We got home from Brain Balance this evening, I started dinner, and Marcos came in to tell me he had just received a call from a friend that had extra tickets to go to Frightmares and wanted to know if he and the boys would like to go. Dylan had been invited by another friend to go to a corn maze so he wasn't around. I knew Dylan would LOVE it and would be disappointed he had missed it, but I wasn't sure how Preston would do. Should they go? I figured worst case, Marcos could take him on simple rides or just walk around the park with him. They ate quickly, threw on a hoodie and were off on their adventure.
Marcos called me a half hour later to tell me they had just ridden the white roller coaster...and Preston liked it. What? Are you serious? There are no words to describe how shocked - and thrilled - I was at that moment. No words. Like butterflies in my stomach, nervous but giddy, type of thrilled. A pinch me I must be dreaming kind of thrilled. Really? He rode the white roller coaster? I mean, this is the child who would not ride on the carousel at the zoo because going around in a circle and up and down at the same time was too scary. He could sit on the peacock bench that is stationary if an adult sat next to him with their arm around him the whole time, but even that was pushing it.
When Marcos got home, he described the experience in greater detail. They stood in line for a ride and Preston expressed his concern, "Papi, I don't think I want to ride on this. It looks too scary. I'm a little nervous about it." Marcos encouraged him, "You can do it. This one just goes up and then down and then up again. It tickles your stomach like an elevator." "Okay, Papi." He was reluctant, but willing to try something new. That's HUGE! He didn't FREAK out!! And after EVERY SINGLE RIDE finished, he exited and said in a shocked and excited voice, "I liked it! I liked it, Papi! I really, really liked it! I wasn't even scared!"
Not only did he enjoy himself, but the other dad (who knows Preston VERY well) commented on the changes he could see in Preston. He could not believe the way Preston was interacting with the other kids, and the confidence he had when talking (he's usually very nervous around adults). I guess he looked over at Marcos and said, "What is going on with Preston? Who is this kid? This cannot be the same child who was too shy and nervous to even say hi to me. Now he's relaying every detail about his day, the thrill of the roller coasters, and what he wants for Christmas?"
Yeah...there are no words. It's incredible! I can't believe it! I honestly cannot believe it!
We are members of the Church of Jesus Christ of Latter Day Saints. This past Sunday was our ward's Primary program for sacrament meeting. Once a year the children 3-11 years old put on a program for the congregation. They have speaking parts and sing songs they have been learning throughout the year.
To give you just a little bit of background, Preston is 7. This is Preston's 4th year in Primary. Every year they have had to have a teacher specifically assigned to sit next to Preston. Sometimes he didn't follow what was going on and just needed help to figure out what he was supposed to do, other times he had a complete meltdown. He always struggled to sit still. He would have his head under the seat or be halfway falling off his chair. One year he was struggling so much that I opted not to have him participate. It was a sad year for me. Dylan was 8. Preston was 5. Dylan and his dad had gone on a trip to Argentina so that Dylan could meet extended family and learn more about the culture and language. Dylan ended up being out of town during the program that year and Preston couldn't handle it. I had two kids in Primary and neither participated that year. It was hard. I knew nobody could handle him. I was dealing with major fits and meltdowns at home that required me to physically carry him to his room to calm himself and decompress several times a day. Knowing this, I chose not to have him participate. But the day of the program, I stayed home. The reality of watching so many "normal" kids not struggling through every step of their lives was just to much for me to deal with that day. Other years, he was able to get through the program with an adult at his side, but did not open his mouth to sing one word and got really nervous during his little speaking line. He prepares, practices, knows it by heart, but when he gets in front of people, especially with a microphone, he freezes. He clenches his teeth, mutters the words with his body turned as far away as possible and just gets it over with quickly. That's what the other years looked like. I have to say that as difficult as dealing with a "different" child has been, Preston has been a true delight. Although he never sang, the kid loves music. He swayed and moved with the music and always struck a pose at the perfect moment. He feels through music and it's very obvious in his actions. Though quite distracting, it was definitely one of those moments where I smile and think to myself, "Yep, that's my kid. He literally does not know he's misbehaving right now. He's so unaware of the world that surrounds him that he does not see, hear or feel anything but this music. But yes, he's a complete distraction as he jams out to church music in front of the entire congregation."
Back to Sunday. The program started with a song. I looked up and saw Dylan singing and was quite pleased, turned my head to the left and found my spunky little 4 year old smiling and waving to everyone with all the charm of a princess, then turned my head again to find Preston. He was toward the top on the right. I did a double take. He was singing. Every. Single. Word. And...he was holding still and looking at the choir director. Tears just started pouring down my face. No way this is happening! Now, was it perfect? No! He ended up chatting with the boy sitting next to him way more than he should have. He also ended up dancing to the music more than once. A couple times he even struck a pose when the music changed suddenly or he really liked the beat. And at the end of a song that ended with the words "Holy Ghost" he put his hands up to his mouth like his teeth were chattering and said, "oooo" in a scary voice as he was sitting down. It doesn't help that it's almost Halloween. :/ I never know whether to laugh, cry, hide, or just smile and say, "Yep, he's mine" at moments like those. But overall, he was amazing.
