Shannon Des Roches Rosa www.thinkingautismguide.com www.squidalicious.com According to Tim Shriver, Chairman and CEO of the Special Olympics, FX is currently the only TV network that bans the word “retard.” Bullying of people with special needs remains entrenched, and insidious. According to AbilityPath.org, “Some reports estimate that nearly 85 percent of children with special needs experience bullying.” But it doesn’t need to stay that way. In partnership with the Special Olympics and Best Buddies, Abilitypath.org is launching a nationwide “Disable Bullying” campaign that will “engage a broad coalition of parents, educators, activists and policymakers to prevent and combat behavior that is widespread but has until now not been clearly documented.” Glee’s Lauren Potter and her mother Robin Sinkhorn are leading the call for action: AbilityPath has created Walk a Mile in Their Shoes, a toolkit-rich campaign report and guide [PDF]: AbilityPath.org is an online hub and special needs community for parents…
Tag: Special Needs
Lisa Domican www.graceapp.com There was no single thunderbolt moment when I understood my son, Liam, was not like other children. No “I knew where I was when John Lennon was shot, or Man landed on the Moon.” Instead it came over a number of weeks in one difficult summer, when little things started to add up and my husband managed to convince me that it was time to look for help. Liam was a bright, happy and alert little boy and everyone loved him. He was obviously clever; leaning out of his stroller at 18 months to look at road signs. But sometime between his second and third birthdays, my husband started asking questions. Liam wasn’t talking, he wasn’t looking at anyone, he wasn’t answering to his name — he was leading us to the cupboard to get a drink, but not asking for it. I resisted at first. Liam…
Anonymous Special Needs Professional Recently I read a post on The Thinking Person’s Guide to Autism blog by a parent named Pia Prenevost. It was called An Open Letter to Special Needs Professionals. The title made me feel a bit guarded at first (as a special needs professional), because my experience with Ye Olde Internets is that “an open letter” usually warns that a negative letter, a warning to the recipient of the “Oh, no, you di’n’t” variety, is coming. But that was incorrect, because in reality the author had written a lovely, heartfelt post about the vulnerability a parent of a child with special needs feels. I encourage you to read it, it’s beautiful. Here’s an excerpt: “I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if…
Jennifer Johnson As a parent of a child with both significant medical problems as well as a diagnosis of autism, I have tried to learn things and develop systems along the way to help me in terms of accessing care for my child and getting quality care. One of the tools that I developed for myself (and then later learned was available online in other forms) is a medical/special needs binder. I take it to all appointments for my son — the pediatrician, speech therapist, school psychologist, etc. Special Needs Binder: Why and How Whether your child has medical problems on top of ASD or not, you will unfortunately spend a lot of time in the offices of doctors, psychologists, school officials, etc. Each of them is likely to ask you many of the same questions again, and some will ask you the same things multiple times. My son has…
Pia Prenevost www.thecrackandthelight.com Hello? New teacher, or therapist, or doctor? Is that you? Oh hello… I just wanted to chat with you a second. To caution you. Or warn you. Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well … you see that heart? The slightly broken, definitely bruised one? Yeah, that’s my heart. My slightly-broken, definitely-bruised heart. Now, I realize that as you look at me you might see … a confident parent … or an angry parent … or a happy-go-lucky parent… You might think that I understand everything … or nothing … or that I have all the experience in the world because I have done this before … or that I know the rules … or that I…
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…
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…
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…
Emily Willingham daisymayfattypants.blogspot.com What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups. 1. From total strangers — and my mentions of autism in this context are rare — the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response. 2. From casual acquaintances, such as parents of other children and periodically from others closer to…
Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa Consider the same day, the same circumstances, the same children, the same parent – but filtered through two different attitudes: Leo and I had the worst day ever. Leo and I had the best day ever! Why does Leo always wake up so early? His sisters sleep until we shriek at them to get up, like self-respecting children should. I’m so irritated that he’s sometimes wet in the mornings. He’s never going to be fully self-sufficient. Leo got up at 6:30, but that’s certainly better than yesterday’s 6:00, and then it was his dad’s turn to attend to our early riser. And how amazing that Leo now spontaneously asks to go to the bathroom when he gets up, and is frequently dry. If you’d told me three years ago how well he’d be doing with his self-care at age eight, I wouldn’t have…