Friday, March 28, 2008
headed to KC
we will be leaving in a few hours to head to KC. We will be staying the afternoon and night at a big lodge there with a huge indoor waterpark. Saturday afternoon we will meet my parents at the TRex restaurant and then the kids will go back to Wichita with my parents for a week. Brian and I will come back home. It will be weird not having the kids for a week! i'm a bit nervous on how they will do, but I'm excited! i can't even imagine the house for a week with no kids! i might even be able to get it completely clean! :)
Wednesday, March 26, 2008
Advocate
I went to my first meeting last night. I went to our local chapter meeting of the Autism Society of America. I was a bit nervous to go. To be honest I wasn't sure what to expect, or who I would meet. I've never actually met another parent of an autistic child in person. I've spoken with many on the internet but never in person. I know that sounds so strange, but for some reason I almost expect autistic parents to look different. Not look different in a bad way, but different. Life with an autistic child is beyond the realm of imaginable for people who aren't living "the life". you almost get the feeling that an autistic parent will look tough, and tired, and broken, and worry lines, and almost be covered in full body armor, you almost imagine PECS pictures stuck on them, you can almost see them begging and pleading with their child to just eat one bite of food that day, you can almost see them charting potty times, and praying for a bowel movement soon, so that you don't have to do the "painful fixes", you almost expect to hear them screaming to god about why they are living this, you almost expect to see a parent with 12 arms flying in all directions...i don't know if this makes sense to all of you reading it, but i know it made sense to them. we had this discussion last night. It was an amazing 2 hrs. It was 2 hrs that I could mention something without having to explain it. It was a time when a parent shared a joy over a normal solid not painful bowel movement for his son and everyone in the rooms eyes sparkled and smiles formed in excitement for that family. It was a time when a mom mentioned meltdowns, and everyone's eyes showed pain and empathy, and exact knowledge of what she meant. She wasn't talking a toddler tantrum, she was talking an autistic meltdown. A meltdown that lasts for hours, that has no beginning and no end, a meltdown that raises body temperature to over 101 degrees, a meltdown that causes the eyes to completely dialate and roll back, a meltdown that causes enough sweat to pour off the toddlers body that their lips becomes dry and cracked and bleeding in a matter of 30 minutes, a meltdown that causes vomiting and dry heaving, a meltdown that ends in pure exhaustion with hours of sleeping afterwards, an autistic meltdown. After the meeting I exchanged phone numbers with many of the parents and we are going to get together, and talk, and let the kids be together. We need that as a family, I need that as a mother trying to figure out how to be an mom to an autistic child. I learned last night that I am Ben's advocate. It is my job to fight for everything that my child needs. I have no idea if this post will make sense to most of you reading it. I hope it does.
Sunday, March 23, 2008
Spring + Easter = Snow
We woke up this morning, and looked out the window and everything was dusted in white. Go figure. It snowed all morning and stopped early afternoon. go figure.
Yesterday we decided to color eggs. I came up with the brilliant idea to blow the eggs out so that we wouldn't have to keep them in the fridge. This was beyond time consuming. I'm not sure if this is something that we will ever do this again. However the kids had lots of fun coloring the eggs and they turned out super cute. After the kids went to bed, brian and I spent over 2 hrs setting up their easter egg hunt. We made a scavenger hunt out of it. Each egg had a picture clue sending them to the next location. they did this for 18 clues until they found their baskets. Then they spent the rest of the day playing with their toys, coloring, watching TV, and playing the Wii. I got started on sewing a dress for Emily. It's going pretty good so far.
My spring break is over, and i'm back at school tomorrow. I'm not excited to get back. It's been nice being here at home this last week with the kids. It hasn't been quite so hectic.
Ariana has her recheck at the doctor tomorrow after her ear infection. She seems to be doing alot better, but still pretty croupy and congested. We shall see. She still isn't walking yet, but is making a few more sounds and babbling. She has therapy again this week, so we'll see how that goes.
Benjamin is doing ok. He is still struggling to go to the PECS cards on his own, but will go sometimes if we remind him too. it's worked some. He's on a major food strike right now, worse than we've ever dealt with. he doesn't eat dinner at all, and eats a minimal amount during the day. We met with a private speech therapist and he will hopefuly be adding her to his therapy schedule here soon. We have his big IEP meetings coming up in April, and we are a bit nervous to see how those go.
Jace is doing good. He had his speech clinic 2 weeks ago, and was referred on to the speech pathologist at our local school. Since he will be going to kindergarten there, they are just going to start his therapy there. He is also scheduled to go get his hearing tests redone now that his last tube has finally fallen out.
Emily is doing well. She's enjoying school. She's reading alot, and is now on to full chapter books. the other day during quiet time she was reading Brian's bible! She got a book teaching her string games, like cat's cradle, and such and she's enjoying figuring those out.
we leave for kansas city on friday and then brian and i will return saturday with no kids. WOW.
Yesterday we decided to color eggs. I came up with the brilliant idea to blow the eggs out so that we wouldn't have to keep them in the fridge. This was beyond time consuming. I'm not sure if this is something that we will ever do this again. However the kids had lots of fun coloring the eggs and they turned out super cute. After the kids went to bed, brian and I spent over 2 hrs setting up their easter egg hunt. We made a scavenger hunt out of it. Each egg had a picture clue sending them to the next location. they did this for 18 clues until they found their baskets. Then they spent the rest of the day playing with their toys, coloring, watching TV, and playing the Wii. I got started on sewing a dress for Emily. It's going pretty good so far.
