Vexations and tribulations…

Ladies and gentlemen, Growling J has made a comeback.  Yes, that particular cause for parental consternation has returned, and not just at home.  It is a source of teacher consternation, too.

HOW did this happen?  I have a name for you, and you might think (but don’t judge me harshly, please) that I hyperbolize: TGG.

If we backtrack to a recent post, your memory will be refreshed: TGG is in love, has been lax in his studies, blah, blah, blah.  Yes, I remember he’s 24, but I will also remind you -if you’ll kindly allow me to- that ours is the abode in which he currently sleeps five nights out of seven, ours are the refrigerator and pantry that provide the bulk of his meals, ours are the funds that paid for his classes and books, and ours the utilities that he freely partakes of on a regular basis.  These things, of course, are not something we are obligated to provide since he is 24 and flies the flag of independence and autonomy at his convenience.

My father, in his most colorful and blunt way, often said “we each make a whistle of our asshole” to indicate that we can each view our situations and make our decisions as we choose.  TGG may be hearing whistling…we are smelling otherwise.

Bear with me…I know you think I’m overreacting, and maybe (I will grant you that much) I am tapping into the deepest overbearing mother tradition to which I am connected by my status as a Hispanic woman.  This is the thing: this past week, J saw TGG on Thursday night and didn’t see him again until Monday afternoon.  Isolated incident you say?  How about this is happening every weekend???  With nary a word, nary an explanation, nary an acknowledgement, TGG waltzes out, does his thing all weekend, and then returns Sunday night.  On this particular Sunday, TGG didn’t get home until eleven and J was in bed and asleep.

I will tell you the same thing I told TGG yesterday: it’s not “don’t live your life,” but rather “don’t completely blow off your brother in the course of living your life.”  For some reason (love????,) TGG has completely forgotten that his brother is a part of his life, and has been a part of his life for nearly 21 years.

Yes, my friends, we all do it.  We fall in love and the yearning for the other person’s company is overwhelming.  Why do homework when one can pine?  Why clean the bathroom when one can ponder?  Why sleep at home when one can potentially traumatize toddlers that don’t know if you’re daddy, a prowler, or some dude that mommy is sleeping with?  (It is now clear to you all that I don’t understand my son’s generation.)

I don’t want TGG to take over the care and maintenance of the emotional machine that is his brother.  I am responsible for J; Dada is responsible for J.  As the legal guardians of J, we simply hope his older (and supposedly adult and mature) brother will understand that the acquisition of new affections doesn’t render null and void the ones previously existent.  You also don’t disappear for a whole weekend (we don’t know where this girl lives, and he turns his cell phone off while he is there…rendering himself unreachable in case of an emergency, and us clueless in case the emergency is on his side,) and then come home and act totally excited about steak, pasta and vegetables for dinner.

After a moderate growling and SIB incident on Sunday evening (which had been building up since Friday evening when J hadn’t heard a word or caught a glimpse of his brother since the previous night,) I sat TGG down yesterday morning.  I asked what the deal is, and when he is moving out.

Why did I ask that?  Well, TGG has said that he and his girlfriend are looking for a bigger place to share with her children and her brother.  TGG’s twin-size bed will be repurposed for the brother.  The bookcases, oh, they will fit in with the pre-existing decor.  Commuting won’t be an issue.  Blah blah blah…  Yesterday’s answer to my question?  “I might have misunderstood what she was saying before.”  I had been attempting “coolness,” and it turned into this:

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In the wise words of my female ancestors, I told TGG to either comb his hair or put it in pin curls.  This (o te peinas o te haces papelillos) is a familiar saying in Puerto Rico.  It means “make up your mind.”  I said it in Spanish.  TGG knew I meant what I was saying.  He interjected with “well, we’ve only been dating a month.”  That tidbit prompted this:

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And then I went into full-blown this:

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I explained to my 24 year-old that having sex isn’t dating.  I explained to him that commitment doesn’t hinge on whether your stuff matches the decor.  I explained that making a life with someone is not as easy as it looks in movies, and that our family life is being deeply shaken by his  lackadaisical approach to “acting like a grown-up.”

I explained that, no, J doesn’t need him around 24/7, but that not having done a thing with him in weeks shows a lack of understanding for his brother’s emotional needs.  I reminded him that he has a son he hasn’t seen in a month, and NO, it’s not everyone else’s fault that he chooses to do things in such a self-centered way.  He tried to blame it on work.  He tried to blame it on school.  He tried to blame it on his previous employers.  He would’ve blamed it on Lee Harvey Oswald but the timelines didn’t match.

I reminded TGG that one of his complaints regarding his biological father is that he simply left.  He forgot about his kids while still trying to keep a stranglehold on their affection, a guarantee of loyalty and identity in their minds.  I explained that, to a lesser degree, he is repeating this pattern; when he’s here and he has a moment for J, he expects J to be responsive and grateful of the attention, but the rest of the time, he doesn’t give his brother’s feelings much thought.

J doesn’t want to be forgotten, or ignored.  J doesn’t want to be treated like he doesn’t understand.  J is very present, and he feels upset when things are not explained to him because his ability to process them is underestimated.

