ildanr5k
07-12-2003, 07:10 PM
I will apologize first as I know this will be long. First of all I have 2 children from a previous marriage ages 6 and 9. My husband has 2 children from a previous marriage 7 and 8. We have a 10 month old together. We all live together. My seven year old stepson is severly autistic, nonverbal, and hyperactive. These are some, not all of the meds he has been on in the last year: clonidine, resperdol, remeron, paxil, zyprexa, trileptal, seroquel, revia, inderal, propanalol. Some of them were very bad, some worked for a couple of weeks. We always return to the same behaviors. Here is a list of some not all of the behaviors: he hits, pinches, scratches, and tries to bite, he has choked his 10 month old sister, he has shoved her to the ground for touching him, he has urinated and defacated in his floor and mixed it together to make finger paint for his carpet and walls( he is potty trained ), he hits and scratches himself to the point of getting blood, he opened his window at 11:30 at night and proceded to empty his entire bedroom out the second story window including clothes, toys, sheets, blankets, pillows, heat vent, night light, he has also just climbed out on the roof(we have a lock now)he hurts the other children every time we get in the car, my step daughter has bruises and scratches all over her arms and legs, my baby has 2 from today, he has opened the car door while driving down the interstate, he rarely sleeps past 4a.m. when he wakes up he screams at the top of his lungs for about 2 hours, when we take him places he throws himself down on the floor and screams or knocks over displays. We have contacted a behavioral hospital which says they could help but our insurance will not pay for mental health for children. He also has Medicaid but the hospital doesn't take it. I don't know what to do, We are very desparate and no one will help us. We have tried everything from diets, meds, any therapies we could find ot, speach, aba, community services for mr/mh, even writing the congressman. I feel like we are sacrificing the other childrens childhoods and making no progress. All of the other children in the house are scared of him except for my 10 month old, who hasn't learned yet. It is taking it's toll on my marriage and my relationship with my children. Also my husband is active duty military which leaves me as the primary caretaker almost all the time. Does anyone have any advive????
Sponsor
rids
07-12-2003, 08:06 PM
Dr Mary Megson- Richmond, VA
She is our specialist, and we come from S GA to see her. Meanwhile, you need to keep him away from the other kids-or eventually DCFS will get called, and then you may have a completely different problem. The state must have a mental health unit somewhere that accepts children. Your insurance by law must pay for mental health for a diagnosed child with autism. I would contact a social worker at school, or one of those community services and see if they can help. Or your state advocacy office may be able to assist you. There is a limit as to how much the rest of your family can take.....I know that for some families, residential placement of their child with autism was the only answer.
She is our specialist, and we come from S GA to see her. Meanwhile, you need to keep him away from the other kids-or eventually DCFS will get called, and then you may have a completely different problem. The state must have a mental health unit somewhere that accepts children. Your insurance by law must pay for mental health for a diagnosed child with autism. I would contact a social worker at school, or one of those community services and see if they can help. Or your state advocacy office may be able to assist you. There is a limit as to how much the rest of your family can take.....I know that for some families, residential placement of their child with autism was the only answer.
cjksj
07-13-2003, 03:54 AM
Hello,
I have a 10 yr. old autistic son and 3 other children 8, 2 and 5 months. We have of some of the same behaviors occasionally. My son has a full time aide at school and we use the brushing technique, weighted blanket or vest and swinging for my son. These seem to be a calming therapy for him. I know my son does not like alot of people around him, so when I remarried it took time for him to adjust and then when the other children came along we are adjusting again. Also, you may type in autism in virginia to find some helpful resources in your area. I was able to find new things for me this way. Always remember you have to be a special person for God to give you such a special child and he would not give us more than we can handle. With me I refused all meds for my son, I felt they would do more harm than good. Maybe to many meds. at once could be a problem. You have to trust your doctor on that one I guess. I hope you find the help you need. Hang in there and Good luck.
