Having a child with autism I imagine is a bit like living in a war zone. I wait to see if autism is going to rear its ugly behavioral head in the form of hitting, biting, screaming, or garden-variety non-compliance. In the 3 hours my son has been back from 20 hours with his father, I've been called "ugly, stupid, bad mother", been struck 12+ times, screamed at, shoved, and nearly bitten twice. The glasses have been ripped off my face, I've been scratched. Because he wouldn't do it himself, I've had to walk him into the bathroom, turn on the shower, physically remove his clothes, and put him in the shower. He's 11.5, well into adolescence, I don't want to have to do that, but he needs to be clean.
One of the cruelest things about autism is its variability. Not that long ago, Andrew was considered a relatively high-functioning kid living with Aspergers or autism spectrum disorder, depending on which clinician you asked. He had friends, or at least other kids liked him, invited him to their birthday parties, asked him for play-dates.
Now, he has no friends and kids don't like him. His best "big friend", Chip, moved away for college and grad school and, not that Chip could ever be replaced, there isn't anyone else Andrew feels so connected to. Church used to be a relatively safe place for Andrew. Now, he doesn't go, although I do think in our new church, his presence, autism and all, would be welcomed.
The anxiety and outward self-talk about hating and wanting to kill people, etc. all have made his presentation a whole lot more involved.
This morning, after a lovely church service where we were welcomed as new members, with Emily and Sarah, I couldn't help but feel at peace, knowing autism was not going to ruin our afternoon together. As we drove down Mass Ave., past the church our church is potentially partnering up with to serve dinner once a month at the Somerville Homeless Coalition, I pointed out Calvary to the kids. So much was familiar, including the people walking outside. Maybe it will work out to bring the kids, as I used to to the Dwelling Place soup kitchen, and give them some real-life experience in helping those who need a friendly face, warm hello, and some dinner. We enjoyed a nice brunch at Tu Y Yo in Powderhouse Square, coming home to a mellow afternoon for the kids and a meeting with a client for me.
Then 5:00 p.m. came and autism returned with full force. God, I am tired, physically and mentally. Andrew seems to have gotten past the point of no return with his behaviors, and it is breaking my heart. Bigger and stronger than me, it's next to impossible to force him to do something he doesn't want to do. I hope and pray those responsible for his care and programming can work together to find what will help him. Pills aren't a solution, neither is giving up an option. This child, born out of love, who I love always, even when I don't like what he's doing. I don't have the foggiest idea if or why God thought I could do this, more or less as a single mom with a limited support system. What may be limited, but is there, is patience, kindness, empathy, and a whole lot of perseverance. As awful as this is for me, I try to imagine how it feels to be Andrew, living in a world he doesn't feel comfortable in, walking around in skin which probably causes him pain.
Autism may not be cured in time to help Andrew, or the many others we know who live with it every day. I am more scared than ever about what is going to happen to him, what his life can and will be. And I feel like the world's most awful mother for writing that. May some higher power, along with the people who love him, help Andrew. #autism sucks.
Wednesday, May 18, 2011
Tuesday, May 10, 2011
Which brings me to what it is I "can" cook with talent and ease. That list is pretty limited: meatloaf (recipe-less amazingly), roasted sweet potatoes, and green bean casserole, homemade meatballs when I have the time and patience, omelettes with lots of goodies in them, one or two kinds of chicken casseroles, grilled cheese sandwiches, and tacos. The list gets even more pathetic from here on in: English muffin pizzas, noodles I just have to boil, flavored noodles from a package, vegetables that just get steamed (most often in a microwave), frozen pizza, Perdue or Bell and Evans chicken nuggets, BLT's, and the cinnamon rolls and cookies that come out of a tube. (On the plus side, I make awesome ketchup smiley-faces to go with the aforementioned chicken nuggets/tenders/strips). I don't even own a spice rack and have 4 or 5 bottles of various spices in the cabinet. That's it.
Thank goodness my children are fans of fresh produce. I should grow apple and banana trees. They like to snack on cucumbers slices, Andrew would eat tomatoes by the dozen if I let him. Hummus and pita chips are a favorite, and I can wash, cut up, wrap in foil with some garlic and butter or olive oil, grilled veges like a pro. Did I mention all my kids like salad? Emily eats spinach leaves not under duress.
Some mothers have domestic talents. I don't think I possess them in any area, although I find doing laundry cathartic and having an empty sink before I go to bed (thanks Andrea!) comforting.
Since I work a lot from home, I have improved my de-cluttering skills ten-fold. Trash/recycling day is my most favorite day of the week. My vacuum cleaner is slowly dying after just a year, perhaps thanks to our cat and the fact half the people who come over are allergic to her, or at least her hair.
Is it too late to take those finishing school classes that teach young women how to be spectacular homemakers? Probably 15 or 20 years too late. Yet, my children have survived and we are overall happy. Maybe I need to buy myself a crockpot?
Sunday, May 8, 2011
Just when you wonder if you're a good mom who is making an imprint in your child's life, he or she comes up with something like this. Sarah wrote this all by herself, she printed it out, glued it onto this morning's Sunday Globe with Kim's help, and brought it to me with a beautiful bouquet of flowers, a sweet card, and a croissant.
Mother's Day has never been the "Hallmark Holiday" for me that it can be for others. I don't know my birth mother, who left me at an orphanage in India. Nor is there an relationship with the other "mother" who adopted and then abandoned me. I am so blessed to have a few very special women in my life who have helped fill the void. The experience of being a real part of a church family contributes to the joy of this day.... so many lovely people, so much un-judging (ie: no one seems to care that I am divorced), caring during a scary and uncertain time.
All I ever wanted was to be a mom, and a good one. Being a mother has made me more tolerant, kinder, gentler, and more patient (a skill I was lacking in). I learned to lean on God during the times I almost lost Julia (she was diagnosed with mitochondrial disorder as a 3 month old). I have both leaned on God and been very angry at Her during the ups ad downs of raising a child with Autism. I was so angry with Her when I mourned for the child I lost nearly 4 years ago, almost alone. I have no idea what God's plan may be for my life and what other journeys She sees me embarking upon. Whatever they are, I will never lose sight of the fact that my children are more important than anything else. The village they belong to loves them and Sarah's letter tells me I must be doing *something* right.
Happy Mother's Day!