Wednesday, January 14, 2015

Raising the Bar

A few years ago I attended a talk called 'Autism Across America" during the Family Cafe on Disabilities conference in Orlando.  The lecturer was a guy in his thirties with autism. He was clear on the point that he does not have Asperger's, he is autistic.

One morning that week I sat having my morning coffee while Daniel drank a Pediasure at the Cabana restaurant when the speaker (I've forgotten his name) joined us. We were outside next to the pool and the weather was just beginning to change from warm and bright to dark and windy. Daniel was covering his ears as he sometimes does. I asked Dan if the music playing overhead was bothering him, and the man immediately said, "It's the wind". After he said that, Daniel clapped and smiled. This is his most reliable way of saying yes. Our new friend added, "To an autistic person the sound of eyes blinking can be painful."

It surprised me when this man went on to tell me that Daniel reminded him of himself when he was young. He was there promoting a fiction series he'd written featuring an autistic main character, was he really once as severely affected as he was saying? True, his eye contact seemed a little forced, and his speech patterns weren't typical, but he was obviously very independent. I didn't see a strong connection between them. I've learned more and my understanding has evolved since then. It's not about levels of functioning, it's about similar ways of experiencing the world. It's knowing first hand just how sensitive one's senses can be.

Later that same summer Daniel was assessed by the physicians at CARD (Centers for Autism Related Disabilities). We'd often been asked if Daniel were autistic when out and about doing our thing. While grocery shopping, one of the cashiers told me that his brother was autistic and smiled at Dan. Things like that happened a lot, but I always considered his autism secondary to his microcephaly, as it is in Rett Syndrome. I was unclear about the significance of the label because I was told so many times that he is profoundly mentally handicapped. I didn't understand enough yet. The specialists at CARD made the diagnosis official when Dan was thirteen years old in 2012.

Many people with autism who have learned to communicate through pointing to letter boards or typing say that they were considered to have very low IQ's until they could write and express their thoughts. Even then they were doubted and sometimes totally discounted. They write about the intense difficulty of getting their bodies to do what their minds want them to, such as dressing and tying shoes, or even pointing to the correct answer when they fully know it. Our conference friend told me that he had to work very hard just to make eye contact and vary his speech patterns. For many years he didn't speak.

I talked with another adult autistic the summer of Daniel's diagnosis. William Stillman is author of several books including Autism and the God Connection. He gave me feedback about Daniel that encouraged me to go forward with teaching Daniel to point and type. He reinforced the need to treat Daniel in an age appropriate manner. No more baby type toys or shows (I had been already been preaching that for years). "Treat him like the teenage boy he is!" Stillman insisted, even telling me that it was time for "the talk" regarding his changing body. He was emphatic. "Daniel deserves to have the information he needs about what's happening to him. Don't talk about him, speak to him. Make sure the bar is raised in terms of respect."

A lot of teenagers with autism and other disabilities are treated as if they're much younger when they aren't able to talk, walk or use their hands to easily manipulate things. I always explain that Dan requires total assistance with all aspects of his daily life, but I don't believe I have the right to assign a baby or toddler age to him just because he needs those supports. He is sixteen years old, and he has that many years of experience under his belt. I believe he deserves credit for that.

Friday, December 26, 2014

Presuming Competence

It's the day after Christmas. One of my presents to Daniel was a book about butterflies. It's a science book that explains migration, metamorphosis and other information about butterfly life.

He didn't show a lot of enthusiasm during gift opening (later, the input on Facebook from other autistics, parents and Soma, the creator of Rapid Prompting, explained why this is. That's material for a future post). He seemed sad at lunch and wouldn't eat my sweet potato casserole, the one food that I can usually count on him enjoying. I was beginning to think he wasn't feeling well, but when we broke out the book on butterflies and used it for an RPM lesson, his demeanor immediately changed.

I talked about Rapid Prompting in my last post. It's a method for teaching that leads to communication. Today I read sections of the butterfly book to him, and followed up by writing and offering two answer choices from what we covered. He got nine out of ten right. He paid attention, smiled, and showed me that our quiet lesson time was good for him. And that's the point.

