Comments make me think

Someone made a very interesting comment on my last post. I didn't respond to it directly even though I had thought about doing so, but this blog is not designed as a conversation, just a series of tales and situations. But I have been thinking about it and wanted to bring it up again.

The commenter suggested that I bring a blanket for Simon to the concert on Sunday. It would serve multiple purposes -- it would give him the security of something that he's familiar with. It would also give him something to hold and to rip apart if he needed that. But also he could use it to help shield the noise by covering his ears with that since we can't use headphones for him. This suggestion was EXTREMELY appreciated.

First of all, let me say that we are bringing something special for Simon (and Rachel and Daniel) -- a stuffed animal for each of them. These concerts are themed "Birthday Party Concerts", and everyone is supposed to bring in an animal because they have birthdays too. Also, when they sing the song "Pig On Her Head", perhaps they will do the animal that our kids bring (didn't work that way in May, but we're bringing different ones this time).

But I've been thinking of what (if anything) elicits that attachment in Rachel or Simon (we have things for Daniel) and I realized that they have NEVER formed an attachment to a toy/stuffed animal/blanket like that. Not even a pacifier when they were babies. Is that yet another autism trait (since one of the problems is that they have difficulties forming attachments to people)? Or is it just them? (for the record, I know many neurotypical individuals who didn't have this kind of attachment to an object - but for some reason this comment made me question this specifically)

Daniel's formed attachment to items, even though the specific item has changed over time. When he was a baby, he needed a cloth diaper in the crib with him, especially after he started day care when he was 4.5 months old (we would bring it to and from daily). And there were several stuffed toys that each had the honor of being a favorite that must be present for him to go to bed (right now it's "Zebra" who has been his favorite for about 2 years now -- this one is a true keeper). Whenever we travel, we make sure to bring this with us, and make certain that when we leave, it's in the car or in his arms. And we love to see this in him.

I posted this question on a couple of different autism "pages" on Facebook that I regularly visit, asking if anyone else has made this observation about their kids/grandkids/students/etc who are on the spectrum. Someone did respond back that their son has a blanket that MUST be there when they go to sleep at night or it will be a long night. We have tried to give them several things to allow Rachel and Simon to attach to, and nothing has had this reaction. Don't get me wrong. They have certain toys that they really love. Rachel enjoys playing with her Barbies (appropriately). Simon loves to cuddle with a stuffed animals, but is not particular about which one (though there are a few he favors and others that he avoids). Last weekend they received birthday presents of Pillow Pets (Rachel has a ladybug, Simon a panda) and they both really like these. Rachel will carry it back and forth from room to room, but that's about as close to an "attachment" to a toy that we've seen from either of them.

Except for books and Rachel. For her, books are another story. When Rachel made her transition to CAPP last year, she couldn't go ANYWHERE without a book. Her preference was a Sandra Boyton Board Book (didn't matter which one). When she arrived at school the teacher had to have one ready or she wouldn't go with them. Then she would carry it to the classroom. She would carry it from activity to activity. She would carry it when they left the classroom to go to specials or to lunch. She would carry it THROUGH that activity. She would carry it when she walked to the bus, and many times she would carry it on the bus ride all the way home. It was typical to find a book in her hands or in her backpack when she stepped off the bus. As she got used to the program, the books were less and less necessary and now she doesn't have one at all (except for circle time or time in the book corner). But again, it wasn't an attachment to a particular object -- it could be ANY book. She just needed to hold it and be in control of it. So I'm not sure if this really counts for the original question.

The differences between a child on the spectrum and not on the spectrum are often so subtle. Some things are obvious, but for many things, you see these same traits in children both on and off the spectrum. What leads to an "autism" diagnosis (anywhere on the spectrum) is that they have a certain number of these traits across several categories, just as all psychiatric diagnoses are made. This is one of the reasons that you, in general, can't look at someone and know for certain that they are on the spectrum or not. You may be suspicious, but it's possible that that individual is just having a bad day. Nothing is set in stone when it comes to human beings, children in particular. They are all just so unique.

Time is getting close....

.....The Laurie Berkner Band concert is in 5 days. In 5 days, we'll get a reasonable idea of the Simon's growth regarding live performances over the last 10 months. We're not doing as much "prep" this time as we did in May. Don't get me wrong -- we're not going in blind. And we're not going in unprepared. But we've been much more "low-key" in what we do to prepare him for the experience.

