autism · Lexi is helpful · memes · soapbox

Mediocrity.

Standing out at the park I listen as the very rich soccer moms one up each other using their kids as the ladder. It sounds a little something like this:

 Mikey started reading when he was three! I mean, really, he’s very very smart.
Well my Jilly can recite Pi to the 1,000th place.
My fetus has already been accepted to Einstein Academy Preschool!

 

I walk by with Abby and they all swoon over her cuteness. They love on her and tell her she’s so cute and then all look at me like, “Wow! Better you than me!” We talk for a little while. One of them informs me that Casey stuck his little container with monarch caterpillars RIGHT in her face and then spent 20 minutes talking about the whole life cycle. “He’s very smart,” she says, willing me to climb on their ladder, if for no other reason than she wants me to say something she can one-up.

Just to stop that crazy train, I did something I don’t actually do too often. I said, “He sure is, and he’s autistic.” I let them chew on that for a minute. One plus one is a pretty simple equation, but it usually takes people a little bit to put it together that yes, I have a child with autism and a child with Down syndrome. I hate that moment. I hate that I know that, 9 times out of 10, that person is probably on the verge of pitying me.

Because this is their worst-case scenario. At least, in their heads it is. But what you don’t see until you’re in the Special Needs world, is that the batshit crazy one-upping soccer moms exist there, too. I’ll be dammed if I don’t know A LOT of parents with special needs that got the diagnosis of their child and thought, “well then, I’m going to make him the best damn child with (autism/Down syndrome/Cerebral Palsy/Eczema/etc) there ever was! WAY BETTER THAN YOUR SN CHILD!”

Which is totally great. All parents should shoot for the moon with their kids. They really should. And all kids should be proud of their parents’ accomplishments.  And all parents, in the end, should just be okay with the fact that no matter what they do, their kid is probably going to end up being mediocre.

I said it. There’s a good chance your child isn’t going to be in the NBA or a member of Mensa. There’s a good chance that everything you’re doing right now is going to make your kid the smartest damn kindergartener ever…and the most bored.

One time at a family function when Carter was 2, he put a bowl over his head and ran head first into a wall. He fell backwards and laughed hysterically. My sister, who is quite possibly the funniest person I know, patted him on his head as she walked by and said, “…but you will be good at sports…” as a jab to the fact that he probably wasn’t going to be the smartest kid in his non-prenatal-acceptance-receiving preschool.  And you know what? He’s in third grade now and….drum roll please….he’s an average student! Yay! Average! And, he’s fantastic at sports. He might even play in the NBA.

But probably not.

What am I getting at here? To give up? To not push like crazy to do what you think is best for your kids? Nope. Just a simple reminder that it’s not about you. Your child’s accomplishments will never make up for what you didn’t do in your life, they’ll never make you taller than your dad, and they’ll never really impress the person you’re trying to “one-up” because either they’re not listening to you because they are trying to think of their next ladder rung, or, they don’t give a damn because they’re secure enough to see how completely insecure you are.

And I’m not saying that you don’t get all excited when something super fantastic happens. You can call everyone. But no one calls everyone, so you can TEXT everyone. Tear up every social network. Because accomplishments in any sphere of parenting are what keep us going when everything else super sucks. But there’s a difference between you telling someone to praise YOUR KID and you telling someone to PRAISE YOURSELF.

Just try not to be too disappointed the first time your child comes home with a “B”. When your son with Asperger’s doesn’t end up creating a social network. When your daughter doesn’t win the pageant you should have never entered her in because it’s creepy. Realize that we want our kids to do their best in whatever arena of life they enter into, not your best. If they are happy and challenged and impossibly mediocre, good for you. You’re normal.

…unless you’re still hearing voices.

 

autism · soapbox

Autism, ADHD, Aggression and Medicine

Update Feb. 2, 2013: I’ve had three emails this week about medication and autism. I’d work on a better, more concise post about meds, but my DVR is running out of space and that situation needs to be handled immediately. So here’s my post on the subject from last year. If you have any resources you’d like to share, or blog posts of your own (Pro-medications or not, I’m open to all experiences) I would greatly appreciate it and will incorporate it all into a future post.

