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.