Monday, April 26, 2010

Meeting with Simon's School

Well, this morning, I met with several members of Simon's team to discuss his progress and try to figure out what's been happening with him over the last couple of months. It was myself, his teacher (the long-term substitute that he started the program with and then resumed when his new "permanent" teacher was let go), the education coordinator and then the administrator for the program joined in a bit later (she was out of the office until after the meeting was ongoing, but I knew that would be the case). The only thing I can say at this point is at least now his team is aware that I have concerns.

I'm not really sure what happened. I went into this meeting prepared to talk about it all. I wasn't going to bring up the questions of his placement, but just really try to understand what's going on since I'm not seeing too much positive changes at home or outside of school, despite seeing a HUGE change early on. But sitting there, I just couldn't say much of anything. I let them tell me all the positive changes that have happened since he began and what he's doing now that he wasn't before (and it's an impressive list), but much of this I just don't see myself.

When the administrator arrived, she read between the lines in the email I sent her recognizing that I AM starting to question Simon's placement (saving me the need to bring up CAPP). She informed me that they are doing some ABA with these kids and they are going to do a bit more with Simon to determine if he does respond better to those techniques than was originally anticipated to help determine if changing programs may be a wise course of action. But she really seemed to think that his placement is correct. I respect her opinion -- I respect it a LOT! Reputations are earned, and everything I've heard about this woman as well as seen with my own eyes tells me that she really does care about the kids under her care, and she is a VERY good judge of what programs are best for these kids. Even with her program in jeopardy, I really don't think she would sacrifice one of the kids there just to help keep it going. She is also going to ask the representative from the special ed program for the county schools, who comes to MPAC periodically, to observe him and to give HER recommendations.

But, to try and address the immediate problems, it seems like we just need to figure out how to get Simon to generalize what he's doing at school to another setting (home, gym, general community, etc.). In order to accomplish this, we're going to have a home visit next week (with both his teacher and the education coordinator, who I've been working with from the beginning) to teach me how to keep his "school routine" going at home.

I just wish I would have been able to tell them everything that has been running through my mind over the last couple of weeks. I'm not helping Simon by keeping silent. I was recently reminded that we went through something similar with MCITP after we had been with them for a few months However, changing programs isn't necessarily the solution. We have to figure out how to make things work while not forgetting about everything else.

I wish I could live in Simon's mind, for just a short time; that way I could see the world through his eyes. Maybe then, I could understand him a little more.

Right now, it feels like all of this is happening in my own mind -- just like the relationship between Rachel and Simon that doesn't come out often and I'm one of the only one who recognizes those moments, it feels like I'm the only one who's seeing this backslide. Kevin keeps pointing out that Rachel's progress is beyond remarkable and we can't hold Simon to those standard his twin has set. And I'm NOT (I think). But he's getting more and more violent with us and now he's not participating with the group in other settings, other than school, something that he HAD been doing in the past. I KNOW WE HAVE A PROBLEM. I just wish I knew how to fix it.

Saturday, April 24, 2010

Closing Gaps and Introducing New Ones

Things kinda got a bit nuts around here lately -- started talking about one thing and then life got in the way before I could finish, so I never finished stories that have started. So, I'm going to try to bring things more up to date.

Let's start with the dog. I mentioned earlier that we had filled out paperwork to bring home "Minnie". Well, she came home on April 11 and has been renamed Domino (as in the game since she's black with splashes of white, mainly on her underside). It's been nearly 2 weeks now, and the adjustment is still ongoing. She's a nearly year-old black lab/pitt mix, but her temperment is nearly all adult lab, with some minor exceptions. She is great with me and Kevin. She's doing better and better with Daniel, as we are having Daniel give her more of her food now that he's starting to get more comfortable (but she does jump on him occasionally). We are still working on introducing Domino to both Rachel and Simon. Thus far, she's a little too rough for them. They both seem to enjoy seeing her, but when she's out of her crate, she's a bit too jumpy for them and they both get a bit frightened. She also reacts poorly to them screaming, and being autistic, their screaming is a common occurrence. I also think that Domino is trying to make sure she's higher in the "pecking order" than either of the twins. We are sending a message that her assumption is false. Whenever the twins are around, Domino is either in her crate or on a very short leash. Things are starting to get a bit better now. Also, Domino seems to dislike other dogs. We are going through puppy training to get her socialized so that she won't have these problems over time. We've only had one session thus far, and it went all right (for the most part). Our next one is tomorrow. I've been practicing with her, so hopefully things tomorrow will be smoother than the first week.

