Mothers, Un-mothers, and walking together

At some point, many mothers no longer feel like celebrating birthdays.  Some times, it's due to the number of candles on the proverbial cake.  Other times, our birthdays are not celebrated because moms, in particular those who happen to be single, of children with special needs are responsible for ALL the day-to-day needs of our children. We're tired or (perhaps relatively) struggling to provide.  I'm not trying to be a party-pooper, for I love a good party.  After I had kids, the focus (and money) of birthdays/parties went towards them. 

Then there is "Mother's Day".  I am just not into the huge celebrations.  It's fair to say that my mothering is loving and joyful, but filled with parts grumpy, impatient, and frazzled.  It’s an especially stressful time/month in our family’s life and my work.  Every day, being Andrew's mom is work, but there is often feedback, overt or direct, from school that I am the worst. mother. of. the year.

Caretaking was always important to me.  With church or friends, helping, especially kids, was part of what I happily did.  As a stay at home, married mom, my life was about my kids first.  For 10 years,  however, the goal to be a good mom has been work.  I'll always try to take care of kids, mine or others.  Seeing kids smile or successful is the greatest measure of success.

I firmly believe that Mother’s Day isn’t something we earn.  Maybe it should be a normal (whatever that means to you), low-key Sunday as opposed to a Hallmark Holiday.   What would it mean to celebrate an "un-Mother’s Day" instead of the normal flowers-chocolate-brunch festivities I hear others others partake in every year?  (To those of you who do, please read this as a coming from someone walking a different path, who wishes you much joy today if what you experience makes you happy).

An un-Mother's Day" could be indulging in activities that have absolutely nothing to do with mothering. For example, uninterrupted sleep, adult conversation, spa days, wine, high-quality chocolate, and amazing meals that someone else cooked.  In other words, a day off with considerable geographic distance from one’s progeny.

Mothers are told to consider our children "perfect" as they are.  (This reminds me of holding my babies for the first time... oh how they were they indeed PERFECT).  We're counseled that our dwelling on any extra challenges is pathetic and not PC.   The neuro-diversity movement chastises us for not looking at autism as a gift.   Yet, dwelling on versus acknowledging the differences between mothers of children severely impacted by disabilities, as we live it every day, are not the same things.

The people who usually judge are mothers of neuro-typical children who look at you as if there are 19 horns growing out of your head.  Perhaps they are the mothers of children with special needs who have a large and dynamic support system (with a great husband typically included in that), women who definitely don't walk the path alone, at least much of the time.  News flash: even with a husband, it's not like his mere existence makes life easier, especially with special needs-related "stuff".

Let's describe motherhood via positiva – what it is to be a mother.  Simplifying this viewpoint, I offer it's about love, care, nurture, and acceptance of our children.

Yet another way to understand mothering is the via negativa – what it is not. What does this day mean for those who are "un-mothers"?

• Un-mothers could be mothers who stay in controlling and/or abusive relationships *because* of their children, terrified physically and/or emotionally to leave and cause (more) upset and disruption to their children's lives.  Maybe they stay because they are afraid to be alone.

• Un-mothers could be women who want desperately to have children, those who suffer through infertility, miscarriage, and failed adoptions. 

• Un-mothers could be women who have children, but have also suffered pregnancy loss.  Talk about two sets of feelings colliding- celebrating the children you have and love and mourning the child/children you never got to hold.

• Un-mothers could be women who have chosen not to have children, feeling called to different paths. 

• Un-mothers could be women who have suffered the loss of a child, whose motherhood has been broken and reshaped by pain and death, who dealt with burying their child, something no mother should ever have to do. 

• Un-mothers could be single mothers, who have to give their children over to their other parent, despite the negative impact they may see after each and every visit.  For mothers of children with disabilities, this one is unbelievably painful, as we are torn between wanting our children to love and be fully loved and accepted by their fathers while knowing some co-parents can not meet the needs resulting from their disabilities (and, sometimes, don't even try). 

• Un-mothers could be women who do not want the children they have and can not accept them.  Okay, that's harsh, but I'm sure for some women, it's real. 

