Why did God made me autism?

I was sitting in bed, browsing the internet, minding my own business, when my 14 and 11 year old daughters entered the room.  My oldest had a look of “help!” on her face.  They walked over and sat on the bed and my oldest said to her sister, “Bekah, ask Mommy what you were just asking me.”  Bekah looked a little timid, which is unusual for her, then asked,

“Mommy, why did God made me autism?” 

(This is an exact quote.  One of her many issues is that she has problems with verb tenses and sentence structure.)  I’m glad I was in bed and not standing up because I think I might have fallen over.  We had the “autism talk” with her a few months ago, and while it’s come up here and there in passing, she has not approached near this depth of thought about it, at least verbally.  I have had years to work out my own beliefs about God causing things and have even written a bit about it here, but putting all my thoughts and beliefs in words that would make sense to her left me momentarily speechless.  Yet there she was, looking at me, waiting for an answer – one of those lovely terrifying parental moments.  I took a big breath then dived in.

Here’s how it went – paraphrased of course – – –

Me:  Honey, God didn’t give you autism.  Sometimes things just happen.     B:  How come?     Me:  Well, every one of us is different right?  Some of us have brown hair, some people have blue eyes, some people are tall and some are short.  Sometimes people have special challenges too.  Sometimes a person might need a wheelchair because their legs don’t work right, or remember that girl in your dance class that only had one hand?  I know that having autism can be hard sometimes, but God didn’t give it to you, God helps you so you can be strong and work hard and be the wonderful girl you are!

B:  Did I get it in your belly?     Me:  I don’t know.  Some very smart doctors think maybe autism starts in the mommy’s belly, other smart doctors think it happens after you’re born.     B:  Oh.  Did my friends get autism in their mommy’s bellies?     Me:  We don’t know about them either.  You know there are THOUSANDS of kids and grown-ups with autism all over the world and the doctors don’t know for sure if it starts in the mommy’s bellies or happens after they’re born.  It’s the same with all those people as it is with you.

B:  Do the kids at (the other program site where they have classes for more challenged “lower functioning” kids) have autism too?     Me:  Yep.  There are all different ways people have autism.  You know there’s lots of kids at (the other site) who don’t talk right?     B:  Yes.     Me:  Well, some people with autism have a really hard time talking, and some kids like you talk really well!  But you took a long time to talk and had to work really hard, and we’re so proud of you!     B:  Yeah!

She seemed satisfied at that point and bounced away happily to play while my oldest stared at me with a look of “I can’t believe what just happened.”  She got up slowly and left the room too – then I breathed a HUGE sigh of relief that it was over.

I asked my daughter later what made her think of that original question, “Why did God made me autism?”  And she casually replied, “I don’t know.”  She has been asking more questions about God lately, but putting the two together as a “cause and effect” was a big leap.  There’s definitely a lot going on in that beautiful brain of hers.

You may completely disagree with the answer I gave my daughter about her autism.  It may give you comfort to think that God is in control of the details of our everyday lives.  But that thought has never comforted me.  For me that would make God a dispenser of pain and suffering.  I believe that God is THE loving presence who gives us strength to persevere,  carries us through our pains, comforts us in the midst of our suffering and gives us hope that we are more than the things that challenge us.

God heals our ills, God doesn’t cause them.

my autistic theologian

Conversations with my 11 year old daughter who has autism are very concrete.  Mostly simple questions and answers.  It gets really complicated for everyone when she asks questions that DON’T have simple answers.

For example, she recently asked, “Mommy, where is heaven?  Is it up in the clouds?”  I knew if I said no, (because I believe heaven is a place that exists apart from the earth as we know it), then I’d enter into a conversation that would leave her confused and me frustrated.  So I told her that I thought it was past the clouds, hoping that would be good enough.  It wasn’t.  Her follow up was, “So it’s in space.”  Um, no, not that either.  Wanting to avoid the confusion and frustration I took the easy way out and I said, “Well, I’m not sure exactly because I’ve never been there.”  That was ok with her.  Sometimes it’s just better, and in this case more honest, to say “I don’t know.”

I had the same interesting balancing act when she asked where Jesus was.  She finds it impossible to understand how Jesus can be in heaven, yet in each of our hearts at the same time.  For her it’s easier to comprehend a Jesus who moves around a lot, and very quickly – jumping between heaven and the hearts of believers.  Actually it’s amazing that she understands Jesus being in our hearts.  The way I explained it to her is that it’s like when she remembers people she loves who died – her grandmother and grandfather specifically.  When she remembers them, they’re in her heart – so when she remembers Jesus’ words or story, that’s when HE is in her heart – and she gets that (I’m pretty sure).

