That would be much appreciated! Thanks!
J wrote this out for you, and I'll interject a few of my own comments in parenthesis and italics,
(like this). We both got a little verbose in our answers, sorry about that! I hope that it's helpful.
"Thank you for giving me an opportunity to answer those questions for you I'm always open to any more.
And before I start, I want to make it clear that I mean no offense to any parents who may do things differently than I think is ideal. Everyone does what they think is best. I'm just giving my opinion on my own experience with Asperger's. Hopefull it will help.
I was not formally diagnosed with Asperger's until much later in life. But, I was diagnosed with a ton of other problems that, all wrapped up, equalled Asperger's. I'll start with the positive things my mother did for me. She was a huge advocate for me at school. I didn't even realize the things she was doing for me until I reflected on them as an adult. I was in speech from the second day of kindergarten onward, and when certain things caused me trouble (I still cannot tumble, cartwheel, or flip over a bar) she would insist that after whatever evaluations they were performing on all of the kids were done that I be left alone about it. I grip my pencils improperly, and the teachers forced that issue until I resisted handwriting. My mother bought pencil grips to avoid the callouses on my hand and said that was enough of that matter. Oddly enough, I have managed to function just fine as an adult without tumbling and my handwriting has never been called messy."
(he has the most perfectly neat handwriting I've ever seen)
"She made certain I was tested for the gifted and talented program via verbal testing, instead of the usual written test, and when there were teacher conferences (in 3rd grade I, a Jew, wrote a graphic story about the cruxifiction when asked to do a paper on my favorite part of Easter) she did not blow it out of proportion. She did, however, make me rewrite my 5th grade paper on "What I want to give the world for Christmas." My original answer was truthful. "I want to give the world a second chance because we have messed it all up with all of the wars and death and dying, etc." It turned into "I would like to give the world a Coke." She still has both. My whole point in this is she knew which battles to fight, and how to fight them, so that I got both a good education and to be ME. It worked. I graduated from Duke University."
(May I also interject, he is smart as all get-out. I have been trying to encourage him to go back to school to pursue something he's been talking about for as long as I've known him- his masters and doctorate.)
"She bought me books, fostered my love of animals by allowing me to bring in every injured or homeless animal I saw, and let me leave places that were too loud. I am a lot like your daughter. Sounds send me into fits to this day. I just can't process it. My wife can probably tell you enough to fill a book on my fear of thunder and lightning cracks. It's debilitating. While my mother helped me avoid it, my dad did the opposite. He wanted me to be normal. He still wants me to be normal. He would set off firecrackers to help keep me from being a baby.
Which brings me to what I am afraid will offend some. No amount of therapy is going to change how your children think. It just teaches them to pretend they are normal. And while yes, there are times you need to know how to function in society, I think it's crazy to think we should always adapt. The biggest thing I would say is teach your kids to stand up for themselves. Sometimes it's ok to ask someone else to adapt to them. Not every time, but sometimes. A huge example of this is with my medical procedures (I have aplastic anemia and systemic lupus). I did not know I could say how I preferred things. Once I learned I could ask them to adapt, they did, and it works better for all of us."
(I want to elaborate on this a bit. We are very fortunate in that we have two advocates in the hospital we go to, our closest friends are both radiologists there. They help ensure that some of these things happen. He only sees doctors there that are familiar with him, and how his mind works. Only one nurse is allowed to draw his blood, because she is the only one who knows how to do it without blowing out half a dozen veins. All his procedures are explained in advance, no matter how small or simple. Very easy, simple adjustments that have turned hospital visits from a total nightmare into something routine and easy to accomplish.)
"The caged animal thing is truly how it feels. I literally freeze when I'm in a stressful situations with no way out. Being told I have to do something often causes the same trouble. When possible, give her choices. If something has to be done, allow her input into HOW it can be done. Guidance is important, of course, but mandates stress everyone.
Also, the tantrums are almost never about what is presently happening. Asking leading questions can help. Allow her to talk about it, but start off easily and then dig down. My wife is wonderful at that, so I'll let her give you her tips."
(It took me a while to learn this one. I try to follow a pattern. It doesn't always work, but more often than not it does. I take him someplace quiet, usually into our room. We close the door, sit or lay on the bed, and I talk to him soothingly, and ask a few leading questions while he calms down enough to express himself to me. We talk through the things that are bothering him. It's generally one core issue that may have planted itself days ago, with other little things here and there, that can be ultimately set off by something as seemingly insignificant as knocking over a glass.
The most important thing to remember is, while that tantrum may not be immediately logical to you, once you coax the true source out of your child, it'll all make sense. I'm going to use an example I observed in one of my brothers, who is on the moderate to severe end of the spectrum, a few months ago.
He had a baseball game to go to, and when asked to put on his uniform, he began screaming and crying about how itchy the shirt is, and how he could NOT wear two shirts in spite of the cool weather and the assurance that many other children would be wearing two shirts as well. This progressed to what probably was, to my stepmother, incoherent screaming, but as I listened I picked up on the source. That morning, his brother had been mean, and threatened to break his favorite toy. His other brother had told him that he was bad at baseball and wouldn't be able to play on his own. The fact that the uniform was uncomfortable was just the culmination of two other far more upsetting events earlier in the day, and not really the source of the tantrum at all.
We all experience to a certain extent. We all have days when everything seems to go wrong. The difference being, we have some way to unwind and relax and push it all out. Those on the spectrum typically lack the natural ability to do that. They need to be guided through the process by someone who is patient enough to do so.)
"Schedules. I live by them. I put the most mundane things on them, like "wake up". I like checking things off as I get to them and knowing what's coming next. It literally gets me through the day. I even schedule my free time! Too many things at once makes things "noisy" in my head. By breaking down even the most complex task according to what I think are important steps, I get things done.
I also review social interactions. It helps me figure things out. This is a big thing I'd recommend any parent assist their kids in doing. I may rehash something for days, but once I understand why it happened and how it happened, I can go about thing easier the next time. I struggle the most with people saying one thing and doing another. I do not mean circumstances changing, making what happens change. I mean the lying. Even the little white lies throw me for a loop. If ever I find a way to deal with that, I will let you know.
A word of caution. Meds can be very dangerous, especially when being given for things like adhd. They can make other things, like asperger's, worse. If you, as a parent, feel they are doing nothing, or hurting, stop them. I was recently put on one that made me want to crawl out of my own skin. She can't verbalize that feeling to you yet, so it may come out in other ways. Counseling helps if you get the right one. The wrong ones can be awful. I'll tell you my most recent horror story if you're interested."
(May I say, it's a doozy. It's fortunate I was unable to be present at that appointment, or Dr Goodfornothing would have needed a new nose.)
"I'm always willing to help, so feel free to ask me any questions you would like."
