2010 In Review: Thanks to All Contributors

Liz Ditz http://lizditz.typepad.com/i_speak_of_dreams/ http://lizditz.typepad.com/academic_remediation/ On behalf of my fellow editors, Emily Willingham, Jennifer Byde Myers, and Shannon des Roches Rosa, I’d like to thank all of the 2010 contributors to The Thinking Person’s Guide to Autism. What follows is an alphabetical list of contributors, with links to their TPGA posts, their website(s) and twitter accounts (where available — some of our contributors have neither websites nor twitter accounts). Eighty contributors. 120+ posts. Many, many different perspectives on autism. Autism through the lifetime. Thank you all. Kate Ahern, Living the Least Dangerous Assumption. Blog: http://teachinglearnerswithmultipleneeds.blogspot.com/. Twitter: http://twitter.com/#!/teechkidz . Presentations: http://www.slideshare.net/teechkidz Kyra Anderson, Bring Everyone Out. Blog: http://kyraanderson.wordpress.com/ Anonymous Special Needs Professional, Why I Can’t Breathe Tonight Emma Apple, If the Scarf Fits Blog: http://www.bluehijabday.com/ Twitter: http://twitter.com/#!/bluehijabday Devon Koren Asdell, How I Know Vaccines Didn’t Cause My Daughter’s Autism Blog: http://community.advanceweb.com/blogs/ot_9/ . Website: http://dkoren.freeshell.org/. Stacey Ashlund, Comparative Misery and a Born-Again Buddhist…

Grace Needed an AAC App, So Her Mom Created One

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…

Book Review: Coloring Outside Autism’s Lines

Reviewed by Jennifer Minnelli, M.S., CCC-SLP Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism by Susan Walton I have finally found the book the School Psychologist was supposed to hand me when they gave us my child’s murky neurological diagnosis of Borderline Asperger’s and Sensory Processing Disorder.  Susan Walton’s Coloring Outside Autism’s Lines is a must-have for anyone who finds themselves at the intersection of social inclusion and the company of actual people. It is operating instructions for parents of sensitive, quirky, and differently-abled children. With her proactive and practical suggestions for how to keep your quirky child entertained and engaged in a variety of real-life situations, Susan Walton deserves honorary degrees in Speech Pathology, Occupational Therapy, Physical Therapy, and Child Psychology. Her skillful way of supporting and encouraging grieving parents to push on and pursue family dreams makes her also one part…

Cycles of Grief and Parenting a Child With Special Needs

Jennifer Minnelli, M.S., CCC-SLP  www.autismsphere.com The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community. Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk: Denial: “This is not my child. She can do what you’re asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the…

Don’t Yell. Embrace Your “Inner Bitch” Instead.

Elise, A.K.A. aspergers2mom asd2mom.blogspot.com   We have all heard the stories. That mother who just won’t listen when administrators talk about her child, the parent they delegitimize because she got frustrated and yelled at them, the one who thinks she knows her child best. So what do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids — who cares what others think? This is what I call “embracing your inner bitch.” Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching…

Why Every Decision I Make Matters

Lisa Brandolo Johnson www.grembe.com I recently read about researchers who suspect that children with autism have a different chemical fingerprint in their urine than neurotypical children. While the researchers’ claims are questionable, a urine test for autism would save me so much emotional anguish. It isn’t that I really think my son was misdiagnosed and that he is on the spectrum — but it would just be a final answer. A yes or no test would be objective, it would remove the human element of error. It would be concrete. I am a parent of a child who, according to the Autism Diagnosis Observation Scale (ADOS), is classified as non-PDD.  This is good news, right?  This means all of his delays can go away, right? His clinical diagnoses of developmental delays, behavioral disturbance, and anxiety related to sensory issues? Without a test for autism, I am left wondering what it means for my…

My Child and Me – Keeping Everyone Honest (Or, the Therapists We’ve Fired)

Jennifer Minnelli, M.S., CCC-SLP www.autismsphere.com When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it’s almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists. When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples’ opinions, when I felt I knew exactly what was going on with her and how it should be treated. Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked…

Understanding Autism: Gathering Autism Life Histories

Researchers from Columbia University have asked for our help in reaching out to parents on their project, which has such similar goals to The Thinking Person’s Guide to Autism. We hope that parents of children with autism who can participate, will. Thank you, -Shannon, Liz, Jen, & Emily, TPGA Editors Dear Parent, We are researchers at Columbia University’s Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child’s autism, seeking professional help and navigating the system of services. The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child’s development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents…

Autism, Apps, and Adults

Corina Lynn Becker http://autisticapp.blogspot.com/ http://nostereotypeshere.blogspot.com There’s been quite a bit of news lately about how Apple’s iPad can assist Autistic children. The stories I have heard are wonderful and hopeful, on how iPads and iPods could bring about a new era of portable supports, learning, and communicative devices, and independence. It has been pointed out that the portable devices, while not cheap, are inexpensive when compared to other specialized devices — which are often too bulky to carry around and be applicable to various locations and situations. With the development of specialized apps, a child, parent, teacher or caregiver can carry a small, slim device filled with programs to communicate, understand how to go places, be prompted on doing tasks, keep organized, learn social skills, filter sensory input, and regain calm from stress. For those with motor control problems, the large screen of the iPad offers more accessibility and opportunities…

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

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…