Wheels on my Chair
Traction Jackson Me & My Chair
Traction Jackson Me & My Chair
Feb 28, 2011
Feb 27, 2011
Essential Role
"There is no role in life more essential and more eternal than that of motherhood.... Recognize that the joy of motherhood comes in moments. There will be hard times and frustrating times. But amid the challenges,
there are shining moments of joy and satisfaction....
What matters is that a mother loves her children deeply and, in keeping with the devotion she has for God and her husband, prioritizes them above all else."
~M. Russell Ballard
there are shining moments of joy and satisfaction....
What matters is that a mother loves her children deeply and, in keeping with the devotion she has for God and her husband, prioritizes them above all else."
~M. Russell Ballard
Feb 26, 2011
Feb 25, 2011
Family Date Night
by Sheila Marcelo of Care.com
Just because the calendar says February 14th is over and done with, it doesn’t mean we have to stop celebrating the spirit of Valentine’s Day! It’s still a great time to be with the people you love and a friendly reminder that maybe—just maybe—you’re overdue for a family date night.
Around Valentine’s Day, there’s a huge pressure on parents and couples to go out together, exchange cards, buy flowers, and have a candlelit dinner. There’s nothing wrong with that (I’ve written before about the importance of date night). But sometimes I think we forget about having a family date night. Just like it’s important for the two of you to get away, it’s also vital to get together!
Valentine’s Day is a great reason to plan a night out with your special someone. Ron and I celebrate it, of course, but we’ve also tried to broaden the holiday’s meaning. Last year, for example, we used Valentine’s Day as an excuse to have a “family date night” and it was one of the most memorable evenings we’d had in a while. We were traveling out of town and instead of going out for a parents-only candlelit dinner, we took our boys and their cousins out with us and had a super-fun evening! (That’s them in the picture above).
How are you going to keep “spreading the love” to everyone you care about beyond Valentine’s Day? If you’re looking for some ideas of where to begin, here are a few (budget-friendly!) ones that come to mind.
Family Dinner
Christine Koh of Boston Mamas included this idea in her great guest post on creative ways to celebrate Valentine’s Day and I wholeheartedly agree with her.
However, I’ll be the first to admit that when things get busy in the Marcelo household, we have a bad habit of “making dinner” by figuring out which restaurant we want to order from. Changing up that routine and doing some old-fashioned home cooking is a great way to create a “family date night” from scratch.
Some of my favorite times come when the four of us carve out a couple hours on the weekend, get together in the kitchen, and make a homemade meal. It’s way better on the budget and it’s also much more memorable than take-out. You can have fun trying out a new recipe, teach your kids some cooking skills, and then sit down to enjoy it all together—all it takes is an hour or two and a few fresh ingredients.
Remembering Grandparents
Think outside of your immediate family and try to include other relatives, as well. If you’re lucky to live close enough to your parents (or even your grandparents), pay them a visit with your whole family.
One of the best activities you can do with grandparents is have your children interview them about what their lives were like growing up. Ask about their favorite Valentine’s Day memories, the first time they met, their first date, or any schoolyard crushes. Those are just some discussion starters you can use to help your kids get to know them better. They’ll love hearing their history! You can even record the interviews and save them for posterity.
Game Night
Game night is a little old-fashioned, but after sitting in front of a computer all day or pounding away on my BlackBerry, it’s nice to unplug with something that’s as simple as rolling dice or flipping over cards. We love the older games like Uno and Sorry! along with the “new classics” like Cranium. The best thing about board games is you can keep coming back to them over and over (so they’re super cost-effective).
Also, Adam loves American Idol so much that we actually bought a karaoke machine—it’s been a great investment for use in our living room and in some Care.com office parties, too.
Community Service
What better way to show the love than by giving back as a family to your local community? Soup kitchens are always looking for volunteers to serve meals or stock shelves. They often can use family members of all ages as volunteers.
You could even have your kids organize a classroom or neighborhood canned food drive, too. Food banks were hit especially hard by the recession and many need our help. February also tends to be a low season for volunteering, since the holiday rush has passed by, so it’s a great time to support a local charity.
Feb 24, 2011
Grief
by Heather Schichtel
Retrieved from Hopeful Parents
I sit on the park bench eating cheesy popcorn and watching young children on the playground. I am enjoying the day, the sun on my face, and the smell of fresh grass.
Randomly I think, I wish Samantha could run and play with these kiddos.
And there it is, the cold hand in my cheesy popcorn; the presence taking up too much space on the park bench, blocking my sunshine. My Grief….
