Life is hard.... and then you sit down.

"That was a bad idea!" 

 These are the words that automatically spew from my mouth if I sit down at any given point throughout the day.  
I'm not sure, but I can probably guess when it started.... I'm going with sometime around chasing a one year old, nursing a six month old, and pregnant with a baby girl! 

Today was a rough day-
   I feel like CRAP!  My Austin allergies have gone from annoying, to full on hammer to the face sinus infection.  We were suppose to host a Valentine Box making party today, but there was no way I was making that happen. (And if you know me, you know I must have been feeling really bad!) Luckily, a buddy took us in today because I was seriously concerned that I would not survive without knocking myself out, only to wake up while CPS were hauling off the kids I had accidentally ignored all day long! ;)

It was also a rough day in the way of emotions.  I get that I am on "high alert" right now when it comes to Jackson.  Trying to make all of this happen regarding getting Angel, doing all this research about service dogs and Autism, reading all these new blogs I have discovered about special needs children... Jackson is at the top of my list right now!  
Today started with something wonderful!  While still all snuggled up in bed this morning watching "19 Kids and Counting" together the mail man brought us a package.  It was Angels service dog vest and all the accessories that we had picked out for her!  Jackson was very excited and was walking around the house with his tether system (a belt that goes around Jackson and is leashed onto Angel's vest) on talking to his invisible buddy!

Seeing him with his huge genuine smile of excitement holding that beautiful vest, made specifically for a beautiful creature, who will be protecting, loving, and bonding with my Snugglebug for the next ten plus years, definitely got the emotions running on overdrive!  

And then.... something happened.

It was a small insignificant thing that would be no cause for alarm if it had been with any of the other kids playing, but it wasn't any of the other kids... it was Jackson.  All the friends were playing Pirates and kids (or zombies or something!) and Jackson had gotten "captured" (I think!).  I saw it happening, and I'm pretty sure I knew what was going to happen, but a part of me, occasionally does a good job of knowing that protecting him from every situation is not helping him at all.  
He was being held down, captured by the "other guys".  His friend had him pinned by his arm and I could see he was starting to panic being pinned to the ground unable to move.  Them from across the yard I felt it... in my stomach. It was panic, fear, helplessness, terror.
But it was just a silly game?? 

Then I heard Jackson say, "I don't want to play this anymore" and that feeling that was in my stomach, jump straight to my heart.  His friend didn't let go and about two seconds after that, he lost it. 
I watched, heard, and felt him go into full breakdown mode.  He screamed his terrifying horror movie scream, I screamed, he curled up into a ball shaking and crying and I ran as fast as I could.  I screamed at his poor friend (who was just innocently playing a game)"let go of him", I scooped him up into my arms, and holding him as we were recovering together, I remembered.  

This isn't the first time I have "felt" what Jackson felt, when nobody else could.  It's not the first time, I saw something that nobody else would.  

In the beginning, it didn’t take long to notice some uniqueness about Jackson.  He was the BEST baby!  He was very quiet and chill.  He didn’t mind hanging out in his car seat for however long we needed him to, and as long as he was wrapped up tight and safe he was happy.  This was a HUGE benefit for me considering I had a 17 month old running around and by the time Jackson was five months old I was pregnant with his little sister!

However, by the time he was six months old it was obvious that he was a little too, chill!  He was basically happy with just sitting there in a swing or car seat and showed no interest in sitting up or moving around.  He ended up in physical therapy to learn how to sit up, how to crawl, and how to walk.  Each time though, it only took a couple of sessions for him to figure it out.  The therapists pointed out that it was as if he just needed to be shown what to do and how to use his muscles and he was off and running (well, sitting, crawling, and walking… you know what I mean!)  The concept of wanting to do something different and the interest in experimenting to figure it out was just not in him.  But, as soon as he was shown exactly where to put his limbs, exactly how to straighten his back, and exactly which muscles to work to make it happen, it was a done deal!   Looking back now I can see the AS plain as day.  If only I knew then, what I know now!

Speaking was the next indicator something was different.  He was very quite. He didn’t do any cooing or the typical sounds babies start making before the words are formed.  He did very well with the signs we taught him; like “food”, “more”, “all-done” and I think since he had the signs he didn’t feel like he needed to mess with the words.  When he was about a year and a half I took him to a speech therapist.  I was concerned because he wasn’t talking.  He wasn’t telling us what he wanted; he wasn’t even trying.  At this point he was starting to get very frustrated with the fact that we couldn’t read his mind and would cry or have a breakdown if we didn’t figure it out right away.  However, when I took him into the therapist office and told her he isn’t talking at all guess what he did? He recited the entire alphabet for her!  She was shocked!  Then she started counting and so did he.  He not only counted to ten in English, but also in Spanish, French, German, AND Japanese (thanks to the Baby Einstein videos that he LOVED to watch)!!  YOU SHOULD HAVE SEEN HOW SHE LOOKED AT ME!!  “This child is showing no signs of delay, in fact he is Incredibly advanced for his age”, is all she could say.  “Yes, yes! I know he is advanced because he can say the alphabet and count in several languages. That’s because he loves sitting and watching the Baby Einstein videos and he has memorized all of that….  But, he doesn’t talk to me.  He doesn’t say “can I have a drink”, or “I’m hungry”, he won’t even say “hi, Mommy” to me.  He is Very smart, I know that, he has an amazing memory, that’s obvious, but he won’t communicate at all.”  The woman still thought I was insane considering she was expecting an infant that didn’t make a sound and what she got was something entirely different!

