Thursday, November 25, 2010

Blessings

This Thanksgiving has been one of the most interesting days of my life.  I am very thankful for my children/family and friends.  The last thing I would ever think would/could/should happen did. Life is indeed strange.  Now to try to work off all the mashed potatoes, yams, sausage stuffing, squash, green bean casserole and THE most amazing sweet potato pie ever.

Happy Thanksgiving from our family to yours!

Wednesday, November 17, 2010

What is the face of autism?







Many thanks to Kristin Chalmers (www.kristinchalmersphoto.com) for these great pictures, taken for her "Broad Spectrum" project.

Sunday, November 14, 2010

Giving thanks

As the holiday where everyone celebrates being thankful approaches, it's a good reminder that giving thanks shouldn't be reserved for one day a year.  My family's Thanksgiving for the past 6 or 7 years has involved spending time with some of our "chosen family", dear friends and their parents and siblings.  With all the unrest and sadness in too many parts of the world, some as close as our own backyards, the fact we can have a plentiful meal to enjoy with people we love is something very special.

Blessings in my life that I am very thankful for include:

-My children who make me laugh, make my heart smile, and who bring so much joy to my life.  Despite the challenges (like autism), these four young people constantly remind me of all that is good.  Unconsciously, they bring joy and fulfilling hugs and love to my soul.

-Friends who constantly practice patience and enormous amounts of kindness.

-Good, and improved,  health & a health care system and insurance which provides quality and affordable care for my family.

-A job where I am entrusted by parents to help obtain appropriate services for their children with disabilities.  It's humbling to know people not only pay me, but they trust me, to join them on their special education journeys.

-Teachers and therapists who don't get paid in funds nearly enough for the amazing work they do with all the children, especially Andrew.  Their "other" paychecks I surmise come from seeing kids thrive thanks to their patient and competent work.

-Peace, love, and chocolate

God and whatever other powers who are out there have been watching over us. Our angels (Lynda, of that I am certain, is one of them) smiled in heaven on my family. I am certain they all played roles in second chances in my life this past year.


What are you thankful for?

Tuesday, November 9, 2010

An exciting weather day


My son has an ear-to-ear grin. His email buddy and special friend, WHDH meteorologist Jeremy Reiner, came to his school today to talk about the weather.  The first time Andrew met Jeremy, during a 2007 visit to Channel 7, was probably the most exciting hour of his life.

I am particularly touched by the fact that a meteorologist on a major Boston station is willing to come to Andrew's school.  This is because Andrew attends a small special education school for children with moderate to severe disabilities.  They never get visits.  Unlike when Andrew was mainstreamed in a public school and I arranged for another meteorologist to come in to talk to the students, kids with more significant disabilities who are not included with typical peers, usually don't get the same opportunities for enrichment.

Not only did Jeremy say yes when I asked him, he did so without hesitating.  All I know is this is making my kid's day, if not year. It is awesome to see Andrew so happy! If I could only get him to smile with his eyes open when getting his picture taken...

Sunday, November 7, 2010

Fall ... over too fast

Today was the day to get outside and gather up all the leaves which had fallen before the snow that is predicted for tomorrow comes. Raking and then bagging leaves is back-breaking work, but you feel like you are accomplishing something.  The single moms of New England do this by ourselves (who needs men?).   In my corner of the world, we also did some fall cleaning and re-arranging as we got a new sofa.

Walking around Horn Pond has always been something I have enjoyed.   Sometimes, it's with the kids. There have been countless laps pushing a stroller, countless visits to the Lion stone sculpture.  In addition, on many lonely mornings in years past, I would walk the Pond and then "climb" Horn Pond Mountain (a very tiny mountain) and sit, sometimes for hours.  The beautiful scenery, and the fact its a place memories have been made, makes me overlook the visually un-asthetic occasional beer bottle or other teenager- left item.  Sometimes, you just want a safe place to think, maybe even to quietly cry.  When you wear your heart on your sleeve, like I had tended to do, it's easy for it to get broken and fall into pieces. 

One of the things I loved about being married, raising my kids, and having a "normal" existence, was that I had a lot of volunteer roles. Through our small church, I was responsible for the care-taking needs of the congregation.  No one *wants* to eat a casserole I, of the culinarily-challenged, have prepared.  I arranged meals for those in need, sometimes served as a listening ear when our pastor was on vacation, helped serve dinner at the local soup kitchen, many times with my kids. I loved my work with our local social service agency, coordinating the "Wish Tree" for local children in need.  Helping at my kids' school through the PTO or SpedPac was second nature.  I have always cared, an effect perhaps of being an abandoned orphan back in India.  It was second nature to help when someone needed help, or to send a card (my friends call me the "Hallmark Lady"), or listen when someone needed an ear.

