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

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?

Clipping Nails and Trusting God

"Today's the day," Alex announced as we were getting ready for school.  "It's time to cut Joshie's nails."

My daughters and I groaned in unison.  We all hate it when this has to happen.  When we engage in the massive challenge that is cutting my son's fingernails, we have to shut all of our doors and windows first because he screams like we were torturing him. I have thought about visiting our neighbors and interpreting for them what is going on so they don't call Child Protective Services but I figure, they already know Josh and have heard plenty of his strange sounds.

This is a child swallows 12 pills every day, gets an intramuscular shot every morning, gets a blood draw done every month and handles all of these things maturely and peacefully, like they are just a fact of life.  When we go to the pediatrician's office to get flu shots, it's my autistic child that I am least worried about.  Josh obeys my requests better than any other child that I am currently parenting.  He even sometimes does his chores without my having to ask!  Generally, these days, Josh is a sweet, compliant kid until we take out the nail clippers.  Though legally blind, Josh can see the little silvery tool from a mile way and he immediately starts yelling "NO! NO! NO! NO! NO!" Suddenly we become evil, untrustworthy parents who are intentionally trying to inflict great pain on our child.

But what can we do?

The thing is, Josh's nails grow faster than any one's in our household.  Maybe it's the growth hormone shot that he gets every day.  You blink and his nails look like Marilyn Manson's.  

Also, Josh has no qualms with putting his hands anywhere then into his mouth or nose.  Josh went through a season where he loved to caress public garbage cans (where he would find pre-chewed gum stuck to those garbage cans and stick it in his mouth).  A few months ago, Josh and I were walking to pick my girls up from their school.  As we walked across a grassy area, and as I was distracted by chatting with another parent that I knew,  he felt that he needed to scratch his groin so he just pulled his pants and underwear down and did what needed to be done.  By the time I reached him and quickly pulled his pants back up, he had already moved on to picking his nose.  He's a strange kid but I love him.  

I have Josh wash his hands a lot but suffice it to say that keeping Josh's nails trimmed is part of what we have to do to minimize the grossness of our lives and of our household.  

And let me tell you that we've tried it all: cutting his nails while he sleeps, clipping after long bath, promising great, sugary rewards. Nothing works.  At some point, we have to bite the bullet and cut his nails.

Now, the level of strategy that this endeavor entails might rival any NFL game or great, historic battle.  First we discern which room in our house has the best light.  Then, my 6 foot 3 inch tall husband has to put his strength into holding him down without hurting him while I try to cut with speed, agility and accuracy.  Josh is 107 pounds now so he's quite strong.  Alex and I end up often sweating, usually swearing.  Sometimes we go the extra mile and do the toes but the priority is the fingernails.

Hope usually ends up weeping because defending her brother is one of the strongest impulses in her 7 year old life.  She knows that we are not hurting him but she can't bear to hear him scream.  When Josh's screaming gets really bad, Hope gives us the stink eye and tells us that we are bad parents.  Anna goes into another room and buries her head into a book.  I picture my girls having to debrief this scene with a therapist years from now.  I'm just trying to do what's good and healthy for my son but it just creating so much tension and conflict for everyone.  

Sometimes I wonder if this is what God experiences with me when he is trying to wrestle me into some sort of cleansing or pruning.  As I look back on my life, there are so many things that God has had to regularly strip me of so that I can have a healthier life.  Toxic relationships have had to be severed.  Bad patterns of negative self talk has had to be regularly clipped off.  Addictions have had to be cleaned up.  I know that, were it not for God's loving intervention, parts of my life and soul would be blacker and grosser than the inside of Josh's nails when it's way past time for clipping.

And how have I responded?  Sometimes, I feel like I writhe and scream as much as Josh does.  I yell at God that it's going to hurt. I ask why He is doing this and I accuse him of being a bad, bad God for doing these things to me.  Unexpected transitions, unmet expectations, aberrations from the usual societal norms, these things have all felt scary and threatening to my human sense of what is safe and okay.  Yet there are times when God has drawn near, held me down and said, "Sweetie, it's time.  We're going to do some cleaning up today because I love you and I want good for you."

Strangely, this morning we experienced a true miracle.  Alex got out the clippers and Josh remained calm.  It was clearly still hard for him.  He still tensed up when we started but, as the picture above shows, it was the first time in years that clipping nails was a one parent job.  There was no screaming, kicking or having to hold him down.  He just sat in a chair like a normal person and waited until the unpleasant task was finished.  It feels like Josh just woke up one day and decided to trust us.

I wish I could experience this type of miracle in my own heart towards God.  When God does something in my life that I don't understand or that I fear, I want to experience a supernatural, miraculous ability to trust that He has my good in mind and that He loves me.  I want to stay calm where I used to resist.  I want to be able to sit still and let my Father who loves me come close to me and help me with my personal spiritual hygiene, no matter how yucky or intimidating things may be.  

Battling Fear

As I write this, my husband is driving Joshua to the emergency room.  Josh has had a fever off and on for two days but this evening he started throwing up and could not keep his meds down.  Josh has a diabetes-like disorder (called panhypopituitarism) which necessitates that he takes a shot and many pills every day, throughout the day.  If he is not able to keep his pills down, he has to be taken to the hospital so that he can get them via an IV.  Thus, we are not allowed to ever be very far from a hospital.  No camping in the backwoods for our family... ever.

I am at home with my girls, with my cell phone charged and close, waiting for a call.  How am I doing?  I realize as I mechanically do some laundry that I am filled with fear.  Dark scenarios of something really bad happening are shooting through my adrenaline filled brain.  I think about how if he dies tonight, my last interaction with my son will be him explosively throwing up all over me.  Was I compassionate to him in the moment?  Was I mean because I was stressed?  I can't remember.

Why do I go there?  Why does a bout of mere fever and vomiting lead me to thoughts about my son's death?

One reason is that when Josh was first diagnosed with Septo-Optic Dysplasia, his primary diagnosis, we asked a service provider if this was something that could threaten his life.

"Has anyone died of this?" we asked.

The woman was taken aback by our question but answered us honestly. She had recently heard of another young child with Septo-Optic Dysplasia who had passed away because she had the flu, was not able to keep her meds down, and had an adrenal crisis.  It's hard to forget stories like that.

I think that the other reason that I am filled with fear is that all parents struggle with fear about our children.  They are these phenomenally precious, wonderful gifts in our lives and we are responsible to keep them alive (and then some).  Something terrible happening to our children is unfathomable but it seems like there is a role for fear in that it helps us to wake up and forces us to give our best to protecting them.

Yet, no parent can live in fear for the long term.  It makes us crazy, cranky and gives us ulcers.  Ultimately, I think it keeps us from being good parents.  At some point, we have to put fear to bed and snuggle up with trust.  What do we put our trust in?  Right now I am trying really hard to put my trust in a God who loves me and loves my son more than I could possibly imagine.  Secondly, I'm choosing to trust that my husband will take the right steps in advocating for Josh and explaining his really complicated diagnoses to the staff at the ER.  Finally, I am trusting that being a good parent does not depend on my being constantly anxious, perfect and vigilant but in doing the best job that I can do according to who God has made me to be.

Well, okay.  Those are my thoughts for this moment.  Now, I'm going to go back to the mountain of laundry.