AUTISM RUINED MY TRIP! Anger, rage, paranoia. Please help.

[ducklite]

I suggest finding a neurologist in your area that offers EEG biofeedback. You can do a web search on EEG biofeedback to learn more about it. It helps a variety of disorders, including behavior problems, aggression, anxiety, and autistic spectrum disorders. Many of these problems occur because some parts of the brain are overused and overly stimulated, while other parts of the brain are under-used and under stimulated.

The doctor can read a person's brainwaves to determine if the brainwaves are normal or abnormal. Then, with a few electrodes attached to the head and ears, the patient plays video games using only their brain to control the game. After a time, it re-trains the brain to function in a more normal manner. It's painless, the results are often permanent, and it works.

I saw a show about this on the Discovery Health Channel last week and the results were quite impressive!

Stay strong, follow up on this, and just know that there really is a brighter future for you, your family, and your son.

Actually it does NOT work on everyone. My son tried this for about a year with minimal improvement. When someone has an organic chemical imbalance in the brain, it is not fixed with biofeedback. Biofeedback can help with ADD, weight loss, smoking cessation, and OCD. It will not help with bi-polar disorder, schitzophrenia, or many other mental disorders.

Anne

 

[TEWINOHIO]

I agree with many others about the meds. They are not for everyone...but I would not discount them. In particular, if they were not prescribed by a doctor that is very familiar with medications and children with devlopmental disabilities. If the meds you tried were not prescribed by a specialist in this area ( such as a neurologist,) or the treatment was the same as a child that is diagnosed as ADHA because many of the symptons were similar...they may have missed the mark. My son takes relatively low doses of a couple medications....and it makes all the difference. Just a thought.

 

[kandb]

You say that your ds wanted to hit a woman for looking at him. You use physical force on him, so why shouldn't he want to strike out at someone as well? He seems very agressive but you seem very agressive towards him when you physically strike him. Obviously, you striking him is not helping. I think you should consult with a therapist to learn how to cope with his disability. Linda

 

[minkydog]

Can I just give you a hug? It's an awful feeling when you have to admit that your child is ruining everything. I've been down that road with my oldest. He isn't austistic, but he's on the spectrum. He became ultra-belligerant, rebellious, obnoxious, and horrible when he went through puberty. It was several long, awful years in which he daily poured out his rage and hatred on me. We tried meds. We tried counseling. I worried that he would kill me in my sleep or burn the house down. Nobody took me seriously. Finally he tried to kill himself--cut himself 87 times and took pills. That landed him a stint in a psychiatric hospital for treatment of bipolar depression.And that's when I began to get my life back. We did some family therapy--for me-- and everyone went on antidepressants. We were the most dysfunctional family on the block, but we learned a better way. Eventually.

There is no magic. I don't blame you for feeling angry, gypped, disappointed, embarrassed, or whatever you feel. I've been there. No one can throw a tantrum like an autistic kid, unless it's a bipolar/autistic kid I feel your pain. I hope you can get yourselves into family therapy, with and without your son. It's hard to hold a good marriage together when there is so much strife.

 

[SelfEmployedDebtFree]

Hi again! (feeling much better...)
Yesterday evening he was pretty good. Today, he has been a PERFECT ANGEL!!!

Thanks for the replys.

EEG... Tried that. BUT it was a long time ago. Ive had one too BTW. Painless.

Here's an interesting thought. I had an EEG when I was in high school. (I really hated high school) I was having migrane headaches, dizziness, blurred vision. When school was out it all went away!

I dont remember what the outcome was on my son, but its only been about a year or two.

I think the foods REALLY do play a large part. We were on the dining plan, and we all ate WAAAAY too much. Personally, i wont do the DDP again. Dyes really screw up some autistic children. we learnt this one trip too. He did eat some stuff with dyes. Particulary the first night, so that may have something to do with it. I have heard (as one person noted) MANY accounts of milk causing problems with autism, but it doesnt seem to bother him. Cheese on the other hand does. It seems to make him angry, and as I recall he ate lots of stuff with cheese. So foods are definately a very large posibility for part of the problems.

