My brother is 15 years old who was diagnosed with prader willi down syndrome and scoliosis. It has came to the point where my family is hopeless and has no choice but to send him to a home for treatment and care. I cannot express how much my brother means to me just like any family feels about their loved ones. I do not want him to leave he is too little to be separated from our family and put in a home. we blame our self for the background we come from because we lack education, my parents are too young, and no patience for a child with down syndrome. This might have affected his behavior since we do not know how to care for him properly yet we've done our best. My family follows a strict diet for him and is active yet that doesn't stop him for acting aggressive. My mom had meeting once a week for the past year with a psychologist to teach my mother skills to improve his aggressive behavior but recently he continues to act violent and it scares me, that he won't be able to stay with us much longer. I sometimes think to myself why must god make these children suffer? sure they're special but why should they live their whole lives in medications after medications or surgeries throughout their existence. where can I find answers? why must I feel so helpless? it makes life seem less scary after living your life with a child that shouldn't be born with this syndrome plus scoliosis which deteriorates every bone. Don't misunderstand me, their beautiful children and deserve to live like anyone else and I should focus on the things he can do and keep positive but when that doesn't work and we are forced to leave him at a home what then?
i feel your pain, my son who also has ds he is 17 in 2 weeks about a year ago he came home from school and started beating the crap out of me, my husband and burned my dad with hot water, we had him admitted 3 times this year and no help from any one, he has always been on meds for adhd since he was 10, he was outgoing, went to his prom, did great socially in school. we finally had a dna test done to see what medications will work for him, it is out of pocket 450.00 and we go to a new dr. this monday. he has been out of school for almost a year and now i think he has a learned behavior that if he hits he doesn't have to go to school. i feel your pain and know u are not alone
IF THIS IS FOR REAL, I HOPE YOU RESPOND . WE HAVE A 15 YO. DOWN SYNDROME BOY WITH AUTISME TRAITS AND OBSESSIVE TRAAITS. HE IS VERY AGGRESIVE AND IS TAKING THE LIFE FROM HIS MOTHER, IF YOU HAVE ANY INSIGHT PLEASE HELP. JEFF
Hi - by chance did you get any replies or help with this? My son is 16 and having a lot of the same issues.
Hi - by chance did you get any replies or help with this? My son is 16 and having a lot of the same issues.
My daughter is 33 down syndrome, till the age of 32 we did not had any problem with her she was behaving like a normal child. since last 9 months she has become different when she wants something or does not like somehting she puts her full hand in the month deep inside. now we have to put the mask on her face. she does not talk much and we have to ask each time if she want to go to wash room or eat that also she is very stuburn and does ot listen most of the time due to leazyness she wets on the bed. need help as it is very difficult for us to manager. we are all the time with her and dont leave her alone still she say she is sad.
Help me, I have a 4 year old, soon to be 5 in September with Ds and recently diagnosed with autism. He loves to bite, intelliquently he understands everything happening around him, he copies off of everyone as well.he used to only bite girls and now he is biting his peers, boys. He would go months without biting and then it comes back full swing. I need help please
Hi I am new to the group,
I have too much going on and I dont know what to do Im trying to stay strong for my son he has DS and has just turned 4yrs, Im a single parent and I have 4 other children ranging from 24 down to 4, my ex husband has narcissism and Its been 4yrs he continues to drag me through the courts, w
he only has one son to me and no other children! this was my second marriage, he first took my son away at 9mths old while i was still breast feeding, I had to take him to court to recover my son! it was a lengthy process and when i thought things would get better he then again had me in court for trying to swap daycare centers, I found myself served with a restraining order!! after that I though it was over but once again he has taken our son and not returned him, he is now accusing me "flogging" and abusing our son, I have only ever smacked my son when he would throw a tantrum and break things which has been increasing of late. My ex hus has lied in affidavits and didn't do him any good before!! like one lie was that he said his bond was stronger with our son and that he would have to come home and change soiled nappies that i was neglecting my son when asked by the judge how many days he worked my ex said 6 days per week and the judge said there was no way his bond could be stronger!! my son was also born with low muscle tone and was always constipated so the soiled nappies were also a lie.
