Changing Sites, Changing Titles, Changing Focus

Hello everyone!  This is Ilene from the blog “My Family’s Experience With Autism”.  I have been blogging (inconsistently as of late) on this blog for some time (since June 2009, to be exact).  But for the last year or so, I just haven’t been keeping up with things.  I think at least part of the problem, is that I’m just not comfortable with what I’ve been seeing, saying, or doing.

So, the time has come to make a complete change.  I have started a new blog here on WordPress.  I’m changing the name to “A Day In The Life Of the Crazies”.   You see, my blog is really not just about Autism.  It’s not just about the twins.  It’s about my family in general.  And it’s about how we go about with every day things, just like everyone else.

So, now that I’ve made this realization, I decided it’s time to make the big switch.  It’s time to play with a new website.  It’s time to see what this blog can become.

Welcome to “A Day In The Life Of The Crazies!”

The Bittersweet Nature of (Special Needs) Parenting



Earlier today, a friend posted on Facebook about the nature of watching her children grow up and the ways in which they need her changing as they continue to grow. She recognizes the truth that her children will ALWAYS need her in some capacity, but she is both happy and sad about how things are changing.

I agree with her. I see this in Big Brother who will be starting High School (officially) next week. I love seeing the adult he is becoming; the free spirit and kind heart he possesses and how (and when) he chooses to display this; the independence he has been claiming at every opportunity for years. He no longer needs me to care for his every need. I can leave him home alone for periods of time with little to no worry about what I will find when I return. I can even leave him “in charge” of his brother and sister and be confident that they are all in good hands. At the same time, I remember the little boy who came crying to me when he discovered that our dog got hold of one of his favorite lego sets and chewed it to pieces and how hard I had to work to find a replacement set (as it was no longer in production). I still see the thin-skinned child who couldn’t tolerate any teasing as he took everything said to him so personally and how he took that sensitivity and turned it into something special in his ability to care for and about others. I’m not saying that he’s perfect … he is 14 and still has quite a bit of growing up to do. And he is claiming to become a <shudder> “Republican” <shudder> (but promises to NEVER be a Trump-supporter [at least there’s something positive in that statement]). So I guess I haven’t done EVERYTHING right :). But overall, he makes me proud and makes me feel like I have done this part of my job well.

I wish I could feel the same thing about Rachel and Simon.

For slightly over a year now, since Simon was approved for the Autism Waiver, I realize the truth that faces my family. We always knew, since the twins were 2 years old and first diagnosed with Autism, that their path to adulthood would be different. That they may never be “independent” and always need direct parenting on a daily basis. We knew the possibility that they may never be able to sustain a relationship to find someone with whom they can spend their lives; we knew that they may never have the ability to parent; we knew that they may never truly be able to leave home (unless it meant going to a place that was comparable). This isn’t to say that this is what is GOING to happen, but we knew in the back of our minds that this was our reality. After the waiver came through, to me this was no longer a distant “it MAY happen but I’m not going to worry about it now” scenario …. this became the likelihood for Simon (slightly less so for Rachel, but if it’s true for Simon I have to be prepared for this to be the case for her as well).

There is only 21 months age-wise between my children. Yet maturity-wise, they couldn’t be further apart. And that age gap grows exponentially every time I look at them. It isn’t just Simon that I see this, but in both of them. I watch my friends post about their children growing up, and I too can say that my kids are starting 7th and 9th grade. And with my 9th grader, the stories are similar to my friends whose kids are the same age. I can’t believe he’s growing up … college is just 4 years away …. you get the idea. For Rachel and Simon, they look like they are growing up … and physically they are. But they still need me in the way that Big Brother still needed me when he was 6 years old and came crying to me when his teacher yelled at him when he broke a pair of scissors. For Big Brother, he made it very clear to me when he wanted me to step back and let him handle whatever situation arose and when he felt he needed my (or Dad’s) help. With Rachel, everything requires my help. And for Simon, I have to be a “helicopter mom” so that I can know when to step in versus when to stand back, and my involvement has to be direct and potentially adversarial (although I try to avoid that as much as possible).

And this will likely never end.

