30 June 2010

Pictures in the gardens

Julia today

As worried and angry as I am about David, I am blessed by my girl. She is still Julia Dinosaur, and her toys are scattered all over the floors, and little bits of paper and material fly about the house as she cuts cards, pictures and dinosaur clothes. And I don't know if I can write tonight about how amazing this child is with the whirlwind of emotions about David flying around my head.

We had a session with Marilyn, and although Julia said that she wasn't going to talk to Marilyn (our attachment therapist), as soon as we got into her room, Julia started talking. She knows that Marilyn will challenge her about her dinosaur status and she is ready to take her on.

First, Julia read her book, "The Day Leo said I Hate You" to Marilyn, but before she finished it, she tested Marilyn about her "name." Marilyn took the bate and they started talked about if Julia was a girl or dinosaur and why. Julia managed to tell Marilyn that people told her she was ugly and bad, that they made her sit in a chair for a long time, that she fell and hurt her head, that she was a bad person, and that they told her to go away. Julia said that she left the orphanage. I wonder if this is true. I've always assumed that Julia was a trouble maker. I wonder if she had that kind of nerve. She has threatened to run away when she is angry at me, but she has never made any sort of an attempt. Julia talked for a long time and then wound up with a pillow in front of her face telling Marilyn that she did not like her. Julia was in my arms or next to me, or touching me somehow the entire time.

Julia does talk and then pull back, like waves on the beach. I hope that it is a bit more each time, that she is going further into her core so that at some point she can come clean and be totally with us. I watch what is taking place and I support her all that I can, but i have no idea how the process works. Marilyn and I have work at and on Julia for about a year and a half and I had no idea of how we were going to get this far. I hoped we could but did not see the path at all. And now, I cannot see how it will all get resolved. I cannot see our path to healing, but I trust that it will come.

We went to the botanical gardens after seeing David. Julia found tadpoles in a water Lilly pond, and she laid on the floor of the Thai Temple to look at the ceiling. A ten month old baby was crawling on that floor and was thrilled to have someone join her. Julia is such an artist. We will have a wild ride if she is able to follow her bliss.

Julia continues to be kind to me, to take care of me. Telling me to put on my music in the car and letting me sing. Oh, she always tells me not to sing. She is being gentle with me, and I am so grateful.

David today

Need to dump lots of stuff tonight, and I know there will be no sleep for me until I do. And so, to start --

David is getting better -- tonight, without letting me know, they transferred him to step down cardiac care. (Gosh, shouldn't they have let me know?) His "numbers" have been getting better, and he is on less meds for almost everything. His sugar is persistently high, higher than it ever has been, and so he needs more insulin.

I am very concerned, however, that David in incredibly weak. I've read that some people take a long time to recover from gall bladder surgery (David has not had surgery, but that is the only gall bladder information that I can find). He is having trouble feeding himself, cannot stand or move about in bed by himself, and is unable to do things like hold a phone to his ear without letting it slip away. It took two people to get him from the chair to his bed. For the last few days, the med staff has said that it is the effects of sedation but now they are admitting that the sedating drugs should be out of his system by this time. His liver and kidneys are not functioning well, but even so, he should be clear of sedation. I asked whether they thought that David might have had a stroke, and the nurse told me that she has done a neuro exam and he came up okay. So, I take from that, that someone else had thought about the same thing.

David is also not eating. He tells me that he does not like the food that they are offering him and then, I heard him agree to order the same food that he refused to eat for lunch for tomorrow. David is usually not a pushover, especially when it comes to food, and so I am flummoxed here as well. It is also very frustrating for me because I cannot be at the hospital 24/7. Julia was supposed to be my summer companion and although she as at home therapy for hours a week, it is in 2-3 hour increments and that doesn't really spell much time at the hospital. I take her to the hospital at times but only for a short time -- usually I try to make it lunch time when she will have plenty to do -- eat, play, watch a movie. I have asked Cheshire to come home and she will tomorrow night. Maybe she will see everything differently. At least, I will feel that there is someone else to take care of David in the hospital.

But there was a worse part of the day, something that I did not write about in my update email (most of which is what is above). When the PTs were in to give David some exercises, they asked him how many times he had collapsed. He told them twice, but I was sure it was only once, on Saturday night. But that was wrong. He collapsed another time a while ago -- he could not say when -- and did not tell me, and worse, did not tell his docs.

I am furious!

I have been worrying that David has been doing too much -- too much rehab and going straight to work. Too much work. He says he works half time. I think it is more, closer to 3/4. As long as he could do all of this, there was no reason to stop him. When I've asked, he has said he was fine, but he has had a persistent head ache and has been complaining about fatigue, but not enough or to the right people. Neither of these complaints have been checked out.

Is this being macho? Is this being that rugged individual?

I have been living with the assumption that we were on the same team. When docs have asked me questions in the last few days, trusting that I knew how David was doing, I told them what I knew. Now, I am scared that what I said may not have been the truth.

Oh, I feel awful tonight!!! And of course, I cannot talk to the one person who I talk to all the time!! He is too weak to hold that phone.

Scared. Plain scared.

Wednesday morning

Thank you, Sharyn, for what you said. And thanks to others who have commented. This is a tough one for me. Encouragement and advice helps.

