Thursday, February 20, 2020

Moments




I make a smooth swift transfer, arms around my son’s chest and waist, as plops of rain turn to a steady soaking stream. He stays dry while I hurry to hoist his wheelchair into the deep recess of the mini-van’s rear storage area. In 2019 I'll finally buy an accessible van, but for now this works well.We both settle in our seats for the thirty-minute drive home, serene in the downpour. Me, soaked to the bone, but warm. He, humming quietly in the back seat.

Daniel watches the passing trees and buildings as water skims the windshield. We’ve taken many long road trips together since his birth in 1998. Over mountains, past rivers and lakes and through long stretches of flat interstate. He rarely makes a complaining noise during these times. When he’s bored at home he has a persistent moan that lets everyone know he’s unhappy. Traveling is a tranquilizer for us both. The rolling cadence of interstates winding through Georgia, Tennessee, Kentucky and into Illinois is one of his simple passions. Wheels on pavement.

By the time we reach home, Daniel is slumping in his seat. Our days begin early, and by nightfall his muscles are exhausted from the effort it takes to sit and walk. He’s been spared the tightness and spasticity that can come with cerebral palsy. His condition is a mystery, anyway, and his brain is structurally intact. No damage, just small. The medical term is microcephaly. It’s descriptive, not diagnostic. Many syndromes have microcephaly as a feature, but you wouldn’t necessarily know that because the named condition such as Down Syndrome or Rett Syndrome is used. Some people have small brains that function normally.

The rain is drizzling when I pull into the driveway, and he smiles as I lift him down into his chair and his thin hairy legs get a shower. We speed through the garage and into the house. He’s laughing as we race down the hall to his room. It’s too late for our usual evening routine of bath and shave, so I brush his teeth with the electric toothbrush and set him on his small commode, the one that allows his feet to touch the floor, and pull down the covers of his bed.

His signal for yes is usually clapping, but for this I ask “are you done? If you are, take my hands.” He smiles and reaches for me. I don’t know which chromosome may have a tiny piece missing, but I’ve been assured by The Geneticist, who is a brilliant man, that Daniel’s smaller than average brain is due to something within his genes and not to external causes. Whatever it is that made him non-verbal and physically disabled, it has resulted in a person who finds joy in very simple things like the presence of people he loves. Sometimes I wonder if it’s the result of lifetimes spent meditating and letting go of expectations and obsessions that he is content in his silence and circumstance. I hope so, and I’m grateful for it.

                                                                ~

While I was pregnant with him, I dreamed that my placenta was cancerous. When he was born with head measurements below the norm, all of the usual checks and tests were done, and my placenta was normal. I’m a registered nurse. Maybe the dream was a hormone driven fear image from one of my textbooks. Choriocarcinoma is the technical term for tumors in the placenta, the organ that feeds the fetus. I don’t know. I search my journals after his birth for signs that my body knew what was amiss. Dream fragments, thoughts and experiences hint at something, but it’s out of reach.

                                                        ~

During Daniel’s first year of life I craved my family. Living hundreds of miles from them bothered me from the time his sister was born a few years earlier, but when he came along the desire to be cushioned by the love of familiar faces was intense for me, so when he was 18 months old, we made the leap.

We set out with my father driving the mini-van.  “My name is Alice; my husband’s name is Albert. I live in Alabama and I sell automobiles,” I start the traveling alphabet game that we will play for many years to come on the 900-mile drive back and forth. We help Melody when it’s her turn. “How about Barbie?” I ask. She likes that. We giggle when grandpa says Barbie’s husband’s name is Bert, and play until we get tired and it’s time to pull over for a snack and diaper change for baby Dan. Melody is wearing a red and white striped turtleneck and a silky blue play skirt. She insisted. It’s humid and not particularly long sleeve weather, but she established a fashion sense and equally strong will at an early age.

My daughter’s baby dolls have seizures. They need medicine from a syringe three times a day. Sometimes they go into a hyperbaric oxygen chamber like the ones in her father’s office. I’m thankful that at least these plastic dolls are happy and their mother doesn’t come across as harried and angry.
After two days on the road punctuated by an overnight at a hotel, we pull into my parent’s driveway and practically run inside. 

Mom sets out iced tea and turkey and cheese sandwiches with watermelon. Her house smells of vanilla from the candles she likes to burn, and the smallness of the rooms make me feel snug and secure. I don’t know at the time that our stay will last only two years and I won’t be able to convince my husband to join us for a life there. I don’t know that in four years our marriage will dissolve.

