Catching Up - 6 years later

I stumbled on my posts from 2013 -- the last time I wrote about my son -- and couldn't believe that much time had gone by.  What happened?  Well, life, I guess.

Zac is now 30 years old.  30.  And a lot has happened since 2013.  He's had several jobs - the last was commuting by bus about 35-45 minutes for a data entry position.  It was a great set-up, designed to employ people with disabilities.  Then the company was sold and the new owners relocated, taking the jobs with them.

 So, in trying to find a job field where he could find more stable employment, for the past year he's been taking a daily class in medical coding and billing.  This class is for young adults on the spectrum -- hopefully, their attention to detail and good memory skills will make them prime candidates for this kind of employment.  They have to pass several accreditation exams, so I'm crossing my fingers and hoping.

But perhaps the biggest life change that's happened is that Zac has moved into his own apartment!  Something I wasn't sure would ever happen, has happened.    I've looked at a lot of potential places -- apartments, houses, group homes -- and this exceeded my expectations.  We jumped at it, although Zac was not at all excited about the prospect of leaving home.  We started out with a bribe -- a new tv with cable, on us.  Then it was "you stay there Monday through Thursday, and you can come home on the weekends" (we're roughly 15-20 minutes away).  And by golly, things have worked out!  Now I pick him up for class on Fridays, he comes home to do laundry, have a meal, and then he's back to his apartment.

There's a wonderful woman, Maggie, who is in charge of residential living who pops in once or twice a week, plus a nurse to monitor bp, weight, etc., and several agency people who drive him to the store or wherever he needs to go.  And he has learned how to navigate public transportation, which has opened a lot of doors for him.  And though I never forget my mantra of "never let your guard down", we are cautiously optimistic about our son's prospects.

So while it may (and probably will) take years, things can take a turn for the better.  For now.  Who knows what's around the corner.  All you can do is take one day at a time.

Mother's Day

Have you ever been asked to recall a time in your life that was really, truly wonderful?  Sometimes it's hard -- if you're lucky you've had a number of great moments.  But I can really and truly recall a period of 4 weeks about 24 years ago when all was right in my world.  

I was a new mother.  My son was just about 3 months old, and I was finally beginning to feel like I had this parent thing figured out.  I was visiting my parents in Illinois (my mom had come out at the birth, but this would be the first time my dad would see Zachary),  and this was my first plane trip with a baby.  Side note:  The plane trip alone was a big accomplishment for me -- I had been dealing with claustrophobia and panic attacks in closed spaces.   But after the birth, I figured I could handle anything!  My discomfort had disappeared.

My husband and I were staying for a week.  And it was the best.  First of all, it was May, and it was a wonderful time of year.  Everything was greening up, the fields were getting green, the skies were so blue and went on forever.  I found I had really missed my hometown since moving to New York.  It was peaceful and calm and open.  My mom and I would go to lunch with Zac in his carrier, and he was such a good baby!  At 3 months they're still I to sleeping a lot, so it was great!

At the end of the week I couldn't bear to leave!  Hubby had to go back to work, but we decided that I would stay on for a while, which turned out to be another 3 weeks.  They were the most wonderful 3 weeks ever!   My parents loved their new grandson (I think they had practically given up hope of grandchildren in their future).    My mom worked her culinary magic and made all my favorite dishes.  I got to show off my baby  boy to all my friends and the neighbors and practically the whole town.  Shades of Norman Rockwell, there was even a band concert on the town square every Friday night, complete with a beautiful fountain, illuminated with changing lights.  I would take endless walks down tree-shaded streets, feeling so at home and at peace.  It was perfect.

In Zachary's first year I took him to Illinois about every 3 months, staying a month each time.  It was always great fun, and I always hated leaving, but that first time still stays with me as the best time in my life.  The stars were aligned that first time.  Spring was at it's best that time.  I spent my first Mother's Day there.  Those days will always bring a smile to my face, and a deep feeling of peace, love, well-being and happiness.

Happy Mothers Day.

Another Year Gone

My baby celebrated another birthday this week -- his 24th.  And even though he's 6 feet tall and weighs 250 pounds, he'll always and forever be my little boy!

I find that birthdays seem more like the time to stop and take stock than New Year's.  And even though my son continues to sail through his life with no real reflection ( that I can see, anyway),  here I am once again, worrying about his future and what is in store for him.  Always with the feeling that I haven't done enough, am not NOW doing enough, to secure a happy, productive and loving place for my boy in this world.  

I know I'm not alone  in this constant state of self-doubt.  Reading the Facebook pages and blogs of other parents in the same position as I am shows me this is true.  All parents have this concern, I think, but parents of kids with disabilities have it in spades.  Does it ever end?  So far, no end  in sight.

I don't want to get into details.  We all have our own personal "to do" lists we carry around with us.  We have recently taken a tentative step towards getting him steady employment, so that's a good feeling.  Hope it pans out.  Getting him settled in a place of his own, with some degree of support, is my own personal #1 thing to do.  It haunts me every day.  Where will he live?  Who will be there for him when I no longer can be?

Yeah, I'm a chipper person to be around on birthdays.  Truthfully, I do enjoy them, and I always look with pride at my kids and what they've accomplished over a year's time.  And with my daughter my thoughts aren't quite so desperate.  She will figure things out.  But Zac?  I just don't know.

So here's to another year gone by.  And here's to the year ahead.  May we all find our way just a little bit further down that road of life, and all that it brings.

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.