Severe Autism: Case That Requires Extreme Support

[Elmgems]

When people say they can't understand why a parent of a Special Needs child commits murder-suicide, I explain it to them, but your videos would be a much better lesson. I'm amazed at your strength!

[user19191]

As a casual outsider, what are people like me to do for families with autism? I mean, if I knew one of my neighbors just needed someone to take care of their child or adult child to give them some much-needed relief, I would. But I feel like it's none of my business to even offer such help, if the opportunity even came. BTW, I hear the frustration in the mother's voice. Pretty understandable for a parent who feels they can't help their child.

[melindablack19]

I have a little brother who is Autistic as well, my little brother does the same thing, he tends to hit himself in the head also but doesn't have to be restraind. My little brother is 20 years of age, and yes it is hard and stressful to deal with.

[amymv74]

I just found your page and am can't wait to

Catch up. My sister is 27 and severely disabled with autism. I was blessed to grow up learning acceptance and compassion. My sister is now able to teach that to my son.

[avidgames91091]

don't listen to autism speaks because they do nothing to autism but harm it with it's ineffective and harmful treatments in thinking that they are one step closer to cure autism but in reality it would be death to the child.

[jaffles1145]

this is better than nothing

[aariaffxi]

The pool is seriously like a gift from God. Haha.

[ThePaytorRyan]

I completely agree with you about the bs about autism speaks. But I think you're looking at your situation selfishly. Your job as a parent is to give your child what they need. And when you say you have no lives, your son is your life. He needs you and I just ask you to look at it differently for his sake. I have the highest respect for autism parents. You guys are truly inspirational. I'm going into the special education field and I hope it's as rewarding as I've seen so far. May god give you

[NathanShadow5]

My heart goes out to you!...I too have a 'severely' Autistic son who rarely sleeps, hurts himself often by biting himself or slamming himself onto the ground and hurting his head. His arms look like someone has beaten him, bruises all over and NOW he is trying to bite his siblings and myself. Very tough job lady! I know. I live it as well!..My prayers go out to you and your family.

[kgaccount]

@NathanShadow5 Hi Nathan, yes, the rarely sleeping bit...so understand this difficult situation. I hope your son is doing well. FYI: A few months ago I found a karate helmet that has thick paddening around ears. This has better protected him during extreme head punching episodes, though these episodes have dramatically improved since July, when we begged doctor to prescribe a novel, emerging therapy: nicotine patch. Who would think nicotine would improve behaviors?

[Strwbryblnde92010]

I too have a son with Autism although his is severe it is not severe in the same way as Jamey's. He does " chuck" things when he gets pissed. But I have been blessed as far him not really mutilating himself unless he gets hangnails. Then his fingers are a mess!

As far as services, I AGREE!! It's a bunch of BS I have never had anyone from Autism Awareness or Autism Speaks call me either! My son will be 14 in July and he is about at a 3-5 yr old level (don't get me started!) and he, well you n I

[Lindseychan]

I have the deepest respect for you and your family. I can't even imagine what that would be like. My cousin is autistic, not nearly as severe as your son, and I know how hard it has been on our family. It takes a community like you said. I just pray that you guys get the help that you need for your son and others like him.

[princesscaesar]

amazing family! .... i noticed in alot of your videos that jamey is wearing what looks like headphones ... if i may ask howcome he wears them? do they help him ... i still cant get over how amazingly beautiful his eyes are

[promiseIsaih60]

The U.S. Department of Justice has handed down an indictment against a former CDC scientist who led research studies that claimed to disprove any link between vaccines and autism.According to government documents, Dr. Poul Thorsen, one of the key researchers in "disproving" any link between vaccines and autism, allegedly defrauded the scientific research community of over one million dollars. See NaturalNews*cm

[kgaccount]

@promiseIsaih60 Oh the controversy continues....I don't doubt that some vaccines can damage the brain. Or trigger seizures. However, I don't hyperfocus on vaccine damage to my son, as I have no concrete proof this caused his autism, epilepsy or self-injurious behavior. Still, I do not give him anymore vaccines, but I'm not against vaccines. I think if we could predict WHICH children or adults would have a bad reaction, that would be helpful. No doubt, some people have adverse reactions.

