Thursday, December 23, 2010

All I want for Christmas is...

Andrew sits in our office, trying to figure out if he actually likes the new iPad (and all its really cool apps). He was so happy to get out of school early today and begin his vacation.  He was in sensory overload with all his classmates and their parents crammed into the small gym of his equally small special education school.  (Admission: I was in sensory overload, too).   My girls, of course, are equally thrilled with school vacation and a visit from their grandparents.

I, on the other hand, feel a bit lost in the hubbub of the holiday season.  The gifts I have for the children are small:  I am not the parent with money.  As I bought the M&M's and Hershey Kisses that will go into their Christmas stockings, I thought of the Christmases when my family was whole. The Christmas Eve services, Julia dressed as an angel for the pageant, friends to share the holiday with, our children playing and the adults enjoying good food and good company. I think of last year, spending Christmas Eve with a dear friend and her husband's family, feeling included yet still not really belonging.  This year, at my suggestion, because they get to see their out-of-state grandparents so infrequently, I agreed that their dad keep the children Christmas Eve and all day Christmas. I had made grand plans to go skiing with other single mom friends.  And, then,  it hit me like a ton of bricks. I just want to be with my kids. (At this rate, Andrew wants nothing to do with his dad or grandparents, so at least I'll have 25% of my kids).  Since our newly restored "getting along" would probably just confuse said people, it's all good.

Christmas is about family.  I have given up thinking it's about a tiny baby, born in a stable, to a virgin mother and a carpenter father, where sheep lie and where wise men visit.  The pain of not having a church tugs at my heart. The past four years have been a roller coaster of emotion, and things are finally as close to "right" as they have been with my children.  Yet, my sense of self is not at peace. I'm sad. Five years ago,we celebrated the last "normal" Christmas as a family who hadn't yet been affected by divorce.  My son doesn't care about presents, or stockings, or Christmas itself. Autism has robbed him of that.  What he is is an amazing little boy, or perhaps boy-man, who makes me smile, gives me hugs, and occasionally starts his day by saying, as he did yesterday, "I just wanted to tell you that I love you".  (The day ended awful, not even my Mom's Group annual dinner and Yankee Swap at Jade Garden could redeem it).  Andrew and I play, we laugh, we cuddle, we run errands... He has replaced Maddie-the-cat as my best buddy.

Thanks only to my amazing friends who are kind and tell the truth, I am here. Wrapping presents and getting ready for this holiday.  I was born in the slums of India, and left in front of the door of Mother Teresa's orphanage. This must have been for a reason.  Early stage breast cancer and subsequent lumpectomy and radiation must have also happened for a reason.  Maybe it's so I can be the parent that Andrew loves and accepts.  Autism has taken so much from him, but not his affection or his love.

I wish all a very Merry Christmas and a new year filled with peace, joy, good health, and much love. I hope we are lucky enough to be gifted with peace, as well.

Thursday, December 16, 2010

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! 

Thursday, December 2, 2010

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.

Thursday, November 25, 2010

Blessings

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

Happy Thanksgiving from our family to yours!

Wednesday, November 17, 2010

What is the face of autism?







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

Sunday, November 14, 2010

Giving thanks

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

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

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

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

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

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

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

-Peace, love, and chocolate

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


What are you thankful for?

Tuesday, November 9, 2010

An exciting weather day


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

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

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

Sunday, November 7, 2010

Fall ... over too fast

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

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

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

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

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

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

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

Tuesday, November 2, 2010

Too mad at autism to meet halfway

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

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

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

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

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

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

Monday, November 1, 2010

Meeting autism halfway

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

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

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

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

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

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

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

Sunday, October 31, 2010

Saturday antics

After a morning grocery run to Market Basket (my version of hell), we ventured into H Mart today for the first time.  Not sure what to expect: I had heard it called a "nirvana". We saw long lines for coffee and pastries, a few food court-like places (not opened, but the Indian place looked pricey, a toy store, and more.) Well, the more was more kinds of food (ie: kimchee, fish, etc.) than I could make any sense of.   I am culinarily-challenged. If I go back there ever (prospects aren't looking good right now) I must bring real Asian people who know what they are doing and buying there.  I, despite looks, am an outsider.

