Minor Miracles and Other Things that Keep You Going

Being fifteen has meant that Josh is sometimes aggressive.  When he wants something but can't have it, he might grab, scratch and even hit people around him.  One time when we were in our van on our way home from a family vacation trip to SeaWorld, he suddenly got really frustrated and pulled a big handful of hair from his sleeping sister who was in the row in front of him.   That was a huge bummer.  It broke a lot of trust with that sister and she, understandably, declared that she was going to take a break from helping Josh.  The other sister, also understandably, defended him, declaring that he couldn't help it because he gets frustrated just like all of us but he doesn't have the tools to manage and express his emotions. 

We've employed various strategies and behavior plans to deal with this unfortunate but somewhat expected pattern given Josh's age.  He's a teenager.  His brain is going through a normal adolescent growth process which includes hormonal and adrenaline surges.

One of the things that we do is to leave his presence and let him know that he doesn't get to be around us if he's being demanding or agitated.  Josh's wonderful respite provider, K, knew to do this the other day when Josh was becoming aggressively demanding. Apparently, Josh was yelling and grabbing K's arm.  K firmly told him that he was going to have to be in his room by himself for a while and that K was going to be in the living room.  K said that Josh yelled and made unhappy noises for a few minutes and then was quiet for about 15 minutes.

Josh came out to the living room and silently sat down next to K and then did something that shocked our experienced respite provider.  Josh said, "I'm sorry."

"It was a miracle!" K said as he recounted the experience to me later.  "You know, my colleagues and I talk about how we stay motivated for our work by the little miracles that we experience every once in a while.  This was one of them."

It's so true.  I know many adults who don't seem to know how to utter those words in the course of their lives.  How did Josh access those words and place them in a socially appropriate context?  Was he just repeating a phrase that he heard in a song or on the radio?  Maybe.  But it touched K's heart nevertheless.

As a Christian, I believe that being sorry and acknowledging one's faults/ shortcomings/ fallenness/ sins is a crucial part of opening one's heart to grace.  Yet I also know how difficult it is to speak those works of acknowledging wrong.  Sometimes my husband has to wait a good long time to receive an apology from me in a situation where we both know that I was wrong.

I know that apologizing not something that is modeled by many "adults" in this world but somehow, we all know that repentance is what makes healing and relationships possible.  Sometimes, an apology is a miracle; a sign of some amount of self-knowledge and a desire to heal.  It is a sign of grace and hope.  It is the touch of God.  What a beautiful thing to see that, in that moment with K, Josh had been given the gift of being able to say, "I'm sorry".

I wonder what our world would be like if people were able to say, "I'm sorry" just a little bit more each day.  I wonder how my life would be changed if I was just a little bit freer to say, "I'm sorry".

Swearing, Profanity, and Cursing

Today, as Josh was making himself some toast he dropped the butter knife onto the floor and immediately exclaimed, "Sh*t!"  I looked up with surprise in time to hear him say it again three times with vehemence, "Sh*t, sh*t, sh*t!"

After surprise, came amusement.  After amusement, came pride.  My son was using an interjection in a contextually appropriate way!  Way to go, buddy!

As you may know, if you have read any of my other blog posts, Josh is not someone who has a lot going on in the way of expressing language.  In fact, his spontaneous (non-prompted) language falls generally in two categories; echolalia (random echoing of things that he has heard before without appropriate meaning or contextualization) and expressing simple needs or desires ("I want toast").

To have Josh use profanity appropriately with some amount of affect was kind of awesome!  At the same time, I wondered where exactly Josh picked this up.  Was it from us?  From school? From kids on the bus?  I wish I could say that I knew for sure that he must have had this modeled for him outside of our home but, alas, I cannot.  

In our early parenting years, when blow out diapers, interrupted baby naps, and finding people spreading poop on walls were a regular part of our lives, I noticed that Josh was much more likely to echo swear words that came out of my mouth than anything else.  Perhaps this was because they were accompanied with clear and passionate emotion.  

We've been talking a lot about swearing with our (6th grade) girls recently.  We've wondered together why swearing is supposedly bad.  I hate it when people just tell you not to do something without having a reason so I've been thinking about it a bit myself;  Do you refrain from swearing just because it makes you a bad person?  Why do we have the sense that we should not swear?  True, the Bible says that we shouldn't swear but I think that means swearing as in "making oaths" or taking the Lord's name in vain.  Ok, so we don't say, "I swear to God..." or use Jesus' name in irreverent ways. But the specific question that we have sought to answer is "What exactly is wrong with using profanity?  

