Autism Self-injurious behavior

[WendyisDarling]

If anyone has advice or been in similar situation, I'm hoping you reply. Our family visited Disney at least annually for many years, but had to take a break from vacationing because my now 18 year old son has episodes of self-injurious behavior (SIB). It has been a challenge for many years but now he's older and stronger. He hits his head, arms, legs with tremendous force. He most often has bruises and swelling. (Think the movie Fight Club) Yes, he has therapists and takes medication. He has PRN meds if he cannot calm and needs sedated as he is a true danger to himself. He is not aggressive to others but it is troubling and scary to watch. He has a helmet and padded gloves we put on him if an episode begins. Sometimes we can tell he is about to start other times it is sudden. There are some identified antecedents, but some unknown. Along with severe autism he also has an intellectual disability, communication issues and anxiety/OCD. It's not really possible to reason with him.

His SIB has greatly decreased over the past year. He has periods of 2-3 weeks with no issues. Then there are times it is most of the day for several days in a row.

Disney and other amusement parks are places of enjoyment for him. So we are hoping for a stretch of good days and we decided to try it. DS is excited. We leave in a few weeks.

I'm getting nervous though. We know there is a possibility we will need to end the trip early (the idea of forfeiting so much money is sickening, but these things can happen when your child has a disability).

Anyone else go through this? I have a lot of behavior and sensory strategies.
I've been able to ignore reactions from strangers for quite some time, but the few times he has had SIB episodes in public are just awful.

We've always alerted flight crew so they aren't alarmed if it happens. Never so far...he likes planes. I don't know if I should mention to resort management - just in case they get a call. Would they even make note? So many scenarios going through my head right now. Praying he does well.

Anyone tempted to tell us we should stay home--too late. Plus, we've decided we have been prisoners to this for too long. We will leave if needed.

Suggestions? I guess this was more of a venting, ramble...
Prayers, please.

 

[DisneyOma]

Does it take more than one adult to handle him when he starts SIB? How many adults are in your group? Will he be willing to use a wheelchair so that he can be more easily moved to a less stressful area if he starts to become agitated?

For starters, I'd suggest having your own vehicle there if you can afford it. That way a lot of time staying in line for a bus can be avoided.

 

[cornflkgrl]

I don't have any advice about SIB. I just wanted to say I hope your trip goes well and he (and the family) gets as much enjoyment as possible.

 

[gap2368]

I would try a wheel chair so that he can have some space

Take breaks

Take things slow if need be

I think you could use the DAS

not sure I would tell hotel maniger as there might be too many and they change

Having your own car should help

I would bring his helmet and gloves in case he needs them and any other sensory things he has

Have a great trip

 

[HarleenQ]

We have a child (10) on the spectrum with SIB. It's not to this magnitude, and unfortunately has recently progressed since our last trip. She will pick her fingers until they're a bloody mess (has no nail left) and pull out her eyebrows and eyelashes when stressed, and that's exacerbated with her OCD and anxiety disorders. We definitely get some looks, just for different reasons.

I wouldn't bother alerting the hotel - they're aware and good with dealing with this kind of stuff. I'd get a DAS to help with time in lines.

Honestly, I'd really just plan to take it slow and go at his pace. Adding in break days for us was really beneficial to avoiding meltdowns and our DD getting overwhelmed as the trip went on. It really sounds like you're aware of how to handle the issues that arise, what his triggers are, etc. You're prepared to leave if needed and I really think that's a big part of it all in truth. Being willing to do what's best for him. I really think you'll be fine and you'll get some great memories

I don't know where you're staying, but if it's not on the monorail line I'd also recommend a rental vehicle. It's a game changer for us. Particularly if he may have an episode on a shoulder to shoulder bus where someone else could get hurt.

