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.  

Morning Clapping

I have a seventeen year old son who wakes up happy on most mornings.  How's THAT for counting your blessings?  This is not to say that he's happy all the time.  When he's unhappy, you'll know it because he feels free to cry, yell and throw things.  But the kid loves to be alive most mornings.

For example, today is Saturday and, as we did not have anything going on in the morning, I slept in past our usual early morning family wake up time.  The first thing that I hear is the sound of jubilant clapping.  Joshua is drawing some of his favorite things on his magnadoodle toy (such as hairdryers and showerheads), putting the magnetic pen down and then clapping.  He can do this for hours.

Eventually he comes out to the kitchen and starts rummaging around for something to eat.  Without supervision his greatest interest, of course, is to find cookies.  Josh's sisters have been on a baking kick for quite a while now so he knows that they often hide containers full of baked goodies in various places in the kitchen, ostensibly to keep him from finding and eating them.  But, though he may have intellectual disability, he's not stupid so he can usually find any hidden sweets or baked goods.  Given further unsupervised time, he will eat the whole thing, leaving prodigious amounts of crumbs on the floor for our dog to clean up.

Alex even put a "baby proofing" clip on one cabinet in an attempt to keep Josh from accessing it but he figured out how to work it pretty quickly.  Finally, we ended up having to buy a plastic "lock box" to keep chips and granola bars in so that we could have some secure location in the kitchen.  Josh has not figured out how to open this yet but the problem is that the rest of us often forget to lock it up so Josh knows to check it first when he's hankering for a chocolate chip breakfast bar.

Hearing Josh in the kitchen is what finally got me out of bed.  I offered to make him some toast and he grinned broadly.

"Want butter on it," he said.

Josh also really enjoys what we call "frozen yogurt".  This is the leftovers of homemade fruit smoothies frozen into ice cube trays.  He won't eat it in liquid form but once frozen, he loves it.  He treats each cube like a little delectable piece of luxury, nibbling first on the edges then taking slightly larger bites, smiling as he does.

The house is really quiet this morning as Josh's sisters are away on a youth retreat.  I am listening to my son making happy noises while eating his breakfast.  Every once in a while, he will take a break from his voracious eating and express his joy through a few seconds of vigorous clapping.  I know that he might just be seeking sensory input.  But sometimes I imagine that Josh is giving thanks to God in his own way for his life.  And in my mind, I see God smiling back, very pleased at His son.

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.

A Shared Joy is a Double Joy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm Having a Very Good Life

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

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

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

I want to be like Jose and Maria. 

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

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

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

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

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

Snapshots from the Short Bus

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

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

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

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

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

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

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

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

Overnight Summer Camp: Pick Up

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

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

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

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

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

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

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

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

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.

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.

Josh Has a Friend

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

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

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

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

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

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

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

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

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

Joshua's Happy Day Poem

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

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

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

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

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

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

Sheer summer bliss.


By Joshua Van Riesen
(as intuited by his mother)

Hope's Story vs. Josh's Story

The weather topped 100 degrees but we were still having a blast!  Every year the regional office of our adoption agency hosts a "Family Fun Day" at a ranch which belongs to a family that supports the organization.  Our kids get to enjoy horseback riding, snow cones, face painting, a BBQ lunch, jumpy houses and a ton of other fun kid activities.  Josh enjoys it because we let him consume as many snow cones as he wants.  By the end of the day Josh becomes a happy, sticky mess!

This year, at lunch, Alex had an interesting conversation with the woman who organized the event, who is also in charge of public relations.  She enthusiastically told us that Hope's birth mom had come to share her story at an agency event recently and that it was so touching to hear more about our family.  Our agency has invited us to share through several venues and platforms about Hope's adoption story.  

There has been a great deal of interest about her story because we have a very successful open adoption situation with Hope's birth mom.  Miranda visits us three or four times a year and has a very positive relationship with Hope.  She is a very mature and gracious person whom we trust to be a good presence in Hope's life (and the lives of our other kids as well).  She's also a great voice for Bethany because she's thoughtful, articulate, poised, beautiful and has had a profound spiritual revival in her life through the process of choosing to give birth to Hope and place her for adoption.  We have been so glad that our story has been used (by the organization and by God) to encourage others about adoption in general and about open adoption specifically.  Below are some links to some of the content that has been produced about Hope and Miranda.  

http://blogs.christianpost.com/every-child/a-life-with-hope-12521/

http://www.christianitytoday.com/ct/2012/october/opening-adoption-files.html

http://vimeo.com/36151146 

However, Alex found himself sharing with the staff person from our agency that it was a little sad for him that, while Hope's story has been told very publicly, there has not been much interest in Josh's story.  Now, it's rather obvious why an adoption agency might not want to highlight Josh's story.  His is a story that says to prospective adoptive parents, "you might adopt a child hoping that he would be healthy but then they turn out to be a severely disabled, medically complicated person".  This is not a adoption agency's publicist's dream.  After we adopted Josh, Alex and I used to joke that we'll probably never get invited to come speak at those prospective adoptive parent trainings because our family story would probably scare everyone away!

Not every child gets to have their story put into videos and articles.  Still, the imbalance between the interest in Hope's adoption story and Josh's adoption story is painful for us especially because it's the healthy, typically developing child who gets a lot of attention and the special needs child who gets ignored.  For us, as parents, both adoption narratives feel like stories that should be told and celebrated.  I suppose that it's the conviction that Josh's story needs to be told that causes me to write this blog.  He may be mostly non-verbal and hard to get to know but I believe, with all my heart, that his story is important.    

Surprisingly, the woman listened with an open heart.  She emailed us a few days later to ask if it would be ok for her to talk to the agency's national communications department about doing a story about Josh for their quarterly adoption magazine.  Apparently, it fits right in with a special focus that the organization is launching about adopting kids with special needs called, "Courage to Love".  We told her that we'd be glad to participate!  I feel so touched that the agency is one who is feeling moved to address this topic.

I just got off the phone with a writer who has been contracted to write the story and am looking forward to seeing what kind of fruit this produces.  I'll blog about this more later, hopefully with links to the story about Josh.