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 Asperger's. Show all posts
Showing posts with label Asperger's. 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.
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...
Wednesday, December 25, 2013
On Christmas Movie Marathon Insights...
How to Train Your Dragon, Kung Fu Panda... yeah, we've been watching FX today
And it has led to some important insights....
"We need more of... this"
"You just gestured to all of me..."
Insight: People are a whole package. Yes, we all have attributes, lists of those things that compose us, but we are a complete organism - a whole package.
People, humanity, seems to have a need to take things apart in order to put them back together. We tend to label the components, looking for the exact spot in a system, the exact location of a glitch that we need to tweak or fix. Industrialization seems to have moved us to a place where our most basic thought processes incline to interchangeable parts theory.
DaVinci recorded a minutia of biological information in his studies of the human body. The Portuguese led the way in conquering the seas through the myriad components of navigation. The defeat of the Spanish Armada (ships sunk with ammunition on board because it didn't fit the cannons on board) led to an interchangeable parts mentality in the military, eventually championed by Eli Whitney and used in machinery production, from the cotton gin to the tractor. The very basis of our economic machine is interchangeable parts - each new model of car has only one or two things different from the past one because its design is based on the components, the hardware that has already been produced - the molds and dies that have been cutting out fenders and pumping out headlights that have been stocked and stored in warehouses, waiting to be assembled... (think Johnny Cash, "One Piece At A Time")
But the sum is greater than the parts! Identifying the parts does NOT define how they work together. Interestingly, the most contemporary medical research is showing just how little we "get" that... one of the most compelling "theories" that is shaping the way doctors practice is based on Microbiology - the idea that there are zillions of bacteria all over and in our bodies (that we are in fact only 10% human according to an article in the Smithsonian, July-August 2010). I'm not sure if I read it somewhere or if it's just a "gut" feeling (pun unintentional but well placed) but it is just this kind of complex whole, sum-greater-than-parts, macro understanding that would explain why Autism is related to intestinal function (called the gut-brain connection that is talked about with the Gluten-Free-Casein-Free diet, and the autism-vaccine discussion).
What if we are looking in the wrong directions, trying too hard to find pieces?
"The point is, stop trying to be what you are not."
Insight: What if we stop trying to be what we are NOT? what if we start looking at WHOLES instead of parts? What if instead of making lists of all the thorns and roses, we just accepted that they go together - that they are part of the same plant? What if instead of weeding out my wickedness and trying to make sure people only have to work with my strengths I could learn to accept that they are flip sides of the same coin? To me this is heavily related to the recent Pantene commercial about double standards - and the conversations about how Autism shows up in women. When does assertive become bossy? When does controlling the environment (sensory overload) become manipulation? When does neat-freak become OCD? When does the lack of flexibility & literal thinking translate into being a territorial b!t@#?
"There is no secret ingredient!"
Insight: Things are special because of their innate being. The soup is good because it is the perfect balance of ingredients and methods. It is good just because... it is good. It has been through some refinement, some trial and error, and with practice each batch is consistently good. There are no pieces missing of me either, or of you! I am good just because... I am good. I have been through some learning curves, but the more I am true to my ingredients and methods, the more consistently I am good. Again, it is the sum of all the parts that makes the perfect soup, and me. Finding balance and harmony in all those ingredients & methods makes the best me... and there is no secret ingredient or magic cure or essential act or missing piece needed!! I have all the elements I need already.
I have to say that I really appreciate the messages in these movies. The hero saves himself - no damsels in distress or trying to counter the fates. They are messages of fulfilling destinies - of encountering fates, learning to embrace the True Self. And those Selves are NOT perfect. Hiccup could easily be classified Aspergers (right down to the physical awkwardness), and definitely an outcast. Po is considered the exactly-wrong-guy-for-the-job, adopted and doubted. It is only when they embrace and exploit their differences that they can solve problems - and not just for themselves - but for those lives around them they touch...
I know every generation searches for its identity, tries to find those attributes that give it "a place in History"...
Is there a Big Picture connection here? "Kid's movies" about self-knowledge and being True to Self... a rising number of children being labeled as so "different" they are Autistic... some of those children so different that they can't use words... some healers claiming that they can communicate empathically/ telepathically... some parents & psychics even claiming that we are witnessing the evolution of man...
That sounds pretty far fetched, pretty "out there"!
While the rest of the world was trying to make better candles, an Aspie invented the light bulb... a man who was partially deaf, didn't speak until older, dismissed by schools as a child for his inability to learn... the man who said, "I have not failed, I've just found 10000 ways that do not work"... someone who devoted untold hours to a crazy pursuit, a vision only he could see...
And it has led to some important insights....
"We need more of... this"
"You just gestured to all of me..."
Insight: People are a whole package. Yes, we all have attributes, lists of those things that compose us, but we are a complete organism - a whole package.
People, humanity, seems to have a need to take things apart in order to put them back together. We tend to label the components, looking for the exact spot in a system, the exact location of a glitch that we need to tweak or fix. Industrialization seems to have moved us to a place where our most basic thought processes incline to interchangeable parts theory.
DaVinci recorded a minutia of biological information in his studies of the human body. The Portuguese led the way in conquering the seas through the myriad components of navigation. The defeat of the Spanish Armada (ships sunk with ammunition on board because it didn't fit the cannons on board) led to an interchangeable parts mentality in the military, eventually championed by Eli Whitney and used in machinery production, from the cotton gin to the tractor. The very basis of our economic machine is interchangeable parts - each new model of car has only one or two things different from the past one because its design is based on the components, the hardware that has already been produced - the molds and dies that have been cutting out fenders and pumping out headlights that have been stocked and stored in warehouses, waiting to be assembled... (think Johnny Cash, "One Piece At A Time")
But the sum is greater than the parts! Identifying the parts does NOT define how they work together. Interestingly, the most contemporary medical research is showing just how little we "get" that... one of the most compelling "theories" that is shaping the way doctors practice is based on Microbiology - the idea that there are zillions of bacteria all over and in our bodies (that we are in fact only 10% human according to an article in the Smithsonian, July-August 2010). I'm not sure if I read it somewhere or if it's just a "gut" feeling (pun unintentional but well placed) but it is just this kind of complex whole, sum-greater-than-parts, macro understanding that would explain why Autism is related to intestinal function (called the gut-brain connection that is talked about with the Gluten-Free-Casein-Free diet, and the autism-vaccine discussion).
What if we are looking in the wrong directions, trying too hard to find pieces?
"The point is, stop trying to be what you are not."
Insight: What if we stop trying to be what we are NOT? what if we start looking at WHOLES instead of parts? What if instead of making lists of all the thorns and roses, we just accepted that they go together - that they are part of the same plant? What if instead of weeding out my wickedness and trying to make sure people only have to work with my strengths I could learn to accept that they are flip sides of the same coin? To me this is heavily related to the recent Pantene commercial about double standards - and the conversations about how Autism shows up in women. When does assertive become bossy? When does controlling the environment (sensory overload) become manipulation? When does neat-freak become OCD? When does the lack of flexibility & literal thinking translate into being a territorial b!t@#?
"There is no secret ingredient!"
Insight: Things are special because of their innate being. The soup is good because it is the perfect balance of ingredients and methods. It is good just because... it is good. It has been through some refinement, some trial and error, and with practice each batch is consistently good. There are no pieces missing of me either, or of you! I am good just because... I am good. I have been through some learning curves, but the more I am true to my ingredients and methods, the more consistently I am good. Again, it is the sum of all the parts that makes the perfect soup, and me. Finding balance and harmony in all those ingredients & methods makes the best me... and there is no secret ingredient or magic cure or essential act or missing piece needed!! I have all the elements I need already.
I have to say that I really appreciate the messages in these movies. The hero saves himself - no damsels in distress or trying to counter the fates. They are messages of fulfilling destinies - of encountering fates, learning to embrace the True Self. And those Selves are NOT perfect. Hiccup could easily be classified Aspergers (right down to the physical awkwardness), and definitely an outcast. Po is considered the exactly-wrong-guy-for-the-job, adopted and doubted. It is only when they embrace and exploit their differences that they can solve problems - and not just for themselves - but for those lives around them they touch...
I know every generation searches for its identity, tries to find those attributes that give it "a place in History"...
Is there a Big Picture connection here? "Kid's movies" about self-knowledge and being True to Self... a rising number of children being labeled as so "different" they are Autistic... some of those children so different that they can't use words... some healers claiming that they can communicate empathically/ telepathically... some parents & psychics even claiming that we are witnessing the evolution of man...
That sounds pretty far fetched, pretty "out there"!
While the rest of the world was trying to make better candles, an Aspie invented the light bulb... a man who was partially deaf, didn't speak until older, dismissed by schools as a child for his inability to learn... the man who said, "I have not failed, I've just found 10000 ways that do not work"... someone who devoted untold hours to a crazy pursuit, a vision only he could see...
Wednesday, December 11, 2013
the Bigger Autism Picture
I'm gonna cover a LOT of ground here, so stick with me people...
Autism Speaks has lost its credibility with the Autistic Community. Those adults on the Spectrum who have found their voices are adamant that Autism Speaks does NOT speak for them. The heart of the argument is around a single ad - a message from the director of Autism Speaks that focuses on how bad it is to live with Autism.
This outlook, of Autism as "bad", is the core of the "seeking a cure" mission of Autism Speaks - a mission that all Autistic adults active in public discourse find repulsive, insulting and threatening. (Note that this cannot inherently include those "low-functioning" adults who are not active in public discourse.) The argument from Autistic adults is that Autism is NOT separable from their identity.
Here are my insights:
EVERYONE, on all and any sides of any discussion about Autism advocate that the MOST IMPORTANT thing an autistic person needs is EARLY INTERVENTION.