We have a new family member that may have played a part in this too. Shes a 1 year old solid white spoiled rotten Golden Retriever. I think he missed her a lot, though he swore he didnt.

We are trying to cancel our APs. Were gonna take some shorter, closer to home trips this year. We plan to do Dollywood one day, and Bush Gardens one day. We will probably resume Disney next year. Weve only been 8 times in the past 2 years... He might be burnt out on Disney! (Is it illegal to say that here? )

 

[freckles and boo]

You won't get any flames from me. My husband and I are really just beginning our journey into the world of ASD with our four year old daughter and I absolutely understand your frustration and need to vent. This is (usually ) a very friendly community of strangers, but I would suggest you make contact with one of the professionals (social worker/physician/therapist?) in your son's life and let that person know that your family really needs help. REALLY NEEDS HELP. Speak as slowly and loudly as necessary so that someone understands that your child's crises are getting harder and harder to manage. Be the squeakiest wheel they have ever heard, because your child is worth it.

Also, the spanking thing ... I don't want to judge your choices but for us spanking definitely caused more problems than it solved with both my "normal" six-year-old and my autistic four-year-old. Even though I rarely swatted their butts and it was just to get their attention, they were both aggressive for days afterward. For the last couple years we have had a "No Hitting/Keep Your Body to Yourself" rule for everyone in the house and it amuses both of them that mom and dad have rules, too. It helps me, too, because I don't have to worry whether I spanked out of anger and really caused pain.

As difficult as it was, I am really glad you had some fun, too. Hang onto that.

 

[disney-super-mom]

Actually it does NOT work on everyone. My son tried this for about a year with minimal improvement. When someone has an organic chemical imbalance in the brain, it is not fixed with biofeedback. Biofeedback can help with ADD, weight loss, smoking cessation, and OCD. It will not help with bi-polar disorder, schitzophrenia, or many other mental disorders.

Anne

I did not mean to imply that it works for everyone. The OP was asking for help for a child with autism, and EEG biofeedback has helped those with autism and "related" behavioral problems, such as aggression and anxiety. Autism is NOT caused by an organic chemical imbalance. The topic had nothing to do with mental conditions such as bi-polar disorder or schizophrenia, and neither did my response. I certainly hope that no one was confused by my response.

I also want to mention the EEG biofeedback is not a quick fix. It takes many, many sessions for it to have an effect and work. A person may need 20 sessions or more before you START to see improvement.

Regardless of their chosen course of action, I wish the best to the OP and family.

 

[carrie s]

Im so sorry for what your going through.

I read that kids with autism do well on gluten free diets,gluten is in wheat,rye and barley.That might be worth looking into.

 

[sherreis]

I am feeling your pain as a lot of what you wrote are my fears for our trip in November. DS11 has ADHD and shouldn't be a problem on the trip as long as he gets his med in the morning. He'll be fine. It's DS6 for us - he's not been diagnosed as autistic but he sounds like your DS in a lot of ways. He gets violent and when you try to punish him, all of a sudden he's trying to hurt himself. We've found a child psychiatrist and we're trying meds. He's better but nowhere near "normal." We wonder how are we going to handle him at DW if he starts having his behavior problems. Who gets to take him back to the room for "quiet time?" I do plan on breaks on most days to get the boys (and us) away fom the constant stimulation.

I tried the special diet for awhile for both boys. At first, it seemed to work a somewhat. We stayed away from milk, wheat, preservatives, and dyes. They're everywhere. Here's the link of a local doc here in MD, where I started my research on dietary changes. I've never taken my kids for testing to him -- very expensive.

Allergy Connection

 

[LindsayDunn228]

Um, wow. I honestly have to say I am disturbed by your post.

I have no advice except I think you and your wife need to take a vacation together, away from the kids, and the kids away from you. I'm sure you don't mean to, but you sound so resentful of your children, both of them.

 

[PrincessShanShan]

I'm a special education teacher. Right now I'm working with preschool students. I have had many kids over the years who were diagnosed as having ASD. I'm by no means an expert, but I really think a behavior specialist could be a great help to you and your son. I know our local school district has someone hired specifically to work with kids diagnosed with ASD. Parents can request a meeting with this person but many times they are unaware of her services. I would speak to your son's teacher and find out if there is a person in your district that you could meet with.

