DS: Autistic older child --UPDATE POST #61

[PrincessMom4]

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

totally agree... I hate people watching me...yes its hard to understand this "normal looking" child has special needs, but its true. She(or he) has a great big heart.

 

[Leajess99]

"DS is convinced stitch is autistic, due to his behaviour"

Sorry but that is so cute. I also love your shirt ideas.

 

[Momma2dakidz]

Just wanted to reply and share a story so you know your not alone.

1999 I (20 year old care provider) take a 10 year old boy with profound autism to our local amusement park to ride the rides. (we went EVERY week!) Well he saw the cotton candy stand and all hell broke loose! HE raged over that damn candy for an hour on the main drag. How do you get a 150 pound raging child out of view? YOU DONT! You ride it out. He is screaming candy candy candy candy then starts with water water water water water (when he is done with dinner, lunch, snack and asks for more we say no more but you can have water) so after the 6th glass of water i was brought. (kind people thinking the child is just thirsty and i am mean) I finally get him to take it and he SPITS it out on some ethnic family saying "not this SHI#" At this point i fear for my safety....so i attempt to bribe him up. i get him up and world war 3 starts again, this time though he turns majorly aggressive and in the struggle i loose my bikini top! A lady kindly picks it up and hands it to me.....YEAH right i have a child desperately trying to bite my ****ies, no way in heck can i take my hands off him to put my top back on. I finally manage to get him half way out the turnstiles. And security is staring at the topless teenager battling with the LARGE child. Finally i have a mother come up and say...."My husband is coming to help"... GREAT just what i need a know it all bystander. Well what i didnt know is he is a social worker for a severe behavioral health facility. He comes up and says what kind of take down do you want to do, never in my life have i been so happy to hear those words. We get him subdued on the ground,(seriously 2 hours later) I get dressed, and ask the family to go get my car! I had to trust strangers to drive my car to me! Long story long i get my car, get him shoved in it. (if you pull the belt all the way out the belt can be put on snug so he couldnt get to me.) and i am on my way home. 1 hour 30 minutes of SCREAMING at the top of his llungs in the car, ends when we pull in the driveway and he says "go ride?" ARGH took all my will power to answer nicely, nope not now, next week we will try again.

We made it through this and so will you. The sun WILL shine and so will his smile!

Next week when we went he calmly accepted the "no cotton candy" comment and walked past on his way to his favorite ride.

ps I didnt give in to the candy request because dyes will make him have alll out rages for days. And honestly after the ripping of my top i didnt give a crap what he wanted he wasnt getting a darn thing. LOL

 

[SAGE]

Just wanted to reply and share a story so you know your not alone.

1999 I (20 year old care provider) take a 10 year old boy with profound autism to our local amusement park to ride the rides. (we went EVERY week!) Well he saw the cotton candy stand and all hell broke loose! HE raged over that damn candy for an hour on the main drag. How do you get a 150 pound raging child out of view? YOU DONT! You ride it out. He is screaming candy candy candy candy then starts with water water water water water (when he is done with dinner, lunch, snack and asks for more we say no more but you can have water) so after the 6th glass of water i was brought. (kind people thinking the child is just thirsty and i am mean) I finally get him to take it and he SPITS it out on some ethnic family saying "not this SHI#" At this point i fear for my safety....so i attempt to bribe him up. i get him up and world war 3 starts again, this time though he turns majorly aggressive and in the struggle i loose my bikini top! A lady kindly picks it up and hands it to me.....YEAH right i have a child desperately trying to bite my ****ies, no way in heck can i take my hands off him to put my top back on. I finally manage to get him half way out the turnstiles. And security is staring at the topless teenager battling with the LARGE child. Finally i have a mother come up and say...."My husband is coming to help"... GREAT just what i need a know it all bystander. Well what i didnt know is he is a social worker for a severe behavioral health facility. He comes up and says what kind of take down do you want to do, never in my life have i been so happy to hear those words. We get him subdued on the ground,(seriously 2 hours later) I get dressed, and ask the family to go get my car! I had to trust strangers to drive my car to me! Long story long i get my car, get him shoved in it. (if you pull the belt all the way out the belt can be put on snug so he couldnt get to me.) and i am on my way home. 1 hour 30 minutes of SCREAMING at the top of his llungs in the car, ends when we pull in the driveway and he says "go ride?" ARGH took all my will power to answer nicely, nope not now, next week we will try again.

We made it through this and so will you. The sun WILL shine and so will his smile!

Next week when we went he calmly accepted the "no cotton candy" comment and walked past on his way to his favorite ride.

ps I didnt give in to the candy request because dyes will make him have alll out rages for days. And honestly after the ripping of my top i didnt give a crap what he wanted he wasnt getting a darn thing. LOL

Gee....I can picture the situation! I admire you for continuing to work with the young man. My worker probably would have quit!

