10.30.2013

Next Time You're Shopping in Accra...

I really must write more about our trip to Ghana. You know, the one we took in June. One thing I will say: The next time you find yourself in Accra and in need of beautiful clothing and handicrafts, go to the Accra Arts Center and look for these two fine gentlemen:

Asamoah Jones sells excellent clothing, with a wide range of options for men, women, and children.  His shop number is #83, near the center of the main building.

Ras Emma has his own large stall behind the main building, and sells wooden and other handicrafts. It was through him that we acquired a beautiful djembe (drum) and kalimba (thumb piano). His shop is #159.

My daughter is already asking when we can go back. Soon, I hope. Though the fact that we were able to go at all makes the experience seem like a dream.

10.24.2013

Advice Needed: How to Tell a Young Adult They're Adopted

Yesterday my birth son's family contacted me and confirmed that he doesn't know he is adopted. They really don't want to tell him. The reasons are long, complicated -- and private.

And wrong no matter what, in my opinion. He deserves to know who he is. And I do not, as a friend of mine wrote, want to be complicit in his being lied to about his identity. As I told his family, genetic tests are getting cheaper all the time, and cataloguing one's own genetic makeup is very popular with college students. What if he orders one on his own, finds out on his own that his family kept his truth from him? I'm certain that would be far more devastating than learning of his adoption from his family.

They need to tell him. I'm not going to do it. I have no interest in being the person who leaks his secret identity. That responsibility lies with his family, the people who did the work of raising him, the people who have been loving him in person for 20+ years. I have no, never had any intention of, trying to make them look bad, taking their place, or trying to insinuate myself, because any of those actions are gross as well as ethically messed up.

But this was also never a closed adoption. The fact that I have been respectful and kept my distance does not mean I don't care, don't want him to know he has a whole other story that he can access any time he likes, plus a motherlode of geeks just across the Bay who would welcome him with open arms if he chose to expand (not replace, expand) his family. He deserves the option to make the choice to know us -- or not. If he just wants info, just wants to know more about his native French speaking great-grandfather or talk about the genetics of autism, I'm OK with that.

I'm worried that his parents think adoption is shameful, that knowing he is adopted would make him think they love him less in some way, that there's something wrong with him. But how could he think that, when they've been loving and supporting him his entire life, as much as any child has ever been loved and supported? He is a wanted, cherished son who was born when I was an immature young woman who knew that the best thing for him would be to live with parents who were ready and able to be his family in a way I absolutely was not. He needs to be told. And soon, before he finds out on his own.

Thing is, next steps are unclear -- which is why I'm asking you for advice, dear Interwebs. What resources should I send to his family, to help them understand why their denying his being adopted is a really, really bad idea that will ultimately cause more harm than good?

What would you do?

Six months pregnant and wearing a hat I'd
made myself. Go 1990 go.

10.22.2013

Letting Our Autistic Kids Have Chill Time

One message I think autism parents don't hear enough: it is so important to make time and space for our autistic kids to be themselves. To do what they like. To be completely relaxed and unstressed. To not have other people making demands on them (even to help them), to not be figuring out how to ask people for help so they can do what they want to do. Legitimate, unfettered chill time.

We try to make that time available to Leo, as much as we can: going to the beach, hiking, trampolining, swimming, all things he loves. But sometimes he just wants to sit down, sing, and pound on a damn ball. So he gets to do just that. And this is what it looks like:




He's a happier kid and we're a happier family-of-his when he gets time to be his own happy autistic self. Being Autistic and mostly non-speaking in a world built for non-Autistics means Leo spends a disproportionate amount of his time negotiating, problem-solving, or figuring out how to communicate his needs -- and not always successfully, despite the best efforts of his family, teachers, and friends. And that doesn't include sensory assaults from bickering siblings, clothing, or loud noises. That doesn't include all the times we've misunderstood his needs without knowing we misunderstood them, because of the communication gap -- again, despite our best efforts. His life can be fairly frustrating and anxiety-ridden. He so, so, so needs time to relax and do what he likes.

This is why I think autism parents need to be extra careful to find as many ways to understand our kids as we can. We also need to pick our battles. I almost threw my computer across the room this morning in reading an autism parent's prideful recollection of how she spent hours torturing her teenage autistic daughter, demanding the daughter wear a specific item of clothing and insisting that she (the parent) was not going to "give in to autism."

