9.39 new videos to come

2012-01-26T14:00:00.000-05:00

I have been making some videos lately to illustrate Ellie's progress with speech and spontaneity and it's my goal to load them this weekend. Cross your fingers.

My expected behaviors

2011-07-06T20:47:00.000-04:00

EXPECTED BEHAVIORS AT CAMP FOR ELENORE

1. Use kind words to friends and adults.

2. Speak in a level 1 voice to friends and adults.

3. If an activity makes me anxious or upset, use kind words to ask an adult for help.

4. Stay with the group.

5. Do the activity the group is doing.

UNEXPECTED BEHAVIORS AT CAMP FOR ELENORE

1. YELLING at friends and adults is unexpected.

2. RUNNING AWAY from friends and adults is unexpected.

3. LYING DOWN during group activities is unexpected

4. NOT LOOKING AT THE SPEAKER is unexpected.

We have been exposed to Michelle Garcia Winner's program, Social Thinking, because Ellie's interventionist uses it solo and in tandem with the SLP. I used it to model this prompt for Ellie at camp. A completely worthwhile exploration into how our kids think and how to get them to engage with the world in appropriate and functional ways. http://www.socialthinking.com/

Cheez it pleez

2011-06-24T19:01:00.000-04:00

I don't know what it is about Ellie and carbohydrates. I can't believe the hype that all kids with spectrum disorders like brown and crunchy (although that kid hasn't met a cracker she didn't love). I think that it's a predictable texture, and this girl is all about predictability and routine. I read the same book--Click Clack Moo--to her for a year and a half at afternoon nap time (before a bad spring forward ruined afternoon nap forever and she would only nap with me, in my bed, every day, which led to...problems). She only likes dresses with pants. She only drinks water. She only plays Hogs and Kisses on Angry Birds, not any of the other varieties, although she is interested now in the monkeys in Rio. She already has mastered my move, which is to control, control, control in order to alleviate anxiety. Unfortunately, it took me almost 40 years to realize that the control is a facade, the anxiety will still bubble over, and the results can be difficult to bear. I want to teach Ellie better tools than I was taught (none). I want to show her that life isn't a thing to be managed; it's an adventure to live. You just gotta remember to pack your crackers.

six is the new six.

2011-05-25T20:51:00.002-04:00

Ellie had a birthday this week, and while I don't have a lot of time now to write about the progress she has made in the last year, I will note that after six years, I am finally ready to say that she is toilet trained.

Whew.

Sense of self.

2010-10-05T22:14:00.000-04:00

One refrain I hear too often from parents whose children are newly diagnosed is that they aren't sure now who their children are. They move around their child like he or she is a stranger in the home. I am never certain if it's the power of the diagnosis that somehow interferes with a parent's viewpoint, or if somehow now the child is being perceived as sickly or different or Other. I know that when Ellie was first diagnosed I kept thinking, how did I not see this? why wasn't I more intuitive? The brain tricks us, makes us see the atypical as mere eccentricity, the stereotypical as quirky. We can't muster the idea that atypical is, in fact, atypical. I also wonder if acknowledging the atypical in our children is too close to forcing us to acknowledge the atypical in ourselves. I have caught myself numerous times being overwhelmed with auditory input and, in trying to quell the din of house, three children, and yowling cat marched into the living room to snap off Kai Lan with a brusque,"I can't listen to that anymore." In those moments I know that that overstimulation is what Ellie deals with all the time. I can't even imagine how the world must seem to her. How does she cope? How has she learned to manage it when no one can truly understand her highly peculiar and particularized needs?

Yet for all this, I see her in very clear moments, hers and mine, and I am so content. This is the child I longed for. This is the child I dreamed of. What came with her was unexpected at best. But she is no stranger. She is her, and yet she is me. We share that perfect tether of mother and child. She'll show me who she will be in her own time. Right now, she is just my fulfilled wish. Wonderful.

Don't cure me....cuz I'm not sick

2010-08-11T23:46:00.001-04:00

The biggest issue I have with organizations like Autism Speaks is their persistent push for a "cure." If autism were like measles, or beriberi, or AIDS, I'd say, heck yeah, let's find a cure. Because those diseases kill people. But autism isn't a disease. It's a disorder, it's problematic, it's an interference and it's devastating in its own way...but it's not a disease, like pregnancy is not a disease, like being black is not a disease, or gay, or short. It's a status, it's an immutable, but it won't slice your life expectancy in half. Herein lies the rub; I think that the well-meaning, well-connected, but ill-read people at AS think that if we just...I don't know, do what? Tweak a gene? Electroshock a brain? Inject a protein?...that the autism will all but disappear. Isn't that what we all want? For it to go away? I do not. I posit that the differences in children with autism are so valuable, so fundamentally necessary to how society regards itself as masses of cognitive entities, that eliminating the autistic is a disservice to us all. We need to see that difference is important. Variance has value. I don't want autism to be erased from my child if it means that she is no longer the child I know and love. I think a better use of resources is for therapy to bring those children who are so impaired as to be unable to manage their lives independently into the fray of functional, the realm of workable, the world of welcome. We need to alter our view of what it means to be essential to the larger culture. It isn't being perfect, intact, "normal." It's offering counterpoint, demonstrating tolerance, and offering appreciation for those who do not move through life in lockstep with the rest of us. My kid's not broke. Don't ask me to fix her.

People will think it. And some will say it.

