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Good morning! It's been fun today. Cary had a decent nights sleep (yet ate pita last night) and had a major meltdown over getting his cuticles clipped. He often has long pieces of skin that grow out from his cuticles. (He picks at them so we have to keep them clipped or they get infected). So, he freaked out! Crying, screaming, shrieking.....It wasn't pretty. It made me cry, Chris was frustrated...I can't explain how it feels when they have an experience like that.
I had to do the pressure hug (calms the nervous system), talk softly, and then get out the door in time for speech! Better than coffee to wake you up.
While Cary was in speech; Chris and I had a chance to talk. It's not always an Autism thing. Some of it is probably Cary growing up but not ready to grow into what he is feeling or how is body is changing. It's a sensory thing. Chris couldn't understand how he could do it before and now, it just couldn't happen. EX: About a year (maybe a little less) before Cary was diagnosed, I took him to Sport Clips to get his haircut. He had managed to get to the point of sitting in the chair by himself with a sucker. One day, we pulled up and he started shrieking; out of the blue. No rhyme, reason or explanation. So, it's been Grandma ever since. (We had a brief stint with another lady in Kingwood. She was good. Maybe we should go back).
So, it doesn't always matter, it just happens.
Then, he had a great day in Speech. Greeted people in the hall way, looked them in the eye, appropriate responses; good coversation. His therapist is really pleased. (He has had the same one for 3 years.) Had some trouble with retelling a story; but a good day all in all.
Beauty for ashes.....But it's all good. Tacos after then the park. A little schoolwork and it's been a good day. Papa is off to an interview and I"m off to work. My little man will be hangin' with Grandma.
Friday, February 1, 2013
Thursday, January 31, 2013
My word....Wednesday was a day! Cary and I had our "date." Such joy. I love spending time with my favorite guy. BUT....isn't there always one?! We passed by and rode.....elevators. Vickie, I"m so sorry. I was tired of fighting.....I know, I know. Trust me....That's all I"ve heard about for the past 24 hours. Atleast it gives me a renewed vow to deal with it.
During lunch, not so bad. I had him at Hubbel and Hudson in the cafe area. We sat in a corner without the "E" being visible. We managed to get through lunch with him getting a little excited by the microwave. Being in a busy place by one of his favorite things and having buttons to push. Mild recipe for "learning."
It wasn't too bad. EXCEPT, I added insult to injury. I let him have a off diet cupcake. (I don't know where all the places are to find acceptable desserts and sweets in the Woodlands). BAD move. (melt down in the car on the way home when I tried to hand him the phone to talk to Papa and another two un-preciptated small ones. ) We also went to the Mezzaine level at H and H so I could drink some coffee. (needed the energy!)
BUT the coolest part of his idiosyncratic ways; we are at the MZ level and he hears California Dreamin' by the Mamas and the Papas. He looks at this table of 2 ladies and says "Listen, it's California Dreamin by the Mamas and the Papas." I loved it! Now, they had been watching us the entire time we were up there. Probably because Cary was sitting by the big "E" to watch the doors or laying on his stomach so he could look at .....something with the "E". I don't think they knew what to make of it. http://www.youtube.com/watch?v=N-aK6JnyFmk
Then I watched Loving Lamposts on Netflix. It was all about Autism; varying degrees of it, treatment etc. I came away with many things. Most of all I"m scared. I'm scared of what the future holds, of not treating Cary in the right way; raising him the best way I know how; getting him ready for the future; helping him "grow-up" and navigate the life.
He is going to have a girl friend in 6-8 years. He will be going to college in 10 years. I"m scared. I've got to let go some, but I"m scared. I just want to protect my baby as much as I can. I don't want anyone to ever harm him, hurt him; etc.
Every parent goest through this; but a parent of a child with Autism - 100 fold more. We have so many more things to think about in addition to the "NT" things of most parents. It just is.....
During lunch, not so bad. I had him at Hubbel and Hudson in the cafe area. We sat in a corner without the "E" being visible. We managed to get through lunch with him getting a little excited by the microwave. Being in a busy place by one of his favorite things and having buttons to push. Mild recipe for "learning."
It wasn't too bad. EXCEPT, I added insult to injury. I let him have a off diet cupcake. (I don't know where all the places are to find acceptable desserts and sweets in the Woodlands). BAD move. (melt down in the car on the way home when I tried to hand him the phone to talk to Papa and another two un-preciptated small ones. ) We also went to the Mezzaine level at H and H so I could drink some coffee. (needed the energy!)
