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.

Mess and Beauty

Today was a wonderful, delightful, horrible, draining, inspiring, uplifting, confusing, chaotic, burdensome and beautifully rich day.  Ever have one of those?

This afternoon I took Josh with me to our monthly visit to serve dinner to local homeless folks.  My husband and I usually take turns bringing one of the girls along while the other parent stays home with Josh.  The church where this meal is hosted is lovely but the whole experience is rather loud and chaotic.  We've always just assumed that Josh would hate it.  Today both girls happened to have activities this afternoon so I took a risk and went with my son.  Developmentally disabled, visually impaired autistic people need to serve too, right?  

Josh hung in there much longer than I expected.  From the first few minutes he kept saying, "I want car." but he eventually let me put some thick, purple latex gloves on him and helped me serve rolls with a pair of tongs.  The tongs were not easy for Josh to manage but as he gave himself to the task, his dexterity improved, especially since I told him that he could eat some of the bread after we had served the people.  My guess is that he served about 30-40 guests before he plopped himself down on bench behind me and loudly declared, "Want bread."  He spent a good chunk of the rest of the time gnawing on a roll (or five).  

Josh had a subtly softening effect on the clients, even the clearly mentally ill ones.  One gentleman who was wearing a toga made of torn cloth with lavender flowers tucked behind each ear gave Josh a little smile as he went through the line.  It reminded me of how infants or dogs bring out kindness and gentleness in people.  

By the end of the evening, several homeless folks came up to Josh and thanked him for his service.  I was worried that people might be offended by Josh's lack of social response or even eye contact so I said, "Sorry but he doesn't really talk."  The gentlemen were not at all deterred.  One nodded vigorously and knowingly said, "Oh he knows exactly what I'm talkin' about.  He can talk all right.  We just don't understand him."  

Another man who had worn a hard, even fierce look on his face during the whole meal took a moment to encourage me before heading back out onto the street.  "You're doin' a good job with him. He's a fine young man."  This really touched me.  Honestly, the man has no idea whether I'm a good mom to Josh or a complete whack case of a parent but he wanted to extend some kind word to bless me.  I'll take that.  

Josh sang and laughed in the car all the way home.  Who knew that he knows the words to Madonna's "Star light, Star bright.  First star I see tonight..."  He waved his hands in the air back and forth, back and forth in his little spot in the very back of my van.  The 10 year old friend of my daughters who was coming home with us for a quick play date astutely observed that Josh was very happy.  Truly, my son was a complete delight in that moment, a profound treasure.

Minutes later, the sun went down on my affections for my beloved.  I lost track of Josh for a few minutes as I was shifting into "getting people headed toward bed" mode.  My girls came home from piano, swimming and choir with many stories, requests and needs.  The world series was on TV so that also snatched up pieces of my fragmented attention.  As I was battling dishes while serving up placating slices of cake,  in the corner of my eye I saw that Josh's bedroom door was open and my bedroom door was closed.  I knew in an instant that he was not hiding out in his room but mine.  My mommy-intuition told me that something was not right.

I opened my bedroom door to see that Josh had found the pen next to my bed that I had been using to journal earlier today.  For some reason, my delightful treasure of a boy had chosen to draw all over several pillows and my brand new duvet cover.  How he had managed to draw so much in so little time I do not know.  Maybe he had thoughts or feelings or energy that he needed to get out.  He was a happy little soul, clapping and laughing, like someone who had taken a satisfying artistic dump on my bed.  

I could feel my head and my extremities tingling with the stress of the moment.  Of course, that was exactly the moment that my girls chose to have a conflict and their friend's dad was due to pick her up at any moment.  I made it very clear that they all should steer clear of Mommy for a few minutes.  

Later, at "Second Snuggle", the time I have a private chat and prayer time with each child, my daughter Hope asked me why I had been so upset.  

"Hope, pillowcases I can throw away but I am very sad that Josh ruined my brand new comforter.  I don't know if ball point pen comes out and king sized comforters cost a lot of money."

Hope looked squarely at me and said, in her very 8 year old, Hope way, "Mom, you are too concerned with how things look.  Josh's designs look pretty.  A lot nicer than your boring old comforter.  You should be happy that he drew on it."

