thoughts on the coming transitions

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.

On Facebook, my friends are posting news of their offspring—driving, working, planning for college, getting scholarships and awards, going to prom with handsome boys.  Sometimes I have to make myself write words of congratulations because I am sad and jealous.  I am indeed happy for all of these young people and their parents, but I wanted all those things, or some version of all those things for my girl.  Instead, I’ve spent this week gaining a better understanding of housing options and wait lists.  I’ve filled out a Section 8 application—wait list 10-12 years—and a CHAMP (Common Housing Application for Massachusetts Programs) application—wait list currently 5 years.  I am looking for more. I am not looking to push Julia out of our home but eventually she will want independence and it would be nice if the wait was shorter by that time.

I called to check on her application for adult services which has been in the works since a month after we moved here.  I called to see if her very specialized eye doctor recommends continued treatment after school is over. I called an attorney to see if the estate plan I set up in Wisconsin needs tweaking in Massachusetts. 

There is a smaller and smaller part of me that cries out, this was not what I wanted or planned for when I was filling out those adoption applications.  I wanted what I already knew.

Recently, I was messaging with an old adoption friend and as we related news about our girls I wrote that the path for young people on the spectrum is still a mystery that I am trying to wrap my head around.  There are others who have gone before us but it is like nothing what I have known.  I was reminded of Andrew Solomon’s book, Far from the Tree.  In our case, like those profiled in the book, the apple has indeed fallen far from the tree, possibly a few orchards away.  I struggle with Julia’s differences.  I have since her first diagnosis. I cannot predict in any way her future or insure a good life for her.  And I acknowledge that the same can be said for any typical kid — I think of one of David’s law school colleagues, a once-golden boy, who during a frat party slid down a slide, damaged his spine and was attending law school in a wheel chair with limitations on the use of his arms.  No way of predicting that one.  Lots of dreams changed in that family.

But autism is the earth quake that happens over and over again.  Um, maybe over and over again until there is full acceptance, until a parent is willing to give up on all expectations, all crazy dreams and hopes and fears and just see their child for who she is.  Every summer since I first met Julia when she was 5 and a half, I have made educational plans.  We learned to read together, do addition together, do word problems together, learned about the country we travelled to, about the art we were seeing, learned to use money, learned to use time.  Last year, floundering during quarantine, perhaps my plans touched on some reality.  We worked on laundry and gardening and cleaning the house and cooking.  I have spent 13 years making every task and every excursion a lesson in something that Julia needed to learn.  In the early years, my aim was to ‘catch up,’ to be ready for the next academic year or to fill in what was not learned during the last academic year.  Casting back, I think my acceptance of exactly who she is began when I asked her teacher and the school to allow her to repeat fourth grade.  The reason was not solely to allow her to re-learn and possibly understand the curriculum but also to stay with a teacher who had a profound instinct for inclusion and to hone some of her social skills. It was a good decision but I was still hoping to catch up.

I have always complained that there is no prognosis given out with the diagnosis of autism.  However, to be honest, people have said small things, dropped hints and more regarding the extent of Julia disability and limitations,  and I, fierce momma bear that I am, refused to live by those limitations.  I kept asserting, even if only to myself, that I would make her typical, or typical enough to fit into my conception of what her life would be.

Julia’s rough transition to Newton and then the complete shut down last March broke me.  Broke us to the extent that any shred of the original dreams still existed.  I had to let go.  It was painful and hard, I pushed against what I knew was true. I wanted to make war on all those things that fell outside of what I wanted.  In the end, with the dawning of last fall, I had to loosen my grip, open my hands and let go and begin to see Julia for who she is.  Julia as a complete and whole person.

People say we have a special relationship; people say that I’ve done a good job raising her; people say she is lucky to have me.  I think I have the demanding relationship that I need to have with her—a tough love of a special kind. I have done as good a job as I could with the knowledge I had at the time.  I have made mistakes, big ones at times.  The biggest was not following my gut and traveling for her ninth grade year.  It was too big a step for me and Trump’s election scared me—I knew they would let us out of the country but what if we had a hard time getting back in? But had we gone for a year, we would have moved sooner and the transition to a new place might not have been as awfully hard as it was for her.  Of course, then Julia would not have been a cheerleader and she loved cheering and her team.  

I don’t know if ultimately she was lucky with me.  I think a two parent family would have served her better than so many years with a single mom who was grieving.  I think she would have really benefited having siblings closer to her age.  I thing a family who was engaged in sports and physical activity, not reading and writing, might have nurtured more of her. I think, however, that we have changed each other, and grown our family in ways we would not have had we not known each other.  I don’t know whether those things can be called  good or not good, wise or foolish. Julia has made me stronger and louder and more passionate.  I have managed not to damage her very willful spirit. And though I can write all my regrets and qualms and uncertainties, worries and fears, she and I are bound together in a deep and final way.  

I have spent so much time turning away from ambiguity, searching for some sure answer, a straight and narrow path when crooked paths have always been my nature.  In a New York City map of a life, I’ve traveled Broadway, the old road that has never been coaxed to fit into the grid.  From time to time, I have managed to make it look like I fit into the straight and narrow.  Maybe I only convinced myself that I could pass, maybe no one but me believed it.  Julia busted that myth wide open.  I didn’t see that for a long time, for years.  It is so clear right now, as clear as the power of Dorothy’s red slippers.

With Julia there have always been small victories, accomplishments parents of typicals take for granted. I know I did.  Julia does her chores pretty willingly most of the time: taking out garbage, compost and recycling from house to cans, she takes the cans out to the curb on Thursday nights and bring them in after school on Friday.  She can almost do laundry by herself and folds and puts away clean clothes pretty well. She has been taking the bus to and from school since spring break and is happy about it.  She always closes the van door and even manages a greeting and a thank you most of the time.  She waves to me sometimes from the van as it departs. Julia has been spending some time water coloring and has posted by herself on her blog.  She has not complained for awhile now about not being on interactive social media or losing her iPad privileges.  She does spend too much time on her phone, although to put a bright spin on that, she reads a lot of manga on her phone.  I probably would not find most of it interesting but it is not too inappropriate. She goes to two zoom meetings a week with the transition program she will go to in the fall.  The meetings are an hour before school begins and she is ready and willing to zoom in most of the time.  She is finally making a bit of progress with zoom cello lessons—this was a tough one and we have her teacher to thank.  She is participating more during the zoom theater workshop she does twice a week—again, a big step forward.  Slowly and with a lot of help, she is gaining back some of the social skill losses of the last year.  She is greetings teachers and administrators at school, and some students as well.  I spoke to the Head of her Class House today, and the woman remarked that she had spoken with Julia about the prom and how excited she was for it.  Calls from her inclusion facilitator or counselor about dangerous or frightening behavior have diminished.  She still escalates sometimes due to frustration but her behavior is not as intense as it was and she de-esculates quicker. And finally, we are working on, albeit not without pushback, having Julia be completely independent during her morning routine.  Three times last week and twice this week, she got up, showered, dressed, brushed and made her bed without my reminders.  

These are all solid and happy accomplishments in our continuing family life. 

And I am no longer living in survival mode. I have had time and room on my plate to consider, to think, to read and write and to dream. Yesterday’s announcement that the vaccinated among us no longer need wear masks was both a surprise and a lift.  We have another week before Julia’s 2-week post second injection time is over, and so, we will wear the masks for at least another week.  Then, perhaps I will put a toe into the water of what used to be normal, perhaps I will even begin to make a few plans.

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