Blog's been nominated!

This blog has been nominated for Babble.com's Top 30 Autism Blogs for Parents 2012.  If you have enjoyed reading the posts, please consider clicking on the link at the top right of the page at voting for us! 

Thanks for the nomination and the votes!  Hoping to have a chance to post a new adventure very soon!

Let me guess...there's a new moon on the horizon?

Yes, yes there is...April 21st is the next New Moon.  I knew there had to be one soon because I remembered the full moon was a couple of Saturdays back, but mostly because we went through a meltdown tonight and it's the first in quite a while.

I suppose I have been enjoying the "peace" a little too much, not paying attention to possible triggers.  I wasn't paying attention to the fact that there was a New Moon coming soon, and therefore Eli's emotions will be running a little high.  I didn't think ahead that the minor change in his after school pick-up schedule today may have upset the routine just enough to have a backlash later on.  I'm aware he's been having a rough time in class this week, being a little more disruptive than he's been recently, because he's excited for his birthday celebration with a friend  on Friday. (we're having to celebrate a week early since his birthday weekend is filled with our choir production at church)  He even was being problematic enough today that he had to move to the back of the room until he could get it together.  He's giving his magnificent teacher a real run for the money this week.  So, yes....the signs have all been there that we were heading for this.  I just was basking in the glow of how well everything has been going, and I wasn't paying attention.

Sometimes Eli is so literal that he has a hard time shifting gears to a sudden new direction, even if it benefits him.  He'd been given a direction to complete a task when we arrived home before he was allowed to play video games.  He had to spend 10 minutes playing with Sami, because she'd been in her crate several times today while Ben was out of the house, and we had choir practice tonight, so she would have to be crated again.  Ben had told E he needed to spend 10 solid minutes playing with her before he played his game.

Eli was going to take her out and then play with her.  When his brother decided to help him out in order for Eli to be able to play video games sooner, Eli completely lost it.  Ash had taken Sami out and was running around in the yard with her,  Meanwhile, Eli was trying to get the dog to come back in so he could play with her for ten minutes. In Eli's mind, Ash was keeping him from doing what he'd been told to do, and therefore it was going to take even longer for him to get to play his video games.

The frustration reared up and took over.  He threw the dog's collar in his fit of anger and screamed, "This is not fair!"  He burst into tears and would not be consoled.  He ran into our bathroom and locked the door, which has been his safe haven and meltdown habit for some time now.  He runs there to isolate himself and calm down when the emotions overwhelm him.  It's the farthest room in the house from any other place.  

Ash had tried to explain to Eli that he was trying to help him out, but it was too hard for Eli to understand the situation had shifted and that he was being done a favor.  In his mind he had to complete the task he'd been given in order to get to his main priority - playing his video game.  After all, that is his main goal at the end of each school day ... get home and play.  He could not see the favor that was being done for him.  All he could see was that he was being prevented from playing with the dog, and therefore it was keeping him from playing video games.

I left him alone for about 5 minutes to give him a chance to chill, and then I went into the bathroom.  There he sat, on top of the basket of clean towels, arms crossed protectively across his tummy and chest, shoulders tense and curled in, and wearing his "very unhappy" face.  I sat on the toilet lid and had him come to me.  I held him on my lap and explained to him that Ash was helping him out by playing with the dog instead so that Eli could go ahead and play his game. There was no reason to be upset. He listened, and I was impressed he'd already calmed down considerably.  Another kudos to the newest medication!

When he realized that he could go play now, he seemed to relax.  I asked him if he was okay, he said yeah.  I said, "E, you let your anger take over, buddy.  You let your emotions overwhelm you and that hasn't happened in a long time.  Do you realize...you let the anger get the best of you?"  It wasn't a scolding.  I just wanted to point it out to him so he would recognize what happened and hopefully be mindful of his emotions the next few days while we wait out this phase of the lunar cycle.  He nodded.  He knew he'd lost it.  But I told him how impressed I was that he had recovered so quickly!  He'd done a really good job.

Ash was in the house by that time and apologized to Eli, explaining that he wasn't meaning to upset him, he was trying to help him out.  They "made up" and then Eli initiated looking for the collar himself, remembering that he'd thrown in. (Another thing I was impressed with - that he remembered, and that he was mature enough to try to correct his mistake)

We still haven't found the collar.  It must be in, under or behind something because three of us looked for a solid 10 minutes and the collar still hasn't turned up.  It's "somewhere" out in the sunroom.  Maybe next Christmas we'll discover it when we're pulling out Christmas decorations.  Thankfully we had a spare!

