tulips and small steps`

Dramatic Julia at the Brooklyn Botanical Gardens Japanese Garden

I meant to write yesterday.  What happened?

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.  

I can imagine that conversation—the sigh, the dropped shoulders and then the in-breath and the resolve to continue in the world of full-time motherhood of that mom.  There was a point, somewhere around Julia in middle school, when I stopped saying that I had taken a few years off to full time mother and expected to return to work, and began to say that I was retired.  I was close to the right age and I had the benefit of social security for both Julia and myself so I could afford, if I was careful, to continue on in the full-time mothering capacity, but I too missed the interactions, the responsibilities, the working life.  Somewhere during that time the realization settled in that I was going to have to be on call for many more years and needed to be at home when she got home, making regular full-time work impossible.  I hadn’t yet conceived of it as the rest of my life, but recently, and after I read that blog post, I felt myself reconsidering.

Motherhood. It has been an incredibly important part of my life since Cheshire’s birth, but it never completely swallowed me up during Cheshire’s raising.  I was not a full-time mom for anymore time that was necessary and I had a partner.  It started all consuming and then tapered off, and although finding childcare or after school care or summer camps and activities could be challenging, it was all doable with enough money, enough organization and with a typical and amenable child growing. And a partner. Indeed, Cheshire thrived at the YCC’s theater camp for years and also going to a teacher’s house after school through middle school.

And I guess, that this is the operating system, that has been install and  in place since that time.  I am not sure why I’ve held onto it for so long, but I have. And yet, it hasn’t really worked for a long time—there has never been a time when I could just drop Julia off somewhere and not be available for contact or pick-up at a moment’s notice, but I realize now that deep inside I have been expecting that time to arrive.  

This mothering of Julia has become, has been a full time career-type job very necessary to her well being and growth.  And at least for today, I can update my internal operating system.  The conception of myself inside which I can’t even truly describe right now has not matched what anyone on the outside could see.  This has been true for a long time. I have spent 15 years mothering.

Well, duh.  I was also saying that I was shy for years and years after that descriptor was very much untrue.  That was when I was in my 20’s.  I chuckle that I can be the same now, 50 years later.  

It is the journey!  The journey that is the life.  Mothering a person with disabilities is a journey.  It is the life.  It is what unexpectedly became my life.  And for just a moment, right now, this early afternoon, I can see it as the Holland Story that I detested many years ago when I was first thrust into this particular career.  I do love tulips.

And on to Julia.

Julia had a pretty spectacular week—so many small steps that I may not remember them all.

First off, and what might be most important, Julia enjoyed her volunteer training at the library.  I’m not sure about exactly what she did, but the onboarding ended with her being assigned to straighten the books in the travel section.  She did it relatively independently and without much supervision.  The aide with her reported that Julia said under her breath, “I can do this work.”  And of course, she could!  I have had no doubts but she has never believed that.  Every new adventure was a source of so much anxiety that her reaction to the mere mention of “work” and “future” has always been rejection, refusal to listen or discuss and sometimes some talk of self harm and/or a meltdown. 

At the program, and also at home, we have stopped talking in terms of “work” or “jobs” or “employment” and instead describe activities.  And here, after all this careful talk and soft urging to get her to the library, she used the word herself!  She can do that work.  And a whole lot more!!

Another bit of work she did at the beginning of the week was an in-program job of checking many, many bags that someone has stuffed with treats and small toys for kids at a hospital.  It was reported that Julia worked at checking bags for more than an hour, independently after a training, without reminders, and was quite satisfied when she was finished.

And then, with her art mentor yesterday after program, Julia decided she wanted to start with water colors and not with collage making that Deb had laid out for us.  Julia said she would paint first and then make the collage.  I doubted that the collage would happen because transitioning during a lesson like this is very rare.  

So, Julia started out painting. At one point, Deb leaned over her and suggested that she wet the paper before she began putting on color.  Julia picked up the sponge and wet some of the paper.  So simple a move but amazing!  Julia rarely follows those kinds of directions.  And she just did it.

And after she painted for awhile, she said she was finished and wanted to start glueing for the collage.  And she did.  Again, no big deal, but I could hear trumpets.  

On the way home, she wanted to talk.  Even wanting to talk is a big deal for me—she usually wants to hang out on her phone, looking at endless pictures of cute Japanese boys.  Yesterday, she wanted to engage me.  

She asked about moving, as I expect she will for the next year until we finally do the moving.  She asked her usual questions about just what we will take.  When we moved from Madison, she spent many hours over the year asking about specific things—Will we take the bookcase?  Will we take my posters? Will we take what is in the china closet? Will we take our bathroom baskets?  It can be anything.

After a while, I move the conversation on to talk about the summer.  I want to go traveling for the two weeks after school lets out and before she begins Extended School Year.  I told her that I am thinking of visiting places where I know we are comfortable—Turin, Italy, and in and around London.  I used the word adventure and she picked up on it.

She asked if all adventures were “a little bit scary.”  What a great lead in for me!  Yes, adventures can be scary, are usually a little bit scary because we are going outside of our comfort zone.  Then, I asked her if our usual evening activities were adventurous—supper, cello practice, art making, folding clothes or emptying the dishwasher, taking out the garbage.  She told me that was boring.  Perfect!

I told her about how we had travelled to different places and how going outside of our comfortable place is scary but also exciting. For example, when we were in Australia, we got right up close to these miniature kangaroos and fed them the granola bars that were in my bag.  It was so very cool and she remembered it. I told her that sometimes I was scared during our adventures traveling—running for the last train of the day, driving on the “wrong” side of the road, climbing very small stairs to get to the balconies of churches.  I think she understood that some of these things were not scary in the least for her, but they were scary for me.

Then, she observed that working in the library was scary and kinda like an adventure.  Yes, yes, I said!  Whenever we do new things or go to new places, we can be scared but most of the time, we can do it and we have a good time. 

And then we were home.

And my mind was blown!  To understand that new experiences were scary, that traveling could be like working, that scary experiences were stressful, and that she could do it.  

Yesterday, Julia climbed a few steps that typical kids don’t even need to raise their feet for. How about that?

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