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.

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.

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.

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.

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.

Living Together

I've blogged about this a few times before, and it's still a burning desire. I want a commune!

There are a few lovely options for people with intellectual disabilities who are ready to move out and on with life. Noah's Ark in central Florida is one. They have an entire village that they compare to Mayberry of Andy Griffith fame. There are also the L'Arche communities sprinkled across the U.S. and world. There's Camphill, a living arrangement inspired by Waldorf Education and Rufolf Steiner. All of these are either for adults leaving home, or children living away from their parents.

My vision is a little different. I'd like to create a place where a few families can live out their days together with support, love and joy. I see my son at the center of it all, with perhaps one or two other families who have a child with disabilities also as a focal point. The remaining community would consist of people who choose to live a communal life. We would have similar values and a common purpose.

I've started researching the possibilities. I found people in my state who explored the option of creating a Camphill School in Florida, and learned of the specific roadblocks to founding new forms of living that are considered "separate". Be assured that there is a lot of bureaucratic rules that make it anything but simple if you want help from the state waiver.

If we're not building an assisted living arrangement, then we must still fall under the home and community umbrella of services. If two or three families choose to live together and invite others to share life with them, some of the red tape might be eliminated. I am still investigating and determining what the rules and regulations are.

The next step would be finding each other. I need people who are ready to live a life of unity where more than just one mother and dad are in charge. My happiest days of my life were spent when my parents and even my former husband's parents were involved in our daily lives (the latter had some inherent problems to deal with, but that's life). My mom is gone now. My dad is nearing 80, and he's moved on with his life. My father-in-law died a few months after my mother did, and the rest of the family is 990 miles away.

I don't want to just live next door or around the corner, I want to be committed and connected at a deep level and on the same plot of land. Houses could be separate, or perhaps one huge ranch. I'm giving this a lot of mental energy and prayer.

Sometimes I feel like it's just a dream. I'll flash on the fear that I'm envisioning a Utopia that cannot be. Most of the time, though, I'm serious about finding a way to make this happen. I want to take the best that L'Arche, Camphill and Noah's Ark have to offer and build a little community of my own. For Daniel. For myself. For anyone else who feels this burning in their heart to belong and to be supported.

Stay tuned.

Vulnerability

Daniel fell at school yesterday. He's fallen and been injured twice before. Once with his father while at the mall. That was a bad one with chipped, damaged and lost teeth. The incident was a culmination of some poor planning and unfortunate timing. One moment they were having fun, and the next he was flat on his face.

The second time was last year when my mom was dying and I was at her bedside in St. Louis. We're not even sure what the hell happened during that one, but apparently his caregiver dropped him in the bathroom and he lost his other (repaired after the first fall) front tooth. That event really made me angry. Partially because it was totally preventable according to the reports I later got, and mostly because I was 950 miles away and unable to do a damn thing about it. In one room my mom was on life support, and in another two plane rides away my boy was bleeding.

I remember getting the news while I was drinking coffee in the neuro ICU waiting room. I left, got on an elevator and railed at no one in particular. I cried and howled and when the elevator doors opened and a woman entered she asked me if I wanted her to call someone. If there was someone to call, I might have taken her up on it. In that moment I was exorcising my pain and helplessness, and there's no 911 for that.

Yesterday he was in the bathroom, standing as he always does, holding his teacher's hand to walk to his wheelchair. It happened fast. He slid. His back  hit the plastic on the toilet and down he went. There are several large scrapes across his spine.

His teacher called me and told me about the sequence of events and expressed how sorry she is. She's a great lady. Taught for several years and knows her kids and her job. She told me she cried when he fell, and he put his hand on her head to comfort her. It was an accident. It was a fluke.I reassured her that this stuff happens. I should know, I work in an elementary school clinic for a living. I'm the one with the ice and bandages. I understand that kids fall on playgrounds, they run and bump their heads on things because they're not looking, and it is a natural part of childhood to get cut and bruised.

Yes, I know that accidents happen. This one, once again, just reminds me of how vulnerable my son is because of his disability. I can be grateful that he wasn't part of a high school fight or car wreck after boozing, but I'm also sad that at almost 15 he is injured doing what most of us take for granted. Going to the toilet.

