Jonah and I went to a party today, a birthday party just for three or four year old little boys. It was sweet and charming and I was glad to go. Sadie went with Daddy to a gig in Stratton Mt Vt where they got to listen to Harry Potter and talk about stuff the whole ride. Nora played outside most of the day and Molly came home from her adventures in Maine and now is playing with her new toy a shiny yellow laptop.
I am in the zone. I made a commitment to myself this week that I need to take better care of myself, go to bed earlier, eat better and exercise more. There is not surprise in the fact that of course this makes me feel better and the family flow better and life move on in a happy more satisfying way. I am thankful for the willingness to arrive here this week, before New Years Day, before the hype of quitting things and getting it together.
While I was at the party with Jonah today I had the pleasure to be with him and see him in his boyness and his way. He is a shy boy and so it usually takes him a little time to warm up but that is ok and he is a child who does not play all the games, some, like pin the tail on the donkey he will not play because of his vision, but others he will not play because he doesn't want to.
That's ok, I like that about my kids. They are generally friendly and good natured but they won't do something they don't want to.
Sometimes this is tricky. For example, sometimes I would like Sadie to get it in gear and get on my agenda and then unschooling is more challenging. I try and remember that these are moments for her in a whole spectrum of time and space. I try and remember my most independent child and how she is turning out and I couldn't be more impressed and in awe of her these days.

Vision

When I was in the tenth grade I dissected a cow's eyeball. I remember this event very well because my partner was John Daughterty, a boy I had an on and off again love affair with all through high school. The only thing I remember about the eye itself is the way that it looked as it went flying threw the air when he threw it at me during a quarrel. I don't remember anything about the mechanics of vision or the organ itself. I couldn't tell you how we came to, as a group of beings, process all this information that comes through these windows to the world.
When Jonah was diagnosed with severe myopia at age 13 months, I remember the tears falling from my eyes and the way that my daughters looked solemnly at me and the look on Jonah's face of which I came to recognize as his "without glasses" face.
After two years I am still grappling with this. We have a ophthalmologist, who we see regularly. We had early intervention services, and services through Perkins School for the Blind. He is followed by doctors at the Low Vision Clinic at Perkins and now will be receiving help from the Carroll Center for the Blind and Visually Impaired. The course of his vision issues has been an interesting one for me on all different levels. I have periods of time where I think that he will be a little boy who needs thick glasses and that will be that and then I have periods of time where I am so worried about him and confused. I am still learning. I know more about the eye today than I ever learned in school. I understand how it works. I understand that Jonah has an elongated eyeball and that his retina has very low pigment and that he is at a higher risk for retina detachment. I understand what that means, that he could just eventually lose pieces of the picture, spots in his world. I understand that myopia tends to get worse with age and that he could lose more of his already preciously small amount of vision and this makes me worried.
I understand all of these things but lately I have been thinking emotionally, spiritually about what they mean to me and how I make sense of them and it makes me quite sad.
Jonah had an IEP meeting last week at the Gloucester Preschool. It is supposed to be one of the best around, especially for special needs children but when Gary and I visited it in the fall, I knew I could not send Jonah there. I knew that Jonah would be a homeschool kid too. We continued through the process however because I do want the help from the Carroll Center and this is the only way I can get it.
So I had to sit through the meeting, all three hours of it. For the most part it was fine. I understand what schools need to do and the way that administrators and teachers think about things like this. What surprised me most were some of the things that the woman from the Carroll Center was reporting. Jonah will not be able to drive a car ever. For some reason this makes me so sad, this loss of independence, this loss of a rite of passage in our country. Jonah is not seeing that well even with his glasses and could possibly benefit from a cane someday.
So I have spent the weekend looking for more information. I checked out the few books that there are on vision impairments. One in particular has been very helpful entitled, "Children with Visual Impairments, a Parents Guide, " by M Cay Holbrook.
Last night we were finishing up our Christmas shopping and I was in a huge Barnes and Nobles. I was searching for a book for Jonah for Christmas that featured a child with glasses. I wasn't looking for Arthur or Magenta gets her new glasses or something like that because Jonah doesn't have typical glasses like those characters. I was looking for a book that captured his experience, his reliance on his other senses, his fear in the dark, his perception of the world. I asked around. The friendly woman brought me over to the Special Needs section where they had a billion books on autism but not one on visual impairment, nothing. They had a book on vision with autistic children but not just plain old vision. The woman told me I should write one. Normally this type of thing would roll right off of me but last night it made me feel incredibly alone. I feel alone in my choice of schooling, and alone with this child who is not blind and yet has a serious condition. I can't go to the schools about it because I don't have any faith in their ability to help and I have lost faith in his ophthalmologist who did not explain his condition enough to me because he was afraid, I am sure of hurting my heart even more.
Jonah is in the bath with Nora, his little buddy. They are playing Santa Claus face with the bubbles in the bath and some game that involves farting in the bath. The kitty is sleeping behind me and Sadie is hanging out with Myrtle. Gary is lugging in all the Christmas stuff and Molly is still sleeping. Two more days until Christmas and my life moves on in all sorts of interesting ways.

