spectrumom

I spent the day with Nathan. Crying. I wanted Paul to have a day off. He deserves it. Christmas vacation has been a wormhole leading to hell at our house. Nathan has cycled into a special corner of hell called 'bipolar phenotype autism.' This is probably a corner he has occupied for a while, but he has made it his own in the last few months in a new and unique way. And now there is a name for it. Grabbing your brother and biting his back leaving a bruise. Biting your support staff so hard that it leaves tooth marks through 2 layers of clothing. Biting your father hard enough to leave open sores. Biting yourself and leaving bruises from wrist to shoulder. Yes, this is a new level of hell. Not better than the old level. Being with his brothers now sets him off in a very horrible way. So we have spent as much of this vacation as possible with them in separate towns. My mom took the other two, and I took Nathan. And Paul took off on his bike to prevent my mom from getti...

I see these pictures of people attending lavish galas with celebrities. Champagne flowing. Wonderful foods. At least pictures of these things. And I wonder, who are these people? They must not be parents. Because parents of kids with autism are at home with their kids. Most of ones I know don't have people to help watch them while they galavant. They spend most of their money to buy them things they hope will help them. Saving up $400 for an iPad to help their nonverbal child communicate is a huge extravagance to many of the parents I know. Buying a fancy dress or suit and jetting off to NYC is not on their radar. So I wonder who ARE those people in those pictures with the celebrities? Are they researchers? Most of the scientists I know are not in the wage bracket that can buy a $500/plate ticket. They aren't very comfortable in suits. So who is buying those plates? And dresses? And who has the time to be there? They aren't teachers of these kids. I'm snick...

All my adult life have wanted Christmas to be "perfect.". To meet some kind of ideal. Everyone would be happy. I would get gifts that I loved and would show me that people in my life loved me and wanted me to be happy. I hated Christmas. After Sam, my first son, was diagnosed with autism, Christmas developed an even deadlier aura. It became the time that I could make my sons normal. If I bought the right toy, had the right traditions, and went to the right holiday events they would be fixed. I spent a lot of money on that one. Eventually I lost that delusion. Over the years I have managed to lose most of that. But not all. People outside my children continue to disappoint me with their total lack of thoughtfulness. Mostly family. Why I persist in expecting more out of people than they have ever shown any capacity for is my problem. Why a thoughtless gift or disinclination to help us out bothers me after decades of the same makes me wonder about myself. But Christmas has rema...

Every day I try to ask the boys "Best and Worst." What was the one best thing and the one worst thing that happened today? It is a nice, closed-ended way of finding out about their day. It is not that unfathomable "What happened at school today?" that throws every kid (especially autties) into such a loop that all you get is "Nothing." Instead you get the high- (and low-) light of the day. What was most important in a day of (hopefully) mundane-ness. I love this new ritual for a lot of reasons. I love that Sam can do it. I love hearing what is important. I love the insights into Isaac and Sam's day and into their minds. I can't wait until Nathan can do it. Tonight I asked Sam about best and worst. The best was nice, but not particularly remarkable. The worst was much more interesting. Sam had a very hard time getting the words out. First he put them how they came out of his head, which to me was a lot of confusion. But he persisted (wh...

Sam was diagnosed in November 2000. About 3 weeks before Nathan was born. So I hope that shock plus pregnancy hormones explains the terrible thing I did that Christmas. I bought everything. I hoped if we could get him to play with the right toys he would work his way out of autism. I was terrified and I spent money like I was. I bought probably 20 different wooden train engines and track. Who knows what else I bought? I don't remember. It took me years to quit buying gifts with the hope that I could fix him (and then his baby brother.) The right learning toy, the right interaction. And, of course, the right supplements, the right diet, the right behavior program. Fast forward a few years. Sam is always easy to buy for. He has very specific interests, and they change on a slow basis. So I don't run out of things to buy him and it is always easy to figure out. Nathan, not so much. He was hyperactive, random, explored things by breaking them and chewing them into sma...

