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

dragon pups

dragon pups

Saturday, May 19, 2012

Changing by Choice

I was thinking about all my private drama today... about the power struggles at work, and the tension with family in watching the kids, and the gnawing fear about finances.. I was thinking about how yesterday I felt like I was sinking into my own private hell and I wanted to remind myself that the world is bigger than just my drama...

MAYBE I was just trying to convince myself that things really aren't THAT bad by comparison...

And I remembered...

A year ago this month my son was suffering from The Horrible Rash.  About this time we were 5 weeks into his bout with HSP (Heinoch Scholein Purpua - a rare autoimmune disorder).  This would have been the point at which he was not only covered with red and purple blotches as his capillaries exploded, but we had been to the ER twice because he vomited every evening.  He was unable to walk any evening after 4:30 pm because the joint swelling was too painful. His scrotum had turned a solid dark burgundy. He was missing lots of school. He would have less rash every morning and more every night.  We were having his urine tested weekly to be sure that he wasn't going to lose a kidney.  This is about the time we went to the pediatric immunologist at UVA and were told that 50% of patients have "kidney involvement", and that it had to go on for another 6 to 7 weeks before any kind of treatment would even be considered.  We were told what 3 doctors and WebMD had already told us: there is NO treatment, it simply goes until it doesn't.  The developmental pediatrician at UVA told us it was clearly stress related, which no other doctor would deny or support.

At this time last year I watched my 6 year old screaming in pain to be picked up and carried when he walked off the bus every afternoon.  At this time last year I watched my 6 year old's body attack itself every day.  At this time last year my son hurt, and didn't get better, and there was NOTHING we could do about it...

You know... things are NOT that bad right now.  My children are SAFE and they are HEALTHY and they are LAUGHING.  

I remember a conversation I had with another special needs dad last summer who's family was encountering some profound changes.  I remember telling him that I was ready for meteors, or unicorns, or the trees to get up and walk away...

A teacher told me today that she works with many parents of special needs kids that are not as accepting of their child's "specialness" as I am.   When you think you will loose even what you get, there is nothing left to fear.  It's not about clinging to the hope of a cure, or about mourning the loss of dreams, or about doing the therapy "right" so there's a chance of independent living.

Damn it, CHERISH e-v-e-r-y s-i-n-g-l-e h-a-p-p-y m-o-m-e-n-t!!!!!!!!!!!!!!!  

I have often been haunted by a clip that we saw in middle school about the Holocaust. They were interviewing survivors and trying to impress on us as students the horrendous scope of it. It was gross and riveting.  But I didn't feel FEAR until one very elderly woman in an overly bright colored dress said, "Hold on to the happy memories.  Work to keep them - because you will NEVER be able to forget the bad ones."

THIS day I am going to CHOSE to dwell in happy memories, to ponder the gift of my loving family and friends, to fill myself with the love of playing and giggling.  I will take my medicine, and I will deny the tears, and a small room in the back of my head will still be looking for ways to get out of this scrape, but I will NOT let them absorb me.  

'Cuz dude, it is NOT THAT BAD...

Monday, May 14, 2012

Names of Roads

All roads have names.

Seems pretty straight forward, but my head just keeps repeating it.  That means there is a lesson there eluding my consciousness. So I keep repeating until the rest comes.

All roads have names.

We got lost yesterday, my husband & I.  We exited the freeway because it was jammed up, no progress, and we just headed west until we hit a road we knew.  We ended up trekking along the north side of the Potomac River: from Maryland, to West Virginia and finally back to Virginia.  It started at an area of BIG BIG houses, clearly from BIG BIG money.  Like Italian Villa big, or Country Estate big... statuary in the driveways, fountains with beautiful landscaping, 3 story homes with cottages out back, giant gates with uninviting/ privacy fences.  That changed into farm country - the real country estates.  It was clearly "horse country" - still big money.  the barns were huge and numerous, horse trails criss-crossed the road, long white or black fences, with dressage rings and jumping gates seen often.  We passed a big sign for a horse rescue farm.  Then we got into real farm country. The houses got smaller, more modest, the machinery was more evident, the signs hand painted for eggs, or veggies, or hay...

