i am watching your videos and it is very sad to see how you go through this on a daily basis. it makes me very emotional because i have a 4 yr old son who has autism and also mental retardation . i am just watching your videos among others trying to prepare for whats next. i wish you and jamey the best .
@nadyazify Every autistic person has his or her own set of unique needs, as I'm sure you already know, so don't let anything frighten you....even if some things you'll face in future are hard, you will make it through everything because your son depends on you. Blessings to you and your son
During this post you asked about Jamey having seizures for 15mins on waking. This is common in epileptic patients with or without autism. Sleep & coming round from sleep are the most likely times for seizure activity as these are the most likely times for neurons to misfire. That's why EEGs are usually done while the person is asleep. The bouncing up & down looks more like autistic behaviour, but in rare cases may be due to epilepsy. I worked in neuro for a while & studied epilepsy @ uni.
I'm thankful my meltdown aren't that bad... But I understand what that young man is going through.
Instead of training people to kill (Iraq, Afgan and... ) we, (US) should be training people to care for our own people... Every person like him deserves proper care.
@DoraBieber1 Jamey is 22 yrs old now. I can't believe it! He's been through sooo much, yet, like many autistics and persons with Aspergers, they are incredibly strong and special people. You can never, ever give up trying to help them, because there is help. There are good people who want to help. And better therapies are emerging. For instance, nictotine patch therapy has dramatically reduced Jamey's self-injury. I asked doctor to prescribe it after horrible experiences on anti psychotics.
I am so sorry for what you have to go through and also Jamey and I can't image how tired you are. It broke my heart seeing Jamey cry! (Random) But I just love the color of his eyes.
You and Jamey are always mention to my church for prayer!
May God Wrap His Powerful and Healing Hands Around You and Jamey and Bless You With Peace.
@Crazygirl95ful Thank you. What a sweet person you are for your kind words. May God bless you for comforting those who need comfort in times of extreme stress and confusion.....
My son has meltdowns like this but he's assaultive not SIB. No amount of redirection or soothing will urge him out of it and all I can do is walk away and close his door and let him calm himself. You can't leave Jamey alone because of SIB. Retraining my son during meltdown makes them worse and restraint is the only way I'd be able to be near him with his thrashing. I don't live your life, but I can imagine. My heart breaks for my son when he has a meltdown because I can't help all the time.
Aren't there any current or even retired HIGHLY-QUALIFIED nurses in your area who could get together and provide services to people like Jamey (the most in need and at risk of injury) pro bono or at a reduced rate? Is anyone at your church or in your community able to do this and/or provide respite? I wish I could help your family somehow, is there anything we can do as viewers?
@julie575 I think more people in our Congress need to see videos like this. The don't know cases like this exist. The more they know, the better they will understand how it makes both economic and humanitarian sense to provide proper home care supports to extreme cases like this. And how funding should be based on a triage system.
Yes! Even if legislators don't CARE about the home being the LRE and don't respect the basic "human right" (for lack of a better term?) of the severely disabled individual being in an environment surrounded by loving family you would think they could figure out the financial equation! If a stable family is emotionally able (like yours) to treat the loved one with supports why on earth would they want to institutionalize them? Also, the caregiver in this video (a nurse?) is extraordinary!
@kgaccount Thank you, after seeing a lot of your videos i have gotten a "second wind" Im trying. Please keep your videos coming, Right now i feel your videos are the help for me right now. Thank You
@MrPhillipsamuel1992 He was 'frustrated." His severe autism limits his abilities to communicate what is going on. No doubt his mind is under attack and it prohibits him from telling us what exactly is going on. That's why it's important for him to be observed and cared for by a "team" of nurses, us, and others who "understand" what his unique and individual needs are. It's just too hard for outsiders to come in, do a drive by analysis and give suggestions. They don't get it,, until we show them.
Hi Jamey its me ( your friend Anna from Missouri ) i just wanted to say im continuing to pray for you and i. i also wanted to say thank god that you & your family were able to have 2:1 care that day . but jamey i would suggest not to bite cars , that will hurt your teeth . hang in there bro , im here for you and your family .
This video made me cry,his cry is heart breaking.My son has full seizures where he is not breathing for 10 minutes (diastat used)he also does alot of the bouncing just like Jamey. Jamey really needs 2:1 and the best nurses.Well THANKS for keeping us updated your videos inspire me.GOD BLESS
Thats strange Jamie seems to want to put his anger on the cars arround, I do'nt know if his brother may drive cars but it meight be that he is frustrated that he can not drive them, might be a stupid idea from me but that is what it looks like.