Certainly, the medical community identifies Autism as a tragic condition, and it is a fight to get a diagnosis because doctors are so loathe to weight a child with the finality and terminality it carries in the medical field. By medical criteria, we are dealing with an incurable condition. Historically that diagnosis has meant institutionalization because the "victim" is a total dependent.
So once you finally get the diagnosis, there is HUGE amounts of pressure to make up for all the time you've already lost getting that diagnosis so that you can intervene as early as possible.
Now the debate becomes not IF the patient is sick, but WHICH therapies will be effective with the patient. A long process of trial and error begins. Everybody chimes in with their expertise. The Neuro will advocate from their perspective, the OT will advocate from their perspective, the Speech Pathologist will advocate from their perspective, the Psychologist will advocate from their perspective, the Teachers will speak from their experience, the Old Ladies will suggest from their... accumulated wisdom. If you are very lucky, someone will finally send you the the Developmental Pediatrician who will try to tie all of these perspectives together. And not all these people will agree with each other. You will receive LOTS of conflicting information.
And the parent is trapped in a vortex of insanity.
Ultimately, it is the parent who will be the trigger on all this. All these experts will make their suggestions based on the accumulated observations of the parents. And the effectiveness of any strategies is entirely contingent upon the parents' willingness and ability to follow thru with the act. The effectiveness of a therapy will be determined by the parents' observations. Solicited and unsolicited advice will bombard. Comparisons will be sought in an effort to define through the confusion. And there will be LOTS of people who provide you all kinds of resources to help you. The medical establishment knows it has set up this vortex of confusion, so it will tell you to find a parent group. The educational establishment will try to make you "part of the team" in the IEP process, to greater or lesser success depending on your locality.
Everybody KNOWS you are overwhelmed, so the next thing you'll be pressured to do is "get services", apply for "the waiver". You'll be connected to an advocate group that will "walk you through" that process. The idea here is that your kiddo is DISabled, so they ARE entitled to what ever they need to be successful. Everything from in home therapy, to the hardware of the therapists, to respite caregivers in your home. Everyone will tell you, you NEED this!! And they are here to help you get it.
The very FIRST thing that any advocate group will tell you is to be prepared to fight. As you start looking at others' stories, trying to come to grips with which of the various outcomes and realities might possibly apply to your situation, you will see LOTS of verbiage about warriors and difficulties and legal rights. The first thing you find out is that you are gonna be fighting up hill "the rest of your life". The doctors want to "fix", so you will search and search for the "fix" that works. The teachers want to "improve", so you keep trying to meet that measurement.
And the very SECOND thing that advocate will tell you: only list the deficits. You are trying to convince the government that your child is DISabled, UNabled. Sure, you may have seen growth in your child in the past 3 months, but be sure you tell the social worker about how far behind your kid is on "milestones". As fellow parents, we celebrate that your kid only ate grass 3 times this week instead of seven, or that the obsession topic is slowly broadening, but you need to make sure that the social worker knows that 95% of the words that come out of your child's mouth are lines from movies - don't mention that they were relevant to the discussion they were used in.
And then comes the big quiet admission. Filing for "the waiver" or "disability" really is an admission that your child needs institutionalization, and you are asking to meet that need in the home. Some advocates will be vehement that they are NOT allowed to ask you that, but most parents will admit that they were asked exactly that, and those that said no were denied...
The other route to those services is through the educational system. Ideally (and in some places) those 2 systems work together, with the school using the resources of social security to pay for the aides and equipment your child uses in the school and at home. But they are NOT the same systems. Docs who who work in the school system are no longer practicing docs, they are references for the school - they can label, but they cannot diagnose. But the school will tell you they their experts are better - "they know children better" - because they have to be sure their expert is an expert.
The school is required to keep you informed, to let you be "a part of the team" through the IEP process, but it is a process, by committee, and it means that your voice is inherently outnumbered by the educational experts on the committee, and decision making is slow. So they will press you to rush to action since committees are inherently slow. If you are incredibly lucky, your IEP team will work together well, and your wishes will match theirs, and things will be awesome - you won't need that medical stuff anyway (until they are 18 years old).
But luck does not run high in this pursuit. The vast majority of parents find that at some point they are bullied into signing the IEP so that the desperate teachers can do *something*, *anything* to help your child, because what is going on is unmanageable, and they can't make changes without a committee meeting. The experts on the IEP team are threatened by each other (politics playing out in their system), so an informed parent is a threat too. They cannot afford to lose face in front of each other by letting you "run" the meeting. Worse you may have been so thorough in your research that you threaten their "expertise", and now they fight to retain a shred of their professionalism. If you are REALLY unlucky, you'll be dealing with a systemic culture where this need to prove expertise underlies every meeting and the IEP players will come into the process on the defensive - and make you feel like your small limited knowledge of just one case is inconsequential.
SO you do "whatever it takes!" - because you are the parent, the grown-up, the warrior, the protector. Those early interventions are the BEST CHANCE you have of giving your child the slimmest possibility that they will be able to function just well enough to avoid that institutionalized "group home" in 18 - 16 years...
Under these circumstances, you can see why it is difficult to "celebrate" the successes, to see the "gifts" of Autism. It is clear that Autism IS in fact a burden - and it gets carried around everywhere, because there are therapists, and respite caregivers, and caring teachers, and designated aides, and judging neighbors EVERYWHERE. It is desperately obvious in your child's gait, flapping hands, vocal stimming, sensory sensitive clothes, fidget toys... this kid is ... "special".
So you buy into your own hype. You tell the social worker the worst. You celebrate with the therapists, but not too much or their job will be "done". You cry when the rude people in line at the store make comments. You research like mad, and then gird yourself for IEP meetings. You read as many blogs as possible to try to work with the school staff more effectively. You observe very closely, trying to figure out EXACTLY what environmental sensory experience triggered the overload. You manage the daily environment and routine to create "functionality" for your child. That's your JOB.
You dwell in that place of bleak hope, and wear yourself out meeting all those expectations.
You work so VERY VERY hard to connect with your child, to come into their world, to "figure it out"...
And then you find that community of Autistic adults who are saying that all these therapies are a punishment. You find a group of parent bloggers who are saying that Autism is a window into the future, a new humanity. You finally look at the remnants of your couch one day and think, "REALLY?!?!?!?!?!? THIS is the BEST it can be?!"
And then you look at your kid, pacing the floor thru the 780th consecutive daily showing of the same episode of Thomas, and you see with your heart. You realize that you have a choice.
Either I can look at where we are and look backwards, or I can look at where we are and look forwards...
And THEN you realize that the secret is... you have to start by looking at where you are...
Once you start listening to your heart instead of your fears, you know that you CAN connect with your kid - you HAVE BEEN connecting with them. You have had instincts driving you this whole time to do exactly what needed to be done - and you were overridden by the "experts" and your guilt.
The first time you realize that Disney movie lines out of context really DO effectively communicate what he'd like for dinner, or that the arrangement of the shoes actually looks like continents, or that she brought you her favorite security object because you were sick... THEN you start to TRUST those instincts.
And it builds over time. You allow yourself to watch more closely, to fall into their rhythms... you start to actually meet in the middle, not just wait for your child to come on over...
Then you can actually start to understand the adult Autistics, and the blogging parents who blow sunshine up everybody's butts. You DO have a choice about whether is a DISability or a DIFFERENTability. You start to see how a "cure" would deprive your kid of the creativity they found in mashing up Dora with National Geographic. You start to see the secret genius of obsession with minutia. You start deciding that there are roses, not just thorns...
And it DOES become a larger spiritual question. Am I going to seek the Good over the Bad? Am I going to value the intention over the delivery? Am I going to listen or demand?
Will I have faith that everything happens for a reason? Or will I accept success only on MY terms?
Once you see the awesomeness that had been hiding behind the tragedy, once you focus on the loving child inside all that struggle, change starts to happen. Maybe your perspective changes, so you can accept different as equal. Maybe the kid actually develops better because they know they are loved. Probably both happen. The sum becomes greater than the parts, and fabulousness happens...
It isn't a "miracle cure". The world is not "suddenly changed", except that it is... Everything is not "just put back to rights", except that it is... The hardships continue, except that they get easier...
And now comes the part where I have to "prove" to you that my kid is autistic "enough" for my insights to be valid... where you who are walking through the depths of these Early Interventions can find that shred of similarity that lets you believe that my experience can be reflective of yours... where those Autistic adults can measure whether or not my kid "qualifies" to be a part of their community... where I can commiserate with others who have been to the ER for poison mushrooms, or spent un-spare pennies on sensory tools, or have learned what it is to be insulted in "dinosaur"... where we can all admit how tired we are, of ALL of it...
But I am not going to, because THIS day I am making a choice. I am walking through a door. My child's story is HIS own. He will tell it in his best fashion. I am his mother, his teacher, his coach, his friend... I will play my part in his story...
But I have my OWN story - the one I am living. It includes my kids, my family, and the Work God Has Created Me For...
You will read this and know it is True for you too, or you will read this and know you are not here... and the words will find you again when you get here.
Rest assured, that Autism is a gift, a unique path, a piece of the Master Puzzle - and it WILL all fit together correctly, eventually.
...and you need to get really good at eaves dropping and observing, buddy...
Autism Speaks has lost its credibility with the Autistic Community. Those adults on the Spectrum who have found their voices are adamant that Autism Speaks does NOT speak for them. The heart of the argument is around a single ad - a message from the director of Autism Speaks that focuses on how bad it is to live with Autism.
