Saturday, March 17, 2012

5-7 year mission preview, realized

I know that an update on this blog is more than overdue, but it took me awhile to look up the facts and find the time to do this story justice. Trust me, it was worth the wait!

In January 2006, back when J looked a lot more like this photo (he's on the left), I went to the RDI 4-day parent training. One of the exercises that Dr. Gutstein had us do was to create "mission previews" about how we anticipate RDI changing our lives in the short term (1-2 years from now), in the mid-term (5-7 years from now) and in the long-term (10-20 years from now). The idea was to realistically imagine a scene from our lives during those time frames and write down how our lives will have changed. We're talking minor things here, how our everyday life is going to be altered by RDI, not grandiose goals or technical statements. (You can read here a post about how my 1-2 year misson preview came true.)

Well, here we are 6 years later, and J looks more like this now.

And here's what my mission preview from 6 years ago looked like:

a scene 5 years from now:

phone rings:

voice: "Hi, this is John, can I talk to Jacob?"

I call Jacob in from the yard where he's playing baseball with his brother and a few friends. He yells "be right back!" as he comes running.

Jacob: "Hello?...Oh, hi John! You should come over, we're playing ball....Hey, Ma!!! Can John come over?"

me: "Ok, but we have to leave for Grandma's in a little while."

Jacob: "Yeah, come over now! We can play ball until I have to go to my Grandmother's birthday party."Jacob yells "Thanks, Ma!" as he runs back out the door.Sounds of laughter and fun from the yard.

This mission preview shows my 5-year vision of a "normalized" life, where we all will have moved beyond therapy being the central focus of our daily lives, and a 10 year old Jacob will have moved on to the important work of being a "just a kid" rather than a "kid with Autism".

So here's a real-life scene from this past summer, 5 1/2 years after I wrote the above wished-for scene. That's a 10 year old Jacob in the red shirt, playing catcher. Here's how this scene came about:

We were at the park with other homeschooing friends, enjoying a lovely late summer day. I was chatting with other moms, and two boys with gloves and a bat walked behind me.

One boy to the other: "Hey, ask Jacob, he'll play with us."

The other boy: "Jacob, wanna play ball?"

Jacob: "Baseball?! Sure, good deal!"

The boys run off to the ball field together, grabbing another couple of kids on the way.

Just to prove how much Autism is NOT a part of our daily lives anymore, I didn't recognize the scene right away. But several minutes later, I looked up to see my son playing ball with his friends and the significance of this scene and how it came about bowled me over. I burst into tears, and then had to explain, through sobs, to the bewildered moms I was talking to why I was suddenly an emotional wreck. "Well, take a picture!" one good friend hollered.

So I did.

Thursday, August 19, 2010

how 'bout an update?

I thought it might be nice if I posted a yearly update here on this blog, for anyone who is not bothering to read about us over at my active blog, Along The Crooked Path. That way I actually physically look at this blog once a year, and anyone who is just interested in the Autism Remediation stuff can get a yearly glimpse into what Autism post-remediation looks like, at least for one family.

Jacob will turn 10 in October of this year, and it's been almost a year since his Autism diagnosis was officially dropped. Of course, that doesn't mean there aren't still things that we work on, or that he doesn't still have challenges, so it's nice to have a place to think about that stuff and put it down in writing. And it's nice to get to showcase his strengths and achievements!

The biggest change in Jacob's life over the past year has been his involvement with dance. I allowed him to watch So You Think You Can Dance last fall (during their season 6) as I found the show very enjoyable and thought he might like it, too, since he'd expressed an interest in dance at a very young age (about 4), before I felt he was old enough to decide he wanted to do it. Well, he absolutely fell in love and insisted that I sign him up for dance classes right away. Right after the winter holidays, he participated in a try-it dance class at a local children's museum, and afterwards the teachers begged me to get him started in classes.

So I brought him to a local dance school and turned him over to the folks there. They got him started in Ballet and Jazz/Hip-Hop and Musical Theater. And I watched as the child who usually cooperatively got in the back of the line to wait his turn in every other situation turned into a take-charge, self-assured child who always volunteered to go first and readily asked questions about dance theory and methods. Despite only having danced for 3 months, he was given a solo part in the spring recital and performed the role of The Big Bad Wolf in the Sleeping Beauty ballet, opposite a girl who had been dancing for 6 years.

