It's been a hectic past few months. With no rain we've been staying busy hauling and selling hay and even though business has been good, I'm ready for rain.
The girls birthdays are coming up as well as school starting. We're going to try to get Zoe-Mai into Pre-K this year since she's been improving so much with her ABA therapy. She's mimicking more lately and her words are clearer. She's also not drooling as much so her facial muscles must be getting stronger. Of course she's still going to be in the special education class, but I think the extended time learning and pushing herself will be better for her since one of her major issues is her attachment to me and her unwillingness to communicate or even be around new people.
She's been doing really well and we finally moved Kenzie and Zoe-Mai into the same room together...at least until we purchase another property away from this one. Last night was their first night in the room together. Zoe-Mai had a hard time adjusting and this morning I found her sleeping in her old room.
Samuel is still the funniest little man on the planet. After the last doctor visit, his peds doctor recommended we put him on a diet saying he is too fat. He's probably lost 1-2lbs in the past month and half. He's still smiling, laughing, making eye contact, and progressing. I'm working on his room this week and next week so soon he'll be sleeping in his own room which for the most part stinks because I love waking up and seeing him smiling at me.
That's all for now. We're happy and things are getting so much easier on the Zoe-Mai front. She's learning and developing more now and is using what verbal skills she has better so our house isn't filled with her constant yelling. I think she's happier too. What more can I ask for?
Wednesday, July 20, 2011
Thursday, April 28, 2011
In the land of upside down tricycles!
It's been a busy couple of months and I'm finally finding time and reason to get back to writing.
Zoe-Mai has a tricycle. This beautiful little Dora trike that has flashing lights and cool sounds. At the end of the day when it's time to clean up the living room for the next day I can usually find the trike upside down in the middle of the sitting room. If I sneak around enough during the day I can usually get a glimpse of Zoe-Mai sitting, planted firmly around her upside down Dora bike spinning the wheels and watching the stickers spin into one.
Things have been going well these past couple of months. Mackenzie started soccer in March and while she takes a while to warm up and get motivated to play with the other children, she seems to have a blast. Even if all she is doing is running around not even coming close to touching the soccer ball.
Zoe-Mai is doing good for the most part. We started ABA therapy this past Monday with her and she did as expected- threw a 2 hour tantrum. Mrs. Randy, her therapist, at one point said that she fell asleep from her fit throwing exhaustion. Easter went very well and she seemed to enjoy coloring eggs and hunting for them. Only towards the end did she get tired to the point that she just wanted to go home.
Zoe-Mai has a tricycle. This beautiful little Dora trike that has flashing lights and cool sounds. At the end of the day when it's time to clean up the living room for the next day I can usually find the trike upside down in the middle of the sitting room. If I sneak around enough during the day I can usually get a glimpse of Zoe-Mai sitting, planted firmly around her upside down Dora bike spinning the wheels and watching the stickers spin into one.
Things have been going well these past couple of months. Mackenzie started soccer in March and while she takes a while to warm up and get motivated to play with the other children, she seems to have a blast. Even if all she is doing is running around not even coming close to touching the soccer ball.
Kenzie has been doing really well in school as well. She's been learning addition and it's great seeing some of the art that she does here at home. She's writing words on her own and forming small sentences. I'm so proud and so happy for her. The stress rash has been slowly getting smaller and going away. We also went clothes shopping a couple of weeks ago and she was super happy about getting new clothes .
Samuel seems to be getting bigger by the minute. He weighs around 18 lbs now, if not a little more and is only 6 months. He's been eating baby food like a champ and hasn't been gagging or spitting it back up like Zoe-Mai did at that age, so it gives me hope. He's rolling over and starting to crawl now.
Zoe-Mai is doing good for the most part. We started ABA therapy this past Monday with her and she did as expected- threw a 2 hour tantrum. Mrs. Randy, her therapist, at one point said that she fell asleep from her fit throwing exhaustion. Easter went very well and she seemed to enjoy coloring eggs and hunting for them. Only towards the end did she get tired to the point that she just wanted to go home.
