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?