In her book,  Swearing Is Good For You: The Amazing Science of Bad Language, Emma Byrne writes that "Swearing, it turns out, is an incredibly useful part of our linguistic repertoire. Not only has some form of swearing existed since the earliest humans began to communicate, but it has been shown to reduce physical pain, help stroke victims recover their language, and encourage people to work together as a team."

Even the apostle Paul uses "coarse language" in Philippians 3: 8 when he says, "What is more, I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them garbage, that I may gain Christ."  That word which is here translated "garbage" is more accurately "the refuse of animals", "dung" or "poop".

All of these things may be true but my experience tells me that peppering one's language with profanity hurts relationships, especially if one is swearing at someone.  Swearing usually adds a jolt of emotion (usually negative) to a conversation or interaction that is draining, uncomfortable or painful to the listener in most situations.  There is a degrading and disrespecting quality to swearing at someone. In conflict, profanity usually amps things up rather than calming things down which is not conducive to making peace or bringing resolution.  Once you've said, "F--- you" to someone, you really can't ever unsay that.

Now that they are in middle school, my girls are discovering that there is plenty of negativity, anger and meanness in this world.  Using profanity just adds to it.  For Christians, Ephesians 4:29 advises,"Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so that your words may give grace to those who hear."  Also, the practice of self control is important to the life of someone who is wanting to emulate the God of love.  According to James 1:26 "If you think you are being religious, but can't control your tongue, you are fooling yourself, and everything you do is useless".  Another reason all this matters is that the words we use say a lot about what is in our heads. Philippians 4:8 says, "Whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things". As we think about what's right and pure, cuss words are not helpful.

Words are a very powerful part of creating the reality in which we live as human beings.  In general, we ought to try to make our words be edifying, positive, and gracious, for our own sake and for the sake of people who are hearing our words.

But, at this point, if my son wants to express himself by swearing when he drops a knife, I'm still going to smile.  

What are your thoughts about swearing?  Swearing and parenting?  Swearing and being a parent of a child with special needs?  Swearing and the middle school experience?  Swearing in a household with kids?  

Celebration for Wiping!

**Disclaimer.  This post is happy but clearly about issues of toileting.  If you are sensitive to talking about that kind of thing or if you are having lunch right now, you might want to skip this one.

Somebody say "hallelujah!"  Can I get an "amen"?  Gimme a hand clap!  Let's all whoop out loud for today my son took a poo and wiped himself all without any help from anyone.

I woke up this morning to his big boy body sneaking into our bed on my side.   A few minutes later, my husband went to the bathroom and discovered that Josh had already been there.

"Oh boy!"  Alex declared.  "Looks like someone had a poo."

This is bad news because for the past two years, Josh has been able to get himself to the bathroom to do his business but was not very amenable to wiping.  Therefore, if he went in the middle of the night, he would simply pull his pants up after pooping and go back to bed.  The result was usually not pretty.

"Is there toilet paper in the toilet?"  I asked.

"Yep, right on top."

I got up and took a look for myself, not completely believing that my husband had looked very carefully.

"Hmmm."  I thought.  "But how good of a job could he have done?"

I pulled the happy snuggler out of my bed and checked.  Actually, he had done a very good job.

Then it dawned on me.  Josh had gotten out of bed, taken himself for a nice morning poo, AND HAD WIPED --- all by himself! Today was the day!!

And there was no poo in his hair or on his clothes or on the walls.  There was no pee on the floor.  All of the toilet paper had made it into the toilet.  It had all been done correctly.  I'm not completely sure about the hand washing but I decided not to go crazy with my expectations.

Yes, he's almost fourteen but this is a day that I never thought would come.

We've been in potty training Josh for almost twelve years.  He started sitting on the little training potty at age 2.  Every step seemed to take a zillion times longer than for a typically developing child.  I remember putting night time diapers on him at age 9, worried that we would stop being able to find diapers in his size wondering, "What will we do when he is an adult?"

Josh just never seemed all that motivated.  There was no desire to be a "big boy" and to be like other kids.  He was fine just to go in his pants or bed.  He was happy to have us wipe him.

