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

[crazyme5kids]

Hi everyone I need some advice please........... My nephew has Asperger's. He is a delightful, funny witty child, but as you know children don't always know how to deal with an Asperger's childs nuances. What I need advice on is this.... My son will be celebrating his birthday, and we have discussed having a small party or doing something special with his cousins and two or three friends. In order to help make the day enjoyable for all, especially for my nephew and sister, how can I prep my sons friends so that they will understand my nephew's differences and behavior better. Is there any literature avaliable (short and to the point) geared towards kids? I will speak to the parents, so they could talk to their children. I just want this to be a fun day where no one feels bad.

 

[SueM in MN]

I don't have any personal experience except that my nephew also has Asperger's. I also have experience as the mother of a multiply disabled DD. My older DD would just tell her friends, "this is my sister, she uses a wheelchair." The main point we found with our situation, is if you tell too much, the kids expect someone who is acting really weird and they are afraid to interact with the child. There are posters/readers who come here with more expertise in autism spectrum than I have, so hopefully one of them will have some good info for you.

There are a few websites that my sister found helpful: The best one is the OASIS, an online information and support website. And here a link to Asperger's Sydrome Society website.
Another all purpose site that has a Q & A forum is Exceptional Parent

Good luck in your quest for information.

 

[crazyme5kids]

I spoke to my sister, and she said just be brief and to the point. I guess I was concerned, because a couple of years ago we had a problem with a few of the kids at the party. It was also a very stressful time for my sister, due to the fact they were still trying to find out what his disability was and how to deal with it. I hated seeing my sister in pain as a result of how the kids were teating my nephew. She has grown and gained so much knowledge and wisdom these past few years. I can't begin to tell you how proud I am of her and my nephew!

 

[dpaine]

My son has Asperger's. He is now 11. I have found that with my older son's friends that the direct approach is usually the best. But I did find a little book called "Joey and Sam", by author Illana Katz. It is a wonderful story about autism and it is geared for young children so they may better comprehend the differences in other children. We have never had any type of party for my son because he does not like that kind of attention brought on to him. We did take him to Disney for his 6th birthday and Quasimodo (his favorite character) presented him with a birthday cake. It was truly a magical experience. I hope this has been helpful.

Deb

 

[crazyme5kids]

Thank you for the name of the book. I have been wanting to find one geared for kids. I am going to speak to the childrens parents, just give them a little info as far as how my nephew acts. They can speak to their children, and my sister will handle any problems if they arise. Again, I just want my nephew to have fun too.

 

[SandraC]

My nephew also has Asperger's. He is 15 years old. I thank you as well for the info! S

 

[crazyme5kids]

Another question if you don't mind. For those of you with children, relatives or even friends of older children with Asperger's (my nephew is 9). Since Asperger's generally takes longer to diagnose, around age 6,obviously these children miss out on intervention services in their early years. How are they doing now? My nephew is doing well, but there is a long road ahead. How are these children as they approach, reach and during the teen years and beyond. Thanks for your insight into Asperger's.

 

[dpaine]

We knew that my son had something going on very early on. I guess that was lucky for us because he received services, first through Easter Seals, and then through the school since he was 2 1/2. Now at 11 I find that despite his disabilities, he is quite typical in a lot of ways. I wish I could see what was in store for him. I do not know anybody with Asperger's that is older than my son, so I would be no help in that area, but feel free to ask any questions and I will do my best to help answer them.

Deb

 

[crazyme5kids]

We knew something was going on withmy nephew too, it just took so long to get the proper diagnosis, many specialist etc.... He is normal in so many ways and very, very smart. A lot of his problems are the typical ones, but the one my sister is concerned most about is the social issue. It can be hard for him to interact with other kids, so often times they shy away from him. My son goes on vacation with them, (they just got back). My sister said it was so nice to hear the two of them having conversations back and forth, because he doesn't get enough of that kind of peer one on one interaction. The kids in her neighborhood try to be patient with him, but it can be hard. She has approached his school about instituting a peer mentoring program that she read about. She is doing the leg work to get all the infomation and is going to push to get it going. Luckily my nephew's school is trying to become a Blue Ribbon School, so she thinks they will go for it.

