Almost Done

Last week my girlfriend (henceforth referred to as MGF) and I went to Middle Son's school and met with his teacher and para for a bit over an hour.  We set the meeting up because next week will be Middle's last ever week of school.  He aged out last year, then we got pandemic recovery time for him which got him another semester this year.  And that semester ends on February 2nd.

I felt very distressed during and after the meeting.  I choked up a multiple times.  For most kids the end of high school is a chance to move on to bigger and better things, more autonomy over their lives, acquiring new skills in the workplace or in higher education.  Their world expands.

I think, I fear, that Middle's world is going to contract.  For nineteen years he's gone to school.  A place where he was cared for.  A place where he had the opportunity to interact with other people, a place where he got to experience more of the world than my house and his mom's.  And next week, that will be gone.

We've been preparing for this.  MGF has plans to take him to the Senior Center for lunch on a regular basis.  They both like movies, so we've bought them movie passes so they can go see every movie that looks interesting.  His mom has been looking into classes at the Alyssa Burnett Center, which has programs for adults with autism.  But it's going to be tough to replace the 25+ hours a week he goes to school.

I worry about how taking care of him is going to impact us.  MGF says that she feels called to do the work of caring for him.  She will be taking on the lion's share the additional caregiving duty.   I worry about how it will effect her.  I worry about how it will effect our relationship. She suffers from chronic fatigue and sometimes struggles to keep up with the smaller caregiving role that she is already doing.  I won't be able to shoulder much of the additional load. The time that he used to go to school is during the hours that I have to work.  If I can't work all the balls I have in the air will come crashing down around me, so I have to do that.

We talked with them about some areas where they have seen Middle regressing in the past couple of months.  They think it started around the time that he had a bad seizure at school.  They said that he doesn't understand things that he used to understand and he gets confused and agitated more often.  I'm wondering if that seizure was bad enough to have caused some brain damage.  That's a hard thought.  Especially since I had missed some of his meds the day before he had that seizure.  It's hard enough thinking that he may have had a permanent loss of ability, but when I wonder if I could have prevented it by giving him his meds, that's really hard.

I teared up.  When his teacher asked me what the emotion was about, I said that I was projecting forward.  She said that she thinks Middle has strengths that would enable him to be successful in a group home.  He's generally happy.  When he understands what is being asked of him he is generally compliant.

That reminded me of a conversation I had with my therapist last week.  I've talked with her about my long-term concerns for Middle.  At some point MGF and I won't be able to take care of him and when I've tried to get in touch with groups homes to talk about a placement for Middle, not only do they not return my calls, they don't even answer their phones.  My therapist  told me she had spoken with a couple of colleagues who were very knowledgeable about the adult autism space.  She said the first question that both of them asked was if I was willing to relocate.  Apparently Washington State now ranks 47th out of the 50 states in per-capita funding for services related to developmental disabilities.  The last time I heard the number if was 45th, but that was over a decade ago.  Sad to see that we've fallen even further behind.

As we were getting ready to leave his teacher said again how happy she was that we were thinking about a routine for Middle and how to make the transition from school to not-school easier for him.  She said most parents don't do that.  I choked up again and said that makes me so sad to hear.

There are times when I feel like I'm letting Middle down with decisions that I made, like when I agreed with his mom to move him out of the Riverview School District (where I live) into the Lake Washington School District (where she lives).  LWSD's transition program was very focused on work.  Getting kids ready for jobs and finding internships and jobs in the community that they could do.  When the pandemic hit they couldn't do any of their normal activities because no one was taking on interns.  Even when school started back up, no one was accepting their kids as interns.  I moved him back to Riverview.  RSD's program was focused on building basic life skills, things like being able to get his own snacks, comb his hair, and run the vacuum cleaner.  I never saw results of what he was learning in Lake Washington.  It's been clear to me what he's learned in Riverview.  I wish now that I had not moved him out of Riverview.

