Mother/Son Vacation

I said that we would just check it out, just take a quick look because by the time we had checked into the hotel and settled into our room, it was late afternoon and much too chilly to swim.  It was even colder than the weather report predicted and I had only brought thin sweatshirts for each of us.  But Josh kept saying, "Wanna go home" so I needed to put some more motivators on the table.  I wanted him to be ok with this quick little mother/son trip that I had brought him on.  So instead of going straight to the car to go get some dinner, we made a brief little side trip to just go look at the outdoor pool and hot tub area.

We rounded the corner and I used my key card to get us into the tiny fenced in area where the pool and little hot tub was. Josh took a good look around and, as he took it in, his visage completely changed, as if he was being greeted by a long lost friend.  The silly-sweet smile that oozed across his face said, "I know what this is! This is something I like!"

When I told him that he could dip a toe into the hot tub, he flung off his Crocs off and plopped his foot into the bathtub-like water.  I could tell by his body language that we weren't going to go straight to dinner.  

"Wanna go in?" It was half question and half declaration.  This kid wanted to go in the hot tub, cold windy weather be damned.  He walked right in with his shorts and underwear on.  I barely had time to take off his shirt and sweatshirt.  Josh spent the next hour enjoying the hot tub.  As he usually does when he's happy, he swing his arms around, sang little bits of songs, and exclaimed words which he made up like "Wash-weh!" and "stuck-tidit".

Well, this is why I decided to take three days and two nights away with Josh.  This week is Josh's spring break but not his sisters'.  Since I am on sabbatical, I somehow came up with the idea of having a mother/son getaway somewhere with a pool.  I chose Salinas because I have been wanting to visit the National Steinbeck Museum which is there and it would be easy to find a decently priced hotel where Josh could swim and enjoy water.

On our second day here we partook in the free breakfast and made our way to the Steinbeck Museum.  I had some amount of trepidation knowing that there was a wide spectrum of ways that this could turn out spanning from massive meltdown to going pretty ok.  After all these years, I know that taking Josh out to public places is always a risk but it's a risk that I am willing to take now and then.  Yes, there is always the chance that he will be walking along and suddenly decide to take a pee into a bush or suddenly get upset but I don't want Josh to live in his room all the time when he's not at school.  And I don't want to feel like I can never do anything interesting just because I have Josh in my life.  

The visit to the museum turned out to be surprisingly successful.  Josh spent a good part of the time by himself in a small, fenced in outdoor area within the museum with his headphones, Ipod and his Magnadoodle.  I would take in one or two exhibits and then walk back to check in on him.  He was fine the whole time, sometimes taking a few moments to walk in circles and feel the breeze on his face.  For the last 30 minutes, I made Josh walk through the exhibit room with me which he was less than thrilled about but was willing to do.  

After lunch Josh and I went down to the pool area where Josh elected to go into the big pool this time and I need to tell you that Josh was happy THE WHOLE TIME!  As parents, our children's joy catalyses our own joy.  It's not the only thing that we want for them but when our kids are filled with happiness and contentment, it touches a deep, central part of our hearts.  We want our kids to be able to enjoy the gifts that life (and we) give to them.  We want them to be happy.  

I find myself wondering if God feels this way about us.  I wonder if God, as a heavenly parent, wants me to enjoy my life, the world, and each moment as much as Josh does.  Does it give God joy when I savor some part of my day or a beautiful piece of writing or a perfect Korean meal? Does my smile make God smile? Is my laughter music to God's ears?  If so, I am going to try to let myself enjoy the things that I enjoy more.  I think of how freely and unselfconsciously Josh enjoys the pool and I will try to be like him.  I hope that my joy, and my grateful enjoyment of God's good gifts to me, is as pleasing to God as Josh's joy is to me.  

For nearly 4 hours I breathed in my son's sweet joy.  He swam around, jumped up and down, flapped his arms, floated on his back and stood quietly in the water with his eyes closed and face to the sky.  Every time I asked him if we should go back up to our hotel room he vehemently declared, "No!"  Finally I had to bribe him to come out with a piece of chocolate that I found in my purse.  We made our way upstairs to discover that Josh thought that the bathtub in our room was just the coolest.  He took a bath for another hour and half.  

