Saturday, September 24, 2011

accepting autism

I didn't sleep last night.  Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization.  No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability.  No, it's not the worst thing in the world, nor is it something which is terminal.  I totally get that many families have more challenges to live with than autism.  It's not like Andrew will die because of autism, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids.  His autism is never going to go away.

Who knows the "whys"?  I don't.  Was it the 5 day long hellish Pitocin induction?  Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention?  Or worse, allowed him to be "screened out" of EI at 16 months?  Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade?  It does not matter.

The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.)  People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is.  He absolutely is picky, but he is also a very good judge of people.  I only want to be around people who don't judge and who love him how he is- autism and all.

This is life- it's not sour-milk-complaining.  The ups-and-downs of autism dictate what our family is able to do.  Long ago, I accepted this.  My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.

I've faced my share of challenges.  I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues.  There is not a choice but to support my son and to live with the autism.  I try the best I can.  I don't expect much from others anymore as my experience is I usually ending up disappointed.   Too many people have let me down.  More importantly, too many people have let Andrew down.  I pray that God gives me the strength to love and care for my child in the best ways possible for him.

Wednesday, September 21, 2011

Happy Birthday, E!

After four shots and a physical... E started really enjoying her 11th birthday!

Her beginnings in this world were certainly dramatic.

(See below from last year):

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 Andrew 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 healthy babies score 6/8, she got a 1/8, which led to an emergency c-section (the "get your husband to the hospital NOW" kind)... 

We welcomed E Elizabeth (no, not named after Clifford's friend) at 8:37 p.m.. 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, 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 (Kim sent some before Em was born when the plan was for me to be hospitalized for a week to get her to "cook" longer), quite a few came to visit her (I have the pictures of everyone suited up in gowns to come into the NICU), and more than I know were saying prayers.  After my discharge from the hospital, my few close friends played such a special role in visiting her, even bringing me in for a visit after my own birthday dinner. Thanks, Kim, that is a night I won't ever forget.


My 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". 


Well, here we are in 2011 and this 11 year old is one of the most sensitive, spirited and bright, kids I know.  She and I have had such a fun summer together, and in many ways she is more like me than my other kids.  Happy Birthday, E, I hope all your dreams come true!

Love,
Mom

Saturday, September 10, 2011

A September 11th Blessing

10 years later

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 birthday with a small party with friends 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, M.  Once the kids were settled, we adults all sat, in shock,  and watched a Presidential Address "from a secure location" on the TV in my living room.    In retrospect, I am glad to have shared such a painful day with our then very best friends.

The day after, Julia drew a picture of what she described as a "plane crashing into a building".  I still have that picture.  The comments people made/make 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 Julia is happy and thrives and accomplishes all she wants in life.  I love you, Julia Grace.  May you have a very Happy Birthday and a year filled with many blessings and much joy.

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!

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

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 A 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.

Thursday, July 14, 2011

I hate you, now take me to the mall

Teenagers.  Autism.  Which one is more challenging? And let's not even go there- "there" being that I will have an autistic teenager under my roof in a year's time.

People keep recommending the book titled in this post.  Barnes and Noble here I come.  Teenagers are people, too.  They deserve respect.  I get that.

I am, however, a fairly newbie at the "parenting a teen gig" and my hair is quickly getting grayer by the day.  My teen seems to have the ability to control her actions, including those which annoy the crap out of me.  In contrast, my kid with autism doesn't seem to be able to control all his actions, so maybe it is a tad easier to accept those. 

This blog tends to be about the not-so-normal (like autism) parts of my life.  Now, I am probably going to be writing about what everyone goes through (and I hear survives)- raising a teenage girl without fleeing to a desert island or putting her on a plane to a similar place.  Wish me luck.  Lots of it.

Monday, July 11, 2011

A very smart nun once said...

"People are often unreasonable, illogical, and self-centered.  Forgive them anyway."
-Mother Teresa

Someone shared this with me tonight and it hit a big nerve. Beyond the obvious (obvious if you know I lived the first months of my life in Mother Theresa's orphanage in Kanpur, India), it holds meaning and advice that most of us mere mortals should recognize and follow, but don't.  Having myself been guilty of all 3 of the above at various times, I certainly hope people have forgiven me when I have behaved badly.  At some point, you have to work, and I mean work hard, to forgive if you have any hope of moving on.

