Remembering How Hard It Can Be

There is a post today on SPD Blogger Network written by a South African Mom talking about her concerns about needing to raise her twin boys differently because of the issues that they face (one has SPD [and a few other issues] where the other does not).

As I read this post, I was transported in time.  I was remembering visiting preschool programs for Ballerina and Music Man.  I was remembering driving around in the car because as I visited these programs, I knew they would be placed in different places because I knew that no one school would best suit their individual needs.  But, in my heart, that wasn't what I wanted for them.  I wanted them to be together.  In my heart, I knew that they needed to be together even though my brain was telling me that I needed to consider their individual needs first.  I remember crying every time I thought if it, how I was going to have to face the fact that one would be going to Program A and the other to Program B.

And I remember those meetings.  I remember at the end of Ballerina's meeting making the decision to send her to the program called CAPP, which was definitely the best placement for her.  But instead of thinking that, it was that final nail in the coffin -- they weren't going to be together because CAPP was a BAD choice for Music Man.  I remember taking a 10-15 break between the two meetings and going over to an observation area and watching them both in their classroom, trying to pull it all together.  And I remember starting Music Man's meeting when they were enumerating all of the reasons why we needed an IEP (I realize this is a part of the process, especially in an initial IEP meeting, and they weren't pulling out things that we didn't already know), and I remember them asking me at the end of this if I needed a moment.  They thought I was upset about all the reasons for Music Man's IEP.  But that wasn't the case.  It was the reality of Ballerina's placement and the consequence of separating these two that was making me struggle to hold it together.  And I remember not being able to fully pay attention throughout his meeting because I just couldn't deal with it.

I cried about it that day and night.  By the morning I thought I was all right.  We had made the best decision for each of them.  They were going into programs that would address their weaknesses in ways that played to their strengths.  And for Ballerina and Music Man, they were different areas and different strategies.  And I remember talking to the other parents about the whole IEP experience (since their initial meetings were upcoming).  And I was doing a good job holding it together.  It wasn't much of a struggle.  And I'm giving myself a mental pat on the back......I'm getting over my emotional hang-up and am ready to do what I know is the right thing.  But then, when I put Ballerina and Music Man into the car, it all came flooding out.  It was like I was back at the beginning.  Separating them was WRONG!

I also remember calling our case worker that afternoon while the twins were napping and Big Brother was having his "Quiet Time" (for he no longer napped).  I remember asking her when (and if) this would ever get easier.  And she pointed out to me that I knew what the right answer was, I just wasn't ready for it.  Eventually, the two would come together.  She couldn't tell me when, but I knew she was right.  And, I also knew that if things weren't working out, we could look into making a change.

I'm not sure when it happened.....when it became all right that they were in different schools and different programs.  But eventually, it was all right.  That didn't change the fact that I was grateful that they are now in the same school, and I'm sure that the togetherness is part of what I was trying to achieve.  But I stopped looking at them as a unit together when it came to their IEPs and allowed myself to separate them into the two unique individuals that they are.

Don't get me wrong.....losing that dream of them being together for so long hurt, and it still does from time to time.  But I see their individual growth, and I know that this was one of the times where my heart was wrong and my head was right.  My dreams for them are my own.  I need to give them a chance to realize their own dreams and those may be with our without the other.

My babies aren't babies anymore.  They are growing up.  And they are becoming amazing people.

So Much Progress, So Far To Go

Today was our first review meeting for Ballerina.  She has been in a general education classroom for 7-8 weeks and we needed to sit down as a group and figure out what's working and what's not.  We had agreed to do this during her placement meeting / annual review at the end of last year.

Yesterday, I went to visit her in her classroom.  I wanted to see what her teacher sees so I could understand the things that she was bringing up in the supporting paperwork.  And, we all know that many children display something different while they are at school as compared to when they are at home.  And her teacher told me that in so many ways she has made some great improvements, especially in these last couple of weeks.  Her outbursts are less frequent and less intense, she has become much more compliant (especially for her classroom teacher) and they are discovering some of her passions.  However, her focus is a real issue.  She has a very difficult time following anything greater than 2-step instructions and she needs someone constantly prodding her to get her tasks completed.

But I watched her complete tasks.  I watched her complete worksheets that involved multiple tasks (coloring, cutting and pasting) along with working on an academic concept (rhyming).  But every minute or so, the para who was working with her had to prod her to get her focus back.

