Monday, December 31, 2012

Trash

Middle Son was up and moving around in the middle of the night last night.  I heard him, but since he does this occasionally and we haven't had any major problems for a long time now, I didn't get up to check.

When I got up in the morning, the trash bag had been taken out of the kitchen trash and was sitting next to the recycle can.  Middle Son takes the trash out and really seems to enjoy doing it.

I think he tried to take the trash out, but couldn't get out the front door.

Sunday, December 30, 2012

Anything

The needs of my children is endless.  This is true of all children, but it is especially true of children with disabilities.  I believe that great things are possible.  But even with great improvement, Middle Sons's needs are endless.  As is my devotion to him. To anyone who will meet the needs of my children, my offer is likewise endless.

If you can meet the needs of my children and keep them safe, everything I have is yours, no questions asked, no strings attached.

Saturday, December 29, 2012

When Spitting Is Good

When Middle Son was a toddler, he ate a limited range of food.  Very limited.  I remember once when we had a sitter come to watch him, MomC told the sitter that there was a list of the foods he would eat on the refrigerator.  The sitter laughed and said "you can list all the foods he eats on a sheet of paper?"  I responded that actually we could list all the foods he ate on a post-it.

Middle's diet at the time consisted of foods that were brown, dry, and crunchy.  He ate dry toast, cereal with no milk, cookies, crackers, and chips.  NOTHING else.

For a while Middle worked with a "feeding therapist".  She was an occupational therapist who specialized in sensory issues around food.  I remember the progression that she went through--size, color, texture, taste.  She took goldfish crackers (which he would ate).  Then she got larger goldfish and coaxed him to eat those.  Then she got different colored goldfish.  Then she put a little peanut butter on them (which was texture and taste at the same time).

Eventually, he started trying other things.  First he would touch them with his hands.  Then he started putting them in his mouth.  Then later he started chewing on them.

But he wasn't ready to swallow.  So he'd chew on them and spit them out on the floor.  My mother-in-law tried to stop him and MomC and I both jumped to intervene.  We were really excited that he was chewing on a new food and didn't want to do anything to discourage it.

I had never imagined that I would see spitting food on the floor as a good thing.  And then I did.

Friday, December 28, 2012

Bath Time

Last night I was giving Middle Son a bath.  I got really excited when he started pouring water on his head.  He doesn't like anything touching his head, which means that washing his hair is very difficult.  There he was, doing part of the work for me!

Then it got even better.  After I put shampoo on his head, he started rubbing the top his head and working up a lather.  Shocking!  Thrilling!

Then when he seemed to be done, I went to rinse his head.  And he reverted back to his typical behavior.  Didn't want that water anywhere near his head.

By the time we were done I was drenched, and there was a towel lying in the bottom of the tub.

Thursday, December 27, 2012

Already Asleep

Youngest Son (age 5) went into his bedroom on his own tonight, while I was giving Middle Son a bath.  I went in to check on him when the bath was done.  He was snuggled up in bed.  He looked up at me and said "Daddy, I'm already asleep."

How cute is that?

Getting Married

My girlfriend and I are planning to get married.  We don't have a date yet, but probably in the fall of 2013.  She (and her daughters) have spent a significant amount of time with my boys over the last few months.  I introduced her to MomC a few weeks ago.

Last night I told Oldest Son.  He was very surprised.  The first thing he said (and he led by qualifying it, saying he knows it won't happen) was that it would be easier for him if his mom got married at the same time.    Then he wanted reassurance that he will still get to have his own room.  I told him he will keep his own room.  My girlfriend has two teenage daughters and he most definitely will not be sharing with them.  Then he said he wants us to get married someplace cool, like Vegas.  Vegas is a possibility that we've been discussing.

He also asked if I wanted him to tell his mom for me.  I said no.  Talking to MomC about this is my job, not his.

As soon as we were done talking, I texted MomC to be ensure that I was the one delivering the news.  She congratulated me.   She apparently was expecting us to get married this week.  She thought maybe we'd stopped in Vegas on our way to visit my family for Christmas.

She also thanked me for telling Oldest while he is going to be at my house for a while so that I will be around  as he is processing it.  That was very much a conscious decision on my part.  The boys are with me from the 26th to January 2nd, which is the longest period of time they ever spend at my house.  I told Oldest on the first night so he would have as much time as possible to work through it before going back to MomC.

I expected that this would be a difficult piece of information to take in and I wanted to be able to help him with it as much as possible.

Monday, December 24, 2012

Second Time

I'm reading Far from the Tree, by Andrew Solomon.  There will likely be many posts that come out of this.  There is a chapter about the experiences of families with autism.

I was struck by a passage from a woman who's second child was diagnosed with autism. 
"My son seemed totally normal, after dealing with my daughter," she recalled.  Unlike her sister, however, she had no experience of normal children.
 
Our experience with Middle Son was very similar.  Oldest Son was a very demanding infant and toddler.  He wanted to be held all the time and required constant attention and interaction.  Middle Son was quiet and seemed content on his own most of the time.

I remember MomC saying something like "no, there isn't anything wrong with Middle Son, he's nothing like Oldest Son."

Sunday, December 23, 2012

Austin

I'm in Austin this week, visting my family for the holidays.  Naturally, everywhere I go there are signs that say Austin something-or-other.  More often than not, when I look at those signs I see "Autism" instead of "Austin."

Friday, December 21, 2012

Writing

I was reading Time magazine's profile of President Obama and I was stuck by one of the quotes:
"In my life, writing has always been an important exercise to clarify what I believe, what I see, what I care about, what my deepest values are.  The process of converting a jumble of thoughts into coherent sentences makes you ask tougher questions."
I like that quote.  That's one of the things that I'm finding as I blog more regularly.  Part of the attraction is the beauty that lies in a clearly crafted thought.  And the more frequently I write, the more frequently that beauty comes into being.