[promiseIsaih60]

@kgaccount Well, it's good you don't 'hyperfocus' I think it's quite a tragedy that by the age of 2, most American children receive well over 20 shots. Thank God I grew up in the 70's & we might have gotten 10 our whole childhood altogether. They are trying to get it over 50. I also remember getting all my shots as a child so we didn't get them as infants, thank God as I wouldn't give my dog or cat that many.

[kgaccount]

@promiseIsaih60 I agree, there is strong evidence that vaccines trigger severe adverse reactions. The children or adults affected by these reactions are not adequately studies. Because it sheds bad light into the safety of vaccines. That said, it is critical we develop tests to show which children and adults with autism will have a bad reactiion, and which will not. Autistics often have neurotransmitter dysfunction. Many anti--psychotics only exacerbate these reactions. We need alternatives.

[monkiefly]

My son has self-injurious meltdowns, too, and the only thing that I can do is hold him, physically restrain him until it passes. I wrap him in a hug and we just ride through it. It's hard, he can't control it at all and he's *so* strong, and I end up getting hit and kicked in the process. My boy is only 3. It terrifies me to think of what I'm going to do when he's too strong for me to hold.

[planobunnybob]

God has given you and your family heart and strength beyond measure...because James needs that. And you are right on the money; how about a little more funding for in-home care for those who really really need it? Prison inmates have to have their cable tv and fitness equipment, but your family has to go without the skilled care that your son so obviously requires. Hey, Autism Speaks! How about some more help for this family?? They are do-gooders doing nothing much.

[jemerson722]

Preach it, sister! Autism is not a one-size-fits-all type of disorder. What I go through with AS is totally different from one who has severe autism. This is what many people do not realize. We should make it mandatory that every congressperson, every politician spend a week with people with severe autism and other special needs. That'll make them eat dirt.

This is REAL autism awareness! Keep up the fight!

[colorguardxgurl2007]

I really appreciate you allowing the general public to view a piece of your son's world. I wish that every person in government that makes important decisions regarding autistic children and their families would have to view this video. I am currently a pre nursing student and I might be changing my major to social work with a minor in psychology. I hope that I don't fail people like your son or others with autism or any developmental disability. We owe it to them to get it right.

[colorguardxgurl2007]

I really think that this movie needs to be shown to the heads of people who make decisions that impact all families with autistic children. Or even better, have them spend time with your son. I think it is awesome of you to let the general public into your world; what you have to deal with everyday. I'm currently a pre-nursing student, and I may change my major to social work with a psychology minor. I hope that whatever I decide to do that I won't let children like your son down.

[jhartist123]

You are one TUFF woman! My hats off to you. I know that doesn't help but by showing this on Internet you are reaching people. I made a negative comment on a video of another boy who looked just extremely violent and it should be removed because it hurts autistic people by makeing them look extremely destructive and dangerous. I think the spectrum hurts the cause.

[carol3hawks]

It seems Autism speaks....only wants the cute and easy going children.

[444nice]

I'm sure you've tried everything for this young man. I haven't read all of the posts so I don't know what you've tried. I'm sure everyone has tried to give you advise. Here's mine anyway-white noise, music (try all). You may want to go beyond the normal psychotropics to marijuana, mushrooms, and/or PCP. I think that this young man's extreme condition calls for extreme measures. Maybe some of these drugs could alleviate his suffering. This is not a joke posting.

[kgaccount]

@444nice PCP? Really? Uh no. Maybe medical marijuana. Maybe. But no way PCP or mushrooms. Why on earth would we want to insult the brain with these dangerous drugs? How would they bring relief? I can see medical marijuana perhaps a plausible consideration, especially if he were losing weight and facing G Tube, but psychedelic drugs are extremely dangerous to the brain.

