DS: Autistic older child --UPDATE POST #61

[WendyisDarling]

Thanks to all for sharing their experiences with an older autistic child. I'm sorry to read your stories, but also glad to know others are out there and appreciate the tips.

LOVE the idea of the shirts with the Mickey heads and puzzle pieces. Seriously, you could sell those.

Hadn't thought of renting a car, but will give that careful consideration.

 

[momejay]

I have 2 children with autism. (DD, 15 & DS, 13)

I have endured the stares as my DD screams at me. She sounds like any other teen that is totally embarrassed by their parents, she just does it so the world can hear. She doesn't realize that she shouldn't voice her concerns & opinions so loudly. (This could be over asking her to get a straw or napkins for us or passing the salt. I'm treating her like a slave, you see?)

DS is the problem. He is the one with the extreme meltdowns. He has been known to hit me mostly because he thinks I don't understand him or because his sister is yelling at me & he thinks she needs correcting. In a crowd, he pinches cute girls or tries to checkout their finger nails if they are painted, so I try to keep my girls in front of him & we stay out of major crowds. (He pinches their arms not rear ends)

I am a single mom. My husband left soon after my son was diagnosed. My niece, also 15, helps us on trips to Florida. She holds DD's hand & sits with her on rides. She models appropriate behavior for DD.

If I may make a suggestion. I found that my son was much better behaved if I got a wheelchair for him. (Especially if we are going to be in the park for a long time.) Maybe he gets cranky when his feet hurt? Maybe he never graduated from the stroller to hand holding? It helps, he feels special & I always know where he is.

What child normal or autistic hasn't had a meltdown in Disney World? A fight over who gets to sit near whom? She got one more french fry than me? I wanted to get wet. Why didn't I get wet on that ride? I'm cold. I'm hot! I'm thirsty! This line is too long! She is touching me. We already rode Snow White 12 times this trip why do we have to ride it again? (The last one is my complaint! LOL!)

Have Fun! Do you really care what people you have never met & will probably never see again think? You can't help being who you are & God doesn't make mistakes!

 

[TiggerCate]

I so know what you mean! Our last trip my son was almost 11 (in 2005). In the last few years, we have been through so much with him. Unbelievably, even though he is more functioning, more often, the behavior we go through now makes the early tantrums and feces spreading seem cute in comparison. When we went the last time, all of a sudden he was afraid of rides he wasn't afraid of before. I had to bail the last minute at Pirates to stay with him, because he REFUSED to go. He screamed and tried to get away at Haunted Mansion, too, but I held him close through that, because I knew once he was past the elevator, he would be ok (he was, but it was a loud close call.)

I don't want to scare you and tell you it will get worse. It might not..this might be the worse of it, but this is a rough time period. My son is 14 now, and he is less likely to do things like dart out of the house into traffic (like he did at 10, 11ish), but he threatens us and cusses at everyone, because he thinks that is appropriate as a teenager. He is also now taller than me, so it's harder to physically handle him. So, I am sorry, no advice, but I wish you luck and to let you know, I have been (am) there! There is a lot less advice and info on puberty (and the verge of) and autism than there is for the young 'uns. If you would like to PM me, I will tell you the med combo he is on.. I don't know if that would help you, but it did help us somewhat.

 

[christymarie]

My two boys are Autistic but younger. I just wanted to jump in and say I have similar anxiety about what people must think and how to communicate with them that this is not a typical child. I know I just need to get over it but that is easier said then done, lol.

I think the stroller/wheelchair idea is a great one. I think it does two things, it allows the child a space that is theirs PLUS when people hear him screaming about Mickey's pants and look over what they will see first is the wheelchair and then automatically put two and two together. (not that a wheelchair automatically means that you have anything other than a physical issue going on with you but hopefully you know what I mean, we're talking about "hidden" disabilities and a wheelchair makes it much more "unhidden" in this case)

I really hope I'm making sense, lol.

 

[DisneyAnna]

I feel like you are looking into a Crystal Ball and viewing my life as it was a few years ago!
We had taken our son on the railroad, as he was having a tough time, and he loves trains, so it made sense. He had a MAJOR meltdown!! Crying and carrying on--and some older guests were behind us and I overheard one of the women say "I did NOT pay all this money just to hear some kid scream! Why can't they shut him up!" I WAS MORTIFIED!!! But the cast member operating the train just looked at my tears, and told me (in a loud voice!) that my son had every right--if not more so--to be there. I sooooooo know where you are coming from. To look at our kids, they appear typical, but the slightest thing can set them off.
My son is now 17, stands at least 6 inches taller than me, and he too became aggressive/violent as puberty hit. We never wanted to use medications for him, but it became necessary--for our safety and his. He became so frustrated trying to communicate with me---and as his Mom I should know what he needed--that he literally beat me up! I had to be taken by ambulance to the hospital and x-rayed for skull fractures, broken jaw, and concussion. I don't mean to ramble--I worry for your safety.
We now have him on anti-anxiety,anti-seizure,anti-depressant, and anti-convulsant meds. and life is good. We use valium (5 mg) when need--which thankfully isn't often.
I would love to discuss privately with you--I just didn't know how to find your information, and I apologize to everyone who has had to endure my story. Please contact me if you need/want a shoulder for support---