Wednesday, December 19, 2012

Flying

While I was traveling yesterday, I remembered some things that I had forgotten about the first time that I flew with Middle Son.  Middle was about 5 years old.  He sat in the aisle seat and I sat next to him.  We were up near the front of the plane, so lots of people filed past us.  As they walked past, Middle would tap on their luggage.  Some people looked irritated, but most people thought it was cute.  One man was carrying a big African drum.  He gave Middle a big smile when Middle drummed on it as he walked past.

The other thing I remember is the way Middle clung to me.  As soon as the engine started, he grabbed my arm and pulled it across his body, like the shoulder belt in a car.  He held it clamped there for the entire flight.  Every time I tried to move my arm, he grabbed it and pulled it back. 

I was his safety belt for the flight.

Services

Yesterday on the airplane, I found myself seated next to a woman who was reading proposal from the state of California about autism services.  I asked her about it and told her that two of my three sons have autism.  We spoke for a while.  She was serving a state board that was reviewing autism services.  California law says that people with autism have a right to services, and she was involved in writing recommendations for ensuring that minority communities are able to access their services.

For lower-income parents things like getting time off work and getting to appointments via public transit are major obstacles.  I commented on how financially fortunate I am.  I pay a caregiver to transport my children to appointments, and I don't have problems leaving my office for a couple of hours to go to school meetings or meet with the psychiatrist and neurologist.  Most people can't do that.  I pay caregiver more than lots of people make.

I asked her about rates of diagnosis among minority communities.  I wondered if they are diagnosed at a lower rate.  She said that they are diagnosed at the same rate, but they tend to be diagnosed later.  Where a middle-class child would be diagnosed at 3, a lower-income child won't be diagnosed until 4 1/2.

Let another way in which it is good to be a high-income white male.

Monday, December 17, 2012

Leaving for a Week

Tomorrow morning I leave for Christmas vacation.  My girlfriend and I are going to visit my family in Texas.  The boys will be at MomC's from tonight until the morning of the 26th.

I got a text from my X.  She asked me to give Middle Son a bath, because he probably won't take one at her house.  In the next week.

Sunday, December 16, 2012

Quiet Day

The boys are all at MomC's today.  Oldest Son will be coming over about 7.

Saturday, December 15, 2012

Father's Network

I went to a meeting of the Father's Network this morning.  It's a group for men who have children with disabilities.  I've gone off and on for almost ten years--just after Middle Son was diagnosed.  Today was the first time I had been in months.  There was a man there who I hadn't met before who has a 4 1/2 year old son with autism.  We talked for a while.  I saw echos of a lot of things we went through with Middle in as I was watching his child.

I was glad I went.

Friday, December 14, 2012

Teaching Listening

When Middle Son was very young, around 20 months, we began to be concerned about him.  He didn't respond at all to his name.  The first thing that we did was have his hearing tested.  When the hearing tests came back positive, we moved on to other tests which eventually led to the diagnosis of autism.

Now we knew that he could hear, but he still didn't listen.

When he was about 2 1/2, he started climbing up on the kitchen counter.  His favorite thing to do was stand on the lip of the sink and jump up and down.  This was very alarming.  The lip of the sink is a very small surface, it's often wet, and it put Middle an entire body length above the floor.  I was afraid that he would fall and hurt himself.

MomC and I would tell him to get down and he ignored us.  So I decided to devote some serious effort to the problem.  I stood at the kitchen counter with a magazine.  Every time Middle climbed up on the counter I would say "no Middle, get down."  I would pick him up and put him back on the floor.  Then I would read my magazine for a few minutes until he climbed back up on the counter and we'd repeat the process.

After a couple of weeks of this, when I would tell Middle to get down he actually got down.  It was a huge breakthrough.  By this team we were working with speech therapists, behavior therapists, and lots of other professionals.  One of the things I learned from them was the utter necessity of consistent behavior with Middle.  In a lot of ways it reminds me of training a dog.  I don't like the analogy--Middle is a human being, not a dog--but it conveys information well, so I use it.  When you are training a dog, they tell you to always make the dog obey a command; communicate to them that disobedience is not an option.  If you tell him to sit and he doesn't, kick his back feet out from under him so that he falls on his butt.  Then say "good sit."

So I took get care about when and how I asked Middle to do things.  I gave very simple, clear, one-step instructions.  Rather than saying "put your coat away," I would say "come here" and wait for him to comply, "pick up your coat" and wait, "go over there" and wait,  then finally "hang your coat on the hook."  If at any step he didn't do what I asked, I would go to him, take his hand, and physically take him where I had told him to go.  Eventually Middle concluded that if I told him to do something he was going to end up doing it, so he might as well do it now rather than wait for me to come get him.

MomC never made that investment.  She finds it very difficult to get him to listen.  She complains that he ignores her.  I've seen him do it.  More than once when I've arrived at her house to pick up the boys, Middle has been out in the back yard.  She calls for him to come in and he ignores her.  She calls 2, 3, half-a-dozen times, and it's like he doesn't even hear her.  Sometimes I want to yell at her to get her rear end out there and make him come inside.  As long as she tolerates him ignoring her he will continue to do so.  Then I call out to him to come get in the car to go to my house. He immediately comes inside.  MomC glares at me and says "that is soo frustrating."

I taught Middle to listen to me.  She never taught him to listen to her.

Thursday, December 13, 2012

P.P.S. on Clarity

Yesterday I was talking about the Clarity post with a colleague.

He suggested that another aspect I'm probably dealing with is emotional clarity.  He has a relative with Alzheimer's who is beginning to lose words.  He believes that this is immensely frustrating for her--she wants to say something but literally can't find the words.  He said that he is trying to learn to engage with her emotions even when he can't engage with her verbally.

I was thinking about that tonight, and the various ways it shows up.  I remembered the Hamming It Up post I wrote a few weeks ago.

When Middle Son came to request something from me a little while ago, I went out of my way to be excited about his request.  I put some juice into my words and my posture.  I wanted to communicate to him "hey buddy, I REALLY want to know what you want so I can HELP you!"

