Wednesday, March 27, 2013

No Words

Hello fellow lovers. Today I can't find the words. Maybe because today has been one of the hardest days for me and John throughout this entire hellacious autism journey for Jackson. It will all come to me in time, but today I am/we are overwhelmed with emotions. Everyday is a fight, but today we were fighting with our hands tied behind our backs. In learning more everyday about autism, the quirks, the good, the bad and sometimes the really bad, today was a rough one  friends. I definitely have a lot of emotions running through my mind and as my mind races, I can barely put a sentence down. 

I guess some days you just don't have the words. 

Switching from my feelings to something bigger than me, Autism Awareness Month is fast approaching and April 2 has been declared as Autism Awareness Day in Memphis. If you live in here, you should be there for the Light it Up Blue Event!!! I can't say how important it is for everyone to become educated about autism and just how much it affects so many people around you or maybe even you directly. I think any parent that has a child with autism would second that. 

Until I find my words.....


Monday, March 18, 2013

What One has the Other Must too

Kids fall. They get bumps, bruises, scratches and boo boo's. Ok fine. And even though kids are super resilient most of the time, it's hard for Mommy and Daddy to see their little monkeys hurt. 

What can I say, our weekend didn't go according to plan (whatever that means). But before we get to that, when Jackson was little he used to sleep walk which = recipe for disaster. Here comes my gold medal for "parent of the year". One night he fell out of his bed about 2am. I hear the thud, think "oh no!" and then he comes wondering into our room. No crying or reaction to falling out of the bed, he climbs in with us. So naturally I assume he fell, he's ok... now back to the slumber. So we go back to sleep and the next morning wake up to blood. A lot of blood. All over the bed, all over everything. (why did I not turn on the lights to make sure he was ok, I have no idea  it was 2am, that's why!) So I panic slightly, feel terrible that I didn't turn the light on long enough to check him through the night and realize quickly he's hit his face and hard. So a call into work and a terrible patch job on the wound later, we are off to the doctor. Because the gash was so close to his eye our pediatrician recommended we use surgical glue to close up the battle wound. Exhibit A: (gross, I know... and nevermind the chocolate on his face from rewarding the good behavior during the office visit, ha ooops!)

Then there's this last weekend. No matter the age, kids always seem to want what the other brother or sister has, but in this case I could have gone with only one of these eye-gashing episodes. So this past weekend the kids were watching a movie in our bed, just relaxing... that was until Hallie came down the hall and said, "I think I hurt myself Mommy" HOLY!  Ummm yeah! Blood everywhere round two.  I can see she is scared because she sees the blood and try to remain as calm as possible. She explains to me she was playing on the bed aka jumping and probably flipping like she's at "mishnastics" (which she knows she isn't suppose to do) and that she hit the dresser and then the wall. She too has busted her face open, same spot, same location just on the opposite eye. So another patch job and off to LeBohneur we go and I know Hallie's cut is deep. 

We get there (Hallie was less than enthused to be there obviously) and we are called back quickly. The paramedic assesses the damage and says they can sew up her face. (just lovely) I almost cried. The doctor suggested some meds to help her relax before they did the stitches and that they would make her a little drunk-like with her words/eyes/actions. In comes the comic relief. She was cracking us up! She could barely sit up, was asking about pop-cicles, random things and just before they started her stitches looked and me and said, "Hey Mom..." I said, "yes Hallie what is is?" and she proudly states, "Boom Shaka Laka" LOL! Where did that come from? Where did she even hear that??? We were laughing hysterically and in comes the team to fix eye boo boo #2.

Five stitches later and we have the second Exhibit A:


Totally not excited about getting stitches. Totally not happy with the black eye that is most likely on the way and totally not excited that we have to keep this thing dry. Oh and add to that no picking at them. Hopefully these lovely stitches and bruising will diminish in the next 7-10 days and we can put this one behind us and preferably for my sanity no more injuries to the head for either one of my monkeys! Now they will have matching scars on opposite eyes, just lovely! This is definitely one thing I could have gone without for either of them. I'm sure we'll look back on our matching scars one of these days and laugh. (ehhh maybe)

Trying to keep the house boo boo free. We'll see how long that lasts. Wish me luck...