I don’t know how much of this sank in, but yesterday TGG came home from school directly, spent time with his brother, read him a story, and this morning he made a point of saying “good morning” and kissing him before he left for work.  Maybe he understood me, or maybe it’s just that his girlfriend told him that since her brother and her mother will be living with her, there won’t be room at the inn for him.  We’ll see…I am still skeptical about “coming to Jesus” and consulting us for everything during a 12-hour span.

I know TGG has to have a life of his own, but I wish he would opt for a certain quality of life, emotions, relationships, aspirations.  I don’t mean I want him to own a McMansion with all the bells and whistles, or even marry Jennifer Lawrence (which would be nice…J would like that,) but that he sees a future that doesn’t involve patching up a lifeboat and throwing a tarp over it to say “at least it floats???  For now????”

And I want J to face all his transitions with as much grace as possible.  And for those who are near and dear to him to be as kind and understanding as we can be of his needs and anxieties.  Isn’t that what every mom wants????

Call me crazy…

I have, from time to time, toyed with the idea of regretting my decision to be a stay-at-home mother, a professional mother, a mother for the ages.  This hypothetical regret is so very fleeting, and so very banal that it doesn’t even sit in the back of my mind.  If you ask me, I will tell you immediately and unequivocally that I have loved being a mother, and that I consider my dedication to my children, the most important thing I’ve ever done…

I actually no longer feel that way.  I feel like I made a terrible decision, and I failed miserably.  And, no, this is not a flight of whimsy, a “oh, poor pitiful me” moment.  This is a resounding call from deep in my gut.  This is like a stone bouncing violently against the walls of a deep and wide metal container…clank, clank, clank…

This is not about J.  I fail J every single day, and I know it.  I am at peace with this because parenting an individual in the Spectrum, as I’ve mentioned many times before, very much like Sisyphus and his rolling boulder.  More often than not, I am run over by the boulder, recover, chase after it, and then start up again.  As they say out there: it is what it is.

My issue is with TGG.  Our issue.  We are all pretty much overwhelmed.  Dada and I spend so much time trying to figure out TGG that we have realized it’s taking time away from J.  That, in of itself, is a clear indication that something’s gotta give.

We have been, as far as parents go, far from perfect.  We’ve tried to be encouraging, understanding, supportive, loving, caring, patient, all while trying to foster in our children a sense of self and the proper environment for maturing at the proper pace.  I’ve made Halloween and theater costumes; I’ve not missed a single performance, parent-teacher conference, doctor’s appointment, summons to the principal’s office.  I’ve kissed boo-boos, dried tears, said “buck up and try again” when needed.  I have been very responsible as a parent; I’ve taken this whole process seriously.  I married a man who takes it seriously, too, and if we have been stern from time to time it’s because we have had to be.  We set curfews; we grounded people (yes, even J…not that it worked particularly well,) and canceled privileges.  We also struck a balance between the practical things and the fun things.  We’ve always encouraged our kids to talk to us…even if we don’t like what they have to say (or sign.)

In a very broad sense, TGG has been an awesome kid.  He never really got into trouble with the law, although some neighbors once called the cops to say he had thrown an egg at them.  The laws of physics proved to the cop the improbability of that having happened.  Another time, some friends who were in the car with him pointed a BB gun at other vehicles, and the cops were called.  They were quickly caught…because TGG drives like a little old lady.  The other kids, who had previous legal issues pending, were carted off, and TGG and J (who had just been picked up at school) were sent home with a stern warning.  There were several instances of underage drinking that we were not particularly pleased about, and we certainly didn’t go easy on him then.  The cure for that was pretty much turning 21.  There was the pot smoking we never caught him doing, but being former young people we clearly recognized, and that, too, went away.

The main problem with TGG is that he hardly ever finishes anything.  What he finishes, he finishes with the least amount of effort possible, and with the least stellar results imaginable.  TGG barely graduated from high school; the class that almost sank him?  BAKING!  TGG almost finished his EMT certification course.  He choked on the next to last test…and that was the second time around taking the course.  (When I say choked, seriously, he was totally overconfident and underprepared for the test…and once you failed a test for a module, you were out like yesterday’s leftover fish.)  He did finish his Medical Assistant certification course, and he passed his test, but…his grades dropped vertiginously once he “fell in love.”  That romance lasted six weeks and resulted in one grandchild…

We didn’t kill him when we found out, via misdirected text, that he was about to become a father.  We were understanding.  We were caring.  We were patient.  We were supportive.

TGG loves his kid.  His son, though, is not a priority, and -worse yet- he’s not a driving force in TGG’s life.  TGG hasn’t yet understood that having a child changes your life, and that you have to start thinking like a grown-up and make difficult decisions.  TGG still wants to have his cake and eat it, too…

When TGG decided to go back to school to start working towards a degree in Nursing, he was motivated, and we were thrilled.  We paid for his classes and books; we told him not to worry about rent or household expenses so that he could switch to a job that would accommodate his class schedule without putting too much strain on his finances.  We helped him reorganize his room, and we made sure he had the clothes he needed for his new job at Target.  During the time when he wasn’t yet getting paid, we made sure he had gas money.  We made sure there was dinner served for him when he got home.  We took over all the things he used to do with TGG.

And then…

He has fallen in love.  Every single person in the planet deserves to have someone who loves them, and who they can love.  Every single person deserves happiness.  Good judgment often flies out the window when it comes to these things, and it certainly has in this particular case.

