On Clayton: Stream of Consciousness

Clayton is on his first trip to church camp this week.  What a milestone!  He took his Daddy with him (the reluctant camp counselor), but even with Daddy, this is such a big event for him to experience.  I am so excited he is getting to enjoy this rite of passage with the other kids!

Even though he is gone for a couple of days, he's always on my mind.  My life is totally planned around his schedule.  His feeding, his therapy, his meds.  My entire days are scheduled relative to his needs.  I've felt a bit lost to tell the truth, but it has given me time to sit and type out some other things that are on my mind concerning this precious child . . .

I wonder constantly about what's going on in that little head of his.  While I don't know the specifics, I do sense him struggling during this period of his life.  I don't know if it's the addition of Jackson into our family, his age, or a combination of both, but he is becoming more and more aware of himself and his limitations.  Oh, I think he has always been aware that he is "different," but before, the awareness didn't come with frustration.  He is frustrated so easily these days.

One of the main areas he is struggling with right now is mealtime.  Meals are supposed to be enjoyable, right?  Great time for the family to visit and discuss the day?  Clayton loves anything to do with food.  Food Network.  Top Chef.  Paula Deen.  Cooking with Daddy (and sometimes Momma!).  He has come so far in his feeding therapy. When he was a baby, food touching his lips made him gag.  He is at the point now where he licks all over salty snacks and other tasty foods.  He was doing this when Jackson was born.  Today, things in his mouth don't make him gag, but the problem is he won't chew and swallow.  If a bit of food does happen to get in his mouth, he just sits and begs someone to get it out of his mouth because he "can't like it."  The next step is for him to PUT SOMETHING IN HIS MOUTH, CHEW IT UP, AND SWALLOW IT. Sounds simple, but he has to take the step.  Meanwhile, Jackson is snacking on all kinds of tasty treats and gobbles down his supper as Clayton watches. This is where the disruption comes in.  If we all sit together to eat, nine times out of ten, it will end with Clayton throwing a massive fit about me eating, or Jackson eating.  It's usually directed at me:  "Momma, NO EAT!!"  And when I say fit, I mean fit!  Throwing forks, hitting himself, etc.  We've started punishing him by putting him in time out in his room, but it is so HARD to do!  Not because it's hard to punish him (he has consequences for other misbehavior), but because who can blame him for being upset?!  Here he is, forced to watch other people eat great smelling food, that when he licks it, tastes good, but he doesn't get the full enjoyment of the actual meal.  Can you imagine having to do that meal after meal?  Granted, his belly gets full via his feeding tube, but we all know that food is most enjoyed when it's actually tasted!

I don't know.  It's gotten to the point where I avoid eating with him and Jackson together if I can help it.  Which defeats the whole purpose of family mealtime.  And that's also hard to pull off since Clayton wants to be with me while I eat.  He'd just rather Jackson stay out of the picture.  Kind of hard to make that happen . . . There is no easy answer.  We just have to wait.  Things happen so slowly for Clayton, but they do happen!  I pray he takes a leap of faith someday soon and bites a bit of something good off to chew on and enjoy!

***************************

Other things flutter in and out of my mind concerning Clayton.  Satan gets a hold of my thought process so often and has me thinking that our time with Clayton will soon be over.  It's like when things have been good for a little bit I start to panic, knowing the next bad event is right around the corner.  Satan picks up on that tidbit and turns it into a full blown panic attack on some days.  And oh, the guilt!  The guilt I feel for enjoying Jackson's milestones!  It seems like I'm betraying Clayton in some odd way for relishing Jackson's abilities.  And in my warped, Satan-attacked spirit, I keep thinking Clayton is going to die because I celebrate Jackson in this way.  My brain knows that this is not how God operates, but my worry-infested mother's heart analyzes this situation to death!!!  Am I crazy?  Do other mothers go through this with typically developing siblings?  