So, I get to hang onto my babies … forever … but the trade-off is I never get to watch them grow up.

A Very Long Year

Today, it’s been a year.

12 months.

52 weeks.

365 days.

I know it’s been a year because it started on Big Brother’s 13th birthday.

A full year of doubt.  A full year of questions.  A full year of second guesses.  A full year of distrust of those who are working with my kids.  A full year of wondering what I’m supposed to be doing.  A full year of fear and dread in pretty much everything I do and touch.

And the worst part is the guilt because I KNOW that things really aren’t so bad … I have several friends who are going through much harder and stressful things than I am … yet I cannot seem to find my way out of this “funk”.

There have been good things that have also happened this year.  But I can’t stop focusing on the negative.  Even when something good is happening, there is always a nagging voice in my head that reminds me of all the things that have or are going wrong, so I’m I can’t just stop and revel the moments.

At this point, I’m just tired.

I need this to end.  I need to start trusting again.  I think that’s the key.  How can I relax about anything when I don’t trust the people who I am entrusting my kids to?  So that’s the first step.

Being “Jewish”

What does it mean to be a Jew?

This is a question I have been asking myself (in my own ways) for over 2 decades … since I met Dad … since I knew I was destined to spend my life with him … someone who feels very closely tied to his Christian beliefs. And especially after we made the decision to have a “Jewish Home” when we first became parents, these thoughts have always been there (just mainly in the background). But for the last (approximately) 18 months, it’s been rising to much closer to the surface. I’ve been exploring this (reasonably privately), trying to figure out where my version of “Jewishness” fits in my (and my family’s) life.

At some point not long after my own Bat Mitzvah (can’t remember if I was in 8th or 9th grade), my Sunday School teacher had everyone in the class come up with 3 descriptive words for themselves. Almost everyone in the class included the terms “American” and “Jewish” among those three, with there being much more variability in the 3rd word. Some people put “Jewish” first, others “American” and to be honest I don’t remember which I did, but I do remember these were my first two words. And I remember there was a discussion that followed about how important it was to find these general descriptive words if we were to ever fully understand ourselves. I don’t remember any more of the specifics of the lesson (I don’t think I saw it as particularly important at the time), but this much has always stuck with me.

Being “Jewish” has always been a cornerstone of who I am. But religiously, I just never really felt connected. I consider myself more “Agnostic” in terms of my belief in G-d (although I do feel [at least a cultural] sense of reverence). I am definitely NOT a creationist, and the miracles described in religious texts I have always just seen as stories rather than actual events.

So, why is “Being Jewish” so important?

This question became very important to me while Dad and I were dating. How was I to explain to him why this was so important to me when I didn’t really “believe” in what was taught to me? How can I justify such fundamental differences that could affect our lives together when I didn’t understand them myself? Funnily enough, the Rabbi who officiated my Bat Mitzvah was a Rabbi in the area I was living at the time. When I discovered this, I made an appointment with him to talk about why this might be true. And he said something to me that I found truly PROFOUND … Judaism is the RELIGION of the Jewish PEOPLE. Belief in Judaism and being Jewish do not have to co-exist. This is why so many people consider themselves “Culturally Jewish”. I don’t think I looked at myself this way before that … but that was definitely the truth of it all. I was BORN to the Jewish people. And consequently, my CHILDREN were also to be born to the Jewish people. We do not have to believe in Judaism in order to be Jewish. Being JEWISH is not faith-based … JUDAISM is faith-based! And all of a sudden, this whole confusing subject became so much clearer to me!

I think all of this started to really MATTER to me as Big Brother’s Bar Mitzvah was approaching, but even then it remained as part of the background. We went through with his preparation and service and I watched him make connections to his own “Jewishness”. And this is something that he is continuing to explore as he prepares for Confirmation in about 15 months, and then beyond.