TGG has “fallen in love” (and other things) with a very young single mother of two.  When he’s not at work or at school, all he lives and breathes is this person.  She is the center of the universe because she is “patient” and “nice.”  We, on the other hand, are demanding and he doesn’t know how to please us.  We explain to him, ad nauseam, that we want him to study, to work on getting a decent footing before he starts running into the future like a desperate linebacker during the Super Bowl…and without a helmet.  But he’s in love.  He’s getting two Ds, one C and an A (in very basic classes, mind you…this isn’t even Nursing coursework,) and he doesn’t know why this is something we might be worried about.  He had to take the entrance exam to the Nursing program…he dragged his ass for months, and then he passed everything but the Science.

He doesn’t understand what we “want.”  He doesn’t know what he could “do” to make us stop worrying.  I’ve stated my position clearly: it’s time for him to move out, face the world as it is when your parents aren’t there to catch you when you fall, and learn a little bit about what it takes to be what we are: grown-ups.  He thinks, bless his soul, that I’m bluffing.  The fact of the matter, and hate me if you must, is that I am NOT bluffing, and I am ready for my partially-empty nest and a little more peace of mind.  Rather, I am ready to worry about him from a distance, without actually seeing the way in which he thinks everything will work out just right if he just lets things happen.

Am I wrong?  Am I a bad parent?  Am I being mean?  Am I too old-fashioned?  Am I positively medieval?  Is it ridiculous of me to wonder how two twenty-somethings with children from failed relationships can jump so very quickly into a potentially child-inducing situation?

This affects J.  I know it shouldn’t, but it does.  J loves his brother.  J misses his brother.  His brother has barely given him a second thought in the past few months.  TGG spends more time with the girlfriend and her children than he does with his own kid.  Am I stupid to think that this is just not right???  Didn’t he learn from the heartache his father caused him with similar behavior and attitudes?

Our suspicion that he has Asperger’s is being solidified with each passing day.  There is a disconnect there.  There is a lack of emotion.  HE can’t seem to read the signs that we so clearly put out…so very clearly…oh, so so clearly.  He’s just baffled by our frustration and disappointment and concern.  Last night I blew up and told him I’m done, and I mean it…I can’t risk a stroke like my mother had at 56 and my brother had at 55.  I have J to think of, and TGG is, after all, a full-fledged adult…

Any thoughts?????

The Second Week of School…and the weather starts to change…

This is no longer SUMMER!  We are now is the milder, declining days of the season.  There is, in spite of the weather forecast, a dulling of the green leaves, a ribbon of coolness in the air, a softening of the light that are harbingers of AUTUMN!  We are in Summer Light…sort of a gluten-free, fat-free, sodium-free, sugar-free version of the season.  It has been repackaged.  The look has changed, and so have the ingredients.

Our tomato plants are ignoring this new data.  They are producing more tomatoes than any human family can consume with ease.  Our chili peppers are still doing calisthenics.  The rest of the garden is looking more muted, more willing to relax in the coming weeks.

J has settled nicely into school.  All the reports I’m getting say that he takes his thumb immobilizer off to work and eat, and since he is continually occupied with something, the brace is off most of the day.  He seems ok with this arrangement, the teacher tells me.  I am happy to hear this.

J is also adjusting to the new schedule TGG has.  For the past two weeks TGG has been home all day, waited for J to get off the bus, and then left for class.  Since his class schedule doesn’t allow for weekday workouts, TGG has been taking J to the gym on Friday, Saturday and Sunday, and the rest of the week, J is happily committed to the elliptical machine in our garage.  He watches movies while he exercises, and we do our best to keep up with his pace.  We are sorely out of shape.

Tomorrow comes yet another change in J’s environment.  TGG has a new job.  It’s a little outside of his field (ok, A LOT outside of his field,) but it does accommodate his school schedule and the pay isn’t bad and covers his main expenses.  This job will also elevate him to a near-deity status with J because TGG will be working at Target.

Yes, the home of Bullseye the Mascot.  J’s favorite store.  The place where we can easily be found on weekends walking the aisles in the same exact pattern as prescribed by our lovely youngest son.    We haven’t told J.  He doesn’t even know that TGG interviewed for this job.  He doesn’t know that TGG will be donning the red and khaki threads of a Target employee.  What J will do when he realizes is something we’re all on pins and needles about…

Our guess is that J will be more than happy to visit his brother at work, promptly plunking down money to make sure the company stays in business.  Our guess is that J will expect TGG to keep Bullseye under control.  Our guess is that the older brother that is already viewed as something of a superhero will be seen with something of a halo surrounding him.  I am hoping for an employee discount, but more than anything I’m happy that TGG has a job.

For the past two weeks, the same kid who flatly refuses to get up when asked has been getting up early and interrupting my brief restorative shut-eye from 8 to 9 a.m.  I’ve opened my eyes to be startled by his bright smile and a chirpy “what do you need me to do?????”  I’ve sent him to the gym.  I’ve sent him to vacuum the TV room.  I’ve sent him to check the mail and take the trash.  I’ve asked him to gather the laundry and start that chore for me.  The same 24 year-old who usually drags his feet when asked to hand me a spoon while I’m cooking has completed every task in record time.  Today I asked Dada if it would be unseemly for me to call Target and beg them to cut to the chase and give him a schedule.

