18 Jul 2012 5 Comments
21 Dec 2011 8 Comments
Well, here we are folks. December has been an eventful month. When Alex was diagnosed with autism several years ago, I discovered a whole new world that was bigger than the “typical” world where I had expected our family would live. A few years into “autism life,” when I would meet with moms of newly diagnosed kiddos, I often used this analogy while chatting together in my kitchen over a cup of tea:
A baby is born and there are all these expectations we have. It’s like everyone is crowded into the kitchen, oohing and ahhing over the new addition, and happily chattering about how wonderful it is to be right here in the kitchen. No one wants to step outside of the kitchen for some odd reason because they firmly believe *everyone* is living right in here.
But if you think about it, deep down everybody knows there is a whole house surrounding that kitchen. It’s just that new parents are afraid to step outside of it. No one really does it on their own, until someone else pushes them out the door into the dining room. And once that happens, once we get pushed through the door, we discover a whole house– essentially a whole new world– outside that comfortable kitchen.
And it feels better to have these other rooms to live in. It’s more comfortable than being crowded into the kitchen with everyone else. But there’s no way to explain that to someone who’s still living in the kitchen because they feel warm & comfortable & safe in there. Someday something will happen in their lives to make them leave that comfortable place and explore their own house, their particular life circumstances. And then they too will discover the whole world outside the kitchen of which they are already a part.
My new friends, and the people who looked to me for advice since I was just a bit farther along on my autism journey than they were, often told me they found that analogy comforting. Well, guess what folks? I’ve got something new to report:
Not only are most people not living in the kitchen, not only is there a whole comfortable house we families with special needs kids have to inhabit– but there are *entire villages* of people, whole communities beyond our homes and what is most familiar!
For the last few years, my family has lived essentially in crisis of one sort or another. We always managed to find the next service, the next step, the new teacher, the better intervention. But at some point, I began to feel sort of lost and my faith wavered. My son’s autism journey escalated to a crisis point where I couldn’t clearly see the next steps. And I got scared and felt alone.
On the other side of that, I recently discovered that what I really needed to do to re-frame our current family reality was simply to go back to the kitchen analogy. I had stepped outside that comfortable room years ago, but this month I walked out of the whole big house. And what I found was a village community safer, kinder and more loving than I could have imagined.
I share my experience with you here in the hopes that if you or someone you love ever needs to leave all that is familiar behind and take a similar leap of faith, you will find comfort knowing others have relocated, re-established themselves & their families, and have found hope in unexpected circumstances.
Day 1: I drive to the clinic to meet Alex’s Dad and transport Alex to his new living place. I feel tears well up as my car automatically navigates to the hospital I’ve visited nearly every day for 6 weeks. I think:
“I hope the next place is good.”
I wonder if we’ve made the right decision. Logically, I know it is the best course of action. I try to keep my emotions in check, but as I pull into the hospital parking lot, I start to sob. I park, grab my phone, and begin calling my “autism network” one by one. No one answers until I reach my sister-in-law, Adrienne.
“Am I a good mom?” I ask, my voice shaking. “I mean, I know I’m a good mother to Hannah, but I don’t know how to do this thing with Alex. I need to know– really truly– am I a good mom for Alex? Am I doing the right thing? This is so hard…”
Without hesitation, Adrienne– who is a supervisor for child protective services two states away and who has seen every family situation imaginable– replies:
“You are the best mother for Alex. You are making the ultimate sacrifice and so is he. You are giving up control to someone else so that Alex can truly get what he needs. It’s not something you want to do, it’s the hardest thing a parent can go through– to let go of your child, to let go of the dream of wanting him at home– but this is the best way to get him the things he needs that will help him. That makes you the best mother. And stronger than you know.”
I hang up the phone and take a breath. A voicemail has come in from Elsie, another mom on a similar journey:
“Alex has a higher power and this is part of his journey. You have dignity & grace to be his Mom. Think of Louise Hay’s message– she wants you to transfer love and healing to him, and that’s what you’re gonna carry: love and healing. Just pass that onto him, because that’s what he needs from his Mom right now. And you have that from the universe because whatever you put out is what you’re gonna get back. You put out the love, you’re gonna get love back. And I love you, I’m here for you. I’m sending you love, healing, warmth, serenity and peace.”
