Susan's Blog

Sunday, January 14, 2007

Smack That

We took Nat and Ben to the movies, to see A Night at the Museum. As soon as we sat down, as predicted, Nat started to say, “Take off coat, take off coat.” I said, “I am, I am!” And unbuttoned right away. Ned did not; he noticed that Nat did not have a straw for his soda and he stood up to quickly get one — wearing his coat.

As soon as he started down the steps Nat turned to me and smacked me in the head, hard. “Nat, stop!” I said quietly, and he hit me again. I jumped back and overturned his soda, onto my lap, my seat, and my shearling coat. Nat hit me again. I grabbed his hands, quietly saying, “Stop.” He said, “Yes. Coat off.” About Ned, who wasn’t even there. I was spitting nails, I was so furious. I sat there holding down Nat’s hands. I must be pretty strong, or else he was letting me do it.

Ned returned and I said through my clenched teeth, “Take off your Goddamned coat.” Ned said, “Sue, just a minute!” But then he did. I said, “He kept hitting me. The Sprite spilled all over my coat. Excuse me.” I got up and ran out to see what I could do. My whole right leg was wet and sticky. I shook the coat and drops of soda sprayed outwards. This better not be ruined, I thought. I also thought something else that I am not going to put into writing.

I called my friend Sheila, who has a kid on the spectrum, not quite as far “down” the spectrum as Nat. I have known Sheila for about fourteen years. We have been through it all: bolting, children getting lost, children getting taken out of the park, children being ostracized in the park, children being expelled from schools that claim they are helping special needs kids. or ALL children as my school system is into saying, children who try to beat up their mothers and fathers, children who break their siblings’ toys, children who smear, children who yell obscenities that they don’t understand. Sure, all kids do that stuff. But ours have done it a lot more.

Sheila laughed sympathetically, and said, “We’re going through it too, you know.” We talked for a little and she let me vent my rage, all the while I was shaking out and wiping my coat off. But I was afraid to leave Ned alone to deal with Nat, who might have gotten upset by my walking out. So I went back in.

The movie started up and I started to cry. And this was a comedy, too. Ned saw, of course, and said, “Nat, give Mommy a kiss.”

I thought, “Oh, Jeez, like that’s going to help.” Nat leaned over and kissed me gently.

Well, it helped a little, I guess.

Nat’s Tournament

Tabblo: Special Olympics B-Ball Tournament

There once was a sweet boy named Nat
Who was wired a bit like a cat
Yet he found, all in all
He played mean basketball
And his team’s 1 and 1 so that’s that!

Dear Natty, he really could shoot
Though his autism was rather acute
His teammates were skilled
Coach Jim drilled and drilled
To them Special O’s quite a hoot!

See my Tabblo>

Somehow, A Good Day

Yesterday was feeling great. We were all just home, hanging out. I got a call from my close friend R to go to the gym; we had not seen each other for over a week, which is unusual for us. So, a lot of laughs on the treadmill and then I moved to the Stairmaster, gasping laughs and intermittent talking. We did the hot tub, catching up on local politics and school issues, nearing hysterical laughing while the hot bubbly water churned around us. Is there anything better than a hot, charybdis-like soak (minus the deadly vortex mishegas) after a killer workout, with a friend who just has the best sense of humor? And as we were dressing, more laughing; I told her about an invention I have in mind — nothing important, folks, just silly and fun. R’s husband is a patent lawyer so she says I should talk to him. Maybe I’ll become so rich I could self-publish my crappy novels, create my own magazine (Fabulous over Forty: it would feature real women, not models, wearing fantastic clothes and with all kinds of articles about life over forty, but not in that stupid More Magazine/Hollywood/O way; there’d be disabled people, fat people, short people, but everyone would look their absolute best and would write something amazing), etc., etc., hire a house cleaner, start a school for autistic teens, blah, blah, where’s my meds.

Then, (back to my so far, so good day), Ned got Nat ready for his playdate! He was going to the movies with DJ, his first friend (this friendship started with Special Olympics gymnastics, when Nat was 15). DJ and Nat love the same movies and are about the same level expressively and behaviorally. DJ’s a bit more academically-inclined, but I feel that Nat is a bit more socially in tune with people. Enough with the autie-compare!!!! Point is, I love DJ because he is Nat’s friend and it is so great to see them together. Tommy, DJ’s “buddy,” (a student in his early twenties) took them to the 1 o’clock showing of Charlotte’s Web, only to find it was a 2 o’clock showing! But Tommy just winged it — brave soul — and took them to a book store!!!! Not exactly Nat’s favorite place, and needless to say, with that abrupt change of plans, everyone within a one-mile radius was in the Pinching Zone.