Then, though not un-mothers, there are mothers who might mourn or be conflicted on Mother's Day, as they have given their children up for adoption or termination, many of whom don't know what became of the babies they gave birth to.  How much a day like today could hurt their hearts.  As a child of adoption, whose birth mother was brave enough to leave me at Mother Theresa's orphanage in Kanpur, India, a woman I will never be able to find or know, I think of her and those who have done what she did.

While we can not walk in another's shoes, I was recently reminded we can walk with them, the mothers and un-mothers, alike.  More than anything, we can do the best we can to support them.

Don't judge. Please do remember that there are those for whom "Mother's Day" is extremely painful, a day when there is no celebration involved.  Motherless daughters, adopted daughters, mothers with kids who can't/don't "celebrate", mothers who have no villages...  I wish you all a happy Sunday.   Just please remember the moms who love their kids, try so very hard, yet have so very little to celebrate as there are few, if any, people who celebrate and love them.  "Mother's Day", ironically, could feel exceptionally lonely as the pomp and circumstance around them are stinging reminders of the loneliness they feel and live not just on Mother's Day, and on many days.

Community

When I think of the reasons folks go to the emergency room on New Year's Eve or NYE Day, I think "over-partying".   In this frigid weather, maybe slips on ice, or skiing, sledding, and ice-skating accidents, stuff like that  (Until now, to be honest, I never really gave it all too much thought). 

Just to add some spice to our lives, not that there isn't enough health-wise going on, I can now add "New Year's Eve Emergency Room" to my resume.  After 16 hours of unabated, sharp stabbing pain, along with nausea (which I mistook for indigestion), during which I tried desperately to make what ever was hurting stop. I took Tums and Ibuprofen. (Despite Zofran, I threw it all up anyways).  *Something*, maybe a bad stomach bug and pulled muscle, was simply not getting better.  It was, in fact, getting worse.  

My kids had tried to get me to go to the hospital hours earlier. (As is typical, my PCP's office wasn't helpful.  Returning calls in a timely manner, or even triaging them appropriately, are not strength areas).

At the ER, I got taken it right away.  Forget 1-10 pain scale ratings, I think ER triage nurses can read the pain simply by looking at you.
 
There, I learned all about gallbladders.  It turns out people can develop gall stones, and not know they have them for a long time.  I had just one, however it was blocking a duct, this presentation indicated emergency surgery.  I admit to being grateful it could be dealt with laproscopically.  However, it feels like, and I am quoting the surgeon, "having been stabbed" 5 times.

On New Year's Day, I watched the Tournament of Roses parade from my hospital bed.  Friends came to visit, doing (walking) laps in the hallway (only a really goof friend would do this) with me, and even bringing flowers.  (My best friend took two of my kids and she, and her parents, spoiled them to death during a sleepover).

Last night, I came home.  The scene that unfolded was a bit surreal.

If you happened to be a stranger looking at my house last night, you might have thought you were witnessing mass chaos. A boatload of dear friends here, bringing food and household stuff, putting out trash and recycling, doing dishes and laundry, making the bed, feeding cats,  even finding and going to one of the two pharmacies open on New Year's Eve, and general post Christmas clean-up.

But it wasn't chaos. It was community.  People who love my kids and me lending a hand, or seven, on a cold night to ensure I was supported and loved, and able to care for my kids despite being in tremendous pain.

I am so blessed to have such a village surrounding me and my kids. I love you guys! 

Ironically, last night, it was my son who showed such kindness and real empathy.  He asked to crawl into bed and snuggle, bears in tow.  He understood to be gentle.  Autism can shine and his heart is oh-so-big.

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

Holidays

With the holiday season in full swing, I want to ask if you'll keep your heart open to the other one percent of us out there, the autism community. Like you, we will be out-and-about during this busy time of the year.  It is my hope that when you see us, you keep your comments, suggestions, and criticisms to yourself. 

How will you know me?

I am the boy with hair so long I look like a girl. Sensory issues make haircuts painful for me and my Mom is willing to pick her battles.  Hair is not one of them. 

I am the little girl in a spring cotton dress when I need to be wearing winter clothing, but I cannot stand winter clothing.  Trust me, Mom makes me wear a coat outside, so don’t remind her that my dress is wrong. She knows.

