You can't know what you know before you know it.
No one is harder on me than me.
Agonal Gasps are not regular breathing. The victim should be treated as not-breathing.
You were turning blue. My mom said, "I think you need to get him out of that car seat!"
"I think you're right..."
But you were still "breathing", kinda. I got you out of the car seat and held you more upright.
Then your eyes rolled up in your head and you turned off.
You can't know something before you know it.
The rescue breaths did not go it. The airway was blocked. I used the bulb syringe to clear your throat.
The breaths went in. Your eyes opened. We went to the hospital.
"I just resuscitated my infant." The nurse took you from my hands. For 4 days we stayed. You were on oxygen.
Agonal Gasps are not regular breathing.
...
I was tired. I wanted to tell the nurse that I wanted to nurse you right away, but they left and took you over to a table. Your dad had followed them.
"Put the baby to breast. Maybe that will clear the airway."
?! I want to nurse the baby right now anyway.
They took you to NICU. I managed to walk myself down there.
"It's just a precaution"
You looked bigger and healthier than the other babies in there...
I could not walk back to my room.
"We will bring him to you soon. You need to rest."
You can't know something before you know it.
I had read as many books as I could. The hard part was getting the shoulders through the birth canal.
They call it "labor" for a reason. The work isn't over.
13 hours of labor with the water broken, the epidural unplugged without anyone noticing, so they thought I was feeling more pain because it was intensifying - time to push.
"Torso stuck in the vaginal canal. APGAR score low."
....
"Two incidents of oxygen deprivation so close? Clearly, that has caused what you are seeing", says the neurologist.
"Developmental Delay"
"You want to intervene early - the brain is still elastic."
PT, OT, OCD meds?!
You can't know something before you know it.
It turned into PDD-NOS - Pervasive Developmental Delay - Not Otherwise Specified
more doctor visits, more reading...
It turned into Asperger's, with SPD and OCD, and ADHD tendecies.
They changed "The Manual" - It turned into Autism Spectrum Disorder.
...
"He is so bright!"
"He is such a good hugger!"
"He is a loving child."
"He really has a parenting problem, not a medical problem..."
You can't know something before you know it.
....
I tell you every week, sometimes everyday, "What conquers fear? KNOWLEDGE."
I read, I follow blogs, I join groups, I talk to doctors and therapists and other parents...
....
No one is harder on me than me. What could I have done differently?
Could I have labored harder?
Should I have known they were agonal gasps?
I watch very carefully. I keep trying to measure in what capacity I can serve you better. How do I best equip you for life?
How can I give you more?
....
My God, what did I take from you!?
I tell doctors and other parents all the time that you have always been... you - that we have always seen all these behaviors. That you do what other members of your family have done before you...
Fear I can face with Courage, how do I face Guilt?
....
What if I didn't "take something from you", but instead I "opened a door for you" - somehow gave you a "gift"?
It all went down too perfectly. I didn't know what I didn't know. I didn't know about labor. I didn't know about agonal gasps. You were in a seat where we could see you struggle. I had reviewed infant CPR just weeks before. We were less than 5 miles from the hospital.
We all love you so very much. More than anything, we want you to know that you never ever need to be alone.
....
Gifted? yeah, I know that term... I received it when I was 8.
It's a powerful thing to tell an 8 year old that you are smarter than most people... but you have to find some complement for that student who is too uncoordinated to play at recess, who is rigid and difficult to work with.
But gifts must be tempered with humility. When you can see what others can't you have a responsibility to make things better.
"You are Gifted. It is your job to take us all forward with you. You are the next doctors who will find new cures. You are the next politicians who will make and keep peace. You are the next leaders."
"Your gifts aren't for you. They are for Humanity."
There is a growing group of Autism Parents and Autistic Adults who believe that autistic people are the next evolution of humanity, divinely destined to help usher humanity into its next Age.
....
I do not ever want you to be saddled with "Gifted".
I do not ever want you to be saddled with "Disabled".
You are not going to ever be considered "Normal" either...
....
Every minute, every component of my life is arranged to help build your success. I attempted to educate the schools, to help them equip themselves with the tools that would help you and them. I used every ounce of experience and knowledge I had gained as a teacher and a parent...
I changed jobs so that you could stay home and be safe. I worked hard to forge a community of friends and family that will bend to you without giving in to you. I asked for help. I begged for help.
I refuse to buy into the mentality of "lack". I work hard to share a place with you of celebration, to presume competence.
I work to spread knowledge about how the whole world could teach and learn in better ways, more inclusive ways. I present at conferences. I talk to parents at the park. I write my own blog.
I became a CPR instructor so other parents can be armed with information when nightmares come true.
I pray.
I cry.
I hope.
I tell myself that by working to make the world better for all learners I am serving your interests as well as meeting my responsibilities to Humanity.
But I don't know what I don't know.
No one is harder on me than me.
I keep trying to build knowledge.
Fear is faced with Courage.
What faces Guilt?
....
I know with out any doubt that you were sent back for a reason. I can only pray that I am the parent you need; that I can figure out how to help you meet that reason - without passing on my own weights.
Your life needs to belong to YOU.
dragon pups
Showing posts with label differences. Show all posts
Showing posts with label differences. Show all posts
Saturday, April 11, 2015
Wednesday, February 18, 2015
Narrative Therapy, Echolalia
I found my time at the ACCT conference exciting and informative. The classes I took affirmed for me that I am in the right industry.
At my last workshop, I ran into an idea that has me still reeling to connect all the dots.
The workshop was based in the Therapeutic Psychology of Carl Jung. The therapeutic model of looking at the world first and foremost believes that the everything a person does happens for a reason - "Behavior IS Communication". Jungian psychology specifically looks at ways in which we express our subconscious, like in art and dreams. The point of the workshop for challenge course facilitators is that the very act of creating art, especially when we ask people to do it as a group, creates a conversation opener, a tangible expression of what we might have difficulty labeling with words.
Here's what I heard:
One aspect of Jungian Psychology is Narrative Therapy. It is a practice by which a therapist may ask someone to just tell a story. The therapist may then retell the story with some slight changes to suggest another resolution of the conflict or ask questions that help to identify an underlying theme.
Here's what my head said:
Seriously?! As if I have not been doing that every day for the past 10 years deciphering my son's constant external internal dialogue? I can't even begin to count the hours spent trying to figure out how a specific episode of Dora or Diego recited verbatim related to whatever activity we may have been doing or a place we might have been , or something we drove by, or something he might have overheard... only to finally figure out that he was talking about food episodes because he was hungry.
[As a matter of fact, when I retold the definition/ explanation above to my husband, he actually started laughing and said, "there's a whole theory about that?"]
Then I tried to refocus on the content of the workshop. I worked with some new friends to create a sculpture of "7th grade" out of a bag of toys. We ended up setting up "boy" toys vs "girl" toys in our remembered gender segregation. It got really interesting when we looked at the other group (who got to represent themselves), and I noted how the shape they created represented both a tree and a brain (key components of challenge course work). The presenter even asked me if I was trained in psychology. (It took a great deal of effort not to have a smarta$$ answer about how the years living with the detective work of echolalia certainly should count as "training").
I can totally understand how this tool, building "sculptures" out of an odd collection of old toys and things by an entire group, can be a great catalyst for conversation about how they perceive their dynamic. I can understand how a facilitator doesn't need to be a psychologist to ask meaningful questions about how the group decided to use or arrange particular elements in their "diagram".
But what I left with was this reeling feeling that I had been had. I was disappointed. I was shaken. How many articles have I read, forwarded, shared about echolalia, about the debate of harnessing vs redirecting? How much time and money has been poured into speech therapy to "fix" this? (By the school system, even if not by me). Parents have been trying to assert (for at least the 10 years we've been at this) that echolalia is a legitimate form of communication, that while it requires lots of creativity and persistence, it can be effective.
And I am angry.
If this is pretty common medical knowledge (Jung studied with Freud, so these theories are not new), and rather regular therapeutic practice (not just theory), then why are parents of autistic child not armed with such knowledge actively? Why can't the "medical model" of autism encourage us to look into, harness even, alternative forms of communication, instead of assigning us to the incurable disaster of isolation (for our loved one, for our family)?
Indeed I am so angry, that as I proof this, I am not even sure that I can coherently express myself.
The "World" must STOP telling parents that they do not "get" their kid. The "World" must STOP perpetuating the message that experts who do not live with a person somehow know more than the family that shares rhythms, experiences, history with that person.
It comes back to that idea that we, all of us, need to start looking at the "can do"s instead of the "can't do"s. Let's start acknowledging that we are all inherently driven to communicate, but it takes creativity to "hear" sometimes.
At my last workshop, I ran into an idea that has me still reeling to connect all the dots.
The workshop was based in the Therapeutic Psychology of Carl Jung. The therapeutic model of looking at the world first and foremost believes that the everything a person does happens for a reason - "Behavior IS Communication". Jungian psychology specifically looks at ways in which we express our subconscious, like in art and dreams. The point of the workshop for challenge course facilitators is that the very act of creating art, especially when we ask people to do it as a group, creates a conversation opener, a tangible expression of what we might have difficulty labeling with words.
Here's what I heard:
One aspect of Jungian Psychology is Narrative Therapy. It is a practice by which a therapist may ask someone to just tell a story. The therapist may then retell the story with some slight changes to suggest another resolution of the conflict or ask questions that help to identify an underlying theme.
Here's what my head said:
Seriously?! As if I have not been doing that every day for the past 10 years deciphering my son's constant external internal dialogue? I can't even begin to count the hours spent trying to figure out how a specific episode of Dora or Diego recited verbatim related to whatever activity we may have been doing or a place we might have been , or something we drove by, or something he might have overheard... only to finally figure out that he was talking about food episodes because he was hungry.
[As a matter of fact, when I retold the definition/ explanation above to my husband, he actually started laughing and said, "there's a whole theory about that?"]
Then I tried to refocus on the content of the workshop. I worked with some new friends to create a sculpture of "7th grade" out of a bag of toys. We ended up setting up "boy" toys vs "girl" toys in our remembered gender segregation. It got really interesting when we looked at the other group (who got to represent themselves), and I noted how the shape they created represented both a tree and a brain (key components of challenge course work). The presenter even asked me if I was trained in psychology. (It took a great deal of effort not to have a smarta$$ answer about how the years living with the detective work of echolalia certainly should count as "training").
I can totally understand how this tool, building "sculptures" out of an odd collection of old toys and things by an entire group, can be a great catalyst for conversation about how they perceive their dynamic. I can understand how a facilitator doesn't need to be a psychologist to ask meaningful questions about how the group decided to use or arrange particular elements in their "diagram".
But what I left with was this reeling feeling that I had been had. I was disappointed. I was shaken. How many articles have I read, forwarded, shared about echolalia, about the debate of harnessing vs redirecting? How much time and money has been poured into speech therapy to "fix" this? (By the school system, even if not by me). Parents have been trying to assert (for at least the 10 years we've been at this) that echolalia is a legitimate form of communication, that while it requires lots of creativity and persistence, it can be effective.
And I am angry.
If this is pretty common medical knowledge (Jung studied with Freud, so these theories are not new), and rather regular therapeutic practice (not just theory), then why are parents of autistic child not armed with such knowledge actively? Why can't the "medical model" of autism encourage us to look into, harness even, alternative forms of communication, instead of assigning us to the incurable disaster of isolation (for our loved one, for our family)?
Indeed I am so angry, that as I proof this, I am not even sure that I can coherently express myself.
The "World" must STOP telling parents that they do not "get" their kid. The "World" must STOP perpetuating the message that experts who do not live with a person somehow know more than the family that shares rhythms, experiences, history with that person.
It comes back to that idea that we, all of us, need to start looking at the "can do"s instead of the "can't do"s. Let's start acknowledging that we are all inherently driven to communicate, but it takes creativity to "hear" sometimes.
Wednesday, December 17, 2014
Letter to My Son...
Son, we've been arguing a lot lately. I know you are growing into a young man, that you are learning about how your body and mind is changing *as* you change. And change is hard.
I understand deeply that it is just as hard to find out who you are as it is for the world around you to let you find out who you are. There are lots of people here to help you, to show you a version of "adult", so that you can compare notes and see what fits with your personality, your skills, your being. We, the adults who love you, will ask things of you, even demand things of you, that we have learned to be Essential to Adulthood. We are doing our best to equip you with the tools to help you be who you are meant to be.
And you are not any of us, you are YOU. The only you that is just like you. You have been created singularly to do some awesome thing that God has created you to do. You probably have not done that Awesome Thing yet, even though you've done some awesome things. You will probably be in an information collecting phase for a long time yet. That may sound daunting, but know that every step, every.single.one., leads you to a skill, an experience, a person who is supposed to be part of your road, a building stone for your Awesome Thing.
I know that change is hard. Growth usually comes with struggle, even for plants and rocks. There are times when you will feel like you NEED to hold on, to keep what you had. I feel that way too - that's why I look for the little boy in the man you are becoming. But when we refuse to let go, we put up road blocks on our way to our Awesome Thing.