But nothing happened. Nat was able to shrug it off, knowing that he had to be calm if he wanted to stay with DJ and see the movie. That’s my Miniman!!!!!!!!! Does what he can.

How wonderfully different, on so many levels, for Nat to be the one out and about with a friend, and Max and Ben home without much to do except puppy around? I think we all felt a very sweet release to have things like that, just the four of us, but also knowing Nat was happy. A rare, blessed moment.

Friday, January 12, 2007

What’s On My Mind

It Never Ends

Today it’s Pinocchio
Tomorrow, Charlotte’s Web
But all in all I never know
What’s really in your head.

You have the loves of childhood
The body of a man
I love and hate the innocence —
My real-life Peter Pan

How to measure value?
What deems a life worth living?
Is it about what we all can view;
Or is it about what we’ve given?

Lately I wonder what it is
I’m put on earth to do
To make myself happy, find my bliss
Or make you a better you

Sometimes it feels
Like your stagnation
Closely matches mine
My mind just reels
At all the thinking
Sitting, spinning wheels
The days that stretch like worn gray rubber —
The horror of wasted time.

Another Brilliant Career

I am thinking that I could be an Autism Organizer, along the same lines as the old union organizers. This is something I’ve done in my own town, and something I’ve done with other causes. I’m good at taking an issue, tapping into the collective frustration in that group, and organizing the people involved into a group. Then I advise them as to how to hone their message and take it to the powers that be for change. We now have Brookline CARE in my town, which I co-founded, (Brookline Coalition for Authentic Reform in Education), primarily to fight the high-stakes use of our state exam, the MCAS. (I have written about the MCAS many times; it is the misnamed “Massachusetts Comprehensive Assessment System. It was originally supposed to be a “comprehensive assessment” instrument, meaning a system of multiple assessments. Now what that has come to mean is many, many standardized tests! Rather than looking at student work, teachers’ evals., portfolios, oral presentations…)

Because of Brookline CARE’s advocacy, the town of Brookline has been on record for several years as being opposed to high-stakes testing, and in favor of multiple assessments. Brookline has resisted changing its excellent curriculum to fit the state Board of Ed’s idea of Euro-centric, drill-and-kill education.

And recently, I have been an advisory part of the formation of COBAP, Coalition of Brookline Autism Parents. This group has a mission statement now and an organization and a yahoo group that is private. They will be meeting monthly with the Special Education superintendent in our town; we just did the other day and it was a very successful start. We have even managed to wrest some budgetary changes out of a very tight fiscal year; at least, that is the intent. The School Committee has to approve it, still.

I will also be part of forming a tax increase campaign in our town, when the time comes. I love organizing people and creating groups.

I have been on the School Committee, I’m a Town Meeting Member, and I have written for the local paper for years so I can advise on all of these aspects.

So why not put my energy where there is a real, aching need? As an Autism Organizer. As it is, I get questions from readers quite frequently about what to do in their town and I advise them accordingly. I don’t want to be an advocate for individual families so much, although I love to do that, too, but rather, for groups who need to get their school boards and superintendents to listen.

The whole problem is, how do I get to these families? How do I get paid?

But if you have a group of parents and you want to organize, I’m your point person. Spread the word!

Thursday, January 11, 2007

Five Things…

I was tagged by Bob to do Five Things You Did Not Know About Me, which I’ve done before, so I’ll have to try to be original (although that was Five Weird Things…).

1) My best friend from age 11 until age 18 and I have nothing to do with each other and have not spoken in years. Her choice, not mine. I still dream about her sometimes.

2) I had a heavy-duty crush on this friend’s older brother for that same amount of time and he was only four years older than me but never gave me the time of day. Yet his older brother, who was two years older than him, took me out once or twice.

3) I recently looked up the former crush on the Internet and contacted him via email. I sent him one of my best knockout photos. That felt far better than it should have.

