Saturday, August 30, 2014

I Worked on a House!

As I wrote in my last blog, Aaron had a rough seizure day on Tuesday of this week.  When he made it downstairs that morning, he said, “Mom, I don’t feel good.  The reason was……I’m guessing was……I couldn’t sleep well last night.”  Thankfully, he doesn’t remember his seizures and so he was trying to understand why his head hurt and why he felt terrible.  He had another seizure later that morning.  His whole day was spent on the couch.

That night I played a game of Skip-Bo with him.  It was sad to just sit there and watch him… slow and clumsy.  He had a hard time holding the cards, and it took him a long time to think of the moves to make…..decisions which usually come quickly to him.  In fact, when we play Skip-Bo he is often urging me to hurry up.  But on this night he was really out of it.  I prefer the quick, sharp Aaron for sure……even when he’s trying to cheat! 

But on Wednesday he was well enough to go to his day group, and by Thursday he was fully back to normal.  On Thursday morning I took him with me to Chick-fil-A, where we got a free breakfast biscuit.  We brought it back to the house and sat at our table, enjoying every bite.  I was enjoying Aaron’s laughter, though, and his being back to his usual funny self. 

That afternoon, when he returned from his day group, he bounded in the house in his usual loud fashion.  He found me downstairs and as always, with no hello or any other greeting, he immediately said, “Mom!  I worked on a house today!!”  He then excitedly explained that he had gone with Brian, one of the staff, to work on one of Paradigm’s residential houses.  Brian is getting this new house ready for clients to move into, so Aaron was one that went with Brian to help.

Now helping in this fashion is totally out of character for Aaron, so I was surprised.  Surprised that Aaron went……surprised as he told me that he helped……and very surprised that Aaron was excited about it.  He told me that he helped Brian put up “fire detectors.”  And that he helped Brian by handing him tools.  And that he helped “tear carpet.”

“Mom!  We cut carpet with a slicer!!”  

Well, I know Aaron loved that because he always wants to help me cut vegetables in the kitchen.  You know…..a guy and a knife.  But this isn’t always a good mix with Aaron involved.  I asked Aaron if he liked all this house work that he did.

“Well, it wasn’t my favorite,” he replied.  “I’m not a house person.”

And I smiled……and smiled again when he saw me talking that night on the phone with Gary.  Aaron leaned close to my face several times while I talked to Gary.  “Mom!!” he tried to whisper……but not quite achieving that, as usual.  “Mom!!  Can I tell dad that I worked on a house?”  

So I let him tell Dad that he worked on a house, while I watched Aaron grin from ear to ear as he talked.  He paced the family room over and over as he talked about the “fire detectors” and the carpet and the tools.  It was fun to see……and I knew that Gary shared my surprise at this working on a house business that Aaron has rarely enjoyed before.  

Aaron had also told me that one of the other clients went along to help as well.  I was a little concerned when he told me that it was J who went, because Aaron and J often seem to have issues.  But Aaron said things went well between them, except that he added:  “Well, some of the time J and I were rowdying around.”

Now I wonder what Brian would add to that…..but I’m not sure I’ll ask.  I want to relish the thought of my new handyman Aaron, at least for a while.

And there was one more element to this working day that Aaron had.  Lunch.  Aaron’s favorite activity, by far.

“Mom!!  Brian took us to a Chinese restaurant!  We had soup that looked like it had worms in it……and parsley weeds!!”

Well, isn’t that the most appetizing meal I could imagine?  I know that Aaron will never be a promoter for a restaurant.  I’ll mark that off his possible job list.

He seemed to fully enjoy the wormy soup, though, and the egg rolls he told me he ate, because when I asked him later if he wanted some supper, he said, “No, I’m full.  That Chinese restaurant…..their food is BIG!”

Aaron, it’s not the food that’s BIG.  

Later, Aaron and I took Jackson on a walk around our back yard.  After all that BIG food, I especially wanted to take Aaron on a walk! 

We were near the end of our walk when Aaron sighed and said, “I’m tired after doing all that fixing!”

It’s hard being a house person, isn’t it, Aaron?  Hard for you…..but so much fun for me!

Tuesday, August 26, 2014

My Wormy Cucumber.....and Aaron

Last night was a seizure night for Aaron.  We are so thankful that he doesn’t have constant daily seizures like our friend’s son, Elijah, has.  I told Wendy this morning that I don’t know how she does it apart from God’s grace.  I know that each of us who know the Lord depend on His grace for the many circumstances that we face in this life.  Having a suffering child is tough.  When Aaron has seizures is when I feel most vulnerable emotionally.  His autism is high functioning, though in its own way debilitating, but he at least can function.  His autism makes him at times very frustrating and it causes him to be in trouble more than we like, both here at home and at his day group.  Or then he can also be very endearing and funny, even hilarious. 

But his seizures……they make me sad.  They show me the seriousness of Epilepsy…..the danger.  I may be vulnerable emotionally on these days, but he is vulnerable physically.  And as his mother, that scares me….and makes my heart hurt. 

