Sunday, September 11, 2016

September 11th- Find the Joy

15 Years Later

9/11 didn't touch me too personally; it was my child it has forever touched.  She is not a deceased victim of 9/11; she is here with us.  This day defines her to the world; for it was her 4 year old birthday, a beautiful, sunny morning.  Morning drop-off to the Shamrock Preschool complete, I went home and turned on the Today Show, in prep mode for her planned small, family friends dinner and cake celebration that evening.

My in-laws had just left for Rockport after a short visit and my husband was at work.  I worked in the house, putting breakfast away, Andrew playing "Little People" and Emily napping in her bouncy seat.  The "Today Show" was on TV in the living room of our split entry.  The morning was good.  

I was standing up, I don't remember exactly what I was doing, when the first plane hit and all cameras zoomed to the 2 World Trade Center towers.  

The day was a blur.   I watched TV, called loved ones, especially those I knew traveled and flew regularly.  I picked up Julia at preschool, put her in the basement to play and watch a video, and at some point walked out the front door.  Neighbors in our quiet cul-de-sac had gathered in the street, all of us dazed, all of us scared.  The sky was noticeably quiet, for above our neighborhood we usually heard or saw planes on their way to land at Hanscom Air Force Base multiple times per day.

In the days and weeks later, we would learn of folks we knew who lost their lives that day, including a high school teacher of mine.  We learned who Osama Bin Laden was and that some of the hijackers had stayed the night before at a Days Inn near where we lived when my husband was in grad school, a place I had driven by dozens if not hundreds of times.

For my family, this is the bigger story.

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.  Last weekend, we celebrated her birthday with a small party.

The day after 9/11/01, Julia drew a picture of what she described as a "plane crashing into a building".  I still have that picture.  The comments people make about "what a terrible birthday" we now realize will happen every year too often around her birthday.  There's still a little gasp when someone asks when her birthday is after we answer.
19th Birthday
On her 4th birthday, yes, our country was attacked.  That evening, we muddled through a birthday celebration with our closest friends J and J and K and J and their baby, M.  We had a cake and sang "Happy Birthday".  There were presents.  Once the kids were settled in bed, we adults all sat, in shock, and watched a Presidential Address on the TV in my living room.   In retrospect, I am glad to have shared such a painful day with our then very best friends; for it was not a day to be alone.

Julia's just a human being with a birthday.  What happened on that day is awful and evil, but it doesn't define her.

Thursday, November 12, 2015

It's ok not to find the calm

I recently read an essay about how to find your calm as an autism mom.  The author writes she has indeed found her calm; she is definitely a better woman than I.  With Andrew now 16 and adulthood looming, I’m back to the unsettling semi-panic mode that was pervasive throughout the first years of therapies and schooling post-diagnosis.

I can do calm.  I was truly calm and totally relieved the day the diagnosis was delivered.  It meant there was a title for what was going on with my boy, and that title could help him get intensive services through Early Intervention.  I was alone, 7 months pregnant, in a tiny exam room at Mass General when a kindly Indian doctor told me Andrew met the criteria for a pervasive developmental disorder.  No tissues needed.  I asked him for a letter that day so I could start working with Andrew’s EI team to advocate for increased services.  I was okay, for the diagnosis had been suspected for 6 months.  I didn’t “blame” a vaccine.

The craziness of those first few years, including speech and OT every Monday, full day special ed preschool, social skills speech group with his sister and EI therapist who also had a private practice, being supported by our local autism support center, and other EI moms going through the same stuff.  The days were long, schedules busy, but we had a warm, caring, supportive group of friends and a church which held us close. 

We were in a groove.  Granted, it was an autism-fueled one, but we found our “new norm” and Andrew was learning.  I was learning how to juggle and how to communicate with him.

There was a turning point where the stress returned.  When Andrew’s two younger sisters, one 13 months younger who was a preemie at that, started to talk and do things he couldn’t, there were more pity parties in my head that I now regret.  While on the outside I understood autism was a neurological disorder that could be treated, but not cured, deep in my heart I didn’t grasp that the older he got, the less abled he was than his siblings or peers.  This also coincides with the time his tantrums (mostly because he couldn’t communicate his wants and needs) at home and in the community went through the roof.   Then there was going to our favorite park with two huge slides and him pulling down his pants and pull-up and pooping on the sand.  Good times.