The real focus shouldn't be on me and my emotions. I accept that Daniel's limitations make this a real part of his/our lives. I got on with things and brainstormed about how to prevent it from happening again. His teacher and I discussed it. Should two people be in the bathroom with him? No, it's too small and he doesn't usually need that level of assistance. Should she stand in front of him instead of at his side? Maybe. We'll figure it out when he goes back to school tomorrow. Her genuine sorrow at his pain was reassuring to me. She wasn't being careless, and she cared in the aftermath very much.

Our kids who can't speak or walk without help are the most vulnerable on the planet. Last night I asked Daniel what happened, and how he felt. He tried answering. He was shaking his head no at some of my questions, but sometimes the no shake means yes. I brought out the big, lit YES NO buttons, and he threw them. I wanted so badly at that moment to be able to either read his mind, or  help him with facilitated communication on a keyboard. I could do neither. I think that all of my interrogating frustrated him and if he could have he'd have told me to leave him the hell alone. Well, I really shouldn't put words in his mouth, but the tossing of the YES NO buttons seemed a real attempt at that.

Daniel lives with his vulnerability. He seems to trust the world. He laughed and touched her face when his teacher cried. He smiled at me when I learned of his injury and came to him with a panicked expression and tone. He threw those buttons like a major league pitcher. Does he know some secret to the universe? Or does he just know how not to make a mountain out of a molehill?

I don't have the answers. I can only pray that in his vulnerability he is protected by people who care. I can ask that light and love surround him wherever he goes, and that the inept are kept far, far away from him. And I do.

A Life with Purpose

I did a bit of writing this summer, and the Association for Research and Enlightenment published the piece I wrote on Daniel's birth.

Here it is:

A Mother's Prayer

Changes

I'm in the year of firsts since my mom died. November 18 will mark the end of them, but right now I'm only three quarters of the way through. My emotions are up and down, but I'm mostly fine.That's what my mom would want.

Daniel is starting high school, and Melody will be a senior with dual enrollment college classes as part of her schedule. This is the first year that grandma isn't either shopping for new clothes with us or discussing sizes over the phone with me. I talk to her about these changes. Daniel has a mustache, and my first-born is applying to colleges and writing scholarship essays. Seems so recently yet so long ago that we drove out of our way for organic baby food for her, and deals on Pediasure for him.

Last night I sat on the porch feeling like I hadn't really done much this summer. So, I wrote down in my journal everything that we managed to cross off the list, and it was pretty long. My summer photo album is filled with photos in various doctor's offices. Melody had her wisdom teeth removed, Daniel had multiple x-rays and specialist follow-ups. I had my yearly exams (oh joy) and labs done, too. In case it sounds like everything we did revolved around medical maintenance, I have to add that we swam a lot and Rich and I had two nights alone beachfront at a place only an hour from home.

Since we didn't make our usual drive to Illinois to be with my parents and family, summer did feel a little small at times. I did venture out of my usual routines a little, though.  I started attending the Unity Church that's only five minutes from our home. That first morning I almost didn't go in. It's in a pretty non-descript strip mall, and while I sat in the parking lot I imagined all sorts of negative things about the interior. On the phone, my daughter told me to just go in. I did.

One side of the room is filled with candles. There are sofas and chairs when you enter. The guitarist writes her own music, and it's beautiful. I needed to be back home in a church where meditation is a huge part of the experience. Unity fits the bill, and I'm very glad I opened that door.

I  met a family after the service who moved here a few weeks earlier. Their daughter Angela has Down Syndrome. As we talked, I found out that Angela and Daniel are newly enrolled at the same school. During the summer school session I saw her each morning when I dropped him off. Last Sunday her parents mentioned that they have no family here, no waiver services, and no one to they can trust to spend time with her while they catch a movie or get out alone for awhile. I extended an open invitation to come to our house, and gave them my Facebook info. We're hooked up now.

I know that one thing my mom wanted for me was the support of good friends. She understood my hermit ways, and knew (knows) how it doesn't come easily for me to reach out. I feel her nudging me and helping me with this aspect of my life. I know she's still my co-pilot when I need her. I don't want to hold her back from her journey with the grief I feel here on earth, but this is, after all, the first year.

Summer is over. I'll be going back to my job as a school diabetes nurse tomorrow. The kids will enter new phases in their lives. And just before Thanksgiving 2013, we'll mark one year since we said goodbye to my mother. I can feel the changes, and it's ok. Sad sometimes, but really ok.

Grief and Gratitude

It's summer. I'm thankful for the job the school district offered me three years ago that allows me to spend it at home with my kids. I'm a ten month employee, so we have to watch our pennies, but it's working.

