(for the record, this post is personal. Long. I am not asking anyone to read it. This is for my own joy. If you take joy in it… well… be my guest. For the record, it’s long enough that I don’t feel like editing it till later. You’ve been warned)
My husband and I had a fight yesterday. It wasn’t an ugly fight. It wasn’t even an ugly cry fight. It was more of a run and hide and throw random snowballs fight. I was fighting a terrible stomachache and didn’t want my husband to know I wasn’t ignoring him on purpose. He threatened to tackle a project that had been overwhelming me and accidentally throw away something that meant something to me so I’d better come help.
It was all very lovey dovey.
I even called my mother in the middle of it to tell her I just wasn’t making it as a wife anymore and she’d better come get her deliquent daughter. It was Bryan’s idea. She hasn’t called back. I’m not sure if she’s over being dizzy from listening to us…
(My husband wants everyone to know no mother-in-laws were harmed in the making of this fight. They never are. We love them)
We fought about whether to ask the church to let us have a therapy animal here in the parsonage. We fought about whether our daughter should go to sunday school or I should stay home with her so it was easier for us to find teachers for her class (hubby’s the youth minister in charge of such things). We argued about whether she was integrated at church well enough. I screamed at my husband because I’d messed up my dish soap recipe by using the hard water to make it and it. was. worthless…..
All this because I thought I was going to come in with a sweeping plan that made my house feel as happy as a hippie commune that follows Jesus. Bring on the Patchouli!…and, apparently, the transitional, bitter catfights.
The past two and a half years have been spent trying to keep up appearances of normalcy. As far as autism was concerned, I parented in a way I didn’t like to keep up appearances of being like everyone else, and wasted time doing things I knew half-worked, and half-didn’t. Keeping a diet method that only worked halfway and giving up one that worked 60%. I even got as far, at one point, of eliminating all autism diets because the doctors made fun of my “tinfoil hat”– my tendency to treat my daughter’s neurology and life to peace using diet and environment. Now that I’m a complete tinder box, I’m transitioning more to my real self, and my real ideal of treating my daughter. The very spiritual, cockeyed version. You should be warned. This me is a very real me. The one you can really, really offend.
The one where I think God planned this whole thing specifically from the beginning. The one where I met a girl with Down’s Syndrome at the doctor’s office as an elementary schooler and didn’t understand why her brain was stuck on hello but knew she was genuine and alive in there. The one where I spent several months afterward obsessing about special education, and wanted to be a teacher, and learned different sensory tools and education methods. The one where I went to high school and got to shadow and volunteer in my small town special needs classrooms and developed a precious friendship that lingers today. The one where autism was always fascinating. The one where my music teacher was floored at the progress some kids with autism made on chelation because I mentioned I had a lot in common with people who have aspergers.
The one where I was a psych student and learned a lot about neurotransmitters and scientific research (or so I thought at the time). The one where I believe Jesus sent me on a journey to be a college student who learned a lot about autoimmune issues from a very allergic vaccine choice mother in 2004–ish. The one where someone randomly hired me to be an aide in a school seventy miles away in a behavioral disorders classroom because they were… desperate. Welcome to the world of BD classes, right???!!! haha…poor things
(tip: Don’t use people as BD aides when they have movement disorders and can’t do motor planning to get out of danger. Also, when you get bored with seeing them beaten to a pulp by fifth graders, people with dystonia and uneven gait make very, VERY poor canes for children with ataxia telangectasia and chemo nausea.)
The nagging feeling that I could have a disabled child in danger if I stayed in a certain relationship. The prompting to ask the one I’m in a relationship with, how he’d feel about having special needs kids on purpose.
The camel farm in Germany where they saw progress in kids on Camel’s Milk. The friends I met when I came home who did GAPS for their own, autism unrelated issues. The nagging feeling that God was telling me something.
The baby who didn’t cry when they gave her a Vitamin K shot at birth. Or when she was hungry. Or when she was tired.
