My expected behaviors

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/

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

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.

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

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.

No eyes averted

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

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.

Play with me

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

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.

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

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......

a-ha

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

Picnic Lunch

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

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.

Everyone likes a dance party

...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?

Cheese.

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.

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?

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.