Denver Diary Day 26: Non-expanding Recreational Foam

Today was a great day in Denver...the weather was fantastic (which is code for waaayyy cooler than Charleston, SC!!!), we had a fabulous breakfast made for us by a local company, Cade made some new friends, and therapy was a success.  But I guess today really started last night...that was when Cade fell asleep on his own for the first time in months!!  You have no idea the joy I felt when I turned around and saw him curled up with his blanket fast asleep under the covers!  I would say it was because he was tired, but I'm pretty sure staying up 24 hours like his episode last week constitutes as pretty tired, and he definitely wasn't falling asleep alone then.  Plus the same thing happened tonight, which has really made me think.  Cade was placed on an anti-depressant for anxiety during the first part of the year...we couldn't take him into a store without him worrying about people "looking at him" and he was really struggling.  Just a few weeks on the meds helped with that, so we were happy.  But looking back, especially after the crazy drug interaction that we just lived through, I'm thinking that the meds were probably the beginning of his major sleeping problems.  Don't get me wrong...he's really always struggled with staying asleep.  But it's only over the last several months that we have had the struggles with actually getting him to sleep.  I'm on top of that and will be investigating it further...but our main prayer is that the anxiety will not return and we can just forgo that medicine right now.

Today's therapy was excellent.  I can say that Cade met a huge new goal today.  He actually sustained playing with Julianna, Eric, and I for the entire length of the therapy session.  I'm talking for 45 minutes, folks!!  That might seem like nothing...but for a little boy that just two months ago couldn't walk into the room and even choose what to play, it's enormous!!  It was so much fun for all of us to actually sustain play with Cade.  He was able to generate ideas and situations, and was very articulate during the session.  The toy of choice?  The infamous NERF Gun...

Cade and Eric had a blast shooting together.

Cade decided to make a "birthday cake" with the NERF ammunition and everyone celebrated.

Cade was teaching me how to use the NERF Gun...and how to play his game!

So I have always wondered what in the world NERF means.  We all know what it is,,,but what in the world does NERF stand for?!  So I looked it up.  Here's some Jeopardy knowledge for you -- it stands for "Non-expanding Recreational Foam."  That definition made me think, and I believe NERF was made for sensory kiddos just like mine (ok, so probably not really, but just go with me here...).  You see, Sensory Processing Disorder is a lot like NERF.  It seems to be "non-expanding" - sensory kids have an extremely tough time expanding themselves in most situations.  "Recreational" -- well, everything about Cade is recreational...he never stops moving!  And then there's "foam."  When I think of foam I think of a soft cushiony place -- a place that is sometimes hard to bend but will always cushion your fall.  Deep down Cade is such a sweet soul.  He loves people, and even though many times he has a tough time showing it, when he does let you in to that part of him it is precious.  That part of him is a cushion...something inside of him can envelope you when you are able to tap into it.  And I do believe that one day, when we get his extreme sensory needs under control, he will be able to be such a great friend with a sympathetic heart -- a soft place to fall.

So I find it only fitting that today's success involved simply NERF guns.  And I know that in years to come I will be able to look back and rejoice in those little plastic play toys, knowing that they were such an integral part of my little boy's recovery.

Denver Diary Part Two: We have arrived!

We are officially back in Denver for round two of Cade's therapy at the STAR Center.  After the last week we have had I was very concerned about this one...Cade has had a very hard time regaining any impulse control.  After speaking with his doctor and finally determining the problem was an interaction of the two meds Cade was on, we have removed both of them in hopes of bringing him down from his "manic high" permanently.  She also gave us another medication specifically for meltdowns in hopes of getting us through the airports and helping Cade on the plane.

Cade was pretty unsettled from the start of our trip from Greenville, SC this time...he was pretty wild in the airport.  He quickly made friends with one of the airport security guards, never a good thing, after making a strong showing of trying to go unaccompanied up the escalator while we were attempting to get through security.  We made it to our gate and dispensed his "emergency meltdown meds," and sat back and waited for them to work.  Fortunately Eric had made arrangements with the airlines ahead of time so that they would allow us to board early, and we were able to get on the plane in Greenville before anyone else.