This outlook, of Autism as "bad", is the core of the "seeking a cure" mission of Autism Speaks - a mission that all Autistic adults active in public discourse find repulsive, insulting and threatening. (Note that this cannot inherently include those "low-functioning" adults who are not active in public discourse.) The argument from Autistic adults is that Autism is NOT separable from their identity.
Here are my insights:
EVERYONE, on all and any sides of any discussion about Autism advocate that the MOST IMPORTANT thing an autistic person needs is EARLY INTERVENTION.
Certainly, the medical community identifies Autism as a tragic condition, and it is a fight to get a diagnosis because doctors are so loathe to weight a child with the finality and terminality it carries in the medical field. By medical criteria, we are dealing with an incurable condition. Historically that diagnosis has meant institutionalization because the "victim" is a total dependent.
So once you finally get the diagnosis, there is HUGE amounts of pressure to make up for all the time you've already lost getting that diagnosis so that you can intervene as early as possible.
Now the debate becomes not IF the patient is sick, but WHICH therapies will be effective with the patient. A long process of trial and error begins. Everybody chimes in with their expertise. The Neuro will advocate from their perspective, the OT will advocate from their perspective, the Speech Pathologist will advocate from their perspective, the Psychologist will advocate from their perspective, the Teachers will speak from their experience, the Old Ladies will suggest from their... accumulated wisdom. If you are very lucky, someone will finally send you the the Developmental Pediatrician who will try to tie all of these perspectives together. And not all these people will agree with each other. You will receive LOTS of conflicting information.
And the parent is trapped in a vortex of insanity.
Ultimately, it is the parent who will be the trigger on all this. All these experts will make their suggestions based on the accumulated observations of the parents. And the effectiveness of any strategies is entirely contingent upon the parents' willingness and ability to follow thru with the act. The effectiveness of a therapy will be determined by the parents' observations. Solicited and unsolicited advice will bombard. Comparisons will be sought in an effort to define through the confusion. And there will be LOTS of people who provide you all kinds of resources to help you. The medical establishment knows it has set up this vortex of confusion, so it will tell you to find a parent group. The educational establishment will try to make you "part of the team" in the IEP process, to greater or lesser success depending on your locality.
Everybody KNOWS you are overwhelmed, so the next thing you'll be pressured to do is "get services", apply for "the waiver". You'll be connected to an advocate group that will "walk you through" that process. The idea here is that your kiddo is DISabled, so they ARE entitled to what ever they need to be successful. Everything from in home therapy, to the hardware of the therapists, to respite caregivers in your home. Everyone will tell you, you NEED this!! And they are here to help you get it.
The very FIRST thing that any advocate group will tell you is to be prepared to fight. As you start looking at others' stories, trying to come to grips with which of the various outcomes and realities might possibly apply to your situation, you will see LOTS of verbiage about warriors and difficulties and legal rights. The first thing you find out is that you are gonna be fighting up hill "the rest of your life". The doctors want to "fix", so you will search and search for the "fix" that works. The teachers want to "improve", so you keep trying to meet that measurement.
And the very SECOND thing that advocate will tell you: only list the deficits. You are trying to convince the government that your child is DISabled, UNabled. Sure, you may have seen growth in your child in the past 3 months, but be sure you tell the social worker about how far behind your kid is on "milestones". As fellow parents, we celebrate that your kid only ate grass 3 times this week instead of seven, or that the obsession topic is slowly broadening, but you need to make sure that the social worker knows that 95% of the words that come out of your child's mouth are lines from movies - don't mention that they were relevant to the discussion they were used in.
And then comes the big quiet admission. Filing for "the waiver" or "disability" really is an admission that your child needs institutionalization, and you are asking to meet that need in the home. Some advocates will be vehement that they are NOT allowed to ask you that, but most parents will admit that they were asked exactly that, and those that said no were denied...
The other route to those services is through the educational system. Ideally (and in some places) those 2 systems work together, with the school using the resources of social security to pay for the aides and equipment your child uses in the school and at home. But they are NOT the same systems. Docs who who work in the school system are no longer practicing docs, they are references for the school - they can label, but they cannot diagnose. But the school will tell you they their experts are better - "they know children better" - because they have to be sure their expert is an expert.
The school is required to keep you informed, to let you be "a part of the team" through the IEP process, but it is a process, by committee, and it means that your voice is inherently outnumbered by the educational experts on the committee, and decision making is slow. So they will press you to rush to action since committees are inherently slow. If you are incredibly lucky, your IEP team will work together well, and your wishes will match theirs, and things will be awesome - you won't need that medical stuff anyway (until they are 18 years old).
But luck does not run high in this pursuit. The vast majority of parents find that at some point they are bullied into signing the IEP so that the desperate teachers can do *something*, *anything* to help your child, because what is going on is unmanageable, and they can't make changes without a committee meeting. The experts on the IEP team are threatened by each other (politics playing out in their system), so an informed parent is a threat too. They cannot afford to lose face in front of each other by letting you "run" the meeting. Worse you may have been so thorough in your research that you threaten their "expertise", and now they fight to retain a shred of their professionalism. If you are REALLY unlucky, you'll be dealing with a systemic culture where this need to prove expertise underlies every meeting and the IEP players will come into the process on the defensive - and make you feel like your small limited knowledge of just one case is inconsequential.
SO you do "whatever it takes!" - because you are the parent, the grown-up, the warrior, the protector. Those early interventions are the BEST CHANCE you have of giving your child the slimmest possibility that they will be able to function just well enough to avoid that institutionalized "group home" in 18 - 16 years...
Under these circumstances, you can see why it is difficult to "celebrate" the successes, to see the "gifts" of Autism. It is clear that Autism IS in fact a burden - and it gets carried around everywhere, because there are therapists, and respite caregivers, and caring teachers, and designated aides, and judging neighbors EVERYWHERE. It is desperately obvious in your child's gait, flapping hands, vocal stimming, sensory sensitive clothes, fidget toys... this kid is ... "special".
So you buy into your own hype. You tell the social worker the worst. You celebrate with the therapists, but not too much or their job will be "done". You cry when the rude people in line at the store make comments. You research like mad, and then gird yourself for IEP meetings. You read as many blogs as possible to try to work with the school staff more effectively. You observe very closely, trying to figure out EXACTLY what environmental sensory experience triggered the overload. You manage the daily environment and routine to create "functionality" for your child. That's your JOB.
You dwell in that place of bleak hope, and wear yourself out meeting all those expectations.
You work so VERY VERY hard to connect with your child, to come into their world, to "figure it out"...
And then you find that community of Autistic adults who are saying that all these therapies are a punishment. You find a group of parent bloggers who are saying that Autism is a window into the future, a new humanity. You finally look at the remnants of your couch one day and think, "REALLY?!?!?!?!?!? THIS is the BEST it can be?!"
And then you look at your kid, pacing the floor thru the 780th consecutive daily showing of the same episode of Thomas, and you see with your heart. You realize that you have a choice.
Either I can look at where we are and look backwards, or I can look at where we are and look forwards...
And THEN you realize that the secret is... you have to start by looking at where you are...
Once you start listening to your heart instead of your fears, you know that you CAN connect with your kid - you HAVE BEEN connecting with them. You have had instincts driving you this whole time to do exactly what needed to be done - and you were overridden by the "experts" and your guilt.
The first time you realize that Disney movie lines out of context really DO effectively communicate what he'd like for dinner, or that the arrangement of the shoes actually looks like continents, or that she brought you her favorite security object because you were sick... THEN you start to TRUST those instincts.
And it builds over time. You allow yourself to watch more closely, to fall into their rhythms... you start to actually meet in the middle, not just wait for your child to come on over...
Then you can actually start to understand the adult Autistics, and the blogging parents who blow sunshine up everybody's butts. You DO have a choice about whether is a DISability or a DIFFERENTability. You start to see how a "cure" would deprive your kid of the creativity they found in mashing up Dora with National Geographic. You start to see the secret genius of obsession with minutia. You start deciding that there are roses, not just thorns...
And it DOES become a larger spiritual question. Am I going to seek the Good over the Bad? Am I going to value the intention over the delivery? Am I going to listen or demand?
Will I have faith that everything happens for a reason? Or will I accept success only on MY terms?
Once you see the awesomeness that had been hiding behind the tragedy, once you focus on the loving child inside all that struggle, change starts to happen. Maybe your perspective changes, so you can accept different as equal. Maybe the kid actually develops better because they know they are loved. Probably both happen. The sum becomes greater than the parts, and fabulousness happens...
It isn't a "miracle cure". The world is not "suddenly changed", except that it is... Everything is not "just put back to rights", except that it is... The hardships continue, except that they get easier...
And now comes the part where I have to "prove" to you that my kid is autistic "enough" for my insights to be valid... where you who are walking through the depths of these Early Interventions can find that shred of similarity that lets you believe that my experience can be reflective of yours... where those Autistic adults can measure whether or not my kid "qualifies" to be a part of their community... where I can commiserate with others who have been to the ER for poison mushrooms, or spent un-spare pennies on sensory tools, or have learned what it is to be insulted in "dinosaur"... where we can all admit how tired we are, of ALL of it...
But I am not going to, because THIS day I am making a choice. I am walking through a door. My child's story is HIS own. He will tell it in his best fashion. I am his mother, his teacher, his coach, his friend... I will play my part in his story...
But I have my OWN story - the one I am living. It includes my kids, my family, and the Work God Has Created Me For...
You will read this and know it is True for you too, or you will read this and know you are not here... and the words will find you again when you get here.
Rest assured, that Autism is a gift, a unique path, a piece of the Master Puzzle - and it WILL all fit together correctly, eventually.
...and you need to get really good at eaves dropping and observing, buddy...
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...
Sunday, May 19, 2013
Elopement - Drowning: A CALL TO ACTION!
