Showtime, or, Sometimes we just need our moms

Ellie's class did some songs for the holidays. Parents were invited, so of course I went. She apparently had been fine until I showed up. Funny how moms can wreck a good day without meaning to! I ended up sitting with Ellie while she did her parts. I think I just threw her routine so off that she couldn't regroup. Poor thing! But she did great, and now we're on break. Lord knows I need it too.

I am Special

Ellie's school put on their first little preschool show on December 4. The theme was "winter" (come on now, it's a public school) and Ellie's class sang two songs, "The Friendly Snowman" and "I am Special." Ellie sat next to her teacher, Miss Nicole, and was able to do all the gestures for all the songs. She didn't seem to sing them. Of course, when we got home, she sang both in loud voice, with gestures, and even a little dance. Stage fright must have gummed her up a little. I also showed her the video we made of the performance and now she calls it "Ellie's show." She likes to watch it before nap and name all the friends she sees in it.

This week, Ellie was also the "Soaring Star" at school. I made a poster of all her favorite things (Thomas the Tank, Harold and the Purple Crayon, Sid the Science Kid, plus photos of the Children's Museum, Farmpark, the Zoo and Turtle Park) and the family. Her teachers said she was able to talk about her poster and just loved having it in the room. She is so awesome. This is what hard work brings--success.

The Changeling

School has made a dramatic difference for Ellie. I really can't explain the ways in which I see her true personality emerging. Cooperative. Sensitive. Funny. She seems to want to exert control over parts of her life, and then she's content to let me still run the show in many respects. Her functional communication is enormously improved. She has mastered "yes" and "no" and is internalizing many of the social skills that ASD struggle with. She is an expert describer, categorizer, organizer of things into groups and subgroups. I believe she is math oriented; I think that skill comes easily to her. She doesn't like to try things unless she believes she'll be successful. I wonder who she reminds me of?

Jenny McCarthy, or, You Knew This Was Coming

"We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."

from http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html

1. The last time I checked, the gastrointestinal system and the neurological system were not the same thing. I mean, I'll ask Dr. Horn, who lives around the corner and is a real, live, breathing neurologist, but I'm pretty sure.

2. If this child had several food issues, and lots of kids do, then sure, starting a diet that would assist with his ability to properly digest food would be appropriate. But not every kid on the spectrum has this. Ellie doesn't. The kids in her class don't.

3. Here's the problem: lots of parents start a crazy diet and simultaneously start behavior therapy and speech services and whatever else they deem appropriate. So the child begins to improve. Well, is it the diet? Or the services? Without a control, who knows? McCarthy says she did one before the other. I can't believe any parent who knew behavior services were needed would wait out a diet before starting with professionals. Who says, well, little Snowflake here needs speech, play therapy and OT, but I'm just going to go with this diet first? Please. Basic research rules tell us, no control, no way to know, no data.

"We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role."

4. FAIL.

5. People are thanking God and Sabins & Salk for eliminating polio. Childhood disease kills children. KIDS CAN DIE FROM THE MEASLES. Vaccines do not cause autism. Science says so, and I go with science over Jenny any day. This is how the kid's brain is, how it was hardwired. That's difficult to accept, but it's better than playing the blame game. On everyone.

I'm glad Jenny's son has improved. I wish his mother weren't a wackjob. She should be talking about the benefits of early treatment, intensive therapy, and supportive parenting, not pointing her finger at the medical profession, who I truly believe want to do everything they can to work with this problem. I know the doctors we know do.

Get your kid vaccinated. You will save his life. He will thank you.

Rocking the Pixie, or, Miss Hepburn, We're Ready for You

Ellie is a hair twirler. It might be just a thing she does, like kids who suck their thumb. The problem is that her hair gets matty and a little wonky looking. So we rock the pixie. Sal cuts it, of course. Here's the thing with kids with ASDs--sometimes haircuts are a no-go. Let's not even get into haircuts in a salon with people chattering and hairblowers going. So what we do is go at the end of day, with no one else getting serviced, after nap. That seems to nip the anxiety nonsense in the bud. Now lest you think I'm just a no-frills hair kind of gal, if the girls would let me do their hair, I'd do it. I am all about the hair dodad. But they won't, so it's short hair for them.

