Here was my Autism Awareness Month Post of Day 6:

I was wondering when the emotional conversation I had with Townsend today would happen. It’s only been about a year and a half since he found out his brother had Autism but that was the last time he REALLY cried over it. But today….during a routine Bible lesson and corresponding writing assignment, some feelings came pouring out of him that resulted in a lot of tears. A whole lot. A long talk ensued about his sadness over the fact that he can’t fix his brother and how it wrecks him so to watch him struggle and hurt. I wondered when this conversation would happen. I let him get all his feelings out, hugging and loving on him, and validating those emotions in comparison to my own. When the time was right, I explained to him that getting our emotions out is super important. But that God doesn’t want us to dwell on our sadness but to channel that into something helpful. Thinking of ways to make Cannon’s life easier, to support him, and to educate others and advocate for him. To encourage empathy not sympathy. And to always remember that this life is but a blip in time in light of eternity. I cherish far more than I can explain….the relationship that my boys have. They RARELY fight and when they do…..it’s really just mild irritation. Townsend watches over him and tries to protect him like a big brother…..even though Cannon is 2 years older. They speak so kindly to each other and absolutely love being together. I always thought Townsend needed traditional school as an escape for a few hours a day…..to the rigors of our life. But, he has no desire and simply loves homeschool and being a helper/friend in every way he can. He will correct you quickly if you say that Roxy is Cannon’s best friend. He will tell you they both are! What a ridiculously, incredible blessing!!! This Autism life is not easy on siblings. But with God’s help, we can get through these emotional moments and keep on a positive road filled with unwavering hope, endless joy, and so very much love! I encourage all of my fellow Warrior families to rest in the promises of God and to allow Him to bring strength and peace into your life…..as only He can!

And of Day 7:

Today I want to share the story and mission of a man who has become a true hero of ours! One who took something difficult in his life and turned it into something beautiful for thousands! His name is Izzy Paskowitz and he is a former World Champion surfer. His son, Isaiah, has Autism. Please watch and be blessed! Then, check out the “Our Story” tab where you will find videos of Cannon participating in this event! There is NOTHING on this earth he loves more! NOTHING! Surfing is perfection to him! The calm beyond the breakers and then the rush of riding a crashing wave meets his sensory needs like no other! We are blessed beyond measure to have “Uncle Izzy” in our life!

Day 5…..

Sensory Overload (or Sensory Processing Disorder) affects AT LEAST 3/4 of person’s with Autism and is one of THE most critical elements to understand about the disorder. Every day, our bodies are bombarded with MILLIONS of sensations. Our brains have to efficiently process all of that information….organize and interpret it….to be able to respond and behave adaptively. What we get used to in our environment…..sights, sounds, smells, etc……they just can’t separate, process, accept, or dismiss. Overwhelm comes over their bodies when trying to react properly. It is physically painful. And causes meltdown or shutdown. In addition, you are either hypo or hyper sensitive to these stimuli. (For example: One might seek out touch by throwing his body into walls, furniture, etc. and another dislikes touch so much that they cannot handle even the idea of receiving a hug). There is a lot of variety especially when you remember that this is a spectrum disorder. Here is a video that helps one to understand what it’s like to enter a mall when you have SPD. Don’t turn down your volume! Experience it as they do! It will change the way you view those going through this in public.

And one more simulation…..

One final example……

Excerpt from Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm:

“Here’s why a simple trip to the grocery store may be agonizing for me.

My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.

And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.”

I pray these examples change the way you react or treat individuals with sensory issues going forward. Be kind. Be compassionate and empathetic. Be the CHANGE.

Continuing with my compiled Autism Awareness Month Posts……

Day 4…….I beg you to read this blog post I wrote nearly 6 years ago. There is so very much of my heart poured out into it. God used a situation that hurt my heart at first…..to encourage me and remind me of my blessings. Of the incredible strengths and amazing qualities of my child. And of the growth that was taking place within me…..because of him. I pray it touches and encourages you to reflect, savor, and thank God for all that makes your child….special. And if you know someone with Autism or any disability for that matter, I plead with you to see the unique abilities of that person….not the shortcomings! God bless!

Counting Our Blessings

In the month of April, I drew inspiration from friends who had done something similar and made it my mission to post an Autism Awareness post every day on my personal Facebook page.  I would love to share each and every one of those with you now!  We will do a few at a time.  Here goes…….

