Sunday, December 19, 2010


This morning, we packed up the kids and headed to the local shopping mall for the annual Santa visit. Like almost every family I know, this is something we do every year. Daniel strongly believes in Santa and had already sent a letter to The North Pole detailing the many gifts that he would like to receive this year. And, even though they don't see things that way, Rachel and Simon have become familiar with the concept of "Santa Claus" even if they don't seem to realize that they can request specific gifts, between television, school, their older brother, etc.

But for the last 3 years, we have brought these 3 kids (together) to Lakeforest Mall in Gaithersburg, MD to see Santa Clause. We've also been purchasing the "USB thumbdrive" with the pictures every year, regardless of how they turn out. In our minds, this is a good way to chronicle the experience and any improvements/regressions for this traditional experience. The first year it went pretty much as expected. We had no clue that the twins were on the spectrum at that point and, even though they weren't cooperative, they were less than 2 years old and they were crabby and not cooperative. Also, we were beginning our experiments of walking through public places without strollers as early practice for our planned vacation to Walt Disney World. We didn't think anything of their behavior. We assumed they were upset because we weren't allowing them to run all over the place. And we felt that it was relatively normal for kids to be apprehensive at that age.

Last year, it was a minor nightmare, and this time we knew what we were dealing with so we were mentally prepared for problems. We were hoping for (but not expecting) better this year. But this is one of the few things that we do pretty much on a whim, with absolutely no preparation (of the kids that is). We don't want to bring it up in case we change our minds if the line is too long or their behavior has us turn around to go home. If we were to say where we were going and begin the work in preparing them, that would just lead to disappointment for Daniel if for no one else.

Just because we don't prepare the kids for the experience doesn't mean that we don't get things set up for ourselves. Last night, we went online to learn when (1) the mall was opening for shoppers and (2) the hours that Santa would be in his "workshop". We were happy to learn that the mall was opening at 9:00 and that Santa would begin seeing kids at 11. That gave us time to get to the mall, walk around, perhaps do a little shopping (and get Rachel into the bathroom before dressing her in tights [MUCH harder to do "potty runs" in tights]) and still be on line early enough to have as short of a wait as possible. We arrived at the mall around 10:15 or so and made a stop or two on our way to the center of the mall where Santa's Workshop had been set up. There was already a small queue (only about 4 families). Kevin and I looked at each other and he took Rachel and got on line (at this point it's about 10:30). I took Daniel into a store to get him a nice sweater for the mandatory pictures. Simon was already dressed and Rachel would be changed when I brought her to the bathroom after returning to the line. Simon didn't want to stand around the store, but he was all right. We found a nice sweater for Daniel, made the purchase, and joined Kevin and Rachel on line. Time is ticking away.

It's time to take Rachel to the bathroom. Kevin has already pulled out his iPhone and is playing a video for Simon which is keeping him entertained. Daniel is just excited and is behaving reasonably well. Rachel and I head off to the bathroom and we get her dressed and ready. Then we get back there and she heads straight to the little boy in front of us in line and starts playing with him. It's now closing in on 10:45 so we still have 15 minutes to wait. But the time is passing with little to no fuss. Between the 2 iPhones, the kids in front and behind us, singing songs, and just in general being silly, we pass the time and we get to go into the workshop. And we only have a short wait since there are only a few families ahead of us.

When it's almost our turn to see Santa, I inform the woman working there that both of the twins are on the spectrum. I'm hoping that perhaps they have some tricks to help them to minimize the trauma that we experienced last year. Fortunately for us, her own son is also on the spectrum so she understood exactly what our concerns were and she had us come in and allowed Rachel and Simon to acclimate to Santa a bit more slowly. It only took a few minutes and then Rachel climbed into Santa's lap!!!!! Once that happened, we got moving and we got 4 decent pictures taken. Daniel was able to tell Santa the one thing that he had forgotten to include in his letter that he wanted for Christmas (a scarf) and we went off to sit on the side while Kevin paid for and received our USB key. All 3 kids were given lollipops for doing such a good job and Daniel and Rachel were both anxious to have theirs. When we offered it to Simon, he didn't want it and just went over to the top of the steps to play with the mulch. But he did such a good job with Santa, we weren't going to worry about it. He needed to do something that made him comfortable.

So this was our most successful Santa visit to date. Hopefully next year will continue where this year left off, but perhaps it won't. Either way, we will continue to do this. They deserve to visit Santa Claus every year, just like all the other kids. And I get to keep the memories (the good and the bad).

Thursday, December 16, 2010

We're Thinking About Trying Again

Does anyone remember us taking this family to see the Laurie Berkner Band in Baltimore this spring? We spent WEEKS prepping Simon for the experience (and brought Rachel in that process as well). The experience went better than the previous trip to a show (of sorts), but it was still probably considered a dismal failure.

Well, the Laurie Berkner Band will be performing in Washington, DC in early March, and we are actually considering trying this again. I learned about this performance a few weeks ago, but didn't say anything. I wanted to try again. I know that Simon should enjoy it and our fear of his misery shouldn't be why we avoid the situation -- we need to work through it. But that fear is very real, and truth be told, I don't want to set everything up for that kind of failure all over again. And (I have to admit), I like the Laurie Berkner Band, almost as much as my kids do.

Anyway, I don't think I said anything to Kevin about this. I knew what he was going to say (or think) about it. He had to come to the rescue in Baltimore. The tickets aren't PARTICULARLY expensive, but when considering we'd be purchasing 5 of them, the cost does add up. And if we would have to spend much of the performance outside the auditorium, is it worth the financial cost as well as the emotional investment in getting Simon ready for the show? Then we watched Rachel, and more so Simon, open their Hanukkah presents of Laurie Berkner Band DVDs (they [officially] each got one).

That was the favorite present for Simon. He saw the DVD and didn't really think anything of it, until he realized that it was, in his words, "LAURIE!!!!!!!!!". They want to watch it every night. They can't get enough of it. They simply LOVE the music and if any concert would be successful for Simon, it would be a LBB concert.

We still haven't decided whether we're going to try to get the tickets. IF we do decide to try again, I'll be taking the same steps I took before -- I'll be reaching out to that "contact" at Two Tomatoes Records, LLC that I made last spring. I'll try to get the backstage passes again as well as anything else she can provide for me. I also sent a note to Simon's school this morning to ask if they have any suggestions on how to prepare him for this. But they don't see the same things I do. He goes to performances with school and doesn't react poorly like he does with his family, so I'm not sure what they're going to say. But it's worth asking them.

It sounds like I'm planning on trying to get these tickets. I'm not making this decision until the start of the year. There's just too many things happening right now that I can't afford to make that kind of decision and not immediately start working with Simon, and right now there just isn't time.

But, as the title of this post says, we're thinking of trying this again.....we must be NUTS!!!!!!!

Wednesday, December 15, 2010

A couple of unrelated things

I'm at a loss right now -- I really want to "blog", but I'm really not sure what to say. I've kind of been running on auto-pilot for a while now. There are, however, a couple of things worth sharing....

First, Rachel is being incorporated into a neurotypical pre-K classroom in an effort to (1) introduce social opportunities and (2) begin her transition to being mainstreamed when she begins kindergarten in a year and a half. The plan is to go slowly, increasing the time she's in their classroom gradually to get her used to being there. She goes with her paraeducator so she has that familiarity and there is no added stress on the pre-K teacher since she has someone specifically watching out for her. She easily incorporated herself into the classroom for 15 minutes/day. But they've made some accommodations to help ease this transition, namely allowing her to choose her own activities.

Instead of increasing the time in the classroom to 30 minutes/day, they are assigning her to an activity. No one was sure how she would react being assigned to (specifically) working with the blocks. She doesn't like working with blocks. She has no interest. When she has to use them for her trials, she will do what's expected, but will get through the task quickly and then she can work with something she prefers. Much to everyone's surprise, there has been no trouble getting her to accept this new requirement placed upon her. She's LISTENING to where she's supposed to go, playing appropriately, and not fighting either her teachers or the activity itself. LET'S HEAR IT FOR PROGRESS!!!!!!!

Second, we had an interesting experience yesterday. An "outsider" came to our house for a few hours and got a glimpse into our lives. That person is a friend of Daniel's. Yes, here we are, more than 3 months into the school year, and I finally pulled myself together enough for him to have a playdate at the house. He and his friend had a great time. They played Legos in Daniel's room, then they went downstairs to play, and then after Kevin came home from work, the boys went upstairs to play on the Wii. The only problem was that Daniel's friend was very uncomfortable around Domino -- every time she approached him, just to sniff his hand, he would run away, which of course led to Domino putting on the chase. Eventually, things settled down and it really did seem that the boys did have a good time.

But that led to a couple of changes in our normal routine. And, being so routine-driven around here, we weren't sure what to expect. But Simon was willing to accept someone coming into the house, and he played his normal games when we arrived home. Rachel accepted that her plaything (aka Daniel) was otherwise occupied when we went downstairs to play. It also led to a slightly delayed dinner (Daniel's friend wasn't picked up until nearly 6 and we usually sit down for dinner closer to 5:45). That was a slight problem -- the twins were both getting hungry and impatient. But again, overall, it went smoothly.