So, to quote the statistics that I have seen traveling around Facebook today: 48% of kids with autism wander (elope). Either 91% or 92% of those end in drownings. These are not numbers - they are souls...
As I have mentioned in previous posts, I am a swim instructor. I am seeing more and more students with subtle and blatant special needs because I am not secretive about my child's special needs. I understand that my "expertise" is based on my Red Cross Water Safety Instructor training, my parenting insights, and my years of teaching experience. My degree is in American History (just to be clear - I am NOT claiming more training than that). I understand that my experience is inherently limited by the individuals I have had the opportunity to teach and learn from and may not be a numerically significant data sample. I also understand that I work hard to interface with parents and be observant, and I am seeing changed behaviors and hearing parents that see skills improvement in their children after I teach them. I am convinced I am doing something right and something important.
One local Autism support group (local to me) asked if there were any swim lessons specifically for special needs children, to which there is not yet any affirmative response. As a parent of a "special needs" kids, my research has only ever uncovered private lessons (at least around me). The complaints have always been that they are cost prohibitive (as most therapies and supports are since they are either not "educationally necessary", or not covered by insurance because they are "unproven") or that it is difficult to keep a consistent instructor.
I STAND IN A PLACE OF KNOWLEDGE AND FEEL COMPELLED TO ACT! The loss of 3 children in one week is heart wrenching. The reaction of "mainstream" media is accusatory and misleading. Not only does the public need to be educated about the realities of Autism, the "public" needs to be educated about how it plays a supporting role in safety!! AND AUTISM PARENTS NEED TO BE ARMED WITH THE KNOWLEDGE THEY NEED TO TEACH CHILDREN.
1) I am going to go directly to my supervisors tomorrow and discuss how to create/ start a "special needs" swim lesson. I am not convinced it will "make money" this year, but costs can also be measured in lives. I am honored to work at a 4-H center - to be associated with an EDUCATIONAL organization. I am convinced this is the right thing to do, and the right time to do it.
2) Adults AND children need to start having conversations about swimming and sensory experiences, and have access to that knowledge. Swimming can not be seen as a pursuit/ sport of the "middle class". Parents need to feel empowered to teach their child these life saving skills! The Red Cross originally established its water safety programming BECAUSE most drownings are preventable if people are knowledgeable! People need to have access to supervised swimming experiences so that they have the opportunity to learn and practice water safe behaviors. Look here for an earlier blog I wrote on the topic. There are LOTS of ways you, at home, your family, can address that draw to water, and the disorientation it brings.
3) Communities need to start taking responsibility for shared safety! Too often the parents of autistic children feel judged and accused - as if there is a direct correlation between some "epic parenting fail" and the child's "outrageous" behavior. As amazing as it may seem to some people - all human beings come equipped with minds, no matter their age, and don't need your permission to use it. The argument is often batted about that communities must pay taxes for schools because the entire community is responsible for taking care of it's children. That idea does NOT stop at the automatic deduction. I am counting on my community to keep my roads safe, to not set a fire to their yard, to stay home when sick... WE ALL SHARE RESPONSIBILITY FOR SAFETY! It truly "takes a village" - because not only does my child need to learn to respect the authority of other adults - my child DESERVES to have other definitions of adulthood besides me. I am not perfect, cannot be perfect. I sincerely hope that my child never feels compelled to carry my baggage, and I desperately hope that I can show my child enough examples of humanity/ adulthood that he/she actively CHOOSES the person they become. It IS the responsibility of ALL the adults in the Walmart parking lot to watch for running children, to (patiently) remind them that it is unsafe, honor the rules about stopping for pedestrians and using cross walks, and MODEL SAFE BEHAVIORS. It IS the responsibility of ALL adults to be aware of what is going on around them. As a lifeguard, I am supposed to watch people. It does not take long to see which kid on the playground goes with which adult, or to see that one is looking for the other. I am NOT violating a parent's rights if I ask a kid where their "assigned grown-up" is. I am NOT violating a parent's rights by stopping that toddler from dashing out the door. I am NOT violating a parent's rights if I remind a child how to use a piece of equipment safety.
Cuz, you know what? I am gonna need that help too. My kid is a bolter, a runner, and we have lost him before. And I DO need your help reminding him that he needs to stay with his assigned grown-up. I too have had the unjust call of "inadequate parent" thrust before me, and had to find the strength to stop that ignorance from compounding my guilt.
We have specific strategies that we use. They might work for others, or they might not. Cuz one kid with autism is just one kid with autism, and the resulting behaviors vary greatly. I'll list some ways I have tried to help myself and help him help himself, just in case they are helpful, This is as much a selfish effort to show I am trying hard enough as it is a hope to offer suggestion to any who need it. I am sure that families of all 3 children that died this week used similar strategies...
1) outrageous clothes. When they were little, I ALWAYS dressed them in red or florescent orange when we went out. Not only does that make them visible to me from across a room, it makes them memorable to anyone who glances at them. If they get away from me, people will be more apt to remember them, and for that exact reason, "bad guys" will be less likely to target them. When we went to NYC (ages 4 & 6), I literally put rolls and rolls of curly gift ribbon all over their head (hair ribbons) and bodies (backpacks, shoe laces, back of jackets). ridiculous? maybe, memorable? yes. We ALWAYS dress as dragons at the Rennaisance Festival -with LOTS of sparkly fabric. Twice we have lost him in the crowds as he meandered away to look at some interesting thing. The first year I heard a bystander tell a security guard, "yeah! we saw this kid.. the whole family is dressed like him!" The second time, as soon as we spoke to a performer/ staff member - they brought him to us, because we made SURE to show his "cool" costume to every performer we saw all day long. We made our selves an obvious presence. (this is really only useful if your kid will wear clothes - so for us it was only like 60% of the time until recently...)
2) over talking. This is an auditory processing thing, and eventually a self advocacy thing. Talking through EVERY SINGLE PROCESS, ALL THE TIME... I often find I am doing it pretty loudly too, so that other adults are aware of my expectations for his/ her behavior. And usually it makes it pretty clear that I, and my child, need that extra loving support. "I am asking you to keep your hand on the cart in the grocery store. Please look at the carts around you and try to stay on your side. Those people want to reach the shelves too." "You must hold my hand in the parking lot. I am taller than you, so cars can see me better." "The people who own the store may get very concerned that you are not careful with things we aren't buying. You may not touch it without asking" "I see this person is trying to read quietly, so can you please respect their space and play on the other side." "I would like you to stand away from the curb so that you do not fall into the street." It is pretty annoying, but effective... and you get used to it eventually. This ties into verbal count downs for us. I am standing at the end of the toy aisle, "when I get to 10, it will be time to move to the next row..."
3) front loading. Way explaining before doing anything. Being sure to "practice" every activity. Visit the dentist office before the appointment. Making a fast trip to the mall just to read the directory, and then going another time to see a store. Asking for permission to visit a space before an event to find all the bathrooms. Explaining what it should look like if I am being a good audience member. Explaining when it is time to listen (sit quietly) and when it is time to move around. And this ties into visual cues ("you have to stay on the green part of the rug") and schedules/ lists ("after the lights come back on there will be lots of clapping, and then you can get up from your seat") for us.
4)correcting with validation. That is REALLY hard when you are scared, but trying to understand what the kid was thinking, and show where the "disconnect" was in the decision making. We lost him last winter, and had to really work to explain why we would be worried, so could he please be more thoughtful - and ASK before he goes out? Once he heard dad say he was going to the grocery store. He came out of the bathroom and couldn't find daddy, so he left to go to the grocery store. We saw him outside, he came back in - and determined he didn't think to check the basement... I understand that autism means he thinks differently, but unless we all communicate our thoughts processes, respect each other's intelligence, then we all just wallow in fear.
5) observation. I have found that if I give him more room, he is more willing to push himself, so I spend lots of time actually just sitting back and watching him. I also trust the dog to be watching. Our dog has always alerted when the kids wander too far or a strange adult approaches them. I always felt bad, like I was wasting time, but it so pays off to just really watch them, and how they interact with their environment. I think all parents do that, I just think we get in the habit if doing it without consciousness - like a long car drive.
6) prayer. He still gets away from us - especially now that he is old enough to go to boy bathrooms. Ultimately - like every other autism parent - I am often just praying that his honed interest didn't distract him so much he is being unsafe...
But God's purposes, actions, do not always match ours. Loss is horrific. While I personally believe that everything happens for a reason, I also KNOW how hard it is to accept that, to not be angry with God. Especially when that loss is compounded by ridiculous close-minded misleading accusations.
As I have mentioned in previous posts, I am a swim instructor. I am seeing more and more students with subtle and blatant special needs because I am not secretive about my child's special needs. I understand that my "expertise" is based on my Red Cross Water Safety Instructor training, my parenting insights, and my years of teaching experience. My degree is in American History (just to be clear - I am NOT claiming more training than that). I understand that my experience is inherently limited by the individuals I have had the opportunity to teach and learn from and may not be a numerically significant data sample. I also understand that I work hard to interface with parents and be observant, and I am seeing changed behaviors and hearing parents that see skills improvement in their children after I teach them. I am convinced I am doing something right and something important.
One local Autism support group (local to me) asked if there were any swim lessons specifically for special needs children, to which there is not yet any affirmative response. As a parent of a "special needs" kids, my research has only ever uncovered private lessons (at least around me). The complaints have always been that they are cost prohibitive (as most therapies and supports are since they are either not "educationally necessary", or not covered by insurance because they are "unproven") or that it is difficult to keep a consistent instructor.
