I Can't Believe She Said That!

Since I don't have any great words of wisdom to add to the conversation, I wasn't going to write about the horrendous letter from Autism Speaks last week.  But, as tends to happen, when I saw my boys this weekend, I had to talk about it.  I knew my Aspergian would find it despicable, as he should, and he did. What caught me up short, what made me catch my breath, what makes me want to confront Ms. Wright, physically, is what I could not have predicted: somewhat tentatively, my boy asked me whether we actually felt the way that this horror of a woman claimed that autism families felt, because of their autistic family members - did we feel like we were existing rather than living, and was our family suffering all because of him?

It never occurred to me that he could ever, ever think that.  We are not an unhappy family.  We laugh a lot.  We have fun.  He is not a "difficult" child (at least not now). He has always seemed so confident that he is loved and accepted at home, even if there were times when he struggled with some relationships outside the house.  If he could question his place, his value in the family, when his situation is so good, and he heard about this because I was ranting about it, what of all those others, who may have had more turbulent relationships at home?  whose introduction to these concepts are that they are valid?  What are those individuals going to think of themselves, of their self worth?

I am not one of the people for whom the "open letter" is a turning point.  I have never liked Autism Speaks, and as they grew and became more powerful and monolithic, I grew to dislike them more and more.  Now, however, dislike has become loathing.  It's become personal. They hurt my boy; they hurt his view of himself.  It's so past time for them to pack up their bags and just ... leave "town."  Being good at media and marketing does not mean they are good at anything that has anything to do with autism.  If they really are concerned about autism, it's time for the Wrights to turn the organization over to people who do know something about autism, and who respect autistic individuals, not people who are invested in demeaning them and using them as objects of fear and pity.

I Guess We Do "Self-Isolate"

People often "notice" that parents of children with special needs seem to "find" each other.  We "self-isolate."  We don't seem to socialize with the "regular" parents the way the "regular" parents do with each other.  Yeah, we're a weird bunch.  Ugh.

Some people even wonder how it is that we manage to find each other.  It's actually amazingly easy.  We, unfortunately, have way, way too much experience with everyone else, to have any trouble at all, recognizing members of our own tribe.  When we speak of our kids, and we mention something "different," something happens with outsiders.  They often don't know they're doing it, I guess, or they don't know what it looks like, what it feels like, to us.  Sometimes, we are even stupid/open/naive (choose your adjective) enough to let drop the actual diagnosis our child carries.  To us, it is often no big deal - a fact, like the color of his hair, or the fact that she loves to sing.  But the horror on your face, or the way your body turns away, even ever-so-subtly, or the fact that you suddenly have someone you need to talk to or something you need to do, or that you gasp, ever-so-slightly.  You, Are Not. My. People.

When I find one of my own, the response is warm.  Often, it is something like, "oh yeah, mine is ..."  Or, a laugh, a smile, a "don't you love how ..."  It can be a question about schools, teachers, doctors.  A reference to who in someone's life is either similarly affected, or affected with something totally different ... yet still, something.  Even a "s/he's so [fill in the blank: sweet, smart, cute, endearing].  Members of MY tribe are not horrified by their children - we love them, just as, presumably, you love yours.  We don't expect others to have different responses to our children.  Unfortunately, we are used to it.  Well, not exactly used to it.  But it has happened, way too often.  We can't deal with it, though.  So, we self-isolate.  We find our own peer group; we find our tribe.  We find ... each other.  And it's way easier than you would think.  And you would be appalled, if you saw it through our eyes. At least, we would hope so.

He Did It!

It's that time of year: graduations.  But this time, it's ours - our boy ... young man, actually ... has graduated from high school.  In some ways, it seems like it went by so quickly, and in other ways, it has been so, so long.  The past month has been endless, and the work was supposed to have been finished at least five weeks ago.  Maybe that's why it has been sooo endless.

Of course, the unfinished work was in English.  Math has never been a problem for my boy.  Engineering has been his place to shine this year, confirming for him, and for us, the correctness of his decision to enter an engineering program in the fall. But English?  Oh dear.

His teacher has been unbelievable - working with him at every turn; modifying assignments; meeting with him; clarifying things if they weren't clear; re-modifying.  This last assignment wasn't even an essay, so I (foolishly, apparently) thought it wouldn't be a big deal.  Two weeks later, I was ready to pull all my hair out of my head.  My boy doesn't let anything disturb his "ultimate mellow."  And he'll sit endlessly in front of the computer and do ... nothing.  Sigh.