Simon and school is a much more complicated situation. I did send an email to both MCITP to try to remind myself why CAPP was not felt a good option for him at the time of his initial IEP meeting and to MPAC asking for some general advice. I have a meeting next week with the administrator to discuss how Simon is really doing and then I can try to bring up my specific concerns. I'm not really sure whether I'm going to bring up CAPP or not -- I probably should to get her take on things since she used to administer the CAPP program as well. But I'll have to see how things are going during that meeting. I know I'm going to bring up the flux of teachers (specifically losing the teacher who he bonded with, even though all the notes to date say that he's not missing her) and how, despite seeming to take so well to the program at first, is backsliding. We saw this at MCITP as well and things really didn't get better until he transferred to MPAC after his birthday. I don't know what we should do about it this time and what we can do to fix the situation.

I hope there aren't other unfinished situations on here. If I notice any, I'll try to close them out as well.

Thursday, April 22, 2010

I LOVE THE LAURIE BERKNER BAND (and Two Tomatoes Records, LLC)

On March 10, I wrote a post about taking Rachel and Simon to see the Circus of the Senses put on by the Big Apple Circus. At the end of that post, I mentioned that I was considering taking the 2 of them to see the Laurie Berkner Band concert in Baltimore on May 1. Well, being the crazy person that I am, I decided that we should definitely try to go to this concert figuring we had approximately 6 weeks to prepare Simon for the experience, and unlike the circus, Kevin would be coming with me (as well as Daniel) and if there were problems, we'd have 2 adults (with 3 kids) that could work together to address whatever was to happen.

What the circus proved to me is that Simon's ability to sit through a show hasn't changed over the last year. Not much of a surprise -- we hadn't done anything to make it any better -- but the experience proved that fact to me. So, I started planning out how to prepare him for this concert. Unlike Circus of the Senses, this was not a free concert and we, as a family, would be driving up to Baltimore for the experience, which, although it isn't far, does mean making a bit of a trek. I wanted the experience to be a positive one, for everyone. So, I asked his school (as well as others locally) for some ideas. I started thinking through some social stories since I've seen him respond to those in the past. I also started doing a bit of research on Rachel's and Simon's favorite music artist. And I contacted the Pier 6 Pavilion in Baltimore and ordered 5 tickets on the aisle.

One of the things my research led to was me sporadically reading The Laurie Berkner Band blog ( where it mentioned the band sometimes does a meet-n-greet with special needs fans after the shows. That gave me the idea of contacting Two Tomatoes Records, LLC and asking them who would be eligible for that special meeting. That was probably the smartest decision I've EVER made in my life. I have been corresponding with a member of their staff (over email) since mid-March and she has been UNBELIEVABLY helpful in providing me with information to prepare Simon for this concert. She has not only set us up for a meeting with the band after the show (which was my original intent of that email), but has provided us with a set list for the concert (so we can prepare specific songs) and has sent me some video from another show on the current tour allowing Simon to become familiar with the appearances of the sets, the idea of the spotlights, the noises of a theater, etc. I had already been finding some video clips on YouTube from other concerts to show all 3 kids, but those are all with different sets and are of varying levels of quality.

I don't know how this concert is going to go on May 1. But I do know that I am doing everything in my power to prepare Simon for the experience and I truly hope he enjoys it as much as he possibly can. I'm still prepared to have to take him out of the auditorium for periods of time to recharge a bit, and hope that there is a lobby that we can continue to hear the music (muted). But I knew this when I bought the tickets (which is why I specifically got the tickets on the aisle directly from the theater rather than ordering them online) and am prepared for that eventuality.

So THANK YOU TWO TOMATOES RECORDS, LLC for all of your input and advice!!!!! My children's taste in music will likely change over time, but their mother will NEVER forget all the help you have been, going far above and beyond expectations.

Friday, April 16, 2010

I've Been Made a "Guest Blogger" on another's Blog!

To me, this is just such a cool thing. I'm not really a writer and am amazed how much I'm getting out of this blog. But I still think it's really neat that someone else wanted ME to write an article for their blog, and then ACTUALLY published it!!!!! Feel free to check it out -- it's about our trip last year to Disney World.

Thursday, April 15, 2010

Another Getting Off My Chest "Thing"

Yes, another. My parents were visiting this past weekend and now I've got a thought running through my head that really shouldn't be there. Or maybe it should, but needs to be better defined. Or maybe it just needs to be developed into something more tangible. I don't know. But maybe if I put it here, eventually I'll understand it all or know what I should do......probably not today, but in a few more days or weeks when things get to whatever that point is......

