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.
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.