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Welcome to my world...

Discussion in 'My Optimal Journal' started by MrPinkies, Apr 27, 2013.

  1. MrPinkies

    MrPinkies Silver

    This is crazy to me.. mainly because everything that we have tried and was suggested from you- WORKS.. Not owning a tv or cell phone.. changing all of our light bulbs.. turning off wifi and rearranging our computer setups... the diet <-- the biggest help of all... all of this stuff works better and more efficiently... we were so desperate to figure out what was the cause of all the screaming and meltdowns... and how to get my son more independent.. This has worked more than any therapy we have ever done with our kids... Parents don't want to hear it because of pure and simple --> "blame".. from shots to "you should discipline your kids".. the disruption and disasters that breaks families apart.. to the complete strangers that give dirty looks and make comments that kill the soul. Most of us are over what caused it, we just want to know what the hell to do about it and get through the rough stuff....

    On the other hand... we do need to get to the bottom of what is going on.. as a whole.. truth needs to come out, regardless of the pain it is going to cause.. Go ahead.. rip the band-aid off.. Ahead, in the future, it's not a pretty picture... at all...
  2. MrPinkies

    MrPinkies Silver

    Just give him a few weeks to calm down and figure out what you were trying to convey... I would probably take him out and go do something fun in the mean time- bowling or... go for a run.. or.. shopping.. or dinner... whatever.. just go and have a great time.. repair your relationship first.. never stop trying to help.. just one change at a time... it's a journey.. For example.. I did not get fat over night... and I did not get skinny over night either... one step at a time.. one day at a time.. and change over time...

    If he took out anger on his mom, they needs to understand that he made the choice to do so.. NOT because you pushed him to do so.. Unless you literally took his arm and helped him hit.. Do NOT take that blame.. EVER! and as far as hitting someone.. it is a bad choice.. and bad choices have consequences. If that had been anyone else than your mother, he probably would have had the cops called and a jail record.. Anger is a very strong emotion and he needs to learn how to channel that anger properly.

    What state do you live in??? I'll see if I can dig up some resources... might want to take a trip to SSI..
    Last edited: May 14, 2013
  3. nonchalant

    nonchalant Silver

    Pardon me if I am being offensive, but it seems the same approach is needed on the autistic kids/adults as is needed on their parents, just to a lesser degree. They both need time to process and understand and accept. We are hitting the parents with a lot of confusing and mind-bending information that is outside their normal way of thinking.

    Pinkies, I was reading what you said, "Just give him a few weeks to calm down and figure out what you were trying to convey", and I realized that I was functioning a bit like that, a few years ago. At night, I would often go over events of the day, and figure out if I had missed anything. Any nuances or overlooked facts. I have realized that I no longer do that. I am confident that I am processing information correctly the first time now. Hmm, spectrum disorder indeed.
  4. MrPinkies

    MrPinkies Silver

    I'm starting year 5... Out of those 5 years... it's taken me 3 years to research and figure it out... I know parents (hundreds of them, because I interviewed them before going in front of the House of Reps) that still, to this day, haven't figured out what exactly this disease is and how it relates to every aspect of life... Some parents leave it up to the school to figure things out for them.. and then they wonder at 15 years old why they can't take a shower by themselves... ya know what I'm sayin???!?? Or even the parents like my husbands parents that are in denial and don't accept that there is anything to correct, period.. and they don't do anything with hopes that it will correct itself over time...

    I know if someone is giving me a lot of information on how to improve my life or if I'm doing something wrong.. it takes me weeks to A.cool off from being pissed because I usually think my way is better.. but B. really understand what they are saying.. but when I understand it.. I understand it.. :) Are they usually right? depends.. I'm usually open for an easier way of life.. lol
    Last edited: May 14, 2013
  5. MrPinkies

    MrPinkies Silver

    The other issue, nonchalant, is that the majority of parents, don't realize something is wrong until the kid is 5 years old- kindergarten.. Personally, I don't buy into this.. Ryan was diagnosed at 18 months and Lizzie we knew at 6 months, but not officially diagnosed until 16 months.. Apparently, they have to wait until the child is walking to diagnose..

