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.

Monday, November 1, 2010

Meeting autism halfway

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 A 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 A 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 A, 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 A 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 A. 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 "A'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 A 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.

Tuesday, October 26, 2010

Dreams

When I was 11 years old, an awkward middle schooler, I wanted to be a singer and was regularly appearing on a local kids-oriented TV show called "Ready to Go".  I took modeling classes, thinking that I, this big-boned, adopted Indian girl, could be a famous actress or model.  (This was somewhere in between wanting to become a US Senator and changing the law to allow non-American born citizens like me to run for President).  I swam on the swim team, making it to the States in backstroke.  I was socially pretty awkward with boys, but had a small and good group of friends.  I had my whole life in front of me. I had dreams and aspirations. I thought I would make something grand out of my life. (Footnote: clearly that didn't happen.)

Today, reality struck  as I sat in the waiting room at NESCA, listening to my 11 year old son intermittently scream while undergoing psychological/IQ testing by two very talented clinicians/testers.  He couldn't even cope- it was too hard for him.  During a break he had earned, we decided he needed the Leiter instead, which is a non-verbal intelligence test. A is verbal, he used to test with an average IQ despite his autism.  Not nowadays. Whatever is going on in his brain, he tests with an IQ in the 50's or 60's:  mental retardation for those older, intellectual or developmental disability for those of us now.

A's aspirations. Most involve being married to a girl who is a family friend who probably just looks at him as a unique kid, certainly not as her "boyfriend". Andrew has mapped out their lives together to age 30.  He writes detailed forecasts, sometimes for months, with ease.  He screams when he doesn't like "Mother Nature's" forecasts.   He wants to work at Channel 7, alongside his email/meteorologist buddy Jeremy Reiner. That fantasy world is the grand sum of Andrew's dreams.  He should dream high, every kid should.

I wonder if A will ever live on his own someday.  I wonder if he will ever have a real relationship.  Heck, I wonder if he will ever have a real friend again.  It breaks my heart to see how much he wants normal things, yet realize he can't really learn in any normal fashion anymore and certainly isn't able to be tested as functioning as anywhere close to his age. It's kind of like having a 6 year old in an 11 year old's body. Maybe it will be that way forever.

My dreams changed over the years. All it turns out I wanted was to be a wife and mother and have a happy family.  I just want Andrew to attain all his dreams, and today was a reality check I was not ready for.  Parenting a child with autism and intellectual disabilities sucks sometimes.

God, I love him and his quirks to pieces.  Tonight, my heart just breaks, maybe more for me and what I want for him than for the simple things he wants for himself. 11 year olds should have big dreams and hopes. I am mourning the little boy I lost to autism somewhere along the way.

Monday, October 18, 2010

Pure joy

This pretty much says it all about how great being a mom can be.


More pictures can be found here.

Thursday, October 14, 2010

Practicing Kindness

If I had to choose one life lesson that I hope my kids carry with them as they grow into adults, it would be practicing kindness towards others.   It's not hard to be nice.

At Wendy's (insert "Laurel is severely culinarily challenged" jokes here), there was a gentleman,who happened to have a modified wheelchair next to the table. He was enjoying dinner alone.  As he struggled to get up from the seat and into his wheelchair, it broke my heart because you could see (I think) ) he was in pain and discomfort.

Sitting right next to him was a rather  preppy looking family with 2 preteens texting on their cell phones, all with Polo/designer clothes, and the requisite dye job on the mom, Dad talking loudly on his cell phone about some financial deal wearing cufflinks that probably cost more than all my jewelry combined.   The "perfect little family".  (I perhaps have my own work to do on being judgmental).

I was eating my baked potato with my girls. The man was having an awful time maneuvering his wheelchair, while holding the tray that he was trying to throw away.  The aforementioned family's girls stared at him, while the parents intently looked at their food. He was a foot away from their table.  No offer of help came from them.

I walked over and asked if I could take his tray for him.  He got tears in his tears and said thank you and apologized for some purported inconvenience , with very garbled speech.   I said, loud enough to let the family and the staff and my kids hear it, "It's my pleasure.  You have nothing to be sorry for.  Have a good night".

