spectrumom

Nathan recently went through a period of the hardest handclapping I have ever seen or heard.  My husband (who builds audio equipment such as speakers and has some experience in this area) estimated it at at least 120dB.  It was explosive.  He clapped so hard he got calluses.  That then cracked open.  The more frustrated or angry he would get the longer and louder he would get.  When we were at home I would ask him to go to another room because I find the noise to be quite painful.  Once in the car with just me he began doing it.  The sound was excruciating to me in that closed space.  I tried holding his hands down and he looked daggers at me and snarled "Get your hands off me."  I was actually thrilled, although I told him that I would help him control his body until he could do it for himself.  Luckily with another med adjustment (we're in the middle of an extended phase of this right now) that has mostly gone away. One of the recent big stories in the autistic comm

We had Parent Teacher Conferences for both the High School and the Elementary School last night. When we got the schedules it looked like this: High School    6:10-6:20 Mrs. K    6:20-6:30 Mrs. W    6:30-6:40 Mr. M I was worried about having enough time to talk and also transition between classes.  But THEN we got Isaac's schedule: Elementary (3 miles away)    6:40-6:50 Mrs. S Yeah.  So I fired an email off to change that.  Here's what we found out. Our little Aspie is a math whiz.  He's in 2nd grade working at a 4.5 grade level.  I know that Paul and I met while getting our undergrad math degrees (nerd?!  How dare you.)  But still, it's not like we overtly teach him shit.  He can do multiplication and division.  Where the hell did he learn that? He's also reading at grade level according to the computer.  But I think it's higher.  He has a very measured way of speaking, and his first grade teacher told us people read the way they talk. Did

I was given a month's use of Avaz for the iPad to trial and blog about. We have used Proloquo2Go for over a year now, so I'll compare it to that, since that is what I know. I thought it was pretty terrific overall.  Very easy to use.  Just the right number of bells and whistles but not so many that you get lost. Pros:    1. Cost.  At $99 it's almost half the cost of Proloquo2Go.  While it's more than others, I think it's much more useful and powerful than most of the entry level AAC apps.  If you are truly in the market for an AAC app for the iPad, I think this is an excellent one to get. If you are just getting your feet wet, perhaps a cheapo one is a good place to start.  When you move up, consider this one.    2. Ease of use.  It's easy.  It's REALLY easy to use.  I was able to talk my oldest boy through configuring it just hours after I first used the app.  It really is THAT easy.    3. It's powerful.  You can use words, pics or the carto

There is a boy at one of the places that we commonly take Isaac.  I don't like him. He's difficult.  He can be hateful and rude.  He says and does things to hurt Isaac and other boys deliberately.  He is the kind of kid about whom people say "He just needs a good whupping."  "Where was his mother when he did that?"  "If I had done that when I was a kid...." His mom tries constantly to correct him.  She looks tired and discouraged.  She does all the right things.  She seems embarrassed and overwhelmed. I'm pretty sure he has ODD.  Like my boy, he is wired differently. But unlike my boy, his mom can't say "He has autism."  He's not awkward.  He doesn't talk in that stilted way.  He's not in special ed.  But he can't stop what he does without a lot of intervention. But meanwhile he and his mom are constantly judged and found lacking.  Bad parenting.  Bad kid.  Bad genes.  Bad seed.  Different wirin

I've blogged before about how the perspective having kids that span the spectrum gives me.  Each of them has their own unique problem set, while sharing difficulties that are the base of the spectrum. The interesting thing is, our oldest is showing us what this is like on his own. When Sam started out, he was nonverbal.  He did not talk until after 6.  He did not potty train until after 7.  Then he started developing speech, but he never paid much attention to other kids.  He liked having people to tell his stories to, and discuss things (ie. he talked and you nodded and agreed, because interjecting a question or differing opinion was not on the game plan.)  However, he never really had or seemed to want friends.  It didn't seem to bother him that others never invited him to birthday parties or out on group trips. When he was 12 or 13 he went to a summer day camp at a local church.  It seems a number of kids who went there had their own issues.  When he was told that kids

