS-adbkJoo2E-mEH4maDAsa3u4MfxmtPZo6Gdenbtqq88a3g7m-hmklKVljUlgQB7kK8iyYSFyM0k3ia3VykUgUoOEZnWTgpPhF4A/s1600/nerf.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzLUfuN_NqvRTWOAOD91LQ1m_VoRXQXcZD22UQZJbS-adbkJoo2E-mEH4maDAsa3u4MfxmtPZo6Gdenbtqq88a3g7m-hmklKVljUlgQB7kK8iyYSFyM0k3ia3VykUgUoOEZnWTgpPhF4A/s1600/nerf.jpg" /></a></div>
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I also found this blast from my past, Puppy Surprise:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4epSqwkA_9oEggptgd5XYKEtNs1Zd8QZiOJTu2b-rdvv6sosft0QoV_3wDYMMyQCzblPimhzL0_y1vyUbp_l9JKPspVl2DcL6BPxRAvWKYHu-Y2gcqqC-Eu3SKoN5ERyMyg7FhXgAKn8/s1600/puppysurprisepic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4epSqwkA_9oEggptgd5XYKEtNs1Zd8QZiOJTu2b-rdvv6sosft0QoV_3wDYMMyQCzblPimhzL0_y1vyUbp_l9JKPspVl2DcL6BPxRAvWKYHu-Y2gcqqC-Eu3SKoN5ERyMyg7FhXgAKn8/s1600/puppysurprisepic.jpg" height="240" width="320" /></a></div>
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It is a pregnant puppy. You open its Velcro tummy, and get a secret number of puppies out. It's a little freaky, but for someone who is obsessed with matching and family, it's going to blow her mind. And its name is Popcorn. Another one of her favorite things.<br />
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I'll post pix of her receiving them, but for once, I am really, <em>REALLY</em> excited to see her reaction! :)<br />
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As always, her birthday reminds me where she is not, compared to her peers, but, <em>every </em>single year, we can look back and see some <em>major</em> strides in some aspect of her development. And we quite honestly party!<br />
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This year, we are <em>PLAYING!!!</em>Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-53132743470378485172014-10-02T05:46:00.001-07:002014-10-02T05:46:40.679-07:0031 for 21: AngelsI have totally hit this one a thousand times. I am sure I will hit it again another thousand...<br />
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If I hear "Oh, you have a child with Down Syndrome? They are <em>SUCH</em> angels!!!" again.....<br />
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Well, I'll sigh and tell them my kid is just like theirs...she rolls her eyes at me, she ignores me, she talks back to me, she snitches food out of the pantry and lies about it...pretty standard for any 11/12 year old... Not really that much of an ANGEL.<br />
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But I do have to bring to the fore a thought I had yesterday...When I was thinking about their drive to live their lives like everyone else, I am reminded that they also tend to celebrate...a lot. Which is, I think, why people think that they are such angels... Which made me wonder why they seem take the lion's share of celebrating? I think it comes back to my commentary yesterday, on the needfulness of trying harder than the average bear to succeed in their plans for life? I think the world thinks they are angels because they are triumphing more, because they are more aware of their goals, because they have to work harder and have more pressure than most.<br />
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Pro soccer players or those at the World Cup, for example. They play the same game as my 8 year old niece. The plays are almost identical. The goal, certainly is. To win. But their celebrations... just...wow. I cannot say in all the years of watching soccer games in high school or watching my own kids, have I seen this: <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYjg05zdJESHm2FlbDdvLvsHFa639su7aDijbcfpGDXJ4cass4SMu0ckTsm0gZNL3MRFay0bCiC8yvMKyqnBnNfKpGqFGyl-OfiQrXMqyqVjMKjyS0xHhO-nbQFw3_QqE-gb12p9Yi8tw/s1600/soccer.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYjg05zdJESHm2FlbDdvLvsHFa639su7aDijbcfpGDXJ4cass4SMu0ckTsm0gZNL3MRFay0bCiC8yvMKyqnBnNfKpGqFGyl-OfiQrXMqyqVjMKjyS0xHhO-nbQFw3_QqE-gb12p9Yi8tw/s1600/soccer.jpg" height="203" width="320" /></a></div>
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And my sister-in-law hasn't posted any pictures of my niece like this:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo9xI_vEJSguzu1bSKDJD7qVuvuU2g7U-GPK6jJLfmMFN60D1rsp6ChTjVhVGEBun6W4i9p1KMbmpC-7SwN8FX5wneLDJkR-wGZJf_DRDRxmtAD8-MZJdtox4yliUUz7HPprdS6Q0R3_s/s1600/soccer+mia+hamm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo9xI_vEJSguzu1bSKDJD7qVuvuU2g7U-GPK6jJLfmMFN60D1rsp6ChTjVhVGEBun6W4i9p1KMbmpC-7SwN8FX5wneLDJkR-wGZJf_DRDRxmtAD8-MZJdtox4yliUUz7HPprdS6Q0R3_s/s1600/soccer+mia+hamm.jpg" height="320" width="256" /></a></div>
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I propose that the celebrations that almost all the people I know with Down Syndrome indulge in, may not come from an angelic sense, nor from a child-like comprehension, as much as an exaltation of success or inclusion...against a hard fought battle...after a long, excruciating, physically demanding, and soul-sapping battle.<br />
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They might just be reveling in victory. <br />