My oldest is volunteering at a Waldorf camp for preschoolers. We were part of the original school initiative from the time she was a few  months old until I was pregnant with Daniel. There's another volunteer just a year younger than her who was a member of the playgroup we attended all those years ago. I have pictures of the two of them at a birthday party sixteen years ago. We lost touch with the group shortly afterwards, so reconnecting is a pleasant surprise.

A Waldorf school is a magical place, with lots of color and craft and an emphasis on imaginative play. The lead teacher at the camp also happens to be a former special education teacher. My daughter has found her mentor, and I couldn't be happier. She's experiencing a different way of educating first-hand. There's no yelling, no time-outs, no harshness at all. Discipline is gentle, the rhythm is calm. There's a centered happiness about the days.

This is our first summer without my mom. Usually we drive to Illinois to spend time with the whole family at some point. Next month Daniel begins summer school, and he just started physical and occupational therapy with two therapists who make the "work" fun. At home we're spending a lot of time in the pool with the new neck ring that gives him complete freedom to move.

I'm not sure if we're up to making the drive north just yet. If August comes and it seems like the right thing to do, we'll pack up and go. For now, I need time to grieve and adjust. Last August I wrote on this blog that I was glad that the difficult days of my husband Rich's illness were over, and that I felt optimistic and happy. Two months later my mom was fighting for her life. I wrote about how quickly things can change. Little did I know.

When my mom died last November I lost my best friend. I'm struggling. It's hard for me to reach out, but I've been doing it. In some cases I've been pleasantly surprised and heartened. In others, not so much. I'm trying, though. I know that I need to build that support system I've talked about for so long.

I'm grateful that my daughter is fully immersed in her job this summer with the little ones. The time spent singing, painting and swimming in the ocean is healing. I'm also thankful for Daniel's new therapists who are just a two minute drive from our home, and for swim rings and pools he can be free in. I am grateful for good friends who get me, and for family that love me.

As a fellow nurse I worked with several years ago liked to say with enthusiasm as we made our way out onto the unit to start our day, "onward and upward!" That's the direction I'm headed.

Prayer

The following was written by  fellow-blogger, Claire, at  Life With a Severely Disabled Child
I believe it captures the truth of this life quite well. It's one of those that hangs on my refrigerator as a reminder.

In this moment I accept that I have been given care of a very fragile person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.

I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.

I open myself up to the possibility of joy, of fulfillment, and of grace.
I accept that, in this moment, it is all I can do.

~Claire Roy

Good Things

We kicked off Memorial Day weekend by giving Daniel's new neck ring a try. We have a winner! He was able to move around the pool independently, something he loves. After about an hour and a half he crashed on the porch for a long nap stretched out on a comfy chair. It was good.

I've tried something new for the pool every year for the past several, and this ring was recommended by a good friend who uses it with both her girls who have severe disabilites. To say it's a godsend is really an understatement. The feeling of freedom he has in the water is worth every penny I paid for it, and it was a lot less expensive than the big yellow contraption I bought last year that didn't pan out well.

With his sister trying the new neck ring for the first time

In other news, we have a new physical therapist and a state-of-the-art hydaulic stander on the way. This is a pic of he and I after school/work Friday evening trying it out. This doesn't capture the huge smile that he had when he first stood in it, but believe me, the boy loves it.



Physical Therapy on a Friday in May


We're counting down the days until break (June 7 is our last day) and taking note of all these blessings, too. Here's to summer!

Sorrow Makes Us All Children Again ~ Ralph Waldo Emerson

I guess that's why when I think of my mom, I don't remember recent events as much as things from grade school. Yesterday on the drive home from work,  a memory of myself at age ten appeared in my head as clear as a videotape. 1972, the long "maxi" dress she'd bought me that made me so happy. Fleeting, happy images.

Last night when I did my meditation, I couldn't quiet my mind. Vivid scenes of her taking me to Fairview Plaza to shop at the dime store clicked on instead. We've made that trip hundreds of times. I kissed her wedding rings that I'm wearing, and blessed her and myself. Then I cried, and tried again to still my inner chatter. Success denied. I could only see her cooking dinner while I watched Mary Tyler Moore reruns in the living room.

If mourning means I'm a little girl for awhile, I will just have to roll with it. For most of the day I'm Nurse Carolyn, taking care of the kids with diabetes at the elementary school where I work. When I walk down the halls, though, I want to call home and ask mom to pick me up because I'm sick.

