Autism Waiver

It’s really happening.  Simon being on the waiver.  Not only have we gotten the paperwork in the mail confirming his eligibility, but we’ve had our sit-down with our case worker and gone over what types of services he requires.  And what we can use as a family.  Right now my head is just swimming.

 

First, there’s “TI” (Therapeutic Integration).  This is generally a program where the kids would go after school and would serve as an “after care” program.  This works on things that can be addressed individually as well as in groups and can provide services as basic as teaching someone to become and stay organized to learning life skills you can learn in a classroom setting such as cooking.  There is a program at Simon’s middle school that can serve our purposes, but there are several others in the area and I need to determine which of them would provide the best fit.  He would attend such a program for 2 hours (probably nearly daily) at the end of a long school day.  That means his “work day” would be 9 hours long instead of 7.  He can’t keep his focus for more than an hour, so how is this going to help things?

 

Then there’s IISS (not exactly sure what the acronym is).  Basically, this is an intensive, one-on-one intervention between a provider and a child.  An example of IISS is ABA, but we know from experience that this won’t work for Simon.  Typically, this happens in the home or out in the community and coverage in the waiver is for up to 8 hours / day (maximum 25 hours / week).  Services are provided on a case-by-case basis in a treatment plan and must be with the same provider.

 

The other major thing we qualified for is Respite Care (up to 336 hours annually).  Basically, this is babysitting services, but only for Simon (neither Rachel nor Big Brother can be the responsibility of the respite worker).

 

All of these service types are potentially provided by different providers (sometimes there is overlap [as several providers offer multiple service types]).  So, my responsibility these next few weeks is to determine which provider(s) to choose to best suit our needs.  Which is a problem when I don’t really know what our needs are!  What should I be focused on?  Where is the greatest need?  What is the best way to use these services and still allow him to have time to relax and be the boy that he wants?

 

Today, the case worker suggested that we just start with TI services and hold off on IISS.  We can engage a Respite provider as well so that they can be put to use as needed.  But this way, Simon could have those 2 hours of services (or so) after school 3-4 days a week (which more than meets the minimum requirement for staying active on the waiver) and allow us time to determine what we should be doing and allow him time to adjust to the new higher level of expected focus that these various services will require without causing him too much stress.

 

I’m very grateful for these services.  I just don’t know what I’m supposed to do.  And meeting with the case worker didn’t exactly answer my questions.

 

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Reality Versus Perception

When I originally wrote this post, I had no intention of ever publishing it.  I bring up thoughts that no parent should ever think, especially special needs parents, in regards to their own personal effectiveness to do the best for their children.  But then I started thinking … I always claim that my blog (whether anyone reads my posts are not) is always honest.  If I decide NOT to publish something because that honesty makes me uncomfortable or afraid of what others may think or how others may react, how honest am I really being?

 

So, I’ve decided to publish it.  Understand that I originally wrote this post on June 25 versus when I published it on July 15.  As time has passed, things don’t seem quite so desperate to me as they did when I first sat down to type.  Maybe that’s why I’m a little more comfortable putting this out there.  These feelings haven’t gone away … I’m not sure they ever do.  But they are more manageable … at least for today.

 

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This morning, I asked the question on my personal Facebook page … “Reality or Perception … which one is more important?”  Some of the answers I received were that (1) reality is fact whereas perception is opinion; and (2) perception is often our own version of reality.  I think I have to agree with Number 2.

 

It’s hard work parenting in general, then bring special needs (times 2) with ongoing or nearing puberty into the mix in addition to parenting a now teenager … it very quickly can become overwhelming.  And there have been many changes to my life outside of parenting as I have been trying to take control my health and fitness over the last year or so, which have brought on their own stressors.

 

But being a special needs parent and caregiver pays a toll on a person.  Progress is often slow, almost to the point of being non-existent or moving backwards.  And often there are significant regressions.  When you spend so much of your time and energy trying to keep things moving forward, this can be extremely disheartening, to say the least.  And I am certainly not immune to any of this.

 

With everything that’s been happening over the last 6 months or so, I have had several people call me “Amazing” or telling me that I’m doing a “Great Job”.  And I’d be dishonest if I claimed that hearing this didn’t have the benefit of boosting my ego quite a bit.  But the time has come to say what I think every time I hear this (as much as it pains me to do so).