Stepping out the back door to smell the grass as my neighbor mows, I am happy. There’s a lot of hope as I hold a tiny boy, barely ten pounds, in my arms. The familiar soft green grass of the adjacent yards brings back good memories of watching clouds while lying comfortably on their silky blades. Florida grass is thick and tough. I feel a rush of love. Later there are fireflies, something else we don’t see in North Florida. I videotape Melody and her Illinois best friend, Anna, as they chase them and huddle on the porch with bugs alight on their fingers.

I am expecting great things for all of us here. Daniel will be attending a new program called RISE-- Rural Infant Stimulation Environment--that I read about when I visited the previous year. The local paper ran a story about it my first day there, and I took it as a sign. I interviewed with the program’s director, and connected with a parent I knew from high school whose baby boy with Down Syndrome would be in the class. The idea was to do reverse inclusion by having typically developing kids attend as well. Daniel is registered to begin in the fall of 2000.

RISE gave my decision to relocate extra weight. It wasn’t just me who would benefit from extra hands. After all, who am I to put my needs at the top of the list?  This was for my son. Aren’t mothers supposed to be selfless and long-suffering?  No one twisted my arm to marry and move to Florida in the first place. Who was I to change the script now? It’s no one’s fault but centuries of conditioning and expectations that played on my mind like a skipping record, giving me guilt trips and reasons to justify my actions.

I can’t imagine that in two short years we’ll be loading up and moving back to our house in Ponte Vedra with it’s tall staircase that makes carrying Dan to bed more challenging.  I don’t envision life as a single mom.

                                                         ~

I roll Daniel close to me at the picnic table. I always enjoy the field trips to the zoo, so I’ve taken a day off from my job at the nursing home where I’m in charge of wound care, and gone along with his class. It’s 2009. We’ve been on a waitlist in Florida for services that will provide among other things, respite care. I’ve written and made calls to the Governor and my senators asking that they add funds to the medwaiver, but year after year I’m told that it’s just not available. Sorry.

A new boy and his mother are seated across from us. She tells me they’ve moved here recently from Wisconsin.  I ask her if she’s contacted the Agency for Persons with Disabilities yet to be added to the waitlist for services.

“My son is already on the waiver,” she says, smiling.  “We had excellent services in Wisconsin and when my ex-husband got transferred here he told the APD that we must have help. They advised us to use the crisis option. My ex has back issues. Nothing too serious, but he needs help lifting our son. He’s in his thirties and has the usual back problems.”

I’m breathing tiny little breaths from way up high near my throat. “What? We’ve been on a waitlist for eight years! Are you serious?” My anger rose like the tide and I didn’t know who to blame. The yearly letdowns when the budget was announced in July and we were passed over again, were beginning to condition me for disappointment, but now I just felt pissed.  Maybe anger was healthier for me. It did give me a game plan to work with, and after about a year of phone calls and doctor’s letters verifying my neck and back issues, Daniel was finally added to the Florida Medwaiver. We’d have help from strangers, some of whom would become friends.


                                                    ~

The only reality show I’ve ever gotten hooked on is about to begin. The husband and his four wives are sitting close on the brown couch where they narrate each week’s episode. I cuddle into my recliner with a glass of Chardonnay, cheese and crackers on the stand beside me. I am completely intrigued by the idea of living a communal life with other mothers. For me, a bunch of dads would be cool too.

While my mother was alive, she and dad were like an additional spouse for me. She cooks while I bathe my child who cannot move by himself. She stays home with my five-year-old, while my dad travels with me to the hospital where my Daniel is having an electroencephalogram of his brain to determine how many seizures he’s having. There was a feeling of support and interest in everything about our lives that made the hard parts so much easier.

In the first season the reality show family all lived together in one large home. Each of the three wives (a fourth was added at the end of that year) had her own separate section of the house with their own kitchens and living space. It fueled my fantasy of living life with other people who are raising kids with challenges. I’d watch the Browns helping each other and dream. One mother is home schooling so that the other two can work. One is better at organizing and cooking for large family dinners. I want this part of the arrangement. Pooled resources. Shared gifts. Love. Caring. Why does that have to be a fantasy?

Over the eight years that the show has aired, the family gets real about the problems they face. Jealousy, incompatibility between wives and all the other messy business of life together. It’s never idyllic. I really like these people. The women are strong, and their children independent. I don’t want to share   a man, but I still love the idea of community and sisterhood. So, while other middle-aged women are getting their envy on by watching one of the real housewives showcase a life of travel and expensive meals, I’m wishing for someone to do the laundry while I read to my son.

                                                   ~

I open Daniel’s drawer full of shorts and other summer clothes and pull out his bright blue and turquoise swimming trunks. “Hey, you wanna go to the pool? You want to swim today?” I ask him as he stretches on his bed, head on a soft pillow. He grins and claps because water means freedom for him. I love gliding through the silky water with him an arm’s reach away. The pools in our neighborhood are surrounded by trees, and we hang out in shady areas on the steamy hot days. It’s healing for us both.