As an activist for many causes - feminism, people with disabilities, GLBT equality, and adequate medical care for all - it never fails to raise my blood pressure when people say "See!  You're getting angry again.  How can we resolve this if you keep getting angry." But, you know what?  Anger is a cue that something is going wrong. And it may not be with wrong with you. When people are getting fucked over.  If YOU are getting fucked over.  If your child or loved one is getting fucked over.  You get angry.  And you should. And you should NOT calm down just because those who have the power are telling you to. You can calm down when wrongs are righted.  When people's rights are not being trampled.  When people are not being fucked over. You need to call a congressperson.  You need to schedule a sit down with a teacher.  You need to send money to a cause.  You need to put in sweat equity. You NEED to stop sitting on your duff letting things that make you angr

So the Lithium hasn't really worked out.  We started decreasing the dose yesterday even before I contacted his doctor.  She had us take the dose down even farther. Today was better.  He was much more in control through the day.  Less of that crazy cycling in and out of anxiety and agitation.  Tonight, not so much.  He's upstairs screaming and pounding the walls while his dad tries to convince him it's time for bed.  An hour ago. But I'm grateful for the day.  It's like it was given back to us.  Even with the trouble tonight, I still was able to take him to Costco and Goodwill and out to eat by myself and give Paul time off. So much of the time I feel sorry for me and sorry for him and sorry for us.  Autism makes our lives so different compared to other people.  There are places we can't go, things we can't do. Most of the time I don't talk to people about him except in vague terms ("Nathan's doing better (ie. he's not breaking the sk

It's like dating.  Every time we try a new med on the boys, I think 'Maybe THIS one will help us break through.  Maybe this is THE one.' Not a miracle.  A way to move forward faster.  More communication.  More steadiness of emotional state.  We've had two med changes recently, one for each of the older boys. As I've mentioned before, Sam tried a few meds in the past.  None were THE one.  It was just lots of work, time to mature.  He's made so much progress.  But still lots to go.  We do have him on Adderall, to try to help him to pay attention in class.  It works...some.  Really, no big problem behaviors to address so we just keep plugging along.  He's had some more distractability recently, so Dr. Bernie increased his dose when we saw him yesterday.  Sam's grown a lot, time for his dose to grow too. It's hard to tell if it's a summer of too much computer, puberty, meds, or all three.  We've made adjustments to the computer time as well.

I am a fixer.  I am overbearing.  I have to hold myself back.  I am a pusher at the same time.  I think I always know how things might be better and tell people.  Especially my kids. I get on my last fucking nerve. And I get on my kids' nerves too. And Sam told me off. I am SO HAPPY. Sam was working on a paper the other day and asked a question.  I pulled out a sheet of paper to help him organize his thoughts. "What is that for?" I thought it might help. "Put it back in your book, it's not for me." But if you organize your thoughts it will be easier. "Mom, leave me alone I'm doing my homework." I'm just trying to help. "Why don't you just stop and be quiet!"  (He really got quite hateful and hurtful at this point.) You really hurt my feelings and I don't like that. Time went by. "Mom, I just want to do this independently." Sam, I am so proud of you.  Thank you for telling me that.

Way back in the day, starting when Sam (now 15) was diagnosed, and continuing for about 7 years, we looked for a way to fix our boys. I know.  I've blogged this to death. But we tried DAN! - vitamins, supplements.  Avoided gluten and casein and foods with phenols.  I rubbed them with pink cream (B12).  I went to gazillions of meetings and spent thousands of dollars. We did ABA, VB, RDI.  Bought Floortime videos.  Bought books.  Lordy, I still buy books.  Too many for any one person to read.  Unless I dropped out of the rest of my life. "Hun, keep the kids alive for the next couple months while I read all these books, mkay?" Then I turned to conventional medicine.  We thought maybe Sam did his pacing and stimming because he was nervous, so we started Prozac.  Lordy, turns out that was a mistake.  Then stimulants.  Okay, that helped some.  Pacing and stimming go on, because they serve a purpose - they center him and calm him. Nathan we started on stimulants too.