If I am verbal, I might speak in a monotone voice and repeat lines from my favorite movie or TV show.  If I cannot speak, I might look past you, or reach up and touch your mouth as I try to understand why mine will not work like yours. I mean you no harm, I am trying to understand my world and how to make it work. I might stim, pacing back-and-forth, back-and-forth. 

If I am on the higher end of the spectrum, I might amaze you with my knowledge of the calendar and presidents, yet I cannot answer you when you ask me what I want for Christmas.   You know what?  I don't want anything.  I want to be with those who love me, have a calm and predictable day, and see my mom and sisters happy and calm.  (I will, however, enjoy the m&m's in the Christmas stocking my grandma knot for me right after I was born, and a present or tow if they include a bear.  Don't tell my mom, but I'd also really like noise deafening head-phones, too.)

I might spin in circles,  flap my hands and/or jump up and down. I might carry a stuffed bear that I should have outgrown years ago.   I might need to count all the ceiling tiles in the restaurant before I can sit at the table. I may need to touch the glass window over and over and over. Please don’t tell me to stop, I really wish I could. I might talk too loud and say all the wrong things to the waitress taking our order. I might burst into tears when my plate comes because the French fries are too fat, or they are already touching ketch-up or another food item. I'll have a melt down; I'd wish I knew why it mattered too.

When my Mom takes me to see Santa in the Mall, I might rush past you.  Standing in line is very, very hard for me to understand or do. Please don’t tell my Mom how rude I am, she is dealing with enough trying to keep up with me and simultaneously enjoy my siblings sitting on Santa’s lap and talking to him.  If I have a melt down because I saw a camera flash, let it go. Keep your advice to yourself. If I am taller than my Mom and still want to see Santa, please understand that I am just now for the first time in my life able to enjoy Christmas and Mom is excited to finally see her "baby"enjoy this holiday.  When I was 3 and 4, I was unable to go into public places or even understand Santa. Now I can enjoy him and my Mom has earned the right to see me give him a high-five.  I have earned the right to shake his hand and give him a high five.

I get very excited over Hanukkah, and want to be included. I might be over stimulated by the candle flame when you light the menorah and try to touch it or blow it out. I might cover my ears thinking it is going to blow up like the fire crackers did last 4th of July. Please don’t scold me for hiding under the dining room table and trying to pull your beautiful blue table cloth off as I duck under. If I snatch every chocolate gold covered coin off the table, I am sorry.  I like to collect shiny things. Yes, Mom does think it is a shame I can’t keep my yarmulke on my head; and no, she can’t just force me to wear it.

Please understand that light and sound, touch, even hot and cold can confuse or upset me. I react to these events in different ways. I may withdraw even more. I may have a meltdown. I might stim to comfort myself. I might hurt myself or turn on my Mom and use her like a punching bag. I will never learn how to understand the world if I am not allowed to venture into it. Each new event takes time, patience, understanding and lots and lots of hard work on my part and that of my parents, and therapist. I am trying, they are trying, please give me a chance without judging me.

I am the other one percent. I am your next door neighbor’s child. I am your cousin’s child.  I am a classmate of your child’s.  I am a member of your community.  I have autism. I am not disabled; I am differently-abled.  

I am not a tragedy, I am a person. Not understanding the difference is a tragedy.  Just think how you would want to be treated, if you were a part of the other one percent.

villages and autism

I know it takes a village.  In my work, that's a lot of what I've been providing to families who need them, this week in particular.  However, I've been lax to reach out to my own village at a time we could use some kindness and good/better karma directed towards our little corner of the universe.

This autism-heavy week has been a stark reminder of the hell brought on by what this disorder can do to my kid.   Many #youmightbetheparentofachildwithautism quips were batted around in the past week by me and many others .  That  light-hearted back-and-forth was a welcome diversion from what autism really exists as in our home.

Reality sunk in on Sunday after I had what seemed like really awful heartburn (having only experienced once before this sharp, searing pain) and someone mentioned gallbladders.  Not heartburn, after all.  Turns out my gallbladder and I don't get along so well and it should come out.   As if I have time for that.  A cause? Stress.

