Dead Hummingbird

Tough morning. Daddy is out of town. Mom forgot to set the alarm. We woke up just as Josh's bus was about to pull up at our house.  I tried to keep my voice mellow and subdued but I think I ended up sounding serious and intense.  "Girls, Mommy made a mistake and forgot to set the alarm.  I really, really need your help right now!"

The girls picked up on Mom's stressed out tone of voice and scrambled out of bed.  They were very impressive in this mini crisis getting themselves (and even helping Josh) to get ready. Someone got Josh a glass of water.  The other one gave him a very crispy piece of toast. Teeth were not brushed thoroughly and we all had crazy hair but we were only 5 minutes late heading out the door with breakfast in our hands. It was a miracle of morning productivity yet it was clear that we were all adrenalinized and on the brink of snapping at each other any minute if anything were to go wrong.

Do you know what gave me the most energy in the midst of this flurry of activity?  It was the fact that Josh smiled through the whole thing.  My son's super power is that he does not pick up on other people's emotions.  Yes, that's often a downside in social interactions but in moments like these, when negative or stressful emotions are swirling around, it can be so helpful.  Josh woke up happy and was blissfully clueless that others were not.  He was glad to be awake and no one was going to take that away from him.

Unfortunately, we opened the front door and found a dead hummingbird at our doorstep.  I think one of the girls might have even stepped on it's little dead wing as she went out. Weeping ensued. It was like a little handful of cuteness and beauty had been crushed right in front of us.  They demanded that we give it a proper burial right then and there. We three females all felt the spike of sad, negative energy in the moment.  Aya.  What to do?

"Girls, girls, please.  I am begging you.  Can we deal with this later?"  I gently placed the hummingbird's corpse in what I called a "special resting place" under a purple bush in my front  yard.

By some miracle, the girls were both able to choose to be redirected.  Josh was already in the car, munching on an apple and smiling broadly for some unknown reason.  At this point in my life it is such a beautiful thing that at least one of my children is pleasantly resistant to being infected by the negative energy or emotions of others.  He does not get pulled into the panic or anger or sadness of the people around him.  He is just where he is at.  I find that sort of wonderful.  

I want to be someone who can smile and remain happy even when people around me are not.  What is the secret to not getting sucked into other people's stress or negative emotions?  Short of having autism, my guess is that the answer is to become a person who is deeply rooted in peace.  I don't even know what that would look like but I want it.  I want to have a spiritual and emotional force field to the destructive and dark vibes that swirl all around me in my day.  

Sometimes life hands you a dead hummingbird on your front door on a day when you are already running late.  Some days are just like that.  The next time I have one of those days, I am going to picture my happy, apple eating, emotionally unfettered son and try to remember that I do not have to sink into heaviness and despair.  It is possible to be free and happy even on chaotic, dead hummingbird days.  

A Shared Joy is a Double Joy

Yesterday I took my kids through a drive-through car wash for the first time in their lives.  It was, to Josh, a revelation.  He was immediately deeply engaged by the experience, exuding a sense of awe that one might have when observing the Grand Canyon or the earth from space. The brushes going back and forth, the spray of the water, the squirting of the detergent, the vibrating rumblings of the machine that ensconced us, these things were absolutely enthralling to him.  

This blog is called "shower heads and hairdryers" because those have been two of Josh's absolute favorite things since he was very little.  Many autistic individuals have a special interest in unique things such as elevators, trains, or dial tones.  Showers have always been the zenith of interest for Josh.  He can spend a good part of a day drawing them.   One year for his birthday, we printed out dozens of images of shower heads and hairdryers and put them up all over the house.  It was better than a trip to Disneyland for my son.  

 As the carwash brushes whirled by spraying florets of water, I could hear Josh whisper with a voice of wonder, "shower head." 

"Yes, Josh" I said. "It's like we're in a shower head.  Like a car shower."

"Like a car shower," said Mr. Amazed.  "Like a car shower."  