She’s known for a while that not everyone is Christian – we have a few Jewish friends and she has classmates who are Jewish, so she knows that some people worship at Temple (or Synagogue – a word she knows but cannot pronounce!), and some worship at Church.  We have yet to discuss other faiths since they’re not in her experience, and we learned a long time ago to only answer the questions that are asked.  We cross bridges when we get to them, not before.

Now, thanks to some of our ecumenical associations,  she’s starting to understand that not everyone is Lutheran, although we haven’t gotten into details.  More specifically her new area of fascination involves the cooperative worship my husband’s congregation had during Holy Week with the local Presbyterian Church.  It’s taken her a few weeks to process some of this because Holy Week was back in April, but she’s been asking LOTS of questions the past few days.  Here’s a sample:

“Mommy, did Pastor Fran (the Presbyterian pastor) go to pastor school?”  (pastor school is how we’ve explained seminary to her)

“Mommy, does Pastor Fran have Sunday school at her church?

I’ve been working REALLY hard with her on pronouncing “Presbyterian” and she’s getting better at it.  When she first started saying it, it sounded more like “predaterian” (as in predator, not that she knows what THAT means, but I was still adamant to “fix” it).  I didn’t want it staying in her head that way!

“Mommy, does Pastor Fran and Presbyterians have big meetings like Lutherans?”  (meaning district-wide assemblies/conventions)

“Mommy, is everyone at the Presbyterian Church Presbyterian?   (may seem like a “duh” question for some, but not for her)  Then,

“Mommy, is everyone at our church Lutheran?”  (another “duh” question, but not for her)

The tough part is going to come when she asks what the differences are between Lutherans and Presbyterians (and Roman Catholics and Episcopalians, and Methodists, and Reformed, and Baptists etc…).  The answers will all depend on how she asks the questions I suppose.  We always have to start from there.  It ALWAYS starts from there.

I love that she is so curious about faith and the Church.  I love that she loves worship and sees our congregation as a natural part of her life.  I love that on Sundays we MUST go to church, and I love that she is adamant that if we’re going to church then she MUST wear a dress.  I love that she’s becoming a budding theologian!  Answering her questions is a challenge for sure, but the more I go about teaching her, the more I learn myself.

We Go Together

My autistic daughter is in a self-contained special education classroom.  However, there are a few activities where she joins the “typical” kids, and that’s called “inclusion.”  With an aide she participates in library, art and music.  Music is undoubtedly her favorite.  She is in the fifth grade chorus and has gone from the little kid who had to be pulled off the stage screaming in fear to the eleven year old who sings with gusto and does whatever hand motions the chorus director asks.

She is now practicing for the spring concert.  She is singing in her room, in the family room, and even in the shower.  And the song she’s practicing that is getting to me the most is “We Go Together” from the Broadway musical and movie “Grease.”  I have my issues with the story of a girl who feels the need to change herself for a man, but as an old Olivia Newton-John fan I can’t help but like the movie.  At first I just thought it was cute that they were singing this song.  But then I kept hearing her sing over and over, “We go together… together forever…” and thought of the title the song, and the significance of my daughter singing it with her typical peers.

Alright, I know I’m reading too much into it – I know it’s a simple song about high school graduation – but I can’t help myself.  As the mother of an autistic child I have felt A LOT of pain over my daughter’s inability to belong (be together) with her typical peers and navigate academia and social situations.  Her, along with her typical peers, singing “We Go Together” speaks volumes about our common humanity, responsibility to each other, and belonging (something which almost every autistic parent hopes for for their child).  It also speaks to our Christian faith and that, to borrow from Genesis as well as from Jesus in Matt. 25, we ARE our brothers’ keepers.

My daughter “goes together” with the whole 5th grade chorus and they “go together” with her.  We’re ALL in this mess called life “together.”  They will stand before the audience and proclaim on a level they don’t even understand that this autistic girl goes with them, along with the other autistic children from her class in the chorus, along with the boy with the hearing aid, the girl who speaks little English, the girl in the wheelchair, and the boy who is struggling with his ADHD, the kids going through messy divorces, the child whose dad is fighting cancer, the children who are suffering abuse.  In our happiness and in our sadness; in our wholeness and our brokenness, WE GO TOGETHER.  We are in communion with one another, all loved equally by God who created us, each of us in our own pain and joy, most of which is known only to God.  TOGETHER FOREVER.

