Parents of Autistic Children Connect

[vitondaysi]

Ah i just read the comments below abot the pressure and the massaging. Keep at it your doing great

[vitondaysi]

I it possible that Jaime is seeking restraint? It does offer deep pressure which he may enjoy? Does He respond well to massaging ?

[charlietuna34]

You should put him down.

[blackredonyx]

Hi kgaccount, my twin she has the same problem, i think our mom had a vid up for a while of it but, we think it might be because her body doesnt de-toxify certain chemichals correctly. She isnt allergic to any meds that she takes either.

[sunnylilme]

We have an autistic boy. I've watched some of your videos, I wanted to let you know that I think you are an amazingly excellent mother. You really are.

[ASDogGeek]

Could nightmares be playing a role? Growing up I mad night terror s and now nightmares that can be pretty severe. I might try avoiding milk before bed.it could be a mix of nightmares and siezures?

[panther2598]

I'm autistic. One thing that helps me not do things like this is strong pressure, or heavy things. I some times like to lay under heavy objects. But my self injurous behavior is different. You hit yourself while I poke sharp things into my body, like sewing needles, cactus spines or nails.

[adrishelton]

oh god, he has the sweetest smile in the world... blessings, you are a great mother

[Laerke2007]

The children, I work with (also severe autism), sleep with a blanket with plastic balls in it .. so that they are stimulated throughout their sleep .. this seems to be helping their sleep and minimize SIB !

I wish you the best of luck

Regards,

Lærke

[kgaccount]

@Laerke2007 Thank U for suggestion, we have been using weighted blanket that we bought from special education catalog, used primary for autistic kids. He seems to really love the pressure. I will look for blanket with the plastic balls, that's a great idea, but he may not like if they aren't heavy enough. Will give it try. we've also recently put an air foam mattress on top of his mattress and that seems to be something, at least this week, that he loves.

[Laerke2007]

@kgaccount @kgaccount Thank you for replying I am glad to hear that you find some things that seem to be working even just for a little while ! And maybe this will too .. I found this web site showing these blankets/sheets, however I am not allowed to post the link here .. Still, the technical Information are as follows: (adults) Lenght 200 cm breadth 140 cm Weight 7000 g size of balls (50 mm) If available in Denmark, also in the Us !!! Good luck Lærke

[didileo]

@kgaccount I believe that the blanket with the plastic balls is this one is made by a company called Protac. I currently work with a young severely autistic girl with the same self-harm behavior as your son. I know how difficult this must be for you and I must say that you are one couragous mom!

[HPhoneyallday]

my son has just started waking up and hitting..he has share a room with his older brother since he was two..but now he wakes up and hits him..I thought he was angry because he woke up..the chew necklace idea I like!! my sons likes dangerous things to chew on..he'd love it!! I really do thank you again..you have just given me a shit load of information..that no one has told me!!thank you

[kgaccount]

@HPhoneyallday Oh, I'm so glad. I hope the chew necklace helps your son! As for the hitting at night...will he understand a re-direction? My son would not, but perhaps something for your son like giving him a special toy to "protect" when he awakens may re-focus his acute anxeity when he first awakens. Of course all depends on his cognitive ablitiy to understand this...

[HPhoneyallday]

@kgaccount Yes redirection I can attempt but protection no he doesn't understand concepts like that yet..truthful nothing has worked..massages, the tv, singing, trying to hold and cuddle him..he usually responds to..he is upset at night..and just tires himself out to sleep.Oh where can I get a chew necklace? my son can follow direction very well..sit down and things like that..if I tell him to get a seat on the bus when it comes he will..

[lovlybrwneyedlyn]

After seein the other video's of your son... seeing this one brings a joy to me... he looks sooo happy. This video put a smile and a tear in my eye.. god bless, he is so precious.

[mistifers]

My son goes in spurts. He'll have a month or so where he constantly wakes up all night long. Sometimes he's laughing. Sometimes he's inconsolable, kicking, screaming, flailing about. It's kind of a mixed bag- never know what it's going to be. But then his sleep patterns will suddenly improve for a while, and after a while he'll have another rough patch. It's soooo puzzling. BTW, we use Chewy Tubes, and they're a godsend!

[creeve100]

I am thank you for not put him in a home. If he say one word he say I love you mum

[sabbath66]

hang in there hun

[sparvogamarie]

Hi KG, I have Aspergers Syndrome and I'm not sure if this helps but I get headaches behind my eyes that feel like my eyes are going to explode, and I want to hit my head just like Jamey. I don't have seizures like he does but wonder if his eyes hurt too?

[kgaccount]

Hi sparvogarmarie,

That's good insight. I've had his eyes checked and doc says they are good. But as for him having pain behind eyes, from let's say a stress headache, it's possible. I have given him advil at night to test if this would help if there is some kind of pain, and sometimes it does help, but it's hard to say if it was the advil, or just was a night he didn't hit. AAAHHH it's so maddening..I wish he could tell us. Take caer and thanks for your insight. I really appreciate it.

[suekosa]

I think that whatever your son is doing is linked to his epilepsy and not his autism. It definitely sounds like there is neurological involvement because he wakes up at almos the same time and does the same thing to himself. But also what leads me to believe it's epilepsy is that it disturbs his sleep cycle.