Some autistic kids who've been introduced to Rapid Prompting Method have eventually learned to spell well enough that they've written books. It's possible for a very high intelligence to be masked by motor planning difficulties and the inability to speak. If that were true for Daniel it would be remarkable and exciting. That's not the purpose, though. The goal is to teach him about the world and work with him to be able to communicate what he's learned. To ask questions. To share his viewpoint. I don't really know his developmental level. He's never been taught in such a way for us to know how much he's able to retain and understand. RPM is a way to find out. I don't care what his intelligence level is. I care deeply that he be given the chance to learn about the world as much he possibly can. My gut tells me that he understands everything, and Soma's teachings reinforce that belief. She tells us to presume competence.

Presuming competence doesn't mean that everyone with autism or other developmental disabilities is a hidden genius. It means that we don't give up and assume that because someone learns differently or expresses themselves in an alternate way that they don't understand what's going on around them. Reading what other people on the spectrum have to say about their experiences in school and out in the world helps me to provide the right type of lessons and stimulation for Daniel to learn and be taught respectfully. Presuming competence is about really listening to him and making sure that others in his life do too, especially educators. It gives him the chance to be taught at a higher level than ever before and learn ways to communicate what he's thinking and learning. It's not being fooled into believing he's not "all there" when he lays his head down instead of participating in noisy, overwhelming experiences.

So far he's shown me that he is excited to learn more than the basic concepts he's been hearing for years. When I read, he listens. He grabs the torn paper to make a choice when I've asked him a question about the material. It doesn't matter if he gets it right. When he answers incorrectly, it's a chance for more teaching. By not saying "no" when he chooses the wrong piece of paper, but instead going over the material again and giving another chance for feedback, the learning is positive and builds his confidence. It sends the message that I believe in him and his ability to learn.

Will he ever be able to point well enough to spell on the stencils or letterboard? Maybe. Maybe not. I'm learning that it doesn't matter. I hope that we get there. I am trying to desensitize his fingers with massage and repeated hand over hand practice. Some days he does better than others, but we haven't reached the point where he seems motivated to spell in that way. He prefers the paper choices right now, and the spelling apps on the iPad. That's ok. That's huge, actually. It may be a long time before he can spell, or it may happen in a flash after intense work. Perhaps we will stick with paper choices. I don't know how that will evolve, but I do know that he deserves a rich education. He needs books and lessons on things that interest him.

I get as excited as anyone would when I read about or see a video of a severely disabled person who has learned to type well enough to articulate very deep understanding. It does make me long for him to be able to use a keyboard. But if I settled for all or nothing, I'd soon give up on RPM. Fortunately, the books from HALO made it clear to me that learning is paramount. If all I ever do is read to him, discuss things with him, teach and give him a chance to offer feedback through choices written on paper, it  still opens his world much wider than it's ever been. It's too easy to leave him alone to stim with his objects of choice, like his shiny crinkle paper, and not engage with him. There's a time and place for those things, but they shouldn't be all of his life. Seeing his interest piqued by new subjects makes me too happy to ever stop offering him chances to learn. Last night we start reading Harry Potter and the Sorcerer's Stone, another of his Christmas presents that I wouldn't have considered if not for RPM. April in Austin can't come soon enough.

Saturday, November 29, 2014

Living and Learning

Each year since he entered the public school sytem at age three I've been asked the same question: "What are your educational goals for Daniel?" One of my answers is unchanging. Communication.

In 2004 the speech language therapist at Daniel's elementary school sent me a flyer about a workshop for kids with multiple disabilities. She went to the first session, I attended the second. The program, Every Move Counts, was thrilling to me. Finally, a substantial plan to help Daniel with communication.When I got back to town and touched base with the SLP I was over the moon with excitement. She, seeing how much work would need to go into the implementation of the program, was not. She basically said that the school would never be able to accomplish what EMC promised because it would be too much work. Too complicated. I was deflated, but not deterred.

I finished the workshops without the speech therapist's support, and pushed to have Daniel assessed by the EMC experts at the elementary school he was attending. When the creator of the program watched the videotape of the evaluation she said, "Daniel has the perfect assistive devices. His hands."

He points, he reaches, he grabs, he pushes away. He can snatch a glass of water from across a table. He doesn't use sign language because his fine motor skills and vision are poor, and he has motor planning challenges. Every Move Counts uses objects instead of pictures to help non-verbal kids make choices. I bought a miniature toy toilet. A tiny bed made for a dollhouse. It's shifting from one dimension to three. You get the idea.

