Wilderness

Do animals make a human cry
when their loved one staggers
fowled dragged down
the blue veined river

Does the female wail
miming the wolf of suffering
do lilies trumpet the pup
plucked for skin and skein

Do animals cry like humans
as I having lost you
yowled flagged
curled in a ball

This is how
we beat the icy field
shoeless and empty handed
hardly human at all

Negotiating a wilderness
we have yet to know
this is where time stops
and we have none to go

by Patti Smith
The Guardian, Saturday 2 December 2006

Patti Smith, Where Have you Been?

How has Patti Smith escaped me all these years? I suppose her brand of genius in song and poetry was well before my own generation, not to mention, I've never been a punk rock fan. But last night I watched a brilliant documentary on PBS, Patti Smith: Dream of Life. I enjoyed her so much, such a quirky and bold woman. Her writing is breathtaking and her performances so full of energy and truth. I found myself slightly confused yet completely captured by her gender-bending appearance-- the unimposing thin frame and wiry hair. She is a woman for all times, for all generations. Thank you, Ms. Smith, for your contribution to our world and thank you, PBS, for introducing this amazing woman to me. Great documentary, check it out at http://www.pbs.org/pov/pattismith/.

Little Girls & Co.

Just so you know
it is not actually you
I am missing but some
fantasy of a man I've carried
since sixth grade.
You just happened to
come along
during my production of this
particular drama
Prince Charming
Cinderella and
a Slipper,
you know the story. You
had nice eyes.
I thought you'd fit the part, so
now that it's over
a huge disaster
a real flop
not what I imagined at all,
I remember sometimes
moments you were not so bad, imagine
perhaps you'd make a better
Lancelot or
Romeo. No,
it's really best you are not employed with this company,
I'm looking at trying my hand at documentaries anyway.

Photo above found at:
http://romeosavesjuliet.deviantart.com/art/Where-s-my-glass-slipper-122045741

Beyonce is Not Naughty But I Am

Well, I have finally dropped the children off at school this morning and I couldn't be happier for some quiet around here! My five year-old son and I were the unprepared victims of the 9 year-old's Autism Rant. If you've never witnessed an Autism Rant, then be glad! When Hannah launches into one of these passionate long-winded speeches of social injustice, you could be in for an Academy worthy performance. These rants are loud, repetitive, filled with paranoid and delusional beliefs that the world is against her, and cannot be stopped. I have learned that any attempts to stop an Autism Rant are futile. At least in our household, it is best to provide no comments, point out no illogical beliefs or falsehoods, or even offer up an Amen. In fact, trying to intervene in any way, especially with threats of time-out, grounding, or spanking, only fuel the righteous indignation, and could possible turn an Autism Rant into an Autism Rage (very violent, someone gets hurt, not a pretty scene).

So, we've all learned to keep our mouths shut as best as possible, while Hannah stomps around the house like it's her pulpit. She really doesn't mind if you're actually listening or not. The Rant seems to be more for her own benefit, stemming from her intense need to put into words the injustices she has suffered, which this morning happened to be the fact that it was too cold for a skirt. This particular Rant on this morning was actually pretty passionate as it ventured off into the area of who is naughty and who should be on the naughty list. Apparently, I am very naughty and will be getting no presents this year. Bummer. I also learned from this impassioned soliloquy that there are leagues of naughty people at her school and in this family. Furthermore, in true Southern Baptist fashion, Hannah preached to us that you should NEVER put yourself on the naughty list, because that is rude!

Imagine my great relief when, after a 45 minute sermon about bad mommies, naughty lists, and the proper use of "temper fits," I finally have both children in the car and we're on the way to school. Popping two ear buds on her and some Beyonce seemed to soothe her anger somewhat. Beyonce always works for me too. Once Hannah had calmed down some, I thought this might be a good time to revisit some of the disturbing statements she had made during her sermon about the nature of Christmas. "Hannah, it's very important that we remember what Christmas is all about. Christmas is when we celebrate Jesus's birthday. I am so glad that Jesus was born, so now He comes to live in my heart and I never have to be afraid of dying. I'm going to live forever in heaven with Him, the God who made me." There is silence from her in the backseat, and I'm thinking she is turning this over in her mind. Perhaps these words are sinking in. "Having Jesus in my heart and the promise of living with Him forever is the greatest gift I could ever get. Don't ya think?"

She maintains her flat expression and replies to me with a tone that says she is not impressed, "Mom, that is not a good gift." She pops her ear buds back in and turns up All the Single Ladies. Okay, so I survived another Autism Rant, and it never escalated farther. I'll just be grateful for that and let God do the rest of the work on her!

Photo above found at:
http://jmarcdodsonjr.deviantart.com/art/Christmas-card-Santa-List-79211111

The Condiments of Marriage

Marriage is a very complex and tricky thing. We know how God intended for marriage to be when he created Adam and Eve, and we know that He knew all along that was going to be too hard. We cannot be married without God-- it's just too hard! I hear young people sharing with excitement their news, "I'm getting married! I just love him!". I just smile politely, bite my tongue, and know inwardly, "Yeah, Sister, just wait till he's not so cute anymore and you realize you actually have to WORK at living together."

