villages and autism

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

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

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

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

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

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

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

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

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

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

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