Today, we had the third (and last) family planning meetings for Rachel and Simon’s B’Nai Mitzvah (along with their whole class). This is something I went through with Big Brother too, but with him it was so much different. First of all, it was just me rather than me and Dad (Dad stayed home with the twins while I went to the meetings). Perhaps it’s because they need so much more hands-on work by me and Dad, but working with them on these exact same things that I worked with Big Brother, for some reason, this time understanding my feelings about religion, or at least my “Jewishness” is so much more important to me than it was a couple of years ago. I’m finding myself questioning what all of these things mean to me and the roles they play in my life. And I don’t really have an answer.

But I’m starting to realize that it’s OK to NOT know all the answers to these things, because they are always changing. As I learn new things, my views change, and one’s connection to religion is definitely something that grows and / or changes over time. I don’t know if I will EVER feel a deep connection to Judaism, but I do know that my connection to being a Jew is very strong and will continue to be one of the key words I use to describe myself, just as I did when I was Big Brother’s age.

Here I Go Again ….

Once again, I am using my blog to help me to organize my thoughts. So, if you are reading this post, know that is my intent and just go with it!

It’s been a crazy week or so in my little corner of the world, mainly based on the antics of my 2 boys (yeah, since when has RACHEL been my “easy” one?). Simon’s issues are mainly a continuation of what they’ve been for a while now, so for purposes of this post we’ll call him “Status Quo” (again, how scary is the concept that Simon and his wanderings would be considered Status Quo). It’s Big Brother that I’m currently going NUTS over!

I am very fortunate that I have 3 very intelligent children. Rachel and Simon have their issues in the world of academia, but no one ever questions their intellect. Big Brother, who does NOT have the diagnoses of his brother or sister, has always thrived in school. He has been so successful that we (myself, Dad, AND Big Brother) feel that he would do well in the high school magnet school programs offered by our county school system.

The application process to these programs is quite intense and extremely competitive, but he wanted to do this. He took the entrance exam in December (CogAT) and without even taking a single practice exam (time snuck up on us and he never had the time), he scored remarkably high (99th percentile nationwide on 3 of the 4 scales, 90th percentile on the 4th). He takes all honors classes and is studying Geometry as an 8th grader (having already taken a year of Algebra). He is currently taking his 3rd full year of French and takes all the top level courses that are offered to him through his school. Additionally, he attends religious school and had his Bar Mitzvah less than a year ago. With this top-level loaded courseload, he has a near-perfect GPA (all A’s and a single B in English from the first marking period this year [which he improved to a A in the 2nd marking period]) since starting middle school 2.5 years ago. In addition to maintaining his top grades, he plays soccer year-round, has earned (officially) 169.5 SSL (Student Service Learning) volunteer hours (high school graduation requirement is to earn 75 hours between leaving 5th grade and high school graduation), is always involved in 6-8 extra-curricular activities (both academic and non-academic in nature), and is preparing to work on his Congressional Bronze Award, with the current thought of helping individuals with special needs. And with this incredibly busy resume of activity, he still has time to play with friends, spend time on his computer and now he has taken on the challenge of composing orchestral style music!

He applied to 2 programs through one school and a 3rd program associated with another school. And we waited until the schools contacted us with their decisions.

And the verdict ..

Wait Listed to the single program at the second school (full high school International Baccalaureate [IB])

Rejected from the 2 math / science based magnet programs


Based on the information included in the respective letters, the IB program was far more competitive! And the more we have learned about these programs, the more we realize that it is the 2 magnet programs where he belongs.

I am appealing this decision. I not only feel they made a mistake here … I KNOW it!

What makes me most upset about this (and I just realized it before sitting down to write this post [which is why I decided to write it in the first place]) is that this is ALMOST EXACTLY where I was last spring with Rachel’s placement. But this time it feels worse …. then I truly didn’t know what the right thing was whereas here I DO! I KNOW he belongs in these magnet programs (not sure which one is better, but it needs to be one of them). And since he has been rejected versus wait-listed, they are no longer willing to even considering him for admission to either program. Our woes last year centered around my lack of certainty of what was the correct course of action, and then how to make the change, even though I still wasn’t fully convinced of what the right thing really was. This time, I DO KNOW! Big Brother belongs in this program. And everyone I speak with seems to agree … even people associated with the program who have no part of the decision-making process.

