Before

"Before School Age (First Communion)"

Before her mind became cloudy, we used to knock on the front door instead of letting ourselves in.  That was before she constantly used to say she felt “dizzy-headed”… like her head was in “buttermilk,” even.  Before all of that, before her car keys were taken away, before I managed her checkbook for her, before she had a sitter, she was my grandmother: Dana.

Dana’s house sits on a bay of a lake.  Before, the water was clear.  My cousins and I used to play in it endlessly… if you stood very still underwater, tiny fish would swim up to you and nibble at your finger tips. We trolled the long seawall and would make ashtrays adorned with shells for my grandfather from red clay under the sand of the lake floor.  The boat ramp opposite from the beach was good for finding bigger shells.  The boat ramp was a great spot for pretending, as it could conceivably be used to land military jets, spaceships, pirate ships, host mermaid parties, the usual.  There were fish frys and many long summer days at Dana’s house on the lake.  I remember her expertly gutting and cleaning the fish while we all swam and played. Memories of exquisite tomato sandwiches, swimming for hours, Dana’s continuous singing, and the contagious laughter and cigarette smoke coming from my grandfather, “Papaw”…  All these memories and feelings form together to join one grand memory- a vision I call “before.”

Slowly over time, the water in the bay has gotten cloudier and cloudier.  The boat ramp got more and more slippery.  As we got older we didn’t troll the seawall or make anymore ashtrays.  Our wet towels were no longer spread out to dry on the prickly holly bushes in the summers.  When I was in high school, my grandfather, Papaw asked where the cat was while we were all sitting at dinner one night.  He mentioned he hadn’t seen it.  (They didn’t have a cat).  Papaw’s mind had begun to fail, and he was not at home much longer.

But before, all the grandkids would ride on his golf cart to look for golf balls.  He took us on long trails, and he’d stop to let us excitedly hop off and collect the stray balls. We used to walk up to the workshop and hear the roaring and whining of his table saw at work.  He grew the best tomatoes I’ve ever tasted.  Right outside the front of the house, Papaw planted a cherry tomato plant just for me, because I loved them.  I ate them right off the bush.

Dana used to let me play with her make-up and her porcelain figures that she displayed that were clearly not toys.  I remember Dana mostly working in the kitchen, yet I hardly remember seeing her eat.  Just sitting half perched and waiting for someone to “need” something… salt and pepper, tea, another napkin, an extra helping.  If no one needed anything, she’d oftentimes fuss over her cooking.  I often spent the night with them as a child, and we would talk and read books until we fell asleep.  I loved hearing stories of her childhood.  She and her siblings would ride in the back of a mule drawn wagon with the tailgate down, stopping to pick peanuts every time the mule would come to a stop.  And there was the Sally Jane hole at her grandmother’s house.  Dana’s grandmother had a scuttle hole in her kitchen ceiling that her children, grandchildren, and great-grandchildren knew not to dare enter- as the ghost of “Sally Jane” would get you!  Who knows what her grandmother had hidden in that attic…  She let me help her make red and green pepper jellies- I remember the bright green juice gushing through the cheese cloth each time my little hands squeezed it.

I helped her decorate her Christmas tree every year.  It reached nearly all the way up to their 12′ ceiling, and we lavished it’s branches with eclectic ornaments collected over time.  I remember globes that housed the most tiny and intricate nativity scenes and winter scenes inside of them, lots of gaudy, bright gold tinsel garland, and the big bulb lights.  That was something that she and I did together each year- I was her Christmas decorator.  I loved looking at old family pictures and listening to Dana tell the story behind each photo.  Many of the people in those photos at her house were no longer living- those that lived before me. I couldn’t hear enough of their stories. I asked her many questions about her first husband, my paternal grandfather who passed away at 51 years of age.

When I lived with Dana, her mind was rapidly unraveling just as the lack of normal development in my two year old son was showing it’s face.  The ultimate chaos.  Her kitchen became more and more quiet, and we kept more of a presence in her house- hovering over her pill box and her mail box, worrying about her eating habits and what she bought at the grocery store.  And there were the countless Coke cans all over the house.  Before, there were countless batches of soup and pineapple upside-down cakes coming out of her kitchen.  I loved her chicken and dumplings, her vegetable soup with ham, and her collards.  During the holidays there were her peanut butter balls, her orange balls, red velvet cake, and ambrosia.  I could sense it in her cooking- that her mind was fading.  We stopped knocking, we just began to let ourselves in.

