Welcome to another entry in The Beginning of the Bend.
This is where I document what it means to care, to hold, to mend, without erasure.
Where I share the journey not of fixing, but of honoring.
These are the notes I’m taking as I walk this bend in our path.
This is Week Two.
If you’re new here, welcome! If you’re curious about this journey; why I chose it, what I’m hoping to uncover, and what I’m hoping to create…you can find more about The Beginning of the Bend post series below.
Where We Are
Jumping right in: This past week was pretty challenging, but not in the way that makes me want to give up, as I have in the past. I’m still determined to see this through. I don’t know if this strength comes from time being the bastard it is, and me feeling like I don’t have enough of it left. Or if I’m shedding an older, more useless skin that kept me from growing into someone who stands more firmly, even on shaky ground.
Whatever it is, I’ll take it. Because I’m still holding strong, and I’m still carrying two pockets full of hope.
That said, this week has been full of many emotions, for both me and my son. I feel deeply that he knows we’re walking this journey together. I don’t know how to describe it exactly, but I know that he’s okay with it, maybe even welcomes it. Still, it’s hard on his body because it means changing many things and bringing in new things that will probably cause some discomfort. I pray he knows I’m there to help him through it all.
That determination I have found its way into the smallest details this week, from setting up the binder to revisiting old strategies.
The Work This Week
Ok, so the binder is all set up. Well, kinda. I feel like it is missing some sections that I will add later this week. What started as a collection of information and materials that was to be specific for this particular path in his life has turned into something that will carry the whole of his life. Nothing can hold the entirety of his existence, but you know what I mean; a binder that can serve as a map, a record, and a touchpoint for those who care for him. I want this big binder to be something that I can give to his caregivers (whenever we get some), his grandparents if he goes for a visit, friends, case workers, etc. I want it to be something that I can pull sections out of to help me with providers and therapists. I especially want it to help guide us on what has worked and what can be improved upon in areas that extend beyond what this binder was initially for.
Alright, so the binder is semi-complete then. But it did what it was supposed to do for the first week. I journaled daily about my son’s moods and what we did throughout the day. I documented his medications and supplements. I wrote about the activities we participated in and how he did during them. I even wrote about the weather just in case his regulation or mood was impacted by Mother Nature.
There were no appointments for him this week, but I did spend a lot of time writing down and researching the type of appointments and providers I would like for him to see and the ones that really needed to see. I made a goal that over the weekend I would get into jotting down phone numbers, exploring what options we had, did our insurance cover many of the things we felt he needed, and what would be the cost of those they didn’t cover. I’ll begin to make the calls on Monday.
Getting back into Spelling has been slow process. Not for lack of trying on both our ends but because my mama has moved in with us and I am trying to get the house reorganized for a new body to inhabit this space. So, it is a giant mess around here. I find myself to be completely undone within too much clutter, which my husband finds odd considering he finds my office and wherever I work to be in a constant state of disorganization. The truth is, it looks messy and wild, but there is an organization to the mess. It is purposefully chaotic.
This? My house right now? No. It’s too much. We tried to Spell multiple times this past week, and it was a disaster. Nah, I set a goal to start this up on Monday, which gives me three full days to get this house back to where it was.
I told myself I was going to report new resources this week, and I don’t have too many to share. Last week, I briefly talked about my son’s diet being largely responsible for much of his mood and behaviors. It was time I started to address these issues for good. So, definitely the hunt for a good, capable, and open-minded GI doc is on the priority list. In the past, we tried many diets, I wrote about this last week and that how some of these diets actually appeared to work but we couldn’t keep them up for many reasons. One of those reasons being, I questioned if what we were seeing was improvement because of the diet or if it was because of something else we were doing.
Now, in my Big Age Era, I think it was largely the diet, because I feel that many of his issues are stemming from what goes into his body, as well as what cannot come out (if you get my drift). Other issues are at play here, but this is what I decided I needed to address first. In addition to opening his world up with communication. So, I am tackling diet, digestion, and communication first. I feel that other things will begin to fall into place if I target these areas first.
The diet that I think helped the most for him in the past was GFCF (gluten free, casein free). Now, I am going to be honest and tell you that I don’t know the ins and and outs of why this works for many people nor what the hell gluten and casein is. We are unable to test my son successfully for celiacs and if I am being honest, I don’t know that I believe this is something that he has, but I do think that he struggles to digest gluten and I know he got issues with milk. As do many Black folk, but we be downing dairy like our lives depended on it. Our issues aren’t because we are casein intolerant, but more that we are lactose intolerant. According to many studies, lactose intolerance is more prevalent in us, ranging from 65% to 80% struggling with damn milk.