I STAND IN A PLACE OF KNOWLEDGE AND FEEL COMPELLED TO ACT! The loss of 3 children in one week is heart wrenching. The reaction of "mainstream" media is accusatory and misleading. Not only does the public need to be educated about the realities of Autism, the "public" needs to be educated about how it plays a supporting role in safety!! AND AUTISM PARENTS NEED TO BE ARMED WITH THE KNOWLEDGE THEY NEED TO TEACH CHILDREN.
1) I am going to go directly to my supervisors tomorrow and discuss how to create/ start a "special needs" swim lesson. I am not convinced it will "make money" this year, but costs can also be measured in lives. I am honored to work at a 4-H center - to be associated with an EDUCATIONAL organization. I am convinced this is the right thing to do, and the right time to do it.
2) Adults AND children need to start having conversations about swimming and sensory experiences, and have access to that knowledge. Swimming can not be seen as a pursuit/ sport of the "middle class". Parents need to feel empowered to teach their child these life saving skills! The Red Cross originally established its water safety programming BECAUSE most drownings are preventable if people are knowledgeable! People need to have access to supervised swimming experiences so that they have the opportunity to learn and practice water safe behaviors. Look here for an earlier blog I wrote on the topic. There are LOTS of ways you, at home, your family, can address that draw to water, and the disorientation it brings.
3) Communities need to start taking responsibility for shared safety! Too often the parents of autistic children feel judged and accused - as if there is a direct correlation between some "epic parenting fail" and the child's "outrageous" behavior. As amazing as it may seem to some people - all human beings come equipped with minds, no matter their age, and don't need your permission to use it. The argument is often batted about that communities must pay taxes for schools because the entire community is responsible for taking care of it's children. That idea does NOT stop at the automatic deduction. I am counting on my community to keep my roads safe, to not set a fire to their yard, to stay home when sick... WE ALL SHARE RESPONSIBILITY FOR SAFETY! It truly "takes a village" - because not only does my child need to learn to respect the authority of other adults - my child DESERVES to have other definitions of adulthood besides me. I am not perfect, cannot be perfect. I sincerely hope that my child never feels compelled to carry my baggage, and I desperately hope that I can show my child enough examples of humanity/ adulthood that he/she actively CHOOSES the person they become. It IS the responsibility of ALL the adults in the Walmart parking lot to watch for running children, to (patiently) remind them that it is unsafe, honor the rules about stopping for pedestrians and using cross walks, and MODEL SAFE BEHAVIORS. It IS the responsibility of ALL adults to be aware of what is going on around them. As a lifeguard, I am supposed to watch people. It does not take long to see which kid on the playground goes with which adult, or to see that one is looking for the other. I am NOT violating a parent's rights if I ask a kid where their "assigned grown-up" is. I am NOT violating a parent's rights by stopping that toddler from dashing out the door. I am NOT violating a parent's rights if I remind a child how to use a piece of equipment safety.
Cuz, you know what? I am gonna need that help too. My kid is a bolter, a runner, and we have lost him before. And I DO need your help reminding him that he needs to stay with his assigned grown-up. I too have had the unjust call of "inadequate parent" thrust before me, and had to find the strength to stop that ignorance from compounding my guilt.
We have specific strategies that we use. They might work for others, or they might not. Cuz one kid with autism is just one kid with autism, and the resulting behaviors vary greatly. I'll list some ways I have tried to help myself and help him help himself, just in case they are helpful, This is as much a selfish effort to show I am trying hard enough as it is a hope to offer suggestion to any who need it. I am sure that families of all 3 children that died this week used similar strategies...
1) outrageous clothes. When they were little, I ALWAYS dressed them in red or florescent orange when we went out. Not only does that make them visible to me from across a room, it makes them memorable to anyone who glances at them. If they get away from me, people will be more apt to remember them, and for that exact reason, "bad guys" will be less likely to target them. When we went to NYC (ages 4 & 6), I literally put rolls and rolls of curly gift ribbon all over their head (hair ribbons) and bodies (backpacks, shoe laces, back of jackets). ridiculous? maybe, memorable? yes. We ALWAYS dress as dragons at the Rennaisance Festival -with LOTS of sparkly fabric. Twice we have lost him in the crowds as he meandered away to look at some interesting thing. The first year I heard a bystander tell a security guard, "yeah! we saw this kid.. the whole family is dressed like him!" The second time, as soon as we spoke to a performer/ staff member - they brought him to us, because we made SURE to show his "cool" costume to every performer we saw all day long. We made our selves an obvious presence. (this is really only useful if your kid will wear clothes - so for us it was only like 60% of the time until recently...)
2) over talking. This is an auditory processing thing, and eventually a self advocacy thing. Talking through EVERY SINGLE PROCESS, ALL THE TIME... I often find I am doing it pretty loudly too, so that other adults are aware of my expectations for his/ her behavior. And usually it makes it pretty clear that I, and my child, need that extra loving support. "I am asking you to keep your hand on the cart in the grocery store. Please look at the carts around you and try to stay on your side. Those people want to reach the shelves too." "You must hold my hand in the parking lot. I am taller than you, so cars can see me better." "The people who own the store may get very concerned that you are not careful with things we aren't buying. You may not touch it without asking" "I see this person is trying to read quietly, so can you please respect their space and play on the other side." "I would like you to stand away from the curb so that you do not fall into the street." It is pretty annoying, but effective... and you get used to it eventually. This ties into verbal count downs for us. I am standing at the end of the toy aisle, "when I get to 10, it will be time to move to the next row..."
3) front loading. Way explaining before doing anything. Being sure to "practice" every activity. Visit the dentist office before the appointment. Making a fast trip to the mall just to read the directory, and then going another time to see a store. Asking for permission to visit a space before an event to find all the bathrooms. Explaining what it should look like if I am being a good audience member. Explaining when it is time to listen (sit quietly) and when it is time to move around. And this ties into visual cues ("you have to stay on the green part of the rug") and schedules/ lists ("after the lights come back on there will be lots of clapping, and then you can get up from your seat") for us.
4)correcting with validation. That is REALLY hard when you are scared, but trying to understand what the kid was thinking, and show where the "disconnect" was in the decision making. We lost him last winter, and had to really work to explain why we would be worried, so could he please be more thoughtful - and ASK before he goes out? Once he heard dad say he was going to the grocery store. He came out of the bathroom and couldn't find daddy, so he left to go to the grocery store. We saw him outside, he came back in - and determined he didn't think to check the basement... I understand that autism means he thinks differently, but unless we all communicate our thoughts processes, respect each other's intelligence, then we all just wallow in fear.
5) observation. I have found that if I give him more room, he is more willing to push himself, so I spend lots of time actually just sitting back and watching him. I also trust the dog to be watching. Our dog has always alerted when the kids wander too far or a strange adult approaches them. I always felt bad, like I was wasting time, but it so pays off to just really watch them, and how they interact with their environment. I think all parents do that, I just think we get in the habit if doing it without consciousness - like a long car drive.
6) prayer. He still gets away from us - especially now that he is old enough to go to boy bathrooms. Ultimately - like every other autism parent - I am often just praying that his honed interest didn't distract him so much he is being unsafe...
But God's purposes, actions, do not always match ours. Loss is horrific. While I personally believe that everything happens for a reason, I also KNOW how hard it is to accept that, to not be angry with God. Especially when that loss is compounded by ridiculous close-minded misleading accusations.
Friday, April 12, 2013
Does it make me human? or Aspie?
Today, I was not needed.
My children got to therapy, dinner got cooked, sunshine was enjoyed, and the everyone is clean. I had nothing to do with any of it, because today I worked all day.
And I really was not needed at work either. We trained today. We learned some new games, and reviewed lots of old ones. We helped some newbies get a swarm of info, and I shared some insights that were hopefully valuable, but I was not needed today.
I am, at heart, an academic - a student of how and why people get along. I love challenge course work because I have a microcosm of experiment in every group. But, I am NOT an athlete. There is a significant amount of physical effort and activity in challenge course work. I am capable, but not as capable as the younger people I work with...
Every year, training makes me feel that much older, that much less capable, that much more disabled... I am SO very frustrated that my body does not perform to the level it once did.
I was not needed today. I was allowed to participate, allowed to offer insight and opinion, tasks were created for me to do, but I was certainly not necessary to the learning that was occurring...
And this really shouldn't be a "problem". I mean why should I be needed? I am going to grow older, it cannot be stopped. My pain will eventually stop me, I have always known. We have worked for years to create a capable and competent staff, and my boss is a friend who actively uses each of us to our strengths. I want my children to be independent and my husband to be a capable caregiver (for his own sake of confidence and because my children deserve a capable male role model)... it is really a great development that I was not needed today.
So why do I feel like crying, but don't? Why do I just wish desperately that my kids would just cuddle up with me? Why do I feel like I should just go hide in bed?
'Cuz I just want somebody to want me?
If I'm not needed, will I be wanted?
Outcast, outsider, never-quite-right, just-not-the-same... I am not really sure that I have ever been wanted. My parents want me, love me, but I am a grown-up now and my job is to be independent, to be a contributing member of society right now... I have had to forge a place for myself, create a niche for myself everywhere I have ever been. I do not know that I have ever really truly believed that I am "wanted". Tolerated, yes, even enjoyed by some, but not sought...
So finding places where I am at least needed helps...
but I wasn't needed today.
Funny that this being different, this standing-outside, this just not being completely with-it, is part of what so many autistics talk about. I thought it was just part of being human... isn't that why it is a universal theme in literature?
The parent group this week had a speaker, a local professor who is Autistic, with a son who is Aspergers. He had some interesting statistics, and postulations. By his research, there is at least a 48% chance that if a child is autistic at least one of the parents is too. As their family described their experiences, I heard a mirror of my own, generations of "academics", labeled "gifted", being some where outside the norm, intense bullying with academic success...