BUT the coolest part of his idiosyncratic ways; we are at the MZ level and he hears California Dreamin' by the Mamas and the Papas. He looks at this table of 2 ladies and says "Listen, it's California Dreamin by the Mamas and the Papas." I loved it! Now, they had been watching us the entire time we were up there. Probably because Cary was sitting by the big "E" to watch the doors or laying on his stomach so he could look at .....something with the "E". I don't think they knew what to make of it. http://www.youtube.com/watch?v=N-aK6JnyFmk
Then I watched Loving Lamposts on Netflix. It was all about Autism; varying degrees of it, treatment etc. I came away with many things. Most of all I"m scared. I'm scared of what the future holds, of not treating Cary in the right way; raising him the best way I know how; getting him ready for the future; helping him "grow-up" and navigate the life.
He is going to have a girl friend in 6-8 years. He will be going to college in 10 years. I"m scared. I've got to let go some, but I"m scared. I just want to protect my baby as much as I can. I don't want anyone to ever harm him, hurt him; etc.
Every parent goest through this; but a parent of a child with Autism - 100 fold more. We have so many more things to think about in addition to the "NT" things of most parents. It just is.....
Wednesday, January 23, 2013
There are good days and bad days. Most days, I forget I even have this blog....unfortunately. But, I need it. I need a place to put my thoughts; Autism related or not. But....it all usually comes back to that. My life revolves around it; consciously, unconsciously, subconsciously....it's there.
Take for instance my job. It is the single most stressful thing in my life: even more than Autism. I have no feet, no direction, no perameters, no structure; yet I"m expected to get things done, run a restaurant, plan events, deal with staff, computer issues, guest issues, manage the ordering, do all of my admin duties; ALL without any help other than my trusted service leads. (We just got a new GM. Thank you Lord! Truly! Sarah is her name and quite a gem).
By the way, I was supossed to do all of this with little to no error after being in the company for months. Two of those months without a GM, very little to no direction, dileniation of duty or much help in the day to day BS.
By the way: my husband is out of work and we are homeschooling! Whoo hoo!
I can't take it any more. I"ve had it up to and over "here." I know I have made honest and true errors, but come on.....give me a flippin break. I can't be "emotional" here or "cry" because it's "baseball." No crying in baseball!
I'm just tired. I give up. Don't know where to turn. I"d rather eat bon bons, drink and watch stupid tv shows on netflix and escape right now. Ok, a little protein and salad so I don't gain a ton of weight....but I need help. Can't do it anymore. So tired....so grustrated, so done in....
Just want something to change, etc. Don't know what it is...but need some help. Keep me in your thoughts and prayers. Love to all!
Krista
Take for instance my job. It is the single most stressful thing in my life: even more than Autism. I have no feet, no direction, no perameters, no structure; yet I"m expected to get things done, run a restaurant, plan events, deal with staff, computer issues, guest issues, manage the ordering, do all of my admin duties; ALL without any help other than my trusted service leads. (We just got a new GM. Thank you Lord! Truly! Sarah is her name and quite a gem).
By the way, I was supossed to do all of this with little to no error after being in the company for months. Two of those months without a GM, very little to no direction, dileniation of duty or much help in the day to day BS.
By the way: my husband is out of work and we are homeschooling! Whoo hoo!
I can't take it any more. I"ve had it up to and over "here." I know I have made honest and true errors, but come on.....give me a flippin break. I can't be "emotional" here or "cry" because it's "baseball." No crying in baseball!
I'm just tired. I give up. Don't know where to turn. I"d rather eat bon bons, drink and watch stupid tv shows on netflix and escape right now. Ok, a little protein and salad so I don't gain a ton of weight....but I need help. Can't do it anymore. So tired....so grustrated, so done in....
Just want something to change, etc. Don't know what it is...but need some help. Keep me in your thoughts and prayers. Love to all!
Krista
Sunday, August 12, 2012
It's late, as usual. My vampiric tendencies are taking over.....C'est la vie!
I'm trying to wrap my head around all of the social media aspects of getting my name out there (twitter, google+, linkedin, facebook, etc).
I have a message and a voice. A voice and a heart that wants to reach out to every parent and tell them they are not alone. It's okay to feel angry, sad, glad; just feel.
My hands long to reach out and touch, hold, protect each and every life affected with Autism and Autism Spectrum Disorder.
I think/look back with the eyes and knowledge I have now and see so much more. For example, how well he was doing and how he gradually started to fade. I get angry at what has been done to my child. Damn vaccines.....that another story for another time.
