I'm new here. We have a VERY violent 8.5 year old boy with HF Autism & ADHD

Talena - posted on 01/03/2011 ( 21 moms have responded )

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Hi Everyone,
My name is Talena. I'm a 32 year mom to an 8 year old boy and 5 year old girl. I'm not even sure where to begin. My son was an amazing baby and toddler. From 4 1/2 months on, he was in the 115th percentile for overall size. He displayed exceptional intelligence very early on. Everything changed when he was about 3 1/2. He lost most of his speech, reverting to 75% babbling. He was no longer able to identify a trapezoid or parallelogram. His behaviour became very agressive. He was diagnosed with HF Autism and ADHD. We are still working on having a Central Auditory Processing Syndrome assessment done. The most notable part of his challenges lie in his intense aggressions. When he has a meltdown, he rages, blindly. He's like Dr. Jekyl & Mr. Hyde. For the last 5 years, the majority of his rage is directed at me. The professionals always told me that as difficult as it may be, there should be comfort in the the fact that he felt comfortable enough with me to behave this way toward me. He used to tell me he wouldn't do it to daddy because he was "afraid". We learned he wasn't actually afraid, but he viewed daddy as stronger than him. He's done some very frightening things. At 5, he scaled the counters to get kitchen shears to give the cat a hair cut, nearly severing the cat's ear. Also at 5, he put a plastic bag over his sister's head, telling her she'd never see Mommy & Daddy again. He would take knives and stab his stuffed animals. It was during that time that we finally agreed to medicate, as it was painfully obvious he was a danger to himself and others. As he grows, he grows so much stronger. He's always been a big boy in terms of height and weight...been very much a tank. He's a boy of solid muscle. When he was 6, he punched me so hard in the stomach, it dropped me to my knees, tears sprung to my eyes, and I almost vomited. He has left scars from bite marks, given me black eyes, bloody lips, spit on me when I'm bleeding & crying. He's punched himself in the groin, as hard as he could, repeatedly, never registering the pain, until ultimately he wet himself. He bites, punches, kicks, headbutts, throws things at me, spits on me...you name it. He's even told me he would get a sharp knife and stab it into my heart when I wasn't looking. That wasn't the only time my death at his hand has come up.

With the exception to the behaviours prior to the meds, these behaviours are only present during a meltdown, but are so very intense. We try to redirect, but it doesn't always work. He has such intense blind rages. We've always had a fair amount of success with the basket hold restraint method, but it's not working anymore. He's so big and so strong now, it takes everything I have to restrain him. At 8, he already has clearly defined abdominal muscles, without any kind of "training". Today, we actually had to take him to the hospital because he complained of back pain following his worst meltdown ever. We had fought for an hour to restrain him to prevent harm to anyone or destruction of any possessions. This was so difficult. We were terrified someone would call children's services. But, we needed to make sure he was okay...and he was. He bruised his shoulder blade bone. Fortunately, the staff was so compassionate and non-judging. I sobbed as I explained what happened, feeling like the worst mother in the world. The doctor expressed concern about supports in place and how we are going to manage as he gets bigger, as the doctor was able to experience his strength through the tests to make sure nothing was broken. I have no idea. We moved 400km 2 months ago, so we are starting all over with significant wait lists. My husband and I share fears of what the future is going to bring us. We both whole-heartedly believe that if our son had the means to do so, while in a meltdown, that he would actually kill me. We're confident that he would feel incredible guilt and remorse after the fact, but getting him to see those things in the moment are impossible. :(

I struggle with the abuse that is directed towards me. I was physically abused as a child. I've always sworn I would never raise a hand to my children and I would NEVER let anyone else raise a hand to me. Here I am, with a child who uses me as his personal punching bag and is content to see me hurt/crying. It's different than having someone else in my life that I could just walk away from. He's my son. No matter what he does, I'll never change a thing about him and I'll still always be there. When he's not melting down, he's such a loving boy. He hugs me, tries to console me when I'm upset, sometimes offers help. He's learned how to behave appropriately when someone is upset.....but getting through to him when he's locked in his rage is like having a completely different child.

