Accepting the Autism

Three years ago, my family traveled to Children's Hospital.  It was the final stop on our journey, our quest to find an answer.  Why didn't my almost-three-year-old son talk?  I knew what they were thinking, the direction the other experts were leaning as they evaluated his speech, his motor skills, his ability to follow directions.  But I so desperately didn't want that answer.  I didn't want to hear the dreaded A-word.  I did so much research, so much preparation for our meeting with the Pediatric Neurologist.  I noted all the ways my son did not fit the descriptions (and ignored all the ways that he did).  But there we sat, in that small exam room, and that smug doctor said, "Your son has autism."  I argued with him for a while.  I presented my case.  Chris took James to the waiting room to look at the aquarium because he couldn't wait in that space any longer.  Finally, the smug doctor said, "I can tell you're very intelligent and you've read alot on this subject, but I've been doing this for 30 years and have yet to be wrong."  Oh, I wanted to smack him.  He didn't understand what he was doing to us.  He didn't understand how grave his words were.  I gathered my papers and left.

Until then, my experience with autism had been very limited: a one-time viewing of Rainman, the strange boy from my high school who flapped his hands as he walked down the hall, and Andrew, the 11 year old boy I babysat.  None of these instances reminded me of James.  For one thing, they were all verbal.  James only said a handful of words, and he hadn't added any new ones for more than 6 months.  Most of my denial rested on Andrew, the one I had the most direct interaction with.  I watched him every Saturday morning for more than a year, and I'm pretty sure he never learned my name or even noticed when I stopped coming.  He would sit, rocking, and recite the TV guide.  Rarely did anything actually happening in his general vicinity show up in his speech, nor did his tone ever fluctuate with emotion.  We never conversed.  On the other hand, my darling son, with whom I spent every day, was cuddly, affectionate, and happy to see the people he loved.  He cried whenever we left him, or if his Nana and Grandpa were headed out the door.  I never noticed him doing any odd "stereotyped" behaviors, like flapping, rocking, spinning.  Most importantly, he looked at me.  In the eye.  Sometimes he sat on my lap and we stared at each other.  The autism community has many helpful phrases, one of which is "If you've met one autistic person, then you've met one autistic person."  In other words, despite having the same diagnosis, each individual experiences it differently, unlike the time four of us had strep throat, and we all had red tonsils and took antibiotics.

My biggest fear in receiving the autism diagnosis was its permanence.  I knew enough to realize that it wouldn't go away.  It wouldn't be cured.  It would be with us forever, and there was no way to predict how severely it would affect not just James, but our entire family.  I had more concerns when I read the doctor's folder of information a few days after our visit.  People with autism do not feel empathy.  They lack imagination.  They can't show emotion.  If there were ever to be a basic list of what I want for my children, at the very top would be that they would feel love and would care for not just themselves, but the people around them.  That they would know the wonder and joy of the human imagination, where there are no limits.  And these pamphlets threatened to prevent my darling child from experiencing any of that.

So for a while, I struggled.  We followed the experts' advice: we enrolled James in an early intervention preschool, and that summer we began private speech therapy.  I kept hoping that somewhere along the way, someone would correct this mistake.  They would look at James, really engage him, and say incredulously, "Your son doesn't have autism!  He's just ----."  And whatever that ---- was would have a clear and simple solution.  If he would just start talking, he could explain to them all how wrong they were!  I became more intentional at home, reading more books and using more words to describe what we were doing.  I made flash cards and posters.  James wasn't too interested; I usually ended up with just 1 year old Winston filling the place his older brother had vacated.  I also spent nights beating myself up.  I just couldn't imagine that this wasn't all the result of some terrible failure of mine.  I would go over and over my pregnancy, my delivery, his first few years.  What could I have done so wrong that my child didn't develop the way all his peers seemed to?

The only thing that seemed to help me face what I was denying was time.  As the days and months and years went by, and James met more and more people, and none of them ever said those magnificent words.  As I spent more and more time finding out about Autism, meeting other parents and children who faced it.  It became harder and harder to ignore what was there.  My son is autistic.

