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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Back To School (posting a little late)

Well, school started a little over a week ago (sorry for not writing this post earlier … been running around a lot this last week).  Any parent knows the goods and the bads that goes with the start of a new school year, and my life isn’t any different.  We look forward to the return of routine.  We (as parents) look forward to not needing to entertain our children every minute of the day as they constantly complain that they are “bored”.  Our kids look forward to their new adventures.  And we all fear these same exact things as much as we look forward to them.

 

This year, that seems to be even more the case.  Well, not for Big Brother.  He is starting 8th grade and gets to be the Big Dog within his school (quite literally as he has now topped 6 feet tall!).  However, Rachel and Simon were starting new school adventures, truly setting off into the unknown.  They were going to a new school.  They were taking the bus to school (something that they haven’t done for several years).  They were going into a new program without knowing anyone (not exactly true …. Rachel discovered during the “practice day” she knew one child from her Sunday School class).  Expectations were unknown.  Teachers were new.  The idea of having SEVEN classes in a single day was an unknown concept (they were used to 4 [including specials]).  Rachel would be going from a mainstreamed class environment to a special education specialized environment with more hands-on help than she is used to.  Simon was to begin his after-school program (Camp Connections) so his day would begin at 7:20am (when the bus picked him up) and end as late as 6:00pm (depending on when I made it to the school to pick him up).  But I sent them on the bus that morning, ready to experience the newness of the experience, anxiously anticipating what would be waiting when they each came home.

 

Much to my surprise, the end of the day arrived and Rachel jumps off the bus EXTREMELY happy!  She had a near-perfect day per her daily contract (based on behavior and meeting expectations).  And she was generally happy with this new situation.  Rachel was probably the one I was more concerned about with the start of the school year.  She does NOT typically transition well.  It tends to take her a long time to adjust to any new situation and this DEFINITELY qualifies as a new situation.  But there are rules to be learned, and like she learns choreography in dance so quickly, she embraces all rules.  And that’s what she chose to focus on.  She made sure she learned all the rules and adhered to them as best she could.  She didn’t get into any trouble (again, something that she has difficulty tolerating) and was rewarded for having a good day (which turned into a good week).

 

Simon was also extremely happy when I picked him up from Camp Connections later that afternoon.  He had already experienced Camp Connections for 2 weeks at the end of their summer program, so he knew the staff and the general expectations.  He was honestly looking forward to going back to “camp” far more than he was excited about going to school (and that has continued over the last week and a half).  I went through the notes from his first day and he did quite well!  But he was worried about one thing … some of the staff (as well as Dad) informed him that there WOULD BE a fire drill the next day (2nd day of school).  I’ve spoken before on this blog about Simon and the fire drills, so I don’t need to go into the details again of how much he HATES them!  And once again, I tried to warn the staff about this but they just brushed it off, claiming that they’ve seen it before and they can handle it — no problem!   As I’ve heard this before, I had my doubts, but as he is older and has been tolerating fire drills better over the last year, I had no choice but to sit back and let things happen.

 

First, he exclaimed that he was NOT going to school the second day.  When we made it clear that he was, he informed us that he wasn’t going to get off the bus.  Now I KNOW we’re in trouble, and I sent his case worker / homeroom teacher a warning of his threat.  I spent the whole day checking my email to see how things happened, and around 2:30 I receive an email from the school (time stamp was much earlier in the day … not sure why it never came through until later) informing me that he DID come into the building with minimal opposition, but he also left the building prior to the fire drill without permission or support.  So, now his new school believes me when I tell them he HATES fire drills (I swear, NO ONE believes me until they actually witness it for themselves).

 

So, it wasn’t a perfect first week of school, but it was OK.  There have been a few more incidents that have had me emailing teachers back and forth, but overall I would consider it a successful first week of school!