When it was his turn, he stood up and confidently said his part. No mumbling. No turning his shoulders away from the congregation. No running away. No breathing or yelling something completely unrelated into the microphone. He just said his part without any help and went and sat back down. We are blessed with an amazing community of friends and family that love and support us. They have watched Preston grow and develop as we have sought treatment and worked with him every step of the way. So it should not have surprised me that after he said his part, several people turned to look at me and give me a happy, proud, or shocked look. I was already emotional (surprise, surprise), but seeing the reaction in my friends and family as they, too, publicly witnessed Preston's progress made me sob. Seriously! There was an audible gasp followed by free flowing tears. Yep, I did the ugly cry. For real. In public.
Just a quick side note on the chatting with his neighbor part. I don't think anyone could have predicted that. They weren't friends. They barely knew each other. In fact, after the practice the day before, Preston informed me that the boy sitting next to him didn't like him or want to be his friend. I didn't think much of it at the time. But Preston came home Sunday afternoon and told me they talked and worked it out and that they are friends now and had planned a playdate at his house the following day. Oh boy! Kids and their big plans. Words cannot describe what this chatty little moment means to me as his mom. Preston has always played well with others, but would get nervous and anxious at first and struggle to know how to make friends. Once he made a friend, he was usually a good playmate, but the initial part of relationships was always difficult for him. Now it seems he has complete confidence in his ability to interact with his peers. It's incredible!
This blog post would not be complete without discussing Dylan. Dylan is 10. He's supposed to be old enough to hold still and sing. He should be setting an example and leading. It's expected of the older kids, just as moving and waving and talking too loudly is expected of the youngest class (that would be our Marissa). Dylan has never created problems during a Primary program. But he would forget to stand up because he wasn't paying attention, move around a lot, and often space off. And he rarely sang. I'm not sure if the singing part was because he was daydreaming or if it was an "I'm too cool to sing in front of others" thing. But it was night and day watching him two days ago. He stood up at the right time and held still during every song. He watched the chorister the ENTIRE time and sang every single word. I caught his eye only a couple of times because he was watching the chorister so intently, but I subtly gave him a thumbs up sign so he would know I saw him and was proud of him. He smiled slightly, kind of nodded his appreciation of my compliment, and got right back to business. It was so mature. SO MATURE! I loved seeing that from him!
I know this blog is about Dylan and Preston and their experiences during Brain Balance, but I want to mention my little Marissa while I'm talking about the Primary program. She's a doll! She's cute and girlie, but totally tough. She's feisty, but loving. Probably like me. And my great grandma come to think of it. She sang, waved to everyone, kept changing locations when she stood up to sing, needed a potty break part way through the program, and turned on the charm as needed. The day before she came home and told me that they helped her with her part during the practice and they did it wrong. I'm guessing she must have hesitated so they whispered something in her ear. She was so frustrated so I attempted to help her problem solve. "But Mom, they think I don't know what to say. But I do!" I said, "Just stand up and say your part and they won't think they need to help you." "Yes they will," came the reply. "Well, just tell them that you know your part and don't need help." Of course I didn't think that through at all. There was no time to tell them she knew her part before she actually got up there. I was just trying to help her have confidence to start speaking when it was her turn. She waited in line for her turn to speak, stepped up to the stool in front of the microphone, looked up at the leader helping the kids with their speaking parts, put her hands up as if to gesture and push her away, and whispered loudly, "I don't need any help!" Then she stepped onto the stool, took a deep breath and spoke clearly into the microphone, "I can show love for my family by giving them hugs and kisses." Then she stepped down and sauntered back to her seat. (And yes, she is the one who decided what to say. I could not even attempt to give her a suggestion because she had her mind made up already when we were practicing at home. "No, Mom! I am going to say hugs and kisses!")
