@jennalah Google theraband tubing and it will direct you to site...get the highest level, I believe it's a 5, so it's harder to break while chewing...best of luck!
My heart goes out to you! Have you tried contacting the Kennedy Krieger Institute in Baltimore which specializes in helping children with autism/developmental disabilities and severe problem behavior?
my son has autism, hes 16 he can walk and talk do things himself, but finds it hard to socilasie and make freinds, and he cant cope in new situations or new places, it makes him cry, he can talk to people but finds it very hard. he speaks in a odd tone of voice. he can make it to the toilet on occasion but mainly when he wets and soils himself he remains obliviouse to it and doesent seem to notice or care. so we have to diaper him, sometimes he wont respond to his name, wat spectrum is he on?
I know exactly what your going through. I have a 21yr old who has severe self injury. Doctors won't help because they cant fix it. Somebody got to start somewhere. Ive written to doctor shows on tv. No response trio to ucla no help there either. I am a single mom and go through what your you are just me and my son. It truly is a secluded and lonely world we live in because no one understands unless they cant live it. No answers no help nothing just you and your child trying to cope.
Hi kgaccount, I've been diagnosed with Asperger Syndrome.
I dunno if you've known this, but there's evidence that deep pressure can help reduce anxiety and tension in many people on the Autism Spectrum. Temple Grandin actually has a paper published regarding the efficacy of the deep pressure effects of her "squeeze machine". Have you considered getting him a weighted blanket or "tight fitting" clothing?
@Amajanshi Hi, yes, deep pressure helps during mild to moderate SIB episodes, but isn't as effective during extreme SIB, if it's rooted in, let's say, pain, of any kind. But YES, absolutely, Temple Grandin showed the world how important it is for some ASD persons to have deep pressure, it's calming.
I once discussed SIB like this with a very good child psychiatrist and specialist on autism here in Norway, and she wondered if this kind of SIB might be almost like tics - and maybe treatable with medicine for Tourettes... What is your thoughts on that?
@mamalusk This kind of SIB is deeply rooted in severe autism disorder, which involves more severe neurochemical dysfunction than the higher functioning autistics, so it's more challenging to find drug therapies to target which areas of brain are fueling the SIB, since it's most likely multiple areas, then add to that, external factors like loud noises or him getting a blister, that will trigger SIB. Complex. As for medicine for Tourettes, depends what neotransmitters or receptors involved .
@chanchansashyhoe I stopped going years ago. It wasn't very helpful. Most the moms had high functioning kids, and the ones who were lower functioning ended up being placed, so those parents never returned. I couldn't find anyone else to relate to after that.
hi ive got mild learning dissilibilies and ptsd and fasd and by poler disorder and i live in my own little wourld because peaple tease me and see me as different i take meds to and they help at times but i get really sad at times and really happy other times and its cunfusing at times i abuse myself to at times i used to have behavior problems but now i take meds for that ive got a few friends but its very hard for me to make friends cause i wont just go up to peaple and talk.well i say bye
@TheSpike114 I'm not sure how old you are (not asking) but I have 2 learning disabilities and I'm almost 30 now and it becomes easier as you get older because you learn what works for you. If meds help stay on them and don't let people get you down. Sometimes if you tell people about what is going on with you they are very understanding when they know and others could still be standoffish; but just keep going :)
Have you considered contacting autistic individuals about these behaviors and what helps them? There are even some autistic people who are parents of autistic children.
Different autistics have different triggers and sensitivities, but all of these behaviors exist as coping mechanisms (or they wouldn't be there). It might help just if you could figure out a greater number of triggers, not that they can all be avoided (car alarms are a good example).
I heard people with Aspergers and Autism have a thing where they can't feel pain like people do. It is like me with burns. I got a second degree burn that was hurting for 1 minute. I also had a pipe thing in a bonfire that must have been well over 1000 degrees. I stepped on the pipe and I yelped. Stopped hurting 4 minutes. I have Aspergers and I must say it can be good because I can remember actors and actresses and what movies they all were in.
