accepting autism

I didn't sleep last night.  Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization.  No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability.  No, it's not the worst thing in the world, nor is it something which is terminal.  I totally get that many families have more challenges to live with than autism.  It's not like Andrew will die because of autism, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids.  His autism is never going to go away.

Who knows the "whys"?  I don't.  Was it the 5 day long hellish Pitocin induction?  Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention?  Or worse, allowed him to be "screened out" of EI at 16 months?  Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade?  It does not matter.

The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.)  People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is.  He absolutely is picky, but he is also a very good judge of people.  I only want to be around people who don't judge and who love him how he is- autism and all.

This is life- it's not sour-milk-complaining.  The ups-and-downs of autism dictate what our family is able to do.  Long ago, I accepted this.  My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.

I've faced my share of challenges.  I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues.  There is not a choice but to support my son and to live with the autism.  I try the best I can.  I don't expect much from others anymore as my experience is I usually ending up disappointed.   Too many people have let me down.  More importantly, too many people have let Andrew down.  I pray that God gives me the strength to love and care for my child in the best ways possible for him.

When you can't make peace with autism

Fair warning, lots of un-PC comments ahead.

It wasn't too many years ago that I thought autism was just part of my kid and something to be embraced, just like any other "quirk".  I embraced the "neuro-diversity" movement.  This was akin to thinking that Andrew's autism was a positive gift.  Of course, this was before my kid started having violent behaviors, became completely dysregulated, and seemed to be crawling out of his own skin more often than not.

The director of a local autism resource center completely called me out when I posted some "autism is just peachy and a blessing" status update on Facebook. (The Internet- this is how autism moms connect, outside of school pick-ups and drop-offs and sitting in the waiting rooms of Speech and OT clinics).  It was a total reality check that she, mother of an adult with autism, knew so much more than I did, and she knew I was living in a deluded reality about the "gifts" of autism.

I adore my friend Susan Senator, author of Making Peace with Autism and the Autism Mom's Survival Guide.   I love that she has supported so many of us by sharing her family's experiences.  I am envious she has a supportive and loving husband who has been a partner to her in parenting their son.  But, the older Andrew gets, the less at peace I am with autism, and the more clearly illuminated the facts my life is neither particularly happy or our family balanced become.   Like 2/3rds of autism moms out there, I am single, unable to sustain a marriage or relationship while parenting a child with autism.  I thought I had found the most supportive type of partner possible- an autism sib.  He loved my kid, but more important, he understood my kid and didn't judge.  Too bad, he was unable to do either for me.  The chances of a divorced mom of 4 children with an autistic child finding love again are somewhat similar to the occurrence of flying pigs- it ain't gonna happen.

No, I haven't turned into "that mother" who puts her child on a different diet every week (although the diets seem to help *some* kids), has his body de-toxified or chelated, and gives him vitamins and supplements galore (although vitamins never hurt anyone).  I still have never played the "blame game" beyond moments of wondering what a 5 day Pitocin induction does to a baby's neurological system.  A vaccination, or 20, did not cause Andrew's autism.  What did?  Some funky mix of biology that may or may not been triggered by something in his environment is the best guess I can make.  I'm not trying to "cure" him, although I now admit if there was a proven and safe cure, I'd fight to be the first in line to procure it.

I think all autism moms are more energetic and involved with helping raise awareness when their kids are young.  I was a force to be reckoned with in the local Star Market when some grumpy old lady complained about Andrew's behavior when he was a preschooler, chastising her until she looked ashamed.  That scene repeated itself dozens of times over the years, people saying "why are you allowing your child to misbehave? He needs a good spanking" or staring.   I organized "Andrew's Team" for the Autism Speaks/NAAR Boston Walk for many years (the team raised over $35,000 in its incarnations thanks to our wonderful friends and family).

I did not want to hear the stories people with older autistic children, or acquaintances, told.  I listened to stories of an adult with autism who flicked the lights on and off repeatedly during dinner, who hid things, aggressed at his family, whose loving parents helped found an adult living community for those with autism.  I couldn't believe then that my adorable 6 year old little boy, who drew houses and towns an architect would approve of, and made the most amazing forecasts, all while having some savant-skills with calendars and math, would ever not be safe around me, or would hurt his siblings.

Then, my cute little boy grew into a strong, handsome young man.  He stopped making forts for his multitude of Build-A-Bears and sleeping on a bean bag in his Buzz Lightyear tent, using social stories with Boardmaker pictures to navigate his world and communicate his wants and needs.  He became a pre-adolescent whose sensory system (always in need of more input and welcoming of deep pressure and hugs and squooshes) went into overdrive, who screamed not because there was something pressing to communicate, but because he could not control himself.  He became a young man who lashed out at those who love him;  hitting, swearing, spitting, and even biting when he doesn't get what he wants, even when it is something I have no control over.  He complains about kids who scream at his school, yet can not make the connection that kids in our neighborhood and community look at him as the kid who screams.

