The face of autism

With the dissection of the tragic events in Connecticut, compounded by the vicious media spin being spouted all-day, everyday, it seems that everyone has developed an opinion on mental illness, a form of autism called Asperger's, or both.  Add to that, the insanity of the NRA ("the only thing that kills a bad guy with a gun is a good guy with a gun"), something the folks in Littleton, CO might not buy into since there was an armed guard present at the scene of the horrific Columbine shooting, there had to be a glimmer of hope somewhere.  I was searching; we all were searching.  Deep and  hard.

Ironically, the glimmers of hope and humanity came in unexpected places and through devastatingly sad stories.  To know at least one child murdered in Newtown died in the arms of his aide, a teacher trained to support youngsters with autism, made me weep for all the victims even more, my heart shattering into more pieces than I thought possible.

In millions of households there were billions of tears shed during the past week for children and adults we did not know.  In response, there was a wonderful campaign, hatched via Twitter (hash-tag #26Acts).  While my family has joined, with pleasure, in our commitment to commit these random acts of kindness, it was still vexing my soul that autism had been part of this rage, both in the victims and allegedly in the killer.  

When Autism Shines created a forum for people to share the faces of autism, pictures along with captions about the beautiful, positive things these kids live with, I knew immediately that my son would be included.  It's an opportunity to say something to the world.  Something very important that people need to hear. 

I have nothing profound to add to the gun debate.  I profess, as I always have, that no one needs to own an automatic rifle for self-protection.  That access to firearms and ammunition is completely out-of-control and unregulated if one considers you can buy anything off the internet.

I simply want to share, maybe shout from a mountain top, that autism isn't violent.  It's not all bad either, although it certainly doesn't bring sunshine and roses to our lives, or Andrew's, all the time.  To my knowledge, my little man has never picked up a toy gun, even a water gun.  He gives hugs, kisses on the head, and plays with stuffed bears.  Andrew is a face of autism and, despite my obvious bias speaking as his mother, it is one beautiful face indeed.  He is proof autism is shining.

Photo by Kristin Chalmers Photography 

A perfect summer day

Best buddies

It's always fun to see friends who have moved away.  This weekend, we took a hike in the Fells, our goal to find one of the two towers that give you a nice view of the Boston skyline, with our now-Floridian friends.  We ended up at the Bear Hill Tower.  (I have my own painful issues with the locale, which I will keep to myself here).  The weather was perfect, no humidity.  Having always gone hiking there with friends who know where they are going and being directionally-challenged, it was amusing to have to park at one of the few lots (called Sheepfold), as opposed to a side street.  Why you might ask?  *Everyone* at Sheepfold has a dog.  Apparently, it is one of the few off-leash dog parks in the area.  I am scared of dogs no fan of dogs, but I will say everyone was super-friendly and no canine jumped on me.

It was a tad strange.  The family we met up with includes Emily's best buddy C (and her two younger siblings).  But, it wasn't her mom, who is my dear friend, who flew to Boston for the weekend.  Rather, it was their dad.  Another sad/bad divorce situation (do any of my friends stay married?),  so I smiled and just enjoyed it for the sake of the children.  (He was friendly and nice to me).  We all had so much fun.  Too much maybe- C's little sister suggested outloud (clearly 8 year olds do not have filters), "maybe you and my dad should get married."  

Oh my.

As I shrugged off the idea, I couldn't help but laugh. (I barely know the guy and he is the opposite of my "type").   No, I won't be dating my friend's ex-husband.

The morning and lunch were both lovely.  The kids had a blast, we enjoyed some yummy Mexican sandwiches called "tortas", and all was good.  Until, sadly, I realized I had pushed myself too far with the pulled muscle I already had, and the hiking caused *something* to tear/rip/cause excruciating pain.  After lots of ice and ibuprofen, a wonderful meal from an equally wonderful friend, and 48 hours having passed, I'll be hobbling to the doctor's this morning.

In the end, it was so worth it.  Hearing the kids' laughter is the BEST medicine for any parent.

My Son

A few months ago, I blogged about my kids and I enrolling in a study at Children's Hospital about autism and genetics.

Part of the process involved parent interview, another direct testing and observation of A.  The final piece was taking blood samples.  