Not long after I moved out, we were moving her into a nursing home.  It was a shock to see all her belongings so severely pared down.  She moved from a sprawling house overlooking the lake to a small room with a TV and a mini fridge. She soon began to lose her place in time- away from her home, away from her kitchen, the lake…  She asked about her parents and siblings who had all passed away before her.

When recently I moved her things out of her room at the nursing home, I found a note in her worn and beloved Bible.  It reads: “Before School ageI remember my first communion (at Trinity Church in Waycross, GA).  My Daddy took me to Church, and it was Communion Sunday.  Mama had stayed home to cook for all the family.”  I’m not sure when she wrote the note, but Dana was reflecting on her before

Dana seemed to remember me all the times I went to see her.  I think she did.  She loved seeing my son, Grant.  He’ll know her better in time.  Before they gave her the morphine, she still had her eyes open.  I got the opportunity to look into her eyes and speak to her, even though she couldn’t speak back.  I hope when she closed her eyes she saw her before: Sunday lunch at her beloved parents farm when her boys were little, Christmas morning in Walhalla, South Carolina, the mountain trip with her sister Thelma and Bill before she and Charles had children, the stale, papery taste of that first communion wafer, she and her siblings and the squeak of the wagon wheel …

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Count me out King Zuck!

Ok- so I’m out.  Facebook’s changes (although disorienting) haven’t annoyed me as much as some, and I’ll also add I would rate myself as a fairly savvy computer user.  However, I was totally unaware after one of the (multiple) Facebook facelifts that my profile was public- I don’t even know how long it had been public.  I’ll live, but there are some things in life that I believe in standing up for.  Mark Zuckerberg is a talented programmer that lacks business ethics.  I’m sick of his elitist, hypocritical statements and so am not going to be a part of his property.

Let me explain.  Zuckerberg (while attending Harvard, no less) made Facemash that allowed students to vote on the better looking student – it contained photos that were used without permission.  Not to mention this is gross and … hell, let’s just call it what it is: mean.  He built the site “for fun.”  Nice.

In November the Federal Trade Commission pursued Facebook for the same breaches – privacy violations.  Changing your page and the settings and how they look so it’s pretty damn difficult to keep up with how to manage your own page.  The FTC pursued FB for these reasons (though they have settled, as FB is currently addressing these breaches):

  • Facebook didn’t warn user that Friend Lists and other data would become public when it transitioned to a new privacy model in December 2009
  • Apps can request access to almost any piece of user data, though Facebook said they could only access data they need to operate.
  • The “Friends Only” privacy setting still allowed data to be accessed by third-party apps used by friends.
  • The “Verified Apps” program didn’t actually verify the security of apps.
  • A security bug caused Facebook to accidentally share personal data with advertisers when it promised it wouldn’t.
  • Content on deactivated and deleted accounts could still be accessed despite claims to the contrary.
  • Data of users in the European Union was transferred in violation of the US-EU Safe Harbor Framework.

What’s worse is having to listen to Zuckerberg’s mouth.  During this past Black Friday King Zuck announced, “Black Friday really shows how greedy and materialistic people can be when stores have sales.  It’s pathetic, really,” he tweeted.  Hmmmmmm…. he just recently (in May) bought a 7 million 5 bedroom house in Palo Alto, CA …. why not just get a little condo somewhere, Zuck if materialistic people disgust you?  And maybe us little guys need to take advantage of discounts, right?  This is coming from a Harvard grad who hob nobs with Warren Buffet and President Obama.  Learn some class and be gracious King Zuck.

It’s been real.

Regards,

Cathryn Smith

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The Scream

Every day from the time my son was at day care until he was about three and ½ years old, I would pick him up from school and perform the routine.  “Did you have a good day?”  (Expected silence from the back seat….)  I’d wait a moment.  “What did you do today?”  (More silence).  “I bet you guys had fun today, Mrs. So and So said you guys got to use the computer today….”  (Silence).  Every now and then he’d sing an inaudible song or there would be a familiar tune he’d hum.