 

Conquering the Fear

A couple of weeks ago, I took the kids and Big Brother’s friend to an amusement park (King’s Dominion) about 2 hours away from my home.  It’s not really a travel destination like Busch Gardens or (definitely not) Disney, but it’s more than your local hum-drum amusement park … I would say even more than a 6 Flags location.  It’s a pretty big deal and a place where everyone always seems to want to go.

 

I did this because I had made a promise to Big Brother.  We had found a camp that traveled to local amusement parks and I was going to sign him up.  But, I kept forgetting. And there was only one week that would (1) work with our schedule and (2) that he wanted to attend.  By the time I got around to signing him up, that week was full and I was out of luck.  But this was MY fault.  I had told him I would take care of it (I knew there was space at the time [and plenty of it]) so this was my way of making it up to him. And so he wouldn’t be stuck with his brother and sister the whole time, I told him he could invite a friend to hang out with while we were there.  So, we agreed on a date, he found someone who wanted to go and off we went.

 

We didn’t want to deal with crowds.  So I knew that this trip had to happen during the week.  After thinking about it, we decided on a Tuesday because it would likely be as NOT busy as possible.  And I think we chose well on that score.  But because we were going during the week, it was just me taking these 4 kids and not Dad.  The older boys would be hanging out together and they had their phones, so we would be able to keep in touch.  I wasn’t worried about them.  It was Rachel and Simon that were the concern.  Simon LOVES roller coasters.  Rachel HATES them!  (they can never do the same thing)  Rachel also hates anything with heights.  In fact, she generally hates any ride you would find in an amusement park.  Simon doesn’t want to spend time at Meet – N – Greets.  And things like Face Painting?  He has NO PATIENCE for it (whereas Rachel is searching for both of those things from the moment you arrive at something like this).

 

Then there was the food concerns.  My kids are RIDICULOUSLY picky eaters.  Things have to be EXACTLY the way they are familiar with.  And unlike most kids, they HATE pizza (hey, at least they agree on SOMETHING, right?)!  And I am still having to be careful about what _I_ eat following my bariatric surgery (at least in terms of quantity).  We ended up waiting on a painfully LOOOOOONG line at Chick-Fil-A (NOT my favorite place under any circumstances) and paying a fortune for food they wouldn’t eat because it wasn’t what they were used to.

 

But still, we made it all work!  We were eventually able to get Rachel on TWO (2) roller coasters (one was the kiddie coaster)!  Simon went over to meet Snoopy!  We spent time at the water park that is part of the overall facility and we all (yes, me too!) went on several water slides and a lazy river!  And the older boys did their things, on their own, just the way they wanted to!

 

Sometimes, you just have to face your fears and JUST DO IT!!!!!!

 

The Power of Coffee

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Has anyone else ever noticed that sometimes something as simple as a cup of coffee can help determine whether a day will be good or bad?  That is something I have been discovering this summer.

 

A couple of years ago (also during the summer), the “Coffee Monster” was born.  Funnily enough, she was born in a grocery store (Harris Teeter, to be precise) when a grocery shopping trip of a Mom with her pair of Autistic Twins went horribly wrong.  Before leaving the store, this Mom decided she needed to pick up a cup of coffee to console herself and said twins’ behavior on the Starbucks line gave birth to the Monster.  Ever since then, both of the twins have learned that when their mother is holding a cup of coffee, there can be no interruptions, no complaining at her, no tattling … otherwise the Coffee Monster comes out.  Sometimes they need a brief reminder (in the form of, “What is Mom doing right now?” [drinking coffee] and then said child backs away … slowly).

 

I live very near (about 0.5 mile) from a Starbucks.  This spring, after I started walking daily, I decided I wasn’t allowed to visit Starbucks (with the exception of a planned meeting and weather made this impossible) unless I walked over there.  I could combine it with another walk or it could be a straight shot … either is acceptable.  The intent was I would stop going there so frequently because it would just be too much of a hassle.  But the truth is that it has become my daily walk.  And that has been especially true since school has let out.  I leave the twins home with Big Brother and I go out for an hour or so.  Long enough to walk there and back (and maybe stop at the grocery store on the way home [in the same shopping center]) and enjoy a cold brew.

