Brother and Sister

I have two children -- my firstborn, Zachary, who has autism; and my daughter, who is neurotypical.  There is an 8 year gap between the two.  We waited because: 1) we were kinda busy doing the "autism is my life" thing, and 2) I was scared to death that my chances of having another child with autism were better than your average parent.  It took about 2 years to sort out our feelings about the possibility of having two kids on the spectrum, and whether we could handle it,  and in the end, we decided to go for it.

I remember being unbelievably relieved when I found out I was carrying a girl, since autism occurs much more frequently in boys.  Whew!  A good sign (I became a great believer in "signs") I told myself.  Plus, I confess, I was secretly rooting for a girl.   The whole mother-daughter scenario went through my mind.  And, I admit, I desperately wanted the experience of having a child who would allow me a glimpse into the world of "normal", from which I was currently excluded.

And finally, there she was -- already too impatient to wait the full nine months, coming a month early.  So tiny!  And healthy.  We were so happy.  Life seemed to have settled down a bit for us.  Zac was in a very good program that we loved, with teachers who understood him and cared about him and worked well with us.  It allowed me to take a few deep breaths and enjoy those initial months of babyhood, where you and your newborn are getting to know each other.

Ah, but could I leave we'll enough alone?  Hell no!  It started around 3 or 4 months of age.  I began looking for the tell-tale signs that something was wrong.  Did she look at me?  Was she babbling?  Was she babbling enough?  As she grew older, was she pointing?  Did she seem engaged in her
surroundings?  Any peculiar mannerisms developing?  Was this one autistic?  Or not.  All signs pointed to "go", and we began to relax.

On her second birthday, a "well-meaning" relative in the education business remarked that she wasn't hearing some sounds that you usually hear at this age.  That was it.  Over the course of the weekend I became convinced that daughter-dearest was a member of the "A-Team".  Every tantrum was suspect.   Yep, her language was definitely delayed.  Oh no, she wasn't engaging in "appropriate" play.  Did she just look at her wubby  too closely??  Talk about a meltdown.  Only it was ME melting down, not the kid.

So we embarked on the rounds of evaluation.  Behavior, speech, hearing, etc., etc.  We spent a year with a wonderful speech therapist who told us after that time that she was fine.  And she was right.
While she didn't say much at 2, now at 15 she won't shut up.

So I like to think that I have the best of both worlds.  I have a son who is the strong, silent type, and a daughter who is a chatterbox.  Zac and I can enjoy some peace and quiet over dinner, while Chloe and I dish over pizza.  She helps to bring him out of himself a little, and he helps to tone down her craziness.

So what is the point of all this rambling?  I guess to say that I wish I hadn't spent so much time worrying and wondering.  I lost a lot of precious time that way, and I can't get it back.  I wish I had just kicked back and enjoyed what I had, instead of mucking things up with my paranoid delusions.  Things were bound to work out one way or another.  They always do, it seems.

Can This Bird Fly?

I think the Number One thing that has kept me up many a night is worrying about where Zachary will live when we are no longer around. I believe this started when he turned 18 and we started to line up SSI, Medicaid, and entered the world of support services post high school.  It wasn't urgent at the time, but as he hit twenty, and now we're looking at 24, it's really starting to press in on me.

At the beginning of this process I told myself that I wanted to see him settled in some situation by the time he was 25.  I wanted to know that he was in a place that was suited for him, with people who were caring and respectful and would provide a warm environment in which he would be happy and comfortable and able to function at his highest capacity.  I mean, isn't that the ideal?  Isn't that what we all want for our kids?  I want -- I need -- this peace of mind.  

Because, unlike neurotypical people, some of our guys are not able to go out in the world and achieve this on their own.  My guy wouldn't know where to start.  So my husband and I are by default the ones responsible for finding a place for our "hatchling" to land.  God willing, let it be filled with downy feathers and fluff!