I remember childrearing books talking about how you should talk to your infant – talk to them about how you are dressing them.  Talk to them about what the colors of things are.  Just talk to them.  I did this with Grant until he was about 3 or 4 years old and still do now (at 6 years old), because he still doesn’t respond sometimes.  During his periods of regression, it is very common to have a long day of: “Grant- GRANT!  Answer me (and physically turning his blank face toward us).  But I still talk to him anyway.

If I sang to Grant when he was an infant, he cried.  I actually made the comment in his first 3 months of life that I felt like he was autistic.  It seemed the sound hurt his ears (and not just because my singing just sucked).  Since he was born he was hard.  I didn’t know what to do as his mother.  He wasn’t a happy baby at all.  From the moment he was born until he was 3 months old he cried.  It was beyond colic.  We ended up in the ER twice because there was something wrong with my baby.  I knew there was.   I still don’t know what he needed and that upsets me more than words could ever express.  He spit up so badly the night he was born in the nursery, the physician switched his formula to soy.  We switched it roughly 4-5 times thereafter.  Along with multiple bottle switches, adding Kayro syrup to ease his constipation (along with enemas), and he also took Zantac as an infant.  He only slept for 2-3 hours during the day solid- then at night- not at all- we were up every hour.  We had days in which he slept only 4-5 hours total.  That was it.  I knew the lack of sleep was not only killing us- but had to be  physically bad for him, too.  We eventually hired someone to stay up at night with him by the time he was two.  Aside from the colic, reflux, and sleep disorder, he was slow to crawl, walk, and the speech was slow to evolve… he did have one word commands and two – three word sentences, but then the progression just stopped.

When he was two ½ years old, we noticed he would NOT get into a bouncy house at a birthday party with anyone in it, but he did want to try it out when the other kids were eating cake and opening presents.  While the other kids were bouncing, he stared intently at the motor on the ground for 10 minutes or more.  Apart from his unbelievable hyperactivity, we noticed some other things.  He had begun flapping his hands and fixating on anything that spun.  He lined his toys up and just liked to watch his cars roll back and forth.  He liked to stare at the car’s tires as he rolled them on a table at his eye level.  He’d do it quietly and methodically—over and over.

When his pediatrician referred him to a specialist, my husband and I knew there had been a problem all along.  I was relieved to finally have a “reason.”  What I didn’t expect was the specialist to just smile and nod as I naively rattled off so many hallmark symptoms.  She, in turn, let me know he had severe comprehension and speech delay and was Autistic.  Get intervention.  Come back in six months.  It was a quick and easy call for her.  We didn’t even have to spin the football we brought like dumb asses to make him flap his hands for her—this mysterious thing our child was doing.  It’s called stimming.  I know that now.  As we left I felt a huge wave of relief in some ways, and my husband wept as we finally walked out of the Medical College ahead of my parents and Grant into the cold January air.  It took a full year for the full impact of what was happening to hit me, and for me to be able to weep.  I am still now struggling with this evolving diagnosis.

The hardest thing about having an autistic child is that it has completely isolated us.  His behavior was extremely challenging and there were a lot of temper tantrums because of his severe speech and language delay.  We may as well have been speaking French for the first few years of his life.  That was the way it was explained to me.  Grant didn’t understand language had a function; when we asked a question, he didn’t realize we expected him to give us an answer in return!  Grant never responded to questions save a handful regarding his basic needs.  He didn’t understood or take direction if you gave him a task, nor did he respond to his name at times.  We did, of course, have his hearing checked.  Oftentimes, the more you’d verbally try to engage with Grant, he’d eventually burst out into a dialogue off of a cartoon he’d seen (verbatim).

That was the loneliest time.  He was three.  I wasn’t sure what was in our family’s future. Assisted living?  Just an eccentric young man?  When it was just Grant and I, I felt completely alone.  I couldn’t communicate with him, nor he with me.  I was supposed to be his Mama.  He didn’t respond to conversational questions.  There was no reciprocal conversation.  He never asked me any questions.  Funny questions three year olds should be asking.