If that is the case he is picking up alot more than Jamie shows.
@happymark1805 Yes, a behavioral specialist told me sometimes when autistic adults begin to "make progress", or they are "learning more" or "coming out of shell" their behavior actually gets "WORSE" since they are now seeing a world around them as terribly confusing and foreign. I don't know if that's case, but it's possible. Jamey LOVES to be driven around in car and go places, but we have to have 2:1 in these situations and we still don't have 1:1 support.
will the new CNA? be with you permanently? He seems like such a wonderful fit. He also ACTUALLY CARES about Jamey unlike the other CNA. Witch of the dogs is the one who seems to respond to Jamey? Was it one of the one following him?
@ASDogGeek There is massive shortage of qualified cna's for Jamey, so found this young man as emergency back up when other 2 unqualified cnas failed. And agencies had NO back up cnas. He's a medical assistant. Yet, he's better than the cnas! Just shows how matching Jamey with right person helps. But, it is critical we have majority LVN because cna and Ma's can't give meds. I can't use state voucher for people who aren't cna's so we pay outta pocket, again!@ I'm working on new team of nurses
@kgaccount. I guess the reality is I have to personally tscreen and train each nurse who comes out and then monitor to ensure they can handle Jamey. The state can't train them. The state can't monitor them. The state can't handle Jamey. All I need is state to provide nursing coverage and I'll do the rest of their job, which is behavioral/medical and case managment things I've been doing for years anyway. Oh, Jamey has a wonderful state case worker. She's what a social worker should be: caring.
@kgaccount As a social worker, I'm glad to hear that you are getting support at least in that area. I would love to hear more about your positive and negative experiences with social workers.
I'm just glad that Jamey is ok. That day was something. Jamey is a great kid and has great parents to watch an care for him. I'm glad you and husband were out there to help and I appreciate it.
@tommyw8576 I'm sorry to hear how U were treated. Your mom obviously had challenges. She probably loved you more than U will know, but was under seige in her own mind. YES, SSRI can be helpful. We still give Jamey 5-Htp, which does help, but as I've always said, IF he gets even the slightest cold, abrasion, etc..that causes him discomfort, NO drug will stop the sib.
Self Injury Behavior can also happen with us "High-Functioning" Autistics with Asperger's Syndrome. I am on an SSRI Type Antidepressant, Lexapro which has helped, yet, as an Adult, I have myself had issues with self-abuse hitting. I was raised by a parent, my Mom, who was for decades uncontrollably psychotic. Her way of "dealing" with me & my "milder" Autistic behaviors/cognition, was @ times "violent" psychotic beatings of me, to "make me "behave correctly".
@aspie1966 One guy is my fabulous husband, who was trying to "relax" in the house, when he heard me say, 'IS HE TRYING TO BITE THE CAR?" The other is a major blessing and who came into our lives in the nick of time to provide emergency relief and support. He is a really smart, capable young man who has just amazed us with his ability to learn how to help with Jamey.
seeing him cry breaks my heart...he is soo precious and you and your family are simply amazing. i know how it is because my family and I go thru the same exact things with my brother who is severly autistic. No one will truly understand how it affects your life in everyway until you go thru it first hand.
@crystalmichellez You sound like UR an amazing sibling. U will be something and someone powerful and with great purpose because of all this suffering. It teaches you things that you can't learn outside this kind of hell.
@kgaccount And it's NOT really the autism that is hellish. It's dealing with apathy and ignorance of others that makes it so painful. These top officials see what your family and other families go through, they have the power to help, and they choose to do nothing. Or the bare minimum.
Thank you for sharing your love for your son with us here in youtube. God Bless!
You are amazing!
sketchyou 6 days ago
i am watching your videos and it is very sad to see how you go through this on a daily basis. it makes me very emotional because i have a 4 yr old son who has autism and also mental retardation . i am just watching your videos among others trying to prepare for whats next. i wish you and jamey the best .
nadyazify 1 month ago
@nadyazify Every autistic person has his or her own set of unique needs, as I'm sure you already know, so don't let anything frighten you....even if some things you'll face in future are hard, you will make it through everything because your son depends on you. Blessings to you and your son
kgaccount 1 month ago
....wow hart braking ;(
sosn2k10 1 month ago
During this post you asked about Jamey having seizures for 15mins on waking. This is common in epileptic patients with or without autism. Sleep & coming round from sleep are the most likely times for seizure activity as these are the most likely times for neurons to misfire. That's why EEGs are usually done while the person is asleep. The bouncing up & down looks more like autistic behaviour, but in rare cases may be due to epilepsy. I worked in neuro for a while & studied epilepsy @ uni.