@DarthBarkerSithLord And how would you even measure that, since "people" (apparently autistics aren't people) and autistic people can't exactly objectively compare a subjective experience? Burns sometimes don't hurt much because they kill the pain receptors on creation--plenty of other wounds are like this.
I don't know whether or not you actually have Asperger's, but please, don't spread around harmful ideas when you have no idea what you're talking about.
At what point or at what age did you accept the fact that your son would be non-verbal? When did being a "verbal communicator" became unrealistic? I only ask because I work with children with AU and that's always in the back of my mind....is this child ever going to talk or is he/she going to be a non-verbal communicator.
@SepherStar . Yes, this is ONE of about 50 reasons why he hits himself. Self abuse is triggerred by medical and environmental things. Example, we were walking thru parking lot. A car alarm went off. He dropped to ground and started slamming his fists into head. The noise scared him.
@kgaccount Another example is he's had sinusitis past two weeks. That triggered HORRIBLE bouts of savage, brutal self-injury that lasted almost all day. We had to give him emergency meds (ativan) to try and calm him until the pain and discomfort of sinusitis decreased. NOT easy. Nightmare. But we made it through! He's doing awesome after anti-biotics finally killed the infection! Yea!
OH God I so relate to this. Our kids are so different (HFA) yet so similiar in SIB and we too have trolled the experts and have Zippo to show for it. I have begged for ppl to come in to my home and see what is really happening. Would love to hear what you HAVE got working. My son also attacks his sister which just complicates things again. Is there any way we can get in contact?
Self injury can happen across the spectrum, no doubt, so it's important if your son speaks to get him to communicate what is wrong, if possible....that's one advantage you may have in your situation...also, take him to doc and have anything that could be causing pain or discomfort ruled out...feel free to leave me messages on my account if you need more help
By watching your videos, you can really tell that Jamie is a regular guy trapped inside the world of autism. It's like you can see it in his eyes that he's in there, just trapped.
I have an autistic child and your videos break my heart! Not because of Jamey...because of you! Where are the pressure techniques?...where are the spin techniques? Who the hell are your doctors? Advisors? BIs? He is not getting what he needs and the reaction to his behaviours is making it worse. At his age a strategy for care should have been in place for some time. Looking for a reality show? All these videos show incompetance and slim tolerance.
Many people don't realise the system serving autistic persons with challenging behaviors can be a scam. Everything is written on paper, but rarely are the school personnel or "specialists" paid to implement the strategies doing much. This has led, over the years, to inconsistent application of behavioral interventions, which you can see, have not helped my son. We do a lot at home, but if it's not applied across settings, than it compromises his learning....very frustrating..constant problem
Where do you live? Are there not group homes that specialize in severe autistic adults? My sister works in one and the residents have the best of care, access to health care, professionals, etc. They go on outings with their individual quirks in mind...one won't step foot on concrete so they carry thin mats for him to step on. Where is the support? Consistency is a must! You cannot do it alone. Maybe consider moving somewhere that gives you that support.
Spin? He has a seizure disorder. As for doctors, not one in 18 years (he was diagnosed autistic at 13 months) as ever known really what to do with him outside most of my own research and ideas. He's a complex case. Most people give up on him because he takes so much work, but it's sad, because he has so much potential...even if it's slow progression...there is so much more to him....he can learn more. He's smart. He's trapped in his own world...I keep trying new things...I can't do it all alone
Zaboo I cannot believe our inconsiderate you are. To say this to a parent? Reality Show? Are you kidding me?
I too have a severely autistic child. Diagnosed at 3, and now has seizures. I have gone above and beyond with my son and there is little progress. Doctors, therapist, diets, sensory tools.
Your just horrible for saying those awful things!!
****APPLAUSE APPLAUSE I completely agree with you. Every word out of your mouth I completely relate. OMG how I feel so alone at times and wonder are we the only ones living like this?
