We are so very thankful this year for so many things.
Our own house
Bunk beds
New schools
Great therapies
Good health
Health Insurance
A supportive family
A beach vacation
Raising sisters
Lauren learning to read
Ellie learning letters
Shannon learning to walk
Bob's new job
Kristin's new (or old job)
Being on our own again
Smiles in the morning
Hugs at night
Snuggy Bear
Kitty-cat (of the non-alive version)
We daily give thanks to God, who for now, has blessed us with these.
Wednesday, November 26, 2008
Sunday, November 23, 2008
Guilt, guilt, guilt
Lauren got invited to some one's birthday party. It was boy in her class and I don't know him. All I know is that they invited the entire class to play glow in the dark golf. It was at 3:00 and Bob had to go to work at 3:30.
I didn't know what to do. It was at a type of environment that I know that she would NOT do well with. It was going to be totally overstimulating. I don't know how to explain Lauren to other people and it's not another parent's job to watch my child 100% of the time.
Another thing is that she can get kind of crazy in environments like that. She starts running and she looses all ability to focus on something for even a few microseconds. She then looses all ability to listen. She also would have difficulty doing playing golf even if everything else was fine.
I don't' want her to get a reputation as "that bad kid" nor do I want other people especially kids to feel sorry for her.
So, I had to make the decision that she couldn't go. Unfortunately, at exactly 3:00 she remembered, She's been crying since 3:00 that she wanted to go "her Tyler birthday party". I feel so bad.
Autism sucks!
I didn't know what to do. It was at a type of environment that I know that she would NOT do well with. It was going to be totally overstimulating. I don't know how to explain Lauren to other people and it's not another parent's job to watch my child 100% of the time.
Another thing is that she can get kind of crazy in environments like that. She starts running and she looses all ability to focus on something for even a few microseconds. She then looses all ability to listen. She also would have difficulty doing playing golf even if everything else was fine.
I don't' want her to get a reputation as "that bad kid" nor do I want other people especially kids to feel sorry for her.
So, I had to make the decision that she couldn't go. Unfortunately, at exactly 3:00 she remembered, She's been crying since 3:00 that she wanted to go "her Tyler birthday party". I feel so bad.
Autism sucks!
Saturday, November 22, 2008
Thursday, November 20, 2008
Training is over!
I just completed my 10 week training class at my new (old) job. That's 10 weeks of my life that I'll never get back.
Only 42 more weeks until I am off probation.
Only 42 more weeks until I am off probation.
Wednesday, November 19, 2008
A common bond
Found this on another blog and loved it.
To You, My Sisters (and Brothers!)
by Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
To You, My Sisters (and Brothers!)
by Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Peri Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
Tuesday, November 18, 2008
IEP meeting
I have a IEP meeting for Lauren tomorrow morning. I hat them, hate them, hate them. I get a knot in my stomach just thinking about them.
First, it's intimidating. It's usually a teacher, a special ed teacher, a SLP (speech and language pathologist, a OT (occupational therapist), a PT (physical therapist), a psychologist, a special services interventionist (or something like that), and a reading intervention specialist. Let's not forget the administrator that's required to be there. And then there's me.
Second, you get services because you are delayed. Therefore, we must spend the majority of the meeting talking about what your child CAN'T do and what other kids CAN do. That's the MFE part.
The IEP part is slightly better because at least there is a discussion of what they can't do but what the school is going to get them to do and how they are going to do it.
Everytime I leave one I am even more aware at how different she is than other kids. It's not something I really like to dwell on, it's something that just is. One of my most common sayings is "It is what it is". I can't spend my life trying to change something that can't be changed.
Ugh, I should drive into work tomorrow ready to jump off a bridge.
First, it's intimidating. It's usually a teacher, a special ed teacher, a SLP (speech and language pathologist, a OT (occupational therapist), a PT (physical therapist), a psychologist, a special services interventionist (or something like that), and a reading intervention specialist. Let's not forget the administrator that's required to be there. And then there's me.
Second, you get services because you are delayed. Therefore, we must spend the majority of the meeting talking about what your child CAN'T do and what other kids CAN do. That's the MFE part.
The IEP part is slightly better because at least there is a discussion of what they can't do but what the school is going to get them to do and how they are going to do it.
Everytime I leave one I am even more aware at how different she is than other kids. It's not something I really like to dwell on, it's something that just is. One of my most common sayings is "It is what it is". I can't spend my life trying to change something that can't be changed.
