Friday, March 7, 2014

I Need To Stop Using My Autistic Kid As A Science Experiment



(originally written & published on March 7, 2014)


This might be a somewhat controversial post, but whatever...here goes...

Sometimes I have to stop treating my non-verbal ASD kid as a science experiment.

A couple of times a year I fall into the same trap.

It happened again this week. Kyle has been a bit rough this past week or so. Mostly it has to do with the breath holding....which in my mind seems to have gotten worse the past few weeks...it's more manic...and when he's doing it in that manic way, he's just not there, not present at all.

At my mom's house for my birthday dinner on Tuesday Kyle was sitting at the table reading a book for the whole dinner.  If it wasn't for the breath holding we'd be thrilled!  But the whole time he's sitting there
he's holding his breath and pushing his fist against his jugular and making all the manic breath holding sounds and he's not really there.

So Tuesday night my brain goes back in the Rolodex in my mind and thinks "when was he holding his breath a little less?  what were we doing differently?"

And immediately I remembered that one of the reasons he started taking klonopin back in the summer of 2011 ("the summer of rage") was cuz his psychopharmacologist thought it might help with the rage...and the breath holding.

It definitely helped with the rage, but the breath holding remains...but my brain thinks it's gotten worse lately...

This was my internal conversation with myself on Wednesday morning as I'm lying in bed...

my thoughts...
"maybe he needs a klonopin dose increase?  well I can't do that without talking to the doc. but what can I try today  to see if he has a less manic, better breath holding day?  I know. I'll adjust the timing of the doses. the doc always said we could do that without consulting her. maybe I'll give him more in the morning and then wifey will give him his second dose after school instead of in the evening. maybe that will mellow him out a bit..."

So Wednesday morning I did just that. Gave him more before school and wifey texted me after school to see what I wanted her to give him.

ME:  "Give him his evening dose now. How was his day?

WIFEY:  "Rough day. He was hitting everybody and agitated and had a pee-pee accident."

Then the guilt sets in.

My thoughts...
"Was that my fault?  He hasn't had a pee accident in weeks. Could one morning with a slight med timing tweak have caused his rough day?  Or is it a coincidence."

I get home from work Wednesday night or hear that he had a slightly better afternoon but still pretty rough.

ME:  "Was the breath holding any better?"

WIFEY:  "No not really."

So did I quit while I was ahead and go back to the old dose??

No I doubled down. I looked through our overstuffed medicine & vitamin cabinet....

....and thought to myself.

"what else did I used to give him for the breath holding?  oh yeah vitamin b6. there was all those studies you read on google saying it helped babies & toddlers with their breath holding spells. But why did you stop giving it to him?  Cuz I thought it wasn't working...plus I also read on google that b6 might suppress appetite and he was starting to lose weight again.  but his appetite is much better now. And maybe it was helping the breath holding a little cuz it wasn't this bad when he was on the b6."

So Thursday morning I again gave him more klonopin before school and this time I also gave him a b6 vitamin.

And he had an even worse day at school and at his after school activities. And he also had a poop accident which are even rarer for Kyle than pee accidents. He hasn't had a poop accident in 4-5 months maybe.

And when I got home from work this happened...


And again the guilt sets in.

"Coincidence again?  Or did the b6 ruin his day?  Does b6 cause diarrhea or constipation?  I gotta google that."

Today is Friday and with my tail between my legs I went back to the original klonopin dose and time of day and no b6.

That's all I really wanted to write about.  Basically it is SO HARD sometimes to not treat him like a science experiment when he's non-verbal and can't tell us what's wrong or what's bothering him.

I can't tell you how many times over the years wifey or I has said, "maybe he's in pain...maybe he's got a headache...give him some Advil and see if that calms him down" (or changes his mood or whatever)  and sometimes it would and sometimes it wouldn't.... there's no rhyme or reason to it...

I must say though that since we abandoned the bio medical / DAN doctor approaches and since he now has epilepsy I think we are less science experimenty on Kyle...we don't go "rogue" as often.  For the most part, the epilepsy doctors tell us the dosages and we follow to the letter of the law.  Like I said, it's only 2-3 times a year when I go rogue and experiment with a vitamin or a fish oil pill... 

But when I look at my vitamin/medicine cabinet and all the stuff I've bought over the years on the advice of a DAN doctor, or google, or one of you Autism Daddy commenters...so many vitamins, and minerals, and supplements...we were a lot more expermienty back in those biomedical DAN doctor days...

My brain is saying...
"But no regrets!  Onwards & upwards!"

Praying for a good news text from wifey after school today...  And I guess I'll have to live with the breath holding insanity... I'll live with it until it gets worse or until I can't take it anymore...or until I forget these 2 bad days and try this same exact  thing again 6 months from now...

"Think happy thoughts!  End this post on a positive note!"

The weather is gonna be above freezing this weekend!  That's positive...  Woohoo!

OVER AND OUT!

The end!