People wrong each other all the time.  Families fight, couples bicker, people get into random tiffs with fellow customers at the grocery store or with a manager at a restaurant, yet we all move on and get up the next morning because we have to, not necessarily because it's always easy.  I have always had great admiration for couples who live by the mantra of never going to bed angry with one another.  As anyone I have ever been in a relationship with can attest to, I could never do that.  I could, and should, learn that skill if I am ever blessed enough to be in a safe and loving relationship again.

In a strange somewhat related twist, on an autism list I belong to, a single mom posted about her challenges with dating while parenting a fairly young child on the spectrum with intense needs, and the fact she wasn't sure her boyfriend could handle her devotion to her son (he wasn't sure, either.) Knowing many married moms are in this particular group of parents, and as a divorced, single mom,  I decided to reply, touching on my own experiences. The thoughts flowed to my fingers as they touched the keyboard, with a fair amount of tears streaming down my face. (Ask my kids, I cry at the end of every movie- I wear my emotions on my sleeves).

I dated someone who seemed to fit the bill perfectly, if the bill were to read as follows: "Single mom seeks partner who intimately understands autism and knows how to interact with a child with autism". (I wasn't seeking, but that's a whole other story).   He is the sib of a brother with pretty severe autism, now of course a grown adult, and had lived "it" his whole life, until he went off to college and then moved across the country.  But, not necessarily because of my child's autism, I had moments of being illogical, unreasonable, and self-centered in the context of the relationship.  He did, too.  Yet, he met the four criteria I required of a partner: great emotional connection/friendship, great physical connection, shared spiritual values as we had gone to church together for years, and, last but not least, acceptance of my son and his autism, but also acceptance of me as the mother of an autistic boy.  My son loved him.

Yet it is exactly the traits Mother Theresa spoke about which still, years later and not proudly on my part, at least, leave both of us bitter, angry, and still emotionally involved.  I mean that in the sense that I know he still checks up on me, reading my blog, trying to "one-up" me by making claims that aren't true, knowing my schedule and rather boring life by asking  mutual friends and acquaintances or, and this is the worst, calling names.  I still have these random moments when I remember something exceptionally good about our time together.  There are the equally random moments where a total stranger calls me asking about him because of events in his current life.  (That's happened no less than three times in the past month alone).  My kids still see his kids around where we live.  We still drive on the same main roads and pass each other.  Yet, because we act illogically, unreasonably, and are self-centered in some ways (including not being able to fully own our own mistakes, that's something I've been able to do, at least, but he hasn't), the relatively brief romantic relationship of one year, which developed after 8 years of friendship, still stings to this day.  We still seem to cause the other enormous amounts of pain.

Therefore, in responding to this mom, conflicted about how to date with a little one with autism and wondering where her loyalties should lay, I shared that, for that year, I tried to balance both, the relationship and the autism.  In the end, I failed miserably at both in different ways.  I lost someone who I was very much in love with and who I believe loved me, and I lost my way in advocating for what my son needed, at a time (remember, his parents just split up and he was now trying to figure out why mom had a boyfriend and why dad had a girlfriend and why he had two houses) that was challenging for him.  In the end, my inability to be both the partner I wanted to be, the mom I knew I could be and wanted to continue to be, the stress of raising three spirited girls, and trying to keep us in the only house my kids had ever really known, just broke me and my spirit.

I give huge kudos to those parents of children on the spectrum who have managed to stay married.  I have ginormous respect for those in particular whose marriages have remained strong, loving, and happy.  Of course, there are all of two couples, both friends who moved cross country to the West Coast, who fit this bill of all the autism parents I know well, either personally or through work.  They must have learned along the way to be reasonable, logical, child-centered, and most of all forgiving.  

That Mother Theresa was a pretty smart lady.  It blows me away to know she probably held me in her arms when I was an infant.  I will work on the forgiving piece and can only hope others work on it, too.  But, don't expect to see me on Match.com or Eharmony anytime soon.

Monday, July 4, 2011

When you can't make peace with autism

Fair warning, lots of un-PC comments ahead.

It wasn't too many years ago that I thought autism was just part of my kid and something to be embraced, just like any other "quirk".  I embraced the "neuro-diversity" movement.  This was akin to thinking that Andrew's autism was a positive gift.  Of course, this was before my kid started having violent behaviors, became completely dysregulated, and seemed to be crawling out of his own skin more often than not.