My children have amazing teachers, leaders and music instructors. They were prepared by the very best. But I was still worried. You can only do so much with the material you are given. But they were AMAZING! I can see the growth already, and we are barely scratching the surface with the changes we are witnessing. It's surreal. I feel like I'm living in a dream - and not just because I'm completely exhausted. ;) It's one of the most taxing experiences of my life (physically, mentally, emotionally and spiritually) but it's happening. We're in the middle of this process...of change. There really is hope for children with a myriad of challenges, disabilities or diagnoses. I just want to shout it from the rooftop! Don't give up! You can do this! There is hope! The brain is absolutely fascinating. You don't just get what you get and pray you end up with a good one. The brain is pliable. It can change. It does change. And A LOT of things affect it...for better or worse. It's so crazy being in the middle of such an intense process. I feel like we're in a cocoon. We're kind of in our own little sheltered world right now, with very few people able to see the day to day effort we put forth. My scientific-minded Dylan would tell you butterflies do not spin cocoons, they shed their skin and form a chrysalis. So I guess my little caterpillars are in the process of forming a chrysalis. It's hard work! So, so hard! But it's life-changing! The movements of a caterpillar creating its chrysalis are barely noticeable, but with each movement something is happening. My boys are creating the environment where an incredible transformation will take place. And the hope is that when they emerge, not only will they be breathtaking, they will have wings to fly.
Dylan has come a long way with his core strength and balance. For those of you who aren't familiar with Brain Balance, core strength is important for pretty much everything. I think we often forget that in our world of technology and flash cards. But moving matters and core strength is a way big deal when it comes to the brain. So, we work on core strength A LOT! We do other exercises as well - eye exercises and exercises to inhibit primitive reflexes - but we also do pushups and sit-ups. It's amazing how quickly kids can change just from working on core exercises three times a day. Dylan loves doing headstands, but his balance wasn't great before we started this program. He has improved so much! He can now do a headstand for much longer than he's ever been able to in the past. He still needs some work, but he's getting there. Also, Dylan has been wanting to learn to do a backflip forever, but he always gets nervous. Well, after trying and trying, he finally got his courage up and did it. Now he's on fire! It's amazing how much more you can do as your core strength increases!
I wasn't going to bring up the bad behavior again, but for the purposes of documentation, I'm going to briefly discuss the difficulty we are experiencing.
The past 2 weeks plus have been SO HARD!! I'm talking explosive, angry, defiant moments from both kids. Yelling, slamming doors, "fine then," "I don't have to," "You can't make me!" type of stuff. All! Day! Long! Preston usually does well in his BB sessions, but he often acts shy or digs his heels in right before he goes back. The past couple times, I've had to literally pick him up and drag him into the room to get him to start on time. He's usually fine a minute or two later. Kind of like leaving a toddler with separation anxiety with the babysitter. They scream for a minute and then they're fine. I've been doing my best to figure out what more we can let go of to make brain balance our number one priority. Preston's schedule is taxing for him. We tested him last spring to get a new IEP in place so he currently goes to tutoring for reading 4 mornings a week. And it is A LOT on top of home exercises three times a day, sessions at Brain Balance, core school subjects at home, etc. We may try to alter the schedule and see if tutoring can be put on hold until after he finishes Brain Balance. I've been close to a breakdown a couple of times the last two weeks. Literally. Learned through my own momentary health crisis that I can't just put myself completely on hold while I try to get through this process.
The behavior has been so bad that I decided to keep the kids home from the first hour of church last week, knowing the chances of a meltdown from someone was very high. That is not something I EVER do!
Home exercises were getting to be excruciatingly painful to get through. Preston would drag his feet (a common occurrence for that one), Dylan would get mad because they are doing exercises together and he did not want to be slowed down, a fight would ensue, I would spend most of the time trying to pull things back together. Meanwhile, the baby/toddler around these parts would be walking/falling/climbing on children who are supposed to be doing exercises. And the poor neglected 4 year old would start whining knowing she wouldn't get attention from me any other way. Yep! A mom could lose her mind! To cut down on the insanity, we are attempting to do exercises when both my husband and I are around (whenever possible) or when the baby is napping so we don't have to contend with the little man. Also, I finally decided it was worth it to let Dylan proceed at a normal pace and work with Preston more slowly. I have even found that doing exercises separately is worthwhile. Although it does take more time overall, it makes for moments of peace in our home. I really hope in time we can get back to exercises together, but for now, desperate times call for desperate measures.
Dylan's behavior has been somewhat better the past couple of days, but Preston is still struggling. We'll see if this means Dylan has made it over a developmental hill of some sort or if is more of a temporary break.
I wanted to share this awesome milestone on the blog. Preston was able to do the monkey bars with one hand in front of the other for the first time last Saturday. He learned monkey bars last year, but always had to put one hand on the bar and then move the other hand to that same bar. And he never makes it all the way across. You can tell it's still difficult for him. He needs a lot more practice, but this is so exciting! My husband and I both got teary-eyed watching him! He couldn't believe he made it across! Then he did it three or four more times. So AMAZING! I thought I would share something good today since this has been such a HARD week! I need to remind myself of the positives that I can see so I don't focus so much on the whining, meltdowns, and talking back I'm experiencing right now.
Here are a few of the things I have noticed that I feel are worth mentioning.
Preston
He now likes pickles and olives. He wouldn't touch them before.
