Clipping Nails and Trusting God

"Today's the day," Alex announced as we were getting ready for school.  "It's time to cut Joshie's nails."

My daughters and I groaned in unison.  We all hate it when this has to happen.  When we engage in the massive challenge that is cutting my son's fingernails, we have to shut all of our doors and windows first because he screams like we were torturing him. I have thought about visiting our neighbors and interpreting for them what is going on so they don't call Child Protective Services but I figure, they already know Josh and have heard plenty of his strange sounds.

This is a child swallows 12 pills every day, gets an intramuscular shot every morning, gets a blood draw done every month and handles all of these things maturely and peacefully, like they are just a fact of life.  When we go to the pediatrician's office to get flu shots, it's my autistic child that I am least worried about.  Josh obeys my requests better than any other child that I am currently parenting.  He even sometimes does his chores without my having to ask!  Generally, these days, Josh is a sweet, compliant kid until we take out the nail clippers.  Though legally blind, Josh can see the little silvery tool from a mile way and he immediately starts yelling "NO! NO! NO! NO! NO!" Suddenly we become evil, untrustworthy parents who are intentionally trying to inflict great pain on our child.

But what can we do?

The thing is, Josh's nails grow faster than any one's in our household.  Maybe it's the growth hormone shot that he gets every day.  You blink and his nails look like Marilyn Manson's.  

Also, Josh has no qualms with putting his hands anywhere then into his mouth or nose.  Josh went through a season where he loved to caress public garbage cans (where he would find pre-chewed gum stuck to those garbage cans and stick it in his mouth).  A few months ago, Josh and I were walking to pick my girls up from their school.  As we walked across a grassy area, and as I was distracted by chatting with another parent that I knew,  he felt that he needed to scratch his groin so he just pulled his pants and underwear down and did what needed to be done.  By the time I reached him and quickly pulled his pants back up, he had already moved on to picking his nose.  He's a strange kid but I love him.  

I have Josh wash his hands a lot but suffice it to say that keeping Josh's nails trimmed is part of what we have to do to minimize the grossness of our lives and of our household.  

And let me tell you that we've tried it all: cutting his nails while he sleeps, clipping after long bath, promising great, sugary rewards. Nothing works.  At some point, we have to bite the bullet and cut his nails.

Now, the level of strategy that this endeavor entails might rival any NFL game or great, historic battle.  First we discern which room in our house has the best light.  Then, my 6 foot 3 inch tall husband has to put his strength into holding him down without hurting him while I try to cut with speed, agility and accuracy.  Josh is 107 pounds now so he's quite strong.  Alex and I end up often sweating, usually swearing.  Sometimes we go the extra mile and do the toes but the priority is the fingernails.

Hope usually ends up weeping because defending her brother is one of the strongest impulses in her 7 year old life.  She knows that we are not hurting him but she can't bear to hear him scream.  When Josh's screaming gets really bad, Hope gives us the stink eye and tells us that we are bad parents.  Anna goes into another room and buries her head into a book.  I picture my girls having to debrief this scene with a therapist years from now.  I'm just trying to do what's good and healthy for my son but it just creating so much tension and conflict for everyone.  

Sometimes I wonder if this is what God experiences with me when he is trying to wrestle me into some sort of cleansing or pruning.  As I look back on my life, there are so many things that God has had to regularly strip me of so that I can have a healthier life.  Toxic relationships have had to be severed.  Bad patterns of negative self talk has had to be regularly clipped off.  Addictions have had to be cleaned up.  I know that, were it not for God's loving intervention, parts of my life and soul would be blacker and grosser than the inside of Josh's nails when it's way past time for clipping.

And how have I responded?  Sometimes, I feel like I writhe and scream as much as Josh does.  I yell at God that it's going to hurt. I ask why He is doing this and I accuse him of being a bad, bad God for doing these things to me.  Unexpected transitions, unmet expectations, aberrations from the usual societal norms, these things have all felt scary and threatening to my human sense of what is safe and okay.  Yet there are times when God has drawn near, held me down and said, "Sweetie, it's time.  We're going to do some cleaning up today because I love you and I want good for you."

Strangely, this morning we experienced a true miracle.  Alex got out the clippers and Josh remained calm.  It was clearly still hard for him.  He still tensed up when we started but, as the picture above shows, it was the first time in years that clipping nails was a one parent job.  There was no screaming, kicking or having to hold him down.  He just sat in a chair like a normal person and waited until the unpleasant task was finished.  It feels like Josh just woke up one day and decided to trust us.