It worked.  He frequently makes very small gestures that are hard to interpret then runs off before I've figured it out.  This time, he pointed clearly and waited until I had taken what he wanted off the shelf before he ran to the table.

I knew this.  I've seen it before.  And I forgot.  I'm glad that I was reminded.

Wednesday, December 12, 2012

P.S. on Clarity

I was discussing the Clarity post with someone last night, after writing it but before publishing it.

He pointed out that my blogging has likely contributed to my ability to express things clearly.  That's something that I hadn't considered.  I suspect he is correct.  I spend a fair amount of time fiddling with the exact wording of my posts.  I want to maximize the odds that readers (assuming I have some) will hear clearly what I am trying to express.

Clarity

One of the things that I value is clarity.  Clarity of thought and clarity of expression.

My employer periodically sends managers to the Dale Carnegie leadership training.  I did it a couple of years ago.  My favorite exercise was something they called value cards.  They gave us each a deck of about 50 cards that said things like "commitment", "fairness" and "lifelong learning."  We were asked to sort through the deck and pick the six most important, then remove two, then remove two more.  Thus identifying the two things we valued the most.  There were also blank cards if we wanted to add something.  I used one to add "clarity".  As we discussed it, I said that I'm perfectly willing to do stupid things for stupid reasons as long as we are all clear that that's what we're doing.

Last week I was working on a proposal with a couple of co-workers.  One of them commented on how well I explain things.  That's happened multiple times during this project.  I'll say something and then someone will say "ooh, that's really good, write down what he just said."

I responded that it's because I have to be able to explain things to my autistic children. Unless I am super clear, Middle Son doesn't understand what I mean.  To a (significantly) lesser degree the same is true for Oldest Son.

That was a minor revelation for me.  It had never occurred to my kids are one of the drivers of my urge for clarity.

Monday, December 10, 2012

Sick

Oldest Son and I were both sick this weekend.  He was sick on Friday and Saturday, I was sick on Sunday.  Which worked out well, he was able to do a lot for Middle and Youngest on Sunday.  Ultimately I ended up calling MomC to come and pick them up early.

At one point Sunday afternoon, Youngest came into my room and said "Daddy, do you need anything?"  It was very sweet.  I had him bring me a glass of water.

Friday, December 7, 2012

Patience

The man who runs the socials skills groups that Oldest Son goes to sent out an email today to all of the parents.  He said
"As we enter the holiday season, it is a time to rest and reflect. Whether it has been long IEP meetings or homework ‘moments’, you’ve been there for your kid this year. I am continually amazed at your strength, humor and insight." 
I posted that on Facebook.  A woman I went to high school with who has a developmentally disabled daughter posted
"As am I! As. Am. I! Your patience inspires me to be more patient with my daughter." 
Middle Son is the most extraordinary teacher of patience I can ever hope to meet.  I do my best to be a worthy student.

Strong vs. Tough

I don't think of myself as tough.  I feel every slight, every scratch.  They all hurt.

However, over the past few years I have come to realize that I am strong.  Very strong.  When circumstances require I am jaw clenched, fists curled, in-your-face, f* you strong.  Even if I have tears before and after, I have the strength to act in the moment.

Over the past three and a half years, I've gone through many trials and tribulations.  I've gotten divorced.   I've stood up for my children, sometimes even against their mother, to ensure their needs were met.

Sometimes it is relatively easy.  When Oldest Son was having major trouble at school, it wasn't that hard to get what I wanted.  I had invested enough time and energy with the school district.  I remember MomC expressing surprise that they agreed to pay for a private school placement for him for 7th grade.  I wasn't.  It was clear to them that we knew what he needed, what the district had to offer (not enough), and most importantly that I couldn't be rolled--if they proposed something that didn't meet Oldest's needs they would have a fight on their hands.

Other times it is hard.  Very hard.  About a year and a half after our divorce, some things happened at MomC's house that I was very unhappy about.  I told MomC that it was time for Middle Son to come and live with me.  I have powerful memories of the moment.  I was standing on the curb outside the doctors office.  My jaw was clenched and my fists were curled.  MomC was initially surprised.  Then indignant.  Then she spun on her heel and walked away.  And a few weeks later I had a nanny hired and Middle was living with me, going to MomC's on Tuesday and every other weekend.

Some time later, my mother related to me a conversation she had with my brother's wife.  She said that she had never imagined that I would turn out to be so strong.  My response was "me either."

I think that most parents find levels of strength they didn't know that they had when they realize that they are responsible for the lives of the new human beings that they've created.  And if their children turn out to have extraordinary needs, they may discover extraordinary strengths.

Thursday, December 6, 2012

A Fine Mess

Middle Son pried the lid of a bottle of shampoo.  And apparently shook it hard to empty it.  The tub, shower curtain, and wall are covered with rosemary tea-tree shampoo.

At least it smells really good.

More Scrubbing

Tonight Middle Son and I washed a couple of pots after dinner.  This was a little harder than the mirrors and windows.  It requires more complex motions with your wrists and fingers, and Middle seemed to have more trouble with it.

Wednesday, December 5, 2012

Scrubbing

Middle Son has been working on cleaning at school, mostly oriented around the kitchen.

Tonight, I watched him take the scrub brush out of the sink and scrub the door of the microwave.  I asked him if he wanted to clean some more, and he signed yes.

So I got the windex out, and helped him spray the microwave door, get a paper towel, and wipe it down.  He was jumping up and down and seemed very excited.  So I asked if he wanted to do more, and he signed yes again.  We went into the bathroom and cleaned the mirror.  Then we went into the other bathroom and cleaned that mirror.  He still seemed to be having fun, so we took on the dirtiest task of all, the window in the back door.

That window is always filthy because Willow jumps up and puts her paws on it when she wants to come in or go out.  Then he seemed to be done, so we put the windex away.

