The Self-Advocate/Parent Dialogues, Day Five: Robert Rummel-Hudson

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability. Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over.  Dialogues Day One: Zoe Dialogues Day Two: Robert Rummel-Hudson Dialogues Day Three: Ari Ne’eman Dialogues Day Four: Zoe Robert Rummel-Hudson has the floor again today. All the participants — writers and commenters — have our gratitude. Not every exchange has led to greater understanding, but many did, and that could not have happened without you. -The Editors —-  The world is…

The Self-Advocate/Parent Dialogues, Day Four: Zoe

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability. Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over. Dialogues Day One: Zoe Dialogues Day Two: Robert Rummel-Hudson Dialogues Day Three: Ari Ne’eman Zoe has the floor again today. -The Editors —- Dear Robert, In your letter on Tuesday, you were adamant that parents have a place in the disability rights movement. I want to begin by letting you know that we are in vehement agreement on this point: in…

The Self-Advocate/Parent Dialogues, Day Three: Ari Ne’eman

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability, and autism. Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over. Zoe went first Robert Rummel-Hudson responded Today’s post, the third in the series, is from Ari Ne’eman. Ari participated in the discussions surrounding Rob’s and Zoe’s original posts, was instrumental in getting these Dialogues to happen, and suggested the format they ultimately took. -The Editors —- Dear Robert, First, let me say that I’m glad we’re having this dialogue,…

The Self-Advocate/Parent Dialogues, Day Two: Robert Rummel-Hudson

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals. Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have…

The Self-Advocate/Parent Dialogues, Day One: Zoe

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals. Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have…

But I Don’t Know What to SAY!

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…

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iPads: Near-Miracles for Kids With Autism

Shannon Des Roches Rosa with Robert Rummel-Hudson www.squidalicious.com www.schuylersmonsterblog.com My son Leo’s life was transformed when a five-dollar raffle ticket turned into a brand-new iPad. I’m not exaggerating. Before the iPad, Leo’s autism made him dependent on others for entertainment, play, learning, and communication. With the iPad, Leo electrifies the air around him with independence and daily new skills. People who know Leo are amazed when they see this new boy rocking that iPad. I’m impressed, too, especially when our aggressively food-obsessed boy chooses to play with his iPad rather than eat. I don’t usually dabble in miracle-speak, but I may erect a tiny altar to Steve Jobs in the corner of our living room. Irony: We hadn’t even considered getting Leo an iPad. They seemed awkward and fragile to me, with oversized touch screens that looked as vulnerable as a hermit crab’s exposed backside. I felt more comfortable with…

A Short Cut for Making PECS-Style Icons

Jennifer Johnson What are some of your short cuts? -Editors My son’s ABA therapy provider started my son on PECS (Picture Exchange Communication System, an icon-based “functional method of communication” for people with verbal or motor communication challenges) when he was about 18 months old. I wanted to make the PECS myself so that we could have them all look them same whether they were for an ABA session, or for choices for snacks. So, I took photos and cropped each one, sized them, printed them out, etc.  It took me hours to make just a few of them, and I wondered how on earth I would be able to keep it up at that pace. Then I spoke to another of my son’s therapists, who like me had a son with ASD, and she shared a clever time-saving method that I want to pass along. Suggested Materials: Digital camera…

What a Great Speech-Language Pathologist Can Do for Your Child With Autism

Jordan Sadler, MS, CCC-SLP www.communicationtherapy.net When your child is diagnosed with autism, one of the first professionals you will need on your child’s team is a high quality speech-language pathologist (SLP). This is because challenges in communicating and relating are core features of the diagnosis, and improvement in this area will make a tremendous difference in a child’s — and family’s — life. For many children with autism spectrum disorders (ASD), the speech-language pathologist is the cornerstone of the therapeutic team. A speech-language pathologist may also be referred to as a “speech therapist” or the more descriptive “communication therapist.” Whatever the title, parents will want to be sure their child’s therapist is licensed by the state and certified by the American Speech-Language-Hearing Association. Furthermore, be sure to work with a practitioner who has extensive training and experience in the field of autism, and don’t be afraid to ask the therapist…