Monday, October 29, 2012

Positioning for Success

Middle Son has a service dog, Willow, who we've had for about a year now.  Middle Son is a wanderer.  Given the opportunity he will slip out unlocked doors, open windows, or climb over fences.  Any time he goes outside, I strap the dog to his belt.  It's very difficult for a 12 year old to climb over a fence with a 90 pound dog strapped to his waist.

Yesterday we went to the grocery store.  It was me, Youngest Son, Middle Son, and Willow.  I forgot to put Middle Son's belt on, so I had him hold the leash.  It seemed like he and Willow had a lot more trouble than usual.  Willow was distracted and looking at other things, Middle Son kept pulling in different directions, etc.

We went to the grocery store again tonight.  This time I made sure I had the belt.  They both seemed much more focused and calm.

Both dogs and children with autism are driven by routines.  Sticking to the familiar script makes them both more successful.

Sunday, October 28, 2012

Child Proof Locks Aren't Anymore

I got official confirmation that Middle Son can now open childproof locks.  I found him eating from a bottle of gummy vitamins.  He had the lid in one hand, and was eating straight out of the bottle.

Picking Up

This morning, Youngest Son (who is developmentally typical) wanted to watch TV.  I told him that before I turned on the TV, he needed to put his toys away.

To my surprise, rather than arguing or dragging his feet, he said "Thanks for reminding me Daddy!" and scurried to put everything away.

Later in the day, he came running out of his room and said "Daddy, come look and see how tidy my room is!"  It was picked up, nothing on the floor.  I was slightly amazed.  He told me later that he had put some things under the bed.

Saturday, October 27, 2012

Surprise Party

Youngest Son is turning 5 in a couple of weeks.  I was talking to my ex about his birthday party yesterday.  She said that he told her that he's having a "surprise cowboy party."


We met with several of Oldest Son's teachers yesterday.  He's struggling with homework and figuring out what he is supposed to do, especially with math and science.

I'm concerned about the science teacher.  They have a new science curriculum that is "exploratory."  The students make lots of choices about how the go through the material, and there is less directed learning.  That's difficult for Oldest, his Asperger's gets in the way of that sort of executive function.  The science teacher said something to the effect of not understanding why Oldest was having trouble with this.  I got the sense that she doesn't think he should need accommodations.  Oldest is smart, and he's able to do the work, but he has major trouble organizing things, and his thought process tends to be slow.

It's always frustrating to see a teacher that doesn't want to provide accommodation because he seems "normal" enough.

Thursday, October 25, 2012

Celebrating Clothing

On Middle Son's school note today, the "Celebration" was "wore all clothing appropriately to school today."


A couple of weeks ago I cut Middle Son's hair.  I had someone helping me, but it still a huge ordeal.  By the time it was done I had bruises, and one of the towel rods in my bathroom had been torn off the wall.

I was talking with my care-giver about it last night.  She had been talking with my ex about, and about how long Middle Son's nails are (which was something we talked with his teachers about at school last week).  The care giver said that normally she's opposed to sedatives, but in Middle Son's case she thought it was worth talking to his doctor and getting a prescription so that we could do "hygiene day" every 2-3 months.

I think that is a good idea.  I can usually manage to trim his finger nails without a big struggle.  Toe nails are harder.  And frankly, I'm not sure I can cut his hair safely any more.

Still Eligible for Services

This morning a case worker from the Department of Developmental Disabilities came out to do Middle Son's annual eligibility evaluation.  It was pretty mundane.  Unsurprisingly, he still qualifies for services.

I did get a kick out of one thing that she said.  This was the first time we've done the evaluation at my house. In previous years it has been at my ex's house.  The case worker commented about how calm and peaceful things were at my house.  She said that must be a relief to have things so much more peaceful.

Since the divorce, that's been one of my primary goals.  I want a calm, orderly household for myself and my children.  I think that is important for all children, but it is especially important for kids with autism.  Middle Son is hugely oriented around routines, doing the same thing in the same way at the same time.  I think that is a significant part of why his behavior is better at my house.

Wednesday, October 24, 2012

Organizational Skills

Oldest Son's high school is giving out laptops to all students to use for the school year.  There is a form that has to be filled out, signed, and turned in to the English teacher.  It's due today, so last night we printed out the form and signed it.  I asked him where he was going to put it so that he would remember to turn it in.  He said that he would put it in the front of his binder.