My spring break is over, and i'm back at school tomorrow. I'm not excited to get back. It's been nice being here at home this last week with the kids. It hasn't been quite so hectic.
Ariana has her recheck at the doctor tomorrow after her ear infection. She seems to be doing alot better, but still pretty croupy and congested. We shall see. She still isn't walking yet, but is making a few more sounds and babbling. She has therapy again this week, so we'll see how that goes.
Benjamin is doing ok. He is still struggling to go to the PECS cards on his own, but will go sometimes if we remind him too. it's worked some. He's on a major food strike right now, worse than we've ever dealt with. he doesn't eat dinner at all, and eats a minimal amount during the day. We met with a private speech therapist and he will hopefuly be adding her to his therapy schedule here soon. We have his big IEP meetings coming up in April, and we are a bit nervous to see how those go.
Jace is doing good. He had his speech clinic 2 weeks ago, and was referred on to the speech pathologist at our local school. Since he will be going to kindergarten there, they are just going to start his therapy there. He is also scheduled to go get his hearing tests redone now that his last tube has finally fallen out.
Emily is doing well. She's enjoying school. She's reading alot, and is now on to full chapter books. the other day during quiet time she was reading Brian's bible! She got a book teaching her string games, like cat's cradle, and such and she's enjoying figuring those out.
we leave for kansas city on friday and then brian and i will return saturday with no kids. WOW.
Wednesday, March 19, 2008
Jace is growing up
it's always been a little joke for Jace that he and i "go on dates" He will hold my hand when we are out shopping sometimes, sit next to me at dinner, or he and I may even get a bit of time to go out just by ourselves. He informed me that I wasn't allowed to tell anyone that we were dating cause he didn't want daddy to be sad. Then one day he had Emily help him make a paper ring and he gave it to me. He was so cute. When we were in Wichita last time my mom took him to lunch and out shopping. She asked him if they could go on a date and he told her no, because he would have to break up with me first. I thought it was absolutely adorable that he was being so sincere and faithful! :) then one day he makes this paper all decorated with hearts and love stickers. He wanted to take it to school but kept forgetting. finally he remembers and i ask him who it's for. he tells me it's for one of the little girls in his class. i ask him if he likes her. he says yes, but that they haven't held hands or kissed. i smiled. then as we were walking into his class he told me that his head was telling him that he needed to tell me that he was going to date this little girl in his class. i told him that i thought it would definately be okay for he and i to not date anymore. i told him that i was sooo much older than him and that with me being his mom and all, you know...i told him that she was his age and probably a much better match for him! as we walked in the door, he told me moms still get kisses and lovin though! this was all about 2 weeks ago. today they both walked out of their classroom together and as we were walking to the car jace was just smiling away. he says that she is nice and cute and pretty! i think it's beyond adorable!
in other news...Ariana is sick. She has a double ear infection and a sinus infection. She hasn't been super thrilled, as you can imagine.
Benjamin is doing well. He's working on PECS, and even used it twice yesterday without any prompting! I was very excited about that!
Emily is doing well. She's working on some state math requirements for school that is keeping her pretty busy. She takes after me, she loves the reading and writing but hates the math. When she puts her mind to it she is good at it, but she doesn't want to try. Last week it with Donuts with Dad at her school, and she had alot of fun. They ate donuts, read books, and got to hang out for a bit, just the two of them. Next month is muffins with mom!
in other news...Ariana is sick. She has a double ear infection and a sinus infection. She hasn't been super thrilled, as you can imagine.
Benjamin is doing well. He's working on PECS, and even used it twice yesterday without any prompting! I was very excited about that!
Emily is doing well. She's working on some state math requirements for school that is keeping her pretty busy. She takes after me, she loves the reading and writing but hates the math. When she puts her mind to it she is good at it, but she doesn't want to try. Last week it with Donuts with Dad at her school, and she had alot of fun. They ate donuts, read books, and got to hang out for a bit, just the two of them. Next month is muffins with mom!
Saturday, March 15, 2008
Family Pictures Today!!!
you can see all of the 108 photos taken today at the photo blog link on the right, but the video above has my 12 favorites!
Thursday, March 13, 2008
Medical Scare
It's been quite the day today. I got a call this morning that didn't start the day out well at all. one of Ben's therapists had been on a 10 day vacation in Mexico. She is back and did Ben's therapy session on Tuesday here at home. Apparently she hadn't been feeling well and went to the doctor. The doctor thought that she had meningitis. So they call everyone who's home that she had Ben at. Mind you she had been around Ben, Ari, Bri, and I. Ariana got sick yesterday and wasn't feeling well at all. The therapist was having the spinal tap this morning so they would know for sure in a few hrs. So i immediately call our family doctor and he tells me that I need to take Ari to the ER and have her tested and to carefully watch the rest of the family. We decide to give it a bit to wait to hear how the therapists test comes back. After 3 agonizing hours, with lots of thinking and freaking out, and staring at Ari and all, the phone rings. My heart was pounding. Her test came back negative. She apparently has a viral sort of infection and fulled a muscle in her neck. So it was actually 2 completely separate things that put together looked exactly like meningitis. HOLY COW. so I called our doc and he said obviously don't go to er and let's just watch Ari and see how she does as it's probably a cold.
