Denver Diary: Our journey is nearing an end...

We have now been in Denver for 33 days and our journey is nearing an end.  We fly out very early Sunday morning.  As we are wrapping things up here I cannot help but feel a bit overwhelmed...overwhelmed by all that we have experienced through this huge undertaking.  It is hard for me to believe that after so much work, planning, anticipation, and yes - worry - that we are getting ready to head home for good.

We have experienced so many miracles...it is hard to comprehend all that God has brought us to see through bringing Cade here.  His therapy, though so super hard, has been such an unbelievable blessing.  We all have been stretched further than we thought possible, and we have made it through to the other side being so much stronger.  We have learned so much about ourselves here, so much about being Cade's parents, that it is simply impossible to put into words.

We will miss the STAR Center and all it has to offer...it made Cade's work so much easier!

Most importantly, we are bringing back a very different little boy than we left with in early July.  Cade has made remarkable gains here...he has learned coping strategies, how to communicate, ways to more appropriately play...he has worked so hard here without him even knowing it.  We have watched him go from a little boy who was frustrated almost all of the time to one that can bring himself out of his frustration with coping skills.  We have watched him blossom here...my heart is full from all that Cade has gotten from our time at the STAR Center.

Here Cade is bringing himself out of a meltdown...he is "retreating" to a place where he can have his "own space" -- much better than yelling and screaming!!

And we have learned how to play with Cade.  That may sound simply ridiculous...but playing with Cade needs to be so intentional because we are striving to retrain his brain.  And this has not been an easy job!  But we now know what avenues are the most important to take with him.  We have learned what we need to work hard to strive for, and what is simply not as important in his development.  I have watched Eric bark like a dog and "fetch" more times than I can count - and all without embarrassment, disdain, or regret.  I have watched Cade create new ideas with much more complication than I ever thought he would be able to do...and I have watched him be so excited about doing it.

Cade discovered some pom-poms...and introduced "Pom-Pom Fighting!"

J taught Cade how to play the game "Guess Who?"  I'm thinking it's going to be one of his favorites!

The next American Idol??

We will miss Julianna so much...she has been such a calm ray of light in the middle of this crazy, and sometimes seemingly relentless, process.  I thank God that he placed her right in the middle of Cade's life when he needed her the most.  I have watched him grow to truly love her, and I know he is going to forever hold her someplace deep in his little heart.  And I know that whenever we are struggling I can always pull from her advice that she has so richly given us, and hopefully be able to dig deep enough to find what I need.

Cade and "J" as he so affectionately calls her.

Having fun in the "Rainbow Room"

Denver has been remarkable.  We have grown so much, seen so much, struggled so much, and celebrated so much.  You all know that I am truly a Southern girl at heart, but I will always have such a special feeling for this place.  In the midst of all of its beauty and grandeur it surely holds some secret power that God placed right in the middle of the Rocky Mountains...I'm pretty sure that it will always draw me back for another, perhaps more relaxing, visit.

The mountain view...

Red Rocks Amphitheatre

But for now we are headed back to reality.  A different reality. We are headed back to the world where we must make everything flow smoothly, make sense of it as much as we can, and just keep on plugging along.  For as far as we have come here, we still have so far to go on our journey with Sensory Processing Disorder, Autism, ADHD, OCD, and many other labels that have found their way into our lives over the past year.  We are headed head first into a brand new school year -- the first as a "special needs family."  I will be entrusting my little boy to the hands of the public school PreK this year.  And I will be hopeful that he will encounter the love and support he needs to get his school experience off to a good start. 

But we are headed back with such a remarkable support system in place.  For in this journey, too, we have learned to lean on friends and family when the going gets tough  We have learned to not only accept blessings, but to truly rejoice when they come our way.  God has put so many in our path...those that helped us when our journey was just beginning and those that continue to be prayer warriors for us all along the way.  And those who have become true lasting friends, forever friends, bonded simply by our experience of trying to help our babies.  And God gave us Heather, our OT at home, who already has become such an important person to our family...I hope she is ready to "take the wheel" when we return!  To all, I could never say thank you enough for being a part of such a remarkable time in our lives...we will never forget the sacrifices and prayers you have given up for our little boy.

