Thursday, August 15, 2013

Traumatic. Brain. Injury.

There's a country song with lyrics that say, "I wish I didn't know now what I didn't know then" (go ahead, take a minute to figure it out...). Over the past three weeks I've realized: I'm glad I didn't know then what I know now AND that I should stay off of Wikipedia when it comes to all things medical.

I saw my "baby" bloody in a ditch--just hit by a car.  It was almost like an out of body experience. Well I've never had an out of body experience, but if I were to have one, this is how I envision it would be.  What was coming out of my mouth and what was running through my mind weren't matching up, but it's possible that's how I'm wired (you'll never know though).  Regardless of the words that were coming out of my mouth, in my head I was thinking, "He's conscious. This is good. He's going to be ok." We get to hospital #1, and by this time I was in full on rational, get things done mode. Within 30 minutes we had 7 friends standing outside of his room listening to the doctors and praying like crazy. The news came that he had no broken bones, no internal injuries, but he did have a fractured skull and a hematoma on his brain, so we were headed to the trauma hospital.  Still in rational mode, although survival and denial mode are probably more accurate, the thought that was running through my head was, "If they take the clot off, he's gonna make it." As they wheeled him away for surgery, I asked the doctor if he was going to make it, and she said yes.  I was so relieved, I asked her for a hug, and we went on our way down to the waiting room. At that point, in my head was, "If he gets through surgery, he's gonna make it, and he's going to be fine. We'll be on our way home soon and this will be a distant memory." Fortunately, that is how it played out, although the distant memory part isn't there yet.

Over the past three weeks, I've begun to process and feel the weight of what could have been.  You see, to me, I figured if Aaron made it through surgery he would make a full recovery.  I didn't comprehend at the time that he could live, but with different long term outcomes: brain damage, paralysis, vegetative state....I'm not sure that I still fully comprehend that. Quite honestly I don't want to fully comprehend that. Having a mostly non-verbal kid to begin with is trickier to assess pain, emotions, and what he's really thinking. We had a follow up at Children's Hospital a week and a half after the accident.  I didn't know what it was going to be for, I just do what the doctors tell me to. When we got there the appointment was with the rehab team.  Rehab? Well that didn't occur to me.  Huh.  Again, because of his autism, it's different.  They asked us a ton of questions (because Aaron certainly wouldn't answer them) and looked him over. I kid you not, the doctor said, "I don't understand.  I don't understand how he could have the injury that he did, and be where he's at today. It doesn't make sense." I understand.  This is where faith and science don't meet. I walked away with the realization of how much of a miracle my son is. A week after that, we were back at Children's for a follow up CT scan and appointment with neurosurgery. Another layer of realization.

Modern medicine is amazing.
I believe that faith in God and the power of prayer, resulted in a miracle.
It's a miracle my son is still here on this earth.  
It's a miracle my son is functioning like he was before the accident.

We met the driver of the car the other day. A very, very nice man. A man who felt terrible and told us that was the worst night of his life--the sound of the accident still plays in his mind.  He quickly added that it was probably the worst night of our lives as well. I showed him the image of the CT scan, and he showed us a picture of his car (I will no longer make fun of Prius' least I'll try not to).  Looking at the damage to the car the man told me he was surprised that Aaron didn't have a broken pelvis.  Huh.  That thought never occurred to me.  He gave Aaron a hug and went on his way, hopefully with some closure. I walked away with another layer of realization of what could (should) have been.

I drive that road often.  Last night I was driving and watched my speedometer go to 35 mph.  Aaron was hit at probably 35 mph. I visualized the accident happening as how I understand it went down. I was sick. The extra layer of cushion Aaron has, his insane flexibility, and him not understanding what was about to happen and therefore not tensing up, helped. Having autism played a part in saving his life. Another layer of realization. If he were a "typical kid" I could better assess where he's at right now, but alas, he's a guessing game. In my denial of what could have been, I find myself treating him as if nothing ever happened.  He has this tic now that he didn't do before the accident that annoys me--how's that for ungrateful? I have to keep reminding myself (with the help of my neighbor the nurse) that he just had a major accident that he shouldn't have walked away from. 