The director of a local autism resource center completely called me out when I posted some "autism is just peachy and a blessing" status update on Facebook. (The Internet- this is how autism moms connect, outside of school pick-ups and drop-offs and sitting in the waiting rooms of Speech and OT clinics).  It was a total reality check that she, mother of an adult with autism, knew so much more than I did, and she knew I was living in a deluded reality about the "gifts" of autism.

I adore my friend Susan Senator, author of Making Peace with Autism and the Autism Mom's Survival Guide.   I love that she has supported so many of us by sharing her family's experiences.  I am envious she has a supportive and loving husband who has been a partner to her in parenting their son.  But, the older Andrew gets, the less at peace I am with autism, and the more clearly illuminated the facts my life is neither particularly happy or our family balanced become.   Like 2/3rds of autism moms out there, I am single, unable to sustain a marriage or relationship while parenting a child with autism.  I thought I had found the most supportive type of partner possible- an autism sib.  He loved my kid, but more important, he understood my kid and didn't judge.  Too bad, he was unable to do either for me.  The chances of a divorced mom of 4 children with an autistic child finding love again are somewhat similar to the occurrence of flying pigs- it ain't gonna happen.

No, I haven't turned into "that mother" who puts her child on a different diet every week (although the diets seem to help *some* kids), has his body de-toxified or chelated, and gives him vitamins and supplements galore (although vitamins never hurt anyone).  I still have never played the "blame game" beyond moments of wondering what a 5 day Pitocin induction does to a baby's neurological system.  A vaccination, or 20, did not cause Andrew's autism.  What did?  Some funky mix of biology that may or may not been triggered by something in his environment is the best guess I can make.  I'm not trying to "cure" him, although I now admit if there was a proven and safe cure, I'd fight to be the first in line to procure it.

I think all autism moms are more energetic and involved with helping raise awareness when their kids are young.  I was a force to be reckoned with in the local Star Market when some grumpy old lady complained about Andrew's behavior when he was a preschooler, chastising her until she looked ashamed.  That scene repeated itself dozens of times over the years, people saying "why are you allowing your child to misbehave? He needs a good spanking" or staring.   I organized "Andrew's Team" for the Autism Speaks/NAAR Boston Walk for many years (the team raised over $35,000 in its incarnations thanks to our wonderful friends and family).

I did not want to hear the stories people with older autistic children, or acquaintances, told.  I listened to stories of an adult with autism who flicked the lights on and off repeatedly during dinner, who hid things, aggressed at his family, whose loving parents helped found an adult living community for those with autism.  I couldn't believe then that my adorable 6 year old little boy, who drew houses and towns an architect would approve of, and made the most amazing forecasts, all while having some savant-skills with calendars and math, would ever not be safe around me, or would hurt his siblings.

Then, my cute little boy grew into a strong, handsome young man.  He stopped making forts for his multitude of Build-A-Bears and sleeping on a bean bag in his Buzz Lightyear tent, using social stories with Boardmaker pictures to navigate his world and communicate his wants and needs.  He became a pre-adolescent whose sensory system (always in need of more input and welcoming of deep pressure and hugs and squooshes) went into overdrive, who screamed not because there was something pressing to communicate, but because he could not control himself.  He became a young man who lashed out at those who love him;  hitting, swearing, spitting, and even biting when he doesn't get what he wants, even when it is something I have no control over.  He complains about kids who scream at his school, yet can not make the connection that kids in our neighborhood and community look at him as the kid who screams.

Do not doubt this: I love my son and will advocate fiercely for him so long as I am taking breaths.  I will cherish the moments of connection, the snuggles he is sometimes still willing to give, and the calm that envelops him when he is engaged in preferred activities.  But, I will mourn the boy I was so convinced would "lose the diagnosis" solely with good teaching, lots of carry-over, and even more love and devotion.  Andrew is a young adult with autism spectrum disorder (PDD-NOS, Aspergers, call it whatever you want) who will need support and structure to learn, to work, and to live his entire life.  I better start channeling some of that energy from five years ago when I was raising money for autism research into creating living and vocational opportunities for kids just like Andrew.