Meds are a very touchy subject with me. I'm not a big fan of them, but I do know there are several types out there and just because one set didn't work doesn't mean something else won't work either. I would talk to your son's pediatrician and see what he/she suggests.

One thing that has worked with my kids who have ASD, is visual cue schedules. I'm not sure whether they would work with your son or not, but it wouldn't hurt to try. Many times transitioning is really difficult. Not knowing what is happening next or what is expected can cause a child to spiral into a tantrum. The visual cue schedules can help in that the child always knows what's going to happen next and what is expected of them. It's not really difficult to use but does take some time to set up. I use the Boardmaker Program. You could probably Google it and see if you think it's something that might help your son.

Hang in there. Hugs to all of you!!

 

[Alex2kMommy]

I just wanted to add that I'm so sorry your vacation wasn't the wonderful, fun-filled trip everyone expects and deserves.

I have two little boys (DS6 and DS2) who are both usually very well behaved. We just got back from our first trip to Disneyland, and the first 2 or 3 days there were a bit rough. The boys had suddenly turned into trolls! Bickering, screaming, not listening, talking back (the older one, obviously), talking OVER us when we're trying to talk to him or talk to one another...! DS2 tried to run off at every opportunity, and did manage to escape a couple times; fortunately he was found within minutes, but I swear my heart stopped each time.

We really wondered at one point if taking the vacation was a mistake (just as you obviously did.) I think Disneyland/Disney World are sensory overload for ANY kid, let alone a kid who is sensitive to this kind of thing. I haven't heard other parents talk much about it, but we think this is why our childrens' behavior was so outrageous and unlike them. We parents were so taken by surprise by the behavior as well as constantly being out in public that we didn't react as we typically would. Once we started laying down the law, just as we would at home (time outs, explaining that we really didn't feel like treating them to anything when they behaved so badly to us, etc.), it was like a signal to the boys that things were predictable now and they could settle down. Thank goodness!

I say all this not to minimize your experience in any way, but to point out that it was overwhelming for us as well, and I bet we aren't the only parents who felt this way.

I do hope you find help (whether in medication, counseling or some combination) for your son. As hard as it is for you to experience as his parent, I can only imagine how frightening it is for him to feel so out of control. Keep searching, do research online to inform yourself of what kind of help is out there and what you're willing to try, and find a support group for parents of ASD kids. Friends with ADHD and/or ASD kids have benefited greatly from support groups and learned a lot from other parents.

Good luck to you and your family!

 

[Lewisc]

You say that your ds wanted to hit a woman for looking at him. You use physical force on him, so why shouldn't he want to strike out at someone as well? He seems very agressive but you seem very agressive towards him when you physically strike him. Obviously, you striking him is not helping. I think you should consult with a therapist to learn how to cope with his disability. Linda

Makes sense to me.

It also sounds like the parents need a vacation without their son. They also need to figure out how to prevent the 4 year old from emulating their son.

I don't have any answers. I hope some of the suggestions other posters made regarding therapy and medication help.

 

[RNMOM]

I have a son with ADD and ODD. I don't have to deal with many of your issues and he is now 19 and the best he has ever been and on no meds now.

I will go on the offense here and say something you won't want to hear. I apologize if I hurt your feelings but feel it must be said.

You can not expect this violent child to be able to learn non violent behavior if you yourself treat him with violence. You can not spank, slap, shout at a child who is doing this very same thing. When my son was just 4 he was lashing out at school and home. The very best advice we got, and worked, was to stop punishing him. We were advised to take him aside and explain what he did wrong, be sure he was listening and discuss briefly what the right thing to do is. We then let him go about his activities. I can honestly say it worked like a charm. He was being punished so much at school and at home all he had was negatives in his life. We instead tried to give him positive reinforcement and it worked, for us. We didn't try the medication till he was 7 and it worked okay but not great.

Please, get some help with a therapist who regularly deals with these children. I do think it might help all of you if he were to go into a residential program. You need the break and so does your family. Your insurance may help with the financing or there may be state or federal funds available for him or even scholarships through the schools. I was lucky, I had my son working with an occupational therapist who also had a speech therapist, psychologist and psychiatrist in a group and the care was terrific. They even went to the schools for us.