Another breath, I’m as ready as I’ll be. I meet Alex and Daddy. We drive in separate cars to the residential treatment facility. Alex rides with his Dad. Once at the facility, we’re escorted into a small conference room for the official intake. As inevitably happens, Alex wants to roam and Dad goes with him to help him explore and acclimate. I’m left alone with the very sweet social worker, nurse, and various other professionals who drop in to make introductions.
Everyone is nice, they smile and they are patient. They answer my questions. They take the piles of paperwork I’ve collected. They copy insurance cards. They ask many questions and seem pleased to get the information they need. I think:
“This is my baby! I want to tell you everything! He is my life, my heart is breaking, please, please, please hear everything!”
But I try not to talk too much and to only answer what they ask as concisely as I can. I try to trust the process, and to not cry. I fear that if all the intense emotions I’m feeling come flying out, I’ll lessen my credibility somehow and when I really need them to listen, they may not hear what’s important.
Some of the questions are hard:
“If Alex is ever in a situation where he is touched inappropriately, would he tell someone? Of course, we take every precaution to keep all of the residents safe, but this is important information for us to know in case one of the boys may unintentionally cross a boundary.”
I talk about Alex’s expressive language, what he is capable of telling us and the needs he usually does or doesn’t express. I tell the nurse Alex does not usually tell us when he is hurt or hungry, but he will answer direct questions. To the professionals I appear to be coping well. Inside my head, there is a mother on her knees crying and pleading loudly:
“Please, please, please take care of my baby!
…my baby, protect my baby boy…”
Intake finishes. We go to Alex’s new “home” and see his room. As we walk in, for the first time I meet kids exactly like him. Almost like the boys at Alex’s school, but with one difference– all of these energetic, enthusiastic guys are at the same place for essentially the same reason: They have needs that could not be met at home.
Alex’s roommate Anthony is talkative & perceptive like Alex. Another boy David melts my heart with blue eyes & a big hug. Still another, Luke, bounces by telling a staff member about his family. We play with Alex on the playground, we meet the staff members on the unit. I start to feel okay, I think maybe this situation will become okay …
Each person I meet really “gets” these kids.
Day 3: Aubrey, Hannah and I visit Alex for the first time. We hang out together in a special family visit room. Alex is his usual distracted self, I feel a little anxious. Hannah sees a small bouncy ball I included with Alex’s clothes and toys. She cries that it is hers and she wants it now! I try to be calm and understanding, but I am less than patient with her. I think to myself she has rooms full of toys, Alex is living away from home among strangers, let him have the ball for goodness sake! But I know why she protests, and how much she has given up over the years. I explain the importance of sharing some things, and then I keep quiet. Aubrey helps Hannah feel okay.
Day 5: I visit Alex on the evening of his birthday. He is wearing comfy pajamas, his favorite movie “Alvin & the Chipmunks” is playing on the TV in the common room outside his bedroom door. There is a Christmas tree with colored twinkle lights sparkling. I am amazed at how calm I feel. I tell the Treatment Manager who runs the house how reassuring this feeling is. I am grateful.
Day 8: We visit Alex at his classroom and then go with the class to the gym building for their annual Holiday Bazaar. I learn that the facility is active and involved in the community in many different ways and I realize that working together they are able to provide amazing experiences for the kids there, in ways I had never imagined. Their work not only benefits the kids, but benefits many families around them who are living in the land of the typical. My kid is part of a community that educates, empowers & makes a difference. More gratitude.
Day 9: We celebrate Alex’s 11th birthday at his new living place with Grandma and Big Pop. We decorate the play room. Alex is happy to be hosting a party for his new friends. The best part for me is being able to share pizza and cake with all of the kids and staff. I am so grateful Alex is in such a supportive environment.
Day 15: We attend the annual Holiday Show. Alex stands on stage, he participates. My eyes well up as each class sings & performs. No matter what their challenges, each individual kid’s strengths are highlighted. I sit with other mothers who share the same scars as mine, who have the same stories, who are walking just a little bit ahead on the autism journey. They say to me:
“Only two weeks? You’re doing really well!”
They offer their phone numbers, they give hugs as freely as their amazing kids whose smiles can capture hearts as easily as my Alex’s grins. I don’t even know how to tell these parents how much this connection with them means to me. But I suspect they already know. I drive home cautiously optimistic and begin to envision a new year….
