Denver Diary Day 21: Our Motto

It is Wednesday night...we have been here three weeks.  It seems like we have been here forever...it is almost as if we have morphed into a new way of life.  I think living in this special needs world does that to us -- it is almost as if we have created a new reality, if only for a short time.  It is like time has stopped...time has stopped while we help our little boy, then time will restart again.  I'm not sure whether I want that time to restart, even as much as I am ready to go home.  But I know it will restart, and I must prepare myself for life back in our own reality of home.

Have you ever been somewhere or doing something, and you think it seems as if you were dreaming?  A large part of this trip has seemed that way to me.  The part where I was told Cade's regulation was very much worse than we ever thought.  The part where I cried while my little boy sobbed against my shoulder and begged me to go home.  The part where I watched his eyes light up as he flew down the zip line for the first time.  The part where he handed Julianna a prize, the therapist that was so tough for him at first - he was now showing her that she was indeed his friend.  And so many other parts in between...

On Monday night we received a blanket from the Ron McD House...another blessing from the many volunteers here.  I picked this particular blanket because of it's bright colors - I thought the boys would love it.  But when I turned it over I saw the sweetest blessing of all.  Inscribed on the back, written in a child's handwriting...

"Live well, laugh often and love much."  Yep, that pretty much says it all.  Like most families of a special needs child I don't think we live well  nearly enough...Cade's needs often come before the rest of us purely out of necessity.  Kai rarely gets to pick which cup, popsicle, sticker - the list goes on and on - that he wants because it really isn't a big deal to him...but it is a huge deal to Cade, so he usually chooses first.  Eric and I rarely have time to even have a conversation unless it is well before bedtime...it takes Cade so long to get to bed that it needs to be a team effort.  I rarely take time for myself because I'm just plain worn out by the time evening gets here (I'll have you know that I just ordered Jillian Michaels' "30 Day Shred" DVD...yep, probably won't be able to move , but at least I'll be taking time for myself!).

And we definitely don't laugh nearly as often as we should.  Sometimes things become so overwhelming that it is too hard to laugh...can you imagine that?  Too hard to laugh??!!  We have got to get better at that, we need to get better at that...for regardless of how it all seems right now - right now in the brief moment of Cade's life - it won't always be this way.  And I want the boys to have fond memories of us just laughing...

I will say I hope that we do love much.  It is often hard to love what is happening...when Cade is off the deep end and we are just trying to pull him back on board...it seems hard to love.  But we do love Cade and Kai...and it is for that reason, and that reason alone, that we are taking this journey as a family.  Because we must go through all of this together in order to come out together on the other end.

So, no matter how often I have seen it, or how cheesy it might sound -- this will be our new family motto.  We vow to live well, laugh often and love much.  And thanks to both the blessings and trials that we have already experienced, and will surely continue to experience through this journey called Sensory Processing Disorder, I think we will succeed in making our motto true for us...and hopefully pave the way for our little boys to believe it in their hearts and live it with us...

Denver Diary Day 20: Progress

(**Sorry this post is so late...I had major video issues last night and today!)
This has been such a long journey, and I know we have so much further to go.  We have learned so much about Cade's SPD -- what sets him off, how he reacts, what we should do, etc.  But it has been painstakingly slow watching, and waiting, for things to change for Cade.  Looking back we know there have been small changes all along.  But today at therapy I realized just how far we've come in our 19 days here.

I have talked before about the nonverbal communication that Julianna has been having with Cade.  He has often reverted to pretending to be an animal or make "noises" but we never realized that it was because he was having trouble thinking and doing at the same time.  Julianna explained to me that Jean Ayres, the occupational therapist that coined SPD in the 1970's, found that most SPD kids have that problem -- they are unable to think and do at the same time. 

I have been amazed at how much motor planning and ideation Julianna has been able to get from Cade when he isn't trying to carry on a conversation.  Bless his heart...he has two very verbal parents!!  But we are trying hard not to inundate him with language in hopes that he will better be able to develop these skills as his brain develops. 