He's had accidents in every possible conceivable place: in the car, at the grocery store, at the bagel shop, in other people's homes, at church, and in the great outdoors.  He even went through a season when he would pee on electronics like DVD players, portable stereos and TVs.  Ah, what adventures we've had.  I've had moments of panic in so many different contexts as I've raised my little blessing.

How many hours have we spent working on this area?  With hope against hope, we kept trying.  We had to teach him by rote, by just doing certain things over and over and over and over and over and over and over and over and over again.  We taught him to wipe peanut butter off of his arm, then his leg just to teach him how to wipe and clean something.  We had him fold exactly 8 squares of toilet paper again and again because Josh preferred to get either two or a hundred squares at a time.  We worked on the fine motor part of wiping because, at first, it was more like spreading than wiping.  It turns out that wiping is more of a challenge than one would think when you are visually impaired, you have low muscle tone and you don't really care about things being clean.

I've had consultations from multiple autism specialists, a visual impairment specialist, several occupational therapists and a physical therapist.  I am guessing that we've had at least 15 college educated people plus a half dozen people with masters degrees working on the challenge of teaching my beloved boy to wipe his bottom.  We even went to one pediatric psychiatrist with an MD/PhD for a couple of consultations.  We paid him $300 an hour to basically show me how to make fancy charts.

Like an annoying, demanding relative who lives with you in your house, toilet training has always been with us. You just wake up and keep giving it attention every day, accepting that this is a part of your life.

But now, he's done it. My son wiped his own bum successfully all by himself.  I'm not sure if we are yet fully living in the promised land of full toileting independence but we've experienced the fruits of our determination today.   I'm proud and I'll blog it from the rooftops!  In my little special needs parenting world, today hope prevails.

Overnight Summer Camp: Drop Off

She drove an expensive looking SUV and had an accessorizing small dog.  Her shoes, hair and nails looked like they would be appropriate in a big law firm or a clothing boutique where one makes appointments to be assisted in shopping.  Everything about her said "put together" except for the expression on her face.  Her mouth and her eyes exuded the same apprehension that I felt.  She seemed stressed and distracted as she helped her daughter out of the car, which was right next to ours. The girl, blond, well groomed and about Josh's age, had Downs Syndrome.  She seemed unsure as well. They must have been first timers.

I wondered if this girl's mom was also doubting herself for signing her child up to be dropped off at this overnight respite camp for the weekend.  Did it feel wrong to her to leave her daughter who had so many needs in the hands of people who seemed to run a good program but didn't know or love her child?  Was she tempted to drive back home and protect her beloved child with the safety of known routines?

I happened to have a dog with me as well so we chatted briefly about our dogs.  We did not talk about our children.

Had we been in a different context, we probably could have talked for hours about the complexities of raising children with special needs.  We might have given each other advice about how to forge our own path when our kids are not neuro-typical.   Maybe we would have compared notes on the zillions of programs, doctors, and therapies that we've tried.

But we were not there to be friends or compatriots, we were both there to drop off our kids at overnight summer camp.  I have been taking Josh to the Saturday day program at this camp for kids with special needs every couple of months for the past year.  Josh has done well but he has never gone anywhere overnight without either Alex or me.  An overnight is a completely different thing because it involves meds and, well, sleep.  Establishing good sleep has been a long, Tolkienian journey for us.  Also, Josh is not at a place, cognitively, to understand that I would be dropping him off on Friday morning and then picking him back up on Sunday afternoon.  What if he thought that I was just leaving him there?  He has no way of asking questions like, "Where is my mom and why are we doing this thing that is so out of our routine?"

And the med thing is complicated too.  If Josh does not get one of his meds, he will eventually dehydrate and pass out and, possibly, die.  Also, if he doesn't get his artificial cortef, the "fight or flight" hormone, he could fall into seizures or, even death.

Even with these dark scenarios, I couldn't help but to smile a bit when I reached the front of the line at the nurse's check in station.  Some of the kids who had already been checked in had come with multiple bags of medications that made our stash look minuscule in comparison.  The keen and appropriate questions that the nurse asked me assured me that they knew what they were doing. Everything was neatly documented and double checked.

Josh's one-on-one buddy for the day, Andrea, was chatty, energetic and confident, like a compassionate chipmunk.  She walked us to his cabin and reminded me that there would be two staff on duty in the 20 kid cabin all through the night just in case there was a need.