“Really?” I say. “I didn’t invite you. Get your hand out of my cheesy corn.” Instead, I end up having to scoot over, making more room for my Grief.
Grief comes and goes when I least expect it. I’ll be in my car, driving along listening to music and I’ll catch it in the corner of my eye, kicking the back of my seat.
“Hey Heather.”
“Aww crap, what are you doing here?”
“It’s been a while. I thought I would stop in for a visit.”
“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”
“Can I change the station?”
“No.”
“Can I play with the window?”
“No, you can just come along for the ride.”
So we go on the ride together; fingernails thumping on the dashboard as a reminder of who decided to show up today. Yes, I am quite aware of your presence, you don’t need to remind me.
Grief’s appearance used to rattle me, send me into the bathroom, crying hysterically. Render me worthless for a day. Sometimes it still does but as Grief has been established as a consistent visitor in our household, we have drawn up a contract. We have an agreement.
As the mom of Samantha, a child who does not walk or talk, a child who is suffering from a mitochondrial disease, I will grieve. I will grieve for many dreams that will not come to fruition. I will grieve for a life I thought would be different.
I will grieve at times. And I will not grieve at times. I will laugh at times. I will not laugh at times.
Grief can come into our house but is not allowed to stay. If allowed to stay, it would devour the corners of our house. It would suck up the oxygen in the room. It would consume me.
And that is not acceptable.
Grief tends to run within the Special Needs community. I bump into him quite often.
How are you?
My daughter had pneumonia. She is in the hospital on a ventilator.
I look around and see Grief, sitting on the couch, smugly picking at dirty fingernails.
And I meet those who sadly keep very, very close company with this unwanted guest. Grief hangs over them like a shroud. It is hard to laugh. It is hard to love. Because in copious amounts Grief tends to ooze; like a nasty septic wound…draining life from us.
But we still have to laugh, we still have to play, we still have to live….life carries on…
….and on
....and on….
I cannot, at the end of my life say….well, it was long, hard and I was sad.
Surprisingly, our relationship is not based entirely on conflict. My interactions with Grief have allowed me to see myself entirely raw, unprotected, and exposed. At times I feel that I have lost my skin…..yes, here I am. Be careful, that’s my beating heart you see there. Oh no, no, do not touch.
I am no longer afraid to approach others regarding their own tragedies. I bring up the tough conversations. How is your mother? I am sorry for your loss. I am so sorry your daughter is in the hospital. I hug, I cry, I listen. Not because I am an uber-sensitive but because I know Grief sometimes travels alone except when he travels with his favorites… Isolation and Loneliness.
Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment or two.
We have set the rules and sometimes they are followed. We cannot have a permanent impy, uninvited, grievous house guest...we don't have the room...not in our lives, not in my heart...life is too short and despite the bad things that can happen... life is too sweet.
New Look
Hi everyone!
So.... what do you think of the new look?
Take a tour and get familiar with the new layout. I think you'll like it! Be sure to stop by "New Diagnosis" tab for a list of the kidz krew's favorite posts. This is meant to be a resource for parents who just got a diagnosis, but it's a good reminder for all of us. Also stop by the "Kidz Blogs" tab and add your blog if you haven't already.
And don't forget, it's time to update your blog button!
Copy and paste the following html code into your blog:
As always, please feel free to provide any feedback about this blog that you think would make it easier to navigate, more engaging and/or more helpful. We appreciate your feedback and support -- Thanks everyone!!!
So.... what do you think of the new look?
Take a tour and get familiar with the new layout. I think you'll like it! Be sure to stop by "New Diagnosis" tab for a list of the kidz krew's favorite posts. This is meant to be a resource for parents who just got a diagnosis, but it's a good reminder for all of us. Also stop by the "Kidz Blogs" tab and add your blog if you haven't already.
And don't forget, it's time to update your blog button!
Copy and paste the following html code into your blog:
As always, please feel free to provide any feedback about this blog that you think would make it easier to navigate, more engaging and/or more helpful. We appreciate your feedback and support -- Thanks everyone!!!
Feb 23, 2011
The Mountain
Author: Jim Stovall
From: You Don't Have to Be Blind to See
There were two warring tribes in the Andes, one that lived in the lowlands and the other high in the mountains. The mountain people invaded the lowlanders one day, and as part of their plundering of the people, they kidnapped a baby of one of the lowlander families and took the infant with them back up into the mountains.
The lowlanders didn't know how to climb the mountain. They didn't know any of the trails that the mountain people used, and they didn't know where to find the mountain people or how to track them in the steep terrain.