As a parent of a child with autism I find myself wondering "When does this end?" He's nearly 13. When does he start sleeping?  When does he stop wetting the bed?  When does he start telling us when he needs to pee?  When does he stop flushing washcloths down the toilet? When can we stop locking knives and pills and sweets and tools and powdered everything in the basement?  When can we have more couple time?  When do I get to take time away without feeling that my husband is being put upon?  When does he get time away without me feeling overwhelmed? Autism often feels like a perpetual toddlerhood with increasingly  large kids. I am grateful our sons have learned to use the toilet, because so many I know haven't. But I want so much more.  I admit much of it is for selfish reasons.  Although much of it is for our boys too. I want Sam to achieve his goal of driving. Of getting his own apartment. I want Nathan to be able to declare his goals so that we can work to achieve

Tonight our 15yo came down to get his dad to help him get the rubber bands on his braces.  "Oh.  And I accidentally spilled a glass of milk in my room." His little brother, whose life apparently is mostly supported by milk, had taken a cup upstairs.  But hadn't finished it before bed.  Sam had knocked it over and not cleaned it up. BUT.  He had told us.  Unasked.  With nothing to gain from it.  Unlikely to ever be discovered. Such a simple thing, no?  Mentioning a mess.  A mess that would soak through a carpet and possibly smell later.  That could damage furniture if not found.  He hadn't cleaned it up.  But he had mentioned it.  Unasked. These things that other people take for granted.  That are missed in the verbosity of daily life.  So expected that to not be told could be irritating.  "Why did you not tell me?" But for us is never taken for granted.  Is remarkable.  Is blog-able. I feel that I can't convey the weight of such a simple

Disclaimer: I never anticipate us being able to go to Disney World.  Ever. It is too big, too busy, too expensive.  I would feel like we had to do so much to get our money's worth.  And if Nathan couldn't do it and we had to leave, I would be devastated. I love Disney.  I've went there a lot as a kid.  My sister worked there (funny store about how she lost her job skinny dipping in the lake).  I did the high school band thing there. I know that Nathan would adore the characters.  He loves anyone dressed up in a character costume, and he would be fascinated. But. If everything went south, and the shit hit the fan, we would have to leave. And I have 3 boys who are very rigid, and not very able to adjust for the needs of their brothers.  Who would be understandably upset about plan changes and loss of anticipated pleasures.  In other words, I have 3 potential meltdowns.  All with the ability to raise the level of meltdown in their siblings. This summer we went to

A blog posted on  Psychology Today posed a question that I've been considering myself: Why does society only consider the family's trauma of living with a person on spectrum, not the trauma the person who is on spectrum lives with daily? Which is a perfectly valid question.  Watching my kids, I know that I am aware of only a small percentage of what they face every day.  Due to their language problems and anxiety they relay only a small part of what they face.  Watching Nathan, who has only words to ask for a few things-food, some actions-I know he is SO frustrated with his inability to communicate, and inability to discuss strategies for dealing with his internal issues.  He is constantly bombarded with impulses and sensations. Last night, Nathan had a horrible gut bug with vomiting for hours.  Now he has diarrhea.  He couldn't tell us when he was about to vomit, not even call out 'mom' to get my attention.  After he would vomit into his bucket he would say

At some point, when our children are infants, we can imagine what it is like to lose control and harm them.  The vast majority of us never do.  But we can see losing our temper, being so sleep deprived and stressed that we hurt them. When we see stories of people who do such horrid things, we are shocked and appalled.  But a little voice in the back of our heads says "If the circumstances were right, who is to say I wouldn't do such a horrid thing?" It is like standing on the edge of a cliff and realizing you might jump.  But you never do. Some of those children grow into a diagnosis of autism or other difference.  Sometimes this includes severe sleep issues.  Sometimes self-injurious behaviors.  Sometimes aggression. Sometimes we can imagine losing control and hurting them.  The vast majority of us never do. When we see stories of people who do such horrid things, we are shocked and appalled.  But that little voice in the back of our minds says "What if?

Every time an autistic child is deliberately killed by a parent (known as filicide, committed usually a mother) there are usually 2 polarized reactions that I see in the autistic community.  The first is a chorus of parents saying "Don't judge.  Parenting is hard.  The situation was hard."  The opposing is to say "Autism is NEVER a reason to murder a child." And it isn't a reason.  But there are many parents who murder their children, often in a murder/suicide attempt, whose children do NOT have autism.  And I thought 'What do these people share in common?'  Because there must be commonality there.   And perhaps we are having the wrong discussion.  Instead of asking about the children's characteristics, perhaps we should be addressing the perpetrators' characteristics.  And then formulating a plan to address them.  We discuss primarily mothers because they are the most likely to be the primary caregivers and males murder/suicide has charact