My daughter and the rest of the 5th grade chorus do not see the weight I have put on to what should be a simple, fun song.  But for me it’s there now and I can’t “unsee” it.  You and I, we go together.  We belong to each other.  It’s a profound and beautiful thing.  And when I see her singing it with that wonderful group of beautiful children, I’m going to need a few tissues…

The Autism Wars

Today, April 2nd, is World Autism Awareness Day.

On this day (and every day) I refuse to get drawn into the wars between those who search for a cure, and those who despise the search for a cure.  I refuse to get drawn into the wars between those who would desperately want to “fix” their children, and those who wouldn’t want to change a thing.

Here’s how I see it.  Basically the “cure” and “no cure” folks fall into two camps, and what it boils down to is the level of severity of the autism they experience.

If my child is mainstreamed completely, or mainstreamed with a classroom aide, if they are able to keep up academically with their “typical” peers, if I have no doubts about their ability to function one day as an independent, self-sufficient adult, if my child is happy and secure in themselves – then I wouldn’t want anybody telling me I had to “fix” my child.  I would be angry with those who viewed my child as somehow “not good enough” or “broken.”  I’d be angry with those who highlighted my child’s disabilities and imperfections instead of how amazing and beautiful they are.  And I’d be right.

However…

If my child is a non-verbal teenager who can’t tell me when they’re sick or hurt, if my teenage child is still in diapers, if I live in constant fear of my child’s wandering, if my child will NEVER be mainstreamed in any way, if my child’s IQ falls in the “poor” range, if my child regularly beats their head against the wall, or sometimes even beats ME, if I wonder despite all my hard work and legal planning for the future what will become of my child when I’m no longer around, if I get the sense that my child is sad, depressed and overwhelmed with LIFE – then I would fight till my last breath to find a cure that would bring my child out of the darkness in which they live.  I would use all the energy in my being to raise funds for research so that this doesn’t need to happen to other children.  I would be angry with those who said no cure was needed.  I would feel left out by those who described my child’s condition in life as “beautiful,” when all I feel is tired and scared.

Both of these scenarios are autism.  I personally see both in my own community.

What I don’t understand is why the two “camps” are constantly AT each other.  I am thrilled for those with autism who are independent, capable of interacting joyfully with their environment and are able to celebrate their differences.  And I truly feel for those who struggle with autism’s serious challenges and REAL fears every day.

Why can’t we support research for a cure for those who are severely disabled and celebrate the successes of those able to overcome autism’s challenges at the same time?  Why can’t we support research AND funding for services at the same time and also recognize that some children are fine just the way they are?

Why do we FIGHT against each other when our better energy could be spent SUPPORTING one another?

There is a phrase, “When you’ve met one person with autism, you’ve met ONE person with autism.”  It’s true.  So why must we in the autism community feel the need to say “you’re with us or against us?”  Why don’t we use the same “spectrum” our kids are under, and allow OURSELVES the same kind of “spectrum” in how we respond to autism?

I refuse to be drawn into the wars.  I’ve said this before so you know where I’m coming from – I love my daughter and I would take away her autism if I could.  But I also respect you if you love your child and joyfully celebrate the autism that is theirs.  Don’t judge me, and I won’t judge you – let’s just love our kids – and on this World Autism Awareness Day try to make the world a kinder, more accepting place for us all.

Triennial Evaluations

In the United States every child who is classified “special needs” is entitled to new evaluations every three years.  My middle child (with autism) just had hers done this past month.  Every time this comes up I’m hopeful and fearful at the same time.  Hopeful that she will have gained some ground on her peers, fearful that she has not.  When the big envelope comes in the mail with the reports I always have to catch my breath before opening, and make sure there’s a tissue box close by.

How many evaluations your child receives depends on what their issues are.  My daughter gets three: educational, speech, psychological (as well as a medical evaluation from a developmental pediatrician which we haven’t had done yet because her appointment isn’t until May).  All these evaluations are done at the expense of the school district – we pay nothing out of pocket.

For the most part I have never learned anything new from reading ANY of the evaluations she’s ever had.  And really this is the way it should be.  I know my daughter.  She attends an excellent school and I have regular detailed communication with her teacher, so I shouldn’t get any surprises.  What is always so painful about reading these evaluations isn’t the new information gleaned, but the words in black and white.  The evaluations are conducted by trained professionals, who because they DON’T know her, are able to be more objective about her performance.  Reading them describe her serious deficits in official jargon feels like a punch in the gut.  And with this round of evaluations, it is becoming real for me that for as hard as she is working, she is actually falling farther behind her peers.  The older she gets, the more pronounced her autism appears.