I want to walk your road with you as long as you'd like me to. Some parts I won't be able to go on, and some times I have to walk toward my own Awesome Thing, a road you won't be able to go on. I'll hold you hand, or I'll hear you out, or I'll give advise, or I'll out right shove you. Some roads I will block you from out of my own fears.
I know beyond doubting that God created you just the way you are for a Divine Purpose, for an Awesome Thing. I also know that God planted you conspicuously in my path, so you must need some of my wisdom.
I am asking, requesting, that you please see me as a Gift to you just as I see you as a Gift to me. I am reminding you that all the people around you are here to be your arrows, your pathway lights. And I am knowing that the Incredible You that you are will follow Your Road to your Awesome Thing. I am respecting that your life is your own, even if we have to share space and the consequences of your decisions.
There is nothing you will ever do that will make me stop loving you, even as we both struggle with change.
And that is all true whether you have autism, or not.
I understand deeply that it is just as hard to find out who you are as it is for the world around you to let you find out who you are. There are lots of people here to help you, to show you a version of "adult", so that you can compare notes and see what fits with your personality, your skills, your being. We, the adults who love you, will ask things of you, even demand things of you, that we have learned to be Essential to Adulthood. We are doing our best to equip you with the tools to help you be who you are meant to be.
And you are not any of us, you are YOU. The only you that is just like you. You have been created singularly to do some awesome thing that God has created you to do. You probably have not done that Awesome Thing yet, even though you've done some awesome things. You will probably be in an information collecting phase for a long time yet. That may sound daunting, but know that every step, every.single.one., leads you to a skill, an experience, a person who is supposed to be part of your road, a building stone for your Awesome Thing.
I know that change is hard. Growth usually comes with struggle, even for plants and rocks. There are times when you will feel like you NEED to hold on, to keep what you had. I feel that way too - that's why I look for the little boy in the man you are becoming. But when we refuse to let go, we put up road blocks on our way to our Awesome Thing.
I want to walk your road with you as long as you'd like me to. Some parts I won't be able to go on, and some times I have to walk toward my own Awesome Thing, a road you won't be able to go on. I'll hold you hand, or I'll hear you out, or I'll give advise, or I'll out right shove you. Some roads I will block you from out of my own fears.
I know beyond doubting that God created you just the way you are for a Divine Purpose, for an Awesome Thing. I also know that God planted you conspicuously in my path, so you must need some of my wisdom.
I am asking, requesting, that you please see me as a Gift to you just as I see you as a Gift to me. I am reminding you that all the people around you are here to be your arrows, your pathway lights. And I am knowing that the Incredible You that you are will follow Your Road to your Awesome Thing. I am respecting that your life is your own, even if we have to share space and the consequences of your decisions.
There is nothing you will ever do that will make me stop loving you, even as we both struggle with change.
And that is all true whether you have autism, or not.
- inspired from a post by Diary of a Mom.
Monday, December 15, 2014
More on this Parenting Guilt Thing...
I know I have belabored this point...
I have over thunk it, torn it apart, put it back together, and tried to refocus around it or through it, or something..
It may not show up in this forum that way, but all my friends have heard it, and my head has heard it too much..
Sometimes I am appalled at how much our parenting is compelled by fear... by guilt...
I was able to see my Mom's guilt, and determined to not pass it on to my kids, though I do not think I succeeded...
I was able to see how my father's fear defined our lives, and determined not to pass that on to my kids, but I didn't really succeed at that either...
The Autism is a driving Fear Factor in our household. We have inadvertently used it to try to motivate our son into meeting the new responsibilities and challenges he faces as he grows up. We are afraid. Afraid he will not be able to use a pubic bathroom independently (still.. at age 10). Afraid he will not put enough effort into studies to use his intellectual potential. Afraid he will not be able to eat at a table of people without disgusting them. Afraid he will make someone angry enough to hit back, verbally or physically. Afraid he will lock himself up emotionally with fear and not let us love him and help him. Afraid that he hates himself. Afraid he will hurt himself. Afraid he will hurt others.
Desperately, unspeakably afraid that someone will take him away from us, that someone will decide we just don't love him enough...
There is just so much fear.
We know he is a caring person. He keeps the secret of the Tooth Fairy and Santa for his younger sister and children everywhere (even though he argues with her that fairies are not real). He includes us in his daily story-telling as characters and in tat dialogue tells us that he loves us and understands our perspectives. As always, he tries very hard to engage us in play.
While Autism looms largest, it is not the only fear. Dyslexia is looming pretty large in our horizon.
We have allowed our fear that she will be taken advantage of to let us fall into that trap of saying the non-reader is lazy. Our daughter is a loving person, aware of people's feelings, trying to figure out the universe in this skewed version she's landed in. She loves movement, and struggles to hear and see like the rest of us. She is teaching her brother invaluable lessons in bending to others, sharing space and time, and being family. But we have hit a place where she is afraid she doesn't have what it takes, where she fear of the comparison that finds her lacking stifles her effort. She copes with her people skills - she asks for help. She acts helpless so that others will help her.
I am so very very tired of the fear. My heart is starting to tell me that we have NOTHING FEAR EXCEPT FEAR ITSELF. If we just play, if we just love them, won;t they know how fabulous they are? Won't they grow into the beauty we expect of them? Won't that really be all they really need?
It is easier for me on sunny days, but I am going to try REALLY, REALLY hard to just love them! to just PLAY with them! to just ENJOY MY CHILDREN.
I am going to set aside the workbooks and pressure. I am going to LOVE them!
And I need your help reminding me of all this as we move forward. I need you to remind me that loving people is more important than testing them, or molding them, or even teaching them.
And kudos to my parenting partner, to my husband, to their father, for helping me to rediscover the love in this journey on a constant basis.
I have over thunk it, torn it apart, put it back together, and tried to refocus around it or through it, or something..
It may not show up in this forum that way, but all my friends have heard it, and my head has heard it too much..
Sometimes I am appalled at how much our parenting is compelled by fear... by guilt...
I was able to see my Mom's guilt, and determined to not pass it on to my kids, though I do not think I succeeded...
I was able to see how my father's fear defined our lives, and determined not to pass that on to my kids, but I didn't really succeed at that either...
The Autism is a driving Fear Factor in our household. We have inadvertently used it to try to motivate our son into meeting the new responsibilities and challenges he faces as he grows up. We are afraid. Afraid he will not be able to use a pubic bathroom independently (still.. at age 10). Afraid he will not put enough effort into studies to use his intellectual potential. Afraid he will not be able to eat at a table of people without disgusting them. Afraid he will make someone angry enough to hit back, verbally or physically. Afraid he will lock himself up emotionally with fear and not let us love him and help him. Afraid that he hates himself. Afraid he will hurt himself. Afraid he will hurt others.
Desperately, unspeakably afraid that someone will take him away from us, that someone will decide we just don't love him enough...
There is just so much fear.
We know he is a caring person. He keeps the secret of the Tooth Fairy and Santa for his younger sister and children everywhere (even though he argues with her that fairies are not real). He includes us in his daily story-telling as characters and in tat dialogue tells us that he loves us and understands our perspectives. As always, he tries very hard to engage us in play.
While Autism looms largest, it is not the only fear. Dyslexia is looming pretty large in our horizon.
We have allowed our fear that she will be taken advantage of to let us fall into that trap of saying the non-reader is lazy. Our daughter is a loving person, aware of people's feelings, trying to figure out the universe in this skewed version she's landed in. She loves movement, and struggles to hear and see like the rest of us. She is teaching her brother invaluable lessons in bending to others, sharing space and time, and being family. But we have hit a place where she is afraid she doesn't have what it takes, where she fear of the comparison that finds her lacking stifles her effort. She copes with her people skills - she asks for help. She acts helpless so that others will help her.
I am so very very tired of the fear. My heart is starting to tell me that we have NOTHING FEAR EXCEPT FEAR ITSELF. If we just play, if we just love them, won;t they know how fabulous they are? Won't they grow into the beauty we expect of them? Won't that really be all they really need?
It is easier for me on sunny days, but I am going to try REALLY, REALLY hard to just love them! to just PLAY with them! to just ENJOY MY CHILDREN.
I am going to set aside the workbooks and pressure. I am going to LOVE them!
And I need your help reminding me of all this as we move forward. I need you to remind me that loving people is more important than testing them, or molding them, or even teaching them.
And kudos to my parenting partner, to my husband, to their father, for helping me to rediscover the love in this journey on a constant basis.
Sunday, October 26, 2014
AEE conference- Professional Development
About a month ago I ran across a reference to the Association for Experiential Education. I had heard of it before, but this time was "closer to home". The international conference was to be held near my parents' home, on a weekend that I was already free from parenting responsibilities. It just felt like an opportunity that could not be missed.
So, I didn't miss it. I was able to go for only one day, not the whole conference, but that's still something. So, I had new business cards made, cleared the calendar days, changed the oil in my car, and drove down.
Funny thing about professional development - it's more than just professional. Maybe it has to do with my own sense of connectedness and synchronicity, or maybe it has to do with this "experiential education" industry, or maybe it's that your "professional" self is just an expression of your divinely designated responsibilities to humanity... but I certainly had personal development as well as learning a whole lot about this profession.
So I am going recall, to reflect, to try to process...
The closing event was an award to the "facilitator of the year" - who (naturally) turned out to be an interesting character. What struck me is how he described that he "trusted the process" of experience, of letting time and experience work together to teach, to let the learning happen. He told some stories to sum up his experience, and said that while he hadn't figured out why these stories were important yet, he knew that time would show him why...
I trust...
Experience IS the best teacher...
The night before the event, I had an odd dream, about changing jobs, about working in a prison undercover (I had watched Magnum P.I.), and just before I woke, as my body struggled to pull my mind out of that reality into the stretching and bodily awareness of my bed, I literally ran back into the "room" I had been in and yelled, "I have an idea! We need to establish a Family Adventure Therapy Program!" My head visualized it as some Big Key, Primary Component. I woke incredulous. I am not a therapist. I am a teacher. I have no experience, background, or reference for that idea.
I had scoured the website, seeking this details that would allow me to negotiate the space of the event successfully - maps of classroom/ meeting rooms, mention of registration hours, where to park... didn't find it. So I went over an hour early. Turns out it was a straight shot, easy to find, clearly marked, and Starbucks was open.
I perused the workshop listings. I had made the final emotional commitment to coming because one workshop was specifically about working with Autism. There were 2 other time slots to fill. I found one about assessment. I feel like assessment is the key "sticking point" that makes schooling ineffective. I also feel like we need better vocabulary to describe what we see when we assess. At the very end of the listing a workshop was listed: "Family Enrichment Adventure Therapy: FEAT". Was that really relevant to me?
Assessment workshop: VERY useful, very insightful. Made an immediate link with Sensory Processing language, found a new resource. Also gained insight into how those decisions to "read" a group and choose a good catalyst for change (the next challenge activity) were made. The assessment had to do with the facilitator goals (the end objective), but it also was about what classroom teachers call "ongoing assessment" - figuring out where a student is "at". It also was clear that the language they used to assess is similar to what I do with sensory awareness with swim students. I speak to my observation/ feeling, suggesting a vocabulary for the learner, and then invite them to share their differences in perception (allow myself to be wrong)... letting the learner own their learned experience. The instructor was specific about not using the word "why", but instead "how would you describe" or "what do you think happened". He felt "why" was too big, too open-ended... I have always felt like "why" is the elephant in the room - the one thing people won't ask. I also learned 2 new activities. I also was called out on being an "autism mom" and trying to facilitate surprise and re-label risk.
ActivatEE session: it was unclear what that would be, but everyone was invited. It turned out to be EPIC. 5 general members were invited to have their 5 minutes of platform, their 5 minutes to inspire, their 5 minutes to be heard. It was moving. Gender equality, authenticity to self, authentic assessment, finding motivation in disaster, inspired insightfulness... great storytelling, great stories. It makes me want to be heard too! I know what I have to say is important, even if I am not sure what needs to be said yet. I even ran into (by chance?) the organization's CEO while getting directions to lunch, who agreed that my passion for learning outside the classroom would be well met in the ActivatEE format.
Lunch: found a pub in town, got to see a community taking care of itself - playing old country music for a regular customer, watching the dynamic of people caring for people... and good fried pickles.
