pumpkins

Julia wanted to have happy pumpkins. We looked on the web for happy pumpkins to carve and we found the two faces that we did. Julia was very pleased with her choices and was excited to carve her smaller pumpkin. I have a feeling that next year she will tackle the biggest pumpkin that we find. She named the smaller pumpkin Lilly and the bigger one Burt.
I drool over blogs with beautiful pictures of things that the writer has made. I rare take pictures of food and don't make enough crafts to post, but pumpkin carving is something the is so much fun. Also, when I do take pictures, I don't usually set the stage. Thus, pictures are taken in the kitchen or on the table -- yeah, too many pictures of Julia in the kitchen. So I decided to be more conscience of such things. I love what the oranges of the pumpkin look like on our front steps with the almost finished vines and fallen leaves around them. Yeah, I set this stage. And I am very proud of my Leaf pumpkin. The skin of this pumpkin is probably too thick to allow the light to shine through but I think it looks great at least during the day!

Happy Halloween 2009!

This morning I wished Julia a Happy Halloween and she responded in kind without thinking much about it. Then, realizing what day this was, she said, "Let's eat candy!" Finally, Julia understands the holiday!

And just a note to me: no visible changes from the drug yet.

Friday

So the docs told me that Julia might be sleepy for a few days on this drug. She didn't seem so this morning, but are we drove home after food shopping, she napped in the car. When we arrived home, she curled up on the couch and "read" the cover of a DVD. This must be from the drug because Julia never relaxes like that.

We had such a sweet pleasant day Julia and I. We cleaned a little bit in the morning -- Julia straightening and putting away everything out of place in her room, I vacuumed. Then we fixed a book called Inredible Animals that is Cheshire's old book. The binding is shot and I had to tape most of the pages to keep it together. Julia loves this book and it may be time to replace it.

We did our pumpkin carving today -- never got to it yesterday. Julia did a very good job of cleaning out her pumpkin and help me carve. She did the drawing on her pumpkin and I bet by next year she will do all her own carving. The kid has a good eye.

David and I are going out tonight. Dinner. Alone. Together. How cool is that!

.5 mg

We did the ADHD evaluation yesterday and as we are in Madison and use University facilities, we had three docs working with us. I was grateful that one of them understood the results of living in an orphanage for five years before coming home. This was a blessing (I never used to use the word blessing so much. It has been rolling off my tongue lately.) Two of the docs wondered whether her PDD diagnosis was correct (Pdd v. delay in development cause by neglect), but we've always known that. They felt that her behavior suggested that ADHD could be part of Julia's challenges, and so prescribed medication. (One young, very earnest doc, patiently explained that I should consider what we are doing as giving medication, not drugs. I have to suggest but it sounded like he had been well school by drug manufacturers.)

Last night, we started Julia on .5 mg of Guanfacine. In a week, she will take .5 mg twice a day. We wait to see any change. None yet this morning, but none expected.

Julia did charm the three docs. She has that ability in spades. It is amazing. Of course, as she met each doctor, she made sure that they were not going to give her shots. She spent a good deal of time doing very impressive drawings, and at the end, gave a picture of a large cat to one of the docs, telling the docs that it was a picture of the doc. Julia has never done that before.

We have this four day weekend to start the medication.

More about David. He has had a heart condition that has been controlled by drugs, um . . . medication for a few years. Transplant was described as possible at some time in the future. We were shocked when the docs suggested that the time was now. Madison is a great place to be for a transplant as our heart team is very good. David has been very pleased with his care since he has been in Madison. We read the research and reports and expected that listing for a transplant meant a wait of six months to two years, but because of David's build and his blood type, his docs are saying that they may find a heart for him a lot quicker than the average. This is great but scary, but I can't imagine that any time would be easy. Now, I hope it is soon so that we can begin the journey after-transplant.

As for the why of David's condition, both his mother and her father had heart conditions which were responsible for their deaths in their 50's. There is no way to know if they had the same condition that David has, but the ability to figure this out did not exist then. We can only surmise.

I am sure it will happen at just the right time.

Leaves

"Would you want Rosa Parks to melt?" A faithful commenter asked after yesterday's post. Here is the inside of the onion, the pit of a peach, the core of parenting. I thought of this often as Cheshire grew up, and learned so many times that leaving as much of her native sense intact was the best parenting that I could do. I am less concerned about that this time around -- Julia is not so easily influenced. I am grateful that she is learning to depend on us and turns to us for praise and blame, but I am still making her inner mommy.

My Spicy Dragon has so much to learn and grow into. It is my job to keep her Rosa Parks safe and nurtured, but I don't think that I have to worry that it will melt away. Julia is her mighty self and she will someday call upon this to do good things and go wonderful places.