Day 2 – On this day it was World Autism Awareness Day! I shared that my family’s life has been completely redefined by the joy and heartache of Autism. By the challenge of meeting our sweet Cannon in his world and trying to draw him into ours. Every precious smile, few seconds of solid eye contact, and uninitiated hug is a treasure and a victory and motivates us to keep at it! The progress he has made from nonverbal, angry shell of his former self to today…..7 years later…..is remarkable. We are so proud of our beautiful boy! He may be different BUT he is NOT LESS! He may need more time, more patience, and more love to get through a simple outing, homeschool lesson, and/or an average day…..but he is worth every ounce of effort! With God’s help, we will continue the fight today, tomorrow, and always! On this special day, I would like to share with you the story of my family. (This was made years ago and needs so badly to be updated but you will get the gist.) God bless you all!

Day 3 –

So, I AM still alive! Yes, it’s true! My self proclaimed title as World’s Worst Blogger is still intact y’all! No surprises here! I’m so sorry! Life as an Autism navigating, meltdown managing, homeschool teaching, housecleaning, Service Dog walking/training, therapy coordinating, meal preparing, bill paying, Chait Button flushing, medicine pushing, laundry folding, Bible reading, Taekwondo and Baseball Mom is just crazy busy! And can leave me pretty darn depleted at the end of the best days. As well as, I never feel like I have a complete and final answer to report from Cannon’s medical perspective…..so I talk myself into waiting until I do……AND then that doesn’t happen. So, this blog sits dormant. Well, I am determined to get you up to date! So……

Apology aside…..let’s dive into what we were up to in the month of April. Autism Awareness Month!

Team Cannon was at it again! We were blessed to attend and participate in our local Autism Walk for yet another year! With some of the best people a family could be privileged to know. This event is always impressive, wonderfully supported by the community, and helps provide the funds for so very many meaningful programs and services. And look at the faces of these precious friends and family who joined us!!!! Having people in your life who give up part of their weekend to love on us and honor the life and daily struggle of our child is just so indescribably AMAZING! There just are not words to express how much it means Jim, Gail, Christy, Grant, Holdyn, Fletcher, Delaney, Paige, Jessica, Kurtis, Madisyn, Maksyn, Makenzie, Rob, Kimberly, Luke, Kyla, and Grandma! We love each of you so! I also want to thank Ruth, Karli, and Carey for helping the organization further their mission through their donations! Y’all are such incredible blessings in our lives! We adore you and from the bottom of our hearts appreciate it! Thank you! Thank you! Thank you! More to come soon! Enjoy these pics from our fantastic day!

       

 

      

 

      

 

       

 

      

 

      

 

     

 

     

 

      

 

Don’t you just love our Roxy girl?! Cannon was getting upset partway through the walk so she just got right in there with her boy to get the kissing, nuzzling, loving on, and comforting job done! I tried getting her out at a couple of points but she would just hop right back in with reckless abandon! It was hilarious! And so, so precious at the same time! This girl loves her job! And we are blessed every day by her diligence!

     

 

     

 

     

 

Yesterday, as I woke up to a kiddo with no congestion after a week of nothing but and one who was willing to tackle the difficult day that he knew laid before him…..I was struck by the impact of prayer. The priceless, selfless gift of prayer that so very many of you have completely blessed our families socks off with. As tears of thankfulness fall on my laptop…..I beg you to understand how very, very much we felt them. God bless you all! We love you so much!

Ok…..yesterday…deep breath…..here we go. I’m going to try to be brief. Ha!

The plan for yesterday was executed flawlessly minus the 3 extra hours we had to wait to get started. As soon as Cannon was down for the count, they got an I.V. and drew blood for ALL the labs. His G.I. doc’s nurse was there to grab them and take the vials directly to the lab. Then, the Interventional Radiologist came in to rid his body of the icky old Chait Button. (It has been leaking badly for the last year so they aren’t lasting as long. And it gets almost brown after beginning as white.) So, YAY for a fresh, new, perfectly placed button! He was then wheeled down to an OR where our new Pulmonologist performed the Bronchoscopy. We hadn’t met her before and were slightly apprehensive about beginning anew with someone…..especially being in the grave position we are. But, God could NOT have possibly answered our prayers more. She was BEYOND wonderful and the transition was so very seamless. She met with us for about 20 minutes beforehand and gave us lots of information, told us of things she was going to investigate, and goals she had for the procedure. Our minds were pretty blown by her awesomeness! Praise the Lord! Her part was to be followed by his G.I. doc performing the Upper and Lower Endoscopy. All went as well as could be expected in terms of execution. They even moved Mark and I to a private consult room instead of the general surgery waiting room. This was super helpful. We felt like high rollers.