 

[WendyisDarling]

Thanks for the replies. We've used DAS on past. Sometimes he could wait in lines fine and other times we would use the line wait assistance.
I never considered a wheelchair. He has no mobility issues but that would create a good buffer. Good tip. I might give it a trial run at a nearby location. I wouldn't want to put him in a completely unfamiliar situation there. I didn't think about the bus. We are splitting our stay between AKL and Poly. Originally were staying Poly duration as this is "his place"--the hotel with volcano pool. Then out of the blue he wants to stay AKL. We love this resort, as well, so ok. Planned to wait on MK until Poly stay. Still the bus rides from AKL can be quite crowded and seem long. We planned to use a car service from the airport. Never thought about the problems of the bus. Even if no one would inadvertently get hurt, I hate when kids see him self-injure. He can't help it and so many are taught tolerance, but I'm sure it's scary for them.
Just DH and me so we can handle him OK. If he's so bad he must be sedated, it can be hard to maneuver him.
I appreciate the insight.

 

[momimouse27]

Wendy, I'll be praying for you and for your son to have a beautiful, magical time! My son is high functioning ASD, and doesn't have SIB but he is very sensory defensive. He hates the smell and feel of soap and anti bacterial cleanser(fun, right??). He is 13 and lately he's been going through hormonal changes and teen stuff and we get meltdowns where its more like crying and "I hate my life" kind of stuff. When he gets over it, which is usually fairly quickly, he is okay.

I seem to have read somewhere that you can get a large adult type stroller for disabilities. I had looked into one because my son decided he liked to run off by himself because "he's a teen now" I decided against it, thinking it might end up triggering behavior. I wish I could remember where I found that.

I am so glad you're deciding to go. We have had meltdowns that made me a crying mess and tempted me to stay indoors forever. They are much fewer now and farther in between but we had quite the doozy last week in Olive Garden. I wanted to hide under the table. Instead, I held my head up, got him over it, and we finished our meal, deciding to ignore the stares. It's something you just have to learn to do.

I so hope you have a wonderful time, and your son too. I will have you in my prayers.

 

[SueM in MN]

Wendy, I'll be praying for you and for your son to have a beautiful, magical time! My son is high functioning ASD, and doesn't have SIB but he is very sensory defensive. He hates the smell and feel of soap and anti bacterial cleanser(fun, right??). He is 13 and lately he's been going through hormonal changes and teen stuff and we get meltdowns where its more like crying and "I hate my life" kind of stuff. When he gets over it, which is usually fairly quickly, he is okay.

I seem to have read somewhere that you can get a large adult type stroller for disabilities. I had looked into one because my son decided he liked to run off by himself because "he's a teen now" I decided against it, thinking it might end up triggering behavior. I wish I could remember where I found that.

I am so glad you're deciding to go. We have had meltdowns that made me a crying mess and tempted me to stay indoors forever. They are much fewer now and farther in between but we had quite the doozy last week in Olive Garden. I wanted to hide under the table. Instead, I held my head up, got him over it, and we finished our meal, deciding to ignore the stares. It's something you just have to learn to do.

I so hope you have a wonderful time, and your son too. I will have you in my prayers.

Follow the link in my signature or look near the top of this board for the disABILITIES FAQs thread.
Post 2 of that thread has information and weblinks for places that rent wheelchairs and strollers - including special needs strollers (scroll down toward the end of post 2).
Even though your child might not have mobility issues, a stroller or wheelchair can provide some separation from other people and a 'safe haven'.



Some people have been able to get their insurance to purchase a special needs stroller for sensory needs or if their child elopes/escapes.

 

[tcufrog]

i wouldn't recommend a split stay because that will add extra work. Staying at the same resort the whole time will also allow you to create a semblance of a routine.

 

[Shanti]

If anyone has advice or been in similar situation, I'm hoping you reply. Our family visited Disney at least annually for many years, but had to take a break from vacationing because my now 18 year old son has episodes of self-injurious behavior (SIB). It has been a challenge for many years but now he's older and stronger. He hits his head, arms, legs with tremendous force. He most often has bruises and swelling. (Think the movie Fight Club) Yes, he has therapists and takes medication. He has PRN meds if he cannot calm and needs sedated as he is a true danger to himself. He is not aggressive to others but it is troubling and scary to watch. He has a helmet and padded gloves we put on him if an episode begins. Sometimes we can tell he is about to start other times it is sudden. There are some identified antecedents, but some unknown. Along with severe autism he also has an intellectual disability, communication issues and anxiety/OCD. It's not really possible to reason with him.