So goodbye, Denver.  Thank you for the special, magical time you have given my family here.  Thank you for the laughter, the memories, and the healing.  And most of all, thank you for helping to change the life of my little boy for the better.  You will forever be in my heart...

Cade and Eric at the Red Rocks Amphitheatre...Cade's energy never waivers!

Cade insisted that I take his picture with every purple trash can in Red Rocks park!!

Cade gave me a heart attack...his "no fear policy" is stressful sometimes!

Farewell Rocky Mountains...hope to see you again someday!

Denver Diary Day 30: The Squeaky Wheel

Cade is always the squeaky wheel...the one who everyone turns around and looks at and probably wonders about...the one who gets advice - sometimes out loud and sometimes just through a look.  He is the one who is considered demanding and hard...the one who sometimes struggles to keep a game going when the rules are not really what he wants or expects...the one who is sometimes hard to figure out.

It's hard to always be the squeaky wheel.  The squeaky wheel is the first to get noticed when he is climbing - on anything.  The squeaky wheel is the first to get the second look - the first to be called down and the last to be given the benefit of the doubt. The squeaky wheel is the first to be left behind the play huddle...and the first to be underestimated based solely on appearances.

Yes, he is the squeaky wheel.  But squeaky wheels aren't always bad.  Squeaky wheels still work hard to turn even though there is something causing them to squeak.  They are always heard and cause people to turn and look, only to show their stuff when the time is right.  Squeaky wheels are drawn to all other wheels, whether those wheels are squeaky or not, and still love to be around them.  And even the squeaky wheel is required in order for the vehicle to do it's job.

In the moments when I seek to make my little boy be somebody he's just not, I try to remember that he is actually exactly who God created him to be...and what he is doing is actually what God expected him to do.  He is fulfilling the mission on this earth just as God has planned for him at this moment in his life.  And my job as his mom is just to help the squeaky wheel remain on course, and maybe oil him a little now and then with love and support...and just to let God continue to use him for blessings.

Day 29: The dirty deed

**Disclaimer:  If you work, or have ever worked, as a shoe salesperson I hope you don't find this offensive.  For us moms out there...well, this is just the truth! :) **

Today was another day off from OT, and Cade woke up bouncing off the walls.  So since Eric had to get some work done I decided that he and I would take a field trip to the Super Target, and then go shoe shopping while we were there.  Why?  Probably because I temporarily lost my mind, but off we went anyway bouncing along the way!

Cade sitting on the huge "Target Ball"

Cade did great at Target -- he had a gift card from Nana and Pappy and was super excited to spend it!  He definitely has his father's "money burns a whole in my pocket" demeanor...there's very little saving from this kid!  But I always love it when he goes with his own money...and he is certainly much pickier then.  Today he settled on a kids' bowling set.  I was actually really happy with his choice...there is a mini bowling ball and weighted little pins that are big enough to actually let us play a "real" game. 

Cade proudly displaying his Bowling Set!

Then we went shoe shopping.  Now let me just say that this is about the least amount of fun I can have as Cade's mom.  First of all, shoe stores are NOT sensory-friendly.  In fact, I don't even think they are kid-friendly.  There are racks of shoes teetering on tiny little shelves, just waiting for little hands to swoop by and scoop them all to the floor.  And then there's those standing displays - you know the ones - little pieces of plastic that display the latest and greatest (and most expensive) shoes in the store...just screaming to a sensory kiddo like Cade, "Come on, buddy, climb on me!  See how high you can get!  Hurry on over!!"   I also adore how there's always only one employee working in the store when you go in to actually buy something - when you're just window-shopping they jump on you like white on rice.  But when you actually need their help it is all they can do to stop counting the endless pairs of shoes that for some reason they have piled a mile high onto the counter where you are supposed to pay and pry themselves back to the kids section, which, by the way, is ALWAYS in the back of the store.  I personally think the kids section of a shoe store should have a whole separate entrance and be completely encased with walls and doors where nobody but an adult can open it to get out.  And making the walls padded might not be such a bad idea...but I digress...

