Trump Card

photo credit-iboy daniel
creative commons license

Kristina Chew got me thinking today with her post on "Race, Diagnosis, and Identity". In it, she talks about her son Charlie's biracial (Asian/Caucasian) heritage, as well as his other difference, his autism. Kristina also references an article by Peggy Orenstein in the New York Times Magazine called "Mixed Messenger", which discusses Barack Obama's biracial status as a candidate, and being biracial in America today.

When Liz and I were contemplating adoption, we thought long and hard about whether to adopt trans racially or not, which race children we would accept, and what sorts of disabilities we would accept (our children, Buddy Boy and Sweet Pea are biracial African-American/Caucasian). It all sounds so clinical, cold, and calculating, but that's what the adoption process asks of you. You are forced to fill out forms stating what types of children (sex, age, race, disabilities) from what types of parents (drug abusing, smokers, psychiatric issues) you are willing to accept for placement.

I knew that kids who had been adopted often had some issues to work thru regarding having been adopted, and I also knew that kids who had been adopted trans racially sometimes were OK with it, and sometimes felt very much like outsiders amongst their own race when they grew up (and resenting their parents who raised them). I always figured that issues of race would rank high within our family as our kids grew up.

Although our kids are both black and white, I realize that in many places and situations in American the "one drop" rule applies (as long as you have one drop of black blood in you, you are considered black). I knew that even though Liz and I would try to do things to make our kids feel comfortable with their racial identities, that we would most likely not be able to do this fully, and perhaps not even well. And I didn't want to cheat our kids in this very important aspect of their lives. On the other hand, I knew that there are more African-American and biracial African-American children waiting for adoptive parents then there are minority parents waiting to adopt. Thus the choice wasn't necessarily between our kids going to an African-American or biracial couple rather than us, but rather perhaps having to wait much longer to be adopted (or not being placed at all) or being placed with us.

I also worried about how African Americans would accept us as a family. I knew that part of having them grow up being comfortable in their skin would involve us seeking out relationships with African Americans, and I didn't want our kids to see us getting the cold shoulder from black people. This, it turns out, was a totally unfounded fear. Once we adopted our kids an amazing thing happened. I have never felt anything other than acceptance (and even love) from African Americans I know.

So I guess the bottom line was I expected that issues of race would be foremost with us as a family, followed by issues with adoption. Little did I realize when I started this journey as a dad that autism would trump both of those (at least for Buddy Boy). For the last 5 years autism has made my previous concerns regarding race and adoption fall completely to the wayside. I still worry how issues of race will affect my children in the future (as well as my ability to prepare them for the discrimination that they will feel once they leave the protective cocoon of being accompanied by their lily white parents). I also worry specifically how issues of autism and race will interact in the future with Buddy Boy. One of the biggest fears I have involves Buddy Boy having a meltdown as a teenager, and being perceived as an "angry young black man" by a police officer, and being arrested (or worse) because of the interaction of his disability with his race. Orenstein in her article mentions

A few weeks ago, while stuck at the Chicago airport with my 4-year-old daughter, I struck up a conversation with a woman sitting in the gate area. After a time, she looked at my girl — who resembles my Japanese-American husband — commented on her height and asked, “Do you know if her birth parents were tall?”

While I don't think anyone should have to suffer other's assumptions about their children, given the choice of someone assuming Buddy Boy was adopted internationally vs. someone assuming he was a gang banger, I'd take the first assumption in a heartbeat.

But for the last several years learning to deal with all the myriad aspects of Buddy Boy's autism (and more importantly, fighting against a system that wanted to label him as behaviorally disturbed for education purposes rather than autistic) has consumed most of our energy on a day to day basis.

I know that with Sweet Pea we'll still have the issues of race and adoption to deal with. At 5, she's already hit us with the "I wish my skin was white like yours" plea. While I know intellectually that statements like this are to be expected in trans racial adoptions, it sure made me feel inadequate as a parent at the time. Had living in a racially mixed neighborhood, playing with the black kids across the street, having a black babysitter, reading to them about black accomplishments, going to museums, had none of this had any effect? Had we neglected Sweet Pea's development of racial identity because of our time spent trying to get Buddy Boy into (and keeping him from getting kicked out of) a proper educational setting?