4) I have written five novels: Two historical romances and three contemporaries, and I do not know what to do with them, if anything. I can’t seem to make myself read through them and improve them and then submit them. Anyone want to do it for me?

5) My first job was concession stand at a movie theatre. The manager was an idiot, who had a policy that if we were short at the end of the night, it would have to come from our paychecks! I was never short until one night, when this guy counted and recounted the money, getting different numbers every time, and he blamed me. I refused to let him take it from my paycheck and was fired. I walked past him into the theatre and watched the movie for free. It was “Love At First Bite.”

If A Blog Calls In a Forest

I might bring back the Comments. I say that nervously. I have felt so peaceful without them. But people tell me they miss them and I admit I feel a little too Zen-like this way, as in, if a blog calls in a forest and no one comments…

I will speak to my gurus about how to make it so that I can control the comments more. And, uncharacteristic of me, I will sit with that information and see how it feels. Thanks for your patience, if you have it. It’s a wild ride, this blogging world! (And just about anything else I do.)

My Many Hats



Magical Kimmie

My sister’s kids are very special. As with all children and me, it took me a while to really get who they are. Of course, that is because kids are just small people, and they are every bit as complex as grown-ups, but we (I) tend to forget that.

Laura’s little girl is kind of magical to me. She is the closest thing I will have to a daughter. But I think that even if she had been a boy I would have felt this way. She has a round head, creamy-dusky skin, messy curls, and something very familiar about her. Her eyes take it all in and think about it.

Kimmie was Benji’s first friend. Born just a few months after him, we put them together very early in life. Back then I was afraid that Benji was going to have some social deficits, because he seemed very focused on some things and not at all on others. Sometimes I could not get him to answer me. You know what I’m saying. I did not know who Benji was until more recently; I did not know that this is just Benji and there’s nothing to be afraid of.

But Benji showed very little interest in other kids, such as the children in his music class (he was 6 months old when he started music). The other kids seemed to enjoy each other more easily, but I remember Benji actually growled at them back then! So I did not get it.

With Kimmie, he always seemed relaxed and fascinated. Maybe he felt that she was like a sister, a part of him. Maybe it was her easy personality, her quiet thoughtfulness. Whatever it was, the two of them could just be together for hours. Even before they did more than parallel play, they could be in each other’s company and be happy. I had never seen anything like it with Benji and it gave me such hope. I knew that if he could have one fulfilling peer relationship in his life, he’d be just fine. And so he did.

Kimmie gave Benji the gift of first friend. We all remember our first friends. As they grew, they continued to share interests and be extremely comfortable with one another, like two parts of the same person. Funny thing is, sometimes Kimmie reminds me of me somehow, even though she looks like Laura, and Benji reminds me of Laura! Yet they rarely fight. They just sink into where they left off even though they see each other only a few times a year.

I adore my niece and nephew (whom I will talk about another time), both for who they are and for what they have given to me.

Wednesday, January 10, 2007

No-Impact Yoga

I am not a joiner. I don’t get into trends, I don’t like groups that much. I like to pick and choose whom I spend time with. But there are times when I feel like I’m missing something. Particularly when it comes to trends a lot of women go in for.

My friend Nancy Bea just did a blog post about the real importance of book discussion groups: it’s all about the socializing, the connections. I totally agree; but I have never been able to find one I enjoy being part of. I guess the closest I’ve come is my Writer’s Group, which is just three women, and we meet sporadically, as our schedules allow. One of us just had a third baby, so she’s a bit strung out; the other just got a second book contract and a column at the Globe Mag so she’s crazed. And I? My babies are growing up and my second book contract is merely brewing. The Globe doesn’t return my queries. D’oh, d’oh, d’oh! I am living in total suspension, waiting for people, just waiting for them to get back to me! Why am I always in this position? I should just get a normal job, rather than this roller coaster I’m on called a writing career.

Speaking of position, and of things I have not quite been able to get, I’d like to talk for a minute about yoga. For years I have been hearing about how great yoga is, how relaxing, how it is really strenuous, how it is great for meditative purposes, how it is a hot trend, etc., etc. I was not attracted to it in the least, because why would I want to spend an hour just stretching and breathing? You stretch to warm up for a real workout; you breathe to live! But — yoga clothes are cute, and I belong to this snazzy new gym, so I figured I’d give it a chance. On Sunday I went for my first class, with my friend Miriam. She gave me the choice of spinning at 9 a.m. or Kripalu yoga at 11:15. It was Sunday; enough said!