It never occurred to me that all the time and effort spent helping others could reasonably be construed as taking time away from my own family.  I loved my kids more than anything, my marriage however was not very strong.  Add two kids with significant special needs (plus a preemie in the middle) and we were doomed.

I love the fall. It's a time of reflection, a time to accept the past and move forward learning from the past. I thank God every day for my son, strangely for the fact his autism maybe doesn't allow him to say much and that his understanding is pretty impaired.  It must be in some ways a gift not to have to feel the emotions the rest of us do.  What he does say, most of the time, is echolalic. "I love you Mommy. I will love you when you are 42.  Do you know how much Carol and Chloe love you?".   He repeats these phrases over and over again, he hugs me.  He is by far the most important male in my life.  I miss so much about what my life used to be, but I am trying to embrace all the goodness and joy in it now.

Winter is coming too soon, the fall has been rushed.  I continue on a quest for strength and peace.  Sometimes, I feel I am all the names people (especially those who shouldn't matter) have thrown at me. It's what happens when you've been in an abusive relationship- you believe everything that person says. All the good and all the bad.  You feel tempted to do things you know won't make you feel good about yourself.  It's not like I felt like that Carrie Underwood song.  It's not the raw emotion Alannis Morrisette sings about.  It is a feeling of not being good enough.  The hurt and sadness haven't completely lifted in the past 4.5 years since my ex-husband smothered me and choked me in front of our kids.  After that, I let myself be loved by someone else. In truth, I loved him back with all my heart.  With him, it was about emotional control (and he was far from emotionally stable).   He wanted me to break friendships. The one most important to me, he eventually succeeded in destroying.  My kids lost their friends thanks to him.  Men who promise the world, want whatever you can physically offer, and then discard you when you no longer are of use to them, should all be put on a small island in the South Pacific. 

Some things that help me are long walks, good thoughts, and accepting love and joy from those around me.  I think I'll put on Toy Story 3 for Andrew and me.  There's got to be nothing nicer than cuddling up with my little boy, watching a wonderful movie, and maybe eating some popcorn, too.  A perfect fall evening, indeed.

Tuesday, November 2, 2010

Too mad at autism to meet halfway

I missed the whole anger/"why him?" phase nearly a decade ago when my son was diagnosed with an autism spectrum disorder (PDD-NOS).  Andrew was so clearly delayed and impaired, the diagnosis itself was a relief as it opened the doors to intensive therapy, in addition to his many hours of Early Intervention.  No one seemed surprised, as we had been given a provisional diagnosis 6 months before.  With a diagnosis in hand, Andrew started Building Blocks (Floortime therapy).  I got used to people sitting on my living room floor 20 hours+ each week.  Speech, OT, Developmental Educator, Social Workers... you name the discipline in child development, Andrew had "a person" with that certification.

We had a terrific group of friends. Just within the small circle of our closest friends, one couple had a daughter with PDD-NOS and another friend's husband grew up the sibling of a severely autistic brother.  The support somehow made it easier to cope.  I never blamed a shot, although I did have my doubts about whether 5 days of Pitocin pulsing through my bloodstream to my baby in an effort to get me delivered was a contributing factor.   I had a strong faith  (now I think the "God doesn't give you more than you can handle" mantra is just a phrase coined by someone who has never been challenged), a fabulous church family, and my own family (who minimally tried to be supportive of Andrew, but who I never got the sense thought it was that big of a deal).  I never got mad at Andrew having autism because we were so busy trying to help him make gains.

You know what? Now I am angry. After my meeting today, I realize just how affected by autism my child is. I am angry for everything that was done wrong, and for all the things that were not done to help him.  I mourn for the now young man behind the diagnosis whose potential can not be tapped into effectively due to crippling behaviors.  I cry for my son who is so obsessed with "loving" his girlfriend, his bear Chloe who he really thinks is my sister, with making weather lists, and talks endlessly about what station he will report the weather on, despite the fact his IQ measures in the mentally retarded range.  I am frustrated when trying to get Andrew's new shoes (with ties he can not tie independently) on his feet (he hates this), or when I have to wash his hair in the shower because he can't do it himself (at least he can't do it effectively).  Often, instead of using his words, he spits or screams. It breaks my heart.