Excerpts from the past

The other afternoon had been a little slow, so I began to go through some old files to clean up and clear out.  I happened upon several documents that told some old Eli stories I'd forgotten about entirely.  They brought a smile to my face and laughter to my heart.  I thought I would share them here.

A recap of a story I'd written down - so I wouldn't forget it - from July 2006 (Eli would have been 4 years old at the time)

July 13, 2006

My dad has a large but light red birthmark in the middle of his forehead.  You don’t really notice it much, unless he’s ticked off….at which point it serves as visual notification that you need to turn and walk away.  My sister ended up with this birthmark right in the center of her forehead as well.  I never notice hers and haven’t really seen it since she was a baby.  I remember that hers resembled a check-mark and we joked that God had checked her off as a “good egg” on the baby assembly line before sending her on down to us!

For my parent’s 43^rd Wedding Anniversary, my dad took us all to Red Lobster in Parkersburg (technically Vienna) WVa tonight.  Ben, Ash, Elijah and I arrived slightly ahead of Mom, Dad, Rachel and her (former boyfriend - name withheld), and we were waiting in the entryway for the staff to arrange a table-for-eight.  Eli (four years old) was running in circles, excited to be at “Wed Lobstah” once again!  There were no other restaurant patrons at that moment so I figured he could burn off a few moments-worth of energy before we were seated.  He wasn’t really running actually…more like dramatically walking around really fast, hunched over slightly, with his elbows swinging out to the sides in a pronounced fashion as he roamed around and around the small entryway area exploring his environment.  Had other patrons arrived, I’d have reined him in quickly.

As the rest of our group arrived, we all began our greetings and Eli swung past on this trip around the area, saw dad, and said, “Hi Gwampah!  I like your duck!” and then continued on his way.

We all stopped and silently stared at dad as he looked himself over, searching for a “duck”.  Finding no ducks on clothing, etc., we all just chuckled, shrugged and continued on with our evening. 

On the way home, however, I asked Eli what he was referring to as Grandpa’s Duck.  He looked at me for a moment, and I thought he wasn’t going to answer.  Then he pointed at his forehead and I suddenly realized that he must’ve seen my dad’s birthmark for the first time.  Why he thought it reminded him of a duck, I’ll never know, but we all had a great laugh about it, and when we got home I called to fill my folks in on where Dad’s “duck” was located.

From a Family letter sent in March 2008 (Eli would have been 5 years old a the time, about 6 weeks shy of his 6th birthday).  

Eli is planning to try his hand….or perhaps I should say feet…at soccer this spring.   He’s played some at school and seems to enjoy it.  He’s doing better at being capable of following directions and behaving, so this is a good time to try something new.  He too will be having a room makeover in the summertime.  His room is still in the theme of the original nursery that was made when I was pregnant with Ash.  Eli will be turning six at the end of April and has far outgrown fuzzy little barnyard animals, don’tcha think?!  J  It’s part of his birthday but he understands he’ll have to wait until summer for it to be done.

Pictures of how we re-did his room, and it's still decked out in Star Wars to this day, (only not as neat!) with framed old movie theater posters from the original showings!  And I managed to order a bedspread that totally matched one of the posters and didn't even realize it until everything arrived! 

 From a letter to my grandmother, November 2008 (Eli would have been 6 years old at the time)

Eli is now taking **** and seems to be doing fairly well on it.  He’s doing a little better at school, not giving his teacher as hard a time.  His anxiety seems a little better.  It will take time for it to build up in his system enough to level out and stabilize him, but we are already seeing improvements.  So that’s good! 

At his counseling appointment last night, his counselor learned a valuable lesson.  Ha ha!  J  She told him that she was going to be coming into his classroom soon to observe, and then she made her mistake…she tacked on, “Is that okay?” at the end.  Eli promptly told her NO.  I was sitting there cringing as soon as “Is that okay?” started out of her mouth.  I wanted to scream, “NO!  DON’T ASK THAT!”  Ha ha ha!  I told her later, it’s probably not a good idea to ever ask him permission.  I had to cut in and tell Eli that really he didn’t have a say in this, that Meg WOULD be coming in to observe in his classroom, but she would not embarrass him, she wouldn’t even talk to him, and no one would know that she was there for him.  She would just come in like any other college student who would be doing field experience, or like a student teacher, but she’d just be sitting there.  Eli wouldn’t have to talk to her or anything.  He still wasn’t happy about it, because it will cause him major anxiety the day she shows up.  Eeek! 

These are just a few stories that are fond memories because they either made me laugh out loud, or possibly snicker behind my hand.  Even during the "rougher" days when E was really struggling, even then he never failed to bring me such joy. 