 

[SueM in MN]

There was a really interesting 4 hour series of shows on the Discovery Channel that included a segment about someone with Apergers. The show, hosted by John Cleese, was The Human Face and was originally made for BBC. I first saw it quite a while ago and it was re-aired recently.

One segment of the show looked at what you can tell about emotions from looking at the human face. They said one of the things people with Aspergers have trouble with is identifying emotions/feelings from visual cues. They showed John Cleese pictures of faces showing different emotions while he was hooked up to a machine that identified which part of the brain is active. Then they did the same thing with a young man with Aspergers. (He is a college student) His brain was literally not wired the same as most people and he had a lot of difficulty identifying which picture was supposed to identify which emotion. He talked about how he has had to "train" himself to figure out what people's faces are showing. Also, how difficult this was because it's a skill most people take for granted and there is no instruction book on how to do it.
Some of the things that the average kid picks up from visual cues starting from birth, like mom is displeased or he has made a mistake, just is not available information to him. He also indicated that he has trouble (I guess you could say) "putting on the right face" in social situation. He has taught himself to look at other peole and try to make his "face" match theirs, but he said in social situations, it's really hard because there is so much going on and so many people to watch. I thought it was really fascinating and explained a lot of Asperger behavior that I have seen. Without knowing what emotion is supposed to go with a message, it's sometimes hard to interpret or even means something else (like some internet posts that are meant to be funny, but don't read that way unless you know they are funny). That gets the person with Aspergers into difficult situations because they do things others consider "weird" - everyone else knew something was a joke, or the person with Aspergers does something that doesn't "match" what others are doing/feeling.
There is a book about the show, although I don't know if it includes info about that segment. Here's a link to information about the book and it's apparently available as a DVD. I think the final hour is the one that includes the man with Aspergers.

 

[crazyme5kids]

I saw that show too! That's the thing with my nephew. He just doesn't understand the difference between appropriate and in appropriate behavior. That's why it is so hard for other children to play with him. I remember one time when a group of kids were playing kick ball, he kept grabbing the ball and running away with it, then he would throw it over the fence. He thought it was hysterical, but the other kids were getting furious with him. He didn't understand what he was doing was inappropriate, and they didn't understand his behavior, they just thought he was being a pest.

 

[s&k'smom]

Good morning, just wanted to add my two cents worth. My DS was diagnosed with PDD at 2. We have (or at least tried) not to shy away from things with him. My sisters kids treat him just the same as anyone else. Sometimes they call him weird but not in a mean way he just does weird things like any other kids does. My sister in law will tell her son that "he doesn't understand" (oh and that's another story ). With us it's really trial and error. Two years ago we had to bring him home from a mini-vacation but this year we are staying three days. So with time things do get better and you also learn how to handle things better. My sisters kids are pretty accepting as they had a sister who was total care so when they treat DS tough it's just because there being little monsters that day!

 

[s&k'smom]

PS to my last post-here in Mass on PBS they are running a POV show on mothers of four adults diagnosed with Autism and how they handled it years ago when they used to blame the mother for there issues.

 

[SueM in MN]

he kept grabbing the ball and running away with it, then he would throw it over the fence. He thought it was hysterical, but the other kids were getting furious with him.

That sounds like something my nephew would do too. Once might be funny and get laughs, but he doesn't have a clue that more than that makes it annoying.

