Monday, December 8, 2014

The Blessing of a Meal Delivered

Sometimes I like to pick organic food from my winter front yard garden like onions, chard, kale, spinach, lettuce and herbs and prepare a healthy meal together with my three children.  The girls are much more likely to eat vegetables that they have helped to prepare. Even Josh gets into the kitchen activity by helping out with the washing and cutting.  I like how everything feels very warm and "hearthy" as we cook our dinner together.  We often end up singing together and I tell them stories of how my sister and I used to enjoy learning about the pleasure of cooking from my mom.

I'm just kidding.  The above paragraph is me falling into a fantasy of idyllic, unrealistic mommyhood.

Yes, there are days when I pick vegetables from my garden and whip up a salad.   Yes, sometimes I have a vision for dinner early in the morning, prep it all and pop it into the crock pot by ten in the morning.  Yes, the girls do sometimes help with dinner prep and they always set the table but it's rarely the happy, zappy picture that I imagine that it could/ should be.

But there are days, my friends, there are days when I feel like would rather stick knitting needles in my eyes than make dinner.

Do you ever approach 5pm and find yourself realizing that it would take every single ounce of motivation and energy that you have in your profoundly tired and spent body to cook dinner for your family?  Are you ever tempted to spend large amounts of money on cardboardy, unnutritous food YET AGAIN because you cannot bear the thought of pulling out that skillet to create something that comes from your own refrigerator?  Does the thought of doing dinner dishes fill your heart with heavy, gummy, sticky dread?

It was on a day such as this a few weeks ago that I experienced "The Blessing of a Meal Delivered." My husband had had a minor surgery on his knee and, therefore, had to ask for my help every time he needed a glass of water.  The girls were taking turns being sick.  Sleep was not good for anyone that week.  Joshua's home autism therapy was hitting some walls and needing much more of my attention.  It wasn't like my life was on fire but I was WORN DOWN.

A few friends from church rallied to deliver us a few meals.  Each meal was stupendously delicious because someone else made it and they infused it with love.  The picture at the top of this post captures one such beautiful meal.  Ironically, it was a vegan meal delivered by a family that is vegan.  I don't know if my kids even know what veganism is and they certainly have never had a whole vegan meal but we all devoured this dinner with deep appreciation.  German vinegary potato salad, super wholesome, nutty, chunky bread, well-spiced and tasty veggie burgers, it was all fantastic.  And it had been delivered by a smiling, empathetic person who cared about us. Truly, it was the grace of God made manifest in a real way to my somewhat mildly overwhelmed life.

If you know someone who is having a hard time, consider offering to bring them a meal.  Prepare something yummy and somewhat homemade.  My suggestion is that you bring it to them in either disposable or pretty serving dishes which they can return with no hurry.  Include something healthy and something chocolate.   And never, ever underestimate the blessing and power of a meal delivered.

Thursday, December 4, 2014

What if People Misunderstand My Son?

Sometimes I fear that, one day, Josh will do something that gets misunderstood as threatening and that people who are afraid of him will take harmful action.   Because of his disabilities, my son's behavior can seem suspicious and erratic if one doesn't understand what is going on with him.

There have been times when Josh has touched women inappropriately in public contexts, patting their butts or touching their breasts.  Usually this is just part of his flapping behavior, never something sexual.  Some people have been very understanding when they turn to see Josh and discern that he's developmentally disabled.  Some people have gotten very upset and have responded with great hostility.  Josh has picked up food at stores and has started eating it without paying.  He is twelve (and still very cute in my personal opinion) but he is already quite tall for a mostly Asian kid.  When he's wearing a big jacket or hoodie, he looks like a typical high schooler.   I wonder, at some point, are people going to interpret something that Josh does as threatening, dangerous or illegal?  And if that happens, will there be time for me or someone who is with Josh to interpret who Josh is and why he does things?  What if Josh happened to be alone?  Could he have a weird, random or intense encounter with police, a security guard or a neighborhood watch person? Could things go bad fast?