I will have hope as Andrew starts school at Pathways Academy on Wednesday that this will be "the program" and methodology which will best meet Andrew where he is.  I'm not at peace, but I am willing to meet him halfway and try to show compassion and kindness when the neurons in his brain are not connecting and he can't do anything but scream and pace (in our house, it's called "doing laps").  It's not peace, but it is the best I can do.

Wednesday, June 22, 2011

The Graduate



It's hard to believe that seven years of elementary school (plus two years of preschool) have passed and my little boy has officially graduated from elementary school.  Groupings can be set up differently in special education schools. However, with his current K-5 school's closing (they are merging with the middle school program of the same collaborative and both will be in a new building),  there was a natural emotional closure for Andrew.

The program, which Andrew attended just this past year, is staffed by good people who do exceptional work.  However, it wasn't the right match for him.  The students there were obviously more cognitively impaired.  Andrew had exactly one friend there, and he grudgingly admits he is going to miss her.  I will miss her daily afternoon waves and Andrew-reports, too!

Andrew's new school offers a more appropriate and consistent peer group.  Hopefully, he will flourish socially and emotionally and not witness anywhere close to the level of maladaptive behaviors he did this year.  It was getting old to hear every night which kid got restrained or put in the "timeout room".  Of course, I hope and pray Andrew stabilizes in the new environment (which is pretty touchy-feely and child-centered), and he won't be the kid who needs the physical behavior management.

Happy Graduation Day, Andrew! I am so incredibly proud of all you have accomplished and love you very much.

Wednesday, May 18, 2011

Tuesday, May 10, 2011

Domesticity disaster

I'm a sucker for stuffed mushrooms.  They the first thing I order when I go out to a restaurant with them on the menu.  Could I make them? No.

Which brings me to what it is I "can" cook with talent and ease.  That list is pretty limited: meatloaf (recipe-less amazingly), roasted sweet potatoes, and green bean casserole, homemade meatballs when I have the time and patience, omelettes with lots of goodies in them, one or two kinds of chicken casseroles, grilled cheese sandwiches, and tacos. The list gets even more pathetic from here on in: English muffin pizzas, noodles I just have to boil, flavored noodles from a package, vegetables that just get steamed (most often in a microwave), frozen pizza, Perdue or Bell and Evans chicken nuggets, BLT's, and the cinnamon rolls and cookies that come out of a tube.  (On the plus side, I make awesome ketchup smiley-faces to go with the aforementioned chicken nuggets/tenders/strips).  I don't even own a spice rack and have 4 or 5 bottles of various spices in the cabinet. That's it.

Thank goodness my children are fans of fresh produce. I should grow apple and banana trees. They like to snack on cucumbers slices, Andrew would eat tomatoes by the dozen if I let him. Hummus and pita chips are a favorite, and I can wash, cut up, wrap in foil with some garlic and butter or olive oil, grilled veges like a pro.  Did I mention all my kids like salad?  Emily eats spinach leaves not under duress.

Some mothers have domestic talents.  I don't think I possess them in any area, although I find doing laundry cathartic and having an empty sink before I go to bed (thanks Andrea!) comforting.

Since I work a lot from home, I have improved my de-cluttering skills ten-fold.  Trash/recycling day is my most favorite day of the week.  My vacuum cleaner is slowly dying after just a year,  perhaps thanks to our cat and the fact half the people who come over are allergic to her, or at least her hair.

Is it too late to take those finishing school classes that teach young women how to be spectacular homemakers?  Probably 15 or 20 years too late.  Yet, my children have survived and we are overall happy. Maybe I need to buy myself a crockpot?

Sunday, May 8, 2011

Sarah's Mother's Day "newspaper" delivery


Just when you wonder if you're a good mom who is making an imprint in your child's life, he or she comes up with something like this.  Sarah wrote this all by herself, she printed it out, glued it onto this morning's Sunday Globe with Kim's help, and brought it to me with a beautiful bouquet of flowers, a sweet card, and a croissant.

Mother's Day has never been the "Hallmark Holiday" for me that it can be for others.  I don't know my birth mother, who left me at an orphanage in India.  Nor is there an relationship with the other "mother" who adopted and then abandoned me.  I am so blessed to have a few very special women in my life who have helped fill the void.  The experience of being a real part of a church family contributes to the joy of this day....  so many lovely people, so much un-judging (ie: no one seems to care that I am divorced), caring during a scary and uncertain time.

