I was thinking last night about the heart that David will get. We don't know when it will come but right now it is being used by someone inside whose body it has grown and thrived for years. Whether it is next week or in 3 months, there is someone walking around with what will be David's new heart, and he or she is living their life. That life will end soon. They are kissing their wife, child, grandfather, brother, lover for a last time. They are dancing or drilling or shoveling snow or driving much too fast for the last time. They are eating their favorite food or stopping at a fast food restaurant just to get ride of their hunger. They are watching French movies or football games. They are planning their future.
We will never know them -- him or her. But we will get to know their heart intimately. I do not wish their death, but I want their heart for David. Such confusing emotions to process and carry around day to day.
31 January 2010
30 January 2010
Autism conference & art
Today, I am at a madison conference sponsored by the Waisman Center that the Autism Society of Madison. It is a day with the experts with speakers who can not speak long enough for me, two panels, and a whole room full of people who are interested in learning more about kids on the spectrum. A straw pole of the audience indicated that there are mostly parents here. Mostly parents becoming professional parents with closet degrees in the autism spectrum.
I spoke to a woman after I asked a question about training peers to play with or in play groups. Her son is 5 and on the spectrum. She has made the transition from a regular teacher to an autism specialist -- Could I begin that process? -- working with preschool kids during which she runs a playgroup for little ones. She advised using using slightly older kids as peers and/or training the children in having more patience with their novice player, suggesting the same thing more than once, and then also finding the novice player's lead. We had no thought of somehow training/preparing the NT kids but this is a good idea if we can figure out how to do it.
She told me to know what goes on in school – and I told her that I was the PTO president. She laughed and high fived me.
Listening to the experts is incredible and I just want to know and work with kids with ASD more. There is so much more for me to learn. So many things that have been said apply to Julia or to the other kids that were in our play group last year. So many of the therapy programs or studies are practical, things that parents do with their kids all the time, things that we did with Cheshire, but with kids on the spectrum, those things have to be done over and over, done in other ways, done over and over. And done over and over. To teach the basics, what Julia is learning slowly from her line therapists.
Research shows that parents of children with ASD report higher levels of stress than parents of children with other disabilities including, Downs Syndrome, Fragile X syndrome, CP, and development delays.
Wow. And stress is never good.
Last night, I was cleaning out Julia's backpack which came home with a report card (with somewhat encouraging things on it) and lots of papers. I pulled out her weekend update notebook and Julia wanted it. She obviously liked everything she did in that book, and had Stephanie -- her therapist at that moment -- read what she had written. It was quite a challenge for Stephanie but Julia helped her with those words. Interestingly, Julia remembered what she had written and the rather mangled words that Julia wrote made sense to her and to Stephanie after Julia explained them.
After Stephanie left, Julia found some blank pages and started drawing. On one page she drew a tree with grass around it, a mountain, and an animal (I can't remember what right now). The tree was a leap forward in Julia drawing – Green and brown, a trunk with three big branches, two colors of green for the leaves, and heavy green but some single blades for the grass. The mountain was in red – vaguely in the background. Looking very much like she wanted to put it in the background but didn't quite get it yet. She has been drawing mountains this last week. And the Great Wall of China. I think it is inspired by watching Mulan for the first time in a long time and the opening credits which is really beautifully painted. She has been drawing mountains all week and I think that last night was the first time she put it into a scene. Julia doesn't know where to put people or things on the mountains and so for now people are too big for those mountains. I am sure she will practice this until she figures it out.
On the other page, Julia drew an ocean with three cat fish and underwater plants. It looked like a page sized fish bowl. On the top she drew a rough oval that looks like water or waves and the front and back of a tank. There are a few “cat” fish which in the style of Suess look like cats with fish tales. But then there are the sea plants. The sea plants are amazing. The leaves which are broad wavy leaves – two or three to a plant are colored a deep green with brown outline. The plant base is an oval hills each which was colored deeply – red and green – and each mound his dots of darker colors. Julia clearly got into developing those plants and they are intensely beautiful.
Julia had a good day in school yesterday. Her behavior chart had all smiles and she was very happy to be proud of what she did. When I asked her after school how the day had been she did more than answer yes or no. A lot of her answers are a review of what she had been told -- “I am staying calm,” “I am calm now.” “I worked hard.” I did a good job.” “I read two books.” Although I need to prompt Julia with questions to get some of these answers, she is more willing to share this information. We are not at fll after school conversation but we are so much further along than we were last year. And Julia does not tell me not to talk to her as much as she used to do.
I spoke to a woman after I asked a question about training peers to play with or in play groups. Her son is 5 and on the spectrum. She has made the transition from a regular teacher to an autism specialist -- Could I begin that process? -- working with preschool kids during which she runs a playgroup for little ones. She advised using using slightly older kids as peers and/or training the children in having more patience with their novice player, suggesting the same thing more than once, and then also finding the novice player's lead. We had no thought of somehow training/preparing the NT kids but this is a good idea if we can figure out how to do it.
She told me to know what goes on in school – and I told her that I was the PTO president. She laughed and high fived me.
Listening to the experts is incredible and I just want to know and work with kids with ASD more. There is so much more for me to learn. So many things that have been said apply to Julia or to the other kids that were in our play group last year. So many of the therapy programs or studies are practical, things that parents do with their kids all the time, things that we did with Cheshire, but with kids on the spectrum, those things have to be done over and over, done in other ways, done over and over. And done over and over. To teach the basics, what Julia is learning slowly from her line therapists.
Research shows that parents of children with ASD report higher levels of stress than parents of children with other disabilities including, Downs Syndrome, Fragile X syndrome, CP, and development delays.
Wow. And stress is never good.
Last night, I was cleaning out Julia's backpack which came home with a report card (with somewhat encouraging things on it) and lots of papers. I pulled out her weekend update notebook and Julia wanted it. She obviously liked everything she did in that book, and had Stephanie -- her therapist at that moment -- read what she had written. It was quite a challenge for Stephanie but Julia helped her with those words. Interestingly, Julia remembered what she had written and the rather mangled words that Julia wrote made sense to her and to Stephanie after Julia explained them.
After Stephanie left, Julia found some blank pages and started drawing. On one page she drew a tree with grass around it, a mountain, and an animal (I can't remember what right now). The tree was a leap forward in Julia drawing – Green and brown, a trunk with three big branches, two colors of green for the leaves, and heavy green but some single blades for the grass. The mountain was in red – vaguely in the background. Looking very much like she wanted to put it in the background but didn't quite get it yet. She has been drawing mountains this last week. And the Great Wall of China. I think it is inspired by watching Mulan for the first time in a long time and the opening credits which is really beautifully painted. She has been drawing mountains all week and I think that last night was the first time she put it into a scene. Julia doesn't know where to put people or things on the mountains and so for now people are too big for those mountains. I am sure she will practice this until she figures it out.
On the other page, Julia drew an ocean with three cat fish and underwater plants. It looked like a page sized fish bowl. On the top she drew a rough oval that looks like water or waves and the front and back of a tank. There are a few “cat” fish which in the style of Suess look like cats with fish tales. But then there are the sea plants. The sea plants are amazing. The leaves which are broad wavy leaves – two or three to a plant are colored a deep green with brown outline. The plant base is an oval hills each which was colored deeply – red and green – and each mound his dots of darker colors. Julia clearly got into developing those plants and they are intensely beautiful.
Julia had a good day in school yesterday. Her behavior chart had all smiles and she was very happy to be proud of what she did. When I asked her after school how the day had been she did more than answer yes or no. A lot of her answers are a review of what she had been told -- “I am staying calm,” “I am calm now.” “I worked hard.” I did a good job.” “I read two books.” Although I need to prompt Julia with questions to get some of these answers, she is more willing to share this information. We are not at fll after school conversation but we are so much further along than we were last year. And Julia does not tell me not to talk to her as much as she used to do.
28 January 2010
Started on Thursday; continued on Friday
I talked to another architect today -- someone who I was predisposed not to like because we did not hit it off on the phone. He was very impressive. He looked at the whole house and not just the floor that was going to be renovated. He had a radically different idea about putting in a bathroom which may or may not work but it was something that I had not considered. I liked that. I have one more to see, probably next week. Then a decision. I am not eager to make the decision but I am excited to start the design phase of the first floor.
This planning, looking, shopping, researching for the renovation of the first floor is, right now, my diversion. The way I stay sane.
Friday, I am talking to the designer at a design/build firm. I like the firm and I like the guys I have met. They are, however, expensive.
Budget, budget, budget. And so much better to worry about than where and when that heart is coming. The waiting is getting to me today -- yeah, like it is isn't always on my mind. I am not David and I do not wear the little pump 24/7 and so, I am able to forget for seconds and minutes.
I am very cranky today. Because, because, because of the wait which is wearing like the winter right now. It feels like we have had enough snow and cold weather and yet I know we have months to go. Please, not months for the heart!
Last night with no therapist at the house, Julia and I worked for over an hour of reading and words. She is finding many of the pages of our kindergarten work book pretty easy. I might be able to more her up to a first grade reading work book when we finish this one. She is also enjoying the Leapster Kindergarten now, and one activity moved her up to the second level. After dinner, we played Kerplunk (sp??) in reverse -- who got the most aliens to fall from the space ship. Julia picked the game, she took turns, and she didn't shake the space ship so all the aliens fell at one. Little steps, but none of that would have been fun last year.