This is the first time that my parents (or my in-laws, for that matter) didn't notice a significant positive change between visits in both Rachel and Simon since we've learned that they had significant developmental delays (predating an "autism diagnosis"). Maybe this is because we saw them only about 5 weeks before and there hadn't been much time (usually visits are about 3 months apart). They did see it in Rachel, but were questioning me about Simon's progress. I pointed out to them that, just like I tend to, they were comparing them to each other, which leads one to think that Simon is failing to achieve since Rachel excels so well in her development right now. But am I really sure about that?

Rachel and Simon are 2 different children. They are twins, yes, but their similarities pretty much end with sharing a birthday and a diagnosis. They respond differently to their environment and require different techniques to deal with their autistic behaviors. Or do they?

I think that's my current question. I've mentioned many times that Simon isn't making the same progress as his sister. Where she is rapidly becoming more and more outgoing and talkative, Simon is still happiest when isolated and left alone. He doesn't seem to be bothered by his lack of successful communication with the world around him. Give him books and puzzles, and he's most happy. Would he have been better if he was placed in CAPP rather than MPAC? I've been told that he didn't respond to the ABA like Rachel, but what exactly did that mean? Since it's a slightly different technique, was that an accurate comparison?

I woke up this morning thinking this question. But I'm not sure how to proceed. Am I just doing what I always do and making that comparison myself and Simon really is doing just fine? Or do I need to go back and determine why we didn't want to see him in CAPP and address issues there? Should I contact MPAC or should I wait until I know what it is that I'm thinking? If so, should I go directly to the director there or continue working with the education coordinator who I've been working with since we started? Do we need to request another IEP meeting? Or is this lack of progress (currently) a consequence of the flux of his teachers changing? Again, I just don't know.

All right -- this hasn't done me any good right about now. But maybe as I think these things through, I'll come back to this post and I'll be ready to answer these questions.

Monday, April 5, 2010

Dog Adoption

Well, we've now officially done it -- yesterday, we signed the paperwork to adopt an adorable and beautiful black lab, currently named Minnie (actual name still under discussion, but we're narrowing it down). Daniel is TOTALLY in love with her (as am I). Kevin is happy that this process is over, but I really can't read his emotions about the dog. Rachel and Simon aren't really sure what to make of it all.

I've been watching this dog for a while on After being approved for adoption late last week, we first met her (face to face) on Saturday in the park. I had already fallen in love with her picture, but that picture didn't do her justice. She's just a beautiful dog. Daniel also was fascinated by her. Kevin was pleased about how gentle she is. Simon avoided her and Rachel was just very curious.

I'm not sure if Rachel was just curious about what held my attention, or if she was actually interested in the dog. She just kept coming up the hill to take a look at her and "Minnie" was very gentle around her. She approached Rachel very slowly, almost understanding that Rachel wasn't sure what to make of this new creature that she recognized as "Dog (woof woof)", but I don't think Rachel could quite wrap her mind around what that really meant. But she did eventually let Minnie nuzzle her a little bit.

Simon was a bigger concern. He just simply ignored her. Kevin would try to coax him over. Eventually, at snack time, Simon's desire to have some goldfish outweighed his apprehension and he came over to where Minnie was (on his own). He even patted her on her back. Minnie, again recognizing that Simon was apprehensive, just sat there patiently and let him approach her in his own way and time.

When this meeting was over, I KNEW that "Minnie" was the dog for us.

Yesterday, I once again met with the woman fostering her, and signed the paperwork. I brought Daniel with me so he could spend some more time with his new dog. He was THRILLED and it was nice to see him learning to interact with her while she was still near someone she knew and trusted. Right now, I anticipate we'll be bringing her home on Sunday, April 11 (Daniel's 5th birthday). He's already been warned that this is not a "typical" birthday present. We'll see if remembers that come his NEXT birthday.

So, this next week will be a little crazier than usual. Spring Break is ongoing until Wednesday (although Simon will go back on Tuesday) and my parents will be arriving on Thursday for a weekend visit. This house has to be cleaned from top to bottom before their arrival. We also have NOTHING in this house that is required to take care of a dog (crate, leash, bowls, food, toys, etc.), so that has be remedied this week. Also, Daniel begins baseball on Thursday (practice Thursday and Friday, 1st game [with all festivities] on Saturday), Daniel's birthday party is Saturday afternoon, his ACTUAL birthday is on Sunday and now we're bringing a dog home on (probably) Sunday afternoon. BREATHE MOMMY!!!!!!! (note: all these things [except cleaning] are good things.)