So we go into the shoe store, Cade proudly carrying two of his new bowling pins.  He really wanted to take in the ball, too, but I talked him out of that one, envisioning the nightmare that would be left behind in his wake.  So I say to the one man working in the entire store, "Can you help me?  I need to have my son's foot measured so I can make sure I buy the right size?"  To which Mr. Shoe Man slowly says something to the effect of "what I'd rather do is just stand here behind all of these shoe boxes and you can just take care of it yourself...the measuring things are in the back of the store in the kids section..."  I rest my case.  But he did assure me he would be there shortly to help me...we WERE the only customers in the entire store, so I'm not really sure what could have been more important than us at that moment, but whatever.  I herded Cade to the back corner.

Now it was around this time that I realized that allowing him to bring in the bowling pins was probably a really bad idea.  I was initially thinking they were perfect...they would keep his hands occupied and what harm could he do without the actual ball?  Mistake...apparently I had made a momentary lapse of "Sensory Mom Judgement" -- I KNOW Cade can find almost anything to do with anything.  So as I herded him to the back of the store he proceeds to use his bowling pins as drum sticks, and he plays a "tune" on every shelf on the way back.  Of course I know that this lovely symphony my son is creating will only delay any help from Mr. Shoe Man even more.  So I decide to take matters in my own hands.

I immediately rush around to find one of those dumb little measuring things for kids' feet.  Does anyone else think these things are ridiculous?!  I mean, not only do you have to make sure that your kid has his foot all the way back, but then you have to make sure that it's on the right side.  And then you have to attempt to decipher the zillions of numbers on the thing.  I mean, we live in America last time I checked...I have no idea why there are french/german/who knows what measurements on the measuring thingy.  And I am doing all of this, mind you, while trying to get my sensory-craving 4-year-old to just stand up tall and be still...while he is practically laying on the seat where I am trying to measure him, all the while continuing his "drumfest."

About this time lovely Mr. Shoe Man walks up.  I am practically laying in the floor trying to get Cade's foot exactly where it is supposed to be and see the tiny little numbers, while trying to figure out which ones are actual American measurements, all without my glasses mind you.  So surely Mr. Shoe Man will take over, right?  Wrong!  He simply stands over me and says, "You might want to turn him around to face you...it makes the numbers much easier to see."  What I say back to him, but only in my head, is, "You might want to stoop down here and do your JOB and measure my son's foot, because the longer we stay in your store the faster and louder this drumming symphony is gonna get!"  But instead I say nothing...I just turn Cade around and line his foot up. 

This brings me to the next ridiculous part of the foot measuring thingy.  Why, when your kid's foot lines up with the 10 1/2 line does the shoe man then tell you, "Well, it's close to the 11 so you'll probably need to get either an 11 1/2 or a 12."  WHAT?!  So basically I could have just blindfolded myself and pulled out a box and been almost as successful and the craziness of the last 10 minutes trying to use this dumb thing.  All I can say is it obviously wasn't invented by a MOM!!

It is at this point that I remember that Cade is wearing Crocs, and of course we are here to buy tennis shoes, which means I need socks.  Helpful Mr. Shoe Man says, "Do you have socks?"  to which I say, "No, but I guess I'll be buying some," to which he says, "You can use one of these," and hands me one of those ridiculous footie things.  I'm thinking, yeah right...I can see me getting that on Cade's foot.  I laugh to myself and say, "I probably should just buy socks because of the thickness" and head over to find the cheapest pack I can find.  Then I set about the task of helping Cade pick out some shoes.

Like most kids Cade is very visual, which means he picks out shoes based solely on the colors.  Usually this is a pain, but this time I find a pair of Nike's with a green stripe - one of Cade's favorite colors - and begin to scan the shelves for the right size...whatever that is.  I pull out an 11 1/2 and again herd Cade back to the seat to try them on.  By this time he has made it to the middle of the shoe store with his bowling pin serenade and isn't really that interested in stopping to try on shoes.  I finally get him back and pull the socks apart to get them on.  I am wrestling the socks onto his foot while he is reared back talking on the "phone" -- because of course I pick a seat for him that has an advertisement on the back with a picture of a giant phone.  He is telling who knows who all about the fact that he is shoe shopping and putting on socks and cannot talk right now.  I'm pulling out these gigantic shoes that literally look like skies on my little boy, realizing that an 11 1/2 is WAY too big.  I tell Cade to stay put (yeah, right!) and rush back to the shelf to get a smaller size (imagine that...he actually wears the size that the foot thingy measured instead of two sizes larger).  Of course when I return Cade in his sock feet are no longer there...I quickly find him on the next aisle and scoop him back up on the seat.