The truly amazing thing happened once I accepted the diagnosis.  Once I said it out loud, and believed it in my heart.  That's when I started to let myself off the hook.  That's when I started to look for the hidden blessings in this new reality, the abilities in my son's disability.  And that's when I realized that James isn't Autism.  James is a boy who loves to play Angry Birds, whether on the iPhone, with his plush birds and some blocks, or those tiny rubber Angry Birds.  James is an older brother who gets territorial when the younger ones try to mess up his stuff, who kisses the baby when he cries, who hugs fiercely when he gets home from school after being away from them all day.  James is an affectionate and empathetic person, who gets distressed when others are upset, who smiles expectantly and wants to know the joke when people around him laugh, who gives kisses and high fives to the people he knows well.  And most importantly, he's my son, my cuddle buddy, my special boy.  I couldn't separate him from Autism any more than I could make him be outgoing, or suddenly make him Asian.  But all of his characteristics and personality and neurological differences add up to the awesome person who is my James.

Tomorrow morning, we're heading back to Children's.  James will be evaluated to be given an official "diagnosis", a place on the spectrum.  I'm not fighting the experts this time, I'm not even hoping someone will say, "He's not autistic!" (because, Good Lord, what do we do with that?!)  But I also don't really care too much what the results say.  If his school, his doctors, his teachers and therapists need to classify him to make their jobs easier, if they need to call it something, then so be it.  But to me, he was, is, and will always be my son, and I will call him James.

I Heart Mom

I've struggled to write about my mom.  Its harder than Dad, because that relationship is so easy, so natural, so straightforward.  But mother/daughter?  Its complicated.  It goes up and it goes down.  Emotions run high and the temper I hate that I have was not inherited from Dad.  I can match her scream for scream, and did on many teenage occasions.  I can pick her apart and say, not going to be like THAT.  But in all the ways I feel that she doesn't get me, she also DOES get me.  We are different, yes, so much more different than my mom and sister.  And then there are days like today.  When she really sees me all the way through to my very inner most places, and she loves and accepts what is there.  We are not alike; I want to just hold it all inside and make it disappear.  But she doesn't give up on me, she keeps coming again and again.  Not like an attacking army.  Like a persistent tug.  She comes again and again, until I am ready, until I can no longer keep it in. 

I didn't want to say it out loud.  That would make it real, and I have tried so hard for so long to make it not real.  I didn't want to deal with it, to face all that it would mean.  My mom gets that, she lets me hold on to it.  She doesn't rip it from my hands, because forcing it out would be just as traumatic as it happening in the first place.  But she remembers me.  And this is what the shy child, the quiet one, needs most in a mother.  Someone who accepts the silence but doesn't forget what is not being said.  In all the real ways, the ways that truly matter in a lifetime, I have the best mother.  One time she forgot that I don't like baked beans, and I felt so frustrated.  Why couldn't she remember the very specific taste preferences that were mine and not her own?  And why do I still remember that?  Ultimately, how deep of a betrayal is that?  When you consider the burdens she has carried for me, the difficult decisions she has made and the stressful conversations she has had on my behalf?

Thank you Mom, for never giving up, for never forgetting, for always being ready to hear, even when I wasn't ready to say.

Feelings

We had a parent-teacher conference in November, which was wonderful because we got to hear about all the thoughtful and understanding ways James' teacher reaches him.  How she uses visual cues to help him order his day and learn new concepts.  She recommended that we get an iPad to use at home, because there are so many apps that can help autistic individuals get through life easier, and encourage them to work on new skills.  It was a nice idea, but a pricey one, and also one without any evidence to back it up.  Okay, we could spend hundreds of dollars on a therapy tool, but what if he doesn't respond to it?  What if he just wants to play Angry Birds like he does on his Nana's iPad?  With money being always tight in a single income home, I didn't see how it would be possible.  Then Christmas came, and with it, a gift.  A great big check from Grandpa for whatever we wanted to purchase.  So, okay, we decided to get the iPad, knowing that we would all enjoy its many uses if James ignored it.  I should have known.  My husband obviously did, because he followed up the purchase with nights researching the best apps, and compiled a list.  We went through it together, after the boys were in bed, thinking about what James needed, and where he is going.  The most important was the Visual Scheduler.  An app that lets you compile lists of activities and tasks to be done, complete with pictures and sound.  Example: My Nighttime Schedule...First I can Go to the Bathroom, Brush My Teeth, Put on Pajamas, Read a Book, Listen to Music.  Each icon can be moved to the other side of the screen and the iPad says "All done".  This particular list works wonders when the response to "Time to brush your teeth!" is met with a very emphatic "No."