 

I’m discovering this truth about coffee determining the “goodness” of my day right about now because I am having a hard time finding my opportunities to take this walk.  Big Brother has been invited to join the high school marching band which is rehearses from 9-4 this week.  Yesterday (Monday), I took my walk AFTER bringing Big Brother home, but that meant no Starbucks cold brew until much later in the day.  Today, the weather looked REALLY bad so I broke my rule and picked up my coffee on my way home from dropping him off at Band Camp.  The difference in the quality of the day, despite the horrible weather outside today versus yesterday, is almost palpable.

 

So, I guess I need to accept that, for this week at least, there will be a coffee stop on my drive home from taking Big Brother to band camp.  Otherwise, the Coffee Monster may decide to move in and take over my body permanently!

 

 

Phrase I need a coffee with sleepy green monster

“OK” Versus “Not OK”

These last 4 months (or so), I have been struggling with my parenting role.  Timewise, it coincided with my barrage of IEP – related “stuff”, and perhaps that’s what kind of starting the ball rolling, but I truly don’t believe that’s fully (or even mostly) the cause.  It’s realizing some truths (even though I’m still not sure I’m ready to embrace them).  It’s perhaps coming to accept realities which I have been denying to myself for a very long time.  It has led to me coming back to this blog and writing out my thoughts and trying to come to terms with them all.

 

This weekend, a video came across my Facebook feed (yes, I’m addicted to Facebook).    It was a confession of sorts made by the writer of Finding Cooper’s Voice.  I watched it (watching what she was saying on closed captioning because I wasn’t alone and didn’t want anyone else to know what I was listening to) and immediately knew that this was something that was speaking directly to me.  You see, I know she was talking about her son (Cooper), but she might as well have been talking about Simon (other than the fact that Simon is verbal whereas Cooper is not).  And she was speaking about some of the lasts that all parents experience (last time nursing, holding hands, etc.).  And she brought up one that only Special Needs parents are likely to understand …. the last time you think that everything is or will be “OK”.

 

You see, I think that’s been my problem (at least in terms of Simon [Rachel is another story]) these last few months.  I’m starting to realize that things are NOT going to be OK.  I’ve always been able to convince myself that Simon’s (Rachel’s too) happiness is what I need to be most concerned about and who cares about how others see them, but the truth is, that’s NOT enough.  We’ve known for YEARS that Simon’s care will fall to Dad and me well into his adulthood, and will likely eventually fall to (probably) Big Brother.  Rachel we have more questions about whether she will require that level of support, but as she’s getting older, I’m seeing evidence that she likely will (which will be another burden we will be putting on Big Brother).

 

I have a friend whose child on the spectrum is older than mine.  I shared this video onto my own page and she commented on the link.  She said (very much paraphrased with my own interpretation of her words put in there) that this video implies something that isn’t QUITE true.  It’s not that things are not OK … they are.  But they are hard.  They are not what you plan for or expect when you learn you are expecting a child or even after learning your young child is Autistic.  And that realization is INCREDIBLY hard to swallow as a parent … we all have dreams for what our kids will become and to realize that those dreams are unattainable (not just unwanted on their part) can be earth shattering.  But it’s important to realize that things are never “over”.

 

That’s kind of where I am right now.  I am CLINGING (for dear life) to the hope that things aren’t “over”.  But I need to force myself to start embracing the reality that things are NOT going to be “OK” as I had always pictured them to be.  The time has come for me to redefine my new version of the word.  Once I do that, I will truly be able to say that everything is “OK”.

 

Some things are easier said than done.