How did we get here from there?

Eli and his cousin, Austin.  These boys are two peas in a pod!

I was observing Eli the other night, and I started thinking about how far he's come.  I've had so many people respond either via Facebook, emails, or in person, to say how much they enjoy the Blog and how they had no idea Eli was dealing with such struggles! 

I think that in itself speaks of how far he's come.

I'm grateful and blessed that he blends in with almost everyone else these days.  But I think it's important to remember from where we've come, and never forget.

I was so ignorant back then, when Eli was a toddler.  I had no idea that his lack of wanting to be held, his difficulty playing with other children at the sitters and in pre-school and at church, his poor behavior, his inability to sit still, and his lack of awareness of other people were all indication of a serious problem. 

I think of the severe behavior he constantly presented, and our neverending frustration with him.  Why won't he behave?!  I think of the times we ended up smacking his behind because it was the only thing that would give him pause and get him to calm down briefly.  Oh, the guilt I feel about that now!  It ripped my heart out at the time, and it hurts even today that we spanked the little guy, and he couldn't even help what he was doing.  We just didn't know!  

I spoke to Eli about that the other night.  I asked him if he remembered when he used to get spanked.  He said he did, and I told him how it hurts my heart to think that, out of sheer ignorance, we did that.  I explained we thought he was just being defiant and after we tried everything else, and those things didn't work, we would spank him, hoping THIS time it would get through to him that we meant it!  We were serious!  He could not behave that way, and he was going to learn how to be a good boy!  UGH!  I told Eli, with a lump in my throat and tears in my eyes, how sorry I was, because for a long time I just didn't know he couldn't help it.

You know what that sweet, precious child said to me?  "It's okay, Mom...don't cry...I'm not mad at all."

I don't deserve that boy. 

It's a miracle he's not mad...I remember the angry child he once was.  I remember the toddler who screamed and threw enormous fits over the slightest thing.  Most of the time it didn't even make sense what he was upset about!  How many times I had to pick up the writhing, hysterical child and remove him from a location not suitable for a tantrum, risking injury to myself, not to mention sheer embarrassment as all eyes turned to stare, to wonder, to judge.  What am I doing wrong?  Ash never acted like this?  I'm not doing anything differently?  Ash is so good...why won't Eli stop acting like this?   The questions never stopped rolling around in my head, mixed with blame, confusion, frustration, fear and sorrow you can only imagine if you've lived it.  What had happened?  Why was I failing as a mother?

I remember the Pre-school and Kindergarten teachers talking about Eli not playing with the other children, mostly keeping to himself and how he was happiest if left to his own devices, left alone completely in fact...he didn't always want to participate in what the class was doing, and of course that would be problematic in many ways. 

Family photo under the tree in Kim's Grammy's front yard.
The boys were so young!  So were we!

I remember conferences with the Kindergarten teacher, (who'd taught Ash as well, and she was wonderful) and how frustrated and concerned she seemed, telling me, "Kim, I can't even get him to look at me...it's been months, and I can't make a connection with him at all."

I knew what she meant. 

When Eli did start trying to make friends with children his own age, he'd be all over them.  He didn't comprehend physical boundaries. He'd be wrapped around them, which would freak the other child out. He was also prone to hitting or other aggressive acts that weren't always fueled by anger.  Sometimes I think it was just his way of attempting to connect to his playmate and he didn't understand it was inappropriate behavior. Often the other child would change his or her mind about wanting to be friends after all.

All the years of the poor teachers trying to keep him in his seat, and quiet, and on task.  All the years of daily notes home or emails, telling me the horrors of the day.  Don't get me wrong...I wanted to know!  I wanted to back up the teachers and present him with consequences at home as well, so he would know we were all aware of his behavior and he wasn't getting away with anything. I still appreciate a teacher who will communicate with me. But all those years of "red light" days (form of consequence system - you start your day off on the green light, if you have trouble you move it to yellow, which is supposed to make you pause and get yourself under control, and if you don't -- or can't -- you end up moving to a red light, which means you're in big trouble then, Buster!) Eli had red light days EVERY day.  Every single day.  

Seriously no wonder the child deals with severe anxiety!!!  Every day he was incapable of keeping his act together, every day he was in trouble, every day we both had to go through the stress and the shame of disrupting the class, and dealing with consequences.  Who wouldn't suffer from severe anxiety after years and years of this?!?!  My heart aches even now -- probably moreso because it's no longer sharing frustration, disappointment or even anger with the hurt.  All those harsh emotions have faded away, but the heartache of all my little guy went through remains. Why wasn't I smarter to know something was terribly, terribly wrong??  We just thought we had a very difficult child on our hands.  We thought he was just being stubborn.  I sit here writing this with my heart reliving all those emotions...the pain...the hollow feeling inside, the helplessness...the lost feeling....the exhaustion.