Ugh, I should drive into work tomorrow ready to jump off a bridge.
Monday, November 17, 2008
cute kid moments 2
It's from last year but better late then never.
My mom sent the girls dresses to wear at Christmas. They were red with white fur trim. Kind of what Mrs. Claus would wear.
Lauren pulls it out of the box and makes a face. She says "I can't wear this. People think I Santa, I not Santa, I Lauren"
Does she look like Santa to you? She was a bit tired here.
My mom sent the girls dresses to wear at Christmas. They were red with white fur trim. Kind of what Mrs. Claus would wear.
Lauren pulls it out of the box and makes a face. She says "I can't wear this. People think I Santa, I not Santa, I Lauren"
Does she look like Santa to you? She was a bit tired here.
Thursday, November 13, 2008
cute kid moments 1
I think this could be a recurring theme.
I forgot my lunch so the crew came up to drop off my lunch. I wasn't able to eat with them because it is a 2 hour late start day and Lauren wouldn't make it to the bus in time.
Ellie hugged me and said "(with a tear of course) I love you, mommy. Please don't go back. Come home with me." She perked up when I told her she could go grocery shopping and buy brownie mix with daddy.
She then handed me her headband and said "here, mommy, take this so you remember me. Put in your purse".
It's days like this that I wish I was independently wealthy.
I forgot my lunch so the crew came up to drop off my lunch. I wasn't able to eat with them because it is a 2 hour late start day and Lauren wouldn't make it to the bus in time.
Ellie hugged me and said "(with a tear of course) I love you, mommy. Please don't go back. Come home with me." She perked up when I told her she could go grocery shopping and buy brownie mix with daddy.
She then handed me her headband and said "here, mommy, take this so you remember me. Put in your purse".
It's days like this that I wish I was independently wealthy.
Wednesday, November 12, 2008
a heartfelt prayer
Ellie prays with her heart. It usually goes something like this
God-
Me, Ellie.
I love you. Do you love me?
Kiss
Amen
God-
Me, Ellie.
I love you. Do you love me?
Kiss
Amen
Tuesday, November 11, 2008
Here we go again
With another T&A. That is a tonsilectomy and adenictomy. Ellie will be having her tonsils and adenoids removed sometime in the next few months. While they are doing that, they are also going to be doing a bronchscopy. They will stick a camera down her throat.
She snores very loudly and she has croup frequently. Hopefully this will put an end to that.
Lauren had a T&A in 8/07. At least now, I'm prepared. I had no idea what to expect with Lauren but I know all about the surgery. It is a rough recovery. However, Ellie can drink orange pop to her heart's content after the surgery.
She snores very loudly and she has croup frequently. Hopefully this will put an end to that.
Lauren had a T&A in 8/07. At least now, I'm prepared. I had no idea what to expect with Lauren but I know all about the surgery. It is a rough recovery. However, Ellie can drink orange pop to her heart's content after the surgery.
Monday, November 10, 2008
A different sort of life
When I am most honest with myself, I know that I am simply masquerading in a normal life. I am simply a pretender. I can get by because I look like a normal mom with three normal (although they are simply the coolest kids ever) kids. I can go to a store or a a restaurnat and no one knows the truth: We are NOT normal.
We are living with autism. We are living with autism every day and every night. From the moment we wake up to the moment we go to sleep, we live with autism. Because we live with autism we experience great highs and great lows but they are none the less different.
Because of autism, the tank covering of my toilet is now cracked in half. She needed to see the water as it went down and lifted it up and dropped it on the floor and cracked. Because of autism, my husband can no longer work his PS2 (darn!) becuase the adaptors have all been chewed. Because of autism, I'm unable to go the grocery store with all of the kids alone. Because of autism, I on a journey that not everyone gets to go on. Because of autism, I realized what pure joy it is when your child hugs you and says "You is the best mommy". Becuae of autism, I realize that there are mothers who will kill for a child to hug them and say "mommy".
No matter how the day starts or ends, I realize how fortunate I am to live in this day and time. I am convinced that twenty years ago we would have show up for kindergarten (or first grade for that matter) and been shoved in a DH class or labeled as a bad kid. But we didn't, we showed up at age 3. We met people who are committed to give Lauren the education she needs and deserves. We met people who love Lauren and who see a child first and then a diagnosis.