I guess in the end there are different trump cards at different times. I also know that part of being a parent is to feel constantly inadequate and not up to the task.

Magical Thinking

photo credit-D'Arcy Norman
creative commons license

Recently in the Chicago Tribune a story appeared entitled "Autism and the adopted child". I have to admit the title caught my eye, as the father of an adopted child that is autistic. The story referred to a blog post by a mom by the name of "Pickel" that was entitled 'Finally My Son is..."Finding the Words" '.

I should have known that my blood pressure was going to rise as I read this story. The first paragraph starts out:

Since we adopted our son from Russia in the summer of 2005 we have struggled with him. From his fingertips to his toenails the child is a medical mystery and developmental mess.

Anyone that starts off referring to their son as "the child" and as a "developmental mess" is digging themselves a hole in my book. I understand when adoptive parents don't bond immediately with the children they adopt. But it's been two years! When will she consider him her son?

Did we have any clue when we adopted him? Sure, some. We knew he would be delayed because most institutionalized children are. However, just before he turned 3 the local school district told us that they estimated his developmental age to be between 13 and 18 months. We were floored.

Little Pickel has been diagnosed with Institutional Autism, H Pylori, Severe Gastritis, food allergies, Gross and Fine Motor Delay, Receptive and Expressive Speech Delay, Post Traumatic Stress, Separation Anxiety, and Sensory Processing Dysfunction. He has also had three surgeries; ear tubes and 2 GI scopes.

He is only 4.

Oh, OK, I get it. This is one of those pity party pieces. What she really wants to say is "Poor me! I didn't get a perfect kid. I was willing to put up with a couple of weeks of inconvenience, but not two years!" Well, life doesn't work that way. When you sign up to be a parent, "You get what you get, and you don't throw a fit" (as they used to say in my son's 1st grade classroom).

The first several months with Little Pickel were pure hell. He had night terrors that lasted 45 minutes to an hour every night (he still has these 2-3 times a week). We discovered double ear infections that resulted in ear tubes. We also discovered some creepy crawlers that made the trip home from Russia with us. They were NOT very welcome in our home.

Developmentally, he did not progress quickly. By his 3rd birthday he had only about 100 words and could not put phrases or sentences together. He was just beginning to run without looking like an otter (or falling all over himself) and he screamed at me every time he tried to ride his tricycle (because he was so frustrated).

OK. So you rip a two year old from the only home he's ever known. Talk to him in a language he doesn't understand. And then YOU get upset when he expresses displeasure the only way he knows how, by screaming. And don't forget to complain that a few bugs came home in your luggage, and that your prize son isn't quarterback material.

We tried everything for him. We rid him of his H Pylori (a bacterial infection in his gut), we removed his problem foods (gluten, casein, bananas, oats), and we worked diligently on his sensory issues. Still, he seemed locked in his own world...screaming uncontrollably when things were not right, when I would back up the car instead of go forward, or if he could not have graham crackers to ease his tummy aches.

He had orange stools up to 10 times a day, acid reflux, gas that could light the entire house on fire, sleep problems so severe he was getting close to (maybe) 5 hours of sleep a night, no social skills, aggressive behavior so severe that I had to learn to physically restrain him or get hurt myself (or worse, allow him to hurt himself), and bum rashes so horrid we resorted to Bag Balm, a cream used for milking cows.

Is there a style manual out there that sets out that in order to describe how horrible your life with your special needs kid is, you have to describe their bowel habits and how violent they are? Her son had some GERD and food sensitivities, as well as the aforementioned ear problems. So do tons of other kids. So what? There's also lots of other things that kids have. Things such as asthma, physical disabilities, learning disabilities and emotional problems. That's life. Deal with it.

So, when we moved back to Chicago in the summer of 2006 from Russia it was like a weight had been lifted. He qualified for Early Childhood, we found the Pfeiffer Treatment Center and started him on a vitamin chelation* to rid him of his heavy metals, yeast, and to balance his bacteria, and our parents were both there to help us with him.

Since our move Little Pickel has thrived. One might say he is "Finding the Words".

I have said many times on my blog, Discussing Autism, that there is no cure for Autism. Because Little Pickel's diagnosis is Institutional Autism and not organic autism, he can be "cured" and he can recover. Unfortunately, there are hundreds of thousands of children with autism who will not be cured.