So many changes as he grows and develops.  So many thoughts to wrestle with--both for Clayton and for Brian and me.  He's having to learn to live with disabilities and limits, and we're having to learn how to help him do that in the least restrictive way possible.  We are doing the best we can; however, the older he gets, there ARE boundaries.  We are becoming more and more aware of them as a family.  And more so than ever, we are counseling our own hearts on the ever changing barriers in Clayton's life.  We are completely committed to helping him cope with these changes, but it's going to take a lot of prayer and guidance from the Lord because some of these situations are really tough to handle!  Only the Lord can help us give the right words and the right comfort to Clayton when struggles come.  In the meantime, I pray for peace in Clayton's little heart. 

Through the Woods

We took Clayton for a "hike" this weekend and boy, were we in for a workout!  Since he's being doing so well driving the power chair around the house, we have slowly been letting him venture out into "unknown territory" so he can tackle driving with the distractions of different environments.  In these new environments, he is still doing relatively well, but it seems in each new place he gets a touch of rebellion and can't help but turn on the speed and head for the rough terrain.

He was bound and determined to get off the pathway through these woods.  Brian had to stay close by to keep tabs on where Clayton *thought* he was going to go.  

By the end of the trail, he had gotten most of the off road driving out of his system and we were able to relax more, but it seems he has to go through this exploration stage with each new place we visit with his power chair.  Not unlike a toddler who has to touch every. single. thing. when they visit a new place.  He never experienced that particular stage of development, so I suppose he's just playing a little catch up five years later!

25/52 Crave

On the Phone Again

I skipped the theme of "Crave" this week simply because it was too much like last week's "Make it Tasty."  My creative juices just weren't flowing on that one.  I took very few pics this week, but as usual, I caught one of Jackson talking on the "phone."  Photos of him talking on the "phone" and of both boys on the gator seem to be a recurring theme in my Project52.  But when that's what you do with your spare time, that's what you get a lot of pictures of!!

All Aboard!

It all started in Forth Worth.  When the passenger train came through the stockyards, Clayton literally wigged out.  He was beside himself with fright.  He immediately wanted to leave and "get in the van."  So as usual, we made haste to do his bidding . . . but in true Clayton fashion, he hasn't stopped talking about it since! That train is the only thing he has mentioned about the Make-A-Wish trip, and he mentions it all. the. time.  We've talked about all kinds of trains since then, and when we see or hear one, our world stops to focus on the train. Moreover, in true Jackson fashion, he has copied his brother's obsession, but taken it even further. 

We are now faithful viewers of the The Dinosaur Train.  Clayton watches the beginning and the end when the train is visible, but Jackson watches the entire show with baited breath, constantly yelling "WAIN!"  We might would watch other cartoons like Thomas the Train or Chuggington, but they come on before dawn, and you all know early doesn't fit our style. . .  At any rate, when I came into the hall and found Jackson had made his own little train, I couldn't help but grin:

 He was very proud of his handiwork, and even prouder that I had noticed.

I'm just glad we had remembered to disable the power chair.  Otherwise, he probably would have tried to pull his "train" down the hallway!

Father's Day 2011

For Father's Day this year, we did the only thing you can do in the Arkansas heat:  we swam the day away at my brother's house.  The newest addition to their pool was the slide, and as you can tell, the kids were having a blast with it!

Jackson was all over the place, swimming with whoever would have him.  I tried arm floaties on him for the first time and he wasn't too crazy about them.  He'd rather have a holder all afternoon.

 Clayton was more interested in sitting in the shade with my grandparents than swimming, but we talked him into a few dips, just so he could cool off a bit.  

 My brother, the king of his domain:

 And of course there were the snacks:

Everyone seemed to vacate the pool when Jackson started eating his watermelon on the steps--he seemed to keep it in the water more than his mouth!

Overall, a super day with the familia!

YAY!

My photo was featured on the MCP Actions Blog!

Happy Father's Day to My Dad!

Don't you love the long-haired look on a new dad?!

24/52 Make it Tasty

Berries in the Backyard

Since I did strawberries a couple of weeks ago, I hadn't planned to do berries again.  But I cooked a crumb cake and took many photos and not one of them looked near as inviting as these berries out in nature!

