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.  Or even recognize that when people are doing wrong

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 staring blankly off into space and wait

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 program for u

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 and amplify my emotions.  When my first

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 differences between their s

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 inadequate nap time. Second,

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" rings out.  In

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 child is a challenge to buy f

One of the biggest things I struggle with in my life is balance. Balancing my home life, my job, and my mental and physical health. Having three kids ranging the autism spectrum is a lot.  I could go into all kinds of explanations, but I'll simply invite you to read my previous blogs. My job is a lot.  I run my own business.  It involves going to the office Monday through Friday.  Being on call every other weekend and every week night.  Going to other towns to fulfill my obligations, mostly in the evenings after work.  Going to educational meetings.  My meetings often involve going fun places.  Baltimore, Hershey.  But they mostly involve sitting in a conference room all day.  I get to eat out, but sightseeing is pretty limited.  But what they don't involve is being home.  My husband gets stuck with our kids for that entire time.  If I stay an extra day to have fun, it's that much more.  So I come home tired from the meeting and coping with the anxiety that comes from

This has been a wild week, and it isn't even Friday.  Two weeks ago, we decided to stop receiving TSS services for Nathan.  I hadn't had any particular issues with the TSS, I just felt Nathan didn't really need it, and it was becoming intrusive to have a relative stranger in our house 5-6 hours every weekday.  Tomorrow will be our last day of TSS services. A week ago, we tried to wean Nathan down from one of his medications.  The prescribing doctor approved the reduction, and gave us instructions in case it impacted his sleep.  It did impact his sleep.  It also impacted his mood.  On Tuesday, without any warning his mood changed from his usual impulsive, headstrong, but generally cheerful to angry and panicky.  He would lash out without warning.  He bit his hands dozens of times.  I was afraid to let him more than arms length away for fear he would break something.  None of the strategies I had used over the Summer seemed to work, and I began to flash back to last Winter.

I'm pretty sure I'm hormonal today. I spent the day with Nathan.  Dad was off with a Boy Scout hike with Sam, and Gram kept Isaac.  So we took a trip about an hour North for pizza, bagels, grocery, Target.  Yeah, we're that far in the boonies that to get to all that stuff we have to drive over an hour. I played music on my iPhone for him.  First he asked for Coldplay.  We have Parachutes, which does not include my favorite Coldplay song, Fix  you.  So I asked him if I could play my favorites list.  Which is how I started crying. I put my favorites list together last winter.  I put in songs that gave me hope and fire for the fight we were in. And it was a war.  A war against the rage and despair that was consuming Nathan and contaminating all of the family.  It not only drug us into the depths with him, but stole our sleep and wrecked a lot of our worldly goods.  I wrote lots of stuff about it, so you can click back through my blogs from that time.  I don't reall

Getting the dog was a leap of faith for us.  Sam had always hated dogs.   He feared them from childhood.  He had loved them until he was about 2, and then a racing dog leaped over his head at a park, and that was it. Dogs move too fast, bark too loud, are unpredictable and dangerous.  Nathan followed in his frightened footsteps.  They both cringed whenever a dog was near.  But I have always believed that a therapy dog might be the right step for Nathan.  He could use cues that don't come from us and don't involve words for calming.  A dog that could keep him from bolting.  A dog that is not a hand on his, but still keeps him safe in a parking lot, a store, on a walk.  He resists our hands, does not like holding them especially when he's the most dangerous, most likely to bolt.  Not that I think that running is what he has in mind.  I think his mind is chaotic and a hand is one more overwhelming input.   But right then is when he most needs imposed safety.  And I have

I'm going to let you in on a secret. I'm not a funny writer. Astonishing, I know, for those of you who have been sniggering along to my posts. You were wrong all along. I want to be humorous. Truly. I tried. I read all of these blogs by other parents that are very funny about their lives with a side of autism. They have thousands of followers. I looked at my little score chart. The most people who ever even viewed one of my blogs was 51. That was the one about Blues Clues. I'm pretty sure those people got there looking for something actually about BC and thought "WTF?" So I think to my self "Self, this next post WILL be humorous. Or else." In a very threatening manner. But I just don't work well under pressure. So I write another blog about how I feel about autism. And our lives with autism. Which, while often real and raw, doesn't seem very funny. I think it's because I write for myself. More of a journaling thing rather th

