ferry beach, saco, maine

FUUSN retreat

I am all poetry and the small waves of this Maine ocean.

Yesterday, I started a post about the last week—challenges, transition planning, things that stoked my unhappiness and my anger.  Granted, they were things that inspired forward movement and the business of the next months.

But this morning I walked the beach in meditation.  Walked with some friends after reading the beginning of a Pablo Neruda poem:

The Sea

I need the sea because it teaches me.
I don’t know if I learn music or awareness,
if it’s a single wave or its vast existence,
or only its harsh voice or its shining
suggestion of fishes and ships.
The fact is that until I fall asleep,
in some magnetic way I move in
the university of the waves.

Continue reading

roots, wings, officers & self-pity

237D0ECB-BCFD-4BAE-8FF4-AEAD4D5CFD26The wedding and the week at the lake house were wonderful but not without snags and challenges—challenges that have continued into the new week.

On Friday afternoon at the lake, Julia had a melt down.  It was not about anything in particular and it was not the worst she has had but it hurt me pretty deeply.  We had spent the week with Cheshire’s new in-laws and they were lovely to us, to Julia.  We’ve been with them for holidays and the long weekend over the Fourth of July.  Their interest in Julia and kindness towards her cannot be faulted. Even their children are kind and loving. It was precisely for those reasons that Julia’s behavior hit me so hard.  She was making the situatin difficult and uncomfortable.  All I could see at that point was that I had brought a very difficult family to the table. Quickly my hurt devolved into self-pity. Everyone else was coupled, I was alone.  I could not even deliver Cheshire’s father to the wedding. Okay, that was not my fault. At least, I knew that rationally, but rationality had no place in that dark space.  My aloneness and loneliness, that I fought against all week, reared its ugly head. I saw myself as a taker and my move to Boston as a mistake. If I was far away, Cheshire could, for the most part, engage with her husband’s extended family without the challenges that Julia brings to every event. Of course, when I voiced some of this to Cheshire, she disabused me of the ideas.  Continue reading

our new world

F4797A75-796A-4825-A9D8-80FCB91A8BBFLast week, Julia’s inclusion facilitator (a post previously called “case manager” and hereafter IF) told me that Julia was not put on the bus list in error and if it was possible for me to drive her for the week, she would get the bus this second week of school.  I agreed, jotting down the bus as a topic of conversation for our meeting this week.  Sunday evening, the bus service called me to tell me when Julia would be picked up on Monday.  This morning the bus was early and so tooted its horn for us.  I went to the door and Julia was out a few minutes later.  I talked to the driver who actually seemed to know the the time quoted to me was too late and that they were still making adjustments.  She apologized that I did not get phone call before this morning about changes.  I feel like I’m living in some utopian bizarro world!  In Madison (I’m not going to repeat the bus saga, the sped bus never tooted its horns if Julia was not waiting for it.  A bus pulled up to our house, waited a few minutes and then left.  There were a few times when I complained the bus never showed up and the dispatcher said that the bus was there, waited and left.  If the bus was early, especially in the early days of ninth grade, it could have escaped our notice.  So, this little curtesy, a tooting of the horn seems like a miracle to me. Continue reading

of big snow flakes and natal days

More Aboriginal Art that I did not buy.  Next time!!

When I go to open the journal/blog file and it is not in the “most recent” list, I know for sure it has been too long.  My fingers ache with my scribbling deficiency but my head is stuffed with Earth Science facts, easy algebra and a lesson on loving myself from James Baraz.  

Lately, I have not been happy.  A bit overwhelmed and second guessing myself about my big decisions.  Dissatisfied and pining for a different life. This morning, life is good! Continue reading

dancin’ dino

IMG_2749Our dancin’ dinosaur tee shirts arrived by mail yesterday. Julia was tickled and couldn’t wait to wear one of hers today to school. Lots of friends have ordered shirts and are posting pictures on Facebook. Every picture puts tears in my eyes. Three teachers from Randall posted a picture, all three of them with dino shirts and “I love Julia” scrawled on the board behind them. There are no thank you’s enough. And I pray that this is a beginning, not the highlight. I hope that this incredible talent is yet to be developed and will carry her far.

Who knows what can come, there is no way to capture a moment and keep it close. I ride this small happiness, Julia’s small accomplishment and hold on to hoping that her life will unfold gracefully and with much happiness and independence. I know, I know, it is the same with all kids but it is different when it is not assured that your kid will grow and mature and come into their own. It is different. And hard. And joyful.

This being a mother of a kid on the autism spectrum is not for weaklings and scaredy cats.