Julia and I slept last night. It has been cool at night and we are sleeping and living with the windows open and breezes blowing through our rooms. Oh, I like this so much better than air conditioning -- not that I mean to poo-poo the cool mechanical air in our vents when it is steamy outside. I just love the open widow summer air. It is so real.

I came home last night a bit past 8 to find that Ellen and Julia were just ready to go up to bed. They had made cookies (and cleaned up so well that this morning I marveled that there was no sign of baking at all apart from the tin of treats). I feasted on the end of a shredded brocolli salad and cookies, as Julia and I watched a bit of one more movie. Julia suggested one of my favorites and not My Little Pony or one of hers. We ate cookies in bed and yes, there are crumbs. Who cares! We snuggled into covers and tickled. It was all good.

I turned out the light and layed with her (as per usual) but never got up again. Thankfully, I had locked the doors and generally had the house ready for night, but left a few lights on and the dog never got her last walk. But we needed the sleep.

This morning, I woke up before Julia which is pretty rare. We usually have a therapist over right now, but she appears to be late or missing the session. It is fine. We have Marilyn this morning and then the day to ourselves. I plan to visit David, hopefully have lunch all together, and then go to the pool for awhile.

I realize this morning and as I write every minute of my day, that I am lonely. I am talking to a few friends and of course, Cheshire, but I miss a body here to trade the day with. I think of my single mom friends. You are fantastic. I don't think I could do it.

So many lessons.

29 June 2010

Tuesday evening

I/we are getting through another day. Julia does lots of therapy on Tuesdays and apart from her regular morning absolute refusal to see anyone, she did great. When we went to clinic, she said good bye to me, took Cortney's hand, and said, Let's go upstairs. She was also pretty compliant when I told her that Ellen was going to come over after Stephanie and babysit for her.

And so, I am here sitting by David's bedside as he takes an after supper nap.

David is doing better today. He passed his swallow test and they let him have lunch and dinner. Unfortunately, he is weak as a kitten -- a very young kitten -- and he cannot pick up his own fork. He managed to say a few words to Cheshire on the phone, and he asked me a few questions, but most of the time, he is sleeping or very much out of it. He is not interested in watching tv, and there is no question about reading. This is sick. I guess I expected more bounce back today, and the degree to which David is sick is scary for me.

And I am afraid the way that Julia is usually afraid -- a little testy, angry, uncomfortable in my skin. Interesting to see it in myself.

I am cranky -- tired, stressed, frantic. I am keeping up and getting what I need done, but I am almost bored with my tasks. I don't have the energy to teach Julia or the right time to take her to the pool or for walks in the woods. I am trying to cut myself some slack and just go with what is happening, but I was ready to travel and party this weekend, and part of me is a pouty kid feeling sorry for myself. I'll get over it.

And I am not an inspiring nurse.

28 June 2010

I think a little blogging time is in order. It is Monday afternoon. Julia and I went to speech and OT this morning before visiting David. Then, I took Julia home to be with her therapist, Morgan, who is staying on to baby sit. I came back to sit in the hospital and wait for them to pull the breathing tube out of David's throat. How did a breathing tube get to be so normal a part of every day life? I've talked to David's Dad and Cheshire, and written a long email to a friend. I still wait. I called Morgan to extend her time another hour with the hope that I will be here when the exebate (spelling???) him. I've gotten pretty good at hospital room sitting.

The answer to David's Saturday night question about whether we should call 911: David's heart doc came in to talk to me (which was very nice b/c he had already done rounds). He told me that David was "really sick" on saturday night and that he actually "kind of scared" the ER docs by getting sicker right before their eyes. He told me that it was very good that we got to the hospital when we had. And so, to David's question: Yes! Yes. Yes. It was the right time to call 911.

So people ask if I am alright. Nurses ask. Do I look that bad? I am fine; I am so disappointed we can't go to Chris and Sophie's wedding. I have faith we will get through this; I am scared this is what our new normal will be like. I am in charge and together, I am a mess and falling apart. But do I look that bad?

I am still reeling from Saturday night's adventures, almost but not quite on a steady keel. Some things I am noticing:

I am awful at figuring out what someone wants when they can't speak. It took me 10 minutes to decide that David really wanted to sit up a bit. I just have no skills at interpreting physical needs.

I am finding more and more ways, ordinary, everyday ways to teach Julia. I am taking very seriously this idea of teaching her what she wants to learn. She asks about all the tubes coming out of Daddy, and what they are for, and if they hurt, and if they are brushing his teeth, etc. And I tell her what I know and ask the nurses to explain the rest. And Julia goes home and sets up her squirrels in the play mobil hospital and the doc squirrel put an IV into Zoe squirrel. I notice that she is pointing to numbers on elevators quicker and I ask her to do it more often. I notice she is answering more questions and so I ask more. Small thing all. Clearly, I will not be doing much formal teaching this week. I am just trying to get from day to day right now, keeping us going, keeping us in food and clean clothes. I am hoping for a really good night's sleep tonight. I am hoping that Julia still wants to read her current favorite book.

Finally, finally, the docs have taken the breathing tube out of David (5:10 pm). He is not ready to be awake and talking but from what they say, today has been a very good day for him. Numbers are improving. We need another day or two to see what his time line will look like -- when he will come home and what kind of recovery this will need -- but he is definitely improving now. "He turned the corner" is what the doc said. I am thinking that David is sicker than I've ever seen him. The docs are pretty comfortable and confident that they can fix what is wrong, Still, it is scary to see him so very sick.

