musings

A Stupidly Optimistic Parent

Mon, 07 May 2012 20:05:03 +0100

This has been ringing in my mind for a month or so. Its a quote from one of my favorite movies - CLUE, starring Tim Curry, Martin Mull, Madeline Kahn and a host of other brilliant comic actors. Yes, it is a movie based on the board game.

The line comes from Madeline Kahn's character, Mrs. White. It is revealed that she has had several husbands, all of whom have died under suspicious circumstances. When she is asked, "What was your husband like?", she replies:

"He was always a stupidly optimistic man. I'm afraid it came as a great shock to him when he died."
In context, it is a hilarious line. In my life, I've been thinking of adopting it as a life philosophy.

Because actually I am a stupidly optimistic person. When people ask for some life history, I've noted that they tend towards a reaction of "Oh that's awful." "What terrible things have happened to you." But, honestly, I just don't see it that way. I've always made it sort of a point to say, "I'm no pollyanna, but..." BUT the reality is, I am a pollyanna.

I am stupidly optimistic.

Stupidly because I cling to a happy and positive view, despite all evidence to the contrary. Stupidly because in my silly and trivial way, I treasure each and every dumb joke, happy thought and silly idea that comes my way. Stupidly because I refuse beyond all reason to LEARN that the world is not friendly, or happy or good.

I can't help it. Even in the midst of a generation of sarcastic and snarky doom-sayers, I stupidly cling to a view that the snark is only in fun; the sarcasm is a tool, not an ends and not a philosophy. I can't help but see the good in the world, the light -- that happy thing, the place where compassion and kindness hold sway over all. I'm just wired that way.

Because so many of the children I know and enjoy and value and love (including my own) fall somewhere on the Autism Spectrum, I think I must live in a different universe than many other people. I find Aspies a fun and interesting group; I enjoy the challenge of figuring out a way of seeing the world so different from my own; I focus on differences as special strengths and not as special needs.

Maybe its an expression of my own geeky childhood that I still think in super-hero terms. But to me, that child who can quote you every statistic of a steel-type Pokemon is Superman. To me, that child who corrects anyone who doesn't make a literally accurate statement in her presence is Captain America. Amazing gifts being exhibited by amazing people.

So, as a stupidly optimistic parent, I am still convinced that the world will come to see my children as I do. Not as people with limited social skills; not as the ones who talk non-stop about preferred topics, or tell event planners how boring their event is. I believe that one day, other people will not try to argue with my children, or tell me how to parent them, or see them as pain-in-the-neck honest.

Someday, everyone else will see that these children are brilliantly perceptive in their own topics. That they are honest because they live fully as who they are, and not as someone else wants them to be. That their inability to enter or exit gracefully from casual conversation means that they actually have a very true sense of what is IMPORTANT, and what really is not. That their creativity and passion is necessary to the world, not because they are somehow LESS than others, but because they are exceptionally more.

See? Stupidly optimistic.

Where do you live?

Mon, 12 Mar 2012 19:32:30 +0100

Its a simple question, but much like Robert Fulghum, I can't stop myself from playing with simple questions. Robert Fulghum devoted almost an entire chapter to answers to the question, "What do you do?"

But my favorite is "Where do you live?"

#1 answer : In God's Presence. Its what I try to remember daily, although I often forget. I live in God's presence. That's my address, that's the ground of being, that's the background. I can't do anything apart from God. Not just because of my vocation, and sometimes even in spite of it. I see the evidence of God's care and grace all around me. Its a great place to live.

#2 answer: In a small town. Small enough that if my son missed the middle school bus, his sister's grade-school bus driver would drive him over when she came by. Small enough to know most of the parents of my children's classmates. Small enough to effect change. Small enough, too, to have difficulty escaping gossip or rumor. And small enough to worry about my children having a less diverse view of the world than I desire for them. And yet small enough to know how embraced they feel. Its a great place to live.

#3 answer: In hope. As a parent, I most often live in this place. I have to. I have so many many hopes for my children. Not just far-ranging grand hopes for the far future--although those live with me as well. I hope my son will make some friends. I hope my daughter will stop putting doll clothes on the cat. I hope I'll remember to turn the stove off before I boil another pot dry. I hope the world, a place I think is pretty awesome, will be even better for my children. I hope to one day have grandchildren. I hope my son and daughter will pass on every ounce of love I've given them (and maybe only 1/10 of the fussing.) All in all, its a great place to live.

