Applying the Autism Pizza to My Kids

On the sidebar of this blog, I have provided "The Autism Pizza". Using that as a model, I've gone through and determined how Simon and Rachel fit, following the example set by another autism mom. I did this on Facebook in a note, but I think it'll make a good post, so I'm putting them both on here.

First, Simon:
Let's start with the crust -- lack of social interaction. When we first started about 15-16 months ago, Simon had ABSOLUTELY no interest in anyone around him when it came to anything other than sharing affection (Simon has always been quite cuddly when he's in the mood), and that was very limited as to who he would show that side (usually just me, his Dad and his grandmother if he had the opportunity to reacquaint himself with her -- they don't live nearby and we don't see grandparents as often as we would like). Eye contact was VERY limited almost to the point of being nonexistent. And he certainly did NOT know how to follow a point or successfully communicate what he wanted or needed -- it was usually guesswork on the part of everyone around him. Since then, we aren't quite in that spot -- we do get frequent eye contact, but it doesn't last for very long. He does share his interest, mainly when he is requesting something from us. Sometimes we have to force the eye contact -- bring our own eyes into his face so that he has no choice but to look at us, but he will maintain that eye contact for brief periods. He's come to realize that on many occasions, if he wants something, this is necessary and will comply. He still doesn't point, but he is beginning to gesture, the favorite way is actually bring you the item that he is interested in. But he definitely has CRUST.

Now we'll move on to the sauce -- when we started, there was MINIMAL communication. He had maybe 5-10 words that he would use effectively. He didn't sign. Guesswork was how we determined what he wanted from us. However, he began babbling on schedule. It just didn't progress much further. The biggest difference is that he learned to "babble conversationally". What I mean is that he would put the inflections of a conversation within his babble with the changes in tone and pitch. It would sound like he was asking a question, even though there were no actual words. As time has passed, he became EXTREMELY echolailic -- we would say something to him and he would repeat it almost exactly. At first it was a game. Then it became a true way of communication. As I learned how to help him, we started to offer him limited choices and force him to tell us what he wanted. We learned to mix up the order of what we offered since he got into the pattern of repeating the last item. And eventually, he started picking up on communication. He's still not exactly conversational, but he is getting much much better. As for make-believe play, we're not even close. So, yes, we have the sauce.

Finally, the cheese -- stereotypical activities and interests. MOST DEFINITELY. When we started, we were in awe that our child could sit with a toy and play for upwards of 20-30 minutes without needing adult intervention. What a smart child we have, exploring a toy for so long!!!!! Then we started recognizing the repetitive nature of this play. Pushing buttons, mainly, to get the same result OVER and OVER again. He was stimming. For LONG periods of time. This is something that, if left to himself, comes right back. We currently let him stim for periods since it is such a comfort to him, but we try to limit that play. We have removed batteries from many of his toys and try to force him to play with things more appropriately. But we DEFINITELY have some cheese.

So, it's no surprise that his diagnosis is classic autism. He has all the components. Will this diagnosis change over time? I really don't know. I'm not sure if that's really the nature of this condition or if the shape will change as he grows. Either way, we are doing what we can to help him.

Next, Rachel:
Putting this together for Rachel is much harder for me. I'm not sure if it's lingering issues of my own denial or if she is an example of someone who is in the process of changing clinical diagnosis. For her, things have changed so much in the last 10 months. I think I'm going to really have to do this in 2 ways -- where she started for each component and where she is now. But, it was an interesting exercise doing this for Simon and now we'll see what we come up with for Rachel.

All right -- let's start with the crust. Social Interaction. 15-16 months ago, if it wasn't Mommy, she just simply wasn't interested. And even with me, there was little to no eye contact, and almost no smiles or joy. She never pointed or did anything to express what she wanted, unless it was throwing a tantrum. Now we have plenty of eye contact and she will bring me things to share with her. Joint attention is no longer something that's rare -- we get that all the time. However, she isn't exactly what I would call a snuggly child (Simon is more like that), but at the end of the year she started pointing at pictures in a book and labeling them. She still won't follow or initiate a distal point. She still doesn't seek out interactions with her peers (mainly seen with her brothers), but once someone can get her to interact with her, she will keep it going for brief periods of time. Does she have crust? I think I have to say yes, mainly because others have to initiate much of this.

