Measurable Progress

Someday I will share the full story of how and why we pulled Moe from school. For now, it is enough to know that he was not progressing there. What started as a desire to secure additional extended school year services (for summer and other breaks) turned into a full independent evaluation done by a very well respected child psychologist on our dime. She observed Moe in class on two separate occasions, and it was her professional opinion that the school district's preschool program was not appropriate.

Moe has been doing an in-home ABA program since June. He receives about 20 hours a week of in-home behavior therapy as well as an hour a week of speech. In the beginning, the difference was remarkable. While the school tried to convince us that Moe wasn't meeting goals because of his "rate of learning," Moe mastered his programs at home quickly. The school and our ABA provider use the same program so the comparison was easy.

Jeff and I have been thinking a lot about where we want Moe to be next year. Should we continue with a home program? Get him back into school? And if school, which one? We know the district's program is simply not appropriate for Moe, and there are several non public schools in the area. Last year, I visited seven of them, and there are two or three that might be appropriate, though they all have serious trade-offs. We will need legal action to get Moe in one, and we need to be sure the one we choose is the right fit.

I've also been questioning a little whether his home program continues to be effective. Moe is bored at home sometimes. The program is highly scaffolded, meaning that program progresses in small, incremental steps. While his early progress was remarkable, it can be hard for me to see the progress when the steps are so close together. For example, to Moe one sorting task probably looks a lot like another, even though we've added more items or distractors to make the task more challenging.

In order to help us answer these questions, I took Moe to see the same psychologist who evaluated Moe last year. Dr B met us in the waiting room, looked at Moe, who waved to her. She said "such a difference from last year. I can see it already."

I was nervous as we went to her office. Moe can be aggressive and non-compliant and frustrates easily. I really wanted her to see him at his best. This assessment isn't about qualifying for services, it is about making the best decision for Moe. I wanted her to get an accurate picture of Moe's skills.

He did great. By that I mean, he did his best, with no behaviors to get in the way. He showed what he could do and where he still struggled. He sorted. He matched. He imitated and approximated words and blew bubbles. He had trouble with a few areas I know he knows (like pointing to body parts), but Dr B will be here Thursday to see him in a ABA session as well.

This was the first assessment I can remember leaving with a smile on my face. I did not fall apart in the car on the way home. Moe has made progress.

Moe is still severely delayed. He's probably at a 2 year old level or younger for many things. But he's doing better. He's learning. As we were packing up to leave, Dr B said to me  "It is nice to see him learning things and not just pushing toys around in shaving cream."

And in that moment, I knew that we made the right decision to pull Moe from school. I know his progress this year has been real and significant. I still don't know what we are going to do next year. But I do know we were not being unreasonable to demand better for him, that his lack of progress wasn't because of his learning, but because of how he was being taught.

What Moe Can Do: Play iPad

I write a lot on about limitations within our family, things that Moe can't do or reasons it is hard for us to do the types of things your average family with a five year old and a three year old do. We have a lot of those limitations, and they are the kinds of things I usually need to work out for myself by writing about them.

But Jeff and I have been marveling lately at the number of things that Moe can do and ways that he's progressed over the past several months. So I want to spend some time telling you the ways in which Moe is developing and changing. I think it will be good for me too.

So today, I launch the first in a series of posts called: What Moe Can Do!

Moe can play iPad games

Every mother's dream, right? For me, in many ways, yes. For a long time, Moe would take the iPad and just push the button over and over. He would tap an icon to start an app, and basically just randomly touch things or watch the opening sequence then press the button again. And he would drag his whole hand on the screen so that he'd often inadvertently leave an app. He would be easily frustrated or over stimulated.

Moe does well when the iPad is at an angle.
The OtterBox case is great for this and for protection.

Eventually, though, Moe started to be able to navigate the iPad. (Something he could do with ease at 18 months, but lost this ability when he regressed). He learned to slide his finger to turn it on and slide the home screens to find his apps. He learned where his favorite apps were, even those hidden in folders, and can launch them. He learned to use one finger (although he will sometimes use his thumb instead of his pointer), and play games. He was most successful with simple games, like My First Tangram and the robot building part of Toca Robot Lab (see link below). But he is learning to play the more complex parts of the apps now too. For example, after building a robot you need to navigate it through a simple maze. He used to just press the button and start over at that point, but now he is able to complete the game to be able to build another robot.

