So. We’ve done a little over a month with David on his new diet. A lot of my friends have been asking me how he’s been doing.
He is fantastic.
I feel like I’m living a big, long sigh the last couple of weeks. I’m doing a lot of reflecting, mostly on how life has been the last several years. I’m relaxing again. I don’t think I’ve been able to relax this much since…I have no idea.
This is going to sound awful. I said it out loud a few days ago: it feels like Knut and I have been abuse victims. It sounds harsh, but that’s the trauma attached to it. It’s something I haven’t had the courage to say out loud before. I mean, we always knew David’s heart underneath it all. It always sounded like we were making excuses for him. But life with David was scary. On this side of his recovery, I feel like I’m honestly facing what it was.
Knut and I walked on eggs shells around him, mostly because if we asked him to do anything, or stop doing something, we had to be ready to go the the mat with him in enforcing it. If we didn’t enforce what we said, he went absolutely crazy, as though he lost all security. So we chose very carefully what we asked him to do for our own sanity. It was like everything was a fight and if we were too lazy to fight, things got 100x worse. The tantrums were physical. There were times I had to call Knut home from work because I was scared of David he was so violent.
I haven’t told many people that before.
These are the stories that parents are afraid to tell. But I know there are a lot of you out there with these stories. Your emails have been flooding my inbox.
Though David loved us just as passionately. We saw that too. We saw how he was struggling to get himself together. We saw him wrestling with himself. We took him to a child psychologist. I haven’t told many people that either. We took him to other doctors. He was extremely tender at times. We got several prescriptions that were optional to fill, and we didn’t because none of the doctors answered our questions or concerns sufficiently. Actually, most of them shared our questions and concerns, but had no other options to offer. We took the prescriptions, and just prayed over it, never getting a peace about it. The doctors used terms like “borderline” a lot and “optional” a lot. My least favorite of all of these references were “David doesn’t need these medicines, but you can give them to him for your sake.” I can only imagine what parents who deal with this full blown have to deal with. We talked with occupational therapists, asked for prayer from several people, and just tried to make it through each day.
It was like our world centered around managing David. But we had 4 other kids.
One of the biggest blessings of David’s alopecia on top of all his other issues, is that now our world recognizes that something is going on inside of David’s body that is not right. I can’t tell you how many people just flat out didn’t believe us when we started sharing David’s issues, or assumed we had no idea what we were doing as parents. People thought we just showed favoritism to David, or never disciplined him, even though disciplining him basically defined our relationship. That’s the majority of what we did. People said they understood, that all kids have tantrums.
People would tell us David wouldn’t have these issues if we didn’t homeschool him. Oh, yes it often went there. Even though he has been kicked out of every classroom setting we have ever put him in, and I strongly believe it would be unfair of us to put him in a traditional, all day classroom without medicating him (unfair to both David and the teacher). Getting to the bottom of how he learns and what’s going on inside his brain is just making up excuses. So “people” said.
But now that David has no hair, people give him grace. They acknowledge that maybe something isn’t right inside of him. I’ve heard from many people close to us say “we had no idea it was that bad for you guys.” I’m not sure if that’s due to lack of transparency on our part, or lack of understanding on theirs.
You see, before David had an invisible illness. That invisible illness has gotten so bad that it’s now visible, and people now have sympathy. I’ll admit, I struggle with some frustration in that, but mostly I feel relief.
I should state, that alopecia is not always connected up with ADHD and sensory processing disorder. Those are not interchangeable.
But I really felt there was a core issue to all of David’s diagnoses. The blood work showed that his body isn’t absorbing nutrients properly, which can effect multiple organs. In David’s case it effected his nervous system and his immune system. That is paired with a common gene mutation, that is easily treated, and his liver wasn’t functioning at full speed either so environmental toxins couldn’t be processed like other people. That’s likely why he fell apart whenever he had synthetic foods like red dye (which is has a petroleum base). While those are significant as well, he can take a pill for each of those. It’s multiple things, but it’s all connected in the area of malnutrition. This diet is centered around getting his body absorbing nutrients again, and I haven’t said much about that besides it’s hard.