His sister has SEVERE ADHD, and other issues not yet identified, but not ASD. There are many days I feel like I'm just going to crumble into a million pieces.

I look forward to learning whatever I can from this community. The right support system is invaluable. I welcome any questions. I'll do my best to assist anyone in the community.

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Katherine - posted on 01/03/2011

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I know this may seem strange.....but have you tried anything different in his diet? I have heard so many mother's say how just eliminating wheat and gluten has made such an amazing impact on their child.
He may also need to be checked for excess testosterone.
Something needs to be done, and fast before someone get's hurt badly.
Have you tried ABA?
What about a Behavioral Therapist? I don't know where you live, but out here a lot of the hospitals have great programs.

Nicole - posted on 01/06/2011

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Your story made me cry because our son is 6 and has a lot of the same traits your child does. My son also sees me as the weakest parent so I too get to see his rage, full force. My son also uses violence/rage when he has a meltdown. We are in the process of getting him diagnosed so that we can get him the help he needs.

One of his special teachers suggested bubble wrap and for him to "pop" the bubbles when he gets mad. We have only been doing this since winter vacation so it's only been 2 weeks. But he is a totally different kid. He's proud of himself because he doesn't have the meltdowns and when he feels himself getting mad, he asks the teacher for his "popping bubbles".

Before the bubbles when he would come home he was usually depressed and embarrassed about how his day went. I would look at the teacher's note about his day and see all sad faces. This week 4th day back at school, he has come home happy and very pleased with himself. Our nights have been going smoother too.

I hope I don't jinx it by writing this but I thought maybe the bubble wrap would help for all of you too. I blew it off when the teacher told me but then at Christmas time we had lots of it around so I cut them up into big squares and let him have one right after he had hit his brother. It settled him down and now he knows when he is getting mad to get the bubble wrap and looks forward to popping the bubbles.

Sending you all my love and light,
Nicki

Sheila - posted on 01/05/2011

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Hi Talena,

I am from Ontario.

Something you can do to access support is contact the Children's Aid Society....the reason for this is two-fold. First, because you are new to the area, you can actually have a social worker assist you in navigating areas of support. The Children's Aid Society's goal is to maintain and support families...not take children away (you mention CPS, an American agency that we do not have the "equivalent" of...the CAS takes children as a LAST resort...). So, you would first access support, but you would also be pro-active and help to ease your fear that someone might "report you."

Secondly, as you are in Kingston, you might try to get a pediatric referral to Toronto's Hospital for Sick Children. You might be able to access some great support/treatment.

Autism Ontario is a great support network...you probably have a local chapter. Again, you can get in touch with others who might be able to help you with support services in the area.

Queen's University is in Kingston. I believe Queen's U has a medical program...they also have a faculty of education...which leads me to think they might have a developmental program for children. You might be able to gain access to a therapuetic study that would give your son therapy/you strategies and the only "cost" would be agreeing to fill out response forms and paperwork.

You can also look into at home respite through a trained mediator. This, obviously, helps you to support your goal of keeping him home but also giving you some down time.

I would also look into family counselling in order to support ALL of you...you made quick reference to your daughter's challenges...so, to me it seems like your plate is very, very full.

Best of luck to you and enjoy Kingston!

Sheila

Amy - posted on 01/04/2011

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Our stories are sooooooooooo similar...My son is 6 diagnosed with autism at 4...My son is also the sweetest and most caring child I know but as soon as he would have a meltdown he would become a completely different person...he would break and hurt anyone and anything that got in his way and always hurt himself...he was constantly being restrained at school or having to be carried in fighting...he was miserable and so was our entire family...I remember crying everyday and breaking down while I would be carrying him into school or in a store when he would be knocking everything off shelves and biting me or punching me...it is the worst feeling in the world being so helpless and not being able to help your child... I tried doing everything naturally first and nothing seemed to work or even help ...Last year I had to start him on meds (as much as i did not want to) for the aggression because it was to the point where I was scared for him, my 3 year old daughter and myself and husband... we started him on Risperdal (antipsychotic approved for autism) last year and it's been an absolute miracle...we went from having meltdowns all day long to about 1 major meltdown a month (if that)...he is actually learning things in school and enjoying himself in school and he is just such a happy kid...I am not saying that this medicine is the one for your son but I had to try 3 different ones before finding the right one so I would just not give up hope and just keep trying to find one that works for him! Good luck if you have any questions or need to talk let me know!

