Welcome to Holland (Written by Emily Perl Kingsley)

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. 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, 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.”…………

My son and I lived alone for the first twelve years of his life.  I had thrown my husband out before my son was born because he was abusive, and I didn’t want my son to grow up in that environment.  My son does not know his father, and I have never asked for nor received a penny of child support.  We lived a quiet life.  There was no parade of men in and out of the house.  We had basic cable, but we rarely watched television other than EWTN and PBS.  We lived in a small town where we walked to church, to school, and to work.  We attended Mass regularly and prayed together.  There were times when we struggled financially, but I was proud of my ability to support us, and I paid all my bills on time.

My son was diagnosed at a relatively early age with an autism spectrum disorder.  When he started speaking clearly at three months old (his first word was “Mommy”), I thought he was brilliant.  When he was obsessed with spinning objects and started saying the word “fan” 1000+ times a day (I tracked it), I thought he had OCD.  When his pediatrician mentioned autism, I thought it couldn’t be possible, because aren’t autistic kids supposed to sit in the corner and bang their heads against the wall?  I’m ashamed of how ignorant I was.  He was enrolled in a small Catholic elementary school, and we were blessed to have teachers and staff who, with the notable exception of his fifth grade teacher, were understanding and supportive of him.  They jumped through hoops to help him be successful, and I will be forever grateful to the world’s kindest principal.

He attended social skills training and received occupational therapy in an after school program in an autism treatment center. Slowly his social skills and self-control improved, and the phone calls from irate parents and concerned school staff dissipated.  My son became an honor roll student, a cub scout, an altar boy, a basketball and a soccer player, and ran with a cross country team.  He was deeply religious and had a strong moral compass.  He learned to look people in the eye and smile, and he became a strikingly handsome young man.

When my son was in fourth grade, I met my future husband.  I knew that he and my son didn’t exactly hit it off, but I had blind faith that I was meant to be with this man and that somehow everything would work out.

I was an idiot.  My husband completely and utterly lacks the patience, understanding, and insight that raising a teenage boy with Asperger’s requires.  There was constant conflict between the two of them, mostly because of my husband’s notions of what my son should be doing and how I should be parenting him.  My son struggled through seventh and eighth grades, but with lots of support from his school, he was able to graduate with acceptable grades.

In ninth grade, my son entered a public high school, and his grades dropped without the structure and support of the Catholic school. A meeting was called, and a 504 plan for some accommodations was put in place for him.  He struggled through the year and managed to pass, but his grades were not high enough for him to be able to participate in basketball, soccer, or cross country.

Summer came.  My son was supposed to be working on our farm as part of his agricultural experience for school.  It completely unraveled by the end of the first week….my husband and his second oldest son screaming at him in the milking parlor….my son crying, depressed, feeling worthless…The tension was unbearable.

He returned to school in the fall and concurrently stopped eating properly.  At 6’3″ he weighs 150 pounds; he looks like a skeleton with skin stretched over his frame.  I beg him to eat, but he says his stomach hurts.  His grades are plummeting, so a more restrictive 504 plan is put in place at school.  He starts growing his hair longer and hiding his face.  He looks sad and withdrawn and hides in his room most of the time.  He’s indignant when I ask him if he’s using drugs, even though I know he would never do such a thing.

By Thanksgiving he has a girlfriend.  I give him an iPod for Christmas which makes it easier for him to talk to her.  I’m starting to over hear conversions where he’s chatting, happy and laughing, and I smile thinking of how more and more he seems like a neuro-typical kid.  But I’m starting to see alarming mood swings.  One night he is screaming, crying, destructive, and terrified; he admits he is suicidal.  I sleep in the spare bed in his room that night, and in the morning I arrange for counseling for him.

There continues to be ups and downs in school and in his relationship with his girlfriend.  My husband badgers him constantly about being lazy and not doing his chores.  He is now failing multiple subjects at school, except for his honors geometry class.

Then on a Friday afternoon he sends me a text message with a veiled suicide threat.  I leave work and drive him to the ER. He admits that he planned to stab himself in the chest.  They take away his clothes, his cell phone, my purse and cell phones, and put him in a room with nothing in it but a bed and metal plates covering the electrical outlets.  He’s terrified and doesn’t want to stay there.  He convinces the crisis nurse that he is okay, and they discharge him.

But he’s not okay.  His relationship with his girlfriend has soured, and he is worse than ever.  I call his pediatrician to make an appointment for him to be evaluated for medication on the advice of his counselor; after I explain to them that my son has suicidal ideation, they offer him an appointment in six weeks.  I call five other pediatricians and doctors trying to get him in sooner, and no one will take a new patient.  Finally, a psychiatrist in another county agrees to see him in seven days.

