We are officially at home in SC...for now. We headed out Saturday morning at 5 from the Ron McD House to the Denver Airport. We thought both boys would stay asleep, but they were raring to go once we got them up. We will definitely miss the cool mornings in Denver while we are home...it was so nice to wake up to 60 degrees!
The Denver Airport was beautiful...it looked like little adobes sitting on the top.
By the time we got to the airport, unloaded our rental car (which was a huge feat in itself), got all of our luggage and both boys (blankets, stuffed toys and all) into the shuttle bus, got to the ticket counter (of course because we had a changed ticket we couldn't check in at the curb), and got through security (where we had to make Cade put his blanket on the conveyor belt for the security check--it's getting a bit ridiculous what goes on there, but that's another story...) we were wiped out and ready to get on the plane and sit for a while. I got stuck sitting between both boys - Cade slept the entire way and Kai made himself comfortable with his legs stuck out in the middle of the aisle and whined about being in the seat belt.
Cade in the shuttle from the rental car agency to the airport...he does look chipper for 5:30 am, doesn't he?!
Our layover in Atlanta was another story. We are pretty sure that the altitude changes in the place greatly affect Cade - on our trip going to Denver he melted down in the Atlanta airport for our layover. We were able to get him calmed down and all was well before we boarded, though. This time Cade's meltdown happened shortly before boarding the plane. We rushed up to board with the early boarders - a very nice man who saw my desperate face allowed us to get in front of him - I quickly passed our boarding passes up, only to watch in what seemed like slow motion as the ticket agent could not get them to scan. As another ticket agent came up to help Cade's meltdown begin to reach monumental proportions...he was hanging upside down on Eric and screaming and crying. Then the supervisor comes up to let us know that we really need to "calm him down" before we get on the plane. Well...that's about all it took for me to begin my own meltdown -- as I ran after Cade, who had gotten away from Eric and was running, the entire crowd of other Charleston-bound passengers watched in "train wreck fashion" while our little family tried to get on the airplane.
At that moment God sent what must have been an angel to help us. A ticket agent came up, gave me a hug to say it would be fine, and then picked Cade up and walked us down the hallway to board the plane. He then led us to our seats, where he gently put Cade in, then made sure we were all settled before he left. He even came back before the plane left to make sure we were all ok. As the other passengers boarded and cautiously stared at us to see our outcome, I prayed silently for that man. If it hadn't been for him we might still be in Atlanta (well, not really, but it sure seemed like it!).
All of us were happy to be pulling into Charleston (until we stepped outside and got assaulted by the heat!). We were all in bed by early evening and slept in very late. Cade is still adjusting...he got up at 10:30, took a nap at 1:30, then fell asleep again by 7:00. But it is definitely so nice to be home, if only for a couple of weeks.
The boys checking out the Charleston view...we're glad to be home!
Tomorrow we begin therapy at home with our new OT Heather. She isn't really new - I have actually been talking to her throughout our time at the STAR Center. But she will be working with us here at home on a regular basis now. Please pray for a smooth transition for Cade tomorrow. We will be working on the model that the STAR Center set up for us, and especially beginning to address Cade's extreme oral-motor sensory needs. Also, please continue to pray about the school situation. I will be calling the coordinator for the Developmental Preschool in the county we are in tomorrow...hopefully we will be able to get Cade screened soon and have some definite answers on his placement.
Today was our last therapy session before we head home for our two-week hiatus. It's hard to believe we've been here over 3 weeks! Today was a great day at therapy...Cade found a new toy that sparked his interest and his ideation was excellent today. As he was running through the gym he stumbled across a box full of interesting and colorful things. Friends, my son has just been introduced to the Nerf Gun!!
Here Julianna is explaining to Cade how the gun works -- she was very specific with the rules...never point it at people, only objects (thanks for that one, Julianna!).
Ok, so Cade was super excited about this thing! We played for probably a half hour...Julianna was able to help him try all kinds of ways to play with the gun. She was even able to get him on the swing -- a huge feat because swinging is so good for regulating Cade, but he hasn't chosen to get on it as much as I would like. You can see he is organizing here, so the language drops off a bit:
Cade thought it was great when the "bullets" landed and stuck to the mirror or glass. Once he got started he played and played -- eventually they made it into a target game. You will see that each time Cade hits the mirror Julianna draws a circle around the target. This helped her to engage him -- we have found that ENGAGEMENT is really what Cade seeks from us. External rewards just don't work for him. The most success here has come from us being able to get in his world and engage him, to truly get him.
I could go on and on about this Nerf Gun game...it was so wonderful!! But I'll spare you that and move on. Cade also found a bin of sand, beans, and water today in the "Messy Room." It has been interesting to see that, as his regulation has increased a bit, he is choosing to play with "messy" things when he wouldn't before. Julianna is again engaging him here as they play with the "mud":
Today at the parent meeting I got our "marching orders" for our 2 weeks home. We are going to spend 20 minutes two times a day playing with Cade...not just any playing but in the form that we have done at the STAR Center. That's when the true neurological changes are taking place. Julianna has explained to us that it will take many times of experiencing a feeling (whether it be happiness, frustration, love, etc.) before Cade's brain will actually process that feeling naturally. For example, he will need to experience how to wait (the stop and go game, etc.) many times through play before his brain will "learn" what that means and begin to develop a concept of time. We are going to just engage Cade...give him language when we can but not inundate him with questions where he is expected to give an answer. Intentional Play -- we are retraining his brain to be able to handle typical neurological responses.
When we return we will be working with both Julianna and a psychologist at the STAR Center who is also DIR/Floortime trained...this is a therapy that we have researched and believe will be the best for Cade's progress. It is a therapy based on developing relationships - working on teaching him how to interact and play with others while also working on continuing his sensory development.