 

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An Interesting Conversation

If you were an Autism parent, how would you teach your child how to behave when confronted by a police officer if you weren’t around?  That was a question I asked a police officer this morning who was enjoying coffee with the community at our local Starbucks.  I go for walks every morning (or nearly every morning) and my final stop is usually that Starbucks where I have a cup of iced coffee and then walk home.  But today, there was a community outreach effort being put forth by our local police force to meet with the community and answer questions and allow kids to associate with the officers.  I had forgotten this was happening when I set out this morning, so it was just me (no kids) … but I did take the time to ask my question.

 

You see, you have to be blind not to see the horror stories that come up on social media about police brutality.  And I TRULY believe that not all members of the police force take that action — in fact I believe it to be very few.  But I can’t deny it’s existence.  And like all professions, public perception is often based on the worst in the category.  Police officers walk around with guns and billy clubs on their person.  I know the potential for a catastrophic outcome is always possible (even if not likely).  And I know my son and how he reacts when his anxiety kicks in.  He demonstrates Autistic behaviors (mainly flapping and other forms of stimming which, if recognized, would clue in the officer that they are dealing with an Autistic individual), but he will do whatever he feels is necessary to get him OUT of the situation (fight or flight adrenaline response).  I want all of the horror stories that come across social media newsfeeds to stop, but I especially don’t want that one incident that people hear about to involve my child.

 

The officer and I discussed a few things, including what types of things set off my boy.  And how he reacts.  I explained this is the one time where he demonstrates ANY form of violent behavior.  And it’s not with the intent of being “violent” … it’s simply (as I mentioned earlier) what he feels is necessary to get him out of the situation.  We have historically seen this during fire drills at school or when he is confronted with an elevator (although both are much improved).  But even now, his teachers always have to remind him during fire drills that that’s PRECISELY what it is and that he knows what to do, at which time he stops that reaction and can follow the steps demonstrating that he knows what to do.  And I explained that these behaviors truly do seem be out of his direct control, especially if they escalate beyond a certain point.

 

The officer didn’t have any specific advice for me.  But he did suggest that I contact another member of the police force (which he will facilitate for me since he didn’t have her contact information available at that moment).  She is a special needs “expert” of sorts on the force; someone who consistently works with individuals with special needs (often Autism) to help facilitate interactions between the individual and the police force.  So that is our next step.

 

With everything changing in Simon’s life this year, I want to do as much as possible to prepare him for whatever may happen.  This is, hopefully, never going to be something that we need to worry or concern ourselves about, but the truth is one never knows when an emergency will happen or when (or if) he will need assistance from someone other than a family member.  It’s important for him to know how to interact safely with authorities without panicking and be able to express himself effectively.

 

Add this to the list of lessons we are trying to teach Simon this year!

 

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Back to Waiver “Stuff”

I wrote a post couple of weeks ago about how Simon was approved for the Autism Waiver.  Since then, we have been starting to put things into place.  And yesterday, I notified our case worker about which providers we will be using.

 

The original suggestion was to stick with the after-school program and work our way into the system more slowly.  Since we are eligible for services in multiple areas, we can incorporate them one by one.  But after thinking about it for a short time, I realized that we would likely be better doing everything at once.  It will mean overloading him, yes, but he’ll be overloaded ONCE rather than 3-4 times with each new introduction.  So we’ll have a few nightmare weeks and then hopefully it will be DONE.  If we were to introduce things slowly, the misery would just feel like it was never-ending.

 

So, we will be working with an after-school program located in the same facility where Simon will be going to school (coincidence, but can’t beat the convenience).  They offer several classes including drum lessons, martial arts, dance (I think they work with Zam Dance), organization … all things that he either needs or we were thinking about doing for him.  It’s our thought that he will do this 4 days / week (with the 5th day being religious education in the evening).

 

We did decide to take advantage of the IISS services (still don’t know the acronym) to help him in religious school (mainly).  After speaking with the provider, they can accompany him to religious school and help him during the classes.  We’ve been using older students (age 13 and above) to help him to date, but having someone with more experience and more knowledge of how to help him can only benefit him, right?

