Posts
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!
Monday, September 26, 2011
Sensitive post. Be careful when you read this.
I don't often like to think, talk or post about things like this. Unfortunately it's a reality when you have a child. Much more so when you have a child with a disability. This is disgusting and I for one want people to make calls to New Hampshire, officals etc. urging them to throw the book at this poor excuse for a human being. I have no mercy for anything like this. Thank God HE does. His grace is sufficeint, thank you.
How do you manage the stress?
Here a I am. I had a great weekend with a fabulous kid and a wonderful husband. BUT....(as their always is with our kids), C kept ticking all weekend long.
I think it started again on Saturday at his soccer game. People were yelling for him (go Cary! Way to pass, etc) but I think all Cary heard was yelling. He couldn't differenciate good and bad. All he heard was yelling. Poor kiddo.
Also, it was so sad (atleast for me) to watch as Cary diassociated about half- way through the game (they have enough kids to trade them out so they won't get tired). A ball would pass right in front of him and he would be looking elsewhere. So hard to watch. He didn't care. I just hurt for him. Worried about what other people are thinking. I get so tense. I want him to fit-in so he won't be bullied or ridiculed but not so much that he "follows the pack."
I want that individuality that I know he has. To celebrate the beauty, uniqueness and joy that is Cary. Maybe it is just me, my perceptions. I grieve though. I want to shield him from everything that might remotely hurt or stress him out. In turn, it may be that very struggle going on inside of me that causes the stress ticks in him.
Like Jenny McCarthy said; Evan will probably come to the mall to ride the escalator after prom. Sounds like a fun date. Appreciating our kids for what and who they are, not what we think (or society) thinks they should be.
What do you think?
I think it started again on Saturday at his soccer game. People were yelling for him (go Cary! Way to pass, etc) but I think all Cary heard was yelling. He couldn't differenciate good and bad. All he heard was yelling. Poor kiddo.
Also, it was so sad (atleast for me) to watch as Cary diassociated about half- way through the game (they have enough kids to trade them out so they won't get tired). A ball would pass right in front of him and he would be looking elsewhere. So hard to watch. He didn't care. I just hurt for him. Worried about what other people are thinking. I get so tense. I want him to fit-in so he won't be bullied or ridiculed but not so much that he "follows the pack."
I want that individuality that I know he has. To celebrate the beauty, uniqueness and joy that is Cary. Maybe it is just me, my perceptions. I grieve though. I want to shield him from everything that might remotely hurt or stress him out. In turn, it may be that very struggle going on inside of me that causes the stress ticks in him.
Like Jenny McCarthy said; Evan will probably come to the mall to ride the escalator after prom. Sounds like a fun date. Appreciating our kids for what and who they are, not what we think (or society) thinks they should be.
What do you think?
Tuesday, September 20, 2011
Autism and Disability Advocates
Life is like a box of chocolates, you never know what you are going to get......
Truer words were never spoken. Let me tell you. I have recently been laid off and it is the best thing that has ever happened to me.
As a result, I have birthed my own non-profit organization. It has been marinating for about a year or so. I was afraid to get started. I guess God needed to give me the ultimate push. Ahhh!!
Please welcome Autism and Disability Advocates. Our mission is to be there, hold the hand and walk through the journey of Autism with the child (or adult), parents, family and friends.
We do this by being a "clearing house" of information and support. We offer a comprehensive plan to clients (at no-cost to the family) for everything that will touch their lives on this journey. (Financial, Social, Emotional, Services and Service Providers, Doctors, Support Groups, Treatment etc)
The biggest thing we offer is understanding. We know what it is like to wake-up at 3am, (wide-awake) thinking about what is to become of our child? The family? What do we do? How do we afford it? How can I spend time with my other children when this one is so needy?
Don't hesitate. Share with a friend.
Truer words were never spoken. Let me tell you. I have recently been laid off and it is the best thing that has ever happened to me.
As a result, I have birthed my own non-profit organization. It has been marinating for about a year or so. I was afraid to get started. I guess God needed to give me the ultimate push. Ahhh!!