I hate autism. I don't know what it is or where it came from, but I know it is not going away.  It has taken so much away from Andrew, and from our family. It is depressing to think about the future. Will he ever get back to the level he used to function at? How did his developmental trajectory get so off-course? How can I help him?  I am choosing not to meet the autism and its challenges halfway. Today, I choose to be furious with it and let it overtake, with my son asleep and at peace, me.  I hate the people who could be supporting him and our family and instead are petty and selfish.  Those so-called family and friends are missing getting to know a very interesting and special little boy.

He's not so little anymore, but he will always be the baby boy I took home from the hospital.  I whispered into his tiny ears that he could do anything he wanted and that I would love and support him always.  Andrew inspires me, his autism frustrates me.  Tonight, I feel awful for all he has gone through, knowing the road ahead is filled things he will find painful and frustrating, but that he needs to learn to grow in order to maximize his potential.  God help me if I were to accidentally run into the sped director in the district which I think did this to him- I think I would tell her to go to hell.  People should want to help children and not just save money, the old school system forgot that.

Ask me tomorrow if I am willing to meet autism halfway. Tonight, my stomach is in knots and the tears flow freely.

Monday, November 1, 2010

Meeting autism halfway

"My time to listen is tomorrow"
Tomorrow, I go for the very professionally-named "Parent Feedback Session" with the two highly respected neuro-psychologists who have been working with my kid.  They will discuss the hours of testing, record review, and parent input they've been given and present to me a picture of how Andrew thinks.  This isn't even like the parent-teacher conference you go to when your 11 year old kid has been bringing home A's and B's, or to complain to the teacher about your kid  negotiating with you for phone privileges in the evenings because they have friends who are calling.  For my eleven year old, there is a certain element of dread.   I don't want to hear what the doctors have to say because it is depressing.

Arguably, autism has been a part of Andrew since birth.  However, for years, with successful interventions, he was doing as well as could be expected.  He may not have had friends in the typical sense, but other kids, from school and church and certainly his sisters, loved him and accepted him for the quirky kid he was.  He was enrolled in a high-quality school program, off to speech and occupational therapy after school once a week, attending gym classes and swimming classes (we have fond memories of Mr. David from the Woburn YMCA), and going to play therapy with a peer or a sister.  There had been a girl in his class every year who nurtured him: Thank you April, Kaylee, and Kristin.  People loved Andrew, included him in birthday party invitations, came to his birthday parties, and played with him.  He was just "one of the students" in his elementary school.

Then, he moved schools and arguably his rates of academic and social success started to slip.  He stopped being able to learn most things.  The new school didn't have the right tools to help support him.  He didn't have friends. When he misbehaved, they sent him home.  In a collective nutshell, they didn't help him.

Which all leaves us, three years and a whole lot of knowledge later about who Andrew is, trying to figure out how to turn everything around. I'm an advocate, I do this for a living. Let me tell you, it's a hell of a lot harder when it is your own kid.  I know the graphs are going to show regression and that makes me ANGRY.  Nothing like a school district who should have known better, and having the testing showing Andrew was not making progress there.  The bright side is he somewhere else now, no longer are there incompetent people to "advocate" for or "teach" him.

Mostly, what Andrew needs is love and hugs and gentle care, care which needs to be firm a lot of the time.  Our lives are highly structured, designed around autism and its quirks.  I know all of this.  I just am scared to know the data: the numbers.  Will my kid test as mentally retarded?   In some ways, data is boring and meaningless when compared to an actual child.  In other ways, a lot of what will be said will guide me as to how to best advocate for Andrew. What kind of school will he go to? Will he ever be able to go back to inclusion with success?  Will he ever want to be friends with other kids? Play baseball, or talk meteorology, with peers?

Autism is no crueler than many other disabilities. Some kids have it a lot worse. I get that. What I don't get is why the change in his developmental trajectory.  He was going to Sunday School with a helper (an "Andrew's Angel"- thank you Lynda for that term), he was participating in typical peer activities. Now, he just wants to stay close to home. He hates his grandparents and one of his sisters. He doesn't have a church.

Please send some good karma tomorrow as the adults talk about what's going on with Andrew and figure out some ways to help him as we move forward.  Maybe that is meeting autism halfway- not embracing it, but not ignoring it, either.  Just living, sometimes very sadly, with it.