27 June 2010

Tough day today and my girl has been pretty good sensing that Mommy is exhausted and serious. I am so grateful for this. She does mess up a house quicker than I can shower, can wash a few dishes, can run upstairs for a hair band, but then she is nine years old.

Yesterday, David didn't feel well -- he hadn't felt well for a number of days, but his symptoms were fatigue and a head ache. Neither of us thought that the symptoms amounted to much. David called his transplant coordinator on Saturday morning and she told him that they would see him on Monday. So, it might not have just been us that missed our cues.

We did a little shopping and when we came home, David was exhausted. We watched a kid's movie and David napped, but as evening approached, it seemed all he could do. His stomach was bloated and tight, and he didn't want lunch or dinner. I entertained Julia, made her some supper, and again, we watched tv with David. I put her to bed, and after she was asleep, I went to walk the dog. When I came home, David up still upstairs in Cheshire's room laying on the bed, or so I thought and I turned on the tv to relax a bit.

I heard David call and found him on the floor in the bathroom where he has gone to throw up (very unlike David) and had fallen over. I told him I was going to call 911, and in the best statement of the day, he said, "Do you think you should?" I laughed, assured him that I should, and made the call. It is not easy when you are a basically healthy person to give into needing help. That runs deep. Was David asking, Is this serious enough? Is this when I really need that much help?

There was something very clear for me about what happened. I knew I should not move him. I knew we needed help. I was able to made the call in a relatively calm manner. Later, I reflected that although I have often wondered if I could manage a crisis, if I could respond to emergency, I now am sure that I can. This thought, late last night, made me feel safer somehow. I had also been thinking about living in the moment as I walked the dog -- it is something I felt so strongly during the transplant days and have been losing as life had resumed a more normal flow. I know it has benefit -- I was open inside to something that spread out from the core of me. As of yesterday, I had fasted for 3 days and was thinking that I would try another day or two before we travelled. I have not fasted since Julia came home -- I need real selfish time for a fast. I was in the right place and could do it. And could also break it with juice and then some protein after David was taken in for his procedure. Fasting cannot survive, at least for me, with stress.

If anyone is reading this, please forgive the self-indulgent mapping of my feelings. I need this space tonight to dump my experience.

Are there good 911 services and not so good ones? Madison has a great one. We also live very close to a firehouse and in a very short time, the ambulance and a big fire truck pulled up to the house. Just in case anyone wanted to know if anything was going on, lights were flashing and sirens were blaring. Five big guys came in with paramedic stuff and went about their rescue. I called the hospital and the transplant coordinator. It was short of chaos but there was a strong vortex ever pulling.

David never passed out -- at least from when I found him -- and he was able to answer questions. The guys secured him to a chair-stretcher and got him out of the house. This house never feels smaller than when a bunch of big guys walk around it. Three guys and David in the bathroom is almost a record.

My wonderful neighbor, Maria, answered my call for help. She came over and stayed the night with Julia. Now, Julia slept through the sirens and flashing lights, the five paramedics in the hall and bathroom, doors being opened and closed, and a plethora of noises. This is the same kid who will wake up if I sneak out of bed and the stairs creek. I don't know what it is with her, but it is as if there is sense of protection, of linked purpose, and maybe of trust. Throughout the transplant process, she has instinctively reacted in very helpful ways for days and weeks on end. We do pay for this later it seems, but I can take the days when fear takes over which has been happening when all is calm again.

Later in the night, there was a thunder storm and Julia did wake up for that and finding that no one was in the bed with her, she made her way down stairs and stayed up for quite a while -- two kid movies worth before Marie told her to get to bed. The blessing in this was that when I got home around 7 in the morning, Julia was still sleeping and slept for two more hours before she was ready to start her day.

David went by ambulance to the hospital and I followed by car. It was a bit after 11 by that time and I was both pumping adenalin and exhausted. I was taken to his ER space and then the waiting began. David's pain kept increasing and the docs were reluctant to give him any pain meds because his blood pressure was dipping and his list of meds made it hard to prescribe without talking to his doc. Cardiac docs were called, x-rays were taken, surgeons were called, more x-rays were taken. Blood work, eeg, and something else was done. Still, more pain and no answers. And I have to say how lucky we were to be home when this happened. I don't mean that Madison is the only place with good medical care, but there they could call up his file and quickly talk to every doc they needed to. Right this minute, I wonder if we can ever travel again?

The consenus was that David's gall bladder was very large and something had to be done. Surgery was first suggested but later it was decided to put a drainage tube in the bladder to reduce swelling and pain. The docs will reassess in the next few days.

It was sometime around 2 when they brought David from the ER to the Cardiac ICU. I was put in a waiting room as the nurses made him comfortable, attached him to numerous IV meds, and got him ready for the drainage procedure. One of the nurses made sure I had a pillow and blankets for the couch in the waiting room. I didn't expect to sleep on that couch but as I waited during the procedure, I slept.

David came back to his room, sedated and with a breathing tube down his throat. They left the breathing tube in today. Hopefully, they will take it out tomorrow if he becomes more stable. It is a waiting game right now. Cultured blood takes days. The docs are waiting to see how David responds to the antibiotics and whether the draining of the gall bladder relieves pain and aides in healing the bladder, or at least shrinks the bladder enough so the docs can take it out.