Autism workshop: one of the presenters was one of the pediatricians who helped to rewrite the DSM and define what autism is. He spoke of the spectrum, of outliers, and providing adequate supports without functionality labels. He has been running a camp for autistic people for 10+ years, and kept his organization at a state level out of the political debates that rage in the Autism Community. He just helps people. The co-presenter demonstrated exactly how common challenge activities can be used to facilitate exactly skills and norms that we (neurotypical people) value in behavior (commonly called Social Skills). I feel so strongly that I want to be a PART of THAT!! I do not understand how, but again, my passion for stopping the pounding of square pegs into round holes, for embracing the infinite diversity of humanity, for inclusion and understanding is loud enough to be recognized, visible to others. I did feel like the conversation about sensory processing can be approached from different angles that generate more of a sense of identification, of shared experience. I also think that we are still down-playing the actuality of the "6th sense"/ psychic intuitiveness that people with autism experience. I can also see that I am not researching or discovering "new" ideas, but I am putting them together is new ways, seeing pictures others don't, and those insights are helpful to others. After the session I spoke to a participant about "islands of information" and redirecting obsessive concerns to constructive ends. I am not even sure what I told her, but it resonated with her about a challenge she was facing.
3rd workshop: I had talked myself out of going to the FEAT workshop, but in the Autism workshop I heard someone talking about how great the presenters were. I followed my intuition. Valuable lessons. For whatever reason, I was very insecure in this workshop. I guess I felt very out of my element. I was called on mothering and teaching behaviors that I reverted to instinctively and unconsciously. I felt ashamed, but grateful to be taught. I was reminded to let other people keep their struggles. I was reminded that I can lead a horse to water, but I can't make him drink... and that a good facilitator creates thirst. I learned some new activities with new tools, and was reminded of my own abilities and skills with ropes. Somehow the presenter recognized that I was drawn there by intuition, and he made a point of connecting with me personally at the end of the session. I do not know yet why this is important, but I know I was overwhelmed to the point of tears when he spoke with me. He reminded me that he is not a "therapist". There is something I still need to "find".
I am still confident that I needed to BE at that conference. I know that I was rattled by the observations about my parenting and teaching. I know that I was overcome with passion to make the world a better place. I know I met people that will prove to be important connections. I know that for me, like many there, the organization will be an emotional "home".
I do not understand yet how. There are more pieces that need to settle in...
but I TRUST THIS PROCESS...
Tuesday, September 23, 2014
Not Speaking...
So I had a little epiphany moment today...
What if God creates non-verbal children because he is forcing us to communicate in a different fashion?
As a challenge course facilitator I do that all the time.
A member of the group knows too much? They have to play silently so the rest of the team has a chance to figure it out for themselves...
One voice drowns out the others? Challenge that member to play silently so that new voices are heard...
Some groups don't find success at all until we tell them they all have to be silent - and then the arguing stops and they actually start completing the task...
I start most groups with a partnered hike in which one member is mute and the other blind, so that they are forced to think of novel ways to communicate. They are ALWAYS successful, even in navigating long stairwells...
So maybe that non-verbal child is there to help FORCE us to communicate in new, novel ways that are designed to help us figure it out for ourselves...
I also had another epiphany moment today.
I was thinking about how I look at things that happen around me, and about how I relate to them, give them significance, by finding connections to the stories of my own life. I was thinking that while it helps me to feel things as real, it also limits me to stories about myself. I actually was thinking how frustrating it is that I only get this one life, this one way in which to relate to things! I was thinking that I would love to know even more by being able to see and feel from another person too... I was both glad to have a life that relates (connects) to things, and frustrated to be limited to just this one.
just thinking...
What if God creates non-verbal children because he is forcing us to communicate in a different fashion?
As a challenge course facilitator I do that all the time.
A member of the group knows too much? They have to play silently so the rest of the team has a chance to figure it out for themselves...
One voice drowns out the others? Challenge that member to play silently so that new voices are heard...
Some groups don't find success at all until we tell them they all have to be silent - and then the arguing stops and they actually start completing the task...
I start most groups with a partnered hike in which one member is mute and the other blind, so that they are forced to think of novel ways to communicate. They are ALWAYS successful, even in navigating long stairwells...
So maybe that non-verbal child is there to help FORCE us to communicate in new, novel ways that are designed to help us figure it out for ourselves...
I also had another epiphany moment today.
I was thinking about how I look at things that happen around me, and about how I relate to them, give them significance, by finding connections to the stories of my own life. I was thinking that while it helps me to feel things as real, it also limits me to stories about myself. I actually was thinking how frustrating it is that I only get this one life, this one way in which to relate to things! I was thinking that I would love to know even more by being able to see and feel from another person too... I was both glad to have a life that relates (connects) to things, and frustrated to be limited to just this one.
just thinking...
Monday, February 3, 2014
On rebooting...
"This day I will dry my wings in the sun like the cormorant, and leave footprints in the sand like the piper, before I too dive back in to the work of living..."
- Facebook post 2/3/2012
And so I began my day. At 7:45 am I went to the beach and watched world wake up.
I am VERY lucky. My husband and my mother have both given me emotional permission to take 1 whole day to just be at the beach in Florida after the ACCT conference. I love people, and I love learning, but I also need to have time to process & reflect. Don't get me wrong. I have checked facebook all day, even responded to some emails, spoke warmly with the hotel clerk, talked to many artisans along the pier, and had a conversation about the weather and dogs with a lady from Maryland resting on a bench. I will never be a social recluse...
But I also just sat and watched and rested. I saw the cormorants posed along the tops of poles and rocks, drying their wings in the rising sun. I watched the gulls frantically gather when they thought someone had a tasty morsel, and then nap on one leg until beach goers unconsciously walked over them to set up chairs. I watched pelicans use their size to bully gulls off the poles, and then sweep their great wings open as they dropped off the pole to the water in search of breakfast. I watched the sandpipers scurry and search through the crashing surf for tasty yummies, fabulously intent, yet multi-tasking; it was as if I could here their minds running at ADHD speeds as they tried to be negotiate the delicate task of finding the critters rolled up by the tide but not let the water catch them. I watched the locals, mostly elderly, take their morning constitutional, occasionally passed by joggers, along the water's edge where the sand is firmer. I watched several older gentlemen deeply involved in treasure hunting with their metal detectors and sand-sifting baskets. I watched as all those people along the beach stopped and directed their attention to the water, and followed their gaze to the pod of dolphins galavanting in the surf between the beach and the poles. I watched the lifeguard come on duty, and set up all his equipment and tidy up the stand area. I watched a large fish (maybe 6-7 inches) with big sweeping wings come very close to my feet, and then realized he was stalking a much smaller fish who was hiding in my shadow. I have never in my whole life seen live fish within arms distance in the water of a beach. I relished the heat of the sun on my skin, the cold the water in my legs, the grit and cool heaviness of the sand on my feet.
And I collected shells. I did so because as I watched all these people on the beach, they were all collecting shells. Even those who were clearly locals or were intent on exercising would stop occasionally and collect shells. The only people I did not see pick up shells were the lifeguard and the metal detector guys. It occurred to me that it might be a good way for me to find something to take home to my children. The thought of my children, of course, made me think about what I could teach from a shell collection, so I wandered around for a while trying to find shells that inspired a teachable moment.
I found many with different vibrant colors and shapes (diversity), and others beached white (solar power discussion). I found some with a pearly sheen and others more like procelian (chemical composition). I found a chunk with barnacles on it, and one large one that had circles where the barnacles used to be (ecosystems & erosion). I found some that had holes or grooves where rolling through the surf had started turning them into sand, and others broken into pieces (erosion).
And then I reached a point where I realized that every single shell had a teachable moment in it. Each one of those shells and shell fragments housed an animal, told the story of a life.
And there were SO MANY of them! So many that even though every body was taking them, the beach was not diminished...
I had a little epiphany... As I looked and looked, and was overwhelmed with the breadth of options that laid on the ground before me, I suddenly realized I couldn't see it anymore. I realized I could not complete my task (finding shells), because I did not know what to look for.
You have to know what you are looking for in order to find it. Without knowing what you are looking for, you will not find it, even if it is in your hands, because you will not have a name for it.
In teaching we call this "setting the objective". That is why the classroom teacher is required to write the objectives on the board each day, and that is why you can't write the lesson until you know what outcome you expect, and that is why you can only assess after you've determined what you have taught. It is about INTENTION - doing things purposefully. That is not just "on purpose" but also "with purpose". It is the difference between wandering and traveling, between industry and productivity...
This resonates with me because challenge course work has such an emphasis on student driven outcomes, or letting the participant define what a "successful" experience is, because very often the outcome of these intense learning experiences is not what we originally intended. Very often there is a process of discovery involved, not just of the challenge and the environment, but of the self. I cannot help facilitate communication skills if the participant does not know that they are communicating, or what they are communicating. It is one thing to describe for them that the challenge activity involves lifting others and moving them safely, it is another to enable them with the tools to ask one another for help, or provide help that is not judgmental. They may feel they are asking clearly, but for another that clarity can come across as "not nicely"... I then need to change the focus of our "outcome" to diversity, before I reach a place where we are communicating and can be physically safe. The power of this work is that the participant has an emotional and galvanizing experience, but we cannot neccesarily predict which aspect of the experience will be pivotal for each particular participant. There are certainly "rules" and theories of group dynamics that shape how we do what we do, creating shared experiences (forming, storming) before establishing rules (norming), and only then testing their mettle (performing). But these play out in very different ways, because we are dealing with humans, and people are diverse.
There is a basic conflict between the way I currently teach and "traditional" classroom teaching (the way I used to teach), specifically in this idea of intent/ purpose. Because of this need to "know what you are looking for", all teaching is considered "outcome specific". The educational profession spends LOTS of time talking about "measurable and observable" outcomes - meaning that what ever I am "grading" has to be something I can actually observe and that I have some way of telling "how much" of it I have. This is where the IEP langauge comes from about "Bob will raise his hand to be called upon instead of blurting out 5 out of 7 times". The idea here is that I can't "give a test" on it if I didn't teach it in the first place, or give a grade based upon some criteria the student knew nothing about. Of course, that sounds incredibly reasonable, but the application leaves a sense of falseness and artificiality. Can't a child demonstrate understanding of math by running a register rather than completing a worksheet? Can't a child demonstrate understanding of language by making a film with dialogue instead of writing an essay? Can't a child demonstrate an understanding of history by reenacting instead of answering 90% of a multiple choice test "correctly"? Doesn't the child demonstrate an understand of the process of life science by taking appropriate care of the guinea pig? How do we find that place where we can let kids learn how their brains work and then demonstrate that understanding (growth) in such a way that we (the adults around them) agree that we "saw" it?
This gap between "measurable outcomes" and meeting neural diversity is at the heart of the experiential education philosophy. In the Autism community, Neurodiversity and Nuerotypical are charged words, indicating those people that are not diagnosed as being on the Autism Spectrum - with the connotation being that NT people are in some fashion closer to the mathematical center in a statistical analysis of the function of human brains. I do, in some ways, mean this definition, but broader. In my experience, we are each and every one diverse - not only within our selves (our experiences over time and in particular situations), but also from one to another (we each "handle" stresses differently and show evidence that we experience the world in a distinctive manner). Really, I mean "nuerodiversity" without the use of a mathematical analysis, only with the recognition that the body of data points is VAST, with little to no overlap. We are each and every one a separate and unique entity, with some variation of the possible outcomes to be had when nurture is combined with nature. How do we respect that we all have to know what the people around us are talking about (or communicating about) while respecting that each of us is biologically (and, I would argue, divinely) designed to be a singular manifestation of energy? How do we all "get on the same page" when we are in different books? In experiential education, our answer is that the learner (participant) gets to decide what they got out of it. The participant decides that the outcome is in some way measurable to them selves. "Grade" themselves? That is pretty blasphemous in a traditional educational setting. Of course every kid will give themselves an A! The grades would be meaningless if they were given by the student, right?
Many of the workshops I took this week looked at how to cross these differences. 3 of them were specifically titled with verbiage about getting schools and camps to work together, but a large part of the industry is about how to teach more effectively, and how to help academics see us as teaching more effectively. Somehow we must breach this chasm between self-assessment and "objective" assessment, between internal motivation and external motivation, between student driven learning and objective based learning, between "I know I got better" and "you can see that I got better". Many critics of education (myself included) like to point out how articificial the school environment is - that students will not be working with same-aged peers in the workplace, that they will be assessed by performance not written tests. But ultimately, adults in the workplace still need to achieve tasks (outside assessment) while growing their skills (self assessment). We, as a society, and educators, as a profession, need to be opening dialogue on these ideas. I think the simple answer may be "respect diversity - live an let live". The answer maybe that we need all of us, in all our great variability, to make the world as a whole "work".
The second lesson I took from shell collecting today was about history. I returned to the beach in the afternoon (I was trying to be smart and avoid a sunburn, for once). My afternoon excursion was shaped by the fact that a dense fog rolled over the island, obscuring the beach almost completely. The lifeguard tower was invisible from the pier. While I was disappointed by the sun's "disappearance", the limited visibility forced me to look at what was right in front of me. I got to watch a sandpiper almost run into me, and a gull pull a tasty nugget from the surf (I got to see the shell it was in). And I looked again at the shells rolling in the surf. I thought again about the great many little lives that are cummulated in that pile of sand - and then scale overtook me again (funny how that happens at the beach). As I took photos of the shells, I was struck with what you see when you get close versus when you step back. The grains of sand on the beach are not little pieces of rock, they are little pieces of shells. As you look at the sand you see shells in various states of decay. Each life is lived and ended on the bones of its ancestors... History is written in each grain, and the present is too. The sand is shaped by the footprints of the birds, the sandcastles of the children, the depth of the waves. It is as if the past and present are in the same place at the same time...