Where do I live? Here, there and everywhere.

My Aspie Son and Dancing Daughter

Tue, 28 Feb 2012 15:14:13 +0100

My Aspie Son... Those three words begin so many conversations in my head, in my work, in my writing. My oldest child, my teenager, my boy. The one who only started sleeping all night by himself THIS YEAR at age 15. The one who still needs my complete attention every morning just to get him dressed and out the door.

My Aspie Son... If I say it, and you know anything at all about Autism and the Spectrum, you probably already have a vision of him. You may be way off in many ways, but you probably already know about his meltdowns, his need for sameness, his anxiety, his inability to make friends--even his sadness at not having any.

My Aspie Son... To some degree, it's convenient to have a "label" for my son -- it shortens the conversation, it helps people understand us faster. But it's also misleading. He's much more complex a person than "Aspie" might imply. He is incredibly funny, and able to turn a phrase we call "Kippisms"-- a modern day comedian/philosopher. We have so many things in common -- we both love poetry and science fiction. We both love movies and music. We are both ardent liberals in politics. We are both interested in advocating for people who have less power.

My Aspie Son... isn't the whole story of our family, although by far the LOUDEST story, the most obvious, the story that sticks out.

My Aspie Son... Sometimes it seems he dominates the family -- that he is at the center of our focus.

But it isn't true really. I've been thinking a lot recently about balance...about how to balance the very different needs of the three people in our family. It's HARD. The way we live it out isn't always reflected in what I write about--the little moments of sweetness and contentment don't make the page nearly as much as the big dramatic moments.

So I'm trying to start more conversations---in my head, in my work, in my writing-- with My Daughter.

My Daughter... the one who rolls her eyes at me one minute, and calls me from school to say she misses me.

My Sweet Daughter... who dances like a dream, who is extraordinarily beautiful, who loves babies, and little kids, and playing dolls.

My Funny Daughter...who still thinks Mommy is the most wonderful person in the world--and the meanest.

My Dancing Daughter... who is competing in two weeks at her first dance competition. We have become ardent fans of "Dance Moms" --not because the Moms are great. They're not, they're awful and far too caught up in arguing about minor matters. They're terrible at parenting at least on camera. No, we watch "Dance Moms' because my daughter is visualizing herself on stage, winning, like Chloe or Maddie.

My Dream Daughter... who is nervous but excited--whose dreams are growing bigger before my eyes. I am so excited for her, and so proud. At the same time, I am nervous about her resilience. If her team does not win, will she be crushed? Will she be able to pick herself up and dance on? I've tried so hard to give her good examples of keeping life in perspective. But the greatest male influence in her life is her brother--and resilient, balanced and in perspective he is NOT.

My Lovely Daughter... she holds the dreams of my heart, but I hope and pray they rest lightly on her--I want only for her to be a STRONG and HAPPY woman. I feel like I struggle daily to give her the tools to be so.

Heck, I struggle daily to be so myself.

A Valentine to my Children

Mon, 13 Feb 2012 18:13:50 +0100

Three

Its's a Magic Number

We have THREE in our family and that's a magic number.

You may be chuckling if you remember that song from "SchoolHouse Rock." It's true for my family though--we are three and that's our magic number.

We are a triangle family -- Mom and Valerie and Kenneth -- one at each point of the triangle.
Sometimes we are EQUILATERAL -- all three of us occupying an equal amount of space and effort and time in the family.
But that's pretty rare.

It feels pretty good when we get here. All three of us laughing together, or working together.

Sometimes, though, it feels to me like we are ISOSCELES -- Mom's side of the triangle is shorter that theirs -- on those days when I feel short-changed, frustrated, harassed -- when no one will do their chore, or pick up after themselves, or demand more of me than I think I can give.

But on the eve of Valentine's Day, I want my children to know a little more about triangles. Specifically, I want them to know about Pythagoras' theorem.

Because the theorem shows that when we are RIGHT -- at right angles, or right with one another--when we acknowledge the enormous amount of work and love and effort each of us puts into our family-- then the larger area takes up all the smaller ones.

No matter how big what we do or what we demand seems to the rest of the family, our family can contain it all. We will always have each other, no matter what.