What Barack says about ASD's

http://www.autism-society.org/site/DocServer/ASA_-_Obama_letter.pdf?docID=9642

Business card idea

I've seen a lot of signs, bumper stickers, etc. for kids on the spectrum and some are cute and some are obnoxious. I want to get one for Ellie that says, "I don't do small talk," because I think that's age-appropriate and cute. There are some that are so in your face, that I wouldn't let her wear them. And I'm coming from a place where Ellie has both a CASH t-shirt and a Ramones t-shirt. So I'm pretty loose about some things, but not others.

I also think I may get a business card made up in case Ellie just loses it in public and somebody feels the need to say something, or get that "look," the one that says, you need to control that damn child. I was thinking of something like this:

Thanks so much for being interested enough in my child to watch her behavior so closely, or perhaps feel the need to remark to me about it. I know you probably think she's a willful, disobedient child--but nothing could be farther from the truth! She has an autistic spectrum disorder (ASD) and when her brain gets too much input, too much stimulation, she struggles with being able to process it all. And because her disorder includes a speech delay, she can't always put into words what she's experiencing, or what help I can be to alleviate her discomfort. Thanks so much for your concern, but I assure you, we've got it under control. If you have more questions about ASDs, feel free to check out www.autismspeaks.com.

Yes, I think that's a good idea.

Preschool!

Today was Ellie's first day of preschool at Gearity. She's one of 18 kids, 8 with challenges, 10 who are "typical," plus four teachers and a host of other professionals. I have to say that it went well. There were no tears (from her), no nonsense, just exploring and a lot of look-see, like what is this place and where is my place in it? I think she may buddy up with a little girl called Olivia, but I'm not pushing her towards any friendships that aren't of her own devise. I need to let her find her own way socially. Will tomorrow go as well? When it's a real three hour day? Who knows?

See also Three Degrees Later....

My theory about toys is this: it's not about what the toy can do, it's what the child can do with the toy. This is why I am way, way over toys that blink, sing, shake, sparkle, and generally act like a mental anesthesizer for the girls. I realize that a lot of research goes into toy manufacturing and marketing. However, after working with Ellie in play therapy for three months, plus everything else I've learned about early childhood in graduate work, I am convinced unless toys encourage children to ask the following questions, they need to be thrown out.
--what does it do?
--what CAN it do?
--what can I do with it? (how can I, within my power and knowledge right not, act upon this thing at this moment)
--what else can it be used for?
--if I do this to it, what happens?
--can I mimic something I already know with it? (I have found this to be true with anything that vaguely resembles a phone...if it looks like it could have a receiver and a mouthpiece, Helen is talking into it).

Right now I am into wooden toys, not for their greenness or hoity-toity "it fits into my design asthetic" ness, but because they are very "blank" for Ellie. They require her to explore and act upon them in ways a lot of toys do not. I am interested in Plan Toys especially, and am going to browse their website soon.

Have you seen this?

http://www.autismthemusical.com/beta/index.php?session=myhomepage&id=

You should.

Unfortunately, not unusual.

http://www.msnbc.msn.com/id/25788692/

This guy unfortunately has a world view of ASD that a lot of people have. Some of them are in my own family. At least Savage says it out loud so people know he's an idiot. People I know just say it behind my back.

Yep, There's That Sea Cow

The Cincinnati Zoo has a manatee exhibit. I love manatees--there's a canal near my aunt's house in Naples, FL that is rife with them. The girls had never seen them, so when this enormous thing goes swimming by, it's quite a sight. Ellie used all functional language to express herself. "Yep, there's that sea cow. And there's that other sea cow. Here it comes again. It's floating. It's floating in the water." There was no singing the Muppets, or using words from Goodnight Moon or Click Clack Moo. These were all Ellie's ideas. A little formal? Yes. That's not unusual. She may always have a bit of formality in her language, maybe less the hyperactive squealing we see in Emma when she's excited about something. But that doesn't diminish Ellie's continued mastering of using language to communicate her ideas about her experiences in the world. Once again, THERAPY WORKS.

