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Friday, October 23, 2015

Dude, Where's My Manual?

Here's what I'm wondering: where is my "What To Expect" book? You know those books- "What To Expect When You're Expecting," "What To Expect The First Year," etc.

There are bookshelves full of helpful books for pregnancy, the first year, toddler-hood. There are books about how to be a good mother to boys. About how to raise a teen. There are books about how to get your kid to clean their room. About how to raise responsible kids. About how to get kids to sleep. There's probably one about how to get your kids to join a circus. There are books about every special need out there. Trust me, I've read most of them. There are books about how to get your special kiddo to eat better, play better, be better. There are books about everything. Except a book that tells me how to help my unique kids. Where is that book? Where is my manual?

Where is my "How To Parent Kids Who Have:
Bipolar Disorder
Tourette's Syndrome
Obsessive Compulsive Disorder
Sensory Processing Disorder
Auditory Processing Disorder
Visual Processing Disorder
Speech Issues
Gross Motor Issues
Fine Motor Issues
Low Muscle Tone 
Learning Disabilities
Compromised Immune Systems
Autoimmune Problems

Seriously. I know we parents all joke "I wish kids came with a manual- ha ha." But seriously, in this day and age, why isn't there more help readily available for families like mine who struggle with so much? Why do I have to be Mama Detective and find the things to help my kids all on my own, all by myself? Sometimes just by coincidence, or being at the right place at the right time and overhearing someone else's conversation. Why isn't there more help?

Jonah and I did genetic testing recently. Ben refused to spit in the tube because the idea of it grossed him out so much he almost vomited. Not joking. They can't test vomit, only saliva, so we gave Ben's tube to Dad. His results are still pending, but Jonah and my results are back. This is some crazy stuff, people. Here's what I've learned during my crash course in genetics: A genetic snp is a genetic defect. Sometimes you can have a snp that's not turned on, so even though you have the defect, it doesn't impact you in any way. But sometimes you have snp's that are turned on and are causing your body to go completely haywire. Jonah and I have a few snp's that are turned on, and that's not great. 

I got the results from our testing, printed out a report, and brought it to our chiropractor who had said he would help me interpret all the mumbo jumbo. I knew enough to know that I have the dreaded snp that causes your body to not be able to process and use folic acid correctly. This snp, if turned on, can cause pregnancy complications, birth defects, you see where I'm going with this. So I knew this going in to my meeting with the doctor. But as he and our nutritionist and I sat at the table discussing the ramifications of our results, I burst into tears. Of course. Because lately I can't do anything without crying. I couldn't even talk for a moment. I said I just feel so badly that so much of the kids' problems come directly from me. My genes have even caused all three boys to be tongue tied- a result of that snp I was just talking about. If I could have known this before becoming pregnant, I could have had the right nutrition and the correct form of folic acid that my body requires, and who knows how many less complications we would have had. Why isn't genetic testing mandatory for anyone hoping to have a baby? Just so we can prevent so many things, so easily. 

My doctor said it's not my fault, none of the kids' problems are my fault. That's easier said than accepted. I feel guilty. Stupid genes. Between Alex's and mine, whew, it's a miracle these kids are even walking and talking and don't look like aliens. (No offense, Alex. Your genes are perfect and pristine, I'm sure. We'll see in a couple weeks when we get your results back!)

I am still researching Jonah and my genetic snp's. One thing I found out about Jonah is that he has a genetic defect nicknamed "The Warrior Gene." Ok, seriously. Could this be any more completely on target with what he is experiencing? Wow. With this genetic defect, people get out-of-control angry about things most people can easily handle without being disrupted. I have watched videos of people with this genetic defect and they look exactly like how my boys act. 

I have always believed that there is some way I can uncover what is going on in my kids' bodies. Then I'll know what to give them that will heal their brains and hearts and bodies. We'll get their neurotransmitters working correctly, their guts healthy and whole, their immune systems strong. It's taken me 13 years of painfully slow research to figure out just a fraction of what is happening in my kids' bodies. I think that's terrible. And even more terrible- I still don't know what to do to help them so that they can take off the bandaids of pharmaceutical medications and heal in wholistic, natural ways. Medications aren't healing or fixing what is malfunctioning in their bodies. Medications are our bandaids to get through the symptoms until I figure out what will heal their little bodies. 

Now I have one more piece of the puzzle- some insight into the kids' genetics. I know their, and my, neurotransmitters are all wonky. Our nutritionist is helping with homeopathic remedies to get all our neurotransmitters working the way they should. I thought neurotransmitters were only in the brain- did you know we actually produce them in our guts? So if your gut is out of wack, and leaky, and malnourished, of course your neurotransmitters are affected too, causing problems all over your body. (When I was telling a friend about this the other day, I laughed because she said "You're so smart!" But sadly, I can't take all the credit. I just repeat what smart people have told me.) 