But the meeting started this morning and it began with the principal explaining that at the start of the school year that many on her team were concerned about her placement in general.  General education classroom is extremely demanding and it was thought that perhaps it was beyond what she was ready to handle.  However, these changes in these last couple of weeks showed them all that yes, a general education classroom is the right placement for her.  We just have to make a couple adjustments to her plan to allow her to be successful.  Knowing that we weren't going to make such a change (even though I strongly suspected this would be the case), it definitely helped to put me more at ease.

And transitions are still a problem (although they are greatly improved).  She is no longer considered a menace to herself or her classmates with her constant body dropping behaviors as she was when the school year began.

It was great to listen to her entire team talk about all of the improvements she has made thus far this year.  We did increase the number of hours of support because, honestly, she needs it.  She was originally assigned 15 hours/week, but in practice she needs (and receives) 25 hours/week.  By putting this into her official plan, it helps the school find the needed staffing and makes it more likely that she will get a dedicated staff member which will give her the consistency that she needs.  The intent is still to try and reduce it over time, but for now, she really needs the help.  Without it, she is not able to stay on task.  One of the things I did observe is the 30 minutes or so in the morning where she is working independently.  She was unable to complete any tasks.  And when I asked if this was true regardless of the "center", her teacher informed me that it is.

Her classroom teacher is going to attempt a few simple tricks to see if they can improve her focus, including introducing some background classical music for quiet work times.  Since she seems to enjoy music so much, perhaps it will help keep her calm and allow her to focus more on the tasks at hand.  In addition, we are initiating a Formal Behavior Plan to ensure consistency across various staff members.  Hopefully, these will all contribute to her success.  We also agreed to meet again in December to discuss whether these efforts are successful and to, if necessary, make further modifications to her plan.

Now it's time to turn my attention to Music Man's meeting, which is scheduled for next week.  His meeting will be a full annual review which will likely be a bit more intense.

I need to learn to control myself in approaching these meetings.  They always cause so much anxiety.  You would think I would be used to them by now.  Perhaps this next one will be the one that makes me realize that this process is in place to help my children and I shouldn't get so worked up about these every single time.

Thinking.....Thinking.....

WOW!!! I haven't written anything here for a week! It's not that nothing has been happening -- it's just that it's been pretty quiet around here.

We just learned when we are going to make a "final decision" on Ballerina's kindergarten placement (late May). Last month, we discussed our options and decided to hold off making a decision until the end of the school year to see how she does as her teachers institute a couple of changes in the way they address her. She has started attending the kindergarten in her school for an hour or so each morning. While she is there, she is expected to behave like the other students in the classroom. She is expected to listen and to raise her hand when she wants to talk. And when she talks, she is expected to answer the specific questions. They are placing more demands on her to see how she handles the load. And they have instituted a "token" system -- when she behaves, she earns tokens. And then, at the end of the day, she can trade in her tokens for computer time, dress-up time, and time in front of the mirror.

So far, in general, we're seeing quite a bit of success. She has had a bad day or two, but in general, she's taken to the change in routine and thrived. And everyone is entitled to a bad day from time to time. And I'm thrilled that this has been so successful.

But I'm still worried about what's going to happen next year. I almost wish this wasn't quite as successful....if it doesn't work, they won't try to put her in a typical kindergarten classroom but into the Early Learning Center and then we can work on this next year. With this success, it's more likely that they will feel that our best option will be a mainstream classroom. And I have my doubts. I think she will be successful on most days. But what about when she has a bad day? Now they can remove her from the kindergarten classroom and prepare to start fresh the next day. But if she's not in the Early Learning Center, I'm not sure what they can do about it because they won't have anywhere to send her.

I know how this sounds. But it's accurate....I want her to have the learning center as a safety net. If she is placed there, she can use the resources available in that room to help her when things start to fall apart. We can use them for one year to help her make this transition. The CAPP program is one-on-one. It is considered one of the more intensive programs, and this is why I was told last year that she wouldn't be ready to enter a diploma bound program when she left preschool (see the article I wrote on SPD Blogger Network). I still would like to see her have a chance to acclimate to the school and then take the time to integrate into the typical classroom, which means placing her in the Early Learning Center. I want to see her thrive. And I believe the best way to make that happen is to give her one more year in a special education classroom.

Only one question remains.......who in that room is going to agree with me at the end of the school year.

A Goal Achieved

Well, now it's official. All 3 kids will be attending the same physical school next year. Big Brother will be in a typical 2nd grade classroom. Music Man will be in the Early Learning Center. And Ballerina will be in either a typical kindergarten classroom with resources or in the Early Learning Center with her twin brother. There will be no buses (except for field trips). There will be no need to coordinate between 3 different schools when one school is off one day and the other two are going, or two have a half day while the third does not......one school......one location.......one family!