I am walking on egg shells this morning -- waiting for another call about Julia's behavior. Maybe it will not come today. Maybe, maybe . . .
This planning, looking, shopping, researching for the renovation of the first floor is, right now, my diversion. The way I stay sane.
Friday, I am talking to the designer at a design/build firm. I like the firm and I like the guys I have met. They are, however, expensive.
Budget, budget, budget. And so much better to worry about than where and when that heart is coming. The waiting is getting to me today -- yeah, like it is isn't always on my mind. I am not David and I do not wear the little pump 24/7 and so, I am able to forget for seconds and minutes.
I am very cranky today. Because, because, because of the wait which is wearing like the winter right now. It feels like we have had enough snow and cold weather and yet I know we have months to go. Please, not months for the heart!
Last night with no therapist at the house, Julia and I worked for over an hour of reading and words. She is finding many of the pages of our kindergarten work book pretty easy. I might be able to more her up to a first grade reading work book when we finish this one. She is also enjoying the Leapster Kindergarten now, and one activity moved her up to the second level. After dinner, we played Kerplunk (sp??) in reverse -- who got the most aliens to fall from the space ship. Julia picked the game, she took turns, and she didn't shake the space ship so all the aliens fell at one. Little steps, but none of that would have been fun last year.
I am walking on egg shells this morning -- waiting for another call about Julia's behavior. Maybe it will not come today. Maybe, maybe . . .
Meltdowns
Two tantrums/melt downs this morning. That was the report on the the phone. Two bad, had to restrain her to keep her from hurting herself, the teachers, and the school property meltdowns. Two within an hour where Julia was out of control.
Completely.
No amount of mother guilt, or school expertise to help this.
Meds? Rigidity? Anxiousness? We are not seeing this at home.
And I am stymied.
Completely.
No amount of mother guilt, or school expertise to help this.
Meds? Rigidity? Anxiousness? We are not seeing this at home.
And I am stymied.
27 January 2010
Julia had a bad tantrum in school yesterday. She is more articulate when she talks about her behavior now and we were able to talk about what went on. She says she is scared but when we talk further, she is really anxious about her work. I am not sure why, and since why is the tough question for Julia to answer, I don't really expect a cogent response. She says the work is too hard, but it is work she has done before (writing out her words of the week, cutting them out and pasting them on another sheet of paper) and done well. She does not like to do the work and so I wonder if it is that she does not want to make the effort to do the work or if on some level she does not understand what is being asked of her. Can we work at the cause in this case? Can we find the cause?
I am wondering about anxiety. She was having trouble getting into the school building because of all the noisy locket noise and we have solved that by having her get in early and settled to work before other kids come in. Now, it is getting the work started. Is it the same anxiety transferred to another thing? Or is it something different?
Julia and I have done some tapping before, but I want to put us on a regular diet of doing it a few times a day. Another thing that I have a hard time finding time to do, but I keep running into people who have used it and who recommend it.
Another thing that I discussed with Ginny this morning during school drop off (which now takes about 20 minutes of settling Julia into her classroom before the other kids come in off the playground) was Julia's world of fantasy. I see that when she get afraid or anxious, she goes more into her fantasy world, but she also goes into it for fun or whenever she is bored. It is her escape place. I ask her to be present sometimes and Ginny does this at school too. How much of her fantasy world she we take away? Is she ready to abandon it and if not, should we be letting her indulge in fantasy until she is ready to leave? On the other hand, is she so used to that world that she is stuck there?
Tapping script 1:
Even though I am anxious and worried, I am learning to calm myself down.
Even though I am anxious and worried, I am a smart girl who can do my school work.
Even though I am anxious and worried, I can do all the work my teachers tell me to do.
I have to ask more questions about this.
More later.
I am wondering about anxiety. She was having trouble getting into the school building because of all the noisy locket noise and we have solved that by having her get in early and settled to work before other kids come in. Now, it is getting the work started. Is it the same anxiety transferred to another thing? Or is it something different?
Julia and I have done some tapping before, but I want to put us on a regular diet of doing it a few times a day. Another thing that I have a hard time finding time to do, but I keep running into people who have used it and who recommend it.
Another thing that I discussed with Ginny this morning during school drop off (which now takes about 20 minutes of settling Julia into her classroom before the other kids come in off the playground) was Julia's world of fantasy. I see that when she get afraid or anxious, she goes more into her fantasy world, but she also goes into it for fun or whenever she is bored. It is her escape place. I ask her to be present sometimes and Ginny does this at school too. How much of her fantasy world she we take away? Is she ready to abandon it and if not, should we be letting her indulge in fantasy until she is ready to leave? On the other hand, is she so used to that world that she is stuck there?
Tapping script 1:
Even though I am anxious and worried, I am learning to calm myself down.
Even though I am anxious and worried, I am a smart girl who can do my school work.
Even though I am anxious and worried, I can do all the work my teachers tell me to do.
I have to ask more questions about this.
More later.
25 January 2010
How are you doing?
For the first time tonight, Julia asked me how I was feeling.
Wow.
We -- we being David and I and our legion of therapists -- have been working for a long time on conversations with Julia. We can now ask Julia questions and except for the question "Why" she will usually answer. Julia can start talking about something that interests her, usually dinosaurs, and we can ask questions about that topic and she will answer. We can usually ask follow up questions as well. But Julia doesn't ask questions about other people. She will ask practical things -- like when is dinner, or when are we going home -- or fantastical things -- like why can't T-Rexes fly? or Does Julia Squirrel eat bugs? -- but having a conversation where say, I ask about her day and she asks about mine never happens. She does occasionally ask about where Daddy is when he is at work or away from us. But this does not start a conversation, she only wants the answer so that she can move on to the next activity or thing of interest.
Now, I know she is a kid and I know kid conversation, but having kid conversations is one of the things that I do really miss. I have them with other kids at her school, I remember them from Cheshire and the other kids I've known. Talking "with" Julia is like talking to a kid with Aspergers syndrome. She rambles on talking about her interests and expecting that her listeners will do just that.
So tonight when she was finished with therapy and I came downstairs to hang out with her and she asked me how I was doing, I answered that I was fine and asked her how she was. She game me her answer for for a split second, I did not realize that something special had just occurred.
And then, I did.
Wow.
We -- we being David and I and our legion of therapists -- have been working for a long time on conversations with Julia. We can now ask Julia questions and except for the question "Why" she will usually answer. Julia can start talking about something that interests her, usually dinosaurs, and we can ask questions about that topic and she will answer. We can usually ask follow up questions as well. But Julia doesn't ask questions about other people. She will ask practical things -- like when is dinner, or when are we going home -- or fantastical things -- like why can't T-Rexes fly? or Does Julia Squirrel eat bugs? -- but having a conversation where say, I ask about her day and she asks about mine never happens. She does occasionally ask about where Daddy is when he is at work or away from us. But this does not start a conversation, she only wants the answer so that she can move on to the next activity or thing of interest.
Now, I know she is a kid and I know kid conversation, but having kid conversations is one of the things that I do really miss. I have them with other kids at her school, I remember them from Cheshire and the other kids I've known. Talking "with" Julia is like talking to a kid with Aspergers syndrome. She rambles on talking about her interests and expecting that her listeners will do just that.
So tonight when she was finished with therapy and I came downstairs to hang out with her and she asked me how I was doing, I answered that I was fine and asked her how she was. She game me her answer for for a split second, I did not realize that something special had just occurred.
And then, I did.
24 January 2010
Sunday
Julia is sitting beside me playing with her Leapster -- all on her own. She chose to do it after we ate supper. This was what I had in mind when I bought it. Yahoo! Of course, I might regret this happy announcement when I have to pry her fingers off some Internet game when she is 14 but for now she is out of her make believe world of dinosaurs and doing something that is on the road to age appropriate behavior.
The kid has been pretty good this weekend. I attribute some of her behavior to her fish oil which is back in her system. This week we are increasing her dosage from 600 mg to 1g and next week to 2g. I am hoping that the fish oil will be so effective with her mood that we will not need another med like the guanfacine to keep her mellow. Actually, even if the increased dose doesn't make a difference, I think she will need less guanfacine than she was taking when she was on that med.
Julia had 6 hours of therapy today with 2 therapists and did a great time being cooperative and generous. She is beginning to follow directions more reliably and she did a craft that was a birthday present from one of her friends. Julia played a game with each therapist and I heard her say that she loved the caterpillar game that was really hard for her last week.
Last night, we went to a new Italian restaurant and had some lovely food -- intense cheese and mini ravioli with a walnut sauce. Julia ate her pizza with real delight. It was very good made with tomatoes and fresh mozzarella and cooked in a very hot oven. She stuffed her purple backpack with stuff to do at the restaurant and was extremely well behaved. I do love taking her with us when we go out and not leaving her with a sitter. We did that with Cheshire. I saw some people that I know at the restaurant who stopped to give me birthday wishes. It felt like home; it felt like we belong here now.
And after months of asking Julia to look at us when we talk to each other, she is making much more eye contact, especially when she has something to say to us.
The kid has been pretty good this weekend. I attribute some of her behavior to her fish oil which is back in her system. This week we are increasing her dosage from 600 mg to 1g and next week to 2g. I am hoping that the fish oil will be so effective with her mood that we will not need another med like the guanfacine to keep her mellow. Actually, even if the increased dose doesn't make a difference, I think she will need less guanfacine than she was taking when she was on that med.