    Keep in mind that the tests that they have TODAY for Autism are only 15 years old- MAX... the definition of Autism has changed over time... In fact, they just changed it AGAIN last year and everyone'a panties got into a bunch..

    It's a mess.. but.. we keep on marching forward doing what works...
  6. nonchalant

    nonchalant Silver

    Well, if changing my diet and environment ended up changing the way I process information, as well as changing my moods, I'd say you are on the right track here.
  7. MrPinkies

    MrPinkies Silver

    Happiness is!!! :)
  8. MrPinkies

    MrPinkies Silver

    Sometimes, I REALLY wished I didn't have a facebook account.. Ok so.. I have all these pages that I "like".. mainly.. because.. well.. sometimes.. there are some really good ideas out there on how to handle different behaviors... Naturally, there was a post about good ole' melatonin and sleeping.. a LOT of these kids have sleeping issues... I dealt with sleeping issues with my kids.. they would both get up in the middle of the night- at different times.. like they wouldn't disrupt each other... they would get up.. and either spin or jump around.. and then eventually, they would put themselves back to bed or get in trouble- like.. going out the front door kind of trouble.. So... One page posts.. Hey friends, what brand of melatonin do you guys use? There was a lot of different answers ranging from something from CVS gummies to Whole Foods whatever to nightquil... There were even answers like I get my kid high on pot... or.. I give my kids the drug called Clonidine.. Soooo.. I got ballz and posted about the effects of blue lighting and how we changed our lights and turned off electronics at 5pm, etc etc etc... Like.. I want you guys to understand.. BOTH kids put themselves to bed at 8pm... they are tired.. like.. they SLEEP through the night now.. there is not getting up- besides the occasional "I forgot to go potty before bedtime and now I need to go" thing.. which, again, RARE... Here's my beef... instead of the response of Hey- maybe I'll try that and see if it works! I got.. "shut the front door" (haha, I made a funny).. that won't work... and never respond to our page again... seriously? like.. wow! I thought I was helping! Not like I said anything offensive either!

    I'm now laughing at this.. because seriously.. this is stupid.. If they want to give their kids some kind of dangerous drug- illegal or not, or gummy that is mostly sugar anyways (no wonder their kid can't sleep), or waste money on whatever.. be my guest.. not my kids.. my kids are sleeping like rocks.. or as my dear husband says when he gets home from work, "are they up there recycling those APTs yet"?.. lol

    As I said yesterday... the Autism Communities are not having the RIGHT conversation(s)....
    Last edited: May 15, 2013
  9. caroline

    caroline Moderator

    like you said - a few simple things you can try ... and they just won't listen......How could you even imagine that would be offensive to some. I would be knocking myself out to try anything......there is something very different about people these days that I just don't understand. If you have told me that you have had great results with your children - why wouldn't I take that on board?
  10. Jack Kruse

    Jack Kruse Administrator

    there is another reason they are part of the problem because they are making money by not asking the right questions.................truth bomb
  11. Jack Kruse

    Jack Kruse Administrator

  12. MrPinkies

    MrPinkies Silver

  13. MrPinkies

    MrPinkies Silver

    That is EXACTLY what I thought too!! But oh well.. if they want to spend the money.. I mean.. ok.. cost of melatonin, or gummies, or whatever... VS.. one time cost of light bulbs... HMMMm..... LOL this is driving me NUTS.. I feel like taking people by the shoulders and shaking them... Maybe it's just me.. but.. I kinda find, on many levels, giving my kids anything harder than tylenol, unless on a deathbed.. like something I would really have to think hard about... I'm not sure what the risks of drugs like clonidine?? but.. when the answer of like.. hey.. change your light bulbs.. ya know? HA!
  14. MrPinkies

