Saturday, December 3, 2011

Should I Be More In Touch With My ASD Son? -- misadventures in biomedical

Should I be more in touch with my kid???

I've touched on in a previous blog post how the wife and I are not what we like to call "über autism moms and dads". As I said in that blog post...


Also you should know that we are not what the wife calls "uber autism moms & dads". We have done alot of the biomedical stuff and kinda got burned by a few (made Kyle worse?) but we don't keep food diaries and track/log his moods.


But the reason for today's post is every once in awhile after an appointment with a particular doctor or a new therapist in our lives I come out of it thinking "should I know more about my son?"

We saw alot of people over the past few weeks about Kyle's breathing/ breath holding issues.... neurologist, behavior specialists, etc... and at each of these appointments we get asked things like "Do you notice an increase in the behavior if he's engaged?    Is there anything that you think increases the behavior?   Does he look like he's swallowing the air or just holding his breath?" And the wife and I will look at each other and say things like "not that we can tell.  It's pretty consistent to us across all situations..."

But I walk out of these appointments thinking "should we be more in tune with our son, like the über autism parents are"?  And it throws me back to all the biomedical treatments we've tried over the years.  I've detailed them all here.

With most of these biomedical treatments we saw little or no improvement and deep down I feel like some of them might have made things worse...(I touch on that here...)..but should I have been more in tune with my son back then?  Were there subtle /small changes and improvements that I missed cuz I was looking for a huge change, a "wow factor"?

The 2nd DAN Doctor that we went to used to say that if you don't see a NOTICEABLE change in ____ behavior after trying ____ treatment for her recommended amount of time then it wasn't "working" and there was no point in continuing.
 But the first DAN Doctor we used was for the B12 injections and he sent us home with a list of like 100 completely small, subtle, random things to look our for.... and If we scored over ___ on this test than the injections were helping and we should continue.  As usual with Kyle he was kinda borderline passing so like everything else biomedical we continued until something happened to scare us off and/or the side effects outweighed the possible potential benefits....

us -- "He's getting ALOT more hyper, more ADD/ ADHD"
Dr -- "Oh that's just temporary. It means that the B12 is helping"

So we hung on as long as we could...and then retreated from biomedical for 6+ months with our tails between our legs...

But even now...that we've taken a biomedical break for almost a year I often wonder if there are subtle signs that I'm missing....

"Does he have more meltdowns on the day he gets a milkshake in an attempt to fatten him up?  Does that mean that we should we try the CF part of GFCF again?"

"Does he have a slightly better appetite on the days I give him a multi vitamin?"

"Is he slightly less stimmy when I give a fish oil pill?"

Maybe?  I'm not sure...  Should I be running data and keeping a diary?

Should I be more in tune with my child?  Or am I just seeing slight random coincidences and driving myself crazy.... Cuz the few times I've thought that I've seen a pattern it was never consistent...   In my mind, the fish oil would work miracles for 3 days straight and then the benefits just disappear... So maybe it wasn't the fish oil?  Maybe it was something else?  Or maybe my kid just randomly had 3 great days in a row for no reason!  Is that possible?

As usual I'm rambling, so I'll end this blog post the way it began....

Should I be more in touch with my child?



fb3/29/13

14 comments:

  1. My son is 9yrs old with severe ASD and non verbal so how am I expected to be more "intune" with him??? I do sense when things are not working for him as far as diet,,the NO SLEEP issues and hyper activity but I feel like I really dont know my son at all!!! I sit and watch him and analyze everthing he does and still it really doesnt make much sense to me. I love him for who he is and would never want to change or cure him but would like to help him...especially when I KNOW something is wrong!!!!!!!!I have kept diaries of sensory issues,,no sleep and what could be causing it,,eating certain foods or taking foods away but still dont know what causes some of those really nasty behaviors. His OT has worked with him for 7yrs and says he is 4% of the autistic population who has such severe sensory problems that dont seem to be relieved by meds and sensory diet so what do I do??? He has seen countless specialist and none can offer much that helps. He is for the most part a happy child but gets extremely frustrated very easily which leads to all day issues. I still have not found any one thing that triggers his overloads that lead to major meltdowns...yes there are the typical triggers but there are sooooo many its hard to avoid them! I would like to think I know my ASD child as well as my typical child but I dint. I wish there was someone out there who could give me all the answers......

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  2. I think you are doing the best you can. I'm not an uber autism parent either. I do want my son to improve in all areas of life but more than anything, I just want him to be happy. Now, to me, a parent that wants their child to be happy is the best kind. Don't think less of yourself because you don't know all the ins and outs of your child. Even verbal "normal" (and I use that term loosely) children have parents that know nothing about them. It's the caring enough to know what you know that sets you apart from the rest.

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  3. Have just come across this blog. As the parent of 2 autistic children, I go through pretty much the same emotions, even though we're separated by an ocean, some land, more water and many, many miles.

    I have to confess that I am a believer in the biomed thing, because it has worked for me, but it does not work for everybody. Also, yes, it is possible that it makes the situation worse. If you are going for biomed, I do suggest that you keep some sort of journal. Besides food intake, also record weather patterns. If there is a meltdown, you should also record what happenned before and afterwards. Only then will you be able to notice whether there is a pattern.

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  4. Incidentally you can get (free) apps for your ipad which will help you keep records

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  5. You're driving yourself crazy. Stop it! You love your son, you're doing everything you can, and you're only human, for God's sake! Please stop beating yourself up.