I almost cried when he hung up after speaking to his manager and said “I have to be there at 8:30 tomorrow!”  By my calculations (which I made faster than any of my Math teachers ever thought possible) that means I have to wait until he calls to say he made it, and then I will have an uninterrupted hour to prepare myself for the daunting task of managing this household.  I looked at him and said: “oh, so soon?”  The look he gave me told me unequivocally that he knew I was putting on an act.  It was sort of worth the try…

So the kids are settling in, and they’re not kids anymore.  The nest is properly feathered, and it’s still full of birds, but I’m satisfied that we’re slowly getting into our respective grooves and we’ll soon figure the little bits and pieces of the whole new order out.  J is settling in nicely; J is happy; J has actually become more adept at negotiating and accepting things at school, and maybe it’s because he knows it’s the last year.  Maybe it’s because I look ragged and tired and middle-aged, and he wants me to know he cares, but…maybe it’s really because he wants to have a good year.

We’ll see.  It’s early days yet.  Twenty-seven days to AUTUMN! and the skinny, weak side of summer is slowly unraveling.  Yes, yes…temperatures in the 80s next week, but we had those last week and they lacked the usual bite.  Let’s face it…it’s almost over.  We’re about to go back to boots and sweaters and jackets and scarves and soups and stews and pumpkin and blankets and cocoa.

It’s ok.  It wasn’t The Most Fantastic Summer Ever, but we made it through and we learned a lot.  We picked up a new friend (the brace,) and lost a few others (patience comes to mind.)  We are here on the other side of the last ESY, and on the opening bars of the Last School Year Ever!  I’m sure we’ll slip and fall, and we’ll get overwhelmed before it’s all said and done, but so far we’re humming…

Little pitchers and all that…

As we know, the Thursday before ESY started J had to go to Urgent Care because his thumb hurt.  The X-ray indicated there wasn’t a fracture, but there was a sprain of some sort.  The doctor fitted him with a thumb immobilizer that has become J’s best friend and confidant.  Add to this his penchant for wearing band-aids for no good reason other than to remind himself that he’s alive and breathing and you get a pretty alarming picture.

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We’ve had the same bus driver for 80% of the time J’s been attending school here in WV.  By now, four years and multiple bandaids later, she should know that our son has a flair for the dramatic.  This is the kid who will buy bandages EVERY SINGLE TIME we go shopping.  I’ve told Dada to invest in Johnson & Johnson since we’re helping keep the company going strong.

Anyone here have a child in the Spectrum who isn’t comforted by deep pressure?  Compression garments?  Weighted blankets?  Pillows piled on top of his/her body?  Cocooning?  Individuals in the Spectrum feel comforted by these things, and J is no different.  That he takes it to the point of looking like a Civil War walking wounded is an entirely different matter.

If you’ve never seen J and you witness this “look” of his, you’ll wonder what is wrong.  If you ask, I will gladly explain the whole thing to you, especially if you’re uninitiated in the intricacies of Autism.  I will even, if you feel that my explanation is insufficient, invite you to call the proper authorities so they can do an investigation.  I KNOW what it can look like to those who don’t know what J is like.

There’s another little quirk of J’s that poses a problem: echolalia.  J will repeat the very last thing you said, and this can be considered leading the witness.  If you, as an adult who should know he’s in the Spectrum and has trouble communicating, ask “are you hurt?,” you will get HURT as a response.  “Again?”  will get AGAIN.  If you ask him “was it a rampaging elephant?” J will respond with ELEPHANT.  I don’t mind people asking him, showing him pictures, asking him to point as long as they understand that J doesn’t have the complete ability to answer spontaneously 100% of the time, and that you are probably leading him to the answer you want.  That is why, when we go shopping, and he points to a general display of items, I tell him FIND THE ONE YOU WANT.  I step back, and I wait patiently until he gets that he is the one who has to choose.

Asking a question about whether he is hurt again in front of a busload of special needs students who might go home and say “J is hurt again” is not a very good idea.  Some kids will repeat what they hear.  Other kids will embroider and filigree what they hear.  It might not happen, but it also MIGHT happen.  It’s a possibility…

Every single person that works with J is welcome in our home.  We actually make a specific invitation to come and see how J lives, what our set-up and our system is at home, what our expectations are, and how he navigates it all.  We remain in constant contact with staff from school, and we try to make sure they understand what we’re aiming for here.  Whether they take us up on it or not is entirely up to them, but we wouldn’t ask if we didn’t mean “come over and see what we do.”

I love when people are genuinely concerned about my son’s well-being because it tells me they care, and they will tell me if something seems fishy.  I don’t mind people asking me questions, and wanting to make sure that he is being treated properly and respectfully.  What I do mind is when people call out, from inside the bus, asking J if he is HURT AGAIN!!!!???? in front of a busload of impressionable kids who cannot process the situation with the clarity of their neurotypical peers.  None of these kids can ask J “hey, dude…are you ok?  Is something happening at home?” and then -as concerned friends- take it to a grown-up for follow-up.  These kids can only repeat it at home in a way that their parents won’t be able to interpret based on their knowledge of us, and of J.