As a parent these kind of things are just beyond scary.
As a parent these kind of things are just beyond scary.
Tuesday, March 11, 2008
Big WL Goal Reached!
Today I reached my first big weight loss goal! I've lost 88lbs and am now at 167! This is where my plastic surgeon wanted me to be to be able to have the surgeries! I'm so excited! My next appt with him isn't until the end of the month so I'm hoping to be down even more by then! YEAH!!!!
Friday, March 7, 2008
Settling Down
my knee has settled down for now. The doc is pretty sure it will flair back up but for the time being it seems to be doing well. We did a good job of making it to the gym every day, and we just did upper body workouts until I was able to start using my knee again. yesterday we started back with our full cardio.
Yesterday morning I weighed 169!!! I'm soooo excited about that! i'm having to constantly count calories lately as I'm finding that I haven't been eating enough, which causes me to get stuck on my weight loss.
School is going pretty good. i finished up my exam and presentation in ASL yesterday.
We are just finishing up this last stretch this month! The kids are going to go stay with my parents for their spring break the end of march beginning of april. it will give me time to get my research paper written and study for my midterms. fun fun! i'm also hoping to get some major spring cleaning done while they are gone!
We have a babysitter tonight and are going to go to dinner and a movie! It will be nice to get out for a bit by ourselves!
new pictures on dropshots! the link is to the right under our photos.
Yesterday morning I weighed 169!!! I'm soooo excited about that! i'm having to constantly count calories lately as I'm finding that I haven't been eating enough, which causes me to get stuck on my weight loss.
School is going pretty good. i finished up my exam and presentation in ASL yesterday.
We are just finishing up this last stretch this month! The kids are going to go stay with my parents for their spring break the end of march beginning of april. it will give me time to get my research paper written and study for my midterms. fun fun! i'm also hoping to get some major spring cleaning done while they are gone!
We have a babysitter tonight and are going to go to dinner and a movie! It will be nice to get out for a bit by ourselves!
new pictures on dropshots! the link is to the right under our photos.
Wednesday, March 5, 2008
This is HUGE
Click Here for Full Story
LANDMARK FEDERAL COURT CONCESSION THAT LOCAL CHILD FROM ATLANTA DEVELOPED AUTISM FROM VACCINES
CHILD JOINS PARENTS IN PRESS CONFERENCE ABOUT THIS HISTORIC RESULT AT ATLANTA FEDERAL COURT HOUSE TOMORROW
LOCAL COUPLE FROM ATLANTA WILL JOIN WITH THEIR 9 YEAR OLD DAUGHTER, HANNAH, IN A PRESS CONFERENCE DISCUSSING THEIR DAUGHTER'S DEVELOPMENT OF AUTISM AS A RESULT OF VACCINES. THIS LANDMARK CASE ALLEGED THAT AUTISM WAS CAUSED BY CHILDHOOD VACCINES AND WAS SCHEDULED TO BE HEARD AS A TEST CASE BEFORE THE CONCESSION WAS MADE.
THE PRESS CONFERENCE WILL BE HELD TOMORROW, THURSDAY, MARCH 6, 2008 AT 11:30 AM ON THE STEPS OF U.S. FEDERAL COURTHOUSE AT 75 SPRING STREET IN ATLANTA, GEORGIA.
THE CENTERS FOR DISEASE CONTROL HAVE ESTIMATED THAT 1 IN 166 CHILDREN HAVE AUTISM, AND MANY HAVE LINKED THE AUTISM EPIDEMIC IN THIS COUNTRY TO THE MERCURY BASED PRESERVATIVE USED IN CHILDHOOD VACCINES.
LANDMARK FEDERAL COURT CONCESSION THAT LOCAL CHILD FROM ATLANTA DEVELOPED AUTISM FROM VACCINES
CHILD JOINS PARENTS IN PRESS CONFERENCE ABOUT THIS HISTORIC RESULT AT ATLANTA FEDERAL COURT HOUSE TOMORROW
LOCAL COUPLE FROM ATLANTA WILL JOIN WITH THEIR 9 YEAR OLD DAUGHTER, HANNAH, IN A PRESS CONFERENCE DISCUSSING THEIR DAUGHTER'S DEVELOPMENT OF AUTISM AS A RESULT OF VACCINES. THIS LANDMARK CASE ALLEGED THAT AUTISM WAS CAUSED BY CHILDHOOD VACCINES AND WAS SCHEDULED TO BE HEARD AS A TEST CASE BEFORE THE CONCESSION WAS MADE.
THE PRESS CONFERENCE WILL BE HELD TOMORROW, THURSDAY, MARCH 6, 2008 AT 11:30 AM ON THE STEPS OF U.S. FEDERAL COURTHOUSE AT 75 SPRING STREET IN ATLANTA, GEORGIA.
