Thursday, March 24, 2011

Time for a reality check

This morning, I spent a brief time talking with the kindergarten teacher in the special education program in our local home school. The purpose of this meeting was to sit down with her and ask what was needed for children to be considered ready to enter this program. This is the highest level of special education at this level prior to mainstreaming as I understand the system to work. And I have the advantage of one of the locations being in my own home school (translation, I could potentially have all 3 of my children in the same school).

When I went into this meeting, I was hoping (and reaching) that Rachel would be ready for a mainstream classroom setting when she entered kindergarten and I would work with Simon to get him ready for this program. However, as is often the case when talking about Rachel, it became clear to me the longer I spoke with the teacher that I may be expecting too much from her.

This teacher pointed out some of the key differences between her classroom and the typical classrooms. They are working on the same curriculum as the neurotypical classrooms. However, they don't have "centers" because these children typically not capable of working independently. Circle time, as a consequence is much longer. But it doesn't start that way -- they work up to it. She also works with the kids more on comprehension skills rather than on simple reading, and works with them to understand how to read pictures and faces, as many autistic individuals don't naturally develop these skills. She also really pushes some basic life skills on a daily basis, like counting money and the growing the ability to describe things (for example, this is a square because it has 4 sides that are all the same). Many of these kids can see these things, but can't do anything with them. They can see a square, and they know it's a square, but they can't explain WHY it's a square. By teaching them to think like that, it will help them in the later grades. Memorization isn't enough for long-term learning and this classroom works on giving these children these skills.

She also explained that she has had students who have spent some time in the mainstream classrooms if they are able to go in there independently. There are no paras in the classrooms with autistic students to help them through the day and help to keep them on point. If they need that level of support, they cannot be in the mainstream classrooms. She has sent children into the other classrooms for writing workshops most consistently. They also share specials time (gym, art, music, media, computer lab) time with their neurotypical peers as well as lunch and recess. So, they aren't completely isolated.

But because the curriculum is the same, there is no fear that these children are falling further behind long-term. Perhaps that will be a good thing for Rachel. We know it would be a good thing for Simon.

I am going to continue to strive to prepare Rachel for the possibility of mainstreaming and for the possibility of Simon entering this classroom. However, the reality is I may be enrolling them both in this classroom or sending Simon to another program. I understand that. And I am prepared for that possibility. But I have to be prepared for the real likelihood that Rachel may not be ready. I probably should start planning for the desired result of them both being placed in this special education classroom. At least then, they'll be together.

Monday, March 21, 2011

Fast and Slow

There is a Laurie Berkner Band song called "Fast and Slow". This was released on their album Rocketship Run, but we weren't introduced to the song until it appeared (with video and animation) in the 2009 Noggin (now NickJr) special "Let's Hear it for the Laurie Berkner Band". Since then it's become a favorite.

This is a DVD that we bought for Hanukkah for Simon (officially -- there were 3 DVDs and they were each opened by a child, but all of them were for all 3 kids). When we first got it, the kids would watch it regularly. But lately, we've only been pulling it out when Dad and Daniel aren't home (basketball or baseball practice). So, no surprise last Tuesday when I put it in the DVD player and we started watching it during "run-around time".

In general, it was normal Laurie run-around time. They would come and go, sometimes watching it and sometimes not (not consistent for songs [except "Victor Vito" -- they ALWAYS watch that one]) and I was glimpsing moments of enjoyment in both the video and their activities and antics. The last song on the DVD is "Fast and Slow", and it's done as an "ENCORE" which they entice the children listening to call for. At this point on this particular Tuesday night, they were tired and just sat down and started playing quietly. So for the first time, I really got to listen to the song and the lyrics. Now, I already know the song by heart and am very familiar with the lyrics, but something was different that night. I really HEARD them. I think for the first time.

"You don't want to go slow, you go fast.
And you may find your missing the world you go past.
Crickets singing their sound.
Golden leaves on the ground.
You may find something new that you wouldn't have found if you never went slow only fast.

So won't you slow down and wait for me.
Take it slow, take it slow, take it slow.
Come on slow down.
We can share all the new things we see
When we're slow,
Here we go,
Together we're slow."

