Where is God in Severe Autism

[charlietuna34]

Easy answer....god doesn't exist. You're retarded if you believe in this.

[MsCrystalgrace]

Has he ever been tested for or diagnosed with Lennox Gastaut syndrome? Did he have West Syndrome (infantile Spasm) as an infant. I'm wondering because of the severe seizures and he's severely mentally and developmentally delayed. He has severe autism yes and severe cases often involve another disorder, I have seen on other videos he was tested for Fragile X Syndrome, Lesch-Nyan, etc.

[kgaccount]

@MsCrystalgrace Yes, has been tested for all, including twice for fragile X and Lesch Nyan. I often wondered about lennox gastaut too, due to seizures but was told he doesn't have. It's weird cuz our non autistic teen (his brother) developed seizures suddenly for no apparent reason at puberty, and genetic testing showed nothing. So confusing. His official diagnosis is severe to profound autism with epilepsy and self-injurious behavior.

[Susanlucena]

PLease don't think I am trying to be a smart-ass, but I am just curious as to why, once Jamey settled down on the trampoline, you never let him stay there and relax. Was it too hot there? Maybe you could have rigged a shade there if he was content, rather than move him and risk more SIB. He is such a wonderous soul. There is so much in him trying to come out. I wonder, too, when he looks off in the distance, what it is he really sees. God bless you all, never give up hope.

[kgaccount]

@Susanlucena Yes, it was hot out and he may have had to get meds, not sure, it was a few years ago..

[Shoes454]

he looks 18 in this video.

[irabhulka]

bless U!

[philippamoney]

I wanted to say how handsome Jamey is. When you zoom in on his face there is such depth to his eyes. He has the features of a model. Stunning young man. Bless you for being such a strong advocate for him as well as other families with persons on the autustic spectrum seeking the help they need and deserve. Its as though youre screaming at the top of your lungs and too many 'experts' in a position to help become increasingly selectively hard of hearing, if not totally deaf...

[kgaccount]

@philippamoney Thank you. We think he's handsome too! And we have great news now. Since July of this year, we began a novel, emerging treatment in autism: nicotine patch therapy. At first, I was skeptical, but the research gave me a clue: nicotine patch can elevate choline in the brain. I flashbacked to an fMRI done on our son, which I remembered showed blunted choline. Hence, it is possible nicotine is restoring acetyl choline in his brain and helping him focus and stay calmer.

[philippamoney]

@kgaccount That's amazing! I would never have dreamed of making that correlation re: Choline and the patch. Has it had a positive effect on Jamey or is it a little early to tell? I imagine he is sensitive to treatments/medications and it would have to be introduced to him slowly. I sincerely hope this proves to be beneficial for all of you-I've watched many of your videos and you are amazing with him; imagine the progress for treating autism if more 'professionals' were as dedicated as you are.

[lindyloulou334]

@kgaccount I HATE YOUR DOG!!!! JAMIE IS IN A STATE OF MIND. THE DUMB DOG IS RUINING IIT!!!!!!

[DavidAPyles]

I'd look at his medication regimen again. When you get 3+ medications, you're generally treating side effects and interaction effects. Keppra is notorious for causing agitation and aggression. Anxiolytics can cause paradoxical effects--they can either calm or be disinhibiting. There are a number of good behavior analysts in CA, but it's a big state. There are varieties of seizures that are associated with SIB, aggression, running, laughing, and other behaviors--it's worth looking into.

[kgaccount]

@DavidAPyles Yes, Keppra can increase behaviors, but it's also a racetram, which can sharpen focus. So, if you can through initial side effects, it's a great seizure med. That said, you are very correct in having to alter his medication regimen. We are constantly trying to find RIGHT combinations where you aren't just chasing side effects. Difficult, but NOT impossible. We're getting closer. And ironically, his seizures often bring him OUT of compulsive SIB, weird....

[MassageNMotion]

Bless you all, I shared your video on FB with others so hopefully their hearts can be touched too.

[dclark12553]

Do you think cannabus will help?

[kgaccount]

@dclark12553 I used to be totally against cannibus, but when you are going on 7 days of intense, perversavie self punching and doctors, police, fire and ER services can't help u stop it, what then? Yes, it's certainly a consideration, but I am still leary of it, as it seems to be in the same line as other drugs.

[gunotweside]

LOL @ failigion XD

[jimigirl38]

What a beautiful beautiful son. My son is 18 with autism and terrible impulsive aggression..he crosses his legs exactly the same..How cute.

[chip3553]

my son just turned sixteen. He has scars on his face so severe from digging his own flesh .I will put you and your son in my prayers for a cure for this God forsaken disorder that destroys the lives of the entire family. One day follows the exact same as the next, yet we must continue to put one foot in front of the other and continue. Thanks for sharing your life with me. There are many of us out here living similar lives.

[kgaccount]

@omarish5 Calm down Omarish. Keppra, Lamical and clorazepate aren't heave drugs. Nor is garlic cod liver oil, etc...what the heck? Clearly, U don't have a clue. Thanks for stopping by.

[omarish5]

u have him on 3 medications that are very heavy fuck! is this easier for u or him shame!

[omarish5]

what medication is he on?

[kgaccount]

@omarish5 Keppra, Lamictal, clorazepate, multi-vitamin, selinium, garlic, L carnitine. Cod liver oil.

[allenlesley66]

again very touching..so difficult for you and your family...i am hooked and hope i see jamey stop his sib.....i do feel sorry for myself some days and the way you cope just gets me right back up there and ready to fight another day ....my posetive vibes are sent to jamey and your family...and all the brave familys who have to cope day to day with a difficult routine...hang on in there...