This happened yesterday when we had Music Man's placement meeting. It was the simplest meeting I had ever attended, mainly because it was just formalizing the discussion I have been having with his teacher and administrator over these last few months. There were no surprises. There were no questions to be answered. We already knew where he was going and what we needed to pass along to his new teachers.

THIS has been the carrot for me. Everything we've done to date has led me to this point. To have all 3 of my kids in one school and have that school be located just down the street from our home feels like I've entered paradise. They will both have peer models to learn from. They will both be learning the state-wide kindergarten curriculum. They will both be given the same opportunities as their typically developing peers. Perhaps they will make friends (or maybe not).

When I think of where we were 3 years ago, I'm just in awe. They have learned so much! And they have made this Mom so proud!

And the answer is......

Well, today was the meeting to determine Ballerina's placement for kindergarten next year. We were also going to review the recent re-evaluation of her autism classification. Her last official evaluation was over 2.5 years ago and given her progress, the information contained in those reports were completely out of date. Don't get me wrong -- she's still autistic. But, in addition to those reports being over 2.5 years old when we are talking about a 5 year old, so much has changed since the introduction of intensive ABA (which had not been started at the time of the last evaluation) that we really couldn't use that report to understand her current status.

The review of the reports was really simple. The data that had already been presented to us about a week ago in the form of the written reports. We had a few questions, but the majority of the meeting was spent doing 2 things....(1) listening to the pre-K teacher describe her recent performance in class and (2) determining her kindergarten placement for next year.

When the pre-K teacher arrived, I was so grateful for everything she was saying. She spent about 15 minutes describing the problems that Ballerina was having in integrating into the classroom. She talked about how disruptive she is during circle time and group lesson time. She talked about how Ballerina has trouble dealing with the sudden changes in routine that just naturally come up. She is running into all sorts of minor problems with the teacher. She also never really cares about her classmates. She wants to do what she wants to do, when she wants to do it. That's Ballerina. And by the teacher bringing up these issues, I was just gaining ammunition to use to support my thoughts that she belongs in a special education classroom.

But when it was time to talk about placement, I was a little surprised by what the Autism Office representative proposed. She said we should wait until June to make our decision. Following the suggestion of a friend who has been through this already, I was prepared to ask them if we could revisit this issue at the end of the school year when we see where she is at that time. I have been promised that there will be a place in the Early Learning Center if that's where we feel she will best succeed at that time. And, if not, we can decide to put her in a typical classroom with "xx hours of resource" per week. I'm not exactly sure what that means, but I intend to find out. We were talking about 15-20 hours per week. 1-3 hours of that will likely be for speech and OT (occupational therapy), but I'm not sure where the rest of the time comes in. Would she be spending that time in the Early Learning Center? Or will she have a para shadowing her and helping her get through her day? This is something I need to find out.

But in the meantime, Ballerina's teachers are going to be doing some experimentation. She currently participates in the pre-K class in the morning. They are going to try to introduce her in a kindergarten classroom (which is considerably more structured) for an hour in the afternoon to see how she performs. She also is going to start having lunch with the kindergarten class to see how she interacts with those kids. They are also going to start having the para become more invisible. They will be there to help should the need arise, but they want to see what Ballerina can do on her own. This is all information we can use when we meet again at the end of the school year.

So, we don't have an answer, exactly. But we do know that she will attend her own home school. Which means that, as of right now, we know that 2 of my children will be attending the same school next year. Music Man will likely be joining them, but we won't know that for sure until his meeting next month.

Our Next Step

It's been a few days since I sat down here to write a post. I think I just needed the time to think things through on my own and digest everything that happened to my family in the last 10 days or so. And many of these things are WONDERFUL!!!! Potty Training success (Music Man is even starting to stay dry during the night [although we have no expectation of that happening right now]). And the recommendation for Ballerina's placement -- it truly is a dream come true. I just needed to take a few days and get my head wrapped around it all. And I needed to do that before our meeting on Wednesday.

It's funny that I took time OFF from blogging when I was trying to get myself organized -- usually, this is where I do my thinking. But I think this one was a bit more internal. I love sharing our stories, but I needed to think this through on my own and then come back when I understood where we are headed. And now I believe that to be the case.