I supported myself throughout my college years by waiting tables. At the end of every night, we servers cleaned our table sections, which included marrying the condiments. We would fill back to the top any ketchup, mustard, or salt and pepper shakers that had been used, so that all condiments were full for the next day's customers. A half-used ketchup bottle would be married with another half-used ketchup bottle to create something new for the next day. When two people get married they bring together everything they own and join it. They create a home from their joint furnishings and finances. They marry their talents, whether that be organization, patience, handyman, cook, or compassion. When everything that two people own physically, emotionally, and spiritually is married together, life should be easier for them and their potential for growth much greater than they could have as two singles. At least that's the ideal God had in mind. Actually getting there is pretty tough and doesn't magically happen right after you both say "I do."

When you go out to eat, you will readily find your most commonly used condiments right at your table. If marriage were the dining table, there are three main condiments that should always be married at that table to keep the two diners happy. These marriage condiments (the true life blood of marriages) are sex, money, and parenting. When one partner has more control than the other in any of these three areas, this couple is at high risk for an unsatisfactory relationship.

Sex-- both partners should always feel they have full ownership over their own bodies and sexuality and share it willingly when they want and in the ways they feel most comfortable. Any compromises are discussed and agreed upon by both parties. If one partner routinely gives in to the other, invalidating their own needs or feelings, then the condiment grows empty. You have to get married in your sex life. Actually, I tend to believe that when two people do not bring equally to the marriage emotionally, then the sex condiment gets drained pretty quickly.

Money-- both partners should always have complete access to and full knowledge of the money coming into and out of the household. What gets spent, where, and why are decisions made by the two partners who have married their finances and, thus, both have equal say in where the money goes. Often one person may write the checks, balance the account, etc. for simplicity's sake or because one person is more organized in this area. Even so, the married couple operates as partners and equals in the managing of their funds. There are no money secrets and no money dictators.

Parenting-- couples who join their parenting skills have reached an agreed upon plan of how disciplinary issues will be addressed, what rewards will be used and when, and especially how many children there will be, if any! Having and raising children is a joint operation, a business managed by two people who bring together their abilities and both parties are always kept fully informed of the goings on of the child business. When one person is solely responsible for parenting or the two partners are not in agreement on their parenting values and plans, this is a marriage headed for destruction!

You alone cannot supply everything a marriage needs. You cannot give your all, particularly in the areas of sex, money, and parenting, and believe that you will carry this so-called marriage on your own. There might be a piece of paper that says you are married legally, but when one person is in charge and keeps the other in the dark-- where is the joining? Is this really a marriage? If you are the one getting left in the dark or being left out of the partnering in any of these areas, it is your right to speak up. If you care anything at all about your marriage, you will insist to be made an equal partner in these areas, to be heard, and to be respected in these areas. Whether you've been married 15 minutes or 15 years, there is always room for more marrying. Bring what you have to the table and expect the same from your partner. Keeping the condiments of sex, money, and parenting equally married will make for happy couples!

Photo above found at:
http://fireinyourheartx.deviantart.com/art/salt-and-pepper-109914932

Holland Schmolland

In the vein of celebrating Good-Enough Moms, I'd like to re-print the wonderful article "Holland Schmolland" by Laura Kreuger Crawford, a must-read for all parents of special needs children:

Holland Schmolland

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."
Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 150. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

Mommy Guilt

If you are a mother, you are likely familiar with the unique-to-us feeling of Mommy Guilt. I believe women in our Western culture are prone to guilt already, then the responsibilities of Mommyhood come along and pack on more pressure. There is an intense push in our culture for mothers to be perfect in all we do. We must work 40+ hours per week on our jobs, giving 100% there or risk being told, "you're not being a team player." Then we go home exhausted and have our precious babies excited to see us and be with us, yet they get the day's leftovers. We put on the smiles, forge ahead through the fatigue, and clock in for our second job of Mom.

Because I have never parented a "typically developing" child, I cannot really know if my Mommy Guilt is more intense than other mothers. I do, however, spend lots of time with other mothers of special needs children and share specific guilt behaviors with them. As mothers of special needs children, we are prone to stay up way too late researching, spend more time than is necessary calling and visiting doctors, worry excessively about our children's futures, and feel intense guilt at the end of every night when our children still have said disorder. There's always the nagging feeling at the end of the day of did I do enough today for my child? Because if I didn't do enough, I am convinced my child will end up with a miserable life and it will be my fault. We will take out a second mortgage on our home to pay for specialists, schedule round-the-clock therapists and doctors, buy every supplement, try whatever medications the doctor recommends... we will do anything! If we don't do EVERY POSSIBLE THING to "cure" our children, then we are being a BAD mom. I just have one question-- Who the hell sold us this load of garbage?

I'm learning to be a good-enough Mom. My children consistently receive from me my support, love, nurturing, attention, guidance, and discipline. Because of this, I can rest in knowing there is room for mistakes. I will make mistakes as a mother, sometimes being too harsh when I should have shown mercy. I may be too lenient when really my child needed a stern consequence. I mess up and they grow, no, they THRIVE anyway, because they get enough. Having a mother who carries a sense of peace and confidence is just as valuable to a child as a mother who works tirelessly... maybe even more so. Children are tough and resilient. They can survive us despite our parental mistakes. If you don't believe me, just look at yourself. You survived your Mom, didn't you?

Photo above found at:
http://theusedafithrone.deviantart.com/art/The-Virgin-30321810