Tuesday, December 4, 2012

Meds

MomC kept all three boys tonight.  Normally, Oldest Son would have been at my house.  She wanted to take them to see the lights at the Botanical Garden, and this week it's free.  So that was fine.

The good part was that I got to go see my friends at Boardgame Night, who I haven't seen for months.

The bad part was that about 8:30, she called to tell me that she didn't have meds for Youngest Son.  I told that she could go over to my house and get them--Oldest Son has a key so he can get into the house.  She declined.  She said they'd just gotten home and she didn't want to go back out.

Monday, December 3, 2012

How Did You Know?

Middle Son has always been a climber.  Even as a toddler, as soon as he could get his fingers on top of something, he'd climb onto it.  Somewhere there is a picture of him curled up asleep on top of the refrigerator like a cat.  That happened before he was three.

The fall after my divorce, Middle Son grew tall enough that he could get his fingers on the top of my backyard fence.  And as soon as he got his fingers on it, he started climbing over the fence.  Usually he just went around to his favorite shrub in the front yard and started pulling leaves off of it.  But I wasn't confident that it would stay that way.

I became very careful about watching him when he was in the back yard.  Pretty quickly he stopped trying to climb over in any of the spots where I could see him.  Unfortunately, there was a blind spot behind the garage where I couldn't see him.

So I bought a surveillance camera that hooked up to my laptop.  I put it up on the side of the house where it covered the blind spot.  The first time I saw him starting to go over the fence, I ran out into the back yard calling for him to stop.  When I got around to where I could see him, he was turning around slowly and staring.  His body language and expression said very clearly "how did you know what I was doing?  How did I get caught?"

When I moved to my current house, I didn't bother to set up the camera.  Shortly after we moved in, we got Willow, his service dog.  Now I tether them together and she makes sure he doesn't go over the fence.

Saturday, December 1, 2012

Dining Room Chair

My boys are with MomC this weekend, so I'm writing a sort of archival post, something from the past.

For the longest time, we had trouble getting Middle Son to stay at the table for meals.  He'd come to the table, take a bite or two, then run off again.  It was very frustrating.  One, it made it difficult to eat a family meal, and two, it made it much harder to get Middle to eat enough food.

The first summer post-divorce, MomC's mother and step-father replaced their patio furniture, and they brought me their old set (they like me, and we've stayed on pretty good terms through the divorce).  It was a table, umbrella, and six chairs.  One of the chairs was an outdoor rocker.

On nice summer days, we'd eat dinner outside.  It was pretty out in the backyard, and if Youngest (who was a year old) made a mess on the floor I didn't have to vacuum it up.

I noticed that something unusual was happening.  When Middle Son sat in the rocking chairs, instead of wandering all over the place he stayed at the table.  Which was amazing.  He'd NEVER stayed at the table.  I brought the rocker inside and put it at his place at the table.  He stayed at the table inside.

I ended up buying a pair of outdoor rockers.  I put one at the kitchen table and the other in his room.  Middle is hard on the chairs.  He rocks vigorously and they get metal fatigue in the hinges and break.  In the last 3 1/2 years he's broken four chairs.  When they were on closeout at the end of the summer I bought an extra two-pack, so I have them in boxes in the garage, waiting to be needed.

The chairs have turned out to be a good investment.  We now have family dinners and everyone stays at the table.

Friday, November 30, 2012

Paying Attention

One of the things that Middle Son has done over the years is teach me to pay attention.

I remember reading that people with low-functioning autism live in a world of their own.  That is certainly my experience with Middle Son.  I often describe him as living at right angles to the rest of humanity.  Occasionally he touches down on Planet Consensual Reality, but unless you are are paying attention, you won't see it and you will miss out on the chance to connect with him.

When Middle was born we had a Golden Retriever named Brandy.  Brandy was amazingly tolerant of Middle Son.  I remember watching him plant a knee in her eye socket and climb over her head, and she didn't even flinch.  But I couldn't tell if Middle was aware of her as anything other than an obstacle on the floor.

The summer that Middle was 3 we had Brandy shaved so that she wouldn't be so hot, or leave so much hair all over the house.  Shortly after, I saw Middle walk up to Brandy and poke her very gently with one finger.

He had noticed that she looked different.  That showed me that he was in fact aware of the dog.  He only did it that one time.  I could easily have missed it.  And then I wouldn't have known.

Thursday, November 29, 2012

Shoes

When Middle Son was getting dressed for school this morning, he put his shoes on the wrong feet.  And he left them that way.  He appeared to be perfectly comfortable.

I saw that and remembered that Oldest Son used to do that as well.  From about ages 3 to 5 (I don't recall exactly, but I think it was something like that), he insisted on wearing his shoes on the wrong feet.

Middle Son craves proprioceptive stimulation; he wants pressure on his body.  He likes to be squeezed and mushed.  He likes to jump off of things and feel the impact.  It's a common craving for people with autism.  One of Middle's occupational therapists said that their nervous systems are under-sensitive to proprioception, so then seek out additional stimulation.

When Oldest Son was wearing he shoes on the wrong feet we speculated that it was driven by a desire for pressure.  Middle doesn't do it often.  Most of the time he gets his shoes on the correct foot.  But if he doesn't, he either doesn't notice or doesn't care.  I don't know which.

Wednesday, November 28, 2012

Hamming It Up

One of the things that I do when I'm engaging with Middle Son is use exaggerated gestures and facial expressions, and generally amp things up as much as I can.  I started doing it as a way to get his attention--he lives mostly inside of his own head, so it can take a lot to break through.

Yesterday I was visiting a friend of mine who is in the early stages of what will probably be a very difficult divorce.  He had his two younger children with him that evening.  I noticed that when I was talking to his kids, I was pretty animated.  They were playing with bubbles and said they had built a "bubble machine" in one of the bedrooms.  I got all excited to see it, which they loved.

