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is the force holding me together it is my life jacket to be continued comments 1 don t poison your kids to cure them of autism april 30 2019 filed under adhd autism autism mom family life on the jay train special needs kids the jay train 11 36 am tags autism autism cure autism detox autism reversal autism treatment because apparently this needs to be said i know i said i wasn t going to be posting here that much anymore but then i got a message from someone i knew in high school and well here we are in the initial message this former classmate of mine tells me that his son has autism and he s been researching autism reversal through diet and detox i see the words reversal and detox and every alarm bell in my body goes off i don t want to be rude though and i really don t want to get into an argument so i kindly respond that based on what he has said we are not on the same page regarding our ideas about autism so basically let s just agree to disagree and keep it moving he felt the need though to respond with a you tube link that was supposed to convince me that biofilms were the cause of my kids problems and detoxing him using bleach either orally or as an enema would cure him ffs anyway i m still trying not to be rude at this point so i send a very quipped response to let him know that i am already familiar with the person in the video and i think what they promote is dangerous the end did he reply yet again yup sure did to say that while not all people will have their autism reversed it has been shown to work on some and improved the quality of life of many others he tells me his son has gastrointestinal issues and he thinks it s related to the autism and it s possible this detox would fix it all this is where i kind of lose it and go off not in a rude way but in a lengthy way i let him know in no uncertain terms that people like the woman in the video he sent me are evil and they prey on an already vulnerable section of the population who are so desperate for help they will try things that are actually abusive that makes them the worst of the worst in my book i give him some actual trustworthy information about autistic people i tell him that there are a number of disorders or diagnoses that co occur in autism at higher than expected rates i tell him that these coexisting conditions may either be treatable in their own right or may influence the long term outcome for the person i stressed to him that when there is a focus on the diagnosis of autism it is possible to neglect other diagnosable treatable conditions and that this happens at a higher rate than we probably realize i encouraged him to get additional testing if he s concerned about his sons medical condition separate from the autism i laid out my case for why medication or taking any supplements or restricting a diet should be carefully planned for and thought out and supervised by a real doctor who is up to date on real science not some quack who stumbled upon a get rich scam while touring the jungles of south america not by some quack who in more than one country has an arrest warrant out for him regarding the poisoning and death of several people not some quack who would have you bleach enema your child to the point where your child could need a colostomy bag not some quack who tells you that the nausea vomiting diarrhea liver failure and severe kidney damage caused by his proposed treatment are proof that the solution they are selling you is working it s been a few days since this interaction and i still am quite shaken by it mostly because i feel bad for the poor kid i totally understand why some parents get desperate i know it can be hard but no matter how hard it is for the parents it s still our job to protect our kids and not to make things even worse for them there is no quick easy fix there is no cure there is only get your child the help they need to be their best physically academically and emotionally there is do the best you can to provide your child with a good quality of life in whatever way you can there is so much good research out there there are so many therapy options and communication techniques available that are worth paying attention to what works for one person won t work for another so i am not here to tell people to follow the path we have followed but i can say with certainty that poisoning the autism out of your child is not the way oh and no after i sent that last message i haven t heard back from him comments 2 a new journey april 23 2019 filed under uncategorized the jay train 9 39 am it s been quiet over here lately that s mostly because i no longer feel compelled to journal the everyday happenings in my boys lives to be honest things are going pretty typically for 11 and 12 year old boys that s a good thing i don t think my everyday is all that exciting anything cute or funny that comes up is quite easily captured in a short facebook post i am not taking down the jay train b side i may pop back in from time to time if something comes up so if you haven t yet please still follow here so you can get notified if a new post shows it s face i have loved this corner of the internet for 8 years my boys have grown up here just look at my profile picture can you believe that in a couple of months that baby will be in middle school and next year ace will be in high school to every single person who ever reached out with a kind word or commented with a suggestion i am forever grateful to you i will cherish the things i have learned and the friends i have made your support altered my life that is not hyperbole xoxo always deenie leave a comment my wish april 2 2019 filed under adhd autism family life on the jay train marriage special needs kids the jay train 11 57 am tags adhd autism blackness friendship honesty love raising black boys one of the things that i often tell my children is how important it is to choose good friends and to be a good friend i know for now they don t get it but i hope that my repeated focus on it seeps into their dna and sticks my friendships are and have been a critical factor in my ability to get through life in any sort of graceful or healthy way a couple of weeks ago we had one of our first really nice weather days since the start of spring ace jay and another friend were outside playing the boys wanted to bring their nerf guns outside to have an epic war ace asked because we ve had the talk with him that one that the parents of white children don t have to have the one where the rest of us have to tell our black sons about racial bias and perceptions the one where we have to warn them to be careful because they may not be assumed to be innocent children playing games if any of you doubt the truth of that statement please let me know i ll point you towards some stories they are plentiful below is a conversation i had with someone who has been a very dear friend to me for 25 years we mostly joke around tease each other and share funny meme s back and forth but i knew that if i shared something that was in my heart he d step up and boy did he deliver me right aligned him left aligned i hadn t mentioned it in my texts but in addition to tamir i was also thinking about the shooting of charles kinsey kinsey was taking care of an autistic man when he was shot by police while lying on the ground with his arms in the air his disabled client was sitting next to him any time my boys step out into the world they each face dangers beyond what many other