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Maggie - posted on 01/12/2011

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I see that many people here have had similar situations, but you are in danger and so is his sister. You need to put locks on your kitchen drawers where the knives and scissors stay. We could tell a rage coming on with my son by his stance and his pupils would dialte to the point that you couldn't see the iris. You need to take control physically - there are professionals who can teach you restraining techniques. Your son will be an adult in our society -he must learn now to control his impulses and to suffer the consequences of his behavior. If he starts beating you up and your daughter is there, intruct her to call 911 - if he makes you unconscious, then there will be no one to protect her and you can't predict what he will do in this situation.

Christie - posted on 01/07/2011

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I have 2 sons on the Spectrum who are 13 and 10 one with HF and the other with Aspergers, My Aspie son had some aggressive issue..what meds is your son on may I ask?..We finally decided to medicate my aspie who is 10 His DR made the suggestion of using Risperdal it is an Adult anti/psychotic Bipolar med but they are finding some great strides with it for kids on the spectrum, And I can tell you from our experience with the drug it has been a

God send, We now see a beautiful 10 year old with no melt downs and the aggressive behaviors have almost totally disappeared, he even has commented how much better he feels with the med and it does not leave him drowsy or groggy,

Elizabeth - posted on 01/06/2011

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Talena, welcome to the family of autism 101. I too have a son on the spectrum that was so violent that he would smash his head into glass windows, bite himself, hit himself and was cruel to others. It was when he fell off a 12 foot retaining wall and shortly after disappeared for 45 min. at the zoo that I sought help. I chose the path of the DAN! program (defeating autism now!) This is a biomedical approach. First step was changing his diet. Wheat made him foggy in thinking, bloated stomach and giddy. Dairy was the aggressor for my son as was dye in foods. Removing these, changed my son. He was also high in metals and very very low in minerals. He was a carboholic. So I changed to CF/GF foods. Amazing things happened. Also found that his testostrone levels were VERY high and had this theory proved by Dr. Mark Geier they have a study of high levels of testosterone in our kids. We went a homepathic remedy on this. Now that he is approaching his teens, I am seeing these levels increase again. Currently I use Calm Child, Neurocalming, Ashwagandha and the big thing is Activated Charcoal to catch all those bad things floating around in his body. Most of these things you can buy at a natural store. Also Vit D3, Minerals of Life and Omega 369s are a plus. There is NOT a 1 size does all for our kids, I encourage you to find a DAN doctor who specializes in these treatments. Also weighted blankets for those melt downs can me made by you. There may be a patttern online. Chin up girl, there is recovery for your child. I live it daily for over 10 years now.

Hope - posted on 01/06/2011

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Talena,
My heart goes out to you. My son is not diagnosed yet and if he does it will be very high functioning aspergers at that, but I still feel for you. When my son has melt-downs he is just not there and I feel so alone and see his whole future flash before me and think can anyone, someone please just help us?? You are not alone, the degrees of functioning are different, but we as moms and dads feel the same. Now excuse me for my ignorance if I am about to say something stupid. I'm apologizing now. My father has a pressure on his brain from fluid that is not draining properly. This cause dementia, mobility problems and later incontenance. I am not saying this is related at all. I am going to make my point later. We wanted to keep his at home for as long as we could. We had not had surgery yet and we were going to have a shunt/drain put in his head (brain surgery). Well, it is a big decision and we needed time. We had a psychiatrist put him on some meds to help him be more tolerable and to sleep at night. The more meds he was put on the more unbearable he was. He was halucinating day and night. He became aggressive. He was horrible. We then scheduled surgery and in the meantime while he was hospitalized, the docs started playing with his meds. They said he had many red flags for dementia and elderly. and he needed to get off of them. They brought him down again. He is a little lamb now. Yes he did have surgery so that helped, but they said that his original symptoms were magnified by the meds (psychiatric, one of which was Risperadol). So now he is on just one becuase they need to lower that slowly as to not go into shock. So maybe yes, your son has aspergers/autism, but maybe the meds are just magnifying his symptoms. Maybe you need to look into a biomedical approach. Maybe it will be hell getting off of this stuff and reaching to point where biomedical stuff will help even if it is a little improvement, but aren't you suffering enough now? My son was put on some ADHD meds in the summer. It was the worst thing in the world. I was desperate I said I would not do it ever and I did. It caused him to be violent, hit and scream. He is not like that at all. He needs to be aware of his environment and not tantrum at the drop of a hat, but not violent like he was on the meds we tried. We said we would gladly take him as is compared to him hitting and screaming. I'll get off of my soap box now. I'm not against medication. It's just that psychiatric meds are sometimes difficult even for the proper doctors to administer them. Good luck and God bless you and your family. I'm sure your little boy is there somewhere and he knows you are fighting for him.