Time for the sauce. This is probably the most difficult of the 3 to determine for her. When our journey began, she had a VERY limited vocabulary, especially for her age. She got to that point (about 20-30 words) and then just didn't progress any further. The intervention started. Shortly before initiating intensive ABA, all of a sudden, something seemed to click. I'm not sure if this was something that came from a newly formed connection that she had made or if it was one of the many interventions she had been exposed to (leaning toward the latter, specifically More Than Words) she started to seeing that "communication" would open a whole new world to her. We started playing "The Opposite Game" (I'd say "Up.....Down.....Up....Down" or similar and she would anticipate) and she'd request specific opposite pairs. Then she learned to make choices. She just began ESY, and when I went to pick her up from school yesterday, after the first day of school, they kept telling me what a pleasure she is to work with and expressing how verbal she is (probably nearing 500 words at this point). The only thing in this sauce definition that she is lacking is she still cannot do imaginative play without having it forced on her (for example, in an ABA task, if she's told to feed a doll a bottle, she'll copy the motion, but there is no comprehension of what they are trying to get her to do). So, for now I'll say she has the sauce. But it's not on very heavy.

Finally, the cheese. This is the easy one for her. She LIVES on routine. If things stray even the slightest, she gets very tense and will say things over and over again until you repeat them in the exact way she needs to hear them. Things need to be predictable. August is going to be interesting for her -- we'll be out of town for a week or so which will probably be easier, but when we're home, she's not going to understand why she's not going on the bus and headed for school. It's fine for a few days, but 2-3 weeks is going to make her VERY uncomfortable. She doesn't "stim" in the same way as her brother, but she will put puzzles together in the same order every time. If I try to break that cycle and hand her a different piece (creating the "wrong" order), she will reach over me and grab the "correct" piece rather than putting in the one I gave her. If I hide the other pieces, depending on her mood, she will often try to walk away or throw a tantrum. Occasionally, she will take the piece if I can convince her, but that takes a significant effort. So, yes, she has plenty of cheese.

So, once again, we have classic autism, which is her official diagnosis. That sauce bothers me though. We'll have to see if her actual diagnosis changes to Aspergers over the next few years or if I'm just not assigning that category of issues correctly. And who knows how else things may change over the years. But, for now, using this model, I agree with the diagnosis she's been assigned.

More Potty Talk....

....I know....kinda crude, but it's a big part of our lives right now.

I'm kinda on the fence of how to tell today's story. In order to tell it accurately and pass along the humor of the story, it means bringing another child's actual name into play (I've allowed my own family members name in here without making any extra anonymity efforts), but it's harder with another person's child. Therefore, out of respect to this child, I'm changing the name.

Rachel quickly learned how to urinate on the toilet. She hates being wet, especially in her underwear (she doesn't even like it in her Pull-Up [nighttime only]). However, BMs caused her a lot of trouble. She just wasn't getting the knack. She couldn't really anticipate the need to get to the toilet until it was too late. And every time, it would be the same thing. Rachel would shout out "Yucky Julio!!!!!". You probably can tell from the previous paragraph that "Julio" is another young child who was in Rachel's class at school this past year. We don't know WHY she started calling her BMs "Julio". I asked her teacher in an email about it -- she actually seemed to have a slight crush on him. So, we don't understand why. But she's consistent and she's communicating, so we go out of our way to call this "poopies", but don't criticize her for her choice of words -- just try to redirect it. Hopefully, soon she'll get the point and will call it something more appropriate.

But, anyway, a couple of nights ago, she released some BM into the toilet. I don't know if she truly intended this to happen or if it was by accident, but it seemed to create that connection that was lacking. Since then, she only has accidents early in the morning. And today, she told me she needed to go "Julio". Unfortunately, I was in the middle of changing Simon's diaper at the time and I just couldn't leave. By the time I had finished, it was too late and she had the accident. But we definitely have made great strides.

Finally, I wanted to include a short video of Rachel that we took tonight. One of the bedtime books was Brown Bear Brown Bear, What Do You See? by Eric Carle, which is definitely a favorite. When we went to visit family during the holidays, I was reading this book to her, and she started pointing to the pictures at the end of the book and reciting the text. This was the first time I had ever seen her appropriately point at something, to correctly direct my attention to another object. Ever since then, I've been amazed by this behavior in her. I finally recorded it to share with others.

Summer is on....

.....and we got through the day. Daniel started his camp today which allowed me to spend some time with Rachel and Simon (without their older brother). As strange as that sounds (since he's the older one), that's something that NEVER seems to happen. During the school year, Daniel was in school LESS than either of them since he was only in a half-day program and their programs were 5 hrs/day for Simon (except Mondays) and 6 hrs/day for Rachel (plus bustime for both). And Simon gets me to himself for about 3 hours/day next week.