If past & present can be simultaneous, can the future be too?
My articulation is exhausted for this night. Revelation and insight chase each other around my thoughts. I think I'll solve this one another day...
Hopefully I will reboot again. I called this post "rebooting" because none of these ideas are novel to me, they have crossed my mind before, but sometimes you need to turn the computer off to get all the systems to reengage again. Sometimes you just have to rest and reboot.
- Facebook post 2/3/2012
And so I began my day. At 7:45 am I went to the beach and watched world wake up.
I am VERY lucky. My husband and my mother have both given me emotional permission to take 1 whole day to just be at the beach in Florida after the ACCT conference. I love people, and I love learning, but I also need to have time to process & reflect. Don't get me wrong. I have checked facebook all day, even responded to some emails, spoke warmly with the hotel clerk, talked to many artisans along the pier, and had a conversation about the weather and dogs with a lady from Maryland resting on a bench. I will never be a social recluse...
But I also just sat and watched and rested. I saw the cormorants posed along the tops of poles and rocks, drying their wings in the rising sun. I watched the gulls frantically gather when they thought someone had a tasty morsel, and then nap on one leg until beach goers unconsciously walked over them to set up chairs. I watched pelicans use their size to bully gulls off the poles, and then sweep their great wings open as they dropped off the pole to the water in search of breakfast. I watched the sandpipers scurry and search through the crashing surf for tasty yummies, fabulously intent, yet multi-tasking; it was as if I could here their minds running at ADHD speeds as they tried to be negotiate the delicate task of finding the critters rolled up by the tide but not let the water catch them. I watched the locals, mostly elderly, take their morning constitutional, occasionally passed by joggers, along the water's edge where the sand is firmer. I watched several older gentlemen deeply involved in treasure hunting with their metal detectors and sand-sifting baskets. I watched as all those people along the beach stopped and directed their attention to the water, and followed their gaze to the pod of dolphins galavanting in the surf between the beach and the poles. I watched the lifeguard come on duty, and set up all his equipment and tidy up the stand area. I watched a large fish (maybe 6-7 inches) with big sweeping wings come very close to my feet, and then realized he was stalking a much smaller fish who was hiding in my shadow. I have never in my whole life seen live fish within arms distance in the water of a beach. I relished the heat of the sun on my skin, the cold the water in my legs, the grit and cool heaviness of the sand on my feet.
And I collected shells. I did so because as I watched all these people on the beach, they were all collecting shells. Even those who were clearly locals or were intent on exercising would stop occasionally and collect shells. The only people I did not see pick up shells were the lifeguard and the metal detector guys. It occurred to me that it might be a good way for me to find something to take home to my children. The thought of my children, of course, made me think about what I could teach from a shell collection, so I wandered around for a while trying to find shells that inspired a teachable moment.
I found many with different vibrant colors and shapes (diversity), and others beached white (solar power discussion). I found some with a pearly sheen and others more like procelian (chemical composition). I found a chunk with barnacles on it, and one large one that had circles where the barnacles used to be (ecosystems & erosion). I found some that had holes or grooves where rolling through the surf had started turning them into sand, and others broken into pieces (erosion).
And then I reached a point where I realized that every single shell had a teachable moment in it. Each one of those shells and shell fragments housed an animal, told the story of a life.
And there were SO MANY of them! So many that even though every body was taking them, the beach was not diminished...
I had a little epiphany... As I looked and looked, and was overwhelmed with the breadth of options that laid on the ground before me, I suddenly realized I couldn't see it anymore. I realized I could not complete my task (finding shells), because I did not know what to look for.
You have to know what you are looking for in order to find it. Without knowing what you are looking for, you will not find it, even if it is in your hands, because you will not have a name for it.
In teaching we call this "setting the objective". That is why the classroom teacher is required to write the objectives on the board each day, and that is why you can't write the lesson until you know what outcome you expect, and that is why you can only assess after you've determined what you have taught. It is about INTENTION - doing things purposefully. That is not just "on purpose" but also "with purpose". It is the difference between wandering and traveling, between industry and productivity...
This resonates with me because challenge course work has such an emphasis on student driven outcomes, or letting the participant define what a "successful" experience is, because very often the outcome of these intense learning experiences is not what we originally intended. Very often there is a process of discovery involved, not just of the challenge and the environment, but of the self. I cannot help facilitate communication skills if the participant does not know that they are communicating, or what they are communicating. It is one thing to describe for them that the challenge activity involves lifting others and moving them safely, it is another to enable them with the tools to ask one another for help, or provide help that is not judgmental. They may feel they are asking clearly, but for another that clarity can come across as "not nicely"... I then need to change the focus of our "outcome" to diversity, before I reach a place where we are communicating and can be physically safe. The power of this work is that the participant has an emotional and galvanizing experience, but we cannot neccesarily predict which aspect of the experience will be pivotal for each particular participant. There are certainly "rules" and theories of group dynamics that shape how we do what we do, creating shared experiences (forming, storming) before establishing rules (norming), and only then testing their mettle (performing). But these play out in very different ways, because we are dealing with humans, and people are diverse.
There is a basic conflict between the way I currently teach and "traditional" classroom teaching (the way I used to teach), specifically in this idea of intent/ purpose. Because of this need to "know what you are looking for", all teaching is considered "outcome specific". The educational profession spends LOTS of time talking about "measurable and observable" outcomes - meaning that what ever I am "grading" has to be something I can actually observe and that I have some way of telling "how much" of it I have. This is where the IEP langauge comes from about "Bob will raise his hand to be called upon instead of blurting out 5 out of 7 times". The idea here is that I can't "give a test" on it if I didn't teach it in the first place, or give a grade based upon some criteria the student knew nothing about. Of course, that sounds incredibly reasonable, but the application leaves a sense of falseness and artificiality. Can't a child demonstrate understanding of math by running a register rather than completing a worksheet? Can't a child demonstrate understanding of language by making a film with dialogue instead of writing an essay? Can't a child demonstrate an understanding of history by reenacting instead of answering 90% of a multiple choice test "correctly"? Doesn't the child demonstrate an understand of the process of life science by taking appropriate care of the guinea pig? How do we find that place where we can let kids learn how their brains work and then demonstrate that understanding (growth) in such a way that we (the adults around them) agree that we "saw" it?
This gap between "measurable outcomes" and meeting neural diversity is at the heart of the experiential education philosophy. In the Autism community, Neurodiversity and Nuerotypical are charged words, indicating those people that are not diagnosed as being on the Autism Spectrum - with the connotation being that NT people are in some fashion closer to the mathematical center in a statistical analysis of the function of human brains. I do, in some ways, mean this definition, but broader. In my experience, we are each and every one diverse - not only within our selves (our experiences over time and in particular situations), but also from one to another (we each "handle" stresses differently and show evidence that we experience the world in a distinctive manner). Really, I mean "nuerodiversity" without the use of a mathematical analysis, only with the recognition that the body of data points is VAST, with little to no overlap. We are each and every one a separate and unique entity, with some variation of the possible outcomes to be had when nurture is combined with nature. How do we respect that we all have to know what the people around us are talking about (or communicating about) while respecting that each of us is biologically (and, I would argue, divinely) designed to be a singular manifestation of energy? How do we all "get on the same page" when we are in different books? In experiential education, our answer is that the learner (participant) gets to decide what they got out of it. The participant decides that the outcome is in some way measurable to them selves. "Grade" themselves? That is pretty blasphemous in a traditional educational setting. Of course every kid will give themselves an A! The grades would be meaningless if they were given by the student, right?
Many of the workshops I took this week looked at how to cross these differences. 3 of them were specifically titled with verbiage about getting schools and camps to work together, but a large part of the industry is about how to teach more effectively, and how to help academics see us as teaching more effectively. Somehow we must breach this chasm between self-assessment and "objective" assessment, between internal motivation and external motivation, between student driven learning and objective based learning, between "I know I got better" and "you can see that I got better". Many critics of education (myself included) like to point out how articificial the school environment is - that students will not be working with same-aged peers in the workplace, that they will be assessed by performance not written tests. But ultimately, adults in the workplace still need to achieve tasks (outside assessment) while growing their skills (self assessment). We, as a society, and educators, as a profession, need to be opening dialogue on these ideas. I think the simple answer may be "respect diversity - live an let live". The answer maybe that we need all of us, in all our great variability, to make the world as a whole "work".
The second lesson I took from shell collecting today was about history. I returned to the beach in the afternoon (I was trying to be smart and avoid a sunburn, for once). My afternoon excursion was shaped by the fact that a dense fog rolled over the island, obscuring the beach almost completely. The lifeguard tower was invisible from the pier. While I was disappointed by the sun's "disappearance", the limited visibility forced me to look at what was right in front of me. I got to watch a sandpiper almost run into me, and a gull pull a tasty nugget from the surf (I got to see the shell it was in). And I looked again at the shells rolling in the surf. I thought again about the great many little lives that are cummulated in that pile of sand - and then scale overtook me again (funny how that happens at the beach). As I took photos of the shells, I was struck with what you see when you get close versus when you step back. The grains of sand on the beach are not little pieces of rock, they are little pieces of shells. As you look at the sand you see shells in various states of decay. Each life is lived and ended on the bones of its ancestors... History is written in each grain, and the present is too. The sand is shaped by the footprints of the birds, the sandcastles of the children, the depth of the waves. It is as if the past and present are in the same place at the same time...
If past & present can be simultaneous, can the future be too?
My articulation is exhausted for this night. Revelation and insight chase each other around my thoughts. I think I'll solve this one another day...
Hopefully I will reboot again. I called this post "rebooting" because none of these ideas are novel to me, they have crossed my mind before, but sometimes you need to turn the computer off to get all the systems to reengage again. Sometimes you just have to rest and reboot.
Monday, November 18, 2013
This is Autism...
As every member of our community says, "If you've met ONE person with Autism, you've met ONE person with Autism." Autism is a SPECTRUM "disorder" because it is effects every person so very differently. I tend to think is Autism (and life) as a pointillism painting, or like Connectiles (made by Project Adventure or Wilderdom Store)... each point is complete, whole in and of itself, but becomes glorified and meaningful when it is placed within context. I can inherently ONLY speak to how Autism lives with us, in our family...
The story of how we got a diagnosis convoluted and painful, like MANY families. If you're interested in all the gory details check out our Facebook Page JT's Journey and read the Notes. Someday I am sure I'll compile them onto a book - but this is not that day. To summarize: We bought into the fear and doom. We were afraid we would scar him for life with a <<LABEL>> (hear that in an echo-y voice from a horror movie), and we were afraid that he'd be a victim of society if we didn't (no supports at school, no supports when he turned 18, him stuck a dependent his whole life). We sought a medical diagnosis, feeling that it was more "legitimate" that an educational one (which we found to be True), and found it useless in the educational system. We found a convoluted and antagonistic relationship between the medical establishment and the educational establishment, and felt shafted. We tried to be cooperative, informed, and involved. We were warriors and beseechers, to no avail. We rushed into intervention preschool, and stayed in school to start 1st grade, but it was not a situation that was healthy or sustainable for us. A part of that is our Autism, but a part of that is just our general community. (As time passes we meet more and more members of our community who find the schools unable to create an environment where their "normal" kids thrive either. We eventually opted to homeschool.)
The medical tale is a reflection of our stress with the educational one. Our original diagnosis was "Asperger's" or "High-functioning", but it was also called "Severe Asperger's" by more than one therapist we saw. Our Autism includes language, so we are considered "lucky", and most adults find my kid to be pretty entertaining. He uses LOTS of language, with advanced vocabulary and creative character developments. There's not too much plot action, but man can he regale you with detail! We noticed from an early age that understanding all that language took a LOT of detective work from us. Much of it was recited (echolalia is the clinical term) from TV, or radio, or books, or conversations. We needed knowledge of the original context in which he heard it to try to divine meaning. Over time it became "scripting", and that evolved into more sustained/ original conversations. But do NOT get the idea that having a conversation with this child is "normal". Much of his info is still recited from National Geographic - more of a dissertation in nature, not a give and take conversation. As he has grew into playing with his sibling, he often told her exactly what she was supposed to respond. He often becomes overwhelmed with distress about a particular idea and it still takes lots of detective work to find the association that is causing him the distress. Over time the pediatrician has changed the label from scripting to stuttering. He starts sentences over all the time. He talks to him self almost incessantly, a running narration of his actions and mind wanderings (very useful when he was younger - he would inadvertently announce every time he was about to open something he wasn't supposed to. As he's aged the leaps are harder to follow.) And he LOVES accents - has gone through periods where he spoke with an Aussie accent (Thanks to Ice Age Dawn of the Dinosaurs), a Scottish accent (Thanks to Open Season), and kind of Transylvanian accent (Thanks to Phineas & Ferb). He tries on LOTS of different pronunciations... It has been particularly useful in helping him cope with his sister's Auditory Processing issues and slight language "delay" (she was missing some letters for a while).
