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Welcome to my world...

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

  1. caroline

    caroline Moderator

    My grandson gets croup ..... Very scarey. My daughter always turns the hot water on in the shower and sticks him in there - but I am sure you know that. She does call an ambulance but they have coverage.
     
  2. cantweight

    cantweight Gold

    So sorry you were sick! I hated when the kids would pick up every germ at school..ugh.

    We do a lot of neti-pot, or the neil-med squirt bottle for stuffy noses. Sometimes with a drop of eucalyptus or tea tree oil. When it gets really bad I go for the mucinex...guifenisin.
    Salt water gargles for the sore throats are good too!

    Glad yall are feeling better...your pics are awesome...I can not wait to be under 200!!!!
     
  3. Inger

    Inger Silver

    Glad you feel better! For stuffed nose you might try salt water flush? One nostril at time, and "breath" up saltwater in your nose. You could put a half raw onion by your bedside too, not so good smell but could help! At least it has helped me.. and then quite any dairy if you eat it... We also put a piece of raw garlic in some cotton into our nose as kids when we had this.. and also some peppermint oil around the nose might help - be careful to not irritate the skin too much tho! I also do herb teas and steam baths, for 10 minutes or so. You need to use a pot and maybe 2-3 liters of water+herbs and then put a towel over your head and breath the steam. You can use rosemary, salvia, thyme, chamomille, mint... I drink the teas too.
     
  4. MrPinkies

    MrPinkies Silver

    Thanks to everyone that replied about the stuffy nose and sore throat! :) I will definitely keep those ideas in mind for next time!

    Next, Happy Mothers Day to all of those awesome Moms that we have out there!

    Well, a few days ago, Chris (who is also on the forum.. randomly I might add.. lol) and I sent out an email to our parents and siblings... OK, ok.. the emails were all me.. I'm the bad guy.. lol We gave the ultimate awesome news that Ryan and Lizzie both will be going into a mainstreamed classrooms next year.. and that he will be in FIRST grade! Holy cow.. my kid is going to FIRST grade!!!!! This wasn't an option in January.. We were looking at another year in Kindergarten in the ASD classroom.. It took us 7 months to get his/our diet squared away- without cheating.. FINALLY 6 weeks ago, it FINALLY happened.. no screw ups.. We unfortunately had to tell grandparents that we were taking a break from get-togethers to get the diet up and going. They made a huge fuss.. but you know what?? that is their problem, not ours.. I finally feel like we drew the line in the sand.. follow our rules or don't see our kids.. it's that simple now.. sucks that we had to do it, but glad we did.. by the end of the email, it was the "rules", clear cut rules...

    So.. Mother's Day came around.. and we started a conversation with my dear husband's parents... They told us that everyone that they talked to told them how dangerous it was and that we were going to ruin our children's kidneys... and if we prayed hard enough, they would be healed from the all mighty upstairs.. Me? I'm not a big fan of the big guy upstairs.. just not.. never was.. never will be... My black and white thinking does the trick.. I like what I can see and touch and feel.. I like hard proof and science.. However, before everyone gets their panties in a bunch, I think evolution fits within what's in the bible.. I don't exactly throw it out the window completely.. or do I? Oh well..

    Well, back to my "fun" on Mother's day.. Ryan got over stimulated by having his grandparents over (especially when they tickle him) and he started to spin and run in circles in the living room.. If it had been January, this would have caused him ultimately to get to a point where he would have ended the spinning with throwing himself on the ground screaming.. for hours.. (and I mean.. the whole rest of the day...) on end... Well, I asked him to stop spinning. He didn't like that, but, he sat down on the couch for a minute.. and then he went back to spinning.. I asked him to sit and count to 50. He again didn't want to stop, but, then, he said, "I want to talk to you". I said ok, let's talk.. He told me that he didn't want to stop and that he likes spinning. I forgot what I suggested to him, but, the long of the short was I distracted him with something else that he likes to do.. There was NO screaming.. no tantrum or meltdown..