Well...we are still waiting for those "emergency meds" to work...they basically had no reaction and both plane trips were pretty tough.  Cade was completely resistant to the seat belt and sitting down in the seat was even a problem.  The poor lady who sat in front of him on the first flight, who thankfully was a very sweet grandmother, had to endure his feet randomly pushing on the back of her seat before I could grab them and redirect him.  The second flight was a bit better, but only after the first hour which he spent trying to get under the seat and sitting on the armrest against the window.  We discovered that even on a 3 1/2 hour flight they do not serve a snack (another pathetic attempt of the airlines to "save" money...), so we bought him an $8 snack box consisting of goldfish crackers, salami, pretzels, and a few other things and paid the $7 for him to watch DirecTV on the flight (ok, so I'm admitting that I let him watch "Spongebob" -- I was desperate, ok?!).  After consuming the food and watching for a while he fell sound asleep and continued to sleep until we were almost all of the way to Baggage Claim in the Denver airport.

It was almost 11:00 pm before we made it to get our rental car...another ridiculous event thanks to AVIS car rental and their two attendants with 25 people in line...but I am thrilled to report that we are in the Ron McD House again!!  Our friends met us when we arrived -- there is something to be said about being welcomed!  We were exhausted but just glad to finally be settled!


Cade is checking out the sites from the window of our rental car bus.



Today was our first day back at the STAR Center.  I was extremely wary...Cade has been so "off" for the last week I wasn't sure what to expect.  I met with Julianna prior to Cade seeing her for our first Parent Meeting and filled her in on all of the craziness that had occurred.  After our meeting Eric brought Cade to see Julianna for his therapy...and he was sound asleep from an apparent meltdown.  Cade is still having potty issues and there were problems at the park which ultimately led to them leaving to change Cade's clothes...hence the meltdown that led to complete shutdown and sleep.  Of course that added to our worry about how he would do with Julianna today.  This was how we started...

I left Cade, Eric, and Julianna to meet with our psychotherapist, fully expecting that we would be rescheduling his OT for another time.  I was so surprised and thrilled when Julianna met me in the hallway to let me know just how well Cade had done...what?! 

In case you missed it...Cade wakes up, looks up at Julianna, and says, "Did you miss me?"  So my heart melted just watching this! 

And in case there was ever any question about whether Cade loved his "J"...

An unsolicited hug is HUGE from Cade!!  I was so excited to see that he truly was so happy to see Julianna and had enough regulation at this point that he was able to relate to her, must less actually show her some affection. 

So tonight we are thanking God that whatever craziness that Cade has endured over the last many days that He chose today, on the day that we truly needed it, to begin to reverse the effects the meds have had on Cade.  And yet again God has shown Himself and given us a complete miracle. 

When we walked in to the Ron McD House room last night this is what we saw on our wall:

ENOUGH SAID!!

For Such a Time As This...

Tonight I have a heavy heart.  Not totally sure why, other than all of the craziness that's been going on over the last week.  But I think it has to do with school starting.  Everyone is getting ready to send their kids back...school supplies have been bought and lunches have been packed.  It's really an exciting time of year.  Kai is super excited to start back -- he has Ms. Teri and already loves her!  I'm praying that excitement will continue on through the first day when he actually has to go! 

But I am still so unsure about things with Cade this year...where he will go, and then what it will look like when he actually gets there.  We have been frantically trying to talk to people and make decisions.  Tomorrow morning we are going to orientation at the public school for PreK.  I just cannot get peace that public school is the best place for him right now.  Don't get me wrong, they can definitely provide the best accomodations for him...mostly because they have to.  But I guess I was just hoping, really thinking I would be pretty sure by now what was best.

I know many of you have prayed for us throughout our journey with Cade.  I reach out to you now and ask that you pray again...pray first of all that I have peace about where to send him this year.  And pray that wherever it is it will be the right fit for Cade...I am so worried that he will just be lost in the shufffle.  It was so hard to turn him over to his teacher at 18 months when we sent him 2 mornings each week.  It is so much harder now...I feel like I cannot tell them enough about what he needs, how he makes it through the day, what works best for him.

Last Thursday Cade and I went to the public school so he could get screened for PreK.  We walked into the classroom and I immediately saw Cade get totally overwhelmed -- his eyes scanned the room and he began to move from one spot to the other.  The screener just kept saying, "Over here to the table, Cade...you've got to come over here and sit down.  You can play with those things later, but I need you to come to the table."  All I could think was "Please just give him some time to acclimate to this new room and all of the 'busyness' in it..."  Sitting down at a table to do anything is super hard for Cade, especially in a classroom full of new things with someone he doesn't even know.

Please pray that his teacher just "gets" him -- that she will understand what makes him tick and just roll with it.  Please pray that the other kids get him, too...that they don't think he is just the "weird little boy" who chews and licks and runs all over, but that he really can be a great friend if you just give him a chance.  Please let there be little boys like Mason and Noah and Wiley, his best buddies from years past, who just took him where he was and loved him anyway.

