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!”

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Why Can’t I Just “Get Over It”?

Earlier today, I went for a walk. And, as is often the case while I walk, I was going over everything happening in my life. And when I say “everything”, I mean EVERYTHING happening including the kids, my marriage, my extended family, finances … nothing is off limits. There’s very rarely anything organized about these thoughts …. they are pretty random and they tend to take me on some predetermined direction which sometimes leads to clarity and other times to greater confusion.

Today, my brain took me back to the spring, to my IEP nightmare period and the entire Autism waiver application / approval process. For a change, when thinking of these things my mind was on Simon rather than Rachel (thankfully … don’t think I could go through that again). At least that was what I thought when I realized that was where my brain determined I needed to be this morning. It started with his re-evaluation and continued from there. You see, because I was so focused on Rachel at the time, I don’t think I have taken the time to fully address these issues. Why I seem to feel that TODAY is a good day to start, I don’t know.

I mentioned before that re-evaluation meetings are hard. Emotionally hard. You have to listen to all the things that are wrong with your child without the benefit of discussing solutions like you would during a normal IEP meeting. There just isn’t time. We discuss the results from psychological testing, educational testing, speech and language measures, fine and gross motor skills, etc. Just as for a regular IEP meeting, I get the results of these tests before the meeting so I have the time to review the results so (for me, at least) I can be forewarned and prepared about what we are about to discuss, but that doesn’t make anything easier. I still have to listen to them tell me that my son has barely reached any developmental benchmarks and in most cases is GROSSLY behind where he should be if he were a typically-developing child.

For Simon, we know these things. And we have known these things for a long time. But there is something different seeing these things written in these reports or listening to them tell you about it in the setting of a meeting. I don’t really fully know what it is … if it just becomes more “real” or it becomes fact rather than suspicion. But something changes when you see them in black and white. The hopelessness starts to set in. The feeling that, despite everything that we’ve been doing for the last 9 years and have seen so much growth, the realization that he is not only failing to catch up, it he continues to fall further and further behind. And there have been so many things happening these last 7 months that it just seemed to hit me today.

Then we have the waiver application and approval and implementation. This time it was me reporting everything to the psychologist. And I was pulling information from the reports from his re-evaluation so I was able to provide up to date, complete and accurate information. And he was approved and has been receiving services since the middle of the summer. But these services are supposed to be outside of the academic world. We have written his goals so that he is getting academic help, especially in religious school, but no one seems to be addressing even his most basic issues in secular school, including his organization and insuring that he is completing and submitting his work (regardless of the accuracy of his results).

But the truth is, Simon is failing. Of his 7 classes during the first 10 weeks of school, he (literally) failed math and science and is struggling through everything else. This is partially my fault … I made the conscious decision to allow whatever was to happen, happen to start 6th grade. With everything that has changed, I wanted both he and Rachel to have the time to transition to their new routine and school. Unfortunately, this was the result for Simon and I do regret that fact. But I don’t regret the overall decision.

I recently came up with an idea to help him in secular school that his teachers seem to like, translating lessons to a road map visual since this appears to be how he best processes information. We are just currently working on designing ways of implementing this visual for all subjects.

But today, that hopelessness is back. That realization that I have failed in my primary responsibility as a parent (to raise my children to be independent and productive members of society) and that Simon will never really be “OK”. He was approved for the waiver for a reason. Because he is on the path of requiring full time care as an adult. And that’s MY FAULT. I know that things are far from over. I realize that things can continue to change and improve. And we are seeing tremendous growth even despite his academic failures. But we are SO FAR behind that I don’t know what the future holds. And that uncertainty has me questioning EVERY DECISION that I am asked to make. And it makes me feel like there is no point in putting in that necessary effort.

I still intend to do so … it’s FAR too important. But today, it feels like there is no point in it all.

“Surgiversary” Day!