When he was settled into a good school program with a great aide, there was more calm.  The kindergarten teacher in gen ed who had him for two years may have been new to autism, but she had the heart of an angel and was fabulous with him.  One year of kindergarten, he had a quality teaching team in his small classroom with very similar kids learning alongside him.

At 16, my Boy is an amazing kid who has grown so much and brings his mama so much JOY.  Yet, he is isolated.  He has clear wants for his future (being a meteorologist) which I don’t see a path to fulfilling.  Instead, he gets to collect recycling and might be able to shred paper or bag groceries. I’m supposed to be ok with that.  He will live with me until if and when we partner with other families and create supported housing.  He might live with me till I die.  Then I hope one of his sisters will at minimum take over guardianship and make sure he lives life in a way that makes him happy and as successful as he can be.

There are lots of moments of calm interspersed in our lives.  Andrew loves his stuffed bears and I finally decided that was absolutely ok.  He loves music, dancing, seeing concerts, and walking around our local pond.  He’s in a school program which is supposed to be the best in the state for transition.  Some of the other kids like him and he them.  There are beginnings of friendships with same-aged peers. 

That it the calm  a mother feels.  Seeing the moments that her child with autism is happy in his own skin.  Yet, I haven’t found that overwhelming, permanent calm.  Humanity dictates that when dealing with an unpredictable disorder (and my kid is kind of unique even within the spectrum), you become a survivor.  I don’t want to be a warrior and be angry- I’d love to be calm all the time.  In reality, I hold onto faith that my son will be a happy young adult and even happier adult, despite the bumps on the road.

Calm? No.  Accepting? Yes.  Confused? Often.  Loving? ALWAYS.

Wednesday, February 25, 2015

The cycle of DV- not wanting to be right

In the cycle of domestic violence, the most repeated mantra of EVERY professional is the following: what he did to you, he did before you to someone, and he will do after you to someone else.  It happened before. The actions may vary, the timeline could be months or years, but an abuser (unless they get intensive help and getting help involves admitting you need it) will always be an abuser.  Whether that abuse is physical, emotional, or serves to isolate, it's not okay.  I vividly remember ignoring my friends, who wondered why I wasn't spending time with them, returning their phone calls and emails, and had let this guy take away a big part of who I was.  I remember not feeling very happy once the "honeymoon phase" ended.  My friends saw it- I wish one of them would have tried more forcefully to shake some sense into me.   When I did take time to see others during a time I had typically spent with him, he wasn't happy about it.  My birthday was the first time that happened;  other occasions followed.  (I also have a disturbing recollection of flowers being cut off their stems when he was angry, along with a long litany of other things).

It's all about control; nothing more, nothing less.  He can be a nice guy, who a woman thinks she knows so well.  Nn my case, I knew him for many years, albeit in a different context.  Yet he may spend his alone time being angry and frustrated.  He then has no one else to take out those feelings on but his partner.

Eventually, her friends see enough signs that she has changed, is isolated from them, and doesn't seem happy.  Hopefully, they try to intervene and offer their support and help to get her out of what is obvious to everyone else but her is an abusive relationship.  Friends aren't deaf or blind, they will support you in getting out.  Real friends will not enable you if you choose not to leave an abusive relationship.

There's no joy in knowing others are dealing with the same types of issues I did, whether it's explaining to your kids why your ex-partner (who they loved) is no longer in their lives, or why his kids (their best friends) aren't either.... or about why Mom seems sad a lot.   Why mom's boyfriend is doing erratic things and acting weird at your house.  A child's home should feel safe and be free from relationship drama of their parent and her partner.

