It's been a fairly quiet and nice past week. The weather has been in the 70s and 80s, which while hot for this time of year, it has been very nice. I'm not looking forward to the super hot summer that should be coming and I hope that we have a swimming pool put up by then to offer us some relief and some fun.
Zoe-Mai had a pretty good week. Jeremy got her a bubble machine for Valentines Day and she was super happy only for all of us to be let down by it not working. So off to Wal-Mart we go to get another one and this one doesn't work either. So Jeremy found one of our small ones and got it working and Zoe-Mai is in bubble heaven.
Kenzie had a great week at school and had a super fun Valentines party at her school. She was so excited about all the cards and cool toys and candy she got. She also got some more Littlest Petshop toys. Which brings us to our other part of the week where she managed to slide one of the little pets white hats up her cat, Snowbeasts, tail. After a little sedation we were able to cut his tail free from the toy that should have never been able to slide that far up her tail. That cat must love her so much to allow her to do the crazy things she does with him. She's been having a great time playing with her Leapster and ClickStart. She loves her learning games which is awesome. It keeps her mind fresh while having fun and also expends the energy so she sleeps better.
Samuel got a little exersaucer today and has been hanging out in it. He's getting so big and he just talks and talks and smiles all the time. He's such a blast and I'm so happy and proud to have a son. Dressing him in his cute little clothes is also so much fun. He'll be crawling and getting around on his own in no time. Jeremy is about to head back out on the road again so I'm set up to have a pretty busy week coming up.
Trouble is off with Sixteen Acres so that is one less thing I have to worry about. I still have so much left to do on book keeping and taxes. I'm hoping that Zoe-Mai has a good week so I can knock all this stuff out.
Sunday, February 20, 2011
Thursday, February 10, 2011
Talking to your significant other about your autistic child
It's been a rather trying morning. Zoe-Mai spent the majority of it screaming and working herself into a frenzy that she has finally settled down. We've been having a good bit of cold weather so we spend most of our day inside bundled up and I can tell she's getting a bit of cabin fever.
Not much has gone on this week, but recent conversations have had me thinking a bit too much about one question- How do you talk to your closed off SO about your child who is somewhere on the spectrum?
The day it was confirmed that Z0e-Mai was autistic I came home from the doctor crying. I tried to put it as gently as I could to Jeremy that our beautiful little girl would have a very hard life ahead of her. That she wouldn't be normal and would likely be dependent on us for the rest of our lives. All that ended up happening was being set off into a tail spin of blaming ourselves- telling ourselves if we had done this differently, had we done that differently, had we sent her to daycare to have interaction with other children it would all some how have been different- and me trying to explain to Jeremy who knew very little about spectrum disorders at the time, that Autism does not mean retardation, it does not mean low IQ.
It just means different. Different way of learning, different way of seeing things, a different kind of love.
If you read the poem in my previous post, 'Welcome to Holland', it talks about the death of a dream, and in truth...that is what an autism diagnosis is. You suddenly see the life you had imagined for your child slipping away. The birthday parties full of her friends, school activities like spelling bee's and plays, the prom, college, the wedding, their future kids- it all seems so distant because the only thing you can think of is just how much harder life is going to be for them.
In a way, the diagnosis was harder on Jeremy. In my heart I had already accepted that Zoe-Mai was different. I would tell him that something isn't right, this isn't normal. He would say,"That's what everyone said about Kenzie and look at how far she's come!" I would tell him that she's showing so many signs, her spinning, flapping, screaming, and not talking, not wanting to be held, her weird pain triggers and how brushing her hair was more painful than her falling down. Jeremy's only words could be that everyone thought something was wrong with Kenzie, but look at how smart she is, look at how much she can do.
It's been well over a year since Zoe-Mai was first diagnosed. It's still painful for Jeremy to open up and talk about Zoe-Mai's autism. He doesn't like to watch the videos online or read any articles. I've noticed he doesn't really mention her future anymore. He use to joke so much about how all the boys were going to fall for her and how he thought she would be the first to be married. I think he realizes subconsciously that her future, barring any vast improvements, is with us.
I hope one day he will open up this part of our life to me because there is so much I want to tell him and so much I want to show him that Zoe-Mai CAN do. I don't want him to get so lost in the grief of all the things that she will probably never be able to do and forget that there are things she can.
Not much has gone on this week, but recent conversations have had me thinking a bit too much about one question- How do you talk to your closed off SO about your child who is somewhere on the spectrum?
The day it was confirmed that Z0e-Mai was autistic I came home from the doctor crying. I tried to put it as gently as I could to Jeremy that our beautiful little girl would have a very hard life ahead of her. That she wouldn't be normal and would likely be dependent on us for the rest of our lives. All that ended up happening was being set off into a tail spin of blaming ourselves- telling ourselves if we had done this differently, had we done that differently, had we sent her to daycare to have interaction with other children it would all some how have been different- and me trying to explain to Jeremy who knew very little about spectrum disorders at the time, that Autism does not mean retardation, it does not mean low IQ.
It just means different. Different way of learning, different way of seeing things, a different kind of love.
If you read the poem in my previous post, 'Welcome to Holland', it talks about the death of a dream, and in truth...that is what an autism diagnosis is. You suddenly see the life you had imagined for your child slipping away. The birthday parties full of her friends, school activities like spelling bee's and plays, the prom, college, the wedding, their future kids- it all seems so distant because the only thing you can think of is just how much harder life is going to be for them.
In a way, the diagnosis was harder on Jeremy. In my heart I had already accepted that Zoe-Mai was different. I would tell him that something isn't right, this isn't normal. He would say,"That's what everyone said about Kenzie and look at how far she's come!" I would tell him that she's showing so many signs, her spinning, flapping, screaming, and not talking, not wanting to be held, her weird pain triggers and how brushing her hair was more painful than her falling down. Jeremy's only words could be that everyone thought something was wrong with Kenzie, but look at how smart she is, look at how much she can do.
It's been well over a year since Zoe-Mai was first diagnosed. It's still painful for Jeremy to open up and talk about Zoe-Mai's autism. He doesn't like to watch the videos online or read any articles. I've noticed he doesn't really mention her future anymore. He use to joke so much about how all the boys were going to fall for her and how he thought she would be the first to be married. I think he realizes subconsciously that her future, barring any vast improvements, is with us.
I hope one day he will open up this part of our life to me because there is so much I want to tell him and so much I want to show him that Zoe-Mai CAN do. I don't want him to get so lost in the grief of all the things that she will probably never be able to do and forget that there are things she can.
Sunday, February 6, 2011
Welcome to Holland
Welcome to Holland!
by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.
by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.
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