Friday, November 27, 2009

Why am I so afraid?

Well, the IEP meeting is in 4 days -- yes, only 4 days from now. I've visited all available programs (one of them twice), did a lot of reading and researching, spoke to everyone working with them in IE services -- I SHOULD be prepared. So, why am I so terrified of this meeting?

I think there are 4 or 5 major things that are weighing on my mind right about now....

1. Will the IEP board agree with the recommendations in the reports in front of them or will they have other ideas in mind? The impression that I've been given is that this should be a resounding "YES" (agreeing with the recommendations, I mean). Because the meeting is taking place at MCITP rather than in the central office (as is typically the case), the committee will be relatively "stacked" with people who are familiar with these two children and their needs. And the recommendations in these reports reflect not only what MCITP feels is appropriate, but I am in full agreement with them. I'm prepared to discuss each of the twins to be sure they are enrolled in the preschool programs I feel is right for their current needs. So, this is of minimal concern right about now.

2. If they do agree, who's to say that the recommendations are right in the first place? And, if they're wrong, what will the consequences be in the time it takes to fix the mistakes? This is probably a fear that never fully goes away. We've already experienced once that not everything we try will be successful. Sometimes it's important to try something, give it a reasonable chance to work, and then be prepared to try something else if the first plan is unsuccessful. These are children we're talking about -- recommendations are based on what we've seen and the experiences of those who have been working in this field long enough to be comfortable to make these kinds of suggestions. If my kids don't match what is expected, the recommendations are going to be less than ideal. But, this falls under the category of "what if" and I shouldn't be going there right about now -- that needs to wait until later....

3. What questions am I going to have to answer and point out about my kids? And, in the end I'll get (maybe) a 5-10 minute break before I have to do it again. This really seems to me to fall under the idea of determining the twins' eligibility for services. Admitting my children's shortcomings is not something that thrills me. Having to do it twice with only a short break between the meetings is not going to be a "favorite" part of the day.

4. Will I lose my dream of keeping them together? I'm nearly certain this answer is "YES" because, due to Rachel and Simon's differing needs, the program that is good for Rachel will not be good for Simon and vice versa. I've been trying to prepare myself for this eventuality all month long, but I can't let go of that last little hope that the committee will be able to come up with something that will allow them to stay together. Foolish of me, I know.....

I've been going through these 4 things all day today trying to determine if there's anything more I can do to "prepare" myself for Tuesday morning. I'm not sure if I can. Much of what's bothering me here is ME. We'll do fine and I know that I have a lot of people really pulling for finding the best solutions for both Rachel and for Simon. At least 1 of those people (the parent educator that we've been working with from the very beginning) will be sitting in this meeting with me and Kevin. And, of course, Kevin and I want to find what will be best work for each of the twins. I just need to figure out how to survive the next few days. When the meeting is over, I'll have to deal with the aftermath (whatever that will be or whatever that means), but I'll deal with that when the meeting is done.

Sunday, November 22, 2009

We think we know what's happening now....

....notice I emphasize the word "THINK".

The IEP meeting is now 9 days away. I am so UNBELIEVABLY grateful to the staff at MCITP Upcounty (one person in particular) who has called in favors galore to allow us to hold the meeting in their facility rather than going to the central office. This will allow Rachel and Simon to play in familiar surroundings and we will get several people to watch them when they lose the ability to sit through this anticipated 2 hour meeting. They will be able to get their normally scheduled speech therapy (Rachel) and PT (Simon) and will even get to have lunch there, while Kevin and I can focus on what needs to be done, specifically, this meeting.

As I mentioned in my previous post, after visiting PEP, I truly believe that the right decision is to send Simon to MPAC and Rachel to CAPP. For Rachel, we have rarely questioned which would be the right program for her since she does so well with the one-on-one ABA therapy she's currently receiving through CSAAC. Simon has become more of the "wildcard" in terms of who will be more difficult to decide which would be the best program.

The Parent Educator/social worker came over here to talk to me on Friday and we discussed things for this meeting, and she told me that she felt everyone was going to likely feel the same way, which means that this meeting should go pretty much as we expect. She informed me that the administrator for MPAC also felt that Simon would do well in her program (she is apparently a very good judge of determining which children will succeed in her programs) which also seems to have some weight in people's minds. Now we just need to make sure that everyone sees things the same ways with the need to enroll them into various appropriate services (speech, PT, OT). Additionally, she will be coming over again on Wednesday (before the holiday weekend) to make sure that we don't have any other questions, as that will likely be our last chance to ask any questions and fine-tune our strategy.

