DS: Autistic older child --UPDATE POST #61

[WendyisDarling]

I sure remember the days of DS having major meltdowns and the judgmental looks and sometimes comments from others around.
My skin grew thick and I learned to ignore them.

DS is now 11 and I'm growing more concerned about his behavior for our upcoming trip. He has a behavioral therapist so we are trying lots of things to modify. He definitely wants to go to WDW, the behaviors are just everyday behaviors and get even worse when he is out of his element.

I don't know if anyone here can provide specific help, but even a "I know what you mean" may calm me.

When DS was younger, the things he did caused others to take notice, now that he is older it's different. I'm not trying to minimize what anyone goes through with young children. I know it can be extremely difficult and even impossible.

I worry that he/we are going to get into real trouble. Some things he says so bizarre and offensive. He has an issue with volume now, too, so he shouts everything. One example, he has now said this so often it is a stim "I'm going to pull Mickey Mouse's pants down". How terrible it would be for a young child to hear that. What will their parents say to me? I couldn't really blame them for being upset. We are working so hard to get him to stop saying these things. Rationalizing doesn't work. It has to be behavior modification. That's just the tip of the iceburg. I'm nervous of what he will say at the airport. I am tempted to put a note on his shirt "autistic, communicates inapporpriately"--or something. He says a lot of things like this some much worse.

Then, there's the physical aspect. Now that he is 11 it is much more serious (again, the case for my son--for others it will be different). He bangs his head with great force and it is scary to see. This is sensory. He is aggressive with me, no one else. Also scary for others to watch. It looks like he is attacking me and frankly he is -- he just isn't expressing what he needs. (Yes, we are working on it.) When a bigger child hops and flaps around it causes a stir. He'll scream for what seems like no reason. All of things are sensory related.

We have always tried to be very considerate of those around us. I've had many restaurant meals boxed up to go and sat in the car with my son while others finished. We leave stores when he "needs a break". Etc. We'll do that this trip, but it is very hard to anticipate the behavior.

I did threaten to cancel the trip. But, that doesn't improve the situation. It only upsets him because he loves WDW. I'm hoping his behaviors calm while there as has been the case during past trips. I have a short BD trip planned for him this fall but that will very much depend upon how it goes next month.

My son isn't going to physically harm anyone else. He is simply unpleasant to be around if you don't know what to expect. As he has aged, his disability is less "invisible". He definitely has a way about him that is obviously not typical. His "look" or behaviors do not keep us from taking him anywhere public around here. We just deal with whatever we get. (I do, a little harder for DH and older DS).

I am rambling now. I hope I am not judged here. I am concerned about judgment from the general public at WDW.

Anyone with older kids/adults with cognitive impairment or developmental delays that face these issues? Please tell me I am not alone.

 

[carrollchristoph]

You are not alone!!!!! Hopefully you will get dozens of these posts! We've all been there!

It's not easy having an autistic child, and Lord knows we all have our bad days! Hang in there!!! And try to remember the wonderful things about your son! Also, there are lots of parent support groups around. I'm sure there's one near you (try googling "autism" "parent" and your state). Or try your school's PTO (some have special ed PTOs). Consider looking into these so that you have someone to talk to!

 

[WendyisDarling]

You are not alone!!!!! Hopefully you will get dozens of these posts! We've all been there!

It's not easy having an autistic child, and Lord knows we all have our bad days! Hang in there!!! And try to remember the wonderful things about your son! Also, there are lots of parent support groups around. I'm sure there's one near you (try googling "autism" "parent" and your state). Or try your school's PTO (some have special ed PTOs). Consider looking into these so that you have someone to talk to!

Thanks. It is just good to be able to not have to sugar coat things by posting, KWIM?

But, I do want to be clear that I do cherish and love my son and see many wonderful attributes. He can be very loving, funny, generous, considerate...He is a very special boy. He is truly well liked by many.

It's just these behviors that are getting worse are such a big concern and weigh heavily upon me especially as I think about our upcoming trip.

 

[carrollchristoph]

I know what you mean! And I didn't mean to imply that you don't love and cherish your son! It is good to vent sometimes in a forum where others can appreciate how hard it is for a parent. Fortunately, I think Disney is great for kids with "issues", but getting there can be hard!

Undiagnosed anxiety can be a problem with some older children. I hate to bring up medications, with all their potential problems and since we've avoided that so far with my 10 year old, but have you thought about any medications? Some parents swear by them.

 

[WendyisDarling]

Yes, DS is on medication. Luckily, if he becomes very agitated he is allowed an additional dose.

You are definitely right about the anxiety issues. This has been a condition we have wrestled with since diagnosis.

One teacher thinks the onset of puberty is triggering the increase in maladaptive behaviors. He's 11, but I guess the hormones start doing their thing around this time.

