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

Come Thou Fount of Every Blessing

This old hymn has been a real blessing to me lately:

Come, Thou Fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
Mount of Thy redeeming love.

Sorrowing I shall be in spirit,
Till released from flesh and sin,
Yet from what I do inherit,
Here Thy praises I’ll begin;
Here I raise my Ebenezer;
Here by Thy great help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.

Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood;
How His kindness yet pursues me
Mortal tongue can never tell,
Clothed in flesh, till death shall loose me
I cannot proclaim it well.

O to grace how great a debtor
Daily I’m constrained to be!
Let Thy goodness, like a fetter,
Bind my wandering heart to Thee.
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.

O that day when freed from sinning,
I shall see Thy lovely face;
Clothed then in blood washed linen
How I’ll sing Thy sovereign grace;
Come, my Lord, no longer tarry,
Take my ransomed soul away;
Send thine angels now to carry
Me to realms of endless day.

Ro­bert Ro­bin­son, 1758; ap­peared in his A Col­lect­ion of Hymns Used by the Church of Christ in Angel Al­ley, Bi­shop­gate, 1759.

You're Not Alone

I will be very honest and say that I have spent large portions of my life experiencing deep pain or engaging in behaviors that distracted me from or minimized my pain. Only in the last few years have I gathered the courage to just settle under waves of grief until they passed, and I want the world to know I have emerged! I remember toward the end of some heavy grieving having the sense that this pain was like a large, dark, and heavy cloak just draped over me everywhere I went. It could not be shaken and I wore it all day. Then one day, while envisioning and experiencing this cloak of sadness, I took a step back and saw that this cloak actually covered all of humanity. It is the burden of being human and we all had our portion to wear at particular times in our lives. Stepping back even farther, I shockingly realized that this same cloak draped over all of humanity was nothing more than the train of God's robe, and that He was actually wearing the cloak! We were draped only in the train of it, while He carried its greatest weight.

This morning driving home, after dropping the kids off at school, I suddenly became aware of something odd-- the absence of pain. I am driving in my car in absolute peace, enjoying the morning sun, thinking no negative thoughts, and shedding no tears. There were mornings I dragged myself out of bed under the weight of the cloak and took care of my children under the cloak. I know the depths of sorrow. I am keenly familiar with hurting, grief, and remorse. I lost my very self under that dark covering, and today, I just want to thank God I am alive.

I know I have readers all over the world, many who have awakened this morning beneath the cloak of pain. I know there are people around the globe who wonder how they can possibly go through one more day like this. I am certain some of these people are hurting because they are courageously facing down their demons and engaging in the long process of recovery. I still have days, of course, when I feel down, and I experience moments of sadness. I do not, however, feel the heavy burden of suffering any longer. The dark night finally passed, and it will pass for others too who just keep going forward. So, though I no longer wear the cloak of suffering, today I come beneath it with all of you who still wear it. You are not alone. I am strong enough now to come help you bear the weight of it today-- here, come let me hold this with you today. I am with you in spirit, acknowledging the weight of this thing you carry. I walk with you today. You can do this one more day.

Photo above found at:
http://idsoha.deviantart.com/art/Best-friends-41599864

Do You Believe in Magic?

There are people who carry way more than they should in this world. They carry the burdens of their children, their spouses, their bosses, foreign countries, alien life forms, and angels in heavenly places. There are some who even carry the burdens of God, and just how arrogant is that, if I might ask? And, yes, I can ask, as I will admit I was once one of those people. I still have moments when I am drawn into the black hole vacuum of some needy person who is carrying too much weight and needs a partner to shoulder it, a hero to come from the heavens and take away their pain. Somehow these types of people can convince us that we are capable of taking away all their pain, and it's just so flattering to believe that. I soon find myself thinking, "Well, if he/she thinks I can solve all these problems, then maybe I can! I can and I will!" I haven't fallen into that trap in awhile, until yesterday.

