Autism: Little Victories

IMG_1723Bean is supposed to be on a charter bus right now, on his way, with the rest of the 5th grade, to the Baltimore Aquarium. He’s not. He’s laying on the couch next to me, reading a chapter book, and idly watching a small votive candle I let him light on the coffee table. When he’s off kilter, having a small candle lit seems to help him focus.

Yesterday was an Autism Sucks day. Sure, they’ve been a part of our lives for a long time, and it does seem like we have fewer and fewer as the years plow onward- so when one hits, it’s almost harder, because we are reminded, painfully some days, that Autism doesn’t go away, there is no cure, and it’s something he (and his family) will deal with forever. In light of that, here’s a bit of sunshine for those of you in the throes of a young diagnosis, or with children who are high-functioning but who are still struggling with basic skills: it get’s better. It does.

As Bean’s gotten older, with years of OT and PT and intervention strategies behind him, and despite days I felt bereft of hope, it has truly gotten better. Those painful early years of therapy, early-intervention, and hard work will pay off. How? It paid off for our family last night, and I have hope in ways I never could have seen when he was younger.

I spent the afternoon at the elementary school, in impromptu meetings with the principal and Bean’s SpEd team. Yesterday was a catastrophically bad autism day, and we were all meeting to dust ourselves off and figure out a plan to move forward. Bean’s team is imperfect, and there are people I would wish to swap out if I could, but as a whole, they work hard to help him and meet his genuine needs, while not enabling incorrect behavior. Despite having a terrible day, the principal green-lighted him for the field trip to Baltimore, and with her encouragement, his aide moved schedules around to accompany him.

There are a lot of variables on any field trip, but adding in a child with autism in an immersive, general-educational environment, with all the chaos, disorder, and openness of 30 kids in an Aquarium, and it’s…tense. I appreciated the teaching team’s willingness to add his aide, and to take extra precautions in order for him to be with his class— these are all wins for the Special Education system and the people fulfilling IDEA for children like Bean.

But…

When Bean has one of the now-rare bad days (and if you’ve got a kid with autism, you know what I’m talking about) there is something like an emotional hangover everyone suffers. It’s emotionally wrenching and physically exhausting to have a melt down, and he usually sleeps a lot afterwards, while everyone else puts the pieces back together. When he was younger, he was oblivious to how he affected others, but as he’s gotten older, that’s changing.

Last night, when Jon and I sat down to talk to him about the pending trip to the aquarium, he surprised us. He said he was worried it might be too much, and after thinking about it, and following such a hard day, he felt the bus ride and the commotion of the aquarium might make it really hard for him to stay calm. This is the very first time he’s shown this level of self-awareness, this ability to see what might be obstacles in front of him, and name them. It’s also the first time he’s willingly offered to give up something he wanted to do— he really loves aquariums.

It’s a fine line between avoidance, or letting him retreat to safety, and realistically acknowledging and avoiding circumstances that wouldn’t be good for him. I’m not sure exactly where that line is on this situation, but the fact he addressed his own needs for the very first time, and then was willing to stay with his decision was huge. He wants to go to the aquarium as a family, and he knows he’s going to have to complete a separate project for his teachers.

I’m really proud of this boy. It gets better. It does.

Modern Family

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For the last ten days, my ex-husband has been here. Yes, here, at my house. At my house with me, my three kids, my wonderful new husband, and his kids visiting for dinner. This folks, is an iteration of Modern Family.

It’s been a little surprising how many people have expressed discomfort or even shock that we would welcome my ex-husband into our home. I’ve talked about this with Jon, and with my ex-husband, and with my mom- we all kind of shrugged and looked bemused at each other. David and I have been divorced for five years. But even before that much time, I tried everything humanly possible to let him be a healthy part of the kids’ lives. Once he had fulfilled what the courts asked of him, I made a point of meeting him halfway on every effort he made. It wasn’t (and still isn’t) about me- it’s about three kids whose lives were irrevocably changed, and my (our) responsibility to those children.

No matter how good a mother I am, no matter how good a step-father Jon is (and he’s fantastic), there is a space in my kids’ collective hearts that cannot be filled by anyone but their father. I owe it to my children to do everything I can to give them access to that space. My life didn’t go how I had hoped it would. So what? I could have held onto bitterness and resentment, punishing David for being the vehicle that crashed into my dreams- but ultimately that would have harmed me, and eventually crippled me. I would have been left allowing the actions of another to define the contours of my life. The story of my divorce would have been the story of who I am.

