spectrumom

There reaches a point at which the best you can do to be a not-bad parent is keep more than an arm's length from your child. I am reluctant to even say that. I have read blogs by Aspie writers in which they castigate parent bloggers for having thoughts of harming their child or themselves for behavior generated by autism. But I am that bad parent. I admit that if I were beside Nathan right now I would probably have smacked him at least once tonight. We are staying at a hotel, visiting family for the holiday. Which, I admit, when viewed in the 20/20 lens of the retroscope, was a sorry mistake. Last night he was up until past 3 am. Right now he is stimming, singing "Do Lord," and saying "Wake up!". Repeating numbers "20, 20...20, 20...20, 20" "56, 56...56, 56." And it is after midnight. My other two will almost certainly wake up about 6 or 7. I am frustrated. Sad. Angry. Tired. Sleepy. When I tell him I am going to spank him he says...

I don't watch tv.  I am totally deficient on current pop culture.  I'm chill with that.  I have lots of ways to waste my time and get fatter that don't involve current television shows. What I'm talking about is our new version of normal. When our two older boys were diagnosed, it had a lot of impact.  What am I saying?  It was devastating.  I know the Aspie community hates for parents to say that.  But it would be an emotional lie to say that I didn't mind my boys having autism.  I think the key for me has been growing to love them as autistic individuals.  To acknowledge that autism is part of who they are, not a disease to be overcome. That is not to say that I love all of their autism.  The fears, the rages, the shut down moments and hours.  And days.  The severe limitations on communication.  The susceptibility to bullying from kids and adults, including some teachers.  And the inability to tell us that....

Nathan has been doing so much better (not screaming, crying and biting himself 17 hours a day) for months, so we decided to come visit Paul's folks for Christmas. We kind of overlooked the fact that Nathan is still intermittently (frequently) having trouble sleeping.  Like up at 4am, or not going to sleep until 1:30. Last night at the hotel he outdid himself.  He was up past 3:30.  Laughing, talking, unable to quit rotating like a top in bed.  I took the first round in bed with him.  But I realized there was no point in being in the same room with Paul, because Paul was still awake and listening to us.  So, being the rational (and very selfish) person that I am, I went into the other room with Sam and closed the door at about 1:30. I can tell you that, at least in our family, parenting skills experience a marked degradation as night turns into morning.  Neither of us were thrilled with our own behaviors last night.   This morning, while...

All of the children who died at Newtown, CT last week were special.  They were dear to their families and friends.  And in death they have become dear to all of us, because we can imagine what it would be like to lose our own children or the children of family and friends. Two of the children who were killed last week have been confirmed to have been autistic. They were Dylan Hockley and Josephine Grace Gay, 'Joey.' Joey's parents have set up a fund with the Doug Flutie foundation. Please read her story  here  and consider donating to this wonderful fund to help children with autism. In honor and memory of these dear children who will never get the chance to prove how much they could do, and in memory of the teachers who died protecting them.  And the parents who will never get to hear their voices.

Years ago, my oldest was evaluated before starting kindergarten (which we didn't follow through with, but that's another story.)  A psychologist was in the meeting and talked about his evaluation.  In the intelligence testing Sam was supposed to either point to or say the right answer.  It started off ok.  But the psychologist, under the rules of the test, was not allowed to tell Sam he had done well.  So eventually Sam stopped responding.  Even though the psychologist could see him looking at the right answer, he couldn't count it. And so he gave him a diagnosis of mental retardation. And my response was "You knew the test was a bad one, that it wasn't accurately measuring, but you took a conclusion from it anyway.  I'm sorry, who is retarded here?" Nathan has been assumed to be mentally retarded because he has been untestable.  He would not cooperate with any testing.  Therefore he must be retarded, no? The lady who oversees the his...

The recent school shooting in Connecticut has raised a huge furor in the autism community.  The shooter was reported to have Asperger's Syndrome.  Somehow the media felt this explained his inexplicable actions.  A thing that sickens humanity is capable because he has a mild form of autism? No. We who live with autism every day know this cannot be true.  Actually, our kids seem to feel their and others' emotions at a higher level than others do.  When they don't appear to react, or they react inappropriately, to others' emotions, the reason is not that they do not feel.  Many times they are overwhelmed with the emotion and their ability to cope shuts down.  Other times they don't understand the emotion.  My sons cannot understand how you would laugh through tears.  Their understanding of emotions is simplified.  When they are angry, they are angry,  When they are sad, they are sad.  So many times I have seen my sons pick up ...