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28 comments:

  1. Ugggh! I feel you! My son is 4 non verbal, and the headache guessing sucks. Other things people don't think about because their child can talk. My lilman fell yesterday and today he's limping, is it his anlel, knee?who knows. It sucks. Hope your guy has a great day today, it is Friday after all!

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    1. I remember those days, wondering what hurts? What was wrong? Why was he limping or holding his arm a certain way. I know the heart ache. Luckily my son can talk now. He didn't talk until he was 5 years and a couple of months. It was very hard for him and me as a mom. Even after he did speak there were things he didn't tell me. Did he not know to tell me? The first day of 1st or 2nd day I actually sent him to school with the paper stuffing at the end of the tennis shoe. He came home limping and I asked him what was wrong with his foot. By this time he was able to tell me that something hurt and he said it hurt but he didn't or couldn't tell me why. I didn't realize why until we took his shoe off to examine his little foot. lmbo :( Funny but so sad. Praying for all of these familes <3

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    2. My mod to severe son didn't start saying words til he was 4ish and at age 10 I still play the guessing game with him. At 4ish he was given the med respidal or resperidone? *it's the one that causes major weight gain for a lot of kids taking it and he gained a ton within a few weeks and he got high blood pressure from that* BUT I believe in my heart it was that med that for whatever reason did something in his brain and it is why he started to speak. I was terrified when the Dr and I took him off it he would go silent again but thank God in Heaven he didn't* He will not tell me if he's in pain but he acts out. He has always gotten blazing ear infections and is on set 6 or 7 of ear tubes. They fall out within a year and as soon as they do he's got an infection. The only way I know about it is if he's rubbing his ear/s or if he comes and points into his mouth and tells me he's got cooties in his teeth but it's very seldom he'll do that. He's the same as me, when he has an ear infection it makes his ears, teeth and sinuses hurt too. He broke his leg in Kinder and 3rd grade at school. In Kinder he refused to walk on it but barely cried. In 3rd he screamed and screamed as it was a really bad break like the one in K..it went slanted up and down the bone rather than across again. That was the only time he ever responded verbally to pain.
      AD, I have also given him Ibu in case he was in pain or meds to help him have a BM if he didn't go that day because he has always suffered from severe severe constipation issues. He can speak now but I have to ask a million questions and half the time he can't answer a yes or no question correctly. Don't beat yourself up too much, AD, I don't view you going back to see if something will work this time or better as using him as a science experiment. Bodies change and sometimes one thing will work when a few years ago it didn't. hugs..Be kind to yourself, you're a wonderful husband and daddy and you're trying to help your son. .

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  2. Try not to guilt yourself too much, man. No one can blame you for trying to make his life better and more comfortable. Everyone knows that sometimes it gets worse before it gets better, and if he's non-verbal all you have to go on are his behavioural cues and biology. It's when you STOP trying that is a bad thing, in my opinion. You love your son, you'd never do anything to intentionally harm him. Anyone with a brain can see that. Experimentation is the only way we figure anything out...and it's usually by mistake. I'm just random ASD kid mom out here in the universe, but I support your decision to change it up once in a while. You're his Pop...you're always going to try! F@*k, what else can you do?? It's not like the doctors even know what's going on when it comes down to it, right? It's all good.

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  3. It seems hes mad at something. Our travis will throw things when hes really upset. Hes thrown himself on the floor too. We took him in and hes on a mood stable drug at night. Its helping but theres times its back to the old travis. I wish you luck in finding his way out of the holding the breath thing. Thats got to be very scary.

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  4. I have a 9 year old daughter with Asperger's Syndrome. She CAN tell me what hurts and sometimes what is wrong, but my days, and my mind work exactly like what I read above. Always trying to help the rage, behaviors, sleep, etc. What can I change? Call the doc again or not? Always waiting for the school to call to report a behavior incident. We keep trying.

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  5. This is so me-- with vitamins and supplements. I keep a log and look for patterns -- it's so hard. I think I remember reading that your son does less breath holding when eating. Would it help to keep his mouth busy? Like with a chewy tube or gum? I wouldn't want to encourage something that would bring about choking, though. The chewy tube is so big, though, he couldn't breathe it in.

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  6. I think living with autism is just one big experiment. Even with everything that is known there is so much more that is not. Add in epilepsy, breath holding, etc. and we're talking major knowledge deficit. :P Being the indecisive person that I am; I flow between just being in the moment, trying to be my boys' comfort <3 and fixing the moment by any means necessary. :/ In the end we're all just trying to do our best. Even our kiddos. Happy Friday! :)

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  7. I get this I know I really do just keep pushing forward:)

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  8. I feel the same about my boy. When he has had a bad day at school we wonder what we did, or missed or could have done to avoid the pitfall. It is a never ending cycle and hard on everyone. Hang in there. We all have done it and it is because we just want our son, daughter, loved one to feel ok. Try hard not to beat yourself up. Your perseverance inspires we as a dad.

