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

[SelfEmployedDebtFree]

Well, It was just horrible. I just wanted to crawl in a hole and cover myself with 6 feet of dirt. A bad thing to say about a magical vacation. I dont really expect anyone to understand. My 8 year old son can be such a sweet child. As we pulled out of the driveway for the 10.5 hour drive from NC, the bickering began. My daughter is 4. She's NOT Autistic, but her brother is, and she might as well be, because she looks up to him and mimmicks his every gesture. My son's official diagnosis is asperger's Syndrome, but its much worse than that. He chants loudly, and is EXCESSIVELY rebellious. He disobeys continually. He hits, kicks, screams, and pitches fits when any little thing dont go his way. He's obsessed with "recycling"... he stuffs his shoes with used paper towels, napkins, candy wrappers, and such. If you throw away a paper cup he used, or a straw, or even a TWIG or piece of mulch, expect a full blown fit. (Complete with the usual screams {almost always directed in my general direction} of such "You hate me!" "You are so rude to all of us!" "Why do you BEAT ME so much???" "Why cant you just be nice!" "You dont belong in this family!!!")
I'd like to take a second here and defend myself. I DO believe in spanking my children. I do NOT beat them. I use my hand or one of the large Lowes paint sticks to the butt, and only when ABSOLUTELY necessary. I do NOT use a dropcord, wire, 2X4, or baseball bat as one would imagine by listening to my loving son (sarcasm). The problem is his condition, not the discipline or lack of it. That subject is kinda funny. When he pitches a fit in line, 40% are "probably... Im guessing" thinking "That kid needs a good paddling! If he were MY child I'd....." then another 40% are gazing at me just WAITING for me to do SOMETHING, but NOT spank him by any means. If I DID spank him they would be far too eager to get security. (It HAS happened before, and more than once) and the rest are trying to just mind their own business and ignore it. Those are the ones I like, and those are the ones I appreciate. you cant please everyone. You know the old cliche... Opinions are like...

Heres one small example of the MANY things that happened this past week at Disney.
My son threatened to slap a lady in the face because she was "taking a picture of him". The lady (more patient and understanding than most are) said "Sweety, Im not taking a picture of you; Im taking it of the countries". My son screamed at her "Yes you are! Liar! etc etc"
He is uncontrollable. We tried meds once. They caused so MANY health problems. Gorging, excessive weight gain, kidney failure, depression, paranoia, and ticks are among a few of them. I really dont want to go the meds route again. I did that. It sucked. It took us 4 months to get him OFF the darn things. He did a 180 improvement upon removal. The rage and anger is only within the last year or so, but it seems to get worse and worse. His paranoia is getting much worse as well. He also throws fits about things that he misunderstands. He hears a word, or part of a sentence, and assumes his version of what was said, and blows up over it.
He ruined our whole trip. We fought each other all week. My wife and I got into a nice little fight, and split up for a few hours to cool down. Understand, my wife is my high school sweetheart and weve been married faithfully for 14 years. We rarely EVER fight. We get along so well. Stress can do amazing things to people.
The park:
The crowds were thick, the humidity was a bit high, and it was hot. The quality of the crowds wasnt the usual either. The food and wine festival brought hordes of roudy people laughing loudly and spilling beer. The stench of beer and cigarette smoke was far worse than I have EVER experienced at WDW. There were SO many people smoking everywhere they went, reguardless. My son hates smoke, and this angered him, (and the rest of us as well) even more.
All this led to more frustration.
On one trip several years ago (Ive mentioned this before) my son kicked my wife in the shin till she was bleeding. (He was 6 at the time, and they were in the ladies room. Hes a BIG boy, and she's not that strong. She has a hard time controlling him. This trip was worse.
Now, I try not to end with all negativity, so I'll throw in some happiness.
1) Were home!
2) Its over!
3) We DID have lots of fun as well. We really liked the fun at MNSSHP. The crowds were bad, but the fun was everywhere. I wouldnt do it again, just because it was SOOOOOOOOOO crowded, but it was a VERY fun experience.
4) Boma was AWESOME! (Though my son refused to eat ANYTHING but sweets, and got diarrhea and had a VERY BAD, catergory 10 accident that ruined every stitch of clothes he was wearing, and he stank up the whole bus, and ruined our plans of doing MK that night... And I had to buy him new (EXPENSIVE!!!) clothes at MK, and had to clean up the stall he... well. you get the picture... point made. Too much information!
5) We rode EE 5 times in a row!!! The yeti is COOL!
6) We rode Haunted Mansion 4 times in a row! We spotted a hidden mickey on a staff a ghost in a coffin is holding at the end of the ride on the right side. Definately the single best hidden mickey ive seen yet.
7) we had fun dressing up at MNSSHP. The wife went as Corpse Bride, I as a Pirate, my son as Sora (Kingdom Hearts) and DD as Sleeping B.
8) people seemed much more understanding to my son's condition this trip EVEN THOUGH he acted far worse than usual. The Autistic Buttons from buttonsandmore.com REALLY are a lifesaver!!! Dont even TRY to say its wrong to label them till youve lived a day in MY shoes with a hateful child.
Tomorrow we are planning to try to cancel our annual passes. It was THAT bad. We bought them last week. I hope maybe they will understand. Were not going ANYWHERE till he's under control. I expect him to make us miserable from time to time, but its not fair to others when he makes them miserable too. Its also very embarassing.
So why did I post this? Desperation. "No man is an Island." I need help with him. Any suggestions from those who even VAGUELY KNOW WHAT ITS LIKE are appreciated. Please dont flame me. Ive been through enough. I came here for FRIENDLY advice and maybe some pixie dust.