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I have a 10 yr. old autistic son and 3 other children 8, 2 and 5 months. We have of some of the same behaviors occasionally. My son has a full time aide at school and we use the brushing technique, weighted blanket or vest and swinging for my son. These seem to be a calming therapy for him. I know my son does not like alot of people around him, so when I remarried it took time for him to adjust and then when the other children came along we are adjusting again. Also, you may type in autism in virginia to find some helpful resources in your area. I was able to find new things for me this way. Always remember you have to be a special person for God to give you such a special child and he would not give us more than we can handle. With me I refused all meds for my son, I felt they would do more harm than good. Maybe to many meds. at once could be a problem. You have to trust your doctor on that one I guess. I hope you find the help you need. Hang in there and Good luck.
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ildanr5k
07-13-2003, 12:06 PM
Thank you for responding. We have tried the brushing(didn't work), he hated the weighted vest, he does like to swing but only for a few minutes, we have a huge ball that is not all the way inflated that he bounces on. It seems to be a favorite.
As far as school goes he has regressed so much i don't even know where to begin. Last year he could say "put me down" "I want go home" "I want chips" "no" "mean" "water" and "pizza". Now he says chips and pizza. They have cut his speach because "he's not interested". All of the other children in his class are verbal. When he started eating nonfood items(barbies, marbles, books, puzzles) they placed him in the corner of the room with two bookcases to block him from getting out. A teacher had to physically move the bookcase for him to be able to leave. How is this teaching him? They call it his "module". It is his work and play area. It is about 3' x 3'. he has a blanket and about 5 toys they decided he wouldn't be able to chew up. He doesn't have his own aide. His iep goals went from learning to ask for things and separate colors, write his name to he will not scratch staff 80% of the time. It is ridiculous. If I were locked in a box all day I would probably act crazy when i got home too. We are all suffering. He only weighs 56lbs but he packs a punch. He refuses to bath, brush his teeth, go in the car, or have any contact with siblings. If I go to play with him in his room he has to be in a certain mood or he just pushes me out and closes the door. His last episode was he sat in the car and his sister looked at him. He then kicked her in the stomach, as she bent over in pain he grabbed her hair and yanked it, she put her hands up to grab her hair and he pinched and scratched her hand. He walks by the other children and they put their hands up to protect their faces. When he is hurting himself by slapping in the head as hard as he can scratching his skin off or banging his head we try to restrain him. His new thing for that is trying to bite your face. His last episode we took him to the er. It took four nurses to hold him down. He was scratching and piching them all, hurting himself, screaming. All they do is up his meds. I think he's had enough meds as he isn't even the same child anymore. He walks around drugged and still has his fits. It's escalating into a very dangerous situation. He has run out into a busy street several times to try to get away. There is no obvious reason for his fits so once it starts sometime it's all day up to 12 hours. What can we do?
As far as school goes he has regressed so much i don't even know where to begin. Last year he could say "put me down" "I want go home" "I want chips" "no" "mean" "water" and "pizza". Now he says chips and pizza. They have cut his speach because "he's not interested". All of the other children in his class are verbal. When he started eating nonfood items(barbies, marbles, books, puzzles) they placed him in the corner of the room with two bookcases to block him from getting out. A teacher had to physically move the bookcase for him to be able to leave. How is this teaching him? They call it his "module". It is his work and play area. It is about 3' x 3'. he has a blanket and about 5 toys they decided he wouldn't be able to chew up. He doesn't have his own aide. His iep goals went from learning to ask for things and separate colors, write his name to he will not scratch staff 80% of the time. It is ridiculous. If I were locked in a box all day I would probably act crazy when i got home too. We are all suffering. He only weighs 56lbs but he packs a punch. He refuses to bath, brush his teeth, go in the car, or have any contact with siblings. If I go to play with him in his room he has to be in a certain mood or he just pushes me out and closes the door. His last episode was he sat in the car and his sister looked at him. He then kicked her in the stomach, as she bent over in pain he grabbed her hair and yanked it, she put her hands up to grab her hair and he pinched and scratched her hand. He walks by the other children and they put their hands up to protect their faces. When he is hurting himself by slapping in the head as hard as he can scratching his skin off or banging his head we try to restrain him. His new thing for that is trying to bite your face. His last episode we took him to the er. It took four nurses to hold him down. He was scratching and piching them all, hurting himself, screaming. All they do is up his meds. I think he's had enough meds as he isn't even the same child anymore. He walks around drugged and still has his fits. It's escalating into a very dangerous situation. He has run out into a busy street several times to try to get away. There is no obvious reason for his fits so once it starts sometime it's all day up to 12 hours. What can we do?