I'm an "Autism Mom". My children need me to go slow so they can process the world around them. My instinct is still to be the rabbit and rush through things. But every time I slow down and explore the world through my children's eyes, I learn something special. I see something new, just like noticing the words in this song (which I knew but never really considered). I know it wasn't written about an "Autism Mom", but it speaks directly to me. Moments need to be embraced and cherished. Catch every detail. Moments disappear, and then they can't come back. I'm honored to be a part of their world and experience this through them.

Thursday, March 17, 2011

Daniel Saved Me

Where would I be right now if I didn't have Daniel in my life 2 years ago? What did I do to deserve that (at the time) nearly 4-year old child? And how did he know what I needed him to do to keep me going at what was probably one of the hardest times of my life?

A few days ago (March 12) marked the 2nd anniversary of our entry into the Autism World. I had already been thinking that the problems we had been seeing with Simon were related to autism, even though I don't think I ever said this out loud or even thought about it in these terms. Rachel, however, I was completely clueless. But I remember sitting in the developmental pediatrician's office after she finished interviewing me and observing the twins for a while and her dropping the bomb that, yes, they were both "on the spectrum". I remember just feeling like my world had just ended. I remember having to remind myself to inhale and exhale. I didn't know what to ask. I didn't know what to say. I focused on Rachel. "Alright," I told her. "Simon I understand. But Rachel? Where does that come from?" And I sat there while she explained it all. And I just nodded and agreed with what she was saying, but I don't think I heard a word of it. Then we as a family piled into our full-size SUV and drove from our Maryland home to Walt Disney World for a week-long vacation that we had been planning for months. Because what else is a parent to do once they learn their children are "on the spectrum"? Why, WE'RE GOING TO DISNEY WORLD!

So, how did Daniel save me? When we got back from that trip, our new lives had begun. We had our evaluations by the school's early intervention service organization (MCITP). We agreed to a plan or course of action of what we would do to help each of them. I'm still sitting there in a bit of a fog, trying to digest everything that's happening. Then Daniel comes in. He's just turned 4. He has nursery school 2 days a week. He takes gymnastics one morning a week. He's in a playgroup that meets weekly. He's friends with other kids in MOMS Club that he wants to be with. He needs to go to the park to play. He needs to be busy or he gets into all sorts of trouble. He's a social butterfly. He needs to be with his peers. And since he needed this, I gave it to him.

I had no choice. Daniel is my son, just as much as Simon is. So I would take him to preschool. I would go to playgroups. We would do the Park Playdates with MOMS Club. We would go to gymnastics class. His life stayed pretty much the same as it was prior to March 12, 2009. And that's how he saved me.

I keep hearing about how people retreat into themselves when they learn of their child's diagnosis, actual or provisional. They focus on treating autism. They focus on getting kids to various therapies. They focus on the schedule of all of the appointments that parents of children on the spectrum are expected to incorporate into their daily life. They don't spend time with their friends because (1) they don't have the time and (2) it really becomes painful to see other children without these challenges achieving these things so easily that our children have to work so hard to even start to mimic. Their isolation grows. Before long, they lose their identity completely.

I had Daniel. I couldn't afford to isolate myself. He needed me to keep his social life going. And he needed a social life. He needs friends. He needs life to be "normal". And I focused on giving that to him as well as trying to do everything I could for Rachel and Simon. There were days where it felt impossible. There were days (many of them in fact) where I was completely overwhelmed by it all. But I had to focus on my kids needs. ALL of them. Daniel isn't directly affected by autism. He shouldn't be made to suffer because autism has taken over everything else. I made a promise both to myself and to him.

And I have worked hard to be sure that I keep that promise. I'm not going to say that I've done it 100%. But because of Daniel's needs, I was able to keep a portion of my sanity alive. I didn't fully retreat into the autism world. It definitely affects everything I do. And there isn't a single day since March 12, 2009 that autism hasn't reared it's ugly head. But, thanks to Daniel, I can hold onto something that autism hasn't taken over completely. I can be a human being and not just an "Autism Mom". I can continue to be ME, even though I have been drastically changed because of my experience.

Tuesday, March 15, 2011

A really warped perspective

Just a quick word tonight. I was having coffee with a friend this morning and we were talking about the twins. I mentioned to her that they've really started fighting lately, specifically over the computer. And I'm happy about it. And she basically gave me a "High-5".

