(Please send comments to pastor_kurt@yahoo.com)
A few years back, I was on pastoral staff at a small area church. My wife and I were just making discoveries about our son’s special needs. We were only seeing the tip of the iceberg at the time. We had been very honest with our church family. For the most part, many were very supportive, though they couldn’t fully grasp the depth of bipolar disorder or Aspergers syndrome. Others were not as supportive. Our six year old son never really transitioned into the children’s class. He loved the regular nursery lady, and generally avoided a change in plans, including change in classroom. That’s somewhat typical of “Aspie” kids.
Years later, I was invited back to preach. Whenever this occurred, my wife and son normally didn’t join me. One particular time, they did, and my now nine year old headed right for the nursery to assume the position. It is there that he knew the toys, the lay out of the room, and best of all, the teacher, “Miss Mary”.
To his surprise, another lady from the church was in the nursery. Her granddaughter was about my son’s age and was upstairs in the 9 year old class. The change in teachers was not something anticipated. In fact many things seemed different from his memory of a few years ago.
Melt down in progress…warning, warning.
Frustration and confusion escalated in my son, as did the temper and intolerance of this young grandma. He was not acting the way a 9 year old should be. There was a frank exchange of differences of opinion between the two. The woman finally looked to my wife and exclaimed in front of the boy, ”He doesn’t belong here! He shouldn’t even be in the nursery!” Then she abruptly left. My son, however, took longer to settle down and was quite confused about the whole altercation. As parents, even parents of a special needs child, we honestly did not see the big issue. We were confused by an inflexible adult childishly debating and arguing with a nine year old with issues while the child reacted…well, childish too.
Many of us with special needs children have stories like this. Some experiences we get over and move on, while others are more difficult to forget or let go. Sometimes, while on our individual journeys, we encounter people who expect our children to assimilate into a neuro-typical world and behave as such… we know they can not do so. The results for our children and our family as a whole can be disastrous.
This whole idea of “unchurch” that God seems to be orchestrating is one attempt at filling a void that some of us feel in the area of not quite fitting in. Too often we feel the sting of rejection and confusion. Despite the intentions of others, whether good or bad, be assured that what church goers say and think, and what God says and thinks, are not always the same thing.
I came across a familiar passage in the Bible recently. Matthew chapter 19, Mark 10, and Luke 18 all tell the same story. Each offers a little twist to the story.
Mark 10:13-16 NIV People were bringing little children to Jesus to have Him touch them, but the disciples rebuked them.
When Jesus saw this, He was indignant. He said to them, “Let the little children come to Me, and do not hinder them, for the Kingdom of God belongs to such as these.
I tell you the truth, anyone who will not receive the Kingdom of God like a little child will never enter it”.
And He took the children in His arms, put His hands on them, and blessed them.
In our culture, this seems rather confusing. What’s the big deal? Why are people bringing children? Why are the disciples rebuking them? Why was Jesus so angry at the twelve?
First of all, it was customary on the day before the biggest Jewish holiday, Yom Kippur / Day of Atonement, that fathers would bring their children to the Temple or synagogue elders to be blessed and prayed over by them. Elders were recognized spiritual authorities in that religious culture. This would indicate that the passage in Mark 10 occurs in the fall at the time of Yom Kippur. It would seem that the heads of the households, the men, were bringing the children to Jesus whom many recognized as a Rabbi, teacher, prophet, or at least some sort of spiritual authority.
The disciples of Christ had apparently felt the Master couldn’t or shouldn’t be bothered with such mundane things. After all, in first century Palestine, children were one of the lowest on the social ladder… along with women, the sick and diseased, non Jews, and other outcasts. I can hear them thinking, ”Get these children away, can’t you see the Master is busy?!”
Jesus, however noticed this reaction, and He was furious. The word “indignant” is a very strong word in the original language. Furious may be a good comparison. So we see Jesus react to an injustice, make three statements, one of which is a teaching principle, then take three action steps. In doing all of this He places a new value system on children. He elevates them from the cultural outcast they were perceived to be, to a place of honor and recognition.
If I may put it another way, Jesus firmly commands the twelve, ”Hey guys, 1) give the children access to Me. 2) Don’t stop them from coming to see Me. (almost a redundant statement for emphasis) Why, you ask? In the Kingdom of Heaven it is the little children who are truly great.” That would be another way of saying the kingdom belongs to such as these.
Teaching principle: “I tell you the truth”, let Me put it to you this way, you will not be able to enter the Kingdom of heaven unless you enter it or to receive it or view spiritual truth the way a child would.
It seems this childhood principle is an important one. Is Jesus talking literally, as in moving back in time to become a child? Not likely since that would be impossible. Could it be childlike in attitude, maybe action? Let’s see, children are often seen as lowly; their opinions not taken very seriously. Especially our special needs children. They are also often dependant for even their basic needs. In their early state of innocence, they are usually very trusting. Of course, as growth and maturity occur naturally, lowliness, dependence and trust grow and mature as well. Jesus is speaking to adults, using children as an object lesson. He is calling us back to attitudes and actions of childlikeness. You and I should see ourselves as spiritually needy, lowly, our opinions in spiritual matters compared to God could be seen as simple and childlike. Children and adults of the Kingdom are to be dependant upon God for our most basic needs and should naturally be trusting toward our Provider.
