Wednesday, December 26, 2012

Santa Saves Xmas


The Little Chrissy and the Alphabeats dolls were a huge hit. Once she received those, she really didn't even want to open the rest of her gifts; she had to be coaxed back downstairs. Later, she could be heard giggling all day, as she played with them.

This holiday was a stressful one, worrying about her request. No pressure at all, nope! Thank goodness they were what she hoped for, and that she is happy with them. Now that this crisis has passed, maybe I can catch my breath before the next one.

Truthfully, that big smile on her face was all I needed to make it worthwhile. I don't know what I would have done if she hadn't loved them -- break down and cry, probably. That is why I stressed out over them, because I knew how important they were to her. But in the end, I pulled it off, and Santa saved the day. Thanks, Kris. ;)

Tuesday, December 18, 2012

Autism and Violence

Lots of people are talking about violence and autism and you can almost feel it in the air that autistics are about to be tarred like pit bulls with the brush "Dangerous." (And, as with pit bulls, this is utter and unfounded nonsense.) Parents and mental health professionals are weighing in. The media is running with it. Adam Lanza. James Holmes. Jared Loughner.
“Psychobabble reported by the media undermines psychiatry as science,” the [American Psychiatric Association]’s former president, Herbert Sacks, wrote in the late 1990s in a column explaining the history of the [Goldwater] rule. (Covering "Crazy", Columbia Journalism Review)
It's unethical, unprofessional, illogical and just plain stupid to diagnose someone based on the reports of friends, family or neighbors. Being weird in school doesn't mean someone is autistic. Being super-smart but socially awkward is not a diagnosis. Even if Adam Lanza's brother is correct when he says that his brother was autistic, it's still not a diagnosis. He said himself he hadn't spoken to his brother in years. Does he know or is he speculating? And is it appropriate to spew that information to the media?

My daughter isn't an Aspie. She's probably not in much danger of being labeled a killer. Probably. But you can bet your ass I'll be hesitant to share with people (face to face) that she's autistic, something I've never hesitated about before.

When moms like this one write about their kids as being violent, it's not helpful. If your child is violent and autistic, people hear "autistic" and assume violence going forward, when that is simply not the case. People who are in despair over their child's behavioral issues only make things worse for people whose children do not have behavioral problems. Don't lump my kid in with yours, sister. Get help. Help for you, help for your son, but don't try to make it sound like autistics are violent people.

I'm not going to rehash all the news. Here's some links worth reading:
Link between autism and planned violence discounted by experts 
Groups: Autism not to blame for violence
Don’t Blame Autism For Violence, Advocates Say
Asperger's, Autism Not Linked to Violence: Experts
Unfortunately, the more far-fetched an idea, the more appealing it often is to the media, and while it’s natural to ask questions about a gunman’s mental health in the wake of a shooting spree, some outlets inevitably reach too far.  (Lanza, autism and violence, Columbia Journalism Review)
Sensationalism has always been used to sell copy, but this irresponsible behavior is going to hurt an entire community of people who are already struggling to get recognition that they are capable people who deserve respect and basic civil rights. 

Tuesday, December 4, 2012

Tis the Season

A couple months ago, Diana started a Christmas list. The first draft she wouldn't allow anyone to see; I had to wait til she went to school before I could read it (she left it on her desk, unconcealed, I didn't go looking for it). On that list was Little Chrissy and the Alphabeats.

A few weeks ago, we finally unpacked her Sesame Street Beans and got them up to her room. She's not been playing with them, apparently she just wanted to know they were there. She started invoking Santa Claus, something she has never done, because she wants Little Chrissy so much. Trying to explain to her that those dolls were never made had no effect. Possibly the myth of Santa finally made it into her consciousness. I don't know, and there's really no way to ask to get a coherent answer. Call it faith, stubbornness, or simply confidence, she is convinced that Little Chrissy and his backup singers will be under the tree Christmas morning.

Having had the experience of her not getting what she really, truly wanted, we were really not prepared to live through it again. I joked to my husband that all those felt foods I have been making for her have been practice leading up to making these dolls.

Initially, I thought I would make them from felt. Talking to my mom, who's sewn longer than I've been alive, she convinced me that felt wasn't the best choice and suggested flannel. We were even able to find all the right colors, right down to the blue/white stripes for one of the backup singer's shirt. For the hair, I found a company that will sell swatches of fake fur as "samples" but really, they're exactly what I needed. I sat down with Grover and sketched pattern pieces, and Mom cut them out for me when we went to D's IEP meeting.

After some tweaking, they are coming together quite nicely, and I'm pleased with the way they're looking. Then another shoe got tossed into my machine: the teachers in our district went on strike, and so there's no school. I've been working on the dolls when she's gone. Saturday, she had her daddy/daughter Christmas shopping day that they do every year, and I sewed for hours. Monday, I worked on them, and that night the call came that they were striking. I was able to get in some sewing in the morning before anyone was up, and will do more tonight when she goes to bed. I'm in pretty good shape, I think, since Christmas is still three weeks away. If I have to be sewing at midnight Christmas Eve, so be it. But she will have those dolls.

The biggest fly in my ointment right now isn't the teacher's strike, it's knowing that she added more dolls to her list, dolls I won't have time to make. Another 8 Muppets: The Cobblestones (featuring Mick Swagger; 4 dolls) and Dr. Thad and the Medications (4 dolls). To put it into perspective, one shoe took me 30 minutes to sew -- that's 8 hours of work just for the shoes! They're too small and too fiddly to do on the machine, so I have to sew them by hand, and I can't hand sew for 8 hours at a stretch (too painful). She will be disappointed, and I hope that disappointment doesn't overshadow any pleasure she has at receiving Little Chrissy and the Alphabeats.