Didn't someone know?  Hadn't anyone come into contact with this before and recognized the signs?  Would we have even believed them if they'd told us?  I'm not trying to cast blame...there's no one to blame!  Not even me....although I still feel the guilt.  These are not things one just knows automatically.  But WHY didn't ANYONE know?!

But now that I do know, I want to reach out to YOU and You and YOU and him and her and YOU over there....and want to shout to all the world and say, "IS THIS SOMETHING YOU'RE SEEING IN YOUR CHILD?!  Are you dealing with this too?!  It may be completely different what your child is doing...remember, autism effects every person differently!  Is someone suggesting to you to get your child evaluated?  Did it make you mad?  Because you should listen...even if it's to rule something OUT!!!!"

I wonder now if I would have listened if someone had suggested to me that Eli might've been on the spectrum.  I can see me being offended back then.  I can see myself thinking, "Pffft, really?!  Sure Eli has some behavioral problems, but surely he's not on the Autism Spectrum!  Ha!  How dare they even suggest that!"  I can see me taking that stance.  Maybe.  I'm not sure.  It's hard to say now how I would have reacted then, because maybe, just maybe I would have been grateful.  Grateful to have a possible answer!  A reason!  A Direction to head, a LEAD, instead of all the wasted years of flailing around in that sea of doubt and anguish and desperate disorientation and confusion!  Maybe, just maybe, if someone had sat me down and said to me, "Here are the things I'm seeing in Eli...and here are some of the criteria for an ASD (Autism Spectrum Disorder)... I saw some similarites.  I thought you might want to be aware...."  Maybe I wouldn't have been mad at all. 

Maybe we could have gotten a diagnosis before the age of nine.  Maybe we could have spared Eli some of the severe anxiety, if we'd known.  What ifs and maybes are pointless for him at this point, but MAYBE this can help your child.

I'm not going to lie.  The evaluation process has been years long and exhausting.  Possibly because we were just floundering around with no real direction and trying, trying, trying to find some answers!!  We were referred to counseling for his anger issues when he was four or five.  The sessions tended to make him angry.  How's that for irony?  He fought us on going.  I remember it not being all that effective, but we were doing what we'd been directed to do at the time. 

I remember going through the beginnings of the evaluation process the summer after Kindergarten for ADHD; the kazillion verbal questions, the packets and packets of paperwork, the missed days of work, the numerous appointments, just trying to get him some help, trying to get some answers.  The anxiety and the ADHD took about a year to be diagnosed.  Then the adjustments to medication, that only helped a little at the time. 

The age-old question of "to medicate or not medicate" knowing there are people out there who don't medicate, and those few who pass judgement on those who do.  How many times have I read or heard "My mother refused to medicate me and I owe her so much allowing me to be who I am...it's the reason I've accomplished what I have, and stand before you today."  or "I refuse to put my child on medication just to make him behave!  He is who he is!!"  More things to fill me with guilt and doubt.  

Eli on January 16, 2011 right after
he was baptized at church

Sometimes I doubt our choices to have Eli on the meds he's on, but then I see the Eli of today!  See him thriving?  See him succeeding?  I see a child who tells me he doesn't blame me for dumb choices I made 5 years ago, simply because I didn't know any better.  I see a child being invited for play-dates, sleepovers and birthday parties, hanging out with his buddies at church and cutting up with his friends at school.  His meds have helped to bring him to this new and better place where he can be a typical kid too.  For Eli, the meds are the right choice.  His life is so much better with them. 

It's been some time since we've had to live through a serious meltdown, or had a negative report from school for inappropriate behavior.  We have his medications to thank for that.

We still have to watch out for sensory overload, but we've gotten better at anticipating what might cause it.  We still work with some of the quirks, such as Eli insisting only one package of cereal be opened at a time.  All that cereal has to be eaten before the next package can be opened, and it's very upsetting to him if another package is opened before the first one is gone.  And evening snack has to be about the same time every night.  We know that we can't mess with any of "his routines" and if you do, you're bound to set off some anxiety, which might lead to a meltdown.  But Eli's getting better at recovering before completely losing it.  We still have to watch overloading him with too many directions at once.  Stick to one or two directions at a time, or the hands will come and grip the sides of his head and he'll squeal, "I have too much to do!  I can't do all that!"  We're used to his coping strategy of ignoring "new" people...it's uncomfortable.  He'd rather pretend they aren't there.  There are many, many other things with which he struggles to overcome daily, but to most of these things our family has grown accustomed, and other people don't see.