This is just really nice. I can plan activities for Rachel and Simon and not worry about what Daniel is up to. Our local public library has a couple of play rooms and we are planning on going there tomorrow morning, and we'll be doing a make-up gym class later in the week. These are 2 activities that is just hard to do when it's just me if I have all 3 kids. The play room in the library (at least this particular one) is a bit juvenile for Daniel but is at Rachel and Simon's level. And Daniel spends all of the gym class trying to convince me that he can come in to "help" (if you have or know of an over-enthusiastic 5 year old, you understand WHY I put that word in quotation marks).

The week-and-a-half that Daniel had me to himself was really nice. There are so many things he wants to do that I can't help him with because of Rachel and Simon, both because of their age and the quirks that exist related to autism. But he's what we refer to as "high demand". Not a bad kid -- not at all or in any way. But he is exhausting all by himself. It's nice that he's back with kids his own age doing activities that are both age appropriate and FUN!!!!!!

And now I can devote my attention to Rachel and Simon.

I think I remember now.....

......why I fell apart last year. On June 17 I believe. I ended up spending a fair amount of time on the phone with our family coordinator with Infants and Toddlers that morning after a small but significant breakdown. That's when the suggestion for camps came up for Daniel, and why I made sure to sign him up for camps starting as soon as they began. I was hoping that taking that preventative step would be wise. I'm sure that it was the wise course of action, but it hasn't prevented the problem. And I STILL don't have the 3 of them home full time yet.....

I really just need to be able to take them somewhere and not be afraid of them running off where I feel I can keep something resembling control. I almost went to a playground today after Simon came home from school, but the constant runs to the bathroom made that a difficult proposition -- I may be able to ask someone to keep an eye on Daniel, but I can't ask someone to do that for Simon. And taking Rachel to the bathroom is a bit of an ordeal -- it takes time to get her on the toilet and, like all children recently trained, you have a VERY narrow window of opportunity. I had to take her to the bathroom at least 10 times between lunch and dinner, and every time, it felt like we barely made it. And there were 2 additional times that she failed to anticipate in time. I'm THRILLED that she's trained!!!! BELIEVE ME!!!!!!!! But it does have to be considered (along with everything else) before leaving the house.

We did manage to go out for a while this morning before Simon came home -- took a run to the grocery store, PetSmart and Borders. And Rachel and Daniel did enjoy approximately 2/3 of story time at the book store before we had to leave to make sure we were home in time for Simon's bus. Rachel didn't exactly pay attention to the stories that were read -- instead, she found the shelves of board books and pulled them down one at a time, brought them over to me and then read them to herself (quite loudly). It was both amusing and mortifying. But at least I didn't have to take her out of the store kicking and screaming or purchase several books that we already own because she destroyed them in the short time we were in the store -- both things have happened in the past.

Today was not all bad -- Rachel found great pleasure in demonstrating her new spelling skills -- she kept shouting "R-A-C-H-E-L!!!!!" Finally, she allowed me to turn on the camera and record it (and consequently put it on my Facebook page). She had me show her that video OVER and OVER and OVER again throughout the rest of the afternoon.

Tomorrow is Friday. Simon will be finishing school. It will be Daniel's last day home before his camps begin where I'm on my own. Over the weekend, Kevin will be here and I'll be able to get the breaks that seem so elusive during the week. I was just really hoping today would have been better than yesterday. I didn't get that wish.

So Frustrated

I probably shouldn't be writing a post tonight -- I've just spent much of the day in such a foul mood. But then again, maybe that means I should be writing a post tonight given what this blog has become.

Today was Rachel's last day of school. Daniel has been home for nearly 2 weeks. Simon has school until Friday, but his days are short. But the insanity has definitely begun. Daniel has cabin fever because now we can't spend the day out doing special activities. Rachel will be home all day tomorrow and Friday. Simon will be home before noon during these 3 days. I'm not sure what that's going to do to our existing routine.