The visual schedule has another function called a Feelings board.  I went through and made one for each of the available emotions: Happy, Sad, Angry, Frustrated, Tired.  When James got strep throat and refused to take his antibiotic, I added Sick.  Example: When I am sick I can Rest and Take Medicine, then I can have a snack and Watch a DVD/Video.  Once again, complete with pictures and sound, we watched the Sick board each day, then explained that taking his medicine calmly meant he could have a treat...a brownie, some candy, fruit snacks.  It helped, although he still hates medicine.  When the antibiotic treatment was finished, and he was told "All done", he broke out into the "We did it" song from Dora.  But he sits with his iPad and memorizes these lists.  I hear him reciting them in the car, at bedtime.  Whenever his baby brother cries, James says, "Michael is sad.  Cry, have a hug," the options he has been given on his feeling board.  Not only is he recognizing this emotion, in both his brother and himself, but he remembers what he can do, and frequently says, "I can cry" through his own tears when something upsets him.  But the best use the feeling board has gotten happened when I was distractedly texting and he wanted me to get a toy that was out of reach.  I heard him ask, and gave the "In a minute" mumble.  We went through this a few times, as he doesn't usually let up once he has a request.  I kept focusing on the phone (not my finest parenting moment), until he opened the iPad, pulled up the app, selected "When I am Frustrated", and kept tapping the icon, so that "frustrated frustrated frustrated" finally got my attention.  I had to laugh.  I appreciate his tenacity, and also his creativity.  When one way of requesting his toy didn't work, he found another.  And yes, I put down the phone and got the toy.  I should have done it sooner, but then I would have missed his masterful display of the Feelings board.

Another Feeling is Anger.  When James is throwing an all-out, I am losing it, marathon tantrum, he likes an audience.  He likes to rage and cry and hit in whichever room has the most occupants.  This sets off Michael, who doesn't like seeing his big brother upset, and usually the duet of screaming gets to Winston, so that we have a meltdown times three.  Which is great because children crying never gets under my skin *sarcasm*.  To prevent our house from exploding every time James is upset, we have been trying to teach him to go to his room.  Alone, he can rage, he can throw stuffed animals, he can stomp his feet.  Its been hard to get him to stay in there, however, and if I'm home alone, I can't very well leave the younger two unattended while trying to help James come down.  So now the iPad helps him understand what he needs to do. 

Last week, when I had a temper tantrum of my own, I tried to explain it to him.  "Mommy is angry.  Mommy needs to be alone and stomp her feet.  Then I can have a hug and have special time with James."  He repeated my words, but didn't leave me alone.  He sat in the chair in my room and watched me.  He watched me punch the pillows on the bed.  He watched me cry out.  And every so often he said, "Mommy is angry."  Eventually I calmed down.  Eventually I apologized to the kids for losing it.  Eventually Chris came home and I went downstairs to do laundry alone.

I am no longer skeptical about the therapeutic purposes of an iPad.  I am so thankful to both Apple, for making such an effective and easy-to-use product, and to the individuals and companies that develop the apps that bridge the differences between the autistic and the neuro-typical.

Adoption Part 4: Its Final!

So many hurdles to jump, so many forms to fill out, so much time and attention and patience, and now we have made it.  We are ready to adopt the boy who came into our home as an infant and has been here ever since, creating his own special place in each of our hearts.  For us, Chris and I, this different way of adding a family member has been work and waiting and praying and significant.  It has gone so well that we are willing to do it again.  For our boys, James, Winston, and Michael, this whole process has been entirely unremarkable.  A baby came home from the hospital, he lived in our home and wore his brothers' hand-me-downs and learned to feed himself and move around and play with the toys.  For them, this day is just like any other, because Michael has so completely infiltrated our family that there is no reason to question if he belongs here.