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Which only earns them angelic status, if you want to go the flaming sword route...which, I wonder if it gives you as much pause, as me?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlyayitvSa6E3J9P6BTQcAiiG2W8uLLAwJ-RpJOVOB5qRWj_oeiFtHSBaUVyknQh4D2lg0R8I5puCvDqEUz_aXD7KbcpY1QC9-cKjstrHhBO2g10M21sM05H5sayMrpFF5sgVto1H__DA/s1600/flaming-sword-large.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlyayitvSa6E3J9P6BTQcAiiG2W8uLLAwJ-RpJOVOB5qRWj_oeiFtHSBaUVyknQh4D2lg0R8I5puCvDqEUz_aXD7KbcpY1QC9-cKjstrHhBO2g10M21sM05H5sayMrpFF5sgVto1H__DA/s1600/flaming-sword-large.jpg" height="219" width="320" /></a></div>
Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-64648898346434726942014-10-01T08:26:00.000-07:002014-10-01T08:26:12.917-07:0031 for 21: Awareness is a stupid word.Awareness is a stupid word.<br />
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There, I said it. This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. <br />
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I know this is silly, since I just promoted Childhood Cancer Awareness Month. But it's a little different, stay with me...<br />
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Some awareness months make more sense. Like: "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken." Breast cancer, heart attacks, prostate cancer...stuff like that. Also, awareness that promotes being involved to help research funding, that is reasonable.<br />
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Others are dumb. "Hey, something like this exists outside of you and your circles of 'normal'." Most people already know that. You know how I know? Because my kid gets crooked looks whenever we go out. Anywhere. People are darn sure aware she is different. They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception. That eliminates only those who think they might catch her different-ness.<br />
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I am also aware that I am not 5. I cannot catch being 5. I understand what causes being 5. I understand that being 5 is different than being 38. <br />
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So. Big whoop.<br />
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I confess, I am spoiling for a fight, a little, this year. I am done begging for you accept that my gal exists and I am proud of it. I am requesting that you choose to understand, and better <em>your</em> life for the knowledge.<br />
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If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.<br />
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Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life. 5 year olds can play with abandon. They don't care what people think. They can create anything, they suffer no barriers of why something could not work. They get excited by things that you take for granted. They get ecstatic about things that annoy you. They aspire to do the fantastic. Their imagination is limitless. They are lucky. You should aspire to incorporate their "<a href="http://en.wikipedia.org/wiki/Joie_de_vivre">joie de vivre</a><strong>" </strong>into your dumb, boring, "adult" life.<br />
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Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination. It's terribly cool. And you are reminded what you valued when you were 5. You are refreshed. (After you sleep off being tired from growing and changing so much, so fast, of course.)<br />
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Well. Guess what? Being with someone who has Down Syndrome can regenerate things in you, too. They are awesome. They are remarkably like other nice, boringly normal people. <br />
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Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can. But because the achievements in their lives were a little more like a<a href="http://www.spartan.com/events/?event_id=354/atlanta-sprint&c3apiks=264631&gclid=Cj0KEQjwzK6hBRCbzLz_r_f-3tkBEiQA-zyWsKBRT5Tlzc_Yi2p1Eogvq6-yU3BxRMiCL6mQTw8APycaAnrK8P8HAQ"> Spartan Run</a>, instead of a rolling walk through a meadow, their triumph is palpable. <br />
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Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn. They are also people. Tired, pushed, and aware. And they want to achieve what you do. <br />
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Guess what? You need to take this October to understand their training, their battle, and swear to come along side and cheer. And sign on as training partners. Offer experiential advice. Offer support. Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different. See it as a sign that you should give your respect. Offer camaraderie, not pity. They don't need that any more than a rock in their shoe. If all you are going to do is stick rocks in their socks and put obstacles in their way, get out. And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.<br />
