A Rich Tangle of Emotions

Yesterday I dropped Josh off at his winter day camp at his autism therapy center.  We walked into the waiting room where kids were meeting up with their one on one therapists for the day.  As I took in the sights and sounds, I was inundated by a rich tangle of emotions all at once.  These are a few of them:

Empathy.  One tall, well dressed Asian dad with an ID card from a well known local high-tech company pleaded with his child.  His clearly autistic son, about 5 years old, was not happy about being transferred to his therapist for the day.  As the boy escalated into a full blown tantrum, I could feel the rising desperation of the father. "Please.  Please Jacob."  He begged his son.  "Please don't do this.  You'll be ok.  Mommy will pick you up soon.  Please, sweetie.  Daddy has to go to work.  Please."  Compassion cut through me like a hot knife through butter.  How many times have I experienced this very same "bad transition" moment?  I could almost read this man's mind.  He was probably thinking about what they could have, should have done to prep his son for the transition, knowing that it might not have mattered anyway.  He was already dreading the costs that they might have to pay in the evening if his son had a bad day at the program.  He was probably already late to work but couldn't wait to get there so he could feel like a normal person again with the possibility of experiencing competence and productivity.  I offered a knowing smile but stayed out of the way and said a quick, silent prayer.  

Pride.  The whole time while this was happening, my own son was choosing to behave with shocking maturity. He chose a spot on a couch as far away as possible from the upset child.  He stuck one finger in an ear then focused his attention on eating his apple.  Oh, how far we've come on the journey of auditory sensitivity.  There was a time when a situation like this could have resulted in hours of crying.  Now, Josh is clearly not happy or relaxed but he is dealing with it.  I'm filled with admiration for this kid who has had to work so hard to overcome so much. Over the past thirteen years, we have come so very, very, very far.

Anger.  I could see in an instant that the younger sibling of another autistic child was typically developing.  The three-ish year old girl had the intuitive sense that her brother was struggling and she knew to keep quiet and out of the way.  She contented herself with reading some of the books which were available in the waiting room yet ignored by all of the autistic kids.  She found a picture in a book that excited her and had an immediate impulse to share her discovery through pointing and eye contact.  I watched her and saw how her brain was a meteor of learning, making cognitive and social connections by the second.  I was gripped by the thought that it's so unfair that some kids get to have brains that almost seem to self-develop.  Other kids, like my son, have brains that are so slow that they never learn their ABCs.  Some kids are able to integrate the world around them and make growing sense of it.  To others, the world is a places of constant threats and chaos.  Why?  How is that fair?  It's not and sometimes it makes me so mad that I want to shake my fist at God.

A few minutes later I sat in my car, zombie like.  These and other emotions swirled in my head, preventing me from driving to work and moving on with my day.  How are you supposed to transition into being a centered, productive adult when moments like this assault you with such a barrage of emotions?  How can I walk into my day without wearing all of these feelings on my person like heavy jewelry?  

As I took a few slow breaths I sensed the ever-present invitation of Jesus:  "Give me all of your thoughts and emotions.  I will keep them safe."  

Safe. Oh, yes.  I closed my eyes and remembered the safety of the One who can handle every whirlwind.  Jesus, He is not overwhelmed, even when I am.  He always sees us with eyes of love, with attentive ears.  

One by one, I let go of these disparate feelings and laid them at His feet.  I felt my spine lighten as I shared my emotional load with the one who offers to yoke Himself with me.  

How do you walk through life when you face intense moments of varied emotions?  You must let the One who is your constant companion lead you. You accept that you are never alone and never left to carry even your momentary burdens by yourself.  

Overnight Summer Camp: Drop Off

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

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

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

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

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

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

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

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

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

Grace and Stress: A Day in the Life of a Mom

Sometimes I feel like my life is so chock full of moments of profound grace sprinkled with immense stress that I can't process either one.  Today was an especially demanding, full day because my husband is out of town so I'm single parenting this week.  Here is a brief description of the mixture of grace and stress in one day.