THE CENTERS FOR DISEASE CONTROL HAVE ESTIMATED THAT 1 IN 166 CHILDREN HAVE AUTISM, AND MANY HAVE LINKED THE AUTISM EPIDEMIC IN THIS COUNTRY TO THE MERCURY BASED PRESERVATIVE USED IN CHILDHOOD VACCINES.
Tuesday, March 4, 2008
still alive
we are still alive, well i'm mostly. I got another cyst on my leg, like the one i had right before christmas. but this one is on my left knee. it was to the point that it was hurting to walk. went to the doc monday and since i had ari with me he didn't want to cut the whole thing out right then. so he cut it open a bit and drained it some and put me on 10 days of antibiotics. about an hour out of the doc the medications and numbing stuff wore off and i was really hurting. i'm pretty bruised and pretty sore. walking is slow and stairs are horrible.
will update more later, just wanted to check in real fast and let everyone know what was going on.
will update more later, just wanted to check in real fast and let everyone know what was going on.
Thursday, February 28, 2008
a portion of Larry King last night
http://www.cnn.com/video/#/video/bestoftv/2008/02/27/lkl.autism.long.cnn
Quick Updates
Haven't blogged for a few days. Things have been hectic. I was so tired come monday evening that Brian and I fell asleep at 8pm! It was so nice to get a full nights sleep!
Tuesday was a LOOOONG day. Ben had a meltdown as we were getting in the van after dropping Jace off at school. He screamed the whole way home and then for 30 minutes here at home. His therapy team showed up in the middle of it and for the first time ever they witnessed what we had tried to describe to them. They were shocked and couldn't believe that this was "sweet little Ben". They agreed FINALLY with what I had been trying to tell them this whole time. The approach they were using simply wasn't what was needed. Ben has a HUGE vocabulary and is really great with rote memorization and labeling and such; but when it comes to every day communication of wants, needs, and such he just doesn't have it. So they are going to be starting PECS with him today. I'm super happy about this and really hoping that this is the avenue that will lead to daily communication!
Now for more news. We haven't said anything until we knew for sure but now that we have all the answers that we will get for now i'll go ahead and update. Ariana had an evaluation over the last 2 weeks. She is having the same developmental delays like Ben had so her doctor wanted an early evaluation. She is only saying dada, baba, and just started saying mama. She isn't walking or any of those things. They also evaluated her for autism red flags, in light of Ben. She passed the autism assessment with flying colors, so that was a huge relief! (although I was 98% sure that she would as she is sooo social!) She is definately showing a delay in motor and speech so she will start getting therapy just like Ben did at her age. we have decided to not get her MMR shot though. When Ben got his is when many of the social issues for him magnified so we have decided to not risk it with Ariana.
In other news...Jace is doing well. He is now officially registered for kindergarten next year and he's super excited! He will be going to the same school as Emily! He's working hard on learning his letters and is enjoying school. He's still taking piano lessons, and starting to get the hang of it. Emily is also doing well. She's busy with school, and starting to get more homework. She is almost finished with all of the 2nd grade sight words at school and is reading on a 2nd-3rd grade level! Her teacher is very pleased! Emily is also still taking piano, and doing well. She is getting ready for her first piano recital in april!
Brian is good. Working. He likes his job and is getting projects and things now that are keeping him busy!
I'm here. Tired. Busy. same old same old. My spring break is coming up in 2 1/2 wks and I couldn't be more ready. My weight loss is going slowly but surely. I'm now down 85 lbs and at 170. I'm excited to be getting so close to my goal!
Tuesday was a LOOOONG day. Ben had a meltdown as we were getting in the van after dropping Jace off at school. He screamed the whole way home and then for 30 minutes here at home. His therapy team showed up in the middle of it and for the first time ever they witnessed what we had tried to describe to them. They were shocked and couldn't believe that this was "sweet little Ben". They agreed FINALLY with what I had been trying to tell them this whole time. The approach they were using simply wasn't what was needed. Ben has a HUGE vocabulary and is really great with rote memorization and labeling and such; but when it comes to every day communication of wants, needs, and such he just doesn't have it. So they are going to be starting PECS with him today. I'm super happy about this and really hoping that this is the avenue that will lead to daily communication!
Now for more news. We haven't said anything until we knew for sure but now that we have all the answers that we will get for now i'll go ahead and update. Ariana had an evaluation over the last 2 weeks. She is having the same developmental delays like Ben had so her doctor wanted an early evaluation. She is only saying dada, baba, and just started saying mama. She isn't walking or any of those things. They also evaluated her for autism red flags, in light of Ben. She passed the autism assessment with flying colors, so that was a huge relief! (although I was 98% sure that she would as she is sooo social!) She is definately showing a delay in motor and speech so she will start getting therapy just like Ben did at her age. we have decided to not get her MMR shot though. When Ben got his is when many of the social issues for him magnified so we have decided to not risk it with Ariana.
In other news...Jace is doing well. He is now officially registered for kindergarten next year and he's super excited! He will be going to the same school as Emily! He's working hard on learning his letters and is enjoying school. He's still taking piano lessons, and starting to get the hang of it. Emily is also doing well. She's busy with school, and starting to get more homework. She is almost finished with all of the 2nd grade sight words at school and is reading on a 2nd-3rd grade level! Her teacher is very pleased! Emily is also still taking piano, and doing well. She is getting ready for her first piano recital in april!
