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.