Now this is why I'm writing this post. Pickel comes out and says that her "Little Pickel" didn't have autism as a result of being poisoned by vaccines (he had 'institutional autism', which is supposed to be caused by gross neglect and lack of physical stimulation, not by toxins of any sort), but she goes ahead and takes him to someone who treats him with the same hocus pocus that they would use to remove all of the "toxins" from him. What sort of "magical thinking" is going on here?Why would anyone (parent or practitioner) do that? I mean, unless you were so totally corrupt as a practitioner that you would try to sell your wares to someone when even your standard goofy arguments (your kids were poisoned by vaccines/heavy metals/whatever) cleary didn't apply. And at the same time you have parents that are clearly so dumb as to accept that even though the cause of your kid's autism is totally different, you'll still use the same goofy treatments.

However, there are some children like Little Pickel who have been cured...and they have Autism.

The documentary, "Finding the Words" is their story. It is the story of eight "perfect babies", each given a grim diagnosis of autism spectrum disorder (ASD) as toddlers, whose grieving families fight prejudice, misinformation, and despair to get their children well again.

Written and produced by Elizabeth Horn Nelson, the documentary has really picked up steam because there are parents out there like me who have hope. Horn Nelson is also the co-founder and president of the Autism Recovery Consortium and even the Huffington Post picks her up. You can view the trailer for the documentary here

I'm sorry, which is it, Pickel? That you can't cure autism, or that you can? I love it when people can't even keep their stories straight.

According to Nelson Horn in a 2005 interview, "The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''

For over a year that is how we felt with Little Pickel. Then, when we had no where else to turn we found The Pfeiffer Treatment Center and finally got our answers. They were the only facility willing to perform biomedical testing for us. You can read a very scientific explanation here.

How much is Little Pickel talking now that we did a vitamin chelation? So much so that there are times he won't shut up! (Perhaps he should try out for "Autism, the Musical!")

He is constantly chattering about going to school and how much he likes his new teacher. He sings "Twinkle-Twinkle" loud and out of key as he is falling asleep. He is finally asking questions (but everyone is labeled as a she).

And occasionally from across the room or from upstairs I hear him yell..."Marcie, come here!" in a sing-sing song voice.

Could you punish a kid for that?"

Perhaps this is why so many people fall for all of the hocus pocus "cures" that are out there. They are uncomfortable with uncertainty. They can't handle that no one can tell them a definite reason that there child is autistic, and worse, that they can't offer them a cure. So when hucksters come along with "magic pills" that will make their kids all better they jump at it. It's reassuring. It gives you hope. And when you go to the doctor's office you have a built in pity party support group, where you can all play the game of trying to top each other in the "My life is worse than yours" game.

The only problem is that it's all a big house of mirrors. And to waste large portions of your time and money on such things is at best silly, and at worst abusive to your child who is getting unneccessary and unproven treatments.

She's So Beautiful

These are the words that come out of 4 out of 5 people's mouths when they first meet our daughter, and it's been bugging Liz and I. It's not something that we think about every minute of every day, it's just one of those little things that bug us.

Why, you ask?

Well, we've asked ourselves the same question. Why does this comment rankle us and just not feel right? It's not that she's an ugly kid. In fact, she is very cute (you'll have to take my word for it, as I'm not going to post pics here that would fully identify her). She has a smile that lights up a room, and enough social skills that she could compete with a politician in working a room. And we don't dress her like she's in a beauty pageant. So what's so wrong about pointing out that she's a good looking kid?

Well, for one thing she's only 5 years old. And people have been saying this for at least the last 2 years. And I just don't think it's appropriate to talk about really young girls as "beautiful". At least not when you first lay eyes on them. There's something in the comment that just sexualizes this young child by referring to her as beautiful. I mean, isn't there anything else that you might say? Like "She has a nice smile", "My, she's well behaved", or just "Hi, Sweet Pea!". OK, so most days they'd be stretching the truth if they said she was well behaved, but we wouldn't mind.