Finally, he got the initial piece done.  But he hadn't gotten some information that he wanted to use.  We had persuaded him that getting this in, while waiting for the information, was essential.  And that when/if he got the information, he could add the additional piece, and it should be just a little addendum.

Hah!

The new information came.  He sat in front of the computer for over a week, and did ... nothing.  I reminded him that the final grades had to be submitted.  He acknowledged the truth of what I said, and did ... nothing.  Finally, finally, finally, after about ten days, he made the changes.  Once he started actually working, it probably wasn't more than a couple of hours worth of work (I'm guessing here, because I don't know how involved PowerPoint is, at the level he uses it).

The payoff: the teacher LOVED it!  My boy is actually very skilled at this kind of technology.  He uses it in ways that the average high school student, even in this age of "all the kids do this stuff," does not.  I'm very happy, and very proud.

And my boy graduated from high school, surrounded by hundreds of his "peers," most of whom he has never met, and he doesn't know, and who don't know him.  He sat appropriately (for the most part) and listened to endless speeches, talking about how they all came into the school four years ago (when this was his first and only year at the school), and shared all these experiences (about which he had no knowledge), yet he was part of them.  He loved throwing his cap at the end, and remembered to save his tassel first.  He glowed.  

And his transcript will show that he graduated from our local high school, with a respectable GPA, passing all his courses (this was not always a given), and having taken rigorous college preparatory senior year classes.  He is justifiably proud of himself.  And next year, he is preparing to enter his next phase: studying engineering at a four year university!  Wow!

Everything is Fine, So Why Can't I Breathe?

Everything is fine.  It is.  I should be able to breathe.  There shouldn't be a knot in my throat, or my stomach.  I shouldn't be bursting into tears with little or no warning.  Nothing happened. 

But yesterday, I didn't know.  Yesterday, for a long, endless hour, I just didn't know.

My son texted me, asking me to pick him up from school.  His exam was over, and it was too late for him to get the bus to his afternoon program.  Okay, I could do that, and I texted him back, that I was on my way.  I heard a text come in while I was driving, but I don't check texts while I'm driving.  I pulled into the school parking lot, and entered the school office, as I checked my phone.  "Hello?" was his message.  I guessed he thought I was taking too long.  Oh well, it takes as long as it takes.

He wasn't there waiting.  That was strange.  "I'm here," I texted.  I sat down to wait.  No answer.  No boy.  I waited.  I started to get fidgety.  I tried to call.  My call went straight to voicemail.  This wasn't good, and I was starting to get nervous.  It has been years since the boy has taken off, but that sort of thing doesn't disappear from a mother's memory - it's almost a physical memory, and physical memories are, apparently, among the most intense memories we have.  I'm trying to stay calm.  He is, after all, not really a child anymore.  I ask the receptionist something about whether they've seen him.  She offers to make an "all school" announcement. "Sure," I say, trying not to sound too desperate.  She makes the announcement.  I wait.  No boy.  I try calling again.  Voicemail.  She tries calling the last teacher he was with: nothing.  She tries the announcement again; still nothing.  I text again.  Nothing. She tries his guidance counselor; she's not in.

Finally, feeling myself starting to panic, while no one at school seems to think there's anything that they are supposed to do anything about, I decide I should leave.  Maybe he left school, unnoticed (he does have a history, after all), and headed home.  I tell the receptionist I'm going to go home in case that's where he went.  I ask that if he shows up, she have him call me.  She says she will (I'm not so sure).  I wonder, silently, why school doesn't seem concerned about a student going missing.

I drive home, eyes mostly on the sides of the road, trying to see my boy, who isn't there.  He's not home, either.  And there's still no message.  I try calling him again and again.  By now, he should have gotten home, even walking the three miles.  My mind goes to very dark places.  He's been very stressed.  There have been a lot of assignments that he's had trouble dealing with.  It's exam week.  Maybe he tried walking to his afternoon program, 15 miles away?  That would be too foolish, wouldn't it? Not only is it too far, but the route involves a highway, which prohibits pedestrians.  By this point, I was feeling nauseous.

I kept calling, Occasionally, I got a few rings before the phone went to voicemail.  I found this oddly reassuring - at least he hadn't turned off his phone; he'd merely been in a dead zone.  