Please welcome Autism and Disability Advocates. Our mission is to be there, hold the hand and walk through the journey of Autism with the child (or adult), parents, family and friends.
We do this by being a "clearing house" of information and support. We offer a comprehensive plan to clients (at no-cost to the family) for everything that will touch their lives on this journey. (Financial, Social, Emotional, Services and Service Providers, Doctors, Support Groups, Treatment etc)
The biggest thing we offer is understanding. We know what it is like to wake-up at 3am, (wide-awake) thinking about what is to become of our child? The family? What do we do? How do we afford it? How can I spend time with my other children when this one is so needy?
Don't hesitate. Share with a friend.
Sunday, September 18, 2011
The Art Gallery of Life
The Art Gallery of Life.
The individual is like a unique one-off painting, a masterpiece on canvas.
But its individuality is dulled or altered when others come along and add their own swish of paint to make it something different, adding their own vision of what this unique painting should look like or be.
Someone may not like the original circle painted to one side, so they add a square on top of it. Another prefers to add their idea of the perfect shape, a triangle and another takes the paint brush and loads it with a different colour and scrawls a star.
Before you know it the original painting has become a mishmash of others visions; the original circle is now just visible beneath the added layers of others preferred colours.
Now the unique canvas is unique no more. It is coated in others dreams of what the painting should be and the intruding artists are all standing back arguing about what they each see as to what should be appreciated by the other.
If each ‘artist’ wanted to visualize their own masterpiece, each ‘artist’ should have painted their own shapes and dreams on their own canvas.
Then the gallery of life could display each unique shape, on its own unique canvas, belonging to each unique individual.
The variation of subjects in this ‘exhibition’, within this gallery, can then be the masterpiece of an example of the diversity of the passions of the painters.
Copyright of Louise Page 2011
The individual is like a unique one-off painting, a masterpiece on canvas.
But its individuality is dulled or altered when others come along and add their own swish of paint to make it something different, adding their own vision of what this unique painting should look like or be.
Someone may not like the original circle painted to one side, so they add a square on top of it. Another prefers to add their idea of the perfect shape, a triangle and another takes the paint brush and loads it with a different colour and scrawls a star.
Before you know it the original painting has become a mishmash of others visions; the original circle is now just visible beneath the added layers of others preferred colours.
Now the unique canvas is unique no more. It is coated in others dreams of what the painting should be and the intruding artists are all standing back arguing about what they each see as to what should be appreciated by the other.
If each ‘artist’ wanted to visualize their own masterpiece, each ‘artist’ should have painted their own shapes and dreams on their own canvas.
Then the gallery of life could display each unique shape, on its own unique canvas, belonging to each unique individual.
The variation of subjects in this ‘exhibition’, within this gallery, can then be the masterpiece of an example of the diversity of the passions of the painters.
Copyright of Louise Page 2011
Thursday, April 14, 2011
God is so good!
God is so good. When I have the darkest days and my thoughts can't get out of the muck and mire; HE brings something so sweet and so special as a gentle reminder to me.
I was putting Cary to bed and reading out of "365 Devos for Boys" (with Bob the Tomato and Larry the Cucumber) on the front. This particular day, #76 was so special to me. It was titled "Hopes, Hopes and More Hopes."
"Make me hear joy and gladness." Psalm 51:8 NKJV
Hope is a very good thing to have...and to share. So make this promise to yourself and keep it: promise yourself that you'll be a hopeful person. Think good thoughts. Trust God. Become friends with Jesus. And trust you hopes, not your fears. Then, when you've filled your heart with hope and gladness, share your good thoughts with friends. They'll be better for it, and so will you.
A Timely Tip: Think about all the things you have (starting with your family and your faith)... and think about all the things you can do! Believe in yourself.
A bedtime prayer:
Dear Lord, I have so many reason to be happy. Let me think good thoughts and look for the good in other people. And, help me be a joyful person now and always. Amen.
