update

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! :)

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.

"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.

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....

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?"
"Nothing."

Child development is a mystifying and powerful thing.

report on our latest RDA

We've spent the better part of the past week or so driving back and forth across the state to meet with our RDI Program Certified Consultant so that she could perform an RDA (Relationship Development Assessment) on Jacob. It was time to get an "official" view on where we're at with RDI, especially in terms of the new stages/objectives, and to make sure there aren't any holes that need patching.

We did, in fact, find a "hole", back in Stage 2. Which, although that might sound a little depressing given that we were starting to look at Stage 6, was actually good news -- it explained some of the subtle differences we were seeing in several stages worth of objectives that he'd pretty much mastered, but just weren't quite where they needed to ideally be. The Stage 2 objective we're missing has to do with him caring about what I think of his ideas. This is something that will stand in his way of being able to truly collaborate -- without caring about what his partner on a project thinks about his idea, there is no motivation for him to negotiate with his partner to come to a mutually agreeable conclusion.

In Jacob's case, this presented itself as him being too willing to just adopt whatever the partner (whether it be me or our consultant) suggested, even if it meant abandoning his idea altogether. The effect percolates up through many of the objectives above this stage, and certainly will prevent him from developing proper collaboration skills. So, obviously, it needs to be worked on prior to anything else.

Our consultant also assigned us a couple of other objectives (stage 5) that are in need of work, and are convenient to work on at the same time as the Stage 2 objective above. They also build on laying the groundwork for collaboration. In addition, there are a couple of Stage 4 objectives that we're going to keep in mind to make sure that filling in that Stage 2 hole will result in firming up of those objectives as well.

Since I'm desiring a couple months to slow down and actually have a break, we're just going to focus on activities that target these objectives through the summer months, and I'll put off learning about new objectives until the fall. By the time he masters what we're now working on, he should be ready to start working in a dyad (with an equally matched partner), which will add a whole new dimension to our RDI program. And with the new RDI Operating System coming on board at some point this summer, I'll have enough things to learn at the technical end of things to keep me busy for a bit.

So, in short, Jacob's made remarkable progress since our last RDA (when I was fretting over the fact that he couldn't even make the simplest of choices -- wow, but we've come a long way!). But he's still got Autism, even if nobody outside of an RDA session could identify it as such. And so our work continues.

SOS success -- s'mores

I really wasn't sure how this would go over, but Zoo Boy badly wanted to participate in the s'mores making activity that was being held during a family parks day event we went to this weekend. So I went ahead and popped a marshmallow on a stick for Jacob too and handed it to him, guided him over to the fire, and got him toasting it.



After tending carefully for his marshmallow, Jacob let the woman running the activity pop it between two chocolate-covered graham crackers. Imagine my surprise when he readily took the oozy, sticky treat from me!





Then he completely exceeded my expectations by actually TASTING it. And guess what? He LIKED it!!!! (Well, duh, he loves marshmallow peeps, but I didn't even need to tell him that it tasted like those to get him to take a nibble.) He ate quite a bit of the marshmallow from around the outside before the sensation of holding all that goo become too much for him and he started frantically looking for a place to ditch it and some running water to wash his hands. (I found a place for him to ditch it -- MY mouth! It was YUMMY!) We talked a lot about that the rest of the day, how cool it was to try something NEW and how he LIKED it, and now we can have campfires this summer and make s'mores. We talked about REAL s'mores, and how they are made from marshmallows (which he just found out he likes), hershey's bars (a long-standing favorite of his), and graham crackers (also a "Jacob-approved" food). And he expressed excitement about future opportunities to make s'mores. (And I'm pretty excited about it too! :-)

In another SOS success this week, he willingly touched an icecream sandwich to see how cold it was. I commented at the time that it was made up of things he likes -- sugar cookies, m&ms, and vanilla icecream. I'll have to buy the same icecream sandwich again this week and remind him of the s'mores, also made up of three things he likes. Maybe we can even get a nibble out of him!

By the way, in case you're wondering, Zoo Boy did NOT try the s'mores. Or the icecream sandwich, although he did hold the icecream sandwich for a brief time and at least considered taking a bite.