Following Duh

Jackson has a pet name for everyone.  He calls Clayton "Duh." We have no idea where it came from, but it doesn't really matter.  He's decided that his brother will be Duh, so Duh it is!

Jackson watches Clayton closely and mimics his movements and even his attitudes about things.  He keeps a watchful (albeit two year old) eye on him.  Just in these last weeks I've noticed their relationship becoming even more involved and more dimensional than ever.  They are starting to communicate in a way that only siblings can.  And it is SO interesting to watch!  I mean, sure, Clayton has always impacted people, but his impact on Jackson is in a totally different way.  It's just so NORMAL! So "regular people!"  I stand amazed everyday at the smallest of blessings--even the one of my youngest son wanting to follow his big brother around and around the yard, and just letting Clayton lead the way.  This is something that Clayton isn't used to doing (in this manner, at least), so how cool it is that he has a playmate that is willing to let him lead on?!    

Here Comes Summer

**We're full on into summer "break" and we're as busy as we always are

**Finished up Prayer Conference last weekend--an intense and wonderful experience!

**Clayton's driving skills are improving by the day.  He is getting the hang of negotiating tight spaces and even realizes when it's best to back up a bit before going forward.

**The days are HOT and Jackson is playing HARD.  He is literally soaked in sweat when he comes in from outside.

**Jackson is quite the social bug.  He's getting lots of chances to play with his little friends and is even giving them nicknames.  (Jackson doesn't call anyone by their real name except for me--everyone else gets a pet name from him).

**I'm falling behind on my Project52 photos because I've been working so hard on my business side.  I'm having just as much fun organizing all of the details as I do taking the photos!

**Brian is working like crazy.  The Lord continues to shower him with business despite changes in the economy.

**We made our first trip to the lake yesterday and Jackson was a little worried about Daddy wakesurfing.  He didn't know quite what to make of it!

**I'm pretty tired lately.  Could have something to do with the fact that since we returned from Fort Worth, I've yet to go to bed before 1:30 a.m.  Somehow or another I'm still functioning when it's a well known fact that I NEED my sleep (and lots of it!).

23/52 Trying to Escape

Brian took off the other day before he got the gator unloaded.  Jackson was determined to figure out how to get it off the trailer and he brought Navan along as an accomplice!

 "I think we can just plow over the back."

 "or maybe we'll go off the side . . ."  

Meanwhile, Navan is having second thoughts!

 "Quick!  Hide so they don't see us!"

 "Maybe if I grin for Momma's camera she won't notice our plan."

"No worries, Navan!  I've spotted reinforcements!  Big men are coming to help us!"

S'mores, Anyone?

A couple of weeks ago, when the weather was still halfway bearable outside, our friends invited us up to the lake for a day at the cabin they were renting.  It was great because we mostly spent our time just relaxing and visiting.

Everyone was determined to have s'mores, so Brian and Karson worked on a fire . . . took a while to get it started, but once it got going, we got our fill of sweets!

 As usual, Clayton spent his time cooking and visiting (he loves Mr. Keith!).

 

And Jackson spent his time eating!

A Party for Jackson

Since Jackson's first birthday went by without true celebration, I was so glad that all was well and we were able to celebrate with him this year!  We decided Memorial Day would be a good time to cut the cake, and while we didn't throw a huge bash, it was special nonetheless.

He dug those hands right in the icing when I put the cake on his tray.  And I was so proud of him for blowing out his own candles!

 He has a sweet tooth.  He gets it from me.  :)

 The presents are always fun . . .

 . . . but not necessarily for the adults who have to put them together!

 Jackson spent almost all day outside in our "pool area."  Most of the day was spent with Tucker--they swam a lot, but had to take many breaks for rides on the gator.  

 After Tucker left, Jackson basically fell out on the floor in sleep.  He had to rest up for his next guests.

 He ended the day with more friends, and they swam until dark.

 All in all, a great day!