November marks the anniversary of when the word autism came to live at our house. The day when Sam was labeled forever. The little boy I was carrying in my uterus who was born 3 weeks later would also grown into that label. In spades. Autism helps you to realize how important the little steps are. Yesterday in the car I was thrilled when Sam was able to talk about the best and worst of the day. The best was his grilled cheese sandwich at lunch (it beat out the $14 steak he had for supper. Go figure.) And the worst was me getting lost. I knew it would be, but to talk about his feelings from hours ago. It was a tremendous stride. But, I'm afraid that as hard as I try to avoid wallowing, sometimes the best I can do is label it. "Yeah, I'm wallowing in self-pity today." I was going to take the boys to Krispy Kreme and shopping. That would free Paul up to take a nice long bike ride. But then Nathan began throwing himself on the ground. Winging his iPad across...

Isaac was our gamble. After having 2 boys with autism, we were willing to try again. We knew the odds were higher, but we didn't have a good idea of how high. Those numbers are still debated. Looking back, I'm still not sure what made us take the risk other than part of my grief with autism was that I wouldn't have any more children, and I couldn't let that go. I love being pregnant and I love having babies (well, after they're born. I'm not a fan of the being born part.) So Isaac was created. Just like I'm not quite sure when we knew for sure that Nathan was autistic (although we were sure by the time he was 2), I can't quite say when we were sure that Isaac wasn't. He gained language at maybe a slightly slower than normal pace, but still acceptable on the developmental charts. Raising him has been a joy and a job. Reading to him at night, having him pick out his own books, having a routine (10 kisses, 10 hugs after we turn out the lights),...

Silverware I use silverware. I use forks to eat food like pasta. I use spoons to eat ice cream and cereal. I use knives to cut my food up. Silverware is very useful. Silverware is NOT for banging. I can use drumsticks for banging on the drums. I can use my hands on the table or my chest. But I can not use silverware for banging on the counter or the table or other furniture. When I bang my silverware it makes mom and dad angry. I will try to use my silverware for eating. I will not bang with my silverware.

I am starting puberty. One of the things that happens during puberty is feeling attracted to people. I find I am attracted to girls and want to talk to them. I think they are cute, and I think their bodies are attractive. However, some things are appropriate to say to girls, and some things ARE NOT. If I say things that are NOT appropriate to girls, it will make them feel bad or mad. Or even scared. And I might get in trouble. So it is important to find out the right things to say to girls. And what I shouldn't say to girls. I should not ask girls about sex. Talking about sex makes people feel uncomfortable. Also, sex is private. More private than going to the toilet. I shouldn't talk about going to the toilet in public and I shouldn't talk to people about sex. However, I can talk to my parents about sex when I have any questions. I shouldn't talk to girls about their bodies. People feel uncomfortable talking about their bodies, especially the sexual parts...

Bullying is when someone (the bully) does something to another person (the victim) to hurt him. Bullying might be hurting physically (hurting the body--like hitting or tripping someone) or hurting emotionally (making fun of someone to hurt their feelings or making them afraid.) Bullying is a way to control other people and makes the bully feel strong and powerful. It makes the victim feel powerless and afraid. Bullying is wrong no matter who does it. A bully can be someone you respect, even an adult, like a teacher. Physical bullying is when someone hurts you to make you do what they want. Another way to physically bully someone is to take their things and break them or not give them back. Some people may accidentally break your things, and that is just an accident. But if they did it to hurt you on purpose, that is bullying. Verbal bullying is using words to hurt someone. Making fun of the way you act or calling you stupid or retarded is bullying. A teacher can say “You didn’...

I took Nathan to the pediatric dentist to sign the pre-op papers for his dental surgery today. It's over an hour there, then the shuttle to the clinic, then the requisite wait. All to sign a SINGLE paper that, I swear, my husband could have signed when he was there last month. Perhaps it has to be signed within so many days of the surgery, but really! In this day of electronics, couldn't this be handled in a video conference? Or on the day of surgery? There were 3 other families in the waiting area. One was a girl probably in her teens, in a wheelchair who had her mom, her dad (who texted the entire time) and her nurse with her. For a little girl with so many adults in attendance, she slept through the whole thing. Maybe she realized she had no chance against so many adults, or maybe she was tired from them wearing her out. Who knows? There were 2 other children there with their moms, but they don't figure much. We sat as far away from anybody as possible to mini...