Julia had 6 hours of therapy today with 2 therapists and did a great time being cooperative and generous. She is beginning to follow directions more reliably and she did a craft that was a birthday present from one of her friends. Julia played a game with each therapist and I heard her say that she loved the caterpillar game that was really hard for her last week.
Last night, we went to a new Italian restaurant and had some lovely food -- intense cheese and mini ravioli with a walnut sauce. Julia ate her pizza with real delight. It was very good made with tomatoes and fresh mozzarella and cooked in a very hot oven. She stuffed her purple backpack with stuff to do at the restaurant and was extremely well behaved. I do love taking her with us when we go out and not leaving her with a sitter. We did that with Cheshire. I saw some people that I know at the restaurant who stopped to give me birthday wishes. It felt like home; it felt like we belong here now.
And after months of asking Julia to look at us when we talk to each other, she is making much more eye contact, especially when she has something to say to us.
23 January 2010
Wow. The day began in a wonderful way. I woke up not thinking about my birthday, but about how I could spend the morning -- getting in touch with people interested in our play group, writing a letter for the PTO newsletter next week about how we can implement our vision for our community, and revising the organization of Julia's toys, games and craft material. Very exciting!
22 January 2010
Julia's 9th birthday
I was going to scrap a bunch of pictures and put them on the blog and I still might do that but no time soon. So just going to get some pictures up. Above is the store bought cake with a few added decorations. Julia really liked the Tink candle -- it may be on my birthday cake this weekend of Julia gets her way.
Julia did the loveliest thing after we all sang happy birthday to her. She blew out the big Tinker Bell candle and then she invited all of her friends to blow out the rest of the candles with her. I remember that when she first came home, she really couldn't blow out candles -- didn't know how and didn't have the lung strength -- so we might have all blown out candles but surely she has done it herself since that time. Whatever she asked her friends to help and to make wishes with her.
Julia really liked opening presents but she was gentle doing it was was very sweet to Fiona -- the younger sister of one of Julia's classmates -- who had a great time invading Julia's space.
These are the party girls! What I really love about this picture is that it reminds me so much of out red courch pictures when Julia and her China sisters get together. The original red couch picture is taken in China on one of the red couches at the White Swan Hotel. There are some lovely red couch pictures but ours, like many, many others was full of crying babies, squirming babies, and kids not looking at any of the dozen cameras flashing at them. And here we are, the same kid of picture -- albeit not with crying babies -- of our party girls. 
This is one of the games that we bought her. The girls all loved this one and almost as soon as it was opened, it was played! Julia was very impressed that her friends liked the game -- I think it was a real boost to playing the game when friends are not here.
My beautiful birthday girl with her Chinese hair, her favorite hair ribbons, and a star crown with ribbons. What fun.
After te party, Julia and I visited David and opened her last three presents. We shared the last bit of Julia's birthday cake and left on of the presents in the hospital to play with when next Julia came to visit.
At the end of the day, Julia hung her crown and ribbons on a hook in the bathroom and settled into a soft warm bed. It was a good birthday. Friday
Thanks for all the good wishes and prayers that are coming our way. I feel the breeze of them as we step off another cliff waiting for the angels to bear us up. I love that image because of the trust and craziness involved. I have never found it easy to step off those cliffs of life's challenges but I get better all the time. When we were in Costa Rica (greatest vacation we ever took! and incredibly great for kids! Can't wait to bring Julia there.), we explored the top of rain forest by taking zip lines from platform to platform. Many, many feet off the ground and armed with all sorts of protective equipment, we had to willingly let go and jump. The first zip line was excruciatingly scary -- complete horror, and my body remembers the fear and then the decision to let go of that fear. Maybe it was the ultimate in the moment living. Letting go completely of the fear opened the delights of the rain forest, the view that only birds have, and something so pure, so light. Pura vita. They say in Costa Rica. My body remembers that as well.
Okay, that was just a ramble. Maybe somehow related to life today but I have to leave it until later to figure out the connection.
David is home -- went to work yesterday and intends to go today after he gets a blood draw. His "numbers" are not the best and they may want him back in the hospital. I am encouraging him not to fight that decision if that is the decision, but truth is that he feels pretty good. Relatively speaking, that is, and the hospital is incredibly boring. I compare it to pregnant women who are told to go on bed rest -- boring, yes, ultimately the right decision, YES! The medication he is on right now is giving him much better blood pressure, but it is also dangerous. It can cause serious arrhythmia and the chance of arrhythmia increases over time. His only other option is to have a left ventricular assist device (LVAD) which means at least two open heart surgeries -- one of insert the LVAD and another to take it out and put in the new heart. We are hoping to avoid that.
Julia had a hard day yesterday -- not very well behaved at school. We had an appointment with Marilyn and then went home and did not have therapy. (Marilyn is making a big effort to talk to Julia during our therapy and Julia is slowly responding. They had a conversation of sorts -- Marilyn asking questions and Julia sort of responding. They talked about Julia playing pretend and pretending to be animals all the time. The conversation got down to Julia saying that she was scared to be a little girl when she played -- and this was not an answer to a question but a very clear statement made by Julia. Julia prefers to be an animal -- squirrels these day.) Julia played while the home nurse was at our house and then watched tv with David while I did a bit of grocery shopping. I started dinner when I returned and when I asked Julia to set the table, she had a melt down. I would say that this meltdown had the feeling of coming all week.
I put her in time out on the stairs. She ranted and raved there -- she doesn't like me to control her so blatently and completely and will usually do almost anything to avoid sitting on that step. I usually let her leave time out when she has calmed down and is ready to apologize and do what needs to be done. Yesterday, she left time out to come into the kitchen and tell me how much she didn't like being in time out and she didn't like me.
That was when I lost it and walked her upstairs to her bedroom to finish some time out and calming down time. This is the first time she has had time out away from us and oh, she was angry. She did not let us forget that she was upstairs suffering, and she did stomp for a little while. But the surprising thing to me was that she spent most of the time calling down to us to tell us what she was thinking of doing -- somewhat short of threats but definitely she would have liked some harm to come to me. She did calm down and came down stairs. Then she was all appologies and wanting to please. I had made one of her favorite noodle dishes and she ate a lot of it, telling me that she loved it and generally trying to make it up to me.
We need to do more regulation -- trampoline jumping, taking the dog on walks and swimming -- to keep her in a good place.
This morning there was a school concert with all the kids singing. There were two performances with the gym jammed at the one we were at. I expect the earlier one was as crowded. Julia spent the concert very happily on my lap -- I don't think we have a performer in this one.
I realized much too late that I should have taken the opportunity to saw a few PTO words to the assembled group. Even just one of those assembled crowds is the largest Franklin School commuity get together. I did not have the nerve to do such a thing last minute without having time to put together something to say, but I could have made some announcements. Damm! I have to watch for another assembly like that. I am not a political animal!
Okay, that was just a ramble. Maybe somehow related to life today but I have to leave it until later to figure out the connection.
David is home -- went to work yesterday and intends to go today after he gets a blood draw. His "numbers" are not the best and they may want him back in the hospital. I am encouraging him not to fight that decision if that is the decision, but truth is that he feels pretty good. Relatively speaking, that is, and the hospital is incredibly boring. I compare it to pregnant women who are told to go on bed rest -- boring, yes, ultimately the right decision, YES! The medication he is on right now is giving him much better blood pressure, but it is also dangerous. It can cause serious arrhythmia and the chance of arrhythmia increases over time. His only other option is to have a left ventricular assist device (LVAD) which means at least two open heart surgeries -- one of insert the LVAD and another to take it out and put in the new heart. We are hoping to avoid that.
Julia had a hard day yesterday -- not very well behaved at school. We had an appointment with Marilyn and then went home and did not have therapy. (Marilyn is making a big effort to talk to Julia during our therapy and Julia is slowly responding. They had a conversation of sorts -- Marilyn asking questions and Julia sort of responding. They talked about Julia playing pretend and pretending to be animals all the time. The conversation got down to Julia saying that she was scared to be a little girl when she played -- and this was not an answer to a question but a very clear statement made by Julia. Julia prefers to be an animal -- squirrels these day.) Julia played while the home nurse was at our house and then watched tv with David while I did a bit of grocery shopping. I started dinner when I returned and when I asked Julia to set the table, she had a melt down. I would say that this meltdown had the feeling of coming all week.
I put her in time out on the stairs. She ranted and raved there -- she doesn't like me to control her so blatently and completely and will usually do almost anything to avoid sitting on that step. I usually let her leave time out when she has calmed down and is ready to apologize and do what needs to be done. Yesterday, she left time out to come into the kitchen and tell me how much she didn't like being in time out and she didn't like me.
That was when I lost it and walked her upstairs to her bedroom to finish some time out and calming down time. This is the first time she has had time out away from us and oh, she was angry. She did not let us forget that she was upstairs suffering, and she did stomp for a little while. But the surprising thing to me was that she spent most of the time calling down to us to tell us what she was thinking of doing -- somewhat short of threats but definitely she would have liked some harm to come to me. She did calm down and came down stairs. Then she was all appologies and wanting to please. I had made one of her favorite noodle dishes and she ate a lot of it, telling me that she loved it and generally trying to make it up to me.
We need to do more regulation -- trampoline jumping, taking the dog on walks and swimming -- to keep her in a good place.
This morning there was a school concert with all the kids singing. There were two performances with the gym jammed at the one we were at. I expect the earlier one was as crowded. Julia spent the concert very happily on my lap -- I don't think we have a performer in this one.
