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Showing posts from 2014

An Open Letter to the Psychologist Who denied my Son's Hours

Dear Dr A
I'm not sure if you remember us. I expect you are very busy denying lots of requests at the end of the year.  It is such a pattern for your agency that I'm pretty sure you must earn a bonus. Use it wisely!  So, anyway, I'll remind you about us.
We requested eight weeks of an extra ten hours per week to help our 16 year old son with autism adjust to his first year of high school, and his first year of cyber school. We explained that he hadn't been able to school at home because of his brother, who is more affected by autism. So we made all the accommodations we could. I took him to my office. I help him between work and after. I love helping him with algebra, since that is my personal favorite. But explaining metaphors and racism in ways he can begin to understand is a huge joy to me.  It made all the loss of personal time worth it.
But he was still having trouble. His live lessons are in the morning, when I am busiest at work. In case you don't understand au…

Holidays: Why Halloween sucks sometimes

All parents have an idea of the traditions they will pass on to their kids.  The excitement leading up to Christmas and opening presents.  The trick or treating and getting to as many houses as you can in your allotted time.  The chasing across a field to get as many eggs as you can, maybe get a special egg that wins a prize.  Watching fire works on the Fourth.  Going on picnics in the summer and sledding in the winter.  Bonfires and Haunted houses in the fall.  So many fun things we did as kids that we can't wait to share with our kids.

And then our kids are born.  And they don't even vaguely fit into the mold we imagined. 

They are overwhelmed by crowds and changes in routines.  They can't envision the future and aren't excitedly enjoying the holiday buildup. 

They hate any clothes but comfy ones.  Dress up pictures and costumes are out. 

They don't want to or can't say "Trick or Treat" and don't understand going from door to door and never goin…

Level 1 Grievance

***** We are going to level 1 grievance to request that the TSS (therapeutic support staff) hours be increased. We had asked previously and were denied. Thus, the grievance. No one from CCBH showed up to the first meeting. They read the report and denied it. Now they are calling it in on a phone conference. If we had wanted an in-person meeting (of course we WANTED it) we would have had to drive almost 2 hours. I fully expect we will have to go to level 2 and bring a lawyer. This just REALLY aggravates me. But here is the report we will read. ******
Sam is in the ninth grade.  This year he began to attend cyber school for the first time.
Our reasons for entering him in cyber school are varied, but include: increased ability to work on executive functioning skills.  His assistance at school was so patchwork - aides, TSS and, at times, nothing - that essential information was not getting home in time for us to work with him on building the skills that will lead to independent comple…

Enough Butt-hurt to go Around

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, really miss sleep. A…

Masturbation

I touch my penis for different reaons. I touch it when I pee and when I wipe it off. I touch it when I take a bath.
If I rub my penis to make it feel good, that is called masturbation. Sometimes when i masturbate, white sticky stuff comes out of my penis. That is called ejaculation.
Masturbation is normal and nearly everyone does it. It is alright to mastubate. But there are rules.
1.  Mastubation is private. I should only do it in my bedroom or in the bathtub.  When I touch my penis, that is something I keep others from seeing by doing it in a room by myself.
2.  I try to keep my clothes and other things from getting messy from the sticky stuff called ejaculate.  I can use a tissue or a washcloth to catch the ejaculate that comes out. If I have pants and underwear on, I take them off before I ejaculate.  After I ejaculate I put the tissue in the trash or the washcloth in the laundry. 
3.  Masturbation should only be done once or twice a day.  I should not spend a lot of time doing it.  I …

I once knew everything, too

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 he…

Autism for First Responders

This is for a talk I'm giving to our local ambulance squad. I stole all of the ideas off the internet, but I'm not profiting ;)
The first step is to identify that a person is autistic.  Hopefully, that was part of the call.  However, this may not be the case.  An individual with autism may be pacing, rocking, repeating phrases, flapping their hands, flicking their fingers or making other repetitive hand motions.  They will probably not make eye contact with you.  They may have a strange affect, such as laughing when someone is hurt.  Their language may be very limited, or have a strange sing-song quality or they may use unusual words.  They may have a medical id on the usual spots or tied into their shoe laces.

Autism now falls under one heading as of the release of the last DSM.  HOWEVER.  Autism may be called ASD, PDD, Asperger’s syndrome.  In older individuals, especially, it may be called schizophrenia or MR.  Or it may not be named at all.  

Individuals with autism may deny…

Ultimate C(*&blocker

Yes, I went there.  Unfortunately, THERE is a lot of Life With Autism.

Last night my husband and I were all so romantic.  Kissing.  Even in front of the kids.  "Ew.  Stop that!"

Kissing all evening.  Then bed time for boys.  A beer.  Bed.  Kissing.

Clapping.

Telling us we were like an 11 on a 10 point scale?

No.  It's a stim.  Clapping so hard that he gets calluses on his hands.  That sometimes crack open.

THAT hard.

And laughing, hooting, singing, reciting at the top of his voice.  Definitely a romantic killer.

I went in with him.  Lots of hysterical laughter.  A fellow parent described it as not the happy laughter, but psychotic.  Like the Joker's laugh right before he blows up a building.

Then Sam complained he couldn't sleep (their rooms adjoin.)  I urged Nathan over and over to practice his calming techniques ('smell the flower, blow out the candle.)  A moment of peace.  Then more shouting and high pitched, loud laughter.

To my disgrace, I lost my shit.…

Accessibility Beyond the Physical

Someone said to me today:

 "Looking beyond today and next week and the next few months is a bigger job than a family should have to handle alone. As a community, what could we do to help?"

As a family with autism, we have learned to mostly retreat into our family unit.  So few people are out there who can and will help, that we have learned to do for ourselves.  School helps some.  And there are a (very) few places where we can hang out and be our real selves with support from our community.  But not many.