Another subplot of our lives creeping to center stage is that David will soon be listed to receive a heart transplant. Although he has been living with a heart condition for a few years and we knew that eventually a heart transplant might be in his future, we found out only 6 weeks ago that the future was now.

Frost

Yesterday afternoon, Julia found a spider web in the corner of our living room. This has been a big spider year -- I think the dry weather in September has a lot to do with the numbers of spiders available to slip into a house and establish a healthy web in some unkempt corner, that is, our living room.

What Julia found was a spider who had caught a ladybug in the web. She observed it several times yesterday afternoon and evening. I realized that what I know about spiders is mainly from cartoons! From what we could see, the ladybug struggled to get out, the spider wrapped the ladybug in web filament and then waited for the ladybug to die. Some of this is supposition. This morning the spider was still there but the ladybug was gone. I promised Julia to check the floor when I do my cleaning this morning.

Oooo, it is chilly. We had to scrape frost off the car this morning. It is getting onto the end of October. Julia ran outside without a coat to see what I was doing. She retreated quickly and put on her winter jacket, her hat, her hood, and her gloves. This girl is learning about Wisconsin winters.

This morning I heard Julia ask David a question, she was cooperative about getting dressed, having breakfast and using our new Sonicare toothbrush -- something we've all have to get use to and I am pleased the Julia can handle the tickling and the buzzing sound. It was all easy to get to school and she walked blithely in with my promise to pick her up after school. It is better than last year, and the resistance that I fear so much in her is melting a little bit. Good to recognize that today.

This morning I was at Julia's school from 8 until noon with the executive board of PTO to discuss and then recommend which proposed grants to fund, and then I was back at 1 for our parent teacher meeting.

Draining and exhausting, but it is living out loud.

The PTO meeting was hard. We needed to discuss core values, changes in our working paradigm, and which requests to refuse outright. Just a few years ago, I hear there was money for all of the grant requests -- some of things we would not have even considered now. For the past two years, grant requests have way out paced the fund we set aside for grants. And so many of the requests are for things like books, new programs, and sub pay, that would have been funded with the school's budget. We are a lucky school that we have a means of supporting programs that have been cut, and I believe that the people that I sat down with today care so very deeply about all of our children.

Our parent-teacher meeting did not yield any surprises. It never did with Cheshire (except for once). Julia chugs along slowly, held back by resistant and angry behavior. Her behavior during the conference was a case in point. Where she is fully capable of amusing herself in a classroom full of books and places to draw, she whined, cried, demanded, and refused every idea for her. We were saved by another teacher who took Julia into her room to amuse her while David and I talked to Julia's two teachers.

Prior to this, there has always been talk about how far Julia had come and what the expectations for the rest of the year were. I asked about that today at the end of our conference as if it was just a forgotten piece of the discussion. There are no more projections. It is not that there are not expectations of Julia and not that those involved with her education are content to leave her anywhere. Instead, I see teachers who are using every strategy they can muster to get Julia interested, accommodate her interests, and move her forward, but Julia's development and Julia's learning are not, for the foreseeable future at least, and maybe always, within the normal range in any way. Julia is moving ahead in reading -- from level one to level two so far this year and I believe, she was get a good deal further this year -- 10 or 12? But kids in first grade get to about level 20. Math is still numbers and she is still confused when she gets to the teens. She is doing rudimentary addition, but only on good days and only very concretely.

There is evidence that her social interactions are maturing. She is not able to be civil to Aaron, who she had such a hard time getting along last year. Ginny talked about how Julia had talked to Aaron and asked him for things when they meet. There are two other kids in Julia's class who have taken a liking to her and the teachers encouraged me to cultivate those friendships. Those friendships, and the few others that she has will be a very necessary bridge for her. They will start creating a community for her as she moves through school.

We talked about ADHD drugs, and the teachers gave us their opinions -- that it might help, that it usually takes time to find the most effective drug, the most effective dose, and the right balance of drug and side effects, that it might be a part of a solution. They emphasized that there is no magic pill. Here's what I want some drug to do -- I want it to help Julia center herself and stay on task enough that she can concentrate to the degree that will let her advance in her reading, understand numbers, and be able to take instruction in art.

I am sober and tired tonight but not discouraged or depressed. Julia has a path ahead of her that we cannot see at all. Maybe this is what all parents of kids with cognitive challenges learn -- that path is not ours, that the path is strange to us, but makes sense to our children. And I am wild, crazy in love with this child.

Finally! It is going to be a sunny day today. Time to change the screens to storms and do some raking and cleaning of the garden.