2010-08-07T23:01:00.000-04:00

I took the kids to Target the other day to buy party hats for my birthday. (I was 39 on Friday. No, there was no party. They just wanted party hats. We all wore them.) I took all of them to the bathroom before we headed over to Purvis Park. Ellie quickly realized that the acoustics in the loo were conducive to making her often-incessant vocalizing really loud, really vibrato and much more interesting than usual. She moved in her frenetic way, back and forth in front of the sinks, singing her proprietary song, really working the acoustics of the tile. A woman came in. She observed all my kids in various stages of handwash, dress-fix, toilet flush, and then her eyes rested on Ellie.
"What is that about?" she asked.
"What is what?" (I had Helen half out of a stall, pulling her dress out of her underwear, while Emma wailed that she couldn't reach the sink by herself).
"What is she doing?" She pointed a painted finger at Ellie. Now that I really looked at this woman, she was neither young nor old, but she definitely had a way around her eyes that I didn't like. I recognized it later as judgment.
"She is vocalizing." I patted Emma's hands dry.
"But what is it? I've never seen a child do this before."
"She has a spectrum disorder. This type of behavior is very common."
Her eyes grew wide, wide. "She does this all the time?"
"A lot. Yes."
Pause. "And you allow this?"
I've had hot flashes recently. They are generally horrible and wipe me out for hours after. I got very, very hot in that bathroom. A hot flash it wasn't.
"There is no allowing or not allowing. This is what her brain is telling her to do. It's neurological." I tried to get the twins to move closer to the door to cue Ellie that yes, we are leaving. Right. Now.
"Well, I'm not sure that bringing her out is the best idea. I mean, this is very disturbing." Now the woman's lips are pursed, and her hands are more stiff, and I feel the big eye of disapproval making its way to me.
I have no idea what possessed me. None. I have no idea how the filter from my brain to my mouth just chose that moment to open. But it did. And in one fell swoop, I said, "Well, I am certainly sure of one thing, lady. You're an asshole." And I grabbed Ellie's arm and shooshed my kids out the door, bags in tow.
I am mad at myself for a couple reasons. I used bad language in front of my kids, which is not the model I should show and I feel terrible about it. I could have used the opportunity to teach this woman something about spectrum disorders, but just couldn't. In that closed moment, when all I sensed was an attack on my child, I could hardly focus on the didactic. And now she's going to go to bridge or Red Hats or whatever she does and say, well, whatever is wrong with those kids, it's all the mother's fault. I can't help it now.
But she was an asshole. And pretending that I didn't say it isn't going to make it any less true. So shame on me for swearing, but double shame on her for judging. I think I know which is worse.

the 3 year toilet training study

2010-08-02T20:55:00.000-04:00

We started putting Ellie on the toilet when she was about 30 months old. I know people who have trained 19, 20 month old toddlers,but Ellie never showed an interest, and with two other kids in diapers, changing one more kid wasn't that big of a deal. But then she was three, and nothing. She had already been diagnosed with PDD-NOS by this time, and the developmental pediatrician and all the literature said toilet training was a difficult skill for kids to learn. I didn't push it. She didn't need to be trained for school, since her IEP would cover her in diapers, and the preschool is licensed to manage toileting needs. And then she was four. And nothing. And meanwhile, all my friends' kids were completely self-sufficient, in underwear, able to travel. And Ellie still needed complete care....not to mention her anxiety about the toilet. She was so terrified. So absolutely unable to care for herself and terrified to try. We tried therapy with Dr. Cunningham...but her method, while helpful for some kids, did nothing for Ellie. We spent 10 weeks last summer doing her program, and nothing. (Helen got potty trained, so that was something in the big picture). And then we were staring down five, and kindergarten, and the fact that there was no physiological reason for her not to be trained. It was all anxiety, and "used to" habit, and her need to be cared for in that very personal, very tangible way by me.

The need for Ellie to manage her own toileting became a paramount importance. We consulted with Dr. Bardenstein in Cleveland Heights, who uses a play method therapy to inure resistent children to the idea of using the toilet. We worked with her for several months, weekly. Her program is slow steps, set to the child's pace. With Ellie, it was just getting her to hold toilet paper. Then a wipe. Then sit on the toilet. Then sit on the toilet longer. Then put her on the toilet regularly, and wait. And then, the diapers disappeared. And I tore up the carpet in the living room. And I went through 40 pairs of panties. And 5 boxes of Oxyclean. And 5 bottles of Mrs. Meyer's cleaner. And I cried. And she cried. And I got told time and again, "Ellie had an accident." And school was hard. And camp was hard. And I know she tries. And I sometimes can sweep it by, and not get upset, and say "it's okay, it's okay," and then sometimes it's all I can do not to beat my head against the sink while I clean her up, again, and sanitize the house, again, and wonder, will she ever do this? Will I ever not do it for her? Will I be able to take her anywhere without worrying, do I have wipes? Do I have extra panties? Do I need to always listen for that feral sound in her throat, watch for the rigidity, as she has no control over her body, as mistimes her reaction, and murmurs, in her flat voice, "I had an accident, an accident."

I really can't listen to breezy, pretty mothers spin tales of "struggling" to potty train their 24 month old typically developing children. I want to smack them and say, this isn't a struggle. This is just a child who isn't ready. My experience has been three years in the making. Three years. It took from me, and it took from Ellie. I have never felt more judged, more misunderstood, more alone, than in trying to accomplish this for Ellie, with her. A few stood by me, supported me, and they know who they are. And without them, I would not even be able to crystallize this experience in language. They saved me. And hopefully, through their love, I saved my child from a lifetime of dependence and disability. I hope I gave her confidence and esteem. That's all we can do for our children. That's all we can do for each other.

Choices had to be made

2010-07-31T22:01:00.000-04:00

I decided to discontinue writing to what had been my "main" blog because it simply ceased to serve a purpose for me anymore. My life has changed dramatically since I started blogging and I find that I have much more meaningful writing to do about parenting a child on the spectrum than merely blathering on about whatever else I have going on. So I hope to write far more in this forum and share more deeply what this parenting experience has meant for me, changed for me, changed in me. This is where I need to be right now. Hope you go along for the ride.

