Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Saturday, April 11, 2015

Autism Awareness...

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.

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.