However, I know from experience over the years that I cannot dwell on the scary or on the negative, even when it comes to my son… first born.  Being aware is one thing.  Being defeated with constant worry is quite another.  And constant regret……that’s one thing that I very consciously pull my mind away from when it starts down that path.  I would love for Aaron to have a normal life, a job, a wife and children…but he doesn’t and he probably never will.  Living with regret over those issues only pulls me down and doesn’t do anything to help Aaron.  Plus it’s not honoring to God, Who wants me to trust Him in all things.  That means ALL.  Even Aaron, my son, and my hurt over his pain and difficulties.  

Aaron slowly made it downstairs this morning after his three seizures.  He tried to stay up and awake but as is typical for him, he laid back down on the couch and fell promptly asleep.  I covered him with his favorite blanket……the animal print blanket…..and he slept deeply until he had another large seizure.  Now he is awake off and on, talking about wanting his coffee that he missed this morning……will it still be hot…….when can he have it……worried that he won’t get to drink it……typical Aaron.

Earlier, while he slept and with me being unable to leave this area of the house for fear of another seizure, I stood at the kitchen sink.  I was washing the produce that I had gathered in the garden yesterday evening before dark.  Some tomatoes…..okra…..a red pepper……one pear that I was able to reach from our pear tree……and a few stray cucumbers.  On one of the cucumbers I saw the unmistakable signs of worms.  The brown, crusty spots on the outside of the cucumber were my clue, so I grabbed a paring knife and cut into the peel.  Yep, there it was…..a yucky worm……and then another nearby.  It was tempting to just throw the whole cucumber away, but I’m pretty thrifty about my garden produce that we’ve worked hard to raise.  There was still plenty of good left in that cucumber, so I washed the remainder and put it with the other healthy produce.  Aaron loves cucumbers, so he can eat it later.

This might sound strange, but Aaron’s a lot like that wormy cucumber.  He has his issues…..his “worms”……..that disrupt his life.  The autism….the Epilepsy……they have completely changed his life from what we thought it would be.  When placed beside his sister and brother, we can see a stark contrast.  Andrea, a scientist and geneticist in a major lab……and Andrew, working on a professional NHRA pit crew.  Their lives are dreams come true for both of them.  We love hearing about their work, even when we don’t understand half of it.  It’s exciting and fulfilling for them.

Aaron is like that cucumber, yes.  He has some chunks removed……some expectations that we had for him that had to be removed.  But he has amazing value if we but stop and look.  God does NOT create mistakes.  Aaron has tremendous worth.  He draws us to God in ways we probably never would have been drawn otherwise.  He keeps us humble.  Oh, does he ever!!  He keeps us at times bowed down with worry or frustration or embarrassment.  But listen to the verse God gave me this morning:

“But You, O Lord, are a shield about me; my glory, and the lifter of my head.  (Psalm 3:3)

I love how God gives me what I need, when I need it, from His Word.  He lifts my head to look not only up to Him, but to look at Aaron with new eyes……eyes of faith and trust in the God Who loves Aaron and loves us.  God has a plan for Aaron that is every bit as important and amazing as the plan He has for Andrea and Andrew.  We just don’t always measure Aaron’s value that way, but God does.  And He reminds me on these days that I need to as well.

Aaron……my wormy cucumber……just in this little area of my house, God has once again spoken to my heart.  

Friend who is suffering today, never doubt God’s plan and His love for you.  Let Him be the lifter of your tired head.  He does care…..He does have a plan……for all of us.

Including my wormy Aaron.  My perfect Aaron, with lots of good in him that God is using. 

Sunday, August 24, 2014

A Bathtub and Other Stuff

My goodness, is August nearly over already?!  I seriously don’t know where the time goes anymore……and I realize that I’m sounding just like my Grandma used to sound.  Funny how that happens.  I feel like Aaron when he came into the kitchen after we had been into August a day or two.  He saw that my calendar page had been flipped to August and he said, with great surprise, “I didn’t know it was August!  I guess I wasn’t paying attention.  I was still on that July thing!”

Some days I think I’m still on that March or April thing!  Then I walk outside and am hit with these typical Kansas August temperatures.  UGH!  The temperature was 102 today when I took Aaron down to get him a haircut at Great Clips.  His name was called quickly because I had signed him in online.  It’s always nice to be called fast, probably more for me than for Aaron.  I never know what Aaron will say or do while we sit there in that small waiting area……….but I do enjoy the looks on the faces of the others sitting there with us as they try to figure out Aaron.  Good luck with that.  But today he didn’t have time for hardly a word before his name was called.  He stood up and I reminded him to hand me his glasses…….and as always, he stood there and also took off his watch.  He would have also given me his ring if he was wearing it.  I always wonder if the other patrons are waiting for him to remove his shirts and shorts. 