Talk about out of the mouths of babes.... I never expected to be blessed, corrected, convicted and moved reading and talking about the devotional with Cary. God can and will move, if we let him. What a blessing. I am so grateful. It absolutely blessed me and lifted my spirit. It was and is beautiful. I still cary that feeling with me now. I'm humbled and thankful.
As a bonus, Cary actually got some of the text (the book is a little beyond him; late 2nd early 3rd grade level comprehension). When I asked him about things he had that were good, he said "bowling lanes, pins, baseball and that's it." It's cute and funny as well as part of his obsession; but he recognized those things were good, made him happy and he could share them. I was so pleased when I saw that.
Many of you who know us would say you've seen this all along. That Cary gets this. But I opened my eyes today. I'm always looking down the road and wondering what the next mountain is for me to climb or valley to walk through. This gave me HOPE. It gave me JOY that all is okay. That it will be fine.
I forget so much sometime. I'm always worried and I forget to trust God. I am so blessed that HE is revealing Himself to me the way HE is now, I'm hearing it and receiving it. It is a fresh breath to my soul. I"ve been dark for far too long and these fresh breaths across my life are restorative.
I'm meant to do what I"m doing. Helping, guiding, researching, bringing people together, marketing what I believe helps these kids, etc. I can take it now because I'm not doing what fills me up in ways that God should; I"m doing it because God is filling me first and I'm letting myself be broken bread and poured out wine.
To God be the glory! Sleep tight tonight! Blessings and peace from Above.
I was putting Cary to bed and reading out of "365 Devos for Boys" (with Bob the Tomato and Larry the Cucumber) on the front. This particular day, #76 was so special to me. It was titled "Hopes, Hopes and More Hopes."
"Make me hear joy and gladness." Psalm 51:8 NKJV
Hope is a very good thing to have...and to share. So make this promise to yourself and keep it: promise yourself that you'll be a hopeful person. Think good thoughts. Trust God. Become friends with Jesus. And trust you hopes, not your fears. Then, when you've filled your heart with hope and gladness, share your good thoughts with friends. They'll be better for it, and so will you.
A Timely Tip: Think about all the things you have (starting with your family and your faith)... and think about all the things you can do! Believe in yourself.
A bedtime prayer:
Dear Lord, I have so many reason to be happy. Let me think good thoughts and look for the good in other people. And, help me be a joyful person now and always. Amen.
Talk about out of the mouths of babes.... I never expected to be blessed, corrected, convicted and moved reading and talking about the devotional with Cary. God can and will move, if we let him. What a blessing. I am so grateful. It absolutely blessed me and lifted my spirit. It was and is beautiful. I still cary that feeling with me now. I'm humbled and thankful.
As a bonus, Cary actually got some of the text (the book is a little beyond him; late 2nd early 3rd grade level comprehension). When I asked him about things he had that were good, he said "bowling lanes, pins, baseball and that's it." It's cute and funny as well as part of his obsession; but he recognized those things were good, made him happy and he could share them. I was so pleased when I saw that.
Many of you who know us would say you've seen this all along. That Cary gets this. But I opened my eyes today. I'm always looking down the road and wondering what the next mountain is for me to climb or valley to walk through. This gave me HOPE. It gave me JOY that all is okay. That it will be fine.
I forget so much sometime. I'm always worried and I forget to trust God. I am so blessed that HE is revealing Himself to me the way HE is now, I'm hearing it and receiving it. It is a fresh breath to my soul. I"ve been dark for far too long and these fresh breaths across my life are restorative.
I'm meant to do what I"m doing. Helping, guiding, researching, bringing people together, marketing what I believe helps these kids, etc. I can take it now because I'm not doing what fills me up in ways that God should; I"m doing it because God is filling me first and I'm letting myself be broken bread and poured out wine.
To God be the glory! Sleep tight tonight! Blessings and peace from Above.
Thursday, April 7, 2011
celebrating our kids
The Art Gallery of Life.
The individual is like a unique one-off painting, a masterpiece on canvas.
But its individuality is dulled or altered when others come along and add their own swish of paint to make it something different, adding their own vision of what this unique painting should look like or be.