Eli has come so far.  We all have!  

I have every confidence he will continue moving forward, but we'll never forget how this journey began.

Clearing out the "Clutter"

Once in a while I get into a "pitching frenzy".  Stuff that has been sitting in that drawer, untouched for how many years??  Out you go!  Kitchenware that was "inherited" from a relative who has passed away, which now sits in the already overstuffed cabinet and hasn't been touched once in the five years since the funeral....See Ya!  Clothes I hate to wear, or I'm too fat to wear, or are just downright ugly or uncomfortable...You're so outta here!

My three guys know when I get in one of the frenzies they better not sit in one place for too long, or they might find themselves stuffed into one of the trash or donation bags! 

We have a Good Will Store in town called "New To You", and I suspect they love to see me pulling in to the dock where you unload donations.  I imagine a lot of the shelves in their store are lined with crap...Oh, I mean STUFF...that I have purged from our house over the years.  I don't know how we end up with all that STUFF.  It's not bad stuff.  It could be good stuff for someone.  It just doesn't belong in my house! 

Does anyone else know what I mean??  Is anyone else dealing with this phenomenon?? 

Sometimes I just want to throw out everything and start over.  Of course that would be entirely wasteful, but occasionally I feel like every drawer is stuffed, every closet is overflowing, every cabinet is packed to the point of bursting!  Where does it all come from???  I go through and purge and pitch and get rid of the clutter...and it feels really good for a while!  Very freeing!! Then I turn around and the drawers are full again, the closets can't hold another item and I know I'm going to make the New To You staff really happy once again.

In the last year I have begun clearing out the clutter in my LIFE as well.  It all began with a book we were reading in my Clump at church.... 

Before I continue, I'm sure that word threw some of you for a moment, so let me define.  Our Clumps are our Small Groups at church...we don't have cliques, we have Clumps.  I'll write more about my Clump another time, but for now, just understand it's my small group at church.

 

Add caption



 http://www.amazon.com/Crazy-Love-Overwhelmed-Relentless-God/dp/1434768511/ref=sr_1_1?s=books&ie=UTF8&qid=1334165738&sr=1-1



My Clump began reading Crazy Love, by Francis Chan last year - AWESOME BOOK!  Strongly recommend!  Anyway, in the first chapter, he talks about clearing the clutter out of our lives.  Most of us tend to DO too much.  A lot of what we do is probably really good!  But even so, if these THINGS are cutting into the really important parts of your life, then you need to make some tough decisions and let some of it go.  Are you sacrificing your family to do stuff?  Sacrificing your health?  Are you sacrificing your spiritual well-being?  Are some of your relationships sacrificing your mental or emotional well-being?

If you answered Yes to even one of those questions, it may be time to start clearing out the clutter in your own life.  Just as I pull out the overstuffed drawer and start examining its contents, muttering "Why is this in here?  Why am I holding on to this??  What purpose does this thing have?  What value does it hold?" -- just as I clear out the unnecessary STUFF from the house, I began to go through my life deciding what to keep and what to let go. 

Let me tell you, some of those decisions were tough!  I've backed away from a few personal relationships that were causing me too much stress.  I've let go of some favorite commitments or groups or classes that I really DO want to be a part of, but they were taking away from time at home, and that was affecting my family, so those groups had to go for now.  They were all GOOD THINGS!  Maybe one day when my kids are grown and they have lives of their own, I can re-join the Wednesday night bible study group, or get back together with friends to walk.  But right now, my family needs me.  ELI needs me, to be there, to support him, to help him, to love him and help him through his more difficult struggles.  I know where I'm needed most, and therefore I had to choose. 

As Eli will often remind me, "I'm way more important than _______ (fill in the blank), Mom!" 

Yes, E...you most certainly are.  You, Ben and Ash are far more important that doing any of those other things.

While letting those things go was quite difficult, ... others things, not so much.  Eli's neurologist at Children's Hospital who refused to smile at us, scoffed at some of the information we gave her about Eli, and couldn't even bring herself to look at my son, let alone speak to him....she was not so difficult to let go.  She was the Dr. who - upon witnessing Eli's emotional meltdown because he wanted one of the latex gloves in the exam room and I would not allow him to have it (because that's the rule in Dr's offices these days - no rubber gloves!  They are not toys!) - got up and left the room and didn't come back.  She patted Eli on the head as she walked out and said, "I can tell you are having a rough day", and that was it.  She was gone.  After sitting there for 45 minutes wondering what in the world was going on, a nurse walked in and asked us if we needed something....???  When we explained that we had been sitting there for nearly an hour waiting for the Dr. to come back, the nurse disappeared, came back with referrals to Psychololgy, Psychiatry and the Autism Behavioral Clinic (where his eventual evaluation finally came from last October) and ushered us out of the room.  We were being dismissed.