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So. Forget awareness. Sign on for appreciation or celebration. Or accept that your life will be the less for not "<em>accepting</em>" them.Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-70748967418029294542014-09-30T18:11:00.001-07:002014-09-30T18:18:38.810-07:00Childhood Cancer Wrap UpI was a little brutal this month.<br />
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Usually I tend to focus on Elise's journey with Cancer. I dwell on her treatment, the people who blessed us, her miracle and the impact that it has had on all of us.<br />
<a href="http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html">http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html</a><br />
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Last year, I listed names.<br />
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This month, I shared photos of our friends that lost the battle. <br />
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Lost.<br />
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These are people who are in my periphery of thoughts often. At least once a month, usually more. And not as a passing thought, but really dwelling on them.<br />
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I know their parents must have them in their periphery on a constant basis.<br />
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Children are the most resilient beings. And not just in life, but medically. They bounce back with truly awe-inspiring magnificence. You can ask any medical professional, in any specialty.<br />
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If they had anywhere near the money spent on research that adults receive, I am sure that there would be breaking discoveries on a nearly constant basis.<br />
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Out of all the federal/public funding in cancer research, less than 4% is spent on children's cancers. Out of ever $100, only $4 goes to kids. That is paltry. And that is ALL forms of children's cancers...tumors, leukemia, genetic forms, brain cancer...you name it...<br />
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You can google graphs, the survival rates have come up with increased funding. They come up when they have people believe in them enough to say, we know you can find answers. We will help you. That's what your $5 says when you donate to St. Jude while you are Christmas shopping. When you send $10 to AFLAC or <a href="http://www.curechildhoodcancer.org/">Cure Childhood Cancer</a>, you are standing shoulder to shoulder against every parent's darkest fear...and you are fighting. Earnestly.<br />
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Do our kids not deserve a fight that is armed with the latest information? Do they not deserve weapons that work against this monster?<br />
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Would you go into battle with last year's information? <br />
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And yet, pediatric cancer patients do, daily.<br />
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Fund them. Find a chidlhood specific group, check on their financials, and donate. If you gave like the goofy ALS ice bucket challenge, you could give children full lives. And that was a social experiment whim. Imagine if you engaged and fought with them?<br />
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They could go into adulthood, warriors. They would be the ultimate survivors. Their families wouldn't have to listen to the what-ifs in the back of their minds...they would know who they would turn out to be. They would have the ultimate purpose: living life and impacting others.<br />
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My Elise is a survivor. She won her battle with 10 patients on her protocol. That means that it was BRAND NEW INFORMATION. But that was also 10 years ago. And I believe that is still the standard treatment protocol. It's working, mind you. We can say 10 years later, that she is still free from relapse or secondary cancers. <br />
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We have another friend that won. Her name is Ashlyn. She is a tiny little thing with a soul of a Navy Seal. She won. Thanks to random Christmas donations. Or people like me that have too long a list of those that Cancer took from their parents...and <em><strong>want it to lose, every single battle from now to eternity.</strong></em><br />
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<strong><em>You can make that happen. </em></strong><br />
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Choose a reputable group. <a href="http://www.stjude.org/">St. Jude</a>. <a href="http://www.curechildhoodcancer.org/">Cure Childhood Cancer</a>. Your local childhood cancer chapter. Beat it down. Send it your coffee money once a month to them. I don't care how small. If everybody did it half the year, or when they remembered, <em>you'd outspend the government</em>. In the <em><strong>BEST WAY POSSIBLE!!!</strong></em><br />
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<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com0tag:blogger.com,1999:blog-6613098443917855826.post-76843781538331700222014-08-14T07:00:00.004-07:002014-08-14T07:19:54.898-07:00Talk to Me<div class="separator" style="clear: both; text-align: justify;">