For the next 10 minutes, Josh yapped happily about his experience, savoring the sounds of talking about what he had just seen.  

"Like a shower.  Like a brower.   Like a shower head.  Like a dower.  Is it like a zower?  Drower?  "

After a while, Josh's annoyed sisters coudn't tune him out.  "Josh, please stop."

But there was no stopping him.  Home boy was on a roll.  "Zower.  Like a shower.  Shower head. Brower.  Would you like a dower?  It's a car shower.  A car brower."  

"Girls, let him talk.  He's happy."  I said, taking in Josh's exuberance.  

Yes, Josh was very happy and he wanted to share it, in his own way.  And this filled me with joy, even though it was a little bit like being swallowed by a Dr. Seuss book.  My son was sharing about something.  He wanted us to share in something that he was experiencing. 

When I serve in our church's nursery, one of the things that tears my heart a little is watching little 9 month babies point to things.  Pointing is a sign of something very important in a child in terms of his or her neuro-social development.  That child is wanting to share about something with another person.  Pointing, eye contact, shared attention on another interesting object, these are things that naturally happen in a typically developing child, even at a very young age.  It is a critical building block of learning and connecting.  A child points to something then an adult says, "Yes, that's a train. It's Thomas the train.  And this is Percy.  Percy is green!" With a facial expression, tone of voice, and eye contact the child takes in the nuances of meaning.  The experience of sharing attention is a magical portal for learning.

Most autistic children have a very low impulse to have shared attention.  They are often content to experience things on their own, thus, their worlds tend to develop in ways that are not very connected to most people.  This was true of Josh.  I don't ever remember him pointing to things.  He rarely wanted to share his interest or joy in something that was interesting to him. Shared interest has been, to Josh, a very, very thin thread in his developmental life but it's there. 

Yet, in this moment, even in his ramblings, I could tell that Josh was trying to express to us that he had experienced something extraordinary: a shower in a car.  I longed to milk this moment of shared attention and shared joy for all that it was worth.  

This morning as I woke Josh up, I said to him, "We were in a car shower yesterday, huh, Josh?"  He smiled a little smile and said, "Car shower".  And I thought that there was a split second of eye contact as he said it.  

A professor once told me that a shared joy is a double joy.  And even though I need to be at work in a few minutes, I have to post about this moment because I want to double, triple, quadruple my joy.  My son had a moment of joy and, in his own way, he wanted to tell me about it!  It brings me such happiness to reflect on it, to relive the moment!  ZOWER!

May you have a moment of wonder today and may you have the grace-joy-synergy-energy to share about it.  

I'm Having a Very Good Life

One of my favorite movies in the world is a little known film called Mi Familia (or My Family).  I love it because it’s a beautiful snapshot of Los Angeles, a city that I deeply love, and about three generations of a Mexican family, a culture that I love.

I saw this movie when it first came out 21 years ago and since then, at least every couple of months I think about the final scene of the movie.  The matriarch and patriarch of the story, Jose and Maria, are sitting together in their golden years reminiscing about their past and they say, “God has been good to us, we've been very lucky, and our life it has been very...very good.” 

I remember being totally shocked by that scene because in their lives, Jose and Maria have endured many horrible, difficult things such as illegal deportation, the LAPD gunning down one son in front of another, several children going to jail, gang violence, the death of a daughter-in-law as she gave birth to a grandson, all kinds of racism, poverty, back-breaking work etc.  But somehow, near the end of their lives, they are grateful people.  They are grateful to God.  I remember thinking that it was some sort of miracle or parable --- to have a very difficult life but to be able to see it as good.  To have a glad and grateful heart even after having endured so much sadness and evil is shockingly striking.  The memory of this scene has been deeply planted in my mind.

I want to be like Jose and Maria. 

As someone on the journey of parenting a child with special needs, it is easy to see your life as less than good.  There are difficulties, isolation and so many things that you just can’t do.  I find myself wondering, “What is the next crisis that will come along?”, "Will I find poop in random places in my house?", "Do I have the strength today to battle with various systems that seem take a pound of flesh from me before giving me the meds that my son needs?"