Josh seemed serene and mature.  After we went over all of items in Josh's overnight bag and double checked details about his personal routines, Andrea asked Josh if he was ready to go horseback riding.  After doing a little hand flapping, Josh stood up and said, "Yes".  My heart both rose and broke a little as I drove down the hill from the camp.  Oh, man.  I hope I'm not a mess this weekend.

Sand, Saltines and Consequences

The other day I walked into Josh's room to find that he had taken an entire sleeve of saltine crackers and had crumbled them up into fine, sand-like granules all over the floor of his room.  Playing with sand has always been a favorite activity for Josh.  Particularly, he loves to watch sand falling through his fingers.   He could sit for hours lifting a handful of sand up to eye level, watching it fall, then laughing like crazy. It must be wonderful and beautiful in a way that my non-autistic brain just can't understand.  I let him do it at playgrounds and at the beach because it makes him so happy and it keeps him busy while his sisters are running around.

While I'm glad for Josh's ingenuity in recreating this beach-like scenario in his own bedroom, I have to admit that I was livid when I found the cracker crumbs covering the floor in his bedroom and his bed.  The moment I walked into his room, Josh must have known that I would be upset.  Before I could say anything, he echoed something I have said in exasperation many times, "Ohhh, sweetie!" (except with a more loving, compassionate tone than what was about to come out of my mouth).

Now, usually, when I find a shocking mess in Josh's room (in the past it was poo on the walls or coffee poured into his desk drawers) I usually get him out of the way and use my massively pumping adrenaline to power me through a vicious, dragon-mama cleaning process.  Miraculously, this time I had the presence of mind to make my son deal with the consequences of what he had chosen to do.

I took a deep breath and said, "Josh, you need to clean this up."

"No" my almost-adolescent said to me.

"Yes, Josh.  You need to vacuum."

Josh sat there silently, not looking at me but clearly waiting to see if I would really make him face the consequences of his mess.  He has never used the vacuum before because he has had a strong negative reaction to the sound of the vacuum.  Along with lawn mowers, blenders and crying babies, vacuums have always been his auditory kryptonite.

I took his hand and walked him to the garage.  I pointed to the hand held mini-vac.  He knew exactly what this meant.

After he tried the mini-vac on his carpet (which didn't work) I made Josh go get the regular big vacuum.  I'm proud to say that we cleaned that room up without my ever touching an implement of cleaning.  I just gave verbal prompts or pointed and waited for him to figure it out.  It took a loooooooooong time but he did it!

Through this experience, I realized the following things:

1)     I still do way more FOR Josh than I need to.  I do things reactively, just to get them done when I should be letting/ making Josh do things for himself.  I need to curtail my motherly impulse to do things for my child and make him learn to do it by himself.

2)     All children (even kids with special needs) need to learn that there are consequences for the messes that they make.  If we don't give them some sort of immediate consequence that they understand, they will keep making those messes.  Since Josh is going to be living with me for a lot longer than when he turns 18, I am very motivated to train him to stop making messes like this.

3)     Josh can accomplish things that I often don't imagine him being able to do.  I had no idea until this day that he could handle the auditory challenge of the vacuum noise.  I wouldn't have guessed that he could wind the cord back up onto the back of our vacuum.  Josh can figure out how to get the vacuum back to the garage and he totally knows where it goes.  I could have gone a long time without realizing these things because I always do the vacuuming in our house.

So now, there is one more chore that I can get help with around our house.  A stumbling block has been turned into a stepping stone to something new!

What to Do When You are Anxious about Your Child

Recently, I went to a seminar on the topic of "The Future of Housing for Autistic Adults".  It was free and being held about five minutes from my house so I thought, why not?  This could be helpful information just to keep in mind as I think about my eleven year old son's long term future and I've got the mental bandwidth today.  Oh, how wrong I was.

As soon as I walked into the auditorium, I realized that I had made a mistake in coming with so little emotional preparation. The anxiety covered the room like a thick layer of peanut butter.  Parents of adult individuals with disabilities had that familiar look of exhaustion and desperation.  The few people that I tried to interact with at the refreshments table seemed to be carrying a thousand pound burden with them.  As the panel began to discuss, things went from bad to worse as the panel members (governmental leaders and activists) ping ponged in their presentation from defensiveness to bitter anger about the current housing situation for adults with developmental disabilities.