The lasting impact of trauma gets easier over time, but it's hard work.  All I know is tonight, because of the same person who hurt me, there is another woman suffering, maybe in the same way, maybe along with her kids.  Maybe she doesn't even realize it.  When you love someone, you don't want to believe they are capable of hurting you, cutting you off from your life as you knew it, or telling you to say or do things which paint someone in their past in a negative light.  It's a sort of attempt to use you as a beacon of vengeance.

I didn't want to believe this person would do this and, years later, it still stings.  One of the reasons it hurts so damn much is that there is not closure in that kind of relationship- you never know what happened or why,  if he ever loved you at all, or if he was just using you to hurt someone else.

My thoughts and prayers go out to women who have left, or who have been left by, their partners, the final act of a relationship which had become violent and/or controlling, something that didn't feel safe or joyful any longer.  Break-ups in general suck.  What makes leaving an abuser feel exceptionally painful is that it feels like it is all your fault.  After all, it takes two adults to stay in any relationship and there are reasons people stay which make sense in the here and now, but not in the rest of reality.

Lots of healing can be accomplished by letting in good friends, family who love you unconditionally, and by relying on whatever faith you practice.  After all, it takes a village to raise a child. We single moms are the leaders of our families, and we need to accept the care and support of people who love both us and our kids.  I shed a tear today (ok, more than a few) for the strong women who chose to leave.  And maybe, somewhat selfishly, a single tear has been shed from my eyes because I no longer feel so damn alone in this experience.

There's nothing more I want to say.  I saw him, with my own two eyes, do it again to someone else.  It sucks to be right

To learn more about domestic violence, a good resource is the book "Why does he do that?" by Lundy Bancroft.

Monday, February 23, 2015

To share with our daughters and friends

The stronger we can instill a sense of self-worth into our daughters....the sooner the abuse will no longer be taken. We stay because the pain and disbelief of what is done to us "every now and then" is less than the pain of ugliness and self-hatred.  We stay because the threats are as real as the noses on our faces.  We stay because someone told us that was all we would ever be worth.  We stay because when we think about leaving, we conclude that being hated "once in a while" is better than feeling alone with who we are all the time.

I stayed.  I stayed long enough to be pinned to my queen-sized maple slat bed by my first abuser, my husband, while our 4, 6, 7, and 9 year old children watched from 3 feet away.  They saw him place a pillow on my face to try to stop me from breathing; they saw him squeeze my neck.  They saw him rip the phone cord and outlet from the wall so we couldn't call for help.  He yelled, calling me vile, vulgar names, and left.  Never again did he enter our home as part of my family.

The good news is: we leave because people believed in us and said they would help us.  Ironically, those people can turn out to hurt, too.  We leave because our children deserve to see mom happy and not crying. We leave because even though we don't think we can really make it on our own; there is someone telling us "YOU CAN". 

Maybe we as a society need to open our eyes a little wider to recognize an abused woman.  She can be poor or rich, have dark skin or light, have two college degrees or be illiterate.  Domestic violence doesn't discriminate.  And say those words she needs to hear..."You are better than that"!  It is too heavy a load to carry. We are not to blame for another's anger; we are not to blame for another's abuse. 

We are, however... survivors.  We are mothers;  albeit ones that carry those hurtful words and deeds done to our bodies and our minds, forever.  To love someone who hurt you, don't ever expect to hear those words that you think will make it all better: "I'm sorry."  Don't ever expect the opportunity to tell your abuser you forgive them.  And never expect that they will know you have loved them.  Yet... who are we not to forgive? 

When you move on, take a breath.

I stayed- twice.  I made the same choice, with different men- twice.  The second time, it was about control and manipulation, how far he could stretch reality to suit his needs.  His wife, a friend, had an affair for many years, and he wanted comfort.  I was full of kindness and comfort and had a copious supply of tissues.  Truly, he managed to prey upon every weakness, blame me for everything that went wrong, and continue unabated in his desire to have it all or nothing.  Verbally abusive to his own ex-wife, in front of me, my kids, and their kids, I tried to stay out of it and shield the children.  Violent first to himself, a black eye given to him by him, with me being asked to support his cover story of falling off a bike.  This was a mere two months in, while still being gentle and kind to me, he was angry and inflicted pain to his own face with his own fist and objects which left bruises.  