What is wrong with this picture? As parents of multiple children (not necessarily multiples), we all dread sibling rivalry. We all want our children to get along and hate it when they fight. So, why do I rejoice in these things? I was warned both when I was pregnant with the twins and when they were very young by other MoMs (Moms of Multiples) how terrible fighting between twins can be. They are truly each other's best friends and worst enemies. And since they are so intimately familiar with each other, they know just how to strike to deal the worst damage. But we hadn't seen any of that. And they're 4 years old. Suddenly, we are seeing that.

So why am I so happy about this? Very easy. IT'S NORMAL BEHAVIOR!!!!! And yes, I'm using the "N" word here. I love to see the interactions between these two, positive AND negative. I love to watch the relationship grow in the many ways that it does on a regular basis. And now that Simon has figured out how to use the mouse and control what the computer is doing, he wants to play as much as his sister.

We are working on turn-taking. We are working on getting them to NOT throw each other off the chair (which is a common practice by Simon right now). We are working on them sharing computer time when they want to play the same things. We're working on Simon NOT boxing Rachel away from the mouse and the keyboard. We're working on Simon not pulling Rachel's hair to get closer to the computer and use his advantage. We're working on Rachel not sneaking her way onto the computer when it's Simon's turn. But we're not there yet. And thus far we have seen little to no progress. But we know it will come with perseverance.

Right now, I'm reveling in the fact that my children exhibit behavior that isn't defined by autism, but behavior that is a consequence of being a sibling (and a twin), and is considered perfectly normal and predictable. We just need to shape it a bit better.

Tuesday, March 8, 2011

Laurie Berkner Concert, Part 2

After asking you to wait for the pictures, I'm hate to admit that I wasn't able to PhotoShop any of the pictures we took during the concert to anything usable for this blog, so I probably could have included them in the original post. But, if you read to the end, you'll see the benefit of waiting.

So, here are the pictures. I hope you enjoy it, because I had fun taking them and seeing my children embrace the experience.

Photobucket Photobucket
After everyone is dressed, we need to take pictures. Daniel is "helping" by holding Rachel in place so I can snap a picture showing off her new "tap shoes". Simon and Rachel start dancing to get in the spirit of the day.

This was our attempt at tagging the twins (Daniel had something similar in his pocket) -- I tried to tape these to Rachel's and Simon's back (the differences between the two are obvious). Unfortunately, they weren't adhering well and they would each reach behind them to remove them, so it didn't work.

But I would recommend ANYONE going to a crowded place with autistic children to somehow "tag" them. If kids get lost, they can panic. Autistic kids often can't express themselves effectively when panic strikes, even if they can under normal circumstances. This way, they don't have to. Their "tag" does it for them. You can use temporary tattoos, military style dog tags, whatever. These are not difficult to find online. But it definitely gives caregivers a peace of mind knowing that others can help if the kids get lost.

Photobucket Photobucket Photobucket
Simon, Rachel and Daniel, during the concert. As soon as the concert started, Simon assumes "the position", with his hands over his ears. But he's not crying or complaining. This is all right for now.

Photobucket Photobucket
Then, as things get going, they start to get a bit more comfortable. Simon even takes one hand off his ear. He's still not sure what to make of it all. Rachel's just excited.

Photobucket Photobucket
Then Rachel with a lobster on her head and Daniel with Zebra on his head (during "Pig On Her Head"). This is when Simon lost the hands over the ears as he held his bunny. Unfortunately, these are the only (and best) shots that I have of them that are viewable (and some of them I would BARELY call viewable). The theater (especially the back of the balcony where we were sitting) really was too dark for the camera without a flash (which isn't available on the iPhone 3Gs) and it was just too dark for PhotoShop to fix.

Photobucket Photobucket Photobucket
Daniel and Rachel approach the band (Laurie first) after the concert. They both gave her a big hug. Then Simon went up to her and started requesting songs. She obliged him by starting to sing the song he requested (3 in particular) before, after one line from each, he would ask for a different song. He definitely has a sense of humor, my Simon. The last picture, Daniel is actually present on Laurie's right (but I accidentally cut him out of the picture in my haste of getting a picture of the band), and Rachel and Simon are sitting on the laps of the other band members; Adam Bernstein (bass), Bobby Golden (drums), Susie Lampert (keyboards).