I didn't put the two together until this evening.  Middle Son came to me while I was sitting at the computer.  He tried to get me out of the chair.  He wanted me Rather than get up, I pulled my feet up off the floor.  So when he pulled on my hands, he pulled the chair across the room until it ran into the rug in the kitchen.

He didn't like it, but I giggled and rolled the chair back.  We repeated it several times.  I kept laughing and making funny faces.  I spun the chair around.  I pulled him in close and then pushed back out.  After a couple of repetitions he was laughing too.

Middle Son, as is typical with autistic children, wants to repeat the same patterns over and over.  He wants to play the same way every time.  This shows up with Oldest Son as well.  A couple of years ago he went to visit my parents in Austin.  When they asked what he wanted to do, he wanted to go to all the places we went on our last trip there.  He was trying to repeat the same happy experience.  Which is what Middle does when he wants me to go in his room and tickle him over and over and over.

Tonight, by hamming it up and acting like it was lots of fun, I was able to move Middle Son from trying to repeat his usual pattern to enjoying a different way of playing with me.

Tuesday, November 27, 2012

Telling the Difference

A friend of mine commented that she really liked the Sundays post.  Which prompted me to go back and look at it again.

My favorite part is the end, where I told Oldest that he needs to start learning to tell the difference between someone wanting him to do something is good for them, versus something that is good for him.

It occurs to me that it is worth building on this idea with Oldest.  This is an important lesson to learn when dealing with salesmen of any type (especially the ones who want to sell you an extended warranty), when dealing with your personal finances, or when dealing with high-school peers.  I think I should create a curriculum for this.

Monday, November 26, 2012

The Kitchen


I think Middle Son has been working on kitchen tasks at school.  In the last week, he's suddenly gotten interested in cleaning.

This weekend he was dabbing at the kitchen table with a napkin after dinner.  I gave him the spray-cleaner and a towel and he wiped down the table and part of the kitchen counters.  I had to do some areas that he missed, but still!  He was also playing with the scrub brush from the sink.

Tonight he was playing with the scrub brush again.  I asked if he wanted to wash the pots from dinner, and he signed yes.  So, hand-over-hand, we washed out two pots.

More Morning Trouble

I got a text this morning from MomC about 8:00.  As on Wednesday, she was not able to get Middle Son out of bed and dressed for school.  He'd been awake for 45 minutes, and was just laughing at her when she told him to get up.  She said that if she can'tget Middle Son out of bed, then he will have to sleep at my house every school night.

Which I am not happy about.  Getting your children to school is one of the basic parental responsibilities.  What does that mean if she gives up on that?

MomC had emailed Middle's teacher last week asking if she had any ideas.  She suggested using some sort of reward system.  I doubt that will work.  We've tried rewards before without any luck.  He often seems to be almost completely self-contained--he just doesn't  care that much about rewards.

Sunday, November 25, 2012

Bubble Bath

Middle Son generally speaking doesn't like bathing.  He enjoys sitting in the warm water of the tub and splashing a little, but he doesn't like being soaped and scrubbed and he hates having his hair washed. There have been times in the past when he liked taking baths.  In fact, there were periods when he would take 5 showers a day.

We are not in one of those periods now.  It's been very difficult to get him in the tub.  MomC told me that she has pretty much given up.  She's worried about how she's going to keep him clean enough that he doesn't get b.o. during the week of Christmas break that he is at her house.

As I was getting the bath ready for him today, I noticed that there was bubble bath in the cabinet under the sink.  I haven't used bubble bath with him for a long time.  He liked it.  He got into the tub and sat down without any coaxing.

He stood up and let me scrub him with the loofah without much trouble.

Washing his hair was still tough.

Saturday, November 24, 2012

Doing a Battle

This morning Youngest Son started dragging toys out into the living room and told me he was going to do a battle.

He put down some blocks and plastic rocks and trees.  He informed me that this was the "course."  Like in Super Smash Brothers.

Then he lined up action figures and plastic animals in two opposing lines, and told me to come play.  I looked at my side, then ran into his room and came up with the dragon that I bought him for his birthday and said the dragon was on my team.

We fought the battle.  Then he set up the course again, re-arranged the sides, and we fought another one.  Then a third.

It brought back a memory from my childhood.  It was while we were living in Topeka, so I was about the same age as Youngest is now.  I had set up my plastic army men.  My dad brought out the movie camera and filmed an epic, the Battle of the Dining Room.

Friday, November 23, 2012

More on Small Dog

This morning Middle Son was once again very interested in Jack, the small dog.

I asked if he wanted to pet Jack, and he signed yes.  My girlfriend picked Jack up and held him, so that Middle could pet him.

He came over and touched Jack.  At first he was very hesitant, just barely making contact with Jack before pulling away.  After a few touches he was a little more confident.

It reminded me of the way Middle used to react to dogs when we would walk around the neighborhood before we got his service dog.  He was always interested in the dogs, but very hesitant.  When the opportunity presented, he would pet a dog that was securely held by its owner.  I think because he knew that the dog couldn't make any sudden moves, which scared him.

Thursday, November 22, 2012

Small Dog

Middle Son has a service dog named Willow.  Willow is a Great Pyrenees, so she is a BIG dog.  She was 93 pounds at her last visit to the vet.

Today we had our first ever Blended Holiday.  My girlfriend came over with her 17 year old daughter to have Thanksgiving dinner with me and my three boys.  They brought their dog along.  Their dog is a dachshund named Jack.  Jack is not a big dog.

Middle Son seemed interested in Jack.  He was looking at him and laughing.  But when Jack would go running past he would shy away.

During dinner, we put Jack in his crate in the living room.  When Middle was finished eating, he went over to the crate.  He squatted down in front of it looking at Jack.  He put his fingers inside the bars to pet Jack.  He jumped and giggled.

Running loose, the small dog was a little too unusual/unpredictable for Middle.  Once he was shut into his crate, he was safe to engage with.

