Thursday, December 29, 2011

A Tale of Two Sisters: Regarding High vs Low Functioning

Sister A has a college degree.

Sister B dropped out after 2.5 semesters.

Sister A has a job. A good job.

Sister B is unemployed. On purpose, but still.

Sister A has a network of close friends. She loves them and they are a source of comfort. She wishes she could see and interact with them more.

Sister B has a handful people she knows and likes. She is glad she knows them and would be sad if they were no longer in her life, but she doesn't find much comfort in their company, and actively avoids socializing when possible.

Sister A likes to discuss all manner of topics with all sorts of people. She has specific interests, but happily talks about anything with anyone.

Sister B likes to talk about what she likes to talk about, regardless of what her companions would like to discuss. She becomes distressed when the conversation steers away from her own pet interests.

Sister A wishes she could find someone to love, who will love her back, and start a family with, someone to confide in, someone to grow old with.

Sister B is married, but thinks of her husband as a good friend and a good father, not as a romantic partner. She worries that he will grow to resent her aloofness and her inability to be emotionally intimate.

Sister A lives independently and employs a housekeeper.

Sister B cannot live independently for more than a month before she becomes homeless.

Sister A enjoys rich emotional dramas and understands subtle facial expressions and innuendo.

Sister B is often confused by the motivations of characters and the hidden context of their words.

Sister A is 26.

Sister B is 31.

Sister A is a wheelchair user due to cerebral palsy.

Sister B can walk.

Which sister is high-functioning? Which sister is low-functioning?

Spoiler alert: I'm Sister B.

If you saw a picture of my youngest sister, let's call her Crash, and me, you'd probably assume that the one in the wheelchair was the low-functioning one compared to her similar-looking-yet-physically-abled sister.

If your definition of "functioning" is "can walk," then yes, I'm high-functioning and Crash is low-functioning. If your definition of "functioning" is "can do math well" then we're both very low-functioning. If your definition of "functioning" is "can establish and maintain meaningful relationship," I'm clearly the low-functioning one.

My gripe with the terms "low-functioning" and "high-functioning," especially in regards to autism, is that "functioning" has no set meaning. There's no established metric to measure functioning. Usually when someone says that So-and-So has "low-functioning autism," they mean that person is probably non-verbal, maybe has self-help deficits, perhaps they lack bowel and bladder control, and/or maybe that person can't communicate his/her needs and wants.

An outsider might conclude that such a person is "low-functioning," and that an autistic who can speak, brush his or her own teeth, and ask for the things they need is "high-functioning."

Here's the trick: a number of "severely" autistic people, once given alternative tools to communicate, can eloquently describe their thoughts, desires, and needs. These people can, and have, achieved very high levels of education and professional success, even though they communicate via computer and require assistance with their ALDs (activities of daily living, like toileting, eating, etc.)

Picture Stephen Hawking. Physically, he is profoundly disabled, cannot speak or feed himself, and requires constant nursing care, yet is widely known as one of the most brilliant physicists alive. He uses adaptive technology to communicate, and does so beautifully and to the benefit of mankind.

Now picture Stephen Hawking, if he was alive 100 years ago. Would we be able to read A Brief History of Time? Would he be known to anyone outside of his family? Would he be able to communicate at all? Likely he would have been institutionalized, left to spend his days in silence, locked in his own mind. It makes me sad to even think of it, but this is the reality, in my belief, for many autistics today.

While the days of the nightmarish asylums are, mostly, behind us in America on the dawn of 2012, it can't be denied that many autistics presently are muted because they lack the proper communication tools. When these tools are provided, such beauty, honesty, and truth can come forth.

Carley Fleischman is one of those people. There are many like her. She was unable to communicate for many years, and, at 13, finally mastered her adaptive device and was able to express all that was shut up inside. Sue Rubin, the subject of the Oscar-nominated documentary Autism is a World, is another. Thanks to more accessible and affordable technologies, many children are given the tools they need to communicate with the world. The iPad specifically has helped so many autistics express themselves to others.

What does all this mean?

To me, it means the difference between low- and high-functioning autism isn't whether someone can use the toilet, walk to the store and buy what they need and pay for it correctly, or whether they can look you in the eye for more than a moment. The difference is the ability to use speech to communicate meaningfully.

I'm going to reiterate this for those of you who (wisely) skim my posts for the meat, because I think this is the most important point of all.

To me, it means the difference between low- and high-functioning autism isn't whether someone can use the toilet, walk to the store and buy what they need and pay for it correctly, or whether they can look you in the eye for more than a moment. The difference is the ability to use speech to communicate meaningfully.