Brian is good. Working. He likes his job and is getting projects and things now that are keeping him busy!
I'm here. Tired. Busy. same old same old. My spring break is coming up in 2 1/2 wks and I couldn't be more ready. My weight loss is going slowly but surely. I'm now down 85 lbs and at 170. I'm excited to be getting so close to my goal!
Monday, February 25, 2008
What a day
today was the big exam. i read through my notes a bit this morning but didn't really push it much. i just simply couldn't do anymore of it. the exam was strange. he worded the questions to the point that by the time i was finished and left the class i had no clue if i had passed or failed! he got them graded quickly and got them posted! i got an 81%!!! YEAH! the class average was 77.82 so i scored above that! thank heavens! not an A but at this point i'm beyond thrilled with a B! :)
Sunday, February 24, 2008
this says it all
I've been reading poems and such and here are a few that I love.
Quiet doesn't always mean "shy"
A tantrum doesn't always mean "naughty"
AUTISM
Would you know if you saw it?
I. Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too.
II. Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence.
III. Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant.
IV. Blessed are those who wait for me. I may be slow, but I appreciate your patience.
V. Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well.
VI. Blessed are those who do not pity me, for I don't want pity. All I want is understanding and respect for what I have learned as well.
VII. Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted.
VIII. Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities.
IX. Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal.
Author Unknown
Just For Today
Just for today, little one,
I'm going to forget that you're autistic
And remember that you're a child.
For this brief shining time,
I will only see the beauty of you and your world.
I will marvel at the spun gold of your hair in the sunlight.
How can anything be so impossibly brilliant?
I will see the blue-green of your infinite eyes
And not worry if they focus on me.
I will admire your concentration
And not mind that it isn't directed in the usual way.
Your smile and laugh will bring me joy.
It won't matter what caused them,
they are marvels unto themselves.
Through your eyes I will delve into the unseen,
Looking at the world with that perspective unique to you.
I will see your lines of leaves and stones
And share your happiness at their precision.
I will close my own eyes
And let the textures you explore overwhelm my senses.
Spinning in circles with you,
I will let go until all is lost but the dizzy.
Just for today,
I will close my books and ignore the research,
the worry, the 'shoulds' and the shadowy future.
You are my baby, my son, my love.
Today, we play.
Written by Delia Thompson
And Then God Created This Mother….
When the Good Lord was creating mothers, He was into his sixth day of 'overtime' when an angel appeared and said,"You're doing a lot of fiddling around on this one."
And the Lord said "Have you read the specs on this order? She has to be completely washable, but not plastic, have 180 moveable parts – all replaceable, run on black coffee and leftovers, have a lap that disappears when she stands up, a kiss that can cure anything from a broken leg to a disappointed love affair and six pairs of hands, ears that will hear things she doesn't want to hear, a mouth that can gently kiss away scrapes and bruises and yet tear the hide right off of those who try anything against the best interests of her child.
Yes, this model will have to be able to sit patiently and listen to outlandish reports about her child without flinching. She will have to hear how hopeless it all is and know that it isn't so. She will have to have those kinds of eyes which don't tear when she hears other mothers talk about how well things are going for their children."
The angel shook its head slowly and said, "Six pairs of hands, yet? No way." "It's not the hands that are causing the problems," said the Lord. "It's the three pairs of eyes this mother has to have." "That's on the standard model"? asked the angel.
The Lord nodded and said, "One pair that sees through closed doors when she asks, "What are you kids doing in there?" when she already knows. Another pair here in the back of her head that sees what she shouldn't but what she has to know and, of course, the ones here in front that can look at a child when he goofs up for the 99th time and say, "I understand and I love you anyway" without so much as uttering a word.
"Lord," said the angel, touching his sleeve gently, "come to bed. Tomorrow…" "I can't, answered the Lord, "I am so close to creating something so close to myself. Already I have one who heals herself when she is sick, feeds a family of six on one pound of hamburger and gets her nine-year-old to stand under a shower." The angel circled the model of a mother very slowly. "It's too soft," it sighed.
"But tough!" said the Lord excitedly. "You cannot imagine what this mother can do or endure." "Can it think?" asked the angel. "Not only can it think," said the Creator, "it can reason and compromise."
Finally, the angel bent over and ran a finger across the cheek. "There is a leak," it pronounced. "I told you that you were trying to put too much into this model." "That's not a leak, said the Lord, "it's a tear." "What's it for?" asked the angel.
"Tears are for joy, saidness, disappointment, pain, loneliness and pride… this model will know a lot about all that" answered the Lord, "But you know" He continued, "I don't even remember putting that tear there." "By the way", asked the angel, "what will you call this model?"
"I will call this one simply, the mother of an autistic child."
Author Unknown
Quiet doesn't always mean "shy"
A tantrum doesn't always mean "naughty"
AUTISM
Would you know if you saw it?
I. Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too.
II. Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence.
III. Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant.
IV. Blessed are those who wait for me. I may be slow, but I appreciate your patience.
V. Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well.
VI. Blessed are those who do not pity me, for I don't want pity. All I want is understanding and respect for what I have learned as well.
VII. Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted.
VIII. Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities.
IX. Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal.
Author Unknown
Just For Today
Just for today, little one,
I'm going to forget that you're autistic
And remember that you're a child.