RAGE

Casey used to rage. He still does, but nothing like it was. When he was four, things were getting unmanageable. He’d rage for hours. He’d scream, he’d kick, bite, slap, punch and throw things at anyone who came within his reach. We tried everything. Every behavior modification technique I had learned in my psychology courses. I read. And read. And read. But every technique we tried only seemed to infuriate him more. Finally, our only resort was to clean out his room except for his bed. But even that, in one particularly bad rage, didn’t work. He ripped off the metal scrolls off of his bed.You can see it in the picture. We should have also gotten rid of those curtains before he did.

For years the teachers and paras at Casey’s preschool told me that we should put him on ADHD medicine. I refused.  I wasn’t going to drug my kid just to make their lives easier. I thought then that ADHD was entirely over-diagnosed. He was just busy. And he was autistic. His older brother, Carter, is incredibly “busy”. Always has been. We would use behavioral techniques because psychology combined with prayer can do anything, right?

Nope. It became clearer to me as time went on that Casey just. could. not. stay. still.  Not ever. There were too many things going on. Even when he slept his body couldn’t quit moving. And sleep was RARE.  So I gave in and had him tested. His teachers, his speech therapist and his dad and I filled out questionnaires. He had ADHD, and not just a little bit. It’s hard to see where the line between autism and ADHD is…if there even is one. For Casey, the ADHD was  something we could treat.

We tried out several medicines, monkeyed with the dosing until we got to the one we’re on now- vyvanse. Each kid is different. It sucks that you have to experiment on them, but it’s the only way to get to a good, even dose (update 2/13: there’s new genetic testing that can help determine which kind of ADHD medicine will help your child the most. It’s new, but most insurances cover it…post forthcoming).  At the same time, we put him on a sleep aid. We had tried melatonin in all it’s variety for months before. It helped for the first few hours, but didn’t last. He was usually up for the day between 3:30 and 4, after getting up during the night a half a dozen times. We put him on Trazadone. Trazadone doesn’t help him fall asleep so much as it helps him STAY asleep.

The difference was night and day. He could sit! He never could just SIT. We had never been able to sit through even the first fifteen minutes of church before I had to take Casey to the hall. I thought it was all the autism’s fault. It wasn’t. From that point, he really blossomed academically.  He started to read! The sleep was helping a bunch, too. He wasn’t so irritable. It was a Godsend.

But the aggressive behavior continued. It wasn’t horrible all of the time. Casey cycles. He would have a couple of bad weeks, then a couple of really good weeks. But by six, one of his cycles stopped seeming like a cycle and started seeming like a new normal. Something in him had changed. He was throwing desks at the other students. He punched his teacher in the face. And his aid. And the recess lady. I was going to his school every single day, usually to bring him home because there was nothing more they could do. He was a danger to himself and to others and they did not have the manpower to care for him.

Neither did I. Abby wasn’t yet six months old. She had her own serious health issues. I worried for her and the other boys’ safety. I worried about Casey. I knew he didn’t want to act like that. He’s a good, sweet hearted love of a boy. I knew he wasn’t happy. He just couldn’t control it. I ached for him. For the pain and turmoil he was feeling. I didn’t want him to feel like that anymore.

We took him to the Seattle Childrens Hospital Autism Center. They tried Guanfacine first. Guafacine is a blood pressure medicine. It’s off-label use is for children with issues such as Casey’s. It started to help a little, but as we had to increase the dose, he started getting headaches. We came to find his blood pressure was dropping too low. They suggested respiradone.

This to me was the mother of all scary drugs that I did NOT want to give my child. I thoroughly researched it. Years before I went to an autism convention and heard a lecture by one a neuropsychologist who was doing research into the drug. This was when Casey was four and was so aggressive. I spoke with him at length after about Casey.  He said that Casey’s form of autism responds very well to the drug and we should really consider it. I kept going back to that conversation. The doctor had given me his email and we had written back and forth over the years. He sent me literature that showed how much it had helped.

And I believed him. I didn’t doubt that there was a chance it could really help. It was the side effects that I was afraid of. I watched the PBS Frontline program called “The Medicated Child” and it scared me even worse. I knew very well that Casey’s brain was not completely formed and I was scared of what powerful drugs would do to it.