The kids played outside, I got some client work done, but at least two of us were feeling under the weather.  All the spicy Indian food (from the Indian Grocery in Woburn Center) was enjoyed and I curled up reading "Mirrorball Man", written by my half-brother, Joel Brown.  This shows you the level of dysfunction in my family. My brother is writing a book and I had no idea.  I paid for mine, via Amazon, as did everyone else. Family drama aside...   It's a good read. Buy a copy.

This brings me to Halloween. I hate Halloween.  It used to be cute when the kids were younger.  Now, when my ex-husband asked me if he could bring the 8 and 10 years olds trick or treating, I gleefully said "yes, what time do you want them?".  Over the past decade+ I trick or treated on too many rainy, cold nights than I can count.  Andrew and  I want to hand out candy here at home. Maybe we'll try to knock on a few doors and do the "trick or treat" social story strip we've done for 8 years.   Julia was invited by a friend's mom to spend Halloween with her Ottoson classmate.  So, the Halloween logistics are made. Did I mention I am NOT dressing up?

What was left unsaid, a big so far, is that Halloween was my wedding anniversary. Twelve years later that is still very difficult to own.  95 people witnessed us say "I do" forever.  Splitting our family into two pieces hasn't gone very well for either adult, and certainly not for the children. It's all very sad to think of kids trick or treating at our wedding reception (although they were all so cute!).

Here's to a year of peace.

Tuesday, October 26, 2010

Dreams

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

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

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

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

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

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

Monday, October 18, 2010

Pure joy

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


More pictures can be found here.

Thursday, October 14, 2010

Practicing Kindness

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

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

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

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

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

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

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

Monday, October 11, 2010

(Not) playing with poop: a joy of autism

Is it a good thing that my kiddo with autism pooped in the shower and knew enough to pick up the offending poop-ball and put it in the toilet with his hands ? I was shocked when he told me and sent him back to wash his hands for 2 minutes with lots of soap and really hot water.  However, I was secretly thrilled that he knew that poop goes in the toilet and that when it originally went somewhere else, he tried to solve the problem.

Andrew wasn't toilet trained for BM's till he was over 6, so it's been a long road, and there are still accidents. Overall, it's much better, despite the major constipation the poor kid suffers from.

My "favorite" poop story is pretty funny when I think about it. We were at Robbins Farm Park in Arlington and Andrew was still in pull-ups, probably 6.  We ran into his friend K from music therapy class and her PCA.  While the woman and I were talking, Andrew, pulled his pants down, pulled the pull-up down, and proceeded to leave a nice gift on the sand near the wooden vehicles.  Not having a dog, I didn't have plastic bags with me, and believe me there were lots of horrified mothers and nannies staring by this point (I admit to probably saying, loudly, something I won't repeat)... I gathered up what I could with the wipes in the diaper bag, and soon thereafter fled the playground with Andrew, and his annoyed sisters in tow.  You see, they were having too much fun going down the slide that is built into the hill over and over and over and over again.

Yet, tonight was progress, right? Someone tell me it was. Please.

PS I'm an autism mom. Sometimes, this is the stuff I write about. Sometimes autism is gross.

Sunday, October 10, 2010

Need a photographer for your kids, with or without special needs?




I can't say enough thank yous to Kristin Chalmers Photography for taking this "so good, it looks nothing like me" press head shot.  In addition, she shot the girls (Andrew will come later). So talented, so personable, and highly recommended to autism moms and everyone else, alike.

See more of my kids at: http://picasaweb.google.com/laurel930/KristinChalmersPhotoShoot?feat=directlink

The downside of the day was I lost my eyeglasses. I don't wear contacts so this is really annoying!  Ordered 2 more pairs- one really cool.  I am determined to stay looking young!

Saturday, October 9, 2010

Staying busy and moving forward

All of a sudden, I got *really* busy with work.  Families all over Arlington and Medford are retaining me left and right. (Yes, I am taking great care to take cases where there are no conflicts of interests.)  It's great to have a good reputation as an advocate and seeing how social media (ie: Linked In) is working to further my practice.   Maybe I won't be broke forever!

