Just a few things up front:
Being alone with Julia for a holiday can be somewhat lonely for me.
There are few lovely moments to lean into during the irregularity of a tradition-less holiday.
When joy is elusive, self-pity sneaks in steals all the cookies and leaves crumbs in bed.
Totally unfair is a science project that is due next week—in a moment of pique, I cursed the offending teacher with Christmas day essay grading with only non-alcoholic eggnog to drink. Continue reading
Weekend: Days 4 and 5 Concerta free. On Saturday, Julia took a 3 hour nap in the afternoon. I woke her for supper. She ate, did some homework, read a bit, watched half of Death of a Salesman on YouTube, watched a bit of Great British Bakeoff and then asked to go to sleep. She was snoring by 9. She didn’t have a nap on Sunday but again she was in bed and asleep by 9.
She is eating. Like a Hobbit, we say — second breakfast, elevenses, luncheon, afternoon tea, dinner, and supper. She was ready for them all. She went through a week’s worth of fruit in 2.5 days and yesterday, she ate the crust on a piece of pizza and said she loved bread. She never eats crusts and has never loved bread. Is it hunger, a desire for the physical act of eating and/or taste?
Last week, I asked one of Julia’s art teachers for an update on how she was doing in class. Learning Adobe Illustrator is not second nature to Julia (or me, I might add). The answer was that she is doing okay but not getting any of the larger art concepts. Oh, how I wish she was. But I am not surprised. That is Julia in all her classes. She doesn’t take history because she is awful at time and although she is okay at memorizing dates, people and the causes of any war, she doesn’t get any bigger pictures.
But I’ve held onto much more hope for art. She has probably drawn more pictures and made more clay figures than any ten kids put together. That counts for something, right? Continue reading
Julia survived cheer camp. So did I.
From what I heard from the coach and what I gathered from Julia, she did not participate much on Saturday. She was content to sit on the side and watch. I have seen her do that before and if such behavior helps her integrate into a new situation, it is a good way to find herself. It must have been pretty overwhelming with cheer teams from all over doing all those cheery-type things very loudly. An unfortunate side note, Julia had her phone with her and she spent a lot of the day texting with girls back in Madison. On one hand, it was good practice, but on the other, I’ve seen this behavior consume all her attention and make her unavailable to do much else. The next day, Sunday, Julia did participate and she said she had a good time. I don’t think she performed with her team at the end of the camp but she enjoyed what she did. Continue reading
On the train from Umina Beach to Sidney Central and then Randwick, traveling from a quite northern suburb of Sydney to the center. There is a lot of water to see, quiet water and surf beaches. I am enjoying the water. Marianne took us up Mount Ettalong to view the beaches that flank it—Pearl Beach and Umina Beach. Later, we walked one of the beaches. So much of what we will see in the next weeks hugs the coast! I need time to just sit and stare at waves. Continue reading
I notice rain. Just after dawn, coming down in buckets, like cats and dogs, teaming. Or is it teeming? It thundered and lightened and made an awful fuss before coming down. This rain has been in the offing for 24 hours, announcing itself over and over again with two brief showers yesterday, neither long enough to be “rain” and mounting humidity until I turned on the air in the late afternoon. We’ve slept in the cool, manufactured air for which I am grateful. Continue reading
We are sinking into home. Beds. Couch. Kitchen sink. Julia’s cello. Machines. My first batch of tomatoes from the Farmers’ Market being sauced as well as a small pot of tomatillo sauce. To be ultimately frozen for winter dishes. I have missed the wonderfully large bunches of basil at the market. I have none growing. Me thinks no pesto this year. Continue reading
Yesterday was a day of issues and challenges. Two to be precise. Two challenges that I had no idea I was going to come home to. Both require lots of energy and some decisionmaking. After 24 hours of fretting and feeling sorry for myself, for us, it was time for action. Action, in some cases, is a number of phone calls, messages left and then patient waiting. So a measure of frustration gets added to the mix, but I posted on Facebook and also on my neighborhood listserv about the appropriate issues and the response from neighbors and friends has been so supportive. And I really needed that. A hazard of living alone, no one to vent to or commiserate with. Online friends are not the answer to all the hard situations of the world but it felt good to keep one eye on Facebook responses as I started cutting down my beloved garden.
On the deck, waiting for the school bus. Julia has taken it home two days this week and it has been ok. So, yes, I have seen at least one kid move away from her when she gets on — we are not going to change the world. We, she and I, keep talking and she has a few allys to stand up for her.