My question is why did I have to figure out on my own that we needed genetic testing? Is this The Answer to all our problems? I don't know yet. But it is something significant. Why didn't a doctor somewhere along the line say hey, I think you should get some genetic testing done to see what we can help through non-pharmaceutical routes. My chiropractor said to me that this is cutting edge stuff. That what I chose to do with this testing is not the norm yet. He asked me who else I know that has done this specific form of testing. I said no one. He said see? He told me once this type of test is able to make money for some company, some day, then we'll see healthcare start leaning towards this type of testing. Until then, we're left to figure it out on our own. Crazy.

Am I asking too much? Is it too much to demand that someone, somewhere have a wealth of information in one place to help complicated cases like those that live in my house? Where is that person? Where is that book? It should be like a "Choose Your Own Adventure" book: if you've tried A, B, and C, and your kids are still having rages, try D! There's still hope! And you don't have to reinvent the wheel, trying to figure out where to go from here, because someone went before you and has another idea you can try! Parents should have some place to use as a resource for finding help that is effective. 

I remember reading books about parenting even before I had kids. I studied children in college and grad school. I had a ton of experience with kids. I thought I would do all the good things good parents do, and my kids would respond the way 'normal' kids do, and we would all grow up together happily. Time outs- a minute for every year of their age. Present beautiful, healthy meals that my darlings would devour. Teach right from wrong. Play and love. All the things you are supposed to do. But from the very beginning of our Child Journey, I realized whoa. We've got our hands full here. This whole parenting thing is not going according to plan. From the time Ben's water broke- 12 weeks too early, and probably because of that damn genetic snp I have- I knew our journey would not be one found in a self-help book on our local book store's shelves.

Part of the problem as I see it is that information is constantly changing. There are new things being discovered and tried all the time. But I think there has to be some way to have information in one place for parents who struggle like we do. Can anyone really comprehend all the zillions of interventions we've tried over the years? I mean, zillions. I always feel like I am not an expert, I don't know much about stuff. But if a friend asks me about a special need, or therapies, or interventions, or whatever, I surprise myself with how much I know. It's only because we've tried so many things. And so many things haven't worked, so I keep looking for the next thing to try. 

As I was sobbing in our chiropractor's office about my crappy genes that have been passed to our innocent babies, our nutritionist said "Just think if you hadn't done all the things you've done for your kids up to this point. Think how much worse off they would be. You work SO HARD to help them." My brain knows this is absolutely true. But my heart aches because nothing seems to work. Granted, if we hadn't tried anything at all, I'm sure all the kids would be much worse off. So maybe I'm mistaken when I say so many things haven't worked, because if we hadn't tried those things maybe we'd be in an even more horrible place. But out of all these zillions of things we've tried, why isn't something working better? The boys are on some heavy duty medications. Why do they still have all these difficult symptoms?

A friend of mine totally hit the nail on the head this week. We were talking about our kids and meds. She said (I'm paraphrasing her pearl of wisdom here) --oooo I love this, it's just so perfectly true--It would be one thing if a medication took away all the horrible behaviors. If we could totally stop rages with one med. Or get our kids to concentrate as well as a typical kiddo with one med. But the problem is, we have to choose between living in absolute hell without meds, OR putting our sweet babies on meds that have a million bad side effects just to see a little improvement. The med doesn't even totally fix our problems! And now our kids are dealing with weight gain, elevated liver enzymes, high cholesterol...and we still have to deal with the horrible things that the med is supposed to treat because nothing is treated 100%. It's awful. 

That's exactly it. Those of us who have to walk the tightrope of meds have to weigh whether it's better to give our little loves obesity, high cholesterol, elevated liver enzymes, and maybe a little relief from rage (or whatever you're treating), or just let them create a living hell that they cannot control and that the entire family has to navigate. 

It's not fair. It's not easy. It's not the way it should be. Someone, somewhere, should say well, I don't know if you're into "alternative" stuff, but you could try essential oils. Or homeopathic remedies. Or interactive metronome training, brushing, or Feldenkreis. Or MNRI. You can also try medications. Or maybe accupuncture, cranial sacral therapy, or therapeutic listening. You could try developmental optometry. Or counseling. Medications are sometimes necessary, but I wish someone had told me about all these other alternatives, and the other zillions we've tried, before we went down the med route.

It's so impossible, and lonely, and dark, and hopeless, and heavy, searching for the next thing to try because all the zillions of things you've tried over the past 13 years still haven't made life tolerable with, or for, your kids.

Where's my manual?

1 comment:

Full Spectrum Mama said...

I think right now all we have is each other - our friends (virtual and f2f) who GET IT because they just do..and our friends (virtual and f2f) who GET IT because they are in similar trenches...
You just gave me a good laugh with your manual title, and that goes a long way right now.
BTW I myself am busy writing a post called "What is Dysarthria?" ...largely about WHY DO I HAVE TO TEACH ALL THE SPECIAL ED PEOPLE ABOUT THEIR OWN FIELD. Ahem. Excuse a little riled up there.
Thanks and love,