Julia is very happy as a brown bat again this morning for the church parade. I had to take more pictures of her before raking. The leaves are just luscious -- and no one should ever let me buy property in the fall. Everything is lovely! We've had the wonderful gold yellow leaves of what ever tree it is filtering light all week. If I could bottle that light, I would make the world happy all year. Now, those leaves are above our heads and below our feet and in another week they will be gone. The sense of being in the moment is so intense and the master teachers are so present. Learning in the moment continues.

Later, I went to Julia's church class today because I was the snack parent -- bringing bananas, rice cakes, and peanutbutter which was not really appreciated. I think this is a much more sugared class. Or just kids hoping for sugar snacks. But back to task, I sat through the class and almost jumped out of my skin. BORING! OMG, this is what I am expecting Julia to have good behavior during? When I asked Erin, Julia's aide during the class, if all of the classes were like this, she said, "The other kids are bored too." This is a very nice young woman.

Oh, how disappointing this is. Last year, when I was part of the teaching team, we really worked hard to make out lessons interesting and very child friendly. We didn't succeed all the time, but it was inspiring to work with the team because each one of us was working hard. And I know, it is a matter of luck as to what class a kid goes to and what the volunteer teacher does. BUT, but, but this is supposed to be a great year. The theme of the year is holidays and holydays, and the kids are supposed to explore the feast days of many religions. Granted there was no holiday for today and the task was to teach about the first two principles of UUism. The teacher had her small class sitting for almost 45 minutes as she read and lectured. These kids are in second and third grade. The class would have been boring to . . . . okay, enough complaining. I wonder what I can do. Is this a chance for Julia to learn about boring lectures? I don't know how much she learns about UUism from any class but she will learning nothing here.

Okay, more complaining. The first two principles are about compassion and doing unto others. The teacher read what the teacher's guide said about these principles and then asked for examples. One of the kids brought up dealing with a kid who kicks you during a socer game. This is was not a bad example and it was talked through, but it seemed like the only one that the teacher thought was valuable. As a grownup guest, I brought up when a person who has had an awful day does something to hurt and that a question or a kind word could help change that person's day. The kids thought of a few examples of that and then the teacher went back to sports! Isn't that the easiest place to turn the other cheek. I mean, a kick while you are in a swim meet is usually accidental. That is not hard to forgive. At least, for me.

Funny, that the workshop leader from yesterday was giving a sermon about making lessons accessible for all children today in the pulpit. Where does boring fit into multiple intelligence, and different learners fit into boring?

Franklin School has spoiled me. (not to mention so much of Cheshire's education) I expect excellence and hard work from teachers. Getting off my high horse, it is sobering to see someone teach badly. I am sure many kids experience that every day at school. We are so fortunate to have such dedicated, kind, caring and smart teachers. People who try to understand and extend themselves further when the going gets tough. Stacy, the friend I visited yesterday, was telling me about her IEP meeting. She said she did a lot of nodding and saying yes, and she was shocked that they were giving B more than she was even going to ask for. That has been our experience as well. And that is why it is so worth it to me to work so hard for PTO and our snack group. I do nothing more than I see done for my child.

David and I put up storm windows this afternoon while Julia was in therapy. Some times it is so hard for us to work together! We tussle like silly kids. We did get it done and the house is cosy tonight. I have to make a few sand-filled snakes to go by doors. We've needed them and I haven't found anything that I like. But we have sand and after the bat costume, I am itching to sew more.

And Julia now wants Barbie dolls. She has been playing with her prize Hannah Montana and yesterday, one of our therapists brought over her Barbies and the two of them played. We'll see if she is still interested by Christmas time. And just maybe, it will mean some doll clothes for me to sew.

I did more garden cleaning in the yard today. Oh, I have been such a lousy gardener this year. The garden is forgiving, however, and I am very grateful. I still have more to do and I ordered spring bulbs that should be coming in another week or so. I will try to redeem myself next spring and summer. I have not found garden divas here, and I don't know whether leaving the garden to itself this year was an invitation for them to move in or a show of neglect. As I prune, pull, and dig up, I whisper to them. Come sweet little beings and make this a magical place.

I have to post more bat pictures! That kid is so darn cute.

I have been all thought and no writing.

Julia has had a few good days at school and at home as well with her therapists. She is eating a lot. She is talking a mile a minute.

I went to a workshop this morning about including children with labels in a religious community and the talk centered on religious education.

This afternoon, Julia and I went visiting. Julia had a good time playing with the children -- a girl her own age and a little boy who is three. Another six year old boy is in Julia class and is classically autistic. I have seen him at school but at home he was much more interactive and comfortable. The mom is a wonder.

Two days ago I called Julia's doctor and asked to talk to her about getting Julia a screening for ADHD. If there is a chance that some of Julia's behavior could be addressed with medication, we need to find that out.

