Tuesday, February 21, 2012

Long Overdue Update Time

I have not been writing lately because I decided to write a novel, which is a real practical thing to do when parenting two very small children and also when you haven't written fiction since grade school. It's going well, though. I started on January 20th, and now have 38k words done. It should be pretty good, I think.

In other, more interesting news, because no one likes hearing writers pontificate about writing, except for other writers who are usually too busy writing, Sunshine had her neurology appointment today. It went well-ish, despite the nurse jotting, "DO NOT APPROACH" on her chart because she really, really, really didn't want the nurse to listen to her heart. The neuro saw all of our concerns, and agrees that she has a lot of autism spectrum features, but he doesn't want to just jump to a diagnosis. He ordered a CMA, which is a chromosomal microarray analysis, which is a thing they do to see if there are any testable genetic quirks. Then we see him again in three months.

Odds are good she'll be diagnosed then, provided her genes are just the regular amount of quirky.

I don't know how I feel about it, frankly. When I first started this blog, I was 99% sure it was autism, and was all freaked out about it, because I'm an anxious wreck most of the time. Then I went through that whole acceptance process thing, and felt all better. Like, this is my kid, she's always been my kid, and she'll always be my kid, and she's practically perfect. This morning, before her appointment, I was 99% sure the neuro would say, "You, madam, are a crazy person. This child is perfectly typical but you are in dire need of serious medication."

But he didn't say that. He didn't even say let's just wait and see. He didn't say come back in six or nine or twelve months. Something's going on with her that warrants ruling out, or discovering, a genetic disorder.

I'm not usually good with recognizing my own complex emotions. Happy, sad, hungry- yeah, those are easy. But I feel something that I don't understand, something that's kind of like an emotional headache with an emotional stomachache. I don't know what it is, but my plan is to just ignore it until it goes away.

So, anyhow. That's the update. Overall, Sunshine's doing beautifully. She puts 4-5 words together now, like "Mama. Upstairs. New game. Room," to tell you she wants to get a new game out of my room, which is upstairs. She spent 4 days in Alabama with her dad and his mom. It was the longest she and I have ever been apart, and I missed her terribly. She... she knew I wasn't there, but didn't really care. Mixed blessing, I know. No one wants their kid to freak out every time they're out of sight, but, selfishly, it's hard to have a child who runs a little lukewarm emotionally. Okay, now I'm gonna go work on my book.

Wednesday, January 18, 2012

Art Show!?

I hope Sunshine's SLP knows how lucky she is.

I made the huge mistake this morning, at 8am, of telling Sunshine that her SLP, Michelle, would be here today. What I didn't tell her, as she's only 2 and has no way of understanding, is that M wouldn't be here until 1045am, so instead of thoughtfully giving my child a preview of her day, I caused endless stress and anxiety, because, no, she's not here yet.

"Artshow?" It only took an hour to figure out that she didn't mean she wanted to watch Yo Gabba Gabba's "Art Show" episode, which she did get to watch because "artshow" only sounds like "Michelle" if you're a really drunk, which I was not.

"Ohhhhh! Michelle?! You want Michelle?!"
(This is a Big Deal, as she doesn't really ask for anyone, ever.)
"Artshow! Toys!"
"Yes, Michelle brings toys to play with you!"
"Elmos!" (She gets plurals. It's really cute.)
"Yep, she'll have Elmos for you to play with!"
"Yes! Michelle will bring puzzles!"
"Umm-hmm. Michelle is coming to play with you!"
"Yes, Michelle is coming to play with Sunshine. Very good."
"Fah? Floor! Yes, Sunshine and Michelle are going to play on the floor!"
Lather, rinse, repeat, for nearly three hours.

Michelle came and went. Sunshine played very happily, and only shut down for a tiny bit about halfway through the hour. She really doesn't like being pushed to talk. It's only her third session, but she's starting to grow bored of the toys already, and is getting a little resistant to constantly having to "put your lips together!" to produce p/b/m sounds.

She has p/b/m, which are very early sounds, but only in certain contexts. She can say "mama," "poop," and "boo-boo" as clear as a bell, but whenever there's a long a, e, or i after the p/b/m, she usually switches to a d/g/k sound, but sometimes to a "shu" or other sound. So "pee-pee" is "kee-kee," "baby" is (currently- "baby" changes a *lot*- it was "ashee" for the longest time) "aye-kee," and "me" is "nee."