No eyes averted

2010-07-02T22:03:00.000-04:00

One thing that is so difficult for children on the spectrum to manage is eye contact. It is one of the first signs that a child may have an ASD...the constant aversion to making full and appropriate eye contact with another person, even a parent. There are many days where I don't get a lot of eye contact from Elenore, even if I ask her for it. I accept this because I think maybe the intensity of eye contact is just too much for her. Cameras are especially problematic because it is essentially one big eye bearing down on her demanding her attention. She just doesn't often know what to do with it. But lately, since camp started really, she has been approaching others with a very open face and a willing smile. Her social cues are much more functional than they ever have been. Here, she grabbed a silly set of 4th of July deelyboppers and stuck them right on her darling brunette head. I had to get it on camera...and she rested her hand comfortably on the counter and said, "oh, smile!"

I think the result is perfection.

Our Mall Meltdown, or, The One Where I Tell Smockity Frocks Where to Go

2010-03-27T12:55:00.004-04:00

Before I address the completely understandable furor surrounding the now-infamous (thanks in large part to my friend Stork Doc) Smockity Frock's blog posting (see also www.squidalicious.com page for all the links, including the original now deleted post) I want to detail the now-infamous "Nordstrom Meltdown of 3/26," since it was as bad as it could possibly get, and we still survived. In short, all the girls needed shoes. That means they needed their feet measured, and Rachel Klein, aside from being a top-notch sales professional, is also highly sensitive to Ellie's sensory issues. She neither dilly dallies in measuring her nor puts her in a position to feel threatened or uncomfortable. The shoe adventure went fairly well, considering Lelli Kellies were involved, and any mother of a young girl child knows the spell those shoes put on our progeny. It's like freaking fairy magic.

Anyway, the second part of our mall adventure was to have a snack by the fountain outside the store. Ellie usually is good about staying in her seat while I procure food, but the fountain is just. so. desirable. There's water in it! It's cool to the touch! It's like a mirror! People throw things in it! It makes a sound! She literally could not stay away from the water, and I could not both stay in line at the Cafe to order and repeatedly stop my child from pitching forward into the fountain and drowning. After the fourth time I had to leave the line sans provisions I asked the woman behind me to hold my place because I had a special needs child who needed immediate attention. Her response was, "If you can't manage your children in public, you have no business bringing them anywhere." Mind you, the twins were plopped in the seats, chatting between themselves, not causing an ounce of disturbance (except for Emma telling Ellie to "get your dupa in your seat"). My only response to this woman was, "I take that's a no?" A decision had to be made. I could see the whole picture, quite Gestalten, and understood that my only option under the circumstances was to evacuate the troops. The water was going to be endlessly tempting, the risk of Ellie falling very real, and the combination of the two too stressful for me to manage.

Herein lies the crux of our story.

Anyone who has a child with an ASD knows that transitions are hard. We prep our kids for transitions between events, we use picture schedules, PECS cards, verbal cues. We build in time for in-between time, emotional change-ups, travel. We run like Italian trains under Mussolini...we're dictatorial about the timetables, but dammit if things don't get done. Throwing things in reverse without proper notice is disastrous. I know this. I've lived in Autismworld a long time. The rules are tattooed in my brain. Yet even armed with this knowledge, I made a choice to remove Ellie from the attractive nuisance on a dime.

It didn't go well.

She threw herself on the floor and crawled back to the fountain. She kicked. She rolled. She pushed me away. She almost smacked her head on the ceramic tile edging between the mall floor and the fountain precipice. She screamed. She ran away. She begged me to let her put her hands in the water. She used every muscle in her 40 pound body to get as far away from me as humanly possible. Meanwhile, her sisters observed this with their own emotional responses (crying, clinging to each other) and stuck to me like glue. In the bitter end, 15 minutes after it started, I potato-sacked a four year old who is fully half my height through the store with four coats, three balloons, two other kids, a purse and a bag full of shoe boxes in tow, desperate to get Ellie into a small enough space where I could guarantee her safety from herself. Were it not for a former colleague at the Big N, Marshae King, stepping in like the professional mother of 3 she is to help me, I would still be there, by myself, struggling, hyperventilating, wondering if someone was calling 696-KIDS on me while clucking about bad mothering.

This brings me to Smockity and what she doesn't get. Clearly she has a fetish about behavior and manners. Good for her. I live in a please and thank you world as well, and my kids know it. Anyone, anyone, who has spent any amount of time with my children, from family to my friends (including my childless friends, male and female) note that my girls are polite, funny, and generally perfectly behaved by most three and four year old standards. Do I get my fair share of sass and pushback from my typically developing three year olds who are trying to find their independent place in the world? I do, especially from Emma, and as one of my best friends noted, "You're going to have to break that one like a stallion." This is what we want three year olds to do, despite how frustrating and exasperating it is. They need to fight us. This is how children learn who and what they are as individuals.

But what happened at the mall was not sass. It was not Ellie wanting her way. It was the sudden, unexpected, and wholly jarring removal of a sensory experience that I know her brain was telling her she needed by me, her mother, the center of her world, the one who is supposed to make all sensory experiences right. I know what water does for her. I have seen her whole body cave from ASD rigidity into amorpous relaxation as I pulled her around a swimming pool while humming in her ear. And yesterday, when I weighed in the balance her safety versus her brain's need to decompress, I couldn't in the moment justify the risk. There is no way to explain that to my child, to her sisters, and there is certainly no way to announce it to every looky-loo who judged me yesterday--and there were many--as they observed an overwhelmed 5'1" redhead chasing a competely out of control kid around a store.