Bronchoscopy

His vocal cords and larynx looked good. One suspicion she had prior was that they could possibly have become numb from prolonged reflux…..This could be causing them not to protect his lungs and respond the way they should thus allowing aspiration. There is a test that is better at determining this but she has a pretty good feeling that this is NOT happening. THANK GOD. There was also no edema in his lungs as had been 2 Bronchs ago. BUT….there ARE now nodules on the wall of his trachea, and on the right and left side of his lungs. There is chronic inflammation of his airway wall. Extensive damage from aspiration and reflux. She wants to get a CT scan in the near future to determine the full extent of the damage to his lungs. She thinks that it hasn’t gotten to his air sacs yet but that is a matter of time if we don’t act. She got a good sample of liquid and we will have to wait for the pathology report to know about that. This will show the rate of aspiration…..how much fat from his food is getting in. She was shaking her head when talking about the sample. She did not seem to have any hope that it would be a good result. Not at all.

Upper Endoscopy

There was no food in his stomach which is always good to see considering he has Gastroparesis (partial paralysis of the stomach). But his G.I. doctor saw evidence of extensive damage to his stomach still. There was bile. LOTS of it. In his stomach. Bile belongs in the small intestines. I have pictures but I will spare you. It’s gross. My poor buddy. Can you imagine what that feels like? His esophagus did not look good. Appeared very irritated. It bled a lot more than normal when they performed biopsies. And there was what appears to be yeast in his lower esophagus. Which means it is probably raging in his gut. We have started him on Diflucan every day for a week and he wants us to continue once a week for 3 months which may turn into always because he believes it is another chronic issue. Cannon already takes a med for chronic bacteria in his gut….this would be for chronic yeast. There was also still reflux visible even with 3 of the highest doses of reflux medication possible being consumed each day.

Lower Endoscopy

This is usually done as a formality with no issues. But not the case this go round. There was A LOT of mucus present. There was irritation around his rectum which we now have to give hydrocortisone suppositories nightly for a while. There was also hypervascularity throughout his colon and rectum. All are not normal.

When the Pulmonologist and G.I. doc were both in the consult room with us afterwards they began discussing where we are at. We ARE going to wait for the pathology reports and labs to come back so that we have the full picture. But they agree its time for drastic action. We can no longer allow his lungs to be damaged by the reflux. We have done all we can medicinally. It’s not working. My understanding is that there are 2 options. 1) A Nissen Fundoplication which is a method of taking the top of the stomach and literally wrapping it around itself, 360 degrees, to create only a very small opening. It will change the anatomy of his stomach forever as it is irreversable. The idea is that he could no longer reflux or throw up. 2) A Gastrojejunostomy (GJ) feeding tube. A feeding tube placed in the small intestines rather than the stomach. His stomach is partially paralyzed so the regular feeding tube into the stomach would not work. The draw back to this one is that he would need to be hooked up to it continuously rather than just at meal time. Because the small intestines aren’t set up to take on large feeds.

There are issues and questions we have about each and we will be addressing all of that soon. Just need to wait for pathology and labs to come back.

We definitely suspected there was more going on due to his increased pain but this was far more than was imagined. But does help us understand the doctor’s urgency.

My prayer requests are twofold.
1) That the pathology and lab reports would come back quickly.
2) For clarity in the coming days as we make this very big decision.

Friends….thank you for the love, prayers, and ALL the kind messages. 4 1/2 years ago, when Cannon had to get his Chait Button….we felt very similarly. And that hasn’t exactly made life easy but it has improved Cannon’s quality of life. That is our sole goal as we pursue the next step. God walked beside us, guided us, and sustained us during the year or so it took us to adjust to the Chait. We are confident that that will happen once again. Are there tears and disappointment?…..Sure! Absolutely! We have done everything in our power. Everything nutritionally, therapeutically, medicinally, and more. And I wish with all my heart we could spare him from this but I have to cling to what I know is so. It is well with my soul!!!!! Through tear streaked eyes I cry out….It is well with me. Love to all!

“I love the Lord, because he has heard my voice and my pleas for mercy. Because he inclined his ear to me, therefore I will call on him as long as I live.” Psalm 116:1-2

“I need batteries.”