This morning, as he was about to leave, I asked him if he had the form in his binder.  He said he thought so.  I looked on the kitchen table and saw that the form was still there.  He grabbed it and stuck it in the middle of his binder.  I reminded him that he'd said he was going to put it in the front.  So he moved it.

After I got to work, I sent an email to his English teacher telling her that Oldest did have the form, and asking her to prompt him if he forgets to turn it in.

More Problems with Clothes

Yesterday afternoon, I got a text from my ex-wife.  She said that Middle Son keeps taking his clothes off and it was driving her crazy.  She wanted to know what he does at my house.  I texted back that I let him be naked in his room and the bathroom, and occasionally he runs from his room to the bathroom naked.  She said that that was what he is doing at her house.

But he's going from his bedroom to the bathroom at the other end of the house, instead of the bathroom next to his room.  So he's running naked the entire length of the house.

Middle Son has a knack for finding the loopholes.

Tuesday, October 23, 2012

Two Hands

We had Middle Son's special ed eligibility meeting yesterday.  One of the things that we talked about was the fact that he rarely uses both hands when he is doing something.  He also doesn't cross hands from one side of his body to the other very often.  Which is a developmental level typically meet in toddlerhood.  We were trying to think of things that he uses both hands for, and had a hard time coming up with things.

Last night after dinner, I noticed something.  He scrapes his plate after dinner and uses two hands, one to hold the plate, and the other to scrape it with a fork.

Sunday, October 21, 2012


I was looking through Middle Son's notes from school for the week.  In addition to the one about wearing underwear, there was one that said "wearing clothes properly, not backwards and inside out."

Saturday, October 20, 2012

Cost of Raising a Child with Autism

I was reading an article last night about the challenges of paying for the care of a special needs child when the parents are divorced.  One of the things that caught my eye was this:
Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents.
I'm extremely fortunate financially--I earn enough money to be able to pay for a care-giver who is specially trained and has specific experience caring for children and adults with special needs.  Last year I spent about $40,000 on care for Middle Son to make sure that he had appropriate supervision after school and during the summer.  Plus a couple of thousand more for his medical expenses (neurologist, seizure medications, etc.).  And several thousand for social skills groups and other costs for Oldest Son.  My total expenditures related to their special needs were probably close to $50,000.  According to Census data, that's about the median household income in the US.  Very few parents can cover those kinds of expenses.

The author, Karen Czpanskiy, discussed how our family laws don't really address the problems that come up with special-needs children.
Today, divorce law largely ignores the economic problems faced by the divorced parent of a special needs child. We need a new post-divorce remedy, which I am calling "chalimony." It would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child's special needs. The child's other parent could avoid paying chalimony if he or she were meeting enough of the child's needs to permit the primary parent to work full-time.
I remember a conversation with my ex shortly after we got divorced in which she complained that she would never be able to work.  Exactly the short of situation that Czpanskiy is envisioning.  Ultimately, we resolved it by having Middle Son move in with me, and I hired a paid caregiver.  But if I hadn't had the financial resources to do that, I don't know how we could have addressed the problem.

Friday, October 19, 2012


The school sends home a note with Middle Son each day, that lists things he did well, celebrations, and things he needs to work on.

This week, one of the things mentioned as needing work was "Remembering to wear underwear."

Thursday, October 18, 2012

One Bit of Information

Sometimes one bit of information makes all the difference in how people respond to something.

Middle Son is profoundly autistic.  He doesn't speak, but he laughs and hums and grunts.  He loves to jump and run and spin.  Sometimes I bring him along to Oldest Son's Boy Scout troop meetings.

I can ALWAYS tell who knows about his autism and who doesn't.  As he is humming or giggling or spinning or jumping, the people who know look at him warmly and affectionately.  The ones who don't glare and scowl.

Via liberal japonicus I saw a story in the The Guardian about Glenn Campbell, who now has Alzheimer's. There was a quote from his daughter:
"When he messed up, people were coming up to me after shows and saying 'Is your dad drunk or is he using again?' It upset me. Now this is out they're just going to be supporting and loving him rather than angry that they paid to see him."
Different condition, but the same result.


I was listening to "Guardian", by Alanis Morisette today.  The chorus really got to me.

"I’ll be your keeper for life as your guardian  
I’ll be your warrior of care your first warden  
I’ll be your angel on call, I’ll be on demand   
The greatest honor of all, as your guardian."

I think all parents feel that way about their children.  But when you have a developmentally disabled child, those feelings are especially powerful.  I know that Middle Son will never be able to take care of himself.  He will always need someone to be his guardian.