I tried to concentrate on the information that I was gleaning from the handouts about the history of housing for the developmentally disabled in our state and understanding the complex system of power and bureaucratic authority in this realm.  However, I couldn't block out the disturbing and disrespectful ways that the people on the stage were interacting with one another.  I found myself upset and, more than anything, anxious.  What does this mean about Josh's future when I can no longer take care of him?  Am I going to have to deal with a broken and dysfunctional governmental system that won't help me to meet his needs?  Am I going to be able to have any service providers that I can trust?  The anxious thoughts swirled around in my head until I finally decided that I needed to get the heck out of there, spilling coffee on my neighbor as I scurried out of my row.

In my almost 12 years of being a mom, I have observed that it is very natural to struggle with anxiety now and then about things having to do with our children.  After all, we have responsibility for these creatures and, whether your child has a disability or not, they all have complex needs and challenges.  The road ahead is fraught with danger and threats.  Our children have weaknesses in their bodies, minds and character.  We worry about what this might mean for them in their future.  To some degree, anxiety causes us to engage, to think ahead and to fuel us to solve problems.  Some might say that anxiety is a blessing.

Yet there are times when we see anxiety for what it is, a way that we say to ourselves, "This dark scenario that I have for the future is too scary,  too big, too bad for anyone to handle, including God."  At the root of anxiety is a belief that God's love for us will not be powerful enough to give us a good future and that we need to be in control.  Ultimately, unchecked anxiety will not be a useful tool but it will rule over us, crushing our peace, joy, and trust for God and other people.  Anxiety feeds on itself and on our anxious behaviors.  It will make  our minds unable to rest, our souls unable to worship freely and our bodies unable to function properly.

Therefore, as a veteran in the battle against anxiety, I would like to share with you some wisdom about how to not let anxiety rule your life.  When you realize that you are gripped by a dark scenario about your (or your child's) future that does not include the hope of God, I suggest the following:

1.     Talk to someone.  Tell someone exactly what is making you anxious.   Don't rehearse it over and over.  Don't chew on it like cud.  Just get it out of the warm, moist environment of your own head and let the antiseptic power of fresh air and sunlight start to do it's job on your anxiety.  If you don't have someone to talk to, journal it out.  Just get it out.

2.     Pray.  It doesn't have to be complicated.  I like Anne Lamott's suggested prayer, "Help!"  If you are too anxious to pray, ask someone else to pray for you.  At the root of prayer is the declaration that we need help and that we are not in control.  This is an excellent place to start.

3.     Give it over to God.  When I am feeling anxious, I often pray with my hands open as a sign that I am giving to God the heavy things that I am holding.  I also find it helpful to name the thing that is burdening me and praying out loud, "God, I give you my fear of ____" or "I want to trust you with ____".  It's helpful to renounce our perceived control over the uncontrollable things of life and to hand it over to God in a specific way.  Another word for this process is "repentance".  This word does not have to do with "burning in hell" as much as "letting go".

4.     Repeat.  Any significant spiritual and emotional process is usually not "one and done" but rather a process of continually relinquishing.  If the anxiety comes back, repeat steps 1-3.

5.    Remember, your child belongs to God.  Go.  Look at your child or a picture of your child.  This gorgeous person was made by God and is, right now, being parented by God.  His love for your child eclipses your own. Your job is to do your best to nurture and provide for this child but you will have limitations . . . big, fat limitations.  Your task is to do the best job that you can do while being a human being.  God gets this.

6.    Commit to living a non-anxious life as much as you can.  Take time to rest.  Take time out of the swirl of life to make simple plans for moving forward.  Feed the your soul with messages of God's love for you.  Today, I did this by cutting some roses from my garden and putting it on my desk just for me.

7.     Locate areas of avoidance and seek out help and accountability.  I find that avoidance and anxiety are dance partners.  For example, I have an ugly, mean ol' stack of papers on my desk right now that I am avoiding (out of the anxiety that I have about them) yet it's presence daily fuels my anxiety.  I have shared about this stack of papers with two friends who are praying for me and supporting me as I try to clean out patterns of avoidance in my life.  I'm taking one step at a time and it's working.

