Anonymous Kids with special needs have, well, special needs. These needs not only present my kid with a lot of challenges; sometimes they mean I need to take unscheduled time off work. (It’s just how it is.) Aside from the time I need for standard IEPs, evaluations, school visits, and the like, my kid has also spent a fair amount of time in the hospital. My kid isn’t the type you leave and say, “be nice to the nurses.” You just don’t do that to a minimally verbal kid with intellectual disability. When my kid is in the hospital a parent has to be there. Which means no work during that time. When my kid was in the hospital, keeping my manager in the loop was not my main priority. I thought leaving a message on his voicemail, such as, “I’m in an ambulance with my son. It’s two AM…
Tag: Special Needs
Lisa Friedman jewishspecialneeds.blogspot.com We want April — Autism Acceptance Month — to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors In a recent post, Inclusion is NOT a Program, I reflected on the notion that while all of our synagogue’s programs, classrooms, and worship opportunities should be inclusive, inclusion is not a program. It’s not a one-time workshop or training session. Inclusion is an attitude, it is something that is just naturally woven into the fabric of what we do. At least it should be. Today I was reminded of something significant that I have learned from one of my mentors in the world of Jewish Disability Awareness and Inclusion. Rabbi Lynne Landsberg, Senior Advisor on Disability Issues at the Religious Action Center…
We chose the punctuation above for a reason — cautious optimism and the hope that, with the right guidance and attitude, we can make it through the winter holidays, possibly even with some happy memories. So if you, your families, and your friends are hunkering down for the holidays; and if you, like some of us are also a bit … stressed about changes in routine, location, or faces — consider what the wise folks below have to say about navigating this most tumultuous time of the year. And if you have any advice, please leave it in the comments below! Happy Holidays, friends. -The Editors —- Self-advocate Annabelle Listic: …it is especially important, during the holidays, for any autistic person to have: A way to communicate basic needs, emotions, opinions (a travel dry erase board, sticky notes with simple language on each, a typing program on a phone, tablet,…
Shannon Des Roches Rosa www.squidalicious.com Most parents fret about their kids’ hygiene and how it is affected by factors like circumcision, tooth brushing, or toilet training. Said fretting escalates when the kids in question have a disability, but hygiene doesn’t have to be the skunk cabbage in the parenting bouquet — not if parents do their best to understand why hygiene can be complicated, take cues from self-advocates with insights parents and professionals cannot provide, encourage self-care, recognize that not all hygiene needs will be rooted in disability, and help make self-care part of a routine. Circumcision is a standby topic in parenting circles. Arguments both for and against the snip invoke culture, religion, sensation retention, or wanting Daddy to have a penis twin. But few mention the possibility of conditions like cerebral palsy or the fine motor challenges that often accompany autism, and how those affect uncircumcised penis care.…
Shannon Des Roches Rosa www.squidalicious.com As many of us are planning summer excursions, here are the whys and hows of one autistic boy’s successful trip to Disneyland. Look, I grew up in Anaheim. Disneyland’s fireworks exploded over our house every summer night, and I played Dopey the Dwarf in the Main Street Electrical Parade. I couldn’t be more blasé about the house of Mouse, so if you told me that my former workplace would one day make me happy enough to cry, I’d have scoffed. But crying with happiness is exactly what happened during my autistic son Leo’s birthday trip to Disneyland — he had two full days of pure joy that melted my cold, hard, meh-filled heart. For my son, it really was a Magic Kingdom. Photo of Leo by his uncle Mike Des Roches Leo hadn’t been to Disneyland since 2004 because the interim years were challenging ones…
Sunday Stillwell Adventures in Extreme Parenthood This week hundreds of thousands will stand up and ask our family, friends, and coworkers to Spread The Word To End The Word. This means I am asking you to stop using the words “retard” and “retarded” because when you do, even if you’re joking, even if you don’t mean it as a slur, even if you’re talking about yourself what you are doing is disrespecting people with intellectual disabilities… people like my sons, Sam and Noah. Would you call my sons retards? Would you say that the ways they stim or perseverate on things is retarded? Of course you wouldn’t, but I have heard it said to them by kids on the playground who think the way Sam jumps up and down and flaps his hands looks strange, or because Noah likes to make loud screeching noises and run in circles. So I…
Jen Lee Reeves www.bornjustright.com Jen Lee Reeves is one of those people who always has a big smile and a big goal. She teaches social media and engagement at the Missouri School of Journalism and is the interactive director at KOMU 8 TV, the only university-owned commercial television station in the United States. She has built a great community on her website Born Just Right, and has plans to present on a panel at SXSW (South by Southwest) a series of conferences held in Austin that brings multimedia professionals together. She’s hoping our community can offer additional perspectives. What inspired you to get involved in the special needs community? My daughter was born in December of 2005 with a limb difference. She has a typical right arm and a left arm that stops right after the humerus and growth plate. I immediately felt the need to connect with other families…
Shannon Des Roches Rosa www.Squidalicious.com www.ThinkingAutismGuide.com Our family’s holiday traditions include: nightly panic over conjuring surprises for the 24 tiny drawers in my kids’ advent box, sending holiday postcards weeks after Christmas to a random one-third of the folks we love — and answering queries from family and friends about holiday gifts for Leo, our eleven-year-old son with autism. I am quietly freaking out over those first two, but thoughtful questions about appropriate gifts for Leo — I appreciate those, so much. While finding presents that appeal to my son can be tricky, I’ve become a pro at it and make suggestions with confidence. Here’s my advice for parents, grandparents, aunties, caregivers, godparents or friends looking for that perfect gift for kids with special needs. Don’t get derailed by age ranges on toy labels, because they don’t always apply. One of Leo’s all-time favorite toys is a Flip Flop Egg…
Syracuse University professor Alan Foley developed iAdvocate, a free iPhone app that helps parents of school-age children with special needs “share and develop specific strategies with parents for working collaboratively with a school team to improve their children’s education.” We’re grateful to Dr. Foley for talking with us about how iAdvocate can help our families, his development process, and how his app is setting a advocacy precedent. We recommend reading Syracuse University Magazine’s excellent Spring 2011 Access and Opportunity article for more information about Dr. Foley’s work. Your app is remarkable, and is filling a role a lot of people hadn’t anticipated — when it comes to autism and other developmental disabilities that can have a language component, folks tend to focus on iPods and iPads in an AAC (Augmentative and Alternative Communication) capacity. Apps like iAdvocate clearly demonstrate that these devices can be so much more. What inspired you…
Kim Dull modernparentonline.com/never-a-dull-moment I realize that 99.999% of the people I talk to regarding my son’s special needs and diagnoses have good intentions–they just have no clue what to say or how to react. They’re trying to help, but unfortunately some of the most common responses are the most irksome. I want to acknowledge that quite often I am just as clueless about how to respond when someone shares news, like a new diagnosis, even though we’ve been through it ourselves. Everyone is different and reacts differently; that’s what makes it so hard. What works for ME may not work for the next person. And this is not intended to make you feel like you need to walk on eggshells when you get this news. Quite the opposite: it’s intended to make you feel comfortable in NOT knowing what to say. So here’s a quick how-to guide for navigating the…