She's eating really well now, enough that we were able to throw out her supplement bottle. This makes me happy. Getting her to sleep though is getting harder. Some nights she goes down without a fight, other nights she stands at her door screaming and pulling trying to get out. Last night she did this for a couple of hours and by midnight I was exhausted. I tried laying with her but after about 20 minutes of humming she went on to rubbing my face and it was clear she wasn't going to go to sleep with me in there. So I left her room, put her chain on her door so she couldn't escape and after around 2 hours of her yanking on her door and screaming I had no other choice but to allow her to come out into the living room and watch TV and eat. We had to get sleep, Kenzie needed to get sleep. She finally passed out in front of the TV at 3:30 in the morning and after carrying her back to her room, she slept until 11 in the morning.
She won the battle last night, hopefully we don't have a repeat tonight.
So in the land of upside down tricycles, everything is going better. We're slowly getting better and that's enough to give us hope.
Sunday, February 20, 2011
Spring is almost here!
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.
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.
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.
Thursday, January 27, 2011
Tired
It's been another hard week. We've all been sick and Zoe-Mai has not been wanting to cooperate. I'm at a loss, I just don't know what to do. She's spent the majority of this week just screaming and throwing major tantrums. Any time Samuel cries, anytime Kenzie or Samuel sneeze or cough, when the truck stops moving, when we get out of the truck, going down for nap. It's getting worse, so bad the other day when we were waiting outside of the school to pick Mackenzie up that her banging her body against the car seat was making my truck shake.
I've been giving her some liquid vitamins and so far she hasn't been able to detect the taste in her milk. Since she won't eat very balanced we have to do something to make sure that she is getting her daily need of vitamins. Its only been two days now, but hopefully the liquid drops will help fill the gaps.
Samuel is getting so big now. He's been talking up a storm and smiling and laughing. I love him so much. I didn't think I would love having a son so much, but he is a blast to be around. He does very little sleeping now during the day, but sleeps really well at night. Here in a month or so he'll probably be ready to go into his own room. I'm hoping that Zoe-Mai is able to make the adjustment to sharing a room with Mackenzie.
That's really all for now. This week hasn't been to exciting and Jeremy is on the road headed to Wyoming again, so I'm here just trying to take care of taxes, customers, and kids. Zoe-Mai has been doing okay this morning so she's giving me a bit of a break. Samuel is asleep so all I really have to worry about is getting taxes done and our mare ready to go this next week to be bred. Only one more day until the weekend.
I am also in the works of assembling a Stimming Video Diary. I've been working hard to get videos of Zoe-Mai and her stimming to put on youtube to help other parents and hopefully educate about these stims. For us, Zoe-Mai was easy to detect, but for other parents their children might be showing all the signs that they aren't picking up on. Autism is growing 10-17% a year in the United States alone, education is key for early detection and getting the help these precious children need.
I've been giving her some liquid vitamins and so far she hasn't been able to detect the taste in her milk. Since she won't eat very balanced we have to do something to make sure that she is getting her daily need of vitamins. Its only been two days now, but hopefully the liquid drops will help fill the gaps.
Samuel is getting so big now. He's been talking up a storm and smiling and laughing. I love him so much. I didn't think I would love having a son so much, but he is a blast to be around. He does very little sleeping now during the day, but sleeps really well at night. Here in a month or so he'll probably be ready to go into his own room. I'm hoping that Zoe-Mai is able to make the adjustment to sharing a room with Mackenzie.
That's really all for now. This week hasn't been to exciting and Jeremy is on the road headed to Wyoming again, so I'm here just trying to take care of taxes, customers, and kids. Zoe-Mai has been doing okay this morning so she's giving me a bit of a break. Samuel is asleep so all I really have to worry about is getting taxes done and our mare ready to go this next week to be bred. Only one more day until the weekend.
I am also in the works of assembling a Stimming Video Diary. I've been working hard to get videos of Zoe-Mai and her stimming to put on youtube to help other parents and hopefully educate about these stims. For us, Zoe-Mai was easy to detect, but for other parents their children might be showing all the signs that they aren't picking up on. Autism is growing 10-17% a year in the United States alone, education is key for early detection and getting the help these precious children need.
Monday, January 17, 2011
Good week...bad week!
This week has started off fairly quiet with Kenzie out of school and just hanging out before Jeremy takes off for Wyoming again. Last week however, lets just say that we've seen much, much better weeks.