I also believe my son maybe on autism spectrum but my ex wont admit he has behavioral issues he says to the court he only has tantrums while in her care! I have to rely on professional reports from my sons early intervention and daycare, they have appointed an independent children s lawyer for him, I am now looking for a fulltime job as my son is still in my ex care and I have lost my pension and carers allowance to stay at home to care for my son, I have no income and have to represent myself in court, all I can do is cross my fingers and put my faith in the system.
My sister has a 4 year old downs child who is extremely aggressive. He attacks his younger sister by pulling chunks of her hair out, hitting her with heavy objects and I even caught him approaching her from behind, about to put his hands around her throat. They are no longer left in the same room together but even under supervision, he looks for any opportunity to do her harm. No-one else in the family is at all aggressive so this isn't 'learned' behaviour. We are a very close family and I see them regularly so none of this is assumption based on ignorance. He, of course, can be a lovely little boy but that can change at a moment's notice. Social Care are very unsupportive, believing that he should be treated the same as a non-Down's child which would put him and his siblings in danger. I know that most DS children are very loving but there are a lot whose aggression is the dominant side of their personality. Please don't assume that all DS children are the same, these families need help and support, not chastisement for being 'bad parents'.
I saw a post you made in 2010. That was a long time ago. I have an 11 year old son diagnosed with Down Syndrome and autism. His ABA therapist wants me to try focalin to help him focus. He is not hyper but does have a short attention span. He is starting some behaviors such as dropping to the ground when he doesn't want to do something. He is not agressive but is strong and can also act silly and kick when he wants to. I really don't like the thought of medication. Any thoughts? I am trying to be open about this but it is hard.
I work as a live-in caregiver. My employers are a retired couple; my job is taking care of the husband, who suffers from senile dementia and several other medical conditions; also he has no mobility in his legs. Their 47-year-old D.S. son (Johnny) also lives in the house; he is fairly high functioning and works out of the house at a plastics factory that has special accommodations/coaches for the developmentally disabled.
I function as a member of the family, love them very much, and take part in household decisions. I have been assigned to somewhat of a leadership role with Johnny. My problem is that I find living with him increasingly frustrating. Basically, there is nothing in this house that is off-limits to him. He is given freedom to rearrange closets and cabinets; though he does not cook, the kitchen counter-tops, cabinets and drawers must be arranged according to his (very illogical) dictates, or he has a tantrum and makes life miserable. It is becoming difficult to have guests because Johnny always creates some kind of a scene -because people are in the house rearranging "his" things. He is disrespectful and verbally abusive to his elderly father, which really puts my back up; his mother tells me not to worry about it because the father is senile and does not realize what is happening. I disagree.
Frankly, I think Johnny deserves a firm rebuke in these cases. His mother spends a lot of time "sweet talking" trying to get him to agree to behave better; she seldom requires him to apologize for his rudeness, and she seldom effects a change in his behavior. Basically what I see happening is that Johnny keeps all of us focused on what he wants all of the time; if he does not get it, WE pay. Everything is fine, he is very sweet, until his dictates are not followed -then watch out. He is overweight, and meal times are very unpleasant because he becomes belligerent if he cannot have seconds/thirds/high calorie beverages/dessert. I dread sitting down at the dinner table because I know my leadership will be challenged and his mother will end up giving in to him to avoid his belligerence. Johnny seems to know this, also. Ditto for the daily shower; it is always an argument between him and myself with him appealing to mother until she overrides my decision. He has become quite adept at making me look like the "mean" villain, and often creates situations/stretches the truth, trying to cast me in an unfavorable light, which I find stressful. I am frustrated because I have the leadership role without the authority to back it up. His mother tends to override my decisions because I do not make all my appeals to him in the sweet, fawning way that she feels is best for Down Syndrome. I am frustrated that she lets him speak to me and "dad" in such a rude and disrespectful way, yet shields him from any consequences his "fighting words" would normally carry. It is like he throws a bomb, then goes running back to mama for protection. You may think this seems petty, but when you are a man and have to live with this 24/7 you get quite demoralized by it.
Mother tends to draw Johnny in very close to her and side with Johnny against Dad and myself. Mother and Johnny enjoy discussing and analyzing other's shortcomings. Somehow Johnny's behavior in never Johnny's fault. It is always dad's fault or my fault or a "misunderstanding" on Johnny's part. I can frankly see that some of this misunderstanding and lack-of-hearing is on-purpose.