Parents sacrifice for their kids. We go above and beyond at Christmas, making things happen, performing minor miracles, so our kids can have that joy under the tree. The wonder of the season may be tarnished with cynicism and disgust over the crass commercialization of the holiday (we seem to have skipped Thanksgiving, going straight from Hallowe'en to Black Friday this year), but our kids will know wonder and joy. More specifically, my child will know wonder and joy this holiday, or I'll die trying to give it to her.


----
UPDATE! I may have lost the pattern pieces, but I have a photo of them to give you an idea. Here's the long-delayed promised post about how I made the dolls: Sesame Street Beans Hack. I hope that's a decent start for those of you who are interested.

Monday, November 5, 2012

Art Therapy & Autism - Resources

Previously published in my blog Art for Autism, November 2011.

I was emailed a question about art programs for people with autism, a mom looking for programs for her son. That made me think that if she was looking for an art program, others probably are, too.

A quick Google search netted a surprising lack of information! I found some info about autistic artists, some little blurby bits on art therapy and autism, but (so far) not any info about art classes for these special kids. Since I'm not sure what you're looking for, I'm just going to post a bunch of links that I found (with a brief description) and hope you're able to find something useful for you and your family.

http://www.vsarts.org/prebuilt/artists/registry/artistlisting.cfm VSA’s online artist listing is an extension of VSA’s Artists Registry that includes over 1,600 visual, performing, and literary artists with disabilities.

http://arttherapyandautism.com/ ArtTherapyandAutism.com is designed to provide comprehensive and up-to-date information on the use of art therapy to address the symptoms of individuals with autism spectrum disorders (ASD). 

http://www.art4autism.com/  Welcome to the site of Quinn alias Mr.Q. Quinn is a young Dutch artist, diagnosed with classic autism at the age of four. This site is to showcase and to promote his designs, drawings and cartoons, which Quinn uses as a way to express himself. Have a look around and enjoy! Are you also creative and autistic, like Quinn? Submit your work and we'll put it on the site, in our Art Gallery! 

http://www.heartsforautism.org/ Working with persons on the Autistic Spectrum, HeARTs for Autism® encourages creative expression. As the person works with an art project, there are opportunities for them to integrate Sensory needs, interact socially with our volunteers, and express themselves in ways that transcend the limits they might otherwise experience daily with their autism. (Philadelphia, PA)

http://www.neurodiversity.com/art_poetry.html (has a long list of links relating to autistic artists)

http://arttherapyandautism.com/resourcesandlinks.html (books and websites about art therapy and autism)

http://video.google.com/videoplay?docid=-1748544490090881742&hl=en Spotlight Autism: Pure Vision Arts (video interview)

http://www.purevisionarts.org/ PVA’s philosophy begins with the belief that the arts are not a luxury, but a necessity in a civilized society, and that all people regardless of their disability should have the opportunity to express themselves. Art can provide profound pleasure and transform the human spirit and each person can experience and create something that is unique and reflects their individual personality. (New York City)

http://www.ncssinc.org/developmental-services/ds-music-and-art-program The Program for Adaptive & Expressive Arts (PAEA) delivers therapeutic as well as recreational music & art services, private instruction, and creative workshops to children and adults of Franklin, Grand Isle and Chittendon Counties of Vermont.

http://www.proteacher.net/discussions/showthread.php?t=5524 (a message board thread, "art activities for autistic children")

IN CANADA
http://www.autismontario.com/ (art program for autistic teens in Ontario, Canada; registration for the December program is closed, but you can probably request information about future programs)

ART APP FOR AUTISM  
http://www.autismpluggedin.com/2011/08/colorific-ipad-app-for-children-with-autism.html
This is what I've found so far. I have to get back to cooking Thanksgiving dinner, but I hope to devote more time to this in the near future. Happy Thanksgiving to you and yours!

Wednesday, October 10, 2012

Letting Go of Expectations

When I excitedly showed Diana the supplies I purchased to make her binder cookbook, she was less than thrilled. Perhaps she saw my solicitation of her help with it as more work (we'd just finished her homework). Perhaps she was simply unable to visualize what I was even talking about. I need to learn to let go of my expectations.
Insanity: Doing the same thing over and over again and expecting different results.
- Albert Einstein
My disappointment in her lack of enthusiasm is about me, not her. Her response was rather predictable; I've been here before. If I could simply learn to Be, let go of my expectations of her -- of everyone, really -- and appreciate what is rather than be disappointed in what is not, I think I'd be a lot happier. But I doubt I'll become Buddhist overnight...

Because I had the materials purchased, and because I am too damned stubborn to give up, I went ahead with my plans, and will allow her to love, loathe or ignore the results.

Raspberry-pink binder (clear cover, 1"), sheet protectors and coordinating papers.

The cover. The paper I got goes well with the binder; I'm pretty happy about that.

I ended up using a paint pen to outline the letters for Breakfast,
it was too hard to read against the patterned background.

Supper is mostly centered on the page (the design makes it look otherwise),
but Snacks is off-center, which bugs me.

With all the recipe sheets that she's come home with, in sheet protectors, as are the dividers.
 