So why am I so excited about this? In part, it is because it is a concrete way to see progress. I can see more sophisticated thinking going on as he becomes better able to work within the apps. It gives me hope that he may be able to navigate a complex communication system in the future.

But most significant right now is that Moe finally has an activity he can do on his own. He is not good at occupying his time. He will spend his free time bored or frustrated and gets into trouble. He wanders the house, climbs things, bounces off the walls, spins in his swing or empties Jelly's drawers (her hair accessories are way more interesting than anything in his room). The iPad provides activities that Moe can do independently. They require focus, problem solving skills and creativity. I try to balance iPad time with generous amounts of physical activity, but just having Moe sit still for a little while is a huge improvement for both of us.

In case you are looking for some apps for your little one, here are some of Moe's favorites right now. Jelly likes these too, though some are not quite challenging enough for her anymore.

-All Toca Boca apps, especially Toca Band (both kids' favorite right now), Toca Doctor, Toca Kitchen and Toca Robot Lab
-Starfall ABCs
-Sound Touch
-Several of the Duck Duck Moose apps, especially Itsy Bitsy Spider

Over the next few days, I will update my Resources page to include a list of apps we like, but if you are looking for an excellent curated list, visit the spreadsheet over at Squidalicious.

The Paradox of Progress

"It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past." --Elisabeth Tova Bailey, The Sound of a Wild Snail Eating

The kids like watching "So You Think You Can Dance." A couple of days ago, Jelly requested "watch dancing" so I shouted down the hall, "Moe, do you want to watch dancing?" He ran down the hall and plopped on the couch. A minute later, it hit me. He understood that.

More and more, Moe seems to be listening and comprehending. He can follow simple commands, like "sit down" or "let's go." This progress seemed to have taken both years of therapy and happened all of a sudden. This is the paradox of progress.

If you watch a snail creep across the ground, especially from a few feet away, you hardly notice it is moving. It seems like it would take forever for it to get anywhere. But if you look away for a few minutes, that snail will have made progress, and perhaps gone farther than you expected.

So many endeavors are like this, from weight loss to a child's growth and development. The changes happen almost imperceptibly. But then one day, you're packing away old clothes and replacing them with a new size.  Or your son starts understanding the world around him a bit more.

The progress is there. Sometimes we just have to take a step back to notice.

This post was inspired by The Sound of a Wild Snail Eating, by Elisabeth Tova Baily. I was given a copy of the book as part of From Left to Write book club, but was not otherwise compensated for this piece. You can read other members' posts inspired by the book on book club day, June 7, at From Left to Write.

The Work Continues

Yesterday, I wrote about the problems we worked on during 2010. Today, I've been thinking about what I want to address this year. These aren't specific goals - we have plenty of those in Moe's IEP - but some of the more challenging aspects of life that I hope we can make progress on.
Communication - This will be the number one goal for a long time.

Following directions - Moe is getting better about following simple, familiar instructions, but I really want to work on this, especially safety related directions, like "stop!"

Running away - If I'm not holding on to Moe's hand tightly, he'll run, no matter where we are. I'd love for him to learn to stick by my side at places like the grocery store and not run into the street when we're out. I can't take both kids to the park by myself, something I'd like to be able to do.

Neater eating - Moe is the messiest eater I have ever seen. He tears into anything he eats, muffin crumbs flying, cereal bars squished, sandwiches pulled apart, and crackers all over the floor. I'd like Moe to learn to take neater bites of things. He also refuses to eat with a fork, even though I know he is capable.

Bonus! - By this time next year, I'd love report that Moe is sleeping in a regular bed and that we have at least begun potty training.

This isn't a long list, but I know that as the year progresses, and as Moe develops and grows, new challenges will arise. We are getting better at analyzing issues, trying to make sense of the causes and find solutions. But, especially with a kid who does not speak, this is often a frustrating game of trial and error. We hope primarily that Moe's speech and communication will improve enough over this year that we can start to work on these issues with him, rather than having to constantly guess at what he needs.

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How did we do?