Today, David didn't look any better than he had right after the procedure. His numbers do look good, and they have been able to cut some of his blood pressure meds. Oh, I hope that tomorrow we see change.

A bump in our path

Last night David was taken to the hospital feeling quite sick and in pain. After pokes and tests it seems that he has be very infected gall bladder -- they don't know the source of the infection yet but labs are underway. The worst part of the ordeal for David was intense pain. Because he is on so many meds, the ER docs did not want to interfere and held off for a very long time. Finally, at around 3 am, they decided to drain the gall bladder (instead of operating b/c of too many risk factors). I left the hospital around 7 after the drainage tube was put in and David was as comfortable as he could be.

26 June 2010


Julia is playing with this tiny bunch of plastic flowers and bouquet stems from a playmobil garden set. There are five different colors of flowers with at least 6 flowers in each color, there are also at least five bouquet stems to put the flowers on. She took all the flowers off the stems, sorted them by color, put them on bouquet stems by color, played with her squirrels a bit with the single color bouquets. Then, she took the flowers off the stems and sorted them so there was one of each color of flower in each pile and again she is making bouquets.

Now, what should I be doing. Just let her sort and gather? Point out to her what she is doing? Suggest that she resort in some special way? I can see that what she is doing is a pre-math exercise but . . . is she learning? Should I be doing something or just let her do it herself and talk about it later? Do I have to talk about it?

There is soooo much I do not know.


Julia decided yesterday that she was going to learn to read a book, The Day Leo Said I Hate You, by Robie H. Harris, illustrated by Molly Bang. Each therapist who has worked with her yesterday and today has to go through the book with her, pointing to each word, some of which Julia knows, some she needs help. I went through the book with her last night before bed with her reading and asking for help. Each time she seems to know a few more words.

Julia's engine is running fast today. She is having a hard time initially focusing on activities with Morgan, today's therapist, and she is speaking very loudly. We are still getting a lot of pulling her shirt over her nose. Sometimes she walks around like that for hours. Sometimes it is for hanging out on the couch. People do stare when we are out. I don't know if Julia notices, but I get that mother bear feeling inside.

David is not feeling well today -- actually, not for a couple of days. Headaches, fatigue, and shortness of breath mostly. At home numbers are not bad at all, but he called the docs. He will see them on Monday. We are both sighing over this one -- our first planned trip since the transplant begins on Wednesday. We will do what we have to do.

Yesterday, I received my acceptance into UW's LEND program for this fall. I will be in school from September to May in an interdisciplinary leadership training course for people interested in becoming leaders in the disability community. I hope to be placed in the intensive autism group which focuses a bit more than usual on the spectrum. I am also hoping to do some individual work with researchers investigating issues of international adoption. I am very excited although I have no idea where it will lead me. There seems to be a pregnancy of possibilities, none of which I can conceive of at the moment.

Last week, I read a post on one of my yahoo groups about an 8 year old, home for a year from China, with absolutely no motivation to learn anything. Her parents have had her tested and when she does participate, there is no show of cognitive disfunction. The school has no idea of what to do with her/for her. In one sense, it is astounding that schools know so little. Are all cases really isolated? Or do most kids sooner or later catch up, or not?

23 June 2010

David is at the hospital getting the more extensive lung biopsy, Julia is downstairs with Morgan, her first therapist of the day, and I am in the bedroom intent on finding out something about the ramforinkus, Julia's dinosaur choice for the day, making a few calls, getting July's schedule in order, and writing a few words.

Yesterday, one of our therapists cancelled her afternoon time and Julia and I headed for a short visit to the pool. We have been to the pool twice in the last week and Julia has not wanted to go into the water. She says she is scared, and I can't tell if that is an excuse or for real. She goes both ways, when she doesn't want to do something.

We only had about 45 minutes of swimming time before the pool closed and most of the camp kids were gone for the day. Sometimes I can just move a step at a time with Julia. It is now effective when she is rejecting an idea for no good reason, and I trust that she will reject what she really doesn't want.

So, we changed into bathing suits, brought our bag to a chair, and went in the water together. She was fine and we had fun together. She does want someone to play with -- some kid, not me. I have to see what I can do about that.

I am having a feathered Fascinator made for me and something for Julia as well for our London wedding. I can't wait to see the designs.

22 June 2010

Tuesday morning

I have lost the habit of writing since I visited Cheshire in NYC. Habits! How easy to lose, how painstaking to cultivate! For so long I have wanted to be a writer and yet this habit of writing is hard to come by and quick to leave. I am a recorded at best with a little skill at making the words human.

Julia and I have been together for more than a week now, broken only by therapists. We have taken a dinosaur almost each day and read about it and drawn it. She remembers a few facts about each one. I am charting the facts I want to work with. We will have a lot of sorting, ven work, time line, etc. work that we can do with about a dozen species. Julia tries the best that she is able to turn turn the facts into a story of mommies and eggs and families and babies. Kidnapping usually comes into play, and sometimes the eating of eggs or babies. Most of her stories, no matter how gruesome end well. Amazing how an eaten baby can be reunited with her family!

I have been reading a math book that the specialist at Randall loaned to me -- one of three. If I get through this first one, I will consider the loan well made. Called Early Numeracy, by Wright, Martland, and Stafford, it does start at the beginning. It talks about rote and rational knowledge and how to get and develop both. I am learning.