I will always love you. I will always be there for you. I will always care about how you are, and I will always love who you are.

NO MATTER WHAT.

Happy Valentine's Day to my darlings. WE are a magic number.

Blessed Are the Meek?

Mon, 23 Jan 2012 15:09:32 +0100

Who will inherit the Kingdom of God? In the beatitudes, Jesus said the blessed meek would do so. Strictly speaking, this means trouble for my son.

As an Aspie, my son would really never be described as meek.

adjective, -er, -est.

humbly patient or docile, as under provocation from others.

overly submissive or compliant; spiritless; tame.

Obsolete . gentle; kind.

I thought the following article* explained him quite well:

They are highly verbal individuals.

Pro: Many people with Asperger's have very large vocabularies. They have been known to use obscure and unusual words in normal everyday conversations, even as young children. They can also speak endlessly about a topic they are extremely interested in with accuracy, great knowledge, and passion.

Con: Many Aspies are totally unaware that other people don't want to listen to an never-ending litany of details about topics like the horny toad and its mating habits. They will also carry on long one-sided conversations, and fail to give the listener a chance to ask questions or add their thoughts to the exchange.

They become isolated from others.

Pro: Most people can't stand to be isolated from others. Typical individuals crave and need human companionship. One characteristic of an Aspie is their ability to not only endure isolation, but even prefer it. In jobs that may require long spells of working alone, many Aspies are able to excel. Due to the fact that they don't always have a need to interact with others (which can cause them to become anxious or uncomfortable), some Aspie's have proven to be exemplary employees in jobs which require long solitary working hours.

Con: Although they may prefer to be alone, Asperger's individuals admit to feeling depressed and lonely. They are isolated not by choice, but because of their inability to socially engage others.

They enjoy routine or sameness.

Pro: Many people enjoy having a routine. However the average person becomes easily bored doing the same thing all the time. Aspies don't mind sameness. Most prefer to keep their world very organized and predictable. They find comfort and peace in establishing daily or regular routines.

Con: When their routine is changed or becomes unpredictable some Aspies, can react extremely negatively. Caregivers and parents have reported tantrums and even physical aggression by Asperger's children and adults when something unexpected occurs in their routine. Some Asperger adults admit to become verbally or physically threatening because changes in their routine causes them to feel a lack of control.

They can be extremely imaginative.

Pro: Some children and even adults with Asperger's have highly developed imaginative worlds. Since they tend to be extremely detailed with topics in which they have a high interest, their imaginative worlds can help them do well in careers that demand paying great attention to detail and being well organized.

Con: The typical person leaves his or her imaginary friends and world behind after they enter the preteen years. Some Asperger's individuals continue to find solace and safety in their imaginary world. This only serves to further isolate them andhelp them avoid fully interacting in society.

Yup Yup Yup. He can also be wickedly funny, bitingly sarcastic and painfully paranoid. He wavers between thinking he is far superior to all human beings and thinking he is the worst one on the planet.

He thinks deeply, feels deeply and cares deeply. I have no doubt that will inherit the Kingdom of God. He loves God, he wants God, he welcomes God in.

But please dear Lord, help us if meekness really is the defining characteristic.

*http://www.healthguideinfo.com/aspergers-syndrome/p111307/

What Was That? I Wasn't Paying Attention

Tue, 17 Jan 2012 15:51:30 +0100

You'll never know what I wrote ten minutes ago. Ten minutes ago, I wrote a lovely and very long blog about how having ADD effected my early childhood and teen years. It was insightful and profound. As I pushed "save," my computer flashed a screen to say, "We are rebuilding your blog app. Save your work and post in a few minutes." I did so. And now its gone.

It led me to the same impulse, the same thought that prompted my blog about having ADD. As I get older, I am getting more organized and less affected by my ADD. Or so I think. Until I run into something I didn't notice. And all the past times in my life when I failed, or was embarrassed, or lost something because I WASN'T PAYING ATTENTION come flooding back. Because, to be honest, I read the notice through very quickly. Maybe it meant to save the blog into Word. Maybe it meant to copy and paste the blog into another editor and paste it in later. But I wasn't paying attention.