The family I lived with in Germany that told me about a special (Vojta) therapy that trained their “absent reflex” baby to a walking, coordinated teacher in training. (Du bist der Hammer, auch) and the German Vojta therapist that walked into my house two years, one wedding, and a baby later. (Vojta therapists are so rare in the United States that people travel hundreds of miles to see her. It was more than coincidence). Watching Vojta move my child. Reading Wikipedia articles that mocked the therapy. Reading articles online that called it torture and abuse. Watching my child succeed. Watching a child with severe Spina Bifida learn to walk on time. Learning to watch real life changes and not just read research. Seeing the joy of our friends who did GAPS. Getting to participate in a class on autism because of my baby’s disorder, and earning a stipend from it that rounded out the money I couldn’t make as a stay-at-home mom with dystonia.
I say that God hand-wrote my daughter’s chromosome, and that she was designed. I also say that she has a disorder that needs treating. God gave us a good life where we saw his leading in this whole process. And no, he didn’t keep us so shielded from reality to the point that life was painless. The chromosome that He gave her is not evil. But it is mortal, just like the rest of us. I believe he picked us for this journey, but not as a special trial. It has simply been a window into the world of God that I’ve been trying to see for a long time.
The good in our life has simply been the experience that we knew . He gave us just enough of HIM that we have always felt him. That is the kind of tin-foil hat person I am. Each of these encounters were the direct result of a path I took in my “indecision” about who I would be when I grew up. I thought I was going to rush in and rescue some mother who couldn’t handle special needs life because of all this preparation.
Yup, thought I was prepared for this. (Funny). And I have been very, very, very blessed.
But reality is not me sitting here glowing every day, joyful at all the progress of our natural therapies. It’s interrupted by my embarassment and rebellion. It’s interrupted by my tendency to think other people need me more than my daughter.
Did I mention we’re restarting the GAPS protocol?
I didn’t have any miraculous results last time, but we didn’t remove a lot of toxins last time. This time, I’m trying harder. I’ve given up lots of chemicals I didn’t realize I was using. I reference this study from time to time, and I want to mention my philosophy on it with the fair warning that my philosophy isn’t very scientific. You should read the study for yourself.
And while you’re over there on the dup15q site, please donate to them. We can’t afford it, and I depend on their research. It is unique and specific to our daughter and every study they come up with helps me make progress in treating Anneliese. Yes, progress. Yes, she’s nonverbal. Yes, I spent a bunch of time two days ago griping about failure. But progress. I know which things I can do to increase the likelihood of a stim based on their research, and I know how to reduce the likelihood of a stim based on their research. I use general autism research. Dup research tells me important things like how GABA works in our kids and how maybe adding GABA to calm kids like you do some kids on the MAPS autism protocol, may crank up the extra GABA-A receptors in our kids and cause gobs of chloride to flood the cell and tons of glutamine to overload the cell’s response. It was a theory, based on their research.
But this is a different study.
Those who have died, who have Dup, and whose families were generous enough to take time in the first 24 hours after their children died to have their child’s brain tissue donated to the autism registry (bless the families, we depend on you) frequently have buildup of PCB 95, a currently banned toxin, in their brains.
Things that we are no longer polluting the environment with.
Things that no longer show up in our brains – because we stopped using them when we found out they cause brain damage.
It’s an interesting piece- a) it argues that we should limit our kids’ exposure to toxins b) it didn’t come close to tackling mercury, which is such a hotbed in the vaccine debate. and c) this is a toxin that we supposedly aren’t exposed to anymore in significant amounts.
… which makes me wonder-
how many things that don’t build up in our brains, do build up in theirs?
how many safe substances are unsafe when your brain becomes a lockbox for all the things the body doesn’t digest well?
….maybe the tinfoil hat ideas that Dr. Campbell-McBride invented for environmentally affected individuals will take a little extra thought on my part?
I tried the diet three years ago. I’ll never forget the irritating event that started it. The adorable lambie plate that we used to serve her her meals got smeared in poo. She had… forayed into the realm I’d been dreading, and she was two. The kitchen got cleansed, and we started GAPS… poorly.
