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Living with Autism

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November 22, 2011

Curing Autism

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             Early November, 2011. “Slap, punch, thump,” I hear as I trudge through the door, carrying bags of groceries. Please God. Not again. It’s been days of no head hitting. Now this, again! I’m having trouble picturing a happy ending. Once I reach the bedroom, I ask Blake, the nurse, “What’s wrong?”, as if I don’t know. Blake takes a breath and wipes sweat from his brow. He’s been blocking and re-directing my son’s fists for 25 minutes. “I think he has a headache,” he says. “He’s got a fever.” Swell. A temperature of 99.3 and up is a common antecedent to my son’s self-injurious behavior (SIB). We’ve often suspected headaches accompany fever.

Unsure if anything else is triggering the SIB, the nurse performs a quick body check. No blisters. No bruises. No grimacing when palpitating stomach, legs, arms, etc… We give 1 Alleve. Three hours later, he’s still trying to punch his head. We remove his 7 mg. nicotine patch, wondering if nicotine may be exacerbating a headache. Within 3 hours, he’s hitting stronger and faster, as if the nicotine patch had been holding back a full-blown meltdown. We reapply a stronger nicotine patch (14 mg). After all, nicotine has been helping. Within a few hours his eyes are softer. He takes a nap, probably exhausted from trying to pummel his head. Later wakes up crying. A few head hits, but easily re-directed.

Hours pass. Night nurse arrives. Multiple pro-active (using gentle voice, massaging arms, slowing transition times) and acute interventions (retraining and re-directing flying fists so he doesn’t harm himself) are used. Night meds (Leviracetam, Lomotrigine, Remeron) are given. The deep blue of night gives way to the sun. Blake is back on shift. Intermittent SIB after getting out of morning bath, but to everyone’s astonishment, SIB hasn’t evolved into what we call “crazy SIB.” That’s our code word for behavioral emergency likely to cause bodily injury and require a 911 call. Mostly, because if we’ve exhausted investigative tools our home health setting can do, we have no choice. There is no turn for the worse. We are pleasantly surprised. Figure it must be the Nicotine. But we can’t be too confident. Managing SIB in severe autism is extremely complex. You have to constantly be on top of the situation. And know the individual.

We give another Alleve. Feed him super-puree’s (Wheat Germ, Liquid B-Vitamins, yogurt, ½ gluten free banana muffin, coconut milk, Raw Protein, egg yolks, carrot juice and pineapple.) We increase doses of garlic. We apply ice packs to head and neck. We keep a 14 mg. nicotine patch on him. It’s helping. We know, because he still has a slight fever. Yet, severe head hitting drifted down to mild hip slapping. A few hours later, he’s laughing. He does a skip walk to the door. He wants to walk outside. “We may have found something that really helps,” says Blake. This is the first time we get to see if nicotine is a contributing factor in controlling rapidly escalating SIB. It will take a few more times of testing. Had it been the nicotine? Had it truly held back crazy SIB? I can’t be sure, but at the moment I’m grateful to get my son back before the SIB— like it has so many other times—takes over, and leaves us spinning and skeptical of hope.

As I pause and think, I consider that in the valleys and peaks of severe autism, there may not exist the traditional happy ending. Maybe there are only happy days; weeks or months. And unexpected triumphs.

Parents of severely-autistic children should not be lured by the seductive, almost mocking call of ‘cure autism now’ movements. For one, to say you are out to “cure autism” is vague and ambiguous. 

Autism doesn't need to be "cured." It's not a disease. It's who a person is. What needs to be treated are the unfortunate self-injurious behaviors, chronic anxiety and seizures that often plague people with autism. Being autistic itself, is not a terrible thing. Living in an intense world that differs from those around you is not their fault. We need to work more on finding enhanced supports and services and ways to sooth and sanitize the anxiety, pain and confusion people with autism deal with, so they can live normal productive lives. People with severe autism don't have to adapt to us, we should be accommodating their needs. 

Hope is lost in the chaos of finding a cure to a complex condition that has morphed into off-labeling that further complicates curing. Let’s be specific. ‘Curing’ (eradicating) seizures and destructive behaviors and elevating health, happiness and cognition in the autistic individual is a more logical, realistic goal. 

One we should strive for if we ever hope to improve the lives of people with autism. 