Wednesday, March 13, 2013

Even Autism has Winning Odds

It's like the lottery. Will you defy the odds or will it just be another day of numbers on a line that make no sense but on the flip side comes with a huge reward if you're lucky enough to guess right. Never knowing what tomorrow will bring with autism (or Jackson, ha) it's like a daily lottery in our house. Some days make no sense, some days you get a few things right and some days you hit the jackpot (or at least in my mind we do). 

Coming off a weekend that didn't go so hot, I was worn out. Not to mention, this week is Jackson's spring break. He was originally registered for a camp where his surroundings would be familiar, the people were mostly the same and he was comfortable. Then it came. Camp cancelled. Dun Dun Dun!! CRAP! Well, now what? After hitting a few walls searching for a different solution, we decided to gamble just a bit and register for a camp at the YMCA. Jackson has never been there before. New places, faces and strange routines don't go in the same sentence as autism. So Monday rolled around and we loaded up to go. I spoke to the camp director who assured me they would take good care of him and that he would call me in case of a crisis or outburst. Needless to say I was just waiting on the phone to ring all day. 

Ye of little faith I am! Jackson always amazes me and for whatever reason he is having a great week with no set schedule, all new people and no sense of normalcy. Excuse me what?!? Where is my child??? That is not the Jackson I know but man what a relief! Isn't funny how we as parents put so much pressure on ourselves when it comes to our children. Just when you think things will go the worst way possible, they do great. Maybe I should give him more credit?? I know he is stronger than I could ever imagine. I just never would have guessed he would be this happy about something off his normal, tired and definitely beaten path. Maybe I should give myself a little more credit?? Maybe we are getting better at preparing for everyday change?? Who knows! 

Although I am not sure we are ready to test this uhhh few successful days as being ready to take on the world, we'll take small bites and victories when we can get them! It just seems as though this week Jackson has beat the odds of one challenge autism presents him with. Don't worry, our quirks, obsessions, and redundant eating habits at home are all still very apparent, but maybe this week is exactly what he needed. A little change of pace from the everyday "norm" never hurt anyone right? 

I say this today and tomorrow will be a disaster (LOL) but as always around our house... one day at a time. I'm just so thankful and proud that he made it this far since the last "camp" he attended outside his comfort zone, he was kicked out of before Wednesday was finished for behavioral problems. That was a tough week and a tough pill to swallow (mainly for me) because you only want your kids to do well and be happy. He was neither at the camp we got the boot from which broke my heart for him and I also felt (at the time) like I had failed him. (this was also pre-diagnosis) I guess we have come quite a long way since then. To all you other parents out there that have kids with autism I encourage you to keep going, don't be scared to try new things. Some will work and some won't and that's ok. Just don't lose faith in your little one because just when you least expect it is when they will surprise you the most!

And so far I'll take this week as a lotto jackpot of epic proportions! 


Saturday, March 9, 2013

Sad day...Count Your Blessings

So many times in our lives, we focus on everything we want/don't have/wish we had that we forget to be thankful for what's right in front of us.  A roof over our heads, a family that loves us and people that support you through the good and the bad. Yesterday  neighbor of ours lost their house in a fire. Total devastation. I cannot even imagine the sorrow and struggle for that family today. You know they have to question everything. Memories lost to a flame and belongings that are now just ashes. 

It makes you question why things like this happen. Why them? Why anyone? Why does God let things like this happen to good people? The good news is this isn't philosophy 101 or we would be here a while and we'd all be asleep before the end of this post, or angry from all the questions we have, lol. And while I'm not one to talk, I've had my share of asking the same questions about my life and knowing that God doesn't give you more than you can handle it sure doesn't make things any easier.

Last night after the circus parade of people driving by, walking by and going over to see the house, I found myself unplugging everything in the house. Things like this make us worry. They make you uneasy. They make you fear the worst. But they also make you thankful. It's a big slice of humble pie and a reminder that you should always be thankful for what you have. 