 

[Selket]

I have no advice (my children are not autistic but I do have a 4 year old and they love to imitate!).

I hope someone can suggest some directions to turn and resources to help as I can tell how frustrated you are with your son's behaviour and how it affects the entire family. Much pixie dust coming your way.

 

[SelfEmployedDebtFree]

OK, so if you got this far, your either REALLY BORED, or you are actually concerned.
I'll add this. My son and daughter fight SO much. He calls her names like stupid and dumb, and she (shes quite smart) finds ways to "provoke and annoy" him. He hits her. She kicks him, he hits her. She screams with a voice that can pierce an eardrum, she smacks him, he hits her. He makes stupid noises to annoy her, she kicks him. He hits her.
Repeat this scenerio about 500 times on the trip down, and 750 times on the trip back.
We brought his GameGear with his favorite games and a DVD player and several of their favorite movies. They would rather fight.
Its hard to drive when theres a full fledged brawl going on in the back seat.

We pull over, I spank him, he hits me, we fight. Its a vicious cycle.

Does ANYONE understand this??? Any advice??? Ive probably already tried it... but Im "all-ears" for ideas.

 

[PaMom001]

I've worked with special needs kids off & on for twelve years. I'm not an expert and won't portray myself as one. At the beginning of the year(2006) I became employed by a local school district(as a life skills aide) and worked with a child who moved last week. Today I started in another school within the district. It is an autistic support room. There is a 8 year old who is a handful. He sounds like he'll become like your son.

I know that you don't want to do medication again, can't blame you since you had a bad experience. Have you tried looking into a boarding school for kids with special needs? Or even some sort of intensive hospital type program? I can only imagine the costs(highly prohibitive).

Good luck. I hope that someone on here can lend a hand.

 

[vhoffman]

Hmmm.................I have no real advice to offer, except that they sound somewhat like my kids. I hate to sound "preachy" to you, and I don't mean to come across as a know-it-all (who is? ), but my kids have acted the way you describe. Once on a car trip they fought for almost an hour over some write-boards I had bought them. I bought them special for the trip. They were the travel type, with a cushion to sit on your lap. I ordered them special and thought they would be a nice treat and help pass the time. Although each kids had the exact same board, they fought constantly over them, actually hitting each other with them at one point. I was so frustrated I finally pulled over, opened the door, took the boards away, and threw them in the nearest trash. I didn't say a word, just did it. They looked so astonished! They actually settled down and behaved the rest of the trip. I've found with my two the less stuff they have the better behaved they are. Perhaps overstimulation?

Kids fight. Its just their nature. Especially when you don't want them to. They shouldn't but they do. They also grow up, go through phases, and turn out to be decent human beings, despite your worries to the contrary. I don't mean I've never been frustrated, believe me, I have. I just mean that you're not the only one who's kids aren't perfect. Also, don't focus too much on his autism diagnosis. I'm finding its becoming another catch-all for any misbehavior, kind of like ADHD. Some suggested my ds had autism, along with ADHD. Please, I'm not belittling these diagnoses. I realize many people struggle with them. I just think they're misapplied. Maybe he's just a brat! All kids are brats at times. I wouldn't use that hammer to nail every loose nail. Realize people are more multi -faceted than just a diagnosis.