… to be continued…
30 Oct 2011 27 Comments
I’m a social worker, I’m fond of talking about things no one else seems to want to talk about. Maybe that’s because I use language to process my emotions, to make sense of my world. Or maybe I’m just a glutton for emotional punishment. In any case, I’ve decided to take a leap and let you all in on what’s been going on in my autism world recently.
You’re probably thinking “Whoa, what an introduction… let me go refill my coffee cup before I dive into this…” Or perhaps you’d rather jump on over to Big Daddy Autism or Autism Army Mom for “the lighter side” of the autism life and some comic relief. Yeah, me too. I mean, seriously, I would rather be writing about funny stuff my daughter says or dancing in my living room in fancy costumes. But this is a topic that for me right now simply cannot wait. I am struggling over here. And I know other moms are too. It’s the elephant in the living room and I’m gonna talk about it:
My child got violent. Out of control, state-of-emergency violent.
Big. Bad. This-is-not-how-the-world-is-supposed-to-work, cry-out-loud-on-my-knees kinda violent. He broke a school bus window with his head. He got so destructive in his classroom, the teachers had to clear it out. Both of those incidents resulted in 911 calls. He has been hospitalized three times over the last two months. He has been picked up and carried to padded rooms in psych facilities. He has bitten, kicked, punched and spat at nurses, counselors, therapists and autism experts. His destructive behavior has broken countless things, big and small, including several hearts…
We have tried various medications but none have worked. We are now on a fourth medication (which so far seems to be helping to stabilize things– fingers crossed) but regardless of how well it works, the doctors have recommended
It took me a long time to get up the courage to face those words. I am still hopeful that residential treatment for Alex will mean a short-term stay at a residential facility, and that he will return home soon to me and his dad. I am not ready to give up that vision– in fact, I’ll tell you flat out that I believe in miracles of all sorts and that my son’s autism story does NOT end here, especially not with facility-based treatment.
So by this point I am betting you are silent. If you are a teacher or mother like me– one living in this “alternate” world of challenges– you probably feel a pang of empathy and saddness. If you are not connected to autism or my family, perhaps you are curious about this part of our journey. Or perhaps you are thinking there is someone you know who “needs to read this,” a person in a similar situation to mine.
But I am not writing to inspire anyone. I write because I need to say out loud, “My child is the biter.” I remember when Alex entered preschool and I was new to the world of stay-at-home moms. Other parents and I would convene outside the school after morning drop-off and talk about mom stuff. Mostly light funny stories, or sharing the stress of balancing family and work and life. Once in a while someone would have an anecdote about another child or parent– usually a person no one in the group knew well– and there would be whispers about a behavior, a parenting style, an interaction at school. I would walk away thinking to myself, “I’m glad my son is not the biter.”
Well guess what folks. My son *is* the biter. He is the child I am raising. And guess what else? His violence and destruction, this current struggle to remain optimistic about his future and to find my way back up after I’ve been knocked down (literally and figuratively), does not change all that I love about him or his innate potential. He is still the miracle child of my six-word memoir, the sensitive special child I will always believe in, against all odds. I give you this ramble today because I want you to know how important it is to me that the world not give up on my child– or on me. I want to talk about the elephant in the room because I understand better now what happens when a child is “the biter.”
We all need to feel some sense of control over our worlds and our futures. To think that we don’t truly know what tomorrow holds, or that the actions we take and the choices we make will not necessarily guarantee us safety and security, or protect us from what frightens us most is too much for the average psyche to handle. So we whisper about it and thank the stars for the narrow escape we just made from that particular heartache. We talk about “warrior moms” and applaud people who find the “cures” for autism, we try remedy after remedy to balance our lives so we can get through the days of this journey. But sometimes, despite all this, we find ourselves on yet again a different path. I had found hope, I had a good plan and the right helpers, and we were on track. Then the scary, violent stuff came.
Now I’m going down a new road– and no one seems to be talking about it without whispering. But I am an average mother with a son who is almost as big as I am and soon to begin puberty, a newly single parent who is also raising a typical first-grader. I know from basic statistics that I cannot possibly be the only parent in my position, given the current divorce rate and the fact that 3 out of 4 children with autism are male. And I am betting there are many other mothers in the world who are right at this moment surrounded by people and experts and “solutions,” but who are still silently screaming at the same crazy situation I am.