We are starting our 3rd year of homeschooling our 12 year old son.  My husband is the primary instructor.  Nathan is minimally verbal, with bipolar and associated irritability, and has self-injurious behaviors.  Many parents I hear say "I love those hours someone else is in charge."  But we are glad we homeschool. Here is why. 1.  He wasn't learning.  The people in charge of him, in general, underestimated him.  They changed over frequently and each new one would assume that his IQ measure of 46 was accurate and start at the beginning.  Again.  For some he was even doing ABCs.  Many of them he apparently held in contempt because he would act like he couldn't while his TSS snorted with laughter when the teacher would say "the poor dear doesn't understand."  Even if they did believe in his intelligence, the load on their time kept them from pursuing what had to be done.  He's reading now on a third/fourth grade level and doing triple digit addition

This afternoon I took the boys to Walmart (a mistake, but a quick trip, I promise!), to a restaurant and our favorite ice cream parlor (Carmen & David's in Lancaster - THE most AWESOME ice cream EVER, I swear!) Nathan was starting to get grouchy, I'm pretty sure from the discomfort from a fairly large burn (front of thigh from nearly top to bottom, don't ask :_(  We're all unhappy about it.)  We did what we had to do in about 15 min and left.  But he got grouchier from there. I just got a new augmented alternative communication (AAC) app, Avaz which I *just* loaded on the iPad today and grabbed to take along.  I did a few adjustments before I left, but did much of it on the way.  I even had Sam add over a dozen icons while we were in the car.  So.  Easy to use?  Yes, very.  I'll blog on the app later in the month (I only get it for a month, so we'll see.) I knew Nathan didn't feel good, so I showed him the app.  I put him in the feeling category I

As most of you know, we're been doing this autism thing for almost 13 (anniversary of the first diagnosis in 2 months!)  Over 15 if you count the blissful denial period. In that time we've seen a lot of shit both inside and outside the community.  Too much to list here.  Just say, it can be disheartening.  We've seen tons of good stuff, too.   Much more than the bad. But I'd like to mention something I've seen going on within the community.  And that is giving advice as if you were the expert/parent.  Saying "This is the way it should be done, and I KNOW BEST." In one case recently, I saw a parent advise another parent that she should kick her older teenager out if he didn't buckle down to the rules. WOW!  You have no idea what is going on with that child or parent.  You have no idea what the family dynamics are.  You have no right to make another parent feel inferior because of their parenting. When a person puts a question out there, they a

I was pondering tonight the tens of thousands of dollars we have spent in the last 13 years to try to help our children deal with autism. Direct and indirect expenses.  Conferences on therapies, since we have mostly had to run our own ABA.  Conferences on biomedical approaches (mostly fallen by the wayside.)  All of the travel expenses associated with them. The trips to therapies-occupational, speech and physical.  The therapy itself often paid for by insurance.  Therapy camp, which has cost us probably 15-20 grand over the years not counting the thousands of dollars for travel expenses which are most likely double that if not triple. Travel to consultants.  I always say we're an hour from everywhere.  But some of our consultants have been 3 or more hours away. Special diets, always out of pocket.  Therapy toys for the home, always out of pocket.  7 years of diapers x 2 boys (just glad it wasn't longer.)  Because we felt we were better able to afford it, we didn't a

I've made no bones about this parenting 3 kids with autism being a easy row to how.  To mix my metaphors.  It's hard on both of us. I was telling my husband the other day that I had a crazy person moment.  I was just teetering on the edge of frustration, depression, and auttie kid stim overload.  And I had the kids in the car taking them away from him so he could do his thing-ride his bicycle for miles and miles up and down mountains. I got this idea in my head that I just wanted to keep going.  I thought 'I'll take them to Baltimore.  And we'll visit the aquarium.  And then we'll leave and we'll just drive.  Drive and drive and maybe never stop.'  It was like those thoughts you get when you're standing on top of a cliff and a little part of your brain says 'Jump!  Why not?'  Except a lot stronger. I mean, crazy, right?  3 autistic kids and me, who is dangling by a fucking thread, going on a road trip like fucking Thelma and Louise. B