For several years after our children were diagnosed, our thoughts were full of 'might have beens.'. 'We might have been celebrating a regular Christmas, not roping off the tree to prevent a pica-afflicted 3 year old from eating it.' 'My son might have actually been invited to birthday parties.' 'My son might have snuggled with me while I read his story. And he would have said "I love you too, mom."' If only they hadn't had autism. But they did have autism. And I read 'Welcome to Holland.'. And hated it with a fucking passion. Because autism is not like going to a biking cheese-loving country instead of pasta heaven. Autism is oftentimes more like going to a war-torn middle Eastern country with IEDs and snipers. Or being kidnapped from your yacht in Somalia. It often sucks. And I waited for that peace that comes from living in disability-land me and my kids now inhabit for years. And learning to be proud of every delayed

As a homeschooler, one of Nathan's lifeskills/OT/chores is the laundry. Putting it in the washer, hanging it out and sorting it. His TSS helps with this chore. Since I am out of the house and my husband is the stay-at-home parent/teacher I don't think about it all that much. But today I was talking to Nathan's TSS about shopping and I mentioned my Betsy Johnson bra. "Oh, you mean that black one with the polka dots?" Yeah. That's the one I meant. And that statement has bothered me all day. It's not that I'm ashamed of the bra. Most of my underwear is in good shape. Although I'm pretty sure I'll be throwing out any shabby looking ones pdq. It's just that it is one more part of my life that is not mine. I don't go around showing off my undies. Even though I hang them out, I tend to hang a bra between two jeans. You know, so I can pretend it doesn't stand out too much. I'm a haphazard housekeeper who, every few month

I was reading this blog by a special ed teacher about the ongoing controversy of cure versus acceptance.  I've blogged before about this topic.  Here was my reply to this post. I come at this from both sides. I have 3 kids on spectrum. My oldest and youngest are moderately and mildly affected, respectively. I love how they are (most of the time.) I feel no desire to change them into something else, only to help them along the path they are on. They are growing and becoming fascinating people. They have things they need to learn to cope with, more than some others. My middle son is a different story. At 11 he is severely affected by autism. Home schooled because he couldn’t learn in our local school. Bipolar, with rages that break things, hurt himself and others. I want a change. I work every day for a change. We medicate him to help control the intense anger and sadness that run and ruin his life. I want for him what my others have. I want a chance.

Tonight I was annoying Sam. Which is not hard to do. This time it was by singing the Blues Clues theme. Paul and I have been sniggering over the recent satirical movie trailers for Blues Clues and Dora , which is why the theme was in my head. And Sam was shouting "Quit quoting mom!". We tell him to quit quoting about a dozen times a day. So the irony is not lost on me. But I told him why Blues Clues is so important to me. How the first thing he ever drew were the clues from BC. How it gave us insight into the mind of our silent little boy. How he would choose the PECS for his favorite BC episode from the velcro strip on the TV and this was his first language. His first way of communication. And this is why Blues Clues is so important. "And now I play MindCraft." "Ye-ess..." And in a gentle, encouraging tone, as if talking to someone with especially slow processing skills, my lovely son said "Maybe someday I can teach YOU to play MindCraft, m

I decided as a small child that when I grew up I wanted to be a Welfare Queen.  Influenced probably by my mother, who had us on Welfare after she and dad divorced, I quickly knew that was what I wanted out of life.  However, my mom didn't have the staying power, and caved in to get her RN and then become a CRNA. In spite of her failure, that medical exposure made me set my sights even higher.  I wanted to be a DOCTOR while still using the welfare system.  It took some real doing. First, I became as nerdy as I could possibly be.  The better to attract other nerds.  Then, instead of going into English, I chose math.  Unfortunately, I didn't have the aptitude to do computers, physics or engineering, but it put me in close contact with these extremely nerdy folks.  It was obvious that many of them had Autism spectrum disorders, even though I was not aware of the term at the time. Finally, I met the nerd for me.  He was cute and smart and moderately nerdy.  I was a little conc