All the above is all very good because Columbus Day weekend is a hard few days for me.  No matter how "over" the past you can get, there are just some experiences and days that you have a hard time forgetting good things. That would be this weekend for me.  Being at a lake in the moonlight in Vermont was one of the best experiences of my life. It's over- life goes on-- we all move forward, the memories are wonderful. But, they are also bittersweet.

Keeping busy with work (I was up before 5 am working on cases) and my family (and helping a friend through her own "hubby is a big jerk" crisis)  is making the weekend flow.  The girls and I have stayed busy, doing stuff outdoors and shopping. Andrew has stayed busy with his PCA.  We are all getting ready to get some professional pictures taken by a fellow autism mom tomorrow afternoon.  Em and Sarah got dresses/matching leggings from Hanna Anderson, BUT neither are thrilled by the outfits.  I admit I was the mom who matched the kids in Gymboree outfits for years. They are now all too big for Gymboree, have their own fashion sense, and I also have a teenager with her own very unique style.  I just want everyone to be somewhat coordinated.

I got a great outfit from J Jill thanks to a birthday giftcard and bought not one but two sets of big jewelry to match it.  I hated them both when I tried them on. My tastes tend to run towards simple and classic accessories, not "bling-y".  This is much to the disappointment of my daughters.

Back to work now that the kids are asleep. Who needs sleep? Not me.

Wednesday, September 29, 2010

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

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

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

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

I lost God, but found happiness and peace elsewhere.

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

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

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

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

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

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

Wednesday, September 22, 2010

Sleep

Ever have a day which for a multitude of reasons just started great and went downhill to the point that bed was a welcome, inviting place and the only place you could cope with being? That was me last night. Every bit of emotional energy and strength (not to mention physical energy after 1.5 hours at the gym earlier in the day and a long walk in the evening) was used and I just wanted to sleep.  Someone forgot to tell my brain that because 3 hours of sleep later, I was awake and half-watching Parenthood on the DVR.  Conveniently, this episode was about the break-up of the marriage of a set of autism parents, where dad is complaining mom is so involved with getting the kid to therapies and dealing with school and IEP's, etc., she doesn't pay attention to him or their marriage. Hmmm-- smacks of some reality.

I love fall, the milder weather, the pretty leaves, the fact it is easy to get out and exercise and take long walks without sweating... I hate the heat and humidity of summer. Yet summer is returning for a few days and that makes me nuts.  My kid is thrilled about the weather, the budding meteorologist loves the sun and warmth of summer weather :-)

Perhaps a shower and a whole lot of  coffee will make the day better. I have to  break the news to A that his beloved baby-sitter completely bailed on us after getting a better paying gig. With no notice.  Poor kid. I think he and mom are going on a work around the Pond before school...

Monday, September 20, 2010

4 pounds to 10 years

It's hard to believe 10 years ago, I was 32.5 weeks pregnant, getting dinner ready and putting kids to bed, having made plans to drop off 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 babies are supposed to score 6/8, she got a 1/8, which led to an emergency c-section... 

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

Emily 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, quite a few came to visit her (have the pictures of everyone suited up in gowns to come into the NICU), and more than I know were saying prayers.  



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

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

Wednesday, September 15, 2010

Joy

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

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

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

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

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

Saturday, September 11, 2010

A September 11th blessing

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

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

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

Friday, September 10, 2010

Life is good, no GREAT

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

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

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

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

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

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

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

Tuesday, September 7, 2010

Friends

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

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


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

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

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

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


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

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

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


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

Saturday, September 4, 2010

Red tape that goes on and on and on

After 5 days of trying to pull rabbits out of hats and access everything my little guy needs, we've got little to show for it.  A perhaps bitter former school system blatantly refuses to turn over his records to the new district. This is a big pain-in-the-neck.  After numerous faxed consents and sending them the testing and paperwork I do have, the new town won't even schedule a team meeting.  School starts mid next week.  They, W for the purpose of this blog,  are understandably annoyed with the old district which we'll call A.  I don't really care how A and W work things out, either with financial or programmatic responsibility. They need to play nicely with each other in the sandbox.  I do care about my son and the fact that each day that passes brings an increase in his  anxiety.  He just wants to know where he is going to school. Kids with autism thrive on routine and structure. Unknowns tend to produce stress and increase behaviors. (Does me crying count?)