    This is called... MAJOR PROGRESS..

    There is NO denying this kind of progress.. there is nothing that could be said for excuses of why this happened.. This happened primarily because we have stuck to this diet and it is working... Can I get an AMEN??!?!?!?!!!
     
  5. caroline

    caroline Moderator

    You most certainly have an AMEN from me.......way to hang in there!

    Why is it so tough for people we care about to see great changes in us ..... and then dismiss them out of hand.........????
     
  6. cantweight

    cantweight Gold

    A-freaking-men! I am so proud of you for defeating the grandparent food beast! That is still soooo hard for us! Our parents just dont get it. They tell the kids a little gluten wont hurt you and my 8 year old believes it and regurgitates the words to me. God! Makes me so mad! They just dont get it, and its not even lack of trying, they seriously just dont get it. They think its great when they see the better health, the diminished neuro issues...they just cant put the pieces together.

    I commend you on a job well done mom and dad!!! Mainstreamed!!!! That is huge!!! Yay!!
     
  7. MrPinkies

    MrPinkies Silver

    WOOT WOOT! :)

    yep- welcome to my world.. lol :)

    we desperately want our children to have a healthy relationship with the grandparents.. but.. it's more important that their brain function properly.. right? that sounds sane?

    I was joking with a friend that "gets it".. and I told her its been like.. oh.. you're allergic to peanuts? Here's a peanut butter and jelly sandwich... as a treat.. because Mom and Dad never let you have it at home! LOL It's sad, but funny and f'ed up at the same time!!! seriously!!
     
  8. MrPinkies

    MrPinkies Silver

    you are becoming my new bff.. lol just so you know.. :) they aren't (or at least my parents and my in laws) don't see it as an illness... in fact, they chose to sorta ignore Autism as if it wasn't even there (it's talent to do so).. which as the parent, it's a slap in the face.. with all the therapy, etc that I do and diet stuff, etc that I do with my children.. It feels like it takes away from my life works of what I am suppose to do in life... I love my job and career as an Autism mom.. :) but also as a mom I feel like my toes are always being stepped on.. and the boundaries are always broken.. well.. guess what.. NO MORE! I've had enough.. especially when it WORKS!
     
  9. caroline

    caroline Moderator

    I am on the other side of the fence - so to speak .... I am the grandmother that cares and would turn over every rock to get answers - but they look at me like I am from Mars and I get a lot of eye rolling etc. I was trying to tell one daughter about flouride ......... she is a very smart girl and her husband thinks he is super smart ..LOL ...but ......If it is in the water - we must need it.....they wouldn't put it there for no reason - would they???

    I admire your tenacity and courage ..... the grandparents are missing out on so much.....
     
  10. MrPinkies

    MrPinkies Silver

    :)

    I got to a point where I was trying anything and everything to figure this sucker out.. Autism itself is a straight up b*tch sometimes.. There were times where Ryan would literally scream for 6 plus hours and there was JACK I could do for him.. touching him just was one more thing for his little brain to process.. I sat on the floor other side of the door of his bedroom in tears.. I don't drink for this reason.. ever.. and even if he could calm down.. he didn't have words to explain what was wrong.. and just for an example, one day.. I realized I was putting on the right sock before the left one.. and he wanted his left sock on first.. his brain literally couldn't handle the fact that I was putting the right before the left.. Ryan is extremely sensitive to lights and noise.. and touch.. and all eyes, ears, mouth, nose, fingers, and toes all needed a break... My life has been forever changed.. I went to Lansing (the state capital) and got to testify to the House of Reps, literally begging for the medical insurance mandate to pass..

    It's been a long.. very long four (starting five) years.. I would have given ANYTHING to be where we are now, years ago.. I never would have thought we would be here... is it perfect.. hell no.. is it better?? yep.. and so much better life that I'm screaming at the top of my lungs for all my other Autism Mommy friends to hear what I am telling them, but, no one is listening..
     
