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Old 06-19-2005, 11:58 PM   #1
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caliny222 HB User
Unhappy Please Help: My poor parents & autistic 16 year old brother....

How is everyone tonight?! Happy Father's day, by the way....

This is what's happening..and each day..it's tearing me apart. I just moved back home from college (I graduated last Saturday) and I have a great home - two great hard working dedicated parents and a 20 year old sister and a 16 year old brother. My brother is autistic and it's gotten worse as the years went by. I've been away from home for 4 years at college so I guess I'm not used to all this. It hurts to see all this pain, stress and hurt my parents go through every single day and night of their lives. I knew his case was bad...but wow...it's gotten to the point where it's unbearable and unbelievable.

I remember when he used to hurt himself - break windows with his head, tear away at his skin until his flesh was bloody, twist his fingers until I see it actually hurting him...it's almost like he's possessed in some way. He still does some of those but his habits kindof mixes. It's so weird how precise he is with what he does. We can't understand him. He doesn't talk and he doesn't communicate...we can only feed him to make him happy. We've spent hundreds of thousands of dollars taking him to specialized schools, doctors...medications....NOTHING works. He snaps out of medication and continues breaking things. He's so violent...that my grandparents are afraid to go near him because one time he had my grandmother by the hair and wouldnt let her while trying to poke her eyes.....It's truly sad.

Currently, he has developed a new habit. He makes loud 'motorcycle' noises - no seriously. At first, everyone thinks its a motorcycle but its a very raspy deep loud sound he makes with his throat...very loud. He does that every single second of his life - I wish I was exaggerating. He never gets sick of it but we do..it's so frustrating. He does it at night when he doesnt sleep usually from 3am to 5am. My parents work Monday-Saturday 8am-6pm. I can't imagine how they can live like this. I can hear him and we have a pretty big house...and my room is across the hall...usually I cant hear anything. He keeps me up too. Along with that, he still constantly hurts himself. We've went through many babysitters..but no one can take care of him. It's come to the point where we can't even take him out anymore because we fear that we might get hit with another lawsuit because my brother just randomly goes violent on anyone.

As I said, my parents work 6 days a week and come home to him..and can't leave the house for the rest of the night. Even at home, there is no such thing as a peaceful night. In fact, I don't remember ONE peaceful night they've had...where they were actually happy. Don't get me wrong, they are content and rarely complain. I just wonder how the hell they do it. I commend them - I would go crazy and I think, inside, they are going crazy. But it is their own flesh and blood...what can they do? ****..it's so hard to see them like this....

In addition, I've limited myself in so many ways (academially and following my dreams of moving to NY after college) to help my parents take care of him..but he's even getting violent on me. To be honest, I'm kinda scared - he attacked me the other day. On fathers day, my father stayed home,in the bedroom, watching over him as he made those noises fifty million times and my mom was cleaning the house. I can see the depression and lack of sleep in their eyes..but I don't know what to do. It's becoming frustrating. I've only been home for a week and I am already scared of the rest of my days until I move out of here. I don't want to be selfish, I love my brother and a live in home is NOT an option that my parents would even look at. I feel hopeless sometimes. I stop living life because of how sorry I feel for my parents...like I have to suffer the same amount. And that is not me - if you knew me, I'm not like that...I'm a go-getter, driven, motivated, risk taker, over achiever. But I feel like I don't deserve to be all that when everyone back home is suffering.

I was just wondering if anyone out there knows of any kind of medication or help that I can offer my parents. Any kind of help/advice would be appreciated. It is now 11:55pm...and the noises are still going on..and my dad is cursing because he is just so frustrated. I hear my mom crying. My 20 year old sister never comes home. I kinda just don't know what to do.....Thanks...God Bless....

Sincerely,
Judy
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Old 06-20-2005, 04:27 AM   #2
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DaVinci HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

Dear Judy

( removed ) hang tough, it's not too late to help!

Last edited by moderator2; 06-20-2005 at 05:25 AM. Reason: please do not reply in reference to posting rules violations

 
Old 06-20-2005, 05:17 AM   #3
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jilliansmom HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

there are resources in your community that will help your brother, he needs TO BE PLACED IN AN 'I-NHOUSE' intensive behavior modification training, and this could ONLY be persued thru him living in a facility designed to do just that, he needs this 24 hours a day so that he can live a somewhzt normal life, it seems the situation is very damgerous and i know you love him byut at the risk of being blunt, your brother really,really needs a better doctor skilled in treating his symptoms and prescribing the appropriate medivcations to calm him down, recommendating appropriate placement AND TREATMENT for him, with this type of help and support it can be done, ,,,he needs intensive training and behaVIOR MODIFICATION BEFORE HE HURTS HIMSELF OR YOU OR YOUR PARENTS..please check also with your state autism society and tell them whay you have posted here,,,you can never givie up seeking treatment for him, because appropriate treatment means a better life for him and for your parents and for those who may eventually have to take care of him,,,iam the mom of a 15y/o daughter with autism, and i am trying my best to prepare her NOW for life without me or her dad, we do not expect our other children to take care of her in their homes when we are no longer around, it would not be fair, so we are trying to do all we can to give her the help she needs now to make her life more pleasant without us amd the lives of her siblings less stressful, we know in advance that she will ALWAYS need to be in an assisted living environment...jillians mom