This phrase escaped from the mouth of our Cannon for the first time about 3 months ago. A perfectly normal thing to say, right? So, we did what anyone would do when told this. We looked around and asked him what toy or device he could be talking about. Testing various ones that flash, move, and make noise. Nothing. We looked inside the house and out….in the car. Nothing. And he would just get really frustrated when pushed to identify the object so we often just dropped the subject and tried to redirect him to something else. A snack option, playing a game, going outside. Anything to keep him from continuously repeating this phrase. And I mean CONTINUOUSLY. (In the Autism world, this is called “scripting.”) It has come up in the most bizarre locations….church, public bathrooms, during therapy appointments, in the shower, and such. We felt like we tried our hardest to understand why he kept saying this but we simply could not. And just chalked it up to something he must have heard somewhere.

He didn’t stop saying it over the last 3 months. And the intensity with which he would speak it amped up as well. He would get into my face and press his face to mine telling me adamantly….”I NEED BATTERIES.” I was at a loss.

Recently, we traveled to Oregon to visit Mark’s family for the first time in 6 years. We had a lovely visit but with its usual set of complications. Getting proper food, meds, and wound care supplies for Cannon. Keeping him calm in the face of new situations, places, and people. Training Roxy to help with those things and following all service dog protocols. And just managing his pain while trying to be polite to our hosts and such.

But one day, we had a breakthrough/heart break. Cannon had struggled mightily throughout the trip and the last few months with much increased tummy pain. He has been begging in most cases to drink all his meals. We try to get him to eat at least one meal and one snack that is food but aren’t always succeeding. We are using medical food in powder form to make shakes for him super often. I honestly can’t remember the last time he had 2 food meals in a day.

One night, the pain was particularly bad. I tried everything. Medicated him. Put him in a warm shower (which he likes) to try and distract him. Massaged his tummy the way a therapist showed me. Read a favorite book, had Roxy give lots of cuddles and kisses, and sang favorite songs to him. Nothing was giving him any comfort or relief.

And then, 3 months of trying to tell us something finally came together.

He grabbed my face and screamed, “MY BODY ISN’T WORKING! I NEED BATTERIES!!!”

Well, there it was. I admit to being stung by the words and stunned at the same time. He made PERFECT SENSE. When a toy no longer works, you put batteries in it. So, why couldn’t he be the same way? AHHHHHH!!! My heart broke. Right in half. Because I had done all I could in terms of pain management. My eyes brimmed over with those hot, salty tears reserved for the really tough stuff. I held his hand, placed my other on his tummy, and prayed like I haven’t in a long time. With PLEADING, with every word I could muster, with fire in my soul…..I PRAYED! He just laid there. I thank God he slept that night. I begged for at the very least….that. I fell asleep with him on that little twin bed in my in-laws house. Clutching my sweet boy and continuing to pray with ferver. Feeling the closeness to both Cannon and my Father in Heaven as I poured out my heart.

Psalm 34:18 says, ”The Lord is near to the brokenhearted.” This verse could not have been more true that night.

Y’all! The moral of this story is twofold. 1) Chronic pain is nothing short of ROUGH! But, God hears our prayers. 2) Never, ever underestimate people with Autism. They ARE trying. There IS sense to what they say quite often. If you hang around long enough, dig deeper, and just love them……sometimes you’ll get a glimpse into those fascinating inner workings. The complex labyrinth that is the Autism mind. The pieces just have to come together.

Tomorrow (or today since I am posting this so late), Cannon will have an Upper and Lower Endoscopy with his G.I. doctor (labs and biopsies included), a Bronchoscopy with his new Pulmonologist, and a changing out of his Chait Button in Interventional Radiology. The scopes will give us a glimpse as to how his esophagus is faring against his raging reflux, whether or not Eosinophilic Esophagitis (asthma of the esophagus) is still present, and check out his stomach for any damage from the Gastroparesis. The Bronchoscopy will let us know how his lungs look and whether or not he is still aspirating fat from his food into his lungs. And if so….how badly. This last bit of info will determine if we continue discussing the possibility of a feeding tube or not. This is still VERY much a possibility! The Chait Button has to be removed and switched out with a new one every 9 months. It IS a bit tricky due to the spiral nature of the tube which is why it is done in Interventional Radiology as opposed to surgery. They can inject dye into the pathway to see where they are going with the tube instead of blindly winding the tube back in.

The biggest prayer request we have right now is this. Cannon has had a cold all week. It seemed to be going away and he sounded good this morning and tonight he is stuffing right back up. I am doing all I can with medicine, oils, liquids, humidifiers, and such but we are where we are. If it isn’t much improved by the morning, they will not put him under. And rescheduling a procedure that involves coordinating 3 doctors schedules is quite tricky.