Discipline doesn’t mean mistreatment, and we don’t take advantage of J’s inability to communicate when we scold him.  We explain why we’re upset, and we do our best to get him to understand when he’s done something inappropriate, dangerous, risky, rude, and so on and so forth.  Our biggest problem, perhaps, is that we work gradually to wean him off the comfort items he cherishes and we respect what they mean to him.  I always let teachers, staff know when he’s really hurt, and how serious it is; I always inform the teacher if he is sick, and what treatment he is undergoing.  I don’t do this because I am afraid of misunderstandings but rather because J cannot explain for himself how he’s feeling or why, and what’s being done to help him.

I am J’s voice, and I will speak for him when I have to, but I will also allow others to question what I say because I have nothing to hide.  Echolalia is a dangerous thing because not everyone understands how to ask questions of a person who resorts to it rather than to spontaneous speech, and J’s privacy should be respected even in cases of extreme concern for his safety.  A neurotypical child questioned about his/her well-being and safety will not always be upfront about the situation, especially when it’s done in a public and potentially (to them) embarrassing manner.  Asking the child/adolescent/adult in a more private setting, establishing an environment of trust and safety will create a better opportunity for sincerity and confidence.

J’s fine.  He’s healthy.  His thumb has healed and we’re working with the timer so he leaves his beloved thumb immobilizer off for short periods of time throughout the day, BUT he does feel his hand needs to be controlled.  I don’t know why…maybe it’s hereditary OCD, or maybe it’s that splash of bipolar disorder that dwells in my mother’s genes as passed down through the generations.  I have to respect what he thinks that brace is doing to protect him from himself…and I will work on alleviating his concerns in any way I can.  If, for the time being, J thinks the brace is necessary, then the brace is necessary.  It may very well be that it goes the way of the boxing gloves, the Rasta hats, the whole milligram, the three-quarters of a milligram, the half of a milligram of med…or maybe, like Slinky, it will stay as part of his everyday needs and supports.

I can live with that.  I accept that it’s the way it is for now and might be for a long, long time…  But ask me, please.  Don’t assume and unwittingly spread that J might be in danger…  Ask me.  That’s what I’m here for…

The Mother Who Invented Autism

My mother used to say, of young mothers who had “newfangled ideas” about child-rearing, that they thought they’d invented motherhood. I always found my mother’s attitude surprising because, technically, she didn’t raise any of her children; we were raised by grandmothers, aunts…my mother chose Pedagogy over Motherhood, and her area of expertise was teaching teachers how to be teachers…

A few years into my mothering experience, my mother told me that I thought I’d “invented Autism.” That, I hate to admit, was the closest thing to a last straw in our relationship. We didn’t really recover from that before dementia took her into a realm where she is, thankfully, happy and no longer judgmental.

Fourteen years have elapsed since that ill-fated conversation. I didn’t have a cogent response to her argument then, and it’s taken me years to understand what she (sort of) meant and (sort of) empathize with her views.

I’d like to clarify that I’m not launching into a tirade about my mother’s opinion of my parenting style. I think my style and hers are so far removed from each other that comparing them is unfair. While my mother’s generation burned bras and fought for equality so that they (and their daughters) could have it all, I -much to my mother’s chagrin- chose motherhood over career. Mind you: I wouldn’t have had much of a career in the first place so, in that sense, it was a no-brainer. I’m not saying I chose motherhood over career because I didn’t have a choice, but because I actually (for some insane reason) feel committed to THIS.

I didn’t invent Autism. It landed on me, dropped from the ether by some mysterious force that I cannot identify or name. It wasn’t there one day, and the next it was. I didn’t invent Autism, but Autism sort of invented me…or transmogrified me.

The reason first-time mothers think they invented motherhood is because of the transformation that takes place. We KNOW, when that first baby pops out, that we have been transformed, and we feel baffled and empowered in equal parts. I remember often putting down Dr. Spock to ask myself “how come I don’t KNOW this already?” When TGG was born, I was pretty sure that I knew what to do, but I was not going to baldly admit that I was terrified of screwing up royally. My aunts, blessed women who were old enough to be grandmothers and had dealt with cloth diapers, no running water, no protocol for introducing cereals to determine allergies, no formula, were the only people I trusted to tell me how to go “about it” in a way that wasn’t dictated by my pig-headed, first-time-mother arrogance.

When Autism landed, I didn’t have the benefit of “been there, done that” wisdom to guide me. I was alone. What I knew of Autism came from reading papers students wrote for my mother’s classes at the university. When I tried to suggest to people who might help me that J was autistic, I was basically told that I was imagining things, comparing him to TGG, and making an attention-seeking mountain out of a molehill…

J was assessed by neurologists, Autism specialists, school district personnel. In the midst of my shell-shock (because Autism came with a devastating hurricane, a divorce, and a relocation to an unfriendly environment) I couldn’t really GRASP all that was being said to me. All the clinical mumbo-jumbo was designed to give me the grim news, the grimmer prospects, and the grimmest sense that I was (pardon my French) fucked.

Nearly nineteen years have elapsed since that morning when J stopped being the kid I’d known all along. Did I really know him? I am not so sure now. There was always something different about him when compared to TGG. That is what the pre-diagnosis world latched on to; I was (unjustly) comparing one kid with the other, and finding him wanting. In truth, my friends, I found J baffling, confusing, difficult, mysterious, undecipherable.

