Never Let Your Guard Down

A wise parent of an autistic child once told me - many, many years ago - "Never let your guard down".  He was speaking of those times when you think you have things under control;  you're on top of it; you've got all the bases covered, etc., etc.  You are actually daring to believe that life is going to work out exactly as planned.  THAT'S when life is going to sneak up behind you with a baseball bat and give you one hell of a headache.

Now, I'm not being entirely pessimistic here, although it sounds like I am.  I initially scoffed at this parent when he expressed his philosophy of life.  However, the intervening years have proven him accurate, at least in my experience.  There have been countless times when I dared to assure myself that I had things under control, only to be proven wrong.

My latest encounter to illustrate the folly of ignoring this maxim was just last week, when my son -- who is 23 and had been receiving Medicaid Waiver services for 5 years was denied continued eligibility.  We had been going along, confident that things were on the right path, and had applied for funding for a job training program to secure more steady employment opportunities.  Lo and behold, the organization that provides Medicaid benefits couldn't find his eligibility approval letter from years ago, so we had to re-apply for eligibility all over again.  And with state budgets tightening, they are not as free with approvals.  So they rejected his application.

There is really no way I can explain how I felt when I opened up the letter and saw that not only was our request for funding for the jobs program denied, but there was a chance that he would lose service coordination, medical benefits, as well as his current job situation.  We had been "cut loose".

Yep, I had let my guard down.  And WHACK -- out of the blue.

But my husband and I regrouped.  We started contacting people: the higher-ups in his agency, a special needs lawyer, people we hoped could give us advice on how to proceed.  Teachers and aides and doctors from his past that could provide testimony that yes, he does indeed have deficits.  We collected all his evaluations and tests and doctors' letters and any scrap of paper that dealt with his disability.  We had our game faces on, ready for the next step, determined to convince whoever we needed to that our son needed these supports.

As it turned out, a last minute phone call and letter from Zac's service coordinator explaining the discrepancies in some of Zac's test scores seemed to turn the tide.  (Being a tad cynical, I also think that my phone conversation with the eligibility committee chairperson wherein I mentioned the involvement of a lawyer also played a small part).  At any rate, I will not be completely at rest until I have that all-important eligibility confirmation letter in my sweaty hand.

So what am I trying to say here?  Do we always have to walk around looking over our shoulder, expecting the worst?  God, no.  That would be an awful way to live one's life.  I guess we can only do the best we can -- for our kids, and for ourselves.  And when you get that unexpected kick in the butt,  dust yourself off and get on with it.  Tomorrow's another day.

Thankful

Tomorrow is Thanksgiving.  An American holiday if ever there was one.  The day we count our blessings and give thanks for all we have.  We all have our family traditions for this day, for better or worse.  If we're lucky, we get to gather together with people we love and care about and share a meal and fellowship, have some laughs, make some memories, eat a little too much, and be thankful that we are where we are.

For the 8th consecutive year now, I will be sitting in the front row of the Thankful Section.  This will be my 8th year post breast cancer, and believe me, I do not take these milestones lightly.  It was perhaps the darkest time of my life, with the darkest thoughts and fears.  And I'm still standing!  You read about people who have survived cancer saying that it really changes your outlook on life, and by God, it does!   Every day is a gift.  I enjoy the simplest things - and I worry less about the stupid stuff that used to get me down.

I appreciate my family more -- even though they can still drive me crazy.  I love spending time with my two dogs -- (we totally understand each other).  I love always having a book in my hand, and regularly get lost for hours in a good one.  My close circle of friends are the fuzzy, warm blanket in my crazy life.  These are the things that I am really, truly, forever thankful for.  Each day I get to spend with these wonderful gifts is truly a blessing.  I hold them close to my heart and smile.

Happy Thanksgiving to one and all.

Friends of a Feather

When your child gets a diagnosis of autism, words just can't describe that kick-in-the-gut feeling that overtakes you.  The denial, disbelief, terror and despair that take over your life.  Nothing is the same.  Your life as you knew it (and hoped that it would be) is forever changed.

And then, finally (and hopefully), you find yourself walking amidst the wreckage of your old life,  picking up the pieces,  looking for whatever good you can to help rebuild your family and its future.  And the life preserver that I found was a wonderful early intervention nursery, and the people who worked there, and the mothers who came there -- like me -- looking for a way to reach our children.

We call ourselves the "Einstein Moms" --  and we and our kids attended the Albert Einstein Therapeutic Nursery,  a part of the Albert Einstein Medical Center in the Bronx.  You did not send your child off by himself to this program,  he AND you were required to attend.  Believe me, I know I was lucky to be able to do this -- working moms (or dads) could not.  And this required attendance in the classroom was what helped me to understand my son's disability, and how to help him (and myself) navigate the world of autism.

Besides the wonderful connection to Albert Einstein (my autism idol),  the program stressed a language-based therapy.  Activities were geared towards communicating through words, sign language, signboards -- anything that made the child an active participant in the communication process.  For three hours each day we sang songs, played games, made art projects, had free play and snack time -- all within a framework of getting our kids involved in the world through words and actions.  We learned how to interact with our kids to keep them focused and engaged.  How to structure things so that meltdowns were less frequent, and when they did occur, we learned effective strategies for dealing with the situation.  We were all students.  We were all learning.

I remember my first day at the nursery.  My son, 3 at the time, did not take kindly to following a schedule.  In the short span of an hour and a half, he had a series of outbursts which led to full-out, out-of-control meltdowns.  Each time, one of the teachers would accompany us to the kitchen, where we worked to calm him, and helped him get himself under control.  It was horrible.  It was awful.  I was shell-shocked and embarrassed and drained.  After the worst was over, we rejoined the class at the table for snack.  I remember so clearly, sitting down on one of those teeny tiny chairs, soaked through with sweat from wrestling with my kid, not wanting to look at anyone else in the group, feeling so sorry for myself and wanting to call it quits.  Then, a hand reached over and patted me reassuringly on the knee.  A mom, a fellow autism traveler, with the kindest face I've ever seen, smiled gently at me.  She knew.  Her smile and kind gesture meant the world to me.  We were all in the same boat here.  And there is great strength in numbers.

And we all became friends.  18 years after graduating from the nursery, there is a core group of 5 of us that are still close.  We're spread out over New York, New Jersey and Connecticut, but we manage to get together for breakfast, or lunch, or dinner at least 5 or 6 times a year.  We email each other all the time, and follow each other and our kids on Facebook.  We have get-togethers at each other's houses, and celebrate birthdays and other important occasions.  We have seen each other at our absolute worst.  We have shared with each other our happiest times.  I honestly don't think I would have gotten through my darkest days without these women by my side.

Thank you, dear ladies, wonderful friends, for your love and support and friendship all these years.


In fond memory of Dr. Doris Allen, Director of the Albert Einstein Therapeutic Nursery, the smartest, bravest, most dedicated and straightforward person ever.   Thank you, Dr. Allen, for all your help.  Your memory lives on in the lives of all those families whom you've touched.  

Can't Complain

November 5th:  A week ago Hurricane Sandy struck the East Coast, and thousands of people's lives were changed forever.  Homes were destroyed, lives were lost, and towns all along the coast were forever altered.  The pictures of devastation were everywhere -- showing tragedy, despair, hopelessness.  But there were also photos of survivors, of hope and determination, of people pitching in and helping each other.  Things will get better.  They must.

And so on this day, I look at my life, my family, my day-to-day concerns, and I acknowledge that I am very fortunate, and have no reason to think otherwise.

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?