Sarah - posted on 01/06/2011

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oh telena, I know EXACTLY what you are going through. My son has been having meltdowns since he was about 3, and he will be 15 this month. They came to a head at 11 years old (5th grade)when he started assaulting teachers at school. By the middle of 7th grade, he was kicked out of his mainstream school as he was assaulting a staff member aproximately once a month. He was placed in a school for kids with legal/emotional issues. At that time he was on 2mg of guanfacine and 1.5-2mg of risperdal daily. The risperdal was high enough to knock him out within an hour or so of taking it, but he was still having meltdowns/rages regularly.

when I say rages/meltdowns, I mean psychotic breaks almost. You can look at him and *see* that he just isn't there. We literally would have to throw him to the floor and SIT on him to gain control, and he would bite us HARD. a year ago he bit me so hard that I had a 5x5 inch bruise on my arm. A friend's son saw it and asked had my son punched me! So after he started biting, we had to start rolling him on his belly and shoving his face into the floor--last january he was fighting so hard that he broke a tooth in half while hubby was trying to keep his face in the rug ( to avoid being bitten).

Last January he had a rage about every 2-3 days for the entire month. We started trying to rule out IED and bi-polar, and he was diagnosed with Mood disorder-NOS. He had some testing done at school last spring, and it showed a high level of anxiety and depression. At his next appointment I asked his doctor why we were not treating his depression, and she reluctantly agreed to add prozac to his daily meds. It took a month or so to build up in his system, but he has been a totally different child. He had a major rage in May of last year ( at school) and then not a single one until December--7 months! And the one in December was pretty much instigated by another child in school bullying him for a full 30 minutes before he snapped ( the other child was basically having a breakdown).

Diane - posted on 01/06/2011

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Your story brought tears to my eyes, and I cannot even imagine how difficult all this must be for you. This affects your entire family - not just your son with autism, and I know that must heighten your worry. What screams out to me though is the need for him to be fully tested by a DAN doctor. Meds may be needed as a bandaid to keep everyone safe (and sane), but they do not address the cause of the behaviors/anger. I suspect the doctor will find answers through testing (urine, stools, blood), such as strep, bacterial overgrowth, yeast, to name a few. If you were to have him scoped by a good GI doctor (or at minimum, ask his pediatrician to order a KUB x-ray of the abdomen), you may find major constipation may be at play. I am no doctor, and I can only suspect what possibilities might be looked into first, based on the information you shared. However, I do know from personal experience how our kids can turn into Mr. Hyde. My own son went through a spell where he would go into an intense rage on a dime back in 4th grade, where he had to be carried out of the classroom on several different occasions by several Special Ed staff when a melt down would occur that was disrupting the entire class. With meltdowns at home, he would throw every piece of furniture he could pick up down the stairs, every pillow, blanket, movable object just to get our attention. We had to put that on extinction and calmly tell him that if he were to cause any damage, there would be a punishment (loss video game play, TV time, etc.). Even in his rage, he still ensured he did nothing to get into real trouble. Then I took him to his DAN doctor for testing, which came back with several strains of bacteria and yeast. Once they were treated, our son was back to his normally happy self. We also worked with his IEP team to ensure they were all on the same page, and knew the triggers, how to deal with these meltdowns in a professional and unemotional way, and we haven't had a repeat (of that extreme level) since, and he is now in 6th grade, first year of Middle School. He is GF/CF, still under the care of his DAN doctor, and we try to keep environmental toxins (including mercury, dyes, sugars, mold, etc.) to a minimum.