I was tempted to just scoff and dismiss what she said because she has no idea about how hard it is to maintain a household with a kid like Josh living in it.  But in a little corner of my heart I wonder if she's speaking some truth.  Maybe there is art in mess and some of the most beautiful art is found in the interaction between homeless people and children with developmental disabilities or in shower heads on pillowcases.  Maybe it is worth pausing and taking a look at things that autistic people draw on pillows and duvet covers.  I still think that I'm too uptight of a person to truly appreciate beauty in the midst of mess but I'm trying.

School Pictures

Ok, you parents of kids with special needs out there, do you buy the school photos for your kids?  It's back-to-school time and I'm spending the evening doing paperwork that must to be turned into the school office by tomorrow.  Filling out the form for the school photo is giving me a moment of tension-filled pause.  I am finding myself wondering, "Do I really need to purchase school photos?"

The combination of autism, intellectual disability and visual impairment almost guarantees that my son's school photo will be seriously horrible.  School photo day is always a 9 out of 10 on the stress-o-meter experience for Josh.  The lines, the exhausted photographer, the bright lights, the demands to look in a certain direction; it's a recipe for disaster for a kid who has sensory issues and absolutely no motivation to smile.  I think that Josh's stress is only to be outdone by my level of stress when I get the photos back and I get to take a look at the snapshot that has been printed on the two 8 x 10's, eight 5 x 7's and 24 wallet sized photos that I had pre-ordered.  How can my incredibly handsome child look so . . .  special needs in every professionally taken school photo?

And yet, for the past 7 years that my son has been in public education, I have dutifully purchased the incredibly overpriced packages of school photos.  Did you know that this year "Package A" is $58?  If you combine that with an optional photo mouse pad, travel mug and "touch up" enhancement service, we're talking over a hundred bucks on a crap shoot of a photo.  Really?  In this age of digital cameras, do people really pay this much money for photo products which you have no option to preview before ordering?

Part of the problem is that the school photo order forms are sent home along with the back to school checklist and the emergency medicine form.  It's almost as if these are all absolute necessities for your child to be registered to go to school.  The assumption is that all good parents will collect and exchange school photos of their children throughout their years of schooling. And which elementary school parent in America wants to miss out on your child's class photo?  You feel like gotta have that unless you don't care about chronicling your child's childhood!

Well, my son is in middle school now.  There's no more class photos to be had.  I've spent all of the energy that I have for the evening writing this post and venting my frustration about the many years of uncute school photos of my extremely cute child.  I'm taking the plunge, people.  This year, I'm not going to order school photos.  I am relishing the prospect of writing one less check during this back to school season.  I'm trusting that the world will not end and that I will still be viewed as a competent, loving parent.  If you send me a school photo of your child this year, please know that I will not have one to give you.  But I am likely to be a happier, slightly less stressed person and so is my son.

Regulating Yourself

After three days of being with his volunteer "buddy" at a church conference, Josh was done.  One of the staff working the conference came to find me in the main meeting area in the middle of the session with a look of quiet desperation.  

"Uh, are you Josh's mom?  He's really unhappy."

I race walked to the area where Josh was sitting. His beloved magnadoodle had been thrown to the floor, earbuds were still sort of sticking out of one ear.  Josh was viciously scratching his eczema on his neck with one hand and then periodically hitting his head with the other hand.  He was wailing loudly and huge, wet tears were plopping off of his face onto his already food-stained shirt.

"Ok, buddy.  Mama's here.  Let's go for a walk."

I thanked the volunteer, who was mighty glad to return responsibility for this hysterical child to me.  Josh and I walked hand in hand to the parking lot, tears still dripping off of his face, where the evening sun was just starting to be low and orange.  After we did a few laps around the vast parking lot Josh seemed to be doing better.  When I turned on some worship music on my phone Josh started doing his happy circles; spinning round and round, flapping his hands, first smiling then laughing.  