A big envelope from Children's came in the mail this week, containing the results of the ADOS (Autism Diagnostic Observation Schedule- mom), DAS-II (Differential Ability Scales-Andrew), ADI-R (Autism Diagnostic Interview- Andrew), and the Vineland Adaptive Behavior Scales (mom).  

The rational part of me knows they don't say anything I don't already know.  I do, however, know that reading the report will do nothing but make me sad and likely cry.  I don't want Andrew to be defined by test scores or autism.  Test scores are just numbers; he is a handsome, funny, living, breathing, and special young man.  So, why can't I just throw out the packet?

I can't because these tests no longer show progress, and that itself is data which sadly we need to keep.  Autism is autism. You can call it better/different/lighter names like PDD-NOS or HFA , but it doesn't change the individual.  Andrew was 3 when someone told us he might "lose the diagnosis", for she considered him so "high-functioning".  I still don't know what that term means.  In fact, it may as well be meaningless.

Will Andrew graduate from school?  Go to college?  Live on his own?  Fall in love and get married?  Have children?  I don't know.  I suspect his splinter skills in an area or two of academics will allow him to hold a job.  I don't think he'll ever care enough about emotions to want to fall in love, to feel comfort from another. 

I am not a patient person.  I peeked at the contents of the envelope, the report written in a strength-based fashion, as are all reports that talk about disabilities.  The team highlights the things A can do (despite the fact he scores under the 1st percentile for nearly everything), mentioning them at the beginning and end.  The report talks about how polite he was and that he enjoyed talking about his bears and the weather.  Those are the good things.

I won't let scores define my son.  He is my little boy;  in many ways he's the center of my universe.  I will advocate for him and what he needs until I am blue in the face or until every hair on my head turns white (or falls out).  I don't blame anyone for autism.  I do wish we would have known earlier and intervened more intensely before he was 2.5.  I wish the stupid Early Intervention program hadn't screened him out at 16 months because one therapist thought she saw him mimic the word "duck" on a page. 6 weeks lost.


Tomorrow, we'll venture outside (with the heatwave over, god-willing) and explore the Public Gardens or the Museum of Science.  Maybe we'll visit the State House so he can see where Mom used to work.  We'll have a "Mom and A" day and hopefully have fun during it.  I will hug him when he's sad or overwhelmed and offer him bears for comfort.  I'll "talk" back to the bears when he makes them "talk" to me.  I'll do all this because I love him, because I accept him, and because I can't imagine putting him through the intensive medical treatments I know others do, trying to cure their kids, in an effort to get a "new and improved Andrew".  Gosh, I'm beyond thrilled he willingly takes a multi-vitamin :-)

I'll hold on to hope, too.  Peace, my friends.

Moments of grace

A boy and his bears.  The bears are his best friends, next to his little sisters.

My handsome not-so-little boy

Historically, haircuts have not gone well for my young man.  See here and especially here.  Today, however, he shined.

A definition of success for Andrew: stress-free community outing leading to a quick, painless trim. This may not seem like "big news" in the world of special education, but it is HUGE news in my world of parenting a child with autism.  Because of the high-quality Occupational Therapy he receives (thank you, Pathways), my son can tolerate what is, for most young men a stress-free experience.  For him, they have typically included screaming (him), tears (him and me), and frustration (him, me, hair dresser, and other patrons).

Thank you, Jen Z., Lorraine, Kelly, Kerry, Bob and every other amazing OT who helped us get here.  It's a good place.  Andrew is happy with the cookie he chose as a reward for rocking the hair cut experience.

For what it's worth, it makes for a strange life when the highlight of the day has been a hair cut.  Next, onto the needed, and important, process of buying a razor as Andrew very much does not want the beard fuzz on his chin or above his lip. 

My little boy will soon be a teenager.  Time flies.

Mother's Day

Just when you wonder if you're a good mom who is making an imprint in your child's life, she comes up with something like this.  Last year, S wrote this all by herself,  printed it out, and glued it onto the cover of the Boston Sunday Globe.

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.  I am so blessed to have a few very special women in my life who have helped fill the void. I amblessed my birth mother did not give uo but cared enough to allow me to be adopted.

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 (the latter is a work in progress).

I will never lose sight of the fact that my children are more important than anything else.  The village they belong to loves them.