The grade school I went to was a VERY small parochial school.  Very small.  As in, in the time I attended for 4 years, the K-8 school never had more than 12 students all in one room.  Yes.  That small. When I was in 7th grade a new student came who was one year behind me.  As is the wont of ignorant adults, no one told us anything about him.  We came to realize he had delays.  Looking back on his physical appearance and delays with autistic characteristics, I have come to realize that he probably had Fragile X. He was desperate to fit in.  Desperate for a girlfriend, because the other big boy in school had one (not me, I didn't fit in either, although better than him.  And she had big boobs.  Something I still don't have.)  And he was constantly in trouble.  Whatever trouble he didn't get in by himself, some of the others were willing to goad him into.  And our school allowed paddling, although that was rare.  Unfortunately, it wasn't rare for Charles. Remembering

I admit it - I eat my stress.  I always have.  And I hate those people who say "I always lose weight when I'm stressed.  I just don't know what to do!"  Because, let's face it, society loves thin people.  And the thinner you get, the more people love you.  If you get super thin, people say how worried they are about you.  But the fatter you get the more people blame you for your weight.  The more I blame myself for my weight.  If only I had more self-control and weren't such a slob. I actually had a male client at my workplace say "You've gained weight, haven't you?  A lot of people feel better if they lose weight."  Really?  Yes, I had weighed myself that morning and had gained 10 pounds.  So, thanks for rubbing salt in that wound. And while things with Nathan are just now starting to improve, I continue to feel anxious and depressed rotating with feeling okay.  So, I started back on Weight Watchers online.  I started exercising.  I

This evening my husband ran out to get some corn at a local farm.  I was finishing my supper when I realized the house was unnaturally quiet.  I had a moment of panic, then realized Paul had come back and gotten our 12 year old to go with him on the tandem bicycle. I panicked over Nathan's absence because he is a wanderer.  An elopement risk. This year over a dozen children with autism have died after wandering away from safety and into danger in the US alone.  While most were smaller children, several were adolescent. With autism, the risk of danger does not always come with age.  50% of children with autism have some degree of elopement.  Our older son has wandered away, but this was mostly through inattention to what he should have been doing.  Nathan is often driven to leave.  Drawn by the remembrance of gum machines.  Or just wandering, trying doors (which in our small town are often left open.)  While he loves water and pools, we have rarely given him access to them, an

Functional Behavioral Analysis is one of those things on the learning curve that is autism.  That curve is SO steep that you get mental whiplash over and over and over.  FBA comes in pretty early though, on the steepest and most vertiginous curves that you will probably face in the road course that is autism. FBA consists of breaking a behavior down (and it's always an unwanted behavior, which is stupid, because wouldn't you want to analyze the whys and wherefores of desired behaviors in order to increase them?) into its ABCs - antecedent, behavior and consequence.  First, you define the behavior in very narrow terms (not aggression, but biting other students), then the antecedent and consequence.  In this case the antecedent might be "peer in student's personal space" and consequence might be "peer goes away."  Then you take lots of data and look at it for a pattern. Today, however, I used it as a learning tool with my teenager, who had a hard day.

In some of the boards I (used to) follow ('used to' because it's all Facebook now), it seemed strange to me that people would list their kids after their name.  And list EVERY SINGLE diagnosis in the family.  It felt like it was a points based system and the more initials your kid had after their name, the further ahead you got in the game. So you would see: Emily (9) OCD, MD, SPD (major depression), gifted, severe nut allergy Johnny (7) ASD, ODD, SPD, bipolar verbal Mikey (5) NVLD, OCD, SPD, sensitive to gluten Ellie (3) PDD-NOS,SPD, seizures, asthma, multiple food allergies Mary (35) Depression, Fibromyalgia, high blood pressure Duane (36) Aspie (undiagnosed), SPD, high cholesterol And I was like, 'Dude, it's just about potty training.  There aren't points counted on just another potty training comment.' Besides which, I win!  I mean, right?  I got three on spectrum.  I won the game. But really, that other stuff?  It's the go-along stuff

When I was a resident I would see parents of severely disabled kids come through our clinics. Wheelchairs or walkers. Or severely MR (that's what we called it then, instead of ID.). I'm sure some of those kids had autism, even though that word wasn't really on my radar then.  But I never really wondered about their personal lives. How were their marriages?  How often did/could they have sex?  Did they ever get a weekend alone?  Did they have friends?  Did they have friends that 'got it?'. How did they handle thoughts and worries about the future?  Did they ever wonder if they would have a life that didn't involve changing diapers and feeding tubes and fighting the government for new wheelchairs and appropriate placements?  How much guilt did they have about their inability to fix things? Or for their part in causing their child's disability?  How many 'What ifs' did they have?  How did they handle ignorant schmucks like me who didn't have a clue