This doesn't happen to me nearly as much as it used to. In grade school, even though I love music, I never played an instrument or joined band because I forgot to get the permission slips in on time. In high school, I often skipped gym in order to go to the library and read. And write papers for AP English that I'd forgotten about until that day. I skipped so many gym classes that, in my senior year, I had to take 5 classes of gym a day to catch up in order to graduate. And I really hated gym. My love was dance. Not volleyball. Not basketball.

I went to the only college I applied to -- because I didn't get my act together in time to get any other applications in to any other colleges. I went to the college closest to my high school because it was too hard to focus on looking further afield.

No one knew I had ADD. We all suspected my sister did -- she couldn't sit still if her life depended on it. But my tendency to feel helpless and avoid trying to tidy up my room were written down to laziness. And my forgetfulness in doing projects or getting papers in on time was put down to stubbornness or "rebellion." Because I was an "A" student, no one ever really noticed how often I lost my purse, or misplaced my keys. Called the "absent-minded professor" in my family meant that everyone believed my disorganization, forgetfulness, and inability to force myself to do things I hated were character foibles, rather than symptoms of a brain that just couldn't pull it together.

Never would I say that having ADD is ALL about negative aspects. My ability to "hyperfocus" is common for those with ADD, and for those on the autism spectrum. If I am focused on a topic or task, I can excel at it. Of course, when I am no longer paying attention, it can often seem as if I've forgotten how to do it at all. That this is irritating to employers is an understatement. As a VP of marketing, I have painful memories of regional VP's who just couldn't understand how I could write a brilliant presentation for a client, and forget the details of that client's contract a minute later. But that's the way it is with my brain.

It is only recently that I've become aware that my intense interest in people I've just met is usually followed by a ratcheting down of interest as I know them longer. Its not that I am less fond of them, not at all. Its just that I really do lack the capacity to pay attention for long periods of time.

Through the years, I am positive this aspect of having ADD has caused pain to people around me. Case in point: I recently ran across someone on Facebook I'll call Jane, though that is not her real name. Jane and I went to college together. We were good enough friends that when she graduated the year after me, I persuaded her to move to Boston to be my roommate. After a year and a half of living together, I moved into a studio apartment in order to be closer to someone I was dating. I only saw her a few times after that. There was no disinterest or malice on my part -- but having spent my entire life moving (I've never lived in any one place more than a few years) I simply didn't know how to pay attention to people in my life over a long term. I didn't think much of our drifting apart--it happens right?

But a few years ago, a mutual friend asked me a poser: "Did Jane ever forgive you for abandoning her?" I was shocked. It was a version of our friendship story I'd never even considered.

This is all surfacing for me as I watch my Aspie teen struggle with understanding friendship and navigating personal relationships. at 15, he is still stuck in 6 year old "my friends are the people I tease" mode. And while he is undeniably brilliant, and uncommonly funny, his cleverness and wit aren't endearing him to people he likes. He doesn't really know how to make or keep friends.

As I struggle to find ways to help him, I am coming right bump against my own shortcomings in that direction. Because I can converse with anyone, because I excel in social settings due to my natural curiosity and love of people, I seem to be better at relationships than I really am. The two of us are going to have to learn how to do this together, I guess.

I'll start with this: I am going on Facebook and putting in a friend request to "Jane." We'll see what happens.

Would you if you could?

Tue, 17 Jan 2012 14:35:36 +0100

Recently, my Aspie son and I watched all the X-Men movies in order. We frequently do this--take a series of movies, watch them in order, then critique the nuances. As an aspiring filmmaker, my son likes to look for hidden themes and "memes" the director may have included.

In case you don't know the story of X-Men, it involves mutated humans who, through their mutation, possess supernatural abilities. The X-men are leery of "normal" humans, don't understand their motivations, but find themselves in a position of saving the world for all from the bad/evil/misguided folks who seek world domination. X-Men is particular in its portrayal of "normal" humanity's reaction to the X-Men -- Fear, Mistrust, and even Hatred.

The parallels to our autistic children are unmistakable.

As an Aspie, my child has abilities I clearly do not, especially considering that I have ADHD. His powers of concentration and attention to detail are phenomenal. He notices (and expects everyone else to notice as well!) details that most of us miss entirely.
Like an X-Man, my son can be misunderstood. Like an X-Man, he really is altruistic, although he may not always seem warm and fuzzy in his approach.

