Can you see the differences in this coloring and handwriting??? The first one was completed by Dalton about 6-8 weeks ago…the second was completed by Dalton this past week at school. Wow!!!! Great job, buddy!!!
Current situation…I am sitting outside Dalton’s therapy room for support as he is having an extremely hard time getting through his session tonight. Lots of crying, screaming, whining, resistance and difficulty transitioning between activities…change and unfamiliarity is proving to be exceptionally difficult tonight…
I want to take him away from it…my heart hurts but I can’t ever let him see ME cry. No matter how badly I want to…I fight the tears more times through the day and night than anyone on earth knows. I know he has to work through it to progress and grow…. #thestruggleisreal
Try Everything by Shakira
Dalton is responding amazingly well to the Brain Balance program. So well in fact, that he has begun his first phase of regression earlier than expected! This is fantastic news because it means that the program is working!!! Woot woot!!!! Our boy is a rockstar!
Here are some progress highlights from this week:
- His interest in trying new foods is continuing to increase.
- His gag reflex at food textures and smells is lessening.
- His apologies for accidents/bad choices seem to be more sincere and more effort is being made to not make them again.
- He is showing an increased affection towards Quinn…although he is still “an annoying little brother”…LOL!
- He is showing an interest in making HEALTHY food choices for himself.
Now…all that being said…I also know that Dalton is becoming more aware of his physical appearance…and a couple of days ago he said, “I’m not gonna be a fat boy anymore!” I’ve never actually heard anyone call him “fat”…God help any person that I ever hear call him that…because THIS momma bear does NOT play well with others that are ignorant bullies that mistreat her cubs.or anyone elses cubs for that matter. I don’t care if it was another child or an adult. There would be a reckoning and a “conversation” would occur that would put to rest ANY future desire for them to ever behave in such a manner again! #imightneedbailmoney. But I digress…
I’m excited and hopeful to see what this next week brings!! I am so proud of Dalton and of how hard he is working. It truly is remarkable:) #mysonismyhero
Today Dalton and I went on an adventure. It was his reward for the most recent round of Brain Bucks that he earned. We were heading to Toys R Us to choose a new board game. As we got half way there…panic set in. You see, I neglected to pay attention to what time it was and it was lunch time…#momfail. And I started running through a list of restaurants in my head that might have “gluten free, dairy free, sugar free” menu options….I couldnt think of any that would have something he MIGHT try. And then I started thinking about taking him back home to eat… And then I thought that maybe he might not think about lunch until after Toys R Us and then we’d just go home and skip the rest of our errands… And then a voice from the backseat said, “Mom. I’m hungry. Where are we gonna go for lunch?”
Shit…here we go…he’s going to want what he always wants when we are out… and it’s what he hasnt had in 2+ weeks…McDonalds… So I very calmly (on the outside…flipping my shit like Daffy Duck on the inside) said, “I don’t know, buddy. What kind of food do you want?” I was ready…I was waiting for it… Here comes the response… “Hmmm…I don’t know mom. I’m pretty hungry…I want something good BUT it’s NOT McDonalds!” I almost drove into the car in front of me… I was beyond rocked by this response!!!
So I pulled into a space in the parking lot and immediately started searching for restaurant options around me…and I stumbled onto a feature on the Red Robin website that allowed me to choose things in a meal I wanted to avoid and… BOOM BABY!!! Victory was mine!! Chicken Stickens on the kids menu!! Dalton was also excited because he loves grilled chicken and he said he would, “give it a try”.
He LOVED it! I have included a before and after pic below of my Dalton…love my little tour guide on this journey!!! To the moon and back:)
Today was a struggle…today was one of those days when just breathing feels like it requires more effort and strength than I have to give. The little voice in my head is SCREAMING to just, “give in” and “give up”. Today is a day that I wanted to fast forward through before I got home from work…my reality feels like the walls are getting tighter and darker around me…confinung me to the tiniest inches of my dark little corner that I want to to fold myself into.
I know that “tomorrow is another day” and that it will offer a fresh set of eyes, a slightly more rested body and a soul with fresh determination to pick it all up and try again…but for now…I’m just tired and struggling to keep it all together for just a few more hours before I can start the chapter of another day.
It’s been a night of relentless fighting and screaming intermingled with SHORT periods of distracted quiet and redirection. A night of feeling like I’m taking all this on my shoulders alone without any extra support from the outside of my extremely fragile bubble…that everyone thinks is unbreakable…
But I fight on…fight on with the hope of a better tomorrow…
So…we have reached the end of week one of our Brain Balance journey. While the progress is not measured as “huge” to most…to us it IS noticeable.
- Dalton has slept through 5 of the 7 nights he’s been in program.
- Dalton has tried 12 new foods and 10 of them were accepted and he ate a full serving of them.
- Dalton has successfully accepted the elimination of all gluten, dairy and sugar from his diet.
- When presented with a new food that he doesn’t like, instead of screaming for the food to be removed from him plate, he tolerates it being left there and a new option is given to him on the SAME plate.
- Upsets don’t escalate to screaming fits and tantrums as often as they used to.
- Limiting screen time to 1 hour (2 hours on weekend days) each day has been accepted and isn’t being asked for on an “every waking moment” basis.