Get some help. I am worried about your ability to keep your son safely in your home and what it is doing to you.

 

[JESW]

Oh my...I really feel for you... I have a ds11 who is an aspergers kid and a dd7 who isn't so I have the same age range with kids. My dd ADORES her older brother and it so hard to see when he is mean to her. But like your dd, she knows how to push his buttons..

I could write a book about our life with an aspergers kid. It is hard, very, very hard. We made the decision to put our son on meds 2 years ago when he was so depressed and said he just wanted to die. School was a nightmare so we had him evaluated and diagnosed. We put him on Abilify and it made a WORLD of difference! His dr. said it would help him "connect the dots" and it certainly did - he was able to participate in class and communicate with his classmates - among other things. We just had to up the meds a bit.

So much has happened over the years...dealing with our son and his issues has been very hard on our marriage. I also find it very hard on my own health and well-being. As a side note, I am being treated by my dr. for severe anxiety problems due to dealing with our son on a daily basis.

We had a brain scan done of our son to see where the "problems" were and he is currently getting bio-feedback every week. We do see improvements and he has come a long way over the years, but we still deal with the day-to-day issues. School is very tough this year as he is now on block scheduling with lots of changes - and these kids don't do well with changes! He has an IEP and we were in school for an emergancy meeting with the team to make some modifications on monday. It just goes on and on...

We are fortunate to go to Disney 2x a year. We have tried other vacations, but Disney works for us because it is familiar to ds and he can make choices or where he wants to go and what he wants to do. My dh has issues of his own, so when things get to be too much for the two of them they can go back to the room and dd and I go off on our own. As the kids have gotten older this has gotten much easier.

I do feel for you and your family. If someone doesn't have a child with issues then they just don't understand. I love my son with all my heart, but I don't always "like" him - altho it is his behavior I don't like. His behavior has ruined more days and activities that I can even count. But my heart breaks for him as he has gotten older he can say that he doesn't want to be this way but can't help himself.

I hope that things improve for your family....

Jill

 

[TBGOES2DISNEY]

I can't even begin to imagine what you are going through. My kids have no behavioral problems, and sometimes when they act up - like all kids do - I want to pull my hair out!

It sounds like just sharing on here what happened was therapeutic for you, so why not look for a support group with parents who are going through the same thing as you? It's always nice to have someone say, I know exactly what you're going through! or to offer you advice or just an ear!

God bless - I'll say a prayer for you!

 

[LisaBi]

No advice - just hugs. My own son has Down Syndrome with only mild behavior issues. His good friend and schoolmate sounds a LOT like your son. I don't know the details of what his family has been thru and what they've tried (meds, behavior mod, etc.) But I do know that while life is still not easy for them, it's a LOT better now than it was 3 years ago. The child is now 12 - so maybe age helps some. His mom is even now comfortable letting him go with another family to a short outing - 3 years ago that wasn't a good idea.

LisaB

 

[dzorn]

I would look into the diet further. DD has been gluten free for a few years and it really helped.

Spanking it not the way to go. These kids are on usually on sensory overload. Usually they do not even understand why they are doing these behaviors. Punishing them for something they have little control over is not right. You would get much better improvement with positive reinforcement.

You need to come up with a strategy for him to do when frustration is getting to be to much for them. If you cannot handle your furstration how do you expect a child to cope. You both need to learn coping skills.



Denise in MI

 

[disneydenisel]

I can totally understand your frustration and pain. I have a DD7 and DS4, both ASD, among other things.

I'm not sure what support I can offer, but I can try. First of all, someone once told me that if I wasn't going insane, I would BE insane, so know that it is perfectly fine to feel like you are going crazy. You are not alone. You and your family need help, and it's good to admit it. You can't do it alone and you don't have to. You need friends and a support group for you so that you can vent, and you need some experienced therapists for your son.