One parallel passage in Luke 18:15 says, “People were also bringing babies to Jesus to have Him touch them.“ Talk about dependant! My favorite part of this passage is the three action steps taken by Jesus. I believe that despite the intentions of others, whether good or bad, what church goers say and think about special needs children, and what Jesus says and thinks, are not always the same thing. The response of Jesus and His new value system are a great example.
And He took the children in His arms, put His hands on them, and blessed them.
I picture Him smiling with children on His lap. This was something men did not do in public at the time. I picture Him enjoying their stories, their smiles, their very lives, as He spends individual time with each one, no matter how long that took. I can’t see Jesus pressed for time due to the long line waiting to see Him like Santa at the mall. Each person matters. Each child, even with bipolar, autism, Tourettes, sensory issues, is part of the new value system Jesus would put in place.
He then laid hands on them as a sign of affection, acceptance, then blessed them. Matthew 19:15 tells us “when He had placed His hands on them, He went on from there.” Let’s put this in context. Jesus was teaching, healing, and confronting the crowds everywhere He went. There are indications in the gospels that He was physically, emotionally, and probably mentally and spiritually exhausted from giving to those that need it 24/7. Can anyone out there relate? At some point, in the midst of ministering from region to region, He sees He can spend time with innocent, trusting, loving children. (I’m not convince every single child acted 100% lovable at the time) However, His disciples prevent the children from coming to Him. Once the interaction, teaching principle and respite are over, Jesus moves on from there. He goes back to work.
I’m not sure what your world is like, but I’m not handling one child, much less a group of them in the way that Jesus did. Honestly, at times I just don’t see a special needs child as a respite! I can’t recall a single instance where I told my wife, hey let him come to me, don’t hinder him. I’d love to spend more high maintenance energy with him after a long grueling day. I do love the time spent with my son, but it’s not always a picnic when I’m exhausted.
I am not accountable for the way others have treated my son. I have strong feelings about that, but I’m not accountable before God for their response. I am accountable, however, for my own attitude and actions. Have you discovered the new value system Jesus has placed on children and special needs children? It may be easiest to see the value in our own children sooner than the high value of other children.
Are you becoming like a little child before God with your needs and joys? How do you, your family, or even your special child(ren) handle a situation where others do not administer any value, show any patience, or demonstrate any love to your circumstances? I ask each of you for comments, and that we each “sharpen” and support each other. What works? What doesn’t?
Pastor Kurt
5/23/2007
5/13/2007
Mother's Day
(Please send comments to pastor_kurt@yahoo.com)
The Bipolar Child Newsletter
May 2007, Vol. 24
Janice Papolos and Demitri F. Papolos, M.D.
In Honor of Mothers and Fathers of Bipolar Children
In our book, and in almost every newsletter we write, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy.
But we've never composed a stand-alone list that lets others look at what the parents must grapple with and withstand--in all its stark and disturbing reality.
This list, sadly, cannot even be described as "exhaustive or complete," but as Mother's Day approaches, and Father's Day is just a calendar turn away, the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:
Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
Accept that they need help from a professional, but feel a stranglehold of fear.
Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.
Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.
Are set adrift in a house that has become a war zone.
Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid."
Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
Want the world to understand, but fear that the stigma will further isolate the child and their family.
Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."
____________________________________________________
It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives--until their children are stable--are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time.
And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.
Some people think of Mother's and Father's Day as Hallmark holidays; but we see them as an opportunity to celebrate these parents: their grit and their commitment, their love and their humanity....Parents who have never stopped trying to help their children--against seemingly overwhelming odds.
Please take good care of yourselves.
We send you our best,
Janice Papolos and Demitri F. Papolos, M.D.
The Bipolar Child Newsletter
May 2007, Vol. 24
Janice Papolos and Demitri F. Papolos, M.D.
In Honor of Mothers and Fathers of Bipolar Children
In our book, and in almost every newsletter we write, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy.
But we've never composed a stand-alone list that lets others look at what the parents must grapple with and withstand--in all its stark and disturbing reality.
This list, sadly, cannot even be described as "exhaustive or complete," but as Mother's Day approaches, and Father's Day is just a calendar turn away, the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:
Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
Accept that they need help from a professional, but feel a stranglehold of fear.
Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.
Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.
Are set adrift in a house that has become a war zone.
Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid."
Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
Want the world to understand, but fear that the stigma will further isolate the child and their family.
Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."
____________________________________________________
It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives--until their children are stable--are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time.
And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.
Some people think of Mother's and Father's Day as Hallmark holidays; but we see them as an opportunity to celebrate these parents: their grit and their commitment, their love and their humanity....Parents who have never stopped trying to help their children--against seemingly overwhelming odds.
Please take good care of yourselves.
We send you our best,
Janice Papolos and Demitri F. Papolos, M.D.
A Foreign Country
(Please send comments to pastor_kurt@yahoo.com)
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
"Holland Schmolland"
by Laura Kreuger Crawford
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 250. 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.
-- The End --
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a
disability - to try to help people who have not shared that unique
experience to understand it, to imagine how it would feel. It's like
this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
"Holland Schmolland"
by Laura Kreuger Crawford
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 250. 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.
-- The End --
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