Sixteen years have elapsed since the proverbial bell was put on the cat. The transmogrification was immediate; I went from sort-of-have-it-together-mother-of-two to I-don’t-have-a-clue-mother-of-two. The self-flagellation has stopped over the course of time.

Self-flagellation? Don’t tell me you don’t do it too. You, from time to time, think you’re screwing up so massively that you don’t know if laughing or crying is the correct response. You, like me, at times wonder if you will EVER figure out the one little thing that seems to trip your kid (ok, grown-up child) up. It is no secret that I am in an almost perpetual state of confusion.

Sometimes I wonder what it was like for the first mother of an individual in the Spectrum. Who was she? When and where did she live? How did she cope? Autism didn’t have a name then. It was probably considered madness, or some sort of enchantment. The tantrums might have seemed like violent trances. The self-injury the work of the Devil. Children were abandoned on hillsides to be eaten by wolves for lesser, albeit more visible to the naked eye, extraordinariness.

The obstreperous behavior of children in the Spectrum before there WAS a Spectrum might have been easier to deal with because there were less people to judge your parenting skills. The isolation the parents and child feel from the rest of society might have seemed less marked because people were not as socially connected as they are now. These days your kid can’t have a meltdown without someone potentially putting it on You Tube, or writing about it on Twitter, or sharing it on Facebook.

Back then there were no PECS, ABA, IEPs… The mother who invented Autism probably didn’t even realize that she was in an extraordinary parenting circumstance. She might have been surrounded by a lot more children than she could reasonably handle, and didn’t have time to dwell on the situation.

I also wonder about Charlotte “Lala” Bill, nanny to Prince John of the United Kingdom. Prince John, son of George V and Mary of Teck, was epileptic and exhibited signs of an intellectual disability and possibly Autism. The solution, in this early-20th century, royal scenario, was to isolate Prince John; while it’s been argued that the family was unfeeling, it seems that -aside from the upsetting nature of his conditions- it was safer for him to live in Sandringham with Lala Bill caring for him. Did Lala Bill stop to think how overwhelming all this was? Until all the tools and resources came together recently (in the great scheme of things the 20th century is equivalent to last week, isn’t it?) none of the women who preceded us knew what they were up against.

No one asked them if they thought they’d “invented Autism” because the darned thing didn’t have a name until “last week.” If they were criticized it was because they didn’t keep house well, their children weren’t turned out properly, and so on and so forth. Perhaps people wondered if their child was possessed and why had this befallen this particular mother. I’m sure these mothers wondered the same thing; I’m sure in the midst of life and all else, they stopped to almost dwell on it, and then they realized it was pointless. Their wisdom, if they had any to impart considering how busy they were with life and all, is lost to us…unless “spare the rod and spoil the child counts,” which I hope we’ll totally skip.

We all think, despite abundant evidence to the contrary, that our situation is special, exclusive, extraordinary. It is. Autism is a Spectrum Disorder, and the way it affects each individual, each family is special, exclusive, extraordinary. When we compare notes, we sometimes say “my son/daughter does that also.” We say it with surprise and shock seeping into our tone, as if we can’t believe someone else might be able to understand where we come from, and what we go through. We start feeling not-quite-so-isolated…until someone offers advice or empathy based on experience.

Mind you, this doesn’t happen every single time, but there are neophytes (meaning recently-diagnosed families) who think they can see ahead farther than the spot from which we (the older, more experienced veterans) are standing. I try to clarify that I am not giving advice, insights, information, suggestions, anecdotes because MY/OUR way is better than whatever it is people are currently doing. I try to clarify that there is a lot I/WE don’t know, and a lot more still that, when it works for J, baffles us because it is SO unexpected.

I try to make sure that people know all the feelings of confusion, anger, frustration, sadness, loss, hubris are normal. I, too, have felt like the caveman (or woman) who discovered fire one moment, and like the skipper of the Titanic the next. People seldom listen to that part, and the truth is that they will in time discover (because Time teaches us all) that they didn’t just NOT invent Autism but that they were re-invented by it. In that sense, us old-timers are like the grandparents who sit and watch their kids make every mistake, fall prey to every folly that we, in turn, were warned about by our elders…

Somewhere in the convoluted weave of the fabric of Time and Space, the Mother Who Invented Autism is chuckling at all of us, and rightfully so.

No, no, Jim Carrey…you lost me

Oh, Jim Carrey…

Do you want to come over to my house and see an autistic kid?  I know you’ve seen kids diagnosed with Autism before, but I want you to see an individual who has been living with an Autism diagnosis since 1999.  Come on.  Come and see it first-hand in a home where we believe in vaccines.  Come and see it in a home without nannies, special therapies, book-writing, celebrity…

You lost me, dude.  I believe you are entitled to your opinion, but then you posted a picture of a kid having a meltdown without that child or his family’s permission.  And you lost me…  Lost me forever.

This is the thing, Mr. Carrey, sir…  Who gave you the right to use a child (anyone’s child) as a poster child for what other people shouldn’t want in their home?  Because that’s what it boils down to: people don’t vaccinate their kids because they don’t want autistic kids.  Oh, that’s the Big Bad Wolf right there…  Having an autistic child is the end of the world.  It’s the biggest curse.  It’s the worst that could happen.  It’s the biggest failure and burden a parent could face.

Beware having an autistic child.

You don’t want one of those.

