"Is Your Son Really That Difficult?"

Photo © Merrick Brown
at Flickr

That's what the well-meaning blinds salesperson who just left my house asked me, after I told her I was leery of installing vertical blinds in our family room -- mostly because I was worried Leo would love them to pieces, quite literally.

I launched into kind-but-firm on-the-spot advocacy and acceptance mode. I didn't cry (something I might have done in the past) or get strident (something I am still working on). Instead, I smiled to show how much I love my son, and let her know that she was misunderstanding my concerns.

I told her that I wouldn't call my son difficult, but that his autism means he sometimes has difficulty reining in his impulses. So even if we asked him to please not wrap himself up in or set in motion a great big set of swinging, clanking, flapping blinds, he might not be able to resist. He would likely see them, as he does in most doctors' offices, as more fun than any plaything on this planet. And he might pull them all down, in his enthusiasm.

It's not that Leo is difficult -- it's that I know what can be difficult for him. Why would I put him in a difficult situation, when it can be avoided?

But as we also like to give him opportunities to prove himself, we will probably get one tiny trial section of vertical blinds for now. His ever-increasing maturity may mean that blinds-play has become passé. (Also, we have to do something, as all our floors and bookshelves and furniture are getting bleached to hell.)

The salesperson seemed to get it. She nodded, and said that what I told her made sense because "we all make allowances for each other, especially as parents." Indeed.

I wish more people were so easy to reach.

For New Autism Parents: On Gratitude

Leo's passed the eleven and a half years mark. I feel like I'm finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary "easier" alternate reality society thinks I'm supposed to pine after. This means I think a lot about the information and attitudes I'd have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.

And that's silly -- neural enhancements aside -- because instant downloads do not equal instant attitude adjustments. There's often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I'm going to dole out some perspective, and attitude.

I think a lot about gratitude. Appreciating what I have -- and I have a lot, as does autism parent Marie Myung-Ok Lee. Appreciating Leo and his sisters for who they are. Thinking about what we do have, what we get to do (see local hike photos below), and recognizing the poisonous futility of dwelling on what we don't.

Leo does love benches along the trail

It's understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it's often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.

Early evening summer hike

A frivolous example: I can't take Mali to this weekend's Mary Poppins singalong because Seymour will be out of town, Leo wouldn't like the decibel level or chaos, and I can't justify a babysitter (Iz is hitting the back country trails at high Sierra camp for two weeks). I'm bummed, but I also accept that parenting in general means not doing a lot of stuff I'd rather do. Missing a movie is no different from the hours I spend not-having experiences and options because of the choice I made and time I put into to being a parent. Yet I'm encouraged to chuckle over and commiserate about typical parenting drudgery, while anything having to do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for his sisters.

Manzanita berries

Is parenting Leo different than parenting his sisters? Sure. Are parts really damn hard? Sure. Is parenting him harder than the unfixabilities of raising a neurotypical child who cannot retain friends, or who gets pregnant at fourteen, or who is an ungrateful, entitled, unapologetic, dismissive jerk? Now that I've been doing this for a while and we have defined our own happiness, I don't think so. I look into my beaming, affectionate son's eyes -- they are gorgeous -- and wonder, why is anyone supposed feel sorry for the two of us, in our contented companionship? I'm grateful that this beautiful boy is my son.

Poison oak can be beautiful, too

I suspect some of the pity we get ladled with has to do with communication. Leo's is atypical,  speaking and articulating are a challenge. But as I watch multiple marriages flame out around us -- many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues -- I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He's not much for abstract concepts, but he's present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?

Found structures along the trail

I wish I'd known how important gratitude is, earlier. I wish I'd had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

210° panorama from the hike's hilltop. Embiggening encouraged.

We've been fortunate enough to find those communities, and for that and for so much in our lucky, lucky life -- I am grateful.

Choosing the Cheat Sheet

I recently had to write two documents summarizing my Leo.

One was a testimonial for the local regional center, as they want to reduce his respite hours by two-thirds. If we are to avoid that cut, we needed to detail just how difficult Leo makes our lives. This writeup, though brief, was a painful exercise.