So, while I don’t actually know what the impact of gluten or casein is on my son’s body, I know that he loves the fark out of bread and milk. Both appear to give him discomfort and removing them from his diet, appeared to ease that discomfort. I am no doctor, just a mama, armed with journals and notepads full of notes and questions.
I damn sure cannot afford maintain GFCF options within our grocery budget. Not to mention, much of it is nasty (sorry y’all). It was hard to find alternatives to his favorites that he liked. There are many more options these days, and I am going to add those in, but I don’t think we can go all in on it.
That is when my reading and googling sent me down this rabbit hole that I couldn’t even replicate if I tried. I stumbled upon digestive enzymes. And not just any kind, ones that would aid in the digestion of gluten and dairy. I couldn’t tell you how I found Houston Enzymes, I really couldn’t. I signed up for a free account so that I could read through the Enzyme Basics and other articles the site had on digestion and how enzymes worked. I decided that this would be something I wanted to try for my son. They have enzymes that aid in the breaking down of gluten proteins as well as casein. My thought process is that my son wouldn’t have to give up his favorite foods if he could digest them properly. I had also read somewhere down this same rabbit hole that most didn’t have celiacs, but they had issues breaking down gluten to the point it just sat within the gut and that could cause a host of issues beyond the constipation it often causes, that whole brain-gut thing comes to mind.
After spending some time on Houston Enzymes and looking into many of the sources included in the articles. I ordered some. Through Amazon. Cause I had a gift card. Next ones, I will probably get directly from them. I decided to ease into giving him digestive enzymes slowly. Starting at one time per day before one meal. I did this the entire first week. We bumped it up to two meals yesterday and will continue that for this week and then up to three meals next week and beyond. I know in talking with a few other parents who have gone this route, they take enzyme breaks, and this can occur at about 3-6 months in. And during these breaks they then give their children gluten free options. I don’t know how long their breaks last. I wonder if it is a month or so. I will get more insight into this as I go along.
Probiotics are on my list of things to add, he’s been on them in the past and I liked that he had them, but back then I was just doing things and not really taking note on how he appeared to feel while on them nor was I documenting any mood changes or anything like that. I don’t know when I will introduce the probiotics. Probably when I feel he is doing well with the enzymes.
So, for this week’s new resource, it would have to be Houston Enzymes. We chose the TriEnza capsules. We are able to open the capsule and pour into a small amount of juice so that it is easier for him to take. Apparently, the key is to find enzymes that contain DPP IV because these will breakdown the gluten and dairy as well as other proteins.
I see this as more than just a diet change, it’s about easing his body’s load, making more room for comfort and calm.
I must add this disclaimer: this is part of our family’s journey. I am documenting because I feel it could help someone, but I don’t want y’all to just do anything that we are doing just because you read it here. Hell, this might not even help. It could be some bullshit. Or it could work but it be a shitshow for your child because your child is different than mine. I don’t know. And you don’t know either. So, use what I share is as information for you to note, and then research on your own. If you ever read something here that you are like “hey, I think I want to try that.” Learn about it a bit more, consult your doctor if need be (I talked with my son’s current GI who is hours away from us now, hence why I am on the hunt now) and he was okay with me giving my son the digestive enzymes.
Bottom line, I ain’t no damn doctor. Don’t be taking medical advice from me all willy nilly. I’m just a mama trying to figure out what might help. This is part of our family’s journey, shared here because maybe it’ll help someone else, or spark a new idea. I am just sharing a bit of the inner workings of my mind and parenting. This is a process I have gone through multiple times. The late nights, reading and researching, jotting down things, trying things, seeing how they work…ending them when they don’t. Wash. Rinse. Repeat.
What We’re Noticing
Alright, here’s the nitty gritty. The stuff you’ve been waiting for. You want to know:
HOW HAS IT WORKED?
It’s only been one full week. It’s been a disaster!
Nah, just kidding. But seriously, it’s been a challenge. We are trying something new, though not super drastic. We just added an enzyme to one of his meals. The one that would contain the most gluten and dairy. His other meals of the day were GFCF, which is pretty easy to do with meat and fries, lol.
I remember from the times we went full GFCF that there was this period of…let’s say, incredibly challenging behaviors. Like it was some kind of withdrawal period. But this came after being on the diet for about 2-3 weeks. The kid has only been taking these for a week and it feels like he’s in that period. I will say that I have noticed that sleep is a big factor in behavior. He wasn’t getting much of it prior to this week. And while he still struggles with sleep (something we are actively addressing), he did happen to have more restful nights. This wasn’t entirely due to the enzymes though. This was part us either giving him a bit more of his sleep med or staying with him in the living room until he went to sleep. Or he would come into my room and sleep in my bed after his dad had left and I was up writing for Substack.
