I went up to Cheshire and Justin’s house on Wednesday with the promise of holding Wilbur for an hour or two. Two weeks old and not spending too much time with eyes open. He had a doctor’s appointment earlier in the day and it tired him out. He nestled in my arms, moving his extremities the way a new baby does—random and without purpose. Amazing how dear such movements can be. And I cannot help but remember when his mother was that age and we brought her home to First Avenue in the East Village.
All is well at Wilbur’s house. Baby sleeping in adequate chunks of time; his bodily functions all working at full tilt. When else is farting charming? He has a good suck, fills his diaper regularly and cries in protest every time his little body is without clothes. Mama and Papa are content, and not as exhausted as I remember being.
We had Julia’s last IEP meeting yesterday. She will leave the school system in January when she turns 22. The participants included transition specialists from DDS and MRC, both agencies will loom large in Julia’s future. Her inclusion facilitator conducted the meeting. Two aides, the speech therapist, Julia’s out of school therapist were also there.
Julia presented a power point about where she is and where she wants to go. She has done this for a few years and this one was the best. She likes working at the library, she wants to work more, she wants to live with room mates, she wants to take care of her nephew who is not yet born. She has gotten better at cooking and she is interested in making money. I am leaving a few things out that I’ve forgotten. Each slide was pretty appropriately illustrated with anime pictures that she copied.
10:00 a.am. I get a email from Julia’s inclusion facilitator that Julia is upset that she left her wallet at home. I am more or less ready to do some errands, so I jump in the car and bring the wallet over to the program. I want Julia to have as good a day as she can. She has had some very good days this week . . . talk about that later.
I read a blog post (and I can’t find it now to link it) about a mom who has a child with autism who had reached middle or high school and was more independent than he had been a few years prior. The mother felt some room open up, some possibility of freedom for herself, and asked a trusted therapist if she thought that the mom could enter the regular work force again. She had cobbled together part-time work through the years but missed a full-time job and building a career. The therapist, who knew her kiddo, told the mom that if she “needed” to work, she should, but that kids with the best outcomes have full-time moms.
The bus didn’t come for Julia yesterday and I drove her to school. When I came back into the house, I breathed in the aromas of our morning—coffee, sweet tea, bananas and chocolate chip waffles with maple syrup. Could I delineate each flavor note? Probably not but smelling one, I imagined all the others. The aroma was that of our mornings. And there was such a peace in that. Our home takes on that aroma most mornings, I suppose. It is warm and welcoming. It is a good home smell, the scent of security, from which to leave to begin a day. Such a relief. It did not have to be like that. Even now. And I appreciate the work that I’ve done to make it so. It has been a long haul.
Winter break has been over for three day. I mean, this is the third day, and I have this overwhelming feeling of wanting to be alone and quiet. This morning after Julia boarded the school van, I took a deep breath and bathed in the house silence. I did not want to say a single word to anyone, and the usual morning pleasantries to the van driver (who is a very sweet man, by the way) were an incredible effort. Peculiar thing is that Julia has had three very easy mornings following a relatively calm and easy winter break.
The only challenge of the break, and indeed of the coming month (or so), is that she could not do her regular activities. There was no rowing last week and her zoom theater workshop was on break. The rowing class has now been cancelled for at least a week with the possibility of an extension. Oh, how that email read like the first school closings in 2020! The theater workshop which was rumored to go back to live meetings will stay on zoom, starting in February. Both these activities are important to our week, to her sanity. I hate to lose them for any time at all. She will still have meetings with her therapist and her art mentor. And for these, I am so grateful
First day of Julia’s transition program at Community Connections designed to teach her independent living and employment skills. They have a huge hill to climb.
Anxieties of the morning: The van didn’t come (It showed up at 9:15, a half hour late) and it was less stressful for me to drive her than for her to wait for transportation. She brought drawing materials with her to the program and I encouraged her to use them if she has time. Julia has a brand new rash on one arm (although it might be moving to both arms). I don’t know what it is. There is Sarna in the front of her backpack which works to calm the itch much of the time. She also brought her phone which has proven to be disastrous at times but it wasn’t worth a morning tussle.