I'm not sure how I'm going to accommodate Domino's morning walk anymore -- until now I've been mostly walking her after the twins head to school but giving her a short walk between Simon and Daniel leaving, just around the block with Daniel playing Wii and me leaving the door open -- if he shouts, I'm always in ear-shot, but he's never needed me to be around during this time other than to ask if he can play another short game. Since Daniel's finished school, he's been coming with me for Domino's walks. But I can't do that with Rachel or Simon, much less both of them. I tried to put just Simon in the wagon and taking Domino for her walk a couple of times after Domino came home -- that was, I'm sure, a hilarious sight -- me dragging the wagon behind me trying to keep all 4 wheels on the ground while in front of me is a medium sized black dog dragging me. Normally, Domino takes a bit of a firm hand during our walks, but with the wagon that statement is even more so because I completely lose control of the pace of the walk. Additionally, by about 1/3 of the way through the walk I usually have a bag of dog waste that I'm carrying which makes pulling the wagon extremely difficult and uncomfortable for me to hold the leash. And this isn't even going into the scenarios of when we come across another dog on our journey. So, between now and when I get up in the morning, I need to come up with a strategy, that I will need to employ for the next 2.5 weeks until everyone is back in camp/school.

There's the next problem -- surviving the next few weeks. Daniel is about to go back into a routine next week (thank goodness). His camps begin on Monday and continue for 6 weeks (between the 3 programs), and I think he's looking forward to it at least as much as I am. I'll have both Rachel and Simon next week full time. Then the following week, Rachel will begin ESY for the mornings and I'll just have Simon. I'll be picking Rachel up from school (in a location I'm still not sure of -- I know what school she's in, but have NO CLUE where it's located) for that first week because I have to pick up Daniel 1/2 hour after her program ends -- I don't think I can be home in time to receive her bus if she comes home on the bus. Then the following week, Simon begins ESY and he and Rachel begin their camp(s). I'm still trying to work out the details about everyone's schedule and change around the order of Daniel's camps.

I think once we get to July 6, we're in good shape. But that's still 2.5 weeks away and after today, I'm already going a bit insane. Hopefully, I can chalk today up to a lack of sleep (last night was, we'll just say a REALLY bad night) and poor and unpredictable weather. If that's the case, then I'm worrying about nothing. But that's rarely the case.

Oh, well. I always felt I thrived on insanity. That's been doubly tested over the last 15 months or so. Now that I KNOW what "insanity" is, I'm not really sure that's true. But this is my life. There's no such thing as "calm" when you're a parent. There are always people and things that cause worry and concern -- but there are also always people and things that provide joy and pride. When things get hard, I need to search for those joyful things rather than spending my sparing energy focusing on the worries. I always worry about Simon (in particular) and Rachel (to a lesser degree) but they are still wonderful kids and I know they are growing. 2.5 weeks off from school will do them both good.

A Post About Daniel

Things are a bit crazy lately. Daniel's been taking so much of my time keeping promises that I haven't had time to keep, or have been afraid to do with his brother and sister around. The biggest one was bowling. Daniel LOVES bowling, thanks to the Wii. Then he went DuckPin Bowling for a birthday party at the beginning of the year, and ever since then he's been talking about going back there. But can you imagine taking Simon (especially) to a bowling alley, with all that noise? Or keeping Rachel from running down the lanes and trying to knock down all the pins with her hands rather than the ball? But since he's done with school and the twins aren't, this was the perfect week to do that. So, on Tuesday, I made it a MOMS Club activity and also invited some of the boys from his preschool. Overall, we had 10 kids (age 18mo to 5.5 yrs) and they all seemed to have a good time, especially when we ended the activity at a nearby McDonalds with a play area. So fun was had by all, and we were home in plenty of time for Simon's bus.

And on Wednesday, Daniel finally got a chance to take the Metro. He was born in the DC area, but never went on the Metro before. Again, this is something I just can't figure out how I'd do with Rachel and Simon. They're nearly 3.5 years old -- I hate to keep them in a stroller for that type of outing, but I really don't know if I can contain them any other way. We didn't do anything all that fancy -- Kevin's office is only a few blocks from a Metro station so we took the train to his office, he walked around a bit and Kevin was able to show him off (he hasn't been there in over 2 years) and go to lunch before we had to head back to the train and headed back home. One would think we were heading to Disney World -- he was just so excited. By the halfway point of the return trip, he was starting to get bored with the tunnels, but then we were back in the open and his fascination returned. It's amazing how, sometimes, the simplest thing, can make a 5-year old boy so happy.

So, this week, Daniel has gotten a lot of my positive energy. Next week, life will go back to normal and he will have to share my attention. He won't be happy about it, but his camps will begin soon after. And hopefully we'll be able to find some activities that will suit all 3 of them, specifically park playdates.