I’m still trying to bounce back from the hit I felt when the reports came in the mail last week.  Here are some of the pieces that have been the most disturbing and painful:

from the educational evaluation summary –

“displayed below average ability in oral language, total reading, basic reading, reading comprehension and fluency, and written expression.”  “scored in the low range in mathematics and total achievement… scored in the very low range on math fluency.”

“maintained significant weakness in the areas of oral language, reading and reading comprehension, mathematics, math fluency, and written expression.”

from the speech evaluation summary –

“presents with a receptive and expressive language disorder characterized by below average auditory comprehension, semantics and syntax… also presents with below average problem solving and reasoning skills.  Informal observation during testing indicates that … has difficulty expressing her thoughts completely as a result of below average vocabulary or impaired expressive language.”

and from the psychological evaluation summary –

on the WISC-IV… “overall performance is classified in the ‘Extremely Low’ range of intellectual ability. ”

Verbal Comprehension – “falls within the ‘Borderline’ range.”

Perceptual Reasoning Index, Working Memory Index and Processing Speed Index… “All of these scores fall in the ‘Extremely Low’ range.”

“her knowledge of vocabulary words is very poor and her practical judgment, common sense, and the ability to understand and adapt to social customs is also very poorly developed as compared to others her age.”

“Within the perceptual reasoning area… (her) spatial problem-solving and manipulative abilities are poorly developed.  Abstract reasoning and visual information processing skills are also very poorly developed.  In addition, her ability to recognize the common features of nonverbal concepts is a weakness.”

“In the area of working memory… (her) short-term memory, sequencing skills, and ability to engage in mental manipulation of auditory information presented to her are very poorly developed as compared to others her age.”

“In the area of Processing Speed…(her) visual-motor coordination, visual scanning ability, and processing speed are very poorly developed as compared to others her age.”

Reading the “black and white” of it has been crushing.  I find my grief over her autism comes in waves – I ride the wave fine for a while, then some “thing” will happen that brings the wave crashing down on me, and the pain is overwhelming.  These evaluations are always a “thing” for me.

I know that she is much “higher” functioning than some children with autism.  I “get” that the situation could be worse, but right now, telling myself that hasn’t been helpful.  Because right now a wave of grief has swallowed me up and has me twisting and turning under the water, craving breath.  I know the air will come, but right now, feeling grateful is out of my reach.  Right now I’m just feeling sad for the present and fearful for the future that “could have been.”

I wish I could end this post with some quaint religious platitude, but the only thing I can preach to myself, that feels completely true, is that I am not alone.  God is with me in the wave, under the water, and God will give me breath.  Being a person of faith doesn’t mean we won’t suffer, it just means that we don’t suffer alone.

a half-day lunch

This post isn’t overtly spiritual or religious, but…

Every other month on a Wednesday my autistic daughter has a half-day of school.  The purpose of this half-day is for the staff to have in-service training, or continuing education.  I think it’s fantastic that the program in which she’s involved believes that staying up-to-date on education techniques and awareness are so important.  But at the same time I hate those half-days.  It means time alone with my daughter, which takes away from my own alone time, but also figures for awkward silences whatever we decide to do together.

One of things she always wants to do on these half-days is go out to lunch.  Until recently she was happy with McDonald’s drive thru, but now she wants a sit-down restaurant.  I didn’t really want to take her, because I didn’t feel like staring at my food while she woofed down hers (if you’re unfamiliar with the term “woofing down” it means eating really quickly).  Also, she’s awkward in conversation especially one-on-one,  is clumsy with her utensils and doesn’t always remember to chew with her mouth closed, so the idea of having lunch, even in a casual diner establishment made me nervous.

It’s not that I’m embarrassed BY my daughter, but sometimes I’m embarrassed FOR her.  She carries herself in a way that you may not notice initially that something is different about her.  So a person watching her eat might just think she’s a slob, instead of a girl doing the best she can to navigate her food onto her fork, or who put too much food on her spoon and instead of gently tipping some back to the plate shoves the whole thing into her mouth. I don’t want people to think, “what’s her problem,” when they see me helping my eleven year old with the knife as we try to get the last pieces of mac & cheese onto her fork.  I wish there was some way I could put a sign above us saying, “She’s got issues, she’s doing the best she can,” instead of people thinking she’s weird.  Or maybe no one notices at all, and it’s all in my head – me amplifying my own issues with her disability.

But she wants to go to lunch, and so we go.  The conversation is strained.  She stares into space and I ask her what she’s thinking about and she says, “nothing.”  I try to pull out information about her day, but I mostly get two or three word answers.  Thank goodness our food comes quickly.  Now at least I can focus on eating and helping her eat.  She needs several reminders to chew with her mouth closed and not to put too much food on her fork, not to lean so far over the food that her hair gets in it, to bring the fork to her mouth and not her mouth to the edge of the plate etc… and that takes up a lot of our lunch conversation.  But we had the silences too.  And then I had a revelation.