This video shows a wonderful example of this nonverbal communication and how Cade responds.  He wanted to draw on the windows with window markers...he and Julianna are having a "discussion" without words to remind him of the rules.  He went on to complete all of the windows in the gym:

Cade has been eyeing a game in one of the rooms at the STAR Center.  It is a form of "Whack a Mole" but it is a tower.  Today Cade decided to try it.  The game required him to hit both hard and more softly in order to light up all of the numbers on the tower.  This is tough for Cade -- he doesn't actually feel how soft and hard he is putting pressure on something (we break lots of pencils and crayons!).  I was so proud of him with this game...he worked so hard to manipulate the pressure to light all of them up!  And he did this without major frustration, which was another huge goal for him!  He continued to return to this game throughout he session. 

Cade also came up with a completely new activity today.  In all of our days at the STAR Center he has never used the zip line tower as a castle, although this is a perfectly sensible activity.  Today he thought of that idea himself, and decided to elicit a sword fight.  I was so happy when he stopped his game to help find a sword for Julianna...this shows an unbelievable social awareness that he hasn't had before! 

The two of them had a great time sword-fighting, and I even joined the game.  Unfortunately my cell phone battery died and I didn't get as much video footage as I would have liked.  But after this game there was more interaction where he brought Julianna in to his game.  This is huge -- we have been working on getting him to bring us in to what he is thinking and feeling....this is big step in doing that!

The end of the session today was a rocky one -- Cade did not want to leave.  He was able to get it together, though.  When Kristen, our social worker here, helped him transition to getting his shoes on and offered him two prizes from a little bag, Cade chose a play phone.  But the best thing?!  He chose another play phone for his second prize and gave it to Julianna.  I think he wanted her to know that he was still her friend, even though he had a little trouble transitioning to get ready to go home.  I am so happy that he has developed the trust in her as his friend...through all of our time here this is perhaps the biggest deal for me.  It is important to us that he be able to be successful in social situations, and reaching out to Julianna was a huge step in the right direction!

As our time for our first trip draws to an end I am feeling both apprehensive and blessed.  We have learned so much about Cade and have some real strategies on how to help him.  But I know when we go home for our two weeks that there will be some real struggles.  I feel like the parents on the show "Supernanny" when Ms. Jo leaves them on their own for two weeks -- we are worried about what might come without our "safety net" of Julianna.  But thankfully we have a wonderful new OT at home waiting for us, and we are armed with a boatload of knowledge that we didn't have before.  We are on the road to making Cade better...and all great things come with a price.

Denver Diary Day 19: A mouse and brotherly fun

Today was Cade's second day off.  He was definitely much more awake today...I'm so glad they give him 2 days off to recover from his long week.  Today for lunch we broke down and finally went to visit the mouse...yep, Chuck E. Cheese!!  We figured that hopefully if we went for lunch it wouldn't be too crowded...and trust me, that's the only time we want to do Chuck E. Cheese!!

Cade was so excited he could hardly stand it.  I have no idea why he loves this place so much.  For some reason, even though it's a sensory kid's nightmare, he loves to hang out here.  I think the excitement about the place is a much bigger deal to him than actually going, but he always loves it when we go.  And of course Kai loves it, too, which makes it worth going every now and then.  For Eric and I it just equals expensive pizza, headaches, and dragging kids out before they want to go.  Hence the reason we don't go that often!

This was Cade's favorite - a driving game, of course!



The boys driving the bus




Leaving with our prizes...Kai chose candy and Cade chose a coloring book and a whoopie cushion (trust me, he doesn't know the real use of it!)

The boys had a wonderful time, as always...and of course neither of them wanted to leave.  But we finally got everyone back in the car and headed back to the Ron McD House where at least Kai took a nap.  The boys were then treated to packages from home...they were so excited!!  They had so much fun opening everything.  It gets boring for them around here sometimes (ok, for all of us!) and it was nice for them to get mail.