All 3 kids got "shaky eggs". This one is Daniel's (obviously).

And, for those of you who were waiting for the pictures, I have a surprise for you. Here's my Rachel with her version of "I Know A Chicken" that she decided to perform for me on Monday morning.

Thanks so much for reading about us, and for all the suggestions people gave us, both in direct response to my blog posts and to my many postings on Facebook. It was a wonderful day and now we're over a hurdle. We just have to be sure to reinforce this.

Sunday, March 6, 2011

Laurie Berkner Concert, Part 1

This post is just the narrative, without the photos. I will try to clean the photos up and post them tomorrow or in the very near future (the camera phone doesn't have a flash and the pictures are currently too dark -- I'm going to try to do some work with them in Photoshop).

The day started dangerously. The twins were up way too early (pre-5am). That means they (and Dad and I) were going to be tired early. But that's what we had to work with. Then we realized we couldn't find the leashes (oops, I mean harnesses) to keep them with us and prevent them from getting lost in a crowd. I thought to put signs on their backs, but they always managed to pull them off, so that wasn't going to work. So, we just had to hope.

We got in the car just a little later than we planned and found street parking a block away from the theater (translation, our luck is changing). Rachel fell asleep on the 45 minute drive and we allowed her to rest a little more (since she was up so early), then we gave everyone a small snack and headed to the theater (in the rain). Rachel was having so much fun in her "tap shoes" (new patten leather shoes). I go to the Will Call window and pick up our backstage passes, but the person at the ticket counter was confused -- it was just one piece of paper -- I explained that's all I needed, took the envelope and went to find the rest of the family. The kids were getting excited and restless. We found our tickets, headed to our seats to get settled in, and I pulled out the phone and started showing the twins videos to get them comfortable. A couple of Barefoot Books (Animal Boogie, Driving My Tractor) and a couple of Phineas and Ferb musical numbers, and the band comes on stage.

Simon covers his ears, but is quiet. The music is starting. Rachel and Daniel are standing and jumping up and down. The song is "Victor Vito". I start playing a game with Simon that we play in the car when this song comes on, and he starts to smile (but the hands stay up), with me turning my head back and forth with the responsive nature of the chorus. He's getting into it. He's watching me, rather than the stage, but we'll take it. When the song ends, he's into the concert. The next song doesn't really interest him, but again, he's NOT upset. But he keeps the hands up. The 3rd song, we notice he's watching the band on the stage. Then the 4th song is "Pig On Her Head". We pull out the stuffed animals we brought with us (Daniel already had Zebra and we had a lobster for Rachel and a bunny for Simon). That was the turning point. Simon couldn't hold the bunny AND keep his hands on his ears. Which one would he choose? He chose to HOLD THE BUNNY!!!!!!!! From then on, he was truly able to enjoy the show.

The funny part -- RACHEL was more of the problem. Every once in a while, a song would come up that she had no interest in listening to and she would start complaining and want to go wandering. Eventually, we allowed her to walk around the auditorium a bit and she ended up standing next to the stage for a brief period towards the end of the show. But she was a bit bipolar throughout the performance. When she was enjoying it, she was the happiest person there. But when something wasn't going the way SHE wanted it to, it was the end of the world.

After the performance, we waited to meet with the band. We waited with 5 other families and we were assigned an order to see the band. They came out onto the stage and sat there spending time with each family in turn. They signed photos, DVD covers, and a songbook for us. Rachel and Daniel each gave Laurie a HUGE hug. I mentioned that Simon enjoys singing her songs and she started singing some of her songs, just for him. We started with Moon Moon Moon, then Simon announced Victor Vito. So, she started singing Victor Vito. Then he said I'm Going to Catch You. She engaged him for a little while before Rachel's impatience was overriding our need to stick around. So, we got a couple of pictures, thanked them for everything, found my contact at Two Tomatoes, LLC to thank her again for all her help, and headed home.

Overall it was a great day, and such a HUGE success, especially compared with the same concert in Baltimore on May 1, 2010. YAY PROGRESS!!!!!

Friday, March 4, 2011

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.

Tuesday, March 1, 2011

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.