We believe in the practice of open adoption, that a child who was not born to us should understand his origins and be able to create relationships with his birth family, if both parties are willing.  We know that he cannot understand these words now, but he will grow up hearing them, and someday he will have questions and need answers.  I am not afraid of that conversation (or plural, as I'm sure it will come up more than once!), just as I am not scared to have "the talk" about sex with my children, because I have the answers, and I know how I feel about the subject matter.  But for now, when it will arise and how it will come to be and the direction it will take are mysteries to me.  I have already imagined about five different scenarios, but the best, and the simplest way I know how to relay it is in these words I wrote in the fall of 2011, when adopting Michael was just a fantasy I indulged in while I held his tiny body close to mine.
  
His birth mother said, "I gave him life and carried him in my body."
His adoptive mommy said, "I gave him a home and carried him in my arms."
His birth father said, "He will look like me when he is a grown man."
His adoptive daddy said, "I will teach him how to be a man."
His birth sisters said, "We came from the same family and you are always in our hearts."
His adoptive brothers said, "We will grow up in the same family and you are always by our sides."

Whenever you feel lonely, or different from the rest, remember we all love you, and know that you are blessed.

Michael, welcome to our family officially. 

Michael and his sister at his birthday party

Adoption Part 3: Are You Ready?

My family, spring 2011

I just said goodnight to my foster son.  Tomorrow, I will put my son to bed, no qualifiers, because tomorrow we are adopting him!  Now I just have to check off my list of preparations, which includes ironing shirts, trimming my husband's bushy winter beard, and packing a bag of distractions to keep all three boys busy while we make this thing official.  I can't help but draw comparisons to that night, almost 6 years ago, when I made similar preparations to become a mom for the first time.  I was nine months pregnant and ready to pop, heading to the hospital for my scheduled c-section.  James was in a breech position, head-butting my ribs until the last moment, standing on my bladder.  I talked to my belly, I told him how excited I was to meet him.  I tried to imagine what he would look like, if he would have my blue eyes or my husband's crooked toes, if he would look like other family members or be a complete original.  I hungered to hear his cries and hold him in my arms (also, I was just hungry, on a 12 hour pre-op fast).  I wondered if I would be a good parent, if the months of preparation had done exactly that, or just alleviated my nerves until it was game time.  Passing the night was the hardest part, I might have gotten about 3 hours of sleep before I was showering(in peace for the last time), and waddling out to the car with my husband.  My parents and mother-in-law met us at the hospital, and everyone excitedly chattered and smiled at each other as we waited for the big moment.  I saw my sister come in just as they wheeled me back to the OR, and it was a special moment between us before everything changed...and how quickly the change happened.  The blue tarp had barely been fastened in place before the doctor announced they were opening me up and suddenly the room was filled with my son's cries.  Thinking back feels like watching a movie on fast forward.  The flurries of activity, the mind-numbing exhaustion, the parade of visitors, and suddenly back home to do this thing for real.

In the morning, I expect no less frantic, emotionally-charged activity, although I will be marching to the car with him in my arms.  The big moment will only take a moment, and then we will be free to go, free to enjoy our new family of five, no nurses, no medicine, no hospital food.  I don't have to wonder what this little boy looks like, I can glance at his cherubic face, consult my mental catalog of moments together and think of his hiccupy laugh, his chubby fingers, his wispy hair.  I had hoped that becoming a foster parent would open me up to a variety of features different from the matching set of boys Chris and I produced together; maybe we would get a kid with brown eyes, brown hair, brown skin, even a girl.  What we got was the third piece to our set, a blond haired, blue eyed rascally boy who now eagerly toddles after the boys he's come to know as brothers.  We'll see many familiar faces from our time in the maternity ward, friends and family who are excitedly sharing this big day with us.  There will be some new ones there too: the caseworker who made this whole process easy and straightforward, the adoption worker who processed our paperwork as quickly as we could fill it out, the tough guardian ad litem who put me through the ringer to make sure I was a suitable parent for Michael.  And, yes, one more similarity:  every so often, I am gripped by that nagging doubt.  Can I do this?  Can I be the mother that he needs, give him the permanence and stability he needs?  Am I ready?  Fortunately, these questions are easily answered.  Yes.  I am ready.  I can be, and have been, this boy's mother.  I know I can give him what he needs, because I already do that.  I whip out peanut butter and jelly sandwiches en masse, I open everything one-handed, with this guy on my hip.  I sing and tickle and kiss and hug times three, and try to make enough room on my lap to hold everyone who wants to be there.