I have now looked at the appeal form that I have to complete … there is no way to appeal the decision based on my belief that they made a mistake. There needs to be a concrete reason for the appeal. But no one will tell me why he didn’t get in, so I don’t have anything concrete to support my request. Yet people agree that I need to appeal this decision as I’m so convinced that it’s wrong.

Fortunately, Dad considers himself “fluent in management”, so I’ll be putting him to work helping me to find ways to justify this request. And then we’ll be back to “waiting”.

I just know that I cannot have the same experience as I did last spring and come out of it with any level of sanity. Big Brother is supposed to be my easier child when it comes to school issues. But the reality is, he’s still my kid and he is going to get the same fight that Rachel got last year during her placement issues and that Simon is getting right now in dealing with his behavior issues.

I just need school-related parenting challenges / issues to go away for a while so I can simply parent my kids. And even though I know that will probably NEVER happen, I was really hoping I would be able to escape them in at least THIS child of mine!

Oh, well … that’s not the way my world seems to work!

When You’re NOT Crazy …



Sometimes, thinking that you are crazy or overreacting is a good thing. It gives you the comfort in knowing things are NOT as bad as they seem.

But what happens when people confirm that you are NOT being “crazy”? What goes through your head when people confirm your potential paranoia is REAL and not imagined?!?!

That’s my life for the last month or so. We have been experiencing potential safety issues in Simon and my brain just keeps taking me to the next step. What will happen the next time there is a similar incident? What will he do? How dangerous can / will he be?  What will the school do to prevent it? What can I do to prevent it?

I’ve written about his attempts to leave school. I’ve mentioned how he actually made it home once. I’ve written about how I held a conference with his case worker to try and make sure this doesn’t happen again (even though I failed to leave the meeting with any confidence in the resolution of that). But since that meeting, I have talked with a couple of people familiar with both the situation and with Simon, and they both assured me that my fears are definite possibilities.


I am planning on chaperoning his trip to Outdoor Education in March, where he will he will be spending 3 days / 2 nights in a camping area walking in the woods.  I HATE chaperoning, and I HATE camping even more, but since I have concerns of school staff keeping him contained in the controlled school building, I have to go and be sure that he remains safe when he (along with approximately 85 other 6th graders) will be spending this time in the woods!  I attended the information session a couple of days after the meeting with his teacher, and spoke with the liaison from Rachel’s program (who helps to run Simon’s after-school program) after the presentation.  The school principal saw me speaking to this teacher and assumed I was questioning whether Rachel would do well at Outdoor Ed, but we explained to her that Simon was the greater concern (for safety reasons).  After mentioning this, I could see the principal’s doubts that there really was an issue (and not just “Crazy / Overprotective Mom”), but the teacher explained that there was “cause” and a legitimate concern, with that sideways glance that implies “we’ll talk later”.  This exchange failed to comfort me, but again, solidified my worst fears.

Then a week later, I met with the person who writes Simon’s Treatment Plan for his specific one-on-one therapy covered by the Autism Waiver.  I knew we needed to add safety goals to the plan (as there currently are none as we didn’t see a need for them when initially writing the plan before school began).  I explained what had happened during the previous few weeks, and the look of alarm in her eyes was more frightening than anything.  When I mentioned some of my concerns, she made it very clear that my worries are valid and that we need to be sure that Simon knows what to do should he choose to act in an inappropriate way.  We talked about creating social stories as well as taking him out into the community and teaching him some basic road and parking lot safety so, if he were to leave school property, he would know how to keep himself safe.  Now I am just completely nauseous with worry and concern.

And the day after I met with the person from the waiver, I learned of another incident at school.  He never left the building.  I’m not sure he ever intended to.  What I do know is that he left the classroom and ran through the school to the main office.  Then he entered the school principal’s office (so now she has SEEN for herself that we have an elopement issue [following up on what we talked about during the Outdoor Ed information session]).  But the main office is right by the main entrance to the school.  Was it his intent from the beginning to go to the office?  Or was he trying to leave the school and recognized that he was being chased by his para-educator and that he wasn’t going to get far if he DID leave the building so he made a detour into the office (I haven’t brought up this possibility to his teacher / case worker when she called to tell me about this incident — it didn’t occur to me until later and now I’m scared to bring it up).