Someone may not like the original circle painted to one side, so they add a square on top of it. Another prefers to add their idea of the perfect shape, a triangle and another takes the paint brush and loads it with a different colour and scrawls a star.
Before you know it the original painting has become a mishmash of others visions; the original circle is now just visible beneath the added layers of others preferred colours.
Now the unique canvas is unique no more. It is coated in others dreams of what the painting should be and the intruding artists are all standing back arguing about what they each see as to what should be appreciated by the other.
If each ‘artist’ wanted to visualize their own masterpiece, each ‘artist’ should have painted their own shapes and dreams on their own canvas.
Then the gallery of life could display each unique shape, on its own unique canvas, belonging to each unique individual.
The variation of subjects in this ‘exhibition’, within this gallery, can then be the masterpiece of an example of the diversity of the passions of the painters.
The individual is like a unique one-off painting, a masterpiece on canvas.
But its individuality is dulled or altered when others come along and add their own swish of paint to make it something different, adding their own vision of what this unique painting should look like or be.
Someone may not like the original circle painted to one side, so they add a square on top of it. Another prefers to add their idea of the perfect shape, a triangle and another takes the paint brush and loads it with a different colour and scrawls a star.
Before you know it the original painting has become a mishmash of others visions; the original circle is now just visible beneath the added layers of others preferred colours.
Now the unique canvas is unique no more. It is coated in others dreams of what the painting should be and the intruding artists are all standing back arguing about what they each see as to what should be appreciated by the other.
If each ‘artist’ wanted to visualize their own masterpiece, each ‘artist’ should have painted their own shapes and dreams on their own canvas.
Then the gallery of life could display each unique shape, on its own unique canvas, belonging to each unique individual.
The variation of subjects in this ‘exhibition’, within this gallery, can then be the masterpiece of an example of the diversity of the passions of the painters.
Monday, March 7, 2011
It's good to be back
I don't think I mentioned it, it's good to be back. I know I need to write and that God has a bigger plan for me; I just haven't made the time for it. I am know It's such an extension of who I am. I "get it" more than I ever have before. :) Cheers! More tomorrow. Happy Monday and blessings to you are yours.
The Day!!!
What a week it has been!!!! We are still so blessed but boy howdy........ Damn!
I went to a leadership and advocacy conferencece and 20 minutes before I had an appointment with my state representative, Chris calls me and tells me his position (because of budget cuts) has been eliminated. Joy!!!
All went well. My state rep. (Dan Huberty - R) was awesome! He is a freshman and fresh from being on the school board (that helps) and his son has IEP's as well. For what, I don't know.
Point being, it was a wonderful and productive day! Still, God's grace is so evident.
I had a great time at TALAC (Texas Advanced Leadership and Disability Conference). I met some amazing people, true trailblazers. I also had a chance to tape most of the workshops and key note addresses.
The biggest thing I came away with (and knew academically) was how "normal" they were/are. They arem't any different that you and I; they just get to the same place going a different way. That's all. Once of the coolest guys I met had CP, He looks on what he does (public speaking, advocacy and such) as story telling.
Isn't that what we are all here to do; tell a story? :) Anyways.....
As the story ensues.....I'm looking for another job, Chris is as well and I'm wondering, worrying (shouldn't be) and praying about how all of this will make sense for Cary. But, it will. My prayer and want is that I can find something that will give the time I need (I'm working on my own "thing" at the moment) and the money we want to get where we need to go. Is that any different than any other mother or father? Hmmm......
I went to a leadership and advocacy conferencece and 20 minutes before I had an appointment with my state representative, Chris calls me and tells me his position (because of budget cuts) has been eliminated. Joy!!!
All went well. My state rep. (Dan Huberty - R) was awesome! He is a freshman and fresh from being on the school board (that helps) and his son has IEP's as well. For what, I don't know.
Point being, it was a wonderful and productive day! Still, God's grace is so evident.
I had a great time at TALAC (Texas Advanced Leadership and Disability Conference). I met some amazing people, true trailblazers. I also had a chance to tape most of the workshops and key note addresses.