The haircut and beard trim went quickly.  Aaron answered the hair dresser’s questions but didn’t make any conversation today.  I handed the girl his debit card, which she swiped while he was putting on his watch and his glasses.  He signed the receipt, humming his monotone hum the whole time, which made both the hair dresser and me smile.  Then he grabbed a Dum-Dum lollipop from the gift display on the counter while I took the Great Clips pen from his hand before he stuffed it into his pocket.  I know him so well.  But not well enough, because while I finished writing her tip on the receipt, Aaron said that he would be right back as he quickly turned and was out the door before I knew it. 

Oh brother, I thought!  And just as soon as I got to the Great Clips door to leave, Aaron was barreling back inside……all smiles……..telling me that he had tried to open the door of the martial arts studio nearby.  He has asked and asked and asked about that place, so he decided to grab the opportunity and check it out himself.  Too bad it was closed…..for Aaron it was too bad.  Not for the unsuspecting people in there who would have been loudly interrupted if Aaron had been allowed to barge in.  I must remember this the next time Aaron gets his hair cut………or somehow manage to always take him on Sundays, when the martial arts studio is closed!

Aaron has had some intestinal trouble today, which for Aaron nearly always means diarrhea.  Usually he comes up to me and very softly says, “Mom, I have a problem.”  And I nearly always know what he means.  The other day he said, “Mom, the way I pour my cheese, it gives me diarrhea.”  

No, Aaron, it’s the way that you EAT your cheese cubes that gives you diarrhea.  More specifically, the amount you eat…….which is the amount you pour in your bowl.  OK, maybe it IS the way you pour your cheese that gives you diarrhea.  I need to think about that.  He’s usually right, in the long run.  Sorry for the pun.

Speaking of puns and irony, Aaron doesn’t get those at all.  He loves to read the comics, at least a few favorites, every day.  He read this comic in the paper during supper the other night.  I so wish I could describe the conversation between him and Gary as Gary tried to explain it to him.  I should have just grabbed my paper and started taking notes right then.  Aaron totally didn’t get the comic.  I ended up with the remnants of the conversation after supper as Aaron still tried to understand what the bowling pins meant. 

“I get it!” he finally said.  “They’re just gonna ACT like they fell!”

Well, not really, Aaron.  And off I went again, trying to explain it.

“I get it!!” he said again.  “They don’t want to be hit!”

Again I explained.

“I get it!!” the broken record repeated.  And I waited.

“They’ll act like the fell DOWN!!!”

Whatever.  Yes, Aaron!  Hahaha!  Isn’t that funny?!  

He agreed and we were both happy.  Sometimes I just have to come to grips with the fact that he will NOT ever get it…….ever.  And he is happy, so I may as well be, too.

I got him a new set of sheets last week.  He was with me when we found them at Big Lots and he LOVED them.  Cheetah print sheets……….right up Aaron’s alley for sure!  They went very well with his animal print fuzzy blanket that he loves.  I washed the sheets and last Saturday we put them on his bed.  He was very happy.

But not for long.  He came downstairs a couple mornings later and with great disappointment told me that those sheets just didn’t work.  I asked what was wrong with them and off we went into the world of Aaron trying to concretely explain the reason that the sheets didn’t work.   But he just couldn’t do it.  He couldn’t explain what was wrong, even as he used hand gestures and tried to answer my questions.  We went up to his bed and I saw that the top sheet had gone way down, so we fixed it and I hoped for the best.  

The next day it was the same story…..and the next.  He said the side came undone.  He said the sheet was too big.  He said it was the leopard part that didn’t work……although I thought they were cheetah, but I didn’t say that.  It was already too confusing.  I told him that I thought the texture of the sheets made them slick.  “Yeah!!” he agreed.  “They slick off of me!!”  There!  We had it!

Finally on Wednesday we just took the top sheet totally off and put on another top sheet.  However, the bottom fitted sheet kept wrinkling up……and with Aaron’s tactile issues, this wasn’t working.  It was a HUGE relief yesterday to take the sheets completely off and make his bed with a tried and true pair of sheets that I know will work.  The cheetah/leopard sheets are cleaned and nicely folded, waiting for the next donation pick-up.  

Lots of other things happened this week.  Let’s see……he stubbed his toes, but they’re OK.  Aaron goes on and on when something like that happens, wanting to talk it to death and figure out every aspect of his stubbed toes.  He finally pointed to his toes and said, “Mom, it was just these two toes.  Have you hit your few toes before?”

I assured him that I have indeed hit my few toes before and it sure felt like I had hit LOTS of toes.  And he understood that and he agreed.

Wheel of Fortune finished up their Spa Week.  Aaron was very interested in just what a spa is and what one does at a spa.  He finally felt like he had a handle on it…….unlike the bowling ball comic……and couldn’t wait to share his understanding with me.

“Mom!  A spa is where they get in a bathtub and other stuff!”

I wonder if I want to know what the other stuff is.

And I have just written about a lot of “other stuff” that has been our week with Aaron.  I could write a lot more “other stuff” but I should stop here…..for your sake.  I always have more stuff, trust me, after each day with Aaron.

Tomorrow we start a new week.  New ups.  New downs.  New stuff.

Here goes!