Even so, they sent out their best party of fighting men to climb the mountain and bring the baby home.
The men tried first one method of climbing and then another. They tried one trail and then another. After several days of effort, however, they had climbed only several hundred feet.
Feeling hopeless and helpless, the lowlander men decided that the cause was lost, and they prepared to return to their village below.
As they were packing their gear for the descent, they saw the baby's mother walking toward them. They realized that she was coming down the mountain that they hadn't figured out how to climb.
And then they saw that she had the baby strapped to her back. How could that be?
One man greeted her and said, "We couldn't climb this mountain. How did you do this when we, the strongest and most able men in the village, couldn't do it?"
She shrugged her shoulders and said, "It wasn't your baby."
From: You Don't Have to Be Blind to See
There were two warring tribes in the Andes, one that lived in the lowlands and the other high in the mountains. The mountain people invaded the lowlanders one day, and as part of their plundering of the people, they kidnapped a baby of one of the lowlander families and took the infant with them back up into the mountains.
The lowlanders didn't know how to climb the mountain. They didn't know any of the trails that the mountain people used, and they didn't know where to find the mountain people or how to track them in the steep terrain.
Even so, they sent out their best party of fighting men to climb the mountain and bring the baby home.
The men tried first one method of climbing and then another. They tried one trail and then another. After several days of effort, however, they had climbed only several hundred feet.
Feeling hopeless and helpless, the lowlander men decided that the cause was lost, and they prepared to return to their village below.
As they were packing their gear for the descent, they saw the baby's mother walking toward them. They realized that she was coming down the mountain that they hadn't figured out how to climb.
And then they saw that she had the baby strapped to her back. How could that be?
One man greeted her and said, "We couldn't climb this mountain. How did you do this when we, the strongest and most able men in the village, couldn't do it?"
She shrugged her shoulders and said, "It wasn't your baby."
Feb 22, 2011
Music Fun
I was recently directed to a music site for children called Kididdles. I was so happy to have found it and had to spread the word! They have a huge library of music/melodies, lyrics, music sheets and even activity sheets! They have songs categorized by subject, holidays, and in alphabetical order. Genius!
Chloe loves music and is motivated by music during her therapies, so I'm always trying to find fun new songs to keep her interested and excited. This is such a great site and I highly recommend you check it out if your little one also likes music!
Since Valentine's Day is still on the brain, I thought I'd share one of their Valentine's Day songs that I think is just so sweet. Enjoy!
But I Love You (Love Song for Mama)
Click the song title to hear the melody
The buzzing bees love the clover patch,
The flowers, they love the dew,
The little birds love the apple tree,
But I love you!
The sunshine, it kisses the mountainside,
The stars in the sky kiss the sea,
But I'd be the happiest boy (girl) on earth
If you'd kiss me!
Click the song title to hear the melody
The buzzing bees love the clover patch,
The flowers, they love the dew,
The little birds love the apple tree,
But I love you!
The sunshine, it kisses the mountainside,
The stars in the sky kiss the sea,
But I'd be the happiest boy (girl) on earth
If you'd kiss me!
Happy listening, everyone!
Gift of Time
A Gift of Time
Continuing Your Pregnancy
When Your Baby's Life is Expected to Be Brief
By Amy Kuebelbeck and Deborah L David PH.D
By Amy Kuebelbeck and Deborah L David PH.D
This book, A Gift of Time, came out a few weeks ago. I immediately bought it on my kindle, because I had been receiving email updates on its publishing for years. I had sent in an email when Charlotte was a baby about my experience carrying to term. This book is wonderful. It is informative, it is real, it is comforting, it is practical, and it is very sad. I wish I would have had this book while I was pregnant with Charlotte, and with Lily. Over 100 parents are interviewed and quoted throughout, and I am one of them. It makes me happy to see Charlotte's name there in print (even in e-ink) and hope her story will help moms and dads going through this.
Out of my entire experience with Charlotte and Lily, I can honestly say the hardest time was while I was pregnant with Charlotte. The terrible unknown, feeling so alone, afraid of the birth, afraid of what she would look like, if I would even love her, etc. This book addresses all of that, and what comes after. In fact I read the last few chapters the night before Lily passed away. Even though I'm a nurse and I had been through this before, it was still helpful to read about the dying process, about the decisions that need to be made after death, about relinquishing Lily's body, which is another very difficult moment. Luckily that moment was made much easier by a very caring and respectful mortuary worker. Not everyone has that experience.