I must say that on our last night here for this trip I am surprisingly a little sad. It is amazing how quickly this place, though hard, has become our home. We have made such dear friends here that we hate to leave, but many will still be here when we return in 2 weeks. We all will forever be bonded by the experience that each one of us is having here at this time in our lives, and I have made some dear, lasting friends here.
Ok, I have to share some pictures of things I will miss from good old Aurora, CO:
Yes, folks...those are pink high heels...Kai absolutely loved these shoes and even wore them to the kitchen for meals.
The boys loved the playroom...we spent many hours here each day!
Cade loved the bikes...he and Kai rode many a mile over the last 3 1/2 weeks!
This was just so funny I couldn't resist...we laughed every time we passed it. What a fitting name for a funeral home!
This window in our room was Kai's favorite spot. From here he could see the playground, the parking lot, the sky (lots of airplanes!), and the highway. We could always find him perched here!
Ok, so I know this isn't a great picture. But you know no idea how hard I worked to get it! This is one of the adorable prairie dogs in the field in front of the Ron McD House. He sat perfectly still...until I moved about 2 inches and then he squeaked at me and took off down his hole!
Our journey is far from over. I will continue to chronicle our daily progress as we enter our "home time." We have so much work to do over the next two weeks - beginning a new structure at home, beginning therapy with our new OT Heather, and working to continue the progress we have made here. I am anxious about home and what that will bring...especially without the safety net of the STAR Center. We will be returning to Denver, and hopefully staying in the Ron McD House again, on August 17th for another two-week stay.
Please pray that Cade's new medication will be effective - he started it today to help with the impulsivity. Also, please pray that we can make a decision about a school placement for him next year. He has been attending a church preschool for the past 3 years, but we are unsure that this is the right placement for him now. This is especially hard for me - I just want to make sure we put him in the best possible location for his success and happiness. Since school, whether private or public, will begin while we are here the second time we mustmake a decision while we are home over the next two weeks. Please pray for clarity, answers, and that we move quickly on those answers.
Being here has been such an experience for our family...we have gained so much knowledge about Cade and what we can do as a family to help him. I know we will, we already have, experienced so many trials as we work so hard to make true neurological changes in Cade. I am reminded of Psalm 30:5: "...weeping may last through the night, but joy comes in the morning." I know we will experience that joy. And I cannot wait for the sunrise...
Today was Cade's next to last therapy session for this trip. If I thought all would go beautifully, I was wrong! It was a tough day...after a fairly typical start on the monkey bars he was very upset because he wanted to flip upside down without any support from us. It's not that he can't do it...he can pretty much climb and flip on just about anything with ease - one plus to his SPD. But because he had fallen in an earlier session Julianna let him know that it was unsafe to flip without help, so we would help hold him whenever he flipped on the monkey bars.. Cade takes many risks...his "danger factor" isn't what it should be for a typical 4-year-old (but of course more typical of that of a 4-year-old boy!), So we have been working on setting boundaries for him, especially in situations where he could injure himself.
Well...Cade certainly did not like the prospect of not being able to flip without someone's hands on him. His extreme tactile defensiveness screamed at us to back up, don't touch, move away...and that turned into an all out meltdown - complete with hitting, screaming, crying, and Cade retreating to a room where he wanted to be by himself. In a desperate moment I looked at Julianna and said, "What do we do here?!" She said we just have to co-regulate him -- he cannot regulate these emotions himself and the lack of sensory regulation is actually what caused this meltdown in the first place -- so we worked to give him the language about what and how he was feeling, and tried to give him options for allowing himself to take a break calmly. After a timer, offering a tent, moving away from him - probably at least 20-25 minutes of meltdown madness - Cade began to de-escalate and redirect himself to a pirate game he found in the room.
Happily I report that the session ended up being an excellent one. He and Julianna played a guessing game with pirate swords that helped to redirect Cade and calm him:
Julianna is hiding swords and Cade is guessing which color is in each hand.
And now Cade is taking a turn hiding.
The remainder of the session consisted of hiding in the Rainbow Room, the room full of huge pieces of Lycra where Cade can climb and climb forever -- we played Hide and Seek for several turns there...and then Julianna and I being chased out of the gym by Cade the Shark. He came out pretty regulated and was able to have a good car ride home - this has not always been the case here as I have endured many car rides after therapy spent screaming and crying.
On a note completely unrelated to therapy...when we came into the STAR Center today I was speaking with the receptionist to get some appointments nailed down for our return trip. Julianna came out and we were talking to make sure we had everything ready to go for our next two weeks, when we heard some hysterical laughter coming from the book corner. Now this is usually pretty alarming to me...don't get me wrong, I love to hear my little boy laugh. But it usually means something is going on that probably shouldn't, so you can imagine how I flipped around to see what was happening. Cade and some other kids had found the book, "Once Upon a Potty" -- I'll let the rest speak for itself...
This evening the local chapter of Harley riders came to the Ron McD House and brought us pizza for supper. It was a lot of fun - the house gathered outside on the patio for a picnic. The boys had a great time...I mean, pizza and Harleys??!! Of course they pigged out, especially Kai, and then asked if they could look at the motorcycles.
Kai chowed down on pizza...and begged several desserts when all was said and done!
Cade pretty much filled up on pizza and carrots...a winning combination!
Kai with one of his many desserts...
Eating is exhausting!
Checking out the Harleys...
We were fine after we kept the kids from pushing the buttons...I hate to think what this poor man endured when he actually started up his bike!
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...
(**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 unbelievablesocial 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.
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.
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...
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 waywe 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.
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??!!
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.
