Aspergers - Opening A Dialogue

I've been thinking about this for a while. There are a lot of books about aspergers syndrome from doctor's points-of-view. There are books by parents that are about life on the spectrum. But there are very few books that relay helpful information to people who are struggling in a practical "mom's advice" kind of way.

The problem is that each kid is different - when they call it a spectrum, they're not kidding - and what works for some doesn't work for all. But wouldn't it be awesome if there was a book that defined issues kids/teens/adults with aspergers struggle with and lists of what has worked from the viewpoint of either parents or the people aspergers themselves?

My son's psychologist has been recommending that my son and I write this kind of book. We've been with him for close to 10 years and he's been an amazing help. He thinks my son has a very unique understanding of his own brain and how it differs from others. In fact, in the last year or so, the psychologist will sometimes present my son with a situation another patient is having and ask if he can explain how his brain would interpret it. My son always has an amazingly complex answer that helps.

I have a degree in communication, specializing in journalism. I write fiction for entertainment, but writing a book about our lives has always been sitting on the back burner in my mind. But I felt that another 'poor us' book wasn't anything I wanted to do. Helpful suggestions and tips, tho, that interests me.

But in order to do it properly, I'm going to need to get tips that work from other parents on a number of things. Because I can talk about sensory issues, theory of mind, proprioreception, medication, school issues, therapies, etc. and what worked for us. But in the end what works for us won't work for everyone. The more ideas I can convey, the better and more useful the book would be.

Is there anyone out there that would be willing to have their brain picked? If you were a parent, I would be looking for things like what worked for you and what didn't if your kid had difficulty learning to ride a bike; if your kid was having math difficulties; if your kid was sensitive to sound...that sort of thing.

And for people on the spectrum, I would be looking for most of the same things, but in addition, I would be looking for any insight into how your brain processes situations to help parents, teachers, doctors, etc to understand your struggles.

So....anyone out there want to chat?

Sunshine and Happiness

Today is the third day in a row where the temperature has crept over 80 degrees. In fact, we broke the record for warm temperatures today by 10 degrees. For the last three days, I have basked in the sun on my deck. I don't care that the outdoor furniture is still locked up for 2-3 months. I've thrown myself down on the hard wooden deck and played sun bunny. I'm in shorts and a tank top, my bare feet decorated with purple nail polish.

Last night, we left the windows open. Yes, it was so warm in the house we had to let the heat out. The smell of warm dirt and warmer winds comforted me all night.

For people who live in perpetual warm temperatures, I'm sure this is no big deal. But I live in Massachusetts, where the temperature should be high 40's this time of year, and still dipping into the freezing zone at night. There should be snow on the ground and a bite in the air.

You'll hear no complaints from me over this bizarre and desperately needed weather. I'm not a fan of winter despite growing up in northern New England. Winter makes me sad. But the last three days have renewed me. I feel like I can tackle things again. I feel like I can get my feet back under me. And that's a very good thing.

Finding Balance or Maybe Losing It (OMG-A Pun)

Today was our second visit with the new psychiatrist to try to sort out meds. Kiddo is on several things - risperdal for the inflexible thinking/obsessive component of aspergers & ativan for clinical anxiety. We parted ways with the previous psychiatrist when she refused to address the depression that plagues him. She kept trying to put him on strange meds for seizures that shut his brain down. And by shut it down, I mean he couldn't form sentences, couldn't concentrate to program (his favorite thing), couldn't process anything but the simplest of instructions, couldn't eat, sleep or show emotion. She felt that was a good trade off to control the depression. We did not agree.

Now, I feel I need to inject here that I firmly believe that medication should be the last resort. But someone needs a med for heart issues, you would give it to them. If someone was deaf, you would give them hearing aids. And if someone needs a med to control brain function, you give it to them. And medication is a route that has been necessary for kiddo, who would have likely killed himself at 10 years old.

Kiddo was taking Abilify, which is a nifty little drug that is similar to risperdal, except it does help with some aspects of depression. This would have been the miracle drug we were looking for except that kiddo experienced one major side effect. When he reached the proper dose, he couldn't eat. Everything he ate, he threw up. He dropped 20 lbs. in less than 3 wks. (3 wks. of constant vomiting) so we backed off the medication until he was taking a dosage that shouldn't have been doing anything according to the old pschiatrist. And still, some days even with that low dose and a prescription stomach med, he can't eat anything without praying to the porcelain god.

