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.

A pattern emerges…it’s not a good one

All through the day, from the time Dada and TGG leave for work until they come home, J is happy and calm.  After going to the gym, while having dinner, J is calm.  And then, randomly and unexpectedly, we get “the meltdown.”

This doesn’t happen while he and I are alone.  I can tell him NO, ask him to help me when he’s engaged in something else, take him out of his routine, and he’s fine.  The only thing I’ve been able to pinpoint so far is that J has tantrums when Dada and/or TGG are home.

I know J loves Dada and TGG.  I know he likes to have them around.  I know he enjoys their company.  I don’t know why he would get upset when they’re here.  I’m trying to figure this out.

My guesses so far:

1)  Dada and/or TGG take my attention away from J;

2)  Dada and TGG don’t spend enough time with J;

3)  Dada and TGG are more easily spooked by the tantrums than I am;

4)  Dada and TGG pay more attention to J when he throws a tantrum;

5)  I pay more attention to J when he throws a tantrum while Dada and TGG are home (because he doesn’t throw them when they are not.)

Last night the tantrum came between putting on one sock and putting on the other.  J immediately went to SIB when he wanted his bandaids for his hand.  No warning sound; no hesitation.  SIB and that was that.

I made him go to the TV room, and he was going to hit himself again but I held his hand and jammed the iPad in front of him.  “We don’t HIT.  We SAY!”

The process is convoluted and frustrating because I’m trying to reason with a person who is just NOT into it…  So part of the effort goes into “talking him down” long enough to get him to understand that we’re trying to understand why he’s upset.  Anyone who has tried to “talk down” an individual in the Autism Spectrum knows this is often easier said than done.

Talk him down I did, but it wasn’t easy, and I had to make sure he understood that I was not happy about his behavior.  Once he got what he wanted, J turned into Mr. Charm…and I was not buying it.  I don’t buy Mr. Charm on a regular basis, and I flatly refuse to do it when it comes in the heels of being obstreperous.  After his outburst, and once he had re-engaged with his bedtime routine, J started the I LOVE YOU on maximum speed.  I sat down on his bed and explained that I love him, but that I was angry because he is skipping all the tools we give him for communicating and going straight to SIB.  I also explained that if he keeps using PAIN in his HAND as an excuse for melting down, he’s going to the doctor for an X-ray.  Even though J then backpedals on the melodrama over his hand, he IS going to the doctor.  I am fairly sure that he IS hurt, and he needs something more than his go-to remedies of sixty bandaids and a piece cut off from a pair of tights worn as a sleeve over his hand.  The medical implications of this situation do not escape me, and I don’t take them lightly.

While I figure that part out, however, I’ve been proactively pursuing ways to help J communicate when he feels “stuck.”  This morning we sat down with the printer, the laminator, and our go-to ASL website (http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi) to figure out the signs that can help him tell us what he needs.  I also printed four DON’T HIT signs to help him remember this particular point, and I printed a two-sided HELP! card with the word on one side and the signs on the other.  A reminder to use his Proloquo2Go hangs prominently in his TV room.

Of course, the e-mail in which my husband asks the doctor to give us a little more feedback so we can make an informed decision on J’s med dosage has been sent.  This e-mail is so beautifully composed, so eloquent and to-the-point that, when asked for my opinion on its contents, I replied to Dada that it makes me want to make long, sweet, slow love to him.  “So it’s ok, then?”  Yes, it was more than OK; it’s the e-mail that I can’t write right now because my mind is flooded with all the other things I need to address before I fully address this issue…

We’ll see how this goes.  So far this morning I’ve done everything humanly possible with a printer, velcro, laminating sheets, and chutzpah.  I’ve spoken to J; I’ve involved him in the process of making things clearer for him to make things clear for us…  I’ve anticipated everything that my addled brain can possibly anticipate.  I’ve agonized over having to give him more med, and I’ve researched as much as is available (and comprehensible to a non-scientist like me) on the internet. I’ve texted back and forth with J’s teacher, and I’ve asked for input from J, TGG, Dada, and the teacher.

For the time being, I’m tapped out.  I will see what the rest of today brings, and I will try to address what TGG and Dada can do to approach the situation better when they are home.  It’s all I have right now…

It’s time for chores (oh, so late in the morning that it’s almost afternoon,) and for engaging J in something that has nothing to (outwardly and obviously) do with behavior modification.

I’ll keep you posted.  Suggestions are welcome.