Eli reading in the car as we traveled
to a Dr. appt last week

Nope, it wasn't such a tough decision to let that Dr. go.  She had run her course as a resource, got us where we needed to be, with the referrals for getting Eli the help he needed, but the thought of spending time with her in that small room ever again was causing me unhealthy thoughts.  I felt joy when I called to cancel the next appointment, and politely let them know we would not be back.

Is there anyone or any situation in your life like that?

I recently stopped the appointments with another Dr. of Eli's, not because of any negative event, but because E's currently doing quite well, and to continue to go see her once a month was a waste of her time and ours.  Eli was no longer benefitting from the appointments, and she was in complete agreement.  She's there if we need her in the future...just call.  That too felt very uplifting, to let go of those appointment.

I've reviewed all sorts of things in my life.  I know it will take time to clear out all the clutter, and I know that somehow it will continue to creep in and re-establish itself over and over again.  It's certainly something I will have to stay on top of.  I've learned to say No to things I don't feel passionate about, and even to some things that I do feel passionate about.  Someone suggested to me that I start a support group for parents of children in our area who are on the Spectrum.  Wow...really? 

While it SOUNDS like a noble and beneficial undertaking, exactly when would I have time to do that?  I wouldn't even know where to start.  If I didn't already work two jobs, I might have time to research how one would actually go about doing something like that, but I still see it cutting into the time I need to be at home with my family.  I don't see where it would be beneficial to me or my child at this time. 

It's not a bad thing.  I'm sure it would be a good thing for someone.  It just doesn't belong on my to do list.

What about you?  Is it time to clear out some clutter in your own life?

Random worries

I'm exhausted today.  Might be the weather.  Might the upcoming full moon.  Might be the 3 a.m. trips to the yard every morning that I'm required to take so the puppy can "piddle", as my Grandma used to say.  Might be all of those.  Might also be that my mind is worrying over things to come.

As Eli was trying to wake up,
Sami jumped up to snuggle with him 

I try not to worry.  I really do.  I'm a firm believer that God is firmly in control, and if you fall to your knees and hand it all UP, you can walk away from it and it will resolve itself in the way it's supposed to.  I know it to be true as I have witnessed it over and over.  It may be a rough journey, but in that there is a purpose.  It may be a painful transition, but in that there is a purpose.  There are lessons to be learned, skills to be honed and knowledge to be gained in every possible event in our lives.  I lean on God through it all and trust that it is as it should be.

So why do I still worry?

I know exactly why...and it's not because I'm doubting that God has a firm hand on everything.  I worry about ME!  I worry that I've missed my cue, dropped the ball, failed to notice or understand my role or my job, that I will have ignored my responsibility in a matter that I should have been on top of, and therefore everything will fall apart because I didn't hold up my end of the stick. It would have gone according to God's plan, if I hadn't screwed it all up.

A smart woman would recognize that she doesn't have the power to mess up God's Plan in the first place.  A smart woman would say, "Yes, Kim...and if it did fall apart, then that was how it was supposed to unfold in the first place, and therefore you still should not worry."  My heart knows this, but my head can't seem to get itself wrapped around that very well.  Somewhere along the line my fear of failure has grown into its own entity.

I'm not sure how I ended up like this, thinking I have to be the fixer of the world, responsible for the world, on top of everything in the world.... at least in my little corner of the world.  Well, scratch that, I sort of know how... somewhere along the way, I said yes to ... "something"...no idea what, but "something".... and ever since then, all eyes have been on me expecting me to be in charge.  Someone decided I was responsible, reliable and dependable, and it snowballed from there.  Now I have to be on top of everything for everyone so that no one misses anything and everything gets done, or it will be my fault and I will have failed.

At least that's how it feels.  And it hurts.  It's overwhelming.  But if I don't continue to follow through then I will have let everyone down.  They'll all turn those accusing, disappointed eyes on me and I'll have guilt and no one to blame but me for nothing going right.  I can't live with that, so I keep on making sure I'm on top of everything.  I mean, really...what else can I do?!  There are no other options.

As a result, I'm constantly thinking about what's coming up in the future.  Planning.  Organizing.  And yes, worrying about certain things.