I realized much too late that I should have taken the opportunity to saw a few PTO words to the assembled group. Even just one of those assembled crowds is the largest Franklin School commuity get together. I did not have the nerve to do such a thing last minute without having time to put together something to say, but I could have made some announcements. Damm! I have to watch for another assembly like that. I am not a political animal!
20 January 2010
Home!
David came home around dinner time tonight. A visiting nurse come over almost as soon as we got home and she explained the working of David's pump. During the same time one of Julia's therapists left and another started working with her. Julia had some trouble before I left for David and gave both of her therapists a hard time tonight. After the nurse left, David and I sat down for something to eat (and I was very glad that I had done all the prep work earlier in the afternoon) and Julia refused to eat.
When we were finally alone, the three of us went upstairs and all snuggled into our big bed and watched Horton. After a few minutes in bed, Julia remembered to be hungry and was very grateful when I brought up a bowl an pasta shells with cheese and a glass of her milk.
When we were finally alone, the three of us went upstairs and all snuggled into our big bed and watched Horton. After a few minutes in bed, Julia remembered to be hungry and was very grateful when I brought up a bowl an pasta shells with cheese and a glass of her milk.
Short and imperfect explanation of heart transplant patient status.
They have told us about four categories - 1a, 1b, 2, and 7. One might ask what happened to 3-6 but there are always so many other questions to ask.
A 7 is for people who will eventually need a heart but are not in danger of ill health or death. 7 can also be used for someone who is listed as a 1 or 2, but is inactive. If we decided to go to CanCun for the weekend, David could go inactive for that amount of time and be a 7 for a few days.
2 is what David has been since he's been on the list. It is for people who have a need for a heart but are living at home, probably working or going about their day and are on meds. 2's get hearts but it is not necessary for them to have a heart NOW.
1's need the heart now. 1b is for people who are probably home but on heavy medication and whose condition is life threatening. 1a is reserved for people in the hospital waiting for a heart.
David is a 1a right now and will drop to a 1b when he comes home. He still wants to go to work and he is bored enough to do it, but he will not be able to drive on the medication running through that PICC line.
As for talking while the nurse was putting in the PICC line -- I have the print out in front of me and it was really okay for me to be quiet while the nurse was running a tiny tube into my husband's heart. LOL.
Julia had a good day at school yesterday and was cooperative and productive with her two therapists last night. She will talk about David's condition to anyone who asks so her class knows all about it, including that David needs to be "unplugged" to go potty. This apparently is very funny!
They have told us about four categories - 1a, 1b, 2, and 7. One might ask what happened to 3-6 but there are always so many other questions to ask.
A 7 is for people who will eventually need a heart but are not in danger of ill health or death. 7 can also be used for someone who is listed as a 1 or 2, but is inactive. If we decided to go to CanCun for the weekend, David could go inactive for that amount of time and be a 7 for a few days.
2 is what David has been since he's been on the list. It is for people who have a need for a heart but are living at home, probably working or going about their day and are on meds. 2's get hearts but it is not necessary for them to have a heart NOW.
1's need the heart now. 1b is for people who are probably home but on heavy medication and whose condition is life threatening. 1a is reserved for people in the hospital waiting for a heart.
David is a 1a right now and will drop to a 1b when he comes home. He still wants to go to work and he is bored enough to do it, but he will not be able to drive on the medication running through that PICC line.
As for talking while the nurse was putting in the PICC line -- I have the print out in front of me and it was really okay for me to be quiet while the nurse was running a tiny tube into my husband's heart. LOL.
Julia had a good day at school yesterday and was cooperative and productive with her two therapists last night. She will talk about David's condition to anyone who asks so her class knows all about it, including that David needs to be "unplugged" to go potty. This apparently is very funny!
19 January 2010
PICC line
Sitting with David while he gets a PICC line inserted into an arm and going to his heart. Right now, it looks like they are going to get him home tomorrow alhtough I am guessing on Thursday.
Watching the nurse prepare and although watching is intriguing, I am so glad that I do not do that work. I could be percise but could I never be steril enough. I want to ask about every step but I don't want to distract her. I really want to get up and watch the nurse closely but again distraction. I sit here typing with a mask on -- oh, I don't like masks either -- worried the the tapping of the keyboard is a distraction.
How quiet can a scribbler be?
David's status right now is 1a, at home with this medication it will be 1b. This is better than a 2 which he has been, but . . . . where are the hearts?
The nurse said it would take 45 minutes but it has been less than 20 and she is cleaning up. "Went right in" she says. I fell like this is a good sign. Sign of what? Who knows.
Home would be great. Or maybe by preparing David to go home, a new heart will appear.
Watching the nurse prepare and although watching is intriguing, I am so glad that I do not do that work. I could be percise but could I never be steril enough. I want to ask about every step but I don't want to distract her. I really want to get up and watch the nurse closely but again distraction. I sit here typing with a mask on -- oh, I don't like masks either -- worried the the tapping of the keyboard is a distraction.
How quiet can a scribbler be?
David's status right now is 1a, at home with this medication it will be 1b. This is better than a 2 which he has been, but . . . . where are the hearts?
The nurse said it would take 45 minutes but it has been less than 20 and she is cleaning up. "Went right in" she says. I fell like this is a good sign. Sign of what? Who knows.
Home would be great. Or maybe by preparing David to go home, a new heart will appear.
Tuesday
Just in case David doesn't know how much he is missed -- we were so late getting up this morning!!! I have to turn that alarm up so it doesn't just blend in with sleep. We did make it to school on time and we were lucky that we have food in the freezer - toasted thawed pancakes are more than quick!
Julia would really rather not go to school (she likes to say, "no, thank you"), but today my seriousness -- not anger or frustration -- seemed to communicate. I do wish I could view myself from the outside.
We made it to school on time and Julia couldn't wait to sit down and start her journaling -- she starts off drawing and then writes a bit -- not at all intelligible without great patience and help from her, but she is willing to do both.
That brings me to fish oil. Julia has been taking 1.5 kid dose of fish oil since the summer. I thought it was doing some good but was not sure where. We took her
off of it when we started the Adderall. After 2 weeks we started again because
I was sure there was no drug interaction. Although the 7.5 mg of Adderall helps give Julia a bit of attention, she was irritable, grumpy and short tempered -- much more so that before the med and I thought it was a side effect. But I think it is just Julia off of fish oil. Within two weeks the bad moods have abated. My autism coordinator doc is putting her on 2 grams although we have to build up to it. Right now she is up to .8 gram a day and it will be another two or three weeks before we get her up to 2 grams. I am interested to see how she does. I would so much rather she do fish oil than another med.
Almost forgot to add this - Julia played a game last night and asked to play it again and again!!! I could not be more excited. I have been searching and buying games for Christmas and her birthday and I am finally understand what kind of thing she needs. Topsy Turtle is the one that has finally captured her, and Hyperdash and Wiggly Caterpillar (??) are also good. Not board games, but taking turns and cause and effect. It is more than great!
Julia would really rather not go to school (she likes to say, "no, thank you"), but today my seriousness -- not anger or frustration -- seemed to communicate. I do wish I could view myself from the outside.
We made it to school on time and Julia couldn't wait to sit down and start her journaling -- she starts off drawing and then writes a bit -- not at all intelligible without great patience and help from her, but she is willing to do both.
That brings me to fish oil. Julia has been taking 1.5 kid dose of fish oil since the summer. I thought it was doing some good but was not sure where. We took her
off of it when we started the Adderall. After 2 weeks we started again because
I was sure there was no drug interaction. Although the 7.5 mg of Adderall helps give Julia a bit of attention, she was irritable, grumpy and short tempered -- much more so that before the med and I thought it was a side effect. But I think it is just Julia off of fish oil. Within two weeks the bad moods have abated. My autism coordinator doc is putting her on 2 grams although we have to build up to it. Right now she is up to .8 gram a day and it will be another two or three weeks before we get her up to 2 grams. I am interested to see how she does. I would so much rather she do fish oil than another med.
Almost forgot to add this - Julia played a game last night and asked to play it again and again!!! I could not be more excited. I have been searching and buying games for Christmas and her birthday and I am finally understand what kind of thing she needs. Topsy Turtle is the one that has finally captured her, and Hyperdash and Wiggly Caterpillar (??) are also good. Not board games, but taking turns and cause and effect. It is more than great!
Hello annonymous commenter
To my annomous commenter: Who are you? And where are you from? At first you creeped me out a bit, but from what I can tell, English is not your first language. And let me know what college assignment my post helped with. I am very curious.
18 January 2010
Julia and I woke up at 7:30, very late for her and lovely for me. We watched Sesame Street and ate our breakfast of home made muffins, grandpa sent grapefruit, vitamins and medications, milk for Julia and diet coke for me -- some how diet coke is my recent preferred cafine delivery beverage.
Julia's dictation: The T-Rex is carrying the flower for the raptors to eat.
_________________________________
Later. We are doing our hospital visit for the day. It is good to have a long weekend and for Julia and I to get used to visiting and having some meals with David without school and therapy getting in the way. We are defining new normals -- at least, that is what I feel like we are doing. I expect this normal will alter over and over during the next few months. David has asked for his old life back. Yeah, me too, but I am in the "change is life" mode right now and moving full speed ahead.
One tell tale sign that this is tough on Julia -- she refuses to kiss David which is incredibly unusual for her. We are just going with it. I hope she gets back to those kisses when David gets home.