Respiradone is an anti-psychotic. It was first used to treat schizophrenia. Studies were done that found that it was hugely successful in treating aggression in children with autism.  We felt like there was no other choice. After a lot of prayer and a LOT of tears, I gave in.

And it’s changed his entire life.

Casey is mainstreamed this year with the help of his fantastic  teachers. He could have never been in a regular class without these medications. He still has his rages, but they are rarely violent. He’s able to control himself, mostly. It also has the side affect that it makes him hungry- which is good because the AD/HD medicine makes him not. He’s been able to maintain his weight. He still looks like a “stick figure” (in his own words), but we’re not worried about weight loss any longer.

I’m not sure what the future holds medicinally for Casey. We tried to take him off the Repiradone this summer (sort of because we didn’t have a prescription as we were traveling across the country…). It did not go well. I think I sort of hoped that his aggressive behavior was just a stage and that we were through it. But I think more now it’s a symptom of his autism.  I don’t want him to be on medicine forever. But I don’t think I’m against it, either. Not when I see what kind of good comes from it.

If you are having aggression issues with your child, it may be something to look into. This is just our story. Make sure you understand the risks involved and weigh those before making such a decision. But after hearing stories of families calling 911 because they were afraid of their 7 year old, I figured it was time I say something about the medicines. It doesn’t work for everyone. But it could work for your child.

soapbox

My soapbox

My Soapbox?

Okay, so I’ve had a couple of people ask me how I ‘get’ lance to do everything he does. The simple answer (and probably the only answer) is: I married well. Lance is soooo good to me. He comes from a family that serves each other. His Mom’s life revolved around doing what was (and is) best for her kids. She and her husband (if he wasn’t coaching the games) drove all over Utah and much of the west going to basketball games. There was rarely an excuse for missing a game. She’s amazing. His dad is much the same way. He’s very quiet about his services, but it’s what he does. They brought all the siblings to the games as well. Now the siblings go to all the games they can even though every one is in a very different stage of their life. Lance is mellow. He won’t fight with me. That cuts a lot of the pettiness right out because he doesn’t put up with it. I don’t know what it’s like to live with a husband that is demanding, mean, absent, or cold. So I can’t talk about that part of a relationship or how to deal with it. What I can talk about is what works with ME in My relationship with MY husband. Your relationship is very different. I’m not pretending to know what will work for it.

Okay, just kidding. I totally am.

The rest of this is probably crap. But here goes.

I was fortunate to take a psychology class right after we got married about families. We talked a lot about husband/wife relationship related to behavioral psychology. Here’s basically how it goes: Say your husband cleans the kitchen. But he doesn’t clean the sink. You focus on the sink, he’s never going to clean the kitchen again. He does the laundry, you redo it, he’s not doing the laundry again. People don’t repeat many things that they aren’t in some way rewarded for (with the clear exception of wives and moms who do clean all day every day and never have a clean house- that leads to a cycle termed “learned helplessness,” of which I’m quite fond) . So here’s what I do:

If Lance cleans anything I immediately thank him. BIG. I never, ever, say “you didn’t do the pots and pans (he never does) or clean out the sink”. I never re-do anything he’s done where he’ll notice it. Yes, it means going to bed with a yucky sink or quietly doing the pans, but it’s okay.

You’ve got to act like you expect nothing. Really. So anytime he does anything, you make a big deal. He’ll do more. I guarantee it. I think as wives, we don’t really think that our husbands need the same encouragement and flattery that we so much want for ourselves. I NEVER thought that Lance needed anything like that because the guy is so confident and so…well…lance. But then we read that love languages book together and much to my surprise, Lance’s love language wasn’t physical touch (though it came in a close second) it was words of affirmation. Really? Lance? But it WORKS. Try it this week. Don’t criticize ANYTHING. Nothing. Only thank them for what they DO do- even if he doesn’t do anything more than go to work every day- it’s something. Build on that. Say, “Thank you for working so hard every day so that I (fill in the blank or…) can stay at home with the kids” NOT “I wish I could get out of this damn house and do something I CHOOSE to do instead of all the grossness that comes with raising three bad aimed little boys”.