It is still so easy to fall into comparison with other people, other families.  And then there is the future.  What will Josh do when he is booted from the school system?  Who will take care of Josh when we are no longer able to?  Will I ever not be parenting someone who functions as a toddler?  Anxiety, discontentment, bitterness:  these things offer themselves to me daily like shiny fruits from the forbidden tree in the middle of the garden of my life. 

But I am beginning to get a glimpse of what it might mean to be like Jose and Maria.  On some days, I look at my beautiful son and I find myself thinking about how lucky I am to get to be his mom.  I see him as the overwhelming gift that he is to me.  Through Josh I have learned compassion, servanthood, slowing down, being needy, waiting, the blessed state of being a dependent child.  I would not trade these lessons for anything.  I imagine myself, at the end of my life, thanking God and giving him unending praise for having the wisdom to give me a child like Josh for the sake of my own sanctification.  I picture God laughing that I could share His joy in the great gift of my son. 

As my mind stretches out to meditate on contentment, I remember a book that I read years ago called The Rare Jewel of Christian Contentment. This "rare jewel" of a book, written almost 400 years ago, addresses the basic problem of human discontent and suffering. True contentment, argues the author, is achieved by surrender to God.  I feel the hardness of my heart and the smallness of my brain whenever I approach this book.  But I also feel the warmth of the truth in it's contents and I am strangely attracted to it.  

I might be a complaining, entitled, cranky person tomorrow or even an hour from now but right now, I see and I submit to the reality that God knows what He is doing.  He loves me and wants more for me than I can even dare to imagine.  I am having a very, very good life.  

A Rich Tangle of Emotions

Yesterday I dropped Josh off at his winter day camp at his autism therapy center.  We walked into the waiting room where kids were meeting up with their one on one therapists for the day.  As I took in the sights and sounds, I was inundated by a rich tangle of emotions all at once.  These are a few of them:

Empathy.  One tall, well dressed Asian dad with an ID card from a well known local high-tech company pleaded with his child.  His clearly autistic son, about 5 years old, was not happy about being transferred to his therapist for the day.  As the boy escalated into a full blown tantrum, I could feel the rising desperation of the father. "Please.  Please Jacob."  He begged his son.  "Please don't do this.  You'll be ok.  Mommy will pick you up soon.  Please, sweetie.  Daddy has to go to work.  Please."  Compassion cut through me like a hot knife through butter.  How many times have I experienced this very same "bad transition" moment?  I could almost read this man's mind.  He was probably thinking about what they could have, should have done to prep his son for the transition, knowing that it might not have mattered anyway.  He was already dreading the costs that they might have to pay in the evening if his son had a bad day at the program.  He was probably already late to work but couldn't wait to get there so he could feel like a normal person again with the possibility of experiencing competence and productivity.  I offered a knowing smile but stayed out of the way and said a quick, silent prayer.  

Pride.  The whole time while this was happening, my own son was choosing to behave with shocking maturity. He chose a spot on a couch as far away as possible from the upset child.  He stuck one finger in an ear then focused his attention on eating his apple.  Oh, how far we've come on the journey of auditory sensitivity.  There was a time when a situation like this could have resulted in hours of crying.  Now, Josh is clearly not happy or relaxed but he is dealing with it.  I'm filled with admiration for this kid who has had to work so hard to overcome so much. Over the past thirteen years, we have come so very, very, very far.

Anger.  I could see in an instant that the younger sibling of another autistic child was typically developing.  The three-ish year old girl had the intuitive sense that her brother was struggling and she knew to keep quiet and out of the way.  She contented herself with reading some of the books which were available in the waiting room yet ignored by all of the autistic kids.  She found a picture in a book that excited her and had an immediate impulse to share her discovery through pointing and eye contact.  I watched her and saw how her brain was a meteor of learning, making cognitive and social connections by the second.  I was gripped by the thought that it's so unfair that some kids get to have brains that almost seem to self-develop.  Other kids, like my son, have brains that are so slow that they never learn their ABCs.  Some kids are able to integrate the world around them and make growing sense of it.  To others, the world is a places of constant threats and chaos.  Why?  How is that fair?  It's not and sometimes it makes me so mad that I want to shake my fist at God.