For the first time ever, Julia has a great many feelings about school ending. AND school closes in two weeks. She walked around the school the other day taking pictures with her iPad and then told me about them when she got home. She has been crabby and grumpy. She is telling me that she is excited about middle school but also that she will miss people. Julia is inhabiting so much more of her world than she did a few years ago, so much more than last year. (A side note: When Julia’s special ed teacher ask her about being crabby, Julia told her that she was crabby because of her period. Her period actually ended on her crabby day but what surprises me is that she said that. I have not talked about hormones effecting behavior either seriously or in jest. I wonder where she heard it. And this, just another sign of her being in her world.)
I mulched another part of the front garden for most of the day. Did three trips to the mulch site — city owned and managed — and loaded up my plastic containers and black leaf bags. I can only take as much as I can hold in my trunk. If I use the back of the car, it stinks for most of the summer. I’ve been doing one or two trips a day and gotten tired and sore. Evidently the gardening chops are coming back. Whew.
Much later. Night now. Sitting outside on the deck in the dark. It is still delightful! My neighborhood is as quiet as a small city neighborhood can be. People walking dogs chatting on phones or walking themselves with partners or friends and doing the same live. Traffic from the surrounding busier streets and sirens going to our nearby hospitals — sirens and ambulances have such powers of remembrance. So this is not the country like I imagine my sister’s porch on her farm in Virginia. This is not a mythical fire escape in Brooklyn, but there are a few stars above, enough to wish on, and the leaves are finally thick enough to muffle the outside world. I am pretty happy sitting here tapping away.
So, sitting on my deck in the dark tapping away is something that I’ve often longed to do but have kept myself from doing. All the is conventional in me knows that my mother would have disapproved, and probably David would have disapproved. And once the mosquitoes come out in full force, I will need no one’s disapproval to send me inside. But for tonight, for right now, I am grateful for this delicious night. I am grateful to not care if I am seen and thought odd. I am grateful for stars and leaves and fresh spread mulch. I am just grateful.
I read this lovely blog piece this morning “disney das” (http://adiaryofamom.wordpress.com/2014/05/29/disney-das/) — a review on the revised program at Disney for access for people with challenges. I thought it was pretty evenly written, no rants and few complaints. I agree with most of it. Like that writer, Julia and I managed the theme parks pretty well at Christmas. We were very laid back and Julia is very able to understand that we could sign up for a ride and then come back later, but like the writer, I need to acknowledge that the current policy would have been a night mare when we were there a few years ago. And I think about those in our position a few years ago, those who will never be in as good a position as we were a few years ago, and wonder if that “happiest-place-on-earth” will even be a possibly for them. There are always a few comments to that type of blog entry that show a complete lack of understanding of the family that have members with challenges. The writer was accused of wanting a “better experience” for her children than is possible for other children and of taking more than her fair share of rides when a child with autism is skipped to the front of a long line. One commenter — parent of a child with a “real” disability which translates to a physical disability — expressed his/her disapproval that the rise of autism diagnoses is the real reason for the change of policy. If one in 68 kids gets a diagnosis, might that translate to one in 68 disney-visiting families asking for special treatment? And how is that “fair” to those with “real” disabilities?
I admit to the usual initial feelings of anger and frustration towards these commentors but as I read on, it was the lack of understanding, the lack of generosity and the scarcity thinking of the writers that breaks my heart. There was unwillingness to stand in the shoes of another. Selfishness and utter and complete self-absorption. Most of all, it is a lack of imagination.
Visiting popular theme parks can take planning and strategy for all families, but how many families with typical members plan that same way when they go grocery shopping or holiday visiting to grandparents or to the movies or a sibling’s school play. How many parents need to scrutinize childcare providers for their 15 year olds or teach their children about safely crossing streets every day for three years. And all of this kind of planning is easy-peasy compared to the planning that some parents engage in. And so, that GAC (Guest Assistance Card) at Disney was a gift to those families. For once, a family could indulge in the pleasures of an amusement park the same way that typical families go food shopping. I guess to that extent the situations of families with typical members and those with members with disabilities changed places. It was the typical families who needed to engage in strategy to make their way through possible melt downs on long lines — still the typical four year old’s melt down is unremarkable compared to a nine year old on the spectrum tantruming. The families with kids with disabilities was free to indulge in delights the way typical families might go from store to store in a shopping mall — almost unimaginable for many of us.
How to open the hearts of those who feel the pie is too small for pieces for all? There is enough! How to build empathy, compassion and community? Even at a theme park and on a school bus. Surely, this is what we all need — those who would begrudge Julia and I skipping to the front of the line for “It’s a small world” and me who can easily conjure up a dozen uncomfortable experiences to “help” the complainers understand my world.