On the positive side (as I’m trying to remind myself), at least I am now being directly informed of events happening in the school, so that’s an improvement. But this is 4 incidents in less than 3 weeks.  How many more will there be?  And how frequent?  Will any of these put his or someone else’s safety in real jeopardy?

I can’t even begin to mention all the possibilities that have been running through my head for the last several weeks since this began.  When it’s just simply my “paranoia”, I can tell myself that I’m just overreacting and things are going to be fine.  I can tell myself that he has learned his lesson and there will be no future attempts to leave the school.  I can tell myself that at worst, he will just try to get on the bus and return home and that he will remain safe.  I can convince myself that there is nothing to worry about … that I just need to teach him that he needs to remain where he is expected to be and everything will be fine.

But that’s not the reality of things.  This problem has not gone away.  And, even when we aren’t seeing it, I know he’s thinking through how to implement a plan that will allow him to leave the school.  I can’t keep him home over the “possibility” of him acting on these impulses.  School is where he receives almost all of his services.  Additionally, the Autism Waiver is implemented through both DHHS and the schools … if I were to withdraw him from school would his eligibility for the waiver, and consequently all of the services provided by the waiver, disappear if he is withdrawn?  And I know I am not capable of home-schooling him.  I (personally) don’t believe in the benefit of home-schooling anyway, except for very rare and unusual circumstances (and I’m frightfully aware that those very limited circumstances are beginning to apply to my family).  Additionally, how would I explain this to Rachel, who HATES going to school why Simon is staying home and she is not?  And we won’t even get into what Big Brother might think of all of this.

So no, I’m not crazy.


I “Effed” Up

2012-07-02- effed up

Today was the day I referred to in my last post. I had a “conference” for Simon scheduled from 9-9:30 and then Rachel’s annual review at 9:50. This is the first time since their initial IEP Meetings (about 2 months before their 3rd birthday [note, they are 12 now]) that we had any meetings on the same day, much less back-to-back. This was also going to be the first time Rachel participated in her own meeting, starting to learn the process of advocating for herself. And we talked about what this meant over the weekend, and she seemed ready and happy to have this experience and opportunity.

As I just described for Rachel, this is a day for which I did seemingly everything right. I went through the reports. I reviewed the “draft” IEP for Rachel (EVERY detail). I spent the 3-day weekend trying to relax and not obsess (TOO much). I even went out to see a movie yesterday afternoon!

I went to bed at a reasonable time and woke up mostly refreshed. I got the kids ready for school with all the supplies they needed, even making sure that arrangements for after-school plans were in place (our Tuesdays are I-N-S-A-N-E!!!!!). After everyone left, I even had time to take a hot shower and really try and relax a bit as well as make myself a cup of coffee to sip throughout the morning (I have a REALLY GOOD insulated cup). And I left the house at the exact time I was planning on insuring I would arrive early, but not TOO early.

And as I was driving, I thought through what I was going to say during Simon’s conference (as that was the first meeting).

I was PREPARED. I was READY. I was IN CONTROL. All three of these things almost NEVER exist simultaneously in my life.

I should have known it was too good to be true. I should have known it wouldn’t last. I should have known what was about to happen.

But I didn’t.

A couple of minutes after 9, I was pulled into a conference room for Simon’s meeting with his teacher / case worker. The RTSE (Resource Teacher for Special Education) was out sick so unable to attend, but the “Team Lead” made an appearance. There were no administrators in the room (which I was prepared and really hoping for as we were to discuss some serious safety concerns). Since I called for this conference, the teacher asked what was on my mind (like she didn’t know after the exchange of emails). And at that moment, “Warrior Mom”, which was called for in this situation , just decided to run away and hide, leaving this terrified and apologetic shell behind to conduct the conference. We never discussed ANYTHING that I thought of in the 20 minute drive to the school or any of my frustration these last 2 weeks … just her promise that he will NEVER get on the bus at the end of the day without my prior approval. Yes, that’s important, but not what this meeting was about. I wanted to know HOW she would address these issues, including potentially starting to put together a behavior plan as it appears to now be warranted, and she had mentioned some other concerns that she had noticed since her return from maternity leave 2 weeks ago (which were never discussed).  His IEP Meeting isn’t until the END OF MARCH!!!!! When I have ANY question about my son’s safety going to school, how am I supposed to be comfortable sending him to school every day for more than 2 MONTHS based on a promise that I truly don’t trust her to keep?  Or when I don’t feel I know what the problems are so that I can do my part to address them at home?

