NEED ADVISE, IDEAS, THOUGHTS, Low muscletone Autistic

[!@#$%]

My 8 year old son is autistic. (asperger's syndrome, O.D.D., paranoia, and a few sensory problems) he has anger and rage issues. He also has what they call "low muscletone", which brings me to this post.... It simply means he cant take long durations of exercise. He can go wide open for a while, but burns out quickly. When we get to the parks, he assumes "WDW mode", which means WALK AS SLOW AS DIRT!!! (Seriously! I mean DRAGGING!!!) No matter how slow we walk, he walks MUCH slower. Every 10 minutes were having to look back and yell for him to keep up. We tried a wheelchair once, but while it was great, we got lots of bad looks when he would be escourted to the front of the line and then BOUNCE up out of the chair and jump all around. (I fully understand the bad looks and comments; Id think the same thing probably.) I dont want to do wheelchairs. Besides, he's overweight a bit, and he needs the exercise. (We all need it!!!)
He wont let us hold hands, because he knows we are trying to hurry him along. (its a mental thing I often think) It just makes things "difficult".
His dragging behind causes a few small problems we have learned to put up with.
1) We all want to hit all the rides, hes keeping us back.
2) We look like ogres always yelling for our son to keep up.
3) When it gets REALLY crowded, its REALLY bad for us. As it gets easier for him to get left behind and lost.
4) If we try simply talking to him about it (nicely) or asking him what we can do to help he gets REALLY mad.
It creates a negative feeling having him walking SOOOO slow when we know he CAN walk fast if he wants to.

Heres the ONLY exception... If he decides he wants to do something or see something he DRAGS us!!! Wide open, all but running. He is ruthless!!!

So most of the time we TRY to let him lead, because if HE leads, we get there QUICKLY, and were the type of family who is excited and likes to take it all in. But sometimes we just cant do that. If we have a dinner reservation, or want to ride one of the MANY rides he dont like, or such.

The only other thing that seems to help is we bought the rubber chains from the pirates of the caribbean ride gift store, and I often wear one end, and he wears the other, and we pretend to be pirates. Sometimes it works. So the chains are a great (yet sneaky) leash.

What would YOU do? Anything you can think of that might help? Be nice please.

 

[tacomaranch]

There are cute backpacks with "leashes" on them so he can wear it and you can have the end on your wrist. We have a retractable dog leash and our DS loves it. He pretends he is out for walk and we have him right next to us.

I can't think of anything else but good luck.

I just wrote a short novel in the rides section to a lady who is mad because people who look fine were going into the handicap line. Talk about $#%@

Have a fun trip! Enjoy and don't worry about what others think or say. It is disney!

 

[LindaDVC]

I don't have a "solution" to suggest yet -- will ponder that

BUT reminded me of a moment at EPCOT quite a few years ago!
A CM mentioned that a characteur show was about to start across from America --my son loved characteurs so while the rest of the family took in some attraction I said to my son -- hurry and we will see the show

Well my hyperactive wild son (who survived his whole life on no sleep , highest dose of ritalin in our county ever , and teachers would ask IF we had considered meds for ADD --ah yeah you only see the medicated hours teacher -- we have NEVER forgotten a dose)

anyway the hyper child decides to walk SLOW and I mean barely put one foot in front of the other slow............... I know he would love the show so I am trying to get him going and I was finally yelling to get moving now! These two young ladies started blasting me about being a terrible mom and that a disney trip is meant to be enjoyed ..........

I didn't respond to them BUT was so annoyed since they didn't know he was acting so ridiculous or that he would love the show. We finally got there after it started and sure enough he loved it-- he begged to see it again. The family hadn't seen it and I was hungry so I went to America for a hamburger so he and the family watched the second showing! I think that is the only time in his life he ever was SLOW (well maybe chores, homework, but not on a gross motor activity! The good news is he started classes this week at the local community college -- so we survived!

Linda

 

[winniethepoohsmom]

If a wheelchair works for you I would go with that and not care what any one thinks. There is other places around disney he can get exercise. The resorts are quite large you can take a walk around there or go to a waterpark one day and do some walking around there, you can go to downtown disney. Our DS is autistic and has epilepsy and also walks slowly. We take mid-day breaks to give him some down time and go back to the parks after eating if he seems tired either my DH or myself will go back to the hotel and let him rest up. And we usually have a day where I will go into a park with my other DS and let my DH and DS sleep in and then meet up with them later on at the pool and then we all go into the park together. We also start taking walks around the block at home to get everyone including my DS used to walking more than usual. Good Luck!