I actually labeled my self as Aspergers today with my peers (at work). They were totally accepting and non-pulsed. No surprise.
So am I feeling like an outsider today, less useful today, because no one really needed me today? or because I finally, openly, labeled myself with a "disability" today?
I really just want a hug... I just want to know that my family loves me... that regardless of labels or aging joints or decreasing mobility or increasing pain, I am valued.
Is that what makes me human?
My children got to therapy, dinner got cooked, sunshine was enjoyed, and the everyone is clean. I had nothing to do with any of it, because today I worked all day.
And I really was not needed at work either. We trained today. We learned some new games, and reviewed lots of old ones. We helped some newbies get a swarm of info, and I shared some insights that were hopefully valuable, but I was not needed today.
I am, at heart, an academic - a student of how and why people get along. I love challenge course work because I have a microcosm of experiment in every group. But, I am NOT an athlete. There is a significant amount of physical effort and activity in challenge course work. I am capable, but not as capable as the younger people I work with...
Every year, training makes me feel that much older, that much less capable, that much more disabled... I am SO very frustrated that my body does not perform to the level it once did.
I was not needed today. I was allowed to participate, allowed to offer insight and opinion, tasks were created for me to do, but I was certainly not necessary to the learning that was occurring...
And this really shouldn't be a "problem". I mean why should I be needed? I am going to grow older, it cannot be stopped. My pain will eventually stop me, I have always known. We have worked for years to create a capable and competent staff, and my boss is a friend who actively uses each of us to our strengths. I want my children to be independent and my husband to be a capable caregiver (for his own sake of confidence and because my children deserve a capable male role model)... it is really a great development that I was not needed today.
So why do I feel like crying, but don't? Why do I just wish desperately that my kids would just cuddle up with me? Why do I feel like I should just go hide in bed?
'Cuz I just want somebody to want me?
If I'm not needed, will I be wanted?
Outcast, outsider, never-quite-right, just-not-the-same... I am not really sure that I have ever been wanted. My parents want me, love me, but I am a grown-up now and my job is to be independent, to be a contributing member of society right now... I have had to forge a place for myself, create a niche for myself everywhere I have ever been. I do not know that I have ever really truly believed that I am "wanted". Tolerated, yes, even enjoyed by some, but not sought...
So finding places where I am at least needed helps...
but I wasn't needed today.
Funny that this being different, this standing-outside, this just not being completely with-it, is part of what so many autistics talk about. I thought it was just part of being human... isn't that why it is a universal theme in literature?
The parent group this week had a speaker, a local professor who is Autistic, with a son who is Aspergers. He had some interesting statistics, and postulations. By his research, there is at least a 48% chance that if a child is autistic at least one of the parents is too. As their family described their experiences, I heard a mirror of my own, generations of "academics", labeled "gifted", being some where outside the norm, intense bullying with academic success...
I actually labeled my self as Aspergers today with my peers (at work). They were totally accepting and non-pulsed. No surprise.
So am I feeling like an outsider today, less useful today, because no one really needed me today? or because I finally, openly, labeled myself with a "disability" today?
I really just want a hug... I just want to know that my family loves me... that regardless of labels or aging joints or decreasing mobility or increasing pain, I am valued.
Is that what makes me human?
Sunday, April 7, 2013
Lessons...
Part of the reason I really love what I do is that there is an intense level of interaction. I am receiving insights from those I "teach" as much as I am offering them...
Yesterday I worked with a group of gentlemen who are on a church retreat. They were seeking shared fellowship - and they got it. They were FUN to play with!
But part of my job is asking, inviting, encouraging them to be reflective of their experience. After a blindfolded trust walk I was schooled. They were in pairs, one blindfolded, the other muted...
We traipsed through the woods, down stairs, through shadows. When we stopped, one of them said, "I totally forgot that I was allowed to talk when I was blindfolded." There was a chorus of agreement.
"This is totally personal, but you can see that my hair is blue. It is Autism Awareness Month, and my son is diagnosed with Autism. You have given me an important insight.
We often see a disability, but we forget that very few disabilities are global. God creates everyone with challenges and also with gifts. It is how the body of Christ works together. How the puzzles pieces all make a whole."
The power of these words haunted me through my sleep last night. The Holy Truth therein has humbled me again. I am particularly frustrated with my child's behavior this week. Am I just not being patient enough to see let his gifts manifest?
Also read a story by Stuart Duncan this morning- a blog about his road to diagnosis - through his child. A road I am on too. The more I read, the more it is clear that I am as autistic as my kid, and generations of my family have been...
This month seems to have heightened the screaming match between adult autistics advocating for themselves and parents of autistic children advocating for their children Should I seek a diagnosis so that my voice is ALLOWED to be as loud?
Yesterday I worked with a group of gentlemen who are on a church retreat. They were seeking shared fellowship - and they got it. They were FUN to play with!
But part of my job is asking, inviting, encouraging them to be reflective of their experience. After a blindfolded trust walk I was schooled. They were in pairs, one blindfolded, the other muted...
We traipsed through the woods, down stairs, through shadows. When we stopped, one of them said, "I totally forgot that I was allowed to talk when I was blindfolded." There was a chorus of agreement.
"This is totally personal, but you can see that my hair is blue. It is Autism Awareness Month, and my son is diagnosed with Autism. You have given me an important insight.
We often see a disability, but we forget that very few disabilities are global. God creates everyone with challenges and also with gifts. It is how the body of Christ works together. How the puzzles pieces all make a whole."
The power of these words haunted me through my sleep last night. The Holy Truth therein has humbled me again. I am particularly frustrated with my child's behavior this week. Am I just not being patient enough to see let his gifts manifest?
Also read a story by Stuart Duncan this morning- a blog about his road to diagnosis - through his child. A road I am on too. The more I read, the more it is clear that I am as autistic as my kid, and generations of my family have been...
This month seems to have heightened the screaming match between adult autistics advocating for themselves and parents of autistic children advocating for their children Should I seek a diagnosis so that my voice is ALLOWED to be as loud?
Tuesday, April 2, 2013
Autism Awareness Day
I was 13 years old. It was a youth retreat with my church - my first & last. One of the things I came away with from that trip was that I just wasn't "sinful" enough to really need to go to youth group...
I grew up a member of a Charismatic Episcopal church in Southern California. We used the traditional hymnal and liturgy, with lots more singing and laying on of hands than I've seen in any congregation since.
On this particular retreat, the younger priest/ Father and an adult youth pastor were praying for all of us, standing in a circle around the recipient of the praying, each member in turn, as they desired. When all the Holy Spirit granted visions and sharing was done for each person they collapsed amongst us, overwhelmed with the Presence of God.
I wasn't sure. I mean, I had already taken lots of ribbing from the other kids because I hadn't stolen anything or broken any major rules, and the whole collapsing thing just seemed a bit much - but the priest was telling an older (college age?) girl that she was worthy of God and just needed to be open, so I worked up my gumption and stepped into the circle. I mean, I want to be that loved too.
They all laid hands on me, and then the adults shared the visions the Holy Spirit inspired on my behalf.
"I see a puzzle piece. It is changing shape, trying to fit into it's spot.
Just be yourself, you will fall right into place."
These are the only words I remember from that night
(besides the 7 between me and God - I'm not worthy: Yes you are, dummy)
I have been haunted by that vision of a puzzle piece struggling to fit into it's spot my whole life.
It is part of what drives me to keep trying to figure out "who am I"
It has been the desperate hope that kept me clinging to living during my darkest hours
It is the voice in the back of my head that keeps telling me I have worth
It has been a measuring stick at every point in my life for whether I was being "true" to myself
It became a big joke when my son was diagnosed with autism
I have recently found a few autistic adult pages who have been vocal about NOT liking the puzzle piece as a symbol for their community/ identity/ condition. The complaint seems to be that it engenders fear and confusion - that it automatically implies outcast and challenge - a puzzle to be solved rather than ...
what?
A member to be embraced?
The part that completes the whole?
Like every other piece but still distinctly unique?
Irreplaceable?
I have seen several explanations of why Autism Speaks does NOT "speak" for the autistic community. I'd be inclined to believe it, if only because that is true of every national organization. One does not effectively play politics (for money) and effectively stay genuine to the mission of the organization (the people you represent). They are just NOT the same games. Let me make it VERY clear that I have ABSOLUTELY NO desire to defend or accuse Autism Speaks. I am convinced of my inability to change their national agenda as much as I am convinced I will not change global politics by affiliating myself with scouts, or a church, or a homeschool league, or whatever. I change lives by reaching out to the people around me, by touching the lives of those I serve and worship and work with. I am ALL about the truly American tradition of keeping politics local. If I effectively serve my community, I will be called to serve where I am able.
Many of these same people who dislike Autism Speaks are calling for the "Awareness" to be changed to "Acceptance", or even "Action". Some pages posted memes with all 3 words. MUCH of the FB feed is about justifying participation in Lighting It Up Blue while still advocating expansion of "A" words.
So we are arguing about "A" words...
REALLY?
I have been teaching a training to Teen Couselors - high school aged kids who will be actually sleeping and living with their campers - about diversity: People Are People. We started by playing a social status game with a deck of cards. The game is called Pokerface (From Michelle Cummings/ Training Wheels/ Playing with a Full Deck), and the participants treat each other according to the value of a card. The trickster is the Ace... Is it at the top of the heap? or the bottom?
Being ever clever ;), I used this to segway into Autism... sometimes it is perceived as being the pinnacle of human existence, and sometimes it is perceived as a nadir... gifted or learning disabled? High-functioning or low-functioning? Super sensitive or painfully awkward? Cure or accommodate?
