Hello my friends:) No we didn’t fall off the face of the earth and we are still in full swing of the Brain Balance program. Continuing to make strides and progress. May has just been a month that has taken us and me personally through more than I had planned and it took my away from my blogging. So I am super excited to be able to start it up again and here we go!!!
Two major changes for our Dalton within the last 2 weeks. His medication has been decreased by 10mg. Which is HUGE!! We felt that the weight loss coupled with the changes/progress that he had been displaying warranted reaching out to his pediatrician to discuss this option. The pediatrician did agree to decrease his dosage and he has already shown positive improvement from this change. This has also made me question whether or not we should being looking for a new pediatrician for him though…with an outlook from one of the doctors in the practice of “there is nothing that Brain Balance is going to do to effect his medicine or help him”…I’m not so sure that he is a good fit for our team any longer. I will wait to speak with his regular pediatrician before making that final determination. They have been in our lives for 19 years…will be hard to let go and move on because they have been fantastic doctors…we don’t have to agree on everything and we already disagree about some things. And that is OK:) But if there is going to be more problems on the horizon and too much resistance and not enough open mindedness…you gotta do what you gotta do for your kids.
The other major milestone is that Dalton made it through the night in regular underwear and NO ACCIDENTS!!! First….Time….EVER!!!! I almost did backflips down the hallway when I saw his smiling face this morning 🙂 Super proud of you buddy!! You are our rockstar!!!!
Tonight we have his 3 month evaluation. Excited to see what his measurable progress is and see how far he has come since the program beginning!! Stay tuned!!
Good morning folks! So…I mentioned in my blog yesterday that Dalton always seems to show more real progress in the mornings after he is well rested and before his meds. Well this morning was another stellar example of this!!
When going in to wake Dalton for school this morning…he was already awake. But he wasn’t JUST awake…he was awake, laying in his bed reading his books. When asked what he was doing he said, “I woke up and I just want to read my books.” These words have NEVER come out of Dalton’s mouth. N.E.V.E.R. Did I mention NEVER?!?!? Not in 9 years…NEVER!!!! He then hurriedly got ready for school and put his shoes and socks on correctly the first time in less than 30 seconds (the shoes and socks took less than 30 seconds…not the whole process…LOL). His motivation was getting back to his books before his transport arrived to take him to school. Now…reading has always been a struggle for him. Mostly because he lacks the attention and focus to keep his eyes on the proper line in the books and if he looks away from the book even for a split second he is completely lost…these are skills that we are working on in the Brain Balance program. His exercises at home and at center are working his eye tracking abilities and are helping tremendously! We also noticed that Dalton is able to read his school lunch menu. He showed us this ability just 2 days ago when we were looking at lunch choices for the week and he read what the main entree choices were for each day. We had no idea that he was actually able to read at the advanced level that he was performing at! Not because we are inattentive parents…but because Dalton has been unable to show us what he is capable of.
Consider this…a child that lives locked inside his body. He can’t command his body consciously or unconsciously to perform and behave in the way that he wants. He lives unaware of his space and existence in our neurotypical dimension. He doesn’t feel his body the way that others do. He can’t track very well with his eyes (huge deficiencies in 3D vision) and therefore is nonathletic, clumsy and is constantly tripping over and walking into/over items in his path (and an occasional doorway). His eyes can’t track and focus on single images/words for long enough periods of time to complete simple tasks that we do every day and take for granted. His olfactory senses peak off the charts when new smells and foods are introduced which cause huge sensitivities to new foods and new environments. Sounds are his enemy. Especially if there is no order to it. He clings to music and melodies because there is consistency and structure to each musical movement. This is one of the best mechanisms that he learns through. The world of imagination and make believe is his reality. He is a master of that realm. He can shut off sounds, talking and chaos around him and simply “be” in that world he has created. It is a reality that he has 100% control over and therefore he prefers to live in that isolated world than in our real world. A real world that doesn’t understand him, doesn’t openly accept him and would rather he be kept away with other kids like him.