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  9. I am crying as I read you post . It is so hard . I pray things will get better . Please stay strong. It is so hard to see our child suffer . I have a son with Autism too

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  10. Here's something to try... no meds required... it helped my 8 yr old son's anger issues... they almost completely went away! Get him a TRAMPOLINE! Ours is a 12' with the good safty netting that attaches directly to the bounce mat... (Walmart.com, $350.00) so there is no way for them to fall out or get hurt on the springs. He uses it every day and his aggression has almost completely gone away.

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    1. I also want to add that the trampoline is a social skills tool as well... Anthony made his first friend one day while playing on his trampoline. And every day after that, Brandon came over to play with ANthony and Anthony learned how to play WITH another child (not just along side of them)

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  11. Yup. I hear you. I inderstand. I could have written this. I do it too. I have a box of supplements and biomedical containers of capsules and I go back through my log of meds and situations and wonder what changed and what can iv give him to change our back then the self doubt when it doesn't work.

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  12. I get it. Sometimes we might have something figured out for a bit then it changes. The kids will always grow and change physically and what worked 2 months ago might not work today. That's hard.

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  13. You are not using him as a science experiment.You are a loving dad who has to be hyper-vigilant because your son needs you to be. I think as parents of autistic children, we have to problem solve constantly, and we are the only ones who are experts on our kids.

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  14. I feel the same guilt but for the opposite reason. I choose to not medicate, to ignore all the suggestions that were made to me in the late 90's. I didn't want my sons success based on a magic pill unless there was a diagnosed "illness" the pill was treating. Some days I wonder if my choice has prevented him from meaningful learning experiences; for example, if I gave him meds would he be able to read and write at a more functional level by now or tie his shoes and button his pants. I guess it's one of those "dammed if you do and dammed if you don't" moments. So, we buy books on CD, slip on shoes and elastic band pants. Thankfully, despite my lack of medicating he is an affectionate 17 y/o who learned to communicate and has a personality that keeps everyone smiling and repeating his witty statements years after meeting him.

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  15. I am going to jump on the bandwagon here. It is what we have to do when they can't tell us what is wrong. And like Tracey said, you are damned if you do and damned if you don't. If you don't try something to change up the breath holding, isn't that neglect? You just muddle through and do the best you can and try to make things better. Don't beat yourself up for trying.

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  16. His breath holding is him stimming!

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  17. Does giving him a pain reliever affect the breath holding at all?

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  18. Yep, no rhyme or reason. Not always, but at least half the time he starts smacking himself in the face...hes 6 and nonverbal, but starting to say a few words!

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  19. You're an amazing family & sound a lot like our family.

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  20. I feel this way too.... I think am I really doing enough? My kiddo is on Prozac in the morning, clonidine, Neurontin, and melatonin at night and he still doesn't sleep the best... he has Periodic Limb Movement disorder on top of his autism, basically it's Restless Leg, but for his whole body and wakes him up a ton... but the "right" dose for that causes more anxiety and we don't want him on too much of the Prozac either.... such a damn juggling act and since he can't tell me how it all makes him feel, I'm playing in the dark....

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  21. Completely understand. Our daughter is non-verbal too (well I always explain that she speaks, but in a different language - we sort of now know what her noises mean after 19 yrs). We never know if she is in pain. She rarely shows discomfort. But it is hard to believe she has hasn't experienced pain in her 19 yrs. Maybe she has a high tolerance. In any case we will find out soon as she needs 3 of her wisdom teeth cut out. That is going to be fun!

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  22. I have a friend who's daughter is 3 and one day she woke up and said that her neck hurt and immediately I thought about my boy, almost turning 5 and non-verbal and what if he ever woke up feeling like his neck hurt, how would I know? I wouldn't so maybe he would just be extra irritated that day to show us that something is up. So I guess I'm not telling you anything new here but maybe Kyle's been hitting/biting/peeing 'cause he's in pain somewhere (??)

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  23. I hope it makes everyone feel better just reading your post, as well as the comments, to know that we're all in the same (albeit different type!) boat. All we're wanting is to help our kids out! And that's where being non-verbal is the toughest, when they can't tell you what the heck is wrong. As much as I post to FB about it, and get lots of sympathizing comments, I know no one TRULY understands how tough it is besides those of us experiencing it first hand. Hang in there. :) Your blog is awesome!

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  24. I am not sure that what doctors do is all that different from what you are doing. Doctors frequently suggest certain medications based on past experience with other patients. If it makes things worse, it doesn't mean they tried the wrong thing, it just means this patient responded differently.

    If you had tried something that helped, then you would be able to tell the doctor, and maybe even improve your son's symptoms.

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  25. My grandson has ASD and hardly verbal. I have seen a screaming mom carrying her breath holding baby around desperately calling for help as the baby turned blue in her arms a passing doctor stopped her and blew hard on the baby's face. That was all it took for the baby to break the breath holding and gasped back for air. It looks like a reflex reaction to the blowing at his face. I don't even know if this info will help.

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