The silences were awkward for ME, not for her.

She was perfectly fine eating her food.  It was my expectations of the social rules about eating out that were bothering me – making small talk over food – socializing.  It’s been ingrained in me for as long as I can remember.  And I’ve hated it for as long as I can remember.  Lord I hate small talk.  I so hate it, that when I’m forced into a situation that requires it I often over-compensate, talking too much.  But with my daughter I realized I could actually relax and just eat my food, as she was happy just eating hers.

And the silence?  It was actually a beautiful gift.  Because I spent some time just watching her – looking at this beautiful girl of mine.  I looked at her eyes, her mouth, her chin, how wonderfully uncomplicated she is – I drank her in.  She is growing up so fast.  She has so many challenges and I fear them, but she has come so far and worked so hard, and I’m so proud.  Even after eleven years I’m still learning how to be with her.  Today I was thankful for the lesson that’s it’s ok to have a quiet lunch – that I don’t have to stress us both out trying to force conversation.  And in that silence I felt more connected to her than I have in quite a while.

So while this post isn’t overtly religious or spiritual, it speaks to the deeper issue of finding blessing even in the mundane.  The Holy One helping a tired parent see the blessing that is their child – seeing the holy IN that child, and not needing to “fill” silence with noise.

“God doesn’t give us…”

*originally written January 8, 2014

When people find out you have some kind of visible “sad thing” in your life, they often search for something encouraging or comforting to say.  They are well-meaning and sincere, but sometimes what they say isn’t helpful at all.  For me, my “visible thing” is my daughter’s autism.  Autism is a huge stressor on me and my family.

And one of the statements I’ve heard, that is meant to be comforting, but is actually the OPPOSITE is this:

“God doesn’t give us anything we can’t handle.”

I want to scream when I hear this.  But since I know it comes from a loving, perhaps even desperate, attempt to “do” or “say” something to make me feel better, I usually just accept the sentiment, but dismiss the words.  Now, if you have ever said that, I forgive you.  But let me put it out there for the world why that statement is so UNhelpful.  I’m speaking now as a pastor and as an autism parent – but also as a person who has been through a number of things in her life, and as the mother of a teenage girl (this last descriptor is a joke, well, kind of).

1)  When we say, “God DOESN’T give us” that also means that “God DOES give us.”  So, God didn’t give my daughter autism, but what about the family across the street who has a child with Down’s Syndrome?  Did God give them that?  If we say that God doesn’t give us certain things,  it means that God does give us other things.  Does God only give good things?  If God only gives us good things, then where do the bad things come from?  Satan?  So, using this logic, if a person has cancer, either God gave them cancer or the devil did.  What a choice.  It either assumes that I’ve been taken over by evil or that God thinks cancer is cool.

2)  “anything we can’t handle.”  This part of the statement assumes that God did indeed GIVE us the situation.  God doesn’t give us anything we can’t handle.  This means that God gave it to us knowing that we’d be able to persevere.  There are two things REALLY wrong with this:

a.  God becomes an agent of pain and suffering, not grace.  And that is not a God I can believe in.  The God I know in Jesus promises to help us withstand pain and suffering, NOT cause it.  God gave my daughter autism because God knew I could handle it?  No thank you.

b.  This statement also assumes we can “handle” it.  This statement doesn’t give us any room to break down and need help.  This statement does not encourage us when we feel like we’re floundering.  Usually I find people say this when they see a person is already struggling – so saying “you can handle it” is probably the LEAST helpful thing to say.

Sometimes life just plain sucks.  Things happen to people.  Sickness, broken relationships, accidents, rape and other forms of violence, oppression and abuse.  God does NOT give us those things – sometimes it’s the sin of those who perpetrate crime, sometimes it’s just plain LIFE.

Personally, when I’m treading water in the autism pool, or the depression pool, or any of the other pools I fall into,  I’d much rather hear a person say, “I’m so sorry, that just sucks,” than, “God doesn’t give us…” OR, if you’re a person of faith and want to bring faith into it then say something like this, “You’re not alone.  God is with you.”  THAT statement is completely true.  Jesus lived and suffered, died and rose, so that we don’t have to be alone, EVER, no matter what happens to us.

And then, if you really want to know what would be helpful to ME (or any other person you see struggling), ask for something concrete to DO for us, which quite honestly, might be something as simple as a hug.