Gluing on all those die-cut letters, trying to get them to be centered on the page and in a straight line took the longest. That was a bit of a pain.

I'm pleased with how it turned out. It will be easy to add more pages as they come home, and the sheet protectors will make it very functional to use. She'll see it when she gets home from school and sits down for her snack.

I'm trying not to anticipate her reaction.

Tuesday, October 9, 2012

Sea Change

Last night, on a whim, I asked Diana if she wanted some grapes with her cheese taco dinner, fully expecting her to say no. Imagine my surprise when she said yes! Then she ate one before she ate anything else. Then she refused to share any. Then she ate them all! Now imagine me trying not to make a big deal out of this, and make her refuse to eat anything healthy ever again.

This morning, I asked her if she wanted some grapes in her lunch. She tends to mumble, so she had to repeat herself a couple of times before I was certain she'd said yes. While she ate her frozen waffle breakfast (bleh, I know, but that's what she wants), I showed her a snack bag with about a dozen grapes in it. "This many grapes, or more?" "More." *gasp* Her lunch is 2 cheese tacos, a Nutri-grain strawberry fruit bar, a stick of string cheese, a treat (fun-size M&Ms or Hershey Bar) and a thermos of water -- every school day. If she wants to add grapes to that, I am completely OK with it!

Her response to "Smile!"

She's been eating a Flintstones vitamin with iron, because her pediatrician determined that she's slightly anemic. And eating them without complaint! She's been really good about eating corn, both on the cob and off. (Which reminds me, I want to do some research about prepping corn on the cob for the freezer...) This ready acceptance of the grapes is awesome! She's been asking for various felt foods, and because of the lack of griping about the vitamins and eating corn, I've been making the stuff without the caveat of trying something new first. The point wasn't necessarily to make her eat something new in exchange, but to get her to vary her diet, and add some plant material to it, which she has done. Maybe this is a sea change for her. Her diet is still limited, but if she's willing to add things, even slowly, that's growth! I'm proud of her.

2D felt food, lots of it.
3D felt food.
Prouder of some of it more than others...

She takes a real interest in her Foods & Nutrition class at school, so maybe that's got more to do with it than anything I'm doing at home, I don't know. Even though she expresses a real desire to cook, at home she's pretty reluctant to do anything. Maybe I'm not patient enough, or the things I'm doing are too complicated (too many steps, too long before the payoff). Maybe we should be making the recipes from her class (which come home as classwork papers). I should start collecting those papers into her own cookbook, in a binder, with page protectors. I think I have to run out and get felt the right color to make popcorn (yes, she asked me for felt popcorn), so I can get the binder and sheet protectors then.

Friday, October 5, 2012

Basketball?

A note came home with Diana last week, inviting us to attend a meeting about Special Olympics basketball. "All students enrolled in special education that want to play basketball are encouraged to attend. All skill levels welcome." She's always said that b-ball was her favorite in (adaptive) gym, so I asked her if she wanted to play. I have no idea if she understood the question I was asking her, but we're going to the meeting next week.

I think it would be an incredibly good experience for her. I can also foresee a lot of frustration on her part, as her idea of playing basketball (from what I have observed) means stealing all the balls and not sharing them. *shrug* We'll see.

Being an only child of antisocial parents, she could benefit a lot from the enforced social interaction of a team sport. It will get her out of the house (I'm assuming there will be practices involved, and games) and playing with kids her age. It will get her out from in front of her computer. (It will also get me out from in front of the computer, since I'll be the taxi driver.)

I am cautiously optimistic, knowing no more about it than I do.

We shall see...

Thursday, August 30, 2012

A Normal Life

This weekend my husband is going to WorldCon, his first vacation in 5 years. I'm so glad he's going. We had a rough summer, and while I think I may have had it worse, his was no picnic. In addition to not having some down time while Diana was in summer school, I ended up in the ER twice with an infection caused by complications of a gastrointestinal condition. (At least that's what the docs think it was -- they weren't 100% certain.) I don't like doctors, I don't like hospitals, and I resent being treated like a pincushion. My bruises that resulted from the needles still haven't completely faded.

ANYway. Yes, I am very glad he's going. He deserves the break. He worried about me, and I think I shook him up a little with that 104º fever. At the same time, I am jealous. This time last year, I was reminiscing about the awesome time I had on my latest trip to Ontario. My anticipated trip this year fell through, because of health issues on my end, and scheduling issues on the other end. And if ever there was a year I needed a vacation, this was it.

I hate this feeling of being jealous of my husband getting to do something so fantastic as WorldCon. The annual convention is a traveling one, it's not always in Chicago; last year it was in Reno, Nevada, and in 2010 it was in Melbourne, Australia. When he mentioned it to me, months ago, I insisted he go. And it's not even jealousy because I want to go, too, it's jealousy that he's getting to go somewhere and do something that's fun and interesting with like-minded people. I wanted to go to C2E2 this year; that didn't work out. I would have loved to go to Geek Girl Con, but that was the weekend right before Diana started school, and there's no way that was going to work out. Hell, I even though the Fan Expo up in Toronto would have been cool, but (say it with me!) that didn't work out. There are tons of small cons and ginormas cons all over the United States and Canada. There's a bunch within an easy drive from home. But how much fun would they be alone? And I'd have to go alone, because we can't take Diana to them (too crowded, and she'd be so bored).