8.   If anxiety is having a long term, immobilizing grip on your life you may need to get help from a professional like your doctor, a therapist or a pastor/ leader of your spiritual community.  If you find that anxiety is affecting your sleep, eating, relationships over time please do not be afraid to address deeper needs of your life with more significant resources.

By the way, I am highly aware that battling anxiety about our children, our lives, our future, anything is not a simple eight step process. It is truly a battle.  But it's a worthy fight.  Don't give in to anxiety. It's a rabbit hole of darkness and you don't want to live there.  We were not meant created to walk in anxiety but in dependent trust in God.  He cares about you and He cares about your children. He has a good future for your life if you can trust in Him with it.

Finally, I would like to remind you that anxiety is not love.  One mom shared with me that after her child got very ill, she stopped sleeping for days embracing vigilance as a sign of her love for her child to the point where she sacrificed her own health.  God spoke to her that she does not need to prove her love for her child or to prove that she's a great mom by giving herself to hyper-vigilant worry.   I've known and prayed for many children who have been very adversely affected by the leakage of their parents' burdensome anxiety.  We don't love our children by being anxious. We love them by trying to walk in spiritual health and freedom.

How are you doing as you battle anxiety in your life?  What are you finding to be helpful?

Mama's a Liar

The other day, Josh came home with a hankering for dried mangoes. He was  determined to find our massive Costco sized bag of sticky, sugary dried fruit in our cupboard and was requesting my help assertively and repetitively.  "Want dried mango. Want dried mango.  Want dried mango."  I think he must have said it around 20 times.

I replied, "Josh, it's all gone.  No more dried mango.  Here, let me cut you an apple."

"Want dried mango."  Josh said one last time for good measure.

Because Josh is a pretty compliant kid, he sat down at the kitchen table and started working on the apple slices.  I went into the den to get something and by the time I came back to our kitchen, I found that Josh had been rummaging through our cupboard with the snacks in it.  Despite having intellectual disability and visual impairment, Josh found the one little Tupperware container that had dried mangoes in it amidst the chaotic piles of little filled Tupperware which I had prepped to be thrown into lunch boxes.

Observing what had happened, my amused, sarcastic husband said, "Josh, your Mama's a liar."

Much to my chagrin, periodically throughout the next couple of days, Josh would randomly say, "Mama's a liar.  Mama's a liar."

I'm not sure what this means.  It could just be that he likes the sound of that phrase.  He used to walk around saying "Wocket in your pocket" over and over again.  Or he has certain phrases that he makes up like "Wysssse gooooch" which he likes to repeat softly to himself.   Who knows why?

A small part of me wonders if Josh is letting me know that I can't fool him as much as I think I can.  It's like he's saying, "I may have intellectual disability, Mom, but I'm not stupid."

It's easy to think that you can fool him because he's not the most aware kid on this planet.  You give him head phones and a magnadoodle and it appears that the world could end and he'd still be happy, drawing a shower head or a hairdryer over and over again.

I actually appreciate this about him on some days.  Unlike certain other highly verbal children in our household, Josh is usually pretty relaxing to be around.  Alex and I can have adult conversations around Josh without being bombarded with questions every five seconds.  Sometimes it's kind of nice being around a child who is firmly, and usually, happily in his own world.

But I am realizing that this doesn't mean that I can cut corners and tell Josh that we don't have something when we actually do.  Josh is becoming a person who has more drive and initiative than I have ever imagined.  With things that matter to him, he's not just going to roll over and accept what I say but search things out for himself.  Given the reality that Josh is eleven years old, this seems appropriate and even beautiful.  In my heart of hearts, I don't mind this at all.

Going to See Movies with Josh

Josh has seen exactly three movies in a theatre in his life. The first time was about 2 years ago when we saw The Muppets.  We brought an extra adult with us and we armed ourselves with a very expensive amount of popcorn and other snacks.  Still, Josh was overwhelmed and melted down.   Alex had to take him out to the lobby and even go for a long walk in the parking lot, missing most of the movie.  

The second time was about 6 months ago when I took the girls, Josh, and a trained autism therapist to a  viewing of the movie Planes.  Our local theatre hosts monthly "sensory friendly" viewings of films where the auditoriums have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing.  It felt like a big risk to try it again but, what the heck, we live in America and kids in America go see movies.  Alex and I love movies and wouldn't it be great to be able to go to them with our whole family sometime?  I really wanted to try it again.  It felt like we were "in training" for Josh to be able to gain the sensory muscles to go see a movie.  