Some notes on the first day beginning of middle school that I began last week:

Day one is over and day two begun. Actually today, day seven is almost over.

Julia liked her first day. In her assignment notebook she wrote on the first page that she loved Wright Middle School. This morning she remembered the names of her homeroom teachers (one is her special ed teacher) and her SEA (aide). She ate chicken nuggets and french fries for lunch and also loved them. There was perhaps also an apple that she ate. There is no sign that she is interested in bringing healthy lunches and at least at this point it is not worth any fight on this one.

She continues to like her school and the experience. The first set of challenges are about listening to bells and whistles that start or end classes and activities, and also at moving independently from room to room. At Wright, the sixth graders only move among a very few rooms but it is still very confusing for Julia. I think that part of the confusion is about the new sounds — noise — and stimuli that distract her terribly. If she continues to be confused and unable to move from room to room, I’ll ask for some help there. Although I want her to be independent, I want to her to learn content as well as independence. And I think content should come first.

Julia willingly is willing to get up and dressed in the morning. We have not laid out clothes each night like we did it all last year. This year she wants to pick out her own clothes and pending my approval, she does a pretty good job. Have school begin an hour later than at her elementary school is really golden! I am so much happier to get up at 6:45, than 5:45. At 5:45 I can hardly drag myself out of bed, and I am not effective at dragging someone else.

This morning I dropped her off — a bit later than planned but that was more due to my own confusion about when bells ring than to our morning routine — by the gate of one of the playgrounds. It is probably not called a playground in middle school. Other students were already walking into the building. She very cheerfully hopped out of the car and joined in the throng walking in. She immediately struck up a conversation — perhaps started talking is a better way of saying it — with two girls who were probably not sixth graders. I watched them look at her and then say something that I couldn’t hear. Oh god, I hope there are kind kids in this school! Julia has developed into a very friendly/talkative kid but so much of what she says is border line inappropriate or unintelligible. She needs more listeners who make sense of what she says.

Last week, Julia took the tapes off her cello. Yikes! She was jubilant; I was/am terrified. Her teacher do not really believe in taping cellos. The tapes I’m talking about are very narrow bands of sticky tape on the finger board of the instrument that mark where the first three or four notes are. It is a guide for beginning students and it seems to be quite a security blanket for me. Instead of using the tapes to figure out where the fingers go, Julia (and I) will need to use our ears. At lesson, she took the tapes off and played two tunes better than she ever has played them. Ok, I get it. But I hope it works at home. I am skeptical. I can’t help it. I am not a musician. Her teacher says she has a good ear. I don’t think I do.

While her cello teacher was giving me the rational for removing the tapes, Julia was figuring out the next tune in the Suzuki book, “Go Tell Aunt Roady.” So her teacher assigned the song as long as she memorized the one she has been working on by next week. Julia said, “sure.”

We also may be renting a cello from her teacher instead of from the school. That means that her practice instrument will be a lot better than what she has now. I think she would appreciate that.

I am starting something new on the iPad. Julia wants to play games on it and she also wants to get back to playing with her wii. It dawned on me that game time needs to be reward time. And also limited. I decided to link game to to writing prompts in her iPad journal. I’ve been giving her three: three things she did in school, what she ate for lunch and how she felt after a day at school. I began by sitting with her as she wrote and then correcting grammar and spelling (mostly capitals) when she was finished. This week, it was best when she did it in the car on our way to her therapies. Best because it is close to the end of the school day and she can remember better what she did than if we wait until she gets home close to dinner time. I’m also not looking for a lot of writing. She really can’t do that well and stay on topic. And some of what she is writing is funny. I am sure that her social studies teacher did not mean to emphasize the importance of using shampoo to clean hair. I’m not doubting that he said that, just the importance he put on it. I put her picture from the first day of school on the first page. I want pictures to be a part of the journal, (We used pictures alone last year. ) but I don’t want to burden her teachers with another task until everyone is more settled. For writing, she gets 20 minutes of game time to be used as she likes. Right now, she plays the HP lego game on her iPad.

My notes:

Fall is always the beginning of a new year for me. Another go at improvement and reinvention. Or at least a refinement of ideas, processes and goals. This year is no different.

Towards the end of the summer, my meditation practice really fell off. Too much Julia time or rather my perception that I had to spend time on addition instead of meditation. Probably a mistake. Immediately correcting that one.

The garden needs attending and I want to seed the lawn. The next few weeks are crucial. The compost needs emptying. I found some great perennial bargains at Builders Square. Also, I have perennials and corms to dig up and divide, as well as an over abundance of hollyhock plants to move from the front to the back.