I have been counseling children and families for almost 10 years, and there is a subtype of parents I encounter-- the desperate parents. These parents are having great difficulty accepting that they have a child with any type of disability or illness. Understandably, the pain of this type of acceptance is very scary and crushing. I drift in and out of acceptance regarding my own children's disabilities, but I accept it or I go crazy. That's the only two options unfortunately. Nonetheless, there are parents who hold onto hope that someday some magical person will come along with magic wand in hand, tap the head of their child and, all ADHD will disappear. Autism will shrink to nothing or severe mental illness will turn to mist and vanish. This magical person must only appear and be willing to impart her divine wisdom and allow their child to sit in her most holy presence, and all will be well.

I am getting better at spotting these types of parents, because I am prone to buying into their grandiose plans for me and their child. One of the first telltale signs is that many of these parents actually say something like this,"We have been to so many doctors and I am just exhausted with this process. Come work your magic!" I usually try to burst that bubble right from the start with, "Well, I hate to tell you this but you're going to learn it about me eventually... I'm human, no magic, sorry." Usually they don't believe me the first few times and continue to try to force magic from me. When the magic persists on not "working," then I begin seeing anger. It often sounds like this, "What have you been doing with my child all this time? All I ever see you do is playing with them. How is that going to help them!? Look, I really need help here! This is not what I thought it was going to be. I need you to talk to her teacher, and could you please tell her case manager that I need those housing forms? I'm not even sure I like this doctor anymore, are you going to be talking to him soon?" Essentially, this parent just took the enormous burden of caring for a sick or special needs child, held it out to me and asked, "Are you going to take this crap off my shoulders or not?"

Be forewarned, if you take the bait (and I have), this is what will play out. You, the therapist (or friend, spouse, etc), will take over the role of shouldering this burden. You will begin making the phone calls, researching the internet, buying the books, emailing the doctor, calling meetings at school, and lecturing the child to get with the program. Therapy sessions turn into what Mom or Dad wants you working on rather than what the child brings to the table for the day. Child clients become defensive and shut down, whether passively or aggressively. Therapists begin to burn out, get angry with the child for not cooperating with the plan! Basically, I have taken the anger and denial from the parents and made it mine. In the meantime, you are not likely seeing much progress with the child with this type of approach. Thus, parents are getting angrier and applying even more pressure. Therapist starts working even harder, gets angrier. Less progress, parents apply more pressure, therapist wears out.

Oh,well... mistake spotted. Time for me to back up and go back to plain old humanity. It was kind of fun for awhile believing I had superhero powers. I almost thought I cured one this time, but no. I've seen good, healthy, slow and steady progress with a child. One more case of the humdrum, slow and laborious work, eating your therapeutic fruits and vegetables, and being only a small part of someone's lifetime of growth. That's just how we humans heal. I guess that's just how we therapists learn too. Drats.

Photo above found at: http://mehmeturgut.deviantart.com/art/pixie-s-magic-36077755

Crazy is an STD

One of the spiritual lessons I am in the midst of these days (and we are always in the midst of one, whether your recognize it or not) is better understanding my sexuality. My concept of sexuality has been corrupted by culture, childhood events, relationships, media of various forms, and much more. I'm definitely in the beginner classes, when it comes to understanding the magnitude of sexuality and how it encompasses our entire (human) being.

As God often does for me, He introduces a person or event into my life that becomes a perfect metaphor for what He's trying to teach me. I enjoy metaphor, use them often, and think in them often. Being our spiritual Daddy, He knows how we all learn best! A couple days ago our home computer became infected with a pervasive and pesky virus that eventually crashed the entire system. In researching this virus and how to clean it, I probably created even more devastation than was already there. I also had the honor of experiencing what I have learned in the computer world is called "the blue screen of death." When your computer gives you that blue screen screaming error... well, you're just toast. Yeah, I get that now. Thanks. This morning God dropped some insight into me like a pebble into a pond-- my sexuality is the core operating system for my entire life!