When my son was little and a carnival came to town (kind that set up in the local shopping mall parking lot), I would avoid driving anywhere near it.
Any type of amusement parks - we were sure to have a major meltdown.
Guess that's why it took so long to visit WDW.

 

[SAGE]

 

[PrincessMom4]

Momma2dakidz, here is a huge hug to you. You are such a strong person. Its so hard to handle children with special needs. My DD10 has SPD and there are days were it can be nightmarish for us. My daughter had a meltdown (well she tried to run away from us and we would tell her calmly but firmly to stay close to us for its safer with mommy and daddy) at WDW. People were looking at us like we were the attraction. You can't just "walk away" but if you talk to her calmly it still doesn't work. I wish there were more social workers like the guy that you met that would help. I GREATLY (and thankfully) accept ANY and all help/support.

 

[scojos]

hi, have had a quick look, cant find "my" disign (and boy it is soooo not mine, lol!!)
but thought you might like these, all the dis igners are brill on the dis ign thread and will help in any way than can.... beware dis igning is addictive!!

if you want advice on how to print these, pop over to dis ign thread too ...
tx

http://s143.photobucket.com/albums/r132/donatalie/Tshirt Designs/Autism/

 

[scojos]

errr, sorry didnt look very hard
http://s205.photobucket.com/albums/bb317/rumblytumbly_bucket/Autism - Aspergers/?start=24
#
donatalie is still active on the boards, though i think kari (rumblytumbly) is taking a break,
hope these can help someone,
tx

 

[Bearshouse]

I have to say I really like the ideas about buttons and t-shirts about Autism.

I am not only a mom to DS with CP but a caregiver as well. I have mostly kids on my caseload since I am a mom who is on the same boat, just in a different part of it. When a client has a meltdown I make sure to take a second to reach in my purse, pull out my name badge. It is all official and people in our area know then they are clients. I am less likely to get people "trying to help" and more likely for them to keep walking.

Big hugs!

 

[PrincessMom4]

Can I get one that say "Sensory Processing Disorder" instead of autism??

 

[Momma2dakidz]

As for workers quitting, treat them right and they will stay. After 9 years of 7am-9pm 5 days a week I quit without any notice and never looked back. When i asked for a behavior eval to be done and dad said "its just you that he hates" ROFLMAO ok sure! thats why YOU had a nervous breakdown and built him his own "house" in the garage, and thats why your wife,,,,his own mother would no longer sit next to him(he would just reach over and bite her). UGH! When i quit they put him in a residential facility and he has no family visitation. SAD!

Good workers are hard to find, and good families are just as hard. The pay was excellent and i truly miss working one on one, but i dont think i could ever do it again after that episode.

 

[Cupcake88]

Mine is 16 now. I go to WDW and relax. I don't care if he carries a Beeker doll around all day and talks to it. It's Disney. I just smile. I let him be HIMSELF because of all the places in the world Disney is where he feels MOST himself. He actually says it's his "home" and where he wants to live and work. Granted, he doesn't have the sensory behavior but still.

In January we used our GAC to ride Soarin (which I am thinking is every autistic kid's dream ride!). This lady says to me, "So what, you get special treatment because it's your birthday?" (My kid had a button on for his birthday and we all had autism shirts on of some sort - that DOES help believe it or not) I said, "No. This card allows my son, who has autism, to get what he needs because waiting is difficult for him." She snarks, "Must be nice." I looked at her and said, "Yeah it IS nice. Because when he's here he can be treated like a special guest and enjoy HIS stay just as much as anyone else. But at the end of the day, everyone goes home with their typical kid and my kid still has autism. It's nice but it doesn't change MY reality or HIS."

Then I got to the line and asked if we could go on the first row and was granted my request. I smiled at her

Sharon

PS. While we continued to wait she got the pleasure of my son jabbering on nonstop about his love for all things Mickey for about 10 minutes. I just smiled pleasantly. At least she didn't get his 2 hour Titanic lecture

 

[PrincessMom4]

Oh I like your "spunky" manner. I would LOVE to being able to tell others that stare or wonder. Tell me your secret for doing this.

 

[scojos]

Can I get one that say "Sensory Processing Disorder" instead of autism??

drop an email to one of the disigners, donatatalie is still active, and ask nicely...
they are usually very helpful.

im glad you liked the ideas, but i only found them, soemone else did the hard work
if you use them, id love to see the end results!
tracy

 

[NDdisney]

We are going again for 2 weeks starting Oct. 1st. My daughter - who has autism & tourettes syndrome - will be 11 this year, and each year we have new chalanges to deal with.

Some things we have learned over the years are:
AVOID parks with Extra Magic Hours - they are always busy.

We all wear matching shirts at the parks - myself-husband & daughter - this way we always know what she is wearing - and its easier for her to find us.