Why do autistic people walk in circles?  Josh doesn't do this but a lot of other autistic kids like to jump-- over and over again.  Why?  The  best explanation I've heard is that spinning and jumping are examples of repetitive motor behaviors. When a child is spinning or jumping he/she is activating the vestibular system. The child may seek vestibular stimulation as a means to elicit “feel good” sensations and/or also to positively affect his/her arousal.  In other words, many children with autism seek sensory information or experiences from the environment (due to feeling under-stimulated). They may also use spinning and jumping as a way of regulating themselves (i.e.: when they are stressed, anxious, or overwhelmed). Spinning and jumping can help one feel regulated and “grounded.”

Watching Josh turn to spinning to calm himself down made me realize that it might not be as bad or strange of an idea as one might think.  To come to think of it, I need regulation now and then and maybe spinning is not as bad of a choice as yelling at one's family members or eating a whole bag of Tostitos.  

We all have our ways of getting regulated or grounded, don't we?  Some methods are more socially "normal" than others but they all are a sign that our minds, emotions and bodies get out of whack and we are trying to find a way out.  Sadly, some of our choices don't actually bring the restorative centeredness that we really need.  Sometimes disregulation leads to more disregulation and we just spiral into a very unhappy place-- like Josh was doing when he was crying, scratching and hitting himself.  

But with a little help from someone that we love and trust, we can find a different way, a new way to get centered and calm.  In the quiet of the parking lot with the vast, golden San Luis Obispo hills in the background, it occurred to me that Josh's spinning was like an autistic prayer.  It was Josh expressing that he was needy and not right in his own mind, heart and body.  It was a way for Josh to open himself up to joy, peace and, I think, his Creator. 

Tonight, the fruit of Josh's spinning was a smile and a calmer body.  After a while, he took my hand and was clearly ready to walk back into the church.  

Are there times where you could use a little help with your self-regulation?  What does centering prayer look like for you when you are overwhelmed?  

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!

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.

The Purpose of a Flower

“In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here?  Can’t you get busy some way?” and then finds himself unable to understand the flower’s response:  “I’m sorry, sir, but I am just here to be beautiful.”    

                                                                        Henri J.M. Nouwen    Creative Ministry

When my son is being slow I find myself so easily frustrated.  Sometimes it takes him forever to get out of the car or to decide that he’s done at the toilet.  The busy mom in me, who is always aware of the millions of other things that I need to get done that minute, is tempted to blurt out, “Josh, why can’t you go faster!?”

Life with Josh is never expeditiously productive.  Josh doesn’t think very quickly.  His body doesn’t decide to do things very easily.  Communication with Josh is like being at a coffee shop with intermittent wi-fi. 

Usually, at the zenith of my impatience, I find that God gets my attention.  He often plants a question in my mind like, “Why do you need Josh to be more effective and efficient?”   I am guessing that it has more to do with how I feel about myself and about my life than a true assessment of what my son is able to do in that moment.

I also begin to realize that my son was not created to be fast.  Josh will never be a resident in the realm of high productivity or immediate transformation.  

Josh is here on this planet to be a parable about a different way.  His purpose is to make people slow down, even to stop for a bit.  His impact will be on those who are willing to pause and rethink our assumptions about how things have to be.

The other day Josh walked out of the house loudly munching on a zucchini like it was an apple.  I had a knee-jerk response to rebuke him.  “No, Josh, we don’t eat uncooked zucchinis!”

One of my girls asked, “Why not, Mom?”

You know what?  I did not have an answer.  Yes, it was unwashed but that isn’t the biggest deal in the world.  Why can’t you eat a raw zucchini if you want to?  I have eaten them diced into salads before.  There is nothing inherent in a zucchini that necessitates cooking.  If my child is happy to eat a vegetable, without my forcing him to, why would I stop him?

“Well . . .  go ahead, Josh.” 

I put my unemptied grocery bag and armful of jackets down and sat on the bench in front of my house and watched him eat the whole zucchini with great gusto like it was a sweet, juicy peach.  Upon finishing, stems and all, he looked very satisfied and amused.  He started clapping and humming, choosing this moment to have a little celebration.  Watching Josh quieted my spirit.  I smiled, knowing that Josh had been placed in my life just to be beautiful.