Asperger Ninja aspergerninja.blogspot.com As parents, we always worry if our children get sick. That’s part of our job. We are prepared before they are even born, having been told countless stories by our parents, friends who have children ,and sometimes, complete strangers who are more than happy to spin tales of their children’s maladies. But no one ever truly prepares you for when you get sick. There is no chapter in the Parents Handbook on how to prevent or be ready when you need to be taken care of. That’s usually not an option. Moms, dads, and caregivers are known for working when under the weather, but there may come a time when you have to actually go to the hospital. In most incidents, the other parent will take care of the child (or children) while the other parent is ill. But what if you don’t have that choice? I’m…
Tag: MS
Kelly V. Russell http://2006housewife.blogspot.com My child has autism … and I, as his mother, have never felt so isolated in my life. My son has severe speech delays. This is why he doesn’t talk to you. Why don’t you speak to him? My son perceives the world in a unique manner. This is why he plays with toys in an abnormal way. Why don’t you play with him? My son has difficulty understanding social cues. This is why he avoids eye contact. Why do you stare at him like he’s an animal in a zoo? …Or even worse, ignore him, as if he’s not a human being. Being his mother does not make me a saint, though sometimes I feel like a martyr. His condition does not mean that God entrusted me with a special blessing. Autism means he was born with a formidable glitch in his hardware … a…
Jennifer Byde Myers www.jennyalice.com www.canisitwithyou.org www.haveautismwilltravel.com It was almost dark when we pulled in to the campground in Ohio. I went to the door of the manager’s office, and the sign said, “Will return 9:00.” I am an eternal optimist (HA!) and hoped that it meant in eleven minutes at 9pm instead of 12 hours later. We had a reservation, called in hours before, but there were no instructions left for us taped to the door. Most RV parks and campgrounds will do this, so you can still find your way in the dark. As I stood there on the porch, looking back at the RV, knowing that my children were probably yelling at my tired husband because they so desperately want to get OUT of the RV when we stop, I thought I might die of exhaustion. I wilted a little in the heat, and began to survey the campground…
Shannon Des Roches Rosa www.squidalicious.com A lot of us parents like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a life care plan, because that means we’re envisioning the future of our children with special needs without us at their sides. But denial and avoidance do both us and our children a disservice. The time to think about planning for our children’s future is now — the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think. The following summary is based on a 2010 SEPTAR.org presentation on Financial Planning and Your Child’s Future, given by Nick Homer, a Special Care Planner from MassMutual’s general agency in San Jose, Miceli Financial Partners Wealth Management and Insurance Services (MFP). While the following information is…
Prather Harrell www.africanamericanautismofaz.org No, not my autistic five year old son … I’m the one on the verge of a meltdown! It was one of those days where I could not seem to make anyone happy. Jonah, my five year old, had been having a bad summer all along. I can’t say that I blame him. Here we go changing his schedule around from KinderPrep (ABA/habilitation) in the mornings and public preschool in the afternoons with a few therapies sprinkled in between, to therapies in the morning and KinderPrep in the afternoon and no more Mrs. Marsha period (his preschool teacher – Jonah completed preschool this spring and will be headed to Kindergarten this fall). The teachers changed, the students changed, some of his therapists changed — we flipped his entire schedule around and no one ever consulted him about it. I guess I’d be pretty pissed too if somebody…
TPGA is taking a wee break as all but one of our editorial staff is traveling — with our children with autism — and that is a rather time-consuming and internet-unpredictable undertaking. We’ll resume posting essays on Wednesday, August 25th. We’re very grateful for the fat pile of submissions both published on the site and upcoming, and encourage you to submit more, share more, build community more. The discussions in the comments have been fantastic! Our thanks to everyone who has helped our community thrive. While we’re away, you can check out what our editors have been up to: Liz has been doing helpful TPGA round ups: Thinking Person’s Guide to Autism: Authors June 6 to August 2: What A Lineup! Thinking Person’s Guide to Autism: June 6 to August 2: Posts By People With Autism Thinking Person’s Guide to Autism: June 6 to August 2: Autism from Diagnosis to…
Jean Winegardner www.stimeyland.com When I write my column Autism Unexpected for Washington Times Communities, I use the words “person with autism” and “autistic person” pretty interchangeably. Every once in a while, I get a comment telling me I should use “person first” language, meaning I shouldn’t use the word “autistic” to describe a person. Because I’ve heard this criticism more than once, I feel it necessary to tell you that I not only use the word “autistic” intentionally, but thoughtfully and with purpose. The theory behind person-first language (“person with autism”) is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my Twitter followers which they preferred, and the majority, mostly parents of children with autism, reported that they prefer the person-first terminology. Person-first language is an easy philosophy to accept. It makes…
Estée Klar www.esteeklar.com I have always found the idea of blaming the autistic child for the deterioration of marriage unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might in some way be true. A single mom of an autistic child for several years now, I’ve seen that when relationships fall apart, we begin by looking outside ourselves for the external causes to blame. No matter what the circumstance, illness, disability, death are the certainties of a full life. We make vows for better or for worse, even if most of us want the “better.” Frequent divorce seems to reflect the advent of the re-start button — an impatient, quickly gratified culture with many options at our fingertips, and a waning attention span. It’s perhaps an unforgiving view about what as…
Susan Walton www.discoveringfamilyfun.com It’s important to realize that you cannot cope with this new element of your life alone. And you shouldn’t try. There is help out there for you, for your child, and for your family, and you should take advantage of it. In addition to uncovering the services and agencies that offer assistance, you want to find and keep the friends and professionals who will sustain you. And conversely, you may need to minimize your exposure to the people, feelings, and obstacles that drag you down. First and foremost, your best allies are other parents who have a child on the spectrum. You can find existing parent networks through local support groups, parent clubs, assistance agencies, and online forums like Yahoo Groups. Joining those groups is a great way to get started. To find out if there is a Yahoo Group for parents of children with autism in…
Liane Kupferberg Carter http://www.huffingtonpost.com/liane-kupferberg-carter My husband and I had grown increasingly uneasy about our second child Mickey. Though a warm, engaging baby, he showed no interest in playing Peekaboo, How Big is the Baby, or waving bye-bye. At monthly visits the pediatrician assured us all was well. But by 18 months, Mickey had only three words, which is why fourteen years ago we finally found ourselves sitting in a cubicle at a major teaching hospital. A team of unsmiling experts spent two hours poking, prodding, and measuring our son, asking him to draw a straight line, stack cubes, put pegs in boards. I perched forward to catch the doctor’s words more fully, hoping to hear how adorable, how promising my child was. Instead, she said: “Don’t expect higher education for your son.” It felt as if we were looking down an endless, dark tunnel. Our radiant little boy had just…