Archive for November, 2013

FDA crackdown

The timing of things, people, and messages crossing my path is lately nothing short of bizarre.

While reading online news today, I came across this:

Why is the FDA cracking down on home genetic tests?

The article even uses, as example, the 23andme site where my biological second cousin just found me.

While I don’t totally disagree with what they’re saying, the first thing for which I should declare my gratitude this Thanksgiving is that I got in on the site before they shut it down.  It seems to me that the FDA is trying to “protect” us from information – to “protect” people from themselves, from our evident collective stupidity.

And the clock strikes 13.

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new love mail

…and then I went outside just now, and our mail carrier had come, and inside my mailbox were no fewer than three cards, all from dear friends, each telling me that when they count blessings on Thanksgiving, I am one of those blessings, and they wanted to make sure I knew it.




I am humbled.  I don’t know what to say.  Just when I was reeling from the cruelty, in comes love to soothe and heal.  I wish I had sent Thanksgiving cards to all of them as well, for I am so grateful for these 3 expressions of love, especially with such exquisite timing.

All three cards are now taped in my kitchen doorway and I will look at them and re-read them all the time.  To those three friends – and to all who support me and hold me up when I don’t have the strength — thank you.

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new hate mail

So I applied for another part-time writing/editing/proofreading telecommuting job to supplement the one I have now.   As part of the process, I sent them the link to that article I wrote for HLNtv.com in the Spring of 2012, when I enjoyed my 15 minutes of fame.

I noticed there were several newer comments I hadn’t seen, since I haven’t looked at the page in a while.

One was hate mail:

“I can’t believe amy seems to PROUD of having institutionalized her son at the ripe old age of 9. That she wants folks to praise her for banishing her son from her home and seeing him maybe once a week.

That’s not love. That’s borderline child abandonment. Gee, I wonder why autistic kid who was sent away by his parents out of “love” isn’t especially happy to see them once a week.

I’ve no idea how amy sleeps at night!”

S.S. (Yes, those are her initials; her Facebook icon was a picture of puppies, too)…

While I can understand the judgement, I have no idea how Susie got the idea from this article that I was proud, or wanted praise.  I answered her comment, though she may never see it because hers was from a while ago, and I chalk it up to ignorance.  (If she only knew the half of it).

I have been candid and told my truths here, even when they are raw and ugly, mostly so others won’t feel alone.   I guess I have to expect the occasional hate mail.  Judging is easier than understanding, and I forgive “Susie Ignorant” for her cutting remarks.

But it still hurts.

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Of course as soon as I posted that last entry, the school called to say Jonah needed a management/two-person take-down that day.  But I wasn’t expecting a miracle, just enjoying a moment.  Or a few thousand moments.  In general, his behaviors have shrunk significantly in both frequency and severity.

Though I have been very sick (more migraines w/accompanying nausea etc.) since early Friday morning and didn’t go with my mom to see Boo yesterday, I am beginning finally to feel better.  I’ll see Jonah on Thanksgiving Day when Andy drives him up for a visit, and I can look forward to that.

I also am looking forward to and simultaneously afraid of revelation number two.  It will be a wandering story, because these kinds of revelations always are…and I’ll start here…

I have this wonderful friend, and though we’ve only spent six days or so in one another’s company, we have remained simpatico even though those six days are now three years ago.  She and her partner are embarking on the journey of foster parenthood, and many of the babies they will foster have been born crack addicted or will have other conditions and disabilities to overcome.

Having regarded Boo a “difficult” baby, I’m unsure how to imagine caring for an infant who won’t/can’t stop screaming, who won’t/can’t sleep, and who, somehow at the same time, needs to be nurtured and loved and held even more than a “normal” child.    I know in my heart that my friend can do this, and can also let go when it is time to do so, however heartbreaking it may be.

Is it heartbreaking for the baby, too?

I was in foster care from birth to six months old, after which I was adopted into my family.  I wish I knew the circumstances of the first six months of my life, other than that I was placed into foster care because “there was something wrong with my feet,” which my parents were later instructed to fix, early 70s-style, by attaching my feet to a straight bar as I slept.

I wonder how much those six months shaped me, and I wonder why, as my parents tell me, I did not seem to mind being suddenly moved to another environment with different people, different sights & smells — a different life.  It kind of worries me (half-kidding) that I was all fine and smiley in my new home.  I would not like it one bit if someone took Boo away from me at six months old — and I would not expect him to like it one bit either.  I mean, damn.  You can’t tell me babies are that malleable.  Or are they?

Or was I simply quite happy to wake up warm and so obviously loved and welcomed by a large family of parents, aunts, uncles, grandparents, the whole shebang?  None of my family has ever made me feel adopted.  Not ever.

Still, I was always curious about my biological relatives – and I wanted more medical history for both me and the only other blood relative I know (Jonah-boo) – so I did a spit kit DNA test to see if I could find some blood relatives on www.23andme.com.

It’s been a year now since my results came back.  I did find out which genetic markers I had and whether I was predisposed to all kinds of different illnesses and diseases.  I actually have a low risk rate (compared to the average population) of most everything except Restless Leg Syndrome (RLS).