As I mentioned yesterday, 2010 was a lot about problem solving. Over the course of the year, I've discussed many issues we've tackled and how we're attempting to address them. Some of the things we're working on are also part of Moe's school goals. Other things, like sleep issues, are issues we have to tackle at home. As I looked back over the year, it was interesting for me to see what issues we worked on, where we have done well, and where we still have more work to do.

Responding to name - Back in February, I wrote about how we were trying to get Moe to respond to his name. At that time, he would respond, without other distrations, maybe 20-25% of the time. Over the past couple of weeks, we've noticed that Moe has been responding to his name probably 60-70% of the time. Usually it is just a fleeting glance in my direction, but it is a clear understanding that when I say his name, he is being addressed. I think this is somthing that has been building over time, along with some increased self-awareness, rather that the result of any specific work we've put into it. But it is great progress. It also makes getting a decent picture of Moe a lot easier.

Making requests - When Moe first started early intervention, a therapist told me that typical kids will make requests hundreds of times a day. I had a hard time believing that was possible, but now that I have a 20 month old, I believe it! Regardless, Moe would ask for help approximately zero times a day. We boxed up all his toys so that if he wanted to play with something, he would need to ask. This didn't really work. He just isn't that motivated by toys, and he learned very quickly to open the boxes himself. And since I had a newborn in the house, I decided it was more important for Moe to be able to organize his time and keep himself busy playing with toys than worry about him asking for help.

Moe is very motivated by food, so we've done a lot of work on requesting "more" or telling us that he's "all done" before leaving the table. The request can be spoken or signed. Progress here has been slow, but we are seeing improvements and just over this holiday Moe has spontaneously brought me a toy to open, led me to the back door and signed open to go outside, and brought me to our bedroom (which has a childproof lock) so he could jump on the bed. He still much prefers to do things himself, but he's learning that he can ask for help and that should lead to less frustration overall.

Spoon strike - I had completely forgotten about the spoon strike from early in the year. This was fortunately short-lived. I figured out Moe was reacting to the fact that I was always feeding his baby sister with a spoon, but that he had to feed himself. I'm not sure if this was out of jealousy or if he was imitating, but after I had him eat without his sister a few times, and gave him chocolate pudding for motivation, he started using the spoon again.

Sleep issues - This is by far what we've spent the most time on. First, Moe was having a hard time falling asleep at night. On the advice of our doctor, we put him on melatonin, just 500mcg, and that does the trick.

Then, Moe started waking up at night. Jeff's theory was that the mattress was uncomfortable, so we got a new one. It helped at first, but it didn't really solve the problem. This is something we're still working on today, although generally has gotten much better. It's one of those things that comes and goes and needs to be addressed differently every time.

Moe also started climbing out of his crib at night. So when he did wake up, there was really no chance of him falling back asleep. So we bought a crib tent, which he likes. It makes his crib a cozy place to be, and I think the zipping up of the tent is another signal that it is time for sleep.

Finally, we realized that Moe's pre-bedtime bath was actually stimulating him rather than calming him down. So we started doing bathtime earlier in the afternoon. This is one of those simple fixes that has made a world of difference.

Regulation- This is also an area we're still working on and seems to be linked to the night waking issue. Moe can be giggly and manic one moment, and melting down the next. We've been working with occupational therapists to make sure his sensory needs are met. We know that when Moe is sleepy or hungry, the issues are worse and we try to stay on top of that. Otherwise, this is something that we have to keep guessing at, and try to give Moe the tools to tell us when he needs something to help him calm down.

I'm still working on my goals I for this year. I'm trying to keep my hopes high but not set too many unrealistic expections.

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Monthly highlights

Once a month, we have a clinic with Moe's team. His entire team of therapists come over and we talk about what progress we've made this month and what new programs we're going to implement next month. A program is simply a new type activity or skill that we want to track. We remove ones Moe has "mastered" and add in the next set of things we want to focus on.

We start every clinic with our favorite stories or highlights from the month. I felt like we didn't make quite as much progress this month as in previous months. This month had two holiday weeks, so we didn't have nearly as much therapy time as usual. And, as I've written about before, the lack of structure during the holidays seemed to through Moe off a bit. But clinic is a good time to remind ourselves the progress we have made and regroup for the upcoming month.