Facebook memories pop up: 3 years ago today, we were at Coogee Beach in Australia; 4 years ago we were cruising in Alaska; 5 years ago we were in the lovely town of Orta San Giulio in Italy and 6 years ago, we were with Julia’s China Sisters in Ohio. We are going to Ohio tomorrow and I hope for some fun. But today I gather my thoughts to write where Julia is these days and ask for help.
This morning I arrived at sudden clarity after months of confusion and muddle, and maybe a little hope that some of my greatest concerns could work themselves out. Nothing has worked out “by itself.” There are no answers this morning, but I can see where we are with Julia’s life, the little that is going well and all the rest.
This was excruciating to write; however, necessary. The four weeks of ESY (Extended School Year) have not gone well. Every week Julia has had some days of refusing to do the work of the day, threatening self-harm at school and having rough mornings or evenings at home. Nothing I have done at home in previous years is working. Before the school year and the new transition program begins, I need to work out some things that help Julia. She is NOT going to blend in and get adjusted by herself. She is NOT going to transition without effort. She is still on high alert and on the brink of meltdown every day. She is as hypervigilent and affected by trauma as she was 12 years ago.
Julia put on a red plaid skirt, a green plaid shirt and a tiny white shrug today, together with some anime character knee socks and her white sneakers. The sneakers a concession because she has track after school. When I saw the clothes heaped in a pile on the bathroom floor, ready for after shower dressing, I made my sour lemon face which Julia did not see—those clothes do not go together. And admittedly, if I tried to put them together . . . but then again, I would have never attempted to put two plaids together let alone a dark red and a light green. Julia put them on and they looked okay, interesting even, somehow not outlandish at all.
Julia has her own style. Always. And she is on her own learning curve. I have said these things, thought these things for a long time. The mantra has seeped into my soul and I am beginning to believe it.
Julia will be walking in the high school commencement ceremony in a few weeks. She will not get a regular diploma—something that was hard to give up on when she was in 9th grade and something that I am so grateful that I did not hold onto. I think she might have been coaxed and prodded through the requirements and MCATS at Newton North, but not during these crazy two years, not during her rough transition from Madison in the months before shut down.
“March went out like a lion Awakin’ up the water in the bay . . . “ ~Carousel, Rodgers and Hammerstein, “June is Busting Out All Over”
Funny, I remember this line and sing it in my head as “March came in like a lion” every year this time of year. So, according to my lyrics, March came in as described. We have had warm hatless days and the snow is disappearing—we are not in Wisconsin anymore! When there is sunshine, the sky is a shade deeper than pale blue and we are searching for the first signs of spring breaking through the earth. I have to go on neighborhood walks to find those signs of spring instead of my own garden. Still missing my own little plot. I need to ask my landlords if I can use their side garden for vegetables and a few annuals again. I have another month or so to ask.
The lay of the land, so to speak, has been more interesting in the last few weeks than in many months, although there have been bumps.
Some days are a writing prompt waiting for me. Notions and ideas come from everywhere inside and out and I get lost in the riches of too much. Other days, I get nothing. And then there are days, when a host of mundane tasks call out to be done immediately, and I am sure I should sit and tap on the keyboard. When the chore is getting Julia to school or a scheduled zoom for either of us, I give in, do it, but then there are days like today.
Showered, breakfasted, clothes from last night’s late wash in the dryer. Kitchen should get cleaned up to bake Julia’s birthday cake, a run to get the saki to accompany the take out ramen she wants for dinner, a vacuum of the living room that smells like smoke because the wind came down the chimney last night and the supervising that will get Julia’s art homework started. None of it taking too long but I know those kinds of tasks——They eat up your my soul. They take longer than I suppose and tiny add-on tasks pop up along the way. I’ll steam along until either it is time to pick up the supper take out or I need a nap.