It’s a lie!  A BOLD-FACED LIE!!!!!!

 

Yes, you read that correctly.  It’s not in any way true!  I’m not “amazing” or doing a “great job” or anything else that implies something similar.  In fact, I’m terrible at what I do and feel nothing but guilt about it every minute of every single G-d – Damned Day!

 

If I was doing a “Great Job”, I wouldn’t have been ignoring what people have been telling me about my daughter for nearly 2 years … about how and why she’s been struggling, coming up with excuses for her.  I would have jumped in to understand what was happening.  I would have recognized that we need more help and sought out more medical advice or counseling ideas to help her to learn to cope. In lieu of this, I turned a blind eye to her ever-increasing anxiety.  I explained it away by simply saying that she was “obsessive” and that it’s just part of who she is.  And, when I finally “heard” what people have been telling me all this time, it had the effect of walking into a brick wall, just as it felt just the day that a doctor told me that she was “…..clearly on the spectrum” when she was 26 months old. The realization that this was so completely obvious to everyone working with her but not in any way to me proved to me that history repeats itself.  I was allowing myself to be blinded by the things I didn’t want to see.  I didn’t want to consider that something else might be wrong and that in ignoring all the signs, I was potentially doing serious harm.  In what way is that doing a “Great Job” for her?

 

If I am “Amazing”, how did I allow the IEP Team to place her in a program that I KNEW was WRONG for her?  Why couldn’t I speak up as I clearly knew that something was wrong in their actions?  Is my desire to hide her issues from the world so strong that I can put her through the possibility of going to a school that was going to hurt her?  Apparently, yes!  That doesn’t make me “Amazing”.  That makes me “Negligent”.  I tell myself (probably to make myself feel better) that eventually I did speak up and the situation was resolved (see previous posts for details).  But how could I sit there and let it happen in the first place?  Clearly, I am not “Amazing”.

 

And the list of examples just for Rachel can go on and on.

 

The list for Simon is at least as long, if not longer. I have always believed that it is the primary responsibility of a parent to teach their child to be able to live independently and be a productive member of society by the time they reach adulthood.  We recently learned that Simon has been deemed eligible for the Autism Waiver.  What exactly does that mean?  That means that if things don’t change, he will require full time “care” as an adult … in other words, INSTITUTIONALIZATION, probably for the rest of his life!!!!!  The waiver is designed to identify children who are on that path and help them to gain independence so that can escape such a fate.  That, again, is not “Amazing” or “Great Parenting”.  That’s “Incompetence”.  That is me not doing what is needed to give him the life skills he needs. That is me taking the easy way out because I just don’t want to (or at times, can’t) deal with the reality of situations and just choose to hide from the truth.  Perhaps this would be easier for me to face if he wasn’t considered to be “high functioning”.  In almost every circumstance, that’s a HUGE boost to how I feel about things (and Autism in general) … it tells me that he is (even if we don’t know how to do it) capable of learning the skills that he needs to succeed and thrive.  But because he is “high functioning”, the fact that he will benefit from a program like this is another reminder that I should be able to succeed in reaching him … more proof of my mistakes.

 

Why am I writing this out?  Because I can’t say it out loud.  Because I can’t face people when I tell them the truth. Because I am hoping maybe in putting it out there, even though I don’t plan to have anyone read it, it will have the effect of me saying it to someone and openly admitting my truth and my failures so perhaps I can learn from what I’ve done wrong.  Unfortunately though, as I have demonstrated my tendencies to make the same mistakes over and over again, I don’t have high hopes for doing a better job as their parent.

 

 

Return of the “R-Word”

And no, I’m not referring to the one that it is TOTALLY INAPPROPRIATE to ever utter!  I’m speaking of one that we embrace LOVINGLY in our lives …

 

ROUTINE!

 

School let out 3 weeks ago.  23 days.  15 weekdays of no organized activities.  We haven’t been “doing nothing” throughout that whole time.  We did take that first week to recover from the insanity that impacts our lives at the end of any school year, including that preparation for the drastic changes in routine.  We spent that week trying to organize goals for the summer … what needs to be completed, what we would like to do, etc.  We’ve also had some small things going on.  But nothing had a particular time table attached to it.

