The First Rule of Autism Club

Amy Greatbanks www.ishouldhavecalledhimcalvin.wordpress.com  If you have seen the film Fight Club, then you most likely know that the first rule of Fight Club is “we don’t talk about Fight Club.” When we got hit between the eyes with the diagnosis of autism spectrum disorder for our son in December 2007, we had no idea we were joining such a large club. The sensation of knowing for certain that my heart-achingly precious, adorable, vulnerable child had autism was soul-crushing. And all I wanted to do was say it out loud. If we don’t give voice to this condition, we do the ones we love the most a great disservice. So many people with autism don’t have a voice of their own. That is why I vowed that my first rule of autism club was that we do talk about autism club. Almost every day I speak to someone about my child…

Advertising for Autism

Dr. Claire Hughes-Lynch www.professormother.com The Wyndham Hotel in Austin, TX recently started to offer “autism-friendly” rooms with sensory activities and an alarm on the door that will alert you when the door is opened. Colgate is sponsoring a Dental Tool Kit for children with autism. Dealing with a child’s Asperger’s is a main plot theme in the show Parenthood on NBC, the movie Adam and many, many other more main-stream media. Regal Cinemas offers “autism-friendly” movie showings in which it is OK to make noises, cry and wander around. Discovery Toys just started marketing a line of toys designed for children with autism. And of course, there are the various foods, technology and products specifically designed to educate, cure, support, and raise awareness of autism I think we’ve just reached the tipping point of autism being used as a marketing tool to reach families. As Kristina Chew said, back in…

Welcome to the Club

An Open Letter to a Friend Jess at Diary of a Mom www.adiaryofamom.wordpress.com My Dear Friend, I am so sorry for your pain. Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it. I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear. I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time. I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its…

Lean on Me

Alysia K. Butler trydefyinggravity.wordpress.com One night two months ago I spent some time in the company of some amazing women. All mothers, all with school age kids under the age of ten, all of whom “get it.” Earlier this year, a friend and I had the idea to start a small support group, to gather mothers or fathers of kids on the spectrum. With the help of our school district, we reached out to parents to see if anyone wanted to meet, just to talk. Our first meeting was so nice that we decided to meet again. And that night two monhts ago, our group expanded. Friends brought friends who had kids on IEPs. Friends brought friends who had kids with diagnoses but couldn’t get IEPs. And as the sangria and wine and spinach dip flowed, we sat and just talked. Some of us were meeting for the first time.…

An Open Letter to Special Needs Professionals

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…

When A Single Mother of a Special Needs Child Is Suddenly Ill

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…

My Child Has Autism…

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…

On the Verge of a Meltdown

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…

The Crucial String

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…

Does Your Child With Autism Have a Daily Record?

Shannon Des Roches Rosa www.squidalicious.com www.canisitwithyou.org www.blogher.com/blog/shannon-des-roches-rosa There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including but not limited to: health, toileting, aggressive and/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance. We’ve used a Google spreadsheet to successfully track important factors for my son Leo for the past several years. A daily record of Leo’s important variables helps track and explain underlying patterns if and when things go awry — or go well. Because we keep Leo’s record online as a Google docs spreadsheet, it can be shared with his entire school and home program team, as well as with interested family and friends. Once a behavioral record has been set up, it takes only a few minutes each day to fill it out. An online behavioral record spreadsheet has been an invaluable tool…