I also found out what part(s) of the world my ancestors are from, and how much of me is from where, and who I am distantly related to based on DNA strands or whatever tool they’ve got to determine these things.

A genetic expert I am not.

I never found anyone closer than a “possible 3rd or 4th cousin” on the site, and tracing relations that far removed, especially with me being adopted, would be near-impossible.  Last month, though, I received a notification that a definite second cousin match, R, had been found.  She wrote to me through the 23 and me site, and I answered.

Long story short, it appears I have stumbled upon my biological relatives.

After sharing all the non-identifying information I had with R (which actually provides quite a lot of details, like four half-siblings born before me and each of their birth years and sexes, plus the fact that one had died before I was born),  she wrote back again.

It appears R’s father is my first cousin, and that one of his five aunts is my birth mother.  R’s whole family is still in the area where I was adopted (very close to where I live now), and though she now lives in the NYC/NJ area, she is coming up to see her family for Thanksgiving and will speak in person to them about all this.

One of the big potential problems is that, based on all that non-identifying information I’ve got, I’m the product of an affair (hence the four half and not full siblings), after which my birth mother reunited with her husband, and my birth father likely just took off running.

So I e-mailed R that I will understand if they don’t want to meet or see me, and that I’m not trying to impose myself on their family.

Exchanging e-mails would be great; meeting them would be cool.  But I need to prepare myself for complete rejection.  I cannot expect they’ll be rolling out the welcome mat for one who may only remind them of a painful situation perhaps best left in the decades-past.

Who knows what will happen?  I am used to questions, and mysteries, and instability, so this is not really all that different.    At any rate, I should know what has been decided, hopefully soon.

I really would like a picture of my birth mother, though, if that’s all I can have.  I want a partial mirror of myself to stare into, the way all my relatives (on both my mother’s and my father’s side) have certain commonalities; the features, behaviors, traits, and mannerisms they share are their mirrors.

I’d like a look at mine.

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World English Dictionary

— n
1. The act or process of disclosing something previously secret or obscure, esp. something true;

2. A fact disclosed or revealed, esp. in a dramatic or surprising way;

3. Christianity:

a. God’s disclosure of his own nature and his purpose for mankind, esp. through the words of human intermediaries.
b. something in which such a divine disclosure is contained, such as the Bible.

– 0 – 0 – 0 -<3

It has been a week or two of revelation.  Jonah, sprouting up tall and learning self-calming techniques from his teachers and caregivers, is almost a different child.  Yet Boo keeps it real always, never letting us forget he is and may always be what I half-jokingly refer to as a “punk ass.”

Consider this photo taken yesterday while on car ride:

his arm raised to hit, boo narrows his eyes and sucks his thumb like it's the bad-assest thing a kid could do

his arm raised to hit, boo narrows his eyes and sucks his thumb like it’s the bad-assest thing a kid could do

The difference is he did not hit that time.

I just turned back in my seat and ignored him, knowing my picture-taking, even sans flash, may be pissing him off.  He did not ratchet it up – no pulling my hair or Houdini-ing himself out of the harness.  No dissolving into tears or throwing reachable items from the backseat into the front.

I think he just wanted to enjoy his car ride, unfettered by attention or expectation.  We are beginning to understand one another more, in a strange way I can’t quite explain.  He is getting older, and learning independence skills.

Yesterday he cleaned up after himself like a pro, going overboard like only a child with autism can:  Upon deciding lunchtime is over, Jonah picks up his plate and any surrounding napkins or garbage, opens the garbage can lid, and carefully throws it all away.  (And instead of using the garbage can as a perch/stool…


…like he used to, more often than not now he will sit at the table).

Then he grabs the potato chips and returns them to their rightful place – in the right-hand cabinet on the left-hand side of the second shelf up.

After that he comes back to the table, grabs up mama’s half-drunk teeny sized can of black soda, grandma’s just-opened can of white soda, and places them gently on the counter next to the sink.


After pausing a moment to regard their placement, he rearranges the cans so that each faces exactly front and are perfectly next to one another.

“Oompa Oompa?” he asks next, and I start his now-favorite movie, Willie Wonka and the Chocolate Factory, on the DVD player.  Jonah first arranges and straightens the 3 remote controls on top of the TV, then reaches both hands out to similarly straighten the VCR and cable box.


Andy brings him 2 plates, one with cut-up banana on it and the other with cheese and chives cracker.  Jonah happily sits on the floor next to the coffee table as the movie, at whatever point we stopped it before, starts to play.  My eyes fill with tears.  They don’t fall, but everything blurs as, for a few minutes, he is just a boy having a snack, watching a cool movie.

For a while he got up on the couch and I asked him if I could scratch his back, and he said yes in his cute small voice.  I asked if he wanted me to scratch over or under his shirt.  Under shirt? he requested, so gently I scratched his back.  Kisses? I asked him.  More kiss, he replied, which also means “yes, kisses.”  And so I kissed his head and his cheek and his foot, and we laughed together, and I thought about all the words and concepts he is learning, and how incredibly amazing it all feels.

Yes, last week when he was standing on the bed and I leaned in for a kiss, he leaned in too – and smacked me in the face.  But I’ll take it, if it means the pendulum is somehow holding itself in a mostly good space.