 

But taking advantage of IISS services can also be used to help Rachel indirectly.  They have a category of “Family Integration”.  We can create goals under this category to teach them to work together and help each other.  Then we can further work with Rachel to extend beyond her brother and hopefully help her in the community at large.  Hopefully this will also help her social interactions across the board, something that has been causing her great distress for the last year or so.

 

I still have no idea what I’m doing.  As usual, I’m flying on a wing and a prayer, hoping the decisions I make / made will do good and not harm.  We never know until we get there though.  Here’s hoping that this’ll do some good!

 

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Personal Transformation

My last several posts have been about the kids.  And that’s all good!  I mean, they are the reason I started blogging in the first place.  But several of these posts have been about my dread or concerns.  So, I decided that the time has come to write a post about ME (and Dad)!

 

In May, 2017, Dad and I went to see a surgeon who specializes in weight loss surgery.  We had both been (separately) to information sessions where he presented the types of surgery he performs and what is involved and we both decided we were ready to take the next step and learn what was involved in having weight loss surgery as we were both SEVERELY overweight and seeing health consequences associated with obesity.  At this point, we were mainly information-seeking, but the truth is that, since we were seeing the surgeon, it was probably more committed than just that.

 

Well, as you would probably have surmised by what I just said, we both decided (independently) that this is something that we needed to do.  We started putting the pieces together to make the surgery happen.  We met with psychologists.  We saw a nutritionist and an exercise specialist.  We had sleep studies done.  We went to a cardiologist and a gastroenterologist to determine if there was any reason why we should NOT have the surgery.  We went to support groups.  And we went to fight with the insurance company (who decided it was an “exclusion” on Dad’s policy).  In the end, Dad had gastric sleeve surgery performed on October 4, 2017 and I followed 6 weeks later on November 15, 2017.

 

Fast forward about 9 months (for Dad) and 8 months (for me).  He has lost about 220 pounds, I have lost nearly 170 pounds.  And both of us feel GREAT!!!!!!  We have more energy than we ever remember having!  And if we have a day where we don’t exercise, we feel MISERABLE!  For me, the majority of the exercise is walking (even if it means pacing the house for hours at a time when I can’t leave) and Dad goes to a gym Monday through Friday that is available in his office building (and he walks on weekends).

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Our lives have completely changed.  It’s such a nice feeling to walk into a store and be know I can find clothes that FIT!!!!!  And Dad has been able to fill in his wardrobe from Walmart or Target rather than having to shop at Big and Tall shops which cost 3 times as much for far poorer quality garments!  Neither of us are buying any clothing that we expect to last — our sizes are still dropping fairly rapidly and our clothes only last for so long before they find their way into a donation pile.

 

Just a couple months ago, Dad arrived at a school picnic where I was helping by grilling hamburgers.  He saw someone standing there but he didn’t recognize that it was me!  And we have been married for just about 20 years!

 

I know a lot of this is about my vanity.  But for the first time in, well, as long as I can remember, I’m not repulsed when I look at myself in a mirror.  I’m no longer shying away from having my picture taken (although I’m still a terrible shot).  There are many times where I truly don’t recognize my own reflection.

 

This process isn’t really about losing weight (although that is, in many respects, the end result).  It’s truly a journey in understanding how to live your life and how we each control our own health in many respects.  I don’t think I fully understood that 14 months ago when I had my first visit with Dr. Greene (even though I was told this by several people who had been through this surgery), and even if I did “understand” this, I certainly didn’t believe it.

 

I still have about 45 pounds to go to hit my target, and Dad would like to lose about 30 more as well.  But even if we don’t lose another ounce, this would be considered successful (as long as we can maintain the habits and weight).  I can honestly say that we are no longer quite the same people we were when we started.