I suppose what it boils down to is that I'd really like to have a normal life, whatever the hell that means. I don't want to have to worry about how we're going to manage to go to a con (or even on a date!) because we don't have anyone nearby who can stay with Diana while we're gone. I want to be able to book a hotel for the three of us and go to something like C2E2 and have her be engaged by stuff there, too. But we can't. Autism is part of who she is, and this is what my life is.

I live online. Sometimes it feels like I am living my life through the experiences of others, but when I am constrained by circumstances, living vicariously is better than nothing.

Some days I take naps, just so I am not conscious for a while.



Yes, I am aware: this is depression. I've been here before. I'll be here again. This is my normal...

Monday, August 13, 2012

Home Library & High School

In my effort to finish (finally) unpacking the boxes in the basement, I hit upon a practical solution for the many (many!) boxes of children's books: I would annex the guest bedroom as a children's library. This was perfect on a couple of levels: 1) there's no more space in the main library, what was a formal living room; 2) the guest room is right next to Diana's room, so she might actually read the books. It's been particularly confounding and a little heartbreaking that she, unlike both of her parents, is rather indifferent to books. She has certain books that she has loved until they fell apart, and her favorite books have mostly been alphabet and picture vocabulary books, but she's not the voracious reader we both are. I tried to read to her when she was small, but she wouldn't sit still and listen, and would chatter over me. Since she didn't seem interested, I gave up. (Perhaps if I had persisted, the outcome would have been different.)

When we packed up the house to move, the first thing we packed was the books. Those went to a storage locker and were brought to the new house once we got some more bookshelves to put them on (we had more books than we could shelve at the old house, many never made it out of the garage from the first move). Once we got the library set up, it was pretty clear there was no room for kids books, so they've sat in the basement for two years.

When I got the idea to put bookcases in the guestroom and use it for a children's library, I wasn't sure if my husband was going to groove on the idea, but he didn't even hesitate and said that was fine. I bought two tall and one short Sauder bookcases and started hauling books from the basement to the second floor. I use LibraryThing to keep track of our collection, so I took my little netbook up so I could add books to the database as I went. A few times, Diana would come upstairs and poke her head in to see what I was doing. The most rewarding thing was the expression of interest on her face. Well, almost the most rewarding thing. As I was nearly finished with the unpacking and shelving, she came in and sat on the floor next to a case of books that were some of her favorites and started paging through them. THAT was the best. She wasn't reading them the way I would, but she was happy and she had a book in her hands. Reading the Mama Be Good blog has given me food for thought, and not imposing my expectations on Diana, letting her be her, has been a reinforcing message there. (So thanks, Brenda, if you see this; that warm-fuzzy moment was nudged along by you!)


Unfortunately, because it is the nature of parenting, my warm-fuzzy feeling evaporated into worry and anxiety: today she starts high school. She "didn't qualify" for summer school, so she and I have been in each others' pockets all summer. (She was tested before and after Christmas break to determine if she was retaining things she had learned. Since her test scores indicated that she was retaining information, she didn't need summer school according to the school district. We will not be doing that again next summer.) Theoretically, I should be uncorking the champagne or doing handsprings down the middle of the street. Unfortunately, all I can think about are the million and one things that could go wrong. She's vulnerable. All teenage girls are vulnerable, don't get me wrong; the risks for being female are pretty huge, even in a supposedly civilized first world country. But Diana is vulnerable in ways that make me lose sleep, and most high school boys are barely human. And now she's going to be surrounded by them...

At least that's the image in my head. It's (probably) not a true one, because she'll be in a small, self-contained classroom, not mainstreamed, and her exposure to the school's general (neurotypical) population will be less than what I am imagining. As her mother, I worry. Because I know her better than anyone, I worry. Because I know that teenagers today are not like teenagers when I was one, I worry. I will be on tenterhooks until she gets off that bus this afternoon, and I can attempt to gauge her mood to see how the day went.

I've tried to dial it all back as best I can so it didn't telegraph to her and make her anxious; I don't know how well I succeeded. Every parent worries. I know this. But I am not "every parent" and she's not just some child, she's mine, and "worry" is kind of a tepid word for me right now. I'll probably settle down in a week or so. Probably...

Thursday, August 2, 2012

Felt Food & Performance Anxiety

My daughter has been enamored of pretend food since she was a toddler. She rarely ever plays with it, almost never pretending to eat it or serve it to other toys, she just hoards it. It tapered off for a while, and we told her we weren't buying more of the same things since she had a boxful in the closet already. Then she started requesting felt food...

I made her a deal: if she would try one new food, one full bite of something she'd never eaten before, I would make her three new felt foods. (Yes, I blackmailed my child into eating. It worked. Try it.) These felt foods were simple, flat (2-dimensional) representations of food, some rather crude. She seemed happy enough with them. Happy enough that they fill a box.

The box is about shoebox sized. On top is a pizza with extra cheese.

Earlier this summer, she asked for a "green riding hood," and we thought we figured out what that was. She kept saying "iron" and we thought she meant "iron-ons" and we went to the fabric store to look at felt appliqué iron-ons. She was unhappy with those, so we told her "show us" and she lead us to the sewing machines in the center of the store. "Iron" was apparently "sewing machine," though neither of us have any idea how she got those things mixed up. So I dyed a white sweatshirt green (she specified she wanted it to have a white zipper) and hand-appliquéed onto it a "happy strawberry." She seemed happy. (Though she wasn't thrilled that I didn't use the sewing machine.)

It was late when I finally finished it; I let her stay up
so she could have it before bed.