Some of the highlights from this month included:

• Moe has really taken an interest in art projects. He loves to color at his easel, but also at the new table in his room. He played with finger paints for the first time (something he refused to do before), as well as stamps.
• After reading a book to Moe during speech therapy, he took the book and read it back, repeating some of the things we talked about in the book: "Bear is skating," "Bear painting," "Snowbear," etc.
• Moe has been taking a greater interest in Jelly Belly, imitating some of her sounds and actions, like blowing raspberries during the "Mouth Song."
• We've been working on word endings, and he's been getting much better at pronunciation. He'll often be "lazy" about how he says a word, but if we say it back, he'll imitate it. Jeff and I have heard him practicing his words on his own as well, like "horse," "fish," and "goat" with a real emphasis on the word endings.
• I've also been working more on signing with Moe. Because he seems to be picking up speech, we haven't been focusing on signing too much. But since I've been signing with Jelly Belly and we've been watching Baby Signing Time videos, Moe seems to be picking up some. The other day, I gave Moe some scrambled eggs to eat and told him they might be hot. He tried one, and then signed "hot." Our SLP loved this because it showed great receptive language.
• Moe is imitating a lot more speech, and not just single words. He says a lot of phrases as well.

Progress has been good. But we still have a long way to go. Things we're going to focus on this month are:

• Receptive language: making sure language has a communicative function and that he is processing and understanding the language that he is hearing
• Parallel play and "play with me" activities
• "Show me" tasks, to teach joint interest
• Responding to his name

This week we also had our first transition meeting with the school district. When Moe turns 3, his services will be provided by the school district rather than through Early Start. We now have a timeline for his next set of assessments and a date for Moe's first IEP meeting. Although we won't know until then what specific services they school district will provide, we do know what school he'll be attending and we have a general sense of the types of programs available. More on this to come.

Ups and downs

This past weekend was a mixed bag for us. Last week, Moe just wanted to bite everything. Although that seemed to subside a little, Moe seemed to be having a bit of a sensory breakdown, with some pretty manic highs, laughing and running around, and followed by bouts of intense frustration at everything an anything. Nothing in our usual bag of tricks (like deep pressure or a blanket swing) seemed to help. All yesterday morning, he wanted to be in the dark closet, or he would bury his head in my lap or in the couch. We had a 4 day break from ABA sessions, so maybe the change was having an effect on him. I don't know.

Sunday night, Jeff and I had a, ahem, "discussion," about what was going on. I, of course, worry that this was just the first indication of some serious issues we're going to have for the rest of Moe's life, and Jeff takes the view that all two year olds have rough times and that is why they call them the terrible twos. It's a stupid argument to have because no one knows. The night ended with me in bed with a terrible, vision-blurring, nausea-inducing headache which I called a migraine but since I don't really get migraines it was probably a stress headache.

On Monday, Jeff was back to work. We decided to have his OT session at the center where they have swings and stairs and other equipment. As I was telling his therapist about some of his behaviors this weekend, I realized some pretty amazing things happened as well.

First, Moe has really started taking an interest in coloring. He has colored before, but he wasn't really into it. Now, Moe will stand at his easel and draw with crayons or chalk for fifteen minutes or so. He'll pick a color, draw, stand back, admire his work, pick another color. He's very careful about where he's drawing and what colors he's using. It is so cute to watch. I have no idea what's going through his head, but he's clearly thinking about the choices he's making. At the OT session, our therapist watched him color and said his grip is above age level. (I know I shouldn't care about such things, but woo hoo!)

Second, Moe built a tower with LEGO's all by himself. He has never been interested in LEGO's at all. Not even a little bit. And he rarely stacks blocks unless he's almost forced to during a therapy session. But on a whim, I took out the LEGO's and he just stacked a really tall tower. See for yourself. He even put the man on top.

We were all very excited to see developments in those two age-appropriate activities. Like everything with Moe, he doesn't seem to practice things, make mistakes, and eventually be able to do them. He seems to just wake up one day able to do something he couldn't do before. It was like this with crawling and walking too. I wonder if he's been a bit unbalanced because he's going through some big developmental changes.