Drifting

Lately my mind drifts to the seventies quite often. Grade school. Book bags. My mom at home. When I think of her, the memories of those days are strong.

I'm a child. I am happy in my introverted way. I read, sit under a desk and hum or write poems and songs in my head. Out in the world, I am sometimes overwhelmed with self-consciousness.

But at home I am calm. I love the rhythm of life in our little house. Sharing a room with two brothers. One bathroom for five of us. Fried chicken and mashed potatoes are on the table at least once a week. Television and music are our usual pastimes.

There is church. Northwest Christian. My best friend, Joyce, a sweet soul to this day. Camp at Little Galilee Christian Assembly in Clinton, Illinois in the summer. Kumbaya by the campfire.

There is also metaphysics. Many Mansions by Gina Cerminella. There is a River, the story of Edgar Cayce. I read them both in fourth grade.

I lie in the grass in the summer and look at clouds. I swim in a backyard pool with my good friend, Judy. We eat fresh blackberries from a bush near Garman Park on our way to lazy afternoons doing crafts at the big cement tables.

I'm drifting. My mind, my heart and my spirit. 

Thoughts on grieving

It's the little things you miss the most.

My mom always made sure Daniel had a blanket over his legs if it were cold out during a walk. At night, tucked into bed, she would check him multiple times to be sure he was covered, head comfortably placed on his pillow.

When we went out for dinner together, it was my mom who never forgot to bring extra of everything for him. Bandanas, toys, cups, water, clothing or a jacket. When it was time to line up at the buffet for food, she stayed behind with him allowing the rest of us to fill our plates first.

During visits to my parent's home in Illinois, when the rest of the family would gather for a barbeque or celebration, she was the first to volunteer to hold him or walk with him when he would fuss. She did this for thirteen and a half years.

We lived together from 2000 to 2002 when he was between the ages of one and three. After dinner, she refused my help with the dishes saying, "you just take care of Daniel." I worked a part-time job during those years, and she was my constant back-up with both of my kids.

Every new school year she shopped with me during my summer visit and bought clothes for the kids. Throughout the year, she sent boxes of clothes and toys for Daniel. She knew what he liked the most, and was always on the look-out for a squishy toy or a little car.

When I think about it, those little things are really the big things.

Making a Better Life

I am finally taking the leap from the waiver that we've been receiving services through for almost two years to the 'Consumer-Directed Care Plus' option. This will put me in charge of monthly budgeting, timesheets, hiring, training, and purchasing for Daniel. It means far more flexibility in terms of getting people on board to assist him. I'll no longer be required to use an agency or an APD employee. I can hire family, friends, or whoever else I choose.

Since I have no family in Florida, and no friends that can act as assistants for Daniel, I'll be hiring people I don't know. My add on Care.com is  entitled, "Energetic, Happy Caregiver Needed". I've had too many blah, tired, uninspired workers through the agency these past nine months since losing our first full-time care provider. We had one who was outstanding, but her last shift was Sunday. She's moving to Virginia and we'll miss her terribly. She was the epitome of happy energy. From the moment she walked through the door until she left each Sunday, she was tuned in and focused on Daniel. She truly loved spending time with him, and she was good for all of us.

My goal for 2013 is more activity and more fun for Daniel. In his nearly 14 years on earth, it has been mostly me, my parents and daughter who take him everywhere and include him as much as possible. For the past year this has dwindled. It just feels like too much work at times, and he doesn't act happy when we drag him to church or restaurants. Sometimes going out to eat is good for him, but usually it's not. This means that one of us stays behind with him at home while the others do their thing. We're not as fired up about day trips anymore, either. Burn out. It's in the house.

I want to enable him to do the things that HE enjoys on a more regular basis. He loves to be outside. Right now we are constrained because the agency workers are not allowed to take him anywhere by car. If we find the right people, trips to the park and the beach will be much more frequent.  We live in the sunshine state, and the big advantage to that is being able to give him the out of doors. It doesn't happen enough when you're tired from being the only one on board.

So. Big hopes for changes that will make life better. That's my Christmas/New Year's wish.

For Mom, With Love

We buried my mom on Saturday, two days after Thanksgiving, twenty-two days after she started seizing in the hospital following a very confusing illness.

Most of her close family were with her the day she died. My dad, my brothers and I, both daughters-in-law, half of her grandchildren, her sister and brother and their spouses. We all gathered at Barnes Hospital in St. Louis, where she’d been flown by helicopter a week and half earlier from a hospital in her hometown in Decatur, Illinois.