While focus still proves to be a challenge, I consider these HUGE strides!! #thankyoujesus. And while this may sound strange to some…I really feel like I am “falling in love” with him all over again. Perhaps something that parents of “neurotypical” children can’t grasp or fully comprehend…but there are periods of time that I personally have to emotionally and mentally distance myself to be able to cope with the daily struggles…have to almost see things from afar instead of living in the here and now with him…the periods of keeping myself farther removed are becoming fewer and farther between…I find myself looking forward to going home to him more and more each day…seeking opportunities to spend more just “me and him” time than I normally would have…it’s been my defense mechanism…but it is crumbling away…and I welcome it!!
Today he said the funniest/cutest thing on our way to the Brain Balance Center…
Dalton: “Mommy, Q doesn’t look like me.”
Me: “No he doesn’t buddy, he looks like Q and you look like you.”
Dalton: “I don’t like his design…”
Me: “His design?”
Dalton: “Yeah…like his hair isn’t like mine and I want it to be like mine.”
Me: “Dalton…you are adorable.”
Dalton: “He’s my little brother…I love him…I just don’t want him to know that ALL the time…”
Love this kid to infinity and beyond!! Onto week 2!! Let’s do this!!!
So…last night we had our Assessment meeting at the Brain Balance Center. It was an awkwardly quiet car ride all the way there. So many unknowns of what the assessment was going to show. And in my mind I was in “IEP” mode. #preparingfortheworst
Through my reading and research I felt that Dalton was going to developmentally and functionally fall between a 2-5 year old…and I was right. Dalton tested with most of his results falling in the 4 year olf range. However, they (and us) do NOT feel that he has ANY type of a learning disability. This was GOOD news. They did confirm that his right brain was significantly weaker than his left brain and the program tailored for Dalton will be working to “catch up” the right brain to the left brain so they can better work together.
My mother and my ex were both present at the mtg and the importance of sticking with the program was stressed. And WE WILL be able to tell if they are not following the program (diet, exercises, limited screen time, etc…). Everyone MUST be on board in order for Dalton to be successful in this program. And Jasen and I will do whatever necessary to ensure this.
The road ahead is long and overwhelming at this point…they estimate from his initial assessment that he will be in program for 9-12 months. That’s 9-12 months of exorbitant financial, emotional and mental strain…#purehellonearth. We are working on faith, belief and hope in ourselves, our Dalton AND in this program to find a brighter and more capable future for us all. We will reap the benefits of the “all in” efforts that we will be giving to our Dalton 24/7.
Yesterday was a bit of a challenge. Dalton woke up with a headache and continued to complain about not feeling well throughout the day at school. It’d been a long week already and it was only Thursday. He did eat all of his lunch at school though…although I was disheartened to see that he brought home an entire sandwich sized ziplock bag filled with rainbow twizzlers and rolos. He immediately started chowing on the candy on the “sly”…which I quickly took away from him. But he had already eaten 2 twizzlers and 3 rolos.
This was his first exposure to sugar all week. It didn’t make him hyper…but it totally threw his focus off. It was completely apparent through the rest of the night. During his Brain Balance exercises he struggled and lacked real effort which was totally a 180 from how he had been performing all week. He moved and flopped around like a piece of cooked spaghetti and he added about 20 minutes of time to his complete regimen.
In addition to those setbacks he also showed signs of intensified emotions when things didn’t go his was AND he had at least 3 solid hours of “selective hearing”.
By bedtime he started to rebound so I attribute that to the sugar being out of his system. He was able to better follow directions, reach goals and have a calm conversation about change in his routine weekend schedule.
If anyone out there doesn’t think that sugar affects everyone differently…they are dead wrong. Hoping that today stays back on track AND and am “looking forward” to getting the full results of his Brain Balance Center evaluation tonight. #imadonkeyontheedge
Today was a day of successes in spite of a small set back.
A meltdown happened between the time Dalton got home from school and the time I got home from work…but as soon as I walked in the door ..he calmed and refocused and we got busy on our exercises. No 30 – 60 minutes of recovery time…#mindblown. We then got to work and got 2 sets of his Brain Balance exercises in, he ate his gluten free, sugar free ALMOST completely dairy free dinner and bounces out the door with his daddy to go to his Brain Balance Center session. Great report from his coach and then home to chill.
While we were getting ready for the next day, he said that he wanted a “home lunch” at school tomorrow. Now…I knew that this was coming…I knew last Friday after his eval and new dietary guudelines that THIS day was going to be a problem. I immediately started to internally panic…my anxiety was taking over…even though I knew this was coming and that the goal is to ultimately have him “brown bag it” every day at school…panic and every worst case scenario started to play out. #justbreathe But then I dug deep, put on my warrior mom face, pushed my personal anxiety and issues down and offered him the option of helping me pack his lunch so he could sample and taste things that would go into it…AND HE DID IT!!!!! Tried 3 more new foods and he fell in love with the Sea Salt Krave beef jerky and asked for that, dried pineapple, veggie chips, a mixed berry ancient grains bar and a berry lemonade juice pouch.
Now…of course I will have to wait and see what his lunchbox looks like when he comes home from school tomorrow…but he was SO completely excited about this that I super optimistic about it! I love that he is my tour guide on this journey. I have learned so much from him. #hesgotthis