Life with Autism: Eligibility Meeting

Bean and his Hiding Hat

Bean. Hiding Hat, Heavy Blanket. Happy.

On Wednesday, we had the triennial Eligibility Meeting with the school district for Bean’s upcoming IEP. For those not as saturated in Special Education speak and acronyms as we are, this means every three years, an entire team tests and reassesses your kid to determine if there is continuing need based on disability for and Individual Education Plan. The Eligibility Meeting is a big deal- present will be your child’s teachers (regular classroom – CEd, special education -SpEd, and autism specialist – AS), the school administrator (usually the principal and vice-principal), a district social worker, a psychologist, the district autism liaison, the district speech and language pathologist – SLP, and the district special education coordinator. Yeah, it’s a big table, and the next three years of your child’s education is contingent on what those reports find.

This is the meeting that sets my emotions and fears on edge. IEP’s are the nuts and bolts of how we’re going to help the kid- the Eligibility Meeting is a panel of experts who have been testing and observing your kid, who have statistics, and percentages and recommendations, all laid bare on multi-page black and white stapled and collated reports. On one had, you want to hear how good your child is doing, and maybe— just maybe— they won’t need services anymore. On the other— it’s terrifying to imagine that support net being taken from your child, if the team sees things differently than you do as a parent.

I wasn’t really worried about Bean’s eligibility. We’re now nine-plus years into this journey, and while he’s doing well in so many areas, autism never goes away. Autism isn’t fixed or cured. Ever.

Understanding this academically, knowing this is a fact physiologically and medically, spending hours and hours in SpEd classes at upper college levels, being informed and well-read and intellectually understanding this concept… doesn’t prepare you for the gut-punch of reality.

Bean has autism. He was diagnosed at two and a half, and immediately started a preschool program with intense early intervention, occupational and physical therapy. He went to that school for children with autism for three years, and was then mainstreamed into a typical classroom with an aide. He’s considered a profound success of early intervention and the pathways that intervention therapy can create in young, plastic brains.

The arcs of his scores and the graphs and bell curves of his mind haven’t changed. Of course he’s more mature now, and his language skills, motor coordination and ability to express himself have all matured with him… but adjusted for his age, the reports continue to tell the same story. He’s brilliant— he scored a perfect 100% on the standardized Virginia state test, and his IQ is…high. But his ability to process sensory information, his ability to communicate and reciprocate, his ability to read social cues and navigate interpersonal relations and cope with emotions are still reproductions of the same bell curves.

Even being well educated, I had somehow hoped, just maybe, there would be a change. This is the bitter part. I know better. I know there isn’t anything wrong with him, and this is just how his brain came. And yet, there in the enormous meeting room, with charts projected on the overhead screen and with a team of teachers and specialists, hot tears sprang to my eyes, and gave lie to the notion that I had fully dealt with this all already. Hope springs eternal, perhaps, but without even knowing it, I had been hoping for the wrong thing. And I know better.

Don’t get me wrong. There is tremendous reason to hope. But the hope lies in educating others about autism. The hope lies in a team of specialists and educators who understand this, and who are willing to go to heroic lengths to make life as good as it can be for a little boy with a different way of interacting with the world. Hope lies in the fact that a boy with autism is understood now to be brilliant, and not a throw-away child. Hope lies in the general growing awareness that autism isn’t a discipline problem or caused by a vaccine or something a mother did while pregnant. Hope lies is there being colleges and companies who see the value in the autistic brain and what it can accomplish. Hope lies in Bean’s bright future, not in spite of his autism, but, just perhaps, because of it.

He doesn’t need to be anything beyond who and what he is. The tears? Those were about me, and my own human fragility and foibles. And that doesn’t help my kid at all. Thank you to all the people out there who devote their lives and educations to Special Education programs and to loving, teaching, and supporting children like Bean.