David is responding really well to a new med and they are talking about sending him home with the IV which he would really love. But that is the news at this minute and yesterday they said that they never sent anyone home with an IV.
We are trying to keep Julia occupied at the hospital without watching tv all the time. I've brought games for us to play together and I let her play with her Leapster as much as she wants to.
Then, when no one can take it anymore, we turn on the tv and veg out together.
Julia's dictation: The T-Rex is carrying the flower for the raptors to eat.
_________________________________
Later. We are doing our hospital visit for the day. It is good to have a long weekend and for Julia and I to get used to visiting and having some meals with David without school and therapy getting in the way. We are defining new normals -- at least, that is what I feel like we are doing. I expect this normal will alter over and over during the next few months. David has asked for his old life back. Yeah, me too, but I am in the "change is life" mode right now and moving full speed ahead.
One tell tale sign that this is tough on Julia -- she refuses to kiss David which is incredibly unusual for her. We are just going with it. I hope she gets back to those kisses when David gets home.
David is responding really well to a new med and they are talking about sending him home with the IV which he would really love. But that is the news at this minute and yesterday they said that they never sent anyone home with an IV.
We are trying to keep Julia occupied at the hospital without watching tv all the time. I've brought games for us to play together and I let her play with her Leapster as much as she wants to.
Then, when no one can take it anymore, we turn on the tv and veg out together.
17 January 2010
I had no idea what to make for dinner, and asked Julia what she wanted. I really expected her to say rice or noodles or dumplings, but she opened the freezer and pointed to an orange container. "This," she said. "Do you know what that is?" I asked. "No," she answered, and as she walked by to the living room added, "don't worry, it's good."
Tonight, I got really angry at Julia for not focusing on the work we were doing. Ugh! I was ugly. In utter frustration, I assigned her a page of punishment work . . . and she did it. For better or worse, Julia really responds to my anger. I don't want this to be the only way that she is able to do work. I did apologize to her and Julia forgave me and then explained to me what I could do
to calm down and have a better attitude about work. She may not do those things all the time, but she is listening.
Oh, I love my girl. She is scared and stressed and worried. She has been spending a lot of times in my lap and in my arms. And that is good for both of us.
Tonight, I got really angry at Julia for not focusing on the work we were doing. Ugh! I was ugly. In utter frustration, I assigned her a page of punishment work . . . and she did it. For better or worse, Julia really responds to my anger. I don't want this to be the only way that she is able to do work. I did apologize to her and Julia forgave me and then explained to me what I could do
to calm down and have a better attitude about work. She may not do those things all the time, but she is listening.
Oh, I love my girl. She is scared and stressed and worried. She has been spending a lot of times in my lap and in my arms. And that is good for both of us.
16 January 2010
Julia's birthday
Yesterday, David went to the doctors to check out the water retention problem he has been having and by the early afternoon, he was admitted to the hospital. We knew that hospitalization was a possibility but once again did not realize how close he was to it. They started him on a diuretic IV and put a cath into his heart to find out from the inside how his heart is performing. The docs also bumped David's status from a 2 to a 1b, which ups his priority to get a heart.
I drove home from the hospital last night, stopped for a store made birthday cake. I accepted that I was not going to have time to make a cake, and that I might not have time to do much of what I wanted for Julia's party but she was still going to have a party.
And she did.
Julia and I woke up this morning with kisses and happy birthdays. We started getting out day ready and soon Ellen, one of our line therapist, joined us. We set the table, hung decorations, decorated the cake, did up Julia's hair, and were ready enough when little girls started arrives.
After cake, we opened presents. Julia's favorites were the two playmobile sets she received. Her aunt and uncle sent her a dinosaur set, and one of her friends brought her a garden set.
By the time we visited David today, the docs had stopped the diuretic but put him on an IV that should increase the effectiveness of his heart. He can only be on it for a short time, it must be delivered via IV, and he must be weaned off it before he goes home. No word when that will be, and he is very bored after 24 hours in hospital. It is time to start that great american novel. He has been bumped to 1a status because of the new drug.
Julia and I hung out with David for a few hours. We opened the last of Julia's birthday presents, watched tv, explained what all of David tubes and beepers did, ate supper, and shared the last of Julia's birthday cake. I left a game in David's hospital room and I hope I can get Julia to play with her Leapster instead of watching tv as the week progresses. Because there is a chance that David will be staying at the hospital until he gets a new heart, we need to do some good things there and not just veg out with the tv.
While we were eating, Julia asked: "Please, Dad, can you come home now."
Julia and I came home, played with the dino/garden sets and got ready for bed. She did not want to take her hair down but agreed to take off her crown and hair decorations. She settled down to bed, told me she missed her Daddy, and went to sleep.
Really not bad at all for a ninth birthday.
I drove home from the hospital last night, stopped for a store made birthday cake. I accepted that I was not going to have time to make a cake, and that I might not have time to do much of what I wanted for Julia's party but she was still going to have a party.
And she did.
Julia and I woke up this morning with kisses and happy birthdays. We started getting out day ready and soon Ellen, one of our line therapist, joined us. We set the table, hung decorations, decorated the cake, did up Julia's hair, and were ready enough when little girls started arrives.
Four little girls -- three first or second graders and one 3 year old sibling -- invaded with joy and excitement. I had to laugh at myself for being worried, although still for the first half hour or so, I worried that Julia would be able to handle herself, or whether this would just be too much stimulation. She had Ellen to help her and other than two times when her emotions got the best of her, Julia was pretty much self-regulated.
We had planned for a few games if the girls needed it, but I was pretty sure that they would want to just play and that was exactly what they did. The girls started out playing with Julia's doll house and the animals that inhabit it. The calico critter kitchen set was the first present that Julia opened, and the only one she opened before the kids came over. there are actually muffins in the muffin pan. Tables were set, food prepared and served, and various animals went to bed. Next, they played with Julia's little pet shop collection and although Julia can take out lots of her pets at the same time when she is alone, four girls all spreading LPS stuff all over the play room. It was quite impressive to see all of her LPS structures up and working with pets visiting each other and using all the tiny tiny accessories. All at the same time. After an hour of playing, we sat down to peanut butter and jelly, grapes, orange slices and punch, and after everyone had something close to food, we lit candles and sang happy birthday. My girl was so happy. She blew out her tinkerbell candle and then asked all the girls to blow with her for the rest of the candles.
After cake, we opened presents. Julia's favorites were the two playmobile sets she received. Her aunt and uncle sent her a dinosaur set, and one of her friends brought her a garden set.
Amazing how a gardener with a green house and lots of plastic plants look to good with a T-rex, a few raptors and some plastic dino setting. She got some cool 3D books and puzzles and more games (from me). We played one of the games and soon it was time for the girls to go home.
Julia had such a good time that tonight she asked if she could have a party again.
By the time we visited David today, the docs had stopped the diuretic but put him on an IV that should increase the effectiveness of his heart. He can only be on it for a short time, it must be delivered via IV, and he must be weaned off it before he goes home. No word when that will be, and he is very bored after 24 hours in hospital. It is time to start that great american novel. He has been bumped to 1a status because of the new drug.
Julia and I hung out with David for a few hours. We opened the last of Julia's birthday presents, watched tv, explained what all of David tubes and beepers did, ate supper, and shared the last of Julia's birthday cake. I left a game in David's hospital room and I hope I can get Julia to play with her Leapster instead of watching tv as the week progresses. Because there is a chance that David will be staying at the hospital until he gets a new heart, we need to do some good things there and not just veg out with the tv.
While we were eating, Julia asked: "Please, Dad, can you come home now."
Julia and I came home, played with the dino/garden sets and got ready for bed. She did not want to take her hair down but agreed to take off her crown and hair decorations. She settled down to bed, told me she missed her Daddy, and went to sleep.
Really not bad at all for a ninth birthday.
15 January 2010
Day before Julia's birthday
Today is the day before Julia's ninth birthday -- at least the day we celebrate her growing another year. I think of her birth family as we shop for party supplies -- Julia is going to have a Tinker Bell party. The three little girls we've invited to come over are almost as excited to come as Julia is to have a party. And it will be simple -- a few games, playing with her toys which is what she is really looking forward to, and cake (although we've changed it from carrot to vanilla) and opening presents. I think that will take up the two hours.
I think of her birth family and wonder if there is a mother who thinks of her. I know that her birth date, even with the note that she was supposedly found with that gives tomorrow as the date, may or may not be real, and so maybe it is in Julia or October that her birth mother, or father, or granpa looks at the stars and wonders what happen to the little girl that they left. I wonder if there are challenges in the family, the kind that we have with Julia, or if they could possibly know how far she needs to come to heal from her years in China. I wonder if they could possibly know how much her life, her accomplishments, her growth are cherished and celebrated by the parents that raise her now.
When we first approached adoption, I thought that I could never share a child with another set of parents, but as Julia grows, I would give the world to connect with the people whose gene pool she shares. I cannot imagine my life without her and I am so sorry that they have to live without even a word about her. So I send them my love, and my thanks, and the thought that their girl, our girl is growing.
I think of her birth family and wonder if there is a mother who thinks of her. I know that her birth date, even with the note that she was supposedly found with that gives tomorrow as the date, may or may not be real, and so maybe it is in Julia or October that her birth mother, or father, or granpa looks at the stars and wonders what happen to the little girl that they left. I wonder if there are challenges in the family, the kind that we have with Julia, or if they could possibly know how far she needs to come to heal from her years in China. I wonder if they could possibly know how much her life, her accomplishments, her growth are cherished and celebrated by the parents that raise her now.