I got to the gym early and did some weights and stretches. Then I did about twenty minutes on the Stairmaster until I saw it was time. I rushed downstairs to the yoga studio. Inside, there were little sticky pastel mats spread out everywhere. I put my stuff on one that had no stuff near it, and a woman came over and said, “Uh, that’s my mat.” I walked away with a stupid expression on my face, having just given away the fact that I was the yoga newbie, and I went over to the shelves which housed mats, foam blocks, bolsters, belts, and Navajo blankets. Whoa. What kind of kinky stuff were we in for? I took the belt and went to the back in the sunny spot no one wanted.

My friend showed up late and lay down next to me. We were assuming the “corpse pose,” which is as you imagine it to be. The instructor was a lumpy woman in her sixties, who had a soft voice I could barely hear. She instructed us to relax every part of ourselves. She named part after part, and I found myself thinking, “But you missed my knee! And my thigh! And my chest!” And then, as I concentrated on relaxing, an oxymoron if you ask me, I found that I could not relax my arms. They were sticking out on the sticky mat and all I could think was, “RELAX, DAMN YOU! BEFORE SHE COMES BY AND SEES THAT YOU’RE NOT RELAXED!!!”

I must have tricked her. She jostled my feet a little; perhaps they were even more un-relaxed but I don’t know. Feets is feets. Anyway, then she told us to turn over on our sides and — rest! My friend whispered, “Now we have to rest!” And I laughed, which seemed all wrong for the mood. I thought, “Is she going to make me laugh for the whole class?” And I got all tense but also excited because it seemed like fun.

Then we had to stick our arms out, and suddenly my friend said, “Am I crowding you?” I said, “No, I’m fine!” And then she moved somewhere else! I thought that was funny, too. But it helped me concentrate on the class.

All through the class, whenever we had to stand, I found myself unable to hold the pose, not because it was strenuous, but because my feet were sweaty and slipping off the mat! By the end of the class, I ached just from trying not to slip around.

And that night, I had a terrible pain in my knee. Not my right knee, either; my LEFT knee!

I guess I can’t even do yoga right!

Ned said, “It’s too mellow for you. With belly dance, you get to be girlie and work out really hard. It’s perfect for you!” And there’s no sticky mats.

News Bites

News Announcements

A few things: Max has moved his blog to a new site. He loves getting blog traffic so check him out!

I hate Blogger, the software I use to make this blog. Yesterday it would not let me publish my blog until I had signed in with my “new Google account,” which I do not have! Blogger wanted me to move to their “beta” version, which is actually no longer in beta, and when I tried to do that, it would not take my blog because it said it was too big! Way to go, Blogger! Talk about chasing your own tail. The only way it all worked out is that Maxie fixed it for me somehow, (he knows the same magic as Ned) and so I made him a heaping plate of mashed potatoes, his favorite. Max or Ned will be working on moving me to WordPress soon.

My belly dance workshop last night was amazing. It was more of a discussion and try-things-out than a dance class. We played different music that we loved and we then figured out how we would choreograph each piece. I brought in the Misirlou, of course, and shared that vision with everyone. Others brought in Dr. John, or Shakira. It was very interesting belly dancing to all forms of music.

But the best part of the evening was the teacher’s attitude. She really treated us like dancers in our own right, rather than acolytes or newbies. It set me free to try things and to feel like a dancer among other dancers. Very empowering.

My bruise is no longer swollen but it has spread over the entire eye, classic “She’d rather fight than switch” black eye style! Looks kind of cool, but I have covered it with makeup so as not to scare or tempt people to fight with me. Although I must admit, I am one tough babe. I have a meeting with the new Superintendent of Student Services (SPED and other challenges) and I’m tempted to say, “Oh, I got this in a fight with a SPED director. You should see her!” But truthfully, you should see my closet doorknob…!

Been on the Induction Phase of Atkins since New Years and I lost two pounds! I am trying to lose eight more, to see if it makes a difference in the mid-section vis a vis dancing.

Nat loves BeyoncĂ©’s “Irreplaceable.” I started singing it, “To the left, to the left…” And I paused and looked at him, and he sang the entire song, in a lovely mellow voice. Be still, my heart.

