Grasping at Dust

Ethan was very happy at church today, lots of smiles and giggles, which always makes me feel good.  He made a motion I didn't recognize over and over.  He'd reach out with his left hand and make a grabbing gesture with it, then bring it close and open his palm and look at it like he expected to find something.  There was bright sunshine coming into the row of pews ahead of us. I think he was looking at the motes of dust of visible in that ray of light and trying to grab one.

Taking Ethan to the Doctor

Something that happens occasionally when I take Ethan to appointments with the education, social service or medical systems is that they are really impressed by something I do that I don't think is all that impressive.  When I knew that valium was a benzodiazepine, one of his neurologists asked me if I was a medical professional.  I remember talking the on-call neuro resident at Children's Hospital who was really impressed when rattled of the names and dosages of Ethan meds and twice told her, no, Ethan doesn't that one anymore.  My reaction is always, well of course I know what his meds are.

Another neurologist said "wow, he's really compliant with you."  Again, my reaction was well of course he does what I tell him to do.  What else would he do?

Or the social worker with DVR (Division of Vocational Rehabilitation) who seemed almost shocked that I arrived at the appointment with all of the paperwork filled out.  I was a little shocked at the idea that everyone doesn't arrive with the paperwork filled out.

Or the school district sign language teacher being thrilled that I showed up for Ethan's sign language lesson's so that I could learn what he was learned.  That one didn't surprise me so much.  I know that I have an unusually flexible job. Lots of people can't leave work mid-morning for an hour every Wednesday like I did.

I am profoundly thankful that I was able to do all these things for my son.  I am also profoundly grateful that non-profit that runs Ethan's group home now does a lot of this and it doesn't all rest on my shoulders anymore.

Proud of the Man My Son Has Become

I was telling a friend recently about my son Ethan's annual assessment with DDD.  There was a representative from his group home who took part.  He described how mellow and easy going Ethan is, how he will eat whatever food is on his plate, how they love having him there.

I remember writing on my blog many years ago about the profound losses I felt after Ethan was diagnosed with autism.  Ethan is 25 and does not speak.  He is not fully toilet trained and needs help with most activities of daily life.  He'll never live on his own; he will always require supervision, especially with his seizure disorder.

One of the things that I said I had lost was getting to watch him grow up into the kind of man that I would be proud to have raised.  As I was talking with my friend, I remembered writing about that loss.  And discovered that Ethan has in fact grown up to be a man that I am proud to have raised.  I am proud that Ethan gets along well with his caregivers, that they enjoy having him around.  I think that Ethan enjoys being with them also.

There were a lot of things that I expected to get from moving Ethan into his group home.  The ability to go out for the evening if I wanted to.  Freedom from having to manage all his medical needs--the group home has a medical coordinator who makes all of Ethan's health care appointments, transports him to the appoint, takes care of all his medication refills, and after every appointment sends us a detailed summary of the visit.  Freedom from have to wipe his butt every day, and brush his teeth, and clip his fingernails, and on and on and on.  

I did not expect to that I would get to feel pride in who Ethan has grown to be.  But I did, and that is a precious gift. 

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.

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.