  11. cantweight

    cantweight Gold

    Oh Audrey you are just way ahead of your time...can you be my kids adopted grandma!!!

    Pinkies I have much to learn from you my friend. I have a 25 yr old brother (still living with my mother) that was diagnosed with aspergers, different docs had him on and off the autism spectrum his whole life. He is very high functioning but my family refuses to recognize his confusion, his difficulty with socialization, even his stemming. They wont help him and he is as convinced as they are that "there is no issue". Not even allowed to say the "A" word in their presence...it is so weird, I dont understand.

    I want so badly to help my brother he is so frustrated! He has no friends, never been in a relationship, has a very hard time with job interviews and cant hold a job for long, his diet is horrible, he is so sick of me telling what he should try to help himself....its heartbreaking. Any advice on how I could help him? I just want to see him happy.
     
  12. caroline

    caroline Moderator

    I would love to be your kid's adopted grandma ..... I feel pretty useless around here! [home I mean!]

    I think we should talk about this more somewhere here - with JK's help...
    Why is anything we say falling on deaf ears? I try not to say much and only with kindness - but any information seems to be threatening for some reason.

    I firmly believe that all of us that have ended up here on this forum are a different breed - I have always looked for answers and listened to new theories etc. etc. etc. I never felt threatened - I just wanted to learn. I always thought that there must be answers somewhere - I just had to look hard enough......

    People that call us sheep are so, so far off the mark - we are the direct opposite.....

    I don't understand why people wouldn't try anything to have a better life - you are only proposing dietary changes - why is that so threatening????? and maybe - by some crazy miracle - it could help......

    When you are coming from a place of love and concern and caring - why does that not compute???
    As the messengers - what are we doing wrong?

    This seems like a no brainer - isn't deleting wheat and sugar pretty mainstream for Autism these days?
     
  13. cantweight

    cantweight Gold

    Love and agree with every word :)
     
  14. nonchalant

    nonchalant Silver

    Pinkies, what is a 90% water diet? 90% by volume? You are using spring water?
     
  15. MrPinkies

    MrPinkies Silver

    ok.. I have a lot to respond to.. uhh.. hang on.. my brain is trying to wrap around what I want to say..

    so.. in regards to Autism and the community..

    The Autism community, in general, has a conversation going on that is not the RIGHT conversation... It needs a new conversation.. and JK is definitely the one to stir the pot.. but.. he needs to do it... not here.. because very little are looking here... but.. I guess this is me BEGGING for a webinar directly just on Autism...


    Their focus is ABA, speech, and OT... and of course.... the idiots out there that believe that shots are the main cause... Me.. I knew before my kids were born that something was different...

    deleting wheat and sugar.. no... wheat and dairy... not even that.. wheat and just milk.. ugh.. it's not a no brain-er... I wish it was...

    no one is listening because it is called a "spectrum".. meaning.. if you know one person with Autism.. you only know one person with Autism.. NONE of these kids are exactly the same.. So.. just because one thing works (such as ABA) for one kid, it's "not going to work" for the other.. (total BS in my opinion)... The gaps in skills are different in every kid, but, when one boils down the actual problem, the actual generalized problem is the same- social interaction, repetitive behavior, and language/communication issues... Outside of that, a LOT of these kids/adults (gotta remember that these kids grow up), have GI issues, sensory processing disorders, etc etc etc....

    By 2021, the number will be 1:9 kids... does that scare anyone besides me?!?!?!!?!?!?!?

    When one is given the diagnoses.. that is it.. you are shown the door.. there is no one book.. no one person or place.. they say.. Good luck... Autism Speaks spends more money paying their CEO than giving back to the communities... The treatment is more money than most have.. We've spent probably more than 120K and we make less than half of that in a year... that's just on therapy... that doesn't include what we have spent on tools- pressure vests, blankets, etc... or on special food... haha I called it special food..

    cantweight- I have to think about what you said to give you an answer... I'm not giving up on you, just have to figure out how to word it.. lol
     
  16. MrPinkies

    MrPinkies Silver

    Yes to the spring water... 90% as in... out of everything consumed- 90% of it is water.. I got my kids these awesome colorful water bottles that they have everywhere they go...