When we first approached adoption, I thought that I could never share a child with another set of parents, but as Julia grows, I would give the world to connect with the people whose gene pool she shares. I cannot imagine my life without her and I am so sorry that they have to live without even a word about her. So I send them my love, and my thanks, and the thought that their girl, our girl is growing.
14 January 2010
Clay dinosaurs
I really love using Julia's work to scrap with. I fully expect that one day she will ban me from doing anything at all. So, I will have fun now. _______________
After comments. I received one comment that I do not understand, and those kind of comments always get me wondering. When I take pictures of Julia's art and then use them on a scrapbook page, I do it for my own and Julia's fun. Julia really likes the leaves that I put in and loves to see pictures of her work. But I don' t romantisize it. I did not make up the actions of the dinosaurs or pose them or make them prettier than they are. She, in fact, told me that the mother was taking care of her eggs and the sister was singing. I don't mean to suggest that Julia does any of the scraping nor do I mean to show any disrespect to Julia's work by playing with it. And of course, I am very proud of her work. Like the mother dinosaur tht I am.
Resolution number I don't know. Oh, I didn't really number them. But I promised myself and my line therapists that I would get some crafts and projects together for them. And today is the day to start. Maybe as she makes things, I'll post pictures and links to where I found the directions.
And I just learned how to copy on my new printer.
And I called some architects and design/build teams -- have to admit that I am not comfortable with the architect I talked to. We'll see at the meetings how I feel.
And I feel like we are in a new phase of waiting for David's heart -- not quite as stressed, don't jump as high when the phone rings, don't make every appointment with a heart transplant clause.
Julia and I are going shopping for her party after therapy today, and I can take that opportunity to talk about what it is like to host a party. Fingers and toes are crossed for a good time for all.
And I just learned how to copy on my new printer.
And I called some architects and design/build teams -- have to admit that I am not comfortable with the architect I talked to. We'll see at the meetings how I feel.
And I feel like we are in a new phase of waiting for David's heart -- not quite as stressed, don't jump as high when the phone rings, don't make every appointment with a heart transplant clause.
Julia and I are going shopping for her party after therapy today, and I can take that opportunity to talk about what it is like to host a party. Fingers and toes are crossed for a good time for all.
13 January 2010
Tonight, after we read stories and turned out the light, Julia said: "Mommy, the kids don't understand me." What kids, I asked. "The kids in school. They don't understand." I asked her what she meant and she lost her clarity, but said that, "Julia gets angry, Julia gets frustrated." She told me that she had to learn to get calm. And then she talked about Emma and Peyton, two little girls in her class.
And then, once again, she turned over and went to sleep. I feel, and I am not at all sure that this is really what is happening, that Julia is calming down, that she is mellowing out at night, calming down at the end of day, and that she finds that she had things to say to me.
During out team meeting tonight, our meeting with as many of the line therapists as can make it and our lead therapist, Julia threw her arms around me and asked me if I would be her partner. We had been talking about a game and it was very sweet.
I went to the doctor who is our autism consultant today. We talked for an entire hour. What luxury! We talked about drugs and vitamins, we talked about traditional western medicine and the vitamins, supplements, and other treatments of the DAN doctors. He believes in using what works. We talked about all of the therapy that Julia receives and he had suggestions on how to tweak her therapy. I asked him so many of my questions and he offered his advice. He suggested that I increase her Fish Oil dose and when we get her Hep B checked, to add some tests to her labs. I will see him again in March.
And then, once again, she turned over and went to sleep. I feel, and I am not at all sure that this is really what is happening, that Julia is calming down, that she is mellowing out at night, calming down at the end of day, and that she finds that she had things to say to me.
During out team meeting tonight, our meeting with as many of the line therapists as can make it and our lead therapist, Julia threw her arms around me and asked me if I would be her partner. We had been talking about a game and it was very sweet.
I went to the doctor who is our autism consultant today. We talked for an entire hour. What luxury! We talked about drugs and vitamins, we talked about traditional western medicine and the vitamins, supplements, and other treatments of the DAN doctors. He believes in using what works. We talked about all of the therapy that Julia receives and he had suggestions on how to tweak her therapy. I asked him so many of my questions and he offered his advice. He suggested that I increase her Fish Oil dose and when we get her Hep B checked, to add some tests to her labs. I will see him again in March.
12 January 2010
I said to David yesterday that I felt some sort of shift in Julia -- not that she is doing anything incredibly different and not that she is easily complying with instructions but she is a fraction more compliant, she can be pursuaded, can be talked for rocked down from the precipice of anger into a gruging copliance that sometimes results in working with another person. It is interesting to watch this from inside and out. I can almost feel at least my perception of her emotions.
I think about where we have been and I can see the very strong wall that Julia had built between herself and any person who gets close to her. And I can see that the wall is coming down, but painfully slowly, brick by brick.
An amazing thing I saw today! This morning when I took Julia to school and settled her into her work space, she started sketching. Using short lines that advanced her picture little by little, with a softer pressure on her pencil. She has been using the eraser for the last few weeks, in fact, everyone at school has noticed this because it is so different from what she has done previously.
I don't know if someone has told her about sketching, or if she has watched it. Her art teacher is pretty incredible and some of the line therapists draw as well. I don't think that she has received any direct instruction, or frankly, if she has had any instruction at all because she rarely does as instructed. But whatever, Julia is sketching!
I think about where we have been and I can see the very strong wall that Julia had built between herself and any person who gets close to her. And I can see that the wall is coming down, but painfully slowly, brick by brick.
An amazing thing I saw today! This morning when I took Julia to school and settled her into her work space, she started sketching. Using short lines that advanced her picture little by little, with a softer pressure on her pencil. She has been using the eraser for the last few weeks, in fact, everyone at school has noticed this because it is so different from what she has done previously.
I don't know if someone has told her about sketching, or if she has watched it. Her art teacher is pretty incredible and some of the line therapists draw as well. I don't think that she has received any direct instruction, or frankly, if she has had any instruction at all because she rarely does as instructed. But whatever, Julia is sketching!
10 January 2010
Sunday morning
Julia worked with me for an entire hour this morning -- starting with sight words and reading a book, moving on to coloring according to directions which included counting, and then to a words game that included guessing letters. Finally, we worked with her Leapster which went beyond the hour and started with games that are hard for her and then went into play.
09 January 2010
Julia has a day of therapy ahead, some of it making up for time we've missed this week, some just part of this semester's plan. In the summer we will go back to a five day a week therapy program so that we can have weekends as a family, but for now, . . . Sometimes I feel so constrained by therapy and now for the wait for David's heart, and then sometimes it is just a boundary, a basic rule. It is my ballet.
Little by little, the therapist -- and us of course -- are getting Julia to play games. The three letter word game sent by my friend, Robin, for Christmas is one of those that we are working on. Making 6 3-letter words is all she needs to do to qualify as playing a game. She still needs me to support her to do it, but we've gotten through it 4 times. And today, for at least one word, she was completely in charge.
Baby steps.
I am finally getting back to finishing my back hall. Painting today,maybe even tomorrow, and then I hope that I can finish the sanded floor. Starting by going through the baskets and shelves to see how we are using the new storages places. This takes time. And starting with this before noon, I don't start painting until 2. This is so much of my life, so many tasks take so very long to prepare for.
Little by little, the therapist -- and us of course -- are getting Julia to play games. The three letter word game sent by my friend, Robin, for Christmas is one of those that we are working on. Making 6 3-letter words is all she needs to do to qualify as playing a game. She still needs me to support her to do it, but we've gotten through it 4 times. And today, for at least one word, she was completely in charge.
Baby steps.
I am finally getting back to finishing my back hall. Painting today,maybe even tomorrow, and then I hope that I can finish the sanded floor. Starting by going through the baskets and shelves to see how we are using the new storages places. This takes time. And starting with this before noon, I don't start painting until 2. This is so much of my life, so many tasks take so very long to prepare for.
08 January 2010
Julia on Friday
Julia is playing a new game with one of her therapists. It is called pictureka and it is basically a game of looking for small pictures on a large board of pictures. She is paying attention and doing it without any protest at all.
She also got all smiles on her behavior report today.
Sometimes, no, all the time, I feel like we are trying to give Julia back the five and a half years she lost to China. Trying to give her those and at the same time keep her growing with her peers. Something crazy about doing both at once. Should I be just letting her catch up -- make up her lost kidhood and just forget about moving her with her peers?
She also got all smiles on her behavior report today.
Sometimes, no, all the time, I feel like we are trying to give Julia back the five and a half years she lost to China. Trying to give her those and at the same time keep her growing with her peers. Something crazy about doing both at once. Should I be just letting her catch up -- make up her lost kidhood and just forget about moving her with her peers?
What happened
There are many times when I am trying to teach Julia something and I cannot explain what kind of answer I am expecting. Such are my attempts to define words like how and why and what happened. I am looking for the behaviors leading to some event, the process used to get from point A to point B, or the rationale for doing some behavior. Many times I get answers like I wet, I hurt, I sorry. Sometimes I get crazy answers like brown, and I know that Julia is trying with all her might to satisfy me.
So yesterday, I did something . . . rather odd in my book.