He loves guacamole. It's his new favorite food. I'm not sure he had ever eaten an avocado before. He always thought they looked disgusting and wouldn't even try them until now.
He is asking a MILLION questions. It's like he can't shut his brain off. He talks and talks and talks. When I ask him to do something he says, "Okay, mom. But can I just ask you a question first?" That happens like 100 times a day.
He copies others (mainly what they say, but also what they do)
He thinks EVERYTHING is funny.
He is still VERY loving to his baby brother! He holds him and kisses him and just wants to be around him, but he is almost too rough and too loving with him now. He was like that a little bit before, but now "loving aggressive" behavior is magnified. I have to watch him around the baby the way I would need to watch a toddler.
His new favorite phrase is "But that's not fair!" It's annoying, but I still smile when I hear him and realize he has NEVER said that before. He also says flat out tells me "No!" says "I'm not doing that!" "I don't have to!" and "You can't make me!" He's defiant, but he's making progress. Wa-hoo!!
He has slimmed down physically quite a bit. He seems to be able to feel when he is full more than he could before. He will say, "No thanks. I'm full" and that did not happen much before he started Brain Balance.
He's also much stronger than he used to be. His muscle tone is becoming more pronounced.
Above all, he seems to have so much more energy. He can walk and hike and run way longer than he used to without complaining or seeming taxed at all.
Preston used to lick things. It was one of the more obvious ways we could see the sensory issues he had. I haven't seen him lick anything lately. But, I've noticed he has been chewing on his clothing lately. A LOT! I'm not sure if that's an improvement or just switching one need for another, but it's something I've noticed.
He is so chatty! He won't stop talking for anything. It's so fun to hear what he's thinking. The other day he was playing in the sand box. He came in and said, "Mom, what would happen if we ran out of sand?" I replied, "We would probably get some more." He continued, "Where would we get it? From the desert? Or maybe from the beach. Yeah, I think that's what we would have to do. We would have to go to the beach and bring some sand home with us." I wish I could write down EVERYTHING he says because it is just so fascinating to see how his mind works.
He is also getting to be more and more independent. Not only can he do more for himself, but he WANTS to do more for himself. That part is so great! It's been tough having 4 kids, but only one is really independent in most things. I feel like I have had two toddler/preschoolers and a baby and just one child. It's starting to feel more and more like Preston is a kid, not a toddler or preschooler than needs help with everything.
Dylan
Dylan seems much more mature in so many ways. Many times when I tell him no, he will start to say, "But mom..." and catch himself and say (after a sigh) "Okay, mom. Maybe tomorrow." (Not always. Sometimes he's even worse, but we have seen a jump in maturity.)
He is enjoying soccer more and his skills have improved as well. He was good before, but he is much faster and his skills are tighter now.
Overall he is calmer.
He is often sad and overwhelmed, but he isn't losing his temper as much like he used to.
Dylan used to put his shirts in his mouth and chew on them all the time. We haven't observed this behavior in weeks.
Dylan would kind of jump and dart when he was going somewhere in a hurry. Almost like jump, flap his arms once, and then dash away quickly. I think it's a pretty typical ADD type behavior. We have never had Dylan tested, but my guess is he would be classified as having ADD or ADHD if we were to have him evaluated. This behavior seems to be diminishing. I've observed it randomly here and there, but it used to happen several times a day.
Dylan still doesn't want to eat tomatoes, but he'll eat them in things. He's eating guacamole with tomatoes in it and loving it.
His impulse control and delayed gratification seem to take one step forward and three steps back. When he decides he wants something, it's ALL he can talk about. And when he has to wait for something he wants, the emotional meltdowns start. For example, he earned some money and wanted to buy a kendama online with his money. I told him we were taking a break from spending, but we would look at allowing him to make a purchase next month if his behavior is good. Oh, the meltdown!! All control lost!!
We're definitely seeing progress, but we're still very much on a roller coaster ride. Not from day to day or week to week, but moment to moment. We have some awesome ups every day, but plenty of downs as well. I'm trying my best to be calm, consistent, and loving. This is crazy hard! My stress level has been so high! Life is just super busy! But although the program is difficult for me, I know it's even more so for my boys. They're changing! It's AMAZING, but it's a lot for them as well. Imagine going through so many developmental stages at once. It's exhausting just thinking about it! So...we're doing our best to let go of the things that don't matter right now and focus on what does. Never easy, but necessary.
It's been a crazy hectic week so I'm just getting around to posting this now, but Preston SHOCKED us all when he was able to cross his eyes the day after Dylan. I seriously could not believe it! Pretty awesome!! The progress he is making is remarkable. When I look back and think of things he can do now that he couldn't do 5 weeks ago, I can't believe it. It feels like FOREVER, but it's only been a little over a month. Crazy!!
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