I also received a phone call from Nat this a.m., for the very first time. I heard a lot of noise in the background a familiar little voice talking very fast. I realized who it was and shouted, “Natty? Hi!!!” He said, “Hello Mommy.” And then I said, “Hi, how are you?” and he said, “Fine, fine, Okay, Goodbye.” And he hung up.

Better than some calls I’ve had to endure from NTs.

I am really enjoying receiving NO COMMENTS. I have been getting daily emails from readers and I can then answer them personally, and it is so much more real than a comment. It suits my emotional makeup far better than the random whirlwind of comments that used to assault me. When given the choice in a relationship, I will always opt for the more intense connection, even if that relationship is blogger-blogreader.

Tuesday, January 9, 2007

Eye on the Prize

Excellent team meeting today. How often do you hear that? But I felt very proud of the team; we all had our roles to play, and yet we came to an agreement that, give or take a phone call or two, should probably work out to Nat’s benefit. The compromise I have made is that I am now being trained to run ABA-like programs in our home. I am, therefore, dedicating several times during the day when I have to stop what I’m doing and follow a certain protocol to get Nat to respond a certain way, and then take data on the results. This is very non-Susan. But it is the only way to parent Nat, to begin to teach him independent thinking and actions, so that is what I’m going to do.

I’m also going to train Max and Ben to do the same. No one is to get Nat anything without his initiating it, and the way we get him to do that is to stand near him when he starts pacing in the kitchen (that is his signal to us that he wants something). We stand near him and don’t look at him, and he is to go up to us and tap us on the arm and request whatever it is he wants. He is really improving at it, too. For Nat, the issue is to understand what we need from him. He does not intuitively know these things, but once he is taught, he is willing to do it. He is, after all, a Sweet Guy and he is Miniman who does what he can.

But I may be getting some assistance from my school system for additional home training, so that is the piece I am cheering about. That is the part we worked hard at getting. We shall see. But it felt very positive today at the meeting, with everyone on the same page, as they say.

What doesn’t feel good is: I have a black eye!!!! I bashed on the doorknob of my bedroom. What a ridiculous clichĂ©! but it is true! I was bent over, putting on exercise clothes in the dark, and my closet door was ajar. As I straightened up, I smacked right into the hard metal doorknob. I could not believe the pain. I sat with Boo-boo bunny for almost an hour, but I still have a lot of swelling and black and blue, as if I went nuts with the eye shadow.

How do you explain to people that you really did walk into a door? It is only those who know Ned who would believe me!

More news: I’m taking a new workshop with a dancer named Sabrina who is supposed to be wonderful. The workshop is “Improvisational Strategies.” We will learn how to dance to any piece of music. The place is a bit far for me, down in Quincy, but today after our team meeting, Ned showed me how to get there. Sometimes if there is something new I’m to try and also in a difficult town, I get cold feet. I don’t want to start not going to things out of strange fears — been there, done that — so I’m making myself go, full anxiety ahead. Also, what will they all think of me with this eye? I’ll have to pile on the eye make up so no one can tell, but if the workshop is as good as it sounds, I’ll sweat it all off!

Tabblo: Eye Got Hurt!

I have a black eye!  Here’s what happened… … See my Tabblo>

Monday, January 8, 2007

Ben, The Two of Us Need Look No More

Tabblo: Beauty of The Beast

I call you Beast
But we both know
That is a lie
For you are soft and tender and sweet
as my garden in July —

As a baby, you used to wear hats all the time
to protect yourself
And now you wear toughness
Third grader style
(A gap-tooth smile)
You put it on
Meticulously every day.
But it comes off at night
When you are dreaming, under
the faint glow of your nightlight —
Still a little afraid of shapes around you
And your little blue bear
sleeps with his eyes open
inside your curved flannel elbow

No Comment

I am experimenting with a format change to my blog. I have disabled comments, in the hopes that it will alleviate my anxiety. (You see? Here is one of many positive outcomes of disability!) As brave as I want to appear, I must admit that every single time the word “Anonymous” appears in my Inbox, I get a stomach ache. Even with commentors who have names, I never know what I’m going to get. It is like opening Doors One, Two, or Three in Let’s Make a Deal: sometimes you get the grand prize, sometimes you get one hundred cans of SPAM. Or worse. Sometimes I get nothing, and I devote energy to wondering why. I just do not have the constitution to be out there so much, target practice for every blog troll on the Internet.