Unfortunately, we think that that the base reason that people say this probably doesn't have to do with people purposely trying to make her a sexual object, but it's just as bad. We've come to the conclusion that people do this because we are white and Sweet Pea isn't (we are a family thru adoption-both of our kids are bi-racial African-American/Caucasian). So when people first encounter Sweet Pea being introduced as our daughter, they're naturally a bit taken back. I get that. She doesn't exactly look like us. So while they're feeling awkward they feel the need to say something nice, and so come out with the "She's so beautiful" comment.

While I don't really think people are trying to be malicious, I wonder why this particular comment comes out. I suspect that it might have to do with the "unofficial racial preference rank order for adoption", which places relatively more value (in decreasing order) on kids that are white, asian, hispanic, and finally African-American. Being of mixed race (with half being Caucasian) bumps you up a half notch. So I think a big part of this comment thing is just people feeling sorry for us that we adopted kids that were of "lower preference", and wanting to say something to make us feel better.

Thus far Liz and I just usually mumble something non-committal, and go on from there. We don't think that people are consciously being rude, so don't make a big deal out of it. We sometimes think that maybe we're just being overly sensitive, but the comment just has never felt right. So, dear readers, let me know what you think. And if you ever happen to meet us on the street, you now know what not to say.

Dark Thoughts

My blog contribution to "Blogging against Disablism" Day

Everyone has secret fears for their child with a disability. For some, it's that their child will grow up alone, without friends. For others, it's that their child will some day be institutionalized, with all the terror that may involve. For me, it's that my son will some day be shot and killed because of his autism. Or rather, because of the fact that he is autistic and black.

One of the less pleasant aspects of Buddy Boy's being autistic is that he frustrates rather easily, and responds in what are usually considered inappropriate and belligerant manners. Don't get me wrong. 95% of the time Buddy Boy is the sweetest kid you'd ever want to meet. His speech may be a little stilted at times, but he's loving, considerate, smart, and funny. He's progressed in his ability to control these outbursts as he's matured, but we still have a ways to go (and I don't even want to think about puberty).

The other day he ran off the sidewalk into the grass and crashed his bike. I had been pedaling ahead of him at the time.

"DAD!" he says, getting up. He scrunches up his face (looking angry), points his finger right at me, and continues-

"LOOK WHAT YOU'VE DONE. HOW DARE YOU!"

A few soothing words and a calm manner result, as they usually do, with a quick de-escalation of hostilities, and a response of

"I'm OK. Sorry, Dad."

And father and son continue on their way.

But every time such an episode occurs, there is a vague fear stirring in my gut, one which I don't often consciously acknowledge, it is so dark. One which tells me that 9 years from now, should my son acquire a driver's license, the following might occur during a traffic stop for a minor traffic violation:

"License and registration, please."

"What's wrong? I DIDN'T DO ANYTHING!"

"Just settle down, son."

The police officer lightly places his arm on Buddy Boy's. Buddy Boy flinches and pulls back. The police officer starts to get nervous at the large black angry teenager. He places one hand on his gun.

"HOW DARE YOU! WHAT WERE YOU THINKING?!"

"Keep your hands on the wheel".

In the moment, Buddy Boy does not process this as a command. He has just processed the request for his license and registration.

Buddy Boy's initial flare is starting to abate, and he quickly reaches for his wallet to show his license.

The reaching for his wallet is misinterpreted as him going for a weapon after being told to keep his hands on the wheel, and...

If you think this situation is far fetched, then you don't remember Amadou Diallo.
___________________________________________________________

Liz and I are parents thru adoption. We are both white, and the kids are both bi-racial (African American/Caucasion). Buddy Boy's birthfather was built like a football player, and I expect that Buddy Boy will be a big guy, too. Before adopting, I considered that one of the biggest problems that we might face was racism. By the time Buddy Boy was two and a half, I realized that his (yet to be diagnosed) autism was probably going to be our biggest challenge. Now I realize that both may interact in the future to create unique challenges.

"Driving While Black" is a well documented phenomenon, that results in more blacks (especially males) being stopped for traffic violations, and more tickets and searches performed on them. It's an expected part of growing up black in America. Even black police practice racial profiling. And it doesn't matter if you're well dressed, or have small children with you. Johnny Cochrane (O.J.'s famous lawyer) used to be an Assistant District Attorney in Los Angeles. Once, while well dressed and driving home with his two young children in the car he was stopped by the police, who approached the car with guns drawn. They removed him from the car, and it was not until they found his badge that they backed off. It happens to blacks all across America every day. I do think the police need some lattitude in pulling over suspicious looking people. But they have proven time and time again that "all blacks look alike". It doesn't matter if the black person is well dressed or well mannered. What the police see is "potential criminal".

