Tuesday, August 30, 2011

Almost twenty years later...

This is what I looked like when I started writing seriously nearly twenty years ago.  I had longer, curlier, and softer hair, a great complexion, but the same big smile.  I wrote for my friend Karen, who was then the editor of the Burlington Union, my hometown's local paper.  I think I made $35/column, which seemed like a lot of money, especially for doing something I loved.  Politics (a rabid Massachusetts liberal was I), music and concert reviews, all the relationship advice I could offer being a teenager in the throes of young love, adoption, social conscience developed as a child, church-- you name it. I wrote about it.

I'm not sure I was that good.  But Community Newspapers had awards for columnists and I won one.  It was the first commendation I received after realizing at 14, that being a singer was not going to happen (thanks, Dad, though for paying for me to record a demo tape of "All This Time"), my modeling dreams were going up in smoke as I was 5"4, a size 10/12, and my skin was brown.  The acting I did after "Ready to Go" ended up being incredibly expensive; community theater was fun, but not my thing.  I played amazing soccer as a goalie and swam, as far as in the New Englands for back-stroke, but I was never the high school, pro-type athlete.  Neither was did I experience the standard route through high school to college.  Always an over-achiever, I found myself in what no on around me, including me, would call what it was: a pretty major depression.  

Coming out of that funk, meeting a great guy/being the girlfriend of a musician, spending less time at home, working on the 1994 coordinated Democratic campaign in a warehouse in Southie answering phones for Shannon O'Brien, dating a bunch of different, and older, guys, and finding my way in the world, to enrolling in classes, and having a lot of fun. 

Then, I got married.  I had babies.  Life changed.

Life now is defined by being a mom, and specifically about parenting a child with autism, and another with other, more taboo disabilities. It's a lot of fun to read my old clippings, 4 years worth, when my writing was definitely funnier and possibly more fluid.  

It's a kind of coming full circle.  Being nominated for awards for my writing, signing a book contract (which may or may not ever see the light of day, but a publishing house a year ago thought it worth pursuing).  I've worked a lot to be able to tell stories from my life in a way that does not exploit my kids.  It's hard to write about marriage, divorce, dating (from falling in love, hard, to hating someone's actions, some abusive, others just mean), to starting over. 

We all have demons, BUT we all have accomplishments.  Through writing, I can tell the stories of my life, and of my family's life, and maybe make someone laugh, feel emotion, or just walk away from the paper or computer screen thinking about something they hadn't before. 

Happy reading!

Tuesday, August 23, 2011

Taking stock

Over the past week, I've spent a few dozen hours *sanitizing* this blog.  It's an incredible honor to be nominated for awards from online special education parenting communities. As well, a national domestic violence program has asked if I would agree to allow publishing of an entry on their website and in their newsletter.  My blogging started out as basic, brief "what I did today" posts, ways to keep in touch with friends more than anything.  It has evolved into a well-written and coherent account of the joys and challenges of being a single mom with *spirited* children.   Recurring themes include trying to balance a job I both love and hate, my faith and related love-hate relationship with God, female friendships and how integral they are, starting over after experiencing different forms of domestic violence in not one but two relationships, the prison of autism my son and our family lives in, special education and how it truly is a civil right, health and healing,  and the ways I keep myself sane, *usually* with a smile on my face.

Use of first names will become commonplace; free speech is constitutionally protected.  It is somewhat amusing that people who have behaved badly, or unkindly, wanting to remain anonymous and think that is their right.  No one has the right to be a bully.

It is thanks to all of you that my writing is considered meaningful, that my journey parenting kids with special needs, trying to move beyond relationships where I was physically and/or emotionally battered and knowing that, after five years, I am committed to being healthy and single and never again putting my faith in a partner, is considered relevant.  The revenge fantasies have been mostly played out (a la "Before He Cheats" and "You Oughta Know"), but no healing has come from them.  It doesn't change feeling enormously lonely, something that I have never pretended isn't a day-to-day struggle.   Who wants to be alone, especially parenting four amazing, but challenging, kids?