So here I am, 25 days after my son got hit by a car, and my biggest problems with him are keeping him off the scooter (which was easy as soon as we hid them in the neighbor's garage), keeping him off the trampoline (not so easy), and jumping through all of the insurance hoops.  On a side note, if you tell doctors you own a trampoline, they suddenly treat you like you are a child abuser and belong in prison. Just letting you know! As time goes on, I am more and more thankful for his life, as challenging as it may be. The little things just got a lot bigger, and the annoyances got a lot smaller.  I'll have to remember this the next time he ruins something! Or maybe even now as he picks out the marshmallows in the Lucky Charms and throws away the rest. :)

Sunday, July 28, 2013

I no longer have the right to say, "I feel like I got hit by a truck"

I have a plaque that my mom gave me that says "I know God won't give me more than I can handle, I just wish He didn't trust me so much".  That seems to be a theme in my crazy life.  In the challenges of life that I face, I like to think I handle them with grace and humor (a lot of humor). As my little monster is sleeping peacefully on the couch while I write, I am humbled by the grace (and sometimes humor) others have shown to me over the past week.  If you Facebook stalk me (I know there are at least 121 of you according to the "likes" on my status update) you know THE story. If you don't stalk me, then you have to wait for the stories! I suppose they are worth the wait.

6 days ago the little monster (who is now 12 and not so little) escaped, hopped on his scooter, took off in the middle of the road, and was hit by a car.  You know how sometimes you wonder how you would react if you were in a trauma situation with your child...well, now I know...we'll leave it at that.    Dad was there about 20 seconds after it happened, and I was there a minute or two after that.  It was dark.  Aaron was wearing dark clothes (and no shoes).  He was riding his scooter in the middle of the road.  It was a country road with no sidewalks or street lights.  It was an accident.  The driver pulled over and called 911.We are still waiting for the police report to piece together exactly what happened because we were with Aaron, but my heart goes out to the driver.  I cannot imagine the images he will live with. 

Aaron was transported to the closest hospital, and a trauma team was working on him when I got there.  Amazingly, his vitals were stable, he had no internal injuries and no broken bones (kind of).  A CT scan showed a multiple fractured skull, and an epidural hematoma that was pushing his brain 6mm over.  They decided to transport him to the major trauma hospital where he underwent emergency surgery to remove the clot.  It's surreal listening to a neurosurgeon matter-of-factly telling you how they are going to remove a chunk of your son's skull, remove the clot, and hopefully they'll be able to put it back on right away, but they may have to refrigerate it for a few days to let the swelling go down.  They are confident (at least they sounded confident) that once they get rid of the blood clot he'll make a full recovery.  By this time it's 1:45 in the morning and they are wheeling him away to surgery. For two hours husband, four friends and I waited for the surgeon to come in and let us know that not only did they get the clot, but there was no bruising inside the brain and they were able to reattach his skull, titanium plate and all (oh and they didn't shave his head--totally weird)! He should make a full recovery.  He was finished with surgery around 5:00 am Tuesday morning and he was discharged at noon on Thursday.  2 days after brain surgery he got to go home.  2 days. Aaron is recovering nicely...I'm sure he feels like crap and has a nasty headache, but he looks better every day. Everyone's comment is (even when he was in the hospital), "he looks a lot better than I thought he would".

True to who we are, there have been funny moments in this story: Bryan Adams lyrics that were spoken and not sung at 3:30 in the morning while Aaron is in surgery and we're delirious from how long we've been up and needing some comic relief from the gravity of the situation.  The next day one of the nurses asked me if he was wearing a helmet, and of course the answer was no.  She asked me if we had one and I told her that we did.  She said that if we didn't have one that they would send us home with one (how nice)--I asked her if they looked cool because I might change my answer.  She laughed and told me they weren't all that cool, so I kept my original answer. We also found out that neurosurgeons don't have the same sense of humor that we do.  As they are explaining traumatic brain injury husband asks, "so does this mean he can't jump on the trampoline or ride a scooter as soon as we get home?"  They answered him like he was serious and they couldn't believe this idiot would think those activities were okay.  I'm also thinking, what else do I need to do to make the news? I mean, come on.  With my stories???  But then I think, there would probably be a bunch of idiots out there commenting on what kind of parent wouldn't watch their child...blah blah blah, and then I would be mad and need medication so I didn't rip some heads off--that wouldn't be good.  