I wish I could experience this type of miracle in my own heart towards God.  When God does something in my life that I don't understand or that I fear, I want to experience a supernatural, miraculous ability to trust that He has my good in mind and that He loves me.  I want to stay calm where I used to resist.  I want to be able to sit still and let my Father who loves me come close to me and help me with my personal spiritual hygiene, no matter how yucky or intimidating things may be.  

Feeling Secure

A few weeks ago the kids and I happened to visit a park in town that we hadn't been to in a while.  To our surprise, the city had replaced one of their regular swings with an adaptive swing, one intended to give more support to a child, likely one with some sort of special needs.  Josh found his way into it and immediately started smiling and laughing.

His sister pushed him for a while and when she stopped, Josh said, "Want more push."  Between his two sisters and I, we must have pushed him on that swing for at least 30 minutes.  Each time we stopped, Josh asked, "Want more.  Want more." He requested with such a sweet cackle/ giggle that we couldn't say no.  We were pushing him higher than he's ever swung before and he was just loving it, laughing loudly like a lunatic the whole time.  

When we finally stopped to rest, I realized that, while Josh loved swinging when he was younger, he hasn't been a fan of playing on swings for quite a long time.  We have a park near our house that only has regular swings and he never wants to be on it, preferring to sit in the sand and watching the sand pour through his fingers instead.  It's been years since I've pushed this kid on a swing.

Why, then. did Josh want to swing on this swing so much?  And why was it making him so darned happy?  Why was he willing to take a risk to let us swing him so high?  It dawned on me that, due to the shape and design of this adaptive swing, Josh felt secure in it.  He is quite sensory seeking so he loved the proprioceptive input that he got from a swing. However, because of his low tone and poor core muscles, I think that he feels insecure about being swung and having to hang on for himself.  But with the extra support of this adaptive equipment, he could relax and just give himself to the experience of swinging.

This observation made me think about how there might be other ways that Josh might be willing to take new risks if he had more support, specifically, a better sense of feeling secure.  Might Josh be willing to roller skate some day if we figured out a situation that worked for him?  The very thought of it makes me laugh out loud!

I also found myself thinking about some of the ways that I might be willing to take new risks or enjoy a certain activity if I had more support in some way that I feel insecure.  For example, might I do more writing if I had the equivalent of an "adaptive swing" in my life?  Could I fly higher in some way, laughing as I went, asking God or my community or a mentor that I "want more push"?

How about you?  Is there some way that you have been avoiding something wonderful because you feel insecure?  How might you seek out an "adaptive swing" experience?

Josh Has a Friend

Never, in his 11 years of life, has my son been even remotely interested in having a friend.  Josh has always been more of a "parallel play" kind of kid rather than someone who could relationally interact with his peers.  Actually, Josh doesn't really "play" in the traditional, imaginative sense so it's always been more of a question of whether he'd tolerate being around other children. On any given day, it's hit or miss whether he can even name which of his sisters is Hope and which is Anna.

Of course, Josh has lots of people in his life.  Thanks to his school, our church, our extended family and a gazillion therapists and service providers, there are tons of people who appreciate Josh, care for him deeply and work for his growth.  He is very bonded to his dad and me.  When he is hurt of upset, he will say, "I want Mama."  When he wants to snuggle, he will ask for his dad.

But he has never had a friend. . . until now.  Sort of.

This morning, as I was helping Josh into his seat on the school bus, I realized that he always chooses to sit next to Vincent, who is a 7th grader in Josh's special education home room class. There are plenty of empty seats and even empty rows but he always finds this same kid, sits down, and waits for me to help him with his seat belt.  Maybe he feels safer with Vincent than with the other kids, knowing that Vincent is less likely to make random sounds that are sensorily challenging for Josh?  Maybe he just likes Vincent.  I don't know.

I don't know his official diagnosis but Vincent seems like he's also an autism spectrum kid but with more verbal skills and physical agility than Josh.  The other day, when Josh plopped down next to him, Vincent put his arm around Josh and said to me, "Josh my friend."  This both made my day and made me want to cry at the same time.

Yesterday, I observed their class while they were doing some outdoor play in the grass near their classroom for a quick break.  Several of the boys were kicking a ball around.  Vincent kept insisting on kicking the ball to Josh despite Josh's complete disinterest in receiving, kicking or chasing the ball.  Josh was more engaged in flicking his fingers in front of him and making humming noises but this didn't deter Vincent one bit.