All I ever wanted was to be a mom, and a good one.   Being a mother has made me more tolerant, kinder, gentler, and more patient (a skill I was lacking in).  I learned to lean on God during the times I almost lost Julia (she was diagnosed with mitochondrial disorder as a 3 month old).  I have both leaned on God and been very angry at Her during the ups ad downs of raising a child with Autism.  I was so angry with Her when I mourned for the child I lost nearly 4 years ago, almost alone.    I have no idea what God's plan may be for my life and what other journeys She sees me embarking upon.  Whatever they are, I will never lose sight of the fact that my children are more important than anything else.  The village they belong to loves them and Sarah's letter tells me I must be doing *something* right.

Happy Mother's Day!

Sunday, May 1, 2011

Horn Pond and The Red Sox

With church in-between the two, we had a very busy day.  The Red Sox game was a surprise, and I am grateful for the tickets.  By some miracle, we found free on-street parking.  In a nail-biter, the Sox prevailed over the Mariners.  It was the kids' first Red Sox game and we had a blast, albeit the cool temperatures.  Days which are perfect in almost every way don't happen often, but, when they do, they cleanse my soul.





Friday, April 29, 2011

Yes, it actually does take a village to raise a child

Amy Poehler's speech, thanking Time magazine for naming her one of the year's top 100 most influential people, starts out funny and quickly gets serious:

But tonight, I’m genuinely very humbled and honored to be part of this evening, so I would like to take my remaining minute to um … I have thought very hard and long about what has influenced me over the past couple of years, and since I have been at this dinner in 2008, I have given birth to two boys and I’ve left Saturday Night Live and I started my own TV show, and it’s been a crazy couple of years, and I thought who besides Madam Secretary Clinton and Lorne Michaels have influenced me? And it was the women who helped me take care of my children. It is Jackie Johnson from Trinidad and it is Dawa Chodon from Tibet, who come to my house and help me raise my children. And for you working women who are out there tonight who get to do what you get to do because there are wonderful people who help you at home, I would like to take a moment to thank those people, some of whom are watching their children right now, while you’re at this event. Those are people who love your children as much as you do, and who inspire them and influence them and on behalf of every sister and mother and person who stands in your kitchen and helps you love your child, I say thank you and I celebrate you tonight.

I love seeing a successful woman, particularly a celebrity, acknowledging and thanking the people who help her look after her children. More women need to do this. More men need to do this.

(via Crooked House)

Saturday, April 23, 2011

Happy Birthday, S

We're celebrating Miss S's birthday today!  My "baby" is 9 years old, only one year away from double-digits.

S is a unique, wonderful mix of funny, vibrant, intense, & joyful. She has created the most unique dance that we have dubbed "the Sarah dance".  Being keenly aware that she is indeed #4, Sarah fights for attention without apology. She makes everyone around her laugh.  She also gives 110% to everything-- and is fighting like crazy to overcome some challenges in writing and reading. By far the most imaginative of my kids, she stretches this creativity to make the most funky and neat projects and creations.

I know she hurts sometimes and wishes for her family to be whole.  However, she has a lot of love from me (and from her dad).  There are many special friends in her life who love her.  Maybe it's the bond of having nursed her for so long (ok, well long for my babies, I consider 7 months a *really* long time), but she and I share a very special connection, too.

I know I have the option of having another baby, but today I just want to think about Little Miss S and remember that the day she was born was one of the happiest days of my life (ok, minus the lack of an immediate post-delivery morphine drip at MAH).  Sharing her birth day with my dear friend that evening in person, and with others on the phone, are all fond memories.   She brings so much love and light into our family's world, I can't imagine my life without her in it.   Happy 9th Birthday, S.

(Cut and pasted from last year's birthday post)

Thursday, April 21, 2011

Just some bowling-- putting autism in its place

Today, Andrew bowled a strike.  It was with bumpers in place and with a candlepin ball, but it made him so very happy. Truthfully,  I have never bowled a strike so I am impressed :-)

Earlier this week, Andrew asked why his big sister refused to forgive him after he apologized to her for invading her privacy.  He is learning what empathy is. At age 11.5, living with autism, he is meeting the social and emotional milestones of a child much younger. And I couldn't be more proud of him.

