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Thread: I am at the end of my rope with my Autistic son

  1. #26
    God/dess 4everresolutions's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    You won't be his babysitter when he's 24. At that point, if he can't (partially) look after himself, the best thing to do for his best interests and yours is to put him in a group living home. You won't be able to control him at that age, and if he were to ever physically over-power you it would be bad news. But that's neither here nor there, because that's a LONG way off and it's too soon to judge where little E's life is heading. You never know when his development is just going to spike and suddenly he's capable of a lot more than you ever thought. Just do what you can today to get through today.

    Your other son will be a big help in E's life as they get older. My brother moved in with me when he was 21 - we lived in the same student housing in University. I was able to watch over him as he slowly gained independence in a very controlled environment. I've always been very involved with helping my brother and that will never change. As long as both your children know their mother loves them very much then I don't think your eldest child will feel neglected. Siblings want to help one-another, that's what we're here for. As they get into their late teens/early 20's it will probably become something he WANTS to do - help his little brother out.

    Navigating the US medical system isn't a fun task. They REALLY don't want to let you know what's up for grabs - which shows how cruel they can be. Services like this wouldn't be available if people didn't show clear need. Do some digging and make as much noise and fuss as you possibly can - you really have to be your childs advocate with stuff like this, because sometimes it feels like no one wants to do anything to help.

    Why can't you move and support yourself dancing? Would probably free up a lot of time and give you more dough to spend on medical expenses (and it sounds like a lot).

    Good luck with the bedtime dance! Don't feel guilty - you're not a dumb-dumb! Someone mentioned Jenny McCarthy earlier in this thread. I know she's a big inspiration to mothers of ASD children everywhere, but sometimes people like this can frustrate me! They're all "Coach your child constantly! Talk to every medical professional you can! Moniter their diet! Have a strict schedule that doesn't allow for ANY free time! Never get angry! If you don't do all these things then you're to blame if your kid doesn't improve!" It's too much to live up to! I mean - who are they kidding? Of course a Gluten-free diet would make improvements to an autistic childs temper - it would help lessen anyones temper! But how much extra work is that? To monitor diet exactly? No sugar, no gluten, etc? While trying to clean a house-hold, and work, and have a life and look after your children. And to schedule every single second. Literally no free time? It's not possible, because it essentially means that you get no free time. It's too much, and it's not possible. And sometimes you just want to say "I could do it, but I just don't want to put in the effort. I need a bath. I need to sleep. I need to have some intimacy with another adult rather than sit here planning out consults with doctors and planning a never-ending activity schedule".

    I get it, I saw my mother go through it. I saw her cry in guilt when people were telling her she could do more. They were wrong though - if she had done more she would have completely given up on herself, and her health and her life and her passions. She needed to be healthy and functioning if she wanted her children to be. She worked with my brother a lot and I think she did a really great job. So don't feel guilty about being frustrated. You should feel frustrated.
    Last edited by 4everresolutions; 01-02-2011 at 09:19 PM.

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    God/dess anouk.oui's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    my lil brother was the same, wouldnt talk and whenever he was unhappy with something he would bang his head into walls. we were really worried he will never be like other kids. this was when he was around 3, now hes 7 and seems grown out of it. hes still very hyper and sensitive but hes okay.
    i think mum had a social worker and he went to special kindergarten for similarly autistic children and involve them in group exercises, creative things and just lots of art / sport / drama therapy. i think the special attention of people who have seen it all before and knew how to help and give him extra attention really helped him.
    are there any schools like that in your area?
    and the social worker helped mum cope with all his mood swings n that.
    the chances are, he will grow out of it with the right care and attention.
    good luck, and hang in there!
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  4. #28
    Featured Member FiendishGyrator's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    What's his diet like? I know a couple people mentioned diet, but this has some anecdotes for either gluten free, or non-antibiotic wild meat if you can get your hands on that. It also has some suggestions and links to articles re: magnesium and rhodiola (not sure if the rhodiola suggestion had an article attached to it.)

    http://mail.earthclinic.com/CURES/autism.html

    I was gobsmacked reading the first article listed:
    "My husband, who has a Ph.D. in chemistry, got copies of the journal articles that the parents had mentioned on-line and went through them all carefully. As he explained it to me, it was theorized that a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists, some of whom were parents of kids with autism, had discovered compounds containing opiates -- a class of substances including opium and heroin -- in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested.