6:33 am       I wake up to a small, formerly unfriendly dog licking my toes.  We are dog sitting Frankie who was very anxious when his owners dropped him off.  I guess sleeping at the foot of my bed has made him decide that I am worth his affection.  This is a small but welcome little grace.   I get up out of bed to let Frankie out for his morning pee.

6:58 am       I discover that Frankie has elected to take his morning poo on the carpet immediately outside of our family bathroom.  The poops are lined up very neatly, almost like Morse code.  Is he trying to tell me something?  I fly into a whirlwind of deep cleaning my carpet with a variety of chemical cleaners and two different vacuums.  Stress.

7:30 am       I coax my the girls out of bed and encourage them to get ready for the day.  They are unusually compliant.  Small but significant grace.  We need to leave the house by 8:10 so I can drop the girls off at their respective summer day camps and get Josh to his doctor's appointment.

7:45 am     I pull Josh out of bed and he is one grumpy pre-teen.  He is standing at the toilet screaming the words which I usually say to him every morning, "Aim for the middle, Josh!  Aim for the middle!" He is not aiming for the middle.  The combination of autism and visual impairment usually means that I have to clean the bathroom after every morning pee.  Today is no exception.   Stress.

8:25 am       We finally pull out of our driveway after 7 separate trips back into the house to bring out various forgotten items which are necessary for the day; sunscreen, swimsuit, snack, can of pink hair color spray.  Stress.

9:18 am    Josh and I arrive at his endocrinology appointment only three minutes late.  This is a minor miracle.  Despite my having made the appointment as early as I could in the day, they are already running late.  Clearly, these people do not understand that most autistic children are seriously not good at waiting.  Josh inhales all of the snacks that I have brought with me and has moved on to wanting to eat breath mints, the only food-like items left in my purse.  I let my son eat 13 vanilla mints, spaced out for as long as I could.  Josh and I spend some time taking selfies on my phone.  Finally, an administrator walks into our room to try to work out a complication that we are having getting Josh's growth hormone covered by insurance. Without coverage, growth hormone is several thousand dollars per month.  This lady talks to me with a mix of cloyingly sweet words and a strong undercurrent of hostility and blame. She reminds me three separate times that this complication is due to my missing an appointment six months ago.  She also tells me that I should be grateful because other patients of hers have it much worse.  Stress.  I resist the urge to talk back to her with full snark or to slap her upside the head. Grace.

10:52 am     I meet up with Josh's summer school class at at the Magical Bridge Playground where they are on a field trip.  This is a place that has just opened in our town after a number of moms with special needs kids raised many millions of dollars.  It's an amazing, inspirational, inclusive space that is designed to help kids of all abilities to play alongside typically developing kids.  Today, there is some sort of event going on with a band, free pizza and about 50 kids with special needs and their caregivers having a blast.  I drop off Josh and watch him head to his favorite sensorily safe play structure.  The kids in his class are excited that Josh has arrived and head toward him to greet him with high gives.  Big grace.

11:11 am   I arrive at my work place only eleven minutes late for our staff meeting.  My colleagues greet me with friendly, empathetic faces.  I love my job.  I love that I have a place to work and belong that uses parts of my brain that have nothing to do with taking care of children or managing their needs.  After eight years of being a full time mom, I have recently started to work part time.  I cannot express what a blessed grace this is to me.

7:54 pm    The children have been picked up from their various camps, fed, and bathed.  Medications have been given.  At evening prayer time I have to tell the girls the news that the dog of some dear family friends was hit by a car yesterday and died.  Molly was the first dog that has ever stayed with us.  She was our introduction to becoming dog lovers and dog sitters.  Hope and Anna respond with loud wailing and big, fat droplets of tears.  I imagine that this is how the wailers at funerals in the biblical times sounded except that, I think a lot of those folks where hired.  My daughters' sadness comes straight from the heart.  Out of our lamentation comes a conversation about heaven, grief and the purpose of pets in our lives.  During our prayer time, while I am praying, one of them starts to make vague whispering noises.  When we stop to ask her what she was doing she tells us that she was "praying in tongues" because someone has told her that sometimes he prayed in tongues when he was overwhelmed by a situation and didn't have the words to pray but still wanted to pray.  We decide that this was fine.  In that moment, I conclude for the millionth time that parenting is wonderful and worth all of the nonsense.