The good news is that they all made it out. They are all alive. They may have lost material things but they still have each other. Things could have gone very different for that family yesterday. Just last weekend they were celebrating a birthday for their little boy and today there is no celebration. 

What a true testament to remember that God protects you when you really need it. That even though a tragic event has happened, you still have the most important thing. It makes me so thankful for what I do have and for my family. It makes me count our blessings and be grateful that even though I wish my closet was bigger and that I wish this or that for my family, at least we have each other. 

This weekend I'm going to squeeze my kids and kiss them more times than they can count and remember and that each day is a gift from God. Our lives happens so fast sometimes and it only takes one small thing to change it all. 

My prayers go out to that sweet family. May God be with you and help you through this tough time. 


Wednesday, March 6, 2013

Add this to the Autism list

Ok, so Jackson has his quirks, his tremors, his own unique and sometimes strange ideas about whatever the subject may be at the moment. I get it. Sorta. But none the less I still get it. I am patient (mostly), I am kind, I try to be loving and understanding, but there is one thing that I CANNOT stand!


For the life of me I do not and cannot nor will I ever understand what is entertaining funny or appealing about licking someone's feet. I mean what! I just don't get it. It's gross, it's disgusting and yet he finds it hilarious. Why on earth anyone would want to lick, touch and really even look and study feet?

I guess it's just another mystery of what's really going through his mind. Having a child who is autistic is like the eighth wonder of the world. You don't know how it happens. It's just this mysterious thing that is just out in the open but no one can seem to give any one real explanation, only ideas and "medical" reasonings. You don't always understand why things are the way they are and I really don't understand his thought processing when it comes to all things autism. 

The whole foot licking thing is just another one of those things I'm not sure I'll ever understand but I guess it's just another small thing in a big picture. I only wish I knew how he can be so focused and obsessive on some things (feet) and then other things I want him to be able to focus on-likes school work, he can't. Getting back on my trail of searching for tools, resources and help groups I'm full steam ahead again no matter how hard it is. On top of ADHD and focusing side of things, we're starting to talk school plans for next year, new therapies and more evaluations to include a neuro-psychological eval and behavioral therapy suggestions. The behavioral part comes in because as sweet and kind as my sweet little hugger is, he can also have a polar opposite side and when that rears its ugly head, Jackson can become quite aggressive sometimes. 

In an effort to protect him, our family and anyone he interacts with I feel like the behavior therapy is the next big thing on our list to get started. By no means do I think he really wants to hurt anyone intentionally, I just don't think he always fully understands there is a line you can't cross. He doesn't understand that just because someone calls you a name it's not a personal attack. It's just that the kid calling you a name is just that... a kid. Just a silly kid doing silly kid things. They don't really mean any harm of course, but Jackson's perception is that he is being attacked and so good or bad, he reacts. Try explaining that one or being in a public situation where people have no idea who Jackson or anything about him. Yet they judge and stare because of his actions. Sometimes, well a lot of times that is a hard thing to deal with friends. It's uncomfortable and it's hard to know if the choice you make in that moment was the right one or the wrong one. Not that I care what anyone thinks, because I don't. My concern is am I making the right decision for Jackson at that moment. Anyone have the answer to that million dollar question? 

Taking one things about an hour at a time, I'm continuing on and putting one foot in front of the other.

But for real if he licks my feet one more time.... 


Monday, March 4, 2013

Retain or Refrain? Today Autism... I hate you.

Woah. The entire month of February got by me and all I could squeak out was one measly blog post? Well, not that I owe anyone an apology, but honestly I wish I had written more. So I guess all I can say is I'll try to do better this month. Last month was not the best in the world in my book. I lost my grandmother, I have a few other personal things going on and I have been working a lot lately. But the work is a great thing! I really enjoy my job, love the people I work with and I am grateful for the opportunity to learn and retain so many new things along the way. 

Which brings me to that word.... retain. As we all learn things, we retain the things we learn right? Or at least we retain bits and pieces and maybe after a second run through we retain even more, well hopefully. The point is we learn. We learn when we are babies, we learn when we are kids and we learn as adults. Heck, we even learn when we are old. And all those things we learn give us the knowledge and empowerment to pass down all the information we have retained over the years to our kids, grandkids, friends and sometimes even strangers. 