His mother bristles when I use a firm tone of voice with him, but frankly I think he needs a firmer hand. When his mother is out of the house he becomes VERY respectful. But as soon as she comes home he starts in with the whiny, tattle-taling, mama's-boy routine -until mama's blood pressure has risen to dangerous levels and I am ready to leave. I am at a loss. It is nearing the time that he returns home from work and I am dreading it, as usual.
We have been there as parents of an adult who has Down S. Do the best you can for the safety of others and your loved one. No one knows what causes the outbursts. And if you need help, get it from the community. It is a long, difficult road. We placed our son after he was out of school. He is 44 years old and still has outbursts each year about 4 or 5 times. Love him but this causes grief as a parent.
I do not use the nutrivene any longer. Mostly due to finances. I have several other things that I use that are seemingly or more benefit to him. I like the Nurtivene and would continue to use it, but with it's cost (which is not unreasonable) coupled with cost of everything else and tough economic times it's hard to pay for so many thing. I would push throught the expense though if I had seen any difference from it's use. Used it for several months with no visable results. The company is very reputable and the main fella will talk to you and has good info on down's kids. Has one himself if I remember correctly. I'm sure from a nutrional point it is a great product because it is packed with good stuff and safe. Just had to choose and went with the things that seemed to have at least some affect. For me it is dietary, lots of water, elimnate sugar, use quality products like organice coconut oil 3 tsp 3 X a day, apple cider vinegar tblsp in glass of water. Elimnate toxins much as possible, (safe soap, shampoo, no flouride toothpaste), Vitamin B12 and D spray under tongue twice daily, Ashwagandha ( herb that helps with brain function) and supplement with Spirulina 6 tabs once a day with food and lastly a nutrional product from Halleluah Acres (ONline) which is called "Barleymax". It is a green superfood product you put tsp in water. Has great healing properties.
. This combination with diet, no junk food or drinks has given me some visable result. Also found on Natural news.com's store and porduct called "Oxy Powder" that takes place of toxic Polyethylene glycol quite well and safely.
Hope this helps.
did the nutrivene work for your son? Is he still taking it, can anyone shed a light on this high dose vitamin?
did the nutrivene work for your son? Is he still taking it, can anyone shed a light on this high dose vitamin?
I am actually replying to myself. I have just found information that could prove valuable to anyone here that has been dealing with extreme behavioral issues. The use of Polyethylene Glycol (under a poplar brand name which I will not mention but sure all what it is) has been known to cause major issues with many. The regular use of it and/or over dosing of it can and has caused many to become toxic from it. Eventually causing major health issues and even death. One of the many side affects including destroying the kidneys is "neuropsychiatric events" which include autism, dementia, depression, schizophrenia, multiple sclerosis, Alzheimer’s and Parkinson’s diseases, and similar others. Also the danger of the following. (let me some this up, most if not all behavioral issues I and many have asked about are among those "events that can occur)
"● Nephrotoxicity: PEG has been connected to nephrotoxicity, a euphemism for kidney damage and it is counter-indicated for patients with kidney disease. This particular “side effect” is most likely related to the hydrolyzed (separated in water solution) molecules of ethylene glycol.
● Urticaria: PEG may cause allergy-related hives (urticaria) — raised red welts on the surface of the skin. Children are particularly susceptible to hives, and face a grave risk of anaphylaxis — a life-threatening allergic reaction that may develop within minutes or even seconds after ingesting a PEG-containing laxative. Links between PEG and urticaria have been documented as far back as 1991.
● Esophageal perforations: Also known as Mallory-Weiss tear, esophageal perforations associated with polyethylene glycol electrolyte lavage solution have been reported as far back as 1991. These tears and related bleedings may occur in the mucus membrane of the lower part of the esophagus, or upper part of the stomach . "
Research has also shown the FDA is aware of this BUT has decided not to address it at this time. Do you're own research and form your own opinion, but as for me, my son is done with this stuff.
I post this because I have been through a literal hell with my son sliding further away into bad behavioral issues which has imprisoned him and me now for a 5 years (Now 23) with NO answers from Doctors. except to dope him up.