His SIB has greatly decreased over the past year. He has periods of 2-3 weeks with no issues. Then there are times it is most of the day for several days in a row.

Disney and other amusement parks are places of enjoyment for him. So we are hoping for a stretch of good days and we decided to try it. DS is excited. We leave in a few weeks.

I'm getting nervous though. We know there is a possibility we will need to end the trip early (the idea of forfeiting so much money is sickening, but these things can happen when your child has a disability).

Anyone else go through this? I have a lot of behavior and sensory strategies.
I've been able to ignore reactions from strangers for quite some time, but the few times he has had SIB episodes in public are just awful.

We've always alerted flight crew so they aren't alarmed if it happens. Never so far...he likes planes. I don't know if I should mention to resort management - just in case they get a call. Would they even make note? So many scenarios going through my head right now. Praying he does well.

Anyone tempted to tell us we should stay home--too late. Plus, we've decided we have been prisoners to this for too long. We will leave if needed.

Suggestions? I guess this was more of a venting, ramble...
Prayers, please.

My son is much younger (11), but used to have those kinds of outbursts (as well as other types of outbursts) occasionally. We have successfully used biomedical as well as therapeutic interventions with him to help raise his level of functioning over the years.

GABA is a calming supplement recommended by our pediatric neurologist that is dissolved under the tongue. My son takes it twice a day. No side effects. You can get it over the counter.

The doctor has also recommended that our son stay on a gluten-free diet, as we pilot tested him on it, and his behavior would worsen whenever we'd try taking him off the diet. I know (believe me, after years with this, I know) that special diets can be a pain to implement, but the gluten-free diet has really helped our son.

Vayarin is a prescription-purity and strength omega, that helps reduce add/adhd symptoms (which can include aggression). Our pediatric neurologist prescribes this for our son. No side effects. You'll need a prescription for this.

You mention your use of sensory strategies. Have you tried daily brushing, as demonstrated by an occupational therapist?

Also, our son's occupational therapist used to have our son listen to specifically-chosen "therapeutic listening" cds, which takes 15-30 minutes twice a day with special headphones. Apparently they work on some sensory integration issues. These also seemed to help. You can only buy or rent these cd's with therapist approval, due to their therapeutic component.

We never tried biofeedback therapy, so I can't vouch for it, but I've heard that it can help some people. Maybe give that a try if all else fails?

May God bless you and your son. I know it can be hard. I had to withdraw my son from a school once due to behavior issues, but he's since moved past having behavior issues at school. Improvement is possible if you keep trying. Stay strong.

 

[Cloudy]

I have a very similar situation. I have a 20 year old nonverbal autistic son with SIB (head banging). He can do some major damage to walls, cars, refrigerators, etc. He can speak a little and during February-March of this year there were a lot of Disney ads on TV. He kept repeating Disney, beach, sunny, hot. We have taken Disney/Clearwater trip previously but never since his SIB has gotten worse. So we decided on a trip at the beginning of May (before crowds got heavy).

As the trip got closer his head banging became worse and worse. During the month of April he was severely banging his head daily. DH and I were in tears thinking this might be the worst mistake ever but DS knew we were going and the only thing was to power through.

Well the trip went really well. A few screams when the plane was landing, but DS had on noise cancelling earphones, so we got a look or two at first but then people just ignored him (sat in the rear of the plane like always). No head banging at all on vacation. A few outbursts here and there but we were most worried about property damage. Happy to discover most walls in Florida were made of wood or stucco and not easily damaged. Maybe it was Disney Magic??

On a bad note, DS had a grand mal seizure at Epcot. His second ever with the first about a year prior. Disney CMs, security, EMTs were all great. DS is doing well. Other than 3 hours in the ER and cancelling an ADR the rest of the trip went fine.