Irritating thing neurotypical parents say #58 "My kid used to do that!" This is supposed to make me feel better? My kid wets himself, "My kid used to do that!" My kid disappears from our yard, "My kid used to do that!" My kid screams The Who songs at the top of his voice in a restaurant, "My kid used to do that!" My kid wanders into a neighbors house, gets naked and starts to climb in their tub...yeah, you know that answer. The thing is. The thing IS. Their kid was 3 when they did it and my kid is 11. And that phrase is supposed to make me feel better? My kid has been doing those things for 11 years. When did your kid stop that? Was he doing it at 7, 8 or 10? Yeah, I thought not. So I really think it is time to shut the hell up about your kid. Unless, your kid is autistic or DD. If that is true, then honey, come sit next to me and we'll compare stories. Because nothing is better than hearing from someone who's been there. And...

I have known for a while that some of Sam's teachers did not believe that he is fully capable. And it's been confirmed by more than one source that at least one thought he should be in a 'special school.' WELL. Ignoring the fact that the LAW is on our side regarding the least restrictive environment. It makes me wonder. How can you teach a kid who you don't believe in? I know it's not just my kid that is affected. There was a really interesting experiment done where teachers were told that a class had done poorly on testing when they really hadn't. The teacher taught down to (think talked down to) their class and their scores dropped A LOT by the next year. And for an underperforming class, the teacher was told they had scored well. The next year all the kids were scoring much higher. Your kids become the people you believe them to be. As a parent and as a teacher. If you label them, it becomes a self-fulfilling prophecy. The bad one, the smart one...

The other day a friends was telling me a story and finished with "How could it get any worse than that?" Right away I rattled off a half a dozen gory ways it could indeed be worse. Horrified, she stopped my listing. While I was indeed trying to get a rise out of her, I also truly believe that it could be worse. It can always be worse. There are myriad ways it could be worse. Today I was talking to a patient with fibromyalgia. In the middle of her recitation of her aches and pains she said "and I know you said it will just get worse." There I halted her. I told her that while she will have exacerbations, she will also have remissions. This is a stable disease. While it tends not to get better, it also does not tend to get worse over the long run. But her self-talk had led her to believe that she would just keep getting worse. I told her "On bad days tell yourself 'it has been this bad before. I have made it through days as bad as this. Tomorrow...

I was reading an article about how people with severe disabilities are paid. In a law that was meant to get more disabled people working, it is not a necessity to pay them minimum wage. You can pay them based on the amount of work that they do. In some cases it's cents a day. And those are the lucky ones. The unemployment rate for the developmentally disabled is about 70%. Let me say that again. 7 out of every 10 developmentally disabled adults is not employed. It got me to thinking about a lot of things. How little we value these people. How low a priority of helping them to live rewarding lives our government, and most of our populace, has. How much we are willing to send the jobs they can do to to India where people will do the same jobs for about the same amount of money and then ship it back here for us to buy. How, instead of rewarding employers for hiring people with disabilities, we encourage them to devalue them. I was on the board for a sheltered workshops. I...

In my life I have heard thousands of variations of "I've got it so bad." I've offered up, and invented, a few of mine own. It's healthy to grouse and complain a little. Kvetch, whatever you call it. Where it gets out of hand is when you start believing "no one has it worse" in your heart of hearts. I suppose, theoretically, there is someone, somewhere in the world, who is THE Worst Case Scenario. But it isn't me, and it isn't you. When you believe that, even a little, you start to defeat your own self. You start to live on the Pity Planet where nothing ever gets better, and no one REALLY understands you. Where there is no sense seeking help, because no one really cares anyway. Where you spend your whole day in bed, because why bother to get up and face the world where no one understands how much you go through every day. Some days I have more energy and more willpower, and some days less. Some days I'm a great parent, and some days...