When many so-called low-functioning autistics, yes, even the incontinent ones flapping their hands as they rock in the corner, have the proper communication tools, they sound just like I do. Many of them sound *way* smarter and *way* more eloquent. (Not a hard trick to do, har har.) Many of them are highly accomplished in their fields of study. When given "speech," they are as high-functioning as they come.

I mean, yeah, I look pretty with it here, on the page, but, c'mon. I don't even have an associate's degree. I can't hold down a job to save my life. I think it's perfectly appropriate to say really horribly morbid and insensitive things because they're "just facts."** But, because I look normal, and can speak clearly, I'm the "high-functioning" one. Next to my sister in her chair, I'm the "high-functioning" one. But it's not true. Inside, I'm a mess. I can *tell* you, sort of, what it's like inside my head, but often I don't know how. I present well, yes, and those who "look" autistic don't present as well. But that doesn't mean that I function better, internally, than they do.

Of course, it's absurd to say that inside every silent autistic is a Walt Whitman just waiting to come out. Not every autistic is a secret genius. There's *something* inside, though. Something unknown. Something you can't see or hear. Every autistic person has wants and needs. Not every autistic person will be able to express them, though, all the silicon in the world be damned.

I write this as I think it's really important to truly think about what words mean, and how they impact people. Calling me "high-functioning" isn't fair. It discounts my own struggles, my own problems. It puts too much pressure on me- often "high-functioning" means "passes for normal," and passing for normal takes an enormous amount of energy.

Similarly, it's even more unfair to strap "low-functioning" onto a person who doesn't communicate in the way you might expect. It ignores their strengths. It sets the bar unrealistically low and effectively shuts that person out of any meaningful interactions and education. It excludes them from their peers and sets them up to always be seen as being "less than." Maybe they don't pass as normal so well. Who cares?

Neither does Stephen Hawking, and I double-dog-dare you to call him low-functioning.

*Note: I had to consult Crash on this piece, to flesh out our differences. She said to include that fact to further illustrate my lousiness at reading and understanding other people, which I don't really understand because I think I just wanted to get my facts straight, but, as she always says, her IQ is 4 points higher than mine, so I default to her genius!

** (this is a true story) I thought it would be a good idea to suggest to poor Mr. Husband that it would be sweet of me to write a letter to my dad, in case he dies. Because, you see, even though he's in perfect health and is very young, my dad's going to die someday, and I want to make sure I say all the things I'd like to say to him before he dies. And if I happen to be present as he's dying, probably I'll be too upset to remember everything. So it makes perfect sense to write a letter now that he could keep until he's dying. Then I remembered that he could die suddenly, so I should just write the letter for him to read now. Mr. Husband was beyond appalled, which I still don't understand, because, seriously. You need to take these things into consideration. Also my dad didn't think it was such a great idea, either.

Wednesday, December 28, 2011

Mama. Tay. Sunshine!

I know this probably doesn't sound like a big deal to you, but it's a HUGE deal to us.

Sunshine wants to play with me! For a bit over the last week, she's been coming to me, taking my hand, and saying:

"Mama. Tay. Sunshine!"

And even though I play with her all day, and even though between nursing our 3-month-old and trying to keep the house tidy and cooking and laundry and being generally lazy I'm beat and just want to sit on my ass, I do play with her, because, well, how could you *not*?

The past few months, I've been quite envious when reading parenting boards and milestone charts when people describe their "bossy" toddlers. On lousy days, it makes me both sad and angry- "my 18-month-old is soooooo needy! How can I make her stop asking me for everything under the sun?"

Oh, lady. You don't know how great you have it. (I suppose this is a common feeling in parents of atypically-developing children- frustration and jealousy of the "little" things other parents take for granted. If your child can't walk, it's painful to hear someone gripe about their toddler climbing the stairs. If your child can't speak, it's painful to hear someone wish their kid would just. Shut. Up. One of the great things about being a "special needs parent" is that you celebrate the little things, and learn to appreciate and cherish the many wonderful things your kid *can* do.)

When Sunshine was 6-months-old, we went and visited Mr. Husband's mom in Alabama. His step-brother's wife and her two little girls, 8-months and 4-years, were staying there at that time, too. The 8-month-old would stand in her crib and cry, "Mama! Mama! Mama!" until she was picked up.  I remember thinking that it was so cool that a tiny little baby could do such a thing when our girl didn't even really babble.

Over the last 18 months, I remember looking back at that little one's cries to her mother less and less fondly. When Sunshine was 8 months and not calling for me, I figured it was because she was busy cruising and crawling. When she was 12 months and not calling, I thought maybe it was because she was putting all her energy into walking. When she was 15 months and not calling, or even saying "mama" at all, I started to remember that sweet little 8-month-old with bitterness. When Sunshine turned 18-months and 3-days, and she called for me from her bed as her dadda was laying her down, I remember how my heart felt like it would explode with happiness, and, I am ashamed to admit it, sadness for not hearing it sooner.