The thing is, when you hold onto bitterness, resentment and anger, it corrodes you from the inside out. When you constantly pick at wounds and scabs, you’re harming yourself, scarring your body and mind far more deeply than the original cut. This is why forgiveness is so vital. Forgiveness isn’t about telling the person who hurt you that it’s all good— forgiveness is about acknowledging something painful happened, that people hurt each other, that misunderstandings happen, that we are all fallen and in living life, we will both cause and receive hurt. Forgiveness is saying “I will not allow things past to define my future.”

One of the hardest things I have had to do is welcoming David into Little House for the holidays the first year after our divorce. It didn’t matter at all that I was still angry, that I was still smarting and hurt. What mattered was he was willing, and my kids needed to see their father. He didn’t have a place to visit with them, and instead of punishing him (and my kids) for that, I opened my door to him and had him for dinner. Then, after dinner, I stepped out for a few hours to run some errands and let him stay at my home with my kids.

Cut to this week.

It had been more than two years since my kids had seen their father. When he finally called and said he was ready to visit, I didn’t focus on what he hadn’t done- I was happy for my kids that they would get to see him. We set the guest room up, bought him some Coke Classic, and went to the airport. It was a quiet week, with a few side trips to see some DC museums and sights, but mostly he just hung out at home with the kids, playing games and watching movies. He and Jon got along fine, and they watched Monday Night Football and a few games of the World Series together after the kids were in bed.  They’re not going to be fast friends, but there is a mutual respect. David is humble- he knows how fortunate the kids are, and he shows gratitude for me and how I’ve parented, for Jon and how he loves us, and for the kids and their forgiving hearts.

The kids got to see all three of their parents acting like parents, and they blossomed under that love. They saw their father show up, and do what he could. They saw their step-dad welcome their father into their home. They saw us all laugh and joke and tell family stories. They experienced a big family table composed in ways not previously imagined, but overflowing with safety and comfort. They know their home is a place of love.

If you have an ex-spouse over whom you are nurturing resentment and anger, over whom you are allowing lack of forgiveness to define your new life, please step back and shift your perspective. If your ex-spouse loves your kids, honors responsibilities, and shows up— it’s time to get over yourself. Spouses divorce each other- they do not divorce the kids. Had I allowed my anger to control my children’s access to and perception of their father,  I would have been accountable. I would someday have had to stand before them and explain why I privileged my passing bitter feelings as more important than their relationship with the father. That is not mine to violate. I couldn’t do that. Not ever. Allow the other parent to be a parent, and do so without hating them for how they disappointed you. That has nothing to do with the kids.

No matter how well you think you’re hiding it, if you haven’t forgiven, if you are saturated in blame and anger, the kids know it. They can see it and they can feel it. If you can’t forgive for yourself (I know that space- it can take time, but the effort is so worth it.) do so for your kids. Eventually you will start to believe you’re worth healing, and then miracles can and do happen.

The Handbasket is Empty

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One of the benefits of having lived so close to the edge for so long is that I don’t take a damn thing for granted. I know what it’s like to be facing losing (and then actually losing) my home. I know what it’s like to lose a loved one to addiction, to parent alone, to be afraid, to be facing homelessness, to be dependent on the charity of others. I know the sting and humiliation of throwing my lot at the mercy of an overworked DSHS caseworker in hopes of receiving aid. I know what it feels like to have our names on paper ornaments on the Giving Christmas Tree, where a “Boy, Age 8″ would like some Legos and a coat. I know well the spaces inhabiting our periphery, the margins of our lives, where we all hope to never go, and where hope is all you’ve got if you get there.

So when people talk about the state of the world, of the decay of society- it baffles me. The talking points and even the themes I hear sometimes at church and from the news networks just don’t fit with my lived experience. Contrary to the obtuse bloviating of pundits and doomsayers, I don’t see the hand-basket to hell overflowing- as a matter of fact, I think it’s nearly empty.

Whichever direction you face, you can see people doing good in the world. It would be hard to look past the good being done, it is so pervasive.

