My mind is kind of everywhere because there has been so much going on the past few weeks and I want to write this down as clear as I can.
I had to make a trip to Utah with the boys a few weeks ago for a week because I had contacted Ashley my cousin who works with Jared. She works with kids who have developmental delays at what is called “a brain gym”. This is something they have out in Atlanta and we considered going there but I’d have to drive 3 hours each way or move there alone with the kids and have mike come visit off and on. It also cost $6,000 plus.
The neurofeedback treatments we’ve been getting the past 6 months helped increase his frontal lobe by 33% but it was never something we felt was doing a lot of good, nor did we like the center we were at (they weren’t helpful, they didn’t explain things thoroughly, they didn’t seem to care or be really hands on) and it cost $1000 for 10 treatments.
After talking with Jared he said coming out would be the best option: treatments would be free, and Ashley could give me work I could do at home and FaceTime her for progress reports.
So despite the fact that I didn’t want to go back to Utah (I have been struggling with family issues, I always get anxiety when I go back to that state from all of the past memories, and going would interrupt my progression towards my first fight) I packed our bags and went. I listened to a lot of self-empowering audible books prior to going, just to give you an idea of where my negative mindset was (there is always drama in my family and I didn’t want to be apart of it. My sister has been frustrated that I decided not to attend our reunion the end of July for reasons I just listed—drama plus not wanting to spend all that money to get out there on a trip that might be full of drama).
Arriving in Utah was a tad interesting—my sister couldn’t be there to pick us up so I had to get all our bags and the kids had to help me take them out to the bus (we got on the wrong bus and had to get on another bus). We had to pick up Michele’s car in long term parking and drive to park city for Amaris 1st appt. we were running late, we had to fill up my sisters car that was on empty...it was a tad crazy. We also had a 3 hr layover in Dallas so the kids had been traveling for 13hrs straight. Thankfully they were amazing! They are seriously the best travelers!
It was good to see Jared and have him give the kids a checkup (physical and emotional throughout the week). Just to pause here: Becks was holding onto my emotions of perfectionism and his dads inability to feel safe talking about things. He was also holding onto this feeling of needing to be the spiritual leader in the House because his dad wasnt filling that role. (I know there are so many gaps here—haven’t really explained these issues that have been going on in our family and marriage, but it’s truly been so hard writing everything down with all of the jobs I have as a mother and wife). Amari was also able to work through my issues he was holding onto of not being accepted for who he is—something Jared taught me was that kids are so innocent, they don’t have the life experiences we have so their mindset is different. He doesn’t care that he can’t speak as well as kids his age—to him he can get what he needs—he doesn’t care that he can’t do the same things developmentally that his peers can. All of those fears are coming from me and being projected onto him.
I’m just so extremely grateful that the boys have Jared in their life to help them emotionally—how much further they will be in the future with his help.
Moving on to the rest of the trip. Things started turning around as I was able to spend time with Maile and Jaxen and MICHELLE. We had some great talks (I feel like I was seen for all of my personal growth and I was able to share all the ways I had grown with Michelle who truly needed it as she’s been dealing with a lot of personal struggles and struggles raising Jaxen. I’m grateful I could pass on helpful information to her that I know can change her life. I’m also so grateful for the experiences I was able to be apart of and Becks was able to witness (Jaxen going from not wanting anything to do with religion to coming back from EFY a few days after we arrived, to being totally transformed. It was incredible to hear his testimony and have him share his spiritual experiences with us. Becks looks up to Jaxen so so much! It was priceless to watch him interact with Jaxen, create memories and connections with him and learn by his example. One great lesson I learned being there that I need to remember in my future parenting is to let my kids make choices, to realize the beauty in parenting them the way Godparents is—to let us choose, to let go of control and have trust that our children will run into that “anointing” one day. To remember all I’m required to do as their mom is to love them and to give them life changing opportunities. The reality is that they will be more affected by the outside influences than by their parents. So I need to continually put them in places and give them experiences where they can gain their own testimonies and find their own truth (send them to EFY, send them on humanitarian missions, put them in scouts, etc).
I was so impressed with my own self to see just how strong my mindset was being there. It’s like this was the testing ground after all the growth And change I’ve experienced this past year. And I passed the test! I feel so blessed for all of these experiences gods given me and put me in to answer years of prayers to help me gain more self confidence, to be in control of my negative thoughts, to be positive, to own my no, to not care what others think, to step outside my comfort zone....all of these things were tested and I passed them all. I can’t express how peaceful I felt inside, how proud, how grateful to God! These changes are worth more than all the riches in the world!