Today it began to dawn on me that this school year is passing quickly.  There are about 8 weeks remaining of this school year.  While the children celebrate this news, I begin to think about what that means for Eli.  It means that, in less than two months, he'll leave behind the most wonderful teacher he's ever had. 

(That in itself is enough to push me to the edge of tears!)  

It means that at the end of August he, and we, will have to start all over again, adjusting to a new school year, to new teachers, new classrooms, new rules, new schedule. 

(That in itself is enough to drain every ounce of energy from me.) 

The thought of playing "Finnegan Begin Again" leaves me emotionally tired.  Starting over again explaining Eli's needs, his quirks and eccentricities, his 504 plan, how they need to let him know, and let us know as well, if there's going to be a substitute so we can all work to prepare him in advance. We just try not to catch him off guard with a sub in the classroom or it can get ugly at times.  Preparing him in advance has been very helpful in making sure he, and the sub, have a good day.

And what about in two years when we're facing Middle School?  That's an entirely different environment, and it's not safe.  Not for Eli.  The teachers are not involved and nurturing like the ones in elementary school.  How can they be?  The environment isn't set up for that kind of care and compassion!  They have ALL the children from five different elementary schools in this district cycling through their classrooms like a processing plant.  They have curriculum to process and teach.  They don't have time to understand their students, and it's not really their fault.  They have information they have to get out there and limited time to accomplish it. There is not going to be room for shenanigans.

They aren't going to have the patience to put up with one kid's antics, OUR kid's antics, in their classrooms because he's not feeling comfortable with the constant changing of classes, the packed hallways, the noise and jostling.  They aren't going to understand misbehavior due to anxiety brought on by the pressure of having to get from one class to the next in a 3 minute time span, and you better not be late.  That sort of pressure will freak Eli out.  Nor will anyone be able relate to the sensory overload from the 40 lb backpack he'll have to tote around all day because they don't allow enough time in between classes to make a stop at your locker and still make it on time to your next class.  Nor is there enough time to go to the bathroom.  These poor teachers are not going to accept that Eli disrupts their classes and then 5 minutes later he has no recollection of doing so.  How could they possibly understand that?  They'll think he's lying.  They won't believe that he really forgot.  And he won't believe them when they accuse him of whatever he did.

And how am I supposed to protect my child from these experiences?  How is Eli supposed to succeed in that environment?  Do you really think he is going to be permitted to move his desk every day into a "safe zone" in every classroom at the middle school, the way he's allowed to now at the elementary school?  Ugh!  Yes, this is two years away but yes, I'm already worrying.  In fact, it makes me sick to my stomach.

How do I protect him and
keep him safe?

I'm not sure how I'm supposed to fix this.  I don't know what to do.  Eli is coming to the end of the best school year he's ever had. His diagnosis in October has given us direction, the team (principal, school psychologist, etc.) at the elementary school has been so wonderful about working with us, and with E to make it possible for him to succeed.

But above all, I credit his magnificent teacher for his "best year ever".  She has loved him as he is from the start.  She has met him where he is and worked with his strengths, and found ways to work around his struggles.  She has given him the freedom to discover new coping strategies for himself and put them into place.  The result has been been glorious!  And he loves her soooo much!  For the next two years, her knowledge and all the progress we all have made this year will be passed along and I trust he'll continue to be cared for, worked with, nurtured ... safe....at least through sixth grade.

Then everything will change. "Finnegan Begin Again", but even more so.  But I don't even know what to expect or what I'm supposed to do.  I've looked into online schooling briefly.  Eli is willing, but is that the right choice?  Removing him from socialization opportunities?  It doesn't really feel right.  But then again, it feels safe...is safe not right?

I feel blessed that we have two years to figure this out.  I am still leaning on You, God, because I know You will make sure things go according to Your Plan, but I need to understand my role.  I need to know what I'm supposed to do because I can't bear to have Eli coming home miserable and freaked out every day from negative experiences.  I don't want to start having phone calls from the school several times a week because Eli can't keep it together in the classroom. I don't want to back slide in middle school after he's made leaps and bounds during the last three years of elementary.

So I will try to not worry.  I have time to figure out my role and responsibility.  After all, think how much has changed in just the last 6 months!  Who knows how much can change in the next two years!  And just like that, I can put the worry away for the night, and maybe go get some sleep.  But I remain determined to find a way to protect my baby from that environment.  Who else will?

   

New Responsibilities

A week away from the next full moon and I'm starting to watch for signs of increased agitation in Eli.  The blinking tic had cleared up after the last moon began to wane, but it's starting up again.  The baby talking seems to be on the rise as well, but that's not hysterics or anger, so it's doable.  Eli's been pretty even-keel so far, and I have to wonder if Sami is already being a wonderful distraction for him.