I know what it's like to feel the weight of the world (specifically the IEP/school one) sitting on your shoulders.   Today presented an opportunity to pay that friendship and kindness forward... To all you *extra-special* moms, know you are loved (even if your kids can't/don't tell you as much, even if you don't *get* breakfast in bed, flowers, or jewelery, even if you feel stressed to the point of exhaustion by a system which struggles/often-time fails to support kids and families).  Your children and friends care.  It takes a village, folks, doesn't it?  

S's "article" tells me I must be doing *something* right.

Happy Mother's Day!

Finding inspiration at home and at work

Today brought a birthday visit from my friend and her kids.  The plan was for Sarah to learn to make chicken, broccoli, and ziti from scratch.  Mission accomplished, with the added bonus of having uber-cool nails applied.  It touches my heart to know someone cared enough about my daughter to spend an afternoon doing something fun with her for her birthday, just because.

The coolest part of the day besides hanging out with my friend and seeing Sarah so happy was hanging out with Ryan.  His mom has given permission for me to write he is a very special client, one whose case in many ways defined my career and work.  In six months, he has started talking more, following directions, and his tantrums have lessened in intensity.  He started crying when it was time to go home, I talked him down and we made a deal that he would come back to play soon.  The tears stopped and he got over "it" and walked to the car peacefully.  When kids with autism get the right services, they can fly.  And, while the work has just begun, he is flying.  That is amazing to witness.

Genetics

With spring break week drawing to a close, it's surreal to think that my "baby" girl will turn "double digits" on Monday.  I cannot remember not being a mom to these four children.  But, every day it gets more difficult to remember the frenetic days of babyhood and accompanying nights of sleeplessness, the never-ending diapers and pull-ups, the twelve incarnations of strollers, toddler-dom, Little People everywhere, Blues Clues, preschool, Buzz Lightyear and Bob the Builder tents, and Build-a-Bears...  parenting four kids under six, in most meaningful ways by myself, was a whirlwind.  It was fun, I worried about safety and making playdates and paying for preschool, sports, and lessons.  Now, while they have active social lives and are avid readers and iPod users, I worry about things like internet safety and how to pay four college tuitions.  And, then there is Andrew.

2005

Given the special "gifts" of my children, mostly Andrew's autism, our family is a genetic researcher's dream.  We'd be ideal if not for the fact I have zero family history to provide, being adopted from Mother Theresa's orphanage in India as an infant.  

As part of an NIH-funded genetic research study, I had the parent response tool of the ADOS administered for the second time in Andrew's 12 years.  Gosh, I forgot how sad and lonely those tests can make any mom feel.  The questions focus on everything he can't do; thinking back to when he was 4-5 (the age the testing tool asks you to describe his social functioning at in addition to current day functioning).  The reality is that he isn't that different today, at 12.5, that he was then.  Interest in peers.  None, perhaps less.  Meaningful conversations?  Sometimes, with highly familiar adults.  Stereo-typical behaviors? Yup, still there, although changed.  He's gone from spinning wheels and full body flapping to "running laps/pacing" while vocalizing, and finger-tapping.  Recounting all of this, my heart dropped in the window-less conference room.

Why did I do it at all?  I participate with the hope that maybe someone will be able to find genetic markers in siblings and that children will be able to access intensive intervention earlier and hopefully have better outcomes.  As completely uninspired as I am with "Lighting it up Blue" nowadays (sorry, fellow autism moms), this seemed a way to help the smart people find some answers, if indeed there are answers to be found.

As I sat with the genetic counselor, the first question was easy to answer.  How many pregnancies have you had?  I answered "4".  Next to each number, a name, sex, birthdate, birth weight, gestational age, and mother's age at conception were filled in.  However, it asked about pregnancies, not just live births.  And, yes, they wanted to know if there were pregnancies which did not lead to live births (the PC way of stating miscarriage or voluntary termination).  They wanted to know the gestational age at termination.  I went a bit numb, but I added the accurate data.  There became a row 5 and 6; 6 is what broke my heart. 

It had been a very long time since since I even thought about it, more or less cried about it.  (Note to genetic counselors:  autism moms may be strong, but we are vulnerable as hell, and adding other factors in, you might want to keep a box of tissues on-hand).   When I think of the 6th, in the context of an autism study especially, I can feel the pain all over again.  When you mix the genetic material of two parents, both of whose immediate families have been severely affected by autism, the odds don't seem high you would create a child who either does not have ASD or isn't highly susceptible to having the diagnosis.