The last movie we watched was a story of a possible antidote to the mutation that produced the X-Men. Some X-Men wanted to take the antidote and live a "normal" life. Some X-Men were FORCED to take the antidote (this is the hinge of the drama in the plot.) It raised the question -- "If there were a cure for autism, would you want it?"

This question was also raised this past week at a Diocesan Resource Day in a workshop I offered. I'll write more about the workshop, but I wanted to share my answer: "First, my son needs to know all the things he values in himself, so he can truly know his own worth. Then he needs to know all that others value in him, so he can understand his place in the world. Then he will have to decide for himself."

Would he be the same child without autism? No. Would his life be easier without autism? Probably. The question is really, would his life be better without autism?

I want to share with you a poem he wrote in 2nd grade. It speaks to me of the wonder of a child whose brain operates so very differently than mine (Praise God!)

WHATIFS

As soon as I start to watch TV,
Many whatifs whisper to me:
Whatif the Earth freezes?
Whatif the Earth sneezes?
Whatif a bunny bites me?
Whatif I can’t drink my tea?
Whatif they run out of Lunch?
Whatif I don’t have anything to munch?
Whatif my desk comes alive?
Whatif the door counts to five?
Whatif there weren’t any video games?
Whatif a tree says his name is James?

As soon as I start to watch TV,
All these Whatifs whisper to me.

Your answer might be completely different. Please send your thoughts and ideas to HiWebRev@gmail.com or use the form on the home page of the website. --Rev. Rebecca Black

It's All in How You See...

Mon, 18 Jul 2011 03:38:10 +0100

Found this on a wordpress site (www.theotherside.wordpress.com)

LOVE the positive spin.

Discovery Criteria for Aspie…

A. A qualitative advantage in social interaction, as manifested by a majority of the following:

1. peer relationships characterized by absolute loyalty and impeccable dependability
2. free of sexist, “age-ist”, or culturalist biases; ability to regard others at “face value”
3. speaking one’s mind irrespective of social context or adherence to personal beliefs
4. ability to pursue personal theory or perspective despite conflicting evidence
5. seeking an audience or friends capable of: enthusiasm for unique interests and topics;
6. consideration of details; spending time discussing a topic that may not be of primary interest
7. listening without continual judgement or assumption
8. interested primarily in significant contributions to conversation; preferring to avoid ‘ritualistic small talk’ or socially trivial statements and superficial conversation.
9. seeking sincere, positive, genuine friends with an unassuming sense of humour

B. Fluent in “Aspergerese”, a social language characterized by at least three of the following:

1. a determination to seek the truth
2. conversation free of hidden meaning or agenda
3. advanced vocabulary and interest in words
4. fascination with word-based humour, such as puns
5. advanced use of pictorial metaphor

C. Cognitive skills characterized by at least four of the following:

1. strong preference for detail over gestalt
2. original, often unique perspective in problem solving
3. exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines
4. avid perseverance in gathering and cataloguing information on a topic of interest
5. persistence of thought
6. encyclopaedic or ‘CD ROM’ knowledge of one or more topics
7. knowledge of routines and a focused desire to maintain order and accuracy
8. clarity of values/decision making unaltered by political or financial factors

D. Additional possible features:

1. acute sensitivity to specific sensory experiences and stimuli, for example: hearing, touch, vision, and/or smell
2. strength in individual sports and games, particularly those involving endurance or visual accuracy, including rowing, swimming, bowling, chess
3. “social unsung hero” with trusting optimism: frequent victim of social weaknesses of others, while steadfast in the belief of the possibility of genuine friendship
4. increased probability over general population of attending university after high school
5. often take care of others outside the range of typical development

GUEST BLOGGER Seth Fowler writes for DADS of Autistic children

Wed, 15 Jun 2011 13:44:01 +0100

Autism--Dads: nothing to be ashamed about

This blog goes out to everyone but especially fathers of children with autism--since I too am a father of a 5-year-old precious boy who has autism and I can only speak for myself. This is also a reason why I wanted to insert snippets of thoughts and opinions in our new book, "Look At My Eyes" that SHOULD BE ON OUR FRONT DOOR STEP TODAY!!!! You can always find more information at www.lookatmyeyes.com.