Moving onto Amari and his treatments:
So Ashley did a comprehensive test and discovered that his brain stem is not fully developed. This affects everything: his sensitivity to sound, his reflexes, his balance, his coordination, his motor skills, his speech.
Basically she explained it to me like this: (through genetics or whatever it was, we don’t know), his brain stem which develops first as a baby, wasnt developed fully and as he grows into an infant his frontal lobe and the other parts of his brain starts to develop. Well no matter if you fire up that frontal lobe, because his brain stem isnt developed he will revert back to baby tendencies (like plugging his ears when he hears a loud noise—fight or flight syndrome, or holding a pencil in a Palmer grip...). So no matter the neurofeedbacking treatments we were getting to fix the frontal lobe we need to fix the brain stem first.
She told me as of now his right brain and left brain were not communicating which affects everything. She also tested him using a metronome unit and he tested 4 seconds after the beat. She told me how this translates into daily interactions: I ask him to put his shoes on, it takes him 4 extra seconds to hear the request, 4 extra seconds process what I said, and 4 extra seconds to do what I ask. Makes me feel bad that I haven’t been so patient with him in the past.
The good news is that these delays are completely reversible. Once that part of his brain is stimulated and fired up they will be fired up for life and he will be where his other peers are his age. This was such a huge relief for me to hear. And I know even though he doesn’t fully understand it now but something he will be so grateful for. 👏🏻👏🏻
So over the course of the week I was there she showed me all the work that she does with kids that experience developmental delays. She’s had countless testimonials of the kids she’s helped. Some it’s taken 3 months, others a year, it just all depends.
Basically she starts by stimulating all of his senses: peppermint for his smell, a metronome or Mozart music for his auditory, blue glasses for his sight, a vibrator on his arm for his touch.
Then she does exercises that help his eye movement (he can’t view objects without moving his head which affects his peripheral vision). So she will have him try to follow an object with just his eyes.
Then she does these exercises with him that coordinate with different aspects of the brain. Just seeing her do the exercises and explain how that particular exercise heals that part of the brain made so much sense to me. I took videos of what she did and put them on my HD so you can refer to those for more detail.
He walks on a balance beam different ways, he works on her computer listening to words in each year and eventually he should be able to repeat both words he hears. He works on her metronome unit and he practices tracing shapes to help him learn to hold a pencil and he does work on his fine motor skills.
I was mind blown, and moved to tears, to say the very least to see, just after 2 days, to see him have a fascination with throwing a ball. He’s never been interested throwing a ball and he wanted to play catch with me for the longest time, telling me “move back mommy, I can throw farther!”
Jared told me how amazing this was for his brain.
It was incredible to see him pick up a pencil the right way and trace shapes. She had to remind him a few times when he wanted to go back to the Palmer grasp but he did it!!! I nearly cried when she told him he was done tracing and he could put the pencil down and he didn’t want to! He just kept drawing. He’s always felt inferior with drawing and to see him want to keep doing it on his own was so beautiful!
Then one day I went in and he said to me “Mommy, look (pointing at his tracing board) it’s a square, it’s a circle! Then we went to get gas and he rolled down the window and looked at the gas tank and said “mommy, it’s a rectangle! You’re cars gas is a rectangle too!” Then he looked at the pump and asked “what shape is that?” Just seeing him thirst for knowledge was so beautiful. It’s like a light bulb went off and he was all of a sudden discovering a new world.
I can’t tell you how amazing it was being there and getting so much help and support from family. It was so nice being able to work through all my fears and issues with Jared. We talked through my fears and overwhelming feelings going back to AL and having to do all of this work with Amari and having to deal with people from school or the community who labels him, isn’t patient with him, treat him differently, etc. I was so grateful that Jared said “you simply tell people he has a developmental delay. He doesn’t have ADHD, asbergers, or autism.” He told me how much growth he’s seen just in the two years since he’s seen him. “He comes and greets me after work, he runs up and hugs everyone he sees, he makes eye contact, he’s present, he can communicate what he needs, etc.”