For a lot of reasons, EMC never got off the ground for Daniel. His schools didn't use the method, and without their support, I was wailing in the wind. He continued with basic pictures (hard for him because of his vision impairment) and choice buttons for yes and no.

In 2010 I watched the documentary 'A Mother's Courage: Talking Back to Autism'. The film covers a lot of information about autism, including the Rapid Prompting Method. The genius of the program struck me hard right away. I bought the first manual and studied it. I didn't think I could afford to travel to Austin, Texas for a chance to work with the developer of the method, but I did believe I could do it on my own. I got another instructional book and watched a lot of videos to learn by observing.

I used some of the ideas in the textbooks. I added my own. We started doing spelling apps on the iPad. He is, pun intended, spellbound when we do this. I bought huge red and green YES NO buttons for him to use at home, and at school he began to do very well with his basic communication. Still, I needed to do more to get things off the ground in a meaningful way for him.

Last year I decided to schedule a camp in Texas for Daniel to work with Soma, the creator of Rapid Prompting. It fell through when there was a glitch with their online system (these sessions fill up fast), and it turned out to be a good thing I didn't get to reserve a spot because I got a cancer diagnosis and the surgeries and recovery time would have necessitated my cancelling. This year we're on. I've already booked a week in April for our camp at RPM headquarters.

Making a non-refundable down payment was a good thing for me. It helped me work harder at helping Daniel with the basics of the method so that he'll be ready to get going when we see Soma. We work at least a half an hour a day with making choices from two words on paper. I read the books again and ordered a third. The curriculum is brilliant. It's simple, but requires time and dedication. The only equipment I need is paper and pencil. I'm teaching him to spell, make choices and encouraging a sense of accomplishment to keep trying.

Soma's method recognizes that kids with neurological issues learn differently. You have to work around the repetitive actions known as stims, not try to eliminate them. Stims calm, or they distract a person from other things going on and become obsessive. They can assist with or block learning. She outlines how to address each kind of stim. Daniel puts his hands in his mouth. It calms him. I have never felt the need to force him to stop, although others have. This is where her professional opinion differs from most schools of thought. She suggests engaging a student's reasoning ability in order to distract from the stim. I find when we're going over a lesson the hand mouthing slowly stops without me saying a word or physically removing them. The interest he has in the subject, even though we're in a very basic stage right now, engages him completely.

I set up an account to help with the expenses of camp, and I'm deeply grateful to the family and friends who have helped so far. I believe that this is the education/communication piece I've been looking for all of his life in order to give him a voice. The fundraising link is here:

Once Daniel gets past the initial desensitization stage of learning what to do and how to do it (he's coming along well) the program focuses on real academics. He'll get the chance to learn about all subjects instead of focusing on how to feed himself, walk and make simple choices. We'll still do those things, because motor skills are important. They just won't be the centerpiece of his life anymore. Rapid Prompting's philosophy is to presume competence. Instead of seeing a person's deficits and working to fix them, let them learn. Teach them literature, science and math. Help them show you what they're capable of, even if their disabilities have always relegated them to the low functioning classrooms.

I want him to break out of that mold. If Dan is able to learn to point consistently and precisely (and he's almost there) we focus hard on spelling. While he's learning that he'll also learn about the lifecycle of a butterfly, or the names of the constellations. He's a sponge. Everything I've read and taught him since learning of RPM puts light in his eyes. It's not about grooming him for a career. It's about giving him the chance to learn and communicate. It's pretty basic, really, but it's more than many kids with profound differences are given. It opens up a world. Right now it's consuming my mind, and I will do whatever it takes to expand his.

Thursday, September 18, 2014

New Gig

I've been offered the opportunity to do a regular column over at Inner Tapestry. They've been around for thirteen years with a wide readership, but recently gave the publishing rights to The Heartflow Center in Maine. Heartglow benefits parents raising children with disabilities with the long-term goal of creating a respite center. Click the link above and read about them.

This will mean regular writing for me again. In the past, I've worked at a college magazine, done articles for the American Journal of Nursing and Nursing Magazine, blogged for the Edgar Cayce organization, interviewed parents for an online website geared towards microcephaly and published a book for ARE Press called Walking the Spiritual Walk. The book was written in 1994, and if I could do a sequel my core understandings would be different, but not drastically so. I also wrote in the book about my first marriage to Daniel's father, and I could devote more than a few chapters to the evolution and lessons from that relationship. I won't, though.