Then I think about all the times when people have been so excited and impressed at my awareness of and participation in Middle's life.  Like the nurse who was so impressed that I knew not only what meds he takes, but the times and the dosages, as well as how to call the on-call resident if we needed after hours help.  Or how excited the sign language teacher was that I came to the school on Tuesday mornings when she was there so that I could learn along with Middle.  How grateful his teacher in 3rd grade was when I came in with a lunch of peanut butter and fresh fruit rather than the processed food that his mother was sending.  A special ed teacher I dated for a while who told me that most parents of her students barely engaged with the school at all.  My friend from the Father's Network who told our support group "I noticed that Pete actually talks to his kids.  I decided I'd try that, and it worked great!"  How my church choir director makes she that she has an ice cream bar for Middle at every rehearsal.

When I think about those things, I'm astounded.  When Middle was diagnosed, I would not have thought I was capable of doing all the things that I've done for him.  I've taught Middle how to see and been seen by other people.  How to listen and hear what people say.  How to engage with the people in his life.  I remember going to a lecture or maybe reading something about parents of kids with disabilities.  It said that some parents shy away from the disability.  Others embrace it and grow.  I grew.

Youngest and School

The Mother of My Children (MomC) and I met with Youngest Son and his teachers on Tuesday of last week to talk about how he is doing in school.  He goes to a choice school where students are in-person two days a week and expected to do the rest of the work from home, it's a very small program.  His math/science teacher said Youngest is doing well and passing algebra and chemistry with no major issues.

His humanities teacher was less positive.  Youngest missed a quite a few of days of school this semester to illness.  She said that given how much time he missed, she is comfortable giving him a "Pass" grade in English and History, meaning he did ok under the circumstances.  The she said if we don't see improvements, she won't be able to give him a Pass next quarter.  He doesn't turn in a much homework, and what he does turn in isn't up to standards.  He will right one bullet point where there should be four, or a single sentence where there should be a paragraph.

We talked briefly about his current work.  He complained that book they are reading for English is boring.  She replied that she would love to get an essay about why he doesn't like the book.  We talked about what his current assignments and what needs to be turned in soon.  There was a significant history assignment, and he would be writing an essay on the book he doesn't like.  

While talking with My Girlfriend (MGF) about the day, I came to the conclusion that the only way Youngest is likely to pull it together for school is if I take action.  MomC complains to me on a regular basis about how hard it is do get him to do anything at her house.  He doesn't want to do homework, he won't get out of bed for school, he doesn't help around the house, he spends all his time sitting in front of his computer.  The only non-computer activity he seems really interested in is playing with his dog.  

I have a really hard time with this.  He does what I ask him to.  I can get him out of bed over the phone.  At my house he will start the dishwasher after dinner without being asked.  I have difficulty making sense out of how he does things easily for me that he won't do at all for her.

That night I called Youngest and asked him what homework he was going to do tomorrow.  He said he could work finishing the novel they were reading.  He couldn't start on the essay yet because the teacher was going to give him the writing prompt for that on Friday.  I asked what time I should call and see how he was doing and he said 2:00.  He hadn't read much at 2:00 but said he could finish it today.  So we agreed that I would call him between 7 and 8 to see how he was doing.  When I talked to him at 7:15, he said he was done.  I said great.  What are you working on tomorrow and when should I call.  He said History, call at 2.

When I called him the next day he hadn't started yet at 2.  I asked what time I should call to check on his progress.  I ended up calling him four times that day.  He only managed to get a small amount of homework done.  I started thinking that the only way he's going to get homework done is if I'm keeping him on track.  I told his mom that I was thinking of coming over to her house in the evenings to sit with him and make sure he does his homework, and asked her what she thought of that idea.  She said she was ok with it.

Then I had a very interesting conversation with MGF about it.  I told her that I was thinking of doing this.  She said that if Youngest's real motivation (or part of his real motivation) was to get my attention, then I'd be giving him exactly what he wants without him having to do anything different.  She also pointed out that this would give MomC a pass. I wouldn't be asking her to do anything, and as primary custodial parent she was the one who ought to be handling this, not me.  All the inconvenience would be on me and MGF.  Thinking about that, I remembered the experience of trying to get him to do homework during the early days of the pandemic. I'd often spend a hour with him and to get one math problem done. 

I didn't want to do that again, so I proposed that Youngest come over to my house on Sunday.  He and I both like role-playing games, and I had a new one I wanted to try out.  We could spend some time on that, and some time on homework.  So we did that.  We spent some time with the game, then we alternated between game and homework.  He helped me make dinner without objection or complaint.  By the time I took him home he'd spent about 1 1/2 hours on homework and had finished his big history assignment.