I tried this exercise with Julia. It is supposed to be done with little flash cards with dots but with Julia the learning of this sort goes so much better on the couch with a blanket over both of us and my fingers. I had her count the fingers of my one hand forwards and backwards. Backwards is still hard. There is no rote knowledge of this that has stuck (this is after three years in school during which I have seen them count together in all sorts of ways and seen Julia work one-on-one counting). Then, we play the game of naming how many fingers without counting. I use zero (a fist), one and two. We do this until she is getting is pretty quickly. I add three and we practice. We worked for about 5-8 minutes and I've held her attention the entire time. It will be interesting to see if any of it is retained today.

Julia is still very close to the edge of guarding her well of tears -- yes, a little dramatic, but I feel her almost falling off at times. She is still Julia Dinosaur (and signing all of her art with that name), but during her alone play, I hear her saying that one or the other dinosaur grows up. Something that she insists that she will never do. It is creeping in as okay. She is still talking about not wanting to be pregnant. I wish I knew what was behind these words. I feel like our time with Marilyn was a long time ago and can't wait to get back to her tomorrow. We will miss next week because of our first wedding travel. I hate to miss considering the work that we've started.

Julia is more clingy and huggy these days. She is still asking me/us to look at her, just to stare into her eyes. Her behavior some mornings seems very autistic-like -- a lot of movement of arms and her head without reason. I don't know whether her meds stop this movement or whether it is just her waking up and taking possession of the morning.

Last night, we played UNO. We have been playing often with open hands of four cards. I added #5s and also the wild cards last night. Julia had a very hard time. It was as if she was coming to us, playing with us from a very busy train station. It was incredibly hard for her to play, for her to concentrate, for her to do the next action she needed it. But the most incredible was that she did not fight, she did not refuse to play because it was hard (and it was hard, very hard), she did not even get close to a melt down or fighting. Julia struggled through the layers, the noise, the whatever stands between her desire to do what we want her to do and us. She struggled and she played. Watching her struggle and reach for what we want her to do fills my own resolve to do what I must to help her learn. Julia is growing and changing, she is adapting her goals to mine, I must do everything in my power to keep that going.

I am still waiting to hear from the LEND people. I do not expect to hear for another month or so, but I am still inpatient.

19 June 2010


Today, I've chosen the dinosaur that we will look at. An ankylosaurus is slow and plodding, a short, plant eater who does not have the glamour of a T-res or a raptor. It will be interested to see if Julia can draw him and lear a few facts about him. We may be wandering too far from the heart of her interest. I am aware that I have pledged to follow her interests and favorites, but I just cannot help but try to stretch her.

18 June 2010

Julia had a sedated MRI today as part of a neuro-physic workup. The tough part of the test of course was sedating her. We had an excellent team of nurses/nurse practitioners at UW hospital who took her step by step very slowly until they were able to insert the IV. Julia was deathly afraid of the IV and told the staff over and over how she was not going to have an iv put in today. She was pretty loopy when they finally put the IV in. She looked at it, sort of smiled, and said, "I have an IV now." She was out in another minute. We have been through some awful vacination days and blood draws (for Hep B) over the last three years, and I was sooo grateful for the team that we worked with today.
Mostly for Traci because she had commented: Thank for just being there sometimes. There are no answers, only abiding.

I don't know what happens to Julia's EIP or school services if I homeschool. Some of the reason why I can't just jump into it.

Interesting comments for me have come from her therapists. I have mentioned home schooling to our attachment therapist and to our intensive therapists, including the phychologist who oversees Julia's intensive program. All have encouraged me to do it. They see no down side. Generally, when I have mentioned it to teachers, they have discouraged me.

I do like the more relaxed Julia that I am seeing these days. And our med doc told me yesterday that he doesn't think that any of the new calmness that I am seeing since school has been out could be from the anti-depresant. He said it was much too soon to see any results. So, is it because she is home based? I am not forcing any school work, although I make her follow our rules of finishing art work, signing her art, and putting her toys away. So, her life is not completely without stress.

Right now, Julia is in the away room, looking at dinosaur pictures and videos on the web with David. She is in heaven!

17 June 2010

A wonderous and hard day yesterday. Leaping all over the place.

I had a good interview with two of the women who run the LEND program. I want the acceptance so badly I can taste it. I don’t dare let my mind wander to projects or topics. I read the descriptions of the year’s work but did not let my imagination take over at all. The interviewers asked if I would like to be placed in a group which would concentrate on autism. Yes, yes, I said and again, had to still my racing imagination. Hopefully, I will find out before we leave for England.

Yesterday’s time with Marilyn was more than exciting! Hard, sad, incredible and exciting. Marilyn pushed Julia to tear by saying that she (Marilyn) saw Julia as a girl and not a dinosaur. Julia broke down almost immediately and climbed into my arms. She sat on my lap while she concentrated on what Marilyn talked to her about. She told Marilyn how much this hurt, how much it hurt to be a girl, and how she preferred to be a dinosaur. She talked about how much she hated her face, what a bad girl she was, and how ugly her skin was when it was scaly. I remember that her docs thought that she had chicken pox before we adopted her. Julia kept my arms around her, and snuggled on my chest at time, but she attended to Marilyn closely. For almost an hour, Marilyn and Julia talked. At the end, Marilyn told Julia that it was was okay to be a dinosaur. It was very good that she was able to protect herself and keep her self safe until her Mommy could come and get her. Marilyn kept saying that Julia could choose to be a girl whenever she wanted to and that she would be safe with me and her Dad. I think that part of Julia wants to go through this process and part of her just doesn’t want to hurt.