For this brief shining time,
I will only see the beauty of you and your world.
I will marvel at the spun gold of your hair in the sunlight.
How can anything be so impossibly brilliant?
I will see the blue-green of your infinite eyes
And not worry if they focus on me.
I will admire your concentration
And not mind that it isn't directed in the usual way.
Your smile and laugh will bring me joy.
It won't matter what caused them,
they are marvels unto themselves.
Through your eyes I will delve into the unseen,
Looking at the world with that perspective unique to you.
I will see your lines of leaves and stones
And share your happiness at their precision.
I will close my own eyes
And let the textures you explore overwhelm my senses.
Spinning in circles with you,
I will let go until all is lost but the dizzy.
Just for today,
I will close my books and ignore the research,
the worry, the 'shoulds' and the shadowy future.
You are my baby, my son, my love.
Today, we play.
Written by Delia Thompson
And Then God Created This Mother….
When the Good Lord was creating mothers, He was into his sixth day of 'overtime' when an angel appeared and said,"You're doing a lot of fiddling around on this one."
And the Lord said "Have you read the specs on this order? She has to be completely washable, but not plastic, have 180 moveable parts – all replaceable, run on black coffee and leftovers, have a lap that disappears when she stands up, a kiss that can cure anything from a broken leg to a disappointed love affair and six pairs of hands, ears that will hear things she doesn't want to hear, a mouth that can gently kiss away scrapes and bruises and yet tear the hide right off of those who try anything against the best interests of her child.
Yes, this model will have to be able to sit patiently and listen to outlandish reports about her child without flinching. She will have to hear how hopeless it all is and know that it isn't so. She will have to have those kinds of eyes which don't tear when she hears other mothers talk about how well things are going for their children."
The angel shook its head slowly and said, "Six pairs of hands, yet? No way." "It's not the hands that are causing the problems," said the Lord. "It's the three pairs of eyes this mother has to have." "That's on the standard model"? asked the angel.
The Lord nodded and said, "One pair that sees through closed doors when she asks, "What are you kids doing in there?" when she already knows. Another pair here in the back of her head that sees what she shouldn't but what she has to know and, of course, the ones here in front that can look at a child when he goofs up for the 99th time and say, "I understand and I love you anyway" without so much as uttering a word.
"Lord," said the angel, touching his sleeve gently, "come to bed. Tomorrow…" "I can't, answered the Lord, "I am so close to creating something so close to myself. Already I have one who heals herself when she is sick, feeds a family of six on one pound of hamburger and gets her nine-year-old to stand under a shower." The angel circled the model of a mother very slowly. "It's too soft," it sighed.
"But tough!" said the Lord excitedly. "You cannot imagine what this mother can do or endure." "Can it think?" asked the angel. "Not only can it think," said the Creator, "it can reason and compromise."
Finally, the angel bent over and ran a finger across the cheek. "There is a leak," it pronounced. "I told you that you were trying to put too much into this model." "That's not a leak, said the Lord, "it's a tear." "What's it for?" asked the angel.
"Tears are for joy, saidness, disappointment, pain, loneliness and pride… this model will know a lot about all that" answered the Lord, "But you know" He continued, "I don't even remember putting that tear there." "By the way", asked the angel, "what will you call this model?"
"I will call this one simply, the mother of an autistic child."
Author Unknown
Saturday, February 23, 2008
overload
I have spent the last 3 nights getting my study guide down. i finally finished it today after putting right over 14hrs into it. It is 13 single spaced typed pages. I have spent around 3 something hours being quizzed over it today. I don't think I'm any closer to remembering all of it than when I was when I started! :( I'm so nervous about this exam.
we had sun today. like lots of sun. it was still cold, but atleast we had sun. it's supposed to get above freezing tomorrow, barely (34) but if it does that would be so nice! We are supposed to get another big winter storm monday night though. i sooo hope not! i'm sick of this weather and the kids are sick of missing so much school.
other than that not much else going on around here. i'm taking a break for the rest of the night from studying and hoping to get to relax and watch some tv tonight!
we had sun today. like lots of sun. it was still cold, but atleast we had sun. it's supposed to get above freezing tomorrow, barely (34) but if it does that would be so nice! We are supposed to get another big winter storm monday night though. i sooo hope not! i'm sick of this weather and the kids are sick of missing so much school.
other than that not much else going on around here. i'm taking a break for the rest of the night from studying and hoping to get to relax and watch some tv tonight!
Wednesday, February 20, 2008
Love - Hate Relationships
These seem to be an ongoing thing in my life lately. I love going to school, but I hate the pressure it puts on me and on my time in general. I hate being away from my kids 5 afternoons a week, but I love having some adult time. I'm struggling to keep up with my class work, and now I have a test next week that is worth 1/4 of my grade for the entire semester, I have no choice but to get an A. The study guide has over 200 questions on it and I have an entire 3 ring binder of typed slides, articles, and notes that I have to go through to get all the answers to the study guide. So yeah. I have no clue when the heck I'm going to get the time to do this.