And all along there were so many interesting road names.

All roads have names...

Some of the names indicated direction.  We were on a "pike" for a while that sported the names of the towns it passed through.  We knew we were on the "main drag" because the signs showing the upcoming towns matched the name of the road we were on.  I was struck at how some roads are named for the places they connect.

All roads have names...

Some names were meant to inspire.  Especially in that area with big money, there were roads named for famous places, or for artists. They gave you an idea of what you would find there, like the lakeside estates, or still grottoes.  It was all about what was "out there" that was fabulous, whether man or nature made.  I was struck at how the some roads are named for where we want them to go.

All roads have names...

Many names indicated possession/ ownership.  Especially as we got into the old farm country, the road names started reflecting family surnames, or someone's mill or farm.  One road was named for a colored barn.  Another was named for the store at the end.  I was struck at how some roads and named for who got there first, or stayed the longest.

All roads have names...

A few roads were very clear explanations.  The names labeled how they were built or when the were built, or what purpose they served.  Petit Way and New Design Road seemed pretty clear to me.  I was struck at how some roads are named for their novelty.

All roads have names...

What is the name of MY road?

CONTINUED PONDERING: So if the road is the journey, how do we know what the journey is for? Isn't the purpose of naming the road to let you know about the journey?  So roads are named for their destinations, the stuff they pass, or the nature of the road itself.... but not all 3 of those.  

So maybe, if I am only looking at the end (whether it's where it really goes or where I want it to go) I can't really see the stuff along the road, or the road itself... and then If I am busy looking at the stuff along the road, I'm not really paying attention to where I am going, or what the road conditions are... and maybe if I am focused on the very nature of the road I will miss the stuff along it and never know if I  arrive.  
MAYBE I need to decide what I am willing to miss, not just what I am willing to look for...
MAYBE the road changes names.   Perhaps as I travel along it  what I need from and for the road changes. 
MAYBE there are times in my life when I need to concentrate on where I am going, and other times when I need to look around as I travel, and other times when I need to observe the wonder of the road itself.
And MAYBE the road doesn't actually change, I do.  Or maybe, we change together...

Sunday, May 13, 2012

Mother's Day

So, this time of year (spring) is very busy for me, but my head is still thinking madly, feeling busily, working desperately...  The connections between several events are wandering around in my head trying to make a pleasant picture.

Today is Mother's Day.  I am celebrating without my children.  They are gone to their grandparents.  Our financial and work situations have conspired against us to create an... opportunity... for my children to spend an extended period away.  It brings me conflicted feelings.

I feel incredibly guilty for being apart from them.  Isn't the whole reason we are homeschooling because my children need a MOTHER - an adult to help interface the world to their Asperger's quirks?  Their sense of world order is... distinctive... and requires facilitation.  Meeting half way means the world has to come to them as much as they have to come to the world.  And it is adults who create, enforce the "laws" of the "world", who will be able to see to it that the world comes to them too.  I feel bad that I have "sent them away", even if it is a good place and time for them to go.

And I feel incredibly thankful that my family is capable of supporting us.  Supporting my efforts to parent as well as supporting my children in their growth.  I am so very very luck to have extended family that has the resources of time and understanding to walk with us on this journey into, not just child rearing, but rearing children on the Spectrum.   We are not all on the exact same page, but we are all focused on making those kids KNOW they are loved and valuable, arming them with the coping strategies and strengths they will need as they get older.