Christmas meme thanks to Christa (sodonti)

1. Real tree or artificial? Real and all six of us need to be in the tree place picking out the tree. It's a yearly event.


2. When do you put up the tree? Usually in the first week of Dec

3. When do you take down the tree? Later and later, thanks to Mr Christmas himself, who I married nine years ago.

4.Wrapping paper or gift bags? I hate those gift bags, a total waste and no fun to open. Lots of paper and different kinds.

5. When do you start Christmas shopping? oh crap..........

6. Who is the hardest person to buy for? My father in law


7. Easiest person to buy for? Nora, Nora loves just about everything we give her.

8. Angel on top of the tree, or star? Gold angel.


9. What is the worst Christmas gift you ever got? Once a friend of Gary's bought us a Jamaican Santa who sang reggae Christmas songs which my children loved so we had to listen to them over and over and over that year, somehow, he disappeared.......


10. What is the best gift you received as a child? A fluorescent 80s outfit with bright orange suspenders and all. I'll never forget how psyched I was to wear it to school.


11. What is your favorite food to eat at Christmas time? Aunt Grace's peanut butter balls, Gary's chili and the morning of Christmas traditional cinnamon buns.

12. What do you want for Christmas this year? Four happy children, one loving husband, health and inner peace. I guess nothing then because I already have those things.

Another day

I had an idea that while Gary was out running errands with Jonah, the girls and I would play board games, a luxury that inevitably Jonah always seems to reek havoc in lately. So, Gary and the little man left on their journey and I pulled out Blokus and Mancala, both favorites of Nora and Sadie and I. In that five minutes time, Nora had pulled out all of the polly pockets and somehow Sadie had dug up an old doll house circa 1995 possibly, and they had built their own game.
Needless to say I didn't interfere and here I am writing, something that I love to do.
Lately our lives have been like this. Sadie continues to travel on her journey of listening to the Harry Potter series over and over again while building things in her room. This week she has moved away from the Kinex and has moved on to the "Dangerous Book for Boys" projects. She tossed the "Daring Book for Girls" and told me that it was too girly and that if she had to do all the things in that book she would rather be a boy. So she is in there making and perfecting the paper airplane. Occasionally she emerges to show us one that does flips in the air or one that dives or something but all in all she is content, her and Myrtle, to hang out in solitude.
I used to worry about my children and socialization. It's funny because I never even think about this anymore. I still worry they are not "learning" enough although I am almost over that hurtle too. I never worry about the social thing anymore.
This worries me a little as I think about it now because I wonder if it is because I genrally think that most of mainstream America is a bunch of nut cases and I, myself, tend to spend way too much time alone. It's a harder life, so I hope I am not instilling this in them. But they are happy and joyful most of the time.
Now that I am not working that much anymore I have a lot of free time which I did not have a few months ago. I find myself waking up in the morning with this sense that I can do anything I was to do that day. We can go to the Museum, which we did on Monday or we can just hang out in our pjs or bake or whatever. Sometimes this is a little much for me, I like to be active and doing things all the time but for the most part I have surprised myself with how much I am ok with this.
This weekend we got a new beautiful piano that was given to us by a friend of Gary's. It is absolutely gorgeous and of course every morning for the last week we have ended up in that room before even eating, playing songs. Sadie has been playing the piano so much lately just by ear and she is an amazing piano player. Gary has taught me some bass and of course Jonah is dancing and playing the guitar or drums. We have learned Rudolph and Jingle Bells and Feliz Navidad and we sound pretty good. These are the things I hope my children will remember about their childhoods and the reason that they don't go to school.
Molly found out that she passed her GED yesterday and is just so happy and thrilled with herself. She scored so high on her reading part that she was considered superior. Part of me wanted to make a copy and send it off to some of her crappier teachers in her life. Part of me felt like crying that I had put her through school as long as I had. Most of me was just happy for her and excited for her future.
Now they are here and they are wanting me to play those games and so it goes.