 

Both boys were in a great mood yesterday and showed a bit of brotherly love by playing with each other without actually fighting.  They were so funny playing...and Cade decided to teach Kai how to do "Ring Around the Rosie."  Except Cade has his own version...

We have started to see a difference in the way Cade plays with others.  His social skills have been greatly affected by his SPD...he is in "Cade mode" all of the time and cannot typically allow others to have ideas that he can follow.  We have noticed in playing with the kids here that he seems a lot less frustrated with them in play.  This is a huge deal for us because we know his social skills are so important in his development, especially now that he is getting older.

We have also been working a lot on transferring what he is learning at therapy to "home" (although that isn't as easy not actually being at home!).  We are specifically working on teaching him how to respond to the way he is feeling, especially when he is mad or frustrated.  His typical answer is to act out by hitting or name-calling...Julianna has told us that he acts out because he does not know how to handle what his body is feeling sensory-wise.  I can only imagine how hard it must be to deal with the onslaught of everything coming into your brain being offensive to your body.  It is nice to be able to better understand this through Julianna...us having an understanding is the only way we can help him.

Denver Diary Day 18: Butterflies and late-night pretzels

Cade slept until noon today.  I'm not sure that he has ever slept that long...I think he was just completely worn out from the week of tough therapy.  It was funny...I told him we were going somewhere special today - his first question?  "Is it Chuck E. Cheese?!"  When I told him no, that it would be too crowded today his response was, "But everyone is probably still sleeping!"  Yep, he has no concept of time and just how long he slept!

Although he was actually really sleepy all day (except tonight, which I'll talk about later), we decided to head to the Butterfly Pavilion that we had seen last weekend on our way to the Rocky Mtn. National Park.  I had looked it up online and it looked to be small and manageable for us right now, and it said we would be up close and personal to tons of butterflies and other creepy crawlies.  And the fact that it was only about a half hour away helped!

 On the way we stopped for lunch at Subway.  Kai engulfed his sub...no surprise there!  Cade pretty much lounged the whole time trying not to fall asleep.  I have no idea what makes him have these days where it seems he could just sleep all day...I know the therapy here is hard and I'm assuming between that and the meds he is on that he just has days that make him crash.

Daddy and Cade found the two most comfortable chairs in the place...



and Cade made himself at home!

Kai had no problem at lunch..eating is one of his favorite activities!

We made it to the Butterfly Pavilion.  Although we were a little worried about how Cade would do, especially since he was so super tired, it was really a great day.  There was a room that had many different kinds of tarantulas...Cade even got to hold one named "Rosie."  Kai called everything in the room a ladybug.,..he had a blast peeking into all of the exhibits and trying to find whatever it was that was supposed to be inside.

There really were some cool bugs here...

 


Kai loved the giant praying mantis!



There was a scorpion in this box that Kai could see when he
turned on the light...we had to peel him away from it!


Kai looking for "ladybugs"

Cade is holding "Rosie" -- this is a memory-maker!

Tonight Eric tried to get work done, which left me in the room with both boys.  Hence the reason this post is so super late...it is 12:37 am right now and Cade is still trying to get to sleep.  He and I shared a late-night pretzel snack a couple of hours ago...I guess that didn't help the getting to sleep factor so much.  Hopefully tomorrow he will be back on more of a schedule...I think it's taking quite a toll on his little body here.  Not sure what our plans are for his second day off, but hopefully we can include some outside activity to burn off some energy.  That is if we ever get to sleep tonight...I was just rocking with Cade and he informed me that we should "stay right here all the way until morning..."  I think he is a bit on sensory overload tonight - we cannot get past a wall that's "dark," a nose that's "hurting," and jumping at every little noise that we hear.  Oh...it's gonna be a l-o-n-g night...


Kai had a great time on the zipline.

Both boys had to climb on the big bugs! 

We didn't get to touch any butterflies but we sure got very close...

Kai with his "leaf bugs" - they are sounds asleep with him tonight...





Denver Diary Day 17: We say goodbye, we say hello!