So there you go, I brought it up. Check out that elephant folks– it’s a big one. Powerful animal, wrinkly and gray, it could crush you if you’re not aware of where it’s standing. Oops– now it’s eating the candies out of the dish on your coffee table. Someone please step up and talk to me about it.
21 Mar 2011 20 Comments
For those of you who are wondering where I have been the last month… On March 1st, my beautiful mother Susan lost her battle with cancer. She was a pastor in the United Methodist Church & she touched many lives. I have not been able to write anything since her death except for her eulogy, which I read at her memorial service on March 5th to a church filled to capacity with clergy, family & friends. I share it with you here in the hopes that you will take away something positive from learning about my mother. And ultimately, that you will join those who knew her personally in keeping her legacy, her memory & her gifts alive & accessible for future generations. Thank you for reading.
Good morning. My name is Cathy. I am Susan’s daughter. Wow. There are a lot of people here. My mother touched a lot of lives. She was a pretty amazing woman. I’ve been told I don’t look much like my mom, but that I sound somewhat like her and I have her mannerisms. If you’ve ever had the pleasure of hearing my mother preach, then perhaps this morning you’ll hear a tiny echo of something familiar. I will try my best not to give a long sermon however—like the graces at the dinner table that just kept going on… and on… and on… right after she started seminary (as we would all sort of open one eye and look around the dinner table at each other). But the bottom line on that is: I really can’t promise anything, because as a friend recently reminded me— I am my mother’s daughter.
Which brings me to my first important point: No matter how impressed you are with this speech, I will not be preaching for any of you next Sunday!
If I cry today, please be patient with me. If I don’t cry, please be equally as accepting & understand it is not for lack of grief but is rather an answer to my fervent prayers for strength enough to make this tribute.
Let us pray: “May the words of my mouth and the meditations of our hearts be acceptable in thy sight, oh Lord my rock and my redeemer.”
As hard as I try, I am not able to make sense of cancer. I am not able to make sense of a life of hopefulness, purpose & helping others cut short at the tender age of 67. I am not able to make sense of losing my mom. But I do know that despite all this, my mother’s death does not have to be meaningless. Today we can do more than be here at this memorial service. Today we can celebrate my mother’s life, and really take to heart her contributions to the world. And we can do something much bigger than senseless cancer. Today can mean more.
At the end of my talk, I will ask you to do three very important things. We’ve handed out pencils, so please feel free to make a note or two.
So. My amazing and beautiful mother. When I was writing this, I thought a lot about what to tell you about her life. My brother and I were blessed to be loved and cherished children. We were wanted, we were respected, our parents believed in us. There is a beautiful story in the book “Radical Acceptance” by Tara Brach about a little girl about 5 years old (my Hannah’s age) who went out to dinner with her parents. The waitress came to take their order. The little girl without hesitation piped up and said “I’ll have a hot dog, French fries and a coke.” Her father said, “No, she’ll have meatloaf, mashed potatoes and green beans.” The waitress smiled, looked at the little girl and said, “So what do you want on your hot dog, honey?” When the waitress left, the girl turned to her parents with wide eyes and a big smile and said, “She thinks I’m real!”
Chris and I were always real to our mom. No matter what was happening around us or within us, our mother always believed in our potential, in our ability, and in us as our own creative entities. Not only did she “talk the talk” about respecting kids and communicating with them and listening. But she “walked the walk” as well.
One of my favorite childhood memories is what I call “the mudpie story.” I was about 3 or 4 years old and playing outside in the yard, sitting right at the end of a long hedge that went from the front door to the back porch. Of course, under that hedge was a big, awesome puddle of mud. From my vantage point, I couldn’t quite see the front door, but I could hear it open. I looked up suddenly to see my mother standing over me, looking down with no particular expression on her face. Then just as suddenly, she turned around and walked quickly back into the house. So what goes through a preschooler’s mind in that situation? Uh oh. I’m in big trouble. I know I must have been covered from head to toe in dirt and I was pretty sure her next move was to drag me off into a bath—or worse. But a few seconds later, I heard the door open again and my mother reappeared carrying pie tins, plastic spoons and plates. And she proceeded to sit down right next to me in that mud and make mudpies. (Fancy ones too, I might add—with leaves and berries and sticks for decoration—because as all of you know, my mother never did anything half-heartedly.) That was the moment I discovered my mother was cool.