These links have more info on possibilities:

Comprehensive Antiviral Approach: http://www.talkaboutcuringautism.org/med...

The Poop Page: http://www.talkaboutcuringautism.org/med...

Toxins in Food and Environment: http://gfcf-diet.tacanow.org/toxins-in-f...

Defeat Autism Now links: http://www.autism.com/treatable/index.ht...

Just some ideas to consider, hoping they may help. Our focus has been how to address the symptoms and causes before puberty, at which time his anger and rages could be magnified to the point they could no longer be controlled.

Praying that you find some answers soon,

Diane in Middle TN

Talena - posted on 01/05/2011

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Alex, the image of you running towards him actually made me chuckle, though I realize it isn't funny. My husband and I actually just talked about the very same thing yesterday. We are in Kingston, Ontario. My husband is also in the military. Interesting that you're in Oklahoma. I am originally from Oklahoma. It makes my heart very heavy to hear of such places with very limited resources. =/

[deleted account]

My son took Staterra for 2 days before he wanted to kill everybody in sight and he was screaming at the top of his lungs non-stop so we had to stop it right there and then and all the other times they have tried to give him some other type of meds we have the same issues. We tried Staterra, Geodon, Concerta, Clonidine, Adderall, Zoloft and some others I really don't remember. That IED diagnose was made by a pediatric psychiatrist and even thou the ABA lady didn't like it I really think is part of what he has. At least your son functions mine needs constant supervision and help. We know he will be with us forever because he is healthier than I am so my short term concern is how to deal with him when he becomes aggressive (I picture myself running towards him with a shot to mellow him down LOL) and the long term is what is going to happen to him after he is out of school services in 10 yrs. btw where do you live? maybe I can help you find out resources for him. I used to live in Tennessee but my husband is military and we ended up in Oklahoma with very limited resources compared to TN.

Talena - posted on 01/05/2011

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Alex...wow. I can only imagine how difficult that is. One thing you mentioned: Intermittent Explosive Disorder. OH MY. I looked it up....it could have easily been written for my son. I've never heard of it. It is something I will immediately be bringing to the doctor. It was just brought to my attention this morning that a major side effect of Straterra in young children is aggression. There seems to be soooo many different things that could be causing it. I just want my son to have a bit of peace in his life. =(

[deleted account]

I'm also new here and I have an 11yrs old boy will autism diagnosed at age 3. My son's meltdowns are not as bad as your but mine start usually if my 8yr old ADD girl starts crying for whatever reason because he thinks we are hurting her and he bolts towards you. He is BIG like he's 5'5" 190lbs and when he is like that my husband has to run out of the house because he will chase him to beat him up thinking he did something to his sister. Other than that his aggression is towards himself. He's been on Risperdal since he was 5yrs old, now he is in the super mega dose of 6ml per day (liquid). We have a fight every single day over getting him on/off the school bus. He kicks and punch you just because he is pissed off. Two yrs ago he was diagnose with Intermittent explosive disorder (abbreviated IED) because he will start his rage with no apparent reason always towards an adult. He is obsess with movies, usually Disney ones but they vary usually Barney or children movies. He is mostly non-verbal, even thou he talks, he can't make sentences. ABA was a miracle and in that yr he had it he learn A LOT and we did too. We can't even take him grocery shopping if we know they sale movies there because it is a nightmare. We go out to eat and he ask for every single one of the soda pop available. We tried the diet when he was first diagnosed and it was a big no no. Hopefully yours can be controlled because he won't have no better advocate and supporter than you.