Today was a bit of a lazy morning.  I said goodbye to my friend Sandy and her daughter Anna...they are headed back to Montana.  The boys and I enjoyed the nice cool weather this morning outside on the playground...it didn't take long to warm up but the cool mornings are wonderful!

Tonight we visited with some new friends that Eric and the boys met at the local park yesterday.  Jeff and Aurora are in the Army and are stationed here...Eric was thrilled to have some time for "man talk" and we loved visiting with them.  Their 2 boys and our 2 boys had a blast together -- Aurora and I said we don't know what we would do with 4 boys so close in age!  We had a wonderful meal and it was so nice being able to get out and visit.  Both boys were pretty well pooped out by the time we got home...which is a nice bonus to the evening!

Today I was able to meet with Julianna for our 3rd parent meeting.  I had a list of questions, and I'm sure she was thrilled  when she saw my notebook.  But yet again she was able to give us so much insight about Cade.  One of the things we talked a lot about was when Cade stops talking during therapy...that has been concerning to me considering he is really a very verbal child with a pretty high IQ.  Today in therapy Cade went nonverbal - he pretended to be a cat - and instead of trying to elicit talking Julianna and Eric just went along with his cat game.  Cade loved this, and it was amazing to me watching it back on video at just how much two-way conversation, albeit nonverbal, was happening during that play time.  Since we weren't inundating him with words he was able to focus more on his motor planning...he didn't have to form words or even think about what he was going to say.  He simply was able to play...and it was really awesome to see.

Here is an example of what happens with just too much language...Cade cannot process his "plan."  You will see Julianna try to help him with his motor planning here:

After over 2 weeks here I have a such a mixed bag of thoughts and emotions.  I am so impressed and thrilled at how much we have learned here.  There is no way we could have helped Cade without the unbelievable knowledge we have gained here.  We have gained an understanding of Cade and his development that we would never have gotten anywhere else.  As his parents we are so far from where we were when we came here...we are in tune to the reasons that Cade behaves the way he does and have already been working on so many things to help us be better responders to him as he struggles.

It has also been so hard as we have seen deficits in Cade that we did not even realize were there.  I feel as if, although we have made so much progress here, we were in such a different place when we arrived that we even thought we were.  So it has made it seem as if our progress has not been as quick as I had hoped.  I think I have been struggling with that so much over the past few days...the fact that things seem so much "worse" than I even thought they were.  I have asked myself over and over how I possibly could have missed it...how I could have been right smack dab in the middle of this journey with my little boy and actually had no idea what he was feeling, or what was truly happening in his little body.

God helped to put that into perspective for me today.  A family here that we have spoken to several times has a 10-year-old girl with a variety of developmental disorders.  Today when we were outside she had complete meltdown...running and hitting.  It all was so familiar it was almost hard for me to watch.  I actually felt her parents' heart as it was happening...it has happened to me so many times.  When she was able to get some control I talked to her dad a bit.  He told me that she does have some high-functioning autism and pervasive developmental disorders, but that the doctors were not able to tell them exactly what her issues were.  He told me that even as a baby she struggled...she cried constantly and had sensory issues at a young age.

That could have been us...would definitely have been us...had we not intervened right now.  And although I am struggling so much watching my little boy struggle so much, at least we do know what is happening with him and are able to get the right help.  And yes, this journey will be a long one.  And I know this journey will never, ever be fast enough for me.  But I know in my heart that we made the right move at the right time...before this journey careens completely out of control before our eyes.

Tomorrow begins our two days off.  I have plans to see more of the Denver...I have been researching a bit and talking with the locals about things to do in the area.  And although there are a ton of activities here, I think I have picked the few that we will actually be able to handle.  So hopefully we'll be able to visit a butterfly emporium here that I have been told has a creepy crawly room...yep, pretty much right down our alley.  And hopefully I can enjoy the journey for our last week here...because in just one week we lose our tour guide and are left to move on alone. 