A year ago today, I went to Shady Grove Adventist Hospital for Gastric Sleeve surgery.  I woke up that morning knowing that I had spent months preparing for it and I knew I was ready.  I watched Dad go through surgery 6 weeks before so I knew what was going to happen.  Yet, like anyone about to go “under the knife”, I was terrified.  I didn’t need to go to the hospital too early so I was able to say goodbye to the kids as they went off to school.  I was able to take a shower and relax for a short time before Dad and I left.  And, like I said, I knew I was ready.  All of my questions had been answered.  I had been working hard for 6 months in preparation.  All the pieces were in place and I was ready to go.

I still remember as I was waiting for them to bring me to the OR, I was determined to speak with my surgeon (I knew he was going to be coming by to talk to me before the procedure).  I remember that I needed to hear HIM tell me that I was going to wake in recovery a couple of hours later.  Having a husband and 3 kids counting on me, I just needed to hear HIM tell me that I was going to be fine.  I knew that for him it was simply a “Wednesday” and that this was something that he did multiple times twice a week (he typically only performs these surgeries [at least at the time] on Mondays and Wednesdays), but for me this was a first.  I had had surgery before.  I remembered how I felt when I woke, sometimes wishing that I hadn’t as the pain was so great.  But this was different.  This was “elective”.  This is something that I CHOSE to do.  Even though I knew it was necessary (I had tried everything else and was ready to take this step), there was still an “option” associated with it.

But as I was told, I did wake up in recovery a couple of hours after this conversation with the surgeon.  And I went through the recovery process.  And I was discharged to home the next day and continued my recovery there.  Life returned to normal, bit by bit.  But “normal” had changed.  This whole process has changed me.  It’s changed my husband.  It’s changed our family.  It’s changed our lives.

We no longer live such a sedentary lifestyle.  We are more active.  We walk from place to place.  Dad is getting ready to run a 5K this weekend, almost exactly 18 months after starting the weight loss process in preparation of his surgery (“500 Pounds to 5K in 18 Months” is the planned title of his story).  And we are taking the kids along with us.  When they were still in elementary school, the kids would walk to and from school as long as the weather was reasonable (middle school they are bused so that’s not really an option).   The options for food have changed and we are all attempting to expand our palettes (although I wish it were happening faster with Rachel and Simon).

I never would have imagined how much my life would change after making the decision to have bariatric surgery, even after people had warned me that it would.  I never noticed how truly depressed I was.  I never realized how I couldn’t stand the sight of myself in the mirror (still working on that one).  I never noticed how hard I would try to stay out of pictures, especially when the pictures were with my kids.  I was so embarrassed by the way I looked.  And I was ashamed that I couldn’t seem to do anything about it.  But instead of trying to fix it, I would eat another slice of pizza or cake.

Today I am a full year past that surgery date.  Since I started this whole process (about 6 months before surgery), I have lost 180 pounds.  I have lost 104 pounds since the surgery itself.  I have dropped from a size 26 being tight to between a size 10 and size 12, depending on the cut of the clothing.  My BMI still is high, but I’m no longer “Obese” (just “overweight”).  I go to the gym and work with a trainer once a week.  Yesterday I took a HIIT class and (although I’m TERRIBLY sore today), I know I DID it (even if I had to make several modifications to the exercises she was having us do).  And I know I will return after Thanksgiving (with only a half day of school that Wednesday, I doubt I will be able to make it to the gym that morning).

I’m still working on finding balance in my life.  The surgery may have helped me fix a lot of things, but I’m still me and I still need to work on my many issues that I speak of in my writings here.  But I know I’m on the right path!

My “What If…” World

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Many of our most frightening questions start with the two words “What If….”.  What if this happens?  What if someone gets hurt?  What if something doesn’t work?  What if things don’t get better?  The list is endless.  And these questions bleed into one another and can drive a person mad!