Autism is an "invisible" disability. You're not confined to a wheelchair, you don't need a cane, and your body moves just fine. [EDIT-Please see my follow up comments in "Et Tu, Brute"] In my son's case, he is also very verbal. His speech at times is stilted, and sometimes scripted, but it takes a bit to pick up on that. And when you have an invisible disability, people don't necessarily make (or feel they have to make) accomodations for you.

Police officers are trained to control situations. They are given authority to keep the peace, and they are also given wide lattitude in enforcing that peace. Citizens, for their part, are expected to defer to the authority of the police, and resolve conflicts in a court of law. One thing that the police, in general, have very little training in is relating to autistic citizens.

As a result of this lack of training, there are way too many opportunities for misunderstandings that result in escalation of a police officer's response. Police officers are usually trained in a "use of force continuum" where they are expected to use the least amount of force in order to obtain compliance. A little less than 20% of arrests involve some use of force, and use of force is reported to occur more frequently where drugs, alcohol, or mental illness is involved. Of note, initial levels of force usually involve the "laying on of hands" in some manner on the "suspect". When an autistic person reflexively recoils from contact with someone he doesn't know in a stressful situation, the police officer is then justified in moving up the ladder of the "use of force continuum". This may involve other "non-lethal" methods of restraining someone, such as Tasers, which can very definitely be lethal at times. Anytime the officer feels his life (or other citizens around him) are threatened, he is justified in using lethal force.

I have no hope of curing racism, bigotry, or racial profiling in the next 9 years. I do hold out some hope of influencing police forces' education and training in dealing with autistics. Why? Autism knows no barriers. Rich, poor, black, white, everyone gets autism. And statistically that means that even some police officer's kids are going to end up on the spectrum. I expect that in many departments some officers will speak up, and demand proper training for their peers. One study documented that autistics were 7 times more likely to have an encounter with the police than NT's were. It's in the police forces' self interest to get those encounters right. Signs of this beginning to happen are encouraging.

For my part, I have been writing my legislators to advocate for mandatory police training in autism for our state. And one of the things I am trying to instill in Buddy Boy is compliance with law enforcement officers. I hope they listen in time.

Anticipation

photo credit Ed Wilson

We can never know about the days to come
But we think about them anyway
And I wonder if I'm really with you now
Or just chasing after some finer day. ...

Anticipation-Carly Simon

There was a lot of anticipation in the Club 166 family today. It's been three years since we've visited the kids' birthmother. Buddy Boy hasn't expressed much of an opinion one way or the other on the trip lately. Until last night, when he said he was going to give "Aunt Kelly" (what we call his birthmother) all of his money so that she could buy a house. Because she was poor and lived in an apartment, so we could buy her a house, or he would just give her money so she could.

"Um, Buddy Boy, that's very generous of you, but I think that you would really hurt her feelings if you did that. Also, just because somebody lives in an apartment doesn't mean they are poor. Mom and I have lived in lots of apartments. So don't say anything about her being poor, and I bet she'd really like it if you gave her and Jeffrey (their 10 year old biological half brother that Kelly is raising) a lot of smiles."

Liz and I have always pursued an "honesty is the best policy" when it comes to talking to the kids regarding their adoption history. Adoption has always been a part of our lexicon, and their birth and adoption stories have also often been discusssed. We've told them that their birthmother loved them, but was not going to be able to take care of them when they were born, and thus made an adoption plan for them, and selected us to be their parents. We've never used the word poor to refer to her, but somehow Buddy Boy has inferred that because she wasn't going to be able to take care of him or Sweet Pea before, and she still lives in an apartment, then she must be poor.

Liz and I were a little anxious about the trip. When we adopted Buddy Boy we agreed to what's called a "semi-open" adoption. That's where the new parents agree to a specified number of pictures/updates over a certain period of time. Our relationship with the kids' birthmother (they both have the same birthmother) has morphed into an open one, with cards, pictures, and letters exchanged on holidays/birthdays, and the one previous trip that we took 3 years ago for a visit (in addition to the time we spent together the 2 times we adopted the kids). When we visited 3 years ago it was obvious to us that Kelly payed a lot of attention to Sweet Pea, and not much attention at all to Buddy Boy (after contacting us and asking us if we wanted to adopt Sweet Pea when she was born, Kelly almost changed her mind in the days following her birth, because 'She had always wanted a girl'). We didn't want a repeat episode of Buddy Boy getting the short end of the stick.