People should help people. It's not that complicated.  The entire episode reminded me that our kids learn by example.   My girls (whose backs were to the situation and didn't see anything until I went over to help) asked me why the other people did not help.  I reminded them to not worry about what other people choose to do because we don't know why their hearts don't tell them to.  I reminded them how good it makes one's heart to provide someone a little TLC and care.

We have a person with a disability in our family.  My daughters certainly already get "it" a lot more than most kids do.   Last night, I was in a really grumpy mood.  I needed an attitude adjustment.  I got one from such a small event. My daughters saw kindness in action.  All was good.

Wednesday, September 29, 2010

The biggest success in my life? Thoughts on my birthday...

My dear friend's kids have threatened to call me at 6:30 a.m. tomorrow and sing "Happy Birthday".  It's not an important birthday by any means, but it has been an incredible year.

What am I most proud of accomplishing? Being a mom to these four amazing kids.

I have done really good work for clients and helped a lot of kids and feel fortunate to have such a great job.

I lost God, but found happiness and peace elsewhere.

My extended family is gone, but the family I get to choose, my wonderful friends, are the greatest support system ever.
 
 I love Andrew's big smile, especially when holding his very special bear, Tucker. Tucker went to college with Andrew's best big friend Chip. Tucker arrived back at our house the other day having graduated from Elon, just like Chip.  Chip, a kid who I used to babysit, who then did the same for my son, is now in grad school.  I just read the college recommendation I wrote for him.   I feel old.  Kind of like the world's oldest thirty-something.
My oldest is a teenager, which makes me officially ancient. What a bright, beautiful smile she has. 

Life isn't perfect, or healthy. There's a lot of being alone and I am not an alone person. But I am a survivor and I am grateful for making it through the year a lot wiser, a bit stronger, and markedly more at peace than before.  I miss my "old life", my birthday dinners with my girlfriends (especially the one they took me to when my preemie was still in the hospital), but I've accepted this new chapter and am a lucky girl.

Somebody asked me my birthday wishes. Except for the most important "happy and healthy kids and happy and healthy me":
1) Someone to scrub the bathrooms and kitchen in my house (boys are messy!)
2) A facial
3) A massage (preferably by a cute guy by candlelight, but I'll settle for a great massage therapist)
4) An amazing cut and color
5) A bunch of kick-ass personal training sessions
6) An Edible Arrangement with chocolate covered anything
7)  Flowers (since no one buys them for me but, well, me).

World peace, or at least peace in my family, is high on the list, too.

Strange but true fact... No one has any idea when my real birthday, or age,  is.  I was left at Mother Teresa's orphanage, where the nuns randomly select birthdays for their orphans.  

"Kind words can be short and easy to speak, but their echoes are truly endless."
~ Mother Theresa

Monday, September 20, 2010

4 pounds to 10 years

It's hard to believe 10 years ago, I was 32.5 weeks pregnant, getting dinner ready and putting kids to bed, having made plans to drop off A with my mom in the morning so I could go in for a routine non-stress test. The baby flunked...

A day of tests, an expectation of a week or two hospital stay to let baby cook more, and then the specialized ultrasound which babies are supposed to score 6/8, she got a 1/8, which led to an emergency c-section... 

We welcomed Emily Elizabeth (no, not named after Clifford's friend). A bit loopy from the drugs and the surgery, looking at this little 4 pound baby in an incubator in the special care nursery, I could hardly believe this tiny being was here. After all, she wasn't due until November and there were no problems with my pregnancy except for the expectation of pre-eclampsia setting in somewhere around week 36/37 as it had before.

E was beautiful, and remains so, her skin was dark (like mine- one came out looking like they had an Indian mom!), but she had "no meat on her bones".  Just don't tell her she looked like an under-nourished chicken as she takes great offense.  She had a hard time eating (and pumping was a disaster), gaining weight, and keeping her body temperature up.  She was the size of a doll.  So many friends sent flowers, quite a few came to visit her (have the pictures of everyone suited up in gowns to come into the NICU), and more than I know were saying prayers.  



