Sister of

[Miss Sunflower]

My 8 year old brother was diagnosed with Asperger's a few months ago. He also has Encopresis. He has suffered from both for years, but was only diagnosed a few months ago. (Don't ask, I would have done things VERY differently)

Although I am not raising him (although I can tell you sometimes I wish that I were), what are some ideas that you have for, I hate to use this word, dealing with him?

It is so difficult to communicate with him, and I feel like I just hit a brick wall. The enco. doesn't make it any easier, and I get very frustrated. Since he was born, we have had a very strong relationship. I spent A LOT of time taking care of him. My mom was in school full-time, and dealing with a volatile relationship (his dad was also in jail for awhile) so a lot of the care giving was left to me. It hurts me so to see our relationship crumbling as he gets older. It hurts me to see how different he is. I also don't think that he is getting the help that he needs, and I do not believe he gets the attention and environment that he needs. When I think about it, I just want to cry. I love him so much. I just can't be there all of the time, I have to live my life. I can't be around my mother all of the time.

Anyway, what is a better way for me to communicate with him? I try to have him look at me, to break his attention from whatever it is that he's focused on, but he just can't listen. He is obsessed with video games, and has very few friends. God my heart just breaks for him. I want him to be liked and loved by everyone, I want him to feel that he is good enough. He is extremely smart. He is very affectionate, but very rough. He tries to pick me up, and jumps on me all the time. He doesn't realize how strong he is. Sometimes I just think that he is so unhappy, and he doesn't deserve it! He should be enjoying his childhood. I always wonder if he notices our brother, who is six, behaving "normally" and if this affects him. He gets so angry, and so upset sometimes over nothing. He screams a lot, and starts to cry. At the same time, he is very logical, and can be very wise. If he is in a good mood, you can have conversations with him that are so far above his level. Sometimes he'll point something out to me that I would never have even thought of. He is so smart.

I just want him to be okay, and I don't want to ever lose what little touch I do have with him.

[justjen]

I completely understand where you are coming from. I have a 6 1/2 yr old son who will be going into first grade next year. He was officially diagnosed with Aspergers at 5, although he got the diagnosis of "probability" at 2 1/2. I will tell you there is some things on youtube that you should watch that are people talking about how they feel that have Aspergers, that helped me to understand it better. Also I am a special ed teacher who specializes in autism spectrum.
He probably doesn't completely realize your brother acting "normal" because they are very egocentric in thinking. He will have a hard time seeing things from another person's point of view. In a way this is good because he won't completely realize he's "different" or that he doesn't have "friends". My son has what he considers to be best friends, one has Aspergers as well & that's an interesting thing to watch. He is completely happy to play parallel or watch others & doesn't think he lacks in friends. And I was worried about how other kids would think of him since he doesn't act the same or "play" like they do, but they all love him! He prefers adults to talk to & has superior language skills.
For communicating it's going to be harder for him to just randomly talk about what you want to talk about unless it's something he really likes, because honestly he's not going to be interested. Like I said very egocentric, they tend to think only about what they like & think everyone else should/does feel the same way or they are just completely unconcerned how others feel. And don't make him make eye contact, this can actually be painful for them. And as I've heard it put before from an Aspie "I can look and not hear you, or hear you and not look at you, but I cannot do both." He does need to be getting specific help for this in school though through what is called "scripting" or "social stories". The scripting teaches him how to appropriately have a 2-way conversation with others about things that he is not obsessed with. And social stories teach him how to act in any situation he needs help in from how to handle melt-downs to how to go to the dentist to field trips, ect. They are the best things ever!
Also Aspies tend to be very smart & it is extremely important that his school is teaching him at his academic level. This will help lower stress and help him have a smoother day. He should have an IEP that this would be addressed in. Also his school should be aware that he will have sensory needs that should be addressed properly to help him.
Also, he will have bad times/moments/days because this is part of Aspies. But sensory & the school providing support should help. Also important to know that Aspies have a higher rate of developing anxiety disorder & depression. These can be limited through proper supports. A big thing: Pictures, pictures, pictures! Visual, visual, visual! Aspies are very visual. They need schedules that are routine & pictures/words that tell them what their day will look like or what is coming next. First do this/then get(or do) this is a big thing too (Know as First/Then). Timers help, this lets them visually see how much time they have to do something they don't like, or get to do something they do. No surprises when something will be finished. Gosh there is so much more that helps, I could write a book on the things my son uses/does to help him. And the school has to do things (by law) otherwise he will never have a smooth time.

[Alaska]

Jen! That was a great post with lots of good info. I don't know a whole lot about Asperger's, but I recently learned something that I thought was pretty cool. There is a guy that will graduate medical school next year with Asperger's. I worked with him, and I will admit that I noticed he was a little quirky, but I didn't realize what the deal was until someone else told me. He functions very well, obviously. I just thought his story was very encouraging.

[justjen]

Thanks! I have a neat story too. Everyone knows Aerosmith & they are famous for their pyrotechnics right? Well the guy that developed all those for them has Aspergers. As a kid the school kinda discouraged his obsession with fire, ect. But his obsession was turned into a great career! Aspergers are known for taking some of their obsessions & going far with them. And they usually turn out to be very successful in life, although most get into fields where they don't have to work with many people. Look at those with autism like Temple Grandin & how she used her autism to power her on & do things that no one else could & now she's famous as well. I'm a fan of "using their autism against them" as well. What I mean by that is like kids with Aspergers are very "rule based", so my son is told "its the rule" or "the rule is" now sometimes I have to explain why, but he follows it 99% of the time, even if he has an oppositional come back for it lol.

[Miss Sunflower]

Jen, thank you for responding! I have not checked to see if anyone responded to this in awhile.


Apparently the doctor is now saying that he does not have Asperger's, instead he has really bad anxiety. It is very frustrating. Because of this, he won't get an IEP. ARGH! He needs an IEP.

Reilly is aware that people make fun of him, and it upsets him. He is really big on people being "mean to him." He hates school, because of this. My mom started him on a program to reverse the enco, and he seems to be doing much, much better. He is far more relaxed, and happier in general. However, he is still very impulsive, and has a hard time listening.

Everything that you suggested sounds like it could help, but because of his changed diagnosis, I do not think he will be receiving that kind of help. In fact, besides the treatment for the enco, I don't think that he will be receiving any other kind of help. =[ I honestly think that my mom just doesn't want there to be anything wrong with him.

[justjen]

Sorry about the change in diagnosis. I had to go through things with my son. At 2 1/2 he got a "strong probability of Aspergers" because they didn't want to put a label on a kid that young who wasn't severe. Then at 3 he was retested through the school (basically just a language test, motor skills, & checklist) & they said he didn't meet criteria for Autism Spectrum because he had "made too many improvements." Well then at 5 I insisted that he get the full work up ( a test called ADOS) & it came back he qualified for Aspergers. He hasn't had a medical diagnosis (through a DR) yet, just the educational one done through the school. If your mom doesn't want to see anything being "wrong" with him then it will make it a lot harder to get the help he needs. Best of luck to you & him with the school situation.

[Miss Sunflower]

I am so worried about this. Thank you for responding.

[eg]

he should be able to get a plan for extreme anxiety....the key would be getting your mom to talk to his doctor about it and usually the doc will write a letter or something to the school to work up a plan...anything that impaires his ability to learn should be considered when teaching him and anxiety surely will do that You are a wonderful sister and I totally understand your concern....I hate to think that your mom is neglecting his well being like this ((((hugs)))))