I was amazed by how brave by girl was. It breaks my heart to hear her say that she is ugly and bad. How could anyone tell that girl things like that? I will never, ever know.

16 June 2010

The sun is shining and a breeze is blowing. Morning bike ride time. Yahoo, this is summer!

I have my LEND interview today and Julia is in a great mood. I have to wonder whether it is the ending of school or her new med -- we started her on 10 mg of prozac last Friday.

15 June 2010


Julia and Daddy are upstairs getting ready for bed. That girl talks and talks. Then, I hear: "There are ten friends and only one dinosaur Julia." That is the first time that I have ever heard Julia refer to numbers without a prompting. Ten friends! The child wants ten friends! For me this is huge. She may not be able to picture 10 friends yet, and lord knows, real friends are still a dream for her, but she said TEN!!! I feel like a little ray of light is shining on my dear child and a divine power put that word into her brain.

Yes, pretty sappy, but I've worried so much about her lack of number sense. It is almost impossible to explain a complete understanding of numbers. I have said over and over that I couldn't really wrap my brain around that, but that has been Julia.

I know she just uttered one sentence using two numbers and maybe I should not be ready to send up fireworks, but how can I not celebrate when my girl has uttered something that I wondered if she would ever understand. Ten. A number.

Sitting downstairs from the therapy room that Julia is in. Her first clinic day. Julia will have two two-hour sessions a week during which she has her own therapist but that she will be exposed to other kids around her age to socialize with. The only other kid here today is a very anxious boy. I have no idea how Julia will do with him if he wants to socialize.

I am just waiting today, but I will be able to leave the clinic during these times. Then again, the waiting space couch is really comfortable.

Again it is raining so we are inside today. Julia has 7 hours of therapy today. I am not going to try to teach her anything. We talked about how some days are just too busy to do dinosaur work. She asked me if she can still draw dinosaurs -- like she would refrain from drawing if I said no. LOL.

While we were watching a National Geographic show last night called Dinosaur Hunters. It was about a pair of guys on a dig in the Gobi desert. This was so cool because we were talking about Mongolia as it is where T-rex bones are found. Ovaraptor bones have been found there as well. The paleontologists found multiple ovaraptor skeletons and a nest with at least a dozen eggs in it.

Julia set to work and drew an overaptor couple with a nest. The eggs in the next are beginning to crack open and she drew little babies inside. She has not colored the picture yet and I am pushing her to because of the colors that she has been using. I want to see this family in color!

Morgan, one of our therapists, told me yesterday that Julia was insisting on being Julia T-rex or Julia dinosaur with her. Julia told Morgan that she (Julia) is not a girl, is ugly as a girl, and has a bad face. I told Morgan what we say. This is so incredibly sad to hear from Julia, no matter how many times I hear it. Could she be any prettier? How did anyone ever convince her that she was not perfectly lovely and wonderful? It is times like this when I really hate the people who hurt her so. It continues to be very hard for me to forgive people who hurt children.

As we drove to clinic today, Julia talked about playing with her clinic therapist who came to our house last week to meet Julia. When I told her that there would be other kids there, Julia decided not to play with the other kids today. I wonder if she will hold to that. When I asked her if she was shy or nervous about meeting other kids, she told me no. When I asked is she was scared, she said no. But she was. When we were out of the car and standing in front of the desk at IDS, I told Cortney that Julia was a little nervous, and Julia yanked at my hand and told me that she was okay and happy. “Look at my smiling face.” And I wondered if I should have revealed this “secret” of being scared or let her fake a brave happy face. If it was another child, I would not have mentioned it. I would have assumed that it was probably good for her to learn to put on a mask to make it through new situations. But is that good for Julia?

14 June 2010


Oh my goodness, how to begin. How to make the school experience with me better and more cooperative than her teachers at school have managed. I am determined not to force her, not to have to make her sit down and attend. How?

We have time today to ease into everything. We went to speech therapy at 8. When we get home, Julia wants to draw cats -- trace and add -- and she spends about 45 minutes working on one pictures of two cats. I ask her to sign and date the picture. She balked about this on Saturday, but today she complies. I told her the artists sign and date their work. We have plenty of pictures on the wall that are signed and dated to attest to this custom.

Then I get out the dinosaurs. We started with the T-rex on Saturday and instead of spending days on one dinosaur, I decided to introduce a dino a day for awhile until we get enough to sort them, add them, and find similarities and differences. But none of that is for today.

I show her the sheets I've printed out on the dilophosaurus. I start going over the sheet with her but she is not interested in the information. I ask her if she wants to draw a dilophosaurus and she agrees. I notice in her drawing that she is giving the dinosaur the right number of claws (including dew claws on their feet). She was listening.

Maybe some computer work? Help my homeschooling friends!

As the day progressed, Julia had a few hours of therapy and then we went to the library and met Daddy for dinner. Whenever she could, Julia sat down to draw. There is a lovely dino whose name Julia knows but not me, in the writing notebook I carry around. She is coloring in more than one color and using shading and something that look like feathers. At home, she is drawing a ovaraptor egg with embryo inside and a mama ovaraptor. Before bed we watch a a national geographic film called dinosaur hunters. Julia is not bored in the least.