I also have another love hate relationship going on right now that is a bit confusing and sometimes makes me feel like a bad mom. I LOVE LOVE LOVE Benjamin to death and I wouldn't trade him for anything in the world but I HATE autism. It's not fun. It's worse than not fun. He has really been struggling lately and has been super clingy to me. He doesn't even want to take a tippy cup or food from anyone else. If someone else gives him something he will throw it and scream until I give it to him. He follows me around screaming mama mama mama over and over and saying nothing else until I pick him up and hold him. When we go in public he twirls in circles and walks around our table. He eats infrequently, sometimes nothing at all. He freaks out over nothing at all, and there is no way to stop it. He does this in public, he does this at home, I can't stop it. The stares from people are horrible. Sometimes I just want to scream at them, sometimes I want to explain to him why he is doing these things, sometimes I just want to "hole up" in our house and hope that that autism "magically disappears". I read the articles, I watch the news stories, I read the books, HELL I'm majoring in this in college. I begged and got into a graduate level autism semenar and even though I get no college credits for it I'm going for the info. I receive all the sad stares, I receive all the "look at her out of control kid, she's a horrible mom stares", I hear all the apologies, I hear all the reasons why autism MAY have occured, I hear all the solutions on how to MAYBE fix autism, I attend the therapy sessions 3 plus times a week, I speak to people on the phone daily, sometimes for hours to keep his schedule organized, I deal with the embarressment, the guilt, the EVERYTHING. Austism has become our life, our world, and sometimes it freaks me out. I look at Ben and I wonder what's going on in his little mind, when he curls up on me I just hold him and I just want to cry sometimes. I wish the world could see what i see when i look at ben. i wish people would think before they stare and whisper. i have ears, and so does ben. he doesn't understand everything but he is DAMN smart and I believe deep down that he will grow up noticing the stares and whispers too, my older 2 children are noticing when people do that to ben.
I guess what brought all of this on is my exhaustion and what happened on Big Brother the other night. People are riled up and mad about it, and don't get me wrong so am I. Put me at the freaking front of the line to kick his F%&^ A$$ BUT BUT BUT what i think sometimes that people don't get is that this sort of thing happens every day. AGAIN I will repeat what I said early, THIS IS MY LIFE. I hear comments like that, I get those looks, I deal with people like that all the time. I do everything in my power to not only protect Autism itself but to protect my son.
I also have another love hate relationship going on right now that is a bit confusing and sometimes makes me feel like a bad mom. I LOVE LOVE LOVE Benjamin to death and I wouldn't trade him for anything in the world but I HATE autism. It's not fun. It's worse than not fun. He has really been struggling lately and has been super clingy to me. He doesn't even want to take a tippy cup or food from anyone else. If someone else gives him something he will throw it and scream until I give it to him. He follows me around screaming mama mama mama over and over and saying nothing else until I pick him up and hold him. When we go in public he twirls in circles and walks around our table. He eats infrequently, sometimes nothing at all. He freaks out over nothing at all, and there is no way to stop it. He does this in public, he does this at home, I can't stop it. The stares from people are horrible. Sometimes I just want to scream at them, sometimes I want to explain to him why he is doing these things, sometimes I just want to "hole up" in our house and hope that that autism "magically disappears". I read the articles, I watch the news stories, I read the books, HELL I'm majoring in this in college. I begged and got into a graduate level autism semenar and even though I get no college credits for it I'm going for the info. I receive all the sad stares, I receive all the "look at her out of control kid, she's a horrible mom stares", I hear all the apologies, I hear all the reasons why autism MAY have occured, I hear all the solutions on how to MAYBE fix autism, I attend the therapy sessions 3 plus times a week, I speak to people on the phone daily, sometimes for hours to keep his schedule organized, I deal with the embarressment, the guilt, the EVERYTHING. Austism has become our life, our world, and sometimes it freaks me out. I look at Ben and I wonder what's going on in his little mind, when he curls up on me I just hold him and I just want to cry sometimes. I wish the world could see what i see when i look at ben. i wish people would think before they stare and whisper. i have ears, and so does ben. he doesn't understand everything but he is DAMN smart and I believe deep down that he will grow up noticing the stares and whispers too, my older 2 children are noticing when people do that to ben.
I guess what brought all of this on is my exhaustion and what happened on Big Brother the other night. People are riled up and mad about it, and don't get me wrong so am I. Put me at the freaking front of the line to kick his F%&^ A$$ BUT BUT BUT what i think sometimes that people don't get is that this sort of thing happens every day. AGAIN I will repeat what I said early, THIS IS MY LIFE. I hear comments like that, I get those looks, I deal with people like that all the time. I do everything in my power to not only protect Autism itself but to protect my son.
Tuesday, February 19, 2008
weather
well yesterday we still had all the snow and ice on the ground. i took the kids to daycare and got stuck and it took 3 people pushing and digging to get me out. it was so cold that my hands and ears were turning purple and red. When I got in my already warmed up car I literally almost threw up from the shock to the body with such a rapid temperature change. Ben is totally freaked out by this cold. The kids obviously didn't have school yesterday and today is only a 2 hr delay so far, which means the boys don't have school but emily will at 11. This morning it is a very toasty NEGATIVE 8 with a windchill of NEGATIVE 28. Just lovely. Brian has already headed out the door to work, and I'm not looking forward to having to go out today.
Benjamin has therapy today. He missed 2 days last week with us being out of town so I'm glad that he starts back up today. There are a few things that I'd really like to talk with them about.