This summer he participated in 2 weeks of all-day dance camp, easily keeping up with students several years older and vastly more experienced, and took a short 5-week class in Modern, from which he was promoted to the next level for the fall, and received an invitation to audition with a Modern dance company. This fall he'll start dancing ballet at a school specializing in that, as well as continuing Jazz and starting Tap with his former instructor.

For a child that continues to have problems expressing himself verbally, he certainly has no problem expressing himself through dance, and he's already started dabbling a bit in choreography. And he gave me my very first dance lesson, and I couldn't believe how good a lesson he pulled together for me. His dance teachers are very excited about him, and I'm so happy we chose homeschooling for him so that we can easily arrange his schooling schedule around his dance schedule.

He also auditioned for his first Musical this summer and landed the leading role of Oliver Twist in the musical Oliver! He loved every minute of the rehearsals and performance, but afterwards decided to put acting on hold for awhile so he can concentrate on dance this year.

The homeschooling is going very well. We'll be starting 3rd grade with him this year, which means he's only a year behind where he would have been if we'd kept him moving at the pace for his age. And that extra time has allowed him to become very solid in his areas of difficulties, including comprehension, language arts skills and creative writing. This past year he began writing in cursive and working on story summaries. His drawing skills are really wonderful. He's very advanced with science, his understanding and abilities somewhere in the high school range, so I'm not doing a thing to purposely work on that, I just allow him a lot of access to science museums and written materials to keep him happy. He also has an aptitude for math, but I'm keeping him more on pace with his grade level so that I can make sure he's getting a solid base that is related to real-life situations with that.

Socially, he gets together with other homeschoolers almost daily, taking classes, participating in co-ops, or going on field trips. He gets along great with everyone, although he's yet to develop a close personal friendship with anyone other than his brother. Other than dancing and science, his interests include singing, building with various sets and materials designed for that sort of thing, spending time in nature, and reading anything he can get his hands on (although I limit his fiction reading to those books designed for kids of his emotional developmental level).

In this photos he's doing one of his chores, using one of our Collies to move the sheep to another pasture. In addition to doing farm chores for us, he also works for a neighbor taking care of his chicken flock.

We started back with OT (Occupational Therapy) this summer after taking a couple of years off to work on our own at home. He has lingering issues with trying to put his thoughts into words, and struggles with constructing verbal sentences. We all agreed that it isn't a speech issue, but more of an Autistic brain issue, and we're hoping that working on some Sensory Integration stuff, along with the Therapeutic Listening program, will help cause a bit of reorganization of those brain patterns that are holding him back. Besides his food issues, this is really the only recognizably lingering remnant of his Autism. Otherwise he's living a very full, social life.

In starting back with OT, I was surprised with how many challenges the therapists are finding with him. Little things, that I'm either just not recognizing at home, or that I've just gotten so used to as "him" that I haven't given it any real thought. I'm happy to have outside folks looking at what he's doing and giving me feedback. It's the only drawback I've found with homeschooling -- since I'm not comparing him in an ongoing basis with his peers, I don't necessarily pick up on things he's doing (or, more to the point, not doing) that are not typical. I'd be getting that sort of feedback from teachers if he was in the school system. But all things considered, he's much better off at home, and it's easy enough for me to pay for someone to give me that type of feedback.

Food is still an issue. He still eats about 4 basic meals and a handful of snack type items and that's it. He'll try pretty much anything I put in front of him, but it has yet to translate into new foods in his repertoire. The OT is going to start some work with him on that at some point, but I'm not holding out much hope. Fact of the matter is, he eats a pretty well-balanced diet and gets everything he needs to stay happy and active. And that's the most important thing. At some point (or so I assume) he'll take more of an interest in what he's eating and will make changes if he feels it is appropriate. In the meantime, it's just not worth spending my time worrying about too excessively.

And I think that pretty much catches us up with what's been happening around here the past year! Thanks to everyone who reads here and continues to give me feedback -- it blows me away that people are still finding this blog pertinent despite the fact that I've not really posted anything of any substance here in 3 years!

Friday, September 18, 2009


I'm not even sure anyone is reading here anymore, but wanted to update anyone that happens to stumble across this blog that Jacob's Autism Diagnosis was officially removed by his Developmental Pediatrician yesterday. You can read about the details on my current blog, Along the Crooked Path.

For the rest of our journey, just start reading below! :)

Friday, July 13, 2007

moving on

It has come to my attention that the amazing "firsts" and incredible progress stories have turned into a regular thing for us lately. Small bits of development has become the norm, things that we used to consider amazing developmental leaps are now just ordinary daily occurances.