Julia and I were at the table after school. I was setting up some work for her and she was eating her snack -- a bowl of noodles and a cup of hot chocolate. Julia loves to drink hot chocolate with a spoon but it really does take two hands to secure the cup and quickly move the spoon from cup to mouth. She also likes to pull her shirt up to her nose and sniff. And so, she had one hand on her shirt and the other on her spoon. The inevitable happened and the milk -- a good deal of her cup -- spilled over with milk on the table, her sweater and pants, the chair and the floor. Latkah took care of the floor immediately. I saw no reason to jump up to clean up because nothing was going to be ruined by waiting. I asked her what happened and she could not tell me. She told me that the milk was on the table, on the floor, and wetting her clothes. She could tell me that she wanted to change. But she could not answer how it happened or what happened to spill the milk. I did not want her to get up until she told me and that itself kept her attention. She does not like being wet like that. We went back and forth for what seemed like a long time, when, pretty much in frustration, I picked up the cup and intentionally spilled a bit of the chocolate milk on Julia's sweater, asked myself the question of what happened, and then answered it. I did this at least three times and each time Julia was shocked that I spilled milk on her clothes, but finally she was able to tell me that the spoon knocked over the cup of hot chocolate.
I then very quickly praised her, took off her clothes -- and she was soaked to the skin, sent her upstairs to change into cozy clothes, and cleaned up the mess that Latkah couldn't reach. When Julia came downstairs, as I asked her if she now understood that "What happened" or "How did it happen" question. And she said, I don't think so.
So.
Well, it was a try.
So yesterday, I did something . . . rather odd in my book.
Julia and I were at the table after school. I was setting up some work for her and she was eating her snack -- a bowl of noodles and a cup of hot chocolate. Julia loves to drink hot chocolate with a spoon but it really does take two hands to secure the cup and quickly move the spoon from cup to mouth. She also likes to pull her shirt up to her nose and sniff. And so, she had one hand on her shirt and the other on her spoon. The inevitable happened and the milk -- a good deal of her cup -- spilled over with milk on the table, her sweater and pants, the chair and the floor. Latkah took care of the floor immediately. I saw no reason to jump up to clean up because nothing was going to be ruined by waiting. I asked her what happened and she could not tell me. She told me that the milk was on the table, on the floor, and wetting her clothes. She could tell me that she wanted to change. But she could not answer how it happened or what happened to spill the milk. I did not want her to get up until she told me and that itself kept her attention. She does not like being wet like that. We went back and forth for what seemed like a long time, when, pretty much in frustration, I picked up the cup and intentionally spilled a bit of the chocolate milk on Julia's sweater, asked myself the question of what happened, and then answered it. I did this at least three times and each time Julia was shocked that I spilled milk on her clothes, but finally she was able to tell me that the spoon knocked over the cup of hot chocolate.
I then very quickly praised her, took off her clothes -- and she was soaked to the skin, sent her upstairs to change into cozy clothes, and cleaned up the mess that Latkah couldn't reach. When Julia came downstairs, as I asked her if she now understood that "What happened" or "How did it happen" question. And she said, I don't think so.
So.
Well, it was a try.
Walking snow meditation
No, I am not that together, but as I was blowing and shoveling snow this morning -- before coffee and sustenance and so maybe I was delusional -- I thought what a nice thing it would be to snow blow the sidewalks around my whole block after a big storm. Paying backwards and forwards for a million little things my neighbors have done, a million smiles and pleasant greetings, and to make those who scowl or ignore a dog walker like me smile. Who knows it could start some sort of community trend.
Is that what I am looking for, idea wise, for the PTO?
Recently, I heard a report about inclusion and integration. What the reporter said was the the only groups of kids in high school who were fully integrated were the brainy-type nerds and the special needs kids. The conclusion was that this development was not good for integration because it made integration look like something only "outcasts" do. So, is it only when your natural peer group -- white, AA, Latino, girls, jocks, etc. -- will not accept you, then it's time to find others who have your flaws -- that is, if you consider being smart or autistic or unable to hear a flaw. This sets my mind a whirl.
Is it that only when we do not fit our natural, maybe biological is a better word, groups, do we venture to find those who are like minded? My father always boasted that when he played football in high school, he had a lot of AA friends, but when he became an adult, he did not retain those friendships. Had he outgrown -- that is, stopped playing intense football -- his need for those friends? My parents were aghast when I danced with an AA boy in a show in high school, and I was very pleased to be dancing with a great dancer. Was it just my desire to have a good partner in something that I was so interested in that led me to accept him as a partner? Was that a part of it? And it is one thing to talk about the "easy" differences -- race, religion, etc. What of the subtle difference? The very cool girl in 10th grade who was assigned to be my lab partner in bio who got to be a friend of mine -- Did we find common ground only or especially because of that frog muscle?
How is that translated to a grammar school where the four major groups of students get further and further apart as they go up in grades?
I care. I care so much.
Is that what I am looking for, idea wise, for the PTO?
Recently, I heard a report about inclusion and integration. What the reporter said was the the only groups of kids in high school who were fully integrated were the brainy-type nerds and the special needs kids. The conclusion was that this development was not good for integration because it made integration look like something only "outcasts" do. So, is it only when your natural peer group -- white, AA, Latino, girls, jocks, etc. -- will not accept you, then it's time to find others who have your flaws -- that is, if you consider being smart or autistic or unable to hear a flaw. This sets my mind a whirl.
Is it that only when we do not fit our natural, maybe biological is a better word, groups, do we venture to find those who are like minded? My father always boasted that when he played football in high school, he had a lot of AA friends, but when he became an adult, he did not retain those friendships. Had he outgrown -- that is, stopped playing intense football -- his need for those friends? My parents were aghast when I danced with an AA boy in a show in high school, and I was very pleased to be dancing with a great dancer. Was it just my desire to have a good partner in something that I was so interested in that led me to accept him as a partner? Was that a part of it? And it is one thing to talk about the "easy" differences -- race, religion, etc. What of the subtle difference? The very cool girl in 10th grade who was assigned to be my lab partner in bio who got to be a friend of mine -- Did we find common ground only or especially because of that frog muscle?
How is that translated to a grammar school where the four major groups of students get further and further apart as they go up in grades?
I care. I care so much.
07 January 2010
Snow, snow, snow. The last week has been very cold, very blue skies, and no snow. A feeling grows day by day, that waiting for the other shoe to drop, for the sky to fall, for something -- well, just waiting for snow, more snow. And today that fresh blanket fell.
When I asked Julia about today at school, she told me that she didn't hit anyone, she didn't throw snow or ice, she only pulled Sheila's hair. Sheila is one of the aide's who work with her and she was trying to get Julia to do math.
The person who was supervising the playground yesterday when Julia threw the ice at her classmate (cutting his eye), said that he thought that Julia meant to hit the boy, but Sheila said that this boy was one of the kids that teased and bothered Julia last year in the playground, and that maybe now, he will not bother her.
Oh, oh, my. Sometimes I don't even know how to form an opinion.
The snow was too much for me to drive in -- no, I am not a real native yet -- and I cancelled attachment therapy today and Julia and I came home after school. We had about an hour before a therapist came and so we worked on her sight word review and then I tried playing some with words.
I print four or five words on a line and put small squares and taller rectangles around the letters. Then I do another line of the squares and rectangles in the shape of those words and she has to fill in the shapes with the words. Finally, I make another set of shapes into words and Julia guesses letters to make a new word or phrase. Julia still needs help with all parts of this, especially the guessing of the letters. Guessing is something that is beyond her ability. Like playing games although little by little, and it will still be a long time, she is learning games.
I so hope that one day some of this is fun, just as it is supposed to be.
When I asked Julia about today at school, she told me that she didn't hit anyone, she didn't throw snow or ice, she only pulled Sheila's hair. Sheila is one of the aide's who work with her and she was trying to get Julia to do math.
The person who was supervising the playground yesterday when Julia threw the ice at her classmate (cutting his eye), said that he thought that Julia meant to hit the boy, but Sheila said that this boy was one of the kids that teased and bothered Julia last year in the playground, and that maybe now, he will not bother her.
Oh, oh, my. Sometimes I don't even know how to form an opinion.
The snow was too much for me to drive in -- no, I am not a real native yet -- and I cancelled attachment therapy today and Julia and I came home after school. We had about an hour before a therapist came and so we worked on her sight word review and then I tried playing some with words.
I print four or five words on a line and put small squares and taller rectangles around the letters. Then I do another line of the squares and rectangles in the shape of those words and she has to fill in the shapes with the words. Finally, I make another set of shapes into words and Julia guesses letters to make a new word or phrase. Julia still needs help with all parts of this, especially the guessing of the letters. Guessing is something that is beyond her ability. Like playing games although little by little, and it will still be a long time, she is learning games.
I so hope that one day some of this is fun, just as it is supposed to be.
06 January 2010
Today, I am doing a lot of PTO desk work -- emails mostly and some phone calling. The goals I set for myself, most of which were much to lofty to do much about, are like deflated balloons littering my mental landscape. But then, if Barack is not moaning and groaning over his first year, there is no reason for me to. Maybe I'll get to change our little world but it will take a bit longer than I planned.
I am learning patience.
Julia came home today in another good mood; however, she had thrown a chunk of ice at a boy in his class, hitting him in the face and resulting in a cut under his eye. Even as her teacher was telling me about this, Julia was hugging me and asking to be forgiven. As I understand it, Julia threw the ice, which she called a snow ball and I am sure she doesn't really understand the difference, in response to an adult telling her to put the ice down. Oh, that is my Julia! Oy! How do I teach her about this??