We need the information that these procedures can bring and are praying with all our hearts that this particular day will give us more answers than questions. More solutions than disbelieving head shakes from the doctors. NO NEW DIAGNOSES!! And bring change that produces peace into our sweet Cannon’s body. A peace that would have him never requesting batteries for pain relief ever again!

But no matter what….we will continue to pray him through the tough moments, love him through the anger, snuggle him when he’s sad. Proclaiming from every mountaintop and valley of this journey….the words of this song…..

“I have this hope….in the depths of my soul. In the flood or the fire…..you’re with me and you won’t let go.”

“Trusting grace can be seen in both triumph and tragedy.”

It was such a simple moment. Yet it wasn’t.

Yesterday, was Mother’s Day. And during church, we had a precious few minutes. Ones that would go unnoticed to most…. but for us……it was a profound gift. A sight to remember. A moment of reflection and awe. We looked over at Cannon during worship time…. to find him COMPLETELY attentive and singing ALL the words to one song…..the one below. You have no idea.

Church can be such a struggle with our Cannon. His stomach is hurting and his response is to wiggle constantly (on good days) or thrash about with many sound effects (on the tougher ones). All the while attempting to find comfort. The service and sanctuary can overstimulate him…..with all the sights, sounds, smells, and such. And his frequent response is to meltdown, flap his arms wildly, kick the seats, yell out, hit himself in the head, and on and on. He talks normally…..having little concept of his volume and the need to be quiet….despite the fact that he has been in church all his life. He can be combative or reactive when corrected. He begs incessantly for his drawing board and/or the iPad. And I do cave….but NEVER until the sermon. Many of these experiences may sound familiar to anyone who has ever taken a child to church. But I assure you that Autism amplifies these scenarios.

When we arrive at our usual spot in the balcony…..his pattern is to immediately grab the hymnal. He turns each individual page until he has turned them all. This seems to help him acclimate.

Getting him to focus on just one element of the service and participating in that part has been a goal of mine for some time. Just following along from start to finish during the scripture reading. Helping me fill in the blanks on my sermon outline. Or even to take the outstretched hand of fellow church members without being prompted by us and to return their greetings with a response as well as a glance into their eyes. His lack of visual attention hampers these efforts and most especially…..the singing of the words on the screen. But not for about 4 minutes yesterday. Hallelujah!

We were standing. The song had just begun. Cannon was next to Mark..and I was holding the hand of my love. Roxy was sleeping at our feet. Townsend….off having fun at Kid’s Church. Mark squeezed my hand and I looked at him and smiled. But he motioned with his head towards Cannon. I looked. It was so beautiful. In that moment, even the gray color of his skin seemed to be gone and he appeared to have a healthy glow. He was smiling slightly. Standing up straight…not hunched like he can…due to tummy pain. Not stomping on his own foot over and over like he can. He was following the words….meticulously. Singing each word audibly and proudly. Not softly or just mouthing them. Truly singing each and every precious word. I was awestruck. To say the least. But then….something else got my attention. The words he was singing. Oh, those perfect, perfect words. Have a look…….

Never Once
By: Matt Redman

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Is Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

I was breathless. Tears rushed to and escaped from both of our eyes. There just aren’t enough ways to express the power of our sweet, war torn Cannon singing the words that are our heart’s exact feelings/experiences in regards to his developmental and medical journey. It was a heaven given Mother’s Day blessing!

The Timehop app does a great job of reminding me on a daily basis of the horrific first days after Cannon’s Autism diagnosis. The battle with the insurance company and the intense struggle to build a team of people and therapists around him. To guide and to teach him, thereafter. Of the years we could not figure out what was wrong with him medically. And those where we were CONSTANTLY in and out of the hospital. The days after his Chait Button surgery that were filled with anger, sadness, and the unknown. The new diagnoses that seem to slap us in the face on a fairly regular basis. It’s been a rock laden road. BUT…..those hard times help one to appreciate these types of moments where a small victory is really a HUGE victory!

I pray that right now….you will listen to this song….watch this video….and find something. Something that your heart might be searching for today. If you do not know the Lord, I pray that it will convince you once and for all to abandon all and follow Him. THE ONE who can provide you with all you need….no matter what. Your Savior. If you are struggling yourself, I pray that the words will convince you to send your burdens heavenward. He IS there…..ALWAYS. If you are a Believer….I pray it is a few joyous moments. Relishing the fact that you are never alone. Wherever you are in life….I pray it blesses your heart and strengthens your spirit. With all my heart….this is my prayer.

God bless you guys! And Happy Belated Mother’s Day to all the mammas!