We never went out to eat.  Ever.  He couldn’t sit still for more than 3-5 minutes.  Holidays were hard as well.  Grant was only interested in the lights on the tree and the ornaments for the first 3 years of his life.  He didn’t know who or what Santa was about until he was four- that was our first Christmas with him.  It was wonderful.  Before then, he had no interest in presents under the tree.  He never understood the concept that there was anything in them- they were, after all, just boxes and that’s all he took them for.  It’s the language thing again—his environment really didn’t make any sense to him.  He didn’t open any presents on his own until he was about 4.  He also was put off or fearful (not sure which one) of new toys.  As early as one year old, if we gave him a new book or toy, he would have nothing to do with it until at least a full year later.

By the time Grant turned three or so and no siblings arrived, there were the constant questions from my employees and friends, “When are y’all going to have another baby??”  I tried at some point to interject some quiet honesty, “We really have our hands full,” or “Grant is enough for us, we are totally happy with our family as it is,” etc.  But that was never good enough.  I was told how Grant would not be happy without a sibling.  How it was wrong to have an only child.  How this would not happen with my next child… SERIOUSLY?  Every time a baby would come into our office where I work (which is at least weekly), my employees (about 20 females) would beeline to my office doorway: “Look at So and So’s baby!!!!!!”  The visiting baby of the day was always smiling and acting content no matter who held it.  My employees know I didn’t give a shit about seeing other people’s babies but they don’t care.  They don’t understand it’s a knife in my heart.  I don’t feel like I got to be a mom like they did.  I was in a constant state of panic and despair.  It was never happiness or milestones at our house.

I wish people understood or gave a shit that I have a child who is still recovering from a developmental disorder, and that it’s a constant struggle for him and for us.  I wish people realized half the time when they brazenly bring a drooling, complacent child to my office doorway, I am typically dealing with a difficult decision about putting my child on medication (or more medication) or contemplating home schooling for the year because he’s suffering so badly in school.  As I sit in my office with a lump in my throat, here comes the self-righteous baby brigade marching to my door.

It’s no different outside the workplace, either.  At birthday parties now, Grant still avoids the crowd.  He exiles himself to an empty room, and one of us has to sit with him to make sure he isn’t tearing the room apart.  “Let him be!! He is fine!  There is nothing in this house he can hurt,” the parent will insist and try to encourage us to join the other parents.  But no- he’s not fine.  Even though he’s chronologically a certain age, that’s not what his level of performance is.  When parents insist we need to just ‘leave him be’ and “RELAX!” it makes my husband and I crazy. And hurt.  We’re not taking turns sitting in your 4 year old daughter’s room with our 5-year-old son because we’re being weird and anti-social.  We’re in here because Grant is really more on a 3 year old level overall and can’t be left alone in a strange environment or outdoors.  And we’re concerned he’s overwhelmed right now. And by the way, this is no fun at all.  In fact it totally sucks. No offense to your daughter’s room.   In case no one here noticed my child hasn’t taken part in one damn second of your child’s party.  No one ever asks what it’s like…          

I overheard a comment at that same birthday party from a mother regarding how erratically and wild our child’s behavior was outdoors: “Good God!!! He doesn’t need anymore cake!!!!”  He didn’t eat any cake to begin with, bitch.  That would require his standingin line with a group of people and that’s something he’s not gonna do.  The last two parties we’ve attended, he’s either left the house when all the kids gathered for presents and cake (walked right out the front door), or goes into an empty room.  Naturally, he has to be watched, so we live in his solitude rather than he joining in our world.  This has resulted in the loss of friendships.  We began not going to many parties or functions that Grant was asked to, and so now we get no more invitations save a very, very few.

I asked a friend of mine to take me off the invite list to a Mom’s group.  Childcare is provided while the mom’s hang out and chat.  I was not up for comparisons, and it had become extremely difficult to be in mommy circles.  It was making me highly aware of how different things were at my house.  I asked her to take me off the list and confessed to her I had been depressed since the diagnosis had been made.  I told her I also felt like I had nothing in common with any of those moms and there was no way Grant could be left in the toddler room, anyway.