And of course, this meeting doesn’t end until 9:50, just as Rachel’s meeting is scheduled to start, leaving me NO TIME to recover and change my focus from one twin to the other.  The head of Simon’s program goes off to get the teacher to bring me to Rachel’s meeting so I can wait in the office and have just a minute to get myself re-focused, but I only get about 3 minutes versus the 20 that the schedule had been budgeted for.  And Rachel comes to get me (along with her teacher / case worker), so the fact that I’m on the verge of hysterics has to be immediately hidden away.  And the whole way back to the conference room, Rachel is telling me about her day so far.  Perhaps this is a good thing.  It helped me focus a bit.  And knowing she’s in the room means that I can actually see her face and address her direct concerns as she is voicing them.  But it also means that I have to censor what I want to say because there are things that I really do not want her to hear at this point, things that my daughter with lowering self-esteem will see as an indication that she canNOT do certain things that I do believe she can, but are currently a struggle.

The problem of walking into Rachel’s meeting is not what I normally experience walking into an IEP Meeting.  I’ve sat through many of these, not only Annual Reviews but meetings to address issues, preparation for re-evaluations, the actual re-evaluation meetings themselves, placement meetings, etc.  All IEP-parents are familiar with the numerous meetings that we have to attend to help ensure our children’s success in school.  These always make me nervous (I always read a “pin” that I’ve placed below before a meeting, just to remind myself what these meetings are really all about).  But today, I wasn’t nervous … I was TERRIFIED!!!!!


Every time I walked into an IEP Meeting, I knew that everyone in the room has my child’s best interest at heart.  Even if we didn’t necessarily agree on the best course of action, it makes the process so much easier.  When we don’t agree, we discuss and listen to one another and work collaboratively to find the best solution for my child. And this was always the case.  Until April 11, 2018, when someone decided that she wasn’t going to listen to what I had to say and decided to take over the meeting and tell me that my daughter would do well in a program because they could support her IEP and there was no other option.  She didn’t care.  She wasn’t even willing to consider the possibility that there were better options.  She just felt that the “Least Restrictive Environment” should rule the day and there was no need to discuss any further.  We know this is not the case and we had that placement changed to the specialized program in which she is currently enrolled, but this has jaded me.  Now I don’t trust that the people in the room really care. Now I don’t think that they have her best interests at heart but just want to do what is easy until they prove to me otherwise.  There were 7 people in that room this morning (including myself).  Of the remaining 6, I know and trust 2 of them.  The others, I really don’t know them well enough to know if they are worthy of this trust or if I need to work under the assumption that they just want to do what is “easy”.  And without the faith in her team, these meetings are pure torture for me as a parent.

What are they failing to tell me?  What is happening while I’m not there?  Who do I believe when I get conflicting bytes of information?  I know this is all an issue with Simon … is it true for Rachel as well?  And these thoughts are running through my head the entire meeting.  How do I know we are making the best decisions for her?  As her advocate, I cannot walk into the meeting feeling these kinds of doubts.  I cannot allow myself to be adversarial without cause.  So I hold back.  But then I fail to fight for her.  And in the end, she is the one who will suffer.  And I will be left with the guilt.

I think this is the legacy of the IEP He!! of last spring.  And it needs to go away …. and quickly.  Simon’s meeting is in just over 2 months, and he is currently the one with the more severe issues in school.  I cannot walk into his meeting so fearful, just as I was when I walked into his conference today.  And I need to watch what is happening with Rachel’s IEP implementation to make sure that I didn’t allow them to make decisions that are not in her best interests. I need to find my confidence again.  And I needed it to happen TODAY!  But since it didn’t, I need to find it before 3/26 when I go back into that room to advocate for Simon.