He got in trouble for hitting kids in the hallways at school. He had been to a high school and noticed some guys come up behind their friend and give them a slap on the back. He tried it at school because he thought it was what he explained later was "friendly behavior." He didn't understand that it might be friendly if you do it once, lightly to your friends (who also do it to you), but it's not appropriate at all to just go around randomly slugging unsuspecting random people in the back.
He reminds me in ways of Data, the android on Star Trek: The Next Generation; very intelligent, curious, sensitive, but he can never quite figure out human behavior or how he should behave in social situations. He does well in structured situations becasue he knows what to do, but there are so many rules to remember in social situations and some of the rules only apply in certain situations. When he tells what he thinks is a funny joke, others don't understand it becasue he's working on different assumptions than they are. I think I remember that Data named his cat "Dog" because he thought that was a very witty thing to do, but the humans just thought he didn't understand the human world. A lot of those things really fit my nephew well.

 

[Figment1964]

My ds was educationally diagnosed with Asperger's last year at age 7½. (His behavioral/developmental pediatrician doesn't think he's got it but his primary care pediatrician does.) An "official" medical diagnosis doesn't really matter too much to me as long as the school is "officially" recognizing he has an austism spectrum disorder and keeps him on his IEP.

He's doing pretty well now, he's been receiving services through private occupational therapy since 1999 and through the school since last year. He has an aide for 2/3 of his school day with OT once a week. He's completely mainstreamed except for ½ an hour a day pull-out to the resource room for help with math. He has a few other "things" along with AS: AD/HD, Motor Dyspraxia and Sensory Integration Dysfunction...quite a mouthful! But all in all he's doing great.

His biggest struggles are his social skills, his writing ability (due to his dyspraxia) and some coordination problems. Another biggy is his stressing at any kind transition, especially if he isn't prepared for it ahead of time. But he's definitely making strides and we're so proud of him!

He's very rule oriented...if it's a rule, that's it, no going around it or deviating from it. We do lots of rules for things in our house and he thrives with it that. We schedule things in writing for him to refer to, even for things like a schedule of a party (i.e. 3pm guests begin arriving, 3:15 play pin the tail on the donkey, etc., or just a list of things in the order we'll do them). I have a BIG monthly calendar on the wall in the kitchen where everything we have planned in advance is written on (color coordinated for each member of the family) so he can prepare himself for upcoming events.

We're heading to DisneyWorld at the end of August and will celebrate his 9th birthday while we're there. He's begun to talk a little about that, but not much. We've been several times so he's familiar with what to expect but I'll still put together a trip "social story" book for him that includes a mapquest.com map and itinerary for him. Seeing it in black & white is so helpful for him!

I hope that gives you some insight to our life with an AS child.

 

[crazyme5kids]

My nephew has an aide all day. Transition time for him was always hard. Things have gotten better this year, although he has his bad days they aren't as much (use to be everyday was a bad day). He has a wonderful teacher who really works hard at finding what works for him, and is flexable enough to know when to bend. Let me tell you though he is sharp. His sense of humor is like that of an adult who leans toward sarcasim. He says things that crack me up!

 

[Poohnatic]

My son (6) was officially dx'ed in April, although we'd been trying to find answers for a few years. Ironically, we have a nephew who is 17 that is also dx'ed AS, but is adopted. It's interesting to see what my SIL went through in Michael's journey (I started dating my husband when Michael was 9), and he wasn't dxed until he was 12. I feel very fortunate that we know before Neil goes all through elementary school.

I do notice that with my son, you have to be upfront about most things, and he appreciates the matter of fact approach. He also likes it when he is 'in' on explaining to others what is going on with him. Perhaps your nephew may be the same way--Neil can already explain the nuts and bolts of what Asperger's does and how it affects him (he'll be the first to tell you "I have meltdowns and get mad sometimes, it's my Aspergers"). If your nephew is the same way and prefers, you may have him explain to the other kids a little of what is going on.

With Neil, we constantly have to tell him "that's inappropriate" for unwanted behaviors. It's like beating my head into the wall, but eventually, we seem to get through--this morning, he asked for a video in my room (a rare treat) to let me sleep in after being at work until 2:30 doing inventory! He is learning to 'read' mom's sleep quotient, hurray!