Finally, we spent some time practicing on stairs. We don't have any at home, so it has been a while since we've had a chance to see how Moe climbs steps. In October, Moe climbed the steps at his grandparents' house by bear crawling up them. More recently, I've had Moe climb steps holding my hand, but had to carry him down. So at the center, he practiced on a set of steps with a kid-height banister and after a bit of encouragement he did them on his own! I like his instinct to reach for a hand, but it was good to see that he could do it solo.

It was a good session and a good day to catch up on his progress. Moe is getting stronger and more coordinated. He is okay with color magic paints now (the consistency of vaseline), but not with shaving cream. He doesn't care much about stickers. I was hoping to get a few more pointers on what to do when Moe is having one of his meltdowns but wrapping him in a blanket seemed to work during session so next time I might try that.

Six month progress report

At the end of the month, it will be 6 months since we started early intervention with Moe. This half-year has been a whirlwind of emotion, questions, worry, stress, loneliness and fear. But it has also been a period of learning and growth for all of us.

Moe has come a long way since we started. At Moe's early start assessment in May, he was basically non-verbal. Now Moe has said more words than I can keep track of. He labels items, and is getting especially good at animal sounds and filling in gaps in songs and books. He still doesn't initiate a lot of language, and although Moe can be quite talkative when he's in the mood, talking is still definitely on his own terms.

We've also noticed that some of Moe's other behaviors have changed or gone away. Moe used to spend a lot of time standing on his head. He loved to stand bent over with his head on the ground in a downward-facing-dog-type yoga pose. Or he would loop his feet through the slats of his crib so he could be upside down. Jeff and I have both noticed that Moe almost never does either of these anymore. Maybe the OT is working, or perhaps his nervous system is just maturing. I'm not even sure if this was a symptom of autism, but it is a change nonetheless.

Moe is also eating better, taking bites out of larger pieces instead of requiring us to cut up his food into small pieces, or tearing it up himself. He'll use a spoon independently. He still isn't drinking from an open cup, or taking his shoes off, two of our IFSP goals. But he will help with shoes by opening and closing the velcro, so that's a start. He's starting to use his index finger to point at objects in books. Pointing is something we've been working on in OT. He doesn't point to show us things yet. He isn't doing much pretend play either, but he is doing great imitation in play, which is a start. I've even seen him taking something we've done in one session, like making a fireman go up a ladder, and do it again on his own.

Moe is also much more engaged. He makes eye contact on a regular basis, and just seems more present. I think he'd still rather play on his own given the chance, and will tune out a lot, especially when he's tired. But don't we all to some degree? We put a lot of demands on this little boy. Unfortunately, things are only going to get harder for a while as we push him to use his skills more consistently.

As for me, I'm coming to terms with how things are going to be, at least for the next 6 months while we're still in early intervention (after that, we start to work with the schools). I've found some good online support groups, and plan to attend a local parent group next month. I need to learn from others who have been there. I'm currently reading Overcoming Autism, by Lynn Koegel, one of the founders of Pivotal Response Training. I am feeling optimistic about Moe's speech, but know that there will be a long road ahead trying to teach the social skills he's going to need in the future. That seems much more difficult to learn, and much more important.

Overall, progress is there, but it is slow. Moe has to develop one step at a time and it can be painfully slow. I hoped that once he started talking, language would just explode. I hoped that once he learned that he can ask for things, he would start to get the concept of social communication, and he would just blosson. As a mom, I can't help but harbor hope that somehow, something will click, and this will all be behind us. That is unlikely and the best advice I've received so far is to make sure not to burn out in the first year. We still have a lifetime ahead of us.

Labor day weekend

Despite Moe coming down with croup, this has been a pretty exciting weekend. A couple of interesting things happened.

First, we've been working on drinking from an open cup, so Moe was sitting at the table with a dixie cup of water. I gave him a graham cracker for snack. He took the cracker, dipped it into the water, and said "dip dip!" We're not quite sure where Moe picked this up, but it was great - and now he's enjoying dipping all sorts of foods (chicken nuggets in ketchup, pita bread in hummus). Unfortunately, he doesn't actually want to eat anything that has been dipped, since the food has now clearly been contaminated with whatever it was dipped into.

The second thing that happened really surprised us. I'm not sure if it is because he has been sick, or just because, but over the last few days Moe has been even pickier than usual about eating. So while I was trying to get him to eat something, I gave him two crackers. He took one in each hand and said "one two." We couldn't believe it!