I wish I could just protect him forever...just tuck him inside my wing and keep him safe from all that this great big world is going to throw at him.  But I know that really isn't best...I know that I must let him fly, even though his wing is broken and it takes him a little longer.  And I do know that many years from now we will look back on this year and just marvel at where he was and where God has brought him to. 

A song comes to my mind that I love called, "For Such a Time As This" by Wayne Watson.  It basically says that we were placed on the earth for such a time as this - whatever it is that is happening right now.  I truly believe, I know, that God has prepared a teacher and little friends just for Cade right now at this time in his life...for such a time as this.  I just need to take a deep breath and trust Him.  So I made this little video for him, for all of us...just so we can remember that no matter what is happening right now we are in the spot we need to be -- for such a time as this...

Make a video - it's fun, easy and free!
www.onetruemedia.com

It's been a hard days night...

** This is actually Saturday's post...I had some trouble with getting my pictures transferred over -- sorry it's a day late!  **

This week Eric and I feel like we've been working the midnight shift, except we haven't gotten the days off.  We have been in the throes of an extremely alarming, unexplainable, and just plain weird reaction that Cade has had to his new medication.  It has been unlike anything we have ever seen, and the doctors cannot seem to explain it, either...isn't that always helpful?!  I have already told you the basics...and we're mostly still living it.  He just completely lost all impulse control all week.  Thursday morning he was up at 4 am and then continued to be up for almost 24 hours into Friday morning.  This morning he went to sleep around 2 am and was back up at 7.  He seems to be doing better - he was in the bed by 11:30 tonight - which is a huge improvement!  They have told us that the meds should be completely out of his system by Monday.  Let's just pray that that's true.  And then we have to make decisions about what we are going to do as far as meds...we know he needs something for his impulse control, but we sure aren't putting him back on that!

On Friday while I took a 5 minute shower I came into our den to what can only be described as a disaster!  From what I can tell (and also by simply watching Cade throughout this crazy time when he is just plain manic), Cade just began to dump everything...no, I mean everything...he could get his hands on.  It was just as if his motor was completely on full speed and he just couldn't figure out what to do with himself.  Ok, so here is the sight I had as I turned the corner into the den...

Note the cat...wandering aimlessly around the room...I would love to know what he was thinking!

Now I'm quite sure that Kai just joined in on the "fun" -- but you can imagine my shock and horror when I saw this.  After picking my jaw up from the floor, and saying a prayer under my breath that I wouldn't just completely blow my top, we began cleaning up.  I use the word "we" loosely...both boys tried to help but honestly Cade was so out of sorts that he couldn't even focus on what we were doing.  After a short time it just became easier for me to clean it myself.  I did, however, promptly send these pictures to Eric on his cell phone -- yeah, he came home a short while later.

So of course all of this sleep deprivation has transferred to both Eric and I as well as Kai.  I'm sure it's hard to get any sleep when your big brother is running down the halls and crashing into the walls...we have all been a pretty tired bunch this week.  It has been so hard during all of this craziness not to be disheartened by our major setback.  We saw so much progress during our trip to Denver and for the first week we were home...it is so hard to sit back and watch Cade fall apart again just from this medication problem.  I am quite sure Satan is reared back in his chair sipping a drink and just watching what will happen next.  The discouragement is hard, especially when I am so sleep deprived!  But I know I must not let him win...God has done many miracles for my little boy over this summer and I simply cannot crumble under this pressure.  I am really hoping for a good night's sleep tonight, though...I think that will bring a whole new perspective in the morning!

In trying to keep us sane today I decided to do some activities with the boys.  Thank goodness for their daddy...he let me sleep in this morning!  So I was able to muster up enough energy to decorate cookies with them this afternoon.  They love this activity...especially Kai, who I swear is going to be a cook one day! 


Mixing icing colors



Kai put on as much as he could fit on his cookie!



This is the cookie Cade decorated...



and this is the cookie that he actually ate...he cannot stand the icing!



Kai is fussing about his messy hands...this cracks me up since he lives with messy hands!

Our Back to Denver countdown is now 3 days.  I still have a ton of packing to do...it seems a lot harder to get ready to head back out this time.  I think it's because we have so much happening here at home - and that Cade's school situation still isn't nailed down.  I'm praying we can get some of these loose ends tied up before we leave on Wednesday.

The good, the bad, and the ugly

It's been a week since I've blogged...we've just had so much happening here that I haven't had much time to sit down at the computer.  But this week has been full of so many emotions, events, and trials and successes.  We have truly seen the good, the bad, and the ugly!