I did what most women would do, I felt bad for him.  I wanted to soothe him- to fix him.  I supported him, trying to make everything better so he wouldn't feel pain, wishing I could lessen it or even make it disappear.  As a result of me doing that, he had put me where he wanted me, devoted to making him happy.  Then, he began dictating who I could see, when to see them, and threatening me when I didn't play the game his way.  The real abuse and control, as I recognized it, began.  My dear friends, long time and even lifelong friends, recognized it, too, and tried to gently persuade me he was not well, not doing right by his kids, himself, or me.

He plays a high-stakes game now, and he achieved "check-mate".  (Update: Today, he lost).  The emotional abuse continues unabated.  My kids see it, my friends see it, my church(es) saw it before I gave up on God.  Most importantly, I see it.  I wish other people who should see it could see it, but the spell he casts is a powerful one because he can appear so charming and warm.  It's hard to criticize anyone else for falling for it because I fell for it, too.  

I put my blinders on and get through each day with dignity and grace. 

I've learned many lessons; for myself and for my family who needs me.  My girls love their father, who they saw hurt me.  They once loved the man who hurt me afterwards; they see the pain he still causes my life, 8 years after I last spoke a word to him.   It breaks my heart to know, in and of itself, that makes them more susceptible to choosing to be with a partner who abuses them.  They've seen the fall-out.  They still live it.  It has colored their childhoods a messy posterboard of dark and mismatched fingerpaints.

I will never, ever make the same mistakes again and pray my children don't make them even once.  Life will never again be the same, even trying to move on has created completely unexpected complications because of Mr. Wonderful. But it can be different and filled with Joy.

I have no solutions or words of wisdom.  Be safe and choose to be in places where you ARE loved for you, and not because what you can do can help someone else fulfill their own needs or wishes that have nothing to do with you.  Value yourself and know he values you.  If he doesn't, do what I never did have the strength to do-  realize you deserve more and better and LEAVE.  Be gentle to yourself.

Wednesday, February 18, 2015

Something's working

I admit it.  I'm ashamed that I never thought Andrew could have real friends.  I've never been so happy to be so wrong. 

Given the boy I live with and almost single-handedly raise, the boy I have seen go through the whirlwind ups and downs of autism, I wondered if my Andrew would ever have the capacity to connect with peers.  The bears and Peanuts gang made me skeptical.

When he was in the world's worst private day school (they don't make kids do work), most of the kids were so different and completely disinterested in him. Before that, he was at a different collaborative, with severely aggressive and behavioral peers.  There, restraint was commonplace. Not really his peers. 

At the private day school, two students (of the 22) threatened to kill him.  The school said it was because he was annoying.  No only was it a bad school, he had no peers.  The one student he enjoyed was removed from hanging out with him.

The last time I saw other kids truly like Andrew and engage with him, and he with them, was back in kindergarten.  Young children don't judge, they accept.  The little girls especially enjoyed playing caretaker.  Oh how I loved preschool.  There were birthday invitations received.  As any mother can attest, receiving invites to birthday parties is a BIG sign that kids accept a classmate.   

There was nearly a decade of no birthday party invitations for Andrew.  Thank you, K, for breaking that cycle.

In the middle of this school year, Andrew started a new collaborative program, LABBB.  It's ironically housed at my former high school.  His class is full of what I affectionately describe as "his people".  Even though he is one of the lowest functioning students there, the kids enjoy him, tolerate him, and try not to get too annoyed when he asks repetitive questions.  

These young people make me smile.  Andrew's teachers and staff seem invested in his success and truly care about him.  He participates in recreation activities like bowling and outings to the Celtics and Enchanted Village.  The kid has a more active social life than I do. 

Andrew has one particularly neat peer, a boy whose family we went out to dinner with tonight.  Unless you have a special needs child, you can't fully appreciate what a normal dinner out encompasses.  This was awesome.  Normal, with no judgements.  My daughter came and even she loved hanging out with A's classmate and his brother (also on the spectrum). 