Simply put, my kids get 100% of my emotional energies.  May everyone have the opportunity to share their stories, in the hopes they could help someone else heal, or just make it through another day, by knowing they are not alone.  That is my hope of what this blog can provide its readers.

Wednesday, August 17, 2011

it takes a village to pay it forward

Two principles integral to my life are "it takes a village" and "pay it forward".  Not just words; these are concepts to live by.  This week has provided the opportunity to support a family starting to heal from domestic violence.

Domestic violence within a loving home filled with children just seems so wrong.  I remember.  It is 2 a.m. on a cold winter night; the doctor covering for my PCP returns my page.  In a small voice, I explain that my husband had pulled my middle finger back so far it was grotesquely bent.  The male doctor non-chalantly, and perhaps a bit annoyed at being woken up from his beauty sleep, suggested a trip to the emergency room.  I didn't go, but I should have because the episodes happened again... and again.

There have been so many incredible and generous people who have been part of our village, providing love and support in many forms to my children during a very tough few years.  It seems only natural to pay that kindness forward, to a family led by an amazing mom who has no idea the strength she does have.  Holding her in my arms after dropping off some bags of food, through her emotions and tears, she swore she wanted to write thank you notes and couldn't imagine that people cared this much. 

I do care.  My family cares.  My friends care.  My clients care.  We will help her through this by providing some of the physical "things" she needs, but also listening ears when and if she wants them.  I've been there, even now he tries to cause me pain. Some days it works, most days I just ignore him.

What is a village? It might be extended family, friends, or a faith community (church/temple). But, often times, when those supports don't exist or are stretched thin, it can include colleagues and sometimes folks who want to stay anonymous.  (I remember "Santa Claus" showing up on my doorstep in 2007, when I had no money to buy gifts for my kids, and when their stockings were filled with M&M tubes, ponytail holders, and 99 cent bottles of nail polish).  Three years ago, dear friends offered to serve as trustees so that I could buy property and rebuild my credit as a single person, not attached to my ex-husband.  That is obviously a large offering, but the small things (ie: food, a funny and/or inspiring card, rides, childcare, or simply a listening ear) meant just as much.

What does it mean to pay it forward?  To me, it signifies being the recipient of a good deed and recognizing and honoring that by practicing random acts of kindness to another.  The world survives, and our communities thrive, when folks help one another.  In the circle of life, sometimes you are able to give help, sometimes you need to learn how to accept help even if it goes against every grain of your soul, and sometimes to keep your sanity in-tact you choose to save your emotional strength for those you love and only them.  But we are never in the same place permanently, those of us with empathy, at least.

My nine year old and I discussed donating money and goods to families who are going through tough times.  She may be single-digits, but she is wise beyond her years. She remembers her father smothering me with a pillow, as well as the depression I went through a year after that episode. We figured out that simply smiling at someone who might be having a bad day at Horn Pond or Dunkin' Donuts is a way to make the world just a tiny bit brighter.  It is just part of our personalities to be friendly and offer a smiling "thanks- have a nice day" to everyone, including those who bag our groceries and sweep the floor.   Likewise, I typically make eye contact and say hello to those I pass on a walk or hike.  Common courtesy, not being fake, never causes harm and usually encourages good.

Another family is going through something similar to the the life-changing, mind-numbing, and downright cruel experience we lived four years ago.  There is no melodic terminology to describe that kind of pain.  Simply put, it sucks, as well it can very well suck the humanity out of your soul.  Hopefully, we are able to "pay it forward" and help be part of the village of people who can help lift the spirits of folks who are going through the darkest of dark days.


Sunday, August 14, 2011

A letter to my son

August 14, 2011 @ Bertucci's
Dear Andrew,

Today is your 12th birthday. (For the record, it's partly 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 peace when your brain was not being kind to you, making you feel like you were crawling out of your skin and causing you unrest.

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 the moon and back.

Today has been a mellow day, too mellow if you ask your sisters, but it was just right for you.  You were a superstar at dinner, full of smiles, and I know how much you enjoyed your cake here at home. It brings me so much happiness to see you happy.  Thank you for all you give me.  You are my favorite 12 year old in the world!