Some more pictures:




Jonah and his daddy, who loves him very very much.

All good, this time of revelation.

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So I saw this article today about the earliest signs (in the first months of life) that your child may have autism.  I never thought to write about this before because I don’t want to be one of those people who instills fear in every parent’s heart, but I figure I should share our experience, for what it’s worth.

I have told part of this in The Wayback Machine but it bears repeating, especially in light of the new study.

When Jonah was just 6 or 7 weeks old – before his first vaccination – I brought him to a well baby visit with my wonderfully compassionate and intelligent family doctor, Jacob Reider.  Within a minute of greeting us, he looked carefully at Boo and, very gently, said, “hey, buddy…there’s a human in here” – and waved his hand slowly over Boo’s face.

“What is it?” I asked, the nervous first-time mother seeing nothing at all wrong with her child.

“Infants look at faces,” he told me.  “They love to look at faces.  Jonah is staring at the lights.”

With growing anxiety I recalled that Andy and I had already nicknamed Boo “moth boy” because he loved to look at lights so much.  We were amused by this and nothing more, but Dr. Reider was frightening me, and I expressed that immediately.

“Should we be concerned?” I asked.  He did not panic me — he told me not to worry, that we would keep an eye on Jonah…and we did.  When he did not speak (or seem to understand or communicate) by 18 months we had his hearing tested (no problems there) and then we were immediately placed in the early intervention system, where speech, occupational, and special education teachers came to our home twice a week or so to work with our son.

I was lucky enough to be a stay-at-home mother, so I was there with them as they brought toys and tools to help Jonah.  I believe if it weren’t for our careful, observant doctor, we would never have gotten such early intervention.

By the time Jonah was 22 months old, he was diagnosed with autism by a cold, flat-voiced female developmental pediatrician.  It was a day I will never forget;  I sobbed in my car for a long while before I could drive us home.  I got a second opinion from another developmental pediatrician and, in a much more caring manner, he confirmed the diagnosis.

I  believe that, if presented with 50 one-year-olds, I would have a decent degree of accuracy in picking out the ones who are on the spectrum, just by spending a few minutes with each.  Why?  Because hindsight is 20/20, and now I remember all kinds of signs.  And although I don’t believe all of these things about Jonah indicate autism, they are all things that stood him apart from other babies, almost from the very beginning of his life.

Jonah was vastly different from other babies.  He grunted a lot (we called it growling) almost since the day he was born.  He appeared to be trying to say “mama” as the months went on, but he only could call me “em.”  At ten months old, he was still not talking, and my mother chastised me:  “Why aren’t you teaching him his words?” she demanded.

I was left feeling scared, inadequate as a mother, and desperate to figure this out.  I read to my son.  I cuddled him, loved him with all my heart, tried to teach him.  I felt a phenomenal failure, I had baby blues, and my best friend suicided by shotgun when Jonah was 5 months old.  In short, I was a mess.

Jonah did not play with his toys correctly.  He turned all his Matchbox cars upside down and spun them on the table.  He spun anything he could, including himself, once he could walk on his own (very early, at 8 1/2 months old).  He enjoyed destructing block towers but not building them.

He wanted music, lights, adults, nursing (I nursed him until he was 15 months old) and water — pools, the ocean, his bath — but he ignored other kids as if they were mere obstacles.

And once, when I wanted to try to teach him the word “plane” and there was an airplane overhead, I held him in my arms and pointed to it.  “Look, Jonah, there’s a plane in the sky.”

He stared at my finger, not to where my finger was pointing.  I felt a chill run up my spine.

At one friend’s child’s first birthday party, he refused to leave the entrance, obsessed with opening and closing the screen door.  When we left early, a friend’s 9-month-old son waved and told us “bye bye” — and I deemed the kid a genius.

Of course after enough of these eccentricities in our son became apparent, we knew something was wrong.  The interesting part is I dismissed autism as a possibility together.  I mean, “those kids” crouched in the corner rocking.  They were non-responsive and un-affectionate.  They banged their heads on the wall.  Ignorance.

Our son was engaged, cuddly, and never acted in any way I would have called “autistic.”  He was born so perfect looking and seeming.  We’d won the risky lottery of baby making, avoiding Down’s Syndrome, birth defects, preemie problems, and any other life-threatening or frightening newborn realities.

And so his ultimate diagnosis was a knife in my heart.

Anyway, I do think early detection in infants may be possible.

You need an observant, caring, special doctor, but you can also look for signs on your own.  Don’t be paranoid, but don’t go into denial either.  Never underestimate the power of denial, to quote the Ricky character in the movie American Beauty.

Remember your child is always your child, and the diagnosis will never change that or define him (or her).

Of course if you have met one child with autism, you have met one child with autism.  All these things may or may not apply to other kids.

I just wanted to share our experience, in light of this new study.

If you feel alone, unsure, or just want to e-mail/chat please don’t hesitate to reach out to me.

More about Boo soon.  There are still “winter card” boxes with his card design included, and you can buy them here.  They make great non-denominational holiday cards.

Thank you!

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