POSTS WITH TAG: special needs

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    The diagnosis comes. Your child has what's commonly known as a "special need." So you turn to the experts, to the books, to anything and anyone who can answer the questions swirling through your head.

    But if there's anyone you should be asking how to proceed now that your child has a diagnosis, it's the people who have already walked in your shoes -- the mothers of other kids with special needs. So we asked moms of kids -- moms who have autistic kids, moms who have kids with limb differences, moms with kids who were born with Marfan syndrome, even moms who have their own differences -- for one essential "life tip" they would give to any other parent who is about to embark on the journey of parenting a child with special needs. Here's what they had to say:

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    At this point, it seems like there's an app for everything. And it's all for good reason. Tablets and smartphones are versatile and easily accessible, and kids pick up on how to use them extremely quickly. Which makes them even more helpful when teaching children with sensory issues.

    There are apps with high auditory and visual stimulation that will teach how sounds and pictures interact. There are also apps for sound sensitivity that help to calm and gently provide a soothing soundtrack to any activity.

    So for your convenience, we've put together a list of the best apps for kids with sensory disorder, as determined by high parent reviews and award rankings:

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    Hunter Gandee, 14, has been carrying his 7-year-old brother Braden for years. They've walked around the home, on mountains during family camping trips, and just around the grocery store. But this weekend, the two are embarking on a much longer journey. Hunter will carry Braden for 40 miles, from the gym at Bedford Junior High (where Hunter regularly wrestles) all the way to the gym at the University of Michigan.

    It's all to raise awareness for cerebral palsy and to broadcast the brothers' Cerebral Palsy Swagger awareness project. The cause has been near and dear to the family's hearts since Braden was diagnosed with cerebral palsy back when he was 3 months old. The condition, which directly affects Braden's brain, impairs his walking, mobility, and general movement. But he has Hunter there to help.

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    Approximately 10.2 million children in the U.S. have special needs, and each of their experiences is different. There's one awesome quote out there: "Autism is a journey I never planned, but I sure do love my tour guide," and it applies to moms of children with all special needs. It's a path that's unexpected, and every mom has her own approach. Here's what moms had to say about caring for their children:

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    Not every woman makes the decision to have prenatal testing done in order to find out any genetic abnormalities their baby may be faced with, but many do. Michele Gallerizzo was in the latter camp. At the "advanced maternal age" of 35, Michele's doctor suggested she undergo a nuchal translucency, a special ultrasound, which lets moms know if they're at risk for having a child with a chromosomal problems, such as Down syndrome, and she happily obliged. She was relieved when she learned that everything checked out okay and that her predicted odds of giving birth to a child with Down syndrome were 1:3,800.

    So you can imagine her surprise when she learned that she did, in fact, give birth to a child with Down syndrome.

    Michele recently talked to The Stir about how she felt, finding out her son Alex's diagnosis; what it's like raising a child with Down syndrome; and how her child's diagnosis has changed her.

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    Failing to see eye-to-eye with loved ones -- especially when it comes to how you parent -- can be frustrating and upsetting. But moms with kids who have autism may feel particularly overwhelmed when family members fail to understand their child's autism diagnosis and, in turn, what they're going through. Worse yet when family members or close friends -- either out of ignorance or denial or other emotional issues -- spout off insensitive, misguided assumptions about a child on the spectrum. It's bad enough when strangers don't get it, but when those who are nearest and dearest to the situation blame a mom's parenting or make remarks that come off clueless at best, and heartless at worst, it can feel absolutely devastating.

    Here, moms of kids with autism share 15 of the seriously insensitive things they've ever heard from their loved ones ...

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    Filmmaker Kelly O'Brien has made headlines for her moving film Softening, and its short adaptation, "My Brother, Teddy." Her aim: To capture the experience of raising a child with severe physical and developmental disabilities. In "My Brother, Teddy," Kelly illustrates the beautiful relationship between her then-6-year-old daughter Emma and her 3-year-old brother, who has cerebral palsy. While the film has resonated with many parents of children with special needs, the process of making it actually served various purposes for O'Brien.

    Kelly talked to The Stir about what inspired her to turn to film to cope with Teddy's disability, why brutal honesty works best for her, and what she advises other moms of disabled kids.

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    Let me be totally honest with you.

    For quite some time, I spent my days as a mom in denial, not seeing Jack's issues that were right in front of me. I was trying to will away certain labels and diagnoses. There are labels in the preemie world that I shunned. I desperately didn't want them for Jack's life. Labels like Cerebral Palsy and Special Needs. 

    I did not like those terms. They implied something. They had such loaded meanings. And they brought pity. I hate pity. Just please, please do not pity me! I don't need your well-meaning, but sad, pat on the back.

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    I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt -- or stop it -- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be."

    Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say, I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could.

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    So I’m sitting in my bed feeling fairly crabby, and really not interested in writing – although I had every intention of doing so. I am reading people’s work, I am considering watching some back episodes on my iPad. Then my son starts hacking. If you know me, then you know my son sleeps with me. If you don’t know me, now you know my son sleeps with me, he’s 7. I once wondered in a post; when it would stop. Trust me, that was tongue-in-cheek. This is why it won’t stop.

    I hesitate to call my son special needs, because what does that mean really? I don’t think it’s fair to all of the other kids out there who are truly handicapped, are autistic, have issues that are crippling and unexplainable. Yet my son has special needs.

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