I will, however, miss hearing from many regular wonderful readers and it is my sincere hope that you will continue to write your responses, ideas, questions, etc., but just use my email address, Many of you already do that, and I love it. But this way, I can just keep blogging and not have that addtional anxiety over what I’m going to get.

Ned tells me I get 10,000 hits a month. I certainly don’t get that many comments, so that means that most of you simply read it anyway, without the need to comment. Fine. Now I’ve made it official, or at least experimental: no comments. I’ve got to take steps to protect myself. But (friendly) emails are always welcome.

Sunday, January 7, 2007

Younger Daze

Nat’s B-Ball Team

A typical practice.

Tabblo: Nat's Special Olympics B-Ball Team

Shimmy, Shimmy, Hip Pop

This blawg post (that’s Bostonian for “blog post”) is going to be about belly dance — for a change! (HAH!) So if you came just for the autism, you might want to skip this one, but it’s all me, and I gotta just sing about what’s in my heart right now.

Last night I watched my new DVD, which is The Heartbeat of Bellydance: Rhythm and Bellydance Combinations for Drum Solos, with Jenna and Raquy. This one is just loaded with instruction, so it is perfect for me at the moment, because it is all about demystifying the drum solo. In addition to teaching three different types of drum solos, the DVD also teaches shimmies. So now I know how to shimmy while doing all different sorts of movements: undulations, reverse undulations, hip circles, hip slides; so it kind of looks like you are making tiny jackhammer movements while making another move.

So I put on a black bikini top and loaded it up with beautiful shiny trimmings that Ned had bought me for Chanukah, as well as a big rhinestone brooch that had belonged to my Grandma, and the ruby red petal skirt, and a black lace shawl tied around my hips (that Ned had bought me from Frederick’s of Hollywood, a great resource for inexpensive belly dance accoutrements, plus the articles are good, too…). This color combination, red and black, was exactly perfect for my mood: intense, focused, astoundingly energetic and happy.

I did the drum solo for Ned and I did it perfectly. It was fun dancing in the skirt, just like Jenna on the video. I was happy to see that she is built a little like me, although she is younger and her belly is just a bit tighter. But I’m getting there (the tighter, not the younger part). Then I practiced the shimmies + isolations and I did a bunch of them just right! I now understand one particular movement I’ve been observing in performances, and I know how to do it now.

Just now I showed Ned. I did a hip pop, hip circle, hip slide + basic shimmy + shoulder rolls. Three different speeds, three different things at once. Four, if you count my smile.

The Re.F.U.S.E and F.O.R.C.E Protocols

There are many autism approaches under this sun of ours, but they often boil down to basically the same thing: focused interactions with positive rewards. I know this will probably offend the rigid ABA-ists or RDI-followers who read this, and I apologize to them, but this is what I believe. Educating Nat succesfully is all about connecting but is also about familiarity and repetition, and reward (which can be praise, candy, or just letting him go do his own thing after completion). It is no secret that I use bastardized ABA , or Floortime-infused ABA, if you must call it something traditional, teach him many skills. Of all the approaches, strategies, therapies, etc., out there that I have researched or tried (and I have been doing this for 14 years so I have looked into many), this approach, of repetition, breaking a task down into doable steps, and positive reinforcement only, has been the most beneficial for Nat. I don’t live by it, or preach it, because even Floortime-infused ABA has its limitations and flaws. ABA’s origins are pretty dicey, trained dogs, punishment, fudged data, kids who were dropped from the final results, etc. You shouldn’t know from it, as my grandmothers would have said. And Floortime/RDI can be too annoying for Nat; he doesn’t respond well to overly silly attempts to get his attention, which can make him more mischievous or determined to wipe that smile off your face (or that funny hat off your head). Not that there’s anything wrong with it.