*I* suspect apraxia, which is why we got the neurology referral. I mean, my doctorate is from Google U, so I have no idea what I'm talking about 99% of the time, but from what I can see, she has a lot of red flags for childhood apraxia of speech. In a nutshell, CAS is neurologically based- the brain knows what it wants to say but can't correctly tell the mouth what to do. It's a motor-planning problem, kind of like dyslexia of the mouth area. (There exist both oral apraxia and apraxia of speech- usually you can have just verbal apraxia and not oral, but if you have oral, you almost always have verbal apraxia, too.) See, my kid's so special and perfect that she can't *possibly* just have a general speech issue; she has to have a fancy rare thing, because she is such a special, unique snowflake. Yes, you can all roll your eyes in my general direction. I'm pretty insufferable.

She was a late babbler, and was never chatty once she started- "quiet baby" is an understatement for her infancy. She often says words seemingly inside-out: "dada" first was "ahda," and "flower" was "uhfuh." She has really inconsistent consonants and vowels- "nose" is anything from "nose" to "news" to "nuhse," all in the same day, and car will be anything from "cah" to "fah," to, as it is today, "fuhm." She can't imitate facial expressions, lick her lips, pucker her lips, puff her cheeks, wiggle her tongue, or bite her lip (though these could all be due to oral-motor weakness, which is different than motor-planning.) She had a lousy latch all through her 11.5 months of breastfeeding and only just learned to drink from a straw last week. She has very limited facial expressions in general. She pauses a lot between words, and her pronunciations break down dramatically when she tries to string more and/or longer words together. The phrases she has solid, like "all done," or "it's okay," come out quickly and smoothly, but newer phrases are very stilted. "Mama. (pause) Help. (pause) Sunshine." She's still really echoy, and new things she overhears and repeats tend to come out clearly, but when she uses them again on her own, they're often muddled.

Michelle thinks it's more of a motor weakness issue, so we did a really half-assed little test to see if she'd allow us to bribe her into making some nice mouth movements. Nope. She wanted that lollipop alright, but still couldn't pucker her lips, lick her lips, or wiggle her tongue. It wasn't surprising, but it wasn't terribly good science. Sunshine drools a little bit more than she should at her age, and has an open bite, probably due to her heavy pacifier use at bedtime and naps. Those things are usually more indicative of motor weakness than motor planning, but, my Google U degree and $5 will get me a cup of coffee.

We really don't know what's causing her speech issues. It could be any number of things, and it could very easily be something that we'll never know. Artshow will need to spend more sessions with her to see what works and what doesn't. She's already picked up on the lack of face-checking Sunshine does, and has adjusted her play style accordingly, bringing desired toys up to her mouth to get Sunshine to look at the way her mouth is shaped.

Aaanyhow, she gets fed up working those bilabial sounds (b/p/m, for those of you just joining us) and quits quickly when she's asked to say a CV (consonant-vowel) combo that she doesn't have. "Ba-ba-boo" is fine. She'll say that all day. "Ba-ba-bee" is met with a very firm "ALL DONE."

Overall, she's doing great, though. She's cheerful, cooperative, and tries very hard. Artshow says she's at the top of her caseload in terms of overall speech, though, which is wonderful. I mean, someone's got the kid who isn't doing well, and as dickish as it is, I'm glad it's not me.

So Sunshine enjoyed her 60 minutes with Artshow today, and I thought that would be the end of it. But, no. She woke up from her nap asking for Artshow, with her precious Elmos and Pig and Pegs ("Elmos," "Tig," and "Tigs," of course.) By bedtime, she would ask for Michelle, then pause, and you could see the little lightbulb start to glow- "keek!"

"Yes, Michelle will be here next week."



Tuesday, January 17, 2012

Zoloft and Me

I've been on Zoloft for nearly 3 months now. I started taking a tiiiiny dose when Snowflake was a few weeks old, as I was feeling a little post-partum depression-y. Not like depressed, but just angsty and moody and yelly and anxious.

I started on 12.5 mgs a day, which is a really small dose. I'd read a lot of stuff that suggests that for people with obsessiveness, compulsiveness, anxiety, and mild ASDs that micro-doses of SSRIs can be of great help. Zoloft is the only SSRI that's really safe to take while nursing, so I gave it a try. It really helped level me out just a little.

I bumped up to 25 mgs a day a month or so ago. It's not considered a therapeutic dose, but it's had a remarkable effect in curbing my obsessiveness. I no longer feel driven by an outside (inside, I guess) force to research, study, or build things. It's nice to have a quiet brain, and it's nice to not feel compelled to do things I don't want to, but it does feel very strange. I don't feel flat or like a zombie- I just feel like me without the noise.

It's unsettling to not have a project. I get stuff done, and can focus on necessary and/or enjoyable things, but I miss my busy mind. I don't like that I actually have the mental energy to think about my emotions. For example, Mr. Dad and I are getting divorced. I'm fine, and the girls are fine, and he's fine, and we're starting all this on the best possible footing. Usually, though, I'd have some project going on in the background, taking up my time and energy. Without that, I actually have time to feel things, and I don't like it. I'm not used to dwelling on my feelings- ordinarily, I can acknowledge my emotions and move on, but now, with all this surplus room in my head, they stick around a little bit longer than I'm used to.

