tag:blogger.com,1999:blog-5362113364349699326.post5831562590474081408..comments2023-09-22T13:48:28.540-04:00Comments on The New "Normal": Living with Autism: Autism- Hate and Judgement From a Surprising Source- Other Autism ParentsJennyhttp://www.blogger.com/profile/06479192285933054835noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5362113364349699326.post-40224021721843386682015-02-12T10:46:44.450-05:002015-02-12T10:46:44.450-05:00I blame the insurance companies and medical commun...I blame the insurance companies and medical community for not getting their sh** together with changing systems fast enough for a chance at rehabilitation in any form. Pure apathy in my opinion and a real true violation of medical ethics in general. That is why the community has reached for any available resource that is not related to losing hope in their own children. Rehabilitation has been in process for decades in hospitals for brain injuries why is developmental delay not viewed in the same light? It is surprising how much people are the same from a standpoint of biology. I am highly disappointed in the medical community and its lack of leadership.activelyshapinghttps://www.blogger.com/profile/11452910926739650625noreply@blogger.comtag:blogger.com,1999:blog-5362113364349699326.post-24289852486995094132014-09-21T20:18:43.145-04:002014-09-21T20:18:43.145-04:00It seems to be there is more shaming and pressure ...It seems to be there is more shaming and pressure on the moms who don't honor and celebrate autism with cheerfulness and who are too burnt out to try every new diet, therapy, supplement etc.. My child has been in mental hospital 17 times, he was kicked out of his special ed program (put on homebound) and that was with a lawyer and advocate present. He attacked the kids in wheelchairs. I did a color coded level system behavior mod program for years-- every activity/toy was was color coded, I did the picture schedules, the sticker charts, speech and OT ttherapy, paid to have an ABA specialist come to our house, I fed him his quinoa and spinach, organic meats and gluten free popcorn-- this did not change his out of control behaviors. I admit I did not control what he ate at school or at grandma's house- I tried but his teacher quit in the middle of year-- he kicked her in the stomach, he also hit a woam 7 1/2 mo pregnant w bookbag, bit another lady in chest, attacked toddler next door .w/o provocation. , etc..the list goes on and on. regardless of what he eats or not- I do feel torn and mommy guilt-- I got the psychiatric facility to release him in my care (he is 14)- He was there for 13 months -- I live isolated alone in a little house on top of mountain; I bought this litttle house just for him. this was the only way I could take him back-- if I found an affordable house in the middle of nowhere-- no neighbors to attack. And he can scream on the front deck about imaginary spiders at the crack of dawn wo concerned neighbors getting involved. I walk on constant eggshells. He is on shortened school day. I pick him up before lunch and then we are homebound on top the mountain together- He tried to crash my car while I was driving 60 mph the other week. I'm sorry but I have decided to let my child eat icecream. I have recently reattempted the GFCF diet , but he would not eat the GFCF breakfast lovingly prepared, and then got Trix cereal at school. The school has offered to cooperate if I do want to do th diet but I am afraid of what he might do if denied his choice. Living/Teaching a child with ASD is like terrorism. You walk on eggshells and pick your battles to avoid explosions and people getting hurt. I can't try or give up anymore. If I don't brush his teeth, they will rot. He still gets diaper rash. He is out of touch w reality though he is quite verbal. He talks to me like garbage sometimes and I just have to take it. I asked him to carry some cans of ginger ale in the house and to spite me he busted them on the ground and came in laughing with the can spraying all over the hall. Even if I controlled every morsel he ate, it would still be like this. I hear an undertone of judgment despite your restraint to not say anything about the big gluteny bun. I feel numb but that is the only way to cope with this. I can't expend any more hope or emotion on this. This is not some unique trait to celebrate and honor like some indigenous peoples film festival. I'm too deflated to be cheerful and celebrate. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5362113364349699326.post-86112159636372012562014-05-06T07:28:01.981-04:002014-05-06T07:28:01.981-04:00There are hundreds of “therapies” for autism, and ...There are hundreds of “therapies” for autism, and for each one you will find someone swearing that it is effective. Truth is there is a huge parental placebo effect and the more you put in, the more will "see" some changes. Best is to talk to parents of teenagers with classic autism, they will have tried GFCF diets, hyperbaric oxygen, B12 shots, supplements, homeopathy, ABA, music therapy etc. Save yourself a lot of time, upset and dollars and see what they have to say.<br />Parents of kids with ASD can get so involved in autism they lose touch will reality. Best is to hang out with regular parents and their regular kids. There are some very nice NT kids who are just great with kids with special needs. Putting a bunch of kids with special needs together does not exactly help them with their behaviors; they will just learn each other’s “odd” behaviors.<br />As for the “therapists” and “doctors”, they have much in common with the ASD parents, they cannot accept any opinion other than their own. In their opinion, they are right and everyone else is wrong.<br />Enjoy your kids while they are young, and forget about autism.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5362113364349699326.post-36202233469129900272014-05-05T16:25:39.369-04:002014-05-05T16:25:39.369-04:00Good post. I agree with you...but I see that it g...Good post. I agree with you...but I see that it goes both ways. I have been around the block for a while. I see how the Warrior moms shame the other moms who don't do biomed...they call them lazy and that they have given up on their child. Just check out the facebook pages of these groups and these "leaders" - it's a daily thing. At the same time, I am all for acceptance, but dammit, I would never choose this for my child. I advocate and push and try all sorts of different methods and therapies. I am very engaged on the local level and in many facets. Just because we no longer pursue biomed, doesn't mean I am not progressive or I don't care or I just accept my kid as he is! This community is so polarized, it's maddening. We need to stop criticizing one another. thanks for the read!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5362113364349699326.post-15515518912158985522014-05-02T23:11:22.469-04:002014-05-02T23:11:22.469-04:00I know it is not my business so I am sorry if I...I know it is not my business so I am sorry if I'm wrong with it. But couldn't your parents give you two, you and John, a possibility to have month's vacation once a year away from your every day chores and thoughts and care for your children? They or other relatives of any of you two, maybe could live with the children for a month in your home so you could have a rest. Because from post to post, you Jenny look very tired. If I was able to see this, they could too...<br />If I am wrong, just delete it.Anonymoushttps://www.blogger.com/profile/12285993874597886245noreply@blogger.com