Happy to have figured out what she wanted (or so we thought), I noticed the store was having a huge same on t-shirts, so I bought a pile of them, to sew on felt representations of the various "happy" foods inspired by Heidi Kenney. I made a t-shirt with the milk carton on it. She was not as thrilled. It wasn't what she wanted, and now we're both frustrated. Now what?

I'm not exactly sure when, but some point this summer, she discovered Etsy. More specifically, she discovered felt food on Etsy. No longer content with the 2D variety, she finally managed to communicate to me that she wanted stuffed felt food - 3D representations. THAT was what she wanted when she said "iron" (and meant "sewing machine"). She did still want the green riding hood, I do think we got that one right, but she must have thought I was an idiot for making the milk carton t-shirt...

A pre-high school physical revealed that she is a bit anemic, and the doc wants her to eat more (ha! try ANY) green foods, more (again, HA!) red meat, and take a vitamin with iron. I spent 30 minutes reading packaging at Walgreens, trying to find a vitamin that was going to work for us. I ended up with Flintstones chewables with iron, and a liquid vitamin supplement with iron. I figured if she couldn't tolerate the Flintstones, we could use a medicine dropper for the liquid. Turns out, the Flintstones are working just fine. (My husband and I were both stunned. The first few times, we watched her to make sure she was actually eating the thing, and not hiding it in the library or sneaking it to the dog.)

ANYway. The same rule, modified, would apply to the 3D foods: Try something new, get one new stuffed felt food. Green food... ok... butter lettuce. Reasonably innocuous, and not as devoid of nutrition as iceberg, right? So I took some cheese slices and rolled a piece of lettuce inside, and told her it was a "salad stick" and if she ate that, she could have a felt food. It worked! (Mental handsprings!)

Not to scale: The purple blob under the grapes is purple cabbage,
and to the right of that is a head of lettuce.

I started adding pieces of lettuce to her cheese tacos, and she ate that, too. Felt food is a huge motivator for her. Wanting to get more iron into her, and a few more vitamins, I switched from the butter lettuce to baby spinach. Again, success. I'm so excited that she's eating it without complaining or gagging, that the "new" food is no longer a requirement - eat spinach and a vitamin, get felt food. The red meat is still going to be an issue, unless I can convince her to eat hamburger on her pizza.

I was talking to a friend about all the felt foods, and they asked me what she did with it. I explained that she didn't do much with it other than add it to a hoard. They told me that I was a good mom for making all this stuff; I tried to shrug that off - it's only time and felt is cheap, plus it's good practice sewing. No, I was told, I was doing the "right thing, not the easy thing" and for that they considered me their "parenting role model."

I was stunned.

I am rarely at a loss for words, but for a moment, I didn't know what to say to that. Finally, I said "thank you." I was, and am, humbled and touched by that. Coming from someone I consider to be an excellent and loving parent, and honestly someone whom I envy, it was very humbling. And wow, no pressure there, nope! I don't think I've ever - knowingly! - been anyone's role model, even my daughter.

And you know, it also felt pretty damn good. Diana rarely acknowledges the lengths I go to to make her happy, and that's fine. I mean, I'm pretty sure I didn't acknowledge all the stuff my parents did for me, either, so that's really sort of a kid thing, not an autism thing. Rarely do I get much praise or recognition, and I don't expect it. You don't meet your garbage man on the curb and tell him what a great job he's doing, do you? (Well maybe you do, in which case you're a better person than I.) Anyway, my point is, I'm just doing my job. I'm her mom, this is my job: make her healthy and happy and help her grow.

My friend's timing was pretty awesome, too. I've been feeling pretty low; it's been a rough summer for me for a number of reasons, and I'm happy it's nearly over. Getting a pat on the back was unexpected, but needed. Sometimes something as simple as "you're a good mom" can mean the world. So, to my dear friend, again my heartfelt thanks. I needed that.

Sunday, July 15, 2012

Distractions

Yesterday, Diana got a small package from our alma mater, Drake University. The package contained a postcard welcoming her to the Drake Legacy Program. Basically, children of alumni get a break on tuition, and they're getting their foot in the door early.

At first I was amused, wondering if they'd be so eager to recruit her if they knew she was autistic. It was a little glimpse of normalcy, you know? Now, I am trying to distract myself from the depressing reality. I'm working on a genealogy project (data entry), listening to music in languages I can't understand, trying not to think about how Drake would erase her name from their database in a heartbeat, knowing they're wasting their time recruiting someone who is not college-bound, trying not to think about other parents who have children who will follow in their parents' footsteps... trying not to think about those parents who have normal children leading normal lives with normal worries and concerns...

Should I email Drake and tell them they're wasting money and time, since our child is a dead end for them? The mail won't stop if I don't, and every piece of mail they send her, every catalog extolling the virtues of small, private college education will be one more reminder of how my child (probably) won't have that experience. One more reminder of how my parental experience is so very different from that of the majority of my classmates...




Friday, April 27, 2012

Milestones

We are not planning on attending/participating in our daughter's 8th grade graduation next month. Crowds, noise and waiting -- three things Diana does not care for. On the one hand, it's an opportunity to participate in an event with her peers. On the other, it's a situation that could spell several days of overloaded kid. It's a milestone that should be celebrated, but by abstaining, we're respecting her limitations. If we go, it's for us; if we don't, it's for her. Who's more important?

In the grand scheme of things, missing it isn't much of a big, right? In our old (smaller) school district, there was kindergarten graduation and graduation from grade to middle school. They were smallish ceremonies that she seemed pretty oblivious to, honestly, other than to want to leave sooner than later. So why make her uncomfortable for something that we don't have to attend?

