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),...