Thursday, July 14, 2011

I hate you, now take me to the mall

Teenagers.  Autism.  Which one is more challenging? And let's not even go there- "there" being that I will have an autistic teenager under my roof in a year's time.

People keep recommending the book titled in this post.  Barnes and Noble here I come.  Teenagers are people, too.  They deserve respect.  I get that.

I am, however, a fairly newbie at the "parenting a teen gig" and my hair is quickly getting grayer by the day.  My teen seems to have the ability to control her actions, including those which annoy the crap out of me.  In contrast, my kid with autism doesn't seem to be able to control all his actions, so maybe it is a tad easier to accept those. 

This blog tends to be about the not-so-normal (like autism) parts of my life.  Now, I am probably going to be writing about what everyone goes through (and I hear survives)- raising a teenage girl without fleeing to a desert island or putting her on a plane to a similar place.  Wish me luck.  Lots of it.

Monday, July 11, 2011

A very smart nun once said...

"People are often unreasonable, illogical, and self-centered.  Forgive them anyway."
-Mother Teresa

Someone shared this with me tonight and it hit a big nerve. Beyond the obvious (obvious if you know I lived the first months of my life in Mother Theresa's orphanage in Kanpur, India), it holds meaning and advice that most of us mere mortals should recognize and follow, but don't.  Having myself been guilty of all 3 of the above at various times, I certainly hope people have forgiven me when I have behaved badly.  At some point, you have to work, and I mean work hard, to forgive if you have any hope of moving on.

People wrong each other all the time.  Families fight, couples bicker, people get into random tiffs with fellow customers at the grocery store or with a manager at a restaurant, yet we all move on and get up the next morning because we have to, not necessarily because it's always easy.  I have always had great admiration for couples who live by the mantra of never going to bed angry with one another.  As anyone I have ever been in a relationship with can attest to, I could never do that.  I could, and should, learn that skill if I am ever blessed enough to be in a safe and loving relationship again.

In a strange somewhat related twist, on an autism list I belong to, a single mom posted about her challenges with dating while parenting a fairly young child on the spectrum with intense needs, and the fact she wasn't sure her boyfriend could handle her devotion to her son (he wasn't sure, either.) Knowing many married moms are in this particular group of parents, and as a divorced, single mom,  I decided to reply, touching on my own experiences. The thoughts flowed to my fingers as they touched the keyboard, with a fair amount of tears streaming down my face. (Ask my kids, I cry at the end of every movie- I wear my emotions on my sleeves).

I dated someone who seemed to fit the bill perfectly, if the bill were to read as follows: "Single mom seeks partner who intimately understands autism and knows how to interact with a child with autism". (I wasn't seeking, but that's a whole other story).   He is the sib of a brother with pretty severe autism, now of course a grown adult, and had lived "it" his whole life, until he went off to college and then moved across the country.  But, not necessarily because of my child's autism, I had moments of being illogical, unreasonable, and self-centered in the context of the relationship.  He did, too.  Yet, he met the four criteria I required of a partner: great emotional connection/friendship, great physical connection, shared spiritual values as we had gone to church together for years, and, last but not least, acceptance of my son and his autism, but also acceptance of me as the mother of an autistic boy.  My son loved him.

Yet it is exactly the traits Mother Theresa spoke about which still, years later and not proudly on my part, at least, leave both of us bitter, angry, and still emotionally involved.  I mean that in the sense that I know he still checks up on me, reading my blog, trying to "one-up" me by making claims that aren't true, knowing my schedule and rather boring life by asking  mutual friends and acquaintances or, and this is the worst, calling names.  I still have these random moments when I remember something exceptionally good about our time together.  There are the equally random moments where a total stranger calls me asking about him because of events in his current life.  (That's happened no less than three times in the past month alone).  My kids still see his kids around where we live.  We still drive on the same main roads and pass each other.  Yet, because we act illogically, unreasonably, and are self-centered in some ways (including not being able to fully own our own mistakes, that's something I've been able to do, at least, but he hasn't), the relatively brief romantic relationship of one year, which developed after 8 years of friendship, still stings to this day.  We still seem to cause the other enormous amounts of pain.

Therefore, in responding to this mom, conflicted about how to date with a little one with autism and wondering where her loyalties should lay, I shared that, for that year, I tried to balance both, the relationship and the autism.  In the end, I failed miserably at both in different ways.  I lost someone who I was very much in love with and who I believe loved me, and I lost my way in advocating for what my son needed, at a time (remember, his parents just split up and he was now trying to figure out why mom had a boyfriend and why dad had a girlfriend and why he had two houses) that was challenging for him.  In the end, my inability to be both the partner I wanted to be, the mom I knew I could be and wanted to continue to be, the stress of raising three spirited girls, and trying to keep us in the only house my kids had ever really known, just broke me and my spirit.