So she talked about listening to kids, she advocated for kids. But she also got right down in the mud, right where we kids were, to truly listen, understand, and be there with us. Not to try to mold us to fit into an adult world, but to meet us in our kid worlds. This simple lesson became the foundation of my college & graduate school education, it became the foundation of my entire social work career working with kids and families, and indeed, it became the guiding principle I came back to time and time again when my son Alex was first diagnosed with autism. Now they call it “floor time” or other fancy names. Mom just called it “the natural thing to do” – you make mudpies.
Mom spent many years at home with me and Chris. She created a warm, loving “nest” for her family, she made our home an amazing place full of opportunities to learn (I’m thinking especially about the huge variety of pets she put up with, including a dog, several cats, fish, gerbils and my brother’s hermit crabs—ick!) Mom was a girl scout leader, an avid gardener who kept us stocked with fresh veggies, herbs & “sun tea” every summer, and a self-taught cook who graced us with meals from around the world— including Korean, Italian, French & Chinese cuisine.
She read stories out loud in the back yard, brought me tea & cookies when I did my homework, and let me stay up late listening to Beatles music with her and Dad. (Sorry Chris—I think you were still too little for those nights.) And with Mom’s superior organizational skills, she completely outfitted our green Volkswagon bus with all the trappings of a fully stocked kitchen, pantry & utility closet and every home comfort imaginable without even rearranging the seats. Now that is talent. I mean, seriously, a bomb could have wiped out the rest of our neighborhood and we could have survived in that van for six months without running out of snacks & paper towels. No lie.
So she did the stay-at-home mom thing for quite a while. And I think Chris and I would both say she aced it. It was great to grow up that way. But inside our mother, there was a persistent calling. Like a voice that steadily grew louder and louder until she could no longer just set it aside. Mom told me that when she was a small child, she had an out-of-body experience when she was really sick with a high fever. Several years later, during a youth event at her church, she felt a calling to go into the ministry. By the time Chris & I were teenagers, Mom had fully organized her life around her family, but she knew that she needed to honor the life God was guiding her toward. The year I entered college, Mom went to seminary. (And for those of you who are thinking “Aww, how sweet to be going off to school at the same time as your mom” I challenge you to have the guts to share report card time with a woman who always had a 4.0!)
I remember Mom saying to me after a couple semesters in seminary, she felt that all the things she was good at, all the stuff she knew how to do, and all her interests, finally fit together in one place. She was meant for the ministry, she was a natural born helper-leader-teacher-inspirer and she had finally found her life’s work. In truth, I don’t know much about her specific experiences in those early years, since I was away at school and busy trying to grow into my own life. But I do know that whenever we talked about her classes or her new friends or her experiences as a pastor, the common thread was always about bridging gaps. Bringing people together. Teaching according to the people’s capacity. Empowering people, creating peace out of conflict. Mom was just so darn good at unconditionally accepting people as people, and not letting differences keep her from reaching out to understand someone else. She was a scholar of systems theory, and because of her beautiful diplomacy, anywhere she went people just felt drawn to her—perhaps because they innately knew that any difference in background or philosophy between themselves and my mother would not keep them from reaching true common ground and creating win-win-win situations.
Do you all watch or listen to the TED talks? TED stands for Technology, Entertainment & Design. They’re a series of short presentations by experts across many fields & walks of life. William Ury gave a wonderful TED talk recently on the importance of the “third side” in resolving conflicts, both big and small. I highly recommend you google that one or go to www.TED.com where you can watch the 20-minute video online. Dr. Ury’s research, work and personal experiences, show that while reaching out a hand in good faith to simply introduce yourself to someone different may not seem like much, these simple things you share can indeed change the world.
In August 2009, my mother was diagnosed with peritoneal cancer. A day after her diagnosis, she must have had at least 50,000 people praying for her. Prayer requests went out in huge ripples among all the families she had touched, and my mother felt the love & prayers that came back. They sustained her through her surgery in September, and the rather long recovery which followed. In October she began intensive chemo which took the beautiful curls which framed her face, but which never took away her optimistic spirit. The chemo lasted until January, when the doctors said her cancer appeared to have been eradicated. We celebrated Mom’s renewed energy and breathed a small sigh of relief. But three and a half months later, in April 2010, the cancer came back. Mom then started a different kind of chemo to keep it at bay. On December 22nd, we discovered the cancer was now in her lungs. The next day, five days before my mother’s 67th birthday, I began writing this speech. Mom died peacefully, in her sleep, with only me and Christopher in the room. Her last words were the The Lord’s Prayer. And she waited until she knew, beyond a shadow of a doubt, that her children were ready to let her go.