Happy as a Clam

 

When we first arrived at our friends' beach house I was already a mess.  I was afraid that our unruly, chaotic mop of a dog would pee in their house.  I kept thinking about all of the things which I had forgotten to pack.  It was hot.  I was already tired.  Of course, the biggest worry, as always, was about how Josh would do.  This was a place where we had never stayed before and Josh is always stressed by new places.  

We always let Josh stay in the car as long as possible while the rest of us unpack the car and get situated in any new place.  Alex brought all of Josh's accoutrements into the room which he would get to stay in all by himself: his stereo, his Ipad, his magnadoodle toy.  When there was nothing left to unpack I went out to the van to coax Josh to come in.  I can't remember if I had to bribe him with a snack . . . probably yes.  

I feel bad saying this but, with our family, going on any trip is a big fat risk.  We're definitely had our share of family trips that have spectacularly NOT gone well.  For the past twelve years, we have had the most success vacationing at our dear friends' lake cabin in the mountains.  Josh gets to stay in the basement family room where it's quiet and he gets his own space.  He loves it and he knows what to expect.  If he hears us mentioning "the lake cabin" Josh will start saying "wanna go to the lake cabin" over and over again.  But this year our friends are in the midst of a remodeling project so it wasn't an option.  Also, we happen to be in the middle of a pandemic this summer so we assumed that we would just stay put.  Just when being in our house was going to drive us fully bonkers, some other friends reached out asking if we might want to stay at their beach place about an hour away.  Uh, yeah!

Today is our third day here and we finally felt ready to take the risk to take Josh down the mini-hike down to the beach.  The last time we took Josh to the beach, he didn't like it and he wanted to go home right away, which was a bummer for the rest of us.  But the beauty of this place was just so ridiculous that we had to try again.  Hope went down earlier than the rest of us and she texted me, "MOM! THERE ARE DOLPHINS!"  I looked out of the main bedroom's window and, sure enough, I could see a pod of dolphins frolicking in the water below not far from the shore.  

That was it.  I summoned the energy to pack up all of our beach stuff and drag Josh down the path and three sets of very steep steps down to the beach.  He was scared but he held tight to the guard rail and my t-shirt and carefully headed down.  

It was pretty much love at first sight.  Josh plopped himself down in the wet sand and, for the next two hours, delighted in the sensory input of the cool waves hitting his body.  He was like a little brown lighthouse of joy, waving his arms in the air, laughing loudly and saying some of his favorite words;  "feelings!", "abortion!", "cocaine!", "train!".  Several people walked by and gave us a smile.  

Alex and I took turns closely supervising him in the water while admiring how well the girls had taken to boogie boarding.  We each got some time to ourselves under the umbrella to read as well.  

To top it all off, I quickly found that if I dug into the wet sand a little bit with my feet, it was not too hard to find clams!  Be still my immigrant heart!  Not only was this day going so well but was I going to have FREE seafood to cook for dinner as well?  This is crazy!  

Ok.  Not everything in a given day has to be perfect in order for a day to be wonderful.  It turned out that there is a quarantine on shellfish in this area because of an abundance of a certain marine bio-toxin so we couldn't eat the clams.  Also, one of my supposedly independent teens elected to not apply sunscreen prior to swimming in the ocean for hours so some amount of wailing about crispy skin ensued.  But we all agreed that the day had been very good and we were filled with gladness and gratitude.  

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".

Why I am Grateful for Josh Today

While on a pre-Thanksgiving walk with me yesterday morning, Josh began to sing a muffled version of "I Don't Need Anything But You" from the Annie soundtrack.  He knows the song because his sisters uploaded it on his ipad and he listens to all of the music on that device constantly.   I decided to join in and we sang a silly little "Josh style" duet.  I would sing most of the line and he would sing the last couple of words.

 It went like this:

Susan:  "Together at..."

Josh:  "last."

Susan:  "Together for..."

Josh:  "ever."

Susan:   "We're tyin' a knot, they never can..."