So, we actually did something NORMAL. And we did it right!!! Daniel had fun playing with his friend (and from what I understand, his friend had fun too). Rachel and Simon didn't implode because of changes to their "routine". I got to relax a bit because the older boys pretty much took care of themselves and it wasn't necessary for me to "entertain" them.

Where will the next "normal" thing come from? We're seeing them more and more often.

Saturday, December 11, 2010

So Tired.....

Sleep is something that is always under-appreciated. That is, until its absence. Lack of sleep pays a toll. It affects your energy. It affects your ability to function. It affects your alertness. It affects your attitude. It affects, well, everything.

This past week, sleep has been a valued commodity, mainly due to its absence. Both of the boys have a cough and, even though it doesn't seem to affect Daniel's ability to sleep, it definitely affects Simon's. And, consequently, it affects mine. It seems that if anyone is to wake up at any time for any reason, then I'm awake too. The difference is, often the person who initially woke up will be back to sleep shortly (within 15 minutes). It takes me almost an hour. I spend time listening to make sure they're still asleep. I'll wonder who's bed the twins are in. I'll wonder if I'll be hearing the gate crashing down outside the twins' room and having Simon pounce on me at any moment. Or maybe I'll just be thinking that I need to go to the bathroom. But once the kids (including husband) wakes me up, I'm up for, probably on average, at least an hour.

The unfortunate part of this is that every once in a while, it takes it's toll. My patience disappears. I become very short-tempered. I become more likely to just take the "easy way out". And today, I don't think I'm the only one who can say that. Rachel went to gymnastics and, about 1/3 of the way through the class she had a complete meltdown for no reason at all. According to Kevin (who was the parent accompanying her since I had taken Simon to music class at the same time), she just sat down and started screaming. It had progressed to the point where she had to leave the gym for a while. That hasn't happened in a VERY long time. She loves gymnastics and, even though she may not follow directions as well as the teachers would like, she rarely causes problems for the other kids in the class (that wasn't the case when we tried her in dance which is one of the reasons we reverted back to the gymnastics [schedule issues notwithstanding]). But today I think that she as well as her teachers and classmates were happy when 12:30 came around and it was time for her to head home.

Simon didn't do much better, but in a very different way. I had taken him to his music class where, although he doesn't exactly follow directions, can do things independently. Not today. He refused to do whatever the teacher was asking of him. He would go up to the front of the room to get an instrument (or put it away), but not come back to his piano when he was done -- he would either sit where they do "circle time" or he'd stop at someone else's piano and try to take their books or instruments, so I was chasing him around the room for much of the class. But unlike his sister, he didn't have an actual "meltdown". He was simply disruptive and a royal pain to everyone he was around. The meltdowns happened later.

On an unrelated note, Simon was singing earlier today....."Jingle Bells, Jingle Bells, Jingle Bells away....." -- sometimes cuteness makes up for so much.

But, needless to say, we're all tired around here today. The twins were asleep practically from the moment we said goodnight and I think Daniel fell asleep quickly too (he usually does). So, hopefully we'll make it an early night. And even more so, hopefully everyone will get a good night's sleep tonight. Lord knows we can use it!!!!!

Wednesday, December 8, 2010

Why Do I Blog?

I've been thinking a lot lately about why I do some of the things that I do. Why did I start this blog? Why do I write the things I do?

When I first learned that the twins were on the spectrum, I went through the series of emotions that I would assume most parents would experience. I needed information. I spoke with our pediatrician and she recommended that I read Autism's False Prophets by Paul Offitt explaining that this book may provide me with some answers about the validity of (for lack of a better term) several urban legends behind the cause of autism (including [among others] vaccine theories). After reading this book, I realized that it wasn't enough. I needed more information. So, I went to the internet. And I was appalled by what I was finding. So-called "Autism News" sites were basically bullying people into believing disproven theories. I became frustrated. I became angry.

So, about 2-3 months after learning the twins were on the spectrum, I started this blog. I was going to talk about what I learned and the decisions that were made for my family, and why. And that's how I started. Then life happened.

I had a bad day. Perhaps it was a bad week. Or maybe the weight of everything that had been happening the previous few months had paid its toll. Whatever it was, I was feeling overwhelmed. So I wrote a post "from the heart". It was just venting a gripe or two. I'm not really sure what I said. But I do remember how I felt after I clicked the "Publish Post" button. For the first time in weeks, I felt like I could breathe again. The weight was lifted from my shoulders. Not for very long. Not long at all. But for a little while. Just long enough to catch my breath and get ready to face another day.

At that moment, this blog changed. It became a venting ground. It became a place to say whatever needed to be said. It became a place to organize my thoughts. I call it a "publicly available online journal". I started pouring all of my frustrations into it. And then, when I click the "Publish Post" button, I get the opportunity to start fresh. More often then not, the problems haven't gone away. But perhaps I've had the chance to organize my thoughts a bit more. Or maybe I've had the chance to say things that I really can't say anywhere else.

Will this blog change again? Perhaps. Perhaps not. But I do this for me. I share my experiences. I share my fears and my frustrations. I share myself.

THAT'S why I do this.

Sunday, December 5, 2010

Happy Hanukkah!

Well, it's December, and that means the holidays have started. We're an interfaith family, so we celebrate both Hanukkah and Christmas. Translation, on a year where Hanukkah starts early (like this year), it's a scramble of presents, traditions and insanity.

Yes, 4 days after spending time with extended family, the holiday began. Wednesday night was the first night of Hanukkah. Our Hanukkah traditions are still a work in progress. Daniel says the prayers with me, repeating each word after me in hebrew and me giving a very basic translation of each prayer. In the past, he's also lit all the candles (except the Shamash [the candle usually in the middle slightly raised in comparison to the others that is lit prior to the other candles and before the prayers are recited] since that requires striking a match or similar). But this year, we started making a change. On the 4th night (yesterday), Rachel lit the first of the daily candles and then handed the Shamash over to Daniel. Tonight (the 5th night), Simon did the same thing. Hopefully, in years to come, we can simply have them take turns lighting the candles -- Daniel will do it one night, Rachel the next, Simon the next, etc.

Yes, Rachel and Simon are starting to get more involved in the holiday festivities. For the first time, we are watching them thoroughly enjoy opening their gifts. In the past, every time they were presented with a gift, they needed significant help in opening the gifts and then they didn't seem to know what to do with the gift once they were opened. This year, they may ask for a little help to get things started, but they are looking like kids -- they are excited to tear off the paper and see what's inside. And, in general, their faces have been lighting up when they see the "surprise" waiting in the package. So far, we've seen this with gifts including Barbie dolls, DVD, hats/gloves, even chocolate money (which I consider a "dud" gift).

Hopefully, for future years I can be a bit more organized and we can have a "grab bag" of gifts for each kid and they will select one every night. Unfortunately, I'm NOT that organized right now and I'm scrambling to get 3 gifts ready every night (one per child). This way I can make sure that they are getting "similar" gifts and one of them isn't getting a lackluster present while another is hitting a "gold mine" (this will likely eventually happen with the grab bag model).

So, more than halfway through Hanukkah, we see a successful holiday. Christmas is coming soon and there will be some new things there as well, and the twins' birthday isn't much later. But their love of receiving and opening presents helps them enjoy what's to come. It's so nice that they are enjoying this time of year, just like so many of the neurotypical peers. "Normal" is such a novel concept to us when it comes to Rachel and Simon. We have to grasp each thing that appears that way because we never know how long we may have to wait until the next one.

Monday, November 29, 2010

Schedules and Routines

I know that all children thrive on schedules and routines and one of the first thing parents do when a baby is born is start working on establishing a schedule and a routine. But when does that need become crucial? abnormal? absolute? And when is that a problem?

We have several routines around here. We have a morning routine (with modifications for the weekends when Kevin is home versus when he's not). We have a dinner-time routine. We have a bedtime routine. We even have a pick-the-kids-up-from-school routine. In a "normal" household consisting of 2 parents, 3 children, and a dog, I would expect something similar. But we are different. Our "routines" are absolute. There can be little-to-no deviations. Even the slightest things can be catastrophic. And when I say the "slightest thing", I mean the STUPIDEST thing.

The best example of this is our "Getting the Big Boys From School Routine". A typical afternoon jaunt (on a driving day [not worth talking about walking right now because we rarely do that as it's getting colder]) goes like this -- after Simon gets home from school (most days [don't ask how we distinguish Mondays from the rest of the week -- that would take another post]), he goes straight into the car and we head down the hill to pick up Daniel and a neighbor, also in kindergarten. We have to park the car in the SAME spot every day. We have to walk the same path to get to the kindergarten door, including walking AROUND a particular tree. We have to jump across the driveway for the elementary school. And we must avoid ALL marked crosswalks (the closest I can come is I can walk the outer boundary line and Simon will hold my hand on the outside of the crosswalk and will scream as we cross the street -- trying to explain to the 4th grader patrols that my 3 year old cannot walk in the crosswalk is finally starting to become unnecessary). I have to make sure Daniel gets in the car before Simon and the back door has to be closed before Simon will climb into his seat. Simon then has to be given a book to "read" before I strap him in, and then I have to walk around the car to be sure that the other boy is properly strapped in. Then I drop off our neighbor and bring my kids home and another routine begins.