I had parents of autistic kids (moderate to high functioning) trying to give me advice "Have you tried?" "You need to do this..."
I am going to get my camera out to show my son too. People need to be aware of this side of the spectrum too.
People that don't live with this type of autism and behavioral challenge don't understand there are multiple antecedents to the behavior, which fluctuate daily....despite even the best pro active interventions....that is the mystery..its seems there are some who are convinced there is always something that will work everytime, or something you've missed doing, because they don't witness this. It's more complex than people realise because they are used to the mild to moderate cases.
Wow! You are doing an AMAZING job with him. And yeah the fact that you have no support is unacceptable! I have higher functioning autism but still have SIB that looks a lot like that. My aides used to just restrain me because the techniques never worked. There was nothing anyone could do to stop me that's for sure! Greatfully, I am able to type so having that helped me. I can't imagine how hard it would be with no functional language. Where are the support services???? This is unacceptable.
Where could I find one of those blue tubes?
jennalah 4 months ago
@jennalah Google theraband tubing and it will direct you to site...get the highest level, I believe it's a 5, so it's harder to break while chewing...best of luck!
kgaccount 3 months ago
My heart goes out to you! Have you tried contacting the Kennedy Krieger Institute in Baltimore which specializes in helping children with autism/developmental disabilities and severe problem behavior?
tlovullo 5 months ago
my son has autism, hes 16 he can walk and talk do things himself, but finds it hard to socilasie and make freinds, and he cant cope in new situations or new places, it makes him cry, he can talk to people but finds it very hard. he speaks in a odd tone of voice. he can make it to the toilet on occasion but mainly when he wets and soils himself he remains obliviouse to it and doesent seem to notice or care. so we have to diaper him, sometimes he wont respond to his name, wat spectrum is he on?
quaker261 5 months ago
You are an amazing woman and I hope you remember that EVERY day.
5scudder 6 months ago
I know exactly what your going through. I have a 21yr old who has severe self injury. Doctors won't help because they cant fix it. Somebody got to start somewhere. Ive written to doctor shows on tv. No response trio to ucla no help there either. I am a single mom and go through what your you are just me and my son. It truly is a secluded and lonely world we live in because no one understands unless they cant live it. No answers no help nothing just you and your child trying to cope.
magroots21 6 months ago
How come he doesnt like loud noises?
Shoes454 7 months ago
Just strap a large pillow or plushy to the side of his face so he punches it instead. Then when he goes to sleep, he's already in position anyways.
varnlestoff 7 months ago
It's as if the SIB is tourettes, he hates it but can't help it. I have tourettes and if I hear one more person say I can control it................
Aluapay 10 months ago
This is trebbly sad I hope and god could help him and problems
kletcho96 1 year ago
Hi kgaccount, I've been diagnosed with Asperger Syndrome.
I dunno if you've known this, but there's evidence that deep pressure can help reduce anxiety and tension in many people on the Autism Spectrum. Temple Grandin actually has a paper published regarding the efficacy of the deep pressure effects of her "squeeze machine". Have you considered getting him a weighted blanket or "tight fitting" clothing?
I wish you the best in looking after your son.
Amajanshi 1 year ago
@Amajanshi Hi, yes, deep pressure helps during mild to moderate SIB episodes, but isn't as effective during extreme SIB, if it's rooted in, let's say, pain, of any kind. But YES, absolutely, Temple Grandin showed the world how important it is for some ASD persons to have deep pressure, it's calming.
kgaccount 1 year ago
I once discussed SIB like this with a very good child psychiatrist and specialist on autism here in Norway, and she wondered if this kind of SIB might be almost like tics - and maybe treatable with medicine for Tourettes... What is your thoughts on that?
mamalusk 1 year ago
@mamalusk This kind of SIB is deeply rooted in severe autism disorder, which involves more severe neurochemical dysfunction than the higher functioning autistics, so it's more challenging to find drug therapies to target which areas of brain are fueling the SIB, since it's most likely multiple areas, then add to that, external factors like loud noises or him getting a blister, that will trigger SIB. Complex. As for medicine for Tourettes, depends what neotransmitters or receptors involved .
kgaccount 1 year ago
Are there any support groups in your area for children with autism?