 

But that ends today!  ESY (Extended School Year) officially begins, which means Simon will be back in school in the mornings these next 4 weeks.  Rachel will also be going to ESY in a couple of weeks, but she has a couple of camps that address her needs and loves.  We haven’t done ESY for the last few years because there was an incident that affected Simon that made me question what level of supervision was being provided, but because of the change in school programs (and the fact that the kids are older and “more responsible” [yeah, not sure I fall for that one]), I was convinced that this would be wise for both of them this year.

 

Rachel starts her Social Skills camp later this morning.  We found this organization (Expressive Therapy Center) when we started looking for Social Skills Groups late last year / early this year when we discovered that Rachel was the means of her own misery when she was unable to interact with her peers when presented with social opportunities.  When I mentioned this place to her developmental specialist, she told me of a summer camp that they offered and we immediately made arrangements to sign her up.  She has been meeting with a group inconsistently these last few months (schedules [not ours, surprisingly] have been issues) and I have been assured that there are kids in this camp that are of comparable age and concerns so she should be appropriately paired.  This is the first time I’m trying something like this, so I look forward to see what results it produces.

 

Then next week, she’s off to “So You Think You Can Dance” camp, a camp run by the county for one week.  As we do not take dance classes over the summer (she deserves a break, even though I suspect she’d be happier if she continued going), I wanted to find something for her that would allow her to continue some dancing over the summer, but by doing something that was just FUN, not necessarily educational.  And this is what I found!  Again, this is our first time doing this program so I don’t know how successful it will be, but I figured with dancing, I can’t go too wrong!

 

Big Brother also starts going to camp this week (but not until later in the week).  He is returning to soccer after taking much of the spring off (he had broken his wrist early in the spring season attempting to make a fantastic goal save) while playing with kids considerably older than him — nothing dirty — just injured during normal course of play).  Then he’s off to learn to be “responsible” with one of the county camps that will train him to be a camp counselor potentially as early as next summer (imagine that … my son getting an actual JOB as he prepares to start high school).

 

But now, and for the next 4 weeks, we have some structure returning to our lives!  We have direction!  And we have some predictability!

 

TIME TO BREATHE!

 

 

From “Point A” to “Point B”

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In my life, maps rule it all!  How we travel from “Point A” to “Point B” is of upmost importance.  Directions can be dictated or presumed.  They can be the shortest way possible.  But what matters is not the destination but on the roads we take to get from one place to another.

 

I am convinced that Simon knows EVERY ROAD in Montgomery County, MD.  He knows how they interconnect and how to plan his route based on that knowledge.  And his routes are NEVER wrong!  However, they aren’t necessarily the most efficient means of making any trip.  And there can be no variability based on traffic or anticipated red lights or accidents (or known speed cameras that I would like to avoid) or any other potential obstacle.

 

For years, Simon has insisted on dictating on exactly how we travel.  Usually, he makes announcements as we make various turns (for example, as we are turning on the highway).  For the last few months, we have made it clear to him (both in words and deeds) by not acknowledging him when he starts doing this.  Often he incessantly will tell us what we already know and we have to remind him that we don’t talk about directions but  we just go wherever it is that we are going.

 

I put up with this.  I’m used to it by now and we all know how the “game” works.  But for the last couple of months, this has taken a very annoying turn.  He insists on traveling a particular set of directions.  Sometimes I have the patience for it and other times, I don’t.  When I don’t, I point this out to him and make it VERY clear that if he insists on going one particular set of directions, I will intentionally go a different way.  Usually when this happens, I am already at the end of patience after a long series of things that have happened leading up to this moment (not always, but often).

 

What drives me CRAZY is when I DO decide to abide by his requests and he starts throwing a fit in the car because I do exactly what he tells me to do.  For example, this afternoon I drove Big Brother to a friend’s house so he can hang out for a few hours.  I took Simon with me as (to be honest) I don’t trust him to stay home without supervision for more than a couple of minutes and I knew I would be gone for at least 20 (traffic and conditions permitting).  We dropped off Big Brother and were heading home and Simon requested that I drove home on a particular road.  I decided to acquiesce.