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    1. This is the best response in the history of responses. All parents who love their children and honestly do all they humanly can should print this out on a large piece of paper and put it up on their wall!!

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  6. i think that biomeds are b.s.; a waste of time and money. and, potentially very hazardous to a child's health. no parent should beat themselves up with the "we should have" or "we could have". it does no good. everyday is a new day and you should live it by managing the best you can. you should teach and play with your child just like you would a typical child. hopefully, in the end you do enough that your child will be able to navigate society and be happy. after all, being happy is what it is all about. i know non-autistic adults that have a hard time. being "normal" does not always mean success and happiness.

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  7. I tried the vitamins, CFGF diet with My David, but it's a lot to keep up with. It seemed to help at first, but like you I think maybe he was just having a good few days. I still restrict his gluten and he drinks lactose free milk I'm sure that's not what they mean by dairy free, but he is lactose intolerant. I have 2 other kids to take care of I would need a robot or a cleaning service if I wanted to keep track of everything My David does and eats not to mention the weather. He also has seasonal allergies and that causes bad days. How am I supposed to keep track of what he does/eats at school I don't even get notes home now that he's in Kindergarten.

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  8. Our parenting style with our four kids (including my son on the ASD spectrum) is what I term 'healthy neglect'. Further, as an university academic I lecture around the absolute negatives around 'hyper' or ' helicopter' parenting styles. This does not mean we don't love our kids to bits or seek every possible kind of service available for our son. But it means we try hard not to make him and his disabilities (cerebral palsy, epilepsy, severe allergies as well as ASD) rule his or our lives. I laughed at this posting because we are the same at our medical appointments and with 4 kids in 5 years we can never remember without thinking hard who has had what when.

    In conclusion I think not being what you term an 'über autism' parent you are doing pretty ok.

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  9. I am so opposed to biomedical i can't scream it loud enough. Did the diet for nearly 4 years. It was a nightmare. Chelation, almost killed him- LITERALLY. Eff these biomedical people. I'll tell you the same thing the doctors STERNLY got the point across to me. I am not a doctor. I can sit infront of Google all day and play dr and cure autism just like Jenny McCarthy but guess what.. my son needs tending to. I gave the biomedical world a big EFF YOU after 5 years and nearly losing my son. Instead, I did research on finding GOOD DOCTORS! Not DAN docs that will bleed your finances dry. ACTUAL doctors. OMG the change in Tommy has been out of this world. Even after the year from hell that we just had with him (puberty is HELL!!!!!) I recently found the psychiatrist to whom I owe my life to. Tommy was hospitalized for aggression (beat the crap out of me) and the doc adjusted his meds and omg I have MY SON BACK!!! (NOT a fan of risperdal btw. Do research. We used it for 8 years.. for aggression. Now there are reports coming out that its CAUSING aggression). Our lives changed when we stopped trying to CURE (FIX) him, and instead, TREAT him. He, and we.. have never been so happy.

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  10. It took me a long time to see a difference with going gluten free but I have seen it when he has had gluten... He will not make eye contact. I can imagine that in more severe cases it would be even harder to detect a change. When I try anything new I always wonder if I am looking too closely and making up reasons to think something is working.
    Rhonda, I went to an autism parents' night out recently where some people were acquainted with therapists who worked with Jenny McCarthy's son. Apperently she neglects to even mention that her child was getting 50+ hours/week of ABA therapy? Maybe THAT has something to do with her son's recovery? It seems a little inconsiderate to the autism community to send people on a wild goose chase with a difficult diet and not even mention other treatments that may have contributed.

    AD, we all get tired. The prospect of keeping a diet/weather/stimuli diary is exhausting just to think about. I've tried and can't seem to keep it more than 2 days in a row. An app seems like it might help... But even just keeping a notes list of things that are worth noticing might help jog your brain for clues?

    Rebecca

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  11. Boomed shouldn't be scary or life threatening...the idea is simply to treat what is wrong in the body...hence giving our kids the best platform possible. If there are underlying issues then of course our kids brains and bodies don't do as well. The whole "cure" word drives me crazy. I have a child who lost her DX and I give much credit to biomed for helping us get there BUT it should be used to treat what is wrong and not just random stuff. Our docs...all of them should be testing our kids just like they would do if it were us. I never had that WOW moment either, but what I did have was a child who continually got better and healthier. The answers are not as obvious as we would all like...and its complex. We have clues into autism that cover nearly every body system, cells, oxygen, pathways, genes and some are things that can be treated, others are damaged beyond repair, and others we are still clueless about....its frustrating. And so hard on us families. But biomedical interventions are just basic medicine, and we do have MAPS now which are actual medical docs who are doing their best to educate fellow physicians on pediatric special needs so that people are not going to wackos...and hopefully more and more of our regular docs will join in and work towards making this trustworthy, affordable, and commonplace. We all just want our kids to be the best possible. I never teach CURE in biomed, if your kiddo gets so well they lose DX or they find a kind of recovery, that is awesome...but boomed should be about health and giving our children every possibility. Its not weird to imagine a patient being given testing, meds, pt or speech in a hospital all together as a plan to get them back to health...it shouldn't be division on doing the same for our children. It should be customized care and a team using all options.

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  12. This comment has been removed by the author.

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  13. It sounds like you are doing great. You know your child better than any doctor as you are with him more.

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