But soon we will not be able to form the fence that keeps us in and the badness (along with a great deal of goodness, I'm sure) out.  Our children will be adults.  They will require input from adult society.  School will go away and cease to be any kind of support.  We will get old and infirm.  And we will die.  

We will have to start gathering the resources that will assist our kids.  As much as possible, we will teach them to find resources for themselves.  

In an ideal w…

How Impaired for Guardianship?

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 that we will …

Peeing

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 about a year ago.  When (dum, dum, dum....DUMMM…

I'm Fucking Autism Aware Already, TYVM

Autism awareness month descends on us, as it has descended on us every April for the last 14 years (I assume we had autism awareness month back when Sam was first diagnosed.  I was too caught up in the anxiety of the time to notice.)  Scores of pictures of cute little kids will cross my Facebook feed.  People will call me and email me asking if I've seen the latest treatment, cure, information.

And frankly, I'm most irritated.

Nathan has been having a very bad time.  And, while we've had med reactions, and blamed it on colds or stomach bugs, the fact remains that he never seems to return to a pleasant baseline anymore.  He spends his day rotating between near lethargy and aggression.   We had to restrain him yesterday because he was trying to hit and bite us.  He hit Sam on Sunday, his BSC on Monday, and his little brother Tuesday as we were telling him that Nathan was calm and unlikely to hit.  My husband says that on average he is at an excellent level of emotional state…

The More Things Change. Sam is 16.

Sam turned 16 this month.  I feel like I should have something profound and deep to say about the progress he's made, my fears for the future, blah, blah blah.

What I have is a series of vignettes.

1.  Back when he was about 9, Sam asked when he could drive.  Thinking it was so far in the future I couldn't imagine it, I said "16."  He never forgot.  And brought it up over and over.  As 16 loomed closer and closer, I started telling Sam that it was not likely he would drive.  His attention cannot stay focused outside the thoughts in his head.  He may drive someday.  But someday wasn't coming fast enough.

On his birthday I told him "Happy Birthday!"  He smiled, and then it faded.  "My brain has not developed enough for me to drive."  I see his classmates going for their learner's permits.  And it is a small knife in my gut.

2.  Sam had a paper due for history.  I've been at a meeting and very busy with work.  His dad and TSS had told me…

I'm Worried

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.

Yesterday he woke up at 3:30, which isn't that …

rehashing a cure

Covering old ground here.  But, as things do, the topic of cure is rearing its head in the online community again.  And, as I say, I have a somewhat unique perspective.

I love all of my boys completely.  And I know that if Isaac and Sam were all I had, I might want ever so much more for them than I already do.  I might want for them to act more 'normal.'

Isaac with his stuck thoughts, immersion into Stampy's world of Minecraft, revving from calm to swinging fists if pushed too fast, too hard.

Sam with his always stuck thoughts, his constant stimming.  His love of girls, but uber-nerdiness limiting his likelihood of connecting with one.

But I do love them and accept their versions of autism.  Isaac who shares our love of science and expands our interests like a bomb pushes out the walls of a building.  Sam, who you think wasn't REALLY listening, but then comes out with amazing facts said in a matter of fact tone that lets you know it is the truth as stated in Wikipedia.

Charity: Doing Good Deeds and Accommodating

Years ago I was out with my younger two boys.

My little was was in the transition between baby and toddlerhood.  We did not yet know that he was on spectrum, and in this story it makes little difference.  He was in a stroller with all the wrangling that entails.

My middle son in the first 9-10 years of his life, in addition to being autistic, was in constant motion in a way that very few people I have ever seen.  He was able to get around our living room without touching the floor by using not only the furniture, but the windows and fireplace mantle and arms of the elliptical.  Three or four times in a minute.  Extremely impulsive.  My husband would carry him in a sling as a toddler and describe it like trying to control an octopus.  He would grab things you didn't even realize he was observing and while trying to wrestle that away he would grab something else.  However, now he was 5 or 6 and out of the sling.

We were going into a mall and someone held a door for us.  However, I…

Our Yearly Trip To Church

There are certain things I only would do for my kids.  Changing diapers on a six year old.  Wiping snot off a 12 year old.  Yelling at a 15 year old to stop eating his boogers. 

Going to church.

My husband and I have years of church under our belts.  We know all the hymns.  We have collected offering, helped with services, run the sound system (him, not me), cleaned.  We went to church schools, Bible schools, church camps.  We were in our church's version of Scouts.  We met at a college that is run by the church we grew up in.

And then we became atheists. 

I mean, we stopped going to church before then.  But then we admitted there was an issue we had mentally skirted for years.  We just didn't believe.  He knew it first.  It took me several more years.

So we don't go to church.   Except once a year.  On Scout Sunday.

As you can imagine, we are trying to fly under the radar here.  Now that scouts are opening up to gay scouts, we are a lot happier.  But they aren't openi…

What I want to be when I get OLD

I was thinking tonight about what kind of parent/grandparent I want to be to my children when they are adults.

I thought:
-I'll be there to babysit
-I'll ask them what they need instead of assuming
-I'll learn about what their kids need and like
-I'll take them for weekends so my kids can rest.

There was a lot more.

And I realized that was all reactionary - those are the things I wish our parents would do for us, because of our special needs.  I have no idea of what my kids will need.  I don't want to parent in reaction, because it leads to filling needs that aren't there.  And missing other needs that are there.

How will I balance the needs of my kids?

First, I will ask.  What do you need most?  

Second, I will remember time is the most important thing you can give.  Someday I will be too old and infirm, and eventually too dead, to be useful.  The most important time is now.  Give generously of time, because it means so much when you are actually there.

Third,…