I put her into my arms when we got home and I tried to explain how much that ice must have hurt. She told me over and over that she would never do that again, something that I am sure they rehearsed with her at school, and in truth, I am not worried that she will do it again. There have been times since she started school that she has pushed, hit, punched someone and after being told not to do it, she has stopped but what about all the other things that no one has told her about yet??
Of course, when her teacher told me about what happened, I could not help the rush of images of Julia being kicked out of school. I know, a bit rash to make such a leap, but . . . .
Julia tells me now that she is scared of me, and she is worried about what I think when she does something wrong. I see her looking over at me when we are home and she is doing something wrong. She checks to see if I am watching. I think and oh so hope that this is the beginning of some kind of knowing the difference between right and wrong. Whether she learns the real meaning of right and wrong or can be instilled with a really strong mother voice inside her head, she needs to know . . . Argh!!
Okay, I know that lots of kids are physically aggressive with their peers. I just hope we survive childhood.
I am learning patience.
Julia came home today in another good mood; however, she had thrown a chunk of ice at a boy in his class, hitting him in the face and resulting in a cut under his eye. Even as her teacher was telling me about this, Julia was hugging me and asking to be forgiven. As I understand it, Julia threw the ice, which she called a snow ball and I am sure she doesn't really understand the difference, in response to an adult telling her to put the ice down. Oh, that is my Julia! Oy! How do I teach her about this??
I put her into my arms when we got home and I tried to explain how much that ice must have hurt. She told me over and over that she would never do that again, something that I am sure they rehearsed with her at school, and in truth, I am not worried that she will do it again. There have been times since she started school that she has pushed, hit, punched someone and after being told not to do it, she has stopped but what about all the other things that no one has told her about yet??
Of course, when her teacher told me about what happened, I could not help the rush of images of Julia being kicked out of school. I know, a bit rash to make such a leap, but . . . .
Julia tells me now that she is scared of me, and she is worried about what I think when she does something wrong. I see her looking over at me when we are home and she is doing something wrong. She checks to see if I am watching. I think and oh so hope that this is the beginning of some kind of knowing the difference between right and wrong. Whether she learns the real meaning of right and wrong or can be instilled with a really strong mother voice inside her head, she needs to know . . . Argh!!
Okay, I know that lots of kids are physically aggressive with their peers. I just hope we survive childhood.
05 January 2010
Julia had a better day at school today than she did yesterday. And she was in an incredibly good mood when she came home, worked with a therapist, ate dinner, read with me, watched tv, and went upstairs to bed with her dad. She is still talking very fast at night but her activity level has gone down. She is happier than she has been for awhile.
After supper we worked on reading. We have finished The Princess and the Frog book that we were working on, and so, we started reviewing all of our sight words and will be reading the books that we've worked on. I have been using this process for a long time now, but didn't really think that I had a process until very recently. It is a Suzuki-like procedure -- learning new pieces -- words and books in the case -- while keeping the old pieces active. Reading "More Speghetti, I Say" tonight, Julia enjoyed reading. It was not as hard for her to read as the new books we work on. She enjoyed the familiarity.
Cheshire suggested that we do more than just reading and include playing with words. I've felt at a loss for what to do that would interest Julia, but yesterday, I just plunged in with a new game the Robin sent (Thank you for that wonderful box of stuff, Robin. I am saving the dinos for Julia's birthday in two weeks!) and playing with words shapes So far I have no inspired interest, but I've only just begun. If I can teach Julia to enjoy a guessing game, I should be crowned queen!
After supper we worked on reading. We have finished The Princess and the Frog book that we were working on, and so, we started reviewing all of our sight words and will be reading the books that we've worked on. I have been using this process for a long time now, but didn't really think that I had a process until very recently. It is a Suzuki-like procedure -- learning new pieces -- words and books in the case -- while keeping the old pieces active. Reading "More Speghetti, I Say" tonight, Julia enjoyed reading. It was not as hard for her to read as the new books we work on. She enjoyed the familiarity.
Cheshire suggested that we do more than just reading and include playing with words. I've felt at a loss for what to do that would interest Julia, but yesterday, I just plunged in with a new game the Robin sent (Thank you for that wonderful box of stuff, Robin. I am saving the dinos for Julia's birthday in two weeks!) and playing with words shapes So far I have no inspired interest, but I've only just begun. If I can teach Julia to enjoy a guessing game, I should be crowned queen!
04 January 2010
The house is quiet for the first time in two weeks. Ah. How nice. It is taking me all morning to pick up the house. Even though I got the tree out of the house yesterday, there is a lot out of place and messy. Good cleanings are needed all round, but that needs to be put off for today.
Julia woke up when I turned on the light in our room this morning -- and she said she wanted to go back to sleep. The kid's clock is beginning to set to a later time which is great. Is this another bump down in vigilance? She was grumpy and did not want to go to school but it was not too hard to cajole her into dressing and getting ready. By the time she went downstairs, she was into breakfast and school.
I did the research on fish oil and stimulant and it seems that withdrawing the fish oil was a totally wrong call. I am going to double her dose which was the recommendation from two docs and hopefully it will not take too much time to get her back where she was. I do believe that it was mildly controlling her hyperactivity and impulsivety. Never enough to make fish oil the only thing she took for those behaviors, but now I wonder if some of what we think is the removal of the guanfacine, really the due to the removal of fish oil.
Thank goodness there are no blood tests for Julia's conditions, and double thank goodness that I do not have the ability and means to do them. I'd be testing her all the time!
Julia went into school without any trouble at all. She greeted everyone she met as she was going in and did what she needed to get ready for her day. Then she sat down and started working on her journal. Coming into the room before the rest of the class is very good for her.
Julia woke up when I turned on the light in our room this morning -- and she said she wanted to go back to sleep. The kid's clock is beginning to set to a later time which is great. Is this another bump down in vigilance? She was grumpy and did not want to go to school but it was not too hard to cajole her into dressing and getting ready. By the time she went downstairs, she was into breakfast and school.
I did the research on fish oil and stimulant and it seems that withdrawing the fish oil was a totally wrong call. I am going to double her dose which was the recommendation from two docs and hopefully it will not take too much time to get her back where she was. I do believe that it was mildly controlling her hyperactivity and impulsivety. Never enough to make fish oil the only thing she took for those behaviors, but now I wonder if some of what we think is the removal of the guanfacine, really the due to the removal of fish oil.
Thank goodness there are no blood tests for Julia's conditions, and double thank goodness that I do not have the ability and means to do them. I'd be testing her all the time!
Julia went into school without any trouble at all. She greeted everyone she met as she was going in and did what she needed to get ready for her day. Then she sat down and started working on her journal. Coming into the room before the rest of the class is very good for her.
03 January 2010
Many faces
Oh, I love taking pictures of Julia and I still have not learned to use the camera that I bought last summer. I use it as a point and shoot even though it is capable of so much more. Ditto with photo shop which I can fiddle with but don't know many of the features. And so here is another resolution -- to learn to use my toys this year.
I put away Christmas today. It was a sigh of a task. Julia protested but only for a very short moment. I protest too, but only for a moment. I love the way the house looks after the holiday season. Clean, clear, almost sleek in the house after the crowd of the tree and decorations. Time to clean and clear everything and then start again working on my bliss.
Ginny, Julia's teacher, called tonight to find out how our vacation was. It was great to be able to talk to her. I caught her up on Julia's reactions to the Adderall. Ginny told me that she was raising the bar for Julia with her writing. Julia usually writes one long sentence in her journal each morning. Ginny will now be asking her to write two sentences to begin her day. Ginny also told me that she was tested Julia on the 100 most common words and was very pleased with the result. She also said the Julia was pushing ahead in her reading.
We stopped giving Julia fish oil when we started the adderall. David was concerned that the fish oil might stop the med from being absorbed completely or would interact with the stimulant. I went along with this but I am now wondering if the fish oil helps Julia with concentration and attention. So, I will add fish oil and Julia's multi-vitamin back tomorrow.
01 January 2010
The beach
For so many years now, after the new year begins, we begin our plans to go to Florida to visit David's father and his wife. We have most of our meals with the grandparents and take some walks with them, and then have as much time as we can manage on the beach. I love the ocean; I love the beach, and I am so happy that Julia loves it as well.This year, no beach, at least not until David gets his new heart and heals.
But I am promising us a beach vacation.
But I am promising us a beach vacation.
Be the change . . .
The new year is in, and as arbitrary as our time keeping in, I am ready for the change. Each year I adopt a motto to use as my inspiration for the year. Sometimes I don't change the motto until March or July because I have not found a new one or because I just have more business with the old one. This morning a motto jumped out at me, from a post by a friend. It is almost or surely a cliche by now, and at the same time, it is humbling to take on a motto uttered by someone who lived what he talked about, but still it will be mine with all of its baggage for this year:
Be the change you want to see in the world.
-- Mahatma Gandhi
This is a great time for resolutions and maybe I will add them later. Right now, I set at my desk looking at a gray sky and a bright winter sun. It has not snowed in the last 24 hours and so I don't have to clean it up today -- snow at this time of year is worse than weeds in June! the bare trees and telephone wires slice and partition the sky into smaller irregular patches. No one is driving although it is past noon and the houses that I can see are dark and quiet.
Julia is playing with her leapster; David is napping. I put a host of dirty dishes in to the dishwasher . I have morning chores and a shower and then we are off to an open house hosted by David's theatre friends.
Now, there is a resolution -- to get involved with Madison theater to see if it still interests me.
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