There have been so many experiences that we have had here...so many friends to which we have said both hello and goodbye.  But we have also said hello and goodbye to so many other things here...goodbye to so many expectations that were unrealistic or hello to many expectations that we didn't believe were actually possible.  Goodbye to things we were trying that weren't working...hello to a different kind of interaction with our little boy - one that might seem uncomfortable but one that works for Cade.  And before this journey ends I can only imagine just how many hellos and goodbyes will have crossed our path.  So I will alter my armor and continue pressing on.  Because I know that when we reach our journey's end it will have been made all the more sweet by our willingness to say hello and goodbye, even though it's sometimes through barred teeth and dragging feet.

Thanks, Dad, for adapting to what I need!

Denver Diary Day 16: Delta comes through, tie-dyed shirts, and Mom's night out!

Happy Friday!  Actually, around here is it just another day.  I'm pretty desperate for a change...the days seem to run together.  Today Cade had therapy 2 times...Julianna wants to try doubling up some to work on his motor planning skills.  We weren't sure how he would do...OT typically wears him slap out.  His morning therapy was great...Eric was able to take him and reported that he had several ideas on his own.  Although his afternoon therapy wasn't as successful, he was able to come through a meltdown and leave on a positive note.

I spoke to Julianna a bit today about my frustration...I feel like we're stuck in a time warp and things aren't really moving forward.  We will meet tomorrow and I know we will be able to talk more about this, but she did point out a very interesting point.  When we arrived and Cade began therapy his play was almost entirely centered around objects,  He would collect things, play with them...he would allow others to join but he definitely revolved his play completely around things.  Over the last week or so his play has began to be centred around people,  Light bulb...yep, she's right!  He does try to involve us in what he is doing so much more now than he ever did before.  This is a major breakthrough...it is so important for him to allow us into his world so that we can use the relationships to help him adapt.  Don't know how I missed it...guess I'm just a little too close.  Thank you, God, for Julianna...she has been such the right fit for us!

I'm happy to report that after Eric's 7 am Denver Airport trip armed with a very well-written letter from the STAR Center, a wonderful supervisor booked us on a flight for next Saturday...without ANY additional fees!!  What a relief and such an answer to prayer!  Thank you all so much for praying for this need!  The supervisor even wrote his name down and told Eric that if any more changes needed to be made just to give him a call and he would help us.  Thanks, God, for that icing on the cake!

The Senior Girl Scouts from the area came today to make us lunch.  After lunch they stayed and made tie-dyed t-shirts with the kids.  My boys had a blast!  I loved it because it was not the typically mess--they let the kids draw on their shirts with Sharpie permanent marker, then they dropped drops of alcohol on the marker.  And there you have it...a tie-dyed shirt!  I will definitely be using this trick in the future.

Not sure what this strange face is about...but he did enjoy making his shirt!

Kai as especially proud of his!

Today has been a rough day.  One of our cats at home has been a little "sick" for a while...a long story for another time.  While we have been in Denver his problem has worsened...the dear friend taking care of our house and animals has been keeping us posted.  Today we were forced to have him put to sleep.  This is a cat that Eric and I rescued from a shopping mall while we were living in Virginia when he was only 8 weeks old.  He has always been a literal scaredy cat...I was probably the only one he truly trusted.  I am so sad and will miss him terribly.  It's especially hard since we're here and can really do nothing.  Isn't it funny how things are always so much worse when we are far from home?!

Thankfully I was able to go out tonight with my dear friend Sandy.  She and I met here on the second day we arrived, and we became fast friends.  She and her daughter are leaving tomorrow morning...and although I am so sad to see her go I am happy that they will be able to go home.  She treated me to a fabulous pedicure at the mall and we enjoyed walking around and having dinner.  I needed a night out more than I can say...it was so nice to only have to worry about myself while we were there!  I am so thankful that Sandy and I crossed paths, and I'm sure we will be life-long friends, bonded by such an unusual and difficult experience for both of us.  I continue to be amazed at the people that God has chosen to bless us during this time.