Skating on the Leaves

Last night I took Middle Son and his service dog out for a walk.  There was a thick carpet of wet leaves and pine needles on the ground.  Middle was fascinated by them.  First he tried kicking them, but that didn't really work.  They were too wet.  Then he start scuffing his feet and sliding along over them.  It looked like he was ice-skating on the leaves.

Mornings and School

Yesterday, around 10:00 in morning, I got a call from Middle Son's school.  It was an automated call from the attendance office.  Middle Son had not arrived at school.  Since he was at MomC's that morning, I called her to find out what was going on.

She said that she had just dropped him off at school.  Then she started telling about the problems she is having getting him to do things.  He doesn't do what she tells him.  She can't get him to take a shower.  She can't get him dressed.  She can't get him out of bed in the morning.  She said she doesn't know what to do about it, and it is impacting Oldest Son--some days he ends up being late for school because she can't get Middle Son out of bed, and she can't leave him alone while she takes Oldest to school.  

She said that she is also starting to have trouble getting Youngest Son to do things.  She thinks it is because he sees that Middle doesn't listen to her, so he thinks he doesn't need to listen to her either.  Which seems entirely plausible.

I didn't know what to tell her.  I don't have those problems at my house.  Middle Son pretty much does what I tell him.  As much as a typical child would.  Youngest Son does what I tell him.  As much as you would expect any 4 year old to.

She said she thinks she needs a psychologist or autism specialist of some sort to come in and work with her on getting Middle to listen and do what she asks.  I couldn't think of any better ideas.

I think it is going to be a huge task.  She's abdicated the responsibility of making Middle listen to her for many years.  It's going to be very hard to get it back. 

Wednesday, November 21, 2012

More on Sundays

After a couple of email exchanges with Mother-of-my-Children (some of which were heated), I have a better idea of what Oldest Son was talking about regarding staying at my house on Sunday evenings.  I had been concerned that there might be something inappropriate with MomC pushing things on Oldest.  But now that I have the full story, I'm confident that there is not.

The crucial bit of information was that she suggested it because he told her he wanted to be able to spend more time with me.  Oldest told me that she had suggested it, but left out the context that he had been talking to her about spending more time with me.  It's fairly common for Oldest to leave out important information when he tells you something.

Last year was the first time he started having to do homework.  Previously we'd had his IEPs written in such a way that he was exempted from homework.  I would ask if he homework was done, and he'd say yes.  Then I'd find out later that his homework wasn't all getting done.  I eventually figured out that when he said his homework was done, what that really meant was he was done with all the homework where A) he knew exactly what tasks had been assigned, and B) he understood how to do the work.  If he was unclear exactly what the assignment was or he didn't know how to do the math problems, he didn't mention that.

I remember an article I read years ago about adults with Asperger's Syndrome and they trials they run into communicating with other people.  It talked about a young man who was having trouble finding a job.  His previous job had been cleaning rooms at a ski resort.  It was seasonal work--the job ended when ski season was over.  When he was interviewing, he told people that he had been "let go" from his previous job.  He didn't realize that this sounded like he had been fired.  He didn't understand that he needed to provide the context.

Which is exactly what Oldest did.  He told the factual truth, but without the crucial contextual details needed for me to understand what was really going on.

Tuesday, November 20, 2012

More Bus Trouble

Middle Son's bus arrived very early this morning, about 7:45 as opposed to the regular 8:00.  Middle wasn't dressed yet.  So I went out to tell the bus driver.  I said you're really early, and we're not ready yet.  He said no problem, we'll wait.

I went back inside, finished getting Middle dressed, got him his back pack and coat, and opened the front door.  The bus was gone.  I looked at the time, and it was 7:52.  So even though the driver was very early, he didn't wait until the normal pickup time.

So I drive Middle to school.  I went in and asked his teacher what is going on with transportation.  She said that the regular bus driver has been out for a couple of weeks, and that the bus arrived at school very early this morning.  I mentioned that the bus was very late to my house on Monday, and one day last week they didn't pick him up from my house at all.  She said she would email transportation, and suggested that I give them a call as well.

Sigh.  We had tremendous trouble with transportation last year.  I was hoping we wouldn't have to repeat it this year.

Monday, November 19, 2012

Sundays

I had an interesting, and slightly distressing, conversation tonight with Oldest Son.  He said that he was thinking that he might like to stay at my house on Sunday nights of the week that he is at my house.  Currently, all 3 boys go back to MomC's at 7 p.m. on Sundays of my weekend.

I told him that my girlfriend usually spends the night on the Sundays that he goes back to his mom's.  I said that I like having her spend the night, and that I wasn't sure if it would be ok for her to spend the night when he is here--that might be really uncomfortable for him.  So we'd have to figure that out.  I also told him that I would need to talk with MomC.  Changing the schedule is something that she and I have to discuss directly--not pass information back and forth through him.  He said that he thinks his mom doesn't agree with that; she thinks he should discuss it with me.  Not sure exactly what that means.  If it means she thinks he should bring up the question of schedule changes with me, that's ok.  If it means that she wants to negotiate with me through him, that is definitely not ok. 

Then he said that MomC had asked him if he wanted to do it, and that it was MomC's idea.  Or maybe it wasn't.  I couldn't get a clear read on it.  I told him that when I was growing up, sometimes my mom would tell people that I wanted something, when it wasn't really something I wanted, it was something that she wanted.  I said that I wasn't clear what he wanted to do, and that I thought it was important to understand what it was he wanted.  He said he wasn't sure.  I said that if he isn't sure what he wants, then we should wait to change things until he is sure.  He agreed.

A little later I went to his room to talk to him.  I told him that when I was in 10th grade, I had enough high school credits that I could have graduated in 3 years if we had arranged all my classes just right.  At orientation night, my mom had brought this up with the counselor.  He looked at me and asked why I wanted to graduate a year early.  And when he asked that, I suddenly realized that I had no desire to graduate early.  That was what my mom wanted.  I stammered and didn't say anything.  My mom came in with "I think he sees it as moving on to bigger and better things."  I remember later telling that to one of my teachers.  She said that if I didn't want to graduate a year early, then the counselors could make sure that didn't happen.