With no school program, there is "School of Mom" 24/7 .  It is run with love and a good deal of care and planning, but I am not a behaviorist.  The interactive book pictured about worrying is one of Andrew's favorites. He first filled it out when he was 5 or 6.  I have Boardmaker and lots of PECS, but I have no idea how to devise an entire behavioral program by myself. I am trying to keep things structured and expectations clear, quiet voice (ie :no screaming), good hands and good feet (ie: no hitting or kicking).  I use rewards when indicated and he responds to them.  I even have deigned to call the old pediatrician who acted so badly for so long when my kids needed support from him, maybe he'll now feel moved to help Andrew.

I am desperately trying to keep my own sped practice off of life-support so I can feed my family and keep a roof over our heads.  Some work for clients has gotten done, but I am too busy worrying about whether Andrew's face is going to "freeze" again, if his muscles will cause him agonizing pain, or if he will hit his sister again, that I am not 100% focused on work.  It is nearly impossible to get to team meetings for clients in these all-important first few weeks of school.

I adore my son and am so thankful he is with me.  I am a nice person.  However, I have had it with the school and respite/behavioral domains which are still "works in progress" to try to get services in place for him.  Thank God for the DDS and the small amount of flexible funding we've been able to use for respite.  I respect the folks who are trying to help us, am wary of some services provided by agencies which don't know much about autism however nice the providers. (Look up the Children's Behavioral Health Initiative and try to understand it- I can't).  I just want to get back to where we were.  I want Andrew to regain the skills he once had, I want him to smile, and I want him to learn. I don't have any money for pricey independent evals and I can't even pay an advocate.  It sucks to be poor, but I won't complain about it since we have shelter, food to eat, and are safe in our home.

Am I really asking for too much?  This happiness stuff gets interrupted by reality pretty often, doesn't it?  In case I haven't said it, I am so touched by all the love and support from so many friends, co-workers, and clients, even.  This is one of those moments I wish I could get into a time machine and go back to 2006, and have two married parents dealing with this stuff together.  Despite that fantasy, I am glad Andrew's dad has partnered with me to try to get this stuff fixed.  We do appear to be getting along better than we have in years. Can two parents get stubborn systems working? To be continued...

Wednesday, September 1, 2010

Technology and connections

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

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

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

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

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

Tuesday, August 31, 2010

The great hunt

If you have a child with special learning needs who has needed a new placement, you know that advocating for the right school can give well-meaning parents ulcers. Mom and dad who just want the best for their kids are drawn into a confusing and time-consuming process.  It's a tiring process for anyone, and somehow my special education background is not making it any easier for me.  I can go to bat for a client and help them obtain an incredible program (like I did yesterday in Medford), write IEP rejection letters which appropriately quote the law and make salient arguments for other people's kids. Yet, for mine, the words don't come so easily.  Picture me tongue-tied and quiet- not quite the typical picture.  

The needs are not clear-cut to either my mom or advocate brain, although thank God for my advocate friends who are providing a lot of support.  My professional friends are offering their services knowing full well I can't afford $3K for an assessment that Andrew really needs.  We do this for each other because to work in this field, you have to be compassionate and giving.  That's why the work suits me so well, I like helping people, and it's just a bonus to get paid for it.   I do more probono or reduced rate work than I should, but I don't say no to helping people.

Autism is such a loaded word.  Every child is unique, and there are many schools and programs out there which  claim to cater to autism. But, which one is the best fit for my child's autism? The child who, during an interview today, said he isn't sure if he likes himself, he's not sure if things will work out  for him, he wishes he has more friends, and that he feels like crying most days.  It's heart-breaking to hear how different he feels, when I worked so hard when he was younger to try to make him fit in, have friends, and be successful in school.  Yet, autism is so cruel, and he has lost so many of those previously learned, and I thought somewhat solid, skills.

