Tuesday, October 22, 2013

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.

Thursday, September 26, 2013


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.

Friday, August 30, 2013

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:

Wednesday, August 14, 2013


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.

Tuesday, June 25, 2013

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.

Wednesday, May 29, 2013


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

Sunday, May 26, 2013

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!

Friday, May 3, 2013

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.

Thursday, April 25, 2013


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. 

Friday, April 5, 2013

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.

Thursday, December 13, 2012

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.

Tuesday, November 27, 2012

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

Tuesday, October 30, 2012


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.

Saturday, September 8, 2012

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


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.

Saturday, September 1, 2012

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!

Saturday, August 18, 2012

And So It Goes

It's Saturday morning. I worked two days this week, getting the clinic ready for the new school year. Daniel's backpack is filled for Monday and the beginning of eighth grade. Melody has her driver's license and will be driving herself to and from school, appointments, lessons and all that jazz. Dang. We're all growing up!

I have a newly diagnosed student with diabetes this year. I met his mom and dad and like the rest of the parents in this little diabetes clinic I get the privilege of working in, they are great folks. I'm so thankful for this job. For the chance to be with elementary school kids everyday. For the added plus of being home when my kids are off from school. This September will mark thirty years as a nurse. I'm down on my knees grateful that I don't have to work weekends, holidays, or odd shifts anymore!

Our summer was free of drama. We drove to Illinois, myself and my kids, and spent time with the whole Kresse clan. It was very, very good.

I just feel like blowing some sunshine around today. The past year with all of it's woes is over. My husband finished radiation, chemo and all of that nerve crunching medical stuff. He's ok. We lost his dad almost a year ago, and had to find a secure place for his mom to live in safely now that he's gone. I needed more than my share of Immodium last year. There were too many tears, too much fear.

Yep, I'm marking the current good vibes by writing on this, my blog, so that when the tide turns again I will remember. I'll come here and read and go, "Yeah, this too shall pass." Uncle Ebb and Aunt Flow never sleep. I'll just enjoy today.

Monday, July 30, 2012

Shifting Gears

Summer break is winding down. In a couple of  days it will be August, the Sunday of summer.(Someone once said that if summer is a weekend, then June is Friday and July Saturday. Seems pretty accurate to me.)

I'm not ready to go back to the daily grind yet. We still have doctor's appointments to cross off the to-do list. This morning was Daniel's well check, and Thursday is one for me. Next week are a few more, including a four hour EEG. It's just the last of the "get it done before school starts" necessary stops. I also want to just savor the morning sleep-ins awhile longer.

We have to wait until September for the team meeting with Daniel's teachers and therapists to discuss the autism diagnosis and plan for the year's education goals. Communication. So many years into it, and still the necessary push to make it more meaningful for Daniel.

We're plugging away on the iPad, working on letters and spelling phonetically. I'm pretty sure the current placement at school is not going to understand my focus in this area. I don't care. I know my son, and I am certain that he needs more of a challenge.

He's walking well. I've been making him walk more out of necessity. My shoulder and back demand it. He's taller, heavier, and I'm older and more aware of my limitations. I've switched to a pair of AFOs that were made for him awhile ago that have more flexibility. Unfortunately, we just got the new pair that are the old ski boot model, and I don't think they're working well. It looks like I need to add another appointment to the list and have them redone.

He's also feeding himself more. His diet is mostly liquid, so in our world that means he's holding his cup and drinking without me holding it. He's also suddenly showing more of an interest in food. That's good, except when his hand mouthing habit and eating intersect. The guacamole he dug so much at the Mexican restaurant we stopped in on the drive home from Illinois was case in point. Slimy green hands are no fun in public!

Daniel begins  eighth grade in just a few short weeks. I'm going to try to enjoy this last bit of summer in between the obligatory doc visits and school supply shopping trips. Tonight we'll walk around the neighborhood when it cools down. I want to enjoy every last second before the alarm clock again rules our mornings.

Wednesday, July 18, 2012

Summertime in the Heartland

Grandpa and Daniel just a swingin'.

Sister is a future teacher. She's got the look!

Party at Uncle Mike's house!

Mom, Daniel and Melody

A few of the cousins at grandma and grandpa's house

Wednesday, June 27, 2012

Formal Diagnosis, and with it...decisions

We saw the developmental pediatrician at CARD (Center for Autism and Related Disorders) last week and he did a very thorough assessment of Dan. When he was five our geneticist wrote that he "fits the behaviors consistent with autism". We didn't really run with that, though. Now we have a formal autism diagnosis from a specialist in that area.

What now?

For years I've struggled with the school system over communication services for Daniel. In 2004 I attended workshops that the school SLP suggested to learn Every Move Counts, a program for kids with severe disabilities. I was on board. It's a long somewhat tedious story, but in the end, the school was not able to implement the program (the SLP who originally suggested it nixed it shortly after being the one to get me interested. Thanks.)  Every year I've had the same conversations, the same fruitless efforts to have his daily school life include hard hitting communication work.

So, now he has a diagnosis that's characterized as a language disorder. Me thinks they must step up to the plate.

Is a setting that's geared towards autism going to work for him? ABA is the gold standard. I've thought about the rewards that motivate Daniel. He doesn't like food. Praise? Sort of. Plus I've read a lot of books over the years by people with autism who are not happy with their early ABA training.