I just hope ppl don't think we shouldn't have brought him to WDW. (wonder where he gets his anxiety issues? ) He loves being there and is so happy. I'm so hoping behaviors will decrease while we are there. We really do our best to not let him interfere with the experiences of others. The shouting and unusual comments are very hard to control, though.

 

[clanmcculloch]

My ASD daughter is also 11. Like your son, it's not as obvious as it used to be when first looking at her that she is on the spectrum. This of course makes it so much more shocking when the meltdowns suddenly occur. And, as much as WDW is so wonderfully accomodating to our kids, trips do also seem to result in far more meltdowns just because of being in unfamiliar surroundings and schedules being changes and having SOOOO many people around. I think I've developed a much thicker skin than my husband has. He gets embarrassed and therefore angry at her while I focus on trying to decompress her.

Here's my experience. We try to hit the parks early so there won't be nearly the crowds. We don't set a specific time to leave. I try to watch her closely for early warning signs of meltdown. As soon as I see them, I start discussing our return to the resort. Swimming always calms her down (I think it's sensory; the feeling of the water all over her is wonderful for her; at home I'll stick her in the shower when she's getting upset if it's not warm enough to swim which is quite often in New England) so we spend afternoons swimming. When it gets to be dinner time, if we have an ADR then we head off to dinner, otherwise we eat at the resort. While eating, we all discuss if everybody feels they can handle any more time at a park. Unfortunately for me, it seems to be no most of the time (she's very good at articulating her needs in this sense). We've only seen one fireworks show because of it, and had a major meltdown waiting for the bus afterwards. Sigh. I really want to see fireworks but I know it's just not in the cards. I'm really hoping it'll happen on our next trip though I'm not holding my breath. Some may say we're not really getting our money's worth out of our WDW trips since we really only spend mornings at parks, but the way I look at it is that anywhere else we wouldn't get to even do that much. We do still get to enjoy the rest of the day by the pool and wandering around the resort.

I'm hoping that on our upcoming trip I can convince everybody to leave the park earlier; well before meltdown point so we can rest up and hit a park or two in the evening. I REALLY want to see the parks lit up at night and maybe catch a fireworks show or two.

ETA: It will help you a LOT if you learn to ignore people who give you dirty looks. It's much easier said than done, but it really does become important. They don't live your life. They don't know your struggles. If they choose to judge you then they must just be blessed to not have to deal with these kinds of difficulties and I sincerely hope that they never do because they obviously lack the empathy to be able to handle our special kids. Even though my daughter is much more work than a "typical" kid, I wouldn't trade her for a second because along with her special needs is the biggest heart you can imagine and a mind that never ceases to amaze.

 

[SAGE]

In my experience, puberty is extremely challenging. The worst years were grade 7, 8 and 9. I could not have taken my son to WDW during that time. However that doesn’t mean you shouldn’t.

Working with a behaviour therapist, medications, etc – your definitely on the right track. You are doing the very best and worse case scenario, if this trip doesn’t go smoothly, then you can always try again in a few years. My son also has an older brother – he has politely declined my offers to join us.

Look at my signature…. I’m taking my son every year + on the DCL! Yes, the first time everyone thought I was either very brave or had lost my mind. (it’s just the 2 of us traveling), but he is so good, happy….. there is hope. He's 20 now.

Take care.

 

[WendyisDarling]

In my experience, puberty is extremely challenging. The worst years were grade 7, 8 and 9. I could not have taken my son to WDW during that time. However that doesn’t mean you shouldn’t.

Working with a behaviour therapist, medications, etc – your definitely on the right track. You are doing the very best and worse case scenario, if this trip doesn’t go smoothly, then you can always try again in a few years. My son also has an older brother – he has politely declined my offers to join us.

Look at my signature…. I’m taking my son every year + on the DCL! Yes, the first time everyone thought I was either very brave or had lost my mind. (it’s just the 2 of us traveling), but he is so good, happy….. there is hope. He's 20 now.

Take care.

Hope. That is a great thought and comfort.
You are SO brave! I've temporary thought of DCL and immediately dismissed it.

DS 11 has the mortified older brother. I think that will be a bigger issue this time than in the past. At 14 everything is so embarassing. I feel for him. I remember 14 and this would have been really tough.

clanmcculloch --I hope you get to see the fireworks sometime soon
I know what you mean about the water. True for my son, too. I know it calms many children with autism.

After I posted I thought of a recent event that was so terrible at the time but later you can't help but think, wow! he really did that ---

About a month ago, DS was at the neighborhood pool. For some reason he got this wild hair and hopped out of the pool and took a bite out of a lounging man's newspaper! Thank goodness for forgiving people. The man wasn't upset at all. In fact, I later learned he has a special needs daughter (wouldn't be surprised if DS recognized him from an event, he remembers everyone). Oh please, don't let my son take a bite of someone's newspaper while we are at Disney! (Should I laugh or cry here?)