 

This is where I live.  Every part of my life, I am always asking myself “What if….” questions.  I ask them about my kids.  I ask it about my career choice(s).  I ask them about pretty much everything.  I’m not sure when this started.  I remember as a teenager being told by my parents that I shouldn’t think in “what ifs”.  And I think I had stopped for a while.  But I’m definitely neck-deep into the what-if world now, and as I am so comfortable here, I have probably been inhabitant for a very long time.

 

For people like me (OK….maybe not people LIKE me…just ME) living in the “What If World”, we find ourselves never just acting on something but asking ourselves a series of “what if” questions before taking on any action.  I almost feel like I have to map everything out before I can begin.  I think of where I want something to go and then what will happen when things go in a different direction (“What if option B happens instead of option A?”).  And then it continues to branch from there.  Often I can use this to my advantage … I’m (at least mentally) prepared for any outcome I can envision.  But I can spend HOURS almost practicing conversations that I need to go in a particular direction and then get frustrated when things go exactly the way I want them to because I wasted so much time.  Or something happens that I didn’t anticipate and I find myself back-pedaling to keep myself on track.

 

A particular example is an ongoing conversation I’m having with my parents.  They have (independently) decided to move and I have made (what I believe to be ABSOLUTE CORRECT) the decision that they need to be moving close to where I live (reasons aren’t important here).  This is NOT what they seem to want to do, however.  Yet, as I said, I know in my heart that this is what they MUST do.  So it falls to me to convince them (trying to get my brother on board to add to my voice of reason).  Before every conversation, I have been mapping out what I think I should say and how I believe they will respond.  And I prepare myself for every argument opposing my reasoning so I am prepared with a counter-argument.   And I know if I push too hard, I will never convince them of anything but if I allow things to just naturally take their course, they will make a different decision on their own which will be very difficult to correct.  But I’m completely unsure of where this line actually lies so I’m always at risk of crossing it with every word I utter.

 

But the “What Ifs” don’t apply only to this topic about my parents, but every decision that I make, whether it’s in reference to my parents, kids, husband, myself … anyone or anything.  Nothing in my life can be spontaneous.  Granted, that’s not necessarily a bad thing given what my life looks like.  Rachel and Simon don’t respond well to spontaneity and need to be well-prepared for any new experiences that come their way.  Even Big Brother has come to be unhappy with surprises.

 

In searching for an image to associate with this post, I saw one that said, “What if I fall?  Well my darling, what if you fly?”.  If my life is going to be filled with “What Ifs”, I need to fill it with more like these!

Heartbroken

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This past weekend, on Shabbat no less, yet another senseless act of violence occurred in our country.  This time, it was in Pittsburgh, Pennsylvania and this time it was the Jewish population that was targeted.  Someone walked into The Tree Of Life Synagogue (Shul) and announced that “All Jews Must Die”.  Then he opened fire.  By the time he was done and those who tried to help had done all they could, 11 people were dead.

 

I was living in Pittsburgh, PA from 1996 until 1999.  2 of those years, I lived 1.5-2 miles away from Tree of Life.  As this is a conservative shul and I am a reform jew, this was never my house of worship.  But I know several who did attend services there and are / were members.  This includes a family who invited me in during Passover when I was away from my own family for the 2 years I was living nearby.  Additionally, as a Jew (and proud of that piece of my identity), there is a very personal connection to me as the threat directly applies to me and my children.  When I say this, I am not trying to minimize the many other terror attacks and mass shootings that have been plaguing our country for the last several years.  I’m just saying that this is one that has a personal connection to me and my family.

 

Other facts about this attack you can read about or learn elsewhere.  That is not the point behind this post.

 

What I do want to talk about is Big Brother.  He was out of the house all day on Saturday doing an activity (he plays with the local high school marching band and they were at University of Maryland to play with their band during the halftime show and in the stands for “Band Day”).  I dropped him off at 7:30 in the morning and didn’t pick him up until nearly 9:00 in the evening.  As this happened in the morning and news of this broke right away, I knew it was possible that he had heard the news, but I wasn’t sure.  And he was going to be spending time in the synagogue the next morning for Sunday School and at a Youth Group event in the evening …. I wanted to be sure he heard about this before attending these and from me or Dad rather than from his friends.