Notice the detail in that last paragraph. Nothing can deviate. It MUST be that way. If we do change anything -- if I miss our preferred parking spot or I decide to have a too-lengthy conversation with another Mom picking up her kids, we are facing a meltdown. And dealing with Simon and a meltdown is definitely something to be avoided. He's not a small child. He's not a light child. With Rachel, I can pick her up, swing her over my shoulder and do what I have to do, should it come to that. Even when she's fighting it, I can usually manage it with minimal difficulty. For Simon, just lifting him is a challenge under ideal conditions. During a tantrum, it's nearly impossible. And if I was to do it in public, people would probably consider calling Protective Services against me. It's just easier to avoid that situation.

Simon is not the only one who needs routine. Rachel is, in some ways, even worse. With Simon, for most things, he will just freeze where he is until you do what is expected. Rachel, when she "loses it", getting her back takes a very long time and you have to let things run their course. But many of her "routines" are more comical and/or useful. She has to come running if you make certain sounds. She can't go to sleep until she's taken that last "potty" run, even if she just went to the bathroom 3 minutes before. And nothing requires that level of detail as I specified in the routine above.

Now, Daniel always thrived on routine, and he's clearly NOT autistic. But, to be brutally honest, at this point I can't remember, when he was 2 months shy of 4 years old, if routines were changed or not followed at all how he would react. He wouldn't throw a tantrum, but he also had a much larger vocabulary and was much more effective at expressing himself than his brother or sister. But did it throw him as badly as it does his ASD siblings? I honestly just can't remember.

Another one of those times that I have to wonder what is autism and what is just having 3 year olds......

Tuesday, November 16, 2010

Decision's Made

Second meeting is done. We're done for now. Both of my kids are staying put.

Yup.....after all my waffling about what I should do for Simon, I decided not to fight this. Something is happening with him right now. Something is trying to break out. I don't know what. But it's there -- just below the surface and it's struggling to break free. We have already made one change -- we started these music classes on Saturday mornings. We don't want to make any other changes right now. In a bit, we'll see what this is that's coming out of Simon. Is it a full breakthrough or just a small step? But we need to give this a chance.

It was nice to sit there and listen to all that Simon's accomplished since January 12 when he started this program. He's become much more receptive to group activities (which was already one of his strengths). He's starting to show interest in general play activities. I was able to talk about some of my specific concerns, including his aversions to noise and his unwillingness to try new things (used the music class as an example). But the truth is, 6 months ago we wouldn't have made it through the class -- it would have been a bad experience for him the first few times he went and then, perhaps, he'd be ready to accept it. Now, it was just the first 10 minutes. I expect problems when we go on Saturday, but now we're building on a success.

One of his "objectives" though was something I had to ask about -- it read that Simon would sit on the toilet. I didn't expect them to have a fully "potty training" objective -- they want to see success and that objective is much more difficult to happen then others. But I saw it there and asked about it -- have they been successful at getting him to "sit"on the toilet? They told me that he will, but he's not happy about it. They can usually get him for a 10 count (speed varies depending on his cooperativeness) and then he can get up. But they aren't trying to "train" him right now -- just that early step. Funnily enough, on my drive home, his teacher calls me to tell me that he "pooped" in the toilet!!!! When I asked if she felt he was ready for training, she definitely implied that this should still be considered almost a "fluke", but a success nonetheless. So, perhaps I'll be able to stop ordering diapers soon......or perhaps not.....

Was the right decision made? For today, yes. For next week or next month, well, we'll worry about it next week or next month. I always have the option of calling for another meeting and bringing this up for discussion again. I just need to see where this is going right now before chancing such a big change as his placement. Hopefully, it is the right thing and we won't have to worry about this until next year.

Sunday, November 14, 2010

Simon's Activity

I guess this isn't a fully true statement, but I like it anyway. Simon has started piano lessons.

Following an email from a friend from the MOMS Club I'm involved with, I contacted a school called The Academy of Fine Arts (about 8 miles from my house, per GPS). They have a class called "Music and Me". Given the books that they use for the class, it's not just this one location, but it's the spot we found. It's designed (it seems) to be the first stage in a long sequence of beginning piano lessons. The class started in September, but kids join in throughout the semester, and it goes until the end of January. We've been looking for a good class, ideally with neurotypical kids, for Simon to join. In the past, he's taken gymnastics with his sister (but he's never enjoyed it) and this term we were giving him a break from that. But he needs SOMETHING. We've been looking at music classes. But all the ones I can find meet in the mornings during the week, when he's in school. That won't work for us.

But this one meets on Saturday mornings, at the same time as Rachel's gymnastics class. Daniel's done with baseball until mid-spring so Kevin is free to take one twin to an activity while I take the other to a second. So, we decided to try it out.

I took Simon to the music class and Kevin took Rachel to gymnastics. Because we were unfamiliar with the music school, we chose to take Daniel to Rachel's gym, which meant that Kevin had 2 kids and I had one. Translation -- Kevin took my car (with 3 car seats permanently installed across the middle row) and we transferred the "extra" car seat to Kevin's car and I took Simon. Simon almost NEVER travels in "the car" -- he always comes with me in "the truck". He DIDN'T want to get into that car. I won the fight and managed to get him strapped in. His hands went over his ears and he screamed. But the screaming was different. It was interspersed with singing (in an odd way, but I can't really describe how). But the hands remained covering his ears.

Getting there was a bit of challenge -- the school is kind of hidden away. That didn't improve Simon's mood at all. But we did arrive with a few minutes to spare. The screaming started again as we get out of the car and start walking into the building. People are staring, and I'm ignoring them. I'm used to this by now. This is a music class and I'm convinced that Simon will enjoy it if I can just get him in there and force him to hear what's happening around him. I introduce myself to the teacher while holding Simon and explain that I know he'll be fine once he allows himself to experience the class. We walk into the classroom and I try to find us a seat (at a piano) towards the back of the room (to minimize the distrubance), but the two pianos were already occupied. So, we sat at one piano closer to the front. I explained to the mother sitting next to me (at the piano furthest towards the back) that Simon was autistic and this was a new experience -- I honestly believed that once the class got going, he'd settle down and shouldn't be a disturbance. Fortunately, as soon as I mentioned he was autistic, she seemed to understand -- her older son is also on the spectrum and she understood what I was going through and why this class was so important. One worry eliminated.

The teacher started the class and pulled out the bells for the kids to sing their "Hello" song. Oh No!!!!! This is what starts Simon running to the corner at his gym class. I keep him at the piano and we don't get bells. I tell the teacher that we're holding off on that activity for right now, and she just continues on -- she understands that we're taking it slow. The kids start to play the bells. I'm thrilled that, despite him keeping those hands over his ears, the intensity of the screaming doesn't change. He's still not happy, but the bells aren't making it worse.

Then we start playing the piano. When Simon realized what we were doing, he started to relax. One hand left his ear (not both, just the one). We were playing "Do Re Mi" and (Rest). I took advantage of the uncovered ear and really hammed up the "Rest". He started to giggle. Good. He's settling down. But the other hand won't move. We keep going. "Do Re Mi and REST!!!" (with his one available hand held over his head). The giggle is becoming a laugh. Again. And again. And again. Then the class starts to demonstrate. We're waiting our turn. The second arm is no longer tight. Because we're new, Simon is the last one called. When it's his turn, "Do Re Mi and REST!!!!" he puts both hands over his head. I sit there and hold my breath, but give him a big HUG!

It's now time to leave the piano for circle time. Simon is running over to join the group (but making sure I'm coming with him). He participates completely with the activities they are doing at the white board (including some rhythm work and writing music notes on the board). He's really starting to get into it. The rest of the class goes well! I was right -- once he finally allowed himself to relax and be receptive to the new material, he really loves music.

So, we finally found our activity for Simon. I signed him up for the rest of the semester and we'll be going until late January. At that point, we'll sit down and figure out the best option for the spring. But once we start, we won't stop. Simon needs this. And it's just as important as Rachel's gymnastics, and Daniel's baseball and gymnastics. We'll figure out how to make it work.

Friday, November 12, 2010

Waking from a sleep....

I was originally writing this to publish last night, but we had such an amazing story about Rachel, I held this off for a we have another case of posts on consecutive nights.....

We all want to see our children excel and improve. For the longest time, we've been seeing so much of that in Rachel, but not so much in Simon. Then we've had the last few days. Seriously, had to pick NOW to start showing me how much you've been learning????? Less than a week before your IEP Meeting, when I was all set to ask about changing your placement? Are you TRYING to give me, your dear sweet mother (no laughing please), a nervous breakdown?????