This book certainly isn't book club fare or casual reading, but if you happen to hear of a mother who has chosen to carry to term despite a bad prenatal diagnosis, I hope you will direct them to this book or buy them a copy. It covers EVERYTHING you go through. It also covers the first big decision, which is whether to carry to term or terminate the pregnancy, and obviously it is geared towards parents who choose to carry to term. This may not be the right choice for every family, but it was the right choice for us, (both times) and this book would have been so helpful to have. I'm so glad it's available and that I was a part of it!
Feb 21, 2011
Time-Tested Beauty Tips
I bet there's not a single person reading this
who doesn't wish to feel a little more beautiful
a little more often.
Here is some sound advice.
who doesn't wish to feel a little more beautiful
a little more often.
Here is some sound advice.
For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his fingers through it once a day.
For poise, walk with the knowledge that you'll never walk alone ...
People, even more than things, have to be restored, renewed, revived,
reclaimed and redeemed and redeemed and redeemed.
Never throw out anybody.
Remember, if you ever need a helping hand, you'll find one at the end of your arm.
As you grow older you will discover that you have two hands.
One for helping yourself, the other for helping others.
by Sam Levenson
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his fingers through it once a day.
For poise, walk with the knowledge that you'll never walk alone ...
People, even more than things, have to be restored, renewed, revived,
reclaimed and redeemed and redeemed and redeemed.
Never throw out anybody.
Remember, if you ever need a helping hand, you'll find one at the end of your arm.
As you grow older you will discover that you have two hands.
One for helping yourself, the other for helping others.
by Sam Levenson
“Beauty is not in the face; beauty is a light in the heart.”
~Khalil Gibran
~Khalil Gibran
Feb 20, 2011
One of Two Things
When you have come to the edge of all light that you know
and are about to drop off into the darkness of the unknown,
faith
is knowing one of two things will happen:
There will be something solid to stand on
or you will be taught to fly.
~Patrick Overton
Feb 19, 2011
Try Again
This is one of Chloe's favorite songs. We sing it when she's trying to reach, hold her head up, do tummy time, point, talk.... pretty much everything! It's pretty catchy, hope you like it!
Feb 18, 2011
Adaptive Tricycle Pedals
As soon as we saw that little plus sign, my world changed. We were thrilled and immediately my thoughts ran wild. I thought about our new little baby and all she would do. I thought about playing at the park, riding bikes, playing soccer, dancing, singing...anything and everything good that you can imagine, I imagined for our little baby. I imagined what she'd be like and what she would be like. Twenty weeks later, a doctor informed me that our little girl may not do all those things I had imagined. My world changed again. (At the time, even though it would mean a lot of pain, I didn't realize it was for the better.)A while back now, our PT introduced Samantha to the tricycle. I thought she was the cutest thing under the sun as she sat on that tricycle. I didn't care that she couldn't do it herself, she seemed to enjoy it as Kathy pushed her little by little. Soon, Samantha caught on to the concept of needing to push, but she tends to push both legs at the same time -- not so effective when trying to ride a bike. But, just what if she could get it? What if she could ride her own tricycle?! The image in my mind is delightful.
As I watched Kathy push Sammy along, I thought of all the physical-therapy-type-stuff that riding a bike could be helpful for...similar motion to walking -- legs are working independently -- etc. If only her arms were moving at the same time, she could be working on that cross-pattern too. But, we can't have it all -- at least not all at the same time, right?
Aloud I entertained some thoughts about how I could probably make some, and she said, "We have the plans written up. I'll get you a copy." A parent at our local Parent Helping Parents drew them up. Great! (I'm pretty sure these aren't copyrighted...if so, all credit goes to whoever it is who created them at Parents Helping Parents. I also don't have a scanner, so I went with a picture. I just thought this needed to be shared.) So, I sent them off to Dad in Michigan and assigned him to work on Sammy's new adaptive bike pedals. Work he did. They are a bit different than the original plans, but they are beautiful and they work. Here are some close-up pictures of the ones they use at therapy:
 |
| You can see that the actual pedal is between 2 pieces of wood. |
Before she was born, I had imaged Sammy riding a bike. It's been a long time since that thought has entered my mind...but it's back. I get such a thrill pushing her along and helping her -- and she's slowly getting it. Maybe we won't ride on long crazy trails together, but I think I get more of a thrill just thinking about her riding a little tricycle down the sidewalk and watching her learn the process. We've had a lot of fun as a family. Callie likes helping her big little sister on her bike rides, and Sammy loves it too. If anything, it's opened a new door for fun family time. And, perhaps that's the most important thing.