Today we saw a new doctor in our never-ending quest to make Nathan's life (and our lives also) better. It was quite a good visit. We saw an education specialist who gave us some very good, very practical things to try. Then we saw the doctor who specializes in both autism and brain injury in children. She gave us excellent advice and some very helpful connections for seeking respite and a therapeutic inpatient facility in case behavior disintegrates back into the deeper realms of hell. She also changed his meds a little and told us the direction she would be heading if this plan doesn't work the way we hope. We are definitely on board with the changes she is suggesting.  I should be thrilled. Instead I feel like crying. In fact I very nearly am.  Why? (she asks rhetorically, since the answer is the purpose of this blog.) For one it was a pretty stressful visit. Nathan did not understand that he would be seeing TWO providers. So when the man stood up to discuss our case with the

Sam is 15.  At his well child check yesterday he got the HPV vaccine.  As he says "to protect me from throat cancer." Now, he doesn't know diddly about Michael Douglas (notice how I included a form of diddle in there, because I'm so mature) and he knows nothing about cunnilingus or fellatio.  And I think he might giggle himself to death if we mentioned labia and vagina.  And he gave me a LOOK when we were talking about nocturnal emissions and denied having any such thing emit from HIS penis.  (Of course, Mr. Big Ears in the back seat didn't miss a thing.  Weeks later while walking in Target the 7 year old expert pipes up "You know, mom, more than pee can come out of your penis!"  You don't say, buddy.) That is not to say he's not interested in sex.  He is.  And has been for years.  First, as an academic pursuit, when he went around doing an in-depth study of every one he knew(and several random acquaintances)  to see if they had sex  And, if

 I see you over there. Across the aisle. In the next checkout.  Staring. At my kid.  At me.  Because I am my kid. Flesh of my flesh, bone of my bone.  I bore him for nine months. And birthed him after 23 hours of labor.  And now I am birthing him again. 12 years of birthing.   Teaching him to talk. To hear. To write. To read.  And he is still being born.  The essence of him was always there. Just like you know your baby in the womb.  Stubborn, persistent, cuddly, inquisitive.  But stuck behind a wall of not-words.   Behind a need of motion.  Motion that makes his body real to him. Motion and sounds that are so weird to other people. That are his way of being alive. Of being born.  That's what you are staring at. You are watching his birth.  It can be painful. But it's always miraculous.  I think he is crowning now. 

When you are a parent of autism, your children are young much longer than their peers.  You lose that connection of "Johnny's mom let's him do it!"  They are not able to ride their bike out of sight, walk to the convenience store for soda, walk down to fish in the creek with their peers.  They don't go on sleepovers, because they aren't ready.  And, frankly, nobody ever asks.  And by the time they might be ready to do that, their peers have moved on.  They are now going on group dates, and riding their motor bikes and ATVs.  They're going to concerts of groups neither you nor your child have ever heard of.  They have learned to drive and some of them even have their own cars.  And your kid still can't ride a bike. And so you limit them for far longer than other kids.  Often far longer than they need. At 12, for Nathan, it is still not a question.  He has no concept of safety.  He has to be locked in the house for safety.  There are locks on the w

   Tonight Sam and I were discussing best and worst parts of his day. Mom: What is the hardest part of your day? ('Hardest' is a more acceptable word than worst.) Sam: Oh, at school or home? M: How about both.  What was hardest at school and what was hardest at home? S: Well, everything was good at school.  But I hate it because Nathan is always out of control! M: Oh.  How was Nathan out of control? S: He was screaming and screaming after dad put him to bed.  It hurts my ears! M: Ah.  Well, he does scream loud.  But I don't think he was out of control.  I think it was a way of regulating himself, like you do with walking up and down the hall. S: Well, it hurts my ears! M: It sure it loud.  I wonder how you could cope better.  How about your ear protectors? S: I could go to another part of the house. M: That's a good idea.  Or you could use earphones and listen to music. S: I could do that. M: So when Nathan screams in his room, he is actually s