My boy has a friend and his friend is lovely.  I have hope for Andrew's future and his ability to relate to people.  It's truly hard work for him, but I know his life is filled with more possibilities than I have imagined. 

Here's to hope.  I hope I'm wrong about a lot more :-)  This boy is going to prove his mother wrong. 

Thursday, January 29, 2015

His Community- and Mine

The day after the Blizzard of 2015 brought 29 inches of snow,  Andrew and I ventured out for a rare “mom and son” lunch date.  He was content, in his unique way, making happy noises and eating with some quiet prompts from me (“put your napkin on your lap”, “you have to put the fork in the meatball while you are cutting it with the knife”, “is your chair pushed in all the way?”). 

It’s obvious he has autism.  For the most part, the people in his world are kind to him.  As we walked out into the parking lot, Andrew skipping and vocalizing, another boy approached, walking towards Mario's.  He appeared about Andrew’s age and was also with his mom.  He was autistic and, just as obvious, he was very happy.  An autism mom can spot a fellow autism/special needs mom a mile way; she and I passed each other with friendly “hellos”, a nod of understanding, and knowing smiles.

She is one of my people, those in this world who I feel comfortable with, sometimes without even knowing.  The acceptance of autism in our community is not as enlightened as I would have hoped it would be in 2015 when Andrew was diagnosed in 2001.  For the many kind folks who accept Andrew and don’t really think twice about his stereotypical behaviors in Market Basket or while walking into the mall, there are those who stare and make fun of him.  Recently, a local teen and her friend called him a retard and pronounced him “funny to watch because he’s so stupid”.

I may often sound confident, and even look it, but it's been a lonely road.  Single parenting a child very affected by autism is rarely easy, but has these wonderful moments of joy, too.  Mostly it's a winding path...

You can’t fix stupid- or ignorant.  Andrew is learning and growing because people around him care about his success.  He has started bowling one afternoon a week.  He’s gone to a Celtics game and out to dinner, all with the recreation arm of his school programming.

For the first time in many years, he really wants to have friends, yet he is still learning how that process works, how to be appropriate with other kids, how to take another’s perspective, and, most painful, that most teenagers aren’t enamored with Build-A-Bears and Snoopy.

The old adage of “if you’ve met one person with autism, you met one person with autism” rings clearer than ever.  Seeing Andrew with his classmates at lunch in the school cafeteria, as I was secretly thrilled to have to opportunity to do, painted a new canvas of the life of my boy.  He has, finally, has found “his people”.  These kids sat together, talked a bit, yet were all more interested in their food than chatting about the weather or Patriots.   School "lunch bunches" be damned, the boys focused on eating, making a few comments here and there.  They were also HAPPY.

Andrew now has peers who he connects with in small ways.  He is working on making more meaningful connections as he learns HOW to.  These teenagers are part of his community. They might even be his friends.

The mom in the parking lot is part of my community.  The parents waiting for their kids to come home from a Celtics game which celebrated Best Buddies, or the Enchanted Village, with this fabulous recreation program.   Parents who have walked the path for years, who are confident in their child and their parenting of him to bring him out to lunch, a place where in reality  people might stare.  We moms don’t care.  We want our children to experience the world- and for the world to accept our children.

Community.  It’s something Andrew has become a part of.  As an added bonus, it’s something his mom found, too.... when she wasn’t even looking.  More importantly when she didn't even know she needed it.  This mom is so proud of her Boy.

Friday, August 30, 2013

Beautiful girls

Last weekend, Jenny Edwards took some beautiful photographs of the girls (and even a few of me) one late afternoon at Horn Pond, a local treasure.  No PhotoShop, no frills.  Rather, jeans and tees, minimal make-up, great light, mostly happy kids, a patient photographer, and some fantastic luck.  She captured my girls and their unique personalities beautifully.  

Next challenge:  How to get a picture of all 4 children?  That might require two miracles: a cure for autism and one for sibling-squabbles.

Enjoy the images of my beautiful girls, readers!