    In a burst of excitement, I realized how much sense this made. It explained why Miles developed normally for his first year, when he drank only soy formula. It would also explain why he had later craved milk: Opiates are highly addictive. What's more, the odd behavior of autistic children has often been compared to that of someone hallucinating on LSD. My husband also told me that the other type of protein being broken down into a toxic form was gluten -- found in wheat, oats, rye, and barley, and commonly added to thousands of packaged foods. The theory would have sounded farfetched to my scientific husband if he hadn't seen the dramatic changes in Miles himself and remembered how Miles had self-limited his diet to foods containing wheat and dairy."

    (emphasis added)



    I get that going gluten free (or gluten light-- really, if it's going to work than going gluten light is better than thinking it's too hard.) Here's one of my favorite gluten free websites which shows it doesn't have to be expensive, nor a huge brain-bender, nor a big time-user when it comes to food.

    http://crockpot365.blogspot.com/

    I'm sorry you're going through this. That is beyond frustrating, and I'm sure you're at a point where being torn down constantly by frustration, helplessness, and tiredness is just awful. I hope these websites help...or that something works.
    Last edited by FiendishGyrator; 01-02-2011 at 10:23 PM.

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    Default Re: I am at the end of my rope with my Autistic son

    youre not a bad mom. youre human.

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    Default Re: I am at the end of my rope with my Autistic son

    I have the exact same autism issue with one who is about to turn 4--really can be overwhelming. I am yet to find anyone with a viable answer, and doctors/social services/school district have tried to help, but it really just isn't working.

    I think the problem with autism is that no two cases are precisely the same, so it's hard to find a tried and true solution to the problem.

    I know that doesn't really help you, but I just thought you might like to know that I share your pain and frustration. :-(

  7. #31
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    Default Re: I am at the end of my rope with my Autistic son

    New meds for E seem to be working pretty well. It's just 1/3 mg of melatonin at 5 and another 1/3 at bedtime, but jeez tonight was pleasant! He sat on my lap wrapped up in his fav blankie and watched TV with us from a few min after 7 on! It was like having the old E back! From about 10 min after the first dose he stopped hitting us and trying to destroy stuff, but never acted sleepy like you'd expect. Just normal. Reminded me of the way Ty was in the evenings at that age!

    Fingers crossed this keeps working!

    *I'll respond to the rest of the messages tomorrow or the next day. I did read them and really appreciate the advice. I'm just so sleepy atm and am actually getting to relax for the first time in ages, so I'm being lazy. lol Plz forgive the delay.
    "I hear you calling and it's needles and pins. I wanna hurt you just to hear you screaming my name...You're poision. but I don't wanna break these chains.... I wanna love you but I'd better not touch."

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    Veteran Member fluffypenguin's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    I think you've been given some really good tips here (except for the marijuana), Just keep plodding away. The system is designed to be difficult to access, it's the same in Australia. I've had a double whammy with my daughter having schizophrenia, she's only got help 2 years ago and pretty much because of there being a disaster in our area (bushfires), her symptoms became full blown and counseling was available to those affected from the fires. We had been trying to get help since she was about 5, even the school picked up that she was, well, odd (saw several specialists who basically told us we were bad parents)
    It took my son until last year to get a proper diagnosis and finally some help for his problems. My son has Aspergers which is autism with a High IQ. So basically we have been fighting for help for well over 10 years for both of our children and copping the "bad parent" thing pretty much every step of the way.
    My son is 14 and we struggle with working out where the Autism stuff finishes teenage tantrum starts so it is very hard to discipline him. We have learnt the signs of when he is about to have a melt down, it can be quite embarrassing having an apparently "normal" 14 year old go into a toddler meltdown crying and curled up on the floor because someone put tomato sauce on his sausage at a picnic!
    Social life- forget it, I'm lucky to have a husband and the stripping is pretty much my social get out.
    My husband grieves for not having a "normal" family, and then feels guilty for wishing we had a son he could teach to do all those manly thing fathers teach their sons, there are even days when he says he doesn't even like his boy. Don't feel guilt when things get to you. It's OK to be sad, or frustrated about it all.
    Hope things continue to improve and you get more "good" days.
    You are a good mum, you have proven it by seeking advice.

