Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.





This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊


He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.


This past Saturday, he asked if he could help me with some pruning.


He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.


His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.






Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

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Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

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And he helped happily!!

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He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

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And Jackson supervised all of us.

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It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Pipes and Pipe Parts

I never know when I hear Aaron burst through the door at the end of his day, as he arrives home from his day group, just what all I will hear or what I will see.  He nearly always launches right in to some detail of his day that he just can’t wait to tell me about.  Sometimes it’s a funny piece of information.  Sometimes it’s about an event that excites Aaron.  Sometimes it’s distressing and not so exciting or funny.  Sometimes he frustrates me as he tells of something he has said or done that is inappropriate.  We certainly never know what a day will hold with Aaron.

While I may not know what a day will hold, I do know that often Aaron will be holding something in his hands.  Or he will be digging into his pocket for an item that he has found somewhere during his time away from home.  I often question how he came upon these various items.  Did he really find them?  Did he take them when he shouldn’t?  One thing for certain is that when Aaron spies something on the ground, especially, he will stuff it in his pocket in a flash.  We have had him take lots of items back to Paradigm, his day group.  Things we knew that had to belong to someone, or items that he had taken off of Barb’s desk, for instance.  Post-it notes…….various cords that belong to devices…….notepads……….highlighters. 

A few weeks ago, the day before Gary and I were leaving for a trip to see Andrea and Andrew in Houston, I heard the door slam when Aaron came home.  He thumped loudly up the stairs.  “Mom?” he loudly called.  “Where are you?”

He found me cleaning his bathroom.  As he walked in the bathroom door, he thrust a flower toward me and unceremoniously said, “Here!”  I found myself holding an Iris……a very suspicious Iris… I wondered just where he picked it and how much trouble did he get into and who was mad at him for picking their flower. 

I cautiously thanked him for the flower, and then asked him where he got it.  “I tore it off the plant,” he casually answered.

Umm, yes Aaron, that’s pretty obvious.  What plant?

So he told me that there were flowers growing at a house that Paradigm owns…..a residential setting where he often goes with Bryan to work on maintenance issues.  And I realized that Bryan knew about Aaron tearing off the plant, and that Aaron didn’t rip it off of some flowers growing outside of a business or whatever, and that maybe it was sort of all right.  And what could I do but put it in a glass of water while Aaron proudly watched?  He was trying to tell me that he would miss me while I was gone to Houston, so he tore the Iris off the plant for me.  It was a mixed blessing, I guess.  One that he was quite proud to have accomplished.

He recently came home carrying this:


Thankfully he and Bryan had stopped at a yard sale, so this was a legitimate purchase.  So he said….

And there was the eye ball.  I have no idea who might be missing an eye ball.


He finds money.  This, thankfully, was on our driveway so I didn’t have to worry about where he got it.


We’ve had some behavior issues with Aaron at his day group.  It came to a head when I returned home from our trip to attend my mother’s funeral.  No time is a good time to deal with these things, but to be forced to handle his emotional needs when mine were so raw was difficult.  I made some changes in his transportation, for one thing, and he is much happier.  He’s also much happier because of something we never dreamed.

Work.  He’s been helping Bryan, one of the Paradigm staff, work on residential homes that Paradigm manages.  Now this week they have been working on a new building that Paradigm bought.  Aaron rushed in the house to find me the other day.  He held his hand up to show me this:

“I worked in a place where there were pipes and pipe parts!!” he exclaimed.  So of course he picked up some of the pipe parts, slipped them on his fingers, and couldn’t wait to rush home to show me.  Then he showed Gary later, repeating the story with gusto.

“I like being with Bryan in that place where there are pipes!” he told us.  Who would have thought?

The next day he happily held up his hands yet again.


More pipe parts!!  “Bryan is working in that pipe place again!” he said.  And there was more!  I was thankful that Barb had talked to me on the phone before Aaron got home.  She told me that Aaron would be bringing some money home, and that no, he had not stolen it!  HaHa!  She knew exactly what I would assume.  Paradigm paid Aaron for the hard work he did that day.

After Aaron held up his fingers full of pipe parts, he dug in his pocket and pulled out some money.  It was a $10 bill!  He was so proud.  He told Andrea all about it later on the phone.  You would think he had made a thousand dollars.  The effect was just the same, regardless of the money amount.

Pride.  Aaron is proud of the work that he is doing, and proud to be helping in a tangible way.  He is proud of the praise he is receiving.  And like Andrea said, he feels like an adult who is doing real adult work.  Again, who would have thought?  But it does make sense, doesn’t it?  Aaron has the same needs that we have.  He needs to feel worthwhile and productive.

Plus he came home very dirty that day when his fingers were so full of pipe parts.  His face and arms were dirty, as were his clothes.  He actually agreed to take a shower at that time of day instead of waiting until the following morning.  Wonders never cease! 

Well, what made him seal the decision to take a shower in the late afternoon, totally out of his routine, was this comment that I made. 

Aaron, if you shower now, you won’t have to shower in the morning.

Bingo!!  His eyes lit up.  “I won’t have to shower in the morning?” he asked in disbelief.  No shower when he’s groggy.  No shower when we’re in a hurry to leave.  No shower when he’d rather drink his coffee and chill on his computer. 

So far, so good.  He has showered before supper for two whole days.  He is delighted not to shower in the morning.  He is very happy that his money he earned the hard way is safely tucked in an envelope, waiting for season four of Fallen Skies to be bought. 

I never dreamed that our week which began with Barb and I meeting with Aaron, talking firmly about his options and his choices, would end on such a positive note.  Oh, there will be bumps in the road.  There will be ups and downs, as always. 

But honest work and honest rewards are something that Aaron has responded to with genuine joy.  I am very thankful for that! 

Aaron has the same needs that we have.  He just doesn’t verbalize them like we do. 

But those fingers full of pipe parts and that smile on his face tells us all we need to know. 




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!