Benjamin has therapy today. He missed 2 days last week with us being out of town so I'm glad that he starts back up today. There are a few things that I'd really like to talk with them about.
Monday, February 18, 2008
What a trip
Wednesday. 5:30pm. We left Cedar Rapids and headed to Wichita. We didn't get in until almost 2am and Ben freaked out, ALOT. he didn't hardly sleep at all the whole drive.
Thursday. 7am. We woke up and I went out to breakfast with a friend. It was warm and sunny and there was no snow. It was nice, and different! We did valentine's shopping and ari's birthday shopping thursday afternoon and went over to brian's mom's house for dinner on thursday evening.
Friday. We had an appt at 10am and were a bit early so we went to a local car wash to get our beyond filthy van cleaned. It is one of those car washes where it pulls your vehicle in. Well it didn't work and pulled us off the track. A guy from the full service shop came out and had me roll down the window he steared the wheel trying to get us out. Next thing you know there is an explosion noise, and my tire exploded. (I JUST bought ALL 4 of these tires just 4 days before leaving for Wichita). He has Brian and I get out of the car and he drives the van out of the car wash. The damage wasn't nice. It exploded the tired, broke the trim on the wheel and the underside of the bumper, dented the side of the car, and shoved the entire front end of the an back into the body, making it super hard to open and close the drivers door. We demanded to speak to the owner and to have this taken care of. They refused and told us we were out of our league for asking. The shop manager got in Brian's face and told him that he was going to haul him out back and beat the plum shit out of him. I had enough and called the police. They replaced the tire and that was it. We filed an insurance claim and our insurance is going to sue them and make them pay! We missed our appointment by over 2 hrs. Go figure. Friday evening we had valentine's dinner with my parents and then Brian and I went out to a movie. we got to the theater early and fell asleep for 25 minutes waiting for our movie to start. mind you we fell asleep at 8:30pm. lol.
Saturday. We went to brian's dad and step moms for breakfast. Ari's party was at Jimmie's at 11:30. She had a great time! Her cakes looked absolutely amazing and her poodle skirt turned out soooo cute! I will post pictures soon! Then Ari got her first haircut! She looks so cute! i went shopping with a friend and then Brian and I went to a friends house for dinner.
Sunday. We got up and went out to breakfast with my parents and then got on the road. The trip was smooth until about 50 miles from home. We hit lots of snow and ice and it took us over 2 hrs to make it the last 45 miles. Then we got stuck in our driveway and had a heck of a time getting the van in the garage.
This morning the kids school is cancelled and we are still trying to figure out if brian has work or not. We also have no idea if he's even going to be able to get the van out of the driveway.
i will post pics soon.
Thursday. 7am. We woke up and I went out to breakfast with a friend. It was warm and sunny and there was no snow. It was nice, and different! We did valentine's shopping and ari's birthday shopping thursday afternoon and went over to brian's mom's house for dinner on thursday evening.
Friday. We had an appt at 10am and were a bit early so we went to a local car wash to get our beyond filthy van cleaned. It is one of those car washes where it pulls your vehicle in. Well it didn't work and pulled us off the track. A guy from the full service shop came out and had me roll down the window he steared the wheel trying to get us out. Next thing you know there is an explosion noise, and my tire exploded. (I JUST bought ALL 4 of these tires just 4 days before leaving for Wichita). He has Brian and I get out of the car and he drives the van out of the car wash. The damage wasn't nice. It exploded the tired, broke the trim on the wheel and the underside of the bumper, dented the side of the car, and shoved the entire front end of the an back into the body, making it super hard to open and close the drivers door. We demanded to speak to the owner and to have this taken care of. They refused and told us we were out of our league for asking. The shop manager got in Brian's face and told him that he was going to haul him out back and beat the plum shit out of him. I had enough and called the police. They replaced the tire and that was it. We filed an insurance claim and our insurance is going to sue them and make them pay! We missed our appointment by over 2 hrs. Go figure. Friday evening we had valentine's dinner with my parents and then Brian and I went out to a movie. we got to the theater early and fell asleep for 25 minutes waiting for our movie to start. mind you we fell asleep at 8:30pm. lol.
Saturday. We went to brian's dad and step moms for breakfast. Ari's party was at Jimmie's at 11:30. She had a great time! Her cakes looked absolutely amazing and her poodle skirt turned out soooo cute! I will post pictures soon! Then Ari got her first haircut! She looks so cute! i went shopping with a friend and then Brian and I went to a friends house for dinner.
Sunday. We got up and went out to breakfast with my parents and then got on the road. The trip was smooth until about 50 miles from home. We hit lots of snow and ice and it took us over 2 hrs to make it the last 45 miles. Then we got stuck in our driveway and had a heck of a time getting the van in the garage.
This morning the kids school is cancelled and we are still trying to figure out if brian has work or not. We also have no idea if he's even going to be able to get the van out of the driveway.
i will post pics soon.
Thursday, February 14, 2008
Wichita
we are here! we got in at 1:30am technically this morning! We are excited to be here and to get the chance to see everyone.
Wednesday, February 13, 2008
ONE!!!
Holy Cow! My little Ariana is already one! time flies! i will update more later with pictures!
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