She still doesn't ask for me frequently. Mr. Husband usually does her bedtime routine, and if she'd rather play more, she'll cry, "Mama! Mama!" but once she's upstairs, she's fine. She doesn't seek a lot of comfort or assurance from us, but she has, in the past month, decided that mama's kisses make every boo-boo, even really old ones that have long since healed, all better. She's learning to ask for help more and more. And, best of all, she asks me to play with her.

"Mama. Tay. Sunshine!"

Of course Mama will play with Sunshine. Mama would like nothing more.

Thursday, December 22, 2011

"Einstein Didn't Talk Until 3!"

Yeah, well, super.

Einstein was probably autistic.

To be fair, so were Thomas Jefferson, Isaac Newton, and Nikola Tesla, maybe.

It's still a stupid thing to say to the parent of a late-talker, and here are some reasons why:

1) I love my kid. I think she's super bright. She's no Einstein, though. I mean. Seriously. Einstein. Do you have any idea how smart he was? Like, you're not smart enough to even know the word for how smart he was. *I* can't even *spell* Einstein right without spellcheck, and I'm really smart.

2) Einstein *totally* talked before he was 3. He was a good student who did well in school. When he was 12 he read physics books, and at 13 he favored Kant.

So, please, never tell a concerned parent, "Oh, don't worry. Einstein didn't talk until he was 3, and look how well he turned out!" Because it's mean and it's dismissive and because it's not even true.

Monday, December 19, 2011

"She's a Therapist's Dream!"

Well, I suppose we all need to be known for something!

Sunshine had her OT evaulation through EI today. The OT was super-booked when the PT and DT (developmental therapist- I thought she was an SLP, but no) came out 2 weeks ago, so came on her own this morning. It was a *really* good visit, especially after our pretty rotten (in my eyes) pediatrician appointment last Thursday.

Dr. Baby Doctor reluctantly gave us a referral (which hopefully should be made today) to a neurologist for apraxia, not autism. Whatever, just as long as she gets seen by someone who knows what they're doing. (She has some apraxic signs for sure, but at this age and developmental level, there's no way for us to know if she has issues with oral-motor, motor-planning, neurological, or just is really quirky with her speech.) So, that's a good thing, even if I had to burst into tears at her appointment when he said, essentially, let's just wait and see, because I'm so sick of the excuses! "She's not talking because she's walking so well!" "She's not asking for things because you meet her every need!" "She's just a late bloomer!" "She's fine!" "What do you expect, she's only 2!"

The OT was awesome, though, and made me feel like I'm *not* a crazy person, like I'm not just imagining things. She was beyond impressed with how much we know about sensory stuff and how well we've kind of naturally met a lot of her sensory needs. From the trampoline to the Sit'n'Spin to the buckets of pasta and beans and rocks, she was really quite tickled.

"I'm surprised you don't have a swing in here!" she said.
"We did," I replied, pointing to the eyehooks in the doorway. "She loves to jump, but hates swinging. Go figure!"

She picked up on a lot of Sunshine's little behaviors- lining up things, perseverating on words (she gets stuck, especially when anxious), and that despite her cheerful demeanor, she's really quite disinterested in what people around her are doing. But she also remarked on what a compliant, bright, and adorable kid she is- "she's a therapist's dream! They're going to love working with her!"

She really is an obscenely pleasant child. Yeah, her meltdowns suck, but hey, she's 2. Overall, she's such a placid, passive, compliant kiddo. She tries really hard to do what's asked of her and you can see how frustrated she gets on the occasions that she does try to communicate her needs and wants, but doesn't have the language to do so.

She kept saying a word that I'm not familiar with- something like shushy. Unfortunately for us, her pronunciations are often pretty far from the actual word- she says "shayshee" for baby and "shushuh" for flower, and she changes the way she says words frequently- today "chair" is "shuh," when she usually says something closer to "chuh." Because she doesn't point to, lead you to, or bring you the thing she wants, it gets really frustrating for both of us when she can't say the word she wants.

The OT thinks she'll do well if we get a good SLP. We're going to have OT once a month to help keep a good sensory diet going. She confirmed that she's hyposenstive and sensory-seeking, which is apparently a "fun" pairing of sensory issues, as you don't have to deal with the constant meltdowns from clothes feeling bad or food tasting too sweet. (Sunshine *loves* extreme foods- the spicier and crunchier the better!) I got permission to give up on the half-assed brushing protocol we've been doing, so that was good news. Sunshine likes a lot of pressure but has become progressively more resistant and avoidant to touch from people, so letting me brush her every 2 hours was not easy for her at all.