A lot has happened in the past week, so much that I could write a novel that would put you to sleep, but the theme is: my family is loved. Prayers, rides, food at the hospital, groceries, meals, cleaning, visits, looking out for my other two kids, getting Aaron's room ready for him to come home, and offers of help are too numerous to count. Different friends and family have played different roles, and apparently I still need to learn to accept help from others. (For those of you who really know me--that's totally lame because I can do it myself!) We are so blessed.  I am hoping that I can get back to writing harmless antics that Aaron has done rather than this craziness, but for now, here we are.

The first day we were at the hospital a dear friend brought me a gift that brought a much needed laugh.  If I remember correctly, they taste nasty together, but tomorrow I'm planning on seeing if the combination tastes as nasty as I remember--just in case.  :)

Wednesday, May 15, 2013

Are you kidding me?

There are some days where there aren't words to even describe the madness I live in.

Last night we were doing a last minute yard party (although I don't think my kids would use the term "party") before the rain came again. We (and by "we" I mean "husband") had the older two outside mowing the lawn, sweeping the patio and weed-eating.  Aaron went outside and hung out on the retaining wall while everyone was working around him--well everyone except for me :). I figured he was probably secure in the backyard, so I went in the house.  Being outside was much better than him sitting on the computer, or so I thought.  When I peeked outside to do an "Aaron check" (making sure he was still in the backyard and not wandering the neighborhood) I saw him bending over the retaining wall, and spitting dirty water out.  Huh.  I had a feeling I knew where he got the dirty water, but I didn't really want to admit it.  Right after he spit out this water he came running inside and grabbed a straw.  At this point I had a pretty good idea of what he was going to do, but rather than stop him, I decided to follow him with my camera.  My boy did not disappoint.

Yes, that is him sucking NASTY water out of our fire pit, trying to hold it in the straw, and spitting it onto the wall.  My husband can't believe that I'm not stopping him, and I told him I would as soon as I got pictures.  After all, a picture is worth a thousand words.  You need the visual to see how nasty this actually is. I seriously wonder what is going on in his head when he comes up with these things!

Thursday, April 4, 2013

Spring Break

 It's spring break for us!  If I were 20 years younger it's possible that spring break would have meant living it up in Florida/Mexico/anywhere other than rainy Puget Sound.  Actually, it wouldn't have been that kind of spring break for me, but I can pretend.  But onto today's reality.  This year for spring break we decided to actually capitalize on the sunshine (something virtually nonexistent in Western Washington), and take a couple of day trips.  People who know us would not classify our family as "outdoorsy".  In fact, a few people in my family may be allergic to fresh air.  So you can imagine the surprise in my kids when we told them we were going to take a drive to hike to some waterfalls.  We were not met with overwhelming excitement, but we forced them to go anyway.  We needed to get out of the house and hoped that Aaron would behave.

There were three awesome parts to Day Trip #1.  Destination: waterfalls.

1.  Aaron was contained in the car for a one hour drive, for a total of two hours.  Nice.  There's not much he can ruin buckled up in the car.  Except for that one time where he got totally naked while he remained buckled up.  Oh and then there's the time that he opened the door while I was driving.  Never mind.  There are all sorts of things he can do in the car, but this time he sat quietly (most of the time).

2.  We learned that Aaron has a healthy fear of waterfalls.  You can get fairly close to one of the waterfalls, and when we were trying to walk down there Aaron formed a death grip on Husband's hand.  Husband was gently encouraging him and he was having nothing to do with it.  When your minimally verbal kid says "NO WATER", you aquiesce to his request. We were thrilled at the development that he had a fear of danger (at least this dangerous situation).