I tend to be attracted to the methods that aren't mainstream. Facilitated communication is one of them. I've been helping Daniel at home with a letter board and his ipad by supporting his arm so that he can point effectively. It's slow going, but it's working. I saw a documentary and read the book on Rapid Prompting, and I like the ideas the author presents. I don't do the paper tearing, but I present Daniel with two objects, tell him what they are, then ask him to point to the appropriate answer. Example: "This is an orange. This is a pencil. Now, show me the pencil." You get the idea. I just want to know how well he can answer correctly. I don't want to insult or bore him, though, and I've told him as much.

In August I'll meet with "The Team." Teachers, therapists, psychologist, etc. I have to be clear and sure about what I want for Daniel, and I'm not there yet. I'm using this time when both of us are off for the summer to get clear...or at least clearer.

Yesterday my daughter worked with him on identifying letters. He responds well to her because she's stricter with him than I am (she wants to be a teacher, and she's the granddaughter of a very good one. I think she has the touch.). The choice of teacher in the new year is going to be critical, but I don't know how much control I have over that.

So, I'm praying and musing and working with him to get an idea, a vision for what's possible. That's where we are right now.

Autism is a world. That's what the title of the movie says, anyway. Time to open up Daniel's world a little (or a lot) more.

Tuesday, June 19, 2012

Beautiful Connections

We are back from the conference. We spent three days and nights among the disability community. It's surprising how much your focus can change in such a short span of time.

Where do I start? In hopes of not sounding too Pollyanna with my resuscitated optimism, I'll begin with the bad. It was raining when we got there. Pouring. Lightning. Melody and I are doing a version of the Atkins diet (a slightly high fasting blood sugar of mine resulted in doctors orders for a low carb summer). We'd exhausted our supply of road food and needed a meal, so we ate an overpriced Hilton restaurant salad and tried to make the best of it. Not easy. We were still hungry at meals end.

When it looked like the four of us would be trapped in the hotel room indefinitely due to storms, she complained that she wanted to go home. I kinda lost it at that point. I slammed a drawer and told everyone that I was trying my best to make sure we all had a good time, but dammit, I'm here for the conference! Maybe I should have come alone! They all got cheerier after my outburst.

We sat in the hot tub outside while the cool rain sprinkled down on us (it was really nice, refreshing, until more lightning flashed and we had to run inside). We ate the nuts I packed, and watched a movie until we fell asleep.

The rain cleared. We swam and ate less expensive food outside by the pool. We calmed down and went with the flow a little bit more. We found our groove.

Saturday afternoon while I was waiting for a session to start (something about balancing the hemispheres of the brain) a woman struck up a conversation. I thought she was a presenter because she was alone and not dressed in shorts. Turns out, she's a disability attorney, former ESE teacher, and mother of 3 kids with disabilities.

Her words, observations, suggestions and support altered my thinking in important ways. She was shocked that in Florida he's denied speech services because of his low cognitive level.

"How do they KNOW what his cognitive level is?" She was pissed. Remember, she's an attorney AND a former special ed teacher.

I told her that after listening to the last workshop on autism, I'm thinking of transferring him to a private school that will give him better communication tools. She gave me a step by step plan for keeping him in public school but in a placement that works  for him. She said it's obvious to her after a short time of being with Daniel that he's "on the spectrum."

I knew that, but I've always been hesitant to move him from a classroom where they work so hard on physical skills and into one where there are kids who have behavior issues. Daniel can't jump up and defend himself. I'm rethinking that. I don't want him to one day be able to express what he's thinking/feeling and hear that he hated school. That he felt trapped. He's thirteen, and his remaining time in school is limited.

I met a man with autism who gave a presentation that day. I'd already talked to him in the expo hall and bought one of his books. The talk was comprised of stories. He called it "Autism Across America" and he shared some of his experiences with other autistic people that he's encountered around the country.

The next day when Daniel and I were sitting by the pool in the little cabana restaurant, he sat down with us. At one point, Dan was covering his ears.

"What's wrong? Is the music bothering you?" I asked.
"It's the wind," our friend offered.
Daniel looked up, smiled and clapped as if to say, "YES! He got it! Someone who speaks my language!"

"To an autistic person the sound of eyes blinking can be painful."
I laughed.
He said, "I wasn't trying to be funny. Although, I do have several jokes I can tell."
He went on to share a few of his "adapted jokes". Some former blonde jokes with just enough details changed so that they applied to autism. Funny guy, and very smart.

When I asked him if he knew of William Stillman, a man with Aspergers who writes and lectures, he said, "There are a lot of people who do what I do. I know some of them, but I don't know all of them."
I felt stupid.

Then I said, "One of the things I learned from Stillman is to alway presume intellect."
He thought for a split second and said, "I would disagree with that. I'd have to say that I presume nothing."
Touche. Again, this man was on his intellectual toes. (Although I still maintain that presuming intellect with a non-verbal person is much better than the opposite, which we encounter all of the time).

Daniel and I weren't the only ones making friends. My sixteen year old met a teenager whose brother has Down Syndrome. We saw them in the pool together the first morning there. That afternoon, they hung out and he even convinced her to go down the slide (she's always had a fear of them). From then on, they were friends.

Saturday night we danced. Daniel wanted to sit and dance, but I was able to keep him on his feet for a few good numbers. I don't know line dances, but we swayed to Electric Slide. The other teenagers talked to him; they genuinely enjoyed having him out on the dance floor. He loved it (he might not have loved mom as dance partner, but he seemed to dig the music and other teens).

Right up until our hotel check-out there were unexpected conversations, connections and a general feeling of community. Before loading the van, I sat and talked with a woman, her disabled son and his grandmother. That brief conversation helped us both. It reminded me of how important it is to be out there making friends, finding other people who are living this life. It was good. Very good.