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Thursday, March 2, 2017

The Last 6 Months...and the Rest of Our Lives

I have completely neglected this blog for the last 6 months.  I have a solid reason, though.  That reason:

This guy.  You see, about the same time the blog went dark, my son got sick.  

What the public knows:  

Jack has Selective Mutism (a severe anxiety disorder leaving the sufferer paralyzed and incapable of communicating in situations deemed stressful or uncomfortable, occurring in only .001% of the population), Obsessive-Compulsive Disorder (both an anxiety and neurological disorder that can be managed through very specific therapy, but never cured and has the ability to completely control one's life, occurring in only .3% of the pediatric population), Separation Anxiety Disorder (an anxiety disorder that severely distresses the sufferer when separation from a trusted person - in this case, me, his mama - is real or perceived, leaving one unable to function normally in life, occurring in only 4% of the population), Generalized Anxiety Disorder (a disorder causing excessive anxiety and worry regarding the real, theoretical, and perceived, occurring in just 10% of the population), and Sensory Processing Disorder (a neurological condition in which the brain has trouble receiving and responding to information that comes in through the senses - in his case, sound, sight, and crowds are triggers, occurring in just 5% of the population). Jack is in therapy for his conditions and works harder than anyone I've ever known to defeat his demons, but more support is definitely necessary. 
Here's where you come in. You buy a shirt, the funds go Little Angels Service Dogs where they work tirelessly for Jack and others like him. They train the dog, we train with the dog, we bring home the dog, Jack and dog live happily and peacefully ever after. 

A service dog would offer Jack peace. It's as simple as that. It would help distract and redirect him when his OCD rears up its ugly head, provide boundary control for him in crowds, signal an oncoming anxiety attack, give lap pressure during times of undue stress, and give him an overall sense of being understood and more in control. Peace. Don't we all deserve that? Certainly, our children do. 

Jack is just the coolest kid ever. He loves tennis, pottery, reading, Greek mythology (he's currently sporting a cap, so no one can see his satyr horns), make-believe, Calvin and Hobbes, camping, wolves and cheetahs, hiking, and snuggling with his mama. Those with SM are often gifted, which is the case with the young lad. He astounds us every day with his critical thinking, adult-sized vocabulary, quick wit, and genuine caring and empathy. The kid is a riot! Of course, not many get to see him in full bloom, because of his anxieties. They're crippling, which is heartbreaking for his parents who love him desperately. Given the low prevalence of his conditions and the rad fact that he's a redhead (only about 1% of the population), to say that he is a rare gift is an understatement! We want the world to see him in his full and unique glory. Y'all don't know what you're missing!

What I'm sharing with you all exclusively:

My son has always been a worrier.  He came out that way.  Oh, he is happy and active and smarter than anyone I know, but so. much. concerns him, gives him crippling worry.  The doorbell ringing would send him into a panic wondering who it was and why.  Making decisions on what to have for dinner was enough to cause near hyperventilation.  Even his dad coming home from work after dark would bring him to tears.

My son has always been terrified of the two of us being separated.  I don't mean he has bouts of clinginess or that there are certain instances when he's afraid for me to leave.  I mean, there are times when we are not able to be more than inches away from one another, let alone even in different rooms of our own home.  

My son has always been sensitive.  Crowds (what I call "physical chaos"), sights ("visual chaos"), and sound ("audio chaos") can bring him to his knees and throw his world into, well, chaos.  He wears ear protection to the movies, his tennis coach does "whisper cheers" instead of a raucous chant at the end of practice, we avoid places we know there will be an abundance of people, we keep things simple as often as we're able to control that.  

My son has always been quiet around strangers and those he does not know quite well.  This includes children.  He has had one friend in his life and they're no longer in touch.  He's not just "shy," he's panicked when someone speaks to him.  I can count the number of people he talks to on two hands and have fingers left over.  Anyone outside of those eight people is met with his back when they try to engage him as he burrows his face into me.

About 10 months ago, my unschooled boy surprisingly decided he wanted to try kindergarten.  It shocked the heck out of me, but it's his life, so we got him registered at the local public Montessori school, his dad even got a job as teacher there, and we set off to get supplies, meet new teachers, familiarize, and, most of all, pump each other up about this new adventure.  He was all in.  

Months before school turned into weeks before school and I began to noticed a change.  Seemingly overnight, he became interested in the proper way to wash his hands.  He began asking about this or that having germs.  At first, I wrote it off as him just being an inquisitive guy, which he'd always been.  I thought this was just his new interest.  The questions became worries fairly quickly, though, and they started coming at us more and more rapidly.  I was in denial.  It wasn't until the third instance of him awaking in the middle of the night panicked about the germs he was certain were on his hands that I opened my eyes.  He was so tired.  He was terrified of what he just knew was on his hands, but he was too tired to move, so he lay there with his hands outstretched in front of him as he dozed and woke with a start, dozed and woke with a start, dozed and woke with a start.  That's when I knew.

I stayed up all that night researching and reading and searching and contacting therapists and crying and researching some more and mentally apologizing for the couple of weeks I hindered him with my despicable denial and researching some more.  The next week, we had him in therapy.  

Through the diagnostic process, our eyes were further opened.  All of a sudden, everything made sense.  He wasn't just quiet around strangers.  He had Selective Mutism.  He wasn't just clingy.  He had Separation Anxiety Disorder.  He wasn't just a worrier.  He had Generalized Anxiety Disorder.  He wasn't just sensitive.  He had Sensory Processing Disorder.  And the stress of the new upcoming situation (rather, the stress of all that has been previously listed combined with the new situation) triggered what wasn't just worries about germs.  He had OCD.  

We got to work.  Highly specialized therapy twice a week, daily grueling homework, two hours of driving each day, and lots of life changes were all in order.  It's not enough, though.  He's making strides with his OCD.  He has learned tools that will help him throughout his life.  There is no cure for it.  He'll always have it.  His Selective Mutism and other anxiety disorders are more of a struggle for him.  We're not seeing the progress we'd hoped to see by now.  More support is necessary.  Cut to more research.  (Continued research, actually, because it never stops.)  It seems that a service dog is in order.  

After more research (you're noticing a pattern, I'm sure), we found Little Angels Service Dogs.  We're now months into the application process and we've come to the hardest part: the fundraising.  

We have to raise $24,000 (not including travel costs associated with the two weeks we have to go to California to train every day with the dog before bringing it home).  Now, I've raised a little money for others before.  I'm no slouch.  However, this is truly daunting.  That number is huge!  I can't think about it, though.  I have to think about one step at a time.  $24K is raised one dollar at a time.  Every dollar puts us closer.   We've started HERE with a T-shirt campaign.  My sister is an artist who designed this interpretation of what my son's life will be like with his service dog.  We're running a two week whirlwind campaign to get us started.  We have other fundraising campaigns in the works, but this is the first and I have high hopes for it.  

What say you?  Care to help one special little boy get his service dog?  

Here again is the link to the Booster T-shirt fundraising campaign: https://www.booster.com/jacks-service-dog


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