My friend seemed to take offense to my feeling that this group wasn’t the place for me to find support.  She said they have many moms dealing with very hard issues such asinfertility and a “variety of issues with their children.”  She also added:  So just know that we aren’t sitting around talking about quilting baby blankets…

Ouch.  I tried to reach out and let her know we were very much tied down to our house and I was feeling depressed.  I feel like in return I got chided somehow?  I didn’t ask for a lecture about how hardcore the Methodist Moms were.  Frankly, they are just moms of normally developed kids that are socializing.  After this exchange, we never saw much of each other again.  Her kids became busy with sports and social activities.  Mine did not.  Many of the friendships I enjoyed dissipated as my husband and I watched them enroll their kids in t-ball, dance, soccer, different schools, etc.  All things my child was not ready or able to do despite his chronological age.

These chicks may not be talking about quilting baby blankets true enough, but …. does anyone else’s child’s bathroom look like a Meth lab like ours?  Who else is crushing up pills and making concoctions just so their babies can sleep every night?  And what of making decisions about adding schedule II narcotic medications during the day on top of that for focus?  Do these parents still change diapers and sheets everyday?  Who else is getting ugly looks and having people shake their head at you when your child hits you in the face when he gets over stimulated and has giant melt downs you know he can’t help?

There won’t likely be any running discussion of laxatives (most Autistic kids have GI problems), sleep disorder woes and medications tried, the insurance coverage issues, receiving services through the school system, and surviving in the school system would likely be the topic of most meetings for many autistic parents that aren’t home schooling their kids.  Moms with Autistic children wouldl be discussing how your child doesn’t respond when you talk to them, stimming, medications, seizures, EEGs, mysterious and frightening regressions at different times that no one can explain or give you any hope or help with…. Fears that keep you up every night that your child won’t be ready to take care of himself after you are gone.  Hearing your child say I love you for the first time after waiting for three years.   None of that will likely be discussed at those meetings.  Socialize, de-stress, and get in touch with your creative side all you like, ladies.  That’s not the hand we were dealt at my house.

Kindergarten should have been fun.  It was anything but.  I have spent the last year fighting for my child at IEP meetings so he can have what he needs at school in terms of the proper support and services.  His IEP called for Occupational Therapy at the beginning of his school year, and the county was “between therapists.”  It was November before Grant began Physical Therapy.  He is behind in handwriting because of his fine motor deficit in his hands.  His schoolwork was also not being modified at the beginning of the year because his teacher was afraid he wouldn’t do well on his statewide school assessments.  Grant was struggling without the modifications and he was miserable.

Grant’s school years will continue to be a fight.  Grant needs individualized attention in the classroom, he is still learning the concept of language and comprehension, social skills, and receiving occupational therapy.  Now we are adding medications.  I am doing everything I can to make it so Grant will be a successful, independent adult, because one day we’ll be gone and won’t be here to care for him any longer.

A lot of other moms have had a very different experience.  They have been able in many ways to just watch their children grow and absorb most everything they are taught.  These moms got to experience their children wanting them and outwardly loving them.  They experienced all the milestones, even if a little late.  They filled out the books they were given.  Got their babies’ pictures taken.  Grant still won’t look at the camera.  These children will thrive in social situations.  My child will probably not be as socially proficient, but he has a photographic memory and excels at computers.  He just does not recall it or store it the same way we do.  I will never, ever forget the first conversation I had with my child.  He was four years old.      

Grant’s milestones are completely his own.  I put away the baby books that want you to record “Baby’s First Year.”  I never did put anything in them.  Those milestones never came. He has his own path.

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The Cat

The Cat

Virile and wet as a watercolor brush,
The execution of a loving nudge– bold and warm–
wanes into streaks like a Chinaman’s whiskers,
framing sushi breath, blowing hot and cold.
Chisel cheeks cradle golden globes.
set on unlocking the mysteries
of banal traffic outside.
Sunny, pyramidal radars
crown the head– planets shift
and freeze.Four flaxen clouds float down–
the earth silently applauds his jump.
The tail, a wispy afterthought
is composed– in vain– he yawns:
shining white slivers like zebra stripes
awaken a swelling taste for sudden change: gritty
as newly scuffed soles upon concrete.-Cathryn McQuaig-Smith

From The Peacock’s Feet
Volume 27
2002

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