Today, Andrew's laptop screen was broken during a power struggle/behavior/meltdown.  This is the second broken laptop in 4 months.  In fact, this was the laptop that replaced the other one that got thrown on the hardwood floor during a similar tantrum.

The pieces of the puzzle which is Andrew aren't fitting together very well at all this week.

He's 12, a boy in what is becoming shockingly more and more like a man's body.  While his bears have brought him great joy and comfort over the years (remember, he doesn't have functional play skills and even could care less about video games, oh how I wish my son would play a game on the Wii like other boys his age), nothing brought him peace tonight.  For seven hours, with short breaks, he was a ball of anxiety, uncomfortable even with my touch or reassurance, which is not typical for him.

He was able to say, "I've been giving most people an attitude recently. I hate lots of people."  My heart broke.  So many people love him, yet he knows (and now names) people he views as having abandoned him (in his mind, because he's autistic).  That's his new "out, by the way.  When the behaviors happen, he maintains, "I'm tantrumming and not calming down because I am autistic".  This drives his older sister crazy; he drives her completely nuts in general.  I feel badly for her, being the older sib of a child with autism must be so damn hard.

As a mom, I feel paralyzed.  Not a little unable to help, but a lot unable to even get through to the boy who usually loves to snuggle with his mom, make brownies, or have endless conversations about the complex, intricate lives of the many bears, Build-A-Bear and others, who live here.

A question he kept asking over and over again today was new. "Are you and Dad every going to get married again?"  I told him we were not going to get married to each other.  Then he wanted to know if we would marry other people, have more kids, and, by the way, would they have autism just like him.

My little boy, not so little as he is taller than me, lies next to me, a bear in his arms, a medication for anxiety and sleep in his body, a prisoner to autism and to the hellish chaos it creates.  Tonight, fully recognizing all the things I have to be thankful for and that others have many more challenges, I mourn for the boy I thought he would be and commit to trying to better understand and accept the boy he is. I pray for strength for him; as I also pray for strength for those around him.

He needs a village now, whether he wants to admit it or not.  His sisters and I could use one, too.  Hopefully, tomorrow will bring Andrew some peace.

Giving thanks

Today, I am thankful for friends who are my chosen family, children who give me purpose, bring me joy, and who I love more than life itself, work I truly enjoy (along with some really wonderful clients who I feel blessed to also call friends), and a village who envelops my family in caring, kindness, and strength.

Friends, however few, are honest, fun, compassionate, giving, and even inspirational.

In a year where I thought I had found my faith, only to lose it again, I give thanks to God or whatever greater power has existed, and hope she/he comes back into our lives.  I give thanks to the good people at our church, who offered Christian love and support during a very tough spring/summer and am glad my kids made some special friendships there.  

I especially give thanks for the moms I know who show me every day, in small and large ways, how to be a better person.  I'm still learning and am beyond impressed by what I get to witness every week; moms being caretakers and most times taking good care of themselves, too.

This year, I am thankful to be in a position to help others, the place I lived in for many years pre-2006.  It gives me a sense of purpose to support others, just as others have supported us when we have needed it.

Finally, I'd be remiss to not to be thankful for the very special kids I work for and with, along with some very talented educators.  I am inspired by children who overcome such adversity and by their parents who only want them to be happy and succeed.  I am fortunate to be able to earn a living helping children thrive.

Happy Thanksgiving, friends!  May you be as blessed as I am.  My hope is that we all, me included, will be able to realize that on even the not-so-good days that inevitably occur in the cycle of life.

Little People

Sometimes, you get to play hooky from all the household chores, sit down on the rug and play with your kid.  At 9, Sarah still has an amazing imagination.  We have loved to play with this set of Fisher Price Little People, circa 1978-ish, my set from my childhood, over the years  The airport, the place, the hospital, camper, house... it is a blast to play with.  Coupled with our "bucket of ponies" and some of the other few toys we still have, Sarah and I had an awesome afternoon together.

Grace happens

This morning, when it was still pitch black outside, I walked to the back porch, fleece on, and took in what the week had been, and mentally prepared myself for what was going to be a challenging day.  Breathing in the cold, fresh air, I stood, alone, and enjoyed watching the beginnings of the sunrise. 