But there are other Truths.  First of all, I work.  Yes, it is seasonal, and it is not fabulously important to the whole universe, but it is important to ME and to the people I work with.  I am a camp and swim instructor.  I Teach, about biology, about human dynamics, and self-control, about connecting to new experiences, and I teach the life saving skill of swimming.  I ENJOY my work.  I enjoy where and how I work.  I truly, deeply love the kids who work for me as lifeguards, and the kids who come to me for swim lessons, and the managers over me who support my ability to teach.  I love the "Ah-Ha!" moments, and the sacred campfire songs, and the time outside, and sensory experiences of water.  I feel both guilty and satisfied about all that.  Mothering should be, IS, my primary responsibility.  But do I HAVE to mother just my own kids?  Isn't it Ok, great even, if my "mothering" can help, teach, facilitate others to strength and independence?

When my daughter was born, I was working at a small independent Montessori school.  The daughter of the founder/ "principal" of the school had just reached adulthood (like finishing up a college degree) and also worked at the school. She was an "only" child.  But she wasn't.  Her jealousy was reserved for the school itself, her "sibling", the thing that took her mother's time and divided the mother's attention.  I am very Montessori in nature, and I TRULY believe that each of us is created to work, to do a job that is divinely assigned to us; we each have a purpose.  I came to realize... well, pretty much just decided... that my children should see the same.  That by seeing my Work (whatever that might be) as a "sibling"; they too would come to know that they have a divine purpose by my example; they would practice that we are all innately unique, independent, and interconnected - they would see the Divine Plan at work.  They needed to know that they had to share me.

It was not until a few years later that I came to the place I work now, and even further that I came to the position that I now hold.  I know, with every fiber of my being, that the work I do as a camp  instructor and as a swim instructor is IMPORTANT.  There are lots of nice academic reasons about brain-based learning and experiential education, and statistics about water safety and drownings, but I KNOW because I connect with my students, because everyday I work I am getting positive feedback from my coworkers, my students and the adults observing us (the parents watching us).  I am SO proud of that.  But also kinda guilty because it does mean time away from my children, the 2 that God assigned ME to teach.

But then again...

I have been around, seen LOTS of schools, LOTS of families, and have made some decisions about what kind of person I want to be, what kind of parent I want to be, what kind of people I want my kids to be...

There is no doubt that I am very "alpha mommy", that I prefer being in charge, and I have a lot of "presence" (I've decided that is a symptom of  being raised in a First Responder's family).  I am VERY careful about not smothering my children.  That was thrown in my face when my son was only 1 month old.  He died - he quit breathing in my hands, his eyes rolled up in his head and he "turned off" (that's the only way I can explain it).  I gave him rescue breaths, cleared his airway, and he turned "on" again. We went to the hospital and spent 3 days on oxygen.  I was MAD at God. How could He do this to me?! The baby wouldn't remember, this was clearly a lesson for ME.  I prayed and railed, and came to see that God was reminding me that life is HIS, and that I needed to let that child be who He destined him to be.  That is my Autistic/ Asperger's child.

Montessori education is MUCH about independence, about creating a space for children to own and drive their own learning, about "student led curriculum" and encouraging innate abilities.  Like I said, I like that, I live that, I believe that.  SO... I tend to let me kids practice that.  Not everyone is at peace with that, but that's Ok too.  And it has been kinda hard with the Autism/ Asperger's.  He NEEDS a facilitator, but he also NEEDS to OWN his own coping strategies.  "Successful" autistic people are those who can effectively communicate their needs, and openly ask for and accept the assistance that supports them.  This is a discussion I have had with MANY educators & therapists (and family members).  THINK about it!  If someone came to you and openly said, "hey, I know that I work better with the lights out [music on/ in the morning/ whatever]" aren't you more likely to accommodate that need - in a relationship (family), in work (supervisor)?  The whole SPD thing, the whole Asperger's thing is about arming my kid with a strategy that makes the people around him comfortable with his "weirdness".  As I said in an earlier post, you just gotta own it.