SuperMissblueeyes 3 months ago
I'm thankful my meltdown aren't that bad... But I understand what that young man is going through.
Instead of training people to kill (Iraq, Afgan and... ) we, (US) should be training people to care for our own people... Every person like him deserves proper care.
cyclenut 4 months ago
you guys are doing very well. I wish you the best of luck!
courtneypk4 5 months ago in playlist courtneypk4's Favorited Videos
He's cute
heartsforhearts123 5 months ago
@DoraBieber1 Jamey is 22 yrs old now. I can't believe it! He's been through sooo much, yet, like many autistics and persons with Aspergers, they are incredibly strong and special people. You can never, ever give up trying to help them, because there is help. There are good people who want to help. And better therapies are emerging. For instance, nictotine patch therapy has dramatically reduced Jamey's self-injury. I asked doctor to prescribe it after horrible experiences on anti psychotics.
kgaccount 6 months ago
I am so sorry for what you have to go through and also Jamey and I can't image how tired you are. It broke my heart seeing Jamey cry! (Random) But I just love the color of his eyes.
You and Jamey are always mention to my church for prayer!
May God Wrap His Powerful and Healing Hands Around You and Jamey and Bless You With Peace.
Amen
Crazygirl95ful 7 months ago
@Crazygirl95ful Thank you. What a sweet person you are for your kind words. May God bless you for comforting those who need comfort in times of extreme stress and confusion.....
kgaccount 6 months ago
@MrPhillipsamuel1992 because he has tantrums
bunnyz324 8 months ago
It's very good and effective that his hands are held behind him to restraint. The 2:1 helps
TypesEvilAspieEyes 9 months ago
My son has meltdowns like this but he's assaultive not SIB. No amount of redirection or soothing will urge him out of it and all I can do is walk away and close his door and let him calm himself. You can't leave Jamey alone because of SIB. Retraining my son during meltdown makes them worse and restraint is the only way I'd be able to be near him with his thrashing. I don't live your life, but I can imagine. My heart breaks for my son when he has a meltdown because I can't help all the time.
TheRealVenna 11 months ago
Aren't there any current or even retired HIGHLY-QUALIFIED nurses in your area who could get together and provide services to people like Jamey (the most in need and at risk of injury) pro bono or at a reduced rate? Is anyone at your church or in your community able to do this and/or provide respite? I wish I could help your family somehow, is there anything we can do as viewers?
julie575 1 year ago 2
@julie575 I think more people in our Congress need to see videos like this. The don't know cases like this exist. The more they know, the better they will understand how it makes both economic and humanitarian sense to provide proper home care supports to extreme cases like this. And how funding should be based on a triage system.
kgaccount 1 year ago
Yes! Even if legislators don't CARE about the home being the LRE and don't respect the basic "human right" (for lack of a better term?) of the severely disabled individual being in an environment surrounded by loving family you would think they could figure out the financial equation! If a stable family is emotionally able (like yours) to treat the loved one with supports why on earth would they want to institutionalize them? Also, the caregiver in this video (a nurse?) is extraordinary!
julie575 1 year ago
WHAT DO YOU DO WHEN U CANT GET ANY HELP! IT'S JUST ME?
MrBigbosslady 1 year ago
@MrBigbosslady You fight to get the help you need. And in the interim, stay strong and press on.
kgaccount 1 year ago
@kgaccount Thank you, after seeing a lot of your videos i have gotten a "second wind" Im trying. Please keep your videos coming, Right now i feel your videos are the help for me right now. Thank You
MrBigbosslady 1 year ago
How terrible watching him cry =/
FTWinnable 1 year ago
@MrPhillipsamuel1992 He was 'frustrated." His severe autism limits his abilities to communicate what is going on. No doubt his mind is under attack and it prohibits him from telling us what exactly is going on. That's why it's important for him to be observed and cared for by a "team" of nurses, us, and others who "understand" what his unique and individual needs are. It's just too hard for outsiders to come in, do a drive by analysis and give suggestions. They don't get it,, until we show them.
kgaccount 1 year ago
Hi Jamey its me ( your friend Anna from Missouri ) i just wanted to say im continuing to pray for you and i. i also wanted to say thank god that you & your family were able to have 2:1 care that day . but jamey i would suggest not to bite cars , that will hurt your teeth . hang in there bro , im here for you and your family .
crazyboafrog1986 1 year ago
This video made me cry,his cry is heart breaking.My son has full seizures where he is not breathing for 10 minutes (diastat used)he also does alot of the bouncing just like Jamey. Jamey really needs 2:1 and the best nurses.Well THANKS for keeping us updated your videos inspire me.GOD BLESS
Karenatx4 1 year ago
Thats strange Jamie seems to want to put his anger on the cars arround, I do'nt know if his brother may drive cars but it meight be that he is frustrated that he can not drive them, might be a stupid idea from me but that is what it looks like.