Julia managed all smiles on her behavior chart today, but Ginny said she was very distracted even when they were in the classroom alone. Julia reported that she didn't yell or hit anyone today.

I had some phone time today and a lot of errands. I spoke with the Bloomfield house's insurance company, our RE agent, and the contractor who will do the work. The contractor is now in the delineation phase of the work after finding oil contamination on the neighbor's property and in our ground water. We are still months from digging up the bad dirt but we are moving along. The insurance guy, who is very nice by the way, estimated that we will probably be able to put the house on the market again in 7 months. April, May? Should be nice weather, at least.

Tuesday

Julia had another day of challenging behavior in school. Yesterday, she ate her lunch in the Principal's office after a very long tantrum, and today, she visited the office again. Bad behavior in the morning at school during the time when she is suppose to be working one on one with Ginny is starting to be the norm of the days. It is true that she had nitrous oxide before she went to school, but that was not an issue today.

This evening at home, Julia and I reviewed all of the sight words that we have worked on. She knew more than two thirds of our words, and she is doing a great job of sounding out the beginnings of words that she doesn't know. We also started to read Two Crazy Pigs, our next reading book. She was focused enough to get through about 8 pages and was content to keep going even when there were lots of new words. She is recognizing words that we've worked on before.

Now, what to do about this school behavior!

Monday

Julia had a tough day today. I have no idea how many times I write that in contrast to the great day posts. Maybe at some point I will go back and chart my unscientific reports.

The day started with an attempt to take out an extra tooth that is lodged over one of her front teeth. We visited an oral surgeon who does not specialize in kids' work and he tried to treat Julia as he would have treated me. She gave her nitrous oxide to relax her and then announced that he was going to give her only one shot. At that point no amount of nitrous oxide would relax her enough to take that shot. She was scared and she refused. The oral surgeon decided not to go on today and to remove her extra tooth in the hospital as an outpatient.

We need preapprove from our insurance for that, and so, it will be weeks before it gets done.

I bought Julia to school after the visit to the dentist, and she did not have a good day there. Lots of noise, crumbling of papers, refusal to do work.

No explanation offered, but when I asked her about it, she told me everything.

She was distracted during OT today. Annie gave us some exercises with a big ball that I will get the line therapists to do with her. Julia also met a new speech therapists. Kara worked with Julia and asked her questions. Julia did two pieces of work that were a step forward. She did an exercise sheet where she had to cut out petals and then matched them to the question on a flower. She was able to sustain the entire exercise and she knew what she was doing.

She also played a dot game -- jumping from one colored dot to another in a pattern that Annie has written on a piece of paper.

My little brown bat

Julia was being serious and closing her wings for this picture. I love her sincere face.
Julia love these wings. And this is just her first opportunity to fly.

Not exactly a prayer

I have been feeling so sorry for myself lately. I can drag myself out of it. Of course, I can. But couldn't there just be a pill?? I would really like it if life suddenly got a lot easier!

Stella Luna

My little brown bat enjoyed seeing a theater production of Stella Luna on Saturday morning and then the Fall Dance at her school last night. She managed to run around, dance, and eat plenty of popcorn at the dance. She and David stayed at the dance until one of Julia's wings became detatched from the sleve. The fixing is not big deal at all, and this was a different reason for leaving than the last two years when Julia had to leave because of over stimulation.

I worked hard at the dance -- setting up and cleaning up, judging contests (how does one do that?), and getting in some dancing as well. It made me sad to see that Julia does not really get dancing with another person yet. I want that for her but cannot make it happen. I was struck by how much Julia is missing from what I consider a childhood. I remind myself that she has to have her own version, her own process, and I am here to support and enjoy it. She does understand Halloween, maybe dancing will come.

nature v. nurture

That child can make me laugh!

Last week, Julia came to me after being in the bathroom with a New Yorker magazine. She pointed to one of the comics and explained what it meant. She found it very funny, at least in her version. And actually, the caption put on the cartoon was not very good, IMHO; Julia's was a lot better.

This morning, after coffee and a scone with another power mom (really a very cool person) (and yes, this was a violation of my diet, but hell, I deserve it), I came home and went to the bathroom and there on the floor conspicuously placed on the floor in front of the toilet were two of Julia's books -- she was reading on the toilet when I wanted her to hurry up get to school on time.

This really makes me wonder about nature v. nurture - I mean, this is exactly like the rest of the family! Has Julia learned this from us?