The other document was a "Leo cheat sheet" for the school we're hoping Leo will attend in the fall. Leo is going to tour the school tomorrow, but before then the school staff wants to know what Leo's like, how fantastic he is, and what his strengths and challenges are.

The thing is, both the testimonial and the cheat sheet are 100% true. Both of them. But the former is a negativity distillation, the second is a loving, pride-filled declaration of Leo as a whole.

I could choose to live my life as though the respite testimonial was my only reality as Leo's mom. But that would be a lie. I have a choice. And I choose positivity, I choose honesty, I choose to see the best in my son.

We all have that choice.

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RESPITE TESTIMONIAL

Leelo is a sweet boy with autism who unfortunately cannot be let out of visual supervision at any time, and needs active monitoring during his waking hours to keep him from injuring his sisters, soiling himself, or destroying household property. His current allotment of XX hours per quarter reflects this need. A reduction to XX hours per quarter would cause hardship for our family.

Currently we use Leelo's respite hours for activities that are challenging or impossible when Leelo is at home, such as:

1) Housework/laundry
2) Making homemade meals instead of purchasing them (latter is much more expensive)
3) Attending church
4) Spending one-on-one time with Leo's two sisters, who are otherwise in perpetual duck-and-cover mode.

Leo is currently at Loma Prieta, a segregated County elementary school site for children with severe behaviors. We are in the process of transferring him to The World's Most Fabulous Autism School, an even more restrictive site, in part because their student population includes children with severe behaviors up to age 21. This will help with the long-term management of Leo's behaviors in a school setting, but not at home.

Leo's behavior has warranted a Behavior Intervention Plan for the past four years. I have attached the most current version.

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LEELO ROSENBERG CHEAT SHEET

PERSONALITY AND PREFERENCES

Leo is a sweet nine-year-old boy who laughs easily, especially when people engage him.

• He loves music, "scatting" and having people imitate/engage him, stories with repetitive rhymes, "dancing," paging through books, simple puzzles, playing on his iPod or iPad, swimming, straws, hiking, and jumping on trampolines
• We call him "The Cobra" as he is very wily and will quickly steal other peoples' food or straws. Beware!
• He likes to eat: vanilla yogurt, PB&J sandwiches, croissants, pancakes, fruit smoothies, cheerios, Burger King french fries, apples, and bananas. He enjoys Pirate Booty and Goldfish crackers but they give him indigestion except in limited quantities. We try to limit his sugar and chocolate intake as both are overstimulating. However he loves any kind of pastry or cake.
• He is very smart when it comes to routines whether through instruction or observation; once he learns a routine he rarely needs prompting unless it is a less-preferred activity.
• Leo can attend to tasks for up to 20 minutes.

LANGUAGE

• Leo has good receptive language, especially with requests involving objects (e.g., "Dude, your shoes need to go back in the closet"). However he is not yet typically conversational, and struggles with abstract or non-concrete topics.
• Leo's expressive language is mostly requests (he speaks “fluent requesting”), descriptions/observations (“India is crying”) and responses to direct questions ("The circle is … blue."). He is currently in a period of echolalia, which we suspect is helping him process language.

ACADEMICS

• Leo knows the names of all letters, numbers, shapes, colors, etc.
• He can recite numbers past 20 in sequence. However 1:1 correspondence is an ongoing challenge.
• He can read his first and last name, and a few other words
• He can write "Leo."
• He can type in his first and last name and other personal information.
• He is spectacular at sorting/categorization/matching.
• He enjoys doing jigsaw puzzles.
• For further information, please see his IEP documents.

SELF-CARE

•  Leo can dress himself from head to toe. He sometimes puts his clothes and socks on backwards, but will adjust them correctly if his error is pointed out.
• He does not wear clothes or shoes that require buttoning, tying, belting, or snaps. He is working on mastering zippers.
• Leo wears underwear and can use the toilet completely independently. At school he may need reminders to:

• Go every hour
• Stand up to pee
• Wipe adequately if wiping is needed
• Flush toilet
• Wash hands
• Straighten clothes afterwards

• He occasionally has accidents when he is stressed, however other accidents are generally intentional/an escape technique. Again, they are rare.