13 June 2010

The last days of Franklin School for Julia

The day before school closed there was a moving on ceremony. Julia sat with her class the entire time and was quiet and acted appropriately. This is Beth who was Julia's teacher during second grade. Beth is the lead teacher so did not deal one-on-one with Julia all that much, but Julia has a great relationship with Beth. She knows that Beth is interested in what she will say, and seeks Beth out to tell her exciting things.
Friday, just before 9:15, and Cathy, our principal took to the steps and laughed at all of the parents lined up with cameras.
And then, the bell rang.
Julia was quite reluctant to leave the building. Funny how often she told me that she did not want to go to school. Just look at that face!
Julia stands with Sheila who has been her aide all year and some of last year. Sheila knows Julia as well as I do and takes care of her so well. Sheila will not be working next year and is planning to volunteer in Julia's new classroom to help her transition to Randall School.
And this is Ginny, Franklin's special ed teacher. She has done so much for Julia and Julia is going to really miss her.

Mary was Julia's aide last year. She is a retired teacher and has an incredible hearts for kids who have challenges. Her assignment this year was the other kid in Julia's class who is also on the spectrum. I really hope we can keep in touch.
The last bus pulled away from the curb. Teachers waved and blew bubbles. Then it was time for summer!

12 June 2010

shaggy dog

When I came home from NYC, this shaggy dog who is erasing a chalk board greeted me on the erase board. I love him! And I think that this is Julia's first furry, shaggy creature.

Cheshire's class

When I was in NYC, I spent the day in the school that Cheshire's teaches. That day there was a dance recital. Each class performed a song in movement and some dance. The kids loved doing it, and although the amount of dance they learned was pretty scant, they made the most of what they did.

Cheshire, these are some pictures for you.

Dinosaurs have pets.

This morning Julia's microraptor has a stripped pig on its wing and her spinosaurus carries a little duck perched on her front claws.

11 June 2010

Fancy dress alert

Attention mommy friends: We have three weddings to go to from now until September. I wanted to buy Julia a fancy dress but we tried on some and she said she would rather wear her "fancy" school tee shirt and a skirt. I need a smashing dress for this kid that is soft, easy to wear, and beautiful. And that goes with sneakers. Help!

Cheshire's comment was that when we were in China, Julia would have loved those dresses and I think she is right. I have to dig out an old dress of Cheshire's that might work -- worn to an anniversary party for my parents when Ches was about 9.

I, on the other hand, stopped in a store that I have been eying, tried on 6 dresses and found one for the weddings. Losing a few more pounds will only make it look better. I bought a little jacket with it. Pretty wild, not at all traditional. I love it. Now, to find the hat for Alice's London wedding.

10 June 2010

At Franklin School today, they did the moving on ceremony. All of the kids in the school assemble to sing some Franklin school songs, cheer themselves for finishing the year, and watch a long photo show of themselves. Julia must have gone to this assembly when she was a kindergartner but I did not know about it to go and see it myself. Last year, Julia and I were in New Jersey after my mother's death, and so this was my first and only chance to see the moving on ceremony. It was sweet and lovely. Julia managed to sit with her class for the entire time and I think she sang a few of the songs. Generally, Julia wants to stay with her group more often. Wanting to be included is good for her.

I loved watching the kids and the photo show, but it did sadden me. So many pictures of kids being together. Arms thrown around necks, playing together, big smiles. It will be years before Julia is in these pictures. I remember that there would have been very few pictures of second grade Suzanne with arms around some friend but looking back, I know that my painful shyness resolved by the middle teen years. Julia's challenges are much more serious than shyness, but I still hope that she too has friends for high school.

The play room wall is painted. Tomorrow we start decorating for dinosaur summer. I am aiming for lots of fun. I so hope that Julia thinks so.

My reference for the LEND program was emailed in yesterday and today, there was an email for me asking for an interview. I gave them some dates and times and hopefully, I will talk to someone next week. Oh, it would be so great to be in that program!

One the cusp of dinosaur days

So today is Thursday -- Sumer vacation minus 2 -- and I haven't written all week. Today, is Julia's "moving on" ceremony, as her class moves from second to third grade, from Franklin School (K-2) to Randall (3-5). All the same kids, we consider the two schools one grammar school, but a change of buildings and a change from the little kids to the big kids. I have no idea of what she understands of the move, except she is happy to think that she has only two more days of school until vacation.

"I never going back to school."

We let her say it to avert a fight and wonder if there will be a fight in September.

I am painting one wall of our toy room/den/computer room. It will be the display wall and the work wall of our dinosaur summer. I am pumped to get down to studying dinosaurs.

08 June 2010

Sunday 5 June 2010

5 June 2010

Internet trouble in Brooklyn. I am having trouble connecting and then trouble staying connected. So all of these entries will appear together. Damn, I love the daily dairy.

So . . . . .

Enough Mind.

This came to me as I woke up -- late again, so nice. I had a chant that went like, “Left brain, right brain, theory of mind, How much is enough mind?” Yeah, I know, I am not becoming a poet, but as I was passionately talking last night to Jan and Jen about Julia’s education, some seed was sprouting. Cheshire asked, why I didn’t just find a more appropriate school for next year and not wait another year. -- Sad to say, but my answer was about the PTO, more than Julia. Again ego and some responsibility I feel, but isn’t that a lame excuse. If I find something more appropriate, we should change asap. If there is nothing more appropriate then and if I can train myself sufficiently to take on home school, we should start when the time of sufficiency comes, not at the end of another less than useful school year.