E, almost 13, grade 7

S, age 11, grade 6

J, almost 16, grade 10

Jenny Edwards can be reached at

Thursday, July 18, 2013

An adoption reflection: From where I came to who I am

I am not an adoption blogger.  I have not strived to be a human being who dissects her life based on my first seven months of life, the cumulative effects of those, and existing as an international adoptee.  In retrospect, I've not given them the roles they deserve by acknowledging how they have shaped my life as a whole.  It's never been forefront in my thoughts beyond what I think are the typical loss and abandonment stuff most adoptees probably think about when they are feeling down.  Yet, now, I see my adoption as a puzzle, one which affects so many differences pieces of my existence, my thought processes, my values, and my parenting.

In addition, life parenting a child with autism and parenting in general, along with a slew of other joys and challenges, has certainly been enough to occupy my little part of the blogosphere.

I was given up.  For good or for bad.  It is what it is.  The first experience in my life is that I was given away.  The good is I found my way to Mother Teresa's orphanage in Kanpur, India.  I don't know anything about it, but I'd like to imagine it was a place where babies were held and played with, not where they were kept in their cribs 23 hours a day, the only toys ones hung on the wall.  (My adopted sister lived in *that* kind of orphanage, as did kids I work with now).  I have this fantasy that nurturing women, likely nuns, held me when I cried, played peek-a-boo, laughed when I made a funny face, or tried their dardnest to make me laugh when I was on the verge of tears.

What I also DO know is my given name: Shantini.  Folklore says this is the name my birth mother chose.  (My adoptive parents kept it as my middle name).

I also know one more fact:  I arrived here as a baby, adopted by white parents into what was then a *very* white community.  This leads me to say with certainty: I am the whitest brown person you will ever meet.
Naturalization Day... clearly I was impressed.

Sure, there were the Indian meals my adoptive mother tried to make, the Indian dance recitals and cultural festivals we went to, and the one or two sets of Indian or 1/2 Indian/1/2 American couples my parents knew and we socialized with.  I once was given a sari- I think someone once helped me put it on.  I loved to watch my friend S perform beautiful, classical Indian dancing.

But, I never went to "Indian School" like all the other Indian kids did.  I was disconnected from the culture.  For this good reason, it's still quite foreign to me.

There were definitely attachment issues at play.  With my adoptive parents, with extended family, then with men I dated, and finally, as a mother.  In a nutshell, it's hard to trust when you've been abandoned once (and I can't go to that "happy place" of "Isn't it wonderful your birth mother gave you up and brought you where she did?"). 

It's why relationships with my children, and parents, require a lot more effort - and skills I even need to work on.  Trusting someone is going to be there, as the child or the parent, when you been through abandonment is not something I'd wish upon anyone as it's a challenge.  My children mean the world to me, but this "tween/teen" thing may just do me in in a quicker, more stabbing fashion than autism.

Then, there's dating.  It's amazing I got married and had these beautiful children.  I trusted that vow was forever and no one was going to leave or "check out" of the marriage.  It's awful to think, more or less write, but sometimes I wonder if I got married because someone loved me unconditionally.  Me, this not-so-attractive brown person in a very white world, was worthy to a few people.

And then, there was me.  A caretaker by nature, someone who not only loved being part of a family, be it a home unit or a church family.  I truly enjoyed my female friendships; what I gave to and got from them.  

Then, my marriage ended, along with the "happily-ever-after", something we both hold responsibility for.  

So, what did I do?  I got involved with someone just as lonely as I was, even for similar reasons.  He had the same personality and make-up of my husband.  Both very nurtured and loved by their (biological) parents, there were no abandonment issues with either of these men.  I again fell, willingly, into that warm, enveloping feeling of being loved and taken care of.  I don't know how that feels for anyone else, but for me, someone who had been abandoned, it was the safest feeling *ever*.  Forget the physical and emotional attraction and/or compatibilities, I was with someone who did the opposite of abandon me.  He protected me and said he was never going to leave.