I'm still an emotional weirdo (hence the divorce- I'm just not cut from marrying cloth) and I'm still doing everything I usually do, but I feel lost without my projects. I have become more introspective and have been trying to determine what's at the root of my emotional stuntedness. Is it really Asperger's? Is it a really odd manifestation of childhood trauma? I really don't know.

If I can get "better," and want to form meaningful relationships, that's something I want to pursue. I don't want wine, men, and song for myself, though, but for my kids. If I can learn to be more "normal" for them, I will. If it's really neurological, then there's not much I can do besides learn more healthy coping mechanisms for navigating a social world.

All in all, I'm glad I started the Zoloft. I haven't had any side effects that aren't welcome (goodbye, libido, please, never come back) and it's helped hush up my head. I'd recommend it to others with OCD/ anxiety/ ASD/ spectrumy stuff for sure, but it's not magic, and it's not a cure for much. Quiet is nice, and I'm trying to get used to it..

We'll see.

Also: Sunshine's speech is coming along beautifully and she's enjoying her weekly speech therapy sessions. Her neuro appointment has been set up for the end of Feburary. Snowflake is being a very excellent 4-month-old, even if she wants to wake up at 7am just to yammer at me.

Sunday, January 1, 2012

Things To Teach My Daughters, List #1

In no particular order:

1) It's okay to be lonely sometimes. Everyone feels lonely sometimes. It's normal. When you feel lonely, tell your brain, "It's okay that I'm lonely right now. It doesn't mean that I'm sad or lacking, it just means I feel lonely right now." Don't worry about it. It won't last.

2) It's okay to be alone. Try not to be alone all the time, though. People are pretty nice and good people.

3) Boys are more trouble than they're worth when you're young. Study hard, use all that great young brainpower, and worry about boys after college. You've got loads of time, and it'll be worse for you in the long run to start with boys too soon- there's no such thing as starting "too late." There's *always* time.

4) Only wear comfortable shoes.

5) You can tell people to clarify when you don't understand something. They won't think you're stupid, and once they explain it, you'll understand it forever. If you pretend you get it, but don't, it becomes harder and harder to learn it *cough* multiplication tables *cough* as you get older. I promise, they won't think you're dumb. Just ask.

6) You don't have to be good at everything right away. Seriously. It's totally normal to be actually quite lousy at lots of things. Every single person has at least one thing they're terrible at, one subject that they're utterly clueless about- really, honest, and truly- everyone is awful at loads of things, and it's okay. Trying your best is way more important. Try really hard and stick with it. Even if you still aren't a good dancer, artist, or whatever, that's okay. Don't just give up when it gets hard, but don't beat yourself up if it's never perfect.

7) You don't have to be an expert on everything. Really, people don't care if you don't have an opinion on something. If everyone's talking about, say, Middle Eastern politics, and you're not up on them, it really is okay to say, "This is interesting! I'm not so up on this- could you tell me more?" You don't have to speedy-quick think of all the things you know about the Middle East and formulate a very firm stance then and there. I promise. No one will think ill of you.

8) Inside your head, *feel* like you don't care what anyone thinks, but don't *act* like you don't care what anyone thinks. If someone thinks you're dressed funny, boo on them, but don't dress in a way that would cause the average person to think you're rude and disrespectful. Don't roll your eyes at people behind their backs or in front of their backs- no eyerolling, period. Well, okay, just a little. Don't tell people off, even if they've slighted you. Always be polite and carry yourself well. Don't say mean things about people. You're going to be tall, so stand up straight. People will treat you well if you act like you care what they think of you- show them that you want to be taken seriously, and you will be far more well treated than if you carry yourself like a thoughtless jerk. (You can still always wear sneakers, though. I'm okay with that.)

9) You can read books all day, but not every day. Lots and lots of days, though.

10) You don't *have* to like to read. I hope you will, but if you don't, it's okay. Perfectly smart, amazing, educated people don't really love reading for fun.

11) Most people really are pretty okay. Give them latitude before you judge them- people usually don't *intend* to be unkind.

12) I love you more than anything, and no matter what happens in your lives, you can come to me. I'm a pretty okay kinda guy, for a mom, and you can trust me.

postscript: This obviously should actually be titled Some Things I Wish My Parents Had Taught Me, or, let's be honest, Some Things My Parents Tried To Teach Me But I Was Arrogant And Foolish Thus Ignored And Also Some Things No One Ever Taught Me.

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.