A few minutes later I sat in my car, zombie like.  These and other emotions swirled in my head, preventing me from driving to work and moving on with my day.  How are you supposed to transition into being a centered, productive adult when moments like this assault you with such a barrage of emotions?  How can I walk into my day without wearing all of these feelings on my person like heavy jewelry?  

As I took a few slow breaths I sensed the ever-present invitation of Jesus:  "Give me all of your thoughts and emotions.  I will keep them safe."  

Safe. Oh, yes.  I closed my eyes and remembered the safety of the One who can handle every whirlwind.  Jesus, He is not overwhelmed, even when I am.  He always sees us with eyes of love, with attentive ears.  

One by one, I let go of these disparate feelings and laid them at His feet.  I felt my spine lighten as I shared my emotional load with the one who offers to yoke Himself with me.  

How do you walk through life when you face intense moments of varied emotions?  You must let the One who is your constant companion lead you. You accept that you are never alone and never left to carry even your momentary burdens by yourself.  

How to Help Your Typically Developing Kids Love Their Special Needs Sibling

I’m as desperate as the next mom for my kids to get along.  My girls are one year minus three days apart and pretty competitive for airspace and attention so I pretty much pray desperate prayers every day for their relationship.  But I have a special hope that my girls will love their brother in a free and unburdened way when they grow up.  After all, God willing, their relationship with him will last longer than mine.  I realize that every family is different but here are some things that I am learning about how to help foster love and bonding between typically developing kids and a sibling who has special needs.

1       Create and reinforce a culture of snuggling. 

When my husband and I became adoptive parents, we were taught about the significance of “skin on skin” time to bonding so we tried to maximize touch and hugs whenever possible.  In the early days after we brought our adopted babies home, my husband used to rip off his shirt whenever he could and hold them close to his chest.  

Nowadays we try to get some time together in jammies as a family on Mom and Dad’s California King sized bed as much as we can during our precious, lazy weekend moments.  Sometimes we read quietly.  Sometimes someone will read a book aloud.  Sometimes Josh will request a song that we sing part of and he sings part of like "He'll be coming 'round the mountain . . ." or "This little piggy".  Josh will ask to sing or say it over and over until I have to put a stop to it in order to not lose my mind.

Being autistic, Josh has a limited tolerance for being around other people, especially when the girls were more wiggly and vocally eruptive.  But Josh appreciates the sensory input of this kind of family time.  He loves having his head and face rubbed and getting to smell his mama’s hair so he’s willing to be us for short periods of time.  Whole family snuggle times are some of the happiest times in our life together. 

The other day, Hope and I woke up inexplicably early and so we decided to invade Josh’s bed to snuggle with him.  Touch is a nice way to connect, especially with a mostly non-verbal person.  After a few blissful minutes, Hope said to me, “You know what, Mama?  When I grow up, I want to marry someone who can help me take care of Josh.”  I told her how much I appreciated that and that I expect that there will be a lot of people in Josh’s life who will help to take care of him. And then I smiled and almost cried for the rest of the day.

2       Debrief stressful moments.

My husband and Hope were out of town for Halloween this year so it was just Josh, Anna and me left at home to take on trick or treating.  We had plans to walk around our neighborhood with one other family.  Everyone had been prepped with the knowledge that Josh might not make it walking around in the dark with crowds of other people around.  Indeed, he lasted about 7 houses before having a major crying, screaming meltdown on the sidewalk.  (He was unhappy that I wouldn’t let him eat every piece of candy immediately upon receiving it.)  The other family graciously offered to take Anna with them while I walked Josh home.  Anna was very motivated to stay on the mission of pursuing a more ample stash of candy so she was willing to go without me. 