If someone told Josh to put his hands up in the air or to get down on the ground, he is not likely to comply because he wouldn't comprehend what was going on.  Josh does not understand what a police officer is.  He has no concept of legal or illegal.  He is not good about boundaries and social expectations.  Given recent events which have been in the news, such as the deaths of Eric Garner, Trayvon Martin and Michael Brown, I can't help but to play a dark scenario in my imagination where a tense situation leads to his injury, arrest or death.

In general, I still believe that police officers are men and women who are out for the good of the general public and I am very grateful for them. I hope and trust that most have been trained well enough to slow down and try to understand what is going on for people when things seem strange. Yet I cannot deny that somewhere deep inside me is a dark fear that is rooted in the reality that the world is not a safe or fair place, especially for young men of color.  My heart breaks because of this. Lord have mercy on us all.

Today I will lift up a special prayer for the mothers of all of the young men who have been the victims of violence.

"And a sword will pierce your own soul too."  Luke 2:35

Friday, November 28, 2014

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.

Wednesday, October 29, 2014

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.

Monday, August 18, 2014

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.

Tuesday, July 22, 2014

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?  

Thursday, July 10, 2014

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!

Tuesday, June 17, 2014

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.

Monday, May 12, 2014

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. 

Wednesday, April 30, 2014

Dental Grace

Our dentist is the Rolls Royce of pediatric dentists.  He is a professor at Stanford University Medical Center.  His private practice, which has a waiting list a mile long, specializes in unique and difficult cases of pediatric dentistry.  His waiting room is filled with children with special needs and their stressed out parents.  Dr. Adams is very dignified looking African American man in his sixties.  I think that he’s had an extremely successful career and he drives a very expensive sports car.  He always wears a bow tie with some sort of child friendly print but his manner is all business.  His staff speak in very low and respectful tones around him.

Like many autistic children and children in general, my son does not do well with people poking sharp instruments into his mouth.  He had a stint of doing well at his cleaning and check up appointments for a couple of years but after several years of completely unsuccessful appointments we elected to try sedated dentistry at our local children’s hospital.  The plan was to do a cleaning, X-rays, sealants, and a thorough check up, all while Josh was under anesthesia.  Because of Josh’s endocrine issues, a team of anesthesiologists and endocrinologists were also present to make sure that his hormone levels were managed while he was under.  Like most medical processes with Josh, it was quite a production. 

The morning, which began swimmingly, came to a grinding halt when Dr. Adams met with me after the procedure to tell me how things went. 

“Well, we found some cavities,”  he began.

“What? “ I was very surprised, as Josh had never had cavities in his life.  “How many?”



My face must have immediately betrayed my key emotions – shock, anxiety and shame.  I’ve done a bad, bad job with my beautiful son’s teeth.  I thought of all of those times that I didn’t want to fight with Josh to floss so I didn’t.  I wondered if Josh would ever learn to brush on his own.  I imagined Josh losing all of his teeth and having to get false teeth, which a thousand specialists would have to be involved in.  They would whisper to each other, “His mother didn’t do a very good job managing his teeth.  She’s a bad, bad mom, you know.”

I expected that Dr. Adams would respond with some firm encouragement about better dental practices at home.  What parent doesn’t dread what the dentist will say when their child has failed the cavity test? 

But Dr. Adams surprised me with his kindness and grace. 

“You know, my sister has cerebral palsy,”  he shared.  “It’s hard to brush her teeth because she doesn’t have the muscle tone to keep her mouth open.  My parents and I really struggled with it her whole life.  It can be really hard with kids like these.  Also, Josh has his cavities primarily because he has exceptionally deep grooves in the tops of his teeth.  This is not your fault.”

What do you know?  Our dentist gets it.  And that ray of grace was enough for me to pull myself together and be led into the post op room where my son groggily opened his eyes and smiled at me.  

Tuesday, March 18, 2014

What to Do When You are Anxious about Your Child

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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