 

When I made a left turn out of BB’s friend’s road, Simon throws a FIT!  I’m confused … he asked to go home on a particular road and we have to make a couple of quick turns to get to said road.  I remind him that he wanted to drive home this particular way.  Yet he’s screaming that we’re not going on a different road (which, for the record, does meet up with the desired road, just not in the most efficient way).  And the screams continue.  ALL!  THE!  WAY!  HOME!!!!!

 

People may think that I’m wrong to not abide by his requests when he dictates how to get from Point A to Point B, especially when I’m not terribly stressed for time.  But I get tantrums whether I abide by his requests or not.  I can put up with the screaming when I ignore his directions.  It’s when I’m going the way he wants and he screams his head off anyway that I feel like I’m going to LOSE MY MIND!

 

Am I just crazy?!?!?!?!?!?!?!?!?

 

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Bar Mitzvah Time

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On April 28, 2018, Big Brother had a very special day.  After turning 13 on April 11 (an important age in Judaism), he was ready to take his place as an adult in the Jewish community.  Yup, he had his Bar Mitzvah.

 

Big Brother had been specifically working towards this for the entire school year.  He would spend an hour every week working one-on-one with a tutor starting the weekend after school started in September and would then practice for at least 20 minutes/day (once he realized that he couldn’t get away with less [he is 13 after all]) 5 days a week.  He was able to do this while working on other things that didn’t require his direct attention, but I was able to tell listening to him week to week that he was truly putting in the effort.

 

He designed his own service project working with kids with special needs (generally Autism), helping them in athletic pursuits.  He helped an Autistic child learn to swim during the summer, knowing that kids on the spectrum are attracted to water and wanted to be sure that this child would be safe should he find himself in an unfortunate situation.  He also helped with a soccer program that came to our elementary school to work with the Learning Center (Open Door Sports).  As Big Brother LOVES to play soccer and generally plays with several teams, he had fun trying to share the joy of the game with a group of elementary-aged children while getting to play the game himself!

 

As a parent, I have to wonder how much his brother and sister affect his personal development.  They are always a part of his life (and as they are so close in age, he really doesn’t remember a time when they weren’t there).  And even though we didn’t know that they were “Autistic” until they were 26 months old, we were already addressing some of their issues in our own way before then because we knew of their “quirks”.  Autism as a word has been a part of our lives since Big Brother was a month shy of 4 years old and we have never done anything to hide the word from any of our kids.  When Big Brother was 5 or 6, we actually sat him down and explained why his brother and sister were different than others and truly explained to him what Autism is.  And he always embraced it (and them) for who they are.

 

As he is growing older, we are starting to see him make more personal choices as to where he would like his life to proceed.  Following his Bar Mitzvah, he signed up to be a teacher’s helper at the Religious School.  As part of the application, he had the opportunity to choose what type of job he wanted to have and with what age group he would most prefer working (no guarantees of getting such an assignment, but a chance to have a say should the opportunities be available).  He surprised me by indicating that he would like to work one-on-one with a special needs student as his first choice.  As this is how he lives his life, I would have expected him to choose something different, but no.  He sees the need to help kids like his brother and sister and would like to do his part.  And he feels that, since he is already familiar with some of the issues facing a child with special needs, that he is perfectly suited to be a helper to such a student.  And this is but one example of the heart he has showed us as he continues to mature.

 

 

 

Sometimes I wonder what I have done to deserve such a special child as my oldest….”Big Brother” as he is called in my blog.  And I think I nicknamed him well!  For that is EXACTLY what he is … he looks after his brother and sister to be sure that they are always protected … just like you would expect from your own “Big Brother”!

What “Autism” Has Done To ME

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These last few months have been really hard for me on many levels.  In my last post, I spoke of my “IEP HE!!” period trying to get Rachel’s middle school placement straightened out.  But it’s been so much more than that.  Today, I found myself thinking about all the things that have happened since Rachel and Simon were 26 months old and we first learned they were “clearly on the spectrum” (see, I still remember the exact phrase that the doctor used when telling me this — I don’t think I’ll EVER forget that moment).  But for a long time, we’ve been managing and getting through the moments and giving them all the help that we could possibly manage.  But what I hate about this diagnosis the most is what it has done to ME.  They were always the same … learning of their condition never changed who they were or the issues that we were already facing.  But the consequences to myself are constant and I can’t help but wonder what life would be if the word “Autism” never entered our lives.

