Living under the umbrella

I hear the sounds of YouTube before I even open my eyes.  A large lump under the covers wiggles and jumps in time with the Mario Kart video he’s watching.  I say good morning, and he pops out of the heap, “I want living room please because its FUN!”  From crouched to full trampoline on the bed, he deposits the phone in my hand, and bounds out the bedroom door.  Time out: 5:32 AM.  We’ve slept in today.

He perches himself on the desk with a bowl of BooBerry cereal and a cup of water, navigating the world wide web at a lightning pace, several videos at a time.  The headphones have lasted almost all week.  Due to chewing, he can go through several sets a day if we’re stressed out.  I’m sure they make a pair of stereo headphones with a chew-resistant cord, but I haven’t found it or I can’t afford it.

I sit on the futon with my computer, my TV, and my coffee.  While I can make short trips out of the room, I can go no longer than 2 minutes at a time without observing him.  He’s fast!  He is an eloper – he escapes.  And he has no sense of personal safety.

In 2009, around 2 AM, I awoke to find the front door open and no boy in the house anywhere.  Running into the street in 30 degree weather, in a tshirt and not much else, I saw a police car up the street so I ran to it.  “Are you looking for a little boy?” I asked.  “You mom?” he asked.  We went into to the house to find my son sitting in a large, overstuffed chair, surfing channels on the cable and eating a banana while two 20 something adults stood looking on.  Apparently, he rang the doorbell, then made himself at home.  I scooped him up and headed home.  He went back to sleep easily, and I spent the next 12 hours turning my house into a high security detention facility.  Because of Child Protection laws, there wasn’t a lot I could do.  There are tons of products to childproof a house against the toddler who is curious, but not against a super intelligent child who can unlock doors and open windows.   Double keyed deadbolts are considered “unsafe” because it requires a key to get out.  Same with locks on the windows.  Safety gates aren’t made to resist anything over about 20 lbs of force.  Fire codes prevent the very things I needed to keep my child safe. It was from that experience I realized the boy required 24/7 human supervision.   Not many understand or believe this requirement.  Sadly, you have to experience it to really understand it, and I wouldn’t wish this on my worst enemy.

The elopements continued.  One time, he snuck upstairs at a friend’s house and went out a 3rd story window with no injury.  He eloped from the one daycare in town that would take him, because staff mistakenly thought they could leave him on his own in the fenced playground for 2 minutes – he walked right out the front door.  He was thrown out of a couple daycares because he wouldn’t sit quietly at a table and color with the other children his age.  He was found running down the center of a busy 4 lane street.  Another time, a helpful 911 dispatcher waited on the phone with me until I found him.  Luckily, the neighbors he decided to visit called 911 too. And very luckily, that time, no one made any referrals to CPS.  I’ll talk about CPS in a later post.

In the past 2 years, I’ve been lucky to receive “services” from Medicaid and  Developmental Disabilities Administration because of the Affordable Healthcare Act.  We have diapers provided for us now, because the boy is incontinent .  We have a stroller wheelchair, which I’ll post about later, and we have approximately 50 hours a month of in-home personal care – which works out to about 3-4 hours a day 4 days a week.  They arrive at this number via a formula – but their formula is broken.

The formula allows 8 hours a day for school, and 10 hours a day for sleep, and the other 6 hours are supervised by family contribution of time.  This is a GREAT formula if you are the average family with 2 parents and grandparents, extra bonus if the parents have living siblings who can help out.  Add in if the family has religious or community connections – and you got a herd of folks who can be there for ya.  That 10 hours of sleep and bedtime is great if the child sleeps in his own room through the night quietly.

But what about the non-traditional family systems?  I’m a widow.  My late husband’s family is not involved in our lives at all.  I’m an orphan.  I lost both my parents to cancer in 2002.  Mom was an only child and her parents are gone,  and Dad and his family were estranged from us from when I was 5.  My nearest siblings live about 3000 miles away.   There is no family to contribute.  My friends all have families of their own, and are exhausted from their own lives and most of them also have kids on the autism spectrum.  They don’t have time for themselves, how could I possibly ask them to help me? Some of them don’t feel comfortable watching the boy….and I get that…I really do…There are some days I don’t feel comfortable watching him either…but I’m all he has.  He’s my responsibility.  I made the choice to have a child, and with that was the choice to take care of him the rest of his life.

And that 10 hours a day for sleep?  My boy cannot sleep unsupervised.  He has night terrors which cause him to bolt and run.  He requires supervision 24/7.  There is no unsupervised time.  They delivered this bed.  It’s a large wooden crate with two horizontal doors and a foam matress.  It’s supposed to keep him safe to sleep at night.  He will not sleep in it.  I’m not too fond of it either.

And my life?  There isn’t one. I don’t date, don’t have a boyfriend or girlfriend or companion. I tried working outside the home – but you can only go around the clock burning the candle at both ends for so long.  Staying up all night to watch the boy and do all the housework, then working full time all day doing someone else’s work.  Missing work to take care of sick kids or rent or bills or business.  Missing work due to my own health issues.  Making too many mistakes at work because I was exhausted and sick.  Losing my house and most everything I owned. The battle with ovarian cancer.  The battle with Fibromyaliga.  The battle with PTSD from 13 years of abuse and all the mental anguish that brings.  And then – add in 24/7 full time eyes on caregiver/therapist/mother /father/world to this boy. Add in grief unprocessed for all the family who has died.   Add in doing it all by yourself because there is no one else.

The boy has moved from his perch to the floor, jumping and flapping and humming.   I remind him to stop chewing on the cord.  It’s time to shower him and get him dressed for school.  Luckily, there’s 2 weeks left before summer vacation.  I try so hard not to compare myself with other parents, and not to be bitter or jealous – even of other moms on the spectrum.  But they have lives, partners, vacations,  romance, conversations, support, services and hope .  Me? I gotta take out the garbage and start the laundry, and if I get that done, I get to make myself lunch.


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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

One thought on “Living under the umbrella”

  1. Wow, I really like your writing! I know it’s tough. You sound like a very attentive mum, it’s hard to find time for yourself. I know! I lose sleep but I do love to have some time to read and write about 6 am every morn, or most morns., cheers


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