Welcome to Beirut
by Susan F. Rzucidlo
(Beginner's Guide to Autism)
"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 in never normal again, but hey, what fun is normal.
(Beginner's Guide to Autism)
"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 in never normal again, but hey, what fun is normal.
Feb 17, 2011
Feb 16, 2011
Invisible in Amsterdam
When I read Tara's post wanting additional stories about our children, I was actually surprised. Not surprised that we all love to read each other's stories, but surprised, because I didn't think a lot of my stories would be relevant for the Kidz blog.
So much of what we read here are tips, inspirational stories, uplifting quotes and about how much we love our children. All of that is true, vital and necessary for coping and for our survival. But... in our family's life, at times it has been hard to see the sun through the clouds.
I know we all have those days. Bad days are part of life and part of the gig we have of being parents. But, as parents to special needs children, we may even have a few more bad days than most due to circumstances beyond our control such as health, medications, behavior issues, therapy, etc.
When I read Tara's post, I realized something. Maybe all of my posts aren't screaming "This is so wonderful, I wouldn't trade it for anything", but they still have meaning and value. I know it helps me to read about other moms who struggle with some of my similar thoughts, feelings, and experiences. That connection brings me support and helps me to not feel as alone and isolated in ourtrials blessings.
Because Jackson, my not so little guy anymore, isn't medically fragile, we sometimes blend in quite well with the typical world. In other situations, we stand out A LOT more. So, last fall when I read Dana's post about Amsterdam International for the first time, I added my two cents on my personal blog.
I then shared more of my thoughts this past week when Dana created the AI Button.
You can read both posts HERE.
Being able to share our challenges and our triumphs is what makes Kidz and other special needs sites so important. Parents are swapping ideas, what works and what doesn't work, thoughts and feelings about how great it is to have a special needs child and why it is hard. I've learned it is okay to talk about the hard part. Sometimes we may feel as though we have to put on this happy face and pretend everything is okay when inside we are trying not to crumble. All of you are the ones who know exactly what I mean when I share thoughts on hospitals, meds, behavior, IEP and therapy. When I share it with parents of typical children, I know they love and want to support us, but the exact meaning of my message and the feelings behind it sometimes become lost in translation.
Thanks for the nudge Tara. Hopefully we'll have more posts about the reality of life. No worries, not everything I have to say is about the "hard stuff" and I'll try not to over share. :) In fact, because after 10 years of searching we've finally found medication that helps Jackson. Life is actually moving forward once again and we have seen the sun A LOT. Oh how we LOVE the SUN! We hope most of our stormy days are behind us!!!
So much of what we read here are tips, inspirational stories, uplifting quotes and about how much we love our children. All of that is true, vital and necessary for coping and for our survival. But... in our family's life, at times it has been hard to see the sun through the clouds.
I know we all have those days. Bad days are part of life and part of the gig we have of being parents. But, as parents to special needs children, we may even have a few more bad days than most due to circumstances beyond our control such as health, medications, behavior issues, therapy, etc.
When I read Tara's post, I realized something. Maybe all of my posts aren't screaming "This is so wonderful, I wouldn't trade it for anything", but they still have meaning and value. I know it helps me to read about other moms who struggle with some of my similar thoughts, feelings, and experiences. That connection brings me support and helps me to not feel as alone and isolated in our
Because Jackson, my not so little guy anymore, isn't medically fragile, we sometimes blend in quite well with the typical world. In other situations, we stand out A LOT more. So, last fall when I read Dana's post about Amsterdam International for the first time, I added my two cents on my personal blog.
I then shared more of my thoughts this past week when Dana created the AI Button.
You can read both posts HERE.
Being able to share our challenges and our triumphs is what makes Kidz and other special needs sites so important. Parents are swapping ideas, what works and what doesn't work, thoughts and feelings about how great it is to have a special needs child and why it is hard. I've learned it is okay to talk about the hard part. Sometimes we may feel as though we have to put on this happy face and pretend everything is okay when inside we are trying not to crumble. All of you are the ones who know exactly what I mean when I share thoughts on hospitals, meds, behavior, IEP and therapy. When I share it with parents of typical children, I know they love and want to support us, but the exact meaning of my message and the feelings behind it sometimes become lost in translation.
