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.