I have been on the phone for two days trying to get appointments with the medical caregivers that I was referred to by the integrative medicine doc. When I called the doc in Sun Prairie who was supposed to be into integrative care for autism, I was told that he was not taking new patients. I am sure I sounded like I was going to cry (just stress, and not really about that doc) which may or may not have been good for a new relationship, but the receptionist took my message about Julia and my search for the right doc for her. I got a call back this morning from the doc's nurse that the doc would take Julia as a patient for primary care but would refer me to someone who I wanted to get to see for specific autism treatment. This and the cranial sacral OT who I have been referred to seems to put me exactly where I want to be! After a rough week, there seems to be an angel catching me, us. Yeah.

My task today -- the making of a brown bat costume.

After talking to our attachment therapist, chatting with Cheshire, and a good dinner with David and Julia, I have some extra loops of rope and no longer am I at the end of it.

Time to hit the pillow.

The rope is very thin and oh boy, I am at the end.

That's what it feels like right now.

Julia's behavior is not good these days. More hitting and more resistance to any idea that is not her own. This is tough on teachers and therapists. I have been too overwhelmed to really get back into brushing and music therapy as I wanted to last week. I have not implemented any of the suggested from the intergratred medicine doc. Two days ago, I know, but I have not done the easy stuff which I already have access to.

Maybe I am being to hard on myself and on us.

Julia's speech is disintergrating right now -- more stuttering, more fillers, more sentences that don't make sense. This is usually the sign that she will experience some leap forward. Boy, we could use it.

The general stress in the house is high, something that I will explain very soon. And poor Julia is feeling the effects. I have to say that every provider that we have ever contacted as said something about making sure the David and I take time for ourselves, respite, play. I always felt that I didn't need this sort of help, that we could handle it all by ourselves. Now, I need it. And if nothing else but for Julia's well being, I better see about it.

Painting fingers and toes

Last week, one of our therapists tried to paint Julia's fingers and toes. It was mildly successful, but I think it lasted much too long, and she really didn't like the way her fingers and toes felt afterwards. The toes did not last the therapy session. The fingers lasted a few days but were gone with the next bath. I think we will wait a bit before we try that again.

However, while it was being done, Julia had a wonderful time!

smile for mum

My girl is learning to please. She is not good at posing for pictures. It doesn't come naturally. I am not necessarily a good photographer. I know Julia has tried to please me when I want to take pictures of her. She use to give me this funny toothy grin that was very forced when I asked her to smile. She realized that it did not please me, and is not trying again, to find the right face. Also, she do not really pause when she looks at the camera. It is hard to catch her looking. But she is working at it. All the time.

Notes

What an incredible day!

And I need to go to bed. Still, just a few notes.

Julia went to the dentist this morning to get her first filling. One of her bottom eye teeth has come in and is a bad/weak tooth. She had nitrous oxide and a shot of Novocaine, and was able to be very cooperative with the dentist.

We also went to the integrated medicine clinic, and although I was not too hopeful when I made the appointment, we met a very interesting doctor who knew what I was talking about when I asked for a biomedical approach. He have me some recommendations for filtered water, vitamins and supplements, and two referrals. One to a cranial sacral practitioner and another to a doctor the next town over who does heavy metal testing and other procedures for kids on the spectrum. I heaved a great sigh of relief as I left the office. I had persevered with the appointment on a whim, deciding that I needed to do it if I was going to fight for a medical practitioner who could guide us in a biomedical path. And here was someone who was ready to do just that.

I brought Julia to school after her appointments and she had a very good day. I try not to have many appointments in the morning and then to bring Julia to school because during the last two years she had reacted very badly under those circumstances. I was very happy to hear that she managed to work during the rest of the day.

Finally, about me. At the beginning of the year, I took on the motto of Clarity, searching for clarity in my life, about my life, and my day-to-day. I thought on the term, I meditated, and then mid year felt I needed to change this motto to giving myself away. Tonight, after a tough but incredible PTO meeting where a number of hard issues were discussed and some good decisions made, I felt that I was living the motto that I adopted. Although I have been adopting mottoes each year for a number of years now, I found that it was usually 18 months between my adoption and when the idea would begin to bear fruit. This year has been different. Tonight, I am close to myself. This is not easy but it is now.

Playdates

I like this picture. Julia is giving me her smile-for-mom look and Rowan is hanging on. You have to hang on if you want to be Julia's friend right now. I think that will change. I hope it will. And in this instance, Rowan and Julia both have their socializing issues but they are happy to see eachother in the playground and Rowan likes coming over. I thought nothing of playdates when Cheshire was a little one. Of course, there was Lizzie who was the child from hell, didn't listen to anyone except her nanny and pulled down our Christmas tree twice, and then Lauren who was Cheshire's first best friend and had as much stubborness built in as Cheshire. There were times one or the other one was driven home angry as all get out, but they were fast friends. Cheshire was 3-4 when all that started, and Julia is 8, almost 9, but the lessons are pretty similar.