 

I realized something specific the other day … I am always apologizing for my children.  They do things that are outside of their control and most of the time, I’m assured that apologies are NOT necessary (depends on who I am speaking with, of course).  But the truth is that, at age 11, there are certain expectations that they are not capable of meeting.  And most of the time, there are many around who just don’t understand what Autism is or they are unaware that they are on the spectrum (however, that last part is rare if they know us at all).

 

I try to make sure that they are accepted everywhere and will keep them home when I fear that I will be unsuccessful.

 

I have sheltered them far more than I have sheltered Big Brother who is always looking for reasons and excuses to explore the world.  And I encourage him to the point of practically pushing him out the door!  But for Rachel and Simon, I keep them home and safe.  And when they do go out into the world, even when it’s as simple as walking to school, I make sure that I keep them in my sites the whole time until they are walking into the building and directly under someone else’s care.  Now this is done out of necessity.  We have faced elopement issues in the past and Simon has demonstrated that he will return to this behavior when he sees an opportunity (although it has been a while).  But I can’t seem to forgive him for it and I am, let’s call it what it is….AFRAID, of letting him go and live his life.

 

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I have spent most of this year addressing Rachel’s feelings of isolation.  Since November, she has been claiming that she’s “lonely” at school.  At first, Momma Bear came to the surface, ready to attack whoever was bullying my child and making her feel so isolated.  Fortunately, I was able to keep that instinct at bay until I had a chance to find out what was going on and realized that it wasn’t the other children (or teachers) at school who were causing the problem, but it was Rachel who was isolating herself from her classmates when given the opportunity to be social with others.  Once this realization was made on my end that she was causing her own problems and the staff realized that she was so unhappy, we all put steps into place to minimize it, but were never fully successful until the last week or so of the school year.  And even then, it was only a partial success because she would still go off by herself at recess even though she would sit with her friends in the lunch room.

 

I am AFRAID.  Of everything.  And ALL THE TIME.  I’m afraid of how they see the world and how the world sees them.  I am afraid of the POSSIBILITY of things going wrong.  They have never been bullied, yet that is my biggest fear for them when they start middle school in September.  This fear is ALL CONSUMING and I can’t seem to find my way free of it.  And I HATE the person who this fear has created!  I question what I could have or should have done differently (even though I intellectually know that their diagnosis is not my [or anyone else’s] fault).  It has taken away my confidence in my ability to know what is best for my family.  You see, I had always previously looked at myself as a positive force who could always see the good in a situation.  But when it comes to my younger children (Big Brother is spared from this, fortunately), all I can see are the things that can go wrong.

 

And it’s PARALYZING!

 

I don’t know how to get myself out of this.  And this has been going on for so long that I can’t remember life any other way.  I genuinely love my kids … with all my heart and I don’t want to change them (Autism and all).  But that doesn’t change the unpredictability that goes with such a diagnosis.  You would think that, after all this time, I would have learned to deal with it all.  But the truth is, I never have.  And with all the other changes that has happened in my life (personally) over the last year, it’s really starting to take it’s toll.

 

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I need to write this out

Today marks the end of a VERY long 7 (or so) weeks.  I’ve been in my own private circle of IEP HE!! and I think I’ve finally figured out how to climb out of it (after a long ugly cry planned for tonight).

 

Since the day we returned from Spring Break (April 3 [and note today’s date is May 21]), my life has seemingly been centered around IEPs.  In that time, many other things have happened (wonderful things … that’s a story for another post that I need to write), but underlying everything was this pull of what’s happening in my own private IEP world.  And it’s been true for both of the twins.

 

Literally, the day we returned from Spring Break we had Simon’s “Re-evaluation Meeting”.  For those of you not familiar with what this means, this is when we review all the testing that they did to determine what an IEP student’s level of need really is.  This is when diagnostic codes are assigned and determinations of what level of intervention is needed to maximize the student’s likelihood of success.  Basically, it’s when you sit in the meeting and they tell you all the things that are WRONG with your kid.  I know it’s necessary.  Knowledge of where their deficiencies lie is the the first step in determining how best to fix things.  But as a parent, sitting there listening to them point out that your 5th grader is reading on a first grade level (in terms of comprehension, not decoding) and suffers from what appears to be a plethora of diagnoses is very difficult to do.