Yesterday, Julia rode the school bus home after a splendid day at a field trip — civil war reenactment camp. I chaperoned and got to spend the day with kids and teachers and parents. All rather blissful even including the canon firings which are extremely tough on Julia, but she watched the “soldiers” load the cannon with arms around me, one ear pressed to my chest and my hands firmly over her other ear. The sound was still painful for her but she recovered . . . well, like a resilient kid, which is a description that could be called a miracle.
Then, on the school bus home there was more bullying. It was not an isolated event. Julia’s has gotten good at ignoring it and her allies — especially two boys from her class — are good at standing up for her; however, the behavior seems to be escalating. The perpetrators laughed at Julia, called her names (stupid, I think) and said that she is never going to graduate. (An aside here — Some of the remembered damage done to Julia in China was being called ugly and stupid which she was told were the reasons that she was not sent to school with her bunk mate.)
At the bus stop, Julia got off with the two boys who are classmates. The boys pointed the perpetrators out to me. The kids they pointed out laughed and gave us all the finger. I don’t know these bad kids (yes, to me at this instant these are evil, bad kids with NO redeeming qualities) although they do not seem to fear that I might report them. When my sitter reported this same thing to me last Friday, I didn’t want to pursue it. It is so close to the end of school and Julia doesn’t ride the bus home much. I was going to let it slide. Perhaps it would get better, perhaps it would go away if we all just ignored it, but perhaps it is time to ask for some consequences.
Julia tells me that it isn’t so bad in the morning but in the afternoon (and she is only taking the bus home once or twice a week) they are really mean. Julia would rather have me drive her to and from school. Listening to one of Julia’s friends talk about the bad kids, I could see that he felt helpless to do anything to help Julia.
I struggle to be compassionate. I want to punch out those kids!
And then today, I spent the day at the first of a two-day seminar given by members of PACE Place (http://www.paceplace.org). They talked about what I’ve been talking about with out attachment therapist for years. The relationship between attachment and autism. Of course, I see the relationship because Julia was so deprived of relationship in China and to work on her neurological differences labeled as autism, we all had to address her lack of attachment, but these people talked about the inability to form age appropriate, healthy attachments in ALL people on the spectrum. It is very exciting. I think I sat nodding my head the entire day!
This team was also able to use workshop games with the group of 60 IDS employees (therapist, psychologists and other helping professionals) and parents as effectively as some of the best theater workshops I’ve been part of. The day was one ah-ha moment after another — lots of learning physically through metaphor and reflection. I was only going to go to one day because I didn’t want to leave Julia with a sitter for two days, but what I am learning is worth the missed weekend for both of us and thank goodness, her sitter is free tomorrow.
Finally, close to the end of the day, I had my huge ah-ha moment. I can’t connect the dots as to how I got there, but something was said that set off a chain of thoughts and I realized that Julia is learning to play her cello at the same rate as her peers (more or less) because somehow she started at the beginning of learning music at the same time as her peers. This is the first time that she is starting from zero with the kids around her. (Oy, I’m not being articulate here. Damn.) All the other things we taught her — English, numbers, reading, writing, APPROPRIATE BEHAVIOR — her peers were getting lessons in all those things years and years before her. No one gave her any of the basics — no one counted her toes, cheered her first steps, or ran to her crib when she cried. No one read books to her, looked at her when they gave her a bottle or taught her the tools of sharing. Or gave her enough to eat, for that matter. Julia has been playing a game of catch up since I met her when she was five and a half.
But most of the kids in her class were not handed a violin or cello any sooner than she was. She still needs to run to catch up with attention and focus even learning music, and she has not paid attention to music like most of her peers, but somehow she is not the same five and a half years behind in music that she was with almost everything else except for her art.
And so, what does this mean? I am having trouble bringing the lines together in my head. I don’t mean to overstate what I see. She and I, and her aide in strings class and her cello teacher, work very, very hard to make cello possible. But the fact remains that she is learning more like her typically developing peers than ever before.
I have struggled with the question of Julia’s ‘prognosis.’ Julia has not been considered high functioning but she is not just lower functioning. No one has felt comfortable labeling her because her development has been so interestingly inconsistent and her gains so surprising. I am not the only one who has noticed the spark in her soul. I still don’t know how to make up for, catch her up for those years with me that she missed, but through her cello we are experiencing her starting from a beginning and learning and staying abreast of the running herd.
Ah-ha.
Chasing Joy 