J Jump Joyful

Sesame Street J-Jump

J jump joyful jumble around.

Juniper, Jan, Jane, John.

J jump joyful jumble around.

Jack-in-the-box jumping all over town!

Jingle jangle junk summer day.

Big J swingin', flyin' singin'--

J jump joyful jumble around,

On a just nice day with the jumpinest J's in town.

Jingle jangle junk summer day

Big J swingin', flyin' singin'--

J jump joyful jumble around.

On a just nice day with the jumpinest J's in town.

OK, this was not how I sang it, or in tune, and if you want to learn more about this song's history, go here. http://muppet.wikia.com/wiki/J_Jump . Ellie loves it, and is mimicing the video for it, in her slow-mo, highly psychadelic, sort of 1970ish arm waving way.

This is my first movie, so John Huston I am not. Groble has a much better video on his blog, and he even makes fun of Dick Cheney. But it's fun to see the kids rocking out.

Dr. Wiznitzer, or, Birds of a Feather

http://casemed.case.edu/dept/neurology/Wiznitzer.html

We had an appointment today with Dr. Wiznitzer, who is a pediatric neurologist. We didn't need to see him, per se, as there has never been any indication that Ellie has a chromosomal disorder that would manifest as a neurological problem, or that Ellie has any of the other disorders that neurologists treat (ADHD, seizures, etc). However, our regular pediatrician (Dr. Joyce, or "Dr. Kelly" as Dr. W. called her) felt that he should see Ellie and put his two cents in. First, it only took us 3 months to get an appointment (I called in late April)...Dr. Joyce had predicted that I would have to wait until at least October. Second, he is very...spectrumy. He has an interesting social demeanor and an unusual lilt to his voice. But he looked Ellie over, and asked some good questions, and agreed that although Ellie falls on the spectrum, she is "just super...she is going to be just fine." He didn't recommend any additional (traditional) therapies ("just be more time and money, and you're getting the biggest bang for your buck already") and said that we were smart to start early (as Nancy Roizen says, "these are the golden years"). He steered us away from unconventional (read: untested, unreviewed, and often dangerous) treatments that are often hurled at parents who are desperate for help. He also noted that unless an undesirable behavior is related to Ellie's ability to communicate functionally or socialize appropriately, it's probably just a 3 year old tantrum. Boy, did our ears perk up with that. She won't get away with much now. Stinker.

Having Friends

We had a neighborhood playdate at Gearity School last week and Ellie took the opportunity to hang out with this little fellow, who is a few months younger than Ellie is (but just as verbal). The best part about this situation is that she asked him to sit next to her and offered to share her berries with him. It's not easy to know how to be friends, but Ellie is really coming into her own with it.

I have some revolutionary ideas about toys which I am going to blog about in the next few days. I just didn't want to go too much longer without a post, because Ellie is just taking off like a rocket.

Look at this kid.

Ellie has come so far, so fast. Her gaze is direct. She has focus. She can really play with other kids. And man, can she do some mean yoga.

Face Playing

Here's another example where learning social cues is so critical for kids with an ASD. Here Ellie has mastered mugging for the camera, instead of giving me the blank canvas I was seeing for a while. She seems to have a theory of mind with the camera, that she knows what it's for, how she can interact with it, and why ultimately it's a fun toy (she loves photos). She can mimic faces, play face games, and sustain eye contact for as long as any so-called "typical" kid. And gosh, she's just so pretty, who wouldn't want to take her picture?

What I Did This Week, by Ellie

1. "gross motor planned" how to work the scooter at Granny's

2. took 3 hour naps everyday to rest her brain--napping is extremely important for cognitive development and memory skills

3. asked Emma to "please share" a toy, instead of grabbing, or getting upset

4. reminded herself to "smile!" when I took the picture of her at the table

5. attended the annual Parma Heights Memorial Day parade and didn't blink an eye when either the band or the firetrucks went by (high-frequency sensory input)

6. Kissed Lisa, Debbie, Granny and Sally Hicks "bye bye"--spontaneously

Then. Now.