3.  We all got to see nature AND get exercise.  Double bonus.  We could have done without the incessant complaining from the 15 year-old who would rather have been killing imaginary bad guys on the XBox than spending the day enjoying God's creation with his family, but I'm pretty sure at 15 I would have been complaining too.  Now exercise isn't something that Aaron is really a fan of.  I suppose if he were having to run to get the last chocolate chip cookie before I ate it he wouldn't mind it so much.  But to walk for the sake of walking...not so much.  He was a good sport for a long time (like 30 minutes).  He got to flap his hands at the fish in the fish hatchery, and again at the rushing of the waterfalls.  But walking for the sake of walking got old real fast.  Eventually whenever we got to a fork in the trail, and we would stop so the four of us could argue discuss which way to go, Aaron would plop down and refuse to get up.  After a few times of his sit-in protesting, we decided to head back so we wouldn't have to carry him out of there!  We had some good laughs over his refusal to get up and how ridiculous we must have looked trying to get this kid to keep walking.

All in all the trip was a success (especially since he got a donut out of the deal).  It was a great way to kill 5 hours, and he didn't ruin a thing!  Yay for Day 1.  Only 6 more days to go!        

Tuesday, April 2, 2013

Happy World Autism Awareness Day

Unless you live under a rock you have probably seen somewhere that today is World Autism Awareness Day, and April is Autism Awareness Month.  You have probably seen some of the statistics:

2002  1 in 150 children
2004  1 in 125 children
2006  1 in 110 children
2008  1 in 88 children

Currently 1 in 54 boys is diagnosed with autism.  
1 in 54.  

You've got the people out there who say it is now a broader diagnosis, and others who don't buy that line.  You've got the people out there who swear it's caused by vaccinations, "leaky gut", the environment, genetics, or having super smart parents (I like to think it's the super smart parents because that means I'm super smart--yay me).  Most people have an opinion on the best intervention, and others think no intervention is needed at all.  You've got some parents yelling and screaming over all sorts of things (acceptance, education, insurance, various interventions), you've got other parents who are curled up in a ball in the corner, unable to accept the impact of an autism diagnosis.  You have parents who want their kids labeled, and others who refuse to utter the word autism as if it's a stigma that will socially isolate their child from all of the world.  You have people who think autistic kids are just unruly kids who need a good spanking time out, and other who think that because they're autistic they shouldn't be disciplined at all.

And then you have me.  :)  On the one hand I applaud those people who have strong opinions, but on the other hand, people within the "autism community" can be just as closed minded (perhaps even more so) than the ignorant people on the outside looking in.  Here's the thing--I really don't care.  Just like you, I have my own opinions (that I generally keep to myself), but at the end of the day, guess what?  My son is still autistic.  At the end of the day we STILL don't know what causes autism, we STILL don't have a "cure", we STILL don't understand the complex workings of the human brain.  In the midst of all of the unknowns about autism, there are a few things I know, and life lessons I have learned along the way. 

1.  I don't need to know WHY my guy is 1 in 54.  To me it doesn't matter.  He's mine. 

2.  What doesn't kill you makes you stronger.  Thank you Kelly Clarkson for singing about it because now I have a tune to remind me!

3.  I'm popular--seriously popular in my town.  If there was a mother-of-an-autistic-child popularity contest where I live.  I would win.  No joke.

4.  Perspective is imperative--hey that's pretty catchy.  It could ALWAYS be worse.  ALWAYS.  That being said, I'm not gonna lie, the amount of sympathy and admiration I get because of the stupid things Aaron does feels really, really good!

5.  Thick skin is handy. 99% of the time I really don't care what people think about me, my parenting or my kid (I'm not perfect--sshhh don't tell my kids or husband that).  Walk a mile (or 1/10th of a mile for that matter--you'll give him right back) in my shoes, and then we'll talk.  It's unfair to expect ignorant people to know what it's like.  You can't fix stupid.