After I finished the story, I asked Oldest if he knew why I was telling him this story.

He said because he's getting old enough to have to figure out what he wants.

I said yes.  You have to start figuring out what you want and making decisions.  Sometimes people want you to do what is best for them rather than what is best for you.  You need to start learning to tell the difference between the two.

Late Bus

Got a message this afternoon from my nanny that Middle Son's bus was late.  Over 30 minutes late.  I called the school district transportation office and they said he would be home in about 5 minutes.

The nanny and I were discussing it when I got home.  She said that there has been a procession of new drivers the past few weeks.  She asked one of them if he was the new permanent driver and he said he didn't know.

I'm going to have to call transportation again.  I don't want a repeat of last year.

Friday, November 16, 2012

Sleep

Last night it took Middle Son a looooooong time to go to sleep.  I went to bed around 11:30.  I was awakened around 12:30 by Middle's service dog barking.  Middle continued to go to bed and get up for another hour.  Finally, at 1:45, I gave him another half dose of his sleep meds.  He slept from 2:00 to 6:30.

MomC was complaining early this week about him not sleeping.  No wonder.

Thursday, November 15, 2012

Missing Underwear

When I was getting Middle Son dressed for school this morning (he can do it himself, but it takes longer, he "forgets" to put on underwear, and half the time his clothes are inside out) I couldn't find any underwear for him.  So I had to send him to school without any underwear.  Which they have complained about in the past.

Disappearing underwear is a recurrent problem with both Middle and Youngest Sons.  They leave my house wearing underwear, but they sometimes return from MomC's house without it.

Youngest was at my house last night.  When I dropped him off at MomC's, I asked her if she had any underwear for Middle Son.  She brought out a stack of clear underwear.  She also gave me one of the reports from school, saying that Middle's underwear had been dirty on both sides.  Didn't check the date to see if it was from Tuesday or Wednesday.  Tuesday morning his underwear was dirty on one side because it was the only pair that I could find in the house.

It's frustrating that underwear goes to MomC's but doesn't always come back.

Wednesday, November 14, 2012

Continuing Adventures with Clothes

I got a text message from MomC about 7:30 this morning.  She said that she was not sure that she would be able to get Middle Son to put his pants on.  It wasn't clear what, if anything, she expected me to do.  It's not like I can put his pants on him via text message.  So I didn't do anything.  I went to work.  Later in the day I texted and asked if she got him off to school.  She said yes, but it took over an hour to get pants on him. 

It reminded me of calls I used to get from MomC when she couldn't get Oldest Son out of bed in the morning for school.  Only in that instance, I actually was able to get him to wake up and get out of bed over the phone.

Monday, November 12, 2012

Playing with the Dog

I heard Middle Son giggling in the living room.  I also heard Willow, his service dog, running back and forth.  So I went to investigate.

I found that Willow had dropped her kong on the couch next to Middle Son, and was jumping up and down, as if to coax him to throw it.  Middle Son looked interested, but didn't seem to grasp Willow's desire.  He was watching her and giggling, while still trying to keep his hands away from her.

I picked up the kong and handed it to him.  I pointed down the hall and told him to throw it.  He did.  Willow scrambled after it.  Middle Son laughed.  With prompting, he threw the toy for her half-dozen or so times.  That's the longest I've ever seen him play with her.  It was wonderful to see.

Guardian

I've been listening to Alanis Morisette's Guardian a lot lately.  I've blogged about the song before. Last night I realized why I am drawn to it.

The lyrics remind me of the person that I intend to be.

Sunday, November 11, 2012

New Toys

Youngest Son had a great time this weekend playing with his new toys that he got for his birthday.

He was building cages and caves for the dragon that I got him.  At one point he got upset that I had thrown out some packing paper because he needed it.  He was using it to make sure the dragon didn't breath fire on him.

He also wore the Go Diego backpack that MomC got him for most of the day.  He did take it off before going to be last night.

Agitation

Oldest Son seemed a little hyper this weekend.  There were a couple of conversations where he kept bobbing his head up and down and back and forth.  I'm a little concerned.  I sent him out for walks on Friday, Saturday, and Sunday.  It seemed to help, but he still seemed wound very tightly.

Peaceful Place

Last night, around 11:30, Youngest Son woke up.  I was sitting at the computer and he came and climbed into my lap.  He put his arms around me, snuggled in, and fell asleep.

Is there anything more peaceful than having your child asleep in your arms?

Saturday, November 10, 2012

Dog Treats

For the past few days Middle Son has been opening the cupboard where the dog food and other pet supplies are.  I wasn't sure why.  Then today I caught him eating dog treats.  Costco brand sweet potato and chicken treats.

When we first got Willow he used to go after her treats.  This is the first time in probably 10 months that I've seen him do it.

Email

Oldest Son's high school issued laptops to all students this year.  Oldest ran into problems today trying to use it to do his homework.  The file permissions have gotten screwed up, and he doesn't have the correct permissions to save to the hard drive.  So he can't do his homework (on the laptop). 

I proposed several options.

One of the things I suggested was that he email his teachers and let them know he was having problems and might not get his homework done.  This was HUGELY upsetting to him.  He had a hard time articulating why he was so opposed to this idea.  The clearest statement he was able to make about it was that he doesn't like communicating with people who aren't here. 

I can only recall one time that I had a similar reaction.  I remember my viola professor asking me to mark the dynamics on a piece of music by writing the volume numbers I'd use on my stereo.  I REALLY didn't like that idea, for reasons that I still can't quite understand, let alone articulate.

We did eventually come up with a solution.  He plugged a flash drive into the computer and was able to save files onto it.