Being a mom has been the great joy in, and accomplishment of, my life.  While it's true that my kids have their challenges, I can not imagine my life without them in it.  My oldest was medically fragile, with a diagnosis, at age 3 months, of something no one could pronounce.  Andrew was diagnosed with  PDD-NOS, an autism spectrum disorder, at age 2.5.  I'm not sure why his little sister was so anxious to get "out", but she decided being born 7.5 weeks early was a grand idea, hence I'm a member of the emergency c-section/preemie club, too.  My baby has learning disabilities, in many ways more pronounced than the others, since she is in inclusion.  She struggles so much; it's getting harder as she's getting older.  Thankfully, after some careful advocacy, she is using an iPad or laptop for much written output and her work is being modified to meet her needs and allow her to feel more successful.

Now

I celebrate a decade of Sarah- her joyful spirit, big brown eyes, creativity, and love.   Yet, I am thinking about Row #6 on the sheet the geneticist filled out.  I wonder what it would be like to have a preschooler again.  I remember the horrifically painful (physically and emotionally) experience of expecting a little boy and then not being pregnant any longer, seeing him, and then consenting for a local hospital (part of the Autism Consortium) to utilize his body (called a fetus, of course) for research.  Now, my blood and Andrew's are being used by the same group of researchers, for the same over-arching purpose.

I truly hope autism will someday have a cure, but first we need to find a cause.  On Monday, my daughter will turn 10.  Tomorrow, we will enjoy a red velvet cake with cheesecake in the middle to celebrate (her request).  She will beg to see "The Hunger Games", wanting to be like her big sisters.  I will say no for a variety of reasons, including the fact autism chains us to our home on weekends, and autism and big birthday parties definitely do not get along, at least at the age of 12.5.

Hope.  That's what you have to have as a mom, for all your kids, hope that you are doing a good job and that they are growing and learning and will someday be respectful, kind adults who make a bigger difference in the world than certainly I have.  You also have to have a lot of love.  The latter, I possess in spades.

This is a time to put work away and play with my kids and ENJOY them.   Have a fabulous weekend and hug your children.

A REAL photo essay

Just when you think you should change your middle name to stress, a really good day appears out of the blue.  Before school, Andrew was photographed by the awesome Kristin Chalmers for her Broad Spectrum Project.  The photos speak for themselves. 

Love you, Kristin.  Thank you for capturing Andrew so perfectly.  You have an amazing gift.

Unplugged

I was cleaning out an old pocketbook and found the old Nokia flip-phone that preceded my Blackberry.  My 9 year old exclaimed, "That phone is so old. It must be 10 years old".  No, not really,  it's probably only 4 years old.  But, it did get me thinking about how technology has become a central part of my life.  I am not sure, however, how comfortable I am with it invading every little crevasse of my home, thoughts, and being.

In the past few years, we've been fortunate to be able to add nifty technology items to our household.   The iPod Nanos weren't a big deal as the only fun feature is a camera/video camera that we didn't really use.  At the time, we didn't own a Mac so therefore didn't get all the available convenience out of them anyways.  We also got a GPS for the car, affectionately named Jinger, who usually gets me from point A to point B relatively unscathed.

Then, came the iPhone (me) and the iTouch's (kids); talk about being uber-connected.  Between the iPhone and the computers we own (4 in total, including 1 workhorse desktop and 3 laptops in various states of usage), I am always talking to someone, reading or writing email (easier on a iPhone than Blackberry, but imperfect thanks to the insane "auto-correct" feature it has), or looking at a screen.

In some ways,  the technology is good; it allows me to multi-task.  Taking a walk or hike while listening to my iPod is fine.  I don't think it takes away from the experience, but I also shut the music off sometimes, especially in the mornings, to enjoy the sounds of the Pond, or the Fells.

In contrast, having my iPhone in my hand checking emails while waiting at the pharmacy for a prescription, at a school while waiting for a meeting to start, looking at documents and other pertinent information on the screen, or even while I am home and involved in a project has started to grate on my nerves.  I want to be connected, but I also remember the days before laptops and cellphones (not that long ago, and I managed just fine.)   Working from home, specifically in a home without a dedicated home office, requires a certain discipline of keeping 'work time' focused on only work.  The screens are okay; that is until I have to buckle down and read a long, detailed assessment or an IEP, taking notes (in my case, handwritten on the first go by), or write a strategic case management plan (again always by hand first).