First of all, we've been talking it up, but not constantly. Just bringing it up conversationally. Whenever we're watching an episode of Jack's Big Music Show that happens to feature them (which, I will grant you, is most of them) or watching one of the Laurie Berkner Band DVDs, we comment something like "Oh, yeah -- we'll be going to the concert soon. What songs do you think they'll play?" and they will either ignore us or mention the song that they're hearing at that moment (note, we have a "draft" set list and have a good idea of what songs we're going to hear). We also will ask them if they're excited or if they would like to meet the band. We've asked Simon if he would do his "Moon Moon Moon" dance for them when he sees them. Just stuff like that.

But now we're backing off watching these shows. We don't want them to be too saturated. Instead, I'm going to start bringing out the videos sent to me by my contact at Two Tomatoes Records, LLC, the one from last year from an early concert in this tour and the one that just came yesterday from a concert they did last month. Once again, I can't say enough positive things about that organization. They really want to make this experience a positive one for everyone and really will work with families to do whatever they can to help.

Also, since Simon won't allow us to put headphones on over his ears, someone suggested that we try just covering his ears with our hands. So, we've been making that a game. He loves it when he's making a sound and I do that to change what he hears. I'm trying to get him used to it, especially when he's upset to see if I can use that to redirect him if he becomes overstimulated by everything happening around him in the concert hall. Also, I'm going to keep him out of the auditorium until the last possible minute so he won't be "turned off" by something that isn't the band's performance. I think that was the "kiss of death" last time. And, once we lose him, getting him back is very difficult to impossible.

But I think we're getting close to ready. And I'm really excited. Rachel has a new outfit to wear, and she's going to look like such a princess. I have to pick up something nice for the boys to wear (what a horror -- Mommy shopping for cute clothes for her kids).

Keep an eye out -- I will report how it went and whether these methods of preparation are worth while, at least for our Simon.

When is it.....

....autism and when is it just normal development? As a parent of autistic children, that's a question that I face all the time. Every time one of the twins start displaying new behaviors, is it because of the autism? Is it a regression? Is it something that I need to discuss with their teachers? Is it something that requires significant intervention? Or is it simply being a 4-year old child? This becomes even more difficult when the new behavior is typically associated with "autism", even if it's not uncommon in neurotypical children.

Aggression is probably the hardest of these for me to face. Rachel has, for several weeks now, been displaying increased aggression. These displays started as actions directed at herself (Self-Injurious Behaviors) and now they are extending to her classmates/teachers/siblings. What I've been seeing towards her brothers have been more of a play-like behavior -- she's been tackling them and refusing to get up once she sits on her older brother. This is all done with a smile of triumph on her face. She doesn't see that she's causing Daniel discomfort, and more often than not, Daniel deserves something. I wasn't really thinking of these behaviors as a bad thing -- just her version of playing, and perhaps taking things a bit too far (which we've been working on). Daniel is a very physical boy and he tends to bump his brother and sister and he's been known to tackle the two of them -- turn-around is fair play, right?

But now I'm hearing complaints about her behavior at school. She's poking her friends and teachers. She's hitting. She's making inappropriate comments (in a self-soothing, stimming way). I'm going to meet with her teacher and a representative from the Autism Office tomorrow to go over the data they've collected and work on a action plan strategy to correct these behaviors.

These behaviors had started towards the end of last month -- I wrote a post about the "Self Injurious Behaviors" here. Since then, I've taken her to the pediatrician (normal well-child check-up, nothing relating to these behaviors) and brought these up. I asked her if she felt that this was related to autism or just normal development. Her response was that, until proven otherwise, I should ALWAYS consider any changes in hers (and Simon's) behavior to be normal development. We just need to approach it in an "autism" way (since that's how they learn and respond).

I need to remember that. For now, Rachel's new behavior is NOT autism -- just normal development and learning (but we still need to correct it).

But it doesn't stop me from thinking.....

Everywhere I go.....