I was talking with my therapist the next day about all this.  I told her that I don't understand why MomC can't get him to do things.  She said she doesn't do a lot of parent coaching because, like me, she has a hard time understanding how parents are unable to get their kids to do things.  She said that being unable to motivate your kids is a widespread problem, and in her observation, most of the parents who can't get their kids to do things don't have a strong connection to their children.  

She said that I obviously have a very strong connection with Middle, and with his brothers too because I am able to get them to do things.  She asked if I thought MomC had a real connection to Youngest.  I pondered that for a bit.  In the first couple of years post-divorce, I used to hang out with one of MomC's close friends.  She had a son who was very similar to Oldest and they got along well.  I remember her telling me that she saw lots of stuff about Youngest on Facebook, but very little about Middle and Oldest Sons.

As an upper-middle class stay at home mom, MomC had two paths to "success."  One was her big beautiful house, and the other was her high-achieving children.  The costs of autism therapy for Middle and Oldest meant that we didn't have a big beautiful house.  Oldest was clearly bright in some areas, but was not on track to be a high achiever.  I remember thinking that MomC probably saw Youngest as her best chance for success.  I had assumed that she had an effective connection with him, but looking at the evidence, I didn't really see one.  That was a hard moment.  I had accepted long ago that her connection to Middle was never going to be as strong as mine, but I hadn't really thought about her connection, or lack thereof, with Oldest and Youngest.  It saddens me to think that they don't have a good connection to her either.

Youngest and School

 We switched Youngest Son to a different school when the new semester started.

It has been a positive switch.  The new school has in person classes two days a week, and then home work for the rest of the week.  Youngest has been going to school.  Sometimes someone has to come out to the parking lot to get him.  Sometimes he makes it into the school but not all the way into the classroom.  But he is going to school.  Even better, he is now passing all his classes with at least a C!

I had some hesitations around this school.  Especially given his attendance issues.  MomC has done a good job of lining up tutors for him, tracking that he gets his work done, etc.  It's a huge relief.

One really interesting thing I noticed in the last meeting was that all the school staff were asking if Youngest if they were supporting him well enough.  Youngest looked a little unsure about that question.  I chimed in and asked him if they were making it easier for him to go to school.  He said yes, they are.  That was good to hear.

School Meeting

MomC and I had a meeting today with Youngest Son's school about his lack of attendance.  I unfortunately was not able to make the call.  I had a Dr's appointment that was supposed to start at 9:30 but didn't actually start until 9:55, and the call was at 10.

Apparently we are getting close to the point where Youngest is consider truant, which means the school will have to start filing paperwork with the court.  We really don't want to get entangled with the courts. If Youngest doesn't start coming to school by early January they have to file the papers.  They said that just getting him into the building would count.  If he comes and sits in the counselor's office and reads or does homework that would be fine.

Youngest has said to his mom and his therapist that he has a hard time coping with all the people.  Which seems like it could be true.  Both his brothers have autism and have sensory issues, so he might too, and he has ADHD.  They talked about a specific program, I can't remember the name of it now, that has smaller classes.  He may or may not be able to get into it.

I talked a little more with MomC about writing up a contract with Youngest, that he will have 2-3 months to improve to the point where he is going to school every day and passing his classes.  Otherwise he will have to come and live with me.

I hope it doesn't come to that.

Schools Again

 I had two noteworthy conversations about school yesterday.  One was with Oldest Son.  He has decided to sign up for a coding boot camp.  If he makes it through, he would likely be able to find a job where he could afford to move out of MomC's house.  That would good, and probably make everyone happier.

The second conversation was less positive.  Youngest hasn't been going to school.  MomC says "I just can't get him to get out of bed and go to school."  Which blows my mind.  I have a really hard time comprehending how she can't get him to do this.  As a general statement, he does what I tell him to do without fighting about it.

She called me to talk about it and see if I had ideas.  She also wanted to talk about what we're going to say when we meet with his school counselor later this week.  He's racked up a huge number of absences and tardies now and the school wants to talk about it.