Thanks for the video.
chanchansashyhoe 1 year ago
@chanchansashyhoe I stopped going years ago. It wasn't very helpful. Most the moms had high functioning kids, and the ones who were lower functioning ended up being placed, so those parents never returned. I couldn't find anyone else to relate to after that.
kgaccount 1 year ago
hi ive got mild learning dissilibilies and ptsd and fasd and by poler disorder and i live in my own little wourld because peaple tease me and see me as different i take meds to and they help at times but i get really sad at times and really happy other times and its cunfusing at times i abuse myself to at times i used to have behavior problems but now i take meds for that ive got a few friends but its very hard for me to make friends cause i wont just go up to peaple and talk.well i say bye
TheSpike114 1 year ago
@TheSpike114 I'm not sure how old you are (not asking) but I have 2 learning disabilities and I'm almost 30 now and it becomes easier as you get older because you learn what works for you. If meds help stay on them and don't let people get you down. Sometimes if you tell people about what is going on with you they are very understanding when they know and others could still be standoffish; but just keep going :)
cbudzyn 1 year ago
Have you considered contacting autistic individuals about these behaviors and what helps them? There are even some autistic people who are parents of autistic children.
Different autistics have different triggers and sensitivities, but all of these behaviors exist as coping mechanisms (or they wouldn't be there). It might help just if you could figure out a greater number of triggers, not that they can all be avoided (car alarms are a good example).
Dreamchain17 1 year ago
I heard people with Aspergers and Autism have a thing where they can't feel pain like people do. It is like me with burns. I got a second degree burn that was hurting for 1 minute. I also had a pipe thing in a bonfire that must have been well over 1000 degrees. I stepped on the pipe and I yelped. Stopped hurting 4 minutes. I have Aspergers and I must say it can be good because I can remember actors and actresses and what movies they all were in.
DarthBarkerSithLord 1 year ago
@DarthBarkerSithLord And how would you even measure that, since "people" (apparently autistics aren't people) and autistic people can't exactly objectively compare a subjective experience? Burns sometimes don't hurt much because they kill the pain receptors on creation--plenty of other wounds are like this.
I don't know whether or not you actually have Asperger's, but please, don't spread around harmful ideas when you have no idea what you're talking about.
Dreamchain17 1 year ago
At what point or at what age did you accept the fact that your son would be non-verbal? When did being a "verbal communicator" became unrealistic? I only ask because I work with children with AU and that's always in the back of my mind....is this child ever going to talk or is he/she going to be a non-verbal communicator.
mrsfbinc 1 year ago
What do you do at night
kp996 1 year ago
Since he has epilepsy as well, I wonder if he is hitting himself as a reaction to auras sometimes.
SepherStar 1 year ago
@SepherStar . Yes, this is ONE of about 50 reasons why he hits himself. Self abuse is triggerred by medical and environmental things. Example, we were walking thru parking lot. A car alarm went off. He dropped to ground and started slamming his fists into head. The noise scared him.
kgaccount 1 year ago
@kgaccount Another example is he's had sinusitis past two weeks. That triggered HORRIBLE bouts of savage, brutal self-injury that lasted almost all day. We had to give him emergency meds (ativan) to try and calm him until the pain and discomfort of sinusitis decreased. NOT easy. Nightmare. But we made it through! He's doing awesome after anti-biotics finally killed the infection! Yea!
kgaccount 1 year ago
OH God I so relate to this. Our kids are so different (HFA) yet so similiar in SIB and we too have trolled the experts and have Zippo to show for it. I have begged for ppl to come in to my home and see what is really happening. Would love to hear what you HAVE got working. My son also attacks his sister which just complicates things again. Is there any way we can get in contact?
