Asperger's..............

[crazyme5kids]

It is very apparent that my nephew is not "the same as other children". I would rather talk to kids ahead of time about it, let them ask questions, so that when they are around him they understand why he is the way he is, rather than them saying he's weird and avoiding him. Lets face it, kids are kids and even under the best of cicumstances they can be mean toward one another. My sister has actually gone into some of his mainstream classes ahead of time to speak to the children to let them know what to expect when he comes in.

 

[SandraC]

My sister just told me that my nephew has a girlfriend! How cute! S

 

[s&k'smom]

Ohh Sandra C that's so sweet. Nothing like young love.

 

[SueM in MN]

I have known of several children who have either a AS or PDD diagnosis that the parents said the child was not ready to know all about it. These children's ages range from 7, 11, 12, and 16. Yes one parent felt her 16 could not handle it. It wasn't that the parent couldn't accept it.

Having worked in an inpatient child and adolescent mental health setting and as a school nurse, I have to respectfully disagree with not discussing it with the kids. (I don't advocate people just imforming kids without the parents knowing this will happen).
I think in most cases, it is the parents who are not ready to accept it. In almost all cases, the kids are already aware there is something "different" about them and the other kids have also picked up on it (and some might be teasing them about it). Some of the kids in the inpatient psych setting were suicidal because all they knew was that they were "weird" and didn't do things or think in the same way as their peers. For most kids, it's a relief to know what the "Weirdness" is all about, that it has a name, that other people have it too and that there are things that can be done to make it easier to cope.
If the parents won't talk about it, all the kids know is that it is a subject that they can't bring up with their parents. That's a very lonely place to be.

 

[melomouse]

Hi All -

Haven't been to this section since last year's trip planning for our trip w/my late DH in his ECV, but now I scroll through and see all this on Asperger's.

My son is 10 1/2 now and was formally diagnosed in 1999. He does very well academically in his mainstream class with a FT aide and got high honors all last year. That's the good news.

Socially it sometimes breaks my heart when he has to enter a whole new group. His school peers at this point know how it is with him, some adore him, some tolerate him, others make fun.. He's getting better in some situations. Loves water, video games and pretty much can do well in restaurants.

Back to WDW we go in 10 days, followed by a 4 day cruise. I am now a single mom and have a nearly 6 y/o DD
My son was great in WDW last year - it was almost as though the extra stimulation was good for him. He memorizes numbers, facts, locations and has a great memory.

My worst fear is that he will lock horns w/ my mom, who is meeting us for her 1st WDW trip. - we have 1 room at WL and my son triples in volume when in a confined space!

One of the toughest things about his Asperger's is his loud voice that sounds like he's shouting most of the time - but never, say, in an attraction, because there's a RULE - and no one had better even sneeze! Another tough aspect is the unpredictability - but I can now see meltdowns starting - and have to transition him out - quick!
I enjoyed reading everyone's posts =-there are a number of web sources to help. Also - other Dis-Asperger moms, I think I will PM you sometime soon. Feel free to do the same!


On Our Way in 10 days!!!

 

[Figment1964]

Originally posted by melomouse

One of the toughest things about his Asperger's is his loud voice that sounds like he's shouting most of the time - but never, say, in an attraction, because there's a RULE - and no one had better even sneeze!

Oh, my goodness...the rule thing! That is such a HUGE issue for my son. And watch out anyone who doesn't follow the rules! He gets so stressed out when someone doesn't meet his expectations along those lines!

It does my heart good to hear others say they are dealing with the same things we are!

Have a great trip...my son always does well there, too

 

[s&k'smom]

Talk about rules, my DS who will be six on Monday told me when he went to camp the other day "I made good choices". I think knowing the rules or maybe what's expected is a comforting things to some of thes ekids. At least with my DS structure is key for him to keeping it together and knowing how he should behave.

 

[Figment1964]

Originally posted by s&k'smom
Talk about rules, my DS who will be six on Monday told me when he went to camp the other day "I made good choices". I think knowing the rules or maybe what's expected is a comforting things to some of thes ekids. At least with my DS structure is key for him to keeping it together and knowing how he should behave.

That's exactly it for my son, too. He knows what to expect with rules and how to respond. It's the unpredictable that really gets him. This summer is particularly difficult for him, because as hard as I try, it's still not as structured as school.

 

[SueM in MN]

Talk about rules, my DS who will be six on Monday told me when he went to camp the other day "I made good choices".

That's really sweet. Nice that he could recognize that he had done it.

My DD doesn't have Asperger's, but along with Cerebral Palsy, she has a lot of challenging behaviors. The hardest one for us to live with is what we call "K's rules of conduct." She has rules for how otherpeople are to behave, like who can sit in which chair under what circumstances, how you are supposed to leave the phone cord after using the phone, people not sleeping in theaters, etc. Do your kids with Asperger's have rules like that for other people's conduct?

 

[Figment1964]

Originally posted by SueM in MN

Do your kids with Asperger's have rules like that for other people's conduct?

Oh, yes! But the thing is for my son is that he really thinks he's following those rules, too! He's become very safety conscious about what his little brother is doing...quite concerned that he'll choke on something (whether or not he's got anything near his mouth, and he's 4½!), or that he'll go in the street when he's not even near it. A lot of it, I think, is that he thinks about all the "what if's" and those thoughts become real to him and he cannot help but be concerned about it.

We were recently at McDonald's and my AS son was very concerned that his little brother, who was about 4 feet from us, was going to get lost and he couldn't get past that until I had little brother come and stand right next to me. But then he couldn't be next to my AS son because he was "in his space" and bugging him! I can't win!

 

[melomouse]

Oh Yes!

Boy, Figment, sounds like our kids are so much dancing to that AS drummer. He's on meds for anxiety, which has SOMEWHAT reduced the constant worry about his little sister, but still, it's tough. When DD recently fell and needed stitches, it was DS who was most hysterical, thinking she would die!

The other problem with the rules comes, I thhink from the AS disability of "pragmatic" language skills, which does not allow intonation and facial expression to add to the literal interpretation. My son will loudly correct anyone who's not doing it right. I have just about gotten past the embarassment. On my worst days, when I say" I can't take it anymore!", I stop myself and think what it must be like to be Evan, and I am filled with compassion for my "baby" again!