Sunday, January 30, 2011

Should You Tell Your Child They Have Asperger's?

The years are going by. MJ just had his 11th birthday.
Next fall he will be starting Junior High School.
He's not a little kid anymore.

So, when should we really sit down and have the "You Have Asperger's" talk? Or should we?

OK, now as MJ was first diagnosed with Asperger's when he was 7 years old, he knew something was up. I'm not sure he knew or understood what that something was, but he knew. We've never necessarily hidden anything from him, although I have often chose to talk with teachers and doctors without him in the room as to not make him feel awkward. But, as he has gotten older, I slowly started making him aware that he was a little bit "different".

It seems weird that I am saying this, but thank goodness my husband has Asperger's so that I can somehow connect someone else to him and he can see that it's not some death sentence or anything. About the time MJ was 9 years old I started telling him how his brain was "wired differently than other people". He knows the word Asperger's Syndrome, but the way I explain it to him is that his brain works a little differently and he processes things a bit differently, and there is nothing wrong with it, why his dad has the same thing and thinks the same way and he does OK.

So, this has worked for a while, as we often sit down at the table and have our "Social Teaching Sessions" where I help explain to both my husband and my son what happened during a social event that we just attended that they didn't quite get, or it's where I might explain to them why they were not accepted appropriately or they didn't respond the "socially acceptable" way.

Now, really, I love my boys and I honestly cherish many of their Asperger traits, so I will tell them a lot of the social rules are just plain dumb, but it's the way most people do things and it's just something they have to learn, but I never tell them they are bad or wrong exactly, I just try to show them other ways to behave or respond in certain situations and I try to explain what they can do in circumstances where they are probably not going to understand or figure things out. I'll explain more in detail about some of our "tricks" to overcoming social misunderstandings in another post.

However, things have been getting difficult lately. I don't think MJ quite understands what Asperger's is exactly and I don't think he realizes that it is a part of him that isn't going to go away and that he needs to accept it and figure out how he's going to deal with it in life.

But how do you do this? I mean, how do you sit down your kid and tell them there is something "wrong" with them without telling them that there is something wrong. Does that make sense even? I don't think Asperger's is something wrong, and I honestly don't consider it a disability. I have always said it is just a different way of life, but as my husband, an Aspie himself, tells me that it is a disability, yet it is something that can be overcome. He has struggled as a boy growing up always knowing that he was "weird" or something was wrong or different with him. Why didn't kids like him? What was it that he couldn't figure out? He thinks of his Asperger's as a true disability, but it's not something that is going to stop him from succeeding in life. He finds ways everyday to overcome or challenge his Asperger traits. It's like trying to live normal.

Well, I told my husband that I couldn't do it. I'm the one who has been talking this all up for years trying to gently tell my son that he has Asperger's but it's no big deal because Daddy does too, and they are both just different, but I don't think he is getting it all the way. He knows he has different struggles that other kids don't, but then much of the time I think he may even think it is just funny the mistakes he makes. Who knows, but I told my husband that he needed to be the one to talk to him. It wouldn't be right coming from me. If anyone was going to sit down and truly tell another person that they have this syndrome, or this disability, wouldn't it be best coming from someone else who has lived with it all their life and really understands what it means and how it affects their life?

So, as I'm typing up this blog, my dear Aspie husband is downstairs having a heart to heart with my sweet, talented 11 year old son who also has Asperger's. Yet, this may be the first time he really hears everything it entails.

Tuesday, January 18, 2011

5 Hours of Homework!? Searching for a Better Plan for Help with Aspergers

Things had been working out pretty well for MJ. His 504 Plan seemed to be working and he had a PDA that he remembered most of the time, and mostly he was excelling in school. On occasion there would be a few missed things that he forgot to finish or take to school because he hadn't programmed them into his PDA, but over all it seemed like he was getting all his work taken care of and he was getting good grades.

MJ has actually become a pretty responsible kid. I believe a lot of it has to do with routine and expectations. He has a set of "jobs" that he is responsible for everyday before he is allowed to play on the computer. His "jobs" consist of:

1-clean room
2-do homework
3-unload the dishwasher
4-practice guitar

Nothing too major I believe. He is very good about getting them all done each day and then having time to spare. However, on a recent Monday everything was different.

Usually it takes him a half hour to do his homework which is normally just some spelling practice and occasionally a math worksheet he didn't finish in school. But on this particular day, for some reason he had a lot more homework than usual.

I set him off to do his homework, and a couple hours later I was surprised that he was still working on it. Had he been playing around? Distracted? Reading?
He was actually working straight for 2 hours. So I asked him what he was doing, and he began telling me all the things he had for homework that night. He said not only did he have his regular spelling work, but he also had to do math homework out of his book, and then he had to finish 5 different reading/language segments out of his book which involved 5 different pages of essay questions, and then he had to finish some packet and also write what he called a "myth story".

Woh. How could he have so much work all of the sudden?

Now, knowing MJ, I figure he must have not finished these assignments in class because it is often that he doesn't finish, but usually he brings things home on and off and gets them done throughout the school year. Usually it is just a page or two in different subjects, but nothing like this. Something must be up, but what?

MJ tells me it is the end of the quarter this week and he has to finish all of his assignments by tomorrow. Still, this seemed like quite a lot, and as he continued doing his homework for the next 3 hours, I felt terrible as he struggled to finish while tears rolled down his face.

MJ has a very good teacher and she is very considerate and helpful and works with him very well, so I decided to send her an email about my concerns. She quickly emailed me back and gave me a call.

What came out was that they had this sort of deal. She was very accommodating and followed his 504 Plan well. She allowed him extra time to finish his assignments whether that mean in class, or to be taken home to finish later. While most kids turned in their work that day, she would tell MJ that he could finish it later and just turn it in whenever he was done.

That was the problem. A non-literal, direct bit of communication that doesn't seem like much, but to MJ it meant he didn't need to finish that work that same day, just whenever and then turn it in when he was done.

Now sooo sad that my kids are such procrastinators (well at least he did get around to it finally), but MJ would have never thought to bring home his assignments each night to finish because she had told him it didn't matter when just as long as he turned it in as he finished before the quarter ended. Poor MJ can't process this too well and unless a person tells him he needs to do this "NOW" or a more specific time frame, then he will more than likely not do it until it is actually due.

His teacher felt really bad that he had been doing nothing but homework for 5 hours, and I felt bad too, but he did need to get it done (although his teacher said he still had until the end of the week), but something was not working here.

Dang that PDA---MJ had run out the battery and it had erased all his programs and so he hadn't been using it for the last many weeks. Was this the problem too?

There is so much that can be overcome with Asperger's with technology, but what happens when technology dies, or runs out of batteries? MJ does so well with routines in fulfilling his responsibilities, but we need to possibly incorporate future and daily planning into his routine as well. He can't always assume there is going to be a deadline for all his work in life, and if there is not, is he going to be able to do his work without his boss or teacher saying "you must do this NOW" to direct him? I do not know. It is frustrating how literal an Aspie must be, and I wonder if he will grow and mature to figure things out more in life.

I look at my husband and see so many times still that he does not get things or understand what people have meant to say. His work is all deadlines, thank goodness, he uses his phone as a constant beeper/alarm to remind him when he needs to do things, but it is still not full proof. It is often he gets behind or misses programming something in there. Maybe it will be a struggle for MJ as the years go on. We need to figure out a better plan.