It started this weekend -- he was stacking blocks. And not just building a simple tower with the same block shapes. He was actually CONSTRUCTING a tower. He would build it, it would fall down; he'd make some changes and build it up again, it may fall down; he'd do it again and, if necessary, he'd PUSH it down. It was "normal" play. He really didn't want anyone to play with him, but for right now, we'll take it!!!!!!

Also, he's starting to request things and activities. If he is getting tired and wants to get ready for bed, he'll say "Pajamas" and bring either me or Kevin (usually Kevin) his PJs to help get him dressed. Sometimes he wouldn't say the word, just simply bring them over. He's singing and dancing to Pajanimals and Wiggles songs as we go through our normal routine. And he's getting more receptive to the idea of "play"when Rachel comes over to him and says, "Come on, Simon!".

But this meeting is coming up in just a few days, and I have to decide what I'm going to do. I was going to tell them that I have serious doubts about his placement. Now I'm not sure that's the smartest thing for me to do. I do feel I need to bring up his placement and make it clear that I still have questions about which program MCPS can provide for him that will best suit his needs. But I'll do it more quietly than I was planning. I'm no longer convinced that we need to seriously consider making the change, but I'm also not convinced that he's where he should be. I want to hear what they have to say and hopefully they will be able to give me specific reasons WHY MPAC is the best program for him, or why the other programs will not address his needs. I took some time to review his draft IEP as well as his last report card this morning and they say he's "Acheived" his goals, but then there are identical ones on the new IEP.

There are still just too many inconsistencies. And I feel like I can never get a straight answer out of them (not that I've ever really had the nerve to ask or follow-up appropriately). This question shouldn't take everyone by surprise. I kind of implied I was thinking this back in May when I had a conference with several members of his team (one of which will likely be in the meeting). It's just been a while since they've heard me question it in person.

In other words, I'm not going to let myself be hot-headed. The question remains, "Can I succeed?".....

Thursday, November 11, 2010

More Amazed Every Day

Rachel continues to leave me speechless. I had a parent/teacher conference with her classroom teacher this afternoon and when I left, I just couldn't believe this was the same child whom I was so resistant to enter an ABA therapy program with CSAAC 16 months ago. What was I thinking? I trusted those who were making the recommendation, yet I just couldn't bring myself to get behind it. But since we've started ABA, we went from having a lump of a child (an adorable lump, but still a morose child who rarely smiled or engaged anyone and excelled at throwing tantrums) to a happy energetic little girl who can't seem to get enough of the world around her.

I definitely get the feeling that her teacher is nearly as proud of her as I am. Her IEP meeting was about 3 weeks ago and they are starting to incorporate some of the changes that we planned, specifically working on placing her with a neurotypical Pre-K class to give her social opportunities with her peers and to teach her how to play with toys (an area that she is grossly deficient). They started bringing her to the Pre-K class this week and she actually spent some time there on Monday and Tuesday. Unfortunately, there are no opportunities for her to go back until next week (she was sick on Wednesday and Thursday/Friday there's no Pre-K due to half-day school days to allow for parent/teacher conferences), so they may have to take a step or two back when she returns. But the plan is to incorporate her into this class for 15 minutes/day for a while and slowly increase this to 1 hour/day.

The representative from the Autism Office wants to see her introduced with the Kindergarten classes as well, not only for the social interactions but for academic growth. They are working on this during the Kindergarten's specials (Gym is already done and they are considering music for Rachel [because she really enjoys the music classes]). Her teacher however (and I agree with her) feels that it's far more important to mainstream her with the Pre-K and hold off on Kindergarten. There are other ways to give Rachel the academic stimulation that she likely wants/needs without pressuring her being in a classroom that is more than she's ready for. The inclusion of some of the CAPP kids with the Kindergarten during the gym class is working well for Rachel. But if they are going to put her with the Kindergarten kids now, she's going to be doing "Kindergarten" for nearly 3 years. If that won't cause her to be bored by school, I'm not sure what will.

But she is just doing so well. And we are definitely on a path to make my dream of having her ready to enter a fully mainstreamed classroom for Kindergarten a reality and not just a pipe dream.

It's so nice to see things working so well for her.....

Sunday, November 7, 2010

He Surprised Me.....

Simon's IEP meeting is approaching, and I'm starting to get comfortable with what I'm going to do (asking about changing his placement). Then today happens....

Yes, today (well, tonight) was enlightening. He was a different child. He was cooperative. He was helpful. He was interacting with his environment (not people so much). He "read" his book. He wasn't phased when his older brother "Surprise"d him (which will often lead to tantrum [which is why (I sometimes think) Daniel does it -- he is a brother after all]). When the time came to get into pajamas, Kevin asked him to bring over his PJs, and he picked up the small stack and brought it right to Kevin and even sort of helped Kevin get them on him. As we were watching The Wiggles (as part of our routine), he was dancing and singing along with the music. During his nighttime books, he was anticipating and pointing to the interesting aspects of the pictures. He quietly settled into bed after we said our "Good Nights".

I wish I wasn't just mesmerized watching him and thought to get my phone in camera mode (for the dancing) and get it recorded to share with the world, or to be able to look back on as time continues to pass. It was a treasured moment that we don't see too often from Simon.

Where did this child come from? Is he here to stay or was tonight a fluke? Is he learning these things at school or is he just happy with our routine? Should I ask about changing his placement, as I've been leaning towards, or keep my mouth shut next week?

Right now I'm just going to relax and enjoy the wonderful night we just had with him. Tomorrow is another day and I will go back to thinking about this -- it's too important to let this go. But tonight was a good night.

Friday, November 5, 2010

What's Next?

This post is about me. And not about me venting about the issues surrounding my children so I can start fresh after hitting the "Publish Post" button. But about ME, my future and my life. I'm very happy being a mother and a wife. But for many many reasons it would be a wise idea for me to get a job working with others than just my family. I'm trying to determine the best way to go and what is the right direction for me to take.

When we first learned that the twins were on the spectrum, I wanted nothing to do with it. All I wanted to do was hide and pretend that this wasn't happening. I suspect this is what many others can say when faced with this situation. It took a lot of coaxing from others to get me to come to terms with my childens' diagnosis and to make sure they received the help that they needed. Through that process I read a few books on autism and theories of potential causes, did research on the internet, and panicked. As time went on, not only did I open up (slowly and with great resistance) to the options available to us, but I became fascinated with autism in general. It's become a passion. An obsession.

So, now that I'm looking to return to having a career outside of the home, I find myself wondering what direction I need to pursue. My previous outside-the-home career was as a data manager for a pharmaceutical company. I enjoyed doing that, but I currently have no deep desire to return to that life. Autism is where my heart is now. I thought of contacting Kennedy Krieger to find out if they needed a data manager for some of their studies. But that's not the same thing. That's several steps removed from autism and the people whose lives are touched by it. In other words, it's not enough for me right now.

While taking Domino for a walk, I find myself thinking about directions my life is taking as well as where my family is heading. And an idea struck me -- what about becoming a parent advocate? And the more I think about it, the more I like this idea. I would love to help other parents going through this maze and help them to make the right decisions for their child, and hopefully help them to achieve successful outcomes. However, I still need to research exactly what becoming a parent advocate entails and determine whether this is something that's feasible. I think this is a job that I can do well.

Will it happen? Time will tell. As I said, right now I'm in the researching phase of this potential career change. My guess right now is that it will happen -- this has been something that I've been working on for a few weeks and, normally, if it was a passing thought, it would have disappeared by now. I just need to get on the ball and get organized.

Thursday, November 4, 2010

Fitting In

Well, we are now about 12 days from Simon's IEP meeting, and I'm completely unprepared. I still don't know what the answers are. I still don't even know the right questions to ask. Well, that's not quite true -- I know the biggest question.....WHERE DOES SIMON BELONG?

I went to visit him at school not long ago. I actually got to spend some time in his classroom, but missed the circle time due to heavy traffic. I got to see him do an art project; watch him listen to a book being read; have a snack; and of course, talk to his teacher for a while. He seemed all right when I was there -- he was behaving as one would expect. He clearly likes doing these things and likes his teacher. But is he LEARNING anything? Or perhaps that question should be is he learning ENOUGH? Or, another perhaps, is he being challenged in ways to help him grow and develop?

Maybe that last one is the right question to be focusing on. We need to see him challenged so that his world continues to change and expand. He needs to be introduced to new experiences. He needs to be willing to follow an example so he can learn without compromising his independence.

Is MPAC the right place for this to happen? Or should he be at CAPP? (I still don't think he's ready for PEP -- not even PEP-INC). I keep finding myself thinking that we need to move him to CAPP.

