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