No, I don’t believe that any one approach out there will successfully educate a complex human being such as Nat. Education and learning is a shifting and evolving thing, that must be adjusted as a person grows and understands more of the world around him, and as his needs change. That being said, the general ABA style, of positive reinforcements and small steps, is one approach with which Nat is most comfortable, because he knows it so well. He has also benefited from Floortime-ish or RDI-type interactions, which are really just about playful parenting, building connection. But no one approach “works” with Nat, who is a teenager and has his good days and difficult days, and who gets wise to me whenever I try a new relational strategy. He is most comfortable learning with the ABA prompt- do it – reward protocol; he has been exposed to this method for so long that he is an expert at it! Once he gets what it is you are looking for from him, he will perform the task. For Nat it is about understanding what you want him to learn, more than the task itself. (This is why he does terribly in I.Q. tests because he is usually being asked to do something or reason something out that he’s only rarely been exposed to if at all, and so he does not understand what is being asked of him in terms of the test itself, even if he truly knows the material. So frustrating. I hate I.Q. tests, don’t speak to me of them.)

I’ve been running two ABA-ish programs with Nat for the last six weeks, as steps towards independent living: initiating, and first aid. I have had great progress with the first aid program. We are supposed to show him a cut and say, “Nat, I have a cut!” and he is supposed to go find the first aid kit and take care of it. They taught him this at school, with Nat using latex gloves, cleaning the cut, and bandaging it (they draw a cut with red pen, but sometimes they have real ones).

So the first time I did this at home, I began by showing him my cut, and what did Sweet Guy do? He kissed it. I guess the protocol is different when it’s a loved one who is cut. I’d say he got 100% with that one!

The initiating program we have been running is far more complex. This is kind of a psych-out game, I find. Here I’m supposed to stand within 5 feet of Nat when I know he wants something, not make eye contact, so that he will realize on his own that he has to come to me and ask for whatever it is. It is so ironic to me that I am not supposed to make eye contact, that Holy Grail of autism education! That is because Nat has already progressed pretty far in this way, in that he waits for eye contact (expectant look, it is called in ABA) before he asks for anything. But we are trying to get him to come to us, to not depend on our glance! So this is difficult for him to learn or perhaps it is that he does not enjoy deciding for himself? I don’t know.

So when he paces around and comes into the kitchen area, I nonchalantly stand up and walk closer to him, looking everywhere but at him. Yesterday he did it; he must have been really hungry! Today he saw me, but walked away quickly. This could go on for a long time, because this guy would rather pace undisturbed but hungry then have to ask me for something!!! But I think our failure here is because he still does not quite grasp that all is within his control here, that, ironically, what I want from him is for him to tell me what he wants from me!

Our team meeting is Tuesday and I will present this data, such as it is, to them. I am not sure what to conclude vis a vis being able to teach him things on my own. I know that I can; but I am not nearly as organized or focused as a professional would be. I still feel that we need someone who is not Nat’s parents to come in a few hours a week and work consistently on several of these kind of programs to teach him independent living skills. Things get all sloppy and confusing for Nat when we suddenly switch to running programs with him (as in the delightful kissed wound or the elusive retreat from initiating).

But more and more, I feel that Nat is improving in terms of communicating and joining in with the world. This is because he is becoming more comfortable in this crazy world of ours due to development and understanding and exposure. For Nat it is about Repeated Familiarity and Universally Sweet Encouragement, (ReFUSE) and and Fearless Openhearted Repetitive and Caring Exposure (FORCE), more than anything else. All he needs is to become familiar with something, anything, almost, and he will eventually do it and like it. This is what happened with reading him books, when he was a tiny boy (remember the Corduroy story, chapter 1?) taking him to parties and holiday gatherings, with teaching him swimming, with taking him to movies, and now with playing on a basketball team. He is better and better at listening and responding to the others on his team; yesterday Phil passed him the ball and he caught it. He also took a shot and made a basket. Last year was much worse.

And so, I have come to see that of all the approaches out there, ReFUSE and FORCE are my number one autism strategies. Ned and I invented them, and I’m sure many of you are already using them in your own adaptations. That is the cool thing about ReFUSE and FORCE. You can adapt them to fit your own lifestyle and no one feels like an idiot using them! They costs nothing, there is only one book to buy. (Just kidding!)

It is not always possible for me to follow through, but Nat seems to thrive with them. ReFUSE and FORCE are my favorite approaches, not to be confused with “refuse” and “force.” There is no “forcing” in FORCE, and no “refusal” in ReFUSE. They must be practiced with a real smile, hidden sweat, eyes on the kid, employing your spine, your muscles, your heart, and your metaphorical cojones.

« Newer PostsOlder Posts »