Smockity doesn't get this, obviously, and I think it's partially what Stork Doc and the others posit, which is essentially that Smockity is a self-righteous jerk. I also think it's because she has only parented children who are typically developing (and seems to have had no contact with children who aren't). Smockity doesn't have to go through the very complex and intense process of looking at an undesirable or unsafe behavior, deciding if it's related to the ASD in some kind of sensory way (sensory seeking, sensory avoiding) and, if it is, assessing whether the behavior can, in the moment, be shaped into a more desirable option (is redirection possible? how, and how quickly? if not, what's plan B?) all while evaluating what steps need to be taken immediately to avoid a repeat of the behavior in that context. These mental shenanigans often take place in two minutes or less, tens of dozens of times a week. It would be easy, as Smockity does, to dimiss the behavior as "spoiled," "indulged," and whatever other modifiers she chooses, and immediately set upon punishing it. But it wouldn't address the real underlying issue, and hence deny both parent and child an opportunity to learn how better to function in a world full of Smockities who are ready to judge and reject, ostracize and humiliate.

I for one want to live in a world that embraces, loves, and values. So does Ellie. So do her sisters. I hope you come with us.

Why the Wakefield retraction matters to me, even if people are still idiots

2010-02-08T10:57:00.002-05:00

So what I thought would never happen has happened....The Lancet formally retracted the Wakefield study. It did so citing a variety of methodological flaws in the paper, including issues surrounding the randomness of the subjects, ethical issues surrounding consent/assent, and poor data interpretation. Immediately the conspiracy machine cranked up, led in part by Jenny Mac and her band of nonthinkers, who allege that Dr. Wakefield's work is being suppressed by Big Pharma. There's really nothing to be said about Jenny anymore...she is a True Believer, and her science is her child. The rest of us, however, can sleep better at night knowing that somebody, somewhere, stood up and said, Enough. We have brains. Let's use them.

It's Party Time

2009-10-11T12:15:00.001-04:00

So the Walk Now for Autism Speaks event was on 10/10 and I have to say I did my fair share of fundraising. My total was $2710.10, or $700 over goal. How I did was was by basically using my Facebook page as a constant push for donations. I don't feel bad about it. When the math of autism breaks down, $2710.10 wouldn't even cover one child's one year of private services (speech, OT, music, play). So it's the least I could do.

We also used the day to take advantage of Nicole Tugeau's Kidsfest, complete with popcorn and live band. Ellie didn't socialize too much with kids she didn't know, but she did love the band. I think "My Sharona" is a new hit.

Play with me

2009-09-13T08:35:00.003-04:00

Ellie has taken to inviting Helen into her play world, which kids on the spectrum don't usually do. It doesn't come intuitively to them. I spent over a year in play therapy with her, and she still participates in a playgroup on Saturdays that works on both play skills and functional speech skills. Here the girls are doing the Flora-Fauna-Merryweather trifecta from Sleeping Beauty. Ellie has finally learned to use toy props to create pretend play, and she's good at it. I know her brain struggled with this skill, but boy, she sure mastered it. Go, go, fairy girl.

Paging Dr. Wingnut

2009-06-15T19:00:00.002-04:00

I went to the Milestones Autism Conference today (www.milestones.org). What a terrific event. I was able to enjoy Brenda Smith Myles's presentation and also my old buddy Dr. Wiznitzer's. Dr. Myles does a lot with social curriculum and social skills. I thought she was both funny and spot-on when it comes to stressing the functionality of our children's skills. Dr. W. did an engaging and thorough review of research methods in medicine, particularly as it relates to ASD's. His explanation of why the mercury in thermerosol cannot cause autism was nothing short of amazing in its simplicity.

I love conferences because I find them rejuvenating. Just when I think I am tired of living the ASD parents life I go to one of these events and get excited about learning again. I want to try new techniques with Ellie to help her with her social communication. I want to tell the world, science is good. Science is a gift to us from the Lord. Don't insult Him by embracing voodoo. It will never serve us well.

All done preschool for now.

2009-06-07T14:17:00.003-04:00

Ellie is finished with preschool for the year, and starts communication camp in a few weeks. Here are some snaps from her picnic and the last day of school. She got the award for "Most Cheerful." The twins will attend Gearity next year, and I'm sure they will be as transformed in their own way as the big one.

I don't know why I'm shocked

2009-05-21T23:31:00.004-04:00

I have to share with you a few things that people post on the Autism Speaks web forums. Really, I couldn't make this stuff up.

Let's take a look at this one. Mumps can only cause sterility, in males, if they catch the illness after puberty. So an easy way of preventing sterility from mumps is making sure that children have mumps when they are children, not when they are teenagers and adults. Does the vaccine prevent mumps in teenagers and adults? Judging by the large outbreaks of this illness in the last few years in the U.S. and the U.K., not it does not.Of course, even if a male someone does catch mumps as a teenager or adult, sterility is fairly unlikely. I'll give a virtual lollipop to each searcher who finds a properly documented case study of sterility following mumps. For example, Franklin Delano Roosevelt, had mumps as a teenager at Groton, along with lots of other fun stuff like whooping cough. And here is the trivia question of the day: how many children did he father?Gotta add that tetanus is NOT a communicable disease, so mass outbreaks, even in the absence of vaccination would be a very difficult achievement. No one ever got tetanus from a cough or a sneeze!

So this person believes that
1. We should allow children to get the mumps rather than the vaccine
2. Risking sterility as a result of the mumps is preferable to getting the vaccine, because this person believes the vaccine causes autism. We all know it doesn't, but go with me here.
3. Getting tetanus is also preferable than getting vaccinated for it. Obviously, this person needs a lesson or two in communicable diseases, as tetanus is obviously not transmitted through respiratory spray. But then again, I don't know if this person can spell spray, let alone respiratory.

Another one!

i just wanted to say, i read jennys other book the other day mother warriors, good book, i love how she writes her books, keeps ya interested. i didnt watch the videos al posted i dont think there was any purpose watching them in my eyes i know both sides the hating and the loving, but just wanted to say that i read her book, and saw where she wrote she didnt cure her son of autism she just recovered him which was glad she worded that in words as she told barbara on the view.

