have a feeling this is going to be one of the BEST Mother's Days yet.....I've started off the weekend on such a high..Met a mom at school today, who has a son with VERY similar issues to my Caleb. She has him enrolled in a local charter school, and has seen such a difference!! I am so excited to see if it might be a good fit for my Caleb as well. Then he (Caleb) came home with the Biggest smile, and a sweet little note for me..
Someday... By Caleb
Someday I will be a painter
... Someday I will go to England
Someday I will be a paleontologist
Someday I will get married
Someday I will be a chef
Someday I will be a dad
Someday I will get a clog
But just for Right now, I am happy as Your Son.
I want all these "someday" to happen for him. I want to see him happy, and healthy, and loving his life. I am nervous about making the school change again, but I know that he needs to be somewhere, where he can thrive.....maybe a fresh start that is JUST about him is just what the ticket is!!
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Friday, May 11, 2012
Tuesday, December 8, 2009
Molly's IEP
So, we had Molly's IEP meeting yesterday..the day FROM HELL!! It just didn't start off on the right foot, But on to the "juicy stuff"!! So, after some drama and tears..(mostly on my end) Sam and I finally made it to the meeting. It went...O.K....not as well as I would have hoped. I am of the mind that they are only offering services to cover their own asses...*ie: Caleb* but I am trying not to complain to much because at least she is getting something...1 hour a week of social skills, individual OT and speech..O.k., that is great. But so, then how and when is she supposed to put those "social" skills to work?? Because not only is she NOT potty trained, but she has issues that make that an issue, But no preschool is going to tolerate her behavior issues...so when are Those going to be addressed? Well, I am willing to give this a try, But I am also not going to sit around on my ass while she gets the shaft. I am willing to fight to get her what she needs.
On a side note, came across this poem on a thread on BBC, it was just what I needed to see/hear today.
A meeting was held quite far from earth
It was time again for another birth.
Said the Angles to the Lord above-
“This special child will need much love.
“His progress may be very slow,
“Accomplishment he may not show.
“And he’ll require extra care
“From the folks she meets down there.
“He may not laugh or play,
“His thoughts may seem far away,
“So many times he will be labeled
“’different’, ‘helpless’, and ‘disabled.’
“So let’s be careful where he’s sent.
“We want his life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they’ll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven’s very special child.”
On a side note, came across this poem on a thread on BBC, it was just what I needed to see/hear today.
A meeting was held quite far from earth
It was time again for another birth.
Said the Angles to the Lord above-
“This special child will need much love.
“His progress may be very slow,
“Accomplishment he may not show.
“And he’ll require extra care
“From the folks she meets down there.
“He may not laugh or play,
“His thoughts may seem far away,
“So many times he will be labeled
“’different’, ‘helpless’, and ‘disabled.’
“So let’s be careful where he’s sent.
“We want his life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
“But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they’ll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven’s very special child.”
Friday, March 27, 2009
School is sooo frusterating!!
O.K., so we had Caleb's IEP meeting, it went well...ok...we are all on board to mainstream him. Sam and I have some "issues" with the idea, but we are coming to terms with it. Then OUT OF THE BLUE the school pysch. calls us yesterday...she would like to set up a observation and transition meeting with us for Caleb at the SDC class! WHAT THE HECK??? What happened to mainstreaming this kid??? I mean do not get me wrong, I don't think that he's ready, and I don't think that he would do well..but still! A little bit of notice, some conversations would have been appreciated! I guess I should shut up and count my blessings that H.F. was listening and answered my prayers.
So, as of now here is the "run-down"...Caleb will be attending Fairmont Elem. at the SDC kindergarten class for the '09-'10 school year. The goal of the class is to mainstream by June. Keep your fingers crossed and prayers coming that this all works out! Here we go!!
So, as of now here is the "run-down"...Caleb will be attending Fairmont Elem. at the SDC kindergarten class for the '09-'10 school year. The goal of the class is to mainstream by June. Keep your fingers crossed and prayers coming that this all works out! Here we go!!
