Tag: MS

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Disability

Autism and Holidays: Success Through Meticulous Planning

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Shannon Des Roches Rosa www.squidalicious.com As the 2008 holiday season sputtered out and the last relatives left our house, I exhaled, then smiled. I’d really enjoyed all the feasting and fun, from the morning moment the kids’ cousins started frolicking underfoot, until the last precious late-night conversation wound down. But there is no way in hell we can manage another holiday season like that one, because floundering in all the happy happy joy joy was one miserable, disoriented, sleep-disturbed little boy with autism and his equally disoriented parents. Please, learn from our mistakes and successes so that your holiday season can be as enjoyable as ours was but suck less than ours did. Your advocacy skills need to go into overdrive during the holidays. Of course you need to advocate for your child, to ensure they’re accommodated — but you also need to advocate for yourself. Your children are sensitive…

Disability

Tree

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Shawn C. Graves We’ll call him Tree — trees fascinate him. He climbs them in reality and in his dreams, fearlessly. Tree is five years old. When his mother (Mom) and I started dating, we immediately spoke of our children. I have two daughters, three and seven. Mom has two sons, five and eleven and a daughter, fourteen. We both found out quickly that we were proud parents and shared several parenting notions and ideals. She then explained to me that Tree was autistic. Of course, I have heard of autism before. But I was to soon find out I knew nothing of it. I mean it’s our nature, right? If something doesn’t directly affect us or interest us, we rarely find out more about it than what the media tells us or what mainstream society thinks about it. I honestly didn’t give the issue much thought — I was…

Disability

Creating a Special Education PTA

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Jennifer Byde Myers and Shannon Des Roches Rosa www.SEPTAR.org Community is critical for parents of children with special needs. Community gives us emotional support and provides information about our kids’ therapeutic, medical, and educational choices. Our communities have the experience and knowledge to weigh in on our decisions; its members empathize and help us keep going when times are hard, and they rejoice with us in our children’s accomplishments. It’s not always easy to connect with parents like us. These kids we love so much are vulnerable, they need us – and the demands of our extra-intense parenting can leave us feeling drained and isolated. But if you can muster a burst of energy and round up a few like-minded individuals, then you can create your own community: by forming a Special Education Parent Teacher Association, or SEPTA. That is what we did when we helped found SEPTAR, the Special…

Disability

The “R” Word Revisited

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Brian R. King, LCSW spectrummentor.com Recent headlines about the epidemic of bullying, unfortunately, point to school systems overall that appear either indifferent to bullying, referring to it in some cases as “a right of passage that children must endure as a means of building character” (one school administrator actually said this in an IEP meeting I attended), or they minimize it as a misunderstanding. Others exercise willful ignorance under the guise that “We didn’t see it”– as though the bully is supposed to say, “Teacher, looky here! I’m going to treat Johnny like crap now.” Give me a break! If a child bullies another student out of the view of a teacher, it’s still bullying and not an opportunity to evade responsibility because the bully is savvy enough to know when you aren’t looking. Let me be clear, bullying is not a simple problem of the playground tough guy establishing…

Disability

Sensory Seekers and Sensory Avoiders

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Hartley Steiner www.hartleysboys.com For the purpose of this post, I am going to list sensory seeking and sensory avoidant behaviors, to paint a more accurate picture of what sensory-based behaviors look like. You can consider these ‘symptoms’ or a ‘checklist’ but my real goal in posting them is to help parents and caregivers recognize the sensory challenges in the children in their life.  In addition, I hope to paint a more specific picture of the kinds of behaviors Sensory Seekers exhibit. Sensory Seekers I completely ignored the first person who suggested Gabriel had Sensory Processing Disorder (SPD). Technically, I even made fun of her. How stupid was she to suggest my son had sensory issues? My kid wasn’t one of those who covered his ears at every little noise, nope, not my kid. My kid was fine with loud noises, loved water, mud, hot salsa and was not afraid of…

Disability

Buying Hope

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Jennifer Byde Myers www.jennyalice.com Lotions, potions. A special chair for eating, a special chair for learning at home. Shoe inserts, leg braces, seat cushions with no grip, a lot of grip, seat cushions with little bumps, seat cushions with little bumps and gel inside, and a backrest. Fancy forks with bendable handles, child-sized forks, spoons with holes in the bowl, bowls with grips on the bottom, bowls with the side cut out, and special chopsticks, and sippy cup after sippy cup with any number of parts and combinations to mess up. Small piano keyboards, and larger piano keyboards, and a keyboard you can walk on, just like in the movie Big. A touch screen monitor, an adapted computer, an adapted tricycle, an expensive German tricycle. Jackets that zip with a nice big tab, pants with an elastic waist that are easy to take off, overalls which are difficult to take…

Disability

The Inclusion Dance

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Susan Etlinger www.familyroomblog.com It’s official: I’m a bitch. By which I mean I’ve moved past that initial flush of optimism and teamwork and wanting everyone to feel good about themselves to disappointment, confrontation, detente, anger and now — inevitably — relentlessness. And it is relentless — for reasons bureaucratic, cultural, personal, possibly gender-determined and sometimes inexplicable. The day starts with a clamor of children in the big yard. It’s an expansive space — too much for the Kindergartners, much less any child with sensory issues — and children whiz around, hollering, bumping into each other, a chaotic, moving mass of kidness. Isaac refuses to set foot in the yard. This full frontal assault first thing in the morning is unbearable. He makes a beeline for the library, and insists we sit and read a book. He falls apart when I tell him it’s time to go to the classroom. “Nooooo,”…

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Disability

Shifting Focus: Eight Facts About Autism the Media Is Not Covering

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Holly Robinson Peete www.hollyrod.org Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy’s phone call shortly after her son’s diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for seven years already.  We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I’d be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she’d help spread autism awareness like…

Disability

We Fight the Fights That are Worth Fighting

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Elise, A.K.A. aspergers2mom asd2mom.blogspot.com  Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have — if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming. Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come.…

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Disability

For the 85% of Us Who Can’t Work

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Clay http://cometscorner-clay.blogspot.com I can’t say I’m surprised to learn that most autistics have a great deal of difficulty getting, and maintaining a job for more than six months. I believe it, because I know just how hard it has been for me. I saddled myself with a wife and two kids before I even got out of the Navy, and for quite a while, the subject of my wife getting a job wasn’t even discussed, because our generation wasn’t much into that. Instead, I took whatever job I could get, starting as a low paid parts clerk, until I accepted my stepfather’s offer of helping me get a job at an iron ore mine, (which paid much more). After I recovered from a huge accident, I returned and worked there for another three years. They gave me some hard and nasty jobs for awhile, such as wrestling with 55 gallon…