Happy birthday, my first one, my most perfect moment.

That big smile comes easier now.

Ellie is more free in expressing her emotions. She always expressed enjoyment, laughter, even giddiness, but now it comes like water--she doesn't have to think about it, it just flows out of her. Here she's watching her sisters climb the steps at the twisty slide at Noble School. It's as much fun to watch the twins slide as it is for Ellie to do it herself.

And look at that direct, unfaltering gaze. We didn't see that even three months ago. THERAPY WORKS.

Let's go swimming with Dad.

We hear this every Saturday morning. Ellie apparently understands that on a day when she wakes up and Daddy doesn't go to work "to make our money," we go swimming. She loves it and is totally comfortable in the water. I could overanalyze it and say, oh, it's a sensory thing, it fulfills some tactile need, but let's face it. Water is fun. You don't need 10 hours a week of therapy to figure that one out.

I'm not surprised.

http://www.msnbc.msn.com/id/24465288/

Twist Tie

Ellie's only "bad" habit (other than bursting into our room at 6 am lately to "snuggle"...I appreciate the sentiment but not the hour) is twisting her hair. She does it when she's nervous, or a little overstimulated. Admittedly, she gave herself a bald spot, which Sally Zarlinga and I nipped in the bud by giving her a pixie. Less to grab, less to twist. She still tries, tho, as is evidenced by this snapshot from dinner. She was happy, eating chicken, "broccoli...no!", brown bread and mashed taters. Some kids bite their nails, or suck their thumbs. This, too, shall pass. PS. The chocolate smear on her sleeve is from Asher Baskind's birthday cupcake. The red spot on her other arm is her world-famous boo boo. Emma tries to hug Ellie's arm every day and whispers, "Boo boo. Boo boo arm Ellie." As bad as it looks, this girl took it in stride. Who's to say kids like her can't roll with it?

Affect is Everything.

We hear a lot about kids with ASD not having "good affect" or having a "flat affect." Affect is how emotions, experiences, etc. register on the face and in body language. A little kid going "ooooooooooooo!" with big bright eyes when she sees a balloon? Affect. A little boy scrunching up his face when he sees a truck and going "chugga chugga"? Affect. Ellie's affect can be a little flat when she is using echolalia to express herself. it's like she knows that these words, these ideas, aren't really hers, so she doesn't invest herself emotionally in them. However, when she tastes the yum of a fresh blackberry during picnic snack, there's no question how much she enjoys it, or how quickly another one is about to pop into her mouth.

A Great Day.

1. Stacked 11 blocks, without being prompted.

2. Said bye bye to Sally Hicks, without being prompted.

3. Did Head, Shoulders, Knees & Toes all the way through--without coaching.

4. "Look at that fan. And look at that other fan! Those are pretty fans."

5. "Want to play with Emma. Emma, are you done eating?"

6. Continually reminds me that I am so lucky to have her.

Daniel Tammet, or, The Savant Myth

My book club just read Born on a Blue Day by Daniel Tammet. The discussion was excellent (as usual) but it started me thinking about the myth of the savant. Not every kid with an ASD has the meteoric intelligence of a savant, but I've found that people are curious whether or not that's true. "Does she show any particular talent?" is a question I've been asked, even by professionals during the interview process. I want to say, she has a TON of talents! She can sing all the words to Me and Julio Down By the Schoolyard, she could count to fifty at age two, she knows that taffy is a kind of candy and that Jose Feliciano is from Puerto Rico (trust me, she knows). But any affinity? Any real focused, superlative gift? I don't know yet. She could be a Daniel Tammet, a Kim Peek. But that carries a weight of its own, and I'm unsure of whether I would want Ellie to be so stratospherically brilliant. It can be lonely enough for her right now. Put her on that level, and I wonder if even I could reach her.

http://www.optimnem.co.uk/blog/ Daniel Tammet's blog

http://www.wisconsinmedicalsociety.org/savant_syndrome/

A Good Week, or, Who Doesn't Love To Swing?