 

He told me he had seen a report about something on YouTube about 15 minutes before he got back to the school.  But it didn’t show many of the details.  So, I filled him in as best  I could.  Initially, his reaction was almost one of curiosity, asking where I had lived relative to Tree of Life (as he knew I had lived in that area before Dad and I were married).  He asked if I had ever been in that shul and if I knew others who worshipped there.  And my answers were clearly things that caused him some concern.  But after asking these questions, he became silent.  Calm.  This was very disturbing to me as Big Brother tends to be very emotional and I expected anger and outrage or fear or sadness … anything but quiet.

 

I pressed him asking him what he was thinking.  And his answer was alarming.  He pointed out that this was “normal”.  Mass shootings are happening all over against various groups, yet we all just go on with our lives.  These acts of violence are happening in our schools.  They happen in places of worship.  They happen in movie theaters.  They happen when people attend concerts.  They happen everywhere.  And the story is always the same.  People get scared and angry.  And then they move on like nothing happened and things continue on … until it happens again and the cycle is renewed.

 

Big Brother is THIRTEEN YEARS OLD!!!!!  What have we become when a newly-aged teenager feels that shooting up a synagogue is “status quo”?  What does that say about us as a society?  What does that say about our ability to keep our loved ones safe and secure?

 

As ashamed as I am to admit it, this bothers me more than the act of violence itself.  Why can’t we do better?  And when will it change?

Bullying

Yes, my family has been exposed to bullying before. Big Brother had an incident in 3rd grade and we have been listening to Rachel talk about people bullying her for a while (like over a year). But something changed yesterday.

Rachel’s bus arrived in front of our home like usual. It was on time. But it was raining, so I stood in the doorway holding it open so she can rush in as I know she hates the rain. And I was watching her as she was preparing to get off the bus. And something looked “wrong”. I can’t put my finger on what I was seeing that gave me that impression. But I just KNEW it.

When Rachel got in the house, she was in a RAGE. I’ve seen this before, but again, something was different. She was talking about a classmate. The same classmate she has been complaining about since the 2nd day of school. And she was clearly VERY upset about this person.

I gave her some time. She had her snack (and a special one as we had brownie bites in the house). And then we went upstairs to get ready for dance. And she was still going on about this classmate. Now we’re crossing into “we’re in trouble” territory (her after-school rages typically last 1-3 minutes unless there is a REAL problem).

So we started playing “Big Problem / Little Problem”. We found something that was causing her trouble at school that was relatively minor. She still called it a “Big Problem”, but we were easily able to break it down to a bunch of smaller issues that are manageable and voila … “Little Problem”.

Then I mentioned this classmates name. DEFINITELY “Big Problem”. So we talked about it and try to break it down into “Little Problems”. No matter how I tried to break it down, we couldn’t get off of this classmate being a “Big Problem”. Then I suggested that I email her teacher and see if the 3 of us could sit down and talk this over.

Then everything changed. For the first time since she arrived home (over 30 minutes earlier at this point), she actually RELAXED! I could read her expression … she BELIEVES me!!!! Someone is going to help me FIX this!!!! Even though I suspected from the moment I saw her on the bus in such an agitated state, now I knew it …. this classmate is BULLYING Rachel!

Fast forward 24 hours and that conversation has now happened with that teacher. And the teacher tried to convince us that this isn’t actually “bullying”, but recognizes that there is a problem. I’m not sure I agree. I see how upset Rachel is whenever this classmate is mentioned. I see how powerless she feels when talking about this person and how she second guesses every part of the exchanges between them. She FEELS like she has been bullied …. and in the end that’s what matters.