That tiny preemie is going to be "double digits" tomorrow.  She is the kindest kid you will ever meet and brings so much joy into our family.  She truly is everyone's "best friend".

Happy 10th Birthday, E! I love you very much.

Wednesday, September 15, 2010

Joy

Everyone deserves to have JOY in their life.  Something that is not under-stated, that makes you smile inside and out, and gives you a reason to feel hope.  Today brought the unadulterated joy of seeing my son happy, going to his new school, and coming home grinning from ear-to-ear..

To provide the counter-balance, I also saw someone I love in a whole lot of pain. Pain I can't take away, seeing her process things no one should have to, more or less someone her age should ever see.  I could feel the sorrow inside her, and tried to help soothe it.

Finally, I realized that people move on. The only adult relationship which is supposed to be permanent is marriage, and that one doesn't always work out.  Seeing someone has moved on without you is indescribable agony, even if all you wish for is peace for them.  I wonder why hearts don't heal.

Joy is subjective, it shows up when we least expect it, and fails us in times we really need it.  Yet, sometimes, the day redeems itself and I find peace curling up with my cat, watching mindless TV (tonight's choice: Parenthood), or snuggling with a little boy whose spirit has been renewed.  Joy came back, in small ways, but I am grateful it made its presence known.

In fact, today autism didn't suck. I'll take that for once.

Saturday, September 11, 2010

A September 11th blessing

At 10:42 p.m on 9/11/97, I gave birth to a beautiful 6 pound, 15 ounce baby girl.  Three months later, she almost died after her heart stopped working.  She has faced so many challenges in her life.  Today, we celebrated her entrance to teenage-dom with a small party with her friends, teachers, and those who love her.

On her 4th birthday, our country was attacked. That evening,  we muddled through a birthday celebration with our close friends J and J and K and J and their baby. Once the kids were settled, we adults all sat down, in shock,  and watched a Presidential Address "from a secure location"  in my living room.  J, soon thereafter, drew a picture of what she described as a "plane crashing into a building".  I still have that picture.  The comments people made to her which followed in the days and years were not fair.  She's just a kid.  What happened on that day is awful and evil, but it doesn't define her or her birthday.

It is my prayer and biggest hope that she is happy and thrives and accomplishes all she wants in life.  I love you, J.  May you have a very Happy Birthday and a year filled with many blessings and much joy.

Friday, September 10, 2010

Life is good, no GREAT

The TEAM meeting I was so anxious about, and scared of, was pleasant and agreeable.  Deep down, I had a feeling the special ed director (who I have gone toe- to- toe with on many occasions as a parent and advocate) was going to do the right thing. And she did.  Not only will Andrew be attending a great school program at a collaborative (25 kids total, he'll be in a classroom of 3), the new school really wants him there and has some wonderful ideas.  There was an air of cooperation in the room- very peaceful.

It was very touching to see the sped director lead Andrew over to a computer in the room and help him get started looking up weather, or one of the other quirky things he does. This woman has known him since he was 3 and I really believe she cares about him.  It's not my place to put words in anyone's mouth, but there was a certain under-lying air of "what happened to this kid?".

One amusing moment was when I relayed that Andrew's old (AWFUL) school on a few occasions sent him home for behaviors. (Basically, THE worst thing to do to a kid with autism because their behavior is reinforced--- they get what they want, escape from the demand).  The BCBA from the new school joked "We make the kids sign a contract that no matter what they do, they won't get sent home, they are stuck with us all day, maybe all night, too".  Love her.

I came home to a barrage of cards and gifts for Miss J, who turns 13 tomorrow.  So many people love her and wanted to celebrate her milestone.  My friends, her classmates, teachers, even my clients.  The child could put a serious dent in the Apple Store after her birthday party at the mall (pizza and cake!).  Then, she could go across the street to Barnes and Noble and do some damage there.  What is really sweet are the messages in the cards.  A bouquet of balloons came from friends we barely know, a flower cake is being delivered by a friend and client of mine.  This "13" is going to be the best birthday ever.  The moms who called me from her class were all so sweet, their kids, similar to her, never get invited to birthday parties, so everyone is coming.  How many pizzas does it take to feed 9 hungry middle-schoolers and a bunch of adult friends?