I arrived in Illinois the evening before the transfer. Her seizures were about twenty minutes apart. She was sedated, but I was angry that enough meds weren’t given to knock them out. She was on a vent, after all, so there was no danger of depressing her respirations. In St. Louis they did manage to stop them within hours of admission, but she never really woke up.

My mom was healthy. She went to Branson, Missouri in early October with my dad for a mini vacation. We thought the illness she experienced when they got back was due to the hamburger she ate on the way home. Both she and my dad didn’t feel well after eating that night, but she was very sick. Next, it appeared her gallbladder needed to come out, and it did. The surgeon was puzzled at her labs and her overall clinical picture.

Her kidneys failed, her platelets dropped. She underwent numerous plasma exchanges. She believed she was going to die, and made peace with God and talked things over with my dad. I thought she was overreacting and would get well in time. In the back of my mind, though, was the overwhelming feeling of just this thing happening that I had when I was visiting them in July.

I was lying in bed and started to cry. The thought of losing her was strong. Awhile later she came into the room and told me to get up because my dad was having chest pain. My first thought was that my intuition was confused and it was he that was in danger. Turns out he was fine, just having some heartburn.

My dad and I stayed near the hospital in St. Louis the entire time she was there at Barnes Lodge, a place for families. I’ll never forget the unity of purpose that we shared. I love my father so much. He is truly my hero, as corny as that sounds. He is full of optimism, love and grace. His love for my mom will be in my mind and heart forever.

This past week my family gathered together. I feel so lucky to be a part of them. My brothers and their wives, my nephews, and my aunts and uncles are all such great people. Truly. My mom must be thrilled to know that over 200 people came to her visitation, and her funeral was beautiful. My nephew gave a eulogy, and the minister read my tribute to her (I have a horrible fear of public speaking. I’d rather be in the casket than at the podium!)

Tim talked about golf and how she always worked on her short game, making the putts and getting her score right up there because of it. That’s how she supported us, too. She put in the time behind the scenes doing the small things that made a big difference. I know she was listening and probably beaming that her grandson gave her such kudos for being the quiet woman she was in this life. We’re who we are because of her.

It hasn’t really sunk in yet for me. I know that the days ahead will be tough for all of us, and I hate being down here in Florida while the family is 950 miles north of me. I hope my dad decides to spend some of the cold months here with us. It’s up to him and whatever he feels will be most helpful to his healing.

My mom and dad adore Daniel. I am so grateful that her example of caring for him has really affected Melody. She took care of her brother while I was gone (with the help of assistants and Rich). The Thursday before mom died Daniel fell while the caregiver had him in the bathroom. He lost his other permanent front tooth. I’m still unclear about how it happened, and I haven’t had time to look into the details other than to know the person responsible was apparently not strong enough for the job.

Melody took over and showered him with love, hovering over him until I flew back to Jacksonville. We all drove back to Illinois together, and she continued to care for him and for my dad. She made sure her grandma’s kitchen was as pristine as she always kept it. Again, I know my mom is proud. I am.

I feel my mom’s presence, and I am thankful that I have a completely secure belief that her soul is still with is. I don’t know how people get through it without that knowledge and faith.

Thank you, mom, for being you. I love you.



Christmas, 2011



Intuition

My son is non-verbal. I've been trying for years to find the right communication system for him, but to date the best indicator of  what he wants to say is his body language. He reaches, pushes things away, claps when the answer is yes, and gives  looks to kill when he's annoyed. He also uses his eyes.

Nearly every morning when I go into his room and wake him, he smiles. His big brown eyes light up, and I know he's happy.

Communicating with someone who cannot speak is one way to fine tune your intuition. Since Daniel can't say or type what he feels or needs, it is a necessity to read his eyes and body language. Sometimes it goes beyond just picking up on non-verbal cues and going with gut instinct.

I find that when I can really slow down and observe patiently, I get it more often than not. Sharing thoughts and emotions in the absence of spoken language is an art. There are cues I use when I need to figure out what Daniel wants me to know.

He covers his face with his hands when he's embarrassed. He has a low grade cry when he's bored or unhappy. His heartbeat speeds up if he is in pain or hungry. There's a very specific growl he uses when he's angry that we're not picking up on what he wants us to know.

Sometimes I tune in on another level. Once when he was staying with his father overnight (years ago, before those visits ended) I woke up dreaming that he was being injected with a needle. Minutes later I got a call saying he was having a seizure, and his father gave him IM valium.