We need to get her a weighted vest and lap pad- she is much happier to be touched if she's got some weight on her, we've come to realize. I'm not sure yet if I'll make them or just buy them- they're *not* cheap, but I'm pretty lazy lately, so, you know. Whatever. Mr. Husband and I also think we'll push for her to start preschool right when she's 3, next December, instead of waiting until the next fall. She's more than happy to detach from us so I doubt that will be an issue (for her!). I think she'll also really benefit from being around other kids.

She has started saying "no" for the first time, after hearing one of her playmates say it a lot. She doesn't use it meaningfully yet, but I'm really glad that she picked it up. As hard as it is to be the mom of a kid who doesn't make her needs easy to read, it must be much harder to be that kid, so, as much as it pains me to think of having a toddler who loves "no," she needs it, so we've been working a bit to help her learn what it means. We've also been trying to teach her "stop," so we can play games that she likes, like chasing games, but give her control over them. Usually if we're playing an intense game like Doggie- where I pretend to be a doggie and chase her and nibble her, she likes it until she starts crying. Teaching her "stop!" will help her learn to tell us what she wants in a constructive way, before her emotions get too tough for her to handle.

She's such a delight. She really is a little ray of sunshine, so it's even more distressing when she's upset. She's (totally objectively, of course!) physically a beautiful child, and I'm sure her therapists will enjoy the break from working with very low-functioning, aggressive children.

She's awesome, and I guess I'm glad that she's a "therapist's dream," because she's also *our* dream.

Wednesday, December 14, 2011

Mmmm, birthday!

This past week has been wonderful. I took the advice of many, many people, and just enjoyed my kids. 

Sunshine had her 2nd birthday. She had a little party and got some terrific presents. She learned that "birthday" and "cake" are words that go together, but, since she hasn't learned that yesterday is not today is not tomorrow, she's convinced it's still her birthday and, as such, she should be receiving cake. Too bad for her, though! She's been wandering around since Monday saying, "mmmmm, birthday!" That sums up the event, really. Mmmm!

We also went to a friend's house over the weekend where I'm sure I was thought to be the epitome of the helicopter mother, but, guess what? If she can see it, she'll touch it. If she touches it, she must hold it. And if she holds it, odds are it'll get dropped. I guess I could "free-range" parent her all day, but you'd probably not invite us to your home again, at least not until the insurance check clears!

I'd like to say that I've been able to turn off the over-analytical part of my brain, but it's not the case. Yeah, while watching her at the train table with an almost-3-year-old and a 6-year-old, I'd think, "She's parallel playing! Hooray!" and while watching her circle the room aimlessly I'd think, "Sigh. She's distancing herself again." BUT. But I was able to let those thoughts enter and leave so I could just enjoy her enjoying the world.

She's rather upset that there are presents about the house that she is not entitled to have, but, tough luck, kid. Thems the breaks.

Wednesday, December 7, 2011

EI Results Today

Our EI results meeting went well. As expected, Sunshine has both a speech and a social delay. What wasn't expected is that her social delay is more pronounced than her speech delay- she has a 20% speech delay and a 25%+ social delay. I didn't ask what the true figure of her social delay is, and can't figure out the algorithm used. I guess knowing that she has a standard deviation of -2 is enough. It means it's a severe delay, which is a little hard to conceptualize in the face of such a bright, beautiful child.

She'll be getting speech therapy once a week, which is the maximum they offer as EI can't afford more. If we wish, we can get additional speech through some of the various places in town. I've read, that for the under-three set, speech therapy weekly is about as intensive as you want to get, but I've also read the opposite. After we have our first meeting with her SLP we can think about adding more. It's unlikely that we'll know what's at the core of her speech problems- is it oral motor? Is it structural? Is it auditory? We likely will not get a clean answer with that.

As far as the social delay goes, we weren't offered anything, specific or general. Mr. Husband and I have discussed hiring one or two adults to come in and play with her on a weekly basis as "play helpers." We've not had great luck with socializing her outside the home. She does surprising well at the hellish play area at our local mall, but any amount of structure added to out-of-home activities is asking for a meltdown.

We think her meltdowns are largely sensory in nature, and have an OT eval in two weeks to set up her sensory diet and determine if she might benefit from monthly OT appointments to help her self-regulate and give us new/better ideas of how to help her reach her full potential.

At this point, my anxiety is much less than even a week ago- I think bumping my Zoloft up to 25mgs (how's that for a "therapeutic dose!") has helped a lot. I'm not married to the idea that she has autism right this second, though it's becoming increasingly more difficult to think that it could be anything else, as I don't know what else could possibly cause such disconnect in a healthy, smart girl.

Social delays are caused by things like lead poisoning, malnutrition, neglect.