Sweet Pea, for her part, has been counting down the days until we visited "Aunt Kelly". She has pictures from the last trip in a photo album on a shelf in her room, but she doesn't really remember the last trip (she was just shy of two years old). Last night, however, she seemed to be having second thoughts. "I don't want to go tomorrow, Daddy. It's going to take too long in the car, my legs will get stiff, and it's not going to be any fun."

"But don't you want to go see "Aunt Kelly" and Jeffrey? They both love you very much, and I know that they want to see you." [Sweet Pea gives me a sidelong long turned half away from me-I'm not quite sure how to interpret this] "Get some good sleep, sweety pie. It's a long trip, but remember there's a swimming pool at the motel. We'll all go swimming when we're there. It'll be fun." (Reminding her about the swimming pool is a cheap ploy, but I knew it would work. Both kids are suckers for swimming pools. In fact, I think they'd be just as happy for our annual vacation if we stayed in our home town and checked into a motel with a swimming pool).

The trip itself was fairly uneventful. Buddy Boy is a good traveler (riding in the car was always something that soothed him as a child). Riding in the car with both Buddy Boy and Sweet Pea for 5 hours brings the usual sibling squabbles one would expect between kids that are 7 and almost 5. We strategically put the laptop briefcase between them on the backseat as a pseudo barrier, but of course they're big enough to reach over it and poke the other one when they really want to (which is fairly often).

About half way there, Buddy Boy asked me what the red button on the dash was for (the emergency flasher button). I of course told both kids that if I pushed it, anyone in the back seat was ejected from the car (I've never claimed to be the perfect father). Buddy Boy immediately countered "You can't do that! It's against the law! Parents are supposed to take care of their kids!"

Liz gave me a dirty look and said "Kids, your father has something to tell you." "Well, it's really the emergency flasher button", I said. (Liz has no sense of humor sometimes). A couple of stops for gas, food, and bladders, and we arrived without a hitch.

Tomorrow's blog-we meet again...

Joe is on the road, eating junk food, and there isn't a scale in sight...

Searching

Sweet Pea will turn 5 this month. She's just a little over 2 years younger than Buddy Boy. She's always been a typical younger sister. Pretty much equal parts adoring, competitive, and annoying to her older brother. She is outgoing, charming, willful, has a smile that lights up a room, and gets excited and happy about ordinary things.

Because Buddy Boy gets up earlier than Sweet Pea, she goes to bed approximately 30 minutes later than he does. Our routine is that for that last 30 minutes at least 20 minutes is spent reading to her.

Lately Sweet Pea has been somewhat fixated on us reading "An American Tail, an illustrated story" for her bedtime reading. This is a big departure from her usual desired fair- children's animal fables, collections of short children's stories, and her all time favorites, Disney princess stories.

An American Tail is a fairly long (63 pages) and fairly wordy book for a soon to be 5 year old. It's long enough that we have to break the book up over at least 3-4 nights to finish it. The book tells the story of a Russian mouse emigrant in the 1880's who is washed overboard on the voyage to America, and is separated from his family. He makes it to America in a bottle, and the rest of the story is a series of adventures in New York City while he searches for, and is eventually reunited with, his family.

Both Buddy Boy and Sweet Pea are adopted. Although we have pictures of their birth parents up in their rooms, occasionally send or get a card from her birthmother, and visited their birthmother once about a year and a half ago, Buddy Boy hasn't expressed more than a passing interest in his being adopted. It's harder to tell with Sweet Pea. She talks about her birthmother more, but it may be because Sweet Pea is more interested in the whole pregnancy/birthing process right now. When Sweet Pea mentions that she wants to have a baby, we start our mantra- "First you have to go to college, then you have to get a job. Then you can send your parents to Hawaii. :) Then you can get married if you want to, and then you can have a baby".