Ah, but the actual nuts and bolts process has sharp sticks and stones, twists and turns, and confusing signs that have so far confounded us at every turn.  First of all, housing is in short supply.  I can not quote you the dispiriting statistics, but there are far too many disabled individuals looking for a home than there are suitable homes.  Second, the powers-that-be try to group individuals with similar ages and abilities together.  I don't want Zac to be placed in a home with 50 to 60-year-old men with schizophrenia.  I want him with guys approximately his age.  Unfortunately, this is far easier said than done.  Third, people on the waiting list (we're on the NYCares list and a county list) are given a rank -- 3 (housing not an issue at this time), 2 (actively seeking housing, but not an emergency), and 1 (have no place to go and desperately needs a home).  When an opening comes up in a house, the state agency goes through all the applicants waiting for a spot and determines who is the most suitable and the most in need.   In the 5 years we've been actively looking, we've had one suitable opening, which went to a #1 (which is rightly so - no one should be turned out on the street).  

We started out at age 18 at number 3, moved to number 2 several years ago, and here we will stay until my husband and I are too old and infirm to take care of Zac, OR we die in a firey plane crash, whichever comes first.  And that's what keeps me up nights:  WHAT IF?  I want to be able to BE here to help Zac choose his second home.  I want to KNOW that he's settled in with people who will love him and care for him, and UNDERSTAND him.  Who will treat him with respect.  I want to SEE him settled in, and KNOW (as much as these things can be known) that he'll be OK.  

Is that too much to ask?  I don't think so.  And so we will continue to hope and wait.  Wait and hope.  Perhaps we'll get lucky.  Maybe something will open up that is just right for our son.  Maybe the system will change for the better.  I would just like to rely on more than hopes and wishes.

Recharging the Autism Batteries

I had lunch yesterday with my autism moms -- 5 of us who met when our kids were in a therapeutic nursery and we were all in a state of "diagnosis shock".  We have been together and helped each other  through good times and bad, thick and thin, highs and lows -- you name it.  When I need to talk to somebody who really "gets it" I pick up the phone and punch in their numbers.

Our kids are all in various states of post-education programs.  Two attend a day habilitative program which they love;  another has a variety of programs cobbled together by her fabulously inventive mother; and my guy, who's doing a piecemeal program of community college classes, work, and an employment training program (which we're in the process of trying to upgrade).  For right now, we're all in a state of semi-satisfaction.

But we all want more.  We want to them to be more independent.  We want them to have more opportunities for learning and growth.  We want them to have as much of a normal life as they can.  When we were in the nursery with our little ones, the one burning question we all had was "Where are all the grown up autistic kids?"  We saw all the little ones, were reading the articles about the benefits of early intervention (and they are invaluable),  were looking into school programs designed for our kids.  We were doing what we thought (and hoped) where the right things.  But --- we wanted to see the future.  What was in the cards for our babies when they reached adulthood?

So, 20 years later, here we are.  Sitting across the table from each other, talking about what's going on in each other's lives.  As always, we've had good days and bad.  Our kids (they'll always be our kids) are in their   various stages of adulthood.  They're taking their first tentative steps into the world, such as it is,  and we're still looking for ways to gently slip them into the mainstream of life.  We've had failures, and we've had successes.  We're still looking for that magical day when we can sit back and heave a sigh of relief.

Will it ever come?

Looking Back, Peering Ahead

My son has come a long, long way from where he started.  At 3 he would have sudden and uncontrollable tantrums -- just out of nowhere - wham!  Screaming, throwing himself on the floor, flinging everything in sight every which way.  For no apparent reason, at least to me.  I was always on edge, waiting, anticipating the next outburst.

We attended a special nursery for kids with autism, and things got a little better.  I learned to anticipate some of the conditions that might set him off, and how to manage his outbursts better.  I would have to remove him from the scene, hold him securely, and tell him his tantrum was "all finished".  Those became the magic words.  "All finished".   Soon he would be sobbing in the midst of his meltdown, "All finished!  All finished!"