Instead, I'll move on with my good friends at Inner Tapestry and do a column as yet untitled that highlights the lives of parents raising children with disabilities. The premiere issue after the changing of hands will be available January 2015 and I'll link you up as soon as it's available. They plan to go completely digital and expand their readership globally.

If you'd like to be considered for an interview in one of the first six editions, email me me and we can talk.

Friday, June 13, 2014

Day by Day

It's  an early morning in June and I'm sitting in the dining room with Daniel. He's drinking water (he loves to drink, just hates eating) and playing with some large toy trucks on the table. I look out my window to the right at my flower garden. The plumbago are blooming blue and spreading, the orange and pink lantana are reaching tall. I feel content.

Now that the school year is over I can relax a little. This past year was full of unexpecteds, including my cancer diagnosis. If I'd have known what was ahead last August as I prepared myself for a fresh semester, I don't know if I'd have made it through the first day. Thankfully, I was blissfully ignorant of what would unfold. I don't think we're meant to know the future in that way. We are able to carry our load each day, not cram our backpack for all future hikes ahead of time. If I'd had to plan far in advance for two surgeries, two recoveries, and extended time unable to lift Daniel, I would have had bigger problems than just beating cancer. Anxiety would have kicked my butt. So here I am, past all of that.

Daniel is in the summer of his fifteenth year. I am amazed that he and I have managed so well for so long. Many years without any help at all. Several with me a single mom. I'm 52 and a little tired, but grateful that some help finally came in the way of personal care assistants a few years ago. We interview two new ones tomorrow.

My last post was in February, and it was prompted by the dream I had of YEARNING. I'm not entirely clear on what the dream reflected to me. I have some ideas, but there are probably multiple meanings that are correct. I do know that I am in a time of transition, and some of it is painful.

My oldest graduated one week ago. Daniel stayed with friends, because he doesn't handle lengthy periods of sitting quietly very well. Truth be told, sometimes he can't stand even ten minutes of restaurant time. Church is unbearable for him, but he loves the teacher in the Sunday school at our Unity services. She's a Reiki healer, and her presence calms him. I've finally learned to stop trying to force what isn't going to work, and relax into what does.

At the same time, my mind has been visiting  places I try to avoid. What if Daniel were a typical 15 year old? He'd have been there with us at the arena for graduation, posing in all of the family pictures afterwards. He'd have ordered something teenage boys like at the restaurant celebration, instead of drinking his meals and needing breaks by strolling outside while everyone else partied. Today we're home because of bad weather, and we've both battled boredom. Without his disability he'd be with friends, or watching something stupid on tv, or just reading and hanging out. Maybe he'd go the ten miles from our house to the beach to surf. Or maybe all of that is just a fantasty, and he'd really be in a drug rehab somewhere. See why I avoid these areas? The voice in my head has never been a reliable tour guide.

I wrote the first half of this yesterday, and now 24 hours later I'm in this chair looking at my garden again. Daniel is in the living room with the same toy trucks and a glass of Pediasure. We're waiting for a potential caregiver to come and interview. She's 30 minutes late. I feel calmer today. I hope Dan does too. He seems to. There's no groaning from that side of the room, and he's making his humming sounds that mean he's content.

In this life I've learned that I have to be able to change plans without too much annoyance. It only makes me surly. So, still no caregiver here. No returned texts. I've moved on to the next on my list. I think we'll make it to the pool later on after all. It's a beautiful day. No mournful yearning here at this moment. No backpacks full of tomorrow's gear.

Friday, February 14, 2014

Love and the Necessity of Hope

I dreamed about a love story just before waking today. The details are fading now, but there were two sisters and one man. He was remarkable. Strong, handsome, caring, spiritual, funny, absolutely perfect. In the end, he dies. The dream ended like a movie, with the credits running. The title of the dream/movie: Yearning. I woke up with that word in my head.

It was an interesting wee hours dream for Valentine's Day. It left me feeling very melancholy. Perfect love has died. Two sisters are heartbroken. Traditional dream interpretation tells me that the three are aspects of myself.