Love always,
Mom

Wednesday, August 10, 2011

Advocacy

In the course of designing a professional website, I wrote the following about my practice. 



In 2005,  I began working as a special education advocate.  I am the parent of four children, three with Individualized Education Programs. Two of my children have complex disabilities (autism and mitochondrial disorder/emotional disability/medically fragile); both attend private day schools.  I work mainly with preschool and elementary students, with a small group of middle school clients.

*Please note that I do not work with high school or transition-age students (14-22) as I don't feel I have the training, knowledge, and expertise to represent their needs fully and with the same high level of skill I have with the "younger set".

My practice successfully represents children with mental health diagnoses, both as their primary disabilities, and also as co-morbid diagnoses to autism spectrum disorder.   I have received extensive training through Wrightslaw and have served as a trainer for both the Federation for Children with Special Needs and the Early Intervention Training Center.  I have worked as a consultant at the Early Intervention Training Center, the Massachusetts Department of Public Health, and at the Federation (one contract included designing and assessing a workshop for families of kids transitioning out of Early Intervention). 

In a typical month, between 15-25% of my caseload is comprised of pro-bono or reduced fee cases.  I believe every child deserves the support of an advocate and that protecting the special education rights of children is truly a civil rights issue. That said, it would be a good day when my services would cease to be needed.  The system can and should work better and parents should feel confident advocating for the education needs of their kids.   I'd love nothing more than being about to work in a classroom or play with kids for a living.

Some of the major accomplishments of my career have been securing, twice in tandem with a special education attorney, and twice working alone, private day school placements for children with autism.  Filing hearing requests to assist parents and helping support them at pre-hearing conferences and in settlement talks are unique skills I bring to the table as an advocate.  I have negotiated settlement agreements for three clients after pre-hearing conferences.  I possess the knowledge of the law, complete familiarity with my client's case, and the people skills to obtain desired and fair outcomes.

I support parents in gaining more advocacy skills and knowledge of the laws and regulations governing their children's special education services.  If and when I or another advocate or attorney are no longer in the picture, it is my hope parents are able to advocate for their children effectively and without being afraid to speak up.  I believe that creating positive and respectful partnerships between parents and school teams leads to best outcomes for children.

I provide consultation to families in the form of record review, IEP review and response (ie: IEP Rejection letters),  classroom observation, and communication with the district on behalf of a family to ease some of their day-to-day stress.

Tuesday, August 9, 2011

A moment of grace

A commonality in my posts is the timing; I tend to write after my son goes to sleep.  When he is at peace, wrapped up in a lightweight blanket, window open with the gentle breeze blowing his now too long hair, it seems as if autism is far, far away.  Hearing the rhythmic breathing and being able to give him a kiss without hearing the loud piercing of a scream or feeling him pull away when I try to hug him makes my heart sing with joy.

Sadly, the moments of real connection and peace do seem to come, at least in recent months, only while Andrew is off in dreamland.  All his obsessions  (Little People, Blues Clues, Buzz Lightyear, Presidents, House/Architecture, Birthdays, Weather and Build-A-Bears) over the years, during sleep, probably inhabit corners of his mind. 

In the darkness, I reflect upon his journey.  I remember the moments that brought tears of joy to my eyes.  The first time he talked- really talked- when he was 3.5.  The first time he said goodnight and I love you.  The first time another child asked him to play.  The first time he made it through standing on the stage with his class during an assembly, singing and reciting a poem nearly in-sync with the other kids.

Having relationships with other autism moms is both a blessing and a curse.  Today, I cried hearing every other parent in the room talk about, in different ways, how their child talked too much, or talked about things that seem so grown-up.  My son has no friends- he wants no friends. He doesn't talk very much.  Finding out the details of his day is a bit like pulling impacted wisdom teeth as he only answers yes or no questions about the learning he has done.  Will he get to where those other kids are?  Will I get to the place my fellow moms are in- seemingly handling it all with grace?

As sleep threatens to close my eyes, it seems like a moment of grace and respite to enjoy my little boy, about to turn 12 and not so little anymore.  I will sleep peacefully tonight.