While I was taking a break at the mall Eric took the boys to the park.  While he was there he met a couple with 2 little boys close to the same age as Cade and Kai.  They have invited us to supper (not sure that they call it that in Colorado!) at their house tomorrow night.  This always makes me a little nervous, especially with people that we don't know.  Cade has a tough time in these situations...I worry so much about offending people with his behavior or having to leave early.  Please pray that Cade is able to have a nice evening and that we are able to make good decisions to keep him regulated while we are there.  We know the boys will have a blast, and we could use the adult conversation!

On an ending note...somebody from the South has apparently been thinking we were a little homesick and prayed that God would help with that -- the temperature here today was 99 degrees!!!  Now granted, without the humidity it was still so much better than at home.  But give me a break...almost 100 in Colorado??!!

Denver Diary Day 15: Family Date Night

We have now been in our "temporary home" for 15 days.  Tonight we decided to head out of the Ron McD House and get some sort of entertainment...all of us are getting a little bored and stir-crazy.  We went to restaurant.com, the wonderful website where you can get discount gift certificates for restaurants, and found a gift certificate for a local Japanese Steakhouse here (we got the certificate for $3.50 for $25 worth of food...can't beat that, right?!).  The boys love those places and usually they are food and entertainment all rolled into one.

Tonight didn't disappoint.  This was a local restaurant instead of a chain, and the food was spectacular!!  The cook, though, was the real story.  He was perhaps the most manic, hyperactive, "all over the place" cook I have ever seen...and it was hilarious!!  I wish the short video I took did him justice...but it's the hilarious quick things he said under his breath that made him so funny.  Here you can see him creating a fire at the table...he looks like he is in "fast-forward" mode.  If you listen really closely you can hear him singing part of the "Hell's Kitchen" theme song...

We sat with a family that lives here locally, and they let us know about a wonderful park here in the area.  We have been in dire need of a park with swings of some sort.  This is very important for Cade -- he actually needs  swings to be a part of his "sensory diet" each day.  We were excited to learn that not only does this park have swings, but it also has an indoor pool that we can visit in the afternoons.

Utah Park did not disappoint.  The kids had a ball  climbing the enormous climbing wall, playing in the sand pit, riding the swings, and sliding down the enormous slides.  Of course when we arrived I discovered I did not have a working camera...that's the story of my life.  But it was great...and we are so glad to find a sensory-friendly park so close that we can go to let the kids unwind a bit.

After the park we pushed our luck and took the boys to get ice cream at the local Dairy Queen.  Both of them enjoyed an Oreo Blizzard...this was about more than Cade could take and he spent most of his time walking around the sidewalk and checking out the scenery while Eric, Kai, and I ate our ice cream.  But we so needed this night away ...it was great to head out like a "normal" family, if only for a little while.

Eric is headed to the Denver Airport tomorrow morning early to plead our case regarding our airline tickets.  We were able to get a wonderful letter from the STAR Center, and we are so hoping that we are able to get our tickets changed with a very minimal additional cost to us.  Please be praying in the morning that we get the one ticket agent that will have some compassion about our situation -- we know

God has put so many people in our path on this trip, and we need tomorrow morning to be another one of those occasions.

Sandy, one of the dear friends we have met here, and her daughter Anna are leaving tomorrow.  I have so enjoyed getting to know her, and I will miss her not being here.  It is amazing how quickly friendships form here...we begin to count on each other as we go through the tough times here.  Please pray for Anna...she suffers from extreme anxiety that has caused her to be unable to go to school or leave the house.  Hopefully she has learned enough coping mechanisms while being here to get her over this hump in her young life (she is 15), and she will be able to start school this fall with her friends. 

Cade has 2 therapy sessions tomorrow...this is the first day he has had 2 sessions in the same day.  Please pray that this will be effective and that he will be able to handle both sessions.  The progress is so slow and we want him to get every benefit that he can here.  If he is able to do well tomorrow Julianna will be doubling up some of his therapy sessions next week.  She feels this will help his motor planning and ideation skills, both of which he has such a deficit in.