Cancer is when a body tissue grows and has nothing to stop it. Cells die every day and are replaced.  Skin falls off or is scraped and over a couple days it regrows.  Cells in the intestine fall off (slough off) as poop passes by and are replaced.  Blood cells get old and die after about 21 days and the bone marrow in our bones makes new ones all the time to replace them.  Usually body tissues only grow enough to replace what is lost through normal events.  Cancer happens when cells keep growing and growing even when there are already too many. How does that happen? Genes are the most basic building blocks of the body.  They code for the proteins that make up the cells that make up the various tissues (liver, intestine, heart, lung, et cetera) of our body.  Genes also have start and stop areas that cause protein production to start and stop.  These stop and start areas are called codons . When genes get damaged one of four things may happen.      1.  Nothing.  If the gene i

Today Sam came home from high school very upset. This has been his first week at high school, and it has been stressful for him.  He has done terrific!  He has kept up with the constant room and teacher change.  The practices that he did with this TSS have paid off, and he has gone from room to room to cafe to gym to chorus to class to class.  A total of 10 changes every day, not counting the bus.  But it did take a toll on him. We had made up two 3-ring binders, one for morning, one for afternoon.  Each had a folder for each of his classes, labeled.  Because I am anal and this is the best way I could think of.  But teachers provided a binder for math and one other class.  So one folder was redundant.  But he needed a folder for homework to come home with him in his backpack.  His TSS had mentioned it to me, but I had not gotten Sam to do it because I have not been home all week before bed.  Because his support staff changes five hours into the day (thank you PA Medicaid for thinki

A post I wrote in May, but never published.  It's unfinished, but I left it that way, since how I feel now is different and cannot be truthful to my thoughts in May.   Isaac was 6.5 years at this evaluation. Isaac was diagnosed with 'pretty classical' Asperger's yesterday. And I felt pretty good about the diagnosis. Unlike the first kid, whose diagnosis was like a kick to the head. Or the second when we were just like 'get it over so he can get the frigging services we need.' He demonstrated just why he was on spectrum during the interview. The evaluation was by a very kind speech pathologist, Beth Nottingham. I felt the Robin Hood connection was a good one. She first interviewed me about my concerns. And frankly, I was glad that it had taken us 6 months to get to this part of the evaluation (although I was very frustrated during the wait) because it allowed me to get my thoughts together about where we saw problems. And then, the ADOS. A very inte

I know so many parents of kids with disabilities worry about what will happen to our kids when they grow up. If we are not able to take care of them, what will become of them? In one way it is a good worry to have. I know this is an incredible thought! But I was reading blogs today from parents of kids with Niemann-Pick who have watched their children lose all skills and either have watched or are waiting for their kids to die. http://niemannpick.blogspot.com/2011/12/update.html http://gavinssafari.blogspot.com/ So I am glad that my kids are gaining skills, no matter how slowly, and have the potential for a normal life span. On the other hand, I wonder how Nathan will be? If we will be able to help him control the thoughts and sensations that overwhelm him and cause him to throw and break things and throw himself on the ground causing horrible bruises. If he will be manageable as he grows bigger and stronger. If we will be able to help him to adequately communicate his ne

Sometimes adults are wrong. Or, I think they are wrong. This can be upsetting. If this happens in class, I often have a hard time moving on in the class.  My body and mind get stuck on the mistake. But getting upset in class is rude and it keeps me from learning. It is important that I follow a few rules when people make mistakes. First, I must decide if it is important to the topic being discussed RIGHT NOW.  If it is not important to what we are discussing RIGHT NOW, I will wait until after class to tell the teacher.  For example, if the teacher says "Sam has sisters."  But now we are talking about George Washington, I will wait until after class.  But if the teacher says "George Washington was born in 1986" I know this is important to what we are discussing. Second, if it is part of what we are discussing, I will raise my hand.  When I am called on, I can say ONE TIME "I think you might be mistaken.  I think that (insert correct information her