When I was pregnant with my first, I read in a Spanish parenting magazine in the doctor's office  an article on separation anxiety. (I don't know if that's what it's called for people, but that is what it is called for dogs).  This article, written in Spanish, for the Hispanic population, credited Hispanic society with having children who were less anxious about leaving mom, about going to new places, who just seemed to deal with the flow better.  Their explanation was that Hispanic society has a greater emphasis on extended family.  Basically they said that the baby gets passed around more, so it comes to see the leadership/ safety of several adult role models as the norm.  The continued postulation there is that the child has less anxiety as they grow because they come to expect all adults to help/ care for them.  The family shares the responsibility and the child has more supporting connections.  

I decided right then that I wanted my child to be like that.  I remember being "shared" by my parents.  My parents were the first to have children in their crowd, and we were everyone's kids.  We have MANY MANY "Dutch" Aunts and Uncles, "extra" grandmothers, active God parents. As we got older it was apparent that these people were interested in us as human beings, not just as "Our Friend's kids".  They threatened my boyfriend (eventual husband) when he started courting, they gave us (my brother & I) advice on college and jobs, they provided valuable resources for life changing events, went out of their way to be a part of our lives even when we moved across the country.  Many are still keeping track of me on Facebook.  These relationships have NOT subtracted from the strength of my relationships with my parents, they have strengthened them - because it provides me a place to put parents in perspective, to "see how they are as co workers, friends, and neighbors.  These relationships with the adults who knew my parents help me to know my parents as PEOPLE, not just as "parents" - and that can be hard when you are dealing with a family history of "Asperger's"/ "weirdness" - that inability to communicate/ verbalize things [like emotions] effectively.  It is one of my coping strategies, one of the ways I learned to look for "why" and "how".  These "Dutch" relationships let me have many adult role models and make more informed decisions about "who" I wanted to be.  I WANT my kids to have that.  THEY DESERVE IT!!! I need to share my kids.

So I feel a sense of pride that my kids can go to their grandparent's for an extended visit.  While I feel guilty, I also know that it makes them stronger.  One of my best friends took me out for a "Mother's Day" breakfast yesterday, and told me she admired how independent my kids are.  They put themselves to bed, they get their own snacks, they [try] to clean up their own messes.  I have a 5 year old and a 7 year old who can go to bed without being tucked in, who have spent many nights away from home and without parents, and they are OK with it.  They have coping strategies, routines, and are still surrounded by adults who love and support them, even when they are difficult to love and support.

We are so early in this journey, there is so much living and learning and growing yet to do.  Lord, I hope I don't screw this up, Lord I hope that they get everything they need, and most of what they want, Lord I hope that it really IS gonna be better than just OK, Lord I hope that every kid I teach and work with recognizes that I genuinely care for them and that the knowledge is helpful in some way, Lord I hope that the guilt will set me free but that pride doesn't ruin us, Lord I hope that my family is not angry that I need to lean so heavily upon them, Lord I hope we are striking that balance between independence and interdependence...

Mostly, Lord, I hope that it's Your plan I am following and I am not just making all this shit up.

So Happy Mother's day to ALL of you: to the mother's out there who are enjoying their families, to the "village" out there helping me raise MY kids, and even to me.  I am now going to go get my nails done. And then my husband is taking me to Ikea for meatballs.

Thursday, May 3, 2012

Old Mountain Magic

Speak, Water, Speak
Softly, I will listen…

A voice that is both
Older than the verdant life
Pulsing, vibrating around us,
Yet younger…

Your bubbling giggle speaks,
Summing up the ageless wisdom
Of the wee stones and great boulders
Rounded by your persistent passage.

Speak, Water, Speak
Softly, I will hear…

Not with these too dull ears
Not even with this questing heart…

Somehow, there is an aching
Deeper,  fuller than mere flesh,
More elemental than a feeling,

Right HERE
Within me, next to me, around me…
Just wait…
I recognize, I KNOW!

Fairy’s wings rustle, flutter,
Gnomish eyes seek, watch…
Ancient knowledge SINGS!

Speak, Water, Speak
I long to comprehend…

Written By Lorilei Dreibelbis
April 2012
For Avery Born
Inspired by a hayride to Clark’s Gap, Virginia