spectrumom

I've been reading some BS on the webs about how some parents of kids with autism have some butt-hurt because they don't have the kids they wanted. And from the way it's worded, it sounds like it's most of us. So I wanted to put it out there what I'm butt-hurt about. I'm hurt that my kid hurts himself. I'm hurt that he hurts others. I'm hurt that other people, both peers and adults (HELLOOOOO asshole teachers) bully my child and think he is less than respect-able. I'm hurt that people assume my kids are not able because they have a difference. I'm hurt that their lives will be limited by that, in some way. And already have been (like not invited to their class parties, hmmm?) I'm hurt that my kids are not always able to speak for themselves. I'm hurt that my kids cannot choose for themselves. And, I'll admit to some butt-hurt that my life is often difficult because I put my kids' needs ahead of my own (I really,...

You young girls, with your shiny, new degrees. You KNOW everything. You've done the research. You've written theses. You've worked with experts who also KNOW everything.  You know exactly what I'm doing wrong. You've figured it out. You know that if Idid less of this, and more of that. If I put more time into it. If I had more patience. More time. More desire to actually help my son. I really could do it.  If I accepted him more. If I cherished those little idiosyncrasies. If I didn't enforce the behaviors that get in the way of him making progress, he WOULD make progress.  But here's the deal.  I've tried most of that shit. I did more of that and less of this. I've put time into it. I've learned a shit ton more of patience than you'll ever have to.  I've also scraped the shit off my 13 year old son that he smeared on himself. I've washed a ton of the soiled clothes you sent home. And a ton more from home. I've repaired the holes ...

Today I realized that in less than two years we will almost certainly have to apply for guardianship for Sam. It all started with another person discussing the process they are going through to get guardianship. "How impaired does a person have to be to consider guardianship?" I asked?  And then answered my own question. Sam has tons of skills.  He's in eighth grade.  He receives Learning Support for English and Science because of the reading involved.  He's working at grade level in Math and History and is fully included in these and other classes.  But he doesn't understand money in a sense bigger than "I save for computer games."  We will work on skills of rent and bank accounts and saving up for cars.  I am not sure that he would accept a medical treatment that involved pain but would better his life without a lot of support and someone else to make the decision.  He can't plan a meal or a grocery list.  Although those are skills th...

For some reason, urination at our house has become a severe chore.  At least as it pertains to Nathan. Nathan did not potty train until he was 7.  It was truly a joyous day when he did.  He had gone through poop smearing, and taking off all his clothes which made containment...interesting. But when he was potty trained, it all got easier.  When we were out, we had to remember to take him to the toilet, because he could not tell us he needed to go.  He mostly still can't.  But when he had free access to a toilet, he would take himself. with little fuss.  We could not leave the toilet paper out, because he would flush the roll whole. Our biggest concern was getting him to pull up his pants and not walk through the house with his family jewels displayed.  That and the problem that as he becomes bigger, and more mature, taking him into public bathrooms with me becomes more fraught with social issues. So those were our big issues.  Until abo...

Nathan is in the middle of starting a new med that we hope will break down some of the barriers that keep him from talking.  His receptive (heard) language is rapid, faster even than his two brothers-ask him to do something and he does it.  His expressive (spoken) language varies from 2-3 words to none at all.  So we started memantine in an effort to help. However, irritability can be a side effect. We were also trying to wean his Risperdal.  To off, if possible.  And Risperdal helps with irritability. He has 1-2 days a week it seems that he just wakes up and doesn't go back to sleep. But when he woke up at 3, then 2:30am, then just didn't bother going to sleep All.  Night.  Long.  we gave up and restarted the twice a day 0.5mg risperdal Then when he started cycling up and down with irritability we increased back to where we had been - 0.5 in the morning and 1 mg at night.  He started sleeping again. He's getting a cold. Yesterd...

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....

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 issu...

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 breaki...

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 adjustm...

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 h...

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 th...

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 the...

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 b...

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 o...

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/suic...

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 doin...

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 t...

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 ...

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 ...