Good luck with the party. I'm hoping your nephew enjoys along with everyone else.

Suzanne

 

[mickey'sbud]

This is perhaps a very different viewpoint, but it is 'my' opinion only from where my personal experience has brought me.

I would be VERY CAREFUL explaining 'what ' your nephew or any other child has, to other children or anyone.--I'm NOT flaming anyone---Please don't think that.

I'm glad the mother did say it was ok to talk to the other children coming to the party. Usually, I AM very concerned w/ explaining too 'much' to other children, unless it is approved by the parents of the AS child . I say this not for any one person, but for anyone who reads this! I say this in concern for the child.....let me explain.

Some children on the spectrum have not had their diagnosis explained to them yet. Why? Because they are not ready yet. Should things be explained to them...certainly...but when it is appropriate. Only the parents can truly make this decision

So what does this have to do w/ telling other kids? Make sure the parents feel their child can handle anything said by other children. We know that some children take it upon themselves to be the informer to other children as to why one child does what he does or acts the way he does. Basically IMO it's no one's business. We are talking about a person here not just a child.

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. She felt it would throw her son possibly into a suicide state even when he was in 4th grade. And she thinks he can't handle it even now. So that's why I say "please be careful." By the way, he has AS and is an honors student and has dyslexia. Furthermore, these children sometimes are perfectionist...and if they aren't 'perfect' in their mind....wellll....how do you think they would feel about this?

Just make sure the parents truly approve of you informing the other children which in turn informs their parents...which may in turn inform every child in the school eventually. Is it ok with the parents???

This is not to scare anyone...it is meant to make everyone think of the individual with the AS or PDD diagnosis and the long term affects of what we do.

I can tell everyone here truly cares about someone w/ this diagnosis and I'm glad there is so much understanding.

By the way I am a parent of a son who has a PDD diagnosis and yet it has recently been lifted. He still exhibits PDD traits, yet if he can function in this world w/out the label then Praise the LORD!

I guess my overall point is...it's only a label which attempts to explain unusal behaviors...it's not the person.
Please be careful.

 

[SandraC]

I'd like to thank you all for your educational and emotional experiences with AS. My 15 year old nephew has AS. He was diagnosed late. My sister (single mom) spent years being called into school fishing dn from under principals desks and hiding in school bathrooms. The worst was when she was called into school because he climbed on the roof of the school. About 3 years ago, he was kicked out of school from threatening a teacher. Thing is, dn is brilliant. He get's A+ across the board. His social skills are virtually nil. One time in a restaurant he was jumping around picking stuff off of everyone plate and making a scene. My dd was was about 3 or 4 years old and confused about the situation. My sister was at her wits end. The diagnosis was a Godsend. She was thrilled to have a name for what dn was going thru. We all try to understand as best we can. We love dn so much! He has a friend or two, but seems to be on his own a lot. He has a very obsessive personality, which my sister tells me goes with AS. Thanks again! S

 

[SandraC]

I'd like to thank you all for your educational and emotional experiences with AS. My 15 year old nephew has AS. He was diagnosed late. My sister (single mom) spent years being called into school fishing dn from under principals desks and hiding in school bathrooms. The worst was when she was called into school because he climbed on the roof of the school. About 3 years ago, he was kicked out of school from threatening a teacher. Thing is, dn is brilliant. He get's A+ across the board. His social skills are virtually nil. One time in a restaurant he was jumping around picking stuff off of everyone plate and making a scene. My dd was was about 3 or 4 years old and confused about the situation. My sister was at her wits end. The diagnosis was a Godsend. She was thrilled to have a name for what dn was going thru. We all try to understand as best we can. We love dn so much! He has a friend or two, but seems to be on his own a lot. He has a very obsessive personality, which my sister tells me goes with AS. Thanks again! S