And autism.

Could it really be that a neurotypical child simply has such an independent personality that she will play happily by herself for 4+ hours? Can a child not react to the extreme emotions of a parent and then go on to form deep, meaningful bonds with others? Could she really be *just* that quirky, but not autistic?

Anything's possible.

I go back and forth on this. Thinking of her as "just speech delayed" or "just quirky" sure feels good. It really does. Thinking that there's nothing *wrong* with her development feels nice and warm and safe. Then I think, yes, that feels lovely, but what if you're setting yourself up for heartbreak? What if you convince yourself that she's typical, that's she's fine, and the day comes when she's given a numerical code that signifies not so much typicalness, not so much fineness. Doesn't it make sense, logically, to come to terms with the "worst" case scenario? Then, if after being evaluated by people who really know what they're doing, we learn that, yes! She's just quirky! Then I'll feel *wonderful!* I'll feel relief! But if the results are more on the 299.00 level, then I won't have all these dashed hopes.

Not that it will really matter. We know that, as of right now, she has a moderate speech delay and a severe social delay. That means we have words for what we already knew, nothing more. We don't know why she's delayed, and we could live our entire lives not knowing. Making peace with the unknown is a terrifying concept to someone, like me, who thrives on knowing exactly why things happen. It's not enough that the toaster toast my toast- I need to know why and how.

You don't get closure with diagnoses. You don't get to close the book on your kid's issues and move on to something completely different. You don't get answers, which is just as well, as you don't even know what the questions are. You just keep living, you just keep loving your child. It's all you can do. It's all any parent can do for any child.

And it really sucks, because that's not enough. It's not a satisfying answer and it brings no sense of movement.

But it has to be enough, because that's all there is.

Monday, December 5, 2011

Early Intervention Eval Results Meeting Pushed Back


There was a paperwork issue between EI and Dr. Baby Doctor that led to our meeting being pushed out until Wednesday. Apparently, EI faxes some stuff to the pediatrician, who then provides the appropriate diagnostic code. Without that code, EI can't progress. Because Sunshine wasn't presenting with any major issues at her 18-month checkup, she has no existing diagnosis. EI faxed over the results of their evaluation so Dr. Baby Doctor was able to say, "Yes, that's a speech delay for sure."

So my kid now has a speech delay diagnosis, and now she is all better and we know what to do to help her.

What's that? That's not how a diagnosis works?

You don't say.

Sunshine's caseworker said that they're suggesting speech therapy once a week to start. We're also going to set up an OT (occupational therapy) evaluation to establish what her sensory issues are and set up a good sensory diet. This is just a starting point, and as her therapists see more behaviors (or fewer behaviors!) her therapies will be adjusted accordingly.

Whoa, whoa, back up! you say. A diet?

Yeah. Only not the kind you eat. A sensory diet is essentially a bunch of different activities and exercises to help V's nervous system regulate itself better. We're all taught that we have five senses- taste, touch, hearing, smell, and vision, but we actually have eight. The other, secret three are: interoceoption- the way stuff feels on the inside, like knowing if your stomach hurts or if you need to pee, proprioception- the feeling of pressure and movement in your joints and muscles, and vestibular- the feeling of balance and where your body is in relation to other things.

Kids whose nervous systems don't process all eight senses typically have a lot of problems adjusting to their environments and focusing. Some are hypersensitive- tags in shirts and seams in socks may feel like torture. Some are hyposensitive- they may seem to not notice pain or extreme temperatures. Some are sensory-seeking- they need more, more, more touch, taste, light, etc. Many people have a mix of two or more responses. Sunshine seems to be a mix of hyposensitive and sensory-seeking, I'm not sure, thus the OT eval.

I'm quite proud of myself for not freaking out, frankly. I've been very anxious and have been anticipating this appointment, and, for someone who doesn't cope well with sudden change, I think I'm taking it in stride. Today is just another day to enjoy my kids. Tomorrow will be just another day to enjoy my kids. Wednesday will be yet another day to enjoy my kids, and there happens to be a meeting in the middle of it. No big deal.


No big deal.

Sunday, December 4, 2011

The Importance of Being Right

How important is being right?

For me? Very. Very, very, very important.

Being right brings a sense of comfort and stability. It means that I am, in fact, processing and using information correctly. It means I get what's going on. It means I'm in touch with the world via facts and figures. It means I understand. It means I'm smart.

Being right means other people are wrong. If I'm right, and being right makes me smart, then people who are wrong are stupid. Not only are they stupid, but they must also have other severe character flaws. This is a theory of mind issue- it's very difficult to think the best of someone and their motives if I think they're wrong about something. I have to manually go through the process of telling myself that a) I might *not* be right, b) they might not be wrong, c) if they're wrong, they have valid reasons for it, and d) those reasons don't make them a bad person.