Sometimes when I have gym I need to change my clothes. When I change clothes, I stay by my locker while I change.  If I need to pee, I pee after I change. Before gym I stand beside my locker or sit on the nearest open bench and take off my shoes, pants and shirt.  Then I put on my gym shorts and shirt.  Then I put my gym shoes on.  I put my regular clothes in my locker.  If I need to pee, I can go now.  Then I go out into the gym.  I never walk around in my underwear.  I never show off my private parts.  I change quickly so I'm not late to gym. After gym, I go to my gym locker.  I take off my gym shoes, shirt and shorts and put them in my locker.  I put on my regular pants, shirt and shoes.  If I need to pee, I can go now. I change quickly so I'm not late to class.  I go out to my next class. I never show off my private parts.  If anyone tells me to, I tell them "That's rude."  And then I tell Kim or a teacher what that person said.

Sam is grouchy tonight.  Probably just being a teenager.  But it brings up a problem he has had repeatedly - getting upset with a teacher or other authority figure because they made a mistake, or he assumes they made a mistake, and losing control when they refuse to correct themselves.  As he inevitably insists they do. Hours can be lost to this. There are a host of reasons why he has trouble with this.  - He needs adults to be right.  When they are wrong, his stability is in jeopardy.  How can he be safe, if adults don't know what they are doing?  - Things have to be right, just they do.  Information has to be correct.  It is a rule.  - He doesn't recognize his body signals that he is losing control, so the loss of control speeds down the rails until the inevitable crash occurs.  And he can't get back into control for a long time, once a total loss has occurred. Negative emotion packs a powerful wallop and causes that train to go so fast. - People (adults mostl

I have body parts that everyone sees.  Everyone sees my face and hands all the time.  I use my face and hands to communicate.  I communicate when I talk.  I communicate when I smile or frown or use other facial expressions.  I use my hands and arms for many things.  I write, operate my games, draw, put on my clothes and do many other things every day with my hands.  When I wear shorts, people can see my legs also. Some body parts are only for certain places.  I only take off my shirt at the pool.  Otherwise, people don’t see my chest.  Girls never show their chests.   I have body parts that are only for me or my doctor to see.  My penis and butt are private body parts.  I never show these in public.  I use my penis and butt to go to the bathroom.  As my body matures, I enjoy touching my penis as well.  But I can ONLY do these things in the bathroom and my bedroom when no one else is there. Sometimes I think it would be funny to show other people my private body parts.  But this

I keep seeing these Facebook 'shares': I'm afraid of a world run by kids who were never spanked and who got trophies for just participating. Well. I've discussed the spanking before.  It turns out it doesn't work for my kids.  And it was just a product of my own uncontrolled fear and anger. So, if you want MY opinion on that: I'm afraid of a world run by kids whose parents disciplined them with uncontrolled fear and anger. Now on to the trophies. My kids don't get trophies.  They don't get awards.  I sat through 2 hours of Sam's 6th grade recognition (like a graduation, you got the hot gym and the crying babies and the incessant speeches, but no gowns.)  I noticed the same 5 kids getting all of the awards.  Over and over. They are good kids.  I know some of them and they are great.  I really like them. But they get recognized when they're great (the star of the play, the soloist in band, the athlete that wins the game) and then th

The Buddha taught that life is a series of losses.  It is only when we accept that things are never permanent and stop our grasping reach at what is actually shifting fog in front of us that we can actually be happy.  Our ideas of what should be and what could be ensure that we are constantly disappointed.  And our self-talk about how awful it is that things are not the way we think they should be is what causes us to suffer. This seems pretty straight-forward.  Until I try to apply it to my own life. Life in general provides frequent reminders of how grasping we are.  How we long for permanence. How more so the life with autism. Autism is a constant reminder that I wish things were different.  My older son's experiences with bullying.  His troubles with adapting to his brothers' needs.  The rigidity that complicates every day.  My middle son's anger and sadness.  His inability to communicate even after 11 years.  His destruction of our house and aggression towards