We ended the day with a visit from a new respite person for Andrew. My friend's son is a perfect match for Andrew.  Yay for connections with men who have "been there". Welcome to our fun-loving, chaotic family, Sam.

Life is indeed really good.  We are crazy-blessed to have such a village of community and love and care.  My faith in humanity has been restored and I am so happy to have found such joy in my kids and all they are accomplishing.

One question: How again did I get old enough to be the mother of a teenager?

Tuesday, September 7, 2010

Friends

I have been blessed to have made some amazing friends. From those who were there when my child was diagnosed with PDD-NOS, when we had to learn how to welcome autism into our family, to being there after our daughter was born nearly two months premature, to what seems like the small task of being willing to come to the hospital and help me walk post c-section, I am forever indebted.  

Someone who has been a steadfast friend for five years, starting while working with my daughter, is my rock and the one person I know I can always count on no matter what. She has a no-BS meter which keeps me in check.   There is someone who I have reconnected after 5 years with who loves me and my kids, who thought nothing of spending an ER visit with after a winter night, who has opened her family's homes to my family.  To my friends who spent numerous mornings and afternoons in very unhappy places supporting me during a crappy few years, who made sure I had a place to live and to be with my children, I am grateful.  My old church in many ways taught me what friendship was--- I cherish the years of celebrating birthdays and Christmases, and even having cookouts, with people who loved God like I did and who happened to love my kids. There is much photographic evidence of this group of friends- wives, husbands and kids.  How different all our lives have turned out.  I'd be remiss not to mention the prayers of so many which I believe were heard.


There are long-distance friends in Florida, New York,Washington and of course locally here in MA who showed me love and understanding and compassion when my heart and spirit were broken. An invitation to supper, or a walk together, or getting brunch at Soundbites.  Not to be mitigated, the hundreds of playdates with kids at parks and our homes, hikes in the Fells, time spent with people who I really enjoyed being with.

I always thought (pre-2007, that is) that the biggest obstacle I would face would be my kids' challenges: mitochondrial disease and autism (prematurity seemed easy compared to those).  My daughter almost died in 1997 and in 2001, a diagnosis was assumed that meant my son would never do the things other kids did. Thanks to my friends, we live each day to the fullest and consider every day a victory.  

Three things stand out in my memory as particularly touching....

When Julia was critically ill, there was a prayer circle/service at my church which dozens of people participated in, praying for her strength. It worked, she left the ICU soon after.


When Andrew was diagnosed with autism, so many people provided love and support. Love for Andrew was felt from Colorado ( a friend's family)  to California (our dear friends P&T whose daughter had been diagnosed two years before with the same thing).  For 5 years, our friends and family walked as "Andrew's Team" to raise money for autism research for Autism Speaks  Everyone walked for their own reasons, many had been affected by autism in other parts of their lives, but dozens of people can together in the name of Andrew.  I was so proud to see so many people wear his face on their green and blue t-shirts. Raising upwards of $35,000 was a bonus!

Finally, when Emily was born, so tiny and so unexpectedly, there were more visitors to Mount Auburn than I could count.  Many friends donned plastic aprons and and came into the NICU to meet this tiny 4 pound (by this time, 3.5 pound) miracle.  There were flowers covering one side of my hospital room.  Perhaps most special, while Emily was still in the hospital, my girlfriends took me out for my birthday (how unimportant that seemed), I think that normalcy meant so much (birthdays out were a tradition).  My dear friend took me back to visit Emily, still in the NICU, after our dinner together. People really became a village to help us through such a traumatic time.  At some point afterwards, friends from church gave us a $500 giftcard for food so we wouldn't have to worry about meals. To this day, I don't know who coordinated that.