Dylansmom27
07-13-2003, 09:37 PM
First off, kudos to you for hangin in there. Being part of a blended family is hard enough, but to have a child with disabilities is tough to take on as well. I commend you for looking for help. With that said, and maybe I overlooked something, but what do you have for support in the school area? How does he manage in school? What does his teacher, OT, Speech or other therapists say? Do they see these behaviors at school too?
Do you have a neurologist helping you? Maybe there is something more going on to make him act out so violently. I agree, you need to have support from a behavioralist. A GOOD ONE!!!
Those certainly are a lot of medications to be on (I am sure he is not on all of them at once). This must be taking a lot out of you and you must be a really special mom to be doing what you do. Take care.
Lynn
(mom to Dylan, 6 yrs old autistic. Devin 3 yrs old neuro-typical)
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Mom to Dylan ASD and Devin NT
Do you have a neurologist helping you? Maybe there is something more going on to make him act out so violently. I agree, you need to have support from a behavioralist. A GOOD ONE!!!
Those certainly are a lot of medications to be on (I am sure he is not on all of them at once). This must be taking a lot out of you and you must be a really special mom to be doing what you do. Take care.
Lynn
(mom to Dylan, 6 yrs old autistic. Devin 3 yrs old neuro-typical)
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Mom to Dylan ASD and Devin NT
firstdonoharm2
07-13-2003, 11:11 PM
Please listen to post by 'rids'. Dr. Mary Megson is a developmental pediatrician in Virginia who has excellent credentials for treating autistic children, and she truly cares for our children.
Next-- one of the best things a parent with an autistic child can do is read the newsletters of the Autism Research Institute, directed by Bernard Rimland. His research on high vitamin B6 and magnesium in the treatment of autistic children has helped so many in your shoes over the years. If I were you, I would seriously consider that approach as it is obvious the prescription meds are either not working or they are contributing to your stepson's aggression. Dr. Rimland has published several anecdotal stories of autistic individuals that had severe struggles with aggression and behaviorial problems who were helped immensely with the B6/magnesium protocol. He has lots of info at his website.
My heart is heavy for what you must be going through. I'll be praying for you.
Next-- one of the best things a parent with an autistic child can do is read the newsletters of the Autism Research Institute, directed by Bernard Rimland. His research on high vitamin B6 and magnesium in the treatment of autistic children has helped so many in your shoes over the years. If I were you, I would seriously consider that approach as it is obvious the prescription meds are either not working or they are contributing to your stepson's aggression. Dr. Rimland has published several anecdotal stories of autistic individuals that had severe struggles with aggression and behaviorial problems who were helped immensely with the B6/magnesium protocol. He has lots of info at his website.
My heart is heavy for what you must be going through. I'll be praying for you.
smartgirl80
07-14-2003, 02:59 AM
Hi,
I am a teacher and have worked at a school for severely Autistic children for 5 years. The school uses Applied Behavior Analysis and I have seen it do some amazing things, of course, it does not work for everyone. If you are at the end of your rope, you may be willing to try it. Contact Dr. Bobby Newman in NYC, he is the best in the world. Good luck and hang in there!
Melissa
I am a teacher and have worked at a school for severely Autistic children for 5 years. The school uses Applied Behavior Analysis and I have seen it do some amazing things, of course, it does not work for everyone. If you are at the end of your rope, you may be willing to try it. Contact Dr. Bobby Newman in NYC, he is the best in the world. Good luck and hang in there!