I was so grateful that others saw what I saw because I feel like the past year Mike and I have been advocating for who Amari is alone. Others see it too—-he has such a support system.
Fast forward (skipping over conversations, memories made, etc—you can view the blog or HD to see all the pics and videos) to Sunday (two days before I was to leave to AL). Remember that my heart was so hard coming to Utah—I wanted to get in and get out (you can see how the Lord waited to give me this thought until I had been there nearly a week and had seen all of these things and had these good experiences). I woke up to get ready to go to church and the thought came into my head “maybe I should move back to UT so Amari can progress in the ways he needs to”.
I sat with this thought all Sunday. I weighed everything out in my mind. I could go home and do these exercises with him but Ashley is going to scale it way back so it’s a manageable plan for me and Amari. She will FaceTime once a month and add new things as he progresses. She told me I have to be consistent with the work and his diet (no gluten, dairy and no artificial flavors and minimal sugars) for one solid year. Me doing it on my own will make the process a lot longer. Plus being realistic I know there will be days I don’t get it done because I’m stressed out or tired, this will lead to me feeling guilty and feeling so much pressure that if Amari doesn’t succeed it’s my fault.
I started feeling so much weight and stress. I knew I had to consider this idea. It’s crazy because this time I really sat with the idea and started mapping out what this option would look like. I discussed it with Michelle after church and she agreed that this would be the best option for Amari. She made such a good point “you put a child in school because teachers went to school to get a teaching degree; you put a child with a speech therapy because you aren’t trained to be a speech therapist. Although you could do some of the exercises with Amari you aren’t Ashley. She’s been doing this for years and she’s used to dealing with all sorts of kids that have similar delays like Amari.” I realized at that moment it wasn’t because I didn’t think I couldn’t do it, it’s because I know in my heart that there is someone more educated and suitable to help him. I want to be Amaris mother, and love him unconditionally. I don’t want to be his speech therapist or his developmental teacher and run into the possibility of feeling guilty or, getting frustrated.
Thinking it all through and knowing there was a high possibility that his brain stem could be fully developed after just one year made me feel so happy and peaceful inside.
I was nervous to bring up the suggestion to mike because I knew this decision might entail him having to stay in Bham and I know that’s something he’s never entertained.
I was seriously surprised when he said “I will consider it” after I mentioned it to him.
The last few days in Utah I spent time thinking through the details and discussing everything with Jared. I knew this was a heavy heavy decision and I wanted to make sure I made the right one. Jared helped me mapped out every option even down to the finances and then I asked him his opinion because he’s counseled couples who have marriage issues and he’s also seen kids with developmental delays. Which one out weighs the other? He told me that the divorce rate of marriages with a developmentally delayed child are extremely high. He said the stress alone is hard for couples to stay strong through. I expressed to him how nervous I was to be separated for a year. And how frustrated I was that I wasn’t confident in my marriage—that this decision couldn’t be easy, that I had to debate whether I should chose my child or my husband because I wasn’t confident that mike would do well being away.
It was a hard decision and it took some time to really feel things out but I knew, despite the fact that I didn’t want to move to Utah, that I didn’t want to leave all the training I’d worked so hard for the past year and put my fighting dreams on hold, that I didn’t want to leave my friends, and jeopardize my marriage, etc., that I had to strip all things away and make this decision based off one thing: What’s best for Amari.
It’s only 1 year, we have to do what is best for the health of our son. And I know that this is the best option. I can’t tell you how peaceful I feel about this decision. It’s the same exact feeling I’ve felt so many times in years past moving from one place to another not knowing the reason why but knowing it’s the right decision and feeling so peaceful about it. I have to tell you how incredibly empowering and beautiful it felt to feel those feelings once again—it’s been a very long time and I know I have to listen to my gut and do what I know is right. I know just like in times past that if this is the right decision the will work everything out, he will provide a way.
So fast forward to going home and feeling unsettled being back—it just didn’t feel right. I mapped out a plan and I talked to mike about it—told him how I felt peaceful about it. He surprised me by saying he felt peace about it too and that he knew it was the right decision.
The past two weeks have been a bit of a crazy yet amazingly good whirlwind. Here you will see the miraculous hand of God at work. It truly astounds me and fills me with so much gratitude that the lord is ever aware of our existence. You really can’t explain it any other way than the hand of God.