I got email from her teacher this afternoon, asking if we were planning on letting her participate. My husband and I had talked about it when she came home from school with graduation information in her backpack last week, so I was able reply immediately. And wondered as I did if she'd think we were doing something wrong by not giving our daughter a chance to grow with her classmates. I suppose all parents second-guess their decisions, but sometimes it seems like that's all I do...

Uncertainty and doubt abound when you have a child who can't necessarily communicate clearly. That can be a sharp jab in the chest sometimes. Hallmark managed to dig the knife pretty deep last night, in this commercial. If you don't want to go watch (it's pretty short), here's a transcript:
[various moms speaking]
Tell me that I've been a good mom.
That I actually taught you something.
Tell me I'm ready. [listening to a sonogram]
That you look up to me.
Tell me you like spending time with me.
That I'm doing this right. [with an infant]
Even if I'm doing it alone.
Tell me you're proud of who we are.
Just tell me.
[voiceover] For everything moms need to hear, there's a Hallmark card.
I think I can count on one hand the number of times I have gotten a spontaneous I love you from my daughter. There's nothing on that list of things "moms need to hear" that I am ever likely to hear from her. She's happy and healthy and that counts for a helluva lot, in my book. Every unasked for gesture of affection, every silly smile, every thing done without being asked -- these are the milestones that are truly important. Those are the moments truly worth cherishing. But oh god, that doesn't mean it wouldn't be nice to hear the words anyway...

Tuesday, April 24, 2012

The Blame Game


I originally started writing this in response to another mom's blog post, but didn't want to hijack her blog with my rants.

What is it about being a mother that seems to be steeped in guilt? I think that somehow, somewhere, women are either hard-wired to self-blame, or it's passed from generation to generation like a gene for cancer. I wanted to have a child, but my husband was unconvinced the time was right. Three years after her birth, she was diagnosed with autism. Shortly after, I started looking for the reasons why it was my fault. I wanted the baby, so my selfishness was being punished. Then the usual suspects: I didn't read to her enough, I didn't nurse her long enough, I didn't hold her enough/held her too much...

Mothers need to stop this line of thinking, immediately. I don't know how much of this is linked to Bettelheim's Refrigerator Mother theory (may he roast in hell) and how much is just a legacy of guilt we carry from mothers to daughters, but we have to stop. We do such a disservice to our children, and to our SELVES.

Along with the guilt and shameful thoughts, there's the things people say intending to comfort. (And then more guilt for feeling resentful about words meant in kindness.) People have told me that A) God has a plan, he meant her to be this way; B) She chose to be like this on this turn of the incarnation wheel; C) I have something to learn in this life, and she was given to me to learn; D) God never gives us more than we can handle. Bear with me, I'll take those one at a time. (And very likely offend people on the way.)

A: God's Plan
I refuse to believe in a god that would deliberately make a child's life painful and difficult. That is not the action of a loving god, that is the action of a psychotic god. Autism isn't just some little ordeal to overcome, it's a life-long challenge of sensory overload, a lifetime of being misunderstood and frustrated, years of being locked in a body that can't communicate effectively. You can keep your god, I want no part of him.

B: Choosing the Challenge
Certain ideas around reincarnation suggest that the soul being reincarnated gets to choose his/her parents, as well as the sort of life that he/she will have in the next lifetime. I'm not convinced that there is reincarnation, but choosing life with autism seems insane to me. The sort of thing that only a very holy person -- someone on the verge of attaining Nirvana -- might do, just to see what it was like. I call bullshit.

C: Lessons for Mom
Another reincarnation idea -- Diana has a challenged life so I can learn something. OK, let me get this straight: this innocent child has a lifetime of difficulties because I need to learn something in this lifetime? I suppose a Tibetan would tell me that she B, chose the challenge, because C, I needed to get something out of this life. B and C are hand-in-glove, I suppose. Bullshit again. I'm just not Buddhist, and I can't subscribe to this.

D: You Can Handle It
This is one of those trite little homilies that's handed out like Hallowe'en candy whenever there's a tragedy or challenge involved. God never gives us more than we can handle. (And if you mention suicide, people will just say that god planned that, too.) Frankly, I prefer Nietzsche: "What does not kill, me makes me stronger."

There are days I cling to life by my fingernails; every day brings a new challenge -- and they're cumulative! It's not like a clean slate every morning. When each fresh challenge piles on top of a new one, by the end of a week, it's a lot. Now imagine the end of a month. Now a year. Now fourteen... I've handled it so far without losing my sanity or my will to live,  but who's to say what might be the final straw? Oh wait, "god" knows, and he won't pile on too much. (And there's just no arguing with the faithful.) With every night I lie awake with despair, with every thought I have at walking away, the guilt I feel for bringing her into the world in the first place... this eats at my Self. All that erosion is bound to wear me to nothing, eventually. Until you know what it is to live my life, don't tell me what I can or can't handle.

I can appreciate that people who have said these things to me have meant it as comforting. But when you are neither Christian nor Buddhist, the words are meaningless. Autism is biological. It is a brain condition, probably genetic in origin. It's not divine, it's not a choice. I suppose if I was going to be really harsh about it, I'd call it a defect, insofar as we understand the brain and how it works. I don't care for the idea that my child's brain is defective, but there it is. I didn't cause it. Possibly a combination of genes from her father and me meshed in such a way to produce enough "on" switches in her DNA to produce the condition we call autism, but there is no blame to assign. I didn't cause it. My husband didn't cause it. It just IS.