As he got older, we were fortunate (for the most part) to have access to really good programs and teachers (god bless them!) in our district and out of district as well.  He (and we) learned more ways to cope with the sudden explosions that seemed to mark Zac's days.  "Use your words" became our new motto.  Sometimes he did.  Sometimes he didn't.

At this point, I adopted a saying that an autism dad in the nursery used: "Never let your guard down".    It has proved invaluable.  Because, just when you think you've got things under control.  Just when you tell yourself he hasn't had a meltdown in weeks, and finally he's getting the Big Picture.  Just when you're reaching around to pat yourself on the back, it happens.  A call from school.  A big scene in public.  Banging and slamming at home.  Whatever.  It's like old times.

At any rate, you soldier on.  You try new things.  Some work, others don't.  I honestly think that just the act of maturing helped in Zac's self control quite a bit.  But I also see that even after all these years, there are those times when things don't go his way, or he has a big disappointment, his first reaction is to lose it.  Thank the Lord it's not a falling on the floor, kicking and screaming fit.  At 6 feet, 200 pounds that would not be pretty.  Nowadays outbursts manifest themselves as huffing and puffing, maybe stamping his foot, a shout of disappointment or a quick storming around. Sometimes he will wail "Oh noooo!"   Sharp words will usually bring him around.

And this I now see.  In my frustration at his lack of self-control, I can see that it's not a conscience thing for him.  He doesn't do this by choice.  His initial reaction of anger is not one he chooses.   This is just what happens to him.  After years and years and years of classes and doctors and medications and social skills classes and whatever other therapies you can name, he can't help it.  Even though he knows -- he knows this kind of reaction is inappropriate -- it just happens - Bam!

There has been progress.  He has grown more tolerant of conditions that tax his patience.  Waiting is still not one of his favorite things (but then, who does like to wait?)  The outbursts usually last only a few seconds and he seems to shake himself out of it, is very apologetic.  He knows this is not the right way to behave.  But that initial zen moment of "doom" is still his go-to emotion.  One that he still struggles to master.

And so, looking back to the earliest years, I can trace a path of progress.  He is more aware of who he is, and his actions and their consequences.  His efforts at self-control are, at times, heroic (at least to an impartial mother).  He (and we) are forever learning and moving forward, and we will never stop.  I am so very proud of him, and all he's accomplished.   I look ahead to see what is next.

To Be (Social), or Not To Be (Social)

I wish my son had friends.  Not even a lot of friends, just one or two would be great.  Like-minded guys (or girls) he could hang out with, go to movies with, play video games with, go for a pizza with.

Who am I kidding?  I know with a fair amount of certainty that that probably is not going to happen.  I don't mean to say it's hopeless, but after 20 years of throwing social interactions at him in the hopes that something would stick,  I don't see it in the cards for Zachary.  He is a solitary person.

But here's the thing:  he likes and enjoys his solitude.  Who am I to interfere?

When he was 4 or 5, we (the mothers in our therapeutic nursery) would always get together with the kids, pushing and prodding, having activities and crafts and outings in the hopes that we would all fall into the wonderfully normal life of normal parents and kids having a good time with friends.  The grown-ups would have a good time, but we were constantly corralling our kids, directing their interactions, instructing them in how to play, to share toys, how to be with each other.  It was fun, but exhausting.

In elementary education, Zac was in a variety of situations.  A transitional kindergarten, a closed classroom, integration into regular classrooms with a "shadow".  He mixed with a variety of kids with different needs, and some who were just regular kids.  There were initial attempts by others to interact with Zac, but he would have none of it.  And predictably, after a while, they left him alone.

We've spent thousands upon thousands of dollars on social skills classes for this child.  And he has picked up some rudimentary social "routines" he knows are expected of him in certain situations.  But he's picked up no friends along the way.  From the age of about 8 he's been on medication basically for anxiety and some obsessive/compulsive traits, which required periodic visits  to a very nice and somewhat understanding psychopharmacologist (shouldn't every child have one?).   On these visits he would ask Zac about what he'd been doing, about school, his activities, if he had developed any friendships.  Always with the friends.