The daughter did her best, used her best words, tried repeatedly to express her needs -- and ended up in tears because of a mother who would rather impose her will and "beat autism" than understand why her daughter didn't want to wear the item. Maybe the clothing was itchy, maybe the daughter's thermostat worked differently than her mother's, maybe her personal sense of style was being violated -- who knows? Certainly not her mother, who recounted her daughter's distress and attempt to negotiate at length, while crowing about not "giving in" for her daughter's own good. I am not naming names because this parent is self-righteousness incarnate as well as an Autistic-hating repeat offender and she doesn't deserve your attention. But it's important to spread the message that "my way or the highway" incidents like this are absolutely the wrong way to approach conflicts with an autistic child.

It's not easy to be Autistic, and it's not easy to be Leo, even though in general he's the happiest and most affectionate boy I know. So, I beg you, Please don't forget how hard it is to be an atypically-communicating person like my son. Please share the message that Autistic people of all ages deserve extra time and effort to ensure that you're understanding their needs properly, even if what they're doing doesn't make sense to you, even if you think you know better, even if you think it's for their own good.

And, if you have the time, please help share the message that happy stimming is a reasonable and healthy thing.

10.11.2013

A Birth Mother's Adventures in Dreamland

I have been having extremely vivid stress-bomb dreams for the past week, the kind that wake me up with a start several times each night. Perhaps my brain has a fail safe so my heart won't explode while I'm asleep, so I can verify that no, my long-haul trucking partner Cee lo Green was not actually crushed in front of my eyes by a falling cargo container. A certain scientist friend says the dreams' intensity may be caused by the antibiotic I'm taking due to not listening to my body very well. In that case, three more days and I'm out.

Though I'll also be wistful, because occasionally the dreams are wonderful verging on wish fulfillment. As in long, thoughtful conversations with my birth son about his life and hopes and interests, after he and a bunch of his friends happened to move into the commune across the street and I brought them welcoming cookies and discovered he was there and in dreamland fashion he knew who I was just not where I was or how to contact me so it was all cool. So very, very cool.

As I do not live in dreamland, the "all cool" scenario is unlikely to happen, and reality will be more complex. But I have definitely had that young man on my mind more than ever lately as he just moved to our area for grad school. Please know I have been disciplined about not stalking him IRL, because that is creepy, and when I did have to go to his new school a few weeks ago for a lecture (we go there often, it has many public events), I did not allow myself to look up the location of his department beforehand.

Except my intellectual precautions had nothing on my visceral impulses and emotions, and the caprices of fate. From the moment I stepped on campus, my attention was drawn to every last potentially ginger student. I couldn't stop scanning, I couldn't focus, couldn't stop my heart's racing. And when I entered the lecture hall building and started walking past office doors, I realized I was ... in his department. I took deep breaths and continued to the lecture, only to find a stifling hot, crowded space with no seats -- a waking nightmare scenario, for me. I tried not to hyperventilate, but after about fifteen minutes fled to the bathroom and broke down in sobs. Not my best day. Fortunately that  scientist friend of mine showed up and dragged my sorry butt off for a stiff drink, duck fat french fries, and uni. Which helped.

But back to dreamland: My ideal resolution would be similar to the FB-spurred, heart-warming birth mother-daughter reunion recently documented in the NY Times*, in which the daughter described her birth mother as adding to her life, rather than filling some sort of need -- because she already had parents. What I do not care to do is try to lure him in or win him over, make him doubt everything he ever believed in, as in the extremely fine SF short story by Yoon Ha Lee, The Unstrung Zither.

But I do think that his mother intended for me to be a part of his life, even if just as small part, because of this letter I recently found from her, sent when he was two months old, and containing the pictures of him that I looked at every night when I fled to Ghana the first time. I am going to keep telling myself that that was what she wanted. And even if he doesn't want me to be a part of his life, I just really, truly hope he knows who he is.


Awake or asleep, I am definitely craving resolution. I have taken a small step in that direction, one that does not involve contacting my birth son directly, and will wait a few beats before making another attempt. Fingers crossed.

----

*Hat tip to Beth Arky.

10.06.2013

How Not to Write A News Article About Autism: Point-by-Point

I love my boy so much. Why don't reporters write about that?
Photo © Emily Willingham
I am tired of most media autism stories -- the negativity, the pity, the false spectrum dichotomies, the harmful and outdated "cure" angles, the way Autistic people are (mis)characterized. So when Emily W. brought today's Pittsburgh Post-Gazette story Mysteries of the Mind: Dealing with the different worlds of autism to my attention, I had to break down exactly why stories like this are so upsetting.

I have been sick for the past few days so it is not as sharp as I'd like it to be -- but the core is there -- using excerpts from the story, interspersed with my commentary. Please, reporters -- stop writing awful stories about autistic people and their families.