After the rough road last week Cade seemed to really be holding his own.  We even went to Cracker Barrel as a family last Friday night...and we made it through the entire meal!  That doesn't happen with us very often.  Sometimes it just isn't worth going out because before the meal can end Cade has reached his max capacity with how much he can compose himself.  And add the bouncing two-year-old to the mix...yeah, we're not really a family that you want sitting next to you at a restaurant!  But both boys ate great and sat and waited when they were finished...it was fantastic!

We have had some trouble with Cade's new meds and getting them regulated...the first dosage was good but when we bumped him up for the second week he was literally falling asleep at lunch and sleeping on and off for the remainder of the afternoon.  After a few days of this we said enough, and decided to contact his doctor here to get a prescription for the lower dosage.  Long story short - this left him without any meds on Monday.  Now you would think that missing just one little pill wouldn't cause that much harm.  But, as we know, Cade isn't just any little 4-year-old and his body is definitely unique.  Basically as the day progressed Monday he went into what I can only describe as "manic" -- at 2 am he was literally jumping on the bed and rolling around.  We were up most of the night.  Tuesday wasn't much better, even after he had his meds...he had zero impulse control all day.  Wednesday he did begin to improve, but when Heather came for therapy he would not make eye contact, and after about 15 minutes he went into an all-out meltdown that ended with his body simply being unable to handle things - his body went into shut down mode and he fell sound asleep.  We have spoken to the doc at the STAR Center about the problem, and he told me today that he has never seen, heard, or even read about this happening...of course, right?!  We are keeping him on the lower dose but watching him very closely!

We have also been blessed beyond measure this week.  We are a living testimony to the "Fishes and Loaves" story from the Bible.  We have been praying for the remainder of the money we needed for our return trip to come in before we left.  God came through with another miracle -- he allowed the money from the VA that Eric has been waiting almost 4 years for to come in yesterday.  The back pay is significant, and after waiting so long we had almost given up hope of ever getting it - especially with the economy and the government spending issues.  The amount was more than we even thought it would be, and in what is apparently an unheard of event, the VA actually deposited the money into our bank account instantly!  I am still pretty much speechless and processing all that has happened...we went from no life savings to being able to make a significant dent in replenishing what the Denver trip has cost us. 

As we gear up for our return trip to Denver on Wednesday I want to take the time to thank each of you again who has been a part of the unbelievable miracles that we have experienced this summer.  When I sit back and try to take it all in I am overwhelmed by all of our blessings.  Each of you who donated to our cause, prayed with us, have been keeping up with us through this blog -- you are all truly a blessing to us.  And although you will probably never know just how much you mean to our family, we do pray that God pours rich blessings over you all as he has done with us.  It is overwhelming just how much love each of you has for our little boy.  I cannot wait to continue to share with you all about God's touch on Cade's life.

We will be leaving Charleston next Tuesday and heading to North Carolina to spend the night with my parents before we fly out of Greenville, SC on Wednesday evening.  Please pray for our trip -- Cade has not done well with the altitude changes and the meltdowns in the airport during our layovers are very concerning for us.  Eric has contacted a disabilities liaison with the airlines (I had no idea they even had those!), and we have made arrangements to pre-board as early as possible to hopefully offset the time he has to be waiting before we fly again.  We have a very short layover in Cleveland, Ohio going this time and will arrive around 8:00 pm Denver time on Wednesday.  We are praying for another stay in the Ron McD House this time -- we will not be able to call and check on that until Wednesday morning.

Also, Kai will be staying behind this time with my parents.  Eric and I need to be able to focus more on Cade's therapy on this trip, and without Kai we will both be able to attend each session.  Since this is a much shorter trip, basically a week and a half, we feel better about leaving him.  He will have a blast at Nana and Pappy's -- might better pray for them! 

"All I need to do is fall..."

Today I am feeling overwhelmed and underpaid.  I know I should feel like just being with my boys is payment enough, and most days it simply is.  But today has been one of those -- a day where I would have given anything to just roll over and pull the covers over my head so the day would just roll right on past.  I guess this day actually started around midnight last night...that was when Cade began knocking on the wall of his bedroom screaming, "Daddy, let me out!!"  It was just downhill from there...long story short I ended up with both boys in my bed by 4 am and Eric sleeping in Cade's bed.