I'm speaking, of course, about Ballerina's kindergarten placement. Getting the recommendation of having her enter a typical classroom in kindergarten -- that really goes beyond our wildest dreams. This is what I want for her -- for both of them. It has been my goal from the moment we began our journey in the Autism World. But I have to take a step back. That may be my dream, but is it a wise decision for HER? SHE is the one who has to go to school every day and cope with her classroom, teacher, and classmates. Is this too much for her right now?

We think it is. Her current school environment is 1-on-1. In a typical classroom, there will be 1 teacher for upwards of 18 students. There will be no supports for her. And we are seeing an increase in behaviors over the last few months as well. So, we have a proposal for the team.

We don't believe she is CURRENTLY ready for a typical mainstream classroom. And based on the reports we received during her re-evaluation, we really don't think her teachers believe she is ready for that either. But that doesn't mean that she isn't ready to be introduced to a typical classroom setting. We can continue working with her during this school year to maximize her independence in school. We can fade the supports that she receives so that she has to do more and more things on her own.

But for next year, we are going to request that she enter the Early Learning Center. The nature of the program allows her mainstreaming opportunities for gym, art, music, lunch and recess. But she may be ready for more then that. After she establishes herself in her new school setting, we can begin bringing her into a typical classroom independently. We can start with short bursts and increase the time she spends in a typical classroom as she demonstrates she can handle the experience. Then, by the end of the year, she will be ready for a typical classroom setting and in first grade, we can introduce that new environment for her.

I believe this recommendation was made blindly. I don't believe the cluster representative had access to her records and history. She came and watched her for 20-30 minutes and the teachers tried their best to be sure she was as cooperative as possible. This is a good thing. I wouldn't want the cluster representative to be biased given what was written in those reports when she arrives to observe. But she doesn't know Ballerina. I do. Her teachers do. And I feel that she is overestimating what Ballerina can do right now.

I'm comfortable with this decision. I really do believe it's best for her and will allow her to adjust at her speed. And we are only talking about postponing mainstreaming for approximately one year. She may "survive" mainstreaming right now, but I really don't think she'll be able to thrive. I need her to THRIVE. Not just get by. If one more year will make that difference, it's definitely worth that postponement.

I'm not exactly sure what I will be walking into on Wednesday. Given the reports from her re-evaluation, the team should agree with me that mainstreaming to start her kindergarten year is not the wisest placement option for her. But I know they tend to be a bit aggressive. I am going in there prepared to argue for what I know to be the best for my daughter and hopefully that preparation will not be necessary. But I'll be prepared.

My Head Is Spinning

Why does it have to be February? Why can't we just go from January to March? It always happens in February. For the last 3 years, my life has been turned upside down during this short month.

That is true for this week, in particular. This week has shown itself to be a bit much. Things keep happening and are getting added to the mix. And today is no exception.

You see, we have Ballerina's placement meeting coming up and I'm getting the feeling it is NOT going to go the way I want. I received an email from Ballerina's teacher earlier today that told me her behavior is getting worse rather than improving. We have an appointment with the developmental pediatrician at Children's Hospital on Tuesday (after potty training weekend with Music Man). I'm going to print out a copy of this note and bring it with me so we can work on addressing some of the specific issues the teacher describes.

But the representative from our school cluster who will make a recommendation of whether or not Ballerina will do well at the Early Learning Center at our home school will be coming to observe her in just 7 days. If these behaviors show themselves during that visit, I strongly suspect that the recommendation won't favor her placement there. I know.....maybe that means that she would be better off in the second setting, but I truly don't believe that is the case. She won't have any NT peer models to emulate. I don't think the class will challenge her. To put it another way, I didn't get that "warm fuzzy feeling" of knowing it's the right place for her like I did when I visited CAPP (her current school) or the Early Learning Center. I really can't explain it very well......it's an instinct. But I have to be prepared to argue that point to the committee. I don't think they are going to take Mom saying, "I just feel it's right for her" if the cluster rep says "No".

So, on top of everything else, I have to work out a strategy to convince a room full of educators that I know where my daughter belongs for next year. I have to be prepared to make my case so that they are willing to consider what I have to say. It may not be necessary (hopefully I will know on 2/24 after the cluster rep leaves) and the recommendation will be positive, in which case, it's pretty much a "done deal".

Why does it have to be February????????

My Personal Conclusions

As I've mentioned numerous times, we are preparing for Ballerina and Music Man to leave the preschool world and enter kindergarten in the fall. We are fortunate that we live in an area that offers several programs for young students with autism. And, in order to be prepared for their placements meetings, we have visited 2 such programs.