Josh:  "sever."

Susan:  "I don't need sunshine now to turn my skies to..."

Josh:  "blue."

Susan:   "I don't need anything but..."

Josh:  "you."  

Josh had no affect in his voice as he "sang" but I could tell that he was having a good time. We walked for a while like that in the woods near the little town where we have come for a few days of Thanksgiving vacation.  Josh vacillated between wanting to sing and just stopping to clap for a while, making happy vocalizations.  No one was around so just let him do whatever he wanted.  He seemed extraordinarily content.

Inspired by my son's joy and detached from the many needs of my family, my house and my life, I began to count the things that I am grateful for in my son's life.  Here are a few of them:

1.     I am grateful to be able to go on a walk with Josh.  When we were first told of his diagnosis, our doctor told us that it was questionable whether he'd be able to walk at all in his life.

2.     I am grateful for how far Josh has come in his behavior management.  He rarely bites himself or others anymore.  He has outgrown his tantrums and has only cried a handful of times at school this year.   This is amazing given where we have come from.

3.     I am grateful for the variety of foods which Josh is able to eat.  So many kids with special needs also have dietary limitations or allergies.  Josh loves to eat a huge variety of fresh fruits and vegetables.  He is my my most flexible child when it comes to food.  

4.     We have come so far in Josh's toilet training.  I'd say that we are 97% there and if we could just get him to commit to a higher level of quality control with wiping, we'd be done!  It's taken about 10 years but this is not easy stuff for a kid like Josh and we've had to divide it up into about 40 different steps which each had to be mastered.  I'm also so grateful for the dozens of therapists, aides and specialists who have helped us in his process of learning.

5.     I'm grateful for the parable that Josh is in many so people's lives.  Tim Shriver, the CEO of the Special Olympics and the nephew of President John F. Kennedy said of his intellectually disabled aunt, Rosemary Kennedy, "She walked in the house and she didn't have to do anything. Everybody loved her," Shriver recalls. "And you didn't have to do anything for her. She'd sit with you and talk to you. Play games. Swim. Walk. No earned love."   Like many people with intellectual disabilities,  Josh is my constant reminder of the intrinsic worthiness of any person.  It's the love and touch of God which gives us value, not what we can do or accomplish.  Therefore, we are free to rest, just be together and work hard since our identity is wrapped up in none of these.  

Have you taken a few moments in the past couple of days to reflect upon the things that you are most grateful for?  If not, I strongly suggest that you take time to take a slow walk by yourself or with someone that you love.  It's a great gift in making space to savor the good things of your life and to give God some applause.

How Josh Helped us to Interpret the Bible

Last week our family went for our annual trip to a friend's cabin in the mountains. Together with another family of five, we spent the week laying around, cooking good food, exploring streams and having daily group morning devotional times (among many other wonderful activities).

We've known this family for decades and have vacationed with them for the past five years in a row.  I really appreciate that the three kids of this other family are all very tenderhearted toward Josh and try to help him out whenever they can.  One evening we had a discussion about what it's been like for them to grow up with Josh as a "cousin" and they had insightful things to say about how being in relationship with Josh has made them more sensitive to others, especially those who have special needs.

One morning, the mom of the other family led us in an inductive Bible discussion of Ephesians 4:26-32.  Our kids range from age 7-15 and we have just barely become a group that could have a brief discussion of the Bible together.  It was a bold decision to try to have this kind of devotional time with this crew, especially with my wiggly troupe.  It went surprisingly well.

The part in the middle of the section goes like this:

"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.  And do not grieve the Holy Spirit of God, with which you were marked with a seal for the day of redemption"

One of the kids asked, "What does it mean to grieve the Holy Spirit?"  After we defined what it means to "grieve", we wrestled with the question of why it might make God sad when we don't treat each other very well.  Why does He care?  What might that feel like to God?

Finally, my husband came up with an illustration that made a big impact on everyone.  "What if someone came up to Josh in front of you and said, 'Shut up, you stupid retard' ?  How would that make you feel?"