For example: creationism. If I learn that someone is a creationist, I decide that they must also hate science, hate knowledge, hate books, and generally just hate everything I like. They hate puppies and rainbows and snowstorms.

And therein lies the rub: that kind of thinking makes me wrong. It doesn't matter if I'm right that there is no God, right that evolution is real, right about any of that. The fact is that if someone believes in creationism, that's it. They believe in creationism. Any further characterization of that person is wrong, even if they really are a big old dummy who hates everything good in the world. I can't make that assumption based on one wrong belief that they hold.

I like facts. Facts are things that are true, and they're true for everyone. I like social rules, like Express Lane item limits. It's difficult to navigate in a world that is designed for people who understand social cues and norms innately, not for people like me, who struggle to know what's right and what's wrong. When people deny facts that I know to be true, it feels as though they've cut ahead of me in line with too many items in their cart. It feels like they're personally slighting me, because they can't follow the rules, can't agree that some things are just true.

Do I like being right? Yes.
Are there times that I like being wrong? No.
Do I want more than anything to be wrong about what's going on with my kid?


I am working hard to open myself up to the idea that Sunshine has a speech delay, Sunshine has sensory issues, Sunshine has communication issues, and that's all we need to know right this instant. She could have autism. She could have OCD. She could have heart disease in 30 years. She could be a wonky two-year-old. She could have something I've never even heard of.

I am just her mom. Yeah, I'm bright and I read a lot, but I'm not a specialist. Even if I was, I don't have the objectivity to diagnose my own kid. I think she's "spectrumy," but that doesn't mean I'm right.

And I really, really hope I'm wrong.

Saturday, December 3, 2011

Let Me Tell You About Our Daughter

Dear Friends and Family and Strangers on the Internet,

Let me tell you about our daughter.

Sunshine is turning two! It's remarkable how quickly the years have slipped through our fingers. Only moments ago we held a tiny, skinny, old-man-looking baby who was entirely helpless and dependent on us for her complete existence. She is now a strong, skinny, cherubic-looking little girl who needs us only to open her markers and occasionally remind her to eat. She sees the world through big, bright, blue eyes and cannot get enough of what she sees. From the smallest acorn to the biggest tractor, she embraces her environment and devours it. Nothing in her view escapes notice and examination; she takes delight in nature and is entranced by the technology that even 30 years ago seemed so far-fetched. She brings joy to us and adds so much color to our lives. And walls. And her arms. She really, really likes art.

She remembers *everything.* This is a not a child one can lie to, not that anyone would ever want to. Her innocence and vibrancy is truly a thing to behold. Sunshine can take the most mundane of objects and experience them as though she was the first person to ever hold, say, a grain of rice. To her, everything is a toy, everything is a learning tool, everything is for her alone.

To others, she appears to be a dreadfully advanced child as she skillfully climbs the most perilous playground peaks, calling out the things she sees to everyone and no one at all. "Airplane! Tractor! Squirrel!" When stuck in a precarious situation, her determination in getting herself unstuck is a sight to see.

She is made of star stuff and she is perfect.

There's also something going on with her. Something's wrong.

We've had mild concerns, which we've expressed to her pediatrician, Dr. Baby Doctor, since she was 6-months-old. Despite all our hippie-dippie attachment parenting Dr. Sears ways, despite 11.5 months of breastfeeding, despite cosleeping for nine months, despite all that stuff that somehow magically creates an unbreakable bond between parents and child, despite all that, she never really needed us. She nursed, but never made more than the most fleeting of eye contact. She was held, but never melted into us, never held us in return. She talks, but she doesn't use her words to connect, express her needs, desires, or to share her feelings. When she cries, she never, and I mean never, has come to either of us, has never asked to be held, has never offered a hug.

She never really babbled. Her first "words" were animal noises. She was 18 months (and three days!) before she called for me, before she first said "mama," with any meaning. She was around that age when she first asked for help, and, to this day, doesn't ask for more juice, doesn't bring us her empty cup. She was 22-months before she gave us a hug, after we moved her arms into position, thinking perhaps some kids just need a little lesson in hugging. She doesn't react when someone is sad and ignores her baby sister. She melts down a dozen times a day (on a *good* day), every day. She echoes everything she hears but cannot put two unique words together on her own. She understands complex verbal instructions like "get your blue block and put it on the green table- nope, the block that's under the doll," but doesn't understand what you're doing when you point to something across the room. She gets very anxious when in bright, loud places and struggles to cope with sitting or standing still- gymnastics classes and library story-times are confusing and stressful and anxiety-creating for her. She doesn't offer you food if you're hungry or water if you're thirsty, though will compliantly fetch you a bottle of water- nope, not that bottle, the one next to it!- when asked. She tries so very hard to do what she's told and will search for just the book you asked for until she finds it.