Shockingly, it was a great success.  Josh not only sat through the entire film but he was happy and "sang" along and clapped at various times as well.  He ate a huge bag of popcorn during the show but that was fine with me.  He actually was more calm than his two sisters, who sat on either side of me, gripping one of my arms with ferocious desperation and breaking down into sobs because of the intensity of the surround sound music and some of the tension points of the story.  They pulled it together well afterwards and now they claim that they loved Planes and talk about it fondly, as if seeing it had been a wholly pleasant experience for them.

My girls really wanted to see the new Disney movie, Frozen, during this holiday break.  At first, I planned to leave Josh at home with his dad, not wanting to deal with the energy that it takes to plan to attend something with Josh.  But at the last minute, we decided to just go for it and see it as a whole family. My niece and my mom came with us so I felt fortified in terms of adult resources in case anything went wrong.

At first, Josh was clearly anxious.  He did not want to go in and, once we sat down, held my hand tightly as if he was afraid that I might leave him alone in the dark theatre.  But once the movie started, Josh started to relax. He clearly enjoyed the musical numbers within the film (there were many).  He started to smile and giggle and remained relaxed through out the entire show.  He vocalized and clapped a little bit but was willing to quiet down quickly at my whispered encouragements.  I also handed him a tangerine every time he started talking and he was happily distracted.  Strangely, he declined to have any popcorn today.  At the end, he didn't want to leave until the credits (and music that accompanied the credits) were over.  

My son has come so far in his abilities to manage sensory input.  As a younger child, the world seemed to be a place full of auditory and visual threats.  Josh succumbed to panic, tantrums, and melt downs so much more than he does now.  I am so proud of him and I want the world to know that Josh is maturing, even within his own autistic world.  It seems odd to call "going to the movies" a risk but, for us, it is.  And if we had never taken this risk today, we would never know how Josh is growing up into a guy who can handle so much more than I ever imagined.  

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.  

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.

Lemon Tree

I have a love/hate relationship with the lemon tree in my backyard.  Years ago, when we first moved into our house, my sister bought me a miniature lemon tree in a planter at Home Depot as a housewarming gift.  I was very excited because I live in a part of the county where citrus trees grow quite well.  When you go walking around our neighborhood, you will walk past many, many fragrant and beautiful trees full of lemons, limes, and other citrus fruits.

I planted this tree, fertilized it and watered it regularly.  I can see it from my kitchen window so I often looked at it and looked forward to never buying lemons again.

Alas, it refused to produce fruit.  In the past 6 years of having this tree, it has only produced around 5 lemons.  And these lemons were dry and not very juicy!  I read up on the care and feeding of lemon trees.  I bought more fertilizer.  I even talked to the thing.  Still no fruit.

I began to resent this tree.  Why are you taking up my time and energy?  I wanted you to be productive, to save me some money over time.  I even thought I would be able to share of your abundance with my friends and neighbors but no!  This year, it looked like it was going to be another no-fuit year.  I thought about how Jesus cursed the fig tree for not having fruit.  I thought about doing the same.  Or at least getting rid of it and trying again with another type of citrus.

One day, I looked out my window and this is what I saw.  The tree offered me this one ripe lemon like a mocking gift or, perhaps, as a peace offering.

I've been thinking about this lemon and what it might represent.  Like most things of mystery in my life,  it made me think of my son.  He is the other thing that I spend so much energy nurturing, hoping for good fruit.  And in some ways, he is a "fruitful vine".  He produces laughs and smiles and happy moments aplenty.  He adds to our family in and our community in ways that are difficult to quantify.  However, in some ways, he leaves me waiting for the fruit that I hope for and expect.  The normal ways that we expect a child to be productive, in terms of educations, learned skills and capabilities are slow in coming for Josh.  It has taken Josh 6 years of public education to be able to spell his first name.  Like my lemon tree, it takes Josh much, much more time to do what he's supposed to do.

Ultimately, I don't have to accept that from my backyard lemon tree.  At some point, it may be time to decide that this tree needs to produce or else.  However, although it hasn't given me many lemons, it has given me a picture of growth that is slow and surprising. It has been a parable to me, instructing me in the mysterious and uncontrollable ways of growth.  You can't make growth happen.  You can just be a part of it and see what you are given.