Thank you for the comments and advice.

 

[Schmeck]

Would your son be able to ride in a stroller? Some families have reported that the stroller is a safe haven for children on the spectrum, and when sensory overload is all around you, a safe haven is definitely needed.

The double strollers that you can rent at WDW are a bit smaller now than before, but there are some links at the top of the disABILITIES page that have info on renting a medical stroller for larger children.

 

[bookwormde]

It looks like you have some time before your trip to prepare so that is good. I would be concerned about the idea of it being a surprise since anxiety still seams to be a major issue for you DS.

There are lots of ASD threads with lots of great ideas and accommodations if you look back through this section. All of us with spectrum children have been where you are know to some extent. With proper preparation WDW is typically a magical place for our children.

I am always a little concerned when I hear a parent say they have a behavioral therapist since there are so few really good ones and the rest just generate massive amounts of anxiety for very little long-term benefit. Hopefully yours is a skills based practitioner and only directly works on individual behavior where they are significantly damaging.

For the volume issue a good pair of OT and speech therapists should be able to make significant progress in that area.

I am assuming that your clinical group has done a full assessment of all the causes of anxiety (sensory, auditory processing, communication, social skill and EF differentials) and have a robust set of accommodations in place and skill development programs to make progress in these areas (since this is supposed to be done before anxiety medications are used). This is always the first priority since the long-term damages from ongoing clinical levels of anxiety can be so significant. Identifying anxiety areas, which may be heightened at WDW, is important so they can be worked on and reinforced accommodations can be used. Also identifying skill sets that will be particularly applicable (and needed) at WDW and having a program to work on them before and during your vacation can be very productive.

We always have a couple of skill sets that we work on during each visit.

Sorry I tend to ramble a little also.

bookwormde

 

[WendyisDarling]

Thanks for letting me free some of my nerves about my son's behaviors and exposing them to such a diverse and large group of people.

We do have an excellent team in place and work on managing his behaviors. He has come along way, but as most we hit some snags.

Just as with every day we will somehow manage

 

[pudge the fish]

I don't have any advice but will gladly give you a and tell you to vent, ramble etc.. away-
we have so many awesome experts here and everyone is helpful and nice

 

[cindy17]

You are SO not alone! I recently came back to these boards because we are cautiously comtemplating a return trip to WDW. I say cautiously because our last trip in 2005 couldn't have been more difficult with our 15 year old ASD son (he was 11 then). We're big disney people. Used to go to the parks every other year, or even every year religiously when the kids were smaller. Back then if there was a problem with our autistic son, we could just scoop him up and remove him from the situation. Obviously, can't do that anymore! The last trip was bad. He had a really bad meltdown in Animal Kingdom, triggered by a kid with a toy that caught my son's eye and it totally escalated from there. We ended up having to be "escorted" on a tram of some sort out of the park. Horrible. Have to say though the CM's who helped us were for the most part, very kind. Then as soon as we were in parking lot, son was totally fine. That's how he is. He can turn on a dime, but when he gets aggravated about something, he can turn very aggressive. We are so afraid he's going to haul off and hit someone's kid. The best had to be in the airport on the way home when he ran through security. We nearly got arrested! If we go this time, I researched a much smaller airport to use, even though it's about an hour farther than Newark, hopefully it will be less hectic. And we're going to fly into Sanford. Heard that's not as crazy as MCO. But again, it's farther, but that's OK. When I read your post, my mouth hung open thinking how similar our stories are. I commend you for being brave enough to go to Disney. I'm not sure if we're there yet. My son is on medication and is great at school and home for the most part. But being in public, especially in crowds is a big fear of ours. I'm sure he feels our apprehension. I'm pretty good at being the "calm one", but my husband, not so much. I try to tell him that his reactions make things worse, but he just doesn't get it. Hang in there! I totally feel what you're going through.

 

[momtoBrandon&Jacob]

I didn't read the other replies, but I wanted to tell you to stop worrying about "what others think". You can't live your life worrying that your son's behavior or outburst will scare a total stranger. There is another thread going on right now about "parenting pet peeves" and it's just sickening. Don't let others sway you or let you question your parenting skills. Do what you feel is right for your son and your family and have a fabulous trip. I know that when my family and I are on vacation we don't pay attention to other parents and kids. We don't care how old your kid is when he/she is in a stroller, we don't care if you use and old mug, we don't care if you pool hop, and we don't care of you use a leash on your kid (get my drift?)

 

[cindy17]

I love your attitude! Honestly I'm also over "what others think". I just wish there were more parents out there like you. I'm totally over the "looks", I just worry if my son got angry and aggressive and hit whoever was in his way. It's happened before and I quickly apologize and move away as quickly as I can. That's all we can do. I just don't want to get my butt hauled off to jail!