I'm sorry, was this English? I blanked there for a minute. Another round?

That is just the way some people are going to be. Argue about something they know nothing about. They keep spreading misinformation about vaccines, diseases. The ND crew will always have a nice little uneducated cult following based on fear mongering. In fact, biomed is grounded in science. If they don't want to help with all of their kids issues because of their close-mindedness, that is up to them and to the detriment of the kids. Sad really. You can tell they don't post to help anyone, just to try and argue about something they don't understand. So be it.

This is from the same woman who alleges that

Well I don't know about mumps but apparently with the measles, something like 90% of the cases were exposed from overseas by being in contact with people who were somehow. I mean think of how the swine flu has made it all over the place. It seems you are assuming that he was infected by an unvaccinated child but that may hardly be the cases at all. Some viruses mutate a lot like the flu but others don't mutate as readily. However if they did, that would make me question the efficacy of every vaccine altogether like I do the flu. Apparently according to a couple of sites, the mumps virus mutates very slowly. So of course at anytime a virus could mutate to wipe a bunch of folks out and a vaccine would do nothing. However, mumps is not one of those super deadly viruses as I have read, but there can be complications from it to watch for. Thats the spot we always find ourselves in. Heck, scientists could splice and make a new super virus and it could get out. You just never know. Make sure he is getting lots of vitamin c and fresh fruits and veggies and no sugary treats. Olive leaf extract is a natural antiviral in case you ever want to have something to help kick viruses. Also is colloidial silver.

Ever wonder why it's so hard to make real progress in scientific and medical (not BIOmedical) research? Because of people like this. People who loves them the voodoo. People who get their Ph.D.s in Googling and then purport to be experts in immunology, bacteriology, histology, virology, pediatrics.....everybody is in on the conspiracy. Everybody is being paid by Big Pharma. Heck, I've been accused of being a Big Pharma "plant"! Any doctor who gets a grant from any pharmaceutical company is automatically discredited. Anybody who doesn't get drink the Kool-Aid is "misinformed."

And one more closing whopper from the aforementioned expert on measles:

M- you can't start off by saying it is not viral related and move to that there may be a small chance. Science is not my God nor do I follow that things have to be done the way some man made up. It is good to listen to those who may no better, but they may not always be right and I pray to my God for guidance. THat is why I have chosen this way.

And the Darwin Award goes to......

I'm so happy I could spit.

2009-05-17T20:24:00.001-04:00

http://www.jennymccarthybodycount.com/Jenny_McCarthy_Body_Count/Home.html

a-ha

2009-05-17T20:13:00.001-04:00

http://www.timesonline.co.uk/tol/life_and_style/health/article5683671.ece

Picnic Lunch

2009-05-17T13:35:00.002-04:00

This is how I envision the girls as old women...sitting around, having picnic lunch, gossiping. Only in my fantasy Ellie is as much of a participant as the other two. With speech going as well as it is for her, that may become her reality soon enough.

Rates

2009-04-27T20:40:00.003-04:00

We just got Ellie's developmental eval in from Case's Project BRIDGE. She has made enormous gains in some areas in the last year. These include two big areas of social-emotional development, relational behavior and self-awareness. Her rate of development increased by 69% in the first area and 67% in the second. This means that she developed in those areas that much faster because of the intervention (there is a statistical way to explain this that I can only do in my head, but probably not well in print). I am thrilled. She also showed noticeable improvement in discrimination behaviors (cognitively, not culturally) and object use. I can't emphasize enough how much this therapy works, and what a difference it has made for a kid like Ellie. I wish everyone had a Dr. Wiggers, a Miss Carolyn and a Miss Sung Hee. Bless you girls.

Composition

2009-04-19T23:49:00.003-04:00

Ellie likes to compose music now spontaneously. I think it's a way for her to use language in a way that means something to her and means something to someone else. When I get Blogger to finally upload a movie, I'll post it.

Lee-Silsby, Part 2

2009-04-06T23:23:00.001-04:00

I called Lee Silsby pharmacy this morning to get the scoop. I wanted to hear what the guy had to say. Here is the conversation. I used my cell to record my responses. His are to the best of my recollection:

[pharmacist gets on the phone]This is the pharmacist.
[ME] Hi, I came across your info online and I was calling to find out about your autism treatments.
[P] Do you have a child with autism?
[ME] I have a child with PDD.
[P] well, we have many options for you. I would suggest you start at the website www.autism.com for more information about biomedical autism treatments.
[ME] sure. well, I just want to know what you offer.
[P] well, kids with ASDs have mineral and vitamin deficiencies.
[ME] do they?
[P] yes.
[ME] how do you know?
[P] what?
[ME] how do you know that every child on the spectrum has this?
[P] well, the biomedical research shows it. it comes from their blood draws.
[ME] I guess I don't understand, if autism is neurological, what a blood draw is doing in the mix.[P] well, are you seeing a pediatrician?
[ME] of course.
[P] most pediatricians are not going to go the biomedical route. they won't offer you the type of testing biomedical physicans offer. they tell you it's neurological because that's what the AAP tells them. we work with several biomed doctors who have had amazing results using both our treatments and then other treatments they have designed.
[ME] but these guys, they aren't at UH.
[P] no.
[ME] they don't practice in a hospital.
[P] biomedical isn't part of the mainstream medical community. did you see Larry King the other night? there was a doctor from UH on with Jenny McCarthy, I've met with him at conferences and he is interested in what we're doing but won't commit to research on it.
[ME] Max Wiznitzer, yeah. I know him.
[P] you do?
[ME] he's my daughter's neurologist. and I have to say, I don't think Max is all that interested in what you're doing. maybe he was just being polite.