Last year, my girlfriends were amazing.   From accompanying me to appointments, to making meals for the kids and their friends., to just listening, they were my rock. After a summer spent dealing with so much stress, my heart was spitting out weird EKG's, I had syncope spells, I was breaking out in hives for no reason.   After two years of hell, I thought I had paid my dues to the penance club.  Fall 2009 didn't bring much of a break.  Something as simple as being invited to share a meal, or cup of coffee, meant a lot.  Then, there are the ladies from my special moms group who aren't touchy-feely, but are amazingly supportive and always kind. Love you E, J, T, J,. M, C, S, and everyone.


I am forever indebted to all the women who have played such special roles in my life.  I hope I have been able to give back even 1/2 of what they have given to me.  I would, and did, do anything for a friend. Frankly, I never could understand how a good friend would do anything but.  It takes a village to raise a child and I am indeed very blessed there is a large village enveloping my family.

Wednesday, September 1, 2010

Technology and connections

Running into old friends, either in person or online, has become a regular occurrence in what was my incredibly boring and predictable life.  Last week, thanks to LinkedIn, I reconnected with my friend Linda, mom of two boys Julia and Em's ages, who was for a short time part of the social circle we had at our small church.  She and her husband lived close to us and our kids played together.  I found some pictures from two baby showers, one thrown for me by a friend, the next thrown by that friend for me, that L was in holding her then-little one (who turned 10 today!).

As it is every time I run into an old friend from church, there are some *interesting* discussions about what has transpired since people knew me as a boring, married mom.  In this case, there was no surprise, and L has an equally *interesting* life story over the past few years. (Nothing equals the shock value of another old friend from church who was having an affair with her hubby's best childhood friend when their daughter was a baby, left the husband, and proceeded to have a baby with the boyfriend...).   Heather, another old friend from church is a nurse-midwife (a very cool job), with 4 kids of her own (like me),  one of whom has autism like Andrew.  It was great to open my inbox and read a note from her.

Last month, Karen, my former editor at the Burlington Union found me on LinkedIn. Karen gave me my first break writing. I love reading my portfolio of columns (25 of them in total).  A successful lawyer now, she is a special part of my past.

In a perhaps overzealous effort to spend a gift certificate a friend gave me, I brought Andrew with me to the local nail salon. What a champ he was while I got my toes and fingers pampered. A voice called "Laurel" from behind me as the polish was drying. I couldn't place the face for a few seconds, and was surprised to find a friend from middle and high school I hadn't seen in 17 years.  She is a ski instructor up at Waterville Valley (lucky her!) and happened to be down in Burlington visiting family.  We had a nice conversation (Andrew was good company) and the experience made my day. Of course, we both had our Blackberries and friended each other on Facebook right away.

Whether it be running into someone at a local haunt, or seeing a familiar name in my inbox, the connections that are being renewed are certainly fun.  It almost makes up for the fact that there are others I'd like to re-kindle friendships with who I am not running into online or in person.  The world is small indeed and, for once, friends and connections and family seem to overshadow autism. Maybe that balance is coming back because this sure seems like what it feels like to be happy.

Saturday, August 14, 2010

A letter to my son

Dear Andrew,

Today is your 11th birthday. (For the record, it's sunny and 75 degrees out.)  I think you are the bravest and hardest working boy in the world.  Your autism holds you back sometimes, but it's also brought so many fun and wonderful things to our lives. Some of your interests aka obsessions have included: the most amazing drawings of houses a preschooler can make, home-made calendars, Presidents, Blues Clues, Weather forecasts and, of course, Build a Bears.  You have an amazing gift: memorization.  You can tell someone  born on April 4, 1967, what day of the week that was without blinking.  Pretty neat, indeed.

Some of the things that make me smile when thinking about you include: the Buzz Lightyear tent with a bean bag in it to sleep on, stuffed animal forts, you saying "I love you" back to me for the first time when you were 5, the purple tutu, and many tender and fun moments with Emily, Sarah & Julia, too.  Lots of squishy hugs, body socks, brushes, lotion, and your beloved  bear hug vest have all brought you joy.