Alex barely got his question out of his mouth before all of the children (except Josh, who was listening to music on headphones) gasped with furrow-browed, open-mouthed, passionate indignation. Hurt and a sense of injustice flashed on each young face.

"Why would anyone say that?!"

"I would want to beat them up."

"That would make me really, really sad and mad."

We had had a conversation earlier in the week about the "r-word" and about how it's inappropriate but that some people use it in reference to kids like Josh.  We were all aware of how hurtful words like that are.  (Actually, we had an interaction similar to the one Alex described when we were at the library the other day.)

Alex explained that how we felt was sort of like how God feels when we treat each other badly and refuse to reconcile with one another.  It grieves Him.  Just like we all want to protect Josh and make sure that he gets treated well, God feels that way about every one of us.

I was struck by the emotional and theological richness of the moment.  Because we all have relationship with Josh, a vulnerable person with many, many needs, we have a deeper understanding of what humanity is like before God and about how God feels about the brokenness of human relationships.

The emotional impact of the illustration made the truth of the scripture sink in.  My girls have mentioned this scripture to me several times since we've returned home, noting that they want to be better at not being angry at each other because they don't want to grieve God.  They asked that I print it out so they could put it up on the walls next to their beds.

Even though Josh was listening to music on Pandora on my iphone during the whole devotional time that morning,  I treasure how he was (and is) involved in expanding our understanding of God just by being who he is.

Disney Magic Interrupted

I've noticed that the magic moments in life are only magical if they are framed and taken out of the greater context.  For example, this photo of my daughter Hope and me captures a truly "Disneyland magical moment".  Leaving sister Anna and Daddy on Main Street to nab a good viewing spot for fireworks, Hope and I raced to the back of Fantasyland to take in the "It's a Small World" ride.  The day we had chosen to be at Disneyland happened to be the first day of the month-and-half long holiday season in the Magic Kingdom so Small World was decked out in holiday lights and featured some special outside shows while you wait.  Our expected 25 minute wait was cut short when they opened a new loading line, allowing us to get right onto the coveted front seats after standing in line for only about 5 minutes. Yes!  Hope had already been on this ride earlier in the day with her dad so her fear of the unknown had melted away and her enjoyment of the ride was exponentially greater.  She jabbered on throughout the whole time guiding me through all of her favorite parts.  (It turned out that every room was her favorite room.)  As we snuggled together and took in the sights, Hope sighed and said, "I love you, Mommy."  It was a scene straight out of parenting heaven or a Disney advertisement.

Soon after we exited Small World, the fireworks started.  We watched them from where we were, which was not a bad location, although not the supremely desired "right in front of Sleeping Beauty's castle" spot.  It was Hope's first time actually seeing live fireworks as we've never let our kids stay up long enough to watch them in July.  They were pretty marvelous to behold, filling us with a sense of awe, beauty, power and just the right amount of fear, sort of like a really good experience of God.  As the fireworks show came to an end, the Small World mall starts to "snow" little snowflakes made of some sort of soap-like substance as the song "White Christmas" and the sound of jingle bells were heard throughout the park.  Hope was absolutely elated, her delight expressing itself in a twirly dance as she caught the little white bits of joy her hands.

Magical, right?

Yes, except for the fact that a few hours before this magic moment, I almost threw up in the midst of an  everlasting, claustrophobic line of people at the Jungle Cruise attraction and had to lay on a bench on Main Street in the fetal position for 2 hours while Alex and the girls went around together.  Alex, Hope, and Anna had had a bout of stomach flu or food poisoning a few days before our trip and, while it looked like they had completely recovered (enough to down several hand dipped corn dogs each), I feared that maybe it was my turn to have a tummy problem.

Disneyland is not for the faint of heart.  It seems that moments of irritation, being overwhelmed and snapping at the ones you love are givens at some point in a long day in the Magic Kingdom.  During my fetal position rest time, I overheard many a parent completely losing it on their beloved children.  I heard many a child having complete thermonuclear meltdowns even though they had been given $15 balloons to hold and larger than life sugar-based snacks.  Disneyland may be called "the happiest place on earth" but it's also a place where the dark side of the human heart leeks out at some point or another.  We were not immune to that reality.