Knowledge is power, but retaining knowledge is most often easier said than done. So easily are we distracted by the television, the text message on our phones, kids running rampant through the house, the dogs barking at nothing but their own shadow. Even in the most absolute silence, it can still be hard to learn new things. It takes focus, time and dedication to the task at hand. I'm not going to promise I was the best at any reading comprehension test in school and that even now I still have to read things two or three times before it really sinks in. (don't lie, you know you have to too) But at some point I do learn. I don't give up and I keep going until I feel that I have accomplished what I wanted to. That's easy for me to say. 

What's not easy for me to admit is that damn (excuse me, I'm a little angry tonight) word... that stupid scarlet letter "A" word is like a freaking curse on the retention meter. Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. (Yeah, this would be one of those pity party, feel sorry for myself posts so read on or don't - I have to get all this out) How dare you always rear your ugly head and make him struggle. 

Simple words that he should be able to somewhat easy for him retain by now. Words that come home every week. The same words with only one or two added each week. Shouldn't be too hard right? Well it is. It's painful. It's a struggle. It's an all out WAR just to get through that list some days. And you wanna know the crappy part? It's like the refrain of a song. See that's the part of the song that you always remember, the part you retain and why? Because it's repeated over and over and so you remembering the refrain is just easier. Sure you can fake it and mumble through the verse. But when the refrain comes on, it's like a full on concert and you know every word. That's how Jackson retains these words. They have repeated themselves so many times that of course he remembers. As long as they go the same way, every time. Just like the refrain. So really, is that learning? Nope. That's called the refrain. Memorizing the word list in the order that they come home in the same folder the same printed way, and that's how he knows them. But did he really retain them? Nope. Mix them up and mess up that "refrain" order and he barely makes it through the list with heavy coaching and a LOT of patience.

I sat and watched my husband trying to help my son tonight. I sat and watched Jackson struggle, but John too. The fact that Jackson has ADHD doesn't help us on the focus meter either, but watching two people you love both struggle in two completely different and heartbreaking ways is seriously misery. I know that children with autism struggle. I know that being autistic presents it's challenges in so many environments and in so many ways. What I wouldn't give to see the world through Jackson's eyes just for one day. To know what it's like to see things the way he does. I can't even begin to wrap my head around that.  Then to see my husband. To see him struggle with frustration. To see it in his eyes that he too is heartbroken that it's so hard for Jackson and right now it feels like there is NOTHING we can do to change any of that in this moment. John would and will never give up on Jackson, but tonight he had to just walk away. And I know he walked away because it is frustrating. But I also know he didn't want to take that frustration out on Jackson. I don't blame him at all. I think he did the right thing actually. Sometimes its better to walk away and just let your other half take over, because as parents, we too can become overwhelmed. We are also not alone, so I could tell John was leaning on me to take over, so I did.

Yes, I am angry. Yes, I am frustrated. Yes, this is one of those days, that I can't take much more. I just want to punch something. I want to take all my anger and frustration out. Out on anything but Jackson. I just have to get all of this off my chest today. I never promised that all our days would smell like roses. In fact, today just stinks. In all my positive hopes and dreams for Jackson, there will come some struggle. Unfortunately this is one of the days that is not easy. I know things will get better and I do try to stay positive 99.9% of the time, but today I am taking the .01% to put out there that every single day is a fight. A fight for a better tomorrow. And though maybe today is getting the best of me, it's only today. Tomorrow will be a new day. But as I mentioned a long time ago when we started Jackson's journey with autism. I am putting it all out there. The good. The bad. The ugly. And I'm here to tell you people - learning with a normal mind is not easy. Learning with autism is an entirely different ballgame because you are down 10 points before you ever start. Retaining the little things that come so easily for the rest of us, is like scaling Mount Rushmore for Jackson when it comes to retaining anything he learns.

Singing my refrain today for sure....

Today. Right now. I HATE YOU AUTISM. How dare you. How dare you keep my sweet Jackson from being able to learn. How dare you make it so hard for him. How dare you always rear your ugly head and make him struggle.