The morning seemed, in advance, a mountain to scale, not knowing how high we would climb, or if we would need to descent before reaching the peak.  In any high stakes meeting where people are counting on me, I do feel the weight of the world on my shoulders.  I knew we had the right evidence and that I had produced high-quality documents.  Without resolution, today could have lead to a not very fun week after Thanksgiving for many people.

The meeting was painful only in the sense that some of the people there did not want to be there and seemed so uncomfortable.  But, folks needed to hear me out, and did so respectfully.  Afterwards, we needed to hear them, and did so respectfully.

In a moment of grace, it became clear we were both looking for the same thing.

It makes me happy to know a student will have a chance to heal and learn;  I was able to play a small role in making that happen and that is a great "paycheck", the  thank you from a grateful mom.

Sitting here in the calm, feeling confident, I am chatting with my son who randomly gives me kisses on the top of my head, enjoying some leisurely discussion with my daughter, and even snuggling up with the cat.  Tomorrow, I'm taking a day off from work and going to do something nice for myself.   A hike sounds like just what the doctor ordered, or maybe just a walk around Horn Pond.  Later, my teenager can meet a potential new friend and bond over social justice issues and a love of animals and all things not mainstream.

I am so very grateful for my friends, my children, and my village.  Furthermore, I am grateful that I get to do work I love and *maybe* change kids' lives along the way.

Guest sib post by E (11)

      As you may recall from my earlier post I said that A and I aren't getting along. But a lot of things have changed since then. Andrew and I get along very well now. I probably spoke to soon, tomorrow he might hate me, you never know. Even if he does hate me tomorrow I will love him just as much as I always have. 
     I don't like to say he has Autism because Autism can mean so many different things, so I like to say he has "Andrewism". "Andrewism" can make our life very challenging but very rewarding at the same time. He might scream all the time but he is one of the smartest kids I know.

     A's Savant skills have made him the smartest kid I know. If you tell him the year and day you were born he will tell you the day of the week you were born. Did I mention this was he was 5. In the end A is the only brother I have and I wouldn't love him any more if he didn't have Autism.       


-by Emily, Age 11
      

The public meltdown

This afternoon, I almost had one.  But, alas, it was my son's meltdown that I reference.  A trip to get what was supposed to be a 5 minute haircut turned into a near-total catastrophe.  The only thing that redeemed the experience was the fact that Andrew did end up with much shorter hair.  I won't be mentioning to him how handsome I think he looks.  I don't want to give the event any more attention than it's already had.

We've gone to the same hair stylist for A for almost a decade.  We love Anita.  I would drive twelve hours to see her.  The patience she exhibits, coupled with her tremendous skill with a pair of scissors, make her a favorite of many of my autism mom friends.  Her friendly demeanor with all kids make her a favorite of moms of completely typically developing kids.  Did I mention we love her?

Armed with two ABA therapists, the process went as it has 50% of the time A has ever gotten his hair cut.  He hates how it feels.  Unlike girly-girls like me who love trips to the hairdresser for the scalp massage during the shampoo alone, the experience of someone touching his head, and the sensations from the buzzer (only for "clean-up"),  make A miserable.

It's different when your kiddo is 5 years old and taking a fit in public.  A was little, his meltdowns less intense, and he was cute even when upset. Mostly, it's not entirely uncommon for a 5 year old to melt down in public.   Of course, people stared and many along this road made snide comments, which stung no matter how much I wished that hurt away.

It's an entirely different experience when your autistic child is 12, two inches taller than you, and weighs 140 pounds.  No one thinks he is cute.   Everyone thinks he is crazy.  I feel like people are staring at me (well, many are at least glancing at me wondering what the hell is going on), having decided I am an terrible-awful-no good-very bad mother.  I love my son.  That doesn't translate to "I love autism" and understand what to do all the time.  I wish I did. I wish all the money we and others raise for autism research felt like it was helping; that anything was getting better for treatments or that anyone was close to finding the root cause which cold lead to a cure.  Days like this, or those when he runs out of the house screaming or melting down because all the circuits in his brain can't and don't connect, make me sad.

He got through today.  I got through it, too.  Anita is an angel.  Andrew will need, and get, another haircut in 10-12 weeks.  And so the story goes, again and again and again...