Birthday

Youngest Son turned 5 today.  The party was at MomC's house.  I got him a Fisher-Price dragon.  When you squeeze a handle it flaps its wings and roars.

When he opened it, Youngest said to me "Daddy, did you think I would like this?"

I said yes, I did think you would like it.

He shouted back "OF COURSE I LIKE IT!"

MomC got him a Go Diego Go backpack.  He immediately put it on, and he hasn't taken it off since except to load/unload it, or to go to the bathroom.  I'd give 3:2 odds that he sleeps in it tonight.

Friday, November 9, 2012

Home

I noticed something today in the text messages that MomC sent me last weekend when she was bringing Middle Son over to my house.

She wrote
"I'm going to leave in a few minutes to bring [Middle Son] home."
It seems that she now thinks of my house as Middle Son's home.  That is a significant shift.  I wonder when it happened.

Is it really a surprise if you ask for it?

Youngest Son turns 5 this weekend.  According to MomC, he said he is having "a surprise cowboy party" for his birthday.  Which to me, begs the question--is it a surprise if you ask for it?

Thursday, November 8, 2012

Tickling

Middle Son loves to be tickled.  Even now, as his 12th birthday approaches, it's one of his favorite forms of play.  I know another father who's autistic teenager loved to be tickled.  While typically developing children outgrow wanting to be tickled, lower-functioning autistic children apparently do not.

He informs me that he wants to be tickled by leading me into his bedroom, lying down on the bed, and pulling up his shirt to expose his tummy.  Then he tries to grab my hands as I move in to tickle him.  He also tends to pull his feet up and block with his legs.  He's big enough now that I'm uncomfortable with that--if he inadvertently kicks me, he's strong enough to do some damage.  So last night, for the first time, I started telling him "feet down".  I use "hands down" in various circumstances, and I also say "feet down" when he is rocking his chair too hard at the dinner table.  (Actually, the dinner table chair is probably worthy of a post of it's own).

I wasn't sure if he would respond to it, but he did.  By the end of the evening he was mostly leaving his feet down when I tickled him.

Wednesday, November 7, 2012

Act

I saw I quote today from Michael Grunwald in Time magazine that I really like.
"do what you think is right while you’ve got the power to do it. When you finally get the keys to the government car, drive it."
It's something that I struggle with on a regular basis.  MomC and I used to skirmish a lot of what we should do about various problems that the boys have.  One of the things that I've enjoyed post divorce is realizing that I don't have to get her agreement.

Two summers ago I arranged for Middle Son to spend a week at Easter Seals Camp Stand By Me.  Shortly before he left for camp, MomC said she didn't think he'd be able to handle it and we shouldn't send him.  And I said I've paid for it, I think he should go, and if there are problems I'll take care of it.  We'll never find out what his is capable of if we don't push the envelop occasionally.  So he went.  By all indications he had a great time.  They sent back a CD of pictures and there were lots of pictures of him with a huge smile on his face.

Getting the service dog for him was another example.  We'd talked on and off for several years about getting a dog for him, and MomC had said that she'd work on it.  And nothing happened.  When Middle Son started climbing over the fence at her house and wandering the neighborhood, I decided to exercise my power.  Within 8 weeks, I had a contract signed and a dog in training.  We've had Willow for a year now, and Middle Son has stopped climbing over MomC's fence, even though Willow doesn't go to her house.

Tuesday, November 6, 2012

More on Sick Kids

The Mother-of-my-Children (a.k.a. the ex-wife, hereafter referred to as MomC) wanted me to take Middle Son tonight, because Youngest Son's birthday party is this weekend, and she's "got a lot of work to do to get the house ready for the party."  Apparently it will be too hard if Middle Son is at her house sick.  She also asked "what are we going to do if he's sick tomorrow?"  She wants me to take him.  The fact that I have to work at the job that supports the entire family (she still doesn't have a job) apparently didn't occur to her.

Sometimes I wonder what she thinks her responsibilities to Middle Son (and Oldest Son) are.  It often appears to me that she doesn't really think it's her job to deal with their problems--that's my job.  I don't get that sense with regards to Youngest.  The problems of Youngest are pretty minor compared to the challenges that arise with Oldest, and especially compared to Middle Son.  I don't know if that's all it is, or if there is more to it somehow.

Sick Kid

My ex is worried that Middle Son is sick and won't be able to go to school tomorrow.  It's always hard to figure out what to do if he is sick.  Or for that matter, how to tell if he is sick.

Friday, November 2, 2012

Homework

Oldest Son struggles with homework, especially with the mechanics of homework.  He has trouble keeping track of what the assignments are, when they are due, remembering to turn them in, etc.

He also tends to get frustrated pretty quickly.  He often ends up too agitated to keep going.  Last week when he was at my house, he seemed to be doing better.  This afternoon I got a text from my ex.  She said Oldest has back science homework he needs to catch up on this weekend.  She said she's not sure she can keep him on track and asked if he could come to my house to do his homework.

I said yes, bring him over on Sunday evening.  I'm not happy about loosing part of my free weekend because she can't get him to do his homework, but I want him to get the work done.  He needs to pass his science class.

Thursday, November 1, 2012

Waiting for Dinner

Tonight Middle Son was at my house and Oldest and Youngest were with their mother.  I got home a little late (we're at the Let's All Go Crazy Now stage of software development at work).  My nanny doesn't feed the kids until I get home.  She said Middle was clearly hungry, so she had put some food on his plate and told him he could eat.

And he didn't eat.  Even with the food sitting there in front of him, he still waited for me to get home before he started to eat.  Habits set deeply for him.

Watching

A friend of mine is currently going through the developmental evaluation process with his 2 year old.  He's concerned that his son has autism.  I was watching the expressions play across his face as he was telling me about it.  Brought back a lot of scary memories for me.  I hope that I will be able to offer him some help and reassurance as he goes through this process.

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."

Accommodations

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."

Hygiene

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

Clothes

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

Underwear

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.

Guardian

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.