In my own life, despite the challenges and sometimes near catastrophic consequences of agency, there were mechanisms and safety nets and hands outstretched waiting to help. I lost my home, but I was able to uncouple myself legally to protect myself and my kids. My children’s father was swallowed by addiction, but there were laws, judges and courts to assure my children were protected AND that their father was protected- from himself and from doing further damage. Addiction is a nasty beast slouching around the land, but there are programs and therapies dedicated everywhere to slaying him. Yes, I was suddenly impoverished and without any child support and no hope of receiving any- but there were welfare programs in place for people just like me. Yes, it was hard to navigate some of it, and it’s difficult to prove qualification- but there are people who dedicate their lives to protecting the poor and needy, and do so without great financial gain themselves. I couldn’t provide gifts for children at the holidays, but how wonderful there are people who care enough to make sure children like mine are not forgotten. I was able to qualify for low-interest student loans and get an education, so I would be able to remove myself from desperation. Yes, work was required of me, but it was work I could not have done had there not been help available. My pride? Obliterated. But also obliterated was any notion or lingering idea that the blessings of any life were somehow owed or earned. “There but for the grace of God go I” is more than an idea.

Pulling back from my personal experience, I see these acts of good expanding, like a beautiful fractal, in the world at large. There are people working all over the world to help and aid the disadvantaged, whether it’s engineering systems of waste disposal in Central America, or digging wells in African villages in so families can have potable water.  There are programs everywhere, addressing every corner of need. NGO’s work to increase access to education for girls in central Asia. There are micro lending programs to help women start small businesses in order to support their families. Homeless shelters and rehabilitation programs can be found in every urban area. Organizations provide malarial nets to curb the devastating effects of mosquito born illnesses.  Children with disabilities who were once written off as expendable now receive therapy and IEP’s and attend classrooms where their needs are not only met, but their lives are expanded and they contribute to the world.  Cargo ships and airlifts of food, medication, and aid workers pour into areas devastated by natural disasters. Doctors, nurses and other healthcare workers dot the globe working to vaccinate and eradicate childhood diseases and mortality.

It doesn’t matter if this feels inadequate- to quote Mother Teresa of Calcutta, “What we do is nothing but a drop in the ocean, but if we didn’t do it, the ocean would be one drop less than it is.” We are imperfect, and there is grace in our imperfection.

People care. People are willing to extend themselves perhaps more so and with better results than at any time in history. It wasn’t so long ago that the poor were considered expendable. Children were sent to work in coal mines or worse, women could be legally beaten by their spouses and couldn’t vote or get an education, and human beings could be bought and sold as property. These things are, of course, still happening in pockets of the globe- but human consciousness and concern is eroding those spaces, like water over stone. I submit that we are more aware of the plight and pain of our brothers and sisters, and willing to do something about it, than at any time in human history.

There is more to do. Ever so. The work will never be done- but I find awe and beauty in the actual actions of so many of my fellow humans, willing to leave their comfort zones and challenge their assumptions, and to roll up their sleeves and get to the real work of a life worth living.

Birthday Fairies and Other Magic

Abby came tumbling downstairs this morning, then visibly deflated when she walked into the dining room. “Mom!! The Birthday Fairy didn’t come!”  She spun around in her kitty-cat nightgown, hair all cattywhompus from bed, her face a creative mix of crestfallen and worried.

Poor sweetie. It’s my birthday… It never occurred to me to decorate for myself last night, the way I do for my kids on their birthdays. It’s a longstanding tradition in my family- the Birthday Fairy came to me even after I moved out of home, until I got married myself. My mom The Birthday Fairy would find a way to sneak into my house while I was at work and decorate with balloons and streamers. She even filled one of my brother’s room with multi-colored balloons to a depth of about four feet. The. Whole. Room. My mom The Birthday Fairy was Pinterest before Pinterest was a gleam in a coder’s eye.

I’ve always done the same for my kids. The boys are oblivious, and have not much noticed what happens for me- but Abby was apparently hoping the house would be celebrating Mom today. It’s really rather charming and sweet, and makes me think I ought to be more careful talking about Santa Claus, at least for another year.