I've been able on occasion to sit with him when he's sick and just quietly "listen" for signals from my own body to let me know where he hurts or what the trouble is. I once felt throat pain very briefly, and it turned out after a trip to the peds office that he had a virus that included a sore throat. This is a technique I want to develop. If I can get a sense of where the problem is, I can be of more help to him.

I haven't given up on communication goals. We're hoping for a new school placement that's going to support us more in helping him with the iPad and other techniques. That should happen soon if the district cooperates. In the meantime, I'm listening.

The Heart of it All

Last Thursday Daniel and I had dinner in one of the homes at our local L'Arche. It's a place where people with intellectual and physical disabilites live in community with the help of assistants. We shared vegetarian chili and cornbread with a group of about 12 in the Peace House. As a child of the sixties, everything about this scene appeals to me.

L'Arche is a revolutionary way of thinking and living. Jean Vanier started the movement in France when he opened his home to two men with disabilities in 1964. They were institutionalized at an early age, and when Vanier saw the conditions they were living in, he decided to do something. It's grown steadily over the years throughout Europe and North America. There are 17 L'Arche communites in the U.S. right now, with 3 more in the process of being up and running.

As a young man, Vanier did his doctoral thesis on Aristotle with a focus on happiness. His research boiled down to a very simple conclusion. The secret to happiness? Loving and being loved. That's the mindset that L'Arche grew from. From the International Charter:

"L'Arche exists to strengthen our local communities, welcome more people into our life and work, engage in advocacy on behalf of those often on the margins of society, and to raise awareness of the gifts of persons with intellectual disabilities."

"You may have a spiritual resonance with L'Arche's vision of mutuality and solidarity with persons who are marginalized, a desire to immerse youself in community, or a sense that there must be something more to life."

Peace House

Daniel

Welcome

One of the gardens

The backyard between houses

L'Arche is radical. It's radical in insisting that money, prestige, career, intelligence and all of the other things that we usually associate with success are not what make us happy. There's a different mindset in the L'Arche world. The prevailing philosophy doesn't glamourize disability, but accepts it as part of life, part of being human. Our IQ score isn't what counts. What brings us happiness is loving relationships.

It's been over a year since Daniel and I were there, and I was surprised that people remembered us. By name, no less! Sister Rita held his hand during songs and prayer at a service before dinner. She spoke to him, not about him. The same thing happened again and again. No pity, just welcoming and appreciation.

I came home from work very tired that Thursday, and I had to talk myself into going. I am not naturally social, and it took effort to go and not slip out before dinner. I kept up a steady internal pep talk that went, "Stop thinking about yourself. Relax into this. Just observe and be open." I'm glad that I did.

It's important for me to be close to people who view life this way. I need to cultivate friendships with those who believe that everyone has something to share and a purpose in being alive. I have a group of close female friends scattered across the country who choose to view their kid's disability as a part of life and not a tragedy. We started as a Yahoo group, and eventually moved to Facebook. We keep journals that circle the states so each of us can contribute. We've consciously decided to share a perspective that takes things in stride, including seizures and surgeries. We met online in the late nineties when our kids were babies. One of my closest friends in the group moved to my city in 2004.

We need people who nurture us on this path. I've written before in this blog about my deep desire to have a community where families can live in houses close to one another and share the life of raising children and caring for adult kids with disabilities. Since that's not possible right now, I need to approximate the emotional and physical support to the degree that I am able.

I love waking up to my son everyday. I don't ever want him to live elsewhere. I realize that I'm getting older, my back is getting weaker, and the natural order of things is for children to outlive their parents. If that day comes, I pray that the L'Arche model is more common. That it is the rule, not the exception.

For now I just need to do my part.



Extreme Parenting: Messages in a Video

A friend I met when I started this blog just over a year ago recently sent out an invitation. She's a prolific writer over at a moon, worn as if it had been a shell.

She said:

"For the last two years I've said here and elsewhere that I'm going to make a video of still photos of YOU, parents of children with special healthcare needs and your wise words to yourself, THE DAY BEFORE YOU KNEW YOUR CHILD'S DIAGNOSIS. These words can be simple, complex, dark, light, positive, negative, funny, serious or everything all at once. I'm going to set the photos to music and hope it'll be helpful to new parents as well as inspiring. I imagine it'll be a healing testament for all of us."

These are our messages in a bottle. Very well done, Elizabeth! Thanks for giving me the opportunity to join in!