In general, Moe has been starting to really imitate a lot of words that we say as well as other actions that we do. He said "pita bread" during above dipping exercise. Yesterday, when Jeff told Moe it was time to say goodnight to Mommy, he ran right in to me with a huge grin and lots of eye contact. We see progress, though it is sometimes slow and inconsistent.

On the heels of all of this great progress, however, we have the second half of the ADOS assessment on Thursday. After that, we will have our official diagnosis. At this point, we don't expect any surprises. We are coming to terms with the word "autism" and realize that this diagnosis is going to help us get the services we need. It is also a little bit of closure for me - we know, at least in part, what is going on with him and will have a path to move forward. Then it is back to the regional center to once again adjust our IFSP.

Finally, I want to wish a happy labor day to all the stay at home moms out there. We may technically be unemployed, but we work harder than anyone else I know.

Dad's day at school

Jeff went to school with Moe on Friday to observe the class. Parents are encouraged to come and observe/participate once or twice a month, but it has been hard for me to do because of Jelly Belly. The last time I went, Moe was only a couple weeks into the program.

Jeff had a number of interesting observations, but the primary one is that Moe probably doesn't belong there. Moe does great when he is getting one on one attention at the center but as soon as a larger group is required, he shuts down and tunes out, looking out the window or staring at the lights. The student/teacher ration at the school is 2:1, which is fantastic, but may not be enough for Moe right now.

At one point, Moe was in the fine motor skills room and Jeff noticed that he was looking at an alphabet puzzle. Moe put all the pieces back in the puzzle (with a little help), but he could say all of the letters, including ones we hadn't heard him say before, like X and Z. The staff got a kick out of this, but they may not have seen this if Jeff hadn't pointed it out.

That's not to say the program has been detrimental in any way, but it probably isn't right for him. Jeff spent a lot of time talking to the director of the program and she agrees. This has been the most frustrating part so far. It has been hard to know what is the right thing, and it is hard to be patient with trial and error when valuable time is ticking away.

Meanwhile, we start individual OT on Monday and speech on Thursday.

We also meet with Dr. S on Thursday for the first half of the ADOS-1 assessment, which will eventually lead to a diagnosis. With or without an autism diagnosis, we need to get a very clear and specific recommendation from Dr. S so we can go back to SARC and request another change. We need to know what we should be asking for. And if we can't get the amount of one on one services we need, we'll have to go through insurance and/or pay out of pocket. We will do whatever we need to do.

For posterity, here are some of the things Moe has been up to lately:

• More animal sounds (moo, neigh, woof, elephant, monkey, rooster). Loves the "see and say" toy.
• Lots of "woof" when he sees dogs, real or in books
• Saying words like "ball," "pizza," "bubbles" and "turtle."
• Knows all letters of the alphabet
• Says bye-bye, blowing kisses (occasional)

Progress report

Since my last post was so long, I'll try to make this short. In the past 2 weeks or so, Moe has showed some real progress. Although he is still inconsistent with what he does, I'm encouraged that he has been using more words and verbal communication. I'm especially excited that he has used some words or sounds completely unprompted, rather than just echoing something that one of us said.

• Signs for "more" occasionally
• Said "juice" while drinking a juice box
• Said "baby" when looking at Jelly Belly
• Pointed to Jelly's belly button when asked


• Blew me a kiss when I got him up from a nap. Blew a kiss to Grandma.


• Played with phone - held up to ear and pretended to talk


• Reading books out loud (this is too cute)


• Waved bye-bye


• Ran up to me at the park with a huge grin on his face and looking me right in the eye


• Said "bubbles" when he saw a picture of a boy with bubbles


• Saw a cow and said "moo"


• Saw a toy dog and said "dog"


• Said "pizza" when he was eating pizza (this one was in response to us saying it)


• Said "peek a boo" when I found him hiding behind the curtains (totally unprompted!)


• Today, we went to Jeff's office for lunch and as we pulled into the parking lot he said "Daddy"

Each of these are little things, but I hope they are starting to add up to some bigger progress. We're working hard to get him some individualized services ASAP. I'm hopeful that it will help speed things up even more.