I give huge kudos to those parents of children on the spectrum who have managed to stay married.  I have ginormous respect for those in particular whose marriages have remained strong, loving, and happy.  Of course, there are all of two couples, both friends who moved cross country to the West Coast, who fit this bill of all the autism parents I know well, either personally or through work.  They must have learned along the way to be reasonable, logical, child-centered, and most of all forgiving.  

That Mother Theresa was a pretty smart lady.  It blows me away to know she probably held me in her arms when I was an infant.  I will work on the forgiving piece and can only hope others work on it, too.  But, don't expect to see me on or Eharmony anytime soon.

Saturday, July 9, 2011

The gift of good food


I can't cook, at least not well.  Perhaps the only "perk", and I use that as a relative term, of having a sick or hospitalized family member is that people bring you food.  A long time ago, I learned that when people ask "what do you need?", it's best to give them a real answer and not answer with the typical passive-aggressive "we're fine" or "whatever works for you".  I have a bunch of kids, so people to hang out with them is always a welcome offer.  Food is accepted and appreciated, despite the ironic twist that my best efforts for my friends who have just had babies or need a meal for some other reason usually involve take-out Chinese or pizza.  Sorry, friends.

Doing the work I do, I have been fortunate to meet some pretty amazing families.  Many of their kids have needs similar to my kids, so in doing my job advocating for services, I oftentimes know intimately what these kids and their parents lives are like.  While boundaries have sometimes gotten a bit too fuzzy, I consider many of my clients friends, especially after knowing many of them for so long.  After all, I am a long-time believer that moms of kids with special needs need to stick together because our other friends who are parents of NT kids just don't understand a whole lot of what goes on in our lives.

One of the districts I most enjoy working in is Needham. An upper-middle class suburb about 20 miles from home, I maintain a positive and productive working relationship with the special education team (and the amazing Elementary Sped Director) at one of the elementary schools.  I collaborated closely with them to find the right placement, ultimately, for a client.  This little guy has much in common with my son.  Likewise, his mom and I have much in common, including our philosophies about services and the fact we are both writers (although she is a much, much better one than I and gets paid to teach it to college students).

I chose to share my kid's current struggles with her as part of a "mass email blast" to our friends, family, and selected clients and colleagues, asking only for prayers and good wishes, sent out after my kid went into the hospital.  In response, this friend offered to cook a meal or two.  (In the meantime, her daughter offered to come and hang out with my little girls for a few hours; a huge success for all).

And cook she did!  Both the vegetarian casserole pictured above (layered zucchini, onions, tomatoes, potatoes, garlic, and some cheese) and a chick pea curry with potatoes and carrots with brown rice, are delicious and HUGE hits with my kids.  Emily is currently operating as a vegetarian (5 months and counting...) so it did not surprise me she loved the food.  Sarah, however, is uber-picky in what she eats and tends to not prefer the healthier options, and she too loved this food.

It's comfort food.  I never understood that term while I was growing up.  There was a period post-autism diagnosis where we had 4 kids under 5, a bunch of medical complications from Julia's mitochondrial disease, the aforementioned son with autism and a zillion hours of services and a many medical appointments and heavy-duty tests,  a preemie, and other stuff.  People from church brought over food often.  (My dear friend Lynda was one of them and I still have fond memories of her chicken noodle casseroles and cherish her casserole dish that we still have, since she passed away a few years ago.)  Afterwards, the givers still somewhat a mystery to me to this day, we were given a $500 gift certificate from our church to a restaurant delivery service.  People cared, and one of the ways they showed it was through providing us with meals.  But, then, I was too busy, frazzled, and probably sleep-deprived to appreciate the comfort factors of good food.

This evening, mentally exhausted from both a hospital visit and a 35 minute screaming tantrum courtesy of autism, we sat down to eat the harvest (literally it looked and tasted fresh from the garden) that my friend/client's mom prepared for us.  The tastes are different from the stuff I usually make (pasta and sauce, meatloaf, chicken, green beans, etc.), but it was so yummy.  I think I enjoyed it even more since I know it was made with love and care by a good person who drove to and from Needham, not once, but twice to enable the baby-sitting and cooking to occur simultaneously.

I know, this post is probably boring and maybe about something other people, with whole, functional extended families and better support systems, have happen all the time.  In fact, we have been blessed to be the recipients of casseroles and dinners from our church in recent months as part of their congregational care-taking ministry, all of which we have appreciated.  Somehow, today's events enlightened me enough to acknowledge that providing food is a very important type of ministry friends can provide to one another during difficult times.  I am so grateful that this village is surrounding my kids and I with a lot of love.

Monday, July 4, 2011

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.