You should have been there in the car ride home!  Me talking to a one year old saying “Jackson Wallace, you are not allowed to count in ANY language until you can start talking to mommy and tell me what you want!  I’m serious, little man… no more Japanese for you!” ;) 

The next couple of years continued on like this.  Jackson did a lot more crying and had a lot more breakdowns the older he got and the more frustrated he got that we didn’t know what he was thinking, needing, or wanting.  He slowly started picking up words, but would never go beyond a one-word statement like “food”, “drink”, “that”, “more”.  It was hard for all of us because we didn’t know what he wanted to eat, what he wanted to drink, what “that” was, or what he wanted “more” of.  He would have a breakdown if we didn’t guess right and it made me very sad that he was so upset all the time.  We talked to several doctors and therapists; even had Early Intervention come out to the house, but for the most part they would see how advanced he was academically and just tell us that he is being a two year old.  “The terrible twos come with lots of temper tantrums” we were unconvincingly reassured. 
 

My motherly instincts never let me believe he was just throwing temper tantrums.  I’m not new to the kid world.  I had already gone through the “terrible twos” with James and there was nothing terrible about them!  I know the breakdowns may have looked like a little boy throwing a fit to everyone else, but I could see the frustration, the intense sadness in his little eyes because we didn’t understand what he wanted and he didn’t know how to tell us.   

 I could feel it, literally, inside of me.  I could feel his frustration and sadness.   

By the time he was two he had taught himself how to read by playing starfall.com on the computer.  He was like a circus attraction to our friends!  New people would come over and one of my friends would say “Jamie, give Jackson a book.  You have got to see this!”  Jackson loved every second of it, but it made me sad that all those words he could so easily read were only something he shared with the books and the computer, but not with me. 

Basically by the time he was three I had already self diagnosed him with Asperger Syndrome.  Even though there really wasn’t a lot of information about AS with regards to toddlers; and typically kids are not diagnosed until after they have started school, but by then I had read enough to realize he was basically defining it for us!

It's not that every mother doesn't have this talent.  There is a deep connection shared between a mother and her children.  Trust me, I am one of those Mamma Bears that has no problem letting other children, or adults for that matter, know that their behavior is not going to fly around my kids. I'll be the first to step up and the last to back down, if that's what they need.
But it's different with Jackson.  His heightened emotions are intense and very real in me.  Not just something that I recognize, but something inside of me, almost consuming my soul.  It's like I'm his voice, the only voice he has the ability to use to let the universe know that he is different, unique, and amazing.

Here's the thing.... It's exhausting!  He needs me to be his voice, he needs me to help him learn, he needs me to be strong enough to let him experience things that make him uncomfortable so that he can fight through Aspergers instead of surrendering to it.  It means letting him continue to play pirates with his friends even knowing there will probably be an issue.  Do you know how hard that is?  Knowing, in so many situations in our life, that my sweet child (one of the children I would do ANYTHING to keep from fear or pain) MUST go through those moments of complete Terror in order to see that he survived and came out the other side.  Because every single moment that a child with Asperger Syndrome is protected from being uncomfortable gets him that much closer to surrendering.  To justification that whatever the situation, it was not worth experiencing. 

I won't let Jackson become a silent recluse.  I'm going to stop him from being the "typical" genus that ends up divorced and constantly in trouble at work because he is brilliant and dedicated, but has no social or communication skills with other people.  I have to make him uncomfortable.  I have to let him be in situations that may scare him to death.  I'll have to watch, knowing that the fear is coming, feel every ounce of it right along with him when it happens, and then talk him through it so he sees he survived just fine.  All the while acting like my heart isn't breaking and pleading for me to give in to my protective side and shield him from the world that just doesn't completely understand. 

That, my friends, is only one of the reasons why my particular Life is HARD.... and a very real reason why I don't sit down!  Because, I'm emotionally and physically exhausted!  And when you give in, and sit down,

It's SO much harder to stand back up!

(on a quick side note, though- After a full day, when the kids are alseep, and it's time to relax with a glass of wine and a couple of episodes of Modern Family and Big Bang....  
Oh. My. Gawd!  Does it feel SSSSSSOOOOOOO good to sit my butt down!!)