 

[Janet Hill]

We never ever take the busses. The lines are very confining as are the busses and if a meltdown does occur there's no escape.

Swimming calms my son too. However, soap and water in the shower do not.

 

[cindy17]

Agree! We gave up on busses long ago. Renting a car is an extra expense, but well worth it to get a quick get-away if needed. Since we've been to Disney many times (and have in our heads that this is hopefully never our last trip), we totally drop all expectations of the "perfect" vacation. You only set yourself up for disappointment. If we get a couple of "magical" moments in the course of 5 days, great! Personally, if I can get through a vacation without ending up in the bathroom in tears, it's a success.

 

[sharadoc]

Hi. Count us in, too! DS just turned 14 and I swear I don't know him anymore. Not only does he get upset or change moods on a dime, we have NO IDEA why. Sometimes I swear a cloud comes over his face, and just doing something like picking up the TV remote, or getting up from the couch sends him into a tailspin, yelling NO and grabbing your arm to sit back down, or put something back, etc.

I'm sure it's puberty and I wouldn't want to sugarcoat our experience. Sounds like most of us have had the same thing and I believe / HOPE that it will calm down.

But we are very lucky in that our DS LOVES Disney World, loves looking through our old photo albums and has always loved his Mickey Mouse and Disney movies. So going to WDW is a wonderful thing for him.

We prepped by going out to restaurants, malls, etc. We talk all the time about "when we go to Disney World, we'll have to wait at a restaurant, wait in a line, etc. etc."

He asked to go back about a week after our January trip. A major reason we planned our August trip. We have used the Disney trip to get good behaviors, like "can't go to Disney World if you don't get a haircut."

My DS likes to stim with his hands, and talks to himself a lot but not loud. We sit in the back of theaters, hoping to not be right behind someone and able to leave if necessary. When he does flip out, we have learned to have him sit down, sometimes right on the floor where he is. I would not hesitate to do that on a bench or the ground at WDW either.

I could care less about what other people think. I love him and want him to have the best time possible. I'm sure you'll have a fine time - just be prepared and you can handle everything that comes your way.

FYI - we are making some matching shirts and I'm putting autism puzzle Mickey Heads on the sleeve to identify us as an ASD family!

 

[disney's daughter]

A few months back, I took my grandchildren to see a Hannah Montana movie. The place was packed...Before the movie started, I noticed a boy who looked to be in his teens, clutching a stuffed animal and walking fast...His mother was trailing behind him...looking very worn out and upset...But, I could tell...she had been through this many times before. Without any exaggeration, I'd say this continued throughout the movie at least twenty times or more...He'd get up out of his seat...clutching his stuffed animal...and run down the aisle. Each time, his mother looked like she was going to cry...I felt so bad...for both of them....The mother/grandmother in me wanted to help them...I wanted to say..."Tell me what to do...Tell me what I can do to help you..." But, I didn't...There was probably nothing I could have done to help either of them....I was afraid she'd tell me to mind my own business...and if I did try to help...(not knowing a thing what to do) I could have scared him and made the situation worse...Instead...I watched them...first the boy running down the aisle...then the mother running after him...all out of breath...over and over...And I felt so helpless...that there was nothing I could do...for either of them...

 

[Candy30]

I didn't read the other replies, but I wanted to tell you to stop worrying about "what others think". You can't live your life worrying that your son's behavior or outburst will scare a total stranger. There is another thread going on right now about "parenting pet peeves" and it's just sickening. Don't let others sway you or let you question your parenting skills. Do what you feel is right for your son and your family and have a fabulous trip. I know that when my family and I are on vacation we don't pay attention to other parents and kids. We don't care how old your kid is when he/she is in a stroller, we don't care if you use and old mug, we don't care if you pool hop, and we don't care of you use a leash on your kid (get my drift?)

This is such good advice!!!! They do not go through 1/4 of what you do with your child and those on the posts probably could not do all that you parents do.

I could care less about what other people think. I love him and want him to have the best time possible. I'm sure you'll have a fine time - just be prepared and you can handle everything that comes your way.

FYI - we are making some matching shirts and I'm putting autism puzzle Mickey Heads on the sleeve to identify us as an ASD family!

Awesome idea!!! I am not a parent of an autistic child but am the Auntie of two beautiful big hearted nephews. One is 3 and the other is 12. The twelve year old has made the same changes as PP have mentioned. He now had a habit of touching women inappropriately. Those of us who know him respond as his therapist says and it does help in redirecting. But someone who is well endowed is a big distraction. Both families have decided not to go to WDW! We were all upset by that decision but it is their decision. I wished I could convince them otherwise. But I do respect that it is their decision. We as a family love and adore both boys and try to help as much as we can but ultimately the every day to day is with the parents. I guess what I want to say is that I RESPECT and LOOK UP to all parents who raise, love and protect your specially beautiful children!!