[silence here]

[ME] so you offer vitamin supplements, it looks like, and topical treatments.
[P] yes, the vitamin supplements help kid with ASD replenish what they are missing, and the topical treatments help detoxify their systems.
[ME] and this detoxifying, this will help with the flapping?
[P] I'm sorry?
[ME] welll, a lot of kids flap, you know....they have a lot of gross motor things going on...and usually it's some kind of behavioral modification that teaches them to self-monitor their bodies...I am wondering what this detoxification does for the flapping.
[P] look, if you just go to the website I mentioned, you'll get all the info you need about how our supplements cure some of these symptoms.
[ME] cure them?
[P] I have had patients all over the world be cured of many of their symptoms through our products. We also offer vitamin B12 shots, dietary programs...
[ME] people are just giving their kids shots?
[P] oh yes.
[ME] do their tell their doctors they are doing this?
[P] sometimes not, no.
[ME] and you're ok with that?

[silence here]

[ME] I am just still not getting how your stuff works and how you are getting reimbursed by insurance companies for it, when I can't get mine to pay for $3000 in outstanding OT bills we have from the Cleveland Clinic, which was prescribed by a doctor. How is your stuff getting covered and it just seems like kitchen brew?
[P] I don't have half an hour to explain this all to you.
[ME] but you are willing to sell me god knows what to rub on my kid and leech stuff out of her body?
[P] I am not sure what you want me to tell you.
[ME] well, here's what I'm going to tell you. I am boycotting your pharmacy because I think what you are doing is ethically wrong. You are selling stuff to desperate parents because they think their kid is broke and you can fix them.
[P] We have research from thousands of parents...
[ME] the plural of anecdote is not data.

[here's where I hung up.]

Boycott Lee-Silsby Compounding Pharmacy

2009-04-06T23:22:00.001-04:00

The Lee-Silsby Compounding Pharmacy in Cleveland Heights is making so-called "compounded medicines for autism." The claim (in testimonials, because there is no refereed, IRB controlled research) is that these drugs magically (presumably with sparkles and fairies and rainbow colored unicorns) take away all of the symptoms of ASD. They also sponsor a website, Age of Autism, which is anti-vaccine, anti-medical, pro-Jenny McCarthy (I cannot believe I actually have to type that). Chelation is one of the so-called treatments that Lee-Silsby supports (a treatment to remove heavy metals from the body, a treatment which has been discredited scientifically and which is dangerous to children). Parents are cooking up treatments for their child's autism and administering them with little to no medical supervision. In my opinion, this is tantamount to child abuse. It's funny that these clowns rail against Big Pharma and all the money that they allegedly make on vaccines and traditional psychopharmacological treatments for ASD related conditions, but who is asking Lee-Silsby how much they are making on their baking soda-toothpaste-hocus pocus--voodoo mess that they are selling to desperate parents? You bet your sweet bippee I am.In the meantime, I realize that it is important to support Cleveland Heights businesses. However, as a parent of a child with an ASD, I cannot support a business that promotes medical quackery and sells it as science. You make your own decision.

Oh no, not again.

2009-04-04T20:37:00.002-04:00

http://www.cnn.com/video/#/video/us/2009/04/04/lkl.jim.jenny.autism.pt1.cnn

This is worth it just to see Max Wiznitzer, who in my opinion could slam dunk Jenny McCarthy into cold storage blindfolded.

Everyone likes a dance party

2009-03-01T10:51:00.003-05:00

...especially when it involves cupcakes and the old school Sesame Street playhouse, which nobody else has, because it's from 1973.

I often have to create space for Ellie to have social interactions with other children and little dance parties are the way to do it. She often deals with these friends on her own terms--making up little chase games, some parallel play (but she'll gladly accept play extensions now, even if it includes another child)....I don't expect any of my friends' kids to be Ellie's "best friend." That may not be possible for either of them. I would like them to accept her for who she is and respond with to her with sensitivity. The only way I can see that happening is activities likes this one, where the kids can snack, we'll blow bubbles for them (in the house!) and we can jam to some fun music. Ellie said repeatedly yesterday that she had fun. Who's to say she didn't? And that these experiences are training her brain for future endeavors in an inevitably social world?

The Second Gunman, NASA's Moon Soundstage, and Anna Nicole Smith was a Star

2009-02-14T19:57:00.007-05:00

The special masters came back with a ruling yesterday that clearly states what a lot of us believe: vaccines don't cause autism. And still, the insanity that somehow, everyone involved in science is wrong and desperate parents who desperately want to believe that there is a connection are right continues today.

This morning I received a digest from a Yahoo! group I joined, National Autism Association-NE Ohio. Almost every posting in the digest was about "biomedical" treatments (bizarre diets, detoxifying your kid, super expensive conferences on wacky combinations of the two previously mentioned issues, the special masters' finding). I have to say, I just got totally pissed. Really. Those of us living with a child on the spectrum do not have the time to fool around with waste of time "treatments." So I fired off this letter to the posting administrator:

I believe I am confused about the mission of Autism Northeast Ohio. I thought it was an organization for promoting therapeutic information, scientific and pediatric care and options, and support for families. Instead I opened up today’s digest and saw that the first couple posts contain what amounts to a continuing and inexplicable dialogue about the so-called vaccine connection and an entire (expensive) conference on voodoo diets.

The question about autism and vaccines has, I believe, been settled. I know people want to believe there is a connection. There are also people who want to believe there are aliens living among us, that there was a second gunman on the grassy knoll, and that Anna Nicole Smith was a “star.”

We don’t walk around saying that going to college causes mental illness, even though the typical schizophrenia patient develops signs of the disease between the ages of 18 and 25, the time frame when a lot of kids go off to university. That’s just silly. Yet some insist on promoting this same fake relationship between childhood vaccines and autism. It is a waste of time and resources, both of which are extremely limited.

I would like to see more information about real therapy (music, speech, OT, play), more information about working with ASD children in their classrooms and communities, the ins and outs of the IEP process, more information about sibling relationships and the wellness of the whole family. In short, stuff that is based on vetted, refereed science and research. My daughter deserves to be supported with fact and truth, not suspicion and coincidence.