But it's nice to be able to focus on one child for a few days. I just need to be able to figure out how to make things like that work for the other 2.

My Blogiversary

Another blog I read had a "Blogiversary" to celebrate it's one-year anniversary, and I thought that idea was kind of neat, so I'm doing the same. Yes, it's been a year since I've started this blog. And it's been a crazy year. I don't even remember what I intended this blog to be when I started it -- I only know it's turned into something completely different. And my life is completely different then it was one year ago. And, as I say in the description of this blog, that's not necessarily a bad thing. There is so much that I've learned. There's so much that my FAMILY has learned. There's so much that has changed. It's just a LOT!!!!!

Writing this blog has been amazing for me. I never was able to find such a release in writing. I was never any good at it (still not, but that's not the point) and loathed having to write anything for school, to the point where I would never even consider writing anything on my own. But it's amazing how much I've been able to put into these posts and, looking back on them, really use these posts to organize my own thoughts.

So, for those of you who have been reading, thank you, and please continue to follow my journey. For those of you who have stumbled on this blog, welcome!

Double Trouble

I don't know if this is simply peer pressure or recognizing the positive feedback Rachel's been receiving or if there's more going on here....

The last day or two, Simon has been asking about going "potty". We aren't going to refuse the request (you never know, after all), but right now I'm trying to figure out if he is really ready or if this is simply him recognizing the positive reactions his sister is receiving from me and his Dad and he wants to share in that glory. In general, I would tend towards he's wanting to share in the positive feedback for his sister, and I don't feel he's really ready, but there's a few things that makes me wonder given this new development.

His "stimming" behaviors have recently turned very physically inward. It's making us a bit crazy trying to stop the behavior -- I mean, historically his stimming behavior is focused on a toy (or what SHOULD be a toy), but we can take it away when the play becomes destructive. When the object of this behavior is himself, how can you stop it? But is this personal obsession an indication that he's ready for something more?

The bottom line is, at the moment, I feel that if we start trying to potty-train Simon, we're setting him up for failure. I sent an email to his school asking him if they are noticing anything there. After all, if they are seeing it too, then perhaps we should consider a plan for training him as well. But I suspect this is something that he's only doing at home since more often than not, he asks to go "potty" when Rachel asks to be taken to the bathroom. But who knows....maybe we'll be a diaperless household before too long.....

The Moments....

.....they just keep coming. And if I don't put them down somewhere, I'm likely to forget them all.

There are 2 stories about Rachel and/or Simon for tonight. The first is a continuation of their bedtime ritual. The behaviors have been "morphing" a bit over the last few weeks. And now, after a lot of experimentation, I think we found our new series of nightly events. Some of it I love, other parts just leave me floored.

For a while, Simon refused to give Kevin a hug because he was determined to keep Rachel from making changes to what he was comfortable with. But Rachel had learned to get around him, so now he will jump into Kevin's arms to say goodnight. Then he'll climb into Rachel's bed for songs. And Rachel will have climbed into Simon's bed. All right, confused yet? Well, after I finish singing the songs, they both climb out of the other's beds, and climb into their OWN bed. Then they innocently go through the final goodnights with me and when I leave the room, Rachel starts her conversation with Simon, and Simon jumps out of bed and tries to get into some kind of trouble -- usually climbing into the forbidden chair and he has now discovered he can pull the cover off of the vent so it's now a new favorite troublesome activity. Rachel falls asleep first, and Simon will either fall asleep in her bed, or on the floor. Before going to bed myself, I move him back to his own bed, and he may or may not still be there when Kevin leaves for work in the morning.

The second thing I wanted to talk about is Rachel and her potty training. About 8 months ago, I remember sitting in parent group with MCITP discussing potty training children on the spectrum and descriptions of how difficult it can be. Let me just say, this is so NOT the case for Rachel. It's been 2 weeks. She spends all of her days in underwear, from the time she wakes up until about 30 minutes before she goes to sleep at night. And when she wakes up, for the last 2 nights, her Pull-Up has been DRY. She's averaging 1-2 accidents daily, and successfully going to potty about 10 times daily. And, even from the reports I'm getting from school, it's been EASY. A big part of this is that SHE is the one who initiated potty training, rather than someone else putting expectations on her. I am so unbelievably proud of that child, words just can't describe it.

Hopefully, I won't hold Simon to the same expectation. Right now, he's no where NEAR ready to begin potty training. But when the time comes, I hope he is as successful. But everyone is an individual and Simon will train in his own way and in his own time.