Do not doubt this: I love my son and will advocate fiercely for him so long as I am taking breaths.  I will cherish the moments of connection, the snuggles he is sometimes still willing to give, and the calm that envelops him when he is engaged in preferred activities.  But, I will mourn the boy I was so convinced would "lose the diagnosis" solely with good teaching, lots of carry-over, and even more love and devotion.  Andrew is a young adult with autism spectrum disorder (PDD-NOS, Aspergers, call it whatever you want) who will need support and structure to learn, to work, and to live his entire life.  I better start channeling some of that energy from five years ago when I was raising money for autism research into creating living and vocational opportunities for kids just like Andrew.

I will have hope as Andrew starts school at Pathways Academy on Wednesday that this will be "the program" and methodology which will best meet Andrew where he is.  I'm not at peace, but I am willing to meet him halfway and try to show compassion and kindness when the neurons in his brain are not connecting and he can't do anything but scream and pace (in our house, it's called "doing laps").  It's not peace, but it is the best I can do.

An angel just showed up on Heaven's doorstep

Last night, someone who was very dear to me lost her fight with cancer(s).  Lynda was a neighbor for many years.  As well, she was part of my church family and a fellow Deacon. Recently, she insisted upon gifting my daughter with a cat-themed nightgown on her 9/11 birthday, despite the fact she was battling progressive cancer and very, very sick. This picture is of Lynda holding Julia at her baptism party so many years ago. I blogged about Lynda when she and I re-connected this past July.  We had a really special, long heart-to-heart conversation.  (It's cut-and-pasted at the bottom of this post).

Most importantly, Lynda was a friend. She was a friend who brought over a casserole (or three) when babies were born.   She was there when Andrew was diagnosed with autism, taking an especially caring role as she had a nephew who also is autistic.  When, in 2006, crisis came into the lives of good friends and my family (she reminded me just a few weeks ago that I still have her green casserole dish).  So intuitive and smart, she remembered how fragile we all seemed during that spring.  She came to the hospital when my kids was born. (Heck, it was Lynda who took me to the BI for a late-term amniocentisis to determine Andrew's lung maturity).  Lynda was "the" wonderful, non-judgmental friend who threw me a lovely baby shower in her backyard when I was pregnant with J.  At my wedding, her then early-elementary aged daughter danced up a storm at the reception.  She was a true "Angel" to my Andrew, diagnosed with autism at age 2 and in need of a 1:1 aide during Sunday School so I could get a brief respite.

Heaven has welcomed an angel, but we have lost a truly, kind, and compassionate person who symbolized grace to me.  Lynda very much wanted my daughter to come back home, and thought what J most needed was to be with her mother more than anything.  Lynda's own mother was steadfast in her love for her daughter and cared for Lynda over the many years she was sick. My heart goes out to her and to Lynda's two kids, 17 and 22.

Heaven's lucky right now.  Those of us here will miss Lynda so very much.  I loved her and didn't get a chance to say good-bye, but had sent a few emails and left a few messages on her voicemail letting her know I was thinking of her in recent weeks. May God bless her and be of comfort to her family. She was an extraordinary person, an Angel to Andrew in particular.   But, man would she be so uncomfortable hearing that word used to describe her.

Rest in peace, my dear friend.


7/26/08

A week ; a friend

Last night, I spoke to a long-time friend, Lynda, who is very sick with cancer.  She helped throw my baby shower.  I told her how sorry I was that I hadn't called sooner knowing that week after week I'd read of her illness in the church's bulletin and week after week, I did not call.  Strangely, she too apologized for the same thing. She said she felt so badly about what was going on with me, she too just couldn't call. She reminded me that one night, she brought over dinner for two families to share. She told me only now that she sensed such a disaster, that one little one was a mess and crying, and that the tensions between the adults seemed palpable. I sheepishly reminded her how much we all appreciated her casserole that night and that I still had the green dish in my cabinet. We ended our conversation with a few tears and promises to stay in better touch.

What happens when you don't nurture the friendships with the people who you care about?  What happens when you nurture them too much?  For many months, my family extended itself, becoming a family plus 4, taking care of the needs of our (then) friends who were in a crisis of which we had never witnessed before.  In reality, it may have provided the support that was needed for them, but it tore my family apart. It absolutely killed whatever vestige of a marriage I had left at that point (tenuous at best). You want to help those who you care about, who have helped you and cared about you. That's human nature and friendship.  Even in the middle of the crisis, I was taking care of 2 extra kids, plus both of their parents. I was lauded by our church and our pastor for it and hated and resented by my husband for it. What a mess.  Lynda helped a lot; others helped.  It wasn't enough; it was too much for everyone.  The village simply wasn't big enough.

Friendship, having seen it go when I wasn't ready for it to leave, is even more special and sacred because of this.  It's the one bond that shouldn't let men or other intricacies come between it. It's an amazing bond between women which I have yet to see replicated by men.

I saw something interesting on the Today Show. The "expert" said that women should not date men who don't have their own friends. The point being that the men need their own support system and it is unhealthy for them to rely on their new female partner for all support. Truer words have never been spoken.  Lynda said those words, gently as she said everything, to me over and over again.

Advice is good, healing necessary, but there is a profound sense of loss which tears at my heart and soul.  This loss hurt me, it hurt my kids, and their friendships, too. What a strange way for things to play out. And then what a sad, sad way they can just as easily all fall apart.  Thanks to friends like Lynda, any hurdle can be overcome.