I'm frustrated with the sweets thing, too. All kids go for sweets, the classic picture of the kid with his hand caught in the cookie jar comes to mind. But some kids crave them more than others. I've found if I insist ds eat some protein+fat combination at every meal he doesn't crave sweets so much. Probably smoothes out his blood sugar.

I don't have any real advice to give, other than "been-there-done-that". Believe me, your child is probably much more "normal" than you realize. Try not to over diagnosis every misbehavior. None of us is perfect. I'm sure he's a fine boy and will turn out just right. It sounds like your Disney trip had a lot going against it--the crowds, heat, etc. Not all trips are winners. Just focus on the next trip. Good luck!

 

[TEWINOHIO]

Hey guy. Sorry to hear about the trip. I don't know what advice I could offer other than...I empathize with you. Especially being a father of an autistic son. I can not say that my son's behavioral problem are near as bad. Although I can say he may have been close at one point of time, but now that he is 11, his behavior has improved dramatically. I can also tell you that as far as the fighting between your DD and DS...that probably if more siblings fighting. I have raised four kids. Two to adult age..they fight, they argue when they are that age. My two younger ones do too at times..but that too has become less frequent.

Men deal with things differently. If you want to chat about it as two fathers of autistic kids feel free to PM me.

Hang in there.

 

[mlwear]

I am sincerely concerned.
I certainly don't know it all and believe no one does. All ASD kids are different.
It seems that the Disney trip isn't an isolated episode of aggressive behaviors (I don't think that defines it perfectly, but I think it will suffice).
We have experienced times of great aggression, frustration and total tantrums.
If you are truly looking for advice and not just needing to vent (which is OK, too, in my book), IMO I would get a Functional Behavioral Assessment. You can probably ask for this through the school as a formal evaluation. It will determine why the behavior occurs and what positive behavioral supports should be used to decrease the behavior. I don't claim to be an expert on FBA's and welcome anyone to explain it better. We are just starting a new FBA for my son. It is quite a lot of work, but if it can improve the quality of life for your family, it will be worth it. You could also seek help of a psychologist who specializes in working with people with autism. He/she can evaluate and conduct "family therapy". This is a concern for the entire family and it seems that everyone could benefit from some intervention.
Best wishes to you.

 

[disneygal66]

I am so sorry that your trip was awful! I have a DS 6 who is autistic and he has gotten worse since school started. He is in a typical KDG class and I think it is too much for him. We go to therapy once a week and our therapist just referred us to "Extensive In-Home Therapy" which can be up to 5 hours a week. I am willing to try anything. I am assuming that he is in therapy too? Maybe your therapist can help. I would definitely try something more intense. I wish I could wave a wand and make things better for you but all I can do is offer my support and lots of

 

[SelfEmployedDebtFree]

IMO I would get a Functional Behavioral Analysis.

Hes in autistic classes. Hes currently seeing a behavioural therapist. Hes seen probably 30 different doctors in his life. Hes had numerous tests ran by many of the leading names in the area. He has a strange combination of symptoms.
We are planning to get him re-evaluated very soon. I'll look into that.
Thanks for all the replys.

 

[puglove]

I know you're looking for advice and I don't have any, but I just wanted to say that I'm sorry you had a tough time on your trip. Your post certainly really opened my eyes because I don't know a lot about autism (at least not about the behavioral part). Next time I see a kid who's out of control, I will not make any assumptions.

 

[Ali]

I'm a SPED Pre-K teacher with an AS DS5 and I wanted to Just offer some advice someone in my family uses for her very large and strong and loud and smart and commenting on the world AS 14 year old - he would rage out of control and there were no answers on how to get him back into a semi-state of calm. They have started using those break and shake glow sticks - when he is verging on losing control (or has lost control) he is told to get a glow stick or someone hands him a glow stick - then he is told to break it and shake it and look at it while he is telling himself "I am safe and it is ok I will feel better soon" (his mom says it for him a few times first - then he is told to take a break from the area he was in just in case he is stuck on something environmental. He goes for a lot of walks to calm himself - he is not a runner. He is getting the hang of it and it does bring down the rage because he is hyperfocusing on the glow stick and out of the other stuff in his head.
This child is now in a special school for Aspergers and doing much better with intensive social skills and behavioral training.