WHY would you want one of those?  You could have a perfectly “normal” child, but instead you’d get an autistic one.  And you don’t want one of THOSE, do you?

Let’s bring back measles.  We’d rather have THAT than Autism.

OK, let’s clarify: “I am not anti-vaccine. I am anti-thimerosal, anti-mercury. They have taken some of the mercury laden thimerosal out of vaccines. NOT ALL!”

I know you have battled depression, and you have completely eradicated stimulants from your life.  I understand that.  Kudos to you.

Stimulants like coffee, though, are not airborne and contagious.  Have you had the measles?  If you haven’t, then, it’s probably because you were vaccinated.  You’re exactly three years older than I am, and I haven’t had the measles either.  I haven’t had chicken pox…I haven’t had any childhood illness, in fact.  I also don’t have Autism.

My youngest son, though, has Autism.  He’s 20 years old…he’s a pain in the ass.  If genetics are to be trusted, he would be a pain in the ass regardless of his Autism.  He gets it from his biological father.  In truth, he also gets it from me.  The Autism, it seems, is also passed down through the father’s side.  There are studies on this possibility; he also has a paternal half-brother who is autistic.

You have a daughter, and you’re a grandpa, aren’t you?  Did you vaccinate your daughter?  Did you persuade your daughter to not vaccinate her child?  I have a grandson.  I made sure to tell his mother to please vaccinate him. I also made sure to tell her that she needs to keep an eye out for any signs of Autism, but that if those appear we’ll work on it.

I’ve been doing this a very long time, Mr. Carrey.  Our little family has experienced quite a bit.  Self-aggression, regression, echolalia, hypersensitive hearing, behavioral problems, emotional rollercoasters that last several days.  It’s exhausting.  We just took our first family vacation in thirteen years.  It could’ve gone better.

Our son is handsome.  He is smart…in his own way.  He is moderately mentally retarded, autistic, non-verbal, and possibly bipolar.  Some of those things he gets from both family trees; some of those things just happened.

We have had to adjust our Christmases, Thanksgivings, birthdays, vacations, selection of a home, a town, a job to our son’s needs.  We can’t have a dog, not even an assistance one.  We were medication-free for the first fifteen years of his life, and now we’re down to very little medication, but we might/might not be needing more.

We have sat through countless IEPs, appointments with psychiatrists, doctors, teachers, administrators.  We have had people tell us that it’s the gluten, that it’s the vaccines, that it’s all in our minds and we’re lazy parents.  We have been told that all he needs is a little more discipline.

Over the years our son has had pneumonia, gastroenteritis, conjunctivitis, seasonal allergies.  He has needed dental surgery.  He currently has a sprained thumb and is walking around like his brace gives him Iron Man’s powers.  He wasn’t toilet-trained until the age of 8, and he doesn’t speak except seldom and you wouldn’t understand what he’s saying.  He uses ASL and he has a neat app in his iPad that allows him to tell me what he wants, even if this is “fuck off.”

My husband and I have grown old taking care of our son.  We have spent more days not traveling like other people than we can count.  We have declined invitations to events because finding a sitter is a bitch and a half.  We have raised our oldest to be his brother’s primary care giver when we’re no longer around.  We spend more money at the arts and crafts store than we would under different circumstances.  We order toys that are appropriate for younger children from Amazon, and we laugh at the collection of Madeline dolls our son loves.

Life is an adventure.  It is complicated.  It is difficult.  It can be downright tedious.  There are times when we wish we could run away to Spain and live in a rundown villa surrounded by olive trees…but we don’t know if our son would enjoy getting on a plane.  We also cannot afford this because that’s the way life is…

No toxins.  I get it.  I agree.  Some pretty noxious crap is put in things that shouldn’t have it.

But that doesn’t give you, or anyone else, to hold up a child in the Spectrum as a cautionary tale.  It doesn’t mean you can say “hey, this is so bad you don’t want it in your life.  Avoid it like the plague.”  When you post a picture (and I KNOW you apologized, you lovable lug, you) of a child having a meltdown while ranting about how bad toxins in vaccines are, you’re telling other parents “fear this!  Avoid this!  This is BAD!”

Isn’t it bad enough that people sometimes look at us funny when our son doesn’t act his age and size?  Do you think sharing our experiences (in conversations, this blog -anonymous though it is-) is easy?  We’re not trying to scare people, sir.  We’re trying to share what we go through so that, should this same thing appear on your doorstep overnight, you can see that we navigate it as best we can, and it makes for choppy waters, but it doesn’t sink us.

The Echols family has been gracious.  You’re lucky.  You made a spectacle of their child for your own purpose, and you know NOTHING of him.  You’ve never been to his house, enjoyed his company, experienced his difficulties, taken the time to know him and his people.

Come to my house.  Come and see that there’s nothing to be feared.  We are not deterred by this one rather large fly in the ointment.  Our kid, you see, is alive and well and has never had the measles.  He hasn’t been covered from head to toe in an itchy rash while experiencing a fever.  He also hasn’t experienced any complications from it, and he hasn’t died.  Someone just died, you know, from the measles…it was an adult woman whose infection seems to have gone undetected.

It could’ve been a kid.  It could’ve been a young child whose parents refused to vaccinate him/her because they fear Autism more than death.