MOTOR SKILLS

• Leo does not yet have the fine-motor skills to manage zippers, buttons, etc.
• Leo can hold a crayon/pencil and write his name.
• He is an absolute expert at navigating on an iPad or iPod.
• Leo has very good gross motor skills. He is good at climbing, running, swimming, and jumping, and has excellent balance. He can ride a tricycle and a scooter. 
• His upper body strength is not as developed as his lower, and so he needs to be encouraged to hang from bars/trapezes, etc.

CONSIDERATIONS

•  Transitions can be difficult. Both verbal and visual cues/reminders are helpful. Leo is a pro at using an extensive visual schedule.
• If Leo is upset, he will hit his own head. Sometimes if he is really frustrated he will push other people. Reminding him to check his schedule or distracting/redirecting is usually helpful.
• Leo is currently taking the medication Risperdal to help manage his aggressive and self-injurious behaviors.

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The photo above is Leo at the Monterey Bay Aquarium, in a mood. He's not always smiling. And that's okay, neither am I.

Parenting Should Come With An Unbreakable Vow

Today's a BlogHer post day. I wrote The Worst Parenting Day Ever? about how attitudes affect parenting, exemplified by how I chose to perceive a day with my son.

The BlogHer post was also written as a reaction to an Age of Autism bitter, rage-filled account of what a parent considers autism to have done to her daughter, and her own life. The parent wrote,

"[My daughter] is dead. That [girl] is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now."

The empathetic BlogHer part of me first cheered for the daughter who can talk now, then wanted to hug the mom in so much pain. I want that mom to meet people from parenting communities like mine, so she can observe real people who have carefully maintained their and their children's dignity, even though like her they have parented through situations most people won't willingly contemplate -- including having their children with special needs actually die. That mom needs to hear from, learn from parents who believe in sanity-saving catharsis between friends, but who remain otherwised focused on loving, respecting, and helping their children. Let's cross our fingers that she soon finds the hope and compassion she so needs to change her attitude and let herself love her daughter.

The lioness-mom part of me -- the one who writes here in my personal blog -- was disgusted by the post, and also at Age of Autism for further corroding that mom's soul and undermining her emotional stability by publishing such child-abusing vitriol as "honesty." How DARE such people call themselves autism advocates, sell themselves as helping our children! Who and how exactly is that hatred supposed to help?

By publishing a post in which a parent declares their autistic child to be dead to them, Age of Autism has disrespected our children and indeed anyone with autism to the ultimate degree. They have outed themselves as the Vampires of Despair, whose only interests are bleeding the autism community to sustain themselves, and luring converts to their distasteful mindset by whatever tactics necessary. This is exactly the kind of cultivated nastiness recently decried by Orac at Respectful Insolence, who writes of such attitudes:

"It is a view of autistic children that dehumanizes them. They are portrayed as "toxic," "damaged," poisoned," and "lost," among other things, with stories of the "light going out of their eyes" after a vaccination."

The Age of Autism author -- who received kudos galore from parents only too glad to spew additional negativity about the children who depend on them -- says she doesn't care if people hate her for saying that she considers her daughter to be dead. I wonder if she realizes that those haters may include her own two typical children, who will likely one day read what their mother has written about their sister; and her daughter with autism, since people with autism are often more aware of what is going on around them than their communication skills reveal. What if that not-dead girl eventually reads what her mother wrote about her? (Though I hope it never happens; I hope AoA pulls a Generation Rescue and scrubs the offending material off their site.)

Reading the My Daughter is Dead post made me wish that parenting came with a legal vow, or an Unbreakable one, based on a common marriage vow:

Do you, [parent], promise to love, respect, and protect [this child], in good times and in bad, in sickness and in health, so long as you both shall live?

I consider this vow to be implicit, a reminder that as in marriage, no one can anticipate the joys or challenges parenting will bring, or guarantee perfection. The parent who wrote the Age of Autism article needs to disengage from the vampires, find a more positive community, revisit her parenting priorities, and remember that protecting one's children includes protecting them from the worst of one's self.