I would say that my email went over like the proverbial toot in church, because I got this back. I have inserted my own responses in bold. No, I didn't send these responses to the writer, because what is the point? She has an agenda and she really, really believes in it. But I want you to see what people like me are up against when it comes to defending science against, for lack of a better word, crap.

If you go to our website at www.autismnortheastohio.org, you will be able to read our mission, who we are and what we do. We do NOT endorse any of the varied therapeutic interventions for autism but support informing the population about them. We support and fund a variety of them, based on what the family that applies for support wants. We are not a clearinghouse of therapies. Therefore we will post information about a variety of therapies.

We applied for a grant to help with Ellie's music therapy. Probably won't get it now.

If you noticed, yesterday ot the day before I also posted info about upcoming workshops that we organize. The topics are varied from taxes to neurofeedback, special ed law, and biomedical testing. If I come across other resources such as workshops or articles about something relevant to autism, I post it too. And while NAA-NEO does some of the resource and article posting, we are also in the process of fundraising for families like yours, which is our main goal.

I'm not sure it is their main goal...I think their main goal is to push neurofeedback and biomedical. I have seen very little about special ed law lately, although they are trying to schedule an IEP resource meeting with Judith Saltzman, who practices SpEd law here in town. The bulk of the workshops are about gluten free casien free diet and immune system malfunction due to (you guessed it) vaccines. In short, voodoo.

Therefore I can only provide resources to the mailing list if I have the time or if I happen to see it someplace else and repost it. I we are unable to provide a balanced, scientific newsletter filled with the info you requested on a regular basis. I recommend that you join other groups for this type of resources on Yahoo or elsewhere, just go a search for autism, aba, autism and education, etc. as we do not specialize in any of these particular areas.

Is she admitting that their newsletter is unbalanced and unscientific?

I posted about the vaccines issue b/c I thought it was relevant because 2 cases were yesterday defeated in vaccine court, which is an establishment by government, deciding about the safety of vaccines for all, with overwhelming conflicts of interest. I personally think that is disturbing. One case in 2008, btw, won in vaccine court, which proved that that are some cases in which a predisposition (in that case mitochondrial dysfunction) could be a risk factor and once vaccinated, the child could become autistic (the Hanna Poling case). There is no one size fit all medicine or education for the the general population, but especially not for our kids.

Information about the Poling case is linked below. The ruling in that case is very narrow and probably will never be used as precedent in future cases. I do not think the special masters have a conflict of interest at all--they are looking at real science in this area as it relates to toxic torts and pharmaceutical malfeasance and they come to the legal conclusion that there is no proximate cause of injury and therefore no awardable damages. That's first year Torts at law school. Pirate lawyer friends, feel free to help me out here.

Last, please don't be disturbed by biomedical emails. If you don't want to read them, delete them. For many, many folks, biomedical brought better health, and in some cases significant improvement in autistic symtoms. Many parents want this information from us.
I am not to take sides here, NAA-NEO is not. We are supporting it all. But if this is too much for you to deal with, let me know and I will take you off the list.

I am not disturbed by them. I am angry that resources are being wasted on talking about an issue that is not an issue. The plural of anecdote is not data. Stories are not science.

Here's what I will say one more time about vaccines: they save lives. My husband, the intrepid geneologist, is helping out the LDS church by indexing their geneological records online. So many death recores he indexes from the late teens and early twenties are full of children's names, children who died from rubella, typhoid, meningitis, the flu, whooping cough--diseases we can prevent. Diseases we never have to see again, if everyone would stop panicking and just get the damn shot.

My kid may have special learning and developmental needs, but at least she won't die from the measles.

http://news.yahoo.com/s/ap/20090212/ap_on_go_ot/autism_ruling

http://content.nejm.org/cgi/content/full/358/20/2089

http://www.nytimes.com/2009/01/13/health/13auti.html?_r=1

http://www.newsweek.com/id/165644/page/1

http://blogs.discovermagazine.com/badastronomy/2009/01/17/alison-singer-autism-hero/

http://blogs.discovermagazine.com/badastronomy/2008/08/22/antivaxxers-must-be-stopped-now/

Cheese.

2009-02-12T00:02:00.003-05:00

Here's an amazing update on what Miss Thing here can do that she absolutely could not do before.

1. Drink from a straw. Why is this a big deal? It's a fine motor skill, believe it or not, on par with being able to drink from an open cup, or blow bubbles, or air through a recorder. All of these things Ellie has mastered in the last 6 weeks. Her brain is on overdrive in this area. Thank you, Goddess Danielle of OT.

2. New phrases that pay:

Mom, will you play with me? (Yes. Anytime, anywhere).
Looks like Emma is upset. (Ellie was able to recognize the expression on another child's face and interpret it. Very difficult for kids on the spectrum. Some Asperger kids never do it. It's not intuitve for them. This also makes teaching empathy hard...we just need to model, model, model.)
I would not like to try carrots. (Okay then.)
Helen, will you play microphone with me? (Inviting another child to play in her space is not an Ellie thing. Interacting with other kids is hard work. But Helen got the nod, even above precious little baby sister Emma.)
I would like more cold water in my big girl cup. (You got it).

3. Ellie now can be gently redirected to another adult besides me for assistance. Before, if I couldn't help her with a task, it was throw herself on the floor, cry, run around. Now it's, Daddy, again please Gabba. No tears, no upset. Love it.

4. She knows, as in the photo above, that a smile is requested for a picture. She's really trying. She plays Funny Faces in the mirror and tries to see how her face looks in different positions. Again, not intuitive, but so, so valuable socially.