The pros of the Risperdal: he started "talking" and making sense of what he was mumbling before, sit and pay attention for like 3 mins (now for like 10) stop banging his head to the wall/floor
Cons: he has gain weight like crazy and is always hungry, is super pricey

Talena - posted on 01/05/2011

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Amy,
I had never considered looking into manufacturers of the medications. That's something to keep in mind. My son gets a pretty hefty dose. His developmental pediatrician has gone a bit beyond the "recommended dose". My son gets 1.5mg three times a day. WOW...that's almost 10x's the dose your son gets.
It feels a bit like a mad scramble right now to find "his" thing...what will work for him. I'm terrified that we are nearing a point in which they are going to take him from me, as they fear for our safety. Just yesterday, our doctor asked if I would consider a residential program. It would involve him living at the facility for a month or two while receiving treatment to learn to control himself. I sobbed. I couldn't imagine doing that. The doctor feels we are nearing our "last resort" stage. I whole-heartedly disagree. We've only lived in this city for 2 months. I've barely been able to scrape the tip of the iceburg in terms of navigating my way through everything that is offered here. I will not give up, and I'll be damned if I allow anyone to remove him from our home. Anything they can do, I can be taught! The best place for him is with his family!
whew...sorry. Little tangent there.

Amy - posted on 01/05/2011

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Hi Talena
Yes our stories seem almost identical...I completely agree with you I would not wish this on anyone but it is so comforting to know we are not alone! We tried the Gluten free caesin free diet last year with no success but I have many friends that swear by it for their kids...We also tried alot of different supplements, hyperbaric oxygen, b-12 injections all with no results...but many people see great results so it all depends on the child...I guess that is what makes autism such a puzzle...the things that worked best for us is the Risperdal and his school program he is in...I also noticed giving him headphones helps alot because I guess the noise would bother him so much he would get very angry and meltdown...has your doctor tried increasing the dosage we had to increase it a little but he is still on a very low dose he takes 0.25 in the morning and 0.25 in the evening...the other thing I noticed is when the manufacturer of the drug changed because I switched pharmacies the medicine did not work for him at all so I had to go back the the other pharmacy and the first manufacturer he had worked great again...just little things that I found out that can hopefully help you...

Talena - posted on 01/04/2011

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Thank you to everyone for your responses. While I wouldn't wish it on anyone, it is helpful knowing others know just what we're going through.

Amy...your story could easily mirror mine. Having to carry your son into school kicking and fighting....we go through that as well. It wasn't unheard of for me to deliver him to school in such a state and have his EA's assist me in restraining him until he was sure he was calm. He is also on Risperodal. While not as effective as I'd like to see, it has made great improvements. Instead of 8-10 meltdowns a week, we now have about that many a month. Time and again, I have heard of the successes surrounding the wheat/gluten free diet. We are now giving it a shot. Tomorrow will be his first day. He's somewhat excited about it, as he sees it as "his" special food that no one else is allowed to touch. I'm keeping my fingers crossed.

[deleted account]

I have heard of kids with ADHD having bad tempers, but not in that physical manner (more yelling than anything). Have you heard of Oppositional Defiant Disorder (ODD)? If your son's episodes coincide with changes and he's using this rage to try to cope, he might fall under that category. I would go to a specialist and if possible, bring video of his behavior so they can see first hand. Have you noticed any other behaviors that might point to something else, such as Bipolar Disorder, Intermittent Explosive Disorder (IED, not sure if I spelt that right!), or other psychological disorders? No matter what the diagnosis, it would be good to find out what's going on so you can have a support team in place. You don't have to do this alone.

Alicia - posted on 01/04/2011

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Your not alone, my 5 year old has these same meltdowns. Would be nice to know there is hope. at this point my Mother keeps hinting at putting him in a home. I don't even think they have "homes" anymore.

Sharon - posted on 01/04/2011

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Your story is SO similar to mine, but here in the UK, there is next to no help, and its a fight for anything and everything. All i can say is my son is now 13 and the meltdowns have got fewer and futher between, he seems to understand his own emotions much more and talking him down works more offen, all i can say is good luck and WELL DONE, your doing a fantastic job.

Jennie - posted on 01/03/2011

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wow..my son has adhd and Im in the process of getting him a phycoeducational evaluation. I feel there is something else going on other then just adhd. when he has a melt down it is usually taken out on me. During a melt down my son will yell at me and kick me. Then once he has cooled off hes so sweet and loving. He feels bad after the fact. But wow what you have to go through. I know its difficult stay strong. and believe me we just dont know how the next day will be..It seems like your doing what any other loving parent would do.

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