We have had 4+ years of occupational therapy (OT). He kinda learned to bounce & catch a ball. He sorta learned to skip. He eventually learned to tie shoes. He still has not conquered riding a bike or unbuttoning his pants. We have finally decided to take a long break from therapy so that he stops internalizing that he is "broken". My boy is charming, but definitely awkward. Dyspraxia is the clinical name. He has a "motor-skill delay" - he just looks like a puppy all the time - like he's got too many legs, or like he is trying to operate his body from a remote location. Sensory Processing Disorder is another "problem" OT was trying to "fix". Hand dryers in public bathrooms were an object of abject fear for us for a loooooong time. Eating is STILL a Contact Sport for us on many days. We see LOTS of flapping and pacing, and LOADS of full contact cuddling. One therapist called him a "melter"... just pushing against something or someone ALL the time to try to find his body in space. If my kid were a Labrador or a Rottie we would call him a "lover". The Sensory Integration therapy (OT) has provided us a language and strategies to help him meet his sensory needs. Our goal from the outset was to provide him with "socially acceptable" (or more socially acceptable) ways to meet these innate needs. The truth is that about every 6 to 8 weeks we see some new behavior manifest. Now we can see the patterns of how they relate to the seasons and growth spurts. When he was little those behaviors were sometimes frightening because we didn't know how to help. But our anxiety only added to his. A rash would become weeping lesions. Restarting sentences led to head banging. Pacing led to slamming into walls. And being a victim of bullying led to verbal aggression. He developed a rare untreatable autoimmune disorder. Eventually, threats of suicide from a 6 year old showed that we were NOT supporting him in the ways he needed!
We learned to opt out of the emergency mentality. We took time to just slow down, really OBSERVE him. We started back where we were when he was an infant - a really cool kid who did really cool stuff. He surprised us. He laughed, he played, and he was trying SO HARD to connect with us!! When we came back to a place where he was just... himself... everything got OK. In fact, it got awesome! It was clear that he was working hard to meet our expectations of him as best he could. It was clear that we could develop our own vocabulary for what he experienced, and it was clear that we needed to focus on strengths, not deficits. Look, I am not perfect person either. I have my own meltdowns and sensory overloads. There are days and times I just don't cope (deflect to an obsession topic - like knitting).
My Autistic son is HUMAN... JUST LIKE ME. His experience is distinctly his own, but it is not broken or cursed! There are no pieces missing... just ones he sees that we don't... yet. Thank GOD he is not perfect, because then he'd be an angel and God would have to take him back! I want to learn with and from the gift of this child's life. It does not matter what label you, or the school system, or Autism Speaks puts on his differences; he would have them anyway, and they would be exactly what he needs to learn in life. HE IS A FULL HUMAN, living, everyday, the full spectrum of the human experience - he is learning to be the best him he can possibly be! THAT is what Autism is...
The story of how we got a diagnosis convoluted and painful, like MANY families. If you're interested in all the gory details check out our Facebook Page JT's Journey and read the Notes. Someday I am sure I'll compile them onto a book - but this is not that day. To summarize: We bought into the fear and doom. We were afraid we would scar him for life with a <<LABEL>> (hear that in an echo-y voice from a horror movie), and we were afraid that he'd be a victim of society if we didn't (no supports at school, no supports when he turned 18, him stuck a dependent his whole life). We sought a medical diagnosis, feeling that it was more "legitimate" that an educational one (which we found to be True), and found it useless in the educational system. We found a convoluted and antagonistic relationship between the medical establishment and the educational establishment, and felt shafted. We tried to be cooperative, informed, and involved. We were warriors and beseechers, to no avail. We rushed into intervention preschool, and stayed in school to start 1st grade, but it was not a situation that was healthy or sustainable for us. A part of that is our Autism, but a part of that is just our general community. (As time passes we meet more and more members of our community who find the schools unable to create an environment where their "normal" kids thrive either. We eventually opted to homeschool.)
The medical tale is a reflection of our stress with the educational one. Our original diagnosis was "Asperger's" or "High-functioning", but it was also called "Severe Asperger's" by more than one therapist we saw. Our Autism includes language, so we are considered "lucky", and most adults find my kid to be pretty entertaining. He uses LOTS of language, with advanced vocabulary and creative character developments. There's not too much plot action, but man can he regale you with detail! We noticed from an early age that understanding all that language took a LOT of detective work from us. Much of it was recited (echolalia is the clinical term) from TV, or radio, or books, or conversations. We needed knowledge of the original context in which he heard it to try to divine meaning. Over time it became "scripting", and that evolved into more sustained/ original conversations. But do NOT get the idea that having a conversation with this child is "normal". Much of his info is still recited from National Geographic - more of a dissertation in nature, not a give and take conversation. As he has grew into playing with his sibling, he often told her exactly what she was supposed to respond. He often becomes overwhelmed with distress about a particular idea and it still takes lots of detective work to find the association that is causing him the distress. Over time the pediatrician has changed the label from scripting to stuttering. He starts sentences over all the time. He talks to him self almost incessantly, a running narration of his actions and mind wanderings (very useful when he was younger - he would inadvertently announce every time he was about to open something he wasn't supposed to. As he's aged the leaps are harder to follow.) And he LOVES accents - has gone through periods where he spoke with an Aussie accent (Thanks to Ice Age Dawn of the Dinosaurs), a Scottish accent (Thanks to Open Season), and kind of Transylvanian accent (Thanks to Phineas & Ferb). He tries on LOTS of different pronunciations... It has been particularly useful in helping him cope with his sister's Auditory Processing issues and slight language "delay" (she was missing some letters for a while).
We have had 4+ years of occupational therapy (OT). He kinda learned to bounce & catch a ball. He sorta learned to skip. He eventually learned to tie shoes. He still has not conquered riding a bike or unbuttoning his pants. We have finally decided to take a long break from therapy so that he stops internalizing that he is "broken". My boy is charming, but definitely awkward. Dyspraxia is the clinical name. He has a "motor-skill delay" - he just looks like a puppy all the time - like he's got too many legs, or like he is trying to operate his body from a remote location. Sensory Processing Disorder is another "problem" OT was trying to "fix". Hand dryers in public bathrooms were an object of abject fear for us for a loooooong time. Eating is STILL a Contact Sport for us on many days. We see LOTS of flapping and pacing, and LOADS of full contact cuddling. One therapist called him a "melter"... just pushing against something or someone ALL the time to try to find his body in space. If my kid were a Labrador or a Rottie we would call him a "lover". The Sensory Integration therapy (OT) has provided us a language and strategies to help him meet his sensory needs. Our goal from the outset was to provide him with "socially acceptable" (or more socially acceptable) ways to meet these innate needs. The truth is that about every 6 to 8 weeks we see some new behavior manifest. Now we can see the patterns of how they relate to the seasons and growth spurts. When he was little those behaviors were sometimes frightening because we didn't know how to help. But our anxiety only added to his. A rash would become weeping lesions. Restarting sentences led to head banging. Pacing led to slamming into walls. And being a victim of bullying led to verbal aggression. He developed a rare untreatable autoimmune disorder. Eventually, threats of suicide from a 6 year old showed that we were NOT supporting him in the ways he needed!
We learned to opt out of the emergency mentality. We took time to just slow down, really OBSERVE him. We started back where we were when he was an infant - a really cool kid who did really cool stuff. He surprised us. He laughed, he played, and he was trying SO HARD to connect with us!! When we came back to a place where he was just... himself... everything got OK. In fact, it got awesome! It was clear that he was working hard to meet our expectations of him as best he could. It was clear that we could develop our own vocabulary for what he experienced, and it was clear that we needed to focus on strengths, not deficits. Look, I am not perfect person either. I have my own meltdowns and sensory overloads. There are days and times I just don't cope (deflect to an obsession topic - like knitting).
My Autistic son is HUMAN... JUST LIKE ME. His experience is distinctly his own, but it is not broken or cursed! There are no pieces missing... just ones he sees that we don't... yet. Thank GOD he is not perfect, because then he'd be an angel and God would have to take him back! I want to learn with and from the gift of this child's life. It does not matter what label you, or the school system, or Autism Speaks puts on his differences; he would have them anyway, and they would be exactly what he needs to learn in life. HE IS A FULL HUMAN, living, everyday, the full spectrum of the human experience - he is learning to be the best him he can possibly be! THAT is what Autism is...
Wednesday, September 18, 2013
On suicide and regrets...
Post been going around: The Things We Do Not Say
[To provide context, the autism community is reeling with several suicide-murder attempts by parents of autistic children in the past weeks. It has ignited much discussion over resources and how difficult autism really is, and responses from Autistic adults of how dehumanized these events and discussions make them feel.]
My response:
Thank you. You have found expression for what I have wanted to say. To ignore the jealousy (of others's abilities) or the grief (over things you'll never have) is to ignore the very humanity of it [the experience of being disabled, of being human]. "Normal" people have struggled with these [emotions] for eons - as testified to in literature in all languages. Is it any sin that those who find themselves "outside the circle" know it and wish differently? I recognize that if my child was someone else [not disabled], we would just have different battles to face, other strengths and weaknesses and abilities to conquer and support. I recognize that the richness of their life is determined by their challenges - but I'm not going to pretend that I don't like the challenges we got. To do so would minimize them, and minimize their struggle. I will sorrow with them, and find strength with them, because THAT is what living is about...
I have really been arguing with myself about acceptance and therapy and compensation skills and guilt and what parts of me and my autistic kid and my willful kid and my husband are OK to live with, and what aren't. Some Autistic adults are talking about how evil and hurtful therapy is. How far are we supposed to bend to "socially acceptable", and how much are we just supposed to live with (accept)?
We (our family) have come up with the mantra: You can be mad, but you can't be mean.
As I have said before, part of the autism journey (for us) is seeing that we ARE like that too, remembering our own experiences of isolation and weirdness and sensory odd and uncontrollable outbursts... It is only now, as we watch our children struggle that my husband and I are seeing roads to control these things in ourselves - alternate routes, if you will - driven by our need to equip our children to be "better".
I struggle with my self. What am I worth? How odd am I? Where is "crazy"? Where is "still ok"? What IS it that makes me strong? What kind of strength am I supposed to have? When do I give up? Why can't I seem to see what others see? Why do things seem so hard for me that are simple to others? How come I just don't "see" the same "sense" that others do? Why do I do things that frustrate me and others? How much of an abrasive personality is forgivable? When am I supposed to stand up for myself? When am I supposed to bow to the needs of others? Who does value me? What do they value me for? Why do I care? When will I see my own worth? How do I find that value? Are my thorns bigger than my roses? Is my rose awesome enough to outshine all these thorns? Why can't I be like the other people I see?
I wish I was as self confident as...
I wish I had the motivation of...
I wish I could put the pieces together like...
I wish I could just stop...
I wish I could just start...
I wish I had the resources of...
I wish that wasn't scary to me...
I wish my body would do that...
I wish someone loved me like that...
I wish chocolate really was a vegetable...
I just wish things were different...
But, they aren't.
I will have to live with whatever is dealt. And I have to do it in a way that will uphold the principles I expect of myself and the responsibilities I have to others.
In other words, I need to FIND a way to respect myself at the end of the day (or at least the end of the week).
Denying that I feel jealousy or confusion or grief will NOT help me find that respect. Yes, I have to accept that I have flaws, and that those around me have flaws, and that my situation has flaws. And I have decided (based on years of talking to people and reading lots of stuff) that every one, every life, every path, every being, has $h!% happen. All of my wishful thinking will not escape these feelings, just change the context, the details...
I have to find a way to genuinely assess (which is almost always done by comparison) that which I DO have, and then find a way to make it fit into what opens to me (finding successes through the regrets and wishes and if only).
I have faced those demons, that place where I am convinced that I have no value, that my efforts are in vain, that effecting positive change around me is simply out of my ability, that I have outlived my usefulness... I have looked at the choice to commit suicide, more than once. I have even made the effort more than once. I am confident that I will consider how my death will improve the world around me again. I am confident that I will be totally and completely overwhelmed with my failings, disappointed with my inability to meet my own expectations, again. I will fight the demons again.
My autistic son, of just 8 years has already expressed this same sentiment. It is terrifying to hear a 7 year old explain to you why suicide is an intelligent alternative. He says to me what my own heart has said before. We actually fought about it last week, again. His behavior did not met what I needed of him... he was overwhelmed with disappointment in himself, and he reprimanded me for stopping him from attempting to drown himself.
I am sure he wishes he was someone else, something else, somehow better able to meet my expectations. Will the world now say that it is my fault for having such "unreasonable" expectations of him? Did I not "accept" him enough? Or is it not my task, as a parent, to show him where the lines of acceptability are? Don't I need to label and practice with him at home those skills he will need outside the home? - like resourcefulness, and hard work, and dedication?