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    Default Re: I am at the end of my rope with my Autistic son

    Quote Originally Posted by fluffypenguin View Post
    I think you've been given some really good tips here (except for the marijuana),
    I realize it's not practical in PJ's case, but may I ask why you dismiss marijuana? I'm not trying to start a debate, I'd honestly like to know your take on it, because I only recently say a segment about marijuana being used to treat kids with severe problems like this. It shocked me a bit at first until it was explained that the kids are usually on such a small does that they don't really experience a high or feel stoned, that the small does of THC calms them down but doesn't make them stoned or really give them any euphoria or "buzz."
    Quote Originally Posted by Vamp View Post
    As Katherine Hepburn put it so eloquently " Nature is what we were put here to rise above"

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  11. #34
    God/dess Elvia's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    PJ, I am so glad to hear you found something that seems to be working!
    Quote Originally Posted by Vamp View Post
    As Katherine Hepburn put it so eloquently " Nature is what we were put here to rise above"

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    Veteran Member Arianna419's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    I don't have any real advice, I'm sure you've done a million times more research than I can imagine. But I do have a child the same age as yours, and even he drives me crazy sometimes. I can't imagine what its like for you. You seem like an amazing mom. The time, patience and determination your parenting takes on a day to day basis must be tiring. Goodluck and we're here to support you.

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    Default Re: I am at the end of my rope with my Autistic son

    My younger brother Robert, age 12, is autistic. I was an only child before he was born, and my mom was the youngest child (and only girl) in a family full of guys. I have always been the youngest in my environments. I skipped a grade, so I was always the youngest in school, and all my cousins were significantly older than me. So my brother Robert is the only child I've ever really been around, and dealing with him every day has made me terrified of having children, in case they turn out autistic. I couldn't handle it, and I can't imagine how difficult your daily life must be.

    Though islandgirlcoco's post may have come off judgmental, I do agree that you need a break, and possibly some therapy, just for your sanity and well-being. Therapy may help you with dealing with the stress, and you are 100% entitled to having time to yourself. No one who has ever dealt with a mentally disabled child would EVER accuse you of being selfish. You seem to have a lot of guilt for the amount of stress you experience with him, and you shouldn't. It's a shitty situation that nobody deserves to be in, and you seem to be handling it better than most. You deserve a lot of help with him, and you should definitely look into all your options as far as government assistance goes.

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    Default Re: I am at the end of my rope with my Autistic son

    I don't really have anything to add to the conversation other that I admire you for being a great mother. <3

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    Veteran Member AriahsPariah's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    As the poster who suggested marijuana, I believe in natural remedies over chemicals created in laboratories. Besides, who knows the afftects of those pharmaceuticals in the long run? Marijuana is proven to aid in a plethora of conditions and is meant to be a substitute for rx meds. It is simply an option for the OP to look into. That does not mean it was not good advice.

  16. #39
    God/dess princessjas's Avatar
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    Default Re: I am at the end of my rope with my Autistic son

    New meds for E seem to be working pretty well. It's just 1/3 mg of melatonin at 5 and another 1/3 at bedtime, but jeez tonight was pleasant! He sat on my lap wrapped up in his fav blankie and watched TV with us from a few min after 7 on! It was like having the old E back! From about 10 min after the first dose he stopped hitting us and trying to destroy stuff, but never acted sleepy like you'd expect. Just normal. Reminded me of the way Ty was in the evenings at that age!

    Fingers crossed this keeps working!

    **We still had some bedtime difficulties but nothing even close to how it
    's been.
    "I hear you calling and it's needles and pins. I wanna hurt you just to hear you screaming my name...You're poision. but I don't wanna break these chains.... I wanna love you but I'd better not touch."

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    Default Re: I am at the end of my rope with my Autistic son

    So ... my son isn't autistic, but he's allergic to EVERYTHING; wheat, eggs, dairy, soy, sesame, citrus, tomatoes, all the nuts ... when I was breastfeeding if I ate those things he would break out in sores and get wheezy and cry, it was heartbreaking. So after I got him allergy tested I cut them all out of our diet and he's cured of those symptoms (well, unless he gets into something he's allergic to) and I lost all the baby weight and feel great too. Really, it's not hard to do. I know it sounds crazy, but we eat great food: meat and veggies and fruits, rice and such. Easy if you try, read labels, and think about what you eat, healthy (protein and vitamins ...) and use substitutions when necessary (rice noodles are good) ...
    my $0.02 ... worth a shot IMO to get him feeling good ...