I am not really sure how to proceed. The teacher is intervening and I need to give her a chance to change that environment. It was also established during this 3-way meeting that Rachel will not be working with this classmate as often in the future, giving both of them space from each other. I’m hoping that will help improve things and then I can just let this rest.

But there’s more to this in my head. This is EXACTLY what I have been dreading for so long …. that someone would bully my kid and make her feel small and less than who she is. Even if “bullying” was not what her classmate intended, it was the result. And now Rachel knows this feeling that no one should have to know. And with her plummeting self-esteem and feeling like she’s in a program for people who cannot function in a regular school setting making her feel badly about herself already weighing on her mind, what else will she have to face before we can turn things around. I know self-esteem issues are a problem for many middle school girls and I can’t change that reality. I just wish I would have been able to stop this before it escalated to this point because I did see it coming.

And I didn’t.

Time For A Fix

Ever since I starting blogging, every year on my birthday I try to take the time to write a self-reflective post.  It’s been a couple of years since I’ve done this but, the way things have been going lately, this year I think a post like this is more important than ever.

This last year has been full of, well let’s call it what it is … emotional turmoil.  In the last year, both Dad and I had our weight loss surgery (well, Dad was October 4, so TECHNICALLY it was outside the window); Big Brother had his Bar Mitzvah; Rachel and Simon graduated from elementary school and started middle school (and everything that process entailed); and Simon qualified for the Autism Waiver (whereas Rachel did not).  And these are just some of those emotionally charged events that have been dominating my life for the last 372 days.  Each of these had me coming unglued more than once (with some more so than others) and these and several other doubts and worries have been a persistent weight on my mind for FAR too long.

About a month ago, this seemingly never-ending feeling of being beaten down led to me sitting down and talking with someone.  I had reached the point where I was desperate for someone to listen and perhaps point me in the right direction so I could finally figure out what I was supposed to do.  I needed to finally come to terms with everything that has been happening this last year and find my way back to feeling positive about where we are and the direction that things are heading.  After letting me talk for a while, she asked me what I do for myself (rather than what I do to support my family).  And, when I couldn’t give a satisfactory answer, she assigned me the task of taking time each day while the kids were in school and Dad was at work to find something to do that was for my personal benefit, not for their’s.  She instructed me to spend time each day to take care of myself.

This has been (annoyingly frustrating) VERY difficult for me to do.  I notice that when the kids are in school, I am generally just waiting for them to come home.  I pass the time in various ways and I’m almost always busy, but there is no direction in anything I do.  But for this last month, I have been TRYING to find something that can give me that break and still have a purpose.  I haven’t managed to do what she had tasked of me, but I have been doing a lot of self reflection.  I have spent time trying NOT to think about my kids and focus on myself (insert guilt feelings galore).  I have been thinking about how my life has changed these last 11 years since I stopped working outside the home and became a Stay At Home Mom; and even more so since March 12, 2009 when the developmental pediatrician told me that Rachel and Simon were “clearly on the spectrum”.

I see how much my friendships have changed.  I see how I started avoiding most of my friends with kids (which was pretty much ALL of my friends) because seeing their typically-developing children do everything that we parents expect made me only see what I had feared was lost in two of my own children. Because of my inability to look past my jealousy and sense of loss, I allowed friendships to disappear. Some of these friendships were with the people who I had felt closest with and, in their defense, they always tried to help in any way they could.  But I couldn’t bring myself to accept that help whether for ego or other reasons, and I allowed them to quietly slip out of my life as they each gave up on me, one by one.

It’s not ALL bad … I also have forged some amazing friendships that have come about BECAUSE of my entry into the Autism parenting world — people who share in the daily struggles that define so much of my life, who understand my worries and fears and can share in my triumphs.  And these people helped me to realize that many of those things that I felt were unattainable were still possible … only the scope and timing had changed.

But the truth is there is no balance in my life.  Everything is about my kids and so much of it is about Autism.