Interesting thing about my hollyhocks. I love them! And I’ve managed to get quite a good backdrop of them in the front terraced garden bed. But this year for the first time since I planted seeds, I’ve only gotten plants and not flowers. Since hollyhocks are biennials that bloom only in the second year, I usually have some flowers and some plants every year. I am not sure what happened to my flowing two year olds this year. Was it the awful winter? I need to thin the plants and dig up some that are in inappropriate places. Hopefully, next year, I will have flowers in the front AND back gardens.

Contacts have been made and interest pursued. It looks like I may be leading a mindfulness group for caregivers – parents, grandparents, sitters — at IDS. It would be my toe in the waters I want to wade waist deep in. I’ve sent a mock up of a flyer to my contact at IDS and I await the PTB’s approval. Even if I get it, I know that there is a decent chance that no one will sign up for the circle. It happened last year with the Special Ed PEG group. I hope this is different. It would be a lovely way to begin.

Julia and I are moving on with our knitting. She is making a red and yellow scarf. Yes, Gryfindor colors. I am ready to make a hat. It is rather amazing to me that one of my newish friends is a master knitter who is very willing to teach, advise and answer questions. Perhaps others will not see this as amazing but the saying “the teacher appears when the student is ready” keeps running through my mind. I’ve believed in this idea before I ever recognized that it was happening to me. These days, it seems to be happening all the time. Often at least. And I am deeply grateful. I am also struck that I have done so little to merit or deserve or warrant such attention. When another friend called me to urge me to come to a newly formed book club, I felt the same way. How did she know that I really wanted to join a book club even though I had done nothing about looking for one? I have the feelings of being cradled in community.

This feels like a long, overdue letter to a friend who needs to be caught up on every part of life. It needs to be put in its envelope and sent on its way. I’ve promised myself to write every day — just 200 words but write. I am hoping for rebirth.

question of balance

The summer is slipping by. I begin entries and never finish. When I get back to them, they no longer seem interesting or relevant. So this is mostly a catch-up in an attempt to begin again.

The summer’s curriculum seems to be producing progress — borrowing and carrying over seem to be imbedded, counting money up to $2.00 is coming along and she is getting better at our formulaic word problems. Julia continues to graze as she reads. She picks up books that she knows or doesn’t know and thumbs through and reads a page or two. We do read in the more traditional way together, but if she read from beginning to end by herself . . . I don’t know whether to just allow grazing when we are not reading together and hope that she comes round to wanting to know whole stories or to somehow make her change. I have no idea of how so the point might be moot.

Drawing is exploding mostly due to private art lessons with Julia’s Randall art teacher. Kati is amazing. She knows art and what kids do and she knows Julia. It is clear that Julia is ready to learn about her art — how to draw, make prints, layer on color — and I cannot do it. I am so grateful that Kati is in our lives and I hope that we keep collecting wonderful people who can push Julia on.

An example: a few weeks ago, Katie had Julia draw various views of her cello — front, back, side, 3/4 view. They worked on the exercise for two week. The first week, Julia did nothing when Kati wasn’t there, but after the second week, bits of the lesson began appearing in Julia’s day to day drawing. She drew a picture of herself during therapy with Marilyn. Julia has not worked on faces and so is usually not pleased with her work. Her faces are usually full on and make no attempt to capture someone. The picture she worked on that day had her in 3/4 view with her glasses on. She did not quite get the nose and mouth but she had her eyes and glasses right on.

And Julia’s glasses. Oy! She broke the first pair’s side pieces. Not surprising. These are costume glasses and she has worn them everyday since November. We are scheduled for a check up and probably new lens in the fall so I didn’t want to find new frames and have new lens made. I found another costume pair and had the lens fitted in. Those were broken in less than two weeks. When I went to buy a third frame, I realized that her lens, being prisms, have a particular orientation in the frame and she may have found the second pair totally uncomfortable because they were not set correctly. The third pair is in Milwaukee being set by the person who made them to begin with. My take away from this is (1) to move to real frames, probably plastic which can take some wear and tear and (2) to find someone in town to make them up.

We both continue to improve in our knitting. Julia is making a blanket for Lizzy, the dinosaur, and I am making fingerless gloves. Both incredibly easy and straight forward. I am both looking forward to and delaying moving on to more challenging projects.