8:52 pm     I have my first moment alone all day.  I am thinking about how life is so full of  beauty, ugliness, life, death, kindness, rudeness, stress and grace all in a big, fat jumble.  Contrary to what reading Facebook might make you think, life is not a constant stream of joyful, sweet, picturesque, insightful moments.  It's more of a tangle of the good, the bad and the mind numbingly boring stuff in between.  But I thank God for His gift of reflection for it is one of the things in life that help us to digest it and make sense of it all  it.  As I process and pray about my day, Grace wins over stress.

Persistence

This week I had a number of frustrating phone calls and interactions with service providers who are supposed to be providing services to Josh but do not or do not provide it well.  Rude or irritating comments made by various people that I talked with this week are still bouncing around in my head:

       "I'm sorry but you missed the deadline for that program.  I thought I told you about the deadline the last time we talked . . ."

       "I thought I already called you back about that."

       "This isn't the right department for that inquiry."

       "Ma'am, I'm just not allowed to tell you any more about that."

       "That program is no longer funded."

By the end of the week, I just wanted to scream from all of the pent up frustration from dealing with bureaucracy.  I mean, do they intentionally stack these organizations and governmental departments with unhelpful people on purpose to make already stressed out people like me feel even more stressed?

I consider myself a decently bright person with a lot of drive and persistence but sometimes I just want to give up when I face such tension producing interactions.  I  know that a lot of parents of kids with disabilities feel the same way.

As I've been battling the systems and paperwork that are involved in my job as a mom of a child with disabilities, somewhere in the back of my mind, I've been thinking about another woman in the Bible who was dealing with the many needs of her family and a more than frustrating system that was not serving her well. In Luke 18:1-8 Jesus talked about a widow who was desperate for justice.  She kept going to a judge, the face of the current governmental system that she had to work within, to seek to have her needs met.  According to the passage, this judge who "neither feared God nor had respect for people".  In other words, he didn't really care about doing the right thing or about helping people get their needs met. Yet, because of her persistence, he decided to grant her request, presumably because he was just sick of dealing with her.

Jesus tells this strange little story and then asks, "And yet, when the Son of Man comes, will he find faith on earth?" Apparently, this persistent widow is an illustration of the kind of faith that He is hoping to find when it's time to really see who is a person of faith and who is not.

 Jesus affirms this kind of persistence.  In fact, He seems to equate it with "having faith".  I don't think that this means that Jesus wants to His followers to be annoyingly driven, demanding people.  But, there is an insistence on hoping for something and working toward that hopefulness that I do hear in Jesus' teaching about this woman.  Through this story, I hear Him saying, "Don't give up.  Keep asking."

These are a few thoughts about persistence as I consider this passage:

1)    Being persistent means sometimes skating on the edge of being annoying.  I think that sometimes, I avoid asking for things again and again because I don't want to be seen as demanding or out of touch or desperate.  But, you know what?  Sometimes you just have to not worry about how you appear and focus on doing what you need to do.

2)     Being persistent is risky.  It's easier to give up because, then, you don't have to face the pain of things not working out or the frustration of things not working out for a long time.  It's easier to not hope for something than to go on hoping and wanting something but not being confident that you'll get it.  Yet, despair is no real solution and the best option is to keep putting yourself out there.

3)     We should especially be persistent about asking for things from God.  At it's core, this story about the persistent widow is not a teaching about activism or a "how to" on navigating bureaucracy.  It's about prayer and being persistent in asking for what you need from God.  This is a good reminder to me that the state that I live in does not ultimately meet Joshua's many needs.  God does.  I have to work it out with God.

I want to be persistent like this widow.  I want to be determined to fight for what we need even in the face of an injustice, unkindness and lack of care.  I want to be that way the next time I talk to my insurance representative as well as our regional center service coordinator.  I want to be like this woman the next time I talk to Jesus about what I really need.