AutismStudy 2 years ago
Self injury can happen across the spectrum, no doubt, so it's important if your son speaks to get him to communicate what is wrong, if possible....that's one advantage you may have in your situation...also, take him to doc and have anything that could be causing pain or discomfort ruled out...feel free to leave me messages on my account if you need more help
kgaccount 2 years ago
By watching your videos, you can really tell that Jamie is a regular guy trapped inside the world of autism. It's like you can see it in his eyes that he's in there, just trapped.
TheAutumBlog 2 years ago 5
God bless you and thank you for continuing to show the world that autism is not all special talents and genius IQ's!
mikeymou 2 years ago 4
I have an autistic child and your videos break my heart! Not because of Jamey...because of you! Where are the pressure techniques?...where are the spin techniques? Who the hell are your doctors? Advisors? BIs? He is not getting what he needs and the reaction to his behaviours is making it worse. At his age a strategy for care should have been in place for some time. Looking for a reality show? All these videos show incompetance and slim tolerance.
Zaboo526 2 years ago
Many people don't realise the system serving autistic persons with challenging behaviors can be a scam. Everything is written on paper, but rarely are the school personnel or "specialists" paid to implement the strategies doing much. This has led, over the years, to inconsistent application of behavioral interventions, which you can see, have not helped my son. We do a lot at home, but if it's not applied across settings, than it compromises his learning....very frustrating..constant problem
kgaccount 2 years ago
Where do you live? Are there not group homes that specialize in severe autistic adults? My sister works in one and the residents have the best of care, access to health care, professionals, etc. They go on outings with their individual quirks in mind...one won't step foot on concrete so they carry thin mats for him to step on. Where is the support? Consistency is a must! You cannot do it alone. Maybe consider moving somewhere that gives you that support.
Zaboo526 2 years ago
Girl, now why haven't we thought of that? Consistency, Now there is an idea.
LettyVLO1 2 years ago 2
Spin? He has a seizure disorder. As for doctors, not one in 18 years (he was diagnosed autistic at 13 months) as ever known really what to do with him outside most of my own research and ideas. He's a complex case. Most people give up on him because he takes so much work, but it's sad, because he has so much potential...even if it's slow progression...there is so much more to him....he can learn more. He's smart. He's trapped in his own world...I keep trying new things...I can't do it all alone
kgaccount 2 years ago
Zaboo I cannot believe our inconsiderate you are. To say this to a parent? Reality Show? Are you kidding me?
I too have a severely autistic child. Diagnosed at 3, and now has seizures. I have gone above and beyond with my son and there is little progress. Doctors, therapist, diets, sensory tools.
Your just horrible for saying those awful things!!
LettyVLO1 2 years ago
****APPLAUSE APPLAUSE I completely agree with you. Every word out of your mouth I completely relate. OMG how I feel so alone at times and wonder are we the only ones living like this?
I had parents of autistic kids (moderate to high functioning) trying to give me advice "Have you tried?" "You need to do this..."
I am going to get my camera out to show my son too. People need to be aware of this side of the spectrum too.
LettyVLO1 2 years ago
Letty,
People that don't live with this type of autism and behavioral challenge don't understand there are multiple antecedents to the behavior, which fluctuate daily....despite even the best pro active interventions....that is the mystery..its seems there are some who are convinced there is always something that will work everytime, or something you've missed doing, because they don't witness this. It's more complex than people realise because they are used to the mild to moderate cases.
kgaccount 2 years ago
Wow! You are doing an AMAZING job with him. And yeah the fact that you have no support is unacceptable! I have higher functioning autism but still have SIB that looks a lot like that. My aides used to just restrain me because the techniques never worked. There was nothing anyone could do to stop me that's for sure! Greatfully, I am able to type so having that helped me. I can't imagine how hard it would be with no functional language. Where are the support services???? This is unacceptable.
squirrel12356 2 years ago
We have better supports now after I fought for them, as usual, everything's a fight.
kgaccount 2 years ago