He may have to fight to own these skills in some arenas, even though his obsessive drive will make them a non issue in others... I know.
And it is only through open, genuine expression, and experience, of all the richness of human emotions that I will be able to face those demons with self-respect, to say to them that lows come with highs, and that comparison always has two sides, and that success in one place IS transferable to another (Aspie trait again!).
And I have to know that I am NOT ALONE. Just as my son needs to KNOW he is not alone! People, both like him and completely different from him have been experiencing these same feelings for EVER... and they will continue to do so. I hope many keep saying What Should Not Be Said... so that we can find connections instead of deny them.
[To provide context, the autism community is reeling with several suicide-murder attempts by parents of autistic children in the past weeks. It has ignited much discussion over resources and how difficult autism really is, and responses from Autistic adults of how dehumanized these events and discussions make them feel.]
My response:
Thank you. You have found expression for what I have wanted to say. To ignore the jealousy (of others's abilities) or the grief (over things you'll never have) is to ignore the very humanity of it [the experience of being disabled, of being human]. "Normal" people have struggled with these [emotions] for eons - as testified to in literature in all languages. Is it any sin that those who find themselves "outside the circle" know it and wish differently? I recognize that if my child was someone else [not disabled], we would just have different battles to face, other strengths and weaknesses and abilities to conquer and support. I recognize that the richness of their life is determined by their challenges - but I'm not going to pretend that I don't like the challenges we got. To do so would minimize them, and minimize their struggle. I will sorrow with them, and find strength with them, because THAT is what living is about...
I have really been arguing with myself about acceptance and therapy and compensation skills and guilt and what parts of me and my autistic kid and my willful kid and my husband are OK to live with, and what aren't. Some Autistic adults are talking about how evil and hurtful therapy is. How far are we supposed to bend to "socially acceptable", and how much are we just supposed to live with (accept)?
We (our family) have come up with the mantra: You can be mad, but you can't be mean.
As I have said before, part of the autism journey (for us) is seeing that we ARE like that too, remembering our own experiences of isolation and weirdness and sensory odd and uncontrollable outbursts... It is only now, as we watch our children struggle that my husband and I are seeing roads to control these things in ourselves - alternate routes, if you will - driven by our need to equip our children to be "better".
I struggle with my self. What am I worth? How odd am I? Where is "crazy"? Where is "still ok"? What IS it that makes me strong? What kind of strength am I supposed to have? When do I give up? Why can't I seem to see what others see? Why do things seem so hard for me that are simple to others? How come I just don't "see" the same "sense" that others do? Why do I do things that frustrate me and others? How much of an abrasive personality is forgivable? When am I supposed to stand up for myself? When am I supposed to bow to the needs of others? Who does value me? What do they value me for? Why do I care? When will I see my own worth? How do I find that value? Are my thorns bigger than my roses? Is my rose awesome enough to outshine all these thorns? Why can't I be like the other people I see?
I wish I was as self confident as...
I wish I had the motivation of...
I wish I could put the pieces together like...
I wish I could just stop...
I wish I could just start...
I wish I had the resources of...
I wish that wasn't scary to me...
I wish my body would do that...
I wish someone loved me like that...
I wish chocolate really was a vegetable...
I just wish things were different...
But, they aren't.
I will have to live with whatever is dealt. And I have to do it in a way that will uphold the principles I expect of myself and the responsibilities I have to others.
In other words, I need to FIND a way to respect myself at the end of the day (or at least the end of the week).
Denying that I feel jealousy or confusion or grief will NOT help me find that respect. Yes, I have to accept that I have flaws, and that those around me have flaws, and that my situation has flaws. And I have decided (based on years of talking to people and reading lots of stuff) that every one, every life, every path, every being, has $h!% happen. All of my wishful thinking will not escape these feelings, just change the context, the details...
I have to find a way to genuinely assess (which is almost always done by comparison) that which I DO have, and then find a way to make it fit into what opens to me (finding successes through the regrets and wishes and if only).
I have faced those demons, that place where I am convinced that I have no value, that my efforts are in vain, that effecting positive change around me is simply out of my ability, that I have outlived my usefulness... I have looked at the choice to commit suicide, more than once. I have even made the effort more than once. I am confident that I will consider how my death will improve the world around me again. I am confident that I will be totally and completely overwhelmed with my failings, disappointed with my inability to meet my own expectations, again. I will fight the demons again.
My autistic son, of just 8 years has already expressed this same sentiment. It is terrifying to hear a 7 year old explain to you why suicide is an intelligent alternative. He says to me what my own heart has said before. We actually fought about it last week, again. His behavior did not met what I needed of him... he was overwhelmed with disappointment in himself, and he reprimanded me for stopping him from attempting to drown himself.
I am sure he wishes he was someone else, something else, somehow better able to meet my expectations. Will the world now say that it is my fault for having such "unreasonable" expectations of him? Did I not "accept" him enough? Or is it not my task, as a parent, to show him where the lines of acceptability are? Don't I need to label and practice with him at home those skills he will need outside the home? - like resourcefulness, and hard work, and dedication?
He may have to fight to own these skills in some arenas, even though his obsessive drive will make them a non issue in others... I know.
And it is only through open, genuine expression, and experience, of all the richness of human emotions that I will be able to face those demons with self-respect, to say to them that lows come with highs, and that comparison always has two sides, and that success in one place IS transferable to another (Aspie trait again!).
And I have to know that I am NOT ALONE. Just as my son needs to KNOW he is not alone! People, both like him and completely different from him have been experiencing these same feelings for EVER... and they will continue to do so. I hope many keep saying What Should Not Be Said... so that we can find connections instead of deny them.
Monday, September 16, 2013
a weeked with my husband...
So the truth is that my husband and I do not really have "domestic" bliss... in fact we are both wretched house keepers. We actually come from long lines of hoarders (mine are even more honorable than his) and tasks tend to get left until someone looks at them and thinks "ACK! well I guess no one else is gonna do this"
Our relationship is built on shared experiences, not really shared space...
So when my 1st weekend OFF in 4 months arrived, we started discussing what to do with our day. Naturally, there is LOTS to do around the house, and we just need to do it... but instead we decided to "adventurate" (this is the verb we have invented for our family "adventure therapy" excursions).
Let's just drive, sweetheart...
OK. I have not been to Western Maryland, like Cumberland. Let's go there.
OK, sounds good. So should we take stuff? I mean the worst case scenario is that we drive so far we decide to stay...
No, the worst that can happen is that we die in a fiery car crash.
(!!! what? - this from the man who has berated me for YEARS for being overly negative)
Um, well, I wasn't gonna go that far, hon. I was just thinking we should pack sleeping bags and clothes in case we decide to camp or something...
Oh, yeah, that's a good idea.
So we found a change of clothes, and our sleeping bags, even remembered dog food, and got in the truck to go...
First we got a car wash, then we stopped by the Chocolate Bar, but it wasn't open yet (10:30 am), so we went across the shopping center to the organic store and got chips made from hummus and pinto beans. We went up to I-70, and headed West. Then this sign said "take I-68 to Ohio and points west", so we took I-68. I sang along to the radio at the top of my lungs. My husband tried to find a map, eventually found one on his phone that said I-68 doesn't really go to Ohio. We tried to decided if we had ever been on this road before, worked through some old memories, decided that we must have been here once, but we had no memory of it.
And then we got hungry. As approached Cumberland, MD, we saw a sign for "The Crabby Pig" - BBQ and crabs - we are IN! So we got off the interstate - and proceeded to be totally lost. It was apparently the wrong exit. We found the hospital, and then we found "town", and we saw a walking mall type area, and we crossed lots of RR tracks, and finally my husband's GPS put us back on the freeway on a one way entrance, and then took us off at the next exit in this convoluted tangle of ramps. And the restaurant was at the end of the ramp - but parking was not. For those of you who live in Autism households, you can imagine the level of anxiety and snappiness that is building in our vehicle... My husband is on the edge of flipping out... I found an empty gravel lot pretty quick and parked there (even though it was totally unmarked and under an overpass), and we went to eat.
Turns out the Q was AWESOME, and hubby enjoyed his fish. Dog enjoyed our bones and shells. And every waitress in the place keeps stepping outside and staring at something beyond the building... Finally our waitress tells us there is a concert tonight on the waterfront. Apparently the guy is good, has even worked with Martina McBride. And the concert is free. We decided that our joints would enjoy being out of the car, so we will see...
We walked a tad along the canal (C&O) walk, found the Western Maryland Railroad Station (a part of a national park there - that is also the start of the a biking/ hiking trail that goes from Cumberland to Harper's Ferry). There is TONS of cool stuff to do there, and we talked about bringing the kids back, or bringing the scout groups there. We found some lollygag spots, and appreciated them. After a bit, we finally negotiated to go to that walking mall we had seen.
With no directions except the signs on the road to guide us (and the zillion flyers he picked up at the national park), we walked downtown Cumberland. Turns out the town is very interesting. We found the walking area, and the buildings are incredible. Clearly old RR money, lots of desperately intricate 19th century efforts of Conspicuous Consumption mixed with some early 20th century attempts at modernity. They are trying to revive and use these spaces for thriving art community. All the little empty spaces between building and on corners are "parklets", with fountains and benches and greenery. So cute! We found one of the top ten yarn shops in the nation! It was COOL. I need to go back and take classes (already plotting how I can do that). Found a woodworker who makes wooden mushrooms with secret compartments - each one one-of-a-kind and named. When you purchase one, you get to choose a name for the next one. We got Iris for our daughter, and named Leilani for someone else's treasure. We finally decided to stay in town and try that concert, so we walked to a hotel that the brochure said would take dogs, and got their last room. I've never had a dog on the 6th floor before.
We moved the truck to the hotel, and then played on our computers a little (free WiFi!), and then decided to go get food. We found a "grill" on that walking mall, and their drink special: hurricanes!! So we had a few. This is the first outing in which neither of us have needed to drive since college. The dinner was delicious. Hurricanes make my husband happy, and we laughed a lot, just got giggly. I was even able to accept his admonishment that I was getting loud gracefully (because I have finally accepted that I AM loud, and that not everyone is OK with it). We finally got to the concert. The guy was good, and they had chairs out, enough for everyone. And after the first set (that we saw) my husband fell asleep on me. SO we went back to the hotel, where I tried to initiate a conversation while he watched football - but apparently I started snoring between sentences.
The next morning we had no headaches (yeah!) and found Roy Rogers. I absolutely love the Chorizo Burrito - it was Perfect! and then we drove around the city for 30 minutes trying to find the on ramp. We finally found the interstate, and went 2 exits. The waitress had also suggested that we check out Rocky Gap State Park (and casino). The park is absolutely fabulous, again we plotted coming back with the kids or a scout group. We walked thru the casino and ate on their veranda.
I was seriously considering renting a canoe or a paddle board. My husband looked at me and said, "You are so beautiful here, around the water. It is truly your element."
After some soup, we decided to explore the rest of the lake. We drove every road we could find, followed signs to lookouts and pavilions and amphitheaters. We finally found the camp ground, and it has an aviary! we left no nook undiscovered! We looked inside the yurt and the cabins, drove by every campsite (all 200), checked out the beach, found a fresh water oyster shell, saw skunk and bird tracks, watched minnows, saw a water bird hunting the shoreline, watched the dog drink from the clear lake, heard the wedding across the lake, checked out the nature center (got lots of good ideas!), met other dogs...
And then we decided to turn the other way in the road out, not towards the interstate. Within 2 minutes we were in PA. Hmmm... so we kept driving, knowing that eventually we'd hit something... but it seemed it might be a long time... and then a man on a bicycle was approaching, so we slowed down and ... spoke to a stranger (I'm sure you are aghast... I talk to strangers all the time, but Lord forbid my Aspie husband ask for directions!) After all, the guy was in Sunday Khakis and a button down shirt (oohhhhh, dangerous)...
Sir, we are lost. Could you tell us where this road goes?
Well it eventually hits E______. Where are you headed?
We live in Virginia, but we are up for some adventure...
Well, down in the middle of the cove you will see a white church. If you turn right there it will take you Flintstone and the interstate.
Thank you so much, have a great day!
My husband then checked his GPS to be sure the complete stranger did not mislead us... we joked about roving bands of mountain men, and his ridiculous lack of faith in good country people... and we found the interstate. And even adventured on the Historic National Road, until it merged with the interstate.
We stopped at Sideling Hill to see a geological wonder (old rocks when they dynomighted out the interstate) It looks like the hill is glowering on the freeway.
We then went to West Virginia and checked out Capapon State Park.
We drove every inch of road in that park (well, except for the section to the golf club house), and checked out the cabins and shelters, and playgrounds, and... well, everything. It was started by the CCC (Civilian Conservation Corps) in he late 30's, but WWII started before it was finished. So we found a road that went to the summit of the park - 4 states are visible on clear days. It a rather rough gravel road, so kinda slow going. So slow that a squirrel tried to stop us. He just sat in the middle of the road, staring us down... the truck passed right over him and he darted out between the tires! Goob!