Jacob's taking swimming lessons. I didn't tell the instructor (or anyone when I signed him up) that he has Autism or any special needs at all. It's been one full week into a four week set of classes, and the instructor hasn't said a word to me about him. Just the same smile and hello that every other parent gets, the same wave across the beach to acknowledge I'm there waiting for him at the end of class. I've stopped expecting her to accompany him across the sands to chat with me about concerns or ask for strategies. It's obviously just not going to happen. So I signed him up for a couple of museum classes, with no intention of saying anything to them either.

He's become mobile in the water, comfortable now to lie across his boogie board and paddle. Today he fell off and into the water completely, head and all. He came up panicked, then realized he was intact and smiled and said "That was easy!" got back on and paddled off.

He's trying at least one new food a week. He doesn't like most of them, but he's giving me the benefit of the doubt now when I say that he might like something. He's tolerating peanutbutter sitting next to him.

We went underwear shopping today because he's outgrown the size we started fiddling around with, and, well, he needs underwear. Because he's potty trained. 100% no accidents, not even at night, in 20 days. Probably longer. We have a 50-day sticker chart set up, but as soon as his reward (the coveted Jaba The Hut Sail Barge lego set) comes in, we'll fill that chart with the rest of the stars, hand out the prize, and be done with sticker charts and potty training schemes. We're out of pullups and we don't care. We've even gone so far as to discontinue the Glycolax he's been on for the past couple of years. He just doesn't seem to need it anymore.

Today I walked into a hairdresser with my kids, and BOTH of them had their hair washed by her, and then cut by her. Jacob had his hair washed. At the hairdresser's. And then she offered to cut his hair. And he said YES. And let her do it. And I stood by in shock and amazement and awe and numbness. There were no tears (well not from him! I was a little misty), there was no trauma, there was no resistance. There was just this really cute kid getting his hair cut, chatting with the hairdresser, flinching a bit at the "hard parts" (like around his ear), but patting himself on the back for getting through it.

I think we're there. I mean, I don't think he's "recovered" (whatever that means). But I think we're back on the proper developmental path. He hasn't "caught up" to his same-aged peers, and there's plenty of development left to happen, but I think we can start letting it happen on it's own, in a natural manner. No more video tapes and constant monitoring and checking off objectives. Let's just give the boy a chance and see what he can do on his own.

I take this step with the full confidence of knowing that we're supported by a really great curriculum. The Enki Education homeschooling plan fits our needs perfectly -- a nourishing, sensory-rich curriculum with an empahsis on comprehension and natural child development. It's a curriculum that promotes letting kids "mess around" with just being a kid, which is exactly what he needs. He's had too many of his years unable to do that, now that he can, I want to give him the time and the space to explore that. I don't want to rush him through something that I strongly feel is so important.

So, with our consultant's approval, we're putting RDI to rest for the coming school year. Next summer, I'll pick up the phone and give her a call. We can take a look at the objectives, figure out where he's at, see where he's come on his own, determine if he needs any help to progress with what's left. If the answer is yes, then we'll pick up again and focus for awhile longer on guiding his development step-by-step, nudging him back onto that natural developmental trail that we've now blazed for him. If the answer is no, that he's obviously moving along on his own at a natural rate, we'll close the book entirely and continue onward.

And I'm moving on myself, to only blogging over at Along The Crooked Path. I'm leaving this blog intact, as a resource if anyone should need it, and as a scrapbook of how far we've come. But I'm done posting here. If you want to see what we're up to, you know where to find us.

I want to thank each and every one of you who has ever read this blog, left a comment, or sent a word of encouragement. I wish the very best for all of you on your own journeys, and hope that sunshine lights the path ahead of you.

We may be done with this leg of our adventure, but really, our journey has just begun.

Monday, July 02, 2007

"I love it!"

Words that are music to my ears! Jacob tried a new kind of ice cream treat from the ice cream truck at the lake, and declared victory. A red letter day for us!

Some day I'm going to look back on posts like this and laugh that I was so excited about him agreeing to eat junk food...but for now I'll take what little victories I can and slowly build the memories of trying and liking new foods.

Wednesday, June 27, 2007

sensory updates

This is one of those feel-good, look-how-far-we've-come sort of posts. I LOVE those types of posts! And I'm thrilled when I can write one.