The first one we visited was a school-based learning center. This is what I had always thought of as "Special Education" growing up. It is a program in a typical school that addresses the special needs of its students. There are opportunities for mainstreaming. Early on, these opportunities are designed to be during specials (gym, art, and music) as well as lunch and recess. As they grow, more time will be incorporated into the day. Additionally, if students can handle the experience, there are opportunities for them to spend additional time in a typical classroom, just without the added supports that they are currently accustomed.

We are fortunate that our "cluster's" learning center is located in our own home school. This means that it's the school that is just down the street from our house and the school that Big Brother has been attending for the last year-and-a-half. I am involved in this school's PTA and volunteer in Big Brother's classroom weekly. I'm recognized by many of the staff, especially in the office, and have gotten to know several other members of the school community. This is all a good thing. Additionally, I have taken the opportunity last year to speak with the kindergarten teacher to learn what is expected of her students when they enter this program.

Both Dad and I left with the impression that both Ballerina and Music Man would succeed here. We weren't certain at that moment if this was an ideal placement for them, simply because it was the only program we had visited (to date) and just had nothing to compare it to. For Ballerina, there was still one more program to consider. For Music Man, there was at least one more, possibly a third.

Today, we went to visit that second school. This school is also an academic program, but unlike the Learning Center I described a moment ago, that's part of a standard school, in this case the entire school is special needs. This bothers me. How can they learn to interact with typical peers if there are no models and no opportunity for such interaction in a school setting? But we visited anyway, knowing it was a strong possibility for Music Man and a decent possibility for Ballerina.

This school is NOT near our home. It took a good 30 minutes to get there after rush hour had ended. If either child would be attending this program, they would be heading over there during the extended rush hour for this area which means the commute would add upwards of 2 hours to their already long day. But Ballerina has had long bus-rides in the past. So we knew that shouldn't be a deal-breaker.

The tour of this second school was very interesting. Every classroom has a "Promethean Board" to be used as a learning tool. Additionally, in every classroom there is 1 teacher and 2 para-educators and the class sizes are anywhere between 6 and 10 students -- in the other school program, it's 1 teacher and 1 para-educator for upwards of 12 students. There are more opportunities for hands-on work. There is always speech pathologists and occupational therapists on-site.

But something else disturbs me about this school. It is an academic program so they wouldn't fall behind and would meet the minimal criteria to pass each grade level, but academics is not necessarily the emphasis in the classroom. They work on behavior modification and life skills as well. This really isn't the case at the other learning center. At the school-based learning center, there is a far more academic focus.

My children are very intelligent. They prove it to me over and over again. They are manipulative, endearing, challenging, and autistic. They surprise us nearly daily with the many things that they can do. I want to push them to be all they can be. I know that seems strange to say when we're talking about kindergarten programs, but because of the issues they will face as their academic careers advance, they NEED a program that will push them now so that they can face the challenges that lie ahead.

I truly believe, sitting in this chair this evening, that both of my children belong at our home-school's learning center. And Dad agrees with me, not because I told him to but because this is the conclusion that he reached based on visiting these programs. They should be placed there because I believe this program will challenge them but is still restrictive enough to address their many needs. And by being in an academic environment alongside typically developing peers, it will give them the opportunity to learn to successfully interact with them. Because when they leave elementary school after completing 5th grade, if they are going to continue in an academic program, they will need to do so in a mainstream setting, unless things change before then. I also want this to happen for more selfish reasons. If this does occur, all 3 of my children will be in the same school. Ballerina and Music Man will be back together, just as twins SHOULD be (in my opinion).

I hope that the team of teachers and educators agree with us. I welcome discussion because that will most often lead to making the best decision for the kids. But, in this case, I want us to start on the same page. What a success story this would be!

Time to "Be Prepared"

I thought that was a fun title for this post as Big Brother is a Tiger Scout and one of their den rules is "Be Prepared" (in preparation for becoming a boy scout in several years). But now it's my turn. We are approaching a major change in our child-raising experience when it comes to autism. And, because of the timing of various things, the time has now come to start preparing myself.

I am speaking, of course, about Ballerina's and Music Man's imminent entry into kindergarten. It's coming in September, whether we are ready for it or not. That's 8 months away. And decisions need to be made. We need to figure out what programs are best for them. We need to determine what areas we need to focus on to allow them to be successful as their school careers advance. And that decision-making process begins this week.