Mysteries of the Mind: Dealing with the different worlds of autism

Jeffrey is crying.

Why do stories about autistic people always start out on a negative and/or pity-evoking note?

Standing at the Pittsburgh Zoo and PPG Aquarium one day in May, the stocky, broad-faced 19-year-old is bawling like a toddler, which in some ways he still is.

No. He is a nineteen-year-old Autistic young man. Autism means some things are harder for him than for non-Autistic people. But he is not a toddler, not in any way. Describing him that way is both inaccurate and demeaning.

Jeffrey Maloney has severe autism. He does not speak, except for some short phrases. He is not toilet-trained. He cannot read or write. He suffers from seizures. And he is obsessed with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.

How about writing what he does rather than what he doesn't? The facts are the same in this rewritten paragraph -- except his personal hygiene should be his (and his family's) private business:
Jeffrey Malone is Autistic and has a seizure disorder. When he speaks, it is in short phrases. He has a focused joy with certain objects and activities: animated Disney movies; GeoMagnets; and quarters, which he touches and stacks and lines up in precise, repetitive ways.
His routines govern his life, and when they are disrupted -- or he thinks they have been -- he melts down, as he is doing on this warm spring day. For some reason, says his mom, Lisa, Jeffrey didn't think this was the right day for the family to be at the zoo, which is one of their regular outings, and so he was distraught.

Rewrite:
His routines are of utmost importance to him, and it is almost impossible for him to bear their disruption. When they are disrupted -- or he thinks they have been -- he melts down, as he is doing on this warm spring day...
For people with autism, even those who can speak and score high on intelligence tests, changes in their environment can completely undo them. For Jeffrey, his mom says, it can be "as simple as someone taking his glasses off in a restaurant, because if you looked a certain way when he walked in and then you changed, he does not like people to change."

Fair enough.

Two of the four Maloney children have autism. Jeffrey's older brother, Patrick, 20, has Down syndrome and a form of autism known as "pervasive developmental disorder not otherwise specified." Like Jeffrey, Patrick does not speak and is not toilet-trained.

How would you feel if you were 20 years old and a reporter told the world you weren't toilet trained? This is part of presuming competence -- behaving as though people with disabilities understand every word you're saying. Because in most cases, what proof do you have that they don't, really?

[The parents] also don't spend a lot of time worrying about that issue. "I can't say I ever thought, 'Oh no, we're not going to live the dream life we would've had,' " Don said. "I think I've always been of the opinion you play the hand you're dealt and you make the best of it."

Fair enough.

"Our life is severely impacted by autism," Lisa added. "Every part of our life -- mine, my husband's and our typical kids' -- is geared to run around what the boys need."

This is a matter of attitude, IMHO. I don't want to ding these folks too badly, because they seem to have a fairly matter-of-fact approach to parenting. I'd phrase this as "Autism is a big part of our life," but that's me. Also, every family has to make allowances for different kids' needs. That's just the way it is. Which is what I tell my girls when they complain about anything related to their brother's schedule: we all make accommodations for each other.

She said it was "a little nerve-wracking" to allow the Post-Gazette to follow her family, because "you don't know how it's going to come out in the story -- because I don't want people to think we're saying 'Woe is me,' because that's not it. You just go about your daily life and you trudge through."

Fair enough. Though I don't trudge, I alternate skipping and stomping.

Don said their decisions about having more children might have been different if Patrick and Jeffrey had been their first two. "If we had had two children with handicaps in a row, I think we would have asked, 'Should we do this again?' "

I've not seen anyone use the term "handicap" in a while -- most people with disabilities prefer the term 'disability.'

To spend time with the Maloneys is to realize that there are two different worlds in autism.

No. Autism is a spectrum. And Autistic people who can speak and write independently can be very outspoken about the pervasiveness of the disabilities they share with other Autistic people, whether those disabilities are obvious or not. They can be especially direct about the trauma of being expected to suppress Autistic behaviors.

Of course, many researchers in the field now say that the symptoms and abilities of autistic children vary so widely that we ought to be talking about several different "autisms."
Yet Autistic adults of all abilities continue to emphasize Autistic commonalities.

On a practical level, though, the picture the Maloneys paint is much different than the image people get when they see highly talented autistic people like Temple Grandin or John Elder Robison.
Among many who occupy the higher-functioning realms of autism, including those with Asperger's syndrome, there is resentment toward any talk of "curing" autism. They want the condition to be recognized as a special set of differences and gifts.