That is a snapshot my Dalton…and of many other children/adults that are affected by Autism Spectrum Disorders and ADHD/ADD. That is what he is working SO HARD to break out of and what WE and our Brain Balance team are working to break him out of. That is why he is my hero. This is his story. I know that many people get tired of seeing my posts on Facebook, Twitter that illustrate his “tiny progress” when they have no idea what a HUGE step that is for him. To those of you that feel that way…please don’t feel obligated to read my blog. I am not writing it for you. I am writing it for myself as a record of our journey…and it gives me hope and strength moving forward when I need a little extra encouragement after he has had an exceptionally challenging period of regression. And I am writing it for other parents like me that face the same daily challenges that I face. That are looking for help that they may not know is out there and available to them. That may be considering researching this program a bit more but want to hear about an individual journey going through the program instead of just a testimonial letter or video documenting their successes after program completion. There are parents that travel HOURS…one way…three times a week to get their children to our Brain Balance center in Edwardsville. It isn’t just working for us…it is working for SO MANY other children/teens/adults…
Another bit of progress to mention…Dalton has never been a child to not have ALL of the buttons on his shirt buttoned. Even if that top button is going to cut the circulation off at the neck….he will button that top button. That all stems from his sensory issues. He also prefers to wear shoes that are too small for him so they feel tighter on his feel. Helps him feel his feet better. But I digress…after putting his shirt on this morning he started to button his 3 collar buttons and I said (like I do EVERY SINGLE TIME he wears a shirt with buttons), “Hey buddy, why don’t you leave the top button unbuttoned? Your shirt looks really cool that way. It doesn’t need to be buttoned.” He said, “It does? Huh. Ok. I will leave it unbuttoned.” And…he…DID!! He left it that way when he left for school. Now…that isn’t to say that he won’t come home with it buttoned because he had the need to feel that security during the day…but this morning he was comfortable enough and in touch with himself/his body enough to leave it that way! Way to go buddy!!!
Can I get an amen?!?! We have successfully made it through 5 weeks of the Brain Balance program! Some days it feels like we have been doing this for years…but the rewards are SO fulfilling!!!
Example…yesterday morning we (Jase and I) overslept because our alarms didn’t go off. We woke up at 7:20am…and Dalton’s transport arrives at 7:10am. #parentingfail SO…I immediately jump out of bed and rush upstairs panicked of course at the morning that I just KNOW is going to be ahead of me. But instead of finding Dalton still snoozing away in his bed…he is standing on the front porch in a t-shirt (with no bottoms…which is hilarious in itself)…munching on a banana. He looks at me and says, “Good morning mom. You overslept. And Miss Peggy is already here waiting for me.” I said, “I know buddy, I’m so sorry.” He then said, “It’s ok. I already got my clothes out of my room and is it ok if I eat breakfast at school today? I won’t have time to eat because I have to go now.” INTERNAL MONOLOGUE: Seriously?!?! Is this my child?!?! Did some alien invasion happen during the night that I was unaware of??? Because this appears to be a pod person. This CANNOT be happening right now. Am I awake? This has got to be a dream…
He then happily finished getting dressed and bounced out the door with his daddy and had no issues getting into the transport either. Jasen came back inside and I looked at him and there was absolute, complete disbelief on both of our faces. Wow….reflecting on it today I have no words to adequately explain how I felt in that moment and have since then.
This morning (we did NOT oversleep) Dalton did his whole morning routine and then came and sat outside on the back porch with me where I was having my morning coffee. He sat down in the chair next to me and just sat and smiled and looked at the sky and the trees and took some deep breaths and said, “Today is going to be a great day! What’s the name of that tree? It’s really old so it should have a name, don’t you think mom?” LOL!!! He is SUCH a funny guy!
Jase and I have realized that Dalton reflects much of his progress and successions (more often) in the mornings before he has his medication and when he is well rested. While we aren’t comfortable taking him off his meds yet (nor would we without the guidance of his pediatrician)…this does show us once again that real change is happening inside Dalton. Physically, mentally and emotionally.
Allow me to introduce you all to Iris! Iris is the latest addition to our family. She helps Dalton with his eye exercises. Yes she is a pen and yes she is a watermelon wearing a neon green feather boa…AND our course her name is a BAAAAD pun…but you gotta get the humor in when you can…
These eye exercises are now being done daily as Dalton’s next step in his Brain Balance journey. And they are WICKED hard for him…his eye tracking abilities are extremely deficient and Iris helps him get through the exercises with a bit less of a struggle as we work towards improving his abilities in this area.