If it was my car and these 2 children I would have one child in the front and one child in the back to keep the bickering down as much as possible. THink your daughter would like 10 hours of one on one time with Mom or Dad? I do.

Good luck and remember to keep beathing and keep yourself above water because you can't help unless you are ok.

 

[ducklite]

Have you tried family counseling? It will give you all the skills you need to cope with his outbursts, and perhaps give him ways to cope with the world.

Also, don't discount meds. There are a huge range of drugs out there, and not all of them work for everyone. It took several YEARS to get the right combo for our son, and then when he hit puberty we had to start over. He's now almost 21 and more stable than he's ever been with a three drug "cocktail" that include an antidepressant, a mood stabalizer, and an anti-psychotrophic. All three are very "safe" with low chances of side effects, and he's comfortable taking all of them.

You MUST do soemthing, because even with a diagnosis, as he gets older if he harms someone--which by the sound of it this is going to--not might--happen, the law will become involved and he might be removed to a secure facility. I'm not trying to be nasty, just realistic.

Good luck.

Anne

 

[Chuck S]

I agree with Ducklite, while the meds you had your child on may not have been the right combination or dosage for the individual, do NOT discount the use of them entirely. Given the situations you described, I would definately try new combinations and dosages. It can take a while to tweak the formula for him. I also agree witht he poster that suggested family counseling, this may better equip you emotionally to deal with the situations and outbursts.

 

[1stluvispooh]

I am so sorry that you had a horrible vacation. As a mother with a AS DD 6 I know how hard it can be just to take a AS kid to the grocery store. You need to be commended for make the leap and actually taking a vacation. (I am related to someone with NT kids who doesn't take vacations because "there too hard" ) Any way have you tried changing his diet. My DD was much more distructive and autistic like before we found out she was allergic to milk. I first took her off of gultien and milk together because I read that some kids behave better once they were off. Long story but I wound up taking her to an Allergist and found out that she was physicaly allergic to casien (milk). It made such a huge difference. The nurse at her GP notice emmidatly and asked if this was the same child. She is no longer according to the prick test allergic to milk but she does get a stomach ache and diarhea if she has some so we just keep her as dairy free as possible. As for the fighting. They are kids there going to fight but boy do I know what you are talking about! We are starting to think about a new car for me and eventhough DH and I would rather get a way with as small of a car as possible for better gas milage ect. I am seriously thinking about getting something with a 3rd row seat so I can seperate them. DD has been know to hit DS all the way home form the grandpartent which is 1.5 hour away. So hope things get better for you and know that you are not alone

 

[LindaBabe]

May peace be with you and also your household. You are not alone.

As the grandmother of a child with Bi-polar disorder, I second Ducklite's comments. I'm a believer in a sharp swat if necessary, but since it's not working in this case - you need a new strategy. Keep trying doctors, meds, methods, consequences, anything, everything until you find a combination that works. Your lives depend on it. I hope you find one SOON!

 

[disney-super-mom]

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.

 

[katymae]

Totally living with this right now with dd7...we're just barely hanging in there. So all I have to offer is this:

 

[Gillian]

Wow. I hope the DISers can help you. You and your wife are dealing with so much right now!

From the DIS, and I guess just from experience with my own kids, I've learned not to pay much attention to other kids temper tantrums (or whatever). So when I'm walking DS out of school and he's telling me he hates me, I hope you'll ignore it as well. Same if DD throws herself onto the post office floor and refuses to get up while I'm carrying a heavy package.

Glad the buttons are helping you!

 

[spiceycat]

no advice - just good luck and my prayers are with you.

do you have anyone in your family or your wife's family who could kept your children. If you do - I think you and your wife need some adult only WDW time. If you can manage it.

so sorry this is happening.

 

[Forevryoung]

I know meds aren't for everyone and side effects of many meds can be pure evil but please don't discount them for your son.

I am personally on psych meds (antidepressant, antipsychotic and a mood stabilizer) and they WORK. It's taken me 17 different meds over the past 6 years and I am still not stable but I am better then I am without them. If you have any questions about meds, side effects, or anything, feel free to ask... each med is different for everyone but when I am on the right combination and my head is clear, the difference is amazing.