But then I start thinking about why I am thinking along those it really the best thing for him? Or is it the best thing for me? Is my desire to have the twins together interfering with determining what is in Simon's best interest? Am I unfairly comparing them again? In my defense, comparison is necessary here. Through Rachel, I'm seeing the potential of change within a short time that a child can experience, and I suspect that even more is possible. Simon has not had that level of change. And I suspect that, even if his placement was perfect, we still wouldn't see that scope of change. The question before me is whether this change is something that I SHOULD expect from Simon (meaning that we have a problem right now) or if Simon is currently working to his full potential for the moment.

So, the question again -- is MPAC the right place for him? Or should he be at CAPP? I still seem to be leaning to moving him to CAPP. But 11 months ago, we knew that was the wrong thing to do. Am I sure now that it's right?

As nervous as I was about it, preparing for Rachel's meeting was so much easier. I knew the results that we needed. I just needed to make sure that I gave them all the necessary arguments to make sure things turned out that way (as it turned out, they agreed with me so there was very little for me to do). For Simon, I'm not sure what the right answers are. Therefore, I have no way to be sure if the results of the meeting are the "right" answers.

And what if I'm wrong.......

Thursday, October 21, 2010

Effective Communication

The definition of "Effective Communication" is "2-way process sending the right message, that is also being correctly received and understood by the other person/s." (direct quote -- credit to

Once again, when I visit Simon's school, I notice everyone always putting a positive spin on everything. His teacher kept telling me about the things he can do. She told me of his strengths. She told me about his love of books. She told me how much he loves music. She told me how he loves to play in the gym. She told me about how verbal he is (in comparison to the other kids in the class) and how he enjoys circle time. It seems to be "taboo" to talk about any issues that he's having. I had to ask about his "play" and whether he plays with toys. Nope. Will he interact with his classmates? Nope. But he knows the schedule! He answers questions when asked. He knows his shapes, colors, letters, numbers, etc. That's good. No, better......that's wonderful! But what about his ability to function outside of the classroom?

His class is HUGE (relatively)!!!! There are 10 kids with 1 teacher and 3 para-educators (today at least). Another teacher was in the room as well, but I suspect that was for my benefit so the teacher would be able to answer my questions. But all of these kids have significant issues and need more direct intervention. Simon's teacher was explaining to me after the class stepped away that she was preparing his IEP documents and doing some testing to determine what his goals/objectives should be for the next year. She was amazed that there were no academic goals in his existing IEP (we were more focused on basic life skills at his last meeting). She intends to incorporate more of these in for the next year.

This would have been a good time for me to ask about ABA and whether they engage in this teaching/learning technique in the classroom. It also would have been a good time for me to ask if she feels that his placement at MPAC is his best option. However, I still just don't know how to bring up these questions, probably because I still don't know WHAT my questions are. I continue to have doubts about the whole thing. Would he be better off at CAPP with Rachel? Or PEP? And what's the situation about MPAC closing? Will it exist until he enters kindergarten? I really would like to know these answers before the meeting. But it's been 8 months since I've been thinking these thoughts, and I'm no closer to having answers now than I was at that time.

Why is establishing "effective communication" between myself and Simon's school so difficult? Why can't I ask them the questions that are racing through my head? Why can't I engage in an conversation and voice my concerns? When I had a conference with Simon's teacher and the administrators last year, it was the same thing -- I just found myself listening to them glow about the progress he's made and I just couldn't say much of anything. I don't see it. And, no matter how hard I try, I can't pull this out of him at home. I know he's made improvements. But is it enough? Is there more that's ready to come out that needs coaxing? Or is he where he's meant to be for the time being? I would like to think we're progressing and he's not falling further behind. I suppose that statement is true, currently, mainly because he clearly IS learning. I DO see that. And he does interact with his siblings, even if it's not in the nicest ways and even if THEY have to initiate that interaction.

I'm comparing them again. Argh!!!!!

This is an INDIVIDUALIZED system. Simon's progress is not dictated by his twin. But, then again, if she's making this remarkable progress, shouldn't he? And if the answer to that is YES and I see that he's not successful at it, I have to ask, "Why?". Is the comparison warranted? Two different kids -- can't forget that!!!!

My head hurts. My heart too.

Monday, October 18, 2010

Worried Over Nothing

Yup. The meeting is done and over with and, as most who know me could have predicted, I worried about (you guessed it) Absolutely Nothing. Rachel is remaining in the CAPP program. There wasn't even a discussion (there may have been some in the room who didn't agree, but they didn't say so during the meeting -- they may have discussed it before I arrived or at a previous time). I just wish the rest of this journey was so easy.

First of all, this was NOTHING like the initial meeting that we had 10.5 months ago. We didn't need to spend time talking about a diagnosis or determining if she were eligible for an IEP or other services. Because we've gone through that, it was just a given. Given all of that, we didn't even have to spend much time discussing ESY for next year -- given her diagnosis and the difficulties she has in transitioning back into the school setting, again, it was a non-issue. We were able to jump right into her progress and her goals/objectives.

These really were just a build on last year. What we spent more time doing was discussing the differences between what she does at school versus what she does at home and trying to determine how to give her the services that would best suit her. I mentioned to them that I really wanted to see her (1) get more socialization opportunities with her peers (neurotypical, ideally, but the other autistic kids in the program would be good too) and (2) to improve her willingness to try new things, food in particular. The way this proceeded took me a bit by surprise.

Let's start with the food -- when Rachel's teacher started talking about her progress, she mentioned that she ate all day long, and a large variety of foods. She tried almost EVERYTHING! That was how we discovered she liked peanut butter (probably her most favorite food). She seems to have a bottomless stomach and just always wants more. Now this is something we don't see at home. For us, she's a picky eater. She will rarely eat breakfast, almost never eat dinner (unless it's a all-beef kosher hot dog or peanut butter), and she wants the same lunch every single day. Her unwillingness to try new things has caused a great deal of concern because we don't know if she's getting adequate nutrition. And she's extremely "determined" -- if she's decided she doesn't want it, nothing is going to make her change her mind. We're going to start sending in some dinner-type items for her in her lunch box to see if she does better (1) having it at lunch time and (2) eating it at school. Also, we're probably going to have her buy lunch occasionally to have that wider variety of food items. Will it work? Communication notebook and email will tell us that over the course of the next few months.

Socialization -- this is the biggest problem for Rachel with the CAPP program -- because of the one-on-one nature of the program, she has very limited opportunities to play or interact with her peers, even though she's in school for 30 hours/week. Because she is excelling within the program, we need to think ahead to kindergarten (even though it's still nearly 2 years away) and how she's going to do when she arrives there. It's been my goal from the moment we learned that both twins were on the spectrum that they would both be ready to attend and participate in a mainstream kindergarten classroom environment. Simon will likely NOT be ready for that. But Rachel has shown such improvement that we have to consider the possibility that we have an attainable goal there. She needs to learn how to interact with other children -- not just her teachers. To that end, a statement is being put into her IEP document itself that indicates that she is to engage in "mainstreaming opportunities" with the Pre-K and possibly the kindergarten classes at the school.

WOW! They are talking about possibly having her spend 1-1.5 hours in the morning and/or the afternoon with NEUROTYPICAL PRE-K kids starting in the very near future!!!!!! She's already spending time doing the specials (phys-ed, specifically) with the kindergarten children. Academically, they'd like to see her working with the kindergarten classes as well since she is ACTUALLY READING (they told me -- I didn't ask, even though I'd suspected it for quite some time)!!!!!!!!! She knows her numbers very well too. She spells out words. She can do this both using verbal language and by using the ASL-alphabet (which is something Kevin started adding to the spelling game to make it a little more interesting for him). She's become such a little sponge!!!!!

Don't get me wrong -- she still has her issues. Her speech is significantly delayed. She requires even more OT than was originally suggested to help her with fine motor control. She still has "behaviors" that need to be addressed. In other words, she is definitely still autistic.

But she's making such amazing progress!!!!!

Saturday, October 16, 2010

Getting a "Grip"

Well, Rachel's meeting is in 2 days -- Monday morning. This is the first meeting I'm attending since each of the twins were officially placed in their respective programs last December. For Rachel's meeting 10.5 months ago, I was terrified, but prepared. We knew where she was, what she needed and everything went pretty much exactly as predicted. And from that point forward, things have gone so well for her. But has it gone too well?

Fortunately for me, this meeting is about Rachel, and not Simon. Directions are totally clear. She is thriving and things need to continue. The best way for that to happen is for things to remain the same. And I'm not the only person who sees it that way. There will be at least 2 others in that meeting who feel she belongs in her current program. However, unlike the initial meeting where everyone was on the same page, it has been implied to me that there will be others in the room who will feel that she needs to move to a less-restrictive program and her placement will be a discussion.

I know that the current philosophy is that children should be in the "least restrictive environment". However, what happens when the "more" restrictive environments provides the services that a particular child NEEDS? The CAPP program always appears, to me at least, to be the MOST restrictive program offered to autistic children by the Montgomery County Public Schools. However, this is the ABA-intensive program that is offered. As we've seen over and over again, that's what works for Rachel. And, to borrow a long-existing expression, "If it ain't broke, don't fix it". I only hope that the rest of the committee sees things in that same light. If not, I have a lot of convincing to do.