Believe it or not, there's a part of me that envies people who do have faith. They are comforted by the words of their priests and pastors, ministers and monks. I am not. I want facts, not fantasy. I want data I can read, science that is replicable, numbers that add up. Numbers aren't comforting, though, numbers don't reassure that everything will work out. However, numbers don't offer false comfort, either. They won't tell me that everything will work out, when there is absolutely no way to know that for certain. Hope was the last thing in Pandora's box; that and a buck will buy you a candy bar. (Which you will then feel guilty for eating, because it cheats on your diet.)

Miss Mary Sunshine, I ain't. Polly Pragmatism, maybe...

Friday, April 13, 2012

Reevaluation Results

This morning, my husband and I go for the results of our daughter's neuropsychological evaluation. I'm not much looking forward to it. I keep telling myself, we already have a diagnosis of autism, there shouldn't be any surprises. But that's usually when the Universe does something tricky and throws you for a loop. (Oh it's fun being me sometimes...)

So anyway, the idea is that we will be able to have this conversation with the doc uninterrupted; the appointment was made when Diana'd be in school and my husband took the day off. The doctor will discuss her findings with us, she'll give me back my file box (yes, a whole file box of paperwork - autism generates a ton of it), the end. I guess what has me so anxious about her findings is the recollection of overhearing some of the things that I could hear Diana saying/responding to the tests she was given. She was asked to identify photos of children and adults as "happy, sad, angry or fearful" and then identify tones of voice (children and adults) with the same four options. The test administrator nearly always gave the options in that order, and in those words. Diana most often responded - when I could hear her - with "fearful," parroting the last option. It was the end of the second day and she was tired and frustrated; just how useful can those test results be? I know she knows facial expressions. I know she can recognize tone of voice. But A) the administrator should have mixed up the options more, and B) "fearful" is a stupid word (particularly with a learning disabled child); "afraid" or "scared" are better choices. It won't make any difference with the results, but I do intend to bring that up with the doctor - she wasn't the test administrator, and I don't know if she was in another room observing or if that session was recorded, but she should know.

Because there was at least one test that I know Diana did poorly with, I suspect she didn't test well the whole two days. It's hard for strangers to get information out of her; that's been an issue all along. When she gets to know the people she works with, and likes them, she typically works very hard. Her team at school always tells me that she makes good progress, works hard, and is a joy to work with. I know the doctor will not have seen that from her.

And I guess that is what has me conflicted. Part of what we're attempting to do here is indicate that she's not capable of being independent when she's 18, and become her court-appointed guardians. We can't just show up at a courthouse on her 18th birthday and announce this without some proof on our side. What we're doing is laying groundwork for her becoming our ward. Unless she has some very significant growth and progress in the next three years, that's exactly what will need to happen. The worse she does on tests like these, the better our case for guardianship. But this is my child - I don't want her to test badly. I'm really not looking forward to this morning.

Several years ago, I had a meeting with Diana's social worker, apart from the typical IEP setting. At some point she asked me how I felt about all this -- "this" being the tests, the meetings, the special education process. I told her flat-out that it was depressing, it makes me angry and sad, and that I hated it. I love my daughter and will do anything for her, but I hate the process. She looked flat-out stunned. I don't know if it was my matter-of-fact tone of voice that made the statement so badly, or if I was the first person to ever answer her question that way. I don't know, and didn't ask. At the time, I was a little amused; still am, actually. (Shocking people has always been entertaining for me, particularly when I'm shocking them with truth.) It's been probably 8 years since then; I still feel the same way.

UPDATE, RESULTS: I really like this doctor, and my husband seemed to like her as well. She's candid without being harsh. Unfortunately, her news was not what you'd call uplifting. There were no surprises; we live with this child, we know, roughly, what she can/can't do. And the news was that she's functioning at levels between kindergarten and second grade, depending on the skill. We know the abilities are in there, somewhere, but the tests can't pull those things out of her head, she has to produce them herself. And she can't.

Tuesday, March 20, 2012

Challenges

The last two days, Diana had a neuropsych evaluation, the first since she was initially diagnosed when she was 3. It was hard for her, boring, questions and tests from strangers. I could overhear her frustration, and on occasion, hear her giving wrong answers to questions I know she could answer correctly. My husband and I, and her teacher, all filled out forms and questionnaires. I took in with me about 8 pounds of papers for the doctor to review, including 11 years of IEPs -- about a 2 1/2 inch stack of paper. I also had a 2 hour interview with the doc, while Diana worked with a couple of other people. Diana has bounced back, as children will, and is looking forward to school in the morning. I am exhausted and drained.

We did this because she's 14, because when she reaches her legal majority in 4 years, it may be necessary to have her made our ward. As it was pointed out to us, and we did realize, starting that paper trail needed to happen sooner than later. It is worrying as a parent, to know that your child may not be capable of being independent, leaving for university or getting a job, when other kids will be. It's just one more isolating thing that separates us from the other families in the neighborhood.

One nice thing that's happened is that she doesn't meet the qualifications for summer school. She is retaining what she learns, and the point of summer school is to keep kids from backsliding in their education. As was pointed out to me by a special ed. teacher friend, "it's a good thing; she's growing." This frees up the entire summer, offering the possibility of a family vacation. Which has its own problems. With the TSA aggressively searching people, I cannot, cannot! subject my child to that. It's hard enough to try and teach her the concept of "bad touching," but if she has retained any of that teaching, now I have to tell her it's OK for this stranger to touch her when she doesn't want to be touched. Not an option, not for her, and frankly, not for me.

