I’m a 46 year old neurotypical dad with a 13 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-). For the full Autism Daddy experience like my Facebook Page at www.facebook.com/AutismDaddy
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?