But, surprisingly, I'm calm, and relatively collected. I know things will work out. As I said earlier, Rachel's the easy one.

We are still hopeful that in, say 5 years, that we will bring Rachel in for a visit at KKI and they will inform us that she no longer qualifies as being on the spectrum at all. That, we know, is unrealistic. But the possibility of her being in a mainstream classroom for kindergarten was unrealistic 14 months ago and now we are seeing some early signs of this becoming a "reality". Given where we started and the positive strides she's taken to date, wouldn't that be an amazing thing!

Wednesday, October 13, 2010

Communication is Key

With Rachel's meeting on Monday, I figured it was time to ask the question for Simon. His current IEP also will expire at the end of November and it usually takes about 4-6 weeks to schedule the meeting (or that's what I had been told, and it worked that way for Rachel when I requested the meeting). So, in Simon's Communication Notebook this morning, I asked several questions, including when we should be scheduling his next meeting.

When he came home, I looked in the notebook and his teacher had responded (which was a bit of a surprise -- I sometimes have to wait a day or two for any answers). She informed me that his meeting was scheduled for 11:30 on November 16th. 5 days before the meeting, I would receive the paperwork. WHAT?!?!?!?!?!?!?!?!?! Does that mean if I didn't ask about the meeting beforehand I would have 5 days notice for the meeting, when I received the draft IEP?

This is just one of the differences between MPAC and CAPP and the way the two programs are currently run (I know that the same organization that runs MPAC used to run CAPP until shortly before Rachel joined the program). I'm in regular contact with Rachel's teacher. I'd say there's an average of 1-2 emails exchanged every week, plus daily updates as to how she did on that given day (sometimes a full note, sometimes just a brief summary on a laminated sheet sent back and forth daily). When we arranged for this meeting, I had a month's notice. I received the paperwork 1.5 weeks before the meeting and have taken the time to go over it all, and will continue to do so over the next few days. I also was able to arrange for the observation visit to clarify a few things for myself and help me determine the best ways to proceed.

With MPAC, I'm lucky to learn ANYTHING that's going on there. I get one note in the notebook about every other week that really doesn't tell me much. The teacher will answer my specific questions, but sometimes it takes a day or two. I haven't been to observe him yet (but am trying to arrange that visit), but when I visit him, I have to remain out of sight (whereas I'm in the classroom with Rachel). Because of that, I'm limited in what I can see or hear (based on last year).

Things that are going to be said during this IEP meeting is going to be a surprise to everyone. I'm sure they're going to say things that they're observing (in a positive and negative light I know) that I will have no prior knowledge about. And they're going to be surprised when I bring up the I have questions about his placement (though I'm not sure what would be the correct placement).

It had to be Simon that I had these issues -- the one that I'm always questioning and struggling with trying to determine the right and best thing(s) for him. Hopefully, I'll be going there the latter part of next week and getting to see how he's doing in the classroom. Once again, I'll see the discrepancies between what he does at school and what he does at home. Maybe that will tell me if his placement is correct.

Monday, October 11, 2010

Happy Birthday!

Well, today is my birthday. I'm 39 years old. And I'm REALLY and legitimately 39 years old. One more year until I enter a new decade.

As I prepare to begin my 40th year, I find myself looking back on the last 20 years or so, and wondering how I got here and is it where I want to be. It's not where I pictured I would be when I was preparing to exit my teen years. It's not where I imagined myself to be 10 years ago. Not even 5 years, even though the perceived direction of my life had already started to change. What (if anything) have I accomplished? What (if anything) is lacking? What can I do to make the next year even better than the ones that preceded it?

20 years ago, I was a college student looking forward to a future as a woman who would have it all. I'd be a successful pediatrician with a family including 4 kids (always envisioned all girls for some reason). It would be a full life, but sitting here now, knowing who I am, probably was always unrealistic. But, in my defense, who doesn't envision their future (as a teenager) with a somewhat unrealistic perspective?

The first thing to go was my career choice. I went through the pre-med program at Brandeis University and survived to tell the tale -- BARELY. I passed all of my courses and was never in danger of not remaining in "good standing". But, I'd have to say that I "survived" the program. But I had wanted to be a doctor from such a young age -- I was probably younger than Rachel and Simon when that aspiration became a goal. I just couldn't bring myself to lose that until after I completed college. Then, shortly after that, I realized that being a medical doctor was not going to happen. But since I had always focused on "medicine" as a career, I really wasn't sure where to go with that and chose epidemiology.

It's amazing how these decisions come into play as one continues to mature. My knowledge of epidemiology and my ability to understand research articles has been invaluable since learning of Rachel's and Simon's issues.

I've always mildly believed in fate. Everything happens for a reason. Every decision we make affects what happens next. We are always in the places that we should be, even if we don't understand why that particular location or decision is/may be important. My decision to not go to medical school but to pursue a Ph.D. in Epidemiology at the University of Pittsburgh put me in the right place to meet my future husband. Between the time we got engaged and the time we were married, I left the academic program because I realized THAT wasn't the right thing for me to do. But if I didn't pursue it, I wouldn't have met Kevin.

In that same direction, all the work I did in epidemiology gave me the ammunition and knowledge I need to deal with autism in my children. I may not have chosen to pursue a career in "epidemiology" (professionally I was a data manager for a pharmaceutical company before choosing to be a SAHM), but years later, have found myself falling back on my education and training to understand what has happened to my children and what I can do to help them. It may make me opinionated, but I'm able to take information presented to me and make informed decisions as to what the "correct" decision is for me, my children, and my overall family.

So, my life is good. Would I make any changes? Well, there are always things that would be nice if they were different, but everything that is fully in my power (career choice and other decisions I've made), I have no regrets. That is something that I know many others can't say and something that I'm proud of.

Despite all the complaining I've done on this blog for the last year or so, my life is good. This blog has truly become a repository for many of my negative emotions that really can't be put anyplace else. I can't show them to my children because they don't deserve it. And it's not something that my husband is responsible for, therefore, in many cases, nothing that he should be greatly burdened with. But there are times we need to just vent out our anger, frustration, disappointments, etc. This blog is my space to do just that.


Saturday, October 9, 2010

Destruction, thy name is Simon

This really isn't an autism thing -- it's just a part of who my kids are. I suspect that, even if "autism" wasn't a part of our lives, I would still see these types of things. Maybe I'd be a little less patient about it. Or maybe I'd be more amused. I would probably expect more understanding, as I do expect Daniel to "listen" and not destroy the world around him.

But this is yet ANOTHER example of how Rachel and Simon are total opposites, except for when they are exactly the same. Rachel thrives on "ORDER". She likes to put things "away" (specifically, she likes to "put in", which is one of her first mastered Lovaas ABA tasks). Simon, on the other hand, thrives on "CHAOS". The more something is messed up, broken, out of sync, out of order, upside down, the better. He constantly overturns furniture. He likes to take the cushions off the couch. His new favorite thing is to dump the toy chest in the playroom upside down so the hundreds (which can feel like thousands) of Legos scatter. He likes to turn the indoor-outdoor slide upside down. He ripped the door out of the doorframe. He just likes things to NOT lie as they are designed to do so.

We've found this both comforting and frustrating. In some weird ways, it's kind of funny -- it's almost like his way of interacting with others, specifically, his older brother. He likes to destroy Daniel's block towers and projects, and as Daniel is discovering the power of legos, this is becoming a real problem. He likes to disorganize the "order" that someone else is trying to create around him. He always laughs at the disorder her creates, especially if he gets the negative reaction from someone. Is this just his way of controlling those around him? He actually seeks this out -- he will run into a room and overturn something, then "hide" (aka, run away from the scene of the crime, but make sure he can watch the reactions of others).

In order to minimize the effect of this, I've removed so many of the toys from their play area. However, I have to leave some things for them to play with. And Simon continues to find things that he can destroy, so it's almost pointless. I'm trying to the basement organized. It's just a (seemingly) impossible task when, every day, chaos reigns. Or, should I say, Simon.

Wednesday, October 6, 2010

Sleep Training -- Again......

How does one teach a child with minimal verbal skills that they need to stay in their room when they wake up in the middle of the night? That's the question we've been asking ourselves and living with for the last month or so.

Yes, as I think I've mentioned before, Simon has figured out how to maneuver around the final obstacle (pressure-mounted gate) that keeps him and his sister in their bedroom for the night and come wandering into our room at a whim. Well, TECHNICALLY, "maneuver" may be the right word -- he simply pulls the gate down to the ground, runs into our bedroom and jumps on my side of the bed, climbs over me, smiles and says "Bed!". This is something that we've been dreading for quite some time. Most days, on a good morning, he just simply wakes up earlier than the rest of us (on the order of 5am). However, he will often wake up closer to 2am and be fully awake.