...I see signs of another family affected by autism. For example, this afternoon I was walking down the hill to pick Daniel up from school (had Simon in the stroller [which is considerably too small for him]), and a woman was unloading groceries from her car. On the back of the car was a magnet -- a blue puzzle piece with the "Autism Speaks" logo. I've seen this car before and considered asking the owner if they were personally affected or just supportive. Today, I had the chance to speak with her, and sure enough, her son is on the spectrum (currently school age). Yet another reminder that autism is EVERYWHERE.

That statement seems to be especially true in this area (outside of Washington, DC). I don't know if it's because it's so densely populated around here or if this area exemplifies the demographics most affected. But I remember being told that there are new local screenings constantly. I know the incidence rate, and it's staggering. For some reason, today that's affecting me.

A bill has been introduced (last week) to the Maryland House requiring insurance to no longer exclude autism from coverage. We've been lucky -- testing was covered for our family and our visit to specialists have been covered as a "specialist visit". But we know that many cannot say the same, and that doesn't even talk about those who aren't insured at all. If you are from the State of Maryland, I urge you to contact your representative to show your support for this bill and help this pass quickly (Autism Votes). Also, please feel free to spread the word.....

Nicknames and Mascots

I alluded to, in the twins' birthday post, that all 3 of my kids had their own mascots and that one day I would write the stories of how we came up with those. 2 of them are amusing. 1 is just basic and simple.

Let's start with that one -- Daniel. Daniel's mascot is a lion, mainly because of the bible story of Daniel and the Lion's Den. This was pre-set for him before he was even born. No imagination. Nothing that would lead us to come up with it for a mascot. Just plain, basic, and the way it is. And he has embraced his mascot. He loves to think of himself as the lion. He loves his lion Pillow Pet. And he is satisfied.

The twins each have a story behind their animals.

Let's start with Rachel. The twins were born 6 weeks early and consequently spent 11 days in the NICU. I didn't get to touch them until the next day. The afternoon on Saturday, January 13 (when they were just shy of 1 day old), I was holding Rachel and enjoying the moment. Rachel, however, was NOT enjoying the moment. She was crying. Screaming. Showing the world her personality, even at such a young age. Kevin came in and was looking around trying to figure out who let in the "Alley Cat". When I pointed out to him that he was referring to HIS DAUGHTER, he looked at her and ever since then has called her "Kitty" or "Kitty-Kat" when wanting to use a nickname for her. So, from that point forward, her mascot was a kitty-cat.

Simon didn't do anything to give himself a mascot, but his parents did. When we were trying to decide on a name for him, we didn't know what to choose. We knew we wanted to name him after my grandfather who had passed away just before I learned I was pregnant with them and his name was Samuel. But Kevin had a nephew named Samuel already -- the name was taken and that was no longer an option. But we had already established a precedent of using the first letter of the name (Daniel was named for Kevin's grandfather, Dale). So we considered "S" names and found Simon and agreed on that pretty quickly. But we still had to come up with a middle name. After a while, we still couldn't agree on one, so we went back to my grandfather's name. His middle name was a "J" name, so we started thinking of this and decided to use the same middle name as my grandfather. So, Simon's name would be "Simon James". Unfortunately, I remembered incorrectly. My grandfather's middle name was not James, but Joseph (my NEPHEW'S middle name is James [the Samuel I mentioned]). So why did the name "Simon James" seem so natural to both of us? We figured that out when Simon was about a month old. We were listening to a Sandra Boynton album (Philadelphia Chickens) and, in the song "15 Animals", as the last line was sung ("....and my turtle, Simon James Alexander Ragsdale the Third") Kevin and I stared at each other. WE HAD NAMED OUR SON AFTER A TURTLE!!!!!! So, Simon's mascot became a turtle, and we renamed his teddy bear "Alexander Ragsdale". I suppose, given we live in Maryland, having a mascot of a turtle is a good thing -- UMaryland's mascot is the Terrapin.....