Two years ago, Jacob would only stand on the shore of the lake and would not even set a toe in the water -- he would allow us to carry him in and hold him (while he clung tightly to us), but the sensation of wet sand/earth beneath his feet was too overwhelming for him. Last year he would reluctantly creep into the water on his own, but only if the bank surface was adequately sandy and firm enough. This year, he's bounding into the water regardless of the surface, and is actually spending time making muddy puddles to stomp around in with his bare feet.

Last year Jacob made sand castles by carefully shoveling sand into a bucket of water (making sure not to splash, running in terror if it did accidentally splash), gently turning over the bucket, and stepping back as he removed the bucket from the pile of sand. This year, he digs and scoops the sand into the bucket with his hands, splashing and slopping it as he goes, then delights in jumping into the middle of his sand creation after removing the bucket. Note the sand all over his feet -- last year he would have immediately come in search of a towel to wipe it off. Now he doesn't even notice.

Last year Jacob would not turn upside down -- the inverted position was too uncomfortable and frightening for him. Just look at our little monkey now! Not only will he happily hang upside down, but will do flips as well.

As for our SOS feeding program, he is now able to tolerate a variety of foods in close proximity to his plate. We have even started playing around with putting some of the less offensive foods ON his plate. Slow but steady progress!

And, in the biggest news to date, here he is trying a new food! This icecream pop captured his attention because it was shaped like spiderman. He had a lot of difficulty bringing himself to take that lick (although it dripped on his hands several times and he was able to calmly wipe it off). And unfortunately, he truly did not like the taste once he did try it. But he DID try it! I've decided we're going to play the "icecream of the day" game at the beach this summer -- when the icecream truck comes, we'll buy a different type of treat each day and give it a try. Maybe we'll find something he'll like. More likely, I'll put on a couple extra pounds eating rejected icecream....

Wednesday, June 20, 2007

the next big thing

Following a pattern that he has right along, Jacob's scripting (quoting lines from movies, books, and conversations he hears) tends to increase steadily as he's working on a major developmental gain. He reaches a point where we think we're going to all scream "enough already!", but then suddenly we see something completely new from him that we've never seen before, and the scripting drops off again.

Jacob's scripting has been through the roof the last several weeks, getting worse as each day progressed. In fact, it got so bad, that he started exhibiting other classically Autistic behaviors along with it -- throwing his body repeatedly (perseveratively) into things, hand flapping, spinning. We figured he was either on the verge of something truly spectacular, or we were going to need to start RDI from ground zero again.

Tonight was the magical night where we finally saw what his brain's been working on this entire time.

We've been doing some spring (ok, so it's a little late....) cleaning around the house, and we moved the boys' dollhouse into a different room tonight. Of course, that sparked an immediate interest in it (funny how that always happens) and the boys, especially Jacob, started playing with it. He got things set up the way he wanted them (which is usually where the play ends unless Zoo Boy jumps in and gets a storyline going). The next thing I knew, I could hear a running conversation between the dolls -- but it was only Jacob's voice. I stopped what I was doing as I heard "Hi Hunter, hi Charlotte! I come to visit you from the time machine thing."
I shot a quick look over a The Map Man, who had also frozen in place. I said "Did he just....?" and didn't need to finish, The Map Man knew exactly what I was thinking and said "That would be incredible!"

What we were so astounded at was not only the storyline, being obviously invented and powered by Jacob, but also the use of the NAMES. Was it possible that, for the first time ever, Jacob actually spontaneously NAMED something? After years of trying to coerce him into coming up with names for pets, toys, dolls, creations, artwork, musical pieces, had he finally gotten to that point in his development that he had a desire to create his own labels/names for things?

I couldn't control myself. I scurried down the hall, grabbing my camera as I went. I tried to act casual. I watched the storyline play out a bit -- kids playing in their clubhouse, interacting with their grandfather. As casually as I could, I said to Zoo Boy, "I wonder what their names are..." Jacob immediately interupted his play to introduce me to his "friends". He said, and I quote:

"I named this boy Hunter, and this boy I named Fred. I named this girl Dorothy. And this girl over here I named Charlotte."

I took a couple photos then slipped out of the room as casually as I slipped in to rejoin the Map Man. He asked "Is that from...?" I shook my head. "No, so far as I can tell, that's entirely HIS."

We stood in silent wonder for awhile. In the background the dolls' conversation continued:

"Oh, hi there kids!"
"Hi Grandpa!"
"What are you kids doing?"

Child development is a mystifying and powerful thing.