 "Josh! Josh!  Here, Josh!" Vincent enthusiastically exclaimed, requesting, but not necessarily needing, reciprocity.

Noticing this small sprout of a "friendship" between Josh and this other boy, who is a peer, touches me.  I've always been sad at the thought of Josh not being able to develop friendships in a traditional way as, in my world, friendships are one of life's great pleasures and God's great mercies.  To me, life feels barren without the sense of being seen, liked, chosen, and enjoyed by someone who is like ourselves in many ways.

What does it mean for a child who has autism and intellectual disability to experience friendship?  I don't know but, today, I feel filled with hope by seeing this little connection.

Vacationing Without Josh

My husband and I were standing at the beach with our arms around each other watching dolphins frolic in the water.  Our girls were entertaining themselves for the seriously long time, playing nicely together as if they always behaved like sisters who are best friends.  There was just enough sun and breeze to make you feel alive and alert.  It was a marvelously beautiful day.

Alex let out a mournful, guilty sigh.

"What's wrong?" I asked him.

"I feel relaxed," he said sadly, looking like a big dog who had eaten the Sunday roast but knew enough to feel conflicted about it.

I knew what he meant.  It was the first time we had ever done a special family day trip without Josh and it was so nice.  One on one parenting is a heck of a lot easier than the zone defense that we have to use when we have Josh.  It's usually, "You take the girls.  I'll take Josh."  The girls are easier to herd together and Josh needs the full attention of one adult.  Talking to each other when we are anywhere with our three kids is almost always out of the question.

We were taking a day at the beach with just the girls because Josh had summer day camp that week but the girls did not.  Alex has Mondays off so we took a traffic-free drive to the beach, played at the beach for several hours, had a lovely lunch together then went strawberry u-picking.  There were hardly any ripe strawberries but it didn't matter because the girls had fun running up and down the fields while Alex and I took in the landscape and caught up about life.

How can having such a lovely, restful day make us feel so bad?

Because part of why we were able to relax was that Josh was not with us and this felt strange.

We were not constantly worried that a nearby child's cry would set our son off in a tantrum.  We were not watching to see if he ate sand or other non-food items.  We were not worried about him suddenly declaring that he had to go to the bathroom and us needing to find one OR ELSE.  We had come to this place not making any mental notes about where the nearest hospital was just in case he had a medical emergency.

No, we were just with two typically developing, fully toilet trained, children who could occupy themselves through imaginative play and reading books.  They were not guaranteed to be well behaved at all times but you could at least reason with them.  Typically developing children have a much wider array of things that you can threaten or bribe them with.  This is useful on vacations.

Being with just Hope and Anna felt so easy compared to being with all three of them.  Alex and I found ourselves surprised by our ability to wind down, even with our two exuberant, chatter-bunnies in tow.  At least they were joyful, self-entertained bunnies.

A few years ago I met with a woman who has an adult son with autism.  When I solicited her advice for long term family survival, she told me one thing:  take vacations without your child with special needs now and then.  I smiled, nodded politely and thought to myself, "No way am I ever going to do that."

The thought of going away and enjoying family time without the child who needs me the most was unfathomable.  How could I truly rest knowing else that someone else was watching Josh?  We do date nights without our kids and even overnights sometimes but it seemed so strange to have "family" time without Josh.  What would that be saying about his presence and role in our family?  That he wasn't welcome?  Or truly one of us? That he was too much work to be included?

Well, now that Josh is 11, I have reached the point of seeing where my friend was coming from.  This fall, the girls have asked that we go to Disneyland (for the first time) rather than having birthday parties.  Realizing that Disneyland would be an overstimulating hell for Josh (and that he'd be saying, "I want car" within the first expensive hour) we have decided that we are going to go without Josh.  I am going to embark on the gargantuan task of arranging childcare and training a number of different people in our community to be with Josh so that the rest of us can be gone for 4 days.

And what are we saying in making this choice?  I am saying that it is okay, even good, for us to have family time without Josh sometimes, especially if we are going to do something that he would not enjoy anyhow. Beyond that, I am realizing that doing well in the long marathon of raising Josh means taking respite times away from him, as in individual parent, as a couple, and as a family.  This is a tough and unexpected part of the journey but I feel that I'm being led forward by a sense of peace and conviction. I'll let you know how it goes.

My Son's Flat Nose

My sister and I happen to be fair skinned for Korean girls.  Since we grew up in the rainy state of Oregon and rarely saw direct sunshine, we despised our paleness, as it seemed, to us, a sign of poverty and unstylishness.  Living in the Pacific Northwest during the height of the 80's tanning salon fad we were always covetous of the "I can afford to vacation in Hawaii and lay around in a pool or play tennis in the sun" look that the people around us were always seeking, authentically or otherwise.