We went to ride the Santa Train today in Strasburg. I was tired from going to the Hobbit (I know, boo hoo for me, right?) last night.  The boys were rigid and picking on each other. Amazingly, Nathan was the nearest to his baseline.  Which is not saying much because he bit himself at least a dozen times. Sam was rigid and rude.  He actually lost electronics for the evening for being excessively rude and then losing control and crying because I wouldn't play the music he wanted, even though the music I was playing was something he routinely listens to. Isaac was also very rigid.  And picking on his brothers when any sensible (read non-Aspergian) would know that he was dancing on a tight rope above the flames of brotherly conflagration.  Who knew that sensible = able to read body language and thus interpret that your actions have an effect on that? It was an awesome day. I actually took some time to watch some other parents there and found some differe...

Last week I had a number of positive sounding blogs.  In fact, I was starting to annoy myself and sound repetitive. Then Nathan went on a corrective course to fix that. Saturday he stayed up until 1 am, Sunday until 3am.  Monday he went to bed on time and woke up before 4am. This course of awesomeness is correspondingly increasing my negative outlook. First, I'm dang tired.  Last night, I went to sleep early (for me) but when he wakes up, even though my husband is the first to get up with him (which I know generates a wave of jealousy and hostility from 90% of the moms out there) I can't go back to sleep.  I can hear him singing, yelling, thumping his chest.  If they come downstairs our room is right over the television and it's an old house.  We've pulled up the carpeting.  Sound travels easily.  And I feel bad for Paul, so I set my timer for about 1/2 the time I know we have until everyone has to get up.  It always looks like an ina...

I enjoy reading blogs from folks on the spectrum. They have a lot to teach me as a parent, and give me a lot of food for thought.  One of the things that has struck me, though, is their dislike of parents' grief. Some say that grieving your child with autism is a rejection of the child. I reflect on this quite a bit, because I have grieved my fair share. And, of course, being an aficionado of guilt, this gives me one more reason to have parental guilt. So here are my thoughts on grief, with a dollop of Buddhist philosophy thrown in. Grief according to Buddhism is a form of suffering. Suffering is caused by telling ourselves things should be other than what they are. When our children are diagnosed there is a wash of emotions, most of them negative. Grief for the child we had imagined (while most people do not have the child they had fantasized, they have 15 or 20 years to adapt, not a few hours in a doctor's office.). Fear for the future. Angry/Guilty questions of who ...

THE most awesome thing happened today.  Nathan threw up. Opposite day right?  Or I missed the Sarcasm Font (that's right after Helvitica and right before Times .  I'm afraid blogger is not replete with fonts.) No, really.  Although it wasn't so much the throwing up, it was how he threw up. First you have understand the history of Nathan vomiting as it applies to us. Nathan is a vomiter.  Not one of those voluntary vomiters (thank you FSM) who vomits 10 times a day to get out of unwelcome tasks (he just says "Noooooo-ooooo" in this sing song voice that Paul and I use on each other to be annoying.)  He has horrendous car sickness.  He has been known to vomit while driving on straight interstate.  It is not helped that when he starts to feel bad he leans his head on the door and stares out the side window. And whenever you suggest that vomiting into a container, rather than all over the upholstery would be great,  "Noooooo-ooooo" rin...

For a lot of people the Holidays suck.  I see folks in my office that are more depressed than usual.  Family can be a big disappointment and stressor.  People have an ideal in their head that can't be met, either because they can't control the people who would make it possible, or their ideal is too perfect.  Their ideal is too idealized.  Which, I guess if you can't control people, would make your ideal too perfect.  So that's redundant. When you have a child with a difference, the bar for ideal is lowered. It is not just that you can't put up that awesome train track that runs around the ceiling.  You can't put up a Christmas tree, because your child eats/breaks the ornaments.  And bites the lights off the light strand (true story.) Christmas gifts are a challenge.  Either your child has this very exact idea of presents ($250 for a Lego set, I think not!  You want the components to build a real submarine?)  Or your nonverbal...