Finally, I got a text!  "I just got your texts. I'll be right down."  Aaarrrggghhh!  I was SO relieved! And had so many questions. And was just a bit (!) p'ed off.  I texted back that I was coming back to get him, and would be there soon.

I hugged him many times yesterday.  I made it clear (again) that if he doesn't hear back when he texts something important, he needs to do some follow up (call, check his phone reception, etc.).  I also explained how much he scared me!  He had trouble understanding at first, when I was telling him how this tapped into the stuff from when he was younger, and when his sister was younger, and how it triggered a lot of "stuff."  Then he said, "like PTSD?"

Like PTSD.

So, I guess I'm flashing back, and it totally sucks. And I know he's fine.  And she's fine.  And I guess I will be fine, but right now, I'm not feeling quite so fine ... there's this old stress, combining with this new stress that triggered some "stuff," and sometimes, we "special needs moms," just get caught by surprise, and it's HARD.

Sensory Day

Today was one of those intensely sensory days.  We went to an open house at a college to which my son was accepted.  It started out with something they called a "campus fair."  It was incredibly loud.  On top of the relentless sound of the voices bouncing off the ceilings and walls of the gym, where the event was held, there was the blaring music, which was set at a volume designed to drown out the sound of six hundred people talking simultaneously.  

My son, the Aspie, found it somewhat annoying, but I was clearly much more disturbed by the auditory assault.  I wished, so much, that I had ear plugs.  The sound was making me feel physically ill.  I wondered how often my son, as a younger person, had felt just this way when he said, simply, "it's too loud."  

Happily, the rest of the open house was much more moderated, and while there was a great deal of information, a tour, talking, and everything else one would expect at such an event, no further auditory assaults occurred.  The morning's event receded to the back of my mind; the day's events wound down.  We proceeded on our long drive home.

After getting home, catching our breath, and feeding the dogs, we went out for dinner.  There was a long wait, but we were finally seated - at a small table, intended for two, but an extra seat was stashed at the end, in the bar area of the restaurant.  To say it was noisy, would be an understatement of massive proportions.  

Again, I found myself in a space with incredibly, painfully loud music, many loud voices, and acoustics that seemed designed to accentuate the noise.  My headache grew by the minute.  I couldn't hear my husband, my son, or even the waiter, because of all the noise.  I felt very close to a meltdown.  Again, my son didn't like it, but was not nearly as distressed as I was.  I could feel how easy it would be, if someone were to demand anything of me, to respond in an angry or hostile way. The relationship between sensory overload and "acting out" behavior was so clear to me.  On top of that, I was hungry, which made things so much worse.  

I can't imagine what it must be like, for children, in school cafeterias, for instance, where it is loud and chaotic.  The children are hungry.  They are overloaded with sensory input, often to the point where it is painful. People, sometimes teachers, sometimes aides who barely know the children, are telling them what to do and where to go; the demands may be appropriate, and they may be unreasonable.  And these children know they have to come back to these situations the next day, and the day after; day after day, week after week.  No wonder so many children start engaging in what is then labeled "school refusal."  If I had to face what I did yesterday, every day, I would refuse, too.  And it would not be defiance, or oppositional behavior; it would be self-survival.  

OT - On Parenting and Zealous Representation

This is totally off topic, and it would take pages to trace how I got here, so I'll skip that part and just dive in:  I'm thinking about the attorney who represented my daughter's mother (yeah, I know, your head is starting to hurt already) way back when my daughter was my foster daughter. Sometimes, I feel so much anger towards this woman, whom I have never met, it scares me.

I know that lawyers have an obligation to zealously represent their clients.  I also know that zealous representation does not mean without limitation or regard for others - like the client's own child.  A client in a dependency case should, must, be concerned about the well-being of the child.  But this lawyer had a deep, unshakable certainty that all children - ALL  children - belong with their biological parents, no matter what!!!  And that is the result for which she fought - without regard for anything else.  She did not care what was good for the child, what was good for her client, what was good for any other children in the family - she wanted every, single child that she could litigate over, to be back with her client, the mother.

So, my daughter, essentially a pawn in this woman's game, was relegated to staying with the mother when others of the children were removed, because of abuse and severe neglect (fun fact: more children die from neglect than from abuse).  She stayed for two and half more years, after the others were removed.  During that time, she experienced, of course, abuse and severe neglect.  She was also pimped out by her father, and raped by more than one man.  She was seen by neighbors fellating neighborhood boys.  She was four years old.  Yes, Ms. Attorney, you did her a huge favor, allowing her to stay with her mother.