I'm still unhappy about splitting them up though. I think I'm still holding onto just the slightest hope that we can find something that will make everything work with them in the same program. I know that's not really possible, but I don't think I can let that go until after the meeting is over, when I have the final answer.

But soon we will have our answer. Then we just have to figure out how to go about making this transition successful.

Tuesday, November 17, 2009

Preschool Visits are done...

.....and I got what I was hoping out of this visit -- confirmation that it's not an ideal choice for either of my kids. PEP is a good program overall. But right now, I don't think that neither Rachel nor Simon will benefit from that level of service -- they just need both more time (in the form of a longer day) and more intensity. I visited 3 of the PEP programs today -- PEP-Classic, PEP-INC and PEP-Beginnings. Classic and INC are the two programs that were considered appropriate for my kids at this time.

I also took Simon back to MPAC yesterday for a visit so that I can get an idea of how he would do with their program. It really does seem to be a good fit. They don't focus on a single style of teaching, but work more globally with these kids. Considering that we don't really seem to know what works best for Simon, having a less specific program really seems to work more towards his strengths and needs and will also be sure he doesn't fall into a rut in expecting something specific. Simon tends to get locked into something once he gets used to it. This kind of program will reduce that dependence, I think. Additionally, it's a longer day which will allow him to receive the wide range of services I think he requires -- speech, PT and OT as well as classroom time, without sacrificing his learning.

Now, with only 2 weeks (from today) to go before our meeting we need to make sure that we get the services we feel are appropriate and correct. But, at the same time, we need to go into the meeting with an open mind and listen to what they have to say. That means that the "opinionated" Ilene needs to be able to keep her mouth shut. It's not something that I excel at. But, I will have to do my best....

Saturday, November 14, 2009

Another Week Down

And the meeting is looming ahead of us -- only about 2.5 weeks left before we sit in a room with a committee and try to make decisions for these two children that will affect them until they begin kindergarten. All right -- it's not quite true. Decisions can be changed and as we see how they respond it'll be a bit more fluid than I'm making sound right about now. Additionally, there will be at least 2 more meetings before we begin kindergarten.

I'm preparing myself that the most important thing is for me to be "satisfied" with the results of the meeting. I don't think I'll be able to walk out of the meeting "happy". The problem is that there are 2 things that I want to see happen and, as of right now, they can't both happen at the same time.

What's most important is that we find programs that are best for each of the twins. Right now we have an idea of what that is. I'll be visiting the final program on Tuesday and bringing Simon in to visit one of the probable preschools on Monday to see how he does. Both of those visits will give us a lot of information. I'm also meeting with someone from MCITP at the end of the week to try and organize my thoughts once I've had a little bit of time to digest the new information. I don't know if my opinions will change following these 2 visits as to what is best for Rachel and what is best for Simon, but I know that's a possibility. The good news is both Kevin and I are on the same page about everything (as of right now).

On the other hand, for the last few weeks, we've been seeing them really enjoy being together (to the point where they've been falling asleep in the same bed). This is something I've wanted to see since I was 6 weeks pregnant and first learned we were going to have twins. This includes moments of seeing them sharing a crib in the hospital just after birth. I finally got that picture when they were 7 days old. But I've wanted to continue to see the growth of that relationship, and now I'm finally starting to see that relationship emerge. Separating them right now just feels like such the wrong thing to do. I know that this is only for a portion of the day, but it's a LARGE portion of the day. They'll be in school for upwards of 6 hrs/day plus transportation time. If losing the nap helps to eliminate some of the sleep issues we've been seeing for the last several months, they'll be sleeping for 10-12 hrs/day. That leaves approximately 5 hours (on Monday-Friday) of "together time". Is that going to be enough?

Again, I know that what's most important is finding the appropriate program for each of them, and if it means separate programs, then that's what we'll do. If it comes down to putting them in a single program just to make me happy, that's a bad result to this meeting. If they are separated, as of right now, I'd call that a "satisfactory" result and over time, when I can get over this "dream" of mine to keep them together through at least kindergarten, I can learn to be "happy".

Right now, I just don't know.

Thursday, November 5, 2009

Changes are Everywhere... do we as parents know when a change is a good thing or a bad thing?