 

But just as I was preparing to walk into this meeting, I ran into Rachel’s case worker who wanted to confirm my availability for a meeting about Rachel the following week (April 11, which happens to be Big Brother’s 13 birthday [with Bar Mitzvah pending … again, another post I need to write]).  Apparently, the notice had been sent home, but I hadn’t seen it and she wanted to know if I was coming.  As my mind was so focused on this meeting I was dreading (as I had done one of these for Rachel the previous year and knew what I was stepping into) and about to step into, I agreed thinking that we can just get this out of the way.  Afterwards, I realized that may have been a mistake ….. we had already done her annual review and the only thing that really would be discussed would be middle school placement.  I had not yet visited any of the programs (planned my visit to 2 of the programs literally 2 days after this newly scheduled meeting) and I really hadn’t figured out how she would be successful at our home school even in a co-teaching environment.  I just hadn’t taken the time to figure this out, even if I had been starting to think about it.  So I emailed her case worker telling her that we should still have the meeting, but I made it clear that I wasn’t ready to make a placement decision until after I had visited the programs and knew / understood my options.

 

That was my biggest mistake.  After realizing that I hadn’t visited these programs yet, I should have cancelled the meeting.  That way I wouldn’t have to worry about things spiraling out of control.  But I figured I could get the information from everyone in the room regarding why they felt their preferred choice would serve Rachel best (whatever that choice happened to be) and I could then use that information in making my own decision as to what the most appropriate program would be.  But that’s not how the IEP world works.  You schedule a meeting, decisions are made.  And they placed her in the “Home School Model” at our local middle school because it was felt that they could meet her academic goals at that program.  And this kinda happened (at least this is how it felt to ME) with me sitting there with a blank stare of my face feeling like I was having an out-of-body experience.  Needless to say, I was just numb by the end and just didn’t know what to do. I went along with it because I really didn’t feel I had any other choice.  But the whole time, I was mentally shouting to the room and to myself, “WHAT THE EFF ARE WE DOING RIGHT NOW?!?!?!?!?!”.  Note that no words were actually said … I don’t think I would have been able to get them out even if I tried.

 

2 days later, I went to visit the two self contained programs at a nearby middle school.  I was really looking at these programs for Simon, but was considering them for Rachel too.  As expected, one of them was clearly my best option for Simon.  This program can address his academic and social needs as well as organization and general well-being issues.  And it’s a fully academic program so I know he is being prepared for high school at least as far as academics are concerned.  But the other program …. that one felt right for Rachel.  And I mean it REALLY felt right for Rachel.

 

But Rachel had already been placed 2 days previously.  To a different program.  And they weren’t even considering this program for her.  I mean there were no representatives from this program at her meeting.  And there was no discussion about whether it would be a good fit.  The only option we spoke of was “Home School Model” which was her current placement (with the exception of reading and writing where she is currently in the Learning Center with Simon to address her comprehension issues).

 

That’s when I started to fall apart.  Everything up to that point had been manageable.  But on the drive back to the elementary school to work on a project that I was doing for the PTA, I began to cry in earnest!   How can I fix this?  Do I need to fix this?  Is this other program really a good choice for her?  Or is this just me retaliating against the school for making a decision when I wasn’t ready?  When I got to the school, I started working on my project and tried to put this out of my mind.  But I just couldn’t.  I kept rerunning the whole thing (the meeting as well as the visit from that morning) over in my head and tried to think about what I was going to do.  I knew I needed to do something…..just wasn’t sure what the best option was.  Then it came to me…..what if I asked to retain Rachel?  We could work on the skills that she needed to be more prepared for middle school.  Did I believe this was the best option?  No.  But in that moment, I just couldn’t see any other way out of the situation.  I mean the team had already made it’s decision, right?  They weren’t going to change their mind.  And also, as little as I want to admit it, part of this option gave me the chance to hold off the idea of sending her (and of course I was considering it for Simon as well) to middle school and putting off that nightmare for another year.