Later, at bedtime, I asked her how she felt about Josh’s public meltdown and having to trick or treat without a parent with her.   Her emotions were complex and layered.  It was good to get to talk about the evening in retrospect.  In the end, she seemed to come to a place of satisfaction and declared it the “best Halloween ever”.  I think that getting some space to talk about how it was for her enabled her to ultimately focus on the good parts and let go of the bad parts.

3      Try to give each child their own special times. 

I am aware that Josh and his needs invade a lot of Hope and Anna’s lives.  They have both spent more than their share of their lives being schlepped along to Josh’s medical or therapeutic appointments.  There are a lot of things that our family can’t do because of Josh.  Their brother often takes more than his fair share of their parents’ attention. 

I have found that it’s important for my girls to each have special time where they get to have our undivided, undistracted attention.  For example, this year each girl got to have their own small birthday parties (In the past we’ve had a larger, joint one because their birthdays are so close together).  Significantly, their brother did not come.  He would not have enjoyed Anna’s soap making party or Hope’s movie watching party anyways.  But the critical piece was that I was able to fully focus on the birthday girl each time without needing to make sure that Josh was not overwhelmed or eating non-food items when we weren’t watching. 

For the past two Easters, the girls have received gift certificates in their Easter baskets for a special overnight with one parent at a local location of their choosing.  This has been a special way to get to have experiences that the five of us could never have because of who Josh is.  Anna and I went to a small amusement park about an hour away.  Hope and her dad explored Alcatraz in San Francisco.  Both trips were definitely good deposits into the love tank.  Both sets of us came home with a sense of overflowing with stories and affection to spare and share.  

Well, those are a few of my ideas thus far in our journey.  Do you have any other suggestions for us?  We are eager to hear your ideas and stories. 

Snapshots from the Short Bus

For years I’ve been so preoccupied with getting Josh onto or off of the bus that I have rarely paid attention to the other kids who ride the bus with him.  We live on a busy street with two elementary schools on it so the morning and afternoon bike and car traffic is pretty intense.  I’m aware that there is usually a line of people behind the bus waiting for me to load or unload so I try to move quickly. 

Most of the kids who ride the bus with Josh are not easy to get to know, especially when you don’t have a lot of time.  Many are non-verbal and do not make eye contact.  

For example, one boy never, ever looks up, even if Josh sits near or next to him.  He always has his eyes closed or seems to be looking out the window at nothing in particular.  In over two years of being on the bus with Josh, I have never heard him utter a word, much less try to interact with anyone.  One day, I was surprised when he handed me an envelope on which he had written Josh’s name in shaky letters.  It was an invitation to his birthday party. 

I moved heaven and earth in our family schedule so that Josh could attend this, his first “drop off birthday party” for a peer at school.  When we arrived at “Bill’s” home, Bill greeted us at the door with absolutely no affect on his face.  However, his mother greeted us warmly and told me that her son had really, really wanted Josh to come to his party.  Apparently, he has a great affection for Josh and often tells his mom about how Josh seemed to be doing, like if Josh cried on the bus or if he sang along to songs being played on the radio.

The party was a sweet gathering of 10 young teens mostly from the other special ed. class at Josh’s school that is comprised of slightly higher functioning kids.  Bill’s mom assured me that she and her husband could handle Josh if I left for a few hours.  I did and came back slightly earlier than I said that I would.  I found Josh to be a picture of contentment, happily eating his fourth piece of pizza and humming to himself in the sun.  Apparently, they had played a game where you look for hidden pieces of candy in the garden and he had done quite well.  (My visually impaired child always seems to have excellent vision when there are treats involved.)  The other kids were occupied with riding or analyzing the zip line that they had installed on their property.  I was struck that Bill and his friends were sucking the marrow out of the moment together in their own autism spectrum kind of way.  Bill seemed very energized yet relaxed.  He buzzed back and forth between his other friends and Josh, expressing in his own way that he wanted Josh to be happy. 

