Turn it on!

by Mary on September 25, 2010

In the past few days, the J-man has learned to turn on (and off) lights and a fan. I’m fine with the lights flashing, but the fan is a little scary, so we leave it unplugged when he’s going to be in the room. It really seems to be an “all of a sudden” insight for him, that HE can make those things happen. Before, he would take our hands and lead us to whatever he wanted turned on, possibly even put our hand on the switch… but wait for us to actually do it. Not anymore!

It seems like a lot of things have suddenly turned on for him. Part of the J-man’s IEP is that he will do the motions in a song 50% of the time. This is actually a goal from last year, simplified, because last year the goal was 80%, and he just couldn’t do it. It wasn’t like they didn’t work VERY hard on this goal… he just wasn’t proprioceptively ready to do it yet. He understood what they wanted him to do, and we worked at home on signing along with Rachel and such, but really, it just wasn’t happening.

Lately though, he’s been doing motions with songs! A lot! I realize this sounds like very little to some people (and watching Dale Jr instinctively do motions makes me understand how people are incredulous that this is a goal on an IEP), but it’s HUGE for the J-man.

He’s also suddenly trying to sing along with certain songs. We watch a lot of Pinky Dinky Doo here and Pinky sings quite a bit during the show. Not only that, she uses the same phrases when she’s trying to come up with a solution (“It’s time for me to think big!” “Come on Pink, THINK!”) The J-man is doing his level best to speak along with the phrases she commonly uses, and he tries to speak along with all of the songs – while requiring Mama and/or Daddy to sing along. I realize that this is echolalia, and that the goal is eventually spontaneous language, but from what I gather spontaneous language comes after echolalia for most kids in language progression.

It’s like a switch has been flipped. And I say, TURN IT ON!

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One Inch Closer

by Tim on August 26, 2010

The journey of a thousand miles begins with one step. – Lao Tzu

We recently had our annual IEP meeting, which we are thankful beyond words is actually a fun experience for us. We feel like we completely lucked out in getting great teachers, therapists, parents, students, and administrators!

While the J-Man had several very rough patches over the last school year – precipitated by becoming a big brother and realizing this little person in the house was actually staying – he did make great strides in some areas. And we are so happy and proud of him that he’s starting off this new school year with a bang.

We brainstorm his educational goals for the coming year with his teacher during the couple of weeks prior to the IEP. We don’t officially write anything until it’s time for the actual IEP meeting, of course. Brainstorming beforehand speeds up the meeting. We just start out with whatever array of goals we have for the coming year and then look at which ones are appropriate for the IEP. Examples: “We’d like for him to eat some new foods” isn’t really an educational goal let alone a measurable one, but it’s an informal goal we know we’ll work on together at home and in the classroom. “The J-Man will imitate up to 8 motions in familiar songs/fingerplays with minimal prompting 50% of the time” is one of his actual goals for the next school year.

Not surprisingly, those educational goals for the IEP are for areas in which he is ‘behind’. As we’ve said numerous times in the past, we have no idea what a ‘typical’ five-year-old is doing at this age to have some benchmark to work from in creating those goals. So we just list everything in our brainstorming and figure that part out later.

We already knew his reading skills have been above, if not well above, age level for some time. With him being only minimally verbal, it’s hard to know with much precision. As a result, we’ve not had any reading goals in his IEPs. Over the last year, he’s been able with decreasing assistance to write a couple of letters, particularly ‘E’ and ‘F’, and he’s working on some more. (The school uses the Handwriting Without Tears method, which has worked brilliantly for him and the class.) So a goal Mary and I put on one of our lists was to expand his writing skills to additional letters. What we didn’t realize initially is that the J-Man’s writing skills are pretty much at age level right now! Woo hoo! That’s news you love to hear! Of course we’ll be working on those additional letters, but we can cross that off the formal, IEP, educational goals for now.

There was a specific achievement we were particularly proud of him for. He’s graduated from his fine motor skills work with the occupational therapist! He’s able to do the various ‘age-appropriate’ tasks asked of him! He’s even renowned for his wild finger dexterity because he’s been known to hold a bunch of snacks in his hands and manipulate other objects at the same time. To think that we started years ago where he refused to even hold anything and then struggled to learn every new task because of all the fine motor planning and sensory revulsion involved. This really is a momentous achievement for him. We are so proud!

Sure there are a lot of areas in which he still struggles, but that’s OK. We’re getting there, and he’s bravely working to overcome all the obstacles still in front of him. It’s important for each of us to celebrate every achievement our kids make no matter how seemingly small those may be. To our kids they can be like winning the Super Bowl. And we should jump up and down and run around in the confetti with them.

Every great milestone they reach comes from the seemingly unending line of inchstones our kids have strung together, one hard-fought step after another. One more second of eye contact today may be one inch closer to more comfortable social interactions as they get older. Just getting the J-Man to put his lips together as one of a number of things that have to happen to form the ‘p’ sound is one inch closer to better communication. A bite of a different food, sleeping 30 minutes longer, a rare embrace, a beaming smile, a calmer trip to the store, and any of a multitude of other victories bring us one inch closer to our kids being able to express their wonderful selves as completely as they can.