When our family visited Korea when I was in the fourth grade, my sister and I were shocked and confused to experience that our pastiness was actually held in very high regard.  Random people that we met at restaurants would comment with delight about how "wonderfully white" our skin was. One time, an older lady who happened to be with us in an elevator at a department store reached out and lovingly stroked my face, as if to confirm for herself that I, indeed, had such a fabulously light complexion. 

It was around that time that I realized that there was a whole set of physical attributes that my Korean culture and extended family affirmed; light skin, big eyes, high cheekbones and a high, narrow nose. It took me a few more years to realize that these are not the typical characteristics of a traditional Asian face but, rather, a Caucasian face.  And yet, my culture affirms and delights in the attributes that are not common or natural to our own people.  South Korea now has the highest number of cosmetic plastic surgeries in the world per capita overtaking Brazil as the plastic surgery capital of the world.  One in five women in Korea have undergone some sort of cosmetic procedure, which have become popular graduation gifts from students' parents.

Not only do we affirm those who have more Caucasian features, we look down on those who have features that are more commonly occurring to Asians.  Dark skin, slim eyes, broad cheeks, and flat noses were seen as undesirable, even ugly.  Ladies encouraged moms who gave birth to "unfortunate" children with flat noses by saying, "Don't worry.  It will grow into being more raised. Just give it little pinch every day."

As I look back to my childhood and youth, I am astounded and ashamed at how deeply I had internalized that prejudiced paradigm of beauty.  I have a memory of going to a dance in high school at a town about an hour from my hometown.  I was one of a handful of Asians in my school so I was quite used to being one of the only Asian Americans around.  Somehow, there was a group of Asian boys at this other high school and as soon as I walked into the room with my blonde haired friends, we were aware of each other.  Eventually, one of them came over and asked me to dance.  I was self conscious for several reasons.  I was a teenager and, thus, spent most of my time being painfully self-conscious in general.  Also, dancing with an Asian boy made me aware of being Asian, which made me feel self-conscious.  But the most important factor in my discomfort was that this boy was of Southeast Asian origin and had the characteristics that many Southeast Asians have: dark skin, a shorter build, and a flat nose.  I was so repelled by his looks and so uncomfortable with the situation that I quickly made an excuse and walked away.  Also, he had put his hand on my butt.

Now, as a mother to a boy with Southeast Asian heritage, I reflect upon my own culture's obsession with western standards of beauty and my own internalization of those values and I grieve.  I want to shake off those messages that you have to look western to be beautiful like a dog shakes off excess water after a bath.   

I'm so glad that Joshua's lack of awareness about the subtleties of cultural values prevents him and protects him from taking in inappropriate and incorrect messages that he is inferior because he has a broad nose and dark skin.  And trust me, his nose is flat, flat, flat.  My husband and I sometimes joke about how we wonder if there is any cartilage in there at all even as we are admiring how stunningly handsome our son's face is.  Now, I see how perfect Joshua's flat nose is on his face.  And in the summertime, Josh's skin turns into a beautiful caramel macchiato color that is, on him, glorious.  To a mom who adores her son, everything about how God made his appearance is a thing of wonder and artistry.  In this way, I believe that God is using "mother love" to transform me to see the world more rightly.

Recently, in his response to the Trayvon Martin/ Zimmerman case ruling, President Obama exhorted Americans to be "a little bit more honest and ask yourself your own questions about, am I wringing as much bias out of myself as I can?  Am I judging people as much as I can, based on not the color of their skin but the content of their character?" I think that what he is getting at is that racism and prejudice is not a binary reality.  It's not that some people are racist and some are not.  The truth is that we all have ways that we've been influenced by fallen beliefs that do not reflect the heart of God and of righteousness.  For me, trying to walk in rejection and repentance of  my own culture and upbringing's definition of beauty is part of that "wringing out" process.

The ABCDs of Summer Special Needs Survival

Well, summer school is over and so is our week of family vacation.  Ahead of me is 33 potentially tedious and stressful days of keeping my kids occupied before school starts back up.  Although the girls still have some day camps, Josh is at home with me all day for most of those days. This morning I had a momentary flash of panic.  How am I going to keep my sanity while juggling the kids at home during this second half of summer?  How can I arm myself for the unavoidable moments of conflict, stress or boredom that are likely to present themselves?