In a few weeks I’ll be having a mastectomy. It's 2015. This is my second cancer in two years. Both are early stage malignancies. In each, the concern that frets me is getting back to normal post-surgery as quickly as possible so that I can lift Daniel. Many women opt for a double mastectomy to eliminate the necessity of having the unaffected breast removed at a future date. I’m worried about having both arms out of lifting commission. The plastic surgeon offers to use belly fat instead of an implant for reconstruction. Real tissue allows for weight gain and loss, and looks and feels more natural. He would also make the left breast smaller to match. I say yes until I start to think about the longer recovery period and additional chance of infection. I opt for the implant and don’t want anything done on the left side. I just want life to return to normal as quickly as possible. As it turns out, the chemotherapy impacts me much more than the surgeries anyway.

I’ve read that caregivers are more prone to disease. One study boils that down to life spans shortened by eight years. Peachy. Maybe that stat would improve if I had a passel of sister wives, and if not then I’d at least have moms at the ready if I’m not around anymore.

                                            ~

In the early afternoon Daniel is hungry. I place a small container of yogurt, a banana, a water, a milkshake and the applesauce jar in front of him. He’s been communicating with me with a consistent moan that he is ready to eat, and I want him to have choices rather than decide for him what he should have. Immediately he reaches for the yogurt and I move everything else away.
He’s so happy with just the simple pleasure of being fed bites of peach yogurt. My sweet, gentle boy. His entire life consists of being acted upon, rather than being able to make a decision and go with it. 

He’s gone down a lot of roads with me, trying to find a way for him to communicate more fully. He’s been patient as I try to help him read and spell. We’ve driven cross country to visit a non-traditional teacher of a method that helped her own autistic son to become fluent through writing. I’ve attended workshops, purchased letterboards and flip books with large letters in black and yellow to accommodate his vision impairment. I’m still hopeful, but I’m beginning to accept that he may never spell words that tell me how he really feels and what he wants. My heart holds out for the possibility that we will help him get to that place.

                                             ~

It’s raining hard again. We’re not driving, though, we’re high and dry in our living room. My daughter, Melody is stretched out in the recliner and Daniel and I are on opposite sides of our leather couch with dual recliners supporting us like hammocks. The sliding doors leading to the screened in porch are open, and we’re listening to raindrops on the tin roof. These two have grown up with meditation time. They both are usually up for silence only accentuated by the sounds of nature. We’re all tired, and after some quiet time we fall asleep.

Soon my daughter will be graduating college and moving out to start her life as an independent woman. She lives at home because her university is a short drive from our house. It saves money, and it gives an extra layer of support for Daniel and I. I’m trying to imagine what things will look like when she’s gone. It's 2018 and I’m 56 years old and trying to build enthusiasm for this season of life. Honestly, it’s hard to envision what’s around the bend. My daydreams include adding live-in help. Of course, this dream person is perfectly compatible with me and has a banging sense of humor. She cooks, likes to clean and organize, and her energy is off the charts. She understands Daniel and has inspired ideas for engaging  and making his life joyful. She’s trustworthy and kind, and she’ll live with us happily ever after. Sigh.

My ideal world expectations set the bar ridiculously high. In reality, there will be tradeoffs and deal breakers going forward. There are things we need I haven’t yet considered, and I need to practice letting go. Ten years ago I still believed that a communal life was possible for us. I don’t feel it anymore. Maybe I’m just worn by the journey and a new wind will blow that gives me energy for the last leg. Stay open, I tell myself. Don’t let yourself be swept to sea by the voices in your head that let the waves carry you under.

                                         ~

We’re up early. I look at the weather app on my phone, and it’s going to be 75 degrees today with low humidity. Spring in January, one of the major advantages to living in Florida. Once the yogurt, applesauce and chopped turkey with mayo are in his lunch bag, Daniel and I load up and hit the road for the zoo.

He’s never really paid attention to the animals when we come here. He loves being outside, though, and stares up at the trees and the sky in perfect contentment. There’s a short line for the train today, and the two of us don’t wait long before we’re seated comfortably on the larger car designed for wheelchairs. A soft wind occasionally passes over us while the sun keeps us warm. It would be pretty easy to drift off to sleep here.

The ride across the bridge from our house to the zoo; the gentle motion of his wheelchair as we make our rounds to see birds, butterflies, snakes, zebras, gorillas and tigers; and the rumbling of the train circling the entire perimeter all keep Daniel happy. He loves movement. I love giving him simple pleasures. This love makes it possible to keep going and hoping and carrying on. So we do.















                            








  




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:
http://www.gofundme.com/6nzvqg

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.