As I chatted with Bill's mom and just watched him work the crowd, I realized that Bill is a young man with a rich, beautiful, engaged life, which you would never know from just observing him looking catatonic on the bus (when he is probably tired and uncomfortable).   Apparently, he has all sorts of passions and interests such as VIP baseball (for kids with special needs) and ballroom dancing.  I wonder how many other times I make false or shallow assumptions about kids just because they initially present differently from neuro-typical kids.

The other day, I took a moment to ask a girl who has ridden on the bus with Josh for a long time how she was doing.  She smiled and told me, in her halting way of speaking, that she really, really wants Josh to go to the next school dance and that she noticed that his sister’s haven’t been coming out to get him off of the bus as much as they used to.    She even remembered Hope and Anna’s names!

I laughed out loud with surprise and joy at how sharp this little girl is and how much is going on in her head.  I saw for the first time that she, too, is a complicated, beautifully-minded person.  There is so much beneath the first layer of what one can see or experience with kids like this who ride the special ed. bus.   Far from being “simple” people, kids with intellectual disabilities are just as dimensional and profound people as anyone else.  It’s just that you have to be even more patient and observant to access it.  I’m so grateful that Josh gets to “be in community” with these complex and wonderful kids who are much more than what they seem. 

Overnight Summer Camp: Pick Up

Yes, I was a bit of a mess while Josh was gone at overnight camp;  not a full blown "can't deal with my life for a while, send out a mass email to all of my friends, stop meeting the needs of the rest of my kids" mess but a more subtle, internal mess.  My thoughts kept wandering toward dark scenarios of Josh getting lost in the woods or crying all night.  I kept having that jolting feeling of realizing that I've left my cell phone somewhere but then I would realize that it wasn't my phone, it was my first born, my thirteen year old baby who NEEDS ME DARN IT!

But surely, they would call me if he was having a really hard time... and they did not call.  So I tried to enjoy my weekend.  I went to my daughters' musical performance that came at the end of their summer day camp.  I helped them run a lemonade stand in our driveway. I took them out to a movie.   Admittedly, all of these things were much easier without also managing Josh.  I tried really hard to let it be a true respite weekend.  On Sunday morning at church, I had someone pray with me so I could let go of my worries and be more of a mom that trusts my son into God's hands.

Finally, after lunch after church, the girls and I drove back up the hills to the respite camp.  I race-walked to the check out station and signed all of the forms.  It seemed to take forever for Josh and his counselor to come out and when they did, my beloved boy had a silly hat on his head and a smile on his face.  "Hi Mama" he said, without prompting.

I asked his buddy how he did and this is what she said, "Honestly, in my three summers of being a counselor at this camp,  Josh was the easiest, most happy camper by far."  She told me that he had not once cried out or gotten upset.

She handed me their schedule/ list of activities and it turns out that Josh gladly participated in the following:

- Rode a horse
- Swam at a pool party with games (where he won the prize for "Best Underwater Dancer")
- Attended a dance after dinner
- Participated in a squirt gun fight
- Made a hand puppet
- Watched a talent show
- Ate a lot at an ice cream party
- Made sand art
- Packed up his own bag
- Enjoyed a slide show of the camp and picked up his camp award.

My relief was like a fresh wind on a scorching day.  What is this new world that we are in?  What is this new reality where I could possibly have a few days off and my son is having fun??!!

As I drove down the hill with my beloved son, who is no longer my baby, I realized that I had a little bit of sadness mix in with my joy.  He does not always need me in the same way as he has.  For all of my talk and goal setting about independence skills, honestly, that's not as easy for me as I thought. I'm used to being the one who keeps this boy alive day in and day out.  I am learning that letting him grow up means getting a chiropractic adjustment on my sense of my own identity as a special needs mom.   It's a little painful but I'm glad and willing.