How does one find balance when it’s been lost for so long?  I need to learn to let go of my worries before they infect my kids more than they already have.  And what about those friends who I have pushed out of my life?  I need to try and reconnect with them.  Perhaps those friendships would have ended anyway as we all change over time.  But what have I lost by keeping these people out of my life when I needed them most?  I deserve to know if these people can once again be part of my circle.  And, most importantly, I need to give myself permission to have a life.

One of the things I decided to do was to join my synagogue’s Board of Directors (and for the record, I decided this BEFORE starting this self-reflective cycle).  I knew that joining the Board would mean I would also join some of the committees offered within the community.  I had assumed that, as I am always so family-focused, I would be joining with groups such as the Religious School Committee or other groups targeting the families in the building.  But I am realizing that this is not where my focus should be.  The reason it was so important for me to join the Board was because this was something that I wanted to do.  Yes, my family can benefit from whatever role I choose to take in this, but this is something that needs to truly be about ME.  And, even though this violates what I just said, I think I know how I can make a contribution in a very personally fulfilling way (I’m still trying to figure out the scope and implementation, so please forgive my vagueness).

So, what am I going to do with these realizations? I came up with 2 primary self-improvement goals for the year:

  • I need to find something that is truly my own — something that does not have anything directly to do with my kids or with Autism.  Autism has become my obsession for the last 9 years, and I don’t think that will ever change — this as a subject has become a central part of my (and my family’s) life and something that I am always striving to understand so I can help my kids learn to be successful.  But I need something else to give me other places to put my energy and effort for a portion of every day.  Something outside of this obsession so I have positive energy to devote to my family’s needs without any resentment.  I don’t really know what that is yet, but I need to find that “something”.
  • I need to try to reconnect with some of my friends whom I have been mostly avoiding these last 9 years.  I need to see if those friendships can be resurrected because I truly miss these people in ways that I cannot satisfactorily express.

Who knows what will come of these thoughts and plans.  I just know that the way I have been feeling these last 6 months cannot be allowed to continue, and the time has come to make things better.

Happy Birthday To Me!

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Helicopter Mom-Dom

Yes.  I admit it.  I’m a “Helicopter Mom”.  It’s a title I embrace.  It’s also a title that embarrasses me.  But why?

 

Why is it seen as a bad thing to be concerned about your children?  Why is it seen as a bad thing to make sure that our children are safe and cared for, even when they aren’t in our presence?  Why is it seen as a bad thing when we special needs parents go out of our way to advocate for our kids?

 

Because that’s what being a “Helicopter Mom” means.

 

What brought this on?  This morning, Dad and I were talking.  Columbus Day is always a day that he is off from work and the kids are in school.  We often try to spend at least part of the day together, even if it’s just going out for lunch, since it’s a rare opportunity for some quality time for us to spend together without worrying about the kids.  It’s also typically the “Open House” day at the schools.  I rarely have gone to these so that Dad and I have that time together, but this year with Rachel and Simon in their new school, I was considering making an appearance.  When I mentioned this, Dad made the helicopter sound and moved his finger in a small circle (as in a propeller motion).  I know he was trying to get me to back off and let them have their space.

 

But I don’t think he understands this.  For Big Brother, I need to give him his space (and I’m not considering visiting him at school).  But for Rachel and Simon, the only way I can really get a sense of what’s going on is to be as hands-on as possible.  And that means being a “Helicopter Mom”.  I email teachers frequently.  I schedule IEP Meetings (as much as I HATE them) quarterly for Simon in an attempt to find ways to make him find more academic success.  Every time I back off, things fall apart and I miss the important things.

 

So, yes.  I’m a Helicopter Mom.  I advocate for ALL of my kids.  I do what I can to facilitate things for Rachel and Simon (in particular) because they are already fighting against their own instincts to make friends and fit in when it seems the world seems to want them to stay away.  And I am always available to assist Big Brother whenever he needs to know that his parent has got his back.

 

Helicopter Parents of the world …. UNITE!!!!!!!

 

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