The more I follow other families and individuals, the more I see that all of these are...
TRUE. Certainly not for every one at all times, but for every person on this life journey with Autism, they have found all these true in some way. Some kids really are "better" with treatment of the gut. Adults really do need to self-advocate and live accommodations. A kid can be "severely Aspergers". There is some kind of super power in the differences (whether academic or spiritual or physical) that creates some pretty intense awkwardness.
Amazingly, just like an Ace, Autism exists at both ends of the spectrum of humanity simultaneously, concurrently even.
I find it compellingly odd that there seems to be a growing group/ community of adult autistic who are shrieking for acceptance & action, who keep expressing that they desperately wish to be understood, who appeal to "parents of autistic children" to remember that our babies will grow up too (which is why we need to include them "more"), and who seem to want to disown that parent community (a "we are the only ones who really know" attitude). I am not trying to trivialize the differences - do not misunderstand! Obviously their shrieking comes from lifetimes of being misunderstood and mistreated. There clearly must exist legitimate reasons for their fury. Emotions are never less real because they are experienced by someone else... But it just can't be that autistic adults have more valid voices than parents - any more than it is possible that parents have more valid voices than autistic adults. Calling for "acceptance" and "action" can't turn into "reciprocal domination" - it has to mean reciprocated genuine respect. All of this discussion on both sides is centered on inclusion of everyone, respecting and honoring differences, seeking contribution, not detractions...
Parents who Light It Up Blue are trying to rip the fear associated with Autism to shreds, just like the adult self-advocates are. Parents who Light It Up Blue are celebrating the humanity of their child, not inviting the rest of society to laugh at them!
I want you to think about Chik-fil-A for a moment - not the good food, or the same-sex marriage controversy, or the not being open Sundays... Do you "see" a COW when you think Chik-fil-A?
hmmm... using the symbol of the opposition to make people think of you... (I am not gonna get into the Aspie concern about dairy cattle vs beef cattle here)
What is so wrong with Autism Awareness? Is it so different from Acceptance? Doesn't being aware create a call to Action? Why can't the puzzle piece be in the smack middle of the picture - the piece that brings the whole picture together? Why can't we seek the details we don't understand yet and still value the information we have? Why can't the underlying similarities be just as important as the obvious differences? Or Why can't the underlying differences be as important as the obvious similarities? The puzzle piece is automatically an inherent part of the picture, not just loose in the box...
I am just saying, "Can't we all be friends?"
But I am also saying - let it go - just be who you are - who God made you, with all your glorious differences and similarities - fight YOUR fight, 'cuz everybody else has their own assignment from God - Just be what you ARE, and it will fall into place.
What is more satisfying that nestling puzzle pieces together?
An incomplete puzzle just leaves so much emotional hollowness...
Whether you are starting at the corners or matching the colors of the flowers in the field, it's gotta fit somewhere...
Wait for it... with awareness, and acceptance. Action will smack you in the head when it is ready for you.
Just so you know, here's the exchange that occurred in this house this morning:
Mom: "Would you please wear blue today? It is INTERNATIONAL autism day!"
Kiddo: Wraps self in blue blanket, "Mom, being different is sometimes good because God made us different and we have special talents, but being different is sometimes bad (he starts tearing up) because people leave you out, people get afraid of you"
"All people need to stretch, son. You go to therapy every week to stretch every week, right? You move a little more, or the sound gets a little louder, you grow a little bit. Every body else needs to stretch a little bit more into autism! That's why we are wearing blue - to remind people to stretch so we can all fit together!"
Meeting in the middle means both sides have to move... just sayin'
I grew up a member of a Charismatic Episcopal church in Southern California. We used the traditional hymnal and liturgy, with lots more singing and laying on of hands than I've seen in any congregation since.
On this particular retreat, the younger priest/ Father and an adult youth pastor were praying for all of us, standing in a circle around the recipient of the praying, each member in turn, as they desired. When all the Holy Spirit granted visions and sharing was done for each person they collapsed amongst us, overwhelmed with the Presence of God.
I wasn't sure. I mean, I had already taken lots of ribbing from the other kids because I hadn't stolen anything or broken any major rules, and the whole collapsing thing just seemed a bit much - but the priest was telling an older (college age?) girl that she was worthy of God and just needed to be open, so I worked up my gumption and stepped into the circle. I mean, I want to be that loved too.
They all laid hands on me, and then the adults shared the visions the Holy Spirit inspired on my behalf.
"I see a puzzle piece. It is changing shape, trying to fit into it's spot.
Just be yourself, you will fall right into place."
These are the only words I remember from that night
(besides the 7 between me and God - I'm not worthy: Yes you are, dummy)
I have been haunted by that vision of a puzzle piece struggling to fit into it's spot my whole life.
It is part of what drives me to keep trying to figure out "who am I"
It has been the desperate hope that kept me clinging to living during my darkest hours
It is the voice in the back of my head that keeps telling me I have worth
It has been a measuring stick at every point in my life for whether I was being "true" to myself
It became a big joke when my son was diagnosed with autism
I have recently found a few autistic adult pages who have been vocal about NOT liking the puzzle piece as a symbol for their community/ identity/ condition. The complaint seems to be that it engenders fear and confusion - that it automatically implies outcast and challenge - a puzzle to be solved rather than ...
what?
A member to be embraced?
The part that completes the whole?
Like every other piece but still distinctly unique?
Irreplaceable?
I have seen several explanations of why Autism Speaks does NOT "speak" for the autistic community. I'd be inclined to believe it, if only because that is true of every national organization. One does not effectively play politics (for money) and effectively stay genuine to the mission of the organization (the people you represent). They are just NOT the same games. Let me make it VERY clear that I have ABSOLUTELY NO desire to defend or accuse Autism Speaks. I am convinced of my inability to change their national agenda as much as I am convinced I will not change global politics by affiliating myself with scouts, or a church, or a homeschool league, or whatever. I change lives by reaching out to the people around me, by touching the lives of those I serve and worship and work with. I am ALL about the truly American tradition of keeping politics local. If I effectively serve my community, I will be called to serve where I am able.
Many of these same people who dislike Autism Speaks are calling for the "Awareness" to be changed to "Acceptance", or even "Action". Some pages posted memes with all 3 words. MUCH of the FB feed is about justifying participation in Lighting It Up Blue while still advocating expansion of "A" words.
So we are arguing about "A" words...
REALLY?
I have been teaching a training to Teen Couselors - high school aged kids who will be actually sleeping and living with their campers - about diversity: People Are People. We started by playing a social status game with a deck of cards. The game is called Pokerface (From Michelle Cummings/ Training Wheels/ Playing with a Full Deck), and the participants treat each other according to the value of a card. The trickster is the Ace... Is it at the top of the heap? or the bottom?
Being ever clever ;), I used this to segway into Autism... sometimes it is perceived as being the pinnacle of human existence, and sometimes it is perceived as a nadir... gifted or learning disabled? High-functioning or low-functioning? Super sensitive or painfully awkward? Cure or accommodate?
The more I follow other families and individuals, the more I see that all of these are...
TRUE. Certainly not for every one at all times, but for every person on this life journey with Autism, they have found all these true in some way. Some kids really are "better" with treatment of the gut. Adults really do need to self-advocate and live accommodations. A kid can be "severely Aspergers". There is some kind of super power in the differences (whether academic or spiritual or physical) that creates some pretty intense awkwardness.
Amazingly, just like an Ace, Autism exists at both ends of the spectrum of humanity simultaneously, concurrently even.
I find it compellingly odd that there seems to be a growing group/ community of adult autistic who are shrieking for acceptance & action, who keep expressing that they desperately wish to be understood, who appeal to "parents of autistic children" to remember that our babies will grow up too (which is why we need to include them "more"), and who seem to want to disown that parent community (a "we are the only ones who really know" attitude). I am not trying to trivialize the differences - do not misunderstand! Obviously their shrieking comes from lifetimes of being misunderstood and mistreated. There clearly must exist legitimate reasons for their fury. Emotions are never less real because they are experienced by someone else... But it just can't be that autistic adults have more valid voices than parents - any more than it is possible that parents have more valid voices than autistic adults. Calling for "acceptance" and "action" can't turn into "reciprocal domination" - it has to mean reciprocated genuine respect. All of this discussion on both sides is centered on inclusion of everyone, respecting and honoring differences, seeking contribution, not detractions...
Parents who Light It Up Blue are trying to rip the fear associated with Autism to shreds, just like the adult self-advocates are. Parents who Light It Up Blue are celebrating the humanity of their child, not inviting the rest of society to laugh at them!
I want you to think about Chik-fil-A for a moment - not the good food, or the same-sex marriage controversy, or the not being open Sundays... Do you "see" a COW when you think Chik-fil-A?
hmmm... using the symbol of the opposition to make people think of you... (I am not gonna get into the Aspie concern about dairy cattle vs beef cattle here)
What is so wrong with Autism Awareness? Is it so different from Acceptance? Doesn't being aware create a call to Action? Why can't the puzzle piece be in the smack middle of the picture - the piece that brings the whole picture together? Why can't we seek the details we don't understand yet and still value the information we have? Why can't the underlying similarities be just as important as the obvious differences? Or Why can't the underlying differences be as important as the obvious similarities? The puzzle piece is automatically an inherent part of the picture, not just loose in the box...
I am just saying, "Can't we all be friends?"
But I am also saying - let it go - just be who you are - who God made you, with all your glorious differences and similarities - fight YOUR fight, 'cuz everybody else has their own assignment from God - Just be what you ARE, and it will fall into place.
What is more satisfying that nestling puzzle pieces together?