 

[!@#$%]

Thanks for all the replys. Keep em coming! Some good ideas and stories!

 

[Earstou]

You could just use the wheelchair to walk between the attractions, not use it to wait in lines. Park the wheelchair with the strollers, then stand in line.

 

[mom_of_5]

My son and your son sound alike. Mine is 11, aspergers, rage issuses, not necessarily low muscle tone just some what big and slow, slow , slow. There are 4 younger kids as well so we do walk slow, however he will use a double stroller sometimes to take his rest and we do a lot of the longer sit down rides ie. Small World ( he gets upsets when he is too hot as well). We got a GAC card because we were worried about the anger and axiety kicking in during long waits and this helped tremendously. I am sure we got many dirty looks from people but I would gladly wait in an hour line to have my child not have this disability and it made our whole vacation a success. The less we had to wait in line the less standing he will do and not get as tired. Try it and see. Good luck!

 

[!@#$%]

I'm way ahead of you on that one! We always get the disability card. Its our lifesaver. When he was younger, he had this strange little habit of putting his hand out to rest on things. Usually, at his height at the time, it was a lady's butt cheeks where his hand fell. We got so many good laughs about that. I'd tell him not to do that but he didnt ubderstand. Some of the ladies understood, and got a laugh about it, others of course didnt. When he was younger, he LOVED to roll around on the ground. If he was in line, he'd be all over the ground and peoples' feet. He's long over that stage, now he just pitches little fits. The card usually cuts the wait down to a short enough line to keep him from annoying others.
I also agree with you. As much as I love WDW, I'd never go back if I could swap it for a healthy child!!!

 

[Nik's Mom]

I have an autistic ds, and another ds who shows autistic tendencies (but not diagnosed) with lots of sensory issues. I don't have advice, since our guys have different issues. But I wanted to offer since I know how challenging life can be at times!

 

[!@#$%]

Thanks! we all need all the encouragement we can get!

 

[ericafny]

Hi noticed your post and thought I would chime in. I am an ABA Therapist with an MA in Psychology. I have been working with children and adults with autism/aspergers/pdd and other developmental disabilites for over 2 years now. I have a 'behavioral technique' suggestion that may work. Let me know if you have tried this or what you think. You can also PM me if you want to talk more about this. OK, here goes (I do not know the functioning level of your child but these should work regardless):

Try making an activity schedule each morning and show your son what you will do. Use pictures or words or both (pictures may be fun and fun for you to make!). Use a piece of poster board and some velcro to stick the pictures on. Let your son make the schedule (if he is able to). Every few rides or attractions, stick either a 'break' picture on there or a 'treat/snack/toy' picture. This should keep him motivated (and moving rather swiftly!) from ride to ride so he can get his 'reward' (which he will choose). After he is done with the ride or show, have him move the picture off the board and put it in a zippy baggie or your pocket. I think it will also be fun for him to see what he will be doing and have a reward to look forward to. Let me know what you think of that idea.

It is kind of hard to explain without showing you so if you are confused feel free to ask more questions! Anyone else who wants similar advice I am always available to answer questions.

 

[tacomaranch]

Hi Erica,

Please come to Wyoming, we just lost our summer help and having to use High School kids now. We need good people for our ABA program. Please come.

ABA and the reward system really does work. Our son tested out at 11 months this spring on his speech. He now has over 100 words and 4 word utterances.

ABA works!

 

[!@#$%]

We actually already do this! It really does work!
My wife had a hard time trying to get him to get ready for school, so she made one for getting ready in the morning. He was intrigued by it, and he does it well. He alternates every morning between taking them off the board, and putting them ON the board the next morning. the board is an 8 X 10 laminated sheet of paper with velcroved laminated pictures. She even made a note to write on the sheet HOW the pants go (zipper on front). For some crazy reason he is OBSESSED with wearing EVERYTHING backwards! His socks, his pants, his underwear! (yeah, its kinda comical to see him runnin around the house at night in backwards fruit of the looms.
I never considered that for the trip, but that might just work! We have found that the free DDP really helps too. We can bribe him with snacks he would have gotten anyways (but he dont know he would have gotten them anyways).
Thanks for the input. I'll definately mention that to my wife.