So we never got an offer on our house (we put it up for sale right before I left for UT—crickets). After I made this decision we got an offer on our house and they needed to be here the exact same date we needed to move out. 2nd miracle: was god softening my heart to even entertain this decision—if he’d given me this thought two days after being in Utah I’d have shut it down. 3rd miracle: apart of this decision included finding the best school in the area for the boys. I talked extensively to Deirdre about the charter school her kids went to and it sounded like the most amazing fit for the kids (self-learning, no homework, flexible hours, they encourage play time, they encourage travel time with your family—totally allows us to travel to Thailand in February for 3 weeks—something we couldn’t have done in AL, plus it’s STEM based so they have this huge center for the kids to engage in their learning– a huge glow fish aquarium, a LEGO center, a climbing center, etc.)—it’s kind of like the Montessori school we wanted to put him in and nearly paid $10,000 for and it’s FREE.
So the 3rd miracle was me applying to the school and hoping the boys could get in and two days later I received notice that they got in!!
Then mike said he was going to try and come live with us and just come out once a month to do blitz week in AL. We were a bit nervous to talk to Adam, the owner of the company and see how he’d react. Finding a place to live and figuring out mikes work were the last two details to figure out. I was a bit anxious thinking how mikes boss was going to react. Then we went to Jakes old house for the 4th to meet up with some of mikes co-workers and Jake was there. He heard the news about us moving back to UT and I was shocked with his reaction, he was pumped! He proceeded to talk to me for 30 min about how this was the best decision mike could make for his career; “he should have made this decision years ago, he could have grown so much faster”. He told us that he could do like he does and work 4 days a week and recruit like crazy and build out a really productive team and then spend 1 week a month doing blitz week. He told him he could have his office at corporate cause he’s never there and that he could help him with recruiting. I told him I was nervous for mike to talk it over with Adam and he said Adam would be cool about it.
I can’t tell you the level of peace I felt after talking things through with Jske and getting his take on things. I could tell mike felt the same way and a huge weight was lifted off his shoulders. It was seriously not a blessing I was anticipating. I was prepared to move no matter mikes job situation and this was just the icing on the cake.
The next day Mike called Adam and he said he was on board with everything. 🙌🏻🙌🏻
Truly it’s all been the hand of god! I think snout the past year and looking at almost 100 homes and only liking two which ended up being sold the same day they went on the market; being so frustrated with the whole process and getting discouraged and upset with it all—even getting so upset with the whole loan process and us not being able to get into a decent house despite the fact that we have incredible income. 🙄🙄 and then to want becks to go to That Montessori school sooo badly and to nearly give them a check for 10,000 and to literally be turn up inside about it for some unexplainable reason and then to pull out the very last second because I just didn’t feel right about it—-complete hand of God. How grateful I am for his ever clear vision! How grateful I am that he kept shifting the puzzle pieces as I was trying to make the pieces fit in the wrong places. He is merciful, he is kind, he is tender. As my mom said when I shared the whole story with her: “it’s truly a testimony that God is so aware of Amari! He knew what would be best for him. He loves him and wants the best for him. ❤️❤️ yes, yes, yes he does! He is one special boy!
So all we have left to do is to find a place to live and go through the insane process of selling the house and moving.
I told Catherine, my girlfriend and she started crying. It will be hard for the boys to leave their friends and for me to leave the friendships I’ve made here.
After finalizing most our plans we surprised the boys with a game of Pictionary. They had to guess the surprise mike was drawing. Becks guesses it: moving to Utah!! He was a bit confused in the beginning but once we talked things through with him and hyped all the good stuff up and told him about his awesome school he was super excited!!
We are looking at this like a year long adventure! Something new, fun and exciting; something to break up the monotony of our life. This will be a year of incredible growth and change for all of us especially Amari. I can’t believe I am saying this but I’m actually really excited!!
It’s so funny how you can feel so peaceful and good about something and how things will come a long to try and derail your peace. There’s been some family issues come up which has made me wonder if I’ll be feeling with drama that made me hesitant about going to Utah in the beginning. And then I have been starting to realize just how real this all is and it makes me a bit fearful that we will like it there and the kids will love their school so much that we won’t come back to AL....that Utah might be home for longer than a year. It terrifies me to be honest. But as mike said I can’t think about the future, I have to take it a year at a time and see what will come of this next year.
Thursday, August 2, 2018
Utah Journal Post
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