Today was just a complete C-F (Cluster Fu#&)!

Tied Up In Knots



Parenting is hard. Every parent knows this and accepts the truth of it. But what do you do when it gets to be too much? How do you balance the needs of each individual child? When do you step in and intervene? What do you do when you don’t know the answers? To anything?

Because this has been my life for a while now.

And it’s quite literally tearing me apart.

Next week, I am doing something that I SWORE I would never do (again).  I have discussions planned for both Rachel and Simon.  For Rachel, it’s her annual review IEP meeting.  This will be my first meeting (for either twin) since our fiasco at the end of the school year last year IEP He!! regarding Rachel’s placement (if you don’t remember [or haven’t been reading until after that], here’s the link so you have an idea of what I’m talking about).  But just before that, I have a “conference” scheduled to talk about an issue we’ve been having with Simon.  Having meetings (of any sort) for both of them on the same day is something that hasn’t happened since their initial IEP Meetings when they were still less than 3 years old.  And that has DEFINITELY been intentional.  But Rachel’s meeting was already scheduled and this is when the school staff was available to meet with me about Simon, and I can’t put this off for any longer than necessary.  So, my wishes (in terms of timing) are irrelevant.

The issues with Simon are severe enough that I question whether he is safe at school. He has been attempting to leave the building when he is not supposed to — has once made it all the way home (not quite as bad as it sounds … he went home on the school bus — he had convinced his teacher he was supposed to go home rather than attend his after school therapy program). He has attempted this twice since then (within a week), but been caught before being successful (they are specifically watching for this now). Additionally, I question whether his team are actually telling me what is ACTUALLY happening versus what they think I WANT to hear.

So, now I have an appointment for a conference with his case worker, the liaison, and HOPEFULLY an administrator to discuss what has been going on with him lately. I am not sure exactly what they are going to tell me. This won’t be a formal IEP meeting — that’s scheduled for a couple of months from now.  This is just going to be a discussion. I also contacted our former program coordinator to sit with her and go over some of these things since she knows him as both a program coordinator as well as his classroom teacher (she had him in 3rd grade before her promotion) and she said she would talk with me (still working out details for that).

I need to make sure that (1) steps are in place to keep him safe. Right now I have some severe doubts about this and I cannot allow that to continue; (2) we are effectively communicating as a team — that is also something that hasn’t been happening effectively for a while or we wouldn’t be where we are now; (3) we help ensure that he has a learning environment where he can be successful. This last point, although important, is not my main focus of this conference as the first two points are so important.

I know my kid. I know what he is capable of, both the good and the bad. I know how he has historically reacted to a long teacher absence, which is something that has happened once this year and will happen 2 more times (nearly all of his female teachers are pregnant this year). And I know the system from a parent’s perspective. But I also know that not everyone wants to do what is “best” but what is “easy”. I know what “Least Restrictive Environment” means and how some school teachers and administrators put 100% faith in that concept, whether it serves the best interests of the student or not. What I have not been able to do is to get to know the team as well as I did when we were in elementary school. I don’t have the same faith in the middle school staff as I did in elementary school for a plethora of reasons. And that does prejudice me quite a bit, I am sure.

I’m trying to make sure that I don’t play the “politics” game and be afraid to say what I’m thinking because I’m afraid of how they are going to react. I need to work with these people for over 2.5 more years with Simon and similar people in the same location for Rachel (and I know that word spreads among the school staff). I don’t want to be “that parent”, but I need to be at the same time. I need to make sure that they don’t railroad me into decisions that will cause trouble for everyone as we continue to move forward. But I also need to be sure that they know I’m willing to listen, especially when I don’t have the answers.

And, on paper, I have 20 minutes between the end of the conference and Rachel’s Annual Review.  I always walk into an IEP meeting with my travel coffee mug — this time Dad is telling me I need to bring in 2 (one for each meeting).  I have to figure out how to clear my head after the first encounter and prepare myself for the second so that each child can get the attention that he/she deserves.

Ahhhhh …. isn’t special needs parenting fun?!?!?!?!?!