 

[!@#$%]

So do you have any ideas for solutions for Asperger's children who refuse to throw anything away? He keeps stuffing candy wrappers and burrito wrappers under his bed. I can throw the rocks and twigs back out in the yard, and he never notices, and we clean out from under his bed regularly, but if you sell or give away one of his toys (even from babyhood) he wont go to sleep and wont rest till he finds it. Its a real problem, because his room is shrinking! Every year, new toys, and at yardsales they GIVE him toys, but NONE leave!!!

 

[bumpysheep]

So do you have any ideas for solutions for Asperger's children who refuse to throw anything away? He keeps stuffing candy wrappers and burrito wrappers under his bed. I can throw the rocks and twigs back out in the yard, and he never notices, and we clean out from under his bed regularly, but if you sell or give away one of his toys (even from babyhood) he wont go to sleep and wont rest till he finds it. Its a real problem, because his room is shrinking! Every year, new toys, and at yardsales they GIVE him toys, but NONE leave!!!

Rubbermaid containers. This is what we do. I can hoard in the rubbermaid containers and keep them in my closet or under my bed. Every now and then we have a "negotiation" where I toss the contents of the container for something I really want.

 

[ericafny]

Hi Erica,

Please come to Wyoming, we just lost our summer help and having to use High School kids now. We need good people for our ABA program. Please come.

ABA and the reward system really does work. Our son tested out at 11 months this spring on his speech. He now has over 100 words and 4 word utterances.

ABA works!

Ha, I wish I could come to Wyoming and help you! Unfortunately, good ABA help is hard to come by for so many reason I can't possibly lis them all. The state (and federal) govt's need to make stricter laws licensing ABA therapists and they need to make the BCBA (Board Certified Behavior Analyst) certification recognized NATIONALLY.

I am so happy for your son that is really wonderful! Good luck finding ABA help...have you contacted the school district and DEMANDED they give you qualified therapists? Try www.autismtutors.com They have a national listing service for parents and therapists to interact and find eacother. Let me know if you are able to find anyone...

 

[ericafny]

We actually already do this! It really does work!
My wife had a hard time trying to get him to get ready for school, so she made one for getting ready in the morning. He was intrigued by it, and he does it well. He alternates every morning between taking them off the board, and putting them ON the board the next morning. the board is an 8 X 10 laminated sheet of paper with velcroved laminated pictures. She even made a note to write on the sheet HOW the pants go (zipper on front). For some crazy reason he is OBSESSED with wearing EVERYTHING backwards! His socks, his pants, his underwear! (yeah, its kinda comical to see him runnin around the house at night in backwards fruit of the looms.
I never considered that for the trip, but that might just work! We have found that the free DDP really helps too. We can bribe him with snacks he would have gotten anyways (but he dont know he would have gotten them anyways).
Thanks for the input. I'll definately mention that to my wife.

No problem, I hope it works at WDW! I am glad you knew what I was talking about, it is so difficult to explain I thought I would confuse the heck out of you

 

[ericafny]

So do you have any ideas for solutions for Asperger's children who refuse to throw anything away? He keeps stuffing candy wrappers and burrito wrappers under his bed. I can throw the rocks and twigs back out in the yard, and he never notices, and we clean out from under his bed regularly, but if you sell or give away one of his toys (even from babyhood) he wont go to sleep and wont rest till he finds it. Its a real problem, because his room is shrinking! Every year, new toys, and at yardsales they GIVE him toys, but NONE leave!!!

Hmm...I would have to ponder this one more...

Just off the top of my head I would try this: Get a token board (reward system) and ask him to pick one thing from the store he REALLY REALLY wants. Then, every time you have to throw something away (like an old toy) and he doesn't get upset about it, he gets a token. After 10 tokens he gets his reward from the store...see if he understands this system and if it works for him. Token reward systems are EXCELLENT and if you don't already use them you should try to start. It seems like he has trouble with change, and if you distract him with the big huge reward he will get it may help to ease the anxiety when you have to throw an old toy away. Let me know if this is a good solution for you