Thanks for the nudge Tara. Hopefully we'll have more posts about the reality of life. No worries, not everything I have to say is about the "hard stuff" and I'll try not to over share. :) In fact, because after 10 years of searching we've finally found medication that helps Jackson. Life is actually moving forward once again and we have seen the sun A LOT. Oh how we LOVE the SUN! We hope most of our stormy days are behind us!!!
Feb 15, 2011
Resources for Social Skills
Effective Social Skill classes are hard to come by. And, often times when you find a group therapy class, it might be out of reach if your insurance won't cover group activities. We've been at this for ten years now and have only been a part of two or three successful groups. We've found Group Social Skill therapy to be a bit of a catch 22. Either your child is in a group with kids just like them and they all struggle with interaction, or you are in a group that has more typical functioning kids and your child isn't experiencing true pressure to interact. What to do? What to do?
A lot of the time, what ends up happening, is a parent is left to their own devices. Instead of a clinical environment, a lot of interaction at home, church, school, and in non-therapy settings like the grocery store or dentist's office becomes your therapy gym. Almost any location or setting can be converted and used to practice therapy skills.
Jackson has just started another Social Skills Therapy group. Because Jackson is getting older and has more ability and confidence, we are hoping this group will be beneficial. Jackson's therapist gave us the following resources. We thought we'd pass them along. If you have other effective at home resources, please leave them in the comments. Other parents are sometimes our best resource.
1. A great website for lots of resources and ideas:
http://www.socialthinking.com/
2. "You are a Social Detective" by: Michelle Garcia Winner, Pamela Crooke, and Kelly Knopp
http://www.socialthinking.com/
(Fantastic book about social thinking written for kids and teens.)
3.Video modeling DVD's and other resources to help kids model appropriate skills and behavior.
http://www.modelmekids.com/
4. What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (What to do Guides for Kids), Paperback (April 14, 2007) by: Dawn Huebner and Bonnie Matthews. (Amazon)
5. What to Do When You Worry Too Much: A Kid's Guide... by: Dawn Huebner. (Amazon).
Feb 14, 2011
A Valentine's Poem For My Sweet Tart Just Because
You have my heart there is no doubt,
my fragile flower, I can’t live without.
my heart is yours, as well my soul
I love you more than you’ll ever know.
A little girl, with long brown hair
her smile it spreads from ear to ear.
her words unspoken, I don’t care
I know she loves me, i’m well aware.
Her future holds no certainty,
but then again who’s does
i’ll just take it day by day
and love her just because.
~Janet Harrold
xoxo
my fragile flower, I can’t live without.
my heart is yours, as well my soul
I love you more than you’ll ever know.
A little girl, with long brown hair
her smile it spreads from ear to ear.
her words unspoken, I don’t care
I know she loves me, i’m well aware.
Her future holds no certainty,
but then again who’s does
i’ll just take it day by day
and love her just because.
~Janet Harrold
xoxo
Love Really is the Answer
We do not love those we love because they are perfect.
Rather, they are perfect because they are loved.
Rather, they are perfect because they are loved.
"Love really is the answer to human problems: love of oneself, love of others, love of where one is, love of what one is doing, love of nature, love of life, love of the world, love of spirit in all its wonder and splendor. Love sets our energy free. It opens us and puts us in a flow with spirit and life on many levels. Love is the true secret behind manifestation."
~David Spangler
~David Spangler
Happy Valentine's Day!!!
Feb 13, 2011
Pure Love
“The world today speaks a great deal about love, and it is sought by many. But the pure love of Christ differs greatly from what the world thinks of love. Charity never seeks selfish gratification. The pure love of Christ seeks only the eternal growth and joy of others.”
~ Ezra Taft Benson
~ Ezra Taft Benson
Feb 12, 2011
When I'm With You
When I hold you in my arms, Love
Something changes
It's the strangest feeling
The things that used to matter
They don't matter to me
When I see you
And you're smiling
How my heart aches
So full it is about to break
You make me believe in love
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
When I hear you, and you're crying
It resonates, Dear
In a place I didn't know was there
You make me believe in love
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
Beautiful baby
You're sweeter than strawberry pie
Just like the morning
Your smile brings the sunshine
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
Something changes
It's the strangest feeling
The things that used to matter
They don't matter to me
When I see you
And you're smiling
How my heart aches
So full it is about to break
You make me believe in love
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
When I hear you, and you're crying
It resonates, Dear
In a place I didn't know was there
You make me believe in love
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
Beautiful baby
You're sweeter than strawberry pie
Just like the morning
Your smile brings the sunshine
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
I could never count all the ways
That you change me, Baby
Every day the sky is a deeper shade of blue
When I'm with you
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