She is different from other children. She's not better nor worse-acting. She's simply different. And we want to know why.

Two weeks ago we decided it was time to start figuring it all out. We called Early Intervention for an evaluation. It was one of the more difficult phone calls I've had to make, as it wasn't just a phone call. It was admitting to myself and others that something is really off with my child.

They sent a physical therapist and a speech-language pathologist to our home. Over the course of two hours, they played on the floor with her and asked us questions. They knew that we have a strong feeling about the root of her struggles, and, within five minutes, the PT stated, "I know you're worried about autism. I don't see it. I work with lots of autistic kids, and I don't see it."

We nodded and smiled, as that's what you do when your fears are being invalidated by someone who has no business or expertise in invalidating such fears when you didn't even ask them to, and I gently said, "Yeah, it's so tricky with toddlers, and girls especially." Girls present very differently from boys, you see, and so frequently slip through the cracks. This is well established.

The SLP wasn't so quick, though. She made quietly pointed remarks about Sunshine's lack of eye contact, her lack of initiating activities or communication, and her, in her words, "spectrumy-behaviors." They both gave us a pretty big ego boost in telling us how engaged and responsive we are with Sunshine, even if she's not engaged and responsive back.

Sunshine never once looked up from her various activities to check in with me or her dad, never once tried to include us, never once needed our reassurance. I asked the PT, out of a little bit of spite, what she thought Sunshine's deal was, socially. Why, near the end of the evaluation when she was tired, overstimulated, and heard me explain that we don't spank, we "do time out. I just count, 1, 2-", and burst into hysterical tears where she stood, not moving toward anyone for comfort, not embracing me back when I dropped to my knees to hold her, explain that I didn't mean it, that she wasn't in trouble, that it was all okay. Why, if my child isn't autistic, does she not need me?

"It's just her personality. Or she has OCD."

Yes, thanks, my 2-year-old has obsessive-compulsive disorder, which totally explains why she is oblivious to children her own age, why she has only spontaneously tried to comfort her squalling baby sister 3 times, why a stern facial expression means nothing to her, why she is unmoved by praise, why she points out every Boeing, John Deere, and Peterbuilt without looking at your face to see that you're interested. Maybe it explains why she stacks things regardless of their ability to be stacked, why all objects and toys exist only for her to touch with her hands, face, mouth, and feet, why she loops her words- especially when anxious- saying, "paci, snack, apple, medicine, park, apple, paci, park, park, snack, paci, snack, park, medicine, apple," over and over and over, why she flaps her hands, walks on her toes, shrugs her shoulders, flicks her fingers at her eyes and mouth, why she takes her toys off the shelf, dumps them out, feels them, puts them back in their container, puts them back on the shelf, then moves on to the next thing over and over and never really plays with her toys, why she is in literal constant motion, why she *needs* to jump and spin to calm down. Maybe OCD explains that. But, please, all-knowing PT who clearly deserves a book deal, explain why she doesn't *need* us.

Our daughter doesn't need us and we need to know why.

The evaluators aren't permitted, with good reason, to tell you exactly what's going on right then and there. They need to run the numbers and establish the level of delay(s), which are then relayed to you by your caseworker. That said, they told us at the end of our session that V's fine and gross motor skills, adaptive (self-care) skills, and cognitive abilities all seem typical. We knew that. They then said that they could tell us, without tabulating the results, that she would qualify for services due to both a speech and a social delay. We knew that, too.

In our state, a child needs to have a minimum of a 25% delay in one area or a 20% delay in two or more areas in order to receive services through EI. We will be receiving the hard numbers and results on Monday when Sunshine's caseworker comes to help us understand her results and set a game plan. You can bet I'll update you then.

We meet with her pediatrician, who is not a developmental pediatrician but who does "specialize" in autism, on Dec 15th for her two-year checkup and a special meeting to discuss the possibility that Sunshine does, in fact, have autism. We'll be bringing (what I hope is!) a concise list of our concerns and the EI report.

Our hope is that he'll not only validate our concerns but refer her to either a developmental ped or neuropsychologist for further evaluation and, if necessary, a diagnosis. We've decided that if, for whatever reason, he thinks more "wait and see" is called for, we'll go over his head.
Do we think we're smarter than doctors? Not by a long shot.
Do we know our child? Yes.
Do we want an ASD (autism spectrum disorder) diagnosis because it's the hip, cool fad of the day? No.
Do we want an ASD diagnosis so we can ensure that Sunshine receives (and insurance covers) the services and therapies that will help her grow into an adult who is able to establish meaningful relationships and cope with the world around her?