Other times when I look back; I think, wow, I still have so much to think about, work on, worry about. (Adaptive Behaviors - oy!) I get freaked out. Yet, I'm grateful for those times as well. It gives me perspective for what Cary has accomplished. He has worked his little butt off. I'm so darn proud of that kid. BUT, I am his mom. I know what still lies ahead, what needs to be done. Puberty is just around the corner and it scares the hell out of me. Talk about starting over....Dios Santo!
For now, I will enjoy the moment. The light in his eyes; the attention he pays now, the fact that the fog is begining to lift. He is engaged and gets more and more cogniscent every day.
The best way to wrap up this entry is to post "Welcome to Holland." It's a poem that every special needs parent needs to read. Funny and comforting. :)
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 guide books and make your wonderful plans. The Coliseum. The Michelangelo 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 in 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 must go out and buy new guide books. 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....and 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."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland
I'm trying to wrap my head around all of the social media aspects of getting my name out there (twitter, google+, linkedin, facebook, etc).
I have a message and a voice. A voice and a heart that wants to reach out to every parent and tell them they are not alone. It's okay to feel angry, sad, glad; just feel.
My hands long to reach out and touch, hold, protect each and every life affected with Autism and Autism Spectrum Disorder.
I think/look back with the eyes and knowledge I have now and see so much more. For example, how well he was doing and how he gradually started to fade. I get angry at what has been done to my child. Damn vaccines.....that another story for another time.
Other times when I look back; I think, wow, I still have so much to think about, work on, worry about. (Adaptive Behaviors - oy!) I get freaked out. Yet, I'm grateful for those times as well. It gives me perspective for what Cary has accomplished. He has worked his little butt off. I'm so darn proud of that kid. BUT, I am his mom. I know what still lies ahead, what needs to be done. Puberty is just around the corner and it scares the hell out of me. Talk about starting over....Dios Santo!
For now, I will enjoy the moment. The light in his eyes; the attention he pays now, the fact that the fog is begining to lift. He is engaged and gets more and more cogniscent every day.
The best way to wrap up this entry is to post "Welcome to Holland." It's a poem that every special needs parent needs to read. Funny and comforting. :)
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
Emily Perl 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 guide books and make your wonderful plans. The Coliseum. The Michelangelo 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 in 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 must go out and buy new guide books. 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....and 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."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland
Wednesday, August 8, 2012
http://annedachel.com/2012/08/06/fast-tracking-autism-drug/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+annedachel-com+%28AnneDachel.com%29
This was the post I meant to put on earlier.........Seriously???!!! That's just what we need....more sh.. in our kids bodies! Like hell....(my exact words from my FB comment).
I wonder if Autism Stinks (oops, did I say that!?) is involved. They do fund "research." HAH!
This was the post I meant to put on earlier.........Seriously???!!! That's just what we need....more sh.. in our kids bodies! Like hell....(my exact words from my FB comment).
I wonder if Autism Stinks (oops, did I say that!?) is involved. They do fund "research." HAH!
It's been awhile.....
Life is what you make it....with autism, you REALLY make it up as you go along.
This absence has been tumultous and a period of rediscovery.
With that being said, let's proceed.
A tentative schedule of posts will be new recipes on Mondays, Tuesdays - News on Autism (food, diet, crazy remarks by the NIH and AAP); Wednesday - Tips for working with children with Autism (all from personal experience and what I have seen work. I am not a therapist nor do I claim to be. I"m a mom sharing my story and observations); Thursday - activities and websites, Friday - recap; Saturdays and Sundays - general family stuff....
I will keep you updated on everything else going on. Big changes coming.....we will see what life gives us.
Signing off for now. We have the second half of Cary's eval tomorrow morning.....I hate early mornings! Thank God he doesn't have issues getting up....going through the sliding doors and elevators....that could take hours!!!! :) It's all a blessing. Besos.
Activity suggestion tomorrow!
This absence has been tumultous and a period of rediscovery.
With that being said, let's proceed.
A tentative schedule of posts will be new recipes on Mondays, Tuesdays - News on Autism (food, diet, crazy remarks by the NIH and AAP); Wednesday - Tips for working with children with Autism (all from personal experience and what I have seen work. I am not a therapist nor do I claim to be. I"m a mom sharing my story and observations); Thursday - activities and websites, Friday - recap; Saturdays and Sundays - general family stuff....
I will keep you updated on everything else going on. Big changes coming.....we will see what life gives us.
Signing off for now. We have the second half of Cary's eval tomorrow morning.....I hate early mornings! Thank God he doesn't have issues getting up....going through the sliding doors and elevators....that could take hours!!!! :) It's all a blessing. Besos.
Activity suggestion tomorrow!
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