Having the printer and fax going, a computer humming, and the "not-ok-in-a-real-office" luxury of a Yankee Candle burning, all seem to work.  Interestingly, I've learned that doing work on my laptop doesn't work when at home.  I am at least twice as productive when I use the desktop and am sitting in an office chair, in front of a wall usually covered in sticky notes about kids and cases. It's something which makes the work seem more "real".

Then, there is the opposite end of the spectrum.  I am home, alone or with occupied kids, and the laptop becomes too tempting, screen open.  How many millions of hours have been wasted on Facebook when I could have been reading a book?  I have never played games on the computer, but I also have never really enjoyed board or card games, period.

In the past few days, I've made a concerted effort to shut down at a certain time and not open the laptop again until I am showered and dressed in the morning.  I've stopped myself from checking my email on my phone, despite it being in close reach while on my nightstand.

I have slept better and I feel a bit liberated.  Gone is the inability to read a book cover-to-cover, which developed over the past few years. (This is saying A LOT as I have always loved to read).    I now know I wasn't distracted by anything internally (hello ADD and the Ritalin I now take along with 90% of the population), but rather the distractability also had a lot to do with the fact I was always looking at a screen and that the screen was always available.  Why read words on a page when you can see a vibrant screen?  I don't want a Kindle or a Nook and will never buy one.  I like the feeling of holding a book.

Much like the bowl of candy you *really* want more of and you tell your kids to hide where you can't find it because it is too damn tempting, I should entrust my laptop to one of my more responsible kids for the same purpose.  In addition, it's too easy to write something you'll regret on the internet or in an email.  Computers offer "instant gratification",  a place where even patient people do dumb things.  Note: I don't think I have ever had much patience.  Dealing with tantrums and autism has taught me some.

This post isn't about living an unplugged lifestyle.  I'd be bored and don't think the granola-crunchy thing is for me.  (I went hiking/real camping overnight in the woods, once, with a friend:  I hated it.)   As an autism mom, my life is pretty isolating at times, so the internet has the ability to keep me connected to those I love; call it a "virtual village", if you will.  Truthfully, without the support on-line, I'd be a puddle on the floor, having cried myself into it after dealing with a tantrum or anxiety marathon.  I can't even count the number of friends I've made beginning on-line, or the clients who have found me there.

Self-control is not a bad quality.  For a variety of reasons this past year, I haven't been able to get out and have much of a life.  Okay, that's a whole other post, but I haven't done a lot of walking sans the places within 5 miles from home; the old standy-bys.  This week's forecast doesn't include rain; a hike or walk in an old favorite like Lynn Woods, Cutler Park, or somewhere up Route 2 is definitely in order.  I can't lock the phone in the car in case I get lost, injured and need help without which I'd die, you know, all the excuses... I can, however, shut off the internet,  listen to some music, and enjoy the brisk fresh air.

Of course, I'll blog afterwards about how great it was being unplugged.

S's words

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S’s Story: Who I most admire

January 13, 2012, written by S.- Grade 4

“Chirp, chirp, chirp”, the birds sang.  “What a lovely day”, I thought, as I walked around Horn Pond with my mom.  My mom said,  “I love spending time with you.”  “Me too”, I replied.

My mom’s job is very important.  She is a special education advocate.  This means she helps kids gets special services from their schools.  I admire her because she will work for free sometimes.  She works for free so people with not much money can still have special services for their kid or kids.

After my mom’s done with her work, she is very generous to me and my siblings, J, A, and E.  She brings us to concerts, gets us pets, buys us toys and books, and helps us with projects.   She is also generous with her time and helps anyone who needs it.  If I told you everything she did that was generous I would end up writing up writing a book that is 300,000 pages long.  I have about 900,000 million memories of her being generous and nice.

She’s also very caring.  She gives my siblings and I plenty of food and a nice, big house, nice clothes, and so on. She makes me feel better when I am hurt.  She loves me a lot and that’s why she is very caring.

If I wanted to, I could write a book about my mom.  Now you know all about how caring and generous she is and how much I admire my mom.  My mom is great.  That’s why I chose her to write this story about.

The End

1/14/12