 

[mamacate]

My son is much younger, but I have been hit, kicked, bitten, had things thrown at my head, and have been spit on at WDW. Usually when it gets to that level, I'm calmly responding, and people just sort of get it that this is not just "bad behavior." He also misinterprets things people say or do and sometimes shoots his finger like a gun at a stranger or calls another kid "mean" or "idiot" because of something that the other person doesn't understand at all, and I just apologize and move on.

I'm working on not caring about the nasty comments. My son is just reaching the "that kid is DEFINITELY too old to be having a tantrum like that" age at 7, so maybe when my he's 11, I'll have gotten there.

Picture schedules of the touring plan (and the willingness to abandon the touring plan at any moment as needed) helped a lot. Disney is tough in some ways (crowds, walking, heat) but ideal in others (structured, familiar, full of proprioceptive input, predictable, unchanging). All in all, it's a pretty good option for a vacation, knowing there aren't always vacations from behavior. I've been hit and kicked and all of the above on Martha's Vineyard, and in Colorado, and etc. too, sigh.

Not much advice, but a "me too" for ya.

Cate

 

[mousygirl]

I give you guys a lot of credit- I know it must be so incredibly difficult.

Just wanted to let you know that we don't have autistic children, but we certainly understand meltdowns at the park and don't think anything about it. If anything, we really feel for you because we know it is more unpleasant for you more than for a stranger. (You can't walk away)
Wish there was some sort of sign or hand gesture we could give to let you know that we understand and to not worry about it. A little compassion goes a long way and I am just sorry that people can be so nasty.

 

[WendyisDarling]

Again, thanks. It really does help to know others have been there.

I hate to write it, but I almost always have bruises from DS. A couple of times I thought he would break my arm or wrist--these were times of improperly restraining him so he wouldn't hurt himslef. Mother's instinct.

DS is excited about our upcoming trip. Wheelchair may be an option at the end of the day when he's worn himself out. I couldn't keep this child in a stroller after he figured out how to stand. I remember the days of chasing him while pushing a stroller-arg! I look back at those days and wonder how I made it through. Sometimes now I even reminesce (sp) and half-chuckle at all the unbelievable things we went through. It sure wasn't funny then, but now...Oh what a ride life has been.

Still, always willing to give anything a try.

As far as understanding/support from a stranger: usually I can pick up on the facial expression and it is a relief. It isn't pity, it is just that "it's OK" look.


I still have hope that we will have a really terrific trip and things will be like when DS was younger. Holding on to the optimism, but also being realistic. Just in case, I booked a BD trip DS. Crossing my fingers I won't need to cancel.

 

[Leajess99]

I hope the trip goes well and that the Magic of Disney helps your son enjoy his time there. I have children with ADD/ADHD and while they also do some inappropriate things I also worry about what others think. I also have a 6 year old that melted down at DTD last year and I know some of the looks you get (especially the ones from people looking at me like i was killing my child) but it was also nice to see those looks of care and empathy.

 

[Leajess99]

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.

First off, who cares what others think about your child going to Disney?? Sorry to be blunt but there is no rule that says a child with Autism or any other special needs or illness cannot go to Disney. It irks me to see how some people get treated be others but then I remember how many caring and understanding people there are and not let it ruin my day. Seriously, I would not see your child's behavior as an intereference to my trip. Shoot there are always things that others may do that may bother someone but you just can't please everyone and if a child having a meltdown or yelling out something possibly inappropriate is going to "interfere" or ruin their experience than maybe they are not at the right place. JMHO

As far as the puberty issue, I found when my son started going through puberty his impulsivity increased a lot. That is something we have been working on as well.

 

[SlightlyGoofy]

My special person is much older. I have many of the same issues though. Disney World is almost a second home to us as we go so often and stay so long. I have found that keeping things simple, making sure he gets lots of sleep and is fed when he is hungry and taking thing easier than most folks make things a bit easier.

He will still get excited at the thought of a parade and run up to a bench and almost force the people already sitting there off.

I have found DW to be a very accepting and understanding place. It is amazing how many CM's and guests have experiences with differences and thus are not freaked out at such behaviors as some places might be.

My problem is that my autistic/Asperger's person is my 75 year old husband. Folks understand telling a child or even a teen in detail how to do something over and over again but when a wife has to tell her husband such she comes off as being a 'witch'. I prefer to call it Cassandra Syndrome. Sounds better.

I love the idea of some sort of sign that can be worn by folks with problems to alert others. I need one for not being able to hear myself.