I read nothing in the GAPS book, never even read the GAPS guide, and tried to piece together the ideas in the book based on online arguments – you know, especially the kind that included page numbers – as best I could. We figured the preservatives part didn’t apply to us, as we knew what our daughter’s chromosome disorder was, and environmental toxins probably didn’t play a role, but surely her metabolism was messed up so we’d do the diet to straighten out her metabolism. Piecing together autism biomed in the middle of internet pharmatrolls is a really, really bad way to figure out safe, effective biomed. You’re better off reading books, the research, and other reviews of the research. Dr. Campbell-McBride is actually a lot more like our pediatrician than internet trolls make her sound. She’s just veeeeeery conservative.
And how did we fare on the diet? Developmentally, Anneliese was up and down all that spring and summer, but did well meeting some goals in that time frame. One could argue that she developed so well at that time because she was in the happy time of a duper’s life. This is the time when she learned to walk. I imagine she felt accomplished because of this and tried sign language and other things because she saw herself as successful and a winner (she doesn’t do ABA, so she doesn’t get rewards, so she doesn’t feel that way about herself anymore and doesn’t approach kids in the limited way she used to back then). Her development that summer, because of constant up and downs, was subjective. It was hard to pin down why I felt GAPS was helpful, but most of all, she stopped shivering when she woke up. That was something that happened to other dup kids in the group and when we did GAPS, it stopped completely. We don’t know to this day if it is movement or a seizure, but it normalized on GAPS and hasn’t, completely since we went off it.
…Because we moved. We became the youth minister and his wife, and so became responsible for other peoples’ opinions of whether or not we liked their food or not and whether or not they possibly thought we were punishing our daughter. We decided we’d better let other people do whatever they wanted with our child so that they would think well of us (this was our fault… it’s how we deal). We went gluten free instead of GAPS. It helped for a while, then stopped. And, while Anneliese wasn’t doing as well as before, and lost several imitation skills that she still can’t do, she didn’t shiver *as* often, so I figured I’d best put away my tinfoil hat and act…well… normal.
That doesn’t work well with autism, in case you haven’t noticed. NOTHING is normal. And pretending- along with a pregnancy, an added child to care for, and post-pregnancy worsening of dystonia/my ability to clean the house I spend all day in — has me emotionally and spiritually fried. Not to mention I’m occasionally very resentful of all those unspoken (and in most cases, likely nonexistent) expectations to raise Anneliese like everyone else.
But that’s just it. Like everyone else? She IS more fragile than any of the kids at the church. She wouldn’t be if they had cancer or autoimmune issues, but they don’t. Even if they did, nothing that helped THEM would do anything for her autism. Autism is weird. It teaches us the limits of humanity-as well as the wonder- and it’s frightening to navigate no matter where you think it comes from. As far as the duplicated 15th chromosome pieces, they DO warn us that our kids could drop dead at any moment (especially if they have seizures, which they have a hard time defining for sure in each kid). So I’ll do what I think God wants for Anneliese
Besides, I do love my tinfoil hat. I began it when I was a homeschooler and it now carries 57 satellite channels in other languages. Especially German. It’s me. And I like waking up to talk to myself in the morning (good thing, as hubby’s gone by then and I’ve got two nonverbals in dipes- so I don’t have many options). I’ve just gotta be the mom God made me.
So are we making progress? Maybe. I got word that she was super happy on the bus today. Maybe we’re doing something good… But we’ve just begun. Very few dupers have tried GAPS. Those who have, tried the diet.
We keep telling ourselves and our friends that it’s the genes, and it’ll be fine. That they don’t need treatment.
… It isn’t that simple. PCB 95 isn’t a chromosome. It’s a poison. And we should be careful what evils we allow to sneak into our homes with the nickname “dup15q”. Not every effect we see is God’s handwriting. Some -like this chemical- is human. And while God directs our paths through this life, he did not invent every ill. He directs us through a world of death to his life. So whatever a full life means for a dup15 kid, I want to go grab it. And whatever took away my baby saying Mama, or playing in imitation of her friends–
I’ve got my Jesus, his arms are around us. I rebuke you, and He’s coming for you. This is my baby, and this life is hers and his to steer… just like it always has been.