Hi friends! There has been a lot going on with us lately. And it is now time to tell you about it. First, an update on our little man…..
The Cannon we have had with us since his 2 recent surgeries has not been the Cannon from just before the surgery or from before his regression. He has been a whole different kiddo. A much much sadder version. Not what we expected at all! We thought for sure…….once the button was “installed” and we were getting him cleaned out regularly…..he was going to feel fantastic. I mean, the week after each hospitalization was always so wonderful. He made more eye contact, had more interaction, and had super small but spontaneous conversations with us. Our hope was that that would be our new normal. Well unfortunately, that has not been the case at all. Our once loving little boy has been resistant to a lot of touch, angry, and sad. He now spends him days throwing things, grinding his teeth so hard it sounds like they are going to crack, screaming with every fiber of his being when he’s mad (which is quite often), and crying out of no where and for no apparent reason. And that is just the tip of the iceberg. “The flush,” the medical procedure that we perform on him each day, is not getting easier for him. Our end of things has stabilized. I have had to buck up and take the reins while Mark has been recovering from his knee surgery. And that has been good for me. Forcing me to face my fear of the new Chait Button and just get it done. For about a week after Mark’s surgery, we had an influx of AMAZING friends coming in to help us hold him so that I could complete the procedure. And now we are able to handle it on our own again. But Cannon….poor sweet Cannon…..he is just not accepting this. As soon as he sees me coming with the gloves on each morning, he screams “No tummy feel better!”, runs away, and fights. Once we get started, he kicks, screams, bites, thrashes, hits, and cries so hard. During today’s flush, he cried out, “If you’re sad and you know it…cry boo hoo.” 🙁 When we finish the procedure and run him back to the bathroom, he screams and cries even harder due to all the cramping. After about 15 minutes, this settles down and he relaxes into watching his video on the portable DVD player. (We have to keep him in there for about 45 minutes, so we use a movie to distract him and pass the time.) Anyhow, we feel that Cannon is depressed and struggling to cope with his new body. We really do. So……
We have decided to take some drastic measures to make our baby’s life better. It will be a two fold approach.
The first thing we will do, is scale back his ABA therapy. The behavior therapy he has been doing for 2 1/2 years which is done by trained therapists who are placing rigid demands on him that are followed by rewards. They collect data on his performance and are constantly revising their goals for and demands on him to keep him challenged. He has been having nothing but major tantrums whenever this is attempted since the surgery. So, we have decided that he will only work on “maintenance” skills until things are better. Skills he had already mastered prior to the surgery. Due to reasons beyond our control……we are down to just a few hours of this therapy a week. We feel this is the PERFECT time to implement a kind of therapy that I have been interested in for a long time. I even mentioned it in my New Year’s Resolution post. It is called the Sonrise Program. Here is the program history defined in their words…..
“The Son-Rise Program® innovated an educational treatment modality which included joining children instead of going against them. The program places parents as key teachers, therapists and directors of their own programs and utilizes the home as the most nurturing environment in which to help their children. The Son-Rise Program® dared to suggest that respect and deep caring would be the most important factor impacting a child’s motivation to learn, and from the beginning has made love and acceptance a meaningful part of every teaching process. Employing this attitude, we first seek to create bonding and a safe environment. We then apply sound, time-tested educational strategies pioneered by The Son-Rise Program®. These principles remain a cornerstone of our approach.”
I have always wanted a role in his therapy. It seemed crazy that outside from using some particular strategies at home……all of his 30 hours a week of therapy were being done by others. But ABA requires this. They believe if the parents do it……it can damage your relationship. So I LOVE that Sonrise is parent led! And the focus on love, respect, and helping them to gain a sense of self acceptance…..is exactly what he needs. The first thing we will do is begin the concept of “joining” him in his world. We will work in his new therapy room (pictures to come) where there are minimal distractions. And literally copy everything he does and join in with all the stims, scripts, and behaviors. If he repeats a phrase over and over. We will repeat that phrase over and over. If he rocks his body back and forth…..we will rock. If he hums for an hour…..we will hum right along with him. This will allow us to establish a stronger bond and give us a window into his world. Hopefully, allowing him to see that we accept his world. That he is safe and ok….just the way he is. Sonrise believes that slowly and carefully…..he will give us opportunities to insert pieces of ours. I will tell y’all more about this program later. You absolutely must hear the stories of the first couple of clients! Fascinating and amazing! Stay tuned!
The second major decision that we have made is that I will be homeschooling Cannon this year. We feel that there is no way that he could handle the demands that would be placed on him at school. Especially since he is going into Kindergarten this year and would need to follow a more structured agenda. It’s just not a fair expectation. We think sending him would be setting him up for failure. So, I am just about decided on which curriculum to order and then we will just figure it out. Homeschooling has been on my radar for a couple of months. I didn’t really think we would do it but I wasn’t ruling it out. As soon as the first surgery happened, I just wondered if it might be best. About 3 weeks ago, Mark and I had a serious talk about both ideas. He wasn’t opposed to the Sonrise Program but wasn’t sure that we could effectively implement it. Because of the intense time commitment. And he was very opposed to homeschooling. At the end of the conversation, I asked him a favor. I asked him to pray about it. And not take either off the table. He reluctantly agreed that that was a reasonable request. I was pretty into the idea of Sonrise and homeschooling at this point, and decided to pray for my husband. To make the right decision for our family. EITHER WAY! And 3 weeks later, one Sunday morning, when we had been struggling with Cannon all morning and realized that yet again…..there was no way we could take him to church……he looked at me with tears in his eyes and said, “How is he ever going to learn to cope?” I gave him a hug and he told me to start looking into homeschooling. And this week, we had another big talk and decided to go for broke with both ideas! I am grateful that my prayers were answered. Not that I got what I wanted. But that we both prayed separately about this and now feel totally confident that these programs are the right thing….right now for our child.
Therapy will be our #1 priority to start with. There is no way that we will have results in homeschool without some emotional stability. We aren’t worried about getting behind because Cannon is so darn smart academically. Remember that he has been reading since he was 22 months old so learning letter recognition and sounds as is typical in Kindergarten are the least of my worries. His pediatrician is fully supportive of these moves and said it wouldn’t even be terrible if we took a semester off. He will catch up. I know that there will be hard parts of homeschooling. The discipline of school is Cannon’s struggle and once things level out…..we will begin to tackle that element. With lots of prayers on my part for patience, perseverance, and endurance!
But for right now, we are just planning to completely change everything we are doing and throw the book at this! I realize that I may not sleep much this year but I could never live with myself if we didn’t do all we could for our baby. We pray that you all, our wonderful friends and family, will support us in this endeavor. We know it may not be the most accepted way of doing things but we are confident that it is the right move for our family…..right now! Much love!
Kimberly, we are praying for you guys. Homeschooling will be a challenge but you and Cannon will do great! Miss you guys.
Thanks so much for your support Sami! I am sure it is going to be tough. Hoping we can make such great progress in therapy that he will go along with me on the school stuff! We will see! Time will tell! But I really believe we can get it done! Miss y’all too! We have GOT to have that phone call! 🙂