6.  Just because I had hopes and dreams for my kid that will most likely never come true doesn't mean that if he were "typically developing" (let's be P.C. here) he would have those same dreams.  Would you really feel like it was the end of the world if one of your "typical" kids decided to not get married and have kids?  (And if you would feel like it was the end of the world, might I suggest you get help for your control issues). It's okay to grieve those things that you feel like you've "lost".  I've done my share of grieving, and every once in awhile something happens and that sadness pops up.  There are plenty of days when autism sucks.  It does.  I would be a liar if I told you that it doesn't hurt to see your friends' kids who are the same age meet milestones that you will probably never see.  BUT, if I focus on all the things Aaron can't do, I'll miss out on all of the things he CAN do.

7.  I've had opportunities and experiences that I never would have had if it weren't for autism.  I have made new friends and helped complete strangers.  Heck, I've been on the news, spoken to graduate students at a university, and given a speech in front of hundreds of really rich people who were donating to a good cause.  I told you, I'm popular (and humble).

8.  I don't hang my hat on what the "experts" say.  My favorite is: if they aren't talking by the time they're 5, well, you're outta luck.  Guess what?  Aaron was 10.  Those experts can shove it....

9.  I get to celebrate all kinds of things that other people take for granted.  I will never forget when I was so excited that Aaron played in the toilet because that meant he was aware of something in his environment.  Seriously, I was elated.  Although it got old quick.

10.  I have a firm belief in God's divine wisdom, and He clearly believed that I was the best mother for Aaron.  I'm not sure why He's that crazy, and you had better believe that one day I will ask Him that question!  God won't give you more than you can handle--I just wish He didn't trust me so much.  Another one of my favorite quotes.  It's sitting on my piano.

11.  I've learned a new language that is full of acronyms.  I don't know how many I am up to, but it's a lot.  It's fun to throw them around so I sound smarter than I actually am.

12.  Laughter truly is the best medicine.  In the trials of autism with so much that is out of control, I have control of my attitude.  I have options: curl up in the corner (guilty), get super mad at some of the ridiculous things that Aaron does (guilty), or take it with a grain of salt and choose to see the funny side of it.  Most of the time I choose the last one.

And finally,

13.  Red wine and Banana Taffy help.  (Although I don't recommend them at the same time--it's nasty).

Tuesday, March 5, 2013

Siblings saved his life

My older two children deserve a medal of honor.  Together they saved their brother's life (or maybe they saved their mother's life)...either way....all members of our family are alive and uh well.  Maybe that's a little extreme.  How about they saved us the expensive copay to commit me to Western State Hospital.

Our garage has turned into one gigantic garbage collector.  For some reason, when we ask children to take out the recycle or put something in the garage they hear, "Wah wah wah wah wah wah wah" and translate it to "Hey take this, and just throw it anywhere in the garage.  Anywhere is fine."  Needless to say, this interpretation combined with my lack of desire to make them ACTUALLY do what I told them to created one big disaster.  It was kind of like Hoarders with a small area carved out to park my car.  Getting in and out of the car was quite a feat, and we were always tripping over things trying to get in and out.  Yesterday Husband decided it was time to clean out the garage.  It was sunny (which is super rare in the Northwest), so it was time to end the procrastination.

Aaron was on the computer watching the same 3 second clip from a Veggie Tales movie, so we brought the older two kids out to break down some of the boxes.  BIG mistake.  I know better.  I know better.  I know better.  Why don't I listen to myself?  Oh I know--because no one else does!  My son goes back in the house to find a box of popsicles unwrapped and dipped in sugar, all over the kitchen counters and floor (nicely staining the grout on my counter tops and leaving the floor so sticky that three times over with a mop didn't even get it).  Since he saw the mess first, we made him clean it while we continued working on the garage.  (We were losing daylight, and the contents of our garage were all over the driveway).  A little bit later Daughter comes back out and says, "Mom, do you want me to clean your bathroom?  You should probably see it."  I tell her that if she wants her brother to live then she should clean it and not tell me what happened.  She can tell by the tone in my voice that I'm probably kidding.  Probably.  I didn't really want a recap because I pretty much knew what happened.  My trash can confirmed my suspicions, a full bottle of dish soap and shaving cream were completely empty.  Seriously!  I suppose the upside is that at the end of the day I had a clean garage, a clean bathroom, and a mostly clean kitchen with sticky floors!  It could be worse.