Yup.....on Thursday, Dad and I are going to visit the first of the recommended programs. We will visit another next week. This one is the one that I'm hoping will be the best fit for Ballerina. It's a special education program in our home school. The teacher's reputation for working with her students cannot be questioned (although parents often seem to fear her). The students are blended with their typical peers for specials and they share lunch/recess together as well. There are further mainstreaming opportunities if it is appropriate for each student. And this program has been my target, initially for both of my kids (Music Man's ideal placement is not in this program, however, per his teachers).

However, this is a HUGE step for my Ballerina. One of the benefits / detriments to her current program is that the teacher:student ratio is 1:1. She is used to having a teacher or para-educator beside her every moment of the day to help her, even though they have been trying to encourage her to do things independently. This will NOT be true in kindergarten, regardless of which program she is to enter. This is going to be hard for her to take.

I also have been hearing things that are happening in the school that makes me nervous. I have concerns about bullying, in particular. I'm not too concerned about this at the kindergarten level -- everything I hear affects children in the older grades. But I have to figure out how this is handled and how I can be on the look-out for my children to be sure they aren't victimized. I don't want to see all of their progress fade away because I have this dream of them to be just like all of the other children.

I also have to, once again (just as I did 2 years ago), remind myself that Ballerina and Music Man are two very different children. They are both smart and lovable. They are both autistic. They are both my children. And they are twins. That's about it for their similarities. Their needs are very different and what I need to consider for each will have to also be very different. It's still possible that the same program may suit each of them, but I have to be prepared that I will not have all 3 of my children in the same school as I was hoping to see this past September.

Either way, a placement decision for Ballerina is currently scheduled for February 27. This is why we need to consider these programs now. And, since we are considering them for her, we need to consider them for her brother as well. Time will tell what we choose to do. Let's just hope that I can make my own decision, that Dad and I agree, and that their respective teams will also support that decision. But I know to listen to what they have to say and to keep an open mind.

Here we go again!!!!!!

Anxiety

I don't think parents of special needs children are more anxious about anything as much as they are about the dreaded "IEP Meeting". And I have to count myself in that group.

Simon's IEP Meeting is on Thursday. I will be going to school to visit and observe tomorrow (Wednesday). I have reviewed his draft IEP document and have a couple of questions, but they are minor. But once again, I'm about to sit in a room that is going to define his next academic year (but I realize this time that we aren't going to be seriously considering kindergarten placement yet) and I find myself wondering if I am making the best decisions.

Is my desire to have him attend this particular program for kindergarten really the best option? Because all of the goals and objectives have that plan in mind. There are many reasons I want him to go to this particular program. Some are for his benefits and others are for mine. And there's always that thought in the back of my mind of putting Rachel and Simon together again, a dream that I (apparently) still haven't fully let go.

I don't know if we are going to take the time during the meeting to discuss the options (even though we won't reach a decision). But, unlike for Rachel, I'm really not sure what the best choice for Simon will be. Either way, I hope that we can discuss it rather than have one of us dictate to the other what should be done.

School is Coming

This is something that parents look forward to, probably more than most things during the year. This is also something that children look towards, some with anticipation, some with dread as it is a clear milestone for them. Return of routine. Return of strict structure. Return of goals. And return of worry.

School is where we see the most progress in both Rachel and Simon. This is where they learn how to be with their peers and where they assess their ability to cope in various settings. They introduce as many settings as possible to teach them to cope. And they use these experiences to determine placements. This year, at their IEP meetings in the first couple of months of school, we will be targeting their kindergarten placement. It will be too early in the school year to make assignments, but I have goals for each of them and they are both attainable, if everything goes well. But we have to work. I'm gearing myself up for a VERY busy year. It's quite worrisome, but I know everything will work out fine.

Yesterday was open house. Yup, 3 of them. Simon's was at 11, Rachel's at 2 and Daniel's at 4. There were issues at all 3. When we went to Simon, I had both boys (Rachel was at her last day of gymnastics camp at The Little Gym (which she LOVED). We pulled into the parking lot and Simon threw a FIT. He did NOT want to go. He didn't want to get out of his seat, even though I had been telling him that we were going and he was going to see his teacher (Ms. Evelyn) who, although she has never been his teacher for school before (but has been for camp), he is familiar with her since he started the program. But no...."NO SCHOOL!" he kept shouting. Well, I suppose I should be happy that he recognized we were at "school" and that he was expressing his opinions so effectively. But, starting Monday, he'll be back there. I eventually got him inside, promised I wasn't leaving and he did have fun once he started recognizing his friends, teacher, and, most importantly, books. We were there for nearly an hour and he did eventually relax and have fun. The bus will come to pick him up on Monday and we may have some issues there, but I hope his anticipation will outrank his fears and trepidations.