I don't feel like this is a fight with the school, there's no clearly drawn corners.  I have a fair amount of trust that our district will really try to meet my son where he is.  There is some perhaps grudging respect from both sides which will only serve to benefit my kid. Now that, my fellow autism parents, is an enviable position to be in.  I don't have a fight in me because I have faith he will get what he needs.  Hopefully, the district is willing to collaborate and do the right thing. I just don't think either they or I know quite what that is yet...

Sunday, August 29, 2010

No answers

There are no answers to what has been plaguing my son. Just a simple "talk to the doctor about the med" and advice to cut the dose in half for now. No explanation other than "these kinds of meds" can have weird and detrimental side effects. Having him on these types of medication to begin with makes my head spin.

I am so proud of my son. Never would I have imagined that he could withstand an EEG, fully awake and aware. Yet he did, with flying colors. Never did I think he would do a lot of what he's been able to do recently.  It's amazing, and a gift, that he can tell us what hurts, or what feels "off".  The things that feel "off" make me really angry.

This all just leads me to really hate autism. What a cruel disease. This young man, who has so much good in front of him, is being held captive by a developmental disorder that is so unforgiving.  Tonight, at Trader Joe's, Andrew wanted to buy me flowers. He calls me his "pretty, beautiful, and gorgeous" mom (probably got the adjectives off a  TV show). He talked about the foods we would buy and cook this week. He hugged and kissed his big sister.  He spoke of how the muscles in his face hurt, too. Just now, he awoke upset because he said his face was in pain. These medications, which are supposed to help kids with autism and related issues, just seem to cause more complications.

I love Andrew's quirks- his love for bears and calendars and numbers.  But, I hate this disorder which has robbed him of being a normal kid. He doesn't have friends.  We didn't have a birthday party for him because he was in the hospital, but truly, no one would have come anyways.  My dear friends love him because he is part of me, but he's not some "Temple Grandin wanna-be". He's a little boy who is trapped by his autism and it makes me angry.  He has so much potential. I just want to see it unlocked.

The feelings too shall pass and tomorrow we'll start finding the right school for him. Right now, though, it feels lonely and sad to a  mom who just wants the best for her son.  I know my autism-world friends may not understand, but where is the key out of this prison? Autism sucks. The quirks were maybe cute when he was little, but he's not anymore and is physically already more a man than a boy.  I write this while watching the Temple Grandin movie win lots of Emmys. I hope and dream that my son will too have a decent job, be able to make a living, and have others respect him.  Mostly, I want my little boy to be happy.

Tuesday, August 24, 2010

Do you believe in angels?

My son lays peacefully sleeping next to me as I write this. Do you remember the moments, soon after you've brought your newborn home from the hospital, when you just watch him sleep? When you are completely in awe of the fact this tiny person is not only part of you, but your responsibility for the next 18 years?  I used to stare at my babies while they slept, usually in my arms, and think of all the opportunities they would have and just how beautiful they were.

That's kind of how I feel about my little guy right now.  I am in awe of who he is, who he will become, and cognizant of the paths he has taken before.  I sit here, next to him and a cadre of his beloved stuffed bears, and make mental lists of all the tasks on the Andrew "to do" list.  He needs a school, a home program, a dentist, and, tomorrow, a haircut.  Thanks to the crazy world of autism, we're calling it a "snip" so as not to bring the anxiety that haircuts usually bring out.

For the past few years, I had a lot of time to think about who I was, not Andrew's mom, just who Laurel was and who I wanted to be.  I thought perhaps that I deserved some sort of adult happiness that apparently comes along with living a well-settled and happy life as an adult parent, more or less one of four amazing children.  Other people (married and divorced friends, alike) I know seem to have this...  friends, faiths, their own activities which kept them happy apart from parenthood.  Yet, I wasn't one of them. I thought I was for a while, balancing my family with dating, creating a bubble, and not seeing what was right in front of me.  