But it could also be partly due to the enzymes though. We would find ourselves doing the same things: more meds, staying the living room with him, allowing him to lay in our bed…and he would fight that sleep hard. He still wouldn’t go back to sleep. This past week, over the last 4 nights. He slept. Even if he had aids to get him there. He slept.
And his mornings were noticeably calmer. He had several moments of not calm, but overall, a bit calmer. The afternoons are still pretty active and full of challenging moments. The evenings are when he comes alive and it can be pretty rough.
Now, even with the rough periods there are some small victories. He is grabbing his iPad more. He had stopped using it for a bit. He is opening his Proloquo2Go more often and he is requesting more food and drink items. I feel he is easing his way back into expanding beyond the food and drink requests like he usually does, but what makes this time a bit different is that he is actively seeking out the iPad. He is determined to find that app and he is noticing the new food buttons added on there. I added a brisket button not too long ago because it is Hammy’s BBQ season and we are going to be eating a lot of it. I didn’t mention the button to Aidan yet. I honestly forgot to. I added it in the middle of the night one day. Aidan would have seen the button added, however. Hammy made some brisket the other day. The following day, around lunch time, I was working on a project, and I overheard Hammy with Aidan in the kitchen. Hammy asked Aidan, “oh you brought your iPad, what is it that you are wanting?” I heard Aidan’s iPad go, “brisket. Cookies.” And his dad was like, “whoa.” His dad was so excited and so was I, because it isn’t often that his dad is home to get these moments of communication after Aidan has abandoned the iPad for a bit. It was like he was getting to witness him communicate for the first time. It was beautiful.
Hammy said that he would get him some brisket but that he didn’t think we had cookies. I told him that we did have cookies, I had bought them and put them in the pantry. I didn’t think Aidan noticed them, but apparently, he did. I also noticed that he doesn’t tend to request things he knows we do not have. He will look into the fridge or pantry and then he will hit what he wants. This was a big win for us, but especially for him.
His energy when he is awake though. Whew, chile. I can’t keep up.
What I’m Learning (or Holding)
I’m learning that I need to allow myself to be okay with the parenting of my past. I have lived with so many regrets. I’ve felt like I’m trying to rectify them through the creation of Fidgets and Fries, but I haven’t actually done the work of forgiving myself. I know I’ve become a much better parent to my children, and I’ve been working on myself for well over a decade. But I still haven’t given myself the grace I know I deserve. It’s just not easy. And this journey is opening wounds I would rather keep closed.
I am pissed because of the things I didn’t know. I feel like I should have known them. I feel like our systems failed me. They didn’t give me the opportunity to learn about myself or give me the space I needed to be the best parent to my children. I felt so much pressure to have them be socially appropriate. I allowed myself to get caught up in changing who they were or making myself smaller to fit into the mold that society gave me.
Part of me feels that if this journey, this work we’re doing with my son, ends up being successful, it will break me. I will feel immense pride and accomplishment for my son. I’ll be so proud of him. And I’ll feel heartbreak for not knowing what I know now to have helped him sooner. How many years has my son struggled? How hard has his life been because he couldn’t reach me?
I know this isn’t the best thing to think. It’s probably too hard on myself. But I’m being realistic about the feelings I’m having, even if they’re not grounded in reality or fair to myself.
This Week’s Intentions
I am committed to working not sitting with these unfair thoughts I have placed on myself. I don’t know that I will have much success this week, but I will try.
That binder will be finished this week if it’s the only thing I do this week!
Spelling must begin on Monday.
One thing that I didn’t mention at all, is to be more intentional about self-care. I have been slacking on this front, but I need to get it together.
We are up to two meals with enzymes, so I am sticking with that. Hoping he gets more sleep this week.
I will keep documenting as we go along.
In Summary
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The binder is a living document: daily notes, moods, meds, and plans.
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The house is getting reorganized so we can get back to Spelling.
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We’re exploring digestive enzymes (Houston Enzymes TriEnza) and easing in slowly.
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My gut tells me: diet, digestion, and communication are our first steps.
I’m hopeful. And I’m sharing it all here in case someone else is looking for a new starting point, or just a bit of company on this winding road.
The End of this Bend
I don’t know what next week will bring.
But I’ll keep writing.
Not everything will be said. Not everything should.
But I’ll keep sharing the shape of our becoming.