An incomplete puzzle just leaves so much emotional hollowness...
Whether you are starting at the corners or matching the colors of the flowers in the field, it's gotta fit somewhere...
Wait for it... with awareness, and acceptance. Action will smack you in the head when it is ready for you.
Just so you know, here's the exchange that occurred in this house this morning:
Mom: "Would you please wear blue today? It is INTERNATIONAL autism day!"
Kiddo: Wraps self in blue blanket, "Mom, being different is sometimes good because God made us different and we have special talents, but being different is sometimes bad (he starts tearing up) because people leave you out, people get afraid of you"
"All people need to stretch, son. You go to therapy every week to stretch every week, right? You move a little more, or the sound gets a little louder, you grow a little bit. Every body else needs to stretch a little bit more into autism! That's why we are wearing blue - to remind people to stretch so we can all fit together!"
Meeting in the middle means both sides have to move... just sayin'
Sunday, March 17, 2013
St Patty's Day...
On this day of O'Ness... we have celebrated Irish culture with a discussion about the Holy Trinity symbolized by the Shamrock, whether or not leprechauns will tickle to the death, Guinness Stew & Colcannon...
And some BIG insights of the "Gift of Gab".
We awoke to pinching and tickling as we decided who had green "on" (my kiddo wasn't letting me get away with green nail polish, but he was naked, so he was on the defense...) Then we settled into Irish traditions like the shamrock (being the Holy Trinity) and the kissing of the Blarney Stone. After pretending to be a leprechaun for a little bit, we moved on the to Gift of Gab!
We talked about how we (the family) have the Gift in different ways. For some the Gift of Gab has to do with Woo (from the Strengths Psychology - the idea that everyone is a friend like a politician or salesman has) while for other the Gift of Gab is about story telling and dramatic narrative, but it can also be just having lots of detail and information to share, saying things n a way that people can understand, "words they can hear" so to speak...
my Aspie wandered off for a second, and then came back and said
"I don't know why the children at school said 'alert' every time I sat down to eat"
Ah - this has been haunting him a lot these few months, trying to come to grips with the bullying just before we started homeschooling, but he has not been so clear in his expression declaration of the events or his concerns, and he was not agitated, but thoughtful. Just yesterday we had discussed the Native American story in which the the elder tells the young brave that there are 2 wolves in each of us, Love and Fear; the one you feed is the one that "wins". He had tried to show me he was "feeding" his Fear Wolf by looking for things to break. Time to think carefully, Mom.
"Well, I think that some of them thought that it really was a joke. A____ clearly did it as a joke, but X____ clearly did it to be mean. You knew that. That's why you hit X____."
"But I was the one who was mean! I hit X____! I was supposed to tell a trusted friend!" NOW he's agitated! the high pitched screech, the shaking...
"Yes, that was mean, but X____ was mean first, so we know you had a reason to be mad.
And you could have used your gift of gab. You could have looked at X____ and said 'Don't say that to me!' You could have said to X____ 'Please stop, it is NOT funny.'"
A HUGE, deep genuine smile beamed across his face, his eyes continued to look far away, his body got still, and he slowly, quietly said, "yeah...."
Then he moved in for a cuddle.
I think this indicates that he forgave himself, and I am sooooo thankful!
Then he said, "I could use my Gift of Gab to come up behind them ,and then"
I interrupted him, "God loves you just as much as he loves those other kids. The Gift of Gab can also be called self advocacy. You have the ability to tell them that they should be nice to you, to please stop, and to go tell an adult. The more you talk, use your gift of gab, the more you be a friend, the more they can see your Love Wolf, the less they can hurt you"
He just kept beaming that smile, and his body was stayed STILL, and he muttered "yeah"...
I watched that smile, and for the first time in 2 years, I started thinking, "he'll be OK to go back to school. He will be able to tell them to treat him with respect and not feel forced to act out"
If only we kind find adults he can trust. He did NOT say that he should have told a "trusted adult"....
We have told him before that part of the reason we homeschooled is because we don't feel like the adults at the school were doing their best job to protect any of the children from bullying, but he has carried guilt about how he was bad, and how he had hurt others...
And he is right to feel bad, but only within the context of forgiveness.
And it is the Gift of Gab, that thing that pushes us and allows us to communicate with others, that will help us build forgiveness... we have been discussing all this in different terms for over a year, and only now seem to have hit on the vocabulary that enables forgiveness...
I will readily admit that a lack of verbal skills/ ability would be a significant "handicap" in using your Gift of Gab - but I have studied abroad (just can't meet the vocabulary), and struggled with strange cultures (learning about new families, moving across the country), and communication is NOT always about words. (usually it's about food when words can't be found - wink wink)
Genuine, True Friendliness is clear across whatever barriers. If that Woo is there, that drive to connect, that faith that there are no strangers, only friends not yet made - then connection will occur! But you have to be OPEN to it - because the format can be surprising. I think this is the essence of the "intuition", the "collective consciousness" that psychics are talking about... the unconditional love, the magic moments, new awareness that Autism brings...
Maybe the Gift of Gab isn't about words... maybe it's about self advocacy. Maybe it's about acknowledging the magic/ divine in you as much as you do in others... maybe it is about finally being brave enough to love yourself as you love others, not just love your neighbors as yourselves... expecting miscommunication and misunderstanding is part of the process, but it seems like that faith in humanity is part of it too.
I have worked from the time my children were infants to help them believe the world is their Friend, to automatically assume the best of people. Apparently It is working?
And some BIG insights of the "Gift of Gab".
We awoke to pinching and tickling as we decided who had green "on" (my kiddo wasn't letting me get away with green nail polish, but he was naked, so he was on the defense...) Then we settled into Irish traditions like the shamrock (being the Holy Trinity) and the kissing of the Blarney Stone. After pretending to be a leprechaun for a little bit, we moved on the to Gift of Gab!
We talked about how we (the family) have the Gift in different ways. For some the Gift of Gab has to do with Woo (from the Strengths Psychology - the idea that everyone is a friend like a politician or salesman has) while for other the Gift of Gab is about story telling and dramatic narrative, but it can also be just having lots of detail and information to share, saying things n a way that people can understand, "words they can hear" so to speak...
my Aspie wandered off for a second, and then came back and said
"I don't know why the children at school said 'alert' every time I sat down to eat"
Ah - this has been haunting him a lot these few months, trying to come to grips with the bullying just before we started homeschooling, but he has not been so clear in his expression declaration of the events or his concerns, and he was not agitated, but thoughtful. Just yesterday we had discussed the Native American story in which the the elder tells the young brave that there are 2 wolves in each of us, Love and Fear; the one you feed is the one that "wins". He had tried to show me he was "feeding" his Fear Wolf by looking for things to break. Time to think carefully, Mom.
"Well, I think that some of them thought that it really was a joke. A____ clearly did it as a joke, but X____ clearly did it to be mean. You knew that. That's why you hit X____."
"But I was the one who was mean! I hit X____! I was supposed to tell a trusted friend!" NOW he's agitated! the high pitched screech, the shaking...
"Yes, that was mean, but X____ was mean first, so we know you had a reason to be mad.
And you could have used your gift of gab. You could have looked at X____ and said 'Don't say that to me!' You could have said to X____ 'Please stop, it is NOT funny.'"
A HUGE, deep genuine smile beamed across his face, his eyes continued to look far away, his body got still, and he slowly, quietly said, "yeah...."
Then he moved in for a cuddle.
I think this indicates that he forgave himself, and I am sooooo thankful!
Then he said, "I could use my Gift of Gab to come up behind them ,and then"
I interrupted him, "God loves you just as much as he loves those other kids. The Gift of Gab can also be called self advocacy. You have the ability to tell them that they should be nice to you, to please stop, and to go tell an adult. The more you talk, use your gift of gab, the more you be a friend, the more they can see your Love Wolf, the less they can hurt you"
He just kept beaming that smile, and his body was stayed STILL, and he muttered "yeah"...
I watched that smile, and for the first time in 2 years, I started thinking, "he'll be OK to go back to school. He will be able to tell them to treat him with respect and not feel forced to act out"
If only we kind find adults he can trust. He did NOT say that he should have told a "trusted adult"....
We have told him before that part of the reason we homeschooled is because we don't feel like the adults at the school were doing their best job to protect any of the children from bullying, but he has carried guilt about how he was bad, and how he had hurt others...
And he is right to feel bad, but only within the context of forgiveness.
And it is the Gift of Gab, that thing that pushes us and allows us to communicate with others, that will help us build forgiveness... we have been discussing all this in different terms for over a year, and only now seem to have hit on the vocabulary that enables forgiveness...
I will readily admit that a lack of verbal skills/ ability would be a significant "handicap" in using your Gift of Gab - but I have studied abroad (just can't meet the vocabulary), and struggled with strange cultures (learning about new families, moving across the country), and communication is NOT always about words. (usually it's about food when words can't be found - wink wink)
Genuine, True Friendliness is clear across whatever barriers. If that Woo is there, that drive to connect, that faith that there are no strangers, only friends not yet made - then connection will occur! But you have to be OPEN to it - because the format can be surprising. I think this is the essence of the "intuition", the "collective consciousness" that psychics are talking about... the unconditional love, the magic moments, new awareness that Autism brings...
Maybe the Gift of Gab isn't about words... maybe it's about self advocacy. Maybe it's about acknowledging the magic/ divine in you as much as you do in others... maybe it is about finally being brave enough to love yourself as you love others, not just love your neighbors as yourselves... expecting miscommunication and misunderstanding is part of the process, but it seems like that faith in humanity is part of it too.
I have worked from the time my children were infants to help them believe the world is their Friend, to automatically assume the best of people. Apparently It is working?
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