Best fortune on your trip. Just wanted you to know you were not the only one out there. Hugs.

 

[TheRustyScupper]

1) I have not seen this in the parks, but have seen it in the hotel.
2) In one case I remember, it "appeared" the parent couldn't stop the actions.
3) Another CM called 911, and the Paramedics and Security physically subdued the child.
4) The point is
. . . to protect that individual
. . . to prevent injury to others who might become involved
. . . to halt other guests from witnessing the unpleasant incident
5) The family was permitted to remain at the resort, as I did see them on succeeding days. *

* We were instructed to not mention the incident to the family, so we avoided any talk of it when we saw them.

 

[momimouse27]

Thanks, Sue! I want to go reread those FAQs as well.

 

[FortForever]

Anyone tempted to tell us we should stay home--too late. Plus, we've decided we have been prisoners to this for too long. We will leave if needed.
Prayers, please.

God Bless you and your family! You are warriors. I'll be praying for you all to have a wonderful, low stress trip. My only suggestion would be a wheelchair for personal space. Have fun and please come back and let us know how it went.

 

[Cloudy]

1) I have not seen this in the parks, but have seen it in the hotel.
2) In one case I remember, it "appeared" the parent couldn't stop the actions.
3) Another CM called 911, and the Paramedics and Security physically subdued the child.
4) The point is
. . . to protect that individual
. . . to prevent injury to others who might become involved
. . . to halt other guests from witnessing the unpleasant incident
5) The family was permitted to remain at the resort, as I did see them on succeeding days. *

* We were instructed to not mention the incident to the family, so we avoided any talk of it when we saw them.

This has never been my experience with my autistic son's outbursts. Sometimes a bystander will ask if I need help but no one has ever called 911. Even after my son's seizure at Epcot, CM's called Disney EMT's but the squad was not called until they asked me if I wanted transport to the ER, because not all seizures need medical treatment.

And I hope #4 "to halt other guests from witnessing the unpleasant incident" was really meant to say "to protect the privacy and dignity of the individual".

 

[TheRustyScupper]

no one has ever called 911.

1) CM's do anything and everything to protect guests.
2) At least we are supposed to do so.
3) I would not hesitate to call WDW's 911.

 

[cinderwannabe]

Hi. I would recommend that you speak with one of your son's therapists about writing and implementing a "social story". Then you can read the story to him and take him out to a park or a mall and practice what may happen if he starts to meltdown. If you have never used a wheelchair it may cause his behaviors to increase if you first introduce it during a meltdown at an unfamiliar location. Social stories are great tools to explain new situations and increase prosocial behaviors. Good luck! I see more and more children with disabilities out and about and I think it is wonderful!

 

[DisneyOma]

And I hope #4 "to halt other guests from witnessing the unpleasant incident" was really meant to say "to protect the privacy and dignity of the individual".

I would expect it was meant to do both.

 

[Cloudy]

1) CM's do anything and everything to protect guests.
2) At least we are supposed to do so.
3) I would not hesitate to call WDW's 911.

In my experience, an autistic person having an outburst would not usually need 911 services. Especially for self injurious behaviors that this thread is talking about where the autistic person is injuring himself not others. I would ask family members if they needed assistance before I would automatically call 911.

I would expect it was meant to do both.

Would you also expect a person with a facial deformity to wear a veil? If you do not like what you see, do not look and move on.

 

[TheRustyScupper]

In my experience, an autistic person having an outburst would not usually need 911 services. Especially for self injurious behaviors that this thread is talking about where the autistic person is injuring himself not others. I would ask family members if they needed assistance before I would automatically call 911.

1) This does sound good.
2) But, one never knows until it is usually too late.
3) IN MY OPINION, better to have EMS "roll" and not need them than to not call and make an error.

NOTE: I was a paramedic BEFORE there were such people, so I like to err on the side of precaution. (The paramedic title was not created until 1969, and I was one when Moby Dick was still a minnow and dinosaurs ruled the Earth.)