Do you remember at the beginning of this talk I said I would ask you to do three things in honor of my mother? Well, grab a pencil and write this down.
First. Find a child today, any child- yours, a neighbor, a kid in church. Sit with them, be in their world for a few minutes and really listen to them. Allow them to guide you wherever the conversation may lead. Don’t just sit and watch them, really share a moment in their world. Then tell them– in whatever way feels right for you– that you believe in them, that you know they have unlimited potential to learn and that they can do good things in the world. Tell them that no matter what anyone else says they can. They can. And make sure before you go on about your day, that at least one child is absolutely sure that a grown-up knows they are real and believes in them. That was my mother’s gift to me.
Second. Find a person who is different from you. Maybe just from a different culture or background, someone who speaks another language, or maybe someone in your family who sees the world very differently. Stretch on this one, go out of your comfort zone a bit. Maybe pick the difficult person– you know the one, the one who causes you to go <sigh> and roll your eyes. Someone who is challenging or quirky or belligerent or ornery. Or perhaps someone you really don’t like very much. Reach out your hand and invite conversation. Sit with them, listen to them. Reach across that mental distance and open your mind to really hear what they say. Park your natural judgments or preconceived notions elsewhere for a moment, don’t talk back, just listen and trust that there is something important in doing this. Walk away knowing one thing about them that you didn’t know before. By doing this, you will do the most important thing a single person can do to create peace. That was my mother’s gift to the world.
Okay, so are you getting all this? Then let’s go further…
First reach out to a child. Second, reach out to someone different from you. And third—most importantly– share these ideas. Ask another person or two to try this same challenge.
I am not able to make sense of senseless cancer or to make sense of losing my mother. But I do know that today can mean more than all that. Today can mean more than simply remembering a great woman for her great work in her life here on earth. Today can be a chance to send a ripple out into the world, to shout out loud:
“Thank you God for Susan!
We remember what You called her to share with the world.
And while she is with You in heaven,
we will continue that work in honor of her.”
Let’s send a ripple out to the world that God himself can see from the clouds. Make my modest mother giggle with delight watching over us from heaven. Let’s all do that. Because she would really love it.
Thank you. God bless you. Amen.
24 Feb 2011 11 Comments
Why is it that you do not know that this monumental thing is happening even though you read my blog all the time, you ask? Because it sucks. Cancer sucks. If I were a bit more colorful with my language (as are some of the best mom bloggers I know!) I would say it f*$%ing sucks a big fat f*$%ing piece of s&!t. But of course, I’m going for a PG-rating over here.
Cancer sucks. And I have no way to explain it, to rationalize it or to somehow make sense of why my young, beautiful mother has to go through it. I have not been able to be grateful for any part of sucky cancer. I am grateful for this year and a half since her diagnosis and I am grateful for all the moments and time spent together, for the memories and …. blah blah blah. … *heavy sigh*
I’ll let you in on a little secret here:
I DON’T KNOW HOW TO DO THIS!!!
One more thing in my life that I *don’t* know how to do. People look to me for answers (“Ma’am? You do know the answers, don’t you?”) or for inspiration or for something funny. Sorry folks, I got nothing. The “A” word, the “C” word, the “D” word… apparently it is my task to gather strength from *somewhere* (looks up and around the room), to find some answer, and to do *something* with it. This time, I got nothing over here. Cancer sucks. I am angry and sad. That’s it.
There is a Buddhist meditation technique I learned in the book “Radical Acceptance” by Tara Brach. It is called “naming.” Ms. Brach writes a beautiful story about a man who was beginning to lose his memory to Alzheimer’s (another “A” word. ugh.) As the man sat down in front of a large audience to lead a meditation session, he suddenly forgot where he was and what he was supposed to be doing. So he simply bowed his head and began naming all the things he felt and that were going through his mind. When he raised his head again, the students had tears in their eyes. They told him that he had taught them more about true mindfulness than anyone else had.
floods of childhood memories one after another
wishing I could fix it
angry it is out of my control
angry at God for letting it happen
trying to find words
where there are none
stinging behind my eyes
wanting peace with this
wondering when it comes
And with that thought, Hannah walks in with a plate of gluten-free pancakes. Maybe there is no answer I will find in my writing today. But pancakes taste good anyway.