The biggest thing I came away with (and knew academically) was how "normal" they were/are. They arem't any different that you and I; they just get to the same place going a different way. That's all. Once of the coolest guys I met had CP, He looks on what he does (public speaking, advocacy and such) as story telling.
Isn't that what we are all here to do; tell a story? :) Anyways.....
As the story ensues.....I'm looking for another job, Chris is as well and I'm wondering, worrying (shouldn't be) and praying about how all of this will make sense for Cary. But, it will. My prayer and want is that I can find something that will give the time I need (I'm working on my own "thing" at the moment) and the money we want to get where we need to go. Is that any different than any other mother or father? Hmmm......
Tuesday, August 24, 2010
I think I finally get it!
Whew! The first two days of school are over and have been successful. Cary is off to a great start. He has a wonderful support staff in his teacher, his aide, school interventionist, psychologist and the assistant principal. We have been truly blessed.
These past few weeks have seen me floundering a bit. (ADD doesn't help matters....) I knew I wanted to do something with the blog but wasn't sure exactly how to go about it. How to write it, as in adding to certain posts and not creating new ones.
I know the topics that I would want to hear about, but would like to hear from my followers. My topics would be; biomedical intervention (DAN protocol), nutrition, enzymes, different therapy modalities, advocacy, networking opportunities for parents, structured play groups, cooking and baking for the GFCF diet (and other specialized diets) AND, what is developementally appropriate compared to our kids?
So, whoever is out there, give me your feed back and let me know what you think.
These past few weeks have seen me floundering a bit. (ADD doesn't help matters....) I knew I wanted to do something with the blog but wasn't sure exactly how to go about it. How to write it, as in adding to certain posts and not creating new ones.
I know the topics that I would want to hear about, but would like to hear from my followers. My topics would be; biomedical intervention (DAN protocol), nutrition, enzymes, different therapy modalities, advocacy, networking opportunities for parents, structured play groups, cooking and baking for the GFCF diet (and other specialized diets) AND, what is developementally appropriate compared to our kids?
So, whoever is out there, give me your feed back and let me know what you think.
Tuesday, August 10, 2010
Hello Everyone!
It's been a couple of weeks since I've been here and man I"m tired. Tired and blessed really.
We took our first family vacation, in cash, for four days. Rode the river, saw friends, and relaxed. It was a good time. Just always a little stressful when I can't give C free reign. I know any parent can identify, especially ones with ASD's and managing their obsessions/stims.
It has been a challenging summer. C is really coming along in so many areas, but dang; he's just not listening. It's like the terrible two's, except we never went through them. He was pretty compliant and easy going. (when you are stuck in your own little world and small, mecanichal things amuse you, it's easy). Now, he's coming into his own. Realizing he has options, choices and going through many of the same emotions and changes that a two-year old would. He's almost 6. I"m grateful, but man.....it's a challenge. Then add his obession with elevators, computers, microwaves, buttons, machines (vending or otherwise), numbers......and you get the picture. I try and make it a teaching time, but it can drive me nuts! :)
Ahh, c'est la vie!
School starts in a couple of weeks. That's exciting. He is going to be mainstreamed with support for about 3-3 1/2 hours a day. He will continue with speech and will get an hour of OT a couple of times a month. It's going to be a good thing. I"m just nervous. He's never been in a classroom with more than 10 kids before (during his inclusion time he was, but their was an aide for him and one other boy). It's looking like his classroom will be upwards to 18-20. No one else is worried but me. :)
This weekend my parent advisory group will be getting together for our first social. I am so blessed to be with these people. They are wonderful, caring and a lot of fun to be around. We have all have much in common because of our kids and I'm excited to meet the spouses. Yeah!
I'm off. I need to get to bed. I will be posting an update on the GFCF pancakes. Need to work on the texture.
Toodles for now! Love and His Grace, Krista
We took our first family vacation, in cash, for four days. Rode the river, saw friends, and relaxed. It was a good time. Just always a little stressful when I can't give C free reign. I know any parent can identify, especially ones with ASD's and managing their obsessions/stims.