OK, now I'm just irritated. John Elder Robison and Temple Grandin are both extremely talented, and should be recognized as such. But they are also very clear about how they compensate for their disabilities. And they both had childhood trauma because of their autism. They both work very hard to help the world better understand Autistic people's needs in general as legitimate, so today's Autistic kids & adults don't have such brutal, misunderstood experiences.

As a fundraiser for Autism Speaks, whose mission statement says it is "dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," Lisa constantly hears from people who hate the term "cure."

I hate the term cure, because autism is not a disease. My son, who is a 1:1 support kid, was born autistic. That's the way his brain came. What he needs is acceptance and support and understanding.

"In families with autism whose kids do really well, they get almost angry at people who say we want a cure or want a change. I say to this one young man who always brings it up to me, 'Look: if my son could be you, that would be a cure.' "

No, that would be shape-shifting. We need to work harder to understand autistic people for who they are, and get them the support they need -- which would then benefit their families as well. Also, *cough*, eugenics.

"As a parent who has a child on the more severe end of the spectrum, I think that's a very different thing than someone with high-functioning Asperger's.

Yes, because they are different people with different abilities. But since Autistic people tend to be more similar than dissimilar, fighting for Autistic accommodations and support in general can benefit both types. Also, I dislike the term "severe" as it's not useful and automatically prejudices people against my son. When I'm feeling cheeky, I say Leo has "high octane" autism. When I'm feeling practical, I say he's a 1:1 support kid.

"I want that for my own child, to tell you the truth. I would think I had gone to heaven if my child could be an Asperger's child. But even for the Asperger's children, it's not normal. You can ask everyone to accept you for who you are, but you are not in that straight and normal part of the world."

Really? My observation has been that the Asperger's-type kids are the ones who get broken more easily by social and behavioral and sensory expectations -- because they can be included more easily, and they can "pass," and their inevitable resulting meltdowns are more likely to be misinterpreted as tantrums. This makes them also more likely to experience social trauma in middle and high school. They are also less likely to get an official diagnosis, but even when they do they are less likely to get the accommodations they need when resources are tight because the kids whose needs are more obvious tend to get prioritized.So they fall through the cracks, and they suffer. As do their parents. But now I'm falling into the trap of making comparisons, when what we need -- yet again -- is for all Autistics to get fair and sufficient accommodations.

Still, where people with Asperger's are apt to be viewed as awkward or geeky, autistic children like Jeffrey and Patrick are the object of often pitying stares.

So what? Fuck 'em, those starers. We take Leo out to every single place we think he will enjoy and can tolerate -- and we work on teaching him to tolerate other places as well. If he is no longer tolerating them, we leave. Please know that Jeffrey and Patrick and Leo have the same right to be men-about-town as anyone -- the real problem here is that too many parents have been socially conditioned to keep their high support Autistic kids home.

Jeffrey "will hit his head with his hands, or bang his head against the wall or table, or pinch himself," Lisa said. "And people will stare, and they should stare, because he's a big kid. That I can be OK with. But it's the people who stand there a long time staring that get to me."

Again, fuck 'em. I return those stares, lock-eyed and without expression. I've never had a person not drop their eyes in shame after a second or two. But my priority will always be Leo, and getting him out of a situation that is distressing for him.

One time on a shopping trip, Jeffrey lay down in the middle of a mall, "and there was a woman who just stood there and stared at us like we were the circus. Yes, look; yes, be sympathetic; but then, move on, or offer to help."

This is hard, and I get it. But the return stare does work, and it lets people know you are on your kid's side. Ignoring the starers also works. As does asking for help, surprisingly -- often people want to help but don't know what to do and don't want to intrude.

While the negative encounters stand out, the Maloneys also appreciate the people who have been extraordinarily kind and patient with their sons, whether it is the Giant Eagle employees who allow Patrick to order food from pictographs on his computer tablet, or the women who cut the boys' hair at a Great Clips near their home.

Our experience has been that most people in retail are awesome and thoughtful. We also tend to go to places where people know Leo, and have his back.

When a family has a child with special needs, let alone two, it can radically change the landscape for the remaining siblings.

Yes, Iz's soccer schedule dominates our entire family calendar. I kid, but only slightly. Again with the "we all accommodate each other." And also the "no guarantees in parenting."

For Adam Maloney, it made him grow up faster and quickly take on the role of helper to his older brothers.

This is not the case with Mali, Leo's younger sister. She is very very very awesome, but also her own person leading her own life -- and she helps the family in other ways. Iz is much more thoughtful with her brother and always has been.