Melissa
saratire
07-18-2003, 03:13 PM
i WOULD CALL A REVIEW OF HIS IEP BECAuse if i was kept in a corner like that i would be aggresive too.the school can find better ways to handle it than that. My daughter was never aggressive untill an school aid abused her. Then she was trying to protect herself. Are you sure that at school they arent doing something. Has this just started or has it been going on for a long time. Thinking aout you. Sara
jacoxjc
08-03-2003, 12:58 PM
Your post reminded me of some of our experiences with Steven (who is now 18 and still nonverbal with various behavior issues). I retired from the Navy two years ago after 23 years of service. We found the mililtary health system generally supportive (we had to pay ourselves for some of the "experimental" treatments that we tried such as auditory intervention, and secretin), but we had a developmental specialist at the military hospital in San Diego that generally coordinated all the tests and procedures that we tried. We also contacted the local teaching hospital at UCSD where we participated with the psychology students as they were learning ABA procedures and not only tested their techniques with Steven, but also taught them to us. As far as medications are concerned, while we spent a three year hitch at Great Lakes, Illinois we went to a pediatric neurologist in Indiana who told us he was going to "cure" Steven with medications. After trying about half a dozen meds unsuccessfully he finally tried us on Zoloft. When this didn't work either, he kept increasing the dosage until Steven began crying uncontrollably and banging his head on the floor. When we immediately took him to the doctor, he said that the medicine must be working and that Steven was being forced to confront the non-autistic world for the first time and was rebelling! He wanted to increase the dose even more! At this point, we pulled up the info on Zoloft and found that he was already taking two and a half times the maximum recommended adult dosage and he was only 9 years old and 80 lbs at the time! Most of the symptoms that we had described to the doctor were directly attributable to the affects of an overdose! Needless to say, we dumped that doctor and have been very careful to do our research instead of just trusting the doctor. We have since only tried a few meds and have so far found that he does best when not on any. Sorry for the long post!
memehegan
08-07-2003, 10:28 PM
Wow, I dont know the laws in virginia but I can tell you what that school is doing would be considered abusive and neglectful in NYS. I would hotline it in a minute here. I feel for you though- even grinned a bit because all I could think of as your described the bedroom out the window episode- is I hate when that happens. When my son did that he was in fact overdosing on paxil- we also trusted a doctor and didnt know what an overdose looked like- paxil and zoloft are similar. My son used to hoot and howl in the morning- until he began serzone and zyrtec. My son is also on the gfcf diet- have you tried that one? When he was younger (he is 12 now) his bed was just outside our bedroom door to make sure he was safe. In the end your husband may have to spend some time alone doing what you do to realize that home is not the safest place for this child and your family. hang in there- when it was that bad- I designed his bedroom to look be like the room in the psychiatric hospital- I padded the walls with 4 x4 boards covered with bed foam mattresses and cheap upolstry- just stappled and hot glued them to the back of the cheap0 wood boards and tucked them behind the bed. I removed anything that could become a projectile weapon - keeping only soft safe toys and books and very few- we created a play room away from the bedroom wherehe could play when an adult could watch him. When he woke at four we had a tv with in site and he would quietly watch cartoons with prompting- but in the end I didnt have multiple children or a 10 month old- he had just one sister 4 years older and even today she seriously appears to hate him and me for all that she went through - his biggie was screaming in her ear and damaging her ear drum. the gfcf diet is what changed him and made the difference in his ability to live at home safely. -meme
memehegan
08-07-2003, 10:38 PM
ps- a helpful trick for bitting- to get the child to release you need to hold the nose closed- they cant breath and immediately release- also- I agree- he should not be in a car near your children- and I believe if you take him to an er with a crisis center and say - look he is too dangerous to live safely in our home - they have to find an emergency placement- probably a psychiatric hospital that will work on meds and seem like a resort compared to the 3 x3 box he is in. I believe there are laws to protect autistic children that should make what the school is doing inlegal and criminal. -meme