 

I brought this up with the school principal, mainly to find out what the process in requesting this would be.  As she wasn’t the administrator in on the meeting on the 11th, she didn’t witness the meeting itself and I filled her in on my perspective (which may not have been what actually happened … just from my viewpoint) of what was discussed and how the decision was made when I wasn’t really ready to make such a decision.  And, now the the decision had been reached and I got to see what my options were, I was concerned that it was the WRONG decision.  She put me in touch with someone else and by the end of the day, Rachel’s placement decision had been pushed to the side and we agreed to set a meeting to review her placement with more of the programs represented in the room so that a better picture could be gleaned and everyone would be in a better position to make a placement decision.

 

Fast forward 5.5 weeks to today.  In that time, there were several events involving Big Brother (which I won’t get into right now) and we had Simon’s placement meeting (uneventful, but yet another IEP Meeting with all the stress that relates to it, especially given the knowledge that the person who made the rushed decision for Rachel would be in the room).  This time, the school principal made sure that she was the administrator in the room, however (longer reason as to why I suspect, but I’m already rambling quite a bit here and this post is more concerned with Rachel rather than Simon).  I’m not sure if that made a difference in reality, but it definitely made me feel more comfortable with everything.  I also had gone to visit our home middle school to see if I was making a mountain out of a molehill and that Rachel would be successful there.  And I had several discussions with both the school principal and Rachel’s case worker about what was the right thing to do to best help her (and myself) get through this process in terms of her actual placement and the ongoing question of retention.  Once again, the meeting was scheduled so that the principal could be the administrator in the room (this time it was very much intentional) as well as making sure that the other programs were represented.

 

Walking into the meeting, there was (as is often the case) a snag.  The representative from the specialized program where I felt Rachel could be a good fit wasn’t physically present.  She was an active participant in the meeting over the phone however, but again walking into the meeting, knowing that a key representative was missing, filled me with dread.  They did make sure that I was OK with this situation before we started, but to be brutally honest, I just needed this process to be done and over with and as long as she would be an active participant, I felt I really had no choice but to say yes.  We had a discussion and I explained that I really didn’t know what the right choice was, a fact that has had me very much on edge these last 5 weeks as I feel it’s my responsibility to know what the right answers are by the time I walk into an IEP Meeting, and decided to spend much of the meeting listening and questioning the reasons behind the choices that were being made.  This time, even though I was going to let them guide the decision, I was going to be sure to be an active participant rather than someone just sitting quietly on the outside feeling like I was having another out-of-body-experience like I did the last time.  The main reason I did this was because I expected the decision to remain the same.  And, even though I wasn’t sure if the more specialized program was the best option, I now really needed to understand WHY she would be better off in a more mainstreamed setting when I knew this other program was out there that would suit her needs.

 

As we discussed her current levels and behaviors, the decision was made to move her into the more specialized program.  Her anxiety these last couple of years has been increasing, her rigidity has always been an issue and her inability to adjust to changes in routine or expectations has impeded her ability to be successful in school and receptive to learning.  This program can help her learn to deal with these issues.  And universally, everyone felt that this was the better program for her.  And that was with me not even outwardly voicing my opinion, although I wouldn’t be surprised if my approval of this decision was strongly implied by the way I was questioning things throughout the meeting.

 

In the end, I was vindicated.  I was right that the wrong decision had been made initially. And if I didn’t start this process, that decision would have stood and a huge mistake would have been made.  And one that I don’t know if Rachel could have recovered from.  And my guilt of not saying anything would be something that I would have to live with.

 

But right now, despite knowing that, that’s not what things feel like.  Everything that has happened in these last 7 weeks is just sitting on my shoulders with such a burdensome weight that I feel about to be crushed.  I plan on doing something about that later today…..I have basically “booked” time for myself to just sit and cry and let everything go, when I don’t have to worry about taking care of a child or putting on a face for anyone else.  It’s just going to be me, my car radio (as loud as I dare), and approximately 35 minutes of just reacting.  Hopefully, when that’s done, I can finally feel like I can move on with everything and go back to enjoying the moments.

 

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