Well, the new psych pulled him off the Abilify and put him on a depression med (finally) Celexa. Only either the loss of the abilify or the introduction of the Celexa has caused him to swing into a bout of severe depression (the glass is not only half empty, you might as well just dump the rest & throw out the glass - and what's the point anyway). Yeah. Not good.

So now we've dropped the Celexa & we're adding back the Abilify for a week, then weaning him off it slowly to see if he improves/goes back on a downward spiral. If not, then we know it was caused the Celexa and we try something else. Meds for brain issues, you see, are a crap shoot. What works for one person may not work for another - and kiddo is wired very differently.

I don't know how long it will take to find the right balance of meds. I hope it won't be too long for his sake. (And for mine.)

In the meantime, I'm going to be the drill sargent of happy thoughts and fun. Oh yeah, you don't want to be around me when I'm Suzy Sunshine. I play happy 60's-80's music on the radio like the Monkees, Abba & the Bangles. I sing instead of talk. I break into spontaneous dance. I make a spectacle out of myself for a laugh. I am downright fucking scary.

(It is totally against my emo nature...but I've become very good at it. Now what should I sing first??....)

Platitudes ... A Venomous Vent (aka welcome to my pity party)

I have three phrases that I use to get through my days:

1. There but for the grace of God, go I.
2. That which doesn't kill you makes you stronger. (But it still sucks ass.)
3. This too shall pass.

They are my personal mantra, if you will - how I survive the worst of times - my platitudes to make things more bearable. I can live with these platitudes. The first is easy to understand, because honestly - as bad as my life gets, someone always has it worse. The second - its plain truth. If you can keep moving, you're alive, even if you don't want to be. And the third - another easy one to understand. It can only get so bad before something breaks and things improve. These are truths I can live with. What can't I live with?

People who say "He's so lucky to have you as a mother" or "God knew what he was doing when He made you his mother." What?? They're fucking kidding, right?

First off, growing up I said I was never going to get married or have kids. In fact, I told people that if I ever did get married, it would be in a black gown because it would be my funeral. (Guess I should have listened to myself.) My goal in life? To be free to do what I wanted. To not have to answer to anybody. Ever. I don't like responsibility. I have very little patience. I'm easily frustrated. I hate dealing with other people's issues (be it a cold or a case of the whinys). And I suffer from fairly profound depression, not to mention social anxiety. My depression has run the gamut from mild "life sucks and then you die" to "drive your car into a tree right now and get it over with already". I read the fucking obituaries daily for entertainment to see who died and how. My house looks like the beginning of a hoarder's secret fantasy, and 90% of the time I'm too overwhelmed to deal with it. I get annoyed at everything. How in God's name does that make me good parenting material? Never mind good parenting material for a kid with Aspergers?

You know what I wish people would say when I'm struggling? "I'm sorry. What can I do to help?" Or, how about, "Hey, let me take him for an afternoon. You go do something fun." I don't need to be told what an amazing person I am dealing with all this shit. I have no choice! I may never ever hold a job again, other than caring full time 24/7 for my kid. But I hate that ridiculous crap that comes out of their mouths. "God bless you, you're a wonderful mother" my ass.

Worse, people who tell me how glad they are that they don't have to deal with it (and believe me, this is family and friends, people). I don't want to hear how much you don't want to trade places with me. I don't need you to remind me how much my life sucks. I'm fucking living it.

And worse, my poor kiddo, who doesn't even know that other kids go hang out or spend overnights or weekends with relatives and friends. He's never spent any time away from me. He's fucking 17! His aunts have my niece over for weekends. My parents take her places all the time, buy her things, spoil her rotten. She gets phone calls and special gifts and fun times. He gets nothing. All he knows is that he's alone-  other than me. Even his own father has no tolerance for him. No friends. No family that cares about him.

I visited my parents once last year. Once. Why? Because he's aware enough to notice the way he's treated. It hurts him. And what hurts him, hurts me. (God, I hope no one I know reads this... and if they do, they understand that I don't fault them. I just wouldn't do that myself.)

As for the in-laws....oh hell, I'm not even going there. Let's just say I've been told that all of his issues can be laid right at my feet and he wouldn't have Aspergers if I was a better parent. Like Aspergers isn't a disability that runs in their fucking family, along with anxiety, depression and OCD. They do at least make an effort to be nice to him ... until his Aspergers comes into play. And then the comments begin, directed at me. I beat myself up enough for my legitimate failures. I don't need to be kicked in the teeth for failures that genetics put into play.

So today I'm sulking. And I'm venting. And I'm wishing that life was a little nicer and didn't suck so much. And I'm hoping that this ugly angry bout of depression too will pass...