If that is the case he is picking up alot more than Jamie shows.
happymark1805 1 year ago
@happymark1805 Yes, a behavioral specialist told me sometimes when autistic adults begin to "make progress", or they are "learning more" or "coming out of shell" their behavior actually gets "WORSE" since they are now seeing a world around them as terribly confusing and foreign. I don't know if that's case, but it's possible. Jamey LOVES to be driven around in car and go places, but we have to have 2:1 in these situations and we still don't have 1:1 support.
kgaccount 1 year ago
will the new CNA? be with you permanently? He seems like such a wonderful fit. He also ACTUALLY CARES about Jamey unlike the other CNA. Witch of the dogs is the one who seems to respond to Jamey? Was it one of the one following him?
ASDogGeek 1 year ago
@ASDogGeek There is massive shortage of qualified cna's for Jamey, so found this young man as emergency back up when other 2 unqualified cnas failed. And agencies had NO back up cnas. He's a medical assistant. Yet, he's better than the cnas! Just shows how matching Jamey with right person helps. But, it is critical we have majority LVN because cna and Ma's can't give meds. I can't use state voucher for people who aren't cna's so we pay outta pocket, again!@ I'm working on new team of nurses
kgaccount 1 year ago
@kgaccount. I guess the reality is I have to personally tscreen and train each nurse who comes out and then monitor to ensure they can handle Jamey. The state can't train them. The state can't monitor them. The state can't handle Jamey. All I need is state to provide nursing coverage and I'll do the rest of their job, which is behavioral/medical and case managment things I've been doing for years anyway. Oh, Jamey has a wonderful state case worker. She's what a social worker should be: caring.
kgaccount 1 year ago
@kgaccount As a social worker, I'm glad to hear that you are getting support at least in that area. I would love to hear more about your positive and negative experiences with social workers.
julie575 1 year ago
I'm just glad that Jamey is ok. That day was something. Jamey is a great kid and has great parents to watch an care for him. I'm glad you and husband were out there to help and I appreciate it.
duffalex24 1 year ago
@tommyw8576 I'm sorry to hear how U were treated. Your mom obviously had challenges. She probably loved you more than U will know, but was under seige in her own mind. YES, SSRI can be helpful. We still give Jamey 5-Htp, which does help, but as I've always said, IF he gets even the slightest cold, abrasion, etc..that causes him discomfort, NO drug will stop the sib.
kgaccount 1 year ago
Self Injury Behavior can also happen with us "High-Functioning" Autistics with Asperger's Syndrome. I am on an SSRI Type Antidepressant, Lexapro which has helped, yet, as an Adult, I have myself had issues with self-abuse hitting. I was raised by a parent, my Mom, who was for decades uncontrollably psychotic. Her way of "dealing" with me & my "milder" Autistic behaviors/cognition, was @ times "violent" psychotic beatings of me, to "make me "behave correctly".
tommyw8576 1 year ago
thank God those 2 guys were with him, and not some idiot that just wants his check :) That male CNA (?) in this video must be a God-send.
aspie1966 1 year ago
@aspie1966 He's got a really sweet heart and has military background, which is usually helpful.
kgaccount 1 year ago
@aspie1966 One guy is my fabulous husband, who was trying to "relax" in the house, when he heard me say, 'IS HE TRYING TO BITE THE CAR?" The other is a major blessing and who came into our lives in the nick of time to provide emergency relief and support. He is a really smart, capable young man who has just amazed us with his ability to learn how to help with Jamey.
kgaccount 1 year ago
seeing him cry breaks my heart...he is soo precious and you and your family are simply amazing. i know how it is because my family and I go thru the same exact things with my brother who is severly autistic. No one will truly understand how it affects your life in everyway until you go thru it first hand.
crystalmichellez 1 year ago
@crystalmichellez You sound like UR an amazing sibling. U will be something and someone powerful and with great purpose because of all this suffering. It teaches you things that you can't learn outside this kind of hell.
kgaccount 1 year ago
@kgaccount And it's NOT really the autism that is hellish. It's dealing with apathy and ignorance of others that makes it so painful. These top officials see what your family and other families go through, they have the power to help, and they choose to do nothing. Or the bare minimum.
kgaccount 1 year ago