Yesterday, Elise had her six month assessment in her outside-of-the-school Speech Therapy. I always dread assessments these days. I mean, I don't care as much as I used to. It used to make me sick how far behind her peers she was. The gap just kept yawning. But I like to see improvements, and those have been snail slow and miniscule. My only comfort has been that we were still moving forward.</div>
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<strong><span style="font-size: x-large;">But Yesterday, People!!</span></strong></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9wiXQl6rHdtVrQZYfn4fJKgvP4pjeWe_NXNWTWiRQEwvio1ygnqjR5GNoIEAk6TtuqG_vom7ViHrSvgBooM1AAAZwSSwPJWmY7-ShtgZzCYjkQ4zWf7Xr2kKnjyt3rkmTDWPygKq684w/s1600/communication+assessment.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9wiXQl6rHdtVrQZYfn4fJKgvP4pjeWe_NXNWTWiRQEwvio1ygnqjR5GNoIEAk6TtuqG_vom7ViHrSvgBooM1AAAZwSSwPJWmY7-ShtgZzCYjkQ4zWf7Xr2kKnjyt3rkmTDWPygKq684w/s1600/communication+assessment.jpg" height="239" width="320" /></a></div>
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Elise has improved in Auditory Comprehension by 5 months in the last 6. I don't think we've had an improvement this big EVER. I mean, do the math for pity sake. Elise is 11 years 10 months, and as you can see on the paper, she stands in the 2-3 year range. <br />
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In case you haven't read a million of these assessment papers like me, in Auditory Comprehension, she moved from 3 years/6months to 3 years/11 months. Practically bang on the money!! This means that she is improving in what she understands when she is told something.<br />
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She only progressed from 2 years/8 months to 2 years/10 months in expressive speech, but it was still movement. Also, her speech therapist confided that most of the cut offs were BARELY missed. You progress by blocks of 3 questions, and if you miss the 3rd question, even if you get 2 correct, you don't move up to the next level. So, Kathleen told me that there were several blocks that she missed by one, only, so her progression may be impressive next time, too.<br />
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I've been pleasantly encouraged that Elise has been improving in her speech and enunciations. I hear the change, and far more importantly, I see others understand her much better. And here we have legal proof, that her verbal prowess is not all in my head!! And it means if it's there in her comprehension, it's all up in her head, which means it will eventually make it out in Expressive Communication....someday.<br />
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I have asked several of my friends with older kids with Down Syndrome about their speech progression. They have encouraged me a thousand million times over the years. There are many kids with DS that progress with their peers, with a few enunciation issues. There are some that start slow, but catch on quickly as therapy and peers move in their lives. There are some that take their sweet time and really come into their speech in middle school and high school. It appears that Elise has decided to follow that last path. But that peace for me is that there is still significant hope that she will continue to really grow before adulthood...and she won't be like previous generations where they stagnate due to lack of involvement in their world. Elise would never stand for that anyway. Being low in speech has never discouraged her from chatting up people out in public.<br />
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I have to take this moment to say that online social media has been the best thing in the world for the special needs parents. You have more access to information and to veteran parents than ever before.<br />
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Recently, I have even gotten some information concerning Elise's fine and gross motor plateau. I am girding myself with information in preparation for entrance into middle school. And I'm starting to look forward to outside OT and PT for her particular support. <br />
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When Charlotte (my youngest) took her sweet time to potty train, I had several mamas giggle and say, "Well, I've never seen anyone in Kindergarten in diapers." And I was encouraged. When I have a conversation with a veteran mama of a young adult with Down Syndrome, and she keyboard giggles and says, "All the adults with Down Syndrome I know, can button their pants and tie their shoes and talk to friends." Well, frankly, it has the same heartening effect. <br />
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And so, we Keep Moving Forward.<br />
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(<a href="http://miceage.micechat.com/suekruse/sk033007a.htm">credit</a>)</div>
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<br />Tiffanyhttp://www.blogger.com/profile/12271140179686854124noreply@blogger.com1