I told her I didn't have any magic tricks.  I tell him to get up and he gets up.  Sometimes I tickle him a little.  She said she'd tried that, but it doesn't work.  Then I brought up the idea of him coming to live with me.  She's not reacted well to that suggestion in the past.  

This time was different.  She said that then he'd have to change schools.  Which is true.  We live in different school districts.  She said she wasn't sure about the middle school in my district.  My school district doesn't have as much money as hers does, and she's kind of a snob about it.  My response was that a school he actually goes to will be better than a school he doesn't go to.  She said she wasn't sure about that, which boggled my mind.

Then she said something really interesting.  "Then I could sell my house."  She is currently unemployed but has a huge amount of equity built up in her house.  She could live for years off the profit from the house and take a low stress, low pay job.

Which would mean youngest would be coming to life with me indefinitely.  I have mixed feelings about it.  I think he'd be better off living with me.  I'm less sure that I'd be better off with him living with me.  Taking care of Middle Son, I skate pretty close to the edge of what I can cope with.  I have a complicated emotional response to that.  Part of me feels guilty/insecure/insufficient.  Then I remember what Middle's Dr. said to me the last time I took him in--"if it seems hard, that's because it is hard."

New School

I'm back again, and planning to make it a more regular occurrence. 

This week I moved Middle Son back to the school district that I live in.  After Second Wife and I got divorced, I let MomC (Mother of my Children) talk me into moving him into the school district where she lived.  Her district has more money and resources.  She, like most people, assumed that that meant it would be a better program for Middle.  I was skeptical.  Second Wife had blown my mind by pointing out  that Middle's ability to consume educational resources is limited, and Middle's ABA therapist had said she thought Middle should go to school in the community where he was going to live after he got out of school, which is with me.  But having just gone through a divorce, I didn't have the energy to argue with her about it, and the logic that a district with more money is a "better" district had it's impact on me too.

Yesterday, the first morning, I walked Middle onto the bus.  The driver told him to sit in seat 7.  I told her that Middle doesn't know his numbers and helped him find the correct seat.  He had a little trouble with the seatbelt, so I helped him with that as well.

When he got back the first thing he did, even before taking off his coat, was sit down at the dinner table.  I opened his backpack and found that he hadn't eaten any of his lunch, so I got him food.  He ate a lot.

Today I stood on the porch while he got on the bus.  After school he still went to the table, but he didn't seem as hungry.  When I checked his lunch he had eaten most of it.

One of the interesting things they do is weekly shopping trips.  They cook breakfast and lunch in the classroom every day, and each kid is responsible for coming up with their menu plan, food budget, and shopping list.  They go shopping on the first Monday of the month.  I think this is a pretty cool thing, and am eager to see how Middle does with it.  Given his very limited communication, they asked me to send them a list of foods for breakfast, lunch, and snack.  It will be interesting to hear about they make a list with Middle and how the first shopping trip goes.  I told them that Middle expects to get a donut every time he goes to the store, so they are going to plan for that.

Go with Mom

Today MomC and I took Middle Son to an appointment at the Department of Vocational Rehabilitation.  His School-to-Work transition program is partially funding by DVR and they needed us to come in and take care of some paperwork.

I had brought in the paperwork that we got in advance.  The case walker thanked me more than once for being so thorough when I filled it out.  It brought that feeling I get when Dr.'s are impressed that I know the names, dosages, and timings of all the medications that Middle takes.  It seems like that should be normal, not impressive.

MomC brought him to the appointment.  Was at her house last night and today because they are on mid-winter break (she's at teacher).  When we left, Middle started walking to my car.  His mom told him to come with her and he kept going towards my car.  I had to tell him three times and then finally give him a little push to get him to go with her.

I always feel bad for both of them when that happens.  But especially for her.  When Youngest Son wants to stay at MomC's house instead of coming to mine, there is an obvious explanation.  He wants to go hang out with his friends, or stay home and play with his dog.  He absolutely loves dogs, has since he was a toddler.

But Middle doesn't want to do that.  He mostly stays in his room and watches TV at my house and at hers.  The explanation that comes to mind, is that he likes being with me better than her.  Now that I think about it though, there is another possible explanation.  He doesn't want to be with his younger brother, who is usually at his mom's house.

I'm glad I thought of that.  It makes me feel a little better.