We finally try on the shoes and get them all tied up, and Cade is doing his "test run" from one side of the store to the other.  And about this time Eric calls.  He sweetly tells me that he sure wishes he could have gone (no duh...I sure wish that, too!), and that he really needs shoes.  So now, mostly because the store has a buy one get one half off thing going on, I am set upon the task of getting a new pair of shoes for Eric.  Cade, who has insisted that because these new shoes make him run really fast and even let him balance on one foot that he must wear them out, is very close to using up whatever is left of his shopping patience.  So we gather up the bowling pins/drum sticks, the socks and the package (half of which is stuck on Cade's face), and head over to the men's section.  I quickly found a pair that I thought Eric would like, knowing that he could return them later if he didn't, and headed up to pay and get out of here.

Now Mr. Shoe Man surely must have known that I was in a hurry.  But when I walked to the counter he meandered around those infamous mile-high shoe boxes...they were piled so deep I couldn't even get my purchases onto the counter.  He then tells me that Cade has to take off his shoes because he has to check the size.  WHAT?!  Man, I just spent a zillion minutes checking the size...why in the world would I buy two shoes with two different sizes.  But he must check, so I coax Cade to sit down while I remove his shoes to be checked.  Now Cade wasn't happy about this...he wanted to wear his shoes out, and taking them off wasn't on his radar screen.  He literally lays down on the floor in front of the counter while I plop down on the floor beside him.  I get them off and practically fling them at Mr. Shoe Man, who casually says, "Yep, they're both size 11," and hands them back.  I then wrestle them back on Cade's feet and double-tie them (because for some reason whoever makes shoes believes that kids' shoes must have 4 feet of laces...), then hand him my phone to watch a show on and send him to sit by the window. 

i am ready...I have my money out (which, by the way is a ton  now that Cade is in a bigger size...I will never understand why shoes are so expensive!) and am trying to wait patiently as Mr. Shoe Man painstakingly slowly completes my purchase.  I call to Cade, who by the time Mr. Shoe Man is finished is already doing another "test run" on his new shoes in the back of the store, then help him retrace his steps to find our bowling pins which have been traded in for a million other "finds" inside of the shoe store.  Finally we make it out!

One day I will find another way to complete this monstrous task before school starts every year (if anyone wants to volunteer feel free!).  But for now I am happy to say that the dirty deed is DONE for this year.  Now please, Lord, keep his foot the same size for a while, at least until May!

And here they are...

Denver Diary Days 27 and 28: What is normal?

So over the past few days as things have started to get better with Cade, Eric and I have been saying that our days seem "almost normal."  So that got me to thinking...what is normal, anyway?!  I mean, we all think we have our own normal...we go through our days doing what we think we should, usually keeping things basically the same.  And we figure out what we need to do to keep ourselves and our families "normal."

Normal for us isn't always the same.  I mean, I think we consider normal being that we will need to keep things minimally chaotic and make sure we have plenty of time for transitions.  And we know that we'll need to get plenty of activities in for Cade's sensory diet in order to make him more settled.  And we figure that we'll probably field a couple of meltdowns throughout the day, and try to redirect.  And certainly I will be digging Kai out of something he isn't supposed to be in to!

But although we can usually count on all of these things, I just wonder what we really consider to be normal.  Life certainly isn't what we expected, that's for sure.  And although we grieve for the life that we thought we would have - being the parents we expected to be - it seems that we have just settled in for the long haul.  And it's a haul that we've become familiar with, one that we've even embraced (at least most of the time!).  And even though it isn't always easy there are certainly always rewarding parts to it all. 

So today normal for us was a grouchy little 4-year-old, fielding a few meltdowns this morning, a calm evening with a sleeping child, and then feeding that same child a pb&j at midnight!  And I'm sure tomorrow there will be a new normal.  But I think that's not really a bad thing.  I think having our normal be different keeps us on our toes.  And it certainly keeps us always looking up -- which certainly cannot be a bad thing...

This is how Cade spent the entire afternoon...his "nap" turned into all-out exhaustion and he slept until just before midnight, when he woke up starving!  And now we're trying to get him back to bed...oh, the joys!!

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!