Now if your son is truly Asperger's, then he is bright yet socially awkward. He, like many kids on the spectrum, probably has other issues, like sensory integration dysfunction, auditory processing disorder, social and emotional delays, anxiety disorder, seasonal affect disorder, etc. He may thrive on routine and need a stable environment and things and events he can depend on. Someone mentioned a visual schedule, which has worked very well for both of my kids.

If he has a diagnosis, then he should be eligible to receive services at school. Speech therapy for pragmatic speech and social interaction should be available, as well as a behavior program (ours is called a home program) which works on his social behavior, turn taking, etc. We have a consultant who observes our DD7 at school, interfaces with the teacher and aide, and provides a play therapist to come to our home and school to work on social skills and behavior. We have had such a program in place since DD7 was 3 and since DS4 was 2.

Our DD7 also sees a counselor/psychologist weekly to work on anxiety issues. DD7 has severe anxiety disorder which erupts into tantrums at home, school, many places. She is fearful of many things and failure sensitive. The psychologist suggests coping skills for her and ways for us to deal with her anxiety attacks. Most of it involves empathy. Physical discipline is not recommended, as it makes matters worse and can make her physically violent.

I would imagine that your DS8 is NOT doing these things on purpose to ruin your vacation, your life, and your dreams. It is not his fault. He needs help, and the only way he can deal with whatever he is experiencing is to lash out in mean, hurtful ways. If you can try and stop blaming him and making everything out to be his fault, this will help you and him immensely. He is hurting, he is lost, he needs support, empathy, nurturing and understanding. He may need therapists that aren't his mom or dad or relatives.

We use "social stories" a lot...simple written pages that we write up that go through different scenarios, like a trip to the dentist, or WDW, or a hotel room, or school, or the bus, or a field trip. We read these together and try to prepare our kids for what is going to happen. For a vacation, we are talking about the trip weeks before it happens. We try and prepare our kids and ourselves for changes. I know it is hard. DD7 has huge outbursts over a broken vending machine, or a mistake she makes on her math test. If it rains or is cloudy, she is a wreck (seasonal affect disorder). If sounds are too loud, she cries (auditory processing disorder). During our trip to WDW last year, she went on 1 ride in 6 days, so that's all I went on . Expensive tickets....but she enjoyed the parks, tolerated the noise and crowds, didn't freak out over the room, didn't scream on the airplane "turn this plane around" like she did 2 years ago. I call that progress, and I treasure each step she can make.

We had to give up trying to be a "normal" or "typical" family, whatever that is these days. We cannot expect our kids to do all the things other kids do, to stay at birthday parties without screaming or to go on long trips. We have to bring a lot of distractions and special surprises on long plane and car rides. We have to have realistic expectations for what we can expect from them. It's not their fault that they have neurological and social issues. All we can do is try our best, try and maintain control, and love them.

I lose it a lot. Every day I wonder why I had kids. Every few months I think that I can't do this anymore. DD7 kicked and yelled at her teacher today at school, and I'm freaking out about what will happen next. Will she get expelled? Will I have to home-school? Will she get better? Sometimes when I get so stressed out, I just cry or eat a lot of junk or chocolate. DD7 says, I want to run away, and I say, can I get you a suitcase?! I'm not proud of some of the things I think or say, but it's normal to be frustrated, angry and sad. I apologize if I say mean things because I am angry, and this teaches the kids to apologize to me/others when they say or do hurtful things.

We all need help, so take a deep breath and try and formulate a plan. The least of your worries should be your DVC APs or any planned vacations. You'll need to prioritize services for your son and your family, and change your expectations. Later on, you can take those steps toward a more enjoyful WDW trip or a trip to wherever you want to go.

We spent one Christmas in our minivan at my sister's house because my DD couldn't stand the noise and crowds. Now we can go inside the house. We are thrilled!

 

[KathyRN137]

Wow. I really feel for you and your wife. I have an 8 yr old autistic son and he often breaks out into rages, kicking and biting. His 10 yr old sister just can't seem to resist scolding him, and then wonders why he lashes out! His disorder is the biggest stress in our lives, as is your son's in yours.

I want you to know that there are a lot of other parents who know that your life is very hard and even though we can do nothing but , at least that's something.


God bless you....

Kathy

p.s. Don't let your son's case manager off the hook; he/she should really be your biggest resource.