I have been going around saying that I was going to teach Julia about dinosaurs to give her some passion for learning. And I knew we could do dino worksheets, look up facts on the computer and copy them, color, draw, and generally make dinosaurs, but I didn’t know how I was going to connect them to school learning. I have been struggling with how to teach letter sounds/vowels & consonants & blends/syllables/ pronunciation. Well, there are a whole bunch of unpronounceable dinosaur names out there. What a perfect way to to teach it all. I can add that to my list of methods.

I don’t know if anything I want to do will work. I am not a teacher. I have no training. And I don’t know if Julia can learn. Learn anything non-creative. But I still see myself moving ahead as if all was possible. Is this just being the mother of a challenged child?

Slowly, I am getting used to the NYC heat. First, appalling and an assault to the body. Then, just bearing it and hoping that the next place we enter is air conditioned. Finally, just taking it on.

Great brunch, supposed to be on a bagel but the shipment had not arrived yet, so on a brioche. Cream cheese, pesto, sauteed, caramelized onions, and thick slices of tomato. I write it here so I remember it. I have to make it at home.

Saturday 4 June 2010

Too much of NYC. I was there Thursday through Monday and my internet connection was not good at all. I wrote two entries that I will post now.

4 June 2010

Two days away from WI and in the middle of hot, steamy Brooklyn with the dearest person in the world and my mind is cleared. Thank you, David! I needed a break. NYC is intense. Of course, it is. Cheshire is intense. Ditto. But the energy around us is once again alien to me. How can I say it without sounding New Wavy weird -- I am at home here, I am very new here. The underling rhythm of the place changes my clock back to a very recognizable time. Like hearing a waltz for the first time and physically knowing that the tempo of 3 is your heart beat. Madison is a wonderful place, and the first place that I have loved since NYC, but like a second love, it suffers, if just a little bit, by the glow of first love.

Two days and I remember and I shake myself awake. I see better from a distance.

Julia was sick yesterday with a fever, and probably an ear ache. David had to stay home with her which was not what he had planned. I had moments of guilt. She has not been sick at all this year -- maybe one day in the winter. David is not used to spending days with purpose with her.

I am sure they did fine and that Julia had a wonderful time with Daddy. Her favorite!

Julia's class did a play on Wednesday and Thursday. It was then that I posted on Facebook that it was tough to have a child different from every other. But, ya know, it is so not about me. She did so well, taking a great step forward by staying on the riser and in her position, albeit sitting, and even singing a few words of her flower song. She did not look at the audience, but sat picking a scab on her leg. Ok, do I paint too sad a picture. Can I announce being proud of such behavior? But before this she has not even been willing to be with the rest of the class. For her play her was. She came off the stage and walked down the aisle like everyone else. She beamed at me, like she had been the star of the show who had performed brilliantly. I stopped her and kissed her and told her what a good job she had done. And I meant it from my bottom of this heart.

I spent yesterday, Friday, in Cheshire's first grade classroom. She has 24 kids and could so use an aide in the class with her. She cannot stop and attend to one child, one emergency, one message over the phone, without loosing some control of the entire group. There are a lot of control issues buzzing around the class, there is one little boy afraid of life, a few girls who are 6 going on 25, no 30, and all sorts of attention getting behaviors. I am not sure how Cheshire does it. Having a year of teaching experience under your belt does not qualify anyone to do the best by anyone.

But watching these kids, who have not come from educationally rich homes (and that of course, is a grow generalization. Some of her students are quite evidently loved, cherished, and taught at home), and still in first grade they have learned to read and write, they can write sentences, they can add and subtract a little bit, some are thinking about multipication. When Cheshire says, do pages 99-104 in the math review book, they take out the book and do it. "How did you teach them that?" I ask. And I have an ah-ha moment about the reason to teach autistic children something that they are passionate about. Maybe, just maybe, tapping into a passion is about as close to normal brain work as Julia can get. Yes, I go from general to specific, but then everything I think about now regarding education is about Julia, is specific.

I see how behind she is when I look at this bunch of ragged Brooklyn kids, but, I tell Cheshire, that behavior-wise, she could disappear into this first grade class.


End of Saturday

It is the end of Saturday. Today, Cheshire and I slept in a bit after a very late night. Ah, to come home a two in the morning and not have to be scraped up and put in bed. We went to the Great Jones Spa -- I had a hot stone massage and then the two of us hung out in the water room. There were water falls, a very active hot tub, a very cold plunge, and a sauna that I could not bear to be in for more than a few minutes. There were also relaxing chairs and chaises and groups of women of various sizes, celebrating and talking. All very friendly. Very informal. Something that we should all be assigned to at least once every two weeks -- maybe more.

We walked some of Union Square and then a wee bit of Park Slope and then had a late super with friends. In all, such a relaxing day. I have to take David to a spa like this somewhere closer to home.

At home, David said all was well.

01 June 2010

Inspiring Julia

I told Julia that we were going to study dinosaurs during this summer. I don't know if she really understood but she was happy. Now to figure out what that means. I looked for the WI educational standards to see what expectation are for K, first and second grade. Then, it dawned on me that I don't want to set goals based on how many words she can read or what kind of addition she can do. Rather, I want to see Julia working happily and with excitement. How to do this? How to do this? How to do this?