And the clincher was getting a text message while I was watching Hope dance in the manufactured snow from Josh's caregiver (back at home) that Josh was spiking a fever.  Subsequent texts and phone calls confirmed that not only did he have a fever but he was throwing up as well.  As I've written in previous blogposts, this can mean emergency hospitalization for Josh if he is not able to keep his meds down.  I immediately knew that it was not an option to let my carefully organized "Josh care team" deal with this level of complexity without me there so I caught the first flight that I could and returned home the next morning.  I left Alex to shepherd the girls through the second day of our Disney adventure.

A part of me is tempted to say to God, "Really?  It seemed like such a good thing to take this vacation with just the girls.  I thought through this trip from about a billion angles.  I spent about 50 hours prepping for this trip.  There are seven pages of instructions that I typed out and posted on my fridge for people to use as they take care of Josh.  Of all of the days that Josh could have a fever and throw up, he has to do it at the end of our first of two days at Disneyland?"

But you know what helped my heart?  I came home to this.

My deep thought of the day is that if you want to experience joy and wonder, you can't expect it to come on a full day of complete perfection and happiness.  You have to accept that it will be a 3-7 minute snapshot in the midst of the realities of normal life.  It will be a twirly dance in magical snow an hour after laying on a bench in the fetal position and a few minutes before hearing that your other child is seriously ill and you need to get your butt onto the next flight home.  That's how most moments of joy comes in this world, in small packages.  If you focus on the negative stuff, you will never savor the good stuff.

I don't know the full meaning of why our vacation went the way it did but I do know this:  I love this boy and I would do anything for him.  I'm glad that I came home and we are having a quiet, restful day together.  The fever and vomiting are gone but he's clearly tired and needy.  I'm feeling tired and needy too and I'm not sure I would have been able to keep up with Alex and the girls on this second day given where my stomach is at.  Snuggling with Josh on my bed is also a magic moment and it's the one I've been given for now.

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.

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?

A Perfect Summer Day

This summer has been a tough one for Joshua and his Mama. Top 5 things that Joshua has been up to that has driven his mom crazy are:

1. So much crying for apparent reasons and no apparent reason

2. Eating lots of non-food items like rubber stamps, video tape (see previous post), toilet paper, entire pages of beloved books. He has also gotten into eating pseudo-food items that are still completely inappropriate like previously chewed gum that has been stuck to the side of a public garbage can. I'm not kidding.

3. Demanding random videos that I rented from the library many months ago. He would ask for them over and over again for hours. "Want Baby Galileo. Want Baby Galileo. Want Baby Galileo"

4. Pouring liquids into strange places (like my coffee into his toy boxes in his room). Pouring water onto floors, etc.

5. Intentionally peeing on the floor (or onto piles of clothes) in his room. This one made me the most crazy. One time he peed on a TV/VCR that was on. He could have electrocuted himself! We were way beyond this in his potty training journey but suddenly, he went way backward with this behavior.

So, yes. Difficult summer.

But I have to tell you about one day that was wonderful.

A few weeks ago, we were at a friend's cabin in the mountains for a week. One day, we rented a boat and spent the good part of a day on a lake. We explored various places around the lake, went hiking, and soaked up the glorious sun.

Of course, I was worried about how Josh would be. There's not really many places to escape if he's having a hard time on a boat. But Josh loved it. The hum and vibrations of the motor, the sound of the water, the slightly cool breeze; these things were pure sensory pleasure for Josh.

A friend, the dad of the other family who was with us, decided that this was the day to introduce Josh to hiking. Josh did shockingly well with it. We couldn't believe how hard he worked to climb up rocks and walk up hills. Josh even jumped off of a rock into the lake (with some help). He swam. He ate watermelon quietly. He even told me when he needed to go to the bathroom.

And, as everyone knows, if Josh is happy, Mom is happy. I was so happy. How I want this kid to be happy. . . from the bottom of my soul. I know that I can't control this. I have little power to make this happen. But when it does, it's so wonderful. A professor of mine once told me that "a shared joy is a double joy". I want to share with the world about one perfect summer day!