Friday, September 25, 2015

Lord have mercy

How do I begin to update you on the where about's of my heart and the roller coaster ride of emotions I've experienced over the past few weeks?  For those of you who are just joining in, let me give you a little history.

Our seven-year-old Storm has always been a little bit of a handful.  I often say, "for the first twenty-four hours of his life he was the calmest baby ever".   Sometime around midnight on his first eve home, the crying started and it basically never stopped.    He was "colic," the doctor's told me, "he'll grow out of it".  So I waited.   First I had a colic infant, then a colic toddler, then a colic child.   He just couldn't sooth himself easily and he still can't. His emotions have always been extreme for the situation.  He's extremely happy, extremely angry, extremely sad.  He switches from high to low in a heart beat, and back again.   He goes from zero to sixty and this repeats over and over in the course of each day.  It's down right exhausting. 

Around the time he turned eighteen months or so, his tantrums got worse and started to last longer and longer.  He always had something to say, but his speech was very unclear; we figured that was what was driving his emotions.  "He's frustrated," the doctor's told us "because you can't understand him."  Like any good parent we enrolled him in speech therapy hoping this would be the solution.

Though he remained in speech therapy, the tantrums continued.  Our speech therapist recommended we see an occupational therapist for further evaluation since he could hardly sit still or pay attention during his fifteen minute speech sessions.  We did so, and were told he had a sensory processing disorder:  sensory seeking, they called it.   This made sense to us, because Storm was like a ball of energy.  He could literally, get up at 6:00 AM, ride his bike for three hours, go to the pool for four hours, come home and ride his bike for another hour, play soccer for two more hours and never get tired.  From dusk to dawn he was going going going; like a wind up toy.  So we added occupational therapy twice a week, plus a weighted vest for sensory problems, daily brushing, and a number of sensory diet exercises.  But the mood swings continued as did his endless amount of energy.

Enter kindergarten, and asking a child like this to sit still was like asking a bee to stop buzzing.  The school was calling me every other day about his behavior and him rolling around during circle time, bumping into kids in the line, and seeming like he wasn't paying attention or listening. 

We paid for a two day evaluation to rule out Autism, ADHD and other mood problems.  The testing center gave him an ADHD diagnosis and we were relieved.  He had a lot of Autistic like behaviors, such as the sensory problems and delays in his social relating, delays in his emotional regulation, very rigid and inflexible thinking and some restricted interests, but not enough to diagnose him with Autism.

We started him on ADHD medications and my husband and I took training classes on how to manage children with attention and behavior issues,  it was amazing for the first few months.  However, his behavior gradually worsened again.  He seemed agitated and angry so the doctor said he needed an antidepressant because irritability in kids is an indication of depression.    Reluctantly, I added this medication, but within a few months he was acting even more aggressive, he became combative.  He was hitting us at home, he was extremely angry, and at the same time extremely sad. 

He told me right after his seventh birthday that he wanted to kill himself.  When I was waiting in the car line at school to pick up my other children, he jumped out of the car and ran towards on coming traffic.  I tackled him in the school yard in front of hundreds of smiling mom's and dad's happily picking up their children for the start of Christmas break.   It was like the whole world slowed down, like a dramatic movie scene.    Only this was my real life.  I carried him kicking and screaming to the car and that night he screamed for hours before he finally wore himself down enough to fall asleep.    It was Christmas time last year, that I sat glazed over, in the psychiatrist's office feeling the shock of the words "he has bipolar."

I accepted this diagnosis, because I respected and trusted this doctor and because I was so desperate to help my precious son, I was so desperate for answers.  My son was literally climbing all over the doctor's office that day like a wild animal.  It was like he was lost somewhere inside that body, and it was a deeply painful and dark time.  Later I have realized that this worsening behavior has to do with his sensitivity to the medications.  At the time, it made him appear like he was bipolar.  We  followed the doctor's advice and started him on new medications for bipolar.  Like every other therapy that we had tried for him, it helped for a while and we had hope.

He seemed to do well again for about four to five months, but then all of his "behaviors" started to creep in, the irritability, the anger; what looks like purposely annoying his siblings:  getting in their faces, blowing raspberries, making lots of vocalizations, and obsessions with his special interests.  The doctor added a new medication and within twenty four hours it was like deja' vu of last Christmas. 

What I had most feared would happen did.   Storm became so out of control that we could not control him ourselves, he was hitting us, kicking us, spitting on us, calling us names.   If he had any curse words in his vocabulary he would have cursed at us, but thank God he doesn't know any bad words yet!   He was throwing anything and everything in his immediate reach.  After almost half a day of this and the inability to call him down; We called the police.  We had our seven-year-old admitted  to the psych ward at Children's Hospital and our hearts were broken.  

Though I have grieved over and over, the many things I have had to let go when it comes to accepting Storm's challenges, I cannot begin to explain how scary it is to see your beautiful child suffering in this way.  This night, it was as if my own heart was ripped out of my chest.  This feels like too weak to stand, too hard to breath sort of pain and desperation.  It's the kind of face on the ground, laying prostrate before God, gut wrenching cry "Lord help me."   I could hardly muster the words through the gasping, deep chest, heaving weeping I did that night on the floor of my bedroom.   I've cried out to God many many times concerning this boy, but this night I would have given my life in exchange for his freedom from whatever holds him captive.