This with a boy, now 23 who was previously the light of any room he entered.
I post this because I want others to know what I have found and if you have these problems and your child uses this poison (which is a form of ethylene glycol, which is anti-freeze) then you may want to look into this and discontinue and found something safe and natural. I trusted Drs that this was safe, but should have known better.
I also post this because I know that constipation is a regular issue with many down's children (especially considering many having dealt with Hirschprungs disease) and this is the drug of choice to deal with it.
So maybe this will be a help to someone.
Reading your post made me think of my situation. My daughter just turned 15 and she is having behavioural problems especially after she started a new class in school. I think any kind of change makes them act out, more so because they are not able to express it verbally. She has hearing aids in both ears and wax builds up quickly so most of the time she's not hearing well. You are right, they need consistency and more care. I don't think its a good idea to give medication unless you are sure about the ADHD. Why don't you try other schools? Or consult a behaviour therapist?
We are looking for a psychologist, but they are so expensive....
Unfortunately, in my experience, the Drs have NO answers. And to be honest with you I have doubts as to whether they really want to put the time into. Down's people, like others with disabilities are not high profit. But also it seems even those who are "more profitable", their only answer to anything these days is to drug you. What gets me is they do this with no scientific evidence that these drugs will work and not to mention the long list of health dangers involved. I have experienced a similar situation with my son, although not as bad as yours and no seizures, thank the Lord. I would suggest dietary measures, such as eliminating GMO's, BPA, any of those frutroses (RE: high frutrose corn syrup), major reduction in sugar, less meat and more vegetables, fruits. And in Vegetables, fruit, more raw than cooked. Maybe look into a high quality colon cleanse.There is also other detox's that can be helpful such as a heavy metal cleanse using a good grade Chlorella. I suggest Dr. Mercola's sight and he has good quality for fair pricing. You'd be amazed at what this may accomplish. BUT if anything try these 2 things. 1) Coconut Oil- a teaspoon 3 or 4 times a day. Has been found to reverse alzheimers symptoms. Not saying it has anything to do with that, but point is, it aids brain function. I have found it to be helpful with my son, and it has many other health benefits also. 2) Get an herb (and suggest Dr. Mercola) called Ashwangandha. Also found to be very effective for brain function and I have also seen improvement with my son.
But if he is on meds, check about any side effects of any of this with the drugs he may be on. My hope is he'd be able to come off any meds. You and he will be better off. But if he does he'll most likely have to be weaned off.
You'd be surprised at how these things may make a difference. And it's all safe and what the heck, you have nothing to lose to try. Have lot of other thoughts. Let me know if I can share anything else with you. Not an expert, but my trial started about 5 years ago and I have exhausted the medical community and only results I have gotten have been in this area. At the very least, he will be a healthy man.
My DS brother is the best brother I've ever had. He has gone through stages but now we are experiencing one of his worst stages. My brother is 27 and two years ago his moods started to change to the extreme. He became withdrawn and wasn't communicating with family as much as he used it. He was over weight and stopped eating and lost over a hundred pounds and then he started having seizures. These past 2- years have been tough on my mom who is his primary caregiver. He has begun eating again and is starting to put back on some weight and is beginning to interact again... But now he has started to have, unprovoked, violent attacks towards my mom. He will slap her, hit her, and throw things at her. This past week his violent attacks have been daily. Today, they went for a walk. My mom was in front of him and they were just laughing and enjoying the day, suddenly he attacked my mom from behind and he had her in a choke hold, lifted her up, and threw her onto the the pavement. 10-seconds later he stood there saying nothing. My dad walked them home (just a few houses away) and my mom cried and doesn't understand the attacks. I'm scared of my brother now, who normally is so loving and fun to be around with but know I don't trust him with mom who is an active 65 years old. The doctors keep changing his medications, for moods, etc. but his seizure medications are constant. We have put away all knives, glass, or heavy objects he can get a hold of to throw at my mom. He can now only use plastic cups and spoons and he can't be alone w/ my mom anymore and I'd adviced to my parents to lock their door at night since my dad was awakened early in the morning last week to my brother hitting him with a clothes hanger. Surprisingly! My brother is very lovable and kind and has touched all our lives... But now I can't trust him and I'm scared for my moms safety. I don't want to think about putting my brother in a "special home" and quite frankly, my mom would not allow it. But I don't know what to do, I don't know who to turn to and the doctors don't either. I found this site as I was Googling "D/S violent attacks" hoping to find some sort of answer. Any advice, suggestions, or referrals is desperately needed. Thank you for giving me this opportunity to talk to a community of families who have a loved one w D/S. At the very least, now I know we're not alone.