And then on one visit , Zac articulated what I truly believe is his take on things.  After the thousandth time of asking about friends, the doctor wondered aloud why Zac seemed to not want friends.  And my son said simply, "Because I think they would interfere with my lifestyle."

And there it was -- like a revelation to me.  Ah ha!

Zachary was never one of those autism/aspergers kids who desired to have friends, but could never figure out the social intricacies that opened the door to friendships.  He was never at the window, looking out as others played, wanting to join in but not knowing how.  Looking back, I realize I was the only one with the heavy heart as I watched my little boy all by himself.

Today, Zac is still a solitary being.  But today, as when he was younger, he is comfortable in his solitude.  Happy, even.  He has interests and pursuits: computer, sports (he follows them all and goes to games with his dad), cars, movies, tv, books, video games.  He reads the Post and Daily News.  He's been taking computer courses at the local community college towards a computer support certificate and perhaps even an associates degree.  He works per diem at a company that employs people with disabilities as a data entry specialist (their title, not mine), and once a week attends a "job club" at his agency that helps him troubleshoot any problems on the job.  On good days I tell myself it could be worse.  But, of course, it could be better.

I have come to an understanding with my son as to his status as an island in this sea of humanity.  So, okay, you don't have to be Mr. Sociability (as if!).  But you do have to learn to navigate and deal with other people in the course of your day-to-day life.  You may want to be alone, but you cannot live entirely alone.  You have to deal with people in a variety of situations: the store clerk, the waiter, your class instructor, the bank teller, the guy who cuts your hair, your family and relatives. Our dogs.   And on and on.  This concept is a work-in-progress.

And so it goes.  Perhaps one day he'll turn a corner and things will change.  He could find someone on the same wavelength -- a fellow autistic traveler; or a nice bossy girl who will take over looking after him.  Maybe he'll get a cat!  We all change as we grow and get older.  Who's to say he won't?

I will remain eternally optimistic.  For now.

Yes Houston, He Has a Problem

You know, it never ends.  From the time he was diagnosed to today, we're still asked to provide proof that our son has a disability.  I guess part of it is that he doesn't look disabled (unless you happen to catch him grooving to flashing lights or something).  But really.  Still?  It started when we wanted to get him into a therapeutic nursery outside of our district, continued after a disastrous kindergarten year and we wanted to go out of district again, and once more when we wanted a particular program in a high school other than our own.

We have the reports.  We have the medical forms.  The evaluations.  The tests.  We have a file drawer full of paperwork.  It all points to the diagnosis of Autism.  It's official.  He's been inspected and detected.  I am getting tired of having to prove this over and over and over.

This time, we're trying to get waiver services for an employment training program.  The Development Disabilities Service Organization (DDSO) isn't sure he's qualified to receive this service.  We provided the initial reports, reviews, evals, etc., and were sent a letter requesting additional information.  Okay, we know the drill, we gave them more reports, reviews and evals.  Not enough.  They wanted to see him in-person, up-close and personal.  Fine with me.

Took him to the meeting.  A panel of 3 professionals and the social worker.  I admit, I was not prepared for the formality.  I thought it was a chat between him and the social worker.  Oh no.  It was much more.  They spoke with him, then with me.  Now we wait for 2 to 3 weeks to find out if he's approved or not.  If not, then we go to appeal.  He'll be 40 by the time this thing resolves!

I'm so tired of this.  Yes, he was crowned autistic at 3.  And guess what -- he's still autistic at 23!  No  miracles have occurred.   He hasn't grown out of it.  And the long-range forecast predicts continued autism.  I've come to terms with it, why can't the agencies-that-be realize this?

No Screaming

We found a wonderful therapeutic nursery for Zac to attend -- it probably saved my life, actually -- and discovered that Zac could read at an early age.  Signs and lists were invaluable to us, so, for about 3 to 4 years, we had a big sign taped to our refrigerator "NO SCREAMING!".

Guests new to our home would frequently look startled when confronted by the signage, and then proceed to speak in hushed tones.