I'm not sure if it was simply the lack of sleep, the overall exhaustion of the situation, or a combination of the two...but today was just one of those.  And try as I might I just couldn't shake it off today...Cade climbing into his dresser drawer to climb to the top of his closet -- yep, that ended with a destroyed dresser drawer.  Being on the phone and email with the school system -- yep, that ended with no new information.  Two, count um...TWO spilled boxes of NERDS candies all over the living room floor -- yep, that actually hasn't ended yet because I haven't had the chance or energy to clean them up!  A monster meltdown over a computer game -- yep, that ended just as it began, as a monster meltdown because Cade lacks the reasoning to determine that he must keep the computer mouse on the game to make the character move.  Shoot - just writing all about this makes me tired!

Today I have been burdened, almost suffocated, with discouragement.  It seems as though Satan only needs a teeny, tiny little window and he can just slide right in and beat me down.  Today I have been inundated with thoughts about what we can't do...I can't take the kids to the water park or to the beach with friends because I have no idea how Cade might react and I cannot handle him alone.  I can't visit the public library for a story time because I am quite sure we would never make it through without being way too disruptive.  I can't even manage to get us unpacked from our trip fully because I am spending my time fending off meltdowns, arguments, and working on intentional play with Cade.  And although it is just two weeks before a brand new school year will start, I can't buy my little boy school supplies from his list because we still have no idea where he will be placed.

Yes, today I have wallowed a bit in the discouragement of our situation...thrown quite a pity party at the fact that, yet again, we are dealing with these trials that I would much rather just forget about.  Yet throughout our journey so many have encouraged me with God's written word.  I continue to be amazed at how God can just drop a verse right smack dab in my lap.  Today that verse is Deuteronomy 31:8  "The Lord himself goes before you and will be with you; He will never leave you nor forsake you.  Do not be afraid, do not be discouraged."  The Message version says this: "God is striding ahead of you. He's right there with you. He won't let you down; he won't leave you. Don't be intimidated. Don't worry."

So even though today I feel as if I am definitely wearing way too many hats...there's absolutely no way I can be everything and everyone that it seems I must be right now...today God has already gone down this road for me.  Even though the discouragement is eating me up and often making it hard to even breathe...God has already gone through this day - and He is waiting on the other side with His arms open to just catch me...all I need to do is just fall...

I thank God for the small stuff!

Today was our first "real" day back at home...a day where Eric went to work and we were left with our usual summer schedule.  I was a bit anxious about it...Cade's sensory issues have worsened so much since last summer that I wasn't sure just how today would go.  Plus we're all still tired from all of the traveling and trying to deal with the time change - you wouldn't think 2 hours would be such a big deal!

I was excited, though, for Cade to get started working with Heather, our OT. This would be the first day since STAR that she has worked with him, and I was anxious to see just how we plan to carry out the STAR Center's plan here at home.  Things were great - he was super quiet at first and was especially cautious.  He waited to see just what she expected of him before he let his guard down a bit.  In unknown situations he tends to now be guarded and immediately seeks to take control of the situation.

Cade was very interested today in a bin of rice and beans that Heather brought.  He scooped them into bowls, dug out puzzle pieces -- it was very inviting for him.  He would not put his hands in many materials before, so I am happy to see that he is branching out a bit.  He even invited Heather to ride on his yellow power wheels truck -- and because that truck means so much to him I took that as a sure sign that he has made a friend!  I am excited to see what great things come from this relationship!

Tonight I had both boys myself, and I dreaded it.  It's never easy to get the bedtime routine down with 2 people, much less alone.  In fact as I'm writing this neither boy is asleep.  But at least they are in their rooms, and I consider that a success for now.  At bath time tonight, though, I decided to employ a strategy Julianna used at the STAR Center.  I found some bath foam that we had gotten for Cade a couple of years ago -- he wouldn't touch it then, so I had just packed it away.  Tonight I pulled it out and squirted it all over the bathtub walls.  Then Cade and Kai used watering cans to wash it off (ok, so Kai mostly just smeared it everywhere with his hands - I even dug some out of his ear when I dried him off!).  This was very similar to the activity Cade did with Julianna where she squirted foam onto the windows or surfaces in the Messy Room and he used a water bottle to wash it off. 

Cade loved this activity and both boys had a blast at bath time.  Cade used a ton of verbal language, and invited Kai to play with him.  Of course I have no video of this...I was just trying to stay dry.  But it was a success!  After bath Cade continued to include Kai in his play.  After a while I heard Cade say, "Here Kai, hold my hand," and in the kitchen they came wanting cheese for their snack.  I was so encouraged -- it is rare when Cade involves Kai appropriately in social situations.

So overall I would deem today a success!  I thank God for the little things, like my boys holding hands.  And I thank Him for bath foam.  And I know I should also be thanking Him for the fact that they are, I'm pretty sure, both in Cade's room right now getting along...but I would much rather they both be in the bed!