Lost in the Woods

This post was shared anonymously and is about all the children and families that struggle with the daily life of Autism, Special Needs, and Mental Health issues.  This is the view from my personal window.

I Can See It

I could see it all so clearly, like a movie playing in front of me.

A curious child.

A clever child.

An autistic child.

He is crawling out of bed in the middle of the night.  He never has slept much.  It was a pretty spring day earlier, and he wanted to continue whatever adventure he left off earlier that day.  He pushes a chair up to the front door, unlocking each lock.

He is very quiet.

As a matter of fact, he has never spoken a word…ever.

He is so quiet, that his parents and siblings don’t wake up to the soft squeak of the door opening.  It is dark, but that doesn’t register as a concern to him.  Matters of fear are so different for him than the rest of us.

His little bare feet step into the grass as he crosses the yard on a great little adventure.  He doesn’t feel the rocks digging into his skin, or the dampness of old leaves as he crosses into the woods.

There is no concept of being lost to him, so he just keeps walking.

This is what I saw in my mind over and over as the days passed with hundreds of searchers out there looking for a five year old non-verbal autistic child in pajamas and no shoes.

Over and over…My instant anger over social media post blaming the parents, making accusations  as I frantically typed defending the situation.

Our Reality

I could see this so clearly because I have similar experiences with my now almost seventeen year old son.  Though he is autistic, he is verbal, and high functioning, he does have other mental health issues.

He is clever, and adventurous.

I remember a time when I was cooking dinner, doing a load of laundry, and my then six year old has managed to open the living room window, push out the screen, and climbed out.  I remember last week him taking off out the front door and running down the road because he had been grounded from his video game.

I live it everyday.

He requires 24/7 supervision and care from two parents who work and raise other children.  There is an exhaustion there that cannot be described.  A fear of knowing that even if you go to the bathroom or close your eyes for five minutes, he can be gone in a heart beat.

That is our reality.

Then, today, I saw another version of this story start playing in my mind.  I saw the hopelessness, the darkness, the frustration a parent feels.  (Again, not saying this is the place his father was, NOR am I excusing his actions.)

I saw the moment of a parent snapping because being hit, bit, attacked over and over had finally taken it’s toll.  And, it’s too late to take it back.  It’s too late to take a five minute break to reset.  It’s too late to call the doctor, the counselor, or the therapist to beg for more services, more help.

It’s Too Late

Why can I see this all so clearly?  Because there is a darkness, a loneliness, and often a hopelessness many days in our own life raising a child with autism, special needs, and mental illness.  I have never found the words to express our experiences, our feelings, and our everyday struggles.

Maybe, there are no words for it.

But, it is dark, hard, and lonely.   I have watched my son turn blue after hanging himself in front of me.  Wrapping the rope/cord tighter when I approach.

I have watched my son bang his head into walls over and over.

I have watched my son bite himself to the point of bleeding.

I have felt my son punch and kick me.  I have been thrown to the ground, and dragged thru the yard.

I have become a punching bag protecting my other children.

I have been shoved out of the way so he can make his escape out the door and vanish down the street.

It is our everyday.

Have you made the assumption we are not good parents?

I FIGHT everyday for my son to receive the care he needs.  In the last year and a half, he has been in eight mental health facilities.  That does not include the amount of ER visits where they send him home with no psychiatric care.  The police, fire, and EMT. Departments know us all by name, and our address by heart.

He sees doctors, therapist, and counselors multiple times a month, week, day.

I called CPS for additional services or to remove him from the home.  Because, yes, that is where we are physically and emotionally.

We have begged and begged and begged for any help we can get.  We have taken out loans against our house to pay for his care.  We don’t qualify for services or TennCare.  And, yet, we as a family, can’t breathe.

Do You think We Are Alone?

We are not.  I see families face all that we face and more on a daily basis.  We ARE ALL FIGHTING so hard to get the help we and our child(ren) need.  Taking care of our son is a 24/7 job.  Researching services and help is a full time job.  Traveling to Dr. appointments, therapies, and counseling is a full time job.  It often feels hopeless.

No one has the answers, no one has any help to give, no one has a place for him to go.

The mental health facilities do not have open beds.  The corporate insurance refuses to pay if they do.  The ER knows him so well, that his actions are considered base line. (meaning he must do something more extreme because all of the above is now “normal” behavior.)

I say ALL of this to hopefully open your eyes.  Our systems and supports for families with children facing autism, special needs, and mental illness is BROKEN.

I say ALL of this to hopefully bring some awareness and understanding.

I beg of you, not to throw accusations at a family when their child is missing.  I fear that accusations made towards parents of missing children can deter others being willing to volunteer in searches.  And, even if the search ends the way little Joe’s story has, those searches are vital to save the children that do wonder off.

Hanging On

If you see a family struggling, I beg of you to reach out and offer help.  Sometimes help can be as simple as bringing over a meal.

There are moments of brightness, and all of us parents facing these issues hang onto those moments however few and far between they may be. There are hearts full of love.

And, we fight out of love everyday for help because our son deserves help.   But, I do understand where hanging on can be such a difficult thing to do.

I don’t know all that little Joe’s family was struggling with on a daily basis.  I do not know the family personally.  I don’t doubt that they loved him.  I don’t doubt that they didn’t feel desperate, lonely, and hopeless.  I don’t doubt that they were trying really hard most of the time.

I beg that if you are in the difficult life that so many of us are, to please reach out to all your Drs., therapist, counselors, pastors, friends, and DCS/DHS over and over until you get to a place you and your family can manage.  And, let’s all come together and find solutions and help for all of those fighting so hard to do what is best for their child(ren).

It should NEVER be so dark, hopeless, and lonely.

These thoughts, emotions, and experiences are expressed due to the tragic loss of little Joe Clyde Daniels.  He was a five year old nonverbal autistic child that was reported missing early Wednesday morning in Dickson, TN.  After an exhaustive search effort and investigating, it was announced today that little Joe lost his life at the hands of his father.

I cannot speak of what the parents were going through, or why his story ended the way it did.  I can only express my point of view, my personal experience, and my emotions.  This is not all about little Joe.

Written by, An Anonymous Mother 

I am happy to remain anonymous.  I am a mom of six.  Our oldest has autism, intellectual disabilities, and mental health issues.  I saw this situation from every corner possible.  I am heartbroken.

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