But I have to tell you, I noticed a change in David’s nervous system the first week. It was small. It was more, “Hmm…that’s interesting. He had a great week. I wonder if that’s a coincidence?”
Week 2, he sat in church. He sat in church people!!! That is one thing that was especially bothersome to Knut before. Knut wanted so badly for David to sit in church with the rest of us, and David’s sensory processing just went nuts in there. He had to leave Sunday School pretty much every week for similar reasons. He couldn’t handle it, and finally we discussed the idea of him sitting back in the fellowship hall, so he could listen, but his body would be able to move at will and it wouldn’t be so loud. We made this change due to the psychologist’s recommendation months earlier. It worked really well. David could discuss the sermon and pay attention perfectly if he could pace in the quieter back room.
But on week 2 of his new diet, David came in to church, and sat down next to Knut, without any prompting. And he sat the whole service. No falling on the ground, sticking his feet in the air, rocking back and forth with his head in his hands, or needing any distraction. He didn’t need his rescue remedy, or any of our go-to oils for calming him.
That made us take notice. There may have been tears in my eyes.
On week 3 I found myself relaxing around David for the first time. I started pushing him harder on issues, when he didn’t want to do something. I started raising the bar so it was similar to what I expect from my other kids. He fought me about as much as the other kids fight me. But my fear of him freaking out was starting to melt. Though all wasn’t perfect.
David did have a small meltdown during our family pictures a few weeks into his diet because the shirt I had picked out for him had the wrong feel. When the pictures come out, only a keen eye may notice that most of the pictures have him wearing a brown shirt with stripes, and the rest of them have him wearing one of his black “ski shirts” as he calls them. They are the athletic shirts that wick moisture, worn a size too small so it’s tight to his skin, and no seams. They are basically sensory vests. We had him change so he could make it through the photo shoot. He was crying because he said he couldn’t make the itching stop, though we couldn’t find any source or rash of the itching. The new shirt stopped it.
This hasn’t completely gone away, and maybe never will. No answers here. He’s gone from needing his calming serum 2-3 times a week to 1-2 times this month. So that’s something.
My other kids are more willing to play with David now. Their fear of him is melting too. I see it in how they interact.
There’s been a lot of laughter in our house this last month.
To not live in fear? It’s worth this all. Honestly, I was so in the thick of it I had no idea how bad it was. It’s in the coming up for air that I realized how bad it was.
It’s taken longer for Knut to see this. He’s deep into harvest season now. He just isn’t around David as much. But he does see him on Sunday, where David has been the last 3 weeks in church with us. He sings alongside us, and stays in his seat the whole service, even when the option to go to the back of the church is there. But we have been living with this for years. I can tell Knut’s radar is still on high alert around David. It may take him a bit longer to see it’s safe to relax. He’s starting to recognize it, though.
It’s like David has been living with all of his nerve endings standing straight up like a porcupine, and for the first time in his life, these nerve endings are relaxed and laying flat. That’s how it feels.
But his hair loss continues. We haven’t shaved his head in 3 weeks now, and it hasn’t mattered. There’s just a half dozen little hairs on each eyebrow left, but his eyelashes still remain intact. The goal for this diet was that within 1-3 months we want to stop the hair loss. Hair regrowth isn’t on the map yet. So we know that this absorption issue isn’t resolved yet. I can tell it’s slowing, though. Before the diet/pills, the area of eyebrows would have been gone in a week once it started. The hair loss moved so fast. Now it’s been a slow loss over a month, that isn’t yet finished.
So how’s David doing? I see his nervous system behaving in ways we have never seen before. Man, that made me a believer of all this diet stuff. Talking with his doctor, we see he still has a ways to go. I’m just relieved that the first part of his recovery was his nervous system before his hair. I’d take calm, sweet David who is bald over tantrum-ing, frustrated David with a full head of hair any day.