 
Old 06-20-2005, 06:16 AM   #4
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Location: Chelsea,Ma,USA
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off kilter HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

My son Paul is 7 now and still lives at home but we already have him in a program that is a day school now all year , goes residential M-F at age 15 or so then assisted living apt. & sheltered workshop at age 21. Paul is 7 his brothers are 25 & 28. he has a stepsister who is 23. We have done the paper work for them to advocate for him when we are gone but have made it clear we do not expect them to hands on care for him. You need to separate yourself from the problem and follow your dreams. I know it's hard but you have a right to your own life. All you can do for your parents is to gather whatever information you can and give it to them. please follow your dreams.

 
Old 06-20-2005, 06:36 AM   #5
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marissamm HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

i thaught i had it bad with the constant violence, go to the state dept of mental retardation and ask for your brother to be put on the medicaid waiver and tell them how bad the situation is talk to the people who gave his dx, maybe they have a solution, every state is different when it comes to services,good luck you will be in my prayers.

 
Old 06-20-2005, 06:44 AM   #6
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jilliansmom HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

hi again
off kilter and the others are correct, your parents really really needs to ask the school system to help with the transitions that needs to happen in your brothers life, i have had open heart surgery and i look at life a lot differently that befotre, like others i have informed all of my daughters siblings that we know that they love her, and that also we do not want them to have any "guilt" about not keeping her in their homes...it is expected that they advocate for her and make sure she is doing ok and make all of her needs are met...i'm sure they will take her out and bring her to their homes for holidays etc, who knows, but in the assisted living homes here, the redsidents have full daily schedules to keep them busy and they are constantly programming them to take on more activities and teaching them more daily living skills to assist them in being even more independent ... PLEASE. PLEASE go on with your life, don't allow yourself to get TRAPPED in the 'pity' cycle.. you MUST live out your dreams and THANK GOD that you are able to do so... Your parents , in the meantime have to be responsible and do what is best for your sibling, THIS is NOT your responsibility.. it is THEIRS... jillians mom

Last edited by jilliansmom; 06-20-2005 at 07:19 AM.

 
Old 06-20-2005, 06:53 AM   #7
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DaVinci HB User
Re: Please Help: My poor parents & autistic 16 year old brother....

Dear Judy
Ok here's some advice for what it's worth! But first a little background...My boy now 13 dx PDDNOS, however at the 4-5 year old range was a very angry and in pain child, he headbanged, bit everyone and broke a couple windows himself. His history is probably a little different in that he had chronic ear infections and unbeknownst to me they kept returning. Therefore, over medicated on antibiotics. Once mom got a clue, I decided my darling needed nutrition big time! But how do you get it in him? I veggie juiced(ok before you change the channel, hear me out). My belief: these children are lacking all the necessary nutrients(vitamins, minerals, enzymes, amino acids etc). And even if somehow the parent/caregiver can get it in them their whole gastrointestinal system is dysfunctional. Why? mercury, antibiotics, environment, genetics, who knows? If you are in pain - acid reflux, stomachache, migraines etc etc and basically your whole life you have been like this.....how well are you going to learn to communicate?, to learn? The pain is unbelievable....my guy would go downstairs to the basement and bash his head on the concrete floor! Ok, back to the juice(no it's not the solution- it's the starting point), the base is usually carrots(beta-carotene); greens are great-spinach(B6, vitE), kale(folic acid); ginger, parsley(zinc), garlic(nature's antibiotic). Actually anything that juices well. Second problem: how do you get it in him? I started with just one of those medicine droppers(and drank the rest myself)and yes you'll have to corner/sneak up on him, moved up to a small glass.
After an initial period of resistance he welcomed the juice and today he'll get the carrots from the frig to tell me he wants it.
What else? At approximately the same time I started him on SuperNuThera(the powder multivitamin) and also DMG(it now comes with Folinic Acid and B12- more efficient and eliminates hyperactivity). Just these 2 "vitamins" and the veggie juicing alone helped tremendously - no more ear infections, no more spastic tantrums, and increased awareness. Those few "therapies" sold me on the nutritional method.
Then I got to the point of trying out different "vitamins" I had seen recommended on various sites/articles ..... soon I had a cupboard full of "vitamins" and not knowing whether he was one getting enough or two getting too much.....that's where the DAN doctor came in. This biomedical approach has helped tremendously...and I will elaborate for anyone interested. However for those starting out I highly highly recommend the juicer - and for the cost of a $30 juicer what have you got to lose?
And yes we've done the ABA, secretin, sensory etc etc and they helped a little but cost wise and effectiveness, I'd say the juicing/supplements/DAN were the best bets! Doesn't it make sense to fix the insides first?
Nutrition takes longer, so give it a good shot before giving up!

Success is a journey, not a destination

 
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