My energy is returning. I can lift Daniel again. I can eat just about everything, after a long period of only tolerating bland food. The depression is still lingering, though. I read once that depression is the impression left by fear. I was out of my mind with cancer-fueled fear and worry throughout November, December and January. It's going to take awhile to bounce back, and maybe I will be a different me when I land. Will my sister-self emerge, wounded but walking? Has my masculine side withered? I've always held it together, but now...

One of my students said to me today, "You're not the same since you came back." I asked how I'm different, and she said I'm not as cool. I'll second that. Sometimes the blues are uncool.

There are things to be grateful for. I'm thankful that I have insurance that paid for the majority of my surgery and hospital costs. Still, my 20% is raining on my plans for paying property and income taxes this year. I think financial fear ranks right up there with health scares. I also want to take Daniel to Austin, Texas this summer for a communication camp that uses the Rapid Prompting Method. It's not free, however, and I may not be able to make this happen. Do I put down a non-refundable deposit next month and trust that the rest will come? I am unsure. I was so excited about it just a few months ago.

A newsletter came yesterday from a holistic doctor in my area. She writes about the necessity of hope in regaining health. I know this to be true. Without a sense of hope and expectation, life feels flat. I've been fortunate enough to have always been able to rustle up some hope for the future. Lately, not so much. All I can do is try to be hopeful that I'll regain hope. I miss my optimism.

Last night in the middle of journaling about my sense of broken dreams, I did a gratitude list. Midway through the list of disappointments I was writing down, I realized I needed to switch gears. Next to the  negatives about money and loneliness, were my list of things that are good. I've also been saying 40 day prayers since the school year began. From Jesus' 40 days in the desert, 40 days of rain for Noah,  to the Israelites 40 years of wandering in the wilderness, this number is often in the spotlight. I'm putting my energy out there and affirming that specific things in my life are going to get better.

I see the results. My first prayer was focused on finding the right school/people/program/community for Daniel and our family. I always end the prayer with the caveat "according to Thy Will", because I know that I'm not in the know about all the options out there, and I might not have even conceived of the best for us, or what's needed for our growth. Not long into the prayer, our physical therapist told me that she's interested in a therapy school similar to the one in the corners of my mind. She connected me with a family who are also interested. Last week our caregiver went on an interview and met a mom who uses the Rapid Prompting Method that I've been researching and learning. I have her number.

There are interesting, positive connections happening, but still my hopes are not high. Not in this moment, anyway. To say they are just to avoid dark feelings would not be authentic, and wouldn't force a shift in my overall sense of well-being. I'm open to unexpected good. I want to believe. I'm willing for a change to come. I guess in times like these, that's all I can hope for.

Tuesday, December 17, 2013

Pow! Right between the eyes ~ Joe Walsh

My mom always urged me to take care of myself. When one of your kids has multiple specialists they see more than yearly, it's easy to let your own stuff wait. She reminded me that having Daniel makes it even more important Not to let things slide. She was, of course, righter than right.

I started bleeding right after the beginning of the school year. I'm a nurse who works in an elementary school diabetes clinic, and I know "my" kids blood sugar rhythms almost better than my own. So, I did not have time for this. I did not want to call in a sub. I told myself it was probably a hemorrhoid. The script my doc gave me for a colonoscopy had already expired, so I called for another, and figured I'd get it done over one of our breaks.

In late October I panicked. I freaked out a little, and the initial meeting with a GI specialist was scheduled, which resulted in a colonoscopy booked for November.

It's cancer.

I'm home now after major surgery last Thursday. There were some snafus, and I had to be operated on twice. Once on November 25, then again December 12. We're just waiting for the pathology reports now, but there is about a foot of my intestines gone.

I've never been prouder of my oldest girl. She is mini-me, only at least 1,000 x smarter. She, along with our caregiver, have taken care of Daniel so that Rich can focus mostly on me. God, I love that kid. Without her, I'd be pretty screwed right now.

And now, more than ever, my thoughts of a community are strong. We cannot do this alone. I've been taught that in a big way.

I have much more to say, but I'm groggy from medication. But damn, mom, I apologize for not listening to you. I will try to do better. No more putting things off or diagnosing myself. That's just really, really dumb.

Thanks for reading, whoever is out there.