Along with that, be complimentary. We expect our husbands to tell us we look nice and ‘no that dress doesn’t make your ankles look humungous’ but I know I don’t do a lot of it back. It’s not something that comes naturally for me- the whole complimenting thing (that’s how you know if I say something nice to you I actually mean it). Tell your husband that he looks hot in the brand new Aggies hat that his dad sent (have you seen Lance in that hat? Mmmmmm boy). Tell him how much you love it when he tells the kids stories or wrestles with them on the trampoline. Don’t yell at him for breaking your son’s arm just days into summer break.

Let him watch/play sports, video games read or whatever it is that he does to decompress. Men need this every bit as much as we do, believe it or not. Don’t do it begrudgingly. It’s kind of like fasting, if you fast and hate every minute of it, it doesn’t really do what it’s intended. Last night there were two football games he was watching. I wanted to be with him, but I could care less about football so I got my book, curled up next to him on the couch and read while he yelled at the TV. I’m not saying that your husband should spend hours and hours doing those things- he shouldn’t. There’s got to be moderation, too.

Don’t say ‘no’ if you mean ‘yes’ or visa versa. I did this so much and it’s SO wrong. “Fine, go with your friends, I don’t care” so he goes and you get really pissed “But you said I could go” “you knew that I didn’t want you to” “huh?” With my husband at least, I say what I mean and mean what I say. Don’t go digging around for reasons to get mad. It’s destructive. You know how I know about that phenomenon? I invented it. I used to look for reasons to get mad (I would like to believe it was all subconsciously) so that I could use the leverage to go shopping or something. It’s no good. It doesn’t get you anywhere but angry and, in my case, debt. Just stop it. Right now. Along those same lines, don’t expect your husband to read your mind. If you want him to clean a little while you’re gone, ask him. Be specific. Ask nicely. “Lance, would you mind taking out the garbage while I’m gone? Thank you so much!” If he doesn’t do it while you’re gone, you do it. In front of him. Don’t say anything. He’ll get the point. Anger is a lot easier for a guy to deal with than hurt. You yell at him, he can be mad at you. You do it yourself, he can be mad at himself. Or just leave it until it runneth over. That one works for me, too. I guarantee you that your husband will respond to praise way more than he will to anger. Being mad at him for not doing something will not work.

Choose your battles. Is it worth the fight? Is it worth marital discord? Really? So many things aren’t. I’ve sat in the room and watched a husband and wife bicker over the dumbest things. Learn to hold your tongue. Does this mean get walked over? No. People who know me and Lance will definitely tell you I am not a doormat (though it would be nice to be thin like one…). There’s a good amount of give and take. There should be. Don’t let things fester either. If your upset about something REAL (and there are a lot of good times to be upset about things…) TALK about it. Don’t accuse. Don’t attack. Say how YOU feel and why. Not how he should feel or do and doesn’t. “Lance I haven’t slept in days, I’m bottoming out, would you please take the kids for a little while so I can get some rest” not “I’ve been the one to get up with Casey EVERY DAY at 3 am on top of not sleeping well because I have yet to put a hit out on the bullet bike riders and you just sit here and let them scream and yell while I TRY to get some sleep. You just don’t care!” see the difference? Also, I have ordered the hit, I’m glad this reminded me.

Have fun with your husband. So many people tell me that the first year is the hardest, and maybe it was because I was so young, but the first year was one of the best. They’ve kept on getting better. We have fun with each other. We leave the dishes in the sink, clear a spot in the toys to sit down and play games with each other. We laugh. We talk politics. I hate politics. But Lance loves it, so I try to keep up. We hold hands when we walk and we always sit next to each other when we watch tv or movies. We make out. We gross the kids out.

Okay, so go ahead and read the part again before I said the rest of this is crap. I mean it. I lucked out. I have a good husband who is so laid back that it doesn’t bother him that I’m lazy and a terrible homemaker. I hate preaching. I don’t know why I’ve gone so far as to do it. Meh. All I know is that the person I can control in my relationship is me. So I nap.

Now any one of you out there can write an essay on how I can be a better mom, really, or better at organizing my time, my house etc. You could write an essay on being a really great friend and putting up with your quirky (let’s call me quirky, okay?) friend who’s just a hop skip and jump away from being completely nuts.

Please, for the love, make fun of me for this. I deserve it.