Friday, January 16, 2009
Just a Reminder
A fellow BBC patron posted this on The LDSFamilies board, and it really hit home for me.
http://www.youtube.com/watch?v=84FHZhB5__Y
Listen to the words, they will soften your heart too. Sometimes we all just need a little reminder, that we are all a little different.
http://www.youtube.com/watch?v=84FHZhB5__Y
Listen to the words, they will soften your heart too. Sometimes we all just need a little reminder, that we are all a little different.
Sunday, September 14, 2008
My Trip To Beirut
Okay, so our days have not been so great this past week. And I think that while I Loved the Holland Poem, this is really a more accurate view at my life.
Welcome to Beirut
Written by: Susan F. Rzucidlo
WELCOME TO BEIRUT
"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."
There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!
There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired".
Bullets whiz by "refrigerator mother", " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of Autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family.
She'll call you soon. You feel like a lab rat dropped into a maze. Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school).
Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had.
WARNING! You do develop and odd sense of humor.
Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound.
Your child regresses for no apparent reason, and it feels like a kick in the stomach.
Some bully makes fun of your kid and your heart aches.
You're excluded from activities and functions because of your child and you cry.
Your other children are embarrassed to be around your disabled child and you sigh.
You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up.
Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.
You're exhausted because your child doesn't sleep.
And yet, hope springs eternal.
Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress.
When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful.
Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.
Welcome to Beirut
Written by: Susan F. Rzucidlo
WELCOME TO BEIRUT
"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."
There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!
There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired".
Bullets whiz by "refrigerator mother", " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.
Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of Autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family.
She'll call you soon. You feel like a lab rat dropped into a maze. Just as you start to get the first one figured out (early intervention) they drop you into a larger more complex one (school).
Never to be out done, there is always the medical intervention maze. That one is almost never completed. There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had.
WARNING! You do develop and odd sense of humor.
Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound.
Your child regresses for no apparent reason, and it feels like a kick in the stomach.
Some bully makes fun of your kid and your heart aches.
You're excluded from activities and functions because of your child and you cry.
Your other children are embarrassed to be around your disabled child and you sigh.
You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up.
Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.
You're exhausted because your child doesn't sleep.
And yet, hope springs eternal.
Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress.
When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful.
Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life is never normal again, but hey, what fun is normal.
Thursday, September 4, 2008
My Little Ones
I am the mom of 5 wonderful kids, the first two are wonderfully "normal". Then came numbers 3 &4....They are my "special" ones. They have autism. With my son (#3) we didn't find out until he was about 3.5yrs old, and with my daughter (#4) we have some concerns. She just walks to the beat of her own drummer was what we were told, no she beats the drummer up is what we said. Then, came number 5. All I could do was cry; I already have 2 kids with this, why would God send me another one to take care of?? He sent me her to remind me of what a joy my children are. There is nothing sweeter than watching my 2 kids who are "different" than their older siblings interact with their new little sister. To see the joy in my son's eyes when she( the baby) smiles at him, or to hear my daughter sing to her little sister. These are the joys of having a child with autism. The awe and wonder of a new sibling never wears off for them. How jaded life makes us, that the sweeet and simple wonder of a new baby can lose its appeal so quickly. I thank God everyday..ok well most days that is...that I am lucky enough to have my "little ones" in my life. They help me slow down and enjoy the simpler things in life.
Check out our family team at the Walk For Autism Event. We are The Phantastic Phetheans! Thanks, to Jen who let me in on the info, and set up our team. We are walking for our kids who deal with the effects of autism everyday.
Check out our family team at the Walk For Autism Event. We are The Phantastic Phetheans! Thanks, to Jen who let me in on the info, and set up our team. We are walking for our kids who deal with the effects of autism everyday.
Monday, September 1, 2008
My Trips Around the World
I got this wonderful email from my Sister-In-Law, and well it describes my life wonderfully. I just had to share this..especially since Italy is not all that it's cracked up to be. I have been to Italy 2x's, and well while I have enjoyed it immensely, there is nothing in the world I would change about my trips to Holland, they are irreplaceable. Enjoy, and a special thanks to the lady who penned this.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 Rembrandt's.
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.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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 Rembrandt's.
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.
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