So today is October 3. Just another day on the calendar, but it’s always been special to me. I think I’m officially at the mid-way point in life. Is this what I imagined? Never in a million years. It’s a million times better. It’s a good thing we don’t really control our lives- we wouldn’t be half the people we turn out to be if we got to write the story-lines.

There’s an odd comfort and certainty in that truth.

So thank you, to those of you who’ve helped me live my story, and thank you to those of you who’ve woven pieces of this tapestry alongside me, whether it was a bit part long ago, or a constant pattern emerging over the years. Thank you for sharing in the tiny glimpses we get of magic- be that magic the belief in fairies, or in people who love us and are willing to take a gamble, risk their hearts, to show it. Today…. today, life is good.

Photo on 10-3-14 at 1.42 PM

For the record, I got my hair cut today, but I did NOT dye it red. So far, Tracy: 1, October Compulsion: 0. May it ever be so. I may look like a dork, but my hair is fabulous. Priorities, darling.

Writers Block

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As the house quieted and giggling children slowly settled into gently snoring children, Jon asked me why I wasn’t writing anymore. Curled in my vintage thrift store chair nestled in the corner, book folded in my lap, I idly fiddled with the velvety fraying threads on the edge of the arm. Sea-blue and leaf-green brocade, perfect in a 1940’s home, now raveling so many years later in my bedroom. But it’s the perfect reading chair, inviting with it’s sturdy frame and soft, worn cushions, bathed in a circle of golden light from an ivory silk-shaded reading lamp. The kids fight over it— all of them— at story time. It’s one of my favorite places. I looked out the open window into the velvety blackness. “I don’t know.”

I thought I had writer’s block. But I’m not sure that’s true. I think I may have Happy Block.

Writing about hard things is simple— I tap a vein and let it flow. But writing about happy? I withdraw, tighten inside, unconsciously hold my breath. Happy is… baffling, right? I don’t know. It’s not even so much that I don’t know how to write about it- I’m still working on processing the “life” part of it, and all the changes for me and my kids this year.

I’m still working on unpacking my faith in this weird happiness. Turns out it’s not as simple as unpacking my grandma’s china, though that was admittedly an important step. The patterns and rhythms of life are startling to unfold, unfurling into something, while continually changing, is consistently tinged with beauty, if I only pause long enough and peek through my fingers to see.

Jon says, “I think you have your challenge. You’re up to it. Just write.”

I grab my computer and head downstairs. There is a flickering candle on the entry table, casting dancing elfin shadows with the welcoming scent of apple cider, and I flop on the couch. We picked this camelback sofa up from a couple on Craigslist, and ended up making friends with them. They insisted on giving us an enormous gilt-edged antique mirror that now hangs over the fireplace, which one of men declared, with an eye roll towards his partner, “It’s too gay!” We both love it— it’s perfect in the family room, where apparently Too Gay Mirrors are a fine fit. It’s been part of the transition from this being Jon’s house to it becoming Our Home. It makes me happy.

There it is again. Happy.

Remind me to breathe. Remind me that happy is okay. Kind of like a few of you have reminded me already not to dye my hair red this fall. Thanks for that, by the way. You all make me happy. And not making a horrible hair color mistake makes the world happy.

Make Myself a Sandwich

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With five kids in four different schools, it’s been a hectic fall. Five back-to-school nights, two IEP meetings (so far) and a whole host of other things that could so easily crash into our homes and invade our time and space. Abby’s back-to-school night was last night, and Jon and I dutifully trekked off to sit in tiny chairs around small desks and hear what’s up in third grade. On her desk we found a writing sample which made everything in the whole universe awesome:

“If I were invisible, I would strap a giant bee to my back and crawl around the house all day. Then, I probably would make myself a sandwich.” ~Abigail, Age 8

I’m not sure what all the teacher talked about, because Jon and I were giggling with baffled delight at this daughter. We’ve been through third grade now a combined four times, and Abby is honestly the child I worry least about (maybe I should be worried about that?). She’s a stellar student, she tutors others, she’s in the gifted program, she is a precocious delight; sometimes she’s a little bit serious for a little girl. So to see her write something so utterly whimsical and absurd just made my world better.

In other news, Bean has chosen to play the cello in 5th grade orchestra. For anyone keeping track, that means we have, at practice time in our house: A baritone tuba, highland bagpipes, a bugle, a cello and a piano. Be envious.