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    Default Re: I am at the end of my rope with my Autistic son

    Hi Princess Jas,

    Just passing by and your thread caught my attention. Similar to the above poster who mentioned nutrition as a means of managing Autism, I too have heard about the relationship between the two and it made me recall some information that I read in the past that may be of value to you. The following is an article discussing how food and a strengthened immune system can aid in healing and eradicating Autistism http://healartfully.wordpress.com/20...autism-undone/ Also, there has been lots of good things said about the effects of natural, raw, plant based foods and green juices in managing condition. With further research, I hope you discover the options that can best help you and your family.

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    Default Re: I am at the end of my rope with my Autistic son

    yeah dude who knows ... it could help to get him on the right diet ... sounds hard best wishes

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    Default Re: I am at the end of my rope with my Autistic son

    He pretty much only eats veggies with a few fruits and a sprinkling of lean meat and cheese. I'm a vegetarian and breastfed him for almost 2 yrs, so he developed a taste for all the fresh veggies I eat. Roasted veggies, homemade veggie soup and salad are some of his fav's. Spaghetti was his all time fav food, but he got sick of it a while back and won't touch pasta now and he's like me and isn't a fan of bread.

    The whole gluten thing was one of the first things his pediatrician suggested.
    "I hear you calling and it's needles and pins. I wanna hurt you just to hear you screaming my name...You're poision. but I don't wanna break these chains.... I wanna love you but I'd better not touch."

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    Default Re: I am at the end of my rope with my Autistic son

    Im glad you found something that's working. I have a daughter who is perfectly healthy, but VERY strong willed and full of attitude, at 7. She would have me in tears, and I felt like such a terrible mother...just dealing with a normal lil girl.
    I can only imagine what you have been going thru.
    Best wishes....

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    Default Re: I am at the end of my rope with my Autistic son

    I am not going to put my foot in my mouth by saying something silly because I do not walk in your shoes and I cannot imagine what you are dealing with so I just wanted to send you a hug.
    "Don't cry when the sun is gone because the tears won't let you see the stars." Violeta Parra

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    Default Re: I am at the end of my rope with my Autistic son

    Good Luck on everything!!!!! Xoxo

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    Default Re: I am at the end of my rope with my Autistic son

    It does sound like you need help in toning down his behavior somehow, but I have seen nothing but terrible affects on people who decide to discontinue pill use, or even develop all type of other side effects because of them. I live in Ca where medical marijuana is legal for everyone with a prescription, i grew up in private school with ADHD kids whose parents refused pills and adminstered edibles to them instead, To add on to Ariahs post. http://abcnews.go.com/2020/MindMoodN...ry?id=11227283

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    Default Re: I am at the end of my rope with my Autistic son

    I saw this article/video on Autism fitness. It says the program aims to improve behavioral issues and enhance cognitive abilities. Maybe something like this would be helpful.

    http://news.yahoo.com/s/yblog_weeken...autism-fitness

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    Default Re: I am at the end of my rope with my Autistic son

    ^^ Thank you for the link!

    Oh, and to you guys suggesting marijuana, it just isn't happening. I despise potheads and don't buy that whole, it's not really a drug mentality. My hubbies ex bestie was a major pothead and I saw him and his wife destroy their lives because of weed, kinda changed my view on the subject. I don't do drugs myself and certainly and not putting my son on an illegal substance. Even if I did buy the whole "not a drug" way of thinking, I would NEVER do anything that could result in jail time and my losing custody of my children.
    "I hear you calling and it's needles and pins. I wanna hurt you just to hear you screaming my name...You're poision. but I don't wanna break these chains.... I wanna love you but I'd better not touch."

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    Default Re: I am at the end of my rope with my Autistic son

    Hey hun..I think first off it was very brave of you to even post this thread KNOWING some ppl would judge you and put you under a bad light. You are human...so it's natural to be feeling the way you are. I have a perfectly normal 3 yr old and omg sometimes i feel like im going nuts and its probably not even a quarter of what you go thru everyday. Just keep strong and know that ur sw family is here when ya need to talk. Just ignore the ignorance of some. lol Sending hugs ur way luv. =)

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