I know there is a lot you can't do now, and maybe won't be able to do. Some are even things you used to be able to do.  Have friends, going to a regular school, or your prom, or college. But, there is so much I know you can do and will do.  Part of me wants to scream, "Screw autism".  It doesn't define you  anymore today than on the cold February morning the neurologist at Mass General officially gave you the diagnosis. I am very grateful  to the many wonderful people (the list of Andrew's "people" throughout the years would go on for pages), who have helped you along the way.  Your sisters love you, despite the sometimes unflattering and unkind behaviors.  Our friends love you and accept you for the quirky kid you are.  Your dad and  I love you to pieces.

Of course, I wish you were home with us to celebrate.  You will be soon.  I know how much you want to be 11, as you told us for months how awful 10 was. You are a very perceptive kid.   Emily and I will bring a chocolate-chocolate birthday cake to the hospital and tell you how loved you are and how happy we are to celebrate your birthday.  The question is: will you hear it?  I hope so.

Love always,
Mom

Chocolate cake with chocolate frosting and his best friend make a fabulous birthday celebration!

Sunday, August 8, 2010

A weekend in the Berkshires

I started writing this while sitting on the porch watching the kids play badminton in the vast backyard of our friends' home in Western Massachusetts.  It's far too easy to forget that the Commonwealth stretches beyond Worcester.  We've now visited the Berkshires for two very fun and relaxing weekends, once in the winter during the kids' school break, where there was lots of playing in the snow, and now in the summer.  It's beautiful to be in the foothills of the mountains, with swimming and outdoor play at the door.

Yesterday, we went to Mount Greylock, the highest peak in the state.  We hiked with the kids, collecting blueberries for pancakes and bugs for our little friend the insect-collector.  The top of Mt. Greylock features a tower built in the 1930's as a memorial- very neat.  The day was clear and the views were gorgeous- we could see the Green Mountains to the North and Wachusett to the East.  It was not too hot and the kids are finally old enough to do some exploring further than a hands length away from me.  Seeing their independence makes me so proud of them.

On our hike, we also came across the wreckage of a small plane. The signage notes this 2 engine Cessna went down during a routine flight from Manhattan to Albany to deliver newspapers.  The crash happened in August and the wreckage was not discovered until December, by hunters.  It was an interesting piece of history to come across during what was a leisurely hike for 4 kids and 2 adults.

The children obtained Passports issued by the DCR, where each landmark offers a stamp.  We have lots of sight-seeing and traveling to do to fill the books with stamps. Some venues are close to home (ie: the Middlesex Fells), but many are scattered in parts of the state we haven't traveled ever or recently.

One of the nicest parts of this weekend was the cool weather we had last night... I love the feel of sleeping with an open window and a heavy blanket on top of me. If only I could lose my reliance on white noise to sleep (it was a habit I picked up when I got married and it never left).  Seeing my youngest daughters with friends, so happy, makes my heart smile indeed.  The fresh food from the garden (think tomatoes, mozzarella and fresh basil or homemade pasta sauce and meatballs--- yum).

In the same vein, I really miss my little boy.  It's all a balancing act, I suppose.  A break from autism that was not wanted at least gave the siblings a few days to make some great memories.

Moments like these are all too rare, taking time to sit, breathe in the fresh air, and just be, enjoying time with dear friends and family.  On the way home, we laughed so hard, singing very loud and off-key to all variety of 80's music (anyone for the Eurthymics, Wilson Philips, or "Play this Funky Music"?). No one can dance while seated quite as creatively as my youngest.  My girls have colored, clip-on hair extensions in, are tanned and happy, and their mom is happy and exhausted and feeling very grateful indeed.