Well, that fairy-tale didn't have a "happy ever after ending", either. (You know, Patrick Dempsey in Ever, Ever After is just a nice, juicy fantasy).  What I may have correctly originally perceived as care and commitment I believe was real.  What ended up just as real was a lot of control towards me.  I was used to being in control; I was running a household of four young children.  I was not used to being controlled.  And I was *petrified* of being abandoned again.  It was like turning into that scared little girl I must have been at some point.  Yet, I was a grown-up, with children to raise and other people's children to help care for.  For these moments of joy with him, and many moments of joy with all the kids, there was this insecure piece of my heart which didn't want to be broken, no matter the cost to my person.

So, being the responsible adult I was, I tried to juggle and exist in that "happy" role.  Then, the facade started cracking.  On Christmas Eve, kids away at church with another parent, the best birth control of a tubal ligation in place, I got pregnant.  I  ended up in the unenviable position of being the one to consider giving away a child, abandoning him or her.  The other two choices (parenting or termination) were not real options those first few months.  And then things went terribly wrong.  The pregnancy ended in a way I won't ever write about here.  That was another loss, alongside that relationship.  Trust= absolutely shattered.

How much does being an adult adoptee filter into the lens I see parenting through?  More than I thought.  My children have their own stories to tell, different from mine in many ways, and they've experienced a different type of loss: divorce.  What I strive for is to give them the reassurance they are loved unconditionally.  (This doesn't always mean I or others like what they do, nor should it).  But I will never choose to give up my child, or give up on my child.

My ex-husband taunts my core belief that it's important to me to have a village surrounding my family.  Maybe he's right, as many in that village (I think of our long-term church family) simply disappeared after our less-than-harmonious divorce.  Yet, my friends have gone off in different directions, too.  I don't fit in to the "mommy" groups, married women who balance kids, typically hard-to-manage husbands, and households, if not work, too.   I don't neatly fit into the "autism group" stereo-type as I am a strong believer that there is no vaccine-autism link, but I am also not a card-carrying member of the "neuro-diversity" club, either.  The latter is because my son evidenced delays almost immediately after birth, the former because he is not high-functioning and I doubt will ever be able to speak about "Autism and What it Means to Me".  Or even define it in an essay.

Ironically, my son is the one person on Earth I doubt will ever choose to abandon me.  My daughters, collectively, resent him and what his autism has taken away from their lives.  My ex-husband has never accepted him for who he is, and therefore can not manage to care for him for any extended period of time.   Finally, that baby that never was born, who would have been born with genes from two parents who hold autism in our genes, lives in my heart.

I think about Mother Teresa often; more often I think about going back to India and visiting the orphanage.  Yet, if it is not what I expect, that idealized image of care and joy ingrained in my soul non-existent, my heart would break.  It would be easy to say "who cares" about any of this?  The past is the past, that book has already been written.  I can only someday write the chapters of the book that have yet been lived.

Living without an identity IS something I haven't thought about very much.  But, upon reflection, it absolutely is something which contributes to the fibers of my soul, my thoughts, and my choices.  As a woman.  As a parent.  As a partner.   As a professional.

That is the truth.  For some reason I can't pinpoint, simply writing about it makes it hurt a bit more.   Writing about it, however, takes away a lot of the shame.

Author's note (7/21/13):  There is quite a miraculous and intense footnote to this post.  Thanks to social media, connections were made, one incredibly meaningful.  I haven't processed this enough, and my thoughts are too jumbled to coherently write at this point  Two final thoughts:  1.  Never lose hope. 2.   Miracles apparently do happen with one just finding its way into my life.

Sunday, May 12, 2013

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, 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, but 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.

Wednesday, January 2, 2013


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.

Saturday, December 22, 2012

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 debateI profess, as I always have, that no one needs to own an automatic rifle for self-protectionThat 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 

Sunday, December 16, 2012

Spin hurts

One of the unfortunate results of a tragedy like the one in Sandy Hook is that the media spins it into whatever it wants.  There is enough real grief and suffering to not have to embellish and dramatize.  Yet, somehow, this has turned into yet another "autism causes"/"autism is caused by" story.  As a mom, as an advocate, as someone who has seen real mental illness in children and in adults, I don't buy the media spin.  You shouldn't either.  Autism doesn't cause violence.

