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 and ourselves....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.  We stay and we don't care of our souls and bodies.

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.  Forgive yourself and be kind to your heart.

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.  You are strong and can get through anything and rely on strength once you have done the work to heal... it never all goes way, but the act of taking back control of your life is magical and provides freedom you never thought you would get back.  Namaste, friends.

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.