Sami has been with us for a week now, and Eli's been entirely willing to have increased responsibility with her.  He is enjoying playing with her, feeding her, and taking her out to use the bathroom.  The novelty of it all hasn't worn off yet, and he just loves her so much!

Almost too much...he was perfectly willing to forgive Sami when she snapped at his face and her little needle-sharp tooth nicked his eyebrow.  Or the morning she lunged at him and slammed her head into his nose, giving him a five minute bloody nose before school.  "I'm okay!  She didn't mean it....I'm fine!"  She's just playing, but she's doing some serious damage to our Eli!

So we've had to lay down some ground rules.  When she's in a playful mood, Eli's not allowed to be down on the floor with her, or anywhere she can have access to his face.  Before she came to be with us, she'd been put in with the adult dogs for a couple of weeks.  Eli is about the same size as those big dogs, and we think she's trying to play with him the way she might have played with the larger dogs.  Sami doesn't understand that she can hurt him, that he's not a toy or another dog, or that she can't play rough with him.  So another new rule is that there's no rough-house playing, and no tug of war.  Sami cannot differentiate between what is okay to tug on, and what isn't.  So for now, there will be none of that.  When she's calm and sleepy, then he can snuggle with her, pet her and be down with her, because she doesn't bite at people or try to chew on everyone and everything when she's all sleepy.

Other than those things, she has adjusted quite well.  Housebreaking is a slow process, but that's to be expected.  We're crate training her and she seems to be doing very well with that!  She'll still cry a little, but usually 5 minutes or less, and she's doing really well with sleeping the night.  Overall, we're all learning mutual respect, and we're working with her to begin learning some basic commands.  It's going to take a while, but it will be worth it in the long run.  Sami is a sweet, sweet girl!  I'm with Eli .... I love her so much too!

I've been so impressed how involved Eli has been with her.  The dog has held his interest.  Yesterday, he took her outside on his own, clipped her to the run line and then the two of them sat together in the yard for some quality bonding time.  He loves to throw sticks and the tennis ball for her and Sami is proving what a talented "fetch" player she is!  She also loves to dig and carry sticks, as well as trying to eat them (we do our best to stop her from succeeding at that!)  I've noticed that when Eli is taking care of Sami, he comes across more mature, more like a kid who's about to turn 10 years old (which he is!), than the younger version of himself that he typically presents to the world.

Since Eli often acts so much younger than his years, it's easy for us to forget that he's not a tiny little kid.  I realized a little over a year ago that we were all babying him, doing everything for him, and assuming he wasn't capable of doing things for himself.  I saw it, and started making everyone else aware of what we were doing as well.

Eli wasn't thrilled with being suddenly forced to start doing things for himself.  There was a lot of whining, fits of frustration, proclamations of "I can't do it!  It's too hard!  Can't you just do it, this one more time?!"

But he did learn, it just took time and patience, and now he does so many things on his own that a year ago he didn't feel he could.  He packs his own lunch, he empties and loads the dishwasher when it's his week to do so, he takes his turn to clean the sink or toilet in the hall bathroom, he puts his clothes away, brings the dumpster up from the road and puts it back in place after the trash truck comes, folds loads of towels, and he takes his turns doing several other weekly chores.  Sure there's still a little whining and complaining about having to do it - heck, sometimes I whine about the things I have to do also - but gone is the day when Eli believes he can't do it.

Working with Eli to help him gain confidence has given me more patience than I once had, probably because it's been so rewarding.  It's fabulous to watch him decide to take care of his responsibilities, gathering up any supplies he might need, and tackling the job with confidence.  Helping him to learn these tasks has empowered him!

So if your child is dealing with challenges of his or her own, I urge you to help him be a part of your family team by having chores and responsibilities in the house, no matter how small.  Yes, it will require you to invest your time in helping him how to do the task, but eventually, your child will learn it, and how phenomenal will that be?!  It will be such a confidence builder!  Who doesn't love those "Hey Mom, look what I can do!!!" moments?! Our kids may not say it, but the effect on us parents is the same...maybe even greater.  I take such pride every time I watch Eli self-assuredly gathering up the toilet cleaner and toilet brush and head in to complete the chore that he knows perfectly well how to do, all by himself.  It's just one more thing I don't take for granted.

I think training Sami is going to have a similar effect on me.  Right now she's a puppy with her own agenda, but I know in time she'll learn.  I just have to keep working with her.  And I want Eli to be a big part of helping to train her.  I wonder if he'll experience the same kind of pride watching her one day that I experience when I watch him?