We then came home and washed some dishes, started some laundry, and did made a token effort towards domestic bliss...
We really are excellent procrastinators!
Our relationship is built on shared experiences, not really shared space...
So when my 1st weekend OFF in 4 months arrived, we started discussing what to do with our day. Naturally, there is LOTS to do around the house, and we just need to do it... but instead we decided to "adventurate" (this is the verb we have invented for our family "adventure therapy" excursions).
Let's just drive, sweetheart...
OK. I have not been to Western Maryland, like Cumberland. Let's go there.
OK, sounds good. So should we take stuff? I mean the worst case scenario is that we drive so far we decide to stay...
No, the worst that can happen is that we die in a fiery car crash.
(!!! what? - this from the man who has berated me for YEARS for being overly negative)
Um, well, I wasn't gonna go that far, hon. I was just thinking we should pack sleeping bags and clothes in case we decide to camp or something...
Oh, yeah, that's a good idea.
So we found a change of clothes, and our sleeping bags, even remembered dog food, and got in the truck to go...
First we got a car wash, then we stopped by the Chocolate Bar, but it wasn't open yet (10:30 am), so we went across the shopping center to the organic store and got chips made from hummus and pinto beans. We went up to I-70, and headed West. Then this sign said "take I-68 to Ohio and points west", so we took I-68. I sang along to the radio at the top of my lungs. My husband tried to find a map, eventually found one on his phone that said I-68 doesn't really go to Ohio. We tried to decided if we had ever been on this road before, worked through some old memories, decided that we must have been here once, but we had no memory of it.
And then we got hungry. As approached Cumberland, MD, we saw a sign for "The Crabby Pig" - BBQ and crabs - we are IN! So we got off the interstate - and proceeded to be totally lost. It was apparently the wrong exit. We found the hospital, and then we found "town", and we saw a walking mall type area, and we crossed lots of RR tracks, and finally my husband's GPS put us back on the freeway on a one way entrance, and then took us off at the next exit in this convoluted tangle of ramps. And the restaurant was at the end of the ramp - but parking was not. For those of you who live in Autism households, you can imagine the level of anxiety and snappiness that is building in our vehicle... My husband is on the edge of flipping out... I found an empty gravel lot pretty quick and parked there (even though it was totally unmarked and under an overpass), and we went to eat.
Turns out the Q was AWESOME, and hubby enjoyed his fish. Dog enjoyed our bones and shells. And every waitress in the place keeps stepping outside and staring at something beyond the building... Finally our waitress tells us there is a concert tonight on the waterfront. Apparently the guy is good, has even worked with Martina McBride. And the concert is free. We decided that our joints would enjoy being out of the car, so we will see...
We walked a tad along the canal (C&O) walk, found the Western Maryland Railroad Station (a part of a national park there - that is also the start of the a biking/ hiking trail that goes from Cumberland to Harper's Ferry). There is TONS of cool stuff to do there, and we talked about bringing the kids back, or bringing the scout groups there. We found some lollygag spots, and appreciated them. After a bit, we finally negotiated to go to that walking mall we had seen.
With no directions except the signs on the road to guide us (and the zillion flyers he picked up at the national park), we walked downtown Cumberland. Turns out the town is very interesting. We found the walking area, and the buildings are incredible. Clearly old RR money, lots of desperately intricate 19th century efforts of Conspicuous Consumption mixed with some early 20th century attempts at modernity. They are trying to revive and use these spaces for thriving art community. All the little empty spaces between building and on corners are "parklets", with fountains and benches and greenery. So cute! We found one of the top ten yarn shops in the nation! It was COOL. I need to go back and take classes (already plotting how I can do that). Found a woodworker who makes wooden mushrooms with secret compartments - each one one-of-a-kind and named. When you purchase one, you get to choose a name for the next one. We got Iris for our daughter, and named Leilani for someone else's treasure. We finally decided to stay in town and try that concert, so we walked to a hotel that the brochure said would take dogs, and got their last room. I've never had a dog on the 6th floor before.
We moved the truck to the hotel, and then played on our computers a little (free WiFi!), and then decided to go get food. We found a "grill" on that walking mall, and their drink special: hurricanes!! So we had a few. This is the first outing in which neither of us have needed to drive since college. The dinner was delicious. Hurricanes make my husband happy, and we laughed a lot, just got giggly. I was even able to accept his admonishment that I was getting loud gracefully (because I have finally accepted that I AM loud, and that not everyone is OK with it). We finally got to the concert. The guy was good, and they had chairs out, enough for everyone. And after the first set (that we saw) my husband fell asleep on me. SO we went back to the hotel, where I tried to initiate a conversation while he watched football - but apparently I started snoring between sentences.
The next morning we had no headaches (yeah!) and found Roy Rogers. I absolutely love the Chorizo Burrito - it was Perfect! and then we drove around the city for 30 minutes trying to find the on ramp. We finally found the interstate, and went 2 exits. The waitress had also suggested that we check out Rocky Gap State Park (and casino). The park is absolutely fabulous, again we plotted coming back with the kids or a scout group. We walked thru the casino and ate on their veranda.
I was seriously considering renting a canoe or a paddle board. My husband looked at me and said, "You are so beautiful here, around the water. It is truly your element."
After some soup, we decided to explore the rest of the lake. We drove every road we could find, followed signs to lookouts and pavilions and amphitheaters. We finally found the camp ground, and it has an aviary! we left no nook undiscovered! We looked inside the yurt and the cabins, drove by every campsite (all 200), checked out the beach, found a fresh water oyster shell, saw skunk and bird tracks, watched minnows, saw a water bird hunting the shoreline, watched the dog drink from the clear lake, heard the wedding across the lake, checked out the nature center (got lots of good ideas!), met other dogs...
And then we decided to turn the other way in the road out, not towards the interstate. Within 2 minutes we were in PA. Hmmm... so we kept driving, knowing that eventually we'd hit something... but it seemed it might be a long time... and then a man on a bicycle was approaching, so we slowed down and ... spoke to a stranger (I'm sure you are aghast... I talk to strangers all the time, but Lord forbid my Aspie husband ask for directions!) After all, the guy was in Sunday Khakis and a button down shirt (oohhhhh, dangerous)...
Sir, we are lost. Could you tell us where this road goes?
Well it eventually hits E______. Where are you headed?
We live in Virginia, but we are up for some adventure...
Well, down in the middle of the cove you will see a white church. If you turn right there it will take you Flintstone and the interstate.
Thank you so much, have a great day!
My husband then checked his GPS to be sure the complete stranger did not mislead us... we joked about roving bands of mountain men, and his ridiculous lack of faith in good country people... and we found the interstate. And even adventured on the Historic National Road, until it merged with the interstate.
We stopped at Sideling Hill to see a geological wonder (old rocks when they dynomighted out the interstate) It looks like the hill is glowering on the freeway.
We then went to West Virginia and checked out Capapon State Park.
We drove every inch of road in that park (well, except for the section to the golf club house), and checked out the cabins and shelters, and playgrounds, and... well, everything. It was started by the CCC (Civilian Conservation Corps) in he late 30's, but WWII started before it was finished. So we found a road that went to the summit of the park - 4 states are visible on clear days. It a rather rough gravel road, so kinda slow going. So slow that a squirrel tried to stop us. He just sat in the middle of the road, staring us down... the truck passed right over him and he darted out between the tires! Goob!
We then came home and washed some dishes, started some laundry, and did made a token effort towards domestic bliss...
We really are excellent procrastinators!
Wednesday, September 11, 2013
On Free Will and Predestination
I have been deeply struggling lately with these two ideas. I have worked to create a "new me" this summer - to really see myself in a new light and to move in new directions... to invest in the person that I was "made to be"...
I struggled with how selfish that sounded, and how it affected my family and co workers, but then I saw that when I gained confidence, I was able to engender even more confidence (and genuine affection) in those around me. And I started REALLY looking at why I do what I do...
I discovered that happiness IS a choice - that I can try to convince myself there are silver linings, or I can start actively listing them. I can seek the company of those who make me stronger. I can trust what my gut says. I can find ways to respect and love people, or I can choose to hold onto anger... It really IS my attitude (and the availability of chocolate) that determines whether or not I spend my day feeling good or not. I can choose to believe that the compliments are genuine, or I can choose to believe they are just niceties. This summer I learned to finally believe them... I can choose to forgive myself, or I can hold onto the pride that drives me into self-dis-respecting behaviors.
I also discovered that every person I interacted with helped me on this journey. They offered insight or observation on one aspect or another (or a couple) of my inner conversations, even when I did not initiate discussion of those conversations. There were so many times this summer when someone said exactly what I needed to hear, or exactly what I was thinking, or provided me a new window to thoughts and conversations I had in different places. It became clearer and clearer as the summer passed that I am surrounded by those who gently pushed, and lovingly supported and drastically challenged, and deeply loved... me,... even when I didn't know they were doing it, or invite it.
So how much IS Free Will? And how much IS Predestination?
A conversation amongst my staff (who are *somewhat* - ahem - younger than myself) really showed me...
Vastly Mature Lifeguard 1 (19 years old) is dispensing wisdom to Still Growing Lifeguard 2 (16 years old), while Awesomely Sure-of-Himself Lifeguard 3 (19 years old) is listening. My husband and I are hanging out nearby:
LG1: (in resonse to something LG 2 said) But you always have a choice!
LG2: But I didn't! It is what my family expected me to do.
Me: Hon, there are many things you don't get choices on...
LG1: That's not true. You ALWAYS have a choice!
Husband: (chuckle) Ahhh, to be young....
Me: There are many things I did NOT choose. I never chose autism. I do not choose the challenges it brings us...
LG3: Then they were chosen for you.
LG1: But you always have a choice. You could have chosen not to deal with it. I didn't say they were all good options, but you have a choice.
And therein lies my conundrum... What is "chosen for me" and what do "I choose"? Can I have both at the same time?
I have always been convinced that God puts you where He needs you to be, when He needs you to be there. I am a great "connector", seeking (and finding) the threads that weave all the stories together, seeking the perspective that moves pointillism into masterpiece... I can "see" clearly how the road I have walked, with every twist and turn, has lead directly to where I am at - and how each experience provided me with a skill or knowledge that is immediately relative to my life functions. All the players and all the settings are relevant, and it so clear, that now that I am seeking the relevance in any new players/ settings... It is painfully, disgustingly, glaringly obvious that I am shaped by my experience to meet a future goal...
Yet, I also can see how I have clung to some pictures of myself that enabled a victim mentality. I have made excuses for not trying, or for trying only so hard, or for trying too hard, or for trying in the wrong directions. I can see where I chose to be unhappy, or wallow in what was most frustrating, or let fear rule my decisions. I know that I have the ability to control my response - as well as my perceptions. And not just know with my head (saber in Spanish), but know with my heart (conocer in Spanish) - I conozco that what I choose to see is what will show up. I have had so many lessons on that! From miscommunications with family and friends, to setting student expectations, to defining sexiness and self-image... I get to CHOOSE what I see and how I see it.
So how much of my reality is made BY me, and how much is made FOR me?
And why is this question driving me nuts!? I have to deal with it either way - so does it make a difference? Do I get to control my life? Does faith matter if I get to make all the choices?
Or is it about balance - like everything else... I do not get to lay the road, but I get to choose how I climb the fences?
I struggled with how selfish that sounded, and how it affected my family and co workers, but then I saw that when I gained confidence, I was able to engender even more confidence (and genuine affection) in those around me. And I started REALLY looking at why I do what I do...
I discovered that happiness IS a choice - that I can try to convince myself there are silver linings, or I can start actively listing them. I can seek the company of those who make me stronger. I can trust what my gut says. I can find ways to respect and love people, or I can choose to hold onto anger... It really IS my attitude (and the availability of chocolate) that determines whether or not I spend my day feeling good or not. I can choose to believe that the compliments are genuine, or I can choose to believe they are just niceties. This summer I learned to finally believe them... I can choose to forgive myself, or I can hold onto the pride that drives me into self-dis-respecting behaviors.
I also discovered that every person I interacted with helped me on this journey. They offered insight or observation on one aspect or another (or a couple) of my inner conversations, even when I did not initiate discussion of those conversations. There were so many times this summer when someone said exactly what I needed to hear, or exactly what I was thinking, or provided me a new window to thoughts and conversations I had in different places. It became clearer and clearer as the summer passed that I am surrounded by those who gently pushed, and lovingly supported and drastically challenged, and deeply loved... me,... even when I didn't know they were doing it, or invite it.
So how much IS Free Will? And how much IS Predestination?
A conversation amongst my staff (who are *somewhat* - ahem - younger than myself) really showed me...