A Different Perspective

Before beginning this post, I need to bring up a couple of qualifiers. Kevin found an article on one of his preferred websites, FreeRepublic.com (we don't see eye to eye politically, but he finds some interesting stuff here) that he brought to my attention. I planned to read this posting, but never got around to it and now neither he nor I can find it. Therefore, I can't specifically tell you what was said or whether there was a referral to a more accepted scientific journal or otherwise to provide more of an explanation. And, again, since I never read the article, I can't tell you whether I agree with the way things are presented. But I've been thinking about it on and off since he told me about it about 1-2 months ago. I just wish I could have found the original article, both to actually read what it says and to provide a link here. Kevin did say that he remembered that it was the perspective of this one member who pointed out that they WEREN'T an expert and didn't remember any links with supporting documentation. (boy, that's a lot of bunk, but it's the truth)

This posting talked about autism as, not a disability, but as an evolutionary step forward. When he first mentioned this, I was extremely skeptical, but as I said, I've been thinking about this a lot, and find it a very interesting viewpoint (regardless of whether it's true or not). When one thinks about many of the brilliant and revolutionary minds in human history, many of them are now thought to have been autistic (W.A. Mozart, A. Einstein, V. VanGogh, etc.). These "savants" were very one-sided -- they excelled in one area and were mediocre in others. History has proven their brilliance.

Per dictionary.com, the word "Savant" means a person of profound or extensive learning; learned scholar (savant). Whenever I think about examples of savants, there seems to be evidence that they are/were autistic. Is there something there?

We see similar behaviors in many autistic children. There is often an area where they excel. Their academic experience and success is very one-sided, often (but not always) towards math/sciences or the arts. And there are many adults who can say the same (whether or not they were ever diagnosed to be anywhere on the spectrum, either as children or as adults). Is this a sign that we are destined in the next thousand years to become more "specialists" rather than the "generalists" we have the expectation for today?

I'm not trying to say that we need to stop working with these kids and push their differences -- to the contrary, these kids need the help to be functional members of our society in order to survive and be happy. But these kids ARE special. As Mom to 2 of them, I know this for a fact. I love to watch all 3 of my children grow and appreciate the milestones that each of them reach. I'm just understanding that for some kids, some things are more of an achievement than they are to others. I try to celebrate all 3 of my brilliant kids because of who they individually are. Every day.

Yup....it's on....again.....

.....We're doing it. I jumped in yesterday and now we're just in the waiting game. I bought 5 tickets to the Laurie Berkner Band concert in Washington, DC on March 6. I remember what it was like in May. I remember the screams. I remember the fights. I remember the disappointment that, despite spending so much time to get this to work, we just weren't particularly successful. But I'm still doing it again.

I know this is something Simon should enjoy. He loves music in general, and this band in particular. When we gave him the DVD for Hanukkah (Let's Hear It For The Laurie Berkner Band), the smile was literally spread from ear to ear. If his lips would have stretched far enough, it would have covered the face of the earth, he was so happy to receive this gift from us. He learns every song that they sing. He learns the "dances" on the DVDs. He sings along with every song and randomly starts singing them at his leisure. He watches YouTube videos of "Move To The Music" videos that feature them and is disappointed when a "Move to the Music" begins and it's something else.

But something happens when he sees them perform live (or any other live performance for that matter). Something snaps. I'm not sure if it's a memory of previous experiences (and we know he has a VERY LOOOOOONG memory) or if it's fear of the moment. Last time, it started when the microphone turned on and a representative of a charity thanked the audience for their many contributions. We anticipate something similar will happen this time. Consequently, I checked with the theater and they are basically relaxing all standard concert rules -- kids can stand, dance, come and go as they need. So, this time, instead of just sitting in our seats from the moment we arrive until the concert starts, we're going to get settled and someone will take Simon out until the band is ready to start playing so his first exposure to activity on the stage will be the band playing "Victor Vito" (one of Simon's favorite songs and the first song of the concert per the set list provided to me yesterday by my contact at Two Tomatoes, LLC [yes, I've already been in contact with her]).

This time, I got tickets on the aisle, and we're right on the center aisle in the balcony. I also tried to get seats as far forward as possible (per a great suggestion of someone I know and trust). I did get seats as far forward as I could, but the tickets have been on sale for quite some time, and we aren't as far forward as I had hoped. My fault -- I kept putting off getting the tickets and we are a family of 5. Getting 5 seats together, on the aisle can be a bit difficult. This was the best I could get.

So, hopefully, this time it will go smoother. We have a lot of work to do though. But we'll be able to ascertain how much growth there has been in the previous 10 months. I know he's made significant improvements. This is going to be a good measure on how this particular area has improved (positive thinking).