It has been a challenging summer. C is really coming along in so many areas, but dang; he's just not listening. It's like the terrible two's, except we never went through them. He was pretty compliant and easy going. (when you are stuck in your own little world and small, mecanichal things amuse you, it's easy). Now, he's coming into his own. Realizing he has options, choices and going through many of the same emotions and changes that a two-year old would. He's almost 6. I"m grateful, but man.....it's a challenge. Then add his obession with elevators, computers, microwaves, buttons, machines (vending or otherwise), numbers......and you get the picture. I try and make it a teaching time, but it can drive me nuts! :)
Ahh, c'est la vie!
School starts in a couple of weeks. That's exciting. He is going to be mainstreamed with support for about 3-3 1/2 hours a day. He will continue with speech and will get an hour of OT a couple of times a month. It's going to be a good thing. I"m just nervous. He's never been in a classroom with more than 10 kids before (during his inclusion time he was, but their was an aide for him and one other boy). It's looking like his classroom will be upwards to 18-20. No one else is worried but me. :)
This weekend my parent advisory group will be getting together for our first social. I am so blessed to be with these people. They are wonderful, caring and a lot of fun to be around. We have all have much in common because of our kids and I'm excited to meet the spouses. Yeah!
I'm off. I need to get to bed. I will be posting an update on the GFCF pancakes. Need to work on the texture.
Toodles for now! Love and His Grace, Krista
Tuesday, July 27, 2010
Today!
Today was a little different. C had his last therapy session with Elizabeth. He is no longer in need of one-on-one ABA. This is awesome that he has gotten to this point in a year. It's a little hard because I needed the time with her just as much as he did. We will still see her, just not in the same capacity. Bummers, as she would say. She's our favorite.
C will continue in the social interaction group. He definitely needs that. We have him signed-up for after-school tutoring. We will see how that goes.
I have another wonderful dilema. Where do I go from here? I know that I"m meant to do something with Autism, but what? Should I form my own resource group, become an ARD advocate, what? I have an overwhelming need to help. To give to others.
I remember what it felt like when we were handed the diagnosis. I was okay, then about 2-3 months later I thought "Holy s..." I was totally freaked. I thought I was going to have to hover over him constantly (not that I don't do some of that now), watch his EVERY move and have my heart in my throat at every turn.
Some of that has died down, but I still want to give; need to give to others. So, any thoughts, words of wisdom and prayer would be appreciated. More later!
C will continue in the social interaction group. He definitely needs that. We have him signed-up for after-school tutoring. We will see how that goes.
I have another wonderful dilema. Where do I go from here? I know that I"m meant to do something with Autism, but what? Should I form my own resource group, become an ARD advocate, what? I have an overwhelming need to help. To give to others.
I remember what it felt like when we were handed the diagnosis. I was okay, then about 2-3 months later I thought "Holy s..." I was totally freaked. I thought I was going to have to hover over him constantly (not that I don't do some of that now), watch his EVERY move and have my heart in my throat at every turn.
Some of that has died down, but I still want to give; need to give to others. So, any thoughts, words of wisdom and prayer would be appreciated. More later!