Driving is fine, she loves to travel in the car, but gas prices are getting outrageous, and it's not even Memorial Day. She also wants to stay in a hotel and swim in the pool. OK... but we can probably do that without leaving the county, let alone the state. And watching her splash in a hotel pool isn't my idea of a good time. My husband and I would love to visit some of the National Parks out west, but getting her to walk anywhere that doesn't involve a McDonald's is like walking a cat on a leash. Except with a lot more griping.

I thought it would be fun to go to the Hershey Experience, in Hershey, Pennsylvania (she is a big fan of their chocolate bars), and also to Easton to the Crayola factory. Then I looked up the driving distance... it's over 700 miles, about 13 hours in the car. Ouch. That's a helluva drive when she might not want to be there in the first place. Admission to both those are very reasonable; the biggest expense would be gas and lodging. So, strike one on that idea.

I suggested something closer to home in Ohio, the Neil Armstrong Air & Space Museum. But with that, we have the issue that Diana would be mad that she couldn't FLY in the rocket. Plus my husband is pretty annoyed with the state of the space program, so she'd be mad, he'd be mad, and I'd just be tired. Strike two.

We've tried things before. They usually don't work out. The best vacation Diana has been on was southern California, and she wants to go back. We're not going to SoCal. (Not flying, too far to drive.) The best vacation that Marc and I have been on was Hawaii. (Not flying, can't drive, plus it's too late for reservations for all the things we'd like to take her to.)

No suggestions are forthcoming from my husband. My suggestions are impractical or not regarded enthusiastically. So fine. I give up. They can stay home, and I'll take a vacation alone, just like I have for the last 3 years. I don't know why I bother.

I'm tired, I'm frustrated, and I have a headache. Sorry for the defeatist attitude, but you know what? this is REAL. It may not be uplifting and heartwarming and sweet, but it is honest...

Saturday, January 28, 2012

Testing, Questions

The day will likely come that we apply to make Diana our ward, since it seems unlikely she will be capable of making decisions, safely, for herself once she turns 18. At 18, doctors no longer need to talk to us, she can control her own funds, etc., unless she is declared incompetent and we make her our ward. The process of doing so must include paperwork that backs up our claim, and my mother-in-law made a rather pointed suggestion to my husband that we should start gathering that paperwork now, to start the paper trail, proving our claim and her need. Diana turns 15 this year.

Since she hasn't been seen by a neurologist or a psychologist since she was 3 for the initial diagnosis, this is necessary anyway. We really don't know what her level of cognition is, what her mental age is, how much of what she takes in that she really understands. I hope that the doctor and all her tests can shed some light on this.

Something else, things I've read, things I've heard, made me wonder about myself. Since her diagnosis, watching her grow, I have seen things in her that I recognize in myself. I was beginning to come to the conclusion that nearly everyone has some autistic traits, when really, I think it's me. I found a quiz online (yes, yes, I know, online quizzes are about as valuable as wooden nickels, probably less so), that tests for the likelihood of Asperger syndrome. "The goal of this test is to give a reliable indication of autism spectrum traits in adults." I took it, carefully considering my answers. (One of my college classes was on psychological testing, and some tests can be "defeated" if you know what to look for.) My score indicated that I am "very likely an aspie." Somewhat surprised, I considered some of the implications. If it's true, it could explain a good many things about why I am the way I am. It could also explain why Diana is the way she is, if her mother's also on the spectrum. I considered that carefully, how did I feel about that? Mostly what I felt was relief. It wasn't something I did, or didn't do. It wasn't anything but simple genetics. Not my fault. It might also explain why I have a much greater understanding of her than anyone else. Of course, since I work from home, I have spent more time with her than anyone else. She and I speak the same language, but very different dialects, maybe the difference between Parisian French and Québécois French.

I told my husband about the quiz and the results, and basically he thinks it's bunk. I asked him to humor me and also take the quiz. He scored as "likely neurotypical," which stunned me. I rather expected him to score more like I did. (Which may, in itself, be a symptom of AS - expecting others to think as you do.) I stressed that there was really no point in spending the money and getting a formal diagnosis; a diagnosis changes nothing, after all, it's not like there's some medication I should be taking, some therapy I will seek out. I told him all I wanted was his continued patience and understanding. 

Since that discussion, I've told only two other people, friends I respect, one of whom has some experience on a professional level with autism, one who was diagnosed as a child with ADD. Neither of them seemed convinced; one brushed it off with a question "what does it change if you are?", the other cautioned that AS was the "new ADHD" - a fad diagnosis - but was a little more open to the idea. 

The trouble is, I'm going to obsess over this until I find out from a professional, and if they diagnose me as neurotypical, I'm going to think they're wrong. My self-diagnosis (always a dangerous thing!) makes sense. it answers questions that I've asked since Diana received her diagnosis. The social phobias, the obsessiveness, the odd clumsiness, pattern-finding, etc., etc., etc... all explained under the umbrella of Asperger syndrome. And with that I have gained a sense of relief: I'm not weird, I'm an aspie! 

When Diana goes in for her testing in March, I intend to ask the neurologist about this. We'll see... Hey, maybe we could be part of an ongoing study somewhere!