    If they are hungry, we let them eat.. but.. we make sure they are drinking extra and a LOT of water.. ketogenic diet... very very very little to no carbs.. high extra fat.. moderate protein...

    it was no carbs.. but.. it's damn near impossible to do so... but.. it's working either way.. gotta be doing something right!
     
    Last edited: May 13, 2013
  17. nonchalant

    nonchalant Silver

    Sounds very familiar, sorry to say.
    If anyone knows of a medical charity that IS worthy of a donation, plz let me know.
     
  18. MrPinkies

    MrPinkies Silver


    This really... in a lot of ways.. breaks my heart... I feel for you cantweight!!

    This is a hard diagnoses.. deep down.. parents don't want anything wrong with their babies! Staying in denial, however, accomplishes nothing (honestly, I can sense the anger.. and I would be too).. As a parent.. I can understand not wanting to hear the "A word" (although, I got over this hump quite quickly) the grief and pain that this causes.. There are, to this day, days where I wonder if Ryan will be still living with us when he's 30... There are times where I wish I out-live my kids so that I know they are taken care of... I have a lot more hope now.. but.. there isn't a day that goes by that I don't think about it...If your brother was five, I would tell you to cut your parents some slack.. but seeing how he is 25 with major self-care issues, it's kinda a different story... the point of being a parent is to prepare your off-spring to be able to live on their own and take care of themselves.. to have people to love and love them back just as much.. Everyone is so worried about the kids.. but what about the adults? If we did nothing to help these kids.. we are looking at group homes, wards of the state.. and we are talking in the thousands of people.. I don't know about you.. but.. Michigan has enough BS to deal with... especially around the Detroit area.. lol enough said.. luckily, I don't live in Detroit.. outskirts.. not so bad there...

    If he is frustrated, you should leave him be... Friends with Autism tend to have longer processing time.. even as adults.. He needs time to process what you are telling him..

    If it were me.. I would do one change a time... big changes, and lots of changes at once.. too overwhelming...

    I would show visually what you are trying to convey.. and try to do it in something that he is interested in... or help make goals with a reward..
     
  19. cantweight

    cantweight Gold

    Thank you for that :)

    I think I need to shut my mouth, accept him as he is and not try to fix anything anymore. If he was happy I wouldnt push him to change, but you are right....every time I push he freaks. I think I am being helpful...I give him books, tell him about recoveries people see from diet changes, the last time I saw him I offered to buy him an interview outfit and submit his resume for jobs and he was so overwhelmed by it. He took a ton of anger out on my mom, even hit her. And they said I pushed him to do that. He is just so smart!!! I know he can do amazing things!

    I will step back, keep my mouth shut and just cheer him on or as you said find gentle ways to convey things...I am such a "lets jump in a tackle this thing" kind of gal....I needed the reminder you gave...thanks :)
     
  20. Jack Kruse

    Jack Kruse Administrator

    I said a mouthful in my radio show with Tim Jackson on MTHFR report........I waited to see the response from that group of people and i got what I expected. They dont want to hear the truth because autism is not about the kids........it is all about the parents. It is hard to realize you and your epigenome passed thru you into them........and it happened under your nose and you did not and could alter their environment........now you know what to do and often times it does not help because with Autism.........Timing of the fix is the most important thing. If I could tell you how many times I have told many people to think before you rush to have a baby just because you want it so bad..............they should talk to a parent of a kid with autism........who really knows the deal..........This is a disease that hits a deep rift in people.........for many deep reasons. My view is they are not ready yet for what I think. We need people to look at their past and their present situation and think.........deeply before they act. I told my kids they should get labs on them selves and their future spouses before the decide a thing..........that is a very raw thing to tell you kids but that is precisely how the science make me see it. EMF 7 is a rambler.......of my thoughts.......but man is autism is a disease I was channeling when I wrote it.
     

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