I attended my first Buddhist retreat. Non-residential and silent, three days of sitting, walking and listening to Sharon Saltzberg. I signed up without really knowing what it was like and was apprehensive the first day. The silence made it easy to begin. No need for small talk or the nervous energy of politeness. I did not realize that the teaching would be about meditation technique — no philosophy for its own sake – which was wonderful! I’ve needed exactly that for a bit less than a year now. Sharon’s emphasis is loving kindness meditation although she’s spent some time talking about mindfulness. It is like being corrected while doing barre work in a ballet class and the days passed quickly.

Once again, Julia did well in swimming lessons at the Shorewood Pool. She learned the butterfly kick and watching her cut through the water reminds me of how much I want to develop a sport for her. We’ve tried horseback riding — too many cancelations due to weather to hold her interest and to keep her progressing — and softball with the challenger league — a bit too much support for her but she is not ready for regular softball. She is a natural at swimming but to really progress, to learn all her strokes, she needs lessons year round. She also needs the lessons to be private. A half hour of working one on one with a teacher is equal to a week of group lessons. I am not sure we can even fit that into our school year calendar and not sure if I can afford it.

It is a question of balance. Where to spend the little bit of time we have? Is it in a real therapeutic setting like IDS where social skills are worked on one step at a time. Or is it in training skills so that a day will come when those skills can be implemented in real life social settings. This fall we will have 2-3 sessions at IDS, attachment therapy and speech therapy. To that I’ve added cello lessons. Now I am thinking of swimming. This does not account for any after school activity that she might like to do — I’ve heard that clubs are a big thing in middle school and she announced today that she would like to be in plays at school. She really enjoyed her experience in the summer music camp.

And there is never a way to ease into anything. I’ve already made speech appointments for most September and IDS has pinned us down to fall semester days. Up to last year, school did not come with much homework and her IDS therapists could always be relied on to do some of it during their sessions. As we’ve changed therapists at IDS due to graduation and attrition, I cannot rely on the newer therapist to do any of the “school” work that Julia comes with. If that continues, we need to set aside more time at home.

The stress of trying to second guess what will work best is an incredible waste of energy. Yet it is not possible to just let things happen. And for heaven’s sake, the kid needs some down time at home to just fool around.

Umm, fooling around. Julia has discovered the Rainbow Loom (http://www.rainbowloom.com) and is now sporting about 10 elastic bracelets on her arms. I have one that she made for me. She is making gifts for her China sisters and wants to learn to make more complicated bracelets. It makes me smile because when her peers were doing things like this, perhaps this very thing, a few years ago, I did not imagine that Julia would ever do it. I thought it was another experience that she would miss. And I think she is still in the general age range for this craft.

On another note, it was interesting to find out how awful I was at following the directions for this craft. I read the printed instructions and watched youtube videos. And was pissed off the whole time. I think I felt exactly that way about learning to knit and crochet when I was a kid. Leading me to believe that I may be creative and artsy but not craftsy. Another kid looked at what Julia was doing wrong (probably do to my instructions) and fixed it. Since the fix, Julia has been successful making her bracelets.

I’ve had my first brush with Child Protection. It was reported during music camp that I hit Julia. A social worker interviewed Julia and came to the house. The experience was filled with stress but ultimately ok. So far, at least. It is also not surprising. For years, Julia has come home from school and told me that a teacher punched or kicked or pushed her. These are not lies exactly, mostly misperceptions. We talked frankly about the consequences of her tellings. She does not fully understand what is appropriate to talk about and when and to whom. Her filters are faulty or not in place. Being taken out of class and talked to by a social worker intent upon drawing information out of her scared/jarred Julia some. For me, it was humiliating — not grossly — I knew it would happen one day. Julia has a way of always addressing any excessive pride and taking me down a peg or two. The build up to the home visit was much more stressful than the visit itself.

There is a certain amount of feeling satisfied with this summer. Tasks, errands, lessons, cooking, gardening, swimming, finally reading (a very junky book). Not much towards any goals apart from borrowing and carrying over. Writing has been manic at times, journal-like self-indulgence (Yes, even more self-indulgent than what I put here.) and then fallow. I know that pace of days will change again when middle school begins for Julia. I aim not to push, to wait for what is coming and at the same time to prepare for it. I feel close to something although close might be in September or two years away.

And finally, we both got hair cuts. A trim for me and nothing special but Julia has bangs! She was not in favor at first but she looks adorable and she knows it. She can brush it in the morning and doesn’t need clips or bands to hold it back. She can even swim and come out of water with hair in her face. I’ve dithered about bangs for her for an entire year. Bangs are a commitment. Bangs take forever to grow out. Bangs might make her look too young. However, on balance, it was a great decision.