[kgaccount]

Yes, I agree, the nocturnal self abuse does seem rooted in seizure activity startling him...however it can't be the only reason for head punching, because if it's daytime, and we're walking down street, and he's fine, and then, suddenly a car alarm goes off, he drops to the floor and smashes his fists into his head: that's behavioral rooted in sensory assault. I think this is why my son's case is so complex. He punches himself for both behavioral and medical related issues

[LettyVLO1]

HELLO. My name is Letty and my son suffers from severe autism. He will be 18 in Feb. Stephen also suffers from seizures. First seizure was in Aug , 2007. I have noticed since Stephen never has a good sleep, he jerks alot and he does wake up very alert & very hyper. This can happen for 2x's a week.

Please tell me more about your beautiful Son =)

[djderk]

i am curious if medical marijuana or the "marinol" pill have any effect on him.

good luck

[sandra44035]

My sister and I have some information for you. We both have autistic boys. Runs in the family. My son had the 'night screams' from about 2-4. Docs had no idea what to do. In fact the best doc we had said, and I quote, "I have no idea what to advise you. He is the only autistic child in my practice." At least he was honest. You are right on the REM sleep. REM happens in loops, from lightest to deepest, and back, longer each time. That is why apena occurs in the early morning mostly in kids.

[kgaccount]

Interesting that you say it runs in family, as so many think vaccines cause autism. Do you think autism was "triggered" by vaccines"? Or perhaps exacerbated by vaccines? I'm not sure in my son's case, but he definately had a reaction to 2nd dose at 6 months old.

[sandra44035]

If you are considering the themorisol theory, there is some backing to it. You can have his mecury levels checked. Our doctor's office ran a screen, but blacked out the mercury levels. I had to take him to a Candian Children's hospital. First: I believe each and every one of us has the chrom for autism. I believe it is close to the same chrom that causes scitzophenia in 20-24 year olds. My son's SIB is in fustration and had been related to his sleep patterns. Eric sleeps in a hamock.

[Diver86]

I think you are an amazing parent. I was a behavioral therapist in MA and worked with kids in a residential facility who exhibited the highest levels of SIB and aggressive behavior. I know how tough it must be on you, but he benefits so much from being able to live with you full-time. I am so inspired by you and am now in medical school to help the fight against autism. God bless.

[kgaccount]

Thanks for your encouraging words. I'm forever frustrated helping my son. It seems there is an endless fight, a chase to find the neurochemical or neurobiological, nutritional, etc..comfort zone for behaviorally fragile autistics like my son...I'm glad you're in med. school. We need more doctors who have a heart for autism....I'm sure you will be a blessing to the autism community.

[kgaccount]

Yes, we had him risperdal. Sadly, it did help a bit with SIB, but it increased seizures, which then increased SIB....More and more we find we must keep him at a constant level of homeostasis (which we aren't sure exactly what that is for him yet) so he's comfortable and stable. We try and read his moods....we also do medical monitoring 24/7....ie...notice changes in gait, posture, increased vocalizations, bowels, urinary output, etc....

[sandra44035]

We deal with SIB, and the positive redirection works well with my nephew (7), but not for my son (16). It is in the REM for our boys, or fustration over something. As to the fustration, you're on cue with the restraining, as for the REM, I am sending you a message to your inbox. Too long for here. Sandra (Eric's Mom) In Ohio

[Lori10677]

I am not sure what Med's he is on but my son was very self injurous, not so much at night but during thay huge fits until I put him on Risperdal, have you ever tried that one? I live in CA and I have 3 boys with low funtioning Autism two are nonverbal and self injurous. Good luck believe me I know how hard it is to see your son do it and feel helpless to help him

[glotochon]

Hi, I also have three kids, my six year old has ADHD and PDD my three year old is Autistic and my 15 month old baby is looking good so far but I was told that he may be at risk. I just wonder how you do it with your three sons... There are days where I just can't take it !

[kgaccount]

Anytime you have seizure meds, you will have liver issues, but my son is now off depakote, due to long term use causing sudden hyperammonia...he's now on lamictal.....it seems better, as for seizure control, but I dont understand why he;s waking up beating himself......I want him to be the most comfortable and happy he can be.....diet and checking for things like parasites is important...I have had him checked for parasites..it was negative...also, liver is normal. He's behaviorally fragile...

[Sassifrassilassi]

Night wakings can also be liver issues. These are just things I treat my daughter for and she has made good progress. I know not many believe in this approach though.

[Sassifrassilassi]

This might sound weird, but parasites and bacteria can cause aggression. If he has bad bacteria in the bowels this can cause aggresion. Parasites will cause a lot of bad behaviours as well.

Things like Paragone or Wormwood work well for parasites. Probiotics and natural antibacterials like Olive Leaf Extract work very well for bacteria. Olive Leaf should be given for a long period of time though.

[kgaccount]

Nothing sounds weird at this point! (ha ha) We have had him tested for parasites. Test negative. We do give our son garlic daily to enhance immunity and to ward off parasitic exposures....given he tries to eat things off the floor, etc.....Thanks for idea....Olive leaf is a good suggestion! I heard black walnut is also good to rid body of parasites...funny thing is we just tried homepathic "restless legs" and for 3 nights, he hasn't had much SIB...we'll see...

[Autismmom614]

Has he been tested for Sleep Apnea?

[kgaccount]

No, though the doctor said he had a slightly deviated septum. Doctors always fight me when I want surgery or medical interventions that require going under general anesthesia due to the risks involved with my son. It's acutally better to do local, as the breathing tube during general anesthesia leaves his throat sore and exacerbates self injurious behaviors. I will ask docs to check for sleep apena....we'll see what they say. It will probably be a fight. As usual.