Wednesday, July 21, 2010
Great Autism Quotes
" Consider the following four dead-end kids. One was spanked by his teachers for bad grades and a poor attitude. He dropped out of school at 16. Another failed remedial English and came perilously close to flunking out of college. The third feared he'd never make it through school--and might not have without a tutor. The last finally learned to read in third grade, devouring Marvel comics, whose pictures provided clues to help him untangle the words. These four losers are, respectively, Richard Branson, Charles Schwab, John Chambers, and David Boies. "
" Autism itself is not the enemy... the barriers to development that are included with autism are the enemy. The retardation that springs from a lack of development is the enemy. The sensory problems that are often themselves the barriers are the enemy. These things are not part of who the child is... they are barriers to who the child is meant to be, according to the developmental blueprint. Work with the child's strengths to overcome the weaknesses, and work within the autism, not against it, to overcome the developmental barriers. "
-- Frank Klein, autistic
A genius explains - [excerpt]
"Daniel Tammet is an autistic savant. He can perform mind-boggling mathematical calculations at breakneck speeds. But unlike other savants, who can perform similar feats, Tammet can describe how he does it. He speaks seven languages and is even devising his own language. Now scientists are asking whether his exceptional abilities are the key to unlock the secrets of autism. " Interview by Richard Johnson Saturday February 12, 2005
The Guardian
"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover...." Mark Twain
"Do all the good you can, by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can...." John Wesley
" Autism itself is not the enemy... the barriers to development that are included with autism are the enemy. The retardation that springs from a lack of development is the enemy. The sensory problems that are often themselves the barriers are the enemy. These things are not part of who the child is... they are barriers to who the child is meant to be, according to the developmental blueprint. Work with the child's strengths to overcome the weaknesses, and work within the autism, not against it, to overcome the developmental barriers. "
-- Frank Klein, autistic
A genius explains - [excerpt]
"Daniel Tammet is an autistic savant. He can perform mind-boggling mathematical calculations at breakneck speeds. But unlike other savants, who can perform similar feats, Tammet can describe how he does it. He speaks seven languages and is even devising his own language. Now scientists are asking whether his exceptional abilities are the key to unlock the secrets of autism. " Interview by Richard Johnson Saturday February 12, 2005
The Guardian
"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover...." Mark Twain
"Do all the good you can, by all the means you can, in all the ways you can, in all the places you can, at all the times you can, to all the people you can, as long as ever you can...." John Wesley
Thursday, July 15, 2010
Trial Run of GFCF Pancake Recipe
This is the GF pancake recipe as I printed from the internet.
1 cup rice flour
3 tbsps tapioca flour
1/3 cup of potato starch
4 tbsps of dry buttermilk powder ( I don't use it to make it Casein Free)
1 packet of sugar substitue (Stevia)
1 1/2 tsps baking powder
1/2 tsps bking soda
1/2 tsp salt
1/2 tsp xanthan gum
2 eggs
3 tbsp canola oil
2 cups water
In a bowl, mix or sift together the rice flour, tapioca flour, potato startch, dry buttermilk powder, sugar substitue, baking powder, baking soda, salt, and xanthan gum. Stir in eggs, water, and oil until well blended and few lumps remain.
This is where I start changing things. I use almond milk instead of water. It gives it a better and richer flavor. Also, I add about 2 tbsp of ground flax seeds. It makes them rise more like a traditional pancake. Also, I will add a mashed banana. It is the one thing that makes any sweet, baked good in GFCF cooking. I will also add blueberries, slivered almonds, etc.
I try and make it as nutrient rich and great tasting as I possibly can.
I will add more later. I"m off to pick C up from Social Skills Group.
Love, peace and grace unto you.
1 cup rice flour
3 tbsps tapioca flour
1/3 cup of potato starch
4 tbsps of dry buttermilk powder ( I don't use it to make it Casein Free)
1 packet of sugar substitue (Stevia)
1 1/2 tsps baking powder
1/2 tsps bking soda
1/2 tsp salt
1/2 tsp xanthan gum
2 eggs
3 tbsp canola oil
2 cups water
In a bowl, mix or sift together the rice flour, tapioca flour, potato startch, dry buttermilk powder, sugar substitue, baking powder, baking soda, salt, and xanthan gum. Stir in eggs, water, and oil until well blended and few lumps remain.
This is where I start changing things. I use almond milk instead of water. It gives it a better and richer flavor. Also, I add about 2 tbsp of ground flax seeds. It makes them rise more like a traditional pancake. Also, I will add a mashed banana. It is the one thing that makes any sweet, baked good in GFCF cooking. I will also add blueberries, slivered almonds, etc.
I try and make it as nutrient rich and great tasting as I possibly can.
I will add more later. I"m off to pick C up from Social Skills Group.
Love, peace and grace unto you.
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