Our sexuality goes way beyond sex organs. Because I am admittedly still in the beginner classes here, I cannot rattle off for you the complete list of what falls under "sexuality," but I can tell you that you'll find much more than "genitalia" listed there. In fact, I'm beginning to realize that practically EVERYTHING about me falls under the category of my sexuality, and I am hard pressed to find what isn't listed there. My sexuality is my very self as a woman-- my creativity, my feelings and thoughts, my strengths and weaknesses, my emotional and spiritual energies, my gender identity and role on this planet as a woman. My sexuality is the very essence of everything else about me, the core operating system. God forbid it ever get infected with a virus. Been there, done that and it pretty much sucks.

I am no computer genius, but I know there are innermost programs operating on an unseen level that keep my computer healthy. These programs are the skeleton for every other operation I want to perform, kind of like the secret inner room of my hard drive. There is a secret inner room to my sexuality, where no one enters but God. If I allow my spouse, partner, friend, or any one else to go where only God can exist, I get infected. Then there is a middle room to my sexuality that is meant only for close intimate relationships. God permeates into this room as well and allows me to bring in my husband. This room is meant only for him and if I let someone else in, yes, I get infected. Just a side note, I am not talking about the kind of infection that requires a shot of penicillin! Even though the virus entered through this middle room, it worms its way into every area of my sexuality and every room becomes infected!

Then there are other outer rooms where it is good to allow safe people. It is vital to the health of my sexuality that I keep these outer rooms open, while also using good protection. I have to share the programs operating from the depths of my inner sexuality, because they are creative masterpieces from God and His gift to the world. To keep them to myself would just be a waste. But in that sharing, and in all moments of sharing and opening, I need good protection around me that I do not allow viruses to come in and infect the lush and fertile grounds of my sexuality/my encompassing self.

When we are infected in our sexuality, regardless of how the virus entered, it can manifest itself in a lot of dysfunctional patterns. We're most likely going to see it really wreaking havoc in our relationships. A healthy sexuality shares intimacy and honesty, but an infected system cannot perform this function. An infected sexuality also creates bad employees and bad bosses. We become selfish or conversely, a wide open door for any fool that wants to come in and pillage. We become neurotic, psychotic, codependent, lazy, workaholic, alcoholic, sexaholic, ragers, doormats and/or devoid of any self at all. Our thinking becomes illogical and distorted. We start to believe things about ourselves and the world that are so sick it then affects the way we behave. You see how a virus spreads and affects every area of our lives?

So now I'm wondering, what is good virus protection for sexuality and where can I get some? Well, naturally, foremost I guess that means keeping my innermost room healthy. That space for me and God needs to be clean, open to Him only, and visited regularly. He meets me there, I can go any time, and answers for every other operating problem are found there. I have to keep that room safely protected and stop bringing any Tom, Dick and Harry to come in there and impart their wisdom. I need to be mindful always of other infected people. Don't you know if you invite a sick person to come in and hang out for any extended period of time, you're probably gonna get sick too?! Duh, this is not rocket science! As I change and grow, I have to keep my protection updated. What protected me yesterday may not be sufficient today as I have grown into new areas. I am careful where I go, who I listen to, what I watch, see, or read. I take in all things through a protective lens. Yes, it is hard work, but it is self-love, and more than worth it.

So, as I am re-building my electronic life on a computer that has been entirely swept clean and re-set, I am reminded that re-setting a life is painful. There is protection against the sexually transmitted diseases that infect the human spirit, and these diseases can take a life just as assuredly as HIV or untreated syphilis. Having an infected body or computer is devastating, having an infected sexuality is devastation.

Photo above found at: http://lordike3.deviantart.com/art/You-Suck-Notice-99394886

The Red Poppy

The great thing
is not having
a mind. Feelings:
oh, I have those; they
govern me. I have
a lord in heaven
called the sun, and open
for him, showing him
the fire of my own heart, fire
like his presence.
What could such glory be
if not a heart? Oh my brothers and sisters,
were you like me once, long ago,
before you were human? Did you
permit yourselves
to open once, who would never
open again? Because in truth
I am speaking now
the way you do. I speak
because I am shattered.

by Louise Gluck
Photo above found at:
http://isnt-pretty.deviantart.com/art/Poppy-89769288