Mother of a 14 year old son with Downs. His first 4 years we lived in NJ, he went to public school but was in a self contained class with about 4 kids and 2 teachers. While in school he was friendly, was learning and succeeding in all aspects. Things between my ex and I weren't working out so we seperated and I relocated to Georgia. Now in Georgia he is having a lot of behaviorial problems and though I am seeing some of it at home, the majority of it is going on in school.....or so the teachers say. He's had tube put in his ears 3 times so far so he does not speak too well and his vocabulary is very limited so it's frustrating to me as a parent because he can't explain to me what's wrong and I know it's frustrating to him as well because no one understands him. My problem now is that his teacher is suggesting meds for him because she thinks he has ADHD. I took him to the Dr. and she said she doesn't see him as being that hyperactive child in any of his visits and I told her at home he is just a child (he has his good days and he has his bad) but it's not to the extent as they are making it seem in school. To me, I feel like the school is just trying to make their job easier because since being here he fell behind as far as education but they don't have the programs and stuff like they did back home in NJ because they say the town is "poor" I do all I can for my son....I work with him everyday because I know he has the potential and I know he can do the work, but I am also a single mother that works and he needs to be in school. So am I wrong for not wanting to medicate my child because they think he has ADHD? Also he really doesn't have a defined and consistent schedule in school like he does at home, and I know for a fact that is an important thing when it comes to children with Downs......consistency
leaha how old are you ?? i think you should get you self a dictionary and look up the word disease you wont find downs under that catagory i have 4 kids my son has downs he,s the most funniest little man he takes a little more time to learn things but when he gets the hang of stuff im the proudest mother ever i also couldnt keep count on how many times a day he hugs and kisses me and says he loves me he adores his 3 sisters and yes some times they argue and he hits out but so does his sisters and cousins i use time out for all my kids and he,s no differernt so id just like to say to you leaha i would hate to have a friend like you asking a question like that on this forum seems to me that your just mad some one hit your chid sure that can happen anytime in life regardless of down sydrome or not !!!!!!
I have been reading all the posts on this sight and I am glad to hear my family is not alone with the behavioral problems regarding Down Syndrome children. I have a 5 year old grandson with Downs. The love of my life. Mostly for me he behaves pretty good. However, his behavior for his mother, my daughter, is some times overwhelming. He does the throwing himself on the floor when he doesn't want to go some where. He has thrown toys just to throw something, not out of anger. He is still not potty trainined. Don't get me wrong, he can be the most adorable and good little boy, but some days he is like a totally different child. My daughter is 8 months pregnant with her second child and is besides her self most days.
Wow Robby he might just be right because the child I do work with can get very violent to his mother and has been to me also. We need to take something away from him and he really got very hurtful with everyone in the room I mean he is very strong and takes fits of rage out on others. Yes every case can be different,this child cannot be redirected when he excels,he will go after you and hurt you, other then that he is a beautiful child of 11 and we all love him he can be and is very pleasant most of the time but the temper is dangerous as he is extremely strong it took two of us to get him to let go of us.
My daughter is 6 yrs and has been doing the same thing. Our behavior specialist at the therapy school got one of the blue squishy toys from Dollar Tree to redirect her from 'self-exploration' to dangling or throwing this toy. It has worked wonders! It has little plastic nubby strings on it that she likes to dangle it from. Yes, this is considered 'stemming' and usually not an encouraged behavior most of the time, but it draws the attention of the child to something else besides what's under their britches. It also helps with her aggressive behavior since I give her a 'target' to throw it at. She has such a good throwing arm that I make sure it's a pretty good distance away from any breakables, but it makes her focus, which helps with her coordination and motor skills. Hope this helps. :)