Monday, December 31, 2012


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


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


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


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


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.


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.


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


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


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


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


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.