[healthychoice321]

I am a Lead Behavior Rehabilitation Specailist. I work with people with Autism with behaviors. God bless you for doing a wonderful job with your son and educating others that this is very difficult to deal with. You are in my prayers and if you need anything at all, please do not hesitate to let me know.

[kgaccount]

@healthychoice321 Thank you for your prayers. That means more than anything!

[ebaymamaqueen]

your a damn good mother and i am sure your son loves you more than you will ever know. your in my prayers.

[skittb89]

notice how he can't look into your eyes for longer then a split second. it's not that he's thinking. he just feels incredibly awkward & doesn't know where to look.

i feel his pain...

[Treehuggerapryl]

I'm the single mom of a 20 year old girl with severe autism. She's non-verbal, self-injurious, and very aggressive.

I just got internet access so I am now realizing that there are other people out there suffering like my daughter and I. So many. Too many. Not a day goes by that I am not crying. Bless every one of you. May we ALL have peace someday.

April W.

[kgaccount]

I'm so glad my videos can show you that you are NOT alone...this is really one of my missions....to show others who may feel isolated, depressed, angry or otherwise down that you aren't alone, others with severe autism KNOW what you go through and we are connected through spirit....and will strengthen and encourage one another...we will make it...we help our kids no matter what!

[akitaakita2]

My autistic son loves his dog, and your little dog loves your son, maybe you should see if a dog trainer can help you develope that relationship to help calm him?

[MiraculousMoments]

When Jamey had the myoclonic jerk, and the dog sniffed/licked him, maybe the dog was reacting to it, and licking was the dog's way of comforting Jamey. It is known that dog's can pick up on epileptic seizures.

P.S. What was the song called at the end of the video?

God Bless,

Angela

[kgaccount]

Song at end is "Give until there's nothing left" by Relient K

Good point about dogs sensitive to seizure activity....I should have the dog sleep in the house with us, as a lot of seizures occur at night...

[cmilotz]

Everything that we have in place for Danielle has been a struggle . Through a dds waiver through inland regional we have state funded medical . Even though she has a ppo and an hmo this covers things like diapers EPSDT hours with an Lvn 144 a month Have you been advised about this . I know that Even Inland regional cannot be as forthcoming with some of this stuff. Everything is a fight. I would love to give any info you need.

[kgaccount]

Thanks for your message...I was never told about EPSDT until I took Regional center to a Fair Hearing to provide in home nursing supports after our son was injured in his group home....and even then, I'm told, "there's a waiting list." Seems there;s always a waiting list, .there's all these programs, and billions of dollars funding services, but it's strange how parents seem to not always receive them......where does that money go? Investigative news reports have exposed a lot of corruption...

[cmilotz]

have you ever heard of Lenox Gaustau a seizure disorder that creates constant seizure one you see and ones you dont see . I dont think our daughter feels pain like other children. she is severly autistic also she will bite herself and hit her head.. Not as hard as jamie does. She will do it when she is angry or frustrated. I think she just might be slighly more functioning than jamie.. I did notice that they eat the same way open handed and both sit in the sam yoga like poses

[kgaccount]

How interesting, yes...Lenox Gestaut...I have researched that....I think medical literature doesn't point to there are various levels of this, as well..as the literature describes it as this horrific type of epilepsy, but I don't think it's always like that...my son has not been diagnosed with this...but that doesn't mean he doesn't have a variation of it...interesting our children eat and sit the same....

[cmilotz]

Our daughter is on a combination a triliptal and lamotrigine at this time she was on phenobarbetrol from 2 years old to maybe 3 yearsago Jamie and Danielle make alot of the same movements AND SOUDS Danielle is very vocal though non-verbal. Her aggresiveness is coming out more now she isolder . she is 11 . Jamie is a very handsome man and at time he has a very angelic look in his eyes. these kids are fighting to break out . he is very loving and playful like Danielle.

[kgaccount]

Our son's has several brain scans....the only thing he hasn' had is a pet scan....and a few genetic tests that are coming out ......I push for everything...but it seems there are still little answers....it's as if all the reserach, task forces, seminars symposiums and money that goes into fundraisers for autism doesn't make much difference for the actual families living with autism....

[cmilotz]

Danielle has had some very extensive dna testing through Baylor and everything has come out normal. Brain scans mri genetic everything comes out normal.. She has the mental age of about 18 months. She is 11. When she was born there were no signs except for developmental delay and now that we look at pictures we can see the blank stare in her eyes Have you heard of E.P.S.D.T. HOURS through the state on a dds. waiver through inland regional they do not include family income. I have info

[momofxantyce]

Have you tried hyperbarrick oxygen treatment? They make the huge ones now that people can sit in..you don't have to lay. Are you seeing a DAN dr?? Had brain scans done? This is where it seems absurd to do only therapy. These kids are having medical issues beyond our understanding. I still can't for the life of me understand why the answer from dr's is "speech therapy." It is so much more for many individuals...including my son.

[happymark1805]

I hope someone will find out why his does that, I don't think he wants to do that but he is just 'traped' in a situation he can not control.

[iamacoolkorean]

im still praying for him intensely. i know this is not eassy but i have a deep feeling that there will be an answer sooner, somehow and somewhere.

[mikeypwn]

So no one has given you an answer as to why he is hitting himself?

Well I guess it could be a number of reasons..Attention, escape, sensory stimulation etc...