Tuesday, August 3, 2010

things which make my heart smile

1.  my kids laughter and smiles.
2.  seeing advances made in the treatment of autism.  hoping that these things will help other families to not go through what we have with our little boy.  i am proud of the small things i have been able to contribute to this: captain-ing "andrew's team" for autism speaks/naar, raising over $35,000 for autism research. also, testifying at the state house on behalf of a bill which ensured all the needs of children with autism would be addressed by a child's school-based iep team.
3. the beauty of both a sunrise and a sunset. knowing someday i will share those with someone i love again.
4. the sound of my daughter, who struggles mightily with reading and writing, reading me her bedtime story.
5. the sound of my Em, plotting with her friends and just being a 9 year old, and not her brother's keeper.
6. A talking to his bears or saying "i love you mommy". these moments are all too rare, nowadays.
7. J talking about normal things kids worry about when they are about to be teens, like boys. she is such a beautiful young woman.
 8. any conversation with my kids' dad which is peaceful and well-reasoned. it hasn't always been like this and the opportunities are appreciated.
9. hearing from my doctor today "do you still have your gallbladder" and being totally calm.  if i need it removed  to make the sharp, searing pain in my chest go away, so be it. not a big deal.
10.  losing another 10 pounds on the scale- bringing a grand total of weight loss to 34 pounds since january.
11.  really meaning it when i say i am doing well.
12. a well-mixed margarita and a good friend, on my back porch, like tonight...
13. a purring cat who knows where her litter box is.
14. looking through photo albums at so many memories of my family and friends.
15. knowing the future holds only positive and good things.
16. friends who don't sugarcoat things, make me laugh, and are my chosen family.

Tuesday, June 29, 2010

Playing tourist for the day

Today, I took the T into the city and explored.  Not very exciting, right,  since I have lived here for three decades and been into Boston hundreds of times. However, I discovered new things that I hadn't seen before (there is no longer a highway running through the city, imagine that),was reminded of the things I really don't care for (the T not running on time), as well as many of the gems the city holds.  For years, the city has been a place I went to for appointments, the occasional North End dinner out with friends, or the even more occasional show at the Wang Center.

Finding clothes that fit is challenging nowadays, but I donned a comfy skirt and tank top for my tourist adventure.  There is an MBTA express bus which departs at the top of my street and delivers one directly to the Old State House/Fanueil Hall area.  For years, this area was a place to explore when I was a teenager, getting on the T for adventures into the "big city".  I bought my dress for our 8th grade "Final Fling" at a boutique in Quincy Market and took many trips with friends to the very long Food Court there. It is a tourist trap, however, and I steered clear of it.

What I did spend some time doing was walking around the area between Quincy Market and the Aquarium. What used to be ugly (the Central Artery) is now a place for families to walk. It took a few moments to even place in my mind this general location I had been in many times previously.  It is amazing how relatively quiet it is.  The waterfront is a quick walk and it was indeed bustling on this hot, humid summer day.

Walking towards Downtown Crossing, past "the Lollipop building", where I worked while at Fidelity, I felt markedly out of place with the dozens of business people in suits.  Downtown Crossing is allegedly much safer now (the so-called Combat Zone is gone), but gone as well is Filenes and other former mainstays.  The Corner Mall still looked, and smelled, suspiciously the same when I went in for a quick iced coffee from DD's.

My adventure continued on Newbury Street after an Orange Line ride to Back Bay station. The apartments there were the scene of many nights after working on one campaign or another, crashing at my friend Megan's place (gorgeous and financed by her Wellesley parents). It was so funny to walk through Copley Place, location of many drinks and meals at Chili's where my friend Regan waitressed. After walking through Copley, I eagerly explored the Farmers Market in Copley Square. So many yummy treats!

On Newbury Street, where the only thing I ever purchased was music and food, it was fun to "people-watch".  Women in 4 inch heels and designer clothes, attractive teenagers with cash to spend... A trip to the used bookstore proved a nice, air-conditioned break, as well as a place to play.  After getting my hair done at a fancy salon, I walked towards the Public Gardens.

Seeing the small figure-8 shaped pond brought back so many memories, of my own childhood and of taking my own kids for rides on the swan boats and seeing the "Make Way for Ducklings" bronzed statues. What wonderful symbols of Boston, and the innocence of childhood, these figures are. I treasure the copy of the Robert McCloskey book my kids' uncle gave my oldest when she was born.

Boston looks different through the eyes of a wandering native, than it does of a seasoned city dweller or of a tourist.  What a nice, if sticky, day was had. I would be lying, however, if I didn't admit it is might nice to be sitting on my back porch with ice water and a breeze as I type this.  I intend to make a point of going back to the city, 10 miles from home, more often and getting to know it better.