Christmas Tree Lighting

We went to the Christmas tree lighting today and watched the parade. Now Gary is downstairs making a huge fire and dinner and who knows where that will lead.

Lately I have had so much to write in my blog about that I have not known where to begin. So I guess I will just begin with the beginning of my thoughts. Jonah has pneumonia. You would never know it right now with the racket he is making behind me as he plays with trucks in my bed with his sister. It is really the nights that are the hardest for him, he comes in complaining that we have the heat on too high, or saying "put the fire out" when there is no fire going, fevers high and he is stripping down naked and shivering. I called the doctor today and she had an Xray ordered and low and behold he has pneumonia. I dont even really know what that means other than it sounds really scary and now I have to talk him in to taking medicine twice a day.
Sadie had an appt last week to have four teeth pulled. Once again she handled it true to Sadie style talking about it for weeks, spending inordinate amounts of time upstairs in her room putting together every puzzle she could find and finishing off the Harry Potter series (so much for my theory that she would never get in to Harry Potter). She went in to our crappy dentist's office (more on why he is crappy later) last week with trepidation and misery in her face. It was just she and I. The dentist made no small talk, pulled out the biggest needle I have ever seen and called Sadie a "drama queen" and "foolish" for refusing to let him lay his hands on her. Needless to say once I realized he had no child skills at all and possibly some other mental problems we left there with her four teeth in tact and a referral for an oral surgeon.
Today was the oral surgeon's turn. We spend all week processing that mean dentist and his mean words and how some people take their bad days out on kids and how it was not her fault to be afraid and how I would never let anyone hurt her and all that good stuff. We went in to the oral surgeon's office with some obvious skepticism and prepared to leave if we needed to.
What a difference a little kindness makes. He clearly had children and grandchildren and lots of kid experience. Plus he obviously valued children and Sadie. This was very important to me and to her. We talked about our previous experience and he was so kind to both of us. He told us he would use general anesthesia because clearly Sadie had had a rough experience and the teeth really did need to come out.
I can't tell you what a difference this dentist made to us and to Sadie. Gary still has a hard time going to the ophthalmologist because when he was a kid the ophthalmologist was terribly mean to him and he still suffers. Luckily we have a great ophthalmologist, Dr. Sorkin who everybody in our family adores.
In the middle of all of this craziness is my now 6 year old Nora who celebrated her 6th bday on Sunday with a collection of her closest buddies. She is at a great age right now, asking me how she can help in the midst of sick children and tooth pulling. She rooted right along side me today with Sadie and told me her theory about how the sun hangs there in the sky suspended like that (more on that theory in some other post along the way).
By the way, Dr. Kowalski is crappy doctors name. I need to find a new one.