After picking up Rachel from camp, we headed over to HER open house. We got there pretty much right on time, along with the rest of her school. And, unlike Simon's school, this is a full elementary school (Simon's school has a total of 12 students currently) which means that we were facing a lot of kids, parents, teachers, administrators......it would be overwhelming to anyone, much less a 4.5 year old girl with autism. Daniel was excited to be there....another place for him to explore. Simon knew it wasn't HIS school so he too was fine. Rachel was SCARED. She tried to hide behind me. When the principal got down on his knee to say "Hello" to her, she just clung to me even tighter. He recognized the need to back off and addressed her later in her own classroom rather than in the crowded entryway. She has been asking about "Ms. Suzanne" since summer school has ended, even though she will no longer be in her classroom. As we were going down the hallway, she suddenly seemed to understand that her teacher was changing and decided to give "Ms. Suzanne" the cold shoulder (how DARE you switch me to someone else's class). But again, as she recognized where she was and all her favorite things were still there, she seemed to settle into it all.

I had a lengthy conversation with her new teacher about what I was hoping to see about her kindergarten placement and how the Focalin should really help with her attention issues that we were seeing last year. We are still waiting to see whether she will be joining the morning or afternoon pre-K, but once we know that, we will be able to determine if we need to start administering the medication before she leaves for school or during lunchtime. They intend to wait a couple of weeks before making that determination, and I will allow that to happen. But again, since my goals for her are aggressive, I can't allow myself to become complacent.

Then we were waiting for Kevin to come home so I could take Daniel to HIS open house. After all, he had been to the other 2 (and had a blast since their classrooms are full of toys). By the time he came home and we walked down the hill, the Open House at his school was over. We were able to figure out who his teacher was, find the classroom and review the class roster (only 2 kids from his class last year are in his class this year, but fortunately, one of them is someone he considers a friend) and none of the other kids he talked about last year are in his class. But we never got to meet the teacher. So, on Monday, Daniel will get to meet his teacher for the first time. He has actual DESKS this year, which is a change. But what was his impression of the classroom? BORING!!!!! I tried to explain to him that he (in first grade [and a typical first grade classroom]) wasn't going to find a room full of toys like his brother and sister, who were in pre-K. But I think he's a little jealous.

But the boys both go back to school on Monday. Rachel starts on 9/6. Our extracurricular activities are also starting again these next couple of weeks. Our lives are about to go back to being a series of routines. Everything we do will be based on schedules, because that's just the way we are. And I think everyone here will be happy about it!!!!!

Is There EVER a "Right" Answer?

You see, we have a problem (what else is new?). Rachel's IEP Meeting was October 17. At that time, it was decided that she should be included in a typical pre-K class in her school to allow her to work on her social skills with her neurotypical peers. This would help her learn how to interact with others and would hopefully allow us to see her enter a typical kindergarten classroom setting at best, or at least allow her to be placed in "The Learning Center", one of the special education options for our public school system.

In our opinion, social skill development is the biggest shortcoming of the program she is currently enrolled; it is a program that is 1-to-1, highly-intensive ABA. It is a language and behavior based program. She rarely spends any time with other children with any realistic expectations of forming friendships. All of her "relationships" are with her teachers. So, by including her in the pre-K class, she would still get the 1-on-1 that the program is designed for part of the day and still be able to develop social skills. She was to start at 15 minutes/day and work her way up to the full afternoon.

It has been 6 months. She is still only attending this class for 15 minutes/day. It's not because of the school's refusal to incorporate the plan. It's because Rachel has been unwilling to cooperate. She cannot sit still and refuses to follow instructions. They have tried several different things, and they still have been unable to increase her time in this classroom. The question is "Why?"

I received an email from her teacher that we need to consider her placement. That can be read in a couple of different ways. Are they thinking that we need to change her overall placement for next year? Do they think we should modify her existing IEP? Or are they just looking for suggestions from me as to how to make this inclusion happen more successfully? This has led to me scheduling an observation visit on Wednesday afternoon, specifically to see her inclusion time with the pre-K class.