Things Ellie can do this week that she couldn't do before:

1. Feed herself with a spoon and not spill a drop.

2. Use "I want," "I need," "I'd like" to express herself.

3. Look people in the eye and say, "Bye bye. See you later. Thanks for coming."

4. Crayon in perfect circles, using good pressure and a pretty decent hand grip.

5. Sit down on the potty to do her thing (diaper on still, but we're getting there)....this really isn't an ASD thing, it's a three year old thing.

6. Finally get back to Turtle Park for some good morning swinging. It's been too long and she clearly missed it.

Why Blog It, or, Who Wants to Know?

It is very hard to be a parent in this position. There's not a lot that can be said when it's your child who finds herself in this position, and yet there's so much to explain. Is Ellie [insert uncomfortable, whispered word here]--retarded? No. Oh, no, no, no--far, far from it. Can she speak? Yes, and sing the whole soundtrack to The Sound of Music, among others. Does she meltdown in public? Really, it's more of a sit-in, sort of like the lunch counters in the South, or perhaps Gandhi swooning from hunger. And it's not anything any almost three year old doesn't also do--I've seen a kid manage to throw himself out of a cart at Target, and immediately said a hasty, grateful prayer that he didn't belong to me. Remember, not every "behavior" in a kid with challenges is a pathology. Can you go out in public with her? Why not? She doesn't have active leprosy. And the places we usually go are the places we usually go, so she knows people, we have a little thing that we do, and her expectations are clear. Will she go to school? Of course. What about friends? She has them, and she clearly is fond of them. Is she bonded to you? Does pushing through the stair gate and showing up in the bathroom when I'm in taking a shower count? How about crawling in bed with me and rubbing my face until I wake up? Or any of the milieu of gestures, actions, and behaviors she exhibits for her daddy, her sisters, even her kitty...emotional connectedness is definitely not an issue.

So why is she on the spectrum? Because her fine motor skills and expressive language skills are significantly behind those of other children her age. She has a very difficult time expressing her own needs in words of her choosing and in a way that makes those needs clear. She only started using the personal pronoun "I" this week, and that_was_HUGE in our book. Not to mention she paired it with an action word of importance--I want, I need, I'd like. All of a sudden, we have real, essential communication. Let's not even get started on what she can do with crayons--thank you, Danielle, our wonderful OT.

I guess my point in blogging is not to make big pronouncements about autism. I'm not that arrogant, and I don't feel I have to blame anyone or anything for this situation. I just know what we're dealing with. Maybe later, when we're less hunkered down, I can think broadly about it. But doing that now would cloud my focus, which needs to be 100% on getting this terrific little kid ready for the world. And the world ready for her.

You get what you get, please pull around.

The Taco Bell on Mayfield Road in South Euclid is absolutely notorious for lousy customer service. The food is exactly what you expect at the Bell--seven ingredients mashed together in a plan-o-gram way. But the service, well, now, that's what's wholly unexpected and always a treat. Sometimes your order is right. Sometimes they forget one little thing--with me, they always forget to 86 the tomatoes. Sometimes the essential-ness of the order is ok, but they screw up the details--subsitute hard tacos when you ordered soft. And sometimes, you get someone's order who may have gone through the drive through 10 minutes ago. You can never tell.

The kicker, tho, is that regardless of what you order, the cashier's attitude is always the same--that whatever comes out is yours. Don't bother trying to send it back, or fix the problem, or complain to the manager. They are not interested in what you have to say about what you wanted versus what you got. We had a joke about this for a long time--"You get what you get. $9.39. Please pull around."

For whatever reason, we think that when we become parents, that truism fails. You think, in your post-bringing home baby empowered glow, that you can control everything about your kid's future, from likes to dislikes to idiosyncrasies, because you got him this far, right? My child will love chocolate, and pickles, and will secretly favor the Rolling Stones ca. 1968 over the Beatles, same vintage. My child will be able to sing, appreciate the fact that staying up 20 straight hours with a crying baby is very hard work and thank you Mom for going the distance, and will always volunteer to help bring groceries in from the car.

I still think some of those things about my children, especially my oldest. However, she managed to throw a little wrench in my plans for her. And no, there's defiitely no complaining to the manager this time.

Ellie has autism.

$9.39.