5. SHE HANGS AROUND THE KITCHEN AND BUGS ME TO ACKNOWLEDGE HER. You have no idea how great it is to have your child want you to come into her world when she hasn't done it for almost four years. I can't always drop everything but I sure wish I could. She is trying to carry on conversation--back and forth, turn taking, you go and then I go. The effort she is making is amazing.

What works? Therapy. Therapy. Lots of it. Hard work. Cutting out people who aren't supportive. Really knowing your child. It's all for this. These moments I have waited for all my life.

Look at me.

2009-01-22T21:11:00.002-05:00

This is the kind of look we're getting all the time now. The focused, look at me, I'm really looking at you look. Here Ellie is doing something she loves--music--but she's also getting into that place where if no one witnesses it, did it happen? Emma is there now too--Bill must acknowledge every facet of Emma's day in order for it to have validation for her. Helen...well, she's just happy to be here.

I love this look. I love that Ellie can finally do it. I love that she does it for me.

What the what?

2009-01-10T17:50:00.002-05:00

So I've got the flu and have been coughing up half my lungs for the past two days. Ellie is very concerned about my condition and comes to hug me whenever I have a coughing spell. Today, however, she was sitting at the dining room table eating grilled cheese and considering eating soup when I was on the couch languishing. Suddenly, I coughed_really_hard.

"What's wrong, Mommy?"

This is the first time that Ellie has been able to initiate a question, appropriately, about something she didn't actually witness (she only heard it, didn't see it, and she's really more of a visual learner). She doesn't do abstract. But she asked, so plainly, so definitely, that I cried. After I answered her, of course.

Bouncing and the elusive cup

2009-01-01T20:21:00.002-05:00

American Bouncers did a special program for the National Autism Association - Northeast Ohio (NAA-NEO). If you had a special needs child, you could do bouncing (on the BIG bouncers) with similarly situated children and their families during Christmas break. Well. It was terrific! There were all different kinds of kids there (meaning kids whose needs were unique, from language to social skills to physical prowess) and from what I saw everyone had fun on their own terms. Our kids went wild for the bouncing....Ellie even taught herself to climb the "rock wall" bouncer and go down the 10 foot slide on the other side. They offered a nice snack room with the Wiggles on the big screen and no pressure for perfect behavior. However, I sure got it! My girls were right on target with listening and sharing. It was a joy to see them having so much fun.

www.americanbouncers.net

That being said, today Ellie drank from an open cup for really the first time. She has resisted the cup because (we think) she doesn't like the surprise sensation of cold water on her if she spills. However, today she was very confident and let Bill help her. No pics, of course. Emma applauded. This was success.

Showtime, or, Sometimes we just need our moms

2008-12-22T20:47:00.002-05:00

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

2008-12-12T20:33:00.003-05:00

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

2008-10-26T19:37:00.002-04:00

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

2008-10-20T07:33:00.003-04:00

"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

2008-10-18T20:08:00.004-04:00

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

2008-10-18T20:02:00.000-04:00

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

Business card idea

2008-10-06T21:45:00.002-04:00

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!

2008-08-26T22:10:00.003-04:00

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?

Have you seen this?

2008-08-01T23:11:00.000-04:00

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

You should.

Unfortunately, not unusual.

2008-07-21T20:18:00.002-04:00

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

2008-07-20T21:28:00.004-04:00

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

2008-07-16T22:08:00.004-04:00

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

2008-07-09T19:07:00.003-04:00

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

2008-06-29T20:46:00.003-04:00

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.

2008-06-10T21:46:00.002-04:00

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

2008-06-03T20:22:00.002-04:00

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

2008-05-26T20:06:00.003-04:00

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.

2008-05-23T00:04:00.000-04:00

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

That big smile comes easier now.

2008-05-17T20:19:00.000-04:00

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.

2008-05-11T15:33:00.000-04:00

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.

2008-05-05T20:59:00.000-04:00

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

Twist Tie

2008-05-04T20:34:00.000-04:00

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.

2008-04-27T08:07:00.000-04:00

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.

2008-04-21T19:59:00.000-04:00

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

2008-04-20T19:36:00.000-04:00

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?

2008-04-13T23:36:00.000-04:00

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?

2008-04-06T09:49:00.000-04:00

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.

2008-04-02T23:04:00.000-04:00

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.

9.39

new videos to come

My expected behaviors

Cheez it pleez

six is the new six.

Sense of self.

Don't cure me....cuz I'm not sick

People will think it. And some will say it.

the 3 year toilet training study

Choices had to be made

No eyes averted

Our Mall Meltdown, or, The One Where I Tell Smockity Frocks Where to Go

Why the Wakefield retraction matters to me, even if people are still idiots

It's Party Time

Play with me

Paging Dr. Wingnut

All done preschool for now.

I don't know why I'm shocked

I'm so happy I could spit.

a-ha

Picnic Lunch

Rates

Composition

Lee-Silsby, Part 2

Boycott Lee-Silsby Compounding Pharmacy

Oh no, not again.

Everyone likes a dance party

The Second Gunman, NASA's Moon Soundstage, and Anna Nicole Smith was a Star

Cheese.

Look at me.

What the what?

Bouncing and the elusive cup

Showtime, or, Sometimes we just need our moms

I am Special

The Changeling

Jenny McCarthy, or, You Knew This Was Coming

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

What Barack says about ASD's

Business card idea

Preschool!

See also Three Degrees Later....

Have you seen this?

Unfortunately, not unusual.

Yep, There's That Sea Cow

J Jump Joyful

Dr. Wiznitzer, or, Birds of a Feather

Having Friends

Look at this kid.

Face Playing

What I Did This Week, by Ellie

Then. Now.

That big smile comes easier now.

Let's go swimming with Dad.

I'm not surprised.

Twist Tie

Affect is Everything.

A Great Day.

Daniel Tammet, or, The Savant Myth

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

Why Blog It, or, Who Wants to Know?

You get what you get, please pull around.