We've been having a bit of a problem with Rachel, on occasion (but consistent) for about a month now. It's almost like she refuses to do anything from anyone (other than me and Kevin) who isn't part of CSAAC. If it's not ABA, it's not worth her time and effort. We spent a long time getting her ready to participate in Circle Time for her to participate in the Wednesday session at school with Simon so that I can join the concurrent Parent Group. For about a month now, she REFUSES to sit and cooperate. And this has spread into the rest of the session on Wednesdays (very quickly). At first, the teachers thought that perhaps she wasn't feeling well (the start of these behaviors worked out, timing-wise, consistent with her having a cold). But the moment she was in the car (twice) and the teachers were no longer in sight, she was a VERY happy little girl.

Additionally, since MTW ended last month, she's been receiving speech therapy weekly (one hr/wk) with the SLP that we've been working with from the beginning. Every time she comes over, Rachel becomes extremely obstinate and refuses to cooperate in any way, unless it matches her agenda. This is especially true when the SLP works with her at lunchtime (which I'm grateful for the help). For the last 2 weeks, she refuses to eat much of anything, including the specific items that she asks for while the session is going on. I intentionally gave her yogurt this last Tuesday because I was giving Simon yogurt and she got very upset the one time he was getting yogurt and she wasn't. I ended up having to pull out cheese for her lunch, despite the fact that she kept DEMANDING the yogurt (and then refusing to take any of it).

With their birthday coming up in a couple of months, we have to consider how best to prepare them (in this case, her) for preschool. No matter which school she attends, she will be expected to participate in group activities and accept leadership from adults. This is something we've been working with her for a while -- and it looked like she was making a lot of progress. Now I'm not so sure. Is it that the "honeymoon period" is over? It doesn't seem so, because her ABA sessions continue to go just fine (as long as she's not too tired). Do we need to change what we're doing with her right about now in order to help prepare her? Or do we just need to stick with it and force it to be successful.

I really wish I had the answers. We're quickly running out of time.

(reading the last couple of posts, you'd never believe that my life was better right about now, would you?)

Tuesday, November 3, 2009

The good news is.....'s nearly 9pm on November 3rd, and my attitude is still vastly improved over the last several months. The bad news is I'm EXHAUSTED!!!!!! Daylight savings time ending, in theory, gives you an hour of extra sleep. However, since entering parenthood, I have NEVER experienced that phenomenon. I have "lost" the hour sleep when daylight savings time begins, however. Why is that?

The frustrating thing right now (but still cute) is Simon's new habit of climbing into Rachel's bed every night. She's fallen asleep like that 3 times, Simon twice. They are just so adorable seeing them like that, but Simon really is bothering her at times when he's in her bed. I do think that she's inviting him in though. When he first noticed it, Kevin called for me to bring up the camera -- apparently, they were "spooning". By the time I got the camera up there, they had both changed positions and I never got to see the image that Kevin described. But they were still adorable to behold and it was another chance to see that picture that I had from the moment I learned we were having twins -- the two of them lying in bed together. I expected this when they were newborns -- wasn't planning on it when they were nearly 3 years old -- but I'll take it!!!!!

But things have been really going much better lately. I don't know if it's because of that "day off" we took last week or something else led to this change, but I'm feeling much better about everything right about now. Maybe I've just gotten used to the look of the calendar (with the kids schedules filled in almost completely). Either way, I'm just grateful that life is better these days.

Sunday, November 1, 2009

It's A New Month....

.....and a new attitude has emerged.

We actually took a "day off" on Friday -- since I'd already canceled Rachel's ABA session to attend something at Daniel's school, I declared Friday, October 30, 2009 as an "Autism Free Day". We didn't quite make it that far, but we were close. We attended a playgroup that we hadn't had the time to attend for MONTHS. We didn't have to rush home for an ABA session with CSAAC. I didn't even stop Simon from "stimming" on toys, as long as things didn't get out of control. And I think we were all the better for it.

And now we're back to reality. Halloween is over. November is here. And the world is a better place for me right now. I'm not exactly sure how it happened, but I'm just happy it has. Tomorrow, ABA sessions begin again in earnest, and Daniel will be home (no school for some reason). But I've arranged a playdate for him so he should have fun and I should be able to spend a little time with Simon.

So, we're ready for the new month around here. And hopefully the new attitude will stick around for a while......