    MrPinkies Silver

    I want to change the world... especially in the world of Autism... I want to be one big huge source of information for people.. It's funny... losing over 120lbs and I have more insight to that.. seems that to people, I am more creditable there.. but Autism is what my heartbeats for!!! Just getting point A to point B I guess? hmmm.. something to think about...
  15. caroline

    caroline Moderator

    I think that kind of makes sense ..... you now look like an advocate for good health ...you are not just blowing smoke out your a**. I was going to change to a new physio that is much closer to me but when I went to see her- she is this huge overweight woman ...and her specialty is eating disorders and helping people to make life style changes around food etc. I thought to myself - there is no way in hell I would listen to anything she has to say or want her to touch me.... in fact - I could teach her a thing or two. I left the address of this website with her receptionist!
  16. caroline

    caroline Moderator

    maybe - we have to wait for people to come to us for information ........
    But - it must break your heart when you see these children and these simple things could make such a difference to them.
    To me - it is almost like abuse .....I always get so upset when I see big fat mommas at the food court with their very overweight children and they are eating KFC and drinking coke......

    Doesn't it seem like nobody knows better about anything these days? Their brains are fried - Dr. K. has talked about that......
  17. MrPinkies

    MrPinkies Silver

    This website needs a "like" button... lol :)
  18. MrPinkies

    MrPinkies Silver

    It does break my heart... especially to the personal ones that are doing the best of what they know.. To me, however, I have a very different view... I realize, especially with the weightloss, had to come to terms that I did that to myself.. No one forced me to eat the way that I did.. but I do however put a tiny bit of blame on companies and their sneaky crap.. like how in the world the FDA approves over 48 different names for sugar...

    hang on dinner time.. gotta eat before it gets too late.. I'll post later after dinner.. :)

    ok back.. 48 different names for sugar.. and labels are made to be confusing...
    Last edited: May 15, 2013
  19. lioness7

    lioness7 Gold

    Chiming in here, don't have an autistic child , just a cancer mom,but have been studying it for the last decade. Please share the blogtalk Dr. K gave recently.

    A few days after my son was diagnosed with ALL, I was sitting in the hospital cafeteria reading some books, still trying to digest , when next to me, I noticed a couple with two children. The parents and daughter were playing on their phones (before the era of smart /dumb phones) and the little boy was one of the worst cases of autism I had seen. I sat there , reading my books, but glancing frequently at the family. There was no interaction between any of them...zero, zilch, nada, nothing......The only though going through my head was : omg, thank god , my child only has cancer! That poor child had no hope in hell between the parents and the doctors. At that moment , I felt worse for them , than for myself. I saw the system. I saw everything in those few moments...another one of those moments that made me take control. After three years of txt , I often wonder about what happened to that little boy who most likely received a drug, and was sent along his way only to come back the following month for another prescription refill.

    My son missed 75% of his early school years. I asked for a neuropsych test (free due to txt) so I could gauge where he was at. Of course, a bit distracted, not on task, ahead in some areas, behind in others, some chemo fog maybe...their solution: Ritalin, it will make him focus better. I looked at the psych dr and said that short of my son coming at me with a meat cleaver, he will not under any recommendation be put on these drugs........meeting ended.

    What amazed me was the questioning. Fine, this is supposed to be a pediatric cancer psych, but none the less........"do you have thoughts of death?", do you worry about people dying?", etc, etc......My son had no answer......he could barely recall the name of his illness. if they could not deal with a post txt cancer kid who was under the assumption that all kids have cancer, what the hell are they going to do with other ASD child as well as their parents? I was so disgusted, I politely left with my child.Which of course left me mumbling to myself all the way home: If mainstream science can't deal with ADD, autism, etc.....what the hell can they do with the big C?!!!!!!!!!or any other neolithic disease for that matter? To this very day, I still shudder at the thought of parents bringing in their child to specialist doctors, expecting results......won't happen!
  20. caroline

    caroline Moderator

    Lioness - how is your son doing now? you are a force to be reckoned with ...as all Moms should be ...advocate #1...

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