I know the gig.  Many children have mental illness.  Many can not get the help they need.  Some don't get the services because their parents may not advocate for them, because they don't know how or don't want to because wanting to means accepting there is a problem.  However, I suspect the vast majority of loving moms and dads of kids with mental health needs try like hell to get them the right services.  It becomes a mighty tug-of-war:  the medical community and insurance company say it's the school district's responsibility, in turn the school district says it's the medical community and insurance company's responsibilities.

But what the hell does it have to do with autism?  This young man who shot up a classroom of first graders may or may not have had special needs, autism has been mentioned.  I am here to tell you having autism does not equate with being violent.  Many kids on the autism spectrum have "behaviors"; many carefully measured.  Some kids have meltdowns.  Some kids are obsessed with violence.  But, the children with autism I know are some of the most sensitive I've met and they tend to shut the world and other people out.

Here in Massachusetts, a high school student with Asperger's Syndrome killed a classmate a few years ago.  Awful.  Sad.  Tragic.  It turned out he was moved from an appropriate school program (ie: big $$$) to a cheaper placement.  Saved the school district money, let them argue that inclusion was his least restrictive environment, obviously convinced his parents of the same.  The results weren't good.

People can do horrific things.

I hate violence.  I despise guns.  I don't like to watch scary movies.

But, I'm not normal in my dislike for all things violent.

We live in a society which celebrates violence.  Forget video games (which my kids don't play), look at what teens (and tweens) are most obsessed with in pop culture:  The Hunger Games.  I know they all claim it has grand meanings and parallels to today's world, but all I see is a warped story of kids killing other kids.  Graphically, with people cheering them on.

My autistic son has tantrums.  He has received mental health treatment in the past, specifically for the severe dysregulation autism and his neurological system bring him.  But, he doesn't go with me to shooting ranges.  Heck, he doesn't play with GI Joes.  My son plays with Build-A-Bears.  He wants to be a meteorologist.  He has amazing savant skills with calendars and numbers.  He has empathy and knows when to give a gentle kiss on the top of my head when I am frustrated or sad.  More often than not, he now says he is sorry when he has done something to cause upset.

I don't know anything about Adam Lanza.  I know my son and his story, along with the stories of many kids I work with, coupled with the up-close view of the adult mental health system I got a few years ago because of a friend.  I do know autism is confusing and complex, has no known cause, and no known cure.  As well, I know it doesn't pre-dispose anyone to getting weapons and killing 27 people.

My heart and prayers go out to all the victims and their families, to their community, and to every school teacher who has to walk into their classroom tomorrow morning and teach kids who very well may be afraid this could happen to them.  I also know the pain this causes moms and dads, to see such horror, and then to have to talk to your kids about it, so they hear it from you and not a seat mate on the bus or classmate in the hall, or even in a conversation in the packed mall corridor. My kids are old enough to have those conversations and I am cynical and wise enough to know if I didn't talk to them, others would.

I understand this is completed unrelated, but my daughter turned 4 on September 11, 2001.  The shock and horror I felt that day, and in the days following, is what the past few days have felt like here.  But, media, please leave autism out of this.  Please focus on gun control; for the love of God, can someone tell me why anyone *needs* an assault rifle.  Our founding fathers didn't have this in mind when the 2nd amendment was written, did they?

Hold your babies tight tonight.  And, remember, if you've met one child with autism, you've met one child with autism.  Each girl or boy has their own unique challenges.  I can't control Andrew's diagnosis, but I can change what he is and is not exposed to.  I also know he is a gentle, kind, sweet and funny soul a lot of the time.  No one can convince me his diagnosis makes him more likely to want to hurt people.

Choose your words carefully and remember the "spin".  Sex sells.  Violence sells.  The more outlandish the news, the more people who will tune in.  At this point, I'm not sure fact and fiction can be deciphered when discussing  the person who committed this heinous act of violence.

Be well, friends.  And, give your babies another kiss before bed.