Crying

Julia had a melt down towards the end of her therapy session this morning. Ellen, her therapist, had painted her finger nails and then her toe nails. All of this was at Julia's request but she did have to sit quietly and very still for a long time. I am not sure why but she wanted her toe nail polish taken off and when Ellen tried to convince her to wait until it dried, Julia started getting upset. She melted like butter in the sun and was yelling, crying, and being generally disagreeable. Ellen put her on a step, and then when Julia calmed down a little bit, I took her in my arms. I held her for a long time and she started raging again, but once she stopped with all the anger, she started crying. Julia has not cried much in the last three years except as a result of anger. This started out as anger and then dissolved into another kind of tears. Very sad tears.

I have often thought that when the tears start, we have floods. I wonder if this is going to begin.

Julia took a long time to calm down, then ate a healthy bowl of rice and some tuna fish, and then we went shopping for Daddy's jacket.

Saturday morning

Traci comments that I should not be surprised to find out that I am the wise woman. Oh, the quality of wisdom bar has been lowered. Or I am looking at wisdom from the other end.

When you are not educated, all you have left is belief (and I am not talking about religion here at all). I labored under the belief for a long time that if I found the right medical expert that I could get some answers. Now, I do continue to search for the person/people. I have to say that the closest that I have found in the autism realm is Kenneth Bock who wrote the book that I talked about previously. But there are those who call him a charlatan and a fraud, there are those who say that any biomedical approach is a waste of time, those who absolutely don't believe drugs help at all -- I am looking for someone who has looked at it all and can talk about it in an unbiased way. I am needing a good judge, a mediator -- not a very medical person at all.

Does it sound like I go kicking and screaming into knowledge? Am I the reluctant wise woman? Am I the judge who knows how little I know?

Just got off the phone with Debbie, our senior therapist, who was going to come this morning to be with a line therapist who has not used the new goals yet. Debbie is sick and cannot come. When I got off the phone, Julia asked if Debbie was sick and if she hurt. Julia has resumed wanting to know more about the world around her. And dare I say, empathy!?

We talked last night about a schedule for today. It includes therapy, shopping for a new jacket for Daddy and a toy for her good work this week, and then dinner with a friend. Julia remembered all of it this morning. I know the getting a toy for good work is quite an incentive to remember the rest, but she still remembered!

Friday notes

I don't have the ambition to put much down tonight. Not exactly wordless, but finding it hard to put nouns next to verbs. So, snips:

Thanks for the comments. Good to have readers, good to read closely. I am looking closely.

In the fairy tale of our story, I am looking for the old wise woman who lives in the forest. The woman who is trustworthy. The woman who really knows more than I do.

Marilyn said that parents of complicated kids have to be the experts. Yeah, yeah, yeah.

Julia had a play date today without a line therapist (because the line therapist cancelled -- first time, and a bit weird). She and Rowen really played together for awhile without supervision. There was also some parallel play and some play in different rooms, probably more that 7 and 8 year olds should have, but there were parts that just looked like two kids playing.

Julia showed me a snap shot book and talked about her room in China and when she first came home. I think we are ready for a life book. That would be a nice Christmas present.

Our school snack program has been funded! So the kids in Franklin Elementary School will have fresh fruits or vegies once a week for their snack at school. We had a friday flyer going home in backpack mail, an email on the listserv, and a short article in the newsletter and enough parents responded to fund the year. This is a shift in the culture -- food for our kids is now a real issue.

In my mommy's arms

I am in a quandary and about what else but Julia's treatment.

David is pushing for drug therapy -- to try and see what happens, to get a bigger and quicker result. I am wary of drugs, and would like to go the more natural way -- diet, supplements, and cleaning out her system. I can agree with Dr. Kenneth Bock (Healing the New Childhood Epidemics) and use medication as a part of a healing program, but . . . Everything about the treatment of autism is unclear. No one really knows anything, and although there are a lot of possibilities out there, nothing but the most conservative treatment is approved of, and I don't hear raves about that most conservative of treatments.

Julia has come a long way without pharmaceuticals, but it is slow progress with modalities that are supposed to help but not cure. Are we wasting her childhood with this slow progress? Will any drug make the process any quicker? Will it steady her mind? Will it give her a childhood and a chance to grow up? Do I have to just subject her to treatment modalities without any assurances at all?

Unfortunately, the research about our health plan and what is/will be covered indicates that using of pharmaceuticals would be considered pretty radical. I'm sure we can get them, but I am also sure the insurance code would be written as something other than autism, like ADHD or depression or aggression, because "there is no recommended medications for autism." Nothing as radical as diet and supplements are approved and thus, no help with these can be covered.