"But that's not all," as the promos on TV always tell us.  You made sure her mother had control over everything she possibly could.  You made sure that her mother prohibited her from cutting her hair.  She wanted to cut her hair short, when she was seven or eight years old. Why shouldn't a child that age have some say over how she wears her hair?  Because her mother didn't want to allow it, and you made sure she had that kind of control over a child who didn't know where she would be living, or who she would call "Mom," from one month to the next.  Good job.

But that, and the refusal to allow her access to her favorite toys from her mother's house - those were the small stuff.  The big stuff was the stuff the smacked us in the face much, much later;  after we'd adopted her.

It turned out that those "supervised" visits that took place so close to bio Mom's house, so it would be "convenient," even though she had door-to-door transportation provided when they were held elsewhere, weren't so well supervised, after all.  At one of them, when my daughter was about eight or nine years old, and it was pretty clear that eventually, after you did all the foot -dragging and court appeals you could do, my daughter would be freed up for adoption, and we would be adopting her, your client - the woman who you insisted should be allowed to raise my daughter because my daughter belonged with her - elicited from that little girl a promise: a promise that when she was eighteen years old, and she was able to make her own decision about where to live, she would come back to live with her mother.  

My daughter is a person of integrity.  As she grew older, and age eighteen no longer seemed quite so far away, the prospect of the time coming when she would have to fulfill the promise became intolerable. She became severely depressed, suicidal.  She could not go back to live in the house with a man who had sexually assaulted her, and the woman (her mother) who had not only witnessed it, but had denied knowing of its occurrence.  My daughter believed she could not renege on her promise.  She saw her only way out as suicide.  

Ms. Attorney - I believe you set up this situation.  I believe that you, in your relentless, soul crushing insistence that only a birth mother is the proper person to raise a child, set up the ongoing living arrangement, when my child was a pre-schooler, for her to be repeatedly sexually assaulted, and then, when she was a somewhat older child, to be placed in a position where she was not protected from the woman who was supposed to be the person who was supposed to be her primary protector.

The good news is, my daughter is great!  She's grown up, with the help of countless people (mental health professionals, educators, amazing people who went way beyond what would be "expected"), she has survived some very difficult times.  She now has her own family, and is happy.  Her early life still affects her - it is not possible to "get over" the kinds of early life trauma that she endured.  It is possible to learn to live with it, and to thrive - but it takes a lot of support, and a lot of work.

This is Child Abuse Awareness Month.

It's That College Time of Year

We really need to get better at this.  "We" being my husband and me;  "this" being responding to acceptances to college.  It should be easy, right?  "Wow, you got in!  That's great!  Congratulations!"  It seems so easy.  But in our house, like everything else, it doesn't seem to go the way one would expect.

First, you'd think that since our boy who is applying is our third child, we'd have had some significant practice.  

Nope.

Child #1 only sort-of applied, and to only one school, very late, and it was a school that pretty much accepted anyone who was graduating from high school.  So, there wasn't much practice there.

Child #2 applied for real, and we were very happy with his acceptance, but he applied to only one school, and when he got his acceptance, decided he wasn't going to bother with any more applications.

So on to Child #3.  One day, he got an envelope from a school we knew he was planning to apply to.  "Did you tell them you wanted more information?"  "Not exactly."  He opens the envelope, waves a folder that says "Congratulations," and says, "I guess I got in."  "Wait, wait, did you apply there?"  "Yes."  "When?"  "About two weeks ago."  "Um, you never mentioned it.  Well, congratulations!!!"

Sigh.  OK.  Not exactly how the first acceptance is supposed to go, but it's going to get better, right?  Wrong.

"I just got an email congratulating me on being accepted to X University."  

"Was it an acceptance email, or was it an email that assumed you'd already gotten a letter?"

"It assumed I'd gotten a letter."

"Well, congratulations, assuming you've been accepted!"

"Thanks.  I guess."

He looks almost as confused as I feel.


"Um, didn't you just apply there two days ago?"  I know, that's not  appropriate, but how can someone get accepted in two days? I mean, really!

Well, no, he says, it's been a bit longer than that.  Maybe a week.  

I realize I'm old, but a week?

He has a few more applications out.  I'm hoping that he gets some acceptances the old-fashioned way - the thick envelope in the mail, when we already know he applied.  

But of course, this is the good stuff, and I am totally not complaining!  Maybe he'll get the thick envelope in the mail today!