Bless all of you who are giving your children a better chance of coping with life than my husband ever had.

Slightly Goofy

 

[toodycat]

We've all been there. Going to WDW with an ASD pre-teen is tough. But, don't worry about what others think. If they are at WDW watching your son instead of the fireworks, the characters, the parades or Fantasmic, then they have spent a lot of money to check out the wrong attraction! You don't know who those people are or what their behavior is like in their daily lives. They may be drunk and argumentative in public places or park in handicapped spots without a sticker or pass gas in church. Who knows? If they say word one to you about your child, they have no manners. Period.They have no right to judge you or your son and your daily challenges.

Now some suggestions on how to make life a little easier:
1. Get to the park early. Do what you can do until DS shows signs of a little wear and tear. Then, stop and go back to the resort for a swim if possible. Obviously, this is easier if you are staying at WDW. If it's not, find a semi-secluded spot where your son can regroup. We've used Tom Sawyer island for this purpose.

2. Tell the CMs about your son before you board an attraction. They may be able to coordinate things to make your time a little easier.

3. Dress your son in something bright that will make it easy to find him if he runs away. My son had to wear neon turquoise, yellow and blue T-shirts on his first visit, so that I could always see him.

4. Bring his own raincoat or poncho. If it rains, then everyone buys the WDW poncho.

5. Does he have sensitivities? Try to avoid the attractions that might bring them out. My son couldn't deal with anything that had loud noises. No Fantasmic, for example. He also couldn't bear anything scary in 3D. On the flip side, a lot of ASD kids love "Soarin" because of its vestibular appeal.

6. You didn't mention whether or not you are getting a GAC, but I would recommend one.

7. If you are flying, make sure he isn't wearing a hoody on the plane. My own son got stopped last summer and pulled into a chamber where they blew air inside his shirt to make sure there was no contraband. Fun, fun, fun. A pilot tipped me off that the hoody was the problem.

8. My son can't deal with crowds. We watched the fireworks from a rented boat in the lagoon. It was expensive, but it kept him calmer.

Above all, hold your head high. Your son is a good person who has some different behaviors. You are a good mother who is trying her best to accommodate him, so he can have an experience that lots of other kids also enjoy. You should be proud of yourself.

 

[SueM in MN]

6. You didn't mention whether or not you are getting a GAC, but I would recommend one.

For anyone wondering about a GAC (Guest Assistance Card), there is more information in post #6 of the disABILITIES FAQs thread. You can find the thread near the top of this board or click the link in my signature to get there.

 

[WendyisDarling]

If they are at WDW watching your son instead of the fireworks, the characters, the parades or Fantasmic, then they have spent a lot of money to check out the wrong attraction!

I love this statement.
I think it might make a great t-shirt or button

 

[scojos]

for what it helps, im in too!
ds now 9, was calmed last year by silly things, we were on the DDp and believ it or not, when we had a sit down meal during the day he was better - dont know why, stability, normality, timings, not sure, but hey, thought the tip might help.
i have seen mentions of t shirts and thought i would share this, its from last year and shared back then, but as some of you are new, i ll share again if you permit-
DS is convinced stitch is autistic, due to his behaviour, an dtherefore we all love stitch, so the best friends bfast at the poly was an obvious choice for us.
i warned the handler as soon as we sat down that josh was excited, and although he would never hurt anyone, he would run over for a cuddle. both handler and "stitch" were amazing!
i share this because we printed the tshirts you were talking about, and everyday we had a different autism disign, 1 of us, dh or myself, and josh had his own special t shirts done (it also saved me a fortune buying official merchandise.

thats the close up - ill try and find you a link if you r einterested to original dis ign, they are all done by the talented disigners on here. the "brother" one comes in "son" and "daughter" versions too!
the family one says "one in 150 families are affected by autism. please be patient"
we had loads of compliments on them, other autistic families asking where they could buy them - they really made our holiday easy as we were "transparent" didnt hide anything, and therefore didnt experience any bad looks or snide comments (well that i noticed anyway
hth
tracy

 

[WendyisDarling]

Oh, WOW. Yes, please share the link!
Very cool.

 

[sharadoc]

I think I may have posted this earlier, but I am putting autism Mickey Ears on the sleeves of ALL of our family shirts, so we always have an autism indicator.

 

[WendyisDarling]

Where do you find the autism Mickey ears clip art? Or is everyone just more computer savvy than I?

 

[scojos]

I think I may have posted this earlier, but I am putting autism Mickey Ears on the sleeves of ALL of our family shirts, so we always have an autism indicator.

sorry, thats why i added my images, didnt want to steal your thunder
we did that too - with im joshs mom /dad/brother/sister...

they are off the disigns thread on here, i ll alook in the morning, just got back in after a night out...
tx

 

[PrincessMom4]

where can you get one for Sneosry Processing Disorder with ADHD and anxiety??