I was thinking that they may possibly be thinking putting her in a combination of programs. I mentioned in an earlier post that one of the family of preschool programs offered by our schools is called PEP. There are several different iterations of "PEP". The schools where these programs are located, often have more than one of these programs. There are children who cross between different PEP programs (I know of one who spends part of their day in PEP-INC and another part in PEP-Classic). However, neither the locations that I know of which has CAPP (where Rachel is currently) has any of the PEP programs. I was wondering if a good solution would be to combine the two programs (CAPP and PEP-INC) in the way they are currently trying to combine CAPP with the typical pre-K (perhaps she's not ready for that yet), but this is likely not a feasible option. I know that the schools are required to implement the IEP as it is written. I also know that they will not write an IEP in such a way that the resources don't exist to implement it correctly.

So, what's the right thing for us to do? When we were approaching her meeting in October, I was worried about the possibility of her being removed from the CAPP program. And I believe I was right at that time. And I'm still concerned about this. But today, May 10, is this actually the best thing for her right now? Would she be better off switching to PEP-INC? What (if anything) would we be sacrificing considering how well she learns via the ABA model?

Stay tuned.....right now, I'm not sure what that solution is going to be. Or, perhaps I'm reading too much into this meeting....

Hope Never Fails (or listens)

About a month ago, I attended a meeting between parents of children on the spectrum and our local school district. It was hosted by a parent-run independent organization whose mission is "To promote, support, and advocate for the education of diploma-bound students on the autism spectrum in grades K–12."(1). Having 2 very intelligent children on the spectrum, I thought it would be a good organization to look into. It would allow me to anticipate potential issues and start learning how to address potential pitfalls. Sounds good, right?

I served as "note-taker" for the preschool forum. It was an opportunity for me to listen in to learn how these children are transitioned from the various preschool programs into kindergarten. The representatives from the school system talked primarily about the preschool programs that have been designated as "PEP", which (from what I understand) is where the majority of students on the spectrum who would be considered "diploma bound" begin their school career. Neither Rachel nor Simon are in "PEP". So, after the session was over, I had a brief conversation to address the potential transition for my kids. This conversation did not happen between me and one of the representatives from the school system, but with the "moderator" of this breakout session, who happened to be an officer with this organization. In addition to being a part of this advocacy group, she is also a social worker for our school's Early Intervention Services group (but a different office than we had worked with) and has a daughter on the spectrum who is diploma bound.

Given this information, I was looking forward to the advice she would have for me. I told her that I have a daughter in the CAPP Program (Collaborative Autism Preschool Program) and, starting during her last IEP meeting in October, have had conversations with her teacher and the representative to the Autism Office about the possibility of her entering a mainstream kindergarten classroom when she is ready for kindergarten in the 2012-2013 school year. CAPP is the most intensive program offered by our local schools. It's a highly-intensive 1-on-1 ABA-based learning system. Many who enter the program are non-verbal. They all have significant issues regarding language, behavior, and impulse-control, as well as many other areas. Rachel has THRIVED in this environment. We had learned while we were still working with Early Intervention Services (Infants and Toddlers) that she responds to the learning system, ABA. I don't think this individual heard anything I said after mentioning Rachel was in CAPP. Or, if she did, she chose not to listen.

She basically told me that my daughter would not be able to function in a mainstream kindergarten classroom. She went as far as to say that she will likely NOT be diploma bound. A child requiring that level of intensity of services at the preschool level will not be able to function in a classroom setting.

HOW DARE SHE!!!!!!

This is someone who advises other families coping with autism and other developmental disabilities. Part of her job is to provide encouragement to the families she serves. NOT to shoot down their dreams for their children. She has never met Rachel. She doesn't know how far Rachel has come. She doesn't know how smart my daughter is. She doesn't have any means of knowing anything about her or her situation. She doesn't know that we actually had a discussion to determine if her placement should be changed to put her in a less intensive environment. She doesn't know that Rachel spends part of every day in a typical pre-K classroom to learn how to interact with her neurotypical peers. All she knows is that Rachel is in the CAPP program.

I don't know if Rachel will receive her high school diploma and go on to college. I don't know if Simon will do the same. But I do know that I will not limit her based on her diagnosis. Other children with autism function in classroom settings and continue on to receive higher education beyond high school. And as a social worker working with this population as well as a mother to a child on the spectrum, she of all people should know this. I will not allow this (in my not-so-objective opinion) unqualified and prejudiced uninformed individual to limit my children's potential.


Footnote:
(1) This mission statement is literally copied/pasted from the website of this organization. Because of nature of this post, I have chosen to not provide the specific website detailing the name of the organization. However, these words are not my work and should be credited to this parenting group.