Yes, yes…no toxins.  Ok.  I get it.  But until this can be achieved to the level that you want it, for crying out loud, stop influencing people with fear of Autism.  You don’t want the toxins in there?  Come up with other arguments; go about it in a way that doesn’t make our lives scary and undesirable.  We didn’t sign up for that part of it, Mr. Carrey.  Technically, we simply signed up for having children and loving them, taking care of them for as long as we live, and until they’re ready to be on their own.  That it didn’t turn out that way doesn’t make us bad parents, and it certainly doesn’t mean that you don’t want to be like us…

Find a better way.  One that preferably doesn’t involve us…

School’s out for summer…one year to “school’s out forever.”

The big calendar I prepared to map out the summer months goes a long way to getting J ready for school to be out.  That last week is always a lulu if he doesn’t yet quite grasp that we’re in the last few days of “going on the yellow bus.”  His first encounter with the calendar is always tricky, but once he realizes that summer school looms ahead like a promise, he’s fine.

The D.C. landmarks are something he hasn’t yet figured out, but tonight we’re having a family meeting to lay out our plan for this trip.  I have learned all the necessary sign language (TRIP, HOTEL, VACATION, and so on) to help us along the way, and I think it will all be fine once we sit with the map and make sure J understands we’re not MOVING…we’re just TRAVELING.

This is one of our problems: we seldom take vacations, and we’ve only really traveled for total, utter leisure ONCE.  Every other road trip we’ve undertaken has involved some sort of “event.”  We move; we drive somewhere to see a university and then we move there; we drive somewhere for a job interview, and then we don’t move there.  We’ve only just taken ONE totally leisurely trip in our entire life as a family.  We went to San Francisco in 2002, and J LOVED it!  J’s totally a “let’s walk around this town” sort of person, and when we returned (for a job interview/let’s pretend we’re just having fun) two years later, J was even more pumped about it.  Since then, we’ve had moving trucks and many miles to cover, and the madness that ensues with relocation regardless of how carefully laid-out our plans are.  So…there’s no blaming J for eyeing the calendar with wariness when he sees a picture of our car, and several days of a town that doesn’t look like this one.

There will be several more changes to the PECS board before we leave.  We will be meeting my niece, nephew and his wife for dinner our first night there.  I have not seen my niece since 1989, and I haven’t seen my nephew since, possibly, 1990.  TGG has met them several times before, but Dada and I haven’t seen them for a very long time, and J has never met them.  I am hoping this goes well…

The biggest change to our PECS board, though, is the appearance of J’s nephew.  TGG has mended fences (there WAS some maternal interference and I’m not ashamed to admit that I’d been chomping at the bit to get in there) with his baby’s mother, and we now have a good relationship with our non-traditional extended family.  Upon meeting his nephew (a sign we had to learn,) uncle J (another sign we had to learn) promptly kissed the top of his head and thus anointed him as a person he doesn’t mind having around.

The baby, of course, found his big, jolly, hat-wearing, Slinky-carrying uncle somewhat fascinating.  I am sure that once he becomes acquainted with J’s TV room, uncle J will promptly become the coolest uncle on the face of the planet.  J, on the other hand, will have to adjust to the fact that there is a smaller, younger person who will command our attention and require our help to get things done.  At the age of one, June Bug is less capable than J at the age of 20…

TGG’s room now features things it didn’t have before: a small travel-crib, baby toys, baby clothes, diapers…  His car has a baby seat.  There are baby bottles, spoons and bowls in the kitchen cupboard.  And there’s humility.  The same guy who last year didn’t understand why being a father matters melted like butter in the hot sun of the desert when he first met his kid.  We have taken like ducks to water to being grandparents.

So as you can see we are starting an entirely new stage in our family life.  We now have relatives. We now get visits from little June Bug and everything seems to have changed.  When we go shopping, we buy things for June Bug.  When we think of future vacations, we think of June Bug.  When we talk about family, we talk about Favorite Girl and June Bug.  Favorite Girl…since she’s not a daughter in-law, she needs a title, and I flatly refuse to refer to her as Baby Mama.  We’ve all agreed on kindness and respect, and we’ve all agreed that June Bug goes first always.  J’s needs and special traits come into play, but I think we all understand that, too.  I mean, there wasn’t really any balking at the “Happy Bitchday” he wrote on June Bug’s birthday card, and it doesn’t surprise me because these are really very kind people.  We made more of a fuss when we noticed than they did.

In other news, the first batch of soaps J made was a success in some ways, and not-quite a success in others.  He needs to add more moisturizer, that’s for sure, and he needs to really spray those bubbles on the surface away, but everyone was impressed with how beautiful and fragrant they are, and how nice the packaging is.  It’s a learning process, and J is learning and tweaking and putting an effort in…  We couldn’t possibly ask for more.

And so ‘summer’ is happening.  The calendar tells us that we have to wait for the official date to call it that, but it’s happening.  It’s here.  J’s on vacation and accepting of this development.  We are ready.  We have suitcases to pack, addresses to plug into the car’s GPS, pictures to take, feet to abuse by walking more than we would under normal circumstances.  Life is good.  Maybe next year we’ll start ‘summer’ -and the rest of J’s non-student life- by taking a bigger, better, longer, more exotic trip, but for the time being this will do…a three hour drive, a nice hotel, and some sightseeing for the people who haven’t seen sights for fun in thirteen years…

Can’t wait!!!