"He's a remarkable child," his mother said. "Very level-headed, very responsible. Sometimes I would try to tell him, you know, things won't fall apart if you just be a young child sometime. Three or four times teachers in elementary school called me in to say, 'He's too serious,' but I would say, 'Well, he has a very serious life.' "

I really think Adam is demonstrating an interplay of personality and circumstances, and this seriousness cannot be generalized to all autism siblings as stated directly above.

His father said Adam "realized from a young age that he's got to sacrifice, and pitch in a little more, but in the long run, it's going to be beneficial because he knows it's hard for any family to function well, and he's got a basis of knowing what it takes to keep a family going."

We've worked very hard to ensure that our three of our kids get to be the kind of kids they were born to be. And all families sacrifice and accommodate, but we do not expect excessive sacrifice for Leo's sake -- because I don't think he would want that, and I don't want his sisters to resent him.

Adam helped with Jeffrey's intensive therapy when Jeffrey was young, and now, he will even do his homework in the bathroom so he can watch while Jeffrey takes a bath to make sure he doesn't have any seizures.

That is thoughtful, the homework during baths. But I hope Adam helped with the therapy willingly and was not pressured into it.

How does he feel about all this? "The No. 1 lesson I've learned is: Always be on your toes. That's pretty much the basis of everything. Everything revolves around Jeffrey, and paying attention to him at all times."

My No. 1 question is: doesn't this family have respite, and if not, why not?

And while that may seem to ask for a lot of self-sacrifice, Adam said that as a result, "I think I'm a lot nicer to people and I'm more understanding. I'm also a lot more aware of other people than some are. Even with my sister, she won't have to say anything and I'll understand how she is feeling based on her body language."

My kids, by contrast, have learned not to underestimate or avoid or be prejudiced against people who are different than them. That's why they're nicer. (Well, the girls are nicer sometimes. And Leo's just a nice kid in general.)

He also has created his own space by joining track and soccer teams in school, which allows him to decompress from pressures at home.

All kids deserve their own space. I'm glad he's found his.

"My friends will say they've had a really bad day, and I'll ask why, and they will say something like, 'Oh, my TV was broken and I couldn't watch my TV shows' and in the back of my mind I'm thinking, 'Well my brother screamed for eight hours today and I was trying to sit in my room and have peace and quiet and I couldn't do it.' Other people's problems aren't really problems in my world anymore."

Hmm. I get this, the comparison game -- I am human after all -- though we tend to try to practice gratitude for what we do have and not dwell on what we don't.  But my heart also goes out to the screaming brother, who was obviously in distress. I'd want to know why he was screaming and would be wondering -- again --  whether or not he's getting the right supports, and enough of them.

Lisa Maloney said her family life has changed how she views other problems, too."I don't feel like I get as crazy angry with people, because you don't know what they're going through. If someone cuts me off in traffic, that's OK, because maybe that person has to get home because their son is having a seizure -- you don't know."

Ha. Me too.

Facing the future. One reason the Maloneys agreed to talk about their lives is that they realize they are in the first big wave of parents whose autistic children are entering an uncertain adulthood.
[...] She is ambivalent about group living, not only because of concerns about the quality of programs that are available, but also because of her desire to keep Jeffrey and Patrick safe and happy. "One day I'm thinking I'll never put them anywhere, they're going to be with me until the day I die, and then another day, I'll think 'Oh, this is not fair to them or me or anyone, and we're going to start making a plan about where to put them.'"

Yes, I get this. [updated to include the following two sentences, my oversight] But there is no "first big wave" of Autistics entering adulthood. Autistic people have always been here.

As they try to see the way into their future, the Maloneys also try not to burden others with their present. "People in my family comment all the time, 'Oh, you just handle it all so well,' " Lisa said, "and we do trudge through it, but I don't go into my office and say I've been scrubbing poop for four hours, or if I get into my office and my boss says I thought you were going to be here at 8:30 and it's 10 to 9 and we have to go to a meeting, I don't say 'Well, I had to get the last load of laundry in or we wouldn't have had clean sheets tonight.' "

I don't appreciate being lauded for being Leo's parent either, nor does my husband (we have two other kids, after all). What child doesn't deserve their parent's very best? (And to trust them not to talk about their bathroom habits...)

"No one would ever say to me, 'I wish I could wake up in your life,' " Lisa said. "But I think a lot of people would like the relationships we have in our family unit -- and it is because of the boys."

This is a better note to end on than most autism articles, though the compliment to their boys is rather backhanded. And I don't want other peoples' lives either -- too much newness to muddle through. In our house, anything different is bad. But we're still a mindfully happy house, and I do wish reporters would write more about families like ours, and not project pity-based media stereotypes on us.