Please send prayers, energy, good thoughts to my beautiful mother. And heck, if you know other people who believe in the healing power of the universe and have access to “prayer chains” of any kind, please share this post and add her to the prayer list. Her name is Susan. Thank you.
22 Nov 2010 4 Comments
Can I tell you a secret? Those mushy Thanksgiving blogs make me feel kinda funny and lightheaded- not in a good way. On one hand, of course it’s special and beautiful to write about the crisp autumn air and the smell of apple pie and the laughter at family gatherings. Great stuff, I’m totally all for it. But to be honest, if I wrote a post like that, I think I’d feel like I was missing my own point. In fact, I might even make myself queasy. So this year, I deliberately sat down to write a list of things for which I am truly thankful, a list which includes the most important stuff without all the fluffy crap. Here it is.
I am thankful for music. All kinds of music. The songs and beats and melodies that run through my blood and make me want to take on new challenges and conquer the world.
I am thankful for expressions of joy. On my way to work this morning I saw a little girl dancing her heart out at her bus stop. Awesome, awesome! Made me want to jump up and dance with her.
I am thankful for heartache. Each time I have opened my heart to reach out to someone, to truly love with all my soul, there has been some heartache. The pain of it, while as great and terrible to my psyche as a shattering earthquake to the land, has always left me stronger, more determined, and more grateful for my ability to immerse myself in relationships and experience love. I would not be who I am were it not for heartache.
I am thankful for my memory. The memories I carry with me are a forever reminder that love continues beyond the moment and the connections I’ve made are mine to keep. What I remember of my past gives me hope for the future and all the discoveries that lie ahead.
I am thankful for my health, my breath, for the strength of my physical body, for my ability to run and dance and play. I took my body for granted for a long time. Now I realize, as I see various health problems break down the freedom or abilities of those I love, how amazingly grateful I am for my physical self. Hooray for walking up stairs, for climbing trees, for bending into yoga poses. Hooray for breathing chakras into alignment and the ability to eat well. I am thankful for all those healers who help me become more resilient and treat my body with care.
I am thankful for teachers. Those who share what they know because they are passionate and generous enable the whole world around them to be enriched. I am grateful to be surrounded by teachers of a zillion different matters and areas of expertise, big and small, in just about every field I can imagine. How blessed am I to be able to learn!
I am thankful for mentors. For those who believe in the unlimited potential of others and whose main focus is to help people to reach their goals and feel good about themselves, to uncover and bring to light the hidden talents lying just beneath the surface and to celebrate them. I am grateful for those who advocate for others and who refuse to compromise their positive view of humankind and their high expectations for the future.
I am thankful for words. I used to think my vocabulary was so limited, that I could never find the words I wanted. It wasn’t until very recently that I realized how lucky I am to be able to speak and write and think in words as well as pictures. I am grateful for communication, understanding and language. I am grateful I can tell you how I feel or what matters most to me.
I am thankful for the ability to create. Art, food, comfortable spaces, community, situations in which people can experience happy, healthy things. Creation, manifestation, achieving a goal, visualizing a dream, living life as part of the creative process, not as a means to an end.
I am thankful for you. It doesn’t matter to me what country or community or area or situation or family to whom you belong. You’re reading, so you’re listening. And the gift for me is that my words are heard and acknowledged. I am part of a community of sharing, discovering, growing people. So many of us take that for granted, but isn’t that what we all want? Recognition and the chance to know that we are heard? To feel as if we matter to someone else, that our lives matter in this place on earth? How lucky I am to have you!
Last– but most importantly– I am thankful for the two words I hear every night from Alex as he is drifting off to sleep (“Mommy cuddle”) and the kiss on my nose from Hannah Rose that wakes me up every morning. They are touchstones for my sense of belonging in this world. And I am most of all grateful to have been born of this universe and to belong here now.