I remember the day he first said "I love you" back to me like it was yesterday.  He was 5.  I was tucking him into his top bunk bed and said, as I did every day, "I love you Andrew".  His little voice said "I love you Mommy".  It's cliche, I was so happy to hear those three little words from him for the first time, I cried after I left the room. I was both amazed and humbled by the power of his words, after years of speech therapy and the methodical teaching we know works best for children with autism.

As I look at this boy/young man, I feel blessed to be his mom.  I feel in both ways angry at and bad for his autism.  We play the "two steps forward, one step back" game, always have and always will.  Do I love him in a different way than I love my daughters? Truthfully, yes. Do I worry about him and what his future will hold more? Yes.  Am I forever grateful he has three sisters who I trust will always be there to help him reach his goals far into the future when I can no longer care for him? Yes, he may drive them crazy at times, but they are fiercely protective of their brother.

Today, bowling made Andrew happy and he felt successful. Taking it one day at a time is all we can do when the "enemy" (the A word is what Sarah calls it) is so powerful and takes hold at erratic times and makes things so damn hard for him, and for our family.  So, we carry on and celebrate the small victories.  Every night before bed I tell him, "I love you, Andrew".  His response: "I love you, Mom".  That is a gift I hold close to my heart.

Sunday, April 10, 2011

A special weekend with a special girl

This whirlwind weekend ended with a very special (and incredibly rare) Mom and Sarah day.  When you have four children, time alone with any of them is precious, but Sarah is probably the one kid who really needs the 1:1 attention, extra love, and hugs.

We started the day with a lovely walk around Horn Pond. I pushed strollers with all my kids in them around the Pond, dozens if not hundreds of times. Sarah and I talked about the memories she had as a toddler and preschooler of the pond: the ducks, the rock that looks like a big chair that I have dozens of pictures of the kids and their friends sitting on throughout the years.  There is a lion sculpture Sarah used to like to climb on.  No longer does she climb it, but she wanted to go see it.  Sadly, the statue of an Indian where the path goes into the woods was stolen a while back, but where it stood is some hilly terrain which Sarah wanted to climb and walk parallel to the paved path.  My friend Carol ran by and said hello there, reminding me of one the the reasons I most love Horn Pond, seeing old friends. There is never a trip, except for the rare early morning one, where I don't run into someone I know and like.

As we approached the halfway point, one of the trails veered off to the right towards the path to the top of Horn Pond Mountain. The kids and I have climbed that hill dozens of times, but there are lots of memories there, not all good, so we managed to keep walking around the Pond, checking out the ducks and swans. (And, come on, who the heck named it Horn Pond Mountain? It's a little hill).

Sarah felt accomplished after we finished our walk.  We decided to take advantage of our small party size and head to Tu Y Yo, our most favorite brunch locale.  We talked, we laughed, and we enjoyed some really yummy food (chilaquiles, sopes, and flautas).  She confided her fears, her hopes, and her dreams, and I shared some of mine as well.

The only bump in the road of the day was that our appointment to get our nails done was a small catastrophe.  No matter what time you book, they are never on time, and today they really weren't good to Sarah (typically, they are great to kids).  The only upside of the experience was running into an old friend from high school (ironically, this was the second time I had seen her in 15 years, both times at this nail salon), and catching up.

When it was time for our time to be over (shared custody can be a bitch), there were lots of tears from my baby girl, about to turn 9 on April 23rd.  In turn, my eyes watered a bit, too.  I can hardly believe it has been nearly a decade since I gave birth to this amazing little girl who is full of spunk and has enough personality to star in a variety show.  I am very blessed to have had this time with her (which came a day after a small, but super-fun birthday party playing laser tag).

I love you, Sarah Johanna.

Saturday, April 9, 2011

Happy Birthday Party S

We had a fabulous, small birthday celebration with two friends from church in honor of S's 9th birthday at Laser Craze. As much fun was had by the adults as the kids and all my daughters had a blast. We are fortunate to have a small group of wonderful friends and seeing Sarah so happy makes my heart smile.


S struggles mightily with self-confidence and seeing her so alive was enough to remind me that all the special times and events she gets to be a part of help her self-esteem. School is not going well for her, she is just a sponge for attention.

Having Andrew not there was a relief, as much as it breaks my heart a little to know all the kids can't
celebrate together.  (He had a great time at the zoo.)


All in all, what a lovely day!