This is an ultra-marathon we’re all running, but if today or tomorrow or whenever we get even one inch farther down the road, someday we’ll get to points like we just had when we look up and realize we just tripped over a landmark. We can look back in the direction we came and see how far we’ve come. And then we can face forward again out into that unknown and say like the explorers of old, Well, we made it this far and we’re still in one piece. Let’s keep going and see what’s next.

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After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.

I’m not saying last year’s team – compiled by the county school system with no one on the team from the J-man’s current school – weren’t good people. Far from it. Some we liked quite well, but with a couple of people, we did have some adversarial relationships, and it was clear that it wasn’t exactly a cohesive unit of people used to working together. We got off on the wrong foot with our case manager – and never really got back on the right one – and we so totally distrusted the process at one point that we never really quite got over it.

The end result last year was that we completed the process knowing that without all the work we put into it and without all the pushing and standing firm we did, we very likely wouldn’t have gotten what was appropriate for where the J-man was then.

What we didn’t know back then was that we had gotten the IEP Powerball as an added bonus, almost by sheer luck (albeit with a system we admittedly gamed a bit). We got a school and a set of teachers and therapists beyond our wildest dreams.

To say this has been an amazing first year of preschool for the J-man would be a serious understatement. He continues to grow and thrive and learn and do things that astound us. He has worked so hard, and he has had the best teaching and support we could have ever dreamed of.

Around the table the other evening for IEP 2009 were Mary and I, his lead teacher, the teaching assistant, his speech therapist, his occupational therapist, and the school principal. We talked about the J-man’s many great accomplishments and the areas that still remain a challenge for him. In my mind, we were remembering and celebrating the great year he had and diving in with hope and enthusiasm to plan for the future.

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The title describes one of his IEP goals for this year. I think he’s a bit beyond having mastered this. He’s close to a color matching black belt these days.


The middle stack of blocks is a pretty common pattern for him in his little construction projects. He layers the colors together, and it seems like there’s a deeper rhyme to his reason, but I haven’t quite figured it out yet. I watch him build these things, and he studies the shapes of the blocks carefully and matches them that way too. I thought the single yellow block on top was him giving it some sass.

The tower on the right shows both some interesting layering patterns but also a lot of size and shape matching along with the colors. I’d love to know more about the bottom, green block and what he was seeing there.

That’s a pretty symmetrical tower compared to some wacky ones he’s come up with. Color layering is a consistent trait of most things he builds, but he’s built some elaborately convoluted structures with stuff going every which way. They have this Seussian impossibility to them; I have no idea how some of them stand up. We bought him some Duplos for Easter, and that was definitely a big hit.

Of course, he’s got the skinny red skyscraper on the left. Speaking of which…


Probably not something you’d find in the 100 Acre Wood, but an impressive stacking feet nonetheless. This and the height of the table combined, the top block is several inches above his head. He was very serious about the layering here too.

He went from hating building with blocks to loving everything about blocks in no time. Now, he’s a building and color expert. Go figure. Nothing if not full of surprises!

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In our last IEP goals recap from last quarter, the J-Man had a great nine weeks overall and showed great gains. This past quarter just ended last Thursday, and our little superstar continues to make great strides toward what we thought were some pretty ambitious goals for this year.

As a refresher for those curious about how we do things around here, the quarterly evaluations are done based on how well the kids are progressing toward meeting their IEP goals for the entire year, and then they’re assigned an evaluation code based on the following scale:

1 – Insufficient progress to meet IEP goal by end of year; below expected mastery of goal at this point in the year
2- Skills are emerging; mastery of goal is still inconsistent; student needs support to meet goals
3 – Consistent progress toward goals; on track to meet annual goal
3* – Consistent progress toward goals + some evidence of application and independence (Not sure why they need another 3 score here, but whatever. “Application and independence” are definitely two words we like.)
4 – Annual goal has been mastered; able to generalize the skill independently in multiple settings.

As I mentioned last time, don’t ask me why they felt the need to add a 3* in between 3 and 4 rather than just fix the scale to begin with. But anyway…

We rounded the halfway mark of this year early in March, so in light of that, his progress toward goals he has a few more months to meet is awesome.

Here are those categories and all the great stuff he’s been up to lately.

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This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 1)

February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all […]

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Climbing Up the IEP Goals Ladder – “What a Great Quarter!” Edition

December 17, 2008

We had our end-of-quarter Parent/Teacher Conference yesterday, and we all celebrated how great the J-Man is doing in school. Since IEPs are all about annual, specific, measurable goals, these four-times-yearly conferences with the teacher are about seeing how he’s meeting the measurements established by those goals. This allows you to make mid-course corrections as needed, […]

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