[444nice]

@kgaccount Hi, I appreciate your comment. I was very saddened by the videos of this young man's struggles. I just thought that maybe some of these drugs (illegal or otherwise) might help to alter his brain chemistry in a positive way. Just as hyperactive children receive doses of the stimulant Ridilan, I figured that something, whatever it was, might snap him out of his horror. His mother has tried everything, and that is why I added my opinion (extreme, I know). Anyway, it's good to talk about

[MrBigbosslady]

Everything you have said is so true. WERE IS OUR HELP! Love your videos

[dclark12553]

I think that SIB can be annoying, and disturbing, however you cannot stop it ourself. It is like trying to stop a train.

[FTWinnable]

I agree. AutismSpeaks IS bullshit.

[kgaccount]

@FTWinnable It's not so much that they are BS, it's that I'm so tired of all these groups that don't directly help individual cases and WASTE years talking and talking about how to cure autism. Now that is BS. We don't need cures. We need support so the autistic person can reach his or her highest potential and be free from things like savage self-injury.

[cyclops61008]

go jamie's mom@+!

[ClassyGirl07]

Autism experts aren't experts; they're just a bunch of cavalier buffoons with diplomas that say they're licensed to study whatever disease they desire. They think they know autism, but all they see is autism from the outside. They don't see the inside; they don't have autism henceforth they're not ALLOWED to say what autism feels like. Who do they think they are -GOD? I have autism, and yet they can't even tell me why I'm "not eligible for certain therapies". What do I need? A Golden Ticket?

[kgaccount]

@ClassyGirl07 well said!

[deborahdreamer1]

I am in exact same position except my son is 6 and able to walk/run, no support, no nurse's, family was the first to turn their backs, I couldn't even get child protective services to help me after my son figured out the locks , ran down the street, after taking all his clothes off which he does 20 times daily,usually I can keep him literally locked in our house unfortunately, that means the whole family also stays locked in the house- oh yeah that was child services answer better locks

[kgaccount]

@deborahdreamer1 OMGOLLY! Child services SUCKS. Most the people there are so out of touch with reality of autism they should stop embarrassing themselves and just stay away. They have NOTHING to offer you. Our cases are way outta their league. All they do is make stupid suggestions to make it appear as if they helped when all they do is create more chaos and leave you with nothing more than when they first invaded your life. Useless. They'd be better off coming over and cleaning your toilet.

[rqshepherd]

this is so true. its a damn shame too. my son is 20 and autistic and I know where you are coming from. by the way it is a nice pool.

[kgaccount]

@rqshepherd Thank U. Pool was answer to prayer, so we could have somewhere besides bath for water therapy for Jamey. As U can see, he LOVES water. I should be more grateful. I often forget how good God is and has been to us, in the midst of so much pain.

[ebaymamaqueen]

this is just sad and typical. my favorite is the look that the social workers or other public admins give that says, 'just go away so i can pretend you and autism does not exist'. most of those bastards are just there to collect a check. they don't care. the sad truth is society does not want to be reminded about our 'undesirable children'. God i could just vomit now. sorry but it is heartbreaking to see what you and your son are going through. i will keep my fingers crossed for you.

[christschool]

For me, this is f'ckn heartbreaking. Have you had any migraine medication prescribed for J. ?

Staring and meltdowns are shared with us as well. We gets lots of that.

You forgot to mention that ASAN doesn't give a shit about LFA like J. Hey, they don't give a shit about anyone with autism that has difficulties, even the moderate and HFA.

Nice pool by the way.

[topmate78]

thanks for showing how you live with jamey

[earthdragon124]

Why does he hit himself? Does he have painful sensations in which he cannot relieve without hitting himself? Can he feel pain at all?

[kgaccount]

@earthdragon124 He's what some in autism community call "behaviorally fragile autistics" or BFRAPS (behaviorally fragile autistic person) which means the entire world and everything little thing from sounds, comfort level, etc...can tip him one way to another in a matter of seconds or hours....it's always a battle to keep his "self-injurious and seizures down" IRONICALLY, when he isn't having seizures, his self abuse skyrockets

[kgaccount]

@kgaccount Well, not always skyrockets, but it seems when his seizure activity is best controlled, he is more alert, and as such, shows extreme bouts of sib...what a shittly trade off ....