Growing Up, Growing Older

I still call him "Baby" even though he's ten years old and almost a hundred pounds. I am guessing that every mother has, inside of her, a sense that each of her children are her babies.  We've known them and cared for them since they were in diapers.  We've known every part of their growing up process.

Like everyone's babies, mine is certainly growing up (or at least he's certainly growing older and getting bigger).  And like most moms, watching my baby grow up is bittersweet.  He doesn't always want me to snuggle with him now and sometimes he prefers to be alone than being with me.  I marvel at how quickly these years have gone by and how he's suddenly a fifth grader!  Next year he'll be in middle school (albiet in a special needs classroom).  His childhood seems to be speeding by at lightning speed.  To watch this happen feels like a sweet pleasure mixed with pride and abject fear of the future.

The difference between my ten year old and other people's ten year olds is that mine still can't talk much or write his name yet.  He has not yet learned basic safety things such as our phone number or address and is basically still a person who needs one to one supervision at all times.

One challenge that I have is what to do in terms of going to the bathroom when we are outside of our home.  Although Josh can do most of the steps of a trip to the bathroom himself, he can't always make his way around a new bathroom.  Also, without prompts, he can get stuck on parts of the process.  For example, he would probably wash his hands for a half and hour if sometime didn't tell him to move on.  I am starting to feel the tension of bringing him into the ladies room with me when we are at doctors visits or out shopping or at church.  People are often confused and even uncomfortable with having a bigger kid in the ladies room.  Some places, such as the YMCA, posts signs saying that boys who are over 7 years old, are not allowed in the women's dressing rooms or restrooms.  Thankfully, most people are quite understanding when they see that Josh is not a typical child (and his noises or flapping usually make it clear to anyone who is paying any attention.)

I experienced this problem with surreal clarity and painfulness on Christmas Eve.  There was no childcare or a buddy program at our church on Christmas Eve as it was a "family service".  Josh declared in the middle of the service that he had to go to the bathroom so I left my girls in the care of a friend and took him .  My husband could not help because he is one of the pastors of our church and he was giving the Christmas Eve homily.  Personally, I think that being in the room with so many people was starting to make Josh anxious and he knows that the bathroom is a place  where he can take a break and be in a more "safe" place.

Now, our church meets in a community center and so there are often people around who are not necessarily there for church functions.  This day, there happened to be a homeless woman who had set up her belongings in a corner of the warm bathroom.  She did not seem to be completely mentally balanced because she immediately took great and loud offense that I had brought a "man" into the bathroom.  "What if I had taken off my clothes?!" she asked, seething with anger.  This struck me as a little funny because this woman had tied about 20 plastic bags to various parts of her clothing.  I figured that it would take her at least a half an hour to take off her "clothes".

I tried to explain that Josh has special needs and he can't go to the bathroom himself.  "Besides," I told her with an attempt at a winsome smile, "He's visually impaired.  He can't really see you all that well, anyhow."  This did not win her over.  She continued with a barrage of angry words punctuated with lots of swearing.

We could not leave because Josh, who seemed glad to get out of the room with lots of people in it, was now happy to be in a stall and insisting that he had to poo.  Then he started laughing and clapping and saying, "Wanna go poo poo on the potty" over and over again.  The woman continued with her verbal barrage of swearing and, in the background, I could hear my husband's sermon as he talked about the true meaning of Christmas or something like that.  It was, to say the least, an odd moment.

All I could think about was 1)  What am I going to do to get out of this situation? and 2)  We have got to get this kid more independent living skills.  Finally, I convinced Josh that we were done and we high tailed it out of there.

This situation underscored for me the lesson that there are a lot of things that I can't control.  I can't control the fact that my baby is growing up.  I can't control when Josh has to go to the bathroom.  I can't control his anxiety.  I can't control how other people respond to Josh.  AND I can't control how quickly his life skills develop.  What I can control is my own response to all of these things.  I can either live in anxiety about the problems that will come as Josh grows older or I can just take each situation as they come.  I can either be angry right back at people who can't deal well with Josh or I can try to have a sense of humor about it.  Difficult and surreal moments are a part of the journey.  I can let them get to me or I can laugh about them and learn from them.