Wednesday night, he sat first-cello in his 5th grade orchestra concert. He was terrified beforehand, faced his fears, and was jubilant afterwards. Then he came home and put on his silencing ear-muffs, hiding-hat, and heavy blanket. And life goes on.


Recipe: Easy Weeknight Chicken Mole

cq5dam.web.266.354Mole is awesome sauce. Mole can be intimidating. Mole really just means “sauce” and in Mexico, mole encompasses a wide range of different flavor profiles. Outside of Mexico, it usually means mole poblano, which is a thick chili-based sauce with as many as 30 ingredients, and can take days to make. Home cooks can be intimidated by unfamiliar ingredients and the daunting task of a sauce taking so long. Enter, Weeknight Chicken Mole. This recipe originates with my sister-in-law, and is very forgiving of adjustments to personal taste. For a quick weeknight meal, make the sauce, serve it over a rotisserie chicken on a cheesy, warmed corn tortilla, and top with cilantro or some crumbly queso fresco.

Easy Weeknight Chicken Mole

  • 2 Tbsp Olive Oil, or enough to cover the bottom of a heavy stock pot.
  • 2 large or 3 small onions, diced
  • 5 garlic cloves, chopped
  • 2 Tbsp chili powder
  • 2 Tbsp unsweet cocoa powder
  • 3/4 tsp cinnamon
  • 1/2 tsp fresh black pepper
  • salt to taste
  • 3 cups chicken stock
  • 3 Tbsp peanut (or other nut) butter (but regular ol’ creamy peanut butter works fine!)
  • 3 Tbsp tomato paste
  • 1/2 cup raisins
  • 1 chipotle chili in adobo sauce (a smoked jalapeño, found with other canned chilis in most major markets)
  • 1 rotisserie chicken, cut up and skin removed
  • Yellow corn tortillas
  • grated cheese
  • cilantro or sour cream for garnish
  1. In a heavy stock pot, heat oil over medium-high heat and add onions, cooking until soft- about 5 minutes. Place garlic, chili powder, cocoa and cinnamon in a bowl to the side. When onions are soft and starting to color, add spices all at once, stirring continually for about 30 seconds until fragrant. Add broth and bring back to simmer.
  2. Add peanut (or other nut) butter, tomato paste, raisins and chipotle pepper with whatever adobo sauce is on it. Reduce heat to low, cover and simmer 10-20 minutes. While sauce is simmering, prep chicken, and place corn tortillas sprinkled with cheese on a baking sheet into a warm oven to melt.
  3. With a stick-blender, puree the mole sauce on the stovetop. If you don’t have a stick-blender, you can leave it bumpy, or run it carefully through a blender in small batches to achieve the traditional smoother texture. Be careful with hot liquids in a blender- or use your food processor.
  4. Add the chicken to the sauce in the stockpot. Turn and stir to coat all the pieces, and serve on over the plated, warmed, melty cheese tortillas. Top with cilantro, queso fresco or a drizzle of sour cream. Also always good: rice and beans.

And there you have it. It’s actually kind of shocking how good this tastes for something so quick and easily made from your pantry and a rotisserie chicken. Return and report how you like it! Thanks to my sister-in-law, Erin, for sharing this one.

Catching Up

It’s probably not possible to catch all the way up. December is half over. The days are flying by, the halls are (totally and utterly) decked, and all the running around is done. What’s left on my plate now is the good stuff… the baking, the reading, the knitting, the hanging out with the kids, the taking cookies to neighbors, the snuggling by the fire, and the deep peace and satisfaction of the coming Christmas eve— my favorite night of the year, every year, worlds without end.

Thanksgiving was a whirlwind, but a deeply satisfying and good whirlwind. We had family in from out of state, and the house was overflowing with kids and chaos and goodness. After all the years of our quiet, small family, having the rafters ringing with kids laughing and toddlers underfoot, while pots bubble on the stove with delicious recipes is all so deeply satisfying. I keep finding myself pausing, holding my breath for a moment or two. This is such a good life.