My daughter, my Sunshine, is perfect. She is determined and courageous and silly. She is beautiful and gentle and independent. She is goodness and light. She is made of star stuff.

When I sneak into her room at night before we go to bed, I tuck her in, take all the books and blocks from her bed, and kiss her silken, golden head, tell her how proud I am of her, tell her how much I love her, I always think of Napoleon's words regarding China, and unbeknownst to him, my daughter:

"Let her sleep, for when she wakes, she will shake the world."

First Post: About Us

Welcome, one and everyone!

Some of you may know me from various venues, some may not. For my readers who do know me, please try to respect our bit of anonymity; this blog is primarily about children who will grow up and who probably would like to distance themselves from the internet-is-forever ravings of their loony mom.

Here's the scoop:

Me: I'm the mom! I'm 31, have red hair, hate the beach, and love my family. I was diagnosed with Asperger's syndrome in December of 2010 at the ripe old age of 30. Following an all-too-typical path, I was a quirky kid whose quirks were chalked up to being "gifted." Yeah, I'm bright, but I ain't that bright. As an adolescent, things like ADD/ADHD were tossed about. In my very early 20s, bipolar II, cyclothymia, and/or general anxiety were the phrases professionals used, all while scratching their heads and saying, "You don't *actually* fit the DSM, but there's something going on with you so we have to call it *something.*" In the second half of my second decade, it became more and more clear that I wasn't any of those things. I was, and am, and will be, autistic.

Do I use "autism" to mean "all Autism Spectrum Disorders, including autism disorder, PDD-NOS, Asperger's, Rhett's, and CDD?" Yes, I do.
Do I consider myself to be an aspie or an autie? Both- they're interchangeable to me.
Am I high-functioning? You betchya!
Do I have issues with the term "high-functioning?" Yes I sure do.
Can I live on my own for more than a month without becoming homeless? Newp.
Can I love? Yep.
Do I have empathy? Sure, though it may look different from what you expect.
Am I a good wife? Not so much, no. My husband says otherwise, but what does he know?
Am I a good mom? I think so, so far.
Can I build robots? Almost!

Mr. Dad: He's the dad! He's 30. We've been married for, well, take V's age and add 9 months and 2 weeks. So what? Who cares, it's the 90s. I don't know if he likes the beach because I've never asked him. He loves his family. He's not autistic. He's a big ole nerd, though, and, if I had to pigeonhole him, I'd say he has an Asperger's-type personality. So, like, if autism is a spectrum, with 0 being totally neurotypical (this is a word that means "normal," or "not autistic," or "regular person who doesn't have neurologically-based differences in experiencing the world, connecting with people, and/or behaviors.") and 10 being the kind of super-duper-severe classic Kanner's autism that terrifies parents everywhere, he's a 1. He's awesome and I love him to the best of my ability. We're also in the early process of divorce. It's okay, though.

Moonbeam: Moonbeam is *my* first-born. I got pregnant at 16, made an adoption plan, and gave birth to her at 17. It's a very open adoption, and from my perspective, it's been totally awesome. I have only positive emotions and things to say about my experience, as it was the right thing to do for both of us, so why would I mourn it? It's difficult for me to relate to most birthmothers, and vice versa, as I don't have any lingering regrets or sorrow about it. Moonbeam seems to have the same feelings about it that I do, which is not surprising, as she's quite similar to me. While she's not NT (neurotypical), she's also not technically on the spectrum. I don't feel comfortable saying any more about it than that, as her life and privacy are exactly that- hers. And she's amazing.

Sunshine: Sunshine is *our* first-born. She was born quickly, easily, and without complication in 12/09, after an uneventful pregnancy. She's awesome. Seriously. This kid, man. This kid. This blog is largely about her. She's beautiful, so so so smart, funny, brave, adventuresome, and clever. She also has something going on. As of this writing, we don't know what it is. Mr. Husband and I strongly suspect that she is autistic, and that realization, after almost 2 years of wondering, seeing little tiny delicate red flags, was our first step on a journey that will last for a long, long time. I really cannot convey how incredible this child is, and how lucky I feel every day for getting the chance to be her mom.

Snowflake: Snowflake is our second-born. She was born in a quick, easy manner, much like her sister, in 09/11. She is a little baby, and, as such, will likely not be talked about so much, because little babies are pretty boring and there's really not all that much to say about them. I *will* say that's she so alert, strong, engaged, and funny. She does suffer from Second-Child Syndrome in that there are many times fewer pictures of her than of Sunshine, but I think she'll get over it. A is a terrific baby and, at less than 3-months of age, is already head over heels in love with her big sister. Also she likes us grown-ups pretty well, too. And we adore her.

So that's the scoop.