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.
No comments:
Post a Comment