26 Oct 2010 3 Comments
Seriously, who? Look at that smile…
Okay, by now if you’ve been reading regularly, you know that I’m somewhat of a sap. It’s true, I admit it, I cry at McDonald’s commercials. (And not just because the food they’re advertising is slowly killing our nation’s children… *insert loud sniffling sound here* …) Seriously, I get sentimental. I think it’s a hazard of truly knowing how to count my blessings. Each day just brings one more thing to get sappy about. Usually it’s something sweet my daughter said, or a new skill my son’s teachers discovered at school, something like that. Rarely are my sappy tears tinged with that pang of real sadness that comes with grief or loss or longing.
But this afternoon, my heart ached for my boy. For about a week now Alex has been out of sorts. Not quite himself, acting out, on the verge of a meltdown. And today he flat out punched a teacher. Of course she called me right away to tell me what had happened and we spent a good bit of time on the phone trying to sort through what might be going on inside Alex’s head. Perhaps it was hunger, after all he is growing. Maybe it’s classroom dynamics, had there been any rearranging of activities recently? The change of weather, seasonal allergies, maybe coming down with a cold? (And of course my greatest fear is ever-present in the background of these conversations. That maybe I’ll never know what’s hurting my child or what’s really going on. Maybe there is no answer, no logical conclusion. At all. Ever.)
After milling over the conversation with the teacher and all the possibilities for a couple hours this afternoon, I decided to head home from work early to spend some extra time with Alex to see if I could help him get things back on track. When I arrived, Alex and his team were just coming home with little sister Hannah from the bus stop. I could see Alex was sad, but sometimes hyper and sometimes on the verge of angry. He alternated between running to the window, looking out at the neighborhood longingly, smiling to himself; and muttering to himself in a frustrated way or looking like he was about to cry.
Yesterday afternoon at the bus stop with Alex, I noticed how particularly excited he was and how he seemed to be showing off for one of the girls who had accompanied her mother to meet her sister. He kept saying “Meet friends at the bus stop” loudly and walking over to them. The mother looked like she didn’t even know what to make of Alex, and the little girl just stood silent. I tried to encourage interaction and explained, “Alex wants to say hello and be friends, but he’s not quite sure how to do that.” She smiled politely but didn’t even attempt to say hello back. Poor Alex was doing his best to smile, make eye contact, and impress this girl with his jokes and funny plays on words. But she seemed to be having none of it. (In her defense, maybe she was home sick from school or there was something else preventing her from coming forward to join the conversation. Still it was heartbreaking to watch.) So apparently today Alex had thrown a fit at the bus stop when he tried to get on the bus to talk to the same girl and was told by the bus driver that wasn’t allowed.
Take a sensitive ten year old boy whose receptive language and comprehension are perfect, put him in a body who’s expressive language is impaired and whose social barometers are skewed. Then amp up all the typical desires, challenges and emotions that go along with being a ten year old guy. Throw the whole thing into the world of elementary school “bus stop politics,” add a parent or two who are essentially clueless about kids who are different from their own, and mix in the absolute embarrassment of a public meltdown. What do you get?
For me, I got a pang of sadness. I ached for Alex and wished so much that the object of his affection could see how hard he was trying and would feel compassion and interact with him. I wanted the other moms and dads and kids to see what I see in my son. I wanted them to know how much it took for him to be socializing the way he was. And goshdarnit! I wanted them to recognize how special that whole situation was and how lucky they were to be part of it.
But my blessings are not their blessings. And honestly, I don’t know if any of the other players in this scenario know how to count them or not. When I was a kid, I was like that little girl. I wish now that someone had shown me how to reach out and take a chance on something or someone new. I see the amazing ways my life has been enriched by the extra special folks I’ve come to know in the last seven years. That is my blessing and I am lucky to recognize it.
In the early years of Alex’s autism, my friend Susan recounted a story about seeing a mother in Bloomingdales department store yelling at her little girl because she spilled ice cream on her dress. Susan said if it weren’t for her oldest daughter with ASD, “I coulda been that mom. Now I know the dress will wash, the spill doesn’t matter. But I so easily coulda been that mom yelling at her kid. I am grateful for my daughter because she changed me.”
Alex, sweetheart, girls are silly. Sometimes they act strange and it’s okay if you don’t understand them. I think nobody really does. Remember that you are smart and funny and handsome, even if that silly girl didn’t pay any attention. You have many gifts to be appreciated. It’s your challenge to communicate out there in the world, but you keep trying because you’re doing great. And at least one girl- your mom- is grateful to know the wonderful person you really are. Thanks for changing me.