When we realized William was not as typical as expected, I went through all the emotions...angry, sad, mad, worried, scared. I also was ashamed. It kills me just to type that but yeah, I was ashamed that I had a son that wasn't "typical" partly because I felt that I had a part in his being on the spectrum.

He has autism and I was ashamed. I felt as if it was partly my fault--I mean after all, I did contribute into his creation right?

So then I became ridden with guilt...what did I do to cause this? Do I have something inside me that is wrong genetically and I made William the way he is--am I to blame and did I curse him? For a long time I had to deal with this internally because I didn't think anyone would understand. I didn't want to talk to my wife about it because we were dealing with so many other issues and struggles and I didn't think she could relate.

I didn't do a good enough job of searching for a Father's Support Group...and even now I'm not sure there was a place for me to run, kicking and screaming for help.

Finally I came to terms that I don't care what caused William to have autism. I believe in a sovereign creator God who is all-knowing and therefore William and his condition wasn't a surprise to God and wasn't an accident. God gave William to us for a purpose--so whether it was genetic, medicinal, environmental--I don't care. He has a plan and purpose for me and for William and our family. Maybe it's to write this book and touch other's lives.

Maybe it's to help raise awareness and raise money for autism research. Maybe it's so I can blog my feelings on the Internet--after all, I am a male and we don't do a good enough job at sharing our feelings right?

But the biggest thing I have learned is that IT'S NOT YOUR FAULT. I think this is important for dads (and moms in a different way) to understand...just like we can make the rain stop or our hair grow or our favorite sports team to win every year...it's not your fault...once I realized that I wasn't ashamed in William anymore. I wasn't ashamed to be a father with a child with autism.

Yeah I'd love for William to be more "typical"...but I embrace William's differences and I love him for who he is and what he can do.

So fathers--as we approach Father's Day...it's not your fault your child is the way he/she is. You have to get past that and do what's best for your child...love them, teach them, encourage them, embrace them for what they are and who knows what they can be.

Use this opportunity to spread the word, use your gifts to help others, don't let autism defeat you.

GUEST BLOGGER SETH FOWLER: What it Must be Like Inside the Box

Tue, 24 May 2011 17:53:10 +0100

Guest Blogger Seth Fowler is co-author (with wife Melanie) of the newly released book : Look at My Eyes, available for order here from Brown Publishing. Read more about the Fowlers on their site by clicking here.

I often hear my 5-year-old son with autism as "being inside a box." I get that. He's in there somewhere...he reacts, he can speak a little bit, he feels and he knows when things are not how they should be. So it's not like he's just a shell of a person with nothing going on inside. In fact, we've tested his IQ and he's average to above average...he has been in a school for special needs children since he was three years old and he can read...not just small words but he can read words. His favorite thing to do these days, aside from "bumping" on the couch and swinging from the monkey bars, is to yell out letters of words...he might not know what the word is ex: he'll say..."S....A....M....S....U...N...G" and then yell out "TV!" Okay so he isn't familiar with major brands of electronics, but he is definitely in the box...somewhere.

What a dad wouldn't do to know what it's like to be inside that box. Please, please, please someone invent a device that will allow a parent to place something on my autistic child's head and I can hook it up to a TV and see what's going on in his mind. It has to be fascinating. I would bet that he's seeing colors and images and shapes that we never dreamed of. I bet that when he hears something he sees different things and sounds. Some of it might be scary, William didn't like the sound of fire trucks, ambulances or trains when he was younger...but what must it be like? Sure some of it is nothing but frustration--communication is so tough because he gets most frustrated when he's trying to communicate with us and we have no idea what he's saying. He gets angry and frustrated and we get frustrated because we want to help him and we can't.

I know other parents with children with autism and other special needs have wondered the same thing. Of course I wish my son communicated with me like typical child. Of course I'd rather not have to wonder what he's thinking and what he's saying. But this is the hand that we've been dealt. We have to make the most of our situation and strive to give our son the best chance to succeed as possible...that's what ALL parents should strive for when dealing with children with special needs. He's in "the box" and I don't know if we'll ever get him "out of the box"...we hope and pray and do what we feel is best for him, but who knows what the future holds--but that gives me hope--one day maybe he'll tell me what he's thinking and feeling and seeing...until that day, I'll continue to yearn to know what's going on inside his bright mind...inside the box.