Vastly Mature Lifeguard 1 (19 years old) is dispensing wisdom to Still Growing Lifeguard 2 (16 years old), while Awesomely Sure-of-Himself Lifeguard 3 (19 years old) is listening. My husband and I are hanging out nearby:
LG1: (in resonse to something LG 2 said) But you always have a choice!
LG2: But I didn't! It is what my family expected me to do.
Me: Hon, there are many things you don't get choices on...
LG1: That's not true. You ALWAYS have a choice!
Husband: (chuckle) Ahhh, to be young....
Me: There are many things I did NOT choose. I never chose autism. I do not choose the challenges it brings us...
LG3: Then they were chosen for you.
LG1: But you always have a choice. You could have chosen not to deal with it. I didn't say they were all good options, but you have a choice.
And therein lies my conundrum... What is "chosen for me" and what do "I choose"? Can I have both at the same time?
I have always been convinced that God puts you where He needs you to be, when He needs you to be there. I am a great "connector", seeking (and finding) the threads that weave all the stories together, seeking the perspective that moves pointillism into masterpiece... I can "see" clearly how the road I have walked, with every twist and turn, has lead directly to where I am at - and how each experience provided me with a skill or knowledge that is immediately relative to my life functions. All the players and all the settings are relevant, and it so clear, that now that I am seeking the relevance in any new players/ settings... It is painfully, disgustingly, glaringly obvious that I am shaped by my experience to meet a future goal...
Yet, I also can see how I have clung to some pictures of myself that enabled a victim mentality. I have made excuses for not trying, or for trying only so hard, or for trying too hard, or for trying in the wrong directions. I can see where I chose to be unhappy, or wallow in what was most frustrating, or let fear rule my decisions. I know that I have the ability to control my response - as well as my perceptions. And not just know with my head (saber in Spanish), but know with my heart (conocer in Spanish) - I conozco that what I choose to see is what will show up. I have had so many lessons on that! From miscommunications with family and friends, to setting student expectations, to defining sexiness and self-image... I get to CHOOSE what I see and how I see it.
So how much of my reality is made BY me, and how much is made FOR me?
And why is this question driving me nuts!? I have to deal with it either way - so does it make a difference? Do I get to control my life? Does faith matter if I get to make all the choices?
Or is it about balance - like everything else... I do not get to lay the road, but I get to choose how I climb the fences?
Friday, July 26, 2013
Renewing my Vows
ok - so there is a cute side to this story: We knew it was our 15th anniversary this year, so In January as we looked at the Annual Calendar (yes, I plan that far ahead), we started looking through our wedding pictures. My young (6 yo) daughter says:
Where am I?
Well, honey, you weren't born yet. You aren't in these pictures.
But I am part of this family!!! I should be in these pictures!!
So, we talked about it, and decided that renewing our vows would not only be an economical way to celebrate 15 years, it would also be let her be in our wedding pictures.
We set a date near our actual anniversary, and we decided to keep it low key, we worked that day, we put it in a Facebook event without actual invitations, talked to some people about it, and just went about our year. We decided that THIS time, we would write our own vows (no officiant = less cost) - I kinda challenged him to do that the first time, but he declined, so I was proud to see him agree to that.
Life went on. I thought long and hard about what I wanted and needed to say to him. I spent most of the year really happy & content with where we are as a couple, as friends - a place I really have not been before very often. I wrote soliloquies in my head, Great Odes to love and to my husband and to our history... and knew they were just too much to say. The week of the ceremony, I FINALLY started writing all these ideas down, to condense them into something that was hearable...
Here's some of the things I came up with:
1) A mother puts up with the man because she loves the boy. A wife puts up with the boyishness because she loves the man. This has been poignant this year as my mother-in-law ails. She now calls our son by my husband's name. And I have watched my son grow a lot this year. He has ASTOUNDED us with his understanding of people and human dynamics. He is approaching puberty and I need to prepare myself... I compared the way in which I love my son to the way I look at my husband, and tried to see how my mother-in-law sees my husband... and I came up with this Truth. I did NOT mention it in my vows BTW.
2) My son said to me out of the blue on a car ride this spring, "Don't worry Mom, your secret is safe with me." Oh Crap, I think. What the heck have I done that is so bad?! "Um, what secret is that, honey?" "That you and Daddy fight." That's it?! Thank goodness...
"Sweetheart - it is no secret that your daddy & I fight. ALL people disagree and misunderstand each other. The point is not that we should never fight, it's that we say we are sorry, that we forgive each other, and we try to fix when we hurt each other." It became important to me to acknowledge that we HAVE struggled to keep this relationship, to build it through time - it HAS been a LONG hard road, with a good share of doubters. I wanted to be sure that whatever I said in my vows acknowledged that LOVE is a VERB, and we have to actively choose it. What I wanted to say was:
"There were times I couldn't help but love you, and there were times that I wanted to love you, and there were times I wished I loved you, and there were times I decided to love you... but through any of it - I always LOVED you. I am looking forward to seeing how I will love you in the future." But then I thought about how the ending could be taken to be sexually suggestive, so I decided it might be a little too irreverent to say all that...
4) I started retelling all our stories, our history, to coworkers & family, to myself. The time we met, the prolonged unromantic story of our engagement, the years it took me to forgive him for thoughtless words spoken when he first met my family, the time I told him he HAD to go on a vacation away from me, the times I felt judged by him, the time he walked across DC on 9/11 to find me, the winter before the kids that was dark and suicidal for me, my journey to redefining intuition and God, the times he pushed me, the times he carried me, the times I pushed back, the times I asked too much, the times we forgave each other for being too young... I realized:
I said other stuff too. I don't actually remember the exact words, but it made him tear up (the only time I have seen him do so) - so I am grateful that the Holy Spirit gave me the words he needed to hear!
Here's what I didn't tell him (well not until 2 weeks later - 'cuz I can't keep secrets to SAVE MY LIFE)
The inside of our rings are engraved with the words we used to sign our letters to each other during our 3 years of distance relationship. He always signed his letters, "Love Always" - so that is what my ring says. I always signed his letters, "Yours Alone" - so that is what his says. As I thought about what to say, I thought about those rings, those words - and I couldn't bring myself to repeat them in the ceremony, because I haven't lived up to them.
Not because I have EVER given my body to another! The truth is that he is and has always been the only man who's touch has not disgusted or frightened me. I am a touchy-feely person, but the sexual touch is totally different! I hug, but I cannot bring myself to kiss another person.
Did I share my heart? Yes, and no. Not that I gave my heart to another man, but that I continue to ALWAYS give my heart to my students, my coworkers, my friends, my family. It has been a point of argument for us MANY times, because he feels my loyalty to others trumps my loyalty to him. We both work TOO HARD, and spend way to much time on work. As kids came, and there were even more pulls on my time (and his), and this became clearer, and easier to handle because we both saw that we NEEDED to share that loyalty and love.
There was a time in the not distant past that I said to him, "I am a mother first, an instrument of God's will second, and your wife when and if I have time." I finally reached a point that I felt his demands on me compromised my ability to teach, to make a difference in the world around me. I decided that I had heard the Call, that I was being directed to move down a particular work path, that the Kids needed to see "mom's work" as a sibling and be prepared to share me with my commitments to others. Not only would I be doing what I was Divinely Made To Do, but they would learn a good work ethic.
At first I felt I had violated my promises, but then thought about that "it takes lots of man" thing - I am a VERY VERY intense person. He does not deserve to be saddled with all that intensity all the time. Even I have trouble living with my intensity all the time! And I did tell him all this just last night, because he deserves to know that I am True to him while I am True to me too. I will continue to love him and honor our life together - as it was meant to be. We teach each other. And I will continue to love others too. 'Cuz that is what God made me to do. I have to.
Where am I?
Well, honey, you weren't born yet. You aren't in these pictures.
But I am part of this family!!! I should be in these pictures!!
So, we talked about it, and decided that renewing our vows would not only be an economical way to celebrate 15 years, it would also be let her be in our wedding pictures.
We set a date near our actual anniversary, and we decided to keep it low key, we worked that day, we put it in a Facebook event without actual invitations, talked to some people about it, and just went about our year. We decided that THIS time, we would write our own vows (no officiant = less cost) - I kinda challenged him to do that the first time, but he declined, so I was proud to see him agree to that.
Life went on. I thought long and hard about what I wanted and needed to say to him. I spent most of the year really happy & content with where we are as a couple, as friends - a place I really have not been before very often. I wrote soliloquies in my head, Great Odes to love and to my husband and to our history... and knew they were just too much to say. The week of the ceremony, I FINALLY started writing all these ideas down, to condense them into something that was hearable...
Here's some of the things I came up with:
1) A mother puts up with the man because she loves the boy. A wife puts up with the boyishness because she loves the man. This has been poignant this year as my mother-in-law ails. She now calls our son by my husband's name. And I have watched my son grow a lot this year. He has ASTOUNDED us with his understanding of people and human dynamics. He is approaching puberty and I need to prepare myself... I compared the way in which I love my son to the way I look at my husband, and tried to see how my mother-in-law sees my husband... and I came up with this Truth. I did NOT mention it in my vows BTW.
2) My son said to me out of the blue on a car ride this spring, "Don't worry Mom, your secret is safe with me." Oh Crap, I think. What the heck have I done that is so bad?! "Um, what secret is that, honey?" "That you and Daddy fight." That's it?! Thank goodness...
"Sweetheart - it is no secret that your daddy & I fight. ALL people disagree and misunderstand each other. The point is not that we should never fight, it's that we say we are sorry, that we forgive each other, and we try to fix when we hurt each other." It became important to me to acknowledge that we HAVE struggled to keep this relationship, to build it through time - it HAS been a LONG hard road, with a good share of doubters. I wanted to be sure that whatever I said in my vows acknowledged that LOVE is a VERB, and we have to actively choose it. What I wanted to say was:
"There were times I couldn't help but love you, and there were times that I wanted to love you, and there were times I wished I loved you, and there were times I decided to love you... but through any of it - I always LOVED you. I am looking forward to seeing how I will love you in the future." But then I thought about how the ending could be taken to be sexually suggestive, so I decided it might be a little too irreverent to say all that...
4) I started retelling all our stories, our history, to coworkers & family, to myself. The time we met, the prolonged unromantic story of our engagement, the years it took me to forgive him for thoughtless words spoken when he first met my family, the time I told him he HAD to go on a vacation away from me, the times I felt judged by him, the time he walked across DC on 9/11 to find me, the winter before the kids that was dark and suicidal for me, my journey to redefining intuition and God, the times he pushed me, the times he carried me, the times I pushed back, the times I asked too much, the times we forgave each other for being too young... I realized:
It takes a lot of woman to love a man like him. And it takes a LOT of man to love a woman like me.
So that is what I told him.I said other stuff too. I don't actually remember the exact words, but it made him tear up (the only time I have seen him do so) - so I am grateful that the Holy Spirit gave me the words he needed to hear!
Here's what I didn't tell him (well not until 2 weeks later - 'cuz I can't keep secrets to SAVE MY LIFE)
The inside of our rings are engraved with the words we used to sign our letters to each other during our 3 years of distance relationship. He always signed his letters, "Love Always" - so that is what my ring says. I always signed his letters, "Yours Alone" - so that is what his says. As I thought about what to say, I thought about those rings, those words - and I couldn't bring myself to repeat them in the ceremony, because I haven't lived up to them.
Not because I have EVER given my body to another! The truth is that he is and has always been the only man who's touch has not disgusted or frightened me. I am a touchy-feely person, but the sexual touch is totally different! I hug, but I cannot bring myself to kiss another person.
Did I share my heart? Yes, and no. Not that I gave my heart to another man, but that I continue to ALWAYS give my heart to my students, my coworkers, my friends, my family. It has been a point of argument for us MANY times, because he feels my loyalty to others trumps my loyalty to him. We both work TOO HARD, and spend way to much time on work. As kids came, and there were even more pulls on my time (and his), and this became clearer, and easier to handle because we both saw that we NEEDED to share that loyalty and love.
There was a time in the not distant past that I said to him, "I am a mother first, an instrument of God's will second, and your wife when and if I have time." I finally reached a point that I felt his demands on me compromised my ability to teach, to make a difference in the world around me. I decided that I had heard the Call, that I was being directed to move down a particular work path, that the Kids needed to see "mom's work" as a sibling and be prepared to share me with my commitments to others. Not only would I be doing what I was Divinely Made To Do, but they would learn a good work ethic.
This issue with saying "yours alone" was not that I had given me to someone besides him - it is that I realized I had RECLAIMED part of myself FOR ME! And I was not gonna be giving that back! I am NOT "his alone", because I am mine too.
At first I felt I had violated my promises, but then thought about that "it takes lots of man" thing - I am a VERY VERY intense person. He does not deserve to be saddled with all that intensity all the time. Even I have trouble living with my intensity all the time! And I did tell him all this just last night, because he deserves to know that I am True to him while I am True to me too. I will continue to love him and honor our life together - as it was meant to be. We teach each other. And I will continue to love others too. 'Cuz that is what God made me to do. I have to.
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