At the psychiatrist’s office, she speaks to my son alone first.  When I speak to her alone, she tells me that he needs a higher level of care and needs to be hospitalized.  I agree to take him to the ER at the children’s hospital.  We discuss all the stressors in his life:  my husband, school, girlfriend troubles.  She asks me why I stay with my husband….

On the drive to the ER, my son is begging me not to take him.  We are both in tears.  I try to reassure him that it’s a children’s hospital and will be nicer.  When we arrive, they take away his clothes and belongings and lock up my purse.  We sit in a hallway waiting for a room in the crisis unit.  He finally gets a room, and a social worker speaks with us.  He’s in luck because there’s a bed in an inpatient behavioral unit across the street.  We go back to the room and wait.  After a couple of hours, I ask the charge nurse how much longer it will be before he’s transferred.  She apologizes and tells me that the facility where they had a bed will not take our insurance. She names a couple of facilities that do take it, but theydon’t have any beds.  They will call around in the morning….

I spend my first of four nights sleeping in a recliner in a room in the crisis unit of the ER.  In the middle of the night, they need to rearrange rooms, and he gets moved.  There are three security guards patrolling the corridor for fourteen kids.  The lights are on all night long, and none of the staff bothers to lower their voices.  We pray a rosary to try to sleep.

In the morning, I ask if there’s a room, and I’m told not yet, but they’ll check again in the afternoon, etc.  We pray the entire rosary that night:  20 decades, 203 Hail Marys, 21 Our Fathers, 21 Glory Be’s, and 20 Fatima prayers.

The next day is Saturday, and there is still no bed anywhere.  I know that there is not likely to be a bed opening up on a Sunday.  I have to leave to take a shower and change my clothes.  He begs me to stay, and I leave in tears.  The hospital is an hour from my home.  When I return three hours later, he is lying in bed with his eyes squeezed shut, praying the rosary.

Another long night and another day in the ER.  A child is screaming all night long that he wants to go home.  Finally on Sunday morning they start my son on an antidepressant, the only treatment he has received yet.

The fifth day they locate a bed for him in another state.  It’s a two hour ambulance ride, and I follow in the Volvo.  We have to go through another ER and then to another crisis unit where we are interviewed by more social workers.  Finally at 10 PM he gets a room in the adolescent psychiatric unit.  I can tell he’s terrified, and he hugs me for too long.  I weep all the way home and get in around midnight.

I have missed three days at work and drive in the next day.  The hospital is miraculously only 20 minutes from my job, and visiting hours are in the evening from 6 to 8 PM.  I arrive and find him smiling, relaxed, and acting like his old self.  He’s been on antidepressants for only three days, and already it’s helped him.  Suddenly I start to see the light at the end of the tunnel, and I realize that I will have him home soon.

The day before he is discharged, I have another long interview with a social worker and a psychiatrist.  Is it true that your husband is verbally abusive to him? Yes. Would your husband consider going to family therapy?  No. They make follow-up appointments for him with a psychiatrist and his counselor.  I have a meeting at his school in which they offer tutoring to help him make up all the work that he has missed.

And then he’s home again, with the mother who kicked out her first husband because he was abusive, and who is now with a second husband who is pathetically incapable of being decent to my son.

His girlfriend breaks up with him the day after he gets home.  He is still up and down, but he doesn’t feel like killing himself.  I try to offer him advice and explain that no one should control how he feels, but he is silent.  Then I read a paragraph to him about acceptance from page 449 of the 3rd edition of Alcoholic Anonymous, and somehow it strikes a chord in him:

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing or situation — some fact of my life — unacceptable to me, and I can find no serenity until I accept that person, place, thing or situation as being exactly the way it is supposed to be at this moment.

Nothing, absolutely nothing happens in God’s world by mistake. Until I could accept my alcoholism, I could not stay sober; unless I accept life completely on life’s terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes.

Why don’t I leave?  That’s what the psychiatrist had asked me point blank.  The biggest reason is because moving is a pain in the ass.  The second reason is that my husband is not the only stressor in my son’s life, and right now the stress of moving would be greater than the stress of staying.  My son and I did leave two years ago for a couple of months.  One thing he learned from the experience was that leaving didn’t fix everything.  It was stressful to be so unsettled and to have all our possessions in limbo.

That doesn’t mean that I won;t change my mind tomorrow, next week, or next month as I frequently do.  I thought I was the mother who would do anything to protect her son including walking away from an abusive marriage.  I found out that I’m the mother that spends her time trying to smooth over the damage, and that’s the hell that I will live with every day.