While searching parenting websites I saw something that both amused me and gave me hope.  It's called the ABCDs of a parenting bag of tricks for avoiding a meltdown or easing a tense situation.  A for amuse, B for  bribe, C for comfort and D for distract.  

I was thinking about how I can apply this with a child with special needs.

Amuse.  It's tricky to know what will amuse Josh.  He often just starts laughing and it's hard for me to know why.  It's hard for me to share his joy or amusement because it often just seems to come from no where.  Also, Josh doesn't seem to care if someone is laughing with him.  Still I do know two things that amuse Josh to no end: a brisk breeze and music with a good strong beat.  I am going to spend more time walking with Josh along the Bay and I'm going to get out our electric fan.  Also, I need to find more clean rap stations on Pandora (if that exists).  These things are not technically "funny" but they make Josh laugh so I think it counts.

Bribe.  Motivators are often difficult to think of for kids with autism.  They are simply not motivated by the typical things that kids want like toys, money, verbal affirmation or the promise of anything that takes place more than 2 minutes from that very moment.  Over the years, I have had to get very creative to even be able to think of things to bribe Josh with.  Sugary food always works but I don't want Josh to gain a lot of weight so I need to think ahead about what else I can use to bribe Josh.  Thus far I can think of the following:  1)  watching YouTube videos of people installing shower heads,  2)  being wrapped up in the comforter on my bed and being squeezed and 3) anything having to do with playing with water.  When the kids get overtired or bored or stressed, I have been known to just march right outside and spray a big spring of water high up in the air and let my fully dressed kids get soaking wet. We call it "carwash" but it's more like kidwash.  It seems to me that they key to bribing well is to think ahead about what are things that you'd be willing to use as bribes that you won't regret rather than turning to something in the moment that you don't really want to use as a motivator.

Comfort.  Josh has always been the child who is most likely to want to snuggle.  However, lately, he's exhibiting more pre-teenish desire to be physically independent.  To my dismay, he often doesn't even want to hold my hand while crossing the street!  Sometimes, when I snuggle in with him in bed he will say, "Want Mama to go away." This is very sad for me.  Without physical touch, how do I connect with Josh?  Strangely and fortunately, there is one thing that comforts my son to no end.  Like many things in the autism world, it's a little bit weird.  Josh likes to sniff my hair.  Yes, I do take showers and I don't think my hair smells any different from anyone else's hair (I think) but, for some reason, when Josh is stressed, one of the things that comforts him the most is being able to stick his face right up to my long black ponytail and taking a couple of good whiffs.  There have been many an anxious moment at a busy Safeway where Josh suddenly announces, "Wanna smell Mama's hair!"  And if I'm desperate enough, I let him do it. Yep, right there in the middle of the grocery store or whatever.  Odd it is, and we will definitely have to fade this behavior at some point but, for now, it comforts my son and I need this tool in my pocket to survive the summer.

Distract.  In order to survive any outing with Josh, one must have lots of music. . . . car stereo, ipod with headphones, chimes on one's cell phone, whatever.  If you ever get caught in some situation without music, you must distract Josh by singing one of his favorite songs, the louder the better.  The other day we were waiting for my daughter's swim lesson to be over and Josh was just on the edge.  He started whining loudly and demanding to go home so I had to sing "Party Rock Anthem" and dance with him in circles under a tree at the park.  Instant distraction!  It bought us the 6 more minutes that I needed for Anna's lesson to finish.

Reflecting on these ABCD's made me realize that the main point of them is to take it easy and to not let the situation spiral in a negative way.  I also need to think ahead so that I can amuse, bribe, comfort, and distract myself at times so that I can keep it mellow and not buy into being too stressed out, tense or angry as we walk through the second half of summer.

What about you?  What's in your parenting bag of tricks so that you can have a good rest of the summer?

Joshua's Happy Day Poem

Spending three hours at a big pool with a mushroom shaped thing that overflows with loud falling water.

Coming home to a snack of avocados, tomatoes from Mom's garden, fresh crusty bread studded with roasted garlic, and almost a whole bag of frozen mangoes.

Realizing that I know how to sneak marshmallows from the pantry while my mom is distracted.

My tired sisters reading silently in a room where I am not.

My mom kissing me with her eyelashes causing me to laugh really hard for a long time.

The prospect of spending the rest of the afternoon in my bedroom with loud classical music and the freedom to draw showerheads and hairdryers on my magnadoodle over and over again.

Sheer summer bliss.


By Joshua Van Riesen
(as intuited by his mother)