My family, summer 2012

Happy Gotcha Day Bubby!

Bare

 

On Monday, I sat in this very same chair and typed out my deepest, darkest secret.  It was something I had struggled both to hide and to share.  I had tried many times before to write it out, a means that is often easier than speaking.  But for this giant shame, even the written word failed me.  Until Monday.  Until my heart was so moved by the words of others, that I finally pushed back at the shame with a loud "I don't care what they think!"  I didn't post it to impress people or win friends.  My whole life, I had basically feared that anyone hearing this secret would think less of me.  I clicked the button to post it in a surge of emotion.  A moment later, I went back to edit a sentence.  I considered taking it right back down.  But someone had already read it.  Another moment passed, and four people had read it.  I sat back in the chair, the comfy black chair my mom gave me a few months ago, and I faced the fact that it was finally out there.  I couldn't take it back, even though part of me desperately wanted to.  And then the comments came.  They came from friends and family, acquaintances and soul sisters.  Every one was positive, encouraging, calling me brave and applauding my writing.  Wow.  It wasn't what I expected.  It was, in fact, the exact opposite.  I have never felt so loved and supported, and what a moment to experience that, when my soul was bared online for anyone to see.  But the thing that rankled me, made me cringe, was the frequent use of the word "brave".  I didn't feel strong and courageous when I banged out those words.  I felt small, scared, shaky.  I was attempting a break from the prison of shame, and I wasn't sure I would make it out.  But maybe that's the thing...maybe real courage is going forward through the fear.  I have felt so much lighter, breathed so much easier this week.  I had no idea how much that shame weighed me down every day, even as I denied it and hid it and held it in.  I wish I had spoken up sooner.  I wish my words could have given justice to the crime.  But they are out, they have finally freed me.  That's enough.

http://lisajobaker.com/

Ashamed

Something happened.
Twenty four years ago, maybe twenty five?  Before I was old enough to know that dates have significance, before I marked the passage of time.
Something happened.
My parents weren't being negligent, they weren't foolish.  They just put their trust in the wrong person.
Something happened.
Darkness came in and left with my innocence.
No one told me to feel shame.  It came the moment his hand touched me.  A shame so powerful that I couldn't even say: Something happened.  I couldn't voice the questions that haunted me.  Why did this happen?  What did I do wrong?
No one told me I was different, that this kind of thing didn't happen to the other kids.  I just knew it.  And so I continued to be silent.
Sometimes it would come to the tip of my tongue, this confession that Something happened.  I wanted to share it.  Would you think less of me?  The shame pushed it back, choked me. 
When I was 18, I fell in love with a boy.  And Something happened...he listened to my story and said he loved me too.  He held me in his arms and comforted me and cared for me and married me.  He made me a mom.  And holding my precious children in my arms after carrying them inside my body, I vowed that Nothing would happen to them.  I am probably a little too overprotective.  I am maybe too suspicious of the adults around us.  But if it means that they get to be children for all the years they are supposed to, if they can always love themselves and never feel shame, then its worth it.  I will have done my job.
A few months ago, I was reading a post by one of my favorite mommy bloggers.  One in which she disclosed that she had been a victim of rape.  I read these words:
"It's time because the shame should not be mine. It should never have been mine."
Something happened.
That long held reservoir of shame broke.  It flowed out of me with my tears.
I repeat those words, and each time, my voice gets a little louder.
Yesterday, I sat in church.  I felt like my pastor was talking directly to me.  Because he spoke of a Savior who says, "Your heart is too precious to carry that shame.  Lay it at my feet and I will take it all away."  I did.
Something happened.
My heart felt peace.