I've been wondering if Sweet Pea's interest in An American Tail is rooted in a vague feeling of abandonement because of adoption. My reading tells me that kids this age wonder what they may have done to make their birthmother not love them or want them. I also wonder if she feels the burden yet of being "different" from her peers in pre-school, because of her having been adopted. We talk about her adoption story, and reassure her that she had nothing to do with the circumstances that led up to her being placed for adoption. We also reassure her that we will always be there for her, and that we will love her always.

But I sometimes worry, with all the energy that is taken up with dealing with Buddy Boy's autism, are we missing obvious signs of things Sweet Pea needs from us? I guess all we can do is try to pay attention, and keep on loving them both, 100%, every day.

Joe is 209

Dirty Laundry

I almost titled this post "The Good, The Bad, and the Ugly". I figured I'd link to Thursday's post for the "good", Friday's for the "bad", and today's would elucidate the "ugly". But then I thought that might be too tacky.

What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.

A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.

Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.

When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.

Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).

So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.

Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].

I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.

Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.

Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.

Joe is 210 :( :(

How much to reveal?

The question often comes up regarding what do you say about your child’s autism. To others, the child himself (I am going to use himself instead of him/herself, as my child with autism is a boy), and siblings.

My short answer is that it depends, and do what feels right.

We have the advantage in our family of not only being the parent of a son with autism, but also of being parents thru adoption. So we’ve struggled with a somewhat similar question before.

The question of what to say, to whom, and when, seems to figure prominently in discussions of autism. Kristina Chew originally named her blog “My Son Has Autism”. And MOM-NOS recently gave a great description of what many of us go thru when deciding how much information to impart when our kids are going to someone else's house. And it seems that not a week goes by that I don’t see posts from people wondering how much information to relate to people in various other situations.

Well, for better or for worse, here’s how we approach it.

For our kids, it’s easy. Like adoption, talk about autism is natural. We don’t want our kids to feel that there is anything dirty or shameful about being autistic (or being adopted, for that matter). So our natural conversation contains many references to autism, school services, social skills class, etc. Our kids will be well versed in all aspects of IEP’s, FAPE, LRE, ESY, ABA, etc. In fact they will be so well versed they’ll probably be able to serve as advocates by the time they graduate grammar school. We talk about how all people have something that makes them different, and autism is one way of being different. We also point out how being autistic can give you certain advantages in life. This can sometimes lead to interesting playground exchanges:

“I’m autistic.”
“I’m artistic, too.”
“No, I’m AWWtistic. Not artistic. My brain is different.”
“Uh, OK. See you.”

While the kids still don’t understand that they don’t necessarily have to instantly share all aspects of themselves and their family life when meeting someone new on the playground, I’d rather have that then have them think that there is something “wrong” with them.

Now when it comes to talking to others about autism and how it affects your family, then I’d be inclined to recommend letting your gut guide you.

For acquaintances and schoolmates, it seems that it’s situational. Sometimes we just say that Buddy Boy has some difficulties with social situations. Sometimes we say that he has autism and sometimes this leads to him having problems with certain situations. Sometimes (like a big picnic in a park where we run into people we are acquainted with) we don’t say anything and just wait to see how things play out. My gut tells me that I’d rather have someone get to know Buddy Boy somewhat before telling them he has autism, rather than have to overcome any preconceived notions about autism they may have.

When it comes to work, I’ve never been one to go on and on about my home life with anyone within earshot. Many people are more social than me. You have to find what’s comfortable. I do have some close friends at work that I talk to, and to those people I talk about our family life, including the fact that our son has autism. I try to let them know the good stuff as well as the not so good stuff, so they don’t get a skewed view.

In public, if we’re causing a scene (which thankfully doesn’t happen all that often anymore) it’s sometimes necessary to do just as the good Dr. Chew does, and simply start out with “My son has autism, and …”. At other times a simple “Sorry, we’re just having a little difficulty today” does the trick. I think that personally I sometimes am hypersensitive to what I think others are perceiving. If you look at NT kids in public, a lot of them are exhibiting “behaviors” at any given time. So I’ve been trying to relax more and just go with the flow if we’re really not bothering anyone else. It’s really none of their business.

So that’s it. Honesty and forthrightness in the house, and using our gut instinct and common sense outside.

So what do you do?


Joe is 209 :( too much chocolate!