When this started, I would bring Simon back into his room and take that giant step backwards of staying in there until he fell asleep, then trying to quietly sneak out. While Kevin was on his business trip last month, I pretty much just put up with it. I let him fall back to sleep in my bed because I (1) didn't have the energy to deal with it and (2) (at the end of the week) was dealing with his sick brother and needed to be available if he called to me during the night (which happened several times). However, after Kevin returned, we both agreed that something had to be done.

We went back to the no tolerance policy. He would come into our bedroom and I would bring him back to his room, put him back in bed and leave. He didn't necessarily know this, but I would stay just out of sight but still near his bedroom door and, when he started to try to leave his room again, I'd send him back to bed. Of course, this led to a lot of crying his part and strong feelings of guilt and neglect on my part, but I felt I was doing the right thing. Eventually, I was usually able to get back to bed, even if I wasn't able to fall back to sleep.

Fortunately, this usually only took one (or two) trips per night, when they occurred. However, that only seems to work when he's waking up at 1 or 2 in the morning. If he wakes up after 4:30 or 5am, he seems to feel that he no longer has to stay in his room and he can wander through the house (or at least upstairs). This morning, after he left his room 4 times, Kevin decided to get up and get ready for the day and I just gave up.

At what point is it right to just give in and recognize that he's not going back to sleep? Should he still stay in his room if it's more likely that he's going to wake his sister than go back to sleep? Is it really causing any harm for him to be up and in my bed? I'm just not sure anymore.

But at least there are some nights where I'm allowed to get some sleep. They aren't frequent enough, but I am getting that periodic break. This was something that I couldn't say this time last year. I suppose I should be grateful for that.

Thursday, September 30, 2010

At least I'm not alone

I went to visit Rachel's class today. There were a few things I was hoping to glean from this visit. First, I wanted to check up on her and see how well she was doing (reports back are always so positive). I wanted to see the differences between how she behaves and works at school versus at home. And, most important, I wanted to feel out the question of her placement following her scheduled IEP meeting next month.

The visit went really well. She didn't see me there at first and I got to observe her at play working at a bead table (pouring on/into her teacher's hands and into her own). It was a nice sensory exercise -- made sounds and had a different texture. And she looked like she was having a lot of fun. Then she went back to the table to go back to work. Shortly after getting to the table is when she noticed me. She's doing 15-17 tasks between motivational activities, which is MUCH higher than when I visited her last year (at that time they were just increasing it from 3). Her teacher informed me that this number is MUCH higher than the other students in the program. The fact is, they still aren't sure of how high she's ready for. They are continuing to increase it. And, because of that, she's just flying through the programs.

After I was there for a little while, I asked the teacher whether she felt that the committee was going to try to remove her from CAPP and transition her to PEP (probably INC). This was a question I was afraid to ask. She gave me a very quizzical look and asked me for my opinion on the subject. I wholeheartedly told her that I feel she needs to stay where she is -- she's doing great and we shouldn't change that. The only reason I called for the meeting was to update her goals. I swear, I heard a sigh of relief from her -- she agrees with me. And, apparently, so does the person who will be running the meeting (the school's liaison to the Autism Office). I was warned that there will be others present who feel that she SHOULD be transitioned, but at least I know, going into the meeting, I'm NOT alone in my thoughts on this subject. I don't have to convince EVERYONE. I may not have to convince ANYone as the others in the room may do that for me. This makes things much easier as I go into the next few weeks preparing myself for this meeting.

Her teacher did explain the consequences of keeping her in CAPP for another year, because there are trade-offs that need to be considered. CAPP really doesn't work on any academics -- it's pretty much a behavior and language-based program. Also, the program is 1-on-1. When she goes into kindergarten, the lowest ratio she will have is 3-on-1. And if she's ready to be placed in a fully-mainstreamed kindergarten classroom, I know that Daniel's class is 16 kids with only the 1 teacher. She needs to learn how to work with others, and CAPP doesn't focus on that goal.

There are ways around those issues. There were 2 students during the last school year who spent a portion of their days in the mainstream pre-K classroom. Now they're talking about extending that to the Kindergarten classroom. But because of the nature of kindergarten versus pre-K, it is an entirely academic program, with minimal play opportunities. But we can work out a process of mainstreaming her over time. Right now, the goal is to give her more reasonable goals, at her level. If I need to schedule another meeting in 6 months, or even less, to work out a plan, then so be it.

So, suddenly, I'm not so nervous about this upcoming meeting. I'm still a bit apprehensive and am not sure what to expect. But not having to worry about having Rachel's placement changed takes a HUGE weight off my mind and allows me to focus on other things. I still need to think about what I want to include in her goals. I also need to think about what I feel she needs to work on and determine the best way to make things happen. I also need to make sure that I don't OVERthink this, as I have a tendency to do.

But it looks like we're going to remain with CAPP for Rachel -- just as it should be.

Tuesday, September 28, 2010

Time For Work

Well, Rachel's next IEP meeting has been scheduled -- we're having it on October 18 in the morning. Now I need to prepare myself for what's coming.

The first thing I need to consider is "What can I expect the IEP Goals to incorporate?" I was surprised at the last meeting to see so many basic "life skills" making up much of the goals, so I'm working under the assumption that we can continue to include those. That being said, we need to work on FOOD.

Rachel is, well, let's be "politically correct" and call her "determined". What that means (in reality) is that she's STUBBORN (just like her mother). She STILL refuses to drink milk from an open cup (but will gladly have milk from a sippy cup, or juice from an open cup, so it's not like she's not capable of handling a regular cup). She REFUSES water in any container. This behavior isn't limited to just drinks. If there is a food she doesn't desire, she won't touch it. At dinner, the only things she will eat are hot dogs, peanut butter on crackers (but she won't eat the cracker), and, well, lately, THAT'S IT!!!!! Sometimes we'll give her some cheese, but normally she has that for lunch. This is unacceptable. She won't eat any meat (other than Nathan's or Hebrew National All-Beef Hot Dogs [yes, my daughter is a hot dog snob and will only have those specific brands]). She won't eat any vegetables. She's even starting to get picky about fruit. We know she's hungry because she will voraciously eat a preferred fruit when it's put in front of her (after we give up on dinner "proper") and she will gladly accept a reward of a goldfish cracker or two (when we shove a piece of chicken or fish into her mouth). On the plus side, she won't spit out undesired food. But the only way she'll eat it is if we shove it in her mouth and wait there until she chews and swallows. This isn't the right way to treat a child. But we've done everything else we can think of. We have to consider her nutritional needs. We need help.

I'm going to visit her at school on Thursday, and while I'm there, I'll stay for lunch. This will do two things for me -- first, it will show me how cooperative she is during school lunch times (since lunch is the one meal she will consistently eat, even for us at home). Second, it will allow me to see what the other kids are doing and what the teachers/paras are doing to ensure they are eating properly, and maybe I'll get to see how FAR they will go. I don't know if it will give me solutions, but it may help me shape the goals I intend to add to her IEP next month.

I would also like to work on her imaginative play and social skills. She will do something during a task if she's asked to, but I don't know if she is actually engaging in "pretend play". It's also hard to judge what she does when she gets home from school. She's so tired after a long day that she is no longer willing to "work". I'd really like to see this skill begin to take shape, even if I don't see much of it at home.

At this point, I'm not so worried about her learning her letters or her numbers. She knows those already and can recite the alphabet both forwards and backwards. She can also spell (approximately) 15 words on her own (but she likes to have each letter repeated back to her). She is constantly asking how to spell words she isn't familiar with the spelling and that number continues to rise. I also suspect she can read many words, but I don't have any proof of this.

I know I've said this before, but I'll say it again. Rachel needs to remain in CAPP. I'm hoping that, since she's been so successful in this program, this will be a non-issue. Why would they change something that is working so well? I'm hoping they don't take the "less is more" philosophy too literally.

I just suppose I need to get my research hat on. I need to learn exactly what is expected at these meetings so I can come in fully prepared and be the best advocate I can. Hopefully, by the time we have Simon's meeting in November, this will be easy since I'll already be a bit more prepared. And, since I hope to include some of these things in his list of goals, I'll have a better idea as to how this should be done.

Friday, September 24, 2010

Going a bit off topic -- The Power of Music

In late July, I read an entry on the Laurie Berkner Band Blog and it talks about the magic of music. A paragraph there reads, "We want to know if your kids have any "magic songs" - what songs make them feel happy, special, and/or magical inside, or calms them down? What song is a "must-have" in the car? What about at bedtime? Bath time? Etc." (full article at Ever since reading this, I've been thinking about it and how it relates to each of my 3 children. Now the time has come to put some of these thoughts here.....

Probably the earliest songs that we sung to our kids to calm them down that they reacted positively to were songs that we made up our own words, or at least modified the existing words to ones that seem to fit the moment. For example, I sing the "I Love You" song, usually to Rachel and Simon (until recently) every night before bed. It's sung to the same tune as "Are You Sleeping" and it's sung through 3 times -- it mentions each kid's name in each of the three positions and when singing it to only Rachel and Simon, I'd switch the order daily as to who's name went first. We also sing "Go To Sleep" (Brahm's Lullabye) with a slight modification to words that Kevin made up for Daniel when he was a baby. The words to both songs are below.