Kim Oakley

4 comments:

Amy said...

I too used to be lured into the whole "cure" bit. Until I realized it was taking over my life. Nick did not respond to any supplements, special diets, creams, or anything like that. After about two years we re-evaluated our approach to just doing things that Nick liked, and ones that gave us the biggest "wow" factor. ABA stuck around and we added hippotherapy which Nick absolutely loved. We do OT once a week, and give him your regular vitamins. That is it.

This is our life. Our new goals are simple. Maintain status-quo. This week we have also seen a return of aggression and SIB. He has a cold. Seems to be a going theme with him. Today we had a good day. I am glad that James is being helped by the nicotine patch, that must feel wonderful to not see his behaviors escalate. I hope it continues to work for him and that you all can finally get relief from it.

Anonymous said...

THANK YOU FOR POSTING THIS!!!

I went into great lengths to cure my child! I attended various seminars about how to fix and get rid of any autistic behavior by TACA organizations or specific DAN doctors. I had two full shelves of books on recovering autism, autism and healing the gut, stories about families recovering their child from autism, autism and different treatments, etc. Looking back I felt like I joined a cult of "warrior mothers" determined to cure autism. I was on every website, constantly researching, and spending all my energy towards getting autism out of my childs body, whatever it took! I had our DAN doctor on speed dial for pete sakes!

My whole family had to become gluten and casien! According to our DAN doctor my child needed a certain amount of hours in the hyperbaric chamber and needed shots of Mb12 to hopefully increase language skills weekly. My child needed to be on a total of 12-14 different sorted supplements and vitamins a day. Chelation was a must as my child has been subjected to lead in my local schools district that might cause further problems. I went with everything this doctor recommended, if it didn't work, at least I can say I tried it though, right?

........... I wrote a long post and it wouldn't post so I got to put in two pieces, apologies.......

Anonymous said...

..........continued........ I listened to every "professionl" "specialist" "doctor" "therapists" who knew how to get rid of autism, there was. I even started following other families blogs, journals, messaging different parents back on what they did to help fix their childs autism! I became obsessed with curing my boys autism. It didn't matter that my other children were tired of all of it, it didn't matter that my son was still not speaking or using the toilet on his own. All that mattered was to keep trying, keep pushing, because recovery is possible as I was told.

Three years of constant badgering, bickering, advocating, educating, fighting, from "specialists" telling me what, when and how to do certain things to "cure" my sons autism. I sat there and listened, tried as much as my budget would allow me, we were in debt up to our ears but I was desperate, pure and simple. Desperate for answers, relief, hope, but most of all their words that my son could mold into society as a typical individual seemed to soothe that grief I had of having this disabled child.

Guess what? My son is still severely affected! The gains he made were literally significantly around the same gains my friends daughter made with just regular old ABA, ST, and OT for 2 years!

I'm all for advocating for a healthier, happier life style..but going to the extreme to curing him isn't what I'm about anymore! I still strive for my son to communicate better, ways to calm his wild behavior, and to teach him manners so he can live happily and safely in society. I'm just not stir crazy over curing him and never ever will go there again.

I think many families get suckered in to these ideas about "curing" their childs autism, that it is the only way their child will be happy or ever succeed in to society. My sons is healthy and happy most of the time. Society can kiss my A** for all I care now, because that was what it was all about, making sure he fits into society, for me personally it was. I sincerely think society grows more compassionate, patient and more open-minded each day an autistic child enters their world. I'm not saying autism is great, in fact thats a whole different group of families I'm not involved in. I'm just saying that we need to focus on their health and happiness way before even trying to "cure" them. Maybe during that process they recover, maybe not, but isn't what matters most is not what we want for them, its what they may want or need? Maybe my son is meant to talk, I don't know, maybe his voice may be through a device one day, who knows, maybe he doesn't need a voice, maybe his actual presence and love is all that matters. I don't know. I just know a lot of families take it too far, and we were one of them.

God bless your family, you are a brilliant woman with a very handsome son! Your blog is so very refreshing, please don't stop!

- Cathy

Anonymous said...

FYI: It is palpate not palpitate
To palpate is to examine or explore by touching (an organ or area of the body), usually as a diagnostic aid.
Palpitations are unpleasant sensations of irregular and/or forceful beating of the heart.

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