boys face watching them grow up and become more and more independent is too wonderful to explain i marvel at them but i worry about them their blackness isn t ever going away ace s adhd and associated poor impulse control or social awkwardness isn t going away jays autism isn t ever going away those things unfairly put them at risk yet there are times when i must let them face the fire i can t let them see all my fear i do want them to be careful i do not want them to live fearfully my friend wished for his loved ones time health and courage those are great but i think my main wish for my boys and all my loved ones to have people in your life with whom you can be real and honest and true and loved anyway we can make all the money or plans or take all the precautions in the world but in the end the only thing we can be sure of when the chips fall is our own truths and the honesty with which we lived our own lives leave a comment supporting their dreams and date night february 25 2019 filed under adhd autism family life on the jay train marriage special needs kids the jay train 11 34 am tags adhd art autism finding your passion following your dreams mom and son date night stem support i love the arts but i am no good at doing most arts and am only passably creative i also am not good at technology i can hardly ever even get our tv to turn on so of course i was blessed with kids who are into both those things jay is my creative and my artist and ace is my stem kid meaning he s into science technology engineering and math i know a lot of parents who try to make their children into something they are not often parents try to live out their own dreams through their children i try really hard not to be that way i mean i d love it if my kids were naturally really good at sports or were super talented musically because that s what i always wished for myself but those are just not their gifts as parents shaunie and i are constantly looking for ways to support each boys specific interests a couple weeks ago we tried a thing for ace it seemed like he and that group would be a good fit considering the kinds of activities they do but it was a giant fail and pretty much a waste of a saturday it happens at least we had gotten a free day trial so no money went down the drain last week i took him to another thing this time around there was no free trial if you wanted to do it you had to sign up for a 6 week program and pay up front once he found out about it though he really wanted to go and so we took the plunge it was a hit and he can t wait to go back and so i won t mind at all driving him there every friday and busying myself for an hour and a half while he lives his best life with other like minded kids and adults who know their way around a computers 0 s and 1 s following his class we got fast food and went home to sit on the floor and watch a tv show that only the 2 of us in our house are interested in while ace and i were at home having our fast food and tv date shaunie and jay had gone out to dinner and to see a movie i want both boys to know that we will always do whatever we can to nurture their dreams but it s a little harder to find artsy things for jay ongoing art classes for example are not really a thing at least not any that we ve found in our area shaunie has found something though and we ve signed him up so in a couple of weeks he ll get a chance to spend a couple of hours with his kinda people the kind who can draw and paint and who want to learn about brush strokes and shadowing i truly hope he loves it in the mean time we ll keep our eyes open for more art comic book writing programs he can be a part of and we ll keep having mom and son date nights whenever we can cause those are pretty sweet leave a comment unscheduled fun february 15 2019 filed under adhd autism family life on the jay train marriage special needs kids the jay train 11 25 am tags adhd autism family family fun family time life parenting raising children we have a lot of fun together as a family we go to trampoline parks and to shows and museums we plan beach vacations and camping trips and in the next couple of weeks we ll be going to the circus it seems though that having unscheduled fun with the kids is getting rarer and rarer you know what i mean by unscheduled the times when you don t have a plan but you end up building a fort out of sheets and pillows or making funny hats for stuffed animal toys the regular free every day fun now that the boys are 11 and 12 gasp our at home time often revolves around making sure that all the things that need to be done get done the dinner and the homework and the chores whatever extra time there is gets used up with me binging netflix and them playing video games i know that one reason for this is that building forts and making play doh pies just doesn t cut it for pre teens but i also think lazy parenting is another reason i ve been at this parenting thing for 12 years and i m tired tired physically yes but also tired of putting legos together and pushing trains on tracks you parents of older kids remember all the floor time you used to spend when you have a new baby everything is so exciting you want to spend every minute with them teaching them and watching them and exploring with them you love going to the park and pushing them on swings and you love hearing them giggle when you play peek a boo you d do anything for that giggle you absolutely love feeding them pureed green peas and seeing the mess they make and you marvel at the green poop that follows after a while though you begin to love getting back to yourself you don t love your children any less not one iota but you love that your children can now entertain themselves and make themselves sandwiches you love that you can roam the target aisles in peace and don t have to spend any time looking at stupid transformers that cost too much for the 10 minutes that your child will actually play with it even though they are telling you that they need it and will for sure this time play with it for eternity how much together time is the right amount i want us to be close i want our bond to be strong i want the boys to have a joyful life full of sibling and parent interaction i want me time i don t have the answers i am playing this all by air i will say though that last week shaunie and jay baked some cinnamon rolls together it was nice also one day last week i put my phone down my feet up and ace read me a story it too was nice then this week shaunie had to go to new jersey on some family business on wednesday evening jay and i sat together and assembled candy grams for his class for valentines day while we were assembling we talked just he and i we don t get that a lot with one mom gone the remaining 3 of us ended up having a slumber party in my room we are not a co sleeping family so this was a real departure from the norm plus it was a school night what it was such a hit that we did it again last night i really hope that we re getting it mostly right i hope we re not being too hard on them but pushing them enough i hope we give them enough of their own space while not making them feel alienated i hope we force them out of their comfort zones often enough to spark an adventurous spirit while honouring their own specific interests i hope we enforce necessary routines while allowing for and even encouraging flexibility and spontaneity do all parents feel this way how do you guys manage it when the ...
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