Yet it is because of autism, that I hug my NT (neurotypical) kids a little less and expect a little more of them. Sometimes, because of autism, I forget to make a big deal about their milestones. I forget that just because it came so easily to them doesn't mean that I should forget about it.
At the end of the day, I struggle to find a balance between living in the normal world and living with autism. But, I have many more years to figure it out. I'm just glad that Lauren can help me do that.
We are living with autism. We are living with autism every day and every night. From the moment we wake up to the moment we go to sleep, we live with autism. Because we live with autism we experience great highs and great lows but they are none the less different.
Because of autism, the tank covering of my toilet is now cracked in half. She needed to see the water as it went down and lifted it up and dropped it on the floor and cracked. Because of autism, my husband can no longer work his PS2 (darn!) becuase the adaptors have all been chewed. Because of autism, I'm unable to go the grocery store with all of the kids alone. Because of autism, I on a journey that not everyone gets to go on. Because of autism, I realized what pure joy it is when your child hugs you and says "You is the best mommy". Becuae of autism, I realize that there are mothers who will kill for a child to hug them and say "mommy".
No matter how the day starts or ends, I realize how fortunate I am to live in this day and time. I am convinced that twenty years ago we would have show up for kindergarten (or first grade for that matter) and been shoved in a DH class or labeled as a bad kid. But we didn't, we showed up at age 3. We met people who are committed to give Lauren the education she needs and deserves. We met people who love Lauren and who see a child first and then a diagnosis.
Yet it is because of autism, that I hug my NT (neurotypical) kids a little less and expect a little more of them. Sometimes, because of autism, I forget to make a big deal about their milestones. I forget that just because it came so easily to them doesn't mean that I should forget about it.
At the end of the day, I struggle to find a balance between living in the normal world and living with autism. But, I have many more years to figure it out. I'm just glad that Lauren can help me do that.
Sunday, November 9, 2008
Bob's new job
My husband has a new job. He's no longer waiting tables at a family restaurant. He's moved on to a sports bar. he really likes it.
Here's hoping the tips are better.
Here's hoping the tips are better.
Wednesday, November 5, 2008
Lauren the photographer
Lauren has said she wants to be a photographer when she grows up. I think she is doing quite well
Tuesday, November 4, 2008
Voting today
We went and voted today. My husband should still be in line now.
But more importantly Lauren voted yesterday. She proudly will tell you who wants to be president. Arack Omama and John Me-Cane.
Who did she vote for?
John McCain. It seems his name starts with a M just like hers does.
It's as good enough reason as I've heard lately
But more importantly Lauren voted yesterday. She proudly will tell you who wants to be president. Arack Omama and John Me-Cane.
Who did she vote for?
John McCain. It seems his name starts with a M just like hers does.
It's as good enough reason as I've heard lately
Monday, November 3, 2008
Saturday, November 1, 2008
Trick or Treat fun
Trick or treat was a lot of fun this year. We ended up going twice (not counting Trunk or Treat). Lauren's teacher had invited them to go trick or treating at her house. There was a big mix up on the dates. Her teachers lives in the same school district as she teaches in but all of her students live in a different city from that school district yet attend that school district. This led to the city that the school district is in having Trick or Treat on Thursday while her student's Trick or Treat night was not until Friday.
So, we dressed and loaded up all the kids to go Trick or Treating at Lauren's teacher's house. Of course, after you have just done all that prep, you don't just go home after one house.
Tonight was our neighborhood and we ran into a friend from school and did our neighborhood. Poor Ellie's wings were drooping and she was just ready to go home. Shannon had a great ride in the wagon and didn't make a peep because she had a "nummie" in both hands.
The night was finished off with pizza. Don't worry kids most of the candy goes to mommy's work on Monday.
Bob and the parade of princesses
The Tinkerbelles
Riding in style
So, we dressed and loaded up all the kids to go Trick or Treating at Lauren's teacher's house. Of course, after you have just done all that prep, you don't just go home after one house.
Tonight was our neighborhood and we ran into a friend from school and did our neighborhood. Poor Ellie's wings were drooping and she was just ready to go home. Shannon had a great ride in the wagon and didn't make a peep because she had a "nummie" in both hands.
The night was finished off with pizza. Don't worry kids most of the candy goes to mommy's work on Monday.
Bob and the parade of princesses
The Tinkerbelles
Riding in style
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