Zoe-Mai was in some sort of funk starting from last Monday. Just irritable and uncomfortable. Tuesday was no better and we had a doctors appointment for Samuel. So after picking up Kenzie from school we headed straight to the doctors. Zoe-Mai all fresh from her shower and is good clothes, bag of goodies/toys in tow. She started throwing a fit the minute we pulled into the parking lot...knowing exactly where we were. It had been my hopes that not too many children would be in the waiting room with us so she wouldn't be so overwhelmed. Not our luck. The waiting room was basically full of crying, sniffing, sneezing, coughing babies and toddlers. There was no hope that I would get her to calm down.
Kenzie did very well, trying to hand and keep a hold of toys. Zoe-Mai wasn't interested and ran back and forth to the door, crying. Another little boy sitting near us, probably around a year and half old, was getting visibly upset as were many of the parents. Kenzie tried handing a few toys and talking to the little boy, trying to do her best to calm him down knowing that his crying would just upset Zoe-Mai even more. Zoe-Mai wasn't having it and by this time Samuel had woken up and I was juggling him and trying to get Zoe-Mai under control.
We were in the waiting room for 30 minutes by now, with this going non stop and she had graduated from crying to getting aggressive. Zoe-Mai started to raise her hand to hit the little boy and her snatching her toys back from him wasn't helping a thing. Only made him start crying, which prompted more hand raising. The few times she did 'hit' him were thankfully not hard. More like her just patting him.
By this time I had to do something. She was getting worse, not calming down and getting more aggressive. I finally had to call my father in law to come to the clinic to hang out with Zoe-Mai and Kenzie outside while Samuel got his check up and shots. Thankfully, the two nurses who know Zoe-Mai and I bumped us ahead of the others. I couldn't be more grateful for both of these kind ladies who don't judge me and are very understanding of just exactly what Zoe-Mai is going through.
Their kindness helps make the nasty looks and sneering that I was getting from the other parents and the two receptionists more manageable.
That doctors appointment set the tone for most of the week. Zoe-Mai just kept with that funk until Saturday, which I'm thankful she finally pulled out of. Jeremy was home and it's important to me that he and the girls have as nice a weekend as possible together.
This week looks like it will be better. Zoe-Mai has had a good day so far and settled into a nap on her own. I hope that the rest of this week will be as peaceful.
Zoe-Mai was in some sort of funk starting from last Monday. Just irritable and uncomfortable. Tuesday was no better and we had a doctors appointment for Samuel. So after picking up Kenzie from school we headed straight to the doctors. Zoe-Mai all fresh from her shower and is good clothes, bag of goodies/toys in tow. She started throwing a fit the minute we pulled into the parking lot...knowing exactly where we were. It had been my hopes that not too many children would be in the waiting room with us so she wouldn't be so overwhelmed. Not our luck. The waiting room was basically full of crying, sniffing, sneezing, coughing babies and toddlers. There was no hope that I would get her to calm down.
Kenzie did very well, trying to hand and keep a hold of toys. Zoe-Mai wasn't interested and ran back and forth to the door, crying. Another little boy sitting near us, probably around a year and half old, was getting visibly upset as were many of the parents. Kenzie tried handing a few toys and talking to the little boy, trying to do her best to calm him down knowing that his crying would just upset Zoe-Mai even more. Zoe-Mai wasn't having it and by this time Samuel had woken up and I was juggling him and trying to get Zoe-Mai under control.
We were in the waiting room for 30 minutes by now, with this going non stop and she had graduated from crying to getting aggressive. Zoe-Mai started to raise her hand to hit the little boy and her snatching her toys back from him wasn't helping a thing. Only made him start crying, which prompted more hand raising. The few times she did 'hit' him were thankfully not hard. More like her just patting him.
By this time I had to do something. She was getting worse, not calming down and getting more aggressive. I finally had to call my father in law to come to the clinic to hang out with Zoe-Mai and Kenzie outside while Samuel got his check up and shots. Thankfully, the two nurses who know Zoe-Mai and I bumped us ahead of the others. I couldn't be more grateful for both of these kind ladies who don't judge me and are very understanding of just exactly what Zoe-Mai is going through.
Their kindness helps make the nasty looks and sneering that I was getting from the other parents and the two receptionists more manageable.
That doctors appointment set the tone for most of the week. Zoe-Mai just kept with that funk until Saturday, which I'm thankful she finally pulled out of. Jeremy was home and it's important to me that he and the girls have as nice a weekend as possible together.
This week looks like it will be better. Zoe-Mai has had a good day so far and settled into a nap on her own. I hope that the rest of this week will be as peaceful.
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