Pin trading!! - this gives my daughter a chance to interact with the CM's - and most of them are Great with her - this really keeps her focused on something positive for her... and not so focused on the things we can't control (Other peoples body piercings will set her off big time ... but look.. a CM with PINS)

This is a problems we are trying to prepare for this trip -

Along with being autistic, my daughter also has tourettes.. and so if something is innapropriate to say... she will say it. We try to ignore this because we know she can't control it... but airport security isn't always so forgiving with this behavior. She has been known to say the "B" word in the airport & on the plane - and this tends to get the attention of security. We are planning a little extra medication for the plane - and keeping our fingers crossed. Any other suggestions? (Driving not an option due to distance).

 

[Leajess99]

As for workers quitting, treat them right and they will stay. After 9 years of 7am-9pm 5 days a week I quit without any notice and never looked back. When i asked for a behavior eval to be done and dad said "its just you that he hates" ROFLMAO ok sure! thats why YOU had a nervous breakdown and built him his own "house" in the garage, and thats why your wife,,,,his own mother would no longer sit next to him(he would just reach over and bite her). UGH! When i quit they put him in a residential facility and he has no family visitation. SAD!

Good workers are hard to find, and good families are just as hard. The pay was excellent and i truly miss working one on one, but i dont think i could ever do it again after that episode.

How very sad and awful for the way you were treated. Sounds like you were very good for him.

 

[Cupcake88]

I can't say I am spunky...I'd been up for 36 hours at that point (we went to work Thursday, had dinner, saw "Jersey Boys", left for the airport in a driving snow storm, stayed all night in a closed airport (1a-6a when we boarded), flew to Atlanta, waited, flew to Orlando, got to the resort, no rooms available yet, went to park...this incident was around 10:30 that night at Epcot) and was feeling a little wired to say the least. It ticked me off. I admit I DID see my life flash before my eyes when I said it but I was glad I did

Sharon

 

[campbellus]

Wendy,
Good luck on your upcoming trip. I just wanted to throw in another "You are not alone" statement. My DS has a chromosome disorder and he has many, many autistic spectrum/OCD behaviors but because he has a chromosome disorder they cannot for sure say that he is Autistic. He too has a problem with volume and cannot wait in a line to save his life. We often worry that he will say things that are so inappropriate, but when it happens, it happens and we deal with it and move on. We have found it best to use the GAC card and stay away from things that we know set him off. We have also heard the same things from doctors regarding the onset of puberty. 11 was about the time our real behavior problems started. (he is almost 14 now)
Something that has worked well is riding in the front of the monorail-for some reason, that sets off the right sensory response and has a very calming response for him so we try to do it each morning if possible, even when we drive or take a ferry or a bus into a park. ALso following the never go to a park with EMH-we stick to parks that are least crowded and went at the least crowded time of year until I had to return to work and can only go during holidays and summer now.
It sure sounds like you have taken every precaution for trying to plan for any situation. All you can do is sit back and enjoy the ride and be ready to let things roll off your back. I am sure your skin has become a bit tougher than most others and your trip will just have to be one of those times that you put it to the test.
I think the extra dose of medication is wise if it is possible as well as renting a double stroller(we did that as well until our DS was 11) and having some sort of button or identifying itemeither on him or on party members. This is bound to have an effect on at least some people's if not all people's reaction if something is to go awry.
I wish you the best of luck and I am anticipating a positive trip report from you when you return.

 

[KathyRN137]

DS is now 11 and I'm growing more concerned about his behavior for our upcoming trip.

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

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.

Hi Wendy!

My son is also eleven and autistic and he has been having more behavior issues in the past few months. I definitely think that a lot of it is due to increased levels of testosterone pre-puberty. (That pesky testosterone is always causing us trouble, right ladies??)

You are definitely not alone!

Perhaps instead of shirts that apologize for his behavior or label him with his diagnosis, you might consider getting shirts with a simple "Autism Awareness" logo, or something similar. My son loves going to the library, but he often gets loud and excited and stims a lot when making his selections. He carries a book/tote bag is from Autism Speaks and people usually get the hint...

PM me anytime....


Kathy

 

[Pixie Holler]

There must be days where it is so overwhelming and on those days you have to cling onto everything that is so precious about your DS - gosh and how hard that is.
My only words of wisdom that I can give you is that if you can remain calm and in control, those around you will understand that there are issues at hand and that it is not the behaviour of an 'unruly' child. People pick up on others' vibes very quickly, if you are in control then they won't linger on it. If it catches you in a moment when you think ' I just can't do this' and we really have all been there, then it makes it worse for you because you are focusing on how others are perceiving the situation rather than you being able to focus on what is important - getting some control back.

I pray you have a wonderful vacation - you've certainly put the groundwork in - and don't go with any preconceived ideas - just go with the belief that you are strong and you can get through anything, one day at a time.