I managed to hold off decorating for Christmas until after dinner on Thanksgiving. There was a moment or two I felt like The Doctor on the verge of regeneration, I was trying so hard to hold in the gleeful joy of being excited for Christmas. I did it though. Barely. We got our first tree on Friday after Thanksgiving, and I will not admit how many trees there are in the house. Nope.


We’ve all been knitting— though I admit I have only made seven pair of socks this year, and only a few other things.


The boys were thrilled to help Jon put the lights on the house. What is it about a boy and getting on the roof? It doesn’t seem to matter how old they are, there is simply something about being on TOP of a house that an XY chromosome cannot resist. I declared the outside the realm of the men, and they made all the decisions about lights, and I believe their plans are for more inflatable things after the Christmas sales kick in. I will refrain from comment or opinion. I will. So help me…


And that pretty much brings me up to date. The kids have their Christmas concerts, tuba and cello, representing. I’m working on a new recipe to share, and Mo has asked me to make her a dragon head out of paper maché. Bean asked Santa for a giant bean bag, and Abby asked for a water cooler and paper cups, and Jon’s oldest son asked for a dinosaur tooth. Try walking through Toys R Us with that list.

Also, I advise against publicly saying you’re going to hand address all your Christmas cards with a quill pen. Not that I would know.



This is a repost from 2009. It’s apropos today, on what would have been my Grandma’s 97th birthday.

The Macy’s Thanksgiving Day parade is on the TV, as it is every Thanksgiving morning. My grandma was a firm believer in this Parade, and would even get up early to watch it live, sipping her Sanka and making me a grilled cheese sandwich and frozen red grapes. As an adult, I don’t particularly care for parades, let alone parades on tv that are spliced and diced- but it would not be Thanksgiving for me without Al Roker yelling at me and the Rockettes freezing their cute butts off while they slip around in the New York cold.

My grandma died ten years ago today. Tomorrow would have been her 92nd birthday. In my mind, this time of year has become a mash-up of traditions- Thanksgiving, family, illness, death and birthday cake. It’s bittersweet- and sometimes I have to step back and catch my breath.

When my grandma died, the phone call came that time was nigh, and I rushed from my job to the care-home where she was spending her final months. I broke several laws and ran several lights in the five-minute drive, but I still did not make it. My family was gathered outside her room in the hollow, echoing hallway and I knew I was too late.

With trepidation, I gingerly entered her room, and stood by her bed, looking at her quiet body. Gently, I bent down to kiss her soft, relaxed brow. I’ve heard it said the dead look as though they are peacefully sleeping; I don’t think so. Even without knowledge of eternal things, it was clear my grandma was gone, her spirit was no longer in her tabernacle of flesh, and I was reverently and tenderly acknowledging the remaining clay.

In the days following her death, I was swallowed in grief. When your grandma wishes for no services, no memorial of any kind, it makes processing your grief and loss difficult. For the first time, I understood that funerals are for the living, that ritual is a balm for those left behind.

The day her ashes were scattered at sea, my family walked out on the Golden Gate Bridge with flowers we had collected from my mother’s yard, and bid our goodbyes to the mighty Pacific Ocean. Watching those flowers fall forever down to the cold waves below was bittersweet. I knew my grandma was not gone, but I ached for a way to hold her close, to keep the fleeing memories from floating away like the tide.

The blessings of my faith are countless, but the one I am most grateful for is hope. Hope springs eternal. Not the waves of the Pacific nor the refiners fire can take our souls, and that family is eternal. All family. The family of man IS the family of God.

So today, while Al Roker yells at me and the Rockettes slip and slide, I feel my grandma close. My daughter, who bears her name, bounces around on the bed next to me, squealing with glee at the cartoon character balloons floating high over the streets of New York. I’m going to fix grilled cheese sandwiches and frozen grapes for my children for breakfast, and tell them stories about my grandma.

Happy Thanksgiving. And Happy Birthday, Grandma.

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.


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


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

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.