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

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.

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.

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.

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.

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.

New pictures (Andrew)

Thank you Kristin Chalmers for your awesome pictures!

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?

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!

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.

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)

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)

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.

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.

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!

Sunday fun: "Christmas and Cookies"

We had a fabulous day with our dear friends, hanging out, sharing a meal, baking and decorating cookies, and just spending some precious time together. It's rare to get all of us in the same place and these friends mean the world to me.  They have been there through the good, the bad, the ugly, and now the good again.  I am blessed to not have to look too far to find friends who are not of the fair-weather variety and who support and love me and my children. 

Taking a break from "Just Dance" on the Wii

Leila and her big friend Sarah, both pretty in pink

Wanda was taking the picture... and Julia and Andrew were MIA.

Target on a Saturday and other musings...

Standing in line at Target on a Saturday afternoon may be a tradition as American as apple pie.  The girls were behaving and all was pleasant. That is, until the moronic woman in front of us decided she needed to start going through her bulging envelope of coupons instead of putting her items on the conveyor belt.  She only had 15 minutes of waiting beforehand to get her things in order, but, no, she refused to start checking out until she pulled out 8 coupons.  By then, both the cashier and I asked her to please move on. And she yelled at both of us.

The intended purpose of the trip was to return a defective iPad we had bought a few weeks ago. With my limited energy getting ready for surgery on Thursday, perhaps we could have found 100 other less taxing things to do on a Saturday afternoon.

I had gone skiing the other day. It was fun- until my entire midsection started screaming with pain. I will be happy to get this nerve blocker implanted and be more comfortable.

The children are being, well, typical siblings. They love each other one moment and hate each other the next, with a whole lot more hating than loving nowadays.  Andrew has become re-obsessed with one of his Build a Bears and is driving everyone nuts with it.  Emily has entered teenagedom a few years too early.  Sarah is frustrated by all that's going on. And, Julia, is, well, Julia.

We are looking forward to seeing our best friends and having our annual post-Christmas dinner and cookie making marathon.  Here's to some wonderful memories being made today.

Winter thoughts redux

This evening, as I moved my car to prepare for the impending blizzard, I was struck by how it actually feels like snow is in the air.  My son and his babysitter took a trip to Build A Bear Workshop where he created "Colorful Bear" (bear #40ish).  I had stocked up on Dan Dan noodles early this afternoon, driving 15 miles to get them. Chili sauce, plain rice noodles, sichuan pickles, and a small amount of ground pork= heaven.  There is a Red Box close to my house and "The Social Network" was available so that's my exciting activity for the night.  It seems an ironic movie to be watching given recent events.  Facebook, emails, blogging... they are something we all partake in.  My teenager has introduced me to a few other social networking sites, and I am far too old and uncool to know what MySpace offers.

I think about the reality of things I have experienced in my life, especially over the past five years.  I was there, my memory is not impaired from remembering the good, the bad, and the downright ugly.  Today, my family is pretty close to intact, my friends are amazing, the support system for our children is strong.  As added bonuses, there have been victories for clients at work in recent days.

My "terrible, horrible, no good, very bad day" moment came when reading for the first time Andrew's neuropyschological evaluation.  It unsettled me and left me sobbing.  For years,  I thought my kid might have been one of the few to "lose the (autism) diagnosis".  Alas, that is not to be.  It's a given that testing is hard for him and he doesn't perform well, but scoring under the 1st percentile on most testing tools shocked even me.  Autism sucks.  However,  now the adults can try to figure out what it is he needs to be a successful learner.

Tomorrow, the Christmas tree will come down as we find things to amuse ourselves with during the snowstorm.  I'll go skiing in the Fells with friends when the baby-sitter comes in the afternoon, and a new beginning will be had.   I will hold my little boy tight tonight, gently stroke my cat while she sits here on my lap, and take in the beautiful scent of the burning "Fresh Balsam" candle.   Life is good and I am indeed blessed.  Lynda, Whitey, and perhaps my cousin Denise (who left this world far too early two years ago today) were watching out for me today.

It has been a certifiably awful few weeks. The stress has taunted me, daring me to fall apart. By giving into that depression, it would make my family disintegrate, my autistic son's world turned upside down.  It amazes me that anyone would knowingly contribute to the sadness and confusion of a little boy who lives every day with autism, working so hard to fit into a neuro-typical world, by hurting the most important person in the world to him- his mom.  I am so grateful to those people who have supported my little family and who know the truth, have known it for years as they lived it alongside me and my kids, even if it is ugly.  Domestic violence is rarely pretty.  I didn't do a good job listening to my friends for a long time; now I know better. I love you all.

]

My teenager.

A visit to Channel 7

Andrew and his friend Emma had a fabulous time visiting Channel 7 (WHDH-TV), hanging out with Andrew's meteorologist buddy Jeremy Reiner, and talking to Dylan Dreyer, Adam Williams, Anne Allred, and Steve Cooper. (To show my age, I was excited to see Andy Hiller, the long-time political reporter). 

Everyone was wonderful to the kids, and it was definitely the experience of a lifetime! 

Do we listen to autism?

As parents, it's our job to listen to our kids. We don't always have to agree with what they say, but we have a responsibility to hear them out.  Today, Andrew's autism got the better of him and I tried to keep pushing him. In all my attempts to calm him, or make him re-focus, in the end, he ended up having a major tantrum and crying.  When I was tucking him into bed, he was able to verbalize that he was sorry and said "I had a bad day, Mom, I was just tired". The tears came as soon as I turned off the light and walked out, my head spinning wondering why I did such a poor job respecting the communication he was attempting to have with me.

Autism doesn't reason well.  Things are very black and white.  Things either make sense to a kid, or they don't.  Because of this rigidity, he misses out on so much.  Even things he likes, like the Wii, he has meltdowns over if he doesn't do as well as he'd like, or if his Wii "me" doesn't look perfect. It's very sad to witness.

I think about all the missed weeks and evenings when I should have been supporting him and have been more present.  Instead, I had entered the dating world.  Would it have made a difference? I have no idea.  What I do know is this all feels helpless sometimes and autism for my boy-man is more challenging than ever.