He is still currently in the Day Treatment program at the Children's Hospital.  This a step down unit from the inpatient treatment.  He has nurses and a counselor, an occupational therapist and a doctor.    I've been told that he was on perhaps too high of a dose of this last medication, as well as the wrong medication for him.  The Children's doctors do not think he has bipolar, and how I do hope they are right; but I will now hold loosely to any diagnosis from here on.  The label doesn't matter, I just want to get him the help that he needs. 

We are finding through this process that he does have quiet a few developmental delays including several learning disabilities, which makes sense that all of his behavior issues peaked at the start of second grade.   Several doctor's and nurses feel that he really behaves like a child on the Autism spectrum, but for some reason, doesn't qualify for this diagnosis.  That is a topic for a separate post, but if Autism is really a spectrum disorder, than it would seem that he is somewhere on this spectrum, even if it's at the end of it.  

The doctor's explained that children with neurological differences often respond much differently to medications than their typical peers.  This makes a lot of sense to me; as Storm has had more agitation with the stimulant type medications for ADHD.   The doctor's feel very strongly that he does have ADHD, sensory integration issues and a mood disorder.   This poor child has a lot of things he has to overcome each day to simply function.

We just finished his second week in the hospital and the progress is slow.   I feel relieved that we are in a place with people monitoring Storm's reaction to the medications, more testing is being done, and we are learning strategies to manage his sensory issues and the extreme anxiety they cause.   I have walked through one of the darkest places I have ever been and I still do not have all the answers.   I am still learning.

I'm gonna just come clean with you all.  Last year when something similar happened, my first reaction was the opposite of crying out to God.  I searched the internet, I went into "fix it" mode as I often do, and I researched and called doctors and therapists and tried everything I possibly could to help my son.  For seven years I have known something was unique about him.  I have known that he is different from my other children, I have known that he struggled with things that his peers did not.  I have been searching for answers for years.  We have tried, speech, OT, gluten free diet, GAPS diet, supplements, weighted vests, exercises, medications and the like.   The things that helped my other son did not help Andrew and this did not make sense to me.

 I have left no stone upturned in desperation to help my son.   If you just got a diagnosis, or if you are in the darkness right now, I first want you to know that you are not alone.  I know how you feel, I know the desperation of a mother who wants more than anything for her son to just be an average little boy, who is happy and care free.  It is so painful to have a child that is angry; screaming that he hates you, hitting you day after day.  It is so painful to see little glimmers of that child's sweet personality for a day or a week and know that that sweet happy child is somewhere in that body; but as soon as you have a glimpse of it, it's ripped away from you.  It feels like your child is dying every day and you grieve it as such.  And grieve we must, as this is part of the process of finding our own healing, which I will discuss later.  I have a sweet friend who frequently grants me permission to grieve and reminds me that it's okay to go through those actual stages of grief: Shock/Denial, pain/guilt, anger/bargaining, depression (reflection/loneliness),  reconstruction/working through, acceptance/hope (

Wherever you are in these stages, I welcome you here, this is a sacred place.  You will not be judged here, you can be angry, you can cry, you can share your pain and know you are not alone. I am relieved right now that my son has Autistic like features, it really explains a lot of the funny things that he does, like obssess about tornadoes and firecrackers and graffiti.  Why would a seven year old care so much about graffiti; desperately searching for ways to draw certain letter styles when he struggles still with the actual alphabet?   He has a love for working with his hands and especially decorating.  Give this boy an occasion and he will decorate better than Martha Stewart!  He's got skills that would make her blush! 

Had you told me he was slightly Autistic several years ago, I would have been devastated, but I have come full circle to a place where I am no longer desperately trying to fix him.  As my dear friend Rebecca says about her son with PDD-NOS, he's NOT BROKEN!   This is how God made him, rain or shine, sunny or cloudy, up and down, my spicy sweet Storm.  He is my answer to a desperate prayer for a son. And God is not about to give up on him or I now.

Believe me, I know we have a mountain ahead of us.   I know it's not going to be easy.  I know there are going to be a lot of mudslides and treacherous terrains.  Yet I have found freedom in letting go as I was literally forced to, when I left my son on the psych unit last week.  God took back what was already His; what I had dug my heels into and said "Not this part of my life, this is MINE!"  I finally came to the end of myself, the end of my resources, the end of my solutions, the end of my, "but Google said this was what I should do".  I fell on my face and I cried out utterly destitute: "Lord, please help me. Lord have mercy on me and my son." 

And in that moment I found peace.  Nothing about my circumstances changed.  But I changed.  I let go of my striving to control, fix and manipulate the outcome of my situation.  I let go and I let God be God, cause guess what--He is a way better God than me!  I'm not a quick learner and I'm new to this letting go thing, but I don't intend to go back to the old way.  It was full of pain, and stress and agony and disappointment.  It was full of despair and fighting to have something I could not obtain.  This boy is God's boy, He made him and He made me to be his momma.  I know I can't do this on my own.  I desperately need God's help and the help of those God has put in my life.    I am done fighting, I am done striving.  My new posture is prayer and surrender; the result is a peace that can only come from  a God who never changes, not my circumstances. 

In my next post I will discuss "Caring for the caregiver," and ways those of us taking care of chronic kiddos can attempt to stay sane! 


  1. Thank you so much, I don't know where I would be without your support, encouragement and camaraderie!

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    1. apparently I am not technology savvy. I accidentally deleted this beautiful reply from Katie when I intended to reply to it! Katie, thank you for your kind words! I do hope to run into you soon!

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