However, there have been many other songs have also done the trick. For Daniel, the first one was probably children's song "The Ants Go Marching". He always enjoyed anticipating the next number or the rhyme or performing the motions. But when he was about 16-18 months old (or so), we discovered "The Wiggles" on Playhouse Disney. This was a HUGE introduction for him for many many many songs. His favorite song, from that time forward for probably close to a year, was "Rockabye Your Bear", by The Wiggles. He loved the song, in any form that it was performed. It would be a direct performance on the screen, or at a "Wiggly Concert", or it would be sung by myself or his Dad -- any way he'd get to hear that song, it would be a hit. He also discovered "Can You Point Your Fingers and Do The Twist". This one didn't have the same impact right away, but he loved to dance to it, and after Rachel and Simon were born, Kevin would sing it while putting Rachel and/or Simon in their carseat, Daniel would dance to it, and it would keep them all entertained (which makes it the first comfort song for Rachel and Simon).

Then, when Daniel was just over 2.5 and the twins were about 10 months old, we discovered the Laurie Berkner Band, by recommendation of a friend of mine. We started seeing her performances on (then) Noggin's Move To The Music that was sometimes tacked on at the end of a VOD Blue's Clues (Daniel discovered Blue's Clues just when I stopped working). The two songs that kept coming up were "Under A Shady Tree" and "Googleheads". The kids liked "Shady Tree", but "Googleheads" continues to be an ABSOLUTE favorite of Rachel's. As soon as she hears it coming on either Jack's Big Music Show (which the twins LOVE) or just the next song playing in the car, she starts shouting "EYES"!!!!!!!

We have also used songs to help Rachel get through tasks that she doesn't want to complete. I will sing a song to her and when the song is over, the job is done. The most popular ones for that is "I'm Not Perfect" or "Mister" (both LBB songs) but we've done several songs by The Wiggles in the past as well, and it's usually while I'm combing out her hair. She knows to anticipate when I'm getting near the end and we always end these songs the same way. I've also started using this technique sometimes when she's sitting on the toilet -- she needs to try until the song is done. Then she can get up and play. It's helpful to get her to stop rushing which often leads to accidents.

Simon is the most interesting one of the three when it comes to music. From the time he was about 4 weeks old, we noticed that he responds to music. My parents stayed with us for a week to help me make the adjustment from being a mother to 1 to a mother to 3 (my in-laws were here the week before) and also just give me some extra hands to help as I recovered from the c-section. My mother noticed one of her first days here that he would quiet down if she started to sing to him. It didn't matter what. Just the sound of a melody was soothing. Consequently, I've been looking into music programs for him starting this term, whereas I'm waiting a little longer for the other two -- if he is so responsive to music, we should be using it. Unfortunately, most programs I've found for preschoolers, much less preschoolers with special needs, meet during the day, while Simon's in school. So, I'm trying to do things on my own and will look for next term. I can only imagine how wonderful that outlet would be for him -- and it would be so nice for him to have his own special way of expressing himself.

Rachel and Simon's newest "magic song(s)" are both by the Laurie Berkner Band. The first one is "The Goldfish Song". This gets sung EVERYWHERE -- at mealtime, while waiting for the bus, while getting dressed, in the tub, on any little whim -- the only place I don't let them sing it is at bedtime. They both love it. Also, for the last two weeks or so, I've replaced the "I Love You" song with "Moon Moon Moon". The strange part is, the first time I sung it to them, I realized about halfway through, I didn't know all the words (or tune) if I wasn't singing along with the CD. So, I made it up. I was mostly wrong, but that doesn't matter -- I have to continue singing it just that way. Funnily enough, when they hear it the correct way on the CD, it doesn't phase them. That's Laurie's way and Mommy sings it Mommy's way at bedtime. No worries!

But all 3 of my kids love to sing along with music whenever they possibly can. Sometimes they'll do it at the top of their lungs. Other times, in a high-pitched monotone. Sometimes with the dancing. Sometimes while they are simply lying in bed. But they always want to hear it.

It's just the "Magic of Music".

I Love You Song (to the tune of "Are You Sleeping") (sung 3 times, each time moving the names around so that everyone is first, middle and last name recited once)
I love Rachel; I love Simon
Yes I do; Yes I do
I love Daniel too
I love all of you

Go To Sleep (Brahm's Lullabye) (name order switches nightly)
Go to sleep; Go to sleep
Go to sleep Rachel and Simon
Go to sleep; Go to sleep
Go to sleep both of you.

You've had a busy day
And you should be so tired
I hope that you're sleepy
And that you're not wired.

Thursday, September 23, 2010

It's that time again.....'s on. We're unofficially scheduled. Rachel is about to have another IEP Meeting. The tentative date is October 18, in the morning, and we're going to discuss her goals. It's only about 6 weeks before her existing IEP expires.

I'm almost as nervous about this meeting as I was about the one on December 1 last year. And this time, I requested it!!!! I'm afraid their going to try to take her out of CAPP and put her in PEP-INC. If that's true, it is something I need to shut down right away -- she has been unbelievably successful since January 12 (and before). I attribute MUCH of that to the program that she's currently enrolled, i.e. CAPP. If they remove her from the program now, what's to say she's not going to experience a significant regression?

The "problem" is her annual goals -- she's pretty much achieved them all. We want her to continue to grow. We also want her to work on some things that were not considered particularly important 9.5 months ago. Did we not put enough expectations on her last year? The fact that she nearly reached all of her goals was apparent to her ESY teacher in July -- that was after only 6 months of the program. Do we need to make the goals more aggressive? Or do we simply need to be prepared to have multiple meetings in a single year? There are families, I know, that have nearly monthly IEP meetings in order to address their kids' needs and evaluate their progress. Are we going to be like that for her?

And, as is often the case when I have to do something for one twin, should I consider doing this for Simon as well? He has NOT come close to achieving his goals and his meeting is due on or around November 30. But there are things that I would like to reshape. And, also unlike Rachel, I'm not always 100% certain that his placement is correct. Would he be doing better if he were at CAPP? I don't think he's ready for PEP-INC though. Would he be better served with me requesting a meeting sooner rather than later?

I guess the thing is, I'm not sure how a follow-up meeting is run, and sitting here right here and now, I feel totally unprepared. Is it just reviewing the goals, or is it more like the initial meeting where much time is spent determining eligibility for an IEP? Will they argue placements with me, or will they agree with me that Rachel is where she belongs? If they don't agree with me, how do I convince them of the truth (in her case) that I'm right? But I'm getting ahead of myself. I just need to get myself prepared for her meeting, not worry about Simon until after it's over and then I can be sure that everything is exactly the way it should be. Just hope I can get some sleep so I CAN work on being prepared.....


I just need to remember; the most important goal for me at this meeting: RACHEL NEEDS TO REMAIN IN CAPP!!!!!!!!!!

Monday, September 20, 2010

We put it off long enough..... it's time to go again. I hate doing this. I always put it off for as long as possible. But it's getting out of hand. We need to do this. It's becoming unruly. We were supposed to go last week, but illness got in the way. Yup......It's time for Simon to get a HAIRCUT.

Simon has NEVER liked to get haircuts, but it wasn't so bad early on. Unlike with his older brother, we started with the buzz, permitting the stylist to use the clippers (for Daniel they were only allowed to use the scissors for the longest time). But the experience has been getting steadily worse. I'm not sure if it's just that he's getting bigger (consequently stronger) or if he's becoming more afraid of the situation, or something completely different. But now he HATES getting his haircut. And when Simon HATES something, we try to avoid it as best as possible, which may not be helping him much.

We used to go to a place in the local shopping mall specializing in cutting kid's hair called Cartoon Cuts. But, we went one day and the person who ALWAYS cut his hair was gone. Then the next time we went, the store was gone. We had to find somewhere else.

There's another kid's haircut place not too far from here. I had taken Daniel there once before, before we moved 5 miles further up the road, called The Yellow Balloon. They were OK, but I really preferred the way this one person at Cartoon Cuts did the kids hair and the extra travel distance was enough to push me towards the mall, so we hadn't gone back for a while. That is, until this summer when Simon needed a haircut and that was the only place I could think of to take him.

I sit in the chair holding Simon tight, keeping my arms around his so he can't squirm away (despite his many attempts at it) and the stylist gets started. She goes as fast as possible -- trying to be done within 5 minutes, tops. Then, when it's all over, Simon gets a handful of Goldfish crackers (or whatever else is handy in the huge backpack I carry with me when I go anywhere with any of my children), I'm wishing for an aspirin (for the headache) and an icepack (for the bruises), and we head home.

But he looks so much better (once he's calmed back down), as you can see in these pre-post shots.

There's got to be an easier way. I know it. I just need to find it. And before Simon gets much bigger and stronger. He's quite violent when he feels trapped.