Therefore, I've determined that I'm just not going to be one of "those people" who can have it all. And that's ok.  I've been married, been in love, done many of the things on my "to-do" list, have amazing friends, and am slowly building up a faith in something (maybe not God) greater than us.  If there was a God, the one I believed in so steadfastly for the first 3 decades of my life, the wonderful people in my life who have passed on would still be here, my family would not have been torn apart, and I never would have made a fateful decision sometime in early May years ago to follow my heart and not my head.  I don't want it all anymore. I just want to be a mom and forget any other aspirations of life- juggling that may once of been in my mind.  I don't think everyone can have it all.

What I do think exists are guardian angels.  There has got to be someone up there, wherever *there* is, who is guiding me, who has done so with care, especially in recent months.  It's a bit mind-boggling to be in the position I'm now in.  It was not a gift, though-  I earned it.  The path ahead is going to be hard.  It's not like autism was supposed to be easy, and maybe I deluded myself for years to think my child was so mildly affected he was going to do all the things "normal" kids do, with some quirks popping up along the way.  Alas, the path has some roadblocks strategically placed in the middle of it. But, there is nothing that we can't overcome, with grace and peace guiding decisions.  There will be days and moments I know will not be fun- the times autism will dwarf any feelings of normalcy. We'll get through them.

I think of my dear friend Lynda, up in Heaven where I am certain she is, holding Andrew in her arms the day he got baptized. I have pictures of her with all the kids going as far back as when my oldest with in-utero, along with the memories of the love she showed to me and my family. Even when Lynda was very sick, she made the effort to gift a well-loved cat-themed birthday treat to my daughter, because that's the kind of person she was.  I think she's looking down on Andrew, and me, and and protecting him and guiding me as I nurture and love him.  In reality, she is one of the people who taught me how to do these things, and I hope I will make her very proud.

Saturday, August 14, 2010

A letter to my son

Dear Andrew,

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

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

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

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

Love always,
Mom

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

Wednesday, August 11, 2010

Finding some grace

The IEP meeting has come and gone. Many a conversation with people who are important to my family have been had. A fabulous visit with my daughter that included Mexican food and Chilly Cow ice cream was accomplished. All which leaves my head spinning in some ways, but also leaves me with a sense of enormous peace.  I was told today by someone who is important that they believe in second chances.  I will hold onto that as I live my life and take care of my family.  The comment put tears in my eyes. I'm a realist, I own what I need to, but I've come to peace with some other things. I may never be able to come to peace with others, much to my regret.

I might want to start re-building that relationship with God right about now because I think I will be asking Her for grace and guidance over the next few weeks. God doesn't hold grudges, and She doesn't consider you un-Christian and worthless if you don't go to church regularly every week.  It's about time I start figuring out how to re-build a spiritual presence in my life.

Sunday, August 8, 2010

A weekend in the Berkshires

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

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

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

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

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

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

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

Wednesday, August 4, 2010

in slow motion

I am so blessed. I have good friends, kids who I love to pieces, a job where I get to help kids with autism and special needs, a truce with God if not a bond, and an outlook on life filled with hope.

Then a day like today happens and I am painfully reminded of the fact there are things in my life beyond my control. I feel like I have been watching a trainwreck happen in slow motion, possibly for three years.  Or maybe it's the past two weeks which has been the worst to watch. My family is being torn apart- again- and all I can do is sit back and watch.  It's reminiscent of another train wreck. This time in a bedroom where a family was ripped apart by a man covering his wife's face with a pillow while squeezing her neck with his hands while their children watched.

There is always another option when one is overwhelmed.  It's about the choices we make. The support system we cement in place. And sometimes we don't always choose correctly. I'm reminded of that every day. Three years ago, I chose someone who I thought loved me, who I did love with all my heart, who my children loved.  He left me and hurt my heart in a way I didn't deserve. Glimmers of a burnt orange polo shirt or a rock by a lake still haunt me. And because I chose him, I lost so much else.

Today, I am choosing to open my heart to the possibility that grace happens.  I am strong enough and wise enough to do whatever is needed to help clean up the train wreck, even if I didn't cause it.  The passengers don't care who is at fault, they just deserve to be loved and hugged.

Tuesday, August 3, 2010

things which make my heart smile

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

Tuesday, June 29, 2010

Playing tourist for the day

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

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

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

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

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

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

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

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