And then, I wonder, assuming that drugs are so effective, why didn't our primary care physician ask us about them? Why do we have to ask her? I mean, when I went for my physical and my blood pressure was higher than normal, she didn't just note it, she told me about life style changes, weight loss, and wrote me out a prescription. I did not have to ask if there were any treatments for high blood pressure. Why should Julia's autism be any different?

Last night, I was reading one of our teaching books about being afraid. At the end I asked Julia if there was anywhere that she felt safe and warm. And she said, "Yes, in my mommy's arms." I see signs every day that she is feeling safe with us, and I don't want to squander this feeling of safety that we have worked so hard for.

Home on Monday

The nose is running, the coughs are wracking the little chest -- Julia is staying home. She slept until 7:30 and those three were reason enough to keep her home, but now how to I keep her quiet. I wonder if one day Julia will heal enough to be able to take a nap during the day and relax when she needs to. Right now, she is captured by Bill Nye the science guy on PBS who is talking about volcanos. She loves the idea of lava - Someday, we will take her to Costa Rica to see a volcano up close and walk on some cooled lava.

A little later: We have cancelled everything for the day! The folks at Middleton Rehab where Julia goes for OT said that if she came in, she'd have to wear a mask and they preferred she did not come. So, I cancelled. And then, on to our intensive therapy, and decided to cancel there as well. So, we are inside and not doing much at all on a sunny day. Hopefully, I will get my project cap in gear and we'll have some fun this afternoon.

Still later: Julia and I did a bit of house work. For her it was cleaning up toys. No easy task. She put away the puzzles she has worked on over the past weekend, and did not complain about taking them apart which surprised me. She finally understands how I have divided her toys and how my bin system works. Of course, I set it up after watching what she played with -- so certain cars and trucks go into the animal bin because those vehicles are always part of the jungle.

We we are finished with cleaning, and reading, and now on to some miso soup and apples and a movie. I am hoping that she lays down and dozes.

And again later, David is home and putting Julia to bed. She is feeling better and should go school tomorrow. I am feeling worse. Uch! Nose is stuffed, throat is raw, whole body aches. Oh, I hope this is a cold. One more PTO email to work on and then to bed for me.

So far on Monday.

Tire jumping

Yesterday, the pumpkin patch had lots of simple activities for kids and because it wasn't very crowded, Julia was able to take her time and play as she wanted to. The was a "tire playground" and Julia became very interested in jumping from the middle of one tire to the next. This is such a little think but I have not seen her challenge herself physically in a way that was like this. I tried to catch her in the air and oh, I guess I have to learn something about my wonderful camera. I know I have a feature that allows for continuous photos but I am just too lazy to figure it out. Anyway, here are my best attempts. Julia was very pleased with herself for finishing the two lines of tires.

Sunday

Last night, as a treat we had take out chinese food and potato chips. We rarely buy chips other than unsalted corn chips. This morning when I making pankakes and cleaning up from last night, I read the ingredients on the chip bag and those chips contained Milk! I wonder if the upset stomachs and unhappy poops that both Julia and I had this morning have something to do with the milk, or was it the Chinese food?

Julia has a cold -- coughing and runny nose. In other years, I'd think nothing of trying to medicate her a bit and taking her to church, but this year, I wonder if that is appropriate? At the morning greeting at church, we are told to greet people as we feel is safe and appropriate. Antibacterial gell appears in the most unlikely places.

Pumpkins today

Julia and I visited a pumpkin patch this afternoon. The day was rainy and damp but this was the perfect weekend to go and it turned out to be good timing. Rain fell earlier in the day so the ground was muddy, but the clouds held tight for our entire visit. The rainy day meant fewer people and fewer lines, and more space for running around. If I remember correctly, when we've visited this pumpkin patch in previous years, there has been frost before our visit and pumpking were easy to find. Today, we had to walk into weeds as tall as Julia and hunt around to find pumpkins. It was fun! And Julia liked it more this year than last year and the year before. She was challenged penetrating the weeds but was good at looking for pumpkins and claiming her own. She was not crazy about carrying the dirty pumpkin to the wagon. She also didn't like the stem that was prickly, but she managed.

After we picked our pumpkins, we went to have a snack. There was not much that Julia could have (including the free ice cream. Such a shame!), but she had a hot dog and some chips. She wanted to have the hot dog in a bun, but I explained that I did not want her to eat the bun because it was not good for her thinking. She agreed to eat the hot dog plain. I don't think that Julia really understood that the gluten free diet is helping her, but I do think that she trusted me and took my direction without question. Julia trusts me! Julia trusts!

Friday, Friday, Friday

For Julia, today was no where near as tough as yesterday.


For me, the day didn't get better until Julia came home from school and started interacting with one of the line therapists. During the day, I was feeling pretty puny, like all the air was sucked out of my lungs, like my world had tumbled down again. I have felt this way whenever Julia has taken steps backwards. So I was a mess today, worrying like crazy, wondering what I would do if the behavior continued. What about school? How would we ever get past the kindergarten and first grade work she is doing now?


So quietly, I had my own melt down.


I picked Julia up from school and she was a different kid. Her day was not perfect -- she fought with Ginny about keeping the toy she brought with her instead of in her locker. This used to happen last year and as a result she was never allowed to bring toys to school. This year, she has been allowed to bring small toys that she can bring out at choice time to show other kids or to play. She has been pretty good about keeping the toy in her backpack or locker but today she could not do it. I think, if Julia is in a good place on Monday, I am going to tell her that she cannot bring anything extra to school for three days until she can remember that the toy cannot be taken out until choice time. She would have learned from that two weeks ago. I hope she can learn next week.


After the toy incident, Julia had a good day, and was able to talk to me about the day as we walked home, including telling me that she was angry at Ginny at the beginning of the day. When Ellen, our line therapist of the day, came over, she joined Julia's play and then they moved from activity to activity, many, many of which were Ellen's choice. Julia put together two puzzles in record time, she stopped playing with her little pets when Ellen said it was time to play with clay. When Ellen was finished and said good bye, I told Julia that she was going to have a bath before we ate dinner. She went right upstairs.

Tonight putting Julia to bed, she was asleep in 20 minutes. Yesterday, she was a whirling dirvish in bed and she took so long that I fell asleep before she did.

I thought about all of the reasons that could have influenced a little bit or a lot the behavior that we have been seeing and the list is, well, here it is:

1. we are in the 7th week of the GFCF diet and withdrawal from gluten takes 3 months.
2. the weather has changed very quickly and there were a number of inside recesses this week and lots of kids were in antsy moods.
3. she has been taking a different fish oil pill for the last two weeks.
4. class work has gotten more serious in the last week, and yesterday, her tantrum seemed to follow two suggestions that she do some new work which she told me she was afraid of. I think that means that she did not understand it.
5. we have been eating much more corn, and corn is another possble alergen.
6. David is gone for this weekend and was away from home for 5 days two weeks ago.

I feel a little punch drunk as I write this, but it is with the knowledge that Julia is fragile and change, change that I am not constantly aware of, can tip her sensitive balance. So I am not just challenged to help heal Julia but also to help make her being a lot stronger.

Julia had a tough time in school today. For the first time this year, she tantrumed. Yes, I am turning nouns into verbs, but Julia's tantrums are such action words. From what I hear she managed to yell, stomp and scream for 20 minutes, and it seems to be connected with a new kind of work that the kids are assigned. I will find out about this work.

But truth be told, Julia has been inching towards tantrums all week, probably more like two weeks. Her behavior during OT this week was not good, she has been tough on her line therapists, and today, she spent almost a half hour in my arms, yelling, trying to cry. And tonight, going to bed, she was really fidgety and had a really hard time finding peace to fall asleep.

Someone on a GFCF yahoo board suggested tht I look at other foods, including soy and corn. Ach! But we have been eating more corn. I think that our soy has remained about the same and is pretty moderate at that.

Oh, I am tired. Time for bed.

An anonymous commenter of yesterday's post advised me that I should do everything in my power to make Julia as close to normal as I can. Thank you for the advice, my friend. That is the premise that I work under all of the time.

When I talk about the Julia and a different path, a path apart from the normal child (if there is such a thing), I certainly do not mean the I would allow her to go on with the behaviors that she has without investigating every known therapy or treatment known to man. I haven't gotten down to faith healers and witch doctors, but you know, if they worked . . . .

I am scared of pharmaceuticals. I have read a good deal about kids who start with one drug and then collect many more as the side effects of the first drug bring on behaviors that are then quelled by second, third, and fourth drugs. I don't want drugs to put my kid to sleep, wake her up, make her eat, and so on. I would need an awful lot of convincing that a life of drugs is worth a bit of attention that she might gain. I am scared of doctors who pull our their prescription pads right after they shake your hand. There have been untold numbers of folks who have told me that every kid with autism is different -- and there are days when I don't think that autism is the best description of her behavior, because after all, the diagnosis is just that. There were not blood tests, body scans